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In trying to prove XMRV link to interestitial cystitis I'm finding great info

Discussion in 'XMRV Research and Replication Studies' started by Annikki, Aug 6, 2011.

  1. Annikki

    Annikki

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    Hi, I'm new here and while I have another autoimmune disease, I'm startled by the parallels all these diseases have. Anyhow, my disease is called interstitial cystitis. It is an autoimmune condition specific to the bladder in human beings and felines. Don't think for 10 minutes that this disease is any less relenting than ME/CFS; unfortunately doctors think we are crackpots too and won't treat us. Wessely made his comments about us too and they are sticking. Me, I've lost everything just like you dear people can and do thanks to the medical bigotry which won't go away.

    Interstitial cystitis or IC is like having a permanent urinary tract infection with no pathogen. You go to the bathroom well over 60 times a day. Your symptoms don't stop at night and sleep becomes impossible as a result. The pain is severe. We too give up, we too must fight for answers to why this happens. Our disease manifests many symptoms which are co-morbid to CFS- we too have shrunken adrenal glands (cats with IC have this too and there are studies about this- Google Tony Buffington for these), mitral valve prolapse, low blood volume. I have symptoms myself which match CFS but to a lesser degree. Yet my bladder renders life impossible for me because this disease is an autoimmune condition where the bladder lining is attacked as opposed to neurons. There are neurons in the bladder, FYI and IC is classified as neurological. I believe it fully is.

    Now to the research discussion. I have been spending some time trying to write an article suggesting why testing IC patients for XMRV would be a good idea. Even without studying too hard there are obvious reasons to test it for XMRV. FMS, CFS/ME. Sjogrens, Lupus and more are co-morbid with IC. Strangely so is prostatitis :eek:. I say "strangely" because very few men get IC in the first place. Prostatitis is linked to the onset of prostate cancer- I read somewhere that XMRV causes inflammation in the prostate which sets the stage for cancer. Enough with simple, flimsy arguments.

    I am aware the XMRV studies are being attacked somewhat relentlessly. Most of my research is using the premise it is XMRV causing IC, CFS, FMS and more. I hope XMRV is still a possible cause. Regardless, in an effort to pin down how XMRV could begin to cause the cascade of IC symptoms I am finding information which secures this autoimmune disease as having the same nature as other autoimmune disease.

    What I've found in studying about bladder physiology in relation to IC and other conditions is the same issues- purinergic receptors, nerve cells and ATP abnormalities form the basis of IC symptoms. While surely this sounds very odd to a newbie to the topic, this is all very true. In the bladders of people with interstitial cystitis, there is an abnormally high amount of extracellular ATP. Most researchers are figuring that ATP has a signalling role, and this is very true in the bladder. Stretching a bladder cell can cause it to release ATP- other cells in the body release ATP due to physical changes. All human bladders release ATP during stretch- it is part of the way the nervous system detects if the bladder is full. In IC patients, this level of ATP is very high and studies have ruled out the other things like inability to re-uptake ATP.

    I know very well that CFS/ME symptoms have a link to ATP too, and Dr. Light is doing some great work tying purinergic receptors which bind to ATP in CFS and FMS. His work is spot on in my opinion- that is because the pathology of IC is rooted in purinergic receptors too. This is where it gets ugly because I have far too many studies to list, but I'll give it a go.

    My original idea is that XMRV in some way is modifying both purinergic receptors and ATP-binding cassettes. One list showed there are XMRV homologues to a few ATP-binding cassettes. I haven't linked the purinergic part to this yet. I'm going to have to read more about mitochondria and how ATP is produced and get a bigger picture of the entire ATP process in healthy people and us.

    The interesting part of what I am sharing is that there have been a few new developments in IC research, one of which being a unique siaglogly copeptide found in IC patients urine. Right now my head is spinning over this because p53, a key cancer related gene has been found as the source of this unique siaglogly copeptide in IC officially named "antiproliferative factor (APF)."

    It is findings like this which really make it hard for me to shelve XMRV (and I know full well this is a political issue so I'm not buying everything I hear).

