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JoyfulAmI
New Member


Date Joined Mar 2018
Total Posts : 5
   Posted 3/6/2018 3:53 PM (GMT -6)   
This is my first post here. I was so grateful to find this forum recently as I have been unable to find a local support group (I'm in Washington State) and it is very refreshing to "hear" from others that I can identify with.
I believe my first symptoms presented in 2005, though I was not diagnosed until last year (2017). After nearly a year of treatment (starting with digestive issues, beginning a basic Lyme protocol, and then beginning an herbal Bartonella treatment), I have not seen a significant reduction in symptoms. Some (primarily digestive) are improved, but new ones have cropped up to take their place.

My question is this: Has anyone experience significant reduction in symptoms with only herbal treatment?

I've had one bad reaction after another with the use of antibiotics, leading to complete digestive failure. I'm extremely hesitant to pursue this as a course of treatment, especially long-term.
I've done a lot of reading on herbal treatments, the science behind them seems sound, but I haven't personally experienced much success with them. A few of the herbs my ND has suggested have helped, but many have had no effect at all.
Can anyone speak to this?
Thank you

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2101
   Posted 3/6/2018 5:03 PM (GMT -6)   
Hi, and welcome to our community,

Glad you have joined us and we have many members that are using herbal protocols.

I have been doing Buhners protocols and I have had improvement.

Treatment can be very different for each of us. Getting well can take time and sometimes during treatment symptoms can come and go. new symptoms can show up especially as we begin to reduce one infection.

For example, for me Bartonella has come out stronger as I knock back the Babeisa.

If you would be willing to share what herbals/treatment you are taking and what your predominant symptoms are maybe members will be able to offer some input that could help.

We do encourage all new members to read our "New to Lyme " Start here thread at the top of the page.

It has loads of good information on detoxing, Lyme, testing, symptoms and more.


Take care, Jo

JoyfulAmI
New Member


Date Joined Mar 2018
Total Posts : 5
   Posted 3/6/2018 5:38 PM (GMT -6)   
Thanks, goshawk. Reading through the "New to Lyme" was one of the first things I did ;)

Continuing to heal my digestive system I'm still on Monolaurin, GI Revive, probiotics and digestive enzymes as well as following a very strict diet eliminating foods I tested as sensitive to (IGG/IGA).

For Lyme, my doctor has had me on the RNA Results protocol since May 2017. I definitely experienced herxing as I worked up to full dosage, but haven't seen much by way of "results" - although I can asceed that this could be a result of co-infections as well.

I tested positive for Bartonella early on, and with education about it we (my doctor and I) decided to focus on treating it before going further with Lyme treatment. I started on 1 drop 2x daily (BID?) of Byron White's A-Bart, with a goal of increasing by 1 drop per week to an effective dose of 20 drops 2x per day. That hasn't worked so well, and after more than seven months, I'm only up to 14 drops. I've had intense, extended herxing that has prevented me from progressing as quickly as I'd like. Guess it's an opportunity to learn a little patience.

Treating Bartonella brought out Babesia, and that seems to be bothering me more than any of the others at the moment.

My doctor is very supportive and ok with me following any course of treatment I'd like - which is helpful if a bit overwhelming. My current thought is to embark upon an herbal protocol, focusing on herbs that hit both Lyme and Babesia, while phasing out the Results RNA protocol. Just wanted to reach out here and see if there's any hope in that approach.

Primary symptoms at the moment include muscle fatigue/pain, brain fog, night sweats, anxiety and low energy.

Thanks again for your time smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 3/6/2018 6:10 PM (GMT -6)   
Ho JoyfulAmI - just wanted to also welcome you to our forum.

I see Jo has given you a lot of good information.

Keep reading, posting, and ask any questions you have. Lots of knowledge and support here.
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 : 1662
   Posted 3/6/2018 7:46 PM (GMT -6)   
Welcome, Joyful!

Sounds like your case is similar to mine. I had some bad experiences with antibiotics too and started treating with Buhner's protocols. I haven't had a lot of improvement either after 9 months. Every time I feel like I'm improving, I get knocked back again with extended herxing and can only tolerate a few drops each of the "killer" herbs.

Before I started, I had come to the conclusion that Bartonella was the most troublesome one for me, so I decided to do Buhner's bartonella protocol with additional herbs for Lyme and babesia and chlamydia pneumonia. So I'm essentially doing something to hit everything.

