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Am I getting worse or better? How do you know?

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Posted 2/2/2012 8:42 PM (GMT 0)
Hi Everyone:

I'm trying to figure out what is going on here.  I hope I can tell you in a short description what is giong on.

Prior to January 3rd or so, I was taking Rifamphin and Zithromax for four months.  Then, on Jan 3rd, I started taking Flaygl and Biaxin.  My symptoms really flared and I was having really bad tingling/vibrating in my legs.  Also, having a lot of digestion issues (constipation, heartburn, bloating, etc).  I was on this for about 17 days.   I met with my LLMD and told him I was concerned that if the Flagyl might be causing me to have permanent neuropathies.  He said we could try Ketek and another drug.  I left his office and then thought about it and didn't take the new drugs because of the liver damage potentials with the Ketec.  I decided to go back on the Rifampin and the Zithromax until I see him again in March.

Well, about 8 days ago, I started the Paleo Diet (no grains, sugar, alcohol) and also starting going into my infrared sauna everyday for 30 minutes.  I've been wearing detox foot patches at night too.

I seem to be having a lot of vibrating in my feet and today, I've had pretty bad pain in my toes and lower legs (like in my shins if that makes any sense). 

I am a little worried that maybe I made things worse after going off the Flagyl and back onto the drugs that I was on before - like maybe the critters are resistant to the Rifampin and Zithromas from having started, stopped and then restarted 3 weeks later....         OR             I'm herxing and this is all a good sign?  I wish I knew!!!!  This is all so very confusing and I don't know what to do.

Also, now I'm starting to think that I have mercury issues.  Three months before my gallbladder went bad, I'd had 14 mercury fillings replaced.  I had no clue there were "biological dentists" and I breathed in all those vapors while this was happening.  It was a year later that my leg symptoms of vibrating/tingling etc started (a few weeks after my gallbladder surgery). 

I'm just so confused.   If anyone has any thoughts, I would be appreciative of your sharing them with me.

Thank you very much for listening.

Carrie

Posted 2/3/2012 3:48 AM (GMT 0)
I've been in the same boat - wondering if feeling worse is a good or a bad sign, wondering if I made the bacteria resistant to certain antibiotics - just total confusion and feeling completely overwhelmed. All I can tell you is that eventually things started to make sense. I may be wrong, but I'd think that if the antibotics weren't working anymore, you'd feel like you've hit a plateau, and wouldn't keep herxing. During the whole first 4-5 months of my treatment I felt like I was in a constant herx - sometimes it seemed to be getting worse, but it never seemed to be getting better. Maybe you're going through something similar? My best advice to you is to take thorough notes on all of this - what you take and when, how you feel, etc. It'll all start to come together.

Have you done heavy metal testing for the mercury? If that's an issue, I believe there are a few options. There are chelation protocols out there to get rid of the heavy metals, and I think some binding agents might help with that as well. Make sure you're keeping your doctor up to date with all of your concerns.

Sadly, treating Lyme disease - or any disease, for that matter - isn't an exact science as we'd like to think. There's a lot of trial and error, a lot of uncertainty, and a lot of doing the best you can and figuring it out as you go along. I'm the first person to drive myself crazy being so confused and wanting to know exactly what's going on in my body - what's helped me the most is to just force myself to shrug and say, "Eh - who knows". Think of all the weird and confusing stuff your body's made it through - you may not know exactly what's going on, but I think by now you can trust your body to deal with it.
Posted 2/4/2012 1:17 AM (GMT 0)
To add to Borderlymes' great answer, something else you must consider is all the changes that you have made lately! Each change has the potential to cause a reaction. So you changed meds on Jan 3rd - it sounds like you experienced a herx from that. Then 8 days ago you started a new diet - another reason to experience some symptoms changing - not to mention that you started staying in a sauna for 30 minutes at a time and wearing foot detox pads!!! smhair It's no wonder your body is saying 'wait!'- LOL!!

I would say ease up on the detox pads and cut down on your time in the sauna - go to 15 minutes a day in the sauna. If you seem to handle that, then add another 15 minutes in the sauna to the other end of your day. It'll be easier on your body to do 2 - 15 minute sessions than 1- 30 minute session.

You can easily see that you had a rise in symptoms after your gall bladder surgery - so did I! That was because of the stress of going through surgery. We have to remember that our bodies need time to adjust to changes, and is generally a good idea to always ease into new meds.

Please let us know Carrie how things go!!
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