My father drove down from Richmond last year around Valentine’s Day. He came to help me install the chairlift so that Lynette could get up and down the stairs. At that time Lynette could hardly walk on level floor with a walker. It was great to have his support and help. Lynette’s first appointment with Dr. Fishman was the Monday after that weekend.
My father recently made a return visit. I took Thursday and Friday off last week and we built a storage room under our screen porch. This time dad saw a different Lynette. On Saturday she and Anna got up early in the morning to head off to a softball tournament. They made it back in the afternoon only to turn around and head off to a concert. On Sunday Lynette and Anna took off to Boonville to our niece’s wedding shower. My dad was amazed and happy to see how much Lynette has progressed.
Lynette and Anna are in Washington DC right now on a school field trip. Lynette managed to arrange an appointment with Dr. Jemsek while she is up there. She had to fight the unfamiliarity of the subway. I looked at Google maps and street view images and the Metro map and did my best to give her accurate instructions ahead of time. But things never work out exactly as you plan. Lynette still managed to catch up with the kids after her appointment.
Lynette had a lot of questions for Dr. J and he made some tweaks to her therapy. Tomorrow is the anniversary of Lynette's first visit to Dr. J.
It's also our 16th wedding anniversary.
Thursday, April 29, 2010
Thursday, April 8, 2010
Still Rising
There was good news in the scientific Lyme community today. Connecticut physician Sin Hang Lee along with his colleagues at Milford Hospital have developed the first highly specific and sensitive DNA test for early infection with the Lyme disease bacteria. Traditional Lyme disease tests check for your body's response to the infection. In most patients these antibodies are not present in large concentrations in early infection. This results in many false negative serological Lyme tests. The new test detects the bacteria in the bloodstream in early infection before it has a chance to migrate to the body's organs and away from the bloodstream. Early detection is important. It's the most opportune time to treat the infection effectively.
In another Lyme related development, scientists at the US Centers for Disease Control and Prevention have found a gene in the Lyme bacteria that when deactivated, blocks its ability to infect it's host. This clue about the inner workings of the bacteria opens the door to new vaccine techniques.
We had the great opportunity over Easter weekend to borrow Lynette's folk's RV. We drove it down to Myrtle Beach for a 4 day weekend. The weather was beautiful and we had a fantastic time. Things were a lot different for us last Easter. Lynette was still having trouble walking on her own. It was great to see Lynette doing what she wanted to do, without being encumbered by her health. She spent most of the weekend doing her favorite thing. Spending time with her daughters.
A year ago around Easter time I compared Lynette's recovery to the resurrection of Christ. She continues to amaze me. She is still rising.
In another Lyme related development, scientists at the US Centers for Disease Control and Prevention have found a gene in the Lyme bacteria that when deactivated, blocks its ability to infect it's host. This clue about the inner workings of the bacteria opens the door to new vaccine techniques.
We had the great opportunity over Easter weekend to borrow Lynette's folk's RV. We drove it down to Myrtle Beach for a 4 day weekend. The weather was beautiful and we had a fantastic time. Things were a lot different for us last Easter. Lynette was still having trouble walking on her own. It was great to see Lynette doing what she wanted to do, without being encumbered by her health. She spent most of the weekend doing her favorite thing. Spending time with her daughters.
A year ago around Easter time I compared Lynette's recovery to the resurrection of Christ. She continues to amaze me. She is still rising.
Thursday, March 18, 2010
There's No Lyme Disease in North Carolina
Dave Tierney is a commercial airline pilot and former marine. In 2007 Dave was diagnosed with Multiple Sclerosis and lost his flying privileges. He went through the traditional MS treatments and his health deteriorated. Dave suspected Lyme disease and made an appointment with Dr. J. Dave was treated with IV antibiotics followed by oral antibiotics. Dave returned to the cockpit about 13 months after his Lyme diagnosis.
Dave lives here in North Carolina where we do. He has become a tireless advocate for Lyme disease sufferers in our state. Dave sent emails out to all of the Lyme interested people that he could find. From that Dave is able to update many of us on matters related to Lyme in North Carolina. Dave has reported back on trips he's made to Raleigh to meet with state officials and participate in hearings and other forums involving Lyme.
Today Dave sent an email letting us know that North Carolina now has a county designated as Lyme endemic. Two cases of Lyme disease in Wake county have been confirmed in individuals with no recent or relavent travel history. This meets the CDC's criteria for endemnicity. Here's a link that Dave sent to an article on a local website.
As I've stated many times before, some of Lynette's worst symptoms are the neuropathy in her hands and feet. Her left hand is the least affected. The nerve damage in her hand has affected her motor nerves as well as her sensory nerves. The numbess doesn't seem to be as impeding as the motor problems do. If I ask her to hold her hand level with her fingers together and then spread them open they go in all directions. You should see her trying to put on her jewelry in the morning. Those tiny clasps are good hand therapy.
