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UK CFS Patient Rediagnosed with Lyme

Discussion in 'Infections: Lyme, Candida, EBV ...' started by duncan, Jul 3, 2018.

  1. duncan

    duncan Senior Member (Voting Rights)

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    http://www.dailymail.co.uk/health/a...tml?ITO=1490&ns_mchannel=rss&ns_campaign=1490

    The above is a story that appeared in The Daily Mail. I have no idea how reputable that paper is.

    I know how one can go from a Lyme diagnosis to one of ME/CFS - simply stop testing positive, or do not respond to conventional abx therapy.

    I'm a little confused as to how one can go from an ME/CFS diagnosis to Lyme without some sort of positive serology of at least one sort or another.

    Unfortunately, I did not see lab results referenced. It does note "private labs" so I wonder if the NHS-endorsed C6 came back negative. Western Blot would be preferred as it would provide a degree of personal cross-checking against established doctrine.

    I hope she got checked for MCAS, not entirely uncommon in either Lyme or ME/CFS.
     
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  2. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    The Daily Mail is not known for its impartial journalism...it is a very right wing tabloid.
     
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Sounds like she's been taken advantage of by quacks.

    "Rachel and her mother Helen Gordon are speaking out to raise money towards herbal treatment" - wonder what evidence of efficacy there is for that?

    Not sure if there are any reputable papers left in the UK!
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    I am as sure as I need to be to make an un-researched and unqualified statement, "I am sure there are no reputable papers left in the UK". They have all sold their souls (I am talking about the media/press institutions, not necessarily all individuals within such institutions).
     
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  5. duncan

    duncan Senior Member (Voting Rights)

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    I'm a yankee, so my bad. But maybe the story is agnostic enough to fall under the weight of its own inadequacies vs those of its slant?

    Quacks are a possibility, but there's too many unknowns imo to go there. The herbal treatment thing could be because the treating physician is concerned about repercussions to treating with antibiotics with out adequate cause. It could be she is intolerant of antibiotics.

    As to evidence of efficacy, any treatment modality beyond 30 days suffers from the same issue.

    It's a dilemma.

    ETA: If you're going to go the herbal route, why even bother with a doctor? There are enough books on the market, I should think. So if I am the prescribing physician, am I just prescribing myself out of a patient once the patient learns the ropes?
     
    Last edited: Jul 3, 2018
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    I have no difficulty in believing that the NHS would miss Lyme, and then stick to it's guns and refuse to accept a non NHS doctors diagnosis, I also have no difficulty in believing that the NHS wouldn't screen for Lyme, at all, before handing out an M.E./CFS diagnosis.

    When it comes to many conditions the NHS simply isn't any good (IMO), when it comes to putting the squishy bits back together, or making sure the runny stuff stays inside, they are better, but chronic stuff, most of they time they are chronically underqualified, and determined that if they can't fix it, no one can, and as they clearly know everything and therefore aren't at fault it must be the patients fault.

    The only surprise, to me, is that someone who refuses to get better, who chooses to live in a tent when there is a perfectly good house available, according to them, who goes as far as to employ the services of medical staff not of the NHS variety, hasn't been sectioned yet.

    After all, everyone knows that campers who employ their own doctors are a serious danger to society, would you want 46 million of them at the bottom of your garden, there's a reason most people wouldn't.

    As to the story being in the DM, I don't trust the DM but in this instance I have no real reason to doubt the story, other than the source.
     
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  7. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The story seems to be that she has to live in a tent because of all the allergies caused by suppression of her immune system by Lyme disease which has to be treated with herbal medicines.

    That is exactly what quacks would say.
    It is devoid of any scientific or evidenced based credibility.

    Why bother to take it further?
     
  9. duncan

    duncan Senior Member (Voting Rights)

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    Because it underscores what far too many in our communities have to suffer through.

    Because it invites scrutiny to several different but inter-related issues that both ME/CFS and Lyme patients grapple with, i.e., pitiful diagnostics, inadequate treatments, possible charlatans, lousy government governance...you get the idea.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I would have thought it simply highlights that there are plenty of charlatans around prepared to invent pseudoscientific stories for money.

    It seems highly plausible that this person was correctly diagnosed with ME. As you yourself point out, it is completely unclear where the Lyme diagnosis comes from. I cannot see what Lyme disease can possibly have to do with having to live in a tent - unless of course a barrel infection was followed by ME/CFS.
     
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  11. duncan

    duncan Senior Member (Voting Rights)

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    A lot to deconstruct here.

