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Hello All
I am new here so I thought I would start a thread with my own experiences with cfs and antivirals. Sorry if this is a lot of random unorganized information .... I do not have much time and I am quickly jotting it all down as it may help some. I am now almost into month 3 in which i started first on just valtrex 1G a day and then valcyte 450mg 2x a day about a month later. I take both and stagger each about every 4 hours. For a while i was splitting the valtrex but i got tired of taking so many pills and just take them breakfast, lunch and dinner. These all can interfere with each other so it is good to split them apart. As a side note, I live in NYC and as a precaution I take the new HIV prevention antiviral called PreP/Truvada which prevents contracting HIV should a condom break or I am bad and do something risky. I'm mentioning this just because it is also shown to prevent Herpes related viruses in some studies and i have noticed some improvement after taking this before I even was diagnosed with CFS. More on this below.
so overall these make you feel like crap the first few weeks but eventually that goes away ... I have read a lot of people that throw out the term Herx when they talk about these antivirals but there should be no herx effect. That is not the way these drugs work. There is no die off with antivirals and they just prevent the virus from replicating. These are however poisonous to your body and do make you feel like crap over time.
To start, I will say that I have had CFS (from what i can remember) for about 5 to 6 years. To be honest I did not know it was CFS until about 3 or 4 months ago. I am a 41 year old male and In all honesty I was about to jump on the "low T" bandwagon as I thought this was the cause of my issues as I did have slightly low Testosterone count but not enough to be on replacement therapy.
After fighting through fatigue, weird issues with my eyes, headaches, dizziness, and many other issues for years I spent the last 5 years fighting this without even considering it was CFS. (complete list of symptoms listed below) I was never bedridden and was probably at a scale of 5 or 6 at my worst. I am at an 8 or 9 now.
Finally after getting fed up and visiting 6 different specialists I finally had my allergies checked and this was the DR that suggested CFS. I live in NYC and From there I visited Dr Susan Levine who has an office a few blocks from me. From there I discovered I had an active HHV6, EBV (>600), EBV early antigen (28.2), EBV Nuclear antigen (404), active CMV ... whatever all this means i was told i had a reactivated EBV so thus my journey began on valtrex and then valcyte.
Before I even visited the dr, I had been fighting this on my own with herbals that can fill 2 drawers in my dresser. (Again i will paste below) I actually had some really good results from using herbs through trial and error and and found out that many of these are herbs people use to fight CFS before I even knew I had CFS.
I also compiled a list of notes for my DR which I am going to paste here below and then I will (as time permits) update my post on my status.
I will say that I was already on the road to recovery before I visited Dr levine however i had a severe crash which prompted me to visit her 4 months ago. This crash ended up being walking pneumonia which was also treated. Because of this I am coming out of a double exhaustion phase with both the CFS and pneumonia so its hard to put numbers on how well i felt before and after antivirals (clearing the pneumonia made me feel great) but I can say i am feeling better than i have in 5 years. There is still exhaustion ... after I come home from work I lay down immediately however my headaches and eye issues cleared up after 4 weeks on the valtrex and 2 weeks on valcyte. After 2 months, my sleep just recently became really really good after years of insomnia. My dizziness is about 70% better and my fatigue about 30% better. I am at the gym now 5x a week and actually feeling good. I have amazing bursts of energy i have never had for years. I feel like visiting friends and going out which i have not in years. The dr also put me on low dose vivanse which is basically prescription amphetamine but it really helps me make it through work (i have a high demand sales job in nyc).
I mentioned above that I was already on the road to recovery over the last year. I cant positively link this to Truvada but around the time i started taking this about 1 year ago, I can say that my life slowly became better and i became more active. I forced myself to go to the gym first weekly and then daily. At first I had some crashes after the gym but not even knowing I had CFS i just pushed through all this. Again, I was never bedridden or as bad as some people on here ... I thought I just had low T so i pushed myself harder and harder. The gym became a job a forced myself to do 3x a week and then 5x a week. Obviously this is my personal experience. I know dr's recommend you do not go to the gym until you are in a recovery phase. To me it was the single best thing I did for my recovery over the course of a year.
