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» LymeNet Flash » Questions and Discussion » Medical Questions » valcyte update

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Author Topic: valcyte update
timaca
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HI all~

I thought it was time to give a brief update on my valcyte journey.

I believe I had (maybe still have)lyme disease.

I took lots of antibiotics and improved but didn't get totally well.

I was diagnosed with chronic viral infections at Stanford Medical Center by an ID doctor there (who is very kind).

I was put on Valcyte to battle the viruses that I had high titres to. He asked that I discontinue the minocycline.

I'm 16 weeks into the valcyte treatment. At week 15 I started to feel MUCH better. I still have all kinds of symptoms (nerve pain, joint pain, muscle pain, head pain, etc). However, I have less brain fog, less fatigue and a MUCH less feeling of sickness inside.

I am encouraged that the valcyte may be working.

For those of you interested in checking out whether or not viruses could be part of your problem please do some reading at www.hhv-6foundation.org. I'm Timaca on that forum too.

Understand that you can't tell by symptoms whether or not you have a viral or bacterial infection going on. These pathogens can cause the exact same symptoms.

I'll report again as time goes on.

Best,
Timaca

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CD57
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Hi Timaca!
Great news, thank you.

Were you treated for co-infections, too, or just Lyme? How long did you treat Lyme?

Best to you!

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lymebytes
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I agree - I had 4 viruses and was put on Valtrex (as Burrascano recommended at last Hope to Heal conf) in one year they were gone. Valcyte is very good no doubt, very expensive though. Acyclovir is almost identical to Valtrex and can work well too.

I too feel better, but the LD symptoms are raging still.

Anyone, especially in severe pain and/or with neuropathy should be tested.

These viruses are dangerous and need to be addressed as they can lead to lymphoma and luekemia to name a couple.

I was invited into Standford studies but too sick to accept - go figure.

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timaca
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CD57~ I was not treated for co-infections. I tried Malarone (empiraclly) but couldn't tolerate it (headaches and abdominal pain).

I was on IV rocephin for 6 1/2 months (along with oral antibiotics during that time). I improved tremendously, but relapsed most of the way when taken off the drug.

I was then on bicillin for over a year, and mino for a few months. Now the valcyte.

Lymbytes: If you were invited to participate in the Stanford study, then you were likely high for HHV-6. Valtrex doesn't kill HHV-6, only Valcyte does. If, indeed, you have high antibody titers to HHV-6, then you may want to go on valcyte.

You can't differentiate by symptoms if your illness is caused by viruses or bacteria. Thus, you really can't say that your LD symptoms are raging. They could be viral symptoms. (Believe me, I've gone over this topic with several well known lyme docs).

What viruses did you test high for? I had high antibody titers to HHV-6, EBV, CMV and VZV (chicken pox/shingles).

Timaca

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Lemon2Lyme
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Timaca,

Good info...thanks.

How is the Valcyte as far as safety and side-effects?

--------------------
"Whatever can go wrong will go wrong."

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timaca
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Lemon2lyme~

I've tolerated the valcyte well. Probably the biggest side effect is the cost! [Eek!] However, my insurance is covering a big chunk of the $2000+ a month cost. For those who really can't afford much, Roche Pharmaceuticals does offer a patient's assistence program.

In some people who take valcyte, it can drop the WBC low. I heard of one person who had to stop taking the drug because of low WBC.

Another person is in the Stanford trial. Her WBC is 2.5 and they haven't pulled her out of the study yet.

Labs must be drawn weekly for the first 3 weeks (CBC). You are on a double dose of the valcyte for the first 3 weeks.

Then you drop to 900 mg valcyte daily for a total of 6 months. Labs are then drawn every other week (CBC), and a monthly complete metabolic panel and urinalysis are done.

Timaca

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typhoon_sheri
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Timaca,
I am happy that you are doing well on the Valcyte.
I was on Valtrex and Valcyte at the same time last year, and was not as lucky as you. I had many side effects, one which was swollen legs.

I took both for 3 months.........

The Doc I went to in MI is BIG into prescribing the Valcyte. Everyone I talked to in the waiting room was on it. He is paid by the Pharm company to do research, and goes to the conferences that Dr. Montoya hosts.

