Re: my mother

[Guest guest]

Check out the website I have on Immunocal. Its a all natural product with no

side effects. It has an anticancer patent. This is a method of use patent ,

which means they had to do enough research to prove it does what it says.

Debbie is in this group as well and she has had positive results as well as

myself. It is great in the lung area and Dr. Larry Lands who is a respitory

therapist has done much research on the lungs and Immunocal. Please check

this website out: www.immune-response.net/go/cindy

I will also try to send the website to you. If your email works. Celine

Dion's husband has been using Immunocal and his cancer is gone now.

Immunotec Research who is the co. making the Immunocal has a research dept.

in France and they are always researching Immunocal with many diseases and

with wonderful and amazing results.

Sorry about your Mom, lets get her well.

Sincerely,

McEwen

[Guest guest]

Hello, greetings from W.

I live in the United States and have prostate cancer and have spent very,

very much time in learning all about this disease and how to cure it.

This is not an easy task for one also needs to understand what causes cancer

with there seems to be many faults in the environment as well as some

hereditary factors.

There are things we can control and a few thing we cannot.

One of the most important factors is to do all that is possible to get the

body back in t a harmonious state.

The body needs to be in a healthy state in order to combat cancer.

This requires the best in nutrition, proper rest, a bit of exercise when

possible, good and healthy thoughts and company, and fighting cancer with all

the tools necessary starting with the least invasive methods possible, and

monitoring the progress in 30 to 45 day intervals.

There are as many so called cures in the market place as there are stars in

the solar system. So, this is no easy chore.

The easiest method is working with a doctor who understands both modern

medicine and herbal/nutritional methods.

Cancer is many things and must be fought on many fronts. There may be a day

when a simple injection will eradicate cancer from our bodies.

At the moment, the best method is to properly diagnose the cancer, its

progression, and then a good strategy in combating it.

The report you read and shared with us is a good one. I gives a good

background in how to handle this disease.

Fighting this disease is not to easy to do alone.

I researched the Internet for months and after much reading, decided for

myself the best method I need to take to cure the cancer.

I am almost free of this terrible disease.

Best in health,

W. Huebner

[Guest guest]

Hi ,

Would you mind sharing some of the things that you have done to help yourself

get better? I am helping my husband overcome lung cancer and I have him on a

nutrition program but am always looking to make sure I have researched

enough to make sure all bases are covered.

Flo

[Guest guest]

hi, wait till you hear my story, that is, the path of least resistance taken by my father, and the havoc in the family on a basically solvable person. Our family is destroyed, I am not able to visit all the time nor give supplements...we are one mother and one daughter;;;cheers, CAS

[Guest guest]

Don't give up. I heard of a man who was dying of AIDS, and given only 3 days

to live. But his sister sneaked some of Mannatech's products

into his liquid food (fed through a tube to his stomach). And he

survived to walk out of the hospital.

http://associates.mannatech.com/default.asp

You might try CellFood. It's one of the most impressive Food

Medicine I've seen. You use only 8 drops, twice a day. Some

people use much more, depending on the need. It helps Cancer,

AIDS, and other diseases. It helps radiation damaged persons too.

Perhaps you can give this tiny bottle to your mom. Have her

squeeze a few drops into water. I tried a few drops directly

into my mouth to see what would happen. It's bitter, bitter,

bitter! But one can get used to it.

Another product is Calcium-minerals from Coral. It helps

regulate your pH, which is VERY IMPORTANT for cancers. And

Colloidal Silver helps fight germs. These can all easily be put

in water.

I found a company which has all three of these food medicines.

http://www.coralconnection.com

Cansema III also comes in a tiny bottle. Your mom can put a few

drops directly under her tongue.

http://www.altcancer.com/ct3.htm

Joy

--------------------------------------------------------------------

>

>Dear Group:

>

>I writing from a position of sheer sadness, its been almost one year since

>I joined the group to help my mother.

>

>My mother has days to live, if that, and I'm reflecting on how little can

>be done for a person who has terminal cancer.

>

>Especially when the cancer is within the social fabric of the family.

>

>I will write a brief synopsis soon after my mother passes of my

>experiences, with the hope I can help some other family who is trying to

>help their loved one fight cancer.

>

>I would like to thank those of you who replied to any of my e-mailes.

>

>God Bless, & Thank You.

>

>Regards,

>

>Joe Bavaro

>

>

>

>Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

>

>

[Guest guest]

Please check_

www.bio-bac.com

It can be interesting for you.

regards

coni

-----Mensaje original-----

De: Joe Bavaro [mailto:bavco@...]

Enviado el: viernes, 24 de agosto de 2001 21:20

Para: cures for cancer

Asunto: My Mother

Dear Group:

I writing from a position of sheer sadness, its been almost one year since

I joined the group to help my mother.

My mother has days to live, if that, and I'm reflecting on how little can

be done for a person who has terminal cancer.

Especially when the cancer is within the social fabric of the family.

I will write a brief synopsis soon after my mother passes of my

experiences, with the hope I can help some other family who is trying to

help their loved one fight cancer.

I would like to thank those of you who replied to any of my e-mailes.

