Dear Members of the House Energy and Commerce Committee and Members of the Subcommittee on Health

I've been working on putting together a letter to all of the members of the US House Committee on Energy and Commerce and the Subcommittee on Health. Current Lyme legislation has been submitted by a NJ congressman and is now in committee. I am sending out 58 letters. These guys don't have the common decency of publishing their email addresses.








I did a mail merge and ended up with 174 pages for all of the letters. I had to print 58 individual envelopes, sign the letters, fold the letters, seal the envelopes and apply postage. I hope all my efforts stir up some interest in the recipients.

The letter is a modified version of the letter I sent to my state representation. I made some changes to show my support for the bill that has been proposed. Here is the text of the letter:

Representative Mike Ross
2436 Rayburn House Office Building
Washington, DC 20515

Dear Members of the House Energy and Commerce Committee and Members of the Subcommittee on Health:

I am writing you to express my concerns about the state of Lyme disease diagnosis and treatment in our country. Currently available testing is grossly inaccurate. Doctors are afraid to properly treat victims of this disease because of scrutiny of medical associations who conform to guidelines that are antiquated, inaccurate, and insufficient. The health care industry is crippled by insurance companies’ reluctance to pay for adequate treatment for sufferers of Lyme disease.
Lyme disease is contracted from the bite of an infected tick. Symptoms include fatigue, fever, numbness and tingling in hands and feet, joint pain, and cognitive problems. Lyme disease is frequently misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, ALS, and Multiple Sclerosis.

HR 1179 has been introduced by Representative Christopher Smith of New Jersey. The legislation is entitled Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009. The bill is currently in committee. The purpose of the bill is to increase awareness of Lyme disease and support proper diagnosis and treatment of this malady. This bill has died in committee in the last two congresses.

Lyme disease is a real and growing problem in our nation. The Centers for Disease Control (CDC) says that Lyme disease is under reported and that only about 10% of cases that meet CDC surveillance criteria are actually reported to the CDC. According to the CDC, reported cases of Lyme disease increased nearly 35% between 2006 and 2007.

There are two schools of thought on diagnosis and treatment of Lyme disease. The Infectious Disease Society of America (IDSA) has authored Lyme guidelines for the Clinical Assessment, Treatment and Prevention of Lyme disease. This document is the accepted guideline for Lyme care, conformed to by the general medical community. The treatment guidelines dictate 10-28 days of antibiotic therapy as the cure for this ailment. The IDSA denies that a chronic form of Lyme disease exists, and that those who do not respond to short term antibiotic treatment must be suffering from some other condition. For many Lyme sufferers, short term antibiotic therapy has proven to be ineffective, especially for those people who have suffered from Lyme disease for extended periods of time. There is undeniable proof that short term treatment is not effective in a large number of cases. Some patients have required months of IV and oral antibiotic treatment to achieve a successful cure.

The Connecticut Attorney General’s office filed suit against the IDSA in 2006 sighting numerous conflicts of interest among the IDSA’s board members. These conflicts included members who were stockholders in pharmaceutical companies and another member who held a Lyme treatment patent. The IDSA expunged one of its board members when the board member argued that chronic and persistent Lyme disease exists. The board member failed to conform to the dictated philosophy of the IDSA and was removed.

The IDSA is currently executing an underground pressure blitz to coerce doctors to sign on in opposition to HR1179. The IDSA is most likely motivated to save face in light of their insufficient Lyme guidelines. These guidelines were issued prematurely with protest by and skepticism from some of their board members. The wording in HR1179 goes directly against the foundations of the IDSA guidelines.

The other school of thought on the treatment and diagnosis of Lyme disease is represented by the International Lyme and Associated Diseases Society (ILADS). The ILADS contends that there is no definitive test for Lyme disease and that a diagnosis should be made based on the patient’s symptoms, a viewpoint supported by the CDC. Furthermore the ILADS states that duration of therapy should be guided by clinical response rather than some arbitrary treatment course (i.e. 10-28 days). The wording of HR 1179 is in agreement with the diagnosis and treatment philosophy of the ILADS guidelines.

This issue is very near to me as my wife is currently suffering debilitating symptoms related to Lyme infection. This is a person who was running 3 miles several days a week six months ago. Now she is no longer able to walk or use her right arm. She is stricken with horrible muscle spasms, fatigue, and significant weight loss. My 11 year old daughter has also tested positive and is beginning to show symptoms.

