New to List

[Guest guest]

Jaqui,

YOU NEED a lyme literate dr........and NOW!.......those reactions to

antibiotics with a worsening of symptoms (in my lymers opinion and Im on

my 2nd case of this disease) is what they refer to as a jerisch

herxheimer reaction.....it is a worsening of symptoms as the bacteria

die off and release toxins into your blood stream......the WORST THING

you can do is STOP taking antibiotics at this time...

A BULLS EYE RASH is the definitive clinical diagnostic tool for

lyme........your body takes at least 6 weeks to form antibodies to lyme

and since your first test was given so close to the tick bite time and

you were then put on antibiotics your immune system MAY NEVER produce

enough antibodies to have you come up with a positive test....BUT that

DOES NOT mean you dont have LYME!

The ealier lyme is caught and AGGRESSIVELY TREATED the better your

chances are for recovery......I have heard there is a good lyme literate

dr in Fort Lauderdale...........Dr Perlmutter.......PLEASE do not delay

in seeking an EXPERT!........lymebrain

[Guest guest]

In a message dated 5/16/1999 11:44:30 AM Eastern Daylight Time,

srb13741@... writes:

<< .the WORST THING

you can do is STOP taking antibiotics at this time... >>

Jaqui:

I agree wholeheartedly that you should RUN to a lyme literate physician,

however, you did mention that you have had sensitivities to medications in

the past and I would not ASSUME that you are having a simple herx reaction to

the antiobiotics. Although, it is very possible that you are having a herx,

with your history with medication, I don't think stopping the meds would do

that much harm ( this could be an allergic reaction ) as long as you can get

to a lyme literate doctor ASAP. Just my opinion. Mona

[Guest guest]

I wanted to thank everyone for all of your wonderful responses - on and off

list. What a wonderful group !!

: - )

I am going to my doctor for a follow up this week with a pile of

information and print outs ( LOL) and from an e-mail I just received,

someone is setting up a consultation situation for me where my doctor can

consult with Dr. Perlmutter and possibly several other Lyme literate docs

(whew!!), This disease is really confounding and then on top of it to have

to do all of the work of informing ( some) of the doctors is mind boggling !

I feel so badly for the folks who - some even having the bullseye rash , get

a negative test result and are sent home thinking they are ok - such a sad

occurance. I know I will be doing everything I can to help spread the

information. Can anyone tell me what the Western Blot test is? SHould I

ask my doctor for that? I have been informed that the and the

anti-bodies test are one and the same.

Thanks so much again

Jaqui

" Consciousness: That annoying time between naps...... "

Re: [Lyme-aid] new to list

>From: sherri borgquist <srb13741@...>

>

>Jaqui,

>

>YOU NEED a lyme literate dr........and NOW!.......those reactions to

>antibiotics with a worsening of symptoms (in my lymers opinion and Im on

>my 2nd case of this disease) is what they refer to as a jerisch

>herxheimer reaction.....it is a worsening of symptoms as the bacteria

>die off and release toxins into your blood stream......the WORST THING

>you can do is STOP taking antibiotics at this time...

>

>A BULLS EYE RASH is the definitive clinical diagnostic tool for

>lyme........your body takes at least 6 weeks to form antibodies to lyme

>and since your first test was given so close to the tick bite time and

>you were then put on antibiotics your immune system MAY NEVER produce

>enough antibodies to have you come up with a positive test....BUT that

>DOES NOT mean you dont have LYME!

>

>The ealier lyme is caught and AGGRESSIVELY TREATED the better your

>chances are for recovery......I have heard there is a good lyme literate

>dr in Fort Lauderdale...........Dr Perlmutter.......PLEASE do not delay

>in seeking an EXPERT!........lymebrain

>

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

>ONElist: the best source for group communications.

>

>Join a new list today!

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

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

[Guest guest]

Jaqui,

Because of your sensitivity to meds, it would be hard to tell if you get

worse on them could possibly be having a Herkshiemer reaction. That is when

the litlle buggers are being killed off. You can get very ill with these. If

that is what they are, it is a good sign that the antibiotics are working.

(Imean you can get very ill until it passes)

I do not know nuch about all of the tests. You should try and find a good

Lyme literate doctor. They will take all the proper tests that you need,

including checking for co-infections....Your symptoms to the meds sound very

similar to some of the ones I have during a herks.......

[Lyme-aid] new to list

Hi,

I just signed on to the list and I wanted to say hello & introduce myself.

