Wednesday, December 23, 2009
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!
Thursday, December 17, 2009
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.
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.
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.
Monday, December 7, 2009
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.
Thursday, November 26, 2009
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.
Wednesday, November 25, 2009
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.
Thursday, November 19, 2009
I'm sure it's not a surprise to most of you reading this that we have had a recent increase in our medical expenditures. If you have health insurance, you probably feel some security in having this coverage. It's comforting to know that when you go to the doctor or take your child the doctor that your visit will be covered by your health insurance.
Lynette received a detailed statement of charges each time we went to see Dr. J. Most of her visits over the summer included charges for a generous supply of pricey IV antibiotics. Since Dr. J was out of network, all insurance claims had to be file by the patient. Lynette gathered up the supporting documentation, filled out the necessary forms and mailed the claims off to Cigna. When the first claim came back underpaid, Lynette realized that they had paid on the unit price for her antibiotics and not on the extended price.
Lynette contacted the insurance company to let them know of their error. We figured this was an isolated event and it would be quickly corrected. The next time Lynette made a similar claim, the same problem was encountered. Lynette contacted them once again to let them know that they had incorrectly processed the claim. The next time Lynette had a similar claim to post, she took special care to annotate the supporting documentation to help the claims processor correctly encode Lynette's claim. Once again they filed the claim based on the unit price instead of the extended price. Even with extra direction, they still filed the claim based on the unit price rather than the extended price. Lynette filed more appeals, and today we have finally received a benefit check for these claims.
The cost of Lynette's Lyme disease treatment is approaching $50,000. At this point I feel somewhat happy that our insurance has covered 60% percent of this cost. We figured the insurance benefit would stop at one month of IV antibiotic therapy. But they have not denied any of the claims once we let them know where the right numbers were. The level of the benefit has been higher than what we expected.
The Academy of Motion Picture Arts and Sciences has pared down their choices of documentary of the year to 15 movies. One of those movies is Under Our Skin. This is a movie about Lyme disease and the political and medical controversy that surrounds it. I surely don't expect Under Our Skin to win the Oscar for best documentary, but I am so excited to think of the attention that would be drawn to the Lyme plight if Under Our Skin was one of the 5 nominees for best documentary.
This is the part where I usually write about Lynette. She's not all the way better, but she's doing pretty damn well.
Thursday, November 12, 2009
These social networks are a great source of support and information. Although each member has a different story to tell, you start to see that you have things in common with many of them. They have similar symptoms. They are on the same medicines. They see the same doctors.
No doubt there are a lot of stories of dispair to be witnessed. There are patients who have been sick for years but just recently diagnosed. There are people who are sick and have lost their job and their income and are left alone and sick to fend for themselves. There are the typical stories of denial by the medical community. There are patients who have been aggressively treated and have made no progress.
Jordan Fischer Smith, the forest ranger who is one of the Lyme sufferers who's illness is chronicled in the Lyme documetary Under Our Skin said on camera that he did not start to feel well until his 3rd year of treatment. Noted Lyme practitioner Joseph Burrascano endured treatment of his Lyme disease that lasted for more than 3 years.
The worst of Lynette's symptoms came on after her sympathetic OB-Gyn wrote her a prescription for doxycycline. Lynette's reaction to this medicine was our confirmation that she was suffering from Lyme disease. Lynette was forced to use a walker and wheel chair to get around due to the herx that she suffered from this treatment. Lynette's formal treatment for her Lyme disease started in the middle of February. Although progress seemed slow to us by the beginning of May Lynette was walking unassisted.
It is a tendency among the members of the Lyme social networks to leave these communities when the affects of their disease diminish. As Lynette starts to return to a normal life, I find myself feeling like I too could draw away from this community. But I do still want to be involved. There is a lot of progress to be made in diagnosing Lyme disease, in getting proper and adequate treatment, and in recognition of how serious of a problem this illness is.
Lynette and I are going to the wedding tomorrow night of one of our oldest daughter's childhood friends. The other night Lynette was going through her wardrobe trying to find something to wear to the wedding that would be kind to her diminished stature. She was also trying on shoes that she could wear and not fall over herself. Lynette says she still has to concentrate when walking in tricky shoes.
Lynette has set a date for her return to work. She hopes to return to part time duty on December 7th. Her disability insurance prohibits her from returning to work full time. I suppose they want to avoid a relapse. She will be on part time for a couple of months before returning to full time. This would put her on schedule to return to full time almost exactly one year after having to go on disability.
As it stands now, it looks like we will be visiting Dr. J again in mid January. After Lynette's phone consult with Dr. J last Monday, she is now on oral antibiotics on a M, W, F, two weeks on, two weeks off schedule. Lynette had not had any antibiotics for 3 weeks following the completion of her IV therapy. She did notice some minor herx reaction upon starting the orals. She felt some effects in her hands and feet the first couple of days that she started back on the oral antibiotics.
