Questions

[Guest guest]

Thank you for all for answering my question about the cause of my symptoms.

Most everyone who has responded has said the same thing - long term use of

prednisone. Some have said these are all effects of the disease. My guess is

that it is a combination of both. What do you think?

As for the prednisone, how long did you take it before you started having the

symptoms? Do you take anything now? I cannot take imuran and my hepatologist

told me that if I do not take the prednisone that I would flare up again.

Are you aware of any other drugs that can replace prednisone? I have been on

it for five years. Heavy doses at first (about a year) and maintenance dose now

(7.5 mg). The hepatologist told me that 7.5 mg was not enough to cause long

term side effects. I disagree with him. Plus, I have had several surgeries

and each time I was pumped full of steroids and was kept on them for weeks

after the surgeries. I don't know what effect that had.

As always, I truly appreciate the information I get from you guys. I am very

naive about this disease and want to know as much as I can find out. You are

the best resource I have found.

Don Hanson wrote:

> From: " Don Hanson " <donhanson@...>

>

> Hi Kaye,

>

> That is exactly how I felt. We found that the long term prednisone use had

> caused me to have diabetes. I'm now taking insulin and trying to completely

> wean off the prednisone. I'm actually starting to feel a bit better.

>

> My doc says that I'll have to prove that I need to resume prednisone before

> he'll put me on it again. Seems that in my case, the cure is worse than the

> disease!

>

> Don (AIH/ Minneapolis)

> [ ] Questions

>

> > From: Kaye Gillis <kgillis@...>

> >

> > Hi Support Group:

> >

> > I don't write often but I would like some feedback on this: my liver

> > tests have been normal for about 2 years (I am on prednisone only -

> > can't take imuran), however, I still have all the symptoms such as

> > fatigue, brain fog, aches and pains, itching, etc. Is it normal to have

> > all these symptoms when your liver tests are normal?

> >

> > I would appreciate all your comments on this.

> >

> > thank you so much..

> >

> >

> > Kaye (AIH - Ohio)_

> >

> >

> > ------------------------------------------------------------------------

> > Where do some of the Internet's largest email lists reside?

> >

> > At ONElist - the most scalable and reliable service on the Internet.

> > ------------------------------------------------------------------------

> > Please support the American Liver Foundation!

> >

> > 1.) To subscribe send e-mail to -subscribeonelist

> > 2.) To UNsubscribe send to -unsubscribeonelist

> > 3.) Digest e-mail format send to -digestonelist

> > 4.) Normal e-mail format send to -normalonelist

> >

>

> ---------------------------

[Guest guest]

Hi Kaye,

That is exactly how I felt. We found that the long term prednisone use had

caused me to have diabetes. I'm now taking insulin and trying to completely

wean off the prednisone. I'm actually starting to feel a bit better.

My doc says that I'll have to prove that I need to resume prednisone before

he'll put me on it again. Seems that in my case, the cure is worse than the

disease!

Don (AIH/ Minneapolis)

[ ] Questions

> From: Kaye Gillis <kgillis@...>

>

> Hi Support Group:

>

> I don't write often but I would like some feedback on this: my liver

> tests have been normal for about 2 years (I am on prednisone only -

> can't take imuran), however, I still have all the symptoms such as

> fatigue, brain fog, aches and pains, itching, etc. Is it normal to have

> all these symptoms when your liver tests are normal?

>

> I would appreciate all your comments on this.

>

> thank you so much..

>

>

> Kaye (AIH - Ohio)_

>

>

> ------------------------------------------------------------------------

> Where do some of the Internet's largest email lists reside?

>

> At ONElist - the most scalable and reliable service on the Internet.

> ------------------------------------------------------------------------

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

>

[Guest guest]

Judy,

I first went to see a gastro doc and he was thorough but the AIH diagnosis

had him stumped. It took him a year to figure it out, all the while damage

was going on with my liver. Then he sent my biopsy slides to another

hospital and came back with the AIH diagnosis. I then had a second

appointment with a hepatologist and he confirmed the diagnosis. He was

dismayed that I had not been diagnosed sooner and started treatment. There

is nothing wrong with seeing a gastro doctor and some are quite versed in all

liver diseases I'm sure. It's just that AIH is not as common as the viral

hepatitis' and I believe it is better to see a hepatologist who specializes

in the liver. The gastro doctors cover all the digestive organs. Maybe you

can get in to see a hepatologist sooner.

