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Can my kids / Wife get CFS from ME?

Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Sep 23, 2013.

  1. John H Wolfe

    John H Wolfe Senior Member

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    Your poor family!


    Again, I wonder if there are any signs of innate anatomic abnormalities in your family e.g. misshapen spines, hypermobility, connective tissue disorders, or historic sources of environmental toxicity (including pre-natal, peri-natal) common to you and your daughter?

    Also wonder whether she was breast fed?

    For me that would depend on circumstances surrounding infection/reactivation (typically viruses like EBV are spread through saliva) and the neuroimmunological and inflammatory profile of the child in question (how well their system is able to cope)


    Almost 100% of adults have evidence of previous infection of EBV so people whose family get sick with it, or similar viruses, really shouldn’t feel too guilty!

    Around 80% of ME/CFS patients vs 20% of controls have gastro enteroviruses, which may cause problems if they travel up nerves. Certain gastro microbes may interact with viruses e.g. e.Faecalis vs. nerve based pathogens like EBV

    For a while I flirted with the idea that ME/CFS may be to a certain extent rooted in gastrointestinal disorder. My current thinking is that gastrointestinal disorders and problems are secondary to a neurological aetiology (that may not, primarily, relate to infection at all)
     
  2. Daffodil

    Daffodil Senior Member

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    yes. it seem that those who improve with gut treatments are not cured, but better. there is still an underlying disease process of some kind.
     
    Izola likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I had what was called Bell's Palsy as a child, leaving me with a permanently lop-sided face. My own suspicion is that mine was caused by the chickenpox virus Herpes/Varicella zoster, which is also implicated in Ramsay-Hunt syndrome, which some conflate with Bell's Palsy.

    There's some info on Bell's Palsy here.

    I had severe chickenpox in the same year, hence my suspicion. I have often wondered whether this virus also played a part in my ME which developed in my 40s.
     
  4. justy

    justy Senior Member

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    John H Wolfe - yes my daughter was breastfed - well all my kids were, the youngest for 3 and 1/2 years. My eldest daughter who may have M.E has hypermobility (can touch her thumb back onto her fore arm and so can my youngest son) My eldest daughter also has broken her arm(s) now 5 times (latest elbow fracture 3 weeks ago) and my youngest son just broke both the bones in his forearm (snapped right in half) but his may be a coincidence. We tried asking at the hospital about all her broken bones, but they are not bothered.

    We ALL (not husband) had measles in 2008. Eldest daughter was sickest as she was 15, youngest two were fine. I (who HAD been vaccinated against it in childhood was very very ill and got pneumonia, then pleurisy) the following year both me and my daughter became very ill (hers was new, mine was a severe relapse after a long near normal remission) I ended up having to look after her as she was bedbound - i probably should have been also, but there was no one else to feed her and help her was, toilet etc. She was never adeuqately investigated by the NHS, despite having bleeding from her bum daily, intense stomach pain, recurring tonsillitis so that her throat would swell and she could barely breath and episodes of fainting.

    Luckily shes a lot better now, but has remaining niggling symtpoms - immune system not too good and has poor stamina, but she can work (apart from the odd broken bone and bout of tonsillitis which leaves her bedbound for week at a time)

    Sorry - wandered off topic as usual - rambling about my own problems.
    As far as i know there are very FEW cases of M.E affecting spouses, but plenty of mothers and children, and in my family and others cases multi generations.

    All the best,
    Justy x
     
  5. John H Wolfe

    John H Wolfe Senior Member

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    I too was a first born, breast fed infant. Was she ever sick as a baby? Dr. Perrin believes that most ME/CFS patients are first born breast fed and associates this with the fact that breast tissues accumulate fat soluble toxins over the life of the mother – I believe there are now studies emerging warning of the risks of breast feeding in relation to this. Quite how relevant it is to ME/CFS I’m not sure, Perrin is slightly obsessed with toxicity!

    This fits Rowe’s model. I wonder if any of you have ever been examined by an osteopath?

    I haven’t done any research into osteoporosis but a quick wiki suggests that beyond the obvious (calcium metabolism) it has been linked to thyroid function, NF-KB, TNF-a, and interleukins ~ all of these have come up at various points in my research, and I’ve heard anecdotally of bone demineralisation associated with severe cases of ME/CFS, so I wouldn’t be at all surprised if there are pathological links I’m afraid

    Gosh, sorry to hear that. Must have a tough constitution to have pulled through all that in the context of ME/CFS!

