---

I received this email address from the Lyme Disease Association Website.  I
was diagnosed with the disease 3 months ago.  I live in Hood River, OR, and
the local doctors really are not equipped to deal with the disease.  I was
hoping that you may have the names of specialists in the Portland, OR area
whom I could contact for continuing treatment.  You can reach me by
replying to this email, or at tmccullough@temcoinc.com
 
Thanks for your help.
 
Tom
 
 
 
 

---

 

7-00
Hi~
  My name is Sharon and I live in the Southern mid-section of Oregon. I have had lyme for 3 yrs. now without being able to find a Dr. in my area.
I have spoken to Rita with the Portland support group and she recommended Drs in California.
Is there anyone who is worth going to in Washington?  Sacramento and So. Calif. are such a long way for me to go.
  I was recommended a Dr. Jonathan Wright in Kent by the Arthritis Trust of America.......would you know if he is a capable Dr for lyme, or even anything negative? That organization promotes Tinidazole and Flagyl for what they believe is an amoebic cause of arthritis.
Most of my symptoms now are joint related....
Thanks for any help you can give me.

goforit@bendnet.com

My husband could have  had lymes in l971, 4 years before he met me when
he came down with meningitis and arthritis in Wisconsin, where he used
to hunt and fish in the wooded areas.  He had such bad arthritis when he
started college, he could hardly walk. And he had been an athlete.
Through determination, he did some athletics and later worked 60 hours a
week even though he didn't feel well. He also developed sensitivities to
cigarette smoke, pollen, dust, and gas & diesel smells on the roads.  He
had very sensitive eyes for many years.  When he was 33,  he got a
bullseye rash and went to the doctor because he was concerned about
lymes.  He had a positive lymes test in l986 and went on Tetracycline
for l0 days. The Dr. was confused because it was an "old infection"
according to the antibody titer. We didn't get records and I don't know
what numbers he had on tests.  Don't know if it got cured but he still
had arthritis after.  He is getting tested and is waiting for the
Antigen test results for lymes.  He has been developing many food
allergies lately.  Doesn't tolerate some fruits, peanuts, vinegar.
But generally feeling better than he had in the past 28 years.

I have just been diagnosed 3 weeks ago with lymes. I have had a ton of
health problems. I had not been sick much in my life until we lived in
the Iron Mountain, Michigan, region--Quinnesec, Michigan, to be exact.
But Quinnesec is a very small town and you'd never find it on a map.
But it is just north of the Wisconsin-Michigan border. We moved to
Quinnesec when I was 7 months pregnant.  My first child was born in l981
there.  I had a codeine reaction to the medication the nurse gave me by
accident in the hospital.  I had a sign next to my bed that I was
allergic to codeine and she gave me the wrong pill my mistake and I was
allergic to it.  I had gotten swollen feet and very sick and had to stay
in the hospital for 8 days just to have a child.  I never really
recovered after that.

My son will have to be tested because he could have gotten lymes through
the placenta.  But he was hyperactive and got up at 3:30 am and ran all
day except for his nap. He was allergic to molds, dust mites, and
cornsyrup and sugar products as a kid. He had a negative lymes test when
he was 8 yrs old and still has minor arthritis problems.  But he is a
freshman in college and doing very well. I had always required him to
eat a good diet to stay healthy and not get sick. That sugar just set
him off and made him hyper. He had a lot of antibiotics as a kid with
impetigo, chronic sinus infections, and ringworm.  He used to have food
allergies but today is healthy and can eat anything.

After my son's birth, I was always tired and had started getting
"Bronchitis" (I have gotten that same "bronchitis" for the first 2 weeks
I was on my doxycycline and recognized the same breathing problem I had
in the past.  I would go on Erythromycin for it and it took l month to
recover)  I had a second child 2 years later.  I was nauseaus the entire
9 months.  I was lucky my daughter was an angel because I had no energy
to chase after her.  But I gradually got more bronchitis up to 4 times a
year. We moved to Stevens Point by this time.  I started to having
sleeping problems. I just could not sleep. I was hyper.  My daughter
woke up 3 times a night and my son was up at 4 am and I was exhausted
and couldn't sleep over 3 hours a night. I went to the Dr.who said I was
manic depressive.  Since I was 30 years old and had never had problems
before, I didn't believe him.  He sent me to a psychologist and he just
gave me a tranquilizer so I could sleep and I needed it for l year.

