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

[Gingergrrl]

Also, one can try Sophora flavescens separately and avoid the intolerable stuff in Equilibrant.

What is Sophora flavescens? And when you have time, can you explain what lytic means (re: heart symptoms & coxsackie virus.)

 

[Sidereal]

What is Sophora flavescens? And when you have time, can you explain what lytic means (re: heart symptoms & coxsackie virus.)

Sophora flavescens is a Chinese herb from which oxymatrine, one of the active ingredients in Equilibrant, is extracted. It's believed to be effective against enteroviral infections. As @halcyon said, it's immunostimulatory so could be a problem for those with autoimmune disease but I would imagine Chia has seen many patients with Hashimoto's.

Non-lytic just means (in extremely simplified terms) that the virus is latent, not producing signs of acute viral infection that would be obvious even to the stupidest cardiologist. Still damaging, though, if you believe in all this of course.

 

[Hip]

I think you meant to say non-cytolytic enterovirus, @Sidereal, rather than non-lytic enterovirus.

A non-cytolytic enterovirus is one that lives, on a long-term basis, actually inside human cells, as a chronic intracellular infection. These contrast to regular enteroviruses (lytic enteroviruses) which do not stay in cells for long — they just enter a cell to replicate, and then soon after burst out and destroy the cell (lysis) to escape.

There is some info on non-cytolytic enteroviruses in the first few sections of this post.

In acute enterovirus infections, you start of with just regular enteroviruses, but if the infection turns chronic, you can get a portion of the regular enteroviruses changing form, and becoming a non-cytolytic enteroviruses.

In the chronic enterovirus infections you find in ME/CFS and chronic myocarditis, non-cytolytic enterovirus are present, as well as regular enteroviruses. Non-cytolytic enteroviruses can be harder to kill, and these may be playing a major role in ME/CFS.

 

[Gingergrrl]

Dr Jeffrey Towbin (I believe at Cincinnnati Children's); and Dr Noel Bairey Merz - all of these would be good places to start.

@parvofighter I googled both of these doctors and read about them and Dr. Towbin is in Cincinnati and only sees children so does not sound like a viable option for me. Whereas Dr. Bairey Merz is in my same city but her profile states that her focus is heart disease and the role played by mental issues/stress and uses nutrition and exercise as treatment. This of course would all pertain to traditional heart disease but not to ME/CFS and viral causes. Does she have another website besides the info posted on the Cedars Sinai site? I can't find any links to ME/CFS, dysautonomia, viruses, etc, for her.

 

[Hip]

I have a script for nitro right now, and I am hoping if I am well enough I might go with my shopper today and pick it up from the pharmacist. If so I will be testing it soon. I do wonder what percentage of us respond to this kind of therapy.

I am going to be trying nitroglycerin myself soon. I bought some online (30 x 2.5 mg sustained release capsules), and it's just siting here on my shelf, waiting for me to try it, which I will do soon. I don't fancy the headache side effect that can occur with nitroglycerin though; but I read here that anti-inflammatories like aspirin can help:

Aspirin and/or acetaminophen (paracetamol), on the other hand, often successfully relieve isosorbide mononitrate-induced headaches with no deleterious effect on isosorbide mononitrate’s antianginal efficacy.

This applies to isosorbide mononitrate, but I imagine it should work for nitroglycerin too.

I might take some acetaminophen (paracetamol) an hour before I take the nitroglycerin, as a possible headache preventative.

 

[Gingergrrl]

In the chronic enterovirus infections you find in ME/CFS and chronic myocarditis, non-cytolytic enterovirus are present, as well as regular enteroviruses. Non-cytolytic enterovirus are harder to kill, and these may be playing a major role in ME/CFS.

@Sidereal and @Hip I do not know what lytic vs. non-cytolytic means (so cannot dream of questioning this portion of your posts!) but I am curious from all your research, how would you treat the chronic myocarditis if we assume that I have this and my cardio cannot recognize it.