My name is Jaqui, I am in Florida and just aquired Lyme disease in the past

several months. I was bitten by a tick about 3 months ago and I had the

characteristic bullseye rash. My doctor was able to see me

while I had the rash and he prescribed doxycline right away. He did a Lyme

anti-bodies test within the first week I was bitten and he repeated it 3 1/2

weeks later. Both of these tests came back negative. I only tolerated the

doxycycline for 5 days. I had to discontinue it due to a bad reaction. My doctor

changed me to Amoxicillin and I can tolerate that even less. Currently I am

taking about 100 mg of amoxicillin once a day. I can tolerate it for 2 days but

on the 3rd day I have horrendous symptoms and have even considered going to the

hospital - near loss of vision, much difficulty breathing etc ... I discontinue

the medication for about 5 days and then I feel like myself again and I go back

on the medication for 2 days and it works fine and again on the 3rd day - same

reaction. I have been going through this cycle for the past 2 and 1/2 months. I

am scheduled to follow up with my doctor this week.

I have a history of a severe hypersensitivity to medication which I have had

for many years. I usually cannot tolerate any medications - not even aspirin or

tylenol - and I have landed in the emergency room more times than I can even

count when trying various medications, on one ocassion my heart stoped and I had

to be resucitated. My reactions to medications are usually quite profound and

serious. On the rare ocassion that I can tolerate a medication, I can usually

only tolerate 1/4 of a children's dosage. So, when I aquired Lyme Disease - it

was the first time in almost 10 years that I tried a full dose of any mediction.

My doctors have all refrained from prescribing anything for me for years because

of my medication hypersensitivities. I recently had major surgery and my

surgeons refused to use a standard IV

anti - biotic for major abdominal surgery because of my reactions. I am

concerned because I know the usual treatment for Lyme is very very high doses of

anti-biotics and there is no way I can even come close to taking the treatment.

Has anyone experienced this problem or does anyone have any suggestions? The

bullseye rash is almost entirely faded. There's still a faint bit of it left but

not much. Everytime Itake anti-biotics it does seem to go away a bit more.

The doctors in Florida are not very knowledgeable regarding Lyme Disease and

since my anti-bodies tests came back negative - my doctor is not concerned. He

said to tolerate whatever of themedication that I can, as I can, take breaks

when needed but he instructed me to finish all

the medication. At the rate I am tolerating the meds - it will take me until

winter to finish whatis a normal 6 week prescription for most people - mind you,

I'm not complaing about this but Iam wondering if it's really enough to kill of

the Lyme parasites ?

I was wondering if there are other tests besides the anti-bodies test that I

should ask my doctor for? I see other tests named such as an and western

blot but Ihave no knowledge of these tests and do not know if they are more

comprehensive than the anti-bodies test ? I feel that even though my anti-bodies

test was negative, I still have the Lyme because my symptoms are getting worse

as time goes on and I don't think my doctor is going to pursue any other

avenues of treatment unless a different test somes back positive. So, is it

worth me trying to get these other tests?

I also have a strange medical history in that I have developed a lot of odd

symptoms over the past 4 years. I have seen over a dozen specialists and no one

can figure out what else is going on to explain my other symproms - crazy blood

pressure high and lows and I can't tolerate any pressure changes - light

sensitivity - blurred vision - breathing difficulties - etc ... too many

symptoms to go into all of them but I was bitten by a tick about 4 years ago but

never developed a rash or sought any treatment for that tick bite. I was un

aware of the dangers of Lyme until I was bit this recent time and developed the

bullseye rash.

I'm sorry for this rather long letter but I was wondering if anyone can help

explain tome what these other tests are and if I should get them. Also, if this

tick from 4 years ago gave me Lyme - could this be why I am having trouble with

these anti-biotics at such low doses ? I am wondering what is the treatment

for Lyme when a person has had it 4 years as opposed to 3 months - incase I've

had it since the first bite.

Thanks to anyone who was able toread all of this and actually make it tot he

bottom of this letter. I appreciate it very much and look forward to

contributing to the list in any way that Ican.

