posted
I'm in north TX looking for a dr. I am not diagnosed with Lyme but feel like I have something pathogenic going on - affecting my eyes (scleritis), joints and feeling bad quite often. Drs say autoimmune, but I think it's pathogenic and they won't dig deeper. Everything started after a whole bunch of vaccines and travel overseas.
Thank you
Posts: 1 | From Arlington, Tx | Registered: Jan 2016
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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.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Tracie, good for you for thinking of lyme disease. Before your lyme specialist appointment, it would be great if you could educate yourself somewhat on this disease.
This way, you will understand more of what the doctor is talking about and what he wants you to do and why.
The best document you can read is the Burrascano Lyme Treatment Guidelines found here:
Go to pages 9-10 and look over the list of lyme symptoms. Make a VERY complete list of all of your symptoms by referring to this list. Take this list to your lyme appointment. This is very important because doctors often have to make a tentative diagnosis of lyme based on symptoms and past history. You don't want to rely on your memory when you are with the doctor. So, spend a lot of time on this.
Then, go to the section on Babesiosis and the section on Bartonella (these are common lyme disease coinfections that nearly every lyme patient has). See if you have any of the symptoms listed there. Pages 26-27 are a good summary of the symptoms of each.
The more you can study the Burrascano Guidelines, the better prepared you will be to investigate this very complex disease. As you will find out, lyme doctors are few and far between and they can be expensive. They are free to treat lyme any way they want to treat it. I suggest you try to find a lyme specialist who follows the Burrascano protocol. It is a high-dose combination of antibiotics protocol.
Here are some points from the Burrascano 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 specialty 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.
The exercise recommended is weightlifting for one continuous hour every OTHER day. This boosts the immune system. Aerobic exercise is not permitted.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
The patient should not take steroids of any kind (prednisone, etc.) unless required to treat a life-threatening situation.
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.
So, to summarize, there are 4 prongs to the protocol:
antibiotics diet supplements exercise (weightlifting for 1 continuous hour every other day)
All 4 prongs are required for the patient to return to health.
This document is not easy to read because it was written to teach other doctors how to treat lyme. However, it will give you a good education on the disease you may have.
Lyme is difficult to diagnose. See page 7 for the discussion on how it should be diagnosed. Even if you get a negative result on a lyme blood test, you can still have lyme disease. So, if you have lots of lyme symptoms, do not stop your search for a lyme doctor based on a negative lyme test.
Texas does not have many lyme specialists. Many lyme patients in Texas come to Maryland for diagnosis and treatment. We have a good lyme doctor here who can generally see you in a few weeks.
So, if you find yourself faced with a long wait in Texas, you may want to consider flying to Maryland for help. Let me know if you want the doctor's name and I will send it to you including price info and lots of patient reports on him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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