Long COVID patients are coming out of the woodwork. Many have been desperately seeking answers for months.
Symptoms are frequently severe, debilitating, life changing. And it’s not the elderly. This is the spring break crowd.
Thankfully there is hope:
Doctors around the world are reporting 90%+ success rates with various experimental regimens utilizing cheap generic drugs like ivermectin, steroids and fluvoxamine, but sometimes it’s difficult to predict who will respond to what. And oftentimes the symptoms disappear with treatment only to resurface weeks later.
Tech to the rescue:
Utilizing cutting edge AI and machine learning there are advanced diagnostic tests on the horizon that promise to help determine both optimal therapies and duration of treatment. These include an advanced blood panel and whole body nuclear imaging.
Doesn’t sound cheap, does it?
But not to worry: where there’s a will there’s a way out.
IN IT FOR THE LONG HAUL
In early 2021 we started seeing a trickle of patients who had spent months and in some cases nearly a year suffering from strange and often debilitating symptoms.
Many had been to multiple specialists and had million dollar workups, including Chest CT scans, Brain MRI’s, exercise stress tests, pulmonary function tests, echocardiograms, doppler ultrasounds, scores of blood tests, allergy testing, and on and on.
They had seen specialists ranging from cardiologists to neurologists, pulmonologists to rheumatologists, endocrinologists to gastroenterologists and all had come up empty, in many cases finally telling them that it was just all in their heads – the usual fall back when every test comes back negative and the syndrome hasn’t been seen before.
Eventually these patients had come to the suspicion that their symptoms might in some way be related to an earlier COVID-19 infection.
Through the power of social networking hashtags like #LongHaulers and #LongCOVID, Facebook groups like the 100k+ member Survivor Corps, online forums like r/covidlonghaulers on Reddit, and even a 14k+ strong Slack group called the Body Politic COVID-19 Support Group, they had discovered others suffering from similar symptoms.
This trickle of patients has been picking up, and I’m worried the long haul problem will prove to be worse than the acute illness itself for the vast majority of affected patients.
And there may be severe long term effects we have yet to discover.
Already there are some indications that severe long term damage has occurred in many who have supposedly recovered. There has been a documented drop of 8 IQ points in the most severe hospitalized patients. Brain fog is a common complaint.
Chronic fatigue is frequent. Many healthy active patients are now wiped out after a few hours of their usual work routine.
Anxiety like symptoms are common. Patients complain of their heart rate suddenly skyrocketing with no warning.
Trouble sleeping is nearly universal. Either unable to get to sleep or stay asleep or both.
Some have terrible body pain or severe daily headaches.
The list goes on and unlike the mortality numbers it is not so much the very elderly who are suffering, it is preteens up through the middle aged that are hit the hardest – at least in terms of who is showing up.
The elderly may be utterly debilitated and disconnected from the social media lifelines that have pulled many younger patients out of confusion and toward some hope. Also many of the elderly have likely gone from independence to nursing home residence.
This is not uncommon after any severe illness requiring lengthy hospitalization in older age groups, but the severity of chronic illness showing up in the young is unprecedented.
- Anxiety and depression
- arthralgia (joint pain) and myalgia (muscle pain)
- chest pain, pressure or tightness similar to asthma
- chills and/or sweats often at night
- confusion or brain fog, concentration trouble, memory lapses
- cough usually dry, sometimes slightly productive, usually clear phlegm
- diarrhea and or constipation sometimes alternating
- difficulty breathing and shortness of breath, without low oxygen levels
- fatigue, constant or intermittent, often severe after exercise
- high or low grade fevers without evidence of infections
- hair loss
- lightheadedness and dizziness
- palpitations (e.g. skipped heart beats) and racing heart
WHY DOES LONG HAUL COVID HAPPEN?
In most patients long haul syndrome seems to be a form of chronic fatigue syndrome (CFS) also known as myalgic encephalitis, which is poorly understood but likely caused by changes in immune system function, a dysfunctional stress response and damage to various mechanisms of mitochondrial energy production.
CFS is sometimes seen in families as is long COVID, so likely has a genetic predisposition that is as yet uncharacterized, meaning we can’t yet predict who will develop it.
Ongoing Chronic Inflammation
Widespread Microscopic Blood Clotting
Sequestration Within the Brain
There is evidence SARS-COV-2 can enter the brain through the nasal passages and remain after resolution of the acute illness. Since the brain to some extent affects the functioning of every organ, inflammation and dysfunction within the brain could be the root cause of many widespread symptoms.
TREATING LONG HAULERS
The general approach should be to first assess if there is one or more particular therapies that are most likely to work based on the presumed source of symptoms, then eliminate any that are contraindicated for any reason, narrow it down to those least likely to cause side effects and if price sensitive start with what is most economical.
In my experience combining too many treatments together is not as effective as choosing the most likely to work and be tolerable and using that on its own. Every intervention sends the body a message and it is possible to send mixed signals and not get anywhere despite choosing therapeutics that work like a charm when used separately.
Common Therapeutic Options
1. Ivermectin 200 – 400mcg/kg for at least 2 days, depending on severity, and if not resolved the treatment is continued until resolution.
Ivermectin was studied for long haul COVID in a small Peruvian study which reported complete resolution in 88% of patients within 2 days and up to 95% resolution with extended dosing beyond 2 days. #LongCOVID #Ivermectin #DrSyedHaider Click To Tweet
In my experience the partial responders and non-responders at 2 days reach complete resolution within a month.
Generally very cheap, safe and well-tolerated with very low incidence of mostly mild side effects. Thought to work primarily due to its anti-inflammatory effects.
