Monday, May 25, 2009

News and Links

One of the 29 lab tests that Lynette had exposed a hormonal imbalance. Her doctor suspected pituitary gland involvement. The pituitary gland is buried deep in your brain. A place that borrelia have been known to frequent. Dr. Jemsek sent Lynette for an MRI of her pituitary gland. It's not uncommon for people with neurological manifestations of Lyme disease to have this issue. The MRI was to confirm that the Lyme disease was the cause of the pituitary issue, rather than something else like menopause. Dr. Jemsek seems to have Lynette on the way to IV antibiotic treatment within the next couple of weeks. The pituitary involvement seems to be one of his motivations.

Does any of this sound a little scary? Lynette continues to surprise all of us. She's been out with the girls several times. Of course we had Anna's birthday party on Saturday at Tanglewood. I tried my best to be as unavailable as possible. Lynette was there the whole time crackin' the whip! We are so appreciative of her progress and we frequently mention how different it was just 2 or 3 months ago. We are so lucky to be where we are right now.

I've found a few interesting Lyme links recently.

Sunday afternoon I was listening to the People's Pharmacy on NPR. The show was just ending and they announced the name and the credentials of their last guest as they were signing off. This guy was a Fibromyalgia and Chronic Fatigue specialist. These two ailments are common misdiagnoses for Lyme patients. I went to his website to see if I could find out what his stance on Lyme was. I found this very interesting blog entry about his dissatisfaction with the horrible inaccuracies of current Lyme testing:

Dr. Kelly Clark is an epidemiologist at the University of North Florida in Jacksonville. He is doing some heavy duty research on Lyme disease. He has developed testing methods that appear to be more sensitive than the standard testing today. His tactics really seems to make a lot of sense.

Thursday, May 21, 2009

A Call to Action

I have managed to get myself subscribed to a few Lyme disease related mailing lists. Some of the information I receive is very informative. Some of it is way over my head and some of it is Lyme 101. I think I've advanced to the 3 or 4oo hundred level stuff by now.

One guy who has me on his list is Dave Tierney. From what I've figured out, Dave is a North Carolina resident who has Lyme disease. There is a picture on the wall at Dr. Jemsek's office with Dave it in. Apparently Dave is (was?) a pilot for US Air. I believe his illness has kept him from working in the past. He seems very focused in his advocacy and he lives in our state!

Dave is asking folks to email or call their North Carolina state governmental representatives concerning proposed budget cuts by the North Carolina Senate. The Senate is proposing cutting $140,000 from the Department of Public Health's budget that is intended for tick studies. I have sent an email to my local representation, as well as the head of the NC Department of Public Health, Dr. Jeffrey Engel, who by the way is no friend of Lyme sufferers.

Both the letters I sent are similar, so I'm going to include the copy that I sent to my state representatives, Pete Brunstetter and Bill McGee. I also ask that you contact your representation if you are so inclined.

If you live in North Carolina and wish to know who your representatives are, go to this website:

Scroll about half way down on the right side until you see "Who Represents Me?". Enter your 9 digit zip code. There's a link there if you don't know your 9-digit zip. You can check your junk snail mail, catalogs and magazines for your 9-digit zip. It's usually on the label for those. After entering your zip, you can click on the link for each of your representatives you will get details for them including their email address.

Here is the contact information for the Director of the North Carolina Department of Public Health. He doesn't provide an email address:

State Health Director
Dr. Jeffrey P. Engel
Division of Public Health
1931 Mail Service Center
Raleigh, North Carolina 27699-1931

Just a Little more information before the letter. Here are the links to a couple of articles that Dave sent. I used of the information in them to compose my letters:

N.C. in denial on Lyme disease?

N.C. budget cuts threaten tick studies

Dear Mr. Brunstetter and Mr. McGee:

The state of North Carolina leads the nation in the number of reported cases of Rocky Mountain Spotted Fever. Incidence of other tick borne illnesses including Borrelia, Babesia, Bartonella and Ehrlichia, is on the rise in our state. These illnesses have a devastating impact on the lives of the infected and their families. Some of the symptoms of these illnesses can cause such extreme disability that the person who is sick can no longer go to work or school, drive a car, or take care of their families. In some cases these diseases result in death.

