What induced your ME?

[Valentijn]

Nasty virus.

 

[ukxmrv]

Out of the blue severe viral attack
No stress or other circumstances.

High temperature, swollen glands, sore pus filled throat. Unconscious and delirious for days.

 

[pcmenten]

HSV1

 

[Wishful]

Type IV food sensitivity. That lasted 2.5 years before suddenly being cured by food poisoning. Somewhere along the way it had triggered CFS. Of course, maybe some unknown trigger caused CFS, which caused the type IV sensitivity. Maybe someday we'll have a better understanding of the disease and can better guess what our triggers were.

PatJ said it was a weird one-day flu. My first significant type IV event felt just like a flu coming on, but I felt fine the next morning; I certainly thought that was weird. The next time it felt like a full-blown flue: achey, fever, chills, etc, lasting one day. What you think is a weird flu might not be a viral infection at all. It could be the t-cells reacting the same way to some other trigger.

 

[PatJ]

What you think is a weird flu might not be a viral infection at all. It could be the t-cells reacting the same way to some other trigger.

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).

 

[taniaaust1]

I believe I was already suspectable for several reasons, had a history which could indicate mitochondrial dysfunction in me and other family members, had a history of severe EBV when I was a teen and from my pre ME history it appears I may of already had the Th1/TH2 imbalance which occurs in ME (I never got colds/flu as a child, unnaturally healthy... till I got the EBV).

My ME though was triggered by stress (exams/assignments...= late nights of study so probably sleep deprived too which lowers immune system). I also more Hep B vaccinations then in the norm in that year to (as they wouldnt take so drs kept redoing). It manifested as a virus at first and in very early ME I had the strange symptom of my eyes swelling badly with the virus symptoms.. I looked like a bullfrog (CMV??? I hear that can affect babies eyes, what viral things cause eyes to swell shut?) .

My relapse into ME second time around is more clear. What brought me back into ME from a full remission is getting a "minor" cold virus which was going around. So minor, i just had a little cough and sniffles, never would I suspected I'd crash back into ME from this cold.

 

[Mesurfer]

Stress during college and mono, was what broke the camels back..

 

[valentinelynx]

Sudden onset of "flu-like" illness: profound malaise, weakness, other strange symptoms (eye movement awareness, scotoma in right eye), sudden loss of cardiac fitness (trying to go back to dance class felt like I hadn't exercised in years), gut problems (new onset lactose intolerance), sudden onset multiple environmental allergies (never had any before). Hand stiffness.

The sudden onset was preceded in the previous year by tick bites in an endemic Lyme area (Northern California woodlands) with appropriate rash (not classic bulls-eye but similar) as well as a massive flea infestation. So the actual onset may have been due to late stage Borrelia and/or Bartonella infection emerging into my nervous system.

My immune system may have been weakened by my being on a "dancer's diet" for the prior several months: very low calorie, low fat with weight loss to my high school level (probably 15 lbs below ideal weight). Setting me up to not be able to fight off borrelia/bartonella infection.

All speculation, although there are strong hints of the borrelia and bartonella infections.

 

[Alexandra90]

I'm chocked by how many on this forum that has gotten either sick or worse on antibiotics. There also seems to be common with misdiagnosed lyme disease, and people getting worse with the lyme treatment. I heard some doctors even encourage their patients to accept getting worse, and that it's a sign of the treatment working. That is scary!

 

[daisybell]

Parvovirus was my trigger...

 

[arewenearlythereyet]

extremely busy period at work where I was doing 3 people's jobs for 6 months .....too much adrenalin, caffeine, lack of sleep working in the office until midnight each day etc. When they eventually recruited people I didn't bounce back and was left with less energy. There then followed a series of infections which I recovered from (staph noravirus, cold etc). Each time I recovered my symptoms after got worse until I was unable to walk because of the joint pain., couldn't string a sentence together etc

It was like slowly every month my body started shutting down until it reached a crisis point.

 

[Valentijn]

I'm chocked by how many on this forum that has gotten either sick or worse on antibiotics.

I did better on IV antibiotics.

I heard some doctors even encourage their patients to accept getting worse, and that it's a sign of the treatment working. That is scary!

