Questions

[Guest guest]

Hello brnda,

My name is and i am 17. I get bad headaches all the time. I don't

know if it because i get sick a lot or if it is something else. I get

fatigue a lot but not as much as I used to. There are times when I want

nothing more than to sleep all day.

>From: brenda maguire <bmag21@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions

>Date: Fri, 14 May 1999 03:54:51 -0700 (PDT)

>

>From: brenda maguire <bmag21@...>

>

>

>

>Hi

>

>I haven't posted for a while but still enjoy reading everyones

>mail,thanks a lot for all the wonderful information. I have a couple of

>questions that someone might be able to help me with. I have been under

>a lot of stress lately and suffer chronic fatigue,(i even passed out

>when i had my piles banded last week,) and i have always been a strong

>person, is this what i have to look forward to? When i had my liver

>function test it was in the normal range, does this mean my liver is

>OK? I have also suffered migraine for many years, does anyone know of a

>correlation between headache and liver disease? And does anyone else

>suffer with migraines? When i tried hormone replacement therapy during

>menopause i had to stop, due to an increase in migraine, perhaps there

>is a link between hormone induced migraine and AIH dose anyone else

>out there have a similar experience? I seize each day as Geri has

>advised and its amazing what pleasure there is out there

>

>Have a good day

>

>God Bless

>

> AIH

>_________________________________________________________

>

[Guest guest]

Hi

I haven't posted for a while but still enjoy reading everyones

mail,thanks a lot for all the wonderful information. I have a couple of

questions that someone might be able to help me with. I have been under

a lot of stress lately and suffer chronic fatigue,(i even passed out

when i had my piles banded last week,) and i have always been a strong

person, is this what i have to look forward to? When i had my liver

function test it was in the normal range, does this mean my liver is

OK? I have also suffered migraine for many years, does anyone know of a

correlation between headache and liver disease? When i tried hormone

replacement therapy during menopause i had to stop, due to an increase

in migraine, perhaps there is a link between hormone induced migraine

and AIH dose anyone else out there have a similar experience? I seize

each day as Geri has advised and its amazing what pleasure there is out

there

Have a good day

God Bless

AIH

_________________________________________________________

[Guest guest]

Hi

I haven't posted for a while but still enjoy reading everyones

mail,thanks a lot for all the wonderful information. I have a couple of

questions that someone might be able to help me with. I have been under

a lot of stress lately and suffer chronic fatigue,(i even passed out

when i had my piles banded last week,) and i have always been a strong

person, is this what i have to look forward to? When i had my liver

function test it was in the normal range, does this mean my liver is

OK? I have also suffered migraine for many years, does anyone know of a

correlation between headache and liver disease? And does anyone else

suffer with migraines? When i tried hormone replacement therapy during

menopause i had to stop, due to an increase in migraine, perhaps there

is a link between hormone induced migraine and AIH dose anyone else

out there have a similar experience? I seize each day as Geri has

advised and its amazing what pleasure there is out there

Have a good day

God Bless

AIH

_________________________________________________________

[Guest guest]

I have suffered from headaches all through this disease. My doctor recently

said it was because of the prednisone. I think I had some before I started

the meds, but can't remember now. (MY DR. also said memory shouldn't be a

problem, hah!) He said the prednisone raises the blood pressure, that is

what causes the headaches.

Tami (AIH) chollyfam@...

[Guest guest]

Hi ,

I've had a problem with headaches for years, then about 10 years ago they

stopped almost entirely until the past month or so. In my case at least,

hormones weren't the cause since the headaches pre-dated the hormones.

However, I've known many people who have said that hormones cause them to

have terrible headaches. That's often the main reason some women can't

take them.

My liver function tests have been mostly normal for several months, but

it's already been established that I have advanced cirrhosis (stage IV) so

I think that the stable LFTs might mean that the disease is not

progressing. That's certainly something to be grateful for! Anyhow,

normal LFTs after AIH has been diagnosed doesn't seem to mean that you're

cured. But it could mean that you're in remission for your liver disease.

I'd hoped that remission meant that I could go on with my life without

feeling ill. Fat chance of that. There are still side problems, but

probably related to the meds and some of the things that a not entirely

well liver can cause.

You're right, there's happiness and pleasure out there. We just have to be

receptive to it. Sometimes easier said than done... I no longer live in

dread of what might happen tomorrow or next month. Each day when I wake

up, I assume it's going to be a good day until proven otherwise. And even

when it's not great, I remind myself that I've had worse.

