[Closed] Lyme Disease - NICE consultation

There was a very good piece on BBC Radio Scotland yesterday afternoon, I was in the garden so didn't post, but should be available on catch up.

Was an American doc that reckoned we could get rid of LD.

I've tried reading this draft consultation, seems to be too wordy and promising little.

A UK Lyme disease charity who's been involved in the consultation made this preliminary response:

http://www.lymediseaseaction.org.uk/latest-news/preliminary-response-to-draft-guideline/

Edit: thank you for posting this.

Compared with other NICE guidance I thought it was quite concise!

Interesting read, I'll mention it to my GP on Friday 😕

RicB and downhillfast - do either of you have/suspect Lyme?

I had it about three years ago. Found a tick after walking with my kids in Highlands (thankfully none of them had any), and about three weeks later noticed the very obvious “bullseye rash” while taking a bath. Went to local infirmary in Glasgow and said to the front desk nurse “I think I have Lyme Disease”. Her response was - “What’s that?”. The doctor had at least heard of it, but my consultation consisted of him Googling a bit, then calling whatever the UK version of CDC is, and giving me a prescription for a massive dose of antibiotics.

Glad to know its being taken seriously, and hope the medical community are made more aware of the disease.

I had it back in 2013/2014, went to gp who happened to be into the outdoors and was well aware of it, diagnosed fairly quickly as I did have a good recount of tick bites and the bullseye rash. No messing about, I got a long course of antibiotics and felt brand new about three months later.

Two Lyme charities have made public their response to the NICE draft consultation.

Brief summary from LymeDiseaseUK, a detailed one is also available:

http://lymediseaseuk.com/2017/11/08/lduk-responds-to-draft-nice-guideline/

Preliminary response from LymeDiseaseAction, again a detailed one is available:

http://www.lymediseaseaction.org.uk/latest-news/preliminary-response-to-draft-guideline/

Here's the latest quarterly report from Public Health England. Acute infections for this quarter have doubled in comparison with the same quarter in 2016. Again an upward trend in all cases.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/660591/hpr4117_zoos.pdf

The Centers for Disease Control and Prevention (CDC) in the USA have stated that studies have suggested that around [b]300,000[/b] people in the USA are diagnosed with Lyme disease each year. 😯

I had a discussion with my MP in Spring and have now been asked for my comments on the NICE draft consultation. My MP had relayed my concerns to the Parliamentary Under Secretary of State for Public Health and Primary Care, who funnily enough I've had dealings with before when he was in a different position.

It will be a challenge for me to convey my thoughts, frequently struggle with constructing sentences and feel that a large part of my vocabulary has gone AWOL.

Well done, Cinnamon Girl! You obviously expressed your thoughts clearly when you met up with your MP.

I'm sure your response will be just fine, although I'm happy to proof-read it, if you like.

Thanks for sharing Cinnamon girl.

As someone who deals with and has to implement NICE guidance on a frequent basis, I found the guidance to be fairly reasonable for an initial draft for consultation.

The remit of NICE is to appraise available evidence and produce guidance for healthcare professionals, be it in the form of Technology Appraisals (must-dos), Clinical Guidelines (should-dos), and Evidence Summaries (we don't really know so here's the evidence - make your own mind up). NICE have done the best they can with the limited evidence available - doctors are told what symptoms to watch out for and how/when to consider treating. In my opinion the key thing with Lyme is to raise diagnostic awareness, which this guidance helps to do.

I find it hilarious that LDUK have criticised NICE for a lack of evidence whilst happily sporting a huge advertising banner for a treatment claiming to harness 'nature's powerful arsenal' (I'm not naming the product as I don't want to give them free advertising), which is obviously supported by absolutely b*gger all evidence and will almost certainly give patients false hope in exchange for a bucket load of cash.

wow two months and he's not appeared yet...

You're so kind Esme, thank you and shall bear your offer in mind. 8)

RicB - ah, thanks for explaining. 🙂

Yes, definitely appreciate that it was challenging to produce especially with a varying quality of evidence. I do tend to agree with the Lyme charities and consider that regional centres should be the way forward. It is unfair for overburdened GPs to deal with such a non-straight forward disease. However the most important factor is that we don't have any Lyme experts in the UK and I see no mention of training perhaps the infectious diseases folk.

What really made me cross though was the comment in the guidelines that 'most people recover completely', that is totally misleading and should be removed.

