well, i am sick going on 24 yrs. he was my last hope since i had tried almost everything else. so for me, stopping his treatment was not an option; since i was bedridden and in constant agony, the next option was suicide.
i got very sick on the antibiotics, as i expected. due to my being sick so long, he said it would be 4 years before i noticed significant improvement. I noticed it at 3 1/2 years.
i had taken many more dangerous drugs before, including Valcyte, Vistide and AZT (an HIV medication) so the supposed danger of long term antibiotics did not concern me.
If you are concerned about the antibiotics, you can ask for herbal treatments. I could not tolerate the herbals; believe it or not, they were too strong for me. I couldnt tolerate even 1 drop!
I never lived in an area where lyme disease is common, never camped, never was around animals, never bitten by a tick, was a virgin, have nothing like this in my family.
@mattie there is no use pointing out that these treatments are experimental..ALL CFS treatments are experimental. if you can tolerate the illness and want to wait for better treatments (there are some just around the corner), then do so.
KDM's team is still the only one who did genetic sequencing on tissue of CFS patients. He is 10 years ahead in the research. Everything I have heard new researchers say about CFS, he said years ago.
He makes very little money except maybe in Reno for consultations. In Brussels, they have to charge very little. The infusions are done almost at cost. He spends 7 days a week researching this and treating patients. People in his immediate family have the disease. He has to put up with never ending problems from the government who has been trying to shut him down for decades because he treats CFS as a non-psychological disease.
@bostjan01 i also had diarrhea. i took probiotics while on the antibiotics.
a few years ago, he told me rituximab is very dangerous so i don't think he will prescribe it. there are better options on the horizon.
KDM is far from being the only one using antibiotics to treat autoimmune diseases. Google Garth Nicholson, Trevor Marshall, the Wheldon protocol, the Stratton protocol, etc etc
