Re: Valtrex Questions and CFD Questions please help

May 1, 2012

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~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

Also, you would not want to do a trial of Valtrex unless it was at least three months to a year only after confirmation from labs that were suggestive of this problem. Untrue. Labs are incredibly unreliable. Google "stealth virus HHV-6" for more info. You do want to pull labs, but only because you need a baseline. Everyone really should do a trial of antivirals/antifungals no matter what as titers that are negative in the beginning will many times shoot up after one or two months of antivirals, exposing the virus from stealth mode. But yes, trials should be 6 months to a year because you may need to try different antivirals. Any DAN worth their salt with antiviral therapy will do a trial no matter what the labs say, and so will Dr. Goldberg (NIDS). Check the links in my signature for more info.I read that viruses can mutate and replicate when the anti-viral is stopped and restarted after a lapse. Not quite. They can mutate from improper use. Not being consistent can cause mutation. Not taking them at the proper times, skipping doses, etc. is inconsistent. Stopping and then starting again several months later isn't as likely to be a problem so long as it's not every other month. It's the same conundrum that antibiotics have - overprescription and misuse causes mutation. Antivirals and antifungals are no different.When on Valtrex, a doctor must do labs once a month to check kidney function etc. No, it's more like every 2 months but some will check the next month after the first month just to be safe. After a while, it's not as necessary to check so often. My son has been on them for 5 years. We quit constantly checking liver function after about 2 years. Now we check a couple times a year.As for a spinal tap, from what I have learned, this could cause further problems realated to micro-glial activation and neurotoxicity. I hope this helps. In our personal journey, we made a lot of poor judgement calls by acting out of haste and not really knowing what to do. I would definitely agree that a spinal tap isn't something you go into lightly. You'll have a very hard time finding a doc willing to just do this without a very clear indication that it needs to be done. It's not something any doctor will simply do because of a hunch. Other tests will have to be performed first and you'll have to convince a doctor that the other tests *should* be done. A DAN will not do a spinal, nor will any other doctor just because. It's incredibly invasive.

May 1, 2012

What biomed have you done already? In order to better help, it's probably a good idea to let everyone know what you've already done. Be specific.FYI - folinic acid is sold over the counter. You don't need an Rx to start it and you certainly don't need a diagnosis. Here are a few good ones: Thorne 5MTHF, Kirkman's Folinic Acid, Source Naturals Megafolinic and Metagenics Folapro. Folinic Acid is easy to find. If you see a DAN, they'll give you a Leucovorin Rx if that's what you need. A spinal tap is incredibly unnecessary and invasive. I think what you really need at the moment is to see a doctor that will work with you. That generally means working outside of the NHS and paying out of pocket. Low folic acid is not hard to test. Most of our kids are low in it anyway.While folinic acid can help with autism symptoms, it's rarely effective alone. Biomed and autism is almost never a single biological issue.

~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

i can't start high dose folinic acid which can reverse autistic symptoms and stop sufferers from regressing further.

May 1, 2012

Cheryl,

Point taken! I do agree about the stealth virus, my son would get a red upper lip which was most likely HSV-1, although he never tested pos. for HSV-1. After starting Valtrex, he did get the red lip twice but it only lasted one or two days and disappeared. This was the virus rearing its ugly head. I do get the feeling that the anti-viral is working because he does not get these flare ups as often or for as long as he did in the past. He has only been on it for three mo. so we had the kidney labs recently, about a month ago. So I may not be up to speed on how often he runs kidney labs. All that I was trying to get across was that she should really find a doc who is experienced in the field of bio-med and who is experienced in treating viruses and immune disorders before jumping into the meds without a proper doc to monitor her child. I also understand

her desparation.

Kerri~

To: mb12valtrex Sent: Tuesday, May 1, 2012 11:39 AMSubject: Re: Valtrex Questions and CFD Questions please help

Comments within:

~ Antiviral Therapy 101~

~ Make a biomed book ~

~ gryffinstail.wordpress.com ~

~ @Gryffins_Tail ~

Also, you would not want to do a trial of Valtrex unless it was at least three months to a year only after confirmation from labs that were suggestive of this problem.

