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Lyme Disease Message Board


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Hi peter_j.

My apologies for not being able to respond sooner. I get paid overtime so I take every hour I can get my hands on. Last week I worked 89 hours! But if it wasn't for this job, I'd lose my health insurance, my truck, my house, etc.

So ... back to Bartonella.

I tested positive for Lyme, negative for co-infections, so my LLMD went after the Lyme with full force.

After a year or so of treatment, I didn't feel all that much better. I may have even been getting worse.

On a hunch, and despite my lack of test results, my LLMD put me on Levaquin. It is used to treat Bartonella but it is also a broad spectrum antibiotic, so who knows what else it can kill.

I was on Levaquin for 11 weeks with no difference in my symptoms for the better or for the worse.

Then, almost exactly at week 12 of being Levaquin, my Bartonella symptoms kicked in major big time.

First, I broke out in weird rashes all over my body, arms and legs mostly. Some looked exactly like bruises, purple, circular but didn't hurt when I pressed on them. They frequently came in pairs. Strange.

Other rashes resembled scratch marks, as if I was a little kid again, having a fight with my baby brother and we scratched each other. They had no scabs, weren't raised or itchy, they just looked like streaks.

Then, like clockwork, my original Lyme rash (itchy!!!!!, red, raised bumps in an oval on my right shin) came and went every 4 weeks. Talk about a classic Herx. In addition, I developed a surprised bulls-eye rash on my other leg - (had no idea I had more than one bite) - and to me that was proof positive that I had Lyme and Bartnonella. And that the antibiotic Levaquin was working for me.

Second, I had leg stiffness and foot pain. The foot pain is difficult to describe. When you take step with your right foot, your left foot rolls forward, heels first, toes on the ground, and gets ready to step forward.

Well, when I walked, I felt as if the arch of my foot would split open as I walked and the 'behind' foot arched and got ready for the next step. Very weird. So I developed a sort of frankenstein shuffle (so embarrassing!).

The pain was worst in the morning, but it remained all day.

A side effect of Levaquin is tendon pain & damage. I knew that this was not tendon pain.

I felt that the pain and the rashes were direct signs that Levaquin were working for me.

In addition, and maybe the best part, slowly my mind came back. I could remember things that happened 5 minutes prior, my concentration increased, I could talk to someone with out that 'deer-in-the-headlights' look. My memory started to come back.

I was on Levaquin for 9 months. Then for some reason (wish I could remember!) my LLMD stopped all my drugs.

I went downhill so fast it isn't funny. I had so many thoughts of suicide, etc.

Well, I'm back on treatment and I started Levaquin 5 weeks ago. The foot pain and leg stiffness came back already but so far, no signs of my rashes and no regular Herx cycle has began.

I look forward to seeing those rashes and the foot pain and the Herx every 4 weeks. That's proof that the drug is working.

Without a clinical diagnosis, I still think I have some Bartonella inside of me to kill and I'm looking forward to it.

I hope I answered some of your questions.

Feel free to post anytime - the folks here are great and they've seen it all!

Peace and health to you,
Mckie
:angel:





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