• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. S

    Dr Weir’s supplement protocol

    What I posted plus advice to my doctor on B12 & folate this was all Dr Weir gave me. As a very long term ME sufferer with a long history I was surprised if I’m honest. ETA: I saw him in January this year so very recently unless he’s changed it all since then?
  2. S

    Microscope analyses with Dr Jaeger

    I’ve had a reply from Dr Jaeger’s lab and they’ve said some people come to Germany for bloods to see whether HELP apheresis or medication could be a treatment worth trying. I just wondered has anyone had these bloods done or had experience of Dr Jaeger’s clinic? To say it would be an upheaval...
  3. S

    Dr Weir’s supplement protocol

    Has anyone else done Dr Weir’s protocol for ME/long covid? I’m intrigued if it’s helped anyone?
  4. S

    Treatment for shortness of breath (air hunger)?

    Have you had your B12 levels checked? I was severely deficient and since having B12 injections my shortness of breath has mostly gone, I used to feel like I wasn’t breathing in enough air just laid in bed. I used to have a hand held fan on me so it felt like more air was getting in but that’s...
  5. S

    I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

    I started hydrocortisone (up to 25mg) quite a few years ago now, it has by no means cured me but it got me from being bedbound to being able to be upright! I’m still largely limited by my ME, but I swear the HC is what has helped. I also am on 75mcg thyroxine (couldn’t tolerate pigs hormone as I...
  6. S

    Burning in spine

    I hope I am posting this in the right section, but does anyone get burning in their spine? It’s driving me crazy! I’ve generally always had pain at the base of my skull (which has also recently been worse), I started experiencing burning in my spine 5 years ago but it come and went. Lately it’s...
  7. S

    .

    .
  8. S

    Vaccinations with ME

    I’m going to Istanbul, I’ll be staying with my boyfriend’s family in their home. I won’t be going anywhere ‘off the beaten track’ so to speak.
  9. S

    Vaccinations with ME

    My dog bit me a few years ago and they decided against giving me a tetanus shot in A&E after I said I’d had a reaction when I was little. I had bloods done and it showed I wasn’t covered either. I’m glad you were ok, it’s certainly a hard decision to make!
  10. S

    Vaccinations with ME

    I’ve done some reading and I’m wondering if I just stay away from any street food/food not prepared by myself/boyfriend and absolutely won’t drink any tap water just bottled (or brush teeth with tap water) hopefully I can reduce my risk of the Hep A. I’ll have to also avoid wanting to stroke any...
  11. S

    Vaccinations with ME

    That’s interesting! I actually saw a mast cell specialist immunologist who knew about my reaction to tetanus, and the fact I fell ill around the time I had the meningitis c vaccine, he just did basic allergy tests which I only reacted to wheat and grass pollen. He wanted me to have Hib...
  12. S

    Vaccinations with ME

    Hi Bread :) I’ve been severe in the sense of needing to be tube fed/was bedbound, then mostly stayed at housebound for years but 80% of my day was in bed, would need an ambulance to appts etc. as couldn’t tolerate sitting up in my wheelchair. Now I’m not bed bound and can manage small walks...
  13. S

    Vaccinations with ME

    Hey everyone. Looking for some advice... I’m a long term ME sufferer, I became ill around the time I had the meningitis c vaccine when I was younger (coincidence? Who knows), I also had an allergic reaction to the tetanus vaccine when I was younger too. I’ve suffered mostly with severe ME over...
  14. S

    Methylfolate and B Complex help

    Hi everyone. Looking for some help, I have low folate levels (4.2 so not under the range which is 3.9-26.8 but can see it's been dropping over the years from previous results). I've just started taking Thorne's 1mg (how do I know what dose to take?) methylfolate, and I wondered do I need to be...
  15. S

    Immunology - results and second opinion

    Yes @minkeygirl the immunologist (who is into allergies) said the only next step would be vaccinations (HIB, pneumovax ll & tetanus). So basically there was nothing more he could do for me until I had those? Urgh.. In the UK it's very hard to get IVIG/IG. How did he diagnose the...
  16. S

    Immunology - results and second opinion

    I had some immune tests done by a private immunologist back in 2014, his only suggestion was to have 3 different types of vaccines from my results. I decided against having the vaccines given that I fell ill not long after having the meningitis C vaccine when I was 12 years old - I am now 26 and...
  17. S

    Shortness of breath

    Just wondered how many people experience shortness of breath just laid in bed? I feel like I can't breathe despite laying still and doing nothing. I've had it for years but nothing seems to help and I still have no idea what is causing it, it seems to come along when I'm at my worst though and...
  18. S

    Vital basic supplements an ME patient should be on?

