Greetings

[Guest guest]

Nora

Welcome aboard, you sound like you will fit right in. Experience not required,

although you sound like you have plenty!

Greetings

Hi All,

I found out about this group from the kefir group that

I belong to and thought that this might be a better

fit for me. I have a long love affair with fermented

foods, although many of the ones mentioned on this

site are not familiar to me at all - so I am expecting

to learn quite a lot. My fermenting experience

includes sourdough bread, kimchee, yogurt (soy now,

and dairy in the past) sauerkraut and other lactic

fermented veggies, tempeh, and I am now fermenting my

first batch of miso which will be ready some time next

year!

I live in New York City.

Nora

__________________________________________________

[Guest guest]

Hello , I would have written the same intro, so I know I will enjoy

this group also.

Signed Audrey

[Guest guest]

" If you can offer any help on kefir I would appreciate it.

I ordered a starter kit to begin with. I will have to use grocery store milk. "

You can use store bought milk, but you have to make sure it is not

ultra-pasteurized, regular pasteurization is fine. The ultra-pasteurized milk is

so destroyed that there aren't enough nutrients for the kefir to live on. Beware

of organic milk, because a lot of that is ultra-pasteurized! Just read the label

carefully.

-Olif

[Guest guest]

--- Fogg <slfogg2000@...> wrote:

> Date: Sat, 16 Sep 2006 19:42:27 -0700 (PDT)

> From: Fogg <slfogg2000@...>

> Subject: Greetings

> aspergersupport

>

> Hi,

> I'm mostly a lurker here but wanted to share a

> positive thing in my ds life. was dx'd AS at

> abpit age 7 after quite of few years of trying to

> figure out what made this cute, sensitive kid but

> quirky kid tick.

> Anyway, now 11 and in the 5th grade (middle

> school here) has been in school just two weeks and

> confesses that on the second day was having

> difficulty

> keeping things together emotionally. He obviously

> has

> been feeling stressed and overwhelmed. his Language

> Arts teacher demands alot of writing! We are in for

> trouble. He has a great imagination but struggles

> to

> get it on paper. It can take hours to get just a

> few

> sentences on paper.

> We are going to have a team mtg. next week to meet

> the

> teachers and all get on the same page. In the

> meantime I had mentioned the Alpha Smart to my

> husband

> who is also AS. He mentioned it to the emotional

> support person on Thurs. when gelling up a mtg.

> time.

> The school has an Alpha smart, tried it w/him on

> Fri.,

> sent it home and...

> My son is JOYFULLY working on his writing

> assignments!!! I quietly warched him with this huge

> grins on his face as he worked. This caused tears

> to

> flow from my eyes. For once they were tears of

> happiness for him.

> I'm hoping that this is a key to unlocking his

> frustrations at least on this level.

> Anyone else have a child using this for school?

>

> from PA

>

>

> Tai Shan

>

> __________________________________________________

>

[Guest guest]

In a message dated 9/17/2006 6:22:46 PM Eastern Daylight Time,

slfogg2000@... writes:

Tai Shan

Just curious is this your name? There is a baby panda in DC named Tai Shan.

Can you tell I'm a panda lover? Pam

[Guest guest]

>Hi Phoenix and welcome to this group.

Like you, I am fairly new to it, but not to illness, having had ME/CFS

for many years, recently diagnosed by blood test as Lyme.

I live in the UK, so I can't help you with doctors,or with US herb

suppliers, though I am using www.iherb.com for some of them because

it's cheaper than here, even given postage. I am just completing my

first of 3 months of Doxycycline [100mg x3], with Diflucan to control

worsening of my yeast/candida problem. I am taking the herbs in the

core protocol [except, for the moment, using samento instead of cats

claw]+ eleuthero, smilax and, for one month, artemisia.I have not yet

built up to full dose of all the herbs.

I intend to continue the herbs after the 3 months of Doxy.

So far I am feeling an intensification of some of my normal symptoms,

particularly great fatigue, with worse muscle pain and weakness and am

obviously hoping that this is a sign that something is working!