My wife has been denied treatment by several doctors including an infectious disease specialist. She was denied because she did not have a positive Lyme test. My wife’s Lyme test results were equivocal, but given her condition and the equivocal test results, an out of state Lyme specialist and ILADS member was able to make a clinical diagnosis of Lyme disease. She is currently being treated with antibiotics. Her condition has improved since she has started treatment. Meanwhile we are preparing for denial of benefits from insurance companies as my wife’s therapy continues beyond the covered treatment duration.

We took my daughter to another infectious disease doctor, with her positive tests in hand. This doctor disputed her test results and refused to treat here. So we have a person with obvious Lyme disease who can’t get treated because she doesn’t have an unequivocal positive test and we also have a person with an unequivocal positive Lyme test who also cannot get treated. Where are sufferers of this disease supposed to go for treatment?

The primary issue is that the general medical community will not treat this disease aggressively due to reluctance of insurance companies to cover long term Lyme treatment. Treatment beyond the IDSA guidelines garners increased scrutiny that doctors prefer to avoid. Doctors who have treated outside the IDSA guidelines have been called before state medical boards and been stripped of their licenses.

Without proper treatment there are many extremely ill people with nowhere to turn. In order to get appropriate care, patients are forced to see doctors who operate out of the medical mainstream and do not deal with insurance companies, so called Lyme Literate Medical Doctors (LLMD). There is case after case of people who have been treated by LLMDs who have been cured by long term antibiotic therapy. Unfortunately insurance companies are unwilling to support treatment of these patients by LLMDs.

This country needs legislation that will protect medical providers from punitive actions for treating Lyme sufferers in a manner that is appropriate to their condition. Insurance companies need to be compelled to cover treatment appropriate to cure people of this horrible disease. Funding needs to be appropriated for research into more accurate testing methods.

An independent documentary has recently been released called Under Our Skin. The film chronicles the plight of many Lyme sufferers and the state of Lyme treatment and diagnosis in the United States. Please take the time to watch this film. You will be overwhelmed and horrified at what is transpiring in this country with regard to Lyme disease.

Thanks for your time.

Shaun Funk
5205 Bridge Pointe Dr
Clemmons, NC 27012

Very Interesting Animation of Lyme Pathogenesis and Outcome of Various Treatments

I am posting this link by itself because it is very interesting and educational. The video explains in great detail how the Lyme bacteria causes your illness and fools your immune system into attacking healthy tissue. The second part of the animation describes 3 different treatment regimens and their predicted outcomes.

http://www.envita.com/sections/disease/lyme/default.aspx?gclid=CITc6vaFtJkCFRJdxwod8wNX6A

North Carolina is not a Lyme State

When Anna saw her pediatrician back in the fall, Lynette mentioned to Dr. Adams that Anna had had the bulls eye rash. Dr. Adams brushed it off and said that it was a good thing that we don't live in a Lyme state.

Anna went to see an infectious disease doctor in Burlington on Tuesday, with positive tests in hand. The doctor disputed the results and refused to treat her.

Lynette called the pediatrician to get her input on Anna's positive test results. The response was that the tests are inconclusive since we do not live in a Lyme endemic area.

We are all learning now that Lyme infected ticks have been instructed to stop their advancement at the borders of our state. Whether they choose to enter from South Carolina, Tennessee, or Virginia, they are not welcomed here since we are not a Lyme state.

There was an article in the Statesville Record and Landmark this past Sunday about Lyme disease. The article discusses the general Lyme disease controversy as well as the cases of two local women who suffered from the disease. Here is a link:

http://www2.statesville.com/content/2009/mar/15/lyme-disease-often-misunderstood/news-local/

I have come across two separate Lyme advocacy groups in North Carolina via their websites. One of them is the North Carolina Lyme Disease Foundation. There website is http://www.nclyme.org/. I was not able to find a lot of detailed information on the site. Another group that I found is the Tick-Borne Infections Council of North Carolina. Their website is http://www.tic-nc.org/. The website has a little more information, but it isn't the most current information that I've seen.

An independent documentary about Lyme disease called Under Our Skin has recently been released. It is both enlightening and horrifying to see. There is even a quote from a Lyme sufferer in the movie who says that his doctor told him that North Carolina is not a Lyme state. I encourage you to visit the website and watch the trailer for the movie:

http://www.underourskin.com/

There is also a Store link on the page that allows you to purchase a copy of the film. There is actually a gala tonight at the Ballantyne Village Theater in Charlotte where Under Our Skin will be shown. It's the prototype if you will for other pre-release showings of the film meant to create awareness of the Lyme disease situation. The official theatrical release of the film is scheduled for July.

