General Survey re: Anti-virals

[Woolie]

@Butydoc, there definitely seems to be some sort of predisposition in your family, and ultimately, I suppose we look for explanations that above all, fit our case. This is sensible, since we could be dealing with multiple different conditions.

Your point about your wife is a good one, and definitely points more towards "herx" type reactions being about something other than die-off.

 

[Woolie]

... oh, plus your URTI is an unusual trigger, I think? The Dubbo study didn't find this to be a common cause of MECFS if I remember rightly.

 

[heapsreal]

Hi Woolie and Heapsreal

My illness also started out with an acute viral upper respiratory infection. I developed CFS/ME at the age of 50, my brother developed the syndrome at age 20, mother developed Takayasu arteritis, an autoimmune disease at age 78 and my older brother died from MS at age 61. I find it difficult to believe all of my family developed these immune dysfunction syndromes as a result of an on going infection. It seems more plausible to me that my family has a genetic defect that predisposes us to develop these syndromes which may be precipitated by an acute infection or another stressor.

I don't know if other diseases like HIV have a "HERX" type of reaction from antivirals. My wife gets shingle outbreaks and responds well to acyclovir without any negative reaction while if I take the same dose of acyclovir, I get a substantial "HERX" type of reaction. There must be something else other than die off responsible for this type of reaction in CFS/ME patients.

Best,
Gary

I agree with you that its not a particular infection but its some type of immune dysfunction that allows whatever infection to take a hold. The immune dysfunction comes first, not the infection?? I guess in some the initial infection can switch on the immune system and leave it on where it over reacts causing inflammation etc. We are a mixed bag?

Low nk function always sits in my mind, it may just be a marker for cfs/me. But also just having low nk function would leave us open to viral infections and cancers.

Is it possible to have chronic infections with an elements of auto immunity?? I think its possible as many seem to have some part of the immune system over active that could cause auto immune issues and some parts of the immune system that function below par and leave us open to infections.

Looking at your family hx i can definately see why you think there is a genetic predisposition. In my family my mother had cfs/me/fibro although undiagnosed and was told she had depression but looking back i can clearly see she had cfs, with PEM, fatigue, insomnia, pain etc I dont know much about the rest of her family hx but my 4 siblings dont have cfs/me but whats interesting is all my siblings had asthma and eczema but i seemed to escape this, but this makes me think that i have a different make up with my immune system. I also never got sick until i got cfs.Also note my mother didnt have asthma either.

It is hard to look back at ones family hx and see if there is cfs/me as im sure the diagnosis would have been missed alot but possibly a family hx of mild depression etc could be cfs/me.

 

[Woolie]

@heapsreal @Butydoc, interesting. My history similar to heaps' - rude good health before the dreaded mono-type illness (never diagnosed at the time), which lasted months and was worse than death. Although I'd be hard pressed to find any family history of anything similar, or immune in general. Except perhaps that my uncle had eczema.

So maybe we are a mixed bag... Or maybe there are several ways to skin a cat - either a severe viral infection that was not effectively fought at the time (whether due to circumstances, recent viral/immune events, or predisposition), or one or more other major immune challenges... with the endpoint being some sort of immune exhaustion that sustains itself in some way we don't actually know yet?

As you say, heaps, our immune dysfunction doesnt seem as simple as overreactivity. it seems more likely its a mix of aspects that are functioning poorly and others that are overcompensating.

 

[lansbergen]

As you say, heaps, our immune dysfunction doesnt seem as simple as overreactivity. it seems more likely its a mix of aspects that are functioning poorly and others that are overcompensating.

Yes. Anybody ever looked at thymus function? The immune modulator I use has effects similar to thymus hormones.

 

[heapsreal]

Yes. Anybody ever looked at thymus function? The immune modulator I use has effects similar to thymus hormones.

I havent looked at thymus function specifically but have looked into a few thymus extracts but to costly to use long term. I do believe melatonin helps stimulate the function of the thymus gland, but i cant say melatonin has improved my immune function but this could also be due to doses. Some of the research i read about melatonin increasing immune function, they were using dosing 20mg and above?

@lansbergen whats your experience with thymus hormones etc?

