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

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  1. JES

    Abilify- Stanford Clinic Patients

    Found this: Conclusion: Amongst the SSRIs examined, only fluoxetine acutely increases extracellular concentrations of norepinephrine and dopamine as well as serotonin in prefrontal cortex, suggesting that fluoxetine is an atypical SSRI (reference). As the SSRI fluoxetine can inhibit dopamine...
  2. JES

    Be careful with low carb / keto diets

    My experience was a bit similar. Keto does work for some people long-term but they seem to be in the minority. My keto experiment ended shorter than a week. At first I felt improvement, which tends to happen when I switch things up as the ME/CFS state can be disrupted momentarily. What happened...
  3. JES

    Re : Norway Patent for ME/CFS treatment using Oxalate

    Getting off topic since this is a five year old thread about the use of a patent applied oxalate mixture for ME/CFS treatment. To my knowledge, nothing new from this Norwegian research has come out since 2018 and the main person involved with this was not a doctor. It would be interesting to...
  4. JES

    Not being able to get sick anymore

    This is the ArminLabs test I take it? I got positive from that one as well and many people seem to. Skeptics will claim those tests have not been validated for use, but equally every Lyme test on the market is somewhat inaccurate by the same logic. Then there is the whole issue of having...
  5. JES

    B-Vitamins Saving My Butt (what to do?)

    Yep. I always take one supplement at a time for a couple of weeks to properly evaluate its effect. Ideally this would be months, but life is too short. The dosages above are also rather high if I may add. Benfotiamine is indeed a known supplement used by diabetics. Benfotiamine is *probably*...
  6. JES

    Nicotine?

    Yeah, I have heard that as well. The patches I use don't seem to have anything leaking out of them as it's just one solid sticky material. I'm now leaning to believe the main reason most manufacturers advice against this is because they would lose almost half of their sale if let's say people...
  7. JES

    Is LDN really causing all of this?

    LDN is a well tolerated drug for healthy people. Remember that naltrexone is actually approved in a dosage of 50 mg for treating alcoholism and even at that dosage people seem to tolerate it rather well. Then of course us people with ME/CFS react to almost everything in a different way than a...
  8. JES

    Can High Strength Vitamin B1 trigger thryoid or other endo-related issues?

    You can't know for sure unless you do the lab tests and even then we only measure and know 0.1% or something like that about what is going on in the human body. B vitamins are often taken together as there was some common wisdom apparently that certain B vitamins alone could cause a deficiency...
  9. JES

    Why do I feel worse after resting?

    Probably the adrenaline yeah damping the immune response or something. I remember feeling horrible with POTS many years ago when I was supposed to have a presentation. I felt like I could barely stand before the presentation and was worried I wouldn't get through it, but when I started the...
  10. JES

    Jen brea. Interesting interview

    Cases... I'm more open to that. What is clear by now is that this CCI surgery, however, isn't some kind of magic fix and shouldn't probably be done at all by most people. If CCI worked we should have reports of full remissions, but we have none. We have some reports of partial remissions, which...
  11. JES

    Jen brea. Interesting interview

    On social media like everything else these days, but many groups were closed and the ones remaining are harder to find.
  12. JES

    Jen brea. Interesting interview

    Furthermore, if CCI was really the issue you would think just staying in a vertical position in bed rest would resolve or at least improve most symptoms. I haven't seen any evidence that head position is the aspect that makes ME/CFS worse rather than exercise itself.
  13. JES

    Jen brea. Interesting interview

    I'm none the wiser about the CCI outcome. This was a hugely debated topic on this and the other ME/CFS forum back in 2018. By now probably several hundred ME/CFS patients at least have had this operation done by one of the three neurosurgeons who were supposedly the only ones able or willing to...
  14. JES

    Nicotine?

    Yep, since the summer. The best effects wore off after a month or so, but I still kept using a 7 mg patch cut in half per day (3.5 mg). I think it helps me to a degree with brain fog and fatigue.
  15. JES

    [STUDY] Sodium Copper Chlorophyllin Is Highly Effective against Enterovirus (EV) A71 Infection by Blocking Its Entry into the Host Cell 2020

    Yep, this stuff is powerful. Took a fraction out of a 100 mg capsule and my body and gut reacted quite strongly to it. Could be a sign that it's worth to further look into this, but zero chance I'll get to a 500 mg "potentially antiviral" dosage range and even 100 mg seems like a reach. It's...
  16. JES

    [STUDY] Sodium Copper Chlorophyllin Is Highly Effective against Enterovirus (EV) A71 Infection by Blocking Its Entry into the Host Cell 2020

    Ordered the capsule version from Now Foods, let's see how it goes (noticed it includes alfalfa powder as well). If this acts as a strong antioxidant I won't be able to tolerate it as most antioxidants make my fatigue and flu-like symptoms worse. My supplement tolerance is anyhow quite bad...
  17. JES

    Nicotine?

