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Kathryn Harp

Mar 19, 2000, 3:00:00 AM3/19/00


I dedicate this personal story to the bravest woman I have

ever known, Shirley J.
Forsman, Mom. She lived the hell of undiagnosed Lyme Disease
for over nine years.
She knew about Lyme Disease as she was a nurse for all of her
working years. She saw
the tick on her stomach, removed it properly, recognized the EM
Rash that appeared
just days after the bite and went to the Dr. immediately.
Thankfully, she'd had 60
wonderful years before this time. She was an intelligent,
vibrant, loving, giving,
outgoing lady before she died from Lyme Disease, 11-9-1999.
Before I share her story with you, she wanted you to know

Pine County,
Minnesota, numerous other counties in Minnesota, many other
states within the
United States and many countries around the world are infested
with Lyme Diseased
ticks. You are at risk and may already be harboring the
infection. You are responsible
to seek out your diagnosis, ask for the Lyme Disease test, learn

all that you can about
the disease, teach your Dr. all that you learn, get your test
results in your hand, learn
about what they mean, learn about the treatments available, tell

the Dr. which treatment
you need and seek out another Dr. if your requests are not met.
Mom's symptoms were many. She suffered in everyway,
everyday until her last
breath was drawn in the early am, 11-9-1999. She was bitten by
the tick Memorial Day
weekend, 1990, in Pine County, MN. She went to the first of
many Drs. on June 19,
1990. The EM Rash was at least seven inches in diameter on her
stomach, she was
dizzy, fatiqued, had flank pain, nausea, decreased energy,
headaches, blood in her
urine, fevers off and on, vaginal odor, and many other
complaints, at this visit. Her
medical chart lists these symptoms and the diagnosis was "HAS
LIST RASH" which
was treated as ringworm and "CYSTITIS" which was treated as a
bladder infection.
None of these symptoms ever resolved. Bladder infections and
rashes of many kinds
came and went throughout the course of the next nine plus
years. Mom suffered the
arthritis, encephalitis, meningitis, subcutaneous colitis,
cellulitis, conjunctivitis,
floaters, ringing and clacking in her ears, visual
hallucinations, auditory hallucinations,
severe headaches, bells palsy, numbness, tingling, hair loss,
shooting pains,
abdominal pain, belly pain, anorexia, weight loss, diahrrea,
jerking, twitching, grand-mal
seizures, memory loss, dementia, heart block, heart
palpitations, sweating episodes,
momentary blackouts, blurred vision, and incontinence. She lost

the ability to walk, to
talk, to read, to comprehend, to eat, to swallow, to
participate in life and in the end, to
take a breath. She gave up diseased organs from her body
believing it would bring her
some relief. She ingested the many prescriptions: anesthesias,
painkillers, tranquilizers,
prednisone, morphine, pancreatic enzymes, questran, dilantin,
haldol, aspirins,
tylenols, iodine dyes, iodine contrasts, go-litely, the enemas,
the agressive ulcer
therapy meds, vitamin B-12, centrum vitamins, synthroid,
sulfas, and lots of other
short term antibiotics, after surgeries but, the only med that
showed any signs of
bringing her relief came after she was diagnosed properly in
July of 1999, it was
Not one Dr. had ever tested for Lyme Disease. I
requested the test be given to her
in June of 1999. I thought for sure during the course of nine
years one of the Doctors.
had tested for Lyme Disease. They were all aware that this is
what she thought she
had to begin with. She'd traveled extensively throughout the
world and the United
States. The Doctors stated they were testing for every kind of
ova, disease, parasite
and organism that could possibly have infected her. These
Doctors included
Opthamalogists, Audiologists, Hematologists, Urologists,
Gastroenterologists, Family
Practitioners, Internal Medicine, Urology Surgeons, Gall Bladder

