10 Things You Need to Know About Lyme Disease…

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10 Things You Need to Know About Lyme Disease

It’s everywhere

Tick borne diseases have been found in every state, every country, and every continent – except Antarctica. Ticks travel so it makes perfect sense that Lyme is not only in one place. Ticks also hitch rides on birds, small animals, etc. and can move geographically this way, as well.

Children are at the highest risk

Children suffer the most from Lyme and co-infections because they are typically more active outdoors and the symptoms can be mistaken for other illnesses. Children go years suffering the devastating consequences as the disease gets worse over time, so they miss out on their childhood before getting an accurate diagnosis. The hardest hit age group is age 5-14.

It’s commonly misdiagnosed

Many tick borne disease researchers and doctors are finding that their patients that have MS, ALS, early on-set Alzheimer’s, Lupus and many other auto immune and incurable diseases are positive for Lyme. Some recent research done with post-mortem ALS and Alzheimer’s sufferers revealed the borrelia (Lyme) bacteria was in their brains and other areas of the body. People around the world are discovering that what they thought was MS and ALS was actually Lyme and their symptoms are alleviated with long term antibiotics.

It feels like you’re dying

One person can have up to 50 painful symptoms that cycle on a weekly basis because of the systemic and cyclical nature of the bacterial disease. The bacteria is spiral shaped and screws in the joints and muscles causing joint pain, migraines, nerve damage, paralysis, eye problems, insomnia and many other symptoms that cause debilitating problems. When the bacteria reproduce and are “active” in the body, it causes flare ups of symptoms that can cause new symptoms or ones that come and go at different times causing a terribly long and frustrating journey to get an accurate diagnosis. Doctors often dismiss Lyme patients as hypochondriacs because of the many “dramatic” complaints of rotating symptoms that “come and go.”

You might not get that “bulls eye” rash

More than 40% of tick borne disease sufferers never had a rash and by the time they were diagnosed it was too late to treat their disease easily. Doctors usually won’t give antibiotics unless you have the rash, but you could still be infected if you were bitten by an infected tick.

Current testing is terribly flawed

This makes diagnosis almost impossible. The current tests most primary care doctors will give for Lyme disease only tests for one particular strain of Lyme and there are over a hundred strains, not to mention the many other tick borne diseases in which testing is not available. The current Lyme blood test only tests for antibodies, not the Lyme bacteria and Lyme supresses the immune system, causing the body to not create antibodies for Lyme. This is very problematic, because if you have Lyme you could test false negative even if you are positive.

Lyme and co-infections can be chronic

Those who seek treatment quickly for tick borne disease have a good chance of recovery but left untreated, it can be a life-long, grueling and costly chronic disease.

If caught late, tick borne diseases can be debilitating and even fatal

Many tick borne diseases can cause great damage to the brain, nervous system, neurological functions and the heart. Lyme carditis can cause heart arrhythmia, palpitations and heart attack.

Tick borne diseases can be sexually transmitted

Entire families suffer from Lyme disease and co-infections that have possibly been passed from husband to wife, (sexually transmitted) and from mother to child, (in utero). The bacteria is very similar in shape and type to the bacteria that causes syphilis, so this could be a reason that it is possible.

Awareness and education is the key to prevention

Do tick checks often – even if you have only been in your back yard. Ticks are everywhere – not just out in the woods. Use DEET and other insect repellent, but also dress for the activity. If you are camping, wear long socks tucked into pants so that ticks can’t crawl under your clothing. Check your pets after walking them so that they aren’t bringing ticks into the house. Talk about it. Let others know how dangerous ticks can be! Spread awareness!

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Curse the Moon

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When I first began navigating my diagnosis a few years ago, I joined some online Lyme support groups to get information, emotional support, and understanding. Within the first few weeks, I was painfully aware of how epidemic this disease was. There were literally thousands of people in these groups who had eerily similar stories to my own. We were all years in the making of no diagnosis, misdiagnosis, and waiting for a cure. We all had the same experience of many doctors who laughed in our faces, denied our pain, threw anti-depressants at us or didn’t help us at all. Some of us even lost family or good friends because they doubted the existence of a stealthy bacteria as the reason for all of our problems or just got weary of helping us.

I immediately formed a connection with these fellow “Lymies,” as some of them call themselves. One of the first to reach out to me and help me wade through the deep waters of the many layers of Lyme disease was a man named, Mike (or as he was known in most Lyme groups, Six Way Lymie.) He tirelessly fought to bring awareness to tick-borne diseases and to help others figure out how to go about testing, treatment, and pain remedies. He gave of his time and his strength, when he had it. He was a warrior for the group.