I agree with you re raising diagnostic awareness but nevertheless would like to see a nod to those of us who've resorted to overseas testing (which reminds me, this nonsense about only NHS accredited testing for a disease where testing is around 50% accurate) possibly along with guidance/treatment from a non-UK Lyme specialist - are we going to be dismissed/discriminated against due to the path we've been forced to take?

Overall I feel it's being swept under the carpet and don't forget that Jeremy Hunt told John Caudwell there is no money for Lyme disease.

Charities have to raise funds and really I see this as being no different from the British Heart Foundation recommending Flora junk or a thyroid charity being sponsored by a pharmaceutical company. From memory there was a person on here who'd, I think, followed the Buhner protocol with good results.

bigjim 😀 I'm sure he'lll turn up, he always does. 😉

Although we don't have many [i]specific [/i]Lyme experts in this country, I gather Infectious Diseases Consultants and Microbiologists are 'expert enough' to diagnose and manage the condition, and GPs can easily seek their advice. Alternative diagnoses include things like chronic fatigue and it's sometimes hard to say for certain whether it's definitely Lyme, hence difficulties in the UK and other countries re establishing diagnostic and treatment pathways

Overall I feel it's being swept under the carpet and don't forget that Jeremy Hunt told John Caudwell there is no money for Lyme disease.

With respect I disagree - it takes a huge amount of effort and resource for NICE to draft, consult on and produce guidance, it's anything but sweeping under the rug. The NICE workplan currently goes into 2020 so if Lyme wasn't important it would have been bumped to the bottom the the list by now. Don't forget this is a consultation specifically intended to obtain feedback/comment. It's not the final guidance. Plus the antibiotics aren't earth-shatteringly expensive so I don't see a funding block

I'll refrain from commenting on Hunt.

Also, if it helps; this is on our regional antimicrobial stewardship radar (admittedly not at the top but people are aware) so isn't going away. Don't forget how many healthcare professionals enjoy the outdoors and are willing to keep pushing this issue.

Charities have to raise funds and really I see this as being no different from the British Heart Foundation recommending Flora junk or a thyroid charity being sponsored by a pharmaceutical company. From memory there was a person on here who'd, I think, followed the Buhner protocol with good results.

This is all well and good but there's a line across which the charities stop becoming independent and become guerrilla marking arms of the manufacturers. I remember the dementia charities that went from a small number of altruistic relatives to huge powerhouses able to recruit national PR companies. At the same time that a number of pharmaceutical companies were launching new dementia drugs. I wonder who was funding the charities....

Yes, access to the dementia drugs was made available on the NHS but patients sadly and unfortunately had wildly optimistic expectations of the effects of these drugs ('they'll cure me'), whereas actually they simply slowed the progression of Alzheimers (one of the three main types of dementia).

Oh and re thyroid charities - the NHS spends £34m on a drug called liothyronine which evidence tells us is no better than bog-standard thyroxine for long-term use in all but a tiny handful of exceptional cases.... I'll let people look up the BTA liothyronine position themselves

Speed reading, sorry and will re-read your response. Had to comment on this:

Oh and re thyroid charities - the NHS spends £34m on a drug called liothyronine which evidence tells us is no better than bog-standard thyroxine for long-term use in all but a tiny handful of exceptional cases.... I'll let people look up the BTA liothyronine position themselves

Not true. The BTA are a gentlemen's club who repeatedly ignore the evidence and patient experience. They're covering their butts otherwise they'd be sued by angry thyroid patients for being left to rot on Thyroxine. Around 10% to 15% of thyroid patients are unable to convert T4 to T3, Liothyronine does the job for them.

BOOM!!! Former Chair of Royal College of Physicians of Edinburgh, former President of the BTA, former Physician to the Queen when she was staying in Balmoral etc. His latest paper, 'thyroid hormone replacement - a counterblast to guidelines'

NHSE have classed liothyronine as low-value for the NHS (along with several other treatments).

[url= https://www.england.nhs.uk/wp-content/uploads/2017/11/items-which-should-not-be-routinely-precscribed-in-pc-ccg-guidance.pdf ]Page 19[/url]

I agree some patients do need liothyronine (as I stated above), and NHSE agrees, providing it's managed by an endocrinologist but a significant number of patients on it could manage perfectly well with thyroxine. The 'being left to rot' comment isn't particularly helpful is it, and I'm not sure why patients would sue BTA as their care isn't provided by BTA?

