@Countrygirl I started wentzels stack a week ago, not sure about the other supps (I’ve tried them before with no change but I am taking them all this tIme, along with the niacin) the niacin is having a positive impact, I’m managing slightly More steps a day, my circulation seems better, my muscle fatigue is improved it seems I can take the niacin when I feel I’m crashing and make the crash go away so it’s substantially reducing PEM.
It seems to lower blood pressure if I take too much and make me feel POTSy but I didn’t crash from that. I don’t yet feel I can go massively over my regular step count as I think I need to figure out this new version of me - I still don’t feel quite right. But I’m tracking my activity with an HR monitor and it seems I can function in a higher activity zone - ie heart rate increase doesn’t trigger crash quite as fast and If I do start to crash I can just take another niacin. I’m taking 25 or 50mg depending on how I feel. So far I would say I have gone from 40% functional to 50%.
@xebex
@bertiedog
Apologies for my late response! I have missed this thread until today.
I was very interested in your experiences with the 'stack'.
However, I think you are taking the wrong form that won't get you very far, if this is so. You need NICOTINIC ACID NOT NICOTINAMIDE. This is very important.
You must take the flushing form of niacin. You also need vits C and D, quercetin, selenium, and zinc.
A few days ago, I attended a Zoom meeting with Dr Wentzel with a small group and was rivetted by the information.
In one group on Facebook to which I belong, 70 Long Covid patients are on the stack and 68 improved considerably. Of the two who didn't, one was taking too low a dose and the other had other serious comorbidities and they have been referred to Dr Wentel to sort out.
Dr Wentzel has 700 now on his stack and he says it is treating them successfully.
I am yet to write up my notes of the two-hour chat which I shall be sending to Dr Weir. I doubt I can post them publically as he has another paper coming out shortly so some of the information cannot be in the public domain yet.
He has been tweaking the protocol and I was fascinated to listen to him describe how it works as it was like reading one of Prof Ron Davies's explanations of ME where he discusses the kynurenine pathway They seem to have both discovered the same pathway abnormalities. When I spoke with Dr Wentzel, he said he had never heard of Prof Davies. I think it would be worthwhile if they communicated with each other.
It is very important to take the flushing form and to build up slowly and not become alarmed if you flush. That is a sign that you are deficient in niacin. Patients find they experience an improvement within 24 hours and they continue in this 'honeymoon' stage for about 3 weeks, and then they plateau, but it is important to continue although the improvement is then 'slothlike'.
He thinks that Covid (and other viruses?) cause permanent genetic damage which means that niacin deficiency becomes permanent and so supplication is required for the rest of your life. In other words, the disease is something akin to chronic pellagra which includes such symptoms as sensitivity to light, sound, etc which are all familiar to us.
Dr Wentzel has also tweaked the protocol and now adds vitamin B12, B6 and resveratrol.
He has now created a product in capsule form which contains all the ingredients you need instead of having to buy several bottles of vitamins and minerals.
One word of warning: you do have to take care not to trigger serotonin syndrome so it is important to get clearance from your doctor.
I am hoping that Dr Weir will do a UK trial of the 'stack' with Dr Wentzel as the next stage is to discover whether it is successful with ME. Dr W could use his clinic patients from East Devon, Northern Ireland and perhaps from London as trial participants. I am encouraging him to do this at the moment.
