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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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Search results

  1. heapsreal

    Poll: Do you have a partially empty sella on your brain MRI?

    I've read similar medical posts saying similar. But I wonder how accurate that is as most people get a brain mri for a reason like chronic headaches or some issue with the brain. So I don't know how they come up with 20% of the population have an empty Sella, as healthy people don't usually get...
  2. heapsreal

    Has anyone gotten their CD3+CD56+ (NK-T-CELLS) tested?

    I think with cfs and nk cell and T cell numbers, is that if abnormal they can be above range or below range. My old cfs dr said that basically high nk and T cell numbers indicate a current infection and low numbers can indicate immune cells fatiguing, probably from fighting chronic infections...
  3. heapsreal

    Has anyone gotten their CD3+CD56+ (NK-T-CELLS) tested?

    I have had alot of lymphocyte subset testing done over the years. I found mostly my cd8 and 4 t cells were high and cd3 nk cells were high, cd56 nk cells were within normal range. The lab results would say either lymphocytosis or say possible current viral infection. My nk function and nk bright...
  4. heapsreal

    Instant relief with inosine + caffeine

    Caffeine is suppose to increase the effects of simple pain killers like brufen and paracetamol too. What is interesting about Caffeine helping by vasoconstricting, is that the triptan meds used for migraines are suppose to work in a similar way but my personal experience is it didn't help and...
  5. heapsreal

    Instant relief with inosine + caffeine

    What I've realised over the last several months is that caffeine reduces headaches. I did stop caffeine for approx 6 months and then took 100mg and had a good day as far as headaches go. I use it between 2-3 days a week. I did up it to 200mg a day and probably took 5 months before I noticed the...
  6. heapsreal

    Has anyone tried Cerebrolysin?

    I'm interested in how you use BPC157? I have used it for minor injuries and took 500mcg subcutaneous daily close to the injury. I have heard of others taking it orally to help repair the gut. I'm guessing you take it subcutaneously and it helps systemically?? What sort of dosing schedule do...
  7. heapsreal

    Has anyone tried Cerebrolysin?

    https://cosmicnootropic.com/products/cerebrolysin/ Have a few other interesting items. I have ordered cycloferon from them with no issues.
  8. heapsreal

    Antiviral/-bacterial strategy

    That's a good sign. I've had similar experience that correlated with improvements. I did a lymphocyte subset test which measures all the t cells like cd8, cd4 etc. I found my total lymphocytes came done quickly, say a month or 2 but the T cells took awhile, they took years to consistently be...
  9. heapsreal

    Antiviral/-bacterial strategy

    Mostly likely especially if initially high and over time they have dropped to below normal. Can be similar with neutrophils.
  10. heapsreal

    Carbohydrate-Insulin Model of Obesity: Beyond ‘Calories In, Calories Out’

    I think it might be the same with all capital cities as well as I've been there too long lol.
  11. heapsreal

    Antiviral/-bacterial strategy

    The elevated lymphocytes help confirm that your viral titres are an active infection. With valtrex, it was also common for people to stay on valtrex after they finished their 6month plus course of valcyte. It's worth considering as valtrex as been used to prevent cmv infection in organ...
  12. heapsreal

    Antiviral/-bacterial strategy

    On a full blood test, did they indicate any infections as well eg high or low neutrophils and same with lymphocytes?? I've used valcyte and it's a tough drug to tolerate but did get easier over time. If you check some of the old valcyte forums, there was a trend for people to start with a low...
  13. heapsreal

    NK cell booster Siberian ginseng working well for anxiety and depression. NK cells fight cytomegalovirus — linked to various mental health symptoms

    Is BioBran the mushroom extract AHCC? I used ahcc several years back and it was promising but was expensive. I remember the first night I took it, I broke out in a fever/sweats etc but no more after that. So it seems it does something for the immune system. I wish it wasn't so expensive as I...
  14. heapsreal

    Carbohydrate-Insulin Model of Obesity: Beyond ‘Calories In, Calories Out’

    I think the big benefit of low carb eating is it reduces your appetite significantly, after following the diet 3-5 days as ketones kick in. Im a big guy but I found I naturally eat 2 meals a day when low carbing and some days snack on some cheese or a protein bar. So I think with the calories...
  15. heapsreal

    Carbohydrate-Insulin Model of Obesity: Beyond ‘Calories In, Calories Out’

    So not Woodridge lol I grew up there and it's deteriorated from my childhood but then I think the whole South East Qld has gone down hill.
  16. heapsreal

    Insomnia from valacyclovir

    I do recall somewhat not reacting well to valtrex/generic, I think they narrowed it down to the blue die they used to make the pills. So sometimes it call be the additives that people struggle with. So a good idea trying different brands👍
  17. heapsreal

    Brain Sensitivity / Headache without the pain

    Yes. I actually think brain fog is a low level of pain or maybe pre-pain🤔. Some days it can just stay foggy but other days it progresses into a headache or a full blown migraine .
  18. heapsreal

    Dr David Tuller: David Putrino on 1) Australian Call to Scrap the Term “Long Covid” and 2) New Pre-Print on Sex Differences in LC

    That is interesting, prolonged disability rates similar to other respiratory illnesses. So I wonder what is the percentage of long term disability from other respiratory illnesses is?? So not just long covid but other chronic conditions they are ignoring. At a guess, going from the Australian...
  19. 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...
  20. 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...
  21. 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...
  22. 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???
  23. 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...
  24. 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.
  25. 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...
  26. heapsreal

    Nicotine patch experiment

    I had problems with nicotine patches, really hard to lite 🤣 Sorry I couldn't resist that line.
  27. 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.
  28. 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...
  29. 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+...
  30. 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...