• 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. C

    Did treating sibo have any effect on your ME

    Most of what you describe can be explained by your stomach function. dauer? Does that mean parasites? If so hypochlorhydria is highly likely IMO. That allows parasites, their eggs and bacteria to survive and get into the small intestine potentially causing problems further down including SIBO...
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    Inverse vaccine shown to reverse autoimmune diseases like multiple sclerosis and type 1 diabetes

    I do not like the sound of this TBH. This will not reverse T1 diabetes because it cannot repair the already destroyed pancreatic beta cells. Science is no where close to doing this because it barely knows it's arse from it's elbow. This will also not change the high LPS levels in T1 diabetes...
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    A seemingly unexplored simple explanation for ME/CFS and my experiments with it

    Bonus points if you manage to spot the glaring error.
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    A seemingly unexplored simple explanation for ME/CFS and my experiments with it

    Hulda Clark was a quack who was pre-occupied with parasites. There is a book by Moises Velasquez-Manoff who claims that parasites are needed by the body and it is their absence which causes allergies and autoimmunity. It's called "An Epidemic Of Absence". I cannot think why I wasted money on...
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    Not being able to get sick anymore

    Do you have any idea how long ago that you were bitten by a tick? If it has been about over a month then it will probably be chronic and they will be firmly entrenched in your system which makes them considerably harder to eradicate. There are different treatments available including herbal...
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    Methylene Blue -- The "Perfect Supplement" For ME/CFS (?)

    If anyone gives this a try then you can write off yet another antimicrobials on top of all the other antimicrobials made totally ineffective against the pathogens that cause ME/Fibro. You could be digging yourself into a hole that you may never get out of! I can 100% guarantee that biofilm...
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    The moderator of Reddit r/cfsme & r/mecfs pushes CBT and brain retraining and GET and bans you if you say something about it.

    What you say sound a lot like my experience of him. The mod banned me because of what I said. I was busy trying to find something that I needed which was proving difficult to find and in the meantime he banned me. I didn't have time to reply to my post. I am not wasting me time on these people...
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    Supplement to support kidney

    There are different types of Cordyceps and a general recommendation about it being beneficial to the kidneys is not warranted IMO. Cordyceps Sinensis, Cordyceps CS-4 and Cordyceps Militaris all have different constituent levels. http://www.realmushrooms.com/cordyceps-supplements-guide/...
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    Comment by 'Carl' in 'Hurt all over! And Tired! - 6 weeks covid'

    Increase your Zinc. If you can get some Cordyceps then it might help, it did me when I got Delta variant. Cordyceps Militaris is the strongest but I would avoid that type because it can cause problems because it is a strong COX-2 inhibitor with similar damaging effects. That is because the...
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    People in the UK: Petition for Funding for Research/Cures/Treatments for ME/CFS and Long COVID

    BTW It's not my Petition, someone posted it on another forum so I wanted to give it a little help and get it some signatures.
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    People in the UK: Petition for Funding for Research/Cures/Treatments for ME/CFS and Long COVID

    There is a petition on petition.parliament.uk for funding for ME/CFS and Long COVID research and treatments which needs as many signatures as possible. It closes on 5th July 2023 therefore if you live in the UK or know someone who does then please sign the petition and ask anyone that you know...
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    Twitter thread re nattokinase survey for persons with ME/CFS and LC, by LongCovidPharmaD (Pw/ME)

    Rutin is meant to be very helpful in preventing clotting problems. There are many articles on it relating to clotting reactions. Inflammation tends to promote clotting as it also does in COVID-19. That might be why CFS sufferers are prone to clotting. However my blood clotting has always been...
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    Anyone has experience with Pure NAD+ powder (Not NAD Boosters like NMN and NR)

    Not tried it TBH but the first one that you linked is available to people in the UK and EU, separate sites BTW. It's £49.95 for 12 grams and £89.95 for 24 grams with free DPD delivery. It's € 54,95 for the 12 gram version and they don't currently have the 24 gram variety. Delivery is extra for...
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    Is there any infections that can last over 25 years?

