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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. godlovesatrier

    Insomnia from valacyclovir

    I've definitely heard of valac giving people anxiety and I'm sure insomnia as well. But it's just super rare. Here are the list of sides I had with generics: crippling fatigue and malaise, sore throat, headache, terrible shooting pain down my left leg and up into my hip, severe brainfog...
  2. godlovesatrier

    Prusty talks about his upcoming research on a podcast

    Sorry you went through this but thanks for sharing the information. Hope you are able to recover ok.
  3. godlovesatrier

    Insomnia from valacyclovir

    A small subset of people get insomnia from antivirals. For me TAF and Famvir gave me insomnia, but only indian generic valtrex gave me horrendous side effects. When i bought valtrex from uk pharmacies (with script) I didn't have almost any side effects. To be clear valtrex does not give me...
  4. godlovesatrier

    Have you had the Novavax vaccination and has it prevented Long Covid?

    I took high dose vitamin D and zinc and took molnupivarir which did not prevent long covid. Boosters do help Linus because they bring broad neutralising antibodies back up to very high levels. Actually a booster after infection gives you superior levels of protection. Anyway you need to read...
  5. godlovesatrier

    Have you had the Novavax vaccination and has it prevented Long Covid?

    I'm taking those Linus but I still have long covid symptoms. Natto seemed to get rid of neck and shoulder pain but that was it. According to the latest studies tachychardic which is my worst long COVID symptom is caused by hypoxia. To be honest I think triple therapy would be a better option...
  6. godlovesatrier

    Have you had the Novavax vaccination and has it prevented Long Covid?

    I've had az, pfizer and moderna and I still have LC at 90 days. It's mild though but it is a major difference to pre covid. I'll be getting novovax next. Metformin is prob better for prevention.
  7. godlovesatrier

    Stress induced epstein barr re-activation [STUDY] 2021

    My god if feel the effects of valac within an hour too! Although for my ebv acute reactivation it doesn't respond just to valtrex becuase it's hijacked the mineral and gluco corticoid system. So the only way to supress that is a hit to that system with dhea or hydrocortisone. I prefer dhea as no...
  8. godlovesatrier

    Stress induced epstein barr re-activation [STUDY] 2021

    Thanks for your reply. This is really interesting to be honest because I was just about to start TDF, although mainly for covid not as much for ebv, but you're saying it didn't work that well? I don't do well on high doses of valtrex sadly or if I did I'd prob do better. But I was going to...
  9. godlovesatrier

    Stress induced epstein barr re-activation [STUDY] 2021

    I take valtrex for ebv. Nac just lowers ros. Same with r-ala. Dhea and valtrex and possibly low dose hydrocortisone are the only things that have touched ebv. Nothing else really worked or was so tepid that it wasn't moving the needle. Basically you have to take all 3. I'd also say that life...
  10. godlovesatrier

    Insomnia Rant Part Two/Phosphatidylserine

    Wow that is a combo 😂 Thanks for replying. The valium really helps huh? I've got valerian root 800mg extract (allows me to get back to sleep), melatonin 1mg but I've been reading about higher doses (gets me to sleep). Then diphenhydramine 25mg for sleep but that stuff builds tolerance very...
  11. godlovesatrier

    Covid day 75

    Well since my last few updates I started to suffer from exhaustion and extreme tiredness by about Thursday into Friday. I had to take Fridays off work temporarily. I've probably done that for six weeks to help myself out. I think that running out of max dose lactoferrin, not having taken any...
  12. godlovesatrier

    Insomnia Rant Part Two/Phosphatidylserine

    Hey @heapsreal What are you taking for sleep these days? I'll try to find the message you sent me with it in as well.
  13. godlovesatrier

    Lots of long COVID patients reporting major improvements with lactoferrin

    Yeah I'm dubious about that brand. But the phosphydcholine makes me hyper and it takes me weeks to get used to it. Life extensions expensive but worthit.
  14. godlovesatrier

