EPSTEIN-BARR VIRUS in MC and AUTOIMMUNITY!!

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 10:38 am

Are any of you familiar with Dr. Ayers? (I vaguely recall Tex mentioning him) I just stumbled across his blog, and I am blown away. I truly believe in the theory of cryptic/hidden infections, and he acknowledges that treating them with long-term antibiotics can be difficult and very dangerous, so an anti-inflammatory lifestyle and diet may be our only option to try and stay healthy. I actually wonder now whether gluten is the cause of anything, or whether gluten intolerance is simply a side effect of the inflammatory problems we all have. I've realized that ALL my symptoms started after I had mononucleosis as a 12 year old. Could good ol' Epstein Barr be the cause of all my connective tissue issues, GI problems, skin rashes, temperature and exercise intolerance? Maybe a GI bug I picked up overseas? Or Lyme Disease?

If we assume this is true, and some people are doing the Marshall Protocol of pulsed anibiotics to treat these stealth infections (assuming you can find out which one you have), is it only worth trying the treatment when you are sicker than you can handle? Are our crazy anti-inflmmatory diets just a band-aid on a problem we have little control over? If our particular infection needs the body to stay cool, could we kick it in the butt with more heat than we can tolerate, like hot tubs, saunas, etc?

I want to win this battle, not let these parasites have their way with me!!

http://coolinginflammation.blogspot.com ... tions.html

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 10:41 am

Here's something else I read about Vitamin D (not from Dr. Ayers). I don't know the original source, but I recall some group warning that Vit D supplementation was not advised for people with Crohns, Lupus and other granulomatous autoimmune diseases. Could this be why?

Vitamin D research is discussed in light of the hypothesis that the lower average levels of vitamin D frequently observed in autoimmune disease are not a sign of deficiency. Instead, it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes. The VDR dysfunction causes a decline in innate immune function that causes susceptibility to additional infections that contribute to disease progression. Evidence has been accumulating that indicates that a number of autoimmune diseases can be reversed by gradually restoring VDR function with the VDR agonist olmesartan and subinhibitory dosages of certain bacteriostatic antibiotics. Diseases showing favorable responses to treatment so far include systemic lupus erythematosis, rheumatoid arthritis, scleroderma, sarcoidosis, Sjogren's syndrome, autoimmune thyroid disease, psoriasis, ankylosing spondylitis, Reiter's syndrome, type I and II diabetes mellitus, and uveitis. Disease reversal using this approach requires limitation of vitamin D in order to avoid contributing to dysfunction of nuclear receptors and subsequent negative consequences for immune and endocrine function. Immunopathological reactions accompanying bacterial cell death require a gradual elimination of pathogens over several years. Practical and theoretical implications are discussed, along with the compatibility of this model with current research.

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 10:47 am

And in research dating back to 1984 (2 years before I got mono!), they discovered that the Epstein Barr virus can cause the body to create autoantibodies to smooth muscle (my highest one!), thyroid, stomach, pancreas and nerves! Smooth muscle antibody is mostly indicated in autoimmune hepatitis, a disease that commonly affects young women, probably after they had MONO!!

http://www.ncbi.nlm.nih.gov/pmc/article ... 8-0426.pdf

MBombardier · Post by **MBombardier** » Wed Jun 13, 2012 12:08 pm

Geez, Louise... I mean Zizzle, lol. Well, I'm not going to change my Vitamin D intake at this point. I just got it checked and it is a comfortable 51 ng/ml, or however the heck they measure it. Since I live in the mostly cloudy and cool PNW, I want to keep it there, at least until I know more about the possible VDR dysfunction.

I don't think I've ever had mono, but I don't really know. It would be interesting to see the results of a test for the virus. I think I will suggest to Lauren that she be tested for it. She was not real thrilled with the information I sent her on metformin that you gave me (and a couple of other resources), but hopefully she will come off it since it is contraindicated in AIH.

Post by **tex** » Wed Jun 13, 2012 1:16 pm

Call me an ignernt ol country boy, but I have a problem accepting the concept discussed in that quote. First off, why would a phagocyte need any vitamin D receptors in the first place? Their job is to destroy by ingestion, pathogens, dead cells and various detritus, not distribute vitamin D. It's not like they're nurturing the cells in the body's tissue, or controlling the immune system. They're the cleanup crew -- that's all they do. They're expendable.

If limiting vitamin D intake is the key, then why do those who are vitamin D deficient just get more diseases, and those who increase their vitamin D level become healthier and more disease resistant?

