Poll The Fibromyalgia Herpesvirus Testing Poll

[Cort]

Almost nobody associated herpesviruses with fibromyalgia before Dr. "Skip" Pridgen announced he was having excellent results treating FM with antivirals. Pridgen is confident he's gotten at heart of FM (and ME/CFS) and is continuing on with Phase III trials using his unique antiviral combination.

Which brings up the question who's been tested for herpesviruses? If you have FM - have you ever been tested for herpesvirus activation? If so, tell us the results ....

For more on Dr. Pridgen

• Dr. Pridgen on Doses, Fixing Broken Bodies and Why the Next Fibromyalgia Trials Will Be Better
• Drug Combo in Pridgen Antiviral Fibromyalgia Trial Identified – Some Results Available
• Brief Report From Dr. Prigden on the Fibromyalgia Antiviral Trial – and the Future Chronic Fatigue Syndrome One
• Big Antiviral Trial Could Usher in New Treatment Era for Fibromyalgia

 

[Diane in Western New York]

Since 1966, I had suffered from a rash (pustules) on my feet and legs that would appear between October and January, lasting until May. It always appeared in the same spots each year, but as the years went by, the areas expanded. It was very itchy and painful. I was diagnosed with dermatitis of unknown origin by an allergist, dermatologist and several primary care doctors. I tried many prescription medications which helped minimally. I also went through a winter in sandals to prove it was not my shoes or winter boots.

In 2005 my husband had shingles in his eye. In reading about that virus, I began to suspect that my “rash” might be viral. I spoke to my PCP about it. It always began with tingling in the same areas and progressed to pustules with clear fluid. It was itchy and then painful. When it appeared again in early 2007, I was tested for the presence of viruses, and yes, the blood tests showed I had a herpes virus and I was put on Valtrex for one week. The “rash” began to disappear within 12 hours and was gone within the week. While on the Varltrex, I felt better than I had for decades. Besides clearing the “rash”, my nasal stuffiness was much improved, I slept better and had lots of extra energy. The effects lasted for several months and the rash did not return for the 2007-8 season. It did return once in 2009, once in 2010, once in 2012, once in 2013 and once in 2014. When it returns, it now appears on my head as well as my feet. I now keep Valtrex on hand to take as soon as the symptoms return and take L-Lysine most of the time. When the tingling and itching starts, I raise the dosage of L-Lysine and that usually stops it. But in spring and fall, when my allergies are the worst, or if I am ill with a cold etc., then I spend a week on Valtrex, and that takes care of it. My PCP thought about putting me on a small dosage of Valtrex all the time, but she wanted to maintain it's effectiveness long-term, so we opted for using L-lysine daily, varying the amount by my symptoms and then taking the high dose of Valtrex for a week if it got out of hand. Works for me. It helped, but it did not cure my FMS. I still experience a lot of pain from my arthritis and MPS.

 

[Cort]

Since 1966, I had suffered from a rash (pustules) on my feet and legs that would appear between October and January, lasting until May. It always appeared in the same spots each year, but as the years went by, the areas expanded. It was very itchy and painful. I was diagnosed with dermatitis of unknown origin by an allergist, dermatologist and several primary care doctors. I tried many prescription medications which helped minimally. I also went through a winter in sandals to prove it was not my shoes or winter boots.

In 2005 my husband had shingles in his eye. In reading about that virus, I began to suspect that my “rash” might be viral. I spoke to my PCP about it. It always began with tingling in the same areas and progressed to pustules with clear fluid. It was itchy and then painful. When it appeared again in early 2007, I was tested for the presence of viruses, and yes, the blood tests showed I had a herpes virus and I was put on Valtrex for one week. The “rash” began to disappear within 12 hours and was gone within the week. While on the Varltrex, I felt better than I had for decades. Besides clearing the “rash”, my nasal stuffiness was much improved, I slept better and had lots of extra energy. The effects lasted for several months and the rash did not return for the 2007-8 season. It did return once in 2009, once in 2010, once in 2012, once in 2013 and once in 2014. When it returns, it now appears on my head as well as my feet. I now keep Valtrex on hand to take as soon as the symptoms return and take L-Lysine most of the time. When the tingling and itching starts, I raise the dosage of L-Lysine and that usually stops it. But in spring and fall, when my allergies are the worst, or if I am ill with a cold etc., then I spend a week on Valtrex, and that takes care of it. My PCP thought about putting me on a small dosage of Valtrex all the time, but she wanted to maintain it's effectiveness long-term, so we opted for using L-lysine daily, varying the amount by my symptoms and then taking the high dose of Valtrex for a week if it got out of hand. Works for me. It helped, but it did not cure my FMS. I still experience a lot of pain from my arthritis and MPS.

That's really interesting - so your PCP believes that if you go on Valtrex long term the effects will diminish? Did you know that Dr. Lerner and Dr. Montoya use long term valtrex in ME/CFS? They've found that long term Valtrex is the only thing that really works for most people.

