It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-05-2004, 02:36 PM   #1
Senior Member
 
Join Date: Jan 2004
Posts: 112
Peeps HB User
Question Missed Lyme diagnosis? Could use your input, please ~ Thanks!

Hi Everyone,

I have just found this board and could use your input on my situation, please.

My hubby and I feel that Lyme is the most likely diagnosis for my symptoms after having done considerable research on the topic.

I was bit by at least one deer tick this spring. I live in Northern MN and we are surrounded by woods and deer; deer are often in our yard. I found a deer tick attached to my thigh. I removed it with a tweezers. It was barely able to be seen, but we have a magnifying lens and we examined it under that and could see it was engorged, so had been on me for awhile. Around the same time, I found another deer tick that was engorged and had either dropped off my cat or myself, on the bed.

I watched for any signs of a rash at the bite site and none developed. It wasn't until months later, when I developed more symptoms, that I mentioned the tick bite to my hubby again and he informed me that one did not have to have the rash to be infected. Since I have multiple health problems, my symptoms could have been related to other causes and we did not make the connection until I brought the tick bite up again a few months’ later.

The symptom when the light bulb went on was when I woke up one morning and could not bend 3 fingers on both hands, but half way. I went from no joint problems to chronic joint problems over night (started a little over 2 months ago). I researched arthritis and found that rheumatoid arthritis acts like this. It can come on slowly or suddenly and usually affects both sides of the body at the same time, like mine did. SO, I suspected RA or Lyme or both. I was having joint problems in most joints, but the hands are the worst - quite bad.

I have read that lyme 'usually' affects the larger joints, such as the knees and not usually the smaller joints of the hands. Then I read that was not true, it can affect the hands too. I imagine there are exceptions to almost anything. My ring finger on one hand is very bad and getting worse. It is at its worst when I wake up in the morning and in the beginning it would get better throughout the day and then start all over the next morning. Now it does not clear up much during the day. My hands are so cumbersome and stiff! The ring finger pops in the joint in the hand, to be able to move it and is quite painful at times, especially after I force it to bend and then open it again. It also gets hot. The fingers on either side of it are getting worse and nearing the same severity. The pinkie on the other hand is the worst, but the next two are affected also.

Unfortunately, I didn't think to write down the date I found the ticks, but I did save them in separate baggies and labeled where they were found. My hubby and I think it was in April or early May that I removed the tick from my right thigh. I didn't know if the ticks might be able to be tested, but then as I read about the disease, it sounded like that might not be too useful, as it can only tell you if the tick carries the bacteria, but of course, not if you contracted it. It also sounded like the tick needed to still be living or preserved a specific way, in order to test for the bacteria? SO, I assume having the ticks at this point is not too useful?

As I said, the arthritis was the last symptom I developed, so I will back track a bit. Sometime after being bit, I came down with very increased fatigue and pain (I have had a diagnosis of Fibromyalgia for 13 years, which also causes these symptoms). However, at the same time, I had been diagnosed with hypothyroidism (which also has these same symptoms -and it turns out I had hypothyroidism/Hashimoto's for at least 10 years, but untreated) and had just started on thyroid medication for that, so we wondered if the severely increased fatigue and all over pain might have been a side effect of the thyroid med, while my body adjusted to it - but it seems unlikely, in retrospect - we were still not thinking 'tick' at that time, at all.

While that was going on, the lymph glands on one side of my neck became very enlarged, along with an area right above my jaw (all on the right side of my body, tick was also on my right side). I was getting very sharp ear pain, but once the swelling went down a bit, the ear pain vanished. I then developed upper abdominal swelling (really severe). I could barely eat tiny bits of food as even that would cause so much discomfort and cause me to swell up even more. I began an exercise program of walking and it exacerbated it even more. The more I walked and the less I ate, the bigger I was getting!

At that point (late May), I made an appt with an internist and he had no explanation for any of it. I did not mention the tick, as I had not suspected it at that time. He did a bunch of lab work and it came back with elevated liver tests (about 2-3 times the norm). Again, he had no explanation.

WELL, then the arthritis symptoms hit the beginning of July. I also have a bad rash on the same thigh I was bit, but not at the bite site. This rash has been a problem off and on for years though, but it usually just flares for a bit and then clears up. After the tick bite it kept getting worse and spread to an area about 10x12 inches, when it used to be just a small area. I don't know if this is related? I had eczema as a child and it may be that. I read one report (only one) that said lyme may exacerbate eczema and psoriasis - any one know if that is true?

