Here is my story in a nutshell. I was diagnoised with FM in 1987 and put on Elavil, of which I could only handle 1/4 tablet. Every other drug they tried put me in the ER. I did well with that until the flu shot of 1993. Two weeks after that I thought what I had was the flu but was still sick a year later. The rheumatologist that diaganoised the FM told me I now had CFS, they were one and the same. The journey of doctor's started, 6 in 2 years. Nothing was working and I read Dr. St. Amand's book. My massage therapist went to a seminar Dr. St. Amand was giving and learned to map. The body is gone over and the lumps and bumps are recorded. I started Guaifenesin and it was rough but was suppose to be as the lumps and bumps slowly leave along with anything else that was there. I know Dr. Cheney used it at one time and called it a detoxicant. Dr. St. Amand's theory is that because of a problem with the renal tubules calcium and phosphate is not excreded and is redeposited. The protocol is very hard since salicylates can block the Guaifenesin from keeping the tubules open. Nothing can be put on the body that contains them. I slowly saw by my body maps that the lumps and bumps were leaving. I went to CA to see Dr. St. Amand for a mapping and was found to be blocking. It took two weeks to find the blocker..castor oil in my hair conditioner. I continued and was feeling better and map almost clear. I was not 100% but close to it. I was on that protocol for 15 years and followed it to the letter. I again started feeling sick after 8 years of doing fine and some people that I knew on the protocol were saying it stopped working after time. It works very well for some that I think now have to be pure FM. Most of these people are also hypoglycemic, some are helped with a low carb diet alone.
Two years ago I knew I was getting sick again and could see that Guiafensin was no longer working and I was not blocked. I was in denial for a year until I crashed big time.
I was lucky enough to get an appointment with Dr. Nancy Klimas last August, she looked at my immune system like no one had ever done. She found that EBV and HHV6 had REACTIVATED, had no idea that was why I was so sick in the 90's. She also found that my killer cells were only working at 5 % and the cytokins were 25% of what they should be. My autonomic nervous system was a mess. Finally I was in the right place, her new clinic in Miami. I had a ton of paperwork to fill out and they knew all about me when I got there. I was amazed, what they remembered, they had done their homework. I had a tilt table test and was found to have POTS. I know now I had it from the start, BP was always goofy, no one got it. I spent a day there, how wonderful they all are..Dr. Klimas. Dr. Daily, Marsha the NP and Hannah, the jack of all trades keeping track of everythng. They all love their jobs and like each other and it showed. YES, in the right place finally!
I am on Imunovir, a low dose beta blocker and electrolyte drink for POTS, I am also staying on the Simplified Program for the methylation block by Rich Van Konynenburg and have another test on that the fall. That will have been two years. It has improved but still some low numbers. I was already taking many the things Dr. Klimas likes...LDN, CoQ10, L Carnitine, vitamin C probiotics and fish oil. I do take extra B complex along with the actified Bs and Mulit-vitamin in Rich's program. I also take Alph lipoic Acid, selenium and zinc. Yes, I am becoming weary of all these supplements but I am starting to feel better. I still have some flu like days as the Imunovior goes to work and puts the bugs back in their places.
Dr. Klimas felt it as too early to test for XMRV, better tests will be coming, too many false negatives and what to do anyway. Aids drugs are too toxic unless a person is dying, I believe her she worked with Aids for a long time.
I have had CFS and FM since that flu shot...that was the trigger. FM did come first though. So for me it is all one big ball of wax. We need a new name!
We need a new name!