Help Lisa's Chronic Lyme Treatment
For those who would rather watch a video aND experience more emotion than text can give, I did my best to explain and express everything in this video, though the quality is poor.
The following is better organized and laid out for those who like facts and logic.
Chronic Lyme Disease is a hotly-debated illness with much controversy surrounding it. The Center for Disease Control does not recognize it as a legitimate illness even though the statistics of tick-bourne illnesses is on the rise. Cases of Chronic Lyme Disease have reached epidemic proportions, even causing some experts to compare it to the rise of HIV and AIDS in the 1980s – not because of the similarity in illnesses, but because of the similarity in response. It is misunderstood, stigmatized and ignored. Insurance companies lose money on chronic lyme patients and doctors are either uneducated or told not to treat chronic lyme or even talk about it when patients come to them with complaints that sound familiar.
I found myself going to my doctor with such complaints in the summer of 2014. Already suffering severe GI issues from what we think was an intestinal parasite caught while in Honduras, I developed severe muscle and joint pain as well as debilitating fatigue. I was bedridden much of the time and when I did have the energy to get out of the house, I went from one doctor to the next fighting for some help and any level of respect. The stories I could tell you are horrifying.
Many people with such complains – muscle/joint pain, debiliating fatigue, brain fog, confusion, depression, irritability, severe body sensitivity, and more – get diagnosed with Fibromyalgia and Chronic Fatigue Sydrome and I was no different. I thought that was the end of the story because despite my symptoms increasing and my quality of life worsening, my doctors kept telling me there was nothing beyond antidepressants and pain relievers that would help me and – worse yet – it was all in my head. I even started to believe them because they are doctors - why shouldn't I believe them?
People with “invisible illnesses” (fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, multiple sclerosis, Reynaud's phenomenon, and a host of other problems) get pigeonhold as hypochondiracs and overdramatic, attention-starved folks who merely have mental health problems. You can't see our illnesses because they do not show up on our bodies like visible illnesses do. You look at us and we “look fine.”
“You look great – you can't be sick.” I have heard that many times. While people mean well, they do not realize I have lost 80 pounds in three years – only through illness and stress. I cannot walk normally due to pain and my stumbling over sentences or random twitches are rarely seen by the average person outside the home.
While being treated with antidepressants and after pain relievers did nothing to help, I was told to “just deal with it” even though my symptoms increased exponentionally. “Brain fog” made talking more difficult and my family got used to me forgetting words mid-sentence or saying something that made no sense at all. I watched my ability to write dwindle (if you know me you know writing is my life's work) and my ability to multitask disappear. It was not unusual for my kids to not see me at all after school because I was in bed with severe pain all over my body or with limbs feeling like hot lead, unable to move.
After an integative doctor already suspecting I might have lyme, I was ironically bitten by a tick on April 28th of 2015 and was treated immediately with short-term antibiotics. As any Lyme Literate Doctor (LLMD) knows, short-term antibiotics don't always eradicate the illness. Two weeks after that incident I noticed neurological symptoms increasing, such as involuntary muscle spasms/twitches and my arms, hands, and feet becoming numb. My forgetfulness and "out of it" feelings increased as did my mood swings and overall fragility. Light and noise sensitivity further isolated me from friends and family and I must now rest more and avoid highly stimulative environments.
As the neurological symptoms have increased in recent weeks, I have been agressively searching for a LLMD. To learn about why doctors who treat chronic lyme must take special precautions to protect their practices, watch the documentary, “Under Our Skin” on YouTube and go to www.ilads.org. There is much written about the controversy between ILADS and the IDSA on whether people have this illness – even though it's reached epidemic proportions and people are dying from it.
My first LLMD appointment is on June 11th. Appointments, labs, and treatments are not covered by insurance when you see a LLMD so everything is out of pocket. We are using all of our savings to go to this first appointment and pay for any lab tests ordered. I am using this gofundme to humbly ask for any help that you might be able to give in order to get me beyond this first appointment and to find the best treatments possible before this spreads to more areas of my body. I urge you to research chronic lyme, yourself, so that we can all become more educated and aware about this horrible disease.
I know I run the risk of being judged for “pan handling” or “begging.” We have been blessed by numerous people over the past year who have donated their casseroles and grocery bags to help us as we get by the best we can. My gratitude is endless. It's hard to help someone with a chronic condition because the giving can only go on for so long. Everyone has their own burden to carry.
Because we now face a new and bigger financial hurdle, I've decided to try this vehicle of fundraising to raise money for treatment. With three stepchildren who have high needs, themselves, and require much attention, focus, and resources, my health has had to take a back seat while we make sure our family is functionable. What we have found, however, is that as my illness worsens, the family is more strained and stressed which adds to the therapuetic complexity we are already trying to address.
