Thanks.  My info is as follows:

I became very ill with what I could only describe as a horrific flu-type virus, back in May of 1988.  I couldn't sleep, couldn't eat/swallow (not even melted Hershey's kisses!), felt as though I was going crazy and felt as though the doctors thought the same.  While speaking with one of the doctor's I remember my left hand was clenching and cramping up in all sorts of distorted ways.  The doctor must have thought I was doing this intentionally as it didn't seem to alarm him one bit.  That was also the time when I lost control of my bladder for a while--had to wear a pad as it would just trickle out whenever--but at that time there was no sign of bladder infection.

Pain was throughout my body.  One doctor advised me to begin walking for exercise.  But, after only a couple hundred feet, my legs would cramp up and prevent me from taking any further steps.

Doctors ran just about every test they could think of.  Even tests on my heart as it would start beating very rapidly and forcefully for no apparent reason.  Then, around the middle/late of that year, we started to hear about "Lyme Disease" in the news.  It was mainly said to be on the east coast (I'm in California).  My doctors refused to test me for Lyme--despite my remembering a large oval swollen area on the back of my forearm several weeks after this mysterious illness struck (I had ignored it as I thought it was just an over reaction to some sort of spider bite as I remember gardening among tall bushy type plants shortly before I became ill.)

Anyway, I was negative for hepatitis, Epstein Barr, mono, etc.  so, the doctors all agreed I was suffering from depression.  Yes, I was depressed, my life had been taken from me and no one seemed interested in finding out what was the cause!  Anyway, my physical symptoms worsened to the point where my kidneys nearly shut down.  If it weren't for the HMO I was in, I would have been hospitalized.  My urine was dark orange--even then, the doctor insisted I must have been on my period and just "didn't know it" (Mind you, I was 29-years old and had had three children.)  so they catheterized me to get a urine sample.  And, of course, they were baffled that the urine was still dark orange.  They blamed the nurse that did the catheterization that she must not have kept the sample from contamination.

So, I went through my trials of antidepressants and ibuprophen.  Occasionally, a two week antibiotic for the latest UTI infection.  But, it seemed that once I was off the antibiotic for a few weeks, the UTI returned.  Finally, I had a procedure done that widened the urethra which seemed to help the UTI symptoms.

Anyway, the apathy that I met with infuriated me.  I felt sorry for all the other patients that must be going through the same type of apathy I was receiving.  Eventually, I was well enough to attend school and become a medical assistant part-time.  At least helping others kept my mind off of how miserable I felt.  But, every couple of years, despite loving the job I had, I would become so ill that I had to quit my job.

That's where I am now, again.  This time, my employer said, "The answer is not for you to quit, but for us to get you better."  And he started me on B-12 injections about two weeks ago.  They don't seem to be making much of a difference, but I take them anyway.  Then, I remembered my employer, upon hearing my med history, asking me if I had ever been tested for Lyme Disease.  I went back through my records two weeks ago, and, sure enough, no records of have a Lyme Disease test.    So, I went to the lab and got tested.  It came back with Lyme Antibodies--but only half the amount the lab considers a "positive" result.  My employer feels that I had to have been exposed to Lyme at some point to have those antibody titers and we are now suspecting that my illness way back in the late 80s was indeed Lyme Disease.

The question now is:  Is it too late to try antibiotic treatment?  I've read that latent Lyme sometimes responds to IV antibiotics, but from what I can tell, "latent" Lyme is pretty much a several month post exposure situation--not necessarily a 14 year post exposure.  Thus, my question.  Would IV antibiotics do me any good at this point?  Who should I see for their administration?  A Rheumatologist?

My symptoms have progressed over the years to the point that I now am showing neurological manifestations--imbalance disorders, neurally mediated hypotension (d'xd by a Tilt Table Test), pain that responds to Neurontin --no relief from the typical pain relievers.  Migraines that require Demerol for relief.  Excruciating behind-the-eye pain along with those.  My thyroid gland is kaput, my thyroid antibodies are over 3000 (with 100 being a positive), and the fatigue keeps me from getting out of bed several days of the week.

That's my story in a nutshell.  (Wish we had the Internet back in the 80s!)  Any ideas?

Thanks,

C.

update
.S.  Since I sent you my story, BTW, I have been confirmed to have Lyme Disease from that insect bite way back in 1988.  The Lyme physician said my history "read like a classic case" of Lyme Disease.

My neuro symptoms these last few years are probably evidence of its involvement in my CNS.  It has had many years to propogate and invade.  I finally got started on antibiotics for Lyme (for the first time) last October.  Every four weeks I have a herx, and in December I actually formed two unquestionable bullseye rashes that my Lyme doctor confirmed was from my Lyme infection.
 
 

I'm just curious if you're still looking for stories from people with lyme.  I was intrigued by your story because you also got lyme at a young age (or so I gathered from reading).  I am a 20 year old college student starting my fourth (or fifth now?) try at treatment for lyme.
I was bitten last summer while backpacking in Arkansas, but since I go to college in southern califronia, I had to face west coast doctors during the diagnosis stage.
I won't send you the whole story since I'm not sure if you're still looking for that.
I've found on a whole that it's very difficult to find support as a young person with lyme, so I'm just looking for some people to relate.
I'm also willing to contribute my skills as a web designer if you're ever interested.
Let me know,
crwillia@ScrippsCollege.edu

