My Disastrous Symptom Flare & How I Plan to Get Out of It

Before I’d even opened my eyes, I knew something was terribly wrong. Every muscle in my body hurt. I was drenched in sweat. My heart was racing. I had an 101º fever.

As I lay there trying to will myself out of bed, my heart-monitor watch went off, warning of a high heart rate. I didn’t think much of it because I had a fever, so of course my heart would be above 100.

But then it kept going off. Again. And again.

Not having it, I rolled over and slapped on my blood pressure cuff. My pulse was 166. Crap crap crap! This was really happening again.

The last time “this” happened, I left my house on a stretcher with a one-way ticket to the ER after hours and hours of unrelenting tachycardia. But today, I was ready, and I was determined I would not end up in the hospital!

So I peeled myself out of bed, only for my heart to rise more.

“I’m at 185!” I yelled to my family. “I need fluids now!”

To a random person, shouting about a number without a unit or other qualifier and the vague term, “fluids,” would seem ambiguous. But my mom knew it was my heart rate, and that she’d better sanitize the table and grab my emergency infusion box before my symptoms escalated further and made me too weak to treat myself*—yes, I’m at the point where I keep several liters of IV fluids and port-accessing supplies on hand at all times.

The contents of my emergency infusion box.

In the last few months, I’ve developed incapacitating tachycardia (fast heart rate) attacks like this weekend’s. They tend to happen at night, or sometimes in the morning. Showering sets them off, or lying in bed relaxed and doing nothing. They last for half an hour and resolve, or they last for hours and send me to the ER.

I never know what’s in store with each attack.

Doctors have blamed the attacks on my having POTS, which means my autonomic nervous system is failing at regulating heart rate and blood pressure. I also hypothesize that my body is failing at regulating temperature, which leads to these fevers in the absence of acute infection. But I’ve had POTS off and on for years, and it’s never caused me this much trouble in such dramatic ways. We’re trying to get to the bottom of the cause and figure out how to stop the attacks.

Last month, I finally started a drug for POTS and ME called Mestinon. It acts on acetylcholine receptors, which some people with POTS have antibodies against. It doesn’t help most people with POTS who try it, but despite the latest tachycardia attack, the overall trend of my daily heart-rate data shows that it helps me a lot. My resting heart rate when I’m not having a flare-up is now in the 80s or upper 70s, down from the 100s before starting Mestinon, and it doesn’t increase as much from basic activities anymore.

But the tachycardia attacks suggest Mestinon is not a panacea.

There are a lot of people who think those of us with chronic illnesses are frail or weak. And physically, we may be, as I’m reminded every time I try to take a normal shower only to end up completely wiped of energy or in an ambulance.

But despite my physical weaknesses, only a true badass can do a nurse’s job to themselves while their heart is also dangerously close to its maximum rate. Only a true badass can nonchalantly jab a 3/4” needle into their own chest without anesthetic and without flinching or hesitation.

That badass was me. I saved myself from myself this time.

Not everyone can stab themselves in the chest like this.

But of course, my body wasn’t going to make it easy.

Amazingly, the tachycardia wasn’t even the worst part of this misadventure. Oh, no. When you have ME and Lyme, in a flare, you may get all of the usual miseries of a flu minus the coughing and congestion. You get aches and stabbing pains in random muscles that make no sense. You get crushing headaches. You get chills and shakes. You get nausea so bad you don’t dare eat anything but a few scoops of Rice Chex all day. You get that feeling that someone sucked all the energy out of you, so much so, that the ten feet to the toilet might as well be ten miles.

“What did I do wrong?” I moaned to whomever was in earshot as I plopped onto the coach with my IV pole.

“Don’t go there,” my dad consoled me. “You didn’t do anything to deserve this.”

“No, I mean, what part of treatment isn’t working?”

Of course, at the back of my mind, I wonder if those two years of intense antibiotics didn’t kill enough of the Lyme, and now it’s flaring up. I wonder if this time around, the antibiotics would help my symptoms rather than seemingly worsening some of them permanently. I won’t know unless I try, but as I cling to what’s left of my quality of life, I’ve decided that I’m not willing to find out.

I recognize that antibiotics are critical for many people with chronic Lyme, but there needs to be more acknowledgement that they’re not the answer for everyone. We need more research so that we figure out why some people respond while others end up like me, and more importantly, what to do about it.

So my inadequate response to antibiotics has left me to treat my symptoms as if they’re a post-infectious autoimmune condition. It’s left me to focus on building up my immune system so I can fight off whatever remnants of infections remain. It’s left me to treat chronic viruses and inflammation, and to manage every symptom as best I can. Yes, this means I see six different doctors, but on the whole, I’m better than a year ago.

Nevertheless, this weekend forced me to realize that I’ve been in a downwards trend for at least two months. It’s lit a fire under me to turn things around, somehow, some way.

