Has anyone healed Bartonella on herbs??

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tonyaraven
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Date Joined May 2017
Total Posts : 398
   Posted 3/27/2018 4:21 PM (GMT -6)   
I am lost! My nightmare continues! I tried rifampin for 2 days, slept only an hour and a half last night, severe panic and head and neck pain is so intense along with all the weird nervy pain especially in my feet. I just can't do it, I'm not strong enough. Has anyone actually gone into remission on herbs? I'm wondering if this is going to be my life! I feel like things are so much worse then even before treatment over a year and a half ago!

Korissa
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Date Joined Oct 2006
Total Posts : 364
   Posted 3/27/2018 4:49 PM (GMT -6)   
I gave up on rifampin too years ago. Couldnt sleep even with zolpidem.

I'm using A-bart instead but have never totally knocked it out unfortunately.

goshawk
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Date Joined Sep 2016
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   Posted 3/27/2018 5:08 PM (GMT -6)   
Yes there have been people who went into remission on herbals.

I know it has been very difficult for you and I am so sorry you are suffering.

There have been others that have been on this forum that just cant tolerate and use antibiotics.

There is still hope to get better.

Many have had success when they try another path of treatment or combinations of treatments.

So many ups and downs for some of us but still look to the light and be hopeful that you will get to remission.

WalkingbyFaith
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Date Joined Aug 2017
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   Posted 3/27/2018 6:57 PM (GMT -6)   
tonyaraven,

I've heard others say they healed with herbs.

I'm so seriously sorry for all your pain and suffering. How do you feel about your doctor? I know you expressed to your doctor how serious and prolonged your herxes have been, and he still pushed you to start a high dose of Rifampin in the middle of all that. It's very clear that you have some issues going on that are causing you to have horrible herxes over and over again.

I think it would be good for you if your doctor (or a new doctor) would really step back and do some further testing and fresh evaluation to try to pinpoint exactly what those issues are and to quickly get you some effective symptom relief. Detoxing and lowering dosages alone are not going to fix this. Neither is bombing your body with more antibiotics, IMO. There are other issues going on here that need to be accurately identified and effectively addressed.

Before stopping Rifampin, though, find out the consequences. I have some vague recollection that I read somewhere that once you stop Rifampin, it is dangerous to pick it up again later. I could be wrong, but I thought I read that just recently. I'm sure some of the abx experts would know.

I wish I could do more to help. I'll keep you in my prayers.

tonyaraven
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Date Joined May 2017
Total Posts : 398
   Posted 3/27/2018 7:27 PM (GMT -6)   
Korissa-have you been going through this for 12 years!! I am so sorry, and also so scared that it may never come to an end for me either!! Did you ever go into remission?

Goshawk- Thank-you for your words of encouragement! I am so hopeful that one day I can look back on this time and wonder how I got through but know that I did!

WalkingbyFaith- what kind of things should I request my doctor to look into? He is definitely open any time I ask for certain tests. I stopped the Rifampin and to be honest i don't think I ever want to take it again! Thank you so much for your kind thoughts and prayers! There must be a way out of this very dark hole I'm in!!

Girlie
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Total Posts : 33909
   Posted 3/27/2018 7:40 PM (GMT -6)   
WalkingbyFaith said...


Before stopping Rifampin, though, find out the consequences. I have some vague recollection that I read somewhere that once you stop Rifampin, it is dangerous to pick it up again later. I could be wrong, but I thought I read that just recently. I'm sure some of the abx experts would know.


You might be referring to acute kidney failure that has happened (rare) in some people who have stopped Rifampin and then restarted it. (Most recovered after discontinuating the rifampin)

This is why it's very important that when we're on these abx, that we do monthly liver/kidney function tests.


/www.sciencedirect.com/science/article/pii/S2405579415300036
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

Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 364
   Posted 3/27/2018 9:20 PM (GMT -6)   
I've had remissions tonyaraven, but stress seems to bring it back.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/27/2018 9:28 PM (GMT -6)   
Korissa-So glad you've at least had remissions, I hope they have been somewhat lengthy! What a long journey!

Girlie- I've only done 2 days of Rifampin, so I can't imagine it could do much to my kidneys in that time. I only did the 300mg (should have stayed at 150 like you did) I shudder to think how much worse it would have been if I did the 600 like my llmd wanted me to do!!

bluelyme
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Date Joined Nov 2015
Total Posts : 4907
   Posted 3/28/2018 2:14 AM (GMT -6)   
for me after a few months on riffy then pulsing i went to venom and zhang hh2 /allicin combo(i stank and pricey$ yet effective) ...also rife...2 yrs later barts there but in remission i use just a few drops of essential medica houtynia formula with black spruce...i pulsed alinia too that caused a few panic attacks at first for me

Post Edited (bluelyme) : 3/28/2018 1:18:05 AM (GMT-6)


Girlie
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Date Joined May 2014
Total Posts : 33909
   Posted 3/28/2018 2:36 AM (GMT -6)   
tonyaraven said...
Korissa-So glad you've at least had remissions, I hope they have been somewhat lengthy! What a long journey!

