Monday, June 29, 2009

Ground Zero

Arrive at the clinic
walk through the front door
take a nervous number
then I think about it more
about all the time
that I neglected
makin sure that
I was protected

But how'm I gonna live my life
if I'm positive?
Is it gonna be a negative?

Michael Franti & Spearhead -- Positive

These are lyrics are from a song where the narrator laments hearing the results of his AIDS test. He wants to be a responsible mate, but hasn't always been responsible in the past. Ultimately he fears he may be infected with a horrible disease.

The number of new AIDS cases in the United States been slowly dropping this decade as you can see in the table above. For the last year referenced in the table, there were just under 37,000 new cases. 25 years ago an HIV/AIDS diagnosis was a certain death sentence. At first the disease was dismissed as a gay man's disease and the stigma connected to AIDS resulted in a reluctance of doctors and researchers to give it the attention it needed. Once there was more awareness about AIDS, people started advocating for research about how the disease behaves and the best way to treat it. Great strides were made in treatments and today those infected with HIV/AIDS can lead a fairly normal and long life.

In early 1983 Dr. Joseph Jemsek quite likely diagnosed the first case of HIV/AIDS in the Carolinas when he was requested to provide an infectious disease consultation on a young male dying with atypical pneumonia at Mercy Hospital in Charlotte. Subsequently he personally provided care for over 2000 individuals with HIV/AIDS through early 2006 ... naturally almost all individuals with this disease passed away until life prolonging changes in therapy became available in 1996. This experience with the medical and social aspects of this epidemic have profoundly impacted his view of medicine in current times. *

In over 20 years of work in the field of HIV/AIDS, Dr. Jemsek participated in many pharmaceutical-sponsored trials for HIV medications, including some of the earliest clinical trials on record. In his career, he and his staff have participated in over 100 clinical research studies for HIV/AIDS treatment, of which 22 became established protocols, In these and other academic pursuits in the area of Infectious Diseases, he has generated over 40 peer reviewed publications. *

It was the compassion that Dr. Jemsek showed towards his AIDS patients that resulted in an influx of patients suffering from a new disease. Lyme patients had heard of this doctor's willingness to listen to his patients. And so Doctor Jemsek started treating these patients for this increasingly common disease. Dr. Jemsek's research and practice in the area of Lyme disease has resulted in him being one of the world's foremost experts in the diagnosis and treatment of Lyme and associated infections.

The CDC reported over 27,000 new cases of Lyme disease in 2007. They admit that the disease is likely underreported by a factor of 10. This means that there are nearly 90% more new cases of Lyme disease per year than AIDS. Where are the studies and research that this disease deserves?

Some of the symptoms of Lyme disease include fatigue, insomnia, headache, depression, numbness in tingling in the limbs, ADHD, cardiac irregularities, hearing loss, unexplained fever or low body temperature, loss of appetite, rashes and joint pain.

I have visited or lived in every Lyme disease endemic region in this country. I visited the north coast of California as a child. I lived in west central Wisconsin for 4 years where I had a tick attachment. I visited the New England area several times as an adult.

At least one of the symptoms that I have listed above has been experienced by myself, my former and current wives, as well as the two children that I have fathered. Could it be that I have harbored this disease for a large part of my life and passed it on to my wives, who then passed it on to our children? Could I be ground zero for this introducing this infection to my family?

* Disclosure: the first two paragraphs about Dr. Jemsek's history and practice are taken from the Jemsek Specialty Clinic website.

Sunday, June 28, 2009

Drip, Drip, Drip

On Tuesday we went back to Jemsek Specialty Clinic(JSC). The purpose do the trip was 3 fold. My task was to change Lynette's PICC line dressing. She was due to try out a new antibiotic called clindamycin. And thirdly Anna had an appointment to see Dr. Jemsek.

The PICC line dressing change was stressful for me since I'd never done it before. I had to be extremely cautious about sterile technique. The two nurses that supervised me were very helpful and encouraging. It went fairly well. Since the dressing needs to be changed once a week, this coming Tuesday I get to go it alone.

Lynette did fine with the new medicine and she is now infusing meropenem and clindamycin twice a day on Monday, Wednesday, and Friday. The whole process is settling down now and becoming somewhat routine. We have placed hooks in strategic places on walls in our home to hold IV bags. We have purchased a rolling storage container with drawers to put all the various supplies in. We are buying socks and cutting them into tubes to cover up the PICC line site.

