Update

[Guest guest]

Dear California Carol,

I'm a former California girl, so many of us California girls here, I'm from

Modesto. While I'm here in Colorado, a part of my heart will be forever

there. I had my Harrington Rod surgery at UCSF in 1973 at fourteen, and I

started having pain at the 11th year following surgery mark. So when you

chimed in with that fact I KNEW what you were talking about. While it really

is a surprise to be going through all this for a second time, with the help

of a great doc, you'll find your way through this second scoliosis

challenge. I'm three years out from revision and doing well. Just wanted to

say hey, and I look forward to hearing how your appt goes when you get in.

Maybe some one can chime in on this, can they copy old films? I asked my doc

for copies of recent ones and got them, they use me as a teaching case, and

I help out with patients, so they maybe a lot more kind to me, but I'm sure

you could at least purchase them. I think it's important to have copies,

Lord knows my UCSF ones were long gone, and maybe years down the road from

now we may need them, and who knows if our doc's will still be in practice,

or the X-Rays will be destroyed. I also have copies of my surgical reports

and office visit reports, very important. Just my two cents!

Colorado Springs

[ ] Re: Update

> I'm still in the medical information gathering mode, but as soon as I

> assemble some medical records, I will call them again and ask exactly

> what they want. I'm wondering (and anyone can answer this) how do you

> get copies of your X-rays?? Or do they even make copies for a person

> to keep? Do doctors just forward them to other doctors, and we can't

> have them??

>

> I actually live in Central California half way between Fresno and

> Bakersfield. I guess it's not too terribly far from you. I do know

> that it would take me 4 hours to drive to SF. I've been to Fairfield

> and Vallejo area before. We went to Marine World Africa USA about 8

> yrs ago. I've heard thatpark is all different now. It didn't have any

> amusement park rides then. (I actually prefer no or few rides!)

>

> I posted my info. in the files section, I believe, but I'm fused from

> T5-L4 (12 vertebrae) I guess I probably did have the flatback from

> the beginning, but no one--including me--had ever heard of such a

> thing until I discovered about it here on the internet. All I know is

> that I've been experiencing back pain for about 20 yrs. now. It

> started around 10 yrs post-op. I had my surgery at age 16 in 1974 at

> Oakland Children's Hospital.

>

> Write again!! Anything you want to know or make comments about is OK

> with me.

>

>

>

>> >

>> > I just wanted Racine and others who posted in response to

> me

>> > recently to know that I called UCSF's 800# today and they said it

>> was

>> > the " fine institute " ? (not sure of spelling) for spine &

> neorologic

>> > disorders. The guy said, no, you don't need a referral, but they

> do

>> > need to have a " packet " of information sent to them (or faxed)

> with

>> > results of tests like CT scans, X-rays, that sort of thing and

>> > doctors' notes and then a demographic page about myself. Then

> they

>> > decide if they're going to see you. I am going to start to

> assemble

>> > doctor's notes and files, but I will see how much luck I have

> with

>> > that. We are allowed as patients to have copies of our files, and

> X-

>> > rays, etc, right? Part of HIPAA and all that, right? I assume

> I'll

>> > probably have to pay for it. How much detail does UCSF need? Does

> a

>> > person need a photo of themself to prove they have flatback, or

>> what?

>> > My problem is that I called Children's Hospital of Oakland a

> couple

>> > of weeks ago and found out they destroyed all my surgery records

>> and

>> > X-rays, etc. a long time ago. They said they only keep medical

>> > records 20 years, and if I had known that, I would have asked for

>> > them long ago. Now I have no pre-surgery info. or X-rays. I don't

>> > even remember how bad my double curve was. I was only 16, so

> don't

>> > remember a lot. It probably was close to 90%, but not sure. I'm

> now

>> > trying to get medical records from my family doctor from the

>> 1980's,

>> > because that's when I started having the lower back pain and pain

>> > down my left leg around 1985-86. " Radiculopathy " he called it. I

>> > don't think he ever took X-rays, though. I have some X-rays here

> at

>> > the local hospital taken around 8 yrs. ago or so, and the ones

>> taken

>> > last year at the orthopedist (the first ortho I saw since my

>> surgery

>> > 32 yrs. ago) I've been in ortho la-la land the past 30 years!!! I

>> > just know that I have gotten some peculiar looks from X-rays

> techs

>> > over the years and also last year when the dr. posted my X-ray in

>> the

>> > light box right in front of some other patients out in the hall!!

