Hi and thank you for your time and efforts. I have been experiencing chronic Lyme disease for the last three years. I have had Rocephin IV, prolonged doxycycline for several months, and most recently doxy plus flagyl for approx. 6 mos. Each treatment has resulted in months of remission followed by relapses. I wondered if you can recommend an LLMD in the Long Island, NYC or Ct areas that takes insurance(Aetna). I have an infectious disease doctor who has treated me in the past but the protocols have not worked. Thanks, Bill
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for CT.
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!
Stay away from Infectious Disease doctors. They think one dose of antibiotics is enough to treat Lyme and that chronic Lyme doesn't exist.
Read about the controversy regarding Lyme Disease and its treatment:
Btw - please break up your post 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 on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by TF (Member # 14183) on :
I had undiagnosed lyme disease, plus babesiosis and bartonella, for at least 10 years before a doctor figured out that I had lyme disease.
Still, I got rid of this disease once I got to a lyme specialist who followed the Burrascano protocol. The protocol is here:
It is also permanently at the top of Medical Questions on LymeNet.
If you have not already done so, I suggest you read and STUDY this document to get an education on lyme disease and how it should be treated.
I don't know if you know it or not but there is no standard treatment for lyme disease. A lyme specialist is free to do what he wants. So, some use herbs, some give very low doses of antibiotics for very long times (5 or more years, etc.), some follow the "M" protocol or the "L" protocol, some "do their own thing" (whatever they have discovered that seems to help people) and some follow Burrascano.
For that reason, it pays to understand what protocol a lyme doctor believes in before going to him. This way, you know how your lyme will be treated.
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.
To avoid relapses, you must do the weightlifting requirement that you will see near the end of the protocol. It is one continuous hour of weightlifting every other day. You use light weights and do numerous repetitions. You do a full body workout each time.
I credit the weightlifting for keeping me from relapsing for over 10 years now. It strengthens your immune system. Without this, you will relapse any time you stop treatment.
It sounds like you have never been treated for coinfections. That will also cause you to relapse each time you stop meds. You MUST be treated for any that you have. And, Burrascano says that anyone who has had lyme for at least a year will 100% of the time have coinfections.
So, study this document and get a lyme specialist who follows it. That gives you your best chance of getting rid of this horrendous disease.
You can ask lyme support groups about the protocol that a particular doctor uses. Try to get as many patient reports on the doctor as possible to find out how he treats. A true lyme doctor generally has a website all about lyme disease. You may be able to tell from the website how the doctor treats.
Do a LOT of research on any doctor before going. No sense waiting and then being disappointed.
See Support Groups on the left side of the page. Contact lots of them for info on doctors.
An educated lyme patient (one who has studied Burrascano) is able to figure out quickly if the treatment he is receiving is good or not. So, this way you won't waste a lot of time on docs who don't know how to get people well.
I wasted 2 years with such doctors. Then, I studied Burrascano and went to hear him speak. Then, I called support groups and asked for a doc who followed Burrascano. Then, I got well. Then, I sent 5 of my friends to Burrascano type doctors and they also got well. I stick around LymeNet just to help folks learn how to find a good doctor.