Roxanne

[Guest guest]

Jo:

Maybe the difference in how they treat us (with regard to prednisone during

surgery) has to do with the amount of damage to our livers. My hepatologist

said I am never to go off prednisone and was the one who advised the surgeon

that I should get massive doses of steroids. I don't know. I'm just guessing.

Good luck to you in surgery and I'm glad you don't have to have the massive

doses of steroids. You really swell up and have to have tubes everyplace to

drain all the fluid that builds up. Even after recovery, I had to continue

having liquid drained from my stomach. It was gross!

Kaye AIH Ohio

Cjgillice@... wrote:

> From: Cjgillice@...

>

> Kaye,

> I am scheduled for surgery on July 15th, so my doctor is weaning me

> off of my prednisone, and I will stay off until my surgical wounds have

> healed. I am surprised that your doctors would give you prednisone when you

> have surgery as it decreases the body's ability to heal. Anyway that is why

> he is taking me off of the prednisone.

> I am a little worried about not having my prednisone because my labs

> have just now gone down to normal. He says that I should be able to have

> surgery and heal by the time they start to go up again, and then I can start

> back on the pred.

> I find it curious that each doctor does things slightly different...

> Jo from N. CA

>

> ---------------------------

[Guest guest]

Dear Kaye:

I can relate to your prednisone woes. I've been on prednisone for 4 years.

I'm currently at 8 mg. It's been a tough time for me. I've got all the

classic side affects (i.e., moon face, hump, 50 extra pounds, edema, etc.).

I just went to see a hepatologist at the University of Washington on the 11th

(I've been on vacation for the last two weeks or would have written sooner)

and his first reaction upon seeing me was that something had to be done about

the prednisone. He is going to try me on cyclosporine (I couldn't take

Imuran either). I have to get some kidney tests to make sure I can handle

it. I go in on the 9th of July for another check up and to get some more of

the tests. If I am able to take it, he will then wean me completely off the

prednisone. I have high hopes that I'll be able to get off prednisone for

good. One distressing thing that he said to me is that at my current weight,

I could not get a transplant. He then proceeded to tell me that it would be

virtually impossible for me to lose weight while still on the prednisone. It

bummed me out quite a bit. Talk about being caught between a rock and a hard

place!

I'd be interested to hear from anyone who takes cyclosporine. I understand

that it can make you hairy and can cause gum problems. Have those of you who

take it been able to get off of the prednisone?

Good luck, Kaye. I hope things get better for you soon.

Kathy (AIH)

Seattle area

[Guest guest]

Not to be nosey or anything but do you mind if I ask your weight? That is

kinda scary that you must be a certain weight for a transplant! I know that

I have gained at least 50 pounds since I started predinsone 4 years ago, but

how much is too much? Feel free not to respond if this is too personal. I

just thought that if you get down bad enough the extra weight might actually

help to keep you alive a little longer.( Not that I am trying to justify

gaining any, but common sense.) I watched my dad die of cancer and he got

down so so thin and if he had not been a little over weight he would have

passed away sooner, because of not being able to handle the chemo. I know

this may sound stupid but who knows? My DR doesn't seem to talk much about

" down the road in 15-20 years " only about the present. He hasn't even

mentioned alot of the things discussed here (probably because he is afraid I

will freak out) Ha!

Anita

[Guest guest]

I think this was suppose to go to Kathy

sorry,

anita

[Guest guest]

In a message dated 6/24/99 7:37:42 PM Eastern Daylight Time,

AGo2864215@... writes:

> That is

> kinda scary that you must be a certain weight for a transplant!

I believe that's part of an individual transplant center's criteria. I

recall two men and one woman receiving their transplant at the same time as

mine....all three were grossly obese.

Kandy

[Guest guest]

Kathy,

I am on cyclosporin. I could not take the normal immunosuppressants

(allergic) so the last hope was cyclosporin. It is unusual, apparently to

be used for AIH, it is usually confined to transplant patients for

anti-rejection purposes.

