Prusty talks about his upcoming research on a podcast

[Treeman]

I get immunoglobulin therapy. I'm no expert but what I do understand is that this illness is far more complicated than adding IgM or increasing it to find a full cure.

What I do know a bit about it is evaluating risk. If I was in your position and severe I wouldn't be traveling so long and far based on an unproven theory. Not also to add the high price of the treatment with limited resources.

 

[Osaca]

I have to agree with @Treeman. I want to emphasize that the data presented in the preprint was not very good or convincing. However, they also haven't yet updated the preprint but it has been known that additional data is available. You might want to ask Prusty whether this data is available or how far into the publishing process they are.

Personally, I'd probably be more inclined to ask Scheibenbogen, who is quite responsive in her emails and who albeit being part of this work doesn't seem to be heading into the Pentaglobin direction.

 

[Sizzle]

immunoglobulin therapy normaly doesn't have the amount of IgM as pentaglobin has, right ?

 

[Aidan Walsh]

Has anyone else tried Pentaglobin to try and treat the IGM deficiency that the Paper Found? I recently got the opportunity to try Pentaglobin, and I know a few people have said they have gone into remission on it, but I think both of them were Parvo patients which makes me worried it could be a Parvo specific treatment. The theory is that it'll address the low natural Igm that was identified in the Prusty Preprint, but I was wondering if there was any merit to this theory? It's high risk for me as I'm severe and would have to travel 20+ hrs to get the treatment, its also pricey and I have limited resources. Is this a treatment anyone else is looking into trying, or is it quackery?

I am not sure on all of Prusty's findings I am not saying he is wrong but I did mention his work to a top Researcher his response was is all he is finding is leftover garbage not any causes. The IGM Natural is not something you can go in & test in any labs even privately. My IGM IGA IGG are in normal ranges but yes these are not the same test he uses.

 

[Aidan Walsh]

There are also so many other things being found the list is so long one is D-Lactate Acid, others Eagle Syndrome, Pineal Gland Tumors, spontaneous Spinal Fluid leaks, tethered cord, (TOS) Thoracic Outlet Syndrome, Mals, one other gut major compression, Ehlers Danlos Syndrome complications, EDS Tenascin X EDS4, EDS3 EDS Classic, the list is more.

Why is everyone based on biological causes when none have ever been found. What about C. Pneumonaie, both mycoplasmas incognitus & fermentins, metal allergies, histamine intolerance, GSD types numerous ones. (HFI) Hereditary Fructose Intolerance, (HATS) Hereditary Alpha Tryptasemia Syndrome copies of the tryptase genes? Why is Prusty & others not looking for these? Answer they are looking for *money profits patents/sales

 

[Aidan Walsh]

Some even have (CVID) Common Variable Immune Deficiency, (PID) Primary Immune Deficiency or Lyme infections, (MS) Multiple Sclerosis, some have RADIATION SICKNESS that is never spoken/written about here 'ever.' The National CFIDS Foundation is convinced Radiation is the CAUSE CAUSE CAUSE, their website is all about it

 

[Aidan Walsh]

I have to agree with @Treeman. I want to emphasize that the data presented in the preprint was not very good or convincing. However, they also haven't yet updated the preprint but it has been known that additional data is available. You might want to ask Prusty whether this data is available or how far into the publishing process they are.

Personally, I'd probably be more inclined to ask Scheibenbogen, who is quite responsive in her emails and who albeit being part of this work doesn't seem to be heading into the Pentaglobin direction.

She is an expert in immune deficiencies with regards to Gamma, maybe she has not commentated about Prusty but her name I believe is also on the paper, correct me if I am wrong. If this is such a breakthrough then Why is it taking so long for the World to know or other medical Doctors not treating this immediately?

 

[junkcrap50]

She is an expert in immune deficiencies with regards to Gamma, maybe she has not commentated about Prusty but her name I believe is also on the paper, correct me if I am wrong. If this is such a breakthrough then Why is it taking so long for the World to know or other medical Doctors not treating this immediately?

IgG containing IgM (Pentaglobin) is only available in a few countries. And IgG is very expensive.

 

[Aidan Walsh]

Yes, extremely expensive even Gamma Globulin. I know someone who is on it for life for CVID infusions & not easy to take either. They call Gamma Globulin for short IGG Invusion Gamma Globulin

 

[Oliver3]

Some even have (CVID) Common Variable Immune Deficiency, (PID) Primary Immune Deficiency or Lyme infections, (MS) Multiple Sclerosis, some have RADIATION SICKNESS that is never spoken/written about here 'ever.' The National CFIDS Foundation is convinced Radiation is the CAUSE CAUSE CAUSE, their website is all about it

Radiation from what tho?
I agree with what you're saying btw in your other statements about eds and the plethora of stones still unturned but all of us sufferers think should be

 

[Aidan Walsh]

Radiation from what tho?
I agree with what you're saying btw in your other statements about eds and the plethora of stones still unturned but all of us sufferers think should be

Likely from fallouts or other sources or maybe exposure to someone sick or in the food. Chornobyl 3 Mile Island Japan & countless other disasters. Could even be in the water centers. I know the Hamilton Team