>> > They sure stared at it. Made me feel like a freak.

>> >

>> > On a separate note, I was reading some of the posts today, and

> read

>> > one from someone about " implants " and the dangers from

> infections.

>> > Well, I've never been clearly told about that one way or another.

>> > I've never taken prophylactic antibiotics for any dental

> procedures

>> > or anything else. No one seemed to think it was necessary. I did,

>> > however, have a raging staph infection from a biopsy (not spine

>> > related) about 4 years ago that required me to go to the hospital

>> and

>> > have intraveneous antibiotics because it had spread to my blood

>> > stream. Would something like that harm my harrington rod and

>> fusion??

>> > Does anyone have any idea??? I seem to be fine now. (No thanks to

>> the

>> > original surgeon) My family doctor realized the urgency and

>> > hospitalized me. I could have easily died.

>> >

>>

>

>

>

>

>

>

> scoliosis veterans * flatback sufferers * revision candidates

>

[Guest guest]

Dear ,

Sorry to hear of your leg pain! The sciatic pain isn't generated from your back? I hope the ten's unit works, my Dad uses one for an injury he had in a car accident, and he's gotten great relief from it. Sorry about the med's but sounds like you'll have to do that till you get your antibiotics done. You have come through so much, a real inspiration to me! Hang in there, I know that answers will come and relief too, you deserve it!

[ ] Update

Hey all - thought it was time for an update on how I'm doing. I'm just about 5 months postop (from the 2nd surgery) and actually as far as my back goes, I'm doing extremely well. No pain problems to speak of. However, when I stopped all the pain meds in June, my right leg really kicked in with sciatic pain. It starts in the buttock, and goes down the outside of my thigh on into the calf. It gets much worse from sitting, so I find I have to lie down quite a bit during the day - which makes it nearly impossible to function normally! My PCP had me start taking OxyContin and Neurontin again, and that controls the pain fairly well. When I saw Dr. Hu in July, she said she wanted me to get a Nerve Root Injection (epidural) to see if that would help. So I went to the Pain Center here locally at Loma University to have that done, and guess what! Their doctors wouldn't do injections in my spine because I am still on several antibiotics for that Staph infection. Which makes perfect sense to me - they won't open a port in my spine which could allow the Staph in. They told me to come back in 3 months when I finish the antibiotics with a release from my Infectious Disease doc. And said in the meantime just to continue the OxyContin. And they also are having me use a 10s Unit. I know some on here have those.....can anyone tell me how they work? I'm also going to PT three time weekly - I do aquatics for about an hour, then they hook me up for electrical stimulation down the back of my right leg. They hook up to the buttock for the piriformis muscle, and down the thigh and calf. I told that it makes my butt cheek dance for about 15 minutes.So if anyone has any ideas how I can come off of all this pain medicine, I would love to hear about it! I'm very depressed (once again) because my back is just great and I should be done with it all, but here I have to deal with leg pain. Grrrrrrrrrrrrr!My Best,~CA~

[Guest guest]

Thanks -

I'm of course assuming the sciatic pain is from my back, but Dr. Hu

just sort of shrugged and said something like " well of

course....you've had so much done to your back! " so I got the

impression that she wasn't that surprised about it. She was hoping

the injection would take care of it. But............that's my luck,

eh? I too am hoping the tens unit helps - I won't get it until next

week. I know it really helps when they do the electrical stim at

PT. And the OxyContin works really well keeping things under

control - it's just that I'm frightened of taking it for so long and

in such high doses. Not for becoming addicted or anything....that's

not a problem at all with me. I just worry about what it's doing to

my body. Well, I will keep you posted on how things go. The one

good thing is I'm nice and straight, tall again, and have no back

pain!

