Re: nexavir formerly kutapressin

[Guest guest]

Dear Roy,

I wanted to write you back right away with my experiences with kutapressin. I

was on it about 7 years, but I did not get the treatment until I was sick with

CFS for 9 years before that. Yes, in my case it did reduce fatigue somewhat ,

but it did not cure me of my illness. There are people who, if they are treated

much sooner than I was, not only have a marked reduction in fatigue, they have

their lives back in total; they are to work full time or go back to school and

resume their education. I was a patient of Dr. Enlander in NYC, who has

been using Kutapressin for years.

Mira

@...: roy.lobbett@...: Mon,

28 Jul 2008 13:05:21 +0000Subject: nexavir formerly

kutapressin

Does anyone on this or other sites use nexavir and if so how does it benefit

you. It is unclear to me the benfits casually spoken about it by vaious doctors

worldwide. It maybe a good immune modulator but what I really want to know is

does it reduce fatigue. Please note I am on the kutapressin/neavir site and to

date only had one clear answer about neavir reducing

fatigue.thanksRoy==========================================[Moderator: The

current poll has:1/7 chance of losing ground2/7 chance of no impact4/7 chance of

significant improvementsee

/surveys?id=2734979]

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[Guest guest]

My adult daughter and I both tried it. It didn't help either of us

with our fatigue. felt much worse on it, but the doctor

thought it must have been an allergic reaction. I felt it might have

been helping my FM pain a bit but definitely not worth the expense

for us. But I have read that it definitely helps lots of people - so

once again, different people - different experiences. Just our 4

cetns worth -

in Calgary

>

> Does anyone on this or other sites use nexavir and if so how does it

> benefit you. It is unclear to me the benfits casually spoken about

it

> by vaious doctors worldwide. It maybe a good immune modulator but

what

> I really want to know is does it reduce fatigue. Please note I am on

> the kutapressin/neavir site and to date only had one clear answer

about

> neavir reducing fatigue.

>

> thanks

>

> Roy

> ==========================================

> [Moderator: The current poll has:

> 1/7 chance of losing ground

> 2/7 chance of no impact

> 4/7 chance of significant improvement

> see /surveys?

id=2734979

> ]

>

[Guest guest]

Thanks Mira

I'll welcome any other feedback from anyone . Since Dr.Meirlier also

uses nexavir but it is unclear to me what it does from his perspective.

I tried to get an ME specialist to support the use of nexavir in the uk

but to no avil because it had not been okayed by the UK NHS. The

specialist was told by his union he could be liable if something went

wrong. In addition no UK nurse will inject me or even show me how to

inject myself in case something goes wrong and they will lose their job.

I did find a reasonably local doctor to my area who is partially

supporting some-one who is trying nexavir but that person has been to

Belgium to be assessed and I am not well enough for that.

I am hoping to get enough evidence to persuade my new local doctor or my

new ME specialist to help me.

Thanks for the quick reply

Roy

nexavir formerly kutapressin

Does anyone on this or other sites use nexavir and if so how does it

benefit you. It is unclear to me the benfits casually spoken about it by

vaious doctors worldwide. It maybe a good immune modulator but what I

really want to know is does it reduce fatigue. Please note I am on the

kutapressin/neavir site and to date only had one clear answer about

neavir reducing

fatigue.thanksRoy==========================================[Moderator:

The current poll has:1/7 chance of losing ground2/7 chance of no

impact4/7 chance of significant improvementsee

/surveys?id=273497

9]

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[Guest guest]

Hi Mira and others, how much Nexavir/Kutapressin were/are you taking weekly

http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\

resh_messenger_video_072008

[Guest guest]

Dear Roy,

Dr. Enlander, my CFS specialist is from the UK. He has lived in NYC for a long

time, but maintain ties with his country. Look for his website using google and

then look at it.

If you want to ask him a question. Please write to him at this address:

DEnlander@...

Mira

@...: roy.lobbett@...: Mon,

28 Jul 2008 17:59:00 +0100Subject: RE: nexavir formerly

kutapressin

Thanks MiraI'll welcome any other feedback from anyone . Since Dr.Meirlier

alsouses nexavir but it is unclear to me what it does from his perspective.I

tried to get an ME specialist to support the use of nexavir in the ukbut to no

avil because it had not been okayed by the UK NHS. Thespecialist was told by his

union he could be liable if something wentwrong. In addition no UK nurse will

inject me or even show me how toinject myself in case something goes wrong and

they will lose their job.I did find a reasonably local doctor to my area who is

partiallysupporting some-one who is trying nexavir but that person has been

toBelgium to be assessed and I am not well enough for that.I am hoping to get

enough evidence to persuade my new local doctor or mynew ME specialist to help

me.Thanks for the quick replyRoy nexavir formerly

kutapressinDoes anyone on this or other sites use nexavir and if so how does

itbenefit you. It is unclear to me the benfits casually spoken about it byvaious

doctors worldwide. It maybe a good immune modulator but what Ireally want to

know is does it reduce fatigue. Please note I am on thekutapressin/neavir site

and to date only had one clear answer aboutneavir

reducingfatigue.thanksRoy==========================================[Moderator:Th\

e current poll has:1/7 chance of losing ground2/7 chance of noimpact4/7 chance

of significant

improvementsee/surveys?id=\

2734979] __________________________________________________________Connect to

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ltagline[Non-text portions of this message have been

removed]------------------------------------This list is intended for patients

to share personal experiences witheach other, not to give medical advice. If you

are interested in anytreatment discussed here, please consult your doctor.

