MEnough

@finnishgunners Hi! Do you mind sending me a DM? I can’t send you one it seems, and I would like to ask some questions with regards to daratumumab. Cheers from Norway

IgG dropped from 10.5 to 4.5 with daratumumab. Happy with that. Now please for the love of Arsenal make me better.

@wtogami @SalvMattera What kind of lymphocyte stimulator are you responding to, if I may ask?

@SalvMattera I should have wrote "significant" instead of total. But it's surprisingly good. I just wish it would last longer so I am looking for stronger immune boosting therapies.

The discussion about this drug in the Long COVID space has always felt very strange to me.

@atranscendedman Are you doing all these at the same time?

mood

@Gmwetz Thanks! I think I will test it, worth a shot

@MEnough7 Subjectivity I feel less heavy. Skin feels well hydrated. Taste is not so nice. I can recommend it. You can dose it nicely

Can be by accident or not… Yesterday I added 300mg of Benfotiamine, 250mg Thiamine HCL and upped my electrolytes and trace minerals. It already lowered my heart rate during the day. Below you see my whoop sleep stress core (calculation between HR and HRV) 0% high sleep stress 0 % medium sleep stress Let’s see if this changes the symptoms and if it is reproducible

@Gmwetz Thank you! Do you think they help you?

@MEnough7 bodybio.co.uk/products/remin…

@fcknsyd I forgot to say, he has ME/CFS, POTS and MCAS

@fcknsyd My brother took it four times (one each month for four months). He stopped due to no effect. He is usually quite sensitive to drugs/supplements, but didn’t have a negative (nor positive) reaction to Xolair

Has anyone tried Xolair injections? They are being offered to me but I'm nervous bc I got anaphylaxis from oral cromolyn sodium Can I hear good and bad Xolair experiences pls 😭 I've been managing my MCAS and hives with daily benadryl + other antihistamines

WOW! Nye NIH direktøren sier pasienter med ME, long covid osv har blitt gaslighted i lang tid, og at han ønsker mer forskning. Norske helseledere fortsetter å lukke øynene og ørene @Helsedir #MECFS

@subversivepsych @rainbowjanelane If you sent me a dm I didn’t get it. Thanks @elonmusk for still thinking I’m a bot, despite having completed numerous human verification puzzles

@subversivepsych @rainbowjanelane That’s a shame:( Do you mind sending me one?

@SalvMattera @amaticahealth Thanks! I was under the impression that it was at no cost to the patients

If you're thinking about buying @amaticahealth tests, read my exchange with Jack in this thread. Just want to make sure people understand what is and isn't being offered here

@jossyoursalad69 Thank you!

Great question and a very important consideration if you want to start B12 injections! The cofactors are essential

@rossettiStone1 @seanstidston @SalvMattera Thank you!

@MEnough7 @seanstidston @SalvMattera youtube.com/live/VC8sp8o0c…

For anyone following my journey of self experiments, I wanted to provide an update: I've discontinued the following interventions for over a month at this point, and remain mostly recovered: -maraviroc (used for 10 months) -lipitor (used for 10 months) -coq10 (used for 10 months) -milk thistle (used for 10 months) -NAD+ injections (used for 6 months) -BPC157 (used for 6 months) -creatine (used for 11 months) Starting today, I'm weaning off of testosterone over the next month, which I've used for about 6 months. We'll see how this goes since my body shut down its production almost immediately. I may have damaged myself permanently, but it was a risk I was willing to take. Then I will discontinue modafinil. I skipped taking it a couple days here and there and did not notice much of a difference, so I don't think coming off of it will be a problem. But I'll see. Fish oil, vitamin D, tirzepitide, I will likely use these forever. Though i would like to reduce tirzepitide over the long run. Keeping it mostly because I found that it has extinguished my desire to drink alcohol completely. I'll also cycle on and off creatine regularly, as I have for most of my life, even before Long COVID. At this point, my only remaining symptoms are a numb left leg, and POTS symptoms that hit me 2 or 3 days per month. At this point, I've managed to avoid reinfection for well over a year. I'm working to get pemgarda not as a treatment,but as an additional line of defense. If I do get reinfected, and do get worse, I'll next try low dose abilify and IVIG.

@seanstidston @rossettiStone1 @SalvMattera What’s the reasoning for combining maraviroc with a statin?

@rossettiStone1 @SalvMattera That’s good to hear. I’d like to try Maraviroc and a statin. But the only real way to get Maraviroc in the u.k is India mart.

@wtogami Thank you for sharing! May I ask which biomarkers help determine if you’re a good candidate for Anktiva?