God Bless, & Thank You.

Regards,

Joe Bavaro

Get HUGE info at http://www.cures for cancer.ws, and post your own links there.

Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by

visiting http://www.bobhurt.com/subunsub.mv

[Guest guest]

Dear ,

I'm not a medical specialist and no physician so all what I write is no

medical advice and you should/have to check this with your

physician/oncologist.

The people I know with coloncancer started immediatly with the

Houtsmullerdiet (www.kanker-actueel.nl/ca_hout.html) and a lot of

nutritional supplements. I give the list of the supplements of a man who

uses this at the end of this message, but this is very personal and for this

you have to consult an orthomolecular physician in my opinion.

Some of them were operated from the primarly tumor from their colon and some

of them got at the same time a rinsing with heating of chemo for about one

and a half hour (hyperthermy)

Some got also after the surgery chemo (5FU) for several weeks, say six times

for five days with an interuption of three/four weeks between each session.

The diet and the supplements make it easier to undergo this chemo, but still

it is hard, but the results are good.

Some others doesn't take chemo and just follow strictly the diet and take an

extra probiotics. Some of them also do a colonrinsing with warm water etc.

at a private institution in the Netherlands and use the Nutron diet (almost

without any carbohydrates, they seem to be no good for coloncancerpatients,

but please check also for this your oncologist or orthomolecular physician)

And from one person I know that as soon her metastases in her liver were

small enough she went to Italy to remove the rest of her tumors (4) in her

liver with RFA tecnic. And with 100% success. But the liver is also very

sensible for good nutrition and a detoxificationprogram I heard and read. So

if chemo is smart I don't dare to say, but chemo is toxic so maybe it is

better not to use chemo but again I'm not a medical specialist or physician.

In the Netherlands the RFA tecnic is for 100% payed by Public

Healthinsurance.

Only the next supplements, quite expensive (about 400 -450 US$ a month) you

have to pay by yourself though general tax pays part of it (35 till 50%) if

you ask for it. (Its the system in the Netherlands, too complicated too

explain)

Herre are the supplements of a man who also does chemo (5FU) but in two

months his metastases became fast smaller and last week there was just one

small tumor left from the five big ones before in say august.:And he is

still playing golf and kept his hair. so didn't get bold from the chemo. His

primarly tumor was removed surgical, the oncologists didn't want that first

due his metastases, but his 'alternative doctor recommended this with the

start of the diet and suppletion:

In the morning this man takes:

Vitamine E 250 1x before breakfast

Seleno Plus (selenium) 2x at breakfast

Aloë Vera 1x 25 CC at breakfast

Ortho Caroteen 1x at breakfast

Reservatrol 1x at breakfast

Mega Soja 2x at breakfast

Epi Gallo Catechine 2x at breakfast

KSM-intake 2x in the morning

Vitamine A 1x in the morning

Silymarin 3x in the morning

Quercetine C in the morning

Limonene 1x 1 theelepel in the morning with yoghurt

Mensviril 1x in the morning

Q 10 1x in the morning

VSM Berberis druppels 30 druppels in the morning

Curcumin C3 1x in the morning

Afternoon:

Vitamine C 1x middageten=supper

Multigard vitaminen/mineralen 1x middageten

Mega Soja 2x middag=afternoon

KSM-intake 2x middag

Epi Gallo Catechine 2x middag

Vitamine A 1x middag

Silymarin 3x middag

Quercetine 2x middag

Mensviril 1x middag

Curcumin C3 1x middag

Evening:

Vitamine C 1x avondeten=diner

Aloë Vera 1x 25 CC avondeten

Ortho Caroteen 1x avondeten

Reservatrol 1x avondeten

Mega Soja 2x avondeten

Etalpha 1x avondeten

KSM-intake 2x avond=evening

Vitamine A 1x avond

Silymarin 3x avond

Quercetine 2x avond

Curcumin C3 1x avond

Biodopilus 1x (= probiotica) na het avondeten=after diner

Before he goes to bed:

1x Melatonine

I hope this will give you some idea and help for you.

I hope though it may be difficult in your situation, you will find some

peace and happiness with your family and friends during the coming Christmas

and newyears eve.

With kindly regards,

Kees Braam

webmaster www.kanker-actueel.nl

[Guest guest]

, welcome to the group. You will find tons of information here. Indeed, AIH is a bad disease, but personally, if you Mom has MS, to me, that is worse! Anyway, where AIH has no "cure" it can be slowed and for most, we can live a good life if we are responders to our treatment.

As far as not looking up on the internet? Well, no doctor can tell me what I can and cannot do. I believe I must be an active partner. For one, since this is a rather unusual disease, there is not a lot of information on it. Also, I think the doctor probably doesn't want YOU to know more than does HE! Just my own opinion.

I have been dx since July of 01...just one year ago. I still am working on the meds to get that "right" dosage....BUT my levels are close to normal, and I have had problems with the meds. BUT as anyone will tell you here, it is important to know as much as you can about this disease.