Radiobiologists these are the ones who entered the reactors first called in to the Japan Tsunami they Published on Chronic Fatigue Syndrome saying it was an immune deficiency from Radiation they did urine

samples all were positive, Wayne State University said the exact same things years ago in GWI/ME/CFS patients. I am in total shock no one talks about this I am appalled its like it is kept hush. If this is actually True I will sue for 100's of Millions. Gail Kansky runs The National CFIDS Foundation in Needham, Ma. she was

invited to NIH years back she more or less told them to Go F themselves politely, she wants nothing to do with any GOVS. I argue with her all the time saying it's not true, she gets mad at me. All her focus is RADIATION for years she was on about ciguatera fish poison now on this instead I cannot talk to her it is

always an argument. Internal ionizing Radiation Sickness & countless people have got sick with ME/CFS in numerous lab settings. I mention EDS to her, she flips her switch off. She knows nothing about Research she has someone as her Medical person who convinces her it is this as CAUSE.

You do not see any CFIDS Doctors talking about this the total idiots or Klimas either if they did they would be DEFUNDED 100% or SHOT. Any time one mentions other Teams she is in complete denial she actually tells people she has CFIDS they must look at her like a lost cannon she says C FIDS like it is chocolate ice cream flavors.

All of the Research is on her website including the Papers, there is one also on there published by a double PhD from Egypt who tested all ME/CFS patients she funded everyone had the Leukemic marker which he called a slow ride years to AML Acute Myeloid Leukemia he got 95% in his lab to a treatment he could not get to 100% then they left him looking for Why then went to the Radiation Team.

Dr. David Bell the SOB knows its radiation sickness he quietly tests patients & tries to treat patients, I cannot stand him he is Scum, he is a patient hiding behind his patients coming across as some Guru who sells books the idiot.

There is another City in Russia that had a worse disaster it is not a Ghost Town, Putin told the US Government they told him do not say anything to anyone it was kept quiet 'these scums'

 

[Aidan Walsh]

I have to agree with @Treeman. I want to emphasize that the data presented in the preprint was not very good or convincing. However, they also haven't yet updated the preprint but it has been known that additional data is available. You might want to ask Prusty whether this data is available or how far into the publishing process they are.

Personally, I'd probably be more inclined to ask Scheibenbogen, who is quite responsive in her emails and who albeit being part of this work doesn't seem to be heading into the Pentaglobin direction.

going to sleep now my friend was just now diagnosed in hospital USA with Protein C & S Deficiency, look to see if it is tied to the IGM Natural Protein Deficiency

 

[Blueberry3]

IgG containing IgM (Pentaglobin) is only available in a few countries. And IgG is very expensive.

Yea it is only available in a few countries, but I will have access to it if I decide to fly, and it is very expensive but if it has a chance of working that's not an issue, I'd make it work to get my quality of life back. The only people I can find who have done it have gone into a complete remission for the period they had access to it.

 

[Blueberry3]

immunoglobulin therapy normaly doesn't have the amount of IgM as pentaglobin has, right ?

no immunoglobulin usually only has trace amounts of IgM, Pentaglobin is enriched. A few people have had short remissions on Pentaglobin, and the theory before Prusty's research came out was that Pentaglobin on its own has massive anti-inflammatory effects, but a few people have preposed it as a possible treatment since the albeit, underwhelming, pre print came out.

 

[Treeman]

My wife has IgM within the normal range, but still has ME/ CFS.

As I understand it, IgM is part of the innate immune system and is one of the first antibodies to attack pathogens. However there are other parts of the immune system that also control infections. Probably, if it was solely an infection causing ME/CFS or long COVID then the whole immune system would need to be misfiring not just the IgM.

We all are desperate for a way to good health, but I don't think IgM is the answer.

 

[Aidan Walsh]

no immunoglobulin usually only has trace amounts of IgM, Pentaglobin is enriched. A few people have had short remissions on Pentaglobin, and the theory before Prusty's research came out was that Pentaglobin on its own has massive anti-inflammatory effects, but a few people have preposed it as a possible treatment since the albeit, underwhelming, pre print came out.

What happens when they stop this do they become sick? In CVID or PID it's for life Gamma infusions. Does anyone know if their IGM Antibodies or levels were normal? Where is it available & estimate costs per infusion I know IVIG takes all day for the infusion like 8 hours time

 

[Cipher]

The only people I can find who have done it have gone into a complete remission for the period they had access to it.

Very interesting, can you share more details?

 

[Aidan Walsh]

Very interesting, can you share more details?

Have no idea why people write remission that is not remission when the illness comes back after the infusions

 

[Cipher]

Have no idea why people write remission that is not remission when the illness comes back after the infusions

Here's the definition of the word 'remission':

a temporary diminution of the severity of disease or pain.

 

[junkcrap50]

Yea it is only available in a few countries, but I will have access to it if I decide to fly, and it is very expensive but if it has a chance of working that's not an issue, I'd make it work to get my quality of life back. The only people I can find who have done it have gone into a complete remission for the period they had access to it.

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.