I got this letter from my good friend Jen. A father speaks from his heart about the remorse he has for doubting his daughter's iillness. But he studies and understands that she is really sick. I have never doubted my wife's symptoms, but I did doubt her self diagnosis of Lyme. I have some empathy for this guy.
Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".
I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can't possibly be this ill and not have something tangible to show for your symptoms.
You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That's the way I approached her illness. It's time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.
I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.
Hey they just can't help the way this disease treats them. It's not their fault.
We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn't need someone who claims to love her causing her any more pain than she has already.
Families. from one who has been in your shoes, please let them know you love them.
Let them know you're there to help them.
Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.
I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad
Monday, February 22, 2010
Friday, February 5, 2010
Introducing: Alinia Funk
During Lynette's last visit with Dr. J he told her that he wanted her to take the anti-parasitic drug Alinia. He explained that the metabolites of the drug were effective only within the digestive system. A purge for your GI track I suppose. While he was talking about this medicine he was also writing prescriptions for Lynette for the Alinia and for Levaquin. It wasn't until we got home that we realized that he'd written Lynette's presciptions in the name of Alinia Funk.
Lynette being the digital maven that she is, scanned in copies of the errant prescriptions and attached them to an email that she sent back to JSC. Dr. J responded at 10:00 pm one night this week suggesting that Lynette's "mama" had named her after one of the most potent anti-parasitic medicines on the market. He said the new scripts would be on the way.
Lynette sent a gift card to Dr. J today and put her name, as the benefactor, as Lynette Alinia Funk.
The new paper prescriptions came today with the corrected name. But the envelope was still prolonging the joke.
Dr. J has a lot going on in his life. I can understand how he can get distracted. But he is still capable of maintaining a wonderful sense of humor. And he's helping a lot of people.
Saturday, January 30, 2010
Our Nation's Capital
We found a nice hotel in the West End section of Georgetown called the River Inn for $130 a night that was about 3 blocks from Dr. Jemsek's office. We booked on Orbitz and I suspect the rate was a seasonal one because I tried a "mock" booking for May and the rate was about $80 higher. There was no on-site parking, and overnight parking was $30. Ouch. Nevertheless the hotel room was very nicely appointed with a Queen size bed, a sleeper sofa and a good sized kitchenette. It was also in the middle of a neighborhood which provided for a little quieter environment. As much as we liked this place, we are considering Arlington for our accommodations next time. There are some hotels across the river in close proximity to Metro stops that would be very convenient and significantly cheaper. The closest Metro stop to Dr. Jemsek's office is at the George Washington University Hospital which is about 4 blocks from his office.
As well as the old Air and Space Museum and the Museum of Natural History.
We had fun on the mall goofing around and taking some pictures. 
We were fascinated by an apparently deranged albino squirrel. The rain held off until it started to get dark. We made our back to the Metro station and then back to the vicinity of our hotel. We wondered around attempting to find some place to eat. We ended up eating at Marshall's Bar and Grill on L St. It was your typical neighborhood Italian restaurant. It was nothing to write home about. Very near the restaurant and Dr. Jemsek's office was a Trader Joe's grocery store. We had never been to one and we ended up going there twice on Sunday night. They have a very interesting business model which focuses local and smaller suppliers. They don't sell much in the way of brand name products and they definitely have a focus on healthier foods.
Dr. Jemsek's office is at 2440 M St. NW in the Georgetown neighborhood. The building has a parking garage under it that is accessible from M St. Parking was $8 per hour. As we ended up being there for nearly 2 hours, the parking tab was $15. Another reason to stay across the river and use the subway.
Anna and Lynette were the first patients of the day at Noon. Due to the transition that has taken place with the move of Dr. Jemsek's office from Fort Mill, SC to Washington, DC the office environment seemed a bit chaotic. We were surprised to see Phyllis at the receptionist's desk, but she explained to us that she was training her replacement and would not be staying in DC permanently. Anne Walch, the PA from Dr. Biddle's office in Asheville, who saw Anna on her first appointment in Fort Mill, was also in the office. While Dr. Jemsek was talking with us in the examination room, he left briefly go get someone to introduce to us. He came right back with his 10 year old son James. James had come to DC with his dad to provide some relief for Dr. Jemsek's wife back in Charlotte. James was busy with some school tutoring while he was at his dad's office.
As usual, Dr. J changed up Anna and Lynette's protocols. Lynette is now on Omnicef, Rifabutin, and Minocin. The Rifabutin will be alternated on a weekly basis with Levaquin. Lynette's new schedule is 2 weeks on and 3 weeks off. Dr. J also prescribed Alinia for Lynette which is an anti-parasitic that is active only in the digestive system, and recommended nattokinase to be taken as a supplment. As I recall, he suggested this substance as an agent to help break down biofilms. Anna will also be on the same medicines, with the exception of Levaquin. Anna will be going to 1 week on and 2 weeks. Anna will not need to return for 6 months. Dr J. said he wanted to see Lynette back sooner.
