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

[halcyon]

Is it possible that there are two different mechanisms causing both the metabolic and immune-esque symptoms, or is it possible that issues with the metabolism are somehow indirectly causing immune-style symptoms to manifest?

I think the immune effects are causing the metabolic effects personally.

 

[lintonthepenguin]

I think the immune effects are causing the metabolic effects personally.

See, that makes a lot of intuitive sense to me, and would also seem to tally with the preliminary success Fluge and Mella are finding in Rituximab (albeit the efficacy of Rituximab could be due to the drug's other more obscure effects, as Dr Davis has mentioned before). That said, I'm not sure what Dr Davis's current working stance on immune involvement in ME/CFS is. Perhaps I should submit a question to that effect for the next one of his videos, unless he's mentioned it before and I'm simply forgetting.

 

[Neunistiva]

@lintonthepenguin This post by @Rose49 might interest you http://forums.phoenixrising.me/inde...1-17-research-update.49749/page-6#post-821109

 

[BurnA]

If the fundamental issue with ME/CFS is essentially an issue with something in the serum preventing cells from being able to produce energy normally, how does that fit in with all the various immune system-esque symptoms that ME/CFS patients experience (sore throats, lymph node stuff, etc)? Is it possible that there are two different mechanisms causing both the metabolic and immune-esque symptoms, or is it possible that issues with the metabolism are somehow indirectly causing immune-style symptoms to manifest?

Good question, I'd like to know too if POTS fits into this theory somehow.

 

[lansbergen]

I think the immune effects are causing the metabolic effects personally.

So do I.

 

[shannah]

I can't help but think how excited Rich Van K would have been by all of this research

 

[ljimbo423]

I think the immune effects are causing the metabolic effects personally.

I also agree, that it's the immune system causing mitochondrial dysfunction and many other symptoms as well.

 

[ukxmrv]

I think that was true for me. Also, as a very long term patient, I didn't know the damaging effects of getting into PEM and regularly did so--there was no information, I didn't even have a name for my illness.

Then 11 years ago (also before I knew anything) I did some intense aerobic exercise for a week (I had a house-guest who was pushing me to accompany her) and I took a huge nose dive that I have never recovered from. Then there is the daily "pushing" of feeding and caring for oneself that is heightened if you live alone. If you don't find a way to feed yourself, no one else will.

We used to have visions of the old TB sanitoriums being reopened to house PWME. That was back in the 80's when there were more obvious outbreaks.

Something like this is desperately needed so that patients can go somewhere safe when they are first ill to recuperate. Also for respite when longer term ill.

This idea of recuperation seems to be lost in modern medicine.

Dr Ramsay said that his patients who did best were the ones who could rest up at the start of their illness. That's simply not encouraged now and anyway, who would look after us. I can't get adequately state funded care in my home anyway.

 

[TigerLilea]

Dr Ramsay said that his patients who did best were the ones who could rest up at the start of their illness. That's simply not encouraged now and anyway, who would look after us. I can't get adequately state funded care in my home anyway.

I rested up in the first four months as per my doctors instructions and I actually got worse because of it. I do better when I am getting at least some physical activity during the day even if it is just doing things like making meals and washing dishes.

 

[TreePerson]

We used to have visions of the old TB sanitoriums being reopened to house PWME. That was back in the 80's when there were more obvious outbreaks.

Something like this is desperately needed so that patients can go somewhere safe when they are first ill to recuperate. Also for respite when longer term ill.

This idea of recuperation seems to be lost in modern medicine.

Dr Ramsay said that his patients who did best were the ones who could rest up at the start of their illness. That's simply not encouraged now and anyway, who would look after us. I can't get adequately state funded care in my home anyway.

I agree this concept has been lost. People used to go into convalescent homes after surgery. I seem to remember places in the countryside where people could go and continue to be cared for in peaceful surroundings while they recovered their strength. I am pretty sure that when my mum had major surgery in the early 1970s (UK), she spent three weeks in hospital and another three in a convalescent home. It was also well known that sick people needed darkened rooms and peace and quiet.
It seems extraordinary that people can have lost this very basic understanding. I wonder to what extent the pace of modern life and the loss of a deeper respect for the body and the natural world has contributed to the increase in cases of ME and possibly autoimmune disease. It's a kind of arrogance.

 

[Alvin2]

Then 11 years ago (also before I knew anything) I did some intense aerobic exercise for a week (I had a house-guest who was pushing me to accompany her) and I took a huge nose dive that I have never recovered from.

I've had a similar experience, never recovered and now living with it forever.

I rested up in the first four months as per my doctors instructions and I actually got worse because of it. I do better when I am getting at least some physical activity during the day even if it is just doing things like making meals and washing dishes.

Its probably the best advice to do what your comfortable with, we all know that this condition has unique quirks for each sufferer, and the human body is fundamentally designed to be active and nobody wants to be bedridden so we should all do what works best for us given we have this debilitating condition

 

[dannybex]

The one the doc recommended is Dyamtize ISO 100. It's whey protein isolate with added flavour. Other brands probably substitute just fine but I haven't looked into that. I started off at one scoop a day. More recently I've been taking 3 scoops a day.

