Interesting visit with Dr Montoya

[SOC]

@Grigor,
My daughter went from about 5/10 and about to drop out of college to about 9.5/10 with 2 years of Valcyte. She also needs Florinef for OI and Valtrex to keep EBV under control. Still, it was a huge improvement. I went from about 2/10 to about 6/10 in the same time period. I also need other symptomatic treatments.

We both took 1350mg daily for most of the 2 years.

After 2 years off Valcyte, our HHV6 titres started to climb again and we're back on Valcyte. We caught the reactivation relatively early this time so we are nowhere near as sick as the first time (daughter is still 8 or 9 /10) so we are taking 900mg daily and don't expect to be on it as long.

 

[JAH]

Hi Grigor,

I was treated for 7 months in 2007 with a starting doses 1800 mg/day for three weeks followed by 900mg daily. I was very sick from the medication and didn't improve until I was off Valcyte. This time around he started me at 225 mg/day and increased the dose over two months until I reached the therapeutic dose of 900 mg/day. Montoya no longer uses a high starting dose because of the number of severe bad reactions and generally treats for longer than 6 months. Probable 2 years for me. This time around I didn't suffer any down side from Valcyte with this slower protocol.
Best,
Gary

Gary,

I am on valcyte now and have been feeling bad, not sure if it is the valcyte or something else- can you describe some of your symptoms when the valcyte made you sick? I am on 450 mg, and just dropped dose to every other day. Also taking valtrex. Tried valcyte years ago and had no adverse reaction, different this time.

JAH

 

[SOC]

@JAH
I'm not Gary, but thought I'd chip in anyway.

My bad stretch with Valcyte looked very much like Immune Reconstitution Inflammatory Syndrome (IRIS) which is not totally beyond the realm of possibility if the infection is causing immune suppression of some kind. For me, the bad stretch lasted about 10-12 weeks (at various degrees of "bad") but when it was over, my ME was noticeably improved.

Do you take any supplements to help with inflammation?

 

[JAH]

@JAH
I'm not Gary, but thought I'd chip in anyway.

My bad stretch with Valcyte looked very much like Immune Reconstitution Inflammatory Syndrome (IRIS) which is not totally beyond the realm of possibility if the infection is causing immune suppression of some kind. For me, the bad stretch lasted about 10-12 weeks (at various degrees of "bad") but when it was over, my ME was noticeably improved.

Do you take any supplements to help with inflammation?

Hi SOC,

Thank you for the link to IRIS, could be what was happening. My cd4 levels have not been tested recently but have been low in the past. Basically felt like I got run over by a steamroller a couple of weeks after starting valcyte. Decided to go off all antivirals, and felt even worse! Then after about a week, started to feel better. Went back on valtrex (which never had an adverse effect) now back on valcyte every other day. Another symptom I had was a lot of weird itching- my toes, hips, scalp. That stopped when I went off the antivirals. (Also had been on testoterone, which I quit, thinking the itching might have been som allergic reaction to the cream, so not sure what effect that had on me) Only anti inflammatories I take are over the counter , Advil, Tylenol.

 

[SOC]

Hi SOC,

Thank you for the link to IRIS, could be what was happening. My cd4 levels have not been tested recently but have been low in the past. Basically felt like I got run over by a steamroller a couple of weeks after starting valcyte. Decided to go off all antivirals, and felt even worse! Then after about a week, started to feel better. Went back on valtrex (which never had an adverse effect) now back on valcyte every other day. Another symptom I had was a lot of weird itching- my toes, hips, scalp. That stopped when I went off the antivirals. (Also had been on testoterone, which I quit, thinking the itching might have been som allergic reaction to the cream, so not sure what effect that had on me) Only anti inflammatories I take are over the counter , Advil, Tylenol.

My reaction hit about 4 months into Valcyte treatment, so we were pretty sure it wasn't the Valcyte itself. It's harder to tell in your case.

I had itching, too. Also sensitive skin -- it was hard to wear anything that fit at all tightly, including waistbands. I thought it probably an infection/rash thing. I had shingles during that period, which causes burning and itching.

Since I was prepared for a tough patch with Valcyte, I decided to tough it out. That's not always a good idea, but my doc was okay with it in my case, so I went with it. It was miserable, but for me it was better to spend a couple of months miserable and then feel a lot better than to keep dragging it out over many months.

One of the rotten things about this illness is that so much is unpredictable. What works for some people doesn't work for others. The same treatment gives different reactions and side effects in different people. Ya just never know what to expect from one week to the next.

Good luck!

