Fortunately, by the time of her diagnosis, my sister (her mum) and I had begun to treat her with a nutrient cocktail that included high doses of thiamine and she was already showing signs of a positive response. We had started down this path after I had come across an article by Chandler Marrs on Hormones Matter back in April 2019, I ordered Drs. Lonsdale and Marrs’, Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition and read it from cover to cover in a matter of days. I am not a medic. I read with Google by my side, gradually learning what words such as syncope and pseudohypoxia meant. The more I read, the more convinced I became that thiamine deficiency and dysautonomia described perfectly what was happening with Rebecca. I noted that alongside the many symptoms described that matched Rebecca’s, HPV vaccination was thought to be a factor in precipitating full blow thiamine deficiency. Indeed, as I read, it became clear that this CFS had not come out of the blue.
Childhood History of Unrecognized Thiamine Insufficiency
Rebecca had a history of weird and seemingly unconnected symptoms throughout her childhood. As a young child, she had episodes when her lips went blue, though no heart problems. She was a sweaty sleeper. She had always had word finding difficulties, and regular mild tummy aches. She had been ‘sensitive’ to stimulus such as noise, strong tastes and smells and even as a toddler would frequently withdraw to her bedroom for downtime. She had a diagnosis of childhood migraine at age 9 and a brain scan done at 10 years old revealed lots of ‘white matter lesions’, though the doctor was unable to interpret what this might mean other than they were common in migraineurs. She had never been the most energetic child despite coming from a sporty family and needed frequent rests and naps after school and at the weekend to manage the demands of her life. When she contracted viruses, she would take longer than her peers to recover from the same virus. Aged 10, she had episodes of blurred vision, unexplained by visits to the opticians or specialist doctors. Alongside all of these symptoms, she had also been diagnosed with vitiligo and had light therapy for 6 months at age 9 years old.
Enter the HPV Vaccine
Our current understanding is that this situation of low level puzzling symptoms may have continued, however in October 2018 she had her first and only dose of the HPV vaccine. This, we think, given an existing thiamine insufficiency, may have been enough of an insult to her system to precipitate the debilitating symptoms that medicine has labelled CFS. Only weeks after the HPV vaccine, she was struggling to attend school with all the symptoms described above. Frequent visits to the doctors as the symptoms progressed led to various prescriptions for antibiotics, anti-nausea drugs, pain killers, a triptan for migraine, and on diagnosis of the CFS, Rebecca was offered anti-depressants. The antibiotics made her tummy pain and discomfort worse. The anti-nausea drugs had no effect at all. The triptan made her nausea worse. Three days of full doses of nurofen, paracetamol and codeine did not work to take the pain away either. We chose not to take the consultant up on the idea of taking anti-depressants. Instead we did our research, found, what we believe was the root cause, and began thiamine therapy. Rebecca’s recovery began soon after.
Time Course of Recovery
- On 7 May 2019, Rebecca took her first 50mg dose of thiamine and we gradually increased the dose. Her symptoms did get worse initially, exactly like the refeeding syndrome or paradox described by Lonsdale and Marrs.
- On 16 May, my sister had a consultation with the naturopath Elliot Overton who suggested adjustments to the type and dose of thiamine.
- On 28 May, Rebecca started 150mg of allithiamine in three separate doses each day.
- On 29 May, one hour after her first 50mg dose of allithiamine, for the day Rebecca got out of bed briefly and ate. Over the next few weeks we noticed her mood and activity levels went up and down with the thiamine doses.
- On 28 June, we noted that Rebecca was more emotionally stable. She was more socially interested and her appetite and sleeping were improving.
- On 10 July, the thiamine dose now increased to 400mg across the day.
- By 18 July, we felt that Rebecca was turning a corner, she was waking more easily in the morning, joining in with family activities and had even been observed running in the garden with the dog. The time to recover from activity decreased and at times she became more animated and talkative than ever.
Where We Are Now
It’s now September and the start of a new school year. Rebecca is taking 900mg of allithiamine a day. In August she managed to participate gently in two family breaks, including some beach time and short walks. A couple of weeks ago she spent some time playing energetically with her family in their pool, interspersed with rests. Her mum and I are so cheered to watch her have fun and laugh again. Rebecca reports that she no longer craves pasta and her mum notices that she sleeps earlier and wakes less frequently during the night. Rebecca still needs to rest and pace herself, and sometimes she will overdo it and need a day or two for recovery, but we are confident in that recovery now. Rebecca has this week returned to school part time.
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