Chronic Lyme disease - discussion thread

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The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Absolutely. The advocacy community commonly argues that chronic Lyme disease is grossly underdiagnosed and is responsible for an enormous wide range of illnesses. The community also promotes legislation to shield CLD from medical board discipline and medicolegal liability from dangerous unorthodox practices to mandate coverage of extended abx.

 

I am always taken aback when I see such perspectives from people I respect.

That's because it well may be.

Can be. But not in a vacuum. Most Lyme clinicians insist on some sort of serological proof, not just symptoms. Certainly the ones I follow usually do.

Well, yes, and you consider this bad why? Protecting any clinician who is willing to treat with abx longer than the orthodox two to three weeks?

What does this mean? Like, bleach and such? You really think dangerous unorthodox practices are typical in the Lyme community, and do you think there is legislation seriously afoot to protect such exceptionally rare practices? And what in the world is wrong with ensuring coverage for extended antibiotics especially when they help so many?

Support groups may get it wrong some times, but they often get it right - when no one else would have gone there. I'd be reluctant to vilify any advocacy without first walking in their shoes. PWME advocates often come by this knowledge the hard way themselves.

 

@duncan

I'm not comparing it to bleach. My biggest issue is the overly misdiagnosing of patients who are mislead by militant social media groups.

I have not walked in the shoes of chronic lyme patients, but I had a best friend who was misdiagnosed and had a PICC line inserted for 9 months, took numerous rounds of abx prescribed by 'lyme literate' doctors in California that made him worse- the treatments destroyed his gut. He never had lyme, and passed away in 2016.

 

@Mij , I am sorry for the loss of your friend.

 

From time to time people show up in my group asking if they sound like someone with ME/CFS based on their symptoms. And there are a few people who always say "these are Lyme symptoms, don't trust the tests and go to this one doctor, she is the only person in the whole country who can diagnose it". (They never join any of the other conversations on ME/CFS or advocacy or anything.)

And then everyone comes back with a Lyme diagnosis and start telling others they have Lyme and they should go to that one doctor. No one has a history of tick bite though or otherwise suspected Lyme and the explanation is: because it can be transmitted sexually, you can be born with it if your mom has it, entire families are infected like this and have been for generations etc etc etc.

To be honest, as these people never contribute to anything else in the group, other than telling everyone they have Lyme and should visit that one private doctor, I started removing them. It was only a few weeks ago that someone in my group turned out to have myasthenia gravis. Imagine if she or anyone with a different issue gets a Lyme diagnosis from this doctor and stops looking further thinking they have the answer finally. I cannot risk this happen as this does look like overdiagnosis to me too.

(The above is about those specific types of people and not everyone who has issues in connection with Lyme, of course.)

 

@Wyva and @Mij, Im sorry I don't want to derail this thread, but there is a logical fallacy about applying exceptional occurrences to broad ones. Unfortunately I cannot for the life of me recall it.

Why do you imagine these foolhardy sick patients buy into what you seem to think is BS? Because they're blinded by the huckster fraud Lyme "expert" in front of them? Because they are so desperate for a firm diagnosis they will accept any one from anybody because it validates their symptoms?

Like pwME, Lyme patients frequently can think for themselves.

 

Desperate sufferers who believe they have exhausted the therapies offered by conventional medicine sometimes look elsewhere for help. They often take their cues from the media, which trumpet each small trial result as a major breakthrough, even in the absence of rigorous scientific testing.

 

Well, yes, I suppose to a certain extent that's true. But your picture is so incomplete it does a disservice to the thousands upon thousands of people with Lyme who HAVE done their homework - many of which satisfy the 2T diagnostic protocol and have had the conventional treatment protocol fail them. There are very good reasons - at least to me and them - that they eschew orthodox diagnostic and treatment rules of thumb. For them, as good enough as those reasons for which we shun the BPS school.

 

Patients (with any kind of terrible disease but especially of unknown etiology) can be desperate for an answer, hence we are in this CCI thread to begin with.