Rather than do a biopsy, I'd just assume that I have it and is there a treatment? This is what I cannot figure out. Is Nitro a treatment for this?

I had mono/EBV in March 2012 but got better and then got a second infection in Jan 2013 in which two weeks later I started having tachycardia. I assumed it was a re-activation of EBV but now I wonder if this was the enterovirus? I was confused b/c I never had any GI symptoms with either infection and the second one was purely a respiratory infection.

@Hip, I know you said several of your peers who got the same enterovirus infection as you died of heart attacks (I think and apologize if I am misquoting you?) but didn't this happen to them soon after infection versus several years later?

Also, how would you treat this (in your opinion of course) besides Equilibriant? Could something like Valcyte help these infections in the heart?

Also, from your second post, I did not get any headache from the Nitro yesterday even though I was expecting to! But the sublingual version burns your mouth like it has acid in it.

 

[Sidereal]

@Gingergrrl, it's my understanding that there are no specific treatments for this problem. Dr Chia uses oxymatrine and other treatments; his patients might wanna chime in.

Nitro doesn't treat the infection, it's just offering you some symptom relief.

I have recently discovered that a supplement which gives a nitrate boost produces rapid symptomatic improvement. No headache. I was very surprised to discover it actually raises my (abnormally low) BP which makes no sense. Then again, what does make sense about this disease? So I'm not surprised to hear nitro has helped you.

 

[Gingergrrl]

@Sidereal What supplement is this?!!! If it boosts your BP and gives rapid relief it may help me b/c we have very similar cases in many ways. You can PM or email me if don't want to say publicly but I am dying to know!

 

[halcyon]

I do not know what lytic vs. non-cytolytic means

It has to do with the lifecycle of the virus. Generically, a virus lifecycle is 1) enter a cell, 2) replicate inside the cell, and 3) exit the cell to infect other cells. The last step can be accomplished in a couple ways. Some viruses use what's called budding, where they exit the cell like a little bubble, taking part of the cell membrane with it but leaving the cell intact. The other way is by killing (aka lysing, hence 'lytic') the cell which allows all the viral copies to spill out of the ruptured cell. This is what enteroviruses do. Some viruses have another step in the lifecycle above, which is latency, where the virus just sets up shop inside the cell and sort of pauses the lifecycle. This is what herpes viruses like EBV do.

Enteroviruses don't technically have the capability to form a latency in the same way. They're referred to as self-limiting because they usually burn themselves out like a fire running out of fuel. The replicated virion spilling out of killed cells meet ever increasing amounts of antibodies in the blood which neutralize them and prevent them from infecting other cells. After a short time there is no viable virus left in the body and the infection is completely cleared. In chronic enterovirus infections, something is going wrong with this process. The virus appears to get stuck inside cells and doesn't seem to kill the cells like it's supposed to. Yet it's still able to express viral proteins and replicate, just at a much slower rate than normal. It's not a true latency like you see with herpes viruses.

 

[Gingergrrl]

@halcyon Thank you for explaining the virus cycle (above) and while I am reading it, I basically grasp it, but then I do not retain it b/c it is a little beyond my knowledge level, so thank you for all your patience explaining some of these things to me multiple times!

 

[Hip]

@Hip, I know you said several of your peers who got the same enterovirus infection as you died of heart attacks (I think and apologize if I am misquoting you?) but didn't this happen to them soon after infection versus several years later?

Also, how would you treat this (in your opinion of course) besides Equilibriant? Could something like Valcyte help these infections in the heart?

Out of the 30 or so people I know who caught my virus as it spread around, there were three previously completely healthy people who suddenly had heart attacks within months of contracting my virus, and one died of their heart attack.

One of these three heart attacks was connected to hospital-diagnosed chronic viral myocarditis (but the hospital did not determine the identity of the virus); his myocarditis went on and he was under observation for it for around a year, I think.

