ticker
03-22-2002, 11:29 AM
I correspond with people from all over who have Lyme Disease and other tickborne illnesses. Lyme Disease is known as the great imitator because its symptoms mimic those of many other diseases. Many people who have Lyme, were first diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, MS, ALS or other diseases. They suffered for years and then found out that they have Lyme Disease. Like the other diseases mentioned, tickborne illnesses are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease at IgeneX lab in Palo Alto, CA.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease at IgeneX lab in Palo Alto, CA.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
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michele97
04-24-2002, 10:07 AM
Hello all. I have a question about lyme. I am currently being tested for Lyme disease, am wondering if you have to have ALL of these symptoms to have lyme disease?? I currently have about half of them. Thanks for any help.
[Please don't post personal details. Thanks. Mod3]
[This message has been edited by moderator3 (edited 04-24-2002).]
[Please don't post personal details. Thanks. Mod3]
[This message has been edited by moderator3 (edited 04-24-2002).]
ticker
04-24-2002, 07:12 PM
Michele97, you do not have to have all of these symptoms. Please make sure you are tested by a doctor who is knowledgable about Lyme.
Saydi
05-06-2002, 02:10 PM
Dear Tickler,
We live in an area with high infestation of the deer tick and Lyme is fairly common. My husband has come down with some symptoms that have lasted for two weeks and sound to me like it could be Lyme, although he doesn't remember being bitten. He is achey all over and has had bad headaches, is fatigued and constipated (never had that problem before)and has experienced some nausea. He had some discomfort on his lower left abdomen to touch and his GP thinks it could be a kidney stone..but that doesn't explain the muscle achiness. I think that could've been the constipation possibly. Do those symptoms sounds like it could be Lyme?
How do you find a Dr. who is knowledgable about Lyme and is there any blood test that is more thurough in screening for it?
We live in an area with high infestation of the deer tick and Lyme is fairly common. My husband has come down with some symptoms that have lasted for two weeks and sound to me like it could be Lyme, although he doesn't remember being bitten. He is achey all over and has had bad headaches, is fatigued and constipated (never had that problem before)and has experienced some nausea. He had some discomfort on his lower left abdomen to touch and his GP thinks it could be a kidney stone..but that doesn't explain the muscle achiness. I think that could've been the constipation possibly. Do those symptoms sounds like it could be Lyme?
How do you find a Dr. who is knowledgable about Lyme and is there any blood test that is more thurough in screening for it?
ticker
05-06-2002, 11:50 PM
Hi Saydi. Unfortunately, no Lyme test is completely reliable. Even the CDC says negative tests do not rule out Lyme Disease. Many people do not know they have been bitten by a tick.
Do you have any kind of Lyme Disease Association and/or Lyme support group in your area?
Do you have any kind of Lyme Disease Association and/or Lyme support group in your area?
Saydi
05-07-2002, 02:22 AM
Dear Ticker,
Most likely we do and I will have to look into it. My son just told us today he found a tick on the back of his leg at school (engaged). He said it was reddish-brown and the size of a tack head! Can the deer tick get that large? Now my husband is saying that he (our son) will come down with Lyme. I will keep a close eye but it is very difficult when there is no sure screening test..You almost have to tell the Dr. you are pretty sure you got bitten and push for the antibiotics to be in the safe side.
Most likely we do and I will have to look into it. My son just told us today he found a tick on the back of his leg at school (engaged). He said it was reddish-brown and the size of a tack head! Can the deer tick get that large? Now my husband is saying that he (our son) will come down with Lyme. I will keep a close eye but it is very difficult when there is no sure screening test..You almost have to tell the Dr. you are pretty sure you got bitten and push for the antibiotics to be in the safe side.
ticker
05-07-2002, 01:03 PM
Saydi, it sounds like your son may have had a lonestar tick, they are reddish-brown. Did he save it? It can be tested for disease. How was it removed? Make sure your son and your family know how to properly remove ticks--with tweezers only. Bring the tweezers as close as possible to where tick is attached to the skin and grasp the mouthparts. Pull it straight back, using steady, gentle pressure. Improper removal can increase the risk of infection.
I don't know what state you are in, but you said there is a high incidence of Lyme there. Try calling your local library, health department, newspaper etc. for information on Lyme support groups and knowledgeable doctors in your area. It is a good idea to see one who has been recommended by someone.
I don't know what state you are in, but you said there is a high incidence of Lyme there. Try calling your local library, health department, newspaper etc. for information on Lyme support groups and knowledgeable doctors in your area. It is a good idea to see one who has been recommended by someone.
Saydi
05-09-2002, 10:28 AM
Tickler,
My son showed me a few photos of ticks at different stages he got off the internet and the one he pointed to was the engorged male deer tick..it was red a big YUCH!!! It looked like it was close to 1/4 of and inch as they had it next to a ruler..which would fit his description of the size of a tac head. Unfortunately he squished it while it was engaged..which we told him (too late) that he should NEVER do that. it let go and he flushed it unfortunately. His Ped. said to keep an eye on the spot, watch him for symptoms and we marked it on the calendar. That's all we can do at this point. My husband is going for blood work Sat. AM for LYME.
My son showed me a few photos of ticks at different stages he got off the internet and the one he pointed to was the engorged male deer tick..it was red a big YUCH!!! It looked like it was close to 1/4 of and inch as they had it next to a ruler..which would fit his description of the size of a tac head. Unfortunately he squished it while it was engaged..which we told him (too late) that he should NEVER do that. it let go and he flushed it unfortunately. His Ped. said to keep an eye on the spot, watch him for symptoms and we marked it on the calendar. That's all we can do at this point. My husband is going for blood work Sat. AM for LYME.
ticker
05-13-2002, 09:19 PM
I am glad you told your son not to squish ticks any more. If you save them, they can be tested for disease. I hope it was not infected.
Do you know which tests were done on your husband?
Do you know which tests were done on your husband?
lira
05-23-2002, 04:14 PM
I don't live in a neighborhood where there is an abundance of deer. However, I have visited friends' homes who live in an area where deer are quite prominent. I also have a pet cat. I'm not sure if any of these could point towards the possibility of having been bit by a tick. But I have at least half of the symptoms that was decribed by "ticker" in the informational document.
What are the chances of having a tick bite that would lead to Lyme disease living in the city? What does a tick bite look like and feel like - would it be painful and visible to the naked eye? Are there any other methods of becoming infected with Lyme disease other than tick bites?
ANY information would help as I'd like to know what I can rule out and what I can suggest to my doctor for having such symptoms. It seems as if my current diagnosis is not all that it is since I'm still feeling many, many symptoms of something. I just don't know what!
What are the chances of having a tick bite that would lead to Lyme disease living in the city? What does a tick bite look like and feel like - would it be painful and visible to the naked eye? Are there any other methods of becoming infected with Lyme disease other than tick bites?
ANY information would help as I'd like to know what I can rule out and what I can suggest to my doctor for having such symptoms. It seems as if my current diagnosis is not all that it is since I'm still feeling many, many symptoms of something. I just don't know what!
ticker
05-23-2002, 05:52 PM
Hi Lira, NY is endemic for Lyme Disease, I believe it has the highest number of cases. Ticks can be found just about everywhere--it is not necessary to be in the woods to be bitten. Ticks inject a numbing agent so you cannot feel them on you. Many people are unaware of being bitten because ticks are so small and will fall off after feeding for some time.
About 50% of people who have Lyme will get a rash that looks like a bullseye. If you suspect Lyme, it is important to see a knowledgeable doctor because no test is completely reliable. Contact local support groups for resources in your area (there are a few listed in the back of the book mentioned).
About 50% of people who have Lyme will get a rash that looks like a bullseye. If you suspect Lyme, it is important to see a knowledgeable doctor because no test is completely reliable. Contact local support groups for resources in your area (there are a few listed in the back of the book mentioned).
YesterdaysChild
07-15-2002, 12:56 AM
Are ticks those kind of bugs that have alot of feet and cling onto your pet and suck their blood? If so, I've definitely been biten many times by them. But it was years ago. I had no immediate symptoms though. Should I get tested anyways even though it must have been 4 years ago?
ticker
07-16-2002, 07:30 PM
YesterdaysChild, ticks have eight legs. They can bite pets and people. Not all ticks are infected. If you are not having symptoms, I see no reason to get tested. No Lyme test is completely reliable.
YesterdaysChild
07-17-2002, 11:27 AM
ticker
thanks for the info. I just wanted to make sure. The ticks I remember getting bitten by were the ones that were sucking blood from my dog. But they would change to a different form after awhile. They would grow bigger and turn into what looked like raisins. Are those the same kinds?
thanks for the info. I just wanted to make sure. The ticks I remember getting bitten by were the ones that were sucking blood from my dog. But they would change to a different form after awhile. They would grow bigger and turn into what looked like raisins. Are those the same kinds?
ticker
07-17-2002, 04:18 PM
Unengorged ticks are very small. As they become engorged (feed on blood), they get bigger and bigger. An engorged dog tick can look like a grape.
rach66
09-16-2002, 01:59 AM
I was just diagnosed with chronic Lyme two days ago. I am 36 and have been sick since I was 17. I am truly one of those people you discussed in your message. I've been treated for CFS and fibro for years. No one ever did a lyme test until two weeks ago--a new doc. I am very discouraged, as it seems there is no successful treatment for this if you've been ill for as long as I have. I have facial tremors that are very unpleasant. Not totally obvious but to me, they are. Do you correspond with anyone who has recovered after being ill as long as I have? If so would you mind telling me what their treatment protocol was? Thanks in advance.
ticker
09-16-2002, 08:22 PM
Rach66, people do get better. Many people have had Lyme for a long time before getting diagnosed. It is not uncommon to feel worse before feeling better when getting treated for tickborne illnesses.
It is very important to see a knowledgeable doctor and be tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella. Many people with Lyme have a co-infection. Having a co-infection will affect treatment choice and progress, and many Lyme doctors believe the co-infections need to be treated first.
There is no one best protcol. Some antibiotics work for some people, and others work for other people.
It is very important to see a knowledgeable doctor and be tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella. Many people with Lyme have a co-infection. Having a co-infection will affect treatment choice and progress, and many Lyme doctors believe the co-infections need to be treated first.
There is no one best protcol. Some antibiotics work for some people, and others work for other people.
rj3
11-10-2002, 11:48 PM
Hi,
I was wondering if people know how prevalent Lyme's is in Britain?
I have just returned from there and have had many of the symptoms mentioned as well as "blotchy" looking skin but don't remember the actual tick as such. I have had hair loss where I thought there may have been a tick as there was a reddish mark which has continued to go up my scalp taking away hair as it goes in a male patterned baldness fashion, although I have no history of baldness in my family. I'm only 22 and a little worried about contiuously losing hair already. Also, I have lost a lot of skin tissue especially around the waistline as the pelvic bone stands out quite markedly now, does this also sound like Lyme's? I have already been told I have a weak immune system by an earlier doctor... any info would be great, thanks
Russell
I was wondering if people know how prevalent Lyme's is in Britain?
I have just returned from there and have had many of the symptoms mentioned as well as "blotchy" looking skin but don't remember the actual tick as such. I have had hair loss where I thought there may have been a tick as there was a reddish mark which has continued to go up my scalp taking away hair as it goes in a male patterned baldness fashion, although I have no history of baldness in my family. I'm only 22 and a little worried about contiuously losing hair already. Also, I have lost a lot of skin tissue especially around the waistline as the pelvic bone stands out quite markedly now, does this also sound like Lyme's? I have already been told I have a weak immune system by an earlier doctor... any info would be great, thanks
Russell
ticker
11-11-2002, 04:29 PM
Russell there is definitely Lyme Disease in England. Hair loss can be caused from Lyme.
If you have a rash, it is a good idea to photograph it. This way you have evidence of it if it fades. When Lyme is a possibility, it is very important to see a knowledgeable doctor.
If you have a rash, it is a good idea to photograph it. This way you have evidence of it if it fades. When Lyme is a possibility, it is very important to see a knowledgeable doctor.
