The Nitty Gritty: My Symptoms

I like to read about people who are giving admirable responses to their difficult experiences. But what takes this reading to the next level for me is an account of nitty gritty, day-to-day overcoming of struggles. Admittedly, my blog is too general. It's okay, but I'd like to start zooming in and answering detailed questions I receive. 

I noticed "My Backstory" post is the most-read post I have written so far. I'm surprised because it is sooo long, but also not surprised because people have wondered what my deal is and how I got this way. However, that post does not really list the day-to-day symptoms I feel. 

Talking about my symptoms is not therapeutic or enjoyable to me, but for you, for my memory, and for my posterity, I need to talk about it. I'm going to write about my symptoms as best I can for you in my posts. 

I have had this set of symptoms for many years. I hardly remember what normal feels like. I thought all of these symptoms were just "me," especially the parts in my head. The symptoms have morphed and/or compounded over time.

I read a fantastic, informative article that sums up the main points of my scattered, nonspecific-type symptoms. Here is an excerpt. I'll underline my symptoms (blessedly, some are only rare). 

"Chronic Lyme disease is a chameleon. It can run the gamut from fairly mild to extremely severe. The symptoms can affect virtually every part of the body and include severe headaches, severe arthritis, pains all over the body, vision and hearing problems, dizziness, swollen glands, fevers, heart arrhythmias, heart failure, intestinal and stomach disorders, rashes, and seizures. But as bad as the symptoms are, the worst ones affect the brain and nervous system leading to impaired memory, severe insomnia, mood disorders like depression, anxiety, and bipolar disorder, difficulty concentrating, mental fogginess, inability to follow conversations, and numbness, tingling, 'buzzing' and pains in the arms, legs, hands, and feet. I have seen patients who have almost all of the symptoms at the same time! But as bad as all of this is there is something even worse about chronic Lyme disease.

"Chronic Lyme disease is also an impersonator. And more often than not, it is misdiagnosed. That's because the symptoms can mimic other diseases and because the diagnostic tests for chronic Lyme disease are unreliable. Even in proven cases of chronic Lyme disease, the tests are usually negative. So most people don't even know they have it.

"They are often misdiagnosed as having other diseases and disorders such as multiple sclerosis, autoimmune disease, depression, neurosis, rheumatoid arthritis, ALS, colitis, irritable bowel syndrome, epilepsy, fibromyalgia, dementia, chronic fatigue syndrome, chronic mold toxicity, and ADD (attention deficit disorder). So instead of receiving proper treatment, many chronic Lyme disease sufferers receive prescriptions..."

This was interesting to me:

"...Chronic Lyme is not a disease. It's a collection of various chronic multi-system disorders. Properly speaking, chronic Lyme is a syndrome. The dictionary says that a syndrome is 'a group of signs and symptoms that occur together and characterize a particular abnormality or condition.' Syndromes can have many different factors causing them. They are rarely limited to just one factor. And that is why there is no one successful treatment for chronic Lyme. 

"...Each case must be treated individually according to the systems that are affected." (Dr. Frank Shallenberger's Second Opinion newsletter, "The Reason Most Lyme Sufferers Can't Get Any Help--Until Now," November 2014, Vol. XXIV, No. 11.)

I also have an autoimmune disease that attacks connective tissues. It is probably secondary to Lyme and will probably completely dissipate with the treatment of the Lyme. The only awful symptoms I get from it at this time are canker sores and frozen lower legs and feet. Sometimes I think I'll get frostbite. 

Also, my genetic mutations make me extra special with creating some limited nutrient absorption (I'm malnourished a bit), impaired neurotransmitter production (sorry brain), zero detoxing ability (high metals and toxins in my body), and inability to break down adrenaline (THAT'S a bundle of fun at two in the morning). 

Back to Lyme, I'd have to think, think, think to give you a specific listing of what I have felt exactly. 

My MAIN complaints over the years have usually involved my guts misbehaving--reflux, pain, spasms, altered bowel patterns, nausea, pain that made me wonder if I was dying, burning that wakes me from sleep, weight loss, appendicitis, a paralyzed/inflamed gallbladder, gallbladder attacks, cramps, pain after eating (like canker sores in my small intestine), pain when the stomach is empty, short-lived gastroparesis, low calorie intake, fasting for gut rest, food intolerance, food aversion, sometimes all at once, sometimes a few at a time...ugh, I feel sick just writing about it. 

There are also the MAIN, SILENT complaints of depression, anxiety, agoraphobia, hopelessness, feeling like I'm dying...you know, the cheerful stuff that never wants to come out when an insincere, regular old doctor with his eyes on the chart, head in the last exam room, and stomach in the break room halfheartedly asks, "What's going on today?"

Yeah, no. I'm not talking to you about this. 

Anyway. This is an introduction to how I feel, on a very general level. The symptoms I feel with treatment are a whole other ball of fun that I'll sum up in a list:

Extreme fatigue

Extreme muscle weakness

Zero stamina

Gait disturbances

Dizziness

Low appetite

Gut pain

Nausea

Bad taste in my mouth

Very poor memory

Extreme indecisiveness and inability to focus

Sometimes irritability

Anxiety

Swelling and pain around bee venom sites (yay hot pad)

And I need a soft place to recline because I'm skinny/bony and have loosey-goosey muscle tone.

You know what this is? These are part of herx reactions: when the Lyme spirochetes come out swinging and hopefully die after being attacked by good stuff. This is Lyme to the max for me. This is what I would be down the road if I didn't get treated. 

That's what I mean when I say that with Lyme, you have to get worse before you get better. I see this herxing stuff as a good sign overall. It's induced, and probably temporary as it eases up. 

But I'm not going to think about the future. Expectations don't serve me well. I just know that today is just right, my present is perfect, and the way I feel is exactly as it should be.