The infusion process starts with a saline flush. After sterilizing the end of the PICC line with an alcohol prep, a small syringe of saline is screwed onto the PICC line and slowly emptied into the line. Each of the antibiotics comes with a 100ml bag of saline and a small bottle of medicine. The meropenem is powdered and needs to be mixed prior to administration. The clindamycin comes the same way but it is liquid so there is one less step.

Both medicines have rather ingenious ways of attaching the medicine to the IV bag to prepare and dilute it, and to keep it sterile. Once the drugs are mixed the IV bag is spiked with the end of a tubing set up. After purging all the air out of the tubing line it then gets hooked up to the PICC line. At 1 drip per second the medicine is administered over a 30 minute period. That is followed by another saline flush, the next medicine, and then another saline flush. Finally the line is flushed with a small syringe of Heparin which is an anti-coagulant.

On days when Lynette does not receive the antibiotics, she still gets a saline flush followed by a heparin flush. Also on her days off she can choose to infuse a liter bag of lactated ringers(LR). As I said in a previous post, we did not know at what rate to administer the LR. We found out at JSC that we should run it wide open. Lynette did a bag in about 75 minutes yesterday. She said she felt like it gave her a little boost in energy.

Dr. Jemsek will also start Lynette on a couple of new medicines in the next two weeks. They are both intended to target the babesia infection. The first drug is called Mepron. It is a thick, vibrant yellow liquid. The bottle of Mepron is a 10 days supply. The cost to the insurance company for this drug is $920. I had heard that it was expensive, but I was still surprised when I found out how much it actually was. Fortunately our insurance benefit maxes out at $100 out of pocket per prescription. Whew!

The other medicine that Lynette will be taking is Artemisinin. This is an herbal remedy shown to have beneficial effects against the babesia infection. It does not require a prescription, but it does have to be ordered on line. We have been placing orders with Moss Nutrition and VitaCost about every other week for supplements. Last night we ordered from both!

JSC set us up with enough IV supplies to last us for the next few of weeks. We left JSC with 3 boxes of supplies. It required a hand truck for me to load everything into the car in one trip. We also left with a receipt for a $6200 charge. Lynette will be on a drug holiday when we go on our annual family beach trip. She will return to JSC the Wednesday following our trip, so she will get a 12 day break from all prescribed medicines.

Anna expressed some apprehension about seeing Dr. Jemsek. She said she thought he was scary. There is no doubt that he is intense. I find his level of knowledge somewhat intimidating. He started off the appointment by telling a funny story about his 4 year old son and his mother in-law. We all had a good laugh and I think Anna felt better after that. Anna's regimen is not changing much. Dr. Jemsek suggested a couple more supplements for Anna. His greatest concern seemed to be that she get enough sleep. She has had problems falling asleep, staying asleep, and going back to sleep when she wakes up. Dr. Jemsek gave us a drug schedule for Anna that will continue her treatment through the next 12 weeks. She doesn't have to return until that time.

Sunday, June 21, 2009

It's Unanimous

Lynette's been sitting on the couch for the last 4 hours infusing a liter of lactated ringers. This stuff is supposed to be a good flush for all the crap in her system that is being killed off by the antibiotics. Angie at Jemsek Specialty Clinic told us to use it on an "as needed" basis. Unfortunately they never told us what rate to administer it at. We're taking it nice and easy. Lynette is catching up on her DVR inventory.

The Governor of Connecticut has signed into law a bill that provides protection for doctors who treat Lyme disease. It allows for a Lyme disease diagnosis based on clinical findings with or without positive serology. It also includes language supporting the existence of chronic Lyme disease. The bill protects doctors from medical board scrutiny solely on the basis of their prescribing long term antibiotic therapy. Of course the bill still does not protect doctors who provide substandard care.

Here's a press release from the Lyme Disease Association about the new law:

The fact that the bill was passed unanimously by both chambers of the Connecticut state legislature is extremely encouraging. Even so there were some questions whether Governor Rell would sign the bill or not. But this looks like the first time that the we have had significant legislation that tells the cronies at the Infectious Disease Society of America that they are not in tune with what is going on with this disease.

