TOUCHED BY LYME: A teenager seeks answers to a lifetime of pain
The following guest blog is written by Kristina Morrison:
Dear American Medical Association, CDC, and all the doctors who have ever treated me,
You failed me, you all failed me. If I was the only one, that should still matter to you. But there are more than 300,000 cases each year—which doesn’t even count the hundreds of thousands of unreported cases like mine.
At the age of 3, while living in Virginia, I suddenly began screaming out in blood-curdling, ear-deafening, excruciating pain. I would point to my feet, the top of my feet and ask my mom to rub as hard as she could. I dreamed of hammers hitting my foot to help my pain. Now, at just 3 years old, should this be what I dreamed of? No, never.
My mom would take me to the hospital or the doctor on days or nights when she felt helpless as her toddler, her baby daughter screamed out in agony. I was tested, and tested, and the more I was tested, the less my doctors would believe in my pain. I was tested for bone cancer, had a spinal tap, countless blood panels. All came back close to normal. So, I would go to the next doctor.
By the age of 11, I had screamed and cried my lungs out. My pain had slowly radiated up my legs to my knees. I felt pain in the bones, in the muscles, in the nerves. That was after a multitude of doctors and specialists had all diagnosed me with nothing. How could it be nothing, I would cry to my parents. HOW?
By the time I was a teenager, the pain had gone into my hips and my shoulders, my back, my neck, my arms, my wrists, in my hands and all the way down to my fingertips. It progressed in duration and intensity, but since no one believed me, I was forced to live in normalcy when my body was screaming that I had anything but that.
At one point, my family doctor looked straight into my 16-year-old eyes and said that I was making up the pain and needed psychiatric help. I left that office sobbing, holding my mom’s hand as she reassured me that I wasn’t “crazy” as the doctor had so kindly put it. She assured me we would find the answer to my pain.
I am now 18. Here are the symptoms I’ve lived with for most of my life: Bone pain, muscle pain, muscle weakness, fatigue, night sweats, tremors, twitching, neck pain, back pain, headaches, forgetfulness, brain fog, extreme menstrual pain, insomnia, hot flashes, jaw pain, vision going black, dizziness, swollen glands, sore throat, excessive hair fall out, trouble breathing, “air hunger,” digestive issues, nausea, blurry vision, anxiety, chest pain, bladder pain, tingling and extreme numbness in extremities, burning/hot skin, freezing hands and feet, difficulty waking up, and an overwhelming need to lie down.
Did I mention that I went to school the entire time? I finished high school with a 4.0 with high honors, was vice president of my school, was in yearbook, played in hand bells, played volleyball, was a resident assistant in the girls’ dorm at my boarding school. Never complaining, but crying into my pillow, telling myself the pain would go away if I could just get through it to the other side.
The AMA, CDC, and all my doctors: you failed me. Every time you said there was nothing more you could do for me. Every time you told me I was faking it. Every time you looked me in the eyes and said “you’re fine.”
Now let me tell you another side of this story. Ever since I was a little girl I dreamed of becoming a doctor. While other girls thought about boys, I thought about healing others. When they asked what I wanted to be when I grew up when I was just a child, I would say to work with UNICEF or Doctors Without Borders in Africa.
I bought anatomy textbooks at thrift stores, had my own stethoscope, and even a pair of gloves just like the real professionals. By age 12, I decided I would go into cardio thoracic surgery.
I dreamt about repairing a human heart, healing the sick, and giving hope to those in need of love, guidance and medical care. I spent my spare time reading about medicine, or discussing surgeries with anyone who would listen, and the one foolproof way to get me to relax was watching a surgery on YouTube.
I still dream about becoming a doctor, but since I can’t hold anything without having tremors, I could never operate. I still dream about becoming a doctor, but I can’t stand for an extended period of time without feeling like I ran a marathon. I still dream about becoming a doctor, but more than that I dream about the way it would feel to be healthy.
Recently, while lying in bed feeling exhausted after a college class, I came across a video of Yolanda Hadid. She was speaking about her struggle to find answers to hers, her daughter Bella Hadid and her son Anwar Hadid’s sickness. When I heard her say, “the doctors would tell me I was crazy, that it was all in my head,” I felt an immediate connection. Her symptoms and explanation of her ailment fit almost all of my symptoms. I texted my mom, asking her if she had ever heard of Lyme disease.
