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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) Click here to read the rest
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) Click here to read the rest
Sheri
Prior to my Lyme disease I was a distance runner in excellent health. On September 21, 2005 I experienced strange tingling sensation on right side of
face/head and terrible back pain. The next morning I discovered an atypical rash with an area of erythema and a swollen right underarm lymph node.The
diagnosis given was shingles. Shortly thereafter, contracted strep and put on penicillin. I began to feel worse not better and began experiencing odd muscle
twitching throughout my body. A lyme titer test came back borderline and I was put on Doxycycline for 14 days with little improvement. Many tests followed,
thyroid function, MRI, CAT scans, EMG and EEG as well as too many blood tests to mention. All tests normal with no explanation for my failing health.
Symptoms included nausea, abdominal pain, fatigue, insomnia, daily late afternoon jitteriness, panic attacks, severe muscle twitching/spasms and mylonic
jerking and horrible sleep disturbances. Told repeatedly by fami ly doctor “just a virus". By Christmas 2005 knees became excruciatingly painful,
legs/muscles ached and walking became difficult. Numerous visits to emergency rooms revealed only low potassium. Saw an infectious disease doctor who I
had hoped would end my living nightmare. He glanced at my, what he quoted as, "copious notes" and refused to acknowledge my concerns. He chalked
everything up to anxiety and possible fibromyalgia. In January 2006, by divine intervention, found lyme literate doctor that started me on an aggressive
treatment for chronic lyme disease. My lyme recovery has been slow, painful, and quite challenging. The saying "no pain no gain" proved valid in that I am
running and biking once again. Thousands of dollars were spent seeking diagnosis as well as an astounding amount for ongoing treatment. The blatant
denial and widespread ignorance within the medical establishment has been the most significant impasse in dealing with this complex disease. Joining the
Minnesota Lyme Action Group has been a true blessing. It's given validity to my experience and allowed me the opportunity to meet some incredible people .
Those of us who have endured too long with this painful, frightening disease must continue to demand dignity, proper care, and adequate treatment for all!
Laura
Frightened by ALS diagnosis, she faced more tests, more uncertainty...
In November 2004, Laura of Stacy developed a left foot drop, which is the inability to turn the ankle or toes upward. Her doctors treated it as plantar fasciitis.
In June 2005, she developed drop foot in both feet.
The registered nurse then knew she had a neurological problem. Laura underwent numerous tests and MRIs and continued to see her neurologist for her
loss of balance, frequent tripping and bad headaches. "These headaches could be described as 'meningitis-type' headaches. I could not stand to have
someone else in bed with me. I slept sitting up, but still would wake up crying in a harsh pain. The neurologist continued with a painful EMG test, blood tests
and spinal taps. Everything came back negative.
"In August 2006, I was diagnosed with ALS (Lou Gehrig's disease). This is a devastating diagnosis. I began to prepare my family finances, knowing I would
soon be disabled. Lou Gehrig's disease can be disabling to fatal within two years.
"For four months, I watched my health deteriorate. I began to fall into walls when unplugging IV pumps, drop a fork while eating and choke on my food. The
left side of my throat was numb, and I choked at just about every meal, no matter how I concentrated on eating. I was so forgetful. I forgot to pick up my son
from school on a number of occasions. Grocery shopping became a dreaded nightmare.
"I was sleeping 14 hours a day. If I wasn't sleeping, I was scared. In November 2006, I was put on an antibiotic for a sinus infection, and about seven days
through the course of the antibiotic, my left foot started to get some sensation back. Lou Gehrig's disease never has episodes where a person gets better,
so I called the neurologist. I was adamant that we needed to figure this out.
"After more evaluation, multiple sclerosis was then a possible diagnosis. I continued to see the neurologist, and through much research, we decided to do a
specialized test for Lyme disease that is sent to California for results. The test came back positive. I had Lyme disease. "I possibly got it in grassy, brushy
areas in Anoka county, where I live. I do not recall an ill period except when I was camping at Pine River. I had fever, chills, nausea, body pain and
weakness. "My emotional shift from not having ALS was overwhelming euphoria. I had a disease that is more treatable. I wanted to do everything. I was very
frustrated it took two years to diagnose and that we do not have the technology to better test for Lyme disease. "The new challenge was to find a medical
doctor trained to treat Lyme disease. If you get the 'classic' bull's-eye rash for Lyme disease and are treated with adequate antibiotics, the chances are you
will never go down the road I have been down.
"Unfortunately, if the Lyme spirochete, B. burgdorferi, crosses the blood-brain barrier, it can have devastating, crippling effects and possibly death — if it
affects the wrong parts of the brain.
"Through persistent searching of the Web, friends, contacts and the Minnesota Lyme Action Support Group, I was able to find a physician who did a
wonderful job treating my Lyme disease. "I was on antibiotics for one year, most of my symptoms have resolved. On days I feel great, I go out and do too
many things. I become overwhelmingly fatigued and many times, depressed. It appears this will be a roller-coaster ride, but my health is on the incline and
that is what counts. I can take bumps in the road. I'm so much better than a year ago."
