Lyme disease- what's your experience?

[Lymq]

Hearing a lot more about Lyme disease recently and it seems somewhat controversial. Lots of alternative medicine diagnosis and treatments. People really affected by the treatment or the disease, lots of fear. High profile cases

Anyone had it and can share their experiences?

It's affecting me personally, which is why I am curious to hear your experiences

[tompointer]

I think I had it earlier this year. I was feeling poorly. Very tired with flu symptoms. A few days later I developed a huge bullseye rash (confirmed by out of hours gp) and was prescribed a week of antibiotics and told to see regular gp for the rest. Regular gp wouldn’t prescribe me anymore antibiotics, she said a weeks course is fine.
I was still feeling ill after a week so I bought my own antibiotics and took them for the recommended 3 weeks. I improved during the last week and have no lasting effects.

[Mousse1990]

My dad had it in 2018. He was very ill from it. He couldn't sleep and had pain that moved around his body. He should have been put on antibiotics sooner, but gp didn't bother. I told him I thought it could be lyme disease. He told gp who got all funny about it, although did the test for it anyway. He never had the rash. Eventually, his second blood test showed that he had it, and he was put on antibiotics. He was never the same again, though, always much weaker. Soon after, he found out he had lung disease, which he possibly already had, although I highly suspect the lyme disease exasperated it. He died last year from the lung disease.

Pretty shit illness all in all. I'm not sure what is supposed to be controversial about it, though?

[Lymq]

@Mousse1990

My dad had it in 2018. He was very ill from it. He couldn't sleep and had pain that moved around his body. He should have been put on antibiotics sooner, but gp didn't bother. I told him I thought it could be lyme disease. He told gp who got all funny about it, although did the test for it anyway. He never had the rash. Eventually, his second blood test showed that he had it, and he was put on antibiotics. He was never the same again, though, always much weaker. Soon after, he found out he had lung disease, which he possibly already had, although I highly suspect the lyme disease exasperated it. He died last year from the lung disease.

Pretty shit illness all in all. I'm not sure what is supposed to be controversial about it, though?

I'm really sorry to hear that. It sounds like an awful experience.

So there appears to be a lot of unorthodox but expensive treatments and tests for Lyme disease that you can buy online. People have been dying because of some of the dangerous treatment options (alternative medicines). Some respected medical professionals disagree with the ethics and science behind these treatments and tests available

I've heard that Lyme is being "popularised" amongst conspiracy theorist and far right on the internet. But I'm not sure if this is true.

I suspect it's a very real problem for people, poorly understood by professionals. And as a result, the gap is being filled by dangerous charlatans offering expensive "treatments"and misdiagnosing people.

It's affecting me personally, so curious whether it's impacting others. Sorry to hear it is

[ithinkicanithinkican]

There seems to be actual Lyme disease, from a tick bite, and then there's 'chronic Lyme disease' which is the one with all the weird conspiracy myths. It's big in the US, there's a whole industry that has sprung up about it. My sister was caught up in all that - it was quite sad. It felt like she was looking for something to explain her general malaise, and got sucked into all that. She had some pretty weird ideas around health generally.

[jackles]

I live in the area with the highest incidence in the UK (Purbeck). As far as I know I have never had it, though I have to pull one or more ticks off myself almost every day between March and October.
I know several people who have had it - for instance a friend up the road has chronic Lyme disease which gives him digestive and movement problems - I don't know what treatment he's had but he's been like it for years.
When my next door neighbour caught it (this was at least 20 years ago - IIRC she was in her 50s) her GP didn't realise what it was. She started getting bad pains in her joints and was referred to a specialist for rheumatism. He get her tested for Lyme - she was given a long course of antibiotics (6 weeks I think) and recovered completely. She didn't have the bullseye rash but recalled afterward she'd had a big red circular patch on her leg which was completely painless and not itchy.
The main problem is spotting the immature ticks - the nymphs. They are really, really tiny and very difficult to remove in one piece.

[Palacelife]

My DD had Lyme disease last year. She was unwell with flu like symptoms and then I saw that bulls eye rash on her arm. Luckily the doctors took it very seriously, she had to have bits of the tick removed and three weeks antibiotics
then a few weeks ago I noticed a funny red (what I thought) was a spot on my leg, which was unusual for me. If I pushed it it bled a bit and it was similar to my daughters
I started feeling hot and cold and headachy and put two and two together a bit later, so now on the three week course of antibiotics and not enjoying it as it ruins my stomach

[Tired545]

Sorry to hear that OP. If you are in the acutely phase/ recently bitten my advice would be to treat it as aggressively as you can. They’ve now acknowledged that covid can stick around in your body long after the initial infection, and cause ongoing autoimmune and other chronic problems. Whilst bacterial not viral, the effect of Lyme is the same. I got diagnosed and treated too late as I didn’t seek treatment after the initial bite and because the doctor queried why I still had active infection showing in blood tests long after I was bitten. I am still dealing with the fall out 10yrs later, in the same way that some covid patients will be too. Chronic Lyme is not a fake diagnosis but it’s certainly not one that the NHS recognise or treat.

[Bluefell]

I’ve had something that exactly matched Lyme symptoms, the rash was a red circle but not bullseye. It took 4 months for the GP to agree to test me and the result was negative. So exactly like Lyme but not Lyme? The GP insists the test was correct and that’s the end of the matter.