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Are You A CFIDS faker and poseur?

Discussion in 'General Symptoms' started by jenbooks, Dec 21, 2010.

  1. jenbooks

    jenbooks Guest

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    Twice recently I've been backchanneled that I don't and never had ME/CFzs, should get off the cfs boards, and that my experiences and posts are irrelevant to the people with the "true" disease. Briefly, these were my symptoms at their worst:

    Pain so bad I'd wake in tears
    profound fatigue so bad I was couch or bedbound all day and ordered in groceries--this went on for eight months
    feeling so poisoned in every cell I thought I would die soon
    waking at four a.m. so sick unto death I once again figured I'd die soon
    night sweats
    low grade fevers daily
    gastroparesis, severe constipation and stomach pain
    two day horrific headaches where I simply lay not moving inside a world of pain with hot water pads under my neck and back
    muscle weakness so I couldn't stand but had to lean or sit (standing was actually harder than walking)
    vertigo so I'd have to hold onto the wall going to the bathroom so I wouldn't fall
    those were many of the debilitating symptoms I lived with, along with terror that I was careening toward total bedbound disability and pain.
    Sore skin, hyperacussus, stiffness all over

    What helped me? Hyperbaric oxygen treatments, IV glutathione and meyers cocktail, ivig and getting out of a moldy place. Now with regular treatments the expression of my partially treated/halted illness seems to center around mcs and environmental illness with an outsize inflammatory and neuro-immune flare in reaction to "toxins" and molds healthy people never notice; along with some injuries along the way due to bad medicine.
    That's it in a nutshell. I've told many people many a time that hbot is a sadly underutilized therapy in ME/CFS.
  2. lancelot

    lancelot Senior Member

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    there are too many CFS/ME fakers and poseurs ~40%! goto the CCC to diagnoses yourself of CFS/ME or not! don't waste your time. i've found that so many on these forums posing as CFS but really having totally something else-ceiliac, lyme, mold, depresssioin, hemochromatosis, hypothyroidiism, etc
  3. dannybex

    dannybex Senior Member

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    My god, that's really bizarre Jenbooks, but of course not unheard of.

    The gall of some people to tell you if you have quote-unquote "real" CFS/ME or not, based on the fact that you became ill differently than they did, or that you have severe reactions to things they do not. I bet you these folks haven't read the Canadian Criteria definitions very closely, if at all, but still...that's just sad.

    And why does it bother them so much that they feel compelled to write you in such a cowardly manner?

    Lancelot -- with due respect, the problem with your argument, is that while there of course may be people with undiagnosed celiac, not to mention hypothyroidism (for example), if treating those things alone doesn't bring them back to full health, then they could still very well fit the CCC definition. Same goes for molds and other environmental exposures. It's not all about viruses, bacteria, and other "germs"...
  4. jenbooks

    jenbooks Guest

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    Thanks, Danny. I guess what you don't tell people assume doesn't exist. I tend to try and forget the worst. I also had whole body buzzing, and an inability to throw off minor infections. For instance An episode of cystitis didn't clear up for months and at one point was so bad I was in the bathroom every few minutes from pain, in agony,and didn't sleep for three nights. By that time I considered going to the hospital for a pain shot of some kind in spite of my mcs because I desperately needed sleep. I then fell asleep for one hour in the early morning and clung to that as a hopeful sign. Oddly enough it was sour currants that reduced the inflammation months later and helped me.

    I don't know what depresses me more: remembering the worst of it when I don't want to do so and feel that doesn't help me at all--but wanting to "set the record straight", or the fact people are so easily accusatory and belittling when someone actually manages to cobble together treatments that help? Or most of all, uprooting myself from my water damaged home that had been changed and altered in so many ways, by the gut demolition, and was making me sick; and going on a resolute journey of faith and hope for nontoxic and quiet housing only to encounter problems again and again, toxic and mold exposures again and again. And the sparsely available mcs housing is strange -- this one with hundreds of sq feet of cedar. Another one I'm not trying has raw plaster and all metal ceilings. I don't do well with metal interiors. Some are entirely foil lined!

    Cognition wise, I had word mixups and trouble with simple stuff like remembering a famous celebrity's name. I'd do weird things like type noze instead of nose or say a word that sounded similar phonetically to the one I wanted but was wrong. I would try to track the cognitive deficits by the celebrity names -- if I couldn't remember Sarah Jessica Parker's name from Sex and the City, it was bad.

