Contact your Federal Representatives

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

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

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

http://www.lymediseaseassociation.org/

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.

Over the Hump

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

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

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

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

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

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

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

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

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

Watching Your Kids Grow Up

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

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

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

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

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

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

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

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


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

Summer Camp

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

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

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

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

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

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

Hope for the best. Prepare for the worst.

Lynette's appointment with Dr. J last week went well. She had a successful trial of the IV Azithromycin at Jemsek Specialty Clinic (JSC). It's only once per day, but it takes an hour to dose. Dr. Jemsek was pleased with Lynette's progress. He did a simple motor skill/coordination test that confirmed her improvement. We didn't expect many changes in Lynette's protocol prior to the visit. But we left with 4 new prescriptions and recommendation for another probiotic.

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.

Lyme is Everywhere!

If you Google "Lyme Disease Symptoms" you get 35,800 results. Dr. Joseph Burrascano lists 63 separate symptoms of Lyme disease in his Advanced Topics in Lyme Disease -- Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses.

http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

The symptoms vary so wildly that they describe conditions that millions of people suffer from. So many of these symptoms are general like fatigue, headache, fevers, joint pain. When you are familiar with the symptoms associated with Lyme disease, it seems like everyone could have the disease.

A friend has a swollen knee with unexplained stiffness. A coworkers spouse has numbness and tingling in their hands and feet. Your friends mom has a multiple sclerosis diagnosis at 55 years old. Somebody on a news broadcast has Bell's Palsy. Lynette and I look at each other and say in unison, "Lyme disease!"

Our population suffers from an astounding array of chronic diseases. There are very few of these diseases for which there is a known cause. No causative agent has been identified for ailments such as Chronic Fatigue Syndrome, Fibromalgia, Rheumatoid Arthritis, Amyotrophic Lateral Sclerosis, Alzheimer's Disease, Multiple Chemical Sensitivities, Lupus, or Multiple Sclerosis. These are all common misdiagnoses for Lyme disease sufferers.

Dr. Alan MacDonald, a respected Lyme researcher and pathologist in New York state received brain tissue from 10 deceased victims of Alzheimer's disease. He found the spirochetes that cause Lyme disease in 7 out of the 10 specimens.

The CDC admits that their reporting of Lyme disease is likely understated by 90 percent. Is it possible that all of these people with CFS, FM, RA, ALS, AD, MCS and MS are infected with borrelia burgdorferi?

I don't think so.

I do think it is possible that some of them are infected with Lyme disease. I also think it's impossible that all of them have Lyme disease. But if you consider how adept this disease is at evading the immune system and how hard it is to detect with standard testing, is it so unlikely that there are other unidentified or hard to detect pathogens that are the cause of illnesses for which no actual cause has been identified?

Sorry it's been so long since I've posted. We have just returned from enjoying a week at the beach with Lynette's family. We had a great time and Lynette held up pretty well. The heat got to her on a couple of days. She figured out early in the week that an afternoon nap was beneficial. The week was a drug holiday for her so she wasn't subjected to twice daily infusions 3 times a week. We did infuse a couple of liters of lactated ringers to keep her hydrated.

Lynette's brother Tim and his wife Jonna were a major part of our life support system when Lynette was in really bad shape. They were a big part of helping Lynette get back on her feet. A few days before the beach trip Jonna became very ill. She is doing much better now, but Tim and Jonna were unable to join us for the beach trip. It was a huge disappointment for the whole family. How strange is it that Tim and Jonna were there to help Lynette when we needed them and then they had to miss out on the trip?

I made it through my 4th PICC dressing change tonight. I messed up once and had to redo my gloves. I still find the whole process rather nerve wracking. But I want to be careful because I don't want to be responsible for giving my wife an infection.

We are headed back to see Dr. Jemsek tomorrow. Lynette has not had any IV antibiotics since the July 10th. We have heard about Dr. J's protocol from enough of his patients and the nurses at the clinic and figure that Lynette will start IV Zythromicin tomorrow. She likely will be discontinuing the IV Merren. We'll see what else they have in store for us.

Anna is doing well. Although her symptoms have been milder than Lynette's, I see improvements from the symptoms that she has had. Anna is heading back to the beach this weekend with a friend. She'll be going to Volleyball camp the next week. Soon after that she'll be spending a week at Camp Hanes. Most of the time she is a ball of energy bouncing around the house.

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.