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UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023
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Wyva
Senior Member (Voting Rights)
There are also the CellTrend tests for ME/CFS, POTS, long covid, small fiber neuropathy in Germany, which aren't really validated as far as I remember but sold to patients: https://www.celltrend.de/en/pots-cfs-me-sfn/
InitialConditions
Senior Member (Voting Rights)
Yes, but there are mixed findings about these autoantibodies in ME/CFS so these are likely next to useless to support a diagnosis.
"Auto-antibodies against the Beta-2 adrenergic receptor, auto-antibodies against the muscarinic cholinergic Receptor 3 (M3) and auto-antibodies against the muscarinic cholinergic Receptor 4 (M4) are elevated in a subset of 20-30% of all patients suffering from Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)"
Wyva
Senior Member (Voting Rights)
Yes, but these tests are used the same way by desperate patients to get a "confirmed" diagnosis. This is another lab that gets recommended to members in my group from time to time and some people see a positive result as a confirmation that thay have ME/CFS, POTS, SFN. I'm not sure this is wildly different from the dubious Lyme test story.
I hear you. But that's not the way it works. It's not the real world.
I had an embedded tick removed in the center of a bulls-eye. But I'd been infected long before that. That was almost 20 years ago. Since then I've tested positive on the 2T and the C6 and the MTTT - all FDA aprroved and darlings of the CDC. I've been tested at the NIH and Johns Hopkins and through all the best labs including Mayo and Stonybrook and Imugen and Immunetics. Some of these labs don't even exit anymore.
It's more complicated than that, though.
For instance, I've had infectious disease specialists remark that I can't have Lyme because Ive been treated. In a world limited by patent interests, that's patently absurd. Right up there with claiming if you test negative you cannot have Lyme. Seronegative Lyme was clearly acknowledged as a problem back in the 80's.
Little is black and white in ME/CFS and/or Lyme.
My son was first diagnosed with giardia and then an acute but previously undetected case of Lyme using CDC's recommended test. (We are 10 miles from Lyme and ticks are everywhere). Shortly after that testing, he woke up one day to the full reality of ME. His most significant period of improvement was for antibiotic treatment of Lyme - overnight miracle - but it only lasted a few months. He also has had periods of improvement following ME treatments and of course pacing to avoid PEM is mandatory.
So does he have ME? Or Lyme? Or both? Or have these various pathogens mutually played havoc with his system and its now impossible to tease apart what symptoms and pathology came from the tick-borne pathogens, what from giardia, and what from the more recent SARS-CoV-2
Regarding the tests - AFAIK, patients are usually tested for Lyme but not all the coinfections that ticks can carry. So even if the Lyme test were perfectly sensitive and specific, the problem might be a tick borne pathogen not being evaluated.
Ash
Senior Member (Voting Rights)
Yes.
"A man can have as many diseases as he damn well pleases."
Once you got one you’ve opened the door to more.
This is still widely underappreciated. Fortunately, awareness is slowly gaining traction, as is the novel(!) concept that some of these pathogens can cause neurological problems via infecting the brain, including babesiosis. Th babs brain connection should have been on the map in a big way years ago. Why wasn't it?
But your point holds. If we're not looking at other TBDs that can be giving rise to symptoms that mirror ME/CFS, then who knows what you might actually have sometimes? And not to sound overly bleak, what if the tests are subpar, or limited to only one or two species?
PEM as a qualifier can help.
Ash
Senior Member (Voting Rights)
If the problem of unreliable diagnosis leads to some scammers scamming, then an obvious solution to this would be to spend public health dollars/pounds on making your testing protocol and the actual technology of the test itself better.
But because in USA and UK the public bodies have decided to solve the whole problem by telling patients that they’re only imagining being ill or imagining their illnesses to be any infection at all, let alone one caused by, or potentially caused by tick borne nastiness. This isn’t rational because ticks are everywhere.
But because in USA and UK the public bodies have decided to solve the whole problem by telling patients that they’re only imagining being ill or imagining their illnesses to be any infection at all, let alone one caused by, or potentially caused by tick borne nastiness. This isn’t rational because ticks are everywhere.
I know this isn't what you were speaking to, @Mij , but lest anyone think I don't deserve my ME/CFS diagnoses, I received them from no less than six clinicians, four of whom were all prominent ME/CFS researchers. Each one would be recognizable to most on this forum - and each was well acquainted with my Lyme results. I think they were more or less split: half believe I have both Lyme and ME/CFS, half feel it's now just ME/CFS. (Half tested me for POTS and demonstrated I have it; none of my Lyme doctors looked for POTS)
My Lyme doctors...Except for one or two, I can't think of many I'd have lunch with. Too much polarizing politics and embedded biases. But I don't think any were LLMDs; they were all infectious disease specialists.
Most of my Lyme researchers/clinicians have watched as labs like the one in Germany rolled out their Elispot tests - not so much to circumvent the 2T but because of the limitations inherent to the 2T. There have been similar lab alternatives springing up, including claims of direct culturing. Some have been scams. But to my mind at least, most have been genuinely seeking a better way to see if Bb is still mucking about in a patient's body.
It's smart to be skeptical. Broadly skeptical.
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I’d never doubt your diagnosis @duncan …. But it has to said, I’ll certainly glower at you in a sickly manner, from a dark corner of this form, filled with all consuming envy over your shiny portfolio of medical professionals
lol
I'd trade them all for my health back. Half my health. A quarter.
And a smidgen of my old faith in the medical system.
You'd think the moral and rational conclusion of someone who cares enough to write as vehemently as the author did would be that there should be more investment in good clinical centres and research into these diseases to ensure that better tests are developed.
