Every day is Groundhog Day.
I wake up, and after swallowing at least five supplements (one to activate my thyroid, two enzymes to bust blood clots, three Tollovids, an American-made Chinese herb – to keep my viral load down), I wait.
How to describe the sheet of fatigue that envelops me shortly after starting my day? As the exhaustion sets in so does the sense that my blood pressure is crashing.
I am now also dizzy and confused; even something simple like returning an Amazon item is beyond me. It’s not even 9am.
By 11am, I am back on my bed, resting until lunch. I eat as medicine, having had no appetite since this ordeal began. I down at least six antioxidants, herbal antivirals, minerals and mushroom derivatives.
Affecting 65 million people worldwide, long Covid has been called the largest ‘mass disabling event in modern history’ by The New York Times. The fact that new variants of the virus continue to emerge means an inevitable wave of reinfections, and even mild cases can cause severe long Covid.
My own battle began in February 2020 when I contracted what seemed to be an ordinary cold/flu. Pictured: Helen has neurofeedback therapy to train her brain
My own battle began in February 2020 when I contracted what seemed to be an ordinary cold/flu. It took longer than usual to shake off, but by March I, like many lockdowners, was busy baking bread and tootling around the garden.
Then weird things started happening. I would get extremely hot, exhausted and dizzy, and take to my bed for the day. Cold sores popped up on my lips every few weeks, followed by a sinus infection. In May, the day I was tested for antibodies (which I had in abundance), the disorientation began: if I turned my head, the room moved.
Holding the kettle became a Herculean task that demanded two hands followed by bed rest. That same week, feeling wretched, I drove to London to collect my youngest son.
On the return journey, I had to pull into a garage and down a bag of biscuits because I was shaking so badly. At the junction, I was so confused that I turned the wrong way, briefly aiming the car at oncoming traffic before my son screamed out.
Outwardly I look fine. Some might even say well, because the 30 or so supplements I take, including vitamin C and l-glutathione, also help my skin (as does giving up alcohol).
But a good day now is one where I don’t have to lie in bed for a portion of it and where my brain actually finds the word I am looking for. My family say things like ‘if you’re up to it’ as though I were a bit jet-lagged.
They mean well, but no one apart from the person with long Covid knows what it really feels like. I’m not exaggerating when I say that were it not for my husband, I would probably have been put into care.
In July 2020, I was introduced to Koniver Wellness’s functional medicine doctor and fellow long Covid sufferer Dr Tamsin Lewis, who began treating me.
When I checked in, the atmosphere was more five-star hotel than hospital. Pictured: the clinic in Spain
People always ask me: ‘What have you tried?’ What haven’t I tried? I’ve bought a £200 strap designed for horses which sends electric currents up your leg (nothing happened).
I’ve spent weeks of my life in a hyperbaric chamber (which simulates being underwater to get oxygen into the cells, at £100 a pop). I’ve starved, I’ve purged, I’ve chanted with gongs and thanked the universe for my blessings.
I’ve made myself sick self-medicating and even sicker properly medicating using drugs such as Fluvoxamine, a powerful SSRI antidepressant that can make some people feel violent (it did).
Long Coviders all share tips and many discussions revolve around the gut biome, which Covid disrupts. Having had bad stomach issues all my life, I wondered if this might be an avenue that needed exploring.
Eventually, having heard about its reputation for treating serious medical conditions, I checked in at the SHA Wellness Clinic in Alicante, Spain, before Christmas 2022. A favourite with the super-rich, it offers state-of-the-art long Covid treatments, including stem-cell therapy which some of my peers have tried (mostly unsuccessfully).
Before being admitted, I was interviewed by its chief doctor, Vicente Mera. He was upbeat – not something I see much of in my circles – and felt that a week’s stay could really help me.
When I checked in, the atmosphere was more five-star hotel than hospital. There was so much white marble and chrome décor, I kept walking into walls. I was seen by Dr Mera, whose first comment was ‘your main problem is that you cannot get Covid again’.
The damage is cumulative, he said, before suggesting I trial a drug normally used for cirrhosis, which helps stop the replication of the spike protein (the main Covid culprit).
