Friday, September 25, 2009

The C Word

After heart disease, cancer is the leading cause of death in the United States.  Cancer is currently the cause in approximately 13% of human deaths.  It is estimated that 547,000 Americans will die from cancer this year.  Prostate cancer is the most diagnosed cancer followed by breast cancer.  Children are more likely to have leukemia than any other cancer.

Cancer is commonplace in our society. We all know someone or have a family member who has suffered or died from cancer.  Cancer is generally defined as an overgrowth of cells that interferes with regular body functions.  It is a dreadful disease that can call for strong treatment.  Cancer treatment often involves aggressive drug therapy commonly known as chemotherapy.  Many chemotherapy drugs have to be administered intraveneously. Some of them can be very expensive.

There are many types of cancer, and many people who suffer from them. Because it is so common it has become an accepted component of the current healthcare situation in our country. Insurance companies do not balk at covering cancer treatments. Although, as with Lyme disease, the insurance companies have been known to deny benefits for costly regimens.

Prior to Lynette's visit with Dr. J on Tuesday, we had heard through the Lyme community that changes were afoot.  We had heard that Dr. J was being pressured by governmental entities in South Carolina to cease his practice.  Upon establishing his practice in South Carolina in 2007, Dr. J met with the SC Attorney General and some of his staff members to educate them about Lyme disease and its impact on residents of the Carolinas.  Dr. Jemsek was warmly received by the Attorney General and was impressed by the level of understanding shown by members of the AGs staff, several of whom had personal experience with Lyme disease.  Dr. Jemsek felt comfortable relocating his practice to the Palmetto state.

Dr. Jemsek admitted to us that he had some political capital that he could have called in.  He also felt that he was misled and that legal action may be called for.  The bottom line is that his practice is no longer welcome in the state of South Carolina.  Jemsek Specialy Clinic will be relocating to Washington, DC very soon.  Dr. Jemsek has a lease on a property in the Georgetown section of DC.  He has obtained his license to practice medicine there as well.  He is hoping to get his practice up and running in DC by the beginning of November.

Lynette finished up the first round of the tigecycline a week ago.  She also had to take flagyl last Thursday and Friday.  I figured the combination of these two drugs would wipe her out for Saturday.  Quite the contrary.  Lynette was as vibrant as I have seen her in a long time on Saturday.  Because of her weight loss, she has been frustrated with her wardrobe options. Lynette found a pair of jeans in Danielle's closet that fit her perfectly.  She and Anna went out shopping that day and spent hours at a time in individual stores.  Her face was alive, her body was alive, her attitude was alive.

Dr. J has prescribed Lynette 3 more weeks of antibiotic therapy.  She'll be getting meropenem and tigecycline morning and night on M, W, F.  We are hoping that Lynette got over the worst of the tigecycline with the first cycle.  She did feel worse at the beginning of the first cycle than she did at the end, and she hasn't had it for a week. We're thinking she might not have it as rough for this cycle.

Anna went with us to Dr. J's this time around.  He has started to treat her for babesia.  Anna's azythromycin dosage has been increased and she will be taking an anti-malarial drug for this part of her treatment.  Anna is very active and doing well, but she is somewhat discouraged that she has to take so many pills and continues to have frequent headaches and fatigue.  However Dr. J thinks that the symptoms that Anna is experiencing are due to her treatment and that they are a good sign that she is on the right track.

There are two major roadblocks to Dr. Jemsek relocating his practice to Washington, DC.  Earlier in September, Dr. Jemsek's wife Kay was diagnosed with breast cancer.  Within a week his 5 year old daughter Jordan was diagnosed with leukemia.  It's just a horrible situation.  He has so many sick people that depend on him.  But he has to put his family and himself first.  It's amazing that he is putting forth so much effort on behalf of his patients in light of his current personal situation. 

I've heard Lyme patients say that they'd be better off with a cancer diagnosis.  Their bills would be paid, people would understand when they say they are sick, and they wouldn't continually run up against brick walls when trying to get treatment.  I don't think you can say you would want one disease over another.  I would just wish that nobody has to have any of them.