7-00

Thank you for your hard work in compiling this information on Lyme Disease in California.  I live right on the border between Monterey County and San Luis Obispo County in a very rural area...lots of deer, racoons, mice, fox, etc.  I also work part-time at a Veterinary Clinic in a nearby coastal town.  In October or November of '99 I felt what seemed to be a large, painful bruise on my left side, above my waist. I didn't even look at it because I had fallen on left side the previous day trying to 'tackle' a runaway dog in the treatment room.  I just assumed I had bruised my side.  Some 36 hours or more passed and while taking a shower I decided to take a look to see what sort of bruise I had.  Much to my surprise and horror,  I saw an embedded tick (not engorged, very small adult) surrounded by a dime-sized red area.  I pulled out the tick...very small, wiggling around and let it wash down the drain. Over the course of the next two weeks, the dime-sized red spot started expanding with a bruised-looking purplish center and red in the expanding area. It grew to about five to six inches in diameter.  I showed it to a veterinarian at work and also one of  my co-workers.  I did call my Doctor to report it....one of the staff relayed what I described to the Doctor (who knows if she relayed it with the details I gave her) and she came back on the phone and said the Doctor said the put ice on it and take Benadryl; that it was probably and localized tick-bite reaction. Although I KNEW it was more than that I did not push the issue because of the type of relationship (or lack thereof) I had with this doctor....I only saw him once very 18 months or so.  I have been treated for depression for 10 years or so and he wasn't very cooperative about working another doctor about getting anti-depressants etc. I got the feeling (and I could be wrong) that he thought I was probably some over-reactive, pseudo-depressed, hypochondriac woman.
After the rash went away, I really didn't notice any symptoms.  In another coincidence, I was working with my other doctor to slowly decrease the amount of the anti-depressant (Zoloft) to see if my serotonin levels would stabilize on their own.  So, in February in March, as I became fatigued and somewhat depressed, I attributed it to the reduction in medication (and those symptoms could very well have been a result of that reduction). BUT........in May 2000 i noticed increasing pain and swelling in my ankles and my hip joints (or maybe the muscles in the upper thigh area) started hurting.  It got worse and worse, especially in the mornings.  I could barely shuffle around and was walking like an eighty year old lady.  I would feel better as the day wore on. Then I started getting pain in my right wrist. It would go away; then pain in an elbow.  The pain in the hips went away and then I got the ankle pain again.  In early June it suddenly occurred to me that this might be related to the tick-bite back in Oct/Nov '99.  I called the doctor's office to report joint pain and described it in detail the the staff.  They called back the next day and said the doctors wanted me to have a blood test and to make an appointment to see him.  I had my blood drawn on Wednesday June 14, 2000. My appt is Friday June 23.  I have not heard back about the results.  I have NO DOUBT that I have LD.....even if the test(s) come back negative (they did a lyme serology), I will get a copy of the lab reports and get a second opinion and a second lab test at a different lab.  I hope the doctor will be truthful and up-front with me...especially since he was WRONG to not see me back when I reported the rash.  I have put in with my HMO for a change in physicans which will be effective July 1st.
All the research I have done on LD symtoms points to my having it.  I just want a correct diagnosis so I can deal with it, do what I can and get on with my life as best I can.
Thanks for listening.....I will come back to visit your site often and will do my best to get the word out about Lyme Disease in California.

dcor@thegrid.net

I was wondering whether you could point me to a Lyme disease doctor in the Los Angeles area. I live in West Los Angeles, and was diagnosed with possible Lyme disease 3 months ago (a B. Burgdorferi antibody test revealed an IGG count of >1024). I was on IV antibiotics for 4 weeks (ceftriaxone), and towards the end it seemed to get a bit better, but now I feel worse again (extreme fatigue, pelvic pain, lower back pain, constipation, head-aches, eye irritation, color change around my eyes). My doctor said that 4 weeks of antibiotics is plenty.

I was always pretty healthy and strong until last August. Since then I felt bad. I remember I had a couple of ticks when I grew up and lived in southern Germany, the most recent one was about 20 years ago. About 3 years ago I got sick for about 3 weeks, with high fever for one week, and 2 weeks of extreme headaches. Nobody ever found an explanation for that, and after 3 weeks everything returned to normal.

If you know any doctor with experience in treating Lyme disease in or around LA, please let me know. I would also welcome any other suggestions.
 

thanks,
Armin.

armin@mediaone.net

Thank you for your hard work in compiling this information on Lyme Disease
in California.  I live right on the border between Monterey County and San
Luis Obispo County in a very rural area...lots of deer, racoons, mice, fox,
etc.  I also work part-time at a Veterinary Clinic in a nearby coastal town.
In October or November of '99 I felt what seemed to be a large, painful
bruise on my left side, above my waist. I didn't even look at it because I
had fallen on  my left side the previous day trying to 'tackle' a runaway
dog in the treatment room.  I just assumed I had bruised my side.  Some 36
hours or more passed and while taking a shower I decided to take a look to
see what sort of bruise I had.  Much to my surprise and horror,  I saw an
embedded tick (not engorged, very small adult) surrounded by a dime-sized
red area.  I pulled out the tick.. it was.very small, wiggling around. I
washed it  down the drain. Over the course of the next two weeks, the
dime-sized red spot started expanding with a bruised-looking purplish center
and red in the expanding area. It grew to about five to six inches in
diameter.  I showed it to a veterinarian at work and also one of  my
co-workers.  I did call my Doctor to report it....one of the staff relayed
what I described to the Doctor (who knows if she relayed it with the details
I gave her) and she came back on the phone and said the Doctor said to put
ice on it and take Benadryl; that it was probably and localized tick-bite
reaction. Although I KNEW it was more than that I did not push the issue
because of the type of relationship (or lack thereof) I had with this
doctor....I only saw him once very 18 months or so.
After the rash went away, I really didn't notice any symptoms.  In another
coincidence, I was working with my other doctor to slowly decrease the
amount of the anti-depressant (Zoloft) to see if my serotonin levels would
stabilize on their own.  So, in February in March, as I became fatigued and
somewhat depressed, I attributed it to the reduction in medication (and
those symptoms could very well have been a result of that reduction).
BUT........in May 2000 i noticed increasing pain and swelling in my ankles
and my hip joints (or maybe the muscles in the upper thigh area) started
hurting.  It got worse and worse, especially in the mornings.  I could
barely shuffle around and was walking like an eighty year old lady.  I would
feel better as the day wore on. Then I started getting pain in my right
wrist. It would go away; then pain in an elbow.  The pain in the hips went
away and then I got the ankle pain again.  In early June it suddenly
occurred to me that this might be related to the tick-bite back in Oct/Nov
'99.  I called the doctor's office to report joint pain and described it in
detail the the staff.  They called back the next day and said the doctor
wanted me to have a blood test and to make an appointment to see him.  I had
my blood drawn on Wednesday June 14, 2000.
Thanks for listening.....I will come back to visit your site often and will
do my best to get the word out about Lyme Disease in California.

