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Antivirals help extreme fatigue?

Tammy

Senior Member
Messages
2,181
Location
New Mexico
@Clerner..........first I want to say that I've been pretty ill for almost 20 years............so although the improvements seem too slow or too subtle at times.......they're enough to keep me going. I've never stayed on any given protocol for more than 3-4 months so I'm bound and determined to keep at it this time. I was diagnosed with CFS by a specialist back in 1997. I had high ebv titers. About 6 years ago I had another EBV test that showed reactivation.

My protocol:
Natures Answer Cats claw liquid tincture.(Uncaria tomentosa)............6 drops 2x daily.........for EBV
Natures Answer Licorice liquid tincture (Glycyrrhiza Glabra)...............6 drops 2x daily...........for EBV and adrenals
Solgar L-Lysine.......2,000mgs.............2x daily.........total 4,000mgs ............for EBV
Nutrex Hawaaian Spirulina Specifica......1 tsp daily........serving as my multi-vitamin, amino acids.....metals chelator, adrenals, thyroid
Vimergy Barley grass juice powder..........1 tsp daily....for adrenals, thyroid......pre-biotic
Eidons liquid zinc concentrate.........15 mgs daily..........good for immune system in general and also herpes virus variants.
Global Healing liquid B12 (80% methyl, 20% adeno).......2500 mcg's 2x daily..........I would like to double this in time.
Ester C.........2,000mgs 2x daily.......total 4,000mgs daily.

I'm almost 4 months into the protocol. I didn't start out with the above dosages........but worked up to them. The first two months were up and down with a couple of what some call herxes that lasted about 3-4 days where I felt more crappy than usual. The 3rd month was not much of anything good or bad. (I was tempted to stop protocol).....but glad I didn't because into the middle of the 4th month.......things kicked in a little and improvements moved up a notch.

The most significant improvement is the fluey all around crappy feeling.........that has improved the most. Also my brain doesn't feel inflamed like it did. The other thing I have noticed the most is improvement in my sleep. I could always go to sleep easily but my sleep was EXTREMELY restless. It is much less restless and is much more deeper. My symptoms aren't so extreme with ups and downs..............it feels like my body is running more even. The following symptoms have improved but like I said they are subtle improvements:
Energy, mood, muscle and joint pain, muscle weakness, cognitive, oi. These still wax and wane as to intensity.........but not to the extremes that they used to.

Sometimes when I don't think I'm making any progress I go back to my notes and have to remind myself that yes I am making progress..............also it helps that a friend of mine notices things that I don't even realize.

The following symptoms are gone. (they weren't debilitating) but it makes me realize that the supplements are doing something! Pain in scalp gone. pins and needles in lower legs gone. RLS gone. Pain in jaw area gone. Ringing in the ears gone. Areas on my body that itched like crazy and felt sunburned are gone.

I consider myself very early into this protocol...(considering the amount of time I've been ill)........I have a long way to go and I predict that if my progress continues it probably won't always be linear like I would like and I have to keep that in mind so that I don't lose hope.

Before I go I just want to say that I think diet is important but it's the one thing I havn't been ideal with. I try my best to stay away from wheat, dairy, bad sugars. Also I have been trying to eat healthy snacks more often to keep my adrenals happy.:)

Edit: I'm finishing up my 4th month on the protocol......not 5
 
Last edited:

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
@Clerner..........first I want to say that I've been pretty ill for almost 20 years............so although the improvements seem too slow or too subtle at times.......they're enough to keep me going. I've never stayed on any given protocol for more than 3-4 months so I'm bound and determined to keep at it this time. I was diagnosed with CFS by a specialist back in 1997. I had high ebv titers. About 6 years ago I had another EBV test that showed reactivation.

My protocol:
Natures Answer Cats claw liquid tincture.(Uncaria tomentosa)............6 drops 2x daily.........for EBV
Natures Answer Licorice liquid tincture (Glycyrrhiza Glabra)...............6 drops 2x daily...........for EBV and adrenals
Solgar L-Lysine.......2,000mgs.............2x daily.........total 4,000mgs ............for EBV
Nutrex Hawaaian Spirulina Specifica......1 tsp daily........serving as my multi-vitamin, amino acids.....metals chelator, adrenals, thyroid
Vimergy Barley grass juice powder..........1 tsp daily....for adrenals, thyroid......pre-biotic
Eidons liquid zinc concentrate.........15 mgs daily..........good for immune system in general and also herpes virus variants.
Global Healing liquid B12 (80% methyl, 20% adeno).......2500 mcg's 2x daily..........I would like to double this in time.
Ester C.........2,000mgs 2x daily.......total 4,000mgs daily.

