My Valcyte pilgrimage

Starting a new thread today. Figured now would be a good time. I am ecstatic to report that I am half way to the finish line! It has been 3 months since I began my Valcyte treatment (Started on May 3). I've noticed quite a few differences since then.

I can actually function on 6 hours of sleep! Before treatment, It was a battle to simply stay awake. And an even more difficult battle to process information. I got 5 and 1/2 hours of sleep last night and yet even as I write this post I can think clearly and methodically, almost completely free of the overwhelming brain fog of the past 1 and 1/2 years! I am NOT struggling to stay awake. This is a gift from god, nothing short of it!

I still struggle with other symptoms however. I'm still dealing with tachycardia. But my doc put me on propranolol which is working wonders! It really does help to slow my heart rate down. I now can tolerate exercising. I am able to run a mild-paced mile on a treadmill without having the feeling that I can't breathe afterwards. Remarkable!

I still have more progress to make. But make no mistake, I am ABSOLUTELY noticing a difference! One key ingredient in my treatment is a high dose of milk thistle. It is critical that the liver functions extremely well during Valcyte treatment. My Liver enzymes have dropped dramatically since increasing my dose of MT to about 1500mg daily (give or take). I take it in both liquid and capsule form. At last check, my ALT was 28 and AST was 22 which is extremely good. I got into trouble last year prior to supplementing with MT. I was taking Valcyte and My ALT increased to 114 at one point!

Another med that helps me is Nortriptyline. I take about 50mg at night before bed. Helps tremendously with sleep. I am able to achieve a deep REM sleep which I think is a benefit to your immune system. Your immune system is more productive when you sleep deeply.

Also, I plan on getting my quantitative IgG titers checked for CMV to see if they've come down at all. Hopefully they have.

That's pretty much it! I will continue taking 1350mg Valcyte (2 in morning 1 at night) until further notice. If you have any questions please ask me! 3 months down, 3 more months to go. It's all downhill from here!!!

good to hear things are going well with valcyte.
Any plans on what to do after you finish valcyte eg stay on another antiviral like famvir/valtrex for awhile afterwards etc?

Well, I would like to switch over to Valtrex after 1 year of Valcyte. But my doc says he's hesistant to prescribe the proper dose, which is 4000 mg daily. So I will have to convince him somehow. We'll cross that bridge when I get there I suppose.

Many use alot lower doses then 4000mg, so there are other options??
I have made good improvement like yourself, my concern is when i finish the valcyte i hope i can maintain the improvement but i will stay on a low dose of famvir for awhile when i finish 10 months worth of valcyte.
Itall shows that viruses play a big part in cfs/me when people improve on valcyte or other antivirals.

good luck,
cheers!!!

Dr. Lerner said that in order for Valtrex to be effective, you have to take 1000mg every 6 hours. So if/when I do switch, I would be seeking that dosage. I'm not sure what other options are out there, but I'm going with Lerner's recommendation.

Im just refering to other people being helped with doses like 500mg twice a day etc. myself famvir 250mg twice a day helped which is much lower dose then dr lerner recommends. I know famvir has a intracellular half life of 18hrs, so possibly dosing twice a day could be effective. Many people use these doses as higher doses are just too expensive and out of reach, also different health systems around the world play apart in affording these medicines.

Well I guess if a lower dose has helped you, then you are living proof that lower doses can be effective! Maybe the difference is that it will take you longer to fully recover compared to someone taking the recommended dose. Anything is possible I suppose.

Where is your first thread? I missed it and would like to read about the first half of your journey.

Wonderful news! I second Bluesstem-- What is your background? (e.g.how long ill, what are all the virses contending with, etc?) We want to know if we are simliar subset to see if your treatment may help us! (or, i should speak for myself )
Hope the improvement continues--
be well,
Htree

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!

Hi Onlyindreams,

Still improving on valcyte? Good to hear an update.

cheers!!

Hey heaps, yeah I guess I am due for an update. And yes, definitely still improving on Valcyte!

Well it has been 5 months and 1 week since I began my pilgrimage. My last update was at the 3 month mark. And in that time, I've noticed several changes and weird feelings/sensations.

The brain sizzle sensation has stopped. Instead, I feel...this is difficult to describe. I just feel this very even and consistent cooling sensation all over my brain. It is a great feeling. Unlike the sizzling sensation, which felt horrible. I've noticed than whenever that cooling sensation is the most apparent, my focus and clarity peaks. As if the fog really is being lifted! It's certainly not as dense as it once was.