A fourth person who caught my virus developed myocarditis and an associated heart attack around 10 years later. In this case, I am less sure that it was due to the same virus, but it is likely, because this virus seems to be able to stick around for many years in someone's body (causing chronic sore throats, chronic sinusitis, etc). He was just told just to take it easy after his heart attack, which was relatively minor, and his ongoing myocarditis, but was given no specific medication, as far as I am aware.

I think my virus which spread to all these people is most likely a coxsackievirus B or an echovirus. Coxsackievirus B is linked to heart attacks, and is known to cause myocarditis. Here's an excerpt from a previous post:

This study found that 16% of people who died suddenly of a heart attack (myocardial infarction) had a coxsackievirus B infection in the heart tissues.

Given that there are about 225,000 fatal heart attacks per year in the US,† if coxsackievirus B can be proven to be the actual cause of these heart attacks, that would mean that coxsackievirus B is killing 36,000 people per year in the US (about one death every 15 minutes).

If someone has chronic myocarditis from an enterovirus, then possibly some antivirals might help.

I listed all the antivirals for coxsackievirus B and echovirus that I could find in this post. This includes antiviral drugs and herbs. Since you have coxsackievirus B4 and echovirus 11 by your ARUP Lab tests, you might look at some of the antivirals in that post which specifically target CVB4 and EV11. Whether this will help reduce your symptoms, I really don't know. Many are herbs which are obtainable online. I tried many of these herbs, and they did not help my ME/CFS all that much, but I am at a disadvantage in that I do not know which coxsackieviruses and echoviruses I have in my system (I have not taken the ARUP Lab tests), so don't know which specific antiviral herbs and drugs I should take.

The only thing that seemed to significantly improve my ME/CFS symptoms was selenium.

 

[Hip]

You might also want to have a look at the studies cited at the bottom of the first post in this thread:

High Dose Selenium Significantly Improves My Fatigue and Brain Fog

Several of these mice studies (like this study) show that when selenium is deficient, the myocarditis coxsackievirus B infection became more virulent and then caused more heart damage.

 

[Hip]

Also, from your second post, I did not get any headache from the Nitro yesterday even though I was expecting to! But the sublingual version burns your mouth like it has acid in it.

Sounds a bit unpleasant on the mouth.

The nitroglycerin I bought is in a timed-release oral capsule form. I cannot remember why I bought capsules rather than sublingual, but I note that Goldstein specifies sublingual nitroglycerin for ME/CFS purposes.

@zzz do you know if oral timed-release capsules would work similarly to sublingual nitroglycerin for ME/CFS purposes?

 

[Mary]

@Gingergrrl - first, I'm really glad the nitro helped you! I can't imagine dealing with what you do.

Just wanted to throw in my two cents re Dr. Chia and treatment: I tested positive for Echovirus 6 and 9, and Coxsackie B3 and B4. He gave me equilibrant, and it did nothing for me, good or bad, I didn't react at all to it. He then told me to try Inosine. This was over a year ago and the Inosine didn't seem to do anything either.

However, I've recently restarted Inosine, maybe 3 weeks ago, and it is boosting my energy. I've read it may help increase oxygen in the muscles, and that seems to be what it is doing for me. It's also supposed to help rebalance the immune system, from Th2 dominant to the proper state (see http://www.anapsid.org/cnd/diagnosis/cheneyis.html) I can only tolerate one a day - two gave me insomnia, but one is plenty for me.

So if someone is Th2 dominant as people with CFS/ME tend to be, we have a hard time with viruses and toxins and so Insoine might help you with your viruses. You can talk to your doctor about it.

Also, a few years ago I took something called Moducare, made from plant sterols and sterolins and it helped my immune system - I was getting sick less and recovering more quickly. I took it for about a year.