It's just me, but, after 3 months my counts did not come down. It also caused my immune system to be compromised.

I hope it is something that works, I was just scared to continue on it as they don't know the long term effects. Maybe someday I'll get back on the band wagon again !!!!!

I was on another site and (don't remeber which), but was reading that after the treatment the titres go back up. Do you know if that is so?

Again, good luck, always happy to hear something is working !!!!!

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timaca
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typhoon_sheri~

Wow! Valcyte and Valtrex at the same time!! I would think that would be pretty rough on your body!!

Do (or did) you see Dr. L in Michigan? He is into viruses, I know...

3 months really isn't enough time to see if the Valcyte is working. It took 14 1/2 weeks for my friend to see improvements, and 15 weeks for me.

If you still have high viral titres, you might ask your doctor to try putting you on one of the anti-virals at a time, for a longer period of time, to see if you get benefit.

The viral counts likely won't come down after 3 months time.

When the Stanford study gets released, it will give us lots of info on how the drugs effect the viral titers.

I don't know about the titers going back up after treatment. I do know that one friend of mine has been checked regularly for HHV-6 after he was treated and the titers are negative.

Best,
Timaca

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typhoon_sheri
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Timica,
Please keep us informed of your journey !!!!!!
Wishing you the best .............
Sherri
PS yes, it was Dr. L ..............

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CD57
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Timaca-curious: have you met others on this journey who were diagnosed with Lyme, and went on to treat their viruses and got better? It seems this is probably common.
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timaca
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CD57~ I have a friend who was diagnosed with lyme (and Q fever), who improved with antibiotics but did not get well. She is on valcyte and mino, and is improving further.

We both feel that the "sick" feeling is gone, we both have more energy (although not near normal), and we both have less brain fog.

Another friend was diagnosed with lyme (4 of the 5 bands CDC requires for diagnoses on IgG). He did not do lyme treatment, just the valcyte, and he is well.

Timaca

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CD57
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That's great news Timaca! I would be interested to know what these docs who are prescribing the Valcyte have to say about Lyme and co.....can you shed any light on that for us?
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timaca
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Hi CD57~ Let's just say that it is still a work in progress. There are some LLMDs who are quite interested in how my friend and I do on the valcyte.

The friend who took only the valcyte...the doctor at Stanford believed viruses alone were the cause of his issues. Apparently that was the case as he got well. He may have had a small amount of antibiotics prior to the valcyte...I don't remember. If I think of it, I'll ask him.

My friend who is on the mino and valcyte...the doctor thought her high Q fever antibody titers necessitated further antibiotic treatment. Hence mino and valcyte.

For me, the doctor felt that I'd had enough antibiotics for now, and wanted to see if I could get well on valcyte alone. Since I'd had C. diff for 11 months, and my GI tract was marginal at best, I thought it would be a good idea to take a break from the antibiotics as well.

Now what is very interesting, is that in Jan 2007, I had a CDC positive IgM WB from Igenex with lots of lyme specific bands.

2 1/2 months after taking the valcyte, I had repeat WBs done from Igenex (Oct 29th this year)...I only had band 41 on the IgG and band 34 on the IgM (with a 41 IND).

That is the fewest bands ever on a WB!!!

Now, it is noted in the literature that people with certain acute viral (CMV, HHV-1, EBV) can have a false positive IgM WB.

The question that I'm discussing now with other professionals is it is possible to have a chronic viral infection and a false positive WB?

If I get an answer at some point, I'll post back.

Trust me, these discussions are ongoing with certain people!

Timaca

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oxygenbabe
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Timaca, a few questions:

1) Did each treatment give you gains (including IV antibiotics) that you retained or
2) Did certain treatments give you gains that you lost after stopping?
3) Are you better off now than ever before, or is it helping you regain ground you lost

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CD57
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My goodness that is VERY INTERESTING NEWS!!! Definitely let us know what you find out. Had you done any abx treatment in between your Jan and Oct 2007 Western Blots? I'm amazed that so many Lyme positive bands disappeared!!

