tremors in hand

I was diagnosed with Lyme Disease last September 5th, soon after that my left foot started with tremors.  Now the tremors have left my foot and are in my left hand.  I took a whole regiman of antibiotics, I took amoxicilian since doxycyclin seemed to make me dizzy, but never had a second blood test to be sure the lyme was gone.  My foot shook until about 2 months ago when my hand started to shake.  I went to our family doctor, had blood work done and it came back positive for lyme.  The neurologist that I was sent to says I have parkinson's disease.  My major question is does a blood test for lyme always come back positive after you've once had lyme disease?? And isn't it rather odd that my tremors all started while I was being treated for an active case of lyme?  I know you cannot possibly give a diagnosis over the internet but just your opinion on the timing involved with the original lyme treatment, the tremors starting would be helpful.  

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Lyme is tested by PCR and Western Blot. It looks at antibodies (IgM and IgG). These would fluctuate depending on acuity of disease.

I cannot comment much on the tremors since I cannot see the tremor. There are several types of tremors including the classic Parkinsons tremor, essential tremor, rubral tremor, cerebellar tremor, and orthostatic tremor. Each has its own presention including when does the tremor occur, when is the tremor not present, what tests need to be done to “bring out” the tremor, etc. I would continue to work with your neurologist to obtain adequate diagnosis. Have you been started on any medications for the tremor? If so, are they helping?

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Jules77733]

I believe the blood test will always be positive for Lyme antibodies once you've had the disease. There is a huge debate on how to treat Lyme disease, however, and some doctors think that patients need to be on antibiotics for 3 weeks, while others believe that patients should be on antibiotics for several months. It's possible that you weren't on antibiotics long enough.

Did your neurologist order an MRI of your head or any other test? Is his Parkinson's diagnosis only based upon the fact that you have tremors? Have any of your relatives ever had Parkinson's?

Lyme disease is well-known for causing neurological symptoms, especially if it isn't caught early. It sure sounds like your tremors are a result of the disease and if so, they may never disappear.

[onemadladyf]

Our neurologist diagnosed this condition purely on visual signs.  My MRI is normal, my blood work only shows positive for lyme, titer test was done which I now know will always show positive after I had lyme last year, but my white blood cell count is up also which would indicate I do have some type of infection in my system.  Life just gets more and more complicated! lol

I have an appointment with our family doctor this morning and will request a Western Blot test be done, I understand that's more likely to give an accurate reading regarding the presence of active lyme disease.  

I had an uncle who had Parkinson's and my brother passed away from complications caused by Progressive Supraneuclear Palsy.  One being somewhat genetic in nature and the other being not.  Not going to give up until I'm really very sure just what is going on with my body.  

Thanks for your imput, I value it highly!

[onemadladyf]

Talked to our family doctor yesterday, he agrees that this could be chronic or neuro lyme.  He ordered a complete set of tests for lyme, we should be able to decide what's what with them.  Seems odd that I have all the symptoms of lyme, I have an elevated white blood count and all my symptoms started way back last September when I was being treated for an active case of lyme.  I'll let you all know what the tests show probably by Friday.  Does anyone know if any test available is accurate for lyme in it's later stages?  We have lost two wonderful dogs in the past 6 months, both had late stage lyme when it was discovered, both received the very best of vet care but both had neurological problems and ended up not being able to walk. Just another bit of information pointing to the thinking that lyme needs to be treated for a much longer period then the 3 weeks of antibiotics now prescribed.  

[Jules77733]

I've heard that the longer you have Lyme, the harder it is to detect it. Given your symptoms, which suggest neurological issues, I would recommend finding a Lyme specialist if you are able. It's good to hear your family doctor is on board, though! Both my mom and brother have had Lyme disease so I know what a pain it can be.

Even if they can't confirm a late-stage Lyme diagnosis, you could ask your GP to put you on antibiotics for an additional month or two and see if you start feeling better (an indication that you do have a nasty bacterial infection like Lyme).