I'm almost 5 months into the protocol. I didn't start out with the above dosages........but worked up to them. The first two months were up and down with a couple of what some call herxes that lasted about 3-4 days where I felt more crappy than usual. The 3rd month was not much of anything good or bad. (I was tempted to stop protocol).....but glad I didn't because into the middle of the 4th month.......things kicked in a little and improvements moved up a notch.

The most significant improvement is the fluey all around crappy feeling.........that has improved the most. Also my brain doesn't feel inflamed like it did. The other thing I have noticed the most is improvement in my sleep. I could always go to sleep easily but my sleep was EXTREMELY restless. It is much less restless and is much more deeper. My symptoms aren't so extreme with ups and downs..............it feels like my body is running more even. The following symptoms have improved but like I said they are subtle improvements:
Energy, mood, muscle and joint pain, muscle weakness, cognitive, oi. These still wax and wane as to intensity.........but not to the extremes that they used to.

Sometimes when I don't think I'm making any progress I go back to my notes and have to remind myself that yes I am making progress..............also it helps that a friend of mine notices things that I don't even realize.

The following symptoms are gone. (they weren't debilitating) but it makes me realize that the supplements are doing something! Pain in scalp gone. pins and needles in lower legs gone. RLS gone. Pain in jaw area gone. Ringing in the ears gone. Areas on my body that itched like crazy and felt sunburned are gone.

I consider myself very early into this protocol...(considering the amount of time I've been ill)........I have a long way to go and I predict that if my progress continues it probably won't always be linear like I would like and I have to keep that in mind so that I don't lose hope.

Before I go I just want to say that I think diet is important but it's the one thing I havn't been ideal with. I try my best to stay away from wheat, dairy, bad sugars. Also I have been trying to eat healthy snacks more often to keep my adrenals happy.:)
 

Clerner

Senior Member
Messages
249
Location
Sarasota Florida
Wow, that's a lot of stuff to take! How do you keep up. I take only about 5 supplements but will be getting some more. I also have RLS!
Thanks for sharing all that. I will look into some of those supplements. I have been thinking about going to a naturopathic dr.
I try to eat a good diet but it is hard! Small improvements is better than nothing. Good luck!
 

Andielyn

Senior Member
Messages
132
During a PEM episode, I need to take as much as 2400 mg. When I am not constantly exhausted, I seem to do okay with 1800-2100 mg.

I think I will add this to my regime. Thanks for the info @SOC (I've been diagnosed now by my PCP.)

@Clerner Hijacking your thread o_O as I had also asked about @Tammy 's natural antiviral treatment. I just started treatment with acyclovir and I am taking a couple supplements on my own. It looks like we might be in a similar boat. ~Andielyn
 

Andielyn

Senior Member
Messages
132
@heapsreal Would you mind sharing what antivirals you are taking? I work full-time but just recently went on leave to be taken intermently during PEM crashes. I have been taking an anitviral for about a month now. I am looking for as much info as possible as I am being treated by my PCP. Good to hear they help you and others! ~Andielyn
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@heapsreal Would you mind sharing what antivirals you are taking? I work full-time but just recently went on leave to be taken intermently during PEM crashes. I have been taking an anitviral for about a month now. I am looking for as much info as possible as I am being treated by my PCP. Good to hear they help you and others! ~Andielyn


It seems that cmv is my main issue and possibly vzv as had shingles this yearwhen i stopped avs . I dont respond to valtrex but famvir has been helpful and i have done a course of valcyte which helped.

It can take several months to see the effects of antivirals. For some they dont realize how much they helped until they stop them. So improvement is very gradual and subtle.

I also feel better on antibiotics which initially i used for chronic sinusitis but im now wondering if i have something bacterial also going on, maybe lyme but testing is out of my price range at moment and easier to treat .

I also had low dhea and cortisol and testosterone borderline low and have replaced these which has helped some.

Very low doses of modafinil has helped when im really dragging to keep up at work. I only use 50mg which helps with concentration etc but use it as required not daily , to avoid tolerance .

I also alternate different sleep meds as insomnia is one of my worst symptoms and doing this avoids tolerance and keeps doses down.

So its really the combination of things thats keeping me somewhat functional. When not working i dont do alot, mostly resting up. Sometimes I have periods of several weeks where i can be more active but still very much need to pace myself.
 

Andielyn

Senior Member
Messages
132
@heapsreal Wow, thank you! This is all very helpful. My underlying issue is EBV. I also think I could benefit from a prophylactic antibiotic because I have no spleen. I also have insomnia, good info to know switching it up helps. I have only been truly treating my insomnia in any real way for the last few months. Will look into modafinil. It's early for me on antivirals but I seem to feel a bit better and want to stick with it awhile to give it a real go. Can completely relate to not doing much when not working, I am resting my butt off as advised by members here when I first joined and before diagnosed. Thanks a bunch for your reply and sharing! ~Andielyn
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@heapsreal Wow, thank you! This is all very helpful. My underlying issue is EBV. I also think I could benefit from a prophylactic antibiotic because I have no spleen. I also have insomnia, good info to know switching it up helps. I have only been truly treating my insomnia in any real way for the last few months. Will look into modafinil. It's early for me on antivirals but I seem to feel a bit better and want to stick with it awhile to give it a real go. Can completely relate to not doing much when not working, I am resting my butt off as advised by members here when I first joined and before diagnosed. Thanks a bunch for your reply and sharing! ~Andielyn


If ebv is reactivating in you than probably have low nk function or other immune dysfunction, so always possible to get other infections or older bacterial infections may reactivate, horse or the cart.