It's not cheap, (comes out at about $1.50 to $2 a scoop) but unlike most supps I take it is essentially food (albeit highly processed) so I can justify it by saying it helps makes other food costs lower!

Is this regular whey protein powder, or does it have extra leucine?

The only one I could find mentioned the following ingredients: Hydrolyzed Whey Protein Isolate, Whey Protein Isolate, Cocoa (processed with Alkali), Natural and Artificial Flavors, Salt, Soy Lecithin, Potassium Chloride, Sucralose.

Personally I'd steer clear of artificial flavors, but especially Sucralose. It and other artificial sweetners can screw up the microbiome, as noted in this study and also this one.

 

[bel canto]

I can't help but think how excited Rich Van K would have been by all of this research

What a nice thought! I still miss him.

 

[gregh286]

I think the immune effects are causing the metabolic effects personally.

I agree.
I had my leucine levels tested before taking any leucine.
Around x4 higher than normal.
So....additional supplementing might just end up in the leucine "pool".
I think the bodies mechanism to deactivate mtor is more efficient than flooding in leucine.
Insulin pretty much always works for me in a crash however.
Blood sugar needs to stay high for 5 or 6 hours to see benefit.
It's an awful lot of pizza and beer. Try selling that story to the wife...."yea I'm eating pizza and beer all day today to increase insulin and activate my mTORC path away. "
Waistline doesn't approve either.
What happens if you inject insulin.....do the same job minus the pizza and beer?

 

[paolo]

@eljefe19 - This discussion is winding me back to Dr. Jay Goldstein that discussed curing ME/CFS with a single dose of a drug. One of his favorite drugs was ketamine. It's interesting that Dr. Davis also talked about a single-dose cure.

Perhaps prof Ron Davis was thinking about the experiment by Naviaux with suramin on autistic children. Naviaux investigated the usefullness of a single dose of suramin in autism, as suramin is an anti-purinergic drug which might turn off the cell danger response which is belived by Naviaux to be one possible cause of autism. This is the trial by Naviaux, which should has already ended. Results have not been published yet, as far as I know.

 

[Murph]

Is this regular whey protein powder, or does it have extra leucine?

The only one I could find mentioned the following ingredients: Hydrolyzed Whey Protein Isolate, Whey Protein Isolate, Cocoa (processed with Alkali), Natural and Artificial Flavors, Salt, Soy Lecithin, Potassium Chloride, Sucralose.

Personally I'd steer clear of artificial flavors, but especially Sucralose. It and other artificial sweetners can screw up the microbiome, as noted in this study and also this one.

I dont know if Leucine is added. It's the most abundant component but perhaps that is naturally how whey comes. The ingredient list matches what I've got. If you googled the brand I mentioned I'm sure you're looking at the same thing!

I note your point on sucralose. I wouldn't have chosen this brand myself but my doc recommended it and it seems to be working, so I am reluctant to change!! I'll do some more research and self-experimenting over time.

 

[PeeWee]

a few days back @Sandman00747 posted about his sudden brief remission last year & some others on the forum have experienced similar brief 'switch-offs' of symptoms. I just posted this question on the other thread, but thought it might be better here:

I know these sudden brief remissions are completely unpredictable & can't be 'triggered' but if someone has one, would there be a way of getting a remission blood sample to Ron Davis - & then when the remission was over getting another one to him for comparison? Would that be possible? Would it be useful? If so, then if the Phoenix Rising community (esp those who have previously had one of these remissions) knew what to do if a new one occurred, in terms of getting a blood sample done & delivered, maybe it could give Ron some pointers on anything that's different in the remission sample?

 

[dannybex]

I dont know if Leucine is added. It's the most abundant component but perhaps that is naturally how whey comes. The ingredient list matches what I've got. If you googled the brand I mentioned I'm sure you're looking at the same thing!

I note your point on sucralose. I wouldn't have chosen this brand myself but my doc recommended it and it seems to be working, so I am reluctant to change!! I'll do some more research and self-experimenting over time.

Interesting that Leucine is the 'most abundant' amino. I've been trying Biochem Natural Whey, and Leucine is the 2nd highest amino, after glutamic. I believe glutamic/glutamine is typically the highest in almost any animal-based protein source, but not certain on that. Thanks @Murph.

 

[BurnA]

I know these sudden brief remissions are completely unpredictable & can't be 'triggered'

I was thinking something similar but in the specific case of pregnancy triggered remission. I have heard of it mentioned but obviously have no figures, but if it is a real phenomenon, couldn't they test people (pre and) post pregnancy.

 

[J.G]

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

https://www.researchgate.net/public..._of_mTORC1_in_acne_pathogenesis_and_treatment

PS: the prevalence of this illness also peaks in teenagers (and later in women in their 30's), at a time when they would presumably be most likely to also be taking some anti acne product. But I'm done with confirmation bias and coincidences now. Just making a mental note in case mTOR really turns out to be important.

Holy cow! Thanks a million for linking that article. I battled acne vulgaris in my teenage years and was prescribed, successively, benzoylperoxide, a few types of antibiotics, and finally isotretinoin (Accutane). Talk about grinding MTOR into the ground! Some two years after coming off Accutane, I developed MECFS...