Hello to all my fibro-family! I sure have missed y'all! I've been away from the forum for a while awaiting a highly-anticipated rheumy visit and subsequent results.
This may be a little long but please bare with me as this may offer some of you some future relief for symptoms and some possible answers to some of your questions about your symptoms. As many of you know, I was officially dx'd with fibro/cfs/cebv in June of this year (after many years of symptoms and an "unofficial" dx by my current pcp) and started a regimen of glutathione/atp shots over 2 consecutive six-week periods. During that time, I felt the best I had felt in many years and what's even better is that others noticed as well. On my rheumy visit in late August, she discontinued the shots for a trial period to gauge my body's response. Needless to say, my response was horrible at best......I completely degraded back to my pre-rheumy visit days and developed a couple of extra strange and unpleasant symptoms as well. Y'all may remember me mentioning continuously smelling a sickly-sweet acetone-like aroma as well as a substantial worsening of all my other symptoms. I even got some comments from y'all about the smell mentioning the possibility of diabetes, ketoacidosis and a couple other serious illnesses and the need to get this checked out asap. I was feeling so bad that I managed to move up the rheumy visit to last Tuesday from October 31st.
Well, to make a long story short, she took more gallons (at least it felt like ) of blood for more tests including diabetes, ketoacidosis and another Lyme disease panel as well as a urine sample. The results showed that I have an elevated white blood-cell count in my urine and well as a low blood ATP count of 19 (30 is apparently the "magic number" they shoot for). I apparently have some sort of infection somewhere in my body that I'm now taking an antibiotic for. It turns out the acetone-like smell or, really, any kind of very unusual smell can be as easily produced by an infection as it can by something more serious like diabetes. The results showed no sign of diabetes, Lyme or any other more serious disease. To say I felt a huge relief would be an understatement.
Now, the part that may be of interest to and, hopefully, some help to some of you. She started me back on the glut/atp injections, twice a week now for eight weeks, and, after only two injections, I already feel substantially better. I honestly don't think it is a placebo effect or psychosomatic.....I feel REAL relief and can, hopefully, look forward to feeling better and better like I did before. There seems to be ever-increasing proof of a link to glutathione/atp deficiency and cfs/fibro and you can definitely count me as a believer on that one! This may not be a fix-all treatment avenue for everybody but I believe it is well worth at least asking your doctor about it. Glut/atp deficency is mentioned as a probable trigger point for cfs/fibro, multiple sclerosis and others in the same family. Here are 2 links that state their remarkable relationships and importance they play to your daily life.
What I found even more interesting.......I came across this article today from another person who seems to mimic the results I got before on my first regimen and am now starting to see again. The book this person mentions ("Living Well With Chronic Fatigue Syndrome and Fibromyalgia") also includes the name of my rheumy in it as one of the self-proclaimed cfs/fibro experts and pioneers so I believe there is some real validity to this glut/atp link to our shared illnesses. http://www.revolutionhealth.com/stories/stories/show/94f53a6e52d24338af0bb55254857acc
I truly hope that this can be of some help to someone else as it has been for me.
Gentlest of hugs everyone,
Dx'd June 2008 with Fibro, CFS and CEBV (Chronic Epstein-Barr Virus) after many years of ongoing and worsening symptoms......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types). Several meds too numerous to mention!