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valcyte

Messages
46
@SOC - i am alone. no family or support. no money to hire what i would need for caregiving. i strongly suspect i would have similar problems with it. it is a brutal protocol - blood work day before & day after the several hours short stay visit. i am getting hammered just existing right now.

i do know quite a few people now who have done infusions. wide variety of responses. it seems to be nicknamed "the hammer" with good reason.

everyone i know who has done infusions were higher functioning or had different viral profiles. the one person who also has really high cmv but was far higher functioning really struggled with them & couldn't finish. but got a good kick afterwards someone else with high hhv6 tolerated them fairly well but relapsed several months later.

all of them had vast support systems.

with me having such a strong reaction just over a month in on valcyte - would concern me about vistide as well. the one size fits all thing. i don't know how many people have gone through the infusions. i think it is a small data set, really. i got the sense that he didn't often see the type of reaction i had to valcyte. but i could be wrong about that...

if it is solely a question of drug side effects creating intolerable tinnitus - vistide is in the same category. i am still sensing in the aftermath of valcyte that it was potentially useful - both because of my initial response at the lower dose as well as the bit of lift i got when i stopped. in spite of the brain/T lingering effects.
 

SOC

Senior Member
Messages
7,849
I don't know your doctor, but he seems somewhat unapproachable. Your doctor is suppose to be working for you. He is suppose to explain to you what he is planning to do and why. You shouldn't leave his office before you have all of your questions answered. I suggest you write him a letter or e-mail and have him explain fully his recommendations.
You are absolutely right, but it's not going to work with Lerner. He's an 80-something old school doctor who has a my way or the highway attitude. I think he's fine with patients leaving his practice if they don't want to deal with that.
The problem is, he is the ONLY specialist in the area -- for hundreds and hundreds of miles. Our only other choice is to travel long distances by plane to one of the coasts to see another specialist. For many patients that's just not an option.

So while we all agree he should be more approachable and forthcoming, no one I've talked to has got him to budge an inch in that direction.

Don't get me wrong -- he does care a lot about his patients and works hard to help them improve. I am extremely grateful for what he did to bring my daughter from nearly housebound to fully functioning, and to give me a huge quality of life improvement. It's just that he's stuck in his ways and doesn't appear to be willing to change at this stage in the game. We moved on to another specialist we have to travel by plane to see once we were well enough to do that, but not everyone has that option.
 
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46
@Butydoc - lerner is old school. i was surprised he engaged in as much dialogue today as he did. i did not mention montoya - i knew if i did, lerner would shut down on me. but he absolutely would not entertain the idea of trying to slowly titrate the drug in to tolerance. he would't go into speculating - just that he considered it unsafe & that i was at the correct dose.
 
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i see soc just summed it up. he does care.. he probably would be retired if not for his commitment to this seriously ill population. but he is sticking with what he has done for all of these years & does not venture beyond it. i understand that. i was grateful to even have access since no one else will have us. & i am too ill to travel. i had booked to get into the clinic where klimas is at & i was higher functioning then & had to cancel.

he himself was ill from 1988-1996. which is how he ended up with both the protocol & the practice.
 

SOC

Senior Member
Messages
7,849
@SOC - i am alone. no family or support. no money to hire what i would need for caregiving. i strongly suspect i would have similar problems with it. it is a brutal protocol - blood work day before & day after the several hours short stay visit. i am getting hammered just existing right now.
I see the problem. :( :hug:

Let's hope this is a back up and go slower strategy. Perhaps the Valtrex will deal with whatever it's for (EBV? HSV?) and then your body will be better able to tackle the next thing. At that point your body might tolerate Valcyte better or you might be enough better to risk the vistide. It's discouraging to have to go very slowly with treatment, but sometimes that's the only path forward.

Hang in there.
 
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46
I see the problem. :( :hug:

Let's hope this is a back up and go slower strategy. Perhaps the Valtrex will deal with whatever it's for (EBV? HSV?) and then your body will be better able to tackle the next thing. At that point your body might tolerate Valcyte better or you might be enough better to risk the vistide. It's discouraging to have to go very slowly with treatment, but sometimes that's the only path forward.

Hang in there.

thanks... i have all 3 - ebv, hhv6, cmv - with cmv being highest. i did come off a year of hell with the way the marriage was blowing up while i was so ill. & the way it ended was highly traumatic - so that was my deeper relapse. i was hoping to start pulling out of it. but the viral titers continued to climb even as i rested/waited.. in what is at least a peaceful setting now.
 

SOC

Senior Member
Messages
7,849
thanks... i have all 3 - ebv, hhv6, cmv - with cmv being highest. i did come off a year of hell with the way the marriage was blowing up while i was so ill. & the way it ended was highly traumatic - so that was my deeper relapse. i was hoping to start pulling out of it. but the viral titers continued to climb even as i rested/waited.. in what is at least a peaceful setting now.
Believe me, I understand. :hug: The peace will help, I think, which is one positive. Valtrex has some effect on hhv6 and cmv, it's just not as good as Valcyte or Vistide. So hopefully you'll still make some progress on all three infections, it might just take longer.