That was a turning point. After 16 years of being told I had no merit to my pain and no explanation of why I felt ill, I have finally been officially diagnosed with Lyme disease and have started treatment. I look forward to my life being different.
Furthermore, I can’t wait for the day I recite the Hippocratic oath. I will not take it lightly as my physicians have. Just because a doctor does not know what’s causing it, does not mean that pain is not real. It only means that you must work harder to find answers to the unknown, for your patients, for the plaque that sits on your wall addressing you as Doctor, and for the human being who sits in front of you looking to you for help, scared, hurt, worried, and in desperate need.
Sincerely, A Girl with Lyme Disease
Kristina Morrison is a freshman in college, taking pre-med classes. She lives in Arizona.
Wow! Thank you for sharing this post Kristina! We are using Stephen Buhner’s herbs and finding a lot of relief. Although we only have Babesia, perhaps you could get some relief with this route too. Your story is so many others, so thank you thank you thank you for expressing it!!!
We are also finding relief with Vega sports energy drink. Many of the ingredients like Stevia, Devils claw and etc. are very helpful as well. I have 3 friends with Lyme who are now drinking it and finding a boost of energy that they need.
Prayers for you healing and I am so sorry you are going through this. Perhaps you could be a doctor to find a cure for Lyme who takes insurance. Many of the Doctors on the Ilads website don’t take insurance, so many are left to figure out things themselves. This is what we have done, of course with the guidance of God through the many, many prayers.
Good luck Kristina! You are here for a reason and I know you will help the world.
Kristina, KUDOS for a heart-felt true story..YOUR story of everything you went thru from a young girl to the woman you are today.
So glad you had a supportive mother the entire time.
Best wishes on getting your MD degree and helping others like ourselves. May God bless you to be what you always wanted to be …. a MD helping those in need!
Betty Gordon, Iowa,
48 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs.
Kristina- MAny thanks for sharing your lifelong strugle with Lyme disease. I live in England and was diagnosed 3 years after I was bitten by a tick. No doctor or specialist was able to help me. They knew nothing about Lyme. I had no treatment whatsover in spite of seeing many many doctors and specialists. They could all tell me I had Lyme disease but not one had a cure or even treatment. My pains and aches and mobbility are getting much much worse and some days I can hardly walk. WHAT I NEED IS SOME ONE TO TELL ME THE TREATMENT. So what happened to you/ What treatment did you get? I have had five years with nothing being done. HElp!
David Minett (Hastings, England)
David: Just a note. Kristina has started treatment recently. Perhaps she can check back in later with what has helped or hasn’t helped. In the meantime, I recommend you contact the following advocacy groups in the UK, for resources in your area:
https://lymediseaseuk.com/
http://www.lymediseaseaction.org.uk/
–DKL
David, I’m new at this but I’m told the key is to get as healthy as possible. To eat only natural foods. No sugar, dairy or glutin. Drinking Lemon water to detox with Stevia is said to be great. Sweat to detox. Sleep is so important. I joined the Lyme Facebook group that has tons of great info. They say that people with Lyme disease have a harder time detoxing. Detoxing is very important. Juicing with foods to bring brain swelling and body swelling down is said to be important. There are certain foods that people can eat to kill off the Lyme disease. This is all stuff I was told. I LOVE the book How Can I Get Better. It just came out and it’s fantastic. But the key seems to be killing off enough of the bad bacteria. Detox and to get the body strong again and healthy enough to fight off the rest of the bad bacteria on its own. But everyone is different in this. YouTube has info that helped me. I love Dr. Klinghardt on YouTube. I hope you can get better!
David, Stephen Buhner’s book, “Healing Lyme” is very informative and inexpensive. I would recommend buying that book. Also, while my daughter is on long-term antibiotics, she also takes herbal tinctures, which really help. One of them is called “Borrelogen with Virogen,” which I buy on Amazon. The others are called Quintessance and BLT (but you may need a doctor to order those for you. Either way, if you look them up online you can see what ingredients they have or if you can actually try them out it might be worth it. Just go very slowly bc some people are sensitive and may have a herxeimer reaction. Best wishes!
Dear Kristina, I too have struggled with Lyme and the coinfections. I am 83 and don’t do well on antibiotics, which in my opinion only mask symptoms. Not until I was treated with Scalar Energy did it eradicate the pathogens. After one month my body is starting to heal (not easy at 83). Check it out at http://www.selfhealgo.com.