 

[lansbergen]

I havent looked at thymus function specifically but have looked into a few thymus extracts but to costly to use long term. I do believe melatonin helps stimulate the function of the thymus gland, but i cant say melatonin has improved my immune function but this could also be due to doses. Some of the research i read about melatonin increasing immune function, they were using dosing 20mg and above?

@lansbergen whats your experience with thymus hormones etc?

I have not tried thymus hormones but the main reason for using the immune modulator was it seems to act similar to thymus hormones and I had reason to believe cellulair immunity disfunctioned in the infected animals. When I hink cellulair immunity I think thymus.

 

[Gingergrrl]

My history similar to heaps' - rude good health before the dreaded mono-type illness (never diagnosed at the time), which lasted months and was worse than death.

@Woolie Mine was very similar to yours except that I was officially diagnosed with mono at the time (from EBV) and it was immediately following a minor surgery (March 2012.) The surgery itself went well (as far as I know) but I got very sick immediately afterward. I had a fever for three straight weeks and five days post surgery was diagnosed with mono by positive IgM and other titers (and two years earlier when I had severe tonsillitis and tested for mono, all my EBV titers were negative) so this was my first infection.

I was deathly ill from mono with extreme sore throat, swollen tonsils w/ulcers on them, severe dehydration, swollen lymph nodes, liver tests off the charts to where I was almost hospitalized, fatigue where I could not even move, fever for over three weeks, bruises all over my body, etc.

I had believed that I made a full recovery and then ten months later (Jan 2013), started getting tachycardia and all kinds of weird autonomic symptoms. I got sicker and sicker but not officially diagnosed with ME/CFS until July 2014 by a specialist who said I met every criteria and had a classic case (and blood tests showed re-activation of EBV and extremely low NK function tests.)

I am taking Famvir since Aug 2014 and am very interested in any studies that you find (on any anti-virals and EBV, not just Famvir-- and really anything on EBV in general) so please keep posting! I really appreciate all of your research and hard work.

 

[Woolie]

@Woolie Mine was very similar to yours except that I was officially diagnosed with mono at the time (from EBV) and it was immediately following a minor surgery (March 2012.) The surgery itself went well (as far as I know) but I got very sick immediately afterward. I had a fever for three straight weeks and five days post surgery was diagnosed with mono by positive IgM and other titers (and two years earlier when I had severe tonsillitis and tested for mono, all my EBV titers were negative) so this was my first infection.

I was deathly ill from mono with extreme sore throat, swollen tonsils w/ulcers on them, severe dehydration, swollen lymph nodes, liver tests off the charts to where I was almost hospitalized, fatigue where I could not even move, fever for over three weeks, bruises all over my body, etc.

I had believed that I made a full recovery and then ten months later (Jan 2013), started getting tachycardia and all kinds of weird autonomic symptoms. I got sicker and sicker but not officially diagnosed with ME/CFS until July 2014 by a specialist who said I met every criteria and had a classic case (and blood tests showed re-activation of EBV and extremely low NK function tests.)

@Gingergrrl, How awful. I guess that makes you pretty young, since primary mono is rare after age 25. I was too, and it was much harder back then emotionally than it is for me now (I'm 50 now). In your 20s, you long to do so much, be fully engaged in life, and all you can do is watch the years go by.

Yours is very similar to my own experience, although by the time I did get tested (+3 months after onset), all that came up was high lymphocyte counts. My initial illness was also more prolonged - lasted around 4 months. Then like you, I "recovered", only to be hit again in a few months time, then again and again.

What you have on your side are at least some viable treatments that might give real help, especially since you're trying them nice and early.

I know no two of us are exactly the same, but it might encourage you to know that after the hell I went through in the first 2-3 years, the remission periods got longer and the relapses shorter, and I was able to finish my studies, and finally even get a good job. 25 years later, its still hard battling the relapses, which are still completely incapacitating and can last anywhere up to 3 weeks (sometimes with a good break between, but sometimes not). I'm lucky that my job as a University lecturer has a lot of flexibility.

Plus, your prognosis might be better than mine, if you get onto some effective treatments early enough.

I will definitely keep researching, and let you know what I find.

