help...

[Guest guest]

Hi...message #547 will lead you to Shomon's

thyroid articles on the web, but I haven't read the book

you're asking about. It's great that you're aware of the

symptoms. Once you're diagnosed and begin treatment, you'll

probably feel like a brand new person. :-)

[Guest guest]

… I don’t know anything about the myelin sheeth being affected by DM…

I think you should ask to be re-tested, also ask this doctor – with results

of 3100, what would you typically be feeling, what would symptoms be, etc.?

Does he suspect something other than DM? This seems very odd and suspicious

to me… I know there are mix ups and all kinds of crazy things that can

happen. Just better to get this retested and also get more info from him…

Are there any medications that would cause this? Specific illnesses or

autoimmune disorders that this is a symptom of? Any family history?

I am confused… did the nurse practitioner think that 3100 was normal? I

think you need to just get some questions answered… seems like a mix up to

me.

I am glad that you are feeling better, that is a great thing!

Liesl

Message: 6

Date: Tue, 24 Feb 2004 14:23:32 -0000

From: " Nicometo " <dellatigre2@...>

Subject: help

hi everyone....i want to start out saying that i am doing better and

better. i have dermatomyositis. my AP doc tested me for anti-MAG

antibodies in December and he just called me with the results

yesterday. this antibody measures antibody production against the

myelin sheeth. my test was the hghest he has ever seen....3100. he

wants to start a program of rebuilding the myelin (B12 injections

etc.). the problem is...i called the neurology clinic and the nurse

practioner said i shouldnt even be tested for that i have no sign of

neuropathy and she thought that range was normal. so i am VERY

confused. and before i start rebuilding my myelin (time and money) i

want to know what is going on. i am working with the idea i have

inflammed muscles. that is a little different than nerve damage.

anyway....if anyone can shed even a small amount of light on this

confusing test i would appreciate it. i have had a headache since my

AP doc called me yesterday. i have tried finding things online with

no success. thank you everyone.

rachael

Liesl (Lee) Dutro, Marketing Coordinator

hci

7011 Campus Drive, Suite 200

Colorado Springs, CO 80920

Visit our website at www.hciusa.com

[Guest guest]

Hi Dena,

It sounds like your friend's husband is in a bad state of denial.

You haven't mentioned where you or you friends live. Have your

friend look for a local support group. Hepatitis Magazine, HCV

Advocate, National Hepatitis Collation, Hepatitis Foundation

International and LeighAnn's Hepatitis C Home all have lists of

support groups by state. (There are more but I can't remember them

tonight). She can get a lot of help in a short time at a meeting.

I'm sure he won't go but she can learn how to reason with him and

how to help him.

Welcome to the group, Dena. Hope you and your friend can find

answers here.

Glenn

>

> Hi,

> I just joined today and so I'm new here. I have a friend and her

> husband has Hep. C; she doesn't have it. It's strange how it

> happened. He got it in his 20's and for some reason is seemed

> to go in remission or something. For 30 years he seemed

> unaffected but now he is in his 50's and it has been damaging

> his liver all along. He has been kicked around to many doctors.

> He has even tried the 'treatment' which he is allergic to, so the

> doctors have said never take it again, it could kill him. The

> doctors have all recommended anti-depressants, but he is a

> manly man and so refuses to take them. My friend is having a

> hard time dealing with her husband and I am trying to help her.

> Last Friday they went to see another specialist. I asked this

> morning and my friend couldn't talk without tears so I asked a

> co-worker and this is what is happening...They ranked his liver

> as an 11 on a scale from 1-40. Good news, right ? I thought so

> but apparantly his liver is not functioning right because a build

up

> of ammonia (sp?) is going to his brain. He is not his right

> self...and he was told he needed to see a psychiatrist...which he

> refuses(manly man again)...he was also given a prescription for

> a drug which will cause him to go to the bathroom regularly in

> hopes of flushing the ammonia out of his system...whether or

> not he takes this med. remains to be seen.