Laura's story was featured in the Pioneer Press Turn the Corner section.
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Brenda - Lyme Rash but still no diagnosis
My story begins with some vague symptoms in the summer of 2006. First was joint pain and swelling that came and went so I didn't think anything of it at
the time, you know just getting older.
Then I started smelling weird smells, usually cigarette smoke. I didn't know what to think of that, but then it came and went too so I wasn't too concerned. I
began to hear doors shutting, a beep of an alarm or other short but identifiable sounds. I knew none of them actually took place.
In January 2007, I got up in the middle of the night and my left eye lid didn't want to wake up, it just laid there. No pain, no numbness, no other symptoms.
Since my sleep pattern had recently became a real issue I just thought I was so extremely fatigued it didn't want to wake up either. That came and went too
and was either eye but not both at the same time.
In April I got a solid red rash on one leg then two weeks later the same type rash showed up on the other leg. They stayed for about four weeks and
started to fade. Then came the bullseye rash. It was the typical bullseye rash except it did not spread more than two and one half inches like you hear it
always should to be considered the 'typical' lyme rash.
Now my eyesight was getting blurry and I was having eye pain. I found out my left eye muscle wasn't working properly anymore and, yes indeed, I needed
to get a stronger prescription for my glasses and prisms because the eye muscles were no longer working together.
I finally decided to see my regular family doctor who diagnosed me with ring worm and ran an ELISA test. She had no idea what the deal was with my eye.
Two weeks later the rash nor my eye were getting any better so I went back to the same clinic and saw doctor no#2 who diagnosed me with ring worm and
did a Western Blot test. Since my ELISA test came back negative she said, "if the Western Blot test comes back negative I am 100% positive you do not
have Lyme disease". She had no idea about my eye and dismissed all my other symptoms. The Western Blot test came back negative so I called her back
and asked what the next step was, she directed me to go to a dermatologist.
The dermatologist asked if I had any other symptoms. I named two and he put me on two months worth of doxycycline.
I again called my doctor as my symptoms were all still there and some getting worse. She advised me to see a neurologist. The neurologist ran another
Western Blot test - guess what, negative again. He ordered an MRI and a blood test for myasthenia gravis. By the time I went for a follow up visit I did
have a positive IGeneX test showing positive for Lyme and Babesia. The neurologist dismissed this test saying it was done by some ‘funky’ lab. Both the
MRI and blood tests he did came back normal leaving the neurologist baffled. His only suggestion was to give me an IV drip of steroids and anti-
inflammatory medications for the severe headaches that had now turned into migraines.
The ophthalmologist had no idea about the eye lid drop due to the fact the myasthenia gravis test came back normal. At the beginning of 2007 I had no
eye issues, in June of that year I needed one prism in my glasses and by October I now needed two prisms in my glasses due to convergence disorder.
At this point I can't do simple computations, could hardly do my job at work as I was forgetting how to do regular weekly tasks, severe joint pain like broken
glass, fatigue that was severe (sleeping up to 13 hours a day with no relief from the fatigue), migraine headaches, constant excruciating pressure in my
head, heart pain and muscle weakness.
My hero in the whole saga came in the form of a chiropractor up in Chisago City. She ordered an IGeneX test which finally gave me answers most if not all
of my symptoms. The chiropractor is also helping me with probiotics, vitamins, nutritional counseling, and help to reduce pain and inflammation from two
prior autoimmune diseases. Now came the second task of finding a doctor who would treat the Lyme disease.
The day I received my results from the IGeneX test my daughter called and said she had a positive ELISA test for lyme. That was not a very good day to
say the least. So now my sister, her husband, their dog, my daughter and myself all have tested positive for Lyme disease.
The infectious disease doctor I saw in the St. Paul area refused to accept the IGeneX lab results and dismissed my symptoms. He said I needed to go see
and ophthalmologist, a neurologist, and a dermatologist, when I told him I already had he wanted to know what they said. Each of those doctors wanted me
to see an infectious disease doctor as they all wanted an evaluation for Lyme disease. His only suggestion was sleep medications and said if I get more
sleep most if not all of my symptoms would go away.
By now the left eye lid problem is a daily occurrence, the left eye muscle is working less and less, and the left side of my face went numb and was hanging
like I had bells palsy.
I have since moved onto another infectious disease doctor who did use the IGeneX test results and my symptoms to base his treatment plan on.
I was on antibiotics for five months with quite a few of my symptoms getting better. I hit a plateau so we decided to try and take me off for a few months to
see what would happen. Within a few weeks I got a rash back on my leg, the fatigue was so severe it was interfering with everyday life. My legs became
weak and I started falling on the ground. A new regiment of antibiotics were started at that point for the next 6 months. Thankfully, I regained use of my
legs.
