Virus XMRV that's linked to autoimmune disease explains possibly IC flare ups

[akh]

I searched and there were only two other threads on this forum discussing one very interesting breakthrough with other autoimmune disease. There are solid studies linking CFS and Fibromyalgia to the pressence of the retrovirus named XMRV.

The Whittemore Peterson Institute is largly responsible for this research, although other places like The Cleveland Clinic are also studying a link with this disease. The results are stunning- 95% of the people studied who had both Fibro and CFS had XMRV, with antibodies to XMRV in their blood.

I mention the antibodies because critics are trying to explain their results away by accusing the conductors of the study of having XMRV present as a mere contaminent in the studies. Antibodies to XMRV present in the blood of patients tested however indicates that the virus was already present in the CFS and Fibromyalgia patients tested.

I've been studying this subject for a few weeks and although I'm sure some people will view this information increduously, personally I think this is about all I can find to explain my crazy IC symptoms.

Either way, review the articles and information before posting please. I posted an article before about using adult stem cells from adult bone marrow to create new bladder cells and people who didn't read it, posted long political diatrabes on both sides.

Reading goes out of style more and more but trust me it is worth it, especially with this nasty, nightmarish, miserable disease, reading sometimes gives me inspiration to keep fighting the good fight with this.

XMRV Breakthrough research for ME/CFS, by WPI (Part 1 of 2) - stress hormones and vaccines turn on the virus!
http://www.fms-help.com/XMRV.htm
Sounds like my IC symptoms... hmmm.....

Background information on XMRV and autoimmune disorders:
http://www.scientificamerican.com/ar...rus&print=true

Article on the politics of advocacy for autoimmune disease- this mentions why there is a lag on the response to this astonding research. http://cfschronicles.blogspot.com/




You can tested here:

http://www.codiagnostics.com/XMRV/index2.php

XMRV retrovirus found in CFIDS
http://www.medhelp.org/posts/Autoimm...S/show/1097938

More:
http://cfschronicles.blogspot.com/20...us-stupid.html

Thanks for reading, Annikki!

[cmclien]

I read through the second article, glanced at the first. I think for CFS/fibro thats great if they are on their way to finding a cause of these conditions. I don't however see the correlation between the XMRV and I.C., did I miss it? I don't have CFS or fibro. They haven't been able to prove yet that IC is autoimmune in nature either. I mean yes in the first article she mentioned IC symptoms but they could be totally independent of her CFS condition, or maybe some conditions seem to group together like fibro, IC, IBS, I think migraine but as of yet there isn't a link.

[akh]

Oops

I don't however see the correlation between the XMRV and I.C., did I miss it? I don't have CFS or fibro. They haven't been able to prove yet that IC is autoimmune in nature either. I mean yes in the first article she mentioned IC symptoms but they could be totally independent of her CFS condition, or maybe some conditions seem to group together like fibro, IC, IBS, I think migraine but as of yet there isn't a link.

This was not posted in regard to her IC symptoms in anyway. As of yet there have been no studies that I know of that link XMRV and IC.

However, this discovery is important in that two equally unrelated conditions: fibromyalgia and chronic fatigue syndrome have had XMRV in common as being the most likely source of symptoms.

I think it is fair enough to say that I'm getting curious that if interstitial cystitis doesn't have the same cause: XMRV or something similar. The reason I think this is likely for IC is the strange experience I've had with my interstitial cystitis. Studies have linked bladder stretching as being a causative factor in some cases of IC. My IC started the same way, however I was holding it in for hours while stuck in a hospital bed with fractured ribs and a punctured lung. For the record I was also on morphine and something else (?) for pain.

I met someone else at a support group who had cancer cells scraped from her bladder and this started her IC symptoms. The ICA recognizes this as a cause: http://www.ichelp.org/Page.aspx?pid=916

For all these years, with only a few with actually knowing what was wrong with me, I have wondered how can bladder stretching cause a disease as painful and miserable as this?

This makes no sense. Worse I have Hunner's ulcers too. Hunners ulcers unfortunately return again even after you have them cauterized, like I did in 2009. That too makes no sense.

I've had no theories about how or why this is happening, but the truth is that having such a sudden onset of symptoms after a physical event with my bladder has made me sure this isn't an emotional but a physical illness.

I've had theories about my IC but I was looking up another topic and began reading a blog written by CFS sufferers. When I read about the retrovirus research in regard to that disease, and knowing it is autoimmune like IC, I thought about if XMRV can cause IC. This virus is now the attributed cause of CFS and fibromylagia and I think the research on this is pretty good.

After reading much about disease, I'd say 95% of CFS sufferers testing positive for XMRV and likewise with fibro, is good indication that XMRV is the cause.

