For most middle-class, full-time workers out there, insurance has gotten more, not less, expensive. I feel for these people, and I’m not trying to say what they are going through is cool AT ALL. That should not be happening.
But I want to point out something that is also happening here in the US, has been happening for quite a few years now, and too many just do not know about it.
I have listened to many-a-Lyme-patient-story over the last 5 years. The below is a typical example, though there are variations and those NOT typical of course.
Patient starts feeling sick, ignores it until the symptoms get to be too horrendous or too multiple and varied that they just cannot ignore it anymore. Patient goes to family provider (MD, NP, PA-C, DO, etc.).
Family provider does work-up for various things, lots of lab tests usually. Everything comes back normal. Family provider suggests patient is just stressed, depressed, needs to sleep more, exercise more, etc.
Patient repeats steps above until there is an answer, sometimes seeing specialists for more tests, etc.
When they are finally diagnosed with Lyme disease and put on antibiotics, they start feeling better. Family provider says they cannot prescribe anymore antibiotics because the IDSA Lyme Guidelines say they are now “cured,” but if they still feel sick, they have “Post Treatment Lyme Disease Syndrome.” And they just have to live with the residual effects, whatever they may be. (PTLDS was only a guess/theory and doesn’t have any back-up evidence whatsoever by the way).
Even if continuing antibiotics make them feel better, the provider tells them the IDSA (or CDC) says that is probably just a placebo effect. Memory troubles? Everyone gets those. Exhaustion? Sleep better. Insomnia? Here take this medicine.
Even though the antibiotics could be clearing up the underlying cause of the problem, they now want the patient to only take symptomatic medicines.
IF the provider, though, does choose to continue the patient on antibiotics (as they are helping), the provider could face losing their license/fined/bankrupted/etc., and the stated reason is something like “treating outside the guidelines.”
So if this treatment will not be covered by the patient’s insurance, that is similar to what many people (with different diseases) go through.
But Lyme gives you this kick in the gut: These patients are many times not able to get additional treatment, no matter if they can pay for it up-front, out-of-pocket, all in $20 bills, whatever they want you to do. The provider cannot prescribe it.
So there’s the patient, extremely ill, provider wanting to help and being told, quite crazily, to stop. Or else.
Much of this has to do with faulty research, evidence-empty guidelines, vaccination money (that didn’t pan out anyway), terrible ego issues, and insurance companies trying to cut costs.
The power of the insurance companies to not pay (or file charges against these providers) can go away pretty darned fast if the guidelines are thrown out, updated to reflect what the evidence shows, or if providers use ILADS Guidelines instead.
Yes, there are OTHER GUIDELINES for treating Lyme. Imagine that.
But these days providers don’t want to treat any chronic illness, much less a “controversial” one.
And for those still reading, another huge help would be a better test. However, this little bug has so many different strains, can change form, is actually really good at hiding from tests, immune systems, medications, you name it– it just isn’t going to come quickly (or cheaply) enough for most patients yet.
So the only way to fight this sort of thing is by information.
One of my favorite sayings “Knowledge Is Power.” I truly believe that.
So if you do one thing in 2015: Learn about Lyme. The way this disease is becoming more common (300,000 at least a year in the US alone; that’s over 800 a day, and kids get it A LOT), you will need to know this information anyway.
The science is too far behind to make much of a dent before someone you know gets it.
Need a place with more info? ILADS has a great website– start there!
— Loon Out