What induced your ME?

[msf]

You didn´t offend me. I was just debating the points you made, and then I remembered that we seemed to have strayed off-topic (if you want a good Lyme discussion, there are tons on the Lyme and co-infections forum).

 

[mariovitali]

@Alexandra90


From what i have seen so far i believe that a very common pattern is after taking medication and in general something that stresses the Liver.

A Liver stressor can either be medication (Methotrexate, Cirpofloxacin, Finasteride, Accutane) a virus such as EBV and even prolonged stress.

Medication use may be hidden in several cases. For example i had a person saying to me that she got CFS after a surgery...but before, during and after surgeries we do get loads of medication!

Please also note that having normal Liver tests does not rule out Liver disease. The gold standard to rule out any Liver disease is needle biopsy and the second best a test called Liver elastography (aka Fibroscan)

http://forums.phoenixrising.me/inde...-17-research-update.49749/page-17#post-857103


Here is my Research for more info but "a Liver stressor" in general could be something to consider.


http://algogenomics.blogspot.com/2017/05/results-from-classification-analysis.html

 

[TreePerson]

After that first one I had many days, for a couple of years, where I would feel like I had the flu, but only for a few hours at a time. After a certain point these episodes (t-cell activation?) stopped. I also stopped getting colds (last was 2007) and flus (2004).

Yes I also had a very regular flu like episodes for the first few years - it was fairly constant. Now I very rarely get them. I also don't get colds. This seems to fit with the observed changes in cytokines after three years. These days the flu like feelings only come on when I try any kind of treatment. They tend to persist and get worse with increasing weakness until I give up whatever it is I'm trying. I can never decide if it's a good or a bad thing. I think it all hinges on whether what I have is autoimmune or persistent viral.

 

[Wufflit]

For me it was a traumatic event when I was 11, I woke up the next day with full retrograde amnesia, it was scary at the time, but it only lasted about 30 minutes, I thought nothing of it afterwards. Then two weeks later i came down with flu and was just about bedridden for six months, the next two years i had the retro amnesia every morning for roughly 30 minutes. along with all the other usual symptoms. I was eventually diagnosed with ME and SAD (seasonal affective disorder).

I think i may have had some underlying condition before then. i can vaguely remember being very tired or ill sometimes when i was younger and having food intolerances that made me sick often.

 

[unto]

Probably a new virus ...... because several close people (family / relatives, friends, colleagues) contracted
ME from the undersigned ....... although unfortunately I can not take the tests I am convinced of the contagiousness of ME / cfs
The "normal" stress has never made anyone ill ..... impossibly then, that in the last decades has produced this ME pandemic

 

[Alexandra90]

Probably a new virus ...... because several close people (family / relatives, friends, colleagues) contracted
ME from the undersigned ....... although unfortunately I can not take the tests I am convinced of the contagiousness of ME / cfs
The "normal" stress has never made anyone ill ..... impossibly then, that in the last decades has produced this ME pandemic

What do you mean with stress and ME epidemic?

 

[Londinium]

Very sudden onset on a trip to India. One minute I was fine and then suddenly it was as if the floor shifted from under my feet with severe orthostatic intolerance - my colleague still remembers how I went from walking/talking normally to suddenly clutching the wall as I thought I would fall over. I thought it felt like my blood pressure had suddenly plummeted. Also developed a weird headache at the back of my head (occipital lymph node perhaps?) which still persists intermittently today. Within hours I had severe fatigue and some joint pain. Bedbound for 2-3 weeks, housebound for 4-5 months. Recovered up to 3,000 steps/day. (Housebound again the past two months due to a relapse thanks to my idiotic decision to push through and walk a mile)

We never found out what the initial infection was, though my liver enzyme (ALT) was initially high enough that my GP called me back and considered having me packed off to hospital. One doctor thinks it was Giardia (because I improved on an empirical course of Metronidazole) and two others think it was an unknown pathogen that caused a reactivation of EBV. Subsequent to diagnosis I found out that four (out of six) of my relatives on my maternal side have autoimmune conditions.

Which is a really long way of saying 'I don't know what causes my ME'...

 

[Hell...Hath...No...Fury..]

EBV but was still able to work through sheer will power then Tetanus jab 6 months later as I was planning on travelling around Africa, this caused my actual crash into bedridden land

 

[MeSci]

EBV but was still able to work through sheer will power then Tetanus jab 6 months later as I was planning on travelling around Africa, this caused my actual crash into bedridden land

That's at least two of us with Tetanus jabs 'coinciding' with worsening, as described in my blog here (with photos): http://forums.phoenixrising.me/inde...-and-results-of-1995-step-exercise-test.1650/

I only became ill a few months earlier due to a traumatic event.