Dr. Jemsek seemed to be in pretty good spirits. We all know what he is going through with the illnesses of his daughter and wife and the transition of his practice. Whether we imagine it or not, it appears that Dr. Jemsek is a little worn down from all the struggles he is facing. His new staff seemed to be coming along well. The nurse that saw us that day, Karen Campbell, was wonderful and personable. She gave us hugs when we left.
Wednesday, January 13, 2010
Happy New Year
The Holidays are over. Time to rejoice. I always lament the coming of Holiday season because it is too busy. I cannot come to terms with the time obligations invloved in this season. We pack all of the shopping, cooking, eating, giving, visiting into a one month period. It is a pleasure to see those we haven't seen for a year, and fun to give and receive gifts. But I think it would be more enjoyable if we could spread it through out the year. Call me Scrooge.
My father recently celebrated his 73rd birthday. He is incredibly healthy and serves as my home remodeling consultant. I called him for his birthday and he told me about a visit to his house from a neighbor couple. The wife had recently experienced a significant and unexplained weight loss. She had no explanation for it.
My father told her that my wife had suffered a significant weight loss preceded by a Lyme diagnosis. She confessed that she had experienced a recent tick attachment which was followed by a red ring around the bite site.
I am a news junkie. When I was in college, living in campus housing, I had the newspaper delivered to my door daily. I had a class that required me to subscribe to the Christian Science Monitor and I thought that was cool. When I moved off campus I continued to subscribe to Columbia State newspaper. I currently subscribe to the weekly small town newspaper here in Clemmons where we live. I also subscribe to the daily paper from the nearest city, Winston-Salem. If I am sitting at a computer I have probably checked msnbc.com to see what the latest news is. When I am in the car I'm listening to NPR or local talk radio. I have an insatiable curiosity about the world. It is somewhat fulfilled by all of these media sources.
I have known for years that Lyme disease is associated with a bullseye rash and arthritic symptoms. I had no idea about the havoc that this disease could wreak on your immune system and the neuroligcal effects it could have. Before Lynette became ill she had never heard of a bullseye rash. It is so apparent that there needs to be more awareness.
We have our next appointment with Dr. J which will be towards the end of January. My dad's house is on the way, so we look forward to being able to visit with him. We are also hoping to be able to spend a "tourist" day in DC the day before the appointment.
I have made a tradition of making a "mix tape" CD every year and giving it to friends and family for Christmas. This years disc was called Can Ya Dig It. It was a compilation of '70s Soul music. This is the music I grew up listening to in the car with my mom. Artists like The Spinners, Aretha Franklin, The Jackson 5, and Mavin Gaye. My favorite song on this year's CD is Midnight Train to Georgia by Gladys Knight and the Pips. There's a line in the song (gender inaccuracy excused) that describes my life lately. She sings:
"I'd rather be in his world, than be without him in mine."
So I'll be in her world. Lynette didn't have a choice. I did. It's OK.
When the clock strikes midnight on New Year's Eve one tends to look back on the previous year. Generally it has either been a good year or a bad one. For our family 2009 will be remembered for very dark and trying times which will scar our memories for years to come. We look forward to continued progress back to a normal life. This one will be better.
My father recently celebrated his 73rd birthday. He is incredibly healthy and serves as my home remodeling consultant. I called him for his birthday and he told me about a visit to his house from a neighbor couple. The wife had recently experienced a significant and unexplained weight loss. She had no explanation for it.
My father told her that my wife had suffered a significant weight loss preceded by a Lyme diagnosis. She confessed that she had experienced a recent tick attachment which was followed by a red ring around the bite site.
I am a news junkie. When I was in college, living in campus housing, I had the newspaper delivered to my door daily. I had a class that required me to subscribe to the Christian Science Monitor and I thought that was cool. When I moved off campus I continued to subscribe to Columbia State newspaper. I currently subscribe to the weekly small town newspaper here in Clemmons where we live. I also subscribe to the daily paper from the nearest city, Winston-Salem. If I am sitting at a computer I have probably checked msnbc.com to see what the latest news is. When I am in the car I'm listening to NPR or local talk radio. I have an insatiable curiosity about the world. It is somewhat fulfilled by all of these media sources.
I have known for years that Lyme disease is associated with a bullseye rash and arthritic symptoms. I had no idea about the havoc that this disease could wreak on your immune system and the neuroligcal effects it could have. Before Lynette became ill she had never heard of a bullseye rash. It is so apparent that there needs to be more awareness.