Gastroenterology Surgeons, Pancreatic, Kidney and Liver
Doctors, Anesthesiologists,
Emergency Room Doctors, Dentists, Nuerologists, Psychologists,
Psychiatrists, Bone
and Joint Surgeons, Cardiologists, Dieticians, Public Health
Nurses, Social Workers,
Pharmicists and every kind of Technicians you can think of.
Not even one of these
professionals could identify Mom's symptoms with Lyme Disease.
Not even one of
these professionals referred her to a Lyme literate doctor or
even tested her for Lyme
Disease. Not even one of these professionals thought it could
possibly be Lyme
Disease. After three years of continuously searching for answers

they sent her home
from the Mayo Clinic with an Alzheimer's and Crohn's Disease
diagnosis in July of
1993. Yet, Lyme Disease had infiltrated every organ, muscle,
joint, membrane and cell
in her body. She told them all it was the only thing she
thought she might have been
infected with. Not one of these professionals ever tested the
tissue, colon, blood,
urine, gallbladder, stool, or anything else that they got out of

her body during all of
these surgeries for Lyme Disease. Northern Family Medicine,
Bemidji Merit Care,
Bemidji Bone and Joint Surgeons, Bemidji Hearing Center, her
Dentist, North Country
Hospital, Fargo Clinic, the Hospital in Fargo, Mayo Clinic and
the Hospital in
Rochester, all missed the diagnosis. This leads me to believe
that they are under
educated, misinformed, told not to diagnose, told not to treat
disseminated disease, or
they just don't want Lyme Disease to be here. LYME DISEASE IS
I credit Dr. Haggerty, IM at Bemidji Merit Care Clinic for
having an open mind and
the willingness to explore with me the possibility that Mom was
right, she had Lyme
Disease. She died with an accurate diagnosis, SEIZURE DISORDER,

I credit Tom Grier for teaching me about Lyme Disease. I
thank him for the final
three months I had with Mom while on Rocephin. I will treasure
the light in her eyes,
the laughter we shared and the words that came back for her
while on the Rocephin.
She knew she was safe, she knew she was home, she knew she was
loved and she
knew we never gave up on getting an accurate diagnosis. She
knew she had Lyme
Disease and she was able to express her love and appreciation
for all that we did before
she died.
I will always wonder what could have been if she didn't
have to stop the IV
Rocephin and start the orals. I will always wonder why there
are parameters to
medicine when it's working.
I will never forget one day of Mom's suffering. IT WAS NOT



Shirley J. Forsman was uninsured in 1990 as she was unable to
work as a nurse with the debilitating
symptoms of this disease. Every doctor visit, prescription and
surgery was paid for in cash out of her
life savings and sale of her income property. The estimates of these
initial costs to her well exceeded
$100,000.00 and she had to eliminate her assets before Medical
Assistance would help her. Health
Insurance companies of course denied her access to their insurance
because, she had a pre-existing
She made two unsuccessful work attempts in the summers of 1990
and 1991 while suffering Lyme
Disease symptoms. She made these work attempts because, her condition

was misdiagnosed and the
medical bills brought her to near bankruptcy. She suffered everyday
on these jobs and knew that she
should not be making nursing decisions as her thinking was clouded.
Thankfully, no one else suffered.
She applied to receive State Disability in the years 1990, and
1991 so, she could access Medicare.
She was denied because, they determined that she could work with the
all of the misdiagnoses and "A
nurse would be near a bathroom." We appealed these decisions and
lost. Once she had exhausted all
of her assets, Medical Assistance became available to her at a
spenddown of $561.00 per month.
Fortunately, we lived together so, my job covered the living expenses
and the pension she received on
my dad's death covered her spenddown.
Mom turned 62 in 1992 and was able to access early retirement
under my dad's social security.
Medicare picked her up and we immediately took advantage of open
enrollment in Blue Cross/Blue
Shield of MN. By this time, we were deeply in debt but, glad to
finally have medical coverage for her.
Mom started Adult Day Services during the hours that I worked, in

