valcyte

[nelle]

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.

i am severe, so i understand how miserable it is & how easily one can go into PEM. it sounds like you have a lot going on.. mold illness, possibly lyme, maybe ANS issues like POTS since you are having that dizziness & weakness upon standing. is there any way to get tested for some of this? there are things that can help - meds that can bind mold (not sure how that works). maybe find a lyme literate doc & get tested. finding someone to do viral testing is harder. as for POTS, if you just check your heart rate from lying to standing - if you are way up 20-30+ from changing positions, you may have that. & there are meds that will help.

the probiotics always help. i notice if i don't take it. & doing that other avoidance is a good strategy. good luck to you.

 

[nelle]

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.

ema, do you know if i can take GABA while using benzos for sleep? also i suspect the doctor will switch remeron for seroquel, so i don't know how that would impact it. are there other things i can do to calm the brain issues down - i am not sure if it is inflammatory or neuro-excitability or both. as sleep slides, the h-p-a axis is coming more unglued

 

[Ema]

ema, do you know if i can take GABA while using benzos for sleep? also i suspect the doctor will switch remeron for seroquel, so i don't know how that would impact it. are there other things i can do to calm the brain issues down - i am not sure if it is inflammatory or neuro-excitability or both. as sleep slides, the h-p-a axis is coming more unglued

There really isn't any good research on this topic unfortunately as usual. There aren't any documented contraindications to my knowledge.

I know people that have used both, including myself during my Valium taper. I obviously can't say one way or another what you should do, but I think if it were me, I would give it a try with a low dose because the potential for benefit seems pretty great for so many of your issues.

It won't solve the low cortisol problem though...believe it or not, having sufficient cortisol really does improve sleep. With low cortisol, it's really hard to sleep because of adrenaline surges.

 

[nelle]

There really isn't any good research on this topic unfortunately as usual. There aren't any documented contraindications to my knowledge.

I know people that have used both, including myself during my Valium taper. I obviously can't say one way or another what you should do, but I think if it were me, I would give it a try with a low dose because the potential for benefit seems pretty great for so many of your issues.

It won't solve the low cortisol problem though...believe it or not, having sufficient cortisol really does improve sleep. With low cortisol, it's really hard to sleep because of adrenaline surges.

thanks, ema.. so many things wrong with us at once. i still can't get the doc to call me back about my current sleep slide. i am getting more funky ANS wackiness with less sleep.. & then it circles onto itself..

i did saliva cortisol but it ended at midnight.. i had low in morning & noon but elevated at 6 & normal at midnight.

i pulled this from "no poster girl's" blog on insomnia: this is what feels like is going on with me

"When I was crashed for the second time in two months at the end of January this year (both times because of my sleep drugs failing), I asked Dr. Cheney what I could do to try to help myself bounce back faster. One of the things he suggested to me was that I could increase my inosine. I added some at night, instead of upping the morning dose, and found that it helped me sleep. So I shifted the first dose to the evening and the second to the early morning, at the same time I take my second round of things that help me sleep.

When I went to see Cheney in April, I asked him why inosine helped my insomnia. He explained that inosine produces uric acid, which scavenges peroxynitrite. Peroxynitrite, he told me, is produced in a cytokine storm in the brain, which, among other things, is a mechanism of sleep disturbance. Blocking that cytokine storm with inosine, then, helps me sleep.

This lead him into a further discussion of cytokine storms and what else counters them. Artesunate is an NF-kappa B inhibitor, and it sits at a choke point for a cytokine storm, so it should help with sleep as well. Low dose naltrexone, which I’m also on, can inhibit the cytokine synthesis of microglial cells, and encourages the body to produce its own opioids, both of which interfere with the cytokine storm.

So the fact that inosine and LDN, both of which I’d tried before my appointment and both of which helped me sleep, indicated to Dr. Cheney that a significant part of my insomnia was caused by a cytokine storm in the central nervous system. The cytokines in the central nervous system, he then explained, come from those previously mentioned microglial cells.

After that, Dr. Cheney explained what else he thought was behind my insomnia. He said that if we did a MRSI (magnetic resonance spectroscopy) scan of the brain, it would indicate what is called a lactate peak in the lateral ventricles of the brain, which should not be present, but commonly is in ME/CFS.

