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For those with virally-triggered ME/CFS: what conditions did you have prior to catching your virus?

Discussion in 'General Symptoms' started by Hip, Aug 21, 2013.

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For those with virally-triggered ME/CFS: what conditions did you have prior to catching your virus?

  1. Irritable bowel syndrome

    26.0%
  2. Small intestine bacterial overgrowth

    6.0%
  3. Interstitial cystitis

    8.0%
  4. Overactive bladder

    10.0%
  5. Significant exposure to mold toxins

    14.0%
  6. Significant exposure organophosphate or pyrethroid pesticides

    20.0%
  7. I had none of the above prior to my onset of virally-triggered ME/CFS

    54.0%
Multiple votes are allowed.
  1. Hip

    Hip Senior Member

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    This is a poll about the co-factors that may be playing a co-staring causal role in virally-triggered ME/CFS

    NOTE: if your ME/CFS did not have a viral onset, please do not vote in this poll. This poll focuses only on patients whose ME/CFS appeared to be triggered by a virus they caught.

    Although ME/CFS is often triggered by a respiratory viral infection (such as an enterovirus infection), the same virus usually does not cause ME/CFS in other people. From this fact we can deduce that additional causal co-factors must be in place before such a virus is capable of triggering ME/CFS; and that when such a virus does precipitate ME/CFS in an individual, those additional co-factors were likely already present in that person.

    That is to say, we can surmise that:

    ME/CFS may arise if (a) you catch certain viral infections, and (b) you also have certain additional co-factors already present in your body that enable that virus to precipitate ME/CFS.

    The additional co-factors that I think are most likely playing a co-staring causal role alongside the triggering virus are the following:

    • Already having irritable bowel syndrome prior to catching the triggering virus. 1 2 3
    • Already having small intestine bacterial overgrowth prior to catching the triggering virus. 1 2
    • Already having interstitial cystitis prior to catching the triggering virus. 1 2 3
    • Already having overactive bladder prior to catching the triggering virus. 1
    • Significant exposure to mold toxins prior to or around about the time of catching the triggering virus. 1 2
    • Significant exposure to organophosphate pesticides or pyrethroid pesticides prior to or around about the time of catching the triggering virus. 1

    So in this poll, I would ask people whose ME/CFS was caused from a virus they caught to indicate which of the above health conditions / toxic exposures they had prior to catching their triggering virus.

    All of the above health conditions / toxic exposures have been shown to occur more frequently in ME/CFS patients (see the references given), and this is why I suspect them of being possibly important co-factors in the etiology of virally-triggered ME/CFS.

    I myself had irritable bowel syndrome (IBS) and overactive bladder prior to catching the enterovirus infection that seemed to trigger my ME/CFS. I also had a very significant chronic organophosphate pesticide exposure one year prior to catching my virus. I suspect I developed ME/CFS due to the combined effects of the virus I caught plus these additional co-factors. My hunch, however, is that my enterovirus infection played the major casual role: this is because I had both IBS and overactive bladder for many years without developing ME/CFS; but soon after catching an enterovirus, I began to descend into ME/CFS.


    Notes on responding to the poll

    This is a multi-answer poll, so if like me you had more than one of the above health conditions / toxic exposures prior to catching your ME/CFS-precipitating virus, please select all those that you had.

    Significant exposures to mold toxins. Such significant exposure usually comes from water damaged buildings where large patches of toxic mold have grown on the walls.
    Significant exposure to organophosphate pesticides or pyrethroid pesticides. Such significant exposure can arise from occupational exposure, or from accidental spillage and contamination of the workplace or home.

    In addition to responding to the poll, could you also post a quick comment in this thread, stating the health conditions and toxic exposures you had prior to catching your ME/CFS-precipitating virus. This is because the poll does not display individual responses. You can use these abbreviations:

    IBS = irritable bowel syndrome
    SIBO = small intestine bacterial overgrowth
    IC = interstitial cystitis
    OB = overactive bladder
    MOLD = significant mold toxin exposure
    PEST = significant organophosphate or pyrethroid pesticide exposure
  2. Hip

    Hip Senior Member

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    My prior conditions were: IBS, OB and PEST.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hip

    I had significant exposure to DDT, which is, I believe, a different class of pesticide.

    Sushi
  4. Hip

    Hip Senior Member

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    Hi Sushi. DDT is an organochlorine pesticide. Whereas organophosphate pesticides are linked to ME/CFS and Gulf War illness, I have not seen any research showing that organochlorine pesticides may play a causal role in ME/CFS. Though I just found this: "The CFS group also had significantly higher mean total organochlorine and DDE (a metabolite of DDT) levels than did the controls." But this higher blood organochlorine level may just be due to impaired detoxification in ME/CFS patients.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Also, DDT has not been used in the US (or probably the UK) for a long time so it may not have been studied much in relation to ME/CFS although it is still used in Asia and other areas.

