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I took Nitroglycerin tonight and it helped! What does this mean?

Mary

Moderator Resource
Messages
17,334
Location
Southern California
It seems like we are all so different in what we react to! Did he say anything specific re: the coxsackie B4? (the one I am positive on.)

I don't remember him saying anything in particular re the coxsackie B4. I did ask him if one virus in particular might be responsible for what was going on with me, but he didn't really respond. I think maybe he just didn't know.

I have asked my doctor about Inosine several times and he always says no and I am not sure why he feels it is not right for me. I remain very curious about it and may ask him again (but not right now.)

One more thing - that article I linked above re inosine also talks about other antivirals which might be helpful.

I am very interested in BCAA and glutamine and had planned to PM you to ask some questions but never got that far! We already have both products at home and I took glutamine for a long time for GI issues in 2013 but have never taken BCAA. My husband really wants me to try it.

That's fine if you want to PM me -- good luck --
 

nandixon

Senior Member
Messages
1,092

parvofighter

Senior Member
Messages
440
Location
Canada
Hi Gingergrrl, My apologies - my notifications don't seem to be on, so I didn't realize you had responded yet. OK, I've had an email directly from our ME specialist - will get back to him today with more info today. Will PM you too. Hang in there.

Parvo
 

Gingergrrl

Senior Member
Messages
16,171
Hi Gingergrrl, My apologies - my notifications don't seem to be on, so I didn't realize you had responded yet. OK, I've had an email directly from our ME specialist - will get back to him today with more info today. Will PM you too. Hang in there.

Parvo

I am confused (and may be misunderstanding your post) but are you contacting my doctor re: my case? If so, I would prefer that you don't as I am actively discussing my status with my ME doctor and cardio and don't want to bother or confuse them. I appreciate your help and info but prefer to discuss this directly with my doctors myself. I hope you can understand! And if misunderstood I apologize!
 

parvofighter

Senior Member
Messages
440
Location
Canada
Hi Gingergrrl - no worries - I wouldn't be so presumptive. He emailed me about you. We had discussed a "3rd party" in the past - all of this is without identifying info. I have PM'd you.
 

SOC

Senior Member
Messages
7,849
I have asked my doctor about Inosine several times and he always says no and I am not sure why he feels it is not right for me. I remain very curious about it and may ask him again (but not right now.)
What does your NK cell function look like? I was told inosine was not appropriate unless I had low NK cell function, which I don't.
 

Gingergrrl

Senior Member
Messages
16,171
Hi Gingergrrl - no worries - I wouldn't be so presumptive. He emailed me about you. We had discussed a "3rd party" in the past - all of this is without identifying info. I have PM'd you.

Sorry and I am really confused now what to think!
 

Gingergrrl

Senior Member
Messages
16,171
What does your NK cell function look like? I was told inosine was not appropriate unless I had low NK cell function, which I don't.

@SOC My NK functioning is very low. It was five when first measured in July 2014 and is now six as of Dec 2014.
 

Gingergrrl

Senior Member
Messages
16,171
@Hip

I did feel very guilty about causing all this ill health originally, but now I realize that I am just a link in the chain of the spread of this virus, as was the person I caught it from, and the person they caught it from, etc.

That's good and am glad you do not feel guilty about this any more.

I just wish medical researchers would get on with developing vaccines and antivirals for enteroviruses.

Me, too! Is coxsackie B4 (what I have) the worst one or are they all pretty bad?

I really don't know how common it is for enteroviruses like coxsackievirus B to cause chronic sore throats and chronic sinus / nasal congestion. This might be just a peculiarity of my virus. Not everyone with my virus has the chronic sore throat and chronic sinus / nasal congestion, though at least one of these is common.

It must be a different version b/c I do not have that (except for the severe throat & tonsil issues during mono.)

Yes, no treatment was given. But I read that there is no standard treatment for chronic myocarditis.

That is what I am finding, too. That even if I assume that I have a virus in my heart (or that many with ME/CFS have this) that there really is no treatment. I am hoping someone will jump in and correct me if this is wrong.

As far as I am aware, Valcyte has not been tested for chronic enterovirus infections. But I have to wonder whether it might be helpful for enterovirus. As you know, Valcyte is an antiviral for herpes family viruses, but in Prof Montoya's work using Valcyte for ME/CFS patients, he speculated that as well as being an antiviral, Valcyte might also fight these herpes family viruses by being an immunomodulator as well.

My understanding is that you are correct on both counts- 1) That as an anti-viral, Valcyte, is not for enterovirus but 2) As an immune mod or anti-inflammatory, it can work to improve the immune system to fight all viruses. Is that how you see it, too?

I have been taking 400 mcg of yeast-free selenomethionine (one of the most absorbable forms of selenium) per day for a few years now, and as soon as I stop taking it, within around 5 days, I can feel my energy drop and my brain fog increase. I have tested this quite a few times, and so I am fairly confident that selenium helps me.

Thank you for this info and it was really helpful and I read the study that you linked re: Selenium fighting coxsackie B viruses in the heart (in mice.) I increased my Selenium today from 100 mcg to 200 mcg and am now taking it without food (and was already taking the exact version that you recommend.) Hoping it will help and assume it cannot hurt.

Thanks again!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The virus appears to get stuck inside cells and doesn't seem to kill the cells like it's supposed to.
This has been worked out, enteroviruses have several lifecycles, only one of which is lytic. In no case are these other lifecycles "latent" except in the sense they typically do not start another acute infection. That is, they are non-lytic but still do stuff.
 

Gingergrrl

Senior Member
Messages
16,171
@zzz

I really appreciate all the time and effort you put into your response and will keep my questions brief!

Those people who are familiar with my posts undoubtedly know what's coming next.

I'll admit... I did know this time LOL.

Dr. Goldstein listed all the usual suspects as possible triggers for ME/CFS. But the exact mechanism by which glutamate and nitric oxide became imbalanced was unidentified. In recent years, strong evidence has emerged for a microglial inflammatory process in the brains of ME/CFS patients. And some of the results of this type of inflammation are toxic amounts of glutamate and nitric oxide.

If there are already toxic amounts of nitric oxide, then how does Nitroglycerin help some people? And how does the toxic amount of glutamate relate? @Mary said that l-glutamine helps her (but I am not sure if this is the same thing or something totally different with a similar name?)

For those who are interested, I'll be posting a detailed thread about the theory and use of low dose Valcyte in the near future. I'll also discuss new evidence I have found that Valcyte may be helping mitochondrial functionality.

Definitely, we are all very interested in this (especially since I am taking low dose Valcyte myself!) although I am not pulsing it and taking it every day.

@Gingergrrl, I think that it was the combined effect of these two drugs that had such a strong effect on your autonomic symptoms when you were receiving relief from the Valcyte, and that as the inflammatory reactions from your latest traumas gradually subside with the help of these two drugs, you will be able to experience the same effect again, and be able to continue your recovery.

That is what I am deeply hoping for b/c I had some immediate improvements from low dose Valcyte and from Magnesium that are gone now (but I am hoping they return!)

The overall action is similar, but a nitroglycerin patch appears to be somewhat more effective than Isordil. Dr. Goldstein prescribed nitroglycerin patches for his patients who responded positively to the sublingual version of nitroglycerin.

Thanks and was curious re: Goldstein's opinion of this and it sounds like now Fluge & Mella are working on getting a patent on a Nitro related product for ME/CFS. I suspect my cardio will be recommending this patch for me at my appt later this week.

At the top of page 4 of Betrayal by the Brain, you will find microvascular angina listed by Dr. Goldstein as one of the disorders that should be amenable to his neurosomatic treatments. In other words, you may very well have microvascular angina, but if so, it is of autonomic origin just like your POTS symptoms, and will respond to the same treatment. Early on in your nebulizer treatments, you commented on how they reduced your angina significantly. And early on in my own nebulizer treatments, I could feel my angina lessening during the treatment. This is far too fast a reaction to be anything other than neurological.

Thank you and I will look at page 4.

There is the question of why nitroglycerin initially had no effect for you, and now it does.