I am currently in remission(God I love that word), and am being weaned off

the pred. The only side affect that I have and hate is the increase in hair

growth over the body. But I am still in the land of the living and coming

down on the pred. That really makes me happy. I have had no trouble with my

gums and I have been on cycl. for over 12 months. I am currently taking

150mg.

Hope this helps.

SueB.

----------

> From: KATBERCOO@...

> onelist

> Subject: Re: [ ] Questions

> Date: Friday, 25 June 1999 9:08

>

> From: KATBERCOO@...

>

> Dear Kaye:

>

> I can relate to your prednisone woes. I've been on prednisone for 4

years.

> I'm currently at 8 mg. It's been a tough time for me. I've got all the

> classic side affects (i.e., moon face, hump, 50 extra pounds, edema,

etc.).

> I just went to see a hepatologist at the University of Washington on the

11th

> (I've been on vacation for the last two weeks or would have written

sooner)

> and his first reaction upon seeing me was that something had to be done

about

> the prednisone. He is going to try me on cyclosporine (I couldn't take

> Imuran either). I have to get some kidney tests to make sure I can

handle

> it. I go in on the 9th of July for another check up and to get some more

of

> the tests. If I am able to take it, he will then wean me completely off

the

> prednisone. I have high hopes that I'll be able to get off prednisone

for

> good. One distressing thing that he said to me is that at my current

weight,

> I could not get a transplant. He then proceeded to tell me that it would

be

> virtually impossible for me to lose weight while still on the prednisone.

It

> bummed me out quite a bit. Talk about being caught between a rock and a

hard

> place!

>

> I'd be interested to hear from anyone who takes cyclosporine. I

understand

> that it can make you hairy and can cause gum problems. Have those of you

who

> take it been able to get off of the prednisone?

>

> Good luck, Kaye. I hope things get better for you soon.

>

> Kathy (AIH)

> Seattle area

>

> ---------------------------

[Guest guest]

Kathy:

Thanks for your information. I plan to ask my doctor about the cyclosporine as

soon as I see him (August 4). I am also going to ask about the possibility of

other drugs besides prednisone and imuran. It's kind of wierd that I can't take

imuran because the doctor says I am high risk for cancer (they found a polyp in

my colon a year ago) yet I can take prednisone which causes obesity, fat build

up, high blood pressrue, water retention, kidney problems, and diabetes, all the

things that lead up to a heart attack. Cancer does not run in my family but

premature heart attacks do so I think it's really strange that I can take the

pred and not the imuran...it doesn't make sense but what does?

I also think it is very wierd what your doctor said about your not being able to

have a transplant at your weight. I had no idea weight mattered. Did he give

any reasoning? Is it just his policy? You might want to check other doctors to

see if they say the same thing. I am aware of a very obese man in this area who

just underwent a kidney transplant. He seems to be doing very well.

As for the hair - I have grown lots of hair from taking the prednison. If I

didn't take the hair off of my face I would look like an Elvis Presley

impersonator!

Well, take care.

Kaye - AIH - Ohio

KATBERCOO@... wrote:

> From: KATBERCOO@...

>

> Dear Kaye:

>

> I can relate to your prednisone woes. I've been on prednisone for 4 years.

> I'm currently at 8 mg. It's been a tough time for me. I've got all the

> classic side affects (i.e., moon face, hump, 50 extra pounds, edema, etc.).

> I just went to see a hepatologist at the University of Washington on the 11th

> (I've been on vacation for the last two weeks or would have written sooner)

> and his first reaction upon seeing me was that something had to be done about

> the prednisone. He is going to try me on cyclosporine (I couldn't take

> Imuran either). I have to get some kidney tests to make sure I can handle

> it. I go in on the 9th of July for another check up and to get some more of

> the tests. If I am able to take it, he will then wean me completely off the

> prednisone. I have high hopes that I'll be able to get off prednisone for

> good. One distressing thing that he said to me is that at my current weight,

> I could not get a transplant. He then proceeded to tell me that it would be

> virtually impossible for me to lose weight while still on the prednisone. It

> bummed me out quite a bit. Talk about being caught between a rock and a hard

> place!