Anyways, I really like the Inosine and no bad side effects. But I know we are all so different with our manifestations of this illness. Also, and this may not be applicable to you, but I think the reason the Inosine is helping me with energy is because of branched chain amino acids and l-glutamine which I've been taking since last November. They have just about (or maybe completely, cannot tell yet) stopped my crashing. Unfortunately I've been hit by 2 different bugs in the last 6 weeks (sinus and digestive tract!), finally am recovering I think, and want to see how I do now.

Mainly I wanted to tell you about the inosine and hope you get some answers -

Mary

 

[Gingergrrl]

@Hip

I combined your last three posts together so I can ask you some questions and will hopefully be coherent even though I am really tired! I am sorry I did not get to respond to your prior PM but plan to as soon as I can!

Out of the 30 or so people I know who caught my virus as it spread around, there were three previously completely healthy people who suddenly had heart attacks within months of contracting my virus, and one died of their heart attack.

I did not read your blog yet but how did you determine that these 30 people got sick from you? I don't want to get too off track in this thread about Nitro but were you ill from a cluster outbreak?

A fourth person who caught my virus developed myocarditis and an associated heart attack around 10 years later. In this case, I am less sure that it was due to the same virus, but it is likely, because this virus seems to be able to stick around for many years in someone's body (causing chronic sore throats, chronic sinusitis, etc).

I feel like it would be close to impossible to determine if someone's heart attack ten years later was due to a virus that they caught from you and am saying this mostly in case you are carrying guilt about this which may not be your fault. Also, I was curious, you mentioned that the coxsackie virus in the people who had heart attacks also had chronic sore throats and sinus issues and I do not have either of these. I have actually never had a sinus infection in my entire life. Does this make it seem less likely that I have a similar enterovirus as the cause (or is this irrelevant?)

He was just told just to take it easy after his heart attack, which was relatively minor, and his ongoing myocarditis, but was given no specific medication, as far as I am aware.

So, even once they discovered that he had myocarditis, he was given no treatment? Did he have shortness of breath and angina leading up to it (or is this info unknown?)

I think my virus which spread to all these people is most likely a coxsackievirus B or an echovirus. Coxsackievirus B is linked to heart attacks, and is known to cause myocarditis. Here's an excerpt from a previous post:

I did not know that but if this is well documented then hopefully my cardio will know about it. When I see him next week, I am bringing the viral titer results from ARUP with coxsackie B4 virus at 1:160 to see what he thinks about it (which may be nothing in his opinion.) I am also going to tell him which cardiac tests my ME doctor has mentioned and tell him about my two times taking Nitro (one doing nothing and one greatly helping.) He is a smart guy overall and has been nice to me so hoping he will have some thoughts about these issues.

If someone has chronic myocarditis from an enterovirus, then possibly some antivirals might help.

Hip, sorry if you already answered this and I missed it but in your opinion could Valcyte help an enterovirus indirectly as an immune mod or anti-inflammatory?

I listed all the antivirals for coxsackievirus B and echovirus that I could find in this post. This includes antiviral drugs and herbs. Since you have coxsackievirus B4 and echovirus 11 by your ARUP Lab tests, you might look at some of the antivirals in that post which specifically target CVB4 and EV11.

Thank you and I will definitely look at the list later. My Echovirus 11 test went down to almost normal on the re-test and my doctor said that it is only one dilution away from normal which is enough to be a lab issue. But the Coxsackie B4 went way up to 1:160 (normal is 1:10) so this one is clearly active IMO.

Whether this will help reduce your symptoms, I really don't know.

I don't know either but will ask my doctor about them later. I am about to start Quercetin and Daosin for histamine issues (they should arrive tomorrow) and don't want to start too many new things at once. I don't know which scares me more right now- the cardiac stuff or the allergic reactions to these food dyes!

The only thing that seemed to significantly improve my ME/CFS symptoms was selenium.