Take care,

Geri

[Guest guest]

Hi Terry,

I don't know what to tell you, but there are others on this site that are

very medically knowledgeable and will probably have more insight, but I can

tell you that prior to treatment, my liver functions were abnormal and have

since gotten better with the treatment. I read an e-mail from someone else

who was also having problems with their liver. Don't know for sure, but it's

possible that the liver problems is a symptom of the disease and not from the

drugs.

Helen from MI

[Guest guest]

Terry

Have you been tested for co-infections?

In a message dated 5/31/99 12:17:06 AM Eastern Daylight Time,

rivrfolk@... writes:

<>

[Guest guest]

Hi Terry,

I am sorry you are feeling so bad, especially with the digestive trouble

on top of having Lyme disease. You ask some mighty tough questions,

especially when do you get better? No one knows that one for sure....do you

think you are herxing? You did not mention that specifically, I would think

with the increased dosage of Zithromax that you would be. Are you on any

other abx in combination? I hope someone on this list can help you with

advice on the digestive problems, I rarely get indigestion but when I do I

am afraid to take antacids, as they don't mix well with abx. Years ago I

took Carafate (an ulcer med) with the doxycycline I was first given for

Lyme, neither the doctor nor the pharmacist told me not to, I had been

taking the Carafate for years in order to tolerate a pain medicine. The

Carafate caused the doxy to ball up in my stomach, it never entered my

bloodstream, I was really sick, and I attribute this error to my chronic

Lyme disease, mainly as I was not treated promptly. I wonder if this could

be happening to you too, just a thought to consider. Talk this over with

your doctor.

Here are reasons why the WB can be skewed....it says Nine reasons, but I

only see eight???

Nine reasons for false negative Lyme disease test results:

The Lyme Disease Foundation (LDF), in their brochure entitled " LDF

Frequently Asked Questions About Lyme Disease " lists the following

nine reasons for false negative Lyme disease test results:

[brackets contain my words]

a. Antibodies against Bb are present, but the laboratory is unable to

detect them. [borrelia burgdorferi (Bb) is the Lyme disease bacteria.]

b. Antibodies against Bb may not be present in detectable levels in

patients with Lyme disease. Reasons are listed below.

1. The patient is currently on, or has recently taken, antibiotics.

The antibacterial effect of antibiotics can reduce the body's production

of antibodies.

2. The patient is currently on or has previously taken

anti-inflammatory steroidal drugs (such as those taken to treat

rheumatoid arthritis) or certain anticancer drugs. These can suppress a

person's immune system, thus reducing or preventing an antibody

response.

3. The patient's antibodies may be bound with the bacteria with not

enough free antibodies available for testing. [i think this reason is

very important and prevalent. For this reason, some of the worst cases

of Lyme disease test negative - too much bacteria for the immune system

to handle.]

4. The patient could be immunosuppressed for a number of other

reasons and the immune system is not reacting to the bacterium.

5. The bacterium has changed its makeup (antigenic shift) limiting

recognition by the patient's immune system.

6. The patient's immune response has not been stimulated to produce

antibodies, i.e., the blood test is taken too soon after the tick-bite

(2-6 weeks). Please do not interpret this statement as implying that

you should wait for a positive test to begin treatment.

7. The laboratory has raised its cutoff so high that a patient's

previously positive test is now borderline or negative.

8. The patient is reacting to the Lyme bacterium, but is not

producing the " right " bands to be considered positive.

My best to you,

Hugs,

Marta

>From: " terry baradine " <rivrfolk@...>

>

>hi all i have some questions. I have been on antibiotics since March but

>not rreally improving too well. I just started on Zithromax 500 mgs about

ll

>days ago. before that i was only on 250mgs a day. When do you get better.

>Also, what can cause false postiives on test results. i have had one

>positive igm and then negatvie test results since then. i am scared i am

>going in the wrong direction. i also have terrible digestive trouble (this

>was present before antibiotics) and am using lots of acidophilus. i feel

>like just throwing in the towel. do you get better or just mediocre on

>meds? my liver is giving me trouble too.. any advice would be appreciated.

>i just don't know what to think anymore. thanks, terry

>

[Guest guest]

Dear Terry,

PRAY LIKE CRAZY, HON! Seriously!

Will pray for you too.

Take care and god Bless!

Mel

(mom to 4-one with autism)

[Lyme-aid] questions

>From: " terry baradine " <rivrfolk@...>

>

>hi all i have some questions. I have been on antibiotics since March but

>not rreally improving too well. I just started on Zithromax 500 mgs about

ll

>days ago. before that i was only on 250mgs a day. When do you get better.