>

> Ok, here is my question...What is she to do...he won't take his

> meds., he won't talk with the psych. doctor., and he scares

> her...he throws things and he talks crazy about his family whom

> he loves but states he cares nothing for any of them. How do

> you deal with someone going through this...how do you live with

> him...she loves him dearly and couldn't leave him....which might

> be the best thing...suicide took his brother and with his

> diminished abilities to think might even do the same. Everyone

> at work is scared for her and many have said to leave him if he

> refuses to help himself...I don't want her to get hurt so what do

I

> say to her. I can't imaging what she must be feeling inside.

>

> Thanks for any help....

>

> Dena

[Guest guest]

Dena,

You are a wonderful friend to have, and we are glad you've joined us

to get information. Yes, to repeat hdhepper, your friend's manly

man is in serious denial.

From what you say about his health, he is a typical example of

hepatitis C progression. It takes many of us thirty plus years to

begin showing symptoms, even though the liver is being affected all

along. The disease is not in remission, but this is how it manifests

itself.

It sounds like he has given up emotionally. It is very important

for your friend to get support for herself. Perhaps, after she

becomes more educated as to why he does what he is doing, she can

gently educate him.

The ammonia going to his brain is called 'encephalopathy'--in the

old AA meetings they called it 'wet brain'--and I do hope that he is

not drinking alcohol anymore...alcohol and hepC are lethal together.

He needs to realize that his uncontrolled behavior, which can be

controlled by the antidepressants, is a symptom of his liver

disease. It is not somehow HIS fault!

When the liver no longer cleans the toxins from our blood, mental

health also deteriorates. There are many ways for him to live a

long, relatively healthy life without today's treatments. Lifestyle

changes, nutrition, exercise--all of these factor in. Being stress-

free is one of the most important factors for maintaining a healthy

lifestyle; therefore, somehow, he needs to accept his behavior as

part of his disease and as treatable!

I hope this helps, Dena.

Suzy

>

> Hi,

> I just joined today and so I'm new here. I have a friend and her

> husband has Hep. C; she doesn't have it. It's strange how it

> happened. He got it in his 20's and for some reason is seemed

> to go in remission or something. For 30 years he seemed

> unaffected but now he is in his 50's and it has been damaging

> his liver all along. He has been kicked around to many doctors.

> He has even tried the 'treatment' which he is allergic to, so the

> doctors have said never take it again, it could kill him. The

> doctors have all recommended anti-depressants, but he is a

> manly man and so refuses to take them. My friend is having a

> hard time dealing with her husband and I am trying to help her.

> Last Friday they went to see another specialist. I asked this

> morning and my friend couldn't talk without tears so I asked a

> co-worker and this is what is happening...They ranked his liver

> as an 11 on a scale from 1-40. Good news, right ? I thought so

> but apparantly his liver is not functioning right because a build

up

> of ammonia (sp?) is going to his brain. He is not his right

> self...and he was told he needed to see a psychiatrist...which he

> refuses(manly man again)...he was also given a prescription for

> a drug which will cause him to go to the bathroom regularly in

> hopes of flushing the ammonia out of his system...whether or

> not he takes this med. remains to be seen.

>

> Ok, here is my question...What is she to do...he won't take his

> meds., he won't talk with the psych. doctor., and he scares

> her...he throws things and he talks crazy about his family whom

> he loves but states he cares nothing for any of them. How do

> you deal with someone going through this...how do you live with

> him...she loves him dearly and couldn't leave him....which might

> be the best thing...suicide took his brother and with his

> diminished abilities to think might even do the same. Everyone

> at work is scared for her and many have said to leave him if he

> refuses to help himself...I don't want her to get hurt so what do

I

> say to her. I can't imaging what she must be feeling inside.

>

> Thanks for any help....

>

> Dena

[Guest guest]

> Hi Dena,

> It sounds like your friend's husband is in a bad state of denial.

