Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

[Grigor]

Hoping for a transcript. But you guys seem very happy with his answers. Can't wait. Thanks OMF

 

[lilpink]

Interesting coincidence that I was taking anti acne medication around the time the illness started (with no apparent trigger). Guess what:

Although my ME started in 1970 and there were probably varying triggers in terms of different relapses at different times before this event, at the end of 1982, beginning of 1983 I started taking oxytetracycline for acne also. I was at that point in time experiencing my best non-pregnancy 'remission' (at about 75 to 80% of normal) . Within a couple of months of taking the drug I started to crash and within 9 months I was fully 'crashed'. I'm extremely interested to hear of this connection to mTOR.

 

[Ben H]

Hoping for a transcript. But you guys seem very happy with his answers. Can't wait. Thanks OMF

Hopefully we can get a transcript. Will ask about that.

It's OMF and the CFSRC @ Stanford Genome Centre who are working the magic (aswell as many behind the scenes)


B

 

[eljefe19]

@lilpink Anecdotally activating Akt/mTOR has been helpful for me, it smoothes out the push crash cycle. Doesn't do a whole lot for baseline energy, so far, however.

 

[Helen]

Should we then avoid using any of the substances that are supposed to be an mTOR inhibitor while waiting for more facts? Just a thought...

 

[eljefe19]

@Helen Personally, I've eliminated all supplements that inhibit mTOR. However, there are a few examples I've come across that both inhibit mTOR and also have shown to ameliorate ME/CFS symptoms; NAC, Oxymatrine and Azithromycin, for example.

 

[boolybooly]

Thanks for sharing Dr Davis. It was a very interesting conversation.

I hope we can find a way to fund this work and whatever follows from it.

 

[Hajnalka]

We do need to appeal to philanthropists so any suggestions or thoughts on that would be great. Its something OMF are working on.

@NL93, didn't you have this money bin in your backyard?

 

[Mary]

Does this mean we should use Leucine?

I started taking branched chain amino acids a little over 2 years ago - BCAAs consist of leucine, isoleucine and valine, and they have cut my PEM recovery time in half. So I won't be without them. I did cut my initial dose after I don't know how long, but my recovery time started lengthening again, and so I went back to my original dose. Unfortunately, they have no extended my activity window - what I can do without crashing - but it is so nice having a shorter recovery period.

 

[eljefe19]

@keenly Good list, that article also lists a few mTOR activators. I'd also look into agents that activate the Akt pathway as this usually results in mTOR activation. Akt activators; Rhodiola, TUDCA, Florinef, Cimetidine (through reduced Tregs), Cordyceps mushrooms, Taurine, Uridine, etc.

 

[bertiedog]

Should we then avoid using any of the substances that are supposed to be an mTOR inhibitor while waiting for more facts? Just a thought...

For me that definitely would not work because steroids are on the list posted earlier and I am steroid dependent and take 6 mg Prednisolone daily. It gives me a big increase in energy every day together with my thyroid meds and definitely helps me to be quite active and feel reasonable well most days so that doesn't make sense to me. (It doesn't stop my energy running out though with prolonged activity).

Pam

 

[eljefe19]

@Mary two years on Leucine, huh? Have you noticed any long term improvements? BCAA's upregulate mTOR but I imagine this takes some time to occur.

 

[eljefe19]

For me that definitely would not work because steroids are on the list posted earlier and I am steroid dependent and take 6 mg Prednisolone daily. It gives me a big increase in energy every day together with my thyroid meds and definitely helps me to be quite active and feel reasonable well most days so that doesn't make sense to me. (It doesn't stop my energy running out though with prolonged activity).

Pam

I've seen Predisolone getting good reviews on here lately. I was under the impression that you wouldn't want to take this drug everyday however. Have you noticed any side effects?

 

[TigerLilea]

I cannot help but like this man.

His responses are so informed and valuable, but also a bit troubling for those of us with both diagnoses of ME/CFS and persistent bacterial infections - the latter of which seem to warrant abx. But if abx may worsen the ME/CFS, then what do we do?
Rhetorical question, but an honest dilemma.

It is a dilemma. My sinuses are really bad right now and have been for the past two months but I don't want to go on yet another course of antibiotics. I've said all along that my ME/CFS didn't start until I was put on Penicillin 26 years ago.

 

[keenly]

@keenly Good list, that article also lists a few mTOR activators. I'd also look into agents that activate the Akt pathway as this usually results in mTOR activation. Akt activators; Rhodiola, TUDCA, Florinef, Cimetidine (through reduced Tregs), Cordyceps mushrooms, Taurine, Uridine, etc.

Dr Yasko has actually found a high build up of uridine is some patients due to insufficient methylation. Rhodiola can be particularly useful for those with high creatinine levels in urine, for those with high lactic acid on a MAP or OAT test or for athletes who have higher lactic acid and creatinine that may affect their muscles. Rhodiola has been reported to lower creatinine levels as well as lowering lactic acid and to reduce the effect of excess stress on the body. Dr.Amy suggests considering rhodiola when creatinine levels are consistently very high on urine tests as she feels this puts undue stress on the kidneys.

 

[eljefe19]

@keenly Interesting! I take all the agents I mentioned, and I've found it improves PEM probably 25%. Still my baseline activity level is like a 3 though.

 

[Diwi9]

Same here!!!!!!!!!!!!

Me too. Multiple and 2+ years of antibiotics for acne as a teen. Senior year, I had repeat problems with sinus infections and it took three rounds of antibiotics to wipe it out. I was an athlete (team captain) and pushed through illness. My coach reprimanded me in front of the team for missing practice when I was sick...

I wonder if the start of my ME/CFS was earlier than I've identified, but was just super mild.

 

[eljefe19]

Me too. Multiple and 2+ years of antibiotics for acne as a teen. Senior year, I had repeat problems with sinus infections and it took three rounds of antibiotics to wipe it out. I was an athlete (team captain) and pushed through illness. My coach reprimanded me in front of the team for missing practice when I was sick...

I wonder if the start of my ME/CFS was earlier than I've identified, but was just super mild.

If only we had known. I still had a doctor as recently as last year tell me that I just had to "push through."

 

[barbc56]

I like Ron's evil genius in his lair look in this video, all he needs is a white cat to pet

You say that like it's a "bad" thing!

What a fantastic family!

 

[Diwi9]

If only we had known. I still had a doctor as recently as last year tell me that I just had to "push through."

If my process started earlier (in high school), then both of my "relapses" (i.e., decline in overall state) were contemporaneous with the commencement of new careers.