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Lyme validity

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I would try the herbal route first. But yes it is very possible based on those results and your past experiences that you could have contracted the disease. Some of your symptoms sound like co infection as well though. Check out information on Dr. Stephen Buhner, or Dr. Lee Cowden.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Is there any indication that those work on borrelia infections in actual people? To the best of my knowledge they've only been trialed in petri dishes.

Yes, absolutely thousand's have fully recovered by the means of the Cowden,Buhner, and many other herbal protocols. It can sound a bit "alternative", but when you really get into the treatment and use it for yourself, you can see it is just as effective with far less risks then long term antibiotics. Many studies have been done on the effectiveness of herbs in treating viral infections, bacterial infections, fungal, etc. The information is easily attainable, the only issue I would see is the whole "chronic lyme" which is still a hugely controversial subject which most doctors and researchers usually don't want to associate with.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I was prescribed the Cowden protocol by KdM when I couldn't tolerate oral abx, many of the top LLMDs in the US and the UK do as well now.(also Buhner) I presume this is because of good results otherwise why would they??? Unfortunately even one drop of Samento is my start, how people get up to 30drops is beyond me.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I guess until there's a greater acceptance of late stage lyme / TBIs there's going to be a dearth of 'robust' clinical evidence for any treatment. And treatment so often seems to be involve quite a bit of trial and error and false starts and changes of direction — not so easy to trial.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
So nothing has been published?

I'm guessing not, other than in vitro stuff. I'm not sure how anyone would get funding for a decent sized trial for herbal protocols.

I definitely don't want to get into a for/against herbs argument, or herbs v antibiotics, so the following question is purely for educational purposes (of me!): is there much of a body of clinical evidence for abx in late-stage lyme disease? I've had a bit of a look and the first thing I found was not encouraging (but then it was on the CDC website so no surprise there). I know I've looked before but I get a bit overwhelmed whenever I start trying to research research. For us non-scientists even reading a few abstracts is often enough to induce scrambled brains.
 
Messages
15,786
I'm guessing not, other than in vitro stuff. I'm not sure how anyone would get funding for a decent sized trial for herbal protocols.
They have name-brand versions which are sold (Samento, Banderol, etc), and they have funded the in vitro trial involving those products in the past. They heavily reference that trial in promoting their products.

Hence they seem to have the capability to run a trial, if they want to. But I wouldn't expect them to publish if they get a null result, so that might have already happened.
 

duncan

Senior Member
Messages
2,240
@sarah darwins , here are some late stage Lyme abx studies. Just names and dates, but hopefully they will help start you in the right direction. IMO the earlier ones are the better.

Also imo, none is particularly good. The three oft-quoted RCTs are from Klempner then Krupp then Fallon, and my opinion of those is not printable.

Steere 1985
Klempner 2001 (technically TWO studies rolled out)
Kaplan 2003
Krupp 2003
Fallon 2004
Dattwyler 1988
Pfister 1989
Hassler 1990
Pfister 1991
Steere 1994
Whalberg 1994
Okski 1998
Fallon 1999
Logigian 1999

What I derive the most insight is from case studies - but as you might expect, those are usually success stories. Wonder what the true ratio of success stories to failures might be.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
They have name-brand versions which are sold (Samento, Banderol, etc), and they have funded the in vitro trial involving those products in the past. They heavily reference that trial in promoting their products.

Hence they seem to have the capability to run a trial, if they want to. But I wouldn't expect them to publish if they get a null result, so that might have already happened.

Thanks. I didn't realise Samento was a brand name. I thought it was just another name for the herb. It would be nice if they could run a clinical trial, wouldn't it. Seems like a lot of people are using those herbal products so I'm sure there would be plenty of volunteers.