> You haven't mentioned where you or you friends live. Have

your

> friend look for a local support group. Hepatitis Magazine, HCV

> Advocate, National Hepatitis Collation, Hepatitis Foundation

> International and LeighAnn's Hepatitis C Home all have lists of

> support groups by state. (There are more but I can't remember

them

> tonight). She can get a lot of help in a short time at a meeting.

> I'm sure he won't go but she can learn how to reason with him

and

> how to help him.

> Welcome to the group, Dena. Hope you and your friend can

find

> answers here.

> Glenn

Hi Glenn,

Thanks for the reply. We all live in Arkansas. LOL, usually when

I tell people where I live they seem disappointed. I know he

won't seek a support group and she won't go without him so I

will stay here for them. She still goes to church and gains

support from friends there and at work. He doesn't go to church

like he used to either. I think he is mad at God and also very

weak physically. I'm 33, she is in her 40's, and he is in his 50's

and from that era. He got Hep C. from his youth from an old

girlfriend (drugs) but he straightened out soon after that and has

never done drugs or alcohol since. One of the doctors accused

him of alcohol consumption and told him to quit...he was pissed

off because he doesn't drink. He has seen so many doctors

and they have contridicted each other...so he is fed up with

doctors. He doesn't know who to believe...They sent him to pain

management and nothing was done...he hurts and just wants

relief like most. They sent him to gastroenterology and he is

forever scarred emotionally from that. He said he'd NEVER go

there again. They did a colonoscopy, well, actually they did two

and went in from both ends...a lot of pain to endure to find

nothing.

On the plus side, my friend said he didn't take the medicine to

flush out the ammonia yesterday but he said he'd try it today. I

guess there is initial shock and settling each time he sees a

doctor or gets a new percription. They psych. doctor is still not a

topic of discussion from what I hear. I had it wrong, the drug is

not flushing urine. It will make him have 3 bowel movements a

day and he has had bad experiences before with controlling that,

luckily nobody was around to see it but it affected him mentally.

Dena

[Guest guest]

Hi Suzy,

Thanks for the welcome. She has helped me so much and I

love her and hate to see her hurt for him. Sometime at work she

cries and my heart just breaks for her. I've heard of

encephalopathy before. I'm in college studying Health

Information Management. I was looking under the wrong term, I

was looking for info. under hyperammoniemia but that must be a

different thing. I'll look up encephalopathy. Thanks. I think he is

beginning to give up also even though she swears he fights

daily. Maybe physically he does fight, but the mental is a different

story. He is in his shop all the time overdoing it and then the next

day he is in bed all day. He is a mechanic and if he can't do that

anymore he...well, you know guys, they always have to be up

moving around doing something or they feel useless ????

Is his mind he is in denial and is attempting to tell himself that

the doctors don't know anything (some truth to that) and that he

is " just fine " .

Anyway, I hope things smooth out, maybe his dad can talk him

into taking the med. that will help him...

If anyone hears or knows of any treatments that don't involve

interferon...let me know...they have to start working on that as

well for the people who are allergic to it.

Dena

[Guest guest]

Thanks for the reply. We all live in Arkansas. LOL, usually when

> I tell people where I live they seem disappointed.

.......................................................................

Hey Dena, Kos here, I lived in Fort for 18 years and in Mena

for 2 years. I love AR! Just don't love their politics and policys.

May i ask where you are there? I get so homesick sometimes. I have

only got to go back once since i got sick. It is beautiful there and

i miss it. I hope you feel better knowing there is a fellow ridge

runner here. Wishing your friend the best...........Kos

[Guest guest]

Kos,

There is a very active hepper in Arkansas who goes by 'Antique

'. He's on several boards.

>

> Thanks for the reply. We all live in Arkansas. LOL, usually when

> > I tell people where I live they seem disappointed.

> ....................................................................

...

> Hey Dena, Kos here, I lived in Fort for 18 years and in Mena

> for 2 years. I love AR! Just don't love their politics and policys.

