Lyme Journey Part 1
My Lyme disease journey is not unlike hundreds of thousands of others who seek answers for years. I hope that it can help you search for answers. I am not a doctor so consult with your doctor before you start any new regimen or diet. Grab a drink or a snack because it is a long one. ;)
My journey started in 2012. That is when I had noticeable symptoms. The more that I think about it, things were slowly creeping up on me. After 8-9 months of being sick constantly, multiple antibiotics & doctors, chiropractor, blood testing, and a trip to the Mayo I was ready to try anything! First, I tried using essential oils. The worst thing that could happen is it wouldn't help me. I was at the point that I couldn't walk up my stairs, empty the dishwasher without being winded, read a sentence without coughing so hard I gauged, or breathe normally while sitting. At the time I was an elementary school teacher so as a teacher you are talking and on your feet all day. By 5 pm every night for years, I was ready for bed. I used to come home & nap for an hour so I could make dinner then was in bed by 8, while still waking up exhausted. I slept in my work clothes for about a year because I thought an extra 15 minutes of sleep would mean I wouldn’t fall asleep on my 30-minute commute. I was falling asleep daily to and from work but doctors didn’t take it seriously.
At the time I was so sick that I couldn't cognitively process or describe how I felt other than saying- everything hurts all the time. After so many tests and doctors telling me I was fine or being told I was crazy, I stopped sharing my symptoms. At my worst, I would say that I was functioning at a 2nd-3rd grade level. There were times that I forgot my own name, how to subtract, or even what simple objects are called. Sleeping was the only time I found relief. That was if I could actually fall asleep. At my worst, I experienced about 75ish symptoms daily for years.
The world of essential oils led me down a holistic path where I learned from others. It is what truly led me into learning more. I was able to hear stories from others who had similar issues. I cleaned up my diet to what I thought was clean eating at the time. The change in diet helped but it didn’t completely solve everything. This led me to the ENT to see if I needed surgery to help reduce migraines and chronic sinus infections. When I got a sinus infection, it lasted months and didn’t clear with the first round of antibiotics. Little did I know at the time, antibiotics caused more problems. At that point, I was used to having a headache or a migraine daily for a few years.
I had sinus surgery in May 2016 because the ENT said it would get rid of my sinus infections & migraines. It did for about 2 months post-surgery but then everything came back. The sinus infections were caused by Candida and the migraines were caused by Lyme & coinfections so surgery was not needed. The antibiotics I was given post-surgery only made everything ten times worse. (My 75ish symptoms are listed below.)
May 28, 2016 post to Facebook
Surgery Snorkel! The post sinus surgery boredom has officially hit when you seriously think about how you could make this invention. I can't breathe out of my nose due to swelling, congestion, packing, and splints so I use a bendable straw like a snorkel when I sleep to keep from drooling.
My Daily Symptoms:
Extreme fatigue. Hair loss. Night sweats. Random fevers. Digestive issues. Inability to regulate my temp. Blurry vision. Bloating. Horrible brain fog. Inability to concentrate or remember things. Post nasal drip. Itchy eyes. Random swollen glands. Sore throat. Racing heart. Loss of appetite. Leaky gut. Hormone imbalance. Anxiety. Depression. Eye pressure. Weak urine stream. Urinate multiple times in a few hours. Metal taste in mouth. Tooth decay. Bone aches. Ringing in my ears. Acne. Dry flaky skin. Persistent cough. Debilitating migraines that lasted for weeks. Excessive dry mouth. Chronic sinus infections that lead to sinus surgery that didn’t solve the problem. Weak immune system. Joint pain. Never had a cavity in 30 years & got 5 in a year. Extreme sugar cravings. Dizziness. White coat on tongue. Brain zaps. Circulatory problems where feet and arms fall asleep super easily. Musky body odor. Cognitive & processing problems that were so bad I couldn’t think of the name for everyday items like the toaster. Flu-like symptoms. Insomnia. Irritability. Nausea. Tingling & numbness in feet & hands. Cold hands/feet. Stomach cramps. Loss of muscle mass. Food intolerances. Inability to work out. Depersonalization. Air hunger. Cement legs. Legs randomly give out. Sleep paralysis. Hand tremors. Inability to hold objects because I couldn’t close my fingers around objects. Burning feet. Vertigo. Extreme sensitivity to sounds, smells, and textures. Random eyelid swelling. Flashbacks of moments in my life all the time. Night terrors. Personality changed. Random loss of balance. Extreme hand pains. Hallucinations.
I had asked a few GP’s about Candida but they had never heard of it and told me my blood tests were perfect so I must be healthy. I even heard that it was in my head. Despite the very long list of symptoms including falling asleep driving daily, they insisted that I was healthy or crazy. I demanded multiple tests including blood & urine tests, asthma, autoimmune disorders, and diabetes testing. The last doctor I went to gave me a steroid shot after much disagreement on my part. Within an hour I felt better than I had in YEARS! That was it for me to realize I finally had enough of feeling like garbage daily and really start demanding answers.
