May is Lyme Disease Awareness Month
The name of my lyme blog is “When Life Hands You Lyme” — founded in May of 2013.
When Life Hands you Lyme…“You find ‘Lyme Aid’: Help from God, friends, family, doctors, non-traditional medicine & others in your same situation. You do everything you can to fight and survive-you ready yourself for a physical, emotional & spiritual battle that occurs within your body that can be dark, isolating & agonizing at times. However,
fighting Lyme will leave you with deeper spiritual companionship, a stronger connection to yourself & others & a greater appreciation of God’s creation.”
When Life Hands you Lyme was and still is a cathartic way for me to tell my personal story about living life with Chronic Late Stage Lyme Disease, Babesiosis, and Bartonella. I send love and healing prayers to those who read this with the hope of spreading much-needed awareness and helping my fellow Lyme Warriors in their fight to conquer Chronic Lyme. I hope that sharing my story will help provide ‘Lyme-Aid’ to many.
A few years ago, after being sick for over 10 years, I stopped hiding my health issues and my disease. I am an incredibly private person and until May of 2013, I only gave specifics of my illnesses to those closest to me.
I did it to protect myself; build barriers, so that I would not appear weak. But mostly, I now believe I did it because of my pride.
I have always taken very good care of my physical-self, working out very hard and eating healthy.
Having people know that I was ‘sick’ was embarrassing to me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation, especially with my male friends. It was never something I was comfortable sharing.
Starting as a freshman in college, every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors’ best efforts. Finally, in June of 2012, I was diagnosed in DC by one of the leading Lyme Literate Medical Doctors (LLMD), as having Late Stage Chronic Lyme Disease and several co-infections, including Babesiosis and Bartonella.
All of the diseases I had been diagnosed with through-out my lifetime were caused by Chronic Late Stage Lyme Disease as well as it’s co-infections, which are often worse than the Lyme itself. I, along with most Chronic Lyme patients, have several co-infections, but I will only cover the two worst ones I have. The first, and most difficult to treat is Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms (called “Malaria at it’s worst”). The second major co-infection I have is Bartonella. Bartonella henselae is the causative agent of the notorious cat-scratch fever, endocarditis, and several other serious diseases in humans. It is not uncommon for patients to contract encephalopathy.
This diagnosis of Late Stage Chronic Lyme Disease (CLD) was like an umbrella–it covered every single illness I had ever been diagnosed with (see below), because those illnesses are all symptoms of CLD. CLD is known as “The Great Imitator” for mimicking over 350 diseases such as MS, ALS, Parkinson’s, Alzheimer’s and Rheumatoid Arthritis, to name a few. My sister, Julia, was diagnosed with Juvenile Rheumatoid Arthritis at the age of 2 and we have recently learned that her JRA was actually caused by Lyme Disease that we both contracted in vitro. Click here to read her Here is a list of the diagnoses I received over my lifetime that were caused by CLD:
Malignant Brain Tumors
Mitral Valve Prolapse
Pelvic Floor Muscle Dysfunction (High Tone, Rated: Severe)
Pelvic Congestion, Tumors in Pelvic Floor, Appendix Stones
Severe Hormonal Imbalances
Arthritis: Left SI joint and Left Knee, Narrowing of both SI Joints, Abnormality in Cervical Spine
Pain Induced Panic Attacks
Severe Muscle Spasms
Symptoms of Multiple Sclerosis
Symptoms of Parkinson’s Disease
Post Traumatic Stress Disorder
Fibrocystic Breast Disorder
Complex Ovarian Cysts
Abdominal Hernias (2)
Relieved that I now had a reason to why I was not getting any better from previous years of treatment and all three pelvic surgeries, I began telling my local doctors the ‘good news.’ For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. We all thought I would be severely sick the rest of my life and never truly get any answers. I was advised to have my eggs frozen, as my reproductive system would eventually fail. I knew that treatment for CLD would be grueling, but it was much more favorable to go through years of torturous treatment, put it into remission, and move on with my life than to live a life of chronic illness, wondering why I would never get well.
I quickly learned that CLD carries many negative connotations and many are extremely skeptical, especially in the South. I had some doctors tell me that it does not exist, others that it does not exist in the South (although research has proven otherwise). I was written off by most people, some friends telling others that my disease was not a big deal and I was just being dramatic, craving attention, or say that I brought it on myself. At that point in my life, to have those closest to you turn on you so vehemently can leave many emotional wounds.
