Lyme Disease and Babesia
The whole story of my episode of Monsters Inside Me
After my episode of Monsters Inside Me aired about my struggle with Lyme disease and Babesia, my inbox has exploded with people wanting to know the whole story. So here is my entire story, treatment plan, and recovery process :)
I first want to give a huge thank you to Animal Planet for taking the time to share my story. Also a thanks to my amazing parents who helped me through my fight and my friends that stuck by my side through it all. I want to give a special thanks to my Lyme doctor, Dr. J. Without his help and support I wouldn’t be alive today. Also, thank you to all those who have reached out to me to support or questions. After my story aired i've had so many people reach out to me wanting to know more. The episode was not even a half an hour long so there no way to squeeze 18 years of my story into such a short segment.
I also want to thank the other people who had published my story. Dr. J had published my story online and so has also Lisa Hilton, a Lyme disease activist. The links are provided below.
All of my symptoms
Every Lyme patients symptoms are different, but these were all of mine
- CHRONIC PAIN (my neck, back, knees, shoulders, hips, hands, ankles, wrists)
- Twitching (mostly in my face and hands and knees)
- Sever headaches
- Hypersensitivity (Tingling, numbness, burning or stabbing sensations, shooting pains, skin)
- Extreme fatigue
- Night sweats
- Breathlessness, “air hunger”
- Hair loss
- Speech impairment (stuttering)
- Sever memory impairment
- Hearing, constantly ringing in my ears
- Word search, name blocking
- Movement of pain or swelling to different joints
- Joint cracking and swelling
- Tremors and unexplained shaking
- Light headedness when standing up from sitting down
- Stiff neck
- Jaw pain
- Chest pain and rib soreness
- Exaggurated response to alcohol and sweets
Since I was 5 years old I was very involved with sports. I loved soccer, dancing, and cheer leading. I was also a part of the Girl Scouts and very active outdoors. I was constantly camping and spending a lot of time outdoors, especially in the woods. Every night when I got home from playing outside, my mother would check my sister and I for ticks because they were extremely common in the area I live in. I had them often, it was nothing out of the ordinary to find one. We never thought anything of it. When I was 5, my mother did notice that I had a deer tick on me with the bulls eye rash around it. She took me to the doctors, I was put on a 2 weeks course of antibiotics and told I was "cured".
We took the doctors word of being "cured" because I never got sick. Not until about 5 years later. Around age 10 was when the extreme fatigue and lack of memorization started to occur. Since I was so active with sports, my parents were concerned because it wasn't normal for me. I was taken to my Primary Care doctor and was told the extreme fatigue was "part of growing up" and "hormones" and the lack of memorization was ADHD. It was something that I could easily manage
At age 12 my fatigue worsened, my memory started deteriorating and my hair began to fall out. I returned back to my Primary Care doctor and my doctor blame it on hair products, which made absolutely no sense. We were sent away with no answers again.
Once I turned 14, another symptom was added case. I started to get sever neck pain. It was more stiff than painful and impossible to move certain directions. It was a terrifying feeling especially because this was when I was learning to drive. My fatigue was so bad I began to get short of breath. Breathing started becoming difficult so I was forced to give up the one sport I loved, soccer which was the hardest choice I had ever made. My parents and I made another trip to our Primary Care doctor to tell him my newest symptom. This time he finally agreed to run some blood work. He also told me I had asthma and gave me an inhaler.
A few days later my mother got a call from our primary care doctor asking us to come in immediately because something came up in my blood work. We saw the doctor the next day and he gave me my (first) diagnosis. My iron levels were dramatically high, stating that I had Hemochromatosis. Hemochromatosis is a heredity blood iron overload disease. The improper processing of the iron causes the iron to accumulate in a number of body tissues, eventually causing organ dysfunction that eventually leads to liver disease, including an enlarged liver, cirrhosis, cancer, liver failure, and death. It was terrifying news considering I was only 14 years old. The doctor referred me to an Oncologist/Hemotologist to begin treatment right away. Treatment that I was going to be on for the rest of my life.