    Early on my jaw became so stiff i could only partially open it. I had such constriction and pain around my chest area I thought I had pleurisy and went to the E.R. Simply smiling or laughing caused muscle pain. I hate remembering all that bad stuff.

    I don't need to join the club formally by telling my tale of suffering on blogs or in posts. Bec I've been searching for a nontoxic home for a year and because I haven't volunteered details of how hard it's been or nights in the car with no safe place to stay etc several people see me as making cross country trios as if I were having adventures. Well after a few comments like that I figure it was time to post. Nuff said.

  5. floydguy

    floydguy Senior Member

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    Perhaps but one wonders how many actually fit the CCC. If the CDC say X (1MM?) fit Fukuda, then there are probably many fewer that fit CCC. Do we know what this number is? We can't have it both ways saying all these people have ME/CFS are suffering, cause x amount of economic loss and then say half these people don't have "real" ME/CFS.

    I do agree though that people should eliminate as much as possible before settling on ME/CFS. It takes a long time and a lot of tests. Hopefully, at some point soon people will be diagnosed on the basis of whether they test positive for XMRV or not.

    The CCC is a step up from Fukuda on a research basis but it's still not a great way to make a diagnosis.
  6. floydguy

    floydguy Senior Member

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    Remember that in Cheney's practice the mold people were more likely to test positive to XMRV than the people who were only fatigued. For me being tired or fatigued is not my worst problem. As Jen, likes to say we're all different and this illness affects us differently.
  7. Carrigon

    Carrigon Senior Member

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    What works for one person, does NOT work for others with this disease. That's one major thing we have all learned over the years.

    Many of us have overlapping conditions. Not everyone has just one thing. I had Lyme first, then I got Fibromyalgia and POTS, then I got hit with what they said was mono and HHV6, then I got CFIDS/ME. And from there I got Hashimoto's. I have multiple conditions. And I've tried many things. No one's "miracle cure" has ever worked on me. We each have to find what works on us.
  8. ukxmrv

    ukxmrv Senior Member

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    Jen,

    Would it help if you defined that you mean by ME/CFS and checked that you met that criteria? I don't feel any need to ask you or to comment on your status. I'm just trying to offer a suggestion. For example, are you saying that you meet the Canadian Criteria? If so, just tell people that and don't worry.
  9. Esther12

    Esther12 Senior Member

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    I don't think it's fair to besmirch anyone with a CFS diagnosis, regardless of their symptoms (unless they really are faking - lying about their illness).

    While it's fair to complain about the ever broader criteria used for research, especially when it's combined with a presumption that everyone with a CFS diagnosis should be treated the same, it's not fair to blame those with milder or different symptoms for the diagnosis they've received. I guess it does depends on how they treat you though: If someone was overdoing things for a bit, got tired and then recovered by taking some time to relax and is now insisting that you just need to relax more... one can be a bit sharper.
  10. caledonia

    caledonia

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    It's against forum rules to harass people or their treatments like that. There's room for everyone here.

    Those who think they can diagnose someone remotely via the internet ought to set up a practice - just think of all the money they could make!
  11. jenbooks

    jenbooks Guest

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    I did back then. But I've never publicly written the details as I did just now, and I hated doing it. But if I don't, people may not consider the therapies I did, which might help them. And they'll misread all my posts in light of their snide skepticism.

    I don't anymore. But I have enough problems trying to find nontoxic housing that will allow me to avoid all the things that trigger serious "illness" for me.\

    Wishing you all a...happy boxing day! :) I like boxing day, just because.
  12. Esther12

    Esther12 Senior Member

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    Happy boxing day Jen. I've got some amusingly aggressive PMs in my time too. They're just to be ignored imo. Unless you think you'd enjoy winding up the person who sent them!
  13. Cloud

    Cloud Guest

    Hey Jen....yea we get all kinds of personalities before principles on these forums. People projecting their stuff. I would never offer an unsolicited opinion of another persons diagnosis like that.

    I have a question about the HBOT. My GP and I were discussing additional strategies for my current treatment plan. She mentioned HBOT, but also said that it's very helpful for some....but increases oxidative stress for others (which in my case would be very bad news). Can you offer any insights or favorite links on this?