I became very isolated, partly due to the heartbreaking reaction of others to my diagnosis but mostly due to the nature of the treatment. The protocol to treat CLD is lengthy and actually makes you much worse before you get better.
My life was filled with complete darkness and depression, I could barely get out of bed to go to the bathroom.
I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain.
I would have seizures, pass kidney stones, and go in and out of consciousness all in one day.
This time was truly the darkest days of my life, I was hopeless. My brain was so foggy that I could not think straight, much less walk straight. My short-term memory was shot. I was beginning to wonder if I was literally going crazy. I was desperate and had to quit treatment for a few months, which was devastating given the length of time it was going to take to go into remission to begin with.
It turned out my body could not handle this phase of treatment and I was having severe reactions. I was having a massive healing crisis; the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released into your system, and if the amount of toxins gets too high, it can wreak havoc on your body and even lead to death.
I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist in Homewood: Blissful Heights. I got my body back in balance and began treatment again and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job, as it requires total commitment.
May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills star and former model Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform (most celebrities with Lyme Disease do not go public with their battle). Then it hit me:
instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions like Yolanda, but I do have an internet and a blog and I, too, can reach people.
I started May off by posting educational information for Lyme Awareness on facebook—tired of my self-imposed silence and wanting to break free of my fear. The love and support I received was completely overwhelming. The South is severely lacking in Lyme advocates, so I was emboldened by the initial response of support to try and fill that roll and joined an amazing organization called the Alabama Lyme Disease Association. It started off with a few facebook posts and then grew into my blog.
I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have CLD but cannot afford the treatment.
The most important thing right now is for people to learn about Lyme disease
to know that over 300,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and insurance companies will not touch it since the treatment costs are so significant.
The treatment for CLD is aggressive and lengthy. I am beyond blessed to go to the leading Lyme Literate Medical Doctor, who was formerly one of the top AIDS researchers, so he has a very strong background in Infectious Disease. Treatment makes you significantly more sick before you get better. It is a grueling journey—one that has left me bedridden, unable to think or speak at times, and in a pit of total darkness. Because of how torturous treatment is, along with other factors, such as isolation, the suicide rate in CLD patients is extremely high.
Most do not commit suicide because they are depressed—but because it is the only way to escape the physical pain and mental anguish experienced—the ultimate ‘fight or flight.’
Invisible illnesses are hard to understand, and most people’s natural reaction is to back away from the unknown.
I pray that the people who read this that have their health will gain a better understanding of how to ‘handle’ it when a person in their life becomes sick…
not necessarily with Lyme but with any other disease that you cannot see with the naked eye.
Living with Lyme has taught me so many lessons, and already I am a happier person because of it.
I have found a closeness with God that I didn’t realize was possible and have completely let go of all my fears.
One day during a difficult time in treatment, I was suffering from a rather gloomy outlook and it seemed as if my treatment would go on forever and it would never end. I was in a very child-like state–feeling so sorry for myself and thinking over and over again that I will never beat this–and while in this state I had an uncontrollable yearning to be held by my father like when I was a child and he would tell me “everything will be okay”…and he seemingly always made things better. I always felt safest that way and when you are a child you truly believe with all of your heart that your parents can indeed make everything better.
I remember lying on the bathroom floor in a ball of pain and crying, rocking back and forth, and screaming “Why God? Why!! I cannot do this. I just need someone to hold me and tell me I will be okay.
” I suddenly realized that the yearning I felt was not for my father on earth, but for my Heavenly Father.
At that moment I felt a tremendous weight lifted off my shoulders and a warmth that calmed me down enough to fall asleep. The next morning I woke up and felt something new deep down in my Soul. It was not a belief that I will get better and I will heal, it was a profound and factual knowledge that I WILL conquer this disease, without a doubt.
I have always felt close to God and prayed in the morning, before meals, and at night. But on that day I felt lifted up so high as that I could see everything from God’s perspective. I started to learn how to live with Him by my side at all times and share with Him everything I do and everything I am going through. My yoga and meditation practices even became spiritual, a time to calm my mind and just listen, and to take the time to thank Him for his healing Grace.