My entire family was tested and both of my parents turned out to be carriers of the disease, but only my dad had the full disease. My dad and I began treatment right away which was getting a Phlebotomy (or blood letting) performed. I had to get a huge amount of blood taken out once a week to reduce my iron and ferritin levels. My Hemotologist assured me that my symptoms would soon fade away once my body had normal iron and ferritin levels. Once again I took the doctors word. I went to treatment every week and maintained a great low iron diet cutting out meat, cereal and all other high iron foods. I was very blessed to have found out at such an early age, especially because my father had it at almost a fatal stage.
Years go by and I am feeling no progress regarding my symptoms. In fact, they began to worsen over the years. I'm upset with my progress so I switched Hematologists. This Hematologist had a very different view on things. He said there is no way I should be experiencing any symptoms at all, even before my treatment. Symptoms do not become visible until around the age of 50 when there becomes damage to the organs and joints. This didn't make any sense to him so he referred me to back to my Primary Care doctor for some more blood testing because things didn't add up. I went back to my primary care doctor and my test results came back fine. We were sent away again with no answers.
My grades started dramatically dropping and my well being began to fluctuate. I started to experience sever headaches. The headaches were so sever and intense it was hard to concentrate or be around brightly lighted rooms. My family and I returned to the doctor and the blood results, MRI and x rays remained normal. I struggled and tried my best to get through school . I was in danger of completely failing an entire grade but pulled myself together enough to barley graduate.
That summer I was still searching for an answer. I saw my doctor again and he told me I had Chronic Fatigue Syndrome. This didn't explain my neck pain so I was referred to physical therapy. I went to physical therapy for 3 months and saw not even the slightest bit of improvement.
After I graduated I forced myself into going to a community college. I pretty much resigned myself to a life in pain and wanted to go forward with my life. I completed one year of college, but then things changed. I woke up one morning in complete pain, all over my body. My neck pain had spread to my back and shoulders. I was in such pain I couldn't even get out of bed. I was in such pain and agony I had to call my mother in tears to make another doctor's appointment for me, this time with a new doctor. I changed primary care doctors because my last one wasn't doing anything for me. She set me up an appointment with a new primary doctor and I went in a few days later to see her.
My mom drove me to the doctor because I was in no condition to drive myself. The new doctor was pleasant and friendly but a bit young. We sat down together and I told her all of my symptoms. She was confident of what she suspected, so I was hopeful. She suspected I had Lyme Disease so ran some blood work and prescribed me some pain medication. All we could do was wait for the blood work.
The doctor called me and told me that my test results came up positive for Lyme Disease and she wanted to start me on antibiotic treatment as soon as possible. She assured me that this disease is very curable and my symptoms will be gone within a few weeks. Seemed too good to be true. I went and saw her again and she prescribed me to 3 weeks of Doxycycline. A few days into taking the antibiotics, I started having sever reactions. My joint pain got even worse, I was vomiting so bad it was just like I had the flu. She claim it to be an allergic reaction to the drug so told me to stop taking it immediately and prescribed me to Amoxicilin for 2 weeks. She told me told me to return in 2 weeks to follow up and see if I’m any better.
Those 2 weeks were a living nightmare. Not only did I not feel any better, but I felt worse. I stayed in bed for 2 weeks crying in pain not getting any better. I finally go back to meet with my doctor and explain to her my situation has worsened which confused her. She ran more blood tests and x rays and everything seemed to be normal.
A few weeks later, my joint pain began to spread more. I started having sever pain in my hands. It was so bad to the point it was difficult to write, open jars, and even drive. My neck and back began to worsen and it began to spread to my hips, knees, ankles and feet. My entire body felt like was completely shutting down. Some days it was hard to even walk. I began to get extremely nauseous and vomit almost daily. The nausea became so sever I had to carry a trash can in my car in case I needed to suddenly vomit. At this point I had no other choice than to drop my classes and stop going to school.
