RE: why I support this list

November 26, 2008

Dear ,

Two weeks ago I took my $4100 in HBOT charges from the center where I was

treated, along with a cover letter, to Congressman Jim Oberstar's office in

Duluth, MN, where I live, and asked for a Congressional Inquiry, to help me get

reimbursed for my treatment for TBI. I had a doctor's written prescription for

the treatment, and included that as well.

I had previously contacted Senator Amy Klobuchar's office--probably five months

ago, now. Medicare has already sent a letter, regarding my case, to Senator

Klobuchar's office in Minneapolis/St. , saying that they don't pay for HBOT

therapy for TBI, and including a reference to federal statute about how to

appeal their decision.

I have a TBI; I don't know how to figure out how to appeal it, but I'm not

giving up. I'm asking my congressman to help me, and I also gave him a second

copy to send to TRICARE, as I am a military dependent, and maybe they will pay

for it, or part of it.

I'm waiting to see what happens, and if the government denies it, I will fight

that too. I'm not giving up. I'm not ever giving up on this fight, because

HBOT was helpful to me; I have seen it help other people. People with

disabilities were not, to my understanding, excluded from the Declaration of

Independence, in which Jefferson wrote, " All men are created equal, and

endowed by their Creator with certain inalienable rights; among these are.the

right to life, liberty and the pursuit of happiness. "

When the government denies treatment for treatable conditions, they deny us our

right to the pursuit of happiness, and I will fight for that right for every

person with a disability as long as I live.

I commend all that you have done, in creating and fostering this list, and

providing all of us with the information that is available. It takes a

tremendous amount of time and energy to do what you have done, and it has been

helpful to me, for sure, and no doubt to countless others as well. I know it is

a lonely road, and at times it just seems too long, and the difficulties too

hard and insurmountable.

All I can say as one woman with a traumatic brain injury is thank you, and God

bless you.

Sincerely,

> Judith,

> You're right. You should quit. By all rights this group is a miserable

> failure. There are nearly 1700 members, and the group

> has been in existence for just over seven years, and so far only

> about .1% (one tenth of one percent) of the members have pursued legal

> action seeking federally-mandated reimbursement of off-label HBOT for

> their brain-injured children.

> The one-tenth of 1% of members may actually be too

> high. The numbers may only be as high as .05%, maybe 10 people. Maybe

> a dozen.

> I've gone through it and am still going through it. It's still

> unresolved. The latest: The Georgia Department of Community Health

> (DCH) has constructed a labyrinth of nearly-impossible requirements

> that must be met before they'll pay for off-label HBOT for a child

> with cerebral palsy or autism. The most impossible is a requirement

> that treatments occur only in a UHMS-certified/ accredited facility.

> Well, that's a hospital, and every one of such facilities specifically

> bans the administration of off-label HBOT.

> It can be argued that document does represent a victory of sorts. It

> does represent an acknowledgement by the state of the benefits of off-

> label HBOT for cerebral palsy and autistic children. The very first

> person I sent that policy change document to was Hartsoe. I

> sent it to him in a private email last week or the week before when he

> was accusing me of yet one more thing to " destroy hyperbarics. "

> Flawed as it is, nonetheless, that document does represent a victory

> of sorts for us all. If it's a victory of all, why hasn't

> announced it? What does that mean?

> I have the document, the policy change in pdf, but I haven't posted it

> here yet. It's too depressing. In fact, everything about this whole

> business is depressing. While we have a federal law

> mandating HBOT, on the other hand, there's (obviously) a tremendous

> amount of apathy on the part of parents to pursue this. And frankly,

> if the only thing that's going to happen in the end is a UHMS

> roadblock, what's the point?

> I am in some preliminary conversations with some attorneys to go to

> federal court and fight it out there, but, no matter what, that still

> means a final resolution is still years away. So what should I do?

> Should I quit too?

> I'm so tired of all this shit.

> I understand Ohio Medicaid once paid you for treating a cp child. Then

> they called you up and said they made a mistake and requested you

> return the money.

> And you did.

> Without a fight.

