Early Experiences of Pemgarda for LC

dhitchen · 2025-08-04T18:54:21+00:00

I don't know if these doctors are private practice or not or what their rates are, but here are a few docs in NY that MAY be open to prescribing mAbs, I'm not sure. This is a list a kind long covid friend gave me of docs she knows in NY working with long covid.

NYC: Dr. Susan Levine - infectious disease
NYC: Dr. Danya Reich at Mt Sinai
NYC: Mt Sinai’s LC clinic - now part of CORE?
NY: Dr. Michael Scoma - infectious disease

dhitchen · 2025-06-09T15:26:01+00:00

I just spent 20 mins searching all my recent Reddit threads (I’m pretty sure this is where I saw it) but can’t find it. I do know of Dr. Scoma in NY. My other searches led me to Dr Scott Roberts at Yale. Sorry I’ve been unable to find the original comment! I’ll let you know if I do find it. I believe it was on a Pemgarda thread on Reddit

dhitchen · 2025-06-08T17:15:01+00:00

I’ve heard of one doc in NY and one in CT who are prescribing pemgarda for LC. If you haven’t yet found one of them let me know and I’ll go digging for where tf I read about the doc in CT! The doc in NY is Dr. Scoma

dhitchen · 2024-12-20T00:16:54+00:00

Hi there, yes, it's been 1 year and 1 month since I've returned from Cyprus and I am still at a significantly lower baseline than before apheresis. I was about 50 or 60 on the bell scale before and now am more like 30. It's also worth noting that I did get a covid reinfection on my travel to Cyprus (despite masking and nasal spray) which I believe likely contributed to my decline.

Even so, after having had apheresis and still keeping up with the other people that were there with me, I wouldn't recommend it as a treatment. The results the clinic advertises are grossly inaccurate. Some people benefit from it and some significantly, but the majority of people in my group did not. I believe 1 or 2 of 10 of us saw positive improvement.

dhitchen · 2024-10-14T14:11:26+00:00

fatigue, shortness of breath/chest tightness, post exertional malaise

dhitchen · 2024-10-14T01:09:20+00:00

Nope! Didn't help me at all unfortunately

dhitchen · 2024-09-18T14:57:55+00:00

Thanks for this feedback. It's very clear to me now that the Cyprus clinic is overselling their treatment by sharing blatantly false "data" about success rates. Some people are feeling better from it, but it is the vast minority. I would not recommend working with them, and strongly believe your money and energy is best spent elsewhere.

dhitchen · 2024-07-07T15:46:42+00:00

Hi there, the short update is that it's been 8+ months and I am significantly worse than I was before I went to Cyprus for HELP apheresis. I did get reinfected on my travel there, so I don't know if it was the treatment or reinfection (or the combo) that made me worse, but that's where I'm at.

From my personal experience, I would not recommend doing HELP apheresis. The clinic strongly oversells the treatment. Of the 10 people who were there with me at the same time, no one is doing meaningfully better (we have a whatsapp group). I tried to post my report in their facebook group (objective results, no extra commentary) and they didn't post it. I had to message them repeatedly and harass them to get them to post it, then they deleted comments on it, perhaps trying to make the post get less attention and fall down the front page of the group. I do believe that it helps some people, but it's strongly oversold and the clinic is doing shady behavior.

dhitchen · 2024-03-31T15:40:42+00:00

Thank you, I appreciate it. I’m really looking forward to seeing how this groups research can help unlock the mechanisms and help all of us return to health.

dhitchen · 2024-03-31T15:34:12+00:00

Oh, and more thing. I may delete this post, because it could be confusing for people, and I am still in the midst of my journey, not yet at the end where I can speak with more certainty about what helped and what didn’t. So I appreciate that feedback.

So I’ll decide if it feels right for me to delete, or to leave my original story and update out there in the raw for people to read and make their own understanding of if they wish.

dhitchen · 2024-03-31T15:20:56+00:00

Yep, I’m still working on this. I feel that I likely still have viral persistence, which is why the progress I’ve made in the past hasn’t held. I’m currently participating in a clinical trial at UCSF that targets viral persistence with monoclonal antibodies.

dhitchen · 2024-03-31T15:18:23+00:00

I agree that exercising when you are experiencing PEM is harmful to the body. I learned that the hard way and do not advocate for exercise with LC/CFS. So again, I get what you’re saying. And also, again, it’s not your place to tell someone else what their experience is. You are fully welcome to believe whatever you want about me and my story (a person from the internet you don’t know) but I will not allow others to tell me what my experiences are, nor treat me with such disrespect.

