Is this subforum here just to bash alternative methods?

Topics with information and discussion about unconventional diagnostic and treatment methods, and unconventional views.
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lymeblood
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Joined: Mon 9 Jan 2012 8:55

Is this subforum here just to bash alternative methods?

Post by lymeblood » Thu 26 Apr 2012 6:32

I figured you guys would try to take a scientific approach to supplements/herbs, based on your conversations in other topics. You know, list studies, debate efficacy, methods, papers and source quality products at the best prices, etc.

List the pros *and* cons?

Seems all that is here is propaganda and a focus on the quacks and ripoffs. You guys do realize that those places don't make up the bulk of the money spent on this market, right? Just because a bunch of idiots think these things cure cancer with a mono-therapy approach doesn't mean the herbs don't have something that will help out the community. Squeaky wheel theory, anyone?

Could we quit focusing on the quacks and focus on what might actually help?

Or have you guys already determined that all of it is BS, because if it were *real*, modern medicine would already know about it? You know, like chronic Lyme?

There is ongoing research with herbs on efflux pump inhibitors and quorum sensing inhibitors, among other things, that would make herbals a good adjunct therapy on tougher cases, or perhaps a faster recovery, or a protection from damage done by inflammation.

Isn't one goal of beating this disease to recover as quickly as possible with as little long term damage as possible? Shouldn't we be using all the tools available to us? Isn't it obvious that long term abx isn't a complete answer?

It would be nice to have a good scientific dialog about alternative treatments here, especially for those people in countries or areas that do not have the access to these abx, or don't have insurance/health care.

Is it justified to have such bias towards a product that can potentially increase their quality of life?

70-80% of the *rest* of the world uses traditional/herbal medicine. If we can put together efficacy, bio-availability, and drug conflict issues, it would be a valuable resource for those that don't have the privilege for an LLMD, or perhaps health care.

Science is done every day on herbals/supplements, for a reason. There are some promising areas. Just because they aren't ready for mass production and regulation doesn't mean they can't help us beat this thing, or increase our quality of life just a little.

Yes, they should be considered drugs. They should be taken seriously. That's not happening here. I only see mocking and dismissal. It reminds me of what happens to certain people that have a certain disease. It's not very mainstream, and there's a lot of BS around it.

Let me give you guys an example of topics I'd like to see.

Potential natural abx against gram negative organisms. The evidence, the toxicity studies, other benefits, how to find a quality product, dosages interactions. Mechanisms of action...things like that.

Potential anti-inflammatory agents against TNF-a, etc.

Potential solutions for fatigue, for example adaptogens, or stimulants. D-ribose, ATP, etc. Not everything has to be herbal. You have OTC drugs that might have off label use based on understanding the mechanism of action.

Serious looks at possible resistance, especially with babesia, since malaria is notorious about it. Since there are genes that control that, and they can be switched on by quorum sensing, it is possible that resistance could be an issue in vivo in chronic cases. Blocking such things would also accelerate traditional abx treatment, and makes dosages of those abx lethal at previously sub lethal tissue concentrations, increasing the reach of these drugs to get at persisters in their niches, if that's what is really going on.

We know neurotoxins are a currently a myth. Biofilms might not be created by Borrelia, they could be opportunistic. Biofilms would still be a problem. They have proven that you can have them in your sinuses from other bacteria, as well as other mucus membranes (and the urethra? ouch), and abx won't cure them, and you have to have surgery to take out the tissue.

We could be trying to solve the immune system suppression from Borrelia with prescription meds, herbs, whatever.

Topics like these need to be discussed here. Not all this negativity.

:bonk:

Cobwebby
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Re: Is this subforum here just to bash alternative methods?

Post by Cobwebby » Thu 26 Apr 2012 16:01

lymeblood wrote:.

Let me give you guys an example of topics I'd like to see.

Potential natural abx against gram negative organisms. The evidence, the toxicity studies, other benefits, how to find a quality product, dosages interactions. Mechanisms of action...things like that.

Potential anti-inflammatory agents against TNF-a, etc.

Potential solutions for fatigue, for example adaptogens, or stimulants. D-ribose, ATP, etc. Not everything has to be herbal. You have OTC drugs that might have off label use based on understanding the mechanism of action.

