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Old 07-20-2006, 05:49 AM   #1
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Another "could this be Lyme's" thread....

Hi. I was tested for Lyme's on Monday, and am still waiting for the results. The sypmtoms I am having are extreme fatigue, and my hands and feet are hurting. There have been a few times when my hands were swollen, but mostly they are hurting at my wrist bone and also the veins on the top. The viens are poking up, and hurt really bad - a throbbing kind of hurt. Both hands. My feet don't hurt as much lately, but were hurting so bad over the weekend that I couldn't walk. When I went to the doctor, I actually had the head of the tick still in me (was bitten about a month ago), and I went because of the pain in my hands. He didn't suggest that it could be anything else, and started me on antibiotics. What do you guys think? Thanks in advance.

Beth Ann

 
Old 07-20-2006, 12:37 PM   #2
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Re: Another "could this be Lyme's" thread....

Hi Beth Ann, welcome to the board!

I am sorry you have been feeling so bad. Since the head of the tick was still attached, it sounds like it was not removed properly. Improper removal can increase the risk of infection.

Below is a Lyme symptom list. You can have any combination of symptoms.

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

What antibiotic and dose were you given? Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks. It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you post where you are located, we can tell you of the closest Lyme doctos to you that we know of.

Hang in there okay? Good help is avaiable. Your infection is still relatively early which is good. Getting the proper treatment now may reduce the chance of long-term complications.

 
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Old 07-20-2006, 06:19 PM   #3
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Re: Another "could this be Lyme's" thread....

Hi Beth Ann and welcome,

I have pain in my hands and feet and my viens. The doctors thought I was crazy last year when I tryed explaining this to them. The veins on the tops of hands and feet were very prominent. The ones over each side of my ankle bones were prominent and they burned. They tryed telling me they were varicose veins but then I told them they were crazy.

Tickers advice is excellant..as always. It is really good that your doctor started abx right away but you should still find an LLMD to make sure your abx and dosages are correct. Primary doctors don't usually treat for as long as needed either.

Good luck to you and I hope your feeling better soon. By the way, since I started taking my abx all my burning and throbbing in feet and veins has gone away.

Take care...deb

 
Old 07-21-2006, 06:05 AM   #4
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Re: Another "could this be Lyme's" thread....

Hi, Ticker. I am takind Doxycycline 100mg 2X a day, and today my doctor is prescribing a dose pack because my hands are still hurting really bad. Thanks for the advice to document my symptoms. One day the veins hurt and the next day my palms hurt. It's really weird. I've had a few days where I've been feeling sick, so that makes sense what you said about the bacteria dying off. Thanks for letting me in on that. I had no idea. Also, I am in Middle Tennesse (near Nashville), so if you know of any good doctors, please let me know. I spoke with my doctor this morning, and he has gotten back half of the tests - which were all normal. I asked him that if this isn't Lyme's, what else could it be? He said he is really stumped about it, but we'll know more with the other test results. Hopefully will get those later today.

Deb, I'm sorry about your pain, but glad to know your veins were hurting. (That didn't sound right at all, did it?) What I mean is that at least I know I'm not the only one. I feel so crazy sometimes. I always have weird symptoms it seems. Also, glad to know the antibiotics worked. My doc is also prescribing a dose pack for me today. Yesterday, my hands felt like there were HUGE nails stuck in them. I'm ready to feel better.

Thanks, again, to both of you for your help.

 
Old 07-21-2006, 07:55 AM   #5
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Re: Another "could this be Lyme's" thread....

Hi Beth Ann,

I'm sorry to hear about how much your hands are hurting. I'm glad you are getting everything checked out. There could be many things going on, so you definitely want to rule everything out. I do have a question, though. Do you know what kind of test your doctor did for Lyme? The tricky thing is (and you will quickly find this out if you do any reading here on the forum, in articles, research, etc.) that Lyme tests are not necessarily reliable. And it is speculated that the bacteria can hide in the body and all kinds of fun stuff. There are some specialty Lyme Labs with more sensitive testing. IgeneX in CA is one. Your doctor can order a kit and send in your bloodwork. They don't take insurance but will send you paperwork to turn in to your insurance company to see if you can be reimbursed. Maybe that's worth a shot? I also tested negative last summer. I thought that since my doctor tested me that was that. I didn't know this was not a black and white kind of thing. I was sick for a year and did finally test at IgeneX and it was positive. Based on my symptoms, the IgeneX test and now my reaction to the antibiotics I think I am finally figuring this stuff out. At least I hope. And I hope you do, too!

Alexia

 
Old 07-25-2006, 09:08 AM   #6
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Re: Another "could this be Lyme's" thread....

Hi LexiLex,

No, I do not know what type of test that my doctor did. And, I'm still waiting for the test results. They had to put me on a steroid dose pack to help with the pain in my hands, and that has helped a lot. The weird thing is....is that my brother has been having the same stuff going on (I just found out Friday), and his doctor told him his is angioedema. I have know idea what is going on with us, and it's weird that it's surfacing at the same time. I won't get my results back until Monday because my doc is on vacation, but I'll let you know what I find out. I see extensive testing in my future. Oh, and thanks for telling me about that lab. I have a friend whose wife has MS, but here doctors "aren't so sure it's MS". I told him your story, and I think he's going to take his wife for further testing.

Thanks again,
Beth Ann

 
Old 07-25-2006, 12:15 PM   #7
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Re: Another "could this be Lyme's" thread....

Hi Beth Ann. 200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily.

A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Drink a full glass of water when you take it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

People who have Lyme should not take steroids. They can make the symptoms worse. I suggest talking with your doctor about tapering down to get off of them.

