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Kenny
I wrote a column about my own frustrations in the Mille Lacs Messenger several years ago. Mille lacs Messenger
I've retired since writing that column, having done so at the end of 2006 in no small respect because of that
disease and its after effects. Fatigue, dropping tools, pain - all contributing factors to my decision to retire. The
biggest problem I've had is with fallout from Rheumatoid Arthritis. To try and summarize this in brief will be difficult,
but let me give it a try.
I never know from one day to the next how I'm going to feel. The weather has nothing to do with it. I can only
remember a couple of days recently where I've made it through the day without problems. Some days I can feel
half ways decent. Other days, like yesterday and today, I've felt totally exhausted. Afternoon naps help very little.
No energy, pains in various places, swelling especially in the hands, feet and ankles. Some days I wake up feeling
OK, but after three or four hours I'm ready for an afternoon nap. The pain element can also be confusing. I went
to the hospital the other day thinking I might be having a heart attack because of pain in my chest and in my left
arm. Turns out, I might have a heart rhythm issue [still unconfirmed], but at the same time I have to wonder if this
is at all related to Rheumatoid Arthritis. It's weird stuff all by itself, but being exacerbated by Lyme's has only made
a bad situation worse. I hurt in the damdest places and in the damdest ways. It comes and it goes, sometimes it's
a sudden sharp pain, sometimes it comes on gradually then goes, sometimes it hangs on for hours, sometimes
only a few seconds, sometimes it hits two or three places, sometimes only one. Fatigue sets in as the pain wears
on me, so then I don't feel like doing anything. It's very frustrating.
I'm also living proof that the Lyme's Test is absolutely worthless. I went to the clinic THREE times before being
diagnosed, and even after being diagnosed - the test was STILL negative!
I've pretty much resigned myself to having to live with the arthritis. While my tolerance for pain is rather high, I
have to resort to an Aleve now and then in order to sleep as the background pain is enough to prevent me from
resting while I sleep. Lots of nights I sleep, but I don't rest because of pain. So I wake up just as tired as I did when
I went to bed.
That is a summary of what I've been living with since 2002. It hasn't gotten any better - in fact it has gradually
worsened. Days like yesterday frustrate me to the point of not knowing how much longer I'll be able to function
normally.
I also have a theory about Lyme's. Since it is a bacterial disease, I think it works much like Tuberculosis. Once you
get the bacteria in you, unless it is ALL killed off, the remaining bacteria goes dormant in you for a certain amount
of time. I'm convinced that Doxycyclin does not kill it all off. Depending on the vulnerability of your immune system,
how long that may take is anyone's guess. However, when it reactivates it will strike at your weakest spot and if
that spot is critical, it quite possibly will kill you.
I'm convinced of a couple of other things. One is that Ticks aren't the only insect capable of carrying Lyme's. The
other is that there are facts about Lyme's that are not being released to the public for fear of panic. Until they find
a way to get this disease under control - if they ever do - those certain facts will be kept under wraps.
There's not much else I can add to this, other than to say that I know of others who have been just as frustrated.
Some are crippled from this, some have died from it or its after effects. Considering that, I guess I have to be
thankful that my condition is no worse than it is. I simply hope and pray that I can continue to put up with it as well
as I have.
Thank you for your time.
Ogilvie Minnesota
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Lynn - I believe I have had Lyme disease since I was 15 years old (I am now 65). I had recurring symptoms since
that time, but they became chronic when I turned 40. At that time, I was dealing with multiple arthritic and
neurological symptoms, including Bell''s palsy, Gullian Barre-like syndrome (paralysis of extremities and spine),
hyper thyroid disease, memory problems and anxiety and depressive symptoms, sleep disturbance and heart
complications. It took 5 more years and 19 doctors to diagnose (clinically and then later, tested positive) by an
expert diagnostician. After the first 2-week IV treatment, I was feeling better than I had in those five years. I have
had to be on continuous antibiotic therapy (mostly oral) for the last 22 years, including IV therapy once a year to
keep the neurological symptoms under control. I, as well as several members of my family have had to struggle to
receive the treatments we needed to remain somewhat healthy or even to get a diagnosis.
In my preparation to found and lead a support group in 1990, I learned that several of the symptoms and rashes
were also evident in my immediate family. When they were tested, my husband and youngest daughter tested
positive and my son, who had more symptoms than the other two, was clinically diagnosed at the same time. We
all were on IV therapy at the same time for a while. My oldest daughter has some of the symptoms (including
hearing loss), but is doing ok. I was devastated when in the middle of my treatment I learned they all were sick.
The doctors believe my children were exposed in the womb. Everyone but me is doing quite well after treatment.
They were diagnosed earlier and are able to remain well through exercise and healthy habits, but you never know
if they will remain that way. Beside those family members, my sister and two of her children and my mother and
father have all subsequently been diagnosed with Lyme disease. My family had a cabin in Aitkin County in the
1950s, a county with twice the infection rate of any other county in Minnesota. That was when we were probably
exposed. I believe that without individualized treatment by my physician, I would either be dead by now, or
perhaps in a nursing home. We need the support our physicians are able to give us.
