Your New Treatment Protocol

"take this more often"..."don't take this"..."take this instead"..."keep taking this"..."but only take it 3 days in a row each week"..."oh yeah, take these on the same 3 day schedule too"..."but take them 2 hours before or after the other ones"..."take this drug twice a day on Thursday June 4 and Friday June 5"(i'm not kidding)..."take 4 times as much of this one"..."take all these new supplements too"..."go to LabCorp and get blood drawn for these tests"..."your doctor has ordered 29 tests"..."we will need to draw 19 tubes of blood"..."do you know how much this is going to cost?"..."we're almost done. this is the last tube"..."oh, she's fainting".......................

It was a big day today. We stayed at a hotel near Carowinds last night. We woke up around 6:00 and got ready to go get some breakfast and go see Dr. Jemsek. We got to his office just after 8:00 for an 8:30 appointment. We spent about 3 hours there seeing everyone. Dr. Jemsek's feeling was that Lynette could not be in the condition that she is only having been infected since September. He didn't think it was possible for her brain lesions (indicated on MRI) to develop that quickly. He suspects she may have had a dormant infection for some time that just happened to show up when the symptoms flared.

Dr. J's strategy is all about pulsed therapy. There are a lot of different antibiotics. They all come with a host of efficacies and tolerabilities. Some of them can cause a lot of harm to the people who are taking them. Pulsed therapy moderates constant intake of antibiotic drugs. Instead you take them for a few days, then you stop for a few days. There is a lot of evidence that this therapy has many benefits.

One of the downsides to taking antibiotics on any schedule is that that the antibiotics kill much of the desired flora in your digestive system. You have to take probiotic supplements in order to replenish this desirable bacteria. It doesn't make sense to take the antibiotics and probiotics at the same time. Dr. Jemsek pointed that out to us today. If Lynette only takes the antibiotics and probitics 3 days a week, we can save a few coins those other 4 days.

The most popular IV antibiotic for Lyme can cause gall bladder disease. There is a crystaline metabolyte that builds up in the gall bladder of people who are taking Rocephin. If you aren't taking this medicine every day, you don't get the gall stones that happen occasionally to people who take this drug. This is another side affect is moderated with pulse therapy.

Dr. Jemsek was mostly in agreement with Dr. Fishman's treatment protocol for Lynette. He prescribed some different supplements and told us to increase others that Lynette was already taking. He also prescribed another drug which is an antibiotic, called Flagella. It seems to have a different mechanism than regular antibiotics. I don't understand how it works. I'll have to do more research on it.

Dr. J ordered a bunch of laboratory tests for Lynette. We came back to Winston-Salem with the order form and went to the local LabCorp facility. The lady that processed our order was pretty amazed that 29 tests had been ordered. The analysis that their system performed said the tests would require 19 tubes of blood. The first 5 came out of the left arm but it decided to stop producing. They put a needle in the right arm for the rest of the tubes. They got to the last one and Lynette said, "I need some Pepsi." I went to get a soft drink out of the vending machine. By the time I got back she had fainted and was back to reality.

In about 4 weeks or so, the next time Lynette sees Dr. Jemsek, he thinks she will probably be ready for IV antibiotic therapy. He uses a hospital in North Carolina, close to his old practice, that inserts the PICC lines. He spoke very highly of them. Even the IV antibiotic therapy will be pulsed. He suggested 5 months as an appropriate therapy. Lynette and I were both surprised because we expected something shorter.

Lynette really did well through the whole trip. We ate with Lauren and Danielle on the way down at Lauren's Olive Garden at Concord Mills. We entered and exited a hotel, including taking a shower. We visited the Doctor for 3 hours, had lunch in Uptown Charlotte where she had to walk 3 blocks between the parking deck and the restaurant, and came back to Winston for the whole LabCorp ordeal. She really is getting a lot more mobile.

Dr. J is adding a PA to his practice who is in agreement with his diagnosis and treatment philosophy. The PA is starting very soon and we were able to get Anna an appointment on May 11. Dr. J had a visiting physician from Wisconsin (Lyme endemic area) who was observing Dr. J's MO. We had Anna's IGeneX labs with us. He asked to see them. His conclusion based on him seeing Anna in his presence was that she would respond well to oral antibiotics.

Happy 15th Anniversary Lynette

Why?

Why are insurance companies in a position where they can control what treatment regimen is sanctioned for a patient? Isn't it the physician's duty to determine what the best course of treatment is for his patient? It should be the insurance company's job to cover the cost of the treatment without it's interference in the diagnosis and treatment of the insured. Isn't that what the insured is supposed to receive for payment of their premiums?

Why are medical treatment guidelines written by panelists who are academicians and not practicing clinicians? The doctors who are treating patients have hands on experience with their subjects' responses to various therapies. The guideline authors have no idea what treatments are effective, because they are not recommending, administering, nor observing the effects of these treatments.

Why is long term antibiotic therapy such a horrible treatment for those infected with Lyme disease? Long term antibiotic use is extremely common in treatment for acne, COPD, gingivitis, and kidney disease. My son Zack took minocycline daily as an acne treatment. Right now Lynette is taking the exact same drug, in the exact same dose, as Zack did. Why is it so much worse for Lynette to take it?

