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    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. F

    Effects of linaclotide and lubiprostone on restitution of epithelial cell barrier

    I'm reading this thread right now in awe of how quickly a laxative that improves gut barrier function was dismissed. Do you realize this is likely the only laxative of any type, natural or pharmaceutical, that has ever demonstrated this positive effect? Someone said it didn't do anything that...
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    Deplin so confused

    You certainly should be confused about deplin. Fact is, there are differing schools of thought when it comes to methylation treatments, and there is no certain answer. Some doctors and gurus do advocate very large doses of methylfolate and see success with it. Listen to both sides and decide...
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    Has vitamin K-2 (mk-4 or mk7) helped you ?

    I think some of the adverse effects people experience on high doses of K are not a sign of healing but simply a side effect. There is no combination of natural food sources which could exceed 1-2mg of MK-4 daily. Why wouldn't pharmacological doses cause side effects? Here's the official list...
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    Enteroviruses - revisited

    Has anyone tried higher doses of sodium selenite (400-600 mcg daily) for extended lengths of time (6+ months)? Selenium status seems to determine vulnerability to a wide range of viruses, and this particular form of selenium, sodium selenite, shuts down coxsackievirus B replication impressively...
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    How do you feel after you eat?

    Look into Small Intestinal Bacterial Overgrowth (SIBO) in addition to leaky gut.
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    Amisulpride — A Multipurpose Drug for ME/CFS

    Actually, it looks like maybe you can add aripiprazole to another antipsychotic and its partial d2 agonism is able to keep prolactin down. It isn't clear how that would affect the benefits of amisulpride though, seems to me if it can overpower the d2 antagonism of other antipsychotics at the...
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    Amisulpride — A Multipurpose Drug for ME/CFS

    Doesn't look like there is much hope for resolving sexual sides, aside from a switch to aripiprazole, which may or may not provide any of the same benefits:
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    Allergy / Mast cell treatments

    I am allergic to ragweed! I didn't realize chamomile was closely related and have never tried chamomile on its own. I wonder if that's responsible.
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    Allergy / Mast cell treatments

    I've tried allegra (fexofenadine) and zyrtec (cetirizine). I felt nothing out of the ordinary on allegra (almost could have been placebo), and felt moderately sedated on zyrtec. Neither of them helped any of my symptoms. However, at least they didn't make anything worse.
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    Allergy / Mast cell treatments

    Quercetin is an adenosine antagonist, like caffeine, and I believe that is responsible for the stimulation, agitation, and insomnia that people see in the beginning. If that's correct, then you should develop tolerance if you continue with a given dose, same as caffeine. Quercetin is also a COMT...
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    Allergy / Mast cell treatments

    It's my impression that quercetin and particularly quercetin chalcone has the best evidence for inhibiting human mast cell activation at concentrations that are achievable in vivo, compared to all "mast-cell stabilizing drugs" and other flavanoids as well (including luteolin). The free full...
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    Attacking Biofilms That Cause Chronic Infections

    It seems implausible to me that an orally-administered enzyme will reach a biofilm on the external surfaces of the sinuses in any significant quantity. Perhaps if it were dissolved in saline and administered with nasal irrigation, assuming that was tolerated.
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    Ketotifen for leaky gut

    I don't know for sure but the side effect profile looks like pure H1 antagonism to me (drowsiness, weight gain, irritability, dry mouth). If you look at a typical anticholinergic drug like diphenhydramine the list of sides is about 5x longer and includes scary cardiac stuff, urinary retention...
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    Ketotifen for leaky gut

    For anyone trying ketotifen, remember that it is an older antihistamine with good BBB penetration, unlike the newer drugs which are designed not to enter the brain. This means you're going to feel some sedation and impairment of cognition when you begin. I get really frustrated when this...
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    Ketotifen for leaky gut

    Also let me give you guys some better sources for ketotifen: http://www.buy-pharma.com/_-p-478.html https://www.alldaychemist.com/1203-ketasma-1mg-.html This next one is a research chem site that caters to bodybuilders so it's a bit shadier but they have a good reputation and I've...
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    Ketotifen for leaky gut

    I think we have some mastocytosis treatment guidelines influencing the dialogue here with the multi-drug antihistamine cocktails. Fact is, ketotifen alone is used to treat leaky gut (see: http://www.collegepharmacy.com/images/download/Woeller_Ketotifen_Protocol.pdf) and ketotifen alone is...
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    Broad spectrum options for an inflammed gut?

