Intro and thank-you everyone...

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sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 284
   Posted 3/9/2018 11:14 AM (GMT -6)   
I have been following the messages on the group since I realized I was dealing with lyme eight months ago and I can not express how grateful I am to all of the members on the group for all of the wonderful information and personal experiences shared here.

For a long time I just dipped into messages here and there based on searches, but when it became clear to me that this journey of healing is going to be much much longer than I initially hoped I started slowly reading through the archives and it's been a very positive experience for me. The sense of community here reminds me of my early days on the internet, all sorts of people with diverse backgrounds, experiences, and approaches coming together to share information and support each other. This group is my happy place right now and that is one of the small blessings that lyme has brought me. So all that is to say thank-you and hello.

Life is very busy for me as I have young children and I'm doing my best to continue to lead as normal a life as possible because, as you all know, no one really wants to hear the lengths you go to to do all the basic stuff so I do not know if I will post often but I do want to thank everyone that takes the time to share on this group it really is a lifeline!

As for my own story, I was bitten four and a half years ago (I never saw the tick but I was hiking in an area well known as a hot spot) and developed a bulls eye rash. By the time I made it to the doctor's office the rash was fading, it was diagnosed as a horsefly bite and I tested negative on the two teir test at four weeks and again at four years.

Undeniable symptoms took about two years to develop and by the four year mark a friend had introduced me to Buhner's work and I started treating with herbs. All medical tests have been negative so medically speaking I’m just a healthy complainer ;-) which on the upside means that I have a good starting point for following my own instincts on an herbal protocol.

It took several months to reach the full protocols (minus a few things) for the three main infections (borrelia, babesia, and bartonella) which I've been treating since November 2017. Immediately I saw improvement in some of the lyme symptoms but in the last couple of months symptoms have been somewhat cyclical, alternating between dominance of one of the three infections and it feels very much as if it is one step forward and two steps back right now. So here I am for the long journey. smile

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 3/9/2018 11:17 AM (GMT -6)   
Welcome! Glad you decide to post. This place is a positive place for me too. Curious - did you only do the ELISA tests or did you have a Western BLot? If so, did you have any bands light up at all or was it totally negative?

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 284
   Posted 3/9/2018 11:58 AM (GMT -6)   
Thanks Missouri!

The tests with the doctor were the standard two tier and my doctor didn't know what part of the test was negative, they just came back listed negative <sigh>. I was originally worried that it might be lyme and probably took the test too early at 4 weeks and then at 4 years my immune system is just too low to show much. C-reactive protein, thyroid, and all the other standard tests were normal too.

I did do a test with Igenix and the IGg was ++ on band 41 and IND on 31. I didn't bother with tests for babesia or bartonella. I didn't recognize babesia symptoms until I started treating with Cryptolepsis and then they became much more obvious to me. Bartonella was pretty obvious from the start.

I wish I had done a CD57 test before I started treating but everything is pricy and I have to travel a good 8 hours from home to do any testing. I'm still humming and hawing about doing that and a CD4 test as I have a strong feeling I won't really recognize when I'm truly in remission, everything snuck up on me so slowly the first time round.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32635
   Posted 3/9/2018 12:19 PM (GMT -6)   
Hi sandyfeet - welcome!

Glad you finally decided to post....we're happy to have you join our group!

The screening test you had was either the Elisa or the IFA. Not much information on that one - positive or negative. Only if it's positive do they run a WB.
That's what I originally had - and it was negative too...so they didn't go on with the WB.

Then I tested with Igenex.

I'm glad that the herbals are working for you....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/9/2018 4:55 PM (GMT -6)   
Sandyfeet,

Welcome and thank you for such a lovely introduction! I also joined the forum about 8 months after searching the internet for information and repeatedly finding amazing information located here.

Thank you so much for sharing your experience thus far with the Buhner protocols. Sounds like it's working well for you. I'm still struggling with it after 9 months. I've had some improvements and brief periods of feeling better for a few days up to 2 weeks. I've had multiple relapses. For me it feels like one step forward and three back. However, I have had enough improvement and also symptom worsening (herxing) to know without a doubt that the herbs are potent medicine.

I'm hoping the herbs will not only conquer the infections but also restore proper immune and body functioning for me. I feel like that kind of restoration is imperative for me to recover. It just doesn't seem to be happening like I imagined it would. Maybe it will just take more time. Maybe I need to do more of other things like diet and stress management to right-side my body.

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 284
   Posted 3/9/2018 7:18 PM (GMT -6)   
Thanks Girlie smile

My doctor wasn't sure what the test was when I asked for more details and dismissed the Igenex results completely.

Thanks WalkingByFaith. smile Two weeks of feeling well at a time sounds wonderful!

I definitely had a vision of a slow and steady progression but I guess that's not the way of things - lol. There were some great gains in the beginning but lately it's felt very cyclical with symptoms swapping around and returning from time to time. I'm trying to look at it as a positive sign of one infection getting knocked back to allow another to shine through a bit more, hopefully less each time but it's so hard to quantify isn't it?!

What finally motivated me to do the testing was that I had started developing some very scary buzzing sensations in my face. Those went away within the first month of treatment which was great so I knew I was on the right track.

Insomnia was my next most troublesome symptom and I was really happy when that improved substantially after the first two months of treating bartonella and babesia seriously. It still comes back for a few weeks at a time. Long hours of wakefulness seems to be bartonella for me, while spending most of the night in a light dream state is babesia I think. It flips between the two and then for a while I'll have what seems like normal run-of-the-mill not-so-good sleep which is pure heaven for me.

The rest of my symptoms are definitely trickier. Joint issues are my biggest problem at the moment which is frustrating. I kind of prefer when it's that burning muscle pain lol as at least I can get around and do things.
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