My Valcyte pilgrimage

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OK so I've decided to revive my old Valcyte thread today. The thing is, I'm no longer taking Valcyte so I will probably start a new thread soon.

At any rate, I have a TON of updates. Lots of changes since my last post on here. I have been Valcyte-free since Christmas Day 2013. I have changed my entire approach to treating this condition. I'm now taking TCMs, or Traditional Chinese Medicine herbs in powdered form. You have to make sure the extraction yields a high concentration of the relevant compounds. And you want 100% solubility (i make a tea with them). Specifically, the TCMs I use are:

Baikal chinese skullcap (Scutellaria baicalensis) 30% Baicalin - 15 grams twice a day
Astragalus membranaceus 40% polysacharrides - 15 grams twice a day
Sophora flavescens - 5:1 extract - 6 grams twice a day

I'm also taking other supplements & meds as well. They include:

BHT (Butylated hydroxytoluene) 500 - 1000mg daily
Monolaurin 600mg daily
White Tiger brand Oxymatrine 400 - 600mg daily
St. Johns Wort 600mg daily
Taurine (for heart issues) 6 grams daily
Valtrex 1 gram twice a day
Lysine 1500mg twice a day


The core (and most noticeably effective) part of my treatment is definitely the 3 TCMs. The infection seems to have relocated (or spread) to my heart, although I cannot prove this. But i can FEEL it. And it doesn't feel good at all. Constant pressure and pain on the left side of my chest (ie the heart). I've had numerous tests done by a cardiologist, which yielded nothing. I'm genuinely terrified of what COULD happen to my heart if left untreated. So i'm left to treat this thing on my own (of which like 80% of us are already doing).

Anyways, I just wanted to share with everyone what my regimen is currently. I've tweaked it numerous times, but this seems to be the most effective combination. Getting the right dosage is critical...and tricky. The dosage I've listed above works for me. It may or may not work for you. You just have to tweak and adjust where you see fit.

The heart issues that I have right now are highly alarming for me. The GOOD NEWS is that the astragalus, sophora root and taurine have ALL SORTS of benefits for the heart, heart cells, blood flow, heart rate control, etc, etc. They are my defense system against, what appears to be, a heart infection.

Valcyte is such a toxic drug. I'm so glad that i'm not taking it anymore. Although, I believe it was necessary to reach the level of health I'm at now. So I have no regrets.

Bottom line is, what I have listed up there WORKS for me. It keeps my fatigue down and my energy up. It clears my head and sharpens my focus. It relaxes my mind, body, and heart...all of that WITHOUT ANY VALCYTE and WITHOUT ANY SIDE EFFECTS.

TCMs are the WAY TO GO!! They are natural plants pulled from the earth! The secret is to take high doses. Like between 6 and 15 grams. And to take them in combination. That's the other key. The COMBINED effects make all the difference in the world. And make sure they're standardized or at least have a high extract ratio!!!!!!!

Cheers!!!

OID
 

heapsreal

iherb 10% discount code OPA989,
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OK so I've decided to revive my old Valcyte thread today. The thing is, I'm no longer taking Valcyte so I will probably start a new thread soon.

At any rate, I have a TON of updates. Lots of changes since my last post on here. I have been Valcyte-free since Christmas Day 2013. I have changed my entire approach to treating this condition. I'm now taking TCMs, or Traditional Chinese Medicine herbs in powdered form. You have to make sure the extraction yields a high concentration of the relevant compounds. And you want 100% solubility (i make a tea with them). Specifically, the TCMs I use are:

Baikal chinese skullcap (Scutellaria baicalensis) 30% Baicalin - 15 grams twice a day
Astragalus membranaceus 40% polysacharrides - 15 grams twice a day
Sophora flavescens - 5:1 extract - 6 grams twice a day

I'm also taking other supplements & meds as well. They include:

BHT (Butylated hydroxytoluene) 500 - 1000mg daily
Monolaurin 600mg daily
White Tiger brand Oxymatrine 400 - 600mg daily
St. Johns Wort 600mg daily
Taurine (for heart issues) 6 grams daily
Valtrex 1 gram twice a day
Lysine 1500mg twice a day


The core (and most noticeably effective) part of my treatment is definitely the 3 TCMs. The infection seems to have relocated (or spread) to my heart, although I cannot prove this. But i can FEEL it. And it doesn't feel good at all. Constant pressure and pain on the left side of my chest (ie the heart). I've had numerous tests done by a cardiologist, which yielded nothing. I'm genuinely terrified of what COULD happen to my heart if left untreated. So i'm left to treat this thing on my own (of which like 80% of us are already doing).

