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Lyme Disease Community
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Saw the Lyme doc!
by kitty9309, Nov 08, 2008 09:58AM
Great news! I have been officially diagnosed (clinically at this point) with Neurologic Lyme. Why is that great news? I have been ill following a bulls eye rash, knee pain and dizziness for 14 years on and off. After reading my history, he looked up and said, "So, you have never been right following the camping trip." My endo recommended this doctor and said he is a genious. I agree. Because I am a microbiologist (and so is the friend that came with me), we were able to discuss this on a fairly high level. I learned even more than i already knew from my research!
He is also suspecting Bartonella and Babesia. I had over 10 vials of blood drawn for the tick testing and CD57.
The next day, I had 15 tubes drawn for other tests, among them many tests for coagulopathies. This doctor specializes in inflammatory vascular disease that can be present with Lyme and it's friends.
I have these white areas of skin all over my body. My endo and I though they were from Vitiligo (autoimmune pigment loss). This doctor say it is not that, but caused by a vascular issue the name of which I can't remember.
Once all my blood work is in, he will see me on Dec. 3 to discuss how to treat. he said that even if the Igenex WB is negative, he will treat with Minocycline for some months to elicit a positive test. He said that patients who are initially negative will invariably become seropositive after being treated long enough.
He will also use Benicar (BP med) to reduce inflammation in the blood vessels at the same time as the antibiotic. He also uses Flagy or the like to break up the cyst form.
His premise is that we all have low-grade underlying infections that are kept in check by our immune system. Then some stressor occurs- Lyme infection, stress, illness, etc- and all these things converge like "the prefect storm".
All of these infections cause vascular changes leading to the development of symptoms in every area of our bodies.
My friend and I joked about opening our own micro lab and doing these tests locally. He looked up and said "Stay in touch." I get the impression that he is eventually looking into that. He is educated at Yale and did research at NIH. How he got out of the usual rat race and started thinking outside the box is beyond me. I will ask him at my next visit how he bucked the system.
So, I was taken seriously. My symptoms are being treated as real and not hypochondria. Nothing was blown off. He even asked how my kids are.(our kids are the same ages) I want to ask about maternal/fetal transmission.
I could say so much more, but you get the idea! Hope is here.
Now I have to believe I can get better after being told there is nothing anyone can do (except maybe a psychiatrist).
He is also suspecting Bartonella and Babesia. I had over 10 vials of blood drawn for the tick testing and CD57.
The next day, I had 15 tubes drawn for other tests, among them many tests for coagulopathies. This doctor specializes in inflammatory vascular disease that can be present with Lyme and it's friends.
I have these white areas of skin all over my body. My endo and I though they were from Vitiligo (autoimmune pigment loss). This doctor say it is not that, but caused by a vascular issue the name of which I can't remember.
Once all my blood work is in, he will see me on Dec. 3 to discuss how to treat. he said that even if the Igenex WB is negative, he will treat with Minocycline for some months to elicit a positive test. He said that patients who are initially negative will invariably become seropositive after being treated long enough.
He will also use Benicar (BP med) to reduce inflammation in the blood vessels at the same time as the antibiotic. He also uses Flagy or the like to break up the cyst form.
His premise is that we all have low-grade underlying infections that are kept in check by our immune system. Then some stressor occurs- Lyme infection, stress, illness, etc- and all these things converge like "the prefect storm".
All of these infections cause vascular changes leading to the development of symptoms in every area of our bodies.
My friend and I joked about opening our own micro lab and doing these tests locally. He looked up and said "Stay in touch." I get the impression that he is eventually looking into that. He is educated at Yale and did research at NIH. How he got out of the usual rat race and started thinking outside the box is beyond me. I will ask him at my next visit how he bucked the system.
So, I was taken seriously. My symptoms are being treated as real and not hypochondria. Nothing was blown off. He even asked how my kids are.(our kids are the same ages) I want to ask about maternal/fetal transmission.
I could say so much more, but you get the idea! Hope is here.
Now I have to believe I can get better after being told there is nothing anyone can do (except maybe a psychiatrist).
Post Comment
Kimberly, VA
I'm glad it went well and you were taken seriously.
I too have just been diagnosed with Lyme.
To early to know just what stage yet.
Mine "might" go back many years... or several years .. or recent.
I have appointments coming up with both
a) LLMD in DC area
b) Johns Hopkins Lyme specialist.
Have read Singleton's book.
I like the technical aspect of your reporting...
Although it is over my head, I can reference it.
Good Luck, keep reporting
Thanks
Who diagnosed your Lyme?
My Lyme doctor is Dr. M in Rockville. His partner is Dr. F.
My brother was treated for Lyme and Babesia by Dr. Singleton.
Thanks for the compliment on my report. I owe much of it to my new doctor. I just re-read it and am embarrassed by my mispellings. ( I probably made a few more just now. lol) We need spell check and a modify post option.
If I may ask, why are you seeing Hopkins and a LLMD? Just to be sure/second opinion?
Good luck at the appointments. When are they?
~Kitty (I am in Howard County)
Dr. S in Towson is MUCH more helpful. He individualizes everyones treatment plan.
I met a guy on another forum who was treated by him who is now well. Was not on minocycline, but another abx. This man also sent his father to him. They are both better now.
I trust my endo who referred me to this doctor. The reason for the Benicar makes sense.
Have you personally seen him?
My brother was treated by Dr. S.
What kind of shady things has he done?