Treating My Trypanosomas: A Timeline
I am having a rough week. I am having a lot of back pain I don't normally have, had a LOT of trouble sleeping last night -- probably NOT due to the pain per se -- and was cracking my back a lot, something I haven't done in years.
I sometimes have terrible pain and sleep it off. I sometimes have insomnia without being particularly miserable. Most likely, my pain and my insomnia have a common root cause: bad die-off deep in my system.
This is most likely trypanosoma die-off in my spine, hip joints and some scar tissue I have in my lower back from a fall I took on an icy bridge in December 2017. This is most likely end-stage die-off. Most likely, I am in the final stage of clearing this infection.
This infection favors cartilage, as found in joints, and the hip joints are large joints deep in my bloated belly and yadda. I have had a LOT of other stuff PRECEDE this to get to this point.
Trypanosomas typically takes about twenty to thirty years to kill someone. I was at death's door in about eight or nine because I also have a genetic disorder, caught it via sexual transmission from my husband (who apparently brought it back from a tour of duty in Saudi Arabia) and was being routinely reinfected by him everytime we had sex.
As explained elsewhere on this site, because of my genetic disorder, anytime he infected me or reinfected me with something, it was WORSE because he is healthier, so the germs coming out of his system are stronger than what grows in my defective body.
Some (most?) of this is not NEW info per se. I am just trying to PUT IT IN ORDER.
I SEEM to FINALLY be nearly clear of this infection. It's been nearly 22 years since I concluded I had trypanosomas.
This is a MARATHON, not a sprint, as they say -- though if you ONLY have trypanosomas and do NOT also have atypical cystic fibrosis AND hexavalent chromium poisoning, your healing journey may be substantially shorter than mine has been.
See also: Managing Mood.
I sometimes have terrible pain and sleep it off. I sometimes have insomnia without being particularly miserable. Most likely, my pain and my insomnia have a common root cause: bad die-off deep in my system.
This is most likely trypanosoma die-off in my spine, hip joints and some scar tissue I have in my lower back from a fall I took on an icy bridge in December 2017. This is most likely end-stage die-off. Most likely, I am in the final stage of clearing this infection.
This infection favors cartilage, as found in joints, and the hip joints are large joints deep in my bloated belly and yadda. I have had a LOT of other stuff PRECEDE this to get to this point.
Trypanosomas typically takes about twenty to thirty years to kill someone. I was at death's door in about eight or nine because I also have a genetic disorder, caught it via sexual transmission from my husband (who apparently brought it back from a tour of duty in Saudi Arabia) and was being routinely reinfected by him everytime we had sex.
As explained elsewhere on this site, because of my genetic disorder, anytime he infected me or reinfected me with something, it was WORSE because he is healthier, so the germs coming out of his system are stronger than what grows in my defective body.
Because of my compromised immune system, anytime I gave a cold to my husband by kissing him and he gave it back to me a few days later, I was much sicker the second time around. It bred in his system, grew stronger and came back to me more virulent than the first round.There is a bullet list of stuff that helps with Killing Trypanosoma and there are more than a dozen posts currently labeled Trypanosoma. THIS post is an attempt to lay out an ORDER of EVENTS to help guide people in choosing treatment options in a useful ORDER depending on where they are in their healing journey.
Some (most?) of this is not NEW info per se. I am just trying to PUT IT IN ORDER.
Prologue
Quick and dirty background info covering the period from the time I was first infected to the time I concluded I had trypanasoma:- I think my husband returned from Saudi the summer I turned 28, infected with trypanosomas.
- I got much sicker while living in the High Desert not far from where the events depicted in the movie Erin Brockavich occured. I most likely picked up hexavalent chromium poisoning in my time there.
- I visited family right around the time I turned 35 and there was a history of visiting my family of origin and requiring dental work afterwards. I don't know why, but a best guess is they carry some infection that impacts my teeth.
- I returned to California and that fall, in probably October, I again needed emergency dental work. As happened a LOT while I was in the High Desert getting multiple teeth surgically removed, they did not take me seriously and did not give me antibiotics. I was soon in the ER in need of antibiotics.
- We moved in November. I know it was November because they packed my houshold goods on my sixteenth wedding anniversary. I was in the midst of ten weeks of chronic sinusitis that was NOT GETTING BETTER no matter what I did. Every time I came off antibiotics, I was back in the ER within 48 hours.
- We moved from the High Desert, about 3000 feet above sea level, to a town about ten or twenty feet above sea level right before ten weeks of chronic sinusitis turned to pneumonia, nearly killing me and leaving me bedridden for about 3.5 months. The move to a lower elevation likely saved my life because people who live at high altitude develop better lung capacity, etc, and when such people go down in elevation, they get more out of the oxygen levels at "normal" elevations and see a temporary gain in energy levels, etc.
- I was diagnosed with atypical CF in May 2001 just before my 36th birthday and a month after using home remedies to break up the the phlegm and put an end to my bedridden stint.
- That summer, armed with a real medical diagnosis and no longer being treated like a loon and hypochondriac trying to cadge antibiotics for funsies, I AGAIN went through something like ten weeks of antibiotic use -- and AGAIN was back in the ER within 48 hours every time I ran out of them -- that made ZERO DIFFERENCE in my condition, even though I was NOW being given The Good Stuff with side effects like "small chance of dying from this drug."
