my update

December 2, 2000

Kathy,

Great news, congratulations Best of luck,

December 4, 2000

Kathy-

Congratulations! Great news.

Diane

April 12, 2001

Joanne,

Thanks for sharing your good news!!!!

April

[ ] My update

Well...went for my three month check up last week....I am so happy. As you may remember I have PBC (Primary Biliary Cirrhosis) and have been taking Q10 150MG supplements for 5 months now and two months ago started taking the Epivir (used for Hep as researchers are thiniing it may be caued by a virus. I have been changed from a overlapping stage 3 to 4 down to a stage 2!!!!!!!!! : )) I am HAPPY!!! : )) My Albumin went up so it is almost now normal...my sed rate is over 10 points improved etc.... I can't go to the Convention in Las Vegas but am excited about what will be said...especially Dr Andy Mason on his thoughts of a viral cause...... I urge any of you that are able to go to get your reservations in to L9inie right off...remember they will be having segments on PSc and AIH etc this year..we are expanding every year. I think you will get a lot of good information there AND have a lot of fun.....not only are there the talks but social times and time to hop about Las Vegas and do whatever you want....play golf, go on rides, visit so many places there....stuff yourself silly and of course play the slot machines if you so desire. I am back on line.......with a new server...but am still working out the kinks here.. : ( AOL is so much easier BUT where I live it is so horribly slow....so am now on Earthlink.faster....but have to learn my way about.... Gee, i thought PBC was a challenge now I really found a challenge!!!!! So..please have patience with me. The LIBKS for LIVERSUPPORT_L on the PBCers web page are still not working.....wrote to Linie to let her know....... Joanne C. (PBC) LIVERSUPPORT_L Moderator

June 25, 2003

Jan,

This is wonderful news!!! God is Good!!! Thank you so much for the update

and sharing your personal story with us.

Hugs,

Dawn

June 26, 2003

i dont understand what treatments were and are being used. would like to know

what all the letters mean- - - FO/CC etc.

JanPM <pipersmama@...> wrote:Most of you know we are doing FO/CC as well

as IPT treatments (6 to

date once a week - but will now go every other week, then

maintenance). this is the update I sent our friends:

>It's been a very very tiring week at our house.

> has been so miserable and feeling like he was

>really losing ground. Everything was wrong....his

>back is out of whack, (probably something happened at

>the hospital, but the steroids masked the symptoms so

>long - now his back 'thinks' it belongs in the wrong

>place....). He has no appitite at all, and everything

>tastes or smells dreadful to him. he has had a

>continual headache that doesn't want to quit or

>respond to ibuprofin. He's just been miserable, weak,

>sick and very depressed about it all.....

>

>and.......

>

>His AMAS test just came back........

>

>and......

>

>anything under 100 is considered 'normal'.....

>

>and........

>

>his first test six weeks ago was 154......

>

>and....

>

>and......

>

>HIS TEST TODAY IS 57!!!!!!!!!!!!!!!!!!

>

>yes! fifty -seven! not one fifty seven...just plain

>old under one hundred....FIFTY-SEVEN!!!!!!!!!!

>

>THE DR. IS ESTATIC!!!! I AM ESTATIC - AND GEORGE

>still feels horrible.

>

>why??? we asked the dr. and were told that he is

>de-toxifing in a huge way - right now his body is

>working overtime to eliminate those chemicals he has

>been on, and to eliminate the dead cancer cells!

>

>So so far - the MRIs show all clear - the CT scans

>show 'no growth' and now the AMAS test shows no

>active cancer cells!

>

>Thank you for your prayers and love - please keep them

>coming we have a way to go to get complete remission

>and then keep him there (forever I hope!)

>

>Hugs, and God Bless, Jan

June 29, 2003

Luella,

Fo means Flaxseed oil and CC is cottage cheese. If you log onto the web site

www.getandstaywell.com and look at Bill s E Book on cancer alternative

treatments.

Ray

Re: [ ] My update

i dont understand what treatments were and are being used. would like to know

what all the letters mean- - - FO/CC etc.

JanPM <pipersmama@...> wrote:Most of you know we are doing FO/CC as well

as IPT treatments (6 to

date once a week - but will now go every other week, then

maintenance). this is the update I sent our friends:

>It's been a very very tiring week at our house.

> has been so miserable and feeling like he was

>really losing ground. Everything was wrong....his

>back is out of whack, (probably something happened at

>the hospital, but the steroids masked the symptoms so

>long - now his back 'thinks' it belongs in the wrong

>place....). He has no appitite at all, and everything

>tastes or smells dreadful to him. he has had a

>continual headache that doesn't want to quit or

>respond to ibuprofin. He's just been miserable, weak,

>sick and very depressed about it all.....

