Looking back at where we have been...

I  took a look at our caring bridge site tonight and saw my last note. It was dated early 2009 and I noted that in 8/08 we had killed Babesia and as of 1/09 we were officially starting treatment for my husband's classic Lyme infection. It seems like forever since we were in treatment. Scott was in IV therapy from Oct. 2007-March 2010. By the beginning of 2010 we were hitting Bartonella hard and his numbers went down. Once his line fell out of his chest in March he was given a break from IV's. Here we are 1.5 years later and his blood work shows that his Bartonella numbers have doubled again. It is defeating to know we worked so hard at something and were so close to now be back where we started. When it comes to Lyme Disease, I firmly believe it can not be eradicated and that makes me very sad.

Lyme Disease Ramblings

It has been too long since I have written. It is time to get this thing updated and to keep up on the Lyme world. I am afraid that we have not been very good advocates since my hubby has stopped IV treatments. He spent 2.5 years on IV's that consumed our life. They were twice a day, 3 hours at a time, 7 days a week. It really was his full time job. He was at death's door more than once, had his body flooded with Ammonia, had his organs shutting down and was just too sick to do much of anything.

It took us 4 years to get him on disability but we are so thankful for that. It will be 2 years in January although it has only been 1 year since we were allowed to get the entire amount. For the first 9 months 80% of his disability went to child support while the courts took their time working out the child benefits. The mom was getting hubby's 80% plus the additional child benefit on top of her 70,000+ a year job. It was really tough on us especially when I lost my job that same Jan. We moved that May and I was lost in the unemployment system for 6 months. Our only income was the $200 a month we were getting from hubby's disability. Talk about hard times!

I am very thankful that we are in a different place now. I was jobless for 15 months. Not getting unemployment for a total of 9 of those months and working 2 part time jobs to try and keep food on the table. We grow when times get tough don't we? I got a job in March and still love it. A paycheck is so exciting for me! I still can't believe I get a paycheck every 2 weeks! My hubby is taking another break from antibiotics because it affects his mind so much that he wants a clear head. It's cruel, isn't it? You are sick and need to kill the bugs but when you don't treat them, you sometimes feel better. Once you start to do the "right" thing and kill the bugs you feel HORRIBLE. What kind of life is that?

What are some of the symptoms you HATE due to the treatments? Are you contemplating taking a break from your treatment to get some relief?

Lyme Disease TShirts for Lyme Disease Awareness Month : To Celebrate Lyme Disease Survivors & Fighters

My second new design to help raise awareness for LYME DISEASE is our new LYME DISEASE SURVIVOR shirt. It was designed to celebrate the fighters who will survive Lyme Disease and for those who have already survived and moved on. While my husband was in IV therapy I learned how important it was to encourage him in his fight. Lyme took so much from our family and we finally feel like we have made a dent in the disease and are on the verge of getting back to a normal life....so this shirt celebrates the return to LIFE!

You can purchase this design at our Lymies Unite cafe press store. This design is currently available on a black shirt only. You can also click on the Tshirt (below) to go directly to the page to buy that shirt.

Lyme Disease Shirts : NEW Designs for Lyme Disease Awareness Month

I always have great intentions for Lyme Disease Awareness Month but life always gets in the way...which I guess is a good thing if Lyme isn't keeping you down. My husband was on IV therapy for 2 years and 3 months before his Groshong catheter fell out of his chest in March. He was so excited NOT to have a foreign object/tube sticking out of his body that he made the decision to take an IV break. His health has steadily improved since IV's and his doctor was planning on stopping IV's in May....and she agreed to our break...sooooo life has felt almost normal again after 3 years and it has been wonderful...thus life has kept us so busy that I haven't done much to tell others about Lyme...

As I promised a month ago...I have TWO new LYME DISEASE shirt designs. These have a little girly flare to them and are meant to CELEBRATE the FIGHTERS and SURVIVORS in your life. You can click on the images to go directly to our CAFE PRESS store. Any sales made directly thru our store earns us an average of $6 bucks while sales from the generic marketplace only gives us $1. If you like these designs and want to buy a shirt you can purchase them from http://www.cafepress.com/lymiesUnite

May is Lyme Disease Awareness Month!

