16 years finally diagnosed

16 years ago I was told I had Lupus. For those 16 years I passed from doctor to doctor who claimed I wasn't sick enough and wasted their time, that I was crazy and it was all in my head, or that I had something else entirely (fibromyalgia and chronic fatigue were most common). So finally after lots of angst, I researched a doctor how showed me instant empathy and did a litany of tests. I was shocked to hear him say that I didn't have SLE, but Lyme Disease. Now the fun begins. After my first round of antibiotic (Doxycycline) the symptoms are coming back - dizziness, chest pain, joint pain, neuropathy, fatigue, sleeplessness, eye pain, tooth pain, on and on. My doctor's office told me I have to wait 6 months for my next visit to see if the treatment worked. Am I on the wrong path? I'm confused and scared from everything I'm reading online (I know, it's a bad idea to Google something like "chronic Lyme disease" and stuff like that). I've had these issues escalating for 16 years. I've had three preemies, my gallbladder removed, frequents trips to the ER for chest pain and heart palpitations. I'm starting to get nervous that this is only just the beginning of a long, hard 16 more years. I guess I just need a little hope and advice.

Hi lizel96,
I just want to congratulate you on getting a definite diagnosis. That is a huge step forward.

Your increase in symptoms is a good sign, in a way. It is called a Herzheimer reaction. It is caused by an overload of toxins in your body. Detoxing methods and supportive therapies can help.

But it is an indication that the antibiotics are working but you can't just stop treatment and wait for six months. A long held infections such as yours will need a skilled and dedicated doctor.

I strongly recommend that you find a Lyme Literate Doctor. They will know how to get you back to health -- a short course of antibiotics is not enough, I assure you.

But do take heart, there are a lot of people in your situation that have found their way back!

I'm sorry, I have likely been infected at least 28 yrs. people say there's hope for me, so keep your chin up! I was just finally diagnosed last year with a CDC positive western blot. Infectious disease said it was a false positive because I had all IgM bands but had symptoms since early childhood, so it couldn't possibly be that. I am looking for an LLMD. I've been on one antibiotic and supplements here and for a almost a year. It is hard and scary but I'm told I can improve with the right help. You will get through this.

Welcome lizel! I'm sorry you got the runaround like so many Lyme patients get. It's good it was caught before it went on any longer. Stick around and keep asking questions!

Are you detoxing your body? It's very important to do with on antibiotics .

I am really sorry that it took the doctors and health system so long to realize it was Lyme, I see more and more of these stories everyday, and it breaks my heart.