    Sushi
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't know how significant the exposure was, but I did have some exposure to pesticides before (and after) the virus that precipitated my ME/CFS.
  7. Countrygirl

    Countrygirl Senior Member

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    I developed the neurological symptoms of ME after heavy chonic exposure to organochlorines: pentochlorophenol, dieldrin, lindane. These were the cocktail of chemicals that were sprayed on my timber -framed house to protect it from pests. My cousin who handled the timber of my house died as a result of the combined pesticides. It was officially recognised that his death was caused by the organochlorines.

    Prior to the exposure, I had had a severe virus which caused encephalitis and left me with a poor immune system and repeated chest infections and pneumonia.The exposure to the chemicals triggered the onset of neurological symptoms and severe ME.

    .
  8. taniaaust1

    taniaaust1 Senior Member

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    I had unusual exposure to Hep B in the same year or the year before that in which I developed ME. I went throu that vaccination 2 more times then most get due to I didnt produce antibodies to it as I should of, so had to keep getting it redone. I dont know in the end if I finally did manage to produce antibodies to the thing (as I got sick with the ME and dropped out of the health profession I was studying).

    That being said Ive also had other unusual exposures, one in which another developed ME too (both of us 10-11 years later). I used to go horseriding on weekends with her, the land where the horses were kept, had a small area fenced off with tape (not properly fenced off) in which Ive heard was used as a toxic waste dump on this private land for those who poisons in which were illegal to dump at the public dump.

    I also growing up had a lot of exposure to sheep dip, used to get absolutely covered in it every year when helping my father with our sheep. (I think that is one of those poisons).

    To top that off, I also severe florosis as a child (too much fluoride.. it severely damaged some of my teeth, I had to get some capped as they were so discoloured due to the fluoride damage and pitted due to it).

    My house in which I was living in when I got ME, also had chronic mold damage (its so bad that just before I left that house it was recommended that the whole roof was replaced due to where all the water had run in the ceiling in the past). The water used to run down inside the walls and then along bottom of floor some and seek up the cracks of the floor boards and puddle on the floor. The gov housing authorities.. took 3 years to fix the water issues of that house where I was seeing water doing that (but it still left all the damage in the roof).

    My sister who seems to maybe have got CFS from me (I saw CFS as she doesnt currently fit ME diagnoses but she is very sick), she too was living in a mold damaged place when she got sick, she couldnt even use some cupboards in her house due to the mold all throu them. (my other two sisters who havent lived in mold damaged places are healthy). Interestingly too that sick sister too has had Hep B vaccinations (as she worked as a nurse).

    I personally think a combination of things may be coming into play with us, damaging our systems in some way, making us suspectable to ME. I also have a genetic methylation issue, so I suspect something like that also may make one more suspectable (or has potential to make us worst ME cases when we get it???)

    *Note I had severe EBV (mono) many years before I got ME. I think the fact I got severe mono for 10 weeks shows even then there was something wrong with my immune system even thou I recovered from that. (it seemed to be one sided from a child as I didnt catch normal flus or colds). I think our system is damaged in some way, before we catch ME.

    That being said, is ME predictable? I sadly believe and predict both of my two girls will end up with it :( .. why? cause one has Aspergers and EDS so I believe would be predisposed and my other daughter had severe HPV which her body couldnt fight itself like what should happen ..only 1 in 50 000 get what she had with it (she went throu about 16-17 surgeries as her body couldnt fight that virus as a child and she was at risk of it blocking her airways). She is completely well now (thanks to accupuncture and not the medical profession who just did surgery after surgery, they stupidly did not give her antivirals) but there MUST be something very wrong for her to had gone throu that, something now dormant wrong with her immune system!!. I worry about them both as I think if either of them has a major ME trigger and they will get this.

    My warning that ME could of been in my future would of been the severe EBV I had as a teen (showing something not good with my immune system) and a couple of childhood issues (aged 10? and aged around 13? so before EBV) of what seems to be probably mitochondrial malfunction in which my leg muscles weirdly burnt out and suddenly I couldnt walk
  9. Firestormm

    Firestormm Senior Member

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    What of people who are led to believe that a previous e.g. childhood viral infection remains latent in the system until activated by a subsequent virus? You see to be excluding other hypotheses Hip :)
  10. PNR2008

    PNR2008 Senior Member

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    I had an allergic reaction to pantopique, an oil base dye inserted in my spine during a mylogram before back surgery five years before CFS/ME onset. Then I worked as an interior designer barely tolerating wallpaper, carpet and fabric samples covered in chemicals. I also went in buildings in final stages of construction where a hard hat was required and the stores I worked at were over 70 - 100 years old as was the house I lived in.
  11. Hip

    Hip Senior Member

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    Thanks for detailing your history, Countrygirl. It seems your viral infection came before your chronic toxic exposure to organochlorines.

    Can I ask, how long was the time period between your viral infection, and the subsequent exposure to organochlorines?


