Acyclovir

[gracenote]

neuro-immune to immune-deficiency

The neuroimmune problems may be the result of all the viral co-infections which creates a downward spiral: Immune deficiency allows viral infections which causes neural damage - some of which impacts the neuroimmune system. Neuralimmune issues further suppress normal immunity and then it's time to hang on! Shane

Just to further clarify, I think you are saying that a neuro-immune state can progress into an immune-deficiency stage? So then hang on? That would make sense to me, but just want to check to see if that's what you mean.

 

[CBS]

Neuroimunity and the mid-brain

Just to further clarify, I think you are saying that a neuro-immune state can progress into an immune-deficiency stage? So then hang on? That would make sense to me, but just want to check to see if that's what you mean.

The central nervous system and the endocrine system become difficult to distinguish in the hypothalamus (midbrain). This is a pretty rudimentary example but one thing that the hypothalamus does is detect circulating levels of various hormones (eg. cortisol and T4). When those levels drop below a certain point, the hypothalamus produces releasing hormones (eg. CRH and TRH) that flow to the anterior pituitary and the pituitary in turn produces hormones that stimulate our glands (ACTH and TSH). When circulating hormone levels (say, cortisol and T4) rise to sufficient level, the hypothalamus detects this and stops producing the releasing hormones.

For the record, this process goes on constantly but the appropriate levels of the circulating hormones change throughout the day (diurnal rhythm) and its not always the circulating hormone itself that is detected by the hypothalamus (chemically, there are sometimes a series of substances that are produced by the metabolism of a hormone or are required to produce a hormone). Problems can arise in the chain of necessary events to regulate hormones but if you stick with the preceding paragraph you'll understand the basics.

For one, cortisol is the primary hormone produced by the adrenals and it plays a huge role in the immune response and is a powerful anti-inflammatory.

Mess up the CNS (part of which is the hypothalamus) with a viral infection (directly via nerve damage or indirectly via inflammation) - you get abnormalities in the Hypothalamic/Pituitary/Adrenal axis (sometimes subtle, sometimes profound). You lose tight control of your cortisol levels and then you can have periods of deficiency or periods of excess, sometimes you vacillate from one to the other.

Too little cortisol, you generally feel lousy and you could die (or wish you would), too much and you might feel fine, even great, for a while but you're immune system is severely depressed (and a lot of other things are falling apart behind the scenes) and you are left wide open for all sorts of infections (some of which could kill you). Some of those infections may be viral and the whole vicious cycle picks up speed.

Cortisol is just one of many hormones controlled in this manner but it is the one that is most frequently associated with immune function.

Shane

 

[cfs since 1998]

Valtrex patent expired a few months ago. If is superior to Acyclovir and I would look into switching if you are tolerating the acyclovir well but aren't improving.

I don't think of ME/CFS as being an autoimmune disease

I don't either, but it seems there are elevated rates of comorbid autoimmunity in CFS. I am a very typical CFS case but have no autoimmunity as far as I can tell. I have taken many supplements that some patients say they can't take because it causes an autoimmune flare, and I had no reaction to them.

 

[heapsreal]

hi

A drug called probenecid(gout med) can and is used to increase the concentration and half life of some meds, especially antibiotics and antivirals

 

[jackie]

Hi Shane! Finally respoding to YOUR response!

BTW, can you explain how I can highlight (in blue boxes) your Q's so that I can answer...right now I just have to keep back-clicking to the original post and answering each Q, that way! Ridiculous, I know...but I've never learned the how-to's!

So, to clarify: (sorry 'bout that!)
1. Months 1 - 3..........1,000mg per day
Months 3-18..........1,200mg per day
Months 18-42+(present)..3,200mg per day (think that's right!?)

2.I think you mentioned SIBO/Xifaxin a while back (and when I'm feeling better I have LOTS of Q's for you re:SIBO!...the reason is a long "story", but important - so I'll wait a bit!)

3.I'm actually delaying a stomach Biopsy...because I can't bear the thought of the Anesthesia needed! (I don't do "well" with that..as in I don't easily WAKE UP!