Please remember me and my family as you debate this bill.
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Liza - I am wholeheartedly supporting the S.F.1631 Bill that is before the House and Senate Committees in the
2010 Legislative Session. Lyme Disease is endemic in Minnesota and the Midwest , yet, medical treatment is not
available for the vast majority of Lyme Sufferers if the disease is not caught early. Since the early symptoms are
simply flu-like in nature, the illness is not identified and treated. For me personally, living my entire life in
Minneapolis, Minnesota , I gave little consideration to Lyme Disease, except that I knew someone who had almost
died from it. Everyone knows someone who got bit by a tick, went to the doctor with a rash, got antibiotics for 3-4
weeks, and was considered cured. For me, I walked around with the disease NOT KNOWING I HAD IT until it
began to disable me in September 2007 with dizzy spells, imbalance, inability to stand/walk/drive, tremors,
seizures, severe insomnia, cognitive impairments and depression. I did not receive testing for Lyme Disease until
May 2009, despite my seeing prominent Neurologists at the University of Minnesota, Cardiologists,
Gastroenterologists, Ear Nose and Throat Doctors, Sleep Medicine Physicians, Epileptologists,
Neuropyschologists, etc.
I thought my life was over. I planned to die, not knowing what I had. I was age 30 at the time. When I got my Lyme
Diagnosis in mid-2009, I was relieved, but as I was to discover, treatment was not available for me at my late-
stage. Physicians follow outdated guidelines drafted by the Infectious Disease Society of America that allow
treatment of ONLY acute Lyme Disease infections, although the bacteria evades the immune system response
and burrows into the brain, spinal cord, heart, liver, kidneys, and nearly every organ and tissue in the body. I was
fortunate to discover by word-of-mouth through the countless number of other chronic/late-stage Lyme Disease
sufferers that there was hope for me, but that I would have to travel out-of-state which is by design, out-of-network
and that all medical treatments I received would be devastatingly, out of pocket.
However, I know I have improved with the Lyme Literate Medical Doctor I see 250 miles away and I'm now into my
6th month of treatment with possibly another 6-12 months planned for antibiotic treatment. I cannot explain the
horror of this disease except that it slowly kills you if left untreated. Besides work, I am homebound and have been
mostly bedridden for the past 2 years. Luckily, I found help, but am disheartened to know that possibly thousands
of people in MN are left without proper diagnosis and with the financial burden of self-funded medical treatment.
I am gainfully employed, college educated, have a position with a local government agency, have good insurance,
but yet this disease had snowballed so hard that without long-term antibiotic treatment (which is currently
prescribed for acne, but not for a fatal bacterial infection like Lyme), I was in jeopardy of losing my livelihood, my
home, my insurance, my physical and mental health, all because sometime in the past I acquired a tick-borne
infection. The state of Minnesota would have been supporting me as an invalid, legally disabled, dependent on
welfare/social security at age 32 if I hadn't found the appropriate treatment across state borders.
I plead urgently and hope that Medical Doctors in Minnesota become educated "Lyme-Literate" and trained to
treat Lyme Disease as not a simple 28-day treatment, but as a complex multi-systemic immune system disease,
like HIV or Neuro-Syphillis. The state of Connecticut (where Lyme was discovered in the 1980's) has passed
similar legislation to the proposal you must consider in 2010. There is also a 2010 Federal Bill, HR 1179/S 1352
which will address Educating Physicians and Surveillance/Testing for Lyme Disease called the "Lyme & Tick-
Borne Diseases Prevention, Education & Research Act of 2009." Therefore, I respectfully ask you to support local
efforts made by Rep. Ward, Sen. Marty and Sen. Vandeveer to advocate for appropriate treatment so that
physicians do not fear losing their medical licenses for longer than 28-day antibiotic prescription (as determined
by the Physician).
Let's let Minnesota Doctors treat Minnesota patients!
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Lyme disease motivates local woman to save others
Wednesday, 15 April 2009
North Branch resident Charlene Smith is using May, Lyme Disease Awareness
Month, to share her devastating experience. She hopes her story will help
educate others and raise awareness about Lyme disease and tick-borne illnesses.
Minnesotans live in a high-risk area for Lyme disease, a bacterial infection
most commonly contracted from a tick bite that initially may cause flu-like symptoms.
Though it seems people in healthcare should be able to diagnose this disease easily,
for many, that is not the case.
Pictured: Once North Branch resident Charlene Smith discovered she had Lyme disease she noticed her
symptoms were comparable to those of her horse Sierra. Sierra suffered a “mysterious illness” for seven years
before a Lyme disease test confirmed the horse, as its owner, had the disease. After beginning treatment in
November 2008
Smith’s health continues to improve, and Sierra is now symptom-free. (Photo by Heidi Schauer) read more
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