Hello again! Thanks for following my story. My journey with symptoms from Tick Borne Diseases (TBD) began in 1998. I have no recollection of a tick bite or bulls eye rash.
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In 1998, I was diagnosed with Celiac Disease, an autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. The doctor gave me a steroid (prednisone) to help with the inflammation in my digestive track.
Little did I know how much trouble a steroid could cause a person with TBD. I have since learned that steroids suppress the immune system and the last thing a person with TBD would want to do is lower their immunity and make it harder for their body to battle these infections.
At that time, I had no idea that I had TBD and I didn’t know the problems that a steroid could cause a person with TBD. So I took it. Looking back, it was like I awakened a beast inside of me. I became so sick, I was bedridden. It was the worst “flu” like illness that I ever had. I will never forget the night sweats. They were so bad that each night I had to change both my clothes and all the bedding for at least a week, if not longer.
Then I developed a terrible respiratory infection and was diagnosed with pneumonia. That was probably a good thing because I was given antibiotics. Last but not least, came my first bout with debilitating arthritis. The arthritis was so bad, I could not turn a doorknob to open a door. I could barely walk. It affected me from head to toe.
As all of this was going on, my father did some research and found a top NYC doctor that specialized in Celiac Disease. When I went to the specialist, he immediately took me off the steroid. He confirmed my Celiac Disease diagnosis and was extremely concerned about what else was going on with my health. I was tested for Lupus and referred to a NYC rheumatologist for my symptoms.
By the time I got an appointment to see the rheumatologist, my symptoms had subsided. She ran many tests and everything came back normal.
After this first flare subsided, with time, I got my strength back and continued to live my life following a gluten free (gf) diet. I felt much better on this new diet. I was able to exercise again. Exercise, the dear Lord above, and my family have been my saving grace throughout this journey.
Exercise is one of the few things that I could do for myself that helped me feel better. I dragged myself to the gym many-a-day. I later learned the importance of sweat and detoxing with TBD. TBD releases a lot of toxins in your body and sweating is great way to release the toxins via the largest organ in your body, your skin! It really makes sense why I felt so much better after exercising.
Fast forward to 2002. After the birth of my first child, I started having problems with my thyroid. I became hypothyroid and over the past few years was diagnosed with Hashimoto’s Thyroid Disease (an autoimmune disease causing hypothyroidism or underactive thyroid). I manage my thyroid disease with thyroid hormones.
I also had problems with my wrists and thumb joints. The pain in the bottom of my feet was awful. I had these favorite pair of shoes that I would wear inside my house, like slippers, to ease the foot pain I suffered from. I could not wear regular slippers because they did not have enough support for my sore feet. I also needed really supportive sneakers for exercising or my feet would give me trouble. I would tell these symptoms to my doctors, they would run blood work, and the tests always came back normal.
In 2004, after the birth of my second child, my facial, jaw and neck pain became unbearable. I went to a dentist and was told that I might have TMJ. I went to a TMJ specialist that told me I did not have TMJ. I reported back to the dentist and he then told me to see an ears, nose and throat doctor (ENT). I saw an ENT and unfortunately he did not offer me any explanation for my pain.
After consulting with the dentist, I finally had a tooth pulled with the hope that a past root canal was not done properly and could possibly be the source of my pain. Regrettably, this dental procedure did not solve my problems.
In the winter of 2005, I developed another flu-like illness followed by a terrible bout of arthritis that subsided in about two weeks.
I continued to suffer from these symptoms and pain for years. As I call to mind all of these memories, I am stunned how I lived like this. But the truth is, I was not living. I was existing. My goal each day was to survive it. It took everything ounce of my being to live this life of pain and suffering all the while taking care of a family.
Ironically, taking care of my family is what gave me the desire to be well, healthy & strong. Their love gave me the strength to fight through all my pain and a determination to find answers to my mysterious health problems.
So I kept moving on, living my life, exercising and taking the best care of myself and family that I possibly could. I tried to eat well, gf always and organic as much as possible. I prayed and never gave up hope that I would find answers and be okay. I had both good days and bad days at this time.
In the summer/fall of 2007, after the birth of my third child, the bladder pain began. I suffered from pain and frequency. I really thought I had a bad urinary tract infection (UTI). I saw a urologist. Tests were performed and everything was normal. He told me that it was normal for this to happen to women after childbirth. The pain would come and go. Taking care of three small children, it was very easy to just keep busy and deal with the pain.
In early 2008, even though I was on a strict gluten free diet, I developed severe GI issues once again. I went to my GI specialist in NYC and was diagnosed with a fructose intolerance. I was told to follow a low fructose diet and given antibiotics, which helped me.