The numbness and lack of motor control exists in Lynette's feet and legs as well. But let's face it, you don't have to hook a necklace clasp with your toes. But it does affects ability to walk. Lynette has never been a flat shoe kind of girl but she's been wearing nothing but flat shoes since she left the walker behind. A week or two ago she bought a low wedge sandal that she thought she would be able to walk in. Well they seemed to work out ok and today she was in one of her old higherish shoes. She looked good.
Dave lives here in North Carolina where we do. He has become a tireless advocate for Lyme disease sufferers in our state. Dave sent emails out to all of the Lyme interested people that he could find. From that Dave is able to update many of us on matters related to Lyme in North Carolina. Dave has reported back on trips he's made to Raleigh to meet with state officials and participate in hearings and other forums involving Lyme.
Today Dave sent an email letting us know that North Carolina now has a county designated as Lyme endemic. Two cases of Lyme disease in Wake county have been confirmed in individuals with no recent or relavent travel history. This meets the CDC's criteria for endemnicity. Here's a link that Dave sent to an article on a local website.
As I've stated many times before, some of Lynette's worst symptoms are the neuropathy in her hands and feet. Her left hand is the least affected. The nerve damage in her hand has affected her motor nerves as well as her sensory nerves. The numbess doesn't seem to be as impeding as the motor problems do. If I ask her to hold her hand level with her fingers together and then spread them open they go in all directions. You should see her trying to put on her jewelry in the morning. Those tiny clasps are good hand therapy.
The numbness and lack of motor control exists in Lynette's feet and legs as well. But let's face it, you don't have to hook a necklace clasp with your toes. But it does affects ability to walk. Lynette has never been a flat shoe kind of girl but she's been wearing nothing but flat shoes since she left the walker behind. A week or two ago she bought a low wedge sandal that she thought she would be able to walk in. Well they seemed to work out ok and today she was in one of her old higherish shoes. She looked good.
Tuesday, March 9, 2010
One Year Later
Someone called me from Acorn Stair Lifts today. They said it was a courtesy call for people who had shown interest in their products in the past. We were fortunate enough to have a friend let us borrow an Acorn Stair Lift when Lynette was having so much trouble getting up and down the stairs. My mother-in-law Beverly is a real estate agent. She had a client who was moving one of his parents to a retirement community. The house that was being sold had a stair lift and the client offered it to my mother-in-law after Beverly told him about Lynette. We installed the chairlift in our house on 2/15/09.
The stair lift is a chair with a motor and rechargeable battery. It rides on a rail that is fastened to the treads of your stairs. The chair rides up and down the rail using a gear system. The battery recharges when the chair is at the top or bottom of the rail.
The rail that came with our stair lift was one step too short for our stairs. We managed the extra stair and the stair lift was an amazing assistant when we most needed it. I recall contacting Acorn, perhaps to inquire about a longer rail. When they called today the man on the phone seemed somewhat surprised that we no longer needed their product. I was happy to tell him the person who had used their product had an experienced improved health and no longer required the stair lift.
Lynette walked on the walking trail at work yesterday. It's a moderate 1.6 miles but she said it's the longest walk she has taken since she was sick. She is still struggling with neuro problems in her hands and feet.
Anna has a school field trip to Washington, DC in April. Lynette volunteered to be one of the chaperones. Lynette will be able to get a visit in with Dr. J while she is up there. This will save us plenty of time and money by not having to make a trip up there. Lynette's worried she is going to get lost going from the kids current field trip venue to Dr. J's office and back the kids new current field trip venue after the appointment. I'll have to make her up customized instructions with rail line colors, rail line changes, and Google street view pictures to keep her from getting lost.
The rail that came with our stair lift was one step too short for our stairs. We managed the extra stair and the stair lift was an amazing assistant when we most needed it. I recall contacting Acorn, perhaps to inquire about a longer rail. When they called today the man on the phone seemed somewhat surprised that we no longer needed their product. I was happy to tell him the person who had used their product had an experienced improved health and no longer required the stair lift.
Lynette walked on the walking trail at work yesterday. It's a moderate 1.6 miles but she said it's the longest walk she has taken since she was sick. She is still struggling with neuro problems in her hands and feet.
Anna has a school field trip to Washington, DC in April. Lynette volunteered to be one of the chaperones. Lynette will be able to get a visit in with Dr. J while she is up there. This will save us plenty of time and money by not having to make a trip up there. Lynette's worried she is going to get lost going from the kids current field trip venue to Dr. J's office and back the kids new current field trip venue after the appointment. I'll have to make her up customized instructions with rail line colors, rail line changes, and Google street view pictures to keep her from getting lost.
Monday, February 22, 2010
Letter From Lyme Dad
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
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
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.
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