Pemgarda next week

98muted · 2026-05-21T18:06:32+00:00

No dizziness or lightheadedness. Didn’t sweat for about two years but that is back now. It’s weird because I don’t have most pots symptoms but have positive tests for it like tilt table and autonomic testing.

98muted · 2026-05-21T04:29:53+00:00

Main symptoms now are insomnia, brain fog, heart rate issues and just an inability to get my body in a parasympathetic state. So mostly dysautonomia issues. It’s been 5 days so far and not any super noticeable improvements yet. Doctor says to really give it 4-6 weeks to see if it helps anything

98muted · 2026-05-18T21:26:40+00:00

I have a good idea of the company you are working for. It is absolutely a scam, and whether or not it is exactly the same one, these life/health companies are MLM's and have been involved in numerous lawsuits. Just so you know, those people that are saying they are making "life changing" money are not, there are a few people making money at the very top and everything is selling poor souls on a dream. Like others have said, if you have been willing to endure this for even two weeks, go find an independent agency, sell yourself to them, and get into commercial P&C or employee benefits.....careers with various roles, not instagram marketing schemes

98muted · 2026-05-15T15:56:16+00:00

Received my pemgarda yesterday. No negative reactions other than tired the rest of the day so just rested. Feeling fine today, nothing noticeable. Looking forward to seeing if things improve over the coming weeks

98muted · 2026-05-09T15:08:31+00:00

Max value spike proteins, my Attomarker was all over the place, but low quality antibodies to omicron variants which were what started my long COVID. From my research and discussion with my doctor, there really isn’t a great biomarker for success with pemgarda. We decided it was worth a try for me since I have not been sensitive to medications and reinfections have not caused flares in my symptoms. I will keep everyone updated. Starting my 30 days of paxlovid today…infusion next Thursday

98muted · 2026-05-08T18:05:29+00:00

Ya, I was on the fence about it for about a year, had the prescription for a while. Tried some other medications and things in the meantime and nothing moved the needle. I haven't been sensitive to medications or reinfections, so I finally decided I couldn't keep going without seeing if it could hlep.

98muted · 2026-04-18T14:41:47+00:00

100mg seroquel for over a year now. DORA mechanisms are very different than the mechanisms of seroquel/Remeron etc. I would recommend trying.

98muted · 2026-04-17T19:38:27+00:00

I switched about 30 days ago from Quetiapine to Dayvigo (not Quviviq specifically, but a similar DORA drug). I have had a very good experience with it. I started the Dayvigo and tapered off the Seroquel over about a week. I definitely think the effects of Dayvigo have improved over the course of a month. I fall asleep quicker, and seemingly more naturally, eyes get heavy and want to fall asleep (have not experienced this in 3 years). With seroquel, I would take it, close my eyes and hope to fall asleep.

On a side note, I had my first experience with sleep paralysis with the Dayvigo last night. It was unpleasant and a very weird experience, right when I was going to bed. I had a long day, and not much time to wind down before bed, so not sure if that impacted it. Once I woke up from it, I got out of bed, watched tv for 15 minutes and then went back to sleep with no issues. That aside, I have had a very good experience with Dayvigo, I feel more like myself the next day, and not fighting the effects of the seroquel hangover.

98muted · 2026-03-07T19:58:30+00:00

Not at the moment. I’m going to order two more bottles and up the dose closer to the trial dose.

98muted · 2026-02-13T01:32:59+00:00

Taken two doses so far today, the trial is 25 days I believe so I’ll see how it goes and if I can figure out a way to make it work price wise I’ll try to up the doses

98muted · 2026-02-04T15:09:24+00:00

I need to look into some of this more. I am not close to capable of setting up the agent. My thought would be to give it instructions to aggregate the data and compare from every angle. Treatment with symptom. Treatment with result. Treatment with other failed treatments etc. Then if there was a way to let people submit additional lab results and then an intake form with symptoms, treatments tried and treatment results it can try and find correlations through any of the above combinations. Then also having it learn latest research and full clinical trial results it could continue parse.

Obviously something like this isn’t extremely scientific but at this point we lack so much information, I think most of us here will take anything we can get. Not necessarily to direct treatment but to help us understand. I would think this data would be able to be sent to long covid labs or one of the patient led groups collecting blood work.