    Unfortunately, given the sheer enormity of information I'm sifting through right now, I'm going to have to share just dry data and a very brief theory statement. I'm learning about 3 different diseases in tandem, I am having to learn biochemistry as I go, and there are so many good articles out there. The good news is that all the information I'm finding fits together very, very well. I can't help but think we are all working to solve a collective mystery about a disease with different manifestations and is a politically hot item for some damned reason.

    For starters, I'm going to share a good article about IC with good basic information and the least amount of Wessely school drivel inserted (yes, the disease is real!!): http://findarticles.com/p/articles/mi_m0FDN/is_4_8/ai_111303984/

    Here is my old, fairly simple thesis:
  2. currer

    currer Senior Member

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    Hi Annikki

    You have done a lot of research.

    Why not just get yourself tested by the WPI. If you are positive you can share your ideas with them.

    They might be interested to find out what you have discovered.
  3. svetoslav80

    svetoslav80 Senior Member

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    Never seen a longer post. Hope you find a treatment.
    The Spitfire likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    Annikki,

    I am XMRV+ but don't have IC. That doesn't mean much as I've heard other PWME mention IC before and it seems to be common.

    Maybe set up a poll and ask XMRV+ if they have IC?

    There is a formal poll somewhere else on the internet but I have lost track of where it is (will post the link if I find it).
  5. pamb

    pamb Senior Member

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    Hello Annikki,

    First, I'm sorry you have a reason to be here. IC is, as you have said, truly horrible to live with.

    Please do come back and let us know if you are XMRV + or - through the WPI- if of course you can get together the money to be tested.

    Here is an odd coincidence - or not - to add to your very scientific analysis. My husband has had ME for 10 years now, his daughter, now in her late 40's, had horrible IC for many years but it seems to have calmed down somewhat. However, in the last ten years she has really suffered from FM. I was thinking the hereditary link may support a possible A+B XMRV likelihood for them both, now that you have added IC to the list, I sure wonder if the odds have increased.

    Fingers crossed the blood working group have some positive results from the current phase. It is a long wait for Lipkin, or so it seems.
  6. Annikki

    Annikki

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    Sorry for the length of the thread but everything is really horrible for me now and i wanted to get something posted. Sorry about that. I don't have money to go get tested; I'll be lucky to eat this month. This is what lack of social support and medical care does. This sucks because I haven't been getting enough sleep between symptoms and doing a herculean effort of trying to make it while unable to work and more. There is stuff I want to do but there is no way for it to happen and it makes me feel sad. On the IC forums there isn't discussion of or awareness of the politics and research which occurs here. I just wanted to share what I had but there is just too much for me to do. Worse, I write like crap when I don't have sleep.
  7. its ME Jeff

    its ME Jeff

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    Very interesting! I am XMRV+ and suffer with M.E. My wife suffers from I.C. She has not been tested for XMRV.
  8. GaryK

    GaryK

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    I cant afford the XMRV test either BUT I can tell you that I am an ME person who does have the I.C. Symptoms.
    Thank you very much for your hard work and posting it here Annikki. :)

    I'm finding this very interesting....and please keep the Good work going as much as you can in the time you can afford.:)

    GaryK
  9. Annikki

    Annikki

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    Ah, the contagion issue. A friend of mine is sick with ITP and this is another autoimmune disease linked to XMRV by the WPI. I wonder about the contagion issue and she's knows I'm researching XMRV. At best we drank out of the same coffee cup. I still wonder if IC people could be carrying this virus too. Given the location of the urethral opening, sexual transmission model comes to mind.

    More to the point, the location of the prostate gland makes you wonder about XMRV and sexual transmission. Chronic prostatitis is strangely co-morbid to interstitial cystitis- almost exclusively women get IC. Just part of why I can't help but think XMRV and IC are related: http://www.ichelp.org/Page.aspx?pid=355

    I'll repost the full list of conditions that occur in tandem to IC from the Interstitial Cystitis Association website:
  10. Hip

    Hip Senior Member

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    I believe I had overactive bladder (OB), which is very similar to interstitial cystitis (IC). The main difference between OB and IC seems to be that there is pain involved with IC, but not with OB. However, these conditions are otherwise very similar.