Lynette is getting better and I intend to stick around.
Wednesday, November 4, 2009
I pursued getting the line pulled earlier, but I couldn't get any of the smart people to support me. Lynette's doctor sent us more supplies to keep the line going. Lynette had a phone consult with her doctor on Monday and he approved having the line pulled. Several phone calls were made and appointments set up and today the line was pulled. Lynette called me immediately afterward. She was so energized.
The phone consult was actually more expensive than an office visit. But an office visit would be hard for two reasons: 1) his office isn't open yet, and we haven't heard a definite date. 2) it would cost us at least $150 in travel expenses to go see him. I convinced Lynette to do the phone consult and have the PICC line pulled locally where it could be done by a practioner who is in our insurance network and 100% covered.
Based on her experiences, Lynette has made the following commentary about office visits versus phone consults:
(names changed to protect the warriors)
Top 10 reasons I like office visits better than phone consults
10.Get to file them with our insurance
9. Cost 3 times less out of pocket
8. Get to give out hugs
7. Have interesting conversations in the waiting room
6. Get to see friendly office staff
5. Shaun get's out of work
4. Get hand written prescriptions that CVS can't translate
3. Get to see Nurse Lisa
2. Get colorful chart from famed artist Dr.
#1 reason I prefer office visits -
1. Get to go to Six Pence Pub after visit
Wednesday, October 21, 2009
Tuesday, October 20, 2009
The IDSA is the author of the accepted Lyme disease treatment guidelines. Unfortunately these guidelines are out of touch with the current research. The guidelines are authored by panel members who have financial interests in products involving Lyme disease testing and vaccines. This presents a direct conflict of interest. The IDSA's denial of the existence of chronic Lyme disease results in denial of treatment to many people who are infected with Lyme disease.
I went to check out the language of the legislation proposed in the New Jersey Senate. It did not seem nearly as exclusive as I had expected. The point of the bill is to establish a research center to study diseases classified as NEIDs. These include Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Lyme Disease, Multiple Chemical Sensitivity and other environmental illnesses. The language in the bill states that the mechanisms of transmission of NEIDs include parasite borne infection. It even mentions the extended length of time that may lapse before getting a Lyme disease diagnosis. The bill supports research to determine the etiology of these conditions. I don't really see the harm in this legislation. You can read it here yourself. Maybe one of the readers can explain the uproar.
Lynette finished her IV antibiotic therapy on Friday. I took pictures. As you may recall, one of the drugs in her last cycle made her very nauseous. Lynette had a major battle with nausea through the entire cycle. Even though she had little appetite, Lynette found that she felt better with food on her stomach. While there wasn't much she wanted to eat, Lynette had cravings like a pregnant woman. Bean dip. Sushi. Steak and Cheese (hold the bread). She also developed aversions to many foods and drinks that she would normally like. She didn't even want to drink water or swallow pills. She skipped about 85% of her supplements and other prescribed medicines during this last cycle.
Today? We talked on the phone this afternoon about supper tonight. She went to the grocery store and picked up some items for our meal. She took chicken out of the freezer to defrost. When I got home from work she had already prepped one dish. She chased me out of the kitchen to go change my clothes and start the grill. I love a forceful woman!
Lynette is infusing a liter of lactated ringers daily for the week following the completion of her IV antibiotic therapy. After that her PICC line will require a daily saline and heparin flush and a weekly dressing change. Due the transition of Dr. J's practice, they are not available to see Lynette until the second week in November. It is at this time that they said they could remove the PICC line.
We have enough supplies on hand to maintain the line until November 2. We are pursuing options to have the PICC line removed locally sooner. There's no way we will get up to the new JSC before we run out of supplies. We also see no reasoning for maintaining this line, considering the added risk of contamination that comes with the frequent flushes and dressing changes.
I talked to the staff at JSC and they suggested that we wait a week or so to make sure that Lynette is really feeling well. At that time they said it would be OK to have it pulled locally. I also talked to Lynette's PCP and they said they could get us an appointment to have it pulled.
Thursday, October 1, 2009
This is definitely a step in the right direction. However this news has managed to boil up a lot of anger in me. Why has it taken this long? The population of our state is approaching 10,000,000. The CDC has collected reports of North Carolina residents being infected with Lyme disease. While the numbers are low, it is estimated that the CDC is missing as many as 80% or 90% of actual cases. How can all of these people test positive for Lyme disease if there are no ticks carrying Lyme disease in our state?