>

> May i ask where you are there? I get so homesick sometimes. I have

> only got to go back once since i got sick. It is beautiful there

and

> i miss it. I hope you feel better knowing there is a fellow ridge

> runner here. Wishing your friend the best...........Kos

[Guest guest]

Tricia:

I can't speak to the first options but I did have an ankle fusion when I was

young (10 I

think). My case was different I had polio in my right leg. My foot started

rolling under

because there was no muscle support. The doctor fused my ankle so I could walk

with my

feet flat on the ground. This was in the late fifties and I know the technology

has probably

improved.

The result was good and I have had no problems with it after almost 45 years. I

can't give

you any advice on which on of the options are better than the other. Just

wanted to let

you know that fusion is not a bad thing if all else fails. You will still be

able to get around

but will probably need to teach yourself a different way of using you ankle and

foot. The

body and brain have a very neat way of accommodating limitations.

Don

>

> Hi everyone,

>

> My name is Tricia and I am 59 years old in good health. In June

> 2004 I had a total ankle replacement with the Agility ankle system.

[Guest guest]

Ive heard mostly of using echinacea and Reishi and other mushroom extracts ( the

latter I have tried for myself and Evan, age 16 with mixed results)...the

Samento you mention is a form of Cats claw...with certain of the alkaloids

removed. Ive found no studies showing that either the original extract or the

altered version having real effect upon immune system function. Herbs (like

" drugs " ) affect everyone differently and have the potential to have side

effects/allergies.

proceed with caution and as always, if it works for you...and your doctor doesnt

object on medical reasoning grounds, then use it. Be aware that so far there are

no magic cure alls...if there were we would ALL be running to the nearest

supermarket and loading our carts with Vit c/salt or to the nearest vitamin/herb

stores or wherever that cure-all is!!

re: Dr.

credentials:http://www.physicians.dph.state.ct.us/web_public/web_public.show

if the link is faulty, go instead to :http://www.dph.state.ct.us/ and click on

physician profiles on left.

click again on physician profile and type in and and click query

at very top under " report " click profile and you will see the public record.

I dont understand how this will help you...a person's experience and ability to

properly treat Lyme goes way beyond licensing!! there are NO listings for ANY

" Lyme expert " let alone world leading in peds Lyme. This is a word of mouth

knowledge base. the fact that there are NO classifications is what makes these

poor professionals targets...as Ive said no one would allow cardiologists to be

persecuted for treating too many heart patients...yet LLMDs face this and other

insults. this is a reputational assessment. Perhaps you can explain this to your

Dr???

Dr IS a licensed and experienced pediatrician...all the credentials he

needs...plus located in the geographical area where Lyme was first typified, and

seeing so many patients ( Im sure his office can disclose his patient loads,

over the many years but they probably wont or cant say how many are/were Lymies)

and so many with tick illness...it makes sense that he has seen enough and

treated enough numbers to be an " expert " .

that is as much an expert as he can be given the current state of Lyme

treatment/varying info.

For info on any Dr: if you google the state medical licensing board or dept of

health physician listings, there often is a way to search about any Dr. also you

may try searching in the database kept by the hospital theyre affiliated with.

good luck

[ ] Help...

Hello everybody....

Was wondering how one would find out a doctors credentials? I need to

prove to the doctor here in NS Canada, that Dr. J from New haven Ct is

a world leading pediatric specialist on Lyme Disease. I need as much

support and information as possible. And has anyone ever heard of

children using Samento for Lyme Disease?Thank you....

T

The book, Confronting Lyme Disease: What Patient Stories Teach Us is now

available through Amazon and Booksurge Bookstores. Please visit the

official website at http://www.confrontinglyme.com for more information.

[Guest guest]

I think I did a big mistake. I confused my Atomodine bottle with my B12 and took a dropper full of it instead of one drop. what do I do?

Helen

[Guest guest]

In a message dated 11/18/2006 3:53:44 P.M. Eastern Standard Time, ladybugsandbees@... writes:

You should be fine. Just don't take any tomorrow. As Dr. B says and believes that Japanese take more than you got in that dropper full.

Thank you,,,,I have no reaction.

