I’ve been thinking about writing about my latest health, er, journey, for some time, but that journey has been so extreme I simply wasn’t able to. And I’ve wondered, how in fact can any of us truly understand the inner experience of another person? How can anyone put words to this experience in a way that can reach not only the logical brain? Is there a point to trying? I think of the blog I wrote in 2022 titled The Unendurable. Little did I know there was worse coming down the line for me.
And then I picked up The Wounded Storyteller by Arthur W. Frank. I’ve only just started it but it feels clear that there is worth in telling the story, if only for others facing similar ordeals. Frank quotes someone who lives with chronic pain, Gail Garro:
“And all these people in pain… all these people with aches and all these people suffering. We walk in different dimensions. We have access to different experiences, different knowledges. And there are so many of us, too. What would happen if we all knew what it really meant and we all lived as if it really mattered, which it does. We could help the normals and the whitecoats both. We could help them see that they’re wasting the precious moments of their lives, if they would look at us who don’t have it. I’m convinced that only sick people know what health is. And they know it by its very loss.“
And so, here is the tale of my ordeal.
As many of you know, I started late-stage Lyme antibiotic therapy in January under the guidance of a private consultant here in the UK, with much thanks to generous donations. I preceded this therapy with some weeks of a high level nutrient protocol also suggested by the consultant, and again, covered by a very generous loan from a lovely friend.
Interestingly, I was in fact doing a lot better than ‘normal’ in November and December, partly perhaps because of the nutrient protocol. I began the first antibiotic on January the 6th, and the second two weeks later. I was doing fine, no side effects other than perhaps a slightly disturbed bladder.
On January the 20 I started taking the second antibiotic twice a day, as per the protocol.
A week or so prior I noticed I had a canker sore on the very tip of my tongue. I hadn’t had one of these for decades. I also had an HSV2 infection, which isn’t unusual for me, but it was on the severe side.
On the 23rd I felt like I was ‘coming down’ with something. Just general malaise, headache, weakness. Nothing totally out of the ordinary, other than I hadn’t felt this for many weeks. The following day, I was far, far worse. I had the most violent nausea I have ever experienced. Sea-sick nausea, the type that takes all your energy just to endure. My temperature was going up and down all the time, and my heart, while regular felt like it was pounding in my chest like a drum. I had a headache, I felt incredibly weak, and due to the 24/7 nausea, I could only eat the simplest of meals.
I thought I had Norovirus. But I had no diarrhea, and no vomiting. The nausea was worse when lying down, I tried my two prescription nausea meds, but they did nothing. I messaged my GP practice asking for a stronger nausea med, and was told to just go to the pharmacy and get something there, which was useless advice as they would not give me a stronger anti-nausea medication without a prescription and I was too ill to get there anyway.
The nausea was utterly crippling. It’s perhaps my least favourite symptom (hence having two prescription meds for this anyway). But to have it 24/7 for four days? Plus all the other awfulness?
I told myself, I need to go to Accident and Emergency. I didn’t. It was the weekend. The hospitals here are packed with people with Norovirus and Covid and all else. The thought of waiting hours to be seen while experiencing what I was experiencing was unthinkable.
After the four days, the nausea abated, but none of the other symptoms. My stomach was sore, and the exhaustion crushing. I had an ache in my kidney area. My bladder felt inflamed. I was hot and then freezing. Often very dizzy. I might have an hour or so of relative strength, but the rest of the time was spent bedridden, my heart pounding away preventing any kind of rest. And then I noticed another symptom: my mouth was continually filling with saliva. And, about an hour after eating – no matter what I ate – I would have a sensation that I was going to vomit, but didn’t.
I had one evening where this sensation of being about to vomit was so strong, and combined with feeling I was going to faint, my face hot, my head whirling. It was indescribably awful. Again, I thought, I need to go to Accident and Emergency. Once again it was the weekend, and after about half an hour the ‘attack’ settled.
Another strange symptom was incredible hunger, and the sensation that someone had scooped out my stomach with a spoon most of the day, regardless of what or when I ate.
Retrospectively, I wish I had gone to hospital. But perhaps I’d have had the same treatment I had from a GP I will tell you about later.
I also had a second HSV2 infection. Very unusual for me, to have two back to back. Some of my symptoms could be attributed to this, the malaise, but none of the others.
I then noticed I had developed a weird rash of flat red spots on my thigh.
I began to assume what was happening was related to the antibiotic protocol. Either side-effects or a herxheimer (Jarisch Herxheimer) reaction – or both. A herxheimer reaction from antibiotic protocol for Lyme is the result of Lyme spirochetes being killed off, creating inflammation, in particular for cytokines, and if someone cannot clear these dying bacteria /toxins well, the situation can be extreme, and even life threatening.
I had tried to get hold of my consultant but it was the weekend. I decided on Saturday the 1st of February to stop both antibiotics.