Paint smells and newspaper smells started to make me sick. I also
started to not tolerate milk products and beef.  I had allergy testing
and neither showed up on tests. I also started to get allergic to mold
and that didn't show up either on skin tests.  In l986 I had severe body
aches all over my body for 6 weeks.  It went away. I was very, very
tired all the time.  Then  in l987, I got severe aches all over my body
from head to toe and it didn't go away. I went to my Dr. He again said I
was manic depressive and said I needed to see a psychologist. I went to
a different Dr.  The internist at Marshfield Clinic at Wisconsin said I
had arthritis. He put me on naprosyn. That naprosyn caused me to get
more food allergies and candida but I just took it because I hurt so
much and couldn't sleep with the pain.

We moved to Oregon and I was referred to a Rheumatologist in l988. He
said I had fibromyalgia and put me on a low dose antidepressant. In one
week I didn't hurt and went off of all medicine. Every year I would get
a stiff neck with a virus and would need to take that medicine for
several years after.  But the fibromyalgia went away.

I started to get worse food and chemical allergies.  I was able to work
as a Med Tech from l990 till l995 parttime. Some years I worked full
time.  It seemed like moving away from the moldy basements in Wis helped
me feel better.  It is also very humid there in the summer.  I always
get sick with mold allergies when I visit.  But I had to get allergy
shots for mold, pollen, dust, chemicals, manyfoods and treatment for
Candida and imbalanced bacteria in my digestive system.  I also had
sinus problems off and on and needed antihistamines.  I got so allergic
to perfume I had to quit working in l996 and couldn't go anywhere for 3
years.  I had 3 years of epd allergy shots and am to the point I can go
shopping and can tolerate the fertilizers in the neighbors' yards so I
can go outside for short periods. I still get sick if the neighbor uses
fabric softener in her dryer and have to stay in the house and close
windows.

My main problem is mold allergy with LP siding with mushrooms on it for
the past 6 years. I got so severelely allergic to mold I started to pass
out in l998. I believe the mold allergies encourage the lymes to grow.
The other day I cleaned out some mold in a bathroom and that night I got
very nauseaus from my doxycycline an hour after taking it and it lasted
an hour. So I am positive I get lymes growth with mold and chemical
exposures.  For the first 2 weeks on medicine I hurt from head to toe in
all muscles and joints. I was unable to breath and had congestion in
sinuses and lungs just like years ago.  I had upset stomach, which seems
to be better since we got new siding last month. I also discovered when
they took off the moldy siding that there was dry rot in areas, mold on
70% of the house and no vapor barrier in our bedroom area. So the mold
would go in the bathrooms and I had to use a toothbrush weekly to get it
out--I didn't tolerate bleach in the past. So now the mold is getting
under control gradually. I still have some bedrooms and closets with
moldy boxes from the siding spreading it through the house. I helped
clean some dust last week and got indigestion and nausea from the mold,
which also seems to trigger lymes growth. So I got some mold medicine
that is helping gradually. I have been going to an environmental
allergist for the past 4 years and I am also on diflucan with my
systemic candida infections.

My Dr. has been treating my imbalance of bacteria in my intestines. I
had infections with Klebsiella pneumonia and  Citrobacter freundii,
which were in large numbers and pathogenic in large numbers.  I also
have been treated for anaerobes with flagyll.  Dr. suspects parasites
too but not show up on cultures. I had celiac disease and have an
antibody to the gliaden in gluten and cannot ever eat wheat, rye, barley
or oats.Gluten allergies are permanent so I must be on a gluten-free
diet forever.  Celiac disease is inherited but you need a shock like
lymes to trigger it.  In celiacs, 95% have diarrhea and I had never had
diarrhea and never imagined I had that. But my Dr. is thorough and found
it 4 yrs ago.  So with the celiac disease, candida and bacterial
imbalance, I would take acidophilus and never get good bacteria growing.
I now know it was the lymes that caused the imbalance.  After being on
the medicine 2 l/2 weeks I was able to eat prime rib, tomatoes,
potatoes, and homemade ice cream. So there is a big positive change in
my digestive system.  Noone ever revealed lymes could be in the sinuses
until I read it in your bio.  But I believe it is in my entire body. I
even lost bladder control when I sneeze during the past year and that is
better now too. I believe it was in my bladder too.

