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AMA

I have chronic Lyme disease AMA

62 replies

IDontLikeOreos · 14/09/2020 13:44

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.

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Redshoeblueshoe · 14/09/2020 13:48

Wow I didn't realise it could be so bad. Did it take a long time for you to get diagnosed ?
I always assumed it was one of those things that you got antibiotics for and that cured it.

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BeingATwatItsABingThing · 14/09/2020 13:50

I don’t have any questions but I had Lyme disease a few years ago. I was lucky in that the antibiotics kept it at bay but I still show mild symptoms of it sometimes.

I hope you’re ok and things get better for you.

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FourTeaFallOut · 14/09/2020 13:51

Ok, I'll wade in with bare ignorance. Do you have to treat all tick bites as a risk and seek gp treatment or just if you have a red mark and begin to feel ill? Are ticks carrying Lyme's disease equally distributed around the country or are there hotspot? Did you have the classic symptoms? Did the GP take you seriously?

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GrumpyMiddleAgedWoman · 14/09/2020 13:55

Did you spot the bite? I had a bite on my hip recently which didn't itch so might have been a tick but it didn't develop the bull's eye rash. Keeping alert though!

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GrumpyMiddleAgedWoman · 14/09/2020 13:56

And also, thanks for starting the thread. Chronic Lyme is something I only became aware of recently and since I am outdoors in the countryside a lot, it's something I am now more alert to.

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IDontLikeOreos · 14/09/2020 13:56

@Redshoeblueshoe Thanks for your interest. It's a common misconception that Lyme disease is easily treated with antibiotics, but studies show that around 20% of patients suffer from long-term symptoms. This risk is heightened if you're not diagnosed straight away (I wasn't diagnosed correctly for almost 18 months after the bite.) The risk of suffering from long-term symptoms is also heightened if the tick gave you multiple infections. It's a lesser known fact that ticks in the UK carry other infections apart from Lyme disease, and the tick I was bitten by gave me two other infections. I now have two of the infections under control following long-term antibiotics and herbal treatment to boost my immune system, but I haven't been able to get the 3rd infection under control unfortunately which is why I'm still suffering.

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IDontLikeOreos · 14/09/2020 14:00

@BeingATwatItsABingThing Thank you. Sorry to hear that you still show mild symptoms of it sometimes. Have you ever considered taking herbal medicine to boost your immune system? If you only have mild symptoms occasionally, that would likely keep it at bay.

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RHTawneyonabus · 14/09/2020 14:02

I’m sorry to hear about your awful experience.

My son contracted Lyme in the summer he was very poorly 6 weeks or so after the tic bite. 3 weeks of antibiotics and he seems much better. But it sounds like it could reoccur? We are due a follow up appointment at the hospital this week is there anything we should ask them. Thanks so much

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RepeatSwan · 14/09/2020 14:03

Did you spot the tick, was it attached?

I am quite paranoid about ticks and force the kids into long trousers for walks etc. But maybe this is pointless.

Hope your recovery continues, you have been badly affected Flowers

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SwanShaped · 14/09/2020 14:05

How did you first know you had it?

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SwanShaped · 14/09/2020 14:06

I mean the disease, not the tick. And how was it diagnosed after so long? How do you know it’s not ME? Thanks.

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IDontLikeOreos · 14/09/2020 14:12

@FourTeaFallOut Thank you for your questions. I'm very happy to answer them. The general advice is that if you've been bitten by a tick, you should look out for any symptoms that may develop and look out for any rash that might appear (which can take up to 3 months). If a rash does appear, GPs are obliged to provide at least 3 weeks of antibiotics. The problem is that not everybody with Lyme disesse gets a rash (I think I remember it only being about 40% of people). I'm grateful every day that I did get a rash, as I wonder if I'd ever have worked out I had Lyme otherwise! It does make you wonder how many people in this country have been misdiagnosed with other things (at various points I've had pretty much all the symptoms of M.E, MS and even Motor Neurone Disease at my worst).

Ticks carrying Lyme disease can be found in every county across the UK, even in urban parks and back gardens. Hotspots are Scotland and the area around the New Forest, but you can be bitten anywhere (I was bitten in London).