    On the "fatigue" issue. Anyone with real ME/CFS knows that "fatigue" is the understatement of the century. We all know it's an extreme mis-characterization. But I say it isn't fatigue on any level. I know what fatigue, even extreme fatigue feels like...and this has never been it. The symptom needs to be struck from all ME/CFS diagnostic criteria not just because it's insufficient, but because it's completely incorrect. Yep, my limbs feel like lead, what little blood I have feels congealed, my brain feels like it's under water, and if I move or think too much...I will spend a few days in bed feeling poisoned. But none of that feels anything like fatigue.
  14. Cloud

    Cloud Guest

  15. jenbooks

    jenbooks Guest

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    Hi Cloud. Re: fatigue, it's not fatigue. It's more like the cell is poisoned and the mitochondria dialed down and not operating very well.

    Re: hbot, yes it does increase oxidative stress, but so does hypoxia, and in a much more dangerous way. Generally in these conditions (lyme/ME/CFS call it what you will) there is tissue hypoxia, too much inflammation, too much free radical damage, too much tissue hypoxia. So hbot can be very healing. However there is always too much of a good thing. For instance, it can mightily suppress anaerobic bacteria for the time being--and you can get a flareup of candida without competiton to keep it in check (candida is suppressed at something like 4 ata and above--way too high for a session).

    I would suggest trying it, but there's no reason to start aggressively. The 2.4 ata twice a day for 60 minutes is very aggressive. I would never do twice a day, as you also raise the partial pressure twice a day.

    You could start with one hour three times a week for instance, at 1.5 ata and see how you do.

    Or try a mild chamber--they're very helpful and very tolerable.
  16. lancelot

    lancelot Senior Member

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    I disagree. No other disease(s) can fullfill the symptoms checklist 1-6 in COMBINATION as outlined by the CCC except for one disease, ME/CFS. throw in some specific labs like Rnase-L, multiple infections, AND low NK activity OR XMRV/MLV+ and your diagnoses for ME/CFS is ~99% correct.

    As an example of the celiacs i've met at prohealth, celiacs don't have PEM or DPEM, unrefreshing sleep nor the mental fatigue equivalent to their physical fatigue. Celiacs will never come close to fullfilling the CCC of ME/CFS but could easily fullfull the CDC's 2005 empirical reeves CFS definition.

    CCC describes ONE specific disease called ME/CFS

    CDC's 2005 empirical definition describes hundreds of non specific diseases both physical and mental
  17. Cloud

    Cloud Guest

    Ok, so it's bascially a thing of not overdoing the Tx.....Go low and slow? Otherwise, are there any ways of knowing who will have a bad reaction (all of us have oxidative stress)?

    Thanks for your advice
  18. jenbooks

    jenbooks Guest

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    Low and slow is my approach to everything--especially after my four day disastrous experiment with salt/c in 2007.

    To me hyperbaric is generally a terrain modulator. All the tissues get more oxygen (pushed into the plasma under pressure). They all function better. There is a cleansing feeling about it. You shift into a parasympathetic mode under pressure. Bugs are suppressed.

    On the other hand, each body has its own needs and setpoint.

    So start low and slow. The worst that can happen is modest improvement. You can always do more.

    If you get major herxheimers, then back off unless you can tolerate herxheimers but they are toxin-producing.

    I recall feeling I was getting too much oxygen sometimes in Great Barrington at Jamie Deckoff-Jones' chamber. It was a 90 minute once a day session with an air break at 45 minutes. Sometimes I felt my brain shift and felt oddly depressed in the chamber. I didn't notice any long term consequences, and it would pass in an hour or two, but I think it indicated sometimes 90 m was too much for me.

    I used to do half an hour twice a week in my mild chamber. But thru experimentation, I found a whole hour once every week or two was better.

    If you have a reaction that's unpleasant, it won't be eternal. You'll recover fairly quickly. You can always stop a session--especially in a mild chamber, it's really easy to be let out in a few minutes. Or take the oxygen mask or hood off if you're in a multichamber.
  19. Cloud

    Cloud Guest

    Okey, great information....thanks Jen
  20. WillowJ

    WillowJ Senior Member

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    for research purposes and for physicians, it's super important to differentiate ME/CFS from other similar problems. For now, CCC is the best tool we have for this purpose. NK cells and such are coming soon... :)

    for the purposes of a forum like this, we should realize that there are a lot of people with similar problems who are also not getting medical attention and treatment. Whether or not we all have the same disease, we all deserve to be here.

    Not all treatments will work for everyone, and we all should understand that. On the other hand, overlapping conditions may possibly have overlapping pathologies and there's always a chance that something useful for one overlapping condition will also be useful for another. With the advice of one's own physician, of course.

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