Possible Relapse + My Story

Hi All,

I am new to this forum so to start a little background. I started getting sick with strep throat in 2013. It began happening more and more frequently (about every 4-6 weeks). I did not have insurance at the time so I just kept going to the clinic and getting antibiotics. After about a year, I was starting to feel sick all of the time. Lots of joint pain, mostly in my hands in the morning. Then spread to my hips and ankles as well. From there, the stiffness and muscle aches made it very difficult to walk.

I finally went and saw a GP, asked to be tested for lyme (came back negative). She sent me to a neurologist. By this point the neurological symptoms were getting bad. Night terrors, anxiety, emotional instability, crying, ringing in my ears, pain in my ears, along with throat pain, neck pain, fatigue, brain fog, ....just to name a few!

After a few more doctors I ended up with an ENT who removed my tonsils (August 2015) which made me feel MUCH better for about 2 months. Fed up with western medicine, I moved on to holistic medicine (teas, acupuncture, etc). Nothing helped. I eventually found a list of Lyme symptoms on ILADS and I had all but 2. Convinced I had lyme I found a doctor willing to see me.

In August of 2016 I was clinically diagnosed with Lyme Disease. I did 3 months of doxy. Then I relapsed in February of 2017. 3 more months of antibiotics. Cured! I felt like a new person. Still lots of pain and tough days and a slow climb, still no extreme physical exertion, but so much closer to my old self.

The past couple months I felt as though my progress had stagnated. Then some of my neurological symptoms started coming back. I assumed just herx.

This past saturday night I became almost suicidal. Out of nowhere. Sobbing at work (I am the GM at a restaurant in Brooklyn). Neck pain, headache, extreme fatigue, stiffness. Worse than I've had in the past year.

I'm still in bed. Not too much joint pain, and the emotional instability has tempered. But the fatigue and headache cannot be beat. Has anyone had a herx like this after so long of everything being so mild? I am at a loss for what to do and really just hoping it is herx and not a relapse. Any advice?

I agree with Girlie that your treatment was insufficient to heal. The good news is that your illness is responding to antibiotics (abx).

Suggest to your doctor to give you minocycline. It is in the same class as Doxycycline but it works much faster. When I take Doxy I don't feels the effects until after two or three days. Mino only takes hours and I can begin to feel the benefits. You also need to talk to your doctor about combining two or more abx together as this is the recommended protocol and it just works better.

By the way, sounds like either Lyme or bartonella are in your brain, thus the reason why you feel suicidal and are experiencing CNS/brain issues.

Please hang in there. You will get better.

Thank you for all the responses! Although I did have a LLMD, it seems as though maybe he was not the best? I did not mention that the second round of antibiotics was not Doxy, but Clarithromycin and something else but I don't recall the name. I was able to get an appointment with my LLMD at the end of the month.

In the meantime, I saw my GP (who is amazing, after MANY GPs who refused to believe that I even had Lyme/that chronic Lyme exists). He is running some blood work. He also started me on weekly shots of Penicillin to see if that helps. Have any of you done this?

I will have to talk to both my doctors about Minocycline.

As far as work goes, my partner owns the restaurant where I work, so I have been very lucky with being able to take time when I need it (even in the middle of a shift). I don't think I would still have a job anywhere else. But I do think it's time for me to try and find something less stressful so my body can heal.

I do not have an issue with my insurance and my antibiotics so far,but finding a LLMD who takes my insurance is another story. If anyone knows of a good LLMD who takes insurance off the exchange (emblem health HIP) in the NYC area (willing to drive out of the city if need be), it does seem like I need to look for a new doctor....