Re: Can LDN inhibit anti-virals?

[Guest guest]

I don't know the answer about LDN, but there's a couple of other possibilities

going on too...

One, starting and stopping antivirals, as well as using a lower than

treatment-level dose (some Dans! do low-dose or 'suppressive' doses) can rapidly

cause resistance, and that antiviral can become less effective.

When that happens, or when it's not the right dose or type of antiviral, the

antiviral can literally 'stir up' a virus, and if it's unable to keep it

suppressed, actually increase viral activity, because it sort of 'flushed' a

virus out but didn't keep it down.  Years ago I used to see Dr G throw quite

the

temper tantrum over how serious under-dosing & starting and stopping is. 

Once when I was having a bad CFIDS attack, and my brain completely went, I

couldn't even get my kids' antivirals filled literally for two weeks. Couldn't

schedule an appointment, couldn't get labs done - couldn't make a phone

calll... I was a real mess.  When I was telling him what happened, before we

got

to the part where I was so sick that I couldn't function, he totally flipped out

on me for running out - said that these viruses (like HHV6 which one kid was a

clear HHV6 kid) can rapidly build resistance the moment you let up on them, and

there are so few antivirals we can use in our kids.  He eventually realized I

knew all this & that something was wrong for me to have done that, and he helped

me get on the road to recovery.  It was a painful little chat but I never ran

out of meds (at least on the kids) again until we just couldn't sustain the

protocol anymore when I couldn't get well & couldn't work anymore. 

But I can't remember why he's against LDN, but I do know it's been tried in the

CFS community for a long time, and it has been rejected by many of those docs. 

I don't think I see Dr Klimas recommending it (I could be wrong but I really

don't remember or I'd have already asked for it based on what I've read), so she

must see a negative immune effect.  Sometimes while it may have a positive

effect on one type of immune cell, it can also have a negative effect on

another.  Anyway, the research didn't pan out on it.   (Of course, I fell off

my

chair the first time I heard he had prescribed adderal - I didn't believe it

until the next person said so too.)

LDN has some effects on some receptors (opiod maybe?) that can make your kids

brighter - but sometimes that's not always a good thing.  Just because someone

brightens up and has a lot more energy on opiates or their antagonists doesn't

mean they're actually very good for them, and there are some downhill effects on

the immune system - some kind of suppression that I remember reading about that

surprised me.  I've been particularly interested in LDN because if I take a

narcotic cough syrup, I feel almost normal.  I'm much brighter and have much

more energy.  I feel more human than any other time.  It's actually scarey.

 But

down the road, other problems crop up.  So while I have little doubt that it

(LDN) would make me feel better - maybe significantly - I haven't gone there.

So anyway, I don't know why your kids are looking brighter off antivirals than

on, but it is concerning.  I would first question the dose, then watch for the

possibility of an extended die-off because it isn't hitting the virus(es) as

effectively, and then the possibility that it isn't the right one.  If a kid

went into more of a fog on them and did not pull out of it in a month, I believe

Dr G would switch it, although that may depend on labs and exactly what kind of

cognitive stuff you're seeing. 

There's another possibility too.  It could be that as a virus gets suppressed,

blood flow may increase to the brain a bit, and in an already inflamed brain,

this doesn't always look nice at first.  That's why sometimes starting SSRIs

are

so rough.  But if your dose was good and the antiviral was right and the labs

are looking ok but your kid went foggy, I believe Dr G would almost certainly

add an SSRI at that point.  You do sometimes see what looks like a step back

that actually isn't.

So is it Valtrex that you're back on?  Also, is it coated with blue dye, and

are

you washing that off?  If you're back on Valtrex after a lot of stops and

starts, perhaps your dr would consider a different one (at treatment, not

suppressive dose)?  My kids did much better on Famvir. 

Those are just a couple of my thoughts on possibilities of what you could be

seeing.  I'm sure there's a lot more possibilities than those, of course.

HTH,

________________________________

From: rhondamasengale <rhondamasengale@...>

Sent: Mon, January 17, 2011 9:28:50 AM

Subject: Can LDN inhibit anti-virals?

 

Hi listmates. My boys have been on LDN for 2 years. We previously did the

valtrex protocol and had wonderful gains. However, since starting LDN and

restarting the anti virals (previous Dan took them off and they regressed again)

they don't seem to be responding as good as before. Also, cognitively, they just

seem off when in it. I took them off for about a month in Dec. and they seemed

to be responding much better cognitively, HOWEVER, the eczema came back and they

were getting sick back-to-back for 6 weeks.

