posted
This is my first post. I'm only six weeks into my Lyme disease journey and already convinced that I need to see a Lyme literate doctor. Please help. Thanks.
Posts: 13 | From MD | Registered: Jul 2010
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I never had the rash but sought treatment for some painless swelling above my ankle accompanied by tingling on one side of my face and discomfort in my neck and back of head. My GP gave me the Western blot, which came back positive for IgM 41 and 23 but negative for IgG. I also had a d-dimer blood test (because I was having chest pain) and that was slightly elevated at .91. Had an ultrasound on my leg a chest CT to rule out blood clots and have been on 200 mg oral Minocycline for 19 days. Can't tell if it's helping or not because the side effects are similar to Lyme symptoms. Have developed persistent tinnitus and numbness in arms. The infectious disease specialist I saw two weeks ago wants to do a spinal tap before putting me on IV antibiotics. I'm not too keen on that idea. I'm in my mid-30's and have BC/BS insurance. Thanks for any suggestions on a LLMD in the Silver Spring, MD or Washington, DC area.
Posts: 13 | From MD | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you be willing to consider lyme doctors who are further away. This is a serious illness. Don't pick your doc based on location close to home. Many people travel out of state for a good lyme doctor.
Many doctors treat lyme disease, but few know enough to cure it. If you are willing to travel to the Baltimore area, I can give you names of 2 docs who know how to get rid of lyme for a person. They got rid of lyme for me and all of my friends.
Also, 99.9% of all infectious disease doctors know NOTHING about lyme disease. They all want us to get spinal taps. I did it because I didn't know any better at the time, just like you. I was just diagnosed.
What a mistake!
Infectious disease doctors are all members of the Infectious Diseases Society of America (IDSA). The IDSA teaches that lyme disease is rare, very rare. And, that it is very easily cured with 30 days of antibiotics. Both of these beliefs are wrong.
I don't know if you know it or not, but lyme disease is in the middle of a major medical controversy (WAR). The IDSA is on one side of the war, and our lyme doctors are on the other side. So, an ID doc is in the "enemy's" camp.
They all want us to get a spinal tap. Since lyme disease is rarely found in spinal fluid, your spinal tap will be negative for lyme disease. Then, most likely, the doctor will say you don't have lyme. That's what happened to me and nearly everyone else on this site.
So, we highly recommend you skip the ID doc and the spinal tap. The ID docs humiliate us, yell at us like we are mental patients because we still believe we are sick, or still believe we have lyme disease.
To get your education on lyme disease, you need to read the Dr. Joseph Burrascano lyme treatment guidelines found here:
Burrascano is the lyme disease guru of the U.S. and the world.
Here is what he says about spinal taps from page 8:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain..."
In addition, I and all my friends got rid of lyme disease with oral antibiotics only. Generally, a good lyme doctor does not need to put a person on IV to get them well.
I had undiagnosed lyme disease for 10 years. Once I got to a good lyme doctor, I got rid of this disease. It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life.
But, the doc is the key to getting rid of this disease. I can't emphasize that enough. You need a doc who has cured at least 3 people of lyme disease. That's how you know the doc knows what he is doing.
Call the lyme support groups in our state (see left side of page, Support Groups) to find out the names of other lyme docs and to find out which ones are getting people well. This is the only way you will get rid of this horrendous disease, not with an ID doc.
Also, a Boston TV station did a great show on lyme disease a little over a year ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
And, let me know if you are willing to travel to the Baltimore area.
Learn all you can about this disease. That will serve you well as you try to find a doc to help you. We will all help you here with any questions you have.
Also, the good lyme doctors don't take health insurance, so expect to pay out of pocket and then submit a claim to your BCBS. That's what I did once I got to the guy who knew enough to cure me.
It costs money to get rid of this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the reply. I'm not planning to limit myself to doctors in my area but figured it was best to let people know where I am in the event that there are some good (or not so good) LD docs in my area. I've been hearing good things about Dr. F and am working on a referral.
Posts: 13 | From MD | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you want to know what I know about Dr. F, send me a private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Kimchi, I sent you a private message.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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