Writing this story has made me angry, emotionally ill and very haunted. On May 22nd 2012, I contracted Rocky Mountain Spotted Fever, I struggled for almost 4 years without being diagnosed. I saw 30 plus doctors throughout this span of time. I was in severe pain. It consumed my life. My back, throat and my head constantly hurt. When I laid down at night the pressure in my head became very intense. I developed cognitive issues and tingly sensations in my cheeks. I became very ill and fatigued. At times the pain was so strong, that I would have to grab on to something so I would not fall. I could feel it from the top of my head to the soles of my feet. One day I was out shopping and by the time I drove home, I was having chills, along with a fever and became disoriented. Fatigue had set in and I can barely navigate throughout my house. I had to call my husband home from work. This was the first time calling him home in the 16 years we have been married.
The first call to the doctor’s office was May 24th, 2012. I called my Primary Care Physician’s office to set up an appointment. I was seen by one of the office’s doctors, my regular doctor was unavailable. The doctor I saw misdiagnosed me with upper respiratory infection and sent me home to rest and take ibuprofen. I did not improve. Since no improvement in my illness was made, I called the doctor’s office a second time, on May 25th, 2012 and was seen by my doctor’s PA. She misdiagnosed me with bronchitis. She prescribed clarithromycin, and told me to go home and rest. Towards the end of me taking the prescribed medication, I had an extremely strong esophageal spasm. Again, I was grocery shopping and it came upon me quickly and severely. An extremely strong spasm started in my chest, went up into my throat, through my ears and to the top of my head. It felt as though it may have been a heart attack. I made my way out of the store to my vehicle and after about 30 minutes or so it had subsided. I decided to go home instead of the ER thinking the antibiotic may have caused the spasm. The antibiotic did nothing for me, I never became well. After seeing my Primary Care Physician many times within the first month, who happens to be an Internist, as well, was not able to find the answers to my illness.
My Primary Care Physician then referred me to a GI specialist. The specialist called for an endoscopy. This was done in June 2012 – I was hanging on for dear life. After the endoscopy, I tried scheduling an appointment to see the specialist, but his nurse refused to set the appointment. Three weeks later I received my test results in the mail. I was misdiagnosed/diagnosed with esophagitis, gastritis and an infection in my stomach. I tried to schedule an appointment with the doctor to discuss the findings, but the first appointment he had available wasn’t until October 31st. That would be 3 months after the testing was done. I became frustrated, and felt helpless that this doctor had an endoscopy performed on me, but never followed up with an appointment or any sort of treatment. I never was able to see the doctor. My Primary Care doctor then referred me to another GI specialist that was a friend of his. Later, this would come back to haunt me.
After seeing this doctor, due to my Primary Care doctor’s referral, the other doctors in his network refused to see me. I understand now that it was a conflict of interest. However, I was not aware of these network rules. I was just following my doctor’s orders to find help. The GI specialist he referred me to conducted no tests or lab work, only a consultation. He told me that I was fine and to go live my life. Disregarding the fact that I had lost 16 pounds and was VERY ill. I tried to follow his misdiagnosis but I couldn’t do it. I was too sick. I struggled for 8 months with NO medical help. I couldn’t find a doctor who would help me. Most of my time was spent in bed, feeling horribly sick. My body began to respond to the illness. I was completely out of balance. I began to lose my hair and started wondering what was wrong with me. I began to think about mortality. It was frightening. I struggled to go to bed without fears. As my symptoms grew stronger, I grew weaker. My son was desperately searching for answers which inspired me to keep going and not give up this fight.
During Late August, my back started hurting. It hurt for a few weeks consistently. I decided to see an orthopedic specialist who called for an X-ray. Nothing was seen on them. He called for a MRI of my lumbar spine, it also showed nothing. No diagnosis was made. In December I came to a crossroad in my life. I decided that if I wasn’t going to get well, I would need some coping skills to handle the illness. By this time, I was afraid I may never get my life back. Later, I would decide to see a psychologist and ultimately a psychiatrist. After many attempts to see a doctor locally, and being rejected by everyone, it was apparent I had no place to turn. I even reached out to my previous GI specialist. When calling & pleading for help, I was told by the receptionist that no doctor in this office will call you back or see you. Feeling helpless, I then decided the only place to turn would be the Mayo Clinic. In doing this, I had to insure insurance coverage. Fortunately, my insurance company would cover my visit. When speaking with the insurance agent, he asked his brother, who is the CEO of a major medical facility in Dallas if he could refer a doctor to me and he did. I was touched by my agent’s compassion for me and his unsolicited act of kindness. Fortunately, the referral was for a physician in my area. I would however, in the future, contact the Mayo Clinic, who never responded to my request to be seen.