Untrue. Labs are incredibly unreliable. Google "stealth virus HHV-6" for more info. You do want to pull labs, but only because you need a baseline. Everyone really should do a trial of antivirals/antifungals no matter what as titers that are negative in the beginning will many times shoot up after one or two months of antivirals, exposing the virus from stealth mode. But yes, trials should be 6 months to a year because you may need to try different antivirals. Any DAN worth their salt with antiviral therapy will do a trial no matter what the labs say, and so will Dr. Goldberg (NIDS). Check the links in my signature for more info.

I read that viruses can mutate and replicate when the anti-viral is stopped and restarted after a lapse.

Not quite. They can mutate from improper use. Not being consistent can cause mutation. Not taking them at the proper times, skipping doses, etc. is inconsistent. Stopping and then starting again several months later isn't as likely to be a problem so long as it's not every other month. It's the same conundrum that antibiotics have - overprescription and misuse causes mutation. Antivirals and antifungals are no different.

When on Valtrex, a doctor must do labs once a month to check kidney function etc.

No, it's more like every 2 months but some will check the next month after the first month just to be safe. After a while, it's not as necessary to check so often. My son has been on them for 5 years. We quit constantly checking liver function after about 2 years. Now we check a couple times a year.

As for a spinal tap, from what I have learned, this could cause further problems realated to micro-glial activation and neurotoxicity. I hope this helps. In our personal journey, we made a lot of poor judgement calls by acting out of haste and not really knowing what to do.

I would definitely agree that a spinal tap isn't something you go into lightly. You'll have a very hard time finding a doc willing to just do this without a very clear indication that it needs to be done. It's not something any doctor will simply do because of a hunch. Other tests will have to be performed first and you'll have to convince a doctor that the other tests *should* be done. A DAN will not do a spinal, nor will any other doctor just because. It's incredibly invasive.

May 2, 2012

Comments within:

~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

so we had the kidney labs recently, about a month ago. So I may not be up to speed on how often he runs kidney labs. Valtrex clears through the kidneys. BUT it's not necessary to test kidney function unless there's an actual indication that you need to test kidney function. Kidney function testing is not common practice. I think you might be confusing kidney and liver function. Liver function needs to be tested because the antifungal you get with the antiviral clears through the liver and does actually need to be tested because it can cause liver issues - about every 6 weeks until you see that it's not a problem. It's not that common that it will raise liver enzymes but it's not uncommon enough that it shouldn't be tested. There are several parents here that have reported raised liver enzymes.All that I was trying to get across was that she should really find a doc who is experienced in the field of bio-med and who is experienced in treating viruses and immune disorders before jumping into the meds without a proper doc to monitor her child. I also understand

her desparation. Yes, a doctor with experience is what everyone needs. I think we all understand her desperation. We've all been there. The biggest problem I see in biomed is that it's impossible to know who is experienced with what. Each doc has their favorites and things they marginalize - which means that the thing your child needs the most may not be what the doctor you see cares enough about to know how to do it right. It's quite frustrating, really.That's why we all need to research our bums off. We need to know what's out there, how to do it and why. The unfortunate truth is that we need to be as effective as doctors when it comes to knowing how to treat our kids. It takes a lot of time and a lot of research but it's doable. I'm not an MD and my local friends come to me with questions before going to their doctors because I can explain things better and tell them what they need to know - the things doctors don't bother with. I can tell them what to ask their doctors about because they overlook things they don't care or know about. It sucks but all of us need to have that level of understanding when it comes to biomed.Not everyone is so inclined though. Which is what makes these groups good and bad, all at once. Fantastic information is doled out but sometimes we know just enough to get us into trouble. Tis the beautiful danger of a double-edged sword.Speak up, speak out and speak often. Don't be afraid of it. I'm not as active on the list as I used to be and I go through spurts of being around and not. Don't be offended if I come in and make grand statements and sweeping gestures and then disappear (I'm flashy like that). I really just want to make sure information is accurate when I manage to see it, NOT make you feel like you shouldn't speak or aren't appreciated. You should and you are.