HeyThere
04-20-2003, 05:18 AM
Hi, this is for blaana to read the whole first original post she posted to the skin hair nails forum.
xXBlackRoseXx
05-05-2003, 03:14 PM
Hey I just wanted to know if Lymes disease causes any itchyness because my sister has a rash that looks like it could be lymes but she says it itches alot and she only had 3 of the symptons such as forgetfullness, confusion and diarrhea. She doesn't recall being bitten by a tick but theres a red dot in the middle of the rash. So i was just wondering if it can cause itchyness too??
Renee016
05-08-2003, 10:41 PM
Ticker, I live in NY. Back in about Oct. last year I found what looked like some sort of tick. I had this bump that I was scratching for a while and when I actually looked at it, it looked like a tick - black with some legs (sounds gross). I pulled it out along with some skin - it left like a pit in my skin. Unfortunately, I did not save it.
Since about November I have all these symptoms. I hurt my neck one day raking leaves and thats what started it all (have long history of neck pain). Shortly after I developed weakness in my legs with burning and tingling, which I thought was from muscle relaxers I was taking for my neck so I stopped taking them but did not go away. Long story - trying to make this short: went to orthopedist who sent me to nuerologist and both doctors did a whole bunch of tests and found nothing. Up until now I did not even think of Lyme disease but when I remembered the tick I saw my regular doctor for bloodtest. Came out negative. Now I am highly frustrated! :mad:
Finally an MRI showed a herniated disc in my neck but doctors were very reluctant to think it would cause symptoms in my legs. Eventually one doctor said it was possible and I had surgery.
Meanwhile weakness is back with tingling and burning. Also I get pain behind my knees and on top of feet, pelvic pain where like my thigh meets hip. I also have sore throats constantly - more often than not and a lot of other symptoms on your list.
On top of all this, I was diagnosed with Epstein-Barr virus back in August (which could explain the sore throats)and because of extreme tiredness, dr. said I probably had CFS.
Do you think I should be tested further for Lyme Disease? I heard the simple bloodtest I got was not very reliable. I just don't feel like my doctor has gotten to the bottom of this. At first I was sure it was neck related but now I just don't know. Am I going crazy? I just want to know what this pain and weakness is so I can deal with it. I'm only 36 years old but feel like I'm 80.
Any advice or info would be appreciated.
Thanks, Renee
[This message has been edited by Renee016 (edited 05-08-2003).]
Since about November I have all these symptoms. I hurt my neck one day raking leaves and thats what started it all (have long history of neck pain). Shortly after I developed weakness in my legs with burning and tingling, which I thought was from muscle relaxers I was taking for my neck so I stopped taking them but did not go away. Long story - trying to make this short: went to orthopedist who sent me to nuerologist and both doctors did a whole bunch of tests and found nothing. Up until now I did not even think of Lyme disease but when I remembered the tick I saw my regular doctor for bloodtest. Came out negative. Now I am highly frustrated! :mad:
Finally an MRI showed a herniated disc in my neck but doctors were very reluctant to think it would cause symptoms in my legs. Eventually one doctor said it was possible and I had surgery.
Meanwhile weakness is back with tingling and burning. Also I get pain behind my knees and on top of feet, pelvic pain where like my thigh meets hip. I also have sore throats constantly - more often than not and a lot of other symptoms on your list.
On top of all this, I was diagnosed with Epstein-Barr virus back in August (which could explain the sore throats)and because of extreme tiredness, dr. said I probably had CFS.
Do you think I should be tested further for Lyme Disease? I heard the simple bloodtest I got was not very reliable. I just don't feel like my doctor has gotten to the bottom of this. At first I was sure it was neck related but now I just don't know. Am I going crazy? I just want to know what this pain and weakness is so I can deal with it. I'm only 36 years old but feel like I'm 80.
Any advice or info would be appreciated.
Thanks, Renee
[This message has been edited by Renee016 (edited 05-08-2003).]
ticker
05-10-2003, 04:38 PM
xXBlackRoseXs, not everyone with Lyme gets a rash. For those who do, the rashes can vary. It may or may not be itchy. If she has a bullseye rash, it is definitely Lyme Disease. Take a photograph of her rash, it is important documentation. Place something near it, like a coin or ruler, to give it size defintion. That way you have evidence of it if needed later.
How long ago did she first notice the bite and symptoms?
How long ago did she first notice the bite and symptoms?
ticker
05-10-2003, 04:42 PM
Rene, yes I definitely think you should consider the possibility of Lyme. No Lyme test is completely reliable, and from what I understand the titer (ELISA) is the least reliable and the one most doctors will run. It is very important to see a knoweldgeable doctor.
I understand when you say you feel like 80!
[This message has been edited by ticker (edited 07-01-2003).]
I understand when you say you feel like 80!
[This message has been edited by ticker (edited 07-01-2003).]
tatewin
06-25-2003, 06:25 PM
Anyone know of any good Docs knowledgeable about Lymes in Virginia - Central to western area?
delbarton
06-30-2003, 11:47 AM
i have had some of those symptoms but i have not had fatigue and anything associated with that, and i dont remember getting bit but the shortness of breath and stiffness, headache and nasuea have lasted for about a month now. Should i get checked because this could be anything.
Sick
08-28-2003, 04:39 PM
I'm not sure I have Lyme Disease. I found a tick on me around the 4th of July. A couple of days later I had what I thought was a bruise come up in the same spot where I removed the tick (it hurt and itched). It looked like a bruise except it was just like an oval outline and clear in the middle. It disappeared a few days later so I didn't think anything about it. I started feeling funny about three weeks later. I noticed that my chest and rib cage ached and my left arm and hand ached and tingled (sometimes my ribs feel swollen and the pain moves around). I have also noticed some pain in my neck. I finally went to the doctor and I am waiting on the blood test results and he started me on doxycycline. Do these symptoms sound familiar to anyone else?
Worried-Daughter
09-13-2003, 12:00 AM
I'm so glad to have found this discussion thread, but I'm not sure where to start. I'm posting here about my Mom, who is 71 years old, and was just diagnosed with Lyme Disease. I should give you a brief history (the great imitator, for sure!)
Several months ago, she ended up in the hospital with severe flu-like symptoms (i.e. fever, vomiting, the works...) After much testing, she was found to be anemic, dehydrated, and having two gallstones. Until they could get her feeling better, however, they didn't want to do surgery. While on IV fluids, she started swelling very quickly and ended up in intensive care. Some days later, after she stabilized, and after giving her a blood transfusion (helping the anemia), she was considered strong enough to perform surgery to remove her gall bladder. At that point, they thought it was the source of all her ills. But, it was only the beginning. (FYI, before she went to the hospital, she had a fall due to her leg being weak, and to use her words, the leg "wouldn't hold her weight." And, during that hospital stay, she started complaining about a numbness on the top of her left shin bone, with pain in her groin area.) To shorten this story, she went home to recover from surgery, which she did well.
But, the pain got worse and worse in her leg. It became very severe, and it moved to other areas (groin, back, hip, etc.) She was referred to a neurosurgeon, who said her pain wasn't jiving with her MRI. The disc associated with the pain she felt was fine. They found on a neck MRI, however, that she had 3 herniated discs, which COULD've been causing the pain, but he wasn't sure. So, my poor 71 year old mother had a second surgery in less than 30 days to fuse one of her discs in her neck (only the worst one was the culprit, her neurosurgeon thought.)
Again, she healed well. Now, I've had back surgery, and the pain I experienced in my leg, all the way down to my feet, was almost instantly better after surgery. I mean, the surgical pain was there, but the awful pain that put me under the knife was gone. Not so for Mom. She did get some relief when they put her on steroids while recovering in the hospital, but that has been the only time she's had any relief since this rollercoaster ride began.
Jump forward to today... she is on several different meds that have changed a bunch due to possible complications with her other ailments (diabetes, high blood pressure, etc.) But in a nutshell, she has to take some kind of pain medication every 4 hours or so to keep the pain "broken". If we go over that, she's crying (which is so not in her character!) We're talking Percoset, Oxycontin, earlier on she had a morphine patch, 600 mgs Ibuprofen, which she can't take now because of possible kidney complications... yada yada yada... She's having depression and anxiety symptoms now, which is so painful for all of us to witness. She complains about her skin not feeling right, especially in her left leg. It's like it's hypersensitive. She wants me to rub it for her, but just touching her skin becomes unbearable. She has problems with blankets just lying on her skin. She’s wearing pajama pants that are size 3XL, not because she’s large, but she can’t bear to have anything constrict her stomach. She’s experiencing lots of weird stuff like that – too numerous to mention here.
She tested positive for Lyme titers (I can't remember their technical name), and she's been on Doxycycline. Her neurosurgeon broke the news to her this way.... at her follow-up appt after neck surgery, as she’s sitting in a wheel chair in tears from the pain, he says to her, "I have good news for you... you have Lyme Disease." I guess he meant it's good news because she didn't need low back surgery too, but this is anything but good news. He told me later that if it were his family member, he would have her on Doxycycline at least 3 months, but he only prescribed her for 6 weeks, as this is “beyond the scope of neurosurgery.” Who knows how long she’s had it, as she never had any rash that anyone can remember (just to complicate things.)
Her primary care physician did a follow up test, and found the titers to be decreasing. But, she is still suffering so awfully. I called him today to tell him this, and he wants to wait until next week before he refers her to someone in pain management, just because she is “responding well to the treatment.” Based on what?? The titer reading? Who cares about the reading if she’s still in so much agony!?! He mentioned an infectious disease doctor, but said he/she would do the same things he is doing.
After reading some of the posts here, I’m wondering if she has secondary infections… But, wouldn’t they be treated with the same antibiotic as the Lyme? And, I asked about IV antibiotics, but her doctor told me that’s only when there’s heart involvement, which I guess, she doesn’t have. But, I’m not even sure if they’ve done tests on her heart…
What should I do for her at this point? Should I post my verbose message somewhere else??? I just feel so helpless to do anything for her. I look at pictures of my Mom six months ago, helping me with my 10 month old (now 16 mo old) daughter – she was such an active, happy woman; loving to play with her newest grandchild. She's been reduced to a suffering, miserable, barely existing person - losing weight, and hating her life. Just recounting this has brought tears to my eyes. Where do we go from here????
Several months ago, she ended up in the hospital with severe flu-like symptoms (i.e. fever, vomiting, the works...) After much testing, she was found to be anemic, dehydrated, and having two gallstones. Until they could get her feeling better, however, they didn't want to do surgery. While on IV fluids, she started swelling very quickly and ended up in intensive care. Some days later, after she stabilized, and after giving her a blood transfusion (helping the anemia), she was considered strong enough to perform surgery to remove her gall bladder. At that point, they thought it was the source of all her ills. But, it was only the beginning. (FYI, before she went to the hospital, she had a fall due to her leg being weak, and to use her words, the leg "wouldn't hold her weight." And, during that hospital stay, she started complaining about a numbness on the top of her left shin bone, with pain in her groin area.) To shorten this story, she went home to recover from surgery, which she did well.
But, the pain got worse and worse in her leg. It became very severe, and it moved to other areas (groin, back, hip, etc.) She was referred to a neurosurgeon, who said her pain wasn't jiving with her MRI. The disc associated with the pain she felt was fine. They found on a neck MRI, however, that she had 3 herniated discs, which COULD've been causing the pain, but he wasn't sure. So, my poor 71 year old mother had a second surgery in less than 30 days to fuse one of her discs in her neck (only the worst one was the culprit, her neurosurgeon thought.)
Again, she healed well. Now, I've had back surgery, and the pain I experienced in my leg, all the way down to my feet, was almost instantly better after surgery. I mean, the surgical pain was there, but the awful pain that put me under the knife was gone. Not so for Mom. She did get some relief when they put her on steroids while recovering in the hospital, but that has been the only time she's had any relief since this rollercoaster ride began.
Jump forward to today... she is on several different meds that have changed a bunch due to possible complications with her other ailments (diabetes, high blood pressure, etc.) But in a nutshell, she has to take some kind of pain medication every 4 hours or so to keep the pain "broken". If we go over that, she's crying (which is so not in her character!) We're talking Percoset, Oxycontin, earlier on she had a morphine patch, 600 mgs Ibuprofen, which she can't take now because of possible kidney complications... yada yada yada... She's having depression and anxiety symptoms now, which is so painful for all of us to witness. She complains about her skin not feeling right, especially in her left leg. It's like it's hypersensitive. She wants me to rub it for her, but just touching her skin becomes unbearable. She has problems with blankets just lying on her skin. She’s wearing pajama pants that are size 3XL, not because she’s large, but she can’t bear to have anything constrict her stomach. She’s experiencing lots of weird stuff like that – too numerous to mention here.