 

[Butydoc]

Gary,

I am on valcyte now and have been feeling bad, not sure if it is the valcyte or something else- can you describe some of your symptoms when the valcyte made you sick? I am on 450 mg, and just dropped dose to every other day. Also taking valtrex. Tried valcyte years ago and had no adverse reaction, different this time.

JAH

Hi JAH,

When starting on Valcyte the first time in 2007, Dr. Montoya used the protocol for treating cmv retinitis. This caused all my symptoms to worsen, especially my autonomic dysfunction. My blood pressure was frequently in the 85 systolic range with dizziness. I developed atrial arrhythmias including atrial bigemety. I had a very difficult time regulating my body temp. I basically felt I was going to die or actually wanted to because I felt so terrible.

I believe starting on the lower dose made a huge difference. Taking a dose every other day probably not as good as a smaller dose every day until you are back to baseline. Since it appears that most cfs doc who treat with antiviral do it for at least 6mo or longer, no particular reason to start out at a high dose. One of the concerns with the lower dose concept was the possible development of viral resistance. Dr Montoya didn't believe this was a problem. Another concern was dividing the 450 mg tabs in half which some people felt was toxic to the touch. I don't believe that Is a problem. Dr Montoya has treated some of his patients with much smaller starting doses because of their sensitivity. It took me a little more than two months to reach the therapeutic dose (900mg).

Best,
Gary



I am on valcyte now and have been feeling bad, not sure if it is the valcyte or something else- can you describe some of your symptoms when the valcyte made you sick? I am on 450 mg, and just dropped dose to every other day. Also taking valtrex. Tried valcyte years ago and had no adverse reaction, different this time.

JAH[/quote]

 

[JAH]

@SOC
@Butydoc

Thank you both for your replies. Maybe I'll try half a dose every day. Just been so tired. Can only move from bed to couch and barely keeping my eyes open..wish there was an easier way...

JAH

 

[JAH]

I am grateful to have Dr. Montoya and was almost brought to tears when I saw this sign at his clinic's new digs. As someone had got sick in 1987, I never thought I'd see a clinic at Stanford devoted to us, the most neglected patients in medicine. Thought some of you who can't see him in Palo Alto would enjoy this too...

 

[SOC]

@SOC
@Butydoc

Thank you both for your replies. Maybe I'll try half a dose every day. Just been so tired. Can only move from bed to couch and barely keeping my eyes open..wish there was an easier way...

JAH

Been there, done that. For me it was temporary (several months) and was followed by much improvement. Definitely worth it. I'd go through the whole thing -- bedbound, massively fatigued, shingles, flu-like symptoms, and more for several months -- to get the same amount of improvement again. Better a few months of miserable than another 10 years of it.

 

[Kati]

View attachment 6573
I am grateful to have Dr. Montoya and was almost brought to tears when I saw this sign at his clinic's new digs. As someone had got sick in 1987, I never thought I'd see a clinic at Stanford devoted to us, the most neglected patients in medicine. Thought some of you who can't see him in Palo Alto would enjoy this too...

I really wish though that he either called it by the full name and not the one symptom that the majority of the general public experience at least from time to time. It's almost inexcusable in 2014.

 

[Andrew]

View attachment 6573
I am grateful to have Dr. Montoya and was almost brought to tears when I saw this sign at his clinic's new digs. As someone had got sick in 1987, I never thought I'd see a clinic at Stanford devoted to us, the most neglected patients in medicine. Thought some of you who can't see him in Palo Alto would enjoy this too...

Even more amazing when we consider that Stanford medical people used to be among the most dismissive and belittling of CFS patients.

 

[Grigor]

Ok. My GP is very easy going with me trying new things. I'm sure she will agree on this too.

But are you guys able to take this med chronically?

 

[NK17]

Hi SOC,

Thank you for the link to IRIS, could be what was happening. My cd4 levels have not been tested recently but have been low in the past. Basically felt like I got run over by a steamroller a couple of weeks after starting valcyte. Decided to go off all antivirals, and felt even worse! Then after about a week, started to feel better. Went back on valtrex (which never had an adverse effect) now back on valcyte every other day. Another symptom I had was a lot of weird itching- my toes, hips, scalp. That stopped when I went off the antivirals. (Also had been on testoterone, which I quit, thinking the itching might have been som allergic reaction to the cream, so not sure what effect that had on me) Only anti inflammatories I take are over the counter , Advil, Tylenol.

I'll chime in too, since I'm on Valcyte.
Just started a couple of weeks ago.

For the record: before starting VGC at 225 mg I was experiencing rampant OI symptoms, such as major lightheadedness, feeling like almost passing out, brain fog etc.

