tick-related disease testing

[Blown2CV]

having had loads of gut issues over the last few years, i've had quite a bit of investigation and ruled out the things that the NHS can detect. There was an assumption that it would be likely I had something like Crohn's disease, but the investigations came up negative.

Now... I was bitten by a tick when walking in scotland around the time of the start of these issues. I was tested at the time with what the NHS tests for things like Lyme disease can handle, and they came up negative.

I've since found out that not only can some tick-related infections cause Crohns-like symptoms, but also that the NHS tests aren't very good or holistic at detecting the broader spectrum of tick-related infections.

Does anyone know of any private clinics where i can get a really comprehensive and reliable set of tests done? Or any other pointers?

[orbit123]

I tested positive for lyme earlier this year (NHS lab test). I live and walk in quite a tick heavy area of Scotland. I'm ultra careful though and still can't quite believe I had a bite as I had no signs. Tick numbers are surging with global warming, lack of bracken control and the "no-mow" initiatives by councils in parks etc.

Testing is a complex area from my understanding as lyme has many mini variations in the bacteria. I'm not sure getting enough funding. I had thought the NHS labs were pretty good though and did a kind of 2 stage test.
Medichecks can test for the antibodies but I've really no idea if that is good. Maybe a reassurance to have a 2nd test.

Whilst I know it only takes one bite, people I know will have had maybe hundreds of tick bites over their lives with no problems. The tick needs to be infected and it needs to transfer it. Statistically the risk from a single bite should be low but does sound worth bottoming out if timing fits.
Many people do not get a rash and many GPs seem quite unaware of symptoms and complexity.

A course of heavy duty antibiotics has got me back feeling OK again for now. Although I had no rash I had flu like symptoms and clear result of a bacterial infection plus obvious environmental exposure.

Good luck!

[Hugo Stiglitz]

I always wear pants or tights under shorts and especially now as we are coming up to a warm damp month.

I was tested a few months ago- get thee to the GP dude. Hope all is OK.

On a side note, what is your alcohol consumption and stress levels like?

[Blown2CV]

Hugo Stiglitz said:

I always wear pants or tights under shorts and especially now as we are coming up to a warm damp month.

I was tested a few months ago- get thee to the GP dude. Hope all is OK.

On a side note, what is your alcohol consumption and stress levels like?

went to a GP at the time. Came up negative but they gave me antib's anyway.

Alcohol no more really than a couple of beers a week, average. Stress a bit worse than the average person, I'd say but then it's impossible to objectively measure that.

[FiF]

OP assuming you have looked at this https://www.lymediseaseaction.org.uk/about-lyme/te... which lists a few laboratories.

Testing through GPs in UK is hit and miss, more miss than hit. Lots of accounts around where people have been bitten, classic rash and symptoms, but just get repeatedly fobbed off. Not tin foil hat situation either.

[vindaloo79]

Blown2CV said:

went to a GP at the time. Came up negative but they gave me antib's anyway.

You are lucky they took this approach.

Years back I started to feel like I was dying after being very active and in my twenties. Took myself to A&E and they asked many worrying questions (AIDS,HIV, Leukemia and so on related).

They sent me home two days later, I was feeling cloudy headed, sweating profusely, lights hurt my eyes, every knee and toe joint aches, all lymph nodes swollen massively, headache of death. Basically I was just wanting to collapse on the floor and lay there. (Covid was like this for me one of the times but brief).

I suffered like this and visited the doctors by taxi and insisted they see me. Was working away in Glasgow and mountain biking 3-4 times a week.

Anyway I googled in lighter periods of suffering and decided I had either Weils disease or Lymes.

I insisted hard and asked for the anti biotics and they absolutely refused as I never found a tick bite. I pushed harder and they referred me to centre of tropical diseases a couple of days later IIRC.

Anyway I was tested, it was Lymes, I eventually got antibiotics, within days the symptoms eased. Oh and I saw bulls eye rings days after that appointment, all over me, just not so strong.

I have never been as fit since, but at least normality generally resumed. they later got in touch and I gave a blood sample to allow them to calibrate a new testing machine and got paid a couple of hundred for the pleasure.


Edit it just reread your post, the Lymes antibiotics haven’t helped you. At least they gave you them.

TLDR you could ask Glasgow tropical diseases dept for the medical company name they test with.

I wish you luck in getting to the bottom of this and a speedy recovery.

Edited by vindaloo79 on Monday 28th August 11:40

[jmn]

Just been diagnosed as having Lyme's Disease. Now on a 3 week course of Antibiotics.

These will destroy both good and bad gut bacteria so it is worth taking a Prebiotic.

[jet_noise]

Had my first ever tick bite on Thursday last week.
Didn't find it till Saturday night

Saturday felt ill - nausea & headache. Bit of a stomach upset, not unusual (diverticular disease) but coincidental.
Ah! That's what the itch is. I've a tick!
Out you come. Bugger, mouth left behind.
Gosh it itches.
Swolen and red but no classic rash (yet).
Continued feeling ill, lessening over Sunday.

Felt fine on Monday but went to doctors anyway to get the mouth out.
Somewhat precautionary (I've another condition or two) but we agreed doxycycline would be sensible.

[ChevronB19]

Interesting. I got a tick bite in June, no bullseye or any other symptoms other general tiredness (which may relate to something else) but I still have a hard, red itchy lump.

I assume it is probably time I should see the doc, as it isn’t going away.