Lyme Disease Research Wish List

Tuesday, August 23, 2011

Last night was pretty horrible. The worst pain was coming out of the left side of my lower spine (L3-L5 area) and shooting a burning sensation down my leg. It was all too familiar.

It got me to thinking about the EMG (or all 4 of them because each new neurologist had to redo the damn test) which showed that I had polyradiculopathy on both sides of my spine in the lumbar region. The test itself was extremely painful, as in shouting and tears and muscle spasms up and down my spine. All it showed was that there was a problem, but not what caused the problem. That’s why I was seeing these neurologists, to find out what was causing the problem, not to get an objective assessment that there was one.

I’ve studied some chemistry and read lots about biology and medicine. I sometimes have ideas of what might make interesting research, recognizing that some of the ideas might be impossible to implement. The top on my list is to change how we test for Lyme Disease.

Right now, the test for infection is based on finding human produced antibodies to the borrelia bacteria. As someone whose immune system has gone berserk, I’ve had positive-ish and negative-ish results alternately for several of the tick borne illnesses. So I know from personal experience that antibody tests are notoriously fallible for Lyme Disease.

The alternate test is to try to find the actual bacteria in a high enough quantity to do a PCR analysis and hopefully find evidence of it’s DNA. From what I understand, this has a very high false negative rate because it’s hard to figure out where the bacterial colonies will be. And if you do it with spinal fluid (or blood), you have to hope that enough of it is free floating to get results.

What I would like to ask a research team to investigate is the composition of the neurotoxins that borrelia produce. Then, the goal would be to test for the neurotoxins, either in spinal fluid or blood. It seems like the concentration of neurotoxins might be pretty high given how intense my nerve pain is.

My other idea is to figure out what borrelia eat. I imagine it’s sugar, which might make this hard, but I wonder if it’s possible to generate some kind of dyed compound that is viewable on a CT or MRI scan that shows the location of the borrelia colonies if there are any. I think about this because I read about biofilms and I’m convinced I have a colony living around my lower spine.

I have other ideas, but those were the ones that kept me hoping and wishing last night.


  • Babesia, ilium, 1 minute each side; knees/elbows, 1 minute; liver, 5 minutes; chest, 5 minutes
  • Candida, abdomen, 10 minutes; chest, 2 minutes


  • skin brushing
  • Welchol (2 doses of 1 pill at a time)
  • juiced greens
  • BioMat (30 minutes level 3, 1 hour on negative ions only–because I was too hot to get more heated)


Last night was a really bad Lyme Herx. I was in pain when I was blogging, but it just got worse and worse. I had sharp, hot, shooting pains coming out of my spine down my left leg. The pain was so bad that I could barely put weight on it to get off the couch to go to bed. The muscles in the front of my legs hurt enough to feel weak. My psoas muscle on the left side spasmed. I had sharp, hot fleeting pains in my rib cage, shooting out from my spine. It was bad. I hurt so much I had tears in my eyes.

All I could think was that autumn is going to be horrendous. I might be using a cane again. I sure could have used it last night (but I’d have to walk down my hall to get it and that seemed like unnecessary steps). I’m trying to find my inner Klingon warrior or to channel Malcolm Reynolds’ scorning of torture in the episode “War Stories” of Firefly. I know I’m going to need it to face the pain that’s headed my way.

It took a long time to fall asleep. Besides the sharp pains, I had a painful sensation on the left side of my body from head to toe and I just couldn’t get comfortable. I had a headache on the top of my head, similar to the beginning of a migraine type headache. I also felt pretty weepy. I called a friend and requested bedtime stories to calm my mind before sleep.

I slept until 5am and then woke up with a medium night sweat. I changed my shirt, although it was only borderline necessary. The nice thing was that I was down to the usual hand and foot pain, not the intense nerve pain. Same thing when I woke up again at 8am.

Unfortunately, the nerve pain came back, and the headache with light sensitivity returned to a lesser extent. I was pretty low on energy all day because my pain level was so high. (Oh yeah, and there was an earthquake, which I felt, and which reminded me of when I lived in Los Angeles.) I’m pretty sure the Welchol is mitigating the pain. Although a higher dose might work better, I’m not ready to take more just yet.

In addition to the pain, my abdomen is pretty swollen. My stools were loose and copious again today. And I’ve had a terrible gas attack all night (loud and stinky). I’ve had floaters in my vision all day. And I’m still dealing with urinary hesitation, but less often than before (as in not every time I use the toilet). The glands in my lower back are swollen and tender.

Tonight I’m still having a lot of pain in my legs. My arms are tired and stiff despite the lack of use today. I have a feeling I’ll need another day of rest.



  1. Interesting ideas. Have you come across researchers in this field that might want to follow up? Is borrelia easily grown in a lab? Can you just streak a plate and grow a colony? If I’ve understood what I’ve read in your blog, the die off of the bacteria is what releases the neurotoxins that cause the Herx reactions, so you would have a pretty good idea when to test for it, no?

    Hope you sleep well tonight.

    • I haven’t reached out to any researchers yet, but I only started considering that idea as I was writing. Borrelia is very hard to culture outside of a host organism.

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