KDM: scig for inflammation

ivorin

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Kdm gave me scig for inflammation (late stage cfs, inflammatory syndrome with high prostaglandines low cytokines). Anyone heard anything about the use of it for that?
 

TenuousGrip

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Yep.

Stanford (Jose Montoya's clinic) told me earlier this year -- and then repeated it at my recent in-person appointment -- that the vast majority of their patients who have a trial of SC/IVIG see significant improvement.

They say it should be a high (anti-inflammatory) dose. Sounds like KDM knows this.

I hope you get relief, too !
 

ivorin

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Yep.

Stanford (Jose Montoya's clinic) told me earlier this year -- and then repeated it at my recent in-person appointment -- that the vast majority of their patients who have a trial of SC/IVIG see significant improvement.

They say it should be a high (anti-inflammatory) dose. Sounds like KDM knows this.

I hope you get relief, too !
That's great news, I am just starting at 165mg/ml, 6ml per week, is that similar to what Montoya is giving?

I'll probably update as I go to let people know, I'm pretty sure it's still fresh stuff as I haven't seen any threads on it as such.
 

TenuousGrip

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is that similar to what Montoya is giving?
I don't know. Montoya's clinic doesn't actually prescribe it. Rather, they advise some of their patients to work with primary care, immunology, neurology, or other specialists to see if they will prescribe it.

I think there's a fairly set protocol for an 'anti-inflammatory' dose.

I'm pretty sure it's still fresh stuff
IVIG has been trialed with ME/CFS for years. I just think the results have been very mixed (like almost every known treatment) so it doesn't get much visibility.

It's also very expensive and in relatively short supply.
 

ivorin

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I don't know. Montoya's clinic doesn't actually prescribe it. Rather, they advise some of their patients to work with primary care, immunology, neurology, or other specialists to see if they will prescribe it.

I think there's a fairly set protocol for an 'anti-inflammatory' dose.



IVIG has been trialed with ME/CFS for years. I just think the results have been very mixed (like almost every known treatment) so it doesn't get much visibility.

It's also very expensive and in relatively short supply.
I do know it for IVIG, but there isn't much information on SCIG which I'll be taking. Well, I guess I'm KDM's guinea pig :/
 

TenuousGrip

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I do know it for IVIG, but there isn't much information on SCIG
I think the delivery method (subcutaneous vs. intravenous) is the only substantive difference. SCIG is typically given about weekly while IVIG is typically given every 3-4 weeks.

I'll be very interested to hear how it works for you.
 

ivorin

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There's a Norwegian ME docu "perversely dark" (you can search PR for it) that features two very severe patients who get SCIG if I remember correctly. One gets in complete remission (if related or not), the other one has no change at all.
That's great info, thank you! It seems the girl that achieved remission was prescribed the same dose I am. Guess KDM has watched the dox :)
 

justy

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I took it for 18 months and it helped me to be able to be housebound rather than bedbound. KDM only gives very low doses. It also helped me, low dose to stop catching things all the time and gave my body a rest from constant colds, infections etc.

Sadly I had to stop due to MCAS reactions to it and now have a fridge full.
 

ivorin

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I took it for 18 months and it helped me to be able to be housebound rather than bedbound. KDM only gives very low doses. It also helped me, low dose to stop catching things all the time and gave my body a rest from constant colds, infections etc.

Sadly I had to stop due to MCAS reactions to it and now have a fridge full.
No mcas reactions at first though? It seems to be pretty safe in his 6ml dose.
 

justy

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No mcas reactions at first though? It seems to be pretty safe in his 6ml dose.
No, my MCAS wasn't diagnosed pr noticeable when I started the scig.

At first I had severe dizziness from a 6ml dose, then I had a cytokine storm and was very ill from the next dose. then we dropped it down to 3 ml twice a week and I began reacting to it so we dropped it down to 1.5ml twice a week. at that dose no reaction, but anything over 2ml made me react with an allergic reaction. I am extremely med sensitive and even had a seizure after just a few drops of an IV antibiotic so im not a typical case at all.
 

justy

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Now I have been off the SCIG for 9 months and I am bedbound again. Evne tiny doses were stopping me from being bedbound. I now also have had a bad cold and now have candid in my throat - I used to get this all the time before scig, and lots of viruses etc.
 

ivorin

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Now I have been off the SCIG for 9 months and I am bedbound again. Evne tiny doses were stopping me from being bedbound. I now also have had a bad cold and now have candid in my throat - I used to get this all the time before scig, and lots of viruses etc.
One idea for you is Apuxan, you might want to check it out (just google it), it's backed by solid scientific evodence to push th2 into th1 mode - might help with the viruses and colds!
 

Thinktank

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I took SCIG for 3 months, i didn't notice much from it.
I want to try IVIG ala autoimmune protocol, i just need to find a doctor who's willing to prescribe it.