In fact, I have such a difficult time, that I've had several surgeries (Carpel Tunnel, biopsies) and stayed AWAKE during the operations, just using locals.) When I was having nerves in my spine cauterized, it took HOURS to awaken me from slight sedation!

Dr. Chia gently "encourages" me to have one...but at this point my treatment would probably be the same - even if I KNEW exactly WHICH Enteroviruses were present (since so many can be found this way, yet so FEW can be identified in the blood). Maybe later! So sorry that you must pay O.O.P. for this! I'm very fortunate that I'd be covered for the Endo/Biopsy...just not the special testing of the results (that's about $250, I believe).

3.I have not noticed "itchiness"

4.Re: Shingles...they're liveable! I have an area on my Bicep and one on my Thumb, of all places! - but they rarely appear (they are inside), so I feel the pain and the creepy-crawly, itchy sort of "drawing, tingly" sensation, but when they DO appear...they peek out a bit, then like magic - they're gone!

The band on my neck is a different story...they hurt, but the terrible accompanying headaches are brutal. Since they're across the back of my neck (and up into my hairline) I can't even see them.

My husband very patiently uses a flashlight to observe (my hair is thick, now - they're difficult to see) and notes what stage they're in..as they NEVER entirely go away. We do this every few days and keep a log. They appear flat (no bumps - like at the beginning stages) MOST of the time...but when I crash, they will develop into the blisters that eventually crust over.

My Doc says MANY of his patients w/Ent's (and taking Acyclovir or Valtrex) have this happen every month for YEARS!

I notice that my "warning" for an outbreak is a sore throat/swollen glands (deep, achy) AND my voice gets "scraggly" (husky, laryngitis-like)...and the back of my head (on one side only, where the offending lymph-gland source is) feels like it's been kicked by a horse! (well...mabe not quite like a HORSE...but still, not very nice!)

Also, thanks to all who explained the differences between Auto/Neuro/Immune-compromised! So much valuable info...but I need to read it again and again to really comprehend!

Note: my teeny tiny puncture infection is getting better, now! And so am I

Take care, "GROUP"........jackie

just saw Probenecid med info - will research, thanks! see what a good idea your thread is?!

 

[jackie]

Peeps...Since I don't know how to EDIT and add something to my previous post, I wanted to also clarify: When I mentioned having "nerves cauterized" in my spine....I was referring to Radio-Frequency Thermo Coagulation.

I had WAY too many procedures done over about a four month period. Unfortunately, mine were performed by the MARQUIS DE SADE!!!! (and did not help, anyway...I was just left emotionally TRAUMATIZED! (another!)


jackie

 

[gracenote]

maybe I can help

Peeps . . .Since I don't know how to EDIT and add something to my previous post . . .

BTW, can you explain how I can highlight (in blue boxes) your Q's so that I can answer...right now I just have to keep back-clicking to the original post and answering each Q, that way! Ridiculous, I know...but I've never learned the how-to's!

Jackie, maybe I can help. (And maybe this will help someone else.)

TO EDIT YOUR POST: on the bottom right hand of your post you will see an "edit" button. Press that and you will be able to edit your post. (You won't be able to add "smilies" at that time, just so you know. )

TO QUOTE SOMEONE: Copy the quote you want from their post. Position the curser in the "reply to thread" box you're working in where you want the quote to appear. Go to the menu bar and click on the 4th symbol from the right (it looks like what they put words in in comics), then paste your quote.

TO QUOTE SOMEONE AND HAVE THE QUOTE LINK BACK: (like I did at the top of this post) Go to that person's post, and instead of "post reply" like you normally do (which is on the bottom left under each post), click on "quote" on the bottom right inside their post. This will copy their whole post. Cut what you don't want.

I hope this helps and doesn't confuse further.

And if you want to add "smilies," they can be found on the menu bar at the top of the reply box.

Please, please, please someone, anyone if these directions are in error, by all means correct me.