[onemadladyf]

We will get the results of the testing on Monday, I'll be sure to post them here.  I believe putting me on an antibiotic for a few months is the next step no matter what the tests show.  I only wish I had known more about lyme last year when I was diagnosed with it.  They even took fluid from my knee which could have been tested but wasn't except for gout.  There doesn't seem to be any lyme specialists nearby even though this is a high tick area.  We shall see what happens next! lol

[onemadladyf]

I got the test results back today from the hospital, can't talk to my doctor until Monday, and the test results indicate the Western Blot is positive.  So what's my next move I ask.  I was diagnosed with lyme back in September of 2009, spent 4 days in the hospital on iv antibiotics, did a whole 3 week treatment on amoxiciline and here I am, a year later, still with lyme. I have an appointment with my doctor monday and would love to be able to talk intelligently about what course of action we should follow now.  Any suggestions??  Of course I have read many reports online in the past few days about people that have been taking antibiotics for years and still cannot get rid of this dang disease.  I guess after a year I'd be classified as having late stage lyme since it's causing neurological problems, possibly hearing loss, my skin is much oilier, aches and pains traveling from one joint to another. Anyone with simuliar circumstances please let me know what you've tried and is anything seems to work.  

[Jules77733]

Did you have a specific band test done to evaluate if this is an active infection? I mean, it sure seems like it is...but check with your doctor to see if you will always test positive for Lyme or if testing positive actually means you still have the infection. You might need to be on antibiotics for years to control this disease (some doctors have argued treatment for Lyme should require months to years of antibiotics). Have you seen a neurologist to help treat some of your neurological problems?

I might encourage my mom and brother to be tested for Lyme again, as they both had it in the past and still exhibit some symptoms of the disease (fatigue, joint pain, brain fog).

[onemadladyf]

I had the usual titer test done again, my understanding is this test is always going to come back positive once I've had it, and also the lgm and the lgg test.  The lgm showed 1 positive, the lgg showed 6 positive.  So the lgm figures out to be negative but the lgg is positive.  Taken all the results together the overall results were positive.  I was seen by a neurologist who put me on Mirapex.  This drug is helping me some, not with the tremors really but with my joint pain and stiffness in my neck.  I will talk to my GP today and see what type of antibiotic regimen he wants to put me on.  Whatever it takes I need to be rid of this disease.  Please urge your family members that are still showing signs of this disease to get retested.  I'll post what my doctor has to say about all this tomorrow.

[onemadladyf]

Talked to my doctor again today, while he feels all things point to this being a lyme problem, we're going to keep me on the mirapex, which the neurologist prescribed for parkinson's, and do doxycyclin for a month.   Everything that I've read online says it takes month of antibiotics to maybe, MAYBE, get rid of a late stage lyme disease.  

Have you talked to your mom and brother about getting retested for lyme?

Good luck.

[Jules77733]

I'm glad to hear your doctor is being really proactive with your case. A month of doxycyclin may not be enough, but it should be enough for you to observe whether or not you feel an improvement in your overall health, indicating a bacterial infection.

I did talk to my mom about getting retested for Lyme, and she said while she still has some symptoms she's not sure if she still has Lyme...and that she will always test positive for it. I told her to have a more specific test done to look at what bands turn up positive, if any, just in case she has an active infection. She admits it's still possible and I think she's going to ask to be tested at her next physical, but this might not be for a few months. =/ She's so busy and always feels tired but thinks it's because of all the work and stress she deals with, so it's hard convincing her she needs to have her health checked out ASAP. I'll keep reminding her, though...and my brother isn't the type to take matters into his own hands and see a doctor because he's feeling under the weather. When he first contracted Lyme, I was the one who had him taken to the doctor because I noticed part of his face was paralyzed! He knew it too, but he was embarrassed and didn't want to admit to anyone what was wrong, so he tried to hide it (he was about 16 or 17 years old; he's 26 now). His GP actually severely scolded him for not mentioning the Bell's Palsy immediately, because that could've been very dangerous for him.

In short, I'll keep trying. Let me know how you feel on the antibiotics. Your story might be the one to convince my mom and brother to take a trip back to the doctor's office! We have a lot of ticks in Northeast Pennsylvania...and three indoor/outdoor cats that constantly get them and bring them inside. I know I've been bitten several times, but I only test positive for the 41 kD band (generic spirochete).