This is very interesting and I currently take 100 mcg of Selenium every day for Hashimoto's Disease. From your thread, you take 400 mcg per day and I was wondering if this is still the case? If it can lower coxsackie B4 virus then I need to increase it. I also have been taking it with food but you said it needs to be taken on an empty stomach? Is this always true and is Selenium actually an anti-viral?!!! I was just taking it to lower my thyroid antibodies (which it actually has done so far.)

The nitroglycerin I bought is in a timed-release oral capsule form. I cannot remember why I bought capsules rather than sublingual, but I note that Goldstein specifies sublingual nitroglycerin for ME/CFS purposes.

The ones I have are sublingual 0.3 mg but do not remember how they compare to what Dr. Goldstein recommends. My cardio initially gave me a 0.4 mg spray but I was so afraid to try it b/c it seemed like you could spray different amounts based on how much pressure you used and Nitro can drop your BP and mine is already so low. So my ME doctor prescribed the sublingual so I will always know the exact dose and can start lower then the spray and I liked that idea better.

 

[Gingergrrl]

@Mary

@Gingergrrl[/USER] - first, I'm really glad the nitro helped you! I can't imagine dealing with what you do.

Thank you and it means a lot to have you and everyone say that. I can still remember when I could run on the treadmill at the gym so to be pushed around the grocery store in a wheelchair is very hard to grasp like it isn't really me.

Just wanted to throw in my two cents re Dr. Chia and treatment: I tested positive for Echovirus 6 and 9, and Coxsackie B3 and B4. He gave me equilibrant, and it did nothing for me, good or bad, I didn't react at all to it. He then told me to try Inosine. This was over a year ago and the Inosine didn't seem to do anything either.

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.)

However, I've recently restarted Inosine, maybe 3 weeks ago, and it is boosting my energy. I've read it may help increase oxygen in the muscles, and that seems to be what it is doing for me. It's also supposed to help rebalance the immune system, from Th2 dominant to the proper state (see http://www.anapsid.org/cnd/diagnosis/cheneyis.html) I can only tolerate one a day - two gave me insomnia, but one is plenty for me.

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.)

Also, a few years ago I took something called Moducare, made from plant sterols and sterolins and it helped my immune system - I was getting sick less and recovering more quickly. I took it for about a year.

I actually took Moducare for a long time from my former ND (at the time we only thought I had Hashimoto's) but it didn't do anything for me (good or bad) so we stopped it.

Also, and this may not be applicable to you, but I think the reason the Inosine is helping me with energy is because of branched chain amino acids and l-glutamine which I've been taking since last November.

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.

Mainly I wanted to tell you about the inosine and hope you get some answers -

Thank you and I appreciate it!

 

[Hip]

I did not read your blog yet but how did you determine that these 30 people got sick from you? I don't want to get too off track in this thread about Nitro but were you ill from a cluster outbreak?

It's a long story, but basically there were certain characteristic physical and mental symptoms that my virus produced in infected people which allowed me to work out who caught it.

I feel like it would be close to impossible to determine if someone's heart attack ten years later was due to a virus that they caught from you and am saying this mostly in case you are carrying guilt about this which may not be your fault. Also, I was curious, you mentioned that the coxsackie virus in the people who had heart attacks also had chronic sore throats and sinus issues and I do not have either of these. I have actually never had a sinus infection in my entire life. Does this make it seem less likely that I have a similar enterovirus as the cause (or is this irrelevant?)

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.

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

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.

So, even once they discovered that he had myocarditis, he was given no treatment? Did he have shortness of breath and angina leading up to it (or is this info unknown?)

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

I did not hear any reports of shortness of breath. Not sure about angina. I don't see this person very often.

Hip, sorry if you already answered this and I missed it but in your opinion could Valcyte help an enterovirus indirectly as an immune mod or anti-inflammatory?

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.

Now if Valcyte is an immunomodulator, conceivably its immunomodulatory action might work against enteroviruses too. But this is purely only my personal speculation; there are no studies I have seen that show Valcyte is useful for enterovirus infections.

