What induced your ME?

[pcmenten]

I've read several accounts of people have had 'flu' prior to the onset of CFS symptoms. I, too, thought I had a flu when I contracted HSV1 - flu-like symptoms and a sore throat that would not quit. By coincidence, I had been tested for HSV1 and HSV2 just prior to coming down with these long-lasting flu symptoms. A year later I was restested for HSV1 and HSV2 and discover that both HSV1 IgM and IgG antibodies were well above reference - I had contracted HSV1.

So I wonder if people experiencing 'flu' before the onset of CFS is actually a situation where they have contracted EBV, CMV, HHV6 or some other viral or retroviral infection.

 

[eric_gladiator]

The first time that I fell coincident taking an antidepressant, the second after years also coincided with another antidepressant, by chance? I do not think so

 

[sissypop]

Lupron injections.

 

[belize44]

Hepatitis and flu shots

 

[Snow Leopard]

In my case it was the oral Polio vaccine and/or the Diptheria/Tetanus vaccine. First symptom was difficulty swallowing, glands up after the immunisations, then acute flaccid paralysis of my lower legs (just a few weeks after the immunisations).

I regained the ability to walk, but the rest of the symptoms remain.

Unsure of whether it was due to the live Polio or the DT vaccine:

http://pediatrics.aappublications.org/content/135/Supplement_1/S16.2
http://www.neurology-asia.org/articles/neuroasia-2014-19(2)-149.pdf

I never had EBV or any of the other infectious suspects when I first became ill.

 

[rosie26]

I think what set the whole thing in motion at the very beginning, for me, was a bacterial infection that changed the microbiome. I was never the same again after that infection, 20 years old, 1984. It was a 'reset' different microbiota makeup. Also left with tenderness, pressure pain.

Then years later, a cold-like flu triggered mild ME onset symptoms, extreme dizziness two days before cold appeared. The cognitive ME symptoms was severe though, even in mild years.

I kept deteriorating each year and then I caught a very nasty flu and this brought on full-blown severe onset.

 

[Dechi]

Infection by an enterovirus. Probably twice.

 

[Vickytoria1988]

EBV in 2005. Then I did a very intense erasmus in 2009. My life changed from this date. It got really really bad.

 

[AlwaysTired]

EBV/mono, with possible contribution from CMV. Had a stomach flu (type illness) the week before onset. Apparently I had EBV in my system for a while. Don't know if I had an enterovirus because I didn't get tested for it (didn't know until more than a year in that they can trigger CFS), but EBV and mono antibodies were very high early on in the illness.

Most recent blood test result for EBV= "no virus detected" but I am still fighting this thing...

 

[Chrisb]

Who knows? I was very surprised to read recently that in the term "post viral fatigue syndrome" the "post viral " is not intended, at least by some, to indicate causation or aetiology, but is merely descriptive of the fact that the patient suffered from a viral illness and later suffered from symptoms constituting a syndrome.

It seems likely that there is not even consistency in this aspect of the matter.

 

[Tammy]

Most recent blood test result for EBV= "no virus detected" but I am still fighting this thing...

All this means is simply that the virus is not in the bloodstream at this point in time............but it can be in your organs and even your central nervous system and not be detected.

 

[hedgehog]

Gardasil HPV vaccine, despite the recent study. I have no other explanation for now.

 

[BFitz89]

EBV/mono, with possible contribution from CMV. Had a stomach flu (type illness) the week before onset. Apparently I had EBV in my system for a while. Don't know if I had an enterovirus because I didn't get tested for it (didn't know until more than a year in that they can trigger CFS), but EBV and mono antibodies were very high early on in the illness.

Most recent blood test result for EBV= "no virus detected" but I am still fighting this thing...

Had mono in November and was over it by December. Fell ill again in middle January with what I thought was a mono relapse, but I had normal EBV antibodies. Been sick since.

 

[AlwaysTired]

Had mono in November and was over it by December. Fell ill again in middle January with what I thought was a mono relapse, but I had normal EBV antibodies. Been sick since.