 

[Who Me?]

@Cort don't you mean Valcyte?

 

[Ruth Efird]

I have had FM and CFS since 1999. Got so bad in Oct, 2014 I had to quit part time job. My doctor tested me for viruses and I was positive for EBV, CMV, and parvo B19, neg for HSV 1 and 2. I was started on acyclovir 800 mg tid on March 23, and after fever, worse pain, and fatigue for first week I have improved so much in 5 weeks!!! I did not take any NSAIDs, but am on lots of supplements, auto immune diet, and sleep 10-12 hours per day. It is the best I have felt in a long time. However I dread getting off of acyclovir because of your last comments. I do have a very acid urine (pH 5.0-5.4), and my dentist says my saliva is very acidic and is causing cavities in crowns (unusual). But no renal stones. I drink a gallon of distilled water a day, and rinse with baking soda 4 times a day to help my saliva.

 

[Folk]

Never been tested to it.
No doctor suggested here in Brazil. And when Dr. Enlander suggested via skype it was HHV6 aaaand we don't have that test here

But even in healthy people don't we find it in almost everyone?

 

[Who Me?]

@Folk True most people will test positive for lots of viruses. But what I have to explain to my doctor is that you have to take positive lab results which everyone might have in conjunction with everything else, how sick I am, how crap I feel, other labs etc.

If Enlander is willing to RX antivirals then I'd go for it since I've also been told there could be some viruses at play we aren't aware of.

The key with treating us is to attack from all ends.

 

[Cort]

@Cort don't you mean Valcyte?

It's both actually. Lerner uses Valtrex a lot I believe....

 

[Katie]

I tested (+) for HHV6 and c-pneumonia. I've been on valtrex twice but not for more than 4-5 weeks each time. In June (after nephew's wedding) I'm going back on valtrex for a few months as I've read many research papers and certainly through Cort's blog that long-term therapy, at least 6 months is necessary to stop the virus duplicating and wrecking havoc.
I'd be interested in hearing more about Dr. Pridgen's 3rd phase trials when there are results, on the celebrex/anti-viral combo. Unfortunately for me I've never been able to take NSAIDS-I get tinnitus and horrible stomach pain.

 

[Cort]

Never been tested to it.
No doctor suggested here in Brazil. And when Dr. Enlander suggested via skype it was HHV6 aaaand we don't have that test here

But even in healthy people don't we find it in almost everyone?

Montoya used high antibodies plus ME/CFS symptoms as a filter for antiviral treatment.

 

[Diane in Western New York]

That's really interesting - so your PCP believes that if you go on Valtrex long term the effects will diminish? Did you know that Dr. Lerner and Dr. Montoya use long term valtrex in ME/CFS? They've found that long term Valtrex is the only thing that really works for most people.

That was her fear at the time. Yes, I have since become aware of their long-term antiviral therapy and my PCP has since closed her practice. I believe that she mentioned the long-term dosages as being smaller than the amount she prescribed for me for a week. I have thought about discussing it with my new PCP to get his opinion. In effect, I take L-Lysine on a daily basis. When I did the research on herpes infections in the eye, I ran across research on the antiviral effectiveness of L-Lysine when it is taken first thing in the morning on an empty stomach. It really does work for me most of the time. Because the outbreaks always come back to the same spots, it is now easy to be aware when it is re-activating. When that happens, I increase the amount of L-Lysine I am taking until the symptoms stop. Most of the time that works. The L-Lysine is cheaper and easier to get than Valtrex. No prescription is needed. After awhile, I back down the dosage. If the activity resumes, then I raise the dosage again until it stops again and try backing off later. Sometimes, I can completely stop taking it during the summer months, but for the last two years, I have had to maintain a daily minimal dosage even in the summer. It not only keeps the herpes virus at bay, but I hardly ever suffer from colds and flu. Usually, about once a year, when my immune system is especially stressed by my multiple allergies and/or viruses, I do have to add the Valtrex, and that controls it in a matter of hours and the effect lasts for some time. One of my pharmacists has the same problem and that is what she does too.

 

[Katie]

That was her fear at the time. Yes, I have since become aware of their long-term antiviral therapy and my PCP has since closed her practice. I believe that she mentioned the long-term dosages as being smaller than the amount she prescribed for me for a week. I have thought about discussing it with my new PCP to get his opinion. In effect, I take L-Lysine on a daily basis. When I did the research on herpes infections in the eye, I ran across research on the antiviral effectiveness of L-Lysine when it is taken first thing in the morning on an empty stomach. It really does work for me most of the time. Because the outbreaks always come back to the same spots, it is now easy to be aware when it is re-activating. When that happens, I increase the amount of L-Lysine I am taking until the symptoms stop. Most of the time that works. The L-Lysine is cheaper and easier to get than Valtrex. No prescription is needed. After awhile, I back down the dosage. If the activity resumes, then I raise the dosage again until it stops again and try backing off later. Sometimes, I can completely stop taking it during the summer months, but for the last two years, I have had to maintain a daily minimal dosage even in the summer. It not only keeps the herpes virus at bay, but I hardly ever suffer from colds and flu. Usually, about once a year, when my immune system is especially stressed by my multiple allergies and/or viruses, I do have to add the Valtrex, and that controls it in a matter of hours and the effect lasts for some time. One of my pharmacists has the same problem and that is what she does too.