We have our next appointment with Dr. J which will be towards the end of January. My dad's house is on the way, so we look forward to being able to visit with him. We are also hoping to be able to spend a "tourist" day in DC the day before the appointment.
I have made a tradition of making a "mix tape" CD every year and giving it to friends and family for Christmas. This years disc was called Can Ya Dig It. It was a compilation of '70s Soul music. This is the music I grew up listening to in the car with my mom. Artists like The Spinners, Aretha Franklin, The Jackson 5, and Mavin Gaye. My favorite song on this year's CD is Midnight Train to Georgia by Gladys Knight and the Pips. There's a line in the song (gender inaccuracy excused) that describes my life lately. She sings:
"I'd rather be in his world, than be without him in mine."
So I'll be in her world. Lynette didn't have a choice. I did. It's OK.
When the clock strikes midnight on New Year's Eve one tends to look back on the previous year. Generally it has either been a good year or a bad one. For our family 2009 will be remembered for very dark and trying times which will scar our memories for years to come. We look forward to continued progress back to a normal life. This one will be better.
Wednesday, December 23, 2009
'Twas the Night Before Drug Holiday
‘Twas the night before drug Holiday, and although Mom was sick.
Not a creature was threatening, not even a tick.
The Children were bedside praying while they kneel.
While their bellies were full from tonight’s Gluten Free meal.
The drugstore had been called, to order more refills.
For some of the prescription bottles had run out of pills.
Mother in her rocking chair, her PICC line running.
‘Twas the end of a cycle, antiobitics she’d be shunning.
When out in the driveway a ruckus was heard.
I looked out the window to see what had occurred.
When what to my wondering eyes should I see
Eight lovely nurses and our LLMD.
He spoke with authority as he commanded his staff.
And out from his mouth came with a jolly laugh.
“Now Ringers! Now Doxy! Now Clinda and Mepron!
On Ceftin! On Tiga! On Zithro and Merrem!”
He was dressed for the occasion as he peered over his glasses
At once he proclaimed his approach to the masses.
“With pulses and holidays and combination therapies
We’ll rid you of these symptoms and serious maladies”
“Supplements next week, no drugs consumed.
If you don’t watch your gluten, your gut will be doomed.
“As for probiotics, they are important too.
To help fight the damage that antibiotics can do.
“We’ll knock out the Lyme, the Babs and the Bart.
Believe in my tactics and take this to heart.
“We’ll have you back walking and clear in the head
Brain fog will be gone and the spirochetes dead.
As he turned to drive off with all of his team,
He looked back at us, his eyes all agleam.
“May recovery be swift and without delay
Here’s to your health, enjoy your drug holiday!
Not a creature was threatening, not even a tick.
The Children were bedside praying while they kneel.
While their bellies were full from tonight’s Gluten Free meal.
The drugstore had been called, to order more refills.
For some of the prescription bottles had run out of pills.
Mother in her rocking chair, her PICC line running.
‘Twas the end of a cycle, antiobitics she’d be shunning.
When out in the driveway a ruckus was heard.
I looked out the window to see what had occurred.
When what to my wondering eyes should I see
Eight lovely nurses and our LLMD.
He spoke with authority as he commanded his staff.
And out from his mouth came with a jolly laugh.
“Now Ringers! Now Doxy! Now Clinda and Mepron!
On Ceftin! On Tiga! On Zithro and Merrem!”
He was dressed for the occasion as he peered over his glasses
At once he proclaimed his approach to the masses.
“With pulses and holidays and combination therapies
We’ll rid you of these symptoms and serious maladies”
“Supplements next week, no drugs consumed.
If you don’t watch your gluten, your gut will be doomed.
“As for probiotics, they are important too.
To help fight the damage that antibiotics can do.
“We’ll knock out the Lyme, the Babs and the Bart.
Believe in my tactics and take this to heart.
“We’ll have you back walking and clear in the head
Brain fog will be gone and the spirochetes dead.
As he turned to drive off with all of his team,
He looked back at us, his eyes all agleam.
“May recovery be swift and without delay
Here’s to your health, enjoy your drug holiday!
Thursday, December 17, 2009
Wonk
Wonk: a person preoccupied with arcane details or procedures in a specialized field;
Lorraine Johnson is a tireless advocate for the Lyme community. She has both law and MBA degrees. Her writings on the issues of medicine and its ethical and legal aspects are prolific. Lorraine currently serves as the executive director of the California Lyme Disease Assn., as a member of the Board of Directors of International and Lyme Associated Diseases Society (ILADS), and as a member of the advisory board of the national Lyme Disease Association.
