Reading your story is like reading hundreds of others who have or suspected Lyme and got the same treatment----with small variations in symptoms.
First let me say---- none of us here are doctors. But many of us have been in your shoes and have gone on to devote much time to trying to help others wade through this morass of mis- and dis-information. And we certainly can't say WITH CERTAINTY that you do have Lyme or one of it's co-infections. But your experiences and symptoms are so similar to what many of us have had to endure.
I'm going to address and try to a answer some of your concerns first. This will be just a primer and I'll apologize in advance if my reply seems a bit brusque. That's because I'd like to hit the 'high spots' first----- then I/we will welcome further questions from you.
So----- PA is a state with a high rate of infected ticks. You already knew that.
1. A rash, of any kind, is only present about 50% of the time.
2. Many people never feel the tick that bit them. One stage of a ticks life is the nymph---- which is TINY and people report that they don't feel them.
3. A test done by any lab other than Igenex has a very high rate of error. I'm going to guess that you didn't have a test done there. Igenex tests aren't foolproof either but much better than a CDC sanctioned test.
4. I'm curious about the 'lyme specialist' you said you went to who said the test he wanted to do wasn't covered by insurance. Of course I don't know what your insurance plan is like----- but Igenex tests are covered by almost all insurance companies. Maybe that doctor meant that Igenex doesn't bill your insurance. That may be true, but Igenex will give you paperwork so you can send it to your insurance. Igenex always paid for mine.
5. There is NO test, ANYWHERE that will show if a person DEFINITELY does or does not have Lyme. I always had negative or indeterminate test results from Igenex but my llmd treated me for Lyme after doing many other tests to make sure I didn't have MS, lupus or other conditions. (You've already had most of them done-----so you're ahead of the game now.) My blood work always showed a picture of a healthy person, while feeling like road-kill!
6. Please tell me that you've kept copies of all your test results. :) If you haven't, please ask your doctor(s) for copies and then start keeping any further test copies.
If you wouldn't mind, would you please google Tom Grier then pick the listing that's from LymenetEurope. (Sorry I can't give the link----- forum rules here forbid that) Read his articles, please. They're written so laymen can understand easily.
One last thing------I'm fully aware of how people almost go broke testing and treating for this elusive disease. I understand that your finances are keeping you from getting tested and treated. That's a story repeated over and over and I don't have any viable suggestion for you. I can say, though, that many people have resorted to treating themselves with veterinary doxycycline (that's usually the first drug given for Lyme). I can't say I approve of that------ but it's a fact.
Below is a link to some more info on Lyme that's been posted here. Ricobord is the poster you want to read----- she's active here with detailed information. So much so that some people are overwhelmed by the 'brain-dump' of information--- LOL ---- but it's here and it's free!
Í'll stop now and await your answer and more questions.