Switching from herbals to antibiotics and nervous

Can I ask why you are switching - if you and your Dr. are both leery/nervous?

Yes - please do one at a time...I would even suggest half dosage of Rifampin before going to full dose.

Start with the zithro if you've had a reaction before...then you'll know for sure it's the one and you can stop it right away...You could go on Minocycline instead if the zithro is a problem.

I see you're increasing thyroid meds and LDN...maybe you want to do those first...and again...only one at a time. maybe stay on the herbals you're currently on for a few more weeks while you adjust to the change in thyroid and addition of LDN.

I have read that LDN can affect the thyroid meds...so you don't even want to start those together IMO.

I wish you super good luck. When you "try" something, you can't have regrets. You will look back and say "I tried it."

I can't do antibiotics..... I puke them up really good.

Prayers for a good experience!

Oh my. I am mixing allopathic with natural. As much as I didn't want to jump on the antibiotic train I felt my lung pain got to the point where I had to. I may regret something at some point but the difference is that I am making my decisions rather than trusting a doctor. If I mess up then I am prepared to live with my choices. I am not prepared to live with choices that others make in my behalf. This is the biggest factor with the choices I have made.

I feel more confident in my ability to collect information and make an educated guess than a doctors ability to guess for me. If testing were accurate and I could get the tests I requested maybe things would be different.

We are not often informed of the negatives by doctors until something goes terribly wrong, and then it is then disclosed to us that 'by the way sometimes that negative outcome I never warned you about happens'.

Even the professional section of drugs.com often tells doctors what negatives NOT to tell their patients with regards to certain drugs.

I can live with consequence if I messed up as opposed to being misinformed and suffering the consequences of the actions of someone who was supposed to know better instructing me what to take, even if it were to result in death or debilitation.

I have confidence in certain allopathic and natural treatments. I have confidence in my peers who say this treatment has helped them. But I have no confidence in the medical system as it has failed me one too many times.

We all start clueless. It has taken much time and research on my part but this is my health and my life and it is worth it. If I don't know or am not sure, I am not too proud to ask. I can only suggest that you educate yourself as much as possible and trust your instincts. Learn all of your options natural and allopathic and the warning signs.

I wish you the best but am not qualified to say do this or that. All I can disclose is what I have tried for myself.

I also began treatment herbal only. My LLND is a microbiologist who focused her studies on Lyme and Co-infections. She's fresh out of UNI, but is working alongside a homeopathic ND who specialises in chinese herbs to restore the body. So, for the 1st TWO YEARS Ive been on herbs and natural remedies.

It wasnt until this past August that my ND team switched to doxy. I was fine on doxy, but then switched to amoxicillin and had severe allergic reaction to that, as well as the BEG nasal spray.

Perhaps, the herbal remedies dont cross the blood/brain barrier; which could be why some Chronic sufferers arent getting remission w/herbals alone Some will say "yes" herbs DO cross the bloodbrain barrier, but they fail to provide scientific proof.

I am now day 2 using Alinia= hope & PRAY my body accepts it!!!

With all that said-I think we just get SO DESPERATE and try just about anything we can to get better!!!

Many of the herbs used are known for their neuroprotective effects and many of us get neurological herxes when using them. And there is certainly evidence that some components of some herbs cross the blood brain barrier. It would be silly to say "herbs do this" or "herbs don't do that". They are highly varied. Not all herbs cross the blood brain barrier but some definitely do and that's why it's important sometimes to try different ones if you're going that route since we have limited evidence on which ones do and which ones don't.

So far, I've tried doxycycline, artemesinin, byron white's a-bab, kw Lyme Formula (herbal) red sage, skullcap, Knotweed. My ND started me out on the doxy, artemesinin, and a-bab. Then later he gave my the kw Lyme Formula. I bought the buhner books and am trying those herbs while I await an appt to see a new doc who is an ilads fellow. I had no ill effects from the doxycycline 200mg bid, or the artemesinin. He didn't tell me to titrate up th doxy so I jumped right in at full dose. Waited a few days to start the artemesinin, then a week to start the a-Bab. OTOH, A-bab, kw Lyme, red sage, Knotweed, skullcap made me want to crawl out of my skin at tiny doses.