Kristuna; Thank you for telling your story of your experiences on the road of Lyme survival. I, too, become angry over the denials of the persons in the medical profession. I have been studying about the world of Lyme and its trials for well over 2-1/2 years and I am stunned be the lack of openness regarding something as outstanding as Lyme. I approached this with an open mind and have been repeatedly in awe at the lack of a scientific openness by those in contact with an unknown. I am a retired college professor and am doing this study in the hopes of steering multiples of others toward understanding avoidance and relief. I have questioned my medics about Lyme Literacy and they pass. an fact welcome my input. In talking to persons and groups i notice a display of d denial and avoidance regarding the problems. I wish you the best in your recovery and goals. I would like to hear from you further as you progress. You are a strong person …Hang in! I am open and interested.. Thank you. k67piu@iinstanet.com.
Oh WOW. My girlfriend has had lyme disease for four years, three of which were just neglected as they knew not of it and she has suffered through all that you mention above…..!! Jesus..!!!!
Bless you Kristina for your strength and endurance. I have a daughter with Neuro Lyme, bartonella, and Babesia. She is 14 and was told from age 8 that it was nothing and all in her head. If they had treated her at age 8, all the seizures, hallucinations, paralysis, etc never would of happened. I only wish you the best and so happy to hear you are getting treatment.
What a special story told by an even special “strong” girl. I hope you can geget better, so yo can become THE doctor you wantend to be all your life! ????
Fantastic and I wish for a doctor as wonderful as I know you will be. You definitely aren’t alone. 12 years of doctors thinking that I just needed to get out and push myself and get my old, fun life back. I went from obsessively running 6 miles every single day to in bed, in a ball, too tired to even watch TV after a bullseye rash and then vaccines that set everything in motion. My doctor said Lyme disease was not real and to not worry about the rash after I asked him for doxy. He then saw me get sicker and sicker and scared. He then sent me to a doctor who claimed to be a Lyme knowledgeable doctor. After having this 12 yrs, he put me on three weeks of Doxy. I was so sick the first few days, which he couldn’t explain. He also didn’t believe in probiotics and never brought up health once. That doxy pushed the bad bacteria further into my brain and after the 3 weeks of feeling great again, due to the lyme hiding and good bacteria that was fighting it being killed off, I got so much more sick and now my brain’s swollen and way more symptoms.
I used to look up to all doctors, now I don’t trust most doctors. Especially ones at popular hospitals that follow CDC guidelines. I love my 2 Lyme doctors now. I have hope again. I had the best life before getting sick. For anyone thinking we’re faking this and who believe Lyme isn’t real, I dare them to put some Lyme ticks on them. I hope one day they have the same pain, same fatigue and lose their good life and hope like they caused me to do by not believing me and by them claiming Lyme is no big deal. Maybe then the CDC will be forced to tell people the truth.
Can’t find a way to Share via email, which I would like to do!
You can email somebody this link: https://www.lymedisease.org/touched-lyme-teen-pain/
Kristina,
It is only through people like you that we move forward at all with Tick Borne Illness. Infected people, tired of the hypocrisy, and those who love and believe them make the difference. Sounds like you are a pusher and a shaker. That’s good – you will need that drive. Please take care of yourself because you are needed. And the scalpel isn’t your biggest tool – it’s your brain. We need physicians to start thinking and then act on that thinking – doing what is right – not what is convenient and acceptable.
Chin up.
What a sad however inspiring story of a young girl determined to full fill her dreams. I also. Was misdiagnosed twice. However I was fortunate to be diagnosed by two of my friends with degrees &I experience withl limes. May God bless you Kristina Morrison & God’s blessing on your career in medicine.
I feel like I’m reading my daughter’s story. Same exact thing. Sick from age 3, now 17 and in excruciating pain, bedridden, wheelchair, losing vision. Neuro Lyme, Bartonella, Candida and Mold toxins. Pain is so bad 24/7, we can’t even use herbals or Abx as it causes herxing so bad she wants to die. Everything we do makes her worse and she wants to die her pain is so severe. All these years of DR hunting, false diagnoses, over $100k on medical, and she’s on deaths door having seizures and can’t even walk. Don’t know how to proceed, need a miracle. Blessings to you Kristina, get better girl !! If any medical professional reads this and thinks they can help my girl, please contact me. Thanks, Linda
Linda I am ask so sorry about your daughter. I have a similar situation with my daughter. I found something that seems to be helping believe it or niot. No I don’t make money off of it nor am I trying to push it on you. What seems to be working so far on my super sensitive daughter is essential oils. Would you or have you considered using them? My heart goes out to your daughter .