Hi Diane: what is the dosage of L-Lysine you take? I'm taking a slew of supplements including acetyl-L-carnitine, ubiquinol but nothing seems to help with my exhaustion. I think I'll add L-Lysine and see if that helps.

 

[Diane in Western New York]

Hi Diane: what is the dosage of L-Lysine you take? I'm taking a slew of supplements including acetyl-L-carnitine, ubiquinol but nothing seems to help with my exhaustion. I think I'll add L-Lysine and see if that helps.

The minimum amount I take is 500 mg. That is like a maintenance dose. When the virus appears to become active again, I raise it by 500 mg doses each day until the outbreak goes away. Usually it does retreat. The most I take daily before resorting to the Valtrex is 5000 mg. The most important thing is to take it all at once first thing in the morning and wait to eat or take anything for at least 30 minutes to an hour. If you take it with other things or food, it will be used in the building of cell walls and will lose the antiviral quality.

To help with energy, I have found Inositol to be helpful. That is one that you can take daily with your other supplements and/or food. You take 500 or 650 mg for a few days and then add another 500 or 650 mg (1000-1300 total all at once) until you reach the 2000 + mg/day level. By that time you should notice a significant boost in energy. If you don't, it is probably not going to help you. If you begin to see a difference, keep gradually adding to the dosage until you get to the level where you no longer experience additional benefit, and then back off to the previous level and stay there. The benefits are short lived, as in medications that you have to take 3 times a day, so you may find that a second lesser dosage protocol in the afternoon will benefit you. My maintenance dosage right now is 2600mg in the morning and 1950 mg in the afternoon. I have to make sure I take that afternoon dosage before 6 pm, or I have trouble going to sleep at night. My experience with this protocol is on the low side. I know people who take double what I do for the same effect, but it really works wonders if it works for you. This protocol was developed by a doctor and I heard about it in a support group and checked it out. I swear by it. Hope this helps.

 

[rdakar]

I tested positive for HSV1 & 2. My doctors, however, did not link it to my ME or FM. Since I have never had any outbreaks of herpes, no one suggested that I take Valtrex. Should I take it? Will it make a difference?

 

[Katie]

The minimum amount I take is 500 mg. That is like a maintenance dose. When the virus appears to become active again, I raise it by 500 mg doses each day until the outbreak goes away. Usually it does retreat. The most I take daily before resorting to the Valtrex is 5000 mg. The most important thing is to take it all at once first thing in the morning and wait to eat or take anything for at least 30 minutes to an hour. If you take it with other things or food, it will be used in the building of cell walls and will lose the antiviral quality.

To help with energy, I have found Inositol to be helpful. That is one that you can take daily with your other supplements and/or food. You take 500 or 650 mg for a few days and then add another 500 or 650 mg (1000-1300 total all at once) until you reach the 2000 + mg/day level. By that time you should notice a significant boost in energy. If you don't, it is probably not going to help you. If you begin to see a difference, keep gradually adding to the dosage until you get to the level where you no longer experience additional benefit, and then back off to the previous level and stay there. The benefits are short lived, as in medications that you have to take 3 times a day, so you may find that a second lesser dosage protocol in the afternoon will benefit you. My maintenance dosage right now is 2600mg in the morning and 1950 mg in the afternoon. I have to make sure I take that afternoon dosage before 6 pm, or I have trouble going to sleep at night. My experience with this protocol is on the low side. I know people who take double what I do for the same effect, but it really works wonders if it works for you. This protocol was developed by a doctor and I heard about it in a support group and checked it out. I swear by it. Hope this helps.

Thank you for taking the time to explain L-Lysine and Inositol, I'll give both a try. I'll let you know how it goes

 

[Diane in Western New York]

I tested positive for HSV1 & 2. My doctors, however, did not link it to my ME or FM. Since I have never had any outbreaks of herpes, no one suggested that I take Valtrex. Should I take it? Will it make a difference?

If you have an active herpes virus in your blood, it IS an outbreak and it IS effecting you, usually by draining your energy as your body fights the infection. You could ask your doctor for a prescription to try it. It may make a difference, but there is no guarantee. Also, some people have bad reactions to taking antiviral medications. You have to decide whether it is worth trying, and your doctor has to agree.