My Valcyte pilgrimage

[Ruthie24]

Thanks so much for sharing all the positive valcyte stories here. It's very encouraging to read them all!

@Only inDreams-Curious what other things you have done to support your immune system. I saw the milk thistle and LDN. Which vitamin B supplements are you taking?

@CBS- you mentioned you were doing lots of things before taking valcyte. Would you be willing to share some of those things ideas?

 

[OnlyInDreams]

Thanks so much for sharing all the positive valcyte stories here. It's very encouraging to read them all!

@Only inDreams-Curious what other things you have done to support your immune system. I saw the milk thistle and LDN. Which vitamin B supplements are you taking?

Ruthie, basically I'm just taking airborne and a Multivitamin for my Immune system. For Vitamin B, I just take Swanson premium brand Multi and Spring Valley B-12. I eat lots of fruits and vegetables, especially kale and spinach.

 

[SOC]

Ruthie24
FWIW, I took these two NK cell supporting products (not both at the same time) while I was taking Valcyte.
https://www.prohealth.com/shop/product.cfm/product__code/PH170
http://www.iherb.com/Paradise-Herbs-ORAC-Energy-Greens-12-8-oz-364-g/10731

I did not have immune tests before I started Valcyte, but at the end of my Valcyte treatment, my NK cell function was high normal. My CD-8 counts were low, though --- another immune abnormality known in ME/CFS.

We don't know if the supplements improved my NK cell function or if it was never bad because I don't have pre-supplement immune data to compare to. Still, if you're looking to support NK cell function, they might be worth a try.

 

[Ruthie24]

Thank you that info.
@SOC- do the "greens" really taste ok? Looks like a great way to get the nutrients if I can get them past my taste buds. LOL

 

[SOC]

Thank you that info.
@SOC- do the "greens" really taste ok? Looks like a great way to get the nutrients if I can get them past my taste buds. LOL

Well, they taste like greens -- ya know, kinda like grass. I mix the powder with vanilla soy milk and ice and it's okay. My daughter, OTOH, would never drink it. For her I buy the capsule form. You have to take 8 pills per day for a full "dose", but you don't have to taste the powder. I take capsule form when I'm not up for mixing or drinking the powder.

 

[OnlyInDreams]

So I've been on Valcyte for 13 months and 2 weeks. How do I feel? Light years ahead of where I was before I started treatment. Dozens of symptoms have vanished, but a few still linger. Namely, mild fatigue & low energy. Both of which fluctuate between mild and non-existent.

2 things I wanted to point out that I attribute to my recovery:

1) I'm taking LDN 3mg nightly now. I've been on it pretty consistently for about 1 1/2 months. That seems to be the optimal dose for me. I've noticed that my immune system doesn't switch into high gear the next day when I take LDN at that dose, which translates into little or no fatigue. However, that effect doesn't last the entire day. I wanna quote an article I read about LDN:

"LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells may be chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation."

Most people I'm sure have read this already, but in case you haven't here is the link to the LDN article:

http://phoenixrising.me/treating-cf...-and-immunemodulators/ldn-low-dose-naltrexone


2) I'm taking Bayer Aspirin to reduce the effects of hypercoagulation. I've observed that when the nurse draws my blood, she often times will have difficulty drawing it. And it's not because she couldn't find a proper vein. It's because of hypercoagulation! Here is an interesting article on the topic:

​

http://www.anapsid.org/cnd/diffdx/hypercoagulation.html​

​

2 main points from the article:​

• "Viruses and bacteria may be hidden under the fibrin layer coating the vessel walls (directly caused by hypercoagulation), essentially hiding them from antibiotic and antiviral treatments."

"Some of the symptoms associated with hypercoagulation will surprise few with CFS and/or FM: brainfog, cognitive dysfunction, digestion problems, fatigue, and generalize malaise."