Then, the next day, eleven days from when my ordeal started, I noticed my urine smelled diabolical, and I was exceedingly faint. It was a Sunday. I prepared an overnight bag and called 111 (the ‘sorting’ number to provide urgent medical advice and see if you need to go to hospital). They put me through to an out of hours Doctor. We discussed at length the pros and cons of going to accident and emergency. He could understand my reticence. He suggested I bring a urine sample into my own GP practice the following day, and go on an antibiotic specifically for urinary tract regardless and to see if I could see someone there that day. He sent a note to my GP practice to this effect.
So to great exhaustion on the Monday I take the urine sample and come home, awaiting the initial results and when I could have what they call an “emergency same-day GP”, not my own doctor, that is impossible these days. I got the appointment, so trekked out, the most activity I had done for two weeks. The initial test suggested ‘possible’ infection, but the proper lab test results would take a week. The emergency same-day GP was lovely. But he could do nothing for me really, other than prescribe a UTI antibiotic. Once again we discussed the pros and cons of going into hospital. He said, and wrote in my notes, this is a very complex case. He suggested I see how I do on the antibiotics and he was able to make me another appointment with a GP in the practice for the following Monday.
I felt slightly better, but not much. Extreme malaise, exhaustion, the mouth filling with saliva, the pounding heart, the sensation of an inflamed bladder, the horrible sensation of about to vomit after eating. I honestly wasn’t sure I did have a UTI, I know them well from decades ago. I decided to stop the UTI antibiotic after 5 days as I was not improving in any way. I spent most of the time in bed.
This whole period was the most unwell I had ever felt in my life. I do not say this lightly. I’ve had acute kidney infections. Tick bite fever. Walking pneumonia. Epstein Barr Virus. Mumps as an adult. Chicken Pox as an adult. Covid last September, which I thought at the time was the most sick I’d ever been. But nothing, and I mean nothing, compares. I was incapacitated entirely, unable to do anything much at all, unable to think properly. Overcome with one symptom and once it abated another would arise.
And all the lying in bed made my sciatic pain much, much worse. I did my best to take care of myself, and even managed to teach my Art of Therapeutic Writing workshops because for the short time they lasted, I could feel like a person, rather than a set of debilitating symptoms. But any activity meant a very severe crash afterwards.
I lost two kilos over these three weeks. Two kilos I could not afford to lose as I am already extremely underweight.
I finally had a consultation with my consultant. He believes I experienced an extreme herxheimer reaction, the worst he’d seen. It is probably impossible to know one way or the other (side effects or herxheimer or both), but when I finally got the lab results back from my urine and they showed no infection, it seemed likely he was correct, as he had described to me that Lyme herxheimer reactions can affect the sacral plexus. My consultant is going to liaise with his Lyme specialist in Germany and come back to me with an alternative protocol, possibly largely herbal based (I had previously said no to a herbal protocol, because I’d had two of these in past years to no effect). He also told me all was not lost, that the fact I had the reaction proves that I have embedded Lyme in my body.
On Monday the 10th February I had the GP appointment the emergency same-day GP made for me. If you follow me on Facebook or Instagram you will know how that went. Essentially she did not ask any questions but ticked me off for asking for blood tests as she thought the private consultant should be organising these (disregarding the fact that my GP, the head of the practice, was fine with me doing this), said nothing about my pounding heart and the other symptoms and told me the saliva was a non-medical issue and I should see a dentist. She asked me if I was ‘into wholistic health care’ or words to that effect, and I was so stunned at her lack of care I just said “Yes,” instead of pointing out that the way she was treating me was not wholistic. I left in tears.
I am slowly, very slowly on the mend, nearly a month later. Throughout this time and prior to the protocol I have been taking pre and probiotics.
I have so many feelings around all this. I am absolutely terrified of re-experiencing what I experienced, to the point of even thinking maybe I don’t go on any protocol at all. I keep thinking about how much better I was doing just a few weeks ago. That although it was still a limited life, with exhaustion and other symptoms, I can live that limited life. It’s not so bad.
I feel terrible about all the money donated by so many lovely people for a potentially undoable protocol.
That I might need more money if I do decide to proceed.
I feel confused. But mostly I am in fear. I know this fear doesn’t serve me, not my mental nor my physical health. I am meditating, and doing all the vagus nerve settling I can manage.
Also quoted in The Wounded Storyteller is Jean Améry:
“I had grasped well that there are situations in life where our body is our entire self and fate . I was in my body and nothing else…My body was my calamity. My body …was my physical and metaphysical dignity.”
Another feeling I have is guilt – here I am, quoting Jean Améry who survived Auschwitz. I think of all the terrible things going on in the world. All the people who are and have suffered far worse than me.
But I try to tell this story. Is there any meaning in it? Perhaps one day I will understand. Perhaps one day I will put together the threads in a way that is more than a list of symptoms. Perhaps someone might stumble across my words here and feel not so alone in their own calamity.
I think of trees. I think of leaves.
I try to remember there are people out there who love me.
Thank you for reading, as always, if you got this far.
Update March 15: If you would like to know what happened next… read Stopping the Fight
Previous blogs of mine on my physical situation:
My Late-Stage Lyme Treatment
My Late-Stage Lyme Diagnosis
The Art of Illness: Part Two
The Art of Illness
Finding Home
Doctor, Doctor
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible
Sandra Jensen 