Re: New member - advice OLE?

[Guest guest]

1st question, who is your DAN! Dr?  Unfortunately, choosing a DAN! Dr. straight from the list could be a problem because it doesn't take much to get on the DAN! list.  I know of several "fake" DAN!'s on that list.  It's best to get referrals from parents.Famvir is an anti-viral just like Valtrex except it works slightly differently.  I would fill it.  We just recently switched from Valtrex to Famvir.  Vermox is an anti-parasite.  If he has parasites, fill it.  Yes, an anti-fungal like Nizoral or Diflucan would be best while on antivirals although I do hear that some DAN!'s don't like to use Rx anti-fungals (don't know why).If he's pushing chelation and you aren't interested you need to weigh whether or not you want to stay with him if he isn't listening to your concerns.  This is a matter of personal comfort and you *need* to be comfortable with at least trying chelation before doing it.  You want a doctor that will work *with you* not against you.  Many people find chelation to be a great asset in biomed and some just aren't feeling it.  If you're somewhere in the middle on chelation, ask for the labs and have more discussions with your DAN! as to why he thinks it's necessary for your son.  Ask what method he wants to use and do research on that method.  You need to be comfortable with it and I don't think anyone should go into chelation with any doubts because it is a scary prospect.  Use your best judgement on what you want for your son but be open.  You may find that after researching the method he wants to use, you may be more comfortable with it.  A lot of people think chelation is only done through IV's and there are several methods used.  Also ask him how he monitors the chelation process.  You want to have as much information as possible to make your decision when you are on the fence like this.  If you are completely opposed to chelation, then again, you need to weigh that with how much you want to see this particular DAN!.cherylWe only recently discovered the anti-viral / anti-fungal info, and wanted to try to treat our son BEFORE school starts in late Aug. The doctor we chose off of the DAN list doesn't seem to be familiar with this protocol and only gave us cloves & something else for parasites and was pushing chelation. Also would not give us Valtrex, but RXed something called Virmox and also Famvir??? (Haven't filled those yet. Any help, here?) Not what we wanted. In listening to some S.Kurtz interviews & presentations, we decided to at least try OLE on our own -- but cannot figure out how to dose it. Our son is 7 and weighs abt 50 lbs. We bought Paragon brand & they are 300 mg.I'm thinking that we are also supposed to have him on something like Nizoral? Or am I confusing which is anti-v and which is anti-f? Please help! We're under the gun trying to get his (hopeful) healing regression over with before school starts. I'm pretty sure that we'll experience this -- very likely since we've seen something like this before. We had started him on digestive enzymes (AFP Peptizyde) several years ago and it was almost unbearable! But on the other side of the regression we had many gains in the areas of speech and eye contact, etc. has early infantile autism (as diagnosed through Dr. Rimland's 4-pg. checklist) and has progressed to the point that most people think he has Asperger Syndrome. We've worked hard to make sure that he's included in a regular classroom setting with typical peers (still has pull-outs into the resource room for math & also for reading even though his reading is exceptional.) So, we hate for him to be going nuts when school starts (because of this treatment protocol) as we've been walking the tightrope with the school, trying to keep him out of the nearby school with the contained classroom of autistic children.Sorry for the long post. Just thought you all needed a little background along with my question.Anxious, but hopeful,

[Guest guest]

Thanks for your help, and I hope you don't mind, but I have more

questions...

> 1st question, who is your DAN! Dr? Unfortunately, choosing a DAN!

> Dr. straight from the list could be a problem because it doesn't

take

> much to get on the DAN! list. I know of several " fake " DAN!'s on

> that list. It's best to get referrals from parents.

We don't know many parents in the area who are pursuing recovery the

way that we are. I would say most of them pretty much 'manage' the

disorder rather than agressively tackling it. We just don't have the

time to put into a support group as my husband is a pastor and there

are just not any spare evenings available very often. ) So, we

felt the only option was to look at a list, choose as wisely as we

could regarding location, and PRAY. We were pretty disappointed b/c

the dr. (a D.O.) seemed to want to stay within the vein of treatments

that were his own favorites. He even said some things that

contradicted what we have learned from the recoveryvideos site and

presentations.