I went back to the doctor a few weeks ago and told him of the arthritis symptoms and the rash. He never bothered to look at the rash. It is very itchy - can the rash from a deer tick be itchy? I have only read anything in regard to that mentioned in one document that stated it does not itch. He said in light of my liver tests we needed to do certain liver tests again and a hep C test. He also mentioned lyme, before I even got to telling him about the tick bite. He also mentioned testing Rheumatoid Factor and ANA. At that appt, I then mentioned I had been bit by a tick after he brought up doing a lyme test. That was all I/we said about it at the time.

WELL, everything came back negative, except for my liver tests which are still elevated, but only slightly at this time. It wasn't until after I saw the doc this last time, that I began researching about the lyme test and discovered that it is common to get false negatives. From everything I have read on Lyme and rheumatoid, they both say the diagnosis should be made on clinical findings and not on a serum test alone - that the test should only be used to 'support' the clinical findings and one should be treated if the symptoms point to lyme.

The doctor sent out a letter with my results and just pointed out that everything was negative and he had no explanation at the present time for my symptoms. The only action he mentioned was the recommendation to do liver tests again in 2-3 months.

I would love any feedback you might have. I don't know what my next step will be. I am thinking it should be to return to this doctor and point out the timeline of symptoms after the bite and see what he thinks. I am disappointed that with all of my symptoms, he did not have anything to say about the possibility of a false negative test(s). I would much prefer to seek out a rheumatologist, but need a referral from my primary care clinic (this doc or another from there, so figure I will need to see him at least once more and see how that goes first).

Following are my Lyme test results:

Lyme AB Western Blot Reflex
Lyme AB/Total Immunoglobulins 0.30 (range says less than .90 is negative)
Lyme Ab Interp, EIA - Negative
Lyme Disease Ab, Quant, IgM - 0.11 (range says less than .90 is negative)
Lyme Ab IgM Interp., EIA - Negative

Then it has the following comment: IgM levels may peak at 3-6 weeks post infection, then gradually decline. (this test was done anywhere from 3-4 months after the bite)

I also have read in one document that a 'normal' person will not have any antibodies for Lyme - IF this is true, then what do I make of the fact that on the two tests done, they did find some antibodies, but below what they determine to be positive for lyme? Does the test pick up non-specific antibodies that may not be lyme related? [as a side note, if it has any relevance - I do have antibodies for Hashimoto's thyroid disease and have several autoimmune diseases]. I have read the many explanations for false negative tests and can surely see one of them being a possibility.

Sorry this got to be so long! Thanks so much for 'listening.' I appreciate any input you may have.

Best Wishes!

 
Sponsors Lightbulb
   
Old 09-05-2004, 03:30 PM   #2
Senior Member
(female)
 
Join Date: Aug 2004
Posts: 145
moecasey HB User
Re: Missed Lyme diagnosis? Could use your input, please ~ Thanks!

Peeps - Hi
Your hands sound quite similar to my mom. She has pain in her right hand more so than the left. The pain seems to travel from the fingers. Some days in some of them and then switches to other fingers. Her right hand the other day was actually HOT. The left felt normal. So I would assume that yes Lyme does attack the smaller joints too. She is currently on Doxy at 200mg but within the next 2 weeks after she is on it for about 40 days her LLMD is going to up it to 400mg a day. She has pains that seem to migrate and her temp drops along with her blood pressure which leaves her dizzy, nausea and quite fatigued. She has ok days and bad days. I wish everyone to be completely cured from this Lyme disease. It is horrible to hear so many people suffering. Good luck to you and I wish you well.

 
Old 09-05-2004, 06:28 PM   #3
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 5,818
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Missed Lyme diagnosis? Could use your input, please ~ Thanks!

Hi Peeps, welcome to the board

Lyme disease can cause many different symptoms and affects people individually. Only about 50% of people who have Lyme ever get a rash. Although a bullseye rash is a definite sign of Lyme disease, rashes can vary. They can also occur anywhere, not just at the bite site. It is a good idea to get a photo of your rash. Before photographing, place something near the rash like a coin or ruler to give it size defintion. That way you have evidence of it. Many people who have Lyme were first diagnosed with other illnesses, including Fibromyalgia.

It is good that you saved the ticks, they can be tested at IgeneX Lab in Palo Alto, CA. I believe they do not want the tick to be alive (who could blame them?!). They can test both ticks together for the price of one.

Elevated liver enzymes happens to many people who have Lyme. You are right, no test is completely reliable. Still, it is very important to use a Lyme reputable lab, such as IgeneX, for testing. Besides Lyme, ticks can transmit several co-infections--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected. Swollen glands can be one symptom of
Bartonella.

