fibro / cfs caused by a virus???

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GSDgirl
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Date Joined Mar 2010
Total Posts : 1286
   Posted 8/23/2010 6:22 PM (GMT -7)   
pretty interesting article and especially the comments
 
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 

TheChickenPrincess
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Date Joined Jun 2010
Total Posts : 554
   Posted 8/23/2010 7:11 PM (GMT -7)   
I have read about this theory before. Will be sure to read the link you noted later, thank you. It sounds very plausible to me.
I read about it here where she was tracking the studies, their successes and their failures:
www.fms-help.com/XMRV.htm
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

TheChickenPrincess
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Date Joined Jun 2010
Total Posts : 554
   Posted 8/23/2010 7:30 PM (GMT -7)   
Oh - one more link about this all
aboutmecfs.org/Rsrch/XMRVBuzz.aspx
Dang - when I turn it into a hot link, it ruins the address. If the above is broken for you when you click just cut and paste this address instead.
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

Post Edited (TheChickenPrincess) : 8/23/2010 10:20:53 PM (GMT-6)


GSDgirl
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Date Joined Mar 2010
Total Posts : 1286
   Posted 8/23/2010 7:38 PM (GMT -7)   
Thanks Chickie, this is the first time I have heard of this theory.
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 

TheChickenPrincess
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Date Joined Jun 2010
Total Posts : 554
   Posted 8/23/2010 10:38 PM (GMT -7)   
Hey, I'm extra glad you posted this tonight, GSDgirl. There was a major update in the research just yesterday, Monday. It is on that second link I posted above. I'm going to take it along to my first rheumy appointment tomorrow.

These are a few intriguing bits from that second link I made:

"Kitei reported that Dr. Alter believes his findings confirm the original XMRV findings stating "Viruses tend not to be homogenous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” Dr. Alter should certainly know - his work on hepatitis viruses that lead to the discovery of two new viruses garnered him the 'Nobel Prize' of Medicine - the Lasker Award. Dr. Alter found no less than four <different types of heretofore undiscovered mLV's in CFS. They were named, appropriately, "CFS Type I", "CFS Type II", etc. "

AND

"Now Dr. Alter will give XMRV its next big test - he will search for it in a wide variety of disorders. The danger is that it is widespread in chronic diseases, which, would negate its importance unless it really is some sort of superbug. Hopefully, it will be found clustered in a series of 'NEID's' such as FM, GWS, MCS, IBS. Now we await the results of the briefing"


Now if I understand what I'm reading here - FM is fibro, GWS must be Gulf War Syndrome, MCS Multiple Chemical Sensitivities and IBS Irritable Bowel Syndrome. I believe I have three of those - FM, MCS and IBS. If this virus is the culprit it would finally make sense of what broke down my body so badly that I get all this crapola all the freakin' time - and why I'm sick all the freakin' time. Geezaloo - would I LOVE for this to be found finally for all of our sakes!
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

GSDgirl
Veteran Member


Date Joined Mar 2010
Total Posts : 1286
   Posted 8/24/2010 5:33 AM (GMT -7)   
I have been thinking about this.  I had hepatitis C and will always carry the antibodies.  I did 6 months of interferon which is like chemo and an antiviral pill twice a day for 6 months called ribavirion.  The drugs about killed me (not literally) but I did clear the live virus.  I have been clear for 2.5 years but these fibro symptoms have gone through the roof since.
 
So I am wondering why the antiviral drug didn't help, plus there are so many people that treated and are in the same boat as me and some are worse.  I am just rambeling with my thoughts.
 
The mayo clinic has also come up with a syndrome called post interferon syndrome but there isn't much info on that yet.
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,
 

HappyCat
Regular Member


Date Joined Apr 2010
Total Posts : 71
   Posted 8/24/2010 7:44 AM (GMT -7)   
I donated blood yesterday, and discovered that they are deferring all donors with a CFS diagnosis because of the possibility it is caused by a virus. I mentioned the fibro (because many think the two conditions are closely related, if not the same), but they haven't been instructed to defer fibro patients "yet." While I am excited about this research, I would sure hate to give up donating.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 8/24/2010 7:57 AM (GMT -7)   
I hope they figure this all out soon.  I've heard it could possibly be from a virus and I've heard it might be a neurological problem and I've heard it could be from low serotonin, etc.  But, I'm glad they are really starting to study this.  It's about time!
 
Sherrine
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/24/2010 10:09 AM (GMT -7)   
Do you want to see part of the reason this hasn't been studied very hard? Check this out:



Note this info comes from the sidebar of an article about this current research - it shows the moral bankruptcy at the CDC may have played a large role in the hindrance of this research. My source: http://www.cfscentral.com/

"In 1996, a congressional investigation proved that CDC scientists siphoned millions of Congress-appropriated CFS dollars to what then-CDC director Jeffrey Koplan told the Washington Post were "more important" maladies, including measles and polio.

The first report of an association of XMRV with human disease came in 2006—from U.S. researchers at the Cleveland Clinic studying a virulent form of prostate cancer, not CFS. But then a German study found no such association, a harbinger of the conflicting findings of the CFS XMRV studies to come.

Dr. William Reeves and the CDC
After Dr. Judy Mikovits's paper linking XMRV to Chronic Fatigue Syndrome was published in Science in October 2009, Dr. William Reeves, the head of CFS research at the CDC for 20 years until February of this year, told the New York Times: “We and others are looking at our own specimens and trying to confirm it. If we validate it, great. My expectation is that we will not.” Reeves also told the Times that the culprits behind CFS were more likely sexual and emotional abuse and an inability to handle stress.

Privately, insiders have told CFS Central that they did not expect the CDC to find the retrovirus because the agency’s CFS definition has been watered down from one neuroimmune disease to five different combinations of depression, insomnia, obesity and “metabolic strain,” as Reeves himself explained in a 2009 paper. In a 2008 CDC paper, “An extended concept of altered self,” Dr. Jim Jones argued that illnesses such as CFS are “illness states” rather than “true diseases.” A CDC paper from 2006 on coping styles found CFS patients guilty of “maladaptive coping” and “escape-avoiding behavior.” "

Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!
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