Girlie- I've only done 2 days of Rifampin, so I can't imagine it could do much to my kidneys in that time. I only did the 300mg (should have stayed at 150 like you did) I shudder to think how much worse it would have been if I did the 600 like my llmd wanted me to do!!


I'm not concerned that your kidneys will fail if you restart it.

It's not a long term damage..it's a sudden acute failure...but again...it's rare.


With Dr J clinic, you're starting/stopping the riffy all the time.
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

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/28/2018 3:49 PM (GMT -6)   
I'm sorry to hear how difficult everything has been for you with the bartonella treatments tonyaraven. I've been having the same thoughts myself today - is this really going to be my life from now on :I.

I've only used herbs for bartonella and while I'm only around 5 months into treatment I do feel like there's been some progress in that time. It's hard to say on some days since it's very much back and forth and the symptoms aren't always clear cut. The more i read the more it feels like this is the tricky one of the lot requiring a lot of trial and error. I _am_ very optimistic that it can be done though even though I'm in the midst of it all too.

Wishing you some quieter more restful detoxing and clarity on how to move forward.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/28/2018 7:05 PM (GMT -6)   
Thank you sandyfeet! I keep hoping that every day things will get a tiny bit better but no such luck! My headaches are constant and they are taking so much out of me!! Nothing seems to give me any relief!

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 7:17 AM (GMT -6)   
Tonyaraven - I was thinking of you last night as I was reading about the Hansa centre (after reading Huddie's post - it was very inspiring!)

The first part of this article is horror stories so just breeze right on by to the second half.
http://hansacenter.com/doctor-induced-horror-herxes/

"In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!"

Although I think he's taking a jab at Buhner at the beginning I do really believe in Buhner's approach of first supporting the organs and systems, then seeking to alleviate symptoms and only then going after the bacteria. In his book Buhner outlines his bartonella protocol as reducing cytokines, protecting endothelial and blood cells, supporting the liver, spleen and lymph and immune system and goes on to say in bold 'Please understand that if you do these things, the organisms cannot continue to survive in the body'. I take a lot of strength and hope from these words. This isn't to say that Buhner's approach is the best, but just that I am trusting deeply that a gentle approach is possible and his work is currently where I'm finding that inspiration.

Make sure to stick with your instincts about what is right for you! You will find the treatment that resonates and you will come out the other end stronger and more knowledgable. I think that one of the things that I find most inspiring about this community and my lyme friends irl is that everyone is going at things from a completely different angle and everyone is making progress even if it doesn't always feel like it. (I know I often only pop by here on my bad days and that's not the best habit - I love that lots of people make an especial effort to post on their good days and we need more of that smile )

I am sorry to hear the headaches are constant. I get migraines (pre-lyme) but thankfully only occasionally. Wishing you a day of rest today.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/29/2018 9:31 AM (GMT -6)   
Thank you so much Sandyfeet! I will check out the link! I think I need to buy Buhners book since I've heard a lot of people like his approach. I just don't know what to do about my llmd, I had a lot of trust in him but things seem to be getting so much worse! I used to have periods where I would feel ok and I could regain my strength for those difficult periods but it seems the bad days are more frequent the the good! Before I started treatment I had a whole summer where there were lots more good then bad! I just don't know where to turn to any more! I had so much hope that by now (over a year and a half of treatment) things would be all better and this would be behind me and not that I would be so much worse!! Maybe giving up on my llmd and following the buhner protocol is what I should do, it's just hard when you don't have someone to turn to when things get bad!!

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2037
   Posted 3/29/2018 9:50 AM (GMT -6)   
tonyaraven said...
Thank you so much Sandyfeet! I will check out the link! I think I need to buy Buhners book since I've heard a lot of people like his approach. I just don't know what to do about my llmd, I had a lot of trust in him but things seem to be getting so much worse! I used to have periods where I would feel ok and I could regain my strength for those difficult periods but it seems the bad days are more frequent the the good! Before I started treatment I had a whole summer where there were lots more good then bad! I just don't know where to turn to any more! I had so much hope that by now (over a year and a half of treatment) things would be all better and this would be behind me and not that I would be so much worse!! Maybe giving up on my llmd and following the buhner protocol is what I should do, it's just hard when you don't have someone to turn to when things get bad!!


tonyaraven,

I understand your dilemma. A couple of suggestions if either of these appeal to you.

1. You could look for a new LLMD, but I would check with Girlie to see if she has any references and check the internet and ask around the forums about other people's experiences with the doctor(s) you're considering before jumping over. Also find out how skilled they are at treating the other issues like detox impairments, which you clearly suffer from, gut dysfunction, and things like that.