May 2, 2012

Recommendations for bio med doctor in west L.A., CA??Sent from my iPhoneComments within:

<PastedGraphic-3.tiff>~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

so we had the kidney labs recently, about a month ago. So I may not be up to speed on how often he runs kidney labs. Valtrex clears through the kidneys. BUT it's not necessary to test kidney function unless there's an actual indication that you need to test kidney function. Kidney function testing is not common practice. I think you might be confusing kidney and liver function. Liver function needs to be tested because the antifungal you get with the antiviral clears through the liver and does actually need to be tested because it can cause liver issues - about every 6 weeks until you see that it's not a problem. It's not that common that it will raise liver enzymes but it's not uncommon enough that it shouldn't be tested. There are several parents here that have reported raised liver enzymes.All that I was trying to get across was that she should really find a doc who is experienced in the field of bio-med and who is experienced in treating viruses and immune disorders before jumping into the meds without a proper doc to monitor her child. I also understand

her desparation. Yes, a doctor with experience is what everyone needs. I think we all understand her desperation. We've all been there. The biggest problem I see in biomed is that it's impossible to know who is experienced with what. Each doc has their favorites and things they marginalize - which means that the thing your child needs the most may not be what the doctor you see cares enough about to know how to do it right. It's quite frustrating, really.That's why we all need to research our bums off. We need to know what's out there, how to do it and why. The unfortunate truth is that we need to be as effective as doctors when it comes to knowing how to treat our kids. It takes a lot of time and a lot of research but it's doable. I'm not an MD and my local friends come to me with questions before going to their doctors because I can explain things better and tell them what they need to know - the things doctors don't bother with. I can tell them what to ask their doctors about because they overlook things they don't care or know about. It sucks but all of us need to have that level of understanding when it comes to biomed.Not everyone is so inclined though. Which is what makes these groups good and bad, all at once. Fantastic information is doled out but sometimes we know just enough to get us into trouble. Tis the beautiful danger of a double-edged sword.Speak up, speak out and speak often. Don't be afraid of it. I'm not as active on the list as I used to be and I go through spurts of being around and not. Don't be offended if I come in and make grand statements and sweeping gestures and then disappear (I'm flashy like that). I really just want to make sure information is accurate when I manage to see it, NOT make you feel like you shouldn't speak or aren't appreciated. You should and you are.

May 2, 2012

http://www.autismtoday.com/clinician-list.html

~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

Recommendations for bio med doctor in west L.A., CA??Sent from my iPhoneComments within:

<PastedGraphic-3.tiff>~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

so we had the kidney labs recently, about a month ago. So I may not be up to speed on how often he runs kidney labs. Valtrex clears through the kidneys. BUT it's not necessary to test kidney function unless there's an actual indication that you need to test kidney function. Kidney function testing is not common practice. I think you might be confusing kidney and liver function. Liver function needs to be tested because the antifungal you get with the antiviral clears through the liver and does actually need to be tested because it can cause liver issues - about every 6 weeks until you see that it's not a problem. It's not that common that it will raise liver enzymes but it's not uncommon enough that it shouldn't be tested. There are several parents here that have reported raised liver enzymes.All that I was trying to get across was that she should really find a doc who is experienced in the field of bio-med and who is experienced in treating viruses and immune disorders before jumping into the meds without a proper doc to monitor her child. I also understand

her desparation. Yes, a doctor with experience is what everyone needs. I think we all understand her desperation. We've all been there. The biggest problem I see in biomed is that it's impossible to know who is experienced with what. Each doc has their favorites and things they marginalize - which means that the thing your child needs the most may not be what the doctor you see cares enough about to know how to do it right. It's quite frustrating, really.That's why we all need to research our bums off. We need to know what's out there, how to do it and why. The unfortunate truth is that we need to be as effective as doctors when it comes to knowing how to treat our kids. It takes a lot of time and a lot of research but it's doable. I'm not an MD and my local friends come to me with questions before going to their doctors because I can explain things better and tell them what they need to know - the things doctors don't bother with. I can tell them what to ask their doctors about because they overlook things they don't care or know about. It sucks but all of us need to have that level of understanding when it comes to biomed.Not everyone is so inclined though. Which is what makes these groups good and bad, all at once. Fantastic information is doled out but sometimes we know just enough to get us into trouble. Tis the beautiful danger of a double-edged sword.Speak up, speak out and speak often. Don't be afraid of it. I'm not as active on the list as I used to be and I go through spurts of being around and not. Don't be offended if I come in and make grand statements and sweeping gestures and then disappear (I'm flashy like that). I really just want to make sure information is accurate when I manage to see it, NOT make you feel like you shouldn't speak or aren't appreciated. You should and you are.

