posts

[Guest guest]

Hi Carol,

What parasite protocol did you use?

Carol Hammitt wrote:

> Greetings fellow posters/lurkers. Washington checking in. I feel I know

> each of you and am thankful for your posts. Pearl and ...me too.

> Have been thinking two things, body is telling me in no uncertain terms what

> it doesn't want and is this related to my cycle? Food is so disagreeable I

> am preparing to do the master cleanse - lemon juice, grade b maple syrup and

> cayenne pepper to taste ( ? ) in water all day for I anticipate up to 40

> days. AND looking forward to it ! Have completed parasite protocol will do

> mop up with CoQ10 this week end and Monday begin cleanses. I read all the

> posts to all the groups and would appreciate any suggestions regarding the

> reintroduction of food following the cleanses...am considering starting with

> chlorella. Carol

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

> Send blank message to candidiasis-unsubscribeonelist if you want to

UNSUBSCRIBE !

>

[Guest guest]

Yes, this list is censored -- in that communications that don't adhere to

the guidelines are not approved. The guidelines are written to make the

this a better forum and resource for all of us. You received the

guidelines when you signed up, and they are posted the list once a month.

I suggest you read them again, because your decision to be here means you

accept them as written. If you do not accept the guidelines as written,

please unsubscribe now.

The guidelines prevent profanity, flame wars, and other posts which are

counterproductive to the purpose and usefulness of the list. Furthermore,

regarding moderation, its method and reasons are very utilitarian, and

are clearly explained in the first section of the guidelines. They do not

give the administrators any kind of license to discriminatorily suppress

the opinions of others.

Lastly, the way this list is administered in no way infringes upon your

right to free speech. You are free to start your own Group, make

your own rules, and say whatever you want on your list. You are even free

to announce the creation of your list on this list. And people who are

interested in hearing what you have to say are free to join it. It's free

speech at its best.

Dave

On Thu, 12 Dec 2002, sophia <herbslady@...> wrote:

> WE ALL KNOW THIS IS MONTERED . BUTS LET GET REAL IF ALL POST DONT

> GET POSTED IS THAT SENSSOR SHIP THIS IS AMERICA LAND OF THE FREE !!

> AND THAT INCLUDS OUTHER OPIONS THAT WE MAY NOT

> LIKE ......................THANK YOU .. AN AMERICAN THAT IS FREE

>

>

>

>

> ===

>

[Guest guest]

sophia writes:

<WE ALL KNOW THIS IS MONTERED . BUTS LET GET REAL IF ALL POST DONT

GET POSTED IS THAT SENSSOR SHIP THIS IS AMERICA LAND OF THE FREE !!

AND THAT INCLUDS OUTHER OPIONS THAT WE MAY NOT

LIKE ......................THANK YOU>

I assume you are referring to the First Amendment and freedom of speech. If so,

you might want to re-read it. The clause states that government shall make no

law abridging speech. It does not apply to private groups, including internet

mailing lists, which may place such restrictions on their memberships.

luthien

[Guest guest]

Joanne, I just came home from a double fusion and lamenectomy on Monday, so have posted little. I have been up and doing pretty good except for a fever and the incision is bleeding still...but have not gone back to ER to have it checked.

I did write to Tony, but his email has been cut off...his email was sent back to me...I am very very worried. I wrote , but she too has not written back to me. I don't like how it all feels.....I am very very worried about our precious TOny.

Debby

[ ] Posts

Hi all.went to read new posts and there isn't a single one! Gosh.what happened? Everyone busy? I hope you are all well and not too sick to post. I know JoLynne has been ill..... bad reaction to a new med. May you all have a good weekend and everyone in the path of Wilma take care. Joanne

Jj Cathcart

jjcathcart@...

EarthLink Revolves Around You.

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.344 / Virus Database: 267.12.4/146 - Release Date: 10/21/2005

[Guest guest]

>

> I have posted several messages over the past few days that were not

> addressed. I was challenging some of the advice this sight gives. Any

> reason negative comments and inquiries are ignored?