In the past few weeks, several of our own have lost their fight with Lyme Disease. One of them was Mike. We were not close and I didn’t know him personally, but at a time in my life when I was drowning in research, medical paperwork, and doctors orders, Mike threw out a life raft – he gave me simple and practical advice that I now pass on to others in the Lyme world. “Do what your body tells you to do.” I’m paraphrasing his words, but it was something very simple. That was it. It was a comment in a thread with many other comments, but I remember it because it was helpful and it smacked me in the face with some truth when I needed it the most.

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I needed to know in that moment that it was ok to move on from a certain treatment, regardless of what others were telling me to do. I wasn’t listening to my body, even though everything in me was telling me to move on from oral antibiotics because they were not working and my body was fighting treatment. Someone’s comments rose above the others and I heard it clearly, go with my gut. Listen to my body. I did and I’m better for it now.

If IV is the right choice for you, do it – don’t let the fearful talk online scare you. It just may put you in remission. The natural route may be best approach, or a combo of antibiotics along with natural remedies might be what fights the infection best in your body. Everyone is different. Listen to the doctor you trust the most and those whose opinion you value who love you, but ultimately the choice comes down to you and your body. Do what’s best for YOU.

My doctor fully believes in the mind body connection and I am starting to realize just how powerful that connection really is. I don’t believe you can “will yourself to be well” or anything like that and neither does my doctor, but I believe that when you are trying to get better, you must be emotionally healthy and shut out the negativity in your life to heal the best you can physically. Science even backs it up. Stress and emotional pain causes heart attacks, cancer, and many other health problems. I needed a simple reminder to shut out the world, listen to my body, and do what is best for me. I will continue to pass on this wisdom to others in the Lyme community and throw a life raft to others that are navigating similar waters. Mike left a legacy in our Lyme community and he will be missed. 

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I thought it would be appropriate to end this post with a song my friend wrote a few years back when I was in the throes of this disease. He wrote it after I mentioned that I was having an off night with song writing because it was a “full moon” and I explained that many Lyme suffers can be negatively affected by the full moon. Because of the reproduction cycle of Borrelia, the spirochetes seem to be more active during the full moon phase and “come out” from burrowing in joints and muscles during this lunar cycle, which in turn makes the pain very intense. I have migraines, severe joint pain, and flares in inflammation during the week of the full moon. You can read more about it here: Full Moons and Lyme Disease

At the time that I told Josh about this I wasn’t even aware he was even paying much attention. I get very used to people tuning me out when I’m talking about Lyme. (Not that he would, just that I have gotten accustomed to it!) Sad but true. No one wants to talk about disease, pain, or the daily problems of a chronic illness. I had no idea that, not only was he listening, but he was empathizing. He went home and wrote this beautiful song that sums up so much of what Lyme disease is for me and the Lyme community. I am humbled and thankful for the friends I have that truly listen and care about me and my family.

I dedicate this song to those who have lost their fight with Lyme Disease this month. Mike, JoAnn, Annie, Lucy, and Julia –  I am so sorry for your pain. You fought hard and you fought well. Thank you for spreading awareness and giving hope to our community, even when you were struggling to feel hope yourself. I hope you can rest now. No more pain. No more frustration. No more struggle. We are praying for your families and friends. You are not forgotten and we will curse the moon for you…

This recording starts when Josh is in the middle of setting up the song. He gave a shout out to Lyme Disease Awareness month and even explained the disease to the audience, but I missed recording it. I came out to support my friend in his musical endeavors and was not expecting to hear this song, so I apologize in advance for my lack of videography skills. I was crying and trying to hold my phone still at the same time. The lyrics just get to me…

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Curse the Moon

I’m holed-up on a hill top until the sun fades away
‘Cause my work begins at the end of the day
While most lay their heads down with schedules to keep
I’m practicing words I was raised not to speak
Silent I kneel, set my gaze toward the sky
And wait for the clouds to divide

Then under the shining night
While others watch and woo
I look to the porous light and
I curse the moon for you

There’s more to this world than our eyes take in
Chaos held back by a veil, wearing thin
But New London county has a story to tell
Where some rogue tore it open and caught a ride out of hell
And now, as a passenger, fights for the reins
Contempt for the charge of your veins

O, poets will praise it’s face
Love songs often do

But I’ll stand firm and make my case and
I’ll curse the moon for you

O, bless the hands and the seeds that they sow
But I’ve designed a course of my own

Whate’er names in orbit pass
Harvest, Blood or Blue
None hence shall escape my wrath
I curse the moon for you

Joshua Vorvick 2014

 