The wife of a man that I work with was going down the path of a breast cancer diagnosis. Her tests were negative and she recalled a recent tick attachment. Her doctor tested her for Lyme disease and she was positive. She was bitten in North Carolina. A woman that I know who lives in Kernersville was bitten several years ago near her home. She was treated with a short course of antibiotics and was well for a few years before symptoms returned. She was bitten in North Carolina. This same woman was braiding her daughter's hair and saw an embedded tick in her daughter's scalp. A bullseye rash developed at the site of the bite. The child had also been bitten near her home in NORTH CAROLINA.
The Department of Defense did a study of ticks removed from service members at various military installations mostly in the Eastern United States. The ticks were tested for Lyme disease. The highest rate of tick infection was at the Marine base Camp Lejuene. Camp Lejeune is in North Carolina.
One of the justifications that officials sight in denying that Lyme exists in our state, refers to a study done in Georgia that analyzed ticks found on reptiles. In the case of one species of lizard, it was found that there was an enzyme in the lizard which was effective at cleansing their bloodstream of the Lyme bacteria. Supposedly this eliminated the risk of infection for humans. However, another study done in South Carolina found that another lizard species, that had ticks attached, had a 50% infection rate with borrelia.
One of the reasons that a Lyme diagnosis is often dismissed is that the tests are so innaccurate. Unfortunately many Lyme infected patients test negative with the current tests. Doctors in North Carolina see these negative tests as an absolute negative. Lyme tests don't test for the presence of the Lyme bacteria. They test for your body's response to it's presence. The Lyme bacteria employs several tactics to evade the immune system. This minimizes the body's immune response. This article is the most concise one that I've found that talks about the various evasive tactics of borrelia.
Tom Grier is a Lyme patient with an education in microbology. Although he addresses very scientific information, he has a way of writing about it that is more accessible to the layman. For a little more detail of some of Lyme's evasive tactics as well as more indepth information about Lyme disease that bucks IDSA ideology, check it this great article.
I'm hoping that this news will change the ways of physicians like Dr. Robert Kelly of Maplewood Family Practice in Winston-Salem and Dr. Melanie Adams of Forsyth Pediatrics in Winston-Salem and Dr. Michael Blocker in Burlington. Dr. Kelly saw Lynette and was sure that Lyme is not an issue in North Carolina. Dr. Adams and Dr. Blocker were both aware of Anna's positive Lyme test and dismissed it. Dr. Adams was glad that we don't have to worry about Lyme in North Carolina.
There is still a lot of pushback from the IDSA. They are the ones responsible for the heavy handed tactics that enforce doctor's denials of Lyme and it's chronic form. There is no doubt that the IDSA is behind the effort to shutdown doctors who treat Lyme aggressively including Dr. Joseph Burrascano in NY, Dr. Ernie Murakami in British Columbia, and Dr.Joseph Jemsek in South Carolina, who is in the process of relocating his practice for the second time in 3 years. We have a long way to go. But we are moving in the right direction.
Friday, September 25, 2009
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
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
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.
Tuesday, September 1, 2009
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
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)
Wednesday, August 26, 2009
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
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
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
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.
Friday, July 31, 2009
Minocycline is an antibiotic that Lynette has been taking since the beginning of March. It was originally prescribed to her by Dr. Fishman in Maryland. This drug has other beneficial properties that may reduce inflammation. Mycobutin is an antibiotic that has similar properties. Dr. J switched Lynette off of the Minocycline and onto the Mycobutin.
Another new prescription that Dr. J wrote was for Deplin. Deplin is a source of folate, a substance similar to folic acid, which is necessary for a multitude of molecular/biological processes in the body. This substance is crucial in the building of new cells.
One of Lynette's most aggravating symptoms right now is a tightness across her abdomen. She describes it as feeling like she is wearing a very tight corset. It flairs up when she exerts herself. Exertion for Lynette right now is walking up our treacherous driveway to the mail box. Dr. J wrote Lynette a prescription for Lyrica. It's a drug that you see advertised on TV to treat the symptoms of Fibromyalgia. Dr. J said he was prescribing the lowest dosage available. In fact our pharmacy had to order more. Lynette doesn't feel that this medicine is helping her.
There are some 5 trillion living organisms in our body. The majority of these are beneficial bacteria that live in our digestive system. These organisms aid with digestion and control the growth of undesirable organisms. Antibiotics kill beneficial organisisms in our body. Taking antibiotics upsets the mix of all these beneficial bugs in your gut.