Interestingly, Dr. Cheney said a lactate peak in the brain is associated with both feelings of anxiety and sleep disturbances (I can’t currently find a cite for the latter). I asked him if this could help to explain that feeling I had in Chicago in 2004 that something terrible was about to happen. He remembered that being part of my case and said indeed, a feeling of doom would be consistent with that physiological symptom.

Because my body is running in a low-energy state because of loss of mitochondrial function, he went on to say, it isn’t producing enough ATP for my brain. So, to compensate, he said, my brain is partially running on adrenaline – and it’s rather difficult to sleep when one’s brain is running on adrenaline.

And if there’s a problem with mitochondria, he told us, there will inevitably be a problem with magnesium depletion. So supplementing magnesium should help with sleep, and a number of other problems as well. (And it did, as I mentioned in the previous insomnia entry.)"

it should be noted that this information came from no poster girl's blog under weapons grade insomnia:http://nopostergirl.com/
specifically:http://nopostergirl.com/2011/06/22/my-weapons-grade-insomnia-part-ii/

 

[nelle]

@Ema - how have you addressed your cortisol issues?

 

[Ema]

@Ema - how have you addressed your cortisol issues?

I replace with hydrocortisone. It's not perfect or easy but a lot better than low cortisol symptoms. I know I saw your results but I can't remember exactly now.

I think artesunate/artemisinin might be a good choice for you but I'd really like to see you have IgeneX Lyme testing too. If you do have Lyme, art might make you herx. Also, art needs to be pulsed, no more than a few days in a row otherwise the stomach can create an enzyme to deactivate it.

There are lots of roads for you to explore yet that all offer potential for healing. Valcyte may be on hold but that doesn't mean all hope is lost. It just means other new beginnings.

 

[nelle]

@Ema -wow, so much to think about for one who lies with eyes covered & eats & that's about it.. point of entry seemed to be the high viral titers once i went severe. valtrex brought ebv in immediately. i was under such stress though.. hhv6 went back & forth while cmv kept climbing.

it make sense to have that further lyme testing. though i know i have been sick since puberty now with ME - all in retrospect. i am in a situation where insurance changed & not sure what to do.. about all of that - finding a doc is going to be hard. plus one that is lyme literate & open to learning ME from someone without a brain & a 5 minute conversational limit.

didn't think that artesunate could be used with valtrex. i feel so beat up.. this last year was brutal in so many ways.

how did you test for cortisol to get replacement. i talked to my integrative doc about the saliva results & she wasn't thinking AI. & was deferring to lerner anyway. the results seemed consistent with what is seen in ME.

i get hurt just leaving the house - the thought of testing.. of course i am on so little sleep right now as well.. i didn't do the tilt table test a year ago because of how ill i was then. & now that looks like a far better state of health.

 

[antares4141]

i am severe, so i understand how miserable it is & how easily one can go into PEM. it sounds like you have a lot going on.. mold illness, possibly lyme, maybe ANS issues like POTS since you are having that dizziness & weakness upon standing. is there any way to get tested for some of this? there are things that can help - meds that can bind mold (not sure how that works). maybe find a lyme literate doc & get tested. finding someone to do viral testing is harder. as for POTS, if you just check your heart rate from lying to standing - if you are way up 20-30+ from changing positions, you may have that. & there are meds that will help.

the probiotics always help. i notice if i don't take it. & doing that other avoidance is a good strategy. good luck to you.

Dizziness is mostly when I push myself and go into PEM. Ordinary I am clumsy, tend to trip over things more, there is the uneasy feeling I can't explain when I'm reaching for things and stepping over things. It's like the mind is having difficulty communicating with my mussels. I did ask my gp to test for lymes and he wouldn't. My dad is retired internal medicine so I got him to prescribe the antibiotics and antivirals. When you haven't worked for 18 years you have to be careful how you spend your money. Although if I went to an alternative practitioner 16 years ago and he tested for lymes back than and it came back positive could have saved me a lot of grief. I used to have the racing heart low bp thing until I switched to distilled water. You would think a pet scan might be able to show where the elevated blood flow is going to. I presume some part of the digestive tract. But knowing which part you would think would be valuable information for researchers. Cause they could narrow their focus on it.