This is very interesting and I currently take 100 mcg of Selenium every day for Hashimoto's Disease. From your thread, you take 400 mcg per day and I was wondering if this is still the case? If it can lower coxsackie B4 virus then I need to increase it. I also have been taking it with food but you said it needs to be taken on an empty stomach? Is this always true and is Selenium actually an anti-viral?!!! I was just taking it to lower my thyroid antibodies (which it actually has done so far.)

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.

Lower doses like 100 mcg don't seem to help me much at all.

Selenomethionine is nearly 100% absorbed in the gut (if taken on an empty stomach), whereas other forms of selenium like selenate are only 50% absorbed I think.

By the way, the yeast-derived selenomethionine I found causes me to be depressed, so I would say yeast-free selenomethionine is better.

 

[zzz]

I am still unclear if this proved it is autonomic/neuro based vs. micro-vascular angina, vs. virus in the heart, vs. histamine/MAST cell, vs. pure ME/CFS (cellular/mitochondrial issue) etc.

Yes, it can certainly get confusing with all these symptoms, many of which seem unrelated, and many of which would seem to require different treatments. So I think that this is a good time to bring in Occam's Razor to slash away a lot of this complexity. From Wikipedia:

Occam's razor (also written as Ockham's razor and in Latin lex parsimoniae, which means 'law of parsimony') is a problem-solving principle devised by William of Ockham (c. 1287–1347), who was an English Franciscan friar and scholastic philosopher and theologian. The principle states that among competing hypotheses that predict equally well, the one with the fewest assumptions should be selected. Other, more complicated solutions may ultimately prove to provide better predictions, but—in the absence of differences in predictive ability—the fewer assumptions that are made, the better.

Or as Albert Einstein so concisely put it, "A good theory should be as simple as possible, but no simpler."

We know that ME/CFS typically starts with a single trigger, and then a whole panoply of symptoms tends to erupt. Over time, new symptoms or comorbid illnesses tend to pile on as well. In the worst cases, dysfunction and infection can spread to many different bodily systems.

One can treat these symptoms individually, but it can be very difficult to get good results by this method in cases where there are so many of them. And if the various comorbid illnesses are treated without an awareness of their interrelationship, it is very hard indeed to make significant progress.

Yet ME/CFS has certain fundamental qualities present in everyone; that's why we consider it a single disease (though a multi-faceted one, to be sure), and that's why it's even possible to make a case definition, even though the definitive one may not exist yet. These two factors imply that there is some underlying disease process common in all of us, even though it never manifests exactly the same in any two people. But it would seem to reason that if we could address this underlying process, we should be able to treat the entire illness. And getting to the root of this illness would seem to be more effective than chopping away at the branches.

To get at the root of the illness, we need a good theoretical underpinning. There are certainly no shortage of theories out there, but this is where Occam's Razor can guide us. Is there a theory that can explain everything in one fell swoop? And if so, are there large-scale clinical results supporting it?

Those people who are familiar with my posts undoubtedly know what's coming next. Dr. Goldstein came up with what is in essence a very simple theory for what is going wrong in ME/CFS (although the details, like the disease itself, are quite complex). In his most recent article, published last year, he said, "I view CFS as a nitric oxide and glutamate disorder, affecting primarily the brain." This view is consistent with the theories of Dr. Paul Cheney, Dr. Rich van Konynenburg, and Dr. Martin Pall, among others. It is supported by Dr. Goldstein's experience with over 20,000 patients; in the later years of his career, he stated that he was able to get all but two or three percent of his patients asymptomatic, or nearly so, and and most of them in a matter of days. No one else has had similar success treating this illness, before or since.

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.

But does this explain all the effects of ME/CFS? Well, let me ask the question: Without a brain, how well does the rest of the human body function? And although we have a brain (although sometimes it doesn't feel like it), its functionality is reduced, sometimes severely. Not surprisingly, more and more evidence is tying the operation of the brain together with the operation of the immune system; a PubMed search will provide plenty of examples. And without a healthy immune system, infectious diseases can flourish. So can autoimmune diseases. And the Th1 => Th2 shift that occurs in the immune systems of many (if not most) people with ME/CFS is well documented; one of the results of this is increased allergic reactions, such as you have been experiencing, @Gingergrrl.