I got sick in December and needed an antibiotic for 7 days and I'm still trying to recover from what seems like a herx from taking that antibiotic. It's so frustrating.

proactfit
New Member


Date Joined Nov 2017
Total Posts : 11
   Posted 3/7/2018 9:56 AM (GMT -6)   
Personally, I have seen great results with herbs. I was diagnosed last July after many years of symptoms and two and a half VERY bad years. I initially did only herbs and acupuncture and after 3 months I felt amazing. Probably only at about 70% (if that) but compared to where I had been it seemed like 150%! I switched to babesia protocol beginning of December as those had been my biggest symptoms for about 5 years and treating that has been more difficult in terms of finding a protocol I am comfortable with. My Naturopath didn't have a protocol for that so I was self treating which was too overwhelming for me and I had no confidence in what I was doing. In mid January I decided to do Mepron for 30 days as I didn't feel comfortable with the alcohol in the tinctures and didn't really see improvement except that my hair had stopped falling out (yay!!). My Lyme herbs were in pill form and I felt much better taking those than the tinctures and I was able to take big dosages. I regret going on the Mepron and Zithromax but that being said, I may do another cycle as the infection is still there and my naturopath doesn't have pills for babesia except artemisia. Right now I am so much better than I was this time last year, especially cognitively, but symptoms are returning since coming off the Lyme herbal protocol in December. Not surprising since I came off the protocol after 4 months!! My original plan was to stay on for 3 years - how quick we forget when we are feeling better! If I had to do it again, I would have stayed on the Lyme herbs and just add artemisia for a while and see if I saw improvements. I don't know if stopping one protocol and starting another was helpful for me. I may have been better off riding the wave and seeing if my body kept getting stronger to fight the infections. Anyway, I still have good days and bad days, it's up and down but the good are better and the bad are not as bad. I'm still so GRATEFUL that I was finally diagnosed!

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 299
   Posted 3/7/2018 10:37 AM (GMT -6)   
I've never tried antibiotics. I experienced decent improvement self treating with Buhners protocol. I have experienced even more improvement since I have started treatment with a homeopath

JoyfulAmI
New Member


Date Joined Mar 2018
Total Posts : 5
   Posted 3/7/2018 2:43 PM (GMT -6)   
Thank you, everyone. Your input is encouraging, and your reminders are so important!

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 192
   Posted 3/7/2018 8:54 PM (GMT -6)   
Hi there,

My son did use antibiotics, which I think really helped a lot. But he also used Beyond Balance Bab 2, Allinia and Artesunate which may have targeted Babesia. He has been using Buhners since starting slowly last December. Gou teng and Japanese knotweed may have helped with brain fog smile
15 yr old son sick no school Oct/15 Dx July/16
Migraines extreme brain fog anxiety/ocd insomnia extreme joint pain neuropathy stomach pain
Aug 3/16 Doxy Zithro BB Bab 2
Oct 5 Zithro and rifampin, Bab 2 anxiety/panic attacks -quit rif
Dec Zithro, Artesunate and finishing Bab 2 Mid Dec add japanese knotweed,gou teng
Feb 2017 80% normal back to school, added houttuynia

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/7/2018 9:04 PM (GMT -6)   
I did the Buhner protocol for a couple months, it helped, but it went so slow, it can become discouraging. Now I'm back on antibiotics. Honestly, I feel like the cure to this disease is to throw as many things possible at it and see what sticks for you.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 544
   Posted 3/9/2018 11:42 AM (GMT -6)   
Anyone know if there is any interaction using japanese knotweed, houttuyina, sida acutta, cryptolepis and hawthorne with rifampin and mino?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32507
   Posted 3/9/2018 12:01 PM (GMT -6)   
OriolCarol said...
Anyone know if there is any interaction using japanese knotweed, houttuyina, sida acutta, cryptolepis and hawthorne with rifampin and mino?



I used to know...can't find my notes. The only thing I read about was the Cytochrome P450.
Rifampin is in that group.

I'm quite sure JK, Hawthorne, are good.

But, one of them has the P450 (and Rifampin does as well) - can't remember if it's Houtt, sida or crypto..

I'll see if I can find out. If it does...you could separate it from your Rifampin. I think Riffy has a fairly short half-life - maybe 4 hours? So if you separated the offending herb by 8 hours...most of Riffy will be out of your blood-stream.

EDIT: - Found an older thread on it.

/www.healingwell.com/community/default.aspx?f=30&m=3651292
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

Post Edited (Girlie) : 3/9/2018 2:12:32 PM (GMT-7)


1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2421
   Posted 3/9/2018 2:04 PM (GMT -6)   
Yes, we've definitely made progress with herbal protocols.