September, 1993 as the Dementia
had completely taken over her life. She was no longer appropriate for

this program by May, 1994 and
was referred to the local Nursing Home. Mom and I determined that a
Nursing Home was not the
approriate placement for her. Beltrami County Nursing Services
stepped in for us. Mom had been the
Nursing Director there. June, 1994 Mom began In-Home Health Services,

while I worked, until she died
11/9/1999. Trazadone and Haldol were introduced in 1994 to help
control Mom's violent episodes. She
made attempts to run away, get away and just walk away in search of
some kind of relief from the hell
that she was living.
Grand -Mal Seizures started during this time and attempts to
control them with Dialantin were
introduced. Dilantin did not work on her Lyme Disease, Grand -Mal
Seizures because, they were caused
by a build up of Quinolinic Acid in her brain and the medication
nearly killed her so, it was stopped as
were many other medications throughout the years. Seizures started
out once every three months, to
once a month, to twice a month and then regularly every nine days,
like clockwork. By now, she had
crossed the threshold of dementia and she died the first time, when
she lost herself.
Dr. Craig Haggerty tested Mom for Lyme Disease 6/1999. Eliza was

positive, out of Fargo Clinic.
Western Blot, was nonconfirming, out of Mayo Clinic. The intent at
this time was not to treat. I taught
Dr. Haggerty everything I learned from Tom Grier as Mom was
seronegative from
cross-reacting/complexed antibodies. Her system was so inhibited by
the disease she didn't display the
immune response in five banded areas on the Western Blot but, by this

time I knew the antibodies were
there, the flagella protein was there and the spirochete band was
there as I had studied Tom Grier's book
on Lyme Disease. I demanded antibiotics be introduced and backed it
by letting Dr. Haggerty know if
he didn't treat, autopsy would produce the spirochetes. I was sure of

this. I contacted Mom's attorney
at this time to let him know I was acting in Mom's best interest, she
could not act on her own behalf and
the family wanted antibiotics introduced to determine if Mom would
respond, she did. Tom Grier agreed
to consult with Dr. Haggerty. I asked Dr. Haggerty to contact Tom
Grier and he did. Three days of
IM-1gr. Rocephin was injected into Mom and a catheter placed to
collect urine for these days. LUAT
antigen tests were then run by IgeneX lab on Mom's urine. Mom's
testing came back 10X Higher than a
Highly Positive Lyme test. Antibiotics had to be introduced to elicit

an immune response to the
organism because, Mom had been harboring the infection so long she
didn't have an immune response
to it anymore, without the help of antibiotics. I had to send Mom's
testing, all of it, out of the state of
Minnesota to get an accurate test. I know Blue Cross/Blue Shield did
not like this but, that's another
Rocephin was working with Mom. The parameters of medicine
evidently determine when you have
to start the orals. That's what Dr. Haggerty told me. Mom's attorney
told me that attorneys and courts
can't tell Doctors what to do when they are operating within the
parameters of medicine. Mom didn't
have a chance at getting well because, of these parameters. Mom's
attorney says we can't sue for
misdiagnosis because, it's been over two-years since she got sick. I
don't know if the Medicare system
cut off her Rocephin, premiums of $50.00 a month, or if her Blue
Cross/Blue Shield of MN, cut it off,
premiums of $152.00 per month, or if Medical Assistance with a
spenddown of $230.00 per month, cut it
off as she was covered by all three. What I do know, is that cutting
off the Rocephin killed her!!!!!!!!! I
know too, that not testing for Lyme Disease in 1990-1999, cost us, the

state, the health insurance
companies, and the government well over $500,000.00. A Lyme Disease
test is $75.00 and she may
have been cured with a couple of months of antibiotics back in 1990.
Lyme testing is grossly misunderstood by Doctors. Lyme Disease
is unquestionably
misunderstood, underdiagnosed and misdiagnosed. We don't have an
Alzheimer's population boom
coming at us. We have a LYME DISEASE EPIDEMIC within the United
States on our hands and the
government should open their eyes to it.
I think about Past President Ronald Reagan, everyday. Mom knew
and worked with him on some
Health Issues in California when he was Governor there and respected
him. He enjoyed horses and to
ride. He probably did so in high risk, tick areas and was at risk
for contracting Lyme Disease. I wonder
if he's been tested or, even treated on his symptoms alone? He's
still walking and talking. Mom would
want him to know, LYME DISEASE MIMICS ALZHEIMER'S!!!!! Mom wants
everyone to know,
I am sorry that I could not contain this message to 100 words.
There is just to much to tell after nine
plus years of living with a Lyme Disease Victim. Especially, when
that person's whole life was dedicated
to healing, protecting and informing the public on Health Issues.
Someone has to help these people
before they die. They die twice you know, first they lose themselves,

