Lyme Disease - Is That What We Really Have?

This group was recently set up on Facebook - facebook.com/groups/NeuroLyme/

In it's introduction the founder says this (and I hope she doesn't mind me copying and pasting)

" Lyme can lie dormant for up to 30 years. It can be passed by arthropods (ticks, mosquitoes, fleas etc), sexually transmitted, in utero (pregnancy), breast milk, blood transfusions, organ transplants (blood is NOT screened for Lyme or co-infections) You DO NOT need to become deathly ill or have a bullseye rash when you are bitten to have Lyme. It is stealth, not easy to diagnose or treat."

The founder is a member of a FB adrenal group that I belong to. She and a fellow member that I was chatting to a few night's ago are firmly of the belief that most people suffering from thryoid/adrenal/auto-immune problems actually have Lyme disease and possibly co-infections.

Her arguments are strong. She believes that only a few labs do effective Lyme testing. She recommends one in Germay and Igenex in the USA.

I can't comment at this stage beyond suggesting that anyone who is interested should ask to join the group. I had an NHS for Lyme done last Nov, when I requested it. Unfortunately no trace of it can be found - it seems to disappeared en-route to the lab. These things happen, so I've made an appointment to have it done next week. I have to pay for it - £49. The receptionist at my surgery said "It's £49 if you don't have symptoms". My brain did back flip and refused to even enter the conversation.

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  • Well, whatever she says, the Antibodies will remain -so you will get a useful result. Hopefully not lost AGAIN !

    I may still pursue this myself- too many coincidentals for me to live with happily under current symptoms.

  • Yes me too my immune system has been off since been bitten 3 years ago, now everything out of kilt. Had the nhs Lyme test was told normal. X-

  • Yes, this was true for me... I focused on the thyroid for YEARS and I have Hashimoto's but it was only when I saw my doctor in America that Lyme and a multitude of co-infections were picked up and I am now being treated out here with intravenous antibiotics...the thyroid was only a tiny piece of the puzzle for me. I have no memory of a tick bite and I didn't have the classic bull's eye rash.. the NHS ELISA Lyme test was negative but when I had the more sophisticated Western Blot test done at the American lab I was VERY positive. Definitely worth bearing Lyme in mind and remembering that the NHS testing isn't always reliable. This is a great resource and they have a patient email service: lymediseaseaction.org.uk and I help to run another UK based Facebook support group called Lyme Disease UK.

  • Good to hear of your progress, Natalia.A great pity we are still behind in the UK on this [growing] problem.

    The Bulls Eye rash is all very well, but when many don't get a rash like this ,it can become a misleading talisman.

    I had a round, pea sized growing slowly red raised mark like a strawberry birthmark [closest thing that I know to it] after a bite from a viscious local 'Wareham' bug in Poole Harbour a few years back.

    Anti-bios cleared it after I got them a few weeks later.

    I've had other bites that just blew my knee up overnight.[Maybe spider- at the time?]

    I wouldn't be in the least surprised to find I had left over antidodies to one or other Borellia species, somehow!

    I will find out, [well a 64% of detection if figures here are right] chance of detecting it with a test

    due on Weds.

    Do I think I have Lyme now- I hope not, but it's sure worth checking.

    Private test route will hopefully be a good option.

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