>Also, what can cause false postiives on test results. i have had one

>positive igm and then negatvie test results since then. i am scared i am

>going in the wrong direction. i also have terrible digestive trouble (this

>was present before antibiotics) and am using lots of acidophilus. i feel

>like just throwing in the towel. do you get better or just mediocre on

>meds? my liver is giving me trouble too.. any advice would be appreciated.

>i just don't know what to think anymore. thanks, terry

>

>

>_______________________________________________________________

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[Guest guest]

Hi Terry, I just read your post and I think it is very important that you

trust the dr you are seeing and discuss these things with he/she. Lyme

disease must be a clinical diagnosis the tests are way to unreliable to go

by. If you have all clinical symptoms of LYme than it is probable that you do

have the disease and if you have had it for a long time without treatment

than you definately need more aggresive therapy or you will never get better.

do you have a good LLMD? I don't know how long you have had symptoms but I

know that 250 mgs of Zithro is not considerd a high dose at all. You should

also ask about adding amantadine or plaquinel to this drug as much better

results have been reported with them. If you are in need of another Dr.

please let me know where you live and I or someone on this list will try ot

help you locate someone. PS. Please look at Dr. B's treatment prootocol which

can be found at www.Lymenet.org It is very helpful in discovering if you

really have this disease and what are the best traeatment options. Good Luck

May you feel better shortly-Val

[Guest guest]

Agreed with digestive enzymes: PAPAIN AND BROMELAIN (papaya and pineapple

extracts,) to be specific. Is already helping my best friend with lyme

(swelling and stinging pain) within DAYS!!

Mel

(mom to 4)

Re: [Lyme-aid] questions

>From: Cslyme@...

>

>HI Terry,

>One of our LLMD suggests " Digestive enzymes " anyway that is what it says on

>the bottle. The seem to help me somewhat with stomach problems.

>Connie, MI

>

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[Guest guest]

terry,

the digestive problems could be a lyme sym,ptom i suffered from them for 2

years since it took that long to be dx'ed with lyme (i am now disabled and

chronic on ssd at 41) ......the best u can hope for as far as accuracy on

test is about 40 %......the test are just not accurate and that rate only

applys to a lab such as igenex or stoney brook.....local labs here in nj well

some have never shown a positive test ......there is work being done on new

test but i feel a reliable test is going to be long in coming adding to our

problem......alot of docs haver the mindset that they want to see +

test.......but with lyme it is a clinacla dx......by symptoms.........find a

llmd is ur best bet

Reid

[Guest guest]

HI Terry,

One of our LLMD suggests " Digestive enzymes " anyway that is what it says on

the bottle. The seem to help me somewhat with stomach problems.

Connie, MI

[Guest guest]

In a message dated 5/31/99 4:48:09 AM Eastern Daylight Time,

mlmccoy@... writes:

<< Years ago I

took Carafate (an ulcer med) with the doxycycline I was first given for

Lyme, neither the doctor nor the pharmacist told me not to, I had been

taking the Carafate for years in order to tolerate a pain medicine. The

Carafate caused the doxy to ball up in my stomach, it never entered my

bloodstream, I was really sick, and I attribute this error to my chronic >>

Martha,

I am taking carafate. Should I question my doctor about this?

Thanks,

[Guest guest]

Hi ,

Only if you are taking doxy at the same time you take the carafate. That

was my mistake....if you are not having awful bowel problems, you are OK. I

am scanning information about this drug from my RX book and mailing to you

privately.

Hugs,

Marta

>From: Prinny328@...

>

>Martha,

>I am taking carafate. Should I question my doctor about this?

>

>Thanks,

>

>

[Guest guest]

In a message dated 6/1/99 4:47:34 AM Eastern Daylight Time,

mlmccoy@... writes:

<<

Hi ,

Only if you are taking doxy at the same time you take the carafate. That

was my mistake....if you are not having awful bowel problems, you are OK. I

am scanning information about this drug from my RX book and mailing to you

privately.

Hugs,

Marta >>

Martha,

Thank you soo much for the information on carafate. Your the best!!

Thanks,

[Guest guest]

Hi Debbie,

Could you ask if he thinks it would be advisable for an AIH post transplant to

get the HepA and HepB vaccine, does he think it could stimulate the immune

system into action?

Only ask if you don't have too many questions from others in the group. OK

Thanks a million,

---

Barbara Ann

AIH transplant recipient

On Tue, 1 Jun 1999 20:23:34 Debbie wrote:

>Hi All:

>

>I'm seeing my GI tommorow at U of M and would be willing to ask him any

questions that anyone from the group may have. Wish me luck : )

>

>Debbie

>AIH

>Michigan

>

>

Get your FREE Email at http://mailcity.lycos.com

Get your PERSONALIZED START PAGE at http://my.lycos.com

[Guest guest]

I received this yesterday from Bruce and asked his permission to post it

here. (He said yes!) In my answer to him I said that he was indeed VERY

lucky to have been diagnosed after only having been infected one day.

