Hi Ella! Long time no see - and I'm so sorry to hear you got bit by a tick! Scourge of the earth! They are terrible little critters. I can't see deer in the same way now - and I spotted 3 fawns with their moms in our front yard this morning.
Sienne sent me an email while we were also in Scotland, and having terrible phone problems. But I'm home now and wondering what I can do to help you. Yes, my daughter's suffered with Lyme and co-infections (Babesia and Bartonella) for a long time. She's 27 now, was diagnosed at 21, and now we know she was infected at about age 6.
Tick bites very often deliver more than 1 disease in one go. And contrary to popular myth, time attached has no bearing. It's been proven that they can transfer some diseases in as little as 15 minutes. I don't know where the myth that it has to be a long time has come from, but it's well-spread, and also inaccurate.
Just in case anyone else reading this gets bit - your best first strategy after removing the tick (by pulling out the head with tweezers or a tick-removal tool asap) is to save the tick for disease testing. It's easier, cheaper, and more accurate to test the tick than to test people.
Being aggressive immediately is the best tactic. Our doctor (whose son got bit in a Portland city park) says a minimum of 6 weeks antibiotics immediately after the bite. You're well past that. I'm unclear about your timeline - I know you were bit in April. Were you given antibiotics immediately after the bite? Or was there a delay?
Getting accurate labs is a challenge. Eventually, after several inconclusive tests from Quest and other local labs, we opted to go with IGeneX, which is known to be the best in the US. The reason diagnosis is so difficult is that spirochetes do not remain in the bloodstream - yet blood is what we test. Typical labs are looking for the spirochete. IGeneX looks for DNA evidence that a spirochete has passed through. There is another company that does something similar, DNA Connections, but in the Lyme Community, IGeneX is considered the best. I would simply go with them. There are also more than 40 varieties of Borrelia, and local labs test for 1, the most common in the US.
I would also get the test for co-infections. Michelle's got Babesia, which is like malaria. It's a cunning little bacteria that stays in the bloodstream. It drills into red blood cells, implodes them from the inside out, and keeps the coating of the red blood cell on itself like a little cloaking device. The consequence is that your immune system doesn't recognize it as an invader because it looks like your own blood cell. That's the most common co-infection and it's treated with anti-malarials.
My daughter also has Bartonella, which also is the bacteria that causes Cat Scratch Fever. She turned up negative on the test for this, but she clearly has the symptoms. One thing it does is tunnel in the skin, creating what looks like stretch marks.
The fact that you're on the east coast should make things easier to get treated, but I hear that's not always true. Lyme is everywhere now - although I can't tell you how many people have told me it's not possible to get it in Oregon. Yet we know where our then 5 year old had been, and she had to have gotten it here.
The controversy over Lyme is about money - insurers don't want to pay for a chronic disease, so they say it doesn't exist. There are 2 prime professional groups - ILADS (International Lyme and Associated Diseases Society) and IDSA (Infectious Diseases Society of America). You want information from ILADS. The other is populated by insurance company execs, and they have had a tremendous influence on the lack of research into chronic lyme. Dr. Richard Horowitz (from New York) is my go-to for accurate information about Lyme - he's on youtube and has a fantastic book out called "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease."
If you have symptoms, assume you're still infected. Headaches, migrating muscle pain (one day it hurts in your arm, another day your leg hurts), brain fog (feeling you're dense at understanding), extreme fatigue, are all Lyme symptoms. Babesia makes people anemic and it messes with your thermostat. My daughter will put 8 blankets on her bed then complain that she's both sweating and cold at the same time. This questionnaire might help you decide what to do next:
https://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html It will automatically score it for you.
Borrelia passes into the brain within 6 months and headaches are often a first symptom in those who weren't cured right away. As you know, the blood-brain barrier makes it difficult to treat things in the brain, but it's not impossible. We've gotten a home hyperbaric chamber for our daughter to use daily - she's 1 year into what we expect will take 2 years to get her life back. We've done years of antibiotics, antimalarials, antiparasiticals . . . everything, and she sees a specialist once a month. If you don't have a good doctor, look into a naturopath. They are ahead of the game in the world of Lyme and tick borne illnesses. There is also a Lyme-literate-physician finder on
https://www.ilads.org/patient-care/provider-search/ that could help you.
There are also some facebook groups - mixed quality of advice - for those with Lyme. This one is fairly good.
https://www.facebook.com/groups/womenslymediseasesupportgroup/ I'm on one that is for people doing the newest treatment - Antabuse - that seems to kill Borrelia by interrupting its metabolic process.
Be wary of steroids - of course there are times one needs them - but they suppress the immune system and in people with Lyme and co, that can allow the other diseases to flourish. My daughter hasn't had a cold or flu in years because her immune system won't rise up to fight it. She does get flattened sometimes - maybe it's something like a cold getting her where she is just wiped out. Don't get vaccines right now either, if your immune system is suppressed by illness you can't make antibodies and they won't help you anyway. I know some with Lyme have had reactions to vaccines - we did vaccinate our daughter through all the childhood illnesses, not knowing she had lyme, but likely she didn't develop immunity and her doctor definitely doesn't want her getting vaccines now. Wait til you know you are well.
Hehe, you know me, I've written a book. Send me a message if I can help you more - you know I'd be glad to. I've lived in this world for 6 years now, and like FD, it's a whole other thing that you never knew anything about before you had to!! I hope you're doing well and that the antibiotics you had were enough to knock out the infection. If I were in your shoes right now, I'd get the IGeneX test for Borrelia and whatever co-infections are most common in your area, then go from there. It cost us over $1,000 out of pocket for that test, but that determined what happened next and gave us certainty where we'd had none before.
Big hugs, julie
PS, Thanks
@Sienne and Gabby (GA) for letting me know!
. We are all hanging in.
Sending healing vines! 
and healing vines from us all in Sootie’s Tribe,
He thinks cimmamum makes everything better 
He said to send his favorite Auntie Ellabean special Tobey hugs and love and for you alone, he will come out of KTSS retirement to give you a special massage!