My symptoms were classic, but I thought I had the flu. I went to the doctors after two weeks of 'the flu' not going and they gave me two weeks of antibiotics strangely enough as they had no idea why the flu was lasting so long. That was enough to keep my symptoms down for a while, although I had terrible depression and anxiety which I'd never had before. A year later, I was hit by later stage symptoms such as joint pain, severe memory loss, seizures, vomiting etc.

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IDontLikeOreos · 14/09/2020 14:17

@GrumpyMiddleAgedWoman No worries, I'm glad I can help to raise awareness - I would do anything to prevent others going through the same as me.

I didn't spot the bite, but I did spot the rash. I showed a GP but it was misdiagnosed as ringworm.

Sorry to hear you recently had a bite. The rash can take 3 months to appear, so just keep an eye out for that and any symptoms that might develop. I'm sure you'll be fine though - you have to be pretty unlucky to get Lyme!

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BeingATwatItsABingThing · 14/09/2020 14:19

[quote IDontLikeOreos]@BeingATwatItsABingThing Thank you. Sorry to hear that you still show mild symptoms of it sometimes. Have you ever considered taking herbal medicine to boost your immune system? If you only have mild symptoms occasionally, that would likely keep it at bay.[/quote]
I haven’t, no. I will look into it though.

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EasilyDeleted · 14/09/2020 14:22

Thank you for posting, my daughter and I have both had tick bites this summer which we have removed promptly and no symptoms so far but it is a worry. I'm sorry it had affected you so badly. Thank you for posting, I don't have any specific questions but it's good to raise awareness.

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IDontLikeOreos · 14/09/2020 14:25

@BeingATwatItsABingThing There's a patient forum run by the charity Lyme Disease UK where patients share advice on herbal medicines etc. It might be worth you joining. Search for Lyme Disease UK Online Community on Facebook.

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IDontLikeOreos · 14/09/2020 14:27

@RepeatSwan Thank you. I think I've answered your question above. It's a good idea to take precautions such as wearing trousers, tick repellent, tucking trousers into socks, etc, so it's not pointless at all. Then you're doing everything you can.

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RingORingORoses · 14/09/2020 14:36

How do you remove a tic correctly?

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IDontLikeOreos · 14/09/2020 14:40

@RHTawneyonabus Thank you. I'm sorry to hear about your son, but it sounds as if he had the antibiotics promptly which is brilliant and gives him the best possible chance. It is possible that it can reoccur and the NHS don't test for the other infections the tick can transmit (or provide any treatment for it, which can be a problem). As mentioned to other posters above, it might be worth you joining the patient forum hosted by the charity Lyme Disease UK, as it may be a good idea for your son to take herbal medicine to keep his immune system up. Healthy diet lifestyle and regular exercise can also help keep the immune system robust.

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BeingATwatItsABingThing · 14/09/2020 14:43

Thank you @IDontLikeOreos

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IDontLikeOreos · 14/09/2020 14:44

@EasilyDeleted Thank you. I'm so pleased you and your daughter haven't had any symptoms so far. I think it's only around 10% of ticks that carry Lyme disease, so I'm sure you'll both be fine.

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NachoNachoMan · 14/09/2020 14:48

Thank you for posting, @IDontLikeOreos. Do you mind me asking what you expect from your condition in the long term?

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IDontLikeOreos · 14/09/2020 14:51

@SwanShaped I think I've answered part of your question above. I know it's not ME because the symptoms started almost straight after the Erythema Migrans rash I had and spending time in a place known for ticks that carry Lyme disease. The symptoms currently remaining for me are very specific to the infection I have which is called Bartonella Henselae ( I have severe shin pain, pain in the neck and the soles of my feet, vertigo, migraines - all hallmarks of this infection). I also test positive for this infection via blood test at the leading labortary in America.

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IDontLikeOreos · 14/09/2020 14:55

@RingORingORoses Ticks should only be removed using either fine tipped tweezers or a tick removal tool which is specific for the job. You can find more information here:

lymediseaseuk.com/tickremoval/

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IDontLikeOreos · 14/09/2020 15:03

@NachoNachoMan My hope is that I'll go into remission at some point. I try to stay as positive as possible. I've just started a new treatment based on the latest research into the remaining infection I have. If I can go into remission, there's always the chance it can come back though, so I will need to take herbal medicine and follow a healthy lifestyle for the rest of my life. After suffering for so long though, that would feel like a very small price to pay!

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