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Patti:

Keep your chin up until tomorrow. Your husband sounds like a nut. I have a

sister that just got married and her husband is crazy too. He is always

making her laugh and that is something my sister needed in her life. Her

husband of 20 years was the time to say, you too fat, you spend too much, the

house is dirty. Never thanks.

Your husband is going through some tough times and ofcouse you are the one

that will take all the grief until he knows something.

My prayers for you.

Sue AIH

Wisconsin

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  • 7 years later...

Hi Lelita,

you're welcome. I'm glad your husband has that attitude. However,

if things do start looking worse for you, this could be part of the

die off or healing and that could be a concern if he misinterprets

this as a failure of the diet, or that you're somehow being

nutritionally deprived.

Please consider that aspect of it, because upon starting this diet

and giving up these things, it's quite normal and in fact, very

common to get worse for a time and if you or your husband are not

prepared for that, you may opt out of the diet before giving things

chance to turn around.

Also, things do not normally improve on an upward scale at first,

they can seem to go around in cirlces or like a roller coaster ride,

with symptoms swirling and a person feeling bad on different levels

before some improvements are noted.

So long as YOU are prepared for that, maybe your husband will in time

start to understand the healing crisis, especially if you begin to

improve. THen he will appreciate this and it's a learning curb for

all of us, and him too! Takes a long time before people accept

things and at first they oppose it, argue it and are cynical towards

it. Later, they begin to accept it when things become evident and

they see the changes in their spouse/partner.

Take care and your husband is a good man! He just needs to see

sometimes initial worsenings, are signs of toxic elimination. That

may take some convincing ;)

.

>

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  • 7 months later...
Guest guest

Dear Judith,

I am sorry to read your post so late and was not there on time to help you with

my little knowledge and experience about pain. I hope you are feeling better by

now, I gave some recommendations to for her husband, may those be

useful for you too.In your recent post you are talking about taking calcium,

there are some points that we should pay attention to when we need to take

calcium.

Based on research and clinical experience, plus the studies of world renowned

experts. taking more than a low dose calcium supplements is unnecessary and

taking calcium alone is worthless.

multivitamin / mineral supplements with an additional vitamin c, plus a

small dose of calcium/magnesium make the most sense, vitamin D3, Chromium,

silicon and boron are beneficial additions.

medical literature is filled with many articles supporting the view that

calcium supplementation in huge doses, particularly without the necessary

cofactors, is not the way to control or prevent osteoporosis.

magnesium vitamin d and other essential nutrients are vitally important to

control calcium. these nutrients are the key to maximum calcium

utilization.without these vital nutrients you could be overdosing on

calcium. when calcium alone is taken in high dosage, calcium absorption

actually decreases. this is an example of your body's control mechanism

protecting you from toxicity.

I wish you the very best of heath,

Peace Soudi

Certified Holistic Nutrition Consultant

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Guest guest

However, if your doctor has prescribed calcium with D3 (as mine has)

I think you should follow your doctor's advice or at least discuss it

with your doctor before discontinuing the treatment! Rahaee, could

we please have links to the research and studies of " world renowned

experts " ? Thanks.

regards to all,

sherry z

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Hi Sherry,

The references are:

a.. Heaney RP and WeaverCM, calcium absorption from Kale.Am J Clin Nutr

51,656,657,1990

b.. Bourgoin BP, DR,Cornett JR,et al, Lead content in 70 brands of

dietary calcium supplements.Am J public-health 83,1155-1160,1993.

c.. Recker R, calcium absorption and achlorhydria.NEngl J Med 313,70-73,1985

d.. Encyclopaedia of Nutritional supplements by Dr

Murray,N.D.149-158.1996

e.. Startling New Facts About Osteoporosis by Dr Betty Kamen Ph.D 1989 (I

think this book is really useful to be read by all women over 50)

please pay attention: my recommendations and protocols for nutritional support

are not intended as a substitute for appropriate medical care.

Make your physician aware of all the nutritional supplements or herbal

products you are currently taking or you are going to take, to avoid any

negative interactions with any drug you are taking.

