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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. godlovesatrier

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

    paralysis - mirtazapine turns me into a total zombie @SpinachHands - your partner is so sick I suspect she's suffering from mirtazapine sides not some sort of ME symptom/reaction, just to clarify. Mirtazapine if I take the normal dose I can't even speak to people the whole day afterwards...
  2. godlovesatrier

    [Substack] Ruth Ann Crystal MD from Dr. Ruth’s Newsletter April 2024

    I'd suggest I have POTS to be honest, but my heart rate does return to about 80 or 90 after exertion. Resting is currently about 80.
  3. godlovesatrier

    [Substack] Ruth Ann Crystal MD from Dr. Ruth’s Newsletter April 2024

    Really good summary of current covid treatments circulating I guess mainly in america. https://drruth.substack.com/p/covid-news-and-more-4724?utm_source=profile&utm_medium=reader2 specifically important or useful paragraphs: Long COVID I also found out that a double blinded study showed no...
  4. godlovesatrier

    Doctors in and around London, UK

    @BrightCandle will let you know how I get on. @Seadragon can't remmeber the name of it will post tho if I do remember.
  5. godlovesatrier

    Doctors in and around London, UK

    Dr Bansal - yes I see him he prescribes me valtrex and he's given me an insomnia drug so I can finally get some sleep (the new drug works better than anything else I've ever taken). Dr Bansal has also prescribed me low dose doxycycline which was really very important post covid, it helped me...
  6. godlovesatrier

    Inflammation Testing

    Let me know if you find them @Treeman your best bet is doctors lab in london though, that's probably it. I'll be getting my iron ferritin and CRP redone. I would expect them to be back to my old baseline post covid (crp was 13 I think when I had covid), if not then something continues to...
  7. godlovesatrier

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I think my hrv is generally 45 now. It's gone down a lot since I started my newest job.
  8. godlovesatrier

    New wearable that tracks blood flow to the brain

    Been using visible for awhile now. Basically long story short crashing for me seems to be due to adrenaline and viral load and maybe inflammatory load as well. That is if my heart rate is high it's bad, but if my heart rate is average at rest 80 bpm - I can still crash from adrenaline and...
  9. godlovesatrier

    Comment by 'godlovesatrier' in 'Covid day 75'

    Yeah vivomixx did give me symptoms early on but you'll find you'll get that from almost every probiotic. It's just bacterial shift. It takes awhile to go away tho and that's the real downside. I'm sat here now with strong kidney pressure in my lower back. You won't find prausnitzii it hasn't...
  10. godlovesatrier

    Comment by 'godlovesatrier' in 'Covid day 75'

    It is a very odd symptom. I've been taking vivomixx for about ten days straight. It gave me kidney stones but it's fixed my screen intolerance. That and just waiting for my body to heal probably reduction in viral load. Anyway I do think the vivomixx was a big part of it too. I'm still using my...
  11. 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...
  12. 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.
  13. 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...
  14. 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...
  15. 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...
  16. 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.
  17. 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...
  18. 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...
  19. 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...
  20. 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...
  21. 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...
  22. 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.
  23. 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.
  24. 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...
  25. 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...
  26. 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...
  27. 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...
  28. 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
  29. 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...
  30. 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.