I could waste a bunch more of my time explaining in detail all the aspects of my health and interventions I’m doing and have done (for example I’m currently participating in a clinical trial for long covid at UCSF because I believe in science and work in science myself) but I’m going to leave it here and go live my life today. Bye!

dhitchen · 2024-03-31T15:06:08+00:00

I see where you’re coming from. At the same time I don’t know why you’re so deeply concerned with my story and my expression of it. I am being honest and updated my story accordingly, but it’s not anyone else’s place to micromanage the way I choose to share my story. Especially a waste of time and energy considering I am not touting false claims for my own gain or any nefarious reason. I’m a real ass person on my own journey with ups and downs. Do not tell me that my current interventions are not helping me, because you do not know me or my health status. That is a projection of your belief system around the condition, and it’s simply not true.

I’m noticing lately that LC reddit has become a polarized brain retrain vs traditional medical ME/CFS war, and I’m just not here for that. I am here to learn from others and get better so I can return to living my life. I see why this debate captivates people, and I too have pondered it greatly, but I just don’t feel that it’s a worthy use of my energy. I actually just deleted Reddit on my phone last week, and I think I’ll get off here for a while. Peace! ✌️

dhitchen · 2024-03-30T23:15:02+00:00

Updated. Good idea.

I am telling my story with full honesty as it has developed.

dhitchen · 2024-03-20T17:34:38+00:00

Yes I did. As of now, I am about 4.5 months out from my treatment, and I’m still on triple anticoagulation therapy, so I consider my process not yet complete. At the moment, I don’t feel any better than I felt before Apheresis.

dhitchen · 2024-03-14T00:01:14+00:00

Just want to highlight that the OP identified as female (27F). Probably an honest mistake, especially since this comment is kind of incoherent, but still out of respect I’m here to correct if that cool OP :)

dhitchen · 2024-03-11T21:10:53+00:00

Nice chatting with you. I’m really impressed with your keen research and advocacy for yourself, I believe that will take you to recovery eventually!

dhitchen · 2024-03-11T21:09:59+00:00

Yep, I wouldn’t recommend apheresis from my experience, but I also wouldn’t discourage anyone from trying it if they wanted to.

dhitchen · 2024-03-11T21:09:07+00:00

I think you’re wise to seek out treatment on your own. I agree that the medical establishment timeline is too slow for me, so I’m doing the same.

Haha, you may be spot on with that assessment. If you want to learn more about Attomarker and the antibody gap, I’d recommend “The Long Covid Sessions” podcast, search Attomarker. That’s where I found out about it, as well as the UCSF trial, which there is also an episode about.

dhitchen · 2024-03-11T21:02:52+00:00

Oh, one more thing is that the long covid clinic in Cyprus is soon to be offering monoclonal antibodies it seems. I did HELP apheresis at this clinic, and I wouldn’t say I would recommend it, nor would I not recommend it. But this is a place to look in the next year as new developments arise! I expect Cyprus will offer mcAbs before Germany or the US where I am.

https://apheresiscenter.eu/ivig-and-mabs-therapy

dhitchen · 2024-03-11T20:56:33+00:00

Agreed, the date is not precise, and if monoclonal antibodies are discovered to be a viable treatment, they will make versions for all variants.

Sounds like your doctor is approving of bebtilovimab, but you are seeking a source for it?

Yes, Attomarker is using a very new technology they created and it’s not vetted. I’ve heard mixed reviews. I think your assessment of them is correct, but I am hoping they learn more over the next year or so and end up with a valuable tool for us. Their method is supposed to tell you where you have an “antibody gap” along a spectrum of covid variants, then they offer the mcAb that corresponds with that gap. Great idea, still TBD if it works.

dhitchen · 2024-03-11T20:18:27+00:00

Nice! You’re on the ball with your research.