Still early days for you on avs. If not improving to extent you think u should after several months than its worth testing for other bacterial infections or maybe a trial of doxycycline for a few weeks. Good to keep in mind and bring it up with your dr??
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
@Andielyn..................may I ask what happened to your spleen? Was it from the EBV?.......I've read where it can attack the spleen and even cause spleen rupture.
 

Andielyn

Senior Member
Messages
132
@Tammy No, the spleen is totally unrelated and due to an auto accident 20+ years ago where my spleen was totally ruptured and no part could be saved. You are right about the spleen though...EBV can cause an enlarged spleen which can rupture easily with any impact.
 

Andielyn

Senior Member
Messages
132
If ebv is reactivating in you than probably have low nk function or other immune dysfunction, so always possible to get other infections or older bacterial infections may reactivate, horse or the cart.

Still early days for you on avs. If not improving to extent you think u should after several months than its worth testing for other bacterial infections or maybe a trial of doxycycline for a few weeks. Good to keep in mind and bring it up with your dr??

Not sure what nk function is...I do have a compromised immune system to some degree from having no spleen. Right on with sticking with the avs for several months. I have seen some improvement, albeit slight, already. My chronic sore throat and swollen lymph nodes are much better. I think the plan is to recheck my EBV titers and I am seeing my doctor monthly right now. I have had many doctors say I should have always been on prophylatic bactrim or penicillin since my splenectomy, but then they always say some other doctor should have prescribed it. Ah the world of specialists! :bang-head: ~Andielyn
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Thought I would give an update. I am finishing up 9 months on my protocol that I mentioned earlier and have improved more to where now I am going on walks and enjoying them! The biggest improvement in the last couple of months has been my orthostatic intolerance. I no longer feel like I am being pulled down when I am in an upright position.............no longer looking for a place to sit down when I am out and about. This is huge for me. This was one of my worst symptoms.

I am at the position now where I feel like I can increase the dose of the Cats Claw and Licorice root.

The herbal anti-virals as well as the other supps I am taking are definitely working.
 

helen1

Senior Member
Messages
1,033
Location
Canada
That's so great @Tammy! Your patience is paying off, good to know as I usually quit after a month of anything.

I'm also on herbal antivirals and antibiotics, Buhner protocols, for CMV, CPN, Myco. Am using some of the ones mentioned on this thread plus more, all carefully sourced which is super important with herbs:

licorice root
ginger root
skullcap baical
bidens
sida acuta
cordyceps
astragalus
dan shen
coptis (berberine)
reishi

Am having difficulty finding the amounts that are tolerable as I'm finding the herxing too unpleasant, so keep backing off. I have to keep telling myself that's okay, small amounts are okay.

But I wonder too if small amounts of AVs and ABXs wouldn't create a more resistant population of pathogens?

Will be consulting with herbalist on Monday so will ask.
 

Andielyn

Senior Member
Messages
132
@Tammy, oh wow, what great news!! Thanks for the update! I am 7 months in with antivirals.

At times I think I'm improving...the PEM episodes seems shorter and my bad days are fewer, but then a week like last week comes along and it kicked my butt. I did manage to make it through the whole work week but I struggled. I am running out of FMLA leave (which I've been taking intermittently since October) so I am pretty much back in the position I was before my FMLA kicked in, pushing myself too hard.

This is such great news, Tammy! I am on acyclovir, for high EBV load. What cats claw and licorice root would you recommend and dosage?
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
Hi Andie................I take Natures Answer alcohol free liquid Cats Claw. I started with just 2 drops 2x a day and worked up to 6 drops 2x daily...........exact same brand and dosage for the liquid licorice. I started the protocol last July. Just last week I decided to increase the dosages of both of these anti-virals. I have talked to others that started on a higher dose of these herbal anti-virals .............but my body was just too sensitive.

There were times when I didn't think the protocol was doing a damn thing and I got discouraged...........however others who have taken similar anti-virals etc. encouraged me to keep going and I am glad I did because I am finally reaping the rewards.:)
 

Andielyn

Senior Member
Messages
132
Thanks @Tammy I will try those and see if it makes a difference. So glad to hear you are doing better! Were you taking acyclovir or valacyclovir?