Trying valcyte again, so far so good

[SOC]

Hey heapsreal and SOC, when you were feeling better on Valcyte, was it just your energy coming back or did other issues clear up too? I mean things like sleep issues, digestion etc.

I am curious because I know of one N=1 example of Valcyte use where a gal had her insanely high cholesterol normalize while also gaining back 50% of her pre collapse functioning. Given that is one of mY issues, along with nerve /muscle twitching, GI issues and sleep, I'm wondering if those all might be affected by an antiviral or just energy, which would still be great.

Thanks.

I think it varies from person to person. Daughter and I both got improved sleep, but I still take meds for sleep. We both got hugely improved cognitive function, but not quite back to 100%. We had flu-like muscle aches pre-Valcyte which is gone now. Neither of us had digestive issues, so can't help you there. Daughter got her energy back and doesn't have PEM. I don't have constant crushing fatigue, but I do get PEM.

I wouldn't expect a change in cholesterol to be the result of Valcyte treatment, but who knows?

I would say that the biggest changes were in flu-like symptoms -- exhaustion, muscle aches, sore throat, swollen glands, that feeble sick feeling -- and cognitive symptoms.

Daughter and I both still need treatment for orthostatic intolerance. That may be permanent -- or just slow to heal -- damage from a neurological hhv-6 infection.

 

[Sparrowhawk]

funny u mention cholesterol as my recent tests off valcyte show my cholesterol has gone up. Talking this over with a cfs friend the other day and we see this high cholesterol in us as a marker of oxidative stress as cholesterol and uric acid are used by the body as antioxidants. As for sleep it did start to improve although still on meds currently its gone whacky again. So yes generally most things improve. I think its easy for me to see after my post valcyte relapse.

cheers

Thanks for the responses both of you. That is especially interesting what you said Heaps about an anti-inflammatory response. I was trying to figure out why the liver would pump out so much cholesterol--and had chalked it up to Dr. Kogelnik's assertion that the viruses get in to all the nerve cells and can play havoc with any body system, sensor group, etc. and that the "tank is full" indicator for cholesterol just wasn't reading correctly so I kept making more cholesterol.

Even though I've knocked it down 100 points with some diet changes, my cholesterol is still so high Kogelnik called it "rediculous", it was originally at levels only seen in people with inherited hyperlipidemia (which is genetic -- I don't have that and mine has always been in normal range until this past year) but this gal's was twice mine. I take encouragement that hers normalized on Valcyte.

The fact that one antiviral, at least for some people who do respond, doesn't seem to effect a "total cure" to me seems to indicate we're all dealing with more than just the viral issue. Or as SOC suggested, once partially recovered, we still deal with the nerve/system damage from having been a virus playground.

 

[heapsreal]

Thanks for the responses both of you. That is especially interesting what you said Heaps about an anti-inflammatory response. I was trying to figure out why the liver would pump out so much cholesterol--and had chalked it up to Dr. Kogelnik's assertion that the viruses get in to all the nerve cells and can play havoc with any body system, sensor group, etc. and that the "tank is full" indicator for cholesterol just wasn't reading correctly so I kept making more cholesterol.

Even though I've knocked it down 100 points with some diet changes, my cholesterol is still so high Kogelnik called it "rediculous", it was originally at levels only seen in people with inherited hyperlipidemia (which is genetic -- I don't have that and mine has always been in normal range until this past year) but this gal's was twice mine. I take encouragement that hers normalized on Valcyte.

The fact that one antiviral, at least for some people who do respond, doesn't seem to effect a "total cure" to me seems to indicate we're all dealing with more than just the viral issue. Or as SOC suggested, once partially recovered, we still deal with the nerve/system damage from having been a virus playground.

If we look at what cholesterol is used for its to make hormones and cells etc etc so its possible that an increase in cholesterol might be away to help make more hormones and or repair cells etc im sure there is other uses of cholesterol. I think the cholesterol could be a secondary effect of valcyte ie the body doesnt have to repair cells as much so doesnt require as much cholesterol??? Just an educated guess though.

 

[Ema]

Hypothyroidism also can cause high cholesterol and infection can certainly influence thyroid function.

Ema

 

[john66]

I am at the point where I am considering valcyte or vistide, it would be abonus if cholesterol came down even a little. Unmedicated I am in the mid 400's.

 

[Sparrowhawk]

john66 that's about where I am now. Were your levels always like that or only after you got sick? I'm trying to learn if this is a valid potential subclass bio marker, or whatever the correct term is.