>

Hi ,

I read your posts and IMO, the best person to address the issues you

raised is the list owner, Bee. It is her program that we are following

so she would be the best person to explain.

I can tell you with certainty that it's not in her nature to ignore

comments. I do know that her job limits her computer time during the

week, so it's possible that she just hasn't gotten to your posts yet.

I know she has answered some things that have been posted since yours,

but perhaps yours require more time than she has had available.

To prevent your posts from getting lost in the shuffle, you might try

reposting them and along with your original subject line add Bee's

name to it too. Her name will sort of " flag " the post so she will be

sure and see it.

hope that helps a bit,

jackie

[Guest guest]

Kathleen,

The two post you are speaking of are there in the list just

fine....check #6309 and #6312.

Cam

[Guest guest]

It does seem like this site is being visited less and less.

On the other hand the PBC web group is quite active. You may wish to

list your question there too. They too are very nice and do not

neglect the non-PBC liver questions. </p>

It seems the doctors are on the right path with your brother. KEEP

asking questions, and make them explain. Yes, the liver is the one

organ that can heal itself after certain type of damage or disease. I

am not sure AIH or hepatitis are those that the liver heal after, but

if your doctor says so.... be grateful. But like I said keep talking

to the doctors and get a 2nd opinion if necessary. If his liver

tested OK with a biopsy, that is the good news. You are quite

fortunate that your doctors are taking his symptoms so seriously and

that too is good news.

Clara from OR

>

> I have not received any post from the 10th on.. I looked a the web

> sight and it appears that no one has posted since the 10th is this

> correct or am I just not receiving the postes.

>

> I have a question. My brother whom is younger then I am, was

> having blood clots and when they were doing his blood work they

> noticed his liver enzymes were slightly elevated like 100, so

> knowing about my AIH desided to do a byopsy, they said they found no

> sign of AHI although, his liver had been sick and was healing its

> self. Anyone every hear of this. And could he just be having early

> signs of AHI that are undetected. He also has a slightly elevated

> iron leavel, so they are also checking him for hemochromotosis, for

> the Geen. I was tested for it myself befor my dx, because they

> thought that is what my mother died from (She died of a under dx

> liver failer) We had no otopsy done on her because she had us

> promise we would not do such a thing to her. Although this was

> several years before I was Dx with AHI. So anyway If anyone knows

> anything about a sick liver please respond, He also tested negative

> to all Hepititis viruses.

>

> You are all in my prays

> Connie

>

[Guest guest]

I know what you mean about the posts! Posts I wrote, like my intro post, written

1-6 weeks ago, are showing up as posts written today! How weird is that?

C.

http://catherineshypohelljourney.blogspot.com/

cccquilter@...

http://www.stopthethyroidmadness.com

cccquilter53@...

Embroidery from the Heart

http://Embfromtheheart.etsy.com

[Guest guest]

Georgina - Yes - Thank you for all those posts. I will definately be

sharing some of those with Grant!

& Grant (11, PsA/Uvetiis)

>

> Georgina: Thank you for all of the inspiring posts! My daughter

had a

> terrible weekend with a flare up and this is just what she needed to

> read.

>

>

[Guest guest]

Thank you Joanne for your comments. Yes, wherever we are, we make the beauty

around us.

I cannot believe how I see things differently since I started taking the

pictures. Colors are more vibrant...the sounds of hummingbirds fighting, the

songs of birds that I have never seen before. It is amazing!

We have so much to offer here on the boards. I will give my site...

http://www.designsbydebby.com

I hope the photos are an inspiration to you all.....Peace to everyone.