Currently, the medical community more or less agrees that long Covid is caused by viral persistence, coupled with blood clots and an autoimmune-like response that creates the plethora of ongoing symptoms – from fatigue and brain fog to allergies, heart palpitations, anxiety, insomnia and lung, heart and stomach disorders. Faced with such a list, you can see why GPs are often flummoxed.
‘It’s important to identify which type of long Covid you have and which organs are affected,’ said Dr Lewis when I checked in with her after my visit. ‘Otherwise a generalised approach with medications won’t help. The priority is trying to get the body to a place where it can self-repair.’
After blood tests and an ultrasound I was put on a schedule of treatments aimed at flushing out the remaining virus (ozone therapy and colonic irrigation) and lowering inflammation (vitamin C, antioxidant drips, acupuncture and massage), followed by lymphatic drainage.
Dr Mera had my brain function tested – I was pretty switched on compared to most, he said – and sent me to see the in-house gut specialist.
The SHA’s diet is heavily probiotic, which helps repair a fragile gut biome that’s unable to absorb nutrients. I was put on lion’s mane mushroom extract and probiotics before meals, followed by l-glutamine. Dr Mera urged me to try some exercise, citing the risks of deconditioning.
This is a fine line to tread: too much exertion can lead to relapse; too little and we get even more stiff and tired.
On day five, I crashed. I felt every ounce of energy drain away, badly enough to think I might collapse.
Weird things started happening. I would get extremely hot, exhausted and dizzy, and take to my bed for the day
Dr Mera suspected this could be a reaction to many pathogens being excreted at once, which can create flu-like symptoms. He also found that I had high cholesterol and low vitamin B12.
For some, a week at the SHA is enough to reset. For me, after a few days of absolute rest, I noticed that my digestive system was finally working.
Viral waste products must be secreted or they recirculate, which is why anyone with long Covid should also look into the osteopathic Perrin Technique.
Its inventor, Dr Raymond Perrin, believes that long Covid and ME sufferers do not detoxify properly.
While many wellness centres purport to be medical but actually just push supplements, the SHA is a bona fide medical clinic.
Is it worth the £10,000 per week price tag, though? Well, yes, in that having so many things under one roof is hugely beneficial. Long Covid sufferers are simply too exhausted to travel to endless appointments.
Of course, few can afford such clinics and treatments, but I’ve found that some of the things that help cost nothing. For example, cold showers, early morning light exposure, nature walks, slow stretching, breath work and fasting.
And Covid’s depletion of vital nutrients can be countered with supplements. Many also respond to low-dose naltrexone, which is available on the NHS. Until we have an approved medical protocol we have to make do with what there is.
It’s been five months since my stay at the SHA, and I have had many good days. I even made it to the Alps over the winter and skied in the mornings (then recovered all afternoon). I found using methylene blue (which gets oxygen to the cells and is used in hospitals) as a drip gave me an instant lift.
I’m also working with a naturopath who found active virus and bacteria in my blood, both of which he promises his natural protocol can eradicate. In the meantime, my now functioning gut means I am finally flushing stuff out.
I still have bed days, but I am also aware that I need to retrain my brain into believing that I will recover, which in turn will prompt it to find new pathways to make this happen.
This is called neuroplasticity, and I am sure it is the missing piece of my jigsaw. That, and turning away from the misery forums on my social media feed.
- For more information go to shawellness.com/en
MY LONG COVID CHECK LIST
The sooner you rest when infected, the more likely it is that you will avoid serious illness. Taking vitamin C, lactoferrin, antihistamine (especially Benadryl) and melatonin can help stop the cytokine storm – an extreme inflammatory response.
Pacing is crucial
My rule is ten minutes’ rest for every hour of activity – get a Fitbit to measure this. Sit rather than stand. Lie down instead of sitting. Hydrate with electrolytes.
Boost mental health
We can affect health outcomes by changing our language. Instead of thinking ‘I feel exhausted’, try, ‘I am less energetic than usual’. When you feel pain/fatigue, give it a different name – like ‘my banana’. The Curable app is helpful.
Some antidepressants can help long Covid sufferers with neuroinflammation or insomnia.
Low-histamine diets have helped many. Cut out all processed foods and focus on protein.
- For more information and support, visit covid19criticalcare.com and survivorcorps.com. For a full list of the treatments and supplements Helen has tried, visit you.co.uk