Since my recent move to the Bay area symptoms of rheumatoid arthritis have continued to worsen so I’ve consulted with several new doctors, started a new food protocol, and even tried a few new medications. So far I haven’t noticed a difference by removing grains or dairy. Except that I still miss them greatly. My feet are full of fluid by the end of each day, and sleep has become something I dread, due to waking up from back pain. My patient, inner-brain tells me I need to keep waiting, while the frustrated, detective side of me wants to see results. If not full remission, I would at least like to see the smallest improvement over a two month period.
The first two weeks of taking LDN, I noticed massively painful spasms in my legs while sleeping. These were strong enough to wake me up several times a night. It was as if my whole body needed to stretch, involuntarily, past the point that my limbs were capable. Another side effect I found while on LDN was that I started to remember my dreams. I’ve never been one to remember my dreams upon waking. But the first few weeks on LDN, I would wake up remembering very weird, bizarre dreams like never before. Another symptom that became apparent was constipation. I cut the medication dose in half, but did not see any improvement. Eventually the muscle spasms did reside, and the strange dreams occurred less often, but the constipation remained.
At a follow-up appointment, my doctor suggested trying minocycline and looking into hyperbaric oxygen therapy. At that point, I felt I was doing everything possible to support my body with proper nutrition, but something else was still contributing to my state of disease. For the past month I took a low dose of Minocin, but symptoms continued downhill, while my diet was rock solid healthy. I eliminated as many environmental toxins from my daily life, and still, no progress. So what was going on?
Since my increase of inflammation didn’t feel like a Herxheimer reaction, but more gradual, I decided to keep moving ahead and pursue hyperbaric oxygen therapy, or HBOT. I met with an incredibly knowledgeable medical director, who seemed to think HBOT may help, but honestly advised me to take a second look at Lyme disease before beginning HBOT. I hadn’t been tested for Lyme or coinfections since 2011, so I found a trustworthy specialist nearby who took a look at my condition, and explained that babesia or borrelia could indeed still be a likely culprit. After going through months of herbal anti-microbials, the Salt/C Plus Protocol, parasite cleanses, and the Cowden Support Program, I wondered whether any of these had success. Even if only a little. So I agreed to get re-tested for infections.
And here is where it gets interesting. I’ve probably stated before that ever since my illness, I have not been a fan of antibiotics due to their destruction of gut terrain. I’ve always felt they have truly good uses, but debated whether chronic Lyme was one of them. Having met a new doctor in the Bay area recently changed my perspective. Maybe it was his acknowledgement that long-term antibiotics can have harmful side effects. It could be that he has a naturopathic background. Or maybe it’s that his patients are required to replace good bacteria with probiotics while taking antibiotics. It’s not an option! It could even be that he is so focused on supporting the body with good nutrition and supplements that provide healing to the intestinal tract while taking antibiotics. Regardless of my reasoning, I decided it was time to invest in an antibiotic protocol, only if it was done with proper support to avoid further damage to my digestive system, gut flora and internal organs. We set up a plan and will go from there. Cheers to another month of waiting for new test results and a new treatment plan!
If you currently take antibiotics for chronic Lyme or related infections, I would be interested to hear your story and what types of supportive measures you take to maintain proper immune support, digestion and detoxification.