Debby

[ ] Posts

I can't wait to read the posts now........I don't know what is going to be

there. It is so nice to have such a mix..medical interspersed with things about

US and our LIFE. After thinking on Harpers beautiful post I was remembering

myself before transplant. The last 6 months I felt myself dying, literally. I

had severe encephalophy and I would just lay down wherever I was. That was

usually in the forest. and I would lay there looking at everything around me and

at the heavens.wondering if I would be in heaven soon. We had a female black

bear at that time living in our area of woods........and she seemed to know I

was dying. Many a day she would sort of wander around the property near me so I

could see her. She would lay on her back and scratch her belly .and she would

sort of grunt in pleasure. I somehow always felt as if she was protecting me.

Funny. But, at the same time my poor husband was terrified he would come home

from work to find my body in parts strewn around the woods by the bear. She was

here up until this year when people training their bear dogs to track bears

scared her off. Our property is posted but she could still hear the dogs howling

so she left. This fall another bear came to live.I think it is one of her

cubs..as it is a very young one..I'd say 2 years old.So, it continues. I have no

fear of the bear here......but.I don't feed it or be stupid I still respect them

all. , Harper posted " Clearly, where ever Marelene lives is a

beautiful place, because you make it that way. " . That is so true......You

always try to be happy and you have always spread that around. You are just

plain a happy person and I have loved being your friend all these years.

People.her voice itself is also very uplifting.it SOUNDS happy. Debby. Do you

have a link for us to look at your photos? Please give it to us.would love to

see. The same goes to the rest of you.If anyone has a homepage that shows any of

your talents or joys in life we would like to see ..........As long as they are

not political or about sex., or selling vitamins etc..and good clean stuff send

it in. The story about your Dad and the snakes was great.thank you for sharing.

Svetlana, I am so happy that you now realize that there is life after liver

disease.all you need to do is take your medication.eat healthy get a bit of

exercise.and listen to your doc.always ask questions.Our motto is to always be

an informed patient. I also suggest that you ask for copies of all your blood

work and keep them in a binder at home. I have mine of many many years and I

still keep the new ones post transplant. Thursday is going to be a mad dash

first thing in the morning. At 8:30 blood labs and half an hour later I have to

be at the car dealers for car basic upkeep inspection. So.crossing fingers that

the doctors will not be behind schedule........and that I don't hit traffic. Our

crazy weather.Well, the snow is gone.it rained and blew was in the 50's then

today was again cold in the 20's and tomorrow will stay cold and snow

again..........I think the entire winter will again be like this.mostly rain and

ice. But, hoping I am wrong and can get out and go snowshoeing. This past

week-end I was not feeling good..managed to catch ! the cold thingy going

around............and what with a low immune system from cyclosporin it takes me

forever to get over something........grrrrr But, tomorrow am shopping no matter

what.need to do Christmas stuff. Well everyone...........please take care and

send in more interesting post.............. Maybe Anne V. will share some of her

crafting tips.hint, hint.are you there Anne??????????? And, still waiting for

any nice, yummy, easy, half way healthy recipes from you folks. Can be either

holiday or basic good dinners. Blessings to all, Joanne

__________________________________________________________

Save $15 on Flowers and Gifts from FTD!

Shop now at http://offers.netzero.net/TGL1241/?u=http://www.ftd.com/17007

[Guest guest]

Hi ,

That sounds like a good plan! My AS son is 10 and I also try to limit his

computer/video game time. He is pretty good about going to do other things

though, I guess he knows the drill now and he has to take breaks. Or sometimes

I have him earn extra time as a positive reward.

I too, joined the group and lurked a bit and then got busy with work and

such...I have really been trying to make the time to read (and post :-)) and

honestly it's so helpful to know we are not alone.

Take care!

Kelli

>

> I've been reading posts all morning long! And it seems like a lot of people

are going through the same things with their children as I am. My daughter is

completely addicted to her computer. But after reading all the posts, I have

come up with a schedule that will limit her to 4 hours of computer time per day

in the summer time and during school days it will limit her to only 2 hours of

computer time per day. I am hoping this plan will work and that I stick to it

and not give in to her and let her on it all day! Being the only child, I tend

to feel bad for her and give in way to easily.