    Oh, well that sounds very positive! :)
     
  6. taniaaust1

    taniaaust1

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    I dont know why you were interested in misshapen spines but that is actually a yes.. both that sister and I have our tailbones stick out more then they should, my sisters is quite noticable (L shaped down there) and my chiropractor was working on mine due mine being not in the right curve there either

    Both my sister and I also shared bad mold exposure in our houses, we both got sick in the houses while the bad mold exposure was going on (my two healthy sisters havent had that exposure)

    Both my sister and I also due to medical profession things (she's a nurse, I was studying in health fields) .. so we both also had to have hep B vaccines in our 20s, I had the vaccine more then normal as my body wouldnt produce the antibodies (where as neither of my two healthy sisters had not had this till very recently when one got a job in a nursing home in past couple of years so now has had that vaccine......... fingers crossed that hasnt put her into the line of triggers which may end up getting ME, that sister too has a mishapen tail bone so if these things are factors, she's now got 2 of the ones that both of us who are sick have but without the mold exposure).

    So yes.. both me and my sister who is now sick, we have have had some similar things going on before the saliva exposure. I think the mold exposure.. may of been a big thing which made us more susceptable ending up with this illness (I have the genotype which Shoemaker says is the worst for mold problems so I assume this sister probably does too)

    My daughter could be diagnosed as EDS so there may be that gene in my family thou I dont have EDS. (maybe a group of bad genes make us more susceptable to catching this? I also have MTHFR polymorphism but my sister who has CFS hasnt).
     
  7. justy

    justy Senior Member

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    John H Wolfe - on the subject of breastfeeding and toxicity i would like to clarify for all here (as a trained breastfeeding counsellor) that indeed it is possible for breastmilk to mobilise toxins that the mother may have stored since childhood - hence some slight traces of banned substances from the 1970's etc have been found in women's breastmilk. However there are a couple of important points to rememeber:

    1. Babies are exposed to toxins in utero and research has shown this to have a far greater impact on the growing fetus and brain developemtn than the higher levels associated with breastfeeding.
    2. Artificial feeding also poses risks to the baby in terms of toxins - from a report by The Association of Breastfeeding Mothers:

    3. Artificial feeding causes greater pollution in terms of its production and packaging therby increasing the overall burden on society of pollutatns which all children and growing infants are then exposed to.

    4. Breastmilk contains many nutrients that are so far superior to artifical feeds that even in the face of toxins (which are also in artificial feeds) the baby will be recieving far superiuor nutrition and all the benefits of the immune boosting proerties of breastmilk.

    5.When mothers gain a suffiient amount of weight during pregnancy it is this newest fat store that the mother will be drawing on whilst breastfeeding, rather than having to go into old stores of fat from childhood when toxins may have been more abundant. There fore a woman can protect herbaby in a number of ways - by losing all excess weight before pregnancy and then gaining during pregnancy whilst having a low toxic diet etc she will then use the newer fat stores. Or by simply gaining sufficient weight whilst pregnant and losing weight slowly and naturally over the forst year whilst breastfeeding (rather than crash dieting after baby is born) Modern ideas of not gaining excess weight or fo getting back to pre pregnancy shape as quickly as possible will inevitably lead to a greater release of toxins through the breastmilk to the baby.
    http://abm.me.uk/wp-content/uploads/2012/10/Ecological-Impact-of-Bottlefeeding.pdf
    http://www.waba.org.my/whatwedo/environment/pdf/Joint.pdf
    Perrin is not correct to suggest it is more harmful to breastfeed in terms of toxic load and the research does not back this theory up.
    All the best,
    Justy.
     
  8. John H Wolfe

    John H Wolfe Senior Member

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    My theory for the pathology of ME/CFS (writing a medical hypothesis to formerly present the model at the mo) centres on neuroinflammatory responses, commonly arising in relation to neural sensitisation, often associated with anatomic abnormalities but also linked to responses to infectious agents and to environmental toxicity


    I wonder what their view would be as to the effect of these abnormalities on nerve mobilisation, I’m guessing they may serve as to restrict ~ would fit Rowe's model (mine is based partly upon his)

    I have yet to look into the effect of mold in any great detail but I am fairly convinced that at least some of the symptoms in ME/CFS relate to the activity of microglia (immune agents) and they may be activated by mold, although apparently do not release some of their harsher products (inflammatory cytokines) in response to beta glucans (mold spore biomass)

    ~ I gather you’re in the medical profession but figured I’d keep the bits in parentheses in for anyone else reading who’s interested

    I have scarcely touched on vaccines in my research but there may be a role for them for sure, would certainly explain why there appear to be so many people getting ME/CFS particularly in the modern era / in the developed world. Might also explain Gulf War Syndrome. The only vaccine I’ve had that fits the chronology of my onset is BCG, which is known to activate NF-KB (a protein complex associated with adverse immune responses in ME/CFS patients)