Long COVID Status Update 2025 Dec 22 Symptoms Summary * Severe since 2022: Brain fog, PEM, PENE. During 2022 I was bedridden for 6 months. I could barely walk down a flight of stairs, felt unsteady and unbalanced. Could not read or copy a 7 digit phone number. Brain was severely malfunctioning to the point where I struggled to form sentences. Driving was dangerous. * Some improvement 2024: Feel chronically ill. Thinking is difficult. Brain fog in and out. Physical exertion is punished. For example assembling this IKEA furniture took me ~2 days of effort followed by 3 days of PEM crash. * POTS: Maybe moderate? I am not terrible most of the time but briefly exerting at odd angles like to pick up kids makes me dizzy. Full on tilt table test makes me feel VERY BAD for 2-3 days. * MCAS? Not sure. Many of my symptoms get worse if I stop my antihistamine medications. Hydroxyzine seemed to be the most effective but I had to stop it recently due to drug interactions. Currently on the much weaker loratadine. * Chronic prostatitis. Started at the same time as LC back in 2022. Crippling pain. Inflammatory something caused tissue to obstruct leading to BPH. * Complex autoimmune changes 2022-2023: CCP IgG positive suggests RA. I received some symptom mitigation from hydroxychloroquine. By 2025 CCP IgG disappeared but I became ANA positive instead. Treatments that didn't work - LDN, long duration Paxlovid, Adderall, Metformin (drug interaction) - rapamycin - sort of works but causes problems over time. This again feels like a clue mitigating downstream problems not the upstream cause. - splenic nerve stimulation - This was an interesting failure! It caused a WONDERFUL FEELING OF TOTAL RELAXATION as the brain-on-fire went away entirely. For 18 hours I felt great. That was followed by symptoms coming back ... then slowly I felt sicker and sicker. It is known to reduce cytokines. I think it causes temporary immune compromise allowing for viral activation. Two weeks later I was symptomatic and tested positive for COVID on a home antigen test. That was an interesting and spectacular failure. I intend to try it again in combination with the combination treatments described below. Treatments - November 2023: hydrogen inhalation mitigates my brain-on-fire symptoms every time. Hypothesis: cancels out reactive oxygen in all cells in your body, temporarily mitigates problems with damaged mitochondria. This is definitely a downstream mitigation but not addressing the upstream cause. Unfortunately the effects wear off after only a few minutes. It isn't a solution, more of a clue, but it is at least something I can use to cope during a heavy PEM crash. I should write a thread exclusively on the topic of hydrogen inhalation for LC/ME. - December 2024 azithromycin caused significant symptom improvement for 1 month. Temporary improvement to brain fog and PEM, and temporary near remission of prostate pain. The effect stopped working so I discontinued. I have to wonder if long-term antibiotics might have been the cause of autoimmune biomarkers changing over time. - July 17th 2025: 1st Pemgarda. See my other thread. x.com/wtogami/status… - October 3rd: brain fog was very bad. Two days after Novavax brain fog improved a lot and stayed that way for two weeks. Unfortunately it feels like brain fog might be a separate thing from cognitive dysfunction. Exertion still caused neuro crash and inability to think. - October 22nd: Started val/cel combo. Val alone seemed to improve my PEM baseline 30%. Cel seems to be reducing inflammation a minor amount. Honestly not sure what cel is doing but sticking to it because of the Pridgen Protocol. GP is concerned about the long-term GI risks of that high cel dose. I didn't randomly decide to try val/cel. My labs this year on multiple occasions have read high EBV IgM which suggests dormant viral reactivation. Valacyclovir is not targeted at EBV. My guess is multiple other dormant Herpes-family viruses are reactivated at the same time. ID doctor wanted me initially to try valganciclovir which is targeted against CMV. I decided to try valacyclovir first because of excellent safety profile (no black box warning). Whatever val is doing seems to be suppressing a major portion of a persistent infection. I still feel constantly ill. Ability to think has improved by 30% on a sustained basis which is a lot better than past years. That might be due an improved my PEM baseline. I'm not sure. I tried to play catch up with years of defferred maintenance, overdid it and caused a neuro crash for a few days. December 4th: azithromycin again mitigated both neuro and prostate symptoms. - Very Soon: 2nd Pemgarda The Pridgen Protocol trial suggested better results for those who took combination Paxlovid during a portion of the long duration val/cel. In my case I'm combining long duration val/cel with Pemgarda and Paxlovid. x.com/wtogami/status… My previous Pemgarda didn't yield lasting improvement. I had some serious problems like heavy drug interactions with the combination antiviral. This time I eliminated all meds that conflict with Paxlovid. I'm refusing the pre-medications that interfere with my ability to feel what effect if any Pemgarda is doing to me. - Biomarker Monitoring I'm periodically getting freezing blood/serum/plasma vials before each big treatment. If a big change happens after a treatment then analyzing before and after vials may help to figure out what changed. Future Stuff I want to try 1) Microdosing GLP-1. No reason not to try this. I previously could not try because it had a dangerous interaction with those same meds that I can't take with Paxlovid. But after elimination I can try both this or the milder Metformin again. 2) I'm interested in antiretrovirals where some people had success like with Maraviroc. 3) I am intrigued by the anecdotes coming from the Anktiva LC trial. I have now begun monitoring biomarkers to help determine if I am a good candidate for these immune modulating treatments.

@mildTin @ahandvanish @cstroeckw @weandmecfs

This can be funded for $30k USD!! Weak australian dollar = absolute bargain for crowdfunding imo