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I think going off ABX was a mistake. Having many new issues

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Posted 5/2/2012 4:50 PM (GMT 0)
I officially stopped taking pharm ABX in late January and when onto herbal Byron White stuff which I stopped last week because of Acid Reflux.

Well... I've had a pretty bad back issue going on for about a month and then the last couple of days, noticing my knee hurts.  Anyway, yesterday, my entire body was in so much pain that I felt like a 90 year old woman and actually considered taking a pain pill (which I never do).  Then, and this really scares me, I woke up at 2am this morning and the tips of my fingers on my right hand were numb.  The numbness in the tips is gone, but I still have a tingling feeling in my fingers.

I'm getting really scared that I made a huge mistake going off the ABX because I was doing so well until the acid reflux took over.  I'm going to call my doctor today and ask to be put on IV ABX.

One thing that concerns me though is that pain has never really been an issue for me.  I have mostly had the tingling/vibrating/random numbness in my feet/face and left leg...

Ugh....I'm having a really bad week!

Posted 5/2/2012 6:13 PM (GMT 0)
Don't despair, Carrie! It takes time to find which course of action is best for each of our personal situations. It will get better - you will find your way. I have been on the abx and added the Byron White and teasel. I toggle the abx (except for Ceftin, the spiro killer that stays on full time), adding Biaxin ffor 2 weeks every 2 weeks. Now that my Byron White is done (I did A-L Complex and A-BAB), I am adding Samento/Banderol for a stint. But, I am even 2nd guessing that and going with raw Cats Claw (like samento but with the TOAs intact), Japanese Knotweed resveratrol and Eleuthero (Siberian ginseng) - these being the core Buhner protocol - once I finish the Samento/Banderol in a month or so. I am really feeling much better of late but I want to keep the pressure on the critters until they all get whacked! For detoxing, sweating is best for me so I run (and use baths and the FIR sauna on occasion) and eat as raw and as green as possible - it's a great time of year for that with all the local veggies and fruits coming in! Also, since I had high levels of mercury, I take NAC (to boost glutathione and ALA to chelate the Hg). Plus, I meditate, do acupuncture and some yoga for emotional balancing.

I just started the samento/banderol at very low dosage 3 days ago and I can feel an increase in symptoms - this tells me that my hunch was right about still having some Lyme load to address. My experience is that it takes time for things to work, it takes time to figure out what best works for YOU and you have to even change what is working form time-to-time so that the critters cannot adjust to whatever you're throwing at them at any given time. For me, the base state of keeping an abx going has worked for the 10 1/2 months I've treated so far while I add/subtract other abx and herbals and supplements.

You will have BAD weeks but, always remember, you'll have GOOD weeks too. As time passes, the good times will get longer and better and the bad times will shorten and lessen in intensity. You've got this!
Posted 5/2/2012 10:46 PM (GMT 0)
Hey Carrie!

I stopped antibiotics before I was 100% and I really regret it to. I was off for about 6 months (July though December) and I went REALLY fat downhill, and things have been very slow every since I got back on antibiotics. Not trying to scare you! You haven't been off for as long! And I might have untreated Babesia. I am REALLY hoping I do, because it would explain a lot.

But- you couldn't have known it would be a mistake! Lyme is really hard to figure out. You did what you thought was right. Now you are doing the smart thing and changing back since what you did didn't work.

For me, when I stopped antibiotics I had much worse problems with pain than I've had before (I would get HORRIBLE pain my legs), but that actually has gotten MUCH better since I started antibiotics again. I also have MUCH worse fatigue this time around. My brain fog and cognitive problems came back and were really bad by the time I re-started antibiotics, but went back to where they had been after about 2 months. So, some things will improve very quickly once you get on antibiotics. Other things will be slower. And maybe some of the new things are important to take note of, because they show things you may have missed the first time around (in my case, my ND now thinks I have Babesia that wasn't treated causing my fatigue)

If I could get IV antibiotics, I would. So i think that sounds like a good plan (personal opinion!). In my case, I have to try to make do as best I can with what I can get.
Posted 5/2/2012 10:53 PM (GMT 0)
Thanks Zeusy:

I emailed my doctor's assistant today and I got an automated email back that he is on vacation until May 15th so I emailed back again asking if I can see another doctor. I'm hoping that the IV stuff won't cause stomach issues/acid reflux... AND, hopefully they will work quickly.

Like you, I cannot believe the amount of pain I am having. I'm feeling a little better today than I was yesterday except for the numb fingers but wow.

Well, hopefully we'll get better soon. It's just....when do you know when you are done, you know what I mean?
Posted 5/6/2012 9:03 PM (GMT 0)
Yeah, I know. But this time around I have an LLND who I trust completely and who agrees I went off antibiotics too early and has promised me that she will keep treating me until she is sure all my symptoms are gone. It still won't be for sure that I am done, but I won't be stopping early because of wondering "what if this is normal/all in my head" this time.
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