UPDATE: June 30, 2000.   The first ELISA came back 'equivocal' (1.25?). A
repeat ELISA was done, along with a Western Blot, Iron, Tibc and Ferritin,
HLA-B27 and TSH.  The doctor's assistant phoned me yesterday to let me know
that "the lab results show you test very, very positive for Lyme Disease."
An Rx was phoned in for Doxy.....(?) which I will pick up today.   I am also
going to get a copy of the lab reports so that I can understand them in more
detail.

dcor@thegrid.net

Yes- I did have the appointment and discuss it with the dr. She had
handouts with question and answers and numbers showing how "rare" it is
in our area. So without testing EVERY tick that is walking around me and
my horse after a ride .... Also I guess the vaccine is a three part
deal. I know after it gets hot- we don't have a problem here.  I also
know when I trailer to the coast, to ride its still cool and very tick
ridden. So I continue to wear long sleeves and usually a white
turtleneck, and spray the heck out of my horse, and hope for the best...

denisekt@pacbell.net

I contracted Lyme Disease and was successfully treated about 4 1/2 years ago.
 The 2 bulls-eye rashes compounded by fever and other flu-like symptoms were
initially misdiagnosed as a "brown recluse spider" bite, and treated
accordingly.  I sufferred for months with unexplained rashes, fatigue, and
other vague symptoms causing much stress to my recent marriage.  Finally, a
friend of mine, who is a Nurse Practitioner, strongly encouraged me to go
back to the doctor and show him the "strange" subcutaneous rash on my belly
that I was going to write off, thinking that it would be another futile
visit.  Only then, did the doctor suspect Lyme Disease.  When I tested
positive, I was put on a 30-day regimen of Doxicycline.  We suspect that the
kitty that we brought home shortly after our wedding was to blame.

As far as I know, I've sufferred no residual effects of the disease.  My
husband and I sufferred for years with infertility and 3 miscarriages (after
4 uncomplicated pregnancies during my first marriage) and I always wondered
if my exposure to Lyme Disease was even partially to blame.  We are now,
Thank G-d, expecting our first child next month, and pray that all will go
well with this child.

My husband and I now volunteer with an organization that rescues American
Eskimo Dogs, and we always have the dogs bathed prior to bringing them into
our home.  But I still panic whenever we find a tick, even if it is presumed
to be dead following the bath.

Thank you.

I am 57 years old, have been a high school teacher and a PT community
college and university anthropology teacher. For the last 5 years, I've
been a reporter (too old when I got my PhD to get a permanent teaching
job, also the wrong sex). Last April I was fired, after 6 weeks, from my
first public relations job, indirectly because of Lyme, I'm sure.
Now that I've researched it, I believe I have had Lyme since 1981, for
sure, and possibly since 1971. I have been bitten by dozens of ticks
since 1971, w/two, had circular rashes.ONe of those, in 1981, was a huge
rash accompanied by all over body pain, thoughts of suicide, great
mental confusion--I may or may not have been feverish, but it felt like
I was delirious, certainly not rational.  I have twice tested negative
on the test my doctor described as a Lyme titer, I assume it was an
ELISA. I have been developing Lyme-consistent symptoms, principally
arthritic and respiratory, since 1971, all diagnosed separately. None
made me unable to work for more than a week at a time, but did limit me
greatly for periods of months. But I also had periods of great good
health, helped raised four children, was in two bellydance troupes,
finished my Phd while supporting two children singlehandedly, published
a book, lived through 2 divorces (Lyme figured in those), and more.
The BIG tick bite was right over the gland in my groin. I removed it
improperly, injecting myself with it. Our local doctor insisted I
couldn't have LD because the rash was "too big, too soon, not round
enough and too uniform in color." But he gave me tetracyline for 10 days
anyway (big deal, as it turns out). I tested negative weeks later.
 Last October, after months of building symptoms (fatigue, depression,
back pain and spasms, clumsiness), I woke up one morning and couldn't
walk. Was in bed for a week taking PErcadan and Celebrex. Got a lot more
symptoms right then and have never gotten rid of them, while developing
more. I got on the INternet, did a lot of research, decided I had
LD, not only from that big tick bite but from the summer I spent camped
on top of tick habitat (leaf mulch) in 1972, picking nymphs off me all
summer. And another one in 1982, small rash, neg test, 20 days erethro.
With my self-diagnosis, I went to a local physician's assistant that a
friend of mine, another Lymie, had educated on LD. The PA is herself a
Lymie. I had no problem getting her to prescribe for me, first
doxicycline (30 days), then Biaxin (8 weeks,just finished it).
But I realize she does not really know what she's doing with regard to a
28 year old case and those clearly did not knock it out.
I quit my part-time job two weeks ago, can't work anymore, am applying
for county relief (Humboldt County) to support me while I apply for
state disability, then SSD. When I'm on MediCal, I can go to a Lyme
specialist out of the county (since there's no one in the county except
the doctor who misdiagnosed me in 1981 and has been treating me like a
hysterical woman and malingering shiftless bum hypochondriac ever
since.) I have the names of two such doctors. I am abandoning all my
goals--I was probably too old to teach or publish more books, anyway.
I'm moving to be near family in Eureka, whether they want me or not.
 I'm convinced there is a bunch of chronic Lymies here in southern
Humboldt who were misdiagnosed like me. I personally know about a dozen,
some who have been hospitalized. Many more people have it, I'm sure, but
are not really aware how dangerous it is. I'm working on an info packet
I plan to hand around at my own expense. Maybe I'll work on starting a
support group in Humboldt, once I'm sure where I'm going to live and if
I have enough energy. My number one goal along those lines right now is
a letter to the clinic that misdiagnosed everyone (I forgive them, it
was before much was known) and tell them to stop distributing the
leaflet from the American College of Physicians that says "The tests are
reliable" !!!
I'm going to work on compiling alternative treatments for symptoms--hot
tubs, ozone, hyberbaric chamber, yoga, acupuncture, nutritional
supplements, herbs, visualization, etc. I think it is my hot tub habit
that held off the real attack for 28 years and one of my Lymie friends
here, another scientist, who thinks he's had it about 30 years, too,
swears that it is his hot tub that is "keeping me alive." He stopped
taking antibiotics after getting very sick about a week after completing
an IV course. He already had a hot tub in which he can completely
immerse himself at temp of 108 for a half hour every day or as needed.
He's functioning fine, also takes nutritional supplements.
Given that I'm poor, have no insurance and MediCal is not going to cover
the most effective antibiotics and given that I've had it 28 years and
will be too old to work by the time they could cure me, if they can cure
me, which I doubt--things like IV antibiotics are probably not an option
for me.
I spent $500 of my own very limited money (sold something to get the
money) on an 8 week course of Biaxin. MediCal would not have covered it,
my druggist told me, for Lyme, even if I had been on MediCal. So, folks,
I better get myself access to a sauna or hot tub, keep taking the 20
dietary supplement pills a day I'm taking now, start meditating and
doing yoga and look into wheat grass (latest suggestion I've heard.)
Anybody with info on non-antibiotic treatments or who knows of anyone
that got greatly helped (I don't use the word "cured" in relation to LD)
by antibiotics after 25+ years, please email me at jentri@asis.com.

