• 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.

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  1. LisaGoddard

    Help finding B12 sources please!

    Thanks for this suggestion. But I did try the cyanocobalamin at the start of my methylation and found it made me quite ill after a while.
  2. LisaGoddard

    Help finding B12 sources please!

    Hi Jadzhia, I realised recently that Dr Myhill no longer sells the B12 spray (for use on the body). As it was, I've had some negative reactions with it. It caused skin itching. And I also had some leaked blood vessels - I think the additive DMSO has blood thinning properties (though I am...
  3. LisaGoddard

    Help finding B12 sources please!

    It's so great that we can share alternatives. I felt at a loss on how to replace my sublingual tablets with something that works. I haven't made the transition yet as I had a nasty norovirus 🤢 Finally feeling a bit more 'normal'. I bought Nature's life B12 and will start it tomorrow...
  4. LisaGoddard

    Help finding B12 sources please!

    So sorry to hear the oils might not be available soon!! I've found that I get some itching with the spray b12 from Dr Myhill so would have loved to try the oils.
  5. LisaGoddard

    Help finding B12 sources please!

    Thanks Mary. Amazon.com is saying unavailable! But I can get the bluebonnet from iherb. I also found this one https://uk.iherb.com/pr/nature-s-life-b-12-drops-sugar-free-wild-berry-5-000-mcg-2-fl-oz-60-ml/86395
  6. LisaGoddard

    Help finding B12 sources please!

    Jadzhia, Thanks for the suggestion. I will order from Australia if I need to. I wondered if you tried Dr Myhill's transdermal b12? https://www.salesatdrmyhill.co.uk/transdermal-b12-spray-50ml-48-p.asp I noticed there were patches available on amazon.co.uk but with mixed reviews
  7. LisaGoddard

    Help finding B12 sources please!

    Mary, Could you let me know the brand names of the liquid B12s you use, please? I guess you just squirt them in your mouth and keep it there as long as possible? I am a total novice at any forms of B12 other than sublingual tablets.
  8. LisaGoddard

    Help finding B12 sources please!

    Thanks so much! I am sorry that I am so late in replying. I had some appointments just before Christmas and I crashed out. Thanks so very much for these suggestions! I will follow them up. Apart from the injections which I did try but they did not help at all (I think they were the hydroxy...
  9. LisaGoddard

    Hypermobility and cervical collars - any experience?

    I'm just out of my cold bath😰 So while you manage your lymph node with heat, I use cold. I use a plastic foldable tub that I bought online (it is actually for hot baths but I fill with cold water). If you don't have access to a bath now, I wonder if that would be useful for you? This is the one...
  10. LisaGoddard

    Help finding B12 sources please!

    PS I live in the UK although I do sometimes manage to order products from overseas
  11. LisaGoddard

    Help finding B12 sources please!

    Please let me know what methylcobalamin products you've found useful. I have been taking 10 sublingual Solgar methylcobalamin 5000 mcg daily. Yes, that is a huge amount! But I struggle if I don't have such a high dose. It seems Solgar have recently stopped making the 5000 mcg B12. So I am at a...
  12. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Hi, I crashed out really badly which is why I am so late replying. I am so sorry to hear about the lymphoma!!! That will exhaust you. You are amazing to keep smiling. I know how hard that can be when you are exhausted. Surely there is some treatment or therapeutics that can help? I take cold...
  13. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Hi, Just back from the appointment and pretty exhausted, but I wanted to share. It didn't start well as the consultant asked what can he could do for me, and I said that I have hyperflexibility and wondered if that had affected my health. He said casually 'Probably not'. (Deep breathe, remain...
  14. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Feeling calm at present - thanks for prayers and thoughts. Really good to have the community support. Will let you know how it goes!
  15. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Thanks so much, Judee. I have never heard of kinesio tape before - that sounds wonderful! Thanks so much for sharing that.
  16. LisaGoddard

    Hypermobility and cervical collars - any experience?