That's reality, if you bother to learn anything about Lyme. 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.

 

[Alexandra90]

That's reality, if you bother to learn anything about Lyme. 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 sorry if I offended you, but I just wrote my reaction to stories I read here. I read many posts about people getting a inaccurate Lyme disease diagnosis, and getting permanent ill from the treatment. It frightens me that it seems so common to be wrongly diagnosed.

 

[msf]

Umm, if they weren´t already permanently ill, why would they get treatment?

My ME was brought on by Yersinia Enterocolitica - I had the tell-tale symptoms and was still IgA positive for it (and no other pathogens associated with ME) this year.

 

[Thinktank]

A person infected with borrelia will very likely experience a herxheimer reaction when the correct antibiotic is taken, that's a sign that the treatment is working.
The problem is that certain antibiotics are very toxic to the mitochondria, sometimes the toxicity feels like a herxheimer reaction while it isn't. I have been misdiagnosed with lyme disease and wrongly told for three years that my worsening was all due to "herxing". I complained that i felt toxic, like the antibiotics were damaging me but the doc. didn't listen. I have spoken with quite a few people who have all been misdiagnosed with lyme disease and damaged by antibiotics, some more than others. My feeling is that 50% or more of the current patientgroup has been misdiagnosed.

I tried another antibiotic for the gut like 2 months ago and again i felt so toxic. Now that i'm off it for two months i'm starting to feel better physically, i have more energy and i don't feel like i'm dying any longer but i still feel worse than before lyme treatment.

 

[Alexandra90]

Umm, if they weren´t already permanently ill, why would they get treatment?

My ME was brought on by Yersinia Enterocolitica - I had the tell-tale symptoms and was still IgA positive for it (and no other pathogens associated with ME) this year.

But permanent worse from treatment. There is a difference.

 

[Alexandra90]

A person infected with borrelia will very likely experience a herxheimer reaction when the correct antibiotic is taken, that's a sign that the treatment is working.
The problem is that certain antibiotics are very toxic to the mitochondria, sometimes the toxicity feels like a herxheimer reaction while it isn't. I have been misdiagnosed with lyme disease and wrongly told for three years that my worsening was all due to "herxing". I complained that i felt toxic, like the antibiotics were damaging me but the doc. didn't listen. I have spoken with quite a few people who have all been misdiagnosed with lyme disease and damaged by antibiotics, some more than others. My feeling is that 50% or more of the current patientgroup has been misdiagnosed.

I tried another antibiotic for the gut like 2 months ago and again i felt so toxic. Now that i'm off it for two months i'm starting to feel better physically, i have more energy and i don't feel like i'm dying any longer.

Why do you think misdiagnoses are so common?

 

[Thinktank]

Why do you think misdiagnoses are so common?

Unreliable testing methods, in both ways. MIsdiagnosis as false positive and false negative.
False positivity like in the LTT test, or doctors interpreting a slight positive LTT result as chronic lyme disease while it can't distinguish between current and past infection.

Standard ELISA is very unreliable, it's a coin toss really.
Some labs like IGenex may be giving false positive results.

 

[msf]

But permanent worse from treatment. There is a difference.

Well, you didn´t say that. And that is a risk with any treatment for any condition. To prove your point you would need stats, which I see a definite lack of. Otherwise I could just give examples of other treatments (such as Rituximab) that people on this forum have reported to have worsened their condition.

Anyway, I think you (and then the rest of us) have derailed this thread enough for now, so how about we get back to talking about triggers, not treatments?

 

[Alexandra90]

Well, you didn´t say that. And that is a risk with any treatment for any condition. To prove your point you would need stats, which I see a definite lack of. Otherwise I could just give examples of other treatments (such as Rituximab) that people on this forum have reported to have worsened their condition.

Anyway, I think you (and then the rest of us) have derailed this thread enough for now, so how about we get back to talking about triggers, not treatments?

I'm not arguing with you or with any thesis. Quite the opposite I'm open and respectful to what everyone on this forum can contribute in regards to information and experience. So thank you for your point of view. I was just surprised by the information and maybe a bit unclear with my questioning. I'm Swedish so my English is not that great maybe that's why

I do apologize if I offended you with my remarks. It was just an observation from my behalf.