Thursday, September 17, 2009

The Light at the End of the Herx

Around the turn of the previous century two dermatologists, an Austrian named Adolph Jarisch, and a German named Karl Herxheimer both observed an increase in symptoms of syphilis patients who were treated with mercury.  The death of the syphilis bacteria as a result of the mercury treatment caused a flood of endotoxins to be released, more than the body could filter out quick enough. It is now known that the presence of these toxins causes an increase in inflammatory cytokines including tumor necrosis factor alpha, interleukin-6, and interleukin-8.  It's not the toxins that make you feel sick, but your body's reaction to the increase in these inflammatory cytokines.

This increase in symptoms was dubbed the Jarisch-Herxheimer reaction.  It is known as a 'herx' for short.  This reaction has been observed in patients who are being treated for any spirochetal infection, the most common of which are Treponema pallidum, Leptospira, and Borrelia burgdorferi.  These bacteria are the causative agents of syphilis, leptospirosis, and Lyme disease respectively.

The herx reaction is a major source of concern and discussion among Lyme sufferers and practitioners.  People who are already suffering from Lyme disease are suffering from symptoms of the infection.  When they are treated with herbs and drugs that kill the spirochetes, their symptoms multiply. 

This was exactly what Lynette experienced at the end of January.  She told her story to her ob-gyn and he agreed that Lyme was a possibility.  He sympathetically prescribed Lynette a course of doxycycline. As soon as she started the doxycycline, all of her symptoms were exacerbated.  Lynette's numbness and tingling immediately transformed to neuropathy and paralysis.

A Lyme literate physician knows to incorporate detoxification tactics along with antimicrobial therapies.  Once you kill the spirochetes, you also have to eliminate the waste from the body as efficiently as possible.  Both Dr. Fishman and Dr. Jemsek have provided and continue to provide Lynette with tactics to assist with detoxification.

Lynette has had a much better week with the tigecycline.  Last week it was nausea, vomiting, and sleeping for 14 hours.  A classic herx.  This week she has felt much better, been quite active and required much less of the anti-nausea medicine.  She has had to curtail her schedule this week, not because of the way she felt, but because she had too many things she wanted to do.

Lynette gets basic blood work done about a week after she starts any new medicine.  I work from home on most Mondays and since she had just finished up her first week of tigecycline, she was due.  So we headed out to get her lab work.  On Tuesday she went to Anna's volleyball game, which happened to be an away game even though it was closer to home than Anna's school.  On Wednesday Lynette had an appointment with an occupational therapist to try and get some help rehabbing her hand.  She also did her Wednesday night church activities with her group of 1st grade girls.  Today she went to bible study at a local church with our friend Lisa.

Tomorrow is the last drug day for this cycle.  We are going back to Fort Mill on Tuesday.  This will be the first visit since June that Lynette has not had to try out a new IV drug.  Most likely they will be giving us 2 more weeks of tigecycling and meropenem, the latter being the very first IV drug that Lynette was prescribed. 

This means that if all goes according to schedule, Lynette is 3 weeks away from completing her IV therapy. Lynette continues to improve because of the treatment that she has been prescribed and the discipline that she has in following it. Is that a light I see?

Tuesday, September 8, 2009

I'm the Decider!

Because of the chance of adverse reaction to antibiotics, each new IV antibiotic that Lynette is prescribed is infused for the first time at the doctor's office as a safety measure.  Lynette's infusion nurse at Dr. J's office is responsible for teaching us how to perform the infusion.  There is usually some mixing procedure involved before the IV tubing can be hooked up to the infusion bag and the drug delivered.  This one was the most involved thus far.  I came with a bottle of saline, a bottle of powdered medicine, a syringe with a scary looking needle and a bag of saline.

