Lyme Disease: Bloody Patients And why they’re always wrong.

Lyme Disease: Bloody Patients And why they’re always wrong.

Many thanks to Richard Wilson for sharing his wise word from his substack musings.


The first time I didn’t have Lyme disease was back in 2016. I took a tick bite with a classic circular Lyme rash into my local doctor’s surgery and was told it wasn’t Lyme because it was the wrong sort of round. It wasn’t a bullseye.

There then followed several years of not having Lyme disease, despite symptoms that suggested otherwise. So I was sent for scans, endoscopies top and bottom and saw specialists in everything except Lyme.

Controversially, I wondered out loud about Lyme (bloody patients with Google, eh?) and, over the years, asked for 2 tests which came back negative. Nobody told me how inaccurate the Elisa test can be (15-25% false positive/negative).

Then, early last year, my aching guts put me in front of 2 different gallbladder specialists. Why two? Because our chaotic health system sent me to 2 consultants, about a week apart. Both agreed that my gallbladder was full of stuff called sludge which explained all my ills. So it was true: I didn’t have Lyme Disease (again). I had sludge.

Unfortunately, the only way to get it removed, without waiting several years for a National Health Service operation, was to pay. So I saw a private surgeon, who confirmed that my bolshie gallbladder was indeed to blame for all my ills (see! no Lyme!) and, for the price of a small car, duly whipped it out.

I woke up post-op with no gallbladder, considerably poorer and with a full set of Lyme symptoms.

A few months later I paid, privately, for a 3rd Elisa Lyme test. This one came back positive. OK, almost 7 years had passed, but it seemed urgent to me. Although, as I soon learned, not to my healthcare providers. Which is where my problems now coalesced. My doctor’s surgery is guarded by reception staff whose mission is to keep the Bloody Patients at arm’s length. They told me that because I had arranged the test privately, I couldn’t see my own doctor and would have to wait 30 days for a phone call with somebody else’s. The official Lyme guidelines say that Lyme should be treated immediately. So emails were exchanged which included words like ‘unethical’ and ‘breach of guidelines’. My doctor intervened, a blood test was booked for the next day, and within 48 hours I had another positive Elisa backed by a positive, confirmatory Western Immunobolt. Suddenly I had Lyme. It was official, something would be done and I was going to get better. The sense of relief was enormous.

Ah. Not quite so fast, pal.

I was prescribed 4 weeks of Doxycycline and then 4 weeks of Amoxcyline. My symptoms subsided, somewhat.

Within weeks it was all back and worse than before. My blood pressure went through the roof, I was covered in a skin rash and my heart was intermittently, rhythmically deranged. I felt like shit most of the time, and it could get especially bad at night. Sleep became elusive. Since then my blood pressure has dropped and become erratic while my heart is more regular, but little else has improved.

My doctor is a decent, overworked man who I rather like. He referred me to the Infectious Diseases unit at the Big City Hospital. Sounds good doesn’t it? Experts. What could go wrong?

It turns out that this specialist unit seems to have a Lyme Guru romper room where they share spliffs and blend mind-wave communications with milk-shake flavours.

These experts reached out to me via the cosmic aura of the aether-net. They didn’t need to see or talk to me. They’re so good at this that I didn’t even notice they’d made contact. Anyway, they inhaled long and deep, and then they sent this to my Doctor:

“Mr Wilson has had adequate treatment for possible Lyme disease and further antibiotics would not be beneficial. There is no need for our service to see him. If the referral to the Care of the Elderly Team does not help then please consider referral to the ME/CFS service.”

This is real. Seriously. It’s not a joke. The appropriate anagram is: What a bunch of Fickwuts. Curiously, there are no amusing anagrams of the word ‘morons’. And how was I to know that if you ask a gaga old geezer (me) for an anagram of 2 random words like S**t*m**d and Hospital the answer would come back Medical and Negligence. Crazy! Bloody Patients, eh?

I think there are 4 reasonable comments they could have made, but didn’t:

First, that the bacteria are dead and I’m suffering from the damage they did. It’s going to be unpleasant, but my condition will improve. 2nd, I’m experiencing an overreaction by my immune system. 3rd, tick bites very often deliver bacterial co-infections. Let’s test. The 4th is a possibility acknowledged by leading medical academic institutions: The Lyme bacteria may have survived. With time, the little bastards can dig in deep and are very hard to get at (medically). If so, further antibiotics are suggested, even by our regulatory authorities.