Now back on the LDN, the antivirals don't seem to be working as well and they

are off again. Has anyone doing the protocol had an experience like this

with LDN? someone said Dr. Goldberg didn't like to use LDN, does anyone know

why? I plan to see Dr. soon, starting labs this week. Just wanted to

know if anyone else experienced this. Thank you!

[Guest guest]

Sorry to butt in ,but the cough syrup sounds interesting to me

..What kind do you use?Is it over the counter? I would like to try that

on myself. I have had a few things make me feel normal,but they are

prescription.Thanks,Tammy F.

>

> I don't know the answer about LDN, but there's a couple of other

> possibilities

> going on too...

> One, starting and stopping antivirals, as well as using a lower than

> treatment-level dose (some Dans! do low-dose or 'suppressive' doses)

> can rapidly

> cause resistance, and that antiviral can become less effective.

> When that happens, or when it's not the right dose or type of

> antiviral, the

> antiviral can literally 'stir up' a virus, and if it's unable to keep it

> suppressed, actually increase viral activity, because it sort of

> 'flushed' a

> virus out but didn't keep it down. Years ago I used to see Dr G throw

> quite the

> temper tantrum over how serious under-dosing & starting and stopping is.

>

> Once when I was having a bad CFIDS attack, and my brain completely

> went, I

> couldn't even get my kids' antivirals filled literally for two

> weeks. Couldn't

> schedule an appointment, couldn't get labs done - couldn't make a phone

> calll... I was a real mess. When I was telling him what happened,

> before we got

> to the part where I was so sick that I couldn't function, he totally

> flipped out

> on me for running out - said that these viruses (like HHV6 which one

> kid was a

> clear HHV6 kid) can rapidly build resistance the moment you let up on

> them, and

> there are so few antivirals we can use in our kids. He eventually

> realized I

> knew all this & that something was wrong for me to have done that, and

> he helped

> me get on the road to recovery. It was a painful little chat but I

> never ran

> out of meds (at least on the kids) again until we just couldn't

> sustain the

> protocol anymore when I couldn't get well & couldn't work anymore.

>

> But I can't remember why he's against LDN, but I do know it's been

> tried in the

> CFS community for a long time, and it has been rejected by many of

> those docs.

> I don't think I see Dr Klimas recommending it (I could be wrong but I

> really

> don't remember or I'd have already asked for it based on what I've

> read), so she

> must see a negative immune effect. Sometimes while it may have a

> positive

> effect on one type of immune cell, it can also have a negative effect on

> another. Anyway, the research didn't pan out on it. (Of course, I

> fell off my

> chair the first time I heard he had prescribed adderal - I didn't

> believe it

> until the next person said so too.)

>

> LDN has some effects on some receptors (opiod maybe?) that can make

> your kids

> brighter - but sometimes that's not always a good thing. Just because

> someone

> brightens up and has a lot more energy on opiates or their antagonists

> doesn't

> mean they're actually very good for them, and there are some downhill

> effects on

> the immune system - some kind of suppression that I remember reading

> about that

> surprised me. I've been particularly interested in LDN because if I

> take a

> narcotic cough syrup, I feel almost normal. I'm much brighter and

> have much

> more energy. I feel more human than any other time. It's actually

> scarey. But

> down the road, other problems crop up. So while I have little doubt

> that it

> (LDN) would make me feel better - maybe significantly - I haven't gone

> there.

>

> So anyway, I don't know why your kids are looking brighter off

> antivirals than

> on, but it is concerning. I would first question the dose, then watch

> for the

> possibility of an extended die-off because it isn't hitting the

> virus(es) as

> effectively, and then the possibility that it isn't the right one. If

> a kid

> went into more of a fog on them and did not pull out of it in a month,

> I believe

> Dr G would switch it, although that may depend on labs and exactly

> what kind of

> cognitive stuff you're seeing.

>

> There's another possibility too. It could be that as a virus gets

> suppressed,

> blood flow may increase to the brain a bit, and in an already inflamed

> brain,

> this doesn't always look nice at first. That's why sometimes starting

> SSRIs are

> so rough. But if your dose was good and the antiviral was right and

> the labs

> are looking ok but your kid went foggy, I believe Dr G would almost

> certainly

> add an SSRI at that point. You do sometimes see what looks like a

> step back

> that actually isn't.

