The Chickenpox & Shingles Poll

[heapsreal]

When the VZV is just dormant in the nervous system, you generally shouldn't get a positive IgM for it. A positive IgM generally means you do have an active infection, although if you've had chickenpox, you may even have an active VZV infection (such as shingles) without an elevated IgM. What @heapsreal said is also true, but your result also has to be interpreted in the context of your EBV infection. Cross reactions on the various herpes tests are known to occur, so your high VZV IgM may simply be reflecting your EBV infection. The standard ELISA test is susceptible to these cross reactions, while the newer, glycoprotein-based tests are more specific, and much less susceptible to cross reactions. Do you know which type of test you had?

In any case, VZV is treatable by Famvir, just like EBV. And like other herpes viruses, it should also respond to Zantac.

I think famvir should be put in the drinking water for us??

 

[NK17]

Its possible to get internal shingles so no outwards signs that normally present like the typical shingles rash. This i found on a quick google but u can find more http://www.buzzle.com/articles/internal-shingles-symptoms.html .

This is exactly what I started to think when I was on a high dose of Famvir for 9 months, I noticed the disappearance of some internal symptoms.

@heapsreal I have some expired (Feb '14) leftover Famvir, what shall I do with it? Do you think it's still good?

 

[NK17]

@zzz I'm intrigued by the Zantac antiviral activity.
Is it anecdotal or are there any clinical studies?
I'd love to learn more about it.

 

[Gingergrrl]

@heapsreal and @zzz Thanks for all the helpful info! I don't seem to have the symptoms of internal shingles and am wondering if the positive IgM was a cross reaction with the EBV like you mentioned? I am not sure what kind of test was run for the VZV and would have to dig out all my material. Since Famvir would treat the VZV, too, then I am okay in either scenario!

 

[Sea]

I've had chicken pox twice. I had measles twice too. I think it does indicate an immune system with some problems even as a child.

 

[zzz]

@heapsreal I have some expired (Feb '14) leftover Famvir, what shall I do with it? Do you think it's still good?

The one class of drugs that you really have to worry about in terms of expiration dates is the tetracycline antibiotics. Specifically, doxycycline turns toxic after it expires.

For just about everything else, the only thing that happens to expired drugs is that they slowly lose their potency after time. But this process is very slow, and there's nothing magic about the expiration date; taking the medicine the day after this date is no different from taking it the day before, as you would expect.

What the expiration date means is that the drug manufacturer has tested the drug for potency for a specific shelf life, and that shelf life is reflected in the expiration date. Obviously, the drug company saves money if it doesn't have to test for longer shelf lives. And in fact, if people throw out expired drugs and buy new ones, it's actually more profitable for the drug companies to keep the expiration dates as short as possible. Doesn't it seem a bit strange that absolutely all drugs expire within a couple of years or so?

A number of years ago, the Wall Street Journal did an investigation of this issue. It found that the vast majority of drugs were perfectly good after many times their advertised shelf life had passed. Some of these drugs had a very slight loss in potency, but nothing that would affect their clinical use. It concluded that expiration dates were set the way they were mainly for the benefit of the drug companies.

As a rule of thumb, if the exact dose of a medication isn't important, such as for a painkiller, then it's OK to keep them for many years, as the WSJ found. For example, I have kept some opiates for over ten years, and found no detectable difference in their potency from fresh ones. I recently did an experiment with some Isordil, which is like nitroglycerin except longer acting, and which you would expect to be quite volatile, and therefore useless after a few years. Nitroglycerin-type drugs are known to be very effective against CFS in many people, and I am one of them. One recent morning, I was having a lot of trouble with all my symptoms, and didn't have the energy to stay sitting up. I took 10 mg of some Isordil that was 25 years old. Sure enough, within a couple of minutes, I started feeling better, and I could tell the difference minute by minute. After five minutes, I felt fine. This is one of the best responses I've ever had to Isordil. Of course I had that standard nitrate headache, but that's a headache I've learned to love, as it means that the drug is working, and I feel better in every other respect. Unfortunately, nitroglycerin (and Isordil) are very unpredictable, and tolerance, temporary or permanent, can develop after even one dose in the treatment of ME/CFS. But when these drugs work, they're great.

For antibiotics and antivirals, it's good to be more conservative, as it's usually important to get the full dose, and we don't know at what rate the potency of these drugs decays. However, the manufacturer is always very conservative about setting the expiration date. It has to be, due to the differences in the way different batches are made, shipped, stored etc. So it's always safe to take something a few months after it has expired (with the above noted exception). After that, then it partially depends on financial matters. If you can easily afford a new dose, then go ahead. Otherwise, you can start an older dose, and if it's not as effective as it should be (which has never happened to me), you can switch to a new prescription. Just make sure there's no gap between the old and the new. The equivalent of this is actually often done in standard practice, where a standard dose of an antibiotic may be given, and if the response is not satisfactory, the dose is raised.