Sincerely,

Jaqui

" Consciousness: That annoying time between naps...... "

[Guest guest]

At 07:51 AM 5/16/99 -0400, you wrote:

> Hi, & introduce myself. My name is Jaqui, I am in Florida and just

>aquired Lyme disease in the past several months. I was bitten by a tick

>about 3 months ago and I had the characteristic bullseye rash. My doctor

>was able to see me doxycline right away. He did a Lyme anti-bodies test

>within the first week I was bitten Both of these tests came back

>negative. I only tolerated the doxycycline for 5 days. I had to

>discontinue it due to a bad reaction.

Hi Jaqui,

It from what you have said, it sounds like you have had Lyme for a long time.

Where in Florida do you live? I am in the panhandle (Destin).

Are you familiar with the Jarisch-Herxheimer reaction? That is a severe

increase in

Lyme symptoms while on antibiotics. It is a result of the dead spirochetes

giving

off a toxin. The body has trouble getting rid of the toxin. Although it

is very

troublesome and scary, it is a good sign that the antibiotic is working.

Many folks infected with Lyme have,tragically, thought it was an allergy, and

discontinued the antibiotics, letting the Lyme disease run wild.

Please discuss this with your MD.

God Bless,

Colby Van Atta

[Guest guest]

Hi Jacqi,

I think it is part of a herx and reaction to meds. Maybe a childs dose would

work until you can work up to a full dose. I also think you should not stop

the abx. You can also got an allergist and request to be desensitized to the

drugs so you can take them. Welcome to the list. I hope we can help you.

Hugs,

Connie, MI

[Guest guest]

--- Van Ness <jaqui@...> wrote:

> From: " Van Ness " <jaqui@...>

>

>

>

> I wanted to thank everyone for all of your wonderful

> responses - on and off

> list. What a wonderful group !!

> : - )

>

> I am going to my doctor for a follow up this week

> with a pile of

> information and print outs ( LOL) and from an

> e-mail I just received,

> someone is setting up a consultation situation for

> me where my doctor can

> consult with Dr. Perlmutter and possibly several

> other Lyme literate docs

> (whew!!), This disease is really confounding and

> then on top of it to have

> to do all of the work of informing ( some) of the

> doctors is mind boggling !

> I feel so badly for the folks who - some even having

> the bullseye rash , get

> a negative test result and are sent home thinking

> they are ok - such a sad

> occurance. I know I will be doing everything I can

> to help spread the

> information. Can anyone tell me what the Western

> Blot test is? SHould I

> ask my doctor for that? I have been informed that

> the and the

> anti-bodies test are one and the same.

>

> Thanks so much again

> Jaqui

>

>

> Jaqui-

A western blot is supposed to confirm a pos ELISA. However we all know

how accurate that is. And even when the WB comes back pos alot of docs

will tell you it is false pos. I had 5 all pos and was told they were a

crossreactive pos. That it was not Lyme but something else. Yet they

couldnt tell me what the something else was nor would they treat me for

" something else " . My new doc which is LL did blood cultures and

confirmed that I do have the bacterium in my blood and that it was not

a crossreactive pos test.

The biggest thing is finding a doc that KNOWS about Lyme. Not just

claims to know. The way I tested my doc was to ask him questions that

if he answered according to Dr. Burrascano i knew he was ok. In fact my

doc follows Dr. Bs protocol all the way. He even had a copy of the

protocol there for his pts. I am so lucky to have found him. Had I not

found this group and all the wonderful people in it I would still not

be geting treatment. Hope this helps. Take care

L(MI)

>

>

> " Consciousness: That annoying time between

> naps...... "

> Re: [Lyme-aid] new to list

>

>

> >From: sherri borgquist <srb13741@...>

> >

> >Jaqui,

> >

> >YOU NEED a lyme literate dr........and

> NOW!.......those reactions to

> >antibiotics with a worsening of symptoms (in my

> lymers opinion and Im on

> >my 2nd case of this disease) is what they refer to

> as a jerisch

> >herxheimer reaction.....it is a worsening of

> symptoms as the bacteria

> >die off and release toxins into your blood

> stream......the WORST THING

> >you can do is STOP taking antibiotics at this

> time...

> >

> >A BULLS EYE RASH is the definitive clinical

> diagnostic tool for

> >lyme........your body takes at least 6 weeks to

> form antibodies to lyme

> >and since your first test was given so close to the

> tick bite time and

> >you were then put on antibiotics your immune system

> MAY NEVER produce

> >enough antibodies to have you come up with a

> positive test....BUT that

> >DOES NOT mean you dont have LYME!