    Yep, nicotine constricts the blood vessels. For certain type of dysautonomia or POTS it might help, for others it could make it worse. If you buy the patches, make sure you start with the lowest dose ones or cut them in half.
  18. JES

    Rewinding your biological age

    Hm so why haven't Janet and Ron tried this on Whitney? Ron is a geneticist so this is right up his alley.
  19. JES

    Rewinding your biological age

    We know it's not an age disease because ME/CFS onset, although a bit poorly documented, seems to most likely occur between ages 15 and 40. We also know that women are more likely to get ME/CFS. This points to it being more likely autoimmune than anything else. I have tried quite a few...
  20. JES

    Low dose abilify effects on anxiety

    Abilify is rather stimulating, so it has a chance to increase your anxiety, but individual response to drugs is often unpredictable and can be almost the opposite for ME/CFS patients for example than for a healthy person. Abilify increased my restlessness and reduced my sleeping hours. SSRI's...
  21. JES

    NIH meeting follow up: Let’s drop the “CFS” from ME / CFS

    This has been debated forever. Five years ago Ron Davis et al. suggested the name should be changed to SEID. Nothing became of it and I don't even think it was an improvement. If the name is changed it must be done everywhere in the world to be consistent. If that's not realistic I'm fine with...
  22. JES

    High Heartrate and anxiety after folic acid and Hydroxy-B12 Injections

    When you face a problem from a supplement, adding more of another supplement is very risky in my opinion. I tried this a few times and failed as the biochemistry is way too complicated to predict the response especially when you start "compensating" for one supplement with another. The only...
  23. JES

    What went wrong?

    Confusing thread. The people who count calories, have a keto diet or personal trainers are a small percentage of the population. They are not the ones who are overweight typically.
  24. JES

    Success from Probiotics

    Unless you want to dive deep into it, just buy a probiotic from the market shelf and see how it works like OP did. The thing is that 99% of probiotics that you find in most stores contain more or less the same mixture of lactobacillus (lactic acid) strains with a few bifidobacterium strains...
  25. JES

    Brivudine (Zostex, Mevir, Brivir)

    The only orally taken antiviral that is available here in Finland over the counter is acyclovir/valacyclovir since a couple of years ago. Wikipedia says: Brivudine is approved for use in a number of European countries including Austria, Belgium, Germany, Greece, Italy, Portugal, Spain and...
  26. JES

    Nicotine, tobacco and Cfs has anyone benefited?

    Interesting. FYI, I tried nicotine in form of patches over the summer and reported my experience in this thread. I can second that the uplift I got at the beginning was pretty impressive. After around a week the benefits peaked and I certainly felt much less mental or physical fatigue. The...
  27. JES

    Why was the Covid success from Honduras Censored?

    Honduras ranks 97th in least COVID deaths per million according to all countries ranked here. Not particularly impressive. The more likely real reason they did not have more deaths is their population demographic: median age is 24 while for example in Italy it's 48.
  28. JES

    Why i don't think there will be a cure for ME

    There are cures for many things. Vaccinate and you won't get polio (cure) among other things. Many previously deadly bacterial infections can be treated with a few weeks of antibiotics. Many forms of cancers can now be treated so well that patients have an almost normal life expectancy. Same...
  29. JES

    Why i don't think there will be a cure for ME

    If traditional medicine worked so well, why do western countries always rank on top in average life expectancy? Traditional medicine doesn't work equally well, at least not to find targeted treatments or cures for diseases like ME/CFS, otherwise we would have way more people cured over here with...
  30. JES

    If Lipoic Acid can recycle glutathione, why isn't everyone on it?

    I react badly to antioxidants. As mentioned, lipoic acid increases insulin sensitivity, which paradoxically ends up being a problem for ME/CFS patients who deal with hypoglycemia. Taking any proper dose of ALA I get massive carb craving followed by sleepiness.