She tested positive for Lyme titers (I can't remember their technical name), and she's been on Doxycycline. Her neurosurgeon broke the news to her this way.... at her follow-up appt after neck surgery, as she’s sitting in a wheel chair in tears from the pain, he says to her, "I have good news for you... you have Lyme Disease." I guess he meant it's good news because she didn't need low back surgery too, but this is anything but good news. He told me later that if it were his family member, he would have her on Doxycycline at least 3 months, but he only prescribed her for 6 weeks, as this is “beyond the scope of neurosurgery.” Who knows how long she’s had it, as she never had any rash that anyone can remember (just to complicate things.)
Her primary care physician did a follow up test, and found the titers to be decreasing. But, she is still suffering so awfully. I called him today to tell him this, and he wants to wait until next week before he refers her to someone in pain management, just because she is “responding well to the treatment.” Based on what?? The titer reading? Who cares about the reading if she’s still in so much agony!?! He mentioned an infectious disease doctor, but said he/she would do the same things he is doing.
After reading some of the posts here, I’m wondering if she has secondary infections… But, wouldn’t they be treated with the same antibiotic as the Lyme? And, I asked about IV antibiotics, but her doctor told me that’s only when there’s heart involvement, which I guess, she doesn’t have. But, I’m not even sure if they’ve done tests on her heart…
What should I do for her at this point? Should I post my verbose message somewhere else??? I just feel so helpless to do anything for her. I look at pictures of my Mom six months ago, helping me with my 10 month old (now 16 mo old) daughter – she was such an active, happy woman; loving to play with her newest grandchild. She's been reduced to a suffering, miserable, barely existing person - losing weight, and hating her life. Just recounting this has brought tears to my eyes. Where do we go from here????
bicec
09-17-2003, 10:45 PM
Is there a way to find a knowledgeable Dr in Northern NJ?
------------------
wjc
------------------
wjc
rockland
09-17-2003, 11:25 PM
Originally posted by ticker:
I correspond with people from all over who have Lyme Disease and other tickborne illnesses. A large percentage of them were first diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. They suffered for years and then found out that they have Lyme Disease. These diseases, like Fibromyalgia and Chronic Fatigue Syndrome, are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state except Montana.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
I correspond with people from all over who have Lyme Disease and other tickborne illnesses. A large percentage of them were first diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. They suffered for years and then found out that they have Lyme Disease. These diseases, like Fibromyalgia and Chronic Fatigue Syndrome, are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state except Montana.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
rockland
09-17-2003, 11:28 PM
Do you know of a good Lyme Doctor in the Rockland County New York area? I recently tested positive for Lyme (Western Blot) and have been on doxcycline for three weeks at a 200mg per day rate.
I still have fatigue, lightheadedness, interuptted sleep, discomfort in the gland , neck and shoulders. When do these symptoms improve? thanks!
I still have fatigue, lightheadedness, interuptted sleep, discomfort in the gland , neck and shoulders. When do these symptoms improve? thanks!
rockland
09-18-2003, 07:02 PM
Ticker, after reading all of these notes, I see that there is no common ABX protocol. Do you have any idea why the CDC in Atlanta does not publish the proper doses of Doxycycline and for what period of time? This would standardize what these Doctors are doing and probably help a lot of people.
I am new to this and also received 200mg per day for three weeks but still have the fatigue,etc. that everyone speaks of. I am going to a Lyme Special;ist on Monday because I lost confidence in my current two Doctors.
Thanks!
I am new to this and also received 200mg per day for three weeks but still have the fatigue,etc. that everyone speaks of. I am going to a Lyme Special;ist on Monday because I lost confidence in my current two Doctors.
Thanks!
alabamalymie
09-19-2003, 11:04 AM
you seem to be the one in the know. I have been on doxy for six weeks. My Rash on my legs is spreading quickly. Does this happen even if you are on doxy?
ticker
09-22-2003, 07:48 PM
Rockland are you closer to Armonk, East Hampton, or Hyde Park?
ticker
09-22-2003, 07:53 PM
Rockland, there is no one best antibiotic for everyone but effective treatment is longer than what most doctors and the CDC prescribe. I believe they are following outdated protocols that was though to be effective treatment when Lyme was first discovered, but now it is evident that longer treatment is needed. Indepth reasearch needs to be done on tickborne illnesses, treatment, and improved testing.
How did your appointment go?
How did your appointment go?
ticker
09-22-2003, 07:55 PM
Alabamalymie, make sure to get photos of your rash. Place something near it, like a coin or ruler, to give it size defintion. That way you have evidence of it if needed later.
What dose of Doxy are you taking? Have you been tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella?
What dose of Doxy are you taking? Have you been tested for the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella?
alabamalymie
09-25-2003, 03:14 PM
Ticker,
I started with arthritis symptoms in Jan 2002. In June of that year I had a rash on my neck Doc treated me for shingles. My feet started cracking and I had two places on the side of my leg which Dermatologist thought was Psoriasis. Got two more spots one on each leg.
Once I started the doxy my rash has gotten worse. Most of my other symptoms are better. I do not fell like I am WELL by any means. I was only tested ( elisa and western blot) this week. My Rheumatologist says doxy helps some inflamatory arthritis so he left me on it. Wheter the test come back positive or not I have no doubt that I have lyme. I think I got it in 1983 and it just kicked in last year.
Thanks for your reply
ala
I started with arthritis symptoms in Jan 2002. In June of that year I had a rash on my neck Doc treated me for shingles. My feet started cracking and I had two places on the side of my leg which Dermatologist thought was Psoriasis. Got two more spots one on each leg.
Once I started the doxy my rash has gotten worse. Most of my other symptoms are better. I do not fell like I am WELL by any means. I was only tested ( elisa and western blot) this week. My Rheumatologist says doxy helps some inflamatory arthritis so he left me on it. Wheter the test come back positive or not I have no doubt that I have lyme. I think I got it in 1983 and it just kicked in last year.
Thanks for your reply
ala
ticker
10-11-2003, 12:44 PM
alabamalymie, what dose of Doxy are you taking?
You need to be tested for the co-infections that ticks can transmit, because many people who have Lyme are co-infected.
You need to be tested for the co-infections that ticks can transmit, because many people who have Lyme are co-infected.
suzitwo
03-17-2004, 05:09 PM
Bringing this thread to the top.
This is interesting for me you see I was bitten by something when I was on holiday in Florida last summer (I'm from the UK) I thought it was the usual mosquito bites which I always, always get no matter what but a week after I got home I got up one morning to find the bite sites inflamed again and there was that bullseye rash there. I had 4 bites like this.
I'm currently having my bloods tested for thyroid, iron, folate and hormones (I thought it could be premature menopause as there is a family history) and I didn't think to say to my doc. I had been down to see him but he wasn't there it was a locum that saw me, saw the rash and said if it didn't go away to go back. My GP probably still doesn't know anything about it.
I've got a lot of the symptoms described here and had a particularly bad episode of chest pain that I've never experienced before, it felt like a heart attack at the time.
I think I'll mention it to him when I go back for the results.
Thanks for putting this up. :)
This is interesting for me you see I was bitten by something when I was on holiday in Florida last summer (I'm from the UK) I thought it was the usual mosquito bites which I always, always get no matter what but a week after I got home I got up one morning to find the bite sites inflamed again and there was that bullseye rash there. I had 4 bites like this.
I'm currently having my bloods tested for thyroid, iron, folate and hormones (I thought it could be premature menopause as there is a family history) and I didn't think to say to my doc. I had been down to see him but he wasn't there it was a locum that saw me, saw the rash and said if it didn't go away to go back. My GP probably still doesn't know anything about it.
I've got a lot of the symptoms described here and had a particularly bad episode of chest pain that I've never experienced before, it felt like a heart attack at the time.
I think I'll mention it to him when I go back for the results.
Thanks for putting this up. :)
Komondor
03-18-2004, 12:55 PM
alabamalymie
Does your rash on your neck fade in color? I have a rash on my neck too and the darn thing has never gone away. I have Babesia, Lyme and Bartonella and am wondering which one causes this...
Sometime is hurts. My boss thought is was a hicky last year which cracked me up. I am 37 and a little old to have a hicky. Some days it is barely noticable and then it gets much darker then fades again.
The rash appeared after something bit me that I never saw and have since talked to many that say a deer tick can cause a very sharp pinch when it bites and naturally that is what the bite felt like.
I have been bitten by many things as I was raised on a farm... and this bite was not like any other I have experienced. I have found many many ticks on me but never had one hurt when it bit...
I also got a nasty place on my upper back shortly after the bite that took 2 months to completely heal. Then came a year of total misery... Overall I am feeling much better since getting the babs under control and waiting for that darn rash to go away...
Does your rash on your neck fade in color? I have a rash on my neck too and the darn thing has never gone away. I have Babesia, Lyme and Bartonella and am wondering which one causes this...
Sometime is hurts. My boss thought is was a hicky last year which cracked me up. I am 37 and a little old to have a hicky. Some days it is barely noticable and then it gets much darker then fades again.
The rash appeared after something bit me that I never saw and have since talked to many that say a deer tick can cause a very sharp pinch when it bites and naturally that is what the bite felt like.
I have been bitten by many things as I was raised on a farm... and this bite was not like any other I have experienced. I have found many many ticks on me but never had one hurt when it bit...
I also got a nasty place on my upper back shortly after the bite that took 2 months to completely heal. Then came a year of total misery... Overall I am feeling much better since getting the babs under control and waiting for that darn rash to go away...
pffog
03-19-2004, 02:33 PM
Hi Ticker, I've read through a lot of your posts. You seem to be really knowledgeable of Lymes and I appreciate your willingness to share what you know. I've suffered with a "phantom" illness for 21 years... No need to give all of the history of misdiagnoses, thousands of wasted dollars on tests and supplements... I was just diagnosed with Lymes. Now this monster has a name anyway!
I am currently taking 400mg of Doxy, 1500 mg of Amoxy as well as Flagyl and various supplements. My doctor wants me on this program for the next 12 weeks. I was just wondering when I can expect to see some improvement. I'm only in my first week and am tolerating the drugs pretty well so far.
I would encourage anyone on these high dosages of antibiotics to be sure they take an acidophilus supplement as well as eat lots of plain yogurt.
thanks for your help-
I am currently taking 400mg of Doxy, 1500 mg of Amoxy as well as Flagyl and various supplements. My doctor wants me on this program for the next 12 weeks. I was just wondering when I can expect to see some improvement. I'm only in my first week and am tolerating the drugs pretty well so far.
I would encourage anyone on these high dosages of antibiotics to be sure they take an acidophilus supplement as well as eat lots of plain yogurt.
thanks for your help-
ticker
03-20-2004, 03:48 PM
pffog, thank you!
I am glad you finally have a diagnosis. I know it is a relief to have validation for the problems you have had. It sounds like you are getting aggressive treatment, which is good. Make sure you take the acidophilus and/or yogurt at least two hours before or after the antibiotics or the med(s) will not absorbed properly. This can be hard to juggle, but it can be done.
It is impossible to say when you may feel improvement. This disease affects everyone differently and it can take time to find the best med(s) for each case. It is not unusual to feel worse before feeling better when being treated for Lyme Disease. Were you tested for all the co-infections that ticks can transmit? This is very important.
Be prepared for the Jarisch-Herxheimer Reaction (herx). Often, when people with Lyme take antibiotics their symptoms may become worse or they may get new ones. The antibiotics are killing the bacteria, which release toxins, making them feel worse. It is very scary when it happens, but it is a good sign the antibiotics are working. Many people experience this reaction approximately every four weeks, but again this can vary with each person.
Good luck!
