IV IG: Intravenous immunoglobulin infusions

[fst]

1mg / kg. My pain went overnight, muscles stopped twitching in a week, and mild POTS gone overnight.

I know this for POTS because usually when I wake in the morning my heart rate will skyrocket.

After IVIG it stopped.

Thanks! Been wondering whether my 0.5mg/kg were maybe too little, as some studies go up to 2mg. But then again, who knows how it interacted with the IA.

I also noticed a drop in heart rate for about a month. It's actually documented via smart watch. But what made me suspicious is that it happened again a few months later without intervention.

I'm much anticipating the RECOVER trial results, although my enthusiasm about antiblodies has been dampened a lot by the failed IA trials.

Anyway, great to hear that you could go back to work!

 

[ryanc97]

Exactly. It has nothing to do with the point being made about unethical behaviour. If this doctor has seen loads of children with ME/CFS why has he not made sure he has reliable evidence for his treatment being effective, and therefore, ethical?

You have an interest in it not being antibody related because you have your own T cell theory. This is my view and I think it matches quite well with what I’ve seen.

Scientists are often attached to their own theories.

That’s all I’ll say

 

[ryanc97]

My take is this. IVIG floods FCRN. This, if you have 10x the number of AABs say as a mild patient, then 1g will not be enough to compete with the rest of the AABs.

Thus, it may help mild patients but not move the needle for severe because a severe patients have simply much more AABs flooding the system

 

[ryanc97]

Can you say this for certain though considering iirc you did dara around the same time you started IVIG? And the fact it could just be natural fluctuation?

No, I did IVIG before Dara actually. Dara didn’t do anything for me, no changes.

Dara was done in February this year. FM study shows responses in 2 months. A dramatic improvement. It wouldn’t make sense for my improvement 7 months later in September to be from Dara.

 

[ryanc97]

Lastly since my brainfog isnt as bad. Here is the evidence


1. FM empirically noticing cancer ME patients get cured after cyclo
2. Cyclo trial
3. Dara trial
4. Iwasaki study
5. Vygart
6. IVIG anecdote

 

[fst]

My take is this. IVIG floods FCRN. This, if you have 10x the number of AABs say as a mild patient, then 1g will not be enough to compete with the rest of the AABs.

Thus, it may help mild patients but not move the needle for severe because a severe patients have simply much more AABs flooding the system

No, I did IVIG before Dara actually. Dara didn’t do anything for me, no changes.

That sounds contradictory to me. On the one hand, the number of "bad" AAB determine your severity but at the same time shifting the good/bad ratio via any amount of IVIG doesn't?

According to that theory, Dara or an IA should remove much of the bad antibodies, and thus make IVIG even more efficient.

 

[ryanc97]

That sounds contradictory to me. On the one hand, the number of "bad" AAB determine your severity but at the same time shifting the good/bad ratio via any amount of IVIG doesn't?

According to that, Dara or an IA should remove much of the bad antibodies, and thus make IVIG even more efficient.

Dara if it gets rid of antibodies should cure you and that is what I believe happened to Renate.

 

[ryanc97]

That sounds contradictory to me. On the one hand, the number of "bad" AAB determine your severity but at the same time shifting the good/bad ratio via any amount of IVIG doesn't?

According to that theory, Dara or an IA should remove much of the bad antibodies, and thus make IVIG even more efficient.

It does but imagine having 10x bad antibodies a mild person has, then IVIG will only produce a very very tiny improvement compared to a mild person.

 

[ryanc97]

Now I will explain why I said JE is biased towards his theory

1. He is skeptical of FM stuff being antibody related. This alone is not enough evidence.
2. Every time an AAB topic pops up he will come in to comment to say it is unrealistic, and then in some cases, insert some comments about his T cell Qeios paper. This alone is not enough evidence yet, though.
3. A doctor prescribes IVIG reporting success on X, and then he comes into gently raise the idea, in subtle fashion, that he could likely be a “possible scammer”, as “any doctor on X is likely to be a possible scammer”.

With these 3 statements I think it’s quite fair to form my judgment that there is some bias.

I rest my case.

 

[Jonathan Edwards]

You have an interest in it not being antibody related because you have your own T cell theory.

@ryanc97, please!

The 'T cell theory' was just a potboiler exercise in laying out some parameters for a decent theory. As the paper says, it is not the only theory of interest to the authors!! I have nothing invested in that theory. In fact I have pretty much thrown it in the bin mentally. It doesn't really work.

I am a died in the wool B cell champion when it comes to diseases where there is some evidence. (In the 1990s you could always tell B cell enthusiasts because they used macs like Webb. T cell people used PCs like Mitchell.) But let's face it, the evidence for B cells in ME/CFS is not there. I looked up that Scheibenbogen presentation that got flagged up. She doesn't even show the data on autoantibodies - which ought to be the focus of the evidence. I guess she realises that the plots are totally underwhelming.

I realise that almost everyone else treats science like an NFL super bowl contest where you have to cheer on your team. But I have never been interested in competitive sports, or science. I have no skin in this game whatever. But I have a certain amount of experience with B cells.

 

[ryanc97]

@ryanc97, please!