Good luck. Your Mom must be a very very special lady...especially to have a daughter like you who cares so much for her!

debby

AIH 7/01

[ ] my mother

hello everyonei just joined the group...my mother just called about10 minutes ago.... she told me that she possibly has autoimmune liver disease or autoimmune hepatitis..... she told me her doctor said DO NOT under ANY circumstance look this up online because he doesn't want us all to freak out.... apparently these are bad diseases...... she has MS already..... she goes in for a biopsy on wednesday...... i'm terrified.... she is an amazing woman.... can anyone tell me anything about these diseases???? thank you for your timecourtney

[Guest guest]

,

Welcome to the group. You will find a lot of information here for

your mother that is not printed in any textbook. These people

have been in the trenches so to speak for years. Some have had

liver transplants, and some are in remission.

Your mother's doctor probably thinks he is helping your mother

by telling her not to research online, but believe me knowledge is

power. The more she knows about AIH the more she will be

prepared for what she might be facing in the future. Please urge

her to make sure she is getting information from VALID and

CREDIBLE websites and that the information is CURRENT.

I remember that when I was diagnosed in Nov. 2001 I freaked

out, but the more I read the more I realized that this disease

(although it has no cure) can be managed with medication. If

your mother has a competent doctor (most of us go to

gastroenterologists or hepatologists), then she will be fine. It is

imperative that her doctor knows how to use the medication to

reduce the liver enzymes.

Debby is probably right when she said that the doctor would feel

intimidated by the information that your mother might find online.

AIH is rare and few doctors have the necessary knowledge. I

can't tell you enough that knowledge is power. If the doctor is

intimidated with your mother's desire to understand this

disease, then maybe she needs to find another doctor.

The liver biopsy is not as painful as it sounds. Just tell your

mother to relax ,and if she needs to ask for sedation, then ask for

it. There is no need to be afraid of the procedure.

Because I am new to AIH, I am learning something new everyday

from everyone in this group.

Welcome and ask any question you wish, someone here will

answer it.

from Wyoming

[Guest guest]

Hi ,

I really have to agree with Debby and , you will have a

greater peace of mind with knowledge as your ally. With each piece

of information, try not to let it overwhelm you but as you gather,

you will be able to understand more what to expect and that is

freeing. Also, I have M.S. and Autoimmune Hepatitis, so if you have

questions, I will try and answer to the best of my ability. My email

address is; hrby97111@.... I received my diagnosis of M.S.

when my liver enyzmes were first flaring and I also had my thryroid

problem diagnosed about the same time. The autoimmune diseases often

come in clusters. That is what happened to me and others in the

group. I am one of the few with M.S. with autoimmune hepatitis. I

hope you write again, this is a great group of people.

Ruth

> ,

>

> Welcome to the group. You will find a lot of information here for

> your mother that is not printed in any textbook. These people

> have been in the trenches so to speak for years. Some have had

> liver transplants, and some are in remission.

>

> Your mother's doctor probably thinks he is helping your mother

> by telling her not to research online, but believe me knowledge is

> power. The more she knows about AIH the more she will be

> prepared for what she might be facing in the future. Please urge

> her to make sure she is getting information from VALID and

> CREDIBLE websites and that the information is CURRENT.

>

> I remember that when I was diagnosed in Nov. 2001 I freaked

> out, but the more I read the more I realized that this disease

> (although it has no cure) can be managed with medication. If

> your mother has a competent doctor (most of us go to

> gastroenterologists or hepatologists), then she will be fine. It is

> imperative that her doctor knows how to use the medication to

> reduce the liver enzymes.

>

> Debby is probably right when she said that the doctor would feel

> intimidated by the information that your mother might find online.

> AIH is rare and few doctors have the necessary knowledge. I

> can't tell you enough that knowledge is power. If the doctor is

> intimidated with your mother's desire to understand this

> disease, then maybe she needs to find another doctor.

>

> The liver biopsy is not as painful as it sounds. Just tell your

> mother to relax ,and if she needs to ask for sedation, then ask for

> it. There is no need to be afraid of the procedure.

>

> Because I am new to AIH, I am learning something new everyday

> from everyone in this group.

>

> Welcome and ask any question you wish, someone here will

> answer it.

>

> from Wyoming

[Guest guest]

Dear , The only way any one can be properly diagnosed with AIH is by having a biopsy done and you said that your mum was having hers done on wednesday until then I wouldn't panic as she will get treatment if she has got it. When she has had her diagnosis I will be happy to help with any questions if I can. In the mean time try not to worry to much and good luck for wednesday let us know how she gets on. Jeanette UK AIH dx 1998 Cirrhosis dx 2001

drummergirl53 <drummergirl53@...> wrote: hello everyonei just joined the group...my mother just called about10 minutes ago.... she told me that she possibly has autoimmune liver disease or autoimmune hepatitis..... she told me her doctor said DO NOT under ANY circumstance look this up online because he doesn't want us all to freak out.... apparently these are bad diseases...... she has MS already..... she goes in for a biopsy on wednesday...... i'm terrified.... she is an amazing woman.... can anyone tell me anything about these diseases???? thank you for your timecourtney

[Guest guest]

hello everyone,

thank you so much for the support and info.... i'm

still very scared..... she's so weak already from the

MS ......... it's not as bad as it could be.... but

still, it's so difficult to see her have to go through

something else in life like this..... anyway, i will

let everyone know what happens.....

any questions you guys can mail me as well....

drummergirl53@...

courtney

__________________________________________________

[Guest guest]

Dear ,

Please keep us posted on your mother’s

condition.