The goal of $2500.00 would cover a second appointment to address the results and needs the LLMD finds. With a positive or even a negative result of lyme comes numerous co-infections such as Babesia, Bartonella (which has been suggested to me that I have), Erlichea and Anaplasma, among others. One office visit is around $400, not counting labs that will need to be done. Those tests run between $100 and $800. I don't know what stage of this illness I am currently in, but I will know much more after June.
Now that we have a direction, we need help getting there. I ask you to search your hearts and if you feel led to give, thank you from the bottom of my heart. No amount is too small. If you cannot give financially, I ask that you share this gofundme drive with anyone you think might be interested. And, finally and most improtantly, I ask for your prayers – not just for healing, but for the restoration of my family, whom I love so much.
My kids need their stepmom back. My husband needs his wife back. I need myself back. I want to be able to write again, to have the use of my hands, the ability to walk. I can't continue to be overwhelmed by such a mysterious illness that the typical doctor only invalidates and I can't keep quiet out of shame, pride, or fear. There is a certain freedom in sharing your struggles, as long as you do it with dignity. I hope you know I am requesting help with dignity and respect.
Not everyone wins this fight. Not everyone is able to receive the necessary treatment. If my health improves because of future treatment, I am going to be an advocate for those who remain unheard. And if my health does not improve, I will still continue to have a strong faith and strong love for my friends and family. Illness can never take that away.
Thank you for being a blessing in my life and for any help you or someone you know might be able to give.
We are investigating a new and drastic treatment (as if getting stung by bees wasn't drastic) that we hear has a high success rate for some. Of course it comes with a massive price tag, as all treatments do. There just isn't any funding for research or grants! No conclusion from the CDC that chronic Lyme is as rampant or devastating as we who have it know it is.
Please pray that we will somehow get a miracle that enables us to get this new treatment. I'm not ready to share what it is yet, but if I go for it, I will update you.
It's getting to be warmer weather. Please remember no one is immune to Lyme. Educate yourselves on tick borne illnesses. Protect yourself and your family with that knowledge. And when the opportunity comes to write your local government to rethink its laws on Lyme standards of treatment, etc, take part!
Thank you and God bless.
I've had two LLMD appointments now, totaling approximately $4000.00. I hope that shows you just how much your donations have helped. The lyme has definitely turned neurological as I begin treatment and am experiencing focal seizures (this is brand new), severe central nervous system symptoms, finding out what co-infections are at play: Bartonella and Babesia, to name a few. Daily life has changed dramatically. The physical, emotional, and mental effects are enormous - even as I am being treated. One thing of many I have learned along this journey is that there are many types of treatments and many types of lyme-literate doctors. It's a lot of trial and error, which is hard to understand when you've been used to the traditional medical model.
While in treatment for chronic lyme, you often get worse before you get better, a bit similar to receiving chemo for cancer. My doctor has told me I have one of the more aggressive cases of Bartonella and Lyme that he has seen. Treating aggressively means that the side effects are aggressive. That is what I am in the middle of now. I still cling to hope and try to find any way I can shine a light in this dark place. I have learned many lessons from people like Joni Eareckson Tada and Kara Tippets - to love and live with grace. It's not always easy, but as one of my favorite songs says, "I didn't promise it would be easy; I only said it would be worth it."
For more updates, please visit my blog at
Thank you for walking this far with me. As always, it is never too late to give. I hope to keep this campaign active as long as you all will let me. I appreciate the opportunity to share this journey with you and, hopefully, teach you about a little-known illness that is becoming ever-so-much more prevalent in our world.
I'm experiencing much fatigue and pain as the nice weather comes and goes, which is a shame because I so want to enjoy that nice weather! My mood has been better, overall, which I attribute to both diet and meds/supplements. In talking with other chronic lyme sufferers, I'm realizing that this is a very slow process but if you are slow and steady, you win the race. The prize might not be a cure, necessarily, but certainly remission. So I remain hopeful, as always, and appreciate your love and prayers. Thank you so much!
For more lengthy and poetic updates, you can visit my blog at www.lymeandacoconut.wordpress.com
update on insurance: my insurance denied all claims. They will cover nothing. :(
Thanks for the note, Lynn. Good insurances may cover some blood work but mine only covers basic blood panels. The tests that go deeper are out of pocket. I wish you well in your journey
I've had lyme for 23 years, just wanted to tell you insurance usually pays for most labs and tests.