> If we all continue without a fight, the alternative to

> victories or a final victory is this: Parents who seek

> out and obtain HBOT for their brain-injured children will continue to

> be a very, very, very small minority of parents of brain-injured

> children. My guess is around 5% to 10%. That means the status quo

> standard of care: of botox and nonbeneficial Speech, OT, and PT and

> surgeries and other bullshit remains the standard of care for 90% to

> 95% of all brain-injured children.

> Which means nothing ever changes.

> Nothing.

> That means the state will continue to dictate what is best for our

> children, despite it proven time and again the state's experts are

> wrong about what is best for our brain-injured children. At the same

> time, a year ago--a year ago-- Harch published a paper that proves

> HBOT results in the growth of new brain tissue. This means cure, or,

> in the language of Medicaid the " correction " of a " defect. "

> And still nobody pursues this, with the exception of a handful.

> Nobody fights for what is there for their most helpless of children to

> freely receive.

> Instead, we'd rather be at the mercy of the UHMS and Hartsoe

> and let a lunatic saboteur like e Creacy represent our best

> interests. We'd rather a Tom Fox demonize a company like Oxyhealth,

> we'd rather he actually accuse Oxyhealth of engaging in not only

> criminal activity but also intentionally and maliciously market a

> product that's " dangerous " for our children.

> Then, once Tom Fox et al are exposed for actually engaging in the

> criminal act that Oxyhealth is daily accused of, all of a sudden

> " things are just too negative on the listserv. "

> And now they've really gotten bad since e, the one saint we all

> thought was all for us has been exposed for deliberately trying to

> sabotage a Harch study that will prove forever the benefits of HBOT

> for brain-injury.

> That's just too negative.

> I'm not managing this group in order to buy a retirement home in St.

> Augustine. I don't make any money on this at all, and in fact, I give

> away too much of my time to the detriment of me and my family so I'm

> real close to throwing in the towel on this whole thing too.

> Judith, I don't think we've ever met in person. I habitually read

> everything you post because you're a great contributor, and I'll miss

> you if you leave, but this place called is a

> battleground. It just is.

> And I'm weary.

> [ ] Please

> remove me from this group

> >

> >Please remove me from this groupJeannie ForthuberProject

> AssistantUniversity of Central FloridaToni Jennings Exceptional

> Education InstitutePO Box 161250Orlando, Fl. 32816-1250jforthub@ mail.ucf.

edu407.823. 6705407.823. 1297

> fax " Leadership is caring more than others think wise, dreaming more

> than others think practical, risking more than others think safe and

> expecting more than others think possible. "

> >

> >___________ _________ _________ _________ _________ _________ __

> >Windows Live Hotmail now works up to 70% faster.

> > http://windowslive. com/Explore/ Hotmail?ocid= TXT_TAGLM_ WL_hotmail_

acq_faster_ 112008

> >

December 8, 2008

Thank you .

I've been a little down since reading the hbotruth page, wondering if

this is all worth it. Then I started going back through the

files of winning decisions, and it looks like the pattern is this: there

seems to be more success when the requesting family flies under the radar,

when they don't make too big a deal out of it.

In our own case, we've been at this so long, and they've admitted their

error, admitted we've been right all along, admitted the data we gave them

in 1999 was accurate, that Georgia Medicaid via the Georgia Department of

Community Health (DCH) has actually changed their policy. They've produced a

document that says this is how you get HBOT if your kid has cp or autism. So

that is a victory.

I haven't posted it on the files page yet, but I will. The first person I

sent it to, after I had it for about three weeks--was Hartsoe. He's

not mentioned it on any of his 5 million hyperbaric groups. It makes

me wonder if he's the hbotruth guy because the hbotruth doesn't give credit

where things are accomplished.

Well does have this habit of projecting his own sins onto others to

deflect blame. What better way to cover your tracks than to point at

somebody else and blame them. All that computerese code stuff he put out

there with my name on it. And then to make a post that I'm just wasting my

time. It's just consistent with his not telling people that Georgia Medicaid

has finally agreed to cover HBOT. It's not that he has to, but if he's

really interested in furthering access for everybody, why wouldn't he

announce a victory--no matter where it came from or who won the victory.