~~

>

> Dear ,

>

> Sorry to hear of your leg pain! The sciatic pain isn't generated

from your back? I hope the ten's unit works, my Dad uses one for an

injury he had in a car accident, and he's gotten great relief from

it. Sorry about the med's but sounds like you'll have to do that

till you get your antibiotics done. You have come through so much, a

real inspiration to me! Hang in there, I know that answers will come

and relief too, you deserve it!

>

>

> [ ] Update

>

>

> Hey all - thought it was time for an update on how I'm doing.

I'm

> just about 5 months postop (from the 2nd surgery) and actually

as

> far as my back goes, I'm doing extremely well. No pain problems

to

> speak of. However, when I stopped all the pain meds in June, my

> right leg really kicked in with sciatic pain. It starts in the

> buttock, and goes down the outside of my thigh on into the calf.

It

> gets much worse from sitting, so I find I have to lie down quite

a

> bit during the day - which makes it nearly impossible to

function

> normally! My PCP had me start taking OxyContin and Neurontin

again,

> and that controls the pain fairly well. When I saw Dr. Hu in

July,

> she said she wanted me to get a Nerve Root Injection (epidural)

to

> see if that would help. So I went to the Pain Center here

locally

> at Loma University to have that done, and guess what!

Their

> doctors wouldn't do injections in my spine because I am still on

> several antibiotics for that Staph infection. Which makes

perfect

> sense to me - they won't open a port in my spine which could

allow

> the Staph in. They told me to come back in 3 months when I

finish

> the antibiotics with a release from my Infectious Disease doc.

And

> said in the meantime just to continue the OxyContin. And they

also

> are having me use a 10s Unit. I know some on here have

> those.....can anyone tell me how they work? I'm also going to PT

> three time weekly - I do aquatics for about an hour, then they

hook

> me up for electrical stimulation down the back of my right leg.

> They hook up to the buttock for the piriformis muscle, and down

the

> thigh and calf. I told that it makes my butt cheek dance

> for about 15 minutes.

> So if anyone has any ideas how I can come off of all this pain

> medicine, I would love to hear about it! I'm very depressed

(once

> again) because my back is just great and I should be done with

it

> all, but here I have to deal with leg pain. Grrrrrrrrrrrrr!

> My Best,

> ~CA~

>

[Guest guest]

CA,

It sounds like you are doing very well, and even with the pain you

sound like you are still making progress. It is too bad that you can't

have the epidural any sooner, but I can see that it would be a good

idea to wait. I do hope eventually you are able to find some relief

there.

In any event....you are still early in the healing. Does DrHu think

that this sciatic pain might still resolve as things solidify? I hope

so!

Take Care, Cam

[Guest guest]

Annette,

That was a good idea...going to check out the " floor " before you get

rolled in there! I am sure if I had seen how close quartered the

shared room were at NEBH I would have opted for a private the first

time through. Of course they were under renovation at the time and I

don't think it was really a choice anyway...but it was well worth

the extra money to have my own room after the 2/3rd stage. It is bad

enough getting through the first few days yourself....dealing with a

roomates pain/visitors/TV just made for a less than optimal couple

of days.

I am glad you have gotten through your blood donations and most of

your " to do " list. It will be a busy week or so ahead....but stay

calm and try not to fret too much. If you have the Successful

Surgery CD try putting it on with headphones when you go to bed...I

found it very effective at shutting down the little worry wart in my

head and I would fall asleep....even the night before surgery while

in a hotel room!

Keep us posted.

Take Care, Cam

[Guest guest]

Annette,

I am praying for you Annette, the week going in is a tough one.

[Guest guest]

Annette,

I am looking at doctors for revision and did not

know there were any dociors at town. I have

Carefirst Blue Choice of MD so I have to stay in MD,

DC & Northern VA. Since this is a BIG step in our

lives I am looking at more than one or two doctors. I

also had my initial fusion T5 to L4 23 years ago at

the age of 26 years old at Children's Hospital in

Baltimore, MD. I like you realize things are a lot

different in medicine today. One of my worst memories

was the nurse telling me at 3AM, " YOU CAN'T GET

MORPHINE AS A PRESCRIPTION " . If she had read my chart,

I was NPO (nothing by mouth) as I was vomiting every

time they tried food, so my choice was only what the

doctor ordered.

Did town do your first? Please keep the

group posted.

