Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

[alex3619]

The issue with Resveratrol is that it is a phosphodiesterase inhibitor, and anything inhibiting phosphodiesterase 5 can interact with a NO donor. However it is primarily a phosophodiesterase 4 inhibitor, but its not entirely specific. Its also the case that it can protect and extend the function of NO donors. The primary risk seems to be that it may substantially increase the effective dosage. This is not necessarily a bad thing but could lead to more OI related symptoms. I currently regard this as an open question. Its also possible that using Resveratrol will prevent or slow the development of tolerance to isosorbide.

Its also possible my air hunger is related to something else, including a sensitivity to tomato. I am still trying to figure this out.

I am not yet convinced that emodin is an issue using my Resveratrol dosage protocol. I am not taking it like most people do, it is titrated to eliminate my breathing hyper-reactivity problem. In any case the symptoms are not apparently gastrointestinal, though given that they may be blood volume related then the gastrointestinal vasculature may be important.

 

[Abdulrahman]

The drug induced headaches are almost gone. I have slightly more physical energy, especially after resting. Its still nothing like it should be though. My cognitive function is not improved. Cold tolerance is improved (probably due to increased peripheral vasodilation). This warrants a longer test, but so far has resulted in no dramatic improvement. Some nights I think it has seriously improved sleep quality, other nights I think its done the opposite. I am still trying to figure that out. A confounder with me is I suspect its interacting with Resveratrol which I also take.

Alex,

In that case i would suggest using only the sublingual type, 10 mg tablets nitro tabs. I noticed that those who succeeded to eliminate CFS with Nitroglycerine, used sublingual tablets. In my view of CFS, it make sense to deliver the highest concentration of Nitric Oxide to the saliva [ and later blood], as the Herpes virus gang HHiV-6, EBV, and CMV all reside in our salivary glands, so they would be directly poisoned by such an onslought of high concentration Nitric Oxide.

Thats my humble opinion.

 

[kangaSue]

I want to read this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562584/

Its a full paper.

However here is my take on alcohol. It drives production of free radicals from the mitochondria. So if NO and radicals are both raised, so is peroxynitrite. Its not the way to go for most of us, though it does raise questions as to whether there might be a subset who benefit.

Tolerance to nitrates and problems metabolizing alcohol both relate to them suppressing aldehyde dehydrogenase ALDH2, which drives the production of free radicals from the mitochondria. Both can be improved on by supplementing the molecule alda-1, whatever that happens to be.
http://www.science20.com/news_articles/alda1_repairs_defective_alcohol_metabolism_enzyme

 

[alex3619]

I am now getting consistently better sleep on isosorbide m. but my circadian issues are unabated.

 

[kangaSue]

There are some big differences in the therapeutic profiles between the organic nitrates, dose rates are also an influencing factor on efficacy so it would be necessary to try the different types before concluding they don't work for you. http://circres.ahajournals.org/content/97/7/618.full

 

[gregh286]

hi @alex3619 and @Abdulrahman .

hey guys...are you still experimenting with nitro tabs.?

 

[alex3619]

hey guys...are you still experimenting with nitro tabs.?

Yes. So far so good. No miracle improvements, but I have better sleep, better cold tolerance, and better peripheral circulation. There could be more benefits over time as well.

Please keep in mind I am a very long term patient This might mean it takes longer to work, or that it will not work as well as it might for some.

 

[leokitten]

I don't agree with their recommended combo of l-arginine and l-citrulline. Taking l-arginine is actually not the best way to boost l-arginine and thus NO levels for a variety of reasons.

See here:
http://examine.com/supplements/Citrulline/
http://examine.com/supplements/Arginine/

It's much better to only take l-citrulline in large doses, such as 5g bid

 

[Abdulrahman]

hi @alex3619 and @Abdulrahman .

hey guys...are you still experimenting with nitro tabs.?

Hello,

Unfortunately during the five day expereiment with NO, i had a heavy infection with influenza virus...just after an Epstein Barr flare. Last two days recovered from a bacterial pnuomonia using Levofloxacine antobiotic 500 mg per day, feel very well today. Too early to judge if any major effect on my Chronic Fatigue, will wait a few more weeks before giving more results. So sorry, its hard to judge at this time, however, had no harmfull effects at all, just had an excessive sex drive for one week straight while on the NO....

This tells me i was definately low on NO concentration........thats good to know.

 

[Abdulrahman]

hi @alex3619 and @Abdulrahman .

hey guys...are you still experimenting with nitro tabs.?

Update June 8, 2015:

Gregh,

I am doing very well now expecially after eliminating the bacterial infections with a 12 day course of Levofloxacin Antibiotic. Something has definatly changed in my body because sleep is far deeper, energy is more constant and athigher levels during the day. So far no flare up of Herpes viruses.

One of the few times in 21 years that i feel like a normal healthy human being.......

If this feeling lasts up to same time in July, 2015 then i will attribte the positive affect to Nitric Oxide treatment.

Abdulrahman

 

[gregh286]

@Abdulrahman
Good to hear you got some relief.
I see you are taking 10mg.....this is the smallest tablet dosage of nitro I can find. How many do you take each day?
Also you mention herpes family likes to live in saliva glands.....where do you get that information from.

It strange as I suffer from very dry mouth in crashes.....autoimmune attack on saliva glands.....also in Sjorgens syndrome a dry mouth and eyes are primary symptoms.....they give plaquenil for sjorgens but they really dont know how and why it works......maybe prohibiting herpes virus resident in glands.

 

[Abdulrahman]

@Abdulrahman
Good to hear you got some relief.
I see you are taking 10mg.....this is the smallest tablet dosage of nitro I can find. How many do you take each day?
Also you mention herpes family likes to live in saliva glands.....where do you get that information from.

It strange as I suffer from very dry mouth in crashes.....autoimmune attack on saliva glands.....also in Sjorgens syndrome a dry mouth and eyes are primary symptoms.....they give plaquenil for sjorgens but they really dont know how and why it works......maybe prohibiting herpes virus resident in glands.

Hi Greg,

I took the 20 mg size capsules [ did not find tablets which are best], and then emptied the capsule contents into my mouth and chewed slowly for 20 minutes, twice daily 10 hours apart for 7 days total. On last two days was able to take three capsules 6 hours apart as headaches reduced.

For the Epstein Barr, CMV and HHV-6 family of dangerous herpes viruses, these all reside in the Salivary Glands primarily. Just make a google search of the subject. This means the best way to attack the virus is to put substances toxic to viruses but safe for human consumption, into our mouth and use that to directly attack the virus. Sucking on such substances infuses the salivary glands with that substance and delivers the toxicity at the least possible body concentration. While sucking on tablets or capsule contents for 20 minutes, dont swallow the saliva- just keep recirculating it in the mouth, this forces the medicinal chemicalinto the saliva glands at very high concentration,killing off the viruses residing there.

Persistence of Epstein-Barr virus in salivary gland biopsies from healthy individuals and patients with Sjögren's syndrome.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1541970/

Good Luck,

Abdulrahman

 

[gregh286]

@Abdulrahman ..thanks...interesting.

 

[Sasha]

@Jonathan Edwards - are NO donors already used in other areas of medicine for things that PWME might have, either as common ME symptoms or as reasonably common co-morbidities?

Given that it was a cardiologist using the NO donor for this patient, I'm wondering if NO donors are likely to be used in the treatment of orthostatic intolerance (which so many of us have).

 

[kangaSue]

@Sasha - I can't speak for PWME as my problems all relate to gastrointestinal issues (and this forum is an excellent resource for info about that) but I was prescribed an NO donor (nicorandil) for gut pain from intestinal ischemia as some of the NO donors are also effective peripheral artery dilators, improving blood flow and oxygenation capacity to organs other than the heart and to the bodies extremities. In my case, the bonus, other than pain relief, was an increase in my blood pressure also which is always on the low side, around90/60.

This, in part, has something to do with NO donors being calcium channel inhibitors I think. I recall reading that inappropriate calcium influx is one of the problems encountered by PWME so perhaps that is one of the mechanisms that can be improved on for some by taking an NO donor.

 

[MeSci]

@Sasha - I can't speak for PWME as my problems all relate to gastrointestinal issues (and this forum is an excellent resource for info about that) but I was prescribed an NO donor (nicorandil) for gut pain from intestinal ischemia as some of the NO donors are also effective peripheral artery dilators, improving blood flow and oxygenation capacity to organs other than the heart and to the bodies extremities. In my case, the bonus, other than pain relief, was an increase in my blood pressure also which is always on the low side, around90/60.

This, in part, has something to do with NO donors being calcium channel inhibitors I think. I recall reading that inappropriate calcium influx is one of the problems encountered by PWME so perhaps that is one of the mechanisms that can be improved on for some by taking an NO donor.

If NO donors increase blood pressure I will have to give them a miss! My bp is high - extremely high if I don't take anti-hypertensives. But surely if they dilate blood vessels they will reduce bp?

 

[adreno]

But surely if they dilate blood vessels they will reduce bp?

That would normally be the case.

 

[leokitten]

@Jonathan Edwards - are NO donors already used in other areas of medicine for things that PWME might have, either as common ME symptoms or as reasonably common co-morbidities?

Given that it was a cardiologist using the NO donor for this patient, I'm wondering if NO donors are likely to be used in the treatment of orthostatic intolerance (which so many of us have).

@Sasha also read this other thread dicussing a related, and I believe more important, patent application by Fluge and Mella for the use of sGC stimulators/activators with/out B-cell depletion.

http://forums.phoenixrising.me/inde...treatment-of-cfs-with-b-cell-depletion.37815/

If I'm not mistaken they've had much more success with this over using things like l-arginine or l-citrulline. They include a compelling patient testimonial in the patent app describing how this patient had a very significant improvement in all ME symptoms in just one week after titrating up with Adempas (riociguat).

Adempas is a new drug and the first in its class, so it's very expensive and likely for some time difficult to get prescribed and approved by insurance off-label which is a shame as I feel it would help many PWME in a major way.

@kangaSue I've gotten a prescription for nicorandil to do a trial. Do you have any advice? How were the side effects?

 

[Sasha]

@Sasha also read this other thread dicussing a related, and I believe more important, patent application by Fluge and Mella for the use of sGC stimulators/activators with/out B-cell depletion.

http://forums.phoenixrising.me/inde...treatment-of-cfs-with-b-cell-depletion.37815/

If I'm not mistaken they've had much more success with this over using things like l-arginine or l-citrulline. They include a compelling patient testimonial in the patent app describing how this patient had a very significant improvement in all ME symptoms in just one week after titrating up with Adempas (riociguat).

Adempas is a new drug and the first in its class, so it's very expensive and likely for some time difficult to get prescribed and approved by insurance off-label which is a shame as I feel it would help many PWME in a major way.

Interesting, because it seems to be for hypertension and yet many PWME have OI, which tends to be associated with hypotension.

 

[leokitten]

Interesting, because it seems to be for hypertension and yet many PWME have OI, which tends to be associated with hypotension.

Yes exactly. No one has yet discovered the underlying phenomena involved here but drugs like this actually improve blood pressure in people with hypotension caused by illness. It might be related to improving/normalizing endothelial function.

@kangaSue, who doesn't have ME but had significant hypotension, had her blood pressure improved by nicorandil.