I returned to the doctor for more blood work, everything came back normal. She then referred me to a Rhumatory arthritis doctor. My father took me to the doctor but it was the same as all of the other doctors. She diagnoses me with Arthritis and prescribed me to several arthritis medication. I saw this doctor for about 6 months with no improvement so she referred me to a psychiatrist. I was outraged and furious but she insisted that its "all in my head".
While waiting for my next appointment, more symptoms started to occur. I began to wake up in the middle of the night almost every night drenched in sweat. It got so bad to the point I would have to get up and change clothes or take a shower. I felt like I always had the flu, shaking cold but waking up covered in my own sweat. My memory began to degenerate so bad I would repeat tasks because I couldn't remember that I already did it. I felt like I was living in the body of a 90 year old women but I was only 19. I started to get "brain fog" and it was hard to even think at times. I felt like I was losing my own mind.
Then came the neurological issues. I started getting a weird "pins and needle" feeling on my skin constantly, mostly on my arms. It almost felt like It was raining on me or someone was splashing cold water on my skin. Then I started getting sever twitching. The twitching was always on and off and started to become very noticeable. I would mainly get twitching in my face, almost to the point where it looked like I had turrets. Life started to become unbearable and I literally just felt my own body slowly dying.
I meet with my primary care doctor again a week later. She suspects its my thyroid so she ran more blood work and another x ray and MRI since I was having joint pain in more places throughout my body. I will never forget the day I got my x rays done. The x ray technician was a very friendly girl, seemed pretty young. She was very chatty with me and asked why I was getting x rays done and I told her that doctors are clueless as to why I'm in pain. She was very comforting and told me that she knows how hard that can be, she went through the same experience a few years ago of joint pain, headaches, and hair loss. I asked her what her diagnosis turned out to be and she said Lyme disease
............What? I explained to her that I had Lyme disease twice, but was cured from it each time. She gave me the most confused look and just said, "cured?!" She asked how long I was on treatment for and looked at me like I was a complete moron. She told me how she was on antibiotics for 2 years until she began to even see an improvement of her symptoms, 3 weeks is for an acute infection, not a long one. I was furious. I didn't understand why my doctor didn't treat me long enough and told me that I was "cured". I thanked the girl and waited for my results.
My doctor calls me and tells me something came up in my x ray. She said that I had sever degeneration in my cervical spine which was odd because it wasn’t like that a month ago. She explained to me that this doesn’t happen in young patients, typically only in very elderly people. This was her red flag. She told me that she suspects Chronic Late stage Lyme Disease, but she wasn’t able to treat me. She recommended I find a Lyme Literate Doctor, not and Infectious Disease doctor. She seemed to emphasize on not going to an infectious disease doctor.
I went in search for a Lyme doctor but had to wait several weeks to finally meet with him. Along with my sever joint pain, breathing problems, hair loss, fatigue, twitching, burning sensations, nausea, nightsweats, memory loss, brain fog, my final symptom came a week before my appointment. I began to get extremely dizzy constantly, especially when I stood up. Sometimes I would stand up and almost faint because I’m so dizzy. This was my breaking point, if this wasn’t Lyme disease then I was at ends trying to figure it out. It wasn’t worth it to live a life in pain like this anymore. I didn’t feel like I could live another week without not waking up.
The day I met Dr J. was the most life changing day of my life. He was the first doctor that didn't push me aside and think I'm crazy and refer me to another doctor. I was his last appointment, he took an hour meeting with me. We went over everything and he was certain that I had a Chronic late stage case of Lyme disease. He also suspected Babesiosis because of my flu symptoms and night sweating. He had me come back the very next morning for lab work.
My Lyme test came back negative, which was heartbreaking to hear. Dr J was not satisfied, so he ordered another lab test. But this one was different, it was being shipped off to a special Lyme Disease lab in New York which would give us much more accurate results. All we could do was wait...
Finally the lab results were in. Positive result! The Western Blot test came back with FIVE bands that were infected both late stage and currently active. Very positive result. Babesiosis lab results came up positive as well. Babesiosis is a parasitic infection similar to malaria. The parasite infects and destroys the red blood cells which was causing the night sweats, flu like symptoms, and difficulty breathing.