I got a response from NC State Representative Pete Brunstetter to the letter that I sent him regarding Lyme disease in North Carolina. Apparently the current legislative cycle is beyond the point where new legislation can be submitted. That doesn't mean I'm going to quit bringing it up. He also indicated that he was not going to drop the issue. I am also working on our representation in Washington. There is current legislation in a House committee to establish appropriate legal standards of Lyme disease and the proper approach to diagnosis and treatment. This bill has been submitted twice before and died in committee. I will be contacting the members of the Energy and Commerce committee to request that they take action on this bill.

To emphasize the point that Lyme does not exist in North Carolina I want you to look at some information gathered by the North Carolina Department of Health and Human Services. I know I have posted this in a previous blog, but here it is again for good measure. The website shows incidence of various diseases by county in North Carolina from 2000 to 2005. After opening the link, search for LYME DIS.

http://www.epi.state.nc.us/epi/gcdc/pdf/CDbyCountybyYear2000-2005.pdf

The CDC estimates that Lyme disease is under reported by 90%. Simple math tells us that the the 552 number reported as a total is more accurately above 5000. Furthermore, the CDC also reported that Lyme in North Carolina increased 71% between 2006 and 2007. Taken all of these figures together, one can estimate that the number of cases that will be reported in North Carolina for 2009 is in the neighborhood of 50,000.

Good thing we're not a Lyme state.

Letter to North Carolina Legislative Members

This is a letter that I emailed to our representatives in the North Carolina General Assembly. Bill McGee is our State House Representative. Pete Brunstetter is our State Senate Representative.


Dear Mr. McGee and Mr. Brunstetter:

I am writing to you to express concern about diagnosis and treatment of Lyme disease in North Carolina. Lyme disease is an increasing threat to the citizens of North Carolina. North Carolina ranks among the top 20 states in reported cases of Lyme disease. The Centers for Disease Control (CDC) says that Lyme disease is under reported and that only about 10% of cases that meet CDC surveillance criteria are actually reported to the CDC.

There are two schools of thought on diagnosis and treatment of Lyme disease. The Infections Disease Society of America (IDSA) has authored Lyme guidelines for the Clinical Assessment, Treatment and Prevention of Lyme disease. This document is the accepted guideline for Lyme care conformed to by the general medical community. The treatment guidelines dictate 10-28 days of antibiotic therapy as the cure for this ailment. The IDSA denies that a chronic form of Lyme disease exists, and that those who do not respond to short term antibiotic treatment must be suffering from some other malady. For many Lyme sufferers, short term antibiotic therapy has proven to be ineffective, especially for those people who have suffered from Lyme disease for extended periods of time. There is real proof that short term treatment is not effective in case after case, and some patients have required months of IV and oral antibiotic treatment to be cured.

The Connecticut Attorney General’s office filed suit against the IDSA in 2006 sighting numerous conflicts of interest among the IDSA’s board members. These conflicts included members who were stockholders in pharmaceutical companies and members who held patents for specific Lyme treatments. The IDSA expunged one of its board members when the board member argued that chronic and persistent Lyme disease exists. The board member failed to conform and was removed.

The other school of thought on the treatment and diagnosis of Lyme disease is represented by the International Lyme and Associated Diseases Society (ILADS). The ILADS contends that there is no definitive test for Lyme disease and that a diagnosis should be made based on the patient’s symptoms, a viewpoint supported by the CDC. Furthermore the ILADS states that duration of therapy should be guided by clinical response rather than some arbitrary treatment course (ie 10-28 days)

This issue is very near to me as my wife is currently suffering debilitating symptoms related to Lyme infection. This is a person who was running 3 miles several days a week, six months ago. She is no longer able to walk or use her right arm. She is stricken with horrible muscle spasms, fatigue, and significant weight loss. My 11 year old daughter has also tested positive and is beginning to show symptoms.

My wife attempted to get an appointment with an infectious disease specialist. She was denied because she did not have a positive Lyme test. My wife’s Lyme test results were equivocal, but given her condition and the equivocal test results, an out of state Lyme specialist diagnosed her as having Lyme disease and is treating her with antibiotics. She is currently experiencing measureable improvement.