I wish you the very best of heath,

Peace soudi

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Guest guest

Thank you. I don't see how the first 3 references apply to what you

posted about calcium supplements. The closest is the one about lead

content, but most other articles I found on that subject pointed out

that this is expected to be more germaine to supplements for children

than for adults and that there is not enough evidence to warrant

discontinuing calcium supplements. Could you be more specific about

what you read in these articles that lead to this conclusion?

The book (encyclopedia) by Murray I did not purchase, but I did find

several articles about him and his books on quackwatch dot com.

Likewise for Betty Kamen, PhD, both on quackwatch and herbalwatch and

the Canadian equivalent of quackwatch. I am skeptical of both these

people and urge anyone who is being influenced by them to at least do

some additional research on their claims and note that they are not

being published in peer-reviewed medical journals to my knowledge.

Thanks for any more specific info you can provide!

regards,

sherry z

>

> Hi Sherry,

>

> The references are:

> a.. Heaney RP and WeaverCM, calcium absorption from Kale.Am J Clin

Nutr 51,656,657,1990

> b.. Bourgoin BP, DR,Cornett JR,et al, Lead content in 70

brands of dietary calcium supplements.Am J public-health 83,1155-

1160,1993.

> c.. Recker R, calcium absorption and achlorhydria.NEngl J Med

313,70-73,1985

> d.. Encyclopaedia of Nutritional supplements by Dr

Murray,N.D.149-158.1996

> e.. Startling New Facts About Osteoporosis by Dr Betty Kamen Ph.D

1989 (I think this book is really useful to be read by all women over

50)

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Guest guest

Dear All,

At the request of a dear friend from the list, I have followed this thread

very closely. It appears that some people are beginning to spout certain

information as " truth " when, in fact, that information is not based on solid

scientific (or even clinical) studies. Some people have again begun to make

claims that if you follow certain health or diet regimens or take certain

supplements, that you will be magically cured of PA. Let it be said,

emphatically,

that there is almost no scientific data to back up these claims. Citing old

studies of little relevance to the claims is hardly scientific proof.

Quoting people who have written books whose sole purpose is to make the author

rich

or to cultivate a list of followers is not helpful to the members of this

list. It is, in fact, the opposite, as it can cause people to delay seeking

proper treatment or cause people with very limited financial resources to throw

their money away on things that enrich the vendors of these products but do

nothing to help people with PA.

IF you have an allergy to nightshades, elimating nightshades from your diet

will reduce inflammation. IF you have an allergy to gluten, you should, of

course, eliminate gluten products from your diet. However, if you don't have

allergies to certain foods, eliminating them from your diet will NOT reduce

your pain and inflammation. It is extremely important to our health as human

beings that we eat things that are good for us and that we follow sensible

diets, but it has not been demonstrated by any " accepted " scientific studies

that following certain diets, or taking certain supplements will help cure

disease. Our disease is one of many that has no known cure. None. Anyone who

makes claims to the contrary is doing you harm. A healthy diet and a healthy

body should not normally require one to take supplements. If your diet and

your body have satisfactory levels of nutrients and minerals, taking things

you don't need will not help you. IF your doctor has detected vitamin or

mineral deficiencies, THESE and only these should be regulated via supplements.

Our disease is a progressive one. That means that unless it is treated by

proper medications, it will likely worsen over time. Maintaining a healthy

diet and fitness regimen will serve you well, however, it will NOT cure PA.

There are some medications (DMARDS and Biologics) that have been SCIENTIFICALLY

shown to slow the progression of the disease. There are other medications

that have been shown to be helpful in reducing pain and inflammation.

These are the things that people with PA should be researching, investigating

and discussing with quality medical advisors (i.e. not quacks who are looking

to get rich) in addition to the common sense advice to eat healthy, watch your

weight and exercise as best you can.

Please do not risk your health, time and money following the advice of folks

whose " cures " and " treatments " are unfounded. IF these things had merit,

the developers of these routines would have received Nobel prizes. They

wouldn't need to reach out to desperate sufferers via lists such as this. If

it

sounds too good to be true, it is. Don't let anyone cause you harm by delaying

you from getting the care and treatment you need as a person living with PA.

Bless you, Sherry, for keeping this list balanced and focussed on reality.

Kathy F.