A victory is a victory.

And there's this other thing, and it's not really that big a deal, and maybe

I'm being nit-picky, but if you go on his web page at

http://www.miraclemountain.org, he's got a whole bunch of YouTube videos

linked on there, and most of them are from me--which I don't really care

that he doesn't mention; however, he's got Dr. 's 6-part lecture from

the 2001 symposium--which came from Ed Nemeth with Ed's request that the

Cherish Foundation must be given credit--but he doesn't give anybody credit.

I spent almost two weeks converting that video and loading it on YouTube and

maybe 50 people have actually watched the whole thing, but the point is,

won't give credit to anybody for doing something right

in HBOT-land--unless Hartsoe does something right.

Well, that's the same thing this hbotruth page is doing. It just points out

all the wrong things and never gives anybody credit for doing the right

things. So I'm officially suspicious.

As for Georgia Medicaid's new HBOT policy, the downside, DCH is mandating

services be received in a UHMS accredited facility.

Hey MackRN. Aren't you in Savannah? This means you can treat cp and autistic

kids. Will you push for it?

There is also a quiet effort to go to Federal court over all this, and I

wonder if our case could be used. With all the admissions of error on the

part of the state--all of which could be entered into evidence without

dispute--which further establishes the truth, that HBOT corrects (cures)

chronic brain-injury--and since that point is now conceded by the state, the

further denial of treatment with the UHMS mandate could create two things

with a federal decision.

1. The UHMS would be convicted of an ADA violation since the UHMS party-line

denial of HBOT for brain-injury--despite overwhelming evidence of

efficacy--this UHMS policy clearly discriminates against people with

disabilities. The UHMS would be forced to provide HBOT in hospital-based

clinics for brain-injured people. This would spill over into regular health

insurance as well since they too would be guilty of ADA violations if they

continued to deny reimbursement.

2. Because HBOT in hospital-based clinics is so expensive, typically 1000%

the cost of a free-standing clinic (FSC), a court decision would open things

up for more third-party paid HBOT in FSC.

You know, this hbotruth guy, I'm not really sure what s/he is after. The

post the other day about e Creacy's Breath of Life (BOL) clinic. I

don't think that's a bad thing that she's finally opening that up. She's

talked about it ever since I've known her. I know she believes in HBOT,

though I don't understand her desire to " work with " the UHMS. If all that

gets put aside and we just look at her business plan for BOL, I think it's

good. However, if she can lengthen the amortization time, or lengthen the

loan repayment period, if she can juggle the variables enough that she can

lower her rates, say cut them in half at least--if insurance

and Medicaid/Medicare starts paying for HBOT, she could have a pretty good

model for a clinic that could be duplicated everywhere.

And if they were all called Breath of Life--as brain-injured people do get

the breath of life poured into them when they get HBOT, well this would be a

good thing. This would be a great thing, especially if BOL clinics are built

everywhere. That would be great. And I would hope the old hyperbaric

housewife from hell really would make the cover of Time magazine. She would

deserve it, as long as she's on the up and up with everybody. As long as

she's not treating brain-injured vets at 2 ATA and above and setting us all

back.

Since the IHMA is finally getting its treatment registry up and running, the

more people who get insurance coverage in FSC, the more data gets collected,

the more indications get added.

So maybe this effort is not such a bad thing after all. If

I've been chasing windmills, well windmills do push air around, and if that

pushed air creates 7.5 pounds of air pressure, well that's the equivalent of

1.5 ATA.

So I'll take that.

DF

On Wed, Nov 26, 2008 at 5:30 PM, <xrascott@...> wrote:

> Dear ,

>

> Two weeks ago I took my $4100 in HBOT charges from the center where I was

> treated, along with a cover letter, to Congressman Jim Oberstar's office in

> Duluth, MN, where I live, and asked for a Congressional Inquiry, to help me

> get reimbursed for my treatment for TBI. I had a doctor's written

> prescription for the treatment, and included that as well.