> >

> >The ealier lyme is caught and AGGRESSIVELY TREATED

> the better your

> >chances are for recovery......I have heard there is

> a good lyme literate

> >dr in Fort Lauderdale...........Dr

> Perlmutter.......PLEASE do not delay

> >in seeking an EXPERT!........lymebrain

> >

>

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

> >ONElist: the best source for group communications.

> >

> >Join a new list today!

>

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

> >Please send privately messages unrelated to lyme.

> >/archives.cgi/

> >/archives.cgi/Lyme-Docs

> >Email: -subscribeonelist

> >You may substitute " unsubscribe " , " digest " , or

> " normal " for

> >the word " subscribe " ( " normal " is the opposite of

> " digest " )

>

>

>

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

> Give back to your community through " Grow to Give. "

> http://www.ONElist.com

> See homepage for details.

>

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

> Please send privately messages unrelated to lyme.

> /archives.cgi/

> /archives.cgi/Lyme-Docs

> Email: -subscribeonelist

> You may substitute " unsubscribe " , " digest " , or

> " normal " for

> the word " subscribe " ( " normal " is the opposite of

> " digest " )

>

_____________________________________________________________

[Guest guest]

jaqui,

first about the tests.....check out the Igenex site(www.igenex.com) this is

THE lad for lyme testing......on the web site they have a section that

explains all the test available.....they have some that only they do.......as

far as the symptoms ...what u have been going thru the past couple of years

does sound like lyme.....remeber one thing any test is at best only 40 %

accurate......lyme is aclinacal diagnoses.....as ffar as flair ups from the

abx......i hate to say this but.......when the abx's are battling the lyme

spirochettes u usually feel like hell......worse than normal it is called a

herxheimer reaction.....they are normal the let u know that the med sare

working ......lyme is also cycular.....with symptoms worsenbing every 4

weeeks or so.......yep just like another period or for us guys our first

experiance with one......there are some good sites out there.....try them and

keep in touch on this forum......its a bunch of caring lyme smart

people.....sites:

www.lymealliance.org

www.lyme.org

these are some of my favorites.......u may also want to get " everything u

need to know about lyme disease....by karen forstner......it is a must read

for all lymies(no karen does NOT pay me to say that.....lol) hope that helpes

keep in touch

\Reid

[Guest guest]

Hi Jaqui,

Has anyone answered your questions so far? If not, I'd be happy to try. You

might want to visit the Igenex site <www.igenex.com> for info on the various

Lyme tests. Their number is : 1-800-832-3200. I have had Lyme for 20+ yrs and

our four sons have had it 9, 7, 4, and 2 yrs, respectively. Let me know if

you haven't had your questions answered by someone else.

p.s. Did you ever live in Bethel Park, PA?

[Guest guest]

Hi,I am Serena and I believe I have had Lyme for thirty years.I am still

being treared,still neurologically compromised and always looking for the

answers,lol.My husband has it but so far remains functional and my 16 yr old

son has missed ayear and a half of High school due to this horrible disease.I

would love to talk to you as another mom who is ill yet must still cope with

the family issues as well.Maybe we could share some ideas and thoughts.Hang

in there.

Sincerely,Serenabee (Serena)

[Guest guest]

--- SerenaBee@... wrote:

> From: SerenaBee@...

>

> Hi,I am Serena and I believe I have had Lyme for

> thirty years.I am still

> being treared,still neurologically compromised and

> always looking for the

> answers,lol.My husband has it but so far remains

> functional and my 16 yr old

> son has missed ayear and a half of High school due

> to this horrible disease.I

> would love to talk to you as another mom who is ill

> yet must still cope with

> the family issues as well.Maybe we could share some

> ideas and thoughts.Hang

> in there.

> Sincerely,Serenabee (Serena)

>

> Hi Serena-

I am a single mom with 3 wonderful kids ages 15,14 and 5. It is hard

for all of us to deal with the day to day BS of never knowing when mom

will be able to do something. Plus the extra burden on the older kids

of keeping the house picked up and doing the cooking and laundry

because I just cant get out of bed on alot of days. Not to mention the

financial burden we have because there is no money coming in at this

point. I am awaiting appeal decisions from both my LTD at work and SSI.

To make matters worse my oldest daughter (the 14 yr old) has been

having some strange symptoms since Jan. The Neurologist dxed her with

Migrains but when I asked my LLD about it he wants to see her and

probably do the whole lab routine. Im sure if he feels from a clinical

stand point she may be infected he will start her on antibiotics. She

is terrified because she sees me with my line for my IV and doesnt want

to go thru that. We are all hoping that she isnt infected as well.

Guess time will tell.

Take care . L(MI)

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

> Looking for a new hobby? Want to make a new friend?

>

>

> Come join one of the nearly 150,000 e-mail

> communities at ONElist!

>

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

> Please send privately messages unrelated to lyme.

> /archives.cgi/

> /archives.cgi/Lyme-Docs

> Email: -subscribeonelist

> You may substitute " unsubscribe " , " digest " , or

> " normal " for

> the word " subscribe " ( " normal " is the opposite of

> " digest " )

>

_____________________________________________________________

[Guest guest]

Hi ,

Welcome to the list, I am glad you were able to find the information you

needed on the archives. I still haven't figured out how to access them and

I should know better as I am a co-moderator! Could you tell us what state

you live in? We are always curious and it helps us to be able to answer

your questions better too. I hope this primary care doctor you are seeing

is the answer to your prayers, sad that you had to suffer 6 years until you

got a proper diagnosis,

Best to you,

Marta NJ

>From: kslink@...

>

>Hi,

>My name is and have been dx since May but just started iv

treatment a week and a half ago. I have many questions, but found most of

them answered in the archives.

>I have been sick on and off for 6 years, diagnosed with autoimmune hepatits

and a multitude of other ailments until I changed primary care Dr. in Jan.

she has been great finding the Docters to properly diagnose and treat.

( Hope))

>

[Guest guest]

Hi Marta,

I was not able to access the archives thru the instructions from Harry. I

belong to a list for Auto-Immune Hepatitis. If you go to the onelist site

and login it will list the groups you belong to. Just click on Lyme-aid and

you will be able to click on the archives. You can also see who else

belongs to the group.

I live in Stamford, Connecticut. I have two dogs(retrievers) and a cat.

Even though I've been sick for 6 years, I've been treated for the past two

years for Hypothyroidism and Auto-Immune Hepatitis. Now my hepatologist

thinks all of this may be caused by the Lyme. I am keeping my fingers

crossed. It took finding a great primary care.

Thanks

CT

From: " J & M McCoy " <mlmccoy@...>

Hi ,

Welcome to the list, I am glad you were able to find the information you

needed on the archives. I still haven't figured out how to access them and

I should know better as I am a co-moderator! Could you tell us what state

you live in? We are always curious and it helps us to be able to answer

your questions better too. I hope this primary care doctor you are seeing

is the answer to your prayers, sad that you had to suffer 6 years until you

got a proper diagnosis,

Best to you,

Marta NJ

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

[Guest guest]

Hi ,

Thanks for the info, I tried it and realized that because I have a

download program called Gozilla installed, this is what was preventing me

from accessing the files, I finally figured out how to bypass that program.

Congrats on finding that good primary care doctor, they are very rare. Hope

you enjoy the list.

Hugs,

Marta

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

>

>Hi Marta,

>I was not able to access the archives thru the instructions from Harry. I

>belong to a list for Auto-Immune Hepatitis. If you go to the onelist site

>and login it will list the groups you belong to. Just click on

and

>you will be able to click on the archives. You can also see who else

>belongs to the group.

>I live in Stamford, Connecticut. I have two dogs(retrievers) and a cat.

>Even though I've been sick for 6 years, I've been treated for the past two

>years for Hypothyroidism and Auto-Immune Hepatitis. Now my hepatologist

>thinks all of this may be caused by the Lyme. I am keeping my fingers

>crossed. It took finding a great primary care.

>Thanks

> CT

>

[Guest guest]

Welcome Nina, there are a lot of very nice informative people on this list

that will be able to help you a bunch. However, I am not one of them. I am

in the learning stages too, I ask more questions than give answers.You will

learn a bunch here. Lynn in Washington AIH

Nina wrote:

> From: Nina <ncampbell@...>

>

> Hello everyone! I just subscribed this evening. I have primary biliary

> cirrhosis. I was just diagnosed a month ago and had a liver biopsy 10

> days ago. I am awaiting the lab results right now.

>

> Anything you can do to educate me concerning PBC or living with a liver

> disease will be greatly appreciated.

>

> Nina

> Texas

>

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

[Guest guest]

Welcome Nina

Sorry to learn that you have PBC. Once you have your biopsy results you will

have a better idea of where you are. What were your symptoms? Do they know

how long you have had the disease? Lots of great people in this group. Look

forward to hearing from you soon.