>

>and.......

>

>His AMAS test just came back........

>

>and......

>

>anything under 100 is considered 'normal'.....

>

>and........

>

>his first test six weeks ago was 154......

>

>and....

>

>and......

>

>HIS TEST TODAY IS 57!!!!!!!!!!!!!!!!!!

>

>yes! fifty -seven! not one fifty seven...just plain

>old under one hundred....FIFTY-SEVEN!!!!!!!!!!

>

>THE DR. IS ESTATIC!!!! I AM ESTATIC - AND GEORGE

>still feels horrible.

>

>why??? we asked the dr. and were told that he is

>de-toxifing in a huge way - right now his body is

>working overtime to eliminate those chemicals he has

>been on, and to eliminate the dead cancer cells!

>

>So so far - the MRIs show all clear - the CT scans

>show 'no growth' and now the AMAS test shows no

>active cancer cells!

>

>Thank you for your prayers and love - please keep them

>coming we have a way to go to get complete remission

>and then keep him there (forever I hope!)

>

>Hugs, and God Bless, Jan

June 29, 2003

It'll cost ya $14.95 to look at it though.

>Luella,

>

>Fo means Flaxseed oil and CC is cottage cheese. If you log onto the web site

www.getandstaywell.com and look at Bill s E Book on cancer alternative

treatments.

>

>Ray

--

neil@... <http://www.sumeria.net/>

" The Constitution of the Republic should make special provisions for medical

freedom as well as religious freedom. To restrict the art of healing to one

class of men and deny equal privileges to others will constitute the

Bastille of medical science. All such laws are un-American and despotic. "

-- Dr. Rush, Signer of the US Constitution

March 21, 2006

Sounds good Fran. Ask why you might not start with 35-50K of C and then

kick it up to 100K?

Did he/she give you a sound reason for the PET Scan? Let us in on it.

Joe C.

March 22, 2006

Frann,

That's AWESOME news! High Five!!!!

Beth

Frann wrote:

>Feeling very positive and he also confirmed no bone mets and the lymphs are

also perfect. I am just feeling great! Well thats my update.. Hope you'll are

doing fine too!! I truly am blessed. Frann

March 22, 2006

JCastron wrote:

>Ask why you might not start with 35-50K of C and then kick it up to 100K? Did

he/she give you a sound reason for the PET Scan?

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

Hi Joe,

I guess he wants me to meet with an oncologist just to hear what he/she has to

say and then they will order the pet scan, I am understanding it scans the full

body and will indentify any areas of suspicion. Dr P didn't give an exact amt of

the Vita C therapy to start just through those numbers out there.

Any objections to a pet scan?? should it be something I should do as a last

resort? I know the MRI isn't bad/dangerous for you, I had been told its actually

good for you.

Would love some other opinions here. The dr did however get on my case about

exercise, I HATE TO EXERCISE so I will avoid it at all costs. Don't truly know

why. Any feedback either way on that one? Thanks everyone, Frann

June 20, 2006

Jeanette, i take celebrex as mu anti-inflammatory because i have 3 ulcers

and celebrex is gentle on the stomach. i love my celebrex.

marsha

June 20, 2006

hi Jeanette,

i have at least 8 degenerated discs, 14 bulging discs, bone spurs, scar tissue,

a bit scoliosis, etc. one surgeon in Feb wanted to fuse 3/4 of my spine and

another wanted to fuse at least 2-3 levels in my neck. my family doctor said

NO! and got me into restorative yoga and Pain Reflex Release physical therapist

and i am virtually pain free. just came in from doing a morning of mowing and

weeding and playing ball with my dogs. i would be able to do many of the things

i love so dearly, including raising service puppy #10 in a few weeks, if my

spine was all fused. at least 2 other doctors besides mine told me they had

seen people with even worse backs who were mostly pain free and living an active

life.

i did chiro for years and finally decided it was not helping but the yoga and

the PRRT have been miracles for me.

fusion is the thing, it is what doctors know and want to do but so many people

have so many problems afterwards and with the extent of surgery recommended to

me, i would have no life.

Carlene in MT

My Update

Hi,

I haven't posted lately so to fill people in here's what has happened.

I was diagnosed with degenerative disks at L4/L5 and L5/S1. I went

through PT and Steroid epidural injections. Neither of them helped and

my surgeon recommeded fusion surgery that was scheduled for 7/10/06. I

have a desk job and was having problems making it through the day

because the pain would get really intense if I didn't get up and walk

every hour or so.