>

> I had previously contacted Senator Amy Klobuchar's office--probably five

> months ago, now. Medicare has already sent a letter, regarding my case, to

> Senator Klobuchar's office in Minneapolis/St. , saying that they don't

> pay for HBOT therapy for TBI, and including a reference to federal statute

> about how to appeal their decision.

>

> I have a TBI; I don't know how to figure out how to appeal it, but I'm not

> giving up. I'm asking my congressman to help me, and I also gave him a

> second copy to send to TRICARE, as I am a military dependent, and maybe they

> will pay for it, or part of it.

>

> I'm waiting to see what happens, and if the government denies it, I will

> fight that too. I'm not giving up. I'm not ever giving up on this fight,

> because HBOT was helpful to me; I have seen it help other people. People

> with disabilities were not, to my understanding, excluded from the

> Declaration of Independence, in which Jefferson wrote, " All men are

> created equal, and endowed by their Creator with certain inalienable rights;

> among these are.the right to life, liberty and the pursuit of happiness. "

>

> When the government denies treatment for treatable conditions, they deny us

> our right to the pursuit of happiness, and I will fight for that right for

> every person with a disability as long as I live.

>

> I commend all that you have done, in creating and fostering this list, and

> providing all of us with the information that is available. It takes a

> tremendous amount of time and energy to do what you have done, and it has

> been helpful to me, for sure, and no doubt to countless others as well. I

> know it is a lonely road, and at times it just seems too long, and the

> difficulties too hard and insurmountable.

>

> All I can say as one woman with a traumatic brain injury is thank you, and

> God bless you.

>

> Sincerely,

>

> > Judith,

> > You're right. You should quit. By all rights this group is a miserable

> > failure. There are nearly 1700 members, and the group

> > has been in existence for just over seven years, and so far only

> > about .1% (one tenth of one percent) of the members have pursued legal

> > action seeking federally-mandated reimbursement of off-label HBOT for

> > their brain-injured children.

> > The one-tenth of 1% of members may actually be too

> > high. The numbers may only be as high as .05%, maybe 10 people. Maybe

> > a dozen.

> > I've gone through it and am still going through it. It's still

> > unresolved. The latest: The Georgia Department of Community Health

> > (DCH) has constructed a labyrinth of nearly-impossible requirements

> > that must be met before they'll pay for off-label HBOT for a child

> > with cerebral palsy or autism. The most impossible is a requirement

> > that treatments occur only in a UHMS-certified/ accredited facility.

> > Well, that's a hospital, and every one of such facilities specifically

> > bans the administration of off-label HBOT.

> > It can be argued that document does represent a victory of sorts. It

> > does represent an acknowledgement by the state of the benefits of off-

> > label HBOT for cerebral palsy and autistic children. The very first

> > person I sent that policy change document to was Hartsoe. I

> > sent it to him in a private email last week or the week before when he

> > was accusing me of yet one more thing to " destroy hyperbarics. "

> > Flawed as it is, nonetheless, that document does represent a victory

> > of sorts for us all. If it's a victory of all, why hasn't

> > announced it? What does that mean?

> > I have the document, the policy change in pdf, but I haven't posted it

> > here yet. It's too depressing. In fact, everything about this whole

> > business is depressing. While we have a federal law

> > mandating HBOT, on the other hand, there's (obviously) a tremendous

> > amount of apathy on the part of parents to pursue this. And frankly,

> > if the only thing that's going to happen in the end is a UHMS

> > roadblock, what's the point?

> > I am in some preliminary conversations with some attorneys to go to

> > federal court and fight it out there, but, no matter what, that still

> > means a final resolution is still years away. So what should I do?

> > Should I quit too?

> > I'm so tired of all this shit.

> > I understand Ohio Medicaid once paid you for treating a cp child. Then

> > they called you up and said they made a mistake and requested you

> > return the money.

> > And you did.

> > Without a fight.

> > If we all continue without a fight, the alternative to

> > victories or a final victory is this: Parents who seek

> > out and obtain HBOT for their brain-injured children will continue to

> > be a very, very, very small minority of parents of brain-injured

> > children. My guess is around 5% to 10%. That means the status quo

> > standard of care: of botox and nonbeneficial Speech, OT, and PT and

> > surgeries and other bullshit remains the standard of care for 90% to

> > 95% of all brain-injured children.