> I also forgot to mention in my introduction email that my daughter also has

OCD, Anxiety Disorder, ADHD, Arthritis, and Nystagmus(an eye disorder).

>

[Guest guest]

A quick internet search with show more results for LDN TREATING depression than

CAUSING depression. Good enough for me (though I don't have the problem either

way). In the end, LDN is such a safe treatment alternative that it doesn't hurt

to try and experience (and work through)individual differences. I take many

vitamins and supplements that have never been studied in large numbers (and

never will be); yet they work for me. Others haven't. Any treatment plan is

trial and error, as we are all unique. If I waited for 'studies' I'd die first

IMHO. In the end, we all make our own choices. I'm thankful for LDN and this

group!

> >

> > Sorry to interfere in this " fight " ..Im new here...I subscribed a few weeks

> > ago,,and i would like to know if there is such " thing/problem " of depression

> > while using LDN....are there any other side effects that i should know.

> >

> >

> >

>

[Guest guest]

mattwhere did you get this informationHow can you claim to know how small or insignificant (or percentages of those afflicted) any of these side effects are when no studies exist? I think it is dangerous to claim expertise on a topic with which there is very little (and none that ive seen with large samples) research on it.you guys all understand that even in mainstream research antidotal evidence and RETROSPECTIVE studies are used. i worked at a university cancer center as a research nurse and i spent a great deal of time just following people reviewing charts measuring xrays etc. and those thing got written up in journals a retrospective study of .... whatever. the pharmacy has been keeping data for five years that has been compilled by fifth year pharmacy (pharm d doctorate) students you can email skip at askdrskip@...and if you remind me later after the coffee has kicked in i can probably find you video its in here some where - i think skip at nih and also at vanderbilthttp://web.me.com/clenz/Site/Welcome.htmlthe difference is here is that ldn is people powered and no offense to anyone. without the people here there would be no ldn. how many of us are-just here- we're the guinea pigs and we did do so willingly. huge samples have been collected so its not rumor i can assure you of thatcyndi CCyndi Lenzclenz@... (facebook)http://www.tdgr2productions.comhttp://www.goldenrescuesouthflorida.com"Is colainn gan cheann duine gan anam cara"The highest calling is to be a soul friend St Brigid On Sep 5, 2009, at 10:06 AM, matt samalin wrote: C,How can you claim to know how small or insignificant (or percentages of those afflicted) any of these side effects are when no studies exist? I think it is dangerous to claim expertise on a topic with which there is very little (and none that ive seen with large samples) research on it. Suffice to say that almost all expertise on this topic is anecdotal at best and rumors at worst. This is not to discount LDNs effectiveness in certain areas for some people, but rather to temper that "expertise" or even advice with humility and reasonable skepticism for a drug that has been woefully understudied. I really appreciate everyone's efforts and know we are ALL trying to help each other and ourselves but dissenting /concerned voices need to be heard as well, for the sake of everyone's safety. Please let me know if I am amazingly off base, and there are studies that exist to back up your claims, I sincerely would love for everything you say to be true-and am just like most people on this site very sick and in need of a miracle cure. ThanksmattOn Fri, Sep 4, 2009 at 2:31 PM, C <covomelbpc (DOT) org.au> wrote: Depression while using LDN is something which has only surfaced very recently and only affects a very small percentage of people, mainly those with certain conditions seemingly. For the majority of people LDN actually fights depression and can help wean them off antidepressants. For other side effects please read the www.low dose naltrexone.org website - that's what it's there for. xiomara velez wrote: Sorry to interfere in this "fight"..Im new here...I subscribed a few weeks ago,,and i would like to know if there is such "thing/problem" of depression while using LDN....are there any other side effects that i should know.