We took my daughter to another infectious disease doctor, with her positive tests in hand. This doctor disputed her test results and refused to treat here. So we have a person with obvious Lyme disease who can’t get treated because she doesn’t have an unequivocal positive test and we also have a person with an unequivocal positive Lyme test who also cannot get treated. Where are sufferers of this disease supposed to go for treatment?

The primary issue is that the general medical community will not treat this disease aggressively due to reluctance of insurance companies to cover long term Lyme treatment. Treatment beyond the IDSA guidelines garners increased scrutiny that doctors prefer to avoid. Doctors who have treated outside the IDSA guidelines have been called before the North Carolina Medical Board and had their licenses suspended.

Without proper treatment there are many extremely ill people with nowhere to turn. Only those with adequate financial resources and strong support at home have the resources to battle this. In order to get appropriate care, patients are forced to see doctors who operate out of the medical mainstream and do not deal with insurance companies, so called Lyme Literate Medical Doctors (LLMD). There is case after case of people who have been treated by LLMDs who have been cured by long term antibiotic therapy. Their treatment is very effective, but it is a huge financial burden to the infected person since medical insurance pays for very little of the cost.

North Carolina needs legislation that will protect medical providers from punitive actions for treating Lyme sufferers in a manner that is appropriate to their condition. Insurance companies need to be compelled to cover treatment appropriate to cure people of this horrible disease. Finally funding needs to be appropriated for research into more accurate testing methods.

I am requesting your assistance in this manner. Trends show that this issue is only going to get worse. It is extremely unfortunate that innocent people have to suffer when effective treatment is available. Regrettably, doctors who are shackled by insurance companies and inappropriate treatment guidelines are unwilling to help for fear of negative repercussions.

Thanks for your time.

Wandering the Wilderness of Contested Disease

When I first started learning about Lyme disease, I heard lots of stories of people who had difficulty getting proper diagnosis and treatment. I am beginning to understand what all these people have been through. I thought the testing was notoriously insensitive. Then I hear from the regular medical community that the tests produce too many false positives. Which is it? It can't possibly be both.


We got an envelope in the mail earlier in the week. It was from Anna's pediatric physician's practice. Lynette opened it and all that was in it was a copy of Anna's test results from California, wrapped in a blank piece of paper. No letter, no analysis, no offer to assist in her care and treatment. Nothing.


Lynette heard back from Dr. Ntim at Wake Forest University/Baptist Medical Center(WFUBMC). Dr. Ntim talked to a pediatric infectious disease (ID) Dr. about Anna's test results. The ID Dr. said that North Carolina was not a Lyme area and that the tests are notoriously inaccurate.


My mother-in-law has been finding out from friends of hers, of family members and friends, who are stricken with Lyme symptoms, without a definitive diagnosis. She knows another man who was treated with IV antibiotics for a short time and improved, but has since gone back downhill. He is convinced that his problems are not a result of a treatment regimen that was too conservative.


Lynette's been having some vision problems. She is unable to focus on objects due to double vision. We finally figured out from looking at her that one of her eyes was crossed. This is most likely due to nerve issues with the muscles that control her eye. One of our friends heard about Lynette's vision problem and said she new an eye Dr. at WFUBMC who saw this all the time in Lyme patients. He refers them for treatment for Lyme disease with ID Dr's. at WFUBMC. We actually know one person who was treated at WFUBMC for Lyme disease. Based on our experiences, I have to wonder if he was the only one.

We heard from another friend this week who's wife suffered through a "mystery diagnosis" a couple of years ago. They visited 13 Dr's. trying to find somebody to tell them what was wrong with her. They finally found a local ID Dr, Richard Marx, who made a diagnosis that made sense to them. This Dr. could be a possible local resource for us if necessary.


Anna is coming down with an upper respiratory infection. She started complaining of a sore throat yesterday. She had a low grade fever today and she's wiped out. I have no way of knowing whether this is just common childhood disease or manifestation of her Lyme infection.


We sent Anna's test results to an ID Dr. in Burlington who has agreed to see Anna on Tuesday. I am not holding out a lot of hope, but I am hoping that he will at least start Anna on a course of antibiotics. We'll see.


I found a really interesting long format news story on the Internet about Lyme. It's from a local TV station in Boston from this past November. It's kind of a 2o 2o type of feature. It is a great introduction to the whole Lyme diagnosis and treatment controversy. It is about 20 minutes long. Here is the link:

http://www.kettmann.com/Lyme


If you want to stream the video, just click on HERE about 1/2 way down the page. If you want to save it to your hard drive, right click on HERE and click on Save Target As... Save it to your location of choice and then you can watch it whenever you want or share it with others.