>

> So is it Valtrex that you're back on? Also, is it coated with blue

> dye, and are

> you washing that off? If you're back on Valtrex after a lot of stops and

> starts, perhaps your dr would consider a different one (at treatment, not

> suppressive dose)? My kids did much better on Famvir.

>

> Those are just a couple of my thoughts on possibilities of what you

> could be

> seeing. I'm sure there's a lot more possibilities than those, of course.

>

> HTH,

>

>

> ________________________________

> From: rhondamasengale <rhondamasengale@...

> <mailto:rhondamasengale%40>>

> <mailto:%40>

> Sent: Mon, January 17, 2011 9:28:50 AM

> Subject: Can LDN inhibit anti-virals?

>

>

> Hi listmates. My boys have been on LDN for 2 years. We previously did the

> valtrex protocol and had wonderful gains. However, since starting LDN and

> restarting the anti virals (previous Dan took them off and they

> regressed again)

> they don't seem to be responding as good as before. Also, cognitively,

> they just

> seem off when in it. I took them off for about a month in Dec. and

> they seemed

> to be responding much better cognitively, HOWEVER, the eczema came

> back and they

> were getting sick back-to-back for 6 weeks.

>

> Now back on the LDN, the antivirals don't seem to be working as well

> and they

> are off again. Has anyone doing the protocol had an experience

> like this

> with LDN? someone said Dr. Goldberg didn't like to use LDN, does

> anyone know

> why? I plan to see Dr. soon, starting labs this week. Just

> wanted to

> know if anyone else experienced this. Thank you!

>

>

[Guest guest]

Thanks for your answer. Just to clarify, My kids do better on

anti-virals than off, it's just the LDN that seems to be interfering with the

healing. I was thinking maybe it was actually keeping the immune system from

healing while in antivirals. We had to stop the antivirals bc our dan at the

time " didn't understand the protocol " . I restarted it this year at a higher dose

bc they did so great on it previously. We used valtex (yes, washed off blue dye

and now Just switched to acyclovir. They just didn't seem to respond as well

as last time. But they weren't on LDN last time so i thought that may be the

problem. My son's psychologist added zoloft last dec but he went nuts on it. We

switched to Prozac and he calmed down then I saw new antiviral gains emerging.

He's potty training!!!! Eye cintact better, and just more here. But It's clear i

can't do this alone. We just took labs yesterday to prepare to see Dr.

soon! I'm excited as I know my kiddos are viral are helped most by anti-virals.

Your posts are always just what I need to hear! Very informative! Thank you

!

Rhonda Masengale

On Jan 17, 2011, at 10:28 PM, <thecolemans4@...> wrote:

> I don't know the answer about LDN, but there's a couple of other possibilities

> going on too...

> One, starting and stopping antivirals, as well as using a lower than

> treatment-level dose (some Dans! do low-dose or 'suppressive' doses) can

rapidly

> cause resistance, and that antiviral can become less effective.

> When that happens, or when it's not the right dose or type of antiviral, the

> antiviral can literally 'stir up' a virus, and if it's unable to keep it

> suppressed, actually increase viral activity, because it sort of 'flushed' a

> virus out but didn't keep it down. Years ago I used to see Dr G throw quite

the

> temper tantrum over how serious under-dosing & starting and stopping is.

>

> Once when I was having a bad CFIDS attack, and my brain completely went, I

> couldn't even get my kids' antivirals filled literally for two weeks. Couldn't

> schedule an appointment, couldn't get labs done - couldn't make a phone

> calll... I was a real mess. When I was telling him what happened, before we

got

> to the part where I was so sick that I couldn't function, he totally flipped

out

> on me for running out - said that these viruses (like HHV6 which one kid was a

> clear HHV6 kid) can rapidly build resistance the moment you let up on them,

and

> there are so few antivirals we can use in our kids. He eventually realized I

> knew all this & that something was wrong for me to have done that, and he

helped

> me get on the road to recovery. It was a painful little chat but I never ran

> out of meds (at least on the kids) again until we just couldn't sustain the

> protocol anymore when I couldn't get well & couldn't work anymore.

>

> But I can't remember why he's against LDN, but I do know it's been tried in

the

> CFS community for a long time, and it has been rejected by many of those docs.