For all of you in the Lyme community that are suffering, please don’t suffer alone. Reach out. Take heart and have courage. We are all here for you. Please try again tomorrow

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Change Maker

 

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It’s funny how things in life come full circle. When I was diagnosed with Lyme and co-infections in 2012, after (grueling and agonizing) years of searching for answers to a notebook filled with health problems, it was after Ryan had left his management IT job of ten years to go full time into the ministry. We downsized from our 5 bedroom, 4 bath, 3,600 sq ft home to a 2 bedroom, 2 bathroom, 1,191 sq ft apartment for a few years. So, obviously we purged, sold a ton of stuff, and stored the rest. I did most of the selling and packing myself, which took it’s toll.

By the time we moved, my body was shutting down on me completely. The next few years is a blur to me now. I was in constant pain, severely fatigued, and was intermittently bedridden. I remember being so thankful that I had such a small space to clean and no more stairs to climb in pain anymore!

My youngest daughter was not yet in school during my worst years with Lyme, so she saw what no one else did – the raw moments of debilitation that this disease causes. I believe this is why she has always been my biggest advocate. Starting at age four, she watched me struggle with my health on a daily basis and helped as best she could. I have moments tucked away that are precious to me of her wiping away my tears, praying over me, and bringing me ice packs and stuffed animals for comfort. It wasn’t always bad, but some days were very hard and she was a trooper through those dark days.

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When she started Kindergarten, she educated her class about ticks and talked about Lyme disease. She advocated for me throughout my entire journey. Everywhere we went, she would speak up about my disease, telling others to do regular tick checks. She even drew detailed pictures to further illustrate her points. It was convicting to see a child live with compassion and want to make a difference for others. She saw first hand what this disease was doing to her mommy and she wanted to make sure that it didn’t hurt anyone else.

Little did we know that just a couple of years later, she too would be suffering from this awful disease.

When Cammie began having Lyme like symptoms, I think I was in denial. I didn’t want to believe it was possible that I could have passed this to my children in utero. I knew how bad the burning pain was and I wouldn’t wish this kind of aching fatigue on my worst enemy. After she tested positive, I was devastated. I am thankful she is getting treatment, but everyday I still mourn the fact that I was not educated about Tick Borne diseases earlier in my life. It could have made all the difference in the world if someone had been a change maker for me and told me about Lyme.

Last year I met Megan, an amazing woman in the St. Louis Lyme Disease group who is a 4th grade teacher, also living with Lyme and co-infections. She is an awesome advocate and spreads Lyme education and awareness every chance she gets. One of her students, Emily came to her early one morning in February before class and told her she had been collecting donations from family and friends for over 6 weeks. Emily had taken it upon herself to gather donations to help those suffering with Lyme. Megan told me she wanted to see Emily’s donations go to another child suffering from Lyme Disease. I cried for over an hour. Camdyn’s doctors appointments are not covered by insurance and every visit is hard for us financially. The money Emily gave covered a visit and one of her prescriptions. Humbled. Amazed. Thankful. I don’t think there are many words to describe that kind of generosity, but those were my first. When I told Cammie what another little girl did for her, she immediately went to her desk and wrote Emily a thank you letter. I am hoping she can give it to Emily in person soon.

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Megan and Emily

Emily’s loving act for my daughter further fuels my desire to continue spreading Lyme awareness and understanding. With understanding comes compassion, and with compassion comes hope. When presented with the facts of this disease, Emily was moved to compassion to help those suffering. Oh, what we can learn from a child.

I want to thank Emily and Megan for their generosity, big hearts, and for showing my 8 year-old what it looks like when love comes full circle. What a beautiful thing for my daughter to witness. She saw this scripture in action, “Do unto others as you would have them do unto you.”

Cammie was my change maker and helped me when I was at my worst.

Emily was Cammie’s change maker and helped her when she needed her the most.

Whose change maker are you going to be today? Who can you offer hope to? Be a giver of hope!

Be a…

changemaker

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The Cost of Lyme

In 2013 I began treatment for Borreliosis (Lyme),  Babesiosis, and Bartonella. After years of health problems and misdiagnosis, I had already been cataloging and recording my prescriptions and medicine. But I began to keep my empty bottles after I was finally accurately diagnosed with what is commonly referred to as, Late Stage Lyme Disease or Chronic Lyme.

I thought it would be a good visual of how far I had come, if I had a pile of pill bottles to show for it – a warped prize I guess you could say. I was hoping I could “mark the moment” and give hope to the Lyme community. I wanted a picture of what I had to go through just to get my health back. Pictures tell a story that we simply can’t articulate with words. My only thought back then was that a couple of boxes of bottles would bring some awareness to this awful disease and maybe it would make someone do a tick check or keep a friend from going through a lengthy battle of their own.