Worst symptom I am having is the gut reaction, serious depression which I
think goes along with the Jarisch Herxheimer stuff...and the chronic,
unremitting pain.  Soon I will have a CPAP machine for my sleep apnea and
hope the other symptoms will subside.

Write soon.

Best wishes,

ALopezTCR@aol.com

 The most frustrating part about this is what I've lost. I have always
been incredibly strong. I used to work out two hours a day doing
aerobics and weight lifting. I was even considering body building
competitions. I cross country skied. Hiked other people into the ground.
Rode horses. Ran. African danced. I would work all day, work out then
come home and paint, garden or work on my remodel. If I needed more
money I just took on more work or took a second job. I feel like an old
woman. I have even decided not to have children until I know I can be a
stable provider. I don't think it is  easy having a parent who is on the
couch all the time whether they are ther because of booze, drugs or
illness. But it is hard to let dreams die. I can say one thing. This
whole thing has taught me what true friends are and has allowed for
incredible spiritual growth. When you can't lift your head and you are
home alone there is no one else to turn to but Spirit. I am glad I was
proactive. I am glad I listed to my intuition. I was being sent to a
gastroenterologist when I finally just had to stop all testing and take
a break. Then my friend called and referred me to this doctor. I truly
think Spirit is who led me to share with the one person who helped me
find a solution. I truly beleive Spirit is who kept me from killing
myself. I think Spirit is who led me to a dog, starving in the snow, who
has been my devoted companion, empathetic warmth and the only reason at
times I did not just drive my car off a cliff to end all the suffering
of myself and my husband.

 The worst part is the denial in our local medical community. There are
doctors who still swear we have only had three cases of Lyme in the
county. I have reffered 6 people to my doctor. Half of them tested
positive. There were 15 people at the first Lyme support group and 25 at
the second. I have friend taking her 3 year old girl to my doctor. She
had a tick in her hair, was very sick afterword. Her first words after
Mommy and Daddy were "Legs hurt" She sleeps all the time and has dark
circles under her eyes. Her pediatrician is one of the doctors that
swear Lyme is not a problem here.

 I will sign off because I am sure I could go on forever listing
symptoms, the denial of the medical community and the poor testing
procedures I have been through. I cried the day I found out. I was so
releived to find out I was not crazy.  I would love to receive and offer support to others that are dealing with
this cunning, baffling disease.
 

My E-mail is olwen@jps.net

From: "Rosenow, Peggy" <peggy.rosenow@cpcmed.org>
To: "'LymeDisease@juno.com'" <LymeDisease@juno.com>

I live in Colorado (which is part of the reason it took so long to get
diagnosed). However I moved here from California last year.  After 13 weeks
of seeing internists and a neurologist I was just diagnosed. I have had 5
days of IV Rocepin and would like to talk to other people who have gone
through a similar experience. Thank you.

 From: Adam Kufeld <adamk@well.com>
To: lymedisease@juno.com

Friends, do you have any info on where we could get vaccinated either in
California's bay area or in Mendocino County. We have property in
Mnemonic and are very concerned.
Thank you in advance.

Adam Kufeld

From: Alan White <102761.2335@compuserve.com>
To: lymedisease <lymedisease@juno.com>
Date: Thu, 8 Apr 1999 13:30:07 -0400
 

My name is Sandy and I currently live in Turkey.  I will be returning to
San Bernardino,  CA soon and I need the name and address of a good doctor
for Lymes.

Thank you for your help.

Sandy

From: 12581 <lclaxton@worldminerals.com>
To: LymeDisease@juno.com
Date: Sat, 10 Apr 1999 15:01:10 +0000
Subject: Treating physician in my area
 

I have been having some of the symptoms of Lyme disease for the past
five months and before I go and get a blood test I would like a
reference of a physician in my area that has a good knowledge of the
disease.   I live in Lompoc, CA which is about 40 miles from Santa
Barbara.   My symptoms are stiff neck, headaches, and aching joints.
These are new to me, I am 59 years old and never had these problems
until approximately 5 months ago.    From what I read on the net, lyme
disease is difficult to diagnose

Thank you so much for your help in suggesting a lyme doctor in the bay area for me. I appreciate the time that you took to do that. I have used your information and am actively pursuing contact with a few different doctors. Ten years ago I was treated with acute 3rd stage lymes. It was an awful experience going from doctor to doctor and being told that I was sick with a "syndrome" or I was cured and the rest was "in my head". So I dropped the ball....Now I need to see a doctor again but I do NOT want to go through 20 different doctors to finally find one who understands the disease and what it does. You have helped me avoid that with your letter,

Thank you

Katyushka

bordi@sonic.net

If you live in Santa Clara or San Mateo counties please read the news
section of this web site.   Lab admits to reusing needles;   web site link.

