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Immunotherapy for CFS/ME

Posted , 10 users are following.

antand23
antand23

Having tried CBT, acupuncture, chiropractic, osteopathy (Perrin), a work break and homeopathy and psychotherapy (the last two still ongoing) I have now smashed open the piggy bank and am looking at allergy testing/low dose immunology. This seems to have helped some people ...but pre-supposes that I actually have an allergy/allergies and it/they are causing the problem etc..

Feels like a long shot, but I'm getting desperate enough to chuck money at further things that may work.

Anyone else tried this approach?

0 likes, 16 replies

16 Replies

  • haylee93669
    haylee93669 antand23

    Posted

    I did, it costs a fortune and you're not guaranteed a cure at the end of it. I would say go ahead and go for the tests so see what you're allergic too and then just eliminate whatever aggrevates you there after for a 6 mo the period and slowly reintroduce whatever it is.

    Hope that helps X

    • antand23
      antand23 haylee93669

      Posted

      Thanks...sounds like good advice. Cheaper and probably perfectly viable just to eliminate any offending food etc.. Cheers
  • emma11851
    emma11851 antand23

    Posted

    I resulted in having and allergy test after having awful problems with my skin and docs just giving my cream that didn't help. I was in the way to work one lunch time and out of desperation I went into a Chinese shop on the spur of the moment and they took some hair and sent it off for testing. Best thing I have ever done! I now no longer suffer with any skin complaints except if I eat something I shouldn't of done. But also my energy levels are much higher than ever. It also tells you vitamins and minerals that would benefit you. My friend did the same as she was having trouble with constipation and had tried everything until she found out what she was allergic to. Now she has no trouble at all.
  • BS8
    BS8 antand23

    Posted

    I tried it in a well known hospital. Yes I reacted to the antigens but long term it did nothing. Yes it cost me a fortune as I had two of my children treated at the same time. We're all laid up with CFS.
  • emma11851
    emma11851 antand23

    Posted

    If you go to a Chinese herbal shop it costs less than £100. I would definitely worth it.
  • Izzie_Lizzie
    Izzie_Lizzie antand23

    Posted

    Hi there,

    how did you find Perrin?

    Am thinking about it.

    Has it helped significantly would you say?

    Did you struggle with feeling rubbish at the start?

    Would love to hear from folks who have gone through it.  Maybe should start a discussion!

    Chears

    • antand23
      antand23 Izzie_Lizzie

      Posted

      I felt there was an improvement in secondary symptoms (dizziness and concentration) over the first few months...and mobility in upper back/neck improved. But then it plateaued ...in fact probably worsened but that was more due to me being hit by depression.

      It clearly has worked for some people..some initial (temporary) improvement for me. Did nothing for the fatigue, derealisation etc..

    • Jk1952
      Jk1952 Izzie_Lizzie

      Posted

      Hi Haziej, I am being treated with the Perrin Technique. I am using an osteopath who was trained by Raymond Perrin. It is symptom control as a cause/cure is not yet available. I have benefitted as I had carers coming in daily to bring me food and help with personal care. I am now much more independent. I usually go monthly but I am having treatment every 3 weeks at the moment due to a set back.

      hope this helps. 

    • Izzie_Lizzie
      Izzie_Lizzie Jk1952

      Posted

      Hi jk,

      thank you.

      I know a little about it.

      With you being that unwel when you started Perrin did you find it very very hard?

      Did it make you feel worse in the short term at the start?

      When did you start to notice a positive effect from it?

      Would love to hear your feed back!

    • Jk1952
      Jk1952 Izzie_Lizzie

      Posted

      Hi Haziej, sorry about late reply. The Perrin Technique did make me a little more poorly. His treatment releases toxins into your system which have built up over a long time. To alleviate this I drank loads of water, as advised. I also took milk thistle to support my liver as it had a big detoxing job to do. However, I definitely felt that the benefits far outweighed the discomfort.

      hope this helps.

      kind regards.

  • alison44235
    alison44235 antand23

    Posted

    No have spent too much on cons allready, so am not going down that route again.
  • Fidd
    Fidd antand23

    Posted

    Personally, I'd advise against spending money on things unlikely to be helpful. I think that there is a strange social pressure for those with ill health to pursue 'treatment', regardless of whether there's any good evidence that the treatments available bring any real benefit, and this might be particularly strong for CFS where a lot of false and misleading claims have been made by 'mainstream' researchers about patient's ability to recover. I've seen a lot of people loose a lot of money on a range of questionable interventions over the years. If that money had been donated to rigorous research projects I expect that we'd now be in a better place.
  • dillemma
    dillemma antand23

    Posted

    Yes, I have had great success with "Non invasive allergy testing" which is fairly cheap...  I paid about £35 in 2002 for a session that changed everything for me.

    I saw an article in a ME magazine and followed their advice and contacted a central database of practioners which I don't know how to access any more...  ( I looked online and found a service that offers the same type of service; search north west allergy testing clinics to see the type of service that I am talking about ).

    The testing I had was with mild electodes or something with wires to my hands, I think, which somehow measured my reactions to sustances introduced and the practioner could see on a monitor the reactions.   He gave me a long list and I set about putting it into action.  Within 6 months, which it took me to actually implimenteverything I needed to, I had really gained control of my ME/CFS.  It was not recovery, but control and getting my life back.  My quailty of life was greatly improved and, although I don't manage to control everything all the time i.e. Mold, pollen ect...  I have been on top of it.

    I haven't tried any of the expensive boold tests or hair tests so I don't know how they are, or the immunotherapy that you mentioned.  I have had homoepathic desensitizing which was helpful.

    I'm not sure whether my "allergies" would show up on any such test as they are more of intolerences or sensitivity than allergies and have been tested by doctors to no avail.

    I feel that the method I described is probably more suited to a more "elusive" type of allergy.

    If you do go for the blood test or hair test, I would be interested to hear how it worked for you.

    Whatever you do, good luck!

    P.S. The practioner I saw was also a homeopath, who I started to see after that and I do think that homoepathy helps too.

    • antand23
      antand23 dillemma

      Posted

      Thanks for your advice and experience ...will have the allergy tests and see what they show. Am persisting with homeopathy and psychotherapy and easing down to P/T at work....am confident I will at least get a good imorovement eventually. Cheers
    • Jk1952
      Jk1952 dillemma

      Posted

      Hi dilemma, just letting you know that I'm looking into the electrodes intolerance/allergies testing.

      thanks for the info.

    • dillemma
      dillemma Jk1952

      Posted

      Great! i hope it does well for you.

      Good luck!

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