Thanks for sharing.

Lynne Gaither

Hanover, PA

__________________________________________________

[Guest guest]

Thanks again to all for your support.

Lynne, I did have my first surgery at town in 1983 with Dr.

Langloh, now retired. I did go to Dr. Scwab in NYC and Dr. Kostuik,

now retired too, at s Hopkins. I like Dr. Lauerman and his team

at town and it is close to home and my family. Others on the

board are talking with Dr. Kebaish at JHU. I just didn't follow up

with him once I started having Dr. L follow me and Kostuik retired.

I'm doing fine so far, blood donations were no problem, starting to

pack, etc. Preadmission testing is Monday morning.

FYI and I think the board discussed this some time ago, but my dentist

suggested that when I come back in six months that I should take an

antibiotic in advance just in case any bacteria from the cleaning were

to get in the blood stream. They are cautious about cleanings after

surgeries.

Best,

Annette in Arlington

Revision Oct 2nd.

[Guest guest]

Hi Annette, I sympathize with you trying to " do " around the house and

hubby wanting you to be back up to speed. I want to remind you tho'

that when doc's say no bending and limited lifting, they REALLY mean

it. I don't remember if you are wearing brace and/or bone stim unit.

With my (failed) revision 3 years ago, I had neither. It is TOO easy

to be tempted to lean sideways to pick something up (like sitting at

computer and reaching for something on the floor. Or taking more out

of the dryer than you should. I know my fusion failure at S1 MAY have

been successful if I had worn a brace and stim unit... and I don't

THINK I did too much too soon, but once FAILURE is the result, one

does always wonder... " what if... " So, please, be MORE careful than

your doctor said, instead of less. For all that you have been thru' so

far, you are a " super-woman " ! ... but that " don't " mean you are ready

to fly yet! Hugs, Marty

[Guest guest]

>

> Hi Bee...would you believe that Olana (my daughter) was on a local

health radio talk show last Friday discussing all the information

about being a sugar free kid?!? Her speech lead to a blurb of her

winning in the paper, which lead to more interest.......etc....etc.Oh

she loved it and so did the people at the station, and the

listeners. This has all turned out to be such an awakening for us.

Feeling better gave us an entirely NEW LIFE!

==>That is so fantastic and thrilling Debra. You have a wonderful

little girl who is wise beyond her years! I would love to have heard

it. Congrats on your NEW LIFE! It pleases me so much.

> Have I thanked you 1000 times? So this will make it 1001...thank

you........ Love,

==>Debra, thanks so very much! I am honored.

Luv & Hugs to you and beautiful Olana! Bee

[Guest guest]

Thank you . You are a wonderful friend, no doubt! Please tell

we are all praying for her. Hugs, Marty

Hi all - I got home yesterday after staying at UCSF with for

11 days. It just about killed me to leave her what with the condition

she was in, ... ~~

[Guest guest]

Dear ,

What a dear friend, you two are lucky to have one another. She's at a rough spot, hard for her and everyone around her to get through. While my situation wasn't as bad, I threw up for a month following my last surgery, and boy did I feel like" What have I done to myself", but you just have to get through the rough post-op period. It's so hard to see a dear friend go through this, and I'm sooo sorry she's feeling so poorly right now. I'm glad to hear of the terrific correction Dr. Hu was able to obtain, and I'm sure will be too as soon as all the gastic troubles pass. Thank you for keeping us so updated on her condition, and pass our love and support onto her and her husband!

Colorado Springs

[ ] Update

Hi all -I got home yesterday after staying at UCSF with for 11 days. It just about killed me to leave her what with the condition she was in, but I just had to. Anyway I spoke to her hubby Bob today, and she's no better. They tried to put the NG tube in today to no avail....she couldn't tolerate it. She's back on narcotics so she could get some rest, and basically it's just back to the waiting game once again. On a higher note, that woman is so tall and straight I had to look up at her when she stood! Her husband had never seen her fully erect before and he was just flabbergasted. AND he was amazed at her back curve (lordosis) which she also didn't have. Right now she is so sick and depressed she wishes she never had done this. But I know that once everything resolves she will be back to her happy, cheerful self and she is going to be so excited to be straight and pain free!!Between and myself, we'll keep you all up to date on her progress.~~

[Guest guest]

HI ,

Sorry to hear that is still having such a hard time. Please send her my very best wishes.