I will bring this up with my LLMD, who by the way, is affiliated with Igenex. I do recall calling Dr H at Igenex about this when my latest WB showed some verbage about the viruses; he said I definitely had Lyme.

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timaca
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oxygenbabe~
The IV rocephin and oral antibiotics gave me tremendous improvement. I started seeing improvements after 4 1/2 months of IV therapy, and the picc line was pulled at 6 1/2 months due to a fungal infection in the line.

I had increased energy, decreased symptoms and increased brain clarity. Before I couldn't follow conversations, and trying to engage in a conversation was difficult. That improved greatly.

All my symptoms came back and hit me like a freight train 3 weeks after the antibiotics stopped. The only thing that didn't get as bad as before was the brain fog. It worsened, but didn't get as bad as before.

Also, while the fatigue got bad, I didn't have to sit on a stool to make dinner for my family as I had to before. So I maintained a small amount of improvement in fatigue and brain clarity.

The HBOT improved my stamina, and brain fog, but not my symptoms. These were minor improvements....probably not as great as the IV rocephin. But, when you're sick, any improvement is welcomed.

As you have said, one must continue the HBOT at some sort of "maintenance dose" to keep improvements.

I could do that up until I saw the doctor at Stanford, and he did not want me doing HBOT with the valcyte. I think he didn't want to mix treatments. Also, I don't think he was much of a believer in HBOT.

Currently, I am close to where I was when the IV rocephin discontinued. Of course, I'd had more rocephin than I've had valcyte at this point in time.

It is interesting that I had defined, significant herxheimer reactions to the antibiotics I've been on, the HBOT, and to the valcyte.

We'll see if I continue to improve on the valcyte or not.

CD57~ Yes, I was on some bicillin, then minocycline from Jan 2007 until Sept 18th. Then antibiotics were stopped.

Now, I've had about 14 western blots done on me over the years...some at Igenex, some at Stonybrook and some at MDL. I've never had so few bands from Igenex, and I've been on antibiotcs for much of the time that the western blots were done.

Keep us posted what your LLMD says!
Timaca

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CD57
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Timaca--what's new with you and your journey?

I see LLMD tomorrow and will ask about Igenex's WB.

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timaca
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HI CD57~ I am 18 1/2 weeks into valcyte treatment. I continue to feel "unsick" for which I am very grateful. My brainfog is also less and my energy level has improved (I've done lots of Christmas preparations! [Smile] )

Prior to feeling better at the 15 week mark of valcyte treatment, my body could go no faster than 2.5 mph on the treadmill. That was on a good day. Now I start at 2.6 mph and work my way up to 3.0 mph.

I can run many errands in a day.

I still have lots of symptoms, but it is remarkable to not feel sick and to have more energy and less brainfog.

A friend of mine saw Dr. M last week at Stanford. He was excited about her improvement (which is similar to mine). He feels she will get well. He said to expect to take 1 year for the symptoms to go away. He would like her to stay on the valcyte for 3 more months (total of 9 months).

Keep us posted on what your LLMD says!

I am grateful for the improvements that I've had and hope that they continue.

Best,
Timaca

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Doomer
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Timaca,

Hi, I'm glad that you are doing better and not feeling the sickness anymore.

If you were doing it over again would you have done the valcyte much sooner and when? Would you have done it with IV Rocephin or and with babesia treatment? Or would this have been too much to handle?

Just wondering if the lyme activates the viruses to go wild and out of control and one has to get the lyme undercontrol before treating virus.

Glad to know that it is possible to us to get well again.

Doom

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lymebytes
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Valtrex 500mg 3x's per day for one year pushed dormant, HHV6, CMV and EBV for me.

Valtrex and Valcyte are both outrageousy expensive and Dr.S (San fran) says acyclovir (generic) works well when Valcyte and Valtrex fail.

Also Famvir just became available in generic version and works well too.

--------------------
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trails
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[hi]
I am so glad to see this good news!
[woohoo]
I know you have a long road ahead, but I also know you have a strong will and a loving family and a great buddy who shares a funny steroid story with you. [Big Grin]

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timaca
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Doomer~ If I had it to do over again, I would have gotten tested for viruses right along with the lyme testing!! We don't know when the viruses became active...right at the start or later on in the game. Since the symptoms are the same for viral infection and lyme infection, one can't tell by symptoms what is what.