 

[Woolie]

I have not tried thymus hormones but the main reason for using the immune modulator was it seems to act similar to thymus hormones and I had reason to believe cellulair immunity disfunctioned in the infected animals. When I hink cellulair immunity I think thymus.

What immune modulator would that be, @lansbergen?

 

[lansbergen]

What immune modulator would that be, @lansbergen?

Levamisole

 

[Gingergrrl]

@Woolie

@Gingergrrl, How awful. I guess that makes you pretty young, since primary mono is rare after age 25. I was too, and it was much harder back then emotionally than it is for me now (I'm 50 now). In your 20s, you long to do so much, be fully engaged in life, and all you can do is watch the years go by.

Believe it or not, I actually got primary mono from EBV at age 41 (and I recently turned 44) so I am not young! This was confirmed by my ME/CFS doctor when he went through about 4-5 yrs of my medical records at my first appt. In 2010 I had severe tonsillitis (age 39) and was told 2x it was strep and then not strep (after two tests returned negative.) This was the episode that led to me being given Levaquin which caused major damage.

I was tested for everything under the sun in 2010 including mono (both EBV and CMV) and was negative on all counts including IgG. Then in 2012 after the surgery I had tonsillitis again. Once again the strep tests were negative but this time, the EBV IgM was positive showing current infection (combined with my off the charts liver tests and other indicators of mono.) So I was in the less than 5% of the population who got mono over age 40.

I was very lucky in the sense that I already had my masters degree and was well established in my career. Ironically though, I had only been dating my husband (then boyfriend) for about 8-9 months at the time I got mono from the surgery. We never dreamed that I wouldn't fully recover and about 2-3 months later we got engaged. It was literally one month after we got married that I began having unexplained dysautonomia and kept getting sicker but did not know why until my former naturopath tested me for re-activation of EBV which was positive on all counts. So I have literally been sick throughout my entire marriage. I pushed myself and continued to work full-time until the end of Feb 2014 b/c I did not know what was wrong and assumed I would get better. Had I rested early on, I may not be as sick as I am now.

What you have on your side are at least some viable treatments that might give real help, especially since you're trying them nice and early.

I try to tell myself that but I have already tried so many treatments that have worked for others but my system is unable to tolerate. But I am trying not to lose hope and thank you for reminding me. I really need constant reminders.

I know no two of us are exactly the same, but it might encourage you to know that after the hell I went through in the first 2-3 years, the remission periods got longer and the relapses shorter, and I was able to finish my studies, and finally even get a good job.

Thank you for sharing that and good for you for finishing your studies and getting a good job. I can tell from your comments about the articles that you posted that you are very intelligent and a hard worker. Ever since I have gotten sick, I wished that I had a stronger science background so I could seek out these articles and grasp them the way that you guys do.

25 years later, its still hard battling the relapses, which are still completely incapacitating and can last anywhere up to 3 weeks (sometimes with a good break between, but sometimes not). I'm lucky that my job as a University lecturer has a lot of flexibility.

That is wonderful and you just gave me a lot of hope. So if I am understanding you correctly, you were very ill for 2-3 years but then re-gained enough functioning to work again? What subjects do you lecture in at University? (only if you are comfortable sharing of course!) I know we are all different as you said, but I dream of being able to work in my career again even if it were just once a week as an unpaid volunteer.

Plus, your prognosis might be better than mine, if you get onto some effective treatments early enough. I will definitely keep researching, and let you know what I find.

Yes, please keep researching!!! Someone, someday is going to find the missing link and it could be anyone.

 

[Woolie]

@Gingergrrl, gosh, unusual to meet EBV so late in life! In my reading about EBV, there's an idea repeated often that the older you are when you first encounter it, the more severe your illness will be, and the greater the likelihood of complications. Childhood encounters are mostly asymptomatic, in fact. In the developing world most young kids are EBV positive, suggesting much earlier contact than in the West. Observations like this are given as support for the "hygiene hypothesis", which is essentially that we shouldn't try to avoid contact with viruses that are endemic, but rather, expose ourselves to them as early in life as possible. A new EBV vaccine is being developed, which might work in a similar way to early exposure but without the risks. If successful, it might save future people from the complications of adult EBV infection that some of us have suffered.

