I declined several treatments for long COVID. I believe those decisions had a positive impact on my recovery.
Philosophy
There are no approved medical treatments or even tests for long COVID.
Long COVID is not one illness. COVID causes the symptoms, but different people respond differently after infection.
My long COVID doctor told me I had a 50/50 chance of recovering 12-18 months after infection and that if I didn’t recover in that timeframe, then I should expect to live with the illness for a long period of time.
I have a job that has been very accommodating and allowed me to take a very extended medical leave. I also have the financial resources to go without income for some time. I would rather miss several months of income than be disabled for the rest of my life.
Any treatments that require travel to an appointment or other kinds of exertion can run counter to the rest and pacing that I’m doing. Also, my warning signs for post-exertional malaise are relatively subtle, so my feeling is that drugs that could disrupt those warning symptoms might actually hurt in the long run.
Putting all this together, I sought treatments that gave me the best chance of recovering within the first year. In particular I was not interested in treatments to mask symptoms just so I could return to work. I was interested in treatments for underlying issues.
Above all, I know my body and how I treat it is up to me.
U.S. ME/CFS Clinician Coalition
The U.S. ME/CFS Clinician Coalition published treatment recommendations I refer to several times below. That is a very readable guide written by western doctors for western doctors trying to treat people with ME/CFS. ME/CFS is not exactly the same as long COVID, but many of the symptoms are similar, so their recommendations have been very helpful to me.
As you will read below, the coalition’s treatment recommendations gave me a lot of information to learn about medications.
Midodrine
About a month after my initial infection, I was still very fatigued. My PCP referred me to a cardiologist and told me to take my blood pressure frequently and give it to the cardiologist. I did that and the cardiologist said my blood pressure was fine.
At my next PCP appointment, I gave my doctor the same blood pressure readings. He said my blood pressure was low and suggested I take midodrine to raise my blood pressure. I said I didn’t think my blood pressure was low and neither did the cardiologist. Furthermore at that very appointment my blood pressure was perfectly normal. My PCP got angry and defensive and said, “I’m just trying to make you feel better.” I caved and he wrote the prescription. He told me to take Midodrine 3 times a day and stop if my blood pressure went over 140.
I got home and Googled for midodrine, which contained a huge warning that started with:
Midodrine may cause supine hypertension (high blood pressure that occurs when lying flat on your back). This medication should only be used by people whose low blood pressure severely limits their ability to perform daily activities and who could not be treated successfully with other therapies.
Later on it says
Take midodrine during daytime hours when you need to be upright. Avoid taking a dose when you will be lying down for any length of time.
At that point my long COVID journey, I was so tired that I was spending most of my time in bed. Clearly this was the wrong drug for me. I got very angry and started looking for a new PCP.
Interestingly, after I got angry and spent more time upright looking for a new doctor, I started feeling better. That was when I learned that lying down too much makes me feel worse.
I know that midodrine is sometimes used to treat POTS, but I don’t have POTS. Later my cardiologist said that he only prescribes midodrine for people with Parkinson’s or for diabetics on the day of dialysis treatment.
I really feel like I dodged a bullet with that one.
Yale Paxlovid Trial
I was offered to join the Yale Paxlovid for Long COVID Trial where I would be given 15 days of Paxlovid or 15 days of placebo. I took Paxlovid for my initial infection and the taste was so bad it would wake me up in the night. In the trial they figured out how to make the placebo taste just as bad. The idea of having that terrible taste for 15 days, especially when it might be a placebo, was a no-go for me.
Wellbutrin
An internal medicine doctor who did not ask any questions about my mood suggested I take Wellbutrin, which is an anti-depressant that includes a stimulant. He said that the stimulant would boast my energy, but I had to be careful not to use too much of that energy because it could trigger post-exertional malaise.
In the week before the appointment, I had four straight days of euphoria. I had recently had some improvement and I felt absolutely fantastic, like I do when I have been sick a long time and recover.