Re: [ ] my

mother

hello everyone,

thank you so much for the support and info.... i'm

still very scared..... she's so weak already from

the

MS ......... it's not as bad as it could

be.... but

still, it's so difficult to see her have to go

through

something else in life like this..... anyway, i

will

let everyone know what happens.....

any questions you guys can mail me as well....

drummergirl53@...

courtney

__________________________________________________

[Guest guest]

-by all means, look these things up on the internet, and then DON'T

freak out! Educate yourself! Don't believe every word you hear from any

one source-everyone's experience is different-everyone's body is different,

and these diseases don't operate like a mathematical equation. You've come

to a good place to get a lot of information, but don't limit yourself to our

little posts, or the internet, the library, etc-use them all. Cathie

>From: " drummergirl53 " <drummergirl53@...>

>Reply-

>

>Subject: [ ] my mother

>Date: Mon, 29 Jul 2002 23:51:59 -0000

>

>hello everyone

>i just joined the group...my mother just called about10 minutes

>ago.... she told me that she possibly has autoimmune liver disease or

>autoimmune hepatitis..... she told me her doctor said DO NOT under

>ANY circumstance look this up online because he doesn't want us all

>to freak out.... apparently these are bad diseases...... she has MS

>already..... she goes in for a biopsy on wednesday...... i'm

>terrified.... she is an amazing woman.... can anyone tell me anything

>about these diseases????

>thank you for your time

>courtney

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

--- In , " Rhonda " <rhonda.jenkins@...>

wrote:

>

> My mom, 76, has Rheumatiod Arthritis for about the past 20 years.

She

> was doctoring with a rheumatologist for about the first 15 years

or

> so. In January of 04 she came down with the Flu and ended up

> hospitalized because the pain from her RA was so bad due to the

flu.

> At that time, I suggested she seek a different doctor because I

had

> been thinking for some time that her RA wasn't doing enough for

her.

> He had her only on ibuprophen and that's it. If she had a " flare "

he

> would put her on prednisone. It seemed like the only thing they

gave

> her that kept the RA under control. She ended up just seeing her

> family physician for about a year after that and then went with a

> doctor who has been an oncologist for years but has just recently

> started taking RA patients. At about that same time she switched

> doctors is when she started taking methotrexate although I cannot

> remember which doctor first started her on the methotrexate. She

has

> been on that for about 2.5 years now. She also has been on

> prednisone more or less nonstop since then too. They have tried

to

> wean her off of it a few times but she always ends up back in the

> hospital about 2 weeks after her last dose and then she ends up

back

> on it again. When I had her in the ER 7th of July, they put her

> back on 20mg a day. But then 7 days later, her dr. dropped it to

5mg a

> day. Too big of a drop too soon if you ask me (they didn't ask me,

> lol).

>

> She keeps getting into these extreme

> amounts of pain that can't seem to be controlled - I guess...

> Yesterday she said she wasn't feeling too good again and I tried to

> get her to call the doctor yesterday but she didn't " sound " toooo

bad

> and she said she would call first thing this morning. So I let it

> go. Well, I get up this morning and find two messages from my

sister

> in law that they were taking her to the doctor's office at 9:30am.

I

> spoke briefly then to my SIL on her cell and she said mom was

pretty

> bad. By 1, I didn't hear anything so I called the doctor's office.

> They said my SIL couldn't get mom out of the car so 2 nurses went

out

> to help and all 3 of them could not get her out of the car because

> her body is wreaking with pain so bad. You just can NOT touch her

> when she gets like this. So they sent her to the ER. The ER

admitted

> my mom and put her on morphine to control the pain. They did

> bloodwork which they stated was " fine " . She had a temp of 102 so

> they are assuming she has an infection somewhere but they don't

know

> where. They did a sinus scan but didn't get back the results

yet.

> This evening her doctor stopped in the room while I was out just

long

> enough to get a cup of coffee (just my luck). He ordered vicodin

for

> her pain, more antibiotics for whatever infection she has, an MRI

of

> her back, and an xray of her lower teeth thinking since they

> are " bad " one of them may be infected.

>

> I am SO FRUSTRATED!!! It's not like she has cancer

> and there is nothing they can do! Rheumatoid arthritis should be a

> manageable illness!

> Whatever they are or

> are not doing is not working! It seems like she keeps getting

> infections and viruses and anytime she gets a pinch of ANYTHING it

> throws her body into excrutiating unbearable pain for days on end.

I

> am interested to know what other people are using to manage their

> RA. So I can tell her doctor what he needs to be doing!!! LOL!

> Thanks!

