Fight with Shannon

Shannon is battling a rare combination of tick borne illnesses that have caused heart complications on top of a lacking immune system. On this page, you can find Shannon's full story, updates, a place to donate, and a place to send words of encouragement, etc.

Fundraising Goal: $30,000

Raised: $3,610.48

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If you would like to support Shannon and her husband through this difficult time, please click the button below for a safe and secure donation.

For questions, please contact Amber Meredith

417-664-2290

Other Ways to Donate:

Venmo: @madnesslikeher

Mail: P.O. Box 86 Conway, MO 65632

Send Shannon a Note of Encouragement

Shannon's Full Story

Shannon started showing symptoms over 8 years ago. During that time, she sought out four different doctors and went through many tests. The doctors all gave her the typical response of needing to eat better and get more exercise, despite Shannon being very active and a conscious eater. She was diagnosed with multiple autoimmune disorders, with suggested treatments and diets for these disorders never changing anything. 

Shannon's symptoms continued to worsen until she could barely function on a normal basis. This involved not being able to get out of bed, constant high fevers, no immune system so that she caught every bug, and much more. At this time, she gave in and sought out a specialist who dealt with strange, undiagnosed symptoms. After a battery of detailed tests that showed her body was being hit hard, Shannon was given a tick panel that came back loaded with results. Her doctor stated that the panel was "lit up like a Christmas tree" and she was lucky to be alive. She was officially diagnosed in June of this year, after things had already gotten to a breaking point.

It's important to note that tick borne illnesses have variations called "species." This is because they are bacterial, protozoan, and parasitic illnesses. Shannon was diagnosed with Lyme Disease (3 species total), Bartonella (2 species total), Tick Borne Reoccurring Fever (2 species total), Babesiosis, and Borrelia Miyamotoi Disease. Most of the species are rare or extremely rare. It is believed that she is only the 25th person in the world to contract one of the species. 

Treatment has involved an unavoidable process called "die off." Because Shannon was left so long with so many illnesses, the species had plenty of time to populate every inch of her body. Die off itself can cause more damage and even death to the patient if it's not approached properly. So, navigating it has been what her doctor calls "a gray area." Large amounts of bacteria are being flushed into her system, causing symptoms to get much worse, during the process. Since Shannon was already very sick and was suffering from head to toe, the die off and treatment hit harder than they even prepared for.

Shannon's heart has been severely affected, on top of treatment keeping her very sick. This has left her bed-ridden and unable to get around easily. At any moment, more symptoms could appear or worsen, leaving her in a very vulnerable state. They have had to slow down treatment in order to address her heart, which has caused things to take much longer than first expected. With being so sick, Shannon and her husband, Jay, have had to halt their photography business altogether, which was the entirety of their income. 

Her husband, Jay, is her caretaker 24/7 as most days, even getting to the bathroom can be rough. Due to this, he has been unable to go get a new full time job. They've depleted their savings and sold everything they can to help make ends meet. Due to the type of facility that treats her, they have to pay in full for every visit before they leave. They do not have health insurance, causing everything to be out of pocket, on top of it all.

If you know Shannon at all, you know she's a hard worker and is fighting as hard as she can to get better and return to her business, music, etc. that she loves so dearly. Continued prayers are always welcomed as Shannon stumbles through this intense battle. 

Update 11-6-2022

Shannon has officially been wearing the heart monitor one week today. She has one more week to go with it on. She said it's itchy, but pressing the clicky button is pretty fun. She sees the cardiologist the 17th and the results of the monitor will be in the week after that.

The beta blockers haven't helped any of the heart symptoms, so her pulse and blood pressure continue to stay at a higher level, even at rest, and spike with any movements. This leaves her with a lot of pain, swelling, puking, etc. She has caught a cold due to a weak immune system, which has not added fun symptoms, including barely being able to squeak out words from losing her voice. She's feeling rough, but is beyond grateful for the love and support.

Phone meeting tomorrow with the doctor to see if they're officially taking her off the doxycycline and switching her to another form of treatment. She has been on doxy for 5 months, with improvement in some areas, and not so much in other areas. 

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Update 11-7-2022

Shannon spoke with the doctor today about more changes since symptoms have not changed since the reduction in treatment. The doctor went ahead and put her back on one of the medicines from the second stage of treatment, but didn't change anything else. She wants to do little steps since everything is so sensitive right now. However, she's confident the medicine is not a problem for the heart and decided to put her back on it in order to keep the tick borne illness symptoms in check. Shannon also found out that she was accidentally taking only half of the intended beta blocker for her heart, due to an error from a past nurse. So, hopefully that will make a difference in the days to come. 