I first decided to follow Dr. Montoya's newer low and slow protocol approach, based on what Butydoc and other patients had been reporting.

Last week I had a phone consultation with Dr. Kogelnik (my ME doctor) and decided to crank it up a notch, 450 mg x 1 day and over the next 2 weeks reach the 900 mg x day.

I plan to be on it for at least 6 months.

Today I'll have my first safety labs (metabolic panel + CBC with differential).

Dr K still prescribes the loading dose as if treating for CMV retinitis, but agreed to let me modify it ad hoc.

He reiterated his fear that at "homeopathic" doses antivirals might be dangerous due to a possible resistance. He also said that this is not proven yet, just a careful approach.

I personally think like SOC that in my case VGC (Valcyte, valgancyclovir) is a reasonable treatment, in light of all the crazy high IgG titers to all herpes viruses known to humankind and my poor quality of life.

I'm ready to face all sorts of possible temporary reactions because of all the horrible symptoms I've been living with for far too long.

I hope your doctor will help you in prescribing you any antiviral that might seem to fit your case; I hope he/she will be brave enough and see that there might be a light at the end of this tunnel and that PWME need to have doctors as brave as they are, maybe even more .

I'm also thinking to add some Famvir (famcyclovir) at some point, I may need a cocktail of antiviral, a well rounded synergistic treatment.

Good luck

 

[searcher]

For anyone who wants to find out more about the correlation between leptin and CFS, Montoya published his paper last year at http://www.ncbi.nlm.nih.gov/pubmed/23570606 What was most interesting to me was that leptin levels weren't elevated overall, but the daily levels corresponded with levels of fatigue. So leptin isn't likely to be a biomaker but looks to be important (maybe due to the LPS connection that @Vegas mentioned.)

The other research on inflammatory markers will be discussed at the symposium. He shared the results with the study participants but we shouldn't reveal them on a public forum. I think Butydoc's post is vague enough to be safe, but we should be careful to not jeopardize the publication. Dr Montoya's team had to take down the private video of the session about his findings because people started sharing it.

@Butydoc - Congratulations on being much improved! I had some liver enzyme problems with Valcyte but will likely try it again when the timing is right.

 

[JAH]

I really wish though that he either called it by the full name and not the one symptom that the majority of the general public experience at least from time to time. It's almost inexcusable in 2014.

In person and in public he always refers to the illness as CFS/ME.

 

[leokitten]

Thinking out aloud here but if valcyte works through anti inflammatory affects then it should work in more people and those with no active herpes infections.
I also wonder if this reduction in inflammation is because it's actively treating viral infections and these viruses are causing this inflammation.

It's not just because of it's antiviral properties, see recent paper:

Antiviral drug ganciclovir is a potent inhibitor of microglial proliferation and neuroinflammation

 

[NK17]

It's not just because of it's antiviral properties, see recent paper:

Antiviral drug ganciclovir is a potent inhibitor of microglial proliferation and neuroinflammation

@leokitten I haven't been able to read the above article, due to a paywall ...

Any chance you can share it with the rest of us who are interested and eager to read it?

I'm very much interested in VGC action as inhibitor of microglial proliferation and neuroinflammation antagonistic properties, I've been on it for the past 3 months.

Thanks,
NK17

 

[leokitten]

@leokitten I haven't been able to read the above article, due to a paywall ...

Any chance you can share it with the rest of us who are interested and eager to read it?

I'm very much interested in VGC action as inhibitor of microglial proliferation and neuroinflammation antagonistic properties, I've been on it for the past 3 months.

Thanks,
NK17

Here's a news brief summarizing the findings of the article: Ganciclovir Inhibits Neuroinflammation in Mouse Model of MS

 

[maryb]

Grigor, post: 435168, member: 13529"]Ok. My GP is very easy going with me trying new things. I'm sure she will agree on this too.
But are you guys able to take this med chronically?

Can I ask have you had viral testing from your GP?


Re the above article - If I had MS I would be on this drug now. One of the saddest cases I ever worked with in my career was a young woman who developed MS after a pregnancy. She deteriorated so fast she was in a chair being spoon fed within 12months, had to go into a nursing home for care, I doubt she is still alive. I became ill shortly after that. If it turns out that antivirals can help these patients - another criminal negligence one to chalk up to the medical profession.

 

[heapsreal]

Here's a news brief summarizing the findings of the article: Ganciclovir Inhibits Neuroinflammation in Mouse Model of MS

Is there any other evidence that other antivirals work like this? I ask this as there is information about MS patients responding well to valtrex but they are saying this is due to its effects on ebv, a possible cause of MS??