[Guest guest]

just one more thingi think the quote i've had the most of is thissomething like this"where can you find a drug that is Inexpensive and has virtually no side effect..."this is just in filmingcyndi CCyndi Lenzclenz@... (facebook)http://www.tdgr2productions.comhttp://www.goldenrescuesouthflorida.com"Is colainn gan cheann duine gan anam cara"The highest calling is to be a soul friend St Brigid On Sep 5, 2009, at 11:45 AM, lostalibi wrote: A quick internet search with show more results for LDN TREATING depression than CAUSING depression. Good enough for me (though I don't have the problem either way). In the end, LDN is such a safe treatment alternative that it doesn't hurt to try and experience (and work through)individual differences. I take many vitamins and supplements that have never been studied in large numbers (and never will be); yet they work for me. Others haven't. Any treatment plan is trial and error, as we are all unique. If I waited for 'studies' I'd die first IMHO. In the end, we all make our own choices. I'm thankful for LDN and this group! > > > > Sorry to interfere in this "fight"..Im new here...I subscribed a few weeks > > ago,,and i would like to know if there is such "thing/problem" of depression > > while using LDN....are there any other side effects that i should know. > > > > > > >

[Guest guest]

I agree with the gist of your post . But there is a

need to distinguish a side

effect experienced early in LDN therapy and the longer term

therapeutic effects.

LDN does both, cause depression as a temporary side effect

early on, presumably

due to blocking opiate receptors and prior to endorphin

levels being adequately

elevated and alleviate depression once the endorphin boost

has fully kicked in.

It is not uncommon for drugs to have side effects that are

similar to the effects that

they are being taken to treat.

Garnet

lostalibi wrote:

>

>

> A quick internet search with show more results for LDN TREATING

> depression than CAUSING depression. Good enough for me (though I don't

> have the problem either way). In the end, LDN is such a safe treatment

> alternative that it doesn't hurt to try and experience (and work

> through)individual differences. I take many vitamins and supplements

> that have never been studied in large numbers (and never will be); yet

> they work for me. Others haven't. Any treatment plan is trial and error,

> as we are all unique. If I waited for 'studies' I'd die first IMHO. In

> the end, we all make our own choices. I'm thankful for LDN and this group!

>

>

>

>

> > >

> > > Sorry to interfere in this " fight " ..Im new here...I subscribed a

> few weeks

> > > ago,,and i would like to know if there is such " thing/problem " of

> depression

> > > while using LDN....are there any other side effects that i should know.

> > >

> > >

> > >

> >

>

>

[Guest guest]

Matt,

I'm basing it on my almost 6 years spent reading over 80,000 posts to

the group since I joined and replying to countless of them. As I said

in my previous reply on here, the sudden upsurge in "problems"

coincides very neatly with warnings we received about big pharma

becoming concerned about the increasing success of LDN and trying to

combat that.

Cheers,

matt samalin wrote:

C,

How can you claim to know how small or insignificant (or

percentages of those afflicted) any of these side effects are when no

studies exist? I think it is dangerous to claim expertise on a topic

with which there is very little (and none that ive seen with large

samples) research on it. Suffice to say that almost all expertise on

this topic is anecdotal at best and rumors at worst. This is not to

discount LDNs effectiveness in certain areas for some people, but

rather to temper that "expertise" or even advice with humility and

reasonable skepticism for a drug that has been woefully understudied.

I really appreciate everyone's efforts and know we are ALL

trying to help each other and ourselves but dissenting /concerned

voices need to be heard as well, for the sake of everyone's safety.

Please let me know if I am amazingly off base, and there are

studies that exist to back up your claims, I sincerely would love for

everything you say to be true-and am just like most people on this site

very sick and in need of a miracle cure.

Thanks

matt

[Guest guest]

It might be a good idea to remind some doubters (and that is fine, and very

human) that many of us that have been here for years, have actually met each

other at the annual conferences. I guess it could still be considered

" anecdotal " but when you see the same people year after year and they are still

walking and talking and able to make the journey to wherever, it ceases to

become just rumour, and makes it very real.

