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Have you had a remission?

Discussion in 'General ME/CFS News' started by justy, Jan 13, 2011.

  1. justy

    justy Senior Member

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    Cloud - im glad you asked DrMikovits that question. Its how i had imagined it would work in some way. I have always had since a child poor stamina and caught a lot of illnesses, but other than this i was quite normal and i feel that i had something underlying (perhaps XMRV) that eventually was activated by repeated infections (immune assault) and then a whole slew of vaccines to enter midwifery training couple with a lot of stress, pregnancies and a very moldy house. I eventually recovered to a good degree by really taking very very good care of myself for quite a few years, until measles hit me 3 years ago.
     
  2. free at last

    free at last Senior Member

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    Can see the potential immune dysfunction primers right there Justy, Measels is really not something you would want to put on top of a already weakened and dysfunctioning immune system.

    It was the same for me, at my worst i caught chicken pox, talk about sods law. Pem has been worse for me lately, and ive just got suspected Mumps, ( 5 days into it getting better, glands were like touch them and ill kill you lol ) guess thats going to help with the bone and muscle inflamation problems then. Not. Why when things take a turn for the worse for us, do we catch latest lovely virus in the neighbourhood ?

    After your measels. did it set off the ME/CFS in a very negative way. Im guessing it would have to have done ?

    I was supposed to go for the mumps blood tests, one after i left the gp, the other 10 days later ( so two tests for mumps ?)
    But i thought whats the point i know ive been attacked by a virus, confirming it is mumps isnt going to achieve a lot.And i might just bump into someone who has something else i dont want. So i havent gone sod it. weird though justy, as i havent been in a shop or around people for ages ( other than my family ) on no buses, just my house period. No one in my family is as of yet displaying mumps, and they are the only ones i could of caught it from ? My grandaughter was vaccinated with the MMR vaccine two weeks, which i belive is a live virus. seems a bit too much of a coincedence that, considering im living like howard huges.

    I wasnt a beliver of the vaccine connections with illness, im still not sure of a connection or what it actually is, but now im starting to go on the other side, and belive maybe certain vaccines are indeed causing problems in people, xmrv or some other problem im not sure, but too many coincedences am i seeing lately, for it all to be nonesense.

    I will still have seasonal flu shots though, as flu might just kill me quicker than the vaccine. hey ho
     
  3. justy

    justy Senior Member

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    Hi Free, sorry to hear you arent feeling too good at the moment. Did you not have mumps or the vaccine as a child. It depends on your age. When i was younger they didnt vaccinate against mumps, and im guessing you are a bit older than me. Also i would think that no one else has caught it as they are probably immune. Im pretty certain that mumps is a catch only once virus - although with M.E/CFS ive seen people catch many things more than once!
    Yes the measles gave me the big relapse i am still climbing out of now. As i said earlier in the thread o was more or less well or at least only very mildly affected for about 10 years until i had measles. I had actually been vaccinated against measles, but that doesnt confer life long immunity - only having measles gives you lifelong immunity. None of my kids where vaccinated, so they all had it first. Then i had all the symptoms, including spots in the mouth but without the body spots. I quickly developed pneumonia (for the 2nd time in my life) and then pleurisy, followed by an infection in one lung for 10 months - with ciontinous antibiotic treatment. I was very ill, but didnt get treated very well by the doctors surgery. I had to take a year of work and it was only when i tried to go back to part time gardening that i crashed really badly and havent been well since.
    My doctors where so rubbish they didnt even take a sputum sample in nearly a year of infections! eventually i had to pay to see the thoracic guy privately. TBH that didnt help much either.

    I hope you are feeling better soon. I know you had felt a lot recovered from the CFS/M.E so its really important you take it VERY easy whilst ill and give plenty of time to recuperate, This way you have the best chance of getting back to where you were. Sorry sounds like im giving advice - just because i want you to be o.k.
     
  4. justy

    justy Senior Member

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    Free - just wanted to comment on the live vaccine issue - i think you said elsewhere you had been changing your grandchilds nappy after she had been vaccinated. This is a risk issue for anyone who has not been vaccinated or had the illness. In fact in the u.k the only cases of Polio left are related to the use of live vaccines. Its well known that parebts without immunity can catch these illnesses from changing nappies.
    Another risk factor is swimming pools. My kids werent vaccinated and i was alwayds a bit concerned about people taking babies swimming in the weeks after vaccine. I couldnt find a pool that knew wether the chlorine would kill live vaccines or not.

    My kids are lucky that they had measles as kids and should have stronger immune systems as a result, also will never have it when they are older and thus more vulnerable. Its interesting that my husband didnt catch measles, but i did and i am sure i have had a compromised immune system since a child.
    All the best. Justy.
     