I think it is important to go to the toilet each day [i'll spare you

the details!!] and I take some binding substances to help carry the

rubbish out rather than recycle it [i use a cracked cell chlorella and

a mixture of clay, apple pectin and psyllium husks- the smilax is also

supposed to help in this way.

I wish you well and look forward to hearing about your progress,

Carolyn

> Greetings-

> I am new to the groups so I thought I would introduce

> myself. My name is Phoenix and I believe I have been living with

> lyme for about 18 years. Unfortunately when I was a child they just

> were not as good at diagnosing lyme and since my rash did not have a

> ring around it my Dr thought it must be the flue. My mom and I both

> thought it was lyme because my symptoms did not resolve and we live

> in an endemic area and pull 2-6 ticks off a day in the summer. I was

> not testes until a bad flare up 7 years ago that forced me to take

> time off from college. The test was negative so I was told I had

> Rheumatoid Arthritis, but I knew it was incorrect because I

> repeatedly tested negative for the RA antibody and it did not explain

> my spectrum of lyme symptoms (fatigue, dizziness, loss of balance,

> humming in my ears). Eventually that flare up slowly went away over

> about a year, but I always have some symptoms.

> Currently I am one year into my second big flare up which has

> forced me to stop working. Happily I am getting treatment finally

> and hope to go back to work soon. I am seeing a good neurologist

> locally who diagnosed me based on my symptoms, despite the negative

> test results. Further evidence of lyme is that doxycycline has

> resulted in major improvements in symptoms, health and energy. I

> felt better and could thing clearer than I had felt since I was a kid

> and got sick! But when I went off of doxycycline after 6 months my

> symptoms returned rapidly. Clearly I need to do more.

> I first learned about Buhner's book a year ago from my father

> who also has a stubborn case of lyme. We thought about following it

> then, but decided that our symptoms at the time were so sever that we

> could not understand it well enough. Now that we both have seen some

> results from doxycycline I have reread the book and am interested in

> starting the protocol soon. Happily my neurologist is supportive;

> she hopes I will do the herbs and doxycycline together and that they

> might work synergistically. I am a bit reluctant though to do the

> whole program with out the guidance of an expert. I noticed a list

> of Drs on Buhner's web sight that do the protocol. I was thinking of

> contacting the one in Mystic Conn since they would be the closest.

> Here are my big questions: Has any one found a source for the

> Andrographis 400mg standardized to 10% andrographolids? I hope this

> is not too controversial to ask, but has any one done the program

> long enough to go off treatment, and were there symptoms resolved?

> Thanks.

> Phoenix

>

[Guest guest]

-

Hello There!

Thanks for sharing your success with the cleanses. I have done some

parasite cleansing. However, I did not proceed with the liver or gall

bladder flush because years ago, I was told I had some large gall

stones that could get stuck somewhere, rather than coming out and I

could be much worse off, maybe in a lot of pain (which I don't have

now) - although my gall bladder could be full of stones.

Does anyone know how I should deal with this? Is there a way to

soften or break up the stones first, to prevent a problem occurring in

the middle of a flush where a stone gets stuck? Is there a danger

with doing the flush?

Thanks,

Tammy

-- In Dr , " xairai18 " <xairai18@...> wrote:

>

> Hello. I'm 32, and when I was 20 I was diagnosed with FMS and later

> MS. I lived in pain and misery for 6 and a half years. All of my

> symptoms have been gone for almost 6 years. Either I was misdiagnosed,

> or I cured this by learning Dr. 's theory. I felt like 85% better

> in the first day of starting the parasite cleanse. Although

> sells products, I didn't use hers, I used a product called Paragone,

> which has the three herbs she stresses in it. I cleansed for two

> weeks, then did her liver flush. Cleansed two more weeks, then flushed

> again, then just flushed every two weeks for like 3 months. Now I do

> the whole procedure once a year. I absolutely hate the flush part, but

> find it's really not as bad as it seems...I'm thankful that it took

> away my migraines, painful shoulder, painful ab, thigh, shakes, boils,

> insomnia, irregularity, and armor feeling. Probably more that I'm

> missing...

