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.

What I would say about checking for them is that both the ones on me and DD were tiny, really tiny, smaller than I would have expected, little black specks. We have kept tick removers at home for years because we are in a fairly high incidence area so we knew what to do, they are cheap from pet shops, it's well worth having a few (I keep one in my handbag, one in our home and travel first aid kits, always take them on holiday).

@EasilyDeleted That's such a good point; thank you for sharing. Yes, the nymphs can be as small as a poppy seed which is terrifying! Or as big as a baked bean after a full meal.

@IDontLikeOreos thank you, and fingers crossed for you 😊

Thanks for replying.
Sorry to hear you recently had a bite
I'm not sure it was a tick, but I'm not sure what else it might have been (not itchy... spider?) This is not really tick country - the dogs don't pick up very many, just one every 5-10 years, even though I know we sometimes let their parasite treatments run down a bit.

And yes, I'm keeping an eye! Posts like yours help me to not forget about it, so thanks again.

Has it been confirmed with antibody test and subsequent Western Blot test?

I can’t believe the amount of people I’ve come across who put any and all unexplained symptoms down to ‘Chronic Lyme Disease’ with no clear evidence. Not saying that’s you but it’s a personal irritation of mine. We have an epidemic of self-diagnosed ‘Chronic Lyme’ cases.

@BewilderedDoughnut The NHS test for Lyme disease is notoriously problematic. Unfortunately I was not tested until 18 months after I was bitten, by which time the NHS test is often not very effective.

Instructions from the manufacturer of one of the test kits used by the NHS (the Viramed Borrelia Virastripe IgM test kit) state ‘IgM antibodies usually appear 2-3 weeks after onset of the disease for the first time. Antibody titers often decline several weeks to months after convalescence.'

My GP agrees that I have Lyme disease based on the EM rash I had which she has seen with her own eyes (this is diagnostic of Lyme disease in itself). She also agrees that my symptoms are in line with the Lyme Disease diagnosis.

My GP has privately told me that she wishes she could do something to help me, but the NICE guidelines doctors are governed by will not allow it. We see each other regularly and she has even passed on advice from me about herbal treatment to other patients she has who also have long-term Lyme. It's a London practice with around 10 doctors, and she herself has at least a dozen patients all in the same position as me.

@BewilderedDoughnut As a side note, I also have (had) friends who didn't believe in 'chronic Lyme disease with no clear evidence'. They're no longer friends for obvious reasons.

Many, many people with Lyme disease are still able to get confirmation through testing. I’ve done many hours of research on this and there is no way I’d be treating without a confirmed diagnosis. Although I agree the EM rash can be confirmation in itself but not everyone develops it.

The issue with reliability of testing is often due to people testing too early having not built up enough antibodies (therefore negative IgM). IgG antibody testing is a good option for those looking to rule it out after some time has passed.

I’m not disputing you’re dealing with Lyme/Co-Infection related issues but a diagnosis of ‘Chronic Lyme’ is widely rejected because the evidence doesn’t support it it’s existence.

"there is no way I’d be treating without a confirmed diagnosis."

I highly doubt that somehow. I wouldn't be alive without the treatment I've had. The disease had spread to my heart and brain; antibiotics saved my life. Trust me, if you're that ill, you honestly don't care about a test result (which is unreliable anyway). You're willing to try anything.

"I’m not disputing you’re dealing with Lyme/Co-Infection related issues but a diagnosis of ‘Chronic Lyme’ is widely rejected because the evidence doesn’t support it it’s existence."

Perhaps you're not up to date with the latest research? The latest study carried out by Johns Hopkins University estimated that 10-20% of Lyme patients suffer from Chronic Lyme Disease. Scientists now believe that one of the reasons chronic Lyme disease exists is because conventional antibiotics are not powerful enough to kill all traces of Borrelia within the body and the remaining microbes – known as persister cells – repopulate and spread to other tissues. There's also the question of co-infections (other infections carried by the tick). In the case of Bartonella Henselae, recent studies have also shown this can be a persister bacteria.

Here are a few of the studies:

bmcmicrobiol.biomedcentral.com/articles/10.1186/s12866-020-01777-9

www.jhsph.edu/news/news-releases/2019/three-antibiotic-cocktail-clears-persister-lyme-bacteria-in-mouse-study.html#:~:text=A%20new%20study%20from%20researchers,symptoms%20in%20a%20mouse%20model.

