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Posted 4/15/2014 5:41 PM (GMT 0)
Hello, friends. I'm new to the forum, though was diagnosed with Lyme thanks to an open-minded LLND who skipped ELISA and went to IgenX Western Blot back in September of '13. After 20 years of 'what the heck is going on with me?', I had an answer.

During that long period of time in which no one (same story I've now read and heard hundreds of times since absolutely gobbling information available on Lyme since my diagnosis--a long parade of doctors, blood tests, horrendous surgical procedures, and some damage that can never be undone) could seem to help me figure out what was going on, I became obsessed with learning about natural health options and eating well/using natural remedies and supplementation. And I'm proud to say that I had several long periods of remission when I didn't even know I had Lyme...and accomplished much!

And so, that was something I wanted to take with me as I started down the path, with a wonderful LLND, to cure Lyme (and Bart co-infection, maybe others). So...from September to February, we made tough but steady progress utilizing the A-Bart formula plus Pekana detoxes and Curaphen for inflammation. Once I got to 10 drop 2x/day of A-Bart, seemingly out of nowhere, everything went haywire. Overnight, I watched both thumbs swell and turn red. Then my lower back, then shoulder blades, then back ribs, then left foot (two specific joints)... at this point, my LLND had me take a break from the natural Abx and upped the anti-inflammatories (adding Cyflacalm II) and detox (re-upped on the Pekana 3)... And then a knee blew up... no walking = to the rheumatologist to have it drained and (yikes) cortisone shot in. Knee gets better for a couple weeks, then blows up again...not doing another shot...don't want to go on prednisone which is (from what I've read) SO bad while treating a chronic infection... But all the flash points lit up like a Christmas tree last night to the point that I felt my system going into shock from all the pain. I've NEVER experienced that before. It was very frightening, and very humbling...and it proved to me that I don't have it all under control.

So...most of all, I think I just needed to reach out and share this with others who understand. No matter how I explain it to friends, family, or my darling b/f, they can't fully understand. Last night was scary. And it felt possible I'd never get better. This morning is better.

I'd love to hear that I'm not out of the norm...and I'd love to hear how any of you have made it through the worst of your herx's (and...is it right to think this is still just a herx, and not a full-on flare? It started Feb 15, and here it is, April 15, the morning after my worst night ever...)

Thank you, and best wishes to everyone in your path to wellness!!!
Posted 4/15/2014 8:39 PM (GMT 0)
Hi Lymesingerin,

Welcome to the forum!!!

You seem to have found a good doctor, listening to you and your symptoms!

Your inflammation titers must be very high, I know what you are going through. I have had about 15 years of arthritis like symptoms, and they went all crazy when I started treatment. It hurts so bad...
Have you been tested for the mthfr gene mutations that can prevent people from detoxing? Do you do a lot of detoxing?

I was on abx for 15 months, and had to take several breaks because of inflammation. I turned to a modified Cowden Protocol these last 4,5 months, and inflammation is still as high. All because of die-off...
I just looked up curaphen, it is curcumin and boswellia. Both very efficient herbs to fight inflammation, a lot of our members use it. You could add ginger too (eg tea, or capsules - it suppresses prostaglandin synthesis).
I used Zyflamend and lots of Omega3. The latter seems to make a difference for me.

No matter how well you try to explain, most of the people don't get the full extend of what this infection/treatment is doing to us. Support from co-lymies is very important, this forum has been a life saver for me :-)

I can just advice you to listen to your body, do a lot of detoxing (I guess you know your detoxing methods? if not there is a lot of information on top of the Lyme page 'New to Lyme? ... Start here!'), and go day by day, don't try to push your body too much either. I'm glad for you that you have a good dr at your side.

Don't hesitate to come on the forum if you have any questions, or if you need support or venting. You'll always find a kind soul here to answer your questions :-)
Posted 4/15/2014 9:53 PM (GMT 0)
Welcome lymesingerinCO. I'm sorry you've been dealing with this illness, but it seems you found a good doctor to work with.

Do you drink a lot of water? That's important. Some people have green drinks to help with detoxing. You can make a fresh one with a good blender, leafy greens like kale collards, parsley, etc, and a little fruit to make it taste better. Or you can get a powdered mix to make it easier. Green Vibrance is one many here use, but I haven't tried it.

Good luck!
Posted 4/15/2014 10:05 PM (GMT 0)
Thanks, MarieLS and Garden Peace for your responses!

Yeah, I drink so much (filtered) water I think I'm floating ;). My green drink of choice has been Healthforce Vitamineral Green (I also get the Healthforce Maca...I find it's helped a LOT with the hormonal roller coaster that has accompanied treatment for me.) I mix them with water and a banana and a protein mix called Absorb Plus. It's great.

I've not been tested for the mthfr gene mutation, but more and more it's been something I'm thinking about talking to my ND about. As it is, she has me on a liver, kidney, and lymphatic system drainage kit. I do detox baths but I think I run them WAY too hot, and that explains feeling awful...probably causing a fever die-off. I'm going to follow the instructions on the introductory 'New to Lyme...' page for the baths, including the thermometer, and see if that makes a difference.

Thank you!
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