@duncan — thank you. That's a beautifully simple list! I've copied your post onto a note and will go through them some time when I'm feeling half-alive.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
thanks for the info guys. Still absolutely no clearer if i should go down the herbal or ABX route. I'm leaning towards ABX simply because the out of the success stories i've heard, more of them than not used antibiotics at some point
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Also my CD57 was within range (188) I have read that this is not a reliable marker for lyme, but still a curious result, as I would expect it to be low with such a high lyme reading
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Hence they seem to have the capability to run a trial, if they want to. But I wouldn't expect them to publish if they get a null result, so that might have already happened.

Empirical in vivo studies of chronic Lyme are not really possible, are they? For that you'd have to be able to detect the pathogen in fluids, which of course doesn't really happen. Moreover conducting a study on acute Lyme cases would be considered unethical, as only a drug can cure a disease. Now consider there's no monopoly to be had flogging herbs. Is it any wonder there aren't studies. Oh yeah, and if you try to study chronic Lyme you're branded a heretic.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I think herbs are a good place to start with chronic Lyme. All the LLMD's I've read about use them. Even a doctor as pro-drug as Burrascano has said that chronic sufferers are not going to get well on drugs alone, that a combination with alternative medicine produces the best result. And Horowitz states that 99.9% of chronic patients will relapse without some form of maintenance therapy, and for this he usually goes to the herbs.

These guys have decades of experience between them and are recognized as a couple of the best LLMD's out there. That along with thousands of sufferers benefiting from herbs is pretty convincing to me.

It’s also thought that pathogens don’t develop resistance to herbs as they do to drugs. And the herbs tend to have fewer negative effects.

Although he's not my favorite, I like what Klinghardt has said about antibiotics in chronic Lyme; that they should be used as a pea shooter towards the end of treatment, rather than a canon at the beginning. He alludes to the futility and risk of using drugs without addressing detox, diet, lifestyle, etc. Anecdotally there are too many patients made worse with antibiotic treatment to not take this seriously.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
And Horowitz states that 99.9% of chronic patients will relapse without some form of maintenance therapy, and for this he usually goes to the herbs.

im interested in where you got this quote from? as i just read a quote from him saying he feels 75% can be usually be cured with antibiotics?
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec

Sidereal

Senior Member
Messages
4,856
While their efficacy hasn't been established in human studies, these herbs are clearly not inert substances. I tried Cat's claw once (Samento is the branded version, if I understand this correctly) and I had a vicious Herxheimer reaction. My standard Lyme tests are negative.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
So i had my phone appointment with KDM

In honesty, i had my doubts, but the more i talk to this guy, the more i realise why people rate him

He said looking at my results, he thinks the most sensible approach is to treat my gut first, he said that he wasn't sure if the lyme was an issue or not, he said 4 out of 5 people that test positive dont actually have a problem with it, which opens up a whole different debate over wheather some people who don't look at the whole picture are treating with long courses of ABX needlessley and not seeing improvements.

He said that the results indicate huge levels of bacterioids in my small intestine which are out of balance (not SIBO just too many of the wrong kind), which would have been triggered by an immune assult (which he reffered to as the match) which could be lyme, the vaccine I got at 19, or mumps. He said there was no point going after something like lyme until the fire was put out ("we'll deal with the fire first, then look for the match") He said there is a chance that by bringing my gut health into balance, other things will fall into place.

I was some way relieved as with all the research I was doing (I know being your own google doctor is never recommended, but I just can't help myself when I'm sat around feeling like death!) was pointing towards jumping in at the deep end with long courses of IV ABX... perhaps that will come in the future, but for now, we're treating things sequentially with pulsed targeted antibiotics, probiotics, and things which will raise immune function.

I would go down the natural route, but in honesty, ive done years of things like oregano, olive leaf, neem, monolaurin, etc etc. and have nothing to show for it except an attick FUUULLL of supplement bottles and a collection of amazon reciepts that would make me look insane or like an absolute hypchodriact to a healthy person

Anyway! Just thought I'd keep y'all updated

Much love, hope winter isnt being too hard on any of you!