My daughter probably had lymes when born. She was born with her spine
not closed up by her tailbone. She was able to contort her body because
of this and could turn herself around and look at her tailbone and saw
it didn't heal until she was about 6 yrs old. She had a sinus infection
at 3 weeks, many ear infections, skin problems. She has similar food and
environmental allergies as I. She also has candida, but it is under
control. She probably has lymes because she got such a stomach ache with
the doxycycline for the urine test. She was in severe pain for 4 hours
after taking it the first time. She has had helicobacter pylori
infections and parasites. She used to swallow the water and in 4th grade
she went to a camp with a lake and swallowed water with parasites.  So
she had to take medicine for that. The Dr. was confused because the
antibiotics and herbal medicines that worked for others didn't work for
her.  So he ended up putting her on flagyll, a really harsh drug for a
little girl.  But it cleared up the Blastocystis hominis, entamoeba
histolytica and hartmanii.  She had bad chemical sensitivities and got
pretty much cured with the epd shots.  She has a cyst that showed up on
her elbow 2 weeks ago,  I believe it is part of her lymes.

I also had a ganglion cyst on my index finger at the last joint. It used
to hurt so bad in l992 and it got red and swollen. I had to get
hydrocortisone shots.  Then it went away until last month when I went on
the doxycycline for the urine test for antigen for lymes.  It errupted
and lasted until I was on the doxycycline for 2 l/2 weeks.  It is pretty
much gone now. I have been on the medicine for 3 weeks and 3 days
today.  I also got a goutlike pain in my left large toe joint for many
years. My daughter got the same pain 2 days ago and it was red and
swollen in her big toe. We need to wait another 2 weeks for her lymes
test. I want to participate in that NIH study with her so the authrities
can truthfully say it does pass through the placenta. My daughter has it
and not doubt about it.  Drs. say it only happens in mice and not people
from what I read.  So that is my story.  But I plan to make a full and
complete recovery in 3 months.  I plan to go to Jr. college and learn
computer programming because I cannot work with chemicals in a lab.  But
that is a start of a new millenium so I am eager for a healthy century!
In July, my light sensitivity with my eyes had caused me to not see.  I
was getting a blinding from the dullest of light when I had these
attacks. I thought I had MS but am much happier to find out it is only
lymes.  At least antibiotics can get rid of lymes. And I will not be
blind like some people. I saw some people with seeing eye dogs and am
thankful that my Dr. figured out this awful disease before I got that or
alzheimers. My family knew I was dyslexic and that was good to know it
is caused by an infection and I won't have to be put away in a hospital
for alzheimers at 50. In fact I look forward to being 50 in 5 years. I
will definitely feel better than I did at 30!  Take care, Mary Beck
Hi again: I forgot to add that I have had TMJ, what a dentist called TMJ
anyways. I thought it was related to my sinus problems with allergies
for the past 5 years.  Then I went on the doxycycline for 2 days for the
test and my jaw went down in size and I could feel my jawbone.  I
haven't been able to feel that for many years.  I also have much less
pain and can chew on that side of my mouth. I had to get a crown on a
molar there in April.  In 1993 I had to get one on the other side and in
l982 I had to get a 3rd done on the other side. The jaw hurt so bad in
all three times.  I had a problem in l982 when I had an abscessed tooth
in addition to a cracked molar. The first dentist took xrays and nothing
showed up. I got a second opinion and nothing showed up on xrays for him
either. Then I still couldn't put pressure on the crown and went back to
the first one and he drilled into the crown and found a full-blown
abscess that hid from xrays for 2 different dentists.  I figure maybe it
was lymes now.  Did you ever hear about this?  But I think the lymes
attacks the nerves and kills the molars and then it can form abscesses
or enable other bacteria to form abscesses.    Take care, Mary

pacificcraftsup@navicom.com

From:       jjlawson@pacifier.com
 

I am currently seeing a doctor in Canby, Oregon for lyme disease.  He
isn't familiar with this though.  I live in Southwest Washington.  He is
a good doctor but doesn't have experience.  What would you suggest?  I
have been taking 200mg of Doxy a day for a month now.  I haven't noticed
much change.  My doctor is willing to learn about it, but do I want to be
a guinea?
    I tested positive three times to the LUAT test.  My numbers were 128,
31, 82.  This was after one IV antibiotic injection.
    I have been sick for five years.  I am 24 years old.