I am glad you finally have a diagnosis. I know it is a relief to have validation for the problems you have had. It sounds like you are getting aggressive treatment, which is good. Make sure you take the acidophilus and/or yogurt at least two hours before or after the antibiotics or the med(s) will not absorbed properly. This can be hard to juggle, but it can be done.
It is impossible to say when you may feel improvement. This disease affects everyone differently and it can take time to find the best med(s) for each case. It is not unusual to feel worse before feeling better when being treated for Lyme Disease. Were you tested for all the co-infections that ticks can transmit? This is very important.
Be prepared for the Jarisch-Herxheimer Reaction (herx). Often, when people with Lyme take antibiotics their symptoms may become worse or they may get new ones. The antibiotics are killing the bacteria, which release toxins, making them feel worse. It is very scary when it happens, but it is a good sign the antibiotics are working. Many people experience this reaction approximately every four weeks, but again this can vary with each person.
Good luck!
pffog
03-23-2004, 01:17 PM
Thanks Ticker - Yes I was tested for the other co-infections - negative, thankfully. I'm almost looking forward to the Jar/Herx reaction - just to know something's killing these little guys!! take care, pffog
ticker
03-26-2004, 05:48 PM
pffog I am glad that you do not have any co-infections, one infection is enough! Good luck with your treatment.
LymeLady
06-23-2004, 12:27 PM
hi,
I was dx in august of 2003 thru lab work with lyme disease and was tx on a 3 week course of antibiots...erthromycin...no help...retreated for 2 months (11/03-12/03) and i am back sliding everyday. i am allergic to tetracycline and pen. so they said i didn't have many choices. my last titer was negative (june 7, 2004), but i have most of the symptoms you stated and am getting worse. if my titer is now negative, does that mean ther is no lyme disease left?? they now want me to see an infectious disease dr, but not sure why. any direction you can give me would be so appreciated. the drs. and i believe i contracted the disease any where from 3 months to 1 year prior to be dx.....either in cape cod, mass or nova scotia. did have bite marks both times, but not bullseye rash, but did not know about lyme at that time.
look forward to your help.
many thanks,
lymelady!!
I was dx in august of 2003 thru lab work with lyme disease and was tx on a 3 week course of antibiots...erthromycin...no help...retreated for 2 months (11/03-12/03) and i am back sliding everyday. i am allergic to tetracycline and pen. so they said i didn't have many choices. my last titer was negative (june 7, 2004), but i have most of the symptoms you stated and am getting worse. if my titer is now negative, does that mean ther is no lyme disease left?? they now want me to see an infectious disease dr, but not sure why. any direction you can give me would be so appreciated. the drs. and i believe i contracted the disease any where from 3 months to 1 year prior to be dx.....either in cape cod, mass or nova scotia. did have bite marks both times, but not bullseye rash, but did not know about lyme at that time.
look forward to your help.
many thanks,
lymelady!!
ticker
06-23-2004, 08:16 PM
Hi lymelady, I am sorry you are still sick. To me it sounds like you were not treated long enough or aggressively enough. Two months of treatment is not long enough for Lyme, especially if you have been sick for three months to a year. No Lyme test is completely reliable, and from what I under stand the ELISA or titer is the least reliable of all. You are still having symptoms, you need to be treated. Most Lyme doctors will continue treating for at least two months after the person has been symptom free.
Often, infectious disease doctors are not the best to see regarding Lyme. Many doctors follow outdated treatment protocols. It is very important to see a knowledgeable doctor. Besides Lyme, ticks can transmit co-infections--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. Many people who have Lyme are co-infected, so it is important to be tested for these. Have you ever been tested for them?
Although a bullseye rash is a definite sign of Lyme, only about 50% of people with Lyme ever get one. Where do you live?
Often, infectious disease doctors are not the best to see regarding Lyme. Many doctors follow outdated treatment protocols. It is very important to see a knowledgeable doctor. Besides Lyme, ticks can transmit co-infections--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. Many people who have Lyme are co-infected, so it is important to be tested for these. Have you ever been tested for them?
Although a bullseye rash is a definite sign of Lyme, only about 50% of people with Lyme ever get one. Where do you live?
LymeLady
06-25-2004, 04:46 PM
thanks for responding. i wrote twice...1st time i didn't think i sent it correctly, so this morning i sent again with alittle different info. anyway, i have not been tx since last jan. the dr i saw on 6/7 said he was going to do iv tx after he saw my lab work even if it came back negative...i was encouraged, but now he says no i think it is your neck. these people give me a different song every time i see or talk with them. my big concerns are memory. chronic fatigue, change in ekg...av block, but dr thinks that may be due to bp meds, although i've been on the same bp meds for years with no problem, every bone in my body aches to the point i can't do much, but sleep doesn't come easy, vertigo that drives me crazy, hair loss and you name it. i told the dr i think sometimes i'm losing my mind, because i feel so terrible all of the time. if my titer is now negative, maybe i should be happy and just move on.....cervical surgery scares me especially the way i feel. oh, i live outside syracuse, new york, but spend alot of time on the cape and my friends there have alot of ticks on their dogs. well i am starting to ramble. if youknow anyone in central ny, please let me know.
again, thanks for your time.
lymelady
again, thanks for your time.
lymelady
Komondor
06-25-2004, 05:37 PM
Hi Lymelady,
Please see an LLMD and get proper testing before having the surgery. It is very possible you have a co-infection on top of lyme. Ticker will be along shortly to give you the name of an LLMD in NY. There is Dr. Kenneth Liegner in Armonk, NY but there may be another closer to you as I do not know the area well.
I hope you are feeling better very soon.
Stacey
Please see an LLMD and get proper testing before having the surgery. It is very possible you have a co-infection on top of lyme. Ticker will be along shortly to give you the name of an LLMD in NY. There is Dr. Kenneth Liegner in Armonk, NY but there may be another closer to you as I do not know the area well.
I hope you are feeling better very soon.
Stacey
smallpackage
06-25-2004, 06:42 PM
Hi guys. I haven't been here for awhile..since then a lot has happened.
I went to a man named Dr.Bach (one of the top lyme doctors on the US east coast) and since then I have found out a whole lot. For one (which I'm sure its all ready mentioned in this topic), Fibromyalgia is a made up disease. Its what they use as an exuse so they insurance companies don't have to pay for your long term medication that you need. He 1st told me to lay down on his table, and as usual, my legs and feet twist in opposite directions, which I always thought was normal. Lyme is causing it. Theres so much to tell, but I'll get back to reason why I want to post this.
I was diagnosed with ADD (which they count as ADHD now) for seeming a bit slow in the head. When I found out I was born with lyme, and it slows down my whole body making me slow in every possible way...I realized I don't have it.
I always had little pimples on the sides of my arms, I never knew what they were, thought just a little deformidy from birth. That's also caused by lyme disease...
I'll let a bit more out shortly...theres a storm and I need to turn this off.
I went to a man named Dr.Bach (one of the top lyme doctors on the US east coast) and since then I have found out a whole lot. For one (which I'm sure its all ready mentioned in this topic), Fibromyalgia is a made up disease. Its what they use as an exuse so they insurance companies don't have to pay for your long term medication that you need. He 1st told me to lay down on his table, and as usual, my legs and feet twist in opposite directions, which I always thought was normal. Lyme is causing it. Theres so much to tell, but I'll get back to reason why I want to post this.
I was diagnosed with ADD (which they count as ADHD now) for seeming a bit slow in the head. When I found out I was born with lyme, and it slows down my whole body making me slow in every possible way...I realized I don't have it.
I always had little pimples on the sides of my arms, I never knew what they were, thought just a little deformidy from birth. That's also caused by lyme disease...
I'll let a bit more out shortly...theres a storm and I need to turn this off.
vultch11
06-29-2004, 09:40 AM
Dear Ticker,
Over the last 10+ months I've had a variety of the symptoms you described in you list for Lyme's disease. My problems have included back, chest, and arm pain (mostly left side of body), neck pain and headaches, heart palpitations, and severe fatigue. I've had many heart tests done (all normal except Cardiac CRP) and was sent to a neurologist who as a last resort decided to test for Lyme's. (I live in a low risk area) My ELISA test came back positive (Level was 1.13) Can this level tell me how severe of a case it is? Or when I may have been bitten? I never had the bullseye rash that most people get. I had a west blot test done yesterday and am still waiting for the results. About 8 months ago I had a Cardiac CRP test done that came back 9.9 which is extremely high. Could this be an indicator of Lyme's also? If the West Blot comes back positive and I'm treated with antibiotics, how likely is it that all my other problems will go away?
Thanks for your help.
Over the last 10+ months I've had a variety of the symptoms you described in you list for Lyme's disease. My problems have included back, chest, and arm pain (mostly left side of body), neck pain and headaches, heart palpitations, and severe fatigue. I've had many heart tests done (all normal except Cardiac CRP) and was sent to a neurologist who as a last resort decided to test for Lyme's. (I live in a low risk area) My ELISA test came back positive (Level was 1.13) Can this level tell me how severe of a case it is? Or when I may have been bitten? I never had the bullseye rash that most people get. I had a west blot test done yesterday and am still waiting for the results. About 8 months ago I had a Cardiac CRP test done that came back 9.9 which is extremely high. Could this be an indicator of Lyme's also? If the West Blot comes back positive and I'm treated with antibiotics, how likely is it that all my other problems will go away?
Thanks for your help.
ticker
06-29-2004, 10:49 PM
Hi vultch11. There really is no low risk area of Lyme. A lot of people in the medical community falsely believe this. Lyme disease is the second fastest growing infectious disease in the US after AIDS. It is in every state.
You have a positive test and symptoms. You need to be treated. It is extremely important to see a knowledgeable doctor. Lyme needs long-term aggressive treatment. Undertreated or untreated Lyme disease can be very serious.
Besides Lyme, ticks can also transmit co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is very important to be tested for these because many people with Lyme are co-infected. To me, many of your symptoms sound like Lyme and Babesiosis.
Where do you live?
You have a positive test and symptoms. You need to be treated. It is extremely important to see a knowledgeable doctor. Lyme needs long-term aggressive treatment. Undertreated or untreated Lyme disease can be very serious.
Besides Lyme, ticks can also transmit co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is very important to be tested for these because many people with Lyme are co-infected. To me, many of your symptoms sound like Lyme and Babesiosis.
Where do you live?
vultch11
06-30-2004, 08:56 AM
Thanks for the response.....I live in TX.
ticker
06-30-2004, 11:24 AM
Hi vultch11, I am happy to help. There is an excellent Lyme doctor in Houston. His name is Dr. Bill Harvey. I hope you can get in to see him.
vultch11
06-30-2004, 03:30 PM
Ticker, I just found out that my Western Blot came back negative. Is there any chance the Blot is wrong? If not do you know anything else that could cause me to have an ELISA of 1.13? I'm miserable and just when I thought I had hope for getting better. Please help me.
ticker
06-30-2004, 06:15 PM
vultch11 do you have copies of your western blot results? If you have a copy, give me a breakdown of the bands. What lab ran the test? Remember, no Lyme test is completely reliable and results can vary by lab. It is best to have the test done at a Lyme lab such as IgeneX in Palo Alto, CA. Even though the CDC requiries a large number of bands to show for the western blot to be positive, most Lyme doctors focus on which bands show. Some are specific for Lyme.
You already have a positive test and symptoms. You need to get to a Lyme doctor asap to get treated. I hope you can see the one in your area.
You already have a positive test and symptoms. You need to get to a Lyme doctor asap to get treated. I hope you can see the one in your area.
suzy smythe
07-07-2004, 02:20 PM
Hi--thanks for the great info here:) I recently went camping and now have a strange rash....I read a few stories where people went to a great specialist in Tampa but I never found his name--Can anyone tell me a good doctor in Tampa who knows Lyme well? I don't have a regular doctor and hate to just go to the Walk In Clinic. I mean, hopefully its nothing but Lyme sounds scary and I'd rather not wait it out! Thanks for any help!
Suzy in Tampa--Oh my [ removed ] Thank you:)
Suzy in Tampa--Oh my [ removed ] Thank you:)
ticker
07-17-2004, 08:56 PM
Hi Suzy, I am sorry I did not see your post sooner. Make sure you get photos of your rash. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later.
You are right that it is important to see a knowledgeable doctor. The Lyme doctor near Tampa is Dr. Michael Cichon. Make sure you also get tested for the co-infections that ticks can transmit--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. Many people who are Lyme are co-infected.
Please post on how you are doing.
You are right that it is important to see a knowledgeable doctor. The Lyme doctor near Tampa is Dr. Michael Cichon. Make sure you also get tested for the co-infections that ticks can transmit--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. Many people who are Lyme are co-infected.
Please post on how you are doing.
PVH10
07-31-2004, 09:17 PM
Dear Ticker: I have been reviewing the Lymes Disease information and have not been able to find a connection between LD and an enlarged liver. My husband has been suffering from joint pain, muscle weakness and severe pain in his shoulders. He has several of the symptons but does not remember being bitten. We have a cottage in Clarion County, Pa., he cuts the grass, hunts and walks in the woods. He is just beginning to be diagnosed (last week) and one of the blood test ordered was for Rhumatoid. My daughter-in-law suggested we research LD. Any comment or suggestion would be welcome. Thanks in advance. pvh10
ticker
07-31-2004, 11:06 PM
Hi pvh10. I am very sorry your husband is sick.
Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you. When Lyme is a possibility it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme. No Lyme test is completely reliable. From what I understand the one most doctors run first, the ELISA or titer, is the least reliable of all. A knowledgeable doctor will consider your husband's entire history.
Besides Lyme disease, ticks can also transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected.
I believe the PA has the third highest number of Lyme cases in the country. I highly recommend that he gets evaluated by a Lyme knoweldgeable doctor. There are not many. I know of one who comes highly recommended in Hermitage. Would you like his name?
Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you. When Lyme is a possibility it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme. No Lyme test is completely reliable. From what I understand the one most doctors run first, the ELISA or titer, is the least reliable of all. A knowledgeable doctor will consider your husband's entire history.
Besides Lyme disease, ticks can also transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected.
I believe the PA has the third highest number of Lyme cases in the country. I highly recommend that he gets evaluated by a Lyme knoweldgeable doctor. There are not many. I know of one who comes highly recommended in Hermitage. Would you like his name?
monicarenea
08-02-2004, 07:31 PM
I correspond with people from all over who have Lyme Disease and other tickborne illnesses. Lyme Disease is known as the great imitator because its symptoms mimic those of many other diseases. Many people who have Lyme, were first diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, MS, ALS or other diseases. They suffered for years and then found out that they have Lyme Disease. Like the other diseases mentioned, tickborne illnesses are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease at IgeneX lab in Palo Alto, CA.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.
Below is a Lyme Disease symptom list:
SYMPTOM CHECK LIST
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Ticks can also transmit several serious co-infections:
--Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.
--Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.
--Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission
Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
http://www.lyme.org/gallery/rashes.html
http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html
The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.
Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.
If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease at IgeneX lab in Palo Alto, CA.
I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.
[This message has been edited by moderator1 (edited 04-04-2002).]
monicarenea
08-02-2004, 07:37 PM
TICKER-YOU CAN ALSO ADD DRY EYES AND DRY MOUTH TO THAT LIST OF SYMPTOMS. MY EYE DOCTOR WAS THE FIRST TO MENTION LYMES TO ME
BECAUSE OF THE DRY EYES.
MY "LYMES SPECIALIST" HAS ME ON DOXY 200MG DAILY FOR 6 MONTHS. MY SYMPTOMS ARE BETTER BUT STILL PRESENT. TWO MONTHS AGO I HAD ONE IGg BAND POSITVE FOR LYMES AND NOW I HAVE NONE. SHE STILL WANTS TO CONTINUE WITH THE DOXY AND NOT DO IV ROCEPHIN BUT I STILL FEEL BAD! I WAS ALSO EXPOSED TO MYCOPLASMA. ANY SUGGESTIONS?
BECAUSE OF THE DRY EYES.
MY "LYMES SPECIALIST" HAS ME ON DOXY 200MG DAILY FOR 6 MONTHS. MY SYMPTOMS ARE BETTER BUT STILL PRESENT. TWO MONTHS AGO I HAD ONE IGg BAND POSITVE FOR LYMES AND NOW I HAVE NONE. SHE STILL WANTS TO CONTINUE WITH THE DOXY AND NOT DO IV ROCEPHIN BUT I STILL FEEL BAD! I WAS ALSO EXPOSED TO MYCOPLASMA. ANY SUGGESTIONS?
ticker
08-02-2004, 09:44 PM
Monicarenea, I have dry eyes also.
200 mg of Doxy is not strong enough for Lyme. The single most important thing you can do is to see a knowledgable doctor. Lyme needs aggressive treatment. Undertreated Lyme can be serious. You need to be tested for all the co-infections because if you are co-infected it will affect treatment choice and progress. Also, many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case.
I hope you can get to a knowledgeable doctor soon.
200 mg of Doxy is not strong enough for Lyme. The single most important thing you can do is to see a knowledgable doctor. Lyme needs aggressive treatment. Undertreated Lyme can be serious. You need to be tested for all the co-infections because if you are co-infected it will affect treatment choice and progress. Also, many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case.
I hope you can get to a knowledgeable doctor soon.
joy90
08-12-2004, 04:37 PM
I was just wondering if anyone knows what the numbers are supposed to mean on a lymes titer test. I received my old lab papers i ordered from back in 1987 and it says my lymes titer was 1.64 not sure what that means can anyone help me?
ticker
08-12-2004, 07:56 PM
Hi joy90. Is there a numerical range on your test result? I believe that for the ELISA anything over 1.00 is positive. I do not know if this is true from 1987 or if the range varies by the lab used. If there is no range listed, I suggest calling the lab and asking if their values are the same now as they were in 1987. Then you can ask what result would be positive.
dannywjohnson
08-18-2004, 01:08 AM
About two days ago, after returning from our evacuation due to Hurricane Charley, I noticed that a large amount of bugs had gotten into the house. Our house was not damaged during the hurricane but it apparently had stirred up insect life in the neighborhood. One thing we noticed was brown recluse spiders as well as mosquitos being more active on our front porch. I noticed I had a small mosquito bite on my right arm, which itched a little bit, but I did not notice until three hours later but the bite had become a huge red rash with swelling - my roommate noticed it and it was about two inches large at the site of the bite. I took Benadryl and allergy medication thinking it was an allergic reaction. I researched it on the internet that night and kept coming up with West Nile, Lyme disease, or a brown recluse spider bite as the only possible explanations. The rash however, has no purplish tone to it (a spider bite) or a bullseye look to it (lyme). I also have not been feeling any flu symptoms or headaches. The rash does not even itch now, nor does it hurt. The night I researched it it was two inches wide and grew to three inches wide by morning. The following day the swelling appeared to be going down - the redness was dissappearing but my arm was still enlarged. I have noticed that the swelling has subtley started "traveling" - its now wrapping around the front of the arm now, and is now about five inches wide. My neighbor is a nurse and said it does not appear to be a spider bite, or Lyme Disease. West Nile is the most likely candidate since there are a lot of mosquitos about (we live right on Tampa Bay and a swamp is across the street from the house). She also said its even remotely possible to be a cutaneous anthrax infection, which is similiar to bug bites, but I do not live on a farm and have no idea how that could be a possibility. She said ringworm would be possible if the rash continues progressing, but she examined my arm and says she does not think thats a possibility either at this point. The rash is much larger than any ringworm infection she has seen. One other note: my roommate was hospitalized with cat scratch fever a few months back - one of the co-infections for Lyme Disease. Does Lyme Disease always have to have the symptoms listed, and include a bullseye rash? I do not have any of the symptoms listed on this page except for the rash, which looks nothing like the pictures of Lyme rash I have seen before.
laurie864bla
08-18-2004, 10:17 AM
Hi. Just some info--also a nurse--cutaneous anthrax has a black center, and you have virtually no way of getting that. You would be very ill with a bite from a brown recluse by now. West nile I am not that familiar with, but I do not think a large swollen rash that spreads is one of the symptoms--bad h'ache is. Also, bullseye rash's are something ironically we all on this board wish we had at some point b/c it will be believed to be Lyme. BUT--not everyone gets one--less than 50% some say. They certainly can look very different from one another and my son even had many of them at one time well after being infected. Get to a lyme literate doc as soon as possible, and take a picture of your rash today w/ something next to it for sizing. You would probably be a symptomatic, at least for a time, as many people are. Don't believe the so called experts on Lyme that tell you the bullseye, or bite site, does not itch either. Many, many people who have had it say that it most certainly does itch for a time. Please go see a good doc. Glad to hear you made it thru Charley ok!! --laurie
Lymey
08-26-2004, 07:02 PM
First, i would like to thank TICKER for taking the time to get so much important information out there to people. I can see a number of people have already benefited from it. Lyme is truly 'the great imitator'. I have known so many people who have been misdiagnosed with MS and a host of other autoimmune diseases before finding out they had Lyme. Please read Tickers symptom list. If you have any of them, please seek THE PROPER TYPE OF DOCTOR. My personal suggestion is to start with an infectious disease specialist and get tested not only for Lyme but the co-infections on Tickers list as well. If positive, u can stay with them, but preferably seek a Lyme Specialist if one is near you. Also, make sure you're on the medicine LONG enough-big mistake that many docs make. A few weeks usually doesn't cut it.
I originally went to my regular doctor (GP) in 2002 with many of the symptoms listed (minus the rash). He finally diagnosed me with Lyme & treated me with doxycycline for 3 weeks (ideally, it should be at least 4-6 weeks). I was re-tested, and told I was fine. I went home & thought nothing more of it.
A year later (after never feeling 100%), I was severe again, and went to a specialist. He got the lab results from my other doc and said the titers had still been high enough that I should have continued the doxy. I still had it all that time! And who's to think the doc we go to for everything wouldn't know what they're talking about? Why wouldn't they refer you to a specialist? But they can't know everything and that's why there are specialists out there for diseases like this. Because of my new doc, I also found out I had Ehrlichiosis & Bartonella. I have talked to more than a few people that experienced the same thing so please seek proper medical attention.
I had been treated with numerous anti-biotics with little success until I got the IV (Rocephin), which I did for 8 weeks. After the Rochephin i felt SO much better (Monicarenea, I would highly recommend the IV if nothing else is working, i know people who have had lasting success with this). Unfortunately, after 6 mo., I have relapsed. My doc is coming up empty on ideas after 2 months of oral anti-biotic treatment with no success. I am at my wits end right now, suffering from neck and back pain, headaches, fatigue, joint pain, and depression. I am not responding to anti-biotics anymore (which happens from taking them too long, not that we have much of a choice). If anyone has any input, let me know...and i'll keep you posted if I have success. I am in the process of trying to find a good Lyme specialist in my area, Northwest NJ (warren cty.)
One last interesting tidbit from a Newsweek article last week; a woman who suffered from Lyme 11 yrs, went to a Dr. Katz in Orange, CT . She had Lyme 5 yrs before it was diagnosed & 6 yrs of failed antibiotic treatment. This doctor used an experimental regimen of intravenous immunoglobulins (naturally occuring antibodies) to tame her overactive immune system & within a month she felt better. I'll have to run that past the doc.
Sorry this is so long, but as far as I'm concerned, the more info. we share and the better informed we become, the bigger the benefit. Let me know if you have any Q's and Good luck all!
I originally went to my regular doctor (GP) in 2002 with many of the symptoms listed (minus the rash). He finally diagnosed me with Lyme & treated me with doxycycline for 3 weeks (ideally, it should be at least 4-6 weeks). I was re-tested, and told I was fine. I went home & thought nothing more of it.
A year later (after never feeling 100%), I was severe again, and went to a specialist. He got the lab results from my other doc and said the titers had still been high enough that I should have continued the doxy. I still had it all that time! And who's to think the doc we go to for everything wouldn't know what they're talking about? Why wouldn't they refer you to a specialist? But they can't know everything and that's why there are specialists out there for diseases like this. Because of my new doc, I also found out I had Ehrlichiosis & Bartonella. I have talked to more than a few people that experienced the same thing so please seek proper medical attention.
I had been treated with numerous anti-biotics with little success until I got the IV (Rocephin), which I did for 8 weeks. After the Rochephin i felt SO much better (Monicarenea, I would highly recommend the IV if nothing else is working, i know people who have had lasting success with this). Unfortunately, after 6 mo., I have relapsed. My doc is coming up empty on ideas after 2 months of oral anti-biotic treatment with no success. I am at my wits end right now, suffering from neck and back pain, headaches, fatigue, joint pain, and depression. I am not responding to anti-biotics anymore (which happens from taking them too long, not that we have much of a choice). If anyone has any input, let me know...and i'll keep you posted if I have success. I am in the process of trying to find a good Lyme specialist in my area, Northwest NJ (warren cty.)
One last interesting tidbit from a Newsweek article last week; a woman who suffered from Lyme 11 yrs, went to a Dr. Katz in Orange, CT . She had Lyme 5 yrs before it was diagnosed & 6 yrs of failed antibiotic treatment. This doctor used an experimental regimen of intravenous immunoglobulins (naturally occuring antibodies) to tame her overactive immune system & within a month she felt better. I'll have to run that past the doc.
Sorry this is so long, but as far as I'm concerned, the more info. we share and the better informed we become, the bigger the benefit. Let me know if you have any Q's and Good luck all!
LymeConfusion
09-14-2004, 12:34 AM
Ticker, I truly appreciate all of the info you have provided. My hubby became ill in August 2003 (103 degree fever, swollen glands, achy muscles, joint pain). He was hospitalized for a week and tested for everything imaginable. The infectious disease specialist diagnosed him with LD in spite of negative tests and he was given Rocephin via IV for 30 days. He felt better (never 100%) after that but in Spring of this year began experiencing extreme joint pain and fatigue and was diagnosed with FM/CFS. I think he has Post Lyme Syndrome but the specialist we were seeing does not believe in PLS or additional antibiotic treatment. His most recent Western Blot shows 1 band (45) and his Babesia microti IgG test came up as <1.64. The specialist says these test are negative - is that true? Any advice you can provide would be greatly appreciated.
ticker
09-14-2004, 08:10 PM
Hi LymeConfusion, welcome to the board! Thank you for the thank you :)
Thirty days of treatment is not long enough for Lyme even if the infection was caught within two weeks of the bite. Was he given oral antibiotics after the IV? Your husband most likely needs further treatment. Undertreated Lyme can be serious. As far as I know, Lyme knowledgeable doctors do not believe in post Lyme syndrome. If someone still has symptoms, they need further treatment. Most Lyme doctors will treat until a person is symptom free plus at least two months longer.
What are the values on the Babesiosis test? Besides Lyme and Babesiosis, ticks can transmit other infetions--Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Your husband needs to be tested for these also. It is very important to see a knowledgeable doctor. Many doctors follow outdated treatment protocols. Where do you live?
Thirty days of treatment is not long enough for Lyme even if the infection was caught within two weeks of the bite. Was he given oral antibiotics after the IV? Your husband most likely needs further treatment. Undertreated Lyme can be serious. As far as I know, Lyme knowledgeable doctors do not believe in post Lyme syndrome. If someone still has symptoms, they need further treatment. Most Lyme doctors will treat until a person is symptom free plus at least two months longer.
What are the values on the Babesiosis test? Besides Lyme and Babesiosis, ticks can transmit other infetions--Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Your husband needs to be tested for these also. It is very important to see a knowledgeable doctor. Many doctors follow outdated treatment protocols. Where do you live?
JAC1111
10-05-2004, 09:12 PM
Wow Ticker!
This is a very informative thread....thanks for bringing it to our attention!
Do you know how to find out if there is legislation in our respective states to help with the treatment of LD? I can't help feeling as though there's something I should be doing to promote awareness and to help set things right. (I'm just frustrated....as I'm sure everyone is.)
J
This is a very informative thread....thanks for bringing it to our attention!
Do you know how to find out if there is legislation in our respective states to help with the treatment of LD? I can't help feeling as though there's something I should be doing to promote awareness and to help set things right. (I'm just frustrated....as I'm sure everyone is.)
J
ticker
10-07-2004, 10:59 AM
Hi JAC111, thank you for your thank you!
I believe there is quite a bit of Lyme legislation occurring in NY. It is something that needs to be done nationwide.
I believe there is quite a bit of Lyme legislation occurring in NY. It is something that needs to be done nationwide.
luv2read
10-07-2004, 11:46 AM
[QUOTE=smallpackage]Hi guys. I haven't been here for awhile..since then a lot has happened.
I always had little pimples on the sides of my arms, I never knew what they were, thought just a little deformidy from birth. That's also caused by lyme disease...
I don't remember who wrote this, but my son has this.
My second son was born with these little pimples. He is now 9 years old and has them on both arms, both thighs, and both cheeks.
He hates hot weather and sweats so bad (even just rough housing inside). I even had to pick him up from school one day because he was so hot and sweaty from recess.
when he was about 6 , he wanted to play soccer. Well, the first game it was so hot out. He was sweating so bad, his cheeks were all red. He started crying and came out of the game. Will not play a sport to this day!
He also is the one who had a tick on his groin when he was like 2 years old. We were told to just throw the tick away. It was embedded good too.
But as for the little pimple, he was born with those. His cheeks always have tiny pimple and circular redness. It's not on his forhead or nose, but I can notice some on his chin at times (usually when he's overheated and sweating bad).
I always had little pimples on the sides of my arms, I never knew what they were, thought just a little deformidy from birth. That's also caused by lyme disease...
I don't remember who wrote this, but my son has this.
My second son was born with these little pimples. He is now 9 years old and has them on both arms, both thighs, and both cheeks.
He hates hot weather and sweats so bad (even just rough housing inside). I even had to pick him up from school one day because he was so hot and sweaty from recess.
when he was about 6 , he wanted to play soccer. Well, the first game it was so hot out. He was sweating so bad, his cheeks were all red. He started crying and came out of the game. Will not play a sport to this day!
He also is the one who had a tick on his groin when he was like 2 years old. We were told to just throw the tick away. It was embedded good too.
But as for the little pimple, he was born with those. His cheeks always have tiny pimple and circular redness. It's not on his forhead or nose, but I can notice some on his chin at times (usually when he's overheated and sweating bad).
laurie864bla
10-10-2004, 08:59 AM
Look up keratosis polaris. These bumps are unbelievably common and have nothing to do with Lyme. Also, beware of people that tell you absolutely everything is a symptom of Lyme. I am not at all saying you do not have Lyme--but these are just a very common skin condition that is best treated with olive oil--but not even that works well to get rid of it.
braazil
10-24-2004, 11:05 PM
Thank you Laurie for clearing that up- I am sick of Drs saying everything is related to Lyme!!!!!!!!!!!!!!!!!! :D
Coyotecrazy
12-13-2004, 09:14 PM
Hi all. I'm a new member to this site and am ASTOUNDED that so few doctors know anything at all about this disease. I live in central Alabama and most doctors in this state say that Lyme disease doesn't exist in Alabama!!!
Please !!!!!
I've just been diagnosed with Lyme disease after being constantly dizzy and, at times, mentally confused to the point that I'd forget where I was going and didn't recognize what street I was on, even if I'd been on the street many times before.
My primary symptom was the dizziness so I was first referred to an ENT, then a neurologist then a cardiologist then a neuropsychologist and then a psychiatrist. Thank God I finally found an Internist in Birmingham, AL who had a Western Blot test done at IGeneX.
The Lyme IGG came back as:
18kDa +/-
23-25kDa ++
28kDa ++
30kDa ++
31kDa ++++
34kDa +/-
39kDa +/-
41kDa +++
45kDa +/-
58kDa +
66kDa +
93kDa +/-
28
The Lyme IGM came back as:
41kDa +/-
66kDa +/-
Any others that I didn't list, came back as -.
A urine analysis from IGeneX came back as positive too, but I didn't get a copy of that for some reason.
I don't exactly understand what all this means except the internist says that he feels comfortable that all of my, to date, unexplainable symptoms can be explained by Lyme disease.
He's started me out on oral antibiotics (Augmentin, 875 mg twice a day and Zithromycin, 250 mg, once a day) for a month but says that he feels like I'll need to be treated with IV antibiotics if this 1 month trial doesn't show any improvement in my symptoms.
I'd really like to know if everyone who has had Lyme for very long before it was finally diagnosed (I've been "sick" for 2.5 years now and just got diagnosed) has had to go on IV antibiotics. The doc says that I'll probably be on them at least 6 months !!! Is that what you have all found?? Do IV antibiotics make you sick to your stomach or have other bad side effects?
I'm really pretty scared of the thought of IV antibiotics for 6 months and will TRULY APPRECIATE ANY INFO. ANY OF YOU MAY HAVE!!!
Please !!!!!
I've just been diagnosed with Lyme disease after being constantly dizzy and, at times, mentally confused to the point that I'd forget where I was going and didn't recognize what street I was on, even if I'd been on the street many times before.
My primary symptom was the dizziness so I was first referred to an ENT, then a neurologist then a cardiologist then a neuropsychologist and then a psychiatrist. Thank God I finally found an Internist in Birmingham, AL who had a Western Blot test done at IGeneX.
The Lyme IGG came back as:
18kDa +/-
23-25kDa ++
28kDa ++
30kDa ++
31kDa ++++
34kDa +/-
39kDa +/-
41kDa +++
45kDa +/-
58kDa +
66kDa +
93kDa +/-
28
The Lyme IGM came back as:
41kDa +/-
66kDa +/-
Any others that I didn't list, came back as -.
A urine analysis from IGeneX came back as positive too, but I didn't get a copy of that for some reason.
I don't exactly understand what all this means except the internist says that he feels comfortable that all of my, to date, unexplainable symptoms can be explained by Lyme disease.
He's started me out on oral antibiotics (Augmentin, 875 mg twice a day and Zithromycin, 250 mg, once a day) for a month but says that he feels like I'll need to be treated with IV antibiotics if this 1 month trial doesn't show any improvement in my symptoms.
I'd really like to know if everyone who has had Lyme for very long before it was finally diagnosed (I've been "sick" for 2.5 years now and just got diagnosed) has had to go on IV antibiotics. The doc says that I'll probably be on them at least 6 months !!! Is that what you have all found?? Do IV antibiotics make you sick to your stomach or have other bad side effects?
I'm really pretty scared of the thought of IV antibiotics for 6 months and will TRULY APPRECIATE ANY INFO. ANY OF YOU MAY HAVE!!!
laurie864bla
12-13-2004, 09:49 PM
Hi and WELCOME!!!! Man are you positive! WOW! Most of us are not that positive as the disease is weird and loses it's cell wall and binds most of our antibodies up in the disease. Not too many floatin around to catch, in real dummied down terms. There is a lot of great info here and your doc sounds good and Lymne literate, thank God. You will be getting the treatment you need. Main thing is listen when/if they say you need IVs or more orals, or different orals. This disease can be very tough to beat. Most important thing that comes to mind is get good acidophilis and take it at least 1 hr b4 or 2 hrs after your ABX. Otherwise it can interfere with the apsorption of your ABX. Very important when taking ABX especially long term. Otherwise yoou will get bad yeast infections in lots of places--not good. Also keep a diary of your symptoms with a value of 1 to 10 next to them to chart your progress and predict herxes. Keep hydrogen peroxide and epsom salts handy for a hot bath once or twice a day during a herx. Helps my son a lot with the die off/detox. One large bottle and 1 cup of salts ina hot bath. Keep your sugar as low at possible, it's yeastie beastie food. This means refined and your typical high carb stuff. No alcohol either, sorry! I'm sure others will come on with lots of pointers--those are my personal favs-but I am a little spent tonight. Take care and keep visiting. There are great people here. --L
Coyotecrazy
12-13-2004, 09:55 PM
Thanks SO MUCH for the info. I am a bit edgy about all of this (as in scared) but I'm so glad to have a diagnosis. I see that "Ticker" seems to know lots about Lyme and am hoping that he/she will give me some idea of what my test results mean in "dummied down" terms !!! Thanks again !!! I'm so glad I found this board !!!
laurie864bla
12-13-2004, 10:02 PM
Coyotecrazy--
In your spare time, click on Tickers name on a post. Then click on all posts by this user, and you will get a quick education so you know what we all are talkin about, and to get you up to speed. It is rough, I know. I watch my son struggle every day. But the great thing is you are half way there. You got a DX and that is HUGE. You have a LLMD and that is HUGE. You are on ABX and that is huge. take stock in the positive right now. You will be well--and when you are scared, come here. It really helps, I swear. I am speaking from personal experience. --L
In your spare time, click on Tickers name on a post. Then click on all posts by this user, and you will get a quick education so you know what we all are talkin about, and to get you up to speed. It is rough, I know. I watch my son struggle every day. But the great thing is you are half way there. You got a DX and that is HUGE. You have a LLMD and that is HUGE. You are on ABX and that is huge. take stock in the positive right now. You will be well--and when you are scared, come here. It really helps, I swear. I am speaking from personal experience. --L
Coyotecrazy
12-13-2004, 10:07 PM
Thanks again. I haven't really figured out how to use this board, yet, either. I am really glad to have all of the "positives" in my favor now and am just in a hurry to feel better. I think I'd better get over that for a while LOL
Kelly1243
12-18-2004, 08:51 AM
ticker,
This is my first time on here and I read in one of your posts that you know of a good dr. in Jackson,NJ. I am not to far from there and I really need a good LD. Could you please let me know who he or she is? [ removed ] I have been dealing with this for almost 7 years, few different doctors, one being a lyme doctor who treated me for about 2 years or so but I just felt he was very content taking my money every month in exchange for antibiotic script. It's driving me crazy. Doctors trying to diagnois me with MS because I do have spots on my brain and most say spots mean MS! Never had a positive test. Couple bands here and there. If you could direct me in the right direction, as I said, I would really appreciate it.
Thanks so much
Kelly1243
This is my first time on here and I read in one of your posts that you know of a good dr. in Jackson,NJ. I am not to far from there and I really need a good LD. Could you please let me know who he or she is? [ removed ] I have been dealing with this for almost 7 years, few different doctors, one being a lyme doctor who treated me for about 2 years or so but I just felt he was very content taking my money every month in exchange for antibiotic script. It's driving me crazy. Doctors trying to diagnois me with MS because I do have spots on my brain and most say spots mean MS! Never had a positive test. Couple bands here and there. If you could direct me in the right direction, as I said, I would really appreciate it.
Thanks so much
Kelly1243
ticker
12-18-2004, 10:02 AM
Hi Kelly1243, welcome to the board!
I am sorry you have been sick for so long. Were you ever tested for the co-infections that ticks can transmit? Besides Lyme disease, ticks can transmit Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected and it will affect treatment choice and progress. It is important to be tested for these.
Off-board communication is not allowed from this site, but I can give you the doctor's name. Dr. Emilia Eiras is in Jackson, NJ and comes very highly recommended. I hope you can get in to see her soon. Please keep us posted.
I am sorry you have been sick for so long. Were you ever tested for the co-infections that ticks can transmit? Besides Lyme disease, ticks can transmit Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected and it will affect treatment choice and progress. It is important to be tested for these.
Off-board communication is not allowed from this site, but I can give you the doctor's name. Dr. Emilia Eiras is in Jackson, NJ and comes very highly recommended. I hope you can get in to see her soon. Please keep us posted.
pffog
12-18-2004, 12:36 PM
I'm so confused about this Lyme thing... I have been spacey/foggy for 22 years now. I have chronic fatigue, some vision problems, some muscle aches - but mostly that come and go. No rash - and I've definitely been bitten by ticks, many times. I had a western blot done in 2000 - negative... Then in Feb 2004, I had an extremely high positive on a Q-RIBb - positive at the highest dilution. I tested neg on Babesia and Ehrlichia. I know you can have false negative tests, but have you heard of false positives??
I was on doxy for 12 weeks, amoxy for 6 and flagyl on 3 of the 12 weeks... No change in symptoms... so we thought, maybe it wasn't Lyme... now I'm wondering again. I have a very supportive chiro - but was wondering if someone could recommend a Lyme knowledgeable doctor in Pennsylvania/Maryland or Virginia.
I was on doxy for 12 weeks, amoxy for 6 and flagyl on 3 of the 12 weeks... No change in symptoms... so we thought, maybe it wasn't Lyme... now I'm wondering again. I have a very supportive chiro - but was wondering if someone could recommend a Lyme knowledgeable doctor in Pennsylvania/Maryland or Virginia.
horseymom
12-18-2004, 08:42 PM
Hi - I just found this board and am hoping someone can answer a couple of basic questions. I had a tick on my back, discovered Thursday (12/16). I thought it was a scratch, paid no attention, but had been feeling it since the Tuesday before (12/14). My husband put a little mineral oil on it to kill it and pulled it off intact (currently it is residing in the fridge, in case I can get it tested). My horse had erlichiosis about 18 months ago, and I still have the doxy we gave him (he got 10 100-mg caps twice a day, for about a week, and seemed to recover). I called my nurse-practioner yesterday. She said if I took a double dose of the doxy within 72 hours of being bitten that would kill any infection from the tick. Last night I took two caps, and again this am. I feel lousy today, like I'm getting a bad cold mixed in with a little nausea. Of course, many people around me also have colds! Here's my question - was my nurse practioner right? Is it possible to feel sick so soon from an infected tick? The bite was sore and inflamed but not much, and it already looks much better. I have never taken doxy before - could I be feeling sick just from it? Should I continue with the doxy? And last but not least, can I find a lymes expert MD in the Boston MA/Nashua NH area? Thanks!
ticker
12-18-2004, 09:33 PM
Hi horseymom, welcome to the board! I am glad you horse has recovered.
It is good that you saved the tick, it can be tested at IgeneX Lab in Palo Alto, CA. I highly recommend that you have it tested. For future reference, do not put anything on the tick before removing it (no alcohol, Vaseline, fingerrnail polish etc.). Doing so irritates the tick and increases the chance of infection. Use tweezers only by grapsing the mouthparts as close to the skin as possible and pulling straight back.
What dose of Doxy are you taking? A double dose of Doxy is not enough treatment for Lyme. The minimum treatment time for a Lyme infection, caught within two weeks of the bite, is six weeks of the right dose antibiotic. Lyme needs much stronger treatment than many bacterias. Many doctors do not understand Lyme and follow outdated treatment protocols. Undertreated or untreated Lyme disease can be serious.
Many people have flu-like symptoms early in the infection. When you take Doxy, make sure you do not have any dairy products two hours before or after it, or it will not be absorbed properly. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This happened to me and it is very painful. Avoid sun exposure too. You can get a severe burn in minutes even with sunscreen on. Doxy can make you nauseous, so eat something substantial and non-dairy when taking it. Whenever you take any antibiotic, make sure you take acidophilus capsules. They will replace the good bacteria in your body and help to prevent yeast overgrowth. The best kind to get are the refrigerated ones. You can buy them at most health food stores. Wait two hours before or after the Doxy to take the acidophilus also.
There is an excellent Lyme doctor in Ridgefield, CT--Dr. Stephen Phillips. As you know, ticks can transmit more than just Lyme disease. Co-infections include Babesiosis, Ehrlcihiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. I suggest calling his office.
About half of the people who have Lyme get a rash. A bullseye rash is a definite sign of Lyme. If you get a rash, it is important to take photos of it. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you will have evidence of it if needed.
It is good that you saved the tick, it can be tested at IgeneX Lab in Palo Alto, CA. I highly recommend that you have it tested. For future reference, do not put anything on the tick before removing it (no alcohol, Vaseline, fingerrnail polish etc.). Doing so irritates the tick and increases the chance of infection. Use tweezers only by grapsing the mouthparts as close to the skin as possible and pulling straight back.
What dose of Doxy are you taking? A double dose of Doxy is not enough treatment for Lyme. The minimum treatment time for a Lyme infection, caught within two weeks of the bite, is six weeks of the right dose antibiotic. Lyme needs much stronger treatment than many bacterias. Many doctors do not understand Lyme and follow outdated treatment protocols. Undertreated or untreated Lyme disease can be serious.
Many people have flu-like symptoms early in the infection. When you take Doxy, make sure you do not have any dairy products two hours before or after it, or it will not be absorbed properly. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This happened to me and it is very painful. Avoid sun exposure too. You can get a severe burn in minutes even with sunscreen on. Doxy can make you nauseous, so eat something substantial and non-dairy when taking it. Whenever you take any antibiotic, make sure you take acidophilus capsules. They will replace the good bacteria in your body and help to prevent yeast overgrowth. The best kind to get are the refrigerated ones. You can buy them at most health food stores. Wait two hours before or after the Doxy to take the acidophilus also.
There is an excellent Lyme doctor in Ridgefield, CT--Dr. Stephen Phillips. As you know, ticks can transmit more than just Lyme disease. Co-infections include Babesiosis, Ehrlcihiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. I suggest calling his office.
About half of the people who have Lyme get a rash. A bullseye rash is a definite sign of Lyme. If you get a rash, it is important to take photos of it. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you will have evidence of it if needed.
ticker
12-18-2004, 09:40 PM
Hi pffog, welcome to the board!
It is terrible that you have been sick for so long. Many people who have Lyme were first diagnosed with other diseases, including Chronic Fatigue. No Lyme test is completely reliable. I have heard of false negatives but not false positives. The CDC requires a large number of bands to show for the Western Blot to be positive, but most people do not get that many. Many Lyme doctors focus on which bands show--some are specific for Lyme. Results can vary by lab, so it is important that tests be run by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Although a bullseye rash is a definite sign of Lyme, only about 50% of people who have had Lyme ever get a rash. Twelve weeks of treatment is not long enough for someon who has been sick for so long. Lyme and tickborne illnesses need aggressive treatment and it often needs to be long-term. It is normal to feel worse before feeling better. There is no best med for every case, and it can be a trial-and-error process to find the best one for each person.
Dr. Chandra Swami in Hermitage, PA and Dr. Kenneth Singleton in DC both come very highly recommended. I hope you can get an appointment with one soon.
Keep us posted okay?
It is terrible that you have been sick for so long. Many people who have Lyme were first diagnosed with other diseases, including Chronic Fatigue. No Lyme test is completely reliable. I have heard of false negatives but not false positives. The CDC requires a large number of bands to show for the Western Blot to be positive, but most people do not get that many. Many Lyme doctors focus on which bands show--some are specific for Lyme. Results can vary by lab, so it is important that tests be run by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Although a bullseye rash is a definite sign of Lyme, only about 50% of people who have had Lyme ever get a rash. Twelve weeks of treatment is not long enough for someon who has been sick for so long. Lyme and tickborne illnesses need aggressive treatment and it often needs to be long-term. It is normal to feel worse before feeling better. There is no best med for every case, and it can be a trial-and-error process to find the best one for each person.
Dr. Chandra Swami in Hermitage, PA and Dr. Kenneth Singleton in DC both come very highly recommended. I hope you can get an appointment with one soon.
Keep us posted okay?
horseymom
12-18-2004, 09:44 PM
Hi Ticker - thanks for the quick response. I have so far taken 4 caps - 2 last night, 2 this am. That's twice what I was told to do...I was about to take another two and then go to bed but given your info, I think I will wait till am!! I am usually up at 5;30 am...one question, the expiration date on the doxy is 6/03. Is it too old to be good? It does seem to be strong enough to cause some nausea....I do have acidof. caps in the fridge already, thanks for the reminder to take them, and I have been avoiding dairy stuff. Do you really think its possible that I could be feeling sick so quickly?
Kelly1243
12-18-2004, 09:54 PM
Ticker,
Yes I have been tested in the past. The only test that came out highly positive was a luat test. I hear this test is accurate and then that it isn't. All I know is that when I was really sick and on the meds I had the herxs reactions and felt better then worse. I am going to make an appointment with the doctor and see where that leads me. Hopefully in a good direction. Thanks,Kelly
Yes I have been tested in the past. The only test that came out highly positive was a luat test. I hear this test is accurate and then that it isn't. All I know is that when I was really sick and on the meds I had the herxs reactions and felt better then worse. I am going to make an appointment with the doctor and see where that leads me. Hopefully in a good direction. Thanks,Kelly
pffog
12-18-2004, 10:00 PM
Ticker - thanks so much for the info, I'm looking both doctors up right now!
ticker
12-18-2004, 10:24 PM
You are welcome pffog :)
Don't be concerned if the doctors are not listed on-line, many Lyme doctors prefer not to be. Good luck!
Don't be concerned if the doctors are not listed on-line, many Lyme doctors prefer not to be. Good luck!
ticker
12-18-2004, 10:29 PM
Hi horseymom. The Doxy is very expired--it is probably not doing any good. There are dates on them for a reason. The recommended dose of Doxy for Lyme disease is 300-600 mg daily. 200 mg daily is not strong and is what most non-Lyme doctors will prescribe. When taking meds for tickborne illnesses, it is important to take them on a regular basis.
Yes, you can be sick right away from the bite. If you do have a tickborne illness, getting the proper treatment (dose/length of time) early in the infection may reduce the chance of long-term complications. Once the infection becomes chronic, it may be much more difficult to treat.
Yes, you can be sick right away from the bite. If you do have a tickborne illness, getting the proper treatment (dose/length of time) early in the infection may reduce the chance of long-term complications. Once the infection becomes chronic, it may be much more difficult to treat.
ticker
12-18-2004, 10:37 PM
Hi Kelly. I think it is a good idea for you to see the Lyme doctor.
Please keep us posted on your progress, okay?
Please keep us posted on your progress, okay?
horseymom
12-19-2004, 02:42 PM
Ticker...here's an article on expiration dates of rx drugs. This study found that many common rx drugs, including tetracycline, regularly are potent more than 2 years past the expiration date. I believe that doxy is related to tetrac., isn't it? Just fyi. I do plan to call my md tomorrow anyway!
http://www.mercola.com/2000/apr/2/drug_expiration.htm.
http://www.mercola.com/2000/apr/2/drug_expiration.htm.
ticker
12-19-2004, 05:09 PM
horseymom, you could call and ask a phamacist about the Doxy.
See if your doctor might agree to treatment while you are waiting for the tick test results. Make sure it is the proper dose for Lyme. You may want to tell the doctor that your horse had Ehrlichiosis. Many doctors do not realize how prevalent tickborne illnesses are.
Good luck! Keep us posted okay?
See if your doctor might agree to treatment while you are waiting for the tick test results. Make sure it is the proper dose for Lyme. You may want to tell the doctor that your horse had Ehrlichiosis. Many doctors do not realize how prevalent tickborne illnesses are.
Good luck! Keep us posted okay?
ticker
01-13-2005, 07:35 PM
Bringing to the top
horseymom
01-16-2005, 10:09 PM
Hi Tickler, just wanted to check in and say thanks for the support. The test from the lab found the tick negative for both Lyme and erlichiosis. I am very grateful, as the posts I have read here on the impact of these diseases is frightening. I did take 400 mg of doxy for about two weeks, before the results came back, and that made me most uncomfortable. I have learned a very important lesson, which is to check myself and my family daily for deer ticks. Thanks again, and good luck to all :)
ticker
01-24-2005, 09:03 AM
Hi horseymom. I am soooooooooooooo glad the tick tested negative! Do check yourself every day.
Thank you so much for the update!
Thank you so much for the update!
ticker
01-27-2005, 02:44 PM
Bringing to the top
ticker
02-04-2005, 03:47 PM
Bringing to the top
Butch0926
02-06-2005, 06:23 PM
I'm new here. Looking for more information on Lyme Disease. I've been diagnosed with fibromyalgia, but I understand that LD can look like FM. Also, I live in Upstate New York and have hiked on the Finger Lakes trails for years.
My rheumy did an ELISA test on me and it came back negative. Then he told me that he doesn't treat Fibromyalgia patients. So, I'm back to my family doctor. What would my next step be?
My rheumy did an ELISA test on me and it came back negative. Then he told me that he doesn't treat Fibromyalgia patients. So, I'm back to my family doctor. What would my next step be?
ticker
02-06-2005, 07:30 PM
Hi Butch0926, welcome to the board!
You are right, many people who have Lyme were first diagnosed with other illnesses including Fibromyalgia. No test for Lyme is completely reliable. From what I understand, the ELISA is the least reliable and the one most doctors run first.
It is very important to see a Lyme knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs aggressive treatment. Besides Lyme, ticks can transmit other infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab.
I know of three excellent Lyme doctors in NY: in Armonk, Hyde Park, and East Hampton. Would you like one of their names?
Hang in there okay?
You are right, many people who have Lyme were first diagnosed with other illnesses including Fibromyalgia. No test for Lyme is completely reliable. From what I understand, the ELISA is the least reliable and the one most doctors run first.
It is very important to see a Lyme knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs aggressive treatment. Besides Lyme, ticks can transmit other infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab.
I know of three excellent Lyme doctors in NY: in Armonk, Hyde Park, and East Hampton. Would you like one of their names?
Hang in there okay?
Butch0926
02-06-2005, 10:09 PM
Hey Ticker, I see that you're the guru of Lyme Disease on this board. Thanks for the information. I live in upstate New York, so if you know of any doctors in Binghamton, Syracuse, Rochester, etc., I'd be interested. The NYC area is too far away for me to start an ongoing relationship with a doctor.
ticker
02-06-2005, 10:22 PM
Hi Butch0926, I am happy to help :)
Those are the areas I know of where the Lyme doctors are highly recommended. They are some of the best in the country. Unfortunately, there are not many knowledgeable Lyme doctors in the country. Many people have to travel to see one. I believe I have the name of one in Mt. Kisco (not sure of the spelling). Is that closer?
Those are the areas I know of where the Lyme doctors are highly recommended. They are some of the best in the country. Unfortunately, there are not many knowledgeable Lyme doctors in the country. Many people have to travel to see one. I believe I have the name of one in Mt. Kisco (not sure of the spelling). Is that closer?
ohio hunter
02-07-2005, 12:03 AM
hi butch
welcome aboard. i know of two people going to the hyde park dr. not sure of the name but they both like it there.
jon
welcome aboard. i know of two people going to the hyde park dr. not sure of the name but they both like it there.
jon
andoman
02-17-2005, 12:16 AM
Hi Ticker,
I just wanted to verify something you said about a bullseye rash definitely being Lymes. The doctor told me my rash was ringworm, which also is a bullseye rash..
I wish I took a picture of it before it dissapeared.. Should I still get tested to be on the safe side.. I did lose about 10 or 15 pounds in the past few months and have some of the symtoms you mentioned.. I feel like maybe I'm worring to much about it and thats what is causing all of these feelings...
Please advise...
Thank you,
Anthony
I just wanted to verify something you said about a bullseye rash definitely being Lymes. The doctor told me my rash was ringworm, which also is a bullseye rash..
I wish I took a picture of it before it dissapeared.. Should I still get tested to be on the safe side.. I did lose about 10 or 15 pounds in the past few months and have some of the symtoms you mentioned.. I feel like maybe I'm worring to much about it and thats what is causing all of these feelings...
Please advise...
Thank you,
Anthony
ticker
02-17-2005, 11:08 AM
Hi Anthony. People who have a Lyme rash are often told that it is ringworm. I do not know what a ringworm rash looks like or what your rash looked like, but from what I understand, a bullseye rash means Lyme disease.
Since you had the rash and you are having symptoms, you definitely should be evaluated by a Lyme doctor. When Lyme is a possibility, the sooner you begin the proper treatment the better. Undertreated or untreated Lyme disease (and other tickborne infections) can be serious. It is possible your rash may come back. If it does be sure to get photos of it. Place something near it, like a coin or ruler, before photographing it to give it size definition.
You are not worrying to much. Please see a knowledgeable doctor soon so you can find out what is wrong.
Since you had the rash and you are having symptoms, you definitely should be evaluated by a Lyme doctor. When Lyme is a possibility, the sooner you begin the proper treatment the better. Undertreated or untreated Lyme disease (and other tickborne infections) can be serious. It is possible your rash may come back. If it does be sure to get photos of it. Place something near it, like a coin or ruler, before photographing it to give it size definition.
You are not worrying to much. Please see a knowledgeable doctor soon so you can find out what is wrong.
Komondor
02-17-2005, 12:46 PM
Hi Anthony,
I was told about 10 years ago that my rash was ringworm. Funny thing is I would have never went to the doctor over a rash but a nurse at work was concerned because she said it looked like it was from a tick so I made an appointment with my internist.
He said ringworm and he is the doctor... My symptoms started after that little round rash and I now know it was a bulls eye. I saw the exact rash on one of the lyme sites. Mine was rather small just like the photo and on the top of my wrist.
I wish I would have had the internet back then as I would have researched this especially since my horse died of lyme shortly before my rash. Maybe I could have saved my horse, my mom and my three dogs a lot of agony plus one of moms dogs.
I have read about a number of others being told their rash was ringworm and they are now being treated for lyme and other tick borne diseases. My mom actually had a rash too but our internist tested her and said she was fine. That was also a number of years ago and she was just diagnosed a couple of months ago and doing much better.
I do not think you are worrying too much. If you are having symptoms after a rash you should be tested by an LLMD that uses Igenex. You are your own best advocate. The sooner someone is diagnosed the better. Hope you get to an LLMD very soon. If you have lyme... it is nothing to play around with.
I was told about 10 years ago that my rash was ringworm. Funny thing is I would have never went to the doctor over a rash but a nurse at work was concerned because she said it looked like it was from a tick so I made an appointment with my internist.
He said ringworm and he is the doctor... My symptoms started after that little round rash and I now know it was a bulls eye. I saw the exact rash on one of the lyme sites. Mine was rather small just like the photo and on the top of my wrist.
I wish I would have had the internet back then as I would have researched this especially since my horse died of lyme shortly before my rash. Maybe I could have saved my horse, my mom and my three dogs a lot of agony plus one of moms dogs.
I have read about a number of others being told their rash was ringworm and they are now being treated for lyme and other tick borne diseases. My mom actually had a rash too but our internist tested her and said she was fine. That was also a number of years ago and she was just diagnosed a couple of months ago and doing much better.
I do not think you are worrying too much. If you are having symptoms after a rash you should be tested by an LLMD that uses Igenex. You are your own best advocate. The sooner someone is diagnosed the better. Hope you get to an LLMD very soon. If you have lyme... it is nothing to play around with.
andoman
02-18-2005, 05:42 PM
Hi Komondor,
I'm going to see a doctor next week and I will make sure my blood work goes to Igenex. I don't like the way I'm feeling and besides I did lose to much weight. I'm also feeling cold most of the time and my temp. is in the 96 range. Thats telling me something is wrong because I'm usually always warm.
I'm so glad to have found this site through ******. It's great but sad to see that complete strangers seem more concerned than some doctors I have been too.
Thank you for the info.... I really appreciate it and will let you know what happens..
Take care,
Anthony
I'm going to see a doctor next week and I will make sure my blood work goes to Igenex. I don't like the way I'm feeling and besides I did lose to much weight. I'm also feeling cold most of the time and my temp. is in the 96 range. Thats telling me something is wrong because I'm usually always warm.
I'm so glad to have found this site through ******. It's great but sad to see that complete strangers seem more concerned than some doctors I have been too.
Thank you for the info.... I really appreciate it and will let you know what happens..
Take care,
Anthony
Komondor
02-18-2005, 06:38 PM
Hi Anthony,
I think you can call Igenex ahead of time and have them send you a test kit to take with you to your doctor. If you are seeing a regular doc that is and if he is willing which is usually a long shot. I hope you get some answers very soon. I would strongly suggest being tested and treated by an LLMD. Please keep us posted.
I think you can call Igenex ahead of time and have them send you a test kit to take with you to your doctor. If you are seeing a regular doc that is and if he is willing which is usually a long shot. I hope you get some answers very soon. I would strongly suggest being tested and treated by an LLMD. Please keep us posted.
outinthe_woods
02-18-2005, 07:50 PM
Great idea, Komondor, to get a test kit to bring to the doc's from Igenex. Didn't ever think about that!
Komondor
02-23-2005, 07:05 PM
Pay it forward
ticker
02-28-2005, 05:37 PM
Bringing to the top