May 2, 2012

Thank you Craig, , Kerri and Cheryl, I love this group and like i'v said i have been a member for the last few years. Cheryl i am honoured that you have replied to one of my posts. I have read probably most of your posts for the last few years. You taught me about half life, not only have i read your posts over and over but so has my husband and my mum. I know all about trying antivirals even if the labs don't show up a high viral titer, my sons did but i would have tried it anyway. Craig I know that regular liver function tests are needed when our kids are on anti fungals because they clear through the liver. I started valtrex for my son about 5 weeks ago under the guidance of Dr Goyal who is the nearest we have to Dr Goldberg in this country. You can google him, he is good. I was a bit worried that he told me to start Mat on 500mg twice a day because of the half life and i explained that i wanted to do it the nids way ie 3x a day but he said to hit it hard and then after 2 weeks to go to 3 x 250 a day. I took his advice but i gave it 4 weeks of 500 twice a day and the last week i have just switched to 250 8am, 250 3.30pm and 500 at 9pm. He told me to start the diflucan or fluconazole as its called a week after starting the valtrex and give 50mg once a day which i have done. I will be getting FBC, U & Es and LFTs done 4-6 weekly starting next week. I love the support from this group and you all keep me going, i appreciate everyone's input. It is so nice to be a part of this as in England UK the medical profession think that Autism is what causes all the problems that our kids have instead of the other way around. I just wish i lived in America, you's are so far ahead of us here. Cheryl i will update everyone tomorrow on what i have tried so far with Mat. Thanks again everyone. Jess x To: mb12valtrex From: cslepic@...Date: Wed, 2 May 2012 11:52:06 -0700Subject: Re: Valtrex Questions and CFD Questions please help

Recommendations for bio med doctor in west L.A., CA??Sent from my iPhoneComments within:

<PastedGraphic-3.tiff>~ Antiviral Therapy 101~~ Make a biomed book ~~ gryffinstail.wordpress.com ~~ @Gryffins_Tail ~

so we had the kidney labs recently, about a month ago. So I may not be up to speed on how often he runs kidney labs. Valtrex clears through the kidneys. BUT it's not necessary to test kidney function unless there's an actual indication that you need to test kidney function. Kidney function testing is not common practice. I think you might be confusing kidney and liver function. Liver function needs to be tested because the antifungal you get with the antiviral clears through the liver and does actually need to be tested because it can cause liver issues - about every 6 weeks until you see that it's not a problem. It's not that common that it will raise liver enzymes but it's not uncommon enough that it shouldn't be tested. There are several parents here that have reported raised liver enzymes.All that I was trying to get across was that she should really find a doc who is experienced in the field of bio-med and who is experienced in treating viruses and immune disorders before jumping into the meds without a proper doc to monitor her child. I also understand

her desparation. Yes, a doctor with experience is what everyone needs. I think we all understand her desperation. We've all been there. The biggest problem I see in biomed is that it's impossible to know who is experienced with what. Each doc has their favorites and things they marginalize - which means that the thing your child needs the most may not be what the doctor you see cares enough about to know how to do it right. It's quite frustrating, really.That's why we all need to research our bums off. We need to know what's out there, how to do it and why. The unfortunate truth is that we need to be as effective as doctors when it comes to knowing how to treat our kids. It takes a lot of time and a lot of research but it's doable. I'm not an MD and my local friends come to me with questions before going to their doctors because I can explain things better and tell them what they need to know - the things doctors don't bother with. I can tell them what to ask their doctors about because they overlook things they don't care or know about. It sucks but all of us need to have that level of understanding when it comes to biomed.Not everyone is so inclined though. Which is what makes these groups good and bad, all at once. Fantastic information is doled out but sometimes we know just enough to get us into trouble. Tis the beautiful danger of a double-edged sword.Speak up, speak out and speak often. Don't be afraid of it. I'm not as active on the list as I used to be and I go through spurts of being around and not. Don't be offended if I come in and make grand statements and sweeping gestures and then disappear (I'm flashy like that). I really just want to make sure information is accurate when I manage to see it, NOT make you feel like you shouldn't speak or aren't appreciated. You should and you are.

May 2, 2012

Thank you!! Craig

From: mb12valtrex

[mailto:mb12valtrex ] On

Behalf Of jessica s

Sent: Wednesday, May 02, 2012 4:11

PM

To: mb12valtrex

Subject: RE: Valtrex

Questions and CFD Questions please help

Thank you Craig, , Kerri and Cheryl,

I love this group and like i'v said i have been a member for the last few

years. Cheryl i am honoured that you have replied to one of my posts. I have

read probably most of your posts for the last few years. You taught me about

half life, not only have i read your posts over and over but so has my husband

and my mum.