I hope you can direct me in the right direction.

Jeremy jjlawson@pacifier.com
 

As publsihed in the Lyme Alliance, Dec 1998 Newsleter
 

     My Lyme Disease Experience in the State of Oregon

            By Rita Stanley

                I have had Lyme disease for many years, and have been
bitten by ticks on both East and West coasts. My latest exposure was in
June of 1991, in Washington County, Oregon. Although I saw the tick and
the rash, because it was believed that Lyme didn't exist in Oregon, my
diagnosis was delayed. The cumulative effect of multiple exposures to the
Lyme bacterium made my disease much more difficult to manage. In
addition, I recently found out that I had another tick-borne disease,
Babesiosis, a malarial-like infection. I am the first reported Babesiosis case in Oregon.

            The symptoms that I had before this latest exposure involved
many areas of my body, but I was able to deal with these problems
somehow. Following the last bite, I went downhill rapidly - especially in
neurological areas. By December of that year, my goal was to simply wash
the kitchen floor. I had full body pain, frightening central and
peripheral neurological problems, cardiac symptoms, profound fatigue, and
was in despair. The list of symptoms was so long and contained so many
bizarre things, such as jerking, spasms, hallucinations, shooting pains,
flushing, trembling, dimming of vision in one eye, drooling, head
"pressure", etc., that I could not accept that I actually had them. At my
point of deepest despair, I almost accepted the "hysterical woman"
suggestion of a few doctors, just so someone could start trying to help
me. One doctor gave me my money back to get rid of me! My husband, who
never doubted my illness, insisted I go get a psychological evaluation to
rule out psychiatric possibilities. And, that approach did seem to work.

            My husband found an article on Lyme, and suggested that as a
possibility because of the tick bite in June, but it was I who doubted it
and wanted to actually rule Lyme out. However, after talking to a vet at
the State Health Department, I was convinced to see a doctor who knew
about the disease. I was in luck in those days. The doctor who began
treating me also had the disease and understood it very well; he was able
to work with me in a compassionate and open-minded way. Following one
year of antibiotic treatment, I could wash my floor and do a bit more of
my housework. After two years, I was functioning better, but still in
much neuralogic and arthritic pain. After over 6 years of antibiotic
therapy, I am functioning well, but do appear to have persisting disease,
that, at this point, causes relapses at some point following antibiotic
withdrawal.

            My doctor, who treated me initially, had his practice limited
in 1993 because of  "overdiagnosis and overtreatment". Since then, it has
been a struggle for me and for others in this area of the country to get
treatment, other than that of an extremely conservative nature. It is
from this perspective, going from excellent care to its total loss and
the ramifications, that has lead me to believe that the Lyme Community
must say loud and clearly, and over and over again, what abuses exist.
 

              Because of my health, I have never returned to baying
work. However, I take care of my family and am doing volunteer work in
the Lyme community. I never set out to do Lyme work; it defaulted to me
somehow when Lyme patients found it almost impossible to get adequate
care in the northwest. I had started out to simply "spread the word" by
increasing access to resources; but found that the affects of academics,
politics, and questionable medical ethics were what was driving advancement in
diagnosis and treatment.

            The work I used to do was in the academic arena, teaching and
tutoring, and sales. So you can understand that this disease has taken
much from me professionally. But, being in the middle of a firestorm on
inadequate patient care and doctor harassment has added a lot to my
understanding of the reasons why there is so much difficulty in
recognizing and properly taking care of patients with Lyme disease.

            Presently, I am a Lyme support group leader covering the NW
states, and am on the boards and committees of several Lyme
organizations. Our main resource center is at Good Samaritan Hospital in
Portland, Oregon, where patients and doctors can call and receive
information about Lyme and other tick-borne disease; books and tapes can
be borrowed free of charge. I have also been involved in several
demonstrations undertaken by the Lyme community in attempt to get our
stories out, and to relate our difficulties in receiving medical help.

NW Lyme Disease Support Network
(Portland)
Rita Stanley, Ph.D.
c/o Good Samaritan Hospital
1015 NW 22nd Ave., N-300
Portland, Oregon 97210
E-mail: ritastan@worldnet.att.net
(503) 413-7348
* regularly scheduled meetings

NW Lyme Disease Support Network   (The Dalles)
Vickie Lawson
(541) 296-9597