> Rhonda in PA

>

Dear Rhonda,

How frustrating to see your mother in so much pain and be unable to

help. I am 63, and have had RA for 2 1/2 yrs. I am on methotrexate

and Enbrel which is a self-injection. The Enbrel has given me back

a normal quality of life. I take it once a week. It has truly been

a wonder drug for me. I would suggest your mother find a new

rheumatologist. In my town, there are only 3 and all in the same

arthritis group, but if they did not help me, I would go to Timbukto

for help. Good luck to you and your mom. In this day and age, NO

ONE should be in debilitating pain.

God Bless,

Dianne

[Guest guest]

How very frustrating to watch your mother suffer that way. I am taking:

Prednisone and Imuran but I think it's the Plaquenil that has worked wonders for

me. The only catch is that I'm not sure if I'm taking Plaquenil for the RA, or

for the Lupus. Prednisone has always worked for me, as much as I hate taking

it. I'm hoping that the Imuran will help me get off of that double/edged drug.

I still have flares of RA but they are manageble with an increase in the dosage

of Pred. You are quite right, RA should be a manageble disease, the drs need to

try other meds or different combinations of dosages to find what will work for

her. Or she may need something stronger for the pain. My sister lives on

oxycodin and morphine. It's not a good way to live, but it's better than the

constant pain that goes with her RSD, and most of the time, those 'major' pain

killers have no effect whatsoever. It's so sad to know that your 'baby' sister

is in such bad shape, so I understand how you feel watching your Mom in pain.

Good luck, stay well.

Patsy (63) AZ

DX 2005 Stage 1 PBC

AIH/SLE/RA

[ ] my mother

[Guest guest]

I went to see my mom in the hospital last night. She was no longer

on morphine and she was still in pain. She has an IV. They are

giving her antibiotics. Because she had a temp of 102 in the ER

yesterday, they feel sure she has an infection somewhere in her body

but they don't know where. They said her bloodwork all came

back " normal " . They did a sinus scan but I haven't heard the results

of that. While I was there I stepped out briefly to get a cup of

coffee and just my luck her doctor showed up!!! Ugh! She said he

told her that she would be there a few days and that they are going

to continue antibiotics, do an MRI of the back (I don't know why),

and an xray of her teeth to make sure it's not coming from that -

apparently her bottom teeth are not in good shape. He prescribed

vicodin for pain. She didn't look real good while I was there but

she hadn't really slept in about 72 hours and she was still having

some pain. She said the morphine did NOT make all the pain go away.

I talked to her on the phone briefly today. It's hard to talk to her

on the phone because she has to twist around to get to the phone and

well, doing anything, even just holding the phone to her ear, hurts

her. She had just come from xray when I talked to her and she

sounded like getting the xrays was torture. She said they took xrays

of inside her mouth, her neck, shoulders, etc. She said the doctor

asked her over and over if she was sure she didn't fall. She

didn't. She is still in extreme pain. He seems to be stumped and

brought up sending her records to the local rheumatologist to look

at. She used to see him and he would only ever prescribe her

ibuprophen so I'm really not too keen on her going back there.

I made her an appointment for next Wednesday at the Athritis and

Osteoporosis Center about an hour west of where we live. Her current

doctors are about 45 minutes east so this might get interesting in

how they do (or do not) communicate. Anyway, they are specialists

there and deal with this everyday and it's ALL they deal with. It's

not going to be easy. It's hard for her to travel because of the

pain. Plus she will have to start at square one and they will have

to try to get to know her whole history and what might work for her.

I'm guessing it will take time. I don't know honestly how much time

she has! But I made the appt. So we will see...

Rhonda in PA

[Guest guest]

Rhonda, I am on one of the biologic drugs, Enbrel, and it is working

extremely well for me. It's expensive, but if she has insurance that

would cover it, it would be worth looking into. Many people here are on

methotrexate and find that it works well for them. Maybe you should

find her a new rheumatologist.

Sue

On Tuesday, July 25, 2006, at 10:59 PM, Rhonda wrote:

>

> I am interested to know what other people are using to manage their

> RA. So I can tell her doctor what he needs to be doing!!! LOL!

> Thanks!

[Guest guest]

-Rhonda--

HI, I have been reading about your mother, I am so sorry that she is

in this amount of pain. I have a question....where exactly is her

pain?? is it all over and through her body or in a specific spot??

Has anyone done a bone scan on her for osteoporosis?? This can be

extremely painful (more painful than can be imagined!!!) and I

thought it just might be a different place to look!..........you know

no stone unturned!!.........I hope that she is feeling better...and

that you update us on what they are dong for her! jenna

In , " Rhonda " <rhonda.jenkins@...> wrote:

>

> My mom, 76, has Rheumatiod Arthritis for about the past 20 years.

She

> was doctoring with a rheumatologist for about the first 15 years or

> so. In January of 04 she came down with the Flu and ended up

> hospitalized because the pain from her RA was so bad due to the

flu.

> At that time, I suggested she seek a different doctor because I had

> been thinking for some time that her RA wasn't doing enough for

her.