In January 2013 I saw a new GI specialist through the referral I received. He called for the second endoscopy. The esophagitis, gastritis and the infection in my stomach had healed. I did develop esophageal spasms for awhile and was prescribed medication after having the severe spasm. I no longer take this drug. The new GI specialist ran all of the pertinent tests. All the test came back normal. He still couldn’t Identify the illness or what caused my problems in the first place. No diagnosis was made AGAIN.
The GI specialist I had been seeing referred me to a physician in his network. The Primary Care Doctor I was referred to, became my doctor. He never diagnosed me. He told me that he was capable of prescribing me anti depressants. After seeing him for awhile and trusting his medical opinion, I began to take the prescribed anti depressants which caused me to start zoning out, having black outs as well as uncontrollable behavior. I was losing my self… the pain and the prescription drugs prescribed by my doctor were destroying who I was. Still nothing was working. With the side effects that were occurring, I decided to stop taking the drugs. I weened down as one should and eventually found my way back to myself.
The new GI specialist also referred me to go to a pain management physician. The doctor called for MRI’s, X-rays and CT scans. One of the MRI’s he called for was to examine my brain and my entire spine. On the MRI of the brain my pain management doctor’s PA misdiagnosed me with having a mini stroke. After I brought the diagnosis to the Pain Management Doctor’s attention he reviewed the MRI and the PA’s diagnosis and disputed it. He said I had not had a mini stroke and after reviewing all testing, he said nothing was found. There was no diagnosis, again. Because of my serious back pain, I started receiving steroid injections. The injections never worked! He then referred me to a physical therapist. That too didn’t help. He told me he did not know what was wrong with me and couldn’t help me.
Between 2013-2014 I had seen three ENT specialists in my area. I couldn’t speak above a whisper for almost 2 years. My throat stayed irritated… I was a singer and played the piano. I couldn’t sing anymore; my voice was gone. It was devastating since music and song were a huge part of my life. To search for answers the ENT specialist placed a camera down my throat, which found nothing. No diagnosis was given and no other testing was called for. One of the specialists told me I could go to speech therapy. However, how can you go to speech therapy without a diagnosis.
In March 2014, I began to see a phycologist. We began to address the medical issues on a once a week basis that proceeded for about a year and a half. I still see him periodically as his schedule permits. Through him I found guidance, and at times felt more at peace with the answers he provided me with. It helped me not feel so alone in this world.
In August 2014, I traveled to NYC, to see an ENT specialist that is nationally renowned. He misdiagnosed me with a neurological injury caused by the virus that affected my right vocal cord. Later it was discovered to be caused by the Rocky Mountain Spotted Fever. He found this by placing a camera in my throat. I also provided him my prior CT scans of my neck per his request. He referred me to a speech pathologist. I did throat exercises every day for one year. I saw him for a follow up appointment, and that was the last time I saw him.
I had to have my Gallbladder removed in January 2014, it became dysfunctional. I am convinced that it was caused by the Rocky Mountain Spotted Fever, which had yet to be diagnosed.
I began seeing an Endocrinologist, in the beginning he tried to maintain my hormones and body functioning levels. They were up and down and uncontrolled causing hair loss and other issues. He did an ultra sound of my thyroid to make sure there were no problems. My thyroid was small, but normal and hypoactive. Due to the imbalance, I am still monitoring my thyroid and adjusting medication. He tried fervently to figure out what my medical problems were, with no findings. That’s when he referred me to a Rheumatologist for auto immune testing. He suggested I follow up to see him in 6 months, but my primary physician requested for me to see him sooner, so I did.
Several auto immune testing was conducted. The results showed high numbers & markers. I was misdiagnosed with costovertebral joints and connective tissue disease. He came to that diagnosis through a process of elimination. I didn’t have RA and I didn’t have Lupus, so he diagnosed me with connective tissue disease, but couldn’t prove it. In March 2015 I asked him to run a Lyme’s Disease test based upon my sons continued research and seeing the parallel between my symptoms and those of Lyme’s Disease. I live in Oklahoma, which is one of the 2 states that has the highest tick population. I live in the country on a large acreage. I have dogs, one of which had Rocky Mountain Spotted Fever twice. I told the doctor about this, so he finally relented and agreed to do the test. To my dismay the test came back negative. So I asked him to do the second test. It too, had negative results. I didn’t know where to go to from there. I was hopeless. I didn’t know what test to ask for next. At this time, I didn’t know that the test would come back negative if you had Rocky Mountain Spotted Fever long term.
