Chronic Lyme Disease

[Guest guest]

Sure, the test is called the LUAT and the lab in CA is probably IGenex. Who is

the doctor who diagnosed you? Sounds like he's really on his toes! Also, where

do you live? You mention a referral to a doctor in Dallas. Does that mean that

you live in Texas? in Mississippi

[Guest guest]

,

Thanks for the name of the urine test.

How long has this LAUT test been around?

Is it accurate?

Why isn't it used more?

Do you know anything more about it?

Have you had it?

Yes, I live in a little hick suburb between Ft. Worth and Dallas.

Thanks for responding so quickly.

Jan in Texas

[Guest guest]

At 12:10 AM 3/26/99 EST, Justjantoo@... wrote:

>From: Justjantoo@...

>

>Hi, I'm new here.

>Am I dealing with a Quack?

>Has anyone ever had this test?

>What were your experiences?

>What can I expect for treatment?

>Will treatment at this late date heal my many maladies?

>Prognosis?

You have a doctor who seems knowledgeable about Lyme.

You can expect a long treatment with antibiotics.

and if the abx are effective, you can anticipate some painful experiences

with herxheimer reactions. As the sprochetes die, they give off a toxin

which causes the reaction until you body can expel this.

As long as the abx is effective, you can expect this reaction every 4 weeks

or so, but it will gradually diminish, as the number of spirochetes is

reduced.

Stay tuned to this list for more info and support.

Yu may also wish to subscribe to the newsgroup:

sci.med.diseases.lyme

For the most authoritative article about lyme and its treatment, see:

http://www.geocities.com/HotSprings/Spa/6772/burrascano-12th.txt

It would be a good idea to print this and take it to your doctor.

God Bless,

Colby Van Atta

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[Guest guest]

yes it is the LUAT test and it is only done by IGENEX......as i have said

before any bllod or uring test are about 40% accurate ......it IS A CLINICAL

DIAGNOSES .....when will half of the docs get this thru their thick little

heads........there was a GREAT ARTICLE that someone put on the other day ( i

downlaoded it and will make copies for my supprt groups) on spirochettes it

only renforce what i have known for a long time due to

research......especially loved that in there it said what i have known

......from personal experiance .....that lyme titre levels have NO correlation

to How u feel.......the people who feel the worst and have the most active

spiros actuaaly usually have lowest titre levels. if you did not see this post

or did not downlaod it and would like to.......i saved it in txt format

........it is 8 pages of very good information about lyme and

spirochettes......contact me and i shall email it to u......

Reid

[Guest guest]

jan do u have karen forstners book " everything u need to know about lyme

disease? itf not get it ........it has a wealth of knowledge in it.......also

ignex labs is the ONLY lab that does the luat test......u can find out more

about the test on their web site.....www.igenex.com........check it

out.....any questions just ask.....

keep utr chin up/.....i am and have been down the same road as u......i am on

social security due to lyme .....i have been infected since 1988 but was not

dianosed till 1990.......there still is hope for us that are chronic.....just

take everyday as it comes and make the most out of it......its hard but i

ghave found it works.....what helps me is being up to cate on stuff so i can

try to be of help to fellow lymies like urself.....

Reid

[Guest guest]

Hi Justjanto

He had you do a lyme urine antigen test or LUAT for short. He sent it to

Igenex in California. They are an excellent lab. If I were you I would go

ahead and have the rest of the testing and get on antibiotics as soon as you

can. And start asking us questions, we can fill you in on most anything.

Hugs and welcome,

Connie

[Guest guest]

Hi Reid,

What article was that, maybe I could use it for my support group,

Thanks,

Connie

[Guest guest]

here connie and all that did not get it.....maybe it was not this forum i

don't know (lyme brained ole me) but this is a MUST READ FOR ALL LYME PATIENTS

DOWNLOAD IT COPY IT SEND TO UR LYME FRIENDS.... it is 8 pages but is wery

interesting it taught me some new things and reenforced alot of my previous

views......who ever asked me about my intercellular lyme ......there is some

excellant ifo in here to show ur doctor.....it is also well documenteed.....so

here it is....(sorry digest version.....