I think I`ve said it before but we are not stupid, and I cant imagine anyone

continuing to pay, out of our pockets (some not so deep!) year after year, for

an ineffectual drug. The recommeded compounding pharmacies make more and more

LDN each year for people all over this country and we wouldnt keep going back

for more unless it was doing something good for our own particular diseases. I

for one, have better things to do with my hard earned money!

Some of us are more " direct " in our speech. I am (British!) and I suspect that

aussies also are. We are probably less " politcally correct " than American`s and

our directness may rub people the wrong way, but at the end of the day, we are

all here to help each other and we all obvioulsy want to help anyone suffering

from the hell that these diseases bring us.

We need to try to play nice with our global differences even though it`s a

challenge in itself!

Bev ( Brit in my 10th year of living amongst people that sound the same but are

different in many ways - good and bad!)

[Guest guest]

i just have to tell you all this because in the last few weeks i have been literally sitting here going thru massive amounts of videos from even before the second conference when I did that nice interview with crystal. and i wasn't at the first one. but i think things really started at the second and you can really see the progression in interest from doctors from one to the next - books written, trials started its a pretty amazing story. and i stand by what i have always said. LDN is an amazing drug but you guys are the reason its here. we're like one dysfunctional family! ahaahahahcyndiand ps i'm watching dr gilhooley from the la usc conference right now and he's just said to make sure you take omega threes with your vitamin d. and for those who did not see it here is teaser number one i'm working on number twoOn Sep 7, 2009, at 1:53 PM, cat707k wrote:It might be a good idea to remind some doubters (and that is fine, and very human) that many of us that have been here for years, have actually met each other at the annual conferences. I guess it could still be considered "anecdotal" but when you see the same people year after year and they are still walking and talking and able to make the journey to wherever, it ceases to become just rumour, and makes it very real.I think I`ve said it before but we are not stupid, and I cant imagine anyone continuing to pay, out of our pockets (some not so deep!) year after year, for an ineffectual drug. The recommeded compounding pharmacies make more and more LDN each year for people all over this country and we wouldnt keep going back for more unless it was doing something good for our own particular diseases. I for one, have better things to do with my hard earned money!Some of us are more "direct" in our speech. I am (British!) and I suspect that aussies also are. We are probably less "politcally correct" than American`s and our directness may rub people the wrong way, but at the end of the day, we are all here to help each other and we all obvioulsy want to help anyone suffering from the hell that these diseases bring us. We need to try to play nice with our global differences even though it`s a challenge in itself!Bev ( Brit in my 10th year of living amongst people that sound the same but are different in many ways - good and bad!)

[Guest guest]

and heres the linkhttp://www.youtube.com/watch?v=H2oCcFwnZqoOn Sep 7, 2009, at 6:40 PM, Cyndi Lenz wrote:i just have to tell you all this because in the last few weeks i have been literally sitting here going thru massive amounts of videos from even before the second conference when I did that nice interview with crystal. and i wasn't at the first one. but i think things really started at the second and you can really see the progression in interest from doctors from one to the next - books written, trials started its a pretty amazing story. and i stand by what i have always said. LDN is an amazing drug but you guys are the reason its here. we're like one dysfunctional family! ahaahahahcyndiand ps i'm watching dr gilhooley from the la usc conference right now and he's just said to make sure you take omega threes with your vitamin d. and for those who did not see it here is teaser number one i'm working on number twoOn Sep 7, 2009, at 1:53 PM, cat707k wrote:It might be a good idea to remind some doubters (and that is fine, and very human) that many of us that have been here for years, have actually met each other at the annual conferences. I guess it could still be considered "anecdotal" but when you see the same people year after year and they are still walking and talking and able to make the journey to wherever, it ceases to become just rumour, and makes it very real.I think I`ve said it before but we are not stupid, and I cant imagine anyone continuing to pay, out of our pockets (some not so deep!) year after year, for an ineffectual drug. The recommeded compounding pharmacies make more and more LDN each year for people all over this country and we wouldnt keep going back for more unless it was doing something good for our own particular diseases. I for one, have better things to do with my hard earned money!Some of us are more "direct" in our speech. I am (British!) and I suspect that aussies also are. We are probably less "politcally correct" than American`s and our directness may rub people the wrong way, but at the end of the day, we are all here to help each other and we all obvioulsy want to help anyone suffering from the hell that these diseases bring us. We need to try to play nice with our global differences even though it`s a challenge in itself!Bev ( Brit in my 10th year of living amongst people that sound the same but are different in many ways - good and bad!)