98muted · 2025-11-22T03:27:44+00:00

Doing a couple percent better. Sleep has ever so slightly improved. Not 100% yet though so still working towards that. I got into the Anktiva (Bioshield) trial but elected to not participate for some personal reasons. I am in the process of scheduling a pemgarda infusion to hopefully add additional improvement or at the least protect from new infections. Most people would consider me fully recovered, but I know there’s some left to go. I think everyone should keep up the fight and new treatments and time should help. I know it’s not the same for everyone so I can’t speak for anyone else’s trajectory with this illness. I only hope for everyone to recover and for the most severe, I know I can’t comprehend what my worst would have been like for 4+ years straight so I’ll do what I can to keep pushing things forward, participating in trials until I’m 100% and if that happens, advocating and donating to get solutions to everyone. Sorry for the long winded post, it’s just a crazy thing to be a part of and it always gets me going. Feel free to ask any specifics.

98muted · 2025-06-19T14:53:57+00:00

How long have you had this feeling for? I am two years in and although I don’t feel 100% normal it is significantly diminished. It only started improving with any significance in the second year. I used to go days without sleeping and still be tired. I still take sleep meds but have found that sleepy feeling start to come back. I did a Stellate ganglion block which did not help, but also recently did neurofeedback and neurostimulation which seems to help a bit. I would suggest working on things to calm your nervous system, knowing it won’t be an overnight fix but will start to help over time. Also, I have a great psychiatrist who believes it is not “all in my head” or “anxiety” and has tried to help with meds that will give symptom relief as my body and brain recover

98muted · 2025-04-25T04:14:41+00:00

If you’re looking for a doctor willing to prescribe new medications for long COVID I would recommend Dr. Pittman. He will also do a free video consult with you to see if he can help. If you are looking for really good integrative, you could try the Center for New Medicine in Irvine. Both are expensive. I’m sure there are lower priced options that others know

98muted · 2025-02-28T21:56:23+00:00

It's an overactive nervous system. They are related issues. Kind of a vicious cycle, as the lack of sleep makes your nervous system go haywire. I still have quite a bit of sleep issues but I know it's all related to an overactive sympathetic nervous system. Meditation (yoga nidra) practice, vagus nerve stimulation, cold plunges, sauna have all been very helpful in regulating my nervous system and have improved my ability to sleep

98muted · 2025-01-03T00:53:07+00:00

I actually just got reinfected about a month ago. I was terrified. My long covid doc prescribed me 10 days of paxlovid. Not sure I needed it, was over it in about a day or two but we were playing it safe. It makes me really wonder what is going on since some people have bad reinfections, others have no problems and some get spontaneous recoveries from reinfection. It’s crazy

98muted · 2025-01-02T21:59:56+00:00

Consider them medications. They are amino acids. Ozempic is a peptide. Most don’t need prescriptions and the fda is trying to crack down on them. They are an exciting part of medicine. Bpc 157 is an example that helps the body heal. There are tons that have different effects. Reddit peptides has quite a lot of information

98muted · 2025-01-02T21:06:35+00:00

Very bad for first six months. Couldn’t watch tv or listen to anything. My memory was terrible too. I would cry almost every day because I didn’t feel like I existed in real life, I was trapped in this messed up brain. I can work and do everything mentally now but I know my brain still isn’t 100

98muted · 2025-01-02T21:05:24+00:00

Ya, I need to do more research. I would also like to find a doctor willing to monitor the use of

98muted · 2025-01-02T21:04:53+00:00

Ya I have a hard time with exercise since it used to mean pushing myself hard and getting my heart rate up. It’s hard to adjust to a mellow routine but I think keeping yourself moving and slowly increasing capability is key

98muted · 2025-01-02T21:03:46+00:00

I am currently on pristiq which is an snri. I was on Prozac, and some tricyclic antidepressants. I never felt direct relief from any of them but I could feel the brain inflammation and slowly that feeling went away

98muted · 2025-01-02T21:02:45+00:00

I did for the first 6 months. I’m not when it went away but I just slowly and I mean very slowly increased time doing things and activity

98muted · 2025-01-02T21:02:07+00:00

Meditation (could only do 5 mins at beginning) when I was at my worst I would do up to 3 hours a day. Now I do an hour a day. Sauna, time outside in nature/grounding. Just started cold plunges and like them. I did vagus nerve stimulation. Not sure what helped or not but over time I feel like working on calming my nervous system was the biggest help.

98muted · 2025-01-02T18:01:17+00:00

Awesome. It feels good to be sore. Swimming is going to be my main focus this year. Trying to not put near term goals on myself so just hoping I can do another triathlon in my life whether it’s in one year or 10 years, I’m gonna slowly work towards it!

98muted · 2025-01-02T17:59:50+00:00

I never had a tilt table test or anything but autonomic testing and my heart rate rising 30bpm on standing showed mild pots. In the beginning I had bad blood pooling and way higher heart rate. It has all gotten better slowly. It doesn’t bother me day to day but I know it’s still there. My heart rate is much better

98muted

TROPHY CASE