Transitioning from antibiotics to herbals successfully with neuro Lyme, Bart and babs?

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Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 92
   Posted 5/12/2018 7:45 PM (GMT -6)   
Hello everyone,

I am wondering if any of you have made the transition from antibiotics to herbals while having neuro Lyme, Bart, or babs? If so which protocol worked for you? I realize that we are all different and one protocol will not work the same for another person. For reference, my main symptoms are brain fog, tingling face, burning scalp, face, and random parts of my body as well as nasty headaches. The latter (burning and headaches) only happen when I decrease my antibiotics. Thank you for any feedback that you may have.

sebreg
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Date Joined Jun 2015
Total Posts : 1014
   Posted 5/13/2018 8:26 AM (GMT -6)   
I'm currently off abx and I have had a lot of those symptoms, highly neuro (many are better with the various treatments but I'm trying to keep finding ways to improve). I've found Buhner, Cowden, and Zhang protocols (allicin, houttuynia) to be good. I will say that my symptoms didn't really operate like yours, when I stopped abx they didn't suddenly ramp up. So I'd be careful, maybe trying to add in herbals along with your abx and then seeing if you can drop some of the abx (if that is your goal)? I'd def do research before adding anything in though!

I often mix and match. Currently I'm trying out essential oil combos (via Tick Slayer brand) that are specifically put together for these infections. Def makes me herx like crazy, I think they are pretty strong! but I suspect this will mean they will be effective for me as is usually the pattern of these things for me.

The nice thing with the Buhner protocol is I think it is the most affordable. I can't rely on one thing though because I usually end up plateauing and that's when I need to rotate to something else or add something in.

I also take some oil of oregano capsules, those have seemed to be solid for me as well.

I hope you keep finding effective therapies that help you clear your symptoms!

Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 92
   Posted 5/13/2018 9:04 AM (GMT -6)   
Sebreg,

Thank you very much for responding. I have been taking several beyond balance herbals for the last 6 months along with 2 antibiotics and 2 meds for parasites. In addition, I am also on a large number of supportive supplements. I am happy to know that you were able to make the transition from antibiotics to herbals, despite having many neurological symptoms. This gives me hope that it can be done.

I was at a conference a few weeks ago and spoke with a well known neurologist and explained to her what happens each time I try to wean off of the antibiotics. She indicated I have an increase in symptoms because I have an active infection. I have been treating lyme, bart and babs for nearly 5 years now and I am amazed that the bacteria/protozoa are still thriving. I was listening to an interview with Dr. H this week and he was talking about persisters. I am thinking that this may be part of the reason why I am not able to get beyond 60%. Due to toxicity, I am a bit leery of starting the Dapsone protocol but would be interested in trying to target persisters using an herbal approach if possible.

I have been increasing my beyond balance herbals and I am now at 30 drops BID. I am not sure if you or others have a similar reaction when taking herbals but for me, they just make me out of it and achy. Also, I noticed that when I reach a certain number of drops my ears become plugged. I am wondering if this may be an allergic reaction?

I am intersted in trying out either Buhner and or the Zhang protocol. When I first became sick, I was incorporating some of Cowdens and Byron White along with antibiotics. Unfortunately, the Cowden protocol did not really do much for me. The Bryon White herbals seemed quite strong and I definitely herxed with A-Bart and A Bab. The only reason why I I stopped these herbals was due to my LLMD leaving state. My next LLMD did not believe in herbals unfortunately.

I do not know much about the essential oils. Are you putting the oils on your skins or are you ingesting them? I have also heard good things about oil of oregano but have yet to give it a try.

How long have you been treating and are you taking anything for persister cells? Thanks!

sebreg
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Date Joined Jun 2015
Total Posts : 1014
   Posted 5/13/2018 2:15 PM (GMT -6)   
Oh yes, I do think there are many ways to get better, even with the more difficult cases, and highly neurologically based cases. I do have to say I did do the dapsone protocol and also PZA protocol. They were both helpful and more effective than any other abx combos I'd been on before, but I think I have a very entrenched bartonella case which requires throwing the kitchen sink at it and then some. So obviously didn't get me to remission but those protocols did do some heavy lifting for me in clearing some pathogen load.

Lyme I'm guessing is a secondary driver of my health issues behind bartonella. I did try levaquin (hestitantly) but even a small dose gave me an intolerably insane herx rection that I just couldn't manage.

Oh yes, the byron white and beyond balance are good ones! Ahhh, the ears getting plugged. I must admit this used to be a symptom for me throughout my life, I'm quite certain it is related to the infections. As I've progressed with treatments that symptom disappeared. Same for my mom (also has lyme, she'd also get the plugged ears, we had always assumed allergies as well). So possible it is from the herx reaction... can be hard to say for certain.

Yeah, Cowden was mildly effective for me initially but after a while it wasn't doing anything.

