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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. woollypigs

    My story so far ...

    http://www.woollypigs.com/2016/10/thank-you-dr-sarah-myhill/ Coming up to four years and never felt better, she (Dr Sarah Myhill) must be onto something
  2. woollypigs

    My story so far ...

    Been asked what I'm taking. Easy everything that Myhill says that everyone needs regarding nutritional supplements and what she says is needed for mending CFS. Mainly this lot ...
  3. woollypigs

    My story so far ...

    I still can't believe this is happening, been three months, on the Dr Sarah Myhill regime/supplements. Pain in ears, sinus, feet, arms, hands, muscles - Gone! Fatigue, brain fog, weakness, drained, bad mood - Gone! After three years of utter pain, fatigue, mood gone south and no "cure" from...
  4. woollypigs

    My story so far ...

    Naa, I'm the first one who calls this snakeoil, witch craft and old wife tales :) But hey it is working
  5. woollypigs

    My story so far ...

    Roller nope, other the than like all the other ailments it was much worse on the nasal spray steroids and it is totally gone now like all the others.
  6. woollypigs

    My story so far ...

    Wow, I don't know what to say - but all my aliment have packed their bags and buggered off, poof gone! I no longer spend time trying to find good things, I spend a long time trying to find something that hurt, when someone ask me how I am :) Three years of doctors, specialist and consultants...
  7. woollypigs

    My story so far ...

    I know it is early days yet, and I fear a backlash from posting this :) Since I got off the steroids I have felt better day by day and right now feel the best I have felt in three years. All the ailments, pain, fatigue are much reduced. For example the pain in my feet is at least 80% reduced...
  8. woollypigs

    My story so far ...

    Well haven't got around to see the GP regarding my paperwork. I have felt too crap and meh to get my head around it and my great support/partner is swapped with work atm. Since I have been on steroids for my middle ear infection, where the specialist didn't find anything wrong, I have not been...
  9. woollypigs

    My story so far ...

    I have had other blood tests done, though never got their names. I know I have had the B12 and that was ok, I got that told by my GP. Never head about ANA. I know about the "ok" results, I could be high or low or 40% below my normal but still be within the "range" to be ok. A sports physio I...
  10. woollypigs

    My story so far ...

    @CantThink yes that is what I'm going to do.
  11. woollypigs

    My story so far ...

    The last blood test I had included : Full Blood Count, Thyroid Function, U/E, ESR, L.B.P, Phosphate, CRP, HbA1c. All I got the next day was a text/sms saying that my blood was ok. Need to go and collect my medical record, though the GP are not too keen on letting me having it. I can get to...
  12. woollypigs

    My story so far ...

    Thanks for your replies. Had a thyroid blood test a year ago. Though I'm sure that my wonderful GP will not let me have another.
  13. woollypigs

    My story so far ...

    In the last few weeks it has going a bit backwards, easier tired, weak, fatigued and out of breath. Have to do less, cut the dog walk even shorter and ignore house chores. Feet getting worse by the week, agony in the AM. Wakes up 3-4 times a night with very painful arms and hands. They are more...
  14. woollypigs

    My story so far ...

    I got my Lyme tests back from http://www.countypathology.co.uk and LDA had a look at it : The only three things I really suffer from atm as in when I don't work, cycle and do my hobby is: I still suffers from a blocked nose, sinuses every morning. Feeling like I'm coming doing with a bug...
  15. woollypigs

    Bee sting against Lyme

    I have heard about bee sting therapy before, even used to cure asthma, though I think it is more like snake oil. Too high a risk for an allergic reactions and even an asthma attack. Though under medical controlled conditions it looks like there might be something to it
  16. woollypigs

    Bee sting against Lyme

    Just spotted this : http://www.bbc.com/future/story/20150327-how-a-bee-sting-saved-my-life Now where is the closest hive?
  17. woollypigs

    My story so far ...

    I contacted my GP today and she understood my request for westernblot/immunoblot test. The GP couldn't find find it on their system, but contacted Airedale Hospital where they get their blood test done. The GP reported back that Airedale Hospital did send my test to RIPL in Porton Down. Where...
  18. woollypigs

    My story so far ...

    I contacted Lyme Disease Action - www.LymeDiseaseAction.org.uk (LDA) who then contacted Rare and imported pathogens laboratory (RIPL) - https://www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl - and they have no results for me, so I just had the screening test done...
  19. woollypigs

    My story so far ...

    Just had a read of the CFS Road Map (Thanks @SOC) Persistent fatigue: Yes I do feel a constant tiredness that even when I'm at 100% at today's standard, but not 100% at where I was before. On a good day now I feel like I'm running at 80% of what I was able to do before. Cognitive dysfunction...
  20. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    Please tell me that you got a little bell that goes PING when you are done LOL
  21. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @themjay @MeSci used to have more, now two (fixie and a touring), but scaled down because of a move and our big tour. Though I still got the old MTB frame hanging on the wall, which I got back in '95. It was also the bike that got back into shape after many years supporting the local pub, I was...
  22. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @themjay its been two years and a bit for an it is driving me up the walls. I can't imaging 11 years. I have tried two physios and each session knocked me out for 10 - yes I know the saying is out for 6, but I'm more beaten up than a 6. How did the Thai massage go with you? I will look...
  23. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @themjay Sorry to hear about that. Good to hear that you got a GP you can talk too. I saw one of the Associated Physicians there, who was very sympathetic but always had to go to a GP, when requesting an appointment. Then I got a GP, in hope that would speed things up, but only got to spend...
  24. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @themjay I went to Fishermedical because they had the best rating in town. Which are you using and are you getting any support from there?
  25. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @CantThink Yes the NHS test. @potbatch Let's see how Leeds goes and if I don't like it I'll move to YFC.
  26. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @CantThink Thanks! Yeah it is not fun for her - lung infection, coughing and asthma not the best combo. I have been tested for Lyme and it came back negative, as in there is no Lyme. Might be time to visit our friends in Brussels. Ohh I see KDM is located not far from Grimbergen, which is...
  27. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @potbatch Thanks for that, will keep that in mind when I get my first appointment. The two times I have been there, they have sent very well written (compared to the other NHS people I have seen) to me and my GP. I have read about YFS and wonder if I can talk my GP into referring me there, I'm...
  28. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    @CantThink yes but somewhat confused to which one gets the best results. Should I also look into my B12 etc while we at it. EDIT to add: not put my full attention to it as my partner is down with a nasty flu, so on full tea and tissues support duty.
  29. woollypigs

    Leeds and West Yorkshire CFS/ME clinic

    Thanks all! @justy no harm at all, be blunt and point me in the right direction. I'm at the bottom of a steep learning curve and don't fancy going the wrong way. Only asking here to learn. Next step is to figure out which test and where to get it from. /woolly
  30. woollypigs

    My story so far ...

    @daisybell I was IN NZ when it all went down hill, did I meet you while there ?!? :) I didn't feel any flu/cold/illness in the first six month of this at all.