Wednesday, August 26, 2009

Contact your Federal Representatives

Federal legislation is currently pending supporting Lyme and tick borne illness prevention, education, treatment and research. Related bills have died in the federal legislature for the past couple of congresses. This purpose of this legislation is to improve awareness of the diseases transmitted by ticks. Language in the bill supports research for better diagnostic tests for these diseases as well as allowing appropriate treatment for those that suffer from it.

Similar legislation has died in committees in previous sessions of congress. More senators and congressman need to be aware of the effect of tick borne illnesses on our society. They need to be made aware of the problems that these diseases affect that affect school children, that cause previously functional people to become disabled. I have written my representatives in Washington to let them know how important this issue is.

To find our who your representatives are, you can visit this website:

Click on the Legislation link on the green bar across the top of the page. Then click on your state name on the right side of the page. The next page will provide you a place where you can contact your representatives to let them know that you want them to support this legislation.

I firmly believe that the only way to bring awareness to Lyme and other tick borne illnesses is through the public. We need to let our representatives know that this is a real and serious threat to public health.

Tuesday, August 18, 2009

Over the Hump

Doctor J's office is in a neighborhood called Baxter Village in Fort Mill, SC. It is a really cool mix of commercial and residential property. When you enter Baxter Village on Market St. you pass through a couple of blocks of a small downtown type atmosphere. There's a Starbucks with copious patio seating, along with professional offices, art galleries, restaurants and pubs. The next few blocks are residential and similar to row houses that you would see in large American cities. Dr. J's office is in a multi-suite office building about 6 or 7 blocks into the neighborhood. The entire area is sprinkled with common areas, gardens, and parks. The development is relatively new, but it gives you the feeling of an established small town community. It's visually appealing and feels very welcoming.

Lynette's spirits were really down as she finished her last cycle of antibiotics. She felt horrible and full of despair. But as she has started to feel better she is projecting a new sense of fight and optimism and is ready to resume the battle. It's very refreshing.

The results of her visit with Dr. J today did nothing but reinforce those feelings. He performed a few neurological exams on Lynette and was pleased with the results. He was impressed with how far she has come and he proclaimed that he felt she was over the hump. He also had some words of warning though. He described the next two IV drugs that Lynette would be taking as "Game Changers". These drugs he explained, addressed aspects of the illness that had not yet been treated, and that how Lynette responded to these medications was not entirely predictable.

One of these drugs is Levaquin. Lynette had her first dose in Dr. Jemsek's office today. The IV Levaquin is once per day for an hour. Lynette is now infusing Levaquin and Azythromycin. Both are one hour infusions, so she will get one in the morning before I go to work, and the other in the evening after supper. One thing I like about the Levaquin is that there is no mixing. All you have to do is stab the bag with the tubing spike and infuse.

Levaquin's primary target is one of the many co-infections that so often accompany Lyme disease. While Lynette has not had a positive diagnosis for Bartonella, this drug is part of Dr. Jemsek's infusion therapy and most of his IV patients receive it. So many Lyme patients don't improve with treatment because co-infections are not taken into consideration. As with all of the others drugs Levaquin comes with possible side effects, most prominent of which is inflamation of and damage to tendons. Lynette has tolerated all of the IV drugs quite well, and did so this afternoon in Dr. J's office with the Levaquin.

Lynette normally infuses on Monday, Wednesday, and Friday, but since today is Tuesday, Dr. J made up Lynette's schedule this week for Tuesday, Thursday and Saturday. She'll be back on M, W, F next week, and then we will return to his office on September 4th for the first dose of the final IV drug, tigecycline, another game changer according to Dr. J.

Dr. J hired a new infusion nurse named Lisa Baker shortly after Lynette started seeing him. We really like Lisa because she can dish the grief just has hard as I can. We actually have some fun while we are there picking back and forth at each other. We look forward to seeing her. When she saw us this afternoon she said, "Oh, some of my favorite people!"

Lynette is ready to start pursuing physical therapy to strengthen her legs and try and improve the dexterity in her right hand. Dr. Jemsek encouraged her to seek the help of an occupational therapist to help with her hand. He advised Lynette to visit them a few times to learn what kinds of activities would be helpful, and then to continue the therapy on her own at home.

Lauren and Danielle are headed back to college this week. It's been nice to have their help running errands for Lynette and driving her around. It will be a little tougher to get Lynette to physical therapy and lab appointments when they are gone. Anna will also be going back to school next week. I'll have some busy mornings with Lynette's infusions and getting Anna to school on time. Is summer over already?

Friday, August 14, 2009

Watching Your Kids Grow Up

Theraputic antibiotic drugs are prescribed to kill or stop the reproduction of bacteria. There are drugs that are active only on certain types of bugs. But none of them are specific enough to kill just the germ you are after.

