An ever-emerging link between cfs/fibro & glutathione/atp!

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jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 10/27/2008 4:45 PM (GMT -7)   
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 smilewinkgrin  ) 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,
John
 
 
 
 
 
*****************
John (53)
*****************
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!


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/28/2008 4:40 AM (GMT -7)   
John, thank you for posting this information.  I haven't read both links yet but the one I'm working on sounds intereting.  It would be great if this could help everyone.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 10/28/2008 6:16 AM (GMT -7)   
Hi John-

No diabetes, no Lymes, that is good news. And on to another series of injections- and feeling better after just two of them! Yey! I will try to read the links you posted sometime today.

Are you getting back to your normal routine since the hurricane or is that an understatement???

GamJill
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/28/2008 7:55 AM (GMT -7)   
I tried glutathione a few years ago.  Did absolutely nothing to help me.  What is did do was make me sicker.  People with milk protein allergies can't take it. (that's why I got sick).  Also people who have had organ transplants can't take it either.  It's not safe for everyone and should be used with caution.
 
I've heard it's great for cancer patients though....
 
That's my experience with it anyway!  Glad it worked so well for you John.  When we can find things that work for us - it's a victory!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 10/28/2008 8:35 AM (GMT -7)   
Thanks John, I'm going for second visit with rheumy tomorrow and will print out some articles for him to read.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 10/28/2008 11:15 AM (GMT -7)   
John,
Have you ever taken whey protein supplements as a way to increase your glutathione levels and if so, did it work for you?
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 10/28/2008 5:26 PM (GMT -7)   
Hi! Thank all of you wonderful ladies for responding. It's great to be back on here with y'all after being gone so long. To Sherrine......if this info can help just one person feel even a little bit better then I know it was worth putting it out here! To GamJill......yes, thank you dear, it was a great relief finding out that it wasn't something worse. As far as the hurricane, the cleanup and fixup have been moving so well that, at least north of Houston, there are very few signs left of a hurricane, for the most part. South of Houston heading on down to Galveston and the coast, well, it is improving little by little and things are starting to be repaired or rebuilt......it's still going to be a long process for them though! To Ginny......so sorry to hear that the glutathione didn't help you. As you said, with any treatment, it will not work for everyone the same way if at all for some but it is relatively safe (at least that's what a lot of doctors and articles say) when compared with some more radical treatments or massive doses/mixtures of meds. To Marlee......best of thoughts for your rheumy visit tomorrow. The glut/atp treatment is another weapon in our fibro-battle but it seems to keep showing greater and greater promise. To Jeannie.....no, I've never taken or tried those supplements before. Until I got dx'd in June, I'd never even heard of this particular treatment so I was totally in the dark as to what to expect for me.......it is still relatively new and somewhat experimental. My rheumy has made a name for herself from this treatment however......apparently she kinda' pioneered it and the testimonials from her other patients and other doctors using it are roughly 75 - 90% very positive.
 
It seems that the combination of glutathione & atp, together, have a more positive effect on fibro/cfs symptoms than either of them just by themselves. I continued to take the atp orally, on her recommendation, after she stopped the injection regimen and it, by itself, did absolutely nothing for me. I even continued drinking that Monavie stuff and it didn't do anything for me either. I just kept feeling worse and worse and like my health was spiraling out of control. Now, since I haven't tried glutathione by itself or in supplemental form, I can't say for sure whether IT will work without the atp or not.....maybe for some it would, maybe not. This makes that grand statement "No two people are alike" stand out even more prominently. Those glut/atp articles keep talking about an all-important, vital relationship between cell mitochondrial health and your overall physical and mental health and I can literally see puzzle pieces falling into place as I read and can relate. I know this would not be everybody's single reason or defining link between their fibro/cfs symptoms and feeling better but the more I read about the importance of glutathione & atp in everyday life and health, the more sense it makes!
 
Gentlest hugs for all,
John
*****************
John (53)
*****************
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!

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