    Quite possibly – mould is pro-inflammatory and Rowe suggests that the two main things that fit the profile he’s seen in adolescents with ME/CFS seem to be anatomic abnormalities and hyper-inflammatory responses ~ if your body has been subject to ongoing exposure to pro-inflammatory spores then that would likely mean chronic inflammation and possibly elevated neuroinflammatory responsiveness (to sensitising signals from peripheral nerves)

    I should think so aye

    I'm not too familiar with MTHFR but that would appear suggestive of enhanced susceptibility if ME/CFS is indeed a neurological disorder, never mind one that may be characterised in the way that I have, as relating to chronic neural sensitisation
     
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  9. John H Wolfe

    John H Wolfe Senior Member

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    Handy advice, worth considering :)

    Oh?
     
  10. taniaaust1

    taniaaust1

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    That polymorphism affects the methylation cycle and interfers with ability to absorb folate (30% of normal , I think it is). My daughter was born with a very rare spinal disorder much like spina bifida due to me having this polymorphism.

    As far as immune issues go, my other child developed a 1 in 50,000 disorder where she couldnt fight off a common virus and needed countless (17?) surgeries due to it (HPV growths on her vocal cords causing her to be at risk of her airway becoming completely blocked (she was having to have surgery every 2-3 months for years). She caught the HPV from me when I gave birth, I'd had it so severe that I was previously advised to have an abortion (they were worried I could develop cancer from it..that was way before I got ME). So yeah I do think there must be some kind of immune abnormality there seeing we both couldnt fight off a common virus. I personally think this daughter of mine would be carrying a big ME risk, same with my EDS daughter (who also has Aspergers).

    I'd love to see a study done to see if it can be predicted who is likely to get ME/CFS based on their history.

    I wish they'd look more at the immune system and if we have inherited immune abnormalities coming into play with this illness.
     
  11. taniaaust1

    taniaaust1

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    Thanks for sharing that. A poll here on that would be interesting (we just would need a similar poll done at a non health site so we can have a comparison with the normal population).

    I was first born (of 4) and breast fed. My mother thou was only a child herself when she had me (pregnant at 16) so I dont know how much toxins she would of carried. My sister who has CFS is the last born of 4 (all my sisters were breastfed). My cousin who has ME was the 3rd child (of 3.. no idea of her breast fed status). My other cousin who's on disability who could have CFS, she's the eldest and was breastfed. We were all healthy babies.

    Just going by my family members who are sick, what number child we were seems random.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Microglia have distinct properties and functions, which anyone wanting further info on could check out this Encyclopedia Britannica link

    and/or this interesting and possibly-relevant recent abstract on microglial hyperactivation in older brains.

    BTW, I have no spinal abnormalities AFAIK and my good posture has been remarked upon on several occasions! I am also a middle child.
     
  13. John H Wolfe

    John H Wolfe Senior Member

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    I see, interesting link


    Sorry to hear that


    My goodness how unfortunate, again I’m sorry to hear that


    I certainly wouldn’t discount the possibility aye. Marco talks a fair bit about commonalities with certain disorders including ASDs in his sensory gating vs. neuroinflammation series


    (from what I’ve seen of his series over the past few days it seems he and I are on near enough the same track in terms of some of the theoretically key pathological themes in ME/CFS)

    On their history of health, or genetic profile or..?


    I sense that whilst a definitive biomarker linked intimately with the core mechanism(s) may be some time away, there are plenty of candidate predictors emerging on the genetic side, and hopefully soon on the epigenetic side too :)

    At least, for the time being, we are armed with some ‘best practice’ and anecdotal evidence for common environmental stressors that may appear to precipitate, and/or complicate the condition ~ so we know about stuff to avoid e.g. stress, toxicity, antigens, dehydration, sleep deprivation, exhaustion – and arguably excessive physical exertion

    Aye, the thought has crossed my mind but I figured I’d wait to do one until I have a panel of options for people to fill out (a bit like one I’ve seen Cort do in the past), which would include all the potential risk factors that I come across in my research. They might currently include:


    • First born

    • Breast fed

    • Hypermobility and/or spinal abnormalities and/or neuropathies

    • Forward head posture and/or slumped/hunched back posture

    • Illness associated with persistent viral infection e.g. EBV

    • Exposure to environmental toxins e.g. mould, chemicals, heavy metals

    Depends on her living environment, diet, and innate capacity to detoxify, as well, as Justy suggests, as the extent to which gained/retained weight with pregnancy


    I think what Perrin was getting at was that siblings who come along later tend not to have the potential to be exposed to quite such a backlog of toxins (as the child before them may ‘take one for the team’ so to speak). This would not discount the possibility that:


