Justin vs Lyme
$1,401 raised
4% of $32k goal
11 contributors
43 Weeks running

Here is an abbreviated history of Justin's health journey written by Justin:

 

Highlights of Medical History Listed Chronologically (written by the patient Justin Green; note - GI issues are discussed in case you are prone to becoming queasy) :   

 

    • 2008-2010 First Signs? Developed what a Podiatrist called “Plantar Fasciitis” after jogging about 1 mile.  I could not walk the next day (I crawled to the bathroom).  I now believe this was my first major indicator that something was wrong.  Also, I developed a scapular winging in my shoulder associated with pain and inflammation.  This went away with a couple of weeks of non-use.
    • Summer 2011 – Developed Scapular Winging with pain and inflammation during an extended road trip across the country and back (it progressively got worse as the trip went on). 
    • Summer 2012 - 1 year later, my scapular winging had not gone away.  I sought out care from a group of Orthopaedic Surgeons. My treating physician and EMG Physician diagnosed my scapular winging to be the result of Long Thoracic Nerve damage diagnosed through an EMG and nerve conduction study.  The orthopedic surgeon who diagnosed me told me that he typically sees this in car crash victims – he believed that there was something underlying this, but he wasn’t sure what it was.  This Dr sent me to physical therapy and put me on Voltaren. PT brought me no relief.
    • Fall 2012 GI Issues - I quit my job and moved home to parent's to rest and allow my shoulder to heal.  While taking the Voltaren, I developed a GI track issue that was very painful.  I stopped the Voltaren, but the GI issues stayed.  I felt pain all through my GI track from top to bottom.  My bowel movements were not consistent (but were not diarrhea-like).  They seemed “half-baked” like they weren’t properly digested and processed.  A Dr thought I might have an ulcer and put me on a couple of antibiotics. This did not help.  
    • Thanksgiving 2012 – I realized that a supplement I was taking might be adding to the problem.  I was taking 5-HTP and another neurotransmitter supplement (I had taken these since the spring of 2013).  I stopped taking them. I felt better for a day , but then my GI problems came back, but they were different.  There was no longer the burning as my pills went through my system, but it was like my system could not absorb my food at all.  I was in a lot of pain, and my rate of weight loss increased .
    • Christmas 2012 ROCK BOTTOM – EMF and MCS – I woke up in the middle of the night on Christmas having a very painful almost allergic response to the world around me.  I have come to call this Electromagnetic sensitivity (EMF Sensitivity) and Multiple Chemical Sensitivity (MCS) .  
      • There was a chemical on my sheets (these were new sheets), so I washed the sheets and that took awaythe burning, tingling of the skin.
      • I also felt a pulsating in my body, it came on particularly strong as I got to a half-asleep point.  It was like a heartbeat, but I would take my pulse on my neck, and I noticed it was not the same. I tried different beds in the house, and I could not get past the pulsating in my body to find sleep.  Eventually, I bundled up and went to the car in our garage (it was 20 degrees outside). I was finally able to sleep. This is where I slept for the next few days.
      • I also had memory issues (my mother says I seemed like an Alzheimer’s patient).  I had problems stringing sentences together. I had motor function issues , my words wouldn’t come out right.  I had terrible arthritic stiffness throughout my whole body.  I walked like a drunk Frankenstein.  I had intense pressure and pain in my head and around my neck.  
      • I also had sensitive points in my body that are classic to the diagnosis of Fibromyalgia .
      • I was down to 145 lbs (normally I had weight 195-200 [I am 6 ft tall]), and losing weight very rapidly.  My diet consisted of a few things that kept my GI track from feeling unbearable pain – Tilapia and avocados mostly.  I ate six meals a day, but nothing was sticking to me.
    • January 2013 – In fear of losing my life, I tried to research what I could.  I found out that people who faced fibromyalgia did well in hot places.  Desperately, I took a one way flight to Florida. I arrived in Florida and almost immediately, I felt a major decrease in the pain in my body.  Within a few days, my body was able to accept food that I had not eaten in months. My body was craving saturated fats and accepted them well. My stool started looking much more normal.
      • Within a couple days of arriving in Florida, I received a call from a GI Dr I was seeing at home.  I had received a positive screening for C Diff., and he put me on Flagyl.
      • I assumed that we had found the problem and felt that I could return home  After 4 or 5 days in Florida, I returned to Ohio.
      • Within 4 hours of arriving home, my symptoms returned.  I pooped a lot. It was like my bowels were just shoving everything out – it wasn’t diarrhea, but it was “half-baked.”
      • 2 days later, I returned to FL.  Immediately, I felt major relief.  The pressure and pain in my head significantly decreased, my full body pain decreased, I was putting sentences together much easier (I was much more eloquent before I became ill), and my body was craving saturated fats.  
    • Spring 2013 to Fall 2013 – Learning and Stabilizing – I worked on putting on weight.  I also worked to find a safe place to sleep.  I still was unable to sleep indoors due to the pulsating in my body.  
      • Eventually, after trying a few houses, I ended up at a friend’s place on an island.  The two places I did best were on islands. I started recognizing and understanding what affected me: wifi, tv, cell phone (calls & network & wifi use), radio towers.  After gaining some weight I was able to move indoors after purchasing a lofted bed. God provided for me during this time, and I am extremely grateful for his help.
      • A physician put me on Cymbalta which helped for pain. (He put me on at 120 mg, but it felt like the walls were caving in…it was just too much, so I went to 60 mg.  I met with a rheumatologist who said the Fibromyalgia dose is 60 mg. It has helped me.)
