Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus. (2019) Strizova et al.

Internet-based self-diagnosis of Lyme disease caused death in a young woman with systemic lupus erythematosus.

https://www.ncbi.nlm.nih.gov/pubmed/30660803

Abstract

In the majority of cases, Lyme disease responds well to antibiotic treatment.

Nevertheless, some patients may suffer from chronic nonspecific symptoms such as musculoskeletal pain and fatigue, termed as a post-treatment Lyme disease syndrome (PTLDS).

Proper understanding and management of PTLDS may prevent from the incorrect diagnosis of patients with autoimmune, neuromuscular or other somatic disorders, where identical symptoms are equally prevalent.

We report a 37-year-old female with systemic lupus erythematosus (SLE) who was repeatedly misdiagnosed for a chronic Lyme disease and treated with tetracycline antibiotics before she developed an acute exacerbation of SLE and finally died due to multi-organ failure.

The internet encourages patients to ask physicians for serology testing for Lyme disease and to demand further antibiotic treatment.

However, there is clear evidence that positive serology does not indicate infection with B.burgdorferi and most importantly, antibiotic therapy for PTLDS is potentially harmful for patients.

It is crucial to follow the recent guidelines for diagnosis and treatment of Lyme disease and PTLDS to avoid the repetition of antibiotic regimens and misdiagnosing patients.

 

"The internet encourages patients to ask physicians for serology testing for Lyme disease and to demand further antibiotic treatment."

And then when your results come back negative the internet tells you that you probably still have Lyme and to not trust the testing and to get an alternative test. Then when that too comes back negative they tell you that it doesn't matter and that you probably do have Lyme disease anyways.

This was my experience with Lyme testing except instead of it being just the internet it was also an ME/CFS specialist who told me my alternative Lyme testing was positive even though there is no science to support such an interpretation of my results. Thankfully I did enough research of my own to conclude that the ME/CFS doctor was grasping at straws and that my test results did not at all warrant the Lyme diagnosis she gave me nor the antibiotics she wanted to put me on. I declined. Months later I was diagnosed with an autoimmune disease.

 

In the early days of my diagnosis, I received advice from local people telling me of a doctor who didn’t have the right to practice medicine but still gave advice to patients in regards to Lyme. This person diagnosed Lyme according to vague symptoms regardless of whether they were in contact with a tick and advised to go to a walk in clinic and say they were actually bitten and they needed antibiotics.

From Lyme facebook groups, they actually obtain their disability insurance by claiming they have ‘chronic fatigue’ and fibromyalgia, but then when patients with the 2 diseases show up to them they tell them they don’t have ‘cf’ of FM, that they have Lyme. And to boot they have the narrative that says that MS is lyme, als is Lyme, Alzeimer is Lyme. This is really harmful to the patients as described in the abstract above.

Part of the problem is that patients who believe they have Lyme go see ‘Lyme-litterate doctors’ most of which are naturopaths and not necessarily medical doctor who would go through their differential diagnosis and rule out certain diseases that can be similar in presentation.

 

This has not been my experience. In fact, after dwelling in Lyme Land for almost 20 years, I doubt it is the experience of most who contract a tick-borne disease.

The typical Late Stage Lyme patient, as far as I can see, tests positive on multiple bands, even multiple tests (and for multiple pathogens), but despite antibiotics, not only fails antibiotics after a while - and maybe even after some initial success - but to a lesser or greater degree, eventually begins to deteriorate while on them. This despite labs which suggest active infection.

In my opinion, the beleaguered patient - who is misused by fake doctors and who never had Lyme to begin with - is the unacceptably tragic exception; it's just that those exceptions are mischaracterised as representing the majority of the patient experience, thanks in large part to a handful of IDSA evangelists. That is unfortunate.

As part of any differential diagnosis, Bb should be entertained, and if in contention, tested for by someone who knows which tests to order, ie, the three FDA-approved metrics, and how to interpret those tests.

I suspect that for every yarn someone can relay about a patient being diagnosed with Lyme when she never had it, there are two of patients who were not even considered as Lyme candidates, and accordingly never received the proper tests, never got the proper diagnosis, and never caught even a whiff of the abx that might have made a difference before the disease converted to Late Stage Disseminated and ended any semblance of normalcy or a meaningful life. Narratives about off reservation shyster-MD's (who bottle and dispense Lyme diagnoses and therapy like snake oil) represent the exception, not the rule, if you ask me, and victimize the real Lyme patients and the good doctors who try to treat them.

 

The ME/CFS doctor who misdiagnosed me with Lyme is an MD with a good reputation in the ME/CFS community, not at all on the fringes. I do not think her intentions are bad or that she is meaning to mislead people re: Lyme but rather has herself fallen for the shaky alternative Lyme narrative that falls outside of current scientific understanding. I think it goes back to something that has been touched on many times and that is the fact that doctors don't like to tell patients...."I don't know what's wrong with you".

 

I'm uncertain as to what you mean here, @TrixieStix .

 

And then there was also the doctor in Belgium. For a time there, almost all the patients I had contact with apparently had Lyme, bAsed on testing done at the well known lab in Germany.

Being plagued by this illness, ME, shoves one onto a road of nightmares one never imagined existed.

 

This abstract strikes me as a little odd for a couple of reasons. I will try to explain why.

True. It's the classic 80/20 split, though, or at least that is historically pretty much the accepted thought. So, yes, a majority are cured, but 20% are not. With over 300,000 Lyme cases annually in the US alone, that 20% adds up to many, many chronically ill.

PTLDS is contested. Many Lyme advocates feel it's just a made-up label to slap on Lyme patients who are failed by IDSA-recommended therapy. It also arguably downplays the severity of symptoms.

Yeah, not really clear on who has a "Proper understanding..." of so-called PTLDS, let alone who can advise on its management.

How do we know she was misdiagnosed with Lyme? Not sure we can deduce that from the little info in the abstract. Also, why can't someone have Lyme AND Lupus?

Well, the CDC advises if you want a firm diagnosis for Lyme, you need serology that conforms to the 2T. Yes, the CDC's website advising the 2T for Lyme testing is accessible through the Internet. Furthermore, if you test positive, receive abx therapy, and your titers go down, and then you retest after, say, six months, and your titers have risen, to the extent that you are once again sero-positive....What infectous disease doctor would not treat again?

Although technically correct - the 2T only indicates exposure - the first half of this statement is misleading to me and appears to be a clear contradiction of the CDC's position. The second half, granted, abx for any infection is potentially harmful for patients.

Last IDSA guidelines were back in 2006 or something like that. Now, ILADS guidelines came out in 2016 or thereabouts, but somehow I don't think they are referring to those...