Yes, it’s about time for a blog update, but where do I begin? After nearly 20 years of unexplained medical problems, in mid-July I finally crashed.
I’d been getting progressively sicker since a year ago, the summer of 2014. By the new year, 2015, financial problems led to lots of stress, then flares of SIBO. I became bed-bound, with loud tinnitus, insomnia, weight loss, low-grade fevers, and a total lack of appetite. I could no longer work at my job.
I also lost touch with plenty of friends during this time. I can’t say I blame them, as I had become so impaired I didn’t have much to offer. This only compounded the stress.
As you can see from my blog, I’ve tried quite a few treatment protocols over the years, and it seemed everything would work for a while, then I would lose ground and wind up feeling worse than ever. In recent months: iodine, lactoferrin, probiotics – all seemed to hold so much promise, they would initiate healing, then for some unknown reason, those benefits would slip away.
In early July I began waking with hot flashes and flushing, blood pressure spikes, rapid pulse – an intense resurgence of POTS symptoms. However, this time it got worse: my back and neck were both in terrible pain. I had electric zaps in my hands, a metallic taste in my mouth, a sore tongue, and strangely burning, aching feet. Soon after this, frequent spasms began in my lower back, and my groin became numb.
A week or so later, my hair began falling out, my vision became so blurry I could focus on nothing, my nose felt constantly stuffy yet there was no mucus, and I completely lost my sense of smell. My balance was way off, and I found myself stumbling around the house. Next, my skin took on a yellowish hue, and when I went for a dog walk, every step made me feel on the verge of a seizure. Fluorescent lighting had the same effect.
Worst of all, my mind was going. I had huge short term memory lapses, bewildering rages over small annoyances, waves of panic. When spoken to, it took me about 20 seconds to rewind what I’d just heard, otherwise I couldn’t register the meaning of the first few sentences. It was an obvious, accelerating, cognitive decline, and needless to say, pretty terrifying.
I would go visit my doctor, and he was puzzled by everything, but especially confused by the tachycardia. During this time my pulse was usually over 100 at rest. EKG results were normal. Blood work looked generally good.
But it was clear things were getting worse. My eyes looked dull and red, I’m 6 feet tall and now weighed 144 pounds. Yet with no diagnosis, there was no treatment plan, so I really had no idea where things were headed, and my doctor wanted to just continue monitoring my condition while I rested.
One day, due to my increasing back and neck pain, I was doing a search on PubMed for cervical stenosis, for degenerative spinal diseases. In the side bar I saw a study “Dual pathology as a result of spinal stenosis and vitamin B12 deficiency“, and that was it.
The next step was to explore the long list of vitamin B12 deficiency symptoms, realize I had nearly all of them, try taking some B12 (I started with 1 mg a day of this brand), and for the first few days I felt hugely better.
My vision had been blurry for a few days, and it suddenly sharpened up, colors became richer, and I noticed I could focus both near and far, better than in my teenage years. My breathing was incredibly clear (not a hint of asthma), and my gut motility was perfect. One night I checked my pulse and it was 60.
The pain and numbness in my lower back and groin, plus the pins and needles sensations in hands and feet began improving. My neck felt more stable. Also, the burning hot abdomen and neck I’d been experiencing for years suddenly switched to that cool-to-the-touch (very normal) skin temperature from decades ago, probably because my parasympathetic nervous system was finally working.
My mood continued to get better, including emotions both happy and sad. I’d notice waves of release and relaxation in my body, borne of sentimental thoughts. I began to focus outside myself, to check in on friends again. To be faced with rebuilding all of this is bitter sweet.
And progress is rarely linear. By day 6 I realized that the lozenge form of B12 I started with was probably fine for healthy people but contained mannitol and sorbitol, which created a lot of bloating, so I switched to these capsules without additives. I decided to crush each capsule first, by chewing it, then would park it under my tongue to aid absorption. Chances are my gut isn’t able to pull B12 from my food, although until I get further testing I won’t know for sure the root cause of my deficiency.
Where am I now? I got the methylmalonic acid test results back from my doctor. The reference range is 87 to 318, and my levels were 334, outside the upper limit of normal, indicating (pretty accurately, from what I’ve read) low B12 levels. MMA is neurotoxic, so I do want to see this number drop, and chances are it will come into balance as I continue supplementing B12.
Incidentally, vegetarians are far more likely to be B12 deficient, and since I am a paleo-dieter, who ought to be getting enough B12 from the animal protein in my diet, my doctor never thought to check. Based on my experience, it can happen to anyone, and especially if you have SIBO, or small intestinal bacterial overgrowth, where upper gut flora – migrate up from the colon – and consume our nutrients before we can.
I’m seeing connections to so many other problems that could be B12 deficiency-related. POTS, for example, this study links to adolescents, but maybe it applies to everyone, old and young. Crohn’s disease is a definite risk factor, but SIBO and ulcerative colitis are also related. Anyone who had anesthesia with nitrous oxide can become depleted of B12, and this describes me, also.
I wonder about B12 deficiency and the phenomenon of being “floxed” by fluoroquinolone antibiotics. Do these drugs deplete B12, and would this explain why some of us get really sick from taking them, and others don’t?
Since taking B12 I’ve noticed I can tolerate a lot more foods that used to provoke what felt like candida yeast overgrowth symptoms, and I do know my white count was mysteriously low in recent years. B12 is a critical component for immunity.
Am I feeling confident about the road ahead, and how best to approach healing? Not at all. I plan to see a neurologist to get a clearer picture of how to proceed, but scheduling this will take time. My primary care doctor has been balking at simple questions, such as “how much B12 should I take”, so I’m thinking it’s best to be conservative, and take no more than 1 mg (1,000 mcg) per day. I also know the MTHFR gene mutation could play a role, and I may need to supplement methylfolate, but when I’ve tried taking just 800 mcg I feel worse, so for now that’s on my avoid list.
The most frustrating thing of all is what’s improved and what’s stayed the same. My back and neck pain are getting better. I am seeing sleep improvements, my mood is generally upbeat, asthma is totally gone, my mind is getting sharper (although my memory is not what it was in June).
Unfortunately, while I did experience a burst of energy around days 4 through 6, I crashed shortly thereafter and am feeling heavy fatigue now. I am back to spending most hours of the day in bed, and my ability to focus is greatly diminished. Is this typical for recovery?
I’ve struggled to find information on how most of us respond to supplementation of B12. Not everyone improves, especially when diagnosed late, but of those who do, they often say “give it 2 or 3 months” and I’m now at three weeks.
My hope is that others out there will read this, and some of you will have your own recovery stories. With the understanding that we’re all different, what was your own path to healing, and what steps did you take to figure this out? Maybe you’re someone in my own situation, and would like to compare notes. Please share whatever you can with us in the comments section.