On a side note, after I was diagnosed i did spend a night googling things like "how i cured my cfs" and I discovered one common theme from a lot of people out there that have bat this. Many changed their gut flora either through diet, antibiotics or probiotics. A year ago I also changed my diet ... my biggest change in my life was that i went on a ketogenic diet (basically a form of atkins / high healthy fat and low carb). I am very careful with sugar. I also supplemented with probiotics. Recently i read articles from 2 separate people who fought this off quickly and dramatically took high doses of probiotics which I copied and also had great success. For a few weeks I took over 100 billion cfu's of probiotics from different probiotic makers. Except from crazy gas, i have actually never felt better.
To sum it all up i think your experiences with valtrex and valcyte will also have to do with what level you are (and probably how long you have been fighting this). A ketogenic diet will work wonders. probiotics are wonderful. If its possible and you are at a stage where you can handle it you need to begin getting exercise as its critical to help fighting off bugs.
here are notes for my dr on everything
Ive seen many specialists
GP
psychologist
allergy doc
sleep doc
endocrinologist
eye doctor
SYMPTOMS
fatigue fatigue fatigue … unrelenting fatigue
General feeling of unwellness. I feel sick… not right. I feel almost drunk or hung over.
some mental confusion and slurring of words sometimes … i sometimes say odd things
headaches but nothing severe. mostly in eyes and temples. I take a lot of alive
Dizziness
grumpiness and moodiness
no muscle or joint pain except My knees ache and my back hurts a lot
insomnia … i wake up 2x a night and never feel rested. I take melatonin or sometimes antihistamine to help. sleep has changed drastically over last 4 years … I used to be able to sleep till 1 in the afternoon and now I wake up at 7 (old age?)
moodiness … grumpiness (tested for low T)
loss of drive
general weekness
eye disturbances … blurry vision … floaters … tired achy eyes
lack of energy to go out or deal with relationships … sex life is ok but its more one night stands.
abnormalities in my blood tests … high killer T
have epstein barr and h6 tested from allergy doc
had low T but I have corrected this .. low Estrogen started 5 years ago … maybe longer but i went to the doctor for strange unrelenting fatigue, brain fog … could have started earlier but i just know it became bothers at some point.
CURRENT STATE
In fairly good shape .. exercise is a job and i force it. I am not debilitated after exercise and feel better
exercise regularly even though Its difficult. 5 - 6x a week now but had crashes in the beginning
Eat well … no processed foods except for protein. Kept diet seems to improve me but no gluten sensitivity.
no alcohol.
no drugs except very rarely may do pot but 4x a year. I have done drugs in college but nothing crazy
tested all glands and regularly tested for STD’s … nothing but high cholesterol. T was slightly low at one point (305) but above low
No Lyme
I went to the endo about 4 or 5 times. each time i would take a break and change some drastic thing in my life. Food, vitamins, ecersize, pills
Food … from a fast food eater to organic, gluten free, ketogenic diet (helped the most)
lost 35 lbs over last year and gained muscle
I have a drawer full of hundreds of supplements. I want to show all my doctors this as proof something is wrong
subbliments i have tried or am taking
argentine (can fuel herpes but i feel better on it)
lysine
colloidal silver
glutamine
mushroom supplements
olive leaf extract
d-ribose
lucene
licorice extract
adderall
Wellbutrin
ZMA
ginko
EB Drops
Liposomal Vit C
Liposomal Curcumins
Fish oil
Valerian Root
Skullcap
allergy doc was the key to me being here today and tested me for cfs markers
Extreme fatigue … always tired. Can barely make it through a day. Mental exercises are difficult
I am able to exercise … I am tired but i have been forcing myself to exercise for 5 years. It takes a lot of will power but I do a lot better now.