Regards

Mark Gray (AIH from Aussie Land)

[ ] New to List

> From: Nina <ncampbell@...>

>

> Hello everyone! I just subscribed this evening. I have primary biliary

> cirrhosis. I was just diagnosed a month ago and had a liver biopsy 10

> days ago. I am awaiting the lab results right now.

>

> Anything you can do to educate me concerning PBC or living with a liver

> disease will be greatly appreciated.

>

> Nina

> Texas

>

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

[Guest guest]

----------

> Mark,

Where in Australia are you, I am in Northern New South Wales.

SueB.

[Guest guest]

Hi,

I am sorry to hear about your liver disease. You also may be interested

in joining the list for people with PBC. The home page is at

http://hometown.aol.com/pbcers/pbcers.htm

Nina wrote:

>

> From: Nina <ncampbell@...>

>

> Hello everyone! I just subscribed this evening. I have primary biliary

> cirrhosis. I was just diagnosed a month ago and had a liver biopsy 10

> days ago. I am awaiting the lab results right now.

>

> Anything you can do to educate me concerning PBC or living with a liver

> disease will be greatly appreciated.

>

> Nina

> Texas

>

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

[Guest guest]

Sue

I'm in Adelaide SA. Great place to live.

M Gray

Re: [ ] New to List

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

>

>

>

> ----------

> > Mark,

> Where in Australia are you, I am in Northern New South Wales.

> SueB.

>

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

[Guest guest]

----------

> Mark,

We went on our honeymoon to Adelaide, we were going to send home and get

all our things sent down there and stay there we loved it. We stayed at a

place called ys Motel. It was really great, we loved Adelaide.

SueB.

[Guest guest]

Hi Pati, My name is Jody and I have been away for a week or two with

server problems..welcome tothe list. I have Sjogrens disease as well as

a undiagnosed liver involvement. I did a search on the net and found a

way to send away for information on Sjogrens. It was informative but

you will find that there isnt a whole lot of information in relation to

a lot of the autoimmune diseases.. One of many frustrations. Anyway, I

can list my symptoms to you.

Joint pain, fatigue, dry mouth and eyes, memory loss, and now liver

involvment of some kind. what I have learned is that because Sjogrens

is a connective tissue disease, it can affect the liver by causing

chronic inflammation of the tissues within the liver and bile ducts.

All of this is theory from what I can see. I have had autoimmune

disease, in a couple different forms, for about 10 yrs now.

Do a search on " Autoimmune disease " or " Autoimmune liver disease " I was

given a site which listed many different AI disease along with links.

Good Luck and if there's any questions you have I will do my best to

answer them for you.

Take care

Jody

--- patrites@... wrote:

> From: patrites@...

>

> Hi Everyone,

> My name is Pati. I am 43 years old and I live in

> Michigan. I was diagnosed with AIH 4 years ago

> after suddenly going into fulmenent liver failure.

> I have been treated with Prednisoe and Immuran the

> whole time but unfortuntaley I am not " responding to

> treatment " . I only seem to have 3-4 months of

> normal alt, ast, and bili before they start rising

> again. The docs believe the AIH is from Sjogren's

> which I have had symptoms of for about 25 years, but

> it wasn't diagnosed until my liver failed. I am

> going back to the doctor next week for further

> work-up and to schedule another liver biopsy (I hate

> that). I have tried to do research on both of these

> disorders, but there just doesn't seem to be much

> information to find. I was very glad to find this

> listserve. I have read some of the archives and it

> is reassuring to know I am not crazy or a

> hypochondriac. Any information you can direct me to

> about Sjogren's and systemic involvement sure would

> help. I am looking forward to hearing/reading from

> all of you.

>

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

[Guest guest]

Welcome Pati. Lynn aih

patrites@... wrote:

> From: patrites@...

>

> Hi Everyone,

> My name is Pati. I am 43 years old and I live in Michigan. I was diagnosed

with AIH 4 years ago after suddenly going into fulmenent liver failure. I have

been treated with Prednisoe and Immuran the whole time but unfortuntaley I am

not " responding to treatment " . I only seem to have 3-4 months of normal alt,

ast, and bili before they start rising again. The docs believe the AIH is from

Sjogren's which I have had symptoms of for about 25 years, but it wasn't

diagnosed until my liver failed. I am going back to the doctor next week for

further work-up and to schedule another liver biopsy (I hate that). I have

tried to do research on both of these disorders, but there just doesn't seem to

be much information to find. I was very glad to find this listserve. I have

read some of the archives and it is reassuring to know I am not crazy or a

hypochondriac. Any information you can direct me to about Sjogren's and

systemic involvement sure would help. I am looking forward to hearing/reading

from all of you.

