• 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 (FM), 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.

Tocilizumab is amazing, anyone tried?

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
I heard back from Dr Watanabe! He had not heard about tocilizumab and Japanese ME patients but is enthusiastic about the possibility and is inquiring with his clinical colleagues.

I provided him additional information on the Japanese patient's recovery progression, potential connection to the NCNP, and the paper showing tocilizumab's effects on PDH and TCA metabolites. It ties in well his with his 2016 paper on TCA dysfunction
 

cigana

Senior Member
Messages
1,095
Location
UK
Anti-IL6 agents from @Hip
Four macrolides (roxithromycin, erythromycin, clarithromycin and azithromycin) inhibited IL-1β, TNF-α, IL-6 LPS-stimulated J774 macrophages. 1 (full text). NOTE: Roxithromycin is the only macrolide antibiotic that crosses the blood brain barrier.
Macrolide antibiotics (like azithromycin and erythromycin) inhibit IL-6 1
Amoxicillin significant decreased IL-6 plasma levels by the 7th day of therapy. 1
Vitamin C and vitamin E inhibit muscle-derived IL-6. 1
Blueberries reduce TNF-α and IL-6 in mouse macrophages 1
Patchouli alcohol (from patchouli essential oil) inhibits IL-1β, TNF-α, IL-6 in mouse macrophages (RAW 264.7 cells) 1
Genistein inhibited LPS-induced IL-1beta, IL-6, and TNF-alpha expression in macrophages. 1
Vinpocetine inhibited the production of inflammatory factors such as IL-1β, IL-6 and TNF-α in BV-2 microglia. 1
Sulforaphane attenuates the LPS-induced increase of IL-1beta, IL-6, and TNF-alpha expression in microglia 1 Sulforaphane reduces TNF-α-induced IL-6 synoviocytes 1
Vitamin D inhibits LPS-induced IL-6 and TNF-α production in macrophages. 1
Cyclosporin A decreases human macrophage interleukin-6 synthesis. 1
Luteolin reduces IL-6 production in microglia. Luteolin: 90% drop in IL-6 production.1Pretreatment of primary microglia with 10 and 25 μM luteolin reduced LPS-induced IL-6 production by 40% and 90%, respectively. When luteolin was increased to 50 μM, IL-6 secretion by LPS-stimulated microglia was completely blocked. If we take the bioavailability of luteolin to be 5%, then the dosage to achieve a 25 μM concentration is 25 x 286.24 / (55 x 250) = 520 mg of luteolin. NOTE: the lutein bioavailability when given as Chrysanthemum morifolium extract is 55.4%, but for pure lutein is may be much lower. 1
Alpha acids and iso-alpha acids in hops(found in beer) block the TNF-alpha induced production of IL-6. 1
Polyphenols in non-alcoholic beer reduce IL-6 1
Calendula officinalis (marigold) inhibits IL-1beta, IL-6, TNF-alpha and IFN-gamma. 1
Magnolia officinalis (Magnolia) Obovatol (from Magnolia) attenuates microglia-mediated neuroinflammation. 1
Niacinamide 1
Pyrroloquinoline quinone (PQQ) reduces IL-6 1
From that list I've tried in high doses:

Vitamin C, vitamin E, Sulforaphane, Vitamin D, Polyphenols, Niacinamide, PQQ: no effect

Amoxicillin: practically instant cure (short lived though).
 

cigana

Senior Member
Messages
1,095
Location
UK
Interesting, anything else to note on your amoxicillin experience?
I've mentioned it a few times before on the forum in more detail. I need to take about 3g in one dose in say the morning (typical prescribed doses are 250-500mg). About 6 hours later, I have no fatigue, am able to e.g. walk around for hours with no payback. By the next day I'm back to my usual fatigued self.
Tried this a few times, has worked every time. But not safe to do this every day forever, and no doubt the effect would wear off if done long term.
It's related to Amoxicillin's immune-modulating properties, since the effect is far too quick for it to cause significant improvement via antibiotic effects.
 