The town of Old Lyme Connecticut is where Lyme disease was first identified. In 1975 local resident and mother Polly Murray called the CDC to report that 12 children in their community, her own included, had been diagnosed with juvenile rheumatoid arthritis. 4 of these children lived on the same street. The cause of the illness was found to be Borrelia burgdorferi, the causative agent in Lyme disease.

Even though Connecticut is ground zero for Lyme disease, residents have been faced with the same stonewall tactics from physicians and insurance companies that people in other states see. Hopefully enactment of this legislation is the beginning of a movement to improve recognition and treatment options nationwide. I have no illusions that these changes are going to be of avalanche proportions. The pace of change will be more like the spread of infected ticks to areas that aren't used to seeing them. It will take some time for states like North Carolina, where Lyme disease is not as common, to adopt similar policies.

I have recently found a couple of blogs similar to this one. I haven't had much time to browse them. They are both similar stories to what you read here and what I see from other Lyme patients on the Internet. Both of these blogs are updated by ladies who suffer from the illness. You can check them out here:

Wednesday, June 17, 2009

Phase II: Sometimes you gotta be piccy

Lynette has entered the next stage of her treatment. Beverly, Lynette, Anna and myself started the day with a trip to Lake Norman Regional Medical Center in Mooresville, NC. Standard outpatient experience. Not that different from getting an MRI. Sit in a waiting room. Answer some questions. Walk through a maze of hallways. Sit in another waiting room. A smiling person in scrubs comes through the door and whisks you away. 20 minutes later, back with a a pink bandage on your arm, smile on your face, and a sucker in your mouth. And then you're ready to go.

To refresh your memory PICC stands for Peripherally Inserted Central Catheter. A tube is inserted into the inside of your upper arm and threaded through a vein until it reaches the heart. The location of the end of the tube is verified using ultrasound.

From there we drove down to Fort Mill, SC to Jemsek Specialty Clinic(JSC). Anna came with us so that she could meet my sister Shannon at JSC and head to Lexington, SC for a week and hang out with cousin Madeleine.

Inside the doctors office, the nurse Angie trained us on changing the dressing on the picc line and administering the antibiotics. Obviously there is a major emphasis keeping things sterile. Angie changed the dressing while explaining what she was doing. This was the part where sterilization was so critical since the entry point is exposed. It did not look like an easy task. Lots of adhesive patches and latex gloves and the normal battles that ensue between them. The site was cleaned with a sterilizer. Next a clamp on the back of an adhesive patch was affixed to Lynette's arm to hold the line in place. Then a foam donut was placed around the line at the entry point. Then another adhesive patch with a large non-adhesive bubble in the center was placed over everything that had been put in place thus far. Finally the patch was sealed down on the edges with additional adhesive.

I got to practice putting on sterile gloves. It was much harder than I ever would have imagined. It's very easy to contaminate your gloves if you aren't used to it. I think Angie barked at me a bout 3 times before she gave up. Part of my trouble was that the gloves were mediums. Having some gloves that actually fit will definitely work to my advantage.

Shannon will bring Anna back to JSC on Tuesday. Anna has her appointment that day. JSC was more than willing to find some time in their schedule to see Lynette again on Tuesday. It will then be my turn to change Lynette's dressing under Angie's watchful eye. It should be interesting. The dressing needs to be changed weekly so I'll need to prove my meddle.

Next Angie explained the infusion process to us. Beverly was there so that she could be my backup if we need her. There were lengths of tubing and stacks of alcohol swabs, connectors to be sterilized, caps to be unscrewed, lines to be flushed, stabbing of bags, mixing and milking, clamping, attaching and unclamping lines. Angie's point was to tell us what to do but not actually do it herself. She had me do the infusion. The biggest problem I had with this was remembering that the tube was connected to Lynette. The actual administration of the medicine took about 30 minutes. The actual infusion of the antibiotics was preceded by a saline flush and followed with a saline flush and a flush with heparin, an anti-coagulant.

This infusion procedure will take a few rounds to get used to it, but it will become easier with repetition. It was hard enough for me to hold something in each hand while one of these objects needed to be uncapped followed by pressing these two ends together and screwing them tight. Lynette does not have enough dexterity in her right hand to be able to do this herself. She will get infusions in the morning and evening on Mondays, Wednesdays and Fridays.

