Trying valcyte again, so far so good

[heapsreal]

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.

Im hoping the heart monitor helps with avoiding overdoing it, plus being too long on an exercise bike gives me a sore bum. lol

cheers!!

 

[heapsreal]

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

Not yet, its on my list of things to try. First i want to see if the ahcc increases my nk numbers and then do the same with inosine, so the shilajit i will try after i have done all this??

cheers!!

 

[heapsreal]

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

What brand do u recommend? I see paradise herbs sell it well priced.

 

[undcvr]

about your nkc numbers, i know i must have forgotten but ldn did nothing for that ?

 

[heapsreal]

got my order of AHCC kinoko gold brand from iherb today.
Started with 3 tabs this morning and 3 tabs tonight and will do this for 10 days then maintenance of 1 tab morning and night from then on. Will get some more blood work done in about 3 weeks so we will see if this can increase my nk numbers. no adverse effects so far from AHCC.

cheers!!!

 

[heapsreal]

I have been back on valcyte 4months since the couple of months I had of it mid year . Valcyte stops me feeling sick, headaches, severe fatigue and fog etc but still have some lethargy and I have been function quite well with work I guess but still need to rest up when not working. The thing that can spoil the party is the sinus issues that can bring me to my knees, close to that today. All the investigation done seem to indicate neutropenia being the cause and this is exacerbated by valcyte.

Saw my doc yesterday and a a lot of blood work done. Hormones are all good now I have them all tuned up. Immunoglobulin testing and sub classes etc were all in normal range. Lymphocyte sub sets were ok always seem slightly activated, don't know if that will ever be normal.

Been using ahcc to try and increase nk numbers. They tested lower then they have in awhile so ahcc isnt working for me.

My neutrophil count has been getting lower and lower. This test showed it's still going down and probably the big reason for the ongoing sinus infections. I have been taking lithium orotate now for a few months as it's suppose to increase neutrophil counts, not for me. Another dud.

The thing that did surprise me was my doc said I had a fatty liver, liver markers were up. This is the first time tests have indicated this.

So with the worsening neutropenia and fatty liver, my valcyte journey is over for now. I will remain on famvir, currently using inosine and of course abx as sinus are hitting me hard today. I'm going to look at ordering more immunovir as I know this increases my nk numbers and look into cycloferon again. So I need to address the fatty liver and try and avoid meds which can be hard on it like NSAIDs, paracetamol. Upped my nac doses and will look at adding milk thistle for its liver improving effects.

So basically I scared shitless of what's going to happen off valcyte as it's been keeping me functioning. Was the last four months enough to drive viruses back? and is my immune system strong enough to keep viruses down which it wasn't four months ago.

I'm over the cfs thing now, can someone take it away now???????

Cheers!

 

[Ema]

I'm sorry @heapsreal! I know how it feels to be at the end of a treatment and feeling the void. It is really scary.

I don't know if 4 months is enough, but I hope so with all your other interventions too. Perhaps you can re-start again if your neutrophils go up? And you could maybe do a higher dose of Famvir too?

How low are your neutrophils anyway? Mine are typically just below range and Dr L has never said anything about it.

I had the best luck with sodium butyrate helping my liver. You might try that though it is a lot of capsules to take every day.

Did you have an ultrasound of your liver or is he saying fatty liver just based on your bloodwork?

Hang in there!

 

[maddietod]

Ugh. I'm sure lots of us are rooting for you........keep posting!

 

[heapsreal]

I'm sorry @heapsreal! I know how it feels to be at the end of a treatment and feeling the void. It is really scary.

I don't know if 4 months is enough, but I hope so with all your other interventions too. Perhaps you can re-start again if your neutrophils go up? And you could maybe do a higher dose of Famvir too?

How low are your neutrophils anyway? Mine are typically just below range and Dr L has never said anything about it.

I had the best luck with sodium butyrate helping my liver. You might try that though it is a lot of capsules to take every day.

Did you have an ultrasound of your liver or is he saying fatty liver just based on your bloodwork?

Hang in there!