    Biofilm protected pathogens can persist for decades. The pathogens which cause my CFS have survived for 40 years and nothing, including prescribed antibiotics have ever destroyed them. A multi layered biofilm gives the pathogens multiple opportunities to adapt to anything which harms them. I...
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    Diagnosed Cervical Instability

    I get neck pain when my body has insufficient magnesium. Taking a large dose, 1200mg+ of magnesium eliminates any pain and discomfort. I used to take around 2 grams at a time but cannot do that now because of health issues. Also Glycine is a semi essential amino acid which is involved in so...
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    Potassium

    Supplementation does seem to increase the uptake and need for potassium. I get very thirsty when I need potassium and the only thing which will quench my thirst is potassium supplementation. I have noticed that any amino acid supplementation also dramatically increases my potassium requirement...
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    CFS is not an auto-immune disorder

    You misunderstand what is actually happening in your body. Autoimmunity is a combination of things, altered digestive permeability and altered nervous system function ie degradation. Both together cause autoimmunity to show. You clearly only have the Increased Digestive Permeability without...
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    Niacin for Overmethylation

    Niacin, I used niacinamide, does help to reduce overmethylation because I have used it on the few occasions that I have taken too much B12, folate and TMG. Taking too much TMG too frequently makes my hyper and a little shaky which is not normal for me because another herb I take takes care of...
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    Thiamine, vitamin B1, is it a cure?

    I have been taking Benfotiamine for a very long time, many years, probably over 10 at doses of 600mg and now 500mg/day. I take it for it's benefit to AGE (Advanced Glycation End products). It is difficult to say if there is any help to my ME seeing as another treatment virtually eliminates most...
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    SIBO treatment

    Be aware that any antimicrobials that you take will make the pathogens which are causing your CFS/ME/Fibro more resistant. That will reduce the number of antimicrobial choices that can be used to destroy them. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/ The same goes for any herbal...
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    My plan for surviving covid, plus vaccine dillemmas

    I am sorry but I am in the UK so it's probably best if you find a good source in your country. The following site has a very good guide on Cordyceps. They do also sell it but the prices look quite high. The last Cordyceps I purchased was £30.39 for 150g usually £37.99. The US site sells them in...
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    Growing mutaflor - by Sarah Myhill

    I haven't [have EDIT: got this wrong in haste] made yoghurt using these bacteria but I used to make lots of yoghurt using various types of bacterial/yeast (Saccharomyces boulardii) capsules as a starter. I used skimmed milk powder as the base mixed to a higher than stated ratio of milk powder to...
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    My plan for surviving covid, plus vaccine dillemmas

    I suggest that you take a look at the following site for info on treating COVID-19. I used it when I got the virus in June 2020 when a phone doctor wanted to send an ambulance because I was developing breathing difficulties. I refused an ambulance because I would of most likely died. I started...
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    Has anyone heard of blood autovaccines to cure Lyme or ME/CFS?

    Clearly you have not read Daniel Vipond's research. https://ueaeprints.uea.ac.uk/id/eprint/70522/ I can assure you that it is a pathogenic micro-organism in the digestive system which causes the increase in the digestive permeability which causes the inflammation and autoimmunity, histamine...
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    Has anyone heard of blood autovaccines to cure Lyme or ME/CFS?

    The ME/CFS infection is not in the blood, it's where the immune system cannot get at it because it's hidden by a biofilm in the digestive system. Plus the pathogen(s) can be any one of a 1000+ micro-organisms. If a vaccine would work, which I don't believe it can, can you expect to make a...
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    Compression Stockings for Low Blood Pressure

    Have you ever tried mouth wash? https://www.medicalnewstoday.com/articles/159283
  27. C

    Body Don‘t absorbs any food anymore/ digestion shuts down

    Constipation can be caused or promoted by a number of things. A lack of acetylcholine will promote constipation because the nerve impulses to the bowel will be reduced. Promoting acetylcholine production might be worth trying. I supplement with Choline and acetyl groups from acetyl-carnitine...
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    Body Don‘t absorbs any food anymore/ digestion shuts down

    It might not as easy as that and could be counterproductive IMO. If Lala has a urease positive infection then adding more hydrochloric acid in the form of capsules or tablets, tablets are a bad idea anyway if digestion is very weak, will increase the release of urease and will increase ammonia...
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    Recent Bullseye, prescribed doxy - it is the best abx for the job?

    I cannot give advice about antibiotics but I can offer some advice on what not to do that could affect you in future. I would go with whatever you have used before and avoid anything which you have not already swallowed. That is because the pathogen which causes ME will adapt to anything that...
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    Sleep and Stress test results came back (cortisone, cortisol, melatonin). Trouble reading them.

    Blood histamine is an important component in sleep problems because it is elevated by the pathogens that cause ME. Abnormal cortisol output would be expected in ME/Fibro IMO. High at night when it is meant to be low. It's all reversed in ME. I had a short Synacthen test for Cortisol and was...