I'm not convinced the herbal route is for me.
Maybe if the new doc gives me other abx and I herx bad, I'll get religion. Even Buhner says in his books that many people get complete clearance with abx; I hope you're one of them.
Wishing you easy sailing from here on out.

Post Edited (BJD55) : 4/13/2017 6:59:40 PM (GMT-6)

BJD lowering the dose can really help mitigate side effects. Some of Buhners herbs are very strong and I totally failed even on his minimum doses. I now take 1/4 his recommended minimum dose of knotweed alone and am doing much much better microdosing it like this. I still get herxes but they leave as quickly as they come. In fact I know many who can't tolerate his doses but are successful on much lower ones. I have no clue why they're so high in the book. Edit: oops kratom brain got me. I didn't see where you said tiny doses. When you say tiny doses how small? I know some who literally go by a drop of tincture at a time

Ma10 I just mean herbs that are potent broad spectrum antibiotics with good absorption and distribution when I say that. Biocidin is berberine based which is a great antibiotic... for GI pathogens. Liposomal delivery? Getting a little theoretical there. Do they have data to show it enhances the effect? And at that point why bother formulating it when there are herbs with better absorption? That said I've tried core berberine and biocidin and biocidin did nothing whereas core berberine had me herxing like mad and cleared up a lot of symptoms while I was on it. I know my experience is limited but I was dissapointed in biocidin. I don't like Cowden either. He uses plants with little to no scientific research or even documented history of use or formulations you can only get through him. Some people have success but I can't say I'm surprised for those that don't. Some of the Byron whites formulas don't look bad but I don't know much about them or which one you took so I can't comment. I haven't tried silver either. All of that said is why I really like Buhner. Buhner doesn't throw a sales pitch and he uses the herbs as indicated rather than trying to pump someone's veins with poorly absorbed curcumin and berberine through unproven biotechnologies. There are so many plants that produce so many drugs I just don't see the point of that at this point in time. I also like that Buhner gives great explanations and leaves you with countless options for experimentation rather than providing a one-size-fits all formula. In essence it's not even so much a protocol as a personalized approach to treating Lyme herbally. But I'm not saying this is the route you need to go. If antibiotics seem right then you do it how you feel you need to. I'm only saying this because of your apprehension. There is no scientifically justified reason to think abx are more powerful than herbs so you can feel reassured there is an alternative out there for you. Tinidazole might be better than berberine for Lyme. And for one person doxy might work better than houttuynia. So abx might totally help you and I'm wishing you the best. But plants make drugs every bit as powerful, in fact more so, than labs. As with all things it's about finding the right tool for the job. So if you ever find the need to go back maybe give Buhners a try. And by that I mean reading the book and customizing it as opposed to the condensed version online. I react pretty strongly to knotweed though not everyone seems to. Buhner has a book specifically on herbal antibiotics too which overlaps some of his coinfection protocol. Those tend to be a bit more broad spectrum and ones like sida acuta and cryptolepis I find to be extremely potent as abx-type herbs. That's the extent of my personal experience with "heavy hitters" but I know there are many others throughout his books that are likely to be similar. He tried to get a little too specific sometimes for the sake of scientific credibility but don't get hung up on it. His babesia protocol hit my Lyme in the nuts for example. These plants won't kill everything but they'll kill more than he lists. He just tries to back it up with what's been researched. Anyways just some thoughts. But one things for sure, get some specifics from your doc. One of the many reasons I picked Buhner over abx is because I can't stand working with doctors. They have no clue the level of reassurance and information us patients require after being neglected by the broader medical community. They just think "I'll write them a prescription and they'll be on their way" and it's like "doc let's set a 3 hour app for all the questions I have". You gotta be vigilant about that if you're feeling this way. I honestly think that believing in what you're doing is a big part of healing. So you need to figure out the strategy your doctor and you are going for so you can move forward with confidence

Post Edited (Psilociraptor) : 4/13/2017 7:57:40 PM (GMT-6)

Great discussion everyone.

I pull my hair out when an "herb vs abx" debate pops up… anyone involved in this insane treatment journey knows that none of us has much similar in our experiences and that there is NO panacea and that it's a step-by-step process in discovering what we need, when, why and how.

And what you're doing now is about now… and you might need to switch things at some point.