Tex

Gloria · Post by **Gloria** » Wed Jun 13, 2012 6:48 pm

I'm intrigued by the possible connection between having mononucleosis and MC. I had mono when I was 22. Is another survey in order?

Gloria

maestraz · Post by **maestraz** » Wed Jun 13, 2012 8:00 pm

I know there has been discussion within the last year about mono. I had it at age 25 or 26, and I was sick as a dog. Believe me, Marliss, if you'd had it, you'd know it. I was out of work for 8 weeks. And the symptoms were not unlike a really bad MC flare, except no D; crushing fatigue, achiness, brain fog. I believe I have also had several less severe relapses along the way.

I, too would like to see a poll. I keep thinking, mono affects the lymph glands; in fact, to this day, when I get really stressed or tired I can feel it in the lymph glands. And now lymphocytes are in my colon. And how does all that relate to developing something like lymphoma?

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 11:35 pm

One of my best friends was recently diagnosed with hashimoto's thyroiditis and subsequently developed severe gluten intolerance, possibly triggered by a hysterectomy. Prior to all of this, she was found to have a high titer for Epstein Barr, and was told she probably had Chronic Fatigue Syndrome. She had mono in her twenties. Her doc said there was nothing she could do about the Epstein Barr, and the symptoms would come and go...I'm not sure her doc classified this as a reactivation, a chronic infection, or what. My other friend with Hashi's also had mono in her teens.

Of course, since Epstein Barr is a virus, so the pulsed antibiotics don't apply. EB is in the herpes family of viruses, which many know can become more activated when our defenses are down due to stress, etc.

I just heard of a friend's child having some other herpes-family infection which is quite dangerous for her. When it re-activates, she has to take anti-virals. I wonder if anti-virals would help people with EB reactivation or flares??

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 11:45 pm

Whoa, if you are interested in this topic, google "Epstein Barr and colitis." Could this be our smoking gun?!?

Should our colonoscopy biopsies also be tested for Epstein Barr?? Should our treatment/management efforts focus more on suppressing viral activity (i.e. not taking immunosupressive meds?) My head is spinning!!

From one article:

The presence of EBV in the gastrointestinal tract of IBD patients has been documented by others. Takeda et al. reported a patient with persistently active ulcerative colitis; EBV was found in biopsy specimens from the rectum and terminal ileum in both epithelial cells and lymphocytes. Although the presence of primary EBV infection could not be established, they noted elevated anti-EBV viral capsid antigen IgG and EBV nuclear antigen antibodies. In contrast to our patient, their patient's symptoms did not correlate with other clinical manifestations of EBV infection and abated only upon the introduction of aggressive treatment for IBD (11).

The presence of EBV in gastrointestinal tissue from IBD patients, as determined by PCR (1, 12), immunohistochemistry, or in situ hybridization, has also been reported in several small studies in which colon biopsies were examined retrospectively (5, 10, 13). Unfortunately, no clinical correlates were provided in these studies. In one study, in which the presence of EBV in colonic specimens from patients with and without IBD was established by in situ hybridization, EBV RNA was detected in B (CD20+) lymphocytes in sites of IBD involvement (13). In another report, EBV RNA was present in lymphocytes in colonic biopsy samples of 7 of 17 patients (41%) with active ulcerative colitis (1). Serum PCR for EBV DNA, which was positive in these patients, was negative in controls, including patients with Crohn's disease and other types of colitis. In contrast to these findings, Gehlert et al. documented EBV-infected lymphocytes in biopsy specimens with or without active inflammation in patients with either ulcerative colitis or Crohn's disease (5). Speiker and Herbst used EBER (1 and 2) and BZLF1 as markers of latent or active EBV infection, respectively. EBER positivity was documented in 57 of 116 (49%) specimens from patients with IBD and was more frequent and prominent in specimens from patients with ulcerative colitis than from those with Crohn's disease. BZLF positivity was documented in only two of the specimens, both from patients with ulcerative colitis. The authors suggested that the presence of latent EBV markers may signify locally impaired antiviral immunity, which can affect the nature of the inflammatory reaction, particularly in ulcerative colitis (10).

http://jcm.asm.org/content/47/5/1588.full

Zizzle · Post by **Zizzle** » Wed Jun 13, 2012 11:53 pm

Here's a discussion that pointed me back to our board. One of our members tested positive for EBV and was also experiencing low body temp (like me!) with normal thyroid and hormone tests!!