    At the very least, it is well-established that Borrelia messes with immune systems.

    No doubt.

    The human element aside, who cares? :) Why should this be the take away? The take away for me is that diagnostics for both diseases are a joke and state governance for both is a travesty.

    So perhaps it's a good conversation to have.
     
    Last edited: Jul 3, 2018
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  12. duncan

    duncan Senior Member (Voting Rights)

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    Ok, so what would justify overturning an ME/CFS diagnosis for one of Lyme?
     
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  13. Marco

    Marco Senior Member (Voting Rights)

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    And?
     
  14. EzzieD

    EzzieD Senior Member (Voting Rights)

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    That happened to me. My history is a bit complicated: I acquired ME in 1983, then was one of the lucky few who recovered, in 1990, following medical drug treatment prescribed for me by my then-GP, back in the days when GPs were allowed to think for themselves and not constricted by having to slavishly follow NICE guidelines as now. This was also before the psychs hijacked ME and before CBT/GET were yet a gleam in their eyes. Then in 2002 I got bitten by a Lyme tick, but didn't know what it was at the time (I thought the bulls-eye bite looked weird but didn't realise it was significant). I was never quite 'right' after that, and then in 2005 I relapsed into severe ME symptoms again. I was given a diagnosis of CFS and left to it with nothing but a leaflet on CBT/GET, which I hadn't heard of before but which I immediately recognised was total rubbish.

    A couple of years later, I became aware of the existence of Lyme Disease, realised the bullseye bite was what I'd had, and went to my current GP practice about it. I was told Lyme Disease didn't exist in this country, end of story. A couple of years after that, the NHS began to realise that Lyme is real, and I was able to convince my GP to look into it. He sent me for the test they use on the NHS, ELISA. However, ELISA can only detect Lyme in newly bitten people, not someone bitten several years ago, so the test was negative. End of story again. I worsened with increasingly bizarre and incapacitating symptoms, but all my GP would offer was referral to the local 'fatigue clinic'. which I declined. (I was barely able to function by then.)

    Finally, someone recommended me a good local private clinic that deals with Lyme, went there, and they diagnosed me via a combination of clinical history & symptoms (which the NHS will not do), a positive MELISA test (more sensitive than ELISA, but also controversial as to whether it's TOO sensitive and causes false positives) and 'Indeterminate' Western Blot test. I was treated with the standard Lyme antibiotic doxycycline, followed by a few other antibiotics, and improved dramatically: although mostly housebound, I feel much less sick and can function much better than before. I still have the underlying ME but after Lyme treatment it is now moderate instead of severe. I am so grateful to that private doctor.

    Yes, the NHS will absolutely miss Lyme; the only way they will ever make the diagnosis is if you've been newly-bitten and have a positive ELISA test. It's very rare that that happens; ELISA almost always comes back normal and the NHS doesn't bother with the Western Blot if the ELISA is normal, so I'm sure many cases of Lyme get missed and left untreated.
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I cannot think really, in the context of having to liven a tent because of intolerance of multiple environmental stimuli. I think it very likely that the intolerance is not actually allergy. If it is allergy I cannot see how Lyme is relevant. If it is intolerance of an unexplained sort that would seem to be very consistent with ME/CFS. It beats me where Lyme comes in.
     
  16. duncan

    duncan Senior Member (Voting Rights)

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    You may wish to acquaint yourself with Lyme meat allergy. Lyme is also associated with MCAS.

    Please explain how Lyme differs from ME/CFS except purportedly for PEM and pain in joints with swelling. Clinically they are virtually indistinguishable. You need labs to determine one from the other, at least on paper, and the labs are not very good.
     
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  17. Solstice

    Solstice Senior Member (Voting Rights)

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    There is evidence of in-vitro activity of samento and banderol I think. As to clinical evidence I don't know. Then you have B├╝hner's protocol, who does seem or atleast claim to use documented treatments with herbs, but the finer details of that and the efficacy-rate of that eludes me.
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Dear @duncan, we are talking about scientific theories here and in scientific theories, like jig saw puzzles, the bits have to fit snugly and also such that the next bits along in either direction fit. It is no good putting together pieces that vaguely seem the right shape - like 'messed up immune system'.

    I searched for Lyme meat and allergy and found only one paper on anti-alpha gal IgE. The abstract makes it seem pretty clear that the meat intolerance being studies is not due to Lyme-induced allergy. IgE levels to alpha gal were not higher in people with a history of borrelia infection. They found a rise in anti-alpha gal IgE after tick bites but that was consistent with the first piece of information because the levels then fell off. So it seems that if people who have had a borrelial infection are intolerant of meat it is unlikely to be due to raised IgE to alpha gal - i.e. allergy.