> I don't think I see Dr Klimas recommending it (I could be wrong but I really

> don't remember or I'd have already asked for it based on what I've read), so

she

> must see a negative immune effect. Sometimes while it may have a positive

> effect on one type of immune cell, it can also have a negative effect on

> another. Anyway, the research didn't pan out on it. (Of course, I fell off

my

> chair the first time I heard he had prescribed adderal - I didn't believe it

> until the next person said so too.)

>

> LDN has some effects on some receptors (opiod maybe?) that can make your kids

> brighter - but sometimes that's not always a good thing. Just because someone

> brightens up and has a lot more energy on opiates or their antagonists doesn't

> mean they're actually very good for them, and there are some downhill effects

on

> the immune system - some kind of suppression that I remember reading about

that

> surprised me. I've been particularly interested in LDN because if I take a

> narcotic cough syrup, I feel almost normal. I'm much brighter and have much

> more energy. I feel more human than any other time. It's actually scarey.

But

> down the road, other problems crop up. So while I have little doubt that it

> (LDN) would make me feel better - maybe significantly - I haven't gone there.

>

> So anyway, I don't know why your kids are looking brighter off antivirals than

> on, but it is concerning. I would first question the dose, then watch for the

> possibility of an extended die-off because it isn't hitting the virus(es) as

> effectively, and then the possibility that it isn't the right one. If a kid

> went into more of a fog on them and did not pull out of it in a month, I

believe

> Dr G would switch it, although that may depend on labs and exactly what kind

of

> cognitive stuff you're seeing.

>

> There's another possibility too. It could be that as a virus gets suppressed,

> blood flow may increase to the brain a bit, and in an already inflamed brain,

> this doesn't always look nice at first. That's why sometimes starting SSRIs

are

> so rough. But if your dose was good and the antiviral was right and the labs

> are looking ok but your kid went foggy, I believe Dr G would almost certainly

> add an SSRI at that point. You do sometimes see what looks like a step back

> that actually isn't.

>

> So is it Valtrex that you're back on? Also, is it coated with blue dye, and

are

> you washing that off? If you're back on Valtrex after a lot of stops and

> starts, perhaps your dr would consider a different one (at treatment, not

> suppressive dose)? My kids did much better on Famvir.

>

> Those are just a couple of my thoughts on possibilities of what you could be

> seeing. I'm sure there's a lot more possibilities than those, of course.

>

> HTH,

>

>

> ________________________________

> From: rhondamasengale <rhondamasengale@...>

>

> Sent: Mon, January 17, 2011 9:28:50 AM

> Subject: Can LDN inhibit anti-virals?

>

>

> Hi listmates. My boys have been on LDN for 2 years. We previously did the

> valtrex protocol and had wonderful gains. However, since starting LDN and

> restarting the anti virals (previous Dan took them off and they regressed

again)

> they don't seem to be responding as good as before. Also, cognitively, they

just

> seem off when in it. I took them off for about a month in Dec. and they seemed

> to be responding much better cognitively, HOWEVER, the eczema came back and

they

> were getting sick back-to-back for 6 weeks.

>

> Now back on the LDN, the antivirals don't seem to be working as well and they

> are off again. Has anyone doing the protocol had an experience like this

> with LDN? someone said Dr. Goldberg didn't like to use LDN, does anyone know

> why? I plan to see Dr. soon, starting labs this week. Just wanted to

> know if anyone else experienced this. Thank you!

>

>

[Guest guest]

I believe Dr G is against LDN, because they don't really have any idea what

affects it has on a developing brain... He also is very sceptical about the

claims of immune regulation.

We are still on LDN (though working our way off)... he started some SSRI's and

it seems to be doing for mood and tantrums what LDN was doing... I don't know if

LDN ever did regulate immune system some, as that is still an issue for us

[Guest guest]

It seemed to do something to their immune systems. They used to get sick all the

time before taking and during they never got sick. I have taken them off again.

I was worried it is keeping their immune system from healing.

Rhonda Masengale

On Jan 18, 2011, at 2:07 PM, " Pedersen " <mpedestrian@...>

wrote:

> I believe Dr G is against LDN, because they don't really have any idea what

affects it has on a developing brain... He also is very sceptical about the

claims of immune regulation.

>

> We are still on LDN (though working our way off)... he started some SSRI's and

it seems to be doing for mood and tantrums what LDN was doing... I don't know if

LDN ever did regulate immune system some, as that is still an issue for us

>

>

>

>