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  1. heapsreal

    How many of you have medication resistant myalgia?

    Not really myalgia but chronic lower back pain which is quite severe and recent xrays of my knee's show moderate arthritis. I was struggle with pain just grocery shopping. I was on tapentadol 50mg in the morning and was starting to take a second dose a day. It was helping but not for very long...
  2. heapsreal

    Did your cfs start due to Epstein Barr?

    They use to say it's a hit and run infection or some sort of stress, so initial trigger is gone but left us with neurological and immune dysfunction but I think many could have a chronic infection going and also the damage from the initial hit. It's also possible to have had a severe flu...
  3. heapsreal

    Have you ever told a doctor that you were taking something off your own bat, and, if so, what was the reaction?

    I probably tried more things that I haven't told them by a mile then i have told them🤣
  4. heapsreal

    POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

    Supposedly most people recover fine from ebv or cmv mono but you would think if someone hasn't recovered from mono after 3 months and has high viral titres, cd8 T cells etc, it should be a standard treatment to then be put on a course of antivirals to possibly help prevent cfs post viral issues...
  5. heapsreal

    If you have not yet done so, you could try sulbutiamine!

    I use 300mg of Benfotiamine and it might help mildly for cognitive stuff but I think it helps with general neuralgia and helps with shingles nerve pain.
  6. heapsreal

    List of supplements and drugs that improve ME/CFS within hours or days

    Modafinil Low dose 50mg but only use it a couple of times a week if needed. Caffeine, but works well if one has been off caffeine for several weeks and then use 100mg a couple of times per week. Good to have a couple of weeks every so often where you have no Caffeine. AlphaGPC, milder than...
  7. heapsreal

    Opioids and LDN

    Possibly, but if in a pem state or a crash, and no reactivated infections i could see it helping with decreasing inflammation especially if you think/know its autoimmune?? The caution is that some cfs people can get overstimulated in a bad way on things like prednisone. If you're a cfser...
  8. heapsreal

    Treatments to Explore

    For symptom treatment of pem is really just to rest and get good sleep. Stimulants like modafinil or caffeine only use as needed no more than twice a week and low doses. Modafinil i found 50mg was enough. I don't drink tea, coffee or other sources of caffeine so when I use caffeine (in a pill)...
  9. heapsreal

    Methotrexate

    Totally agree with your post👍
  10. heapsreal

    Opioids and LDN

    My thoughts on pain killers and how they help cfs. I think brain fog is a low level of chronic pain and inflammation. In my experience, sometimes that brain fog increases into a headache for a few days and sometimes a full on migraine and vomiting episodes. I've found when the brain fog is...
  11. heapsreal

    meds for high cortisol?

    Phosphatidyle serine(PS) can help lower cortisol. Several years back i used PS at night and it did help improve sleep. I took 500mg a night. I did have a 24hr cortisol test and my night time cortisol was above the normal range at night and below the range in the morning. Optimising dhea levels...
  12. heapsreal

    High Dose Testosterone

    I had a quick look but I couldn't find it. It wasn't a specific talk on testosterone treatment but a lecture on many things/treatments etc on cfsme. The lecture wasn't in anymore depth than I originally posted about her. If you search testosterone and anabolics in HIV , you can find info on how...
  13. heapsreal

    Deep Research on CFS/ME

    In the very early 90s Klimas found low nk function in cfsme. Then in 2010s Griffith university in Australia, did research showing low nk function in cfsme as well as low cd8 T cell function. These nk and T cell dysfunctions have been known about for a long time and are found in a significant...
  14. heapsreal

    New non opiod pain killer, suzetrigine (Journavx)

    That's an arm and a leg for 1 pill. If it took your pain away for 12hrs, I'd pay for it but I'd probably only use it once a week.
  15. heapsreal

    New non opiod pain killer, suzetrigine (Journavx)

    Supposedly on the market January 2025 in America. Posting this now so anyone who has used it can post their experience with it. I did read it was Supposedly as effective as the combination pill of paracetamol/endone. If this is true and Drs aren't scared to prescribe it, then it could be a...
  16. heapsreal

    Blood Test Results - Help Interpreting

    If I've read it correctly, your total testosterone is above range. Any mention from drs about being PCOS?? Have you had dhea levels tested also as this can also be apart of pcos and increase testosterone levels in females.
  17. heapsreal

    Norepinephrine enhances all my brain functions.(CFS、PEM、brain fog)

    Edronax is a NARI, it definitely cleared my head but that it gave me insomnia and sweating alot from it. Everyone reacts differently though, so worth a try if you think noradrenaline is going to help you.
  18. heapsreal

    Mycoplasmas - Stealth Pathogens

    I haven't been really following the research for awhile. Was there results of his pathogen study showing any particular infections??
  19. heapsreal

    Start-up EBViously founded

    Apparently they don't find anyone with MS that doesn't have ebv antibodies. In my case and I've heard it happen to others with cfs, ebv was or apart of the triggering infection in cfs. I tested igg positive to ebv, life long antibodies supposedly, probably tested about 4 weeks after intial...
  20. heapsreal

    Start-up EBViously founded

    Good question. I think it may have for polio/post polio syndrome.
  21. heapsreal

    Testosterone resolves fatigue and inflammation.

    Women produce testosterone although alot less than men, so if your levels are low then theoretically it could help. As a man I've found it very helpful. My testosterone levels were below normal. I also treat other aspects that are an issue in my cfs like chronic infections, sleep, pace myself etc.
  22. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    Ever since covid, even though I can't see how it would be effecting shipping now, shipping has been so slow. Pre covid I'd recieve an iherb order in Australia within 5 working days, now it's atleast 2 weeks. Maybe it's all the temu orders people have world wide 🤔
  23. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    Lol. I imagine if all cfsers stopped taking supplements, the stockmaket would crash 🤣🤣🤣
  24. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    Usually. My recent order was held in customs for several weeks. Alldaychemist reshipped my order and then customs released the initial order, so ended up with 2 orders.
  25. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    I use benzos for sleep, not for anxiety. Tofisopam I've tried but I don't rate it very highly. I agree with hip about etifoxine/stresam. It has a good calming effect and could see it helping anxiety. To me it felt alot like lyrica. Buyetizolam.net has soma, it has a good calming effect. I...
  26. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    Good idea, than people on the forum can see people's personal experience with these sites. Probably more reliable feedback, I think 👍
  27. heapsreal

    List of Reliable Prescription-Free Online Pharmacies

    SafeGenericPharmacy.com I've used a few times. Never had any problems with ordering or credit card issues. They seem to have a bigger variety of meds compared to Alldaychemist, which is probably the most common online pharmacy used.
  28. heapsreal

    Invest in and/or try different antiviral protocol

    If they test the patient adequately and put them in the correct sub group, people can improve, there are a very small number cured and many that relapse. Some have been able to maintain their function from valcyte after switching to famvir or valtrex. Valcyte can be a rough treatment to tolerate...
  29. heapsreal

    Invest in and/or try different antiviral protocol

    You would think so but there's been other antiviral treatments like valcyte that looked promising for cfs. That was 20yrs ago and it's still an expensive treatment, unfortunately. Valcyte could be a helpful treatment for certain subsets.
  30. heapsreal

    Invest in and/or try different antiviral protocol

    Possibly it should, as our cells change over at varying rates. One example is red blood cells I think die off and regenerate every 60 days or so, don't quote me on that. Other cells will take longer and it can be hard for some drugs to cross the blood brain barrier. Fingers crossed it has a...
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