Is Dr L helping you with anything else such as POTS? Are you trying any supplements? I know Dr L won't suggest any, but many patients are getting some improvement with supplements and dietary changes. It might be worth a try since you're not in a place to see a different specialist right now.
 

Gingergrrl

Senior Member
Messages
16,171
@nelle I am so sorry to hear this and I suspect you could benefit from a MUCH lower dose of Valcyte like what I am taking. Obviously I cannot give you medical advice, and do not want to contradict anything that your doctor advised you to do, (and I have never had tinnitus and not sure how this factors in.)

I have had horrific reactions to the tiniest micro doses of meds so I totally understand. I have also had some horrible side effects from Valcyte and still not sure that it will ultimately work for me (even at the micro dose) but it is the only chance that I have of tolerating it so I am trying again.

I also believe that Valcyte is working as another mechanism (immune mod, anti-inflammatory, etc) as I am IgM positive for EBV, VZV, and now positive on re-test for two enteroviruses. But I am completely negative on CMV and only IgG positive for HHV-6.

I wish I knew how to advise. Do you follow up with Dr. Lerner again?
 
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46
Believe me, I understand. :hug: The peace will help, I think, which is one positive. Valtrex has some effect on hhv6 and cmv, it's just not as good as Valcyte or Vistide. So hopefully you'll still make some progress on all three infections, it might just take longer.

Is Dr L helping you with anything else such as POTS? Are you trying any supplements? I know Dr L won't suggest any, but many patients are getting some improvement with supplements and dietary changes. It might be worth a try since you're not in a place to see a different specialist right now.

i had hoped to see some improvement without being in a constant awful situation - but that was october... that sent me deeper into severe. & for some reason i relapsed in january as well. hence my worst viral titers yet at the beginning of feb. i really don't know what to hope for...

lerner is treating the POTS. i am not formally diagnosed. i noticed it after i went severe last march. i bought a heart alarm watch - realized i had been crashing myself in the early months of the severe relapse. he has me on florinef - which along with electrolytes in my water seems to help retain fluids/blood volume. but i'm not sure how much it is helping POTS. but then, i am deconditioned as well at this point.

i'm not sure what supplements would be safe to go with. & yes, he would have a cow if he knew i was on any...
 
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46
@Gingergrrl - thanks. i hope you can find improvement with the micro dosing. for most of my life i have had issues with drugs - like so many of us. always having severe reactions to regular doses of meds.

lerner has nothing else to offer me. other than to stay on valtrex & rest. & see him once/month for labs.

i am in PEM & PENE today. the collapse into severe last march seemed more physical - & early titers showed more ebv & less hhv6/cmv. but with subsequent relapses & with valcyte beating me up so dreadfully, the neuro symptoms have become more pronounced. actually - all of the symptoms have worsened.

all i have done since october is rest/eat/tiny bit of computer. if i interact with anyone in person it is brief. housebound/bedbound - use wheelchair to get to food/restroom. had to give up crawling up the stairs in january to bathe as it was crashing me.

the tinnitus was quieter yesterday.. it's back up amped today, but i had expected to get hammered today. i am wondering about micro dosing/experimenting with valcyte... but am unsure.. today i can't think.. i just know that living like this is pretty unbearable.
 

Gingergrrl

Senior Member
Messages
16,171
housebound/bedbound - use wheelchair to get to food/restroom.

I am about at this level right now minus the tinnitus. Hoping we both feel better soon. Do you think you might try a smaller dose of Valcyte? My concern for you with this is that you would still need the safety labs and someone to monitor or it can be risky to do alone if Dr. Lerner is saying no.
 
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I am about at this level right now minus the tinnitus. Hoping we both feel better soon. Do you think you might try a smaller dose of Valcyte? My concern for you with this is that you would still need the safety labs and someone to monitor or it can be risky to do alone if Dr. Lerner is saying no.
sorry you are at this level - i hope you aren't as severe with the neuro cognitive & sensory stuff as well. i feel as if all i do is eat & rest. which is . all i do..
i actually did a micro amount of valcyte yesterday - my ears were screaming so much & then my eustachian tubes blocked - combo of the high dose of the drug/PEM/weather change... it took the edge off.. & later with accupressure & some tea, it all ramped down. oddly, i blew through my sleep meds at 3 am though.
i will still be seeing him once a month for my labs for valtrex.
i hope you see improvement. i am super discouraged just because i have been sick for so long & progressively declining with my mystery disease before the stress dropped me last year. to then be dropped a few more times.. to where i am now - it's hard for me to access hope..
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I wonder if a GABA supplement would help relieve the tinnitus? There's quite a bit of research on this...plus it might help with sleep too.
 
