Dannika's Story of Healing Lyme Disease

On July 15, 2018, my 8 year old daughter Dannika came down with what we thought was a virus. She had bodyaches, low-grade fevers, she could not eat, had a hard time sleeping and was very light sensitive. She had been sick for roughly a week, and then seemed to get better. Within a few short days, she again started having extreme body pains. She could not move her head, she could not walk, she was sick to her stomach, she had a low grade temp and now was screaming holding her legs, crying back hurt, her fingers hurt, her knuckles hurt. 

Some thing did not seem right at all! I had remembered that she was bitten by a tick roughly 2 to 3 weeks prior. 

I took her to urgent care and told them that she had been bitten by a tick and all of her symptoms. The urgent care Doctor told me I should follow up with her primary care physician. They were unaware of how they should go about treating Lyme and what test they should be doing. They thought that she could wait until Monday to follow up with her primary care physician. I was very frustrated and demanded the Doctor figure out what tests need to be done.  They finally agreed and did the western blot test. On July 18, 2018 I was still waiting for the test results to come back.

My daughter seemed to be getting sicker and sicker. I took her to her primary care physician. She looked at her and said she needs to be seen at Upstate Golisano Hospital immediately. They would know how to treat Lyme and if it wasn’t find out what was causing all of her aliments. My husband and I took our daughter to Golisano Children’s Hospital in Syracuse, NY. They did the Western blot test and ran some other tests as well. She was showing signs of meningitis as well, so if the test came back positive for Lyme, she would need a spinal tap done to rule out Spinal bacterial Lyme Meningitis. We waited for a while and the test results came back that she was positive for Lyme. They then had to do a spinal tap. I remember that day was the scariest day of my life. I prayed to God for hours. I begged for the tests to not show Lyme Meningitis. Bacterial meningitis is extremely risky and can be life threatening. Thank God it came back negative for Lyme but she did still have viral meningitis. Viral Meningitis is still very painful but it’s not life threatening, so we were thankful for that. At that time they said she would be prescribed Doxycycline for 21 days and we were to follow up with her primary care physician. After seeing her primary care physician, she felt that it was necessary for us to follow up with infectious disease. She continued to have terrible joint, back pain, finger pain, low-grade fever‘s, terrible headaches, light sensitivity, extreme fatigue, napping 3 to 4 hours daily, waking us up all hours of the night, constantly complaining of body pain and unable to sleep due to pain. Her pediatrician referred us to Upstate Infectious Disease. We were told it could take up to 6 months to get an appointment. We were also told that sometimes it takes a while for the symptoms to go away. 

She started school in September and she missed a total of 68 days that school year before she was finally put on home bound instruction, so we could work around her symptoms. She had headaches, low grade fever’s, fatigue. She would sleep for 2 to 3 days straight, body pains, stomach pains, joint pain. We continued to just treat her symptoms and waited patiently for infectious disease. In October, we decided to take her back to Upstate, because she was still symptomatic and extremely ill. Upstate Golisano Children’s Hospital did bloodwork again. They were always persistent that she was treated for Lyme and whatever it was causing this was not Lyme related. But Lyme was the only test results that came back positive yet again. We were told they were not going to do anything more at that time, because we would be following up with infectious disease and it was best to let them handle it.

We followed up with infectious disease Dr.  at Upstate Children’s Hospital. When we finally got to see the Dr. I was so relieved. I felt as if she would know what to do and how to make my daughter healthy again. The Dr. asked me why it was that I was following up with her. I explained that my daughter had been bitten by a tick and that she was positive for Lyme. She explained to me, that she was treated for the Lyme with Doxycycline. She told me that she did not think that what was going on with my daughter was necessarily due to the Lyme disease. She also made it clear that the CDC recommends 21 days of Doxy. And you are healed! There are no long term affects of Lyme. She also made it clear to not come back unless she again is bitten by a tick. 