  5. SOC

    SOC Senior Member

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    Free,
    In the year or so pre-Valcyte I was getting bouts of what looked like mumps -- chipmunk cheeks, flu-like symptoms, etc. I have been told that it was probably related to a raging HHV-6 infection. I think it was something about HHV-6 replicating in salvary glands (which is why it is so highly transmissable)...?

    I haven't had one of those mumpish episodes in more than 6 months (I've been on Valcyte almost a year).

    It might be worth looking into.
     
  6. free at last

    free at last Senior Member

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    Thanks for the input Justy, Measles is rather nasty, can only imagine how ill that made you. And how it has affected what was already a shakey immune system for you. And psychaitrists wonder why we are depressed, often with phobias, and panic responses to further illness,
    Or even the potentiall to illness or a worsening of symptoms

    They see that as evidence that those conditions are really the cause of ME/CFS they just couldnt be more wrong, thats not to say i havent tricked myself into thinking im going to be ill soon, A panic reponse is something i learned very often early on, and at times of most distress, ( chicken pox, flu, severe ME/CFS Onset years ) I reckon nearly all of us have had to play that game, learn to understand it. panic and anxiety are natural responses to constant illness, the flight or fight response, Often long term ME/CFS patients can literraly mentally self destruct. Im sure there are lots of ME patients that are verging on certain types of mental illness, ( i am one of them ) But it always has to do with the fact, that i can no longer accept being that ill or vulnerable anymore.

    it can just start to get too terrifying, to horific to contemplate being there anymore. The fear can build to a point where the panic response can come on with even just the slightest suggestion, it did when i saw my kneck swelling 5 days ago. you all know the feeling. the feeling of losing control, and fighting to to stop yourself passing out.

    to learn to disentangle the mental response to ME/CFS can be quite complicated, so much so that most pyschatrits just dont have a clue how to tell the chicken or the egg problem. terrifying symptoms can lead to terrifying phobias, that can lead to panic attacks. its quite simple really. But to be fooled by a panic response is not the same, as a panic response being the illness itself.

    Because in some mental conditions it actually can be at the heart of a supposed illness, ( that has been documented by the psychatrits )
    Most proffessionals are just not clued up enough to disentangle this sorry state of phobic reaction to a lifelong torture of illness.

    And untill some are, this will never really be properly understood. Not sure why im changing the subject ( apologies for doing so, seems like i always do ) I just occassionly want to touch on the effect this illness has on our minds on our very peaceful souls. And the effect is nothing short of mental destruction.

    I hate it, and others that have been there, done that, know exactly what i mean. what this illness is capable of, both mentally and physically.

    I have even described to family the feeling is like being abducted by a murderer and systematically tortured, suffocated to the point of losing consciousness, allowed to breath, just so they can continue to suffocate you. And that is a hell, i never ever imagined could happen to people for a prolonged period of there lives.

    I havent had that feeling quite that bad for a long time, only flashes of it here and there. But the feeling is something i know well, and i suspect a lot here do too. But often is not spoke about, maybe because its just not cool, or acceptable to show our weaknesses in such a manner.

    A man is supposed to be brave, a fighter, someone who spits in the eye of fear. Well i havent learned that trick. because that just is not me. How i wish it was. if im waffling now, or making no sense, or am reverting to self pity. Then i apologize as i know most warriors here are so much stronger than that. Sometimes wish i had there strength.

    Thanks sick off CFS, ill look into that info. Not sure if its the reason, mainly because, this was quite a sever gland swelling, Ive not had a swelling quite like this before with the ME/CFS symptoms. unless it happens again it felt like a new virus, if it happens again ill know infact its a progression of a old one, if you see what i mean. Its good to talk with like minded people who might actually understand the ups and downs of this illness in ones life, the discussion was supposed to be about remission. yet just like snakes and ladders i seem to have gone a ladder down during this winter. now i need to figure a way to go up the ladder again. Cheers Justy sick of cfs, and all the others giving there input here, we are all in this together, just hope my ramblings touch a nerve, and help others speak about things they migh be bottling up. We may not ever fully rid ourselves of this. but i know long periods of fairly normal life can happen, as i have had that, and hopefully will have again, just like i hope all here do better in 2011. And we can find a way to make that happen for all of us
     
  7. SOC

    SOC Senior Member

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    Odds are probably against your "mumps" being due to HHV-6. :Retro smile: That said, I didn't have the severe swelling until 18mo ago (or so).

    I think my HHV-6 reactivated at some point when my immune system degraded so much it couldn't keep it in latency -- years after ME/CFS onset.

    The reactivation of a latent infection can feel like a new infection.
     
  8. free at last

    free at last Senior Member

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    Thanks for the heads up sickofcfs, ill look into this, especially if it happens again, really hoping it wont, as it was quite a gland infection.

    6 days still not over it, and getting pains in my head from what feels like the gland infection in the kneck, its better than the first couple of days, but not over it at all yet.
     

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