Prusty talks about his upcoming research on a podcast

A

Aidan Walsh

Senior Member
Messages
392
junkcrap50 said:
Well, IVIG without enriched IgM has been used in ME/CFS and has helped people anecdotally. So I think IVIG, especially with IgM, is one of better ones worth trying. But hearing your severe, needing to travel 20 hours to get it (where to? that's a lot of hours), and have limited financial resources, it's hard to be enthusiastic for you to try it. If you weren't severe, and rather instead moderate, and it was closer then I would encourage you to get it. But people who are severe can have very bad often permanent setbacks with travel, and especially since it's so far, 20 hours.

I doubt it would be feasible to use since it has to be given IV and local doctor won't use a outside source, but you can buy a 500mg vial of Penaglobin off IndiaMart for around $75, and larger 5g vials for an unshown price. Subq would probably be okay and safe to do at home.
Click to expand...
I never thought it would be so cheap, IVIG runs in the thousands I have heard. Prusty needs to find also more treatments to kill also whatever is going on. When I mentioned to Dr. Garth Nicholson this he said it is nothing what they found, not any cause he believes its more & he was the one who found the 2 mycoplasma infections
 
junkcrap50

junkcrap50

Senior Member
Messages
1,390
Aidan Walsh said:
I never thought it would be so cheap, IVIG runs in the thousands I have heard. Prusty needs to find also more treatments to kill also whatever is going on. When I mentioned to Dr. Garth Nicholson this he said it is nothing what they found, not any cause he believes its more & he was the one who found the 2 mycoplasma infections
Click to expand...
Well it depends on what your dose is. It's like 400-600mg/kg dose and can be up to 6000mg/kg. So still adds up to thousands. But it's available to buy and ship anywhere.

PS: The 5g vials is not Penaglobin, but rather IgG collected from Indians.
 
Hoosierfans

Hoosierfans

Senior Member
Messages
408
junkcrap50 said:
Well it depends on what your dose is. It's like 400-600mg/kg dose and can be up to 6000mg/kg. So still adds up to thousands. But it's available to buy and ship anywhere.

PS: The 5g vials is not Penaglobin, but rather IgG collected from Indians.
Click to expand...

I’ll weigh in as an IVIG patient. I tried IVIG last year for 9 months. My dose was 1.5 g / kg (so at 55 kg I got about 80 g of IVIG over two days of infusion). Infusions were monthly, via an at home infusion nurse.

We stopped because I wasn’t getting any benefit from it. I’d feel better the day of my infusions, and maybe a day after, and that was it. My ME / CFS is post viral (EBV) onset and I’m severe.

Mine was covered by insurance but I understand if I had to pay out of pocket it would have been somewhere in the $10,000-$20,000 per month.

All that being said, I’m going to forward Prusty’s work to my immunologist and see what he thinks about Pentaglobin. The IVIG product I was given was a common one, Gammunex-C. I’m also going to ask about some of the EBV treatments discussed in the MS trials (Truvada, Frexalimab) and have a retest of my viral labs and IGA / IGM / IGG levels. If I haven’t tested his patience with bombarding him with info and new research, I’ll also ask about the fibronectin and see if there are any approaches to lowering it.

I’ve tried IVIG alone, certain antivirals alone, and of course too many supplements to count. Maybe based on Prusty’s work and others, it’s a combo approach that is needed (ie an anti-viral or retro viral + IGM enhanced IVIG and + possibly something to address fibronectin??)
 
A

Aidan Walsh

Senior Member
Messages
392
Hoosierfans said:
I’ll weigh in as an IVIG patient. I tried IVIG last year for 9 months. My dose was 1.5 g / kg (so at 55 kg I got about 80 g of IVIG over two days of infusion). Infusions were monthly, via an at home infusion nurse.

We stopped because I wasn’t getting any benefit from it. I’d feel better the day of my infusions, and maybe a day after, and that was it. My ME / CFS is post viral (EBV) onset and I’m severe.

Mine was covered by insurance but I understand if I had to pay out of pocket it would have been somewhere in the $10,000-$20,000 per month.

All that being said, I’m going to forward Prusty’s work to my immunologist and see what he thinks about Pentaglobin. The IVIG product I was given was a common one, Gammunex-C. I’m also going to ask about some of the EBV treatments discussed in the MS trials (Truvada, Frexalimab) and have a retest of my viral labs and IGA / IGM / IGG levels. If I haven’t tested his patience with bombarding him with info and new research, I’ll also ask about the fibronectin and see if there are any approaches to lowering it.

I’ve tried IVIG alone, certain antivirals alone, and of course too many supplements to count. Maybe based on Prusty’s work and others, it’s a combo approach that is needed (ie an anti-viral or retro viral + IGM enhanced IVIG and + possibly something to address fibronectin??)
Click to expand...
Does anyone know where the Fibronection test or even the Natural IGM can be tested now in the United Kingdom, does anyone do this privately so I can order this?

What are the level ranges between high and low like normal UK? Why is this illness so damn hard to get under& treated, it seems we all have to crawl up mountains to get anything at all done...
 
Treeman

Treeman

Senior Member
Messages
841
Location
York, England
Aidan Walsh said:
Does anyone know where the Fibronection test or even the Natural IGM can be tested now in the United Kingdom, does anyone do this privately so I can order this?

What are the level ranges between high and low like normal UK? Why is this illness so damn hard to get under& treated, it seems we all have to crawl up mountains to get anything at all done...
Click to expand...
The NHS can test immunoglobulin levels. My wife had hers done by her GP, you'll just need to convince them you need it be describing the expected symptoms of low levels.

