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Was making great improvements then it all fell apart

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Lyme Disease
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Posted 3/15/2015 11:31 AM (GMT 0)
I having was doing great with my treatment and was up to walking a mile on my treadmill which is something i hadnt been able to do in 3 yrs. my dr added Rifampin and Clindamycin. I had only been on supplements and Augmentin. 1 wk after starting Rifampin i started having intense hip pain radiating down my leg where i was having difficulty walking. My muscles are extremely tight pulling my hips out of place and nothing i do will loosen them up. I didnt ease up after 10 days so i was told to stop the rifampin. It imptoved slighyly fhen started Clindamycin. The same thing happened to the point where i could barely walk around the house. So i was told yo stop clindamycin to see if it imptoved. Now i am a month out and am still seeing little improvement in my hip. Its like i went backwards a yr. i cant figure out if the reaction was actually from the abx or overdoing it. Could i have just stirred up the lyme and needed to continue with the abx to kill off? I am also questioning whether i am just having a liw potassium or liw calcium reaction. My labs are normal but at the low end. Anyone have advice? I did just try acupuncture and chiro which has given some relief. I just dont inderstand what went wrong,
Posted 3/15/2015 3:21 PM (GMT 0)
Bartonella is suspected based on symptoms. Labs were negative. We thought my hips were a herx from Rifampin, but it was pretty inyolerable, so i stopped to see if it was the rifampin and see if it would improve, but it hasnt. Stopped the rifampin over 4 wks ago. Just wondered if i just made things worse by stirring it up and then stopping. My herxes are typically muscle tightness and pain, but this is worse and slightly differs from normal herxes. Its very depressing.
Posted 3/15/2015 5:38 PM (GMT 0)
Rifampin is a drug that they worry about resistance. I know my doc told me that he never pulses it becuase of that. I've been on Rifampin for a few months and it is pretty brutal. I have the WORST herxes ever since I've been on it. I'm thinking I just don't detox very well- I can't seem to figure it out.

Dig deep and go with your intuition when making treatment decisions. What does your doc say? Mine usually always encourages me to tough it out and hang in there. But he isn't always right either!!!! My best advice is go with your gut feeling.

I'm really sorry you are having issues. I so get it. Rifampin is a tough one to be on :(
Posted 3/15/2015 5:57 PM (GMT 0)
My llmd wants me to try to push thru the herx, but also says if it's too miserable, we want to look at a different abx that is more tolerable. He wants me to have some quality of life. What i cant figure out is how i can go from doing so well walking daily to not being hardly able to walk at all. Its all due to muscle tightness and myofascial retrictions in my hips and leg. Can i make things worse by doing too much walking or could it have been the medication? Its just not improving after stopping the abx. He also keeps bringing up a picc line, but im not so sure i want to go that route yet. Has anyone had an experiencr with a picc line? I dont know much about them.
Posted 3/15/2015 6:04 PM (GMT 0)
I've been treating since June. For me, the only times I see true improvement is after being on a protocol that makes me feel worse. It was depressing until I realized that was the end result. It doesn't make the pain or the herxes any less difficult to deal with but there is a light at the end.
Posted 3/15/2015 6:09 PM (GMT 0)
I have no PICC experience. But I know a few weeks ago I plummeted.. I was doing SO WELL. I was feeling completely symptom free. Well, enough to be outside working. It lasted 3 whole days and then it turned on me. I got a fever of 105 and puked all night long. I just went kind of crazy and delusional. I was so disappointed.... It broke my heart. All of that progress and then poof... it was over.

I stopped taking everything and focused on detoxing. I'm still way worse off then I was before all of that. I'm back on all of my treatments now. I slowly ramped them up. My doctor said it's all about mountains and valleys. He reassured me that I would be OK and told me not to be scared of my treatments, I should be more afraid of not treating at all.

Take it slow, one day at a time. If you feel like it's not working then work with your doctor and keep trying things until something does. I totally get how crappy it is to be doing good and then have it all fall apart. I feel for ya :(
Posted 3/15/2015 6:16 PM (GMT 0)
So sorry to hear that. I think part of my problem is that i do have fears with some of the meds. and the reactions ihave so i have a habit of stopping when it gets rough instead of pushing thru. Having a major set back is definitely mentally draining.
Posted 3/15/2015 6:38 PM (GMT 0)
It really is, so be kind to yourself. It's good to have a healthy fear of these medications. They are some serious drugs! Don't feel bad either way, like I said follow your gut. Your instincts are right. There is a such thing as a cytokine storm that can be deadly. Not to freak you out, but it's not smart to push through everything. Maybe talk to your doctor about specific symptoms and where you should draw the line in the sand. Make a plan and stick to it under their wing the whole time.
Posted 3/15/2015 8:41 PM (GMT 0)
Lyme sufferer-

I've delt with tight muscles for years. ABX only helped my neck, but not completely - good since nothing else did.

I need to keep the hips from tightening since that can pull your sacrum and L5 out of whack causing intense pain.

Do you roll on a Lacross ball, or at least one of those post work out foam rollers? If not, look into these. They are not a cure but do help keep it under control if used daily. That said, I do get tired of using them, and dream of a pain free life.
Posted 3/16/2015 11:19 AM (GMT 0)
Ya, i work for a therapy dept., so i know all the tricks to release muscles. I have been laying on balls and the foam roller for a couple of years. It has made a huge difference in my recovery. Just sometimes the muscles dont want to release for anything.
Posted 3/16/2015 2:22 PM (GMT 0)
I am having the same kind of hip pain. It is really weird. Seems like all of my other symptoms are getting better and this one hip/back pain is getting worse. It also radiates down my legs and to my lower back.

you'll get better! keep on truckin!
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