In early June I went to Exmoor, and our dogs got covered in spider like ticks. Fast forward a week and I had an itchy bite on my back, which then had an expanded area of redness. It wasn't a bullyeye, and it wasn't oval with clear boundaires, but it was definitely expanding but in all different directions at difference pace. I was put on three weeks high dose amoxicillin because of tic exposure.
I didn't have any other symptoms other than the bite (no flu like illness), and I felt fine on amoxicillin, until the last but one day where I started to get burning in the palms of my hands (so bad it work me in the night). This then led to a tingling feeling in my hands and feet, and I now have this in my legs and arms too, as well as muscle spasms in my legs. All very distressing.
My blood was tested for all the routine stuff, plus vitamin deficienices - all fine. Lymes test is still pending although seems to be taking ages. The receptionist reported that my IG antibodies was normal, but I don't think this was lymes specific, I think it was just general levels. My knowledge on this is pretty basic!
They have started me on doxycycline now, for another three weeks, and I'm feeling pretty awful. Tingling etc is all still there, all over my limbs, only now I have chills too. Could this be a herx?! They've also referred me to an infectious disease consultant who I see in two weeks time.
Understandably I'm worried, although I don't really understand this turn of events as I had antibiotic treatment within days of watching a rash get bigger so I did everything that they advise you to do. I also keep reading that my symptoms are 'late stage lymes' but I'm about 6 weeks on from seeing the rash so this seems to be moving pretty fast.
Does anyone have any personal experience they can contribute?!
Thank you in advance!
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Hello1986
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I am sure your story resonate with other members and you have many questions that I can only try to answer to the best of my ability - I have some questions for you too, so I can better understand your situation.
Can I ask you a question, why did the first DR give Amoxicillin when the NICE Guidelines (recently updated) say that if signs of bullseye rash (EM) even if faint that treatment of Doxycycline should start immediately.
Sorry to hear you are now experiencing ongoing symptoms but glad the GP has done a Lyme test despite the fact that Lyme testing in the UK is not as accurate as abroad. It's a start and if positive they have put you on Doxycyline now and the symptoms you are experiencing could well be 'die off' as the toxins release and maybe even Herx too. I obviously cannot definitely say it is but let's hope it is killing the Borrelia bacteria.
I would not be afraid to ask the GP for another course after this one as research (not UK) is pointing towards longer courses being needed or even other medications like Tetracycline being used instead. Also, I heard many in the Lyme community say to reduce diary products whilst on Doxycycline as apparently this can make it less effective. Do let us know what the infectious disease consultant says? Is it Dr Dryden they have referred you to?
As to reading about Chronic Lyme my advice would be try not to 'google' too much as the internet can be a great source of information sometimes and other times you cannot always trust what you read. We must always question the source so we can truly evaluate the information plus this could be worrying you unnecessarily. Many within the Lyme Disease community use alternative treatments like Infrared Sauna, RIFE Machine and various other things to help symptom control (myself included)
Personally, I would wait until the test comes back and keep us posted, so we can all try to give advice as to the best course of action based on the results.
Hope this helps
LWLD
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