>

> http://www.drhuldaclark.org/therapy_liver.asp

>

[Guest guest]

To soften " gallstones " , Hulda told us to drink " raw, unfiltered " apple

cider, and drink epsom salts to soften these stones. (The salts are part of

her

liver flush...)

I say " gallstones " , because this is an INACCUATE medical term. They are

really LIVERstones, that have grown so large that they have begun to calcify.

As the liver tries to expel them, they get caught in the gall bladder. This

can be very painful.

I would finish the cleansing process, if you want relief from these stones.

TIP: While you're doing the 4 week kidney cleanse (which comes before the

Liver flush), drink the apple cider everyday.

Good luck.

Nina

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

You can juice some organic apples and drink that daily or take malic acid

tablets. I have heard (not ever used) gold coin grass, a chinese herb, that

will also soften and crush gallstones. A web search will provide more info.

Diane

Re: greetings

-

Hello There!

Thanks for sharing your success with the cleanses. I have done some

parasite cleansing. However, I did not proceed with the liver or gall

bladder flush because years ago, I was told I had some large gall

stones that could get stuck somewhere, rather than coming out and I

could be much worse off, maybe in a lot of pain (which I don't have

now) - although my gall bladder could be full of stones.

Does anyone know how I should deal with this? Is there a way to

soften or break up the stones first, to prevent a problem occurring in

the middle of a flush where a stone gets stuck? Is there a danger

with doing the flush?

Thanks,

Tammy

-- In Dr , " xairai18 " <xairai18@...> wrote:

>

> Hello. I'm 32, and when I was 20 I was diagnosed with FMS and later

> MS. I lived in pain and misery for 6 and a half years. All of my

> symptoms have been gone for almost 6 years. Either I was misdiagnosed,

> or I cured this by learning Dr. 's theory. I felt like 85% better

> in the first day of starting the parasite cleanse. Although

> sells products, I didn't use hers, I used a product called Paragone,

> which has the three herbs she stresses in it. I cleansed for two

> weeks, then did her liver flush. Cleansed two more weeks, then flushed

> again, then just flushed every two weeks for like 3 months. Now I do

> the whole procedure once a year. I absolutely hate the flush part, but

> find it's really not as bad as it seems...I'm thankful that it took

> away my migraines, painful shoulder, painful ab, thigh, shakes, boils,

> insomnia, irregularity, and armor feeling. Probably more that I'm

> missing...

>

> http://www.drhuldaclark.org/therapy_liver.asp

>

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.446 / Virus Database: 268.18.12/724 - Release Date: 3/16/2007

12:12 PM

[Guest guest]

It is my belief that these large stones are actually many small ones stuck

together. I have passed one maybe the size of a quarter, and none in which got

stuck, thanks to the epsolm salts.

Diane Mackey <dmackey00@...> wrote: You can juice some organic

apples and drink that daily or take malic acid tablets. I have heard (not ever

used) gold coin grass, a chinese herb, that will also soften and crush

gallstones. A web search will provide more info.

Diane

Re: greetings

-

Hello There!

Thanks for sharing your success with the cleanses. I have done some

parasite cleansing. However, I did not proceed with the liver or gall

bladder flush because years ago, I was told I had some large gall

stones that could get stuck somewhere, rather than coming out and I

could be much worse off, maybe in a lot of pain (which I don't have

now) - although my gall bladder could be full of stones.

Does anyone know how I should deal with this? Is there a way to

soften or break up the stones first, to prevent a problem occurring in

the middle of a flush where a stone gets stuck? Is there a danger

with doing the flush?