As Lisa began our lesson on Friday, she started with a stern warning.  The new drug we would be getting today was tigecycline.  She warned us that this is the one that most of their patients suffer the most adverse affects from.  She encouraged us to call the clinic if the tigecycline was too hard on Lynette.  Some of the affects we might anticipate would be nausea, extreme fatigue and loss of appetite.  Lisa encouraged us to call the clinic if any of these things reached an unbearable state.  She said they could adjust the infusion schedule, if necessary, to try to minimize the impact of the drug.

Dr. J also added his own warning about the harsh affects of this drug.  He continues to be impressed with Lynette's progress.  He pushed harder for Lynette to seek the help of an occupational therapist for the issues she has with her right hand.  He thought that a couple of visits would be sufficient to teach her some therapeutic activities to help regain better mobility, strength, and feeling.  He didn't change her protocol outside of the IV drugs, which now include Levaquin and tigecycline 3 days a week for this week and next.  The Levaquin is once per day and the tigecycline is administered twice per day.

We had a great party at our house this weekend. We had friends over on Saturday afternoon and we made tie dyes.  We ate a great meal and enjoyed each other's company. Most of the guests came back on Monday for brunch and the unveiling of the tie dyes.  We made some really great tie dyes and we had lots of good food and good times.  Lynette hung in there pretty well and had a great time too.
The most exciting event of the weekend occurred on Sunday.  I drove Lynette over to a nearby middle and elementary school parking lot where I proceeded to get out of the driver's seat and let her take over.  It was here that we taught our three oldest children to drive.  I felt like I was teaching another new driver.  After she rode around the parking lot a couple of times I told her to hit the road.  She took us up Stratford Rd. to Thruway Center and back to Hanes Mall Blvd. for a couple more stops.  She knew it was time to start driving again, even if she is not 100% back to her old self.  Lynette understands that she will need to show more caution than she has been used to showing with her previous driving habits.  It was the first time she had driven in 7 months.
Today Lynette drove over to High Point to see her brother and sister-in-law and to go to a work out facility with them.  She did 20 minutes on an elliptical  machine and 15 minutes on another.  That would be enough to wear me out.  She came back to Winston-Salem in the afternoon to Anna's school to attend Anna's Volleyball game.  After the game she brought Anna home.  In North Carolina traffic safety laws recommend that no one under 12 ride in the front seat of a car.  Anna had turned 12 back in May while Lynette wasn't driving, so it was their first time in the front seat together.
About 8 hours after Lynette's first tigecycline infusion on Friday she became nauseated.  Dr. J had prescribed her an anti-nausea medicine a couple of months ago but she had only taken it once or twice to combat the affects of Flagyl.  This anti-nausea medicine makes you drowsy and she took it Friday night it made her very sleepy.  I think she is going to need this more with the tigecycline.
Lynette's day started today with a dose of tigecycline.  She was feeling very nauseous as we were leaving Anna's volleyball game.  She told me she hoped she could make it home without getting sick.  She put in an order for cottage cheese and mandarin oranges because she didn't think she could handle much more.  When she got home she took her anti-nausea medicine.  Then we hooked her up to her Levaquin dose followed by the tigecycline.  During the tigecycline dose she lost it.  Unfortunately there wasn't anything in her stomach, so not much came out.  And she never got around to eating the cottage cheese or oranges.  She also could not stomach her nightly dose of oral meds and supplements, which will have to wait until tomorrow.
This is going to be a rough couple of weeks.  If Dr. J thinks she tolerated the tigecycline OK, he'll be prescribing another cycle of a couple of weeks along with the first IV drug she took, meropenem.
When Lynette was incapable of many daily rudimentary tasks, I made desisions based on what I thought was appropriate and affective.  My command to her was, "I'm the decider!"  She is much more physically able now and it is going to be her decision as to how much she is willing to tolerate with this drug.  It's time for me to let her be the decider now.

Tuesday, September 1, 2009

Imagine a Life Without Wheat

Domesticated wheat cultivation originated in the Fertile Crescent of Western Asia around 10,000 years ago. It is said to be responsible for the origins of agriculture which resulted in ancient populations abandoning their nomadic lifestyles.