[Guest guest]

This is brilliant. Thanks for making it

and sharing it. So much is packed into a few minutes.I feel inspired.

Nuala

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Cyndi Lenz

Sent: 07 September 2009 23:43

Cyndi Lenz

Cc: cat707k;

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: posts

and heres

the link

On Sep 7, 2009, at 6:40 PM, Cyndi Lenz wrote:

i just have to tell you

all this because in the last few weeks i have been literally sitting here going

thru massive amounts of videos from even before the

second conference when I did that nice interview with crystal.

and i wasn't at the first one. but i think things really started at the

second and you can really see the progression in interest from doctors from one

to the next - books written, trials started its a pretty amazing story.

and

i stand by what i have always said. LDN is an amazing drug but you guys are the

reason its here. we're like one dysfunctional family! ahaahahah

cyndi

and

ps i'm watching dr gilhooley from the la usc conference right now and

he's just said to make sure you take omega threes with your vitamin d.

and

for those who did not see it here is teaser number one i'm working on number

two

On

Sep 7, 2009, at 1:53 PM, cat707k wrote:

It

might be a good idea to remind some doubters (and that is fine, and very human)

that many of us that have been here for years, have actually met each other at

the annual conferences. I guess it could still be considered

" anecdotal " but when you see the same people year after year and they

are still walking and talking and able to make the journey to wherever, it

ceases to become just rumour, and makes it very real.

I think I`ve said it before but we are not stupid, and I cant imagine anyone

continuing to pay, out of our pockets (some not so deep!) year after year, for

an ineffectual drug. The recommeded compounding pharmacies make more and more

LDN each year for people all over this country and we wouldnt keep going back

for more unless it was doing something good for our own particular diseases. I

for one, have better things to do with my hard earned money!

Some of us are more " direct " in our speech. I am (British!) and I

suspect that aussies also are. We are probably less " politcally

correct " than American`s and our directness may rub people the wrong way,

but at the end of the day, we are all here to help each other and we all

obvioulsy want to help anyone suffering from the hell that these diseases bring

us.

We need to try to play nice with our global differences even though it`s a

challenge in itself!

Bev ( Brit in my 10th year of living amongst people that sound the same but are

different in many ways - good and bad!)

[Guest guest]