Last edited:

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I've mentioned it a few times before on the forum in more detail. I need to take about 3g in one dose in say the morning (typical prescribed doses are 250-500mg). About 6 hours later, I have no fatigue, am able to e.g. walk around for hours with no payback. By the next day I'm back to my usual fatigued self.
Tried this a few times, has worked every time. But not safe to do this every day forever, and no doubt the effect would wear off if done long term.
It's related to Amoxicillin's immune-modulating properties, since the effect is far too quick for it to cause significant improvement via antibiotic effects.

Hi cigana.
Interesting. Seems 6 hours is a standard time for myself to witness effect also.
I didnt try amox 3g but if.i mega dose on probiotic.....sugar or take 20/30mg prednisone i see fatigue dissapearing in around 6 hours.
Likewise, effects shortlived.
You would have to think it immune system action.
 

Martin aka paused||M.E.

Senior Member
Messages
2,291
@Jesse2233 @cigana
I have just read this thread and find it very interesting. I have been to a specialist who worked with Carmen Scheibenbogen. But he didn't test for high interleukins. But a psychiatrist I had to visit because my doc told me so ("it might be a conversion disorder") said, I had to test for every antibody and interleukins - btw, the psychiatrist said that he is quite sure my condition has nothing to do with mental illness :) there are good ones out there!

So my question ist: Where did this go with the IL-8 levels? I found the blog https://forums.phoenixrising.me/index.php?entries/high-il-8-as-a-marker-for-cfs.1690/ being 3 years old...

Thank you!
 

NelliePledge

Senior Member
Messages
807
Flippant comment alert. How do they come up with the names for these drugs it liiks like something you'd get if you sat a chimp in front of a typewriter.
 

knackers323

Senior Member
Messages
1,625
Hi cigana.
Interesting. Seems 6 hours is a standard time for myself to witness effect also.
I didnt try amox 3g but if.i mega dose on probiotic.....sugar or take 20/30mg prednisone i see fatigue dissapearing in around 6 hours.
Likewise, effects shortlived.
You would have to think it immune system action.

Its no secret there is something wrong with our immune systems. Just what it is and what can be done about it?

I get huge relief within hours from many things that modulate the immune system also
 

cigana

Senior Member
Messages
1,095
Location
UK
Hi cigana.
Interesting. Seems 6 hours is a standard time for myself to witness effect also.
I didnt try amox 3g but if.i mega dose on probiotic.....sugar or take 20/30mg prednisone i see fatigue dissapearing in around 6 hours.
Likewise, effects shortlived.
You would have to think it immune system action.
Interesting, thanks.
Which probiotic? I can believe the pred helps but does sugar really affect the immune system that much?
 

cigana

Senior Member
Messages
1,095
Location
UK
@Jesse2233 @cigana
I have just read this thread and find it very interesting. I have been to a specialist who worked with Carmen Scheibenbogen. But he didn't test for high interleukins. But a psychiatrist I had to visit because my doc told me so ("it might be a conversion disorder") said, I had to test for every antibody and interleukins - btw, the psychiatrist said that he is quite sure my condition has nothing to do with mental illness :) there are good ones out there!

So my question ist: Where did this go with the IL-8 levels? I found the blog https://forums.phoenixrising.me/index.php?entries/high-il-8-as-a-marker-for-cfs.1690/ being 3 years old...

Thank you!
I lost confidence in the IL-8 idea. As Jonathan Edwards pointed out, if RED labs really were able to show such a strong signature then where is the publication backing it up?
Not much of a pattern in general in cytokines, I don't think..
 

aquariusgirl

Senior Member
Messages
1,732
No idea what it means but my IL8 was 400 when upper end of range was 14 ....from WPI....whatever their lab was called. VIP I think?
My ID doc didnt' order the test, but commented that no one really knew how to interpret cytokine fluctuations. He did note that IL8 seemed to be associated with CFS.

My inflammation is way down since then....thanks to Alinia, zinc, mitosynergy copper and treating for oxolates I *think.*
 

cigana

Senior Member
Messages
1,095
Location
UK
No idea what it means but my IL8 was 400 when upper end of range was 14 ....from WPI....whatever their lab was called. VIP I think?
My ID doc didnt' order the test, but commented that no one really knew how to interpret cytokine fluctuations. He did note that IL8 seemed to be associated with CFS.
There is now a RED Labs in the US, maybe WPI use them?