Today many of the staples of the western diet are based on flour made from ground wheat. Wheat flour is an essential ingredient in doughs that are used to make various forms of bread and pasta. Food items that have their basis in wheat flour are numerous: Bread, biscuits, pancakes, bagels, noodles, dumplings, pizza crust.

Wheat was important source of nutrition for the prehistoric farmers of the Fertile Crescent. It provided sources of energy from its carbohydrate, protein and fat content. The protein component of wheat comes from the proteins gliadin and glutenin. The composite of these proteins is known as gluten. When dough is made from ground wheat, gluten is important for providing viscosity and extensibility to the mix. This is what makes bread and other wheat flour products springy and light.

There is a small portion of our population that is intolerant to gluten. In some people the body creates an inappropriate immune response to gluten. This can result in a range of digestive responses including malabsorption of nutrients, cramping, abdominal pain, bloating, and diarrhea. Intensive long term antibiotic therapy is also a major stress on your digestive system. In order to eliminate any contributing factors, a gluten free diet is commonly encouraged for those who are subject to antibiotic protocols.

Dr. J prescribed a gluten restricted diet for Lynette on her first visit back in April. Lynette has been very compliant with this recommendation. She does cheat once in a while, but it is never something that I would consider a major dose of gluten. Keep in mind that Lynette has never shown any sign of gluten intolerance, but it is always a good idea to follow doctor's orders.

Several months ago when Lynette was severely debilitated, many of our generous friends wanted to bring us food to help out with our situation. We appreciated their generosity and appreciated what they did for us. I personally find solace and therapy in cooking. While I don't want to discount the thoughtfullness and generosity of others, the donations of food somehow infringed upon my well being. Furthermore, we received food that violated the dietary recommendations of Dr. J.

We surely miss many of our favorite dishes that we've eaten over the years that include gluten:

Muffaletas, Steak and Cheese sandwiches
Fajitas, Quesadillas
So many breakfast foods -- bagels, toast, English muffins, french toast, pancakes, biscuits

Faced with the task of conforming to a gluten free diet, it is actually not that hard. We can eat all the potatoes and rice that we want. We have found some gluten free (GF) substitutes for some of the the things we miss. We found a GF muffin mix that made some pretty good muffins, once with blueberries, and again with sweet potato, cinnamon and pecans. We have found some GF pasta that approximates the real thing, but I have had more luck with the larger pastas, than the stringy ones. All of our Mexican meals have included corn tortillas these days. Unfortunately we have not found a suitable substitute for wheat flour based bread. And we have just given up on most of the breakfast foods that we crave, instead relying on the occasional use of potatoes or grits.

Unfortunately none of this is helping with Lynette's weight loss. Her appetite has come and gone, but her weight has only gone. She's not emaciated, but she wishes that she wanted to eat more and that she could gain some weight back.

I suppose she is getting enough nutrition though, because she has been tearing through this house like the Tasmanian Devil. Since Lauren and Danielle have returned to college, Lynette has seen the opportunity to declutter. There are garbage bags stacked amongst the hallways and doorways of the house. There are items lined up along walls to be taken to Goodwill, donated to the Disabled Veterans, and readied for a yard sale. I've made a couple of trips to the post office to mail items to lucky eBay auction winners.

Lynette has also started exercising again, a passion that she has had all of her life. She has been doing some things at home with televised programs and other self employed routines that she has learned about over the years. Today she visited a local gym with her sister-in-law Jonna where she was able to use some weight machines that most people don't have access to in their homes.

Lynette made it through her last cycle of antibiotics without any major adverse affects. We are once again looking forward to our next visit with Dr. J which will be coming up this Friday. Lynette will be receiving the first dose of the last of her IV antibiotics. I think we are starting to see the light at the end of the IV tunnel.

(The picture at the top of this post is the gluten free pasta dinner that we enjoyed tonight)