The 'T cell theory' was just a potboiler exercise in laying out some parameters for a decent theory. As the paper says, it is not the only theory of interest to the authors!! I have nothing invested in that theory. In fact I have pretty much thrown it in the bin mentally. It doesn't really work.

I am a died in the wool B cell champion when it comes to diseases where there is some evidence. (In the 1990s you could always tell B cell enthusiasts because they used macs like Webb. T cell people used PCs like Mitchell.) But let's face it, the evidence for B cells in ME/CFS is not there. I looked up that Scheibenbogen presentation that got flagged up. She doesn't even show the data on autoantibodies - which ought to be the focus of the evidence. I guess she realises that the plots are totally underwhelming.

I realise that almost everyone else treats science like an NFL super bowl contest where you have to cheer on your team. But I have never been interested in competitive sports, or science. I have no skin in this game whatever. But I have a certain amount of experience with B cells.

Correct, I am saying you have amount of some bias to this because of your past research.

And I have laid out my arguments above. I think it’s quite reasonable to have this view.

All I did was observe behavior and draw a conclusion.

Anyway, another piece of the puzzle will unlock once this trial results are out. Then we have another piece of evidence to support, or go against, this theory.

 

[Jonathan Edwards]

Correct, I am saying you have amount of some bias to this because of your past research.

Why does experience with autoimmunity produce bias when it comes to ME/CFS, @ryanc97 ?

Your list of evidence conveniently misses out the negative rituximab trial and a lot of other negatives - the absence of any biologically significant increase in autoantibodies in either ME/CFS or Long Covid for instance.

I was rooting for Fluge and Mella to be right because they are such nice guys.
But the data don't add up.

 

[ryanc97]

Why does experience with autoimmunity produce bias when it comes to ME/CFS, @ryanc97 ?

Your list of evidence conveniently misses out the negative rituximab trial and a lot of other negatives - the absence of any biologically significant increase in autoantibodies in either ME/CFS or Long Covid for instance.

I was rooting for Fluge and Mella to be right because they are such nice guys.
But the data don't add up.

We’ve already debated this before, and my stance is, there is some bias. That’s all.

We will see in the future what the trials show. If it’s wrong, I am happy to admit.

 

[Jonathan Edwards]

We’ve already debated this before, and my stance is, there is some bias. That’s all.

Well, at least we have established that you have a bias!!!!

 

[ryanc97]

Well, at least we have established that you have a bias!!!!

I’ve laid out my argument for why I believe it’s autoimmune, and also laid out my argument for why my stance is you have some bias. That’s all.

We all have differing opinions and we debated quite a few times already.

Like I said, we still have to wait for more pieces of the puzzle to reveal themselves

This trial, CS Isa trial, FM Dara P2, and the collab with Tyler.

 

[Jonathan Edwards]

I’ve laid out my argument for why I believe it’s autoimmune, and also laid out my argument for why my stance is you have some bias.

Indeed. It seems that you have bias against the views of anyone with knowledge of the subject!

 

[Trish]

I can't help reading this discussion in the wider context of people totally convinced from their own experience and social media chatter that brain retraining, antivirals, HBOT, neck surgery, and a host of other treatments are the answer to the ME/CFS conundrum.

Ryan, i'm of course pleased for you that your health has improved enough to go back to work. But I can't accept any of these hundreds of claims of cause and effect without clinical trials. Is the doctor whose tweets claim efficacy for IVIG doing the treatments as part of a clinical trial?

 

[neophyte32]

There are thousands of accounts from people with Long COVID and ME/CFS whose lives were transformed thanks to LDA.
As for IVIG, it didn't work well for me at all. It actually caused excruciating pain in my fingers for three months and daily diarrhea, and I was completely exhausted.

 

[Peter T]

There are thousands of accounts from people with Long COVID and ME/CFS whose lives were transformed thanks to LDA.
As for IVIG, it didn't work well for me at all. It actually caused excruciating pain in my fingers for three months and daily diarrhea, and I was completely exhausted.

Isn’t the point that we don’t know until there are appropriate trials? Anecdotes and case histories are only clues not conclusive evidence. Though I am pleased for individuals that find a regimen that they feel works for them, we are talking about situations where there is a high degree of uncertainty that should not be used to inform clinical decision making without further investigation.

Individuals have a right to seek out potential treatments as long as they are informed of the risks, but doctors promoting treatments on the basis of personal convictions without objective evidence are certainly acting unethically.

 

[neophyte32]

Isn’t the point that we don’t know until there are appropriate trials? Anecdotes and case histories are only clues not conclusive evidence. Though I am pleased for individuals that find a regimen that they feel works for them, we are talking about situations where there is a high degree of uncertainty that should not be used to inform clinical decision making without further investigation.

Individuals have a right to seek out potential treatments as long as they are informed of the risks, but doctors promoting treatments on the basis of personal convictions without objective evidence are certainly acting unethically.

I totally agree with you.
The real scandal is that there still hasn't been a clinical trial for low-dose Abilify, don't you think? We are finally getting one, but it is clearly being very poorly conducted (starting dose too high and lasting barely a few weeks).

To get back to the subject of IVIG, the Italian doctor proposed a paper for publication, but it was rejected. He also applied for a grant for an IVIG trial—that was rejected too.