Good news. Bad news. Needle blues

Yesterday I had Lyme appointment #265. Just kidding. I honestly have no idea, but it feels like way too many.

At each appointment, my doctor tests my PH levels. When I started seeing this LLMD a year and a half ago, my “PH” was as bad as it gets. Yesterday it was close to the best you can get – 7.5. (8 is the best.)

Why is this important? An alkaline body can heal and fight infection better than an acidic body. When your body is in an acidic state, nothing works right. Lyme and co had caused my body to become totally acidic, which created a vicious cycle of having a sick body that couldn’t heal properly. I’m thankful to see signs of a healthy body again.

More good news… this was the first appointment that he didn’t hear any sign of a heart murmur. Lyme was starting to negatively affect my heart. If I hadn’t gotten IV antibiotics when I did, I don’t want to think of what could have happened. I know many doctors who want you to believe that Lyme is “easy to treat,” but that’s only if you find the bite and get antibiotics right away. The truth is that Lyme kills, even if it’s a slow tortuous death – it can kill you. Lyme Carditis is a real thing and I was getting on that crazy train.

If you heard screaming and swearing coming from O’Fallon today around 8:30am, that was me. I apologize… 

Today, I felt like this Lyme life was trying to kill me. My doctor changed my IV antibiotic to one that will target the Babesia and I was excited to start it. My nurse came out to do a dressing and needle change. It gets changed out once a week, and it’s usually pretty easy and I even know how to take the needle out myself. But on occasion, there have been some issues. The port may have moved or rotated under the skin or maybe it’s from scar tissue, but sometimes my nurse can’t get a blood return. It’s been pretty problematic off and on since I had the surgery and it’s a pain when it happens.

Today, after several sticks trying to gain access to the port and two needles, there was still no blood return. This happened a few weeks ago, and I had to give the port a break and get a regular IV in my arm for about a week. But my veins went on protest today and did not cooperate. They were difficult to find, then they blew, I was screaming and crying. It was awful and painful and my poor nurse still couldn’t get access. What a morning!

My body was so done and I was close to blacking out, so we will try agin in the morning. You know it’s bad when your nurse has to call for back-up. Hopefully, with two nurses and a less swollen port site, the port and/or my veins will cooperate and I can get started on my new antibiotic! Please pray for “easy access” and no crazy reactions to the new medicine! Also, please pray for my awesome nurses. I know all these complications are frustrating for them, too!

**Insurance is still denying coverage of my antibiotics, so we are appealing their decision – sending letters and doing what we can. Will keep you posted!

Thanks, for the love and prayers!

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Love Notes

I am frequently visited by encouragement fairies. They leave notes for me and Ryan on the wall outside our bedroom door. Their little souls are so in tune with the Fathers spirit. I think they must hear Jesus in ways we can’t (or won’t) listen to. I think we tune it out as we grow older. I want to hear His voice and act on it the way my girls do. Love in action. Being loving isn’t just words to them, they live it out.

If we all had hearts like children, this world would be a better place.

Who can you be an encouragement fairy to this week?

Whatever you do, just be “a-some” and spread the love. You don’t know what a few kind words can do to someone’s soul.

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Lyme in Missouri

I recently wrote the Missouri Health department to inform them that I was CDC positive for Lyme, Babesia, and Bartonella. It’s important for each case to be reported so officials can keep track of what diseases the ticks in Missouri are carrying. This is the letter I wrote:

To Whom It May Concern, 
I thought I should make you aware that I am a CDC positive Lyme case in O’Fallon, MO. I was diagnosed January ’13 and after a year of oral abx with no success, I am now on IV abx for Lyme, Babesia, and Bartonella. I’ve never been to the Northeast and I have lived in STL for over 12 years, born and raised in Dallas, Texas. I was bit in 2003 and the tick was attached for over a week, flu-like symptoms early on and fatigue/joint pain, but I didn’t think of the bite. I started having severe and debilitating problems in 2007 and they continued to get worse over time until I was bedridden. After years of misdiagnosis of MS, Lupus, Fibromyalgia, RA, etc, I finally know what is wrong. Lyme is here. It’s an epidemic. We need to get the word out!

Last spring, while walking in our neighborhood me, my husband, my two little girls and our dog had ticks on us when we got back home. I saved two of the ticks if you are interested in testing them. I want to know what bacteria/disease, if any, the ticks close to my home are carrying. 

Thank you for your time! 

