Martin aka Paused and H.E.L.P treatment

[Countrygirl]

I would be interested in what people make of Dr Ade Wentzel's new interview with Gez Medinger where he talks about the kynurenine pathway and its role in Long Covid (and ME). He uses flushing niacin and co-factors to restore Long Covid patients to about 97% of their former health, although it appears that the 'stack' may have to be taken for life. It is the same pathway, of course, that we hear Prof Ron Davies describe in relation to ME.

 

[Consul]

He uses flushing niacin and co-factors to restore Long Covid patients to about 97% of their former health,

Im hearing he gets them to 60% at 33:10 in the video, where did you get 97%?

Very interresting stuff though.

Edit: i just realized the 60% number was wrt to nicotinamide vs nicotinic acid, he thinks the nicotinic acid is much better.

 

[anne_likes_red]

I would be interested in what people make of Dr Ade Wentzel's new interview with Gez Medinger where he talks about the kynurenine pathway and its role in Long Covid (and ME). He uses flushing niacin and co-factors to restore Long Covid patients to about 97% of their former health, although it appears that the 'stack' may have to be taken for life. It is the same pathway, of course, that we hear Prof Ron Davies describe in relation to ME.

I just looked in here to see if anyone was following this.
I've been experimenting with flushing niacin for a couple of weeks and I reckon my POTS has improved 50% - sometimes feels like more. Would love to hear others experience if they try it. x Anne.

PS I have also been taking the suggested co-factors quercetin (I use phytosome) and resveratrol for the past six weeks as part of a pre-Covid protocol. I also use apigenin as a CD38 inhibitor/nad booster and I have all the B's, zinc and selenium covered. Only saw improvement with POTS symptoms after bumping niacin up significantly though. I'm actually using 500 mg 2 x per day.

 

[keep_hope]

I will be at Dr Jaegers Clinic on February the 11th again. I wrote this letter to her regarding the improvements and possible mechanisms on Ativan, Pregabalin and Abilify which can’t be ignored in her study.

I also mention the contradictory findings on LD and propose a combined treatment with antivirals.

Sorry it’s in German but perhaps you’ll find a way to translate it.

View attachment 46385View attachment 46386

How did you know to take pregablin and tavor at these doses? Are there any studies? Did you trial lower doses first? Thanks

 

[andyguitar]

I've been experimenting with flushing niacin for a couple of weeks and I reckon my POTS has improved 50% - sometimes feels like more. Would love to hear others experience if they try it. x Anne.

Thats a pretty good result might be worth starting a thread about it.

 

[halcyon]

Only saw improvement with POTS symptoms after bumping niacin up significantly though. I'm actually using 500 mg 2 x per day.

Has any rationale been given for the use of nicotinic acid (flushing type, typically called niacin) rather than niacinamide (non-flushing type, also called nicotinamide)?

I'll urge you and anyone else considering it to be very cautious with high-dose nicotinic acid. It has been known to cause toxicity at 750mg, and even at 500mg if using sustained release forms (ref; ref2). Unless there is something specific about nicotinic acid to justify using it this way, niacinamide is much safer at high doses. Niacinamide doses up to 1000mg have been used safely (Chen et al., 2015), and even up to 3000mg in one study (Murray et al., 2001). Beyond 3000mg, niacinamide also produces toxicity (Huber & Wong, 2020).

I would be interested in what people make of Dr Ade Wentzel's new interview with Gez Medinger where he talks about the kynurenine pathway and its role in Long Covid (and ME). He uses flushing niacin and co-factors to restore Long Covid patients to about 97% of their former health, although it appears that the 'stack' may have to be taken for life. It is the same pathway, of course, that we hear Prof Ron Davies describe in relation to ME.

I've not watched it yet, but I'm curious why he is using it. In the setting of chronic infection, the kynurenine pathway would be expected to be driven at higher levels, which could shunt tryptophan away from its other important uses in the body, causing blood levels to drop (as has been shown in some CFS studies, but not all). It has been shown that high-dose niacinamide can restore blood tryptophan levels in HIV patients (ibid.), possibly by putting backpressure on kynurenine pathways.

Also, there is some indication that niacinamide might have (in vitro) antiviral effects (Moëll et al., 2009; Murray & Srinivasan, 1995). It also may have anti-inflammatory immunomodulatory effects (Hedman et al., 2006).