Kid#2 seriously tanked despite being on abx for years. He went from a totally functioning kid to a non-functioning kid who couldn't attend school regularly, despite being on abx. We dropped all abx (I was beyond frustrated!) and switched to herbals. Although it's certainly no quick fix, we got him back from his all time low while on abx, and he continues to slowly make progress. He is much better (but not well). He now attends school regularly, which is a huge accomplishment compared to his all time low on abx.

We eventually dropped abx for Kid#1, and we did non-abx treatments. He is now well for 1+ years.

Kid#3 responded extremely, and oddly, well to a single abx for months. We saw improvements from that under-treatment. He has been up/down since then, but he's mostly functioning with minimal symptoms. Doing herbals for him and still trying to figure him out.

For me, I had huge benefits from a herbal approach for my systemic chronic atypical yeast infection, not much improvements from lyme herbals (but I'm not that sick from lyme despite being positive), and I am struggling with treatment with the babesia/bartonella herbals. So, I have mixed feelings for me and herbals.

I know somebody who did not get well on abx - despite years of being on them. He got worse and worse - unable to work. Finally, a different doctor wised up, took him off the abx, and then treated herbally, treated MACS, and mold. And now, he's so much better that it's truly remarkable the night and day difference.

Despite my negative experiences with abx, I personally feel that if abx works for you, then great. If it doesn't, then thankfully there are other options for us! Despite lack of consensus on "best" treatment for this horrid disease, I love this board because it supports multiple pathways. And I've learned that the "best" treatment for you is the one that ultimate works, and that may vary between people (even in my own family).

As with abx and herbals, lack of progress may simply mean not targeting the pathogen that is causing you the most grief at the time. Since testing is so flawed, it really is trial and error in both pathways (in my very humble opinion). We personally spent way too much time focusing on lyme herbals when bartonella/babesia were much bigger players than lyme itself. : |
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1510
   Posted 3/10/2018 4:27 AM (GMT -6)   
many people here have experienced relief with herbs. but there are also lots of people that have not. i am among the ones that i have seen my health going down while on herbs, and i tried many of them for almost 2 years. i got to a point where i was sicker than when i started the herbs, then i decided to do abx again, and and after 7 months i am almost asymptomatic and 99% recovered...

so my advice is try herbs but if they don't work for 1-2 years chances are THEY DO NOT WORK, and you should seek antibiotics , HBOT, LDN, or other combined treatments, but DO NOT STICK with the herbs for ever if you see no improvements or if you are constantly getting worse and worse.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1662
   Posted 3/10/2018 10:20 AM (GMT -6)   
mpost said...
many people here have experienced relief with herbs. but there are also lots of people that have not. i am among the ones that i have seen my health going down while on herbs, and i tried many of them for almost 2 years. i got to a point where i was sicker than when i started the herbs, then i decided to do abx again, and and after 7 months i am almost asymptomatic and 99% recovered...

so my advice is try herbs but if they don't work for 1-2 years chances are THEY DO NOT WORK, and you should seek antibiotics , HBOT, LDN, or other combined treatments, but DO NOT STICK with the herbs for ever if you see no improvements or if you are constantly getting worse and worse.


mpost,

Good to hear from you! Glad you're doing well with the abx. Thanks for this advice. It helps me, too. I'm 9 months into Buhner's protocols and still at tiny doses of a lot of things. Feel like I'm herxing or getting worse most of the time. It was you who gave me the push to start the antimicrobial herbs. Once I did, I had my first taste of improvement. I've had many relapses since and a couple of weeks of improvement only to get knocked back down again. No slow, steady improvement here. Bumpy, rugged ride.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1510
   Posted 3/10/2018 11:23 AM (GMT -6)   
i think it's a mistake to dismiss herbs as a very good option but at the same time it is a mistake to stick with them for years if you see no improvement. unfortunately with this disease there is no one size fits all, every path to success or failure is unique ...

some people do get healed without taking/doing anything special, while some people try all the treatments in the world and are still sick. The majority though, is in between, they are getting good relief with herbs and/or antibiotics.

JoyfulAmI
New Member


Date Joined Mar 2018
Total Posts : 5
   Posted 3/10/2018 1:05 PM (GMT -6)   
mpost, that's great advice, thanks! I think I'm coming at it from a place of very low immune function so perhaps taking an herbal route for a while, even it if doesn't hit the lyme too much, will build that up and prepare me for future mixed abx protocols.
I hate the idea of prolonging treatment by taking the wrong road, but I recognize that could happen no matter which direction I head.
So, we listen to our bodies, give each treatment a fair shake so we're not hopping around too much, and don't be afraid to try something different if what we're doing isn't working!
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