Going crazy in New Jersey! Please help!

Hi everyone,

I’ve been to a million doctors over the past few years trying to figure out my many symptoms, and I’ve been tested for lyme/rheumatologic diseases twice. My lupus and arthritis tests came back negative, and my lyme test came back with only one present abnormal band: IgG P41 Ab. I just don’t know what to do next!

I’ve been trying to find a good doctor in New Jersey/New York area that can help me and give me further tests. It seems every rheumatologist covered under my insurance does not treat lyme, and every LLMD I can find is so crazy expensive!

I should mention, I hike all the time with my dog, who is constantly getting ticks. It’s not too far-fetched I would have lyme, but I wish I could confirm it somehow.

If you’re willing to read them all, below is a list of my symptoms:
1. Ear ringing
2. Ear pressure/pain/fullness
3. Jaw clicking/cracking
4. Jaw, neck, back, and shoulders stiffness/pain
5. Bad stomach cramps
6. Diarrhea all the time (every day, 2-5 times a day)
7. Extremely tired and weak
8. Dizziness and sometimes vertigo
9. Nausea/vomiting when experiencing vertigo
10. Fainted once recently after a long run
11. Creaky/popping/super stiff knees (especially after running)
12. Hair shedding way more than usual
13. Recurrent bacterial/vaginal infections
14. Tingly/pins-and-needles sensation in calves/shins, forearms, and cheeks/under eyes (really random, sometimes a little painful, usually brief)
15. Strange bug bite from three years ago (a bullseye circular bite on my forearm. I was tested for lyme right away when I got this bite, and results of the Western Blot were negative.)
16. Symptoms last for weeks at a time, then disappear, then come back …
17. I used to run 25 miles a week, and when my symptoms are gone, I start to slowly build myself back up to that. But my legs feel like dead weight—I used to love running, and now it’s such a struggle to do even the shortest jog.
18. I sometimes feel like I am really going crazy! I cry hysterically for days with no reason; I feel drained and can hardly find the energy to move. When my symptoms start to pass, I eventually cheer up and feel better, but it always circles back.

If you know of any NJ/NY doctors that can help, please PM me. I’d love to hear any thoughts about my symptoms or anything at all! I really appreciate you reading through that terribly long description. Thank you so much!

-Jamie

Oh Jamie, I am so very sorry. You sure have a bucket full of symptoms and like K07 said, your bull's eye rash is a clinical diagnosis for lyme. Nothing else gives you a bull's eye rash. Very conclusive! Many of us here have had lyme tests that came back negative and we have done the merry-go-round of doctors. And some of us had to bite the bullet and pay the huge cash price for a LLMD because our insurance would not pay for it.

You do have options and fear not, we are here to help.

First, to acquaint you with our community we ask that you read the New To Lyme? .... Start Here! thread at the top. Full of information.

Second, if I were you, I would start detoxing. Lyme spirochetes are being born and dying in you now and those that are dying need a way to be expelled. We detox to give them pathways out of our body. All our organs that are filters help do this. We just help those filters along with what we call detoxing. These are not hard. Drinking water with a splash of lemon it in. Easy peasy. How about using a dry brush on your skin or a loofa before you shower? Another easy one. Take a probiotic? This keeps the flora of your gut in good shape. Do you like fermented foods like kimchi, kombucha, or kefir? Super good for you. Here are some more things you can do. www.tiredoflyme.com/detox-methods.html

Now third..... it really is recommended that you find a llmd. But there is the alternative of going on your own and trying to do herbs. It is not easy being sick and being your own doctor, I will warn you now. But, it is doable. There are protocols you can do:

www.lymediseaseresource.com/Protocols.html

I hope this is helpful.

Hi Jamie and welcome. You'll find good help and advice here and most importantly, people that understand what you are going through.

Hi everyone,

Wow, thank you SO much for all of the information. I can't believe how wonderful and supportive everyone has been in these discussions -- it is really so awesome to hear from people that understand and want to help!

You're all right--I'm going to take your advice and go to an LLMD. I've found a few with great reviews in NJ/NY, and I'll start a new "Looking for LLMD in/near_____" thread (thanks Girlie).

PeteZa, I love the idea of detoxing. I went out today and bought kefir and kombucha (yum, I love them both! I've never had either before. Plain kefir is especially yummy with honey). I also picked up some lemons and have started taking probiotics. I think this is such a great idea regardless; it can only help me feel better!

Really, thank you everyone for the support. You have no idea how great it feels! It seems like every doctor I talk to thinks I'm insane and just won't give me the time of day. I'm actually happy to at least put a name to it all.

I'll post an update when I hopefully can get in touch with a good doctor. Thanks again everyone, and I hope you're all feeling well and working with with great doctors.

Love, Jamie

Jamie, if you decide you want to start making your own kombucha and kefir, shoot me an email. I'd be happy to share my grains and scoby with you. Or maybe you are making it already? Either way, yes, it's a fabulous idea and I encourage you to ferment some veggies for a probiotic blast. So easy and so delicious.

I watched it and it made me realize that there are people so much sicker than I am. You'll cry, keep some tissues handy.

I had a similar story-got lucky and found a doc who works with this type of patients-my run used to be half marathons-I really miss them
by looking for things others simply don't-for me he found hidden dental infection ( my dds missed) and parasites. Not saying either are issues for you but I would see Dr Y in St. Louis and get tested-FYI he test different then most
You need a Doc who thinks outside the box and DR Y does
FYI he is a md and retired from US Army-he saved my life
Best of luck the body heals

Post Edited By Moderator (cd3764) : 4/2/2016 6:39:04 PM (GMT-6)

Thanks everyone! I found Under Our Skin online, so maybe if I can handle it I'll watch it later.

Tillybear, I'm actually not able to email you -- could you write to me with your recipes? I'd love to try them out!

-Jamie :)

Hi Jamie,

My son's one and only band was 41. He def has Lyme.

Don't be to afraid though. Find yourself a good Doc, start detoxing, and stay connected with our group. Your treatment will come together and soon you'll be on your way to getting rid of your symptoms.

Keep us updated. -Blessings on your journey

Leilex, I hope your son is doing better! It boggles my mind that patients can have an abnormal band present and all these symptoms and still be told they're negative! I'll definitely keep in touch; I think I've found a couple good doctors.

Magoo2, so glad to hear you're on the road to recovery. Thank you everyone for the support. It means so much <3

Congratuadolences. ..band 41 is a flagella ....i acually saw mine under microscopy before igenix... watch justinandcristie on u toob also.....its expensive disease but some have gotten their life back...remission