2. If you decide you have had all you can stand of antibiotics for now and want to transition to herbal treatment, you could talk to your LLMD about it and ask if he would support you in doing that, as you may need him for help with testing and whatnot. You don't have to cut all ties unless you want to. You will still need a supportive doctor of some kind to keep a check on your blood counts, liver enzymes, kidney function, and any serious issues or complications that you may encounter.

Post Edited (WalkingbyFaith) : 3/29/2018 8:53:16 AM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 3/29/2018 9:54 AM (GMT -6)   
sandyfeet said...
Tonyaraven - I was thinking of you last night as I was reading about the Hansa centre (after reading Huddie's post - it was very inspiring!)

The first part of this article is horror stories so just breeze right on by to the second half.
http://hansacenter.com/doctor-induced-horror-herxes/

"In truth, a severe Herxheimer reaction is a sign of poor elimination pathway drainage, poor organ support, and poor treatment by your doctor!"

Although I think he's taking a jab at Buhner at the beginning I do really believe in Buhner's approach of first supporting the organs and systems, then seeking to alleviate symptoms and only then going after the bacteria. In his book Buhner outlines his bartonella protocol as reducing cytokines, protecting endothelial and blood cells, supporting the liver, spleen and lymph and immune system and goes on to say in bold 'Please understand that if you do these things, the organisms cannot continue to survive in the body'. I take a lot of strength and hope from these words. This isn't to say that Buhner's approach is the best, but just that I am trusting deeply that a gentle approach is possible and his work is currently where I'm finding that inspiration.

Make sure to stick with your instincts about what is right for you! You will find the treatment that resonates and you will come out the other end stronger and more knowledgable. I think that one of the things that I find most inspiring about this community and my lyme friends irl is that everyone is going at things from a completely different angle and everyone is making progress even if it doesn't always feel like it. (I know I often only pop by here on my bad days and that's not the best habit - I love that lots of people make an especial effort to post on their good days and we need more of that smile )

I am sorry to hear the headaches are constant. I get migraines (pre-lyme) but thankfully only occasionally. Wishing you a day of rest today.


sandyfeet,

What an excellent and thoughtful post!

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 10:00 AM (GMT -6)   
I'm much earlier into the whole treatment process then you are but I think I know exactly what you mean. After doing some reading and getting over the initial fear and shock I had it in my head that I'd be better in 8-12 months - it's nice to look back on that period of optimism and smile at myself lol.

And I did have some really wonderful gains right at the beginning but now I'm here stuck at what feels like 60% for me. Every time I feel like I'm moving forward then I develop some new or worsening babesia and bartonella symptoms and I think, maybe I'm just waking the sleeping beast and much bigger things lie ahead. Sigh.

I wouldn't necessarily give up on your LLMD, especially if you felt good with him/her. I find it hard not having anyone to go to for tests to make sure I'm doing ok and all the wonderful things doctors can help with. Going it alone was more of a necessity than a choice for me. But you might be able to discuss taking things more slowly or exploring what you can do to support your body if that's what you're feeling you need. Or you can talk it through if you just need support to push through the difficult days. Whichever you're feeling in your heart.

I'm doing the Buhner stuff on my own but I do have a naturopath that I really like that I see occasionally when I feel like I need ideas or support on just staying healthy and in balance in general. It keeps me from going in circles too much in my own head which I think is one of the real difficulties of all the options we face treating lyme.

Buhner's approach may not be the best for everyone, but even if you're going the antibiotic route I do think he lays out in great detail exactly what the different bacteria do which makes it easier to understand what is going on. And I tend to take away a feeling that if my body were doing its thing properly I'd be able to cope which reminds me how important it is to do all the support work - eating well, exercising as I can, mental health et cetera.

You'll get through this. I'm confident we all will. smile
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 3/29/2018 10:16 AM (GMT -6)   
Aww thanks WalkingbyFaith. I was typing and missed your post - I definitely second the idea of hanging onto a sympathetic MD for tests - it really complicates my life living without blood work etc. On the upside I am _very very_ cautious working forward and as a result I have had little in the way of herxes (except for bouts of strong fatigue) so I guess that's a plus. There's always an upside I hope ;-)
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/29/2018 4:21 PM (GMT -6)   
walkingbyfaith-thanks for those options, I don't think there are any other llmds in my area, and I don't think I want to have a long commute, so for now I will stick with mine. He is a caring doctor and I believe he knows a lot but I think I might be a bit of a puzzle for him and many other doctors! The way things get set off is really crazy and very, very depressing!

sandyfeet- I so hope we will all get through this! I hope we can all look back on this time in the fairly near future and be amazed how we got through it!! It's so hard for me to stay positive right now, I'm really trying to crawl out of that negative space that this is never going to end!!
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