    Basically wondered what vital basic supplements someone with ME should be on, and at what doses. I have been on may supplements in the past but as they weren't making a huge difference I sort of just stopped taking any. The only stuff I have now supplement wise is B12 monthly injections due to...
  19. S

    Vaccinations - any evidence?

    Thanks it's good to hear from someone in a similar position, I also feel like it's a risk I may have to take because I'm just not getting better and it's been far too many years now. Do you mind me asking what has showed up wrong in your immune tests?
  20. S

    What's your CD4/CD8 ratio?

    The only immune tests I've had are IgG, IgA, IgM and subclasses - low in IgM and IgG3 & IgG4. These are the other results... WHITE CELL COUNT *12.06 x10^9/L 3.0 - 10.0 Lymphocytes 2.95 x10^9/L 1.2 - 3.65 LYMPHOCYTE IMMUNOPHENOTYPE WHITE CELL COUNT 12.06...
  21. S

    What's your CD4/CD8 ratio?

    I've found you can get these tested privately in the UK - is it worth it? I mean will anyone (Drs) take any notice or is it more for us? (not sure how to word it but I'm sure you understand what I mean!)
  22. S

    Vaccinations - any evidence?

    Hi, I've posted here before about an immunologist I see (who has diagnosed me with mannose binding lectin deficiency, and is treating me for mast cell activation disorder), he has also done other immune tests and I ideally need pnuemovax ll, tetanus, hib & something else I've forgotten... I...
  23. S

    Mast Cell Activation Disorder - CD117 biopsy positive but bloods/urine neg

    Hi! I'm currently being trialled on anti histamines (Fexofenadine 180mg x2 daily and Cimetidine 400mg x 2 daily), and about to start a mast cell stabilizer (sodium cromoglycate). My questions are this for anyone who is able to help... I have had bloods and urine tests done to check for mast...
  24. S

    Vaccinations to boost immune system

    @Ema So could I get away with having 'just' the Pneumovax ll vaccine instead of Pneumo plus plus hib, men c & tetanus? In terms of if they are wanting to see my response? They're wanting to give them a month apart from each other (the pneumo then hib/men/tet). I just feel at a loss as to where...
  25. S

    Vaccinations to boost immune system

    Thanks for the replies they're much appreciated - I'm really lost as to what to do. Ultimately they said if I don't respond to the vaccines then I would be considered for IVIG. Do you have any contact details for Dr Klimas @SOC please?
  26. S

    Vaccinations to boost immune system

    Sorry about that @minkeygirl
  27. S

    Vaccinations to boost immune system

    Hi, I just wondered if anyone has any useful advice on vaccinations for me. Basically I've had ME since I was 11, not long developed after having the meningitis C vaccine, also allergic to tetanus. I've been seeing a urogynae and immunologist most recently (I was dignosed with eds type 3...
  28. S

    Overactive immune system & vaccinations - advice

    Thank you so much for taking the time to help and reply to me I appreciate it :) I have severe PEM, I use a wheelchair everywhere when I am able to sit up but mostly spend my time in/on my bed. Any exertion I suffer for afterwards. I am allergic to the tetanus jab but the other vaccines he...
  29. S

    Overactive immune system & vaccinations - advice

    Thanks for explaining :) I don't know much about immune tests but I managed to get a copy so here we go... Sample date: 14.01.2014 TOTAL PROTEIN 71 g/L 63 - 83 ALBUMIN 46 g/L 34 - 50 GLOBULIN 25 g/L 19 - 35 25 OH Vitamin D *37 nmol/L 50 - 200 Serum Amyloid A *7.6 mg/l Less than 6.4...
  30. S

    Overactive immune system & vaccinations - advice

    Can I ask why it is a very ambiguous statement? He went through all of my results with me but I am very foggy and also have no clue about immunology, but I am awaiting a copy of my results, which I will post when I get them.