then they lose their life.
Her goal would have been to help Lyme Victims. I have videos of
the herxing, jerking, bells palsy,
dementia, grand-mal seizures, night sweats, twitching, carpal tunnel
syndrome, joint inflammation,
rashes and the improvements seen while she was on IV Rocephin 2gr.,
over 300 pages of log notes
written during this time, Mom's medical records and a Death
Certificate that proves, LYME DISEASE

Kathryn J. Harp
1515 Calihan Ave.
Bemidji, MN 56601
(218) 751-1407

I don't question that seronegative disease exists! I know it
does! My mom's antibody testing was positive while the western blot was
negative before, the introduction of antibiotics. After, three days of
IM 1gr. Rocephin was injected into her the urine that flowed into her
catheter bag was not even identifiable to the Home Health Nurse who
checked on her regularly. The LUAT, done by IgeneX lab on this urine
came back 10X higher than a highly positive Lyme test. After one month
of Rocephin IM 1gr injections the Western Blot was redone and sent
out of state. This test was Equivocal. Mom no doubt had
cross-reacting/complexed antibodies but, band 39 surfaced. Band 39 is
specific to
SPIROCHETE. I want you to know that many of the
chronic, neurological, seronegative cases of Lyme Disease are diagnosed
with Dementia and Alzheimer's. They are not aware that this is what
they have. They are in our countries nursing homes and Alzheimer's group

homes. Their families were understandably unable to care for them.
Their lives are horrifying and terrifying both to themselves and their
loved ones. They may be experiencing pain, display bells palsy, carpal
tunnel syndrome, joint inflammation and rashes. They may be having
grand-mal seizures yet, they never had them before, visual and auditory
hallucinations may be present along with unexplained jerking and
twitching episodes, night sweats and THEY'RE AWARE OF IT, BELIEVE
ME! It's terrifying for them. They're unable to do anything about it
because, like my mom, Shirley J. Forsman, they are unable to act on
own behalf. Their families believe like I did, that Dementia and
Alzheimer's are progressive and untreatable and that noone knows what
causes it. There are at least sixty known causes of Dementia and
Alzheimer's. What the Doctors are really telling these patients is that
have not found the cause of their particular onset of Dementia or
Alzheimer's. Mom and I didn't know this or we would never have let the
Doctors stop looking for what made Mom sick. Hindsight is 100%. We
trusted the Doctors. Mistake!!!! What people don't know is that Lyme
Disease mimics Dementia and Alzheimer's. Lyme Disease IS treatable. It
is not the patient or the families fault that Lyme Disease progresses
to the late stage. I believe the Doctor's stop looking for the cause
once Dementia or Alzheimer's are diagnosed. This should not however,
the patient from testing for or, the treatment of Late-Stage, diagnosed
Lyme Disease unless, of course, the OPMC, NIH, CDC, NIAID, AMA,
etc., knows more about late-stage Lyme Disease than they are telling us.

Mom and I were informed that there was no cure for Alzheimer's. IS
THERE NO CURE FOR LYME DISEASE? I have contacted the NY,General
Attorney, Senators, Representatives, CDC, NIH, NIAID, the
MN, Governor, Senators, Representatives, CDC, Dept. of Health and the
Mayo Clinic regarding the misdiagnosis, underdiagnosis,
undertreatment and lack of understanding about this disease. I have
included Mom's personal story and Lyme-suit litigation information with
these contacts. I assure you Dr. Burrascano and the other Lyme Literate
Doctors know what they are talking about when it comes to the
treatment of Lyme Disease. America needs every Lyme Literate Doctor we
have. Minnesota needs them desperately. I would have done
anything to get my mom into Dr. Burrascano but, the lack of knowledge
about Lyme Disease in Minnesota took every penny we had. IV 2gr.
Rocephin was working with Mom. DR. BURRASCANO IS RIGHT ABOUT THIS
DISEASE!!! Placing parameters on Doctors and antibiotics
when treating Lyme Disease IS WRONG!!! These parameters took my mom's
life or she'd have been telling you this herself. You, Michael
are in a position enabling you to get this message out, WILL YOU???
Someone should check the medical histories and spend some time with
the Dementia and Alzheimer's diagnosed patients in nursing homes and
group homes. I'll bet you'll find LYME DISEASE amongst them.
Be sure to introduce the antibiotics before you do the testing. They're
probably seronegative right now. Thanks! Kathryn J. Harp 1515 Calihan
Ave. Bemidji, MN 56601 (218) 751-1407
Kathryn J. Harp <>
- 02/21/00 02:27:41 EST