The nerve damage done by the bacteria to my eye and face will probably be permanent at this point. Early treatment is best.
My story begins with some vague symptoms in the summer of 2006. First was joint pain and swelling that came and went so I didn't think anything of it at
the time, you know just getting older.
Then I started smelling weird smells, usually cigarette smoke. I didn't know what to think of that, but then it came and went too so I wasn't too concerned. I
began to hear doors shutting, a beep of an alarm or other short but identifiable sounds. I knew none of them actually took place.
In January 2007, I got up in the middle of the night and my left eye lid didn't want to wake up, it just laid there. No pain, no numbness, no other symptoms.
Since my sleep pattern had recently became a real issue I just thought I was so extremely fatigued it didn't want to wake up either. That came and went too
and was either eye but not both at the same time.
In April I got a solid red rash on one leg then two weeks later the same type rash showed up on the other leg. They stayed for about four weeks and
started to fade. Then came the bullseye rash. It was the typical bullseye rash except it did not spread more than two and one half inches like you hear it
always should to be considered the 'typical' lyme rash.
Now my eyesight was getting blurry and I was having eye pain. I found out my left eye muscle wasn't working properly anymore and, yes indeed, I needed
to get a stronger prescription for my glasses and prisms because the eye muscles were no longer working together.
I finally decided to see my regular family doctor who diagnosed me with ring worm and ran an ELISA test. She had no idea what the deal was with my eye.
Two weeks later the rash nor my eye were getting any better so I went back to the same clinic and saw doctor no#2 who diagnosed me with ring worm and
did a Western Blot test. Since my ELISA test came back negative she said, "if the Western Blot test comes back negative I am 100% positive you do not
have Lyme disease". She had no idea about my eye and dismissed all my other symptoms. The Western Blot test came back negative so I called her back
and asked what the next step was, she directed me to go to a dermatologist.
The dermatologist asked if I had any other symptoms. I named two and he put me on two months worth of doxycycline.
I again called my doctor as my symptoms were all still there and some getting worse. She advised me to see a neurologist. The neurologist ran another
Western Blot test - guess what, negative again. He ordered an MRI and a blood test for myasthenia gravis. By the time I went for a follow up visit I did
have a positive IGeneX test showing positive for Lyme and Babesia. The neurologist dismissed this test saying it was done by some ‘funky’ lab. Both the
MRI and blood tests he did came back normal leaving the neurologist baffled. His only suggestion was to give me an IV drip of steroids and anti-
inflammatory medications for the severe headaches that had now turned into migraines.
The ophthalmologist had no idea about the eye lid drop due to the fact the myasthenia gravis test came back normal. At the beginning of 2007 I had no
eye issues, in June of that year I needed one prism in my glasses and by October I now needed two prisms in my glasses due to convergence disorder.
At this point I can't do simple computations, could hardly do my job at work as I was forgetting how to do regular weekly tasks, severe joint pain like broken
glass, fatigue that was severe (sleeping up to 13 hours a day with no relief from the fatigue), migraine headaches, constant excruciating pressure in my
head, heart pain and muscle weakness.
My hero in the whole saga came in the form of a chiropractor up in Chisago City. She ordered an IGeneX test which finally gave me answers most if not all
of my symptoms. The chiropractor is also helping me with probiotics, vitamins, nutritional counseling, and help to reduce pain and inflammation from two
prior autoimmune diseases. Now came the second task of finding a doctor who would treat the Lyme disease.
The day I received my results from the IGeneX test my daughter called and said she had a positive ELISA test for lyme. That was not a very good day to
say the least. So now my sister, her husband, their dog, my daughter and myself all have tested positive for Lyme disease.
The infectious disease doctor I saw in the St. Paul area refused to accept the IGeneX lab results and dismissed my symptoms. He said I needed to go see
and ophthalmologist, a neurologist, and a dermatologist, when I told him I already had he wanted to know what they said. Each of those doctors wanted me
to see an infectious disease doctor as they all wanted an evaluation for Lyme disease. His only suggestion was sleep medications and said if I get more
sleep most if not all of my symptoms would go away.
By now the left eye lid problem is a daily occurrence, the left eye muscle is working less and less, and the left side of my face went numb and was hanging
like I had bells palsy.
I have since moved onto another infectious disease doctor who did use the IGeneX test results and my symptoms to base his treatment plan on.
I was on antibiotics for five months with quite a few of my symptoms getting better. I hit a plateau so we decided to try and take me off for a few months to
see what would happen. Within a few weeks I got a rash back on my leg, the fatigue was so severe it was interfering with everyday life. My legs became
weak and I started falling on the ground. A new regiment of antibiotics were started at that point for the next 6 months. Thankfully, I regained use of my
legs.
The nerve damage done by the bacteria to my eye and face will probably be permanent at this point. Early treatment is best.