Now on one hand, when acute symptoms arise, such as increased allergic sensitivity, it's good to treat them directly, as the long term effects of more fundamental treatments may take a while to spread throughout the body. @Gingergrrl, this is why the decision of your doctor to treat your histamine problems aggressively makes complete sense.

However, for a full resolution of symptoms, the use of an agent that works directly on microglial inflammation appears to be the most effective approach. Valcyte seems to be the most effective drug found so far here, although as other have noted, there are many other drugs that act in this area as well. Valcyte is also a powerful immunomodulator. From Dr. Jose Montoya's conference call of 2/23/15 with Dr. Elizabeth Unger, who is the Branch Chief of the Chronic Viral Diseases Branch of the CDC:

Valgancyclovir – we discovered this drug has immunomodulatory abilities that were not known before our work at Stanford. These include a temporary but significant decrease in circulated monocytes and a shift towards a TH1 profile.

We believe that immunomodulation not only could partially explain the benefit of Valgancyclovir, but could easily turn out to be crucial in the treatment of ME/CFS. In fact, our cytokine data and that of others support this view.NK cell function: we’ll apply novel technology to the NK cell deficiency in ME/CFS shown by several groups

We believe suppressing herpes viruses may be an important component in what should be a holistic approach to treat ME/CFS patients

These immunomodulatory abilities are not merely theoretical, nor is the only basis for them observed differences in white cell counts. Back in 2001, I had figured out that this drug had immunomodulatory properties, and I used it to kick-start a nearly dead immune system. I later used it to get my immune system to get rid of non-herpes viral growths far more effectively that even a healthy immune system would. During this process, a large HPV wart I had had on my right index finger for over forty years disappeared completely, leaving healthy skin in its place. And Valcyte is known to have no effect on HPV viruses.

But Valcyte is not an immune activator - it didn't leave my immune system in a state of over-activation, and I didn't suffer any auto-immune effects. Instead, Valcyte is, as Dr. Montoya states, it is an immunomodulator, which in this case means that it just makes the immune system work properly. Or, in my case, better than properly.

Recently, some of us have found that low dose Valcyte can work far more effectively for far more people and with few or no negative side effects. This is a very new area and still being explored. Personally, I have found that a dose of 14 mg (1/32 of a tablet) per day works very well. I use it five days on and two days off; this is the same schedule used at the clinic where I initially got my ganciclovir infusions, and the pulsed dosing seems to maximize the immunomodulatory effects of Valcyte (avoiding the "temporary" aspect that Dr. Montoya mentions) while giving the body time off to help prevent any negative reactions.

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.

Meanwhile, although Valcyte certainly is an effective monotherapy for many people, its effects can be enhanced by various other drugs. Foremost among these is magnesium, whose effects are very complementary to those of Valcyte. Magnesium does have some microglial inhibiting properties, though these are far weaker than Valcyte's. Its most helpful effects come from the fact that it is the single most powerful NMDA antagonist. So whereas Valcyte inhibits glutamate release, magnesium calms down the NMDA receptors, which have typically been put into a hyperactive state from the release of too much glutamate. @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.

Within this framework, I think I can answer some other questions that were asked in a way that should make sense.

How does Isordil compare to a Nitroglycerin patch? The reason I ask is that my cardio said if the Nitro helps me, then he can prescribe me a patch (but wouldn't do this if I never tried the Nitro or if it didn't help me.)

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.

I know beyond a shadow of a doubt that my cardio will say that this is proof of micro-vascular angina (even though it did not work the first time I tried it.)

It doesn't really matter. 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.