4-19-99

From: 12581 <lclaxton@worldminerals.com>
To: LymeDisease@juno.com
Date: Sat, 10 Apr 1999 15:01:10 +0000
Subject: Treating physician in my area

I have been having some of the symptoms of Lyme disease for the past
five months and before I go and get a blood test I would like a
reference of a physician in my area that has a good knowledge of the
disease.   I live in Lompoc, CA which is about 40 miles from Santa
Barbara.   My symptoms are stiff neck, headaches, and aching joints.
These are new to me, I am 59 years old and never had these problems
until approximately 5 months ago.    From what I read on the net, lyme
disease is difficult to diagnose

From: "papabear@cts.com" <papabear@cts.com>
To: lymedisease@Juno.com
Date: Mon, 12 Apr 1999 17:39:02 -0700 (PDT)
Subject: Specialists in my area

Do you have the name of a specialist who will not laugh me out of his/her
office when I ask to be tested for Lyme disease?  I have seen a
maxillofacial specialist, an endocrinologist, a chiropractor and 2
rheumatologists so far.  Do you have to ask for the test on your knees,
perhaps?  Thus far I have been diagnosed as having spondylitic changes the
length of my spine, repeated parotid infections with attendant enlarged
lymph node, and "sicca with arthralgia", all of which seem to fall under the
symptoms I have seen listed for Lyme disease.  Unfortunately, though I have
lived in many high-risk Lyme areas, I now live in San Diego County,
California, and our medicos are not so familiar with Lyme.

Thanks!

From: Parodi Giacomo <Giacomo.Parodi@elsag.it>
To: LymeDisease@juno.com
Cc: "(G.Parodi casa)" <gparodi@ipbase.net>
Date: Tue, 20 Apr 1999 10:46:45 +0200
Subject: strange hypotesys about Lyme

Hi,

Because of what I am going to say I may appear like a mad...
I am an electronic engineer PHD, from Italy.
My daughter (10y) seems to have Lyme disease (acquired during
last summer vacation to Bay Area. She had the bite, the eritema migrans
and neurological problems (and demyelinization). She was almost diagnosed as
Multiple Sclerosis. The I discovered Lyme on the internet.
Now she seems to recover by herself (I hope, it is just a bit of
improvement). No Lyme treatment until now because italian doctors are skeptical about
lyme (and also non trained). She is negative on blood test.
The bit of recovery seems to be simultaneous (after a time lag of days)
with the beginning of the usage of a little quantity of very spicy
"peperoncino", once per day, during meal, not every day.
She did not eat the seeds, just a few pieces of the red skin, a few pieces
as large as a small ant each.
What do you think about ? Would you like to try ?
Let me know...
Giacomo
NOTE: if it could be useful for my daughter and for others, I can send you
our story
(updated as of April 20 1999, clearly unfinished...).

From: CanynBarb@aol.com
To: LymeDisease@juno.com
Date: Sun, 23 May 1999 21:11:26 EDT
Subject: lyme in LA

I am compiling a list of people who have or believe they have Lyme in this
general area.  San Gabriel Valley, Angeles National Forest, the general Los
Angeles area.
I am also collecting ticks, as I am able, and getting them tested. I am
thinking of starting a support group. If anyone would like to join my list,
there are two people on it so far, or would like to go tick
hunting.................................................................

join my list?
contact me by  email  CanynBarb@aol.com
I suffered for over a year, before I found a doctor willing to treat me, in
the absence of any positive tests.  I see Dr. Jeff Harris in Malibu.  He is
not perfect, but he is great! I called Igenex and asked them to give me a
list of doctors in the social area that referred to them on a regular basis.
It worked!
sincerely,
Barbara Hunt

Looking for Lyme Disease in the L.A. Area! Watch out for those DEER TICKS!

News group post
sci.med.diseases.lyme
6-14-16-99

Has anyone been treated by Dr. Yang, in San Diego?  I am at the end of 12 weeks
of I.V. rocephin and have been having continuous herxheimer reactions.  Have
not felt this bad since I was first diagnosed two years ago.  Started this
treatment because of relapse on doxy and biaxin. I only have a few days left,
of  rocephin, and the doc is not sure what he will do if I'm not over the lyme
by then.  It sounds like he's worried about what insurance will do.  He also
thinks 12 weeks treats the "life cycle" of lyme, whether dormant or not.  This
is why I am making an appt. to see Dr Yang.
If anyone has been or is being treated by her, I would appreciate your input as
far as what she has prescribed and how she determines when to stop treatment.
Also her follow up protocol.
  Please respond to this newsgroup, as I don't open emails from names I don't
recognize.  Thank you. Pat.
govertons@aol.comnospam (Govertons)
          ..........................
I tried responding to you last night and for some reason it didn't go
out.  So lets try it again.  My son just had his first visit with Dr.
Yang.  There was a several week lead into the visit, but I believe it
was worth the wait.  However, I was in communication with her during
that time span via Email.  In response to one of my first Emails she
referred me to Dr. Burrascano's treatment guideline.  I noticed that
her lyme questionnaire follows Dr. B's.  Plus the antibiotics that we
are using also follow the guideline.  Two things you might want to
think about regarding her.  First, she LISTENS.  She spent almost an
hour with us going over test results and answering all of our questions.
Second, she is up front with you.  I believe both of these items are
important.  For three years we were told by several MD's that what my
son was experiencing was not Lyme related.  He previously went through
the three week oral antibiotic treatment when LD was first diagnosed.

I've acquired a list of four LLMD's in So. Calif. over the last several
weeks.  Everyone who provided me with a name included her.  I say go
for it.

If you want to discuss this some more Email me.

Good luck.
Mike
mike7701@my-deja.com
        .......................

