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In a message dated 8/9/01 9:32:45 PM Pacific Daylight Time, mdcam@... writes:

I am writting this for . My name is and she and Gregg have

been my room mates for some time now. . . . I am moving tomorrow

, I hope we'll still hear from you from time to time.

[Guest guest]

In a message dated 11/15/01 6:31:23 PM Pacific Standard Time, dagelo@... writes:

As for the pred, it was 40mg am and 40 mg pm for about a month, then we tapered by 5 mg every week...I am now at 5mg.....but too late, the side effects put 40# on my 120# frame, and I now have diabetes, and very poor eyesight (can't drive anymore). The good news is that I am alive!!!!!!

I'm sorry to hear about your side effects. So far, all I have is the 40-lb gain (but I was 130 to start with.) I'm down to 5 mg, too. I took 80 mg in the morning, with 100 mg of Imuran (supposed to be 150, but the nurse forgot to tell me.) I got down to 5 mg in about eight months, I think. Fatigue is my biggest problem by far. I feel my short-term memory and ability to think quickly have become quite poor. Fortunately, I live in a city where I can use public transportation, walk, or take taxis, so I don't have to decide about driving. My disability insurance folks don't think I have any problem at all because I don't show cirrhosis, but I certainly can't work. I guess I'm retired, of necessity. Luckily I have some savings and my husband has a job he enjoys.

Harper (AIH dx 5/00)

[Guest guest]

, it sounds as if you're on top of the situation, handling it well. Your children (grown and nearly-grown) need to know that drawing up a will is just part of orderly adult life -- like paying taxes. It doesn't mean death is imminent -- or it shouldn't!

You're probably going to be okay. These discussions are a great idea, I think. Most people with AIH don't die from it. Some do, most certainly, but not most. My attitude is that I make preparations for the worst, put that away, and then enjoy the best.

I'm sorry you and your children have to think through all this. Don't be unnecessarily discouraged.

Harper (AIH dx 5/00)

[Guest guest]

Harper,

My feelings exactly. Thank you ALL for your input, I really

appreciate all your thoughts and caring.

Joanna in WA state

AIH 8/01

.. My attitude is that I make preparations for the worst, put

> that away, and then enjoy the best.

..

> Harper (AIH dx 5/00)

[Guest guest]

Hi , My name is and my son Damyan whom is 12 was dx with AIH a month ago. The doctor is also going to do a colonoscopy next thursday because he has positive factors for IBD. We also live in central florida, where about in florida do you live. The idea of meeting like a AA meeting is a good one except that many of the people in this group live in different parts of the country. The best thing would be to find a local group, if they even have one around here, I'm new to all this, so I haven't seen any around here, but that's a thought. I'm so sorry to hear about the difficulties you've had to endure in your life, and only hope that you recieve your transplant as soon as possible. I was wondering if you have considered a live transplant, like from a parent or sibling. They would practically be perfect matches. I'm not sure if this is an option for you or not, but non the less my prayers are with you.

Damyan's mom

Re: [ ] Hi, it's . I have an idea that I want to ask all of you....