I know all about trying antivirals even if the labs don't show up a high

viral titer, my sons did but i would have tried it anyway. Craig I

know that regular liver function tests are needed when our kids

are on anti fungals because they clear through the liver. I started

valtrex for my son about 5 weeks ago under the guidance of Dr Goyal who is the

nearest we have to Dr Goldberg in this country. You can google him, he is good.

I was a bit worried that he told me to start Mat on 500mg twice a day because

of the half life and i explained that i wanted to do it the nids way ie 3x a

day but he said to hit it hard and then after 2 weeks to go to 3 x 250 a day. I

took his advice but i gave it 4 weeks of 500 twice a day and the last week

i have just switched to 250 8am, 250 3.30pm and 500 at 9pm. He told me to

start the diflucan or fluconazole as its called a week after starting the

valtrex and give 50mg once a day which i have done.

I will be getting FBC, U & Es and LFTs done 4-6 weekly starting next week.

I love the support from this group and you all keep me going, i

appreciate everyone's input. It is so nice to be a part of this as in

England UK the medical profession think that Autism is what causes all the

problems that our kids have instead of the other way around. I just wish i

lived in America,

you's are so far ahead of us here.

Cheryl i will update everyone tomorrow on what i have tried so far with Mat.

Thanks again everyone.

Jess x

To: mb12valtrex

From: cslepic@...

Date: Wed, 2 May 2012 11:52:06 -0700

Subject: Re: Valtrex Questions and CFD Questions please help

Recommendations for bio med doctor in west L.A., CA??

Sent from my iPhone

On May 2, 2012, at 8:54 AM, Cheryl

wrote:

Comments within:

<PastedGraphic-3.tiff>

~ Antiviral

Therapy 101~

~ Make

a biomed book ~

~ gryffinstail.wordpress.com ~

~ @Gryffins_Tail ~

so we had the kidney labs recently, about a month

ago. So I may not be up to speed on how often he runs kidney labs.

Valtrex clears through the kidneys. BUT it's not necessary to test

kidney function unless there's an actual indication that you need to test

kidney function. Kidney function testing is not common practice. I think you

might be confusing kidney and liver function. Liver function needs to be tested

because the antifungal you get with the antiviral clears through the liver and

does actually need to be tested because it can cause liver issues - about every

6 weeks until you see that it's not a problem. It's not that common that it

will raise liver enzymes but it's not uncommon enough that it shouldn't be

tested. There are several parents here that have reported raised liver enzymes.

All that I was trying to get across was that she should really

find a doc who is experienced in the field of bio-med and who is experienced in

treating viruses and immune disorders before jumping into the meds without a

proper doc to monitor her child. I also understand her desparation.

Yes, a doctor with experience is what everyone needs. I think

we all understand her desperation. We've all been there. The biggest problem I

see in biomed is that it's impossible to know who is experienced with what.

Each doc has their favorites and things they marginalize - which means that the

thing your child needs the most may not be what the doctor you see cares enough

about to know how to do it right. It's quite frustrating, really.

That's why we all need to research our bums off. We need to know what's

out there, how to do it and why. The unfortunate truth is that we need to be as

effective as doctors when it comes to knowing how to treat our kids. It takes a

lot of time and a lot of research but it's doable. I'm not an MD and my local

friends come to me with questions before going to their doctors because I can

explain things better and tell them what they need to know - the things doctors

don't bother with. I can tell them what to ask their doctors about because they

overlook things they don't care or know about. It sucks but all of us need to

have that level of understanding when it comes to biomed.

Not everyone is so inclined though. Which is what makes these groups

good and bad, all at once. Fantastic information is doled out but sometimes we

know just enough to get us into trouble. Tis the beautiful danger of a

double-edged sword.

Speak up, speak out and speak often. Don't be afraid of it. I'm not as

active on the list as I used to be and I go through spurts of being around and

not. Don't be offended if I come in and make grand statements and

sweeping gestures and then disappear (I'm flashy like that). I really just

want to make sure information is accurate when I manage to see it, NOT make you

feel like you shouldn't speak or aren't appreciated. You should and you are.

May 2, 2012

Where is Dr. Goyal located?

From:

mb12valtrex [mailto:mb12valtrex ] On Behalf Of jessica s