Lynette ordered the book written by the lady who is interviewed in this story. I'm looking forward to reading it. The title of this blog post is a quote that the author made in the video.


By now you know that North Carolina is not a Lyme state. I found this interesting document on the NC Department of Health website. It shows incidence of various diseases by county in the state from 2000 to 2005.


http://www.epi.state.nc.us/epi/gcdc/pdf/CDbyCountybyYear2000-2005.pdf


Once the page loads do a find on LYME DIS.


I have seen noticeable improvement in Lynette's condition. She stands up much easier from a sitting position. She can lift her right leg off the ground better which helps her move faster in the walker, get into the stairlift, and get into the bed easier. She still has that crazy happy attitude, which just blows me away.


Anytime something else bad happens around here, I always feel like I'm being picked on. Like we didn't already have enough stuff to deal with right now. Maybe it's just because I'm sailing this ship by myself.


My 18 year old son called me last night around 8:30. I could tell by the tone of his voice that he was very upset. He told me that he had wrecked his car and it was upside down on the side of the road. Fortunately he suffered only cuts and bruises. The car is toast, but Zack is fine. There can't be a better outcome as far as I'm concerned.


Thanks to all of you who are thinking of Lynette. One of our close friends that we have known for a long time came to visit us today. She is such a positive light wherever she goes. We have called on many people for assistance. None of them have turned us down. Thanks y'all.

Lyme Sufferer Shoots and Kills Pastor in Church

A man in Illinois went into a church on Sunday and gunned down the pastor. His parents said he suffered from mental illness brought on by Lyme infection. This is not a common symptom of Lyme disease, but since Lyme can attack your neurological system, it seems believable to me that it could affect someone’s judgment to the point where they didn’t know right from wrong or harbored irrational thoughts. Could this help raise awareness of Lyme disease? It shouldn’t have to come at the expense of an innocent person’s life.

Lynette continues to show gradual improvement. It’s not always obvious, but over a two or three day period you can see changes for the better. I am going out of town the 3rd weekend of March on business. I will miss being here immensely, but I’m looking forward to seeing several days of improvement all at once.

Lynette has another phone consult with Dr. Fishman at the beginning of April. In the meantime she is trying to formulate her strategy to get local care, hopefully from a Lyme sympathetic MD. She’s got a line on 3 different infectious disease doctors. We just hope they aren’t shackled by the status quo. Lynette is trying to hang in there until her appointment with Dr. Jemsek in South Carolina at the end of April.

Dr. Jemsek has an interesting history. He treated HIV/AIDS patients through the 80’s and 90’s. In the beginning most of these patients died. As things progressed in HIV treatment more patients lived. He started attracting Lyme patients because of his reputation of listening, being compassionate, and treating of the person, rather than the patient.

He successfully treated many, many people for Lyme disease. There was an extremely small minority of people who didn’t improve under his care. Some complaints were issued to the NC medical board. When the insurance companies got wind of this, they started denying him payment due to overtreatment. He had to file for bankruptcy when the insurance companies pulled out on him. The state of NC sued him and he was forced to move his practice to Fort Mill, South Carolina.

Here is a link to the remarks that he presented to the North Carolina Medical board during his final appearance. This exposes yet another example of the Lyme ignorance and complacency in the medical community:

http://www.jemsekspecialty.com/ncmb-remarks.php

Lyme disease is named for a town in Connecticut that had an unusual cluster of adolescent arthritis cases in the 70’s. It’s named for its origin, Lyme, CT. It does not belong to the town. It’s Lyme disease, not Lyme’s disease. Or you can just call it Borreliosis.

Lynette Update 2-13-2009

Some of you may not know that Lynette is sick. Others of you may not have heard anything lately. It's been a trying time for all of us and it is hard to keep everybody up on the latest. Hopefully this blog entry will fill in some holes. I know there are a lot of you out there who care about Lynette.

Lynette's symptoms slowly but steadily progressed from about the beginning of October until around the end of January. Her main complaints were numbness and tingling on the right side of her body along with loss of appetite and weight loss.

Although she has seen her family doctor and a neurologist she is not satisfied with their diagnosis which is they say is "consistent with multiple sclerosis". Lynette has done a lot of research in regards to her condition and at this point is pretty much convinced that she has Lyme disease.