Dr. Jemsek will give her a week off every few weeks. This will be based on her response to the the medication. Angie and Dr. Jemsek both warned about likely Jarisch-Herxheimer reactions. This is the body's reaction to bacterial toxins that are released as the medicine kills the Lyme and other pathogens. Angie and Dr. J both warned some of Lynette's symptoms would return. We are hoping that it's not too severe. We told him that we would be going on a family vacation to the beach in July and he said he could probably schedule that week as a drug holiday. Angie told us that over the expected 5 months of antibiotic therapy Lynette would likely receive 5 different antibiotics in a phased and sometimes overlapping fashion. Dr. Jemsek compared it to multiple agent chemotherapy treatment. In an interview he quoted one of his patients as saying, "You're doing a dance with this disease, aren't you?"

While we were in the waiting room at JSC a cute and bubbly girl about 15 came in. She too had a picc line in her arm. She took one look at Lynette and said, "HEY BUDDY!" I explained that Lynette had just gotten her picc line and hour or so ago and she responded with "CONGRATULATIONS!" She told Lynette about buying leggings at Target and cutting off the cuff so that she could slip them onto her arm and cover her picc line. She had on a striped one that coordinated well with her outfit. She was very refreshing and quite entertaining.

I can't imagine having this thing hanging out of my arm for 5 months. Lynette is quite willing to make the sacrifice in order to reap the rewards. She continues to have best attitude about all this. She's pretty amazing.

Here's a link to an interview that Dr. Jemsek did. It is long but it is amazing how he approaches treatment of Lyme sufferers. There are many doctors who could learn so much from him.

Monday, June 8, 2009

Cookie Cutters

Borreliosis by itself is an extremely complex disease. Lynette is reading a book written by a science journalist named Pamela Weintraub. Pam has been on the staff of several respected science periodicals. Her entire family has suffered from Lyme disease, her husband, her two sons and herself. Their battle against this disease is chronicled in her book, intertwined with all of the science, politics, and controversy that accompany Lyme disease.

Pam's book is called Cure Unkown -- Inside the Lyme Epedemic. Tonight Lynette was reading in the book about one of the most renowned Lyme disease specialist's own battle with the disease. This man took antibiotics for 26 months. He stopped and the symptoms came back. He repeated with another multi-month course of antibiotics until he was feeling better. He stopped the drugs and the symptoms came back. It wasn't until the 3rd long term course of antibiotics that his symptoms were cured.

The symptoms experienced by Lyme sufferers vary widely. The blend of symptoms is as distinct as the combination of winning numbers on a lottery ticket. There are some symptoms that are more common than others. But that doesn't mean that everybody will have them. Many Lyme sufferers have horrible pain, light or sound sensitivity, insomnia, fatigue, or cognitive dysfunction. Some have panic attacks, arthritis, seizures, or cardiac irregularities.

The Infectious Disease Society of America's (IDSA) guidelines on the treatment of Lyme disease dictate that 10 to 28 days of antibiotic therapy will cure all cases of Lyme disease. Anything that this course of treatment does not cure is not Lyme disease.

Reading about all the issues that Lymefriends members have suffered through is interesting. There are many folks on very harsh prescription regimens. Others talk of natural herbs and supplements that have shown to help them. Folks who have improved because of treatment with a particular therapy want to share their success, with the confidence that their cure is a panacea for all Lyme sufferers. Unfortunately there is nothing that works for everybody.

Perry Fields is an elite athlete. She was on her way to being an Olympic runner when she was stricken with Lyme disease. Perry is now symptom free and has been so for more than a year. She found a treatment and therapy protocol that cured her. I am so happy for her that she was able to find something to eradicate this disease when many others haven't.

Perry is currently writing a book on her Lyme disease experience. Lynette and I subscribe to her mailing list and receive emails about 2 or 3 times per month. In her emails she makes vague statements about lifestyle changes and medical practices that will make you better. She seems adamant that these few things are the cure for all Lyme patients.

Perry is back running and has posted some of the fastest times of her career. She is so lucky to have gotten well, but she has yet to openly share with others what has made her better. I'm sure her book will have all of the information about her cure. But you will have to pay to find out what it is. This reminds me of another group associated with Lyme disease who is trying to profit from the disease.

You Look Good

Lynette and I went to a party at John and Gail's house on Saturday. Gail and John were the ones who were so gracious to put us up in February when our power was out at the same time that most of Lynette's power was out too.