> He had her only on ibuprophen and that's it. If she had a " flare "

he

> would put her on prednisone. It seemed like the only thing they

gave

> her that kept the RA under control. She ended up just seeing her

> family physician for about a year after that and then went with a

> doctor who has been an oncologist for years but has just recently

> started taking RA patients. At about that same time she switched

> doctors is when she started taking methotrexate although I cannot

> remember which doctor first started her on the methotrexate. She

has

> been on that for about 2.5 years now. She also has been on

> prednisone more or less nonstop since then too. They have tried to

> wean her off of it a few times but she always ends up back in the

> hospital about 2 weeks after her last dose and then she ends up

back

> on it again. When I had her in the ER 7th of July, they put her

> back on 20mg a day. But then 7 days later, her dr. dropped it to

5mg a

> day. Too big of a drop too soon if you ask me (they didn't ask me,

> lol).

>

> She keeps getting into these extreme

> amounts of pain that can't seem to be controlled - I guess...

> Yesterday she said she wasn't feeling too good again and I tried to

> get her to call the doctor yesterday but she didn't " sound " toooo

bad

> and she said she would call first thing this morning. So I let it

> go. Well, I get up this morning and find two messages from my sister

> in law that they were taking her to the doctor's office at 9:30am. I

> spoke briefly then to my SIL on her cell and she said mom was pretty

> bad. By 1, I didn't hear anything so I called the doctor's office.

> They said my SIL couldn't get mom out of the car so 2 nurses went

out

> to help and all 3 of them could not get her out of the car because

> her body is wreaking with pain so bad. You just can NOT touch her

> when she gets like this. So they sent her to the ER. The ER

admitted

> my mom and put her on morphine to control the pain. They did

> bloodwork which they stated was " fine " . She had a temp of 102 so

> they are assuming she has an infection somewhere but they don't

know

> where. They did a sinus scan but didn't get back the results yet.

> This evening her doctor stopped in the room while I was out just

long

> enough to get a cup of coffee (just my luck). He ordered vicodin

for

> her pain, more antibiotics for whatever infection she has, an MRI

of

> her back, and an xray of her lower teeth thinking since they

> are " bad " one of them may be infected.

>

> I am SO FRUSTRATED!!! It's not like she has cancer

> and there is nothing they can do! Rheumatoid arthritis should be a

> manageable illness!

> Whatever they are or

> are not doing is not working! It seems like she keeps getting

> infections and viruses and anytime she gets a pinch of ANYTHING it

> throws her body into excrutiating unbearable pain for days on end. I

> am interested to know what other people are using to manage their

> RA. So I can tell her doctor what he needs to be doing!!! LOL!

> Thanks!

> Rhonda in PA

>

[Guest guest]

Rhonda,

I'm very sorry to hear about your mother's situation.

If the arthritis and osteoporosis center doesn't work out, you might

consider traveling to s Hopkins, Mayo Clinic, Cleveland Clinic, or the

University of Pittsburgh where you would have a good chance of getting an

accurate diagnosis of her problems and then a recommendation for the

appropriate course of action (which can be implemented locally).

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] my mother

> My mom, 76, has Rheumatiod Arthritis for about the past 20 years. She

> was doctoring with a rheumatologist for about the first 15 years or

> so. In January of 04 she came down with the Flu and ended up

> hospitalized because the pain from her RA was so bad due to the flu.

> At that time, I suggested she seek a different doctor because I had

> been thinking for some time that her RA wasn't doing enough for her.

> He had her only on ibuprophen and that's it. If she had a " flare " he

> would put her on prednisone. It seemed like the only thing they gave

> her that kept the RA under control. She ended up just seeing her

> family physician for about a year after that and then went with a

> doctor who has been an oncologist for years but has just recently

> started taking RA patients. At about that same time she switched

> doctors is when she started taking methotrexate although I cannot

> remember which doctor first started her on the methotrexate. She has

> been on that for about 2.5 years now. She also has been on

> prednisone more or less nonstop since then too. They have tried to

> wean her off of it a few times but she always ends up back in the

> hospital about 2 weeks after her last dose and then she ends up back

> on it again. When I had her in the ER 7th of July, they put her

> back on 20mg a day. But then 7 days later, her dr. dropped it to 5mg a

> day. Too big of a drop too soon if you ask me (they didn't ask me,

> lol).

>

> She keeps getting into these extreme

> amounts of pain that can't seem to be controlled - I guess...

> Yesterday she said she wasn't feeling too good again and I tried to

> get her to call the doctor yesterday but she didn't " sound " toooo bad

> and she said she would call first thing this morning. So I let it

> go. Well, I get up this morning and find two messages from my sister

> in law that they were taking her to the doctor's office at 9:30am. I

> spoke briefly then to my SIL on her cell and she said mom was pretty

> bad. By 1, I didn't hear anything so I called the doctor's office.

> They said my SIL couldn't get mom out of the car so 2 nurses went out

> to help and all 3 of them could not get her out of the car because

> her body is wreaking with pain so bad. You just can NOT touch her

> when she gets like this. So they sent her to the ER. The ER admitted

> my mom and put her on morphine to control the pain. They did

> bloodwork which they stated was " fine " . She had a temp of 102 so

> they are assuming she has an infection somewhere but they don't know

> where. They did a sinus scan but didn't get back the results yet.

