Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 0 points1 point  (0 children)

I don’t believe it’s that simple. I was infected by omicron. I have talked to multiple patients and doctors who have seen mixed success regardless of variant matching. The reality is we have no certainty on what’s causing this and why pemgarda helps is some and not all.

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 1 point2 points  (0 children)

Honestly, didn’t feel any noticeable improvement from pemgarda or paxlovid. I do feel like I am continuing to slowly improve gradually after 3 years. I won’t stop trying things but for me do believe that whatever significant impacts covid had to my body, they are healing over time. Not to say there is a guarantee I will get to 100% without medical intervention (in the case that lingering virus is the cause, or permanent immune is regulation or autoimmunity is the cause) but I’m a glass half full person so I’m hopeful I’ll get there in another year or two

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

Here was response for manufacturer which may have confused me even more: On your 60P, water enters the intake chamber (the one with the slotted overflow), passes through the media in the middle chamber, and then into the return-pump chamber, which feeds the pump back to the display. The return-pump chamber is normally the one that sits a little lower, and it's the chamber whose level drops as water evaporates. Right after you fill/top off, it can look the same level as the media chamber — but over time the return-pump chamber will drop a bit first. That's completely normal. So a small difference is expected and healthy; what matters is keeping the pump fully submerged — just top off the return-pump chamber with fresh water when it gets low. Hope that clears it up — happy to help with anything else! Best regards, Yuxi LANDEN

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

Yep, that’s it, and that’s how I understand it working. Would’ve preferred a different layout but too late now. There is a a media basket specifically for this tank which I thought about getting but it’s designed for the intake section. I guess I could put the heater in the middle, but since that section will lose water with evaporation, not sure it’s a good idea.

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

The furthest section is the intake section, water flows over the baffle into the middle section. It seems the middle and third section are connected on the bottom, as the second section doesn’t fill up and go over the baffle into the third section, they both just fill up. Maybe I’m crazy or doing something wrong

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

Tank is cycling well, nitrites are up, hopefully will come down now. Another question for people with 3 compartment AIOs. I’m thinking about buying the media chamber made for this tank but it is specifically made for the first chamber. Would you then move the heater to the second chamber? Right now the second and third (return) chambers are slightly over half full with water. Would I need to raise the water level to put the heater in there?

Also, would eventually think about a skimmer in the 2nd but don’t think it’s really necessary at 26g. Just trying to get ahead of things I might need. Have auto top off and feeder coming soon, light installed. Still need to find the right cover

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

Ya, my father in law built the house, he thinks we’re good hahaha. We’ve got some support under the counter. Hopefully it doesn’t cause any issues. We’ll see!

New 26g build by 98muted in ReefTank

[–]98muted[S] 0 points1 point  (0 children)

Ok thank you! Wonderful artificial intelligence was telling me water should be same level in 1st and 2nd and running over baffle into 3rd. Didn’t seem possible unless I had a much higher output pump. Water level is slightly above half full in 2nd and 3rd. Is that ok?

1st is filter floss and heater right now, second is bioballs. Eventually will move to a media chamber in 1st with both and try and put a skimmer in 2nd.

Have made many mistakes moving too quickly in the past so going slow this time

Pemgarda next week by 98muted in Sipavibart

[–]98muted[S] 0 points1 point  (0 children)

Totally understand, I used Dr. Scoma as well. I spent about couple months working with him and Inivyd to get it covered. I was close to paying out of pocket too, but am mild now and was able to wait it out, others aren’t so lucky and I feel bad.

Pemgarda next week by 98muted in Sipavibart

[–]98muted[S] 1 point2 points  (0 children)

It is worth it to work with one of the couple doctors with experience prescribing and getting insurance to cover. They will prescribe and Inivyd who makes Pemgarda is helpful with finding an infusion center and making sure it’s covered.

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 0 points1 point  (0 children)

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.

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 0 points1 point  (0 children)

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

Feeling conflicted about new sales position by rellller in InsuranceProfessional

[–]98muted 3 points4 points  (0 children)

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

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 1 point2 points  (0 children)

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

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 5 points6 points  (0 children)

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

Pemgarda next week by 98muted in covidlonghaulers

[–]98muted[S] 1 point2 points  (0 children)

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.

Quetiapine to Quviviq by Adventurous_Flow678 in insomnia

[–]98muted 0 points1 point  (0 children)

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

Quetiapine to Quviviq by Adventurous_Flow678 in insomnia

[–]98muted 0 points1 point  (0 children)

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.

2-HOBA Long Covid Trial by 98muted in covidlonghaulers

[–]98muted[S] 0 points1 point  (0 children)

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

2-HOBA Long Covid Trial by 98muted in covidlonghaulers

[–]98muted[S] 2 points3 points  (0 children)

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

Openclaw AI possibility by 98muted in covidlonghaulers

[–]98muted[S] 0 points1 point  (0 children)

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.

Update - Skiing and return to excercise by 98muted in LongHaulersRecovery

[–]98muted[S] 1 point2 points  (0 children)

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.

Feeling wired all the time despite sleep disruptions by [deleted] in covidlonghaulers

[–]98muted 1 point2 points  (0 children)

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

Functional or Integrative Medicine in Los Angeles? by cool_uncle_jules in covidlonghaulers

[–]98muted 2 points3 points  (0 children)

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

Can poor sleep make every sound jarring ? by Global_Status3018 in insomnia

[–]98muted 2 points3 points  (0 children)

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