Messages
46
I wonder if a GABA supplement would help relieve the tinnitus? There's quite a bit of research on this...plus it might help with sleep too.

the T had quieted down a bit to its usual severe levels. at these levels it becomes the least of my problems. but it is a good thought. i had always thought GABA didn't cross the blood brain barrier.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
the T had quieted down a bit to its usual severe levels. at these levels it becomes the least of my problems. but it is a good thought. i had always thought GABA didn't cross the blood brain barrier.
Some say it can; others say it can't. As usual there is no good research or consensus.

I think most of us have a damaged BBB and it can cross somewhat. This lines up with what most doctors using it clinically have found. I think it's worth a shot.

Increasing GABA if you are low could also help with some of the other neuro issues and insomnia.
 
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46
i feel as if the valcyte really worsened my neuro symptom - so trying to
Some say it can; others say it can't. As usual there is no good research or consensus.

I think most of us have a damaged BBB and it can cross somewhat. This lines up with what most doctors using it clinically have found. I think it's worth a shot.

Increasing GABA if you are low could also help with some of the other neuro issues and insomnia.

thanks, emma. i suppose that is true about the porous bbb. ironically, i had just told myself, well, at least i'm sleeping. since i have severe insomnia even by ME standards. so as soon as i said that - my sleep has gone off the rails. dr lerner doesn't manage that. i got away with 1mg of ativan for a decade until i went severe. the relapse was preceded by stress & sleep shredding. it took a long time to stabilize me. did it with remeron & klonopin.

once valtrex started working i went on another sleep slide. i could initiate but not maintain. i cycled through almost everything at that time & still got caught out at 3 or 4 am. i asked the doc at the time if i could patch with ativan & he said fine. so it became 15mg remeron/1mg klonopin upfront &1 mg of ativan at awakening.

since the valcyte failure i switched to using .5 of klonopin at awakening. now the last 3 days i wake up at 3 with a storm in the back of my head & in the auditory areas.. i have kicked the 2nd dose up a bit, but nothing... i have a prescribing psychiatrist who lerner referred me to. but he seems to not do much insomnia work & wasn't interested in ME. i feel caught out again. which is what happened when i first relapsed. & then when i had the fall slide - i couldn't find anyone to help me.

i am one of those who gets less & less sleep once the cycle starts so that i start going without sleep. that is what happened a decade ago when my sleep switched from long & unrefreshing to hellish insomnia. i was in pretty good shape compared to current condition.
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
Interesting the first few days you did better on valtrex. I had that same experience but I think it was only one exceptionally good day like on the second day I started than it was downhill. So bad I quite after ten days and went back on amoxicillan. Been taking 2 to 3 500mg a day for a month and while they were not making me much sicker they were not helping either. At least up until 4 days ago. I've had a lot of pain in my uper spine and joints and that has abated. Also more energy and less PEM. Clearer head.
 
Messages
46
Interesting the first few days you did better on valtrex. I had that same experience but I think it was only one exceptionally good day like on the second day I started than it was downhill. So bad I quite after ten days and went back on amoxicillan. Been taking 2 to 3 500mg a day for a month and while they were not making me much sicker they were not helping either. At least up until 4 days ago. I've had a lot of pain in my uper spine and joints and that has abated. Also more energy and less PEM. Clearer head.

actually, when i went severe last year & found the viral reactivations, i titrated valtrex in & had no issues - started improving. it was valcyte that just crashed me. i am still having neuro problems & now sleep issues that feel like a storm in my head in the middle of the night. i am blowing right through my sleep meds. & during the day the brain is feeling quite the same way, unfortunately.

really glad the ABX is starting to help. used for ME or for lyme?
 

antares4141

Senior Member
Messages
576
Location
Truth or consequences, nm
actually, when i went severe last year & found the viral reactivations, i titrated valtrex in & had no issues - started improving. it was valcyte that just crashed me.

really glad the ABX is starting to help. used for ME or for lyme?
Interesting. Valtrex made my stomach (probably colon) hurt and I was spending most my time in bed. I never got tested for lyme dismissed it a long time ago. But started suspecting it like 16 years into my illness cause since I moved out of my moldy house 15 years ago nothing else has much worked for me besides mold avoidance but that only keeps me from being bed ridden. I'm at the point now where I have to sleep a lot and am only able to do the most important tasks. Like shopping, feeding myself. A simple chore like changing the oil on my truck is a pretty big deal for me. Any more work than that and I can easily end up with PEM so bad that when I try to stand I get dizzy and weak like if I am sea sick or something. That takes a day or two to sleep off. I couldn't really answer why I get some relief from my symptoms. Weather I've carried lyme's all these years or not I don't know.