One month into Valtrex, starting out on Valcyte

[RUkiddingME]

That's not what my doctor led me to believe. Dr Lerner's writes in his protocol that an initial worsening of symptoms is to be expected before improvement. This sounds like a die-off reaction. Why do you think this happens? I don't think it's simply adjusting to the medication. I haven't noticed too many side effects from the valaciclovir. I'm not terribly familiar with antivirals but the allergy type symptoms for me are a sign of herxing. I'm also taking olmesartan so I will continue to get some herx response.

Everyone is different in the way they respond to anti-virals. I didn't feel any worsening on Valtrex or Famvir but with the Valcyte which is a much more serious drug I felt no different the first month and then month two and three there was a big worsening of my symptoms. At the four month mark I started feeling better. I initially was on Valcyte for 15 months. I was off for 2.5 months and my doctor decided to put me back on for another six months. To my surprise I had to go through the same process again of months two and three being very crappy and then improvement. Unfortunately Valcyte doesn't work for everyone. Let's hope you are a responder! ))

 

[SOC]

That's not what my doctor led me to believe. Dr Lerner's writes in his protocol that an initial worsening of symptoms is to be expected before improvement.

There are many types of side effects from taking medications. Not all are herx reactions, and not all are normal.

I agree that there is often a temporary worsening of symptoms, particularly with Valcyte. I had a very bad stretch with Valcyte that didn't start until 4 months into treatment. Mine appeared to be an IRIS-type reaction. However, an IRIS reaction doesn't happen immediately upon taking a medication, as yours appears to have done.

This sounds like a die-off reaction.

That's not possible with valacyclovir and valgancyclovir. The symptoms you are having are not caused exclusively by "die-off". The body and the medicines we put in it are an extremely complex system. There are any number of reasons one might have allergic-type reactions. One is that you are having an allergic reaction to the medication, which should be checked with your prescribing doctor. Another is that you are having an allergic reaction to something entirely unrelated to the medication. There are plenty of other reasons as well.

Why do you think this happens?

Impossible to say. It could be any of very many things. This is something you should discuss with your physician.

I don't think it's simply adjusting to the medication.

Why? That would be the most likely explanation.

I haven't noticed too many side effects from the valaciclovir. I'm not terribly familiar with antivirals but the allergy type symptoms for me are a sign of herxing. I'm also taking olmesartan so I will continue to get some herx response.

Valacyclovir is a relatively "easy" medication. Most patients don't have side effects from it, although I'm sure some do. Valgancyclovir is another story. Many people have side effects of some kind from it.

Allergy-type symptoms are commonly (but not exclusively) the result of some kind of immune response, but without testing you're not likely to know exactly what kind of immune response or what is causing it. "Herxing" is a much overused, and usually incorrectly used , explanation for immune reactions. It is relatively rare and can only occur in very specific situations, and taking antivirals is not one of them.

From Dr Lerner's writings, I understand the main risks are kidney and liver function problems. He has said valaciclovir is safe to use, although he exercises more caution with valganciclovir. But so long as liver and kidney values don't indicate any problems, I believe they are safe. I've read some information about antivirals affecting white blood cell count and mitochondria production, but I haven't come across this in Dr Lerner's writings yet (I still have a lot of reading to do).

One of the most serious side effects of valgancyclovir is neutropenia. Dr Lerner is very well aware of this and tests for it and liver function every 4-6 weeks. I agree that if you are being tested often enough for potential side effects, valgancyclovir is relatively safe. I wouldn't have allowed my teenager to take it if I didn't believe that. That doesn't make it a medication without risk, just one where the risks can be managed with very careful management and supervision.