Species859 wrote: First off, the idea I have is at the end of this letter, but I realized that I've never really formally introduced myself to a lot of you. Posting the letters the way that the group is set up, seems a little bit impersonal. I have read many, many e-mails but don't truly know the story behind the name. My name is and I was diagnosed with AIH when I was 16 y/o. Of course, at that time they called it Non A-Non B hepatitis which is now Hep. C. It's all very confusing. Anyway I was treated at Shands Hospital in Gainesville,Fl. and was put on Alpha-interferon. I was only on that medication, shot form, for 6 1/2 months when I went into complete liver failure. I was then put on 100mg. of Prednisone and 50mg. of Imuran. Both of those, with lots of prayers, brought me back from the brink of dying. I was left to those meds. for many years, until my platelets started to drop rapidly. I also had Esophageal Varricies. I was feeling really weak for a couple of days and went to the E.R. where I found out that I was bleeding from the varricies. I again, with lots of prayers, found myself getting better when the Dr.'s said I wasn't supposed too. I continued my life until may 3rd when I was going in for another upper endoscopy, along with a colonoscopy. I was real weak beforehand and just didn't feel right about having the tests, which were being done under General Anesthesia. Well, the tests were done and I came home to Orlando feeling hung over, but alright. On May 5th , I started to feel more weak and really strange. I went into the E.R. where the Dr.'s informed me that my liver had shut down along with my kidneys. I had "decompensated", and my platelets were very low. I was bleeding from my nose, my ears, and had blood filling up the whites of my eyes. Basically I was "bleeding out". The Dr.'s couldn't give me any blood, because if I had to have a liver transplant, I couldn't receive any blood products 3 days prior to transplant. I think that the toughest thing that I had to do was to sign papers, authorizing my next of kin to make decisions in case it came to the point that I couldn't. I was told that I had a few hours before I would probably lose consciousness and have to be put on life support. The Dr. said that most bad things always seemed to happen late at night and it was 7:45PM. Well, obviously again with lots of prayers, I pulled through a close call. The Dr. said that he has seen people half as sick as I was that didn't make it. Well, I'm very happy to say that my kidney's are doing fine. My liver is a total loss, but I've always known that this day would come. I'm currently on the liver transplant list where my number is at 17. I'm still very nervous, and anxious about the transplant surgery. There are happy days, and other days when it seems all I do is cry. I just turned 33 in April, and there is still an awful lot that I want to do and accomplish before my time is up. I also still have days that I feel that I'm just so much of a burden to my family that maybe it would be best for me to pass. Do any of you feel or have felt this way? I hope that everyone is doing well and feeling great! The idea I have is for an actual group that physically meets each week or two to talk about whatever and share how each of us are doing. I live in the Central Florida are and was wondering if others in the are would be interested. Please feel free to give me feedback on whether or not any of you would think that this was a good idea or not. If not, please let me know why and if anyone has any other ideas on meeting, please let me know. I am looking forward to hearing from you soon. Please take good care of yourselves! All of my best…..

[Guest guest]

HI you sound like a medical professional, you do know your stuff. the orthopedic surgeon said my sons hip (ryan age 12 systemic ) was out of the socket with no cartiledge left. he said it was too far gone to try to go in and surgically put back in place. at first he said it wasn't avcascular necrosos, then towars the end of the conversatiuon he said he didn't "think" it was avascular necrosis. we have had mri,s , xrays and catscans. He said he needed a hip replacement but that he was so young it was considered high risk. he said we could go to Boston Childrens Hospital for second opinion, since they don't do hip replacemnts or have never done them on a small child here at the hospital in R.I, his advice was to basically wait until he can't walk anymore before having it done. and as of right now he can't walk too far.. any feedback appreciated. thanks Jane

[Guest guest]

Hi ,

Thank you! Yes - the different Doc thing drives me nuts - especially when they

come in discussing the wrong med! Not as bad as the time that a nurse came in

when Rob was an inpatient, to give him his cyclosporine, and asked me what type

of cancer had. I sent her out of the room - told her she wasn't giving

my son any medication unless she knew why he was taking it. I worked with

inpatients too long, and gave too many meds to put up with that for one minute.

I hope your Rob gets to see the same Nephrologist this time. Robbie has been

lucky there - we've had the same nephrologist from day one.

I am so glad that the growth hormone resolved the osteopenia, and that your Rob

has had so much growth! I am hoping that Robbie's Osteopenia doesn't progress -

I am buying him Viactive now in place of his other Calcium Supplement - the dose

got so high that the liquid tasted too bad - he could take it in smaller doses.

He was skeptical when I told him the medicine was kinda like a tootsie roll -

now he looks forward to his chocolate medicine.

Rob has only had one fever since the last time I wrote about it - so I've

decided it was nothing. : )

I'm sure you figured out that Robbie hasn't had the stim test - that isn't

something I would have forgotten about. I guess that will be next if he

continues to show such a small amount of growth. I have a friend who's husband

is really tall (6'5 " ) or taller and my ex is considerably shorter than him.