Lynette has been taking antibiotics since the end of January. Since the middle of June she has been receiving IV antibiotics 2 out of every 3 weeks, 3 days a week, twice a day. Along with the antibiotics, Lynette has been on a constant regimen of probitics. Probiotics are live organisms meant to replace those that are compromised by the antibiotics. It's impossible to replace the specific mix of cultures that are killed by the antibiotics so there are bound to be affects on your GI tract. Lynette's symptoms have been no worse than loose bowels, but there is nothing pleasant about that. Dr. Jemsek prescribed Lynette Diflucan and recommended taking a probiotic with saccharomyces. Diflucan is an antifungal that is often prescribed to control yeast overgrowth. Saccharomycesis yeast. I don't get it, but Lynette reported today that she thought the probiotic was helping.
Dr. J asked about Anna when we were at JSC for Lynette's appointment. Anna is doing well. After we got home from our beach vacation, one of Anna's friends called her and invited her to return to the beach. Anna spent several days over an extended weekend with her friend Sierra, most of which was at Myrtle Beach. Anna got back from the beach on Monday and turned around left for Volleyball Camp in Salisbury, NC on Tuesday. She finished up VB camp today and is home now. We'll be taking her up to King, NC on Sunday to attend Camp Hanes for the week.
Some of Anna's friends tease her about all of the pills she has to take. I told Anna to remind her friends what shape Anna's mother was in back in February, and to tell them she's taking the pills to avoid being sick like that.
In Lyme disease treatment there are two schools of thought. One group, supported by the Infectious Diseases Society of America (IDSA), contends that Lyme disease is easily diagnosed, and easily treated. The IDSA says that all infections are cured with a 10 to 28 day course of antibiotics. They also dictate that there is no such thing as chronic Lyme disease and that any symptoms that remain or recur after treatment are unrelated to a resistant or recurrent Lyme infection. They contend that standard testing methods are accurate and adequate.
The other school of thought in treatment and diagnosis of Lyme disease is supported by International Lyme and Associated Disease Society (ILADS). ILADS believes that the standard testing methods are grossly insensitive. They believe Lyme patients should be treated according to their clinical response and not based on any rigid treatment duration.
The IDSA has authored Lyme disease treatment guidelines which are generally accepted by mainstream medical practitioners and insurance companies. This presents a major roadblock for Lyme disease sufferers seeking adequate treatment.
Connecticut Attorney General Richard Blumenthal filed an anti trust suit against the IDSA last year. He sited multiple conflicts of interest among the IDSA's guidelines authors. Guidelines authors were shown to have financial interests related to Lyme disease, including patents, interests in test kits and vaccines, and associations with insurance companies and universities with endowments from major medical corporations. The IDSA agreed to have their guidelines reviewed by an entirely new panel that did not have any known conflicts of interest in this area.
As part of the settlement, a hearing was held in Washington, DC yesterday by the IDSA to allow testimony in regards to the IDSA's Lyme guidelines. Presenters at the hearing included members of the IDSA and ILADS, as well as researchers, practitioners, patients and advocates. From what content of the hearings that I was able to see, I thought that most presenters made valid arguments for their side. There were 4 or 5 presenters who I was familiar with because of our journey through this disease. Most of the information presented conformed to my understanding of the various issues regarding treatment and diagnosis of Lyme disease.
Many years ago the IDSA was the only authority on Lyme disease so they got in the door first. They drew sweeping conclusions about Lyme disease before there was enough evidence to do so. In 1982 our government made it much easier for scientists, practitioners and businessmen to profit from the discovery of new biological entities. Patents could now be issued for the discovery of a new bacteria, disease pathway or antigen. Lyme disease researchers gobbled up all the intellectual property they could grab. Very early in the game, in order to solidify their position in the treatment and diagnosis of Lyme disease the IDSA drew a line in the sand. With the publication of their guidelines they committed too early and found themselves in a position where they could not relent and still save face.
If Lyme treatment guidelines were to be relaxed it would cost insurance companies money. Insurance companies control health care costs by dictating which treatments and diagnostic procedures they will cover. They also have very robust lobbying representation at all levels of legislation. My local NC Representative told me that you can't go after the insurance companies because their lobby is too strong. The insurance companies have nothing to gain by conforming to relaxed standards regarding diagnoses and treatment of Lyme.
The truth will eventually come out. The current attitudes about Lyme disease are not too different from public opinion of early HIV. The general population thought that HIV was not a problem because it did not affect them. Then gay friends started dying. Then there were friends who weren't gay that were dying. The government paid attention and kicked up funding for research into treatment and diagnosis of HIV. I think that Lyme disease is approaching the stage where it will get much more recognition.
Tick populations are increasing. Incidence of tick borne illness is spreading like osmosis from areas of higher concentration to areas of lower concentration. Eventually there will be enough people infected that there will be public outrage and our government will realize the impending crisis of tick borne illnesses.
There's very little that we as individuals can do to support this fight. The press and our legislators are just about all we have. We can only hope for the best and be prepared for the worst.
Tuesday, July 21, 2009
Monday, June 29, 2009
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
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.