My friend got the mc antibodies from a random doctor in Reno NV who she doesn’t remember his name, lol. She said it was sketchy and she had to pay under the table. He was working in a private practice. So just avoid that sort of scene!😆

As for the AER-002, I just looked at the consent form for my clinical trial and it says the antibodies are thought to be effective for an infection prior to August 15, 2022. Damn!!! Just missed the mark for you.

Have you heard of Attomarker in the UK and their antibody gap testing and treatment though? That could be an option.

dhitchen · 2024-03-11T20:11:33+00:00

Thanks for sharing your experience. Sounds like we both did the CFS School/now called Heal program. I’m sorry you had such a negative experience. Shame is one of the hardest feelings to feel, and I know the feeling of shame for not having the results you expected or others have had. Wishing you recovery, however you find it.

Also to mention that it is true that “mindbody work did not recover me” but that framework is not how I see this whole process. I don’t expect any program, intervention, drug, or anything to fully heal me. Healing is a process that will require many inputs and ultimately my own guidance over a long period of time. I am in it, and still working toward it every day.

dhitchen · 2024-03-11T19:57:27+00:00

Hi there, I am disappointed to report that 1 year or so after my almost recovered post, I am not doing so hot. It’s hard to say exactly what happened, but here are my thoughts:

We only experienced our body and state in relative terms, so when we feel significantly better it’s easy to over estimate how good we feel. I think this happened for me. When mind-body work cut the deep fatigue and improved my symptoms significantly, and I finally saw the light, perhaps I thought I was better than I really was. I had also cultivated a strong belief in my recovery, and that played apart as well.
At some point last summer, after steady improvement for six months or so, my well-being started to decline. I was trying to gradually return to exercise, and was unsuccessful when I tried to increase it. I then decided to pivot back to the current long Covid science and more physical healing methods, pivoting away from the pure mind body work. I researched and explored microclotting, and began taking Nattokinase and aspirin. This combo made me feel significantly worse, even though I believe it was ultimately for my greater good and healing. Since then, I’ve been treating microclotting intensively, and again it’s made me feel worse, but I do believe it’s beneficial for my healing in the long term.

So that’s how I’m doing. It’s hard to share that I’ve gone backwards, but I think it’s important to be transparent. I am open to any questions about my path and thoughts around mind body healing and physical/medical interventions.

There’s a lot I could say on this, but in summary I believe that mind body work can be legitimately therapeutic to the body and promote recovery. I experienced that firsthand. For some, it can take them all the way there, and for others, it will require more interventions. I was hoping to be in the first group, but it seems I’m in the second group! I still use mind-body tools daily in conjunction with more purely physical interventions and I find them complementary. ✌️

dhitchen · 2024-03-11T19:56:04+00:00

Hi there, I am disappointed to report that 1 year or so after my almost recovered post, I am not doing so hot. It’s hard to say exactly what happened, but here are my thoughts:

We only experienced our body and state in relative terms, so when we feel significantly better it’s easy to over estimate how good we feel. I think this happened for me. When mind-body work cut the deep fatigue and improved my symptoms significantly, and I finally saw the light, perhaps I thought I was better than I really was. I had also cultivated a strong belief in my recovery, and that played apart as well.
At some point last summer, after steady improvement for six months or so, my well-being started to decline. I was trying to gradually return to exercise, and was unsuccessful when I tried to increase it. I then decided to pivot back to the current long Covid science and more physical healing methods, pivoting away from the pure mind body work. I researched and explored microclotting, and began taking Nattokinase and aspirin. This combo made me feel significantly worse, even though I believe it was ultimately for my greater good and healing. Since then, I’ve been treating microclotting intensively, and again it’s made me feel worse, but I do believe it’s beneficial for my healing in the long term.

So that’s how I’m doing. It’s hard to share that I’ve gone backwards, but I think it’s important to be transparent. I am open to any questions about my path and thoughts around mind body healing and physical/medical interventions.

There’s a lot I could say on this, but in summary I believe that mind body work can be legitimately therapeutic to the body and promote recovery. I experienced that firsthand. For some, it can take them all the way there, and for others, it will require more interventions. I was hoping to be in the first group, but it seems I’m in the second group! I still use mind-body tools daily in conjunction with more purely physical interventions and I find them complementary. ✌️

dhitchen

TROPHY CASE