 

[heapsreal]

body uses cholesterol to make pregenolone and then pregenolone flows down stream to make other hormones. So many of us have a HPA axis dysfunction probably from immune/infections. So aprt of the brain is trying to slow down hormone production for whatever reason but another part of the brain is sensing a drop in hormones so sends a message to the liver to make more cholesterol to make more hormones. Its like one part of the brain isnt talking to the other. I think us with cfs/me understand how our brain is mixed up.

The other thing thast can go on is that we have alot of inflammation and oxidative stress and the body uses uric acid and cholesterol as an antioxidant to fight this issue.

So the above 2 scenarios could be going on, not saying its the case but its a posssibility. Also as Ema has said hypothyroidism can also do this and im sure theres other reasons. So im not sure its always a good reason to through a statin at high cholesterol unless maybe one knows its a definate issue for cardiac complications for them otherwise lower cholesterol with meds could possibly increase oxidative stress and increase cardiac risk factors. Most docs dont think outside of high cholesterol causes heart attacks, which isnt always right.

 

[Sparrowhawk]

Yes, agreed. I walked away from the last Dr. Because he was insisting on statins. I think for us that would be...bad.

Also think your suppositions add up to what is called answer D. "All of the Above" ... Inflammation protection, axis dis regulation, hormone deficit rear guard action, etc. all likely in combination add up to such high numbers.

 

[heapsreal]

i did post an early post on here about my docs appointment yesterday but my computer had a brain fart just before i finished it and of course i lost it, so heres a short version.

Blood work results 8 weeks post stopping valcyte, titres and nk function not available here outside of research studies.

liver/kidney function good.

t cells still activated so immune system still fighting something.

neutrophils still low 1.5 (2-7.5) looking at past results my doc say this probably is due to valcyte.

nk numbers alway within normal range but doc noted they were spike higher at the start of the year, this was when on immunovir and doc said it looks like it was doing something for me so to go back on and stay on.

Been back on valcyte for 1 week and staying on 450mg a day and staying at that due to neutropenia, also still on famvir 250mg bid.

Getting more immune testing for immunoglobulins and a more specific break down of these (i think)with another test i havent had before called a protein electrophoresis, but not really sure of what this test does, sounds very important though, lol.

Neutropenia probably the cause of ongoing sinusitis and remaining on augmentin for this but the BEG antibiotic spray i have been on for a week has helped things and greatly reduced post nasal drip.

I think i let him know my frustration and that i cant take valcyte forever so if i cant maintain the gains off valcyte then i have to start looking at possible disability, unless he comes up with a cure. Im hoping that improving my nk function with immunovir and maybe getting some type of treatment for neutropenia may help me keep my antiviral gains. Possibly going to go and see an immunologist in the future but i dont have much faith in specialist especially when we know more about cfs/me then many of them do.

If they just give me the dam prescription pad i would be right, one script for gamma globulin therapy, one for ampligen, one for cmx001, one for GSL(granulocyte stimulating factor), one script for xyrem, one script for human growth hormone, nearly forgot but one script for rituximab. A 25y/o nurse with c cups to do the infusions and sponge bath me, when my wife goes to work that is. And a disability pension paying $10000 a month until im 100% recovered. So im not asking for much, really!!!

cheers!!!

 

[john66]

Sparrowhawk, my numbers were always high,even in my late teens and early 20s, not nearly like this.

 

[Sparrowhawk]

Well this at least is encouraging:
"nk numbers alway within normal range but doc noted they were spike higher at the start of the year, this was when on immunovir and doc said it looks like it was doing something for me so to go back on and stay on."

Is immunovir something you can stay on long term, then, it sounds like, with no other repercussions or downsides?

 

[Sparrowhawk]

Sparrowhawk, my numbers were always high,even in my late teens and early 20s, not nearly like this.

Hrm, so this doesn't actually support my thesis but good to have the facts, thanks! Best to you as you work with that issue. If I have any breakthroughs with the cholesterol I'll post them to my intro thread or blog it.

 

[john66]

My own theory is that the cholesterol issue is related in some what, maybe like firemen to a fire. Not causative, butrelated in ways that are not fully understood. T3 is related, I would think

 

[Sparrowhawk]

Agreed, but like everything with this disease, there are so many subtypes and one wonders why in our three cases cholesterol is called out to the fire, and yet for others it isn't an issue. Topic for a different thread, no doubt.