 

[Pyrrhus]

Has any rationale been given for the use of nicotinic acid (flushing type, typically called niacin) rather than niacinamide (non-flushing type, also called nicotinamide)?

I asked the same question on a Long Covid forum. I was told that the flushing reaction increases blood flow, which makes some people feel better. May not be the best rationale, but it's a rationale.

 

[Judee]

Has any rationale been given for the use of nicotinic acid (flushing type, typically called niacin) rather than niacinamide (non-flushing type, also called nicotinamide)?

That's a good question. I have a really hard time with the flushing kind. I can't breathe and it feels like I'm having a heart attack or something.

I asked the same question on a Long Covid forum. I was told that the flushing reaction increases blood flow, which makes some people feel better. May not be the best rationale, but it's a rationale.

Thanks for asking.

 

[Countrygirl]

Im hearing he gets them to 60% at 33:10 in the video, where did you get 97%?

Very interresting stuff though.

He gets 60% of patients to 97% of their former health. The Facebook page which is following his protocol tell me that it is much higher than that as just about all improve considerably. A friend of mine with Long Covid told me it 'turned everything around' for him.

I have been following the Facebook group for about 18 months who have been trying this protocol under Dr Wentzel's guidance and most of them have improved significantly.

The normal pattern is that after only less than a week on the protocol they notice a marked improvement. Then it plateaus and they slowly improve from then on. However, if they stop the protocol then they relapse.

I am told they think it is a life-long protocol if they are to maintain their improvement.

The group leader says that nearly all people return after about 18 months to about 97% of their former health. Some of these could have recovered anyway, of course.

It can interfere with iron levels and I know one person who, after 18 months, has had to stop if for that reason.

I also read a research paper that claimed that high levels of flushing niacin can trigger macular degeneration and that it also impacts glaucoma. As I have one and am at high risk for the other, I stopped taking it.

Flushing niacin also thins the blood and it is thought that it may help increase the blood flow through the capillaries and could flush out micro-clots and help prevent their formation.

A friend with severe ME had been taking just the flushing niacin and has increased the dose to about 200mg a day, divided into 3 doses (as Dr Wentzel recommends) and she says her ME has improved by about 20% after a couple of weeks.

 

[anne_likes_red]

Has any rationale been given for the use of nicotinic acid (flushing type, typically called niacin) rather than niacinamide (non-flushing type, also called nicotinamide)?

I'll urge you and anyone else considering it to be very cautious with high-dose nicotinic acid. It has been known to cause toxicity at 750mg, and even at 500mg if using sustained release forms (ref; ref2). Unless there is something specific about nicotinic acid to justify using it this way, niacinamide is much safer at high doses. Niacinamide doses up to 1000mg have been used safely (Chen et al., 2015), and even up to 3000mg in one study (Murray et al., 2001). Beyond 3000mg, niacinamide also produces toxicity (Huber & Wong, 2020).


I've not watched it yet, but I'm curious why he is using it. In the setting of chronic infection, the kynurenine pathway would be expected to be driven at higher levels, which could shunt tryptophan away from its other important uses in the body, causing blood levels to drop (as has been shown in some CFS studies, but not all). It has been shown that high-dose niacinamide can restore blood tryptophan levels in HIV patients (ibid.), possibly by putting backpressure on kynurenine pathways.

Also, there is some indication that niacinamide might have (in vitro) antiviral effects (Moëll et al., 2009; Murray & Srinivasan, 1995). It also may have anti-inflammatory immunomodulatory effects (Hedman et al., 2006).

I'm being reasonably cautious, I think. Thanks for the heads up.
The discussion from 31.45 explains Dr Wentzel's rationale for nicotinic acid over niacinamide. It seems other forms of B3 get people improvement but not as much as they'd like.
One thing I'd been hearing a bit about in Long Covid circles is the receptor that drives the NA vasodilation - GPR109A - and a possible link to butyrate production.
I experienced significant improvement in the past (very short term remission) using pre and probiotics to increase butyrate which is why I decided to trial the addition of nicotinic acid to my exisiting supplements. I'm not using a sustained release form.

 

[anne_likes_red]

He gets 60% of patients to 97% of their former health. The Facebook page which is following his protocol tell me that it is much higher than that as just about all improve considerably. A friend of mine with Long Covid told me it 'turned everything around' for him.

I have been following the Facebook group for about 18 months who have been trying this protocol under Dr Wentzel's guidance and most of them have improved significantly.

The normal pattern is that after only less than a week on the protocol they notice a marked improvement. Then it plateaus and they slowly improve from then on. However, if they stop the protocol then they relapse.

I am told they think it is a life-long protocol if they are to maintain their improvement.

The group leader says that nearly all people return after about 18 months to about 97% of their former health. Some of these could have recovered anyway, of course.

It can interfere with iron levels and I know one person who, after 18 months, has had to stop if for that reason.

I also read a research paper that claimed that high levels of flushing niacin can trigger macular degeneration and that it also impacts glaucoma. As I have one and am at high risk for the other, I stopped taking it.

Flushing niacin also thins the blood and it is thought that it may help increase the blood flow through the capillaries and could flush out micro-clots and help prevent their formation.

A friend with severe ME had been taking just the flushing niacin and has increased the dose to about 200mg a day, divided into 3 doses (as Dr Wentzel recommends) and she says her ME has improved by about 20% after a couple of weeks.

I would love to join that group. I don't have Long Covid but I presume it would be OK to follow along. If I can't find the group maybe I'll send you a PM?

 

[Countrygirl]

I would love to join that group. I don't have Long Covid but I presume it would be OK to follow along. If I can't find the group maybe I'll send you a PM?

The group is Post Acute Covid Syndrome 19, @anne_likes_red

 

[anne_likes_red]

The group is Post Acute Covid Syndrome 19, @anne_likes_red

Thanks so much. x

 

[Countrygirl]

Thanks so much. x

I should add the information is disseminated via zoom meetings as it is part of a research trial. You may not find the FB page itself very helpful.

 

[GlassCannonLife]

@Countrygirl , is the screenshot of a protocol that @anne_likes_red posted above the one that is working for all of those people? It seems quite basic.. Is the key to their recovery just the niacin/nicotinic acid.?

I wonder if it is altering their methylation - doesn't it essentially work as a methyl group dumper? Very interesting if it's working for them all but I can't imagine this being effective for ME in general.. Have any pure-ME people tried this?

 

[Countrygirl]

@Countrygirl , is the screenshot of a protocol that @anne_likes_red posted above the one that is working for all of those people? It seems quite basic.. Is the key to their recovery just the niacin/nicotinic acid.?

I wonder if it is altering their methylation - doesn't it essentially work as a methyl group dumper? Very interesting if it's working for them all but I can't imagine this being effective for ME in general.. Have any pure-ME people tried this?

@GlassCannonLife Yes, it is whole protocol. It doesn't cure, but the group organiser says that the majority...nearly all, I believe it is correct to say, based on the information I have been given. return to about 97% of their former level of health after about one year of religiously taking the 'stack'. HOWEVER, I recall the group concluding that the protocol needed to be started by the time that they had been ill for seven months as it became less effective after that time.

I queried how they would know that the patients weren't naturally recovering and the answer was because if they stopped the protocol they relapsed quickly.

 

[anne_likes_red]

@Countrygirl , is the screenshot of a protocol that @anne_likes_red posted above the one that is working for all of those people? It seems quite basic.. Is the key to their recovery just the niacin/nicotinic acid.?

I wonder if it is altering their methylation - doesn't it essentially work as a methyl group dumper? Very interesting if it's working for them all but I can't imagine this being effective for ME in general.. Have any pure-ME people tried this?

I'm a pure ME person. I was taking everything on that list (a little variation on the type of folate and selenium) except I was using Nicotinamide Riboside plus a small amount of transdermal niacinamide. I only noticed improvement after adding niacin.
Way back, early 1990s, my GP trialed me on a treatment of high dose Vit C along with B complex including flushing niacin and I think a few minerals too. I took this formula twice a day for a year or so and I didn't notice any improvement then.
It could be the CD38 supression with quercetin - I'm using apigenin too for that - helps get NAD+ levels higher than otherwise and that's how I'm feeling the benefit? Pure speculation there.
I'd be happy to leave elements on that list out and test, only I'm not likely to be able to avoid being exposed to Covid in the next few weeks, so I'd rather leave things as they are for a bit as they seem to be helping a lot.

 

[Martin aka paused||M.E.]

Hi Martin,

Any improvement after the first or second treatment? Hope you feel better soon. We're all rooting for you!

Unfortunately not

 

[Judee]

Unfortunately not

 

[Marylib]

Unfortunately not

I'm sure you are still in recovery mode from the effort, but I guess no one had any guidance for you? I know everyone here was hoping it had some good effect for you this time.