She saw her gynecologist some time last month for something totally unrelated. All came out fine from that visit. She shared her story with her gynecologist who asked her if anybody had prescribed her doxycycline, a common Lyme effective antibiotic. As soon as she started taking the medicine her symptoms rapidly increased. She took the doxycycline for 3 days before she decided to have her blood sent out to a lab in California that does the most comprehensive Lyme testing available. After a week off the medicine she had her blood drawn and sent to California. She resumed taking the antibiotics and her condition continued to deteriorate. She has now taken about 10 days worth of antibiotics and her condition seems to have leveled off over the past few days.

It turns out that increase in symptom severity is a normal reaction for Lyme sufferers who are taking antibiotics. The condition is called the Jarisch-Herxheimer reaction. The living bacteria in your body are releasing chemicals in your body that cause damage and invoke damaging responses from your immune system. As you kill these organisms the amount of toxins released is increased. To me, this is a strong indication that it is in fact Lyme disease that Lynette is suffering from.

At this point her right leg is basically paralyzed. She has limited use of her right arm, to the point where she can't write well or use a computer mouse. She can't drive. She is using a walker and wheel chair to get around the house. She has been working some from home but she hasn't been in the office for the last 2 weeks. We are installing a stairlift elavator this weekend to help her get up and down the steps.

Now here is the good news. Through my awesome mother-in-law's persistence, she has gotten Lynette an appointment with a Lyme specialist in Rockville, MD on Monday 2/16. There is a great interview of Dr. Norton Fishman available on the internet:

mms://video.wjla.com/wset/071108-lyme-fishman.wmv
(copy the link and paste it into your browser)

Based on this interview I have a lot of confidence in Dr. Fishman. The interview is kind of long, but it gives you a good idea of the struggle that Lyme patience face.

Many that are unfamiliar with Lyme disease are not aware of the controversy and conflict in the medical community. The "standard" medical community employs testing that is neither complete nor comprehensive. Insurance companies only pay for certain tests, won't approve referrals to specialists without a positive test, limit the duration of anti-biotic treatments even when it is clear that more treatment is necessary. Even the CDC says that a person with a negative Lyme test may still have Lyme disease and the diagnosis must be of clinical nature rather than a laboratory diagnosis.

What this means for Lyme sufferers is lots of run around, Dr.'s telling them its all in there head, or they have MS, fibromyalgia, lupus, etc. It also means that you have to have some money to get treatment because the insurance companies don't think you are sick so they won't cover you.

Beverly has been in touch with the Dr. Fishman's wife and Mrs. Fishman has indicated that Lynette will be treated as soon as they can consult with her and observer her condition. This most likely means that Lynette will have a picc line installed and have a couple of months of IV antibiotic treatment followed by year of oral antibiotics.

Many people suffer from this disease for years and years before receiving a proper diagnosis. While Lynette's symptoms seem rather severe, the fact that she will begin treatment soon offers the prospect of a full recovery.

The most amazing thing about this is Lynette's attitude. Of course she gets down and depressed, but for the most part she is the same old Lynette, cheery and smiling. You wouldn't want to be around me if I was the sick one.

Lynette is rather self conscious about her condition and does not want a lot of attention. We have had lots of offers of assistance from many of our friends and family. We really appreciate all of this.

Please keep Lynette in your thoughts.

Lynette Update 2-17-2009

I talked to Lynette this afternoon after her visit with Dr. Fishman.

I think we were all hoping for a miracle cure, but I don't think we can expect rapid results. He ordered more tests, some from the same lab in California that Lynette sent her blood. And more tests from a lab in Arizona which is also considered one of the most Lyme literate labs.

Dr. Fishman prescribed Lynette a different oral antibiotic. He did not want to put her on IV antibiotics due to the reaction that she had to the oral doxycycline. He will have her take this antibiotic for a few weeks and then reevaluate.

The doctor called her neuropathy Multiple Sclerosis. This upset Lynette. She has a militant attitude against an MS diagnosis for some reason. It is my opinion that MS is caused by some pathogen in the victims body that is invoking an immune response that causes the nerve damage associated with MS. Something in your body has to fire up your immune system to the point that it's starts eating at the protective sheath on your nerves. I think that some undetected pathogen would best explain the situation. When I saw the interview of Dr. Fishman, I was pleasantly surprised to see him make a similar statement.

