All the Other Crazy Weird Symptoms

I have written about my list of Lyme disease symptoms. Today, I would like to cover some of the other crazy weird symptoms I experienced. So often, as Lyme warriors, we get caught up in the big, obvious symptoms like exhaustion and dizziness. And understandably so, but it was all the one-off symptoms that were especially scary and unsettling. It’s all the crazy weird symptoms that made me feel as though I had completely lost control of my body. I will list them in chronological order, as they appeared, after starting my treatment.

My black tongue

When I first started my blog, a little over a year ago, I devoted an entire post to my black tongue. Needless to say, it really freaked me out. One morning I woke up and it was just there, staring back at me in the mirror. I have researched this a little but it’s hard to find information. When I talked to my doctor about this she assured me I wasn’t dying, as I felt certain I was (why else would your tongue turn black!?!) Her explanation was that it’s a sign of bacterial die-off. She recommended I slacken on my doxycyline and step up my detox protocols. Once I did that, it cleared up within a few days, much to my relief.

Bartonella toes and fingers

This was another of those crazy weird symptoms that nagged at my sensibilities for weeks. It also took much longer to clear up. This rash started around the edges of my toenails as little red dots. It didn’t particularly hurt at first but as it spread it got more painful. Oddly, it appeared only on my toes and hands. It was an odd sensation because my toes and fingers were freezing to the touch but the rash felt like fire. If they were exposed to the sun or hot water the pain was unbearable. Imagine smearing way more Icy-Hot on your toes then would ever be appropriate. That will give you an idea of the discomfort.

Losing hair

As far as vanity goes this was my most disturbing weird symptom. I could handle the empty eyes, the bumpy rash covering my face, even my greasy hair, but losing my hair was the stuff of nightmares. Like the one where you are giving a lecture in front of your high school class and look down to discover that you’re naked. That’s how losing my hair felt to me.  My hair has always been my favorite attribute and the thought of going bald kept me awake at night. Showering was already an ordeal for my weak body. The added stress of pulling wads of hair out of my head… I hated showering!!

Bumps on my face and chest

I have no explanation for this one. This rash wasn’t painful nor did it itch. It was just annoying in that I was concerned about its cause. Eventually I found a Grapefruit Seed Extract lotion by Nutribiotic that seemed to clear it up almost overnight. I still use this lotion today. I love the scent, though my dog hates it.

Effects of the moon on symptoms

I see this one come up more frequently than I would have guessed on Lyme disease support groups. I definitely noticed a difference in my symptoms according to phases of the moon. For me, I seemed to feel worse during the new moon whereas most comments I see tend to be the opposite. Maybe I’m just weird that way. I won’t begin to try and explain this one but I can tell you you’re not alone if you’re experiencing its effects on your symptoms. This article does give some interesting insight into possible reasons this occurs in so many Lyme warriors.

Foods causing a herx reaction

My experience with this was fairly minimal but it did occur. Of course, I have considered that I was just so sick in general that I didn’t notice if wheat bothered me the one morning a week that I cheated on my paleo diet. The main food that, for certain, bothered me was sugar. I am not a big sugar eater, so this wasn’t much of a problem for me. However, every once in a while I might be tempted to have a bite of my husbands dessert after dinner. When I did indulge I always regretted it. Almost immediately I would notice a significant flare in my symptoms, namely my tremor and dizziness. I’d say a good rule of thumb is, if you eat something and you get an adverse reaction, don’t eat it.

Hormone changes

Hormonal changes are an excellent example of why finding a Lyme literate doctor who will treat your whole body is so crucial. My doctor determined almost immediately that Lyme disease had affected my adrenals. My adrenals were so low they indicated borderline Addison’s disease. She started me right away on adrenal meds. It was also determined that my body wasn’t producing enough progesterone or testosterone. I saw a question on a Facebook Lyme disease support page recently regarding vaginal dryness. I would certainly consider this as a side effect (or at least a byproduct) of Lyme disease and something to bring up with your LLMD. You may also need some help balancing out your Lyme affected hormones. It’s worth noting that I no longer take progesterone or testosterone. It was a temporary shove my body needed to even the scales.

Discomfort under my left ribs

I have no explanation for this one and I have been surprised to see this symptom come up in support group forums. I figured this was something only I experienced, but thus goes the mysterious ways of Lyme disease. As I recall, it often started under my left breast then the discomfort slid down under my lower left ribs. It wasn’t really painful, just uncomfortable like I had gas. It felt like a tiny fist lodged under my rib, pushing against it with a firm pressure. I spent months with a heating pad wrapped around my torso which offered some relief. As I said, I have no idea what this was but if you’re experiencing it too, at least you know you’re not alone. Eventually, it just went away after months of nagging at me.

Eye floaties

Eye floaties are another of those crazy weird symptoms that I had no idea were caused by Lyme disease. I actually started experiencing eye floaties long before I was diagnosed. This is one of the symptoms that has held on even as I enjoy remission.

Seriously painful menstrual cycles

My menstrual cycles were truly unbearable. I devote pages of description in my book, which I won’t go into here. Suffice it to say, my painful periods actually cost me jobs. I experienced pain so bad I vomited. My husband was terrified of the pain he watched me lamaze-breathe my way through. On more than one occasion he was ready to whisk me off to the hospital, positive that something was horribly wrong. It turns out he was right. Lyme bacteria had wreaked havoc on my reproductive system. I’m actually convinced one of the ticks that bit me was attached on my lower torso somewhere.

Difficulty swallowing

If you have experienced difficulty swallowing you know how frustrating it can be. This is a symptom I also lived with long before I was diagnosed. I had a bout so bad in my mid-twenties I actually lost weight because I was afraid to eat. My family can attest that I am a very slow eater. This got even worse when I felt like I couldn’t swallow without choking. It would take me so long to eat a meal, eventually I would just give up trying and opt for going hungry.

Lyme rage

I have devoted an entire post to this crazy symptom but it’s worth mentioning it here. We often neglect the emotional/psychological effects of Lyme disease. They should not be overlooked. Chances are, you may not even notice that you’re experiencing Lyme rage. But I bet those around you have noticed. Lyme rage is described as acute episodes of extremely intense rage with an abrupt onset and minimal cognitive control. Once again, if you’re dealing with Lyme rage, know that you aren’t alone and it too will go away.

You are not alone in this battle

I share all of these things with you because I felt so alone when I battled Lyme disease. All of these crazy weird symptoms that I couldn’t find on the google machine drove me nuts. As I said in my opening paragraph, the big scary symptoms of Lyme disease get lots of attention, but these smaller ones get lost in the shuffle. These smaller bizarre symptoms can be just as scary as the well-known symptoms that we mostly have in common.

Do  you have any crazy weird symptoms that keep you up at night? What are they? I”m certain that I have forgotten some of my own. Reach out and share because you’re probably not alone. Some of them may not have a known explanation yet, but some of them might. Understanding what’s happening to your body is key to healing, and maintaining your sanity.