Treating My Trypanosomas
- When I wasn't in the ER getting more drugs, I was online looking up my symptoms, trying desperately to find some infectious disease that fit my symptoms, including the joint issues I was having. Trypanosomas was the ONLY thing that fit. They favor cartilage.
- In August, I happened to speak with a friend who was a physician and ran my NEW hypothesis past him that I had a parasitic infection that my husband brought back from Saudi and transmitted to me sexually. To my surprise, my friend said he had minored in parasitology -- it was NOT his area of medical practice -- and he said "Based on everything you've told me this year, that actually makes sense."
- On the strength of that conversation with an actual physician who had given me more than TEN MINUTES of his time that year, I informed my husband later that same day that he was NEVER touching me again without a condom.
- Roughly two weeks later in September, I had a doctor's appointment and asked for Zithromax, my drug of choice at that time. It has a long half life and I spent maybe two months or so on Zithromax about HALF the time -- two weeks out of every four weeks -- which means I was MOSTLY covered because it stays in your system a while (ten days past your last dose, if I recall correctly).
- Between condoms and Zithromax, my condition stabilized fairly PROMPTLY and I gradually began GETTING BETTER for the first time in YEARS.
- Maybe in November or December, I ended up out of Zithromax and back in the ER at a large teaching hospital. The ER doctor was a resident and he kept trying to call a "real" doctor to get feedback on his desire to give me Levaquin, a VERY strong antibiotic commonly given to people with classical CF. He and I had good rapport and he couldn't get a call back and I finally told him "My diagnosis is cutting edge. NO ONE on the planet has twenty years experience treating it. Use your best judgement." and he gave me the Levaquin.
- So...I THINK I then didn't need antibiotics for like two or three months, which was a record for me at that time. And when I could feel myself getting worse in maybe February or something, not wanting to deal with asshole doctors treating me like a hypochondriac, I ORDERED more Levaquin from Mexico without a prescription. And that finally broke the cycle of constant antibiotic use.
- That summer, I attended GIS school. I went home during the break in the middle and told a doctor "I took out a student loan. I can't drop out. The air has turned yellow, probably from sulfur, and I'm reacting anaphylactically when I leave the building." and he asked me what drugs I WANTED and I rattled off maybe four or five drugs I LIKED and he gave me ALL OF THEM plus a few extras he thought up. I was on something like eight drugs for the remainder of GIS school, including Zithromax, 500mg Motrin (aka ibuprofen), big giant horse pills of Aleve and a steroid (and I learned later you aren't supposed to take ibuprofen and Aleve together because they both stress the liver, so the combo can KILL YOU).
- GIS school ended and thus began the start of 22 months of drug withdrawal from the many drugs I was on during school. I was a useless limp piece of lettuce for the next year but it likely saved my life and put me on the road to recovery.
- The following spring, I FINALLY tapered off the steroids successfully and either then or the NEXT year I spent three or four months on a yeast cleanse diet to begin undoing the damage to my body from all the drugs I had been on, something I NEVER hear doctors talk about: How to REPAIR what the TREATMENT did to you. (See also: Co-Q-10 and Melatonin)
- During this time, I increasingly used antibiotic alternatives, like poultice, to keep me out of the ER and off drugs, began throwing stuff out like crazy, initiated a divorce and the husband eventually moved out.
- I moved back home, eventually got a corporate job, continued gradually getting better while living in a spartan home with little furniture and few possessions.
- I quit my corporate job at a point where I felt like I couldn't get any better while working there and went and slept in a tent for nearly six years while continuing to do non-drug remedies and gradually getting better. Early in this stint of homelessness, I crossed the continental US on foot and catching rides and was above 6000 or 7000 feet above sea level on three separate occasions and THIS made a huge difference and was followed by several weeks of sleeping 18 hours a day, intense fever and then six months of menstrual periods from hell.
Tips and Takeaways
- If you are chronically ill and no amount of drug use fixes it, odds are good you are being exposed or re-exposed to SOMETHING that helps keep you ill. Figure out what it is and find a means to fix it or protect yourself. (See: TMI and NSFW; Three Linear Feet of Papers.)
- If you know you have trypanosomas or have reason to believe you have it, starting with Zithromax or Levaquin may help jumpstart your healing journey and help stabilize you.
- You ALSO need to throw stuff out because trypanosomas gets into your STUFF, especially SOFT goods like bedding, carpets, books, etc.
I SEEM to FINALLY be nearly clear of this infection. It's been nearly 22 years since I concluded I had trypanosomas.
This is a MARATHON, not a sprint, as they say -- though if you ONLY have trypanosomas and do NOT also have atypical cystic fibrosis AND hexavalent chromium poisoning, your healing journey may be substantially shorter than mine has been.
Footnote
Because I have linked this page in the sidebar as the place to start if you have trypanosomas, I feel it is important to mention here that killing trypanosomas can at times cause a deep sense of hopelessness and depression. Cinnamon is the only thing I have found that helps with this, but do note that cinnamon is a blood thinner, so you can overdo it.See also: Managing Mood.
