posted
Hi all, I have been recently diagnosed with Lyme and possibly CIRS. Would love to hear others stories about how they found the right practitioner and treatment plan. Thanks!
Anna
Posts: 1 | From 08027 | Registered: Sep 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Contact as many lyme support groups near you as possible. See Support Groups on the left side of the page.
Ask them who is getting people well in your area. Tell them you want someone who follows the Burrascano Guidelines.
Study the Guidelines so that you are educated about these diseases and what good lyme treatment looks like. The Guidelines are here:
There is no substitute for an educated patient when it comes to lyme. Compare your treatment to what it says in the Guidelines. We will help you to do it if you need help.
I wasted 2 years on a lousy treatment plan. That's why I stick around LymeNet. I got rid of lyme and babesiosis and bartonella over 12 1/2 years ago. I am still symptom-free, enjoying my life.
I stay here to point folks to the good doctors and to the Burrascano protocol. I got well when I went to a doc who followed Burrascano. Then, I sent at least 5 of my friends to docs who followed Burrscano. They all got well also.
The Burrascano protocol is the most successful protocol on the planet. Burrascano was the lyme disease pioneer. He was the #1 lyme doc when he was practicing. They came from every country in the world to be treated by him.
I don't know what area of the country you are in, so I can't say how far you might have to travel to get a good doc. Many states have none. Many people go out of state for treatment and many have to fly.
Generally, lyme specialists do not take insurance. A lyme specialist is a doctor whose practice in 100% lyme disease or nearly so. It takes about 10 years of experience treating lyme for a doc to be able to handle most cases of lyme. So, ask folks how many years the doc has been a lyme specialist when you are asking around.
Be willing to travel to get good treatment. The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
So, learn how to pick a good doctor. There is a real learning curve here. You can also ask in "Seeking a Doctor" forum for names of good ones in your area.
Take advantage of the experience of those on this board. If you are on the east coast, you can write to me privately and I will tell you who the top docs are.
Just click on the envelope icon above my post to write privately.
Welcome to LymeNet, Anna! We will help you here all we can.
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 only 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. See p. 14-16 for the antibiotics that treat lyme disease.
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 (or other well-known "reference laboratory") for most of these tests--they are a tick-borne disease specialty lab in Calif. (Quest and LabCorp are not "reference laboratories.")
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 required exercise is 1 continuous hour of weightlifting every OTHER day. This restores the immune system to normal.
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 and published what he learned so that other docs could benefit from it.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I asked around for experiences, studied, and personally saw several of the LLMDs at the top of my list so that I could make a well-informed decision.
I saw 6 different LLMDs in 4 states.
I ended up choosing Dr. C in MO. He is an excellent doctor. We drive from TX to see him. Some of the other docs I saw were good also, but Dr. C was the best fit for me. I'm extremely happy with my decision.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic