XMRV, do you have both CFS and another autoimmune disease?

wciarci

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Just wondering how many have both CFS/ME and another autoimmune illness? I was diagnosed with Scleroderma first and then CFS, FM. The scleroderma was cured with AB treatment (minocin twice a day for three years). I am wondering if XMRV could be implicated in scleroderma, lupus or RA.

Wendy
 

Sunshine

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An interesting question. I would hazard a guess that this is likely but patients likely do not know, because of restrictions placed upon them accessing doctors.

ME CFS is a label most medics refuse to go near with a barge pole. This, coupled with the physical limitations of actually getting an ME/CFS patient to a hospital/clinic appointment would make the detection rate of autoimmune disorders very low. I am increasingly confident within a few years many conditions will be found to be caused by having the state of ME/CFS, caused by XMRV.

Quite strangely, ME CFS patients seem to be taking the thought of being infected with XMRV in their stride (no real fear), whilst if you ask other people with immune based diseases of unknown origin they are quite cautious about even being tested for XMRV, never mind considering if they could have it too and what this could mean.

Once changes in attitudes happen from doctors then yes, maybe RA etc is not uncommon in people with XMRV and long term ME/CFS, who frequently report chronic joint pain and 'attacks' of inflammation that make them utterly disabled. (Currently symptoms often blamed on the ME CFS patients over imaginative mind).
 
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Wciarci-interesting that you mentioned scleroderma. My aunt has both scleroderma and rheumatoid arthritis (diagnosed in her twenties) and has early onset heart failure (late 40's). My mother (her sister) has fibromyalgia and I believe CFS (though not diagnosed). Their other sister has suffered 2 bouts of a rare leukemia. I have FM, CFS, and am XMRV positive. I definitely believe that these are all connected. I also believe that I was born with XMRV. I developed severe CFS a few years ago after undergoing back surgery. However, looking back, I had most of the symptoms that I have now beginning at puberty. They were just less severe and more intermittent. My father has always said that we have 'bad blood'. Guess he was right!
 
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I was diagnosed with vitiligo, which is an autoimmune skin pigmentation disorder, before I became ill with CFS.

Before I became ill with CFS, I had a bone graft to repair damage from a benign cyst in my ankle (the talus.) I used donor bone, which was heat sterilized -- but I have heard somewhere that XMRV isn't vulnerable to the heat treatments they use. One year later, I became ill with extremely swollen glands, fever, and severe myalgia, within 5-6 days of receiving a flu shot. I was initially diagnosed with "Cat Scratch Fever," because my glands were so swollen, but nobody ever actually did the PCR to look for Bartonella. A few weeks later I had an attack of shingles. A few months after that, I was diagnosed with Fibromyalgia. But I "recovered," and for another 18 months believed I was well. Then, I received an MMR vaccine (measles, mumps, rubella.) Within one week of receiving the vaccine, I became ill with a sore throat, and the joint in my left elbow became severely swollen and painful. I also had swelling and pain in my neck, wrists, and finger, and had severe episodes of post-exertional malaise I was diagnosed with reactive arthritis, which eventually traveled and inflamed every joint in my body, except my jaw. I had severe problems and pain with the reactive arthritis for four years, but in the last two I have hardly had any symptoms of that nature, and very little pain unless I am over-exerting myself. I do have severe post-exertional malaise, and have had ever since the MMR shot. I started having frequent, severe migraines 2 years ago for the first time in my life, so now I have that instead of the joint pain. I met Canadian Consensus Criteria for diagnosis with CFS by Dr. Batemen earlier this year.

Anyway, I'm not sure if my reactive arthritis counts as auto-immune in some sense -- I was sure I had RA or Lupus or something of that nature for years. But possibly it just took me four years to clear the Rubella virus from my joint tissues.
 

wciarci

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Thanks for the replies. Sunshine, I agree, once diagnosed with FM or CFS the doctors don't want to look at anything else. My first doctor diagnosed me with FM and told me to find another doctor, who then diagnosed me with Scleroderma and successfully treated that with AB, thankfully. JMK my family has 'bad genes' too. My niece has lupus and my nephew FM and RA is scattered throughout. Please have your Aunt look into antibiotic treatments, very simple, minocin twice a day for three years. Very low dose, no side effects. Scleroderma is a terrible disease. Kdeneris, it seems like something else is going on with you too. I too became ill after my one and only shot (for the flu). I have always wondered if that triggered something. I wonder if XMRV will be found as a culprit for many other illnesses that have been a mystery to science other than there is a family history to them.

Wendy
 
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Hi, Wendy. I think the issue is with vaccines made with live virus, which some flu shots are. The MMR contains live, attenuated (weakened) vaccine. I've been afraid to vaccinate my daughter since I became ill when she was in second grade. I myself recently risked getting a tetanus shot, and nothing bad happened. So maybe I will let her resume the vaccination schedule with only vaccines containing killed virus...I'm still having an internal debate about it.

I don't know if I'm XMRV+ or not yet. But XMRV is the only explanation for my health history that has ever made sense to me.
 

*GG*

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Thanks for the replies. Sunshine, I agree, once diagnosed with FM or CFS the doctors don't want to look at anything else.Wendy
this is very unwise on their part and ours, we should not "chalk" everything up to CFIDS, I know it's easy to do, I mean with all the new issues we have, If we ran to the Drs everytime, we would not need a place to live!

PS Not sure if FMS is Autoimmune? But I have been diagnose with Fibro also.
 

ahimsa

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In addition to ME/CFS I also have a diagnosis of endometriosis. Last I checked the cause for endometriosis is still unknown -- I have no idea whether it will turn out to be an autoimmune illness.

However, there has been at least one research study that shows a correlation between endometriosis and ME/CFS and other illnesses (some autoimmune). Here's an extract:

A research team from the Endometriosis Association in Milwaukee; the National Institute of Child Health and Human Development, Bethesda Maryland; and the School of Public Health and Health Services at George Washington University in Washington, D.C., carried out and analyzed a survey of 3,680 members of the Endometriosis Association who had endometriosis. They found that among these women:

• 20 percent had more than one other disease

• up to 31 percent of those with co-existing diseases had also been diagnosed with either fibromyalgia or chronic fatigue syndrome and some of these had other autoimmune or endocrine disease

• chronic fatigue syndrome was more than a hundred times more common [in patients with endometriosis] than in the female U.S. population generally

• hypothyroidism was 7 times more common

• fibromyalgia was twice as common

• the autoimmune inflammatory diseases (systemic lupus erythematosus, Sjgren’s Syndrome, rheumatoid arthritis, and multiple sclerosis) occurred more frequently

• allergic and atopic conditions such as asthma and eczema were higher. 61 percent of endometriosis sufferers had allergies compared to 18 percent of the U.S. general population, and 12 percent had asthma compared to 5 percent. If a woman had endometriosis plus an endocrine disease the figure for allergies rose to 72 percent and to 88 percent if she had endometriosis plus fibromyalgia or chronic fatigue syndrome.

• two-thirds reported that they had family members with diagnosed or suspected endometriosis, confirming research that suggested there is a familial tendency.

“These findings suggest a strong association between endometriosis and autoimmune disorders,” said lead investigator Ninet Sinaii from the National Institute of Child Health and Human Development. “Health care professionals may need to consider these disorders when evaluating their patients for endometriosis.”
The one good thing about endometriosis, vs ME/CFS, is that diagnosis is based on physical results. The doctors can't say you're imagining having endometriosis when laparoscopic surgery finds misplaced endometrial tissue (outside the uterus). Sadly, doctors can claim (and, yes, some do!) that patients are imagining or exaggerating their pain.
 

ukxmrv

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I am XMRV+ and also have endometriosis. Fortunately for me, it's just a small amount and only recently. Allergies and asthma but nothing else that I can think of that would be strictly autoimmune.
 

OverTheHills

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I don't know my XMRV status yet but I have had endometriosis since puberty. Confirmed by an op (in NZ)

[digression didn't get this diagnosis until I left the UK - not even any investigation.The fact that I was vomitting, unable to walk or stand every month, was entirely irrelevant to doctors. The morphine drips in accident & emergency- just another faulty illness belief].

Very oddly this has steadily improved over the years I have had ME (hormone balance now wrong?).

My pre-existing allergies have got worse since ME and I have several lovely new ones. I have had bad polymorphic light eruption (immune reaction to changes in skin after exposure to UV) predating ME. Now I have hyperthyroid (they think this is autoimmune but not confirmed yet).

Since I'm hoping to have (treatable) XMRV I'm also hoping that this sort of rubbish immune/autoimmune background is a positive sign.

OTH

PS I'm an optimist at heart, had you guessed?
 

wciarci

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Overthehills, you made me laugh, perhaps unintentionally but I get the optimist part. If I wasn't an optimist I would be mad now. My journey began as a child with asthma (not expected to live) and then endometriosis with almost my first period, blamed on female hysteria. It would be almost 20 years before they diagnosed endo. And then this dreaded disease (among others).

ukmrv and ahisma, yup, again the endo connection. I think XMRV hides in organs, preferably the reproductive kind. Perhaps as a mechanism for it's own procreation, to be passed on.

ggingues, I am a NH native, banished to the outer reaches of ct. Yup I hear you. That is why I started this thread, just to see if other issues are at play. I wonder about the onset, ie. sudden flu like illness triggered by something that awoke a sleeping giant. If XMRV is in 3-7% of the population and a certain percent of those have had other issues and then this disease, well then something turned it on. My guess is that we are the 3-7 percent who have had something 'turned on' and not in the good sense. '-)
 

urbantravels

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One of the theories about endometriosis is that it's caused by some kind of immune dysfunction - that normally those "stray" endometrial cells would be cleaned up by the immune system rather than floating around and implanting in places where they don't belong :eek:

I'm in the endometriosis club too. Hooray! I probably had it for several years at least before diagnosis...by the time it was finally diagnosed I was coming down with CFS. At first I thought the fatigue was one of the symptoms of the endometriosis and would go away once I got treated for the endo. Alas.
 

floydguy

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Yes, I agree. I just found out that recent vertigo was being caused by impacted ear wax not CFS/MCS issues. We all get too used to blaming everything on CFS; or ignoring things that we would otherwise address. Who wants to make yet another appointment to see a doctor?
 

SunnyGal

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I am XMRV+ and I have not been officially diagnosed with endo but told that I was more than likely developing it a few years back. A GYN specialist who treats infertility with antibiotics (and quite successfully, too) says that endo can be cured by a LAP removing all the tissue and IV antibiotics given at the same time. He says endo is due to infection but you have to physically remove all the affected tissues to fully get rid of it. I have a friend who in her early 20s unintentionally had all endo tissue removed and was given IV antibiotics at the same time and she was cured of her endo. Who knows, though. Seems to be another area that isn't researched much, unfortunately.

No other autoimmune issues for me. I suspect genetics plays a part in this since no one in my family has an autoimmune issues.

Sunny
 

Francelle

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Just wondering how many have both CFS/ME and another autoimmune illness? I was diagnosed with Scleroderma first and then CFS, FM. The scleroderma was cured with AB treatment (minocin twice a day for three years). I am wondering if XMRV could be implicated in scleroderma, lupus or RA.
Wendy - wondering how you were diagnosed with Scleroderma? I have a friend with severe RA, who believes that I probably have Scleroderma as so much 'fits' but my test results don't equate!
 

wciarci

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Francelle,

You should go to a rheumy who has extensive experience with scleroderma. I had 5 doctors misdiagnose me before I found a good doctor. Symptoms: hair loss, extreme fatigue, symmetrical hand/wrist pain and weakness, sausage fingers, tight hard skin, hyperpigmentation and others that I can't remember. It is essential to be diagnosed early and put on Minocin twice a day. This will cure you but any damage done is permanent. I recommend Dr. Trentham at Beth Israel in Boston. Most doctors never see a scleroderma patient, he has treated well over 600. Good luck!

Wendy
 

bullybeef

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Prior to being diagnosed with ME, I had suspected bowel disease (IBD). In 2006, I had a biopsy and I luckily got to see the report myself and it stated colitis.

However, after stewing for three months before I got to speak to my gastroenterologist, he just said my result was normal, and I probably just had a severe case of IBS. My GP was furious.

Five months later, whilst I was awaiting a second opinion at another hospital, I had what is described as a IBD attack, which was the most unpleasant experience of my life. Two weeks or agonising abdominal pain, nausea, vomiting, and passing blood. My only regret was I didnt take myself of to hospital so they could see for themselves what was happening. Instead a family member paid for me to have a private consultation.

Eventually, my second opinion referral was brought forward, and over twelve months of further tests proved inconclusive. My GP was stumped, but said I may have gone into a remission. It still wouldnt surprise me if I did have some form of bowel disease, and I think it is quite poignant that Dr. M and Dr. Katz recently said that autoimmune diseases could also be linked to XMRV.

I recently watched a documentary were a person with bowel disease was taking steroids. But he suddenly became very sick and on deaths door. What had happened was, he had a parasite since childhood, and when he started taking steroids to reduce his immune system, the parasite flourished, spread, and almost killed him. This could explain how a autoimmune system could also enable XMRV to reproduce if a person is taking certain meds.
 

omerbasket

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I have fibromyalgia and I also have Crohn's Disease.
But I wasn't yet tested for XMRV so I can't say if I also have XMRV.
It is my hope too that if I have XMRV - the virus is causing all my health problems, thus the health problems might be resolved if I'll get rid of the virus.