thanks so much. I sit here and get inspired by you guys and all the video I've shot-its very much an honor. i spent most of the weekend going thru video and its quite an amazing story. cyndiOn Sep 8, 2009, at 5:12 AM, Nuala White wrote:This is brilliant. Thanks for making it and sharing it. So much is packed into a few minutes.I feel inspired.Nuala From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Cyndi LenzSent: 07 September 2009 23:43Cyndi LenzCc: cat707k; low dose naltrexone Subject: Re: [low dose naltrexone] Re: posts and heres the linkhttp://www.youtube.com/watch?v=H2oCcFwnZqoOn Sep 7, 2009, at 6:40 PM, Cyndi Lenz wrote:i just have to tell you all this because in the last few weeks i have been literally sitting here going thru massive amounts of videos from even before the second conference when I did that nice interview with crystal. and i wasn't at the first one. but i think things really started at the second and you can really see the progression in interest from doctors from one to the next - books written, trials started its a pretty amazing story. and i stand by what i have always said. LDN is an amazing drug but you guys are the reason its here. we're like one dysfunctional family! ahaahahahcyndiand ps i'm watching dr gilhooley from the la usc conference right now and he's just said to make sure you take omega threes with your vitamin d. and for those who did not see it here is teaser number one i'm working on number two On Sep 7, 2009, at 1:53 PM, cat707k wrote:It might be a good idea to remind some doubters (and that is fine, and very human) that many of us that have been here for years, have actually met each other at the annual conferences. I guess it could still be considered "anecdotal" but when you see the same people year after year and they are still walking and talking and able to make the journey to wherever, it ceases to become just rumour, and makes it very real.I think I`ve said it before but we are not stupid, and I cant imagine anyone continuing to pay, out of our pockets (some not so deep!) year after year, for an ineffectual drug. The recommeded compounding pharmacies make more and more LDN each year for people all over this country and we wouldnt keep going back for more unless it was doing something good for our own particular diseases. I for one, have better things to do with my hard earned money!Some of us are more "direct" in our speech. I am (British!) and I suspect that aussies also are. We are probably less "politcally correct" than American`s and our directness may rub people the wrong way, but at the end of the day, we are all here to help each other and we all obvioulsy want to help anyone suffering from the hell that these diseases bring us. We need to try to play nice with our global differences even though it`s a challenge in itself!Bev ( Brit in my 10th year of living amongst people that sound the same but are different in many ways - good and bad!)

[Guest guest]

> I feel as if it is only Kay and I here...............

im here. I dont post as I dont really have anything to say, live alone, seldom

get out and dont really see anyone. This situation is because of other things

not liver. Anyway, just wanted to elt you know you are not alone and thankyou

for the group

Carole from Wales UK

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[Guest guest]

Don't feel lonely--I always read the posts--just don't have much to add. But, I

will say that I had my blood labs done yesterday and I'm holding steady at 19

ALT and 27 AST. I've had AIH since March, 2008. Don't have to go back to the

hepatologist for one year. However, I have a bunch of tests and procedures

scheduled just to make sure everything is OK--endoscopy to check for variaces of

the liver, MRI of the liver, dexascan to check my bones, etc. I am nearing the

end of my prednisone wean. I am on 3 mg of Prednisone and 75 of Imuran. By

December, God willing, I will be off Prednisone. Docs say I'll probably be on

Imuran the rest of my life. I don't like that, but it's better than dying of

liver failure.

I guess my advice to all the newbies out there is to find a hepatologist who

sees these things a lot. Your local GI doc doesn't-- because AIH is rare. Same

with your liver biopsy--most pathologists don't see a lot of livers like ours. I

had mine done locally, but also sent the slides to my hepatologist (in another

city about 2.5 hours from me) so that his pathology people could see them.Other

advice: take care of your liver--just about everything you swallow is going

through it. Your liver doesn't " regenerate " like you always hear. It will never

be good as new, so don't take any chances.

Patsy in Tennessee

>

> I feel as if it is only Kay and I here...............is not anyone going to

> post and discuss anything?>

[Guest guest]

Hi I read your post, my 31 yr old son was diagnosed in May. It's been a

rough summer for him and his family. He is finally down to 20 milgs of

Prednisone. He looks awful is carrying alot of fluid, but he is feeling

better than a month ago when he was still on a high dose of 40mlgs. He

started at 60 mlgs from may til end of july. He had an MRI the end of

july and he has cirhosis. He was evaluated at a transplant center and

his MELD score was 11. Does any of this sound familiar. We are looking

for some hope that his quality of life will improve, because for 3 mos

there has been very little of that, tho the last three weeks have given

all of us some hope. Thanks Matts MOM Marilyn

> >

> > I feel as if it is only Kay and I here...............is not anyone

going to

> > post and discuss anything?>

>

[Guest guest]

I'm not putting post between Jeanine, Robin and Tug through since we have so

many posts and need to spend the time on helpful things.