Valtrex - should we carry on?

March 8, 2012

Hi all,

I would be grateful if you could offer advice or explanation.

My son is 11 and we did range of tests with Dr G in Dec. The results showed very

raised Cytomegalovirus antibodies, lymphocytoses etc, so i was adviced to start

treatment with Valtrex (3x500mg), Fluconazole (1x50 mg), as well as B 12, Folic

acid in addition to Vits, oils and probiotics already in place.

To start with my son developed very puffy red eyes and dark shadows, which

mainly cleared after 2 weeks, except for slight shadows under his eyes

remaining. He also gets very tired in the evenings and wakes up with his eyes

tired looking and no usual brightness.

After about 8 weeks we did repeated autonomic response testing which Dr G

interpreted as markedly improved and adviced we carry on with antivirals

introducing oxygen concentrator treatment and vascular endothelial support. He

thought that my son's behaviour seemed improved compared to last time (my son

usually behaves better when all more familiar..) I did say that i could not see

gains in his functioning or behaviour. If anything his obsessiveness and

controlling language, as well as being more OCD increased (but negative strep

titre test). At the same time i did want to believe him that my son will get

better with prolonged treatment, so decided to carry on.

Introducing oxygen concentrator for 3 hours every day after school was not

possible and was causing too much grief, but we are doing vascular support.

Still, after over 3 months no gains. My son's OCD behaviours and obsessiveness

are not getting any worse or better.

Wondering if with prolonging the treatment things could still get better for us,

or is it just a wishful thinking. Also, why do you think the improvements shown

on repeated autonomic test are not translating into real gains in functioning?

If antivirals are not helping, what to do next?

Many thanks,

Vesna

March 9, 2012

Hi Natasa,

Many thanks on your ideas and support.

My son takes 2X Perque B-12 2000 mcg sublingual lozenges. Folic Acid (from

Calcium Folinate) is in liquid form from Metabolics,2X 3 drops (each drop 86.5

mcg.) I have not noticed any positive or other changes since started B-12 at the

beg. of Jan.

I have a phone consultatin with Dr G last week of March and hope that will bring

some clarity and make us both less anxious:)

Will take Fluconazole out for a week and see if that brings some positive

changes.

Have you tried oxygen therapy and to what effect?

Vesna

>

> Is b12 given as shots or another form? Imo b12 should bring obvious gains

> quickly, so if it hasn't worked in 3 months it probably won't. Same with

> folic How much is he on? Especially if it is plain folic type it can

> accumulate in body with prolonged use, better not do it or give it on and

> off.

>

> Re valtrex, it can sometimes take longer to kick it, I've heard of 6-9 month

> window as a minimum to try, not sure if true. Maybe worth posting enquiring

> on nids list http://health.groups.yahoo.com/group/NIDS/

>

> Re fluconazole, for us it was antifungal (nystatin) that had negative

> effects, not valtrex itself. Maybe try removing it for a while see what

> happens? Also worth discussing with doc to have it rotated with another

> antifungal, or even no antifungal at all --- it is always said that

> antivirals kick up yeast and should be given with antifungals on board but

> for us it wasn't the case and antifungals were not needed.

>

> Btw we were given fluconazole and flagyl last year to address bacteria and

> candida, and all they did was cause massive constipation and painful bowel

> movements. Well at least one of those two did! Could it be that fluconazole

> is doing something to the gut that makes your son more obsessive and

> controlling?

>

> Hth

> Natasa

>

> Reply-To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Date: Thu, 08 Mar 2012 12:28:25 -0000

> To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Subject: Valtrex - should we carry on?

>

> Hi all,

> I would be grateful if you could offer advice or explanation.

>

> My son is 11 and we did range of tests with Dr G in Dec. The results showed

> very raised Cytomegalovirus antibodies, lymphocytoses etc, so i was adviced

> to start treatment with Valtrex (3x500mg), Fluconazole (1x50 mg), as well as

> B 12, Folic acid in addition to Vits, oils and probiotics already in place.

>

> To start with my son developed very puffy red eyes and dark shadows, which

> mainly cleared after 2 weeks, except for slight shadows under his eyes

> remaining. He also gets very tired in the evenings and wakes up with his

> eyes tired looking and no usual brightness.

>

> After about 8 weeks we did repeated autonomic response testing which Dr G

> interpreted as markedly improved and adviced we carry on with antivirals

> introducing oxygen concentrator treatment and vascular endothelial support.

> He thought that my son's behaviour seemed improved compared to last time (my

> son usually behaves better when all more familiar..) I did say that i could

> not see gains in his functioning or behaviour. If anything his obsessiveness

> and controlling language, as well as being more OCD increased (but negative

> strep titre test). At the same time i did want to believe him that my son

> will get better with prolonged treatment, so decided to carry on.

>

> Introducing oxygen concentrator for 3 hours every day after school was not

> possible and was causing too much grief, but we are doing vascular support.

>

> Still, after over 3 months no gains. My son's OCD behaviours and

> obsessiveness are not getting any worse or better.

>

> Wondering if with prolonging the treatment things could still get better for

> us, or is it just a wishful thinking. Also, why do you think the

> improvements shown on repeated autonomic test are not translating into real

> gains in functioning?

> If antivirals are not helping, what to do next?

> Many thanks,

> Vesna

>

March 9, 2012