More fatigue with Famciclovir. I must continue?

[nsdn]

Hi.

After living in bed, thanks to the LDN and Mestinon I was able to go out at times to do shopping or walking, without PENE.

Three weeks ago I started Famciclovir 250 mg. every 12 hours. I had 2 weeks without effects and this week is worse, I do not get out of bed.

If the increase in fatigue is maintained how long is it reasonable to continue taking Famvir?

Thank you very much for your help.

 

[gbells]

Here's the RXlist summary for Famciclovir. Herpes patients get fatigue as a side effect 4% of the time.
https://www.rxlist.com/famvir-drug.htm#side_effects

 

[nsdn]

In treatments like antibiotics or Olmesartan I understand that a worsening may be hopeful but with antivirals I am not so clear.

Antivirals I understand that they can be a problem at the mitochondrial level as indicated by the latest theories.

 

[nsdn]

@Learner1 @Hip @heapsreal @BadBadBear

 

[Hip]

In treatments like antibiotics or Olmesartan I understand that a worsening may be hopeful but with antivirals I am not so clear.

If you look at Dr Martin Lerner's study using Valtrex, Famvir or Valcyte to treat ME/CFS, he says this:

Toxicity

After beginning valacyclovir (or famciclovir) or valganciclovir there were two to 10 weeks with worsening initial symptoms, decreased EIPS, and increased syncope, palpitations, chest pain, and muscle pain. These transiently worsening symptoms are Jarisch-Herxheimer reactions.

EIPS = energy index point score.


I understand that Famvir is usually better tolerated than Valtrex, in terms of side effects. Both are thought to be equally effective as EBV antivirals.

 

[wigglethemouse]

Davis/Naviaux caution the use of antivirals if you do not have an active infection.

Q7. How would you respond to Dr. Ronald Davis’s recent statement: “What is important to note is that in the absence of evidence of an active infection, it is plausible that the long-term antimicrobial treatments often used for ME/CFS patients are doing more harm than good.”

I am in complete agreement. Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks). Because mitochondria are descendants of free-living bacteria, their machinery for protein synthesis, RNA synthesis, and DNA replication are susceptible to many antibiotics, and for reasons unique to mitochondrial DNA synthesis, they are also sensitive to antivirals. Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection.

Source : https://www.omf.ngo/2016/09/09/upda...-fatigue-syndrome-q-a-with-robert-naviaux-md/

Meds either improve, do nothing, or make you worse. We are all different. Listen to your body

 

[gbells]

Based on the half-life of EBV in patients treated with valacyclovir and assuming that valacyclovir acts similarly on B cells in tissues as it does in the blood, we estimate that it would take 6 years of 500 mg of valacyclovir once each day to eradicate 99% of EBV from the B-cell compartment and 11.3 years to eliminate the virus completely from the body if persons were not reinfected during this time.

Ouch, 11.3 years to cure EBV. Way too long and expensive ($4,068).
J Virol. 2009 Nov; 83(22)

 

[Hip]

What happens to a CFS patient after they stop the Valtrex? Does it recur? What's the cure rate?

On this forum, anecdotally I've seen better results from Valcyte than from Valtrex. I don't remember seeing any full remissions occurring from Valtrex, but I have seen those with Valcyte. Some Valcyte stories here.

In some case, taking Valcyte for around 1 year and then stopping completely led to long-term remissions lasting a decade; in other cases, the illness returned months after stopping, and is only kept at bay by continually taking Valcyte.


However, if you look at Dr Lerner's antiviral studies, according to those Valcyte and Valtrex have similar efficacy (but note Valtrex is only used for EBV, whereas Valcyte covers ME/CFS linked to EBV, CMV and HHV-6).

 

[gbells]

I don't understand the point of starting a suppressive antiviral medication (valcyte, valtrex, etc) that won't clear the infection and won't be taken indefinitely. It seems like a bad strategy.

The UK banned these drugs for this purpose.

 

[Mel9]

Hi.

After living in bed, thanks to the LDN and Mestinon I was able to go out at times to do shopping or walking, without PENE.

Three weeks ago I started Famciclovir 250 mg. every 12 hours. I had 2 weeks without effects and this week is worse, I do not get out of bed.