In a message dated 7/6/2007 6:36:36 AM Eastern Daylight Time,

szorzi_1999@... writes:

Thank you. I don't see how the first 3 references apply to what you

posted about calcium supplements. The closest is the one about lead

content, but most other articles I found on that subject pointed out

that this is expected to be more germaine to supplements for children

than for adults and that there is not enough evidence to warrant

discontinuing calcium supplements. Could you be more specific about

what you read in these articles that lead to this conclusion?

The book (encyclopedia) by Murray I did not purchase, but I did find

several articles about him and his books on quackwatch dot com.

Likewise for Betty Kamen, PhD, both on quackwatch and herbalwatch and

the Canadian equivalent of quackwatch. I am skeptical of both these

people and urge anyone who is being influenced by them to at least do

some additional research on their claims and note that they are not

being published in peer-reviewed medical journals to my knowledge.

Thanks for any more specific info you can provide!

regards,

sherry z

************************************** See what's free at http://www.aol.com.

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Guest guest

It is so nice to see a post from you the list has not been the same

since you left. The content is unchallenged and it seems like a lot of

the regulars have disappeared. Just look at the number of posts over

the last month to compare the numbers is there any way you will

consider coming back and making this group what it used to be? I am

sure a lot of the others would agree we miss you and need you. Take

care and have wonderful day LINDA

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Guest guest

>

sorry the first line on this post was supposed to read

Kathy F:

> It is so nice to see a post from you the list has not been the same

> since you left. The content is unchallenged and it seems like a lot of

> the regulars have disappeared. Just look at the number of posts over

> the last month to compare the numbers is there any way you will

> consider coming back and making this group what it used to be? I am

> sure a lot of the others would agree we miss you and need you. Take

> care and have wonderful day LIND

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  • 1 year later...

Cheryl - It is so good to hear from you! This board has many caring

members who are lifting you and your family up in prayer. We were all

so extremely sorry and saddened by the tragic event that occurred in

your family. The thoughts and prayers of all of us are with you! We

love you, Cheryl! - Dom

In dominie , " godsgirl7757 " <godsgirl7777@...> wrote:

>

> I just wanted to tell all of you who were so incredibly thoughtful and

> kind to send us cards during the recent loss of our son Garrett how

> much it touched our broken hearts.

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  • 1 year later...
Guest guest

Wow, I really did it. I really recovered from this awful, painful, disabling

disease. The one that my first doctor said I would die from, and that

subsequent doctors said I would never recover from. It was a long, hard

journey back, but so awe inspiring what the body can accomplish when given

what it needs, and so worth it to have another shot at life and all good

things. I am so humbled and so very very grateful to this group beyond

words- I would never have found out about this treatment and believed in it

without all of you who have gone before me. From all of you and your stories

I was able to hold on to the strength and courage I needed to stay on this

path without acceding to the threats and intimidations of doctors who didn't

believe. I am still so young, and there is Life again, and joy and love and

fun and opportunities, and everything I was missing for so long is coming

back or already has returned.

Thank you Thank you Thank you Thank you

I hope everyone still on the journey will get here too.

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Guest guest

How wonderful and inspiring, Caren. You don't say which of the diseases you

have. My daughter has M.S. and systemic scleroderma. Please let us know.

So happy for you - truly.

Ellen McCool

rheumatic Thank you all so much

Wow, I really did it. I really recovered from this awful, painful, disabling

disease. The one that my first doctor said I would die from, and that

subsequent doctors said I would never recover from. It was a long, hard

journey back, but so awe inspiring what the body can accomplish when given

what it needs, and so worth it to have another shot at life and all good

things. I am so humbled and so very very grateful to this group beyond

words- I would never have found out about this treatment and believed in it

without all of you who have gone before me. From all of you and your stories

I was able to hold on to the strength and courage I needed to stay on this

path without acceding to the threats and intimidations of doctors who didn't

believe. I am still so young, and there is Life again, and joy and love and

fun and opportunities, and everything I was missing for so long is coming

back or already has returned.

Thank you Thank you Thank you Thank you

I hope everyone still on the journey will get here too.