Treatment was the most difficult process through this entire experience. Dr. J told me that the treatment it going to be the roughest time of my life because my symptoms will intensify. With Lyme disease, you have to "get worse before getting better". Every day was agony and bed rest, I felt like life was a torture.
A year goes by and I see no improvement. About a year and a half later I finally began to notice improvement in my symptoms. My night sweats were not as often, I was no longer having trouble breathing, my twitching was not as sever, and my joint pain began to improve. Around 18 months later I began to see a dramatic improvement. Two years later, every symptoms is now gone besides mild joint. The only joint pain that still remains in my body is my back and my neck. The joint pain in my hands, feet, hips, shoulders, and knees are no longer a problem. At times I do have flare ups, but not often
Medications I used that I had success with
These are some of the medications i used and had success with. I alternated between them so I was not taking all of these medications at once.
- Zofran (for nausea)
- Florastor (probiotic)
The herbs I used
Everybody is different, but these are the herbs I experimented with that showed a huge improvement in my recovery
- Glucosamine/Chondroitin/MSM (great for joint pain)
- Wobenzym (great for joint pain)
- Cats Claw
- Magnesium Citrate (helped with the twitching and pins and needle feeling)
- Black Walnut
- Alpha Lipoic (helps with joint pain)
How I adjusted my life to living with Lyme disease
I had to adjust my lifestyle dramatically when I found out I have Lyme disease, Babesia, and Hemochromatosis. Here are some things I did along with just taking my medication
- Detoxing. I did several natural detoxing methods along with my treatment. The one I used the most was epsulm salt baths.
- Gluten Free. I cut out several foods that were high in gluten. I also had to stop drinking beer because it was full of gluten and mad my symptoms intensify
- EXERCISE! I know how painful life can be with Lyme, trust me. I was at a point where I was unable to walk. But exercising even the least bit does help. Not weightlifting, but a bit of cardio does help
- Kept my immune system high. Lyme disease tanks your immune system, so I tried to boost mine in any way that I could. I drank a ton of orange juice and took care of myself and avoided sick people. When I would get sick, my immune system would decrease and my symptoms would intensify
- Get blood work done regularly. Antibiotics can do harm, so I made sure I periodically had my blood levels checked to make sure they were not effecting my liver or heart
- Counseling. Counseling helps anyone. I highly recommend it to everyone
- Be prepared for a symptom to flare up at any time. This was a major issue for me and my nausea. While driving or out in public, my nausea would kick in at any time and I would vomit. I carried nausea medicine on me everywhere and I even kept a bag in my car in case I was driving and needed to puke. Little stuff like that helps
- Wear sun screen! It sounds silly, but it's very important. Antibiotics (especially Doxy) make your skin super sensitive to the sun. I had sever sun poisoning on my hands just from driving and I still have scars from it to this day.
Where I'm at now
Since starting treatment about 2 years ago, I am 90% better. I no longer have any of the symptoms that I originally had besides joint pain. I still struggle with managing the pain with my neck and back but no longer have problems with my knees, hands, and shoulders. I occasionally get night sweats but not to the extent that I used to.
I am fully enrolled back in school at a 4 year institution. I have a house in Salisbury, Maryland with two other girls. I am currently in the process of applying to Graduate schools to study Neuropsychology. I have a job at a Health Department in the Core Service and Local Management Agency. I am also doing research with the Neuropsychology doctor at Salisbury University. I am extremely involved with my school and community. I am a member of Alpha Phi Omega, a service fraternity on campus. I also take part in a community service club called Girls On Top of the World. Last semester I was involved with dance but that was pushing myself a little too far so I only did it for a semester.
I still see my LLMD once a month and I am still on treatment. I will forever be on treatment for Hemochromatosis which I do about once a month.
I am very proud of the progress that I have made and I've worked so hard to get there. I am so thankful for everything I have now and view life in a completely different perspective. Thank you Animal Planet for bringing awareness to this awful disease and taking the time to film my story!
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