Not sure if you were aware that Dr. Garth Nicolson was recently a MedHelp guest on the Fibro/CFS Community last week and he has written a review about treating Lyme disease, etc. He comes with very high regard and may be worth taking a look at. Plateletgal (CL of Fibro/CFS) is the person to send a PM to who can put you in touch with his posts and review or there are recent posts on her community, but she can direct you to the ones where he speaks of Lyme Disease!
I think this is important for everyone to read who has lyme disease.... especially the part below about the medication.
I hope this helps !
cindy903 asks “What will it take for Lyme Disease to be taken seriously among
physicians practicing conventional medicine?”
PROF. NICOLSON's RESPONSE: I think that the medical profession has to get away from the politics of Lyme Disease before any real progress can be made. There has been a concerted effort in mainstream medicine to down-play the seriousness of Lyme Disease, especially chronic Lyme Disease. One of the oldest professional societies, the Infectious Disease Society, has done a major disservice to patients with LD by down-playing chronic LD. Basically the traditional ID societies although excellent with acute infections have traditionally left chronic infections to other specialists, such as rheumatologists. This is finally being rectified, but it took a major lawsuit to force the society to recognize some of the approaches used by Lyme physicians and the International Lyme and Associated Diseases Society (ILADS).
My PCP barely prescribed any antibiotics for me when I presented with a classic EM rash. A month later he turned me away when I experienced symptoms of early disseminated Lyme. I now have an unclear prognosis after I switched doctors and my
blood test revealed I have now have acute Lyme disease.
The people who lose the most while the debate is under way are the patients themselves. Turning folks away who still experience symptoms is a direct violation of the sacred Hippocratic oath. ”Do you believe that complications can persist even after the standard 10 days of antibiotics?”
PROF. NICOLSON'S REPLY: I do not believe that 10 days of antibiotic will be sufficient to treat Lyme Disease, even in the initial stages. When it reaches the chronic stages, LD is much more difficult to treat. It is thought by many that this may be due to the many co-infections that exist in LD, the disseminated nature of the disease and the cyclic nature of the Borrelia burgdorferi and its several co-infections (Mycoplasma, Babesia, Borrelia, Ehrlichia, etc.).
Here's the link to the entire Q & A Session with Dr. Nicolson:
P.S. ~ Feel free to PM me. I don't have lyme disease, but I am currently on a treatment that many lyme patients are on. I also have a book on lyme disease on how to beat it... written by Dr. David A. Jernigan. Dr. Jernigan also had lyme disease himself and treated his own condition. He speaks about how you can get infected, treatments and how to control your herxing symptoms.
He is actually the partner of the doctor I was thinking of seeing on my own! It is a small world with really good doctors. My endo thinks I can get in soon and if not, he will call him up (for real this time) and explain my need.
The endo wants me to get better on Lyme treatment so he can tell the neuro, "I told you so!". How many doctors would say that? He said that was just between he and I. When I told the endo that I had gotten over the traumatic visit with the neuro in a few days, he said that was amazing as he thought he himself would still be reeling from it! Do I sound like an anxiety ridden patient if I can let that visit go? I know the endo sees me as a level headed person. It is a good feeling to leave his office feeling that way. This doctor is the best of the best.
He said the Lyme doctor he recommended is newer at Lyme diagnoses, but a genius. He likes the other doctor, but says this one is the best of the two. He trained at Yale and worked at NIH as well.
I am so hopeful, but I know this may be a long haul in getting better. There can be co-infections that the tick may have transmitted that also have to be eliminated with other drugs along with the Lyme bacteria.
That is my update so far. I am just waiting for a call back for the appt with the Lyme doctor.
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