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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. heapsreal

    Insomnia Rant Part Two/Phosphatidylserine

    Valium is really an add on just to top up the other 2 meds. Zopiclone and zolpidem are good meds to help you fall asleep quicker. I would have a good tolerance for sleep meds, I've had cfs since 2002 and probably started using sleep meds 12 months later after all the alternative treatments...
  2. heapsreal

    low dose hydrocortisone without impairing immune response

    Have you tried pregnenolone? The normal doses most use is 25-50mg a day. Initially that was too strong for me. If I recall correctly I used 1-2mg in a cream Initially and switched to tablets as I could tolerate pregnenolone and not become overstimulated by it. It did increase my low morning...
  3. heapsreal

    Insomnia Rant Part Two/Phosphatidylserine

    Wow, this is an old thread, brought back memories. Currently I take zopiclone, zolpidem and valium one pill each and an antihistamine either diphenhydramine 50mg or doxylamine 25mg and 20mg melatonin. But I have been experimenting some nights with high dose melatonin 80mg and 1 zolpidem which...
  4. heapsreal

    Cytomegalovirus associated with mental health conditions including anxiety, depression, bipolar and psychosis

    Just a guess, but generally if immune markers are high, the immune system is activated by an infection or some autoimmune process. If low then maybe immune exhaustion, especially if you know you have chronic ongoing cmv infection for a long time???
  5. heapsreal

    Cytomegalovirus associated with mental health conditions including anxiety, depression, bipolar and psychosis

    Yes, interferon stimulates natural killer cells, which is a very common abnormality found in cfsme. Immunovir which was a common treatment given by cfs drs 20yrs ago, is classed as an interferon inducer and this was its mechanism in how it increased nk function. Not a cure but it does help...
  6. heapsreal

    Is this an adrenal problem?

    A neurologist or endocrinologist but your GP should be able to run all your hormone labs and the signalling hormones like luetinizing hormone and follicle stimulating for sex hormones as well as ACTH/adrenal corticotrophic hormone for adrenals.
  7. heapsreal

    Is this an adrenal problem?

    With low dhea and cortisol it's not usually an adrenal issues but a hypothalamus/hpa signalling issue. Signals from the brain to the adrenals are low for some reason but common in cfs. I find taking dhea at 25mg/day and pregnenolone at 50mg/day helped improve my low cortisol but I needed to...
  8. heapsreal

    Nicotine patch experiment

    I had problems with nicotine patches, really hard to lite 🤣 Sorry I couldn't resist that line.
  9. heapsreal

    Cytomegalovirus associated with mental health conditions including anxiety, depression, bipolar and psychosis

    I guess I'm lucky in that I can tolerate most meds and supplements. It must be frustrating trying to find things that help especially with a mast cell disorder and or allergies etc.
  10. heapsreal

    Cytomegalovirus associated with mental health conditions including anxiety, depression, bipolar and psychosis

    Is there any research showing safety of artesunate long term? I have been cycling on and off artesunate for last 12 months, mostly as a guess at treating possible chronic bacterial infections. I have been using other bacterial herbs constantly the last 12 months and have noticeable improvement...
  11. heapsreal

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    It didn't take long to find a study done by Griffith university on cd8 T cells. It seems to be a common finding in cfsme??? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4736227/ In summary, these preliminary findings provide new insight into the possibility of hyper activated inflammatory CD8+...
  12. heapsreal

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Griffith university in Australia have done alot of research on low nk function in cfsme pts. The nk function study I was involved in 2009, they also told us that there is a high percentage of cfsme pts with low cd8 t cell function. I know they have published alot of papers on nk function but I...
  13. heapsreal

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Sounds alot like Dr Martin Lerner when he mentioned persistent abortive lytic infections found in cfsme.
  14. heapsreal

    Stem cells and peptides

    https://eterna.health/ Dr Khan's Web page with some interesting links to instagram and utube. Which I plan to watch.
  15. heapsreal

    Stem cells and peptides

    This is generally a Bodybuilding podcast but 32minutes in, this Dr talks about many different things that would interest a cfsme patient. He mentions stem cells, peptides and gene editing to treat natural killer cells and also mentions treating different t cells. Also talks about controlling...
  16. heapsreal

