Mononucleosis Survey

[tex]

As suggested by Gloria, here is a poll on mononucleosis.

Tex

[Zizzle]

Here is a MUST READ article on the topic. I think I've found my smoking gun!!

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

[Joefnh]

I answered yes, but to be specific I never had 'mono' but did in 1995 have the full blown EBV infection amounting to the same thing. The Epstein Barr Virus (EBV) is the largest most complex virus structure currently known and has been implicated in many diseases as the enabling factor.

Most in the teenage years get mononucleosis or 'mono' which causes a sore throat with a lot of swelling coupled with fatigue and fever. Mono is considered small reaction to EBV and does provide for lifetime antibodies. This is a bit like getting chicken pox when your young as opposed to a more aggressive version with potentially more serious side effects when older.

I attribute the full blown EBV infection for the health issues I have today. In 1995 I had been for the previous few years traveling internationally for quite a while and had just traveled to China and Hong Kong. After retuning from that trip I got as sick as one could possibly imagine, ending up in the hospital for just under 6 months with full blown EBV infection as the diagnosis. I lost 65 pounds and had some close calls during that time...no fun

Prior to that I was a avid runner, skier, hiker with pretty much zero health problems. Looking back, within 6 months of that time my GI symptoms had started, but I had no idea what that was all about. I could never get my energy fully back and I would say I have only been able to actually 'recover' about 60% of my previous self. That was definitely the turning point in my life healthwise, pretty much like a light switch.

[Zizzle]

WOW JOE!! You are the poster boy for EBV causing autoimmune and GI diseases!!! Now the question is, does EBV simply alter genes and serve as a trigger, or it is an active infection disguising itself as AI disease? From the case reports I'm reading, in nearly all "autoimmune" attacks, one can find EBV lurking in the leukocytes at the site of inflammation (if you look hard enough...which no one does). That's pretty convincing evidence that EBV is still working its magic -- it's not dormant after triggering some genes, it's active in the disease process!!!

So the next question is, how can this be treated to restore health? Are antivirals the answer? Are there supplements or herbs with anti-viral properties that we should be taking? Mega-doses of garlic?

[Joefnh]

Zizzle that's a title I would gladly give up and everyday wish I could...

While in the hospital during that time, I had every test you could imagine and given all of my international travel and exposure, I had 3 different infectious disease types testing for everything under the sun. The only thing that came up was EBV, apparently my titre levels were at the highest reading for that blood test, so it was pretty conclusive that was the agent responsible.

[Zizzle]

Joe,
I hear you. I think I may be the postergirl for EBV causing generalized/undifferentiated autoimmunity and connective tissue disease. On the one hand, it may feel good to finally know why this is all happening. On the other hand, it seems we are powerless to do anything about it! That's probably why our docs never mention it, because they know there is nothing to be done about it.

[kayare]

I, too, have had serious viral episodes. Once when I was nine, I was sick for a week. I don't remember much because I was so sick except that I was taken to specialists at the hospital, and no cause was ever found. When I was 21 and finishing college, I tested positive for strep for months. I had a sore throat and other symptoms that were passed off as exhaustion from a full college/work schedule. Could this have been EBV? My third significant illness was in 2005, I believe. I thought I had a particularly awful case of the flu and didn't get out of bed for a full week. I wasn't tested for any particular illness. I told the doctor that was the sickest I had ever been. I have had GI problems throughout my life, but my worst D started after that "flu." I've always thought that I've never been the same. Now, I wonder about each of these illnesses!

[Mim18]

I am finding this discussion very interesting. My EBV was elevated in March of 2003. In fact, the doctor said my EBV levels were the highest she had ever seen. I was so sick that I was out of work for over a month. When I did return to work it was only for 4 hours a day for quite a few weeks. I was too run down to handle any more hours. I know that is the same year when the horrible D began, because lots of other tests were done on stool specimens in 2003, and that was when my first colonoscopy was ordered. When I finally had that done in 2004 it showed CC. Just for the record, prior to that I had been in perfect health. Could there be a link to EBV?

[/quote]

[Zizzle]

Mim and Kayare,
WOW!!

When I was 21 and finishing college, I tested positive for strep for months. I had a sore throat and other symptoms that were passed off as exhaustion from a full college/work schedule. Could this have been EBV?

That is what happened to me and many others. You test positive for strep throat over and over again, and doctors fail to look for EBV/mono. In my case, they finally did. This is why so many people don't realize they had it. Like chicken pox and other herpes family infections, the symptoms are milder when you younger. Also, they have a tendency to reactivate when you are older (ie. shingles).

One of my best friends is dealing with reactivations of EBV and Cytomegalovirus (she only remembers having EBV in her 20s). In the last year, these reactivations have led to severe gluten intolerance, hiashimoto's thyroiditis, Sjogren's Syndrome (severe dry eye), chronic fatigue, and deep pains in her lower back and hips. She also has all sorts of GI trouble, being diagnosed with diverticulitis so far. I sure hope it doesn't become MC!!

