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Valcyte (plus) Update

Timaca

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I had a Cpn infection. My IgA was as high as the lab measures (>=1:256). My IgG was also as high as the lab measured. I was put on 300 mg rifampin twice a day and 100 mg doxy twice a day. After 10 months my IgA went to as low as the lab measures (<1:16). I'm off antibiotics now and will hope the Cpn stays latent!!

You can follow my story more completely here if interested (I'm Timaca): http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200&page=10

Glad to hear your daughter is doing so well!!

Best, Timaca
 

SOC

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I had a Cpn infection. My IgA was as high as the lab measures (>=1:256). My IgG was also as high as the lab measured. I was put on 300 mg rifampin twice a day and 100 mg doxy twice a day. After 10 months my IgA went to as low as the lab measures (<1:16). I'm off antibiotics now and will hope the Cpn stays latent!!

You can follow my story more completely here if interested (I'm Timaca): http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=display&thread=200&page=10

Glad to hear your daughter is doing so well!!

Best, Timaca
That's good news, Timaca! Not sure why I'm getting clarithromycin since rifampin and doxy seem to be more common treatments. I hope I can clear (or put into latency) my cpn infection as quickly (relatively speaking) as you did.
 

CBS

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I have some sinus issues that have gotten progressively worse over the past 6 months, so neutropenia could be the explanation. Valcyte can cause severe neutropenia, so I get tested every 6 weeks. My WBC has been in normal, if low normal, range all along. Now I'm curious to see if it's been slowly dropping. I'll have to dig out my old lab results.

I've been on a fairly high dose of Valcyte for 25 months so far.
Interesting comments about sinus infections and Valcyte. I've been on Valcyte for just under a year. No issues with neutropenia (my neutrophils actually rose a bit above the normal range this last month). However, I have had sinus issues for the last three months that have I have not had before (I do have long standing issues with nasal polyps). I recently seem some success with nasal irrigation but I'm very wary of potential immune issues. I sterilize the pot every time and I always use distilled water (brain eating amoeba are not my idea of a good time). I typically irrigate two-three times per week.
 

vli

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blame brain fog, but: just want to make sure, SOC you stopped val eventually because of neutropenia right?
 

undcvr

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My neutrophil lvls actually rose a bit too at the beginning. I was on Valctye for a total of 2 and a half years in the end I decided to stop it becos it wasn't going anywhere and my blood count lvls dropped a little bit. My doctor said it was fine but I decided to stop it anyway as I cud not see myself being on it for longer than I was already on.
 

Charles555nc

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Im struggling with Valcyte now...I basically do 5 days on and 2 days off...Im pretty sure it fights the virus but also kind of supresses the immune system at the same time. People who take it for years without breaks might being reaching a plateau because of that. I make sure I take selenium and lysine to fight the viruses as well.

Im also doing LDN which boosts your immune system, but I had to start at the minimum dose .5mg every other day. As i go up to 1mg every other day, I find I can also tolerate Valcyte better. Valcyte lowers your nk cells and LDN boosts them supposedly...works for me.

Concurrently doing DHEA, methylation, vitamin c, beta carotene, lithium orotate, NAC, and others...
 

undcvr

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it actually didn't lower mine at all the 2 years i was on it. Mine were already pretty low to start with
 

SOC

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Here we are, more than 3 years since I started this thread (wow) so I thought I'd update again.

I've been off Valcyte for about a year and half. I continue to improve with additional treatments. There's been no apparent return of HHV-6 or related symptoms. Daughter has been off Valcyte for more than 2 years and also has had no return of HHV-6 or related symptoms.

Since I stopped Valcyte, I took Equilibrant for a while to deal with Parvo B-19 and Coxsackie. Both resolved in several months. I felt better after that. It wasn't huge, but noticeable and definitely worth doing.

Discovering and treating OI has improved my functionality and cognition. It wasn't as big an improvement in my condition as I got with Valcyte, but significant nonetheless.

These days I tutor 20 hours a week, 15 of them away from home. I drive, and I walk into small stores like pharmacies or convenience stores on my own. For longer distances I still need to wheelchair to avoid PEM. I no longer need to nap during the day and am not abnormally tired by the end of the day. I can do normal housework if I pace it carefully. My biggest problem now is limited energy/PEM. I've increased what I can do a lot, but I'm still significantly impaired. I wouldn't call myself fully housebound at this point, but I really can't get out and about much by myself because I can't walk very far without causing PEM.

When I think back to the time when we'd just started Valcyte (3 and a half years ago), I'm impressed with my daughter's improvement, and mine also, although I have a long way to go still. Back then I was bedbound, felt crappy all the time, and had major cognitive impairment. Daughter and I had to take turns lying down in the back of the van when my husband drove us to see Dr Lerner because neither of us could sit upright or stay awake for the 6 hour trip. We spent our hotel time in bed and still had minor relapses from the trip. By the end of our Valcyte treatment, we were both up and perky (!!) the whole trip. Last year daughter drove herself for the same 6 hour trip to see her boyfriend about once a month. She graduated from college and is now in graduate school. She's done several day hiking trips in the mountains. What a difference!