[Guest guest]

You should be fine. Just don't take any tomorrow. As Dr. B says and believes that Japanese take more than you got in that dropper full.

Re: Re: Help...

I think I did a big mistake. I confused my Atomodine bottle with my B12 and took a dropper full of it instead of one drop. what do I do?

Helen

[Guest guest]

Helen,How much iodine is in one drop of the Atomodine?  Do you have any clue how many drops are in one dropper full?LinnOn Nov 18, 2006, at 12:54 PM, heltrim1@... wrote:I think I did a big mistake.  I confused my Atomodine bottle with my B12  and took a dropper full of it instead of one drop.  what do I do? Helen

[Guest guest]

Then you should be OK. You would have reacted by now.

Re: Re: Help...

In a message dated 11/18/2006 3:53:44 P.M. Eastern Standard Time, ladybugsandbeessbcglobal (DOT) net writes:

You should be fine. Just don't take any tomorrow. As Dr. B says and believes that Japanese take more than you got in that dropper full.

Thank you,,,,I have no reaction.

[Guest guest]

In a message dated 3/6/08 6:54:24 PM Eastern Standard Time,

gemini_0306@... writes:

> any advice will be appreciated

The very first move she should make is to get herself on Low Dose Naltrexone.

It helps stop the spread of colon cancer.

**************

It's Tax Time! Get

tips, forms, and advice on AOL Money & amp; Finance.

(http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

In a message dated 3/6/08 8:43:29 PM Eastern Standard Time, Ciro291@...

writes:

> If your friend is a U.S citizen & with no health insuranse.

> She will be eligible for medicaid coverage.

>

Schachter doesn't take medicaid...he used to take regular health insurance

but it doesn't cover a lot of the testing and treatment. I like Schachter..he's

quite good but wouldn't your friend do better trying treatment in Mexico?

**************

It's Tax Time! Get tips, forms, and advice on AOL Money & amp; Finance.

(http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

In a message dated 3/6/08 9:11:15 PM Eastern Standard Time,

jcastron1@... writes:

> Additionally, if one were to work through , Director of The Center

> For The Study Of Natural Oncology and a member of this list'

That would be my choice.

**************

It's Tax Time! Get tips, forms, and

advice on AOL Money & amp; Finance.

(http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Hi Patti,

May I suggest Low Dose Naltrexone. To learn more, visit

http://tinyurl.com/2p57xv

Sincerely,

Dudley Delany

dudley_delany

help...

a 40 year old friend of mine was diagnosed with stage 4 bowel cancer, mets to

the liver - she immediately started going to a naturopath, changed her eating

habits and also took chemo - 6 months into this and things aren't looking good -

she went to new york last week for a combo chemo/insulin treatment, at a private

clinic - her eyes turned yellow and her feet started to swell so she came home

to Canada not wanting to be hospitalized in the U.S. with no insurance....

is there anything at all at this stage we can do to help her....

any advice will be appreciated - her docs are telling her nothing conventional

will help now, one oncologist is even looking for help in Germany....

thanks

Patti'tough times don't last - tough people do'

_________________________________________________________________

[Guest guest]

>

>

> a 40 year old friend of mine was diagnosed with stage 4 bowel

cancer, mets to the liver - she immediately started going to a

naturopath, changed her eating habits and also took chemo - 6 months

into this and things aren't looking good - she went to new york last

week for a combo chemo/insulin treatment, at a private clinic - her

eyes turned yellow and her feet started to swell so she came home to

Canada not wanting to be hospitalized in the U.S. with no

insurance....

> is there anything at all at this stage we can do to help her....

> any advice will be appreciated - her docs are telling her nothing

conventional will help now, one oncologist is even looking for help

in Germany....

>

> thanks

> Patti'tough times don't last - tough people do'

> _________________________________________________________________

>

>

>

>

[Guest guest]

If one is thinking Mexico for a clinic then they need to be thinking The

SanDiego Clinic right across the border from SanDiego and mentioned many times

by Leonard who has quite a lot of information on Mexican clinics.

