posted
i have a short list of medical professionals who might be ll...but i'm 100% sure what to do with it. what kinds of questions do i ask to make sure they know what they are doing? who do i ask to speak to, the office manager or nurse?
Posts: 2 | From the south | Registered: Mar 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Weeding through docs that might be LL is tough. Did you get them from a recommendation from someone who has seen them for Lyme and TBI?
I would contact your local support group or post in "Seeking a Doctor" or both.
The reason for this is I would like to spare you what happened to us! Doctors who are NOT LL will diagnose darn near anything just to say it is NOT Lyme!
My son saw an ID doc who wanted him to get counseling and a pediatrician who said he had 'normal gout.' Another doctor we heard 'has an open mind' said all he needed was to get more exercise... ride his bike, get out and play ball like other kids his age.
My son is very sick... he doesn't feel well enough to do those things. Regular doctors just don't get that. These appointments are always very upsetting for me and for my son.
The doctors tend to talk down to him and not believe what he says about how he feels. Avoid these situations if you can. They are very unpleasant! Not to mention the medical records that follow you everywhere with comments like... denied treatment (when the 'treatment' we denied was steroids for swelling or counseling)
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree. You have to get the names from lyme support groups (see Support Groups on left side of page) or this website or some other lyme support source.
Nothing good is going to happen until you get names this way. Only frustration, humiliation, anger, wasted time, etc. That is what we all had to learn the hard way.
Once you get a list of names from a lyme support source, I recommend this question: Do you follow the Burrascano lyme treatment guidelines?
If they don't, I don't go there. That's because I and all my friends got rid of lyme by going to docs who follow these guidelines. So, I am a Burrascano girl.
You always want to know what lyme treatment protocol the doctor follows. So, at a minimum, you ask what his lyme treatment protocol is.
Talk to whomever knows the answers to these questions. Don't make an appt until you know their lyme treatment philosophy (for example, do they believe lyme is easily cured with 30 to 60 days of doxycycline, or do they believe lyme can be a chronic condition that can take months or years of antibiotics to overcome)
Do they treat with high-dose combinations of antibiotics, or just herbs, or low doses of just one medication, etc.
The various treatment protocols are Burrascano, Liegner, Cowden, Klinghardt, etc. These are named after the doctors who came up with the protocols. Each protocol is based on a philosophy about the disease.
If the doc just does his own thing, I don't think I want to be his patient.
Here are the Burracano Guidelines for your lyme education:
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The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
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