Out of all the horrific challenges that a typical Lyme patient experiences, I do feel somewhat grateful that while a nightmare in figuring it out — at least we really do have options when things aren't working. The downside to that is it can take forever to figure out what we need.

MA10 -

Good for you! You're switching directions and that is always hard to do. I am a HUGE believer in investigation and exploration because healing from this mess is always dynamic and an evolving process.

Here's another perspective that might apply to your situation -
I also started out on all-herbal antimicrobials. For me, it was a matter of being so ill that I wasn't able to tolerate much and it's easier to downsize herbal doses than it is pharma meds. Although A-Bart was so intense I ended up in the ER…

I think the herbs helped me with a very low-key treatment while I prepared my body in other ways for broader treatment (I needed to heal my gut and address a severe yeast/fungal issue before getting to far into any treatment).

Also, I think very few of us really understand what infections we really have and what we're fighting. We know of the key TBD infections but seriously, if the wild white-footed mouse is now the main host, this is a rodent. Think of the disgusting stuff running around in their blood stream. SO I see the herbs as broader coverage for God-Knows-What we are carrying. I could be wrong but I just see it as hitting more stuff.

This is a little confusing but I did well on very low herbal doses at first. Then I switched to IV abx and it was so difficult to get to optimal doses, took about a year and I relapsed a few times… but I slowly got much better, stronger, healthier. At this point I feel I've maxed out the efficacy of the abx and I'm ready to transition back to the herbals that I have already started building into my protocol and then will work to increase to a comprehensive protocol over time. This is NOT what I started out to do but this is the path I eventually found. Who knew?

You've plateaued on the herbal protocols and now's the time to try something very different. I agree that doing abx means adding in a few more things than just abx - you need to prevent yeast/fungal overgrowth - try a many-multi-strained, fresh probiotic, add in a natural anti fungal, and make sure you have a sugar-free diet.

But there are also a few other things that you can do - changing your detox protocol is one thing - make sure you have all bases covered (gut, brain, skin, liver/kidneys). And evaluate if you need to focus on healing other parts of the body as well as the antimicrobial part of the protocol.

As mentioned, change only one variable at a time and keep a written record of it if you can.

Keep us posted!

-p

Psilociraptor said...
BJD lowering the dose can really help mitigate side effects. Some of Buhners herbs are very strong and I totally failed even on his minimum doses

I think I learned my lesson this last trial of herbs. Each new one I've tried, I felt pretty good at my 1st dose of 1 drop. Then I add a drop every few days. With byron white a-bab, I made it to 5 drops bid then after a week melted down with anxiety. Gave it a rest for a week, then tried again at 1/2 drop 1x per day. I could feel the anxiety start up after 10 minutes, though mild and tolerable. After 12 days of 1/2 drop, the anxiety rushed in hard. That was it, I quit that stuff and ND gave me kw Lyme Formula. He said start at 1/2 dropper full and work up to 2 droppers full 2x day.said it was gentle and tolerated well by kids. Nope. I started at 3 drops and worked my may up to 1/2 dropper full after 10 days. Again on day 12, intolerable anxiety came on. Tried again 4 days off of that, then couldn't tolerate 1 drop per day. Then red sage turned on me on day 12 after working up to 5 drops. This is day 3 without the red sage and it still hasn't washed out. I'm hoping that some neuro Anti tox will help. Gonna try borrelogen next and stay at 1 drop for at least 12 days. I'm still incredulous that such miniscule amounts of this tincture could cause a die off reaction in 10 short minutes. Whereas there was no adverse reaction to 200mg doxy bid for 30 days. Does not compute.

