kutapressin

[Guest guest]

I found this but all else was on discussions of it, Hope this helps Drs. &

You'll

http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?db=m_s

<A HREF= " http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?db=m_s " >PubMed

medline query</A>

[Guest guest]

Michele

how did your appt go?? My family and I got sick and I was too ill to go to

mine.

Kutapressin

>From: Michele Umbach <musharina73@...>

>

>Hi everyone. Tomorrow, Monday, is my " big day " to go

>and see a new docotr, Dr. Enlander. I have heard, from

>several people (including his office) that he uses

>Kutapressin shots as one of his forms of treatment.

>

>I know this has been discussed on the list and so I

>went to Onelist, hoping to be able to just look it up,

>but that isnt an option on the site, so I was just

>hoping if someone would be able to give me an overview

>on this drug, again....what exactly is it, any long

>term side effects, etc.

>

>Thanks in advance and Ill be sure to let you all know

>how it goes!

>

>Michele U.

>

>_________________________________________________________

>

[Guest guest]

Michele, Enlander does use kutapressin. He was testing for mycoplasma

as well, but did not seem to have a good understanding of it or its

treatment. Do not quote me on that to him. IF he tests you do not let

him send your blood samples to Washington,DC to Dr. Lo at the Armed

Forces Pathology Lab. His test is grossly inaccurate. If you want to be

tested for mycoplasma let me know and I will send the addresses and

phone numbers of the reliable labs in the US. There is one in New

Jersey, close to you.

a

Michele Umbach wrote:

>

> From: Michele Umbach <musharina73@...>

>

> Hi everyone. Tomorrow, Monday, is my " big day " to go

> and see a new docotr, Dr. Enlander. I have heard, from

> several people (including his office) that he uses

> Kutapressin shots as one of his forms of treatment.

>

> I know this has been discussed on the list and so I

> went to Onelist, hoping to be able to just look it up,

> but that isnt an option on the site, so I was just

> hoping if someone would be able to give me an overview

> on this drug, again....what exactly is it, any long

> term side effects, etc.

>

> Thanks in advance and Ill be sure to let you all know

> how it goes!

>

> Michele U.

>

> _________________________________________________________

>

[Guest guest]

Hey Tim and all, what makes you think pig liver extract is safe?

Haven't y'all heard of prions and mad cow disease? Ya can't even cook

those little boogers to death, so how do we know stuff from animals is

safe? I have this problem with the amimal products. Am I crazy? Maybe

this crud has gotten to my brain.

a

candtcampbell@... wrote:

>

> From: candtcampbell@...

>

> Michele,

>

> I don't know if anyone has mentioned it (Juno wouldn't let me see a few

> digests), but Kutapressin is basically just pig liver extract. So it's

> probably very safe and has no long-term side-effects.

>

> Tim

>

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[Guest guest]

I agree that the Kutapressin injections are painless. They were ineffective

in my case:(

My doc, Levine in NYC, still says that Kutapressin is great, she was

on the CFS radio show not too long ago, and said that it was one of the

things that she has seen really work well.

Barb

[Guest guest]

how much are you taking when I started out I was doing 2cc a day then I

dropped to 3 days a week and now once a week. I have relapsed on kutapressin

but maybe it will help in the long run

LOL

Steve

> Re: kutapressin

>

>

> From: KB46@...

>

> I agree that the Kutapressin injections are painless. They were

> ineffective

> in my case:(

> My doc, Levine in NYC, still says that Kutapressin is great, she

> was

> on the CFS radio show not too long ago, and said that it was one of the

> things that she has seen really work well.

> Barb

>

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[Guest guest]

In a message dated 5/22/99 11:31:38 AM Eastern Daylight Time,

janel@... writes:

<< but I'd like to feel safe re these

products as I think being contaminated with smthng else is the last thing

any of us need. >>

The meds are carefully checked and rechecked so there's little, if any,

chance of contamination. The TF that my daughter was on was from a known

donor and even then it went through three purification processes. But you're

wise to check on each particular thing.

Gail

[Guest guest]

Carol wrote: " Cheney suspected that it (kutapressin) was =

killing off so many viruses (and even candida) that it was littering my =

system with junk that my immune had to rev up even higher to clean up. "

I don't understand. If viruses are being killed off (I didn't know

kutapressin could kill viruses), then why wouldn't your tolerance level

increase after enough time has elapsed?

___________________________________________________________________

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[Guest guest]

I know that Kutapressin can inhibit HHV-6A, but it won't kill it.

