posted
I was diagnosed with Lyme in May. I have felt bad for almost 5 years, so we believe I have had the disease for that long. My symptoms became worse this year so my GP ran a lot of test and the Western Blot came back positive. I went through a month of extensive antibiotics and felt almost new after that was complete. A couple of weeks later, I started having very odd issues (sharp pains in my right chest/lung and fainting). After a few weeks, I began regressing back to feeling really bad. My GP wants to send me to an infectious disease dr. and I would like to get recommendations from this board on the Dr's in Huntsville, AL who treat Lyme.
-------------------- Trishau Posts: 1 | From Madison, AL | Registered: Sep 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When you go south of Washington, D.C., there are very few lyme doctors and virtually no good ones. I know of none. And, I know of no good ones in Florida anymore.
I suggest that you be willing to travel to the D.C. area. You can get very good care here. Let me know if you want the name of the doc I am currently recommending.
You only have to appear in person once every 3 months. You can do telephone or Skype appointments the other months.
At least half of all lyme patients go out of state for their care and many fly.
If you have been sick for 5 years, you will need at least 1-2 years of treatment if you are the average lyme patient. And, an infectious disease doctor will not treat that long. They have to follow the Infectious Diseases Society of America's guidelines which says that chronic lyme (what you have) does NOT exist. The most an ID doc will give you is 60 days of meds.
We have all learned this, most of us the hard way. 99 percent of the time, an ID doc is the enemy of a chronic lyme patient.
So, I suggest you forget that option and go to a doctor who specializes in lyme disease. That means that his practice is 100% lyme patients or at least 50%. That is how a doctor gains expertise in this complex disease which is really many diseases.
You are wise to ask for such a doctor here. Lyme specialists are few and far between. You are going to have to travel.
And, lyme docs aren't cheap. But, they give you the best chance of regaining your health. The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough. So, go to the very best lyme specialist you can possibly afford.
I also strongly suggest you read and study the Burrascano Lyme Treatment Guidelines found here:
This document will give you an education on the disease. The more you read, the more you will understand the correct treatment for lyme.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
After trying 2 other so-called lyme doctors (they had regular medical practices but also treated lyme) and making little progress in 2 LONG years, I switched to a real lyme doctor (all he treated was lyme; didn't take insurance) and I was symptom free in 8 months and finished with treatment in 13 months.
I had had undiagnosed lyme (and babesiosis and bartonella) for at least 10 years before getting my diagnosis. Still, once I switched to a doctor who followed the Burrascano protocol, I got well.
It is now over 11 years since I was cured of these diseases. I also have at least 5 personal friends who went to Burrascano type doctors at my suggestion and got rid of their lyme.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | 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.
Unfortunately, LLMDs are far and few between. You need to go where they are. None in AL.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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