Anyway, my friends son is about 9 months younger than Robbie - and much, much

taller (6 - 7 inches). Anyway Robbie was telling her that he was shorter than

his friend, her son, because of his medicine, that he should be bigger. She

starts telling him how much taller her husband is than Rob's Dad, and said that

Jimmy would be taller anyway. I had to laugh a little, and then I told Robbie,

with her there, that yes - when they reach their growth, Jimmy will more than

likely be much taller than Rob, if he takes after his father (he isn't

particularly tall for his age) - then I pointed out that some of her husbands

brothers weren't so tall, and that we never know how genetics are going to work

- but that given that Jimmy would probably be taller than Rob as they get older,

that they should still be closer in size than they are, and that the Doctors

have evaluated my height and his dad's height, and determined that Robbie is

much smaller than he should be at this age. It just drives me crazy when people

discount what they don't know. I have another friend that thinks that Robbie

got through this much of the winter without a flare this year because he is

playing basketball and it has taken his mind off of his illness. I said;

" You're probably right, tripling the Cyclosporine, and stopping the pred taper

probably had nothing to do with it. " She saw him when he couldn't walk, yet

she thinks I should ignore it when he complains of pain, but continues to play.

Whew, I am really venting here - better get back to my response!!

I was excited to read that you might be in the area in Jun - I would love to

meet you and I know Robbie would enjoy meeting big Rob! Let me know when you

know more. I'll send you my phone number so you can get in touch with us!

Well, I'd better get back to work - I started this a lunch time - then had to

come back later and finish it. Take care!

Val

Rob's Mom (6,systemic)

In a message dated 2/19/2004 8:45:26 PM Eastern Standard Time,

snooksmama@... writes:

>

>

> Val:

> Thank you for your post. It is always good to get updated on yourself and

> Robbie. Hope he was fever free today. Yep, I hate to get a different doc.

> The last 2 times at nephrology Rob has seen a different doc. When we go

> back in March we will see the same one we saw in December, God willing!!

> You know, my Rob has or rather had osteopenia, and it resolved with the

> growth hormone. He was being treated with Actonel prior to going on the

> growth hormone.

> The growth hormone stim test has to be done in a controlled setting. They

> start an IV line, administer a medication, and then draw blood at 1/2

> hour intervals. The med ( I can't remember the name at present, but it

> was a BP med) made Rob really sleepy, but the experience wasn't too bad.

> > but it isn't just cosmetic like you said - though that does have

> > it's affect on Rob. All the kids tower over him, he needs a stool

> > to reach the child size sinks in school - there are just a lot of

> > things.

> Right you are, Val...to Rob, the growth issue was very important. It

> still is, though he has caught up a lot, he is still one of the smallest

> freshman in his class of 150. (I think there may be one child smaller

> than him).

> As far as the growth hormone cost, we won't have an answer from our new

> insurer for a while, but in the meantime, Lilly is going to continue to

> provide the GH. We feel very blessed.

> > They have changed me from Prilosec because of the cost and I am

> > taking another, less effective med now.

> That happened to my husband too, with his med for GERD

> > I think that is everything on Rob. My original follow up was

> > cancelled because of snow - but I did see the Doc last week - and my

> > blood count has improved - though it's still low. My hgb is up to

> > 11 - which is pretty good from 8.something - but my iron is still

> > quite low - I don't have the results handy - but overall improvement

> > - just not as much as she would like to see, and she still wants to

> > identify the underlying cause. They ruled out my cycle, since it is

> > relatively light except for the first day and unchanged since I had

> > Rob. So off to the GI clinic I am going for a work up to make sure

> > there is nothing undetected going on there. (this is not going to

> > be pleasant) - she also did an chest xray - because my laryngitis

> > did not clear up until the end of Jan - and I still have frequent

> > hoarseness. She wanted to make sure that I didn't have a goiter

> > (apparrently they sometimes grow into the chest and not always

> > visible on the neck) pressing on the nerve that affects the larynx.

> > That was all clear (though the xray report did comment on " mild

> > degenerative changes in the thoracic spine " this aging stuff is for

> > the birds...). Anyway, we were just going to wait and see, but when

> > she called me about the GI referral, she noted that my voice was

> > hoarse on the phone - so off to ENT to check that out. I think that

> > is just a result of my allergies - it's always worse in the winter.