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[Guest guest]

I took the kuta injections from dr. Enlander for 1 yr and 5 months,

and no results for me. I have been suffering since 1989..

>

> Does anyone on this or other sites use nexavir and if so how does it

> benefit you. It is unclear to me the benfits casually spoken about

it

> by vaious doctors worldwide. It maybe a good immune modulator but

what

> I really want to know is does it reduce fatigue. Please note I am on

> the kutapressin/neavir site and to date only had one clear answer

about

> neavir reducing fatigue.

>

> thanks

>

> Roy

> ==========================================

> [Moderator: The current poll has:

> 1/7 chance of losing ground

> 2/7 chance of no impact

> 4/7 chance of significant improvement

> see /surveys?

id=2734979

> ]

>

[Guest guest]

Dear Mariska,

Dr. Enlander said that 30% of his patients do not respont to the kutapressin.

You were in that percentage unfortunately. I responded mildly, that is, I was

better and I could somehow function from day to day. I could walk dogs, go

grocery shopping, clean and cook for myself and my then husband. The rest of the

day I spent sitting down and talking on the phone or sleeping for a few hours in

the afternoon. I could not have a job because I got tired very easily and I

could not concentrate. What the kutapressin did for me was to make me more

functional. I was on over 20 pills a day to control my symptoms at that time. A

horrible way to live.

Some people on the treatment were able to go back to living full lives. I don't

know what the percentage of these people is and how long they were sick before

they got the treatment.

Mira

@...: mariska31@...: Mon, 28 Jul

2008 19:52:24 +0000Subject: Re: nexavir formerly kutapressin

I took the kuta injections from dr. Enlander for 1 yr and 5 months, and no

results for me. I have been suffering since 1989..>> Does anyone

on this or other sites use nexavir and if so how does it> benefit you. It is

unclear to me the benfits casually spoken about it> by vaious doctors worldwide.

It maybe a good immune modulator but what> I really want to know is does it

reduce fatigue. Please note I am on> the kutapressin/neavir site and to date

only had one clear answer about> neavir reducing fatigue.> > thanks> > Roy>

==========================================> [Moderator: The current poll has:>

1/7 chance of losing ground> 2/7 chance of no impact> 4/7 chance of significant

improvement> see

/surveys?id=2734979> ]>

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[Guest guest]

Thanks I already have this information and a book by Dr.Erlander but to

date there does not seem to be any clear information from him apart from

the 30% possibility of helping some-one. I just wanted to see if my

symptoms matched the 30% group. I am also at risk taking this since I

have bipolar disorder as well as CFS and my bipolar is stable with

medication and me taking things easy.

[MODERATOR: Dr. Dr e Bottero in Paris,France works may be of interest

" studied 98 patients with CFS and 79 with psychological diseases treating them

all with 6 months antibiotic regimes. Up to 85% patients in both groups have had

positive outcomes. The studies were not placebo controlled or blinded. He

acknowledges that other infections such as mycoplasma and viruses may also be

implicated. "

see http://www.ahmf.org/99vallings.html alsom as a FYI:

See http://suppi.net/slg/sitey/index.php?lymes

Specialist: Dr Bottéro (Nyons). General practician: Dr. Tyrone (Nyons)

Researchers: Dr e Bottéro (Nyons, France), Dr Cécile Jadin (South

africa), Prof Garth L. Nicholson (USA) Prof. Montagnier (France)

]

It is unknown what effects nexavir

will have on me -even starting at lower dosages. I will continue to

explore this in the UK.

Cheers

Roy

[Guest guest]

Roy,

I looked many places for information on Nexavir...asking here, looking it up in

these archives, and looking in the archives of the Kutapressin group.

I also found very interesting looking it up under *Kutapressin*...in the

archives of this group and in google search. I found information scattered

multiple places, from CFS and other patients at least back to the 90s. But it

was around was around much longer than that. (And was the same thing as Nexavir

is now).

Dr. Cheney told my he was prescribing it to me becasue it is an anti-viral, and

probably anti- " other pathogens " . I may have missed what else he said but I

" accidentally " discovered that it relieved my heart symptoms (I have the

Cardiomyopathy/Diastolic Dysfunction found in ME/CFS patients). This would

happen in 30 minutes or less, using the gel form.

I don't really have the word " fatigue " in my vocabulary, but more like

significant weakness, poor stamina. After awhile I did notice I had more

" strength " , which could be called *energy* and stamina.

I have used Nexavir gel for 3 years, except for a couple or more months in which

I definitiely became weaker again.

I have had some cardiac setback since, but this is especially if I'm not taking

Hawthorn too.

In addition to Magnesium injections. So...many variables, and other

complications, and treatments,

but some consistent benefits when on Nexavir.

Even not feeling the greatest lately, I have currently been walking every day

and am driving and out for awhile a couple of times every day.

A very interesting article or study I saw said that Nex/Kutapressin's bottom

line function may be repair of damage at cellular level.

Kuta was still being studied when the company sold it years ago. It has only

returned as Nexavir the last 3 or so years, and the studies which cost millions

have not been repeated or continued yet.

This is why you may find more under Kutapressin, and even that was still

ongoing.

Katrina