Basing the fatty liver off blood work so got it early.
Neutrophil ranges are 2-7.5 . My latest test was 1.2 which is classed as moderate neutropenia. Test at start of year was 1.8, 1.4, 1.5 in August when I was off valcyte then.

My doc said that it's an option to go back on later but I think I need more then a few months off as I think it was ten weeks mid year I had off with no improvement in neutrophils. Also read neutropenia occurs due to ebv/cmv also?
If the liver enzymes improve I might consider adding valtrex to famvir ???

I'm at a loss at the moment plus can't think straight with this dam sinus crap, getting dizzy when I stand up.
Wish there was something concrete that would help immune system instead of the bs herbs from the Amazonian rain forest.

Also remember Montoya saying that relapses of valcyte improve again when they go back on and my doc said yesterday that resistance to antivirals just doesn't happen like abx, so that's good to know.

Cheers!!!

 

[Ema]

Basing the fatty liver off blood work so got it early.
Neutrophil ranges are 2-7.5 . My latest test was 1.2 which is classed as moderate neutropenia. Test at start of year was 1.8, 1.4, 1.5 in August when I was off valcyte then.

My doc said that it's an option to go back on later but I think I need more then a few months off as I think it was ten weeks mid year I had off with no improvement in neutrophils. Also read neutropenia occurs due to ebv/cmv also?
If the liver enzymes improve I might consider adding valtrex to famvir ???

I'm at a loss at the moment plus can't think straight with this dam sinus crap, getting dizzy when I stand up.
Wish there was something concrete that would help immune system instead of the bs herbs from the Amazonian rain forest.

Also remember Montoya saying that relapses of valcyte improve again when they go back on and my doc said yesterday that resistance to antivirals just doesn't happen like abx, so that's good to know.

Cheers!!!

Ugh. I hate dizzy more than just about anything.

My best friend struggles with sinus crap and was just telling me about using baby shampoo in a saline rinse to break up biofilm. Apparently, her doctor recommended it. I wonder if that might help you along with antibiotics? I assume you've been tested for MRSA and all that too?

Yes, I remember reading that about Valcyte helping again in the future too so that is good. I think there's a good chance that Famvir can hold your progress while you get these things sorted out. It's good to catch them early.

 

[Ema]

I wonder if you can take these injections which raise neutrophils along with Valcyte?

http://www.neulasta.com/starting-ch...lood-cell-counts.html?src=ppc&WT.srch=1&SRC=2

It's a synthetic granulocyte stimulating factor which increases neutrophils.

 

[Ema]

Or maybe not...side effects sound brutal.

http://www.cancercompass.com/message-board/message/all,25398,1.htm

 

[heapsreal]

I wonder if you can take these injections which raise neutrophils along with Valcyte?

http://www.neulasta.com/starting-ch...lood-cell-counts.html?src=ppc&WT.srch=1&SRC=2

It's a synthetic granulocyte stimulating factor which increases neutrophils.

Looked into it awhile ago, basically have to have cancer and an oncologist prescribe it. Off label it's like $1000 an injection which I think are at least weekly. Spoke to my cfs doc yesterday about this but fat chance??? It seems like all that can be done is to treat infections as they arrive and hope the neutrophils come up over time once off valcyte. Not sure if long term immunovir will bring them up??

 

[Ema]

Looked into it awhile ago, basically have to have cancer and an oncologist prescribe it. Off label it's like $1000 an injection which I think are at least weekly. Spoke to my cfs doc yesterday about this but fat chance??? It seems like all that can be done is to treat infections as they arrive and hope the neutrophils come up over time once off valcyte. Not sure if long term immunovir will bring them up??

You've heard of everything!

Neulasta looks like it is given once every 2-3 weeks. But that hardly makes it more affordable. And the side effects are scary...I bet there is a patient assistance program though if you are very very brave?

 

[heapsreal]

You've heard of everything!

Neulasta looks like it is given once every 2-3 weeks. But that hardly makes it more affordable. And the side effects are scary...I bet there is a patient assistance program though if you are very very brave?

Assistance type programs just dont happen here, probably the way the health system is here. A it too far off label. If I'm still neutropenia after being of valcyte for a few months I will chase things up with immunologist and see about the nupegen?