Reid

[Guest guest]

In a message dated 3/26/99 10:47:23 AM Central Standard Time,

RMcmur3194@... writes:

> karen forstners book " everything u need to know about lyme

> disease?

Reid,

No, I don't have that book or any book on the subject for that matter. I'll

try to get it in this afternoon. Thanks for the recommendation. Also, thanks

for the lab www site. I'll be checking that out next. This Lyme stuff is a

totally new direction for me in the last 2 weeks. I have arthritis in the

knees, hips, wrists and one shoulder. We have considered lupus, MS and

Fibromyalgia among other things over the past 27 years.

I was first dxd with MS in 72, the remitting/recurring type so I would have

times of illness and times of health over the years. By the late 80's I

believe it was ,I was very ill again and they had all these new diagnostic

tests which I was subjected to only to be told that I in fact did NOT have MS

because the tests said I didn't. That left me to wonder why I couldn't see for

almost a year, and why I couldn't walk or control my legs for a 7 month

period. Or why I had had such severe bladder problems for an extended period

of time? plus other recurring, debilitating health issues over the years. But

the tests don't lie do they? LOL

By 92 I was having new and more frequent problems. So I started back on my

quest for a compassionate, knowledgeable doctor. I haven't been able to find

an internist or family doctor (primary care) that I can work with. However,

my orthopedist (traded my reumatologist in for him) and my neurologist both

approach saint hood most of the time.

A couple weeks ago my neuro problems started to kick in big time, so hence a

trip to the doc. He has been treating me with some of the lesser meds. used

for MS. He did his usual neuro stuff and the suggested this urine test I had

never heard of before. My first reaction was, why bother? we already know the

test will come back neg. I did the test and the results came back positive - I

think they must have switched samples or something. My lab results never are

positive. A digression here--back in 1970 I was sent home from the hospital

because even though I had the other symptoms of appendicitis my white blood

count did not show that I had an infection and I only had a low grade fever.

Three hours later my appendix ruptured at home, I spent 9 days in ICU not

knowing if I was going to survive.

That was my first indication that standard lab test mean nothing to my body.

I see this other specialist on Tues. about my recent LAUT test. We'll just

have to wait and see what he has to say.

Maybe all this Lyme info I'm gathering will be for nothing.

I really don't know how I feel about it all. I'm sort of in shock and not

quite sure if I really want a " Lab qualified " dx, I have lived so long with

not knowing why my body isn't working like it should, what's it going to be

like having a " real " dx? That is if they give me one on Tues.

Enough of my rambling. Thanks for your support and encouragement. And here is

to better health for all of us.

Janice

[Guest guest]

Dear Janice,

Janice, I was very moved by your story....I thought as I was reading it,

what else could happen to this woman! I too was dx with CFS, to only

find out that it's been lyme, and I've had it for over 10 years. But,

you've been thru all the dx's, and I can't even imagine what it has been

like for you. I hope that you now have peace of mind knowing that they

finally dx you correctly, and you can get the right treatment K eep us

informed on your progress. I do have one question: What tests were

performed in

the 80 " s that proved you did not have MS? I hope all goes well on

Tuesday, when you see your dr. Good luck,

KAREN

[Guest guest]

I think you are talking about the LUAT ......Lyme Urine Antigen Test. I've

had that test too.........and had a result of #251........I've had lyme for

about 3 1/2 years......I have also been dx with FMS....caused by the Lyme.

I am currently undergoing weekly Bicillin antibiotic IM injections. After

five weeks, I feel quite good. I hope it continues. My biggest problem is

sleep at the moment.......probably more FMS than anything. I think I'm

stuck with that condition for life. Hope this helps.......Connie

[Guest guest]

Hi Janice,

yes, your story is so mind and heart wrenching. I just wish we could educate

them ***** md " s on lyme. I hope you do better, keep us posted and good luck.

Do you need information on a herxheimer reaction?

Hugs,

Connie

[Guest guest]

Hi Connie,

I wrestled with the sleep issue for a few years. I finally was at a lecture

and this pain and FMS specialist told me about Ambien, it was new then. I was

on elavil, didn't know it had adreneline in it and it woke me up every night

about 2 am. The Ambien doesn't give me any morning drowsiness or hangover

feeling. I also used alternative stuff like Cammomile, kava kava, passion

flower, valerian, anything I thought would work. When you get you sleep

pattern back to somewhat normal ( as it can get with lyme) it really makes a

difference. My insomnia nights are not near as often. What a blessing.