Thanks,

Tammy

-- In Dr , " xairai18 " <xairai18@...> wrote:

>

> Hello. I'm 32, and when I was 20 I was diagnosed with FMS and later

> MS. I lived in pain and misery for 6 and a half years. All of my

> symptoms have been gone for almost 6 years. Either I was misdiagnosed,

> or I cured this by learning Dr. 's theory. I felt like 85% better

> in the first day of starting the parasite cleanse. Although

> sells products, I didn't use hers, I used a product called Paragone,

> which has the three herbs she stresses in it. I cleansed for two

> weeks, then did her liver flush. Cleansed two more weeks, then flushed

> again, then just flushed every two weeks for like 3 months. Now I do

> the whole procedure once a year. I absolutely hate the flush part, but

> find it's really not as bad as it seems...I'm thankful that it took

> away my migraines, painful shoulder, painful ab, thigh, shakes, boils,

> insomnia, irregularity, and armor feeling. Probably more that I'm

> missing...

>

> http://www.drhuldaclark.org/therapy_liver.asp

>

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.446 / Virus Database: 268.18.12/724 - Release Date: 3/16/2007 12:12

PM

[Guest guest]

Gold coin grass ( chinese herb). Mentioned before.

Apple cider Vinegar ( or green apples) contain Malic Acid which

softens stones.

Epsom Salts relaxes Bile ducts, soften stones and keps Sulphation

pathways in the liver opened.

And Phyllanthus (otherwise known as " Stone Breaker " ) is excellent for

crushing gallstones.

Take ur pick.

[Guest guest]

Hi There, How long do you think you have to take Malic Acid before your stones

get smaller. I know I'm loaded with stones and would like out of ugg some fear

of doing the cleanse, I'd like to take malic acid for a wk or month before

cleanse? Does anyone know?? Thanks for your help or ?? on the matter. Sharon

http://www.thebiblesite.org/

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

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

[Guest guest]

Sharon,

I don't know the exact answer to your question, but I took malic acid for one

week, 3x a day before my third liver cleanse and I didn't have any problems, and

got out quite a few calcified stones.

Diane

Re: greetings

Hi There, How long do you think you have to take Malic Acid before your stones

get smaller. I know I'm loaded with stones and would like out of ugg some fear

of doing the cleanse, I'd like to take malic acid for a wk or month before

cleanse? Does anyone know?? Thanks for your help or ?? on the matter. Sharon

http://www.thebiblesite.org/

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

Food fight? Enjoy some healthy debate

in the Answers Food & Drink Q & A.

[Guest guest]

Thanks Diane. I've been wanting to do this for over 5 yrs. I'm finally gonna do

it. First the Parasite cleanse starting this wk. Then do I really need to do a

kidney cleanse?? Or can I just drink some parsley water? Then do the liver

cleanse every two wks until you don't see any more stones? Can this be harmful

to a fatty liver or possible cirrhosis? Thanks these will be my last questions

for a while. Blessings, Sharon

http://www.thebiblesite.org/

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

It's here! Your new message!

Get new email alerts with the free Toolbar.

[Guest guest]

Sharon,

If you have a fatty liver or cirrhosis, then be sure you do the parasite and

colon cleanse at least two weeks before the liver cleanse, and drink lots of

organic, freshly juiced apples during this time. I don't know enough about

either disease to guide you personally, but you can check on curezone.com under

the liver cleanse forums, or the Ask s forum to seek advice if you have

either issue before you do the liver cleanse.

Diane

Re: greetings

Thanks Diane. I've been wanting to do this for over 5 yrs. I'm finally gonna

do it. First the Parasite cleanse starting this wk. Then do I really need to do

a kidney cleanse?? Or can I just drink some parsley water? Then do the liver

cleanse every two wks until you don't see any more stones? Can this be harmful

to a fatty liver or possible cirrhosis? Thanks these will be my last questions

for a while. Blessings, Sharon

http://www.thebiblesite.org/

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

It's here! Your new message!

Get new email alerts with the free Toolbar.

[Guest guest]

Thanks again Diane, Blessings, Sharon

http://www.thebiblesite.org/

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

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

[Guest guest]

What is the date of the conference??

