Trying valcyte again, so far so good

[TheMoonIsBlue]

mm yes my supplier, its a crime that cfs is only recognised by a few doctors and medical authorities. My doc prescribed the valcyte and monitors me but trying to source it cost effective was a nightmare

cheers!!!

Yes. Yes, it is. I still dont see why it would not be covered for a proven infection like CMV. Thats what you are treating.

 

[heapsreal]

valcyte is only authorized here in australia to treat cmv infections in those with organ transplant and HIV, probably costing $30 a month as it would be covered by the government, all off label prescriptions are full price which is 10-15k for 6 months.

Famvir has done a good job for me so not sure how much valcyte will help but got to try these things. If nothing in the next few months, i will then think about coming off all antivirals and see if i can maintain my current level of function. Doing this is a scary thought, possibly going back to where i was a few years ago, but i can always jump back on famvir.

cheers!!!

 

[OnlyInDreams]

Conclusions. Valganciclovir 900 mg showed no superiority efficacy compared to controls (ganciclovir or preemptive) and equivalent efficacy to VGC 450 mg (statistical power: 94% and 97%, respectively) for CMV universal prophylaxis.VGC 900 mg was significantly associated with 3 times increase in the risk of leucopenia and 2 times increase in the risk of rejection compared with VGC 450 mg.

http://cid.oxfordjournals.org/content/52/3/313.full
this was the study i was referring to previously, but its a different situation but does show 450mg may be effective for some of us cfsers.

cheers!!!

Hey Heaps, my guess is that that only applies to CMV prophylaxis, for transplant patients, which may not require the strength of Valcyte that cfsers (with persistent HHV6 or CMV infection) would need to bring the titers down and recover. That's just an educated guess.

 

[heapsreal]

Hey Heaps, my guess is that that only applies to CMV prophylaxis, for transplant patients, which may not require the strength of Valcyte that cfsers (with persistent HHV6 or CMV infection) would need to bring the titers down and recover. That's just an educated guess.

You are probably right, i have also seen studies with acyclovir and valtrex used in the successful prevention of cmv in organ transplant as well. Going off these studies im gambling on it lowering viral load to cmv, but im also using famvir which i have had some good effects with. I sort of had 2 options, high doses for only a few months or lower dose for a longer period of time, i chose the second one. Its been about 5 weeks so far, i think i feel something positive going on, although i always seem to be chasing my tail when it comes to sleep, cant win them all.

cheers!!!

 

[SOC]

Hey Heaps, my guess is that that only applies to CMV prophylaxis, for transplant patients, which may not require the strength of Valcyte that cfsers (with persistent HHV6 or CMV infection) would need to bring the titers down and recover. That's just an educated guess.

I am guessing the same. After long or repeated (or long and repeated) infections, we've probably got infehctions in tissues that are rarely seen in transplant patients who are diagnosed and treated quickly. In particular, neurological infections are hard to get at without high doses. But I'm hardly a medical expert.

 

[heapsreal]

I am guessing the same. After long or repeated (or long and repeated) infections, we've probably got infehctions in tissues that are rarely seen in transplant patients who are diagnosed and treated quickly. In particular, neurological infections are hard to get at without high doses. But I'm hardly a medical expert.

I know exactly where my infection is, its on the go to sleep button in my brain, lol.
I see my doc in 3 weeks, i will ask him more about it and also check how my liver function etc is going since on valcyte. I dont know if its worth doing higher doses for a month or 2 and then drop back to 1 tab a month. The valcyte i have just wouldnt really last me 6 months using that way and thats sort of a minimum time frame for using it and now they are recommending longer treatments with it. I dont know??? I will see how i feel after being on a low dose for 3 months.

I suppose im doing valcyte Economy style.

cheers!!!

 

[heapsreal]

Been 7 weeks since i have added valcyte to my famvir. I think my general stamina has improved, brain fog has lessoned. ALthough sleep is still abit off i have had some periods of sleeping drug free which is very rare, its actually been solid deep sleep. A few nights now i have woken up at 3am, normally i would be awake until the next night but it has got to 8am and a wave of fatigue(a good kind) has come over me and i have fallen asleep for 3 hours and woken feeling refreshed. I have had a couple of episodes during the day where i have had a nap and its been deep sleep type nap. For me this type of sleep is unheard of. ALso my sleep meds seem to be giving me better sleep, so maybe an indication that things are improving. My shot gun approach with supps (mito supps, antioxidants, methyl b12/folate) i think has also been playing apart but still early days for this. I have been doing some easy work outs and had no pem as compared to what would happen to me before. I feel like im turning the corner, i hope its not just another up period thats followed by a crash, it does feel different to past short term improvements. I have the odd day thats crappy but seem to be getting more consistently good days and im managing work alot better and not coming home exhausted/tired and wired. Touch wood, fingers crossed.

I will keep everyone updated here and on my shot gun thread.

cheers!!!

