This is topic Desperately seeking LLMD in IL and FL in forum Seeking a Doctor at LymeNet Flash.


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Posted by Reba331 (Member # 45154) on :
 
I would also love to hear your reviews of any wellness centers, integrative centers and specialists that you have seen before.
I want to know what helped, what didn't and what you wish you did differently.
I am seeking LLMD's in IL and FL but am willing to travel just about anywhere that will give me a better chance at feeling well (or better) again!!

Request#2- reviews for Dr K in Orlando and Dr M in Sarasota, FL too.

Thank you in advance!!
 
Posted by TF (Member # 14183) on :
 
After having lyme disease (babesiosis and bartonella also) undiagnosed for at least 10 years, I found out that I had lyme disease and began to go to lyme specialists.

I wasted 2 years with doctors who did not know enough to cure me. I began studying the Burrascano lyme treatment guidelines and went to hear Dr. Burrascano speak at a lyme meeting.

I decided that he knew a whole lot more about lyme than either of my lyme doctors. So, I called around to my local lyme support groups asking for a doctor who followed the Burrasacano protocol.

I hit the jackpot with my third lyme doctor. He followed the Burrascano Lyme Treatment Guidelines found here:

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

(These Guidelines are also posted at the top of Medical Questions.)

He got me symptom free in 8 months and finished with treatment in 13 months. That was nearly 10 years ago now and I am still cured of lyme disease! Praise God!

Then, I sent at least 5 of my friends to lyme doctors who followed Burrascano and they also got rid of their disease.

So, this has made me a believer in the Burrascano protocol. Dr. Burrascano was the original lyme disease pioneer, and when he was practicing they came from all over the globe to be treated by him. He was the most successful lyme doctor on the planet.

So, I only recommend doctors who follow Burrascano. I tell everyone to read and STUDY the Guidelines and then go out and find a lyme doctor who follows them.

This is the most important thing a lyme patient can do--educate himself. The document is not an easy read because it was written to doctors to teach them about lyme and its treatment. But, it will give you your education on the disease that you have.

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 strictly herbs, some give very low doses of antibiotics for very long times (5 or more years, etc.), some follow the Dr. M protocol or the Dr. 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 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. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned and put it on the Internet so that other docs could benefit from it.

There was one doctor in Florida who followed Burrascano, but he retired this summer. So now there is nobody that I recommend in Florida. Florida is a terrible place to try to get lyme treatment.

I suggest you go to Support Groups on the left side of this page and contact all of the ones near you. Ask as many as possible for the names of the good doctors in your area.

Many lyme patients have to go out of state for good care. There just aren't that many good lyme doctors. So, be prepared to travel.

I can give you the name of a doctor I recommend in the D.C. area. He can see you quickly. He will also do telephone or Skype appointments after you have seen him in person. That saves you from traveling to the D.C. area monthly.

Let me know if you want the name and all the info I have on him. Send me a private message. To do that, click on the envelope icon above my post.
 
Posted by TF (Member # 14183) on :
 
You may also be interested in reading my post "What makes a lyme doc top notch." It is here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115161?#000000

And, the LymeNet moderators also preserved it at the top of Medical Questions under the topic "Important Information on Lyme and Cos"

I suggest you do a lot of reading there also.

The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough. You want the best lyme doctor you can possibly afford.
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet! PM sent for MD.

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!

They are far and few between, unfortunately. You need to go where they are.

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":

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/15615?#000005

When you call for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in earlier by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/group/StatenameLyme/info

Maybe they can help.

Some more resources for you:
www.lyme-aware.org

Dr. H, the top LLMD, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Check the local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com
 


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