New protocol (horowitz)

[Hanna]

@acrosstheveil and @Dufresne ,Thanks !

 

[acrosstheveil]

i'm trying to hit everything at once so i end up taking like 150 drops at a time between all the different tinctures (CSA, andrographis, teasel, red root, boneset, and houttuynia)....maybe I should rotate a couple. It's a lot of alcohol for someone who doesn't drink. These tinctures are definitely doing something. not sure what. I'm getting chest pains after taking them.

 

[Little Bluestem]

That red root, backed up lymphatic thing is something more people have to understand.

Can you expand on this?

 

[Dufresne]

Can you expand on this?

There have been a few studies on "chronic Lyme disease" where supposed sufferers take courses of antibiotics and fail to improve. The supposed take away message is that long-term antibiotics aren't even helpful so they shouldn't be prescribed. This is in addition to the notion that ongoing infection cannot be proved. I believe these are studies intended to deny the existence of the condition: chronic Lyme doesn't exist and it's unscientific and unethical to prescribe antibiotics for patients complaining of it.

My statement about red root relates to the idea that pathogen killing won't take place if the system can't handle the toxicity. Red root is thought to clear the body's sewage (lymphatic) system and this makes way for killing to take place. This is what I seemed to observe in myself and others have reported. Moreover some with chronic Lyme experience rather intense die-off from antibiotics, and this can be prolonged. So either way, if the prescribing doctor doesn't know what they're doing the patient is not likely to end up feeling any better. If this is indeed true then those studies I mentioned above say very little.

Lyme die-off is proven to be toxic and highly inflammatory. It's my opinion detoxifying and calming the inflammation is just as important as killing the borrelia in chronic disease. It takes time and one has to be patient to eventually prevail. It's most likely the case that the bug will not be eradicated, but controlled. That's how one feels better. This is the approach of the herbalist Stephen Buhner as well as the LLMD Richard Horowitz, