posted
I live in Rochester, NY and have been treated with one month of doxycycline twice a day for Lyme. I tested positive again for Lyme post treatment however my Rheumatologist doesn't want to further any treatment. I am still symptomatic and seeking a provider more educated on Lyme as my symptoms are becoming more neurologic in nature. Thanks!
Posts: 1 | From Rochester, NY | Registered: Apr 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good for you for finding LymeNet and asking for a doctor here.
You definitely need to see a lyme specialist. The best ones treat only lyme disease patients and nothing else. This causes them to develop a lot of expertise in this complex disease (which is really a number of diseases).
This gives you the best chance of stopping the lyme from progressing and achieving a symptom-free state (a cure or remission as it is called).
So, be willing to travel to get good care. The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough.
I sent you some names.
You also would do well to educate yourself on lyme disease. There is no substitute for an educated patient when it comes to lyme. This way, you will be able to evaluate the doctor's treatment of you and know if you are getting good or lousy care.
So, read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Burrascano was the most successful lyme doctor on the planet when he was practicing. People came from all over the world to be his patient.
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.
Welcome to LymeNet! We will help you all we can.
p.s. You will likely test positive for lyme for many years even once you get rid of it. Go by symptoms to know if you are rid of lyme or not. And, a good lyme specialist will treat you for as long as it takes to become symptom free. That is what you want to do. Then, treat a little longer to be sure it is gone. That is what Burrascano recommends, and that is what my doc did for me and it worked!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Welcome to Lymenet! PM sent for upstate NY.
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.
Read the books written by Dr. H, the top LLMD, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
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