My long Covid nightmare and how I overcame it: Cambridge patient finally discovers cause of her relapses
A long Covid patient has told of the extraordinary ordeal she has been through with relapses that were destroying her life - and how she finally worked out what was hindering her recovery.
Cambridge business consultant Adelina Chalmers’ story involves healthcare investigations from Cambridge to Romania, spanning two years.
She previously spoke to the Cambridge Independent about it last year for an article that has been read online by 180,000 people and has led to at least 150 people getting help for their long Covid symptoms.
It came after Adelina contracted Covid-19 in March 2020 and then had a suspected second bout around November that year. Following the infections, she suffered from brain fog and breathlessness and had become so weak she was having mobility aids fitted to her home, despite her GP declaring they could find nothing wrong. She even considered ending her own life to escape her suffering.
This all changed when Adelina found that long Covid had contributed to her having iron and B12 deficiencies. And when she began treatment with iron infusions and B12 injections her symptoms lifted.
However, that was not the end of the story – as Adelina later went on to experience terrifying physical “collapses” that at first baffled her doctors. And she has only now finally become completely well after over a year of searching for answers with doctors in Europe and the UK.
Adelina says: “I thought I had cured myself of long Covid last year when I found out that having B12 injections and iron infusions cured my extreme fatigue that had left me unable to walk. But I suffered a relapse last year, which I thought had happened because I had pushed myself too hard with exercise.
“Suddenly, I had severe muscle weakness again, but just for two days this time. And then I’d be back to walking again. This kept happening. I would get the symptoms with about 10 minutes’ notice that I was going downhill and it could last from three hours to three days.”
Adelina, known as the Geek Whisperer in her work, was first struck down with Covid in March 2020. She fell seriously ill with breathing problems and was hospitalised. But she appeared to have made a full recovery after three months, taking up a new exercise regime in June and returning to work in July.
However, Adelina began to feel ill again in November 2020, which she now believes was a second Covid infection. She started having migraines and feeling exhausted and in February 2021 she suffered a complete collapse.
This saw her unable to walk, feed or wash herself and she only survived thanks to round the clock care from friends.
Adelina said: “Over-night it got really bad and was much worse than Covid itself. I thought I was going to die.”
After speaking with a doctor friend in Europe, Adelina learnt she should have her iron and B12 levels checked following Covid, as deficiency in these was being noticed in other long Covid sufferers. She had the tests done through her GP surgery but was told they had come back normal.
Barely conscious for 23 and a half hours a day most days, she even considered ending her own life.
Then, tests ordered by Dr Andrew Klein, at the Nuffield Hospital in Cambridge, showed that her levels of iron and B12 were at the lower extremes of what was considered “normal” and these levels were not high enough for her body, so were causing symptoms.
He explained the reason the GP could not find something wrong was because the 211-911pg/mL “normal range” for B12 is unrealistic for some people. At the time, Adelina’s B12 was at 256. And while typical ferritin levels range from 41-400 mcg/l, Adelina’s was at eight.
Dr Klein explained she was suffering from pernicious anaemia. He said: “We think that long Covid may be an autoimmune condition where patients have the Covid virus and it triggers their immune system in an abnormal fashion.
“The body then attacks itself and then in so doing that perpetuates the symptoms of fatigue, exhaustion, shortness of breath, being unable to exercise and so on.
“Along with the autoimmune disease you get poor absorption from the stomach of essential nutrients such as iron, vitamin B12, vitamin D and selenium. Basically the symptoms of long Covid are the same as iron deficiency and B12 deficiency – fatigue, exhaustion, shortness of breath: all the symptoms that Adelina suffered.”
After treatment for these deficiencies last year, Adelina immediately felt significantly better and was even able to ride her bike instead of spending all day in bed. It was at this point she first spoke with the Cambridge Independent about her “cure”. Since that article was published, she says she has received “more than a 100 calls’’ from fellow sufferers and Dr Klein reveals he has treated many patients as a result of the article.
Dr Klein said: “Long Covid appears to cause a wide range of problems, of which pernicious anaemia is just one. For those people who suffer iron and B12 deficiencies following Covid this treatment can really help.
“I’ve treated around 150 patients as a result of Adelina’s article and many have improved following the treatment.
“Long Covid is a spectrum of many different things. So all of them are part and parcel of it, whether it is lung damage or heart problems, for instance. They’re all different. And so it’s not just one condition with one diagnosis and treatments. Each patient has to be looked at differently, have their blood levels checked, and be treated appropriately. So there are a proportion of patients that have the B12 and iron problems and when you give them treatment, they get better, which is hardly surprising, really. ”
However, despite her treatment, Adelina started to have brief relapses last year in which she would suffer the same long Covid symptoms she had experienced before and her doctor was baffled by them as other people were getting better.
