• 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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Search results

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    taurine for MCS?

    Oh. Just saw the post. Thats why I can't tolerate taurine...I can't tolerate sulphur.
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    taurine for MCS?

    Taurine gave me migraines. My mcs is preventing me from using any of the methylations supplements. I am about to attempt them in minute quantities and hope they don't send me beserk (neuroexcitation).
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    D-ribose Teitelbaum study on 257 CFS/FM patients

    D-ribose is very helpful to me. I've been severely ill for 30 years and then 6 years ago became bedridden 23.5 hrs a day. A year ago I began taking d-ribose 2 teaspoons daily and after 2 weeks I was able to be out of bed many hours more a day...now up to 6 hrs a day out of bed. Its the only...
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    Help! Symptoms are driving me crazy!

    Glutamine is probably fine for those who are not sensitive to amines. I took glutamine and it made me sick. The natural and added chemicals in food such amines, salycilates, bezoates etc: can make sensitive people intolerably ill. See www.fedup.com.au. Hope you find what is making you react...
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    Help! Symptoms are driving me crazy!

    Hi Ivana Glutamine and chocolate are both extremely high in a natural chemical called 'amines' and cause huge cytokine storms for me. Glutamine is incredibly toxic for me and many with ME/CFS. Chocolate takes a couple of days to have a bad effect but the migraines, depression pain nausea are...
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    Problems with Acetyl L-Carnitine?

    Hi. I reacted badly to tiny doses of l carnitine fumurate and to acetyl carnitine. Wired and ill. Coq10 had a similar effect.
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    Is there any evidence that deconditioning alone causes pain and fatigue?

    In my case I believe that going to bed for 6 weeks when I first contracted ME/CFS did indeed cause deconditioning of my muscles. I wish I hadn't been told to go to bed and do nothing. As far as one is able to move around with this without causing a crash one should. ^ years ago I came down with...
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    Methylation.... anyone experience anger or agitation?

    Yes I had horrible start up nervous tension and also buzzing, and after 6 weeks had to stop the methylation meds as it was unbearable. It also triggered off intense food hunger and I put on 12 kilos in weight. It is now 12 months later and the tension is still there a little bit. I would like...
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    Bronchitis

    essential oils for bronchitis Kurt which essential oils do you use for respiratory infections? And what is the MMS?
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    Bronchitis

    I too have bronchitis attacks every year. I have had it for 6 weeks now and was in hospital for 4 days. Thay didn't give me antibiotics because they said it was a viral infection.I don't have a productive cough just a dry one. So for me I have to just endure it...it can take up to 12 weeks for...
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    shocked by what hubby and counselor said at my vist and sad : ( any advice?

    I'm sorry you had this experience with the counsellor Hurtingallthetime. Maybe you could forgive your husband for his outburst. Perhaps he was just letting his frustration out about this illness. My husband too someimtes shocks me with his non understanding of my illness yet mostly he does...
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    Love Is Here

    Thank you for writing my story. I'm one who hasn't the voice. xxx
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    A $5,000 Win for ME/CFS Australia (Victoria)!

    That is great news!
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    Anyone experience tremors?

    Some of my tremors in the past have been a medication side effect, especially antidepressants, and rivotril gve me restless legs.
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    Difficulty tolerating L-carnitine fumarate

    I can't take either of the L-Carnitines because of huge chemical response. Wish I could take it.
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    Cervical Neuro-Muscular Syndrome (CNMS) study and ME/CFS

    MY neck was whiplashed two days before all the cfs/oi symptoms started. I feel like going to live in Japan for a couple of months to get fixed. Its probably too good to be true though (sigh). Anne
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    B12 causing food cravings

    Interesting responses to my query, thanks. Fredd's info on the nutrients in meat is useful and maybe why eating meat helps even though I can't tolerate supplements of those things. Crux pottassium suplements hurt my stomach but maybe a potassium salt substitute may help? Chilove how do you...
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    BLACK MOLD - anyone know about it?

    Hi snowathlete Just a thought for you. I found that after I bought a heated towel rail, it kept the bathroom warm and dry and no more mould. Anne
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    symptoms disappear when I get my period or a Cold

    cortisol has nothiing to do with my feeling better when I get a cold. I have addisons disease (adrenal glands don't produce any) and the only cortisol I have is what I take in my meds every day. I think it is an immune system factor.
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    B12 causing food cravings

    12 months ago I began Rich's methylation protocol and within days of starting the perque sublingual hydroxycobalamin I got neuro excitation and with it huge food cravings. After 2 months the excitation (nerve buzzing and tension) was so extreme I stopped taking the B12 but even now 12 months...
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    Fried patato and meat diet

    I know what its like to like a diet of meat and potatoes, and add in peeled ripe pears. Finding out about natural and added chemicals in food has been a life saver for me. Here in australia our dieticians are trained in food chemical intolerance. See www.fedup.com.au cheers.
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    symptoms disappear when I get my period or a Cold

    yes. I have much more energy and less pain when I am coming down with a cold or flu. However when the initial infection is past I am then left much worse off than before with my immune system cycling weekly symptoms until 12 weeks later when I revert back to my pre infection but still horrible...
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    My 6yr old with ME/CFS on youtube

    Boris you are a great kid and very brave. I hope you get well soon. Anne
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    Rich Vank's Simplified Methylation Protocol Poll

    I have decided to stop the protocol for a couple of days as I feel pretty dreadful. I have only worked my way up to 1/2 perque and 1/8th actifolate daily over 6 weeks and haven't even begun the intrinsic b12 yet. The brain and body buzzing and pressure on head neck and chest is extreme as well...
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    Why does this illness keep bringing up "bad stuff" to the surface of the mind?

    This is a very interesting thread. I've often wondered about brain 'patterns' with these recurring regretful shameful type memories. I think though that If bad memories flooding back when I am ill means that I am healing, then after 30 years of it happening I would expect to see some positive...
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    Why does this illness keep bringing up "bad stuff" to the surface of the mind?

    Hi Silverblade. This thing of bad memories surfacing over and over again (but for me especially when feeling more ill or painy or headachey) is very annoying and potentially depressing and soul affecting to me. I don't really know why it happens but when it does I think 'Oh! No! here it is...