Unfortunately, the Big City space cadets have now tied my doctor’s hands. So I’m back on the referral treadmill. I have 3 new appointments upcoming in the next month or so:

  1. I’ve been booked in to see a Gallstone specialist. It seems my gallbladder may be playing up.
  2. Next will be the Care of Older People and Specialist Falls Clinic. When they ask me why I’m there I’m going to have to say I don’t know. Which gets me halfway to an Alzheimer’s diagnosis.
  3. I’ve been referred to a Gastro-Intestinal clinic. Perhaps to investigate the missing Gallbladder? I may never know because the health service ap is blocking the booking.

It should all be funny. But isn’t and I’m stuck.

A lot of people have emailed me to say I should fly to the US and see a specialist. I would, but it’s very expensive and the gall bladder surgeon’s partner is now driving around in my savings.

Bloody Patients, eh? I really should be more grateful that, for example, I haven’t got Lyme Disease. And, in the last 8 years, I only had it for 10 weeks. Phew!

Don’t you just love a happy ending?

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Many thanks to Richard Wilson for sharing his monthly prose on North Devon Angling News. I would urge all who tread upon our green and pleasant land to read this article. I have had many encounters with ticks over the years. When fishing some of our overgrown rivers I have returned home later in the day to find these nasty critters sinking there teeth into my skin. Its a bit like Russian roulette some are loaded with deadly lymes disease whilst others are not carriers. I have heard of several people who have been infected and we constantly remove them from our cat. Others find them in abundance upon their dogs. Awareness is undoubtedly a major factor in getting treated but thats not always straight forward as Richard explains below.

Lyme Disease: Running Riot

I’ve got it, you may have it too.

This is a good time to be a tick with Lyme Disease to share. You and I may bemoan the weirdness of the weather, but ticks love it.

As the world gets warmer and wetter, they’re partying. 10 years ago, in the wooded valley I call home, we had two distinct tick seasons – from mid-March to June, and a shorter burst in the autumn. Last year I picked up my first in early February and my dog had his last in November, and they continued without a break right through summer.

Ticks are the original muggers. They lurk on the tips of grass fronds, often in and around woodland, waiting for an unwitting victim to brush past. They’re looking for a free meal which, for us, turns into a lose-lose transaction. The tick gets our blood and we get Lyme Disease, a bacterial infection with very unpleasant consequences.

I’ve been paying attention to this because I’ve just been diagnosed with Lyme. Worse, I’ve had it untreated for about 8 years, which is why I can also say that most doctors wouldn’t recognise it even if they caught it, and that I wouldn’t wish it on anyone.

There are two basics to understand about Lyme Disease, and they come hand-in-glove: An early diagnosis is both essential and very hard to get. Speed is everything because, given the chance, there’s no organ in your body or corner of your central nervous system that the Lyme bacteria won’t vandalise.

So how do you know if you’ve been exposed? A lot of people never see the tick that infects them. It can latch on at 1mm long, infect and then fall off. Others gorge themselves, growing bloated with their head buried in your flesh. The longer they stay, the greater your risk of infection. Thankfully, dog tick removers do a great job for us too.

The official advice is that the first visual clue of infection is a circular red rash around the site of a tick bite. This is where the medical profession starts to screw up.

In 2016 I had a tick bite and circular rash which I took into my doctor’s surgery. The nurse said it wasn’t Lyme (it was solid red from centre to edge and didn’t match the bull’s eye photo on her screen). No treatment was offered and, back then, I was as clueless as the nurse. I now know that anysort of rash or blistering (no rash) that might be tick-related should be treated as Lyme Disease. I also know that many Lyme cases never show a rash or blisters.

For patients and doctors, it gets worse. Blood tests, if done at all, deliver false positives and negatives in equal numbers in up to 25% cases. So even if a doctor suspects Lyme, and mostly they don’t, the test results are very likely to be wrong.

The next problem is your doctor. Once the bacteria get to work, your symptoms will be mistaken for heart disease, flu, a mild stroke, dementia, diabetic neuropathy, fatigue syndrome, Bells Palsy, arthritis, all manner of intestinal and organ malfunctions, viral infections, Parkinson’s, slacking and so on. Victims are constantly exhausted and, in my experience, at times look unevenly grey. This last blotchy observation is not in the textbooks – it should be.