Since you seem to be a fan of Dr Lerner, I will share some insights from having been a patient of his. He does not consider Valcyte (valgancyclovir) a "safe" medication. He is very well aware of the risks and is extremely strict about monitoring for them. He will immediately take a patient off Valcyte if side effects develop. He will only prescribe 4-6 weeks at a time to make sure that patients come in to get regular blood tests. No tests, no Valcyte. He believes Valcyte is a valuable medication in ME/CFS treatment and that it can be used safely with careful management and knowledgeable supervision. He does not take it lightly, or prescribe it indiscriminately.

Dr Lerner does not believe, at all, that the difficult period some people have with Valcyte is a herx reaction. He would chide you if you told him it was. He acknowledges the situation, but to my knowledge has never tried to explain it. He is an infectious disease doctor, not an immunologist.

 

[heapsreal]

Pre valcyte my neutrophils would bounce between low normal and mild neutropenia. At the start of valcyte i got a sinus infection which i still can't get rid of which i believe is from neutropenia. My neutrophil numbers stayed the same for quite a while then i had a test come back at moderate neutropenia and 3 months later another moderate neutropenia lower than the previous test. This was when i stopped valcyte. Off valcyte 12 months almost and my last test 3 months ago still showed moderate neutropenia and still ongoing Sinusitis. Valcyte did help viral symptoms. I still remain on famvir.

 

[Matt_C]

Ok, i'll stop calling it herx. Thanks for your input. I looked up what an IRIS response is on Wiki and it sounds a lot like what I understand herx to be: "Immune reconstitution inflammatory syndrome (IRIS) (also known as immune recovery syndrome[1]) is a condition seen in some cases of AIDS or immunosuppression, in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse.[2]"

But as you say, my symptoms could be from any number of things. I'll be careful to get my bloodwork checked regularly. How often would you recommend getting it done? I haven't read this anywhere, other than it is to be done regularly.

 

[SOC]

How often would you recommend getting it done? I haven't read this anywhere, other than it is to be done regularly.

Dr Lerner tests every 4-6 weeks. I've heard of other doctors testing monthly. My current doc tests monthly for the first few months. If the patient has no changes in bloodwork during that time, the later tests are done every 3 months. I believe the thinking is that patients who are going to have rapid poor response (increase in liver enzymes or neutropenia) will show some signs of that in the first few months and get tested more frequently. The rest are monitored less frequently for slowly developing problems. If I was on valgancyclovir for the first time, I'd want to be tested no less often than once every 2 months throughout the treatment course.

 

[Valentijn]

@Matt_C - A herxheimer has a very different cause. When spirochetes die off, they release endotoxins. The endotoxins cause the reaction ... fever, hypotension, etc. Herxing is a response to the specific toxins, not to the infection itself.

IRIS is also a lot more severe and somewhat longer lasting.

 

[Matt_C]

I've been reading quite a few other posts on this site who call reactions they experience from antivirals die off, and no one has corrected them in their posts!

 

[Matt_C]

Dr Lerner does not believe, at all, that the difficult period some people have with Valcyte is a herx reaction. He would chide you if you told him it was. He acknowledges the situation, but to my knowledge has never tried to explain it. He is an infectious disease doctor, not an immunologist.

"An initial worsening of symptoms with normal laboratory at a two-week special visit with worsening symptoms is a Jarisch Herxheimer reaction and predicts a good response. Initial benefit is usually not noted for the first six weeks’ of therapy and then occurs thereafter. A minimum period of therapy is one year. Usually benefit is not opparent until after 3.5 months of therapy." A. Martin Lerner, Page 9 (http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf).

So it seems Dr Lerner does, in fact, believe that the initial worsening of symptoms is herx. Why am I being lambasted here with misinformation?

 

[Matt_C]

I'm very experienced in identifying my own signs of herx, which has been called immunopathology for the last five years or so by the people behind the Marshall Protocol. The Marshall Protocol induces recovery from various autoimmune-type illnesses via immunopathology and I achieved significant recovery from various debilitating symptoms on it, through a whole lot of herxing over 6 years.