Gail

[Guest guest]

People give kutapressin credit for all kinds of things. I have been taking

it for 6 months and still take it. However I think sometimes Drs. say things

to keep the patients spirits up. Who knows maybe kutapressin does kill virus

or allows the bodies own system to kill them. I would not bet money on it

and I think that there is a tendency to exaggerate the power of kutapressin.

At least it does not make you sick. I have taken as much as 3cc a day.

LOL

Steve

> Re: kutapressin

>

> From: April L Tyree <tyree.pines@...>

>

> Carol wrote: " Cheney suspected that it (kutapressin) was =

> killing off so many viruses (and even candida) that it was littering my =

> system with junk that my immune had to rev up even higher to clean up. "

>

> I don't understand. If viruses are being killed off (I didn't know

> kutapressin could kill viruses), then why wouldn't your tolerance level

> increase after enough time has elapsed?

>

> ___________________________________________________________________

> You don't need to buy Internet access to use free Internet e-mail.

> Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

> or call Juno at (800) 654-JUNO [654-5866]

>

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> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

[Guest guest]

Carol wrote:

<<Kutapressin stopped my fever, except when I really overdo - as Dwanna

mentioned. (Makes sense, as Kutapressin is an antiviral.)>>

I'm curious about the experience others have had with Kutapressin. I know

it's been around for awhile but I've never heard first-person stories.

Carol, what dosage do you take also? Thanks!

Peggy

[Guest guest]

I have been on Kutapressin for about 8 months. I started to recover for a

while but I am not sure if it was do to kuta. I decided to stop taking it up

my lymph nodes started to swell. At first I took it every day, then every

other day, not about twice a week. I give myself about 2.5 to 3ccs each

shot.

How do others take kuta?

thanks

Steve

> Re: Kutapressin

>

> From: Peggomatic@...

>

> Carol wrote:

>

> <<Kutapressin stopped my fever, except when I really overdo - as Dwanna

> mentioned. (Makes sense, as Kutapressin is an antiviral.)>>

>

> I'm curious about the experience others have had with Kutapressin. I know

>

> it's been around for awhile but I've never heard first-person stories.

> Carol, what dosage do you take also? Thanks!

>

> Peggy

>

> ---------------------------

[Guest guest]

Hi,

>Anyone get this stuff (kutapressin) covered? I used to but not with new

>insurance. Wondering if a letter of med neccesity would help. (first

>would

>have to prove viability to my doc who " lets " me try things sometimes

>without

>full understanding or approval...)

Amazingly enough, my Blue Cross covered it without a whimper.

As for proving viability - the most recent study I saw, double-blind (now

over 2 years ago) said that kutapressin did not have any significant impact

on CFS.

Jerry

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[Guest guest]

> Amazingly enough, my Blue Cross covered it without a whimper.

>

> As for proving viability - the most recent study I saw, double-blind (now

> over 2 years ago) said that kutapressin did not have any significant

impact

> on CFS.

>

> Jerry

One of my sons is taking Kutapressin and BC is covering it. It is a little

more than our normal co-pay though. It has been another piece of what helps

him. Their ped combines alot of different things to take the stress off of

the immune system. Each thing was added one step at a time. I don't think

anything by itself would be enough, but everything combined has made a

tremendous difference.

Cheryl

[Guest guest]

I get it covered & I take it but I would guess the impact is marginal -- like a

lot of things I take.

Steve

Jerry wrote:

> From: " Jerry " <jerrycam@...>

>

> Hi,

> >Anyone get this stuff (kutapressin) covered? I used to but not with new

> >insurance. Wondering if a letter of med neccesity would help. (first

> >would

> >have to prove viability to my doc who " lets " me try things sometimes

> >without

> >full understanding or approval...)

> Amazingly enough, my Blue Cross covered it without a whimper.

>

> As for proving viability - the most recent study I saw, double-blind (now

> over 2 years ago) said that kutapressin did not have any significant impact

> on CFS.

>

> Jerry

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> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Hi, ,

wrote:

>

>Does anyone have any thoughts on Kutapressin? After reading some of the

>things I have read about it lately, I don't understand why we aren't

>ALL on it!!!

I tried kutapressin about 3 years into my CFS. Got nothing out of it but

more needlesticks.

Blue Cross actually covered it - & this after double-blind tests showed that

it was not effective. They won't pay for things that are proven to help, but

pay for this. Shows how much they know about CFS. (They were going to give

me case management services, as soon as they located someone who knows about

CFS - that was 18 mo ago & I'm still waiting...)

Jerry

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[Guest guest]

In a message dated 6/28/2000 9:02:18 PM Pacific Daylight Time,

jerrycam@... writes:

<<

I tried kutapressin about 3 years into my CFS. Got nothing out of it but

more needlesticks.

