5 years with Lyme

Hi, I'm new to this site.
I got bit by a tick without knowing it. I had a red circular mark that didn't want to go away, didn't hurt though. Started feeling poorly soon after. I've always been healthy so I started looking into why I felt so bad.
Dr. said it COULDN'T be Lyme Disease because it isn't here on the west coast! I believed him because I didn't know any better, but he couldn't find out why I felt so sick.
I had to begin the process of ruling out what it wasn't to see if I could find out what it was. I found out that if you don't have a common, easy to diagnose disease you're kind of on your own and have to become your own doctor. It took a year and a half and more doctors, appointments and tests than I can count to finally get the answer.
I never tested positive on the western blot test, but finally got the answer from the more advanced and specific test for Lyme.
My Lyme doctor says my story is fairly common for Lyme patients, misinformation, misdiagnosis and lots of time and money spent before finally arriving at the answer.
I've been through more antibiotics than I even knew existed, mostly in pill form but have recently been doing them via infusion. That is until two weeks ago. I have started a treatment process for parasites and am about half way through it now.
I'm still hoping to feel better. I'm taking lots of supplements in addition to my medications and several detox methods but have not yet found the magic combination to get me back to where I was before that lousy bug bit me.
I'm encouraged to know there is a group here that is sharing information about Lyme Disease, hope I can contribute.

NitaB hello and welcome!

We are a compassionate and knowledgeable group with an understanding of what you are going through. We are so glad you are here and look forward to hearing about your Lyme journey.

Since you are new to the site, please visit the 'New to Lyme?' thread, it's the top thread on the forum.

If you are trying to locate an ILADS ​(International Lyme & Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, please be sure your email option is enabled.

​Also, if you are looking for a llmd in your area, you can also start a new thread 'Looking for LLMD in (fill in your city, state.) Someone will respond to your request asap.

Again, welcome! Ask all the questions you need!

I am so glad you have a lyme doctor and he sounds knowledgeable. What a plus.

There is not magic combo for treating lyme. I'm so sorry to say this. We all wonder what everyone else takes so we can get well. Ultimately, we each find our own combination of meds or herbs that get us well. Since we all were not bit by the same tick and we all do not have the same DNA, we all take something different.

I had lyme and treated it and now my lyme is not giving me any symptoms for over a year. Hubby got lyme symptoms in November of last year and he is treating.

Both of us are treating with the same herbs and both of us take different amounts of those herbs and he doesn't need some that I needed and vice versa.

With that being said, it is always helpful to hear what others are doing and trying. You never know what might help you and there is nothing hurt in trying.

Hang in there and keep asking questions.

I was treated with antibiotics in pill form for almost 3 years. Some seemed to help others had no effect that I could tell. After I started having trouble with my gut, my Dr. suggested that I take them in IV form. Then 8 months ago I had a PICC line installed and used it until just a few weeks ago when my Dr. switched me over to a 5 med parasite treatment which I am taking currently.

Nita,

Welcome. I'm sorry that you have Lyme but happy you found your way here. Your story is very common. Most of us have been to numerous doctors and told we are 'normal'.

This board is a lifesaver. So many wonderful and supportive people on here.

I wish there was a magic bullet. In fact I'll read something on here and order it thinking if it worked for them, it will work for me.

Sounds like you are on the road to healing. Stay strong I believe we can heal.

Ask away, Lyme is a very steep learning curve.

One thing I read on here that is so true and made me laugh is "Lyme is the one disease where the patient has to heal themselves." So true - with a little help from our friends.

Welcome. Your story is all too familiar for those that are LL (Lyme Literate). I hope to go into remission sooner than later. My symptoms are controlled by careful diet (think: Ketogenic or Paleo.) If you want yet another perspective on this bafflingly complex disease check out my blog/website at www.borreliaburgdorferi.space This is where I write when the fog clears interstitially. Good luck with some of those doctors, maybe you found a good one.

Post Edited (borrelioburgdorferii) : 4/10/2017 11:55:47 PM (GMT-6)