ivorin
Senior Member
- Messages
- 152
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?
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
That's great news, I am just starting at 165mg/ml, 6ml per week, is that similar to what Montoya is giving?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 !
is that similar to what Montoya is giving?
I'm pretty sure it's still fresh stuff
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 :/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
I'll keep you posted, sounds like I have to take a few for the teamI 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.
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 doxThere'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.
No mcas reactions at first though? It seems to be pretty safe in his 6ml dose.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, my MCAS wasn't diagnosed pr noticeable when I started the scig.No mcas reactions at first though? It seems to be pretty safe in his 6ml dose.
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!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.