Was doing really well … about 60% back to normal and then traveled and got sick
moving aches and pains but nothing major
recent severe fatigue .. unable to get out of bed a few days
I am new here so I thought I would start a thread with my own experiences with cfs and antivirals. Sorry if this is a lot of random unorganized information .... I do not have much time and I am quickly jotting it all down as it may help some. I am now almost into month 3 in which i started first on just valtrex 1G a day and then valcyte 450mg 2x a day about a month later. I take both and stagger each about every 4 hours. For a while i was splitting the valtrex but i got tired of taking so many pills and just take them breakfast, lunch and dinner. These all can interfere with each other so it is good to split them apart. As a side note, I live in NYC and as a precaution I take the new HIV prevention antiviral called PreP/Truvada which prevents contracting HIV should a condom break or I am bad and do something risky. I'm mentioning this just because it is also shown to prevent Herpes related viruses in some studies and i have noticed some improvement after taking this before I even was diagnosed with CFS. More on this below.
so overall these make you feel like crap the first few weeks but eventually that goes away ... I have read a lot of people that throw out the term Herx when they talk about these antivirals but there should be no herx effect. That is not the way these drugs work. There is no die off with antivirals and they just prevent the virus from replicating. These are however poisonous to your body and do make you feel like crap over time.
To start, I will say that I have had CFS (from what i can remember) for about 5 to 6 years. To be honest I did not know it was CFS until about 3 or 4 months ago. I am a 41 year old male and In all honesty I was about to jump on the "low T" bandwagon as I thought this was the cause of my issues as I did have slightly low Testosterone count but not enough to be on replacement therapy.
After fighting through fatigue, weird issues with my eyes, headaches, dizziness, and many other issues for years I spent the last 5 years fighting this without even considering it was CFS. (complete list of symptoms listed below) I was never bedridden and was probably at a scale of 5 or 6 at my worst. I am at an 8 or 9 now.
Finally after getting fed up and visiting 6 different specialists I finally had my allergies checked and this was the DR that suggested CFS. I live in NYC and From there I visited Dr Susan Levine who has an office a few blocks from me. From there I discovered I had an active HHV6, EBV (>600), EBV early antigen (28.2), EBV Nuclear antigen (404), active CMV ... whatever all this means i was told i had a reactivated EBV so thus my journey began on valtrex and then valcyte.
Before I even visited the dr, I had been fighting this on my own with herbals that can fill 2 drawers in my dresser. (Again i will paste below) I actually had some really good results from using herbs through trial and error and and found out that many of these are herbs people use to fight CFS before I even knew I had CFS.
I also compiled a list of notes for my DR which I am going to paste here below and then I will (as time permits) update my post on my status.
I will say that I was already on the road to recovery before I visited Dr levine however i had a severe crash which prompted me to visit her 4 months ago. This crash ended up being walking pneumonia which was also treated. Because of this I am coming out of a double exhaustion phase with both the CFS and pneumonia so its hard to put numbers on how well i felt before and after antivirals (clearing the pneumonia made me feel great) but I can say i am feeling better than i have in 5 years. There is still exhaustion ... after I come home from work I lay down immediately however my headaches and eye issues cleared up after 4 weeks on the valtrex and 2 weeks on valcyte. After 2 months, my sleep just recently became really really good after years of insomnia. My dizziness is about 70% better and my fatigue about 30% better. I am at the gym now 5x a week and actually feeling good. I have amazing bursts of energy i have never had for years. I feel like visiting friends and going out which i have not in years. The dr also put me on low dose vivanse which is basically prescription amphetamine but it really helps me make it through work (i have a high demand sales job in nyc).
I mentioned above that I was already on the road to recovery over the last year. I cant positively link this to Truvada but around the time i started taking this about 1 year ago, I can say that my life slowly became better and i became more active. I forced myself to go to the gym first weekly and then daily. At first I had some crashes after the gym but not even knowing I had CFS i just pushed through all this. Again, I was never bedridden or as bad as some people on here ... I thought I just had low T so i pushed myself harder and harder. The gym became a job a forced myself to do 3x a week and then 5x a week. Obviously this is my personal experience. I know dr's recommend you do not go to the gym until you are in a recovery phase. To me it was the single best thing I did for my recovery over the course of a year.