I've heard good things about her. I've seen another lyme doctor in L.A.
who is knowledgeable but I've butted heads with. It's tough to get an
appt. but, from what others have told me, worth it. Can anybody tell me
what her email is?
stuart_levine@my-deja.com

    ....................
Who's Dr. Yang in San Diego?  Is he a LLMD?  I have people in San Diego
County desperate for LLMDs.  Also, what the heck lab in CONNECTICUT does
this doc in Mexico send his blood work to?  Everybody knows that all of us
folks in Connecticut are negative!!
l_blair@yahoo.com

..................
practice doctor with a clinic in Santee (for all of you negative people
in Conn. thats in San Diego County).  She is also collecting quite a
following.  However, she does work with other doctors.  Last I heard
there is a two - three month lead time for new patients to see her.  I
suggest your following try and get their doctor's attention with Dr.
B's treatment guideline, then make contact with Dr. Yang for a second
opinion, using her as a consultant.  Which is the course I hope to take
with my son.  I've been passing out copies of the treatment guide to
every Dr I know.  Just maybe we might end up with a few more LLMD's.
Mike
mike7701@my-deja.com

.................
x-no-archive:yes

As for responding to e-mails from people you don't know, read the
newsgroup for a while and you will figure out names to open. And, we
would prefer (though it is not a rule) not to have doctor's names
posted, except for those very well known like Burrascano, etc.
If you would care to e-mail me, I would be glad to give you some
information.

barbara n.
barbarajn@eudoramail.com
.....................
No,but there is a very good doctor in Mexico by the name of Dr.Lazo.He
works in Hospital Mexico which is about five minutes from San Diego.

Just goto the hospital and ask for doctor Lazo,by the way, he speaks
very good english. I think you will be very happy with him.
Also, he likes to send your blood in for PCR,ELISA and WB to a lab in
Conn.
As far as buying medicine, I only buy my rocephin or any other medicine
from the hospital directly. The meds are better controled in the
hospital. I would not buy any meds from the hundred or so pharmacies on
the street of Mexico. Only buy from the hospital.
johnammons@webtv.net (John Ammons)
..........
hi Pat,

Usually we don't post Dr. names on the newsgroup unless they have
already entered the public domain, so to speak with their own internet
publications like Burrascano.  This is done to prevent any repercussions
on their own practice as there have been a few incidents in the past
where doctors willing to treat lyme as long as symptoms persist have had
their lives damaged by insurance co driven bad mouthing.

I live in northern CA and know a few people who have seen this doctor
and they all love her.  You might want to accept emails on this topic
from people who don't want to broadcast what could be sensitive info to
the newsgroup.
leema@earthlink.net

..............
NOTE:  some post doctors names some don't
             all doctors names are on the internet at the American Medical Association
             site give  names, addresses, phone numbers, date of license, where lic. came from
             what school they came from, specialty, rectification.  There are many other sites
             you can get  Doctors information by law it is public knowledge.
             Regardless of that I have made contact with several doctors east and west coast
             and none have have ever said they do not want the information made public.
             We are in the habit of giving out the information on a person to person basis
             and will never refuse anyone with that information.

 
From donelec@sierratel.com.

I live in california near Yosemite.  I am very interested in finding some
good experts on this disease.  I think I have it.... now advanced. I had the
bulls eye rash, fever, etc at 14 years old.  Now I am 41 with all the usual
symptoms.  I am highly concerned that no one, since age 14,  could figure
out what was wrong with me.  I didnt see any docs in Fresno, Ca listed.
My insurance allows me to go to Stanford, even though it is pretty far
away.  I would really like to have my current doctor talk with an expert.

I have downloading all sorts of info. on the net to show him.  I plan to call
the hospitals in Fresno and Merced and ask if they have anyone that specializes
in lyme disease.
My current symptoms are fatigue, malaise, and such, is a recoccurance of my hip
joint pain, now joined by shoulder joint pain and my right knee is starting to "tweek".  I am stiff and sore for hours after getting up, and wake up at night
with pain and from the pain.  My legs have pitting edema from the knees down.
a recent echocardiogram about six months ago 10-98 was fine.  I ahve been using diuretic for edema.  I am not allowed NSAIDS  they make my edema worse.
Physical Therapy had been helpful, but my insurance is very stingy with the
visits.  I have recently noticed that it is harder to maintain concentration and
have been making alot of lists.  I am an ER nurse and if this doesnt let up it will
jeopardize my career.  I enjoy my job Im not sure if the concentration problem
is because I am sooo tired or because of this creeping crud no one can diagnose.
I am affraid to tell the doc about this because that would really make me lose
my job.  I am on auto pilot at work.  If i felt i was endangering my patients
i would be the first to go on leave.

update.
I copied a bunch of stuff off the web and will show this to one of our doc who is
interested in lyme.  He was very interested.    As to remember a tick bite
and what it did to me .  I remember I had ticks on me but dont remember the
result.  When i was young, all the kids would run through the coyote brush all
summer.  Docs are saying I just had ringworm.  I dont think that was what it was.
I finally made the comment if this was your family member wouldnt you be highly
concernded?   He admitted he would be.
The docs keep making me feel nuts for wanting all these tests.  Its hard enough
trying to find whats going on with you and educating others about lyme disease
and trying to get treated.    One good thing is  Physical Therapy is helping.
 

---

 
 