I am working on some new Lyme Disease T-shirt designs and will have them posted for you to view. Because May is Lyme disease awareness month, it gives us Lymies the perfect opportunity to talk about our struggle with this horrible disease. I am also working on a line of shirts that you can customize. New designs coming soon!

Custom Designed Blog Headers

I recently made a new header for Sharon and she graciously donated to Scott's Lyme Disease treatment fund....and that got me thinking...I could make some extra money designing blog headers in exchange for donations to our treatment fund! I have a BFA in Visual Communications with an emphasis in Graphic Design with 10 years of experience...and recently laid off... That has made it a little more difficult to buy the medication that Scott needs...and since designing is sort of like my therapy...I would like to help you update your blog in exchange for any monetary donation you can make. I have done some blog makeovers in the past and am open to anything you might need. I like to work with photographs but can create a scrapbook look as well. Email me HERE to let me know what you want.

Here are some recent samples:

Lyme Disease & Disability in Kansas

We did it! We FINALLY got approved for disability! It took almost exactly THREE YEARS to get approved and will take another 6-8 weeks before we get any money but HALLELUJAH we finally got disability benefits!!!

So, in our fight for disability our time line looks like this...

• January 2006- Scott is no longer able to work.

• March 2006- Scott was diagnosed with Lyme Disease instead of MS

• March 2007- We filed for disability.

• July 2007- Hired a disability rep.

• July 2007- Off The Record request thru ODAR.

• September 2007- 2nd Off The Record request thru ODAR.

• October 2007- Found a local LD doctor.

• December 2007- Started 2 a day IV treatments.

• June(ish) 2008- 3rd Off The Record request thru ODAR.

• July 2008- Got our KS rep involved in our disability case.

• October 2008- Fired worthless disability rep and hired a new one from KC.

• December 2008- Scott's 1 year anniversary at the IV clinic

• May 2009- We received a letter from SS saying we finally had a hearing for July 9th.

• July 2009- 1st disability hearing. The judge decided she needed more info. on LD so she set up another hearing for August. 19th.

• August 2009- 2nd disability hearing with a medical expert and a vocational expert. We are told that we will have a decision within 6-8 weeks.

• October 2009- We get a letter saying another hearing has been set and will be the day before Thanksgiving. The next week we got a call from our lawyer saying the judge had called her and said we didn't need another hearing because she had made her decision. We are told it would take 4 weeks to get the decision.

• November 2009- We called our lawyer and were told that our decision had to be sent to a Decision Writer who would write up the judge's decision and it should be sent any day.

• December 2009- We called our lawyer again, right before Christmas and they in turn called ODAR. ODAR said that they would try and mail our decision before Christmas...

• January 5, 2010- Our letter was started.....

• January 14, 2010- Our letter arrived in the mail and Scott was too nervous to open the letter so he had me do it. From this point we had been waiting for this decision for 2 months shy of 3 years but it has been 4 years since he was able to work. The letter is 16 pages long and discusses everything....but the most important part is that the judge gave us a partially favorable decision. It is partially favorable because instead of back dating the disability to the date we filed, she made it retroactive to Oct. of 2007 when we had more lab tests and evidence of the illness.

That brings us to today, Jan. 28th. We called the SS office the week we got our letter and were told that it will take 6-8 weeks for the decision to be entered and before we would get our first monthly check...so all in all it WILL BE 3 full years! HOLY COW! No wonder families end up losing everything during the process! Kansas is one of the worst states when it comes to pushing along disability cases and the average backlog is 15,000! It took 5 months for our decision to be written up, submitted and sent to us. THAT IS BEYOND RIDICULOUS!!! We have also heard that it will take about 6 months for our backpay to be released so we are anxiously awaiting that check...where we can finally pay off the debt we have been unable to pay off for the past 3 years.

Now that we have finally been approved for disability, I am considering adding more posts about Scott to our family blog. He feels vindicated and justified with his new title and knows it is one step closer to getting back to zero. He no longer needs to defend his illness to those who don't believe him because the State of Kansas has agreed with him and approved his benefits. He no longer feels the need to prove to them that yes, even with good moments, he is still disabled. To celebrate this GIGANTIC victory, we made him a red velvet cake with an apricot sour cream frosting. The boys lit the sparkler candles and we sang, "Happy Disability To You, Happy Disability To You, Happy Disability Dear Daddy, Happy Disability To You!" It was a sweet little moment in a long battle for Health, Disability and Credibility...

