Im unsure if the OP has been diagnosed with Lymes or whether she thinks she has it because of the symptoms. I cannot comment on the Lymes itself but you must understand that the symptoms described can also be symptoms of extreme stress and anxiety. How do i know – well i have been there myself.

All this fighting, analysing, worrying, researching, battling is extermely stressful and the byproduct of this extreme stress are these strange symptoms, which are very real and is with you constantly, every hour of every day.

If it is Lymes leave the GP treat it but if not I’d let it go and focus on more positive life things instead. Trust your body and mind to heal itself – as long as you consciously get out of the way and let it do so.

Thanks for the response G_L.
You’re right. I’ve had antibiotics from my GP.
[As said previously, I’ve no issues with my GP. He was upfront in not knowing about tick-borne infections, and has listened to what I’ve said, and up until the last appointment, after he’d spoken to RIPL, seemed interested reading up about it.]

I believe the next line from the NHS is IV antibiotic. . It appears this is used if there are serious heart or central nervous system issues, and I’d like to think that if I started blacking out, or my heart started playing up, that the tick-bite would be taken into consideration, even without a positive test.

The conventional approach is that the short course of abx cures it, if not, then a second course, then if symptoms are really bad, the IV’s. [Straight to IVs with heart/CNS issues].

The general consensus seems to be that ~10% people don’t respond to the initial recommended course of abx. I’m not sure what the guidelines are at that point.

The ‘quack’ position is that if you still have symptoms, you still have an active infection, and you should continue taking abx until the symptoms disappear, and consider changing the abx if still not working. Also, that you should take more than one type of abx, as the bug exists in different ‘forms’.

As there seems to be loads of people online with ‘treatment failures’, this leaves a layman like me confused as what to do to prevent slipping into ‘Chronic Lyme’.

Found my first tick today. Seems to have come out cleanly. Was still small so didn’t appear to have been in long, and it was in a conspicuous place. Must’ve been picked up last night.

I’m watching for what.. feeling generally crappy and energy-less these next few days?

To provide a bit of insight to those complaining about test accuracy: There are very few 100% accurate tests in medicine. Almost every test has false negative and false positive rates. Following Baysian probability, if you do the test on a wide range of patients (Eg everyone that has vague symptoms that could by Lyme), you end up with a low pre-test probability of disease. In that circumstance, a positive result is more likely to be a false positive than a true positive, and thus the test is meaningless. People requesting the test have to appreciate this and restrict the test accordingly.

+1 CG seems to come off as personally insulted that the tests are unreliable and seems to think that it’s the doctors fault.

Want better tests? Donate to a research insitution or shut up. And why do people feel so entitled to antibiotic treatment, for a disease that can’t be accurately diagnosed and isn’t a major killer – antibiotic resistance is a real bloody problem and we should be limiting their use.

The evidence shows that Lyme persists and short courses of antibiotics don’t always cure it.
[Other evidence shows that the Lyme bug can change to an antibiotic resistant form when under attack from antibiotic and stays dormant until relapsing at a later date – The NHS doesn’t follow-up patients or collect data].

I understand that Lyme isn’t fully understood, and there is no recognised catch all cure. More research is needed, but if the UK establishment doesn’t recognise it as a problem, nothing will be done. I read somewhere that we are waiting for an answer to a question we haven’t asked yet.

There are Drs in the US who are treating 1000s of ‘Lyme’ patients, and claim to be reducing symptoms and improving their quality of life. I have seen doubts cast on the practices and motives of these Drs, but why doesn’t the NHS send a few Drs over there to find out if there is anything in it, or whether they are just Quacks – either way it will be a contribution the public health in the UK.

LOL evidence based medicine my arse, that’s not something that you want, you want something that confirms the few cherry picked articles that you have read. The CDC in the US currently think that post lyme syndrome in an autoimmune phenomena – so they are pretty much in line with what the UK thinks.

Science takes time to find the truth and medics don’t treat people based on hunches, they treat people based on what institutions such as the CDC are saying.