I am recently 60 years old, live near Grass Valley, California, and have been diagnosed EXTREMELY positive for Western Blot Lyme Disease (the diagnosing rheumatologist's emphases), after extensive urine and blood sampling, with laboratory testing being accomplished in San Jose, California, and
Connecticut.  I have memory of having tick bites in particular but, having lived in the rural areas of Sacramento and Nevada Counties (in California) most of my life, I do remember being "bitten" on numerous occasions by various insects, and I remember rashes and burns that came and went without being "classic" in appearance. Thus, is the curse of a curly-haired, red-headed, Scotch-Irish youngster, growing up in the hot Sacramento Valley areas. I have had neuro problems since birth, at which time I was born with nystagmus, the continuous back-and-forth movement of my eyes, which was blamed on many things, from pressure against my head during birth, to my very light complexion, due to my Celtic ancestry, to photosensitivity. During adolescence I was plagued with many illnesses, besides the problems related to my extremely "bad" eyes, such as fatigue, dizziness, extreme sunburns, and sunstroke.   Relative to Lyme: At age 21, I awoke one morning with Bell's Palsy, which was blamed by my family doctor at the time on "sleeping by an open window",  to riding a motor scooter, (he thought he had seen me riding  such a machine,  a habit I did not take up until years later). Ever since having the palsy I have had, from time-to-time, severe "tics"  that travel about my head, even onto my face, causing a poking, stabbing ,pain. Sometimes even washing my face causes me to have moderate pain. In addition, at this time, I acquired a constant, loud ringing in both ears, but louder in the right one.
       Because of the condition of my eyes I was never able to join any of the armed services, nor get any higher paying job that required an eye examination as a pre-condition. As a result, I spent many years working with the harsh chemicals and detergents, and hard labor, associated with janitorial work.
At age 26, I was diagnosed with testicular cancer and had surgery, and 48 "deep therapy cobalt" radiation treatments as a result. I returned to the same line of work until,  finally, at age 32, I was hired by the U.S. Army to do the electronics work, in a civilian capacity, that I had trained and studied so long and hard for, but which private industry was reluctant to hire me for. That civil service career lasted until my somewhat "early" retirement from the Air Force twenty five years later "for health reasons", in February, 1999. Other than a bout with kidney stones at age 47, and hernia repairs and lypoma removal (non-malignant, 50 each), in my mid 50's, I remained in fairly good health, other than life-long blood pressure problems, and the residuals from the medication, and occasional fatigue, which I now know wasn't the flu, after all.  My career went from the lifting, and repair, of heavy radios, radars, and teletype machines, (as I grew progressively older and sicker), to thefar less physically strenuous engineering and technical workloads that I finally retired from.
At age 56 I underwent prostate cancer surgery, my options being rather limited by the nerve damage caused by the radiation treatments 30 years earlier, and, needless to say, I was one of the 10 per cent of patients who failed to recover continence, and other urology functions, which resulted in several more surgeries to implant an artificial sphincter device.  Six months after that I had arthroscopy surgery, followed by prescribed physical therapy, for the harsh pains in my right knee, a complete failure because, I later learned, the problem was actually the undiagnosed Lyme Disease.
Six months after the arthroscopy, and following all manner of ER visits for extreme body pain (headaches, legs, arms, back, feet, and especially right-side hip and pelvis, and BP measurements that reached stroke range), and extensive testing (MRI's, angiograms, cat scans, spinal taps), I was diagnosed, yet again, with another tumor, this time a schwanoma (non-malignant) on my L5-lower spine, which was making walking with my left leg progressively worse,to the point I had to use crutches constantly, mostly for balance.  Fortunately, my family doctor saw the need to refer me to the excellent care and treatment of the UCD Medical Center neurological= department, in Sacramento, where I had yet another surgery to remove that tumor. At that time, the chief surgeon indicated he did not think the schwanoma was the cause of all the pain I had been having to that point, so he recommended a series of Electro-magnetic tests to find out how extensive the nerve damage had become since first noticed.. The results indicated I had extensive nerve damage, mostly on the right side of my body, and a further recommendation advised I was to see UCDMC's own rheumatologist. I should point out that, while in my early 50's, I began to feel minor pains in the top of my right foot, then the
bottom of the foot (at which time I was sent, unsuccessfully, to a foot surgeon), then up my leg, into my knee, and finally, the pains grew in severity as they approached my right thigh and hip, and then into my left leg and knee,and then my upper back, until events began to happen, as described in the paragraphs above.
As it turned out, the UCD rheumatoligist was booked up solid for months in advance, and my pain was so severe, that during an emergency pain visit to my family doctor, it was suggested I see Dr. Michael J. Powell, a Grass Valley rheumatologist who, it turns out, specializes in Lyme Disease.
And this is where I came in. Dr. Powell initiated the tests that revealed I, indeed, have Lyme Disease. I am currently taking minacycline for six months, and am continuing to do light work and exercise, and true to predictions, I felt worse at first, before I started feeling slightly better. For the first time in my life my blood pressure is declining. I must continue to wear duragesic patches, a Schedule II narcotic, for severe pain, butsometimes these patches last longer now than they used to, an indication of less pain.
Dr. Powell is very interested in my family history, as might be expected, especially whether or not my mother's family migrated from the east coast to California (as far as can be determined, they have not). He is involved in several studies concerning Western Blot Lyme and its origins, and comes highly recommended in that
endeavor.                                                                                                        He can be reached as follows:
Michael J. Powell D.O.
Rheumatology and Internal Medicine
150 Catherine Lane, Suite 1
Grass Valley, CA, 95945
(530)273-7400

I may be reached as follows:
Charles J. Graham
20335 Casa Loma Road
Grass Valley, CA, 95945
email at cgraham@foothill.net
(530)273-6847

---

From: "papabear@cts.com" <papabear@cts.com>
To: LymeDisease@juno.com
Date: Wed, 14 Apr 1999 12:23:37 -0700 (PDT)
Subject: autobio and M.D.search

I have always thought of myself as an active and capable person, but this
condition is hitting me right in the self-image.  First, have lived in
many states as well as Europe and the Mid-east.  Have lived and hiked/camped
in many areas where Lyme is endemic.  In 1989, camped in Acadia National
Park in Maine.  Found two spots which I assumed to be ringworm, treated with
antifungal creme and they went away.  Two months later, severe pain in
neck, treated with an NSAID which helped.  Eventually severe pain ended, but
neck is still weak, achy and motion is limited.  Three months later
experienced a miscarriage at 11 weeks.  Five years later, experienced severe back pain (thoracic region) during pregnancy.  Severity gradually decreased,
attributed the pain to pregnancy.  Three years after pregnancy, Back
still hurt, went to see chiropractor.  X-Rays revealed spondylitic changes in
spine.  At the same time, began to experience repeated parotid gland
infections, preceded by a feeling of aching and fullness in jaw and gums.

Went to maxillofacial M.D.  -- TMJ ruled out, referred to
endocrinologist.  Blood tests negative for Lupus, Sjogren's, Rheumatoid arthritis, diabetes, and thyroid, but full back X-ray revealed spondylitic changes the full length of the spine.  CT scan revealed enlarged left parotid and enlarged adjacent lymph node.  Went to Rheumatologist, now on Celebrex and Zoloft.

Both help, but pain is with me constantly as well as a daily feeling of
exhaustion and regret that I do not feel "myself".  Wish to discover
cause of this disease and how to stop its progress.  Rheumatologist never
tested for Lyme even though I suggested it.  Now I need an open-minded doctor who will order the tests.  Can anybody refer me to a doctor in the San Diego County area?

Thanks!

