Lyme Disease: Bloody Patients

And why they’re always wrong.

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 Dr 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. But never mind, whatever the problem really was, we had ruled out Lyme.

Then, early last year, my aching guts put me in front of 2 different gallbladder/GI specialists. Both agreed that my gallbladder was full of stuff called sludge which explained my ills. So it was true: I didn’t have Lyme Disease (again). I had sludge.

The only way to get it removed, without waiting too long for a National Health Service operation, was to pay. And, to put it bluntly, I was feeling shit so I saw a private surgeon who confirmed that my bolshie gallbladder was indeed to blame for all my woes (see! no Lyme!). For the price of a small family car he 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 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 some of 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. Maybe the somebody-else was waiting 30 days for mine?

The official Lyme guidelines say it should be treated immediately on diagnosis. 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 3 weeks of low-dose Doxycycline. My symptoms subsided, somewhat. I have since learned that this was the appropriate treatment for someone with freshly contracted Lyme. Disseminated Lyme, as my version is called, requires a much higher dosage.

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 rhythmically deranged. Sleep became elusive. Since then my blood pressure has dropped and become merely bewildering and heavily medicated, while my heart is now a tad syncopated (cool, huh?). I also have a raft of problems that to me, a layman, seem symptomatic of a dysfunctional autonomic nervous system (all the stuff your body does without conscious effort: breathing, for example)

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 has a Lyme Guru romper room where they share spliffs and blend mind-waves 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:

“(The Patient) 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. And how was I to know that if you ask a gaga old geezer (me) for an anagram of 2 random words like Southmead and Hospital the answer would come back Medical and Negligence. Crazy! Bloody Patients, eh?

I think there are at least 4 reasonable lines of inquiry they might have followed (in addition to too little Doxycycline):

First, that the bacteria are dead and I’m suffering from the damage they did. This seems a longshot given some of the symptoms above. 2nd, I’m experiencing an overreaction by my immune system (this is above my pay grade). 3rd, tick bites very often deliver bacterial co-infections. Let’s test. The 4th is reported by multiple leading medical/academic institutions: The Lyme bacteria can survive antibiotics. With time, the little bastards dig in deep and are very hard to get at (medically). And mine have had time. About 8 years of it. If so, further antibiotics are suggested, even by our cautious regulatory authorities.

Unfortunately, the Big City space cadets have now tied my doctor’s hands. So I’m back on the referral treadmill in the hunt for a reason for why I have so many evolving Lyme-like symptoms. 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 to blame.

2. Next is 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 it isn’t and I’m stuck.

A lot of people have emailed me to say I should fly to the US and see a Lyme 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 no longer have Lyme Disease. No further treatment is needed. Phew!

Don’t you just love a happy ending?

Elderly Geezer in Need of Geriatric Care.

18/06/24: Update: I’ve just had a call from the Bristol Royal Infirmary to book me in for a pre-procedural consultation. They tell me I have gallstones and that they are expecting to remove my Gallbladder. Sigh.