I don't really require mid-day naps anymore. My stamina has improved. I can run on a treadmill and feel fantastic afterwards. I am sharper and my memory has improved too. I can follow conversations and process words and information much faster! I don't have to ask people to repeat themselves anymore!!!

Still dealing with tachycardia, although that has improved some since my last update. I'm using Propropanol at my primary care doctor's recommendation. I bought a heart rate monitor that I use twice a day. My resting heart rate varies. I've seen it reach as high as 119bpm (it doesn't get quite that high anymore fortunately) and, after a few propropanols it'll drop to the low 80s high 70s on a good day. I'm also still dealing with body aches and ear aches. But I'm thinking those are side effects of the Valcyte itself, not cfs. Also, at night while I'm sleeping I can sense that my immune system is quite active because I feel the chilly tingly feeling on my back almost every night now.

Now that the weather is changing and the flu season is here (and by the way, i'm not getting a flu shot b/c it could interfere with the valcyte treatment), I have increased my immune system supplements. Although, in hindsight I probably should have increased them from the start. I got sick a few weeks ago. I was a complete mess. Slept for 14 hours straight, still felt miserable. Had to miss a day of work. I was considering stopping the valcyte temporarily but I decided against it. I didn't want to miss any doses, not when I've gotten this far! Fortunately, the illness subsided after LOTS of sleep, water, and meds.

I guess to sum things up, I would say simply that the brain fog is no longer dense. Rather, it is sparse! Albeit, at varying degrees of sparseness (it fluctuates). I yearn for the pre-cfs days. The bright, sharp, and clear clarity that I took for granted all those years. But boy am I hopeful! Gradual progress and patience is the name of the game. Every morning I wake up and I remind myself that I am one day closer to those pre-cfs days. That thought alone fills me up with hope and confidence. I am so grateful for folks like Dr. Lerner and Montoya. Can't thank them enough for the work they've done. Their work is literally saving my life...well, at least the quality of my life.

Taking it one day at a time.

Cheers

Im about at the same stage of valcyte as you, good to see things improving, u going to continue abit longer on valcyte?
Im looking at 10months on valcyte as thats how long my supply will last.
thanks for update,
cheers!!!

Yes I will be on Valcyte for however long it takes to get back to or damn near 100%. I'm targeting 1 year or less. We shall see.

OID

Hello everyone,

Just a quick update tonight.

So it has been a few days short of 7 months since I started my Valcyte regimen. The brain fog is completely gone! Not even a hint of it left. Things are getting brighter everyday literally and figuratively!!

Also, I got my lab results yesterday for CMV igG and the titer level dropped from a 10.9 to a 9.7! I've been lab tested for this titer countless times and this is the first time ever that my cmv titer levels have decreased! Coincidence? Not a chance in hell I say. Based on the Lab report, 0.0 - 0.8 is Negative, 0.9 - 1.0 is equivocal, and >1.0 is positive. My goal (and hope) is to get the titers into the negative range. My understanding is that this is totally possible, just have to remain on Valcyte until it does happen. I believe that if and when my titers become negative, I will be able to say that I'm completely cured. I may have to stay on Valcyte for more than a year, which I am prepared to do. And I may need to stay on Valtrex for a while longer too, which I am also prepared to do. All of my other Labs are OK including the liver panel test.

By the way, for all of the skeptics out there (this includes you MishMash) I would say this: I am living proof that this stuff works. This is not a fluke. This is very real. The amount of suffering I experienced prior to Valcyte is too painful to even think about. The plethora of symptoms, the mental and physical restrictions placed on my mind and body were unbearable. I literally felt like I was dying. There were times when I had trouble breathing. It was quite scary.

Valcyte works. It's working for me. And I have hard evidence to prove it.

Special thanks goes to uncdvr, SOC, and heapsreal for supporting and helping me throughout this process!!! I love you guys!!

OID

That's wonderful!!! So happy for you! I start Valcyte after Christmas and I can't wait!! I have reactivated HHV6 and EBV and all the same numbers used in Dr. Montoya's Valcyte study and I am confident that I will get my life back with this treatment.

Your accounts cant be taken seriously or your lab results because it hasnt been reported in the NY times to be effective???

Good on u onlyindreams, im glad for feeling alot better, thats great. I think we are at about the same time frame on valcyte. I think the first few months it is hard to notice the improvement outside of the normal ups and downs of cfs/me, plus the die off etc making one feel bad initially too. But after the 6 month mark one can tell if its doing the trick or not as there is a definate improvement.