    I came across this study which found that timber workers who were exposed to the organochlorine pentachlorophenol had more propensity to develop chronic fatigue syndrome, as well as other disorders.
  12. Hip

    Hip Senior Member

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    Sheep dip contains organophosphates, and farmers regularly exposed to sheep dip are more likely to develop chronic fatigue syndrome. See THIS article.

    In the case of organophosphates, people can be far more sensitive to these chemicals if they have the T mutation in rs662 in their PON1 gene. From my 23andme results, I found out that I have a double T mutation, so this makes me far more sensitive to organophosphates.

    There is a thread HERE about the T mutation in rs662 and increased sensitivity to organophosphates.
    taniaaust1 likes this.
  13. Hip

    Hip Senior Member

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    I am not really sure what you are saying here. Everyone has previously-caught viral infections remaining in their body, but these earlier infections are normally kept in check (ie, kept in a dormant and latent state) by a healthy immune system. For example, most infants will have picked up HHV-6 by about the age of three; and most of us will have picked up Epstein-Barr virus in our teenage years, but these infections will normally be kept latent by a strong immune system.

    ME/CFS-triggering enteroviruses such as coxsackievirus B and echovirus are immunosuppressive, and so when you catch one of these ME/CFS-triggering enteroviruses, as a result of a weakened immune system, other latent viruses may spring back to life, and probably contribute to ME/CFS symptoms.
  14. Sparrowhawk

    Sparrowhawk Senior Member

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    I go into what I consider my triggering factors in my self-intro thread so I won't reapeat them here.

    But this poll made me realize the pesticide connection. I did visit a region that had been absolutely sterilized by pesticides following a disaster situation. I mean not a living thing on the landscape for several square miles. So in addition to exposure to a panoply of pathogens visiting refugee camps etc., and the vaccines i had before each international relief trip, pesticide exposure may have also been a factor.
  15. SOC

    SOC Moderator and Senior Member

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    D
    Dr Klimas is finding that her Gulf War Illness patients are likely ill from pesticide exposure with multiple vaccinations as a possible additional factor. I wonder if your illness might be closer to GWI than ME/CFS. If I were in your shoes, I'd get an appointment with Dr Klimas, even if I had to wait a couple of years.
  16. Sparrowhawk

    Sparrowhawk Senior Member

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    SOC thanks, that is another good angle for me to research. I was just researching Dr. Lerner and his approach based on some of your other comments, earlier today. When I saw he was in Beverly Hills I got excited, then I realized that its in Michigan! ;-) oh well.

    Back on topic: this research and related surveys into pre existing conditions and possible triggers/precipitating factors is important. When I did the intake questionnaire at Dr Montoyas it was pretty thorough, but still not as comprehensive as some here might wish, for instance I don't recall any question about mold exposure, or vaccinations, etc.
  17. SickOfSickness

    SickOfSickness Senior Member

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    Unsure about MOLD and others. Perhaps none of them, but I think I had exposure to other toxins.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Theres a high number of people who had no previous issues prior to cfs.
    How many of those would have said they were above level of fitness, maybe played a sport at a quite high level of standard, not neccessarily pro but say an A grade standard club player and above?

    I think this can show the initial severity of the infection can play a big part in this too.
    Olena and beaker like this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Yeah thanks :) , I knew that about sheep dips and hence why I mentioned my past with them.

    ah interesting about that gene, I want to get 23andme test done soon.

    I do know already that I do carry a genetype which has a very bad response to molds (shoemaker I think it was talks about my genotype being the worst one for being mold affected). Hence that probably did play a big part too my exposure with the major mold issues over many years in my home (and also for my sister too). I still have a sample of this mold in a little container which if I had money I'd get tested as I think its black mold too, it was getting everywhere (I scrapped the sample off the inside of the middle of the window of my daughters bedroom).

    Its tough in my case to know which were the things in my past could of helped lead to this illness as there is just so many which could of impacted in my case. Maybe with me having also Aspergers, maybe my sensitivity to toxins was further increased.
  20. brenda

    brenda Senior Member

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    I already had immune dysfunction, fatigue, chemical sensitivity, endocrine disruption and brain fog before my pesticide exposure with carbamate which was sprayed in my new home due to cat fleas from the previous tenants (I have the TT allels for PONS 1) due to mercury poisoning at 5 months old (seriously ill in hospital with it).

    Once I realised that I had pesticide poisoning, I cut all chemicals from my home - it really does help one to improve function. Now it is Lyme that I am battling but the pesticide poisoning symptoms definitely improved with strict adherance to a clean up. I also have not taken any medications at all since then as they are not good for the toxic. There are many alternative ways of treatments.

    If you have ME from an environmental toxic exposure, I feel it is best to concentrate on that and deal with that issue before looking at other treatments even methylation. Unless the clean up is done, one will just get worse. NO CHEMICALS AT ALL!

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