It's always important to examine the drugs you use, especially if they're older. If they have turned color, started to crumble, or changed in any other way that is not expected, you should throw them out, regardless of their expiration date.

It's also important that you follow the instructions about storage closely. Most medicines say that they should be stored in a cool, dry place. This leaves out the bathroom and its medicine cabinet, as showers and baths are not exactly dry, and tend to heat up the room. Refrigeration or freezing is best, but only if the medicine explicitly says it's permitted (which is rare). Otherwise, the cold may damage the drug. All drugs have storage temperature instructions; if they don't come with your prescription (which they should) or you no longer have them, you can find them on the Web.

@zzz I'm intrigued by the Zantac antiviral activity.
Is it anecdotal or are there any clinical studies?
I'd love to learn more about it.

Here's a quote from another post where I answer the main part of that question:

In 1979, Dr. Jay Goldstein discovered that he could cure acute mononucleosis infections in 90% of his patients in one to two days by using Tagamet. The theory behind this can be found on page 196 of Chronic Fatigue Syndrome Treatment: A Treatment Guide (well worth the $4 if you don't already have this book). You can also find this page online here. Tagamet is also helpful in reducing ME/CFS symptoms in general for 20% of the people who take it (sometimes by quite a bit); you may be more likely than most people to benefit from it since your CFS seems to be connected with your EBV.

Despite the fact that Dr. Goldstein published a paper on this, and the results were duplicated elsewhere, this still has not been adopted as a standard treatment for mononucleosis, so your doctor may not be familiar with it. However, it is quite effective; people with refractive mononucleosis used to travel long distances just to have Dr. Goldstein give them Tagamet. It was available only by prescription back then; now, you can get it over-the-counter at any drugstore, and cheap generic forms (cimetidine) are available. Tagamet is effective against all herpes viruses. From Life Extension Magazine:

While pharmaceutical companies promote expensive and only partially effective anti-viral drugs, there is evidence dating back more than 20 years that the drug cimetidine (sold over-the-counter as Tagamet) is highly effective in shortening the duration or preventing the outbreaks of herpes and shingles. The problem is that virtually no physicians are prescribing cimetidine to their herpes (or shingles) patients, despite persuasive findings in peer-reviewed scientific journals.

There's also a thread about Tagamet and ME/CFS right here on PR.

Zantac (ranitidine) works similarly to Tagamet; both are H(2) antagonists. Zantac has the advantage that it has fewer side effects than Tagamet.

Dr. Goldstein later switched to using Zantac on his patients for this reason. (Zantac hadn't been released in 1979.)

From later in that post:

Be prepared for the likelihood that your doctor has never heard of this. As Dr. Goldstein says on page 313 of tuning the Brain:

As a probably predictable aside, I should mention no one evinced the slightest curiosity about how these results [the rapid termination of LSD effects using niacin] were accomplished, and this "antidote" remains little known thirty years later, much like my discovery in 1979 that cimetidine made acute infectious mononucleosis in teenagers or adults (and varicella, too) resolve in one or two days. I am getting tired of whining about it, but hardly anyone is aware of this treatment, even now [in 2004, 25 years after its discovery]. Although I reported a 90 percent cure rate in over 100 patients (rather high for a placebo response), the results were "anecdotal". Naturally, I was unable to get a grant to perform a double-blind, placebo-controlled experiment. "But Tagamet (and later Zantac) is for ulcers," the reviewers would write. The fact that the chairman of the department of infectious diseases at the local medical school was my coinvestigator on the grant proposal did not grease the wheel at all.

So to this day, the results are considered "anecdotal", even though Dr. Goldstein continued to use Zantac (ranitidine) successfully until his retirement seven years later.

Think about it: Why should the drug companies (who fund most drug studies) fund an expensive study to see if Zantac, which is now an inexpensive OTC drug (especially when bought in its generic form) works as well as the expensive antivirals? Think of all the money they would lose if people switched from the expensive antivirals to Zantac! And you have to take the antivirals for a long time, whereas Zantac gets rid of all symptoms in one or two days when it works.

Dr. Goldstein found that Zantac could also improve all symptoms in about 20% of ME/CFS patients. You can see this post for further details. There is more discussion about Zantac in the rest of that thread.

@heapsreal and @zzz Thanks for all the helpful info! I don't seem to have the symptoms of internal shingles and am wondering if the positive IgM was a cross reaction with the EBV like you mentioned? I am not sure what kind of test was run for the VZV and would have to dig out all my material. Since Famvir would treat the VZV, too, then I am okay in either scenario!

