No advice as I was just diagnosed with it but I will keep you in my thoughts and prayers.

God Bless

Hi, kes. Sorry to hear that you are going through this. It's nice that you are seeing a neurologist, as specialists sometimes can help with specific symptoms of Lyme and can help rule out other causes for symptoms. In addition, you definitely need a Lyme-literate medical doctor. Some of these are infectious disease specialists, but most that I have found are integrative or functional medicine doctors. Oftentimes they have to practice independently (and sometimes without taking insurance) in order to treat, prescribe, and test in the ways that are most productive for Lyme disease, so you will need to do some digging online (do general searches but also try ILADS) to find someone. A doctor without experience treating Lyme may put you on antibiotics (possibly not even the most effective kinds) and tell you that you are cured regardless of what you are experiencing because that's what insurance companies cover and that's what many medical institutions still believe. Your neuropathy and joint pain are probably Lyme, so testing by specialists might tell you over and over again that you're fine even though you're clearly not. It's actually really good that you have positive tests to show providers - many Lyme sufferers don't - so you might have an easier time getting taken seriously.
So my advice: 1. Find a Lyme specialist, and don't get stuck in the weeds on individual symptoms with specialists. Lyme is a full-body illness that sets up residence in areas that differ from person to person, so many specialists might treat symptoms but won't help you get better. For example: I saw neurologists for years who tried to treat my migraines with multiple pharmaceuticals that just never worked; once I realized that I had Lyme and that was causing the migraine-like headaches, it made sense that migraine meds don't help me.
2. Epsom salt baths to detoxify as bacteria die off, and reducing processed food and toxic personal care and cleaning products. Don't give your body more stuff to fight and clear out.
3. This is a serious illness, and you have to accept that your life will be very different for a while. Easier said than done, of course, but reach out to your network for emotional support and practical support. Consider therapy - getting help for hard things is a strength, not a weakness. Have things delivered instead of running errands, and let your house be messier than usual - really give yourself a break. It's not selfish to make your wellness a priority!
4. Educate the heck out of yourself about Lyme and its many permutations and co-infections (because Lyme is different for everyone, effective treatment is different for everyone, and most people have at least one co-infection working against them alongside Lyme). This is a poorly-understood illness, so you have to be your own fierce advocate.
5. There's no one path to wellness, and be skeptical of anyone (or any online program to buy!) that says otherwise. Things to try and/or talk over with providers: acupuncture, many different herbs (do your research - herbs are serious!), rife machines, ozone therapy, infrared saunas, IV immunoglobulin, oral and IV antibiotics, non-pharmaceutical antibiotics (my doc likes formulas by Byron White), anti-inflammatory diets, body brushing, melatonin for sleep, lymphatic massage, bionic photon therapy, Buhner protocol, Marshal protocol, Cowden protocol, Klinghardt protocol, tai chi and qi gong, probiotics, vitamins and minerals....
6. Learn about related disorders that can be treated, such as mast cell activation syndrome, MTHFR mutation, and postural orthostatic tachycardia syndrome (POTS).
All the very best to you!

I would just say.. be careful about therapy. If you go to therapy, choose someone who acknowledges lyme or who is open to the possibility. Otherwise, it will only amplify everything you already face in the outside world, of being misunderstood and mistaken for something else.

Thank you, this was very helpful, MRI rescheduled for Monday, then Spinal Tab on 1-3-17

Hi Kes, You have been given some good advice here. First off, Happy New Year. I know this
is not a 'happy time' but I do feel we need the emotional support of one another. Next, about
the therapy. I have gone for some four years and have found it very valuable. My therapist really
didn't know about Lyme, but I took the person a copy of "Under Our Skin" a documentary about
Lyme to get the therapist's reaction. The therapist understood it. Have you seen it?
My person is a good listener and a kind and informed person. So, in some ways I feel I
have educated her. I don't think we can expect too many therapists to be fully informed about our illness, but I feel if they're empathetic and open to what we're talking about and give us good
support, that that's the main thing.
Good wishes with this testing and hang in there.

Thank you all for your input. Last week therapist suggested meds for depression and anxiety, so we will see what happens, waiting on spinal tap results know. The Lyme specialist also waiting for results before setting up appointment. Have a good day and be carefull

spinal tab results where good, now doc wants me to go to an arthritist doc? Going to Jefferson next week, maybe i will have better under answer to all of this. Sorry for spelling errors, noticed this lately? Have a good day all.

Amaryllis had a lot of good advice. Lyme is very confusing, overwhelming and difficult to treat. I've been sick for 22 years but only diagnosed with Lyme a year and a half ago. Naturopathic doc has been the best in helping me. I also just got back from hyperthermia treatments in Germany. Best of luck in your treatments.

Hello there, I looked carefully into your description of your symptoms. I am sorry to hear that you have been ill for so many years. Your symptoms should be in the third stage, and there are a lot of complications. Joint symptoms such as joint pain arthritis or chronic invasive synovitis in knee elbow large joints.I was a Lyme disease patient once, after few years, I found out a serial herb medicine which called DR ZHANG. They’ve been doing a medical study on Lyme disease by using herb medicine for a real long time. By using their medicine, my symptoms has been greatly relieved. And You can find helpful help on there website www.hepapro.com. Wish you get well early!