    A) Toxins may not be released to older siblings e.g. if the mother put on/retained weight with pregnancy

    B) More toxins may concentrate themselves in the mother's breast tissues between births

    Interesting. I suppose it’s possible that the ingestion of some toxins could have insidious consequences e.g. neurotoxic/degenerative rather than producing acute gastrointestinal responses, however it is of course also possible that if none of you were unhealthy babies then the breastfeeding did not have any remarkable toxic effect
     
  14. Elph68

    Elph68 Senior Member

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    Hi Tania,

    Your kissing theory is possible if you consider that enterococcus/viridans streptococcus inhabit the mouth .... It seems that viridans streptococcus is a main player in this condition for a lot of people, the IBS is the key. Viridans streptococcus are multi drug resistant, form biofilms and carry enzimes such as mytolysin and galatinase which enable the bacteria to cross the epithelial barrier and cause inflammation creating an ongoing auto immune response. I wouldn't mine betting that if you did a streptolysin O or dnase B or hylaundranise antibody test, you would find some answers. Viridans Strep are the bugs that cause mouth ulcers, tartar build up, tooth decay and are very closely related to streptococcus pneumonea which is a highly dangerous pathogen. ....

    Haven't seen a whole lot of people mention of this on this forum .... Or anywhere really ...... Our Melbourne University are at the forefront of this research and the University of NSW seem to be leading the way for treatment ....

    A small group of us here in Tasmania are standing up to our GP's demanding to be heard www.superbugskill.com

    Stop the cause of the inflammation, stop the disease ....
     
  15. Elph68

    Elph68 Senior Member

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    Hey John,

    Pretty much everybody has been infected with EBV, whether they have CFS or not ...

    enterococcus faecalis uses gelatinase to cross the epithelial barrier and causes inflammation and triggering an auto-immune response. The highest pathogenic strains have toxins such as cytolysin and hylaundranise which lyses (dissolves) the epithelial cell completely and sends your immune system into overdrive .... The worst strain, V 583 strain carries phages (viruses) that kill competing bacterial strains .... Take these with streptococcus and lactobacillus pumping out H2S2 and lactic acid into your system with a big pile of other toxins and you are going to get real sick .... common sense really ....

    The neurological disease of CFS is caused by the physiological disease, and you were right .... the science says it starts in your gut ...

    Cheers.
     
  16. John H Wolfe

    John H Wolfe Senior Member

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    Hi Elph,

    Indeed, but I believe the neurotropic nature of such infections is of pertinence, the enhanced deleterious effects of such pathogens in states of immunodeficiency, interaction effects with other microbes (e.faecalis among them) and the synergistic factors: glial priming/hyper-activity and (other-source) neuroinflammation e.g. biomechanical: peripheral-central sensitisation

    In that context, transmission of such viruses may prove important to the pathogenesis of ME/CFS, or at least its complication, hence of relevance here. The other factors I will discuss in the thread exploring my theories on the condition as I don't wish to take things off topic too much (more) here!
     
  17. Elph68

    Elph68 Senior Member

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    Well I have only just started my path .... and I am about to get hit with a BIG pile of antibiotics for 8+ weeks, along with my wife and another friend with CFS/Fibromyalgia .... should strart around christmas ....

    Cheers.
     
  18. taniaaust1

    taniaaust1

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    Interesting you mention strep as Ive had a lot of issues with it. I had it in my leg several times which I had to have multiple antibiotics for.. it started to turn parts of my leg pitch black, the issue kept coming back and I was dealing with it for probably a year. (I ended up having both strep and staph B which I also had, being treated at the same time). I also was found to be one of the 25% of people who carry strep in their nose (and got that treated too).
     
  19. Elph68

    Elph68 Senior Member

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    Darn .... Your strep problem is coming from your bowel most likely .... and every time you take antibiotics you increase its resistance and turn on the genetics which make it more pathogenic. sounds like they found strep A, B .... It is the ones they don't find Viridans and enterococcus, which is known to cause bowel problems and CFS/ME

    Your doc needs to clean it out of your bowel ..... Get a Bioscreen test and go after it ...

    Kill the cause of the inflammation, stop the disease .... www.superbugskill.com
     
  20. RedLineBoy

    RedLineBoy

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    Wait this is making sense now...my cfs is really from viral infection.

    After my encounter I also ended up getting prostatitis from this. It was a staph infection. I was given a course of doxy for long time.....

    So pretty much, this girl I was with seem to have every single disease.... All from one episode I got, CMV, EBV, HSV 1, Staph infection, HHV 6, Parovirus.

    How is that
     

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