Are your symptoms Lyme disease?
The dangerous myth that Lyme is often misdiagnosed as ALS can only drain your wallet and your health, if you have ALS for real.
I've had disseminated Lyme with neuroradiculitis and facial palsy. My husband died of ALS. There is no confusion about which is which if you have standard exams and testing, including an EMG, in which ALS and Lyme are NOT going to produce anywhere near similar results. A lumbar puncture is not routinely used to diagnose either ALS or Lyme, nor are non-FDA-approved lab tests (for cash that might be better spent on whatever is actually wrong) needed to tell the difference.
Lyme can be treated empirically (using medical history, tick exposure, symptoms, not just labs), whatever the test results. Chasing a positive lab result (present equally in ~3% of PALS and non-PALS) won't improve your clinical outcome from a correct dx, which is really not hard to come by so long as you are not taken in by quacks.
You have probably heard that the services of "LLMDs" — who often recommend prolonged treatment — are cash pay because your health plan doesn't pay for junk science.
But there are greater costs to treating someone for Lyme that they don't have or over-treating the version that they do have. Over-treatment with herbs, other supplements, and antibiotics will only accelerate progression of pretty much anything if only due to the energy required to metabolize those compounds and the side effects/interactions of all these often untested combinations and dosages.
And, obviously, when it's ALS and not Lyme, you will delay treatments and equipment that could improve quality of life for PALS.
Despite what you may hear, ALS can and is "definitively diagnosed" every day. The scary-sounding "diagnosis of exclusion" means, as for many conditions, you exclude mimics one by one. If you have the worst headache of your life, someone might want to exclude a brain tumor or stroke. If you have a persistent cough, you'll take a Covid test, etc. I
n other words, there isn't a neon sign on the head of someone with ALS, or a brain tumor, or Covid. But a careful workup can reveal the correct diagnosis — not fundamentally different from the plumber who finds a leak or the electrician who finds the short circuit. They have made headway, but then they have to decide — are there more leaks? Will fixing the leak fix the problem? What else needs doing? Etc. However, it's very unlikely that they'll recommend tearing down your entire home to find where the leak is, or recommend repainting it as a way of fixing a short circuit.
For ALS, Lyme is neither the most common nor hardest alternative to exclude. However, due to the active alt-Lyme ecosystem, it's definitely the best-publicized and that's where preventable tragedies begin. When PALS chase Lyme cures as the solution to their limitations, their precious time, money, energy and health all suffer.
More background:
Other than a couple of case studies where best practices like a second opinion at an academic center may not have been followed, there is no published literature to support ALS as undiagnosed Lyme.
Lyme is always part of the ALS rule-out as appropriate; studies have found no greater incidence in ALS and no improvement with antibiotics.
The "ALS as undiagnosed Lyme" ecosystem is straight-up cruel, cynical quackery.
The people who so quickly recommend alternative Lyme/other tickborne disease testing typically fail to mention that they are advising people already facing considerable ALS expenses/stress to use:
- Possibly-cash lab tests known for false positives that may lead to unnecessary, expensive and potentially harmful treatment
- A cash-paid LLMD that will implement such treatments (herbs, antibiotics, and more)
"Alternative Lyme testing" would be embraced by health insurers if it proved that a lot of ALS was really Lyme, no? No need for Blue Cross or Cigna or UHC to fund hospital beds, power wheelchairs, BiPAP, etc.
The reason they don't fund it or recommend it? Because it's hucksterism. It doesn't separate ALS from Lyme. It separates PALS from their money, time, energy, and possibly health.
It does cost the other way. In one small study, 7 out of 24 patients had received an initial dx of Lyme when they really had ALS. No doubt they wasted precious time, energy, and money on that false belief. And where do you think it came from?
In a larger study, much "chronic Lyme" didn't show signs of Lyme, but did show signs of something else.