Most of the reactions i've been experiencing on the antivirals are most definitely herx. And that leads me to believe that EBV is a big player in my symptoms and I should do well on valaciclovir alone (I haven't had my titers tested yet but will do so in the next week). But I also have positive IgG for HHV-6 so i'm very much looking forward to adding the valganciclovir as soon as it arrives. It should be here in the next two weeks. I'm also planning to introduce supplements to help my liver and kidneys and have read some informative posts on these forums.

I have a feeling i'm going to do very well on antivirals .

 

[Valentijn]

"An initial worsening of symptoms with normal laboratory at a two-week special visit with worsening symptoms is a Jarisch Herxheimer reaction and predicts a good response. Initial benefit is usually not noted for the first six weeks’ of therapy and then occurs thereafter. A minimum period of therapy is one year. Usually benefit is not opparent until after 3.5 months of therapy."

So it seems Dr Lerner does, in fact, believe that the initial worsening of symptoms is herx. Why am I being lambasted here with misinformation?

He's wrong too. A herxheimer reaction is very narrowly defined. No endotoxins, no herxheimer.

 

[Matt_C]

He's wrong too. A herxheimer reaction is very narrowly defined. No endotoxins, no herxheimer.

You are disagreeing with some very highly qualified people here in Dr Lerner and Professor Marshall. What are your qualifications?

Regardless, we will have to agree to disagree, Professor Marshall has a broader understanding of herx/immunopathology and that's the one I will adopt.

 

[minkeygirl]

My understanding, which is limited, is herxing is from bacteria die off. I won't question @Valentijn because she's pretty smart @Matt_C . If you go back through here and read her posts you'll see she is well respected here, and smart doctors can still be wrong. If you look around there are people here who have real problems with Lerner lately.

Plenty of people here refer to it as herx because they don't know any different and some people just let it slide because we understand the gist of what they are saying. You feel like crap while trying to stop the viruses from multiplying.

 

[Matt_C]

Well, to be honest and with all due respect, I don't want my thread cluttered with all this debate about whether or not what i'm experiencing is herx. And if people are going to make comments like @Valentijn they ought to show some evidence or back up what they're saying when they disagree with the experts who have helped me make an informed choice about my medical treatment. Dr Lerner has decades of experience treating chronic viral infections so I'm just going to go by what the experts are calling it, ok? If anyone has any evidence that Dr Lerner is no longer calling it herx, please share some links. But if it's just opinion, perhaps start another thread for this discussion?

 

[Valentijn]

Well, to be honest and with all due respect, I don't want my thread cluttered with all this debate about whether or not what i'm experiencing is herx. And if people are going to make comments like @Valentijn they ought to show some evidence or back up what they're saying when they disagree with the experts who have helped me make an informed choice about my medical treatment.

The Jarisch-Herxheimer reaction was defined by two doctors (Jarisch and Herxheimer) over a century ago. They observed the reaction in response to syphilis dying off from various means - it was not restricted to antibiotics or any other specific drug. It was eventually discovered that it was the release of endotoxins from dying syhpilis spirochetes which caused the reaction. It was also eventually observed that the death of other endotoxin-releasing spirochetes, such as borrelia (Lyme) causes the same effects.

Viruses aren't being killed by anti-virals, and they don't produce endotoxins. Hence it is a different reaction occurring, with a different cause. The symptoms may be similar, but that doesn't mean that they could be the result of "herxing" or "die-off". It's something else.

Using the wrong terminology can cause a lot of problems. First of all, if you tell a doctor with an attitude problem that you are "herxing" due to anti-viral medications, you will lose all credibility and be treated poorly. It shouldn't matter - after all, the patient is describing things as best they can, using an approximate if incorrect term. Yet that sort of mistake often results in the doctor immediately shutting down and ignoring everything you have to say. It's better not to give them an excuse.