 

[Hell...Hath...No...Fury..]

That's at least two of us with Tetanus jabs 'coinciding' with worsening, as described in my blog here (with photos): http://forums.phoenixrising.me/inde...-and-results-of-1995-step-exercise-test.1650/

I only became ill a few months earlier due to a traumatic event.

Yeah, there's definitely no doubt about it. My injection site started reacting almost immediately and was very sore for days. A week or so later, I was walking down the road and lost control of my legs, struggling to point my feet forwards and lift them.
That was the first proper 'ohhhhh crap' moment.
A week after that, bedridden. Then more or less paralysed for a couple of years but with the added joy of agony.

Tetanus isn't mentioned as much as other triggers but there are a few of us out there

 

[unto]

What do you mean with stress and ME epidemic?

I meant to say that stress does not cause ME, it can only worsen it (once sick). The etiology I think is viral ...; Now, after 60 years, has become a pandemic and the sick (more or less conscientious of it) Could be about 5% of the population

 

[Little Bluestem]

A "nasty flu".

 

[Manganus]

The borrelia bacteria is a spirochete, and spirochetes release endotoxins when they die off. This triggers an immune reaction involving fever, hypotension, etc, and is extremely well documented in the treatment of syphilis, which is also caused be a spirochete.

I'm sure you know your stuff. But do you maybe have a good link that describes this endotoxin-trigged immune reaction, please?

 

[Valentijn]

I'm sure you know your stuff. But do you maybe have a good link that describes this endotoxin-trigged immune reaction, please?

It's called a Jarisch-Herxheimer reaction. It's on wikipedia, and I'm sure there's other good sources as well.

 

[Manganus]

No one knows for sure what causes ME. One of the most prevalent theories is nicely described on OMF's site:

"The disease can be triggered by an infection or series of infections, surgery, another illness, an accident, or any other physical or emotional stressor. It may come on gradually or suddenly. Commonly, people with the disease say they feel they caught a flu, but it never went away. Some report the symptoms starting one day without any apparent trigger."

It's impossible for a person to know what started their ME because it's impossible to separate cause from coincidence.

Bravo!
You are right!

What we experience as an "onset" maybe was just an early relapse.

 

[BFitz89]

I worked overnights and watched my infant daughter during the day for her first 18 months on this rock. Due to that I was only sleeping 2 to 4 hours a day on the days her mom worked. So extreme stress on my body.

Last summer I went through a severe depression after a break up with the mother of my child. I believe the emotional stress I was under led to a reactivation of EBV or I happened to get mono from the one time I went home with another girl after the breakup. I actually got over mono quickly without taking time off of work or slowing down my life aka staying up late, playing music and having drinks. The doctors didn't implore to me how important it is to get real rest when sick with mono so I just carried on.

Two months after my mono recovery I was hit with the 24 hour flu bug and then a chest cold. Took a three day round of amoxicillin to combat the chest cold and voila I now have CFS. One day after work my legs felt very sore in my hamstrings, light started looking weird like mono again and I soon developed insomnia and intense brain fog. Added a few other symptoms since that time. Improved on a few, especially the insomnia.

Currently I'm battling my mental health more than anything. My ex and I were working through things when I had my crash 6 months ago and she broke it off rather quickly and harshly when she realized this wasn't just a second bout with mono. Going from being a fit 28 year old, always playing with my daughter and playing hockey twice a week and going to the gym three days a week, to only being able to get through work and then nothing else... It really sucks. I'm heartbroken again and dealing with this all by myself. I'm mild right now, but even that is no walk in the park.

 

[wastwater]

EBV and a genetic glitch(unknown)

 

[stridor]

Unsafe removal of mercury amalgam fillings.

 

[Rvanson]

Eating with friends at a restaurant back in 1996. Became ill while sleeping 5 hours later.
Ran to bathroom with everything coming out
both ends. Lost 30 pounds in the first month.
Couldnt work, so I got fired. Bedbound for
weeks. Finally made it in to see my doctor.
All tests came back normal. After a year I
recovered enough to work, but crashed at
home on weekends. Girlfriend ditched me
too. Cant say as I blamed her. It must have
been something in the food that caused my
ME. I had teriaki chicken with vegetables and
a cup of coffee for dinner, if that makes a difference. Was a normie before this occured.

 

[ScottTriGuy]

Don't know.

Have had 2 full remissions, so 3 opportunities to discern a trigger pattern - if there is one, its not obvious to me.

I can say definitively that a mild head cold precipitated a slide from mild to severe (am back to mild/moderate now).