After posting here and finding out what others who had fusion have gone

through, ie. pain being the same or worse, not being as mobile, more

back problems further up now, I decided to cancel the surgery. I do

agility with my dog and am not willing to give that up if there are

possible alternatives to fusion.

I spoke to a friend who has 2 herniated disks I decided to get a second

opinion from her chiropractor who has been treating her for 4 years (the

cool thing is that this chiro works with a family doctor, so his

services are covered by my insurance as Physical Therapy). He said that

he's seen worse degeneration in patients who have never even considered

surgery and said that he believes that he can help reduce my pain. He

also said that if it didn't work, he wouldn't hesitate to send me back

to my surgeon to have the fusion surgery. He recommended doing electro

stim, chiropractic adjustments, deep tissue massage and traction to

lengthen the spacing for the disks which have been compressed. He said

that should reduce my pain. I've gone for 2 treatments and they do seem

to be helping. My back can tolerate me sitting at my desk for longer

periods of time although I do make a more concerted effort to get up and

walk around because that does seem to help.

All in all, I'm happy with my decision to cancel my surgery. I do need

to find a natural anti inflammatory I can take as the chiropractor did

recommend I take one. He has one he uses, but it's quite expensive and

you have to take a lot of it. I can't take NSAIDS due to stomach issues

so that rules out even ibuprofen.

Jeanette

November 9, 2010

I am glad you are pleased with your progress. I hope we both are able to make the next retreat. I want to copy your accent again!PeggySent from my Verizon Wireless BlackBerryFrom: "valerie_delaney" <vad61@...>Sender: Date: Tue, 09 Nov 2010 14:34:51 -0000< >Reply Subject: [ ] My Update Hi everyone,I am 6 months post-op off of revision. I had three surgeries (March 15, April 26 & May 5). I suffered some surgical complications but it was ultimately completed successfully after the 3rd surgery and I went to Rehab for two weeks before finally coming home on June 1. So my origional 2-day staged surgery really ended up being a 2 1/2 month ordeal! but it is behind me (thankfully!) and I am healing. I was able to wean off all meds by two months post-op, with an occassional Percocet if needed. I haven't had to take one in about 6 or 7 weeks now. My experience was hell. I wouldn't want to go through it again, but I would if I felt I had no other option. I have no regrets even though I do have residual issues. At 6 months post-op, my areas of major concern is:1. The neuropathy in my right leg and foot. 2. The occassional piriformus, hip and SI joint pains that I experience off and on.3. The consistent and constant knee pain that I am still experiencing.I would say at this point, my knees are my biggest issues. For any of you that are new to this group, I have been experiencing knee pain for several years. I was diagnosed with Pseudo-gout (horrible painful)in 2004 and osteoarthritis in both knees the following year. I have endured many cortisone shots, several anti-inflammatories (oral and topical) and ultimately endured bi-lateral knee arthroscopy in July 2009 in which the ortho performed 5 different procedures in each knee. This was all in anticipation for my revision. Unfortunately, my knee pain is now just as bad, if not worse than per-revision which I feel is truly inhibiting my revision recovery.With that said, Dr. Glazer understands all this and has agreed to PT (with my rheumotologists urging) for the purpose of strengthing my knees and legs only to see if this will help. I'm game. So far so good and the PT feels it is promising because for the first time in several years, she is finally able to do some manual modalities that she was unable to do before without flaring up the painful flatback symptoms. So I'm hopeful.I have returned to work (as of just last week) after being out for EIGHT months! I'm grateful they held my job and I am allowed to return on whatever schedule works for me. I do have a 45 minute car commute (each way) to work, so Dr. Glazer and I were both concerned about that. However......last week was a breeze! No problems at all. I only worked 10 hours over two days, but it was successful. This week I am attempting to work three days. Yesterday I even worked 6 1/2 hours with absolutely NO problems. I was mentally fatigued, but physically I felt fine. We'll see how it goes. Slow and steady wins the race and as I often repeat to myself (I believe it was Cam that told me this too! Gotta love Cam!) there is NO prize to the person who heals the fastest!! I happen to be a compliant person - I'm not even tempted to do anything I'm not supposed to and I rest when I need to. I know that unfortunately sometimes we hear from folks who are not where they would like to be int their recoveries, but some of us are. We need to know that there is good and bad in everything. Do I consider my surgeries to be a success? YOU BETCHA! Do I think my surgeon is better than others? NO!!! (although I DO think he is great!!)Do I think I was just lucky? PERHAPS. Am I symptom-free with no aches or pains? OBVIOUSLY NOT. But then again, I never expected to be. So at my 6 month post-op time, I'm happy. I am getting my life back a little more each day, each week, each month. I take what I can get. Do I wish I could sit here and say not only were my surgeries successful, but they went smoothly and it wasn't all that bad and that I am completely pain-free and live is just a bowl of cherries?? Yeah, I wish I could. But I truly understood going in that that wasn't realistic. I'm just little 'ol me, trying to make the best of my scoliatic body and trying to take each day as it comes. With a smile on my face! D (RI)