[Deanna in CO]

Ok, now you've got me wondering, Zizzle! When I was 12, I had what the doctor ended up calling "subclinical rheumatic fever." I had significant joint pains with no fever, with an elevated antistrep titre. I ended up having to have penicillin shots every day for 10 days. Later, my sister had Sydenham's course (once known as St. Vitus' Dance), caused by strep in the nervous system, and my brother also had subclinical rheumatic fever.

Some years after all this, my parents had a friend who was a cardiologist who was investigating some sort of strep sensitivity syndrome. He found that there was a group of symptoms that went together, including a sensitivity to strep (especially a tendency to more serious strep issues like rheumatic fever) and to other drugs (including caffeine), as well as a very minor heart murmur/mitral valve prolapse, and I believe some other issues as well. There was definitely a genetic link in the syndrome he studied.

I haven't heard any more about it since then, but all this has made me wonder what relationship strep has to what we are dealing with. My sister went on to develop chronic fatigue syndrome, and her daughter definitely has often sensitivity. I, in the meantime, developed LC; my mom has no digestive issues but has a serious D3 deficiency and RA issues that went away when she started taking the D3. It does make me curious about how strep might be linked. Hmm - sure wish the medical establishment would take this seriously and do some studies on it.

Deanna

[Robbie]

I was so ill in October of 1991 that I could not get out of bed for a month. I did not see a doctor. The pain that settled in would not leave so I saw a doctor a year later, resulting in a Fibromyalgia diagnosis. I believe 1991 was possibly a relapse of the virus I was diagnosed with in about 1979. I could not get out of bed for about a month that time, too. The doctor who had me tested said I had a virus that I could not pronounce. When I asked him what it was he said I would never be able to remember the name of the virus but I should always remember that it was just like mono, but not mono. He also said I would feel very bad for a long time, but eventually I would get well. I never really got well and had to quit my job, but finally got a little better in about 1985. I was still sick, but managed to live a fairly normal life until 1991. I've been sick ever since (fatigue, migraines, body pain and chronic D, mostly). I sure wish I'd have had him write down the name of what I had, or at least gotten a copy of the test results (I did not do that then, but soon after I started asking for copies of my records). I have often wondered if it was Cytomegalovirus, since it's quite a mouthful - just like the name of the virus I was diagnosed with. Guess I will never know. Regardless, other than a head injury in 1976, I think that virus in 1979 was the very beginning of my very poor health. However, I had chronic C from childhood, so I've had lifelong problems in that department. The chronic D was triggered by a scope in 2000. Getting E. coli in 2006 sort of pushed my health right over a cliff. I've been fairly worthless ever since :-(

[tex]

Hi Robbie,

Wow! You've had quite a time of it, to say the least. Do you happen to remember which cleanout solution you used to prep for the scope? Was it Fleet Phospho-soda, or Visicol or OsmoPrep? Some of those sodium phosphate products have been shown to cause kidney damage, and intestinal inflammation, and possibly other problems.

Tex

[Robbie]

Tex, I think it was the Fleet Phospo-soda in 2000 - the scope that wrecked me by flipping me from chronic C to chronic D. That's what I recall, anyway, but I can't be sure. I used the Miralax cleanout in 2010 - a breeze in comparison. I did not suffer after the last one like I did the first time. I think a lot of the problems in 2000 were caused by the gas, more than anything, but I'm sure the cleanout helped make things worse. The bloating afterwards was so miserable! I could not pass gas for weeks and could not stop burping (my doctor called it farting out of my mouth). It got so bad that I got an earache, which my ENT doctor blamed on GERD induced by the scope (I did not have GERD before).

My local doctor, who is not a GI doctor but studied the field for 12 years, said she was sure that the ulceration seen in my colon during the 2010 scope was not Ulcerative Colitis as the scope doctor had diagnosed, but was caused from the cleanout. She assured me that sort of thing happens frequently from the cleanout. She came up with LC based on the pathology. The pathologist called it "mild chronic colitis". However, I've seen pictures online that look just like mine and they are labeled UC. Maybe it's not uncommon for people to get an incorrect UC diagnosis from the damage caused from the procedure - cleanout, gas, or other factors possibly. I don't know.

Who knows what really caused my problems. All I've ever known for sure is I was one way before I got my first scope and a totally different way after. As far as I'm concerned the 2000 scope had a significantly negative impact on my health and my lifestyle. I had no plans to ever be scoped again in my life. It was passing blood that made me do it again

[tex]

Robbie,

I had a similar experience. My first colonoscopy was in 2000, also, and I couldn't get rid of the gas, either. All I managed to do in the recovery room was vomit, because of the backpressure. I finally got rid of it 3 or 4 days later.

I have a hunch your doctor is right. I've seen some studies on those chemicals that reach similar conclusions.

I hear you. Passing blood tends to grab our attention.

Tex

[Zizzle]

More evidence that Epstein Barr can precede autoimmune disease, and cause T-Lymphocyte inflammation virtually anywhere in the body...in this case, the lungs.

http://7thspace.com/headlines/416496/mu ... eport.html