There is a reason many with Lyme always test negative over and over. Your body has stopped making antibodies and has stopped "fighting" so to speak. Lyme LOVES hanging out in tissue, and you'll only see it in blood when it is being "reborn". (Yuck).
In my opinion, fibromyalgia (something with "no apparent cause") as a lone entity would not cause someone to be in a wheelchair, to be bedbound, etc. I disagree that it would be progressive, or even a real disease on its' own. It's just a constellation of symptoms. I have fibromyalgia due to Lyme being the culprit. I've noticed many saying they had "fibro" before an AI showed up. I think Lyme can trigger those in some with the right genetic make-up. Fibro would NOT cause heart palpitations or mitral valve prolapse, for one, like many claim or IBS. Lots of medical conditions pop up around, before, or after a diagnosed of fibro.
Yes, I feel it is a lazy diagnosis and there has been an EXPLOSION of fibromyalgia it seems over the last 10-20 years and they do not even want to LOOK at bacteria or parasites as the root. I blame the doctors most of all, because one is supposed to trust their insight. You're right, they're not experienced with treating Lyme because they feel it isn't a long-standing illness. I have literally been harassed by some fibromites because they claim I wished I had fibro and not Lyme because it is "easily treatable". WRONG. People suffer and die all the time from it being untreated, and they blame it on some idiopathic cause ("heart attack", "meningitis", etc). As you said, many are told that the pain is psychosomatic and are just handed Cymbalta and shoved out the door.
From my understanding, when Lyme is IND that means "weakly positive". One band showing up means positive, it doesn't have to be the full five or more. Anyone can surely test positive, and be asymptomatic, but if they DO exhibit symptoms, then all signs should point to Lyme as the cause. GET COPIES OF YOUR BLOODWORK. BE YOUR OWN ADVOCATE.
Trust me, a year ago, I had no idea about any of this. The politics, the lack of knowledge of treatment, etc were never made apparent to me. I would have told you you were crazy and that it was a virus causing my fibro/CFS.
But now since I know my cause, I can do something about it. The road ahead is rough and unknown. I would have not have believed any of it either if someone told me the ramifications of what Lyme causes and does. I believed I did indeed have just "fibro", because if you key any symptom into and tack fibro at the end, people will say "Yes, it's a part of it!". I wonder how many have tick-borne infection and don't recognize it? I want to tell all these people to be checked by someone well-versed in Lyme unlike many ID docs who'd just laugh you out of the office. I've tried informing others because they shouldn't suffer like I did, they deserve a full life... but you can only lead a horse to water, as they say.
I urge everyone in this thread to at least email to speak to an LLMD. It may be out-of-pocket MOST times, but it would keep you from seeing doctor to doctor year after year, and put you on the right track to wellness.