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

[Sidereal]

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

Yes, but NO donors paradoxically raise BP in some ME/CFS patients.

 

[adreno]

My symptoms (OI in particular) gets worse with compounds that increase NO. Arginine and citrulline made me feel downright horrible.

 

[Sidereal]

My symptoms (OI in particular) gets worse with compounds that increase NO. Arginine and citrulline made me feel downright horrible.

Hydroxycobalamin which is a NO scavenger gets rid of my POTS for a few hours but repeated doses make me sick with inflammation.

 

[kangaSue]

My symptoms (OI in particular) gets worse with compounds that increase NO. Arginine and citrulline made me feel downright horrible.

Before resorting to prescription NO donors, I tried both arginine and citrulline supplements but with my G.I. issues, I didn't tolerate them at all where as nicorandil caused no issue except for the anticipated headaches which I was able to avert by starting from a low dose.

 

[kangaSue]

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?

As others have said, that's the paradox, NO donors reduce b.p. in hypertension but in normotension in healthy people, b.p. isn't affected for the most part and in hypotension with underlying illness, b.p. can be boosted. I also now use nitrate patches (Nitro Dur) along with taking nicorandil which gives me a few extra points on b.p.

 

[kangaSue]

@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?

I read that Adempas affects the rate of stomach emptying so might not be a good option if G.I. issues are also complicating things. Nicorandil and other nitrates actually help with stomach emptying by relaxing a rigid stomach when peristalsis is impaired.
I had no side effects from nicorandil by titrating up the dose in 4 day blocks, 5mg once daily then 5mg twice daily and plateaued at 10mg twice daily. A minor skin issue has been my only side effect which requires a bit of steroid cream occasionally.

 

[Avena]

I have tried 2-3g L-Arginine at night for about a month (I am very sensitive and have to start low). I do experience some positive effects, and would like to continue. But I think it causes dilated blood vessels – it appears both as increased redness around my nose and as hemorrhoids. Any tips on how to avoid this? I did a google search and found that horse chestnut could strengthen the vessels. Any experiences?

 

[deleder2k]

Why do you take it nightly? I am not sure, but I think you would take it early in the morning. I am not sure if arginine in the night will do you much good..? It has a pretty short half-life (2-3 hours), so it looks like one need it 3 times a day.

 

[Avena]

Why do you take it nightly? I am not sure, but I think you would take it early in the morning. I am not sure if arginine in the night will do you much good..? It has a pretty short half-life (2-3 hours), so it looks like one need it 3 times a day.

It makes me really sleepy (most amino acids seems to have that effect on me)... Also, the symptoms they have effect on for me is worst at night. But it is only a start, I assume I will build up tolerance and be able to take them more than once a day after a while.

 

[Docmoze]

I see that Minoxidil is listed. The same is the combo of L-arginine and L-Citrulline. This is exciting.

Is Minoxidil available in a pill form? It is used to prevent hair loss in men.. Not sure if you should drink that though

I am a natural practitioner ....That combination or another might be the best hair loss remedy..... I suggest you cleanse before expecting any magnificent results...Toxicity blocks the healing channels and give you the impression the product do not work.....Find see a qualified Homeopathic practitioner for energy cleansing medicine...Added advice, also supplement with multi vitamins with mineral...including colloidal trace minerals (elements)....I would explain briefly...you can research it yourself...There are minerals you require in large quantities (The word large large here is relative) and then there are trace minerals in colloidal form.( get the trace minerals from a source such as the red sea or ancient lake. ... The people that live to 120 to 130 years live in regions where the water comes from mountainous regions and look sort of white when held up to the light. some areas have over 85 different minerals
which includes trace minerals... without these minerals your body is running on empty...most soils are so over used 3 minerals are added which make the produce grow fast .and large but lack around 65 minerals which are needed by the body to be healthy. The produce looks marketable and few give a darn if you are dying slowly....go on the internet and type in 4 words ... Dead Doctors don't lie .... The average life expectancy of A doctor in the USA is 57 years.... Sorry to say, the foods we eat , lack the sustenance we require for a healthy life. This information put to use should bring wellness..... Most people who are balding have high testosterone levels
if balding is not a family trait, the above adhered to should bring much wanted results from Doc Gordon

I see that Minoxidil is listed. The same is the combo of L-arginine and L-Citrulline. This is exciting.