Maybe I'm wrong but when I read it, it felt like the beliefs of the author were that it doesn't exist and all these people in the UK are just seeking tests that tell them what they want to hear from dodgy charlatans 'because/when they have CFS' (whatever he thinks it is).
Is anyone familiar with this gent and his background etc?
Have had ME diagnosed in 2003 and bartonella in 2010. Which is a co-infection or whatever of lyme. The clinician that diagnosed with me drew blood and took up a list of symptoms, the blood test came back positive and confirmed the clinical picture. After that I started googling bartonella. Those brightly purple stretch marks I had on my legs and hips were typical of a bartonella infection. I'd always imagined they were from working out so hard that I just got stretch marks on my legs. Which if you'd looked at me then wasn't all that plausible.
After that I've had blood drawn for several lyme test with mixed results. Two coming back positive, one negative. Couldn't tell you which test told what. All I can tell you is that having done 3 tests and being none the wiser sucks. I can assume just based on having had tick bites, having had an obvious infection with bartonella. But I can't be 100% sure. I'm hoping for some definitive test somewhere in the near future.
After that I've had blood drawn for several lyme test with mixed results. Two coming back positive, one negative. Couldn't tell you which test told what. All I can tell you is that having done 3 tests and being none the wiser sucks. I can assume just based on having had tick bites, having had an obvious infection with bartonella. But I can't be 100% sure. I'm hoping for some definitive test somewhere in the near future.
I don't know, but it sounds like the typical attitude of we don't know(for sure) yet, so it doesn't exist and we shouldn't pour resources into it. I think there is some funding behind lyme and co-infections research btw. Some wealthy donors putting in money. It seems to be the only way you get anywhere with anything. Have a sugar daddy.
Ash
Senior Member (Voting Rights)
Oh **** you’re right.
We’re waiting for someone super rich or politically affiliated with the super rich, to fall sick, fail to thrive by buying the best available care for themselves. To be astonished and outraged that their money can’t promptly deliver the goods for them.
Still suffering the wealthy may end up in a place where their only hope, for their own salvation is to campaign for research. To generate sufficient interest in this cause, they’d then have to talk about the scale of the problem. This would mean to get what they need for themselves they’ll have to talk in terms of getting the needs of others outside their circle met. Can’t be helped.
If the wealthy are successful in winning round enough of their financially powerful cohort to get on board and if the research they fund is successful to some extent,
we will have to wait to see if there follows any campaign to distribute access. Whether this occurs with the same sense of pace and urgency.
Maybe the funders will have bought into the process such that personal gain through patents or ‘non-profit foundations’ with various personal advantages to them, and this will keep them interested.
Then we would have to wait and see there is broad political will, at the top, to get it over the line and into action.
Would any of the benefits of this process eventually filter down to us all? Maybe. Depends how dominant society views of usefulness of our lives to their project. Trickle down economics as it functions in healthcare as everywhere.
Another angle is that although rich people engage in lots of high tick risk activities, being outdoors on all their land, blood sports hunting shooting fishing for leisure, they are probably a lot less likely to go without prompt treatment and therefore to development complications. So it’ll very much be a minority of a minority.
Also do we have to hex someone for this to work?
Oh dear
Maybe it would be in these philanthropists collective best interest if they were to be taxed instead, and we all got functioning healthcare and timely research?!
In which case maybe the Drs could afford to believe us when we say we’ve have exposure risk or have symptoms that need treatment?
Maybe…..
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jonathan_h
Established Member (Voting Rights)
I believe Lyme misdiagnosis and mistreatment is an under-appreciated, urgent problem for the global ME/CFS community. My impression, informed in part by my own experience being misdiagnosed and mistreated for Lyme by a well known “Lyme Literate” doctor, is that someone with textbook ME symptoms, and, in my case, even a clear viral trigger, is virtually guaranteed to be diagnosed with Lyme by these practitioners. Almost always, as was my case and as I’ve heard so many times from North American people with ME, the “confirmatory” evidence was from an Igenex test—an alternative lab recommended against by American medical bodies due to its shocking rate of false positives.
Inevitably, people are prescribed expensive supplement regimens and often lengthy courses of antibiotics. I myself was prescribed nearly 2 years of IV antibiotics through a PICC line. I was soon after diagnosed with Crohn’s disease and ulcerative colitis which I’ve been told raise my risk of cancer and for which I’ll always need to take medication. I would be surprised if this wasn’t related to the antibiotics. It was the early 2010s: I was 16 years old at the time, had classic ME symptomatology following mono, and was told by this well known Lyme doctor (coincidentally, the son of an Igenex founder!) after years of antibiotics and alt med hadn’t helped me that “Western medicine can do nothing more for people like you right now.” I haven’t seen anything since to suggest his dangerous ignorance isn’t typical of alternative Lyme practitioners.
Inevitably, people are prescribed expensive supplement regimens and often lengthy courses of antibiotics. I myself was prescribed nearly 2 years of IV antibiotics through a PICC line. I was soon after diagnosed with Crohn’s disease and ulcerative colitis which I’ve been told raise my risk of cancer and for which I’ll always need to take medication. I would be surprised if this wasn’t related to the antibiotics. It was the early 2010s: I was 16 years old at the time, had classic ME symptomatology following mono, and was told by this well known Lyme doctor (coincidentally, the son of an Igenex founder!) after years of antibiotics and alt med hadn’t helped me that “Western medicine can do nothing more for people like you right now.” I haven’t seen anything since to suggest his dangerous ignorance isn’t typical of alternative Lyme practitioners.
I'm sorry for your bad experience @jonathan_h .
Dangerous ignorance of what? ME/CFS? Sorry, don't mean to be dense.
Dangerous ignorance of what? ME/CFS? Sorry, don't mean to be dense.