    I had OB for many years, but it has abated a little now that I also developed chronic fatigue syndrome, for some reason.

    My OB started out of the blue, and from being a person with really excellent bladder control (I would often not need to go at all through my 9 to 5 working day), I suddenly became hostage to the bathroom, having to rush with incredible urgency to wee, even if my bladder was just full. Many times this urgency to wee came on so fast and intensely, that I have had to screech the car to a halt, jump out, and wee behind a tree!

    The urgency to urinate is caused by strong muscular contractions of the bladder, due to nerve actions that cannot be controlled or suppressed (as I am sure you know).

    My OB symptom came on suddenly, within a week or so, after dating a new girlfriend. I think that this was probably because I caught a respiratory virus/bacterium from her during kissing (or perhaps more likely, from oral sex, with the microbe entering the bladder via the urethra).

    Incidentally, a similar thing thing happen to me 12 years later, when I caught a respiratory virus again from kissing someone I was dating, which lead to a horrible viral sore throat appearing the next day after the first date, a sore throat which never went away; and this sore throat virus soon plunged me in CFS but my CFS is another story, let's focus on OB/IC here.

    Now, no viruses or bacteria have yet been found in the bladders of OB/IC patients (although I understand that some cases of OB are caused by infections treatable with antibiotics). Why might this be? Why have the infectious agents presumed to be causing IC and OB not been found as yet?

    One likely explanation for not finding any microbe in the bladders of OB/IC patients is that OB/IC may be caused by a "stealth" virus like coxsackievirus B. Coxsackievirus B is strongly linked to autoimmune conditions, so it fits the bill for OB/IC very well.

    Most people with CFS know that coxsackievirus B has a stealth mode of infection that is hard to detect, as very few viral particles are created (so there is only a very weak antibody response, which thus only shows up on the most sensitive antibody tests). Instead of normal viral particles being produced, in a chronic coxsackievirus B infection, you find that there is mostly just RNA from the coxsackievirus B. This RNA infection is the stealth mode of coxsackievirus B (and similar enteroviruses); this stealth mode was only discovered around a decade ago (by Dr Nora Chapman, et al). The existence of this stealth mode of coxsackievirus B is why, in regular lab tests, infections could not be found in many CFS patients, even though their symptoms indicated that there was apparently an ongoing infection. Now is it known and understood that coxsackievirus B does have a stealth mode, and indeed, this stealth infection can now be tested for these days.

    So coxsackievirus B is really the perfect candidate as a potential cause of OB/IC, as:

    (a) it can cause a stealth infection that cannot be easily detected (and we know that the pathogen causing OB/IC has not yet been detected)
    (b) coxsackievirus B is strongly linked to autoimmunity (OB/IC is an autoimmune condition)
    (c) coxsackievirus B loves to live and replicate in the mucous membranes (the lining of the bladder is a mucous membrane)

    For more info on coxsackievirus B, and the "stealth" infection mode it has, see the work of Dr John Chia (there's lot of info about Chia on this site; refs: 1, 2).

    These RNA stealth infections of coxsackievirus B and other enteroviruses are also called "non-cytolytic enterovirus", "non-cytopathic enterovirus", or "defective enterovirus" infections.


    The best way to test for these stealth type coxsackievirus B infections is via biopsy of the tissues in this case, the bladder tissues and seeing if any RNA from coxsackievirus B is present; or alternatively, seeing if any VP1 protein from coxsackievirus B viral particles is present in the bladder biopsy sample.

    Chia's lab provides a service for detecting VP1 protein from coxsackievirus B / enterovirus in tissue biopsies. For CFS patients, the biopsy is normally taken from stomach tissues by endoscope.

    Another way to test for these chronic stealth infection of coxsackievirus B is via the very sensitive coxsackievirus B antibody detection test provided by ARUP lab.