Why does the medical community conform to guidelines written by people who have the potential to profit from these guidelines? Most of the authors of the standard guidelines for the diagnosis and treatment of Lyme disease have been shown to have conflicts of interest. The Attorney General of the state of Connecticut filed suit against them for this reason. 88% of the authors are affiliated with vaccine manufacturers, pharmaceutical companies, test kit manufacturers, and/or hold various Lyme related patents. Their decisions with regard to the treatment and diagnosis guidelines are poisoned by their financial interests in Lyme related products and procedures that represent a potential financial gain for them.

I know y'all want to hear about Lynette. She is amazing. We have been walking on our street as therapy since she has been able to do so. We have progressed through various stages of assistance: wheel chair, walker, cane, my left arm, moving down the street to the first corner and sometimes the second corner.

Prior to our walk tonight Lynette was waiting for me at the top of our driveway. Most of you who have been to our house know that our driveway is treacherously steep. Lynette said she wanted to walk to the first corner and back without the cane. We walked down the street as I kept hassling her about hanging on to my arm too tight. Before we knew it, we were on our way to the next corner. When we got back she walked down the driveway with my help.

Why is Lynette getting better? Because she is being treated by very brave physicians who are willing to risk their lively hoods for the benefit of their patients. Because she is one tough chick who is not going to let this beat her!

I Know How You Feel

A phrase that is frequently offered as a sort of condolence to someone who has hit a hard patch in their life is, "I know how you feel". As consoling as this is, most of the time it is probably not true. You really don't know how a particular set of circumstances feels until you have experienced them.

The first thing that people who haven't talked to Lynette in a while ask is, "How are you doing?" Lynette got really tired of answering this question when things were not going in the right direction. Now that she's getting better, it doesn't seem to bother her too much. Even though, when someone does ask her this question, she responds in the cheeriest tone, "Doin' great!"

There is a multitude of reactions to our situation, both within our home and from our friends and family. It is amazing all of the support we have received from all of you. At home, this experience has strenthened our relationship. We have come to appreciate some of the qualities in each other that we had not seen a lot of in the past: perseverence, dedication. Lynette is possessed with the most positive attitude you could imagine. It's hard not to love that.

Doing the Dishes

The standard routine has always been that I cook supper and Lynette cleans up the huge mess that I make. Of course I've been doing both jobs now for a couple of months. I took this great picture of Lynette the other day. Granted she wasn't cleaning up my huge mess, but it's a step in the right direction.

Lynette's condition has continued to improve. She hasn't used the walker since the last update. You can see the cane to her left in the photo. That's getting her by now.

Lynette stayed home by herself this morning for the first time. One of her good friends from Hanesbrands, Michelle, came by with lunch. Then she took Lynette back to Hanesbrands so Lynette could visit with her co-workers. She had a great time seeing all of her friends at work. Another of Lynette's co-workers, Lyn, has a daughter on Anna's volleyball team. Lyn brought Lynette to Anna's school for a volleyball match today. Lynette really enjoyed seeing several of her First Assembly friends this evening.

We are looking forward to Lynette's visit with Dr. Jemsek next week. My mother-in-law Beverly and Anna will be accompanying us. The appointment is early on Thursday so we are staying in a hotel near Carowinds Wednesday night.

A Lyme rally is being held Thursday May 14th on the South Carolina State House North Grounds. The Governor has declared May 2009 Lyme Disease Awareness Month. The Lieutenant Governor is slated to speak. I think I read somewhere that a "Lyme Doctor" will also be speaking. I would be very surprised if it wasn't Dr. Jemsek.

Thanks again to everybody that has been helping us through these tough times. We want you to know how appreciative we are.

She is Risen

Spring is a time of renewal, rejuvenation and rebirth. One of Lynette's coworkers sent Lynette a message that referenced the period of Lent as a period of suffering and that things improve with the Resurrection.

Tonight Lynette was getting ready to go upstairs for the night. Anna encouraged her to walk the steps instead of taking the stair lift. Anna rode the stair lift and Lynette climbed the stairs. Lynette was actually faster than the stair lift. She had to wait on it.

When she got to the top of the steps, she left the walker behind and stepped across the hall. Then she walked into the bedroom to the bed. She walked into the bathroom. She has an office chair that she uses in the bathroom when she dries her hair. She came walking out of the bathroom pushing this thing across the bedroom.

She is Risen

Struggles Continuing Amidst Lyme Wars

Please read this article. This is one of the better ones I've read. It does a really good job of talking about all the issues surrounding Lyme:

http://charlotte.rhinotimes.com/Articles-i-2007-09-27-163826.112113-Struggles_ContinuingAmidst_Lyme_Wars.html

Who has Lyme?

Lynette spoke with Dr. Fishman on Friday. I was planning on being home when he called, but he called early and I was away. He prescribed her an anti-malarial drug to combat the babesia infection. She has been taking it for a few days and hasn't shown any ill effects or improvements.