 

[nelle]

@antares4141 - i sure wish things were easier for all of us.. so many of us are restricted by finances or support concerns. as if the disease was not hard enough. & we do the best we can. thank goodness for support forums like this. i really hope that soon there will begin to be better understanding & that it may lead to better quality of life for all of us.

 

[nelle]

I have been absent around here but thought I would just stop in & update. April as been pretty brutal on me. The areas in my head that got kicked up while on Valcyte have remained problems. It's almost as if I am in a hyper inflammatory state - that is set off by so little or seemingly nothing at all. So that means the eyes/sinuses/auditory/base of skull & top of head continue to be issues.

The April weather changes really set it off. I guess I've been off Valcyte for about a month. I was experimenting with micro dosing early on after I stopped drug - hoping it may act to calm inflammation. But I got pushed into a sleep slide. So I stopped & dealt with that issue

Overall I am more sensory sensitive still as well then I was prior to the drug. & much more fatigued & fogged when I am not experiencing the pressure in the other areas. It seems every afternoon contains a "death" nap

So. Not sure this will be helpful to anyone. Insurance has changed so dr Lerner is not covered now. He still had me on valtrex but I think the viruses just laugh at that now. He wanted me to do vistide but even if I had coverage & weren't alone, I can't say I would do it at this point. Even though so ill, I can't see suffering more.

My bottom line advice to anyone knowing what I know now - start low & go slow. Thanks again for all of your help. Hope spring is going far better for all of you. Xoxo

 

[antares4141]

I have been absent around here but thought I would just stop in & update.
My bottom line advice to anyone knowing what I know now - start low & go slow. Thanks again for all of your help. Hope spring is going far better for all of you. Xoxo

I started trying valtrex again for about two days and got sick again. So I stopped again. Starting to wonder it's doing any good at all. Certainty doesn't feel that way.

 

[nelle]

I started trying valtrex again for about two days and got sick again. So I stopped again. Starting to wonder it's doing any good at all. Certainty doesn't feel that way.

Did you start with very low dose? I found that was the key to managing the initial worsening when I started valtrex

 

[Sushi]

Did you start with very low dose? I found that was the key to managing the initial worsening when I started valtrex

How low a dose did you start with? I was just given a prescription for it today. I am to work up to 2, 500 mg a day, but will probably cut the tablets and start lower.

Sushi

 

[antares4141]

How low a dose did you start with? I was just given a prescription for it today. I am to work up to 2, 500 mg a day, but will probably cut the tablets and start lower.

Sushi

I broke a 1000 mg tab in half took one in the morning and the other in the evening. I'm tempted to try again now that I'm feeling better. Was feeling pretty bad for a while after taking them. Not totally sure it was all the medicine. Always so many factors I have to consider like who's house what types of businesses I have been inside weather it was a bad idea to go to a restaurant and trust their food. My seemingly being sensitive to just about all foods except for maybe meat and fried potatoes which I need to stop eating. Staying in my dad's house with the ac on. etc. etc.

 

[nelle]

How low a dose did you start with? I was just given a prescription for it today. I am to work up to 2, 500 mg a day, but will probably cut the tablets and start lower.

Sushi

i didn't have capsules.. mine were tablets - 500 mg. i may have started with 1/4 or 1/8th of that.. & titrated up. i was able to titrate to 4 grams/day within a month or so. lerner does it based on weight. he wanted a faster dosing but i didn't want to push through worsening. i wish, as i noted before, that i had done that with valcyte.

 

[nelle]

I broke a 1000 mg tab in half took one in the morning and the other in the evening. I'm tempted to try again now that I'm feeling better. Was feeling pretty bad for a while after taking them. Not totally sure it was all the medicine. Always so many factors I have to consider like who's house what types of businesses I have been inside weather it was a bad idea to go to a restaurant and trust their food. My seemingly being sensitive to just about all foods except for maybe meat and fried potatoes which I need to stop eating. Staying in my dad's house with the ac on. etc. etc.

having so many variables makes it really hard ... we get hit with everything & it can be impossible at times to (most times) to figure out what caused what. maybe if you start low & don't move dose up until you feel you are at your normal baseline?

 

[Gingergrrl]

@nelle Can you still attempt the Valcyte at a micro dose or is that option off the table? I may attempt again (not now) at literally like 1/64 or 1/128 of a pill with my Dr's permission if we can get other issues under control first.

