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

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  1. C

    7 Day NAD+ Infusions (Severe ME/CFS Recovery, Neurological / Mitochondrial / Genetic Repair) + POLL

    FWIW I benefit from sublingual NMN in terms of moving the needle; 2-3% improvement in energy/strength/mental clarity. But do not benefit from any other form of oral NAD, except flush Niacin 10x 16mg a day = 1x 500mg nmn lozenge benefits. So the latter is easier. Looking into nasal...
  2. C

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    https://pubmed.ncbi.nlm.nih.gov/26613326/ Reliable disease biomarkers characterizing and identifying electrohypersensitivity and multiple chemical sensitivity as two etiopathogenic aspects of a unique pathological disorder
  3. C

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    I have ME/Lyme/Bartonella and I got EMF sensitivity after trying high dose probiotics which I think triggered more Histamine and autoimmunity. There is a paper on how those as well as oxidative stress cause Electrohypersensitivity. I haven't found many solutions in 5 years but I use a...
  4. C

    Need help with Mattress saga

    Thanks for the replies everyone, at least I know I am not alone in this problem. Unfortunately I did not keep my old mattress as it was part of the collection to have it taken away. I think my current one will work eventually but this breaking in process is very hard going on a PWME, Its quite...
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    Need help with Mattress saga

    I never could have anticipated what a saga this would be when I decided to upgrade my old wonky mattress last October. For context, I am not Bedbound, I am homebound mostly but spend a lot of time sitting/lying, however I move once an hour atleast. I was recovering with various things like...
  6. C

    My experience on plasmalogens

    I'm in the UK and using a brand that is sold at the chemist here called Immutone - I quite like the fact that it's regulated by the chemist online. 1000mg dose in one capsule, I may go to 2 caps soon (1-2 a day guidance). @Methyl90 Yes I have been on Tocotrienols as advised by M.E. Specialist...
  7. C

    My experience on plasmalogens

    Just a quick report back FWIW, I am getting the same positive effects from Shark Liver Oil as from ProdromeGlia. Those being a marginal improvement of a few % including sense of brain returning to normal and sense of self coming back, i.e. More clarity and better mood. Hence then slightly...
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    My experience on plasmalogens

    Just want to say, I brought up Shark Liver Oil in the hope that someone brainier than me could confirm whether it could provide the same Plasmalogen pre cursor Alkylglycerols as something like Prodrome. It wasn't a suggestion or advice to go for it. Just got clarity
  9. C

    My experience on plasmalogens

    I've also been using Prodrome Glia for about a week or so, just at maintenance dose (as I can't afford the steep loading dose + maintenance dose cost) but I haven't definitely noticed a bit of an improvement - hard to explain how but just feel a bit more like my old self and when something is...
  10. C

    ATP working well for me.

    So far in my experiment with Swanson Peak ATP i.e. adenosine triphosphate disodium salt:- I consistently find that for the first hour or two that I don't feel anything. But then I start to feel a nervous energy and my HR resting goes up from a comfortable 65-70bpm to 80-85bpm. But also my...
  11. C

    ATP working well for me.

    It seems to be extremely hard to get hold of Swanson Peak ATP or Douglas Labs ATP20 or any other form of subingual ATP in the UK or europe. I ordered some from the USA to UK and it still hasn't been dispatched after 2 weeks.
  12. C

    Polyrhachis Ant Extract - Does it help?

    I've been experimenting with this and have found a slight raise in libido - which has to be a good thing. But also find my brain can be more overstimulated at night.
  13. C

    Peptides Poll

    Exogenous human Peptides have been on the periphery of my consciousness/interest for some time but after following @Nootbro on Twitter (who I believe had "CFS" before experimenting with peptides) has spiked my interest. I'm currently prioritising Nasal and Oral routes, as even though I am...
  14. C

    Salubrinal?

    Pterostilbene is a natural compound in Japanese Knotweed that works in the same way as Salubrinal, apparently.
  15. C

    Movies and Documentaries about ME

    The Lost King (2022)...
  16. C

    Cause of herx from grapefruit seed extract spray?