Kristina, I relate to you so much! I was bit by a tick in 1992, but didn’t even know about ticks. I was 39 years old. My whole body got stiff and 2 years later the anxiety and depression started and I was sent to a psychiatrist. I had the most god awful head pain and stiff painful neck. I also have fibromyalgia. In 2001 I got another tick bite, but by then I knew what it was. I had not been treated for Lyme since 1992. In 2001 I went to many “Infectious medicine” doctors and was finally able to find one at Boston Medical in Boston, MA. I cannot write anymore because my left hand has so many tremors. I never tested positive for Lyme as the CDC requires as I only had one positive Lyme band. I also tests indeterminate for Erlichiosis which should be under 1:80 and I came out at 1:80. I have suffered with twitching and many flareups. I did have to have brain surgery when I was 61 for 2 benign meningioma tumors pressing on the front of my brain leaving me unable to get up from a kneeling position. The tumors are actually growing back and if I live until 81 I will need another craniotomy. I am now 64 and still have Lyme symptoms and terrible Lyme arthritis in my knees. I am so glad to hear of other people who have this horrible disease because it is so lonely and it feels good to hear others.
So happy you are on the path to healing. How were you diagnosed and what is the treatment protocol? I have been in pain for the last 12 months and get the same rhetoric from the 5 doctors I have seen.
Wow Kristina- what a heartbreaking yet redeeming story. My 9-year-old daughter became ill in 2015 and her symptoms were so similar to yours. She had high levels of ANAs along with her joint pain, fatigue, headaches, stomach aches, etc. She got strep and began taking amoxicillin, which made everything worse. Her skin was covered in a migrating itchy rash and hives, some joints became swollen, and there were days that she could not lift her arms or walk due to the migrating joint pain. She also began having neuropsychiatric problems. It was just all so crazy to us because she went from an athletic, outdoorsy, motivated girl to a sick, tired, emotional, irritable child. She was hospitalized but the doctors ruled everything out and we followed up with a different rheumatologist who misdiagnosed her with lupus and put her on immunosuppressants. I don’t blame that doctor because she knew something was wrong and she was trying to help us – she was the only one who would -but it’s just very frustrating and sad. After that, my daughter’s neuropsychiatric symptoms got worse and her physical symptoms continued to the point that she had such horrible pain in her feet and her legs that she could not walk for days at a time. She was finally hospitalized again and devastatingly diagnosed with somatoform disorder, which is psychological. Fortunately for me, I had a friend who emailed me an interview with Alli Hilfigger who was promoting her book about Lyme disease. When I saw the interview I had so many bells going off in my head – I was so excited and I immediately did tons of research. My daughter’s reaction to the amoxicillin months before was likely a Herxheimer reaction! She tested Igenex positive on multiple specific bands for Lyme disease last summer but, after starting treatment, she actually tested CDC positive in November. Plus she was positive for Babesia, Bartonella, erlichia, mycoplasma and some other infections. She was also tested for PANDAS last summer and was positive! It’s so disheartening and sad that you had to wait so long for a diagnosis. It took us nearly a year to find the path to a correct dx and treatment, which I think is a good sign that the public is becoming more aware, which is good because people in the Lyme community need each other and we can help each other when nobody else can. My poor daughter bawled her eyes out in the hospital when one of the rheumatologists said in front of her, “I think she can walk.” She was so scared that we as her parents would stop believing her about her pain and her symptoms and that we would not continue searching for an answer to help her. It makes me cry just thinking about it. She is doing better and on a path to healing now that we have found the right specialist and the right treatment regimen. I hope that you can find that path for yourself and that you continue to be strong and motivated and I wish you all the best!
It sure sounds like Hoshimoto throditis
Know just how she feels. Is she doing anything holistically or through orthodox medicine to combat her nightmare. She is young. Add to the list of nasties failure to heal. Difficulty with surgery, poor wound healing, uncontrollable itching and symptoms that keep changing and moving
Kristina, I am so sorry to hear this!
If you do become a doctor please help all of those suffering with Lyme and specialize in it to help others like us.
My story is similar to yours. Except I was in my 20’s first time infected then infected a second time in my 40’s. Both times I was not in any woods. The first time I was in a house in Maine and the second time I literarily less that 3 minutes outside in a professionally groomed back yard in Silver Spings Marlyland. In the early 80’s I actually lived a few miles from Lyme Connecticut.