Scientific studies suggest that there are just as many bacteria in your digestive system as there are cells in the rest of your body. These bacteria are part of our immune system. They present a hostile environment for other nonbeneficial germs. Infection from one of these bad germs can result in systemic sepsis or yeast overgrowth.

Antibiotics kill bacteria. They kill broad spectrums of bacteria. Some of the bacteria they kill are beneficial to your health. If you kill too many of these good bacteria, you can suffer abdominal symptoms. This can include things like bloating, constipation, diarrhea, nausea, or cramps.

Lynette has been having some of these issues since soon after she starting taking the IV clindamycin. Dr. J has prescribed Lynette an antifungal drug to combat yeast. He has also prescribed her something for nausea. She has been taking lots of probiotics to replace the good bugs that have been killed by the antibiotics. Lynette finished the clindamycin last Friday. We are hoping that stopping this medicine will help with her symptoms.

Lynette's antimicrobial therapy is on a pulsed schedule. She takes all of her antimicrobials morning and night on Monday, Wednesday, and Friday. She follows this regimen for about three weeks and on the last Thursday and Friday of each cycle she takes another antimicrobial called Flagyl (metronidazole). Lyme bacteria can evade the immune system by changing to a cyst form. It does this when environmental conditions are unfavorable, such as in the presence of antibiotics. The Flagyl is also referred to as a cyst buster. I feel like the flagyl is working, because Lynette has some obvious reactions to the drug including depression and just plain feeling lousy.

All of these symptoms are no fun, but I when I think back to some of the other symptoms that Lynette no longer has, they don't seem so severe. I remember when Lynette couldn't walk. And when she was awakened several times per night with violent leg cramps. There was a period of 3 or 4 weeks where Lynette kept her right eye closed to combat the cross eyed/double vision she was suffering from. Her facial numbness is gone. The involuntary twitches in her legs are gone.

Lynette has been spending a lot of time filling out paperwork for her disability claim. She finally relented on waiting for friends and family to fill out paperwork for her. She's getting better at writing with her left hand, although it looks like a kindergartener's hand writing. Of course there are all these questions on the disability application about her symptoms. I just laugh and think to myself, "LOOK AT HER HANDWRITING FOR CRYING OUT LOUD!" Is this the handwriting of a healthy person? She did include dysgraphia (deficiency in the ability to write) as one of her symptoms. Hahaha. That's pretty obvious.

It's obvious that Lynette continues to improve. It is hard for us to recognize immediate improvements though since the actual improvements are miniscule and incremental. I have watched 3 of our children grow from babies to adults, and watched another little girl well on her way to being a woman. They say that kids grow up fast, but it isn't always obvious when you are there all the time. We are experiencing the same thing with Lynette's progress.

A shout out to my in-laws Miles and Beverly Eckard who are celebrating 50 years of marriage this weekend!

Wednesday, August 5, 2009

Summer Camp

For the past 13 years at least one of our children has been in attendance at summer camp at YMCA Camp Hanes in King, NC. Lauren was there first as a 7 year old in 1996. This is Anna's 7th year attending Camp Hanes. In all these years we have never had to send any medication with our campers.

Well, this year is a different story. Anna is currently taking 3 different antibiotics. Dr. Jemsek has also recommended several supplements for Anna to take. The camp requires that all medicines be in their original bottles. We showed up with a large zip lock bag full of pill bottles. Upon registration, we had to visit the medication table and provide them with the medication, as well as instructions for dosing. Behind the table was a bin full of submissions from other campers. I have to say that I am very proud of my daughter, as she had more medicine than anyone that had preceded us. She's the best.

Lynette is on the drip right now. She's enjoying a one hour infusion of Azithromicin. We'll follow that up with a 30 minute dose of Clindamycin. Friday is the last day for her current cycle. We will then have a drug holiday until we return to Fort Mill, SC on August 18. In the meantime we will still be infusing a liter of lactated ringers 3 or so times per week.

I saw Lynette do something tonight that I haven't seen in quite sometime. The details of this event wouldn't mean much to anybody else, but it involved some dexterity and balance that has been absent from her actions for a long time. More signs of continuing improvement.

Lynette has applied for long term disability from her employer. One of the requirements from the insurance company that provides the benefit, is that the applicant apply for Social Security Disability. The application process takes the average person two and a half hours to complete. You have to provide information about all of the doctors you have seen, symptoms you have experienced and medications you have taken. Lynette was amazed at the complexity and severity of her symptoms back in February when she was seeing Dr. Fishman. She has come a long way. She still has a long way to go.

I finally uninstalled the rail for the stairlift this past weekend. That device was such a help for us. We are so lucky that we had the opportunity to use it. I am so glad to see it go.