Lyme Disease Tests

*borrowed from heallyme

EVERYTHING YOU ALWAYS WANTED TO KNOW ABOUT THE CD57 TEST

By: GINGER SAVELY, RN, FNP-C

From coast to coast, frustrations abound among patients and
clinicians regarding the diagnosis of chronic Lyme disease.
Misinformed health care providers in Texas and surrounding states
consider the infection rare and non-endemic. They are inclined to
rule out Lyme disease based on the negative result of a laboratory
test that, unbeknownst to them, is highly insensitive. In the absence
of a reliable laboratory test or adequate experience in the
recognition of the varied and complex presentations of the illness,
most clinicians are ill-equipped to diagnose chronic Lyme disease.
Many patients suffer needlessly for years, hopelessly lost in the
maze of the health care system, looking for answers and enduring the
skepticism of practitioners inexperienced with the disease’s signs
and symptoms.

What is needed is a better Lyme test or some other objective measure
to persuade the practitioner to consider the diagnosis of chronic
Lyme disease. Enter the CD57 test! You may have heard the term “CD57″
tossed around on chat groups, or your Lyme-literate health care
provider may have even explained the test to you in one of your
moments of brain-fogged stupor. What is this number that sounds more
like a type of Heinz steak sauce than a lab test, and what in the
world does it have to do with Lyme disease?

Let’s start by going back to basic high school biology. You may
remember that white blood cells (a.k.a. leukocytes) are the
components of blood that help the body fight infections and other
diseases. White blood cells can be categorized as either granulocytes
or mononuclear leukocytes. Mononuclear leukocytes are further sub-
grouped into monocytes and lymphocytes.

Lymphocytes, found in the blood, tissues and lymphoid organs, attack
antigens (foreign proteins) in different ways. The main lymphocyte
sub-types are B-cells, T-cells and natural killer (NK) cells. B-cells
make antibodies that are stimulated by infection or vaccination. T-
cells and NK cells, on the other hand, are the cellular aggressors in
the immune system and are our main focus in the discussion that
follows.

Let’s pause a moment and introduce something you probably never
learned about in high school biology class: CD markers. CD, which
stands for “cluster designation”, is a glycoprotein molecule on the
cell surface that acts as an identifying marker. Think of comparing
cells as comparing people. Humans are made up of innumerable
superficial identifying characteristics (such as hair color, eye
color, etc.) and so are cells. Cells probably have thousands of
different identifying markers, or CDs, expressed on their surfaces,
but 200 or so have been recognized and named so far.

Each different marker (or CD) on a cell is named with a number, which
signifies nothing more than the order in which the CD was discovered.
On any given cell there are many different cluster designation
markers (CDs), giving each cell its unique appearance and function
but also linking certain cells by their similarities (like grouping
all people with brown hair or all people with blue eyes). Cells that
have a certain kind of CD present on their surface are denoted as +
for that CD type (e.g., a cell with CD57 markers on its surface is
CD57+).

NK cells have their own specific surface markers. The predominant
marker is CD56. The percentage of CD56+ NK cells is often measured in
patients with chronic diseases as a marker of immune status: the
lower the CD56 level, the weaker the immune system. You may have
heard Chronic Fatigue Syndrome patients talk about their CD56 counts.
A smaller population of NK cells are CD57+.

A below-normal count has been associated with chronic Lyme disease by
the work of Drs. Raphael Stricker and Edward Winger. No one knows for
sure why CD57+ NK cells are low in Lyme disease patients, but it is
important to note that many disease states that are often confused
with chronic Lyme (MS, systemic lupus, rheumatoid arthritis) are not
associated with low CD57+ NK counts. The good news is that for most
Lyme patients the CD57+ NK level increases as treatment progresses
and health is regained.

CD57 markers can also be expressed on other kinds of cells, including
T-cells, so it is important to distinguish between CD57+ T-cells and
CD57+ NK cells. Clinicians need to be aware that many testing
laboratories claiming to perform the CD57 test are actually looking
at CD57+ T-cells rather than CD57+ NK cells, which are the cells of
interest in chronic Lyme disease.

