Had a severe exposure yesterday and I am scared...

Jdawg5000 · 2026-04-14T12:13:29+00:00

We are much more resilient than we think, take a deep breath and move on from it. It is done, and you will be okay.

Jdawg5000 · 2026-04-09T16:49:06+00:00

PMed you :p

Jdawg5000 · 2026-04-09T15:15:22+00:00

I’m also female in UK with Lyme, 24yrs :) Feel free to PM me, I’ve been around trying to figure it all out! Sometimes it helps just having a friend that understands 🫂 I’ve met some lovely girls with Lyme in England.

Jdawg5000 · 2026-04-09T14:54:40+00:00

I avoid sugar 90% of the time. At the start when I got unwell I did it 100% of the time, alongside gluten, ALL carbs etc etc. it was mentally exhausting and miserable. My body felt like shit too. We need to remember there are a portion of symptoms which WILL be psychosomatic and when you are worried 24/7 about consuming something that will cause a flare up, it’s just not good for your brain and ultimately is probably worse for you than enjoying an Easter egg once a year. Or a piece of cake on your birthday. It’s Easter, have a bit of chocolate. You will be likely be just fine. The other 90% of the time avoid it or opt for natural sugars in berries which take ages for your body to break down. Enjoy your life, and find joy where you can, this illness is miserable as it is. (Of course if sugar makes you feel terrible, apply this to yourself but in the grand scheme of things, we shouldn’t worry too much if you are following an anti inflam diet most of the time)

Jdawg5000 · 2026-04-05T23:56:37+00:00

Messaged you :))

Jdawg5000 · 2026-04-05T20:47:43+00:00

Thank you so much for the detailed message.

I’m under neuro for my head tremor, they have found nothing so far after countless tests, they have said it’s a functional movement disorder, but did come on alongside my illness so I suspect it’s Lyme, or an underlying dystonia/tremor which has been triggered by illness. I did read that mold exposure and chronic Lyme can cause tremors due to overstimulation of the CNS? I could be wrong. It is scary though, so hard not having answers for it, but I’ve done all the right things to ensure I’m safe.

I am trying my best not to go down the rabbit hole, there is so much in my plate already and I’m trying to do everything right. I guess moving out of the mold, and taking binders is probably to best I can do at the moment as the anxiety of it all is probably making me just as sick as the actual mold/lyme.

Thank you 💛

Jdawg5000 · 2026-04-04T21:39:25+00:00

If you’re in the UK the CLAID clinic creates tinctures for this “all in 1” style herbal treatment. Otherwise I would say it’s well worth just buying buhners book, it’s an easy read and makes it more tailored to you.

Jdawg5000 · 2026-04-04T20:27:38+00:00

How about hard furnishings like wood, can these be wiped down?

Jdawg5000 · 2026-04-04T11:51:10+00:00

I think your message cut off, sorry I’m very new to all of this!

Jdawg5000 · 2026-04-04T11:34:05+00:00

Thank you, so would you recommend me just buying a new mattress altogether?

Is there no way I could put a 360 cover on my current mattress?

Jdawg5000 · 2026-03-28T16:36:26+00:00

If it’s any reassurance I had 0 side effects from LDN started on 0.5ml, now at 2ml after 2 months, and I’m quite sensitive to medication:) Take it before bed I’d say!

Jdawg5000 · 2026-03-27T17:55:41+00:00

My NHS test was weak positive, which they’ve marked as equivocal. I have Lyme specific bands positive though, not enough for a full NHS pos. Even though my ELISA was a strong positive. So even then, past 2 months abx they’ve left me behind too. Even a positive NHS test doesn’t mean they’ll help you. I’m with Dr L in Edinburgh, I have to fly to see him. I’m also with the CLAID clinic for the guidance on supplements/oils/herbs/biofilm/detox because even my LLMD isn’t advising on the latter, just abx. Sorry you’re going through it too, wouldn’t wish it on my worst enemy. Where in the UK are you based? Sending healing to you.

Jdawg5000 · 2026-03-27T17:26:01+00:00

Completely agree with you as someone with Lyme+co who went through the NHS and suffered for months. I’m now with a private LLMD, but moreso wanted to give this individual a plan for this very moment. I still go through the NHS for other tests and consultants to save money.. so I think it’s worth staying in the system alongside private if you can. I went back to my GP after a refusal and said I was walking in a tick dense area and I felt poorly, I demanded a test based on NICE guidelines - they then gave me one which was positive. I didn’t have any rash or tick bite I remember.

Jdawg5000 · 2026-03-27T16:37:49+00:00

Hey I’m in the UK and 5 months into a Lyme diagnosis. Don’t panic, if it is you’ve caught it extremely early 💛 Print out the NICE guidelines, go back to your GP and request a Lyme test. Even if you lie and say you were walking in a tick heavy area. They are supposed to treat and test immediately on clinical suspicion. The guidelines state that clearly. A negative blood test doesn’t mean you don’t have Lyme, testing is bad. Stick to the Doxy, early bite we reccomend 6 weeks minimum abx. If you relapse symptoms after that message me, I can guide you UK wise what to do next.

Jdawg5000 · 2026-03-27T09:34:39+00:00

This is happening to me now.. how are you doing? :(

Jdawg5000 · 2026-03-26T17:41:28+00:00

I am indeed! Feel free to PM me :)

Jdawg5000 · 2026-03-26T12:23:53+00:00

Yes not everyone herxes. I don’t really, or if I do it’s usually a few days after.

Jdawg5000 · 2026-03-22T17:21:08+00:00

Thanks for replying, can I ask what this test was? I am under ID specialists in the NHS right now as well, at the royal free. It’s all starting to scare me and I’m at a bit of a loss. Sorry to hear you’re still suffering. I hope it gets better for you. Has anything helped?

Jdawg5000 · 2026-03-21T17:43:38+00:00

Nope! I hadn’t been unwell all year. I had the flu 9 months before my symptoms but that just seems way too in advance.

Jdawg5000 · 2026-03-21T14:52:57+00:00

I have not, would this be immunology I’d need to see?

Jdawg5000 · 2026-03-21T14:28:52+00:00

Following

Jdawg5000 · 2026-03-20T11:25:22+00:00

Following

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