 

[heapsreal]

been about 11 weeks so far on valcyte/famvir and so far so good, staying at a steady 8 out of 10. Still have a few aches and pains and think im just starting to get over these muscle spasms i was getting in my shoulder blades which is a new symptom for me since on valcyte.

Still exercising and slowly increasing the resistence but being careful. I think my whole metabolism is changing, starting to drop weight and not looking so much like a potato couch and people i havent seen for awhile are asking me about my weightloss, not really trying, just eating low carbs like i always have.

Sleep isnt perfect but i seem to be able to function after a crappy night, last night i had 3 hours of the lighty yucky dreamy type sleep, was going to try and have a nap this morning but did a workout instead with no dramas.

With my supps i have stopped the b12 a few weeks ago and havent noticed any real changes and run out of ribose a few days ago and wont replace it straight away and see how i function with out it, still using creatine though. Have only added curcumin for the muscle pains which maybe helping, definately helping my creeky joints. Still going strong with antioxidants and mito stuff like carnitine/q10 etc

cheers!!!

 

[heapsreal]

nearly 4months on valcyte /famvir combo, no improvements since i last posted here but i also havent gone backwards or crashed since being on valcyte. I have days where i feel extra exhausted (overdoing it abit)but a day of resting and im fine. Still been able to exercise where im doing weight training where im keeping the volume of work down and slowly increasing the amount of weight i can handle also making sure not to get too out of breath which i think helps as i think its our aerobic fitness that is 'broken'. Still have the odd crappy nights sleep but im able to function ok after a crappy night, before anything less then 5 hours and i would be a mess, today i have had about 5 hours sleep and feel ok, enough that im going to do a light workout soon. I have reduced the amount of nights i use benzo's but have just replaced them with low doses of seroquel or trazadone with an antihistamine.

Creatine, ribose, acetyl tyrosine and NAD(acetyl tyrosine and NAD-use intermittently) definately help with an energy boost as well as dhea and pregnenolone. I added the pregnenolone again to also help with inflammation as joints feel stiff and creeking etc, so along with curcumin it seems to be helping with inflammation some.

So i have about 4-5months worth of valcyte left so we will see how things pan out.

cheers!!!

 

[undcvr]

wth is 'brain sizzle' sounds like a dish I once had overseas.

... i like secret sources ...

 

[heapsreal]

wth is 'brain sizzle' sounds like a dish I once had overseas.

... i like secret sources ...

LOL, my brain is probably like a dish u had overseas, it sizzles(like a frying pan) when i have been awake for 24 hours.

 

[heapsreal]

Touch wood, fingers crossed etc etc i only realised the other day that i havent 'crashed' since being on valcyte which is about 5 months, normally i would have had a couple by now. I do have the odd day where i have to pull back abit and hibernate for a day and usually from overdoing it or after my run of shifts at work, but its not a crash more like running out of petrol and needed to fill up again then im ready to go. I feel that im on top of the viral side of things and the fatigue i have left is adrenal fatigue. im starting to make some improvements by treating this adrenal fatigue.

I have been monitoring my temp since treating adrenals because low adrenal function can cause hypothyroid symptoms which also causes fatigue. generally i wake up feeling abit dusty, temp under 36c and i apply my pregnenolone cream which kicks in and i feel somewhat normal, temp then up close to the 36.5c. Not every afternoon but a few afternoons i get that dip in energy, fatigue feeling and my body temp has been low again, yesterday when this happened i added a small amount of preg cream( so sleep wasnt hampered) and 1/2 hr later my energy picked up and so did my temp.

I think because many of us have had the stress of infections for so long that we are left with adrenal fatigue, i think this might partially explain why some get partial improvement with antivirals and maybe treating adrenals could improve this recovery.A few things written about valcyte have said that people have had to wait for several months after valcyte to notice further improvement, i wonder if this time has allowed for adrenal hormones to recover and the reason for this further improvement.

cheers!!!

 

[undcvr]

I too monitor my body temperature regularly everyday. Here in the US the target is 98.6, I generally don't come anywhere close to this it is usually about 97.9.

My other question is this though, what happens if it is not adrenal fatigue or thyroid fatigue ? What happens if it is an immune system attacking our glands and organs instead as an autoimmune condition.That's why so many body systems are involved and that is what makes CFS such a generalised condition.

 

[heapsreal]

I too monitor my body temperature regularly everyday. Here in the US the target is 98.6, I generally don't come anywhere close to this it is usually about 97.9.

My other question is this though, what happens if it is not adrenal fatigue or thyroid fatigue ? What happens if it is an immune system attacking our glands and organs instead as an autoimmune condition.That's why so many body systems are involved and that is what makes CFS such a generalised condition.

I dont know, they could be attacking our glands?? i suppose the treatment would still be the same, that is replacing the hormones missing.

 

[heapsreal]

I too monitor my body temperature regularly everyday. Here in the US the target is 98.6, I generally don't come anywhere close to this it is usually about 97.9.