Additionally, if one were to work through , Director of The Center For

The Study Of Natural Oncology and a member of this list' they would most likely

get a better deal.

Joe C.

[Guest guest]

>

> In a message dated 3/6/08 8:43:29 PM Eastern Standard Time,

Ciro291@...

> writes:

>

>

> > If your friend is a U.S citizen & with no health insuranse.

> > She will be eligible for medicaid coverage.

> >

>

> Schachter doesn't take medicaid...he used to take regular health

insurance

> but it doesn't cover a lot of the testing and treatment. I like

Schachter..he's

> quite good but wouldn't your friend do better trying treatment in

Mexico?

>

>

>

>

>

From what I read. I assume that the lady has no health insurance

because she cannot afford to pay for it.

A Hospital such as Oasis of Hope in Mexico charges between $25,00 to

$30,000 for a 3 week stay for medical tretments.

They could be contacted by calling:

1-888-500-4673

For the Schachter Medical Center (which is on the East Coast)

in the U.S.

She should call:

Anita (New Patient Services) at:

1-845-368-4700

Perhap's she may be able to be of help.

[Guest guest]

i know a few doctors in mexico. I took my son there in

1991 and have helped others. my son had terminal brain

cancer has been cancer free since 1992 all natural

treatment. please email me privately

jennyhauf@... or call me at 269.876.8475 i am on

EST.

--- Ciro' <Ciro291@...> wrote:

>

> >

> > In a message dated 3/6/08 8:43:29 PM Eastern

> Standard Time,

> Ciro291@...

> > writes:

> >

> >

> > > If your friend is a U.S citizen & with no health

> insuranse.

> > > She will be eligible for medicaid coverage.

> > >

> >

> > Schachter doesn't take medicaid...he used to take

> regular health

> insurance

> > but it doesn't cover a lot of the testing and

> treatment. I like

> Schachter..he's

> > quite good but wouldn't your friend do better

> trying treatment in

> Mexico?

> >

> >

> >

> >

> >

>

> From what I read. I assume that the lady has no

> health insurance

> because she cannot afford to pay for it.

> A Hospital such as Oasis of Hope in Mexico charges

> between $25,00 to

> $30,000 for a 3 week stay for medical tretments.

> They could be contacted by calling:

> 1-888-500-4673

>

> For the Schachter Medical Center (which is on the

> East Coast)

> in the U.S.

> She should call:

>

> Anita (New Patient Services) at:

> 1-845-368-4700

>

>

> Perhap's she may be able to be of help.

>

>

>

Immature love is loving someone because you need them, mature love is needing

someone because you love them!

[Guest guest]

Thanks it's to late for my Mother but maybe you have helped someone else

JCastron <jcastron1@...> wrote: If one is thinking Mexico for a

clinic then they need to be thinking The SanDiego Clinic right across the border

from SanDiego and mentioned many times by Leonard who has quite a lot of

information on Mexican clinics. Additionally, if one were to work through

, Director of The Center For The Study Of Natural Oncology and a member

of this list' they would most likely get a better deal.

Joe C.

[Guest guest]

I agree wholeheartedly. I had in mind when I

posted my comments.

--- Ethel ez <rnemarty@...> wrote:

> Thanks it's to late for my Mother but maybe you have

> helped someone else

>

> JCastron <jcastron1@...> wrote: If

> one is thinking Mexico for a clinic then they need

> to be thinking The SanDiego Clinic right across the

> border from SanDiego and mentioned many times by

> Leonard who has quite a lot of information on

> Mexican clinics. Additionally, if one were to work

> through , Director of The Center For The

> Study Of Natural Oncology and a member of this list'

> they would most likely get a better deal.

>

> Joe C.

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

> Ethel

>

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

> Looking for last minute shopping deals? Find them

> fast with Search.

>

> [Non-text portions of this message have been

> removed]

>

>

Immature love is loving someone because you need them, mature love is needing

someone because you love them!