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Guest guest

Caren, you are an inspiration! I'm so happy for you!

rheumatic Thank you all so much

>>

>> Wow, I really did it. I really recovered from this awful, painful,

>> disabling

>> disease. The one that my first doctor said I would die from, and that

>> subsequent doctors said I would never recover from. It was a long, hard

>> journey back, but so awe inspiring what the body can accomplish when

>> given

>> what it needs, and so worth it to have another shot at life and all good

>> things. I am so humbled and so very very grateful to this group beyond

>> words- I would never have found out about this treatment and believed in

>> it

>> without all of you who have gone before me. From all of you and your

>> stories

>> I was able to hold on to the strength and courage I needed to stay on

>> this

>> path without acceding to the threats and intimidations of doctors who

>> didn't

>> believe. I am still so young, and there is Life again, and joy and love

>> and

>> fun and opportunities, and everything I was missing for so long is coming

>> back or already has returned.

>>

>> Thank you Thank you Thank you Thank you

>>

>> I hope everyone still on the journey will get here too.

>>

>>

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Guest guest

Hi, Caren,

The antibiotics helped with the skin tightening and pains associated with the

scleroderma. But she has so many other problems, mainly associated with the

multiple sclerosis, that we aren't sure sometimes which symptoms are indicating

which disease. It can get confusing. She stopped taking the minocycline, but

I'm encouraging her to start it up again. We haven't seen the rheumatologist in

over a year now. He is certain to want her to get back on the AP.

Caren, your story is amazing. What you have been through and survived without

losing your courage and positive outlook is a marvel. I will tell you a bit

more about my daughter another time. It is very late and I must get into bed!

I'm sorry I noticed your email so late in the day (or early in the morning!).

At any rate, I'll contact you probably tomorrow or the next day.

Talk to you later.

Ellen

rheumatic Thank you all so much

>

> Wow, I really did it. I really recovered from this awful, painful,

> disabling

> disease. The one that my first doctor said I would die from, and that

> subsequent doctors said I would never recover from. It was a long, hard

> journey back, but so awe inspiring what the body can accomplish when given

> what it needs, and so worth it to have another shot at life and all good

> things. I am so humbled and so very very grateful to this group beyond

> words- I would never have found out about this treatment and believed in it

> without all of you who have gone before me. From all of you and your

> stories

> I was able to hold on to the strength and courage I needed to stay on this

> path without acceding to the threats and intimidations of doctors who

> didn't

> believe. I am still so young, and there is Life again, and joy and love and

> fun and opportunities, and everything I was missing for so long is coming

> back or already has returned.

>

> Thank you Thank you Thank you Thank you

>

> I hope everyone still on the journey will get here too.

>

>

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Guest guest

Caren, I don't know if I ever answered this from you.

Antibiotics helped my daughter's scleroderma, but she stopped taking them. I

fear the symptoms will return if she doesn't start taking them again. The M.S.,

on the other hand, only continues to worsen. She has the progressive type.

Kind of difficult to deal with, as you can imagine.

Your story is wonderfully inspiring - truly. My daughter read it and I'm hoping

it will light a fire under her. She was quite impressed.

Good luck to you - and don't ever let your guard down. If you feel any symptoms

returning - even in the slightest way - get back on the AP!

Ellen

rheumatic Thank you all so much

>

> Wow, I really did it. I really recovered from this awful, painful,

> disabling

> disease. The one that my first doctor said I would die from, and that

> subsequent doctors said I would never recover from. It was a long, hard

> journey back, but so awe inspiring what the body can accomplish when given

> what it needs, and so worth it to have another shot at life and all good

> things. I am so humbled and so very very grateful to this group beyond

> words- I would never have found out about this treatment and believed in it

> without all of you who have gone before me. From all of you and your

> stories

> I was able to hold on to the strength and courage I needed to stay on this

> path without acceding to the threats and intimidations of doctors who

> didn't

> believe. I am still so young, and there is Life again, and joy and love and

> fun and opportunities, and everything I was missing for so long is coming

> back or already has returned.

>

> Thank you Thank you Thank you Thank you

>

> I hope everyone still on the journey will get here too.

>

>

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Guest guest

Ellen:

Did your daughter do the combined antibiotic protocol that is being used

successfully for MS, aka the Stratton or Wheldon Protocols?

Dr. Stratton has an MS clinic at Vanderbilt University that is studying and

researching these protocols for MS. I am hoping that you are already aware of

this.