If the increase in fatigue is maintained how long is it reasonable to continue taking Famvir?

Thank you very much for your help.

Another example of symptom relief with Mestinon.

@Hip - I have just turned my life around with Mestinon too - what are your thoughts?

 

[Hip]

@Hip - I have just turned my life around with Mestinon too - what are your thoughts?

What sort of benefits are you experiencing with Mestinon (pyridostigmine), @Mel9 and @nsdn? Is it an overall improvement in ME/CFS symptoms, or more specific things, like @nsdn says that pyridostigmine enabled him/her to go out walking without getting PEM afterwards.

What pyridostigmine dose are you guys taking, and in what sort of timescale did the benefits appear?

I tried pyridostigmine myself at doses of 45 mg daily, but did not notice much. Though my ME/CFS involves more mental-exertion PEM than physical-exertion PEM.


Cort has an interesting article on pyridostigmine: A Mestinon Miracle: Vagus Nerve Stimulating Drug Helps Long Time ME/CFS Patient Exercise — this patient takes 180 mg of pyridostigmine daily, and suddenly finds she is able to go for a run or do a gym workout without getting PEM. Though she also has POTS, and pyridostigmine is known to help orthostatic intolerance.

This study of 3 ME/CFS patients found they all responded to 10-30 mg of pyridostigmine.

Dr David Systrom has a clinical trial of pyridostigmine for ME/CFS, see here.


The assumption is that pyridostigmine might work for ME/CFS via its action on the parasympathetic nervous system, via its boosting of acetylcholine, or by its known benefits for orthostatic intolerance.

However, I just found this study which says pyridostigmine has effects in the mitochondria (it reduces mitochondrial hexokinase). I wonder if that might explain pyridostigmine's apparent anti-PEM effects?

 

[Mel9]

Thanks @Hip

Mestinon at 30mg (half a tablet) every four hours allows me to have a relatively active day (4 km walk slowly, then another short activity after a rest) as long as I don’t overdo it and take it easy on the following day.

Previously my legs were too heavy and tired to walk at all, mostly.

I don’t have the normal PEM with horrible pain anymore, although I am still what I might call ‘pleasantly weary’ on the day following my walk and tend to lie around, reading etc

Previously, just walking around the house was exhausting and I often was unable to get out of bed.

On top of that, my POTS is greatly reduced and my heart rate does not increase by 30 bpm after standing for 10 minutes. Also, I can now tolerate sitting for a few hours without pain in legs and head.

 

[Hip]

That seems like a substantial improvement in your ability to tolerate physical exertion, @Mel9. Glad it has made such a difference.

I've just added pyridostigmine to the growing list of PEM busters.

I notice there is an extended release form of pyridostigmine called Mestinon Timespan that releases its ingredients slowly over a 12-hour period.

 

[nsdn]

Mestinon 60 mg. x 3 or 4 each day.

 

[heapsreal]

I don't understand the point of starting a suppressive antiviral medication (valcyte, valtrex, etc) that won't clear the infection and won't be taken indefinitely. It seems like a bad strategy.

The UK banned these drugs for this purpose.

Even those with organ transplants arent given antivirals for suppression therapy?

The idea behind it in cfs is to try and get your viral load low enough that your own immune system can control it. But it seems going by dr lerners work, one may need to stay on antivirals for several years.

I cant say its a bad strategy as its been one of the best treatments for me.

 

[gbells]

Makes sense. I don't think it would work for long term patients who have a large number of infected cells.

 

[hopefulalligator]

Thanks @Hip

Mestinon at 30mg (half a tablet) every four hours allows me to have a relatively active day (4 km walk slowly, then another short activity after a rest) as long as I don’t overdo it and take it easy on the following day.

Previously my legs were too heavy and tired to walk at all, mostly.

I don’t have the normal PEM with horrible pain anymore, although I am still what I might call ‘pleasantly weary’ on the day following my walk and tend to lie around, reading etc

Previously, just walking around the house was exhausting and I often was unable to get out of bed.

On top of that, my POTS is greatly reduced and my heart rate does not increase by 30 bpm after standing for 10 minutes. Also, I can now tolerate sitting for a few hours without pain in legs and head.

Do you take a dose at dinner time and bed time as well?