---

From: karon@fea.net
To: LymeDisease@juno.com
Date: Thu, 25 Mar 1999 16:48:31 -0800
Subject: <no subject>

Hi,  I live in San Clemente, CA.  Southern Calif.  I'm pretty sure I have
lyme disease, although they keep taking their diagnoses back!  The
Infectious Disease guy doesn't think its here.  I had a positive Elisa and a
positive Western Blot.  I am now on IV Rocephin for 6weeks.  I was bit by
something in June of 97.  I had no symptoms for a year.  Possibly due to
tetracycline and minocin for acne.  Then I had malaise and extreme fatigue
with a low grade fever.  We did 8wks of doxy and I felt much better.  Then I
had back problems.  It turns out I am HLA - B27 positive.  The
Rheumatologist thinks I definately have/had lyme.  He is aggressively
treating the lyme to see if I have lyme arthritis or the lyme triggered the
HLA-B27 gene.  I'm happy to see there is someone who is putting something
together for the west coast..........I for one believe it is here!

Karon

---

From: TEAMRIDE@aol.com
To: lymedisease@juno.com
Date: Mon, 24 May 1999 09:13:04 EDT
Subject: Re: Lyme in Southern California

Dear Lyme R Disease:

Please feel free to post the story.  Actually I can augment the story to
include my frustrating search for a Lyme literate doctor.  I was very
blessed.  My Cousin is head of the infectious diseases laboratory for the
State of Pennsylvania.  I e-mailed him the photos of the EM rash.  He said
find a doctor.  I searched the web after being told by 5 doctors and the
Ventura County Health department that there is no Lyme disease out here.  I
came across a Lyme Support Group person in Bakersfield, CA who was the
closest person to Los Angeles.  I called her (I did not write down her name
and can no longer find the link) and she gave me the name of Dr. Shun Ling in
Tarzana.  Dr. Ling saw me the day I called.  His office was booked so he saw
me after hours.  He spent over 2 hours examining me and giving me information
and details of how the Lyme disease operates.  I am now a year into treatment
and am generally symptom free.
I became one of the victims of the California Blak Spotted Tick on 6 June
1998.  I was one of the fortunate ones.  I got the EM (Rash) and with
absolute luck located a Lyme literated doctor relatively close to my home in
Thousand Oaks, California.  My encounter with CBST was out in Big Sycamore
canyon on the way to the beach (an 8 mile hike).  I stopped for lunch on a
log.  The rest is history.  I consider my self very fortunate.

teamride@aol.com

More later.
Regards,
David Collins

---

From: "Evelyn Frantz" <EGFrantz@email.msn.com>
To: <lymedisease@juno.com>
Date: Sat, 22 May 1999 20:54:37 -0700
Subject: Lyme Specialist

Hello
I suspect I have Lyme.  I was bit by a female black legged tick in Jan 98,
in May developed facial droop and drooling, in June developed Transverse
Myelitis and joint pain, and this winter was diagnosed woth Fibro Myalgia.
The lyme tests were neg, pos, neg.  My MD isn't seeing it as Lyme.  I need
help finding a new one.  I live on the boundries of Santa Cruz, San Benito
and Monterey Cos.  Any suggestions are welcome.  Thanks,
EF

---

I read your bulletin with interest. I am currently being treated by Dr.
Ling and have
been advised by Dr. Yang and an east coast specialist (bernard raxlen)
to get a spect scan and to go IV and start mepron.

History:. I was not diagnosed until roughly 16 months after tick bite. I
did not present in
a typical fashion, no bulls eyes or arthritis. Started abx in Nov
1997.   Two sets of tests over three years confirm babeosis and lyme. I
was on a low doseof doxy and zithro (oral) and getting better for about
a year. Then knocked down even lower and had a bad relapse. This is
where the east coast specialist came in and said go IV. To me this is a
last resort. I am currently on 300 doxy a day, 500mg biaxin + acycolovir
and a load of supplemental vitamins. I would prefer to stick with the
higher doses of orals - the road to IV seems like diminishing returns,
but  I do not have enough evidence to support this fear..

Anecdotal evidence regarding IV worries me. I function pretty well,
work,
exercise, but am symptomatic in varying degrees daily.

What is the best way for me to reach other patients in California as
well as
NY to see the efficacy of IV treatment with chronic lyme vs  aggressive
oral treatment?? Need the latest info on mepron as well. Costs a fortune
-- doesn't appear to have enough clinical trials for my comfort level.

I have always found the people with the disease far more better sources
of information than the doctors - also, I often questions their agendas.

Can you direct me to the best internet site to reach other lyme
patients??

Lastly, there is one very courageous. dedicated  woman in malibu who has
been my lifesaver. I was suprised the bulletin was not written by her,
you share similiar histories.

Any advice or guidance you could give would be great. Thanks, pat

nygirl7@earthlink.net

---

I was bitten by a tick on the front lower leg, (shin). JUNE 15, 1999
I was currently taking 500 mg of augmentin  twice daily for a sinus
 infection.

After finishing the augmentin, then a rash appeared, however it wasn't in
 the shape of A bulls eye. I saw my doctor and she  put me on doxycycline 100mg twice a day for 10
 days.

Today when I woke up both my hands were numb feeling and this has
 continued thru the day.

MY QUESTION IS - DID THE DOCTOR PUT ME ON ENOUGH ANTIBOITICS FOR A LOG
ENOUGH PERIOD TO ELIMINATE THE LYMES DISEASE IF I WOULD HAVE IT????

 THEY ALSO TOOK A LYME TITER, HOWEVER THEY ARE NOT EXPERIENCED IN READING
 THE RESULTS, THEREFORE MY DOCTOR SAID IF I WAS NOT HAVING ANY SYMPTOMS
 NOT TO WORRY.

 I am also trying to get my Dr. to prescribe a Lyme Antigen Test
 from IGeniX,
 any thoughts on this.
Thank You in advance for you information
 I have visited the web site also.
 

vpruett@filenet.com>

My only concern is not to hype people if not necessary.
My Dr. is prescribing the Lyme Antigen Test from IGeniX labs.
Supposedly it is 99.9% accurate, but that was info from the lab itself.
I would like someone or something to confirm that I definitely have
the Disease before I do so (post the story).

---