November 9, 2010

, Thank you so much for posting your recovery experience. It is helpful to hear when considering revision surgery. I wish your knees were better and hope the PT helps. Also wish you didn't have the other issues you do but appreciate your being honest in relating them. I am trying to get workers comp approval for my revision (as my fusions were as a result of a work injury) and your letter gives me more confidence that I'm on the right track. Take good care of yourself. Best. Kate

From: valerie_delaney

Sent: Tuesday, November 09, 2010 9:34 AM

Subject: [ ] My Update

Hi everyone,I am 6 months post-op off of revision. I had three surgeries (March 15, April 26 & May 5). I suffered some surgical complications but it was ultimately completed successfully after the 3rd surgery and I went to Rehab for two weeks before finally coming home on June 1. So my origional 2-day staged surgery really ended up being a 2 1/2 month ordeal! but it is behind me (thankfully!) and I am healing. I was able to wean off all meds by two months post-op, with an occassional Percocet if needed. I haven't had to take one in about 6 or 7 weeks now. My experience was hell. I wouldn't want to go through it again, but I would if I felt I had no other option. I have no regrets even though I do have residual issues. At 6 months post-op, my areas of major concern is:1. The neuropathy in my right leg and foot. 2. The occassional piriformus, hip and SI joint pains that I experience off and on.3. The consistent and constant knee pain that I am still experiencing.I would say at this point, my knees are my biggest issues. For any of you that are new to this group, I have been experiencing knee pain for several years. I was diagnosed with Pseudo-gout (horrible painful)in 2004 and osteoarthritis in both knees the following year. I have endured many cortisone shots, several anti-inflammatories (oral and topical) and ultimately endured bi-lateral knee arthroscopy in July 2009 in which the ortho performed 5 different procedures in each knee. This was all in anticipation for my revision. Unfortunately, my knee pain is now just as bad, if not worse than per-revision which I feel is truly inhibiting my revision recovery.With that said, Dr. Glazer understands all this and has agreed to PT (with my rheumotologists urging) for the purpose of strengthing my knees and legs only to see if this will help. I'm game. So far so good and the PT feels it is promising because for the first time in several years, she is finally able to do some manual modalities that she was unable to do before without flaring up the painful flatback symptoms. So I'm hopeful.I have returned to work (as of just last week) after being out for EIGHT months! I'm grateful they held my job and I am allowed to return on whatever schedule works for me. I do have a 45 minute car commute (each way) to work, so Dr. Glazer and I were both concerned about that. However......last week was a breeze! No problems at all. I only worked 10 hours over two days, but it was successful. This week I am attempting to work three days. Yesterday I even worked 6 1/2 hours with absolutely NO problems. I was mentally fatigued, but physically I felt fine. We'll see how it goes. Slow and steady wins the race and as I often repeat to myself (I believe it was Cam that told me this too! Gotta love Cam!) there is NO prize to the person who heals the fastest!! I happen to be a compliant person - I'm not even tempted to do anything I'm not supposed to and I rest when I need to. I know that unfortunately sometimes we hear from folks who are not where they would like to be int their recoveries, but some of us are. We need to know that there is good and bad in everything. Do I consider my surgeries to be a success? YOU BETCHA! Do I think my surgeon is better than others? NO!!! (although I DO think he is great!!)Do I think I was just lucky? PERHAPS. Am I symptom-free with no aches or pains? OBVIOUSLY NOT. But then again, I never expected to be. So at my 6 month post-op time, I'm happy. I am getting my life back a little more each day, each week, each month. I take what I can get. Do I wish I could sit here and say not only were my surgeries successful, but they went smoothly and it wasn't all that bad and that I am completely pain-free and live is just a bowl of cherries?? Yeah, I wish I could. But I truly understood going in that that wasn't realistic. I'm just little 'ol me, trying to make the best of my scoliatic body and trying to take each day as it comes. With a smile on my face! D (RI)

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.864 / Virus Database: 271.1.1/3246 - Release Date: 11/09/10 02:34:00

November 9, 2010

Peggy-

Ha! Ha! Ha! AND....we need Kathy White to come again so we can ALL confuse hte

heck out of her!!!

