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Blog: Living Mighty Well

Spoonie Stories: How You Can Raise Money for Lyme Treatments

My name is Heather. And this is my story.... I have been ill for many years, being diagnosed with multiple things, from fibromyalgia, to arthritis, IBS to TMJ... But this past summer (2015) everything got 10x worse. After many months of seeing (even more) specialist after specialist, I made it to a Lyme Literate Medical Doctor who is over 3-hours away from me. After a ton of test results, I was formally diagnosed with lyme disease. After many years, I finally know what is making me so deathly ill. Something I've most likely had for many years, and it was overlooked, was made worse over the summer by an unknown bite... 

e8143e_439e70346b6f4832adf38c89e32e6c04On top of the the loss of quality of life, my financial situation has hit an abysmal state. In order to get the treatment I need, which can reach thousands out-of-pocket, even with insurance. It's nearly impossible to get insurance companies to cover chronic Lyme treatment, since the CDC doesn't acknowledge the existence of late stage, chronic Lyme. I'm seeing a Lyme Literate Medical Doctor for treatment who does not accept insurance at all. After much testing, I have been diagnosed with Chronic Late Stage Lyme Disease, Babesia, Bartonella. Mycoplasma, Erlichia, and Hashimoto's Disease. I tested with a DOUBLE Positive, meaning Positive on the IGENEX, and CDC Positive as well.

 
This year, my quality of life has decreased so much that all the things that bring me joy have been completely impossible to participate in or enjoy at all. Lyme has infected every single part of my body, from the tips of my toes to the depths of my brain and heart, it has caused everything that brought a smile to my face to be robbed from me. I feel alone, a burden to others...
 
A lot of people think that Lyme simply makes you tired, with small aches and pains. They don't associate major nerve pain and neurological issues with Lyme. A lot of people think that Lyme is simply treated with a couple weeks of antibiotics and then you're fine. They don't realize that misdiagnosed and untreated cases turn into a late stage, chronic form of the disease that comes with other Tick Borne Illnesses, all of which are allowed to satiate the body, since the immune system is so terribly compromised. The amount of neurological issues and symptoms that I have because of this are obscene!! I have a daily fever, an insane amount of pain, and am left untreated due to Lyme ignorance, especially in the medical community, of which I am appalled!!
 
Imagine, not only having a terrible, chronic illness, but having to worry about whether you are going to be able to afford the medication necessary to treat your illness. Imagine knowing that without having a helping hand, you'll never be able to feel real joy or bring real joy to other people's lives again. It truly is a scary thought. The holidays were very hard on me, I could not enjoy them. .. I was in the hospital twice the week of Christmas. I was not only dehydrated but had a lung infection.  :( Currently, oral treatment with antibiotics got me really ill, so I am getting a PICC line next. I am hopeful that IV treatment will lead to getting me some life back.
 
My further treatment will involve several antibiotics, anti-malarial drugs, chelation therapy, many herbal supplements, detoxing, etc.
 
I feel like I'm floating above my body just existing in a fog. My quality of life has been diminished to nothing, and if I don't get help,  my time on this earth will be greatly diminished as well. Living from a bed is no life for anyone. Being extremely sick is hard enough, but trying to raise the money for treatment to get well is almost impossible it seems. I have so many reasons to be well, but through this battle I have learned that Lyme is my life. I know I now have a greater purpose. Right now, I help anyone I can by spreading awareness and advocating for this monster disease, but when I get well it will be on a much larger scale. My motto is "TOGETHER WE CAN!" We should all do our part in spreading awareness so that we can create change for better results and less suffering. My journey is very far from over. Even though I wouldn't wish this on anyone, I am blessed to go through it and be given a higher purpose.
 
I have a Fundraiser running (slowly) to help me get my PICCline and pay for my doctor fees, etc. Please consider donating, as I need your help. Above all, please pray for me. My wish is that a cure is found for Lyme. Bless you all. <3 GoFundMe- http://www.gofundme.com/jm6ikc
 
Read more about chronic lyme disease at: CHRONIC LYME DISEASE SYMPTOMS

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