The doctor's office is going to try to get in touch with iGeneX (lab in CA) tomorrow and see if the can get the results from Lynette's labs. Lynette may come home tomorrow or Wednesday, based on whether they can get the results or not.

He gave her a prescription for a muscle relaxer to deal with the spasms she's been having in her leg. Lynette is afraid that it will counteract with the antibiotic. I don't think it would be prescribed if it would interact. They are 2 totally different kinds of medicine. But, Lynette has never been one to take much medicine. I think that's going to change soon.

Dr. Fishman gave Lynette and Beverly a shopping list of supplements that will help Lynette. He is a certified nutritionist. I totally believe that the proper diet is beneficial and the supplements will give Lynette a good charge of beneficial substances. Tomorrow she is going to get an IV vitamin treatment called a Myers Push or Myers Cocktail. It's supposed to have all kinds of great side affects: increased energy, better mood, spontaneous orgasm!

Lynette will get a phone call from Dr. Fishman in a couple of weeks for a "phone consultation appointment". I guess that's the next time that we will have anything new to share.

Thanks for all the love from everybody. We know you all care and that's why we are letting you know what's going on. I'm getting good at asking people for help. So be prepared. I might hit you up!

Sorry for all the typos I didn't find. I know you'll be able to figure out the message.

Lynette Update 2-24-2009

Lynette has an amazing spirit. She smiles every time I walk in the room. She has so much hope and faith. I guess it's just as it was when she wasn't sick. Lynette always has the best attitude.

Her Lyme doctor told her that they needed to sneak up on this thing. So he didn't prescribe her any strong medicine. He wrote her a prescription for an oral antibiotic. He told her to take one antibiotic per day. He said if she could tolerate it she could take two per day. She started taking 2 the second day and hasn't shown any ill effects.

Dr. Fishman prescribed her 6 different supplements. They are intended to help with inflammation, immune system, brain and nerve health, and muscle cramps. She has made some marginal improvement over the last few days. I am hoping that this is part of the progression to better health for Lynette.

She received her Low Dose Naltrexone prescription in the mail today. This drug in higher doses has been used for the last 25 years to treat people with alcohol and opiate addiction. It works by somehow interfering with the brain chemistry. About 3 years ago there were some studies done that showed remarkable improvement in people with nerve damage who took low doses of this drug. The pharm companies aren't promoting it because the patent has run out and they won't make any money off of it. You can't even purchase this drug in the dosage that is prescribed. You have to use a formulating pharmacy that will repackage the drug in the proper dosage.

It has been so wonderful to have so much love come our way from all of our friends and family. Lynette's mom has been indispensable. My mom came to stay this past weekend so I could take Anna to an all day volleyball tournament on Saturday. Lynette's brother and sister-in-law have graciously volunteered to stay with Lynette during the day for the next few days so that I can go to work. Our neighbor is filling the gap tomorrow evening while I go visit a friend who's wife recently passed away. Hope's mom made some wonderful food for us last week and Hope brought it over. One of Lynette's friend's has been taking Anna to school a couple of times a week. We are so lucky to have all of you.

Lynette Update 2-28-2009

Lynette has shown minor improvement over the past few days. She is standing from a sitting position easier and she is lifting her right leg a little better. Nothing earth shattering, but everybody who's been around her has noticed. The Low Dose Naltrexone(LDN) came in the mail on Monday and she has been taking that daily. I'm not sure if her improvement is from the LDN or the host of other things she is taking. She is still in pretty bad shape, but we are hoping that any improvement is the beginning of a trend.

Lynette's brother Tim and his wife Jonna spent Tuesday, Wednesday, and Thursday with Lynette. They took her to the mall on Wednesday. Tim rode in the wheel chair while Jonna pushed him. Lynette walked in her walker and challenged other walker users to races. She beat some, but not others.

Lynette and Anna's results came back from IGenEx in California. Before I say anything about the results, I think I need to state some disclaimers. Lyme tests are notoriously inaccurate. This is mainly because the Lyme bacteria does a great job of disguising itself. That's why a Lyme diagnosis needs to be based on clinical evidence and not solely laboratory evidence. There are many negative lab results for people who have Lyme disease. This also makes me skeptical about positive results. Furthermore Lynette and I are obviously not qualified to thoroughly and accurately analyze the results of these tests. She will discuss the results of the tests via phone with her Lyme Dr. on Wednesday. Regardless of test results, I do believe that Lynette has Lyme disease solely based on the reaction that she had to the Doxycycline antibiotic therapy.