In order for a testing laboratory to measure the CD57+ NK level, it
first measures the percentage of lymphocytes that are CD57+ NK cells.
Then an absolute count is calculated by multiplying that percentage
by the patient’s total lymphocyte count. The standard normal range
for the absolute CD57 NK count is 60 to 360 cells per microliter of
blood. This wide range was established based upon test results of
hundreds of healthy patients. By these laboratory standards, a test
result below 60 cells per microliter would be considered below normal
and therefore associated with chronic Lyme disease. However, a recent
study of my Austin patients has led me to believe that 100 cells per
microliter is a more reliable threshold separating Lyme patients and
healthy controls.

When Drs Stricker and Winger discovered that CD57+ NK cells are low
in chronic Lyme patients and tend to increase with patients’ clinical
improvement, an opportunity arose for Lyme-literate practitioners to
utilize a handy tool to aid in the diagnosis of chronic Lyme disease,
to follow treatment progress, and to determine treatment endpoint.
Just as AIDS patients have always held great store in their CD4 T-
cell count, Lyme patients now have a fairly reliable marker of the
status of their illness.

It is important to remember that the CD57 result is just a number;
far more important is the patient’s clinical status. An old professor
of mine used to say, “treat the patient, not the lab test!” There is
still much we do not know about the CD57 marker and what other
factors may lower or raise it. However, overall, the CD57+ NK count
is a useful tool in diagnosing and treating chronic Lyme disease in
most patients. As a measure of immune status, it provides an indirect
measure of bacterial load and severity of illness. Furthermore, in a
patient who has a negative or indeterminate Lyme test but is highly
suspect for the disease, the clinician may utilize the CD57+ NK count
as one more piece in the complex puzzle of a Lyme disease diagnosis.

Postscript: If you would like your health care provider to order the
CD57 NK test for you, your blood sample needs to be drawn into an
EDTA tube (lavender top) on Monday through Thursday and sent
immediately to either LabCorp in Burlington, NC, or Clinical
Pathology Laboratories (CPL) in Austin, TX. LabCorp and CPL are the
only two labs that perform this test properly. Quest does NOT. The
LabCorp test code is #505026 and is named HNK1 (CD57) Panel. The CPL
test code is #4886, CD57 for Lyme disease. The test is time-sensitive
and must be performed within 12 hours of collection, so blood should
not be drawn on a Friday or results may be inaccurate.

Lyme Light Podcast

The third episode of the Lyme Light Podcast is now available for download from itunes, zune, yahoo and google. You can listen to it from the website at http://sdawson.podbean.com/ or subscribe to it to listen on your ipod.

In this, the third episode of Lyme Light, I have a wonderful conversation with my good friend and fellow Lymie, Dr. Bill. This is my first interview with a non-family member. Dr. Bill lives a whole state away so we did the interview over the phone. I’m still trying to figure out the best way to do this on no budget. So please bear with me on the sound quality. Dr. Bill has a lot of great things to say and offers a unique perspective on life with Lyme disease because of his medical background. I spent months sitting next to Dr. Bill while he was treatment with me and I hope you will discover what I did; that he is a wise, insightful and endlessly optimistic man.

After you enjoy this podcast, please don’t forget to leave me your comments and critiques at http://sdawson.podbean.com/. Also, if you use iTunes, please don’t forget to give Lyme Light a rating in iTunes. It will go a long way towards securing more listeners.

Thank you and enjoy!

P.S. The audio is a little rough on the latest episode as we are experimenting with cell phones, recording and out of state interviews. We really appreciate Dr. Bill's perspective on living with Lyme Disease.

Follow us on Twitter too:

https://twitter.com/tixsuk

https://twitter.com/LymeDiseaseStuf

Lyme Disease Hats, Mugs, T-shirts : Twist of Lyme

One of our favorite Lyme Disease Apparel designs is:

We offer this design on hats, ceramic travel mugs, coffee mugs, women's cut t-shirts, and men's t-shirts. We offer unique, one of a kind Lyme Disease clothing items at our Cafepress store. Visit our store directly at www.cafepress.com/LymiesUnite to see our other products.

Our Twist of Lyme hat is available in tan and white.

Our Twist of Lyme coffee mug is the perfect size for your favorite morning beverage or late night brew. It's dishwasher and microwave safe.

Our Green Twist of Lyme 100% Hanes Authentic Tshirt is preshrunk and durable. It is easily the most comfortable t-shirt we sell and comes in Standard Fit. Available in S, M, L, XL and 2XL.