> This evening her doctor stopped in the room while I was out just long

> enough to get a cup of coffee (just my luck). He ordered vicodin for

> her pain, more antibiotics for whatever infection she has, an MRI of

> her back, and an xray of her lower teeth thinking since they

> are " bad " one of them may be infected.

>

> I am SO FRUSTRATED!!! It's not like she has cancer

> and there is nothing they can do! Rheumatoid arthritis should be a

> manageable illness!

> Whatever they are or

> are not doing is not working! It seems like she keeps getting

> infections and viruses and anytime she gets a pinch of ANYTHING it

> throws her body into excrutiating unbearable pain for days on end. I

> am interested to know what other people are using to manage their

> RA. So I can tell her doctor what he needs to be doing!!! LOL!

> Thanks!

> Rhonda in PA

[Guest guest]

I am sorry I have not been able to respond to each post. I have been

reading them all and I have been trying to absorb all the

information. I really appreciate it.

They have FINALLY figured out what is causing the severe pain in my

mother. She has several disks in her neck that are deformed from the

Rheumatoid Arthritis that's causing pinched nerves and encroachment

of the spinal cord. They wanted to transfer her to a neurosurgeon

about 1.5 hours east of me. Right now she is 30 minutes east of me

and 1.5 hours east of her brothers/sisters. Theya re elderly as well

and going that much farther will ensure that they don't get to visit

her much. I wouldn't get down there more than once a week myself

since I have young children and my husband works 12 hours a day.

It's hard right now going 30 min. away but I try to go every day.

So... after several conversations with her doctor today, I am doing

my best to get him to transfer her to a neurosurgeon that I know has

a good reputation and is about an hour west of me. It's actually in

the city where her bros/sisters live. I know my mother and being

close to family is *almost* as important as the problem itself. It

will be harder for me to get there than where she is now but I feel

sure her bros/sisters will visit her daily if she is there. I gave

her dr the neurosurgeon's information and he agreed to call him. A

bit later, I called the neurosurgeon's office myself and they said

her doctor had just called but the neurosurgeon is in surgery this

morning. They said he will talk to her current dr when he gets out

of surgery. I guess I will find out later this afternoon if he

agrees to take her case and she can go to the closer hospital.

Regarding the specialist that I was to take her to for an initial

consult tomorrow morning... if she goes to the closer Hospital (same

city where the RA specialist is at) - the hospital will have to call

the RA center and ask for someone to come in and see her and then

whichever dr is on call from the RA center will see her. I guess I

cannot just call and ask him to stop in and see her there at the

hospital. But one way or the other, I will get her to him or him to

her or whatever.

Thank you again for all your well wishes and comments. It is MUCH

appreciated!

Rhonda in PA

[Guest guest]

Your mom is so lucky to have you looking out for ALL her needs

rather than just the physical ones. You're a great daughter!

--- In , " Rhonda " <rhonda.jenkins@...>

wrote:

>

> I am sorry I have not been able to respond to each post. I have

been

> reading them all and I have been trying to absorb all the

> information. I really appreciate it.

>

> They have FINALLY figured out what is causing the severe pain in

my

> mother. She has several disks in her neck that are deformed from

the

> Rheumatoid Arthritis that's causing pinched nerves and

encroachment

> of the spinal cord. They wanted to transfer her to a neurosurgeon

> about 1.5 hours east of me. Right now she is 30 minutes east of

me

> and 1.5 hours east of her brothers/sisters. Theya re elderly as

well

> and going that much farther will ensure that they don't get to

visit

> her much. I wouldn't get down there more than once a week myself

> since I have young children and my husband works 12 hours a day.

> It's hard right now going 30 min. away but I try to go every day.

> So... after several conversations with her doctor today, I am

doing

> my best to get him to transfer her to a neurosurgeon that I know

has

> a good reputation and is about an hour west of me. It's actually

in

> the city where her bros/sisters live. I know my mother and being

> close to family is *almost* as important as the problem itself.

It

> will be harder for me to get there than where she is now but I

feel

> sure her bros/sisters will visit her daily if she is there. I

gave

> her dr the neurosurgeon's information and he agreed to call him.

A

> bit later, I called the neurosurgeon's office myself and they said

> her doctor had just called but the neurosurgeon is in surgery this

> morning. They said he will talk to her current dr when he gets

out

> of surgery. I guess I will find out later this afternoon if he

> agrees to take her case and she can go to the closer hospital.

>

> Regarding the specialist that I was to take her to for an initial

> consult tomorrow morning... if she goes to the closer Hospital

(same

> city where the RA specialist is at) - the hospital will have to

call

> the RA center and ask for someone to come in and see her and then

> whichever dr is on call from the RA center will see her. I guess

I

> cannot just call and ask him to stop in and see her there at the

> hospital. But one way or the other, I will get her to him or him

to

> her or whatever.

>

> Thank you again for all your well wishes and comments. It is MUCH

> appreciated!

>

> Rhonda in PA

>

[Guest guest]

--Rhonda,

Well, no wonder she was in so much pain. I hope that now they are

addressing her pain apropriatly and she is no longer in such agony.