I would certainly think so. And based on your history and symptoms, I think that it's unlikely that you have an active VZV infection.

I've had chicken pox twice. I had measles twice too. I think it does indicate an immune system with some problems even as a child.

Having chickenpox twice is quite rare (although you're the second example in this thread!) and it seems to always indicate a weak immune system (which is why we have multiple examples in this thread). Having measles twice is yet more evidence of that. Specifically, it sounds like you may have been having problems with your memory B cells; malfunctioning B cells have now been associated with ME/CFS, such as in the rituximab trials.

 

[heapsreal]

This is exactly what I started to think when I was on a high dose of Famvir for 9 months, I noticed the disappearance of some internal symptoms.

@heapsreal I have some expired (Feb '14) leftover Famvir, what shall I do with it? Do you think it's still good?

Im not sure, amny medicines are good 2 yrs after expiry date but some can be dangerous past expiry date like doxycycline. Give it a google?? Otherwise online source?

 

[zzz]

Im not sure, amny medicines are good 2 yrs after expiry date but some can be dangerous past expiry date like doxycycline. Give it a google?? Otherwise online source?

When I Googled "drug expiration danger", the first thing that came up was this excellent article from the Family Health Guide of the Harvard Medical School. One sample quote that shows the tone of the article:

Most of what is known about drug expiration dates comes from a study conducted by the Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date.

I'd highly recommend reading the whole article.

 

[heapsreal]

When I Googled "drug expiration danger", the first thing that came up was this excellent article from the Family Health Guide of the Harvard Medical school. One sample quote that shows the tone of the article:


I'd highly recommend reading the whole article.

i remember at work medications that had expired were kept and sent over to third world countries and the 2 years past expiry date was mentioned. 15yrs though is interesting.

 

[PNR2008]

@zzz In 1992 Dr. Goldstein put me on Zantac and had to immediately reduce the amount to half because I was so energized, I felt like walking on the ceiling. I don't know why I stopped taking it, probably because nobody here would prescribe it as with most of his protocol. When it was OTC I'd take it if I had something important to do and my energy was low. I never thought of it as an antiviral but will read up on that. Dr Driscol the EDS advocate uses Zantac also. Very interesting.

I've had chickenpox at about 7 or 8 years old and a mild case of shingles around my eye at about 59 which was the only time I took antivirals. Could Zantac be the wonder drug nobody wants us to know about?

 

[zzz]

@zzz In 1992 Dr. Goldstein put me on Zantac and had to immediately reduce the amount to half because I was so energized, I felt like walking on the ceiling. I don't know why I stopped taking it, probably because nobody here would prescribe it as with most of his protocol. When it was OTC I'd take it if I had something important to do and my energy was low. I never thought of it as an antiviral but will read up on that. Dr Driscol the EDS advocate uses Zantac also. Very interesting.

Based on your response to Zantac and what Dr. Goldstein has published, it would seem to make sense for you to try the dosage he prescribed for you and take it on a regular basis. Based on what Dr. Goldstein wrote, it could very well have a major positive effect on your ME/CFS symptoms.

Could Zantac be the wonder drug nobody wants us to know about?

I think that it's one of them.

As far as I can tell, no one has been actively trying to suppress the knowledge of Zantac. It's just what Dr. Goldstein said: Everyone knows it's for ulcers, and besides, no formal clinical trials have been done. Of course, those trials take a lot of money. The end result is that people use expensive antivirals for long periods of time instead of Zantac, which is just fine with the drug companies. They don't even have to do anything.

 

[MeSci]

I had bad chickenpox at age 5. In the same year (soon after?) I developed Bell's Palsy, strongly suggesting that the virus had got into my nervous system.

No shingles.

 

[Hip]

A more interesting poll question might have been: "Did you have a shingles outbreak soon after you caught the respiratory virus that triggered your ME/CFS?"

Dr John Chia said that a shingles outbreak is not uncommon when you first catch an enterovirus. Enteroviruses (such as coxsackievirus B) are strongly linked to ME/CFS. Enteroviruses can cause immune suppression, particularly a reduction in CD8 cells, during the first few months of infection, which can allow other viruses such as varicella zoster virus (the shingles/chickenpox virus) that are dormant in your body to reactivate.

In this way, catching an enterovirus infection can lead to a shingles outbreak.

To quote Dr Chia on enterovirus-induced shingles outbreaks:

We have seen clusters of shingles occurring. ... Shingles is the reactivation of the chickenpox virus. The Epstein-Barr virus, or herpes six virus, once reactivated, are hard to see. You will have to think about it, you have to do tests to confirm it. But chicken pox, showing up as shingles, you know the virus is reactivated.

So I thought this may be a good area to look at it, because I knew a number of these patients who had a prior respiratory or gastrointestinal infection. So what we found, when we investigated five cases is that the T8, or the CD8 positive lymphocyte counts dropped dramatically. So did the CD4 count, but much less so. This the total reverse of HIV. And this is totally different to Epstein-Barr virus. You can actually tell by looking at this.

So it was very interesting that the T8 cells drop profoundly, but in two months or so, when we repeated it, it came back to normal. This is comparing with . . by the CD4, CD8 cells of my chronic fatigue patient. You can see there's a big difference. Recurrence shingles, in most of the patients are independent of subsequent CD8 count. But a couple a patients, they had very low CD count. CD8 . . . T-lymphocyte cells. They have recurrent shingles. We have to keep them on acyclovir. We couldn't even stop it. Whenever we stopped the shingles would come back.

Source: Invest in ME London 2010 ME/CFS Conference DVD

There is also a paper published by Dr Chia on enterovirus-induced varicella zoster virus reactivation:

Varicella-zoster virus reactivation during acute enterovirus infection is associated with CD8 lymphocytopenia

This study found that in the first two months after catching an enterovirus, CD8 cell counts can drop well below the normal range (down to around 100 per mm3, when the normal range is 150 to around 800), and there can sometimes also be significant decreases in CD3 and CD4 cell counts during these first two months.

Note that this enterovirus-induced immune suppression only lasts a few months before returning back to normal.

 

[Gingergrrl]

I didn't re-read this whole thread but am currently taking Zantac 2x/day to try to reduce my active EBV and VZV count. It is helping my stomach in the process but not noticing any improvement in energy.

I had chickenpox at age 11 but even with current high IgM for VZV, I have never had shingles!

 

[Little Bluestem]

I cannot recall if I had chicken pox.

 

[Sushi]

Ooh! I just got shingles--popped up out of no where. Happened to look in the mirror later in the day and there it was (hadn't been there a few hours earlier). And, it was the 4th of July weekend--thank goodness for Urgent Care who confirmed it the next day. The first night I took a big dose of Lysine and some oregano oil (in a capsule with olive oil). It was less "angry" the next day but the doc took one look, asked questions and said, "Yep, shingles."

Because ME/CFS patients practically have a pharmacy stashed at home, I happened to have an unopened bottle of Valtrex and he said to take it. It is working, but now I remember why it was unopened--it was a refill and when I had told my doc that I felt like crap on it, he said to stop taking it. So...now I feel lousy again, but I was told that if the rash was gone after a week, I could stop taking it. I am continuing with the Lysine and oregano. How long have others taken antivirals for shingles? I am a bit afraid to throw Zantac into the pot.

And yes, I had chicken pox when I was about 5.

 

[BadBadBear]

Glad you caught it early enough to be treated, Sushi!

I already posted, but recently had found out that my brother had shingles at 24 and my sister had shingles around age 35 (I was raised apart from them, so didn't know until now). There seems to be a familial link for us getting shingles at a youngish age for it. I am the only CFS'er, but I am the oldest and had the most disordered childhood. Hoping none of my younger sibs get it.

 

[*GG*]

Wonder if we do/do NOT get shingles at a younger age? My brother, 1 year older than me, got shingles about 2 years ago at age 46 ish.

Still no shingles for me, heard it is really bad, perhaps worth trying the Vaccine for it?

GG

 

[daisybell]

@Sushi - I hope it clears up quickly.....

 

[zzz]

Sorry to hear about your shingles, @Sushi. I first got shingles at age 38, and then one or more additional episodes around age 46, when I got my final ME/CFS relapse.

What I do know is that the most important thing in avoiding post-herpetic neuralgia (which is a real pain and literally can go on for years) is to get antiviral treatment as soon as possible, which you have done. Valtrex certainly fits the bill here. It's too bad that you're reacting to it, but as you've gathered, a week is generally plenty of time to take it, even if the shingles symptoms aren't completely gone by then.

I am a bit afraid to throw Zantac into the pot.

This is a matter of personal choice, of course, but Zantac is a rather benign medication with few side effects, and most people don't experience any of them. (This includes me, and I react badly to most drugs.) One reason for its lack of side effects is that it doesn't cross the blood brain barrier. Many people find that Tagamet (cimetidine) is more effective against herpes infections, but it crosses the blood brain barrier, and consequently has greater side effects. I tried it once and had a negative reaction to it and had to stop it, but the reaction to it dissipated within hours.

In any case, Valtrex seems to be a good route to go if you can bear with it for a week. If you're up for trying Zantac or Tagamet in addition, you may be able to cut down this period significantly.