Tocilizumab is amazing, anyone tried?

[Jesse2233]

I have reached out to Yasuyoshi Watanabe, a lead ME/CFS researcher in Japan, to see if he know of any Actemra trials or of any other patients who have benefited from this treatment.

 

[Jesse2233]

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]

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).

 

[Jesse2233]

Amoxicillin: practically instant cure (short lived though)

Interesting, anything else to note on your amoxicillin experience?

 

[cigana]

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.

 

[Jesse2233]

@cigana so fascinating

would be interesting if you did a cytokine panel before and after taking Amoxocillin and

 

[cigana]

@cigana so fascinating

would be interesting if you did a cytokine panel before and after taking Amoxocillin and

My IL-8 was raised according to RED Labs. Tbh I don't trust any lab enough to bother with a cytokine panel anymore.

 

[Jesse2233]

My IL-8 was raised according to RED Labs. Tbh I don't trust any lab enough to bother with a cytokine panel anymore.

Interesting on IL8, ARUP's cytokine pane isn't so bad

 

[gregh286]

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.]

@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]

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]

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

 

[Jesse2233]

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.

Lol good question

I know the "mab" suffix means that it's derived from mouse protein

 

[cigana]

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]

@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]

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]

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?

 

[frederic83]

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

You are taking Alinia for which symptom ?

 

[aquariusgirl]

It helped with brain Inflammation.

 

[gregh286]

Interesting, thanks.
Which probiotic? I can believe the pred helps but does sugar really affect the immune system that much?

Garden of.life ultra.
Yes enough sugar will suppress it.

Good read.
http://www.sciencedirect.com/science/article/pii/S1567576913004050