Our Women's 100% cotton tee is preshrunk, durable and guaranteed. It comes in Light Pink, Light Yellow, Light Blue and looks great! Buy one today!

www.cafepress.com/LymiesUnite

As the wife of a Lyme Disease IV patient I firmly believe that Lymies need to stick together so that is what led me to start Lymies Unite! As a designer, art is my therapy and what better way to educate those around you than to wear your heart on your sleeve? If you have been affected by Lyme disease then you understand what I mean. Help us spread the word about Lyme Disease because education is the first step towards eradicating this disease!

Lyme Disease Podcast: Lyme Light Episode 2

The newest episode of our Lyme Light Podcast is available for free HERE! Our Lyme Light Podcast is meant to encourage and enlighten those suffering with Lyme Disease and to offer support to their friends, families and caregivers.

Finally, after a month and a half I have finished Episode 2, Part 2 of the Lyme Light Podcast. In this episode i finish up my interviews with my family. In episode 1 you met my three boys, now in episode 2 you meet my elusive 12 year old daughter and my wife, who is my primary caregiver. This episode is a little longer than the first one but I think you’ll enjoy the conversation my wife and I have. Not only is she a bonus mom (step mom) to my four children and my caregiver, but now her mother lives with us and has added a new dimension to our daily life. My wife, Dawnua, is an incredibly strong and inspiring person. I know you’ll be encouraged by what she has to say. We’d love to know what you think about this podcast. It seems one episode per week may have been an over-ambitious goal. But if you find this podcast helpful and informative, we’d love to know! Enjoy.

Visit our Lyme Light Podcast at http://sdawson.podbean.com/ and click on the Listen Now button to hear this episode.

Lyme Podcast

Hello! Scott here. It's been a while since we've updated this blog. But I have some very important news! I have started a podcast called Lyme Light. The point of which is to encourage and enlighten those suffering with Lyme Disease. As well as offer support to their friends, families and caregivers. Now, I'm still in IV therapy for Lyme Disease, have been for over 20 months. But I will try to release one new podcast every week.

For the first episode I interviewed my three sons. It is wonderful to look at life through the eyes of children. Not only is there honesty, but there is strength as well. For Episode 2, Part 2, I will interview my daughter and my wife/caregiver.

Ultimateky, the goal of the podcast is to interview others whose lives have been touched by this awful disease. Additionally, I will be speaking to disability lawyers, health care professionals, health dept. officials, etc. I also hope to interview those who have come out on the other side of this battle in order to see some light at the end of the tunnel.

You can listen to Episode 1 by searching Lyme Light in the podcast section of iTunes, or go directly to my feed site where I will also be posting show notes. Go to sdawson.podbean.com, scroll to the bottom and have a listen. You can also add a podcast player to your blog, facebook page, etc. When you done listening, please a comment. I love to hear your thoughts on the podcast as well as any suggestions for future shows. Thanks and come back often!

Scott Dawson

Lyme Disease Shirts: Ignorance is a choice...

It seems that everywhere we go, we run into a wall of deliberate ignorance...and I am growing weary. It is time for a change. It is time for compassion and understanding. It is time for you, our doctors, to admit that you can't fit Lyme Disease into a pretty little box and call it good. It is a complex, multi-systemic bacterial infection that wreaks havoc on entire families and communities. It is time for you to take a stand and start saving our lives.

You can buy this new LYME DISEASE SHIRT online at www.cafepress.com/lymiesunite

Long Term Antibiotics for Lyme Disease

Bethesda, MD, June 21, 2009 - Governor M. Jodi Rell today announced she has signed a bill allowing doctors to prescribe long-term antibiotics for a patient clinically diagnosed with Lyme disease without fear of sanction for state health regulators. The International Lyme and Associated Diseases Society (ILADS (www.ILADS.org)) applaud Connecticut legislature for unanimously passing the bill and the governor for signing a bill that will protect physicians who treat Lyme disease.

FOR IMMEDIATE RELEASE

“The fact is that infection with the bacterium that causes acute Lyme disease, Borrelia burgdorferi, may also cause a chronic, complex, and often life altering disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available,” says Daniel J. Cameron, MD, MPH, president of ILADS, “Chronic Lyme disease patients may face a long hard fight to wellness.”