As many of my readers know, by 2014, as my neurological symptoms got progressively worse, I had to get a PICC line, then a port… and yet another port. I did IV medication for over 9 months. My husband and I decided to continue keeping the empty medicine bags, vials, and containers as much as we could. We didn’t keep everything obviously, simply because we lacked the space, but we kept the most important. This week my husband helped me sort and count.

240 bags of Vancomycin

268 bags of Primaxin

79 syringes of Cefotaxime

218 syringes of Zofran

194 syringes of Vitamin B12

83 prescription bottles – oral antibiotics, kidney meds, migraine meds, pain meds, etc.

8 bottles antibiotic eye drops

(Also pictured: heparin, saline and other misc push syringes.)

They say a picture is worth a thousand words…

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These pictures don’t include my vitamins, supplements, and natural remedies or all of the things we didn’t keep which would have probably filled our entire living room and kitchen. I think these pictures get the message across. Lyme and co-infections are serious, but they are not being taken seriously until it’s too late. When I went to my doctor in 2007 with a mile long list of strange MS-like symptoms, I wasn’t taken seriously. But even if I had been, there isn’t an accurate way to test someone who has been bitten years before and is still suffering symptoms of an aggressive bacterial infection. I didn’t get a CDC positive result until 2014. My immune system was shut down by the infection. I would not have shown positive on a Lyme test that is made for people who have just been bitten and that tests for their immune response to a recent bite. Why is there not better testing? Why is there not a cure? Why are people still suffering and  having to spend thousands out-of-pocket for treatment?

Tick borne diseases are at epidemic numbers. The CDC reports that the number of Lyme cases is 300,000 and climbing. I believe this number is actually much higher because of the thousands that are misdiagnosed like I was for years. It is only a matter of time before you or someone you love is affected by this disease. Don’t shrug off that tick bite you had last summer and now that bone aching fatigue and joint pain that won’t go away. Don’t let your doctor tell you it’s all in your head. If you know something is wrong, you just know – fight for your own health, no one else will. Take a few extra seconds and do a tick check on you and your kids when you come inside. Do tick checks on your pets. Educate. Be an advocate. Spread Awareness. It is that important.

Please don’t let this become your story.

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Share Your Story

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I walked 2 miles on Tuesday last week. TWO whole miles. For my amazing running friends who run 40 miles a day, do 500,000 mile marathons, triathlons, and run-15-hours-through-mud-athons every weekend, I know this sounds like the warm-up before your warm-up. But for me… it has been years since I could do it. Years. In the past, I have pushed myself to walk around the block, I try to do yoga or light exercise since being debilitated by this disease, but after a long active day, it usually does not happen. To feel that extra energy “urge” and be able to walk that long was HUGE. It was 2 miles without joint pain or muscle fatigue. I felt like doing it and I was able to keep doing it.  

And that’s just for starters! I was able to get out of bed early the next day, get ready, and go full steam like my old self of 4 years ago. Oh, how I’ve missed that self! I didn’t have the energy to wash my hair (this is why I love long hair, top knot it is!) and I almost had to crawl to the shower. BUT, I got ready and spent the day at the zoo with the girls. It hurt later and my body was angry with me for the rest of the week, but I enjoyed the day and was not totally distracted by pain and fatigue.

This week has been a little different. After a few busy weeks in a row, my body has shut down on me a bit. I have had kidney pain and exhaustion, but I have been able to keep up with life, for the most part minus some “sleep half the day away” days. Thankfully, it’s summer and the girls have been ok with lazy days and staying in our jammies.

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I have also had a crazy “Lyme awareness” summer. I have written articles, had two different newspaper write ups about my journey (thanks to a sweet friend who writes for a newspaper) and was interviewed by KMOX for a quick story about the personal aspects of this disease. I was also asked to record a podcast for a friend who has a women’s ministry. Her new series is called “A Call to Courage.” Monday I will be going to a recording studio to talk about my struggle and how God has been my comfort and my peace throughout this never-ending battle. (Prayers appreciated for this!)

But, to be honest with you I have to admit that I get really tired of talking about this disease. I get weary of how Lyme seems to take over my life. I even get bored with the words used to describe this disease.  Chronic.  Late Stage.  Severe.  Neurological.  Remission.  It gets very old, very worn, and very depressing. There are times when I retreat to my room, turn off my phone, put on some Brandi Carlile (not Belinda), pull the curtains tight and push my head as far under the covers as I can.