It is extremely important to see a knowledgeable doctor. Many doctors do not understand Lyme and follow outdated protocols. Where do you live?

 
Old 09-05-2004, 10:32 PM   #4
Senior Member
 
Join Date: Jan 2004
Posts: 112
Peeps HB User
Thanks Ticker

Quote:
Originally Posted by ticker
Hi Peeps, welcome to the board

Lyme disease can cause many different symptoms and affects people individually. Only about 50% of people who have Lyme ever get a rash. Although a bullseye rash is a definite sign of Lyme disease, rashes can vary. They can also occur anywhere, not just at the bite site. It is a good idea to get a photo of your rash. Before photographing, place something near the rash like a coin or ruler to give it size defintion. That way you have evidence of it. Many people who have Lyme were first diagnosed with other illnesses, including Fibromyalgia.

It is good that you saved the ticks, they can be tested at IgeneX Lab in Palo Alto, CA. I believe they do not want the tick to be alive (who could blame them?!). They can test both ticks together for the price of one.

Elevated liver enzymes happens to many people who have Lyme. You are right, no test is completely reliable. Still, it is very important to use a Lyme reputable lab, such as IgeneX, for testing. Besides Lyme, ticks can transmit several co-infections--Babesiosis, Bartonella, Ehrlichiosis (HME & HGE), and Mycoplasma. It is important to be tested for these because many people who have Lyme are co-infected. Swollen glands can be one symptom of
Bartonella.

It is extremely important to see a knowledgeable doctor. Many doctors do not understand Lyme and follow outdated protocols. Where do you live?
Hi Ticker,

Thanks for your reply and for the welcome.

I live in MN. I see that you responded to someone else that you did not know of a doctor in this state. Do you know of any websites or other sources to locate a suitable doctor to diagnose and treat Lyme? I will post a message with that heading also.

Thank you for the info about the elevated liver tests in regard to Lyme and the info on swollen glands and Bartonella.

I was reading another thread where the IgeneX lab was discussed. This is good to know! My labs were done by LabCorp and only reported a Total #, no bands. Also, in regard to the IgM test, the lab states that it may peak at 3-6 weaks post infection and then may gradually decline. This test was run at least 3-4 months after I was bitten by the deer tick. I have been reading excerpts from Karen Vanderhoof-Forschner's book (online - until I get a copy), and her book states the same.

Thank you also for the info on testing the ticks through the IgeneX lab.

I also took a photo of the rash tonight. I don't believe it is going anywhere (the rash on my thigh, not at bite site - didn't have one there), as it has been around for months now and only getting worse. The doc (that never bothered to look at it) prescribed Elidel. I had asked him if I could get something for the skin behind my ears that had gotten so bad with splitting open. He never looked at that either. I guess it must be one cream fits all kind of thinking, have no reason to look at the problem.......! When he told me he was going to prescribe Elidel (I knew it was one used for eczema) for the ear area, I told him I had a bad rash on my leg too and hopefully it would help that - so much for getting that looked at. I have used the cream on both and it has helped. BUT, I was not comfortable with the fact that he never looked at the one on my thigh, in case it was relevant to the tick bite for some reason, so I have stopped using the cream on it, until SOMEONE looks at it! However, it is driving me nuts with the itching and getting much larger and worse. SO, I took the photos, in case I can't put up with it before seeing a doc and have to go back to the cream, making it more difficult to diagnose after using it. I was also reading in the book excerpts (mentioned above): [Lyme disease]"...damage potentially includes chronic or relapsing problems of the SKIN, joints, muscles, eyes, heart, and neurological system. Less often, some combination of liver, lung, bladder, spleen and gastrointestinal ailments is also present. By the time these more severe symptoms appear, the disease can be securely lodged in the body, difficult to diagnose, and much harder to treat. Later, symptoms also imitate other illnesses and can easily be misdiagnosed." The skin referrence peaked my interest in regard to my problems.

Thanks again for your reply and your help. I appreciate it! I hope this finds you doing okay?! Best Wishes!