There is no slam-dunk symptom for doctors to see that couldn’t be something more familiar. And to get an idea of what’s familiar, a quick look around their waiting room is revealing. The majority of patients are obese and bring diabetes, coronary heart disease and the such-like. Those who are not obese are mostly old with all that goes with advancing years. There are a small number of children with sniffles and one or two adults who’ve lost arguments with power tools. There are super-size chairs, but no dispensers of free tick removers and no warning signs or leaflets on how to avoid Lyme. It’s invisible.

Stand in most doctor’s surgeries and you’d never guess that Lyme Disease is the most prevalent insect/parasite-borne disease in North America and Europe and one of the fastest-growing infectious diseases in both. That’s big. According to the CDC, almost 500,000 Americans get it every year. Many, many more in both North America and Europe are infected but undiagnosed. There’s a lot of trouble coming for a lot of people.

Here’s why it took 8 years for me to get treatment: As said above, I first went to my doctor’s surgery in 2016 with a circular red rash caused by a tick. Patients treated with antibiotics at this stage mostly complete a fast 100% recovery, which is why medical guidelines say treat first and confirm the diagnosis second. Antibiotics are very low risk, but the consequences of delaying treatment are serious. In my case, medical ignorance delivered the wrong diagnosis.

The trouble started slowly. Within 2 years the fatigue, aches and pains were worryingly intrusive. Multiple trips to the doctor, scans and tests revealed nothing. Increasingly worried, I remembered the tick rash and asked for a Lyme test. It came back negative. Nobody told me how inaccurate the tests were, and still are.

Fast forward through many more scans, tests, a gall bladder removal that was supposed to resolve my woes (and didn’t), a 2nd negative Lyme test and more. I was a minor medical mystery. Then, this autumn, I paid for a 3rd test and it came back positive. The next day my doctor re-tested with both the standard LISA test and a Western Immuno Blot test. Both came back positive. 3 positives in a week, including a Western Immuno Blot, is as good as a positive diagnosis gets.

Such a late discovery brings problems. Given time Lyme bacteria also attack and disrupt our Autonomic nervous system which controls all those things that just happen without conscious thought: Blood pressure, breathing, heart rate, digestion and so on. They also disrupt our short-term memory, which is why, if I stop to make a coffee, I may have to remind myself that I’m writing about Lyme. That’s very disconcerting. Weirdly, I don’t forget why I culled an adjective or shunted a sub-clause down a paragraph. It’s also why my blood pressure can veer from 180:140 to 80:50 and my heart sometimes sounds like Animal, the Muppets drummer, playing deranged rhythms with one hand. And as medications are added to treat the symptoms, so cause and effect get complicated.

If getting a diagnosis is difficult then getting rid of Lyme is even harder. Symptoms can persist long after the antibiotic course is completed and the longer you’ve had the disease, the longer they’ll last. When this happens researchers are very careful to refer to Post Treatment Lyme, and not Long-or Chronic-Lyme. This may sound like semantics, but it’s important.

I have been treated with 2 courses of antibiotics (the sledgehammer and then pile-driver versions) and it’s extremely unlikely that any of the bacteria have survived this onslaught. They’re dead. So now I’m living with the damage the Lyme bacteria have done, especially to my nervous system. I felt like sh*t then, and still feel it now. Mending this could take years.

Imagine a human-scale version of a deserted battlefield. The war is over, the armies have gone home and all that remains is a landscape of devastation and dysfunction. Eventually, the land will recover, the trees will grow back and any unexploded munitions will be removed. How long will this take? We don’t know. Welcome to Post Treatment Lyme Disease.


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A Footnote: Whole-genome sequencing of Borrelia burgdorferi, the tick-borne bacterium that causes Lyme Disease, has shown a huge range in variety and complexity. This is thought to explain the multiple Lyme disease symptoms, from severe arthritis in children to fatigue and debilitating joint, neurological, and cardiovascular impacts in adults.

For further reading, I recommend the Lyme specialists at Johns Hopkinsand Harvard.

Soon there will be a vaccine (it’s in Stage 3 trials). And about time too.