The treatment had caused my small frame to balloon up to 145 lbs, and I could barely look at myself in the mirror. But once I started living my life close to God, the image in the mirror changed as I no longer just saw the image of my body reflected back to me.
This diseased body of mine is just something my Soul is living in while I am on Earth. My soul is not sick, just the capsule that carries it.
I am not saying that I was able to get over my pride overnight, but it did make it much easier to handle. By the way, to show you how crazy the treatment can be, I lost all of the weight in a few months by a tweak in treatment and now have lost too much weight (94 lbs was my lowest weight). Random weight gain and weight loss occurs in a lot of Lyme patients, as does severe muscle atrophy.
Before my body put on the brakes and completely quit on me, I was working 50-60 hour work weeks working for my father. He in no way required this of me and even told me to stop working so much, but my overly-compulsive Type A personality would not allow it.
Fast-forward to now: after a lot of hard work and yoga, yoga therapy, ayuverdic therapy, meditation, breathing exercises with a biofeedback machine, etc I have learned to control the beastly Type A overachieving personality and become closer to Type B. This is not something I am doing so that I can get better and get back to work and my old ways, it has been a complete lifestyle change.
I have learned to love myself exactly as I am and to not judge my body on what it is going through. I have a greater appreciation of God’s creation and even see colors more vividly.
I feel so at peace in nature and have a peaceful mind, something that I have never had before. Instead of judging my self-worth based on my accomplishments, I have learned to love myself as
God made me, not because of what I have achieved but because of the person God created me to be.
I have made a major lifestyle change that will remain with me the rest of my life. I am still the same person–a little too competitive and obsessive at times–but God has found a light in the darkness of this disease. I will never be the same as I was before and thus my life will be so much more fulfilling. This curse has become my blessing and will change the course of my life forever.
God bless you all and please join me in praying for all those infected with Lyme…send them love, support, and healing. A patient’s mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. After all, happiness and companionship are far stronger than any painkiller.
Thank you to all of you who have always supported me—my family, my amazing husband and my friends who refused to leave my side. I am blessed to have such a wonderful group of people who have never given up on me.
May 2015: I was hospitalized the previous Fall (2014) and had to move back in with my parents. My outcome was looking bleak–I had toxic hepatitis from treatment and the doctor told my husband that had we waited any longer to come in I could have suffered complete brain damage or even loss of life. I started to wonder if the fight was over and continued to pray to God for miraculous healing. By Christmas of 2014 I was able to function more normally than I can ever remember.
Chronic Lyme patients with co-infections do not suddenly get better–it is a very slow and agonizing progress.
God performed another miracle on Christmas and started giving me my life back.
My specialists were baffled at this sudden and extreme improvement and instead of moving on to remission treatment they chose to forgo any more treatment and told me if I continued my healthy lifestyle and holistic treatments that I could put myself into remission. God went above and beyond again–I had been praying for remission treatment in lieu of the intense regimen I had been on.
But our God has no limitations and he showed me I was not dreaming big enough.
I still do not function normally but most days people who do not know me cannot tell I’m sick–and most days I do not look sick. I’ve gained 15-20 lbs back and no longer have that yellow/gray palor to my skin. I still have flare-ups but I no longer feel tortured. I go back to my specialist in DC within the next month and would appreciate prayers that I am close to or have found remission. It will still take a year at least for my body to heal from the trauma but I will gladly take that on.
I married the love of my life in Alys Beach that September and I started a lifestyle blog with a new friend who is so amazingly supportive of me. Our blog, The Southern Atelier, has brought so much joy into my life. And
Rachel and I are using it as a platform to raise awareness and funds for Lyme Disease in the South.
My current situation (May 2015): I am going back into treatment next week. I am still close to remission but not at the point where I can live something close to a normal life. I spend 75% of my week in bed resting or recovering; however the agony is not nearly severe as it once was. For example, I can go to brunch with a girlfriend one Sunday and on Wednesday I am still in bed recovering. It confuses many, to see me sometimes ‘normal’ and other times very ill.
I am determined to find complete wellness. I am approaching this next phase of treatment with more confidence than any other treatment round before. My husband and I both feel at peace with the treatment and I look forward to enjoying my progress – and I will keep you all up-to-date as I continue to heal.
