Second verse, same as the first. Not much has changed in month 14. In fact, I still have the same two symptoms on my list as I’ve had since month 12:
- MAJOR muscle issues including spasm, knots and pain
- Ringing in ears
You read that right. The change from Amoxicillin and Zithromax to Biaxin and Plaquenil did nothing to help the muscles that came on so suddenly in May/June. The muscle pain is still debilitating. It travels around and changes intensity each day. But it’s always there. At this point, it is very difficult for me to spend any time at all sitting. My butt, hips, and low back just SCREAM in agony even minutes into being seated. 99% of my time is spent laying down or standing. I feel the best when I’m up and walking around. Of course given that I have a desk job and also that I’m a human who sometimes gets tired, constant movement isn’t an option. So I’m frequently in pretty excruciating pain.
I’m working with a few types of body workers, most notably a couple of chiropractors who do deep muscle work. They are releasing my muscles every few weeks, which provides relief for a few days. And they have me doing exercises at home to stretch my hips and strengthen my glutes, but so far nothing is helping.
My Lyme doctor insists this is a problem with toxins. As such, she has me starting Cholestyramine this month which is a toxin binder. Taken away from all my meds, this is supposed to remove any toxins that my body is having a hard time flushing on its own. Bob Miller, my genetics doc, is also starting to open up my methylation pathways with a product called Methylation Assist Liquescence. Once I’m on that for a few weeks, I’ll started methylated folate, which HOPEFULLY will help this MTHFR-positive Lymie more readily get rid of some of this junk in my system.
If it’s not a detox issue, I think it may be an imbalance or nutritional deficiency of some other kind. Electrolyte imbalances, notably, are associated with muscle pain and cramping. And long term antibiotic use can indeed impact electrolytes. I learned this when I did an internet search to find out why my legs shake SO violently after stretching (honestly it’s a little embarrassing). I have long been supplementing with Nuun tablets, but will be adding in an oral pill supplement as well.
It could also be that I have some viruses causing trouble for me. After all, Lyme and zoster viruses (like herpes viruses or Epstein Barr Virus) especially tend to egg each other on. The one I most heavily suspect is EBV. I had a very intense case of mono as a teen, and I was exposed to my nephew’s mono the week before I fell very ill with a vestibular disorder. I’d been blaming the whole thing on Lyme, but it may very well have been a combination. EBV is known for causing facial pain, hearing loss, ringing in ears and middle ear balance disorders like I suffered in fall of 2014. It’s also known for causing tight, aching and spastic muscles, which I had then AND have again now. Anyway. Ramping up viral treatment can’t hurt. So on my own, I’m adding L-Lysine and multi-mineral supplements too.
In total, that means the additions for month 15 are:
- Methylation Assist Liquescence then Methylated Folate
- Additional electrolytes
- Multi-mineral w/ zinc
Fingers crossed something starts to work. Being in chronic pain that I don’t seem to have any control over is VERY demoralizing. It’s hard for me to keep good moods and kindness in my heart. And I feel very tired of this fight. I can’t imagine how people endure this for years at a time. I pray I won’t have to.
Some of the things that I’m doing to help the muscle pain include:
- Hip flexor stretches (couch stretch)
- Hamstring stretches
- Buttock stretches
- Buttock strengthening exercises (no relief yet, but my chiro insists I keep going)
- Foam rolling my buttocks and erector spinases with an Orb ball
- TENs unit and lacrosse ball on my traps or mid back if needed (but most pain has been in hips and butt this month)
Wish me luck as I head into month 15. If one of these changes cracks the nut, I’ll be on the road to being symptom free. And honestly, I really need a break from this acute suffering. I do.
Wishing everyone out there lots of health and healing!
How am I treating? It takes whole-body healing. Here are my areas of focus:
- Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol: antibiotics, biofilm busters, supplements and sometimes herbals. To treat Lyme and bartonella, my best meds have been doxy, cefdinir and bactrim.
- In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
- I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
- I follow a strict no dairy/egg/gluten/sugar/alcohol diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, thai food and the occasional vegan / gluten free pizza when I’m dining out with friends. I eat lots of veggies and drink a lot of lemon water to stay alkaline.
- I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a romantic partnership that wasn’t supporting me or my healing, and making a strong investment in a positive social network (online and off).