I felt really good on the low fructose diet. I basically ate a green diet. As I felt better, I went back to my normal gf diet with a realization that a low sugar diet is in my best interest. At that time, I had no idea that I had Lyme or that the Lyme bacteria feed off sugar. I now understand why I felt/feel better on a low sugar diet.
In the fall of 2008, I went to the urologist again for bladder and pelvic pain. I had an ultrasound. There were no obvious findings or infections and I was recommended to have further bladder tests which I did not make time for. I was taking care of a 6, 4 and 1 year old. My days were full and with God’s help I made it through them but I would collapse once they were all snuggled in bed.
In the summer of 2009, I went to visit my sister in Texas and got very sick. It was so hot there. After spending some time in the hot sun, I once again developed flu-like symptoms with severe chills, night sweats and a horrible headache. I went to an Emergency Medical Office (EMO) and was diagnosed with a sinus infection and given antibiotics and a steroid (prednisone). I took it again because I did not know that I had TBD and I got so, so very sick.
With the grace of God, as sick as I was, I managed to take my three kids on a plane back to NJ and was in the hospital the next day. They did a spinal tap and diagnosed me with meningitis. My spinal fluid was checked for various things, including Lyme, and everything was negative. They told me a virus caused my meningitis. After the meningitis, I had another bout of arthritis.
I knew something was terribly wrong and I went to see my GI specialist in NYC after this illness. He ran many blood tests including one for Lyme and advised me to have a consultation with a neurologist. As I was told, I went to see the neurologist. The neurologist recommended a brain scan, which I did. I was told everything was fine from both doctors.
Over the next three years, I continued to suffer unknowingly from TBD. In 2010, I went to a top ENT at NYU who found some structural issues in my sinuses which may have been contributing to my facial, jaw and neck pain. As per his recommendation, I had sinus surgery in 2010 to correct these structural problems. Once again, another procedure did not relieve my pain.
My bladder and pelvic pain became so severe as time passed. At my lowest point, I was going to the bathroom every 20 minutes. I barely slept anymore. I was up all night going to the bathroom. I didn’t want to leave my house. I couldn’t work, shop, pick up the kids from school or exercise without having to run to the bathroom. I wouldn’t go anywhere unless I knew I could get to a bathroom. I missed out on lots of things. I missed many of the kids sports games because I thought to myself, how could I be out on a soccer or football field like this? One summer I barely left the house. I wouldn’t consider a trip to the beach, one of my favorite places on earth. I couldn’t continue living like this any longer. Something was very wrong with me and I needed help.
In 2012, I had a hysterectomy and was diagnosed with a bladder disease called Interstitial Cystitis (IC). IC is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild to severe. It was the IC diagnosis that finally led me to a Lyme Literate Nurse Practitioner who properly tested and diagnosed me with Lyme & TBD.
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Lyme & TBD diseases caused my IC and all of the other mysterious symptoms that I suffered from for all these years. I just couldn’t believe that I had Lyme & TBD when I was tested many times in the past. The Lyme Literate Nurse Practitioner was not surprised by this at all because she explained that the tests that most doctors use to diagnose Lyme and TBD are not reliable.
I went back and looked at all my test results from the past. I found a note from the GI doctor dated 12/6/2009 that said“Results are fine!” Behind the note were the test results.
In 2009, I did not look at the test results, I just read my doctors note that everything was fine. In 2012, I looked at all of the details and I found the results of a Western Blot done in November 2009 at the Lyme Disease Laboratory at Stony University which stated:
WB IgG: Indeterminate (Negative) IGG Bands (kDa): 18, 41
WB Comment: “While there is some band reactivity, these results do not meet the CDC criteria for a positive Lyme Western blot. A Western Blot that contains specific bands but does not meet the positive criteria is considered “INDETERMINATE” by the New York State Department of Health.
Please always glance at your Western Blot results. One of the antibodies or “bands” may be positive. I had evidence of Lyme Band 18 but because of the CDC guidelines I was not properly diagnosed and continued to suffer and get sicker from these infections over the next three years.
It was very upsetting to learn that the tests my doctors used to diagnose Lyme were unreliable after I was tested and suffered from TBD for all these years. If only I had known that I could have seen a LLMD to be properly tested and diagnosed, I would have been spared years of suffering and wondering things like, “what is wrong with me?” and “why can’t anyone help me?” I also would not have gone through two unnecessary surgeries and would not have missed out on so many memories with my family because of my health issues.
This is why it’s so important for me to share my story. If you know anyone who is struggling with mysterious health problems that doctors can’t explain, please see a LLMD. It can’t hurt and you will have confidence that you were properly tested for TBD.
Please check in next week as I continue to write about my Lyme and TBD journey in Chapter 3 titled, “I’m not Crazy.”
Have a great week,
Megan