Stay well,

Connie S from Michigan

[Guest guest]

In a message dated 3/28/99 7:01:25 PM Central Standard Time, Cslyme@...

writes:

> Do you need information on a herxheimer reaction?

> Hugs,

Thanks Connie,

Yes, herxheimer reaction is new to my vocabulary. Please explain. This Lyme

thing is so new to me that that I don't even have much of a clue as to what to

ask or what to expect. I did buy the book yesterday that Reid recommended and

down loaded the long article that both he and someone else had put on line

yesterday. I must have this lyme brain that many of you lymies have mentioned.

I have tried to read this stuff and it just doesn't register-- I read and

either just plain don't understand or forget what I have read before I even

turn the page.

My fear is of the IV injections. Some of my reading leads me to believe that

the best way to " get the cure " is to be hooked up to an IV drip round the

clock for 18months or more. First off, how is that possible? Second can some

of you tell me of your experiences with the antibiotics and even suggest some

intelligent questions for me to ask my doc? I feel rather lost at this point.

Thanks for the hugs, I really need them right now.

Hugs back to you,

Janice

[Guest guest]

Hi Janice, I just wanted to give you a little info about IV medication. I have

had lyme for 6 years and have been on every antibiotic one could think of,

except for the flagyl everyone has been talking about. I am now on bicillin

shots and biaxin and plaquinel. I feel somewhat better but still have bad

days. When I was on IV years ago I improved much more and was in remission for

over a year. However it did still come back again. I don't know if I should

try IV again now. this stuff I am currently on is just not really doing to

great and IV had once given me my whole life back(for a while at least) anyway

I don't think I was on it long enough either. Only 6 weeks, but to stay better

I would stay on it for as long as it took. It is not that big of a deal and

you get used to it rather quickly. Someone comes to the house and inserts a

small cathether like line into your arm and they check it every week and

change the dressing on the outside. you feel it at first but after a few days

you forget it is even there. Everyday you hook up your medicine to the line

and let in infuse for an hour. these lines can stay in for 3-5 weeks unless

they are causing irritation. Some doctors reccomend changing it every three

weeks to be safe. It really is not that bad and to feel better it is so well

worth it. I hope you get on the right medicine(whatever that may be for you)

very soon feel better -Val

[Guest guest]

In a message dated 3/28/99 7:25:29 AM Central Standard Time, RVKLA@...

writes:

> What tests were

> performed in

> the 80 " s that proved you did not have MS?

It was late '80s and/or early 90's and over a period of time

CAT scan

MRI

lumbar puncture [spinal tap)

all that comes to mind right now

the CAT scan and MRI have both been repeated in the last 4 or 5 years. MRI

showed small plaques not typical of MS but of unknown origin--no one seemed to

worry about it and just said no MS

My neuro has been after me to have another lumbar puncture but I'm just not up

to that kind of pain again--it seemed liked it made everything worse and no

real conclusion.

Back in '72 when I was first given the dx MS, it was a disease of exclusion-if

they couldn't explain away your neuro symptoms with lab work, you had MS.

Over the years I have been treated with a lot of steroids every time I would

have an exacerbation. Then these past 4 0r 5 years my current neuro doc has

had me on some of the MS meds (none of the big time injectables) to treat

symptoms even though the lab work said no MS. It will be interesting to see if

he keeps me on them now. They have helped and a lot of the MS symptoms are

the same as the Lyme symptoms so maybe he'll just add the antibiotics. I will

let you all know what happens on Tues.

Janice

[Guest guest]

In a message dated 3/28/99 10:15:57 AM Central Standard Time,

conniek@... writes:

> am currently undergoing weekly Bicillin antibiotic IM injections. After

> five weeks, I feel quite good.

Connie, thanks for the info.

I hope you continue to get good results.

Has your doc suggested sleeping meds?

