Doctors who work with patients who have chronic fatigue, chronic Lyme, and fibromyalgia have remarked on the similarity between people with these conditions and those suffering the frequently disabling symptoms of long Covid.
Like chronic Lyme, in which many patients don’t remember either a tick bite or Lyme disease, patients with all the features of long Covid frequently say, “But my case was so mild, I thought it was just a bad cold or the flu.”
Others, of course, develop long Covid after a personally devastating case of either the Delta or Omicron variants.
You may have read about long Covid clinics at the larger medical centers. Since there are no cures for long Covid, these centers (from what patients have told me) are primarily gathering data via lots of detailed questionnaires. They’re trying to get a clearer picture of the condition and to discover some consistently effective diagnostic tests.
You get Covid and win, you get Covid and lose
Picture the Covid virus invading your whole body–every organ. If you have a good immune system, your body fights back and wins and you move on.
But more than one million Americans lost their Covid battle when they died and untold tens of millions of others likely have residual Covid virus in their bodies. In these people, the virus may be harmlessly held in check by the immune system or, having bollixed up the repair systems, may be causing long-term damage to four extremely important areas of the body: the brain, lungs, heart, and blood vessels, and what’s left of the immune system.
First, our brain and lungs
Researchers in Japan were the first to note that when a person was infected with Covid, the inflammation that followed (remember cytokines?) triggered microscopic blood clots throughout the body. When these clots went into the brain, patients would become confused and disoriented, reporting problems with reduced attention, memory, and word finding. In the lungs, there’d be shortness of breath, reduced pulse ox (saturation of oxygen carried by your red blood cells), and, if things got really bad, hospital admission and maybe a ventilator.
Thirty years ago, one theory behind chronic fatigue syndrome, then called the hypercoagulation hypothesis, was that the body was developing microclots. However, daily injections of the blood thinner heparin were considered too risky and too inconvenient for sustained treatment. Interestingly, the supplement nattokinase (see supplement list below) was proposed as an alternative and safer treatment for chronic fatigue.
Now, thirty years later, long Covid researchers are talking about the similarity between long COVID and chronic fatigue syndrome.
Your heart and blood vessels
Many long Covid patients have symptoms of a condition called POTS (paroxysmal orthostatic tachycardia syndrome), in which the heart rate increases inappropriately and blood pressure falls when sufferers rise from a lying down position to a standing one. The medical term is dysautonomia and I’ve written about this with Covid in the past.
Milder cases of POTS are associated with exercise intolerance, one of the key features of fibromyalgia in which a fibro patient simply crashes the day after an attempt to exercise. The very latest research suggests that Covid invades superficial nerve endings, a condition called small fiber neuropathy, which is present also with fibromyalgia and would account for people who have long Covid POTS that includes widespread muscle pain.
The virus that causes Covid-19, SARS-CoV-2, is well known to affect the heart as well, causing rhythm disturbances and congestive heart failure. These are the same abnormalities found with chronic Lyme disease. Some of the physicians working with Lyme patients have even suggested that Covid triggers a Lyme reactivation. I have not observed this, but with Covid anything is possible.
I do know that both Covid and Lyme can trigger a condition called mast cell activation syndrome (MCAS) in which out of the blue you develop severe allergy symptoms. When you reach the long Covid protocol later in this Health Tip, you’ll note there is an antihistamine included and now you know why.
Long Covid and your immune system
Lastly, there are many features of long Covid, fibromyalgia, chronic Lyme, and chronic fatigue that suggest we’re dealing with yet another autoimmune disease. I wrote about the ever-expanding world of autoimmune diseases last week. Some researchers are suggesting that immune suppression medications like Humira might be effective for long Covid, but this investigation is still in an early stage.
The long Covid autoimmune phenomenon suggests that, somehow, during the process of infecting us and overwhelming our immune systems, the Covid virus spreads to every single part of the body and remains there. These chronic, smoldering infections keep the Covid immune switch in the “on” position, and for some people who may be prone to autoimmune disease this throws the immune system into confused disarray.
Then, just like with other autoimmune diseases, your very own immune system starts seeing what it’s supposed to be protecting (you) as an enemy and attacks you. Researchers have found the viral remnants of Covid embedded in surgical specimens months after Covid infection.
At any time–months or even years later–your immune system could start attacking the residual Covid in your thyroid gland, your liver, or your kidneys.
What can be done for people with long Covid?
Seriously ill long Covid patients are best treated in one of the few centers dedicated to this type of rehabilitation. These are patients who have been hospitalized, often on a ventilator, and left with major physical disabilities.
The Shirley Ryan Ability Lab has an excellent long Covid recovery and rehab program, which from the website looks like it’s using the same tools used for recovery from a stroke.
The long Covid patients we see at WholeHealth Chicago are at home and basically trying to feel better and get their lives back. Like patients with fibromyalgia, chronic fatigue syndrome, and chronic Lyme disease, because their tests are negative they face an uphill battle with disability insurance companies (“You’re telling us you feel terrible, but all your tests for any disorder are negative?”).
They try to fight back but with brain fog, POTS, and getting out of breath when they walk from bedroom to bathroom, they’re really in dire straits.
There are several unproven long Covid protocols online. Ours is a modification of the one developed by the Front Line Covid-19 Critical Care (FLCCC) Alliance. The prescription medications listed at the link are not dangerous, including the dose recommendation for Ivermectin, but the veiled threats to Illinois physicians (and their medical licenses) who prescribe ivermectin have caused us to remove it from our list. Please don’t even ask for it.
We can discuss the other prescription medications you’ll see at the link during an appointment. The last one mentioned, Maraviroc, is an antiviral developed for HIV. Recently approved for Covid-19 but likely not covered by health insurance, it costs $500 per month.
Our supplement recommendations are similar to the FLCCC Alliance:
- SPM Active (anti-inflammatory extracted from fish oil), twice daily.
- Vitamin D, 5,000 IU daily.
- Theracurmin HP(an anti-inflammatory), twice daily.
- ALAMax CR (a high-potency antioxidant used in Asia for Covid), 450 mg once daily. (use code: whc2021).
- Low-dose naltrexone, 4.5 mg at bedtime.
- Nattokinase (used in Japan for microclots), twice daily.
- HistDAO (for mast cell activation), twice daily. (use code: whc2021).
This is one of the most complex entries in our series on Root Causes of Chronic Fatigue. However, especially now that the Covid numbers are dropping we need to remember those who are still suffering and not leave them behind.
David Edelberg, MD