    The rise in IgE following tick bite looks to be consistent with a normal immune response. We all make IgE to antigens. If a tick bite injects a mammalian connective tissue carbohydrate we have probably all seen before then a rise in IgE to it would be normal. Allergy is not just IgE but a specific type of reaction in the context of unusually high IgE levels, which people with a history of borrelia did not have.

    So it looks as if the meat intolerance reported by people diagnosed as having Lyme disease is probably not an alpha gal allergy after all.

    Then if we move along another piece, there is no comparison between a putative allergy to a single mammalian antigen that might be present in a bite and multiple intolerance of environmental stimuli. The story about alpha gal allergy, even if it stood up, has nothing to do with messing up an immune system and causing multiple allergies because of immune suppression (which makes no sense anyway).

    Lyme and ME are completely different sorts of disease concept. Lyme is a state specifically due to a borrelia infection. ME is a syndrome of unknown cause that is not specifically associated with borrelia infection. Allocating a particular persons problem to one or other category might be difficult, although I think the default would be to diagnose ME if it looks like ME and a specific link to borrelia infection is unascertainable. I am not sure that one would expect serology or T cell tests to ever be definitive. Reasonable measures to eradicate infection would make sense.

    But if someone has an ME type picture with multiple intolerances I find it very hard to see why one should think this was anything specific to a borrelial infection. It would make much more sense to classify it as the sort of post-infective problem we call ME, just as for EBV or Q fever.
     
  19. duncan

    duncan Senior Member (Voting Rights)

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    I have written often that tick-borne diseases come in packages these days. Sometimes one of the gifts is a meat allergy whose theorized cause is tick saliva. It's happening with a growing frequency, for example, in southwestern US communities where the lone stare tick thrives.

    This is a fact. It is easy to verify if you are inclined.

    Lyme and ME may be completely different sort of disease concepts. Maybe not. The verdict is not in yet. Regardless, they can present in remarkably similar fashion. That also is a fact.

    As for multiple intolerances, please see what I wrote about the woman perhaps being checked for MCAS - a condition that has been associated with both ME/CFS and Lyme.
     
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  20. duncan

    duncan Senior Member (Voting Rights)

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    Sorry, I was in a bit of a rush before.

    Ok, so what you have written here is really the crux as I see it. Yes, Lyme is Borrelia by definition. We can get into other tbd that are often mistakenly referred to as Lyme, but that is a separate matter. But Bb when it disseminates can manifest itself in victims in diverse ways. Part of this is due to the particular priviledged sites the spirochetes end up in, part of it the victims' peculiar immune systems. You got your Steere's Lyme with arthritic knees, you've got your different cranial neuropathies like the 7th (infamously) and 8th (less common but just as debilitating), you've got cardiomypathies, you've got your Lyme Encephalomyelitis, you've got your basic ME/CFS presentation only it isn't ME/CFS it's Bb, and probably at least ten other Lyme variations.

    Testing for Bb is in fact problematic, as you know, even serology. PCR is a crap shoot. Direct testing is essentially not even attempted out side of an EM rash.

    But we do have a couple standard tests, and I would assume before getting diagnosed with ME/CFS a person in the UK would have tried the C6 to see if they had Lyme to rule it out. This is one of the things doctors are supposed to do before diagnosing ME/CFS - they rule most other culprits out.

    So I was musing that it is kinda unusual for someone to go from ME/CFS to Lyme (@EzzieD not withstanding) since Lyme is usually already ruled out. Now, a person could get Lyme subsequent to ME/CFS, but then she'd have both, at least in theory. Anyway, I was wondering how this person got diagnosed with Lyme after ME/CFS, and one way could have been through a Western Blot that maybe had only 2 or 3 or 4 bands positive, along with a positive ELISA (or not). This would not be 2T compliant, but it certainly could be construed as positive for Lyme, and indeed it would be in several countries - and almost would have been in the US had not an arbitrary swing vote occurred in Dearborn Michigan in 1994.

    I wanted to put it out there and see if anyone had any thoughts of their own how this woman might have gone from an ME/CFS diagnosis to a Lyme diagnosis, but in as valid a diagnostic process as possible, since we all know the risks associated with quackery.
     
    Last edited: Jul 4, 2018
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