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Does Valtrex work this fast?

picante

Senior Member
Messages
829
Location
Helena, MT USA
Since I started taking Valtrex (500 mg bid) Saturday (3 days ago), this is what I've noticed:

1. Neck spasms are milder, neck lymph channels congested less of the time. (I associate this cluster with immune activation.)
2. Air hunger (and accompanying heart sensations) is less severe and less frequent, so
→ I spend less time lying down, I'm more able to do tasks like dishes/laundry, go up stairs
→ I take less potassium → so I don’t need as much Zn and B1, either​
3. I’m tolerating more supplemental thyroid. At a tiny dose it was triggering frequent ravenous hunger, but without it, I was having food intolerance/gut-aches. Taking a bitty dose was like flipping a neuro-switch from "No Food, Please" to "Must Eat Now". (Without the thyroid, my TPO antibodies have been in the 1400-1700s, FT3 is tanked, FT4 is low.)

I still have groggy/foggy brain in the afternoon + inflamed sinuses + blurred vision. (I associate this cluster with neuro-inflammation.)

I noticed some improvements with the first dose. Has anyone heard of an antiviral working this fast?

I took Acyclovir in 2012 for shingles (800 mg every 4 hours), and it reduced all of my ME symptoms for 2 months after the 10-day treatment. But I don't remember it reducing them that quickly!

I had quite the exhausting discussion with an infectious disease doc last week, trying to persuade him to get me tested for more pathogens, as I haven't had tests for most Mycoplasmas or any enteroviruses or even the Varicella zoster that's associated with shingles. No luck there, but...

I managed to reason with him on trying the anti-viral, once he found out about my experience with Acyclovir. He was very resistant. ("There's no evidence that these treatments help ME patients.") I told him that depends on the patient. They help some people and not others. So if you average everybody together, I suppose you've got "no evidence". :p
 
Messages
53
After blood work showed scary high EBV titers, I went on 1,000 mg valacyclovir once a day. Within 3 days, I was much more energetic--aka one 20 minute nap a day, not 6 half hour naps, I had enough energy to actually do a load of laundry a day--load, dry, fold, haul upstairs, or walk the dog a short distance. I stayed on it for 4 months, and felt much better. Then the doctor said "no more". I did okay for about 5 months, then the exhaustion, inappetence, multiple naps a day, etc came roaring back. I pestered to go back on valacyclovir, and am now on my second month. Not as great an improvement this time, but still better than I was. For some reason, my doctor, who previously had no problem with me taking it for multiple months, is now fighting me. No idea what's going on. She told me there's "no treatment that works for ME". HUH?
 

Seven7

Seven
Messages
3,444
Location
USA
IT is supposed to last years (5 to 6) before you see improvement according to Dr Montoya, but I react very positive in things that will work at first then plateau. Just don’t over do before time.
 

Diwi9

Administrator
Messages
1,780
Location
USA
It took 5 weeks for me. A blog on PR from 2012 said one can expect improvement within 6 weeks. http://phoenixrising.me/treating-cf...mmune/antivirals-and-immunemodulators/valtrex

I had some improvements before 5 weeks (i.e. crashes were less severe and did not last long). After 5 weeks, I began waking up refreshed, going to sleep at a normal time, and a ton more energy without major consequences...my POTS also resolved without pharmaceutical intervention over a period of three days (at the 5 week mark). I don't know how long this will last...but as anyone on here can imagine...I desire it to work for the long haul.
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
Within 3 days, I was much more energetic--aka one 20 minute nap a day,
When I took the Acyclovir for shingles in 2012, it started to diminish within a day.

I wonder: if we get some positive results within days, perhaps there is at least one very active infection? You see, I started having swollen lymph nodes (neck) and infrequent sore throats around Sept. of last year. (Before that, my immune activation was just the neck spasms & headaches, always associated with PENE.) We had wildfire smoke from July 1st until mid-Sept.
After blood work showed scary high EBV titers,
Were they anything like mine? These were done 2014-2016, and my viral (meningitis) onset was in 1992.
EBV Ab VCA, IgG - 600.00 U/mL [0-17.9]
EBV Ab VCA, IgM – 36.0 U/mL [0-35.9]

EBV Early Antigen Ab, IgG - 133.00 U/mL [0-8.9]
2nd test - 150.00 U/mL [0-8.9]
EBV Nuclear Antigen Ab, IgG - 51.90 U/mL [0-17.9]
2nd test - 51.4 U/mL [0-17.9]
HHV 6 IgG Antibodies - index 7.32 [0-1.05]
 
Last edited:

picante

Senior Member
Messages
829
Location
Helena, MT USA
For some reason, my doctor, who previously had no problem with me taking it for multiple months, is now fighting me. No idea what's going on. She told me there's "no treatment that works for ME".
Try giving her a copy of
Myalgic encephalomyelitis, chronic fatigue syndrome: An infectious disease
and point out that you're in the patient category that is helped by antiviral therapy.