He's in Broken Arrow, OK. Said that the only way to test for mercury

in our son's body is when you start the chelation process. He uses

the I.V. method. I've heard such horror stories about it and we

are 'all about' safe. And I can tell you this: You had better give

my son a major sedative if you're going to stick a needle in his arm

for any length of time over 2 seconds! So ... why is he telling us

that you cannot test mercury levels with a hair sample? We didn't

even get to ask about the OATS test or the other one -- now I forget

the name of it. He just kept looking down his nose at us, or that

was how it seemed.

So how does the dosage go with the OLE? Can anyone help??? And I'm

still not sure if this is in place of Valtrex or if it's in place of

Nizoral / Diflu... (however that's spelled?) We're really in the

dark, but not sure we want to start over and find a new doctor.

We're running out of time before school starts and I feel almost

certain that we're going to have a regression period to battle.

Don't want his second grade teacher to take the brunt of it! (

>

> Famvir is an anti-viral just like Valtrex except it works slightly

> differently. I would fill it. We just recently switched from

> Valtrex to Famvir.

Doc kept saying that this Famvir was safer than Valtrex. Do we need

to be monitoring his liver or anything while he's taking these drugs

or natural supplements???

Vermox is an anti-parasite. If he has parasites,

> fill it.

I know nothing about any parasites. This was just something that the

doc shoved at us. I think we'll stick to the cloves and the other

natural thing that we bought for any parasites (IF in fact he would

even have any?)

STILL CONFUSED and not wanting to do anything even the slightest bit

dangerous without the oversight of a doctor. Very frustrated. But,

GOT to do something quick!

Any more ideas out there??????

Thanks for your help!

[Guest guest]

Fergs wrote:

Thanks for your help, and I hope you don't mind, but I have more

questions...

> 1st question, who is your DAN! Dr? Unfortunately, choosing a DAN!

> Dr. straight from the list could be a problem because it doesn't

take

> much to get on the DAN! list. I know of several "fake" DAN!'s on

> that list. It's best to get referrals from parents.

We don't know many parents in the area who are pursuing recovery the

way that we are. ... We were pretty disappointed b/c

the dr. (a D.O.) seemed to want to stay within the vein of treatments

that were his own favorites. He even said some things that

contradicted what we have learned from the recoveryvideos site and

presentations.

You can test for metals in hair; and the results may be hard to

interpret: low mercury in hair might be because it is not getting

excreted well. It could be held tightly or not excreted because of

MB12 / methionine synthase deficiency.

Equally, chelation provoked tests can be hard to interpret. Mercury

may not show up till much of the other heavy metals have been

eliminated; so it ends up making sense over time.

If possible it would be good to find a more

sympathetic doctor: even by telephone consultation, who

might be versatile enough to suggest transdermal cream or suppositories

for chelation. If IV chelation did turn out to be the very best, ABA

or some other training can be used to help accept it, eventually.

I'll leave the other points to people who know about them.

He's in Broken Arrow, OK. Said that the only way to test for

mercury

in our son's body is when you start the chelation process. He uses

the I.V. method. I've heard such horror stories about it and we

are 'all about' safe. And I can tell you this: You had better give

my son a major sedative if you're going to stick a needle in his arm

for any length of time over 2 seconds! So ... why is he telling us

that you cannot test mercury levels with a hair sample? We didn't

even get to ask about the OATS test or the other one -- now I forget

the name of it. He just kept looking down his nose at us, or that

was how it seemed.

So how does the dosage go with the OLE? Can anyone help??? And I'm

still not sure if this is in place of Valtrex or if it's in place of

Nizoral / Diflu... (however that's spelled?) We're really in the

dark, but not sure we want to start over and find a new doctor.

We're running out of time before school starts and I feel almost

certain that we're going to have a regression period to battle.

Don't want his second grade teacher to take the brunt of it! (

>

> Famvir is an anti-viral just like Valtrex except it works slightly

> differently. I would fill it. We just recently switched from

> Valtrex to Famvir.

Doc kept saying that this Famvir was safer than Valtrex. Do we need

to be monitoring his liver or anything while he's taking these drugs

or natural supplements? ??

Vermox is an anti-parasite. If he has parasites,

> fill it.

I know nothing about any parasites. This was just something that the

doc shoved at us. I think we'll stick to the cloves and the other

natural thing that we bought for any parasites (IF in fact he would

even have any?)