> > Which means nothing ever changes.

> > Nothing.

> > That means the state will continue to dictate what is best for our

> > children, despite it proven time and again the state's experts are

> > wrong about what is best for our brain-injured children. At the same

> > time, a year ago--a year ago-- Harch published a paper that proves

> > HBOT results in the growth of new brain tissue. This means cure, or,

> > in the language of Medicaid the " correction " of a " defect. "

> > And still nobody pursues this, with the exception of a handful.

> > Nobody fights for what is there for their most helpless of children to

> > freely receive.

> > Instead, we'd rather be at the mercy of the UHMS and Hartsoe

> > and let a lunatic saboteur like e Creacy represent our best

> > interests. We'd rather a Tom Fox demonize a company like Oxyhealth,

> > we'd rather he actually accuse Oxyhealth of engaging in not only

> > criminal activity but also intentionally and maliciously market a

> > product that's " dangerous " for our children.

> > Then, once Tom Fox et al are exposed for actually engaging in the

> > criminal act that Oxyhealth is daily accused of, all of a sudden

> > " things are just too negative on the listserv. "

> > And now they've really gotten bad since e, the one saint we all

> > thought was all for us has been exposed for deliberately trying to

> > sabotage a Harch study that will prove forever the benefits of HBOT

> > for brain-injury.

> > That's just too negative.

> > I'm not managing this group in order to buy a retirement home in St.

> > Augustine. I don't make any money on this at all, and in fact, I give

> > away too much of my time to the detriment of me and my family so I'm

> > real close to throwing in the towel on this whole thing too.

> > Judith, I don't think we've ever met in person. I habitually read

> > everything you post because you're a great contributor, and I'll miss

> > you if you leave, but this place called is a

> > battleground. It just is.

> > And I'm weary.

> > [ ] Please

> > remove me from this group

> > >

> > >Please remove me from this groupJeannie ForthuberProject

> > AssistantUniversity of Central FloridaToni Jennings Exceptional

> > Education InstitutePO Box 161250Orlando, Fl. 32816-1250jforthub@....

edu407.823. 6705407.823. 1297

> > fax " Leadership is caring more than others think wise, dreaming more

> > than others think practical, risking more than others think safe and

> > expecting more than others think possible. "

> > >

> > >___________ _________ _________ _________ _________ _________ __

> > >Windows Live Hotmail now works up to 70% faster.

> > > http://windowslive. com/Explore/ Hotmail?ocid= TXT_TAGLM_ WL_hotmail_

> acq_faster_ 112008

> > >

December 8, 2008

Thank you .

I've been a little down since reading the hbotruth page, wondering if

this is all worth it. Then I started going back

through the files of winning decisions, and it looks like the pattern

is this: there seems to be more success when the requesting family

flies under the radar, when they don't make too big a deal out of it.

In our own case, we've been at this so long, and they've admitted

their error, admitted we've been right all along, admitted the data we

gave them in 1999 was accurate, that Georgia Medicaid via the Georgia

Department of Community Health (DCH) has actually changed their

policy. They've produced a document that says this is how you get HBOT

if your kid has cp or autism. So that is a victory.

I haven't posted it on the files page yet, but I will. The first

person I sent it to, after I had it for about three weeks--was

Hartsoe. He's not mentioned it on any of his 5 million

hyperbaric groups. It makes me wonder if he's the hbotruth guy because

the hbotruth doesn't give credit where things are accomplished.

Well does have this habit of projecting his own sins onto

others to deflect blame. What better way to cover your tracks than to

point at somebody else and blame them. All that computerese code stuff

he put out there with my name on it. And then to make a post that I'm

just wasting my time. It's just consistent with his not telling people

that Georgia Medicaid has finally agreed to cover HBOT. It's not that

he has to, but if he's really interested in furthering access for

everybody, why wouldn't he announce a victory--no matter where it came

from or who won the victory.

A victory is a victory.

