CallieAndToby
Senior Member
- Messages
- 137
- Location
- florida
That may be a blessing in disguise. My friend and I had horrible HORRIBLE experiences with the doctors in Miami.
Have heard rather bad things about peterson from friends who live in tahoe. If you look up his reviews on ratemds - not good.
Dr. Lapp couldn't help me but seems nice.
One friend had good experience with Dr. Chia another had bad experience. She was put on antiviral, didn't help.
I am not ever going to see another "cfs" specialist again. What can they do?? I'm looking into other things, that involve neurologists with knowledge of autoimmunity, specifically neuro-immunology. Not sure how that will go. But the only thing I haven't tried is auto-immune treatment and I've been diagnosed with PANDAS and autoimmune dysautonomia. Lupus has never been ruled out for me......... Auto-immune encephalitis is another thing we are discussing (my psychiatrist and I).
As far as infections go, I'm getting them left and right. I have no voice, so was put on abx, got: UTI, yeast infection, and c-diff (which I currently still have). LDN, immunovir, and equilibrant gave me severe violent reactions and I tried to stick with equil. didn't help. Was put on valtrex for coxsackie, 3 months and I ended up in ER basically got every side effect you can find on google, didn't help titers.............. I wonder what else can they do besides the immunomodulators, very sketchy abx, and antivirals? And when that fails, what then?
I actually heard the CFS doctor in Belgium is the best at ruling out everything else to make sure you actually have CFS. Everyone in the U.S. just assumes you have it when you show up. Ah googled:
Kenny De Meirleir. There is also a doctor in Canada that thinks most CFS patients are misdiagnosed and I can't remember his name either but he runs every test known to man to try and find the actual problem, though sometimes he concludes it is M.E.
Have heard rather bad things about peterson from friends who live in tahoe. If you look up his reviews on ratemds - not good.
Dr. Lapp couldn't help me but seems nice.
One friend had good experience with Dr. Chia another had bad experience. She was put on antiviral, didn't help.
I am not ever going to see another "cfs" specialist again. What can they do?? I'm looking into other things, that involve neurologists with knowledge of autoimmunity, specifically neuro-immunology. Not sure how that will go. But the only thing I haven't tried is auto-immune treatment and I've been diagnosed with PANDAS and autoimmune dysautonomia. Lupus has never been ruled out for me......... Auto-immune encephalitis is another thing we are discussing (my psychiatrist and I).
As far as infections go, I'm getting them left and right. I have no voice, so was put on abx, got: UTI, yeast infection, and c-diff (which I currently still have). LDN, immunovir, and equilibrant gave me severe violent reactions and I tried to stick with equil. didn't help. Was put on valtrex for coxsackie, 3 months and I ended up in ER basically got every side effect you can find on google, didn't help titers.............. I wonder what else can they do besides the immunomodulators, very sketchy abx, and antivirals? And when that fails, what then?
I actually heard the CFS doctor in Belgium is the best at ruling out everything else to make sure you actually have CFS. Everyone in the U.S. just assumes you have it when you show up. Ah googled:
Kenny De Meirleir. There is also a doctor in Canada that thinks most CFS patients are misdiagnosed and I can't remember his name either but he runs every test known to man to try and find the actual problem, though sometimes he concludes it is M.E.