 

[Valentijn]

@heapsreal - Is your sinus issue in the form of congestion and infections? I had a 5 month sinus infection (and, needless to say, useless doctors) then tried using a Neti Pot. After a couple weeks the infection was pretty much gone, though it tried to come back once or twice when I stopped using the Neti Pot too soon.

Basically I did it three times per day during the nasty periods, then twice per day when things were still a bit stuffy but not looking infected. I'd recommend using it a week longer than you think you need to

 

[heapsreal]

@heapsreal - Is your sinus issue in the form of congestion and infections? I had a 5 month sinus infection (and, needless to say, useless doctors) then tried using a Neti Pot. After a couple weeks the infection was pretty much gone, though it tried to come back once or twice when I stopped using the Neti Pot too soon.

Basically I did it three times per day during the nasty periods, then twice per day when things were still a bit stuffy but not looking infected. I'd recommend using it a week longer than you think you need to

Not sure what u mean congestion or infection, its sort of both when its at full force. ct scans done mid abx course showed some inflammation and mucosul wall thickening which is also inflammation, so at the time nothing actually blocked? SO doesnt appear to be any obstruction, was neg to any fungal infections. I have done alot of sinus rinses etc and had some success with an abx sinus spray but the infections just return. SInuses clear up mostly with abx but return when stopped.

The low level of neutrophils is just going to make me more susceptible to these types of infections. I just have to wait it out for neutrophils to come back to normal after stopping valcyte and hope that cmv doesnt reactivate after stopping valcyte.

Thanks for replying val, i think i have basically exhausted any other way to treat it for the time being.

cheers!!

 

[Valentijn]

Not sure what u mean congestion or infection, its sort of both when its at full force. ct scans done mid abx course showed some inflammation and mucosul wall thickening which is also inflammation, so at the time nothing actually blocked? SO doesnt appear to be any obstruction, was neg to any fungal infections. I have done alot of sinus rinses etc and had some success with an abx sinus spray but the infections just return. SInuses clear up mostly with abx but return when stopped.

Part of my issue is nasal polyps, which keep stuff stuck up inside. The doc gave me one week of antibiotics (doxycycline), but then it came back a couple days after finishing those so I was banned from further antibiotics for it. Then she gave me a nose spray and told to come back in two months if the infection was still there

 

[heapsreal]

Sinus stuff has settled as it usually does after a few days on abx. Feel alot better and can think abit clearer now.
Im functioning at an 8 if all my cards are falling right ie sinuses are not playing up and no horrible insomnia but it all seems cyclic.

So my basic plan now is im on famvir still hopefully can keep cmv down. Im also on inosine for nk cells and im trying non flushing b3 as there is studies on it increasing neutrophil production, if this works then it should help sinuses?? Always sounds good in theory.

I also have a book written by dr atkins of the famous atkins diet and its about supplements. He mentions how he uses high doses of basic vitamins and minerals at the onset of an infection and then tapers them down to a lower dose for maintenance. SO nothing sexy as far as supplements go just old basics ie vit A 40000-80000iu, beta carotene 60000-120000, vit c 4000mg and zinc 200-400mg, thats his treatment plan for infectious diseases. Will start this in a few days. Except vit c, i will lower all the other doses considerably after a few days.

it looks rediculus the amount of supplements i take but?? got to keep trying something. atleast the simple supps are quite cheap. Plus my other antioxidants supps i always take, vit e , q10, lipoic acid, acetyl carnitine. Theres a few other things but thats the meat of it.

I think my initial post a few days ago about stopping valcyte had me in a tail spin as i think we are all worried about relapses plus the onset of the sinus infection just made me feel worse about the whole situation. Maybe im greedy not being happy with where im at?? dam it would be nice to be a 10 out of 10 again. Its been 12 yrs with cfs/me so expecting a 10 out of 10 is too much to expect. My inconsistent 8 will have to do, its alot better then the 3 i was at??

WOOHOO!
Cheers!!

 

[Ema]

It's not greedy, @heapsreal. You deserve to get to a 10!