So here are the adjustments I’m making to my treatment:

More Mestinon

Since all of my tachycardia attacks happen at night or first thing in the morning, it seemed prudent to add a third dose of Mestinon in the evenings. So far, so good. My doctor wants me to go all the way to the max dose if I can tolerate it.

More Low-Dose Naltrexone

This is a drug originally intended to treat opioid addiction which has turned out to have immune-modulating and anti-inflammatory effects at low doses. It’s been used in MS, Fibromyalgia, PANS, Lyme, and ME with success.

The reason I want to increase this is that some of my neuroimmune symptoms improve when I take NSAIDS like Alleve and Advil. I believe there’s an inflammatory process at work, because my joints were visibly swollen for a couple of days leading up to this tachycardia attack. And I had started ticking again, ever so slightly, which is an old PANS symptom that almost never happens anymore. (But then you could argue the presence of PANS symptoms could mean infection, so who even knows?)

However, I don’t want to take NSAIDS every day because I already have significant GI issues and tinnitus, which this drug class can cause or worsen. Low-dose Naltrexone doesn’t carry this risk. I’m only at 0.5 mg so far, so I have a lot of room to increase the dose if my doctor will approve. Then again, she probably has a reason for keeping it at this extremely low dose, so we’ll see.

Less Seroquel

Admittedly, I’ve developed a lot of anxiety around taking medicines thanks to my tachycardia attacks. A few nights ago, I couldn’t even take nose spray because I was afraid it would send me into cardiac arrest. (Yes, I’m working on this fear in therapy.) And since I’ve had multiple tachycardia attacks within twenty minutes of taking Seroquel, despite my very-smart psychiatrist’s reassurances and EKGs showing normal heart rhythm, I’m now very scared of the medicine.

My mood has been stable for quite a while now, so I feel ready to try to reduce my dosage. Seroquel may have less of a role in my tachycardia than I’m imagining, but I’d really like to take as little anti-psychotic medication as possible for quite a few reasons. But I’d also like to not feel suicidal, so I know I’m going right back to the old dose if any of that comes back.

Get back on N-Acetyl-Cysteine

This is an amino acid which is a precursor to the antioxidant glutathione, which is important for controlling inflammation. Glutathione breaks down too much in the stomach to take it by mouth directly, so taking NAC is the next best thing.

Studies have shown that people with ME are low in glutathione. Supplementing with 600 mg of NAC three times per day led to a significant improvement in ME symptoms.

I started taking NAC sometime in October and improved dramatically during that month. I’m not entirely sure when I started slacking on it, but I think it was in January. And within a few weeks, my decline began. This doesn’t necessarily mean the lack of NAC was responsible, but I doubt it helped.

Get back on D-Ribose

This is a simple sugar that the body naturally makes in order to create ATP, the essential fuel for all of our cells. One problem hypothesized in ME/CFS is that our bodies don’t make enough D-ribose, and/or we dump what little we do make. So, supplementing with large doses saturates the body and forces it to do something with it.

Starting D-ribose last summer was the turning point where I started to get better.

Last month, I found out my red blood cell count was low. I then read that coffee could impair iron absorption, so I stopped having coffee every day, which was the substrate for my ribose. And then I would forget to make tea as a substitution. I’ve been less consistent with my ribose for over a month, so it’s time to take it seriously again.

Get back on Creatine

Creatine is another substance found in the body, mostly in muscles and the brain. The supplement is known mainly for boosting athletic performance because the body needs creatine for the muscles to have adequate energy.

In ME/CFS, a major symptom is disproportionate muscle fatiguability related to exertion, so it makes sense that supplementing with creatine could help. When I was more intentional with creatine, I felt less frail and more able to do my desk job for a few hours a day without worsening my symptoms.

I had also been taking creatine in my morning coffee, so it’s the same story as above.

Will any of this work?

Ah, the thousand-dollar question. I can’t know for sure, but based on studies, my past experiences, and my doctors’ experience, I feel hopeful that these changes will lead to improvement. Plus, there are still many other things I haven’t tried at all, like beta-blockers, Florinef, B12 shots, and biofeedback. And there’s still the option of going back to doing IVIG more often, or possibly trying Rituxan. Or perhaps I need to give myself IV fluids every week regardless of symptoms. The point is, I am far from exhausting all options.

Thankfully, after only four days of misery, I’m back to the baseline I was at before my flare-up. Overall, I’m still not where I want to be, but I try to hold out hope that more tweaks to treatment will lead to more improvement and more ability to live my life as I wish—and fewer emergency infusions!

*NOTE: I’ve received training from a nurse, at my doctor’s order, on how to access my own port safely. NEVER attempt to access your own port/central line if you have not received explicit training and permission to do so, as you can get a serious infection if you miss even one part of the sterile procedure. The catheter goes straight into your heart. Accessing it safely is a much more involved process than sticking in an IV.

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