>

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

[Guest guest]

Hi Peggy,

Welcome to the list, sure wish we could have met you some other pleasant

way. I am so sorry your family is suffering from this disease, and for so

long too. We have many on this list from California, it seems when I first

was dx'd three years ago, there were very few people from CA....this only

goes to prove how wide-spread this disease is. I am so sorry it took so

long for you to begin treatment. Please keep us posted on how you are

doing.

Hugs,

Marta NJ

>From: " Peggy Leonard " <flwrpeg@...>

>

>

>I just recently joined this list, and want to thank everyone for providing

>such a wealth of information about Lyme Disease. I was bitten by a tick in

>1990, and after going to 8 doctors over a seven year period, was finally dx

>in 1997. My son and husband have also been battling this disease for

years,

>and have been diagnosed more recently. All of us are now on antibiotics,

>and suffer many of the weird systems I hear all of you talking about. It

is

>comforting to know that there are other people going through all the same

>battles we have been struggling with for years now. Thanks for all the

>support you provide.

>

>Warmest regards,

>Peggy in Northern Calif.

[Guest guest]

Hi

One of the draw back of not taking NSAIDs once you started is stopping

them abruptly. I have tried many NSAIDs, but still only find ONE brand

works for me. Due to that I now only take them when I am in real need.

Apart from that I keep taking my evening primrose oil, which seems to

work for me.

As for weight? I think we are all advised to keep out weight under

control. Last severe flare I survived, I lost three stone in three

months, size 12 to size 8! Thankfully I am now back to my normal weight

and no longer worry over weight. However I do panic if the weight falls,

as this is usually a sign that the disease is getting active, out of

control.

Obviously the lighter you are the less strain you place on hips, knees,

ankles and feet, so that is the medical aspect.

Love and God Bless

Gillian

[Guest guest]

Hi all,

I could use suggestions from anyone that cares to make one. I'll make this

as brief as possible but it's kinda hard. This is over a 4 yr span. I was

dx with Hyper thyroid. I took PTU for 8 months until I had a severe

reaction. Got off the PTU and had RAI to kill the gland. Through all of

this I began itching. I mean, not sleeping and itching 24/7. Then I began

having many infections. Bladder, kidney etc. I couldn't go to sleep

sometimes for up to 4 days. Went to 7 doctors. Finally the 7th tested me

for Hep C. It was positive. The PTU is real bad for the liver and of course

that's why I was so sick. Drug induced Hepatitis on top of a viral hepatitis.

It has taken me 4 years to feel ok again but without the help of doctors.

My own research actually. Anyway, I have some things left over I can't cure.

This is where I need you help. I have had a chronic yeast infection for 3

years. But my other symptoms are rashes and inflammed skin on my feet.

While I was really down, I got nail fungus on every toe. I also seem to be

allergic to the planet! But sometimes I have a good day. My hands and feet

itch terribly. Especially the bottoms of my feet. I have never ever had a

food allergy and now when I eat I itch afterwards. Chocolate is a problem

now. Milk is fine. But my hands wil itch sometimes from plastic or rubber.

Like the steering wheel. Been to the expensive Mayo trained derm and he just

gave me cream for the secondary infections. In fact it almost looks like 3-4

different rashes going on. I have been on Diflucan. Tried that for 3 days 2

seperate times. Clears up for awhile. The yeast comes back. Does this sound

like Candida? All of this started with the immune system crashing and I've

taken many supplements to get my liver enzymes back to normal and my energy

level is fine. I'm getting some Loprox cream for the nails today. I've

tried everything on them, tea tree oil, Oregano oil, Pau d ARco tea and

saoking in it and nothing works. So I'm really hoping this cream will. I

live in Florida. Rather hot to always wear shoes. But no way am I letting

my ugly feet hang out. Oh, one other symptom. My ears itch inside. Any

advice? Is there a test to confirm Candida? I haven't been on any anti

biotics. I did take some for a very short period to clear up the infections

way back when. But that's it. Thanks alot for any help!

Maggi