However, magnesium is also extremely useful in enhancing mitochondrial function (among many other things), and since the half heart muscle is composed of mitochondria, this is an excellent treatment for your heart in other ways.

What do you mean exactly re: the neuro effects of nitrates? Is there a page in the Goldstein book that I can read on this to try to understand it better? I always feel so dumb asking these basic questions.

The neurological effect of nitrates simply means that these drugs can help your brain work better, and relieve many if not sometimes all of your ME/CFS symptoms. Although Dr. Goldstein discusses nitroglycerin extensively in Betrayal by the Brain (you can look in the index to see where), I don't think that reading this will help you understand the process any better. Much of the mechanism of action of nitroglycerin in ME/CFS, like much of the action of virtually all of Dr. Goldstein's drugs, is unknown.

There is the question of why nitroglycerin initially had no effect for you, and now it does. Like me, you appear to be one of the fortunate people who responds to this drug. But your recent traumas may have caused so much inflammation that the neural network switching that nitroglycerin causes in susceptible people simply could not happen. 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. As you have seen, low dose Valcyte can often have positive effects in a matter of days, versus the months it often takes Valcyte to work at a standard dose. The reason for this appears to be that at a low dose, Valcyte's negative, inflammatory effects are negligible, while its beneficial effects seem to be undiminished. In other words, Valcyte's beneficial effects seem to top out around the dose you are taking. This has been observed in a number of people so far.

@zzz will know much more about this than me but I was under the impression that Goldstein used nitro on his patients for ME/CFS in general not just when they were having an attack of angina.

This is true. As Dr. Goldstein used nitroglycerin purely for its neurological effects, and as these could encompass all ME/CFS symptoms, whether or not someone was suffering from angina was not a criterion for his use of this drug.

@zzz do you know if oral timed-release capsules would work similarly to sublingual nitroglycerin for ME/CFS purposes?

It would certainly make sense that they would, but not having seen evidence of this, I can't say for sure. However, the effectiveness of nitroglycerin patches for this purpose certainly does seem to imply that timed-release capsules would work.

@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.

To summarize, @Gingergrrl, I think that the two primary treatments that you are doing - Valcyte and magnesium - have the potential to address all your problems. I find it quite interesting that if you read the thread Jennifer brea- does anyone know what treatments she is doing?, you find that two of her main treatments are Valcyte and magnesium. And now nitroglycerin appears to be helpful for you as well. I think that there are other treatments of Dr. Goldstein's that would also speed up your recovery process; we can talk about this privately if you like.

I should also add a disclaimer here. Although I think that this post has wide applicability, it is directed primarily to @Gingergrrl and her particular circumstances. Low dose Valcyte and magnesium are not guaranteed to work for everyone. And even in those for whom these drugs work, optimal dosing may be different from what @Gingergrrl is using. Much more research is needed in this whole area.

 

[Sidereal]

@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.

Totally agree. We have to ask ourselves why only some people end up with these chronic non-cytolytic enteroviral infections. I would imagine we need to restore proper functioning of the immune system. If not, even if a perfect antiviral existed that could get rid of this infection, the next enterovirus we're exposed to would just get us all over again.

 

[deleder2k]

I am going to be trying nitroglycerin myself soon. I bought some online (30 x 2.5 mg sustained release capsules), and it's just siting here on my shelf, waiting for me to try it, which I will do soon. I don't fancy the headache side effect that can occur with nitroglycerin though; but I read here that anti-inflammatories like aspirin can help:

This applies to isosorbide mononitrate, but I imagine it should work for nitroglycerin too.

I might take some acetaminophen (paracetamol) an hour before I take the nitroglycerin, as a possible headache preventative.

Where did you buy it? Don't you need a prescription?

https://data.epo.org/publication-server/pdf-document/EP13168487NWA1.pdf?PN=EP2805730 EP 2805730&iDocId=7868378&iepatch=.pdf


wow look at this! Patent by Fluge and Mella from Haukeland

I'll create a thread about it