I would have started on valcyte the minute I knew my viral titers were high (including HHV-6..since that is what the valcyte is targeting.)

I think lyme can activate the viruses, but of course, this is a theory. One can treat both lyme and viruses, as I have a friend who is on both minocycline and valcyte. She is improving too (up to 3.8 mph on the treadmill! [Smile] )

Lymebytes~ Valtrex doesn't treat HHV-6, only valcyte does. I am not familiar with the other antivirals...although it is likely that I will be on valtrex after the valcyte....as that seems to be the course that my treating doctor is taking with other patients.

Fin24~ Do lots of reading at www.hhv-6foundation.org. Especially the link about testing. That will answer many of your questions. Post back after you read there.

You can also read the patients link. I'm Timaca there too, and my story and all my viral titers are posted.

Yes, high antibody titers may just mean a robust immune system, but in someone who is ill, and has high titers, the theory is that they are ill from the viruses.

Dr. Montoya has done one open label study where people with high antibody titers to EBV and HHV-6 got well using Valcyte. He is currently doing a double blind placebo controlled study.

You mentioned VZV...my IgG titer was as high as the lab measured greater than or equal to 1:256. Next draw (after being on valcyte) it was 1:16. I plan on asking the treating doctor about that virus, along with the others that I've tested high for.

My EBV was 1:320....next draw was 1:5120. [Eek!] Something is definitely brewing there! (These draws were before treatment).

Valcyte is used because it can kill HHV-6. Valtrex doesn't do that.

The doctor treating me feels that cancer and other problems (like MS) from the viruses is a higher risk than cancer from valcyte. I was feeling horrible, and didn't want to feel like that the rest of my life, so the risk of cancer from the drug was a risk I was willing to take.

As far as other risks from the drug, I was monitored (lab wise) once a week for the first 3 weeks, and now every other week for as long as I'm on the drug (blood, urine).

Dr. Montoya did not have to discontinue the drug for anyone in his first study for any reason. I don't know about his current study.

Trails~ Your post made me laugh...yes, we do share a VERY FUNNY steroid story [Big Grin] !! Your Christmas card and photo should be mailed this week (with any luck). You're a gem!

Best,
Timaca

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amk33
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Timaca,
Do you know if Valcyte works for Parvovirus, too? My values are high, as well as for EBV. My doctor put me on Valcyte (along w/minocycline)

for a trial period. But I am reading that it targets CMV, and now in your post, HHV-6. She

is not giving me weekly blood tests while taking it (only monthly).

Did you have an exacerbation of your symptoms when you first started taking it? I've been on it for 2 days, and I have increased muscle/nerve

issues for a few hours after each dose. Probably too soon for a die-off?
Thanks.

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timaca
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amk33~

I don't believe valcyte is helpful against Parvo virus. I think IVIG is used (at least that is what one poster on the HHV-6 website said Dr. M. would use on her).

The weekly blood tests in the beginning were because Dr. M uses a double dose of the drug (900 mg twice a day) for the first 3 weeks, then drops it to 900 mg daily after that.

For the first 3 weeks, he does CBCs weekly. After that a CBC draw once a month, with a CMP (complete metabolic panel which includes a CBC and liver function tests) and a Urine Analysis once a month....which amounts to trips to the labs every two weeks.

http://clinicaltrials-nccs.nlm.nih.gov/ct/show/NCT00478465?order=1

The above link is to his current clinical trial, which may give his protocol for the drug and lab testing. Your doctor may be interested in this info, along with the hhv-6 website
www.hhv-6foundation.org

Have you been tested for HHV-6?

I didn't have an increase in symptoms as you have described...although I think I've read where others have. Dr. M describes a "herx like reaction" which takes place between week 2 and 4 after starting the valcyte.

Exactly at week 2, I got a severe headache that lasted for a night and a day. Then at 4 1/2 weeks I had a day where I could not be vertical. I believe those to be my herx like reactions.

