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I managed to get bitten by a tick on my leg and got the classic lymes disease symptom of the large red ring around the bite site. I saw a doctor and was prescribed a long and large dose of antibiotics (21 days 3g amoxicillin/day) and had no symptoms or ill effects while under the treatment. About a week after the antibiotics finished I have developed arthritis in my back, feet,wrists and elbows, plus sore muscles which has been diagnosed as post lymes syndrome. There seems to be very little treatment options and I have been taking several supplements:
Fish oil tabs
Vit D & B12
Probiotics
Tumeric
Plus pain relief when it gets bad, plus seeing a physio for manipulation of the sore joints. Any other treatment ideas out there that people with Lymes have had success with?
Not sure about post lymes but it took me 6weeks, maybe a bit more to feel ok from starting antibiotics. I thought it was taking too long so asked for a lymes blood test at 6 weeks but that came back negative then I got better anyway.
How long has is been since starting the antibiotics?
Bugger.
I've had Lyme (no "s") Disease twice as a result of tick bites and both times it was shifted via the Amoxicillin. Any subsequent aches and pains I just put down to old age!
Amoxicillin side effects can include the aching joints and muscles that you mention. You've obviously had a hefty dose which wouldn't help
I was wrecked after a similar dosage, not Lyme related though. Practice recommended good quality probiotics and they did appear to make a significant improvement.
Finished the antibiotics about 6 weeks ago and no Lymes symptoms while on those, but only after I finished them. I've been on antibiotics before and never had any issues with them, although this was a fairly hefty dose of them.
yeah that sounds like double the standard dose I think.(not a Dr)
Nhs website says side effects can last a couple of months so maybe you are unlicky
Guideline allows for further course of different ab. Look up NICE guideline and show to GP.
Fingers crossed it's just needing some time and/or the side effects. Probably worth getting in touch with the GP just in case they want a blood test though. Hope you feel good soon.
Edit - ^ CG has better advice if there are recommended follow up options. That wasn't available when I was treated.
Usually doxy is the first choice so presumably there was a reason for choosing another. This may be useful:
https://caudwelllyme.com/lyme-disease-info/tips-on-taking-doxycycline
Really, the sooner you have a second course the better.
I'd be wary of taking @cinnamon_girl's advice on vaccines given her covid asshattery and propensity for conspiracy (they won't know if it's safe for years, it's an experiment, they might not release safety data anyway!)
But I would be going back to my doctor anyway and asking for further bloods and follow up - with the nice info she's provided 🙂
I’d be wary of taking @cinnamon_girl’s advice on vaccines given her covid asshattery and propensity for conspiracy (they won’t know if it’s safe for years, it’s an experiment, they might not release safety data anyway!)
Don't believe I've said any such thing and am not a conspiracy theorist. We all make our own choices but the coercion used was off the scale.
On topic: blood tests for Lyme disease are unreliable and they can't tell whether or not you have a curent infection. Clinical diagnosis is key.
I’d be wary of taking @cinnamon_girl’s advice on vaccines
Noted, but I don't know why you're bringing it up since c_g hasn't mentioned vaccines here and the thread's about Lyme disease. She's suggested the eminently sensible (to me at least)
Look up NICE guideline and show to GP.
Thanks for all the comments. The initial antibiotic does was a large one and was prescribed by a doc in France, but my doctor at home who has dealt with Lymes said that would have killed the bacteria and there is little point in getting a blood test. I'm thinking it is a matter of time in terms of getting better and I can still ride, but can get pretty tired and sore afterwards. It is better than it was about a month ago.....or maybe I'm just getting old
Were you tested in France? If so, do you have a copy of the test result? You were given the standard dose which is the same as that recommended in NICE guidelines. However, doxy is normally prescribed in the first instance but it can be brutal.
Do look at "Ongoing symptoms after a course of antibiotics" in this NICE link:
https://www.nice.org.uk/guidance/ng95/chapter/Recommendations#diagnosis
Royal College of General Practitioners Lyme disease toolkit:
https://elearning.rcgp.org.uk/mod/book/view.php?id=12535&chapterid=408
Whichever way you look at it, you have ongoing symptoms and the guideline allows for a further course of antibiotics. If I were in your situation then I'd be grabbing the doxy and preparing for a rough ride for a few weeks. All the NHS can offer is 2 courses of antibiotics, they have no Lyme experts and you'll be left on your own to figure it meaning private treatment which ain't cheap.
Good luck with navigating this and do shout out if you have any q's.
Your gut microbiome has just been nuked - I would being taking some high strength probiotics, and at least one natural like saurkraut/kefir. Would also avoid refined sugar for a while. And plenty of plants in the diet.
Not to derail the thread but
@cinnamon_girl
Don’t believe I’ve said any such thing
I remembered from covid so went back and checked before posting and you did, indeed.
But regardless - I agree with you on the Nice guidelines - and the sensible suggestion to return to the doctors. Going back to the pro's is always good advice 🙂
I’d be wary of taking @cinnamon_girl’s advice on vaccines given her covid asshattery and propensity for conspiracy (they won’t know if it’s safe for years, it’s an experiment, they might not release safety data anyway!)
On Lymes CG has often been the stand out source on info if you’re suffering. 👍
There's a rather scary story on the BBC website about a young lady that contracted Lymes Disease in Wales and seems to have been pretty badly let down by the NHS and misdiagnosed.
It might be something that's not at the forefront of our minds at this time of the year, but it's well worth reiterating the need to be aware and get antibiotics quickly if you get a rash following a tick bite (or simply discover a bullseye rash).
I don't think I was aware that you could buy home diagnostic kits.
https://www.bbc.co.uk/news/articles/cge75r7p3nlo
pretty badly let down by the NHS and misdiagnosed
That's the problem we all treat medicine like its getting a car repaired and its simply incompetence or financial cost cutting that stops us getting the "right" solution quickly/easily. Perhaps her "rash" should have been obvious to the first doctor who saw her, but then if it was the classic Lyme rash I'd have thought it would have been obvious to a climbing instructor doing a ML course too! Then once you have a diagnosis we think there should be a magic fix - but its not like a car where if the manufacturer wants to they can just replace an entire engine or even the whole car.
I don't think I was aware that you could buy home diagnostic kits.
Treat with caution! Most (perhaps all?) of these kits are intended for professional use only, but are sold online to anyone. The accuracy data is typically based on relatively small studies, and presented in a way that makes them sound great but are actually reporting agreement in lab conditions with another lab test which is itself not that accurate! Understanding the result requires at least a rudimentary understanding of Immunology: IgG v IgM antibodies.
All the NHS can offer is 2 courses of antibiotics, they have no Lyme experts and you'll be left on your own to figure it meaning private treatment which ain't cheap.
Slightly misleading - they do have Lyme disease "experts". They just don't have consultants who only do Lyme disease. You could say the same about lots of conditions. Certainly in Scotland there are microbiologists who specialise in tick borne infections. Its not really an "NHS" problem as such, its a global state of the science/medicine - so you can pay for educated guesswork.
I find it difficult to believe that one could develop systematic arthritis in a week. Aching joints as a side-effect of medication, sure. Get well soon.
We all make our own choices but the coercion used was off the scale.
With good reason. Herd immunity only works if you have a herd.
On Lymes CG has often been the stand out source on info if you’re suffering.
Yup.
On the home testing issue; I've twice been treated for Lyme Disease. before the first, I was given a blood test. When I asked about a test the second time, I was told it was essentially useless as it would show Positive as a result of my first infection.
On the whole, I think there's an element of unfamiliarity involved. Anyone near here presenting with that sort of rash would be on the doxycycline within hours.
Experts you say??