    I always Herx from Xlear nasal spray. I have lyme, bartonella, mycoplasma, potentially mold issues too.
  17. C

    Herbal alternative to the CCR5 antagonist Maraviroc

    "Used in herbal medicine, sanguisorba is called Di Yu in Traditional Chinese Medicine, where the leaves and roots are both used in preparing herbal medicines. 1,2 Sanguisorba Health Uses and Health Benefits Sanguisorba has several traditional uses, including helping to stop bleeding by boosting...
  18. C

    Multiple binders

    I've just been trialling Glucommanan for a few days, primarily for Weight loss but also gut health and cholesterol. I could feel the anxiety/discomfort I've had since Cov. ramping up until last night had trouble staying asleep but also horrible nightmares when I did manage to get to sleep. I...
  19. C

    Out of Control Weight gain

    Thanks for replying, I should really have added some more key context: 1) I was already weaning off these medications anyway and transitioning to natural alternatives that are working. 2) my cholesterol is only just above range but still quite high for my age. Am using Niacin to keep it under...
  20. C

    Out of Control Weight gain

    Since my first Cov infection in 2020, which caused my M.E. To be slightly worse, I started gaining weight. And then after second infection in 2021, which caused bad long Covid symptoms for over a year, only just improving in the last 4 months - I rapidly gained weight - going from 75kg to now...
  21. C

    Alpha GPC, Huperzine A, UM PEA

    I have been experimenting with Alpha GPC, PEA-UM and Huperzine A separately and have experienced benefits from them all - namely clearer mental clarity and incremental energy improvement, but I want to continue them all for different purposes. Does anyone know whether it's ok to stack these as...
  22. C

    Is there a good B complex supplement that helps, esp. with neurotransmitters ?

    I can second this, the only B complex out of many I've tried that makes a bit of difference
  23. C

    Cold showers !

    I've been doing Cold showers for about 6 years. Got M.E. In 2016, and started in 2017. The reason I continue to Do it is because it does help as a painkiller, a fog clearer, and general wake up helper. But it's by no means curative or near putting me into remission. For example on a daily basis...
  24. C

    Doxycycline as a CCI treatment: low-dose doxycycline inhibits the MMP enzymes which break down collagen and elastin in ligaments

    I have just started Periostat 2x20mg a day on the recommendation of an M.E. specialist in Europe, primarily for Neuroinflammation/Microglia but it seems like a good fit for me also as I have recurring UTI + Lyme, Bartonella, Mycoplasma, Coxsackie etc. So hoping that it provides a constant...
  25. C

    High TgAb, Low TSH, High T3 & T4

    I wonder if anyone could help shed some light on what might be going on with my Thyroid at the moment? I have not been on any medication for 2 years since being overmedicated and having a medical emergency for Thyroid storm. Since then I managed to use nutritional techniques to balance the...
  26. C

    Turkesterone?

    https://draxe.com/nutrition/turkesterone-supplement/ Benefits When it comes to putting on lean muscle mass and building strength, how good is turkesterone? Here’s what research tells us about its potential benefits: 1. May Help You Put on Muscle Mass There’s evidence that turkesterone can help...
  27. C

    Going to another country for treatment

    Mehlsen Klinik in Copenhagen would be closest to you.
  28. C

    Carnivore Diet recovery success stories on YouTube

    FWIW, I do a lot better on a high protein/meat diet, specifically red meat - beef, lamb, venison, duck (£$€). I originally tried to go Carnivore after a year of Keto adaptation, but quickly encountered gallbladder issues that I couldnt circumnavigate (may be genetic issues), then Keto after 2...
  29. C

    Sleep problems after active multivitamin complex but passive complex is fine

    There is too much going on in this supplement. I would personally have issues with Glutamine, EGCg, quercetin in relation to being wired and sleep issues
  30. C

    Fragmented sleep - too many dreams, not enough deep

    I get to sleep Okay but wake up at 4/5am after very long dreams thinking it would be morning. Then it can take between 10-60mins to Get back to sleep and it's a very groggy half sleep with more dreams but little deep sleep. I've had M.E. 6 years and it's always been somewhat like this but since...