The bill addresses acute and chronic presentations of Lyme disease and includes a clinical diagnosis of Lyme disease as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.”

Despite all the progress in raising public awareness of Lyme disease since its discovery in state in the state of Connecticut in the 1970s, the numbers and complexity of Lyme disease continue to grow. The bill offers hope that more physicians knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut.”

“One of the burdens of Lyme disease, finding treatment, will be lifted from their shoulders, as this law offers hope to residents that more physicians who are knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut, according to Maggie Shaw, Newtown Lyme Disease Task Force, a patient leader in the Connecticut effort.

ILADS www.ilads.org is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Media contact: Barbara Buchman Lymdocs@aol.com

Click HERE for the direct link to the story.

The Lyme Disease Controversy

The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease,such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitelyy identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue. (posted by my friend K.N.)

Lyme Disease Tshirts : May is Lyme Disease Awareness Month

May is almost over and I haven't done all that I felt I needed to do to help spread the word about Lyme Disease. I never feel like I am doing enough but when you are dealing with LD sometimes it is all you can do just to survive, let alone advocate for others. My husband and I feel like LD is our new religion because it has permeated every aspect of our lives...we can't get away from it and we have become Lyme Awareness Evangelists.... Everywhere we go we end up talking about Lyme...whether we are answering questions about Scott's cane, PICC or why he isn't currently driving...Lyme Disease is everywhere and we are just trying to survive.

Scott has been in IV treatment for the past 17 months and we are exhausted. Every day is a struggle for him because no one in our local medical community recognized the CLASSIC LYME SYMPTOMS back in 1997. NO ONE should have to suffer like this. Something needs to be done. Doctors need to open their hearts and minds to the possibility that they DON'T KNOW EVERYTHING and be willing to listen and learn about this debilitating disease. If you haven't bought your Lyme Disease Awareness products...NOW IS THE TIME!

Lyme Disease Tshirts

I have created a line of Lyme Disease Clothing in order to help pay for some of my husband's Lyme Disease treatment. He is currently fighting the fight of his life and any sales of our Lyme Disease T-shirts help us stay afloat. May is Lyme Disease Awareness month so it's the perfect time to buy a Lyme Disease Tshirt. Click on the shirt of your choice to be taken to our CafePress store where you can choose your size and color. We have 53 items currently in stock.

How To Properly Remove A Tick

I found out this weekend that there are many in the medical field who DO NOT KNOW how to remove a tick. There is a huge population of nurses who know very little about removing a tick and even less about Lyme Disease symptoms. Since May is Lyme Disease Awareness month, what better way to promote awareness than to teach you how to properly remove a tick...and YES, it does make a difference.

"The recommended way to remove an attached tick has changed in recent years. Researchers have found that Lyme disease germs are usually in the tick’s gut rather than in its mouth. Therefore, getting all the mouthparts out of the skin is not considered as important as keeping the tick from injecting more germs from its gut. After a tick has been feeding for a few hours, it regurgitates germs from its gut into the bite site. Thus, it can take several hours for a tick to transmit Lyme disease. Remove ticks promptly. Some ticks have germs in their saliva and can transmit Lyme and other diseases as soon as they bite.

The old methods of burning the tick with a hot match, or covering it with nail polish, Alcohol, lighter fluid, or other chemicals, can cause the tick to vomit more lyme bacteria into the bite site. Using fingers or blunt tweezers to remove it can squeeze the tick’s abdomen and also inject more bacteria into a person. A research study found that all these methods make a person more likely to contract lyme disease. Remove ticks with fine-pointed tweezers, available at some drug stores, or a tick remover tool, available on the internet or from the Lyme Association of Greater Kansas City. It is difficult to remove the tiny nymphs with tweezers without squeezing the tick’s body. Nymphs cause most cases of lyme disease.

The safest way to remove a tick is by sliding something under it, such as a credit card (which doesn’t always work) or a tick remover. Grasp the tick as close to the mouth (the point of attachment) as possible and pull it straight out slowly, allowing the tick about a minute or 2 to release itself. It doesn’t need to be turned or twisted out. If mouth parts are left in the skin, they can be removed with a sterile needle or by a doctor. If they are not removed, they will work their way out of the body in a few days, but may cause itching. If you are camping and must remove a tick by hand, use a leaf or tissue to avoid touching the tick with your bare hands. Don’t squeeze the gut. After removing a tick, disinfect the bite site and tool, and wash your hands with antibacterial soap.