Blue Cross actually covered it - & this after double-blind tests showed that

it was not effective. They won't pay for things that are proven to help, but

pay for this. Shows how much they know about CFS. (They were going to give

me case management services, as soon as they located someone who knows about

CFS - that was 18 mo ago & I'm still waiting...)

>>

It helps some people. It helped me and I know of others. It must be at

least 2 ccs a day, and it took 8 solid weeks, daily, before I was helped. If

you know you have active hhv6, it might be more worth trying, because it has

in vitro effectiveness against hhv6. Your insurance may have paid for it

because they thought you were taking it for something other than cfids. It

is an approved drug under some insurance policies for herpes zoster, I

believe, and a few other things. The drug people at the insurance co. may

not have looked into too carefully that it was being prescribed in an

" off-label " way.

[Guest guest]

Hi,

Had 125 Kutapressin injections, no significant improvement. Costs 150

dollars per 10 injections. Tested positive for HHV-6. In my opinion,

don't waste your money.

Newton

> Hi,

>

> Does anyone have any thoughts on Kutapressin? After reading some of

the

> things I have read about it lately, I don't understand why we

aren't ALL on

> it!!!

>

>

>

> " Do me a favor, Doc. Tell me something good. "

> - Ellen Burstyn in The Exorcist

[Guest guest]

In a message dated 9/26/2000 11:27:03 AM Pacific Daylight Time,

catherine_holt@... writes:

<< My insurance company is covering it, but wants to cover a lower dosage than

I actually need >>

Can you tell me the rationale/diagnosis your doctor gave the insurance

company in order for them to cover the kutapressin? I have an active hhv6

infection, and of the many, many, many things I have tried, nothing has

helped like kutapressin! Thanks!

[Guest guest]

Scroll down this page, or do a find for " kutapressin " :

http://www.abcjb.com/fm/fmcfsinfo/chronic_fatigue_syndrome_and_its.htm

I just started on it last week. It's supposed to take a month to start

working, but I'm lucky - I'm getting a great response right away.

Apparently people with viral infections have the best response to it.

My insurance company is covering it, but wants to cover a lower dosage than

I actually need - I think I'm going to be able to straighten it out. (I have

Blue Cross.) If not, it would cost about $330 a month.

> Could someone please tell me how I can find out about

> Kutapressin..... ..maybe in the back files somewhere, or does anyone

> have any firsthand info? Thanks.

> Anne

>

>

__________________________________________________

[Guest guest]

> << My insurance company is covering it, but wants to cover a lower dosage

than

> I actually need >>

> Can you tell me the rationale/diagnosis your doctor gave the insurance

> company in order for them to cover the kutapressin? I have an active hhv6

> infection, and of the many, many, many things I have tried, nothing has

> helped like kutapressin! Thanks!

I have Blue Cross, and they've been really good about covering things. As

far as I know, my doctor just wrote the prescription and they covered it

without making him give them an explanation. But they want to cover 1 ml

per day, which is annoying.

The standard usage seems to be for acne treatment, so you could try getting

covered for that.

__________________________________________________

[Guest guest]

Thanks and Jane for your suggestions! As I do have active hhv6,

and there really are few treatment options, I think he will want to try this

one first. I don't think they would pay for it if they thought it was for

acne, because they consider that cosmetic. How long are the needles that you

guys are using? I am using 5/8 inch for injection. Did you know that if you

change the needle after you draw the solution out of the bottle, the

injection is less likely to hurt. Even just inserting the needle into the

top of the bottle dulls it a little and duller needles hurt more. So, I use

two different needles. Thanks again!

[Guest guest]

My doctor at the time wrote a letter saying I had actice hhv6 and that there

were little if any treatment options other than Kutapressin. Don't know if

that helps.

> Can you tell me the rationale/diagnosis your doctor gave the insurance

> company in order for them to cover the kutapressin?

[Guest guest]

As far as the injections { B12 and Mag} does anyone do their own shots? I get

shots every other night in my bottom . Can they be done anywhere else? I

would like to do them myself and not have to depend on having my boyfriend

around at the right time to do them . a

[Guest guest]

From: <Inthepresent@...>

> acne, because they consider that cosmetic. How long are the needles that

you

> guys are using? I am using 5/8 inch for injection. Did you know that if

you

> change the needle after you draw the solution out of the bottle, the

> injection is less likely to hurt.

I'm using the same needle I use for B12 injections - not sure what it's

called, but it's IM and has a 2 inch needle. I find I can keep the bruising

down if I go really slow and take a minute or two to get all 2 mL in there.

_________________________________________________________