I uses ambien (not yet tonight since I'm still here at the computer) It puts

me to sleep in about a half hour and allows me 4-6 good hours of sleep (if my

pain is at an expectable level-whatever that means) without feeling groggy or

drugged in the morning. You might ask your doc about it. Good luck. Janice

[Guest guest]

jan,

keep trying both peices of literature are worth reading ....it will sink

in.......herxs are explained in the book also......tkae it sloww 1 or 2 pages

at a time or less if need be.......as for IV....18 months is unuasally long

......most insurance co.s will only ok 4 weeks which is not long enuff.....i

was lucky and was approved for 12 weeks .....however it did not help

me....everyone is differant.....u are not hooked up 24 hours a

day......usaually u are given what is called a PICC line.....it is in your

arm....it is a quick connect......my solution came in that is called a iv

pump.....it was a small plastic round bottle that looked and was the size of a

baseball......i hooked on e up once a day.....it took about an hour to infuse

myself.....during that time i wold A; watch tv.....or B; actually do anything

i wanted as it came with its own little fanny pac.....i use to take it while

watching my daughters soccer games driving or anything else it was very

easy....how that helped keep at it .....and keep those ??? coming this list

and the people on it our full of good information......Reid

[Guest guest]

In a message dated 3/29/99 9:09:14 AM Central Standard Time,

RMcmur3194@... writes:

> the people on it (the list) are full of good information......Reid

>

Thanks Reid.

Yes, they are full of good information, but even better than that I have found

an abundance of encouragement, caring and compassion from the wonderful people

on this list. THANK-YOU EVERYONE.....Janice

[Guest guest]

Hi Janice,

I have a good paper that explains herxheimers, they also should be in the

books you got. I will snail mail it and anyting else you need. Yes, the

brain becomes a problem. I just learn to deal with it. Antibiotics helped a

lot. I am going on 6 years. I would be a vegtable without them. I feel even

with all the other alterntive things available and I do make use of them, I

would not get well without antibiotics,

Keep trying, you will win,

love ya and hugs,

Connie

[Guest guest]

Good Luck Janice,

Educate that doctor,

Connie

[Guest guest]

Janice, thanks for answering my question.

I was wondering how you made out Tuesday?

KAREN

[Guest guest]

-

I'm glad I answered your question.

What was it? And what did I say?

NO memory here

I wrote my Tuesday experiences to the group earlier this evening. Hope you

get it.

Thanks for wondering. It is good that someone can remember some things--like

my name ha.ha,ha

Janice

ps-I tried to send this to you privately but my computer tells me your e addy

is invalid.

[Guest guest]

Has anyone out there ever been told that their CMT

symptoms may be due to Lyme Disease? I was tested

for Chronic Lyme 6 years ago (blood test) which was

negative. However my internist has " alternative "

ways of testing for it, namely a Bi-Digital O-Ring

Test, and he recently told me I have the disease.

He believes that this is the cause of my peripheral

neuropathy, which has been labeled as hereditary

and/or CMT, and that mega doses of antibiotic will

make me better, or at least greatly improve my

condition. I am intrigued by this idea, but more

skeptical than anything else. Any experiences,

knowledge, or opinions on this subject would be

appreciated. Thank you!

[Guest guest]

Hi , Alan here:

Most likely the common answer you would get to this question would be

no, but I recently found an interesting web site crediting many of

the symptoms we experience to neurotoxins in our environment and also

neurotoxins contracted from ticks. Take a look at

www.neurotoxins.com and notice that they are doing research work on

CMT. I have no idea if their theories have any validity or not, but

who knows?

> Has anyone out there ever been told that their CMT

> symptoms may be due to Lyme Disease? I was tested

> for Chronic Lyme 6 years ago (blood test) which was

> negative. However my internist has " alternative "

> ways of testing for it, namely a Bi-Digital O-Ring

> Test, and he recently told me I have the disease.

> He believes that this is the cause of my peripheral

> neuropathy, which has been labeled as hereditary

> and/or CMT, and that mega doses of antibiotic will

> make me better, or at least greatly improve my

> condition. I am intrigued by this idea, but more

> skeptical than anything else. Any experiences,

> knowledge, or opinions on this subject would be

> appreciated. Thank you!

>

>

>