At this point, I'm not sure how much more I can improve with the Valcyte. I mean it has been 13 months and I almost feel like I've plateaued from a Valcyte perspective. But from an LDN perspective, I think I have more room for improvement! This is just what I've gleaned from listening to my body and my attempts at understanding how it's responding to each med. But I get the feeling that when I take LDN 3mg at night, it honestly does seem to shutdown the 'sickness response' that produces fatigue! I'm hoping that overtime, this effect will last even longer than it currently does.

 

[RUkiddingME]

So I've been on Valcyte for 13 months and 2 weeks. How do I feel? Light years ahead of where I was before I started treatment. Dozens of symptoms have vanished, but a few still linger. Namely, mild fatigue & low energy. Both of which fluctuate between mild and non-existent.

2 things I wanted to point out that I attribute to my recovery:

1) I'm taking LDN 3mg nightly now. I've been on it pretty consistently for about 1 1/2 months. That seems to be the optimal dose for me. I've noticed that my immune system doesn't switch into high gear the next day when I take LDN at that dose, which translates into little or no fatigue. However, that effect doesn't last the entire day. I wanna quote an article I read about LDN:

"LDN appears to effect the functioning of the regulatory immune cells in the central nervous system called microglial cells. Upon activation by infection or cell damage micoglial cells produce pro-inflammatory cytokines, reactive oxygen species (free radicals) and nitric oxide. Microglial cells may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection. Some researchers believe that microglial cells may be chronically turned on in ME/CFS and fibromyalgia. LDN appears to block a receptor on the microglial cells thus inhibiting their activation."

Most people I'm sure have read this already, but in case you haven't here is the link to the LDN article:

http://phoenixrising.me/treating-cf...-and-immunemodulators/ldn-low-dose-naltrexone


2) I'm taking Bayer Aspirin to reduce the effects of hypercoagulation. I've observed that when the nurse draws my blood, she often times will have difficulty drawing it. And it's not because she couldn't find a proper vein. It's because of hypercoagulation! Here is an interesting article on the topic:

​

http://www.anapsid.org/cnd/diffdx/hypercoagulation.html​

​

2 main points from the article:​

• "Viruses and bacteria may be hidden under the fibrin layer coating the vessel walls (directly caused by hypercoagulation), essentially hiding them from antibiotic and antiviral treatments."

"Some of the symptoms associated with hypercoagulation will surprise few with CFS and/or FM: brainfog, cognitive dysfunction, digestion problems, fatigue, and generalize malaise."


At this point, I'm not sure how much more I can improve with the Valcyte. I mean it has been 13 months and I almost feel like I've plateaued from a Valcyte perspective. But from an LDN perspective, I think I have more room for improvement! This is just what I've gleaned from listening to my body and my attempts at understanding how it's responding to each med. But I get the feeling that when I take LDN 3mg at night, it honestly does seem to shutdown the 'sickness response' that produces fatigue! I'm hoping that overtime, this effect will last even longer than it currently does.

I am thrilled that you are doing so well!!! I too noticed the difference on Valcyte at week 13. I had an initial improvement 2.5 months ago but have had no continued improvement, still mostly housebound, can't go for walks yet but still a huge improvement from being bed ridden most of the time. I'm glad you are liking the effects of LDN. It was a life changer for me when I started it over a year ago at which point I had been completely bed ridden for a full 9 months. I noticed an almost immediate response to the LDN, less fatigue and stiffness. I could go down stairs standing up! Like you I settled on the 3 mg even though I was prescribed 4.5 mg. Just seem to do better on that dose. Wow that anti coagulation thing is interesting stuff!! Would love to get tested for that someday, my veins are getting progressively non existing but like you say it might not be a vein issue at all! Best of luck to you and thanks for the updates! ))

 

[OnlyInDreams]

Time for an update (which is really just me rambling, lol)! My last post was in June (wow, that long ago?). So I have been on Valcyte for exactly 18 months! I made it to the Valcyte finish line!!!!!!

The first 9 months I was on 1350mg daily, then I reduced it to 900mg daily for the last 9 months. I am in the process of transitioning from Valcyte to Famvir. I'm trying to convince my doctor, but he is balking a bit. He is going to speak to a specialist and then get back to me later.