Im glad i have done it and i think it might not be for everyone but i think they need to push for proper viral testing and antiviral treatments to work out who is in this sub group that will benefit and the antivirals need to be able to accessed by us cfs/me patients that need it. It seems that in the USA that if u have the right doc and insurance then its possible, in australia i think only a small handful of docs would prescribe this antiviral but valcyte isnt covered by the health system for cfs/me only very specific indications but can be prescribed off label if one can afford to pay full price or has other means, also the testing in australia that dr lerner, peterson etc just isnt available in australia but other tests can help. As for the UK, poor buggers got nothin, only rigorus exercise???? There the 3 dominant countries posting on here, i take it that other countries very between these 3 somewhere.

Im sure there are other sub groups that need exploring but i think with this subgroup being well known that it should be common medical practice to treat this way.

cheers!!

The NY Times? Does the buck stop there? I agree, titer levels cannot be used as a standard benchmark for progress in everyone. But I believe it can be for some people. Who knows why though. I know that SOC reported that her HHV6 titers went from high pre-valcyte to negative post-valcyte.

The trouble with this condition is the scope of it. There are SO MANY bugs, bacteria, viruses that can cause general/chronic malaise and fatigue. The critical part is diagnosing and identifying the exact bug (or bugs) that triggered a patient's condition. Yes, I am fortunate enough to have health insurance that covers the cost of my valcyte and also a local doctor that's willing to prescribe the valcyte. I realize that I am EXTREMELY fortunate to have those two things. And will never take that for granted. Ever.

Nothing on this planet is more important than your health. Nothing. I wanna make sure that everyone hears my story. I want everyone to know that it is possible to crush this debilitating disease. I want to give everyone reading my story hope. I just hope that more doctors will begin to follow Montoya & Lerner's lead. I think we're way beyond the experimental stage here.

Hi OID,

I just wanted to say that I'm quite pleased to read about your progress of Valcyte.

I've been sick since 1994. Over the last 18 months I have seen my own dramatic improvement on Valcyte. I'm definitely still sick but the overall improvement has been surprising while the cognitive improvement has been stunning (from bed bound with sporadic daily self care and unable to carry on a 5 minute conversation to frequent 30-45 minute walk with the dog and hours of cognitive activity on many days - no running on treadmills quite yet but huge improvements in chest pain and shortness of breath). While Valcyte might not work for everyone, for those it does help, the improvement can be life altering to say the least. I've also seem massive relief from what were severe and nearly constant daily headaches. Fifteen hours a day of headaches on a 7-8/10 scale every single day has been reduced to 2-3 hours on a 2/10 level once or twice a week.

As for those claiming that anyone foolish enough to try Valcyte will only be left with broken dreams and financial devastation, I'm out a $30 co-pay every month and the gas (plus the hour) that it takes to drive to the clinic for monthly blood tests. Yes, I'm lucky to have good insurance but two years ago I wasn't even capable of regularly or safely making that 20 minute drive! Hopefully the improvement seen by those of is responding to Valcyte will translate into a much better understanding of who responds and why. If that happens, the best outcome would be much wider coverage of Valcyte by insurance policies for those patients likely to respond.

Lastly, I agree that a key component of any treatment is to support the rest of the bodies functions as fully as you possibly can. Whether that is milk thistle, sleep aids, GI treatments, etc. I was doing many things prior to Valcyte and I feel that they put me in a position to use Valcyte with a minimum amount of Valcyte (or I was just lucky but I doubt that given how sick I was prior to Valcyte).

Best of luck to you!

Shane

PS - I'll be looking for your story in the NYT's (and I'll PM you if my story makes it there first). Let's just hope that Heaps doesn't get there before either of us, we'd never hear the end of it!

CBS - Thanks for sharing your story. Your symptoms and experiences were very similar to mine.

So it has been 10 months now since I began my Valcyte treatment. I am still gradually improving! I've noticed that towards the end of the day I occasionally become drowsy and understandably I blame CFS. So my solution to that is a high energy, high protein meal with plenty of natural Vitamin B. That seems to jolt my system effectively. I also take Vitamin B supplements. I've also added LDN back to my regimen. I've lowered the dose dramatically (from 4.5mL in PM to 0.75mL in the AM) due to awful side effects. I take it in the morning so as to avoid the nightmares that were caused by taking it at night. I also take Vitamin C supp. and airborne for an immune boost daily. I've noticed that I'm catching colds more frequently than I used to and I believe that the Valcyte itself is to blame because it does tend to weaken the immune system. This regimen seems to be working really, really well for me. My doctor went ahead and approved an extension of my Valcyte treatment (from 12 months to 18 months). It took some convincing, but I got it done! So now my target treatment completion date is November 3, 2013. My CMV titer is around the same as it was 3 months ago when I took the test last. Hopefully it will decrease next time.

OID