    Autoimmunity Caused By Infections

    Coxsackievirus B is a chief suspect not only for causing CFS, but also a chief suspect for causing the autoimmune damage to that leads to type 1 diabetes.

    However, coxsackievirus B / enterovirus are not the only types of microbes that have been linked to autoimmunity:

    Autoimmune diseases are also associated with the viruses Epstein-Barr virus, cytomegalovirus, parvovirus B19 and HIV; and the bacterium Mycobacterium tuberculosis. (Source: List of human diseases associated with infectious pathogens).

    But all these (apart from coxsackievirus B) are easily detectable, so presumably they would have been found in the bladders of OB/IC patients, if they were the cause of OB/IC.


    An Effective Treatment of Overactive Bladder (OB) and Interstitial Cystitis (IC) ??

    Some years ago I made a fortuitous discovery that the herb Ruta graveolens significantly improved my OB. In fact, even when I stopped taking Ruta graveolens, the improvement this herb made in my OB symptoms still remained for months.

    Ruta graveolens has both anti-microbial and anti-inflammatory properties, and either of these may be the reason why it worked for me.

    This herb is something you may want to try. I would be very interested to hear if you got similar good results from taking Ruta graveolens. Note that Ruta graveolens should not be used during pregnancy due to the risk of miscarriage.
  11. Hip

    Hip Senior Member

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    Why Ruta graveolens treats interstitial cystitis / overactive bladder so well

    Update:

    I think just discovered why the herb Ruta graveolens (common rue) works so well for interstitial cystitis / overactive bladder: I think it's because this herb contains a substance called 5-methoxypsoralen that alters potassium channel fucntion in cells (ref: here), and potassium channels are implicated in interstitial cystitis (ref: here).

    Definitely worth trying the herb, for anyone with interstitial cystitis / overactive bladder.
  12. warriormom

    warriormom

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    Very interesting. My daughter had the IC symptoms and diagnosis before CFS/ME onset. Is the Ruta Graveolens available at GNC?
  13. Hip

    Hip Senior Member

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    Ruta graveolens - buying guidelines

    Ruta graveolens is a bit of an obscure herb, so you you'll probably have to buy it online.

    I suggest buying Ruta graveolens as bulk powder, as it is much cheaper than way:

    Ruta graveolens powder (US)
    Ruta graveolens powder (UK)

    You can also buy Ruta graveolens in tinctures, but it is best to go for bulk sizes (like or a liter or more), as smaller size tinctures work out expensive, given that you need to take 2 ml (= 0.07 fluid ounces) or more each day.

    Ruta graveolens tincture (US)
    Ruta graveolens tincture (UK)

    Avoid any homeopathic formulations of Ruta graveolens, as there is no Ruta graveolens whatsoever within such formulations you might as well drink pure water (which what homeopathic formulations are).
  14. Hip

    Hip Senior Member

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    Will Ruta graveolens (common rue) also help treat CFS?

    Since interstitial cystitis seems to be a predisposing factor to CFS, it may be that a long term treatment using Ruta graveolens may also improve CFS symptoms (for people that have interstitial cystitis / overactive bladder as well as CFS).

    It's extremely interesting that cellular potassium channels are implicated in interstitial cystitis.Potassium channel dysfunction is also a part of the picture of CFS (see Cort's article on channelopathy in CFS).

    This makes me think that this potassium channels connection may be the reason interstitial cystitis can predispose an individual to CFS. Interstitial cystitis is already messing with your potassium channels, so perhaps you are already halfway to CFS when you have interstitial cystitis.

    Then if you go on to catch a nasty virus like coxsackievirus B, which itself messes with various ion channels (ref: here), including the potassium channel, it is perhaps no surprise that IC + coxsackievirus B leads to CFS.

    So Ruta graveolens's effect on potassium channels may be of general benefit in CFS.
  15. warriormom

    warriormom

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    Great info...I will have my daughter give it a try. :thumbsup:

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