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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. H

    In Rare Disorder, Woman's Immune System Attacks Her Own Brain

    Where do get this process from in the U.K.
  2. H

    Have Lyme ME/CFS got undiagnosed tumours

    I started with too much prolactin in my 20's. I am probably Poly cystic but not quite. I am wondering have I got very small endocrine tumours around and what the conceqence is? That's helped cause B cell problems chicken and the egg? :wide-eyed: I have read pituitary adrenal may preceed Lyme...
  3. H

    Sepsis + Lyme Disease

    No I only have the NHS and they no likE Lyme Disease! You could get treated for almost anything else. :vomit::eek: Still I have made the effort and emailed the Town council and told them they have a Tick problem? :devil: That will put the cat amoungst them:cat: They will have something to...
  4. H

    Sepsis + Lyme Disease

    I've emailed Lymediseaseuk asked if John Caudwell can speak to health ministers. I am going to talk to my private consultant this morning. He does not know either. I need to be in hospital and have done for sometime. I can't really afford private for much longer at this rate. This is sepsis but...
  5. H

    Sepsis + Lyme Disease

    I've been on doxycycline a few weeks. My legs had got a little better. But I went out after over 2 weeks in doors and I can barely stand. I have tried to get help from A&E like IV antibiotics they just send me away. My legs are hot and painful and I am sweating in bed. My CRP is 12 and my...
  6. H

    PACE and NICE guidelines raised in Parliament NOV 2016 MORE

    NICE GUIDE LINES. The question is? Is there a medical text book on ME/CFS. Or is NICE's Guide lines a load of hot wind. Designed to save money. John Caudwell said on his site there is no medical text book on Lyme. Yet NICE seem to have cobbled ideas together. Something that has gone...
  7. H

    CFS and Lyme? Not sure of anything. Help.

    Yes I know that's happening ELISA and imunoblot is used for the first stage. Test I don't have the capsity to read all the artritical as I have a phone it's hard for me to down load. I gather Australians have been using American tests and the antigens are not quite the same. So that makes a...
  8. H

    Do we think CFS affects the heart or not ?

    You know you can buy oxygen condensers to help with that.:redface:
  9. H

    Do we think CFS affects the heart or not ?

    I have unfortunately got both:bang-head:
  10. H

    Why is CFS so difficult to detect with standard instrumentation ?

    The insurance companies in America started a lot of the problem. That's spread. It probably costs more for the benefit system than if these people were working. There is another theory they want people not working so they can control them. In America they don't want people living in the out...
  11. H

    Do we think CFS affects the heart or not ?

    :smug: You need a halter neck monitor. Even then it does not pick stuff up. I am electrically sensitive (ES.UK ) when the factory near my house air con system sets it off. Nothing shows up. Let alone my Lyme. Like Everything else the government does not tell you. It does not even igknowledge...
  12. H

    Do we think CFS affects the heart or not ?

    :sleep::bang-head:Human Rights the way they treat us all needs to be instegated. No wants to help.
  13. H

    CFS and Lyme? Not sure of anything. Help.

    I've been to a few meetings in London at the holiday inn. It would be far to say the NHS have been following what happens in the US. Largely the insurance companies put payed to Lyme Diagnosis. But the governments also know there was a epidemic back in the 80's. So the more that can confuse...
  14. H

    PACE and NICE guidelines raised in Parliament NOV 2016 MORE

    Rituximab I looked this up on wekapedia not good it's used for cancer where 50% die like any cancer drug it more riskey. Unless your ME CFS is going to kill you? It's not worth it.
  15. H

    Anyone else have hands that itch severely in hot water?

    Yes it was something my mother used to say it problaly went back futher back her gran was a midwife in the 20's and 30's. I think she had knowledge of herbs. I find my Calcium absorbtion is not quite right. I can't take Calcium supplements they go straight through me. Though I can take full...
  16. H

    ME Association Lyme Disease tests

    I went to the Lyme meeting last year at the parliament. Chris Newton told us that the HPA/pub health thought we were an island hence the numbers of Lyme were so low. Birds fly all over the world Then they cross the sea to the UK the magically have Tick with no Lyme or Cephlitis. I went to a...
  17. H

    Studies point to gene-based glitches in ill Gulf War Vets

    Anything to do with the Gulf War troops were exposed to a lot of electropollution. We get very silly and think that's not possible. Our cells touch the air all around us. My father and my science teachers were in the RAF in the 50/60's. Any substance can be transmitted electrical. Over...
  18. H

    ME Association Lyme Disease tests

    I am bitten most days is that chronic Lyme or accurate. Or a combination of both.:(:(
  19. H

    ME Association Lyme Disease tests

    What I want to know how do be sue the B's. :devil: This is a change of policy: The original policy verses the new. Or I have you against a wall.:alien: I was told to go to Holland and get treatment there while the NHS treatment was a psychiatric hospital and taking off my antibiotics. They...
  20. H

    Anyone else have hands that itch severely in hot water?

    @taniaagust1 Low calcium was always said to cause chilblains. Link to Vit D and C? Calcium is linked to the cloting factor with vit K.
  21. H

    A long-standing friend and member of PR has died through lack of medical support

    http://www.meassociation.org.uk/2009//lyme-disease-and-mecfs/ I'be posted this in a few places. John Caudwell has got the Chief medical office to withdraw objections to EU approved tests. It was the HPA that did this since it no longer exsists.
  22. H

    Anyone else have hands that itch severely in hot water?

    This has been hiding on the internet. Meanwhile it's been archived. http://www.meassociation.org.uk/2009//lyme-disease-and-mecfs/ I tried to post it else where. Hope this helps us all.
  23. H

    ME Association Lyme Disease tests

    http://www.meassociation.org.uk/2009//lyme-disease-and-mecfs/
  24. H

    ME Association Lyme Disease tests

    The Cheif medical officer Excepts other lab tests. Other than those from what was HPA. John Caudwell campaign Can't link I don't know how to on my Iphone
  25. H

    Countess of Mar's Formal Complaint to the BBC

    Chris Packham (Spring watch) is trying to raise awareness if only for just dogs for Lyme disease. Humans come down the list. He's on UTube.com in various guises with Prof Wall and a vet. In the New Forest Also Wimbledon common ITN I don't know if it's the BB I'be seen 3 news reports on ITV...
  26. H

    Anyone else have hands that itch severely in hot water?

    Rosei You might have to sort this one out., I am working in a IPhone. Yes I did have problems with CoQ10 If you have a clot it could disloge it. Cause the first time I took it something like that happened. It was a dreadful thing it was like slurry going round my veins. I did call the...
  27. H

    Anyone else have hands that itch severely in hot water?

    Rosie 26 I try various things. I have Lyme it's a consultant battle of changing what you take. Something might help then it does not. I stopped taking Q10. And now I am calling the paramedic out with palpitation. My hearts slowed up. They and the docs try to make out its all in your head. They...
  28. H

    Discussion about Armin labs (Split Thread).

    Hi am new to this site but have always been aware of Lyme. From a early age. There are over 3,000 + different types of Tick. + Nymphs so most may not have seen what's bitten them? And 4 main types across Europe. Most don't see. Let alone known what it might be. As there is no one in the U.K...