>

> I'd be interested to hear from anyone who takes cyclosporine. I understand

> that it can make you hairy and can cause gum problems. Have those of you who

> take it been able to get off of the prednisone?

>

> Good luck, Kaye. I hope things get better for you soon.

>

> Kathy (AIH)

> Seattle area

>

> ---------------------------

[Guest guest]

Dear Sue B.:

Thanks for sharing about the cyclosporin. I'm really hoping I'll be able to

take it. How far have you gotten on the weaning off the prednisone? Has the

cyclosporin helped with the pain from the pred. withdrawal? The hepatologist

said that I've got something going on besides the AIH that's causing all my

joint and tendon problems that make the pred. withdrawal painful. He said

the cyclosporin should help with that, too. I'm hoping! Thanks again.

Kathy (AIH)

Seattle area

PS: I'll gladly exchange the fat problems for the hair problems! LOL!

[Guest guest]

Kathy,

The cyclosporin doesn't help with the pain that I suffer. My specialist

has me on morphine twice a day, but the symptomatic pain from the

withdrawal comes right through the meds. I can't imagine going through it

without the pain relief. I have suffered pain from the onset of this

disease, unlike a lot here.

I am currently down to 7.5mg of the pred. Hoping to get right off it.

The joint and muscle pain seem to affect my neck, hands, arms and hips the

most.

Personally the cyclosporin hasn't helped with the control of the pain, but

it may be different for you, I hope for your sake it helps.

Have a good weekend.

SueB.

----------

> From: KATBERCOO@...

> onelist

> Subject: Re: [ ] Questions

> Date: Saturday, 26 June 1999 8:16

>

> From: KATBERCOO@...

>

> Dear Sue B.:

>

> Thanks for sharing about the cyclosporin. I'm really hoping I'll be able

to

> take it. How far have you gotten on the weaning off the prednisone? Has

the

> cyclosporin helped with the pain from the pred. withdrawal? The

hepatologist

> said that I've got something going on besides the AIH that's causing all

my

> joint and tendon problems that make the pred. withdrawal painful. He

said

> the cyclosporin should help with that, too. I'm hoping! Thanks again.

>

> Kathy (AIH)

> Seattle area

>

> PS: I'll gladly exchange the fat problems for the hair problems! LOL!

>

> ---------------------------

[Guest guest]

Dear Kaye:

Your comment about looking like an Elvis Impersonator really cracked me up.

The prednisone really made me hairier and the prospect of even more from the

cyclosporin is a little daunting. I'm always joking with my husband about

looking like 'the bearded goat woman from he**' and joking about having to

shave my 'chin whiskers'. I tried that sugar stuff that is supposed to

'whisk unwanted hair away,' but I just ended up with a sticky face and as

much hair as ever!

As for the weight issue and transplant, I'm going to talk to my hepatologist

about it again when I see him in July. I'm going to ask him to be more

specific about it and ask whether it is his personal policy, or just what the

criteria is and what my options are.

As for your not being able to tolerate the Imuran, but being able to tolerate

the prednisone, from what I understand about it, steroids (prednisone) are a

naturally occurring substance in the body (produced by the adrenal glands)

whereas Imuran is a chemo drug used to shut down the immune system. I was

not able to tolerate the Imuran either (it immediately gave me pancreatitis).

Hope that was helpful.

Hope you have a good weekend. Take care!

Kathy (AIH)

Seattle area

[Guest guest]

,

A year ago I needed surgery due to an ulcerated bladder caused by a vault

prolapse. The Gynecological Oncologist (the most qualified gynecologists

to do complex gynecological surgery) said that it would be very high risk

for infection because of Prednisone and wanted to try to treat the ulcer

instead. Of course, because of the Prednisone, it didn't want to heal but

after almost 6 months, it eventually did (whew!) Meantime, another doctor

who specializes in difficult internal organ damage, told me that there are

some internal organs that are very low risk for infection despite the

patient taking long-term immunosuppressant drugs. Later my Hepatologist

told me that women taking Prednisone have relatively risk free

gynecological surgery all of the time.

Point of all this is, the risk seems to be related to the organ or type of

surgery being proposed. Anyhow, I still haven't had the surgery. I've

reached the point where I limit the number of aggravations I let into my

life and if I can survive without a procedure, I don't accept it!