Bonnie

[ ] Update

Hi all -I got home yesterday after staying at UCSF with for 11 days. It just about killed me to leave her what with the condition she was in, but I just had to. Anyway I spoke to her hubby Bob today, and she's no better. They tried to put the NG tube in today to no avail....she couldn't tolerate it. She's back on narcotics so she could get some rest, and basically it's just back to the waiting game once again. On a higher note, that woman is so tall and straight I had to look up at her when she stood! Her husband had never seen her fully erect before and he was just flabbergasted. AND he was amazed at her back curve (lordosis) which she also didn't have. Right now she is so sick and depressed she wishes she never had done this. But I know that once everything resolves she will be back to her happy, cheerful self and she is going to be so excited to be straight and pain free!!Between and myself, we'll keep you all up to date on her progress.~~

[Guest guest]

, you are an amazing friend!

Continuing to pray that she starts feeling better very soon!

Sharon

[ ] Update

Hi all -I got home yesterday after staying at UCSF with for 11 days. It just about killed me to leave her what with the condition she was in, but I just had to. Anyway I spoke to her hubby Bob today, and she's no better. They tried to put the NG tube in today to no avail....she couldn't tolerate it. She's back on narcotics so she could get some rest, and basically it's just back to the waiting game once again. On a higher note, that woman is so tall and straight I had to look up at her when she stood! Her husband had never seen her fully erect before and he was just flabbergasted. AND he was amazed at her back curve (lordosis) which she also didn't have. Right now she is so sick and depressed she wishes she never had done this. But I know that once everything resolves she will be back to her happy, cheerful self and she is going to be so excited to be straight and pain free!!Between and myself, we'll keep you all up to date on her progress.~~

[Guest guest]

I'll be thinking of you -- as I do, anyway.

Let us know how the visit to the Lahey Clinic turns out. Best wishes.

Harper

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

[Guest guest]

Thoughts and prayers are with you, Joanne. Keep us posted! Ellie

Jj Cathcart <JJCATHCART@...> wrote: Friday I go to Boston

(Burlington) to Lahey Clinic for a CT scan on my lungs then I will see my

infectious disease doctor and see what she has to say.hopefully the diagnosis is

a simple fix thing............. prayers would be appreciated. Thank you all.

Will let you all know the results..... Joanne

Jj Cathcart

jjcathcart@...

[Guest guest]

You're in my thoughts.

Good luck

Loes

_____

From: [mailto: ]

On Behalf Of Jj Cathcart

Sent: April 26, 2007 6:51 PM

Subject: [ ] Update

Friday I go to Boston (Burlington) to Lahey Clinic for a CT scan on my lungs

then I will see my infectious disease doctor and see what she has to

say.hopefully the diagnosis is a simple fix thing............. prayers would

be appreciated. Thank you all. Will let you all know the results..... Joanne

Jj Cathcart

jjcathcart@earthlin <mailto:jjcathcart%40earthlink.net> k.net

[Guest guest]

>

> Friday I go to Boston (Burlington) to Lahey Clinic for a CT scan on

my lungs then I will see my infectious disease doctor and see what she

has to say.hopefully the diagnosis is a simple fix thing.............

prayers would be appreciated. Thank you all. Will let you all know

the results..... Joanne

>

>

> Jj Cathcart

> jjcathcart@...

Sending you prayers and wishes for a speedy recovery, Joanne.

Sharon

[Guest guest]

Joanne,

I hope you get good news on June 20th. Enjoy your gardening!

Sharon

>

> I am still waiting to find out what is going on with my lungs. I

go back June 20th for another CT scan.and other tests. Meanwhile

what are the rest of all you quiet people doing? I hope you are all

enjoying the Spring/summer weather! Winter can be long and it is so

nice to be outside .and for me gardening again. I sent in info on

Q10 as I always took that before my Tx and it did help with my

fatigue a lot..... Joanne

>

>

> Jj Cathcart

> jjcathcart@...