I did not have depression. I was very fatigued and could not do much, but there were many things that I wanted to do. Depression is when you lose motivation, but my motivation was entirely intact. (I confirmed all this with my counselor.)
I declined Wellbutrin and I believe that was the right choice.
Hyperbaric Oxygen Therapy
A long COVID doctor suggested I try hyperbaric oxygen therapy (HBOT). This one I stuggled with a lot, but eventually decided it would not be good for long COVID fatigue. I wrote a detailed article about that decision here: Evaluating HBOT for Long COVID.
Modafinil
An internal medicine doctor suggested I take the stimulant Modafinil to treat my fatigue.
The U.S. ME/CFS Clinician Coalition treatment recommendations contain the following statements:
Note: Stimulants should be used with caution in patients with ME/CFS. Patients should be cautioned not to exceed the level of activity they can generally tolerate to avoid “crashing.”
Under Modafinil specifically it says
For somnolence, cognitive/fog, daytime fatigue. Start with a small dose and increase slowly to the most effective dose. Can disrupt sleep. Stimulants most helpful when anxiety scores are low and the Epworth Sleepiness Scale is greater than 10.
At this point in my recovery, my biggest problem was not exactly that I didn’t have energy. If I used too much of my energy, then I would crash. So giving me a drug to increase my energy would not really help because I had no way to expend the energy in a safe way.
Also, my anxiety was not low and my Epworth Sleepiness Scale was 5.
I never tried Modafinil.
Low Dose Naltrexone
Low Dose Naltrexone (LDN) is an off-label use of Naltrexone that in some people can blunt post-exertional malaise (PEM). It does not correct the underlying problem, but instead masks the symptoms.
It is a well-known treatment for ME/CFS and the U.S. ME/CFS Clinician Coalition treatment recommendations describe how to prescribe it in detail.
The coalition recommends a 4 month trial of the drug.
I decided that if I got into the 12-18 month post-infection timeframe and I was still experiencing PEM that I would give this a shot. Fortunately I don’t think I am experiencing PEM any more, so I never tried this drug.
Antihistamines
I had some congestion that kept lingering.
I tried one dose of Zyrtec (cetirizine) in the evening and I was tired for the entire next day. I stopped after one dose because I don’t need anything that makes me even more tired.
I also tried the nasal antihistamine azelastine. It didn’t quite knock me out as much as Zyrtec, but I was still tired the entire next day.
Interesting, I was finally able to resolve the phlegm in my chest with acupuncture. Read more
Second Round of Physical Therapy
My first round of PT set me back months. Read more
I was doing my own pacing and improving, but the disability insurance company did not accept that as a treatment. To try to appease the insurance company, I went to a different physical therapist who came recommended by a friend with long COVID. Like the first therapist, this therapist was also trained by a long COVID clinic in how to treat patients with post-exertional malaise (PEM).
When I went to the first appointment, I knew I was pushing it. I was very tired and arrived 30 minutes early so I could rest between driving and the appointment. The first thing the therapist said was that he had read the previous therapist’s notes, so I should jump on the exercise bike. I put a stop to that immediately.
During the appointment he implied that PEM is a psychological issue and that if I feel tired I should ignore that and exert myself, anyway. He also said that graded exercise was the best treatment for me. I told him that graded exercise is the worst treatment for patients with PEM and he started arguing with me about that.
I decided that day that my health was more important than whatever the insurance company wanted me to do. Their motivation is to not pay a claim, not get me healthy.
I drove home, called the office back and cancelled the second appointment. The receptionist said I couldn’t just cancel, that the therapist had to “discharge me.” I don’t care what they do, I didn’t go back and I think that saved me from another PT disaster.
With a properly trained therapist it is possible for PT to be helpful. Read more
Conclusion
I often felt like the guy who went to the doctor and didn’t do anything they said, but as you can read here, I used a lot of other treatments for long COVID.
Hopefully one day we will have better recommended treatments for post-viral illnesses.