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09/06/2008 09:08 AM

Lyme disease question

suersh
Posts: 6
Member

Hi,

I was diagnoised for Lyme. I took the oral antibiotics- doxicylcine. It started off with my knee and then elbow and then to my head. Off late i am getting random pain / pinning sensation in my head, my feet and all over body. My MRI came fine, my eeg has some abnormal sizures - very minor. Dr has asked me to take Trileptal which in turn will also help in reducing the neurological sensitivities. I am going to repeat my Lyme IgM and IgGWesternBlot in another 2 months. I started the antibiotic treatment in May based on Lyme IgM and IgGWesternBlot test. Dr asked me to repeat the test once again last month still it was showing postive for Lyme. He asked me to take it once again in another 2 months ( just to ensure it becomes negative). If it is still positive he wants me to go to infection specialist.

My questions are as follows:

Can i wait for another two months or do i need to see the infections specialist at the earliest.

One more neurologist suggested me to take Spine tap. will it help.

Appreciate your feedback. Thanks in advance for your time and consideration. Sue.

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Reply

09/06/2008 11:49 AM
tomro62
tomro62  
Posts: 359
Member

Sue,

Spinal taps show Lyme in only about 7% of cases. Having one done might just be a bunch of pain for nothing.

An infectious disease doctor, if he says you have Lyme, will only give you 4 weeks of antibiotics - then maybe 4 more if you are still sick - but will declare you cured at that point. If your symptoms persist, he will tell you it is Post Lyme Syndrome, and will treat you with pain medications and other adjunctive therapies.

You should see a Lyme specialist, what we refer to as an LLMD. If you need to know some in your area, send me a PM, and I will be glad to look up some names for you.

Be well.

Tom


09/06/2008 01:57 PM
ConnieD
ConnieD  
Posts: 808
Member

Well, what are they planning to test for with the spinal tap? If it's to look for lYme, I, like Tom, would say no thanks. I had a spinal tap, they were looking for meningitis. A spinal tap is an awful thing to go through, especially if they are looking for Lyme(Like Tom said, not likely to show). A much more accurate test would be from Igenex or Immunosciences. Igenex gets the most mention, but my doc used Immunosciences. He also uses Igenex, but has his reasons why he prefers one lab over another.

If you're still having symptoms, you probably still have active disease and need more treatment. You may even have coinfections that weren't addressed. Infectious Disease docs are usually the worst at treating Lyme. Tom is right. Keep reading and researching about this disease and ask lots of questions. There are many knowledgable people on this site. There are options to treatment.

Peace,

Connie


09/06/2008 02:17 PM
suersh
Posts: 6
Member

Thanks Tom for your immediate response. Much appreciated.

I am contemplating on the spinal tap and may not undergo due to the pain associated with it.

I also wanted to know about Trileptal. Will it subside the neurological symptoms.

I live in Herndon/ Northern VA. Can you please point me to some of the LLD's / neuro's/ disease control specialists.

Thanks once again.

Sue


09/06/2008 02:21 PM
suersh
Posts: 6
Member

Thanks Connie for your immediate response. Much appreciated.

Dr wants me to undergo spinal tap to rule out infection in the brain eventhough the MRI came out clean. He is of the opinion the infection would have gone in the blood but may have infected the spinal fluid. I am confused.

I am contemplating on the spinal tap and may not undergo due to the pain associated with it.

I also wanted to know about Trileptal. Will it subside the neurological symptoms. My eeg relieved mulitple spikes on the temporal lobes and no siezures. I suppose the medicine will alieviate the pain but no sure about the long term side effects

Thanks once again.

Sue


09/06/2008 02:46 PM
ConnieD
ConnieD  
Posts: 808
Member

Lyme goes everywhere. The blood tests from Igenex would be much more accurate and a lot less painful if they are looking for Lyme. Plus, now, this is going to sound really silly, but if you are having cognitive difficulties or any other neurological symptoms, I'm guessing it's in your brain....why do a spinal tap??? To confirm?? I don't know. Keep asking lots of questions.

I don't know anything about trileptal. I was given neurontin for my 'nerve' pain back in the day when I was told I had FM. It did nothing, zero, nada, for me. I have no idea if they are similar. I didn't think about side effects back then. I was so desperate for relief. But, I didn't know that I had Lyme, either. Well, now, I am very concerned about the side effects of prescription medication. In fact, I became so sick of taking all those pills and not knowing if I was sick or just had multiple side effects (deep down, I really did know something terrible must be wrong) that I chose the alternative pathway to recover from Lyme.

Maybe someone will come along that has had experience with the drug you are asking about. Keep checkingSmile .

I hope you get the best medical care possible.


09/06/2008 04:55 PM
suersh
Posts: 6
Member

Thanks Connie. I was told by doctor it is for slowing abnormal nerve impulses in the brain.

Sue


09/06/2008 08:29 PM
tomro62
tomro62  
Posts: 359
Member

Yes Sue, that is correct. Trileptal is an anti-seizure medication. It will keep your brain activity level.

I'm not sure why the doc wants you to take it, but I don't think it can harm you in any way.

I will send you a PM with info on doctors.

Tom


09/07/2008 03:30 AM
Julie4848

HI:

My ID doctor put me on 6 months of abx, however I could only last three due to allergies. He started me out 30 days at a time, and would see how I felt. I was not feeling any better so he said I would have to be on them for 6 months, my family doctor and my ID doctor worked together with me. I still see my family doctor every two months for blood work...

Julie


09/07/2008 05:45 AM
suersh
Posts: 6
Member

Thanks Tom.
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