>

>

[Guest guest]

I, too, have only a little bit of knowledge, so take everything I say here

with a grain of salt.

Are you taking Imuran (azathiopriine) or some other immunosuppressant? If so,

that makes you more susceptible to infection.

Also, just the fact that your liver is damaged will make you more

susceptible. Your body just isn't as strong as usual.

Shingles is a disorder that we who take azathioprine or similar drugs need to

watch out for. You can't get it unless you have had chickenpox -- shingles,

or herpes zoster, is just the second stage of chickenpox. I'm glad to hear

that your doctors began treatment with Valtrex or a similar drug; I hope you got

it as soon as you developed shingles, as speed is important. These drugs help

control the virus that causes shingles. Usually, the Prednisone dose is

temporarily increased right away. Both these measures are helpful in

minimizing

the effects of shingles, which can be severe and long-lasting. If you need

something for pain, insist on getting it. Pain isn't good for you. If pain is

really severe, consider getting a thoracic block (I may not have the term just

right.) This consists of having a steroid injected into the nerve leading to the

area that hurts the most. If done early, this can be very helpful. Later, it's

less helpful, but still useful. (However, for me, the side effect of the

second one I received was unacceptable -- I snapped at my daughter when she'd

done nothing to deserve it.) The injections can make a big difference; when I

had the first one, I went in minutes from drooling, unbearable pain to

peacefulness and well-being. The drug injected is similar to Prednisone. If you

continue to have pain, a drug called Gabapentin helps some people. I've been

taking

it for about four years and find it quite useful.

Another disease to watch out for is thrush. It's most often found in babies,

very old people, and those of us with compromised immune systems. If you

develop it, you'll feel soreness (or worse) in your mouth, throat, and/or chest.

Typically, you might see a coating on the inside of your cheeks, or what

look like cuts on your tongue. Again, prompt treatment is essential. It's caused

by a common bacteria that everyone has. In us, it can build up quickly and

cause problems.

I try to combat the effects of immunosuppressants by washing my hands a lot.

So does everyone in my family. We all carry little bottles of Purell in our

pockets and use it often.

Yes, it's hard, but these medications mean the difference between living and

dying. We're so lucky to be diagnosed and have access to treatment.

You say you wish you knew more about biology. I do, also. However, I've

learned some in the seven years since I was diagnosed. Back then, I had no idea

where the liver was or what it did. I didn't care, either. At first, I was

too sick to read or use the computer. Later, I bought some books and began using

Google and other search engines to find the information I wanted. A good

starter book is Palmer's book on liver disease; it costs less than $20.

Bit by bit, the pieces start to go together.

I'm sorry you're having a hard time. How long have you had AIH?

Best wishes.

Harper

In a message dated 5/16/07 5:55:53 AM, ksalinI,as5227@... writes:

> Hello- I read everyday and only respond to things I know about and that is

> not very much. I thankfully have not had alot of complications as some of you

> have and my heart goes out to anyone suffering from this disease.

> With that said I want to ask for a little input from the knowledgable group

> as a whole. What the heck is going on with me that I have had every cold this

> winter- 5 rounds of antibiotics and steroids - and now shingles- !!!!!!!

> They put me on Valetrex and the warnings say to beware if you have a

> comprimised immune system? Is this ok? I want it to stop the shingles but am I

> asking for more complications? Did the steroids set me up for this? I wish I

> understood biology better,

> If anyone has an idea please respond.

> /IL/42yrs/ stage 1

>

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

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

[Guest guest]

Hello- I read everyday and only respond to things I know about and that is not

very much. I thankfully have not had alot of complications as some of you have

and my heart goes out to anyone suffering from this disease.

With that said I want to ask for a little input from the knowledgable group

as a whole. What the heck is going on with me that I have had every cold this

winter- 5 rounds of antibiotics and steroids - and now shingles- !!!!!!!

They put me on Valetrex and the warnings say to beware if you have a

comprimised immune system? Is this ok? I want it to stop the shingles but am I

asking for more complications? Did the steroids set me up for this? I wish I

understood biology better,

If anyone has an idea please respond.