A camping first aid kit should include a tick removal tool, a needle, rubbing alcohol, cotton balls, antibacterial soap, and a container or small zipper bag to save a tick for testing. You may also want tape to seal the container securely. after removing a tick, call the doctor. Some physicians prescribe antibiotics for tick bites; others wait to see if disease symptoms develop. Ilads (international lyme and associated diseases society) doctors recommend a minimum of 6 weeks of antibiotic treatment for an em rash or other early symptoms of LYME disease, because LYME can become chronic and debilitating with shorter treatment courses. (see www.Ilads.org) .

Lyme blood tests within a few days of a tick bite are not useful, since it usually takes a person several weeks to develop antibodies. Diagnosis is based on signs, symptoms, and exposure to ticks.

The Lyme Association of greater Kansas City sells a tick removal kit in a plastic pill bottle. It contains a tick remover tool, instructions, 2 alcohol wipes, a tick identification card, and a tiny zipper bag to save the tick for testing. People have told us they like the tick remover tool because it is easier than tweezers for removing tiny young nymphal ticks safely and is also good for removing adult ticks. It also works well for removing ticks from pets. It can be ordered by sending a check for $5 made out to: “LYME ASSOCIATION” AND MAILED TO:
LYME ASSOCIATION, P.O. BOX 25853, OVERLAND PARK, KS 66225
WHAT TO DO WITH THE TICK
AFTER REMOVAL, YOU MAY WANT TO SAVE THE TICK FOR IDENTIFICATION AND TESTING. CERTAIN TICKS ARE MORE LIKELY TO CARRY CERTAIN DISEASES. BLACK-LEGGED (DEER) AND LONE STAR TICKS CARRY LYME DISEASE IN THE CENTRAL AND SOUTHERN STATES. TICK TESTS FOR DISEASES, ALTHOUGH NOT 100% RELIABLE, ARE MORE ACCURATE THAN HUMAN TESTS, WHICH ARE NOT VERY RELIABLE, ESPECIALLY IN THE CASE OF LYME DISEASE. HOWEVER, A TICK CAN SOMETIMES HAVE A NEGATIVE TEST AND STILL BE CARRYING LYME DISEASE. A POSITIVE TEST PROBABLY INDICATES THAT THE TICK IS CARRYING THE DISEASE, BUT IT DOESN’T ALWAYS MEAN THAT THE TICK TRANSMITTED THE DISEASE. SOMETIMES AN INFECTED TICK THAT IS ATTACHED FOR ONLY A SHORT TIME DOES NOT TRANSMIT LYME
BACTERIA.

WHEN YOU REMOVE A TICK, USE A MAGNIFYING GLASS TO LOOK AT THE COLOR OF THE LEGS. IF THE LEGS ARE BLACK, IT IS PROBABLY A DEER TICK. IF THEY ARE RED OR ORANGE, IT IS PROBABLY A LONE STAR TICK. BOTH CAN TRANSMIT LYME DISEASE, BUT LONE STAR TICKS OFTEN CARRY A STRAIN THAT IS MORE LIKELY TO PRODUCE NEGATIVE ANTIBODY TESTS.

TICKS MAY BE SENT TO BE TESTED FOR DISEASES TO: IGENEX LABS, PALO ALTO, CA (800) 832-3200; MDI, MT. LAUREL, N.J. (877) 269-0090; OR NJ LABS, NEW BRUNSWICK, NJ (732) 249-0148. CALL FOR MAILING INSTRUCTIONS. THEY PREFER LIVE TICKS BUT WILL TEST DEAD TICKS. DON’T KILL IT WITH ALCOHOL, SMASH IT, OR BURN IT IF YOU WANT IT TESTED. THE TICK MUST BE KEPT MOIST IN THE CONTAINER WITH A FEW BLADES OF GRASS OR A COTTON BALL DAMPENED WITH WATER. AS OF MARCH, 2004, THE COST OF TICK TESTING IS:

IGENEX $55 FOR LYME, EHRLICHIA, BABESIA, OR BARTONELLA ($220 IF YOU WANT ALL 4). IF BITTEN BY SEVERAL TICKS, THEY TEST UP TO 20 TICKS FOR THE PRICE OF ONE.