Some days, I don’t want this to be my story. I didn’t ask for this. I don’t have to talk about it… right?

Wrong.

Yesterday, I was minding my own business, worrying about next week. I was feeling apprehensive about having my voice recorded – sounding vulnerable and small, as I’m sure it will. I was praying about it, but fearing it a little bit, too. Then I opened up my little white mailbox and pulled out junk mail along with some bills, and a simple white envelope with unfamiliar handwriting, addressed to me.

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I wasn’t ready for what was written inside of the little blue lighthouse card. Words written to me, words that reduced me to a humble puddle of tears while I stood barefoot on my porch. I was taken back by the magnitude and simplicity of a beautiful, personal hand-written letter. A woman thanked me for sharing my experience with Lyme in the May issue of the West magazine. Her daughter has been sick for over two years and they have gone to many doctors trying to find the cause of her health problems, to no avail. After reading my story, they asked their doctor to test for Lyme and although he was apprehensive, he tested her anyway and she was positive for Lyme disease. Her words just knocked me over, “I know the Lord meant for me to read your article and I appreciate so much that you shared your story. Ellen now has HOPE because of you, DeAnne.”

Typing that sentence out just made me a mess of tears all over again. I called Annette today and we chatted for a while. It was good for my soul. I gave her the name of my Lyme doctor and we talked about God’s provision and his goodness. I was thankful for her card and she was grateful for my story. We agreed that this was all meant to be. Blessed.

Ellen has HOPE because of how God moved through my story. He is the one who should receive the glory. I’m just thankful my God still uses the broken, the messed up, and those of us who are still in process to help others and bring Him praise. I’m humbled. (And I might still be crying…)

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A friend posted the days excerpt from “My Utmost For His Highest” and I was again reminded that God uses our stories here and now… not later or when the “miracle” or success comes. He uses what we may think is the “just getting through it” part of our lives more than any success or victory. His purpose is in the process. Oh, how I needed to read this! He can walk on the storms of my life right now…

“We tend to think that if Jesus Christ compels us to do something and we are obedient to Him, He will lead us to great success. We should never have the thought that our dreams of success are God’s purpose for us. In fact, His purpose may be exactly the opposite. We have the idea that God is leading us toward a particular end or a desired goal, but He is not. The question of whether or not we arrive at a particular goal is of little importance, and reaching it becomes merely an episode along the way. What we see as only the process of reaching a particular end, God sees as the goal itself. What is my vision of God’s purpose for me? Whatever it may be, His purpose is for me to depend on Him and on His power now. If I can stay calm, faithful, and unconfused while in the middle of the turmoil of life, the goal of the purpose of God is being accomplished in me. God is not working toward a particular finish— His purpose is the process itself. What He desires for me is that I see “Him walking on the sea” with no shore, no success, nor goal in sight, but simply having the absolute certainty that everything is all right because I see “Him walking on the sea” (Mark 6:49). It is the process, not the outcome, that is glorifying to God.

God’s training is for now, not later. His purpose is for this very minute, not for sometime in the future. We have nothing to do with what will follow our obedience, and we are wrong to concern ourselves with it. What people call preparation, God sees as the goal itself. God’s purpose is to enable me to see that He can walk on the storms of my life right now. If we have a further goal in mind, we are not paying enough attention to the present time. However, if we realize that moment-by-moment obedience is the goal, then each moment as it comes is precious.”  -Oswald Chambers 

These words and the words on the little blue card quieted my doubts and confirmed my suspicions… I simply can’t stop telling my story. I must continue to be vulnerable and honest, even when it’s uncomfortable, even when it’s inconvenient and even when my emotions get in the way. I can’t stop spreading awareness and education about Lyme disease. It’s important, it matters and it’s making a difference. Annette and Ellen are proof that our stories matter and we must continue to tell them even when it hurts. If my story can help one person, it’s worth the hours, the research, the writing, the interviews, and my energy. It’s worth every single minute.

Give hope. Give life. Share your story. It just may be what someone needs to hear today.

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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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Products to Protect and Prevent!

Here are some great products that can help you keep the blood suckers off of you this spring and summer!

I have a friend who swears by “Baby Legs” for her little girls when they are outside and she even wears them! They are leg warmers made with Insect Shield technology – built-in bug repellent that’s safe for the whole family! These are a fun way to keep buggies at bay! I have an order in for a few pairs for my girls. They have some for boys, too! I’m excited that the insect repellant that is in these is not harmful to the skin because it’s on the fabric – not something you spray or rub into your child’s skin. The coolest part about this product is that the insect repellant stays on the leggings for 70 washings!!!! You can order some here: Baby Legs

Insect Shield also makes clothing for adults who work primarily outdoors, but they also have basics like long-sleeved shirts, pants and jackets. I’m thinking I should buy a shirt or two! Insect Shield Clothes

I really love this idea for pets. It’s a tag for your pets collar that repels fleas and ticks without chemicals and it lasts for 4 months!