There were a wide array of tests performed. Most of them were for Lyme disease, but there were others that were performed to detect other tick borne ailments that are not uncommon in Lyme sufferers. Most of these tests have 3 possible results: Negative, indeterminant, and positive. Based on our interpretation of the tests, Anna tested positive for Lyme disease on the Western Blot IgM test and positive for Babesia Duncani. Lynette was indeterminate for the same Lyme test that Anna was positive for, and showed an even more positive result for Babesia Duncani. Lynette's doctor has said that he is willing to review Anna's test results.

We continue to be humbled by all of the support from our friends and family. Ty and Stephanie brought us a weeks worth of food today. Tim and Jonna stopped by again today. Jonna did some physical therapy for Lynette which is greatly needed and appreciated.

We all have a positive attitude about this. Lynette is a strong woman and she is not going to let this beat her. We are going to give her all of the support and love she needs.

Please feel free to share this information with anyone who cares about Lynette. I believe that nothing but good can come from the concern, love and interest from others.

Lynette Update 3-05-2009

I told Lynette tonight that one of her biggest allies is her smile. How she can still smile all the time, with the burden she bears, just blows me away. I can't imagine what this would do to her if she didn't possess the positive attitude and fighting spirit that she has.

Lynette has shown some slow but steady improvement. Most of you that haven't seen her since she got sick would be blown away by her condition. I don't even see the daily improvements because they are gradual. I told Lynette it's like watching your kids grow. It happens, but you don't notice. Visitors who haven't seen her in a week or two have commented on her improvement.

Lynette had a phone consult with her Lyme doctor, Dr. Fishman yesterday evening. Beverly and I were there eavesdropping through the whole conversation since Lynette had him on speaker phone. He gave us his opinion of Lynette's IGeneX tests. He said that he could say that Lynette was positive for Lyme disease based on his knowledge of how to interpret these tests. He also said that she was borderline positive for babesia. He also told us that a test that he had ordered for another pathogen was positive.

This one is called Ehrlichia. It is also a tick borne illness. Based on my research this one doesn't bother me much. I don't think Lynette is showing symptoms from this bacteria. Also, this infection is not a big concern because it is treated with the same therapies as Lyme disease. It is more harmful to people with compromised immune systems, such as AIDS patients.

Dr. Fishman seemed to encourage Lynette to seek care from a local doctor. He was surprised that she is not being treated by anyone else. Dr. Fishman is going to send Lynette his report concerning the analysis of her test results. He encouraged her to take this to a local doctor who may (hopefully) agree with the results and continue and monitor her treatment.

Dr. Fishman prescribed Lynette another antibiotic to take in conjunction with the one she is already taking. He also told her to take another probiotic along with the acidophilus that she is already taking. These supplements help replace the beneficial bacteria that live in your digestive system that get wiped out by the antibiotics.

Lynette's doctor also had Anna's test results on hand and talked to us about them. He said that she was unequivocally infected and should get treatment as soon as possible. One of Anna's classmate's father is a cardiologist at Wake Forest/Baptist Medical Center. In the past he has pledged to Lynette to do anything he can do to help. We think he can hook us up with an infectious disease doctor who will treat Anna because she has undeniable positive tests.

Anna's friend's dad (Dr. Ntim) may also be able to help Lynette. We'll give him Dr. Fishman's report when we get it and see if we can get any support. Lynette also has a line on an infectious disease doctor in Burlington that her mom has connections with. The eventual plan is for Lynette to transfer to a Lyme Literate MD (LLMD) in Fort Mill, SC. He has a similar approach to Lyme treatment as Dr. Fishman. She scheduled an appointment with him 2 or 3 weeks ago. The appointment is not until April 30, our 15th wedding anniversary.

I ordered my test kit from IGeneX today. There is some feeling in the medical community that these types of diseases can be sexually transmitted. At least I know what to get tested for. Anna doesn't need to be tested for Ehrlichia because the treatment that she will get for the Lyme infection will cure the Ehrlichia if she has it. I on the other hand have to be tested for Ehrlichia because the potential exists that it is the only one that I have, if I have any of these.

We had to get rid of our water bed because Lynette couldn't get in and out of it. While my sister was here this past weekend helping out, I went out and purchased a new bed. Later that day some of our friends came over with an envelope full of money that they had collected from all of our friends. It paid for the bed we needed.

More food and friends continue to show up at our house. We appreciate all of the love and concern that all or our friends and family continue to show us.