So in the mean time, does anyone have any spare Famvir that they could offer to me? I would be infinitely grateful!! Just enough to hold me over until my doctors come to some kind of agreement?

I absolutely want to get off the Valcyte ASAP. I think my body is ready to make the switch to Famvir. I think my Liver is ready for the switch as well!!!!!!! I didn't even bother to get a CMV IgG quantity lab done this time. I'm realizing that the titer levels are not a true gauge for improvement. It only indicates that the infection is active.

On one hand, I am excited at the thought of finally going off Valcyte. All of the nasty side effects of Valcyte, gone forever. On the other hand, I am a bit terrified. What if i relapse despite being on Famvir?? I would rather suppress that thought because it is so terrifying.

As far as my CFS symptoms go at this point, I feel focused and pretty energized overall. I don't think that I could gain any additional benefit from being on Valcyte at this point other than to sustain the progress that I've already made. And I’m ok with that. I do have my life back. I am quite content with the progress I've made. Now the goal is to sustain it!!!!

OID

 

[RUkiddingME]

Congrats on reaching the finish line!!!! That's awesome!! Did you notice much improvement between month 12 and 18? I am on month 10 of Valcyte and somehow doubt my specialist is going to leave me on more than 12. Would you mind sharing your level of functioning before and after the Valcyte I.e.Are you able to walk, work etc ? I guess everyone starting Valcyte start at different levels of functioning. I was considered a severe case, completely bedridden, wheelchair etc and after 10 months on this life saving stuff I am able to walk about 250 steps in a row on a good day and drive a car for short distances. I don't know how much better it's going to get and I am thrilled at the progress I have made so far, but would hate to think an extra six months of Valcyte could give me some independence back and maybe even ditch the wheelchair completely and not get a chance at it. Best of luck to you and so happy it gave you your life back!!! I hear some people even improve some more after stopping it

 

[OnlyInDreams]

Congrats on reaching the finish line!!!! That's awesome!! Did you notice much improvement between month 12 and 18? I am on month 10 of Valcyte and somehow doubt my specialist is going to leave me on more than 12. Would you mind sharing your level of functioning before and after the Valcyte I.e.Are you able to walk, work etc ? I guess everyone starting Valcyte start at different levels of functioning. I was considered a severe case, completely bedridden, wheelchair etc and after 10 months on this life saving stuff I am able to walk about 250 steps in a row on a good day and drive a car for short distances. I don't know how much better it's going to get and I am thrilled at the progress I have made so far, but would hate to think an extra six months of Valcyte could give me some independence back and maybe even ditch the wheelchair completely and not get a chance at it. Best of luck to you and so happy it gave you your life back!!! I hear some people even improve some more after stopping it

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

 

[SOC]

Congrats on reaching the finish line!!!! That's awesome!! Did you notice much improvement between month 12 and 18? I am on month 10 of Valcyte and somehow doubt my specialist is going to leave me on more than 12. Would you mind sharing your level of functioning before and after the Valcyte I.e.Are you able to walk, work etc ? I guess everyone starting Valcyte start at different levels of functioning. I was considered a severe case, completely bedridden, wheelchair etc and after 10 months on this life saving stuff I am able to walk about 250 steps in a row on a good day and drive a car for short distances. I don't know how much better it's going to get and I am thrilled at the progress I have made so far, but would hate to think an extra six months of Valcyte could give me some independence back and maybe even ditch the wheelchair completely and not get a chance at it. Best of luck to you and so happy it gave you your life back!!! I hear some people even improve some more after stopping it

I was in about the same place as you when I started Valcyte. Now I'm able to drive short distances, walk around the house or in convenience stores, and work at a very easy sedentary job 3-4 hrs a day. I would say the biggest improvement with Valcyte for me came between 6 and 12 months, but I continued to improve (although slowly) for another 6-12 months. By 24 months I had definitely plateaued.

I haven't been able to ditch the wheelchair for longer distances, but this is still TONS better than being bedbound, unable to read, and generally useless.