 

[nelle]

@nelle Can you still attempt the Valcyte at a micro dose or is that option off the table? I may attempt again (not now) at literally like 1/64 or 1/128 of a pill with my Dr's permission if we can get other issues under control first.

i hope you can get your other stuff under control & try again. & i hope you are doing better than i am. i am still underwater & struggling with .. all realms. today we had a weather change & all the areas valcyte hit in my head - killed me...

i actually started experimenting again with micro dosing valcyte - i have only done it twice at crumb size doses spaced about 3 days apart. 1st dose seemed to clear my head. the 2nd dose i had one of those death naps in the afternoon... i think that was a couple of days ago. i will be starting with a new ME specialist, so will see what she wants me to do.

 

[antares4141]

i didn't have capsules.. mine were tablets - 500 mg.

Were you using Valtrex or Valcyte? I suspect I should have tried doing the latter as opposed to the former. Seems that is what everyone on the list is using.

 

[antares4141]

having so many variables makes it really hard ... we get hit with everything & it can be impossible at times to (most times) to figure out what caused what. maybe if you start low & don't move dose up until you feel you are at your normal baseline?

Yes my problem exactly we (at least some of us), have so many sensitivities that need to be addressed. For instance mold. If I am in a moldy dwelling I have to factor it in. I suspect their are long lasting residue effects also that have to be factored in from mold exposure.

I've learned this cause I at times have exposed myself for instance in my dad's home in fl I think the a/c causes me problems. Than also in NC he has a 70 year old home he summers in. He's 84 and seemingly impervious to the mold inside while If I go in for a few minutes the effects are subtle. Difficult to distinguish. I never developed the talent of being able to "feel the burn". If I stay inside for a week or two which I foolishly have done in the past it will take me a week or so (bedridden) to "detox" for lack of a better explanation.

I don't know weather it be from toxins or some other dynamic. Fairly confident there is a recovery period your going to have to go through after an exposure like this. Just how much recovery is possible I don't know either. I've never recovered fully from my idea of "extreme' avoidance which is much more lax than those who follow showmaker or Eric Johnson.

I finally got a trailer that is extremely conducive for folks like us. http://www.livinlite.com/7x18vrv-overview.php No wood in it at all. Adzel or plastic panels on the inside walls which discourage mold. (I hope). I've had it in NM and here in NC. I seem to be doing better here in NC interestingly than NM. Suspect cause the air being more humid holds less airbore particles such as mold. All wild speculation though. And the best test is time. I'm going to be spending a while longer here so we shall see.

I took it up to SD & WY last january for 3 weeks. (Cheap gas had to take advantage of it) Thinking being the air would be much cleaner when the ground is covered with snow. My luck that January was probably one of the warmest on record. When I got back to T or C., NM I crashed really hard. Which makes me think it did help & living in the desert isn't all it's cracked up to be.

Food. I seem to be able to get away with eating a hand full of peanuts which I do occasionally cause I not only like them but want to get some diversity in my diet. Too much I seem to get something I call fybromyalgia of the head. I couldn't even begin to describe it. At least not in one paragraph. Gluten I suspect is really bad for me but don't want to experiment to find out. Water I was drinking in NM was really hard, lot's of minerals which I think I became extremely sensitized to.

I've finally come back to the idea some type of infection though cause I just keep seeming to be getting worse. Also suspect some type of poisoning. Or some combination of the two. Antibiotics definitely seem to help. When I fist tried them my digestive tract literately shut down. Took about a day for me to start reacting (sick bed ridden) and another 8 hrs for my stomach contents to come back out the way they came in. I quit for three days tried again and was not only able to tolerate them but seemed to get much better. No more PEM, more energy, less symptoms like poor cognition & coordination, flu like feeling, etc.

Still taking 1 to two 500mg amoxicillian daily. Be interesting to see what happens when I run out. I want to get screened for heavy metals but dubious of a lot of the labs that perform these services. Finally did go baycare in fl and will be getting the results for a lyme test and a urine test. They botched the hevey metal screen though so I have to go in again. They only do mercury lead & arsenic. Any suggestions on what else I would want to test for as far as metals go?

I apologize to everyone for rambling on so much.