STILL CONFUSED and not wanting to do anything even the slightest bit

dangerous without the oversight of a doctor. Very frustrated. But,

GOT to do something quick!

Any more ideas out there??????

Thanks for your help!

[Guest guest]

I think you should see a different doctor. You are obviously not

comfortable with this guy and I wouldn't be comfortable with anyone

that disregarded me the way he seemed to disregard you. You're best

bet to find a good one is to...ask the list! Where do you live and

how far are you willing to travel - within you're state and within

the surrounding areas as long as it's driving distance? I'm sure we

can help you find a reputable Doc.

The rest of my comments are below:

>

> We don't know many parents in the area who are pursuing recovery the

> way that we are.

You don't have to go to a support group to find one. Just ask on

your lists and you should get help! I asked this already but where

do you live?

>

> He's in Broken Arrow, OK. Said that the only way to test for mercury

> in our son's body is when you start the chelation process.

Well, in a sense, I suppose he's right (to an extent) but most people

prefer to use the urinary porphyrins test from www.labbio.net and

great plains is now offering it too (http://

www.greatplainslaboratory.com/).

> He uses

> the I.V. method. I've heard such horror stories about it and we

> are 'all about' safe.

Again, this is something you need to be fully comfortable with. And

you also want a *very* experienced person doing this, mistakes can be

deadly. With that said, many find iv chelation to be the best

chelation. There are a few horror stories out there but most (if not

all) are due to inexperienced people making major mistakes.

> And I can tell you this: You had better give

> my son a major sedative if you're going to stick a needle in his arm

> for any length of time over 2 seconds! So ... why is he telling us

> that you cannot test mercury levels with a hair sample?

Hair isn't the most reliable test and it's not easy to find someone

that can interpret it correctly. You can do it, but it isn't as

effective as urine from my understanding. I'm not chelating and

haven't gotten any of the test so maybe someone else can chime in

here with more specific information.

> We didn't

> even get to ask about the OATS test or the other one -- now I forget

> the name of it. He just kept looking down his nose at us, or that

> was how it seemed.

Find another doc. Don't ever see a doctor that thinks he knows

better than you. A doctor may know *more* than you but never

*better*. You are the parent and you make the final decision, not

him. You want someone that will listen to your concerns,

suggestions, questions, etc. He is a part of your team, not the team

leader. It's your responsibility to listen to him and learn and

research and then decide if it's right for you.

>

> So how does the dosage go with the OLE? Can anyone help???

Unfortunately, I can't. We are using Famvir so we haven't done OLE

(which would be an antiviral). Hopefully someone else will come in

here. If not, I will see what I can find out on another board.

> And I'm

> still not sure if this is in place of Valtrex or if it's in place of

> Nizoral / Diflu... (however that's spelled?) We're really in the

> dark, but not sure we want to start over and find a new doctor.

> We're running out of time before school starts and I feel almost

> certain that we're going to have a regression period to battle.

> Don't want his second grade teacher to take the brunt of it! (

> >

> > Famvir is an anti-viral just like Valtrex except it works slightly

> > differently. I would fill it. We just recently switched from

> > Valtrex to Famvir.

>

> Doc kept saying that this Famvir was safer than Valtrex. Do we need

> to be monitoring his liver or anything while he's taking these drugs

> or natural supplements???

Monitoring of the liver is usually because of the anti-fungal. Rx

antifungals can cause liver issues so you would want to test at least

every other month. The antiviral shouldn't be a problem with the

liver. Don't know about Vermox and liver although I don't think so.

Naturals it's not as necessary to monitor but any good doc should at

least do a lab occasionally, in my opinion. I don't know a whole lot

about naturals and liver as we are not doing DAN! and therefor have

few naturals in our arsenal. I think the only naturals we are doing

are probios, melatonin, multivitamins, kidgreenz and I just added

phosphatidyl choline and none of those need monitoring.

>

> Vermox is an anti-parasite. If he has parasites,

> > fill it.

>

> I know nothing about any parasites. This was just something that the

> doc shoved at us. I think we'll stick to the cloves and the other

> natural thing that we bought for any parasites (IF in fact he would

> even have any?)