Its interesting that you had another severe, mysterious infection not long before the "doozy". A few other people, including @heapsreal, have reported a similar thing (I think his was the other way round, mono THEN chickenpox?).

That's right: my totally non-functional period lasted 2-3 years. Mine is a very relapsing-remitting type of MECFS, and the relapses just got shorter over time. In the first 2-3 years, each often lasted well over two months with only small breaks between. By year 4 (1994), the worst relapses were now only 2-3 weeks, and well separated, I could work fulltime again. The next 6 years were even better, even fewer, shorter episodes and long remissions. Almost normal, really. In the early 2000s, I had kids, which led to a setback, so things now more like in 1994, but still way, way better than the first 3 years.

I lecture in cognitive neuroscience/neuropsychology. So no medical expert, but the experience in reading papers and understanding arguments helps. But instead of the broad knowledge a doctor has, I just have a few islands in an otherwise dark sea of ignorance!

Definitely, take it easy when you feel crap, but don't beat yourself up because you didn't in the past. Maybe that impacted on your health, maybe it didn't, who knows? We're not to blame; we only do what normal people have done for years, and gotten away with!

Here's hoping you see some better health in the next 12 months!

 

[Gingergrrl]

@Woolie

I really wanted to reply to you but could not find this thread! (There are several other threads I am also still trying to find in case it seems that I am not answering someone!) I couldn't remember where we were having this conversation and then realized it was in the anti-viral thread that I had started myself

@Gingergrrl, gosh, unusual to meet EBV so late in life! In my reading about EBV, there's an idea repeated often that the older you are when you first encounter it, the more severe your illness will be, and the greater the likelihood of complications.

I think that is exactly what happened in my case and maybe if I had gotten EBV at a younger age, it would not have been as severe or led to ME/CFS (but who knows for sure?)

Its interesting that you had another severe, mysterious infection not long before the "doozy". A few other people, including @heapsreal, have reported a similar thing (I think his was the other way round, mono THEN chickenpox?).

I actually had three infections total- the first in 2010 was some kind of tonsillitis which was definitively not mono or EBV (I was tested) and thought to be strep but then negative for strep. They finally said it was haemopholis influenza (but I think they were guessing at this point and I will never know what that infection was.) In 2012, I got mono/EBV, and then in 2013, I got an unknown respiratory infection and two weeks later the tachycardia and dysautonomia started. I was not re-tested for EBV until Feb 2014 and at that point, the IgM and early antigen tests were positive and have remained that way ever since. I also now test positive IgM for VZV even though I had chicken pox at age 11.

That's right: my totally non-functional period lasted 2-3 years. Mine is a very relapsing-remitting type of MECFS, and the relapses just got shorter over time. In the first 2-3 years, each often lasted well over two months with only small breaks between. By year 4 (1994), the worst relapses were now only 2-3 weeks, and well separated, I could work fulltime again. The next 6 years were even better, even fewer, shorter episodes and long remissions. Almost normal, really. In the early 2000s, I had kids, which led to a setback, so things now more like in 1994, but still way, way better than the first 3 years.

What types of things did you do to improve your symptoms (sorry if you already said this!) or do you think this was just the natural course of how your illness played out?

I lecture in cognitive neuroscience/neuropsychology. So no medical expert, but the experience in reading papers and understanding arguments helps. But instead of the broad knowledge a doctor has, I just have a few islands in an otherwise dark sea of ignorance!

That is very impressive and you do not give yourself enough credit!

Definitely, take it easy when you feel crap, but don't beat yourself up because you didn't in the past. Maybe that impacted on your health, maybe it didn't, who knows? We're not to blame; we only do what normal people have done for years, and gotten away with!

I agree that it is so hard to know. If I had rested longer when I first got mono instead of going right back to work or if I had made different choices dating back to 2010 on many issues, would it have made a difference? I think it would have but there is nothing I can do about it now.

Here's hoping you see some better health in the next 12 months!

Thank you and I really appreciate it and for you too!