SSN# 470-26-0991 I am writing to let Minnesota Representatives, Senators

and Health Professionals know that Minnesota is a Lyme
Endemic area. Health professionals are NOT testing for this Disease.
Health professionals within Minnesota do not understand this disease,
the testing for this disease or the treatment of this disease. Minnesota

residents are suffering inhumanely and dying from this disease. They
need your help! Minnesota needs Health Care Education regarding Lyme
Disease. Please, forward and pass this information on to as many
Minnesota Representatives as you can. My mom, Shirley J. Forsman, died
from Lyme Disease 11/9/1999, after suffering for over nine years
with it. It was the only thing she thought she might have been infected
with back in May, 1990. Not even one medical professional was able to
identify the symptoms of this disease. I include herewith, her personal
story and lyme-suit litigation information. Minnesota, this is a wake-up

call. Help these people, NOW!!!!!!!!!!!!!!!!!!! Thank-you for your
prompt attention to this matter. Kathryn J. Harp 1515 Calihan Ave.
MN 56601 (218) 751-1407


Mar 19, 2000, 3:00:00 AM3/19/00
ive had it for nine years and the dimentia is the worst. a doctor gave me doxy
for 4 weeks i feel a little better but i still feel infected


Mar 20, 2000, 3:00:00 AM3/20/00
My father died from Lyme disease as well, although the cause of death on his
death certificate was Parkinson's and Alzheimer's disease.
I had him tested 2 years before his death, and his results were positive. I
convinced his treating physician to give him parental treatment.
He received 2 weeks of IM Rocephin without lidocaine, which was terribly
painful. From my perspective, he seemed to be more responsive after treatment,
but once the treatment was discontinued, he returned to his demented state.
We had a brain autopsy done after his death. While the histopathology was
"interesting" it did not reveal any spirochetes with special staining.
But the tissue DID test PCR positive.


sue in nj

Mar 20, 2000, 3:00:00 AM3/20/00
First of all, I would like to say Hello to Kathyrn and tell you
how sorry I am for the loss of your mother; it is HORRIBLE that
it happened at all. I send you my love and admiration for what
you have endured. I am on a quest until I breath my last breath
that LYME DISEASE get the recognition that it well deserves and
that we shift our focus from AIDS to the #2 fastest growing
infectious disease in the USA (as well as the world!!!). I am a
42 yr old mom, chronic, my husband almost died from a lack of a
diagnosis (bit 1985 and not dxd until April 1998), and now 2 of
my 6 children are chronic (so far). I AM OUTRAGED at what is
happening in our so-called "sophisticated" society here in the
USA. My mom (76yrs old) has lyme, my dad and my step-mom, my
sister, her 3 children, her ex-husband was dxd with MS in 1986
but because last summer I INSISTED that he be tested by a lyme
literate dr. ONCE again, he came up POSITIVE!!!!!He no longer
uses a cane and is improving every day!!! I have another sister,
husband chronic w/ lyme (probably they all do too), BUT ALL OF MY
their business like everything is fine. My mom is loosing her
mind, complains ALL the time of severe heel pain, can't walk
although she had double knee replacement, and has almost all the
symptoms. There is definitely a DENIAL that goes along with lyme,
not only the person that is suffering with it, but also with the
"non-lymies". My parents ALL will end up in nursing homes, dxd
with Alzheimers; I have learned I cannot control the world. I bet
MOST people that are in nursing homes have lyme. I will tell you
that Michael J. Fox has chronic lyme and is either being fooled
being told he has Parkinsons or he knows it is lyme and is now in
private about it. Pres. Reagan, as well as many other political
figures are suffering with lyme--Alzheimers? Addisons disease?
hospitalized with neck pain, severe upper shoulder pain???
hospitalized with heart palpitations??? PLEASE>>>>>>>>
This is all going to come to the surface very shortly.
All we can do is all of us WRITE TO OUR LEGISLATORS and tell your
story, how lyme has affected you and your family. I have so many
personal stories of my loved ones and lyme it is sickening. We
have 15 people on MY block alone, chronic.
In Memory of Shirley J. Forsman, with love and symp