Serious looks at possible resistance, especially with babesia, since malaria is notorious about it. Since there are genes that control that, and they can be switched on by quorum sensing, it is possible that resistance could be an issue in vivo in chronic cases. Blocking such things would also accelerate traditional abx treatment, and makes dosages of those abx lethal at previously sub lethal tissue concentrations, increasing the reach of these drugs to get at persisters in their niches, if that's what is really going on.

We know neurotoxins are a currently a myth. Biofilms might not be created by Borrelia, they could be opportunistic. Biofilms would still be a problem. They have proven that you can have them in your sinuses from other bacteria, as well as other mucus membranes (and the urethra? ouch), and abx won't cure them, and you have to have surgery to take out the tissue.

We could be trying to solve the immune system suppression from Borrelia with prescription meds, herbs, whatever.

Topics like these need to be discussed here. Not all this negativity.

:bonk:
Feel free to get the ball rolling if you want these topics discussed.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

lymeblood
Posts: 5
Joined: Mon 9 Jan 2012 8:55

Re: Is this subforum here just to bash alternative methods?

Post by lymeblood » Fri 27 Apr 2012 9:43

How's this for a start?

We all know there aren't as many studies in this area as we would like, nor at the quality that we would prefer.

What we are doing it playing guinea pig with ourselves, using the best logic/rational/information we can, so we can

1) not waste precious money
2) not cause harm to ourselves
3) find novel adjunct therapies
4) find effective combinations that give others a fighting chance, whether it be to buy them time until they can afford an LLMD, to keep them from getting worse while on a waiting list, or to use while taking a break from abx without letting "the three musketeers" ramp up their numbers.

When my SO got sick, I found 6 month waiting lists. We had to go herbal because the GP/PC doctors wouldn't even give us a test, or doxy. It took us from Sept to February to get a doc, and that was fast by Lyme standards. She kept getting worse by the day. We had to do something.

I think a place to start, is to take all the protocols (and/or suggestions of treatments) we know of, and tear them apart. Get a collection of common herbs that people have had success with, and whittle them down to what has the most evidence of effectiveness. Then the users can report on issues they've had, and any success, and just maybe, we can figure out effective dosing for most people. I have my own protocol I've developed based on these parameters:

1)an herb's success against gram negative bacteria, especially e.coli

2)anti-fungal capabilities to limit floral imbalances in the gut

3)low toxicity

4)easily accessible

5)cost effective

6)no/low contraindications with other herbals/prescription meds

7)does this plant/supplement have synergy with another herb or prescription med

8)does this plant/supplement have proven in vitro efflux inhibition properties, and can they be quantified

9)does this plant/supplement have proven in vitro quorum inhibition tendencies, etc.

10)since cysts are still debatable in some circles, we will catalog this trait, but not key in on it. There at least has to be some science behind it.

11)biofilms are real, perhaps not from borrelia, but borrelia could be opportunistic. Quorum sensing has been shown, at a certain density of bacteria, to begin biofilm production and expression of efflux pumps to allow resistance

12)bio-availability: Most herbs don't work, because the studies did crude extracts, that resulted in low or no bio-availability, so poor in vivo results. Nutraceutical companies have patented extracts and delivery systems. We can acquire these patents to understand their mechanisms of action, and see if we can mimic them with combinational dosing. For example, phosphatidylcholine and piperine additions to regiments, which are cheap, to coincide with more generic herbal products, to avoid expensive proprietary solutions.

Hearsay is a place to *start* looking for research. Junk articles talking about what they are *supposed* to do helps us narrow down our search terms. This is about all they are good for, and links of that nature would be considered step one. We would build off of that. Anecdotal will be useful for dosing, side effects, conflicts, but probably not much else. Papers can be found for free with enough digging, and if we could accumulate them here or some other place that's safe, it would help the community.

We aren't going to find too many double blind placebo tests using these things, for a myriad of reasons. That does not mean they are useless. Most herbs are effective, but they do completely different things than what tradition has passed along. Science has found out what these things are in many cases.

The purpose of threads of this nature would be to determine what chemical will most likely have what effect, then, based on risk, the community tries it out and reports, using guidelines set forth by the community to try to have some control over the data that comes in. We catalog this data, and then find out what we need to throw out, what only works under certain conditions in certain people, and what's a pretty safe bet to do X for most people.

I'm completely open to suggestions. I see this as an attempt at crowd sourcing information from Lymeland, and removing the quackery (if that's possible. :?: )

Cobwebby
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Re: Is this subforum here just to bash alternative methods?

Post by Cobwebby » Sat 28 Apr 2012 16:10

I don't think you are going to find enough of a community here to get the kind of data you want. I do know there is a community of people at Lymefriends.org who have an entire group devoted to 'alternative methods or treatments" Perhaps you can get enough of a patient base there.

BTW- how did your SO do? Was you SO ever treated with antibiotics?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

lymeblood
Posts: 5
Joined: Mon 9 Jan 2012 8:55

Re: Is this subforum here just to bash alternative methods?

Post by lymeblood » Sun 29 Apr 2012 22:36

Cobwebby wrote:I don't think you are going to find enough of a community here to get the kind of data you want. I do know there is a community of people at Lymefriends.org who have an entire group devoted to 'alternative methods or treatments" Perhaps you can get enough of a patient base there.

BTW- how did your SO do? Was you SO ever treated with antibiotics?

I had a feeling, after reading through some other places, that crickets chirp unless you're complaining about something in Lymeland.

We all know that prolonged ABX treatment isn't always a cure, so why aren't people taking serious looks at adjunct therapy? If they are smart enough to criticize the establishment about biofilms and cysts, you'd think they'd be interested in exploring anything that might work.

My SO is doing better by the week. She's been on ABX on and off (her gallbladder acts up, and we have to take a break), since January. 19 days of Doxy before the gallbladder acted up did nothing. 13 days of Ceftin before we had to take a break. It was obviously killing off bartonella as well as Lyme. Had to take a month off before we could change scripts and go in another direction. We've had good luck with Tindamax, about to up the dose to 500 twice a day. She's on amoxicillin 2 grams a day, and we just added Zithromax 500mg once a day, which is really, really kicking her ass.

Apparently the half life goes to 68 hours after 3~4 days. Inhibiting efflux pumps (both RND and PGP, most likely), has probably potentiated things a bit more than we expected. We didn't realize the half life was so extreme until a few days ago.

Still waiting on a break through in some way. Something to say, "now THAT'S progress!"...but it's all been small increments of improvement.

We think she's had it for about 10 years, didn't become a serious problem until Sept, and that's when it took out her ability to walk, and gave her crippling fatigue. That's when we started trying to figure out what was going on. Took till the end of February to get a doctor that would treat it.

Cobwebby
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Re: Is this subforum here just to bash alternative methods?

Post by Cobwebby » Tue 1 May 2012 14:29

Lymeblood- how was your herbal experience while waiting to see GP? What impact did it have on your SO's health, quality of life?
My personal feeling, and I am no scientist, is that herbal medicine might ammeliorate symptoms, but would not be able to kill the ketes.

My own mother drank vinegar water for years-I mean YEARS daily. She is now 101 years old! I have IC ,interstitial cystitis, so vinegar water therapy was very short lived for me.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

lymeblood
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Joined: Mon 9 Jan 2012 8:55

Re: Is this subforum here just to bash alternative methods?

Post by lymeblood » Wed 16 May 2012 14:38

Cobwebby wrote:Lymeblood- how was your herbal experience while waiting to see GP? What impact did it have on your SO's health, quality of life?
My personal feeling, and I am no scientist, is that herbal medicine might ammeliorate symptoms, but would not be able to kill the ketes.

My own mother drank vinegar water for years-I mean YEARS daily. She is now 101 years old! I have IC ,interstitial cystitis, so vinegar water therapy was very short lived for me.

The first herb we got on was Oil of Oregano. The first time she took it, she convulsed for about 2 hours. Classic seizure looking herx. No pain, just fatigue from all the shaking. That was off 10 drops. 4 drops is 114mg, it was at least 50% oil (not pure, that will mess with your stomach), so you're looking at 57mg x 2.5 =142mg of oil, of which 80% is carvacrol (115mg). There are all sorts of studies on carvacrol. It's ability to kill gram negative bacteria is not in doubt. The question is what dose can you tolerate.

It was obviously a herx, as it went away, and the next time, there were similar symptoms, but not as bad. It was a lower dose, of course, but you could tell it was killing something neurological. Buhner says it's not systemic. I call BS. I think his protocol is weak. There are countless herbs that are stronger than what he recommends, and they at least have in vitro studies, and many have animal studies.

Eventually she ramped up to 60 drops, placed in two 00 capsules, twice a day, with only a slight fatigue herx. It took a few months.

We still use the oregano, and it keeps the yeast in check. She was prone to yeast infections for her entire life until oregano use this last November/Dec. Even on 4 abx, she has no yeast issues.