/IL/42yrs/ stage 1

[Guest guest]

Please ask whether a (temporary) increase in Prednisone would be appropriate

for shingles. This is a very common way to treat shingles in the early stages,

along with something like Valtrex or acyclovir to attack the herpes zoster.

Early, aggressive treatment lessens the possibility of post-herpetic

neuralgia and other symptoms, which can be life-long and incapacitating.

For me, three years later, the peculiar sort of pain caused by shingles never

goes away -- and I was fortunate enough to be blitzed with drugs before the

blisters fully emerged.

Also, don't be afraid to ask for something for pain if you need it. Does

your doctor know about the numbness?

I found CLEAR calamine lotion -- not the pink kind, definitely not -- to be

soothing.

Harper

In a message dated 5/17/07 11:07:54 AM, hlwilli@... writes:

>

> ,

>

> I'm like you, I read the postings everyday but seldom do I post

> anything. I was diagnosed with AIH in Dec. 05, I'm on 5mg.

> prednisone and 150mg. of 6MP. Last December I came down with a cold

> which turned into pneumonia and last Friday I was diagnosed with

> shingles as well. They have me on valtrex and I'm going back to the

> dermatologist tomorrow for a follow up. The rash isn't gone and my

> side is still numb. Numbness was my first symptom, have you

> experienced that too?

>

>

>

>

>

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

[Guest guest]

,

I'm like you, I read the postings everyday but seldom do I post

anything. I was diagnosed with AIH in Dec. 05, I'm on 5mg.

prednisone and 150mg. of 6MP. Last December I came down with a cold

which turned into pneumonia and last Friday I was diagnosed with

shingles as well. They have me on valtrex and I'm going back to the

dermatologist tomorrow for a follow up. The rash isn't gone and my

side is still numb. Numbness was my first symptom, have you

experienced that too?

>

> Hello- I read everyday and only respond to things I know about and

that is not very much. I thankfully have not had alot of

complications as some of you have and my heart goes out to anyone

suffering from this disease.

> With that said I want to ask for a little input from the

knowledgable group as a whole. What the heck is going on with me

that I have had every cold this winter- 5 rounds of antibiotics and

steroids - and now shingles- !!!!!!!

> They put me on Valetrex and the warnings say to beware if you

have a comprimised immune system? Is this ok? I want it to stop the

shingles but am I asking for more complications? Did the steroids set

me up for this? I wish I understood biology better,

> If anyone has an idea please respond.

> /IL/42yrs/ stage 1

>

>

>

[Guest guest]

Hello everyone. I have been quiet like everyone else but so far I am doing ok.

We are finally getting warm weather more that 2 days in a row. I am hoping to

start work in my moms flower bed and then I am hoping to get my garden in and

redo my flower beds.

Hope you have answers soon.

the WV hillbilly

From: Jj Cathcart <JJCATHCART@...>

Date: 2007/05/14 Mon PM 04:26:35 CDT

< >

Subject: [ ] Update

I am still waiting to find out what is going on with my lungs. I go back June

20th for another CT scan.and other tests. Meanwhile what are the rest of all

you quiet people doing? I hope you are all enjoying the Spring/summer weather!

Winter can be long and it is so nice to be outside .and for me gardening again.

I sent in info on Q10 as I always took that before my Tx and it did help with my

fatigue a lot..... Joanne

Jj Cathcart

jjcathcart@...

[Guest guest]

Hi folks,

A similar experience to report...

I'm really glad you posted your experience Gord, because I've been

aware of a bump on my stomach that seemed like a pearl on the surface

of the skin, it's been around for a couple of years at least. It

hasn't bothered me, but a couple of months ago when I began the

candida diet, the bump began to sting of its own accord every now and

then. Since taking coconut oil over the last fortnight, I have

noticed that it has reduced in size (is kind of flattening out), also

the pearly sheen has left it and it hasn't stung since. Very

interesting.

Nicola

>

> Something real interesting happened this week. I have had a spot on

> my nose for 15 years that was like a real hard bubble. One

> dermatologist tried to freeze it off several times without success.

> Another said it would require surgery to remove. It was

> pre-cancerous. Well, amazingly this week it fell off. I know it was

> the good fat as so many skin issues have resolved because of the

diet.

> Hang in there and good luck.

>

> Gord

>