<<Essential Oils Training Reminder

Start Time:

11:00 AM Central Std Time

End Time:

12:25 PM Central Std Time or so.

Dial-in Number:

1-517-417-5000 (Midwest)

Participant Access Code:51254

KC

[Guest guest]

Melynda,

Thanks. It means a lot coming from someone that I know has more than

their share of pains.

I hope you have had a good day yourself.

Shirley

-- In , Melynda Gamez <melyndagamez@...>

wrote:

>

> HOPE ALL OF U HAVE AN AWESOME & GREAT DAY!!! GOD BLESS,MELYNDA GAMEZ

11/13/08

>

>

> P.S. HOPE UR PAIN FREE AS WELLLLLLLLL................

>

>

>

>

>

[Guest guest]

Ms. NieeMA ( I assume it's Ms. , forgive me if it is not ), I regret that

the thread that caused this post to me is missing because I'm trying to be

careful, can't remember what I may have posted that would cause this reply

from you, have been posting since early 1990's and haven't had such a

response so I'm surprised.

And this is no challenge, but would you be good enough to send me a copy of

my post, please, I'm curious what I did? Obie.

___________________________________________________________________

This is not a warning...just some information that might be helpful.

If you send emails to people that have not asked you to, that person

can report you to and you will lose your account. The aasame

goes for Gmail and others as well!

Soooo be very mindful of what you are doing!

NieeMA

[Guest guest]

Welcome ,

Your story, and our collective stories have variations, but are all so similar, wish they weren't, but they are. In all this there is luck, you've come along at a time period, where information is plentiful, there is good support, and doc's doing this work are available, at least regionallly for opinions.

To have scoliosis come back and bite you in the a*# again all these years later, sucks. Some of us have a long painful decline, some just a matter of months. Mine was years and years, and I began falling apart back in the 80's( my harrington was placed in 73), and I saw 20 some doctors over a 15 year period, till I got to my surgeon in 2000, and got my Flatback diagnosis, and needed surgery to get me better. I had no idea to look on the internet back in 2000 before I knew what was wrong, once diagnosised, I jumped on, joined groups, and began a process of learning, and being a support that continues today.

I know when reading the material, it all seems very scary. When I was reading back in 2000, it all seemed very grim, and truly there were no good stories out there. For me, I just couldn't live the way I was anymore, I couldn't walk but a few feet, I couldn't stand for more than just a few moments. I knew where every bench was in town. Everyday things took planning. I was laying down on the couch more than I was up. When I was up, I was bent in half like a lawn chair, and hurt. All those many doc's I saw, basically told me to learn to live with it, nothing could be done or should be done. Well they were wrong, and I had the gumption to keep search for answers and I'm glad I did.

If you go to the main page of the site, look in the FILES section, you'll see the writings of Mina, and Scoliosis Overcompensation Syndrome is listed there, her points in that article fit me, and I bet most of us to a T.

My suggestion is grab a cup coffee, sometime when you have a peaceful hour, and start in the FILES section, and just read. Cam the group owner has put there information that it would take you days to find on the internet, all layed out, amazing. With this condition it's best to be a scholar, as an informed patient makes a patient who has choices. Information is power.

Next after you wrap your brain around all this is a plan of action. When you are ready. I was ready yesterday, as I lived with Flatback for 15 plus years, some have to gradually adjust to hearing that they may face another big surgery and recovery in order to get better.

Once there, it's getting to a doc that does this work often. Two options, first go to the Scoliosis Research Society page( google it) and look for a doc either in state or local in the physican locator on the site. You will be looking for key terms in the description such as, ADULT, DEGENERATIVE. When calling, I'd ask to speak to the doc's assistant, and ask for their experience with Flatback syndrome, and post Harrington Rod patients.. Second you can let us know where you are at, and we could suggest doc names for an opinion.

