posted
I'm sorry I just realized that I didn't give any details about my situation. I'm an adult who has had Lyme for exactly a year now. (I had the bullseye rash in sept 2015, but I thought it was a spider bite because I wasn't educated on Lyme or tick bites. I'm kicking myself now.)
I've only seen my primary care physician, and she wants to send me to an infectious disease Doctor. After doing some research I have decided against the "traditional" route of doctors for this. Thanks again for any help!
Posts: 3 | From Missouri | Registered: Sep 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome to LymeNet! Good for you for asking for a doctor here! Very wise.
Until others from your area come along, I suggest you contact the support groups in your state or nearby states. See Support Groups on the left side of the page.
Since they are generally led by very sick people, be prepared to wait for a reply.
Ask them who is good in your area. Ask who is getting people well from this horrendous disease. Be willing to travel.
In my over 13 years in the lyme world, this is what I learned: MANY doctors treat lyme disease, but very FEW know enough to get rid of it for a person--VERY FEW. Your job is to find one of those few.
A very good lyme specialist is one who treats only lyme and no other illnesses. This way, he develops expertise in this complex disease. If there is someone like that anywhere near you, try them. And, be prepared to pay. Good lyme docs generally don't take insurance.
Also, educate yourself on what good treatment looks like. This way, you won't waste time and money on a doc who doesn't know what he is doing.
Read the Burrascano Lyme Treatment Guidelines found here:
STUDY this document. Then, compare how any doctor treats you to what it says here.
You are wise to skip the ID doc because they will not treat you long enough. You need to be treated until all of your symptoms are gone, and then 2 months more.
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.
If you are willing to travel, let me know and I can send you the name of a very good lyme doctor who is getting people well. He is located near Washington, d.C. You would only have to travel here once every 3 months. He will do telephone or Skype appointments the other months. (Good lyme docs see/talk with their patients monthly.)
There is no wait to see this doc. Let me know if you want the name, cost, etc. and all the happy patient reports I have on him. You would be in good hands with him. He had lyme himself.
I got rid of my lyme over 11 years ago by going to a Burrascano type doctor. The 2 so-called lyme docs I was referred to before him did NOT follow Burrascano and they both took insurance and had regular medical practices. They were not treating just lyme patients.
So, that is how I learned how to find a good doc. If there is nobody in your state who treats just lyme, or if the wait to see such a doc is long, then you may want to consider the doc near D.C.
You see, lyme docs are few and far between. At least half of all lyme patients go out of state for their lyme treatment and many fly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Yes please send me the info on the DC Doctor! I'm desperate. I have two young kids who need their mom back to normal. Thank you so much!!
Posts: 3 | From Missouri | Registered: Sep 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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
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":
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name. So glad you can travel! I expect you will do well quickly, especially since it sounds like you have only had lyme for one year. That is great if you are correct.
(Often, the more you learn about lyme, the further back you can recognize symptoms. You may not get a bulls eye rash with your first tick bite, but you DO get one with your second. And, that can be when all the symptoms come out also because now your body cannot handle the germ load from both bites.)
Let me know how it goes!
Posts: 9931 | From Maryland | Registered: Dec 2007
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