Additionally, dismissing unpleasant symptoms as a herxheimer reaction in every situation under the sun can result in patients "pushing through" allergic or other adverse reactions. The "herxheimer" label is used to explain that "it's good that this treatment makes you feel like crap - that means it must be working!" In Syphilis and Lyme that is known to be the case, so long as the reaction conforms rather strictly to the narrow definition of a Herxheimer reaction. Applying the same logic to a wide range of pathogens, medications, and symptoms, in the absence of any scientific support, is dangerous.

I would suggest that the doctors mentioned above are using an approximate terminology which their patients are familiar with, to explain that their patients often feel worse for a bit before making progress. But it is still the incorrect term, and negative symptoms should be closely monitored and examined outside of the "herxheimer" free pass which allows them to be automatically labeled as a good thing.

 

[Matt_C]

The term Herx covered the reaction best but as you Valentijn and SOC have so emphatically pointed out, herx has a very narrow definition. But there is something going on with the antivirals that is not herx and that is not side effects, and that is doing us good. I and others call that immunopathology.

While antivirals don't attack viruses, and I have always understood that they prevent the virus from replicating rather than kill them, clearly Dr Lerner believes this initial symptom worsening is due to an immune system reaction that is caused by taking the antivirals rather than side effects. And given most people's experience on antivirals and the way symptoms worsen and then the patient gets noticeably better, immunopathology is what is occurring. How to differentiate this from side effects? I think each of us knows the difference. For me, so long as my liver and kidney function is good, and neutropenia isn't a risk, i'll know my symptoms are from immunopathology.

I am under good medical care and am not doing this protocol blindly. The main reason i'm posting here is to track my progress and to keep a public record of my progress that may be useful to others.

 

[heapsreal]

I guess the main point is that many at some stage on valcyte will feel like crap, that's probably the best medical terminology to use. Let's just hope the crap doesn't last long and u start seeing good results.

I remember reading that some didn't feel better until they stopped valcyte. For me I felt like crap straight off the bat, stopped and started a few times because I felt so bad. Eventually I started it and tolerated it and slowly improved.

I was scared as when it came time to stop. I have had a few small crashes but have been able to manage things with famvir quite well so far. Although coming out of a recent crash after being off famvir for more than 4weeks and feeling quite good.

I seem to respond quite quickly to antivirals now after being on them for so long. At a guess, maybe viral load is low so doesn't take much to turn things around after being off for short periods compared to when I first used avs.

Hopefully ones immune system starts up properly after avs do their job but if it doesn't than one needs to look at ways of increasing immune function and ongoing avs, but less toxic than valcyte? ?

 

[Matt_C]

That seems to be the key, having a strong immune system to keep things in check once the viral load is down. I'm hopeful i've done enough to strengthen my immune system that this last stretch to recovery on the antivirals will be relatively smooth sailing. I used to have a lot of problems with bronchitis as a child and am wondering whether that will come up as an IRIS response. I hope it's not too severe if it does!

 

[Matt_C]

I read about another chap who had a long-standing problem with insomnia who wasn't able to tolerate taking valganciclovir because it made his insomnia unbearable. Insomnia has also been one of my longest standing problems and i'm prepared for it to flair up at some stage during the healing process, especially if it is HHV-6 that is causing the insomnia. I suspect it is, apparently it is able to get into the brain and likes the limbic system. But i'm willing and able to ride it out, i'm not working at the moment and I have six months to get through the worst of it.

 

[Matt_C]

My valganciclovir arrived today and I took my first dose. Just one pill per day for the first two days, then two for a few weeks until I get my bloods checked, then i'll up it to three as per Lerner's protocol. Looking forward to the future .

 

[ukxmrv]

You are disagreeing with some very highly qualified people here in Dr Lerner and Professor Marshall. What are your qualifications?

Regardless, we will have to agree to disagree, Professor Marshall has a broader understanding of herx/immunopathology and that's the one I will adopt.

I thought "Professor Marshell" was an electrican?