Update 11-9-2022

Shannon took every ounce of energy she had to get out and vote yesterday. She said it was worth a few minutes of pain. Those 15 minutes brought an immediate 2-hour nap. She woke up to hives, which happens randomly. The cause is unknown. Her cold symptoms are subsiding, offering a bit of relief where that's concerned. It's day three for the new medicine the doctor added on and there hasn't been any bad side effects. Such a relief since every new medicine tends to be a couple weeks of intensified symptoms. Pain, nausea, puking, intense swelling, and heart issues are still a daily, constant plague at this point. 

Shannon feels bad there aren't more photos to share, but due to the swelling and her overall sick appearance, pictures cause a lot of mental anguish for her. Due to this, we are foregoing photos involving her at this time. 

Today is medicine refill day. This involves filling around 56 cavities with over 30 daily medications, most of them needing to be taken more than once a day. This is quite the chore for her, but she's the only one that can keep track of them all, along with the daily schedule. She has to start the day early with one medicine, wait two hours, take the second medicine, wait an hour, take two more medications, wait 15 minutes, then take a large pile of medicine, work through her liquid medicines throughout the day, then end the day with another dose of medicine, wait two hours, and finish with another pile of pills before bed.

 

It takes over an hour to refill everything and tends to make her fever spike for the process. Once finished, her body demands sleep for a few hours. On top of it, two of her kitties and one of the dogs has to see the vet today for ongoing medical issues that have to stay in check. Jay has to leave her at home while he takes the animals in his truck, since their secondary car is broken down for the time being. Today will be a wild day. 

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Update 11-13-2022

Shannon's heart monitor is officially off!! She said the sticky remover it comes with is worthless and she's going to be sticky forever. It has to be sent to the company that makes it for them to evaluate the findings. A few days after they receive it, the information will be sent to her doctor. It's supposed to be a quick process. So, the results should be available just before Thanksgiving. She will see the cardiologist this Thursday in order to have other testing completed, if needed. 

She's been on the new medicine one week today. What we initially thought were cold symptoms going away, is most likely die off symptoms from the new medicine as it's been a rougher week, and those symptoms haven't disappeared. This is always expected with a new medicine as it starts killing off more, and other, types of bacteria in the body. This results in the die off affect being a bit more severe. We had hoped it wouldn't be present with this one. By itself, it wouldn't be so bad, add on the other complications and it makes it feel terrible. 

Another medicine is being added tomorrow. This will most likely not add anymore symptoms that aren't already happening, so it's a safe addition. However, it will add another level of strength at fighting the Lyme and Bartonella. We're praying it doesn't cause any strange symptoms and make things worse, as it's such a gray area dealing with this entire thing. 

Shannon is struggling a bit with the holidays rolling around. It was hoped that by this time, she would be mostly back to new. However, things were much more severe than anticipated and it's been a long road, with no current end in sight. Please include the mental aspect of all of this in your prayers. We appreciate everyone.

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Update 12-6-2022

The cardiologist said the nurses shouldn't have told me the blood flowing back into my heart was something to worry about. He called me personally last night and let me know that that regurgitation happening was normal and wasn't even something that needed to be revisited in the future.

He compiled all my medical information from my primary care and read through it after reviewing all my testing and said that I didn't need any further testing for now. He said with the level of bacterial infection from the tick borne illnesses and the fact I had a very bad case of Covid a year ago, my heart is just working extra hard, but it's doing a very good job and is even healthier than most my age.

The stinky part is that there's nothing that can be done about most of the current symptoms and he said it will still hurt and be limiting until the underlying issues causing it (intense infection) are resolved. He didn't like where my blood pressure was and added another blood pressure pill.

So, now continues the long haul of treating the five tick borne illnesses and dealing with the symptoms as they come. My treatment center has a new machine for people like me. It's similar to a dialysis machine but cleanses and oxygenates the blood and is great for people with intense infections. They had a smaller version of this concept, but this is a souped up version. I wasn't able to use it until it was confirmed that my heart could handle it. Now that it's been confirmed, it's time to use the machine! Retesting happens in a couple of weeks to see if treatment needs to be adjusted again.

WHEW! It's been a wild ride and I wish it were over now, but this is the part where hunkering down and weathering the rest of the storm is a must. I appreciate all the prayers.

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