You can self test for *some* parasites (definitely not all) by

putting a piece of clear scotch tape on the anus at night and then

coming back an hour or so later with a flashlight to pull the tape

off and look at it. If it has parasites, then there is a parasite

problem. I don't know if Vermox something you would want to use if

you don't have parasites. Someone else might be able to go into more

detail on this one, too. If not, again, I'll ask another board.

>

> STILL CONFUSED and not wanting to do anything even the slightest bit

> dangerous without the oversight of a doctor. Very frustrated. But,

> GOT to do something quick!

I would start with the naturals until you are perfectly comfortable

with the Rx. Have a look at www.danasview.net. Also, what else is

he recommending? Is this your first go at biomed?

Cheryl

[Guest guest]

Thank you for the link. I've looked at it briefly. Can you tell me

how long you've been using this OLE product and what kind of results

you've seen?

[Guest guest]

Cheryl (and anyone else out there who might have a suggestion

regarding a trusted DAN! doctor) ~

I mistakenly indicated that our doctor is in Broken Arrow. I meant

to say JENKS, OK. We live in the Tulsa area and would drive as far

as OK City.

I KNOW we need to start over with a different doctor. We are on our

own as far as the costs involved. We have chosen not to involve

insurance in order to avoid being denied down the road if and when

we switch insurance companies. So, even starting over with a

different practitioner is hard on the pocketbook.

We asked this doctor if he'd be willing to look at the

recoveryvideos site, and he said he would, but I have my doubts. No

one suggested or scheduled a repeat visit for us, so I'm thinking

that perhaps he was hoping we'd go away?

Guess I'm asking for any input from any of you members out there --

as Cheryl suggested. Any doctors' names you have to offer in the

Tulsa or Oklahoma City area???

Also, one of you mentioned a phone consultation with a doctor. How

would one go about doing that?

Thank you so much for all your help. Can't thank you enough...

Blessings,

(mom to )

[Guest guest]

Fergs wrote:

Cheryl (and anyone else out there who might have a suggestion

regarding a trusted DAN! doctor) ~

I mistakenly indicated that our doctor is in Broken Arrow. I meant

to say JENKS, OK. We live in the Tulsa area and would drive as far

as OK City.

I KNOW we need to start over with a different doctor. We are on our

own as far as the costs involved. We have chosen not to involve

insurance in order to avoid being denied down the road if and when

we switch insurance companies. So, even starting over with a

different practitioner is hard on the pocketbook.

We asked this doctor if he'd be willing to look at the

recoveryvideos site, and he said he would, but I have my doubts. No

one suggested or scheduled a repeat visit for us, so I'm thinking

that perhaps he was hoping we'd go away?

Guess I'm asking for any input from any of you members out there --

as Cheryl suggested. Any doctors' names you have to offer in the

Tulsa or Oklahoma City area???

In Vancouver, 7002 BC, Canada, we don't really have a DAN! doctor so I

can't answer your question, below, and am going to have to travel

myself for the best treatment. So this question needs to be answered

by anybody on the list whose doc handles the kind of problems you have

and who might be prepared to do a phone consultation. Skype

VoIP video consult? Sorry.

-----------------------

s Q:

We only recently discovered the anti-viral / anti-fungal info, and

wanted to try to treat our son BEFORE school starts in late Aug. The

doctor we chose off of the DAN list doesn't seem to be familiar with

this protocol and only gave us cloves & something else for

parasites and was pushing chelation. Also would not give us Valtrex,

but RXed something called Virmox and also Famvir??? (Haven't filled

those yet. Any help, here?) Not what we wanted.

In listening to some S.Kurtz interviews & presentations, we

decided to at least try OLE on our own -- but cannot figure out how to

dose it. Our son is 7 and weighs abt 50 lbs. We bought Paragon brand

& they are 300 mg.

I'm thinking that we are also supposed to have him on something like

Nizoral? Or am I confusing which is anti-v and which is anti-f? Please

help! We're under the gun trying to get his (hopeful) healing

regression over with before school starts. I'm pretty sure that we'll

experience this -- very likely since we've seen something like this

before. We had started him on digestive enzymes (AFP Peptizyde) several

years ago and it was almost unbearable! But on

the other side of the regression we had many gains in the areas of

speech and eye contact, etc.

has early infantile autism (as diagnosed through Dr. Rimland's

4-pg. checklist) and has progressed to the point that most people think

he has Asperger Syndrome. We've worked hard to make sure that he's

included in a regular classroom setting with typical peers (still has

pull-outs into the resource room for math & also for reading even

though his reading is exceptional. ) So, we hate for him to be going

nuts when school starts (because of this treatment

protocol) as we've been walking the tightrope with the school, trying

to keep him out of the nearby school with the contained classroom of

autistic children.

