posted
I need to find a good Lyme literate Doctor in Maryland. I have been run through the ringer by inept so-called medical professionals. I paid out Ok of pocket for a lumbar MRI and a spinal specialist who found nothing, but put on Methylprednisolone. I had blood work done at patient first(patient worse)and it was normal for Lyme according to the shockingly incomprehensive two sentence letter they sent. I did not realize that she also tested me for Syphilis, B12 deficiency and thyroid until I got the bill in the mail. I told her my insurance did not take effect until Jan. 1st and I only wanted a Lyme test, including ELISA and Western Blot, $800 worth of tests later and no Western Blot and I'm no better off. Doctors are so arrogant about these type of requests, even if you are self paying, because of their fragile little egos, who are you to tell them what's wrong with you. I even told her I had taken my final dose of steroids that morning, I guess she never learned in medical school that steroids suppress your immune system. It only took me 10 minutes of research on the internet to find out that would cause a false negative. No further investigation even though I live in one of the most endemic areas for Lyme, I'm at the end of my rope, my symptoms are worsening, haven't been able to work for the last month. Help!
Posts: 1 | From Maryland | Registered: Jan 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you the name of a good lyme doctor in Maryland.
Please know that anyone who possibly has lyme disease should not take any steroids or immune suppressing medications if at all possible. It will make your case of lyme disease much worse if you do.
See this quote:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Please study this document to get your education on this disease. For example, do not waste money on an ELISA test. It is junk. See page 7.
A good lyme literate doctor will not even order this test but will go straight to the Western Blot.
You can order a very good Western Blot from Igenex lab in California for $200. Igenex is a tick-borne disease specialty lab. Quest and LabCorp tests for lyme are worthless.
If you want tested through Igenex, which is what I recommend, be sure you go to the lyme doctor on Mon, Tues or Wed so that your blood will be drawn early in the week and shipped to California immediately. Later in the week, the blood could sit in the post office for the weekend causing you to get a false negative test.
Please be sure that you follow these instructions if you want tested by Igenex, the lab Burrascano always recommended. The lyme doc I recommended to you will use a different lab unless you insist on Igenex.
Not only do you need tested for lyme disease, but you also need tested for all of the so-called lyme coinfections. These are babesiosis, bartonella, and ehrlichia. (It is extremely rare that a lyme patient has only lyme disease. It just doesn't happen.)
This can get very expensive. Generally over $600 at Igenex.
You can get in with the doctor I recommend very quickly. But, this is going to cost you some money. You have to pay for lyme expertise.
The first appointment is the most expensive and that is when the testing is done. So, it is a double whammy. No way around it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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So sorry you are going through this. Unfortunately, your experience is common among Lyme patients.
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!
They are far and few between, unfortunately. 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":
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner to see a LLMD by doing this.
Btw - 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. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
So a few years ago a negative Lyme test came up but i got sicker and sicker. I found a doctor who treated me for Lyme 3months. Well i ended up in the hospital, MRIs. Eegs. 4 days in patient. 2 ER visits. Nobody knows what it's going on. I had to drop out of grad school that ju is semester. Its do bad. Only doxy hrlps, but my drs dont believe me and the one that did and treated me just died 2 weeks ago. I need help. My brain and heart are sparking, in pain. Help please. Ill take referral for dc, VA or MD
-------------------- Cmh Posts: 3 | From lexington park, md | Registered: Jan 2015
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posted
thecure - you should write a new post instead of adding on to an existing one. That way, more people will see it and respond. Most don't re-read old posts.
PM sent for VA & MD.
Btw - 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. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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