 

Yep. But the idea that Lyme diagnoses are handed out like candy with no concern about serology is pretty much the stuff of propaganda, at least in the US these days. I cannot speak to Europe.

It's all about what we know and what we don't. The bottom line is we don't know as much as orthodoxy would like us to think. So, many clinicians and patients are swimming around trying to fathom bits of clinical flotsam as best as they can. Part of that is serology - which means you have to understand where the current mainstream protocols come up short - and why. When I say why, I mean more medical politics than medicine.

Part of the problem is that real meaningful research pretty much came to a halt after the RCTS of the early 2000's (I'm not counting Fallon's). Many feel that should not have been the case.

 

https://twitter.com/user/status/1766190442641498255


More about this here:
MIT Technology Review: Tackling long-haul diseases

 

Thank you, @Hutan. Although the study technically concerns Lyme, it's the scanning technique, and the purported brain inflammation it suggests, that drew my attention. The Johns Hopkins press release seems to focus on that more than Lyme as well, although that is debatable:

https://www.hopkinsmedicine.org/new...ted-with-post-treatment-lyme-disease-syndrome

Lyme was pretty much incidental. It was the brain inflammation, and the associated scanning technique, that I seemed to recall having relevance to pwME. Of course, the Nakatomi study was on my radar.

Does this PET show inflammation? It's beyond me. But I like to think so. If debris from a bacteria could result in this, why not a viral fragment, why not either eliciting autoantibodies resulting in glial activation and inflammation? So that a herpes infection, or enteroviral infection, or parasite, or fungus...can this technique demonstrate - or at least suggest - a resultant inflammation of the brain?

For many of us, it sure FEELS like brain inflammation - if one could actually feel that.

 

Merged thread

UK: Lyme disease from tick bite leaves Wiltshire woman on drip

"Friday 12 July 2024 at 6:34pm

A young woman from Wiltshire says she has to spend hours on a drip nearly every day after being bitten by a tick at the age of 19.

Yasmin Watling, who is now 25, did not see the tick itself but discovered an enormous red bullseye rash on her leg and realised she may have been infected with Lyme Disease.

She went to the GP but says that, unfortunately, she was prescribed the wrong antibiotics and so did not get the timely treatment she needed.

In the years since, Lyme disease has had an enormous and negative impact on her life - leaving her with extreme fatigue, brain fog, memory loss and neck pain among other symptoms."

More here:

https://www.itv.com/news/westcountr...oman-struggling-to-go-out-due-to-lyme-disease

 

Embarrassingly biased, IMO, if only because they open with the ALDF. Even the description of Lyme symptoms is comically skewed.

 

What is the purpose of this article? So many mixed messages.
It is a contentious issue in Australia as authorities say it is not transmitted by ticks there but there are advocacy groups that say it is.

It also didn’t mention Alpha-GAL that a small number of people with Lyme Disease develop and can be life threatening if they eat mammalian meat / by products. It is definitely more widespread in the USA. A cousin contracted it in Arkansas from a tick bite from a bet bunny & she also now has Alpha-GAL.

 

I have contributed to a couple of threads on this site since I joined but this is by far the most relevant to me.
I have been diagnosed with a Borellia infection although the strain has not been identified. Lyme disease is Borellia burgdorferi but there are about 6 strains of Borellia that can cause Lyme-like disease and some of those are of European origin where Lyme disease is American.
Diagnosis was through microscopy with the visual presence of spirochetes in the blood.
I had no obvious tick bite but I was bitten by something whilst in the Canaries which resulted in swelling and infection. I knew nothing of Lyme disease and as I was away from home I didn't seek treatment at the time. Some 3-4 years later with increasing arthritis, NSAIDs triggered the start of the symptoms.
As I was tested and diagnosed privately, my GP and subsequent others have not really believed the diagnosis, even opting to do the Elisa test which came back negative. Unfortunately this test and the Western Blot test usually do prove negative as Borellia are pleomorphic so can survive without a cell wall thus avoiding the immune system...so no antibodies.