However, I also said he should ask his Dr. for six weeks of doxy because two

weeks is not enough. If anyone would like to add to that or has any other

thoughts, please reply to Bruce at his address. Thanks!!

Ann

Re: Questions

> Hi Jean

> here's the story.Yesterday I took my youth group paintballing. At night

> I noticed a red circle that expanded this morning. We thought it was a

> brown recluse spider. So into the ER I went and they told me it was the

> start of Lymes. I am taking as of today 100mg of Doxy twice a day. The

> doc gave me 28 capsules. Thats it. I have had a slight fever. He said it

> was in the very early stages ( 1 day?) but gave me no other information.

> He said i was lucky to catch it early but other than that I know

> nothing. so any info you can give would e helpful. One question: Is this

> a recurring disease or once cured you're pretty well safe.

>

> For the sake of the Call,

> Bruce E. Pringlemeir

>

> CAPS-Homeward Bound!

> http://members.tripod.com/~CAPS1701

>

[Guest guest]

Kaye,

It could be the prednisone. i know when I was on Prednisone I felt like

that all the time.

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

>Reply- onelist

> " onelist " < onelist>

>Subject: [ ] Questions

>Date: Mon, 21 Jun 1999 13:33:05 -0400

>

>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)_

>

>

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>

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[Guest guest]

Hi Kaye -

From my own experience and from input from my GI .. the symptoms you

describe are common with long term use of prednisone.

Debbie

AIH

Michigan

[ ] 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 Barbara -

I forgot to answer this posting of yours. I asked my GI about the

vaccination for an AIH post transplant HepA and HepB .. he said no it would

not stimulate the immune system into action.

Debbie

AIH

Michigan

Re: [ ] Questions

>From: " barbara ann " <barbara-ann@...>

>

>Hi Debbie,

>Could you ask if he thinks it would be advisable for an AIH post transplant

to get the HepA and HepB vaccine, does he think it could stimulate the

immune system into action?

>Only ask if you don't have too many questions from others in the group. OK

>Thanks a million,

>---

>Barbara Ann

>AIH transplant recipient

>

>

>

>

>On Tue, 1 Jun 1999 20:23:34 Debbie wrote:

>>Hi All:

>>

>>I'm seeing my GI tommorow at U of M and would be willing to ask him any

questions that anyone from the group may have. Wish me luck : )

>>

>>Debbie

>>AIH

>>Michigan

>>

>>

>

>

>Get your FREE Email at http://mailcity.lycos.com

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[Guest guest]

Kaye:

I still have all the aches and pains etc and I have been on it since October

1997. One thing hurts and then go away and another part of my body hurts. I

guess it is the desease.

Sue AIH

Wisconsin

[Guest guest]

Thank you all for your responses. I continue to learn much for your

discussions and may pop in for a few questions. This is all so new (though

definitely not the symptoms) that I don't know if I can absorb it all.

Elaine:

You recommended I see a Hepotologist which is something I was

wondering about. What type of doctor should I see? I just assumed a gastro.

and made an appointment there. Does a Hepotologist specialize in liver

diseases? If so, I feel it would definitely be best to start there.

Also, it was recommended by several in this group that I have blood

tests done for liver problems. Before my Mom's surgery, she was given

routine blood tests which showed nothing to concern the doctors. However,

they were shocked when they discovered during the surgery at how damaged her

liver was - final stage of cirrhosis! They said that had they known, they

never would have done the surgery because people with such a damaged liver

have a very difficult time overcoming surgery and thus, she didn't. My

question is this: Do the blood tests not always show if you're having liver

problems?

Also, looking back I can see that my Mom has had Sjogen's (sp?)

disease for a long time. She always had a glass of water with her and

complained of thirst. Even in the hospital before she died, she kept asking

the doctor why she was so thirsty and his reply was that it must be the

medication. My word, she was a textbook case, how could they NOT see it! I

am so disappointed that doctors did not put the symptoms together for her or

myself. It will be a relief to find some answers after not knowing for so

long.

Thanks for

this group,

Judy

[Guest guest]

A Dixie Answer.... I have been on the Imuran and Prednisone for 3 years

and still have all of the original symptoms... The joint pain, tendon

pulling, lumps under my skin and itching, all you have mentioned and etc....

have all increased for me... My eyes have gotten worse... and osteoproses

(sp) has settled in my neck and lower back.. That is the way it is for

me Love and Light Dixie

Kaye Gillis wrote:

> 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

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[Guest guest]

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