    Cycling sleep medications

    When my cfs was bad and have that constant shitty feeling. If I took a Med for sleep and it worked during a bad insomnia spell, the extra sleep just made me feel less shitty. I think when viruses are reactivating and have alot of inflammation, even if you get a reasonable amount of sleep, you...
  17. heapsreal

    Cycling sleep medications

    What I've found helpful for naps is a mildly boring podcast or other utube video, enough for me to sort of follow and then I drift off until the video finishes and then I wake up. A good utube video I listen too every so often is a video on economics narrated by Thomas Sowel, a black American...
  18. heapsreal

    Loss of IgG antibodies

    I've had alot of things tested but the tests I recall as abnormal, that I followed/keep track of were, initially total lymphocytes were high, this was 7 yrs after cfs onset. The first 7 yrs I didn't really get to see blood work as my dr would just say something was good or bad basically. When...
  19. heapsreal

    My experiences with apoptosis treatment for HHV-6b, EBV subgroup ME/CFS

    @gbells I take it you test negative igg to ebv? It seems somewhat common in cfsme. Have you had nk function or numbers tested? The other thing common with active herpes virus infections like ebv/cmv/hhv6 is one's cd8 t cell counts are usually high. I've found it a good marker to see if...
  20. heapsreal

    Need Amino Acid IV

    Are you on t3/t4 and testosterone replacement, if so how much does it help?? If on trt, it should help your body retain more nitrogen/protein and should be less reliant on amino acid infusion. What treatments have you tried for leaky gut?? Probiotics, digestive enzymes and glutamate??? Cheers👍
  21. heapsreal

    Cycling sleep medications

    Yes, I mostly use zopiclone but will use zolpidem. I also take 5mg of valium. I rotate between a few different benzos as well. I find the benzo's help sleep initiation and I will add an antihistamine to help prolong sleep. I rotate the antihistamines too. Always keep melatonin (10mg) in my sleep...
  22. heapsreal

    Cycling sleep medications

    Do you find a time of the day that you do tend to sleep?? For me my body clock when my sleep went whacked, I tended to shift to a 5am - 9am time slot that I'd get some sleep. What I found helpful was changing my bed time to like 3am and take my meds. The meds helped me to fall asleep abit after...
  23. heapsreal

    Herpesvirus Infection as a Systemic Pathological Axis in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Nunes, Kell & Pretorius, preprint)

    I think so too. These infections are well controlled by normal non cfs people but in cfs people with low nk function etc, they can more easily reactivate. I think the initial triggering infection that many get, some how breaks or disrupts the immune system. The triggering infection could be...
  24. heapsreal

    severe head pressure - feels like head is being squeezed in a vice

    Can feel absolutely exhausted and head throbbing in pain especially in the afternoon and like you mentioned, lay down for 15-20mins, not sleeping just resting and there's a significant improvement. I think it's the build up of csf fluid can drain out when lying down and reduce the pain and...
  25. heapsreal

    severe head pressure - feels like head is being squeezed in a vice

    That sounds alot like what I had. Read my post above may help. Chronic Intracranial hypertension???
  26. heapsreal

    severe head pressure - feels like head is being squeezed in a vice

    I'm sure I had this as a few years ago my headaches changed. I get headaches from shingles/phn and cfs brain fog sensation that can turn into a headache. But the intracranial hypertension was different feeling. Usually better in the morning but progressively worse as the day goes on as the...
  27. heapsreal

    Help finding B12 sources please!

    https://specialistsales.com.au/shop/animal-health/sheep-products/nutrition-and-metabolism-sheep-products/cobalex-2000-b12-injection-hydroxocobalamin/ I have heard of people using vet b12 which is quite cheap I've seen $65-$100Aud for 500ml x 2000mcg/ml. Common in the Bodybuilding and...
  28. heapsreal

    I have an odd hormone problem

    As mentioned, if you aromatise alot of testosterone to E2, this could cause alot of water retention etc. The other thing I'm thinking is your dhea and if it's high. I've seen people under stress have high levels of dhea, the adrenal hormone. This could potentially increase testosterone and E2...
  29. heapsreal

    Allicin, Antibiotics, Artemisinin, And More

    Serrapeptase is something I take regularly that can help break down biofilms and reduce bacterial resistance. I'm basically taking a combination of herbs for bacteria like lyme and coinfections which I rotate between. Grape seed extract I take all the time but rotate in and out artemesia...