There is money in the North Carolina state budget that has been designated for studying the danger that tick borne infections pose to the state of North Carolina. The senate is proposing eliminating $140,000 of this funding. Some of this money is intended to be used to analyze 2600 ticks that were collected last year to understand their infection rates.

I understand that these are hard economic times for our state and our nation. We all need to tighten our belts, at home and in our capitals. According to estimates by the US Census Bureau, the current population of North Carolina is 9,222,414. The amount of money being cut from the budget represents about 1.5 cents for every person in North Carolina for a year. To the citizens of North Carolina this is nothing. To those who suffer from tick borne illnesses this amount of money is very significant. This money can help us move toward a future where these illnesses are better understood and proper diagnosis and treatment are more readily available.

North Carolina State Health Director Dr. Jeffrey Engel, in regard to Lyme disease, has been quoted as saying, "There is nothing on our side that is resistant to reporting and understanding Lyme disease here. But we can only go by science." Eliminating these funds from our state budget blocks the science that we need to better understand the growing problem of tick borne illnesses in North Carolina.

I respectfully request that you do everything under your power to help maintain this funding in our state budget.

Thank you,

Shaun Funk

Monday, May 18, 2009

Good Riddance!

We went to the Lyme Rally in Columbia, SC on Thursday. It was very calm. No one was chanting or waving signs or banners. There was no tear gas, no pot smoking hippies. It was very civilized.

I enjoy the speakers. They included the Lieutenant Governor of South Carolina, along with a couple of folks from a Lyme advocacy group in Greenville, SC. One of them was a preacher from Loris, SC named Scott Seckman who has Lyme. He was quite entertaining. The guest speaker was a tick infection doctor from Naples, FL. He has written over 25 books about Lyme disease and other tick borne illnesses. He is a working physician who treats patients.

The primary message that I got by listening to this Dr. Schaller is that every patient is different. Some patients have Lyme, Bartonella and Ehrlicia. Some patients have Bartonella and Babesia but no Lyme but they may have grown up in an area with a lot of industrial chemical plants. Other's may have a genetic predisposition for digestive issues or allergies or sensitivities to fragrances or cleaning products. A tick borne illness may tip their health over the edge.

Each of these people require individual care focused on the health issues they are experiencing. Many of these people have some degree of immune system dysfunction. They can have hormonal imbalances. They can have organ dysfunction. They need specific applied treatment for their condition. It's impossible that some panel of "experts" can say that you'll be cured with 10 to 28 days of oral antibiotics. That viewpoint is much to simplistic.

There is so much medical science to dispute the one size fits all treatment for Lyme and other tick borne illnesses. But the word needs to get out to the public that the IDSA is blocking the science. I continue to hear news of more challenges submitted in opposition to the current IDSA guidelines. According the settlement reached in the Connecticut Attorney General's anti-trust case against the IDSA, the IDSA has agreed to have their guidelines reviewed and rewritten by a panel who holds no financial interest in the outcome of the review. I have a lot of hope in the outcome of this case.

We spent yesterday evening in Burlington. My mother in law Beverly arranged a showing of Under Our Skin at her church. There wasn't a big crowd, but I am happy to see more people exposed to this issue even if it is just a hand full at a time. We had a few minutes of discussion after the showing of the movie. Lynette, Beverly and I know a lot about this stuff and we can answer a lot of questions!

The best part of the visit to Burlington was was the booty we had in the trunk of Lynette's car. The contents included a toilet seat with handles and a bucket, a shower seat, a collapsible walker and a four footed cane. It was a challenge to get them all to fit in the trunk of the car. It was a blessing to leave them behind.

Good riddance!

Tuesday, May 12, 2009

Time Flies When You're Having Fun

It has been a harsh winter at our home. Our memories of this winter will last long in our minds. Memories of the struggles that we have faced and the conquests we have achieved will be slow to fade. Let these days be a great lesson in reminding us how lucky we have been in our lives, and how blessed we continue to be. I hope everyone can see the good fortune in their lives and realize how lucky they are. None of us should ever take for granted all the blessings that we have.