For most of the folks at the party, it had been at least a month since they'd seen Lynette. Of course they all commented how good show looked. The complements and attention from everyone were nice. Unfortunately she doesn't feel as well as she looks.

This is a common complaint from many people that suffer from chronic illness. All of the Lymies on understand and empathize. Here are some responses that one of the Lymefriends members came up with. Some of them are actually kind of funny:

I wish I felt as good as I looked.

Looks can be deceiving.

I'm sure someday my inside will catch up to my outside.

My face still hasn't heard that my body is trashed.

If only a shower/ could make me look as good on the inside.

I guess God decided he should at least leave me with SOMETHING that still works.

At least the only part that still works is the part that shows.

When they said "It's better to look good then to feel good" they were talking about Lyme Disease.

I'm bound and determined that my face will be the last to fall.

Gosh, you can fool anyone with those new makeup products they have out now.

Thank you for saying that, but believe me I'd trade it all in a heartbeat if I could FEEL good.

Too bad you can't judge a book by it's cover.

That's Lyme Disease for you....I can feel like death but no one can tell!

Funny, I often hear that same phrase at funerals about the deceased.

Next time I'll have to leave the makeup behind and show up in my pj's so people realize how sick I really am.

Wednesday, June 3, 2009

You know you're a Lymie when..

I found a social networking site for people whose lives have been impacted by Lyme disease. Lynette and I are both members now. In just a few months has gathered up a membership of over 600 people. There is an amazing amount of first hand information available through this network. These people all know the difference between Dr. J in CT and Dr. J in SC. They also have first hand experience with all of the co-infections, diagnostic testing, treatment and complications of Lyme disease. Lynette has befriended a couple of Lymefriends members who's situation is similar to hers.

Some parts of Lymefriends are rather heavy and serious, but there is plenty of hope, stories of recovery and humor as well. One discussion thread that was recently started was, "You know you're a Lymie when...". Of course there were many posts that only a Lymie would get. This was my contribution to the fray:

You know you're a Lymie when...

You need to call the pharmacy to refill prescriptions and you have their phone number memorized.

Lynette got the full 7 page report from her visit with Dr. J in the mail today. I haven't had a chance to look at it. She read some if it over the phone to me. I think we will have to do a lot of Google searches to figure out what it is trying to say. It's full of so many technical medical terms and medical abbreviations.

Lynette is now scheduled to get her PICC line two weeks from today. PICC stands for Peripherally Inserted Central Catheter. What this amounts to is an IV in your arm with a tube long enough to reach your heart. This is the most effective way to deliver medicine to the whole body. When you swallow a pill, it is introduced to a very nasty acidic environment. Oral medications have to be formulated to deal with the harsh environment of the stomach. A PICC line allows you to deliver medicine straight into your system with no interference from hostile environments.

The plan is that the IV treatment will be pulsed over a 5 month period. Alternating days and a week off every month or so. The PICC line is actually put in at a regional hospital close to Dr. J's old North Carolina practice. We will go to Mooresville for the PICC line and then head down I-77 to Ft. Mill for the first dose and instructions on infusing and IV care.

The IV antibiotics are the next stage in her treatment and cure. If they work as expected, she will continue oral antibiotics for another year or so. Then we will all cross our fingers that its gone.

Lynette has been very vigilant in her medication and supplement schedules. She is very conscious about what she puts in her body now. All of this attention to her nutritional health will surely help her heal sooner.

Anna seems to be doing well. She had a couple of days after she started taking her antibiotics where she was pretty tired. She went to Carowinds yesterday and she was pretty wiped out when she got home, but who wouldn't be? Anna is also very good about taking her meds. We have her taking a couple of supplements as well that have been very beneficial for Lynette. Anna is scheduled to go see Dr. J on June 23.

I still wonder if I have this disease. It's impossible to get Lyme disease from a tick crawling on you. This is all the evidence Lynette has of a tick encounter. Dr. J seemed to think that the damage displayed in Lynette's brain MRI was too severe to have happened between September and December. This suggest that she's had the disease much longer than when her symptoms first showed up. So what if Lynette has had this for a long time? What if Anna got the disease congenitally from Lynette? What if I was the original source of infection for Lynette? No bullseye rash, right? I truly believe that there are people who's genetic makeup makes them more susceptible to Lyme disease. I also truly believe that there are people carrying around this bacteria who will never show symptoms or won't show them until they are old and weak.