> I am glad that you are doing better. Wish they could uncover the cause of

> the low blood count, though, without the uncomfortable procedures. Be

> sure and keep us updated on what is going on, ok? I hope that Robbie's

> sed rate declines and that he will continue to do well, and maybe get off

> the pred. He has had so much to deal with in his young life. Oh, by the

> way, I may be in Washington the first weekend in June for my cousin's

> daughter's wedding. If we do, we will have to be sure and meet up! Rob

> can meet Rob!

> Take care,

> and Rob 14 Spondy

>

>

> > Overall, I am feeling much better - and the outside temp is even

> > decent today, so spring is on the way! Thanks for asking! I keep

> > trying to read and keep up on everybody - but my home computer is

> > still down and work has been really busy - I often eat lunch at my

> > desk to try to stay on top of things. I hope that you guys are

> > staying well and keeping warm!

> > Val

> > Rob's Mom (6,systemic)

> >

> > In a message dated 2/18/2004 4:54:18 PM Eastern Standard Time,

> > snooksmama@... writes:

> >

> > >

> > >

> > > Val:

> > > I'm glad that you updated on Robbie...

> > > At least, even if they wait to see him again for another 6 months,

> > he

> > > does have plenty of time for growth. But I have since learned that

> > growth

> > > issues are not just cosmetic. Poor growth can affect the bone

> > density and

> > > internal organs, so its not just 'for looks' or to fit in.

> > Although for

> > > my Rob, the growth was important to him. Just being able to reach

> > the

> > > upper kitchen cabinets has been a huge victory for him!

> > > Did Robbie have a stim test yet? If not, that will likely be the

> > next

> > > step. We had a bone age, waited 6 months, little growth had

> > occurred, and

> > > then Rob had the growth hormone stim test.

> > > Growth hormone is quite expensive, but most of the drug

> > manufacturers

> > > will donate the medication for a fraction of the cost. For

> > example, Rob's

> > > dose costs $48,000 a year , and Eli Lilly is charging us $1500.

> > > How is your blood count doing these days?

> > > and Rob 14 Spondy

> > >

> > > On Wed, 18 Feb 2004 12:28:00 -0500 carneyval@... writes:

> > > > Hi Soili,

> > > > I agree with , but I would approach the rheumy again, and

> > try

> > > > to avoid waiting the six months. Rob's rheumy kept waiting, and

> > his

> > > > pediatrician finally took action - after the Nephrologist said -

> > we

> > > > need to do something! (the old saying too many cooks is coming

> > to

> > > > mind) - anyway - Rob was referred to endocrinology, the bone

> > study

> > > > showed Rob's bone age to be inbetween 3 - 4 (He's 6) - and he

> > hadn't

> > > > shown any substantial growth for a year. The first appt they

> > > > discussed everything, ordered some tests, and measured him on

> > their

> > > > equipment. Then when we went back a month later to discuss all

> > of

> > > > the results, they determined he had grown one half a centimeter,

> > and

> > > > based on that decided to wait six months and evaluate him again

> > -

> > > > even with saying that their original measurement may not have

> > been

> > > > correct. It bothers me because he is halfway through first

> > grade,

> > > > and is wearing Toddler sizes - and we are just waiting. Of

> > course,

> > > > he has been on oral steriods (and some IV) since before

> > diagnosis -

> > > > and has had some growth when the dose has gotten smaller in the

> >

> > > > past. JRA itself can affect growth according to the literature

> > I

> > > > have read - it's not just the meds. I found out that

> > cyclosporine

> > > > can also affect the growth, which Rob has also been on for a

> > long

> > > > time. Rob too is looking thin (again, since the dose has come

> > back

> > > > down) and has dark circles - under his eyes and looks pale.

> > Some

> > > > may be just due to the winter - though he does have some time

> > > > outside on warmer days - and he is keeping active and has tons

> > of

> > > > energy - looking at him though, I keep waiting for the signs of

> > a

> > > > flare - he has that look about him that I am trying not to

> > > > recognize. He did have some knee pain yesterday morning - so

> > all

> > > > day at work I wondered how he would be when I picked him up -

> > but he

> > > > was running around playing, no pain and ready for tuesday night

> >

> > > > skating. Boy did I ramble off from what I intended. My whole

> > point

> > > > really is that the endocrinologist may want to take time to

> > observe

> > > > and watch, just like Rob's has - in spite of having a record of

> >

> > > > almost no growth for a year in his records already - so why

> > wait

> > > > six months before you even get Juho seen?

