Our Nation's Capital

We left Clemmons last Friday night headed towards my dad's house in Richmond, VA.  It was nice to spend the day with my dad and his wife Margie.  Sunday morning we headed for Washington, DC which was about a 2 hour drive. 

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.

After checking into the hotel Anna, Lynette and I struck out towards the Metro station on our way to the Mall.  We visited the Smithsonian castle

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.  

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.

'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!

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.

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.

Thanks for...

Thanks for continued improvement in my wife's health.

Thanks for making me cook all day today.  I had so much fun.

Thanks for the people who helped clean up my mess.

Thanks for our kids, parents and siblings being able to join us for dinner today.
 
Thanks for people who fight for the truth even when biased and uneducated people tell them they are wrong.
 
Thanks for doctors who are willing to put their reputation on the line to treat patients who have nowhere else to go.
 
 
 

Gluten Tuesday

On the very first day that we saw Dr. J, my wonderful mother-in-law Beverly was extoling the virtues of my culinary prowess to Dr. J.  She was describing some random pizza that I had made while she was staying with us and helping Lynette.  Dr. J immediately interjected with his warnings about gluten in the diet.  That was the beginning of Lynette's gluten restricted diet.

It's been over 6 months now.  We have not seen any harm or help from restricting Lynette's gluten intake.  At first she ate no gluten.  Then once in a while she would have something with a slight amount of gluten, like gravy thickened with wheat flour.  Then over the course of a week would have something like breaded seafood once.

We have family standards that we like to eat that contain gluten. The gluten does not seem to be causing any issues for  Lynette, so I have recently implemented Gluten Tuesday.  Two weeks ago we had quesadillas.  Last week we had muffalettas.  This Tuesday it was home grilled hamburgers. 

Of course we aren't going to go overboard, but I see no harm in a little gluten if it is not causing Lynette any issues.