Sorry your daughter is suffering from two such devastating illnesses, but I am

glad to hear that the scleroderma is under control for now. My daughter is also

in remission from systemic scleroderma, but she continues to take antibiotics

(minocin and others). She has successfully taken some extended breaks from the

antibiotics, but she will probably never go off them permanently.

Cheryl

Sent from my Verizon Wireless BlackBerry

Re: rheumatic Thank you all so much

Caren, I don't know if I ever answered this from you.

Antibiotics helped my daughter's scleroderma, but she stopped taking them. I

fear the symptoms will return if she doesn't start taking them again. The M.S.,

on the other hand, only continues to worsen. She has the progressive type.

Kind of difficult to deal with, as you can imagine.

Your story is wonderfully inspiring - truly. My daughter read it and I'm hoping

it will light a fire under her. She was quite impressed.

Good luck to you - and don't ever let your guard down. If you feel any symptoms

returning - even in the slightest way - get back on the AP!

Ellen

rheumatic Thank you all so much

>

> Wow, I really did it. I really recovered from this awful, painful,

> disabling

> disease. The one that my first doctor said I would die from, and that

> subsequent doctors said I would never recover from. It was a long, hard

> journey back, but so awe inspiring what the body can accomplish when given

> what it needs, and so worth it to have another shot at life and all good

> things. I am so humbled and so very very grateful to this group beyond

> words- I would never have found out about this treatment and believed in it

> without all of you who have gone before me. From all of you and your

> stories

> I was able to hold on to the strength and courage I needed to stay on this

> path without acceding to the threats and intimidations of doctors who

> didn't

> believe. I am still so young, and there is Life again, and joy and love and

> fun and opportunities, and everything I was missing for so long is coming

> back or already has returned.

>

> Thank you Thank you Thank you Thank you

>

> I hope everyone still on the journey will get here too.

>

>

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Guest guest

Hi, Cheryl,

So much has happened over the last 5 years, including a replacement hip

operation for my daughter, surgery to implant a Baclofen pump, and thyroid

surgery. Gosh, I know I'm forgetting something. (There were some minor

surgeries, one of which was to implant a vena cava filter.) But what I'm

trying to say is that we've put Stratton and any other alternative protocols on

hold to take care of other problems. Also, my daughter is a patient now at

the M.S. Clinic of Atlanta and receives an I.V. infusion once a month. We

won't be using any other medications unless and until we feel that what we're

doing is fruitless. (So far, the M.S. remains unchanged - it even has

progressed a bit.) The medicine she receives is the once-controversial drug

Tysabri. Her doctor is the well-known (in Atlanta circles anyway)

neurologist, Doug Stuart. His father, Stuart, founded the M.S.

Clinic.

Isn't Wheldon the doctor in England whose wife had M.S.? I communicated with

him via email a couple of times. (I've also spoken on the phone with someone

in Stratton's office.) , my daughter, was tentatively diagnosed with

S.D. by a rheumy whose name I've forgotten; but he was so unsure and surprised

at his diagnosis that he referred us to Dr. Silver, a renowned rheumatologist at

the University of S.C. Medical School, to make sure his diagnosis was correct.

She underwent a battery of tests; we spent an entire day there. And, of

course, it was a depressing final answer that Dr. Silver gave us. After that,

we found Dr. ph Sentef in Dalton, Georgia, who seemed to offer some hope

with the AP. We eventually were put in contact with Dr. , a

rheumatologist in Atlanta. We don't have to drive so far to see him, and he

accepts 's Medicaid and Medicare coverage and fully endorses the AP.

How old is your daughter, Cheryl? will be 40 in September. She

was officially diagnosed with multiple sclerosis twenty years ago this coming

February, and the S.D. presented its ugly head in 2000. Still, all things

considered, we think of ourselves as pretty lucky. There are so many other

predicaments, diseases, you name it, that plague millions of poor souls and can

be far more devastating. So far, we've managed to keep it at a minimum of two

fairly common ones.

It's a struggle, of course. Let me know more, if you feel like communicating

with me. And you can write to me privately if you prefer.

Thank you for taking an interest in my daughter's condition.

