posted
Seeking LLMD near Calvert County MD. I have been to Johns Hopkins. Have been infected 20+ years, diagnosed 2 years ago. Treated with mountains of doxy, then 30 days of infusions. Doing better but still have significant problems. Thanks in advance.
Posts: 7 | From Port Republic,MD | Registered: Jul 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Tictictock
Your post has me confused?
You went to John Hopkins and they treated you with mountains of Doxy and 30 days of infusions? After you had gone undiagnosised for 20 years?
Sure doesn't sound like John Hopkins.
Due to the high number of complaints from Lyme patients and their families, it is NOT advisable to go to John Hopkins to seek treatment from Tick Borne Infections.
In 2008, then Connecticut Attorney General Richard Blumenthal launched an investigation into the Infectious Diseases Society claiming wide-spread conflicts of interest, including financial interests in drug companies, Lyme testing and patents, insurance companies, ect. A few of the IDSA doctors practice at John Hopkins.
They have actively attacked Lyme patients by denying the existence of chronic Lyme disease.
Would love to hear more of your treatment at their facility.
Be sure to research all LLMD'S. Google for patient reviews. Join your area's Lyme support group to find out what Lyme patients in your area are saying about their LLMD'S. Groups;
posted
I self diagnosed. Went to my regular doctor and insisted on a test. Tested positive for both long-standing and new infection. Was referred to infectious disease specialist.
Posts: 7 | From Port Republic,MD | Registered: Jul 2019
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posted
I self diagnosed. Went to my regular doctor and insisted on a test. Tested positive for both long-standing and new infection. Was referred to infectious disease specialist.
Posts: 7 | From Port Republic,MD | Registered: Jul 2019
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posted
After infusions I felt great for about two weeks. Symptoms began to return. I was then referred to Johns Hopkins where I have only been seen once. Was prescribed minocycline but could not deal with side effect of severe vertigo. Incidentally, I went to 3 or 4 different doctors in the early and mid 2000’s to try to figure out what was wrong with me. They did various tests (except for Lyme tests) and pronounce me perfectly healthy. I continued to pester them for a time as I was suffering mightily. They finally sent me a letter declaring me a hypochondriac and stating that I should seek psychiatric help. I never went back to a doctor after that for more than 10 years.
Posts: 7 | From Port Republic,MD | Registered: Jul 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thanks for replying. I doubt John Hopkins will treat you any further. You need a Lyme Litterate MD.
I sent you a pm. To acess your pm go to 'my profile' under the 'Post New Topic' located in the middle of the home page. It will show all in-coming messages. We don't publically print LLMD'S on open forum to protect them from the politics of these diseases.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I live in MD. I do not have the resources to travel to the west coast to see a doctor. I was hoping that there was someone on your lists in proximity to my home. Otherwise, maybe I’ll go back to Johns Hopkins and see if they can help me.
Posts: 7 | From Port Republic,MD | Registered: Jul 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I sent you Maryland LLMD'S on 7/29.
Posts: 2977 | From Florida | Registered: Nov 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! "It's all in your head!" is a very common "explanation" when they don't know what's wrong with you!
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.
Also 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":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. View "Under Our Skin" and "Under Our Skin2: Emergence". Check your local library or buy them used on online.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the "Edit Post" tab, make your changes, then click "Edit Post" at the bottom. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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