 

[heapsreal]

Its been 2 weeks now back on 450mg of valcyte. I think it has stopped me spiralling down into the ground. The headaches have definately lessoned as well as the muscle aches, the fatigue has lessoned but i still feel a few paces behind where i was before stopping. My sleep has gone off and has gone ratty.

The BEG nasal abx spray has definately been good, it has stopped the post nasal drip and im just on minocycline which in the past wouldnt have worked this well on its own. I get the odd bit of congestion in my nose and the sinus and facial aches are also gone. The spray is quite irritating to the nose and i did start to get some blood when i would blow my nose, so with the third of the mixture left in the bottle i put an equal part of saline in to dilute it down and it seems to be alot less irritating.

Im still waiting on my orders. I have immunovir still on the way somewhere but im going to hold off and use inosine first and see if testing shows nk numbers going up like on imunovir. Also order lithium orotate and want to see if it can increase my low neutrophil count, i came across a few studies showing lithium does this and after speaking to a few people here who have tried the supplement Lithium orotate and showed a neutrophil increase i thought it would be worth a shot. I think getting my neutrophils up will be the secret to keeping my sinus infections away???

I will probably see my cfs doc in novemeber and get more testing done just before i see him. I hope to see my nk numbers go up and neutrophils go up.

cheers!!!

 

[heapsreal]

Finally got one of my supp orders, this one has the lithium orotate, so hopefully this increases my neutrophil count. I have taken it in the morning just so i can judge how it feels as i have heard it can make one sleepy. The bottle says 1 5mg pill a day, unsure of the dosage to use but will probably start using it at night as it may also help sleep, we will see?? If anyone has any idea on dosages to increase neutrophil counts i would appreciate it.

Been off the BEG nasal spray for over a week, some post nasal drip but not as bad as pre BEG spray, still on oral abx minocyclin and augmentin. I have repeats for the BEG spray so may use it again down the track but hopefully if the lithium increases neutrophils then sinusitis wont be an issue.

Still waiting for inosine to be delivered, anyone would think australia was on the other side of the world? I am using an immune product twice a day which has astragalus(5000mg), shiitake(3000mg) and olive leaf extract(2000mg), its called Ki and is suppose to do all the good things we want for our immune system etc. i have used it before and it helps for mild issues like cold etc but thought i would throw it in the mix, why not. what doesnt kill me, will make me strong or hooked up to a dialysis machine??

Overall ok, dragging my feet, had a migraine yesterday but its not as daily occurrence thank goodness but doing better now back on valcyte.

cheers!!!

 

[heapsreal]

QUick update on how im going. Doing ok back on valcyte, probably an 8 out of 10. Im working part time 30hrs a week. The last few weeks i have been exercising on my exercise bike which has a built in heart rate monitor, so i have been riding for 12 mins at this stage and making sure my HR is below 60% of my max HR, doing this seems to help me avoid any crashes. I did start off with just 10min for the first few sessions then increased to 12 mins. I feel relatively comfortable doing this so in another week i will put it up to 15mins. I could probably pedal alot harder and alot longer but i would crash, so hopefully doing it this way i slowly improve my fitness and maybe find the point at which induces PEM and then i will exercise below that. But my aim is to get to 20mins and do it atleast every second day but i will build up to this slowly and if im feeling crappy then its a no go.

Ok, i am pee'd off as i have been waiting ages for some inosine to arrive, apparently it was returned back to the place i ordered it from for some unknown reason by our aussie customs . I have been waiting for this so i can test my NK numbers and compare it to immunovir, DAM! SO now im going to order some AHCC from iherb which i should get within a few days and then test my nk numbers and see if these improve. I will probably order some inosine from iherb later on and see if i can test my nk numbers then too. Atleast this gives me a chance to try AHCC as its been on my to do list for along time.

So my plan is if i can find a few things that improve my nk numbers then when it comes time to stop valcyte my immune system can keep these dam viruses supressed.

AHCC plan is to take 3 tabs twice a day for 10 days and then down to 1 tab twice a day and do this for 2-3 months and than change to something else, probably immunovir and alternate between the 2 every few months.

cheers!!!

 

[Sparrowhawk]

Great to hear you doing better!

The ability to exercise at all is muy impressive to me, at the same time I have this voice in the back of my head saying "don't overdo it!" ... small steps.

 

[undcvr]

Did you get a chance to try shilajit yet ? Fulvic acid ? It's the real deal.

 

[Christopher]

Did you get a chance to try shilajit yet ? Fulvic acid ? It's the real deal.

What's this have to do with valcyte?