2. Dexamethasone 0.5 mg three times a day for 2 days then two times a day for 2 days then once a day for 2 days (can also substitute other low dose steroids if need be like prednisone 5mg).
Reported by Dr. Mobeen Syed (better known to some as “Dr. Been”), a prolific medical educator and Youtube personality who primarily reported using it as a preventive in the second week of acute infection, but found it can also resolve long haul COVID symptoms.
It works by suppressing the overactive immune system and calms inflammation.
The drawback is there are no studies of this protocol, but it is cheap, safe and well-tolerated by most patients.
3. Fluvoxamine 50mg once or twice a day for 14 days – especially useful for brain fog and other neurological symptoms as it crosses the blood brain barrier and has a therapeutic effect in the brain.
Fluvoxamine benefits in long haul COVID were reported by a few people, most famously Dr. Drew, who was 80% better in hours and 100% better within 2 weeks. It has been shown to be 100% effective in RCTs at preventing long haul syndrome when started during the acute illness.
Fluvoxamine can be combined with mirtazapine 15 mg at night to increase efficacy and decrease side effects.
Fluvoxamine is cheap, safe, with a long history of use for OCD, anxiety and depression. More likely to cause side effects than the first two options.
It has powerful anti-inflammatory effects generated by its activation of the Sigma 1 receptor.
However it may not be an option for those already on another drug in the same class, i.e. the selective serotonin reuptake inhibitors (SSRIs), due to the increased possibility of adverse effects.
4. Colchicine 0.6 mg one to three times a day for 14 – 60 days depending on how far into symptoms.
Championed by Dr. Darrell Dimello, who has treated over 20,000 patients across India, it has been extensively used abroad for preventing and treating long Haul syndrome.
Not so cheap, but still relatively economical and easily within reach for most (with free goodrx coupons the first 3 options are generally 10’s of dollars, but colchicine is low hundreds).
More likely to cause intolerable side effects like severe nausea, vomiting and diarrhea.
The therapeutic effect here is likely based on its powerful anti-inflammatory action.
Alternative: over the counter non-steroidal anti-inflammatories (NSAIDS), especially naproxen 220 – 550 mg every 12 hours. This alone resolved long haul symptoms completely within 48 hours for one of my patients – and it wasn’t my prescription, so kudos to him for figuring it out – hopefully the information will be of benefit to others.
5. Blood thinners – aspirin, plavix, eliquis, lovenox etc.
These have been used by Dr. Dimello and others around the world, often in combination with colchicine or other anti-inflammatories.
Cheap and safe if there is no history of bleeding, stomach ulcers, varices (enlarged blood vessels in the stomach or esophagus that are prone to bleeding) or liver failure. Side effects are generally not a major issue, though some may experience significant bruising.
These presumably work primarily by reversing the microscopic clotting that is brought on by inflammation. Occasionally it’s necessary to do imaging tests like a CT scan to help determine if the stronger ones like injection lovenox are likely to help.
An HIV drug, this is expensive (in the $1000s), and is more risky, with serious and severe side effects sometimes reported.
It works as an anti-inflammatory and balances the immune system. Given the price, side effect profile and various contraindications, it is lower down on the list of options and is unlikely to be necessary for most patients.
6. HCQ and all the rest
There are many other promising drugs, supplements and herbs being used including hydroxychloroquine (cheap and safe despite the media furor) and eventually we hope to be able to refine treatment protocols in order to better predict who will benefit from which medication.
Many patients report cleaning up their diet and lifestyle can partially or completely resolve long haul symptoms
The one tricky aspect is that although exercise is generally part of a healthy lifestyle it often worsens symptoms or brings on exacerbations in long COVID and is commonly the precipitating factor in the initial development of long COVID symptoms – this is similar to chronic fatigue syndrome where it is known that patients have an abnormal and harmful biochemical and metabolic response to exercise.
Because of this most physicians advise patients not exercise until symptoms have fully resolved.
Aside from avoiding exercise, the general approach to a healthy lifestyle is common to any chronic illness and has been laid out in my post A Template for Optimal Health.
The promise of diagnostic tests is that not only will we have verifiable evidence confirming the diagnosis, but we can track changes during treatment and in cases where symptoms disappear and the testing still shows abnormalities, with a trend towards improvement, we might choose to continue therapy until the underlying abnormalities completely resolve in the hopes of curing the illness and thereby preventing recurrences.
This is Dr. Bruce Patterson’s startup. Dr. Patterson is a giant in the field of HIV research and the long haul community is lucky to have him investigating this syndrome.
IncellDx used machine learning to find a specific long COVID diagnostic signature based on characteristic changes in various inflammatory markers and in numbers of various immune system cells in patients with long COVID.
More than 2500 patients and many physicians, including myself have signed up in anticipation of the imminent release of this test.
The Fleming Method
Dr. Richard Fleming is the original proponent of the now mainstream inflammatory model of cardiovascular disease pathogenesis.
His proprietary methodology utilizes quantitative nuclear isotope imaging to detect inflammation indicating active long haul disease.
This is not yet widely available and access depends on finding a nuclear imaging center where staff have been trained and licensed by Dr. Fleming.
Since we are all in uncharted waters this usually requires flexibility and experimentation on the part of both physician and patient.
A readiness to experiment with dosing and frequency, duration and tapering are mandatory for the best results.
Patients need some autonomy within a loose framework so they can adjust treatment at home and frequent follow-up is required.
For those who have the resources diagnostic testing may help provide a shortcut and some much needed empirical validation and it is a last resort in the hypothetical case where everything we can think of may have failed.
But in my experience failures are the exception rather than the rule in long COVID care.
And overall there are many bright rays of hope on the horizon for the long suffering long haulers out there.