    You have lymphoma! I am so sorry to hear that. I am still hoping that you meant lymphodema (build of lymph fluids) and not the cancer. I know people with ME can get both. Let me know please because I will thinking of you. The first few times I did the lymphatic self-drainage I didn't hear...
  17. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Hi Rufous, My collar is actually softer looking than the one you posted. See the one I bought https://www.amazon.co.uk/dp/B004GJZ7SQ?ref=ppx_yo2ov_dt_b_product_details&th=1 I bought a cheap one because I thought it was absolutely unlikely to have any effect so not worth spending much. I don't...
  18. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Just an hour before my husband takes me for my appointment. Thanks so much for the supporting words. Sorry about the delayed response (time difference as I'm in the UK). So appreciate your comments.
  19. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Thanks Rufous. My collar is stiff foam and velcro. A cheap one I could get from Amazon. Yes, the first time I tried it I compressed my throat too much. You mention lymphatics which is interesting.A few months ago I started doing self lymphatic drainage which has been helpful and I can hear the...
  20. LisaGoddard

    Hypermobility and cervical collars - any experience?

    Having been housebound with ME/CFS for over twenty years, I was recently diagnosed with autism and I now have hypermobility assessment tomorrow! I have always been hyperflexible and at the grand age of nearly 60 I can still lots of weird things with my joints and limbs (despite absolutely...
  21. LisaGoddard

    Hormones, HRT and Estriol

    Sorry I haven't been online. I used an estriol cream from Life-flo which I purchased from iHerb without prescription. My HRT and estriol experience was a while ago, and I had to stop using it. I think (but can't quite remember now) that it was causing lymph node pain and flu feeling - which I...
  22. LisaGoddard

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Latest update on sirolimus/rapamycin/rapamune: I increased the dose but the lymph node pain and fatigue flared up badly afterwards. So, I am back to cold baths and using ice packs to calm down my immune system. Very sadly, I think my experiment with rapamycin is at an end. Possible reasons it...
  23. LisaGoddard

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    My own experience with Rapamune/Sirolimus. I started a few weeks back and would just like to share progress. Background: I've been housebound with ME/CFS for the past 13 years (diagnosed 2002). My main symptoms: fatigue, brain fog and sore lymph nodes (groin, under arms, and occassionally...
  24. LisaGoddard

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    I've joined but can't find the site?? not good at tech so don't know what I am doing to be honest
  25. LisaGoddard

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Hi, Thanks for the encouragement Stretch. They have been great. I've just received one order and I'm about to place a bigger order (more expensive) so hoping it won't be a problem with entrance into the UK? Have you had any problems? Thanks again
  26. LisaGoddard

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Hi, I'm in the UK and planning to use InHouse Pharmacy - does anyone have any experience. I will need to give them bank details so I'm hesitating... Any advice please. Thanks!
  27. LisaGoddard

    Hormones, HRT and Estriol

    That's i That's interesting. I did ask my doctor about trying Tibolone but they didn't take me up. Did you find that it helped in terms of your ME, or your skin, or both?? Let me. I have a phone appointment with my doctor today.
  28. LisaGoddard

    Hormones, HRT and Estriol

    Does anyone have experience of the effect of HRT hormones on their ME? I stopped my HRT medication (Femoston conti) earlier in the year because it was causing facial cysts. I found amazingly that my ME/CFS improved When I tried other oestrogen-progesterone HRT combinations, or estradiol...
  29. LisaGoddard

    Active B12 Protocol Basics

    Re Pibee. The things B12 does amazes me. It sorted out my social phobia (which high antipressants couldn't touch) and sorts out my pain. I don't know anything, however, about its effect on the circadian. I have to take Mirtazipine to sleep but did notice that B12 at night does help. I know how...
  30. LisaGoddard

    Endogenous Viruses

    Thanks! Good to know this. Pity that Huber doesn't appear to be doing any research now.