Anxious, but hopeful,

--------------------

Doc kept saying that this Famvir was safer than Valtrex. Do we need

to be monitoring his liver or anything while he's taking these drugs or

natural supplements? ??

------------------

Also, one of you mentioned a phone consultation with a

doctor. How would one go about doing that?

Thank you so much for all your help. Can't thank you enough...

Blessings,

(mom to )

[Guest guest]

Hi ,I've asked around and so far the closest I've gotten to you is Austin, TX.  The good thing about going here is if you have GI issues, Dr. Krigsman works out of Thoughtful House.  I know it's a bit farther than you want to travel, though.  OK is apparently lacking DAN!'s.  If I get any more responses I'll let you know but here's the info on Tx:The best bet close by is Thoughtful House http://www.thoughtfulhouse.org Dr. Jebson-excellent DAN They are in Austin TX.As far as phone consults go, most will want to see you at least once before they do phone consults for legal reasons but it is an option.  A lot of people living in areas where there are no Dr.'s will travel to see one and then do the rest of their visits over the phone/fax/e-mail with possibly one visit a year to the Dr.  CherylCheryl (and anyone else out there who might have a suggestion regarding a trusted DAN! doctor) ~I mistakenly indicated that our doctor is in Broken Arrow. I meant to say JENKS, OK. We live in the Tulsa area and would drive as far as OK City. I KNOW we need to start over with a different doctor. We are on our own as far as the costs involved. We have chosen not to involve insurance in order to avoid being denied down the road if and when we switch insurance companies. So, even starting over with a different practitioner is hard on the pocketbook.We asked this doctor if he'd be willing to look at the recoveryvideos site, and he said he would, but I have my doubts. No one suggested or scheduled a repeat visit for us, so I'm thinking that perhaps he was hoping we'd go away?Guess I'm asking for any input from any of you members out there -- as Cheryl suggested. Any doctors' names you have to offer in the Tulsa or Oklahoma City area???Also, one of you mentioned a phone consultation with a doctor. How would one go about doing that? Thank you so much for all your help. Can't thank you enough...Blessings, (mom to )

[Guest guest]

I forgot to mention that if you decide to go it alone, you should definitely study www.danasview.net and get lots of books.  You *can* do this without a doctor but it's hard and you won't be able to get Rx meds (mb12 shots, antivirals, antifungals, etc) unless you have a local doctor that is willing to work with you.  I think a ND's can Rx mb12 so if you can find a local ND that is open and willing, you may be able to work together.Some books:http://www.amazon.com/Biological-Treatments-Autism--Shaw/dp/0966123816http://www.amazon.com/Children-Starving-Brains-Treatment-Disorder/dp/1883647134/ref=pd_bbs_sr_1/104-4530008-9407959?ie=UTF8 & s=books & qid=1184860651 & sr=1-1http://www.amazon.com/Puzzle-Autism-Putting-All-Together/dp/0975967444/ref=pd_bbs_1/104-4530008-9407959?ie=UTF8 & s=books & qid=1184860690 & sr=1-1CherylOn Jul 18, 2007, at 10:05 PM, Fergs wrote:Cheryl (and anyone else out there who might have a suggestion regarding a trusted DAN! doctor) ~I mistakenly indicated that our doctor is in Broken Arrow. I meant to say JENKS, OK. We live in the Tulsa area and would drive as far as OK City. I KNOW we need to start over with a different doctor. We are on our own as far as the costs involved. We have chosen not to involve insurance in order to avoid being denied down the road if and when we switch insurance companies. So, even starting over with a different practitioner is hard on the pocketbook.We asked this doctor if he'd be willing to look at the recoveryvideos site, and he said he would, but I have my doubts. No one suggested or scheduled a repeat visit for us, so I'm thinking that perhaps he was hoping we'd go away?Guess I'm asking for any input from any of you members out there -- as Cheryl suggested. Any doctors' names you have to offer in the Tulsa or Oklahoma City area???Also, one of you mentioned a phone consultation with a doctor. How would one go about doing that? Thank you so much for all your help. Can't thank you enough...Blessings, (mom to )

[Guest guest]

-

There is also a DAN dr listed in on, Arkansas:

Alice R. Laule, MD,

6302A Hillside Lane

on, AR 72601

ph:

fax:

You might see what you could find out about her- NW Arkansas is not

too terribly far from your part of OK, is it?