In this day and age there is no reason for someone to be in that much

pain!! Thats why they made pain meds in the first place. It sounds as

though you really have things under control and are thinking about

your mother and what she really needs now. It is very unselfish of

you to consider moving her further from you in order for her to be

closer where her siblings can visit. Even though it will make it

harder for you, in the long run she will probably be happier knowing

that they can come and visit too. And it will take some of the weight

off of you knowing that so-and so was there today and someone else is

going tomorrow....so that you can also take care of your family while

all of this is so new to everyone. Maybe her siblings could even take

her laundry home and do it for her...that way it won't get lost and

her " nice things " will stay nicer longer...nursing home laundry gets

no special attention like we take at home...it all gets thrown in

together. And she probably won't really have much to do at all...just

a few nighties and underthings. All and all it seems as though you

have worked really hard to get your mother what she needs, and to get

her into a place where she will have more company. I hope that when

my time comes that my kids do a well for me....may I give them your

number for tips and ideas?? (just kidding)...but I mean it you have

done a very good job at organizing all this and deserve to feel

really good about yourself and what you have accomplished here!!!

Your mother must feel like she is a very special person to have all

this done just to make her happy, comfortable, and well cared

for!!!....................jenna

- In , " Rhonda " <rhonda.jenkins@...> wrote:

>

> They have FINALLY figured out what is causing the severe pain in my

> mother. She has several disks in her neck that are deformed from

the

> Rheumatoid Arthritis that's causing pinched nerves and encroachment

> of the spinal cord. They wanted to transfer her to a neurosurgeon

> about 1.5 hours east of me. Right now she is 30 minutes east of me

> and 1.5 hours east of her brothers/sisters. Theya re elderly as

well

> and going that much farther will ensure that they don't get to

visit

> her much.

> So... after several conversations with her doctor today, I am doing

> my best to get him to transfer her to a neurosurgeon that I know

has

> a good reputation and is about an hour west of me. It's actually

in

> the city where her bros/sisters live. I know my mother and being

> close to family is *almost* as important as the problem itself. It

> will be harder for me to get there than where she is now but I feel

> sure her bros/sisters will visit her daily if she is there. >

Rhonda in PA

>

[Guest guest]

Hi Tere

sending love & prayers for your mum

and you what a hard time you are both going

through

namaste

kate

--- In , Tere Krazit <krazit21@...>

wrote:

>

> Hello Everyone,

>

> I need your help!

>

> My mother is receiving cancer treatment (breast) and

> she has done through allot of tram because my aunt

> pass away in February because of cancer (again - it

> started in the breast). My grandmother (my mother's

> mother) and an another aunt from my mother side past

> away a couple of years ago also pasted away. Plus two

> of my mother's sister had breast remove due to cancer,

> too.

>

> My mother has not always been right in the head -

> simple english.

>

> Today, she broke down and told me that at night she

> is hearing my aunt (pasted away in Feb.) that my aunt

> telling her to join her. I know my aunt, she was a

> sweetheart, loved my mother, loved life, and I know

> she would only want the best for my mother (not

> death). I feel that either it's all in my mother's

> head or there is a bad spirit talking to her (leading

> toward this).

>

> Can you please pray for my mother?

>

> Thank you all!

>

> Carino y luz,

> Tere

>

>

>

>

_____________________________________________________________________

_______________

> Don't get soaked. Take a quick peak at the forecast

> with the Search weather shortcut.

> http://tools.search./shortcuts/#loc_weather

>

[Guest guest]

Tere,

I will pray for you and your mother, this is a journey you both will be on ( I'm sure you want to be there for your mother, to comfort her) together. It's been my experance that when an illness occures like this (cancer) sometimes a loved one from the other side comes to visit, I don't feel it is necessarily a bad thing more so ment as a comforting experiance from a spirit of a loved one that has walked this journey before them and understands there fears, and has come to let them know they are not alone. Be comforted in the knowledge that God is in controll and you are a wonderful daughter, to go out and ask for prayers for your mom, you are an amazing human being .

May the beauty of God's Light & Love contiue to shine threw you.

Blessings, Debbie

Tere- -- In , Tere Krazit <krazit21@...> wrote:>> Hello Everyone,> > I need your help!> > My mother is receiving cancer treatment (breast) and> she has done through allot of tram because my aunt> pass away in February because of cancer (again - it> started in the breast). My grandmother (my mother's> mother) and an another aunt from my mother side past> away a couple of years ago also pasted away. Plus two> of my mother's sister had breast remove due to cancer,> too.> > My mother has not always been right in the head -> simple english.> > Today, she broke down and told me that at night she> is hearing my aunt (pasted away in Feb.) that my aunt> telling her to join her. I know my aunt, she was a> sweetheart, loved my mother, loved life, and I know> she would only want the best for my mother (not> death). I feel that either it's all in my mother's> head or there is a bad spirit talking to her (leading> toward this).> > Can you please pray for my mother?> > Thank you all!> > Carino y luz,> Tere> > > > ____________________________________________________________________________________> Don't get soaked. Take a quick peak at the forecast> with the Search weather shortcut.> http://tools.search./shortcuts/#loc_weather>