Shoo Tags

I will post more as I find them. Hope this helps you and your family keep the ticks from getting you!

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Five Things You Need To Know!

Tick-Borne Disease prevention is the most important thing you should know for spring and summer. You can prevent a nightmare of never-ending pain, fatigue, debilitating symptoms, thousands of dollars in medical bills, expensive treatments, side effects from medications, years of inaccurate diagnosis and the emotional stress of doctors not believing you or having no idea what to do with you as a patient. It is the hardest thing I have ever gone through in my life, but it is now my mission to educate others on Tick-Borne Diseases.

Unlike many diseases, this is one you can hopefully prevent just by taking simple precautions and educating yourself on Tick-Borne Disease! It’s not just Lyme Disease that ticks can transmit. There are many tick-borne illnesses that are as bad, or worse than Lyme. Here is a list of the most common Tick-Borne Diseases: Bartonella, Babesiosis, Enrlichiosis, Rocky Mountain Spotted Fever, Spotted Fever Rickettsia, Anaplasmosis, Tick-Borne Relapsing Fever, Southern Tick-Associated Rash Illness, Encephalitis, and Tularemia. A new one was discovered a few months ago called the “Heartland Virus.” There is no permanent cure for Tick-Borne Disease!!

As my blood tests indicate thus far, I am infected with Lyme, Bartonella and Babesiosis. It is possible to contract several diseases from ONE tick bite. One of the most awful parts of having this disease is the knowledge that I probably could have prevented these diseases, had I only been aware of the facts. I wish I had known how dangerous ticks can be and how seemingly impossible it is to eradicate the bacteria from your body. So, if you’re reading this, consider yourself warned. Please don’t let this information go ignored.

Here are my top five things you should know to prevent Tick-Borne Disease:

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1. Be AWARE. Just the simple knowledge that most ticks can transmit some form of disease can help you. You will be more aware of your environment, you will keep your eyes open for creepy crawlies on yourself and your kiddos and you will make sure to keep your pets and yard protected – all year round! Do a search online for “diatomaceous earth” – it’s natural and it will keep your yard free from ticks!

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2. During the height of tick season in spring and summer, cover yourself and your clothing in bug repellant (DEET or permethrin) while you or your loved ones are outside. You can even use natural essential oils like Eucalyptus to keep the ticks at bay. Here are some good tips for using Essential Oils – Natural Insect Repellant. To protect yourself from risk of exposure to Lyme Disease and other Tick-Borne Illnesses, you should avoid areas that are likely infested with ticks. When hiking or camping, wear light-colored clothes and long-sleeved shirts, so you can easily spot and remove a tick before it becomes attached. Since ticks are close to the ground, tuck your pants into your socks and wear high rubber boots to minimize exposure.

This is the size of ticks in the height of tick season. They are hungry and will attach to any warm body! Nymph ticks are so hard to spot, especially if it attaches to a belly button or in between your toes.
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Inspect every bite!

3. ALWAYS, always, always do tick checks after being outdoors! I simply cannot stress this enough. I know it sounds like a time-consuming annoyance, but it only takes a few seconds and it could save you from a lifetime of pain and misery. If I had known to do this, I may have not gotten this incurable disease. My girls do tick checks as a habit now – even if they have only played outside for a short time. It has become part of our routine – just like brushing our teeth and taking a bath. It’s another way they know to take care of themselves. My girls have seen first-hand what this disease can do and I guess that is why they have never questioned our routine tick checks. Believe me, it is worth the short time it takes!!

A deer tick feeding on human blood
A deer tick feeding on human blood

4. If you do find a tick attached, take my word for it and DO NOT take any chances. Better to be safe than sorry. Learn how to detach and kill the tick the correct way so as to keep it from transmitting the bacteria (click here for instructions). Make sure you save the tick in a zip lock bag in case you start experiencing symptoms. It is easier to test the tick for disease. The tests for Lyme and co-infections for humans are terribly inaccurate and unreliable. Also, demand a round of antibiotics from your doctor after the tick has been found. For the record, it is inexcusable that doctors have no problem writing prescriptions for years worth of antibiotics for ACNE (!!), but not for a disease that destroys your quality of life and can cause death. I have read far too many testimonials of Lyme sufferers who assumed that since the tick was attached for a short time, they wouldn’t get sick. They wound up with Lyme, as well as co-infections. The CDC and ISDA perpetuates very outdated information. It is your body and your life. You have to be your own advocate. No one else is going to do it for you.