And see my post here, since I just heard something very similar from the new doctor I visited, who ended up prescribing the Valacyclovir: https://forums.phoenixrising.me/ind...n-infectious-disease-dr-do.44102/#post-961076
 

JES

Senior Member
Messages
1,320
IT is supposed to last years (5 to 6) before you see improvement according to Dr Montoya, but I react very positive in things that will work at first then plateau. Just don’t over do before time.

Nah, five years was the time it takes for NK cell numbers to fully normalize according to Montoya. Improvement, when it comes, typically starts around the three month mark (based on Lerner's studies and anecdotal evidence). On healthrising there was a case of a patient who had had CFS since 26 years, who had first signs of recovery ten weeks into an antiviral protocol and was able to start exercising two months later from that.

Anyway, improvement from less than a week of usage would likely not be from the antiviral effect, but from some other, probably immunomodulatory effect, that valtrex possesses.
 

knackers323

Senior Member
Messages
1,625
After blood work showed scary high EBV titers, I went on 1,000 mg valacyclovir once a day. Within 3 days, I was much more energetic--aka one 20 minute nap a day, not 6 half hour naps, I had enough energy to actually do a load of laundry a day--load, dry, fold, haul upstairs, or walk the dog a short distance. I stayed on it for 4 months, and felt much better. Then the doctor said "no more". I did okay for about 5 months, then the exhaustion, inappetence, multiple naps a day, etc came roaring back. I pestered to go back on valacyclovir, and am now on my second month. Not as great an improvement this time, but still better than I was. For some reason, my doctor, who previously had no problem with me taking it for multiple months, is now fighting me. No idea what's going on. She told me there's "no treatment that works for ME". HUH?

Constantly hearing comments like this from Drs, from other people and personally. It's wearing thin.

Why are there so many arrogant, uninformed, unintelligent, pig headed and close minded people in the medical profession?

It's not all but in my experience, the overwhelming majority.


Are they like this before entering the field or does the money and self sense of importance turn them this way.

Many of them probably joined the profession too much for the cash and not enough for reasons of trying to actually help people

If they'd spend a small amount of time keeping up to date with latest findings and other people's experiences instead of trying to churn through as many customers as possible they might know what they are talking about and be able to do their job properly
 

Diwi9

Administrator
Messages
1,780
Location
USA
Wow, that's wonderful!
I started feeling better and measure my heart rate daily. I was completely shocked. Normally I go from ~75 to 135/145 on standing. After I started feeling better, I checked and only went up to 105...so didn't medicated. I continued to check and now it's no longer going up...staying steady or no more than a 10 point climb without medication. I really could not believe it happened so fast. Now my resting heart rate has even dropped a few points.
 

picante

Senior Member
Messages
829
Location
Helena, MT USA
Why are there so many arrogant, uninformed, unintelligent, pig headed and close minded people in the medical profession?
LOL. If you haven't already, check out my post here: https://forums.phoenixrising.me/ind...n-infectious-disease-dr-do.44102/#post-961076

Just an example of an "evidence-based" doc who was not interested in the science. That buzz-term seems to be doublespeak for "whatever those in authority tell me to think". One of his statements was "Well if the NIH can't solve it, we certainly can't".

But the more I talked to him, the more he listened. Problem was -- air hunger & slow brain (but informed-sounding).
 

used_to_race

Senior Member
Messages
193
Location
Southern California
Constantly hearing comments like this from Drs, from other people and personally. It's wearing thin.

Why are there so many arrogant, uninformed, unintelligent, pig headed and close minded people in the medical profession?

It's not all but in my experience, the overwhelming majority.


Are they like this before entering the field or does the money and self sense of importance turn them this way.

Many of them probably joined the profession too much for the cash and not enough for reasons of trying to actually help people

If they'd spend a small amount of time keeping up to date with latest findings and other people's experiences instead of trying to churn through as many customers as possible they might know what they are talking about and be able to do their job properly

I do think many of them are like this to some extent before becoming doctors. Having recently graduated from university, many kids I know who're now in medical school were arrogant and insecure in undergrad. It's fine to have personal issues, but as a professional you need to leave these at the door. I think there's something about medical education (at least in the US) that enables this lack of professionalism.