Grasping for straws, a friend of mine suggested that I see another Pain Management doctor. She spoke highly of him and I respected her opinion so I followed her recommendation and scheduled an appointment. I described my symptoms to the specialist and he reassured me that he could help me. I was desperately hoping he could. I had exhausted the possibilities of getting well. Before misdiagnosing me with Fibromyalgia, the Pain Management Doctor gave me rounds of shots in my neck and in my back. Again, the treatment didn’t work and caused my neck to hurt, which it still hurts today. I tried to tell the doctor that the shots were not working, but he did not listen. Finally, I told him I did not want anymore shots. He then prescribed me a new pain medication, Nucynta an opioid. It’s effect on my body was horrible and I ended up in the ER due to a bad reaction to the drug. When I told the pain management doctor my reaction, he offered me more drugs. I told him “no, no more drugs!” They did not work for me. He told me that he couldn’t do anymore for me and suggested that I see another doctor. I just by chance had an appointment with my Gynecologist the next day. During my visit with my Gynecologist, I told him the conversation that was had with my Pain Management Doctor. He immediately became angry and said that I did not have Fibromyalgia. He immediately called for a full panel of all tick borne diseases, as well as an Echocardiogram. It had been almost a year since the first Lyme disease was requested before the full panel of all tick borne diseases was called for. On January 20th, 2015 the lab work was done and it was then it came back positive for Rocky Mountain Spotted Fever and a co-infection. It took a week for the lab results to come back. It took me almost 4 years without treatment to get to this place to receive a diagnosis. Finally, I had my answer. I am so grateful he listened to my plea. I am better today because of my Gynecologist. He is the only one I trust for my medical wellbeing. He reached outside of the medical box and found a treatment for the RMSF.
I was prescribed an antibiotic and I took them for four months. I then took the lab results to the Rheumatologist. He disregarded the results because he neglected to read them. I questioned him, and asked him if he read the results. He picked up the test and realized that I had been diagnosed with Rocky Mountain Spotted Fever. His response was “I’m sorry, I didn’t think of it.”
My Gynecologist that ran the test and found the Rocky Mountain Spotted Fever referred me to a local Infectious Disease specialist. The first available appointment was two months away. The Infectious Disease Specialist disputed my symptoms for Rocky Mountain Spotted Fever. The doctor told me if I had it, and didn’t receive treatment that I would’ve died or would’ve gotten over it. She told me that 20% of people have the antibodies for Rocky Mountain Spotted Fever. She also told me, that if I had it, I couldn’t contract it again. She then ran lab work to test for Osteoarthritis, West Nile virus and other tick borne diseases. All of which came back normal. I wasn’t comfortable with this doctor and did not agree with her assessment.
I sought an Infectious Disease Specialist in NYC to find answers. He did lab work and confirmed that I did have Rocky Mountain Spotted Fever and the co-infection Bartonella. It was such a relief to finally have a doctor that understood all of my symptoms. He described them one by one. He changed the antibiotic and sent me on my way.
All though I was taking the antibiotics, I didn’t improve. We are now treating the damage and not the disease. The symptoms have been the same along, just not as severe now. I am currently on Human Growth Hormones, HGH. This is my Gynecologists treatment plan. I have been on HGH for four and a half months. The treatment plan is for 9 months, and I am currently half way through it. My HGH when I started was -1, and after 4 months of my treatment, my HGH is now at 2.9.
I am currently taking Tramadol for pain, and improving slowly. After being diagnosed and put on a treatment plan, I scheduled an appointment with two of the medical doctors that were trying to help me. I wanted to thank them for caring and also wanted to create awareness for this devastating disease. Both of them told me they would change their practice to call for tick borne disease testing, especially for people like me who searched for answers for such a long time and couldn’t find them.
I am thankful for my son, for his undying love, commitment and to finding the cause of my illness. It was because of him I was diagnosed. I gave him life; he gave it back to me. I am thankful I am on a path to recovering. I trust that someone down life’s journey will read my story and find answers to their questions. I am very thankful and count myself very blessed to be alive and able to live my life as it is today. I am thankful for every moment.