Take care,

Geri

[Guest guest]

Kathy:

What we could do is just let our hair (all of it! Everywhere!) grow and grow and

grow and then go to one of those places that buy hair for wigs and we could MAKE

A FORTUNE!! I'd never have to work again!!

Your explanation about the difference between taking prednisone and imuran

finally made things make sense to me. Thank you. I have learned more from this

group than I have learned from my doctors in 5 years. It's not that the doctors

don't answer my questions, it's just that you can learn so much more from people

who experience it (similar to child birth - men may answer your questions based

on what they see in the delivery room but they would never be able to fully

explain the pain and the exhilaration!) ly, my husband couldn't even

explain what dirty diapers look like!

Well, I have to go. Take care.

Kaye - AIH -Ohio

KATBERCOO@... wrote:

> From: KATBERCOO@...

>

> Dear Kaye:

>

> Your comment about looking like an Elvis Impersonator really cracked me up.

> The prednisone really made me hairier and the prospect of even more from the

> cyclosporin is a little daunting. I'm always joking with my husband about

> looking like 'the bearded goat woman from he**' and joking about having to

> shave my 'chin whiskers'. I tried that sugar stuff that is supposed to

> 'whisk unwanted hair away,' but I just ended up with a sticky face and as

> much hair as ever!

>

> As for the weight issue and transplant, I'm going to talk to my hepatologist

> about it again when I see him in July. I'm going to ask him to be more

> specific about it and ask whether it is his personal policy, or just what the

> criteria is and what my options are.

>

> As for your not being able to tolerate the Imuran, but being able to tolerate

> the prednisone, from what I understand about it, steroids (prednisone) are a

> naturally occurring substance in the body (produced by the adrenal glands)

> whereas Imuran is a chemo drug used to shut down the immune system. I was

> not able to tolerate the Imuran either (it immediately gave me pancreatitis).

> Hope that was helpful.

>

> Hope you have a good weekend. Take care!

>

> Kathy (AIH)

> Seattle area

>

> ---------------------------

[Guest guest]

My son who is 16 is on cyclosporin for 1 year...He had been on other

meds...6mp...pred...he is now off both and doing the best in years...

Luanne Ty's mom

[Guest guest]

Hi Luanne,

How was your son's appointment today? Hope all went well.

[Guest guest]

Hi ..

how are you doing? I had written to tell you about Ty's appointment but I

just realized it was never sent...Sorry..Doctors were very

pleased...ALT's,AST's and GGT's are all coming down...Yea!!!! most of his

other counts are good...the only problems are whites at 2.2 and playlets at

40,000. But they will keep an eye on them...The other good news is he

doesn't have to have weekly labs any more....now every other week...to some

that may not be a huge step but for us it is a GIANT STEP.....

I hope you are doing well...When do you have your next check up? Have a

great holiday week end...

Luanne Ty's mom

[Guest guest]

>From: " milko " <milko@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] Questions

>Date: Sat, 26 Jun 1999 22:09:35 +1000

>MIME-Version: 1.0

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>

>From: " milko " <milko@...>

>

>Kathy,

>The cyclosporin doesn't help with the pain that I suffer. My specialist

>has me on morphine twice a day, but the symptomatic pain from the

>withdrawal comes right through the meds. I can't imagine going through it

>without the pain relief. I have suffered pain from the onset of this

>disease, unlike a lot here.

>I am currently down to 7.5mg of the pred. Hoping to get right off it.

>The joint and muscle pain seem to affect my neck, hands, arms and hips the

>most.

>Personally the cyclosporin hasn't helped with the control of the pain, but

>it may be different for you, I hope for your sake it helps.

>Have a good weekend.

>SueB.

>

>----------

> > From: KATBERCOO@...

> > onelist

> > Subject: Re: [ ] Questions

> > Date: Saturday, 26 June 1999 8:16

> >

> > From: KATBERCOO@...

> >

> > Dear Sue B.:

> >

> > Thanks for sharing about the cyclosporin. I'm really hoping I'll be

>able

>to

> > take it. How far have you gotten on the weaning off the prednisone?