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5917

And here's a MUST READ article outlining how EBV causes autoimmune disease is genetically susceptible people. It's amazing to me that it explains how it can cause organ-specific autoimmunity (MC), but also generalized autoimmunity (many of those crazy symptoms we all have that never turn into much, but are not normal nonetheless).

http://espace.library.uq.edu.au/eserv.p ... ebv_04.pdf

Zizzle · Post by **Zizzle** » Thu Jun 14, 2012 12:10 am

On a lighter note, imagine attributing your entire health status and ultimate demise to that loser in middle school or high school that you kissed?! I should hunt Mike Campbell down and #$%##!!!**!!#!

It makes other STDs seem like a walk in the park! Well, except for that drug-resistant gonorrhea taking hold across the globe...

Zizzle · Post by **Zizzle** » Thu Jun 14, 2012 12:51 am

Hot off the presses!!

http://www2.medicine.wisc.edu/home/file ... Kenney.pdf

Conclusion: EBV-infected lymphocytes are frequently present in inflamed gastric and colonic mucosa. Active viral replication in some lesions raises the possibility of virus-related perpetuation of gastrointestinal inflammation.

This clearly supports the idea that our colonic biopsies should be tested for EBV infection in the lymphocytes. At a minimum, it may help us and our doctors understand the underlying cause of our MC. I'm not sure it makes a case for blood screening of EBV antibody titers, but I sure wonder if they would be elevated during unexplained flares.

Post by **tex** » Thu Jun 14, 2012 7:35 am

Geez Zizzle. And I thought that I was finished with the manuscript for the book, and all I needed to do was to finish the final editing and design. Apparently I need to add at least a few more paragraphs. I have long suspected a viral involvement with MC because viruses are so good at altering and triggering genes. I had forgotten all about EBV. I don't believe that it's a major cause of IBDs, but it could certainly be another "pre-disposing" ingredient in the sequence of events that leads to the development of IBDs and other autoimmune diseases.

Thanks,
Tex

MBombardier · Post by **MBombardier** » Thu Jun 14, 2012 7:44 am

Okay, when I go in for a labs in a month or so, I am going have my PCP ask for the EBV titer, too. I agree with Suze, I think I would know if I had had mono, but I was sick a lot in high school and as a freshman in college, and in and out of hospitals fairly often for several months. One of the hospitalizations was for a severe strep infection that came back every few weeks for about three months after that.

When i was in my 20's, I had this weird thing that would attack whenever I was under stress. I was a single mom going to college, and every semester it was a race to see whether I would complete my last final before being felled with horrible fatigue, body aches, and a fever. I was hospitalized for it once, and the diagnosis was "fever of an unknown origin." I was considered a bio hazard, and everyone gowned up in bio hazard stuff to come in the room. No one else close to me ever had it, including my daughter.

Man, the stuff this is making me remember...

Zizzle · Post by **Zizzle** » Thu Jun 14, 2012 8:37 am

Marliss,

One of the hospitalizations was for a severe strep infection that came back every few weeks for about three months after that.

I would bet serious money that you were dealing with EBV during that time. I was diagnosed more than a month after the onset of symptoms becuase I kept testing positive for strep throat. But after each round of antibiotics, the "strep throat" wouldn't go away, and they finally looked for mono. From what I read last night, many people are infected with EBV and are not aware they had it. Others get so sick with transient fatigue and fevers as you mentioned, and say they were never the same after that.

I'm not saying everyone's MC is caused by EBV. I was first looking for biological plausibility. After that, if the shoe fits...well, you know. Perhaps EBV infection is a necessary precursor, along with genetic susceptibility. It certainly explains why some people seem to develop MC after stressful events, pregnancy and hormonal changes...because your body is worn out and vulnerable, weakening your defenses against the EBV, which probably starts to replicate more when your body is too weak to can't fight back. It may also explain why people usually flare after discontinuing immune suppressants. It certainly points to a possible new direction in treatment. Antivirals/antiretrovirals during times when EBV antibody/viral levels are high?

I can say with almost total certainty that ALL my blood tests and symptoms can be explained by EBV. The ANA, RF, and ASMA antibodies, the undifferentiated autoimmunity, the rash that isn't always sun sensitive, the dermographism and possibly the MCAD-like symptoms. Even the weak joints/collagen, the mitral valve prolapse (first diagnosed 4 years after the mono), the blood pressure and transient POTS symptoms.

What doesn't compute yet is why I'm not one of the millions of people with Chronic Fatigue Syndrome. Maybe my healthy lifestyle growing up actually did some good? Or maybe CFS will come during the perimenopausal period?

I feel a sense of calm all of the sudden, like my puzzle may be almost complete...