I'd push for another 6 months of Valcyte (assuming your neutrophils and liver function are still okay) although I wouldn't expect a huge improvement in the additional 6 months. You want to get that HHV6 or CMV knocked back good and hard before you stop the Valcyte. You might also want to consider taking Valtrex or Famvir long-term to keep all the herpesviruses suppressed since most of us have trouble with that. What's the point of taking the Valcyte for a year or more if you're going to let it start reactivating again?

 

[SOC]

I'm seeing more and more cases where people with mild ME/CFS (meaning they were still able to work, not that they weren't miserable) are getting full recovery with aggressive antiviral therapy. My daughter was mild-moderate and is now fully functional (and no PEM), with some symptomatic treatments, after 20 months of Valcyte and ongoing Valtrex.

It seems that those of us that were moderate-severe, or were sick much longer before AV treatment, are seeing significant improvements but not recovery or full functionality. But maybe I'm wrong.

 

[RUkiddingME]

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

Thank you so much for taking the time to write all of this, I really really appreciate it!!! I will try to convince my Dr. To leave me on it. My NK cells doubled in 4 months and if they went up again when I get tested next week maybe that will convince him. Valcyte just went generic here in Canada and hope I get the same effect from it. Again thank you, you've been most helpful and enjoy your new life!!!!

 

[RUkiddingME]

I was in about the same place as you when I started Valcyte. Now I'm able to drive short distances, walk around the house or in convenience stores, and work at a very easy sedentary job 3-4 hrs a day. I would say the biggest improvement with Valcyte for me came between 6 and 12 months, but I continued to improve (although slowly) for another 6-12 months. By 24 months I had definitely plateaued.

I haven't been able to ditch the wheelchair for longer distances, but this is still TONS better than being bedbound, unable to read, and generally useless.

I'd push for another 6 months of Valcyte (assuming your neutrophils and liver function are still okay) although I wouldn't expect a huge improvement in the additional 6 months. You want to get that HHV6 or CMV knocked back good and hard before you stop the Valcyte. You might also want to consider taking Valtrex or Famvir long-term to keep all the herpesviruses suppressed since most of us have trouble with that. What's the point of taking the Valcyte for a year or more if you're going to let it start reactivating again?

Thanks SOC!! Boy we sound very similar in our functioning ability!! I had to push to get an extra six months already , seems Dr. Kogelnik doesn't necessarily use it long term on his patients like say Dr. Lerner does. I have been having problems with my pancreas but no one is placing the blame on the Valcyte. Lipase is not a test usually ordered when on Valcyte. It was just a fluke that mine was checked and sure enough has been fluctuating since being on it but unfortunately we have no pre-Valcyte baseline to go by. If I can't stay on the Valcyte, I will definitely push for Famvir ( at a slightly lower dose than when I first took it before Valcyte (32 pills a day!!). Thanks again for your advice, much appreciated!!!

 

[vamah]

Love hearing about valcye success! Have been on for 8 mos now and feeling discouraged at lack of progress, but will keep trudging on.

Have never clearly understood use of ldn. Can someone give brief explanation of why it is used in combination with antivirals?

 

[OnlyInDreams]

Love hearing about valcye success! Have been on for 8 mos now and feeling discouraged at lack of progress, but will keep trudging on.

Have never clearly understood use of ldn. Can someone give brief explanation of why it is used in combination with antivirals?

Vamah, have you not made any progress at all with Valcyte? Which virus is active for you?

Here are a few snipets from an article on LDN for CFS:

"LDN is a ‘feel-good’ drug and some studies suggest ‘feel-good’ agents such as endorphins are low in pain disorders like fibromygalgia and chronic fatigue syndrome (ME/CFS). By blocking the receptors for endorphins, low doses of naltrexone appears to trick the brain in producing more of them. Given that endorphins are known as ‘natural pain relievers’ more endorphins might be a very good thing for people with these disorders to have. Interestingly, endorphins are produced by the HPA axis which appears to be impaired in both FM and ME/CFS.

Natural Killer Cell Stimulation – LDN enhances the responses of natural killer cells, an area of much interest in ME/CFS.