She carried her walker around the living room tonight without using it. She was a little shaky but she was smiling the whole time. It's great to see Lynette's recovery continue.

I got my test results on Tuesday. They were negative. Yay!

I have heard many anecdotes from friends and family of various people suffering from Lyme. I sent out an email today, mostly to my North Carolina folks, asking them to give me the names and home towns of everybody they know who has had or suspects they may have Lyme disease. I want some evidence that North Carolina is not a Lyme state.

My dad responded to my email that the only person he knew with Lyme was someone Lynette and I already knew about. I responded with the following email. It summarizes my current feelings based on some recent research I've done.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I figured that Ron was the only person you knew with Lyme. I saw a local TV stations news video from Maryland about the increase of Lyme in their state. I thought it would be good to know if you knew anybody from VA with Lyme. It's probably coming this way from up there. I'm mostly trying to get a list of people from NC who are affected. I have already heard about 6 or 7 people who've had Lyme disease.

I read a very interesting paper written by a Houston family practice doctor about patients with Lyme like disease that's not detectable by standard tests. We are finding out more and more about Southern Lyme which is a tick borne illness which is very similar, but not the same as Borrelia burgdorferi. It causes many of the same issues, but does not register on the standard tests. Ticks who carry this version of Borrelia, also carry ehrlichia which Lynette has also tested positive for. I think this explains her condition and her questionable Lyme test results.

Furthermore we have learned about Borrelia infections that cause rashes that disappear without treatment. Many people who have these symptoms never again have any other symptoms related to Lyme disease. We also know that there are Lyme infections which never present the rash. The government contends that the rash is a slam dunk diagnosis of Lyme disease. Now their theories are destroyed by rash disease that have no other symptoms.

It is amazing the stubbornness and abstinence of these people who can change this situation. There is SO much science to dispute the currently accepted guidelines of treatment.

Good News

Lynette's condition continues to improve. She is taking all of this stuff and we have to assume that some of this stuff is the reason why:

Ultra InflamX 360 Medical Food, IgG 2000 DF Immunoglobin Formula, Minocycline, Cefuroxime Axetil, Naltrexone, Skelaxin, CoQMax, Perque Magnesium, Acetyl L-Carnitine
Omega Pure 600 Fish Oil, Florastor, Acidophilus
Kyolic Garlic, Vitamin C

Lynette is now motoring around the house with her walker, unsupervised. Her right leg is not resisting her desires as much as it has recently. We took her out on Friday afternoon and when we got home she walked up the steps from the garage, alternating feet and steps. Not too long ago somebody was behind her helping her right foot up each single step. Some of her symptoms have disappeared. She had leg twitches at her lowest point that were only around for a week or so. Swelling and coldness in her lower legs has subsided. I noticed tonight that her vision is improving. She hasn't been winking at me all night. She's gotten her sex drive back too!

We are looking forward to Lynette's phone consult with Dr. Fishman on Friday. This will likely be the last time we speak with him for a while. I don't expect any big changes in Lynette's treatment. That will happen at the end of the month when we visit Dr. Jemsek.

I have heard a lot of positive news in the last week or so advancing Lyme treatment and diagnosis standards.

Without debate, the Connecticut Legislative Committee on Public Health approved legislation that protects doctors who treat Lyme diagnosed patients with long term antibiotics. The bill gives doctors the right diagnose chronic Lyme disease and treat with long term antibiotics without fear of reprisal by the state.

http://www.newstimes.com/ci_12005818

In what I am calling the Volkman smackdown, David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook has submitted a letter to the IDSA pointing out all the inadequacies of their current approach. To read the letter, go to this link, and then scroll to the bottom and click on the link next to Download Attachment.

http://www.lymedisease.org/news/lymepolicywonk/82.html

One more little bit of commentary from me. I've come to the conclusion that the changes that are needed in diagnosis and treatment of Lyme disease have the best chance of being promoted by two parties: Patients and scientists.

Insurance companies don't need a change. Every new disease they have to pay for treatment for hurts their bottom line. The doctors can't change. They are just pawns in an awfully orchestrated program. They have no latitude to be creative or inventive. They have to follow a formula or they will stop getting checks from the insurance companies.

Science is the best way to solve the problem, because physical proof is indisputable. The more this issue is studied, the better the information that will be available. Unfortunately scientific studies take funding, and Lyme isn't exactly on everybody's radar screen. We need to encourage various levels of our government to fund research on this disease.

The patients hold a lot of power, but it is hard to harness. They talk to the doctors constantly. They can convey their concerns, express the issues they are dealing with. They are the largest constituency in this fight. They can communicate with their government representation. They can hold conferences and find outlets in the press to get the word out. But they have to speak up.
Obviously I am deeply concerned about this whole Lyme situation, but I am beginning to see that this is a problem endemic in our health care establishment. I read a great article from a widely accessible media outlet today discussing the influence of drug companies on physicians. It includes mention of treatment guidelines authored by panels with connections to the drug companies that are the law of the land for practitioners. Check it out here:

http://www.msnbc.msn.com/id/29993854/