Retro virus in gut

March 27, 2011 at 2:51 am

Hi everyone,
I can relate to this because for the last few months, my stomach has been feeling really odd. I am bloated to the point that I look pregnant, and it is a hollow, feeling that 1 word can describe, YUK! I can’t even zip my pants! I thought it was bloat g due to gas for a while because it lasted so long that I lived on gas x for weeks without improvement. I went to a new specialist, Dr. Nancy Klimas, the medical director for the Chronic Fatigue and Fibromyalgia Center in Miami because on top of CIDP, I also have those 2 conditions, and then some:-/:eek: She ran a battery of blood test and I tested positive for coxsackie B2 AB, a virus that attacks the gut!!!
The way I contracted it was from my daughter who caught slapped cheek syndrome, a.k.a parvo 5. It is a virus that went around in Nov-Dec, 2010 in the school system here in Miami. Little did I know that even though I didn’t display the flu like symptoms she had, I caught it in my gut:( My immune system is so compromised that I didn’t and still don’t have the defenses to battle it! So here I am, top button undone, uncomfortable a hell waiting for this virus to die! And since it is viral, there are no meds to attack it.
She ran some more tests on me that showed that I am not only fighting that virus off, without any defense in my blood, but 3 additional viruses to boot! Mono, HHV6(measles) and shingles!!! I tested positive for nearly all Ebstein-Barr viruses!!! Good Lord!!! No wonder I am so exhausted all the time!! She clarified that I have less than 5% of my NK cells (natural killers) in my blood, which is what would kill these viruses for me. What a mess!!!!!!!!!
Anyways, I’m blabbing and off track. Here is what I really want to pass on to you. There have been a few very promising studies showing the existence of a retro virus called XMRV. It has been found consistently in patients who have diseases like ours that almost always leave us suffering from Chronic Fatigue Syndrome. It was discovered about 6 months ago and there are more papers backing it than debunking it. Besides, there are always skeptics! Read about it. I’m not saying that it will cure your bad gut, but if the studies keep finding this in patients with compromised immune systems, she is guessing that a study will be made of it within 6 months. The good news is that there will finally some physiological backing to our dx. Some hard evidence, therefore, some much needed money from the NHI, FDA, government or whomever the hell is supposed to watching out for our health. I think she said it can be confirmed with a endoscopy/biopsy of the stomach lining. That is where the virus lives and where it can be found. Talk to your doctor about it. It was very interesting and I for one, would like to get to the bottom of this bloated belly of mine. I just had a round of IVIG and am hoping that will supply me with the antibodies I need to kill this coxsackie B2 AB so I can finally zip my pants. If not, I am getting the test to see if I have the XMRV virus and take it from there.
BTW: for anyone interested in the blood work done to find out that my immune system is working on overdrive, but not targeting sick cells due to lack of NK cells in my blood and also a test that proved beyond a shadow of a doubt that I have Chronic Inflammatory disease due to high TFNa, the blood test performed was:
Cytokine Multiplex-18 Report.
If you have a good relationship with your doctor, ask if he/she can run this test for you and then take it to an immunologist for translation. I paid $850 for the consult that lead me to that test, which answered a lot of questions and let me and my neuro know that I am not exaggerating about my fatigue. It’s not depression, it’s part of the CIDP that has caused these immune disorders that are keeping me in bed with Chronic Fatigue. Save your money ($850), get the test and for those of you having a hard time convincing your doctors, give them the results and shut them up once and for all!!! There is no denying medical evidence, no matter how naive. My neuro said “Wow! This is starting to make sense”.
Really doc?????
Be well.