* Sent from RemarQ The Internet's Discussion Network *
The fastest and easiest way to search and participate in Usenet - Free!

sue in nj

Mar 20, 2000, 3:00:00 AM3/20/00
I just want to ask you if you are still on the antibiotics??? you
just say that you had 4 wks. Are you done? would you like some
suggestions of other protocols that will help?
please write me.
sue in nj


Mar 20, 2000, 3:00:00 AM3/20/00
>He received 2 weeks of IM Rocephin without lidocaine, which was terribly
>painful. From my perspective, he seemed to be more responsive after
>treatment, but once the treatment was discontinued, he returned to his
demented state...>

Something similar happened to my girlfriend's Mother (Alzheimer's). Mother had
gotten an infection (lung?) so her MD put her on IV Rocephin. After about a
week or so, Mother got a rash - similar to an LD rash - got sicker (Herx???) so
the MD took her off the IV medication.

The Mother had started talking and making sense for the first time in a few
years! Shortly after discontinuing the Rocephin, the Mother returned to her
vegitative, non-responsive state and stayed that way for another few years
until her death. Carol's Mother died a few weeks after I lost my Sister, just
last month.


Mar 22, 2000, 3:00:00 AM3/22/00
Ditto here. lyme for 25 years. 11 weeks of doxy pulsing 1 week of flagyl. I feel
better then I was, but still like I have the disease.

And Kathy,
That is a shame about your mother! How many have to suffer to get
proper treatment or a lyme dx. I hope this story makes an impact in the court and
all who reads about it. Good Luck!

Nancy B.

Mar 22, 2000, 3:00:00 AM3/22/00
Please remove X from my email address to respond, or modify this:
berntsen*altavista*net . I know this bothers people, but the junk that comes
in my mailbox from not protecting the address really bothers me!
This reminds me of the movie (a true story) Awakenings that Robin Williams
and Robert DeNiro starred in. The patients all had encephalitis in their
childhood and for a brief time responded to dopamine and awakened fully. But
the effects wore off. I don't know if it was viral or bacterial
encephalitis. I'd love to read a book on this if it exists. It reminded me
too much of Lyme disease and it's Alzheimer's type effects.

Nancy B.

non-commercial colloidal silver info:
Lyme Disease support:
Lyme Disease Prayer Hotline:

><> Trust in the Lord with all your heart and lean not on your own
understanding. In all your ways acknowledge him and he will direct your
Proverbs 3:5,6 <><
DenimLD <> wrote in message

Anna Burbank

Apr 2, 2000, 4:00:00 AM4/2/00
I believe the author of the book that the movie was based on is Carl Sachs, a
neurologist who worked in a mental institution. It was available in my library
and very interesting reading. I think it also had a story about a woman who had
syphylis many years ago and had a resurgence of the disease without any current

Jonathan R. Strong

Apr 2, 2000, 4:00:00 AM4/2/00
Anna Burbank wrote:
> I believe the author of the book that the movie was based on is Carl
Sachs, a
> neurologist who worked in a mental institution. It was available in my
> and very interesting reading. I think it also had a story about a woman
who had
> syphylis many years ago and had a resurgence of the disease without any
> exposure.

I believe you're referring to "Oliver Sachs". He's written some excellent
fascinating books about his experiences with patients with various

- Jon

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