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FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by keenly, May 17, 2011.

  1. Jenny

    Jenny Senior Member

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    jonnyboy - I had similar autonomic testing done at the Breakspear. They insisted I had allergies. Like you I've no evidence of these. I've tried all sorts of exclusion diets, to no effect.

    They strongly recommended their allergy neutralisation treatment but I did 6 months of this, at some expense, and felt no different at all.

    Jenny
    jonnyboy likes this.
  2. jonnyboy

    jonnyboy

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    Thats actually very interesting Jenny, since ive also had the immunotherapy treatment for about 8 months now, with no beneficial effect whatsoever. Had been thinking of stopping it for some time. The whole process never made any sense to me whatsover with the end points etc. I never got a reaction to anything during the whole testing process either. The fact that my problems are caused by allergies, yet im unaware of these allergies......seems a huge stretch to me. Couldn't understand why they wouldnt try an elimination diet first. Though obviously no financial benefit for them in trying that. I think they have been right on the money in terms of the autonomic report, it does fit my symptoms to a tee. The treatment i think is questionable thou.

    Since I've had the eds 3 diagnosis, I'm wondering if all my symptoms have come about thru some sort of failure of control over my sympathetic nervous system. Its seems to be stuck in overdrive. Probably pointless, but ive tried relaxation stuff and made no difference whatsoever. I had a sudden onset of my illness 2 years ago, the only thing I'm fairly sure of is that it wasn't viral. Had no viral symptoms other than a sore throat and aches for the first 2 weeks of being ill (at the time i thought i had flu), unless it was a hit and run virus.
  3. Jenny

    Jenny Senior Member

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    The sympathetic overactivity problem is what I have too, most of the time. I do a lot of meditation, which does help for an hour or so, but then the 'wired' feeling returns. I do think one of the keys to improvement is to get the system to calm down, but how?

    Jenny
    jonnyboy likes this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't think that the roots are in the autonomic nervous system, but that the ANS has been affected or damaged by other conditions. In depth testing will show abnormalities in other areas. The ANS seems to improve its functioning when deeper causes are treated.

    Sushi
  5. voner

    voner Senior Member

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    sushi,

    What are some of those possible deeper causes and possible treatment?
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is complicated! And probably pretty individual--which is why testing is helpful. All our systems are inter-related--brain, nervous system, immune system, gut, etc., and thus affect each other.

    Plus the many possible sources of damage--viruses, infections, unknown pathogens, toxins, heavy metals, injuries and traumas...on and on. I believe there is a lot of research going on to try to unravel such questions.

    But, in the meantime we can treat what is found in us and many get a measure of improvement this way. Dealin with all of the above has helped different groups of patients.

    Sushi
    taniaaust1 and Xandoff like this.
  7. Jenny

    Jenny Senior Member

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    I agree, but I think one can become more functional when in a more relaxed state.

    Jenny
  8. Mattman1

    Mattman1

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    Voner,

    My post-viral dysbiosis was so bad, that it mimicked almost all of the hallmark cases of CFS. I got incredibly lucky, found a forum that dealt specifically with gut, and a member there said to try some pro bacteria. Bought some yogurt, and felt 50 percent better. After a week, I was back to normal. Who knows what would have happened if x number of months went by.

    So did I have CFS? Technically, no. But all of my symptoms fit like a glove. I guess the point is, at least we are all in the right direction by staying in communication.

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