 

[jackie]

Thank You Gracenote!....you always come through for us! You've made it very understandable (even to me) and it's a great help. Can't wait to try it out!

As for the smilies...I discovered them awhile back - and my life has never been the same!


jackie

 

[CBS]

Valaciclovir is contraindicated in immuno-suppressed patients

Just an fyi...

I realize acyclovir is cheaper, but Valtrex (valacyclovir) is more effective. Better absorption allows 3-5 times more bioavailability.

http://www.valtrexhcp.com/about-valtrex/about.html

If you're not having any luck with acyclovir, make the switch to valacyclovir, and see if that helps before giving up. It's only FDA approved for HSV (types 1 & 2) and chicken pox/shingles. Anything else is just experimental. All CFIDS treatment is trial and error.

Edited to add: Apparently Valtrex's patent expired this month. There is now a generic valacyclovir available. Much cheaper. Good luck!

According the the wikipedia page on valacyclovir "Valaciclovir is contraindicated in immunosuppressed patients such as those infected with HIV as it may cause thrombotic thrombocytopenic purpura and hemolytic uremic syndromes resulting in kidney failure. Aciclovir is preferred in these patients."

The Valtrex site gives a similar but less ominous warning.

It sounds like in those with immune dysfunction, valtrex can cause serious kidney problems. I image that the longer you are going to take these meds, the greater the opportunity for serious complications.


Also - Is anyone else in the US having the same issues with availability that I am running into?

 

[faith.hope.love]

According the the wikipedia page on valacyclovir "Valaciclovir is contraindicated in immunosuppressed patients such as those infected with HIV as it may cause thrombotic thrombocytopenic purpura and hemolytic uremic syndromes resulting in kidney failure. Aciclovir is preferred in these patients."

The Valtrex site gives a similar but less ominous warning.

It sounds like in those with immune dysfunction, valtrex can cause serious kidney problems. I image that the longer you are going to take these meds, the greater the opportunity for serious complications.


Also - Is anyone else in the US having the same issues with availability that I am running into?

The Wiki page is not accurate. Here's a more thorough (accurate) explanation:

Thrombotic Thrombocytopenic Purpura/Hemolytic Uremic Syndrome (TTP/HUS)

TTP/HUS, in some cases resulting in death, has occurred in patients with advanced HIV disease and also in allogeneic bone marrow transplant and renal transplant recipients participating in clinical trials of VALTREX at doses of 8 grams per day. Treatment with VALTREX should be stopped immediately if clinical signs, symptoms, and laboratory abnormalities consistent with TTP/HUS occur.

http://www.rxlist.com/valtrex-drug.htm

They're referring to advanced HIV disease with 8g per day, not CFS with a therapeutic dose of 500mg per day, up to 2gm per day. Most people with CFS are not immunodeficient, their immune systems tend to be more OVER active, which is why PWC have so many viral reactivations. You simply cannot compare CFS with HIV, they are 2 very different disease processes. I wouldn't discourage ANYONE from taking valacyclovir if they find it helpful. My best advice, always ask your physician before adding, changing, or discontinuing any medication. What is right for one person, may not be right for another, and vice versa.

 

[CBS]

acyclovir and valacyclovir

Most people with CFS are not immunodeficient, their immune systems tend to be more OVER active, which is why PWC have so many viral reactivations.

You simply cannot compare CFS with HIV, they are 2 very different disease processes.

I wouldn't discourage ANYONE from taking valacyclovir if they find it helpful. My best advice, always ask your physician before adding, changing, or discontinuing any medication. What is right for one person, may not be right for another, and vice versa.

FHL,

There is a lot we don't know about CFS. We aren't even sure if we all have the same thing. I myself am immunodeficient (we can discuss that via PM if you're interested). Opinions do differ on the immune status of CFS patients.

