I'm a 33 year old male living in Canada with Post-Treatment Lyme Symptoms. I can't compare myself to most of you battling your way through chronic Lyme, but I thought I'd share my story, as it seems like I may be the only one here in Ottawa with these symptoms trying to navigate the Canadian health care system. Maybe I can help someone, and maybe they can help me...
I was bitten in May of 2013, didn't see the tick, but felt like I had either Meningitis or Lyme based on my google search. (At the time, I was hoping it was meningitis, that way I could just die and get the pain over with). I was trying to build a deck at the time, and can distinctly remember staring at the decking, and not being able to logically reason my way around putting a portion of the deck together. Shortly after, I had a headache, severe neck pain, low back pain, and basically was bedridden with severe pain throughout my spinal chord. After three days, my doctor told me I had a viral infection like the flu, and should take acetaminophen and ibuprofen in their max doses, and rotate between the two to manage the pain. The following day (4 days in) I found the rash and immediately returned and was prescribed 21 days of doxy, 200mg twice daily. The bacteria dying in my spinal chord left me completely debilitated for 48 hours. I was in bed just hoping to be unconscious. Closing my eyes led to dizzyness,
opening my eyes led to massive migraine like symptoms. On the 3rd day (7 days afterwards) the clouds lifted, the sun came out, and I felt fine. I took the rest of the prescript
ion with no problems.
Fast forward 6 months, fall of 2013, I started to develop low back pain. Felt stiff, a bit of a burning sensation, and during the following years, the occasional recurring 'injury' which would cause aching, burning, and much more severe pain. This would come and go, but the minor aches and stiffness never stopped. Now I manage by having lumbar support wherever I sit, and I move about
quite a bit to stretch and relieve the burning. I'm never really comfortable unless lying in bed.
The standard Canadian blood test came back positive during that first week. 6 months later my doctor did a 2nd test, and big surprise, it's still positive (though the antibodies never leave, so it's always positive, so I was confused about
why to run the test twice, like why bother?).
Bone scans and an MRI one year later (2014) came back negative for anything, so no answers there either.
Basically I've gone through all the testing that Canada can provide, and only the one faulty blood test comes back 'positive' for lyme but it's not really a help because I already knew that. All the bone scans, MRI's and other testing comes back negative, so I should be a healthy person, right? As a 33 year old, I'm concerned that this will get worse and worse. What's going to happen in my 60's?
My hypothesis, and my physiotherapist's hypothesis is that my low back joints cannot handle 'shear' stress. This isn't twisting or bending, but shear. To put the joints into shear means to sit in a chair with no lumbar support, or to lay on a super-soft mattress (or super-hard mattress where the lumbar doesn't touch the ground), or in yoga to be in a suspended bridge position. Bending and twisting feel good, but the shear leads to burning pain and when I don't stop the shear within a few moments, the pain stays for several days. I think the bacteria ate away at the joints, making them more susceptible to slide past each other in shear, causing inflammation.
Now it's 2018, and I manage by going to an excellent physiotherapist twice a month. She manipulates my SI joints, and the lower discs of my back, using a crazy technique of manipulating my legs and hips by laying me on my side, jamming my knee into her abdomen, and reaching around to push with her hands on my hips while compressing and moving my legs. Its hard work for her, but in pays off because I'm pain free for at least a week each time. Stretching at home and at regular yoga also helps, but not as much as what she can do for me.
I also recently received a prescript
ion for cannabidol (CBD) derived from cannabis. It doesn't get you high so I use it instead of ibuprofen, and saves my stomach from upset. It's not 100% effective, but works quite a bit (like 80%). I would recommend you try it, if you live in an area with legalized cannabis. Just buy from a reputable source and don't use the THC if you want to avoid getting high.
I use Tweed /www.tweedmainstreet.com/
. They're wonderful for managing my prescript
ion and for ease of buying cannabis oil (Lot #3).
I'd like to know if others are experiencing what I'm experiencing, and if you have any other tips and tricks for managing this kind of back pain?
Thanks for listening!