V~

>

> I am glad you are pleased with your progress. I hope we both are able to make

the next retreat. I want to copy your accent again!

>

> Peggy

>

> Sent from my Verizon Wireless BlackBerry

>

> [ ] My Update

>

> Hi everyone,

>

> I am 6 months post-op off of revision. I had three surgeries (March 15, April

26 & May 5). I suffered some surgical complications but it was ultimately

completed successfully after the 3rd surgery and I went to Rehab for two weeks

before finally coming home on June 1. So my origional 2-day staged surgery

really ended up being a 2 1/2 month ordeal! but it is behind me (thankfully!)

and I am healing. I was able to wean off all meds by two months post-op, with an

occassional Percocet if needed. I haven't had to take one in about 6 or 7 weeks

now. My experience was hell. I wouldn't want to go through it again, but I would

if I felt I had no other option. I have no regrets even though I do have

residual issues.

>

> At 6 months post-op, my areas of major concern is:

> 1. The neuropathy in my right leg and foot.

> 2. The occassional piriformus, hip and SI joint pains that I experience off

and on.

> 3. The consistent and constant knee pain that I am still experiencing.

>

> I would say at this point, my knees are my biggest issues. For any of you that

are new to this group, I have been experiencing knee pain for several years. I

was diagnosed with Pseudo-gout (horrible painful)in 2004 and osteoarthritis in

both knees the following year. I have endured many cortisone shots, several

anti-inflammatories (oral and topical) and ultimately endured bi-lateral knee

arthroscopy in July 2009 in which the ortho performed 5 different procedures in

each knee. This was all in anticipation for my revision. Unfortunately, my knee

pain is now just as bad, if not worse than per-revision which I feel is truly

inhibiting my revision recovery.

>

> With that said, Dr. Glazer understands all this and has agreed to PT (with my

rheumotologists urging) for the purpose of strengthing my knees and legs only to

see if this will help. I'm game. So far so good and the PT feels it is promising

because for the first time in several years, she is finally able to do some

manual modalities that she was unable to do before without flaring up the

painful flatback symptoms. So I'm hopeful.

>

> I have returned to work (as of just last week) after being out for EIGHT

months! I'm grateful they held my job and I am allowed to return on whatever

schedule works for me. I do have a 45 minute car commute (each way) to work, so

Dr. Glazer and I were both concerned about that. However......last week was a

breeze! No problems at all. I only worked 10 hours over two days, but it was

successful. This week I am attempting to work three days. Yesterday I even

worked 6 1/2 hours with absolutely NO problems. I was mentally fatigued, but

physically I felt fine. We'll see how it goes. Slow and steady wins the race and

as I often repeat to myself (I believe it was Cam that told me this too! Gotta

love Cam!) there is NO prize to the person who heals the fastest!! I happen to

be a compliant person - I'm not even tempted to do anything I'm not supposed to

and I rest when I need to.

>

> I know that unfortunately sometimes we hear from folks who are not where they

would like to be int their recoveries, but some of us are. We need to know that

there is good and bad in everything. Do I consider my surgeries to be a success?

YOU BETCHA! Do I think my surgeon is better than others? NO!!! (although I DO

think he is great!!)Do I think I was just lucky? PERHAPS. Am I symptom-free with

no aches or pains? OBVIOUSLY NOT. But then again, I never expected to be.

>

> So at my 6 month post-op time, I'm happy. I am getting my life back a little

more each day, each week, each month. I take what I can get. Do I wish I could

sit here and say not only were my surgeries successful, but they went smoothly

and it wasn't all that bad and that I am completely pain-free and live is just a

bowl of cherries?? Yeah, I wish I could. But I truly understood going in that

that wasn't realistic. I'm just little 'ol me, trying to make the best of my

scoliatic body and trying to take each day as it comes. With a smile on my face!

>

> D (RI)

>

November 9, 2010

You're very welcome, Kate!

>

> , Thank you so much for posting your recovery experience. It is helpful

to hear when considering revision surgery. I wish your knees were better and

hope the PT helps. Also wish you didn't have the other issues you do but

appreciate your being honest in relating them. I am trying to get workers comp

approval for my revision (as my fusions were as a result of a work injury) and

your letter gives me more confidence that I'm on the right track. Take good care

of yourself. Best. Kate

>

> From: valerie_delaney

> Sent: Tuesday, November 09, 2010 9:34 AM

>

> Subject: [ ] My Update