How come it took 18 months to get diagnosed properly if you had the rash? Did you have to pay private for the test from America? I live in an urban area with lots of ticks and it’s one of my big worries.

Where do you actually get the tick remover tool from? I have just come back from two weeks in the Highlands and am paranoid about Lyme disease. Someone I know has had it and it’s had seriously consequences for her.

@SwanShaped The rash was initially diagnosed as ringworm by my GP. I didn't think anything of it for 18 months, until I saw John Cauldwell on TV talking about his son with Lyme disease and how he had the rash. My symptoms at the time were exactly the same as JC's son (severe stomach problems, debilitating fatigue, severe depression, anxiety, severe memory issues). By the time I had all these symptoms, I had moved to a different GP practice who didn't have the record of the rash and I hadn't thought to mention it until then. Fortunately I still had an outline of the rash which was visible and I had also previously taken photos of it which I showed to my new GP.

Yes, you have to pay for the tests from the American lab. Lyme disease becomes extremely expensive to treat once it's in its later stages and the NHS is therefore unable to help (we're talking thousands, not to mention loss of income since most chronic sufferers can't work at all).

If you live in an area with lots of ticks, are you taking precautions against them when you spend time outdoors? That's the most you can do, otherwise a lot just comes down to luck (as with most things in life!). I seem to remember that only around 10% of UK ticks carry Lyme, and the main thing is that you're aware of it (if I had been, things would have been very different for me).

@WatershipDown7 You can buy an O'Tom Tick Twister online. Othersise fine tipped tweezers will do the job too. Yes, Highlands is a tick hot spot, so good idea to always take precautions. Tick repellent too.

Where do you actually get the tick remover tool from?
Pet shops have them or amazon.
O'tom Tick Twister amazon.co.uk/dp/B0089BOK12/ref=cm_sw_r_cp_api_i_tv8xFbM5CF242]]

Thanks @KitchenConfidential

I had Lyme in the early 1990's. I saw the classic expanding ring rash and got in to see my GP a few days later. He drew blood for the test but started me on a course of doxycycline immediately, which was the sensible tx. That resolved it. I'm in New York and I think we had more experience with Lyme earlier than you did in the UK.

Thanks, that’s helpful to know that it can be misdiagnosed a ringworm. It’s very urban (a city) where I live but my kids must have had about 10-15 ticks between them. From the local park that has lots of dogs and also some deer. Luckily I’ve always spotted the tick within a day and I think Lyme is less likely to spread if the ticks are removed promptly. Sometimes they are so so tiny. Like a tiny dot. One was in between rolls of fat on my daughter’s neck (toddler) so I didn’t spot it until she looked up in the air. I get very worried about Lyme at times but equally I think that it’s such a busy park, and the ticks are so tiny that lots of people must get ticks that they don’t know about and be ok.

While I’m advertising for Amazon ;) if you do live in tick heavy areas (like I do!), may I highly recommend Smidge as an anti tick repellent? I high season I also have a squirt around my ankles and any exposed skin. They even have a pocket size version that constantly lives in my dog bag just in case.

Smidge Insect Repellent amazon.co.uk/dp/B00413715E/ref=cm_sw_r_cp_api_i_Cp9xFb386XAA7]]

Sorry to highjack your thread OP. I’ve seen how devastating it can be.

I feel for you, OP! A friend of mine is currently recovering from this disease. Like you, it took her a long time to get a diagnosis, at which point she was seriously ill. Thankfully she has had effective treatment and is able to live pretty normally once more.

@MissConductUS 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. All of the leading doctors and researchers seem to be there too. More funding.

@ChaToilLeam I love hearing success stories; it's what keeps me going. So pleased for your friend. Thank you for sharing x

What do you think about celebrities like Yolanda Hadid who have been very vocal about this?

@Macaroniinapot I'm really pleased that celebrities are speaking up because raising awareness is so important. So many people have never even heard of Lyme, so celebrities give a voice to the disease. I also think it's very brave of them, because inevitably you're judged and questioned by many people for having this illness. A lot of people just don't believe you. Before Justin Bieber 'came out', all the papers blamed his weight loss and acne on drugs, when he was secretly battling Lyme. Poor guy.

Thanks for this thread, OP. I had ME/CFS for best part of 10 years. I’m 90% recovered now but still have very occasional moments. I was never tested for Lyme but could have ticked off all the symptoms you mention. Would there be any benefit in having a test to see if I had it? Can it flare up again?