 

[physicsstudent13]

Hi Woolie,

My understanding concerning nucleoside type antiviral drugs is that they inhibit replication of viral DNA by incorporating these analogs into the viral DNA causing the termination of that sequence. It appears that these type of antiviral drugs are all phosphorylated prior to incorporation. Since the DNA sequences aren't complete, there wouldn't be any viral proteins produced, hence no virons are produced. If the cells were lysed as suggested by the articles you referenced, I would think one would see some viral paricles released into the plasma. There must be viral particles in the cells in order for the antivirals to work if the proposed benefits to treated CFS/ME is thought to be from their antiviral mechanism.

Lipkin was trying to find pathogens in patients plasma with CFS/ME. No pathogens were found. This is the reason why i'm starting to believe that Valcyte may benefit some people with CFS/ME by it's ability to suppress microglial cells rather than as an antiviral drug. I'm not sure why Lipkin used plasma rather than whole blood in his experiments, maybe whole blood would have yielded a different result.

I'm not sure why people with CFS/ME sometimes develop an abnormal response to Valcyte. Some have referred to this response as a "Herx" type of reaction. During the initial experiments with Valcyte, Montoya felt that this "Herx" reaction was a positive indicator of likely success. He has since changed his mind. I personally don't believe that cell death is the cause of this reaction. People report this type of reaction with many different types of treatment modalities. Supplements, antibiotics, antivirals are reported by many CFS/ME sufferers to cause this type of reaction. Many more questions than answers.

Best,
Gary

If valtrex stops replication of viral DNA then can't it destroy normal human cells as well. There are neurotoxic side effects listed for valtrex including headaches and altered consciousness which may indicate brain damage. I have never heard any doctor speak of Herx or of the need to treat HSV or EBV, CMV. Isn't this pseudo science?

 

[Valentijn]

If valtrex stops replication of viral DNA then can't it destroy normal human cells as well. There are neurotoxic side effects listed for valtrex including headaches and altered consciousness which may indicate brain damage. I have never heard any doctor speak of Herx or of the need to treat HSV or EBV, CMV. Isn't this QUACKERY?

I'm pretty sure that treating chronic or reactiving viruses with anti-virals is a well-grounded medical principle, not quackery.

I'm also sure you can discuss the side-effects of drugs with your doctor when he or she prescribes them.

 

[heapsreal]

altered consciousness which may indicate brain damage

altered conscious stated is a state between conscious and unconscious, its a very broad term and someone who is intoxicated after a big bender on the booze could be said to be in an altered conscious state. I have never heard of anyone having a reaction like this from valtrex. The only thing i can think of is if someone had a severe allergic reaction and loss consciousness, in that case it can happen with any drug and is probably put on the list like every other side effect with every other drug.

I have never heard any doctor speak of Herx or of the need to treat HSV or EBV, CMV. Isn't this QUACKERY?

try google, you will find plenty of studies on hsv/ebv/cmv and the treatment of them. I dont understand what u mean by quakery??

 

[minkeygirl]

Every drug has a laundry list of bad side effects.

You can't cherry pick which drug you want to attack for having bad side effects. Especially when as @heapsreal says, there are studies all over the place about how antivirals help.

That's a pretty big leap to call something quackery (a bit over dramatic) because of a side effect of a drug.

 

[physicsstudent13]

I had terrible aphasia and problems pronouncing words or processing words and hearing loss after taking rocephin, ampicillin, tinidazole, doxycyline, roxithromycin. I think it was the ampicillin even in single doses which did this to me and destroyed my hearing.
I think you still don't understand the risk of these drugs and the neurotoxicity. There is almost nothing you can do for aphasia and brain damage once the neurons are destroyed

I mean these antiviral drugs are toxic enough to damage viruses so they probably will damage healthy human cells. And there might not be enough scientific evidence to warrant treating EBV, CMV, HSV

 

[Sushi]

I had terrible aphasia and problems pronouncing words or processing words and hearing loss after taking rocephin, ampicillin, tinidazole, doxycyline, roxithromycin.

Were you taking these medications under the supervision of an M.D.?

I think you still don't understand the risk of these drugs and the neurotoxicity.

Who is "you"?

I mean these antiviral drugs are toxic enough to damage viruses so they probably will damage healthy human cells.

This is supposition--you haven't provided any evidence. Of course these drugs need to be taken under medical supervision.

Sushi