On a side note, after I was diagnosed i did spend a night googling things like "how i cured my cfs" and I discovered one common theme from a lot of people out there that have bat this. Many changed their gut flora either through diet, antibiotics or probiotics. A year ago I also changed my diet ... my biggest change in my life was that i went on a ketogenic diet (basically a form of atkins / high healthy fat and low carb). I am very careful with sugar. I also supplemented with probiotics. Recently i read articles from 2 separate people who fought this off quickly and dramatically took high doses of probiotics which I copied and also had great success. For a few weeks I took over 100 billion cfu's of probiotics from different probiotic makers. Except from crazy gas, i have actually never felt better.
To sum it all up i think your experiences with valtrex and valcyte will also have to do with what level you are (and probably how long you have been fighting this). A ketogenic diet will work wonders. probiotics are wonderful. If its possible and you are at a stage where you can handle it you need to begin getting exercise as its critical to help fighting off bugs.
here are notes for my dr on everything
Ive seen many specialists
GP
psychologist
allergy doc
sleep doc
endocrinologist
eye doctor
SYMPTOMS
fatigue fatigue fatigue … unrelenting fatigue
General feeling of unwellness. I feel sick… not right. I feel almost drunk or hung over.
some mental confusion and slurring of words sometimes … i sometimes say odd things
headaches but nothing severe. mostly in eyes and temples. I take a lot of alive
Dizziness
grumpiness and moodiness
no muscle or joint pain except My knees ache and my back hurts a lot
insomnia … i wake up 2x a night and never feel rested. I take melatonin or sometimes antihistamine to help. sleep has changed drastically over last 4 years … I used to be able to sleep till 1 in the afternoon and now I wake up at 7 (old age?)
moodiness … grumpiness (tested for low T)
loss of drive
general weekness
eye disturbances … blurry vision … floaters … tired achy eyes
lack of energy to go out or deal with relationships … sex life is ok but its more one night stands.
abnormalities in my blood tests … high killer T
have epstein barr and h6 tested from allergy doc
had low T but I have corrected this .. low Estrogen started 5 years ago … maybe longer but i went to the doctor for strange unrelenting fatigue, brain fog … could have started earlier but i just know it became bothers at some point.
CURRENT STATE
In fairly good shape .. exercise is a job and i force it. I am not debilitated after exercise and feel better
exercise regularly even though Its difficult. 5 - 6x a week now but had crashes in the beginning
Eat well … no processed foods except for protein. Kept diet seems to improve me but no gluten sensitivity.
no alcohol.
no drugs except very rarely may do pot but 4x a year. I have done drugs in college but nothing crazy
tested all glands and regularly tested for STD’s … nothing but high cholesterol. T was slightly low at one point (305) but above low
No Lyme
I went to the endo about 4 or 5 times. each time i would take a break and change some drastic thing in my life. Food, vitamins, ecersize, pills
Food … from a fast food eater to organic, gluten free, ketogenic diet (helped the most)
lost 35 lbs over last year and gained muscle
I have a drawer full of hundreds of supplements. I want to show all my doctors this as proof something is wrong
subbliments i have tried or am taking
argentine (can fuel herpes but i feel better on it)
lysine
colloidal silver
glutamine
mushroom supplements
olive leaf extract
d-ribose
lucene
licorice extract
adderall
Wellbutrin
ZMA
ginko
EB Drops
Liposomal Vit C
Liposomal Curcumins
Fish oil
Valerian Root
Skullcap
allergy doc was the key to me being here today and tested me for cfs markers
Extreme fatigue … always tired. Can barely make it through a day. Mental exercises are difficult
I am able to exercise … I am tired but i have been forcing myself to exercise for 5 years. It takes a lot of will power but I do a lot better now.
Was doing really well … about 60% back to normal and then traveled and got sick
moving aches and pains but nothing major
recent severe fatigue .. unable to get out of bed a few days