Best of luck-

Sheri

>

> > Cheryl (and anyone else out there who might have a suggestion

> > regarding a trusted DAN! doctor) ~

> >

> > I mistakenly indicated that our doctor is in Broken Arrow. I meant

> > to say JENKS, OK. We live in the Tulsa area and would drive as far

> > as OK City.

> >

> > I KNOW we need to start over with a different doctor. We are on

our

> > own as far as the costs involved. We have chosen not to involve

> > insurance in order to avoid being denied down the road if and when

> > we switch insurance companies. So, even starting over with a

> > different practitioner is hard on the pocketbook.

> >

> > We asked this doctor if he'd be willing to look at the

> > recoveryvideos site, and he said he would, but I have my doubts.

No

> > one suggested or scheduled a repeat visit for us, so I'm thinking

> > that perhaps he was hoping we'd go away?

> >

> > Guess I'm asking for any input from any of you members out there -

-

> > as Cheryl suggested. Any doctors' names you have to offer in the

> > Tulsa or Oklahoma City area???

> >

> > Also, one of you mentioned a phone consultation with a doctor. How

> > would one go about doing that?

> >

> > Thank you so much for all your help. Can't thank you enough...

> >

> > Blessings,

> > (mom to )

> >

> >

> >

>

[Guest guest]

Thoughtful House will tell you everything they know about claiming on

insurance: perhaps they know about switching carriers later, too,

without getting denied (for being autistic?)

Cheryl Lowrance wrote:

>

> Hi ,

>

> I've asked around and so far the closest I've gotten to you is Austin,

> TX. The good thing about going here is if you have GI issues, Dr.

> Krigsman works out of Thoughtful House. I know it's a bit farther

> than you want to travel, though. OK is apparently lacking DAN!'s. If

> I get any more responses I'll let you know but here's the info on Tx:

>

> The best bet close by is Thoughtful House

> http://www.thoughtf ulhouse.org <http://www.thoughtfulhouse.org/>

> Dr. Jebson-excellent DAN

> They are in Austin TX.

>

> As far as phone consults go, most will want to see you at least once

> before they do phone consults for legal reasons but it is an option.

> A lot of people living in areas where there are no Dr.'s will travel

> to see one and then do the rest of their visits over the phone/fax/e-

> mail with possibly one visit a year to the Dr.

>

> Cheryl

[Guest guest]

Someone brought up something that is a great idea. I completely

forgot all about Rescue Angels! Here is the link to some in OK.

This is a great resource as you can e-mail some parents directly

(yes, they want you to, that's why they are listed) and find out more

information. Maybe they can tell you where to go to find a good DAN!

that's closer or help steer you to a naturopath or homeopath that's

good.

http://www.generationrescue.org/angels.php?state=OK

cheryl

[Guest guest]

I wanted to write with a warm " thank you " to all who've helped us to

locate a DAN! doctor nearest to us. Today (oops, I see it is now

after midnight, so I guess I should have said " yesterday!) Anyway,

I was on the phone all day getting the ball rolling. We're actually

in the midst of wanting to switch insurance also, so it's a

complicated situation! We've managed to keep the autism diagnosis

off of his medical records for this long and he's almost 7, so it

seems we might be headed into a sticky situation, but I'm still

positive we've made the correct move in seeking out biomedical

treatment.

After speaking with support staff members that work with Dr. Laule

(on, AR), I feel sure that we've made a wise choice! I'm very

hopeful that we'll finally get some great leads as far as treatment

options and I feel much safer NOT going it alone.

THANK YOU, THANK YOU, THANK YOU for your help. I appreciate the

welcome we've received here. Keep up the good work! I can tell you

it's already paying off in our own family.

God bless,

> >

> > Hi ,

> > I've asked around and so far the closest I've gotten to you is

> > Austin, TX. The good thing about going here is if you have GI

> > issues, Dr. Krigsman works out of Thoughtful House.