And there's this other thing, and it's not really that big a deal, and

maybe I'm being nit-picky, but if you go on his web page at

http://www.miraclemountain.org

, he's got a whole bunch of YouTube videos linked on there, and most

of them are from me--which I don't really care that he doesn't

mention; however, he's got Dr. 's 6-part lecture from the 2001

symposium--which came from Ed Nemeth with Ed's request that the

Cherish Foundation must be given credit--but he doesn't give anybody

credit. I spent almost two weeks converting that video and loading it

on YouTube and maybe 50 people have actually watched the whole thing,

but the point is, won't give credit to anybody for doing

something right in HBOT-land--unless Hartsoe does something

right.

Well, that's the same thing this hbotruth page is doing. It just

points out all the wrong things and never gives anybody credit for

doing the right things. So I'm officially suspicious.

As for Georgia Medicaid's new HBOT policy, the downside, DCH is

mandating services be received in a UHMS accredited facility.

Hey MackRN. Aren't you in Savannah? This means you can treat cp and

autistic kids. Will you push for it?

There is also a quiet effort to go to Federal court over all this, and

I wonder if our case could be used. With all the admissions of error

on the part of the state--all of which could be entered into evidence

without dispute--which further establishes the truth, that HBOT

corrects (cures) chronic brain-injury--and since that point is now

conceded by the state, the further denial of treatment with the UHMS

mandate could create two things with a federal decision.

1. The UHMS would be convicted of an ADA violation since the UHMS

party-line denial of HBOT for brain-injury--despite overwhelming

evidence of efficacy--this UHMS policy clearly discriminates against

people with disabilities. The UHMS would be forced to provide HBOT in

hospital-based clinics for brain-injured people. This would spill over

into regular health insurance as well since they too would be guilty

of ADA violations if they continued to deny reimbursement.

2. Because HBOT in hospital-based clinics is so expensive, typically

1000% the cost of a free-standing clinic (FSC), a court decision would

open things up for more third-party paid HBOT in FSC.

You know, this hbotruth guy, I'm not really sure what s/he is after.

The post the other day about e Creacy's Breath of Life (BOL)

clinic. I don't think that's a bad thing that she's finally opening

that up. She's talked about it ever since I've known her. I know she

believes in HBOT, though I don't understand her desire to " work with "

the UHMS. If all that gets put aside and we just look at her business

plan for BOL, I think it's good. However, if she can lengthen the

amortization time, or lengthen the loan repayment period, if she can

juggle the variables enough that she can lower her rates, say cut them

in half at least--if insurance and Medicaid/Medicare starts paying for

HBOT, she could have a pretty good model for a clinic that could be

duplicated everywhere.

And if they were all called Breath of Life--as brain-injured people do

get the breath of life poured into them when they get HBOT, well this

would be a good thing. This would be a great thing, especially if BOL

clinics are built everywhere. That would be great. And I would hope

the old hyperbaric housewife from hell really would make the cover of

Time magazine. She would deserve it, as long as she's on the up and up

with everybody. As long as she's not treating brain-injured vets at 2

ATA and above and setting us all back.

Since the IHMA is finally getting its treatment registry up and

running, the more people who get insurance coverage in FSC, the more

data gets collected, the more indications get added.

So maybe this effort is not such a bad thing after

all. If I've been chasing windmills, well windmills do push air

around, and if that pushed air creates 7.5 pounds of air pressure,

well that's the equivalent of 1.5 ATA.

So I'll take that.

DF

- Show quoted text -

--

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

404-725-4520 (cell)

770-491-6776 (phone)

815-366-7962 (fax)

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770-491-6776 (phone)

404-725-4520 (cell)

815-366-7962 (fax)

mailto:david@...

fearlessparents/

http://www. .com

http://www.davidfreels.com

December 8, 2008

We have never turned away anyone who can get their insurence to cover the

treatments.? Right now we seem to be having a special on fibromylagia, but have

treated several brain injuries (brainstem herniation sp shunt failure, breaking

a coma in a TBI from MVA and radionecrosis of the brain following radiation

therapy of brainstem).

?

Wayne McHowell, RN, BSN, ONC, CHRNA

[ ] Re: Why I support this list