> > > > Best wishes!

> > > > Val

> > > > Rob's Mom (6,systemic)

> > > >

> > > > In a message dated 2/18/2004 11:27:17 AM Eastern Standard Time,

> >

> > > > soilimar@... writes:

> > > >

> > > > >

> > > > >

> > > > >

> > > > > > I would urge you to take Juho to a pediatric

> > > > > > endocrinologist who can determine the source of Juho's

> > growth

> > > > delay.

> > > > > > Keep us posted on Juho!

> > > > > > How are your other children doing?

> > > > > > and Rob 14 Spondy

> > > > >

> > > > > Hi ,

> > > > > thanks. I hope Juho will be referred to ped. endocrinologist,

> >

> > > > that's

> > > > > what I asked for but the rheumy wanted to wait and see for 6

> > more

> > > >

> > > > > months.

> > > > > The others are doing ok, Juha's polyarthritis is in medicated

> >

> > > > > remisssion.

> > > > > Thanks again,

> > > > > Soili

> > > > >

> > > > >

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Slim said that he has spoken with insiders from electrical plants and

nuclear reactor plants and says that they are often placed on Earth

energy grid lines so the ground return is the easier and strongest.

This would support the idea that Hartman lines or electrical ground

returns from houses, businesses, power poles, etc. can and do use earth

energy lines to travel back to source.

I am still learning about the difference and similarity between the

energy lines and would like to hear what info others have on this

subject.

On Aug 24, 2005, at 12:14 PM, SArjuna@... wrote:

> However, I have not heard of any research done regarding possible

> interaction

> between manmade electricity and natural earth grid lines.

>

[Guest guest]

:

I initially had the ELISA test (2 times) I inconclusive, 1 positive and went

on 2,000 mg of amoxicillin for 1 month, then retested 2 more time negative.

Still had symptons, went to a nutritionist she kept asking me about any Lyme

tests, I told her my story and she kept pushing for the Q-Rib test, I took it

and it came back positive high, (I think 1:128, I have to look) and she and my

ID doctor say that is the best test to identify Lyme.

Just to let you know, I do believe it to be true after all the other tests

that were taken.

See ya!

DonnaLee

wtptoo <wtptoo@...> wrote:

I had the Q-RiBb test recently and came up highly positive 1:128

dilution with spirochetes found only in the L-form.

[Guest guest]

Despite all the controversy while I do have high regards for Igenex,

the Bowen Q-RiBb test makes more logical sense. All the Igenex tests

as far as I know look for antibodies, yet many sources state that

long term Lyme sufferers do not make antibodies, or they stop making

them after a few months or years, or even their arthritis meds

prevent antibody production. So it makes more sense to look for the

actual spirochete organism like the Q-RiBb does. -

> I had the Q-RiBb test recently and came up highly positive 1:128

> dilution with spirochetes found only in the L-form.

>

>

>

[Guest guest]

I was positive on IGeneX IgG and IgM western blot after being sick

for nineteen years. I had been on antibiotic for 3 weeks for a bad

sinus infection. I had the test done about 2 weeks after I stopped

taking them. I don't know if that made a difference.

Kathy

-- In , " wtptoo " <wtptoo@y...> wrote:

>

> Despite all the controversy while I do have high regards for

Igenex,

> the Bowen Q-RiBb test makes more logical sense. All the Igenex

tests

> as far as I know look for antibodies, yet many sources state that

> long term Lyme sufferers do not make antibodies, or they stop

making

> them after a few months or years, or even their arthritis meds

> prevent antibody production. So it makes more sense to look for

the

> actual spirochete organism like the Q-RiBb does. -

>

>

> > I had the Q-RiBb test recently and came up highly positive

1:128

> > dilution with spirochetes found only in the L-form.

> >

> >

> >

>

[Guest guest]

Do you use a switch to change polarity, or do you do it manually? This is when I

feel the surge of current, not usually during the zilling. However, my wife does

complain about the feeling, so some people are more sensitive, I guess.