My point was to be careful. A lot of the primary care docs that folks are seeing may add something without having a complete picture of all that may be going on with a particular patient. Believe me, with all of the trouble I am having getting acyclovir, I would love the convenience of a valacyclovir Rx (so would my pharmacist - plus, as you pointed out, a generic became available in late Nov. '09). Also, it isn't uncommon for infectious disease docs to prescribe 3+ grams of acyclovir (which I agree, given the potency of valacyclovir (8 grams), is a drop in the bucket). That said, some of us are on antivirals for years some and amongst that group, there are signs of kidney issues even on acyclovir.

I could not agree more with your 'Best Advice:' always ask your physician before adding, changing, or discontinuing any medication. What is right for one person, may not be right for another, and vice versa.

Shane

 

[leaves]

hey all, I stopped taking acyclovir, took it for a month or so. Didnt do nothing but stirring up a few viral infections in the beginning.

 

[gracenote]

I was just going to look up this site to see when I started back on Acyclovir. It turns out that today it will be one month. I don't think anything has changed for better or for worse. It's taken me quite a while to get my system down to take it 5 times a day. I'm trying to decide if I want to continue. Will probably finish the remainder of my prescription and then decide. We'll see.

 

[jackie]

Hi Leaves and Gracenote:Retro smile:...Funny I just remembered to drop in tonight and "check" on everybody!

I had a rough month and at one point was concerned that maybe I'd reached the end of the AV's effectiveness.

Very bad crash, with an exacerbation of symptoms that I haven't experienced for over 1.5 years...I think the AV was keeping those symptoms under control. The extreme neurological MS-like ones...numbness and crushing pain in foot and leg (neuropathic pain), difficulty walking, stuff like that.

But fortunately, after a few weeks I pulled out of the bad patch - so I think acyclovir is still doing it's job! I'm back to where I was a month ago...that's good!

All that I've been left with is an increase in shingles (but my dr. said this may always be the case) Re: "stirring" up a few Viruese...that's what happened to me with the Shingles! They started not too long after beginning the acyclovir.

Leaves...did you had any side effects during your month of AV?...or just no improvement? I didn't see ANY improvement for at least 5-6 months when I started...and no dramatic improvement for another year and a half or so.

It can be a long ( and sometimes frustrating!) process...and also depends on your dosage. Maybe (if you are not too uncomfortable)..you could give it a bit longer? What does your Doctor advise? (what did he say about the viral reactivations? good or bad sign?)

Gracenote...wondering the same about you! Did your Doctor say to expect positive results that quickly? Initially I was very impatient for some "signs" of improvement but my Doc kept reminding me that it takes a while. How about your side effects? Have they been very bad? And, what does YOUR doc advise?

take care, guys! jackie:Retro smile:

 

[gracenote]

Gracenote...wondering the same about you! Did your Doctor say to expect positive results that quickly? Initially I was very impatient for some "signs" of improvement but my Doc kept reminding me that it takes a while. How about your side effects? Have they been very bad? And, what does YOUR doc advise?

take care, guys! jackie:Retro smile:

I just had an appointment today with my doctor. I crashed halfway through the appointment, got chilled and had to lie down and bundle up. I'm still very crashed and fluey feeling.

I told him I'd been on Acyclovir for about a month and didn't notice anything, but we moved on to other topics. The reason he wanted me to try it was to see if it helped raise my glutathion levels and thus my energy level. He's fine with me continuing to try it I think it's up to me. I'm having such a hard time this winter due to environmental molds (I do every fall and winter) and we kind of got sidetracked on that. Basically he doesn't think I'll have much improvement from any of my protocals as long as I have a mold issue and he thinks this county is not a very good place for me mold-wise. He suggested I go live in the desert for several months to give my body a chance to heal.

I think for the first couple of days I noticed a little viral activity on Acyclovir, but nothing much. It's very different from when I was on Valcyte. But it is hard for me to tell what's what. The weather has been on and off rainy and cloudy and that for sure impacts me negatively.

So, I don't know. We don't plan to retest viral loads so I guess my decision will be based on symptoms. I don't mind trying longer, I just don't know if it makes any difference at all for me. The remembering to take it part is the challenging part, but I've kind of gotten the hang of it and am feeling a little proud of that. I feel like I'm at least accomplishing something. :Retro smile: