I have chronic Lyme disease AMA

[IDontLikeOreos]

Bitten by a tick in the UK 6 years ago and have been housebound ever since with many debilitating symptoms. Lost my job, many friends and have spent thousands on private treatment.

Lyme disease is a very misunderstood illness and there seems to be a lack of education amongst the general public, so I thought it might be helpful to start a thread here. If you'd like to learn more, feel free to ask me any questions.

My son got bitten by a tick last year, on his neck, thought it was dirt!
Removed it with a tweezers.
GP prescribed antibiotics. He did get a rash about two weeks later, but thankfully no issues since.

Thanks for this thread op. It's good to spread awareness.

So sorry that you are suffering from this, very informative thread, thank you x

@TheFlyingStork That's fantastic you're 90% recovered from ME; congratulations! Do you know what led to your recovery?

It's my opinion that there is often an infection behind ME, but it needn't be Lyme disease which causes it. As I'm sure you know, there are viruses like Epstein Barr and other bacterias like Chlamydia Pneumoniae which could equally be a trigger. I think hopefully Covid is showing what can happen when the body is unable to overcome an illness; the Covid long-haulers are doing a great job at raising awareness since many are suffering from ME symptoms in the aftermath.

You could speak to your GP about seeing whether you've ever had Lyme. The blood tests aren't always reliable unfortunately though. Flares with Lyme disease are always possible and tend to happen when the body is under stress (either physical or psychological). Perhaps you could consider herbal medicine to keep your immune system up to prevent a flare? As I'm sure you know from ME, pacing and healthy lifestyle are also very important.

@user1496146479 Phew, thank goodness! High five!

@AntiHop @Theradioison Thanks, both!

Amazing you got treatment straight away! Even now, there still seems to be a lot more awareness of Lyme in US than here in the UK.

I wasn't a bit surprised I got treatment before the test results were back. I had typical Lyme symptoms beyond the rash so it was almost certain that I had it. And the treatment was very low risk. I'd had doxycycline before with no ill effects. I'm an HCP and after a few years reading about treatment from the NHS here on MN I think that doctors here just treat more aggressively than yours. Also here there's no disincentive to the GP to write you a prescription since it's your insurance that pays for it.

If you don't know about it already the Columbia Lyme Center is a fabulous resource for information and research. Columbia University Medical Center is one of the finest in the US. They also do remote appointments for second opinions and telephone consultations.

Columbia University Medical Center Lyme and Tick Borne Diseases Research Center

It’s so nice to hear someone as knowledgeable as you OP; we sadly became too familiar with Lyme too after one of our DC was bitten and I still can’t read all this as it felt so overwhelming at times. It’s a horrid and complicated thing and stressed me out how different doctors didn’t agree.

Like you we were lucky to have the rash and in fact eventually a positive test on the nhs but getting a diagnosis took too long and me suggesting it after my own research (our London gp sent us to a dermatologist Which wasted important time!). We had some very stressful months but eventually a full recovery and do hope you do too.

Hi @IDontLikeOreos, thanks for a very informative post. I'm wondering if I might have contracted Lyme a long time ago - I got very sick whilst travelling in Chinese countryside, with a red circular rash on my abdomen, and ever since have suffered with fatigue, weakened immune system and regular bouts of feeling absolutely awful. I dont suppose you have any recommendations for private testing, do you? I am going to try my GP too but they are a bit overwhelmed at the moment so I figure private testing might be a quicker result. I'm in London. Thank you!