Normal Ranges Adult:

  • IgG 6.0 - 16.0g/L
  • IgA 0.8 - 3.0g/L
  • IgM 0.4 - 2.5g/L
 
A

Aidan Walsh

Senior Member
Messages
392
Treeman said:
The NHS can test immunoglobulin levels. My wife had hers done by her GP, you'll just need to convince them you need it be describing the expected symptoms of low levels.

Normal Ranges Adult:

  • IgG 6.0 - 16.0g/L
  • IgA 0.8 - 3.0g/L
  • IgM 0.4 - 2.5g/L
Click to expand...
Treeman, I believe the Natural IGM test Prusty does are not these levels done in IGG IGA IGM it is a completely different test altogether now. I had all the tests you mentioned they were all in normal ranges
 
A

Aidan Walsh

Senior Member
Messages
392
Judee said:
Some in this thread have made it sound like the IgM the Dr Prusty was talking about cannot be tested for in a regular lab which has been confusing to me because I had that same test your wife did.

???
Click to expand...
Judie, I may be wrong, but the Natural IGM is something entirely different from the IGA IGG IGM levels test
 
Last edited:
Treeman

Treeman

Senior Member
Messages
841
Location
York, England
Aidan Walsh said:
Treeman, I believe the Natural IGM test Prusty does are not these levels done in IGG IGA IGM it is a completely different test altogether now. I had all the tests you mentioned they were all in normal ranges
Click to expand...

It maybe a different test, but is it not just testing the same thing?

My IgM is low, my wife's were in the normal range. But we've both been diagnosed with ME/CFS.

I think prusty said he discovered they were generally low (correct me if I'm wrong) but I don't think that everyone diagnosed with ME/CFS will have low IgM.
 
O

Osaca

Senior Member
Messages
344
There were discussions within this post about whether these Prusty things are testable, the answers were: no.
Osaca said:
No. It's a self developed ELISA test that isn't available anywhere in the world. Details are described in the TLC interview and in the paper.
Click to expand...

Prusty is speaking specifially about natural IgM and even more specifically natural IgM against fn1. These things are proper subsets of just testing for IgM.

Think of it like this: All humans are animals, but not all animals are humans. If you now have a test to see if something is an animal that doesn't have to tell you anything about whether that thing is actually a human.
 
Last edited:
A

Aidan Walsh

Senior Member
Messages
392
I think Prusty needs to get some mouth swabs from genebygene.com & test these patients for copies of the tryptase genes they found 2 or 3 at the NIAID/NIH back in 2016 Published in Nature. Hereditary Alpha Tryptasemia Syndrome (HATS) we are all supposed to have only one copy. It is not the tryptase blood test I tested 10 Normal, they said anything above a 5 or 6 is highly likely copies of this gene.

They have videos on YouTube key in the names or tryptase. The 10 is only a cut-off point Science researchers say it should be lower, maybe a 10 is a 20 or a 30 if copies & they mention Allergies, histamines, MCAS even anaphylaxis shock.

The work was also done by the Immunology Group at Manchester Hospital UK some are the authors of the paper, there are some groups on facebook even one in Paris, France. It is known also to give heart issues as well & the genes can run in families, some sick others not yet, I guess.

The Team at NIAID their job is to find causes of Allergic diseases this is their number one job then they found this. I have the test here I will do this hopefully soon, the last I heard it was $169.00 it takes 6 to 8 weeks for results back you need a Doctor to fill out the form key in tryptase here www.genebygene.com
 
A

Aidan Walsh

Senior Member
Messages
392
The NIAID Teams feel specific Stem Cells for tryptase copies errors I think splicing will likely result in a Cure. I think all of us on here should run this test & also do the D-Lactate Acid blood test if possible to see if we have this as well or not it was Avenger on here who wrote about his positive test he is in remission now he also took with the combo antibiotics baking soda in water daily
 
O

Osaca

Senior Member
Messages
344
Judee said:
So like how there are antigen tests that test for response to specific viruses? Only this one is testing for fn1?
Click to expand...
I think that comparison is sensible, but perhaps someone with a biomedical background would disagree.

What they first used to detect their nIgM-fn1 findings were a microassay and immunoblotting (remember all of this was true if someone had Covid independently of whether their developed LC). Then to do it more efficiently they developed an ELISA assay that does the same. None of these things are currently available to patients.
 
Last edited:
B

Blueberry3

Messages
8
Cipher said:
Very interesting, can you share more details?
Click to expand...
If you look up Pentaglobin on here you can find a woman who took it after getting me from Parvo and had a remission for a few months, meaning she didn't have any symptoms. I can't remember where the other person was, but I found it at some point, I could track it down again but I'm too tired right now.
 
B

Blueberry3

Messages
8
Aidan Walsh said:
Have no idea why people write remission that is not remission when the illness comes back after the infusions
Click to expand...
Remission would be a complete cessation of symptoms from treatment or intervention, a cure would be if it were permanent. Some people get their MS into remission through medications and lifestyle interventions, but they still have MS, it isn't gone and can come back, especially if they stop whatever treatments were working. Many autoimmune conditions can go into remission and come back.
 
V

Vlad83

Messages
56
Blueberry3 said:
If you look up Pentaglobin on here you can find a woman who took it after getting me from Parvo and had a remission for a few months, meaning she didn't have any symptoms. I can't remember where the other person was, but I found it at some point, I could track it down again but I'm too tired right now.
Click to expand...
Are you referring to this post: https://forums.phoenixrising.me/thr...rom-treatment-by-any-doctor.35949/post-567065 ?

She did not say it was IgM-enriched Pentaglobin. Not all Pentaglobin formulations are IgM-enriched, they make "regular" IVIG too.
 
You must log in or register to reply here.
Back