I finally got an accurate diagnose after 24 years and five hospitalizations with me begging and demanding a correct diagnosis to actually get one! Countless doctors over the years told me I was depressed. At one point I half believed them and took the antidepressants and felt crazy on just a few pills!
Every doctor I ever saw I began by telling them my symptoms all started with flu like symptoms which over the years continue to worse and increase in weird off the wall symptoms that migrated from day to day. Both times I was bit and infected I never had the rash but did experience the flu like symptoms. The second flu like infection was really bad.
Because of he delayed diagnosis and treatments I have many other diseases now. I also have two co-infections besides Lyme. The treatments I am suppose to take for Lyme from the Lyme literate doctor I have not been able to comply with because of all the infections throughout the years prior to being correctly diagnosed I was prescribed many antibiotics. Now I am having issues with the drugs themselves. Don’t even get me started on the way I was treated by the doctors post Lyme diagnoses! Main stream doctors follow the CDC guidelines which only tests up to 30 days max! Supposedly you are cured after that!! Yet here I was seven months on antibiotics for my last hospitalization with gastroperesis and on erythromycin an antibiotic used off label to help me eat still suffering symptoms of Lyme seeing an infectious disease doctor who supposedly treats Lyme told me I was cured since I was well over the 30 day mark and he could not help me! It took two years for me to find a Lyme literate MD who also specializes in alternative health. After starting treatment with her for the first time in almost a century I felt I was actually getting better! I found relief from many of my symptoms!!! I am thankful for my doctor, she is wonderful and many people travel from out of state to see her.
I hope you are seeing a Lyme literate specialist because antibiotics alone do not kill off the sphyrochette bacteria that literally drill their way through muscle and bone. They live in biofilm which is impervious for antibiotics to penetrate. A Lyme literate MD can help and has way more correct information to help beat this disease.
My life today 29 years out is still what you described suffering all those symptoms and my health continues to decline as I experience more and more symptoms and acquire more diseaes. I am constantly fighting off infections and I have had to isolate myself from everyone. Had I got an accurate diagnoses early on and the treatments needed I know I would not be where I am today.
Every organ and system is affected in my body. I also have this overwhelming heat from the babesia and suffer living here in the southeast.
Since my Lyme diagnoses and subsequent research I now know that I had Lyme related encephalitis which caused the pressure in my head so much so that I had projectile vomiting which caused me to vomit blood. I continue suffering issues and infections in my jaws too, it’s the strangest thing. No doctor nor dental specialist has ever wanted to help with it. Thank God I was able to find a Lyme Literate doctor here where I live. She too experrienced issues with delayed diagnosis for her daughter and she did research and correctly diagnosed her daughter and helped heal her. Because of that experience she specializes in Lyme helping others whose stories sounds similar to ours.
I was in college too and working as a single parent of two young girls. My initial goal was physicians assistant but ended up in the BSN program. Just a semester and a half from graduating I had my first hospitalization vomiting blood. Back then I could not drop the class and pick up next semester I had to drop out of the program. It’s still difficult for me to think about. My days and nights now are spent mostly in bed. Right now I am fighting pneumonia again. A few years ago I had walking pneumonia for 11 months and I was put on 40 days IV and pill form antibiotics and still had symptoms of pneumonia then was set to do another round of pill antibiotic but had an anaphalatic reaction and C Diff. This current infection has me worried as I have had severe breathing issues and I don’t want another hospitalization.
Did you know Lyme is contagious? My husband has it now. It is spread like an STD. Don’t share food or drink with anyone either. Both my adult children have been diagnosed with Lyme as well. My youngest just got bit here in Florida at the beach and got the bullseye rash. My other daughter most likely got it from Silver Sping Maryland. She recently got pregnant with her second child and worried about the baby. Her Lyme load is supposedly very low and in remission but Lyme spreads by blood. When the baby is born going to take umbilical blood and get it tested immediately and treatments started if baby is positive.
I wish you all the best with your health and healing and professional pursuits! I am always sorry to hear another person with a story like mine. Education is key! People are now becoming more aware of Lyme thank goodness for that. I hope you reach your pursuits in becoming a physician and I really hope you decide to help others like us. Many prayers are being sent to heaven for you and others like us for complete healing!
“Faith”
When you have come to the edge of all the light you know and you are about to step off into the darkness of the unknown faith is knowing one of two things will happen: there will be something solid to stand on; or you will be taught to fly. Author unknown