Interesting opinion you've linked to but re evidence - NICE/NHSE will always trump the opinion of a single physician, even if he did look after Queenie

Hello RicB and just returning to your posts, one of which I partly replied to.

It's odd that a specialist clinic for infectious diseases (not sure whether specifically for Lyme) was opened at Winchester Hospital and 6 months later it closed. I don't know whether this was due to cost-cutting or what the reason was. Do you know anything about this?

Are Infectious Disease consultants, together with Microbiologists, able to diagnose and treat co-infections?

Is it possible to read the feedback to these draft guidelines left by other organisations or is that confidential?

It can become very murky with charities, didn't know that about dementia charities and it's pretty immoral. Frankly I avoid the mainstream ones.

The example I gave about a thyroid charity receiving money from a pharmaceutical company - it's actually the British Thyroid Foundation who are the mouthpiece of the British Thyroid Association.

Liothyronine hasn't actually been deprescribed thanks to thyroid charities and their supporters making a noise. Just to mention that Liothyronine is used by thyroid cancer patients immediately after surgery. There is a genetic test called DIO2 which can determine whether there is a conversion issue and some patients have managed to get the NHS to prescribe on the basis of a positive test.

NHS Endocrinologists in the main seem to consist of diabetes specialists who know nothing about the thyroid. We have reference range medicine and if you don't fit into a box then it's something else, clinical diagnosis has gone the way of the dodo.

It's the BTA who devise guidelines, they are guilty of leaving many thousands of thyroid patients ill, forcing them to pay for private testing, paying for private doctors and buying medication abroad. It's a scandal and I now refuse to discuss my thyroid condition with the NHS as a matter of principle due to the sadistic BTA guidelines. In any case I have to buy my own meds despite an NHS Endo agreeing that I needed Liothyronine.

It's always good to hear from someone who has first hand knowledge and thank you for your contributions. 🙂 Do hope to hear more from you.

ISTR, yonks ago, reading of a large cash offer to anyone who found in a PRJ a paper supporting the 28-day antibiotic treatment limit. There were no takers, so no such paper was offered. So far this is anecdotal. But if true, the 28-day limit is also anecdotal. What is the Caring Practitioner to do?

Anecdotal no more...

https://www.lymedisease.org/lyme-study-embers/

... of which the first (or second) sentence lists 2 x PRJs.

Now I can remember drug cartons reminding patients to take the entire dose. I guess this is to reduce the chances of resistance developing in the infection as a result of inadequate treatment. Oh dear.

Random musings led to this thought. Parasites evolve to modify the behaviour of their hosts in a direction that increases their chance of onward propagation. Thus the Nasty Thingy that turns mice into catfood, the NT in woodlice, Malaria leaving its victims hot, sweaty and comatose at dusk when the mosquitoes are out. The sheer awfulness of cholera needs including. I just wonder if LD might have done something similar, if so, what?

I'll leave you with these happy thoughts, and get out into the sunshine.

PS Woodlice, NT is Plagiorhynchus cylindraceus, for those consumed by curiosity. The mention I saw was from the USA, it may not be in Britain. But my woodlice house invaders show that same behaviour.

An update ...

NICE guidelines on Lyme disease were published a couple of weeks ago.  If anyone suffers from insomnia this will sort it out:

https://www.nice.org.uk/guidance/ng95

Reactions from UK Lyme disease charities:

https://www.lymediseaseaction.org.uk/latest-news/nice-guideline-ldas-reaction/

https://lymediseaseuk.com/2018/04/11/nice-lyme-disease-guideline-published/

There is a Wake Up to Lyme campaign and free awareness packs are available, they're also available to download.  Details:

https://lymediseaseuk.com/2018/04/26/wake-up-to-lyme-campaign-2018/

Let's be careful out there.

Good update, cheers

It’s odd that a specialist clinic for infectious diseases (not sure whether specifically for Lyme) was opened at Winchester Hospital and 6 months later it closed. I don’t know whether this was due to cost-cutting or what the reason was. Do you know anything about this?

Yes. Everyone is out to get you.

Are Infectious Disease consultants, together with Microbiologists, able to diagnose and treat co-infections?

Yeah, nahhh Porton Down and LSHTM post docs are all ****ing incompetent imbeciles, they would never poasibly cope with two infections at once....it'd make their tiny minds implode. Better contact Nelsons Natural World instead.