 
Old 09-05-2004, 11:09 PM   #5
Senior Member
 
Join Date: Jan 2004
Posts: 112
Peeps HB User
Thanks moecasey

Quote:
Originally Posted by moecasey
Peeps - Hi
Your hands sound quite similar to my mom. She has pain in her right hand more so than the left. The pain seems to travel from the fingers. Some days in some of them and then switches to other fingers. Her right hand the other day was actually HOT. The left felt normal. So I would assume that yes Lyme does attack the smaller joints too. She is currently on Doxy at 200mg but within the next 2 weeks after she is on it for about 40 days her LLMD is going to up it to 400mg a day. She has pains that seem to migrate and her temp drops along with her blood pressure which leaves her dizzy, nausea and quite fatigued. She has ok days and bad days. I wish everyone to be completely cured from this Lyme disease. It is horrible to hear so many people suffering. Good luck to you and I wish you well.
Hi Moecasey,

Thanks so much for your reply and sharing about your mom's situation and the similarities with her hands. Thanks also for sharing about her treatment. I am sorry to hear that your mom is suffering from Lyme disease with multiple symptoms.

I was just wondering if your mom has been tested for thyroid disease? Hypothyroidism can also cause the symptoms you listed: low temp, low BP, dizzy, fatigued. So many diseases and syndromes overlap! Thyroid disease is another that often goes undiagnosed and undertreated. It is like Lyme in the respect that one really needs to do their own research about the testing for the disease and having it appropriately diagnosed and treated. Unfortunately, it is a situation where you can't just leave it to the doc telling you, "your thyroid is fine." One needs to see the lab results and get the correct interpretation of the findings and also get the right tests done (which is usually NOT the case).

Best Wishes to your mom and you, as you try to help her with this disease. Thanks for the well wishes!

 
Old 09-06-2004, 11:34 AM   #6
Inactive
 
Join Date: Jan 2004
Location: Charlotte Hall, MD
Posts: 357
Komondor HB User
Re: Missed Lyme diagnosis? Could use your input, please ~ Thanks!

Hi Peeps,
My mom and I both have problems with our hands/fingers. Mine was so bad I could not even squeeze a windex bottle. Sometimes my fingers lock up too. This symptoms as well as the others will get better with proper treatment.

My mom hands started feeling better just after starting treatment. She was so excited about being able to open a jar... Lyme can also cause Hypothyroidism. I hope you get some answers soon and are on your way to better health real soon.

Moecasey,
Hope your mom is feeling better very soon. It is great you are doing so much research.

 
Old 09-06-2004, 01:47 PM   #7
Senior Member
 
Join Date: Jan 2004
Posts: 112
Peeps HB User
Thanks Komondor! Some Questions for you...

Quote:
Originally Posted by Komondor
Hi Peeps,
My mom and I both have problems with our hands/fingers. Mine was so bad I could not even squeeze a windex bottle. Sometimes my fingers lock up too. This symptoms as well as the others will get better with proper treatment.

My mom hands started feeling better just after starting treatment. She was so excited about being able to open a jar... Lyme can also cause Hypothyroidism. I hope you get some answers soon and are on your way to better health real soon.

Moecasey,
Hope your mom is feeling better very soon. It is great you are doing so much research.
Hi Komondor,

Thanks so much for your reply! The info you shared on your mom's hands improving, is very encouraging. Thank you for letting me know you both have this symptom and that it is related to lyme. I have lost function in my hands too, with the degree of stiffness and inflammation. Everything I do is cumbersome now, even washing them. My hubby has to open jar lids that don't come off really easy and I have to use silverware to pop open ketchup and dressing bottles, that sort of thing. Washing my hair and using a washcloth is cumbersome. This morning I was awakened when I had a jerking reflex in my sleep and it caused my fingers to try to close - the pain that movement caused, woke me up.

My finger that is the worst, locks too. Are your fingers the worst when you wake up? Mine are. They used to get better as the day wore on, but lately that is not even happening much.

Would you mind sharing what med(s) your mom is on and the dose? Are either of you taking any medication to specificially treat the inflammation and joint symptoms while waiting/hoping the antibiobics may clear it up?

Interesting - I wasn't aware of a hypothyroidism and lyme connection - only that they can have some of the same symptoms in common. With me, the deer tick that I removed came after the thyroid problems.

However, I have had symptoms (and the diagnosis, whether correct or not?) of fibromyalgia for 13 years and my thyroid tests show I was hypo when they started doing them around 10 years ago (my unknowing doctors did not treat), but I also have lived 18 years in a rural area, in Northern Minnesota, with a significant deer tick population - deer are often in our yard and we have been finding the ticks for years. We live in the country, not in the town, surrounded by woods and deer. BUT, the only deer tick I am 'aware' of having bit me, is the one I removed from my leg this spring. It is always possible that I have had a missed diagnosis/wrong diagnosis that dates back before this episode, but I have never had the arthritis problems before, which is the symptom that really set me on a search for more info about lyme and the possibility of having it at this time, after knowing I was bit by a deer tick that was on my body for awhile, since it was engorged. The elevated liver tests are also 'new' along with the upper abdominal problems.

