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Yeah, if I was 149, I'd consider myself skinny! By the way, Susie, we also have another Suzie with a Z.

De

Faith is the ability to not panic.

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ] On Behalf Of Kathy brunowSent: Saturday, June 11, 2005 5:22 PMHepatitis CSupportGroupForDummies Subject: Re: Hi, I'm new...

You consider 149 overweight!!! Dang girl your just fine at that weight..Argh!! I'm a moose... Oh I am Kathy B in Milwaukee..

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Thank you, Allan, for your email. I appreciate it. Because I quit going to the doctor after my liver biopsy, I don't know where I'm at in this. I know I will have to be honest with my family sometime - but, I'm not there yet.

With everyone's help, I hope to someday.

Susie

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This could work out..But you might have to beat him up first.. But no seriously..Keep your door locked and set down some rules..I speck as the mother of daughters who "go shopping" in my pantry!!I starting getting a bag of stuff (food, light bulbs etc..)ready before they got here.. They where sooo shocked..They stopped..Still get the grands quite a bit..But at least I am getting some kind of warning first now!! A day or a few hours helps..Kathy Boo...ps he sounds like a real winner.. boo

-- Re: Hi, I'm new...

Kathy B - I'll probably end up telling him worse than that. He and his 6 yr old daughter are moving next door soon. We only have them now every other weekend for his ex-wife's supervised visit's. His mouth is going to get him in trouble.

Susie

Letter by Undeniable Designs

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Hi Suzie with a z - I'm happy to meet you . I love your and Kathy B's sense of humor and am looking forward to a lot more of it. I'm so glad I found you.

I'll be out of town until Thursday night and will miss you guy's.

My brother is an insensitive clod - I always wanted to trade 3 sorry brother's for one good sister. But, he has his good point's, too.

Anyway, nice to meet you.

Susie

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Suzie - I won't try to steal your sister's. My family would drive them crazy anyway. I enjoyed reading about your brother's religion - I learned a lot I never knew.

My relationship with my brother's was never an easy one. I don't know how two such wonderful people as my parent's could have such lousy children, but that's the way it goes sometime's. We lost my oldest brother over a year ago to Hepatitis C. He died at the VA hospital in Dallas and I don't even want to talk about that terrible hospital. It was recently given the worst rating of any hospital in the country. With good reason, I believe.

He is the main reason I can't yet tell my family about my own diagnosis.

The support here is great.

Susie

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  • 11 months later...
Guest guest

>

> I'm new to your group, it looks great, I look forward to meeting you

> all through our mails and to post interesting topics from time to

> time,

> blessings,

>

>

Hi ,

Welcome to the board! Feel free to jump in any time. We're a warm and

fuzzy bunch around here :o)

-Jef

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  • 4 months later...

>

> Hi Everyone, I'm new to this group. I have PLS and I've been

hearing some good positives about LDN. I'm going to my neurologist on

Monday and hope he'll agree to let me try it. Any information from

the group, such as dosage, availability, etc. would really be

helpful. I now take baclofen (30 mg a day) and don't feel that it

does much. If I increase the dosage, it makes me too drowsy. I'm

ready for a new direction.

> Cira in Phoenix, Az.

>

============

Not sure how much these files will help someone with PLS get LDN, the

one about how to talk to your doc should help. Ask that your fist

script be in 1.5mg capsules so you can start slow and gadually

increase your dose.

Files for newbies to present to your doc for LDN prescription.

http://gazorpa.com/DoctorFolder.html

How To Talk to Your Doctor About LDN

http://gazorpa.com/PatientGuide.html

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Hi Cira,

I have PLS too, as do a few others on here and I definitely recommend

trying LDN. Give it at least 9 months even if you don't feel it is

working, though if that happens let us know as there are a number of

reasons why it may not work eg. getting it from a non-recommended

pharmacy, problems with filler, candida etc.. People on here are very

good at trying to help others for whom it doesn't seem to be working.

If you haven't already done so then absolutely the next thing to do is

fully read and try to digest the information on

www.low dose naltrexone.org (not .com)! That should give you the info you

need. Having said that I'll give you a bit of a head start (some may

not agree with all I say but they are welcome to add their own

perspective).

Basically the optimum dose is 4.5mg per day IF you can handle it without

ongoing insomnia or stiffness (some people experience one or both for a

few days as the body gets used to the LDN but it usually disappears

after a few days or week or two). However, some people (apparently men

more than women) can't tolerate 4.5mg so should aim for 3.0mg at least

as supposedly the minimum recommended to stop disease progression. It

is a good idea to get your first lot of LDN made up as 1.5mg capsules

until you know whether you can take 4.5mg or not, because taking 2

capsules gives you 3.0mg per day (the dosage most people start with) and

then you can step up to 3 capsules (4.5mg) if 3.0mg is OK.

In a " Chinese whispers " scenario some people then began starting with

only 1 capsule (1.5mg). The jury is out on that one as some people

think it is a good way to let the body slowly acclimatize, whereas

others wonder whether starting at 1.5mg is a good idea as it seems some

people who do that can't even handle the jump up to 3.0mg. It's almost

as though with some people once the body gets used to any amount of LDN

it can't handle an increase in dosage. That is purely an observation,

not a fact!

Good luck! :-)

PS Have you joined PLS-FRIENDS?

ciracole@... wrote:

> Hi Everyone, I'm new to this group. I have PLS and I've been hearing

> some good positives about LDN. I'm going to my neurologist on Monday

> and hope he'll agree to let me try it. Any information from the

> group, such as dosage, availability, etc. would really be helpful. I

> now take baclofen (30 mg a day) and don't feel that it does much. If

> I increase the dosage, it makes me too drowsy. I'm ready for a new

> direction.

> Cira in Phoenix, Az.

>

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  • 2 years later...
Guest guest

Hello, my name is and I am looking for some friends who are dealing with

pdd in their child or similar.

My son is 10 and will be getting assessed/evaluated this year. He's an amazing

person and I can't wait to know more about him this summer.

He was a late talker, has sensory issues and creative social ideas sometimes

(kwim?) He is an amazing pianist and friend...beautiful son.

We have 4 sons and live in Washington State. We're homeschoolers.

I am curious if any one here has had allergy testing done for their special

needs child? I wonder could you offer us any advice for helping your child cope

with the needles? The lady on the phone didn't have a clue to what I was

talking about, and maybe to her a small prick with a needle in 'just the

surface' of the skin isn't a big deal to her, but...

I told her it could go either way and to please make a note.

I am so glad I am having him assessed this year, just so I can talk with

doctors and dentists, family better.

Ok, sort of long. Thank you for having me.

shan

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