>Has

>the

> > cyclosporin helped with the pain from the pred. withdrawal? The

>hepatologist

> > said that I've got something going on besides the AIH that's causing all

>my

> > joint and tendon problems that make the pred. withdrawal painful. He

>said

> > the cyclosporin should help with that, too. I'm hoping! Thanks again.

> >

> > Kathy (AIH)

> > Seattle area

> >

> > PS: I'll gladly exchange the fat problems for the hair problems! LOL!

Hi Milko,

What IS the cyclosporin supposed to do? I thought it was an antibiotic to

kill germs.

> >

> > ---------------------------

[Guest guest]

,

Cyclosporin is an immunosuppressant. It is along the same lines as Imuran,

I was allergic to Imuran and 2 other drugs they tried, the cyclosporin is

the only one I can tolerate.

SueB.

----------

> From: susan johnson <shireen42@...>

> onelist

> Subject: Re: [ ] Questions

> Date: Thursday, 8 July 1999 18:48

>

> From: susan johnson <shireen42@...>

>

>

>

>

> >From: " milko " <milko@...>

> >Reply- onelist

> >< onelist>

> >Subject: Re: [ ] Questions

> >Date: Sat, 26 Jun 1999 22:09:35 +1000

> >MIME-Version: 1.0

> >From errors-165537-2284-shireen42 Sat Jun 26 05:37:27 1999

> >Received: from [209.207.164.235] by hotmail.com (1.5) with SMTP id

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> >X-MSMail-Priority: Normal

> >X-Priority: 3

> >X-Mailer: Microsoft Internet Mail 4.70.1155

> >Mailing-List: list onelist; contact

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> >Delivered-mailing list onelist

> >Precedence: bulk

> >List-Unsubscribe: <mailto: -unsubscribeONElist>

> >

> >From: " milko " <milko@...>

> >

> >Kathy,

> >The cyclosporin doesn't help with the pain that I suffer. My specialist

> >has me on morphine twice a day, but the symptomatic pain from the

> >withdrawal comes right through the meds. I can't imagine going through

it

> >without the pain relief. I have suffered pain from the onset of this

> >disease, unlike a lot here.

> >I am currently down to 7.5mg of the pred. Hoping to get right off it.

> >The joint and muscle pain seem to affect my neck, hands, arms and hips

the

> >most.

> >Personally the cyclosporin hasn't helped with the control of the pain,

but

> >it may be different for you, I hope for your sake it helps.

> >Have a good weekend.

> >SueB.

> >

> >----------

> > > From: KATBERCOO@...

> > > onelist

> > > Subject: Re: [ ] Questions

> > > Date: Saturday, 26 June 1999 8:16

> > >

> > > From: KATBERCOO@...

> > >

> > > Dear Sue B.:

> > >

> > > Thanks for sharing about the cyclosporin. I'm really hoping I'll be

> >able

> >to

> > > take it. How far have you gotten on the weaning off the prednisone?

> >Has

> >the

> > > cyclosporin helped with the pain from the pred. withdrawal? The

> >hepatologist

> > > said that I've got something going on besides the AIH that's causing

all

> >my

> > > joint and tendon problems that make the pred. withdrawal painful. He

> >said

> > > the cyclosporin should help with that, too. I'm hoping! Thanks

again.

> > >

> > > Kathy (AIH)

> > > Seattle area

> > >

> > > PS: I'll gladly exchange the fat problems for the hair problems!

LOL!

>

>

>

> Hi Milko,

>

> What IS the cyclosporin supposed to do? I thought it was an antibiotic

to

> kill germs.

>

>

> > >

> > > ---------------------------

[Guest guest]

Good Morning,

I have some questions, what is herx, and abx? I think abx is antibiotics?

I'm new to all of this jargon. I'm on 2gm Rocephin Iv. I have very small

veins, so my line is very small. Sometimes it takes 2 hours for it to

finish. I have found certain positions that will make the process a bit

faster, but not much. Any ideas from those who know?

[Guest guest]

>From: " kslink " <kslink@...>

>

>Good Morning,

> I have some questions, what is herx, and abx? I think abx is antibiotics?

>I'm new to all of this jargon. I'm on 2gm Rocephin Iv. I have very small

>veins, so my line is very small. Sometimes it takes 2 hours for it to

>finish. I have found certain positions that will make the process a bit

>faster, but not much. Any ideas from those who know?