When you get to a doc who gets us, then you can see just what is up with YOU, and what is possible. There are coping skills that help many with the pain, PT, massage, injections, pain mgt, swimming etc. Many of us here eventually had revision surgery to get us structurally corrected, and for me, feeling and looking dramatically better. Takes a lot of time and energy, but so worth it, to be living my life, not sitting on the sidelines.

So do let us know where you are, and we will give some suggestion. Know you are among friends with a common battle, we get it, we live it, and will do our level best to be of support.

Colorado Springs

[ ] greetings

Hi, All!

I just joined this group today, and thought I'd jump right in with an introduction message.

My scoliosis was diagnosed at age 12, and after 4 years of bracing (with ups and downs in success), I went ahead with a Harrington rod operation at age 16. I had two large curves - an "S" - one nearly 50 degrees, and the other about 55 degrees. I was told at the time that the top curve was positioned such that it would crowd out my heart and lungs and that I would die by internal suffocation or heart attack by age 20 if I did not have the surgery. With that cheerful news, I moved ahead with the surgery.

The surgery went fairly well; there was some correction. I was fortunate in that the curves were so evenly balanced that they nearly matched in size, which helped in many ways.

This all happened in 1983.

Now I am 43, and am having significant back pain every day and every night. When wondering why I'm so tired all the time, I suddenly realized that I don't remember the last time I slept through the night...there is lots of tossing and turning due to back pain. I have left hip issues (looks like a lot of people on this list do!), varicose veins, limited lung capacity, and various other subtle symptoms that people around me don't see.

About a year ago, I had x-rays done after years of completely ignoring the scoliosis. When looking at the x-ray report, I went hazy after seeing the word "degenerative" for the fourth time. I've tried to initiate Harrington rod research on the internet several times, and each time I read even a little about what seems to be in store for those of us who are in this position, I have to admit that I freak out, begin to cringe, and literally have to turn off the computer. It seems that very few people have scoliosis to the extent that I (we) do, and it is definitely treated as the aberration rather than the norm.

I'm not sure where to go next. The pain, at this point, is debilitating on some days to the point that it hurts to carry my purse. Lifting anything or stooping are out of the question. Still, I have a family with young children and I need to be functional. I hesitate to go to a "regular" doctor and waste money; they never seem to have any idea what severe scoliosis entails.

Well, thanks for witnessing my re-emergence into the land of recognizing scoliosis. Has anyone out there heard of Scoliosis Overcompensation Syndrome? I've found it to be a very useful idea in managing symptoms, both inner an outer.

Thanks for listening!

[Guest guest]

,

When you say hip issues, are you being treated for that, or is it a symptom? While we do have gals with hip issues( a few have had hip replacements too) hip and leg pain can be a product of our back problems. My greatest symptom was hip and upper thigh pain, on the right side. Stenosis caused that pain, and my decompression surgery relieved it.

Would be interesting to hear just what your hip issues are.

Colorado Springs

[ ] greetings

Hi, All!

I just joined this group today, and thought I'd jump right in with an introduction message.

My scoliosis was diagnosed at age 12, and after 4 years of bracing (with ups and downs in success), I went ahead with a Harrington rod operation at age 16. I had two large curves - an "S" - one nearly 50 degrees, and the other about 55 degrees. I was told at the time that the top curve was positioned such that it would crowd out my heart and lungs and that I would die by internal suffocation or heart attack by age 20 if I did not have the surgery. With that cheerful news, I moved ahead with the surgery.

The surgery went fairly well; there was some correction. I was fortunate in that the curves were so evenly balanced that they nearly matched in size, which helped in many ways.

This all happened in 1983.

Now I am 43, and am having significant back pain every day and every night. When wondering why I'm so tired all the time, I suddenly realized that I don't remember the last time I slept through the night...there is lots of tossing and turning due to back pain. I have left hip issues (looks like a lot of people on this list do!), varicose veins, limited lung capacity, and various other subtle symptoms that people around me don't see.