“I would experience severe muscle weakness that lasted anything from three hours to three days. It was so bad that I couldn’t feed myself again. My boyfriend had to feed me and take me to the toilet,” she said.
“I could speak, but very slowly and it was very slurred. Also one side of my face would droop. The collapses were terrifying and I felt I was losing my mental ability and was going to a dark hole and feeling very depressed again. This started happening once a week and then settled down to every two weeks.
“I had no warning when they would come. Sometimes I would be driving and would have to pull over and park somewhere because I could feel going down and down. I would literally have to sleep in my car while my boyfriend caught a taxi to me so he could drive us back.”
Adelina was puzzled about why she had relapsed. She had been treating her B12 and iron deficiencies with vitamin injections and iron infusions.
“I spent about £15,000 in the UK on doctors trying to understand why this was still happening,” she said.
She was being injected with B12 every other day, but was still having symptoms of deficiency.
Adelina then heard through a friend that doctors in her native Romania may be willing to investigate.
“She booked appointments for me with everyone – neurologists, cardiologists and pulmonary experts to pursue everything,” says Adelina.
While there, doctors carried out a barrage of tests.
“I showed the doctors pictures of my face when I had one of these collapses. They initially thought I had experienced a temporary ischemic attack which is like a stroke and can lead to a more serious stroke,” said the business consultant.
“So they gave me an emergency MRI scan of my brain to check for strokes and to see if I needed to be put on blood thinners. But they found nothing. They also did carotid artery scans and just couldn’t find anything. So they were baffled and they thought I might have a neurological disease called myasthenia gravis, triggered by Covid. They knew of a case caused by Covid in Germany. Eventually tests ruled that out too.”
The neurologist in Romania then had one last suggestion, which turned out to be correct.
“He called me to say I may be suffering from hyopokaelemia episodes, which could be caused by low potassium levels linked to the amount of B12 injections I was having and my insulin resistance,” she says.
“My potassium level was low but on the border of normal. The neurologist said he could imagine if it dropped lower than that I would have a crisis, which would show up as severe muscle weakness, slurry words, being unable to blink properly, and would explain why my face fell. So I thought this is pretty crazy, you know, that it could be such a simple solution. So I started drinking electrolytes every single day that had potassium and magnesium in high doses. And the crashes disappeared. I couldn’t believe that this simple thing had been having such a massive impact on my life.”
Meanwhile, that was not quite the end of the story because, while Adelina had now stabilised her potassium level, she found that her iron levels were dropping, despite the infusion. There didn’t seem to be an explanation for this. The only change she had made after recovering from long Covid initially was to restart taking a drug called Metformin, which was used to control the insulin resistance she suffered as a result of polycystic ovary syndrome.
“I’d been taking Metformin for two and a half years before I became ill the first time,” said Adelina. “When I mentioned to Dr Klein I had restarted the medication he knew what was going on and explained that recent studies had shown Metformin can reduce iron and B12 absorption by the body.”
Dr Klein said: “There has been a drug warning about Metformin recently by various government agencies. So you have to be careful with Metformin and B12. It stops you from metabolising B12 and absorbing it so you can’t use it properly.”
And he explained about the potassium deficiency Adelina suffered: “There are some people like Adelina where all sorts of electrolytes are disturbed, such as potassium, magnesium, zinc, selenium, but again, each individual patient is different, and they may need to take other supplements as needed. Potassium is a common one that can cause a problem.
“Basically, if your stomach is not so good, then you don’t absorb lots of different things.
“I think Adelina is quite unique in that she’s been really quite unwell for a long period of time while lots of people have got better [with the injections] and have not been as poorly as her. I’d say she’s been quite exceptionally poorly and has done a lot of work to try and get herself better. I think it shows that every patient is different. It’s very difficult to generalise.”
Following Dr Klein’s advice, Adelina came off the Metformin and began a low carbohydrate diet to tackle the insulin resistance. She also found alternative treatments to take instead of Metformin, which were supplements called Berberine and inositol.
Now Adelina, who helps science and technology companies communicate effectively, is cautiously optimistic about the future.
“I feel like I’m 99 per cent recovered,” she said. “I have my energy back and the collapses have stopped happening. It seems as though I have found the right balance of supplements to support my body. I really wanted to explain to people the the first treatment was not the end of the story for me but that now I’m finally feeling well. It just took a lot of work to get there.
“The impact of long Covid on me over these past two years has been enormous. My business went from six figures to basically zero overnight when I got long Covid. I was lucky I had some clients that paid me on retainer and I did receive some government payments but I wasn’t earning and basically my business has been on hold for the last two years. I think I worked three days in the whole of 2021. Now I’m finally returning to work.
“I’m still scared – I have to be honest – that one day I’ll discover that my symptoms are due to something more than all this. But I feel that if I was able to overcome the nightmare last year, where I
was just comatose for 23 and a half hours a day, I feel I can overcome anything now.”