      • I had terrible neck pain and started wearing a neck brace to help my neck.  I also had very severe allergies and started wearing a painter’s mask (a big professional one) particularly when I slept (this was on top of the loratidine I was already taking.) (I no longer needed either the neck brace or painter’s mask persistently after the Fall of 2013).
      • I started seeing lots of Dr’s and have been tested for many things, all coming back negative.
        • I had a Stress Test , an MRI of my brain as well as several other neurological tests all coming back negative.  I saw an acupuncturist, other rheumatologists, several physicians (you can see in my chart) and did several blood tests and everything would come back really normal.  I saw a couple of GI Dr’s and had a colonoscopy than came back normal (no signs of Crohn’s or Colitis).
        • During the summer of 2014, while I had intense pressure in my head and severe allergies, an ENT Dr saw that I had a severely deviated septum (my septum was into the wall of the side of my nose).  This Dr performed a sinuplasty on my nose, which lessoned the pain and pressure on my head, but did not relieve most of my issues (I have had chronic sinusitis since I was a kid, but have not faced as much since the surgery).  
          • Note, Ceftin Sensitivity : Post-Surgery this Dr put me on Ceftin .  30 minutes after taking these pills my body would respond negatively.  I would have a serious burning sort of pain on my skin, my head would feel lots of pressure, my eyes felt like they were burning.  Of course, this all played into the other health issues I was having. Again, I found myself sleeping out in the car. After the weekend, I saw the Dr who put me on Penicillin.  I did fine after I was taken off the Ceftin.
        • I worked with an RN who helped me get my get back to a healthier place, who tried to treat me as if I had some sort of heavy metal toxity in my body.  This did not seem to help. I also did a genetic test to better understand how my body was methylating. My test showed, in particular, some issues with my COMT SNPs.   
    • Summer 2014 - A Few Days of Health – I was placed on a 10 day dose of the antibiotic Bactrin for a sinus infection.  Almost miraculously, it cleared all of my other issues by around day 6 or 7.  I was myself again! I could speak well, I could think well, I was not in severe pain.  I felt weak, but I felt like a weak healthy person. I was myself in a way that I could not remember the last time I was like that (long before 2011).  However, this was short lived. I ate a lot of frozen yogurt – too much – around the time of the end of the dose, and I am afraid that I fed whatever had been killed off.  Whether it was the yogurt or not, the symptoms returned. I knew that I would have a tough time getting in to see a Dr who would be willing to keep me on Bactrin.
    • Fall 2014 – I pursued a GI physician who was willing to try me on a 14 day dose of Bactrin to see in that would do the trick.  However, it did not. I did not feel any better.
    • December 2014/January 2015 – Lyme Screening - After having received a negative screening for Lyme early on in this process, a friend recommended that I get tested through Igenex laboratories.  The test came back all positive based upon Igenex standards and positive/positive/negative for CDC standards (albeit a band at equilibrium would have pushed it to positive on CDC standards as well).  My primary care physician, Dr Bassett, put me on a dose of doxycycline , but this did not help.  My primary physician told me to find an ID specialist for further treatment.
    • April 2015 –   Lyme Treatment - I saw an ID specialist in Florida.  He required “more objective evidence to treat me.”  He did a Lyme PCR screen (requiring a spinal tap).  This came back negative, but he was still willing to put me on an IV antibiotic.  All things being equal, I asked the Dr to put me on Penicillin rather than Rocephin, due to my negative response to Ceftin which is in the same class of antibiotics as Rocephin.  The Dr agreed. However, this treatment did not seem to have made a difference in my health.
    • 2015 – Dr Jemsek – I treated with Dr Jemsek in Washington DC, who prescribed a regimen of oral antibiotics and other treatments.  I did this for roughly 6 months with no improvement.
    • Late 2015 – Lyme-N – I tried an experimental treatment that I was told had many others who had Lyme disease recover.  It is called “Lyme-N” and it was an inhaled liquid treatment using a Nebulizer for a course of 30 days.  This treatment did not improve my health.
    • Dec 2015 - Mid 2016 (rough timeline) – Dr Jemsek – I went back to treatment via antibiotics.  I saw no improvement
    • Jan-Feb 2017 –   Hyperbaric Oxygen Therapy – I was treated for 15 or 20 treatments over the course of 3 or 4 weeks – I was taken to 2.0 atmospheres and was kept there for an hour (each visit took longer for the phase of getting to and down from 2.0 atmospheres).  I saw no improvement.
    • Mar-Apr 2017 – Mayo Clinic – I went to the Mayo Clinic in Jacksonville, FL.  I saw several physicians. Rheumatologist, GI Dr, Internist, Infectious Disease.  Rheumatologist diagnosed me with Central Sensitization Syndrome (the new term for Fibromyalgia they explained).  GI Dr did a pill cam study, found nothing. Infectious Disease Dr told me that testing for Lyme was bad and could not provide accurate diagnosis – she gave me the diagnosis that I did not have Lyme.  I went to a 2 day pain management seminar. I did not find a lot of usefulness with their training – I also received many mixed messages about my electrosensitivity issues. Some said they absolutely made sense within the Central Sensitization picture – others felt that it did not.

 

  • Sept 2018 – Lyme Treatment – IV Rocephin – I did IV rocephin for 2 months.  I did not see improvement and only felt much worse, so I discontinued. Chelation – EDTA – I then did 2 months of IV EDTA chelation.  This was the first time I saw a change in my level of pain by any treatment (except for pain management meds).  I have since been able to get more foods into my diet. While my pain level improved, I still had a tremendous amount of pain especially when my electrosensitivity issues flared up.  

 

 

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