I am in TN also, and there are no Lyme knowledgeable doctors here. I recommend seeing Dr. Joseph Jemsek in Huntersville, NC. Maybe your brother should be evaluated also. There is a lot of Lyme disease here but the doctors are ignorant. Definitely do not go to Vanderbilt.

Last edited by ticker; 07-25-2006 at 12:15 PM.

 
Old 07-25-2006, 07:21 PM   #8
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Re: Another "could this be Lyme's" thread....

Beth Ann
Hope you get your results back soon and find out for sure about lyme and the Co-infections.

I see Dr Jemsek in Huntersville NC (Jemsek Clinic) and would highly recommend him.
Prayers....Marsha

 
Old 08-28-2006, 07:36 AM   #9
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Re: Another "could this be Lyme's" thread....

It's been over a month now, and I still don't know anything. Long story short.....most of my tests were negative, and some were never done. Lab threw out my blood. So, my doctor either said he'd redo the tests, or send me to a Rheumatologist. I chose to go to the Rheumy. That was on Aug. 18 and I'm still waiting for test results. They did a ton of blood work on me. Drew about 7 vials of blood. My sister-in-law (who is a nurse) thinks it's my thyroid, because she went through the same thing. I never knew thyroid problems could cause joint pain. Hmmmmmm. Anyway, that could be, because I've been having hormone problems for years. Particularly night sweats since 1997. And I'm 38 now. I don't know, but when I find out what is going on with me, I'll let you guys know. Thanks for all the help and kind words.

Beth Ann

 
Old 08-28-2006, 08:08 AM   #10
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Re: Another "could this be Lyme's" thread....

Hi Beth....if the symptoms started happening around the time of the tick head in you....then would really suggest getting back on antibiotics....I knew I had lyme....but because NONE of my test would come out positive it took YEARSSSSSSS.....to get treatment.....I had a tick head in me too.....yuck!

Lyme also cause hypothyroid! don't think just a low thyroid would cause sweeling and not being able to walk on your feet.....

yes please let us know how you are doing....

Best of Luck!!

 
Old 09-08-2006, 06:10 PM   #11
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Re: Another "could this be Lyme's" thread....

Ugh! I am soooooo frustrated. Went to the Rheumatologist today (who did some testing on me not too long ago). Anyway, he said that NOTHING is wrong with me! Okay, then why am I having all this joint pain and fatigue? He did say that I'm borderline for rheumatoid arthritis, and prescribed some pills. I don't think I'm going to take them, because I don't think that's the problem. Ticker, you're right. There are no doctors here in TN knowledgeable about Lyme's. Can you believe that this dr. told me that there are no Lyme's cases here?!!! Heck, even our poor Governor can't get a proper diagnosis. Oh, and the dr. even went on to say that the swelling in my fingers was from salt intake! I wanted to scream, but I just sat there and didn't say a word. Actually, I wanted to cry. I'm so tired of this. My feet and hands aren't hurting as bad as they were, but they still hurt. And my wrists and ankles are bothering me also. There for about a month, I felt like I had the flu, and that's all over with, but I'm still somewhat fatigued. I would love to go to the Jemsek clinic, but don't know if I'll be able to go (due to work). I wish Governor Bredesen would go there. Ha! Even the Mayo Clinic couldn't diagnose him. Wow. I'm wondering if I do some sort of detox or cleanse if that would help. I've gotta try something. These doctors here sure aren't gonna help me.

Sincerely frustrated,
Beth Ann

 
Old 09-08-2006, 08:30 PM   #12
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Re: Another "could this be Lyme's" thread....

BethAnn
I went to Rhumy for about 10+ yrs. Was diagnosed with FM there. 10 yrs of wasted time and health. I was on steroids several times. Please don't go back. You need to see a LLMD.

I go to Jemsek Clinic. Dr Jemsek has helped me. I'm not well, but better. Try to get off work. Call his office and get an appt. The longer you wait the worse it can get. If it is lyme or something else, he'll be the best one to tell you. All your symptoms sound like lyme. I've had them all too. You probably have alot more you're not even aware of.

I pray you can get to the right dr and get started soon on the proper treatment.

Prayers....Marsha

 
Old 09-09-2006, 04:42 PM   #13
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Re: Another "could this be Lyme's" thread....

Hi Beth Ann.

Sorry you have to be here, but glad you found this place. The folks here are great.

I had many doctors tell me there was nothing wrong with me. For nine months I went through so many tests and bounced from doctor to doctor.

I used to be a dance teacher, and the doctors weren't alarmed that I was walking into walls and sleeping 16 hours a day. Go figure!

I walked into a balance therapy place on my own and I begged for help. The therapist had Lyme and she told me to visit her old LLMD (Lyme Literate Medical Doctor). I did and during my first appointment I actually cried from relief to finally have someone understand!

My LLMD didn't think I was crazy. She did not think my troubles were caused by stress, being overtired, or drinking too much Diet Coke like the other doctors said.

She sent my blood to Igenex for testing and sure enough - positive.

I have been on medicine for over a year and I am finally starting to feel better.

If you don't have your health, Beth Ann, you have nothing. Your health is the most important thing. If you need to, take days off from work. Do some research on your own and don't depend on the doctors to be all-knowing or open-minded.

There are other methods of treating Lyme, Dr. Jernigans protocol, natural methods, etc. Maybe you can research those also?

I can't remember (my memory is still not what it used to be) but what tests did you have and at what lab?

Hang in there. Peace and health to you.

Last edited by 6Blues; 09-09-2006 at 04:43 PM.

 
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