Why piss good money up the wall trying to please some neurotic fools with aches and pains, when that money can be spent on more important health issues?

I’m watching for what.. feeling generally crappy and energy-less these next few days?

I believe the average time for symptoms to appear is around 14 days, but can be a few months.

Symptoms can be – what you say, and/or muscle/joint pains, nausea, headaches, etc.
If you get these go to GP and mention you were bitten by a tick.

Tom, I’m afraid you have got it completely the wrong way round. Your thinking is very confused – Have you got any recollection of being bitten by a tick recently – as Lyme can affect cognitive function? 🙂

The CDC, NHS,etc., are treating on a hunch. My GP and RIPL have stopped treatment on a hunch that I don’t have Lyme or any other tick-borne infection – they are playing the numbers game, they might be right, but it’s still a hunch.
ALL the science shows that the tests are unreliable and lyme and lyme bugs can persist after the basic antibiotic treatment.
There is NO evidence that antibiotics cure Lyme or kill all the bugs. .
It is accepted that there is no definitive cure for Lyme – we don’t know which is the best antibiotic, we don’t know how best to tackle the cyst or biofilm forms of the bug.

Your bluff and bluster does not make for good evidence based science, or discussion…..but this is STW 🙂

If you are saying that the medical world has made a decision to limit the use of antibiotics, and are taking the approach of saying that we can reduce the symptoms in most people with Lyme disease to an acceptable level with limited antibiotics, and the numbers that we can’t are an acceptable price to pay to stop overuse of antibiotics – then that’s another issue.

Anyway, thanks for the bump on a tick thread – If you don’t want to get caught up in the obviously emotive ‘Lyme Wars’…….CHECK FOR TICKS

Tom,
This might [or might not] interest you.

Lyme Antibiotics

Watch from 31:00 to 33:45

The background is that the Canadian parliament passed a law that forced the federal government to hold a conference, within a year, to come up with a new federal framework for the treatment, etc of Lyme – why couldn’t our parliament do that?
Anyway it goes on for days. The clip above starts just after a well respected scientist, from a well respected University has answered a question on his recent research where he tested a number of antibiotics against lyme in-vitro.

The only single drug to eradicate the bugs was a really nasty one normally given as part of cancer chemotherapy, so not recommended.
No antibiotic worked 100%, so they tried combinations, and found there was only one combination that killed the bug in all forms [spirochete, cyst and biofilm], and one of the combination is one of the more specialist antibiotics. He then talks about further animal or human trails.
[As an aside, he found that, in-vitro, doxycycline, which is the first line antibiotic against Lyme, was the drug that most quickly ‘encouraged’ the bug to morph into the harder to treat cystic and biofilm forms – oh the irony].

Anyway, the clip starts with the bearded gent reacting to this. He just happens to be on the IDSA committee, on whose findings the CDC advice on Lyme is taken, and also heads up the ‘anti-microbial stewardship committee’ controlling the use of antibiotics. The CDC advice forms the basis for worldwide Lyme treatment.

It made me smile, but it goes to show the potential harm done by not treating it properly at the early stage when it most easly controlled, and letting it linger causing bigger problems down the line.

[There are 300,000 new lyme cases a year in the US]

Note: The scientist did find one more standard antibiotic that eradicated 100% of the bug, but that needed 4 separate unique doses or cycles.

The CDC, NHS,etc., are treating on a hunch. My GP and RIPL have stopped treatment on a hunch that I don’t have Lyme or any other tick-borne infection – they are playing the numbers game, they might be right, but it’s still a hunch.
ALL the science shows that the tests are unreliable and lyme and lyme bugs can persist after the basic antibiotic treatment.
There is NO evidence that antibiotics cure Lyme or kill all the bugs. .
It is accepted that there is no definitive cure for Lyme – we don’t know which is the best antibiotic, we don’t know how best to tackle the cyst or biofilm forms of the bug.