MDI $155 FOR LYME OR EHRLICHIA, $127 FOR BABESIA; BARTONELLA TESTING IS ALSO AVAILABLE.

NJ LABS $60 FOR LYME, OR $175 IF THE TICK HAS BEEN DEAD OVER 2 WEEKS OR KILLED WITH ALCOHOL. THEY DON’T TEST FOR CO-INFECTIONS, JUST LYME.

IF YOU PREFER TO DISPOSE OF THE TICK, YOU CAN KILL IT BY PUTTING IT IN A CONTAINER AND THEN ADDING A COTTON BALL SOAKED IN RUBBING ALCOHOL. YOU CAN THEN DISPOSE OF THE DEAD TICK IN THE TRASH. TICKS DON’T DROWN. FLUSHING IT DOWN THE TOILET WILL NOT KILL IT."

(You can find this article and more at the Lyme Association of Greater Kansas City.)

Fight Lyme Disease...Ignorance Is Contagious!

May : Lyme Disease Awareness Month

It's that time of year again for Lyme Disease Awareness. For those of us affected by Lyme Disease EVERY month is LD Awareness Month but we take this month to push, promote, teach, beg and plead for changes in the medical community concerning Lyme. At this time last year I had the privilege of receiving a proclamation from our small town Mayor officially declaring May as Lyme Disease Awareness month in Ottawa, Ks. There are many sick people in Ottawa who are being refused treatment based on the inadequate IDSA guidelines. Those people will continue to deteriorate until the medical community chooses to open their minds to this devastating disease. Unfortunately, no one seems to care about Lyme Disease unless they are directly affected by it. If you haven't told someone about how LD has changed your life, this is the perfect month to SOUND THE ALARM!

"Thank You Mayor Ramsey. On behalf of the Lyme Disease Association of Franklin County and the Lyme Wellness Center of Kansas we want to thank you for this proclamation declaring May as Lyme Disease Awareness Month.

Lyme Disease is a bacterial infection caused by the spirochete Borrelia Burgdorferi. It is a systemic infection that can affect almost any part of the body. According to the International Lyme and Associated Diseases Society "Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurologic conditions, as well as arthritis, Chronic Fatigue Syndrom, Gulf war syndrome, ADHD, fibromyalgia and other various difficult-to-diagnose multi-system syndromes." Not only can Lyme disease be incorrectly diagnosed as other conditions, it can also occur concurrently with other conditions or be diagnosed incorrectly.

With the declaration that May is Lyme Disease Awareness Month it opens the door for education and prevention here in Ottawa. For those of us in the Lyme Disease Community we are painfully aware of the physical, neurological, emotional, spiritual and financial complications that are caused by this complex bacterial infection. My husband Scott was diagnosed with late stage Lyme Disease in March of 2006. With two years of research and treatment under our belts, we have become Lyme Advocates. We meet people every day who are being told by Kansas doctors that Lyme Disease does not exist in the Midwest, let alone KS. They are being turned away and refused medical treatment based on inadequate and outdated information.

With the recent announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines of the Infectious Diseases Society of America we know the tide is turning. Because the IDSA guidelines have been treated as mandatory within the medical community, many patients have suffered and been refused medical care. This opportunity to include previously suppressed scientific viewpoints and evidence will change how we are diagnosed and treated for Chronic Lyme Disease. The agreement by the IDSA to reassess, update and revise the guidelines will undoubtedly make an impact in Ottawa, KS. It is our hope that this proclamation will be the first step in educating our medical community and will bring about a greater awareness of this hidden epidemic in Ottawa residents.

If you have questions about the symptoms and treatment of Lyme Disease there are several local groups who are willing to listen and help. The Lyme Disease Association of Franklin County meets at the Paper Haven on the 4th Monday of each month from 7-8pm. The Lyme Association of Greater Kansas City meets the 4th Thursday of each month at 6:30 pm at St. Jo Hospital and they provide a hotline at 913-438-LYME.

As a founding member of the Lyme Disease Association of Franklin County, as a lyme advocate and the wife of a chronically ill Lyme patient I want to say Thank you to the City of Ottawa and to Mayor Gene Ramsey for making MAY Lyme Disease Awareness Month and for giving us an opportunity to help others in our community!"

Lyme Disease Clothing For Your Pet? Yes!