I had a very bad opinion of doctors in general, but this year I've seen three doctors who, despite being imperfect, have made great impressions on me. One is Dr. Chia (who many people on here know about), and the other two are UCLA-affiliated doctors. I think for us it's important to find the right doctors, which can be a full-time job at times, but they do exist.
 

Seven7

Seven
Messages
3,444
Location
USA
You're talking about activity level? (Not medication.)
Both! If you take too much too fast is bad for some plp. But my comment was mainly on activity! I always tend to get over enthusiastic and then the benefits gets obscure w crash
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Since I started taking Valtrex (500 mg bid) Saturday (3 days ago), this is what I've noticed:

1. Neck spasms are milder, neck lymph channels congested less of the time. (I associate this cluster with immune activation.)
2. Air hunger (and accompanying heart sensations) is less severe and less frequent, so
→ I spend less time lying down, I'm more able to do tasks like dishes/laundry, go up stairs
→ I take less potassium → so I don’t need as much Zn and B1, either​
3. I’m tolerating more supplemental thyroid. At a tiny dose it was triggering frequent ravenous hunger, but without it, I was having food intolerance/gut-aches. Taking a bitty dose was like flipping a neuro-switch from "No Food, Please" to "Must Eat Now". (Without the thyroid, my TPO antibodies have been in the 1400-1700s, FT3 is tanked, FT4 is low.)

I still have groggy/foggy brain in the afternoon + inflamed sinuses + blurred vision. (I associate this cluster with neuro-inflammation.)

I noticed some improvements with the first dose. Has anyone heard of an antiviral working this fast?

I took Acyclovir in 2012 for shingles (800 mg every 4 hours), and it reduced all of my ME symptoms for 2 months after the 10-day treatment. But I don't remember it reducing them that quickly!

I had quite the exhausting discussion with an infectious disease doc last week, trying to persuade him to get me tested for more pathogens, as I haven't had tests for most Mycoplasmas or any enteroviruses or even the Varicella zoster that's associated with shingles. No luck there, but...

I managed to reason with him on trying the anti-viral, once he found out about my experience with Acyclovir. He was very resistant. ("There's no evidence that these treatments help ME patients.") I told him that depends on the patient. They help some people and not others. So if you average everybody together, I suppose you've got "no evidence". :p

Within my first week of Valtrex I noticed that the burning pain in my legs at night was much better.

Acyclovir did nothing for me at all.
 

raghav

Senior Member
Messages
809
Location
India
I have started taking Valtrex 500 mg b.i.d Should I undergo liver and kidney function tests after some months ? If so after how many months ?
 
Messages
14
I posted part of this on another thread
I started Valcyte 1800mg At the end of the 4th day I opened my eyes wide and said (out loud) "I feel different". And many of my autonomic symptoms started to improve. After 2 weeks, the dose was reduced to 900mg and I went downhill. Later back up to 1800mg and the very same routine. At the end of the 4th day "I feel different". I have been on that dose for 10 days and better each day. But we are waiting for blood test results on my liver (may be a problem). If so, back to a lower dose.
Everyone I have heard of has to be on it for months, although Jennifer Brea (Unrest) took Valcyte and her movie implied that she had very fast improvement.

UPDATE a few days later: I am improving greatly EVERY DAY! Not as much brain fog or confusion. Was able to do some computer work that I have been struggling unsuccessfully for several years. I have been able to follow recipes and to garden a little. I have ideas and enthusiasm. This is better than I have been in over 5 years. I am myself again!
I have few side effects except it is affecting my sleep. Trouble going to sleep and staying asleep. But that does not seem to affect my greatly-improved energy.

UPDATE 2 months later. Still improving everyday. This is like I was 10 yrs ago.
No more SLEEP issues. Instead I am sleeping long and deep. Sleep late every morning, to mid-morning. Having long detailed vivid dreams. It feels like I am healing so I am just going with it.
MUSCLES are working better. I used to have a hard time walking because of balance and because my muscles did not work smoothly and did not work together to walk. All that's gone! I can walk fine now. Not using a cane.
OXYGENis better. No more air hunger and my level has gone from 91 to 98.
My EMOTIONS were blunted before. NOW I have lively.
BRAIN. I am alert and can think, can make plans with multiple steps, still some memory problems but much better than before.
NOW I am so surprised I am this old (68). It is very like I have been in a SEMI-COMA for the last two decades and am now waking up. I feel like I am in my 50's. A friend commented that I no longer have dead eyes, that I am "there". This is weird but wonderful.
So I have been on Valcyte 1800mg a day for 3 months now. And I have SO MUCH TO DO!