Is Minoxidil available in a pill form? It is used to prevent hair loss in men.. Not sure if you should drink that though

 

[Thinktank]

I am a natural practitioner ....That combination or another might be the best hair loss remedy..... I suggest you cleanse before expecting any magnificent results...Toxicity blocks the healing channels and give you the impression the product do not work.....Find see a qualified Homeopathic practitioner for energy cleansing medicine...Added advice, also supplement with multi vitamins with mineral...including colloidal trace minerals (elements)....I would explain briefly...you can research it yourself...There are minerals you require in large quantities (The word large large here is relative) and then there are trace minerals in colloidal form.( get the trace minerals from a source such as the red sea or ancient lake. ... The people that live to 120 to 130 years live in regions where the water comes from mountainous regions and look sort of white when held up to the light. some areas have over 85 different minerals
which includes trace minerals... without these minerals your body is running on empty...most soils are so over used 3 minerals are added which make the produce grow fast .and large but lack around 65 minerals which are needed by the body to be healthy. The produce looks marketable and few give a darn if you are dying slowly....go on the internet and type in 4 words ... Dead Doctors don't lie .... The average life expectancy of A doctor in the USA is 57 years.... Sorry to say, the foods we eat , lack the sustenance we require for a healthy life. This information put to use should bring wellness..... Most people who are balding have high testosterone levels
if balding is not a family trait, the above adhered to should bring much wanted results from Doc Gordon

No it doesn't.

 

[deleder2k]

@Docmoze, thank you for your reply, but I don't believe in any of that.

I stick to this: http://www.theguardian.com/lifeands...condition-australian-report-finds?CMP=soc_567

 

[Chris]

I have long had nasty high Systolic BP spikes--often after "exercise," but occasionally during the night, or just anytime. So having read the Mella and Fluge thing I got my cardio to prescribe Isosorbide Dinitrate just to try. He prescribed 10mg three times daily. In all innocence I took my first pill--BP down to 97/56 and HR up to 98, where it stayed for some time--tiring! Talk about Persantine... So next day tried 1/4 pill twice a day--worked fairly well, though gave me a mild headache.
But simultaneously I was trying Low Level Light Therapy (we have a thread too) and using a Vielight 633, which the maker, Lew Lim, claims lowers BP. Well, it does, after a while, and I have now pretty much given up the Isosorbide (very cheap, by the way); whether I can keep this up remains to be seen. I have also increased my intake of beets and beet greens--another way to get those nitrates. I have noticed generally that when my BP goes down my HR tends to rise--clearly there is a degree of complementarity mediated by the ANS. I am hoping that slowly it is learning to provide better control.....

 

[deleder2k]

Anyone tried either isosorbide mononitrate (imdur) or glyceryl trinitrate (nitrolingual spray) lately?

 

[Rooney]

Because of this thread, I am on Imdur two weeks with good success. I asked my cardiologist for it as I have been having heart pain and new hypertension. It has done wonders for both. I was more active in my first week on the drug, but pushed too much.

I am sick 15 years (viral onset) with confirmed POTS. In the beginning I had OI and HYPOtension. I think I have a virus effecting my heart, otherwise the Imdur would have allowed for more activity. I feel particularly sick in recent months. Fearful now of being a cardiac patient even though my ecocardiogram looks good. I'm in my mid-fifties and my weight is OK. Vascular, it seems.

One problem with Imdur is constipation, literally my eternal pain in my backside. So taking Miralax as two gastric docs have suggested anyway. I have SIBO, too.

Delender2k, thank you for all your posts from Norway! They give us such hope.

 

[deleder2k]

Very interesting! How many mg do you use? 60?

 

[Rooney]

Very interesting! How many mg do you use? 60?

30mg extended release upon rising in the morning. The first week I waited until I ate to slow it from hitting my brain. No headache, but a weird blurry vision thing.

 

[deleder2k]

Aha... I tried it once. Started at 30mg, went all the way up to 120mg extended release. Didn't do much for me. I kinda hoped for some effect since alcohol works very well for me. It also dilates vessels.

 

[kangaSue]

One problem with Imdur is constipation, literally my eternal pain in my backside. So taking Miralax as two gastric docs have suggested anyway. I have SIBO, too.

@Rooney, You could try switching to GTN patches. My issue is mostly chronic g.i. dysfunction but with some autonomic neuropathy stuff going on too, with Imdure I also get constipated as well as bad gut pain after a few days but the GTN patches cause me neither.

Re POTS an autoimmune cause has been found for some cases.
http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

 

[Rooney]

@Rooney, You could try switching to GTN patches. My issue is mostly chronic g.i. dysfunction but with some autonomic neuropathy stuff going on too, with Imdure I also get constipated as well as bad gut pain after a few days but the GTN patches cause me neither.

Thanks a HEAP! I'll ask for the switch. This helps me confirm my suspicion about the GI side effect. Such a long thread - so glad you're keeping up.

Just another reason to love Australia!