About a year ago, I had x-rays done after years of completely ignoring the scoliosis. When looking at the x-ray report, I went hazy after seeing the word "degenerative" for the fourth time. I've tried to initiate Harrington rod research on the internet several times, and each time I read even a little about what seems to be in store for those of us who are in this position, I have to admit that I freak out, begin to cringe, and literally have to turn off the computer. It seems that very few people have scoliosis to the extent that I (we) do, and it is definitely treated as the aberration rather than the norm.

I'm not sure where to go next. The pain, at this point, is debilitating on some days to the point that it hurts to carry my purse. Lifting anything or stooping are out of the question. Still, I have a family with young children and I need to be functional. I hesitate to go to a "regular" doctor and waste money; they never seem to have any idea what severe scoliosis entails.

Well, thanks for witnessing my re-emergence into the land of recognizing scoliosis. Has anyone out there heard of Scoliosis Overcompensation Syndrome? I've found it to be a very useful idea in managing symptoms, both inner an outer.

Thanks for listening!

[Guest guest]

Hi, !

I can't tell you how much this warm and welcoming greeting did for me. I actually printed it out so I could show it to my husband and reread it. Thank you!!!

By hip issues, I mean pain from the juncture between pelvis and thigh bones, where the bones actually nearly touch where they are supposed to be separated. This is due to the overall misalignment of the torso, I'm told. I creates pain when walking, sitting in certain positions,etc. And now that I'm over 40, it happens a lot more often. The only doctors who have addressed it say only that I'm lucky it's not a lot worse. I've never been sure what to do with that response. Maybe I just wait until it's really bad and then take pain medication? That seems too "doomsday" - so so far I haven't done anything about it.

Looking forward to more great info,

From: Kirkaldie <.Kirkaldie@...>Subject: Re: [ ] greetings Date: Monday, November 2, 2009, 6:41 AM

,

When you say hip issues, are you being treated for that, or is it a symptom? While we do have gals with hip issues( a few have had hip replacements too) hip and leg pain can be a product of our back problems. My greatest symptom was hip and upper thigh pain, on the right side. Stenosis caused that pain, and my decompression surgery relieved it.

Would be interesting to hear just what your hip issues are.

Colorado Springs

[ ] greetings

Hi, All!

I just joined this group today, and thought I'd jump right in with an introduction message.

My scoliosis was diagnosed at age 12, and after 4 years of bracing (with ups and downs in success), I went ahead with a Harrington rod operation at age 16. I had two large curves - an "S" - one nearly 50 degrees, and the other about 55 degrees. I was told at the time that the top curve was positioned such that it would crowd out my heart and lungs and that I would die by internal suffocation or heart attack by age 20 if I did not have the surgery. With that cheerful news, I moved ahead with the surgery.

The surgery went fairly well; there was some correction. I was fortunate in that the curves were so evenly balanced that they nearly matched in size, which helped in many ways.

This all happened in 1983.

Now I am 43, and am having significant back pain every day and every night. When wondering why I'm so tired all the time, I suddenly realized that I don't remember the last time I slept through the night...there is lots of tossing and turning due to back pain. I have left hip issues (looks like a lot of people on this list do!), varicose veins, limited lung capacity, and various other subtle symptoms that people around me don't see.

About a year ago, I had x-rays done after years of completely ignoring the scoliosis. When looking at the x-ray report, I went hazy after seeing the word "degenerative" for the fourth time. I've tried to initiate Harrington rod research on the internet several times, and each time I read even a little about what seems to be in store for those of us who are in this position, I have to admit that I freak out, begin to cringe, and literally have to turn off the computer. It seems that very few people have scoliosis to the extent that I (we) do, and it is definitely treated as the aberration rather than the norm.

I'm not sure where to go next. The pain, at this point, is debilitating on some days to the point that it hurts to carry my purse. Lifting anything or stooping are out of the question. Still, I have a family with young children and I need to be functional. I hesitate to go to a "regular" doctor and waste money; they never seem to have any idea what severe scoliosis entails.