Essential oils, I'd always been quite skeptical. But so far with how I'm responding I'm pleasantly surprised. I had the privilege of talking with some wonderful researchers and they both say the potential of the essential oils for treating these infections is very strong. Dr Zhang has done some promising in vitro studies and is looking to do animal model studies with the oils. The question would be tissue penetration I suppose. But anecdotally (for what it's worth) it seems a decent amount of patients have some success with these therapeutics and from what I hear they have strong ability to penetrate biofilms. I'm guessing they may be able to target persisters but that is just pure guess on my part.

I'm ingesting the oils (mixed with water). I have to start out very slow because I think they are very strong. So best to start out slowly and carefully! The oil of oregano is from Designs for Health, that's the one my doctor suggested to me (a doctor whom I have high confidence in). Couple others in that range of things that I found helpful: blackseed oil (I took capsules), and olive leaf capsules.

I'd say I've been treating earnestly for about 3 years now. I've had the infections a very long time and was bedridden for many years, my guess is the more severe the case and the longer the infections have been there the steeper the climb to recovery. Not impossible, just challenging! I've done about 2.5 years of heavy abx, so while very helpful I'm glad to rotate onto other strategies to keep pushing me forward.

I always like having a framework for treatment strategy and things to fall back on. You could trial out some of these herbal therapies, see how it goes, and then if progress isn't happening can always then try the dapsone-style protocols?

Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 92
   Posted 5/13/2018 8:13 PM (GMT -6)   
Sebreg,

How long did you do the dapsone protocol for? A former llmd of mine has mentioned it to me several times but I am a bit hesitant as I have been on many antibiotics during the last 5 years and I would love to give my organs a break if possible. But if push comes to shove, I will have to give it a shot.

Not long after I first became sick, I remember my llmd put me on Levaquin and I felt terrible for a week or so. I actually contacted my llmd at the time and convinced her to put me on something else. In retrospect, I probably should have just stuck it out. Basically, I was missing work and felt that I needed to be able to function in order to go to work so I got off the Levaquin and the herxing subsided.

As far as my ears becoming plugged upon taking the herbals, I never thought it could be possibly a herx reaction. The same thing happens when I eat tortilla chips...can't seem to get that monkey off my backsmile.

I am generally skeptical about most things that cannot be proven but since becoming sick I have slowly (and I mean slowly) begun to consider alternative treatments and given them a try such as peptide therapy, LD naltrexone, medical marijuana and now I have started doing mhbot. I figure if the risk is minimal then why not give it a try. As far as the essential oils, I may have to run this by my llmd and start incorporating into my protocol. Thank you for the heads up on the kind you use, it is appreciated.

I like your idea of giving the herbals therapies a chance. I have been communicating with Traveler who has been most helpful. At the moment I am contemplating incorporating Kudzu root in as it apparently helped with her neuropathy. But once again, need to run this by my LLMD. It sounds like we both have infections that are entrenched. Would like to continue to compare notes if that's alright by you. Thanks again for your suggestions and feedback. I am always looking to see how others that are experiencing similar symptoms are going about beating these infections back.

sebreg
Veteran Member


Date Joined Jun 2015
Total Posts : 1014
   Posted 5/13/2018 10:09 PM (GMT -6)   
I did the dapsone protocol for 1 year. Followed that with 6 month PZA protocol (I think the PZA was hitting the bart). The thing is Dr H now does the dapsone dosing at 200mg (but for shorter duration), I topped out at 100mg. I've heard he was having more success at the 200mg dosing. I've been on LDN for a while as well, I think it has helped but it's hard to say for sure.

Yeah, I think levaquin was a great drug for the bart infection I'm dealing with, I'd never herxed to that level, it's unfortunate I couldn't manage it. Then again I was also quite worried of all the potential side effects, and with herxing at that level I wouldn't have been able to distinguish between herx/serious side effect. And like you mention, depending on your situation sometimes you have to go more slowly with treatment, not only because the herxing is so strong, but because one can't afford to miss work or other life responsibilities. All about pacing, it's a marathon!

Haha, 100% same, I evolved slowly in my views on alternative therapies. The conventional allopathic therapies proved helpful but herbal combos have been quite efficacious as well. I haven't done hbot but it seems to really help some patients. In my view it's good to look at the variety of tools in the toolbox and use whatever we can to help us manage pain, sleep, boost immune system and body, and finding ways to treat the infections. Tricky cases can require more experimentation.

Traveler is the best! and such a great resource. One well-respected llmd suggested I try higher doses of magnesium malate and magnesium threonate (the threonate supposed to be good for neuro symptoms). I just throw that out there, I figure you might already been on mag supplements but never hurts to share ideas smile It's my pleasure to share anything I can, I've always tried to learn from other patients and am grateful that so many have been so open in sharing treatments, experiences, support. It's been a godsend, without other patients I'd still likely be undiagnosed and stuck in hell.

Feel free to email me anytime!

Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 92
   Posted 5/14/2018 6:22 PM (GMT -6)   
Sent you a pm Sebreg.
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