Ellen

rheumatic Thank you all so much

>

> Wow, I really did it. I really recovered from this awful, painful,

> disabling

> disease. The one that my first doctor said I would die from, and that

> subsequent doctors said I would never recover from. It was a long, hard

> journey back, but so awe inspiring what the body can accomplish when given

> what it needs, and so worth it to have another shot at life and all good

> things. I am so humbled and so very very grateful to this group beyond

> words- I would never have found out about this treatment and believed in it

> without all of you who have gone before me. From all of you and your

> stories

> I was able to hold on to the strength and courage I needed to stay on this

> path without acceding to the threats and intimidations of doctors who

> didn't

> believe. I am still so young, and there is Life again, and joy and love and

> fun and opportunities, and everything I was missing for so long is coming

> back or already has returned.

>

> Thank you Thank you Thank you Thank you

>

> I hope everyone still on the journey will get here too.

>

>

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Guest guest

Ellen:

I did assume that you were aware of the potential AP/MS connection-just wanted

to make sure.

My daughter is 20, she was diagnosed at age 16. She is well now and SD isn't

really much more than a distant memory.

I hope that your daughter's treatments off some relief and positive effects

soon.

Cheryl

Sent from my Verizon Wireless BlackBerry

Re: rheumatic Thank you all so much

Hi, Cheryl,

So much has happened over the last 5 years, including a replacement hip

operation for my daughter, surgery to implant a Baclofen pump, and thyroid

surgery. Gosh, I know I'm forgetting something. (There were some minor

surgeries, one of which was to implant a vena cava filter.) But what I'm

trying to say is that we've put Stratton and any other alternative protocols on

hold to take care of other problems. Also, my daughter is a patient now at

the M.S. Clinic of Atlanta and receives an I.V. infusion once a month. We

won't be using any other medications unless and until we feel that what we're

doing is fruitless. (So far, the M.S. remains unchanged - it even has

progressed a bit.) The medicine she receives is the once-controversial drug

Tysabri. Her doctor is the well-known (in Atlanta circles anyway)

neurologist, Doug Stuart. His father, Stuart, founded the M.S.

Clinic.

Isn't Wheldon the doctor in England whose wife had M.S.? I communicated with

him via email a couple of times. (I've also spoken on the phone with someone

in Stratton's office.) , my daughter, was tentatively diagnosed with

S.D. by a rheumy whose name I've forgotten; but he was so unsure and surprised

at his diagnosis that he referred us to Dr. Silver, a renowned rheumatologist at

the University of S.C. Medical School, to make sure his diagnosis was correct.

She underwent a battery of tests; we spent an entire day there. And, of

course, it was a depressing final answer that Dr. Silver gave us. After that,

we found Dr. ph Sentef in Dalton, Georgia, who seemed to offer some hope

with the AP. We eventually were put in contact with Dr. , a

rheumatologist in Atlanta. We don't have to drive so far to see him, and he

accepts 's Medicaid and Medicare coverage and fully endorses the AP.

How old is your daughter, Cheryl? will be 40 in September. She

was officially diagnosed with multiple sclerosis twenty years ago this coming

February, and the S.D. presented its ugly head in 2000. Still, all things

considered, we think of ourselves as pretty lucky. There are so many other

predicaments, diseases, you name it, that plague millions of poor souls and can

be far more devastating. So far, we've managed to keep it at a minimum of two

fairly common ones.

It's a struggle, of course. Let me know more, if you feel like communicating

with me. And you can write to me privately if you prefer.

Thank you for taking an interest in my daughter's condition.

Ellen

rheumatic Thank you all so much

>

> Wow, I really did it. I really recovered from this awful, painful,

> disabling

> disease. The one that my first doctor said I would die from, and that

> subsequent doctors said I would never recover from. It was a long, hard

> journey back, but so awe inspiring what the body can accomplish when given

> what it needs, and so worth it to have another shot at life and all good

> things. I am so humbled and so very very grateful to this group beyond

> words- I would never have found out about this treatment and believed in it

> without all of you who have gone before me. From all of you and your

> stories

> I was able to hold on to the strength and courage I needed to stay on this

> path without acceding to the threats and intimidations of doctors who

> didn't

> believe. I am still so young, and there is Life again, and joy and love and

> fun and opportunities, and everything I was missing for so long is coming

> back or already has returned.

>

> Thank you Thank you Thank you Thank you

>

> I hope everyone still on the journey will get here too.

>

>

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