POLL: what triggered your CFS/ME?

[picante]

There used to be an action group for those who developed ME after taking Septrin. I think it was then withdrawn and re-marketed in the US under a different name,

It seems it has a lot of names, and is back on the market in the UK:
https://en.wikipedia.org/wiki/Trimethoprim/sulfamethoxazole#Trade_names

 

[picante]

I had a severe case of infectious mono at age 35. I was not aware of anyone around me who could have transmitted it to me, so have been assuming that it was reactivation of latent EBV. For this to happen, the immune system must be messed up to begin with, right?

So EBV would be the trigger, but not the cause. I can think of multiple toxic exposures I had growing up, including perchlorate in our drinking water and mercury in my teeth, plus the usual fluoridated water. But I have wondered about the polio vaccine, which was contaminated with SV40 from 1955-1963, when I would have gotten it.

Are there really no epidemiological studies on this virus? It has to be getting passed from one generation to the next, ¿no?

 

[Gingergrrl]

Also in the 80s the antibiotic Septrin also triggered a number of cases of apparent ME.

@Countrygirl I did not know that an antibiotic had officially been linked to ME or an ME-like illness. The beginning of my illness, or the literal ground zero of me getting ill, was what the doctors called a neurotoxic reaction to the antibiotic, Levaquin. I had many triggers after this (surgery, mono/EBV, severe mold exposure etc) and it's so hard to know which role each factor played. I have not heard of "Septrin" before but they have different names in each country.

Dr John Chia's clinical data shows various apparent causes of ME/CFS, and the percentage of ME/CFS patients whose condition was triggered by each cause:

Chia's Data:
———————————————————————————————————————————————
Probable ME/CFS Cause · · · · · · · Patients
———————————————————————————————————————————————
Chlamydia pneumoniae· · · · · · · · 9.0%
Epstein-Barr virus· · · · · · · · · 3.0%
Cytomegalovirus · · · · · · · · · · 1.5%
Recurrent VZV · · · · · · · · · · · 3.0%
Recurrent HHV6-like disease · · · · 0.5%
Parvovirus B19· · · · · · · · · · · 1.5%
Hepatitis C · · · · · · · · · · · · 1.5%
Neurocardiogenic hypotension· · · · 1.0%
Toxic mold exposure · · · · · · · · 1.0%
Postvaccination · · · · · · · · · · 1.5%
Enterovirus infection· · · · · · · 54.5%
Unknown· · · · · · · · · · · · · · 22.0%

@Hip Dr. Chia's data is very interesting and I don't think I have seen this chart before. I will be seeing him for a consult in Feb and am very curious how he conceptualizes my case as I have several of the triggers on his list.

Can you (or anyone) explain what Neurocardiogenic Hypotension means? I highlighted it in red on the chart so you could see it better. Is it a special kind of hypotension? I had not heard of hypotension as a cause of ME versus a symptom or type of dysautonomia.

Was also interesting that Dr. Chia feels that toxic mold contributes to 1% of cases since I also fit in that group.

 

[Countrygirl]

@Countrygirl I did not know that an antibiotic had officially been linked to ME or an ME-like illness. The beginning of my illness, or the literal ground zero of me getting ill, was what the doctors called a neurotoxic reaction to the antibiotic, Levaquin. I had many triggers after this (surgery, mono/EBV, severe mold exposure etc) and it's so hard to know which role each factor played. I have not heard of "Septrin" before but they have different names in each country.

I had omitted to say in my post that a representative of the group contacted me (I had also been taking septrim for bronchiectasis for seven years pre-severe onset) and told me that the group had been awarded large amounts of compensation for developing ME as a result of the antibiotic. I don't recall how much.

 

[digital dog]

Ginger girl, what did the Levaquin do and how long were you affected for?

Lots of factors involved in my health deterioration:
Mercury fillings,
antibiotics,
contraceptions possibly,
drugs (prescription mostly)
morning after pill,
Fever type illness and food poisoning

 

[picante]

@digital dog, have you seen this thread on FQ antibiotics? @Gingergrrl and others describe some of the effects.

 

[Gingergrrl]

Ginger girl, what did the Levaquin do and how long were you affected for?

@digital dog Sorry I never saw this question since you didn't tag or quote me, it didn't give me an alert.

@digital dog, have you seen this thread on FQ antibiotics? @Gingergrrl and others describe some of the effects.

I was going to answer but I think if you read the post that @picante linked, it will answer all of your questions. If not, let me know. Sorry, again!