Dick

reply to

Forgot to say I am using 4x8 pads with non regulated 6 volt gutzilla

pads. Have to say I love them. I do feel strong tingle but have used

old cotton rag on positive post to reduce the stinging. I can still

feel the sting but I can tolorate it.

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

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PM

[Guest guest]

Sure.

From reading this website and from what I just wrote.

Please let me know your story.

Thank you for taking the time to reply.

Hope to hear from you

Vicki

[Guest guest]

,

I have been struggling with this disease for at least 12 years. I started

having symptoms at age 28 and it took a few years to get a diagnosis, I am

now 40. I have tried just about every medication approved for PsA and one

that isn't. Most meds work for about a year and then quit. Even when

they work, i still have flares. The flares may be as minor as a little

stiffness and fatigue, or as major as not being able to walk to the

bathroom alone due to a flare in my feet. I can literally be fine one day

(or one hour) and then not the next. For me, an increase in stress or a

lack of sleep will trigger a flare. I am a certified nurse midwife, so I

deal with stress at work and certainly a lack of sleep when I'm up for

births. I can't rely on my hands to do a delivery or suture right now so

I'm not currently taking call at our practice and I am teaching at the

University here because there is less stress and I can sleep on a regular

basis. I don't know if I'll go back to doing births, I may only work in

my practice and continue to teach. So to answer your question, it

certainly can effect your life and cause you to make changes. My doc has

recommended I appy for disability, but I'm not ready for that yet. My

body is, but not my pride. I never get a flare in my psoriasis and mine

is also on my scalp only.

I can't tell you that this will be your course, but for me it has been

very discouraging at times. In 2002, i went into remission for 2 years.

In 2004, my husband had a major aneurysm surgery at Baylor in Houston

(we're in Montana). He was in the hospital there for 2 weeks and we

didn't know if he would survive as the aneurysm and aortic dissection went

from his aortic arch to his femoral arteries. He still has one aneurysm

left on his arch that they will repair when it reachs 5 cm (it's currently

4.8 cm). When all of this hit, my PsA came out of remission and returned

with a vengence and I've never been in great control since.

I have used MTX, Arava, Enbrel, Prednisone, Indocin, Celebrex, Bextra,

Remicade, and Orencia. I am now back on Enbrel and MTX, Celebrex, and

Fentanyl suckers for breakthrough pain and oxycontin for continuous pain

control. I have tried many supplements including evening primrose oil,

Vitamin E, B-complex, Co-enzyme Q10, DHEA, and the tart cherry capsules

and tart cherry juice. If I had any relief it was minimal and I'm not

sure that it wasn't a placebo effect.

I may paint more of a grim picture than some, this disease runs the gamut.

I hope you have a better outcome than I. Feel free to contact me if you

have questions.

Rae

[Guest guest]

Hi

I use over the counter eye drops that just add liquid to my eyes. There is no eye medicine in them. It relieved my dry eye issues. And, I use a vicks vapor stick when my nostrils get all dried out too. I use emu lotion on my skin and emu soap to shower with and I have not had dry skin except for my elbows but that is normal for me. Some one here told us to use Nozerol dandruff shampoo and we wouldn't lose our hair and that has worked for me so far too. This is week - shot number 16 for me tonight.

Good luck,

Donna Re: [ ] Welcome New Members

hello everyone, its me again mr. Don i was wondering he you could or anyone with dry eyes on tx is there any over the counter relief i can get? Hello savant welcome this site is most helpful you will see.take case everyone im on my five week of a twenty four week im hanging in there. Love karenOn Fri Apr 22nd, 2011 5:03 PM EDT Christ wrote:>

[Guest guest]

Hi ,

Getting better but mostly just frustrated. So much time in a sling the arm and

shoulder are so weak that any movement hurts, but I guess a few more weeks and

I'll be able to start building up some strength there.

How is your shoulder & hip doing?

Take care,

Jeff

From: marywaspe2000 <maryanne.waspe1@...>

Joint Replacement

Sent: Wednesday, June 22, 2011 1:56 AM

Subject: Good luck Pat

Good Luck with your hip Pat, I am sure you will do just fine.

I think every-one is doing OK at the moment as its been so quiet here.

How about you Jeff? a few weeks past now...

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