My other question is this though, what happens if it is not adrenal fatigue or thyroid fatigue ? What happens if it is an immune system attacking our glands and organs instead as an autoimmune condition.That's why so many body systems are involved and that is what makes CFS such a generalised condition.

I know there have been studies showing cfs/me have a dysregulated hypothalamus, this could explain why there are many hormonal issues and other systems that regulate the body??

 

[ukxmrv]

It's why I really don't like the term adrenal fatigue. It gives the impression that the adrenal gland is just a bit tired and doesn't sound like it could be a direct viral action (or something like that)

If you are on an anti-viral and you think that the adrenals are recovering it would tend to point to the idea that a virus has somehow interfering with that area?

Just thinking about those shrunken glands in CFS and wondering if it took months for them to regenerate tissue once the offending virus was under control? Sorry, just thinking out loud here.

 

[heapsreal]

It's why I really don't like the term adrenal fatigue. It gives the impression that the adrenal gland is just a bit tired and doesn't sound like it could be a direct viral action (or something like that)

If you are on an anti-viral and you think that the adrenals are recovering it would tend to point to the idea that a virus has somehow interfering with that area?

Just thinking about those shrunken glands in CFS and wondering if it took months for them to regenerate tissue once the offending virus was under control? Sorry, just thinking out loud here.

I agree that the term adrenal fatigue isnt a great one but its so entrenched that i just continue with that term. My idea of adrenal fatigue is dysfunctional adrenal hormones cortisl and dhea. From what i have read, it can happen for a variety of reasons, in cfs it can be from viral infections, in others it can be from constant work stress with deadlines etc etc. dont get me wrong, i do think adrenal fatigue is cfs/me but i do think people with cfs/me can be also highly at risk. For me removing the stress which is cmv virus is definately helping me as well as improve my adrenal hormones(as well as treating adrenals too). I do think for a diagnosis of adrenal fatigue, atleast moderate to severe requires testing dhea/cortisol.

cheers!!!

 

[heapsreal]

interesting bit of info on infections and adrenal fatigue from another forum and briefly explains how they effect each other.
Chronic infection alters the function of the immune system. Not only does this directly tire the individual concerned, the secondary effects are that the adrenal glands get hit hard. Immune cells communicate with one another through the release of localised hormones called cytokines; the only problem is that these cytokines increase the pituitary gland's signal to the adrenal glands, and directly challenge the glands themselves. This all adds up to a heavy workload for the adrenal glands, who were already struggling to keep pace with menial day-to-day demands. The irony is that adrenal fatigue makes fungal infections much more likely, as discussed here. The bottom line is that, regardless of how well you remove psychological stressors and nourish your body, if your adrenals are being hammered all day from the effects of a chronic infection you are unlikely to get anywhere.

http://www.adrenalfatiguefocus.org/the-number-one-reason-people-dont-recover.html

cheers!!!

 

[ukxmrv]

The problem with that quote is that there is nothing to prove it or back it up for CFS and ME in particular. It's why I'd throw the term "adrenal exhaustion" out the window and pretty much ignore the theories. I don't think that it is enchanted just because there are a lot of webpages on it. Like the "emperors new clothes" having ME is a good BS detector.

What is happening with ME and CFS may be entirely different to what the "adrenal exhaustion" people are describing.

It may be that was ME and CFS (of an acute, viral onset) the virus is the problem. Either by directly attacking the glands or as a result of the cytokines. The adrenals may not be "exhausted" by the cytokines as in the quote. We just don't know for ME and CFS.

I've never found (reading the above) that having low cortisol makes me any more prone to fungal infections (for example). I tend to filter out websites that claim to provide so called factual information that claim to tie things together but go directly against my experience.

It's going to be different for us all. For example the quote you gave my hit the right note for some.

 

[heapsreal]

i copied and pasted the above as it explained it better then i could in how low adrenal hormones occurr in the presence of infections. i noticed the fungal infection thing too, it wasnt meant to be precise but a guide.
I dont think the adrenal glands are exhausted as such but the term is just in such common use. A dr mariano had a forum and is theory was that there was signalling issues involved in 'adrenal fatigue', so he was saying it wasnt coming from the adrenals but the signal from the hypothalamus was causing the adrenal hormones to be dysfunctional.

There are enough people on here with cfs/me that have dysfunctional levels of adrenal hormones to say its a common issue amongst us. My own experience is that along with infection/immune abnormalities showing up in tests, i have also had abnormal levels of dhea/cortisol which was getting worse the longer my cfs continued going by the record of hormone tests i have kept over the last few years. i have also had improvement with dhea and pregnenolone, so this is pointing me towards adrenal hormones being an issue for myself.

Adrenal fatigue, adrenal exhaustion what ever word one wants to call it is just a play on words but there does seem to be a number of people with abnormal adrenal hormones. Im not particularly concerned if the adrenals themselves are actually fatigued or not, more about getting results from treating this dysfunction.