Prusty talks about his upcoming research on a podcast

[Judee]

She did not say it was IgM-enriched Pentaglobin. Not all Pentaglobin formulations are IgM-enriched, they make "regular" IVIG too.

Idk.

From https://go.drugbank.com/drugs/DB15865

Pentaglobin, also known as IgM-enriched immunoglobulin, falls under a group of polyclonal immunoglobulin preparations.1 It is comprised of immunoglobulin G (IgG) and immunoglobulin A (IgA) while also being enriched by immunoglobulin M (IgM).3

 

[Vlad83]

I stand corrected, Pentaglobin has 6 mg of IgM per ml, which is apparently a lot. Normal IVIG only has trace amounts of IgM.

 

[Judee]

I stand corrected, Pentaglobin has 6 mg of IgM per ml, which is apparently a lot. Normal IVIG only has trace amounts of IgM.

All of this is so confusing.

I didn't even know there was an IgM version until this thread so I can understand.

 

[dr. Arf]

Has anyone seen Prusty Presentation?

I found it very interesting. Maybe it is a repetition of Findings and Hypothesis he has mentioned before, but for me, it was very clarifying.

Specifically this slide, which IF it is a valid model of disease mechanism, is very good.
– It’s the second part of the presentation.
- first part is on his fibronectin lab Research findings

 

[Forummember9922]

It is a privilege to hear from him again. I am surprised there were no audience questions about future treatment implications. Probably a reach but I wonder if theres a connection between his bone marrow observations and folks who cite dental issues or dental surgery as being relevant to their story

 

[Treeman]

I am surprised there were no audience questions about future treatment implications.

I've just watched the above presentation.

If I'm not mistaken, it's still taking about the initial infection being the problem and the subsequent reactivation of infections. So therefore, treat the initial infection / infections and give our body time to recover?

 

[annaloecher]

I got Pentaglobin about a month ago and wanted to share my experience:

I got 650 ml of Pentaglobin 50 mg/ml in total divided over three consecutive days. My bodyweight is 46 kg. I have pre pandemic ME. No other conditions. No immunodeficiency. Wanted to try it because of Prusty’s research and because of antiinflammatoy effects of ivig in general. Payed out of pocket.

I had no effects from the Pentaglobin at all but crashed horribly from the exertion of getting the infusions done. I’m very very severe and maybe my Crash hindered possible positive effects. Maybe a less severe person would have more success idk.

Definitely not a miracle drug. For me it was just an expensive crash.

I’m sorry I cannot answer any questions. Can barley type due to my severity.

 

[godlovesatrier]

Sorry you went through this but thanks for sharing the information. Hope you are able to recover ok.

 

[Judee]

Definitely not a miracle drug. For me it was just an expensive crash.

I'm sorry it doesn't seem to have worked for you.

I'm not sure if others can chime in on their use of IVIG (reg kind) and say whether they had an immediate improvement or if it was a worsening before the drug kicked in as sometimes happens with treatments?

Maybe @Treeman with your daughter? You said it took about two months for her to see some improvements was there a worsening before that?

 

[Aidan Walsh]

I went through all of the testing for actually CVID & Immunology told me all my results were read as normals they tested IGA IGG IGM & other counts.

I do not know what he means by saying IGM Natural. I now wonder if we have vascular compressions like May Thurner Syndrome, Nutcracker Syndrome, Mals & the folate deficiency on wheat, synthetic folic acid & need off all wheat/gluten-free folic acid added we methyl folate & methyl B-12 & folate food, vegs-fruits. I know someone who is on long-term IVIG for CVID & another PID with IVIG, both are not well.

Many on Nutcracker Syndrome groups FB say many MS have NC now diagnosed. My left stomach swells & kidney sharp pains stabbing come/go my left kidney is enlarged. I sent off the 23andMe test today now wait months on the esults. I will look for HFI & Folate deficiencies

 

[Aidan Walsh]

Has anyone seen Prusty Presentation?

I found it very interesting. Maybe it is a repetition of Findings and Hypothesis he has mentioned before, but for me, it was very clarifying.

Specifically this slide, which IF it is a valid model of disease mechanism, is very good.
– It’s the second part of the presentation.
- first part is on his fibronectin lab Research findings

View attachment 52776

Is Fibronectin elevated, low, or deficient? Is IGM Natural the same as IGM?

2 published papers from Tulane University Hypermobility Clinic on Folate Deficiencies/Methyl Folate in EDS & other Long COVID all have the same.

Folic Acid is making a lot of people sick It is everywhere in food, vitamins/minerals Genetic mutation. In the UK it is somewhat restricted, a lot of companies will not add this to foods.

I know of one Woman for 48 years she had been told she had ME/CFS, and she was finally diagnosed with HFI Hereditary Fructose Intolerance HFI.
I know one Woman on Facebook who had HFI from her raw data from 23andMe, she then requested the test. Her whole family did the 23andMe, I think her Mom was carrier xx

 

[Treeman]

Maybe @Treeman with your daughter? You said it took about two months for her to see some improvements was there a worsening before that?

Hi, as I understand it, it's usual to not see any improvements for a few months.

I'm on the severe end of moderate and had no crash from infusing, but did have a reaction to the product, which I take anti histamine for.

Improvements come slowly after the first few months, building over several months. My daughter is about 90% after 13 months.

I started to notice some slight improvement after about 4 months but then caught an infection and almost a year later still infusing see no improvements, which does happen to many.

 

[mitoMAN]

Hi, as I understand it, it's usual to not see any improvements for a few months.

I'm on the severe end of moderate and had no crash from infusing, but did have a reaction to the product, which I take anti histamine for.

Improvements come slowly after the first few months, building over several months. My daughter is about 90% after 13 months.

I started to notice some slight improvement after about 4 months but then caught an infection and almost a year later still infusing see no improvements, which does happen to many.

Is that IVIG or the special IgM enrichiched Pentaglobin?
(Very different!)

 

[Treeman]

Is that IVIG or the special IgM enrichiched Pentaglobin?
(Very different!)

S C I G Cuvitru

 

[mitoMAN]

Okay good to know as that's very different from the IgM discussed
(SCIG and IVIG are IgG and filtered for igM)

 

[Sizzle]

Hi, as I understand it, it's usual to not see any improvements for a few months.

I'm on the severe end of moderate and had no crash from infusing, but did have a reaction to the product, which I take anti histamine for.

Improvements come slowly after the first few months, building over several months. My daughter is about 90% after 13 months.

I started to notice some slight improvement after about 4 months but then caught an infection and almost a year later still infusing see no improvements, which does happen to many.

Your daughter was severe?
and for how long?

 

[Treeman]

Your daughter was severe?
and for how long?

No she wasn't severe, probably mild but near the moderate end. Now mild in the middle considering her energy levels.

The possible most noticeable effect was on her mental health.

She's 14 now, going through puberty and having to deal with all that on top of a dysfunctional immune system.

 

[Forummember9922]

https://x.com/BhupeshPrusty/status/1803318554722275635

As a team, we are determined to understand the molecular mechanisms behind ME development. We have already added four new young colleagues to focus on ME. I will introduce you to them and their projects in the coming weeks as we continue our collective effort in this research.