We took Anna down to Dr. Jemsek's office yesterday. Dr. J has hired a PA to assist him in seeing more patients at his practice. Dr. J has been open in Fort Mill for 16 months, and already there is a 4-5 month waiting period for a first appointment.

Anna saw the PA who's name is Anne. Anne also is infected with Lyme and is one of Dr. J's patients. She also works for a doctor in Asheville who is a Lyme Literate MD. Anne is now splitting her time between Fort Mill and Asheville.

The visit was comfortable and comprehensive. In the end Anna was prescribed 3 antibiotics. Each medicine targets a different form of the Lyme bacteria. The medicine will be administered on a pulsed dosage. This seems to be a standard Jemsek protocol. Starting next week, Anna will take the antibiotics on Monday, Wednesday and Friday for 3 weeks. Then she'll take a week off.

This therapy schedule addresses two issues. The first issue of antibiotic toxicity is addressed by not taking the medicine day after day. The 4th week off is to trick the borrelia. The Lyme bacteria has the ability to go dormant and hide when the environment is not suitable for it, such as during antibiotic treatment. The borrelia will come out to play when the antibiotics stop.

The whole cycle starts again after the week of no antibiotics. The borrelia should become active again and thus will be vulnerable to the antibiotic treatment. There is one other drug that Anna will take in the third week that addresses yet another form of borrelia.

While we were at Dr. Jemsek's, we took care of some business for Lynette. She made sure to arrange to have her disability claim filled out so that she can continue to receive her benefit. She also talked to a nurse who discussed a couple of Lynette's lab results with her. Lynette got a Vitamin D prescription for a noted deficiency. Lynette likes this pill. You only take it once a week.

The nurse also said that a hormonal imbalance had been noted in Lynette's labs. In Lyme sufferers this often indicates pituitary gland involvement. In middle aged women it can be an indication of menopause. Dr. Jemsek ordered a brain MRI with pituitary view for Lynette. They will want to show that tissue damage around the pituitary is the cause of the hormonal imbalance. The treatment is hormone replacement therapy (HRT). Eventually Lynette's body will heal itself and the HRT will no longer be needed. In the mean time it can help with her metabolism, stamina, and mood.

Lynette is walking freely now. Her gait is still encumbered by her ailment, but she no longer needs support. The little things like standing to take a shower and being able to folding a towel are major milestones here. Her right hand has been the slowest thing to respond. Tonight I watched her try to open the car door from the outside . That hand still doesn't want to cooperate.

Dr. Jemsek suggested that Lynette go on a gluten free diet. I think he's a big fan of this too. This means no wheat products. That's right, no bread and no pasta. We love pasta and sandwiches and french bread and flour tortillas. But we'll get by. We've been experimenting with a few gluten free products such as crackers and pasta.

We are excited to be going to the Lyme Rally in Columbia, SC on Thursday morning. I've heard that there are several of my family members that will be joining us. We will all have on our Lyme green shirts.

We had Chinese food the other night. My fortune said: "Someone is speaking well of you." I thought it was y'all. Lynette said it was her. Thanks.

Tuesday, May 5, 2009

We Love eBay and House Cleaning

Last night while I was performing some sort of domestic task in the kitchen, I noticed that our white porcelain sink was once again marred with streaks of stainless steel and aluminum. I get so tired of cleaning it. Last night though, I saw something that will make me never want to wash my sink again. In this sink was an image. An image so strange and powerful that it consumes people. An image that makes smart men lose their judgement. An image that dictates that our saviours are persecuted. It was an image of borrelia burgdoferi, the spirochetal bacteria responsible for Lyme disease.
I'm thinking about removing my sink and putting it on eBay.
Before I left for work this morning I dragged the laundry hamper down the stairs and the vacuum cleaner up the stairs. When I got home the laundry was done and folded and the bedroom had been vacuumed. Oh yeah, the dishwasher had been emptied too. She's starting to make a good housekeeper again!
(sorry for all the -------- seem to be having problems with line feeds tonight)