• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Acyclovir for CFS & meniere's - Experiences, hair loss?, general thoughts?

Messages
16
Hi all,

I have been put on Acyclovir, 400mg 3 x per day for Chronic fatigue (and also through my own research for Menieres).

I have been on it for about a week with no changes. I have also just started taking L-Lysine alongside.

Does anyone have any comments or experiences on Acyclovir?

I am terrified by the idea of hair loss that I keep reading about. To the point where I'm considering stopping it. I've read people saying it hasn't grown back after losing it!

Does anyone know how much of a risk this is, how long it might take for the side effects (mainly hair loss) to start and if it would grow back fully if it did thin/fall out?

On the other side, how long might it take for me to know if I'm getting benefits from it?

Many thanks!
 

anniekim

Senior Member
Messages
779
Location
U.K
I took 4 x 500mg acyclovir for about seven months. Sadly, I had no benefits but also no side effects. Hope it helps you with no to minimum side effects
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I was taking about 1500 mgs and had no problems with it. I also noticed a subtle difference in my energy, maybe 2 months in? Not anything huge but I could talk more easily and do a bit more (within reason) without PEM. Definitely worth it for me. I stopped only because things went crazy in my life causing a crash and then I went on Famvir.

I would give it some time and see how it goes. I never heard of hair loss being a side effect from it. The benefits I think outweigh your concern.

Make sure you drink lots of water with it.
 

cb2

Senior Member
Messages
384
minkeygirl how come you went on famvir the second time instead of acyclovir? i too was taking acyclovir and didnt have any issue with hair lose .. hope this helps!
 

SOC

Senior Member
Messages
7,849
Hi all,

I have been put on Acyclovir, 400mg 3 x per day for Chronic fatigue (and also through my own research for Menieres).

I have been on it for about a week with no changes. I have also just started taking L-Lysine alongside.

Does anyone have any comments or experiences on Acyclovir?

I am terrified by the idea of hair loss that I keep reading about. To the point where I'm considering stopping it. I've read people saying it hasn't grown back after losing it!

Does anyone know how much of a risk this is, how long it might take for the side effects (mainly hair loss) to start and if it would grow back fully if it did thin/fall out?

On the other side, how long might it take for me to know if I'm getting benefits from it?

Many thanks!
If your "chronic fatigue" is mild enough that you're more worried about hair loss than your health condition, I'd say the acyclovir isn't worth it. ;)

If you have documented pathogens that need an antiviral, there are other AVs you could look into. However, I wouldn't suggest AVs unless you really need them. Taking them just for fatigue probably isn't worth any potential side effects.
 

cb2

Senior Member
Messages
384
SOC as far as the
If you have documented pathogens that need an antiviral,
documented pathogens.. does Dr. Lerner use the IGG levels or? is there a place i can look to see ? I go to dr montoya's clinic at stanford..
 

SOC

Senior Member
Messages
7,849
SOC as far as the

documented pathogens.. does Dr. Lerner use the IGG levels or? is there a place i can look to see ? I go to dr montoya's clinic at stanford..
If Dr Montoya's clinic is recommending Valtrex for you, then I imagine you really need it. In that case, I'd be more concerned about dealing with pathogens that could be causing serious health problems than with hair loss. ;) Having less hair will be small potatoes if you can't work, or socialize, or even get out of bed.
 

cb2

Senior Member
Messages
384
i started a new thread a bit ago about acyclovir vs valtrex... it would be great if you feel like taking a look