Thanks for the well wishes. I am currently trying to locate a LLMD, to see about a diagnosis. I need to return to the internist that ran the tests first and see what he might have to say when I describe my timeline of symptoms with the idea of Lyme as the culprit. I would not feel confident in him treating me though, even if he does change his mind about the diagnosis, since he so easily seemed to write off the diagnosis based on the tests he ran, not leaving room for false negatives, it appears. It sounds like treatment needs to be in the hands of a LLMD, as well as a diagnosis. I certainly don't want to undergo lyme treatment if it is the wrong diagnosis - but I am highly suspicious of it at this point.

Very Best Wishes to you and your mom! I hope to read that you are both steadily improving.

 
Old 09-07-2004, 11:51 AM   #8
Inactive
 
Join Date: Jan 2004
Location: Charlotte Hall, MD
Posts: 357
Komondor HB User
Re: Missed Lyme diagnosis? Could use your input, please ~ Thanks!

Hey Peeps,
I also get those jerk reflexes in my arms and legs. So many things happened to me before things got real bad... and I did not pay much attention as I thought it was normal. I was not very in touch with my body back then. I used to ask my mom about these weird things, sensations or weird pains. She would tell me she has it – “it must be normal”. NOT. I knew she had to be infected too when I figured things out many years later... I had symptoms for years (fatigue was the worst) but they were not debilitating. I was still a very active person until 2001.

Many people are diagnosed with fibro. My doctor was one and went many years with this diagnosis. He finally figured out he has lyme because he kept getting lyme patients in his office. This was years ago. Anyway, a light bulb went off in his head (just like many of us) and he thought "gee I wonder if I have lyme". He did, was treated and never relapsed. He feels wonderful. It is very possible you were bit prior and never saw the little sucker. Have you read Dr. Joseph Burrascano's guidelines?

I was just reading something the other day which I have always thought and this is basically what it said. Why are some people sicker than others? Why is it easily cured in some? One aspect is certainly the host's environment (i.e. weakened immunity). However, another possibility is something referred to as "germ load". This means that the body tolerated it first infection OK, with no signs of illness. BUT, then the person is bitten again and because of this germ load which becomes too much to battle, the person becomes very sick.

There was a study done in horses on this. They didn't get sick the first time they infected them, but six months later they infected them again, and boy did they get sick. Many people can have lyme for years with no symptoms. My husband swore he was in perfect health... The only reason he agreed to testing was because I nagged him. One thing that can happen to females is they get sicker around the time of their monthly cycle. Not everyone experiences this but I did/do.

Please do not get discouraged if your internist looks at you like you are a nut case. I have been there and done that. Mine swore that my symptoms were too wide spread for me to possibly have lyme. I knew in my heart/gut I was infected... and the more I read the more convincing it became especially when you read others stories. You know even the nerve problem/pain in my foot that they wanted to operate on is now gone. I never would have thought that was lyme related nor my constant jaw pain (the tooth pain came much later). Lyme is multi-systematic and can cause many things. Every person does not have the exact same symptoms…

Find a good LLMD, make an appointment and keep educating yourself. There is a wealth of info out there. Oh, my mom takes ceftin and biaxin and I think they are 500mg each. No we do not take anti inflammatory meds. I really do not have much swelling anymore. I used to think gout every time my feet swelled and lyme can cause gout. I hope you are feeling better very soon and please keep us posted.
Stacey

Last edited by Komondor; 09-07-2004 at 11:57 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Could This Be Lyme? Help! ShellBell14 Lyme Disease 6 12-16-2009 07:26 AM
lyme vickyl Lyme Disease 6 06-20-2008 04:00 AM
AS diagnosis and Lyme sanns29 Lyme Disease 12 01-12-2006 06:51 PM
anyone uncertain about lyme dx? just told by another dr chronic lyme is overdiagnosed sickandconfused Lyme Disease 16 09-12-2005 02:47 PM
How do you differentiate CFS/FM from Lyme? sickandconfused Lyme Disease 10 08-29-2005 07:14 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



jojo (69), jenj770 (45), tess201 (29), ticker (14), Administrator (11), 6Blues (9), annalisa9397 (7), lala52 (5), dganz (5), Katherine777 (5)

Site Wide Totals

teteri66 (1165), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 06:59 PM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!