HSV/VCV/CMV/HHV-6 - how to combine meds

D

danielB

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7
Dear guys and gals,

my friend got her HHVs tested a month ago and she was IgM positive for HSV, VCV, CMV and HHV-6. Her symptoms are mainly chronic pain, but other than that she is "healthy" (the rest of her bloodwork is OK) so these infections are probably in the low-grade/chronic territory.

Her MD put her on Valtrex 2-0-2 and Isoprinosine. The effects after three weeks were barely noticeable. Today, he prescribed Valcyte 450mg 2-0-2 and we are expecting artesunate from Hepaling to arrive next week.

My friend is not exactly on the financially rich side and Valcyte is coming out of her pocket at around $3200 per month. I would thus like to ask your recommendations about the following:

  1. is there a best way to combine Valcyte and Artesunate? Can these be taken together w/o problems?
  2. is there some interplay between vitamin D (or other vitamins for that matter) and Valcyte? Does it pay to have vitamin D raised before starting Valcyte/Artesunate?
  3. Valcyte seems much cheaper on e.g. buy-pharma than it is here - is it safe to buy Valcyte there and use it in case more than a month is needed?
Thank you,
Daniel
 
heapsreal

heapsreal

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danielB said:
Dear guys and gals,

my friend got her HHVs tested a month ago and she was IgM positive for HSV, VCV, CMV and HHV-6. Her symptoms are mainly chronic pain, but other than that she is "healthy" (the rest of her bloodwork is OK) so these infections are probably in the low-grade/chronic territory.

Her MD put her on Valtrex 2-0-2 and Isoprinosine. The effects after three weeks were barely noticeable. Today, he prescribed Valcyte 450mg 2-0-2 and we are expecting artesunate from Hepaling to arrive next week.

My friend is not exactly on the financially rich side and Valcyte is coming out of her pocket at around $3200 per month. I would thus like to ask your recommendations about the following:

  1. is there a best way to combine Valcyte and Artesunate? Can these be taken together w/o problems?
  2. is there some interplay between vitamin D (or other vitamins for that matter) and Valcyte? Does it pay to have vitamin D raised before starting Valcyte/Artesunate?
  3. Valcyte seems much cheaper on e.g. buy-pharma than it is here - is it safe to buy Valcyte there and use it in case more than a month is needed?
Thank you,
Daniel
Click to expand...

Another option to talk over with ones dr, which may help as with some pts on this forum have found helpful treating cmv and hhv6 which valcyte is used for, is to change to famvir and drop valtrex and valcyte. Some cfs drs also prefer famvir before stepping up to use valcyte. In the mean time save up ones pennies incase valcyte is needed down the track.
 
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danielB

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7
godlovesatrier said:
@danielB how did you get on with valcyte and artensuate? Did they give you the boost to see some beneficial changes?
Click to expand...

Thank you for asking. My friend got on Valcyte 2-0-2 and was taking it for about a month. Getting artesunate proved to be a challenge in our country, so I had to import it in capsules from the US. By the time it was here, my friend was already feeling worse from Valcyte so there was little emotional capital to add artesunate.

After four weeks on Valcyte, there was only a small improvement in my friend's symptoms, while the side effects were noticeable (mostly GI pains/cramps). Tests (PCR and antibody) came back negative, so we terminated the treatment, also because Valcyte is expensive out of the pocket.

So overall, there were some minor improvements in symptoms, but it seems that HHVs are not the main cause behind them.
 
godlovesatrier

godlovesatrier

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Yes it's so complicated. Thank you for the reply.

In my case I started famvir and now I've got an infection in one or both of my tonsils. It's mild at present but I'm confident it will only get worse if my body can't get rid of it on its own.

Did you continue with any of your improvements since you originally posted this thread? Or did you loose those improvements?

Thanks again for the update.
 
D

danielB

Messages
7
Sorry to hear about your infection. I hope it gets sorted out quickly.

Yes, my friend reports that some of the gains, albeit small, have stuck. I wish I knew more about whether Valcyte really helped, or whether its coincidence, whether HHVs were there before hey symptoms started .. but we have no idea.

On Tuesday, she is going to get a spinal tap, hopefully something is going to show in the lab results. If there is enough material drawn, I would like to get some of it it under an electron microscope.
 
godlovesatrier

godlovesatrier

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Electron microscopy is interesting for sure.

Yes hard to know what Anyone of us before all this started. To be fair most of the viruses were there. So possibly only titers went up after infection as opposed to anything else. Others would disagree.
 
heapsreal

heapsreal

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It wasn't uncommon for people to be on valcyte for 6 months and feel ordinary at best. The improvements came once they stopped valcyte and their immune system was strong enough to keep the viruses down or with the help of valtrex or famvir to help maintain things??
It really is a trial and error thing for treating cfsme. But valcyte can be brutal to tolerate. Cost is ridiculous, I thought after all this time it would be alot cheaper but....
Time for a few new herpes antivirals to be invented😌
 
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