>

Hi ,

ABX is antibiotics

HERX are when there is a die-off of the bacteria and they release toxins.

The resultant symptoms are very much like the nasty symptoms you have with

Lyme. Although for me they seem to be more neuropsychiatric than I imaged

they would have been. Don't know why. I had all kinds of other type

symptoms before getting abx.

I am on 2 Grams Rocephin IV too. Mine is infused over an hour. I have a

Groshon PICC line since July 5th. Before that I was weekly tortured with 2

sticks or more a week to get an IV started. And the veins were so small.

The Rocephin burned too. Not any more! Thank goodness for PICC Lines!!!

It took 1 week to adjust to the PICC line as it was causing spasms and

nerve pain in my arm. I occasionally have the nerve pain still. Probably

the bugger is lying next to a nerve.

Kiana Rossi

mailto:bornfree@...

Northern California

[Guest guest]

Morning ,

Welcome to the list, you are correct abx is our abbreviation for

antibiotics. Here is a list of other jargon we use:

LLMD= Lyme literate physician (a very rare being)

DX= Diagnosis

Meds= medicine

RX= Prescription medicine

CNS= Central Nervous system

Bb=Borrelia Burgdorferi (the bacteria we have in our bodies from LD=Lyme

disease

There are more, holler if you have any more questions.

Herx=Abbreviation for Jarish Herxheimer

The Short Definition:

Jarisch-Herxheimer reaction (“herxing”) is an exacerbation of symptoms in

people with Lyme disease (also syphillis) upon taking antibiotics. It is

thought to be due to the effects of toxins produced by the organism during

it’s

die-off and the resulting immune system response.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Much More Detailed Explanation:

from Lyme Disease 1991-patient /physician perspective

Jarisch-Herxheimer Reaction

H. Katzel, M.D.

Dorland’s Illustrated medical Dictionary says this about the

Jarisch-Herxheimer Reaction: “An increase is syphilitic symptoms after

administration of antisyphillitic drugs.” Although it is an illustrated

dictionary, there is no illustration next to the words. I wonder what they

would put next to such a definition......I suppose if they were to

illustrate

the Jarisch-Herxheimer Reaction, they would have to put a patient with

syphilis

or, more recently, a Lyme borreliosis patient standing in fright with

extremities extended and large circles radiating from his eyes. We’re

talking

about one terrible feeling person.

From back in the 1960’s, Professor Harvey described the Herxheimer Reaction

as

an acute febrile reaction which may develope after treatment of late

syphilis

has begun. But Professor Harvey felt that this was a rare phenomena and

such

reactions were more common in patients with paresis, and he felt that they

might be associated with a trasient increase in agitation and confusion as

well

as with fever and convulsions. His suggestion was that small doses of

adrenal

corticosteroids such as 20 mg. prednisone per day usually prevent or

ameliorate the Herxheimer Reaction.

Events similar to this Herxheimer type Reaction have been described in other

disease states. I recently attended a medical conference where an

experienced

middle-aged man physician/pathologist descibed “crashing” and episodes of

death

after one dose of IV penicillin for children with meningoccoccemia. Whether

the death of these children was due to acute, fulminating

Waterhouse-Friderichsen syndrome or whether the deaths were due to a

Herxheimer-type Reaction to one dose of penicillin is still unclear. The

description of these events, which happened 40-50 years ago, is stilll vivid

in

the memories of these physicians. At times they were reluctant (but knew

they

had no choice) in giving the penicillin to these sick children who they knew

would die if not treated and who might die from another cause with

treatment.

The Herxheimer-type Reaction is somewhat different in Lyme....Because Lyme

is

caused by a spirochete, much of what we learn and think about Lyme

borreliosis

comes from our experience with syphilis. In the early stages of killing the

Lyme spirochete (Borrelia burgdorferi) with antibiotics this Hexheimer type

Reaction can be found if looked for. Apparently it comes at different

times.