If you've only had CFS/ME since January and have known it since then too then you are in a better position to get better than most people. At least from what I have read most people have this for years before finding out what it is, and therefore make choices that lead to setbacks, or further decline. I didn't know its what I had until several months after the fact, and still was dragging myself to work despite hardly being able to function (I thought whatever I had was short term and therefore didn't want to risk losing my job...), trying to keep up with being as physically active as I was before etc... I would have done things differently if I knew sooner, and was able to research sooner (which I couldn't do early on because it got so severe so quickly that even reading and talking were too much for me to handle)

 

[BFitz89]

If you've only had CFS/ME since January and have known it since then too then you are in a better position to get better than most people. At least from what I have read most people have this for years before finding out what it is, and therefore make choices that lead to setbacks, or further decline. I didn't know its what I had until several months after the fact, and still was dragging myself to work despite hardly being able to function (I thought whatever I had was short term and therefore didn't want to risk losing my job...), trying to keep up with being as physically active as I was before etc... I would have done things differently if I knew sooner, and was able to research sooner (which I couldn't do early on because it got so severe so quickly that even reading and talking were too much for me to handle)

I'm stuck working as I'm in immense credit card debt. I fell ill at a very bad time financially. FML.

 

[AlwaysTired]

I'm stuck working as I'm in immense credit card debt. I fell ill at a very bad time financially. FML.

I had a large amount of student loan debt when I got ill, which have a reputation for being impossible to get dismissed. Due to being ill I had all my debt dismissed (they do monitor you for 3 years to make sure you are still disabled)

Although I've never had credit card debt, I know it can be reduced (cc companies are willing to negotiate because unlike the govt. they can't garnish your wages, take away your house, car etc and they'd rather at least get something than nothing at all) and even dismissed. Being unable to work at the least should give you extra leverage and maybe, similar to student loan debt there are circumstances that qualify one for total dismissal, such as (projected) permanent disability (since this can be a lifelong illness and it's not possible to predict if/when will get well again it is reasonable to claim it at this point)

 

[Rvanson]

I'm stuck working as I'm in immense credit card debt. I fell ill at a very bad time financially. FML.

I am sorry to hear this. Its possible to have an
upturn in your health, but no way to know. I was lucky and had a partial remission that allowed me to work for another 17 years, but
the ME came back in 2014, after I was overworking myself, or at least that's what
likely caused it. Too much stress is very bad
for people with ME, and this world is full of stressed out people who stress everyone else
out. I should have looked for easier work, but
I liked my former profession too much to change. Big mistake.

 

[PatJ]

Those of you who think EBV might be responsible for your condition may be interested in this info::

From zzz on Phoenix Rising:
The best documented, most scientific alternative EBV treatment (which should really be mainstream) is the one Dr. Jay Goldstein developed for treating his mononucleosis patients in 1979. He used Tagamet (an H(2) blocker), but once Zantac came out, he switched to that, because it had far fewer side effects. For 90% of his mono patients, Zantac 150 twice a day got rid of all mono symptoms in a day or two. Over the years, this treatment was done on well over a hundred patients. This treatment was also very helpful for 20% of his CFS patients.

There are papers published on this, but no clinical studies. Why? Here's Dr. Goldstein's explanation:

As a probably predictable aside, I should mention no one evinced the slightest curiosity about how these results [the rapid termination of LSD effects using niacin] were accomplished, and this "antidote" remains little known thirty years later, much like my discovery in 1979 that cimetidine made acute infectious mononucleosis in teenagers or adults (and varicella, too) resolve in one or two days. I am getting tired of whining about it, but hardly anyone is aware of this treatment, even now [in 2004, 25 years after its discovery]. Although I reported a 90 percent cure rate in over 100 patients (rather high for a placebo response), the results were "anecdotal". Naturally, I was unable to get a grant to perform a double-blind, placebo-controlled experiment. "But Tagamet (and later Zantac) is for ulcers," the reviewers would write. The fact that the chairman of the department of infectious diseases at the local medical school was my coinvestigator on the grant proposal did not grease the wheel at all.

And the drug companies wouldn't pay for such a study - the antivirals are so much more profitable than Zantac.

 

[boolybooly]

I had prior EBV (1982) but recovered. Later in 1986 when I got HSV2 it became recurrent and all my energy vanished and I felt like a zombie, so I guess it was induced by that. The same virus is still recurrent 30 years later and I still have CFIDS. But I cant help thinking that latent EBV may have played a part behind the scenes and the two viruses somehow synergised. I certainly get better traction with doctors if I mention the prior EBV.

 

[Texas83]

I was very healthy, but within a period of weeks, I got a severe case of food poisoning, followed by a severe case of mono. At this time I also had a terrible reaction to a birth control pill and a flu shot while sick. I think that the birth control pill weakened my immune system, making the food poisoning and mono more difficult on my body.