Best,
Timaca

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oxygenbabe
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I'm glad you're feeling better.
I don't know what to make of it all and will follow your reports with curiosity--a year on valcyte, see how you are, and how you feel when you finally go off.
It is strange to me that you did so well on rocephin and then totally relapsed.
I understand the theory that lyme suppresses immunity and then, viruses reactivate.
I tend however to believe there are probably viruses in the ticks as well.
Maybe the theory that the bugs were bioengineered in such a way that they contain viral fragments as well, and/or they release and/or stimulate growth of viruses when killed...something is strange.
I just wonder if you had lyme and relapsed from rocephin, how antiviral treatment will be the key.
Perhaps just getting some of the infections, whatever their nature, into check, the immune system can do the rest.
It presents a confusing picture to me I must admit.

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roro
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i have lyme, co-infections, HepC, other viruses and lord knows what else. see my post "toxic soup of infections

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=061379

The problem is knowing wht order to treat things in. I know my viral infections have a big role in me not getting better.

I really think people like us need a new name for our disease. Its NOT JUST lyme disease. I call it "toxic soup of infections"

I think once you get infected with something like lyme or hepC (I have both) it leaves you wide open to other things that other people can fight off.

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timaca
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oxygenbabe~

I don't think I'll be on valcyte for a year. My guess is 9 months, if the doctor prescribes for me what he prescribed for my friend. (Currently I have a 6 month prescription for the drug)

It is all a very confusing picture, I agree. I have a list of questions that will be getting reviewed by various doctors and researchers concerning all this. If any answers become evident I will post them.

I was speaking today with a gentleman regarding some of this (he is well after being treated with valcyte). He also had a lyme diagnosis, which he feels was in error...that it was viruses all along. He contends it is viruses alone in me that is making me ill, not lyme. I'm not sure anyone can say for sure, but it will be interesting to get input from these various doctors and researchers.

What is for sure is that I have a viral load that needs to be addressed, hence the valcyte.

roro~ The gentleman that I saw today would say to you "treat the viruses first." Whether or not that is accurate, I can't say. And he is not a doctor, but he has experienced first hand what it feels like to be very ill...and what got him better.

CD57~ What did you hear from your LLMD?

Timaca

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CD57
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My LLMD said yesterday that about 40% of his patients have viral issues as well. He didn't have much else to say about them other than a lot of folks do antivirals as well.

I find these posts very interesting, esp. the microbiologist's report that high titers (IGG probably?) are indicative of a normal immune system, considering the viruses can never be completely killed from our bodies, just suppressed by our immune systems. That's how these anti-virals work -- they stop the viruses from being able to replicate, and then allow the immune system to kick in to suppress them back to their normal states of dormancy.

Timaca, does Dr M have anything to say about this? I guess they recognize that, but with some folks who are ill, the viruses are active again, whether the titers are IGM or IGG. I see him in March, will be interested to hear what he has to say.

One thing I find interesting about your treatment is that you weren't treated for co-infections, just Lyme. And you relapsed when the Rosephin was discontinued. Could it be possible that you have co-infections that have not been treated which are part of the picture?

Sigh....so many questions.

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timaca
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CD 57~ Regarding the high IgG antibody titers to viruses....the following comes from the hhv-6 website, the testing link. Go there to read more: http://www.hhv-6foundation.org/testing.html#elevate

"Elevated IgG antibody levels.
Elevated IgG antibody levels can suggest, but not prove active, chronic infection. In a 1996 study of HHV-6 in CFS patients, 89% of the patients with IgG titers of 1:320 and above were found to have active infections by culture. (Wagner, Journal of Chronic Fatigue Syndrome)Stanford infectious disease specialist Jose Montoya believes that the best evidence of smoldering central nervous system (CNS) infection is the IgG antibody to the virus, and not the virus itself. In a pilot study, he found that when patients with high titers of HHV-6 IgG (1:320, 1:640 or higher) and EBV are treated with a potent antiviral; their titers fall substantially along with a significant improvement in symptoms.5 Elevated IgG Antibodies to HHV-6 cannot tell you for certain that the infection is active, but high titers support a clinical diagnosis. Similarly, elevated EBV VCA (late antibody) titers cannot indicate with certainly that an infection is active. However, EBV Early Antigen (EA) antibodies disappear rapidly after an infection is over, so elevated EBV EA antibodies do predict active infection.