Microglial cells, in fact, may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection and some researchers believe they could be chronically turned on in ME/CFS and fibromyalgia. LDN’s abiity to block a key receptor (TLR 4) on microglial cells appears to inhibit them from becoming activated."

 

[vamah]

Vamah, have you not made any progress at all with Valcyte? Which virus is active for you?

Here are a few snipets from an article on LDN for CFS:

"LDN is a ‘feel-good’ drug and some studies suggest ‘feel-good’ agents such as endorphins are low in pain disorders like fibromygalgia and chronic fatigue syndrome (ME/CFS). By blocking the receptors for endorphins, low doses of naltrexone appears to trick the brain in producing more of them. Given that endorphins are known as ‘natural pain relievers’ more endorphins might be a very good thing for people with these disorders to have. Interestingly, endorphins are produced by the HPA axis which appears to be impaired in both FM and ME/CFS.

Natural Killer Cell Stimulation – LDN enhances the responses of natural killer cells, an area of much interest in ME/CFS.

Microglial cells, in fact, may be a key component of the ‘sickness response’ that produces fatigue, fluey feelings, pain, etc. when we come down with an infection and some researchers believe they could be chronically turned on in ME/CFS and fibromyalgia. LDN’s abiity to block a key receptor (TLR 4) on microglial cells appears to inhibit them from becoming activated."

I'm not sure about progress. Feel like I keep taking one step forward one step back, so I think those changes may be more likely to be caused by how much sleep I get, weather (when it gets colder I always feel worse), etc. Was feeling a bit better then got a cold which I feel like knocked me back 6 months.

Thanks for info on ldn. I read some other stuff I found online. From what I read, it looks like you have to get it from a compounding pharmacy and I am concerned about that because how do you know if you have found a reliable one?

 

[OnlyInDreams]

I'm not sure about progress. Feel like I keep taking one step forward one step back, so I think those changes may be more likely to be caused by how much sleep I get, weather (when it gets colder I always feel worse), etc. Was feeling a bit better then got a cold which I feel like knocked me back 6 months.

Thanks for info on ldn. I read some other stuff I found online. From what I read, it looks like you have to get it from a compounding pharmacy and I am concerned about that because how do you know if you have found a reliable one?

Get as much sleep as possible every night. Try not to cut corners in regards to sleep if you can avoid it. And dress warmly! Valcyte suppress the immune system. So you have to be especially careful during the cold months of the year.

For LDN, you can just purchase the standard 50mg tablets (of Naltrexone) sold at virtually any pharmacy. Then, you have to dissolve the tablet in 50mL of distilled water and stir until it's completely dissolved. Then, buy a medicine dropper so you can measure between 1 and 5mg of liquid. And just take about 3mg every night before bed. Then, store the LDN in the fridge in some kind of container that you can seal off.

 

[vamah]

Get as much sleep as possible every night. Try not to cut corners in regards to sleep if you can avoid it. And dress warmly! Valcyte suppress the immune system. So you have to be especially careful during the cold months of the year.

For LDN, you can just purchase the standard 50mg tablets (of Naltrexone) sold at virtually any pharmacy. Then, you have to dissolve the tablet in 50mL of distilled water and stir until it's completely dissolved. Then, buy a medicine dropper so you can measure between 1 and 5mg of liquid. And just take about 3mg every night before bed. Then, store the LDN in the fridge in some kind of container that you can seal off.

Thanks. I try to get enough sleep, but imsomnia is a big problem for me. Just when I think I have found combination of sleep meds that works, it stops working. I was doing well with sleep for a couple months and is why I wonder if feeling better had anything to do with valcyte, or was just the result of being better rested.

 

[OnlyInDreams]

Thanks. I try to get enough sleep, but imsomnia is a big problem for me. Just when I think I have found combination of sleep meds that works, it stops working. I was doing well with sleep for a couple months and is why I wonder if feeling better had anything to do with valcyte, or was just the result of being better rested.

What kinds of sleep meds are you taking? Your improved sleep could have been from a combination of the Valcyte and the sleep meds. I take Amitriptyline every night, helps with sleep tremendously. It is also a great anti-anxiety med.