Hi Laur3 - welcome to the forum! I'm sorry you have to be here but I'm glad we can help!
It's such a shame that your story is all too common these days. Once you have Lyme and learn all about
it, it seems so ridiculous how little trained medical professionals know about
this disease! With a case as clear as yours, it's a shame no one took the possibility of Lyme seriously.
I agree with the others - you need an LLMD ASAP. In the meantime, if it's at all possible, maybe your regular doctor can give you more antibiotics? It's up to you but I'd think that some treatment is better than none for the time being. I think most people (myself included) usually take a combination of antibiotics to target it in all of its forms, whereas if a pcp is going to treat it at all, he/she will usually only prescribe a low dose of doxy or something similar.
It's just my opinion, but if the extremely expensive treatments aren't making you feel better, I would probably stop. Are you getting any indication that what's being done is helping?
One thing PCPs are usually pretty good at is prescribing things for anxiety or sleep, if you're interested in taking pharmaceuticals for those sort of things. Anxiety, and difficulty sleeping, are usualyl pretty common with Lyme as symptoms, and also of course as conseqences of the stress of being sick and trying to figure out what to do about
I'd also suggest starting a new thread entitled, "Looking for LLMD in Niagara," that way more members will be able to see that you're looking for a doctor. You'll also want to make your email address available in the profile section, that way members can send you personal recommendations (we're not allowed to mention doctors' names directly on the forum).
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at: firstname.lastname@example.org
If you'd like more doctor suggestions, you can email stephanie at: email@example.com
You can also go to: www.turnthecorner.org/bod.htm
if you want to learn a little bit more about
You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74
You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Co-Moderator, Lyme Disease Forum