There is no evidence to suggest that the bacteria resides in humans after a standard dose. There is evidence that attenuated virus does in animal models, but there is no evidence to suggest that it is the cause of the symptoms that are described by Chronic Post Lyme Disease.

There is no point in treating the biofilm bacteria, as it becomes clinically inactive. The biofilm is allowed to build up because the immune system in compromised during the acute infection.

I don’t want to get into swapping links to papers showing persistence of culturable bacteria in treated [human] patients, they are there if you want to find them. .

But say for one minute that the evidence did exist, are you saying that bateria are now of a different form to their initial form, and therefore you don’t have the same infection/disease as before the antibiotics. e.g. in laymans terms, they are ‘inert’?

Another issues is terminology and the ‘stages’ of Lyme:
Acute, Post Treatment Lyme Disease Syndrome, Chronic Lyme, and you mention Chronic Post Lyme Stage.
I’m not sure whether we are discussing the same thing.

I’m not sure where I’m at, I’ve had some treatment, but not the full range available at the acute stage, but they have stopped treating me based on a ‘hunch’ 🙂
Have they decided I’m now in the PTLDS stage? If they have, I’d love to know on what evidence, as I’ve not had all the treatment available in the acute stage. The fact that there are further options at the acute stage suggests that the initial dose/course is not always successful!!

I don’t know what ‘clinically inactive’ means. Does it mean the bateria form a biofilm, and remain in the biofilm, and therefore have no effect on the ‘host’, i.e. they remain there and don’t ‘repopulate’ the host? [Genuine question].

Believe me, I don’t want Lyme, but I want to give it the best chance of being ‘sorted’ at the early stage if I can. I want science based treatment 😉

Scratch that, Lyme Biofilms don’t exist – the lead author of the sole paper that supports them is a Peter Dusberg level quack.

.

ILADs funds quackery – plain and simple.

But say for one minute that the evidence did exist, are you saying that bateria are now of a different form to their initial form, and therefore you don’t have the same infection/disease as before the antibiotics. e.g. in laymans terms, they are ‘inert’?

Yup. Think of them as similar to live attenuated vaccines.

I’m cured 😀

Also, sorry for being a dick to you earlier whimbrel, I kind of admire your level of interest in the subject.

Interesting topic, a total shit storm in the US! But I do think there is a lot of utterly fraudulent science being done by those associated with ILADs, a lot of it seems to be unrepeatable.

Word of advise:

Stick to reputable names and reputable journals, don’t get bogged down by journal articles from crap laboratories or those linked to ILADs and last of all look for repeatability. There’s a good book you should read at some point “Rebels, Mavericks, and Heretics in Biology”. It will give you a history of controversy that I think you will enjoy :). Keep up your interest in Biology, don’t let people like me dissuade you – but be careful about who you listen to.

No problem.
I’m finding the subject fascinating, not just the medical aspect, but also the whole politics – ‘Lyme War’ – situation……and I’ve got skin in the game 🙂
And I want to raise awareness of the little B@st$%£* ticks!!

But, as a final question, which bio-film paper author are you referring to, as I didn’t get the impression there was too much controversy over the existence of it?
I’ve read papers/reports/articles by Sapi, MacDonald and Feng [Feng’s study was the combination abx one referred to before – i.e. the spirochetes formed ‘microcolonies’, which I take as biofilm]

The 2016 one where Sapi is the lead author.

It’s late, I’ll collect some of the various articles I trawled through tommorow.

Wait until a research group from a well known university, without any controversy attached to them, try to repeat. In the meantime, take everything you read with a pinch of salt. I also need to do more reading before I can try to answer some of your questions, as Lymes not my area of interest – mines Dengue and Malaria.

If you love the politics of science, you really must read the book that I suggested. It’s fun to be controversial and be right, just make sure that you are and that your science is sound and repeatable. It’s fun to question everything, just make sure that you aren’t questioning mainstream science to give credit to poor or even fraudulent research.