At this time my daughters lymph nodes were extremely swollen. They looked like small grapes I. The side of her neck. I asked her if it was possible that there was coinfection’s. I had done a ton of research and many people spoke of co infections from ticks. She told me that ticks in our area do not carry coinfection’s. Come to find out later in life, NY state doesn’t test for coinfections. I asked her to explain to me, why my daughter was still suffering so terribly. I explained to her until the day she was diagnosed with Lyme disease she was a completely typical child. She went to school, she had friends over to play, she  attended parties. I explained to her now my daughter can’t make it through a day of school. She can’t stay awake for more than a few hours. She was extremely light-sensitive. She had pains all over her body. She told me that she did not know why she would have even been referred to her in the first place and told me that perhaps I need to see my primary care physician and ask her to refer me to someone else. She  also told me do not come back there unless I find a tick on my daughter again.

When we left my heart was broken. I felt so lost. So confused. So beaten down and frustrated. I went to infectious disease thinking these were the people would know how to help my daughter. They would know how to treat her and how to get her back to her old self. I was so hopeful when I went there and left feeling completely lost and helpless! 

My daughter continued to have reoccurring symptoms. She missed her birthday party that year, she was sick through holidays and continued to miss school. On April 13th when my daughter could not stand without throwing up, her body hurt so bad, I could not rub her back to console her. We could not touch her hair. She would scream in pain. She could not sleep, she could not walk, and everything on her body hurt terribly. I finally had enough and took her back to Upstate Children’s Hospital. I told them yet again all of her symptoms. At that time the doctor told us they are all getting together and they will do every test possible to find out what was wrong with my daughter. My husband and I felt like even though we may not have a full answer we at least will have a direction to go in and maybe it wasn’t Lyme after all. The doctors told us they were sure was not Lyme! 

They told us that we had given it long enough for the symptoms to subside and although she had Lyme in her past, they suspected an auto immune disease. After waiting hours for the results to come back the doctors came in and told us that all of her autoimmune markers, came back negative. The only thing that they could find was she was positive IGG and IGM for Lyme. Big surprise! Again we felt some relief for having an answer. They gave us another round of Doxcycline. At that time I remember feeling like this was the answer. Although I did believe the Lyme was never truly gone!  I also felt like maybe this 21 day antibiotic will work and my daughter would be whole again.

We completed the antibiotic just as we were instructed. We were hopeful that she would be feeling better. Unfortunately though she continued to have all of the same symptoms. We followed up with her pediatrician. She referred us to a Rheumatologist. In April I found a natural path doctor and we were hopeful the natural path would have suggestions.  We purchased a bunch of vitamins and made diet changes. After meeting with the natural path she suggested my daughter have testing done for tickborne coinfection’s. She was sure she had them. She was very informative but she could not do the bloodwork herself. 

We continued to follow up with Rheumatology at Upstate Children’s Hospital. The doctor did  a very thorough long physical exam and reviewed all of her medical history. He went over all of her bloodwork from birth to current. He told us that he did not feel there was any autoimmune disease of any kind. At this time I felt so frustrated. I was watching my daughter lose weight and becoming extremely frail. She lost her spunk, her quirky little personality. My frustration and doubts grew bigger.

She started having terrible abdominal pains. Everyday all day adding to her other symptoms. In May we followed up with our pediatrician again. After telling her everything we had been through and the frustrations we are facing she suggested that we find a Lyme literate medical doctor. At this time my daughter was having terrible stomach pains in addition to her joint pain, fevers, headaches, fatigue. On May 15, we went back to Upstate Children’s Hospital. My daughter was having terrible pains on her lower left quadrant of her stomach. This time pain was different being more in her left lower quadrant. We took her back to the hospital and she had elevated white blood cell count, and her appendix was inflamed. We asked the attending physician to check her Lyme Western blot again. The attending physician said she would look into it and let us know if they could do that. When I left my daughters room for a brief minute, I saw the attending physician reading a pamphlet on how to treat Lyme. I completely lost my mind!!!!! You trust doctors with your child’s life and with your own! After seeing this doctor reading a paper pamphlet and how to treat my child, I knew I had no choice but to reach out and find a Lyme Literate Medical Dr. We ended up being admitted into the hospital that day and her appendix was removed. We were again referred to another specialist, a Gastroenterologist this time. They told us that they did not think the stomach pains prior to the appendicitis, were due to the appendix inflammation. We were told that appendicitis happens quickly and does not take months to become infected. I again felt like this too must be related to Lyme. Again we were placed on another waiting list. 