Anyways, I just wanted to share with everyone what my regimen is currently. I've tweaked it numerous times, but this seems to be the most effective combination. Getting the right dosage is critical...and tricky. The dosage I've listed above works for me. It may or may not work for you. You just have to tweak and adjust where you see fit.

The heart issues that I have right now are highly alarming for me. The GOOD NEWS is that the astragalus, sophora root and taurine have ALL SORTS of benefits for the heart, heart cells, blood flow, heart rate control, etc, etc. They are my defense system against, what appears to be, a heart infection.

Valcyte is such a toxic drug. I'm so glad that i'm not taking it anymore. Although, I believe it was necessary to reach the level of health I'm at now. So I have no regrets.

Bottom line is, what I have listed up there WORKS for me. It keeps my fatigue down and my energy up. It clears my head and sharpens my focus. It relaxes my mind, body, and heart...all of that WITHOUT ANY VALCYTE and WITHOUT ANY SIDE EFFECTS.

TCMs are the WAY TO GO!! They are natural plants pulled from the earth! The secret is to take high doses. Like between 6 and 15 grams. And to take them in combination. That's the other key. The COMBINED effects make all the difference in the world. And make sure they're standardized or at least have a high extract ratio!!!!!!!

Cheers!!!

OID

@OnlyInDreams
How are you doing on the TCH combo.
They are quite large doses. Do u just buy bulk powders?

Cheers
 

MadeleineKM

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Well this is my first thread since I started my Valcyte treatment. For the first 3 months, I didn't really notice any improvement. And fortunately, I didn't get worse either. It wasn't until about 2 weeks ago that I started to notice a difference. It seems to be a subtle, gradual improvement.



I got sick in October 2010. So it has been almost 2 years now. Dr. Lerner diagnosed me with a CMV (cytomegalovirus) persistent (active) infection. He says that's the only virus causing my cfs. My titers were very high for CMV. The normal range for CMV antibody titers is 0 - 18 and my titer was 107! He made it very clear to me that CMV is causing my cfs. If you have high titers to CMV or HHV6 and you have CFS symptoms, then you're likely a good candidate for Valcyte. Another key indicator is tachycardia. Hope this helps!
. This was interesting! Are you both igm and igg positive or just one of them?
 

RUkiddingME

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Thanks RUkiddingME! Yes, I definitely noticed improvement between month 12 and 18. I would say month 12 - 15 I noticed that my fatigue level would still fluctuate, albeit mildly. But as the months wore on, month 16, 17, 18, I barely noticed any fatigue at all! Unless of course I didn't get enough sleep the night before.

Before Valcyte I was miserable. I couldn't exercise at all. And if I did exercise, I would have trouble breathing! I remember going to bed after jogging, and I would wake up several times in the middle of the night because I wasn't breathing enough air! I felt light headed and terrified. My heart rate was out of control frequently. I felt physical pain in my heart! My voice trembled and I sounded lethargic. Conversations were frustrating because I had to focus so intensely on what was said because of the thick fog in my brain. And it would take me forever to process what was said no matter how hard I focused. I couldn't concentrate. I never had the energy to do anything fun. So after a while my friends would stop calling me because they knew I wouldn't come out. I had just enough energy to get through the work day. I worked 12 hour shifts back then. That's difficult to do even without CFS. I have no idea how I survived so many of those 12 hour shifts with CFS. Literally, I don't know how I did it. I was a zombie sitting in a chair. My lunch break was essentially nap time everyday. That helped a little. My ears would ring randomly and often. Everything was dimmer. As if I were wearing sunglasses everyday. I had trouble sleeping, never felt refreshed after sleeping up to 11 hours straight. I was an absolute mess. 2011 was the worst year of my life to date.

After Valcyte, to sum it up quite simply, All of the symptoms listed above disappeared! ALL of them.