^I agree. One thing ive noticed, if you've broken the seal there's not much turning back. Detox or give your body time to do it itself. Ie taking less still produces a terrible effect. When that happens i normally have to wait weeks to months for everything to flush out of my system before i start back up. I think of it sort of like filling up a clogged sink. A drop of water doesn't hurt if it can be drained by the end of the day. A cup of water doesn't hurt if the sink is currently empty. Heck you could add 10 cups and be fine. But once the sink is full you can't even take a drop without it spilling. Silly analogy but it's fit my experience exactly. If i go too fast i have to stop, period. Not reduce the dose, but stop, relapse, live through that whole misery, wait for things to calm down, and then start again. Also, i can only speak for myself but adjusting the dose every few days is too quickly for me. I've been taking knotweed powder at 1/4tsp 3 times a day and i've been on it at this dose for literally a month and this is the first time i've done well. Last time i increased the dose every time i thought i was handling it. But what i didn't account for is that we have different infections that are vulnerable to different doses and have different life cycles. So i herxed out all my lyme in a few days, felt great, increased the dose, repeat. And then about a month in i was feeling awesome and then i got slapped with something really nasty i have never felt before. Didn't feel like Lyme at all but acted just like a herx. Maybe babesia or ehrlichia, i don't know. This time around i stayed on 1/4 and did not change until i had those symptoms. And when they finally came on a month into treatment I was a little miserable for a day but pulled right on through and moved forward like i couldn't do the first time. So what I'm getting at is... Low and SLOW. Even if you think you're doing well, treatment can catch up with you and it's not always linear. One organism might be susceptible immediately and another might be on a month long replication cycle. So you ramp up the dose thinking you're handling it and suddenly start feeling the other guy reacting to a massive dose.

As for the doxy, that is perplexing. Did you get any benefit from it at all? It makes me wonder if Lyme is your primary issue. Since you're clearly herxing from some herbs. I know how it is to be sensitive though... My doc made me a formula that was supposed to be "cooling" to the GI tract and i herxed really hard on it... smh

Psilociraptor said...
^I agree. One thing ive noticed, if you've broken the seal there's not much turning back. Detox or give your body time to do it itself. Ie taking less still produces a terrible effect. When that happens i normally have to wait weeks to months for everything to flush out of my system before i start back up. I think of it sort of like filling up a clogged sink. A drop of water doesn't hurt if it can be drained by the end of the day. A cup of water doesn't hurt if the sink is currently empty. Heck you could add 10 cups and be fine. But once the sink is full you can't even take a drop without it spilling. Silly analogy but it's fit my experience exactly. If i go too fast i have to stop, period. Not reduce the dose, but stop, relapse, live through that whole misery, wait for things to calm down, and then start again.

As for the doxy, that is perplexing. Did you get any benefit from it at all? It makes me wonder if Lyme is your primary issue. Since you're clearly herxing from some herbs. I know how it is to be sensitive though... My doc made me a formula that was supposed to be "cooling" to the GI tract and i herxed really hard on it... smh

Good post raptor, that detox analogy seems logical and could be what's happening with me. Lesson learned about low and slow.

As for the doxy, hard to say if I benefitted from it, if so not dramatically. My igenex tests were Lyme bands 23-25: I, 31+, 41+ on igM. Igg was 41++ only. Pcr negative. I didn't get the 31 Epitope test. Babesia duncani: Positive fish, and igM. Negative igg. Bartonella igM positive, igG weak positive. Erlichia igM weak positive, igG negative.
I also took 400mg /day of artemesinin which caused no herx. My night time temperature regulation improved and fatigue lessened a bitbi think from the artemesinin. Puzzling about my tolerance for those and not the tinctures. OTOH, I tolerate motherwort, bacopa, and passionflower tinctures. Oh so frustrating. No wonder so many docs deny Lymeco, we're definitely high maintenance patients requiring a highly nuanced approach.

As for detox, daily dry brushing, epsom /h202 bath in hot water, (no problem tolerating that) acv, alka gold, blue heron detoxifying complex, psyllium, >64 Oz lemon water per day. Waiting on jernigan antitox neuro formula to arrive in the mail along with molybdenum, and wobenzyme PS. I've done a few coffee enemas that seemed helpful but having difficulty motivating myself to do those more than weekly. I wanted to get one of those portable tent saunas but read they smell of Chinese made plastic and out gas. Seems like that would defeat the purpose.

Girlie said...

Pirouette said...
One more thing -

There are a lot of people doing an all-herbal protocol but I'm not sure of anyone doing an all-pharmaceutical protocol! So no one should ever feel like there is a need for all-or-nothing approach. Blend, combine, whatever your body needs and however it needs it.

CUSTOMIZE and explore.

-p

There are a few of us doing all-Pharma for treatment. (but use support herbs, other supplements)

I'm one...I was doing a combination...but it was just a bit too much - taking everything.

I will be going back on the herbs...before ending treatment though.

I'm sure you've said it before Girlie, but would you mind telling us again about your rationale for the switch from herbs to pharma treatment?