Rheumatic Support

for Antibiotic Therapy

My Story

Jelly/FM/ISAC Syndrome

Anonymous

I started on heparin about 3 years ago and it was truly an amazing experience. I had been very sick with at least 2 mycoplasma infections. My brain fog was tremendous. I was always cold like ice on my hands, feet, nose and even my rear. My skin was blanched white with a purple lace like pattern. My blood was very thick and more brown then red. It was so thick that it was a normal occurance for me to clog the needles when having my blood drawn.

When I was tested using the ISAC panel, I came back positive for T/AT and Soluable Fibrin Monomere. Then I was started on low dose heparin by way of a nasal spray. The results were short of astounding.

Within a day or so, my extremities started warming up and acutally turned pink. I had always felt a heaviness in my arms and legs and that sensation was replaced with a light airy coolness. My body started feeling alive in a way that is hard to explain.

I started having breakouts on my legs. They were strange little infections that seemed to come out of no where. My doctor later explained to me that as the fibrin is desolved, there are no doubt all kinds of things that are released that have been entombed for possibly years. My urine was an odd kind of greenish color which my daughter noticed as well since she was also put on heparin. It is strange because the heparin is clear with no color. That discoloration has long since disappeared.

I may have herxed at some point, but at that time I didn't know what a herx was so I can't comment, because it didn't stand out as that. As time goes on I still see changes in my body, mostly on my skin though. My color is no longer a blanced white, but rather my skin looks alive, hydrated.

About 2 years ago I started on ABX for my mycoplasma infections. I had a herx that was straight out of a bad dream. This was no doubt due to the zillions of pathogens that had been exposed from the heparin. When I started the ABX, my coagulation actually got worse, which we suspect was from the die off. It has since settled down. I had to approach the ABX very slowly as we later found out.

I have been feeling really pretty good, actually pretty great considering what the last 7 months of my life were like. I did get a flu recently that seemed to take some time for recovery, but I think I am starting to get my energy back and am approaching about 95% of what I feel is normal health. I am thrilled with that.

I have just seen my doctor and he ran a few tests. Tested for my hypercoagulation and ran a thyroid panel, since I have just realized that my thyroid is a little swollen. I will be going back on the doxy, but first I need to clear some yeast up, with Diflucan for awhile and I am also going to start an antiviral which I can't remember the name of it.

I am planning to very soon, hopefully when my ISAC stuff comes back use only bromelain and nattokinase to control the fibrin if it is still a problem. Getting control of the mycos is no doubt going to be what eventually normalizes my blood. I have had at least one of my 2 infections for over 23 years. It took me a long time to get this sick, so I know I'm on a long road to recovery. If I can just beat this down into a remission I would be thrilled.

For those of you who may not have seen my picture at PH, I was in very bad shape at one time. Very anorexic thin and grey, but I look pretty darn good for 47 today.

Today I take Elavil and Flexeril for sleep. Norvasc to treat my Raynaud's. I have virtually no pain anymore, I sleep great and I live a very active life. I love to garden, play with my grandaughters, I can go hiking, horseback riding. I still do have to pace myself, cuz there is a limit to my energy. I rarely nap anymore and I often am up till 11:00 PM these days. Overall, I am by far, healthier then I have been since I was in my early 20s. I have a great doctor and I am very pleased with how I am doing now.