Hi, I've had ME symptoms for 8 years after getting lyme (rash and +ve nhs blood tests). I was initially misdiagnosed and then when I was, I was undertreated with 2weeks abx.
Diagnosed with ME/ CFS about 4 years ago after struggling with everything!
Left with constant pain etc and have had two hip surgeries to repair weird damage where they couldn't identify why my cartilage had been literally eaten away!
I have pretty much all of the 'points of pain' used to diagnose fibromyalgia. Is there a difference really between fibro and ME?
All over severe pain and muscle weakness is my worst symptoms but have dozens that fit into either category. I'd just like to know what people think so I can speak to my GP about it.
Thanks 👍
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Frostielyme
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I got lyme in March 2010 in North of Scotland and was misdiagnosed initially. I then asked to be tested for lyme as I had very debilitating symptoms. I was tested positive on NHS in October 2010 and given two weeks abx which helped but didn't clear it. I then tested positive again in February 2011 but no further treatment was given.
I think I've probably got post treatment lyme disease or chronic lyme to some, but was diagnosed with ME/CFS alongside a strange arthritis condition several years ago now.
I've seen several rheumatologists and orthopaedic surgeons but still haven't seen a neurologist. I'm scheduled to have more MRIs done but no one really has any idea! So frustrating!
I've tried to explain it to several Gps and my surgeon. They sadly they can't do anything for me if it's still lyme, my bloods are now negative (which usually happens after a length of time with/without treatment as the bacteria hide).. it's highly frustrating, even asked to be referred back to infectious diseases but they wrote a letter back to my GP saying there was no point.
I spoke to a US specialist once who told me I definitely still have lyme and that I need IV abx but my GPs say their hands are tied due to NICE guidelines
I had Lyme in 1997, when it wasn't well-known. I wasn't diagnosed for almost 2 years, so it had gotten into my central nervous system by then. I had ... I think it was 3 months of IV Ceftriaxone to get rid of it. This was in the US, too, which has a slightly different form of Lyme than you find in Europe.
Ever since then (and it took me a few years to figure this out), I've been more tired, more achy, I've had more sensitive skin, and my immune system hasn_t worked as well. Might not have been the Lyme; could have been a coincidence, could have been the nasty antibiotics. Who knows?
Ouch that sounds awful. How are you feeling now? Yes it's different strains of bacteria over in UK and again in Europe, but pretty much same symptoms.
It's a bit of a catch 22, it could be abx or it could be lyme still in your system! I should've got IV abx but even in 2010 they didn't have very good protocols or knowledge in UK
I assume that I'm over the Lyme, but who knows? The pain and fatigue, etc. make sense given my current diagnoses, but I guess I'll never know...
I've heard that UK medical knowledge of Lyme Disease isn't great. I've also heard that the European version isn't as bad, but that doesn't mean that it doesn't need to be treated!
Unfortunately Lyme Disease testing in the UK isn’t as reliable as once thought although sometimes DRs stand by the result. I’ve read lots about people either unaware of bite or given treatment who have had symptoms of chronic Lyme and misdiagnosed as Fibro . When tested in Germany that are more advanced testing they find out it is in fact Lyme. However the NHS won’t accept results from abroad and therefore don’t treat. The NICE guidelines only to do 1st tier and stop if negative is causing many to slip through the net. The full test should be done to anyone they suspect have Lyme but of course money I expect again!
I read a study whereby a number of people with classic bullseye (so had Lyme diagnosis clinically made) had the test and only a few were found positive via the test. So that shows it needs a review of policies and I believe the Lyme community are fighting for this. I think everyone with chronic illness should support each other’s petitions to bring about change. This way we can ensure everyone gets the correct diagnosis. I think it’s likely some people with Fibro may be misdiagnosed but unsure of the percentages. More research is needed for Fibro to find a diagnostic test and treatment etc.
Do you think you have chronic Lyme? If so, you may need to look into vitamin supplements to help and speak to your GP again. I think many people with chronic Lyme seem to be struggling to get a diagnosis here in the UK and treatment is also less than forthcoming too.
If you need further information about chronic Lyme check out UK charity websites and helplines. There isnt a Lyme Disease community here on HU as yet
Hiya! Thanks for your info. Yes I've been part of Lyme community for many years now and been to conferences and parliament debates.
The NICE guidelines have changed in that anyone who presents with a bullseye rash automatically gets abx, still not a long enough course though. Only about 2/3 of people get the rash though so many are left undiagnosed.
Yes the testing is so unreliable! They test for an antibody response but sometimes people don't produce enough to get a positive result when they have lyme. Others who have had lyme for a while may be negative as the bacteria literally hides in your organs and tissues to avoid your body producing a response.
I reckon some of the bacteria were killed off but those that survived have persisted and "hidden'' from my immune system after a year or so
And yes I'd say I do, but it's more widely accepted as post treatment lyme disease rather than 'chronic' as it is too suggestive of ongoing infection! Bah! The people who make these decisions!
I most likely do have an ongoing infection, especially since I have a unknown arthritic condition... the Dr's are just so useless though. I've been seen by infectious diseases and rheumatology and am waiting for knee scans as we speak.
The Dr's agree it's likely to be caused by lyme but say they are bound by guidelines and can't give me the IV abx that I probably need.
I was diagnosed with ME about 4.5 years ago now but present with more 'fibro' like symptoms... it's all very confusing!
I've tried the buner herbal protocol and acupuncture which did help a but cannot afford to keep it going. I feel exactly like I've 'fallen through the net'!
Yes you're absolutely right, we do need to support each others illnesses. They overlap so much too. There will be people who don't have lyme but are bring treated and people diagnosed with ME/CfS/fibro/MS that actually have lyme and are not being treated.
I'm currently spending 5/7days house or bed bound and struggle with day to day life.
Another thought: in North America, there are a lot of other tick-borne diseases going around, and often people who have Lyme Disease are also infected with something else. Don't know if it's the same here?
Something else to think about as don't think I've ever been tested for Lyme Disease. I used to be a keen walker so it is possible I was bitten I suppose. Thanks for bringing this topic up.
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