Lorraine maintains a great blog that presents logical arguments against the ways of the IDSA and the uneducated medical community. The things she writes just make so much sense.
http://www.lymedisease.org/news/lymepolicywonk
A recent post compared the struggles of breast cancer sufferers 30 or 40 years ago to Lyme disease patients today. Breast cancer was stigmatized and not talked about. Women had to pass legislation in several states to be able to choose their course of treatment. Drs. were afraid to perform lumpectomies for fear of losing their licenses.
http://www.lymedisease.org/news/lymepolicywonk/284.html
Lynette had a fun time with Flagyl last weekend. This is the drug that she takes morning and night the last 2 days of each antibiotic cycle. It targets the borrelia that have transformed themselves into a cyst form. This state of borrelia is not susceptible to standard antibiotics.
Lynette has been taking this drug as long as she has been under the care of Dr. J. A day or two after she takes Flagyl, she sometimes experiences episodes of depression that last for a day or two. Other times she has felt no ill effects. She took it at the end of last week. Sunday and Monday she had PMS and it wasn't even close to that time of the month. Then it was over.
Anna's volley ball team won the conference championship and now it's on to basketball. Anna is in 7th grade and she is playing on the junior varsity team. Since her school's enrollment stops at 8th grade this makes her one of the leaders on her team. She has shown major improvement in her skills over last year. But most importantly, Anna is reporting that the pain in her ankles and feet has lessened. We've noticed that she's had less headaches and she hasn't complained about her sleep patterns lately. It sounds like Anna's treatment is working well. She should never have to experience what Lynette went through.
Lorraine Johnson is a tireless advocate for the Lyme community. She has both law and MBA degrees. Her writings on the issues of medicine and its ethical and legal aspects are prolific. Lorraine currently serves as the executive director of the California Lyme Disease Assn., as a member of the Board of Directors of International and Lyme Associated Diseases Society (ILADS), and as a member of the advisory board of the national Lyme Disease Association.
Lorraine maintains a great blog that presents logical arguments against the ways of the IDSA and the uneducated medical community. The things she writes just make so much sense.
http://www.lymedisease.org/news/lymepolicywonk
A recent post compared the struggles of breast cancer sufferers 30 or 40 years ago to Lyme disease patients today. Breast cancer was stigmatized and not talked about. Women had to pass legislation in several states to be able to choose their course of treatment. Drs. were afraid to perform lumpectomies for fear of losing their licenses.
http://www.lymedisease.org/news/lymepolicywonk/284.html
Lynette had a fun time with Flagyl last weekend. This is the drug that she takes morning and night the last 2 days of each antibiotic cycle. It targets the borrelia that have transformed themselves into a cyst form. This state of borrelia is not susceptible to standard antibiotics.
Lynette has been taking this drug as long as she has been under the care of Dr. J. A day or two after she takes Flagyl, she sometimes experiences episodes of depression that last for a day or two. Other times she has felt no ill effects. She took it at the end of last week. Sunday and Monday she had PMS and it wasn't even close to that time of the month. Then it was over.
Anna's volley ball team won the conference championship and now it's on to basketball. Anna is in 7th grade and she is playing on the junior varsity team. Since her school's enrollment stops at 8th grade this makes her one of the leaders on her team. She has shown major improvement in her skills over last year. But most importantly, Anna is reporting that the pain in her ankles and feet has lessened. We've noticed that she's had less headaches and she hasn't complained about her sleep patterns lately. It sounds like Anna's treatment is working well. She should never have to experience what Lynette went through.
Monday, December 7, 2009
Don't Be Late
Lynette's tardiness has always been an annoyance to me. She thinks that she would be wasting the amount of time between when she arrived and when she was supposed to be there. I think it's an inconvenience to every one of the the people that she is meeting when she is late.
She got this message from a fortune cookie one night:
"People who are late are often happier than those who have to wait for them."
When Lynette was really sick she was the one who had the best of attitudes while the rest of us fretted about her condition. I guess we were waiting for Lynette and she was handling it better than the rest of us.
Lynette returned to work today. She will be working 25 hours a week for the next month or two. Her pod was decorated with lyme green streamers. There were other decorations and treats to celebrate her return.
Lynette is not cured yet, but she is a long way towards recovery. She still has balance and strength issues. The numbness in her hand and feet persists. She notices some affects from the oral antibiotics that she's on. But she has come a long way.
Even if she's late.
She got this message from a fortune cookie one night:
"People who are late are often happier than those who have to wait for them."
When Lynette was really sick she was the one who had the best of attitudes while the rest of us fretted about her condition. I guess we were waiting for Lynette and she was handling it better than the rest of us.
Lynette returned to work today. She will be working 25 hours a week for the next month or two. Her pod was decorated with lyme green streamers. There were other decorations and treats to celebrate her return.
Lynette is not cured yet, but she is a long way towards recovery. She still has balance and strength issues. The numbness in her hand and feet persists. She notices some affects from the oral antibiotics that she's on. But she has come a long way.
Even if she's late.
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