What triggered me to go in, was my lack of clear cognitive thinking and falling asleep driving daily no matter how much sleep I got. I was struggling to find the correct words and would often mix things up. I remember having to describe objects everyday items because I couldn’t remember what they were called. This happened multiple times a day. I would ask my students for something simple like scissors and would have to describe it by saying “The thing you cut with.” I always just blamed it on being tired or having a headache/migraine.
In October 2016, I set up an appointment with an MD that also has certifications in holistic health to see if I had Candida. I also set up an appointment with a neurologist to discuss the migraines and inability to find correct words and mixing up words in sentences which only offered prescriptions. Prior to that appointment, I met with a medium. Like I said I was willing to try anything! I asked her to tell me about my health. She talked for 45 minutes about all the issues in my body and was spot on. Then she kept saying “Why do I keep seeing a bug? Were you bit by a bug?” This led to me continuing to dig as it was a sense of validation.
I put myself on a Candida Cure Diet in October of 2016 before knowing that I had Lyme disease. The diet helped clear up a lot of symptoms but caused an intense herx reaction because I went cold turkey on everything in one day. I do not recommend that. I kept a journal of my experience and here is an explanation of how I felt during that time.
“My die-off lasted for about 7-8 months. During it, I had swollen glands, sore throats, drippy nose, post nasal drip, random fevers, and felt achy like the flu.”
Even after feeling a little better on the “Candida Cure Diet,” I noticed that there were still too many symptoms left. During what I thought was the Candida die-off period, I also had lots of other new symptoms that I couldn’t explain. This led me to look into Lyme disease. My cousin has Lyme so I knew a little bit about it. I knew from her to skip the Elisa blood test because it is a waste of time and money. I had the Western Blot blood test. I remember when it came back negative that I was so disappointed because that meant the search continued. I also had a feeling in my gut that I had it. Later I learned that the blood tests for Lyme are highly inaccurate (50%) unless you pay hundreds to thousands of dollars for the IGENEX or Vibrant America tests which insurance doesn’t typically cover. Not to mention that per the CDC you need to have a certain number of positive bands and certain bands positive to be considered “CDC positive.”
“A negative on the Elisa or Western Blot blood test does NOT mean you do not have Lyme disease or coinfections.”
Fast forward to June 2017. I went to a Lyme doctor that treated my cousin and who found success with utilizing LymeStop. I was given a heads-up that the treatment seems very strange but I was willing to try it. I went to Dr. Ben to get a diagnosis. It was $150 for a diagnosis using vials which is similar to muscle testing. He never looked at all the patient information that I filled out and brought with me but he was spot-on with my symptoms. Sure enough, Lyme, Candida, and SIBO came up right away. He asked about my mother’s health. I said she has MS but is doing well considering. Dr. Ben said that she needed to come in to get tested for Lyme because he was almost positive she had it. Then he asked if I have any siblings and asked about their health. They later were tested and both have it, so my sibling and I got it in utero. I still wasn’t sold because it all seemed so weird on how he diagnosed me. At the time, I was pretty hippy/crunchy but even this took a bit to digest.
So I waited to see another Lyme Literate MD in St. Paul (Azani Stoddard). I sat with her for 2.5 hours and she diagnosed me based on my symptoms. It was $650 for me to talk with her to get the second diagnosis. Insurance didn’t cover either of those appointments or diagnoses because it wasn’t a blood test. So according to the CDC, I do not have Lyme. She told me that the only reason I was not completely bedridden was because of all the changes that I made on my own to support my health. (Acupuncture, diet change, supplements, testing, ditching the chemicals, detoxing, taking a break from the intense workouts, saying no to plans, etc) Azani said all my hours of googling really paid off. She was also the first person to point out my Bell’s Palsy. At the time, I had not noticed it. My only goal was to survive one minute at a time.
Fast forward to September 27th, 2017. I choose to do LymeStop because it is a natural treatment. I am personally against antibiotics. With my Candida and SIBO, antibiotics are not the best plan and with all the research that I did on antibiotic use for late stage neurological Lyme, I had yet to hear a success story. It took me about 2-3 months to get into Dr. Ben. Lymestop.com will have more information about this treatment or the LymeStop Support Group on FB is a great place to look around. My LymeStop highlight bubble on Instagram details my journey. It is magnetic therapy to activate the immune system so it is strong enough to fight infections again. That is not a scientific answer but the short easy answer. The use of magnets along with a Paleo-like diet, detoxing methods, supplements, and rest make up the treatment plan. He uses vials with infections or bacteria in them like muscle testing to determine what infections you have and where. It is not invasive at all so it is a great option for children. There are two doctors in the US that use this technique. One in WI and one in Idaho. It was $3,000 out of pocket for diagnosis, treatment, 3 months of supplements, and the 3-month follow-up appointment.