I have not had another episode since I took the Nitro but when I do (which I will) then I will try it again and see how it works. When I last saw my cardio in Dec or Jan (?) I had never tried the Nitro. But now I have tried it twice so I can give him actual feedback on how it worked each time. I will also tell him about the new mast cell/histamine issue and the new coxsackie B4 positive test.

As you have been on a therapeutic dose of Valcyte for a number of days, the inflammation may have dropped to a level where the nitroglycerin could work.

That is what I am hoping (although I know my cardio will not know anything about this concept.)

@Gingergrrl, it is certainly possible that you have an active Coxsackie B viral infection. But as you have noted, you cannot tolerate Dr. Chia's drugs. The best way for you to fight such an infection, if it exists, is with an enhanced immune system, and Valcyte will give you that over time on your current regimen. Without a reasonably functioning immune system, an antiviral can't completely eradicate viral activity anyway.

I have a titer on CB4 of 1:160 but I guess there is no way to know for sure if it is active. The test results and my doctor said that a fourfold increase from prior test would prove active infection (which would be 1:640- which I do not have) so it seems there is no way to confirm for sure, if I understood him correctly. And I agree with you that I need my immune system to kick in to fight these viruses and hoping the Low dose Valcyte will do that. Also hoping that reducing all this histamine stuff will help.

Thanks again!
 

Hip

Senior Member
Messages
17,824
Is coxsackie B4 (what I have) the worst one or are they all pretty bad?

I am not too sure.


Thank you for this info and it was really helpful and I read the study that you linked re: Selenium fighting coxsackie B viruses in the heart (in mice.) I increased my Selenium today from 100 mcg to 200 mcg and am now taking it without food (and was already taking the exact version that you recommend.) Hoping it will help and assume it cannot hurt.

From the feedback I received on my selenium thread, it seems those diagnosed with enterovirus infections do well on selenium, and notice improvements in their ME/CFS after around 10 days. So you may want to be on the lookout for improvements at the 10 day stage. But most other people found that the higher doses of selenium seemed to cause an overestimating effect in their mind, so they had to discontinue.
 

halcyon

Senior Member
Messages
2,482
This has been worked out, enteroviruses have several lifecycles, only one of which is lytic. In no case are these other lifecycles "latent" except in the sense they typically do not start another acute infection. That is, they are non-lytic but still do stuff.
I'm a little bit behind on some of the research that Hip has dug up, but I wasn't aware that it had been determined why this happens. The folks at University of Nebraska found that the persistent virus had genome deletions, but then another group demonstrated persistence without the deletions.

It seems like a complete evolutionary dead end behavior. What good is a viral infection that can't shed and infect others?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
It seems like a complete evolutionary dead end behavior. What good is a viral infection that can't shed and infect others?

I consider it a very smart evolutionary adaptation. It does not kill the host. It persists. And it most definitely DOES result in further acute viral infection. The issue is what happens the next time you get infected by a similar virus. The existing and the new infection interact. The existing virus can damage your immune response. The two viruses can mix and create a new version.
 

Hip

Senior Member
Messages
17,824
It seems like a complete evolutionary dead end behavior. What good is a viral infection that can't shed and infect others?

I think that this was always the conundrum among virologists: why does enterovirus (and other viruses) create this non-cytolytic infection? It there any purposes to it, or is it just a purposeless accident?

Some answers to this question recently emerged: a paper published in 2013 (info here) found that in the case of dengue virus (another virus which creates non-cytolytic versions of itself), the non-cytolytic dengue virus infections actually help increase the rate of transmission of the regular dengue virus into new hosts.


So it seems that for dengue, the combo of regular plus non-cytolytic virus provides survival advantages for the virus. We might assume that the situation for enterovirus may be similar.
 

SOC

Senior Member
Messages
7,849
@SOC My NK functioning is very low. It was five when first measured in July 2014 and is now six as of Dec 2014.
Yikes! :eek: My daughter's has been that low and she gets inosine. Hard to know what your doc is thinking. Maybe it has to do with how sensitive you are to meds...?