If I were you, I would absolutely stay on Valcyte for an additional 6 months. Since you are a severe case, you probably need those 6 months more than I did! And make sure that you stay on LDN. Don't stop taking that.

I hope I improve after stopping Valcyte. That would be icing on the cake! Now that I have the cake, why not eat it too!?!? I think that stopping Valcyte alone will actually give me a boost of energy as long as I'm on Famvir. Valcyte itself can cause fatigue and lethargy.

OID
Thanks so much!!! I can't believe I had missed this post
 
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Yes, I'm doing ok with Valcyte. Valcyte is keeping me afloat. Far from perfect, but definitely manageable & tolerable. I'm also taking lots of supplements like Lauricidin, MCT Oil, Milk Thistle and Bile Acid. All of these things have contributed greatly to my improved health. I'm still waiting for the day when Brincidofovir becomes FDA approved & released to the general public. That will be a day of celebration.
 

cb2

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@OnlyInDreams is your heart feeling better? how much valcyte are you taking? I have only EBV and HSV 1 titers and one of the PAs at stanford suggested Valcyte.. but it will be a very small dose and try to work my way up. starting at 50ml. years ago i tried the standard dose 450 x2 day? is that it? and i got really sick.
 

Biarritz13

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Yes, I'm doing ok with Valcyte. Valcyte is keeping me afloat. Far from perfect, but definitely manageable & tolerable. I'm also taking lots of supplements like Lauricidin, MCT Oil, Milk Thistle and Bile Acid. All of these things have contributed greatly to my improved health. I'm still waiting for the day when Brincidofovir becomes FDA approved & released to the general public. That will be a day of celebration.
Good to hear OnlyInDreams!

Are you back to your previous baseline when you were on it?
 
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@OnlyInDreams is your heart feeling better? how much valcyte are you taking? I have only EBV and HSV 1 titers and one of the PAs at stanford suggested Valcyte.. but it will be a very small dose and try to work my way up. starting at 50ml. years ago i tried the standard dose 450 x2 day? is that it? and i got really sick.
My heart feels better, but every now and then I will feel mild pain/tightness in my chest. I've reduced my Valcyte dose to 450mg/day due to elevated ALT. Did you mean 50mg instead of 50ml?

Well, the standard does is 900mg 1x/day. But you can split the daily dose if you prefer. I felt sick for the first few weeks on Valcyte. After that, I've felt fine ever since. I'm just hoping that 450mg 1x/day will be enough to sustain my gains. Because that dose will be a relief for my liver & also my wallet. So far so good, provided I get enough sleep.

I'm also taking a tablespoon of MCT oil in the morning and 2 teaspoons of Huang Qin (skullcap) at night. Very noticeable difference when i take those with Valcyte.

Brincidofovir can't get here soon enough...

Good to hear OnlyInDreams!

Are you back to your previous baseline when you were on it?
Yeah, I would say that my brain fog is under control. But if don't get enough sleep, then I will struggle throughout the day. Coffee helps!
 

cb2

Senior Member
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@OnlyInDreams I am glad your heart it doing better! that must be a relief. Oh yes i did mean 50mg. maybe it isn't even worth it.

in what ways did you feel "sick" when you started valcyte? also I wonder if Milk thistle might help lower your liver enzymes?
what do you notice when you take MCT oil and Skullcap?
thank you
 
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@OnlyInDreams I am glad your heart it doing better! that must be a relief. Oh yes i did mean 50mg. maybe it isn't even worth it.

in what ways did you feel "sick" when you started valcyte? also I wonder if Milk thistle might help lower your liver enzymes?
what do you notice when you take MCT oil and Skullcap?
thank you
Yeah chest pain is always a bit scary. 50mg is a very small amount. But if you're body is having trouble tolerating the Valcyte, then it might be best to start with a small dose like that.

When I started Valcyte, I had flu like symptoms such as aches & pains, and sweating. I may have even had a fever, I didn't check my temp though. I take lots of liver supplements as well. It's difficult to gauge the proper amount though. Basically, if I feel pain on the right side of my chest then I increase my liver supplementation. MCT oil and Skullcap boost the immune system and have antiviral effects. I just feel healthier when on MCT and skullcap. Hard to describe/explain.

Hope this helps.

OID