Lyme Disease Shirts

We have had a great response to our new Lyme Disease Awareness store and know that you are proudly displaying your support for other Lymies. As we struggle with this disease more design ideas pop into my head, so check back often for new items. You can purchase these itmes here: www.cafepress.com/LymiesUnite

Lyme Disease Awareness Apparel

Take a look at our CafePress store full of Lyme Disease Awareness apparel. Click on each design to be taken to the CafePress page so you can look at all the options. All proceeds go towards the cost of Scott's medical care. It costs about $1000 a DAY to treat Scott's Lyme Disease and we are always looking for ways to pay for his treatment. Thank you for your help!
Click HERE to be taken to the CafePress store to see all of the t-shirt designs.

It's Time For Another Lyme Lesson

Because this illness is commonly misunderstood, us lymies are big on educating those around us. We become Lyme patient advocates and strongly believe in EVERYONE being tested. Here are some fun facts for you to review...

1. Fewer than half of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven Lyme borrelial infection.

2. Fewer than half of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection.

3. There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However, there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

4. An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high-dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. (Imagine how long a COMPLICATED case, with co-infections needs to be treated?)

5. Many patients with Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.

6. There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.

7. Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.

8. And last but not least....a quick list of symptoms. Do you see yourself in this list?
Symptomatic presentations of Lyme disease include:

• Fatigue
• Low grade fevers, "hot flashes" or chills
• Night sweats
• Sore throat
• Swollen glands
• Stiff neck
• Migrating arthralgias, stiffness and frank arthritis
• Myalgia
• Chest pain and palpitations
• Abdominal pain, nausea
• Diarrhea
• Sleep disturbance
• Poor concentration and memory loss
• Irritability and mood swings
• Depression
• Back pain
• Blurred vision and eye pain
• Jaw pain
• Testicular/pelvic pain
• Tinnitus
• Vertigo
• Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)
• Headaches
• Lightheadedness
• Dizziness

This is a small list of the various symptoms that Lyme disease can cause. You can find a more complete list HERE. The info. in this post came from Turn The Corner Foundation. You can also find info. HERE on the FIRST test that you would need to have done if you are concerned about Lyme disease. Take a few minutes and do some research. This debilitating illness is real and it is everywhere.

Lyme Disease: The Battle Continues

Ten Facts About Lyme Disease:

1. Lyme is the most prevalent vector-borne disease in the U.S. and it's found in more than 65 countries worldwide.
2. According to the CDC only 10% of Lyme disease cases meeting the CDC criteria are reported each year. That means about 230,000 new cases of Lyme meeting that criteria occur each year in the U.S.
3. Patients with Lyme disease often have co-infections with Babesia, Anaplasma, Bartonella, or other organisms, clouding the dignostic and treatment picture.
4. Lyme disease, the great imitator, can be misdiagnosed as MS, ALS, Lupus, Chronic Fatigue, Fibromyalgia, Autism, Alzheimer's and Parkinson's.
5. A bite from a tick that's infected with Lyme disease bacteria can lead to neurologic, cardiac, arthritic and psychiatric manifestations in humans.
6. Children 5-14 are at the highest risk of acquiring Lyme disease; some studies show significant IQ drops in students with Lyme, reversed after treatment.
7. Lab tests for Lyme disease are not reliable; you can test negative and still have the disease.
8. Lyme disease can cross the placenta and cause birth defects or even death of the fetus.
9. A 2006 published CDC animal study shows that trasmission of Borrelia burgdorferi (the bacterium that causes Lyme) through blood transfusion in mice is possible.
10. A rash does not always occur with Lyme disease, and symptoms may occur days or months after a tick bite. (These 10 facts were taken from www.lymediseaseassociation.org)

We had another apt. with Dr. R. last week and it was 2 hours long! She had another Dr. in the room who was there to learn and observe how to treat LD. Doctors are always contacting her to find out what to do with their sick patients and some of them are able to come and train with her. She is an amazing lady! Anyway, she feels that based on his blood tests and his progress we are now ready to attack his classic lyme infection. (Borrelia burgdorferi, also known as Bb).

We are excited about this new development and appreciate all your cards and prayers. When the drudgery of daily IV treatments loom over our heads we are thankful that we are sustained by a loving God who knows exactly where we are and what we need. I will add more info to Scott's Caring Bridge site in case you want more intimate details. I am including a photo of Scott so you can imagine how he spends his days. Please continue to pray for this amazing man. He works so hard at being a considerate husband and father and I am so thankful that God has extended his stay on this earth.

Lyme Disease Sucks

Welcome to our Lyme Disease blog. My husband of 3.5 years has been sick on and off since he was very young. For 10 years he suffered numerous neurological symptoms and was misdiagnosed with MS and later treated for Parkinsons. In 1997 he had all the classic symptoms; bite, rash, bell's palsy, severe arthritic pain, dizziness and more. He endured 6 spinal tap attempts, CT scans, blood tests, neuro testing and more only to be told it might be MS. After a severe injury to his arm in the summer of 2005 his health steadily declined until he was bed ridden in December 2005. We got married in August of 2005 and found out he had Lyme disease in March 2006. We had a small business that he could no longer help me with and we began the longest, hardest fight of our lives. We have suffered great material loss because of this illness and are trying to rebuild our lives.

I am a designer by trade and am trying to meet our financial needs on my own. My husband has not been able to work since December 2005. It has been an uphill battle and we still have 9 more months to wait for our disability hearing. We have 4 children and suspect that one of them may also have Lyme disease. We are not quite ready for this as my husband is currently in IV treatments 6 hours a day, 7 days a week. His medical bills are astronomical as he "spends" $1000 a day at the clinic. Thankfully, we DO have insurance but it only pays for a portion of the bills. We are struggling to pay for his prescription meds (until our deductible is met) while affording our rent, groceries and utilities. If you are able to help us with his Lyme Disease treatment fund we would GREATLY appreciate it.

I will be adding a link to our Cafe Press website with our Lyme Disease awareness items that are for sale. We hope you will help bring awareness to this horrible disease by wearing our products.