Since my last post here, many months ago, I got short term improvement from B-12 shots, but my serum levels were sky high and my doctor suggested I stop the injections. After an initial bounce I crashed, and began to have widespread inflammatory and neuroinflammatory issues. He theorized this may have been triggered by saturation with B-12. My serum B-6 was also quite high, despite never supplementing it.
A methylmalonic acid test was elevated, so after being off it for a few months, I continued to take 2,500 mcg oral B-12 and requested referral to a specialist who could check for genetic issues with methylation, but as my neck and back became more inflamed, and cognitive problems worsened, I was instead sent to a neurologist, who did a full workup: brain MRI, a soft-tissue MRA, hearing tests due to increasing tinnitus, a carotid artery test, and an EEG.
Other than a few white matter brain lesions (no change since a 2008 MRI) which may be congenital, these new tests were inconclusive. While I do have some degenerative changes to my cervical spine, autonomic dysfunction was the neurologist’s primary diagnosis. At this point, my symptoms were growing – you can read a list of them here.
A few weeks later, I saw a neurosurgeon and explained how pressing in various places on my neck, the base of my skull, and near the mastoid process behind my right ear, could often improve my autonomic issues. He pointed out a Chiari Malformation on my brain MRI but said “we don’t operate to fix dysautonomia”, which was yet another blind alley. I’ve yet to see an autonomic specialist for non-surgical treatment of this.
Flushing, at first just a red glow on my face, then eventually from near head to toe, has also been happening for about 14 months. My doctor tested for Carcinoid, and so far results don’t indicate it, which is a relief. Instead this may be related to a mast cell disorder. I’ve learned certain kinds of flushing, even the rosacea which I have, can be caused by neurological problems.
What’s the root cause? It’s likely multifactoral, but nerve damage from repeated doses of fluoroquinolone antibiotics over the years, like Cipro and Levaquin, likely plays a huge role. It was after a final dose of Levaquin in 2008 that I developed symptoms of hyperadrenergic POTS – primarily a vagus nerve malfunction – which triggers heat intolerance, trouble handling physical and emotional stress, and orthostatic intolerance.
However, these antibiotics did more than nerve damage, they wrecked my gut flora, and POTS is now thought to be autoimmune.
The best I’ve felt in recent years was while I hosted hookworm (small therapeutic doses) and did fecal transplants. Both of these protocols may boost vagus nerve tone, by lowering inflammation in the gut and boosting signaling from the enteric nervous system back to the brain, the “rest and digest” parasympathetic, which works opposite of “fight or flight” sympathetic.
My doctor suggested I try probiotics and hookworm again because he noted they seemed to help me, so I’ve been taking VSL#3 daily, plus Miyarisan tablets, which contain c. butyricum, and 15 weeks ago I did a dose of 50 necator americanus. While the initial side effects of helminthic therapy were rough, with spikes noted in blood work for eosinophils, I’m now feeling more benefits than allergic response, including no more asthma, healthier sinuses, and a big improvement of ulcerative colitis.
Concurrent with this, I remembered how good I felt one Summer when sunbathing for 15 minutes a day. I’ve had chronically low vitamin D and low testosterone. Sun exposure boosts both. I started laying out at noon each day a few months ago and it has been a great mood lifter. I also find I have better sleep quality when I get my daily 15 minutes. To discuss light therapy, its effect on mood, hormonal production and balancing sleep/wake cycles, join us here on Facebook.
I wanted to cover all the bases, and since sinusitis has been an ongoing problem for me, too, with green mucus indicative of staph colonization, I’ve begun daily rinses, which you can read about here. Two weeks later the mucus is thinning and has no color. I credit both the hookworm treatment and rinses to this recovery. Reducing sinus inflammation has improved anxiety, and my sleep is deeper. There’s a theory sinus inflammation from gram negative sinus flora can generate lipopolysaccharide (a potent inflammatory molecule) which in turn triggers brain inflammation.
Waking in the night gasping for air has been a problem during these last few months, and while I was scheduled for a sleep study I noticed a sudden improvement after a few days of sunbathing. There’s a vitamin D and sleep apnea correlation, mainly with regard to metabolic activity, so it’s possible Sun is good medicine for it. While I still have some brain fog, my mind feels sharper while sunbathing and I’m no longer waking at night. Since obstruction of upper airways can also contribute to apnea, sinus rinses are likely helping, too.
I’ve also been to see an oral surgeon after my dentist thought I could have dental infections contributing to fatigue and cognitive problems, but an oral surgeon did a panoramic x ray and said it looked fine. He noted sinus inflammation and recommended I keep doing my daily rinses.
I feel fortunate testing was able to rule out a lot, but if you see a pattern here, it’s that each protocol has helped a little – yet nothing has totally solved – what first appeared to be symptoms of low B-12. Now, just in the last month, I’m pretty sure I’ve figured out a key factor, and it may be a different deficiency, with very similar presentation.