Just for background, I had been having creeping health issues that I know now were symptoms of progressing MECFS. In March of 2020 I had 3 weeks of acute Covid, and appeared to be mostly recovered. Summer 2020 I started declining, with shortness of breath, fatigue, brain fog, and postprandial tachycardia. I also had progressing anxiety symptoms, but that is a story for another day.
I had been improving gradually starting in 2021, partially due to learning to pace, diet interventions, and treatment for my MCAS. Still, overexertion would trigger PEM, taking a while to recover each time. Still, I was doing better, although nowhere near where I was before Covid.
In April of this year I heard some reports of people having nearly full remission with a very accessible intervention: nicotine patches. It sounded too good to be true!
The weekend of my daughter’s birthday I did too much and it was hot. The perfect recipe for PEM. On Monday I was struggling to think clearly, was exhausted and definitely starting to hit PEM. I decided, what the heck, nicotine patch it is!
I honestly didn’t think it through as well as I should have. (I do have a tendency to be impulsive. That’s how I ended up married… A story for another day!) I should have started with half of a patch, but used a full 7mg one.
I had progressively increasing dizziness and nausea. After about 4 hours the nausea progressed to vomiting, which was unpleasant. However, right afterwards the dizziness cleared, along with the brain fog, the fatigue and breathlessness of PEM, and I felt absolutely fantastic!
I had so much energy, a stark contrast to how I had been in the morning. I did not experience the Herx reactions many others described.
That week I did remove the patch about an hour before going to bed, and had refreshing sleep. My HRV went from about 14 to 29 after a few days. The second week on the patch my sleep was not as refreshing and my HRV dropped into the low 20s.
The 3rd week I had to do physical activity at work, in the heat. I kept using the patches that week as well, as I didn’t want to risk a crash. And I didn’t have one! So far the heat hasn’t hit me hard this year, like it usually does.
After that week I decided to try the phase 2 properly but was hit with a significant withdrawal headache. That is an issue I have run across with other meds and supplements: I will have a good or neutral effect, but withdrawal causes physical distress.
I decided I probably should ease down, and did half a patch (3.5 mg) each day. Note: this means I covered half of it, not that I CUT it in half! This worked really well for me as a maintenance level amount. I did finally do a week with no patch, but overexertion then did trigger mild PEM. Adding a 7mg np then was way too much for me, as it caused significant nausea and dizziness. A 3.5mg worked to stave off the PEM effectively. I was tired, but a good night or two of sleep washed it away.
Overall, the nicotine patch treatment has been very successful for me, but I don’t think I am “cured” at all. It’s still there, waiting when I have no patch and overexert myself. My baseline has jumped, though, to a level that most people might not realize I am I’ll unless I point it out.
Oh, one more thing to mention about my experience. After 4 days on the patch my gut was very happy and functioning in a way I assume normal people who don’t have MCAS experience. That’s been pretty stable unless I gorge myself with my trigger foods. I have been able to have a little bit of garlic!
I can’t say everyone should try this treatment, but it’s fascinating how it has helped many with Long Covid and MECFS, giving us some clues to underlying mechanisms of those illnesses. This was just my experience, others report different results!
What time do you take a patch on and off each day? I am going to try this because I still have ongoing fatigue from long COVID since 2021.
I put it on first thing in the morning and I took it off one hour before going to bed.
I definitely suggest starting with a lower dose to begin with by covering half of the patch. I really wish I had done that the first day, as my body was very nicotine-naive!
And not everyone has full remission. Even if you do, remember to still rest/pace as the body will use the extra energy to heal. It’s really hard, though, as we want to “catch up” on life as soon as we have extra energy!
Thanks, will try. I’m on third long COVID setback. First time one year in I took maraviroc and started feeling better. Then I got sick a bunch of times this winter and developed anxiety fatigue and ear problems. I had felt almost normal for a month after taking maraviroc and chlorpheniramine at night. But then our family got COVID again just recently and the anxiety and fatigue/depression returned right at the onset. I am taking paxlovid since day 2 hoping it will reduce further damage, and will probably try maraviroc again if it doesn’t get better after a few weeks. But I’m the meantime I thought I might give the patch a try. I have three young kids so it’s almost impossible not to keep catching COVID. But if I recover again, I will consider wearing an N95 all the time.
I really like wellbefore.com masks. They have different sizes and seal pretty well. Different colors and types, too!
K.Scott, try ivermectin as a relapse/crash suppressor. It’s another tool in the arsenal on top of nicotine patches and dry fasting. Using them correctly will get you back to health.
Thanks, I kind of figured this out by trial and error recently although I am doing regular fasting not dry fasting. It seems like the ivermectin is more effective after the strong fast and I felt like sleep was more refreshing the next morning.