    Ketotifen is developing a reputation for resolving food sensitivities, leaky gut, and irritable bowel syndrome. Independently of all that, if you believe mast cells play a significant role in CFS pathology, ketotifen is the premier systemic and clinically proven mast cell stabilizer.
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    Mast Cell Activation Syndrome (MCAS) Primer for Physicians

    Judging from his (admittedly small) collection of case reports it does seem like tyrosine kinase inhibitors were the most successful treatment option. A single drug that prevents mast cell degranulation seems like an attractive alternative to complicated multi-drug regimens that block...
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    How Ketamine Defeats Chronic Depression

    I tried to sign up there as a member of their "religion" but I never received the test you're supposed to take to register. I've read elsewhere though that it's a reliable source.
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    Flu shot/vax and auto-immune & cfs issues

    I think your concerns are valid and I would not get the flu shot or any vaccination unless it was critically important or unavoidable, out of fear it would worsen my condition.
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    How Ketamine Defeats Chronic Depression

    Anyone lamenting the unavailability of ketamine might want to explore methoxetamine. It's available from various grey market sources online (just google "buy mxe"), not illegal to buy or possess, and its antidepressant efficacy is widely praised by users. It's very closely related to ketamine...
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    Anyone tried ketamine?

    Don't forget methoxetamine.
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    T4 Tx of Subclinical Hypothyroidism, Fatal&Nonfatal Cardiovascular events & Mortality

    I think the reason you see the age discrepancy is that in the elderly, subclinical hypothyroidism is actually pretty common and seems to be adaptive and associated with longevity. Not so in the younger crowd.
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    The Times: Vitamin D boost for all 'will treat national health shame' and CFS/ME

    The risk of excessive levels of 25OHD is underappreciated. In fact there is a U-curve, where both low and high 25OHD levels are associated with increased all-cause mortality rates (the most important bottom-line metric out there). Optimal levels from this perspective appear to be about...
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Petechiae are usually associated with thrombocytopenia (low platelet count). How many of you have low platelet counts? Mine is never dangerously low, but is typically below range (100-130 when normal is 140-400), and that is what I've attributed my petechiae to.
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    not sure where to post this..ignex testing for lyme..have seen post about it

    A false positive result from Igenex caused me to take ridiculous combinations of multiple antibiotics for over two years, with no positive effect on my health. In fact, the only effect they really had was to mess up my gut worse than it already was. Not a fan of alternative lyme testing at...
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    Weight Loss associated with ME/CFS

    It's no joke. If your lean mass drops low enough your risk of death from many causes, particularly fatal infections, increases dramatically. Oxandrolone is typically used and does not produce androgenic effects in women at low/moderate doses.
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    Weight Loss associated with ME/CFS

    Copious amounts of protein progressive resistance exercise (should not cause PEM like aerobic exercise if you are careful) may consider anabolic steroids, which are used for wasting in HIV infection and cancer may consider following a "leaky gut" protocol to improve digestion and absorption of...
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    T3 sounds surprisingly effective -- is it?

    I've noticed alot of people mentioning positive results with T3, and it's second only to LDN on curetogether's CFS treatment survey for medical treatments. I have some questions for those experienced with it (this refers to T3-only, not T4 or dessicated thyroid): Did you have lab evidence...
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    Raising glutathione levels with Whey Protein - why it might not have worked for you.

    This might be sacrilegious to some but I do pretty well on standard whey protein isolate, your basic bulk-quantity, economical product targeted to bodybuilders. I'm more than a little skeptical of supposed baby-glove treatment of whey protein and the ensuing 1000% price markup.