I am currently being treated by a very good LLMD in the new york area, and am improving .
However, I have a number of neurological symptoms that affect my job performance and daily health ranging from frequent headaches to tingling, tinnitus, fatigue, and so on.
I am wondering if it would be worth my while to consult with a neurologist who has lyme experience. I have seen a neurologist who does not, and he did an mri with contrast 15 months ago (negative) and an eeg (I have subclinical seizures) and just did a repeat mri again today (I am waiting on the results). However he was unwilling to advise me regarding how to manage my symptoms, repeat the eeg, or otherwise provide guidance on the neurological side of this illness.
I would appreciate any suggestions about whether I need to follow up on this further, and if so, which neurologists in the nyc area are worth trying.
Thanks!
jen
Posts: 16 | From Pittsburgh | Registered: Jul 2008
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posted
Neuros with no lyme experience are pretty useless and counterproductive.
I sent you the name of a Lyme experienced neuro in CT.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In my experience, the neurological side of the illness goes away with good lyme treatment, as do all the other lyme symptoms. You don't need any special treatment.
But, it does take time. You have to have patience.
The symptoms you named are pretty common. These can be the last to go, especially the fatigue. It does make working difficult. I worked, but it took lots of will power. And, I often took time off--entire days or parts of days.
I hope your lyme doc follows the Burrascano lyme treatment guidelines. I and all my friends and acquaintances have gotten rid of our lyme disease and coinfections by going to docs who follow his protocol.
posted
Yes, I am familiar with the Burrascano guidelines and I am sure that my treatment is causing improvements.
I tend to have "episodes" at unpredictable intervals, lasting a few hours to a few days ... I get cold, my hands tingle, and all the neurological symptoms spike. That's why I was thinking of consulting with a neurologist. Is that typical?
Posts: 16 | From Pittsburgh | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Jen,
off the subject, are you using your real name as your web name here? If so, anytime in the future that anyone googles your name, everything you say here will pop up for their viewing.
Prospective employers will always google job candidates and even insurance companies have been know to do so.
Just wondering - and hoping - that you are using a code name.
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as for your question: I have all the stuff you mentioned, plus some. Never had I had a neurologist who provided even an once of help.
The MRI just done should help rule out anything else of a structural nature.
In the meantime, are you using all the essential supplements that Burrascano recommends?
Liver support can be the single best thing to help lessen neurological symptoms. I'll be back with some links.
posted
Thanks for the warnings, but I am already "out" at work and in my community.
It's a relief to know my presentation isn't too unusual. I am on liver support right now -- a natural supplement. Additional links would be great.
Posts: 16 | From Pittsburgh | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, your symptoms are typical of lyme disease. Look at Burrascano's symptom list on pages 9 and 10.
I doubt a neurologist will do anything for you that your lyme doctor can't do. In fact, I expect a lyme doc to be able to help you more.
Has the lyme doc suggested sublingual B-12 for the neuro symptoms? I'd give that a try.
On p.28 of Burrascano, he says vitamin B is required. It helps clear neuro symptoms. He says to take one 50 mg B-complex daily. If neuropathy is severe, add an additional 50 mg of B-6.
Check his complete list (pages 27-31) to be sure you are taking everything he says is essential. You need more than one supplement. You need a number of them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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