two-part mono cutout for pix daily tues

5. Last but not least, know the early signs and symptoms of Tick-Borne Disease! Here are just a few:

  • Body/muscle aches
  • Fever
  • Headaches
  • Fatigue
  • Joint pain
  • Rash
  • Stiff neck
  • Facial paralysis

Many people suffering from Tick-Borne Disease did not have any early symptoms. You may be perfectly fine one day and the very next, unable to walk. Every case is unique because of how the bacteria affects each person differently, but the eventual later stage symptoms are similar – severe fatigue, joint pain/inflammation, IBS issues and neurological problems to name a few. Early symptoms may not be reliable, so your best bet is to immediately get treated if you find a tick attached so your risk of contracting chronic Lyme disease is diminished.

The key to this disease is to fight back with awareness, knowledge and prevention. You can still enjoy the outdoors and have a fun summer, if you take these precautions. In doing so, you will have the peace of mind that you are keeping your family safe and healthy!

These are my favorite links on Lyme and Tick-Borne Disease prevention. Thanks for reading!

http://www.tickencounter.org/

http://tbdalliance.org/get-informed/start-preventing

http://www.ilads.org/lyme_disease/lyme_tips.html

Prevent, Educate, Advocate.

XOXO, DeAnne

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Test Results, Double Rainbows and a Worldwide Protest Rally

Double positive sounds like a wonderful thing, but in the world of Lyme disease and tick-borne illness it is unfortunately the opposite of a double rainbow, double ice cream scoop, or a double order of fries. My IGeneX lab results from my LLMD appointment came in the mail today. It’s awesome to hold in my hand a piece of paper that primary care doctors will respect (a sick girl can hope, right??!) The microscope pictures of spirochetes in my blood apparently meant nothing to all of my doctors except for the one that took them. The only problem is, these blood results that provide medical validation from one of the best labs in the world came about three years too late.

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One of the many reasons IGeneX is far better than other labs is because their Western blot tests for an IgM result, as well as an IgG result and it can detect late stage Lyme. The current Western blot (given by other labs) was specifically designed for early Lyme disease, hence the reason for so many false negatives if symptoms have been present for a long time. This was true in my case. I have had previous doctors test me several times for Lyme over the years and it always came back negative, which is the main reason it took me so long to get an accurate diagnosis. By the time I was tested for Lyme, my body had been fighting it for so long that an early Lyme test kept coming back negative. I was unknowingly battling Late Stage Lyme Disease.

IGeneX Western blot can detect all phases of Lyme, Lyme antibodies from everywhere in the US and even has the ability to detect infection by every strain of the Borrelia bacteria. I know this is Greek to most, it was to me a year ago – but basically, all this means is that “IgG” tests for the presence of past infection and “IgM” tests for a current infection in the body. My results were double positive, meaning I tested positive for both tests and now I have on paper what I already knew, that “Chronic” or “Late Stage” Lyme Disease is the accurate diagnosis. My body could have been fighting this illness for 3 years or 25 years… that is something I will never know because of how the disease works. I believe I am on the right track pursuing treatment with long-term antibiotics. From all the research I have done, long-term/high dose antibiotics is the most effective treatment to kill a bacterial illness as complex and complicated as Tick-Borne Disease.

Most LLMD’s treat based on the severity of symptoms (a clinical diagnosis) regardless of test results because of the unreliability of most diagnostic tests. My LLMD was already treating me for Late Stage Lyme Disease but, I was thrilled to get a blood test that clearly showed that I am, in fact fighting a tick-borne disease. Personally, the test – along with the pages of confusing medical jargon that came with it – was validation like I have never had before. In the end, that is even better than a double rainbow.

Bowron-Lake-Rainbow-double-fin-web

After years of suffering with an invisible illness, I have a piece of paper that definitively unveils the culprit  – from a medical standpoint, anyway. Many people who are unknowingly suffering with Lyme will not even get that far. Because it mimics other diseases, Lyme has been grossly misdiagnosed for decades as MS, Fibromyalgia, Lupus, Parkinson’s, ALS, Chronic Fatigue Syndrome, Arthritis, Bipolar, and many other devastating diseases. I am praying for the day to come when someone can walk into their primary care doctor’s office with a list of symptoms written down (as I did three years ago), and instead of a roll of the eyes and being handed some antidepressants they will get an accurate diagnostic test that will give them the real reason for their drastically altered way of life. I shouldn’t have had to wait years, spent thousands of dollars on doctors, specialists, countless tests, and unecessary treatments and endured the psychological pain, frustration and chaos that an undiagnosed disease creates. If the general public gets proper access to better lab testing, thousands and thousands of people will get the relief, treatment, and hope that a correct diagnosis brings.