Well, thanks for witnessing my re-emergence into the land of recognizing scoliosis. Has anyone out there heard of Scoliosis Overcompensation Syndrome? I've found it to be a very useful idea in managing symptoms, both inner an outer.

Thanks for listening!

[Guest guest]

,

Welcome to the group. It is a little bit like going through Alices looking glass

when you all of a sudden find your self amongst this group of the few

(relatively) folks on the planet that understand exactly what you are going

through. Many of us were under the impression that we had tamed this monster

years ago, and it is downright startling to find that it is going to once again

take center stage in your life.

For the most part, usually once we finally get ourselves to very competent

medical help, we are told that whatever is wrong is not life threatening nor

something that needs to be addressed in an immediate fashion. Yes, to us

patients it feels like an emergency when we cant stand to make dinner or attend

a family function....but in reality you more than likely still have the gift of

time.

So take a breath and my advice is to start educating yourself to what your

condition is, what the fix is, what the outcomes are, and which doctors you will

seek an opinion from. As said, the Scoliosis Research Society

(www.srs.org) has a Physician locator on it. This particular society demands

that its membership devote a signifigant part of their practice to deformity

surgery...and you are unlikely to find a surgeon there who will not recognize

what the possibilities are for you. I would expect that unless you have other

underlying issues you are not going to get that " deer in the headlights " look

from the doctor, nor are you going to hear that you must live with this forever.

You may hear, however, that you might be better served waiting longer...or your

insurance company may insist that you jump through a variety of noninvasive

hoops before they will consider surgery. In fact...this is probably not a bad

thing, because as bad as you feel now, should you elect to undergo surgery, you

will feel pretty awful, in other ways, for awhile. The recovery is really quite

lengthy.

Hopefully you can find some help in managing your pain and strengthen yourself

in the meantime...and more than anything...you can learn from us.

Where in the country do you live?

Take Care, Cam

[Guest guest]

Congratulations Basil great news keep it up.I tried gleevec break for 6 month

and I know the feeling enjoy your break

T

Sent from my Verizon Wireless BlackBerry

[ ] Greetings

Hi all fellow " club members "

I have not posted for ages so I will just keep it brief.

My health is still fine with my last result in January: " undetected "

Wow was I relieved at that!

After being PCRU since April 2005, I experienced some severe side effects. After

consultation with my Haematologist, I stopped taking Gleevec and discontinued

the treatment.

That was at the end of April 2009.

My PCRU status has not changed since then, and I am greatful for that.

Although I realize I am not cured of CML,should my test show an upward trend, I

will need to revert to medication.

The " holiday " has been great!

BTW: my last result was:

BCR-ABL 0.00013%

BCR-ABL/ABL Ratio 0.00000

My next test will be at the end of March 2010.

Holding thumbs!!!

Just thought I would share the good news with you all.

Best wishes all

Basil

[Guest guest]

Awesome news enjoy the break and life. Thanks for sharing

Anita

________________________________

From: " mtadros9@... " <mtadros9@...>

Sent: Thu, February 18, 2010 2:38:45 PM

Subject: Re: [ ] Greetings

Congratulations Basil great news keep it up.I tried gleevec break for 6 month

and I know the feeling enjoy your break

T

Sent from my Verizon Wireless BlackBerry

[ ] Greetings

Hi all fellow " club members "

I have not posted for ages so I will just keep it brief.

My health is still fine with my last result in January: " undetected "

Wow was I relieved at that!

After being PCRU since April 2005, I experienced some severe side effects. After

consultation with my Haematologist, I stopped taking Gleevec and discontinued

the treatment.

That was at the end of April 2009.

My PCRU status has not changed since then, and I am greatful for that.

Although I realize I am not cured of CML,should my test show an upward trend, I

will need to revert to medication.

The " holiday " has been great!

BTW: my last result was:

BCR-ABL 0.00013%

BCR-ABL/ABL Ratio 0.00000

My next test will be at the end of March 2010.

Holding thumbs!!!

Just thought I would share the good news with you all.

Best wishes all

Basil