In the meantime I grew more frustrated. I was watching my daughter waste away. Her weekends were spent laying in bed or on the couch. She had missed countless days of school that year. We spoke to with the principal and it was decided to do her school at home so she should not have to worry about trying to make it through a day.
At this time I started searching for help! I needed someone to help me save my child’s life! I felt like she was becoming sicker and sicker. It was time! Time for us to do our own research and to find answers. I joined some Facebook parenting forums for Lyme disease. I was doing what was suggested by my doctor and looking for a Lyme Literate medical Dr. I asked many parents if they had any luck. So many parents had referred me to Dr J. So I reached out to him and asked him if he would see my daughter. He was all the way in Connecticut. We would have to pay out of our own pockets to see him. I researched him and knew he was the man that would save her! I felt drawn to him. I felt like someone was telling me to go! If he could save her, it would be worth any amount of money. Our daughters life felt like it was on the line. In June we made the trip to see Dr J. At this time my daughter couldn’t walk across a parking lot. She slept every day, almost all day. She didn’t want to leave the house for anything. The doctor was very knowledgeable regarding Lyme and other tickborne illnesses. He did a three hour long examination of my daughters physical and mental well being. He was amazing!!!! He was 91 years old and so, so, so smart. Hysterical too. He took 19 vials of blood from her little arm. She almost fainted. The poor baby was so sick before going to him and then had to go through that! It was horrific! It took about a month for all the bloodwork come back. It showed Dannika was still positive for IgG and IGM Lyme. She also had 4 other tick borne co infections. Bartonella Hensleigh, Bartonella Quintana, Erlichiosis, and PANDAS, which is a different form of Streptococcus. He started her on four antibiotics and for the remainder of the months we continued to just treat her symptoms.

During the summer months my daughter did seem to feel somewhat better. Her sickness seemed to lesson in frequency. She did in fact continue to have all the symptoms, just not nearly as excruciating. We felt at that time we had made the right decision.

In September, my daughters stomach pains continued. On September 9 we took her back to upstate hospital because she was having terrible stomach pains yet again! They suggested a full stool clean out. Her stomach completely stopped working all together. The hospital had placed a nasal gastric tube in her poor little nose. She needed continuous medication to allow her to go to the bathroom. She was admitted to a couple of days and we were sent home. After 14 days again, we were being admitted for a Nasal gastric tube for a full clean out. We followed up with Upstate GI and we were out on a regimen of laxatives to help her go to the bathroom. On October 6, we had a follow up appointment with the Lyme Literate medical Dr. he repeated her bloodwork and exam. Her symptoms at that time had really decreased. She barely had any joint pains. No more low grade fevers. She was still fatigued but she was clearly much better. The repeated bloodwork came back. She was negative for Bartonella Hensleigh and Bartonella quintana. The Erlichiosis, Lyme and PANDAS we’re still positive.

From mid October 2018 until now, I can honestly say my daughter is doing much better. She has not missed one day of school. She is still on antibiotics and will be until we have negative bloodwork. She is doing so good though! She finally sleeps. She rarely takes any medications for headaches or body pains. She is back doing after school activities. She has friends over. She has energy. She climbed a mountain!!! She climbed a freakin mountain!!! I could scream that so loud. That right there is so heart warming. She is almost whole and healthy again! We will see Dr. J soon. I dream of the day he says she’s healed. She’s healthy and whole. I pray this will be her last 19 vials of blood! We will get the bloodwork to confirm, she is negative for Lyme and coinfections! I feel it in my heart. I pray for it every day. There is no doubt in my that if we did not follow up with  Dr. J our Lyme literate medical doctor, my daughter would have continued to suffer. She would have become so much more emaciated. She would have continued to have those nasty little spirochetes attacking her little body. She would have continued seeing specialist, after specialist, after specialist, looking for what else could have been wrong. Without the knowledge of Dr J and his many years of research. Without him treating thousands of children, who are suffered with Lyme, my daughters life and theirs would have been at risk. I take each day we have watching her eat again, run again, play again and I am so over whelmed with gratefulness. She fought hard! We all did. Our hearts broke so many times. Today though she is good and I will continue to believe she is healthy and whole again! She is a Lyme Warrior and we are so proud of her strength. I try my hardest to educate! To make everyone aware. I always share her story. I want her suffering to have a meaning.