I write about the details of Lyme testing to urge you to spread Tick-Borne Disease awareness in your part of the world. Get educated. Get involved. More awareness leads to more knowledge and the more knowledge the general public has, the faster the mainstream medical community will take Lyme Disease sufferers seriously. If we are taken seriously, then hopefully it will become gravely obvious just how important accurate testing is for this deadly disease. I have been brutally honest in my past Lyme posts for a reason. I am passionate about prevention and awareness, but even more passionate about changing the CDC guidelines for Lyme, as well as making sure it is a priority to start funding the research desperately needed for better Tick-Borne Disease testing. If insurance had paid for treatment of this disease, a fellow Lyme fighter would have been better equipped to overcome it… instead he lost his battle last Friday. He was only 29 and left a wife and two young girls. Lack of awareness is the same as ignorance. I must tell the truth and shed light on one of the darkest secrets in the medical world. I cannot, in good conscience, stand by in silence. Lives are being lost. I plead with you to raise your voice with me in this fight.

lymeribbon

These are some of the issues that Lymies are trying to bring awareness:

* Lyme patients from all over the world feel they are being ignored and even being denied treatment for tick borne illnesses such as Lyme Disease, Babesia, Erlichisois, Ricksettia and Bartonella.

* Demands are being made for accurate testing, proper treatments, and admittance that Chronic Lyme Disease is real, serious and potentially fatal.

* Patients want to know why the IDSA is being used by the CDC for their guidelines in the treatment of Lyme Disease, even after Attorney General Blumenthal’s investigation found them biased and the guidelines flawed.

* Lyme patients are asking that the healthcare community be better educated in order to effectively diagnose and treat patients with Chronic Lyme Disease.

* Lyme patients are stating that independent funding for medical research into Lyme Disease testing and treatment are needed.

Below are links about the Worldwide Protest that is happening in May. I encourage you to support those who are fighting and those who have lost their fight with Lyme Disease. 

Love ya’ll!   

XOXO, D

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Facebook Worldwide Protest US
https://www.facebook.com/pages/Worldwide-Lyme-Protest-US/111527755675190?fref=ts

Official Website
http://worldwidelymediseaseprotestus.blogspot.com/

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Health Forms and 6 Year-Old Drawings

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I am sure I have filled out hundreds of forms for doctors in my lifetime but the massive packet I’ve been working on for my Lyme appointment has caused some “a-ha” moments for me over the past few weeks. When the details and health history of Lyme is written down and checked off, it is obvious to me just how crazy and serious this illness really is. This symptom list about Neurological Lyme, in particular got my attention.

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I didn’t have any “No’s” on the entire list. It was scary but oddly comforting to have a packet of information in my hands from a Lyme specialist who KNOWS that these are Lyme symptoms and wants to help. Not only does he believe Late Stage/Chronic Lyme exists, but he has dedicated his entire practice to Tick-Borne Disease to help those who have been outcast by other doctors who don’t know what to do with such symptomatic patients. It hurts to read these forms and see my symptoms laid out in black and white. It almost makes it too real. But to have it validated in such a strong, defining way brings comfort and encouragement.

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These pictures were in Cammie’s school folder last week and they also bring me comfort and encouragement. When I asked her about them she said she was worried about me that day and wanted to tell her teacher about Lyme Disease.

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She said this is the bacteria in my body.
And more...
Here is a real slide of the spirochetes (the wormy looking things around my blood cells.) I think she did a great job!

She told her teacher that I take a lot of antibiotics for Lyme. Her teacher wanted to make sure I knew what she had written. :)

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This says, “I am sorry that you are sick.”

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It makes this mommy upset that my Kindergartener thinks about all of this when she is at school, but at the same time I love how it shows her overwhelming empathy and love. She has watched as I have been passionate about spreading awareness and education for Lyme. She has been with me in doctors offices who didn’t believe me and in turn, witnessed the days when I was forced to be my own advocate. She has heard me teaching others about this disease and here she is at school being an advocate for me and teaching her teachers about tick-borne disease. If only we could all learn to be this way for our family and friends. I learn so much from my girls. They inspire me to be a better mother, a more thoughtful friend and a more caring person. I am challenged to be more.

Who can you be an advocate for today? How can you be more in your life?

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