With I.V. antibiotics it may be noted within days of treatment; with oral

antibiotics it may be noted within days to weeks of treatment. When these

antibiotics begin to destroy the Lyme spirochete, a toxin is given off

causing

either direct reations or indirect actions through stimulation of the immune

system. The symptoms can vary from systemic reactions such as a low blood

pressure, fever,chills and hives, to more specific symptoms such as increase

in

joint pain, headaches, rash or in general, a reversal or worsening of the

Lyme

symptom complex.

Jarisch-Hexheimer Reaction should be watched for when treating Lyme

borreliosis

patients, and the patient should be adequately warned about this phenomenom.

Mistaking the Herxheimer reaction for an allergic reaction to antibiotics or

serum sickness or some other catastrophe might lead to prematurely stopping

the antibiotics on the part of the physician on non-compliance in taking the

medications on the part of the patient. When starting antibiotics, one

expects

to feel better, not worse. But if warned that there may be a period where

symptoms recur or flare up during this reaction , better compliance can be

expected. Herxheimer reactions are at least ten times more common than

true

allergic reactions to antibiotics.

Steroids are not recommended at this time for Herxheimer Reaction in Lyme

patients. The best treatment is knowledge of the process so that panic

attacks, anxiety and worry do not occur. Benadryl, which is an

antihistamine,

can be used to lessen the symptoms, and sometimes changing the dose and/or

timing of the antibiotics is needed to make the reaction less symptomatic.

So next time you start antibiotics, ask your physician whether or not you

should expect a Herxheimer Reaction to occur. It may be a learning

experience

for both of you, I’m not aware of any deaths from Herxheimer Reaction in

treating Lyme borreliosis. So give me a Herxheimer Reaction over an

allergic

reaction any time.”

I have only been on IV abx for six weeks and that was over a year ago, I

used the push method for my IV drugs, where a syringe is attached to the

line and Infused in five minutes. I have read in other forums that it is

best to do a slow infusion, although I can't recall where I read it, and not

sure if it true.

Best to you,

Marta. NJ

>From: " kslink " <kslink@...>

>

>Good Morning,

> I have some questions, what is herx, and abx? I think abx is antibiotics?

>I'm new to all of this jargon. I'm on 2gm Rocephin Iv. I have very small

>veins, so my line is very small. Sometimes it takes 2 hours for it to

>finish. I have found certain positions that will make the process a bit

>faster, but not much. Any ideas from those who know?

>

>

>

[Guest guest]

--- kslink <kslink@...> wrote:

> From: " kslink " <kslink@...>

>

> Good Morning,

> I have some questions, what is herx, and abx? I

> think abx is antibiotics?

> I'm new to all of this jargon. I'm on 2gm Rocephin

> Iv. I have very small

> veins, so my line is very small. Sometimes it takes

> 2 hours for it to

> finish. I have found certain positions that will

> make the process a bit

> faster, but not much. Any ideas from those who

> know?

>

>

> -

Hi and welcome. Sorry this is a little late. I am way behind on mail. I

was on IV Rocephin for 2 months and when we first started it it was 2

grams in 50 cc of saline which was way to strong for me anyway. It

infused over 30 mins and I had severe chest pain with each infusion. My

doc had written the order for it to be 2 grams in 500 cc so he was

upset. When I got the right mixture I would infuse it very slow. Took 2

to 2 1/2 hrs a day but the chest pain was gone and I was able to

tolerate it for the full 2 months. Also my doc feels that the faster

you infuse the more likely to have the gallbladder sludging problems so

thats another thing I was aware of.

Hope this helps.

L(MI)

> ---------------------------

[Guest guest]

<<

Hello, my name is Mares, I'm 20 years old and I have a few quick

questions. First, I would like to say that I enjoy your book " The Cure For

All Diseases " , it's great. I built the zapper, but I don't seem to get any

type of current from it, I don't feel anything when I use it, all of my

connections are correct and it turns on, I just don't feel anything, is that

normal or is there a problem, if so, what should I do about it? Also, I

would like to get on the herbal parasite program, but how long should I be

on the program? Should I use anything else with the herbs such as vitamins,

minerals, certain foods? What exactly causes parasites and what foods

should I stay away from?

Thank you

Sincerely,

Mares >>

Dear ,

You must have been in a hurry while reading Dr 's book? The answer to

all your questions are there in the book. You need to go back and read it

again.

Jan