posted
While traveling to Yellowstone with family got debilitating case of Lyme disease diagnosed in Minnesota on return trip. Want to see specialist at home. Any advice? I live in Eastern Pittsburgh region.
Posts: 2 | From Pittsburgh, pa | Registered: Jun 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!
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":
posted
i am looking for a LLMD in Pittsburgh as well--any help would be great--also...anyone been diagnosed with MS but its really Lymes?
Posts: 1 | From Pittsburgh, PA | Registered: Jun 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Many, many people have been misdiagnosed with MS and many other diseases when it is really Lyme. I was misdiagnosed with all sorts of stuff over ten years.
That being said, there is some research that shows that Lyme can spur MS.
Sometimes MS really is MS.
In my opinion and experiences, it is *imperative* you get seen by a qualified LLMD. A really good LLMD can find out if one has Lyme, ms, Lyme and ms, or something different.
A good LLMD will look at all the pieces and rule out what is NOT going on and try to find out what IS going on.
Hopingandpraying recommended essential literature in this thread to become more educated: "Cure Unknown," and "Why Can't I Get Better." The movie, "Under Our Skin" gives a quicker overview of the big picture. The books provide a deeper level of understanding.
Welcome to Lymenet--you found a wonderful support group.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you some names and info. Many lyme doctors believe that eventually the medical community will realize that MS is lyme disease. The physical findings of both diseases are identical.
And, when you consider that MS has no cure, you might as well consider your MS as lyme and get lyme treatment. At least there are ways to kill lyme and many get cured of it. That will not happen for anyone who gets treated for MS. Their best hope is to get their MS into remission.
I have known people who were diagnosed with MS (but it is always a tentative diagnosis--there is no test to diagnose MS) and they were "cured" of their "MS" by taking antibiotics! Wow! That's how we cure lyme.
I also knew a man diagnosed with Lou Gehrig's disease who went to a lyme specialist at my recommendation. He tested positive for lyme and his Lou Gehrig's disease symptoms went away with lyme treatment.
And, then there is the doctor in the west who was diagnosed with Alzheimer's disease who came to Pa. and was treated for lyme and got rid of his Alzheimer's.
So, perhaps you see a pattern here. Any illness whose cause has not yet been discovered can often be cured with antibiotics because the cause of these illnesses is an as yet undiscovered infection.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You should write a separate post instead of adding on to an existing one, because most don't re-read old posts. That way, more people will see it and respond.
PM sent for OH.
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
travelmom, please read this regarding lyme misdiagnosed as MS:
"Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP).
The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques. Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination.
In Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986).
Dr. L. has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD.
The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy."
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