    Lots of long COVID patients reporting major improvements with lactoferrin

    I ran out of this for awhile and took 300mg a day for about 10 to 14 days and have been struggling with energy now for abotu 3 weeks. The two may not be related but I took 1200mg today as I bought more (£50 a bottle!!) and my neck and shoulder pain came back but I think I do have a bit more...
  15. godlovesatrier

    low dose hydrocortisone without impairing immune response

    Yes I found it has worked for lung inflammation brought on by allergies Inc long covid lung inflammation. Doesn't work if I have a bad cold have to use my inhaler for that. And the fatigue and brainfog that I normally experience from birch pollen isn't there. Now I do put that down to the...
  16. godlovesatrier

    low dose hydrocortisone without impairing immune response

    Since covid my cortisol has either been low (now backed up by plenty of studies) with hyper inflammation. A few doses per month of hydro 5mg wiped that inflammation out and reset my immune system. Dr Suzan Jackson's Dr recommend this after she has covid and it worked or I'd never have even...
  17. godlovesatrier

    List of ME/CFS Recovery and Improvement Stories

    It's always bothered me that valtrex only lasts about four hours in blood. After that I regularly notice no effect (if I over do it). I also managed to entirely get rid of my hpa axis dysfunction in early 2023 but I don't know how I did it. Even so I think it was due to an rna antiviral. Which...
  18. godlovesatrier

    List of ME/CFS Recovery and Improvement Stories

    I want to try art next. I figure the longer half life would be good too. I now know that I respond to rna antivirals so assuming it's not a secondary action I'd appear to be a candidate
  19. godlovesatrier

    High heart rate (11 weeks post covid)

    Interesting! I haven't got any but I could give it a go. Oddly at night if I take 3 reishi caps that has a profound effect on my body and state of relaxation. But doesn't always allow me back to sleep. Cortisol in my case is a major problem, am still trying to figure out what medication to...
  20. godlovesatrier

    List of ME/CFS Recovery and Improvement Stories

    Citalopram also corrects low cortisol, which might explain why you feel so much better. For me sadly it's far too stimultating.
  21. godlovesatrier

    High heart rate (11 weeks post covid)

    Thanks @hapl808 if I had to hazard a totally random guess I figure antivirals would be the only useful treatment. Not got much to back that up on though.
  22. godlovesatrier

    Is this an adrenal problem?

    so hydration IV worked once a month? It's a shame they are so expensive. But I might invest in a myers cocktail and see if that helps me out. I'd be ok with once a month to be honest to deal with some of these pots issues.
  23. godlovesatrier

    Managing the balance between the parasympathetic and the sympathetic nervous systems going into overdrive

    @Jyoti has an apollo device which stimulates the parasympathetic nervous system I think. Anyway it sounds promising: https://apolloneuro.com/
  24. godlovesatrier

    George Monbiot in The Guardian: ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

    GET is still prescribed in the UK at quite a few clinics @Countrygirl This was a good article, but it's a shame we could be waiting for decades for any meaningful change. God knows where we are going now - I despair!
  25. godlovesatrier

    High heart rate (11 weeks post covid)

    My heart rate is regularly 10bpm above normal. I think this is causing me to feel exhausted by the end of the week, making full time work significantly more exhausting than it used to be. I am just wondering if anyone ever found any good supplements for this? I have a feeling low dose abilify...
  26. godlovesatrier

    Is this an adrenal problem?

    I've also had low cortisol but the drs blamed it on my supplements, I often thing we should lie and not tell them what we are taking, that way they might actually look deeper. Truth be told the hospitals don't have the blood tests to look properly, so it's all a waste of time - depending on...
  27. godlovesatrier

    Is this an adrenal problem?

    You could try life extension reishi, or ginseng. Ginseng will normalise cortisol and increase t more potently in my opinion. Reishi isn't as strong but it will also do the same thing. My t has still been low on reishi though 7.3 when severely stressed, when not stressed it's 11. Ginseng is...
  28. godlovesatrier

    Dr Claire Taylor (ME/CFS) specialism neuroscience

    New specialist dr for LC and ME patients based in Glasgow. If you google her you'll get her website where you can book an appointment. She's an incredibly smart woman who understands POTS very well and is up to date on all the latest long covid research. I am not sure how good she is for...
  29. godlovesatrier

    Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available

    I dropped the dose to 250mcg and didn't appear to lose any benefits. I'll be running out soon and I'm going to try taking lactoferrin and nattokinase instead. I'm also taking magnesium ascorbate and it turns out that might be doing what larozotide is doing. Possibly. So I'll see how I get on...