Hello, I haven't been on in many years but am currently having many immune-related problems and need some guidance.
Was given 3 doctor's names from ilads.org but two are not accepting new/adult patients and one I cannot reach, he has moved and the # given is not his office anymore!
I am so sick and tired of defending my position that most, if not all, of my symptoms are Lyme related, even after I bring along my new positive Igenex AND Quest results!
Need to find someone who will listen and HELP. Any suggestions would be much appreciated. I am willing to travel from the New Haven area if needed.
Thanks for all you all do, this site was my life-line for a few years back when I was first sick. :)
Posts: 4 | From orange,CT,USA | Registered: Sep 2004
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Frequent Contributor (5K+ posts)
Member # 14183
Sharie, please know that it is NOT a good idea to get doctors names from ILADS. They do NOT know these doctors.
They are just offering a referral service. ANY doctor can sign up to have their name given out. They may have never treated a lyme patient in their life. They may not believe in chronic lyme, etc.
ILADS just sends out the names closest to your location.
So, until others come along to give you names of doctors, try contacting the lyme support groups in your area and nearby areas. See "Support Groups" on the left side of the page.
I know one excellent doctor in Connecticut, Dr. P., but he has a 1 year wait to get in. You can call there and make an appointment anyway. You never know, if someone cancels you could get in right away.
This happened to one person I referred to him. She got an appointment for her son for 2018. Then, 2 hours later, she got a call that the doc had a cancellation and could she make it. So, she got in in a WEEK with this outstanding doctor.
He is expensive and does not take insurance. He is NOT a primary care doctor. He is a lyme specialist. I believe that is what you need and not a primary care doctor.
Also, I have been free of lyme and its coinfections for over 12 years now, but I still test positive for lyme on a Western Blot. This is typical.
The WB tests for antibodies and NOT the lyme germ itself, so as long as antibodies are still circulating in your blood, you will test positive. Many people test positive for the rest of their lives.
So, for someone who has had lyme in the past, none of the lyme tests will work for you. Instead, you need a lyme doctor to evaluate your symptoms and determine if they are pointing to lyme or residual damage from having lyme in the past.
If you got rid of lyme before, you will get rid of it again. But, remember that the doc is the key. Can't emphasize that enough.
Get yourself to the very best lyme doctor you can possibly afford. Pay for expertise. That gives you the best chance of getting well without a lot of wasted time and money.
Posts: 9880 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.