Now here is are my thoughts about XMRV and its possible IC relation. XMRV is a virus that likes to embed itself in human tissue. Source:

XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

I'm sure you've heard how "microscopic poring" is one trait of an IC bladder. What I'm theorizing is that this poring allows XMRV to enter into the tissue which underneath the bladder lining and take up residence. Quite frankly I can find no other idea to explain how simple bladder stretching can cause this horrible bladder condition. From my experience this makes sense.

I find it really interesting that XMRV integrates itself into human tissue. This alone almost explains the entire autoimmune "mystery." This research is proving that the bodies of CFS and fibromyalgia are aggressively attacking their own body tissues for a reason! That reason is to kill off the XMRV virus that has taken up residence in their tissue.

It is not too much of a stretch to wonder if the same process isn't going on in IC patients. The only difference is XMRV is hiding out in the bladder tissue
and not muscle, joint or nerve tissue.

The way I see it, most viruses, even the common cold, have their preference of where on the body to attack and temporarily live and replicate. A sore throat means that a virus has decided to use your throat tissue as a place to live and replicate. The word "live" has special meaning because viruses aren't technically alive by the classic definition until they find a host cell. These are strands of DNA, sometimes just RNA, as with XMRV that hijack your own cells.

I could see well why this would cause a chronic, unrelenting immune response in people with CFS and fibro. XMRV is a retrovirus. A retrovirus is different than your average virus. The main reason being is that it attaches its genetic code to your own DNA; this means too that you can pass on the genome for this virus making it multigenerational.

Here's how:

In most viruses, DNA is usually transcribed into RNA, and RNA is translated into protein. However, retroviruses function differently - their RNA is reverse-transcribed into DNA, which is integrated into the host cell's genome (when it becomes a provirus), and then undergoes the usual transcription and translational processes to express the genes carried by the virus. Therefore, the order of steps from a retroviral gene to a retroviral protein is: RNA ➝ DNA ➝ RNA ➝ Protein.

When retroviruses have integrated their own genome into the germ line, their genome is passed on to a following generation.

Source: http://en.wikipedia.org/wiki/Retrovirus

Another reason I'm thinking XMRV has its hand in IC is that most IC patients have other autoimmune diseases. I know someone with fibro who has a daughter who is showing IC symptoms for example. I think XMRV would go a good way in explaining the "co-morbidity" of IC to other conditions.


There are many more reasons that XMRV and its behavior makes me think it is related to IC symptoms. IC is classified in some cases as autoimmune. I generally see it in that way in regards to my own body. I have much frequency and I actually void much in the way of volume too. This to me, seems to follow the bodies logic of how to handle a UTI- which is to flush it out.

Normally most people stop there and I'm left to wonder why my body is terminally confused about the infection it doesn't have. However, the frequency and other false UTI symptoms could be the result of the bladder trying to flush out another pathogen other than e-coli bacteria.

I'm not the first to come up with that idea; even in this forum someone mentioned a urologist or two that treats IC like an infection; just an infection different from the standard e-coli infection.

Lately I've been talking with many people with fibro and CFS and I find they have had the same experience with being ignored for having a seemingly "disease with no cause."

The causality argument that keeps us tethered in a limbo of disrespect as IC patients is a problem people with these diseases experience too.

I hope this helps explain this post. I'd love it anyone wanted to support me in trying to get some research on XMRV and IC.

[cmclien]

Well clearly you have given this alot of thought! Wouldn't that be funny (not) if all autoimmune diseases were actually undiscovered viruses????? I developed hashimotos in the last few years myself. Well anyways, you would think the simplest thing would be to test a bunch of ICers for the virus.

[akh]

Well clearly you have given this alot of thought! Wouldn't that be funny (not) if all autoimmune diseases were actually undiscovered viruses????? I developed hashimotos in the last few years myself. Well anyways, you would think the simplest thing would be to test a bunch of ICers for the virus.

I'm glad you brought this up because my family has a history of serious thyroid problems, and thyroid dysfunction is an issue with so, so many IC patients. Don't quote me as saying this has been linked to XMRV. So far Hashimotos has the same co-morbidity issue with other autoimmune diseases. It is co-morbid with fibromyalgia and CFS.

Here is a link to the list from the WPI on autoimmune disorders officially linked to the presence of XMRV infection:

http://www.wpinstitute.org/xmrv/index.html

Overview

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

We have detected the retroviral infection XMRV in greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entirely new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renowned immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

Because retroviruses are known to cause inflammatory diseases, neurological disease, immune deficiency and cancer, the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS, but prostate cancer and perhaps many others.