That Buhner doesn't even recommend Oregano Oil for simple yeast control for adjunct abx therapy, to me, speaks volumes on his expertise. Since he's the (arguably) biggest name herbal guy, it doesn't bode well for the community.

Oregano kills the hell out of the 'ketes. No problems. The problem is that it's a pain to take on a regular basis in high doses, because you tend to burp it up, so you have to be careful to take it on an empty stomach and pile food on it. That gets tedious.

She had to get off of abx for the entire month of Feb, because Ceftin screwed with her gall bladder. Oregano kept everything in check. She even got better while on just oregano oil.

However, we are in a hurry, so we are using all the tools at our disposal.

There are several things that will kill each of the coinfections. You just have to take a lot of them together....and they tend to kick your ass worse than abx, and it's inconvenient. I do think you can cure Lyme with herbals, it just takes longer than abx vs a non-resistant strain. If you have a resistant strain, abx alone will never cure you.

Which is a whole other topic, but my research points to serious efflux of abx in protozoa and in borellia. There are several herbs that can stop/clog/slow down that expression of pumps, but you never hear anyone in the Lyme community talking about it.

In fact, I think the herbs that are currently popular in the community are pretty sub-par for what they are trying to do.

To try to wrap up this long winded semi-rant, I'm 100% positive that she couldn't have gotten better this quick, and blunt the herxes like we have, without the herbal protocol we developed. For context, she was "Mandy from Under Our Skin' bad, according to our Lyme friends and the doctors. And we haven't done IV yet. Her brain is coming back in leaps and bounds. The arthritis is gone. The neuropathy is a shell of its former self, and her moods have stabilized. The issue right now is fatigue and POTS, but it's not as bad as it was. We feel it's an Epstein Barr/Babesia thing at this point. It's been almost 6 months of full on herbs, and 4~5 months of abx, if you add all the fragmented weeks in there.

She's going back to work in 2 weeks if things go according to plan, and she will be in better health going back than she was for the three months she worked before she got on disability.

There's a lot left to be done. She's been too much of a herxer to get on IV abx. She's had issues with her gallbladder with doxy and ceftin. We've had to take it slow with zithromax, it's tough on her. She's upped the Tindamax to 500 twice a day. That's some good stuff, imo. No side effects from it.

The amoxicillin only works with our efflux inhibiting herbs. It worked in the beginning, but I think there was a development of resistance, or a limit of its ability to penetrate tissue, or both.

Our herbal protocol is complicated, and expensive. It's also science based. If people are interested, I'll go into detail at some point. I don't know if it will work as well with anyone else, mainly because of unknown conflicts and side effects with other meds and other peoples' metabolisms, etc.

Vilda
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Re: Is this subforum here just to bash alternative methods?

Post by Vilda » Tue 4 Nov 2014 17:15

Goodday Lymeblood !

Definitely am I very interested in your herbal protocol.
Please, will you tell more detailled information ?

Loads of good luck !!!

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ChronicLyme19
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Re: Is this subforum here just to bash alternative methods?

Post by ChronicLyme19 » Tue 4 Nov 2014 18:01

Hm, I'll have to ask my LLMD what he thinks about oregano. I don't think it's in any of my current formulas. I've only had herxing from eating fresh basil (cheese pizza covered in it and a pesto pizza), which are both high in basil.

I'm completely with you on the herbs front. I definitely think there are some herbs that help with certain things. Problem is, like you said not much is organized and not many trials, so it's hard to know which will work for you and your set of infections and genetics. The trials that do come out are often from China and I've heard the research there can be a little unreliable.

Although I would say that at least if you are going the herbs route, ask your primary care to monitor your blood work or find an experienced herbalist. You can also do serious damage with the herbs by ramping them too fast and your body won't be able to keep up. Make sure you get your herbs from reliable sources, to avoid contamination issues. Also, I would advise keeping a journal that way it'll be easier to tell if it's just placebo effect or if any of your symptoms are truly flaring.

I've had good success with some herbs in combo with the abx (abx alone wasn't cutting it), but nothing from others. There's a lot of snake oil out there and it's hard to tell. Like you I wish there was more research devoted to this area, to figure out if something works, why it works, what the active chemicals are and what is the mechanism they work on. There's a reason some of these plants have been used for millennium. I'm sure some of it is placebo effect, but when you are as sick as you are with tick borne diseases, you'll see quickly what works and what doesn't.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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