Individuals vary in the way they respond to virus: some may not be able to generate antibodies due to a weak immune response. Others may generate large numbers of antibodies to many pathogens, and some healthy individuals have high titers of HHV-6 IgG antibodies. So looking at elevated antibodies to determine active infection is far from a perfect measure. Montoya is currently conducting a placebo controlled trial of Valcyte in symptomatic patients with elevated antibodies to HHV-6 & EBV. If these patients show a dramatic drop in antibody titers and an improvement in symptoms in response to Valcyte treatment, he will demonstrate conclusively that elevated IgG titers can be a sign of active infection and could be a good biomarker in monitoring patients.

At Stanford, Montoya uses antibody tests done by immunofluorescence or IFA to determine if a patient might qualify for antiviral treatment. He uses the IFA test at Focus Diagnostics Laboratory and has established a minimum threshold for treatment. He does not use ELISA tests that are offered at many labs (which report a number such as 0-20) because they are difficult to compare to the IFA values established in the literature, and because these assays cannot be used to monitor values over time. Many hospitals use the IFA test. Other laboratories that use the IFA test include: Focus Diagnostics Laboratory, Specialty Laboratories and Medical Diagnostics Laboratory."

That's great that you will see Dr. M in March! If possible, have your LLMD order the viral tests (EBV and HHV-6) from Focus lab about a month before your appt....The tests are posted on the HHV-6 website (I have a post there in the patient's forum under testing at Focus labs) That way, Dr. M can have up to date viral labs on you before you see him!

Regarding co-infections. I never tested positive for any. I was tried on Malarone, but didn't tolerate it for various reasons. I don't think co-infections are an issue for me since I am getting better on the valcyte.

Now, if I don't get well, then of course co-infections, viruses, lyme, etc all needs to be readdressed again.

Timaca

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roro
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My IGG and IGM were both high (300's 400's) in the ELISA. Does that test just lyme antibodies or total antibodies to everything? anyone know?
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ctlyme
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I just got my MDL chronic fatigue panel back.
This was a serum test i think.

Positive for
herpes 1 igG 3.72(pos is over 1.09)
herpes 6 igG 10.18(pos. is over .99)!!!!!!
ebv both the igG and igM are pos.

Not sure how to read this but the hhv-6 is a 10.18 !!!

My lyme titers are always very high - both igG and igm.

Doc gave me 14 days on valtrex . Although i think he overlookd the hhv-6 results b/c he only mentioned the ebv results.

Can anybody give me some ideas what i am up against .

thanks

Tim

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timaca
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Tim~ Do lots of reading at www.hhv-6foundation.org. Read all the links they have there.

Try to get tested at Focus Diagnostics so you can compare your results to what Dr. Montoya considers high and worthy of treatment.

Indeed, your hhv-6 looks very high. Valtrex is not effective against hhv-6, only valcyte is.

Best,
Timaca

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timaca
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roro~ I'm sorry, I don't know the answer to your question.

Perhaps the following link will help: http://labtestsonline.org/understanding/analytes/antibody_tests/glance.html

Best, Timaca

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ctlyme
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Thanks Timaca,

I will look thru it more carefully. i appreciate the update you have provided. i probable would have missed the possible connection to my being ill.

My next appointment is w/ an I.D. dr so i will explore options with her also.

Thanks

Tim

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timaca
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Tim~ It would be wise to print out as much info as possible from the HHV-6 website for your appt with the ID doctor.

Unless they know what is happening at Stanford, they won't know about treating chronic viruses...and they won't be able to help you.

If they aren't aware of the situation at Stanford, you can go in well informed and share with them.

And trust me, you might very well have to do that.

Timaca

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amk33
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Thanks Timaca. I looked at my blood results again, and I also had high CMV. I guess this is why my doc thinks that the Valcyte is worth a try.
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