Not only did I get a quick reply, but I had confirmation that little by little the tides are beginning to change. In the very least, Missouri government is acknowledging tick-borne diseases which is not what most Missouri primary care, specialist doctors, and even some veterinarians are telling their patients.

Dear Ms. LeBlanc,

Thank you for taking the time to post your concerns regarding Lyme disease to the Missouri Department of Health and Senior Services (DHSS) web site.  I am sorry to hear about the troubles you have experienced and the dramatic impact on your health. You may not be aware that laboratories’ and physicians’ reporting of tick-borne disease to Missouri public health agencies has almost doubled in the last five years.  As you have suggested, people’s lives can be radically altered due to a tick bite. 

In response, DHSS has partnered with tick-borne disease advocacy groups and local public health agencies to distribute posters, bookmarks, and radio public service announcements targeted at preventing tick bites and increasing awareness of the diseases that can result from a tick bite.  I encourage you to visit our “Ticks Carry Disease Materials Order Form” at the link below if you’d like to obtain any of our materials at no charge: 

http://health.mo.gov/living/healthcondiseases/communicable/tickscarrydisease/orderform.php

To document new cases of Lyme disease, physicians caring for patients with possible infections are asked to provide DHSS with the basic clinical, laboratory, and patient exposure assessments.  Unfortunately, documenting an old infection is more difficult as laboratory assays may not be as sensitive once the acute phase of the disease has past.  With the understanding that Lyme disease testing, diagnosis, and treatment can leave many people frustrated, our best recommendation is one of the oldest tenets governing the relationship between the patient and the care provider – if you have any concerns about your diagnosis or treatment, you should be aware that it is always acceptable for you to obtain a second opinion.

DHSS does not test ticks, but several commercial laboratories advertise on the Internet that they can perform assays for multiple pathogens for a fee.  The presence of bacteria or virus-infected ticks is not always a good predictor of human disease risk, however.  Life-threatening illness from ehrlichiosis, for example, tends to occur more often in older people whose immune systems are not as responsive as they once were.  As with many other kinds of infectious diseases, not everyone who becomes infected with a tick-borne pathogen develops symptoms.

Again, thank you for taking the time to visit the DHSS website.  We wish you the best in your recovery from your condition.

Karen F. Yates, M.Sc.
Vector-Borne Disease Program Coordinator
Office of Veterinary Public Health
Section for Disease Prevention
Missouri Department of Health and Senior Services

Tick borne disease has doubled in the state of Missouri… and that’s not including the cases that aren’t reported or misdiagnosed. It’s probably quadrupled. I know there is a long way to go in the form of research and reform where this politically charged disease is concerned, but I am hopeful that old/false information will finally stop getting perpetuated, despite the fact that there were still some things I disagreed with in this letter, based on my research.

I had an RA specialist tell me just last fall that Lyme did not exist in Missouri, nor did ticks that carry disease. Obviously, I knew this was false information and it worries me that she is probably spreading this info to her patients and possibly giving countless misdiagnosis’ of RA that is really Lyme disease. Not only did she argue about it for 20 minutes, but she belittled me and told me that I didn’t know what I was talking about because “she was the one with the medical degree.” As she left the office, she yelled back at me that she wasn’t going to continue arguing with someone who didn’t know what they were talking about and insisted there was nothing wrong with me.

I really feel like I need to print this quote (taken directly from the Missouri department of health website - Missouri Government Health Services) and glue it on her office door, along with the letter I received from the Missouri GOVERNMENT acknowledging the existence of Lyme and tick-borne infections here. 

“At least six different human tick-borne diseases have been reported in Missouri: Rocky Mountain spotted fever, ehrlichiosis, tularemia, Q-fever, Lyme or a lyme-like disease and the southern tick-associated rash illness. Tick-borne diseases are a type of emerging disease, many of them first recognized in the last 30 years. Human case numbers per year for tick-borne diseases are generally on the rise. This upward trend is due to better recognition and disease reporting, but is also a reflection of changes in the environment that fosters increased exposure and transmission to humans.”

I find it is such a shame that Lyme sufferers not only have to battle their symptoms, their doctors and their insurance companies, but they also have to become advocates for themselves in every way imaginable. I can’t think of an instance besides the AIDS epidemic where a disease was more controversial and those in power treated it with such disgrace. There are too many morally corrupt people pulling the CDC and IDSA’s strings. Patients shouldn’t have to deal with all of this on top of their debilitating disease. It is more than an obstruction of justice, it is a travesty.

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