Update: January 2017: When I look back to all that I have been through I am amazed at who far God has taken me. I am so close to remission and am fighting towards it on a daily basis. I still spend about 70% of my time in bed or on the couch. I rarely leave my house. The last event I attended was Mobile Fashion Week, back in October. It was a stretch to go two nights in a row but I was determined I would not let this disease win.
I am blessed in that I have periods of time where I almost feel normal, aside from debilitating fatigue. I haven’t had a seizure in over a year. In November I had almost 2 complete weeks where I was able to really ‘go and do,’ if you will. I also had several days in a row while in the Caribbean with my family for Christmas where I was active enough to go snorkeling!
Right now my greatest battle is my reproductive system. I went through a series of tests and more tests and my lab results concluded that my body was in the later stages of menopause. Some tests showed that I was post-menopausal. On one test I was actually outside the range of post-menopause…meaning that an 80 year old woman would have tested closer to a menopausal state than I did.
This was truly devastating given that my husband and I are ready to start a family. We have been married over a year but together for seven years.
However, I recently had a successful surgery where they removed several tumors from my uterus called a hysteroscopy. Below is what they were able to do:
- Removal of endometrial and cervical polyps
- Removal of fibroids
- Biopsy of the endometrial lining
- Removal of intrauterine adhesions (scarring)
- Endometrial ablation- destruction of the uterine lining – and DNC
There were also a few fibroids pushing into my uterus that had not broken through the wall yet, so they were unable to remove those. But besides that the fourth (and, God willing, final) surgery was very successful. I am currently on very aggressive hormone treatments to more or less jump-start my ovaries; the hope is that I will be able to start producing eggs again.
Although I am not able to go out of the house very often, life is so much easier. Six years ago I could not get out of bed. Often these days I can not get out of bed. The difference is I no longer feel like I am being tortured from the inside out. I can walk without a walker perfectly fine. I no longer have any type of paralysis. I have not lost consciousness for any length of time in almost two years. I haven’t had any seizures that caused falls…no more ER visits to have my chin stitched up. The difference is staggeringly significant.
I am one of the lucky ones – not many CLD patients improve as much as I have. And I continue to improve, daily. I often take one step forwards and several steps back. It will take me several days to weeks to recover (sometimes months), but then I am able to take twice as many steps forwards as I lost, to continue the analogy.
I am blessed to have clients who understand that I can not be relied upon 100% of the time. When I am hired to model I always hire a back-up model to be safe. I have learned to live a fulfilling life and I no longer feel the deep pain of depression.
Truly, God is good. He has been with me every step of the way. I will try to update this when I get more test results back regarding my hormone levels and ovary function. I also go back to DC in April – my LLMD is very happy with my progress.
I am still working on my pride and not being embarrassed to be sick. It is much easier sometimes for me to allow people to think I am a bit flaky or scatter brained than to know what is going on.
I promise I will go back and edit this last update in a few days. My brain function has been damaged by neuroborealis when the spirochetes broke the blood/brain barrier. There are tests to see how much of what was damaged has been recovered, but my husband and I have decided not to pursue that avenue. I do not want to go through life knowing that only 70% (or insert any number) of the brain damage has recovered – knowing that might further handicap myself. Here is my logic: my parents found out I was dyslexic when I was a very young child. One day in 11th grade I came home and flippantly joked about how ridiculous my math teacher was and how I was slightly offended that she had pulled me aside to discuss dyslexia. It was not until then that my parents told me of my diagnosis. At first I was angry with them for withholding that information, but now I realize that the knowledge that I was in some way handicapped may have kept me from believing in myself as much as I do. I can count on one hand how many times dyslexia has presented itself in the past two years. In my specific case, mind over matter prevailed (I know this is not often the case for many who suffer from dyslexia – mine only presents itself when I am severely fatigued).
To those who have taken the time to read this, thank you. Your support and understanding means the world to me.
I am truly blessed to live such a beautiful life, despite it all. God is good. (If you are reading this right now I have yet to edit the update. Some days my brain function is much higher than others. Check back in soon, I’m sure I will make much more sense when I am able to go through this again. I hope that I have made sense.)
As always, Glory to God in the Highest! I praise him with thanksgiving for the divine healing I have received thus far and I look forward to more that I know deep in my heart will come.
Many often ask how they can contribute. Please visit this site to donate to our local Lyme charity. It is 100% volunteer-run and we have had tremendous success using the little funding we do have to do big things.