I know that a healthy person would feel extremely unhappy to be limited in the way I am now, but for me it's such a big improvement over where I was 3.5 years ago that I'm quite happy to be where I am now. That isn't to say that I don't want to be better or that I'm not continuing to look for ways to improve.
 

SOC

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I forgot to mention that I'm now off Cymbalta, which I'd been on for maybe 8 years for ME/CFS joint and muscle aches. I also don't take sleep meds anymore to help me fall asleep (after about 6 years on them). I still take trazodone to maintain sleep. I'm not eager to try going off that because I'm really enjoying sleeping 8 or more hours straight. Waking up every couple of hours all night, every night was a misery I don't want to live through again.

While I'm liking not needing some of the meds I used to take for really problematic symptoms, I still take quite a few meds to deal with other symptoms. At present those include Valtrex to keep herpesviruses suppressed, trazodone to maintain sleep, Florinef to increase blood volume, Armour thyroid (thinking of changing to synthroid), and verapamil for tachycardia. Not too bad, really.
 

vli

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My biggest problem now is limited energy/PEM. I've increased what I can do a lot, but I'm still significantly impaired. I wouldn't call myself fully housebound at this point, but I really can't get out and about much by myself because I can't walk very far without causing PEM.
I think Tristen said his doc also said this was in his clinical experience the last thing to go.
I wonder why that is.
 

SOC

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I think Tristen said his doc also said this was in his clinical experience the last thing to go.
I wonder why that is.
I'm thinking that the root problem is directly connected to the PEM and we haven't addressed it yet. Infections that are currently being treated in ME/CFS patients are probably secondary. We feel a lot better if the infections are treated, but we haven't treated the root cause.

My immune test results suggest I'm still fighting an infection, but we've treated everything we can find. Maybe for me, at least, there's an as-yet-unidentified infection still ongoing.
 
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I'm thinking that the root problem is directly connected to the PEM and we haven't addressed it yet. Infections that are currently being treated in ME/CFS patients are probably secondary. We feel a lot better if the infections are treated, but we haven't treated the root cause.

My immune test results suggest I'm still fighting an infection, but we've treated everything we can find. Maybe for me, at least, there's an as-yet-unidentified infection still ongoing.

Keep us updated I'm curious thanks.
 

SOC

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Keep us updated I'm curious thanks.
The report from my immunologist this week is that my immune system is definitely trying to fight an infection. The indicators of that have been going on for as long as we've been doing immune testing (more than a year) and are getting worse, not better. :(

Since we've tested and treated the major players in the ME/CFS infection world, my immunologist thinks it is indeed an as-yet-unidentified (by the medical world) infection. Maybe a gut infection per KDM and/or Chia. I'll be going back on Equilibrant for a while to see if it makes any noticeable changes to my immune system that suggest we're making headway against something.

I've got a BIG pile of scripts for more testing and referrals to specialists, so there will be more information over the next couple of months, but I'm not getting the feeling any of it is going to be good news. Maybe that's just because I'm worn out from a difficult trip and overwhelmed with processing the information I got. :)

When I've had a few days to rest and process, I'll try to update further.
 

SOC

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SOC - sorry to hear you're going through all that. :hug:
Thanks, Sasha! :hug: The travel this time was particularly rough, which is probably affecting my mood somewhat. Then hubby and I watched the idiot Tea Party faction shut down the government. Like it wasn't bad enough my husband lost 25% of his pay over the summer by being furloughed... now government employees are again suddenly without income. How do they expect people to function like this? Oh yeah, Congress still gets paid. :rolleyes: Do ya think some of their excessive income will "trickle down" to measly little engineers like us? Oops, no, we actually have to have work in order for that whole trickle myth...er.. theory to work.

Then I came out of my couple of hours at Dr Rey's office feeling stunned. I think my brain just gave up trying to process it all. :)

Oh, and by the way. I HATE the Miami Airport! :mad: ;)
 

Ema

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SOC, When did you switch doctors? Was it for the obvious reasons (if you don't mind saying)?

Just curious because I'm finding myself at a crossroads soon with cidofovir and wondering if that is also the end of the road with L.

Ema
 

SOC

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SOC, When did you switch doctors? Was it for the obvious reasons (if you don't mind saying)?

Just curious because I'm finding myself at a crossroads soon with cidofovir and wondering if that is also the end of the road with L.

Ema
We switched about 18 months ago. We did it for two reasons, primarily. First, my daughter became fully functional (with meds), so I wanted her with doctors experienced with long-term health maintenance rather than acute phase illness. Dr Klimas and her colleagues have experience with maintaining functionality in both ME/CFS and HIV patients thoughout life changes. At 21 yo, I'm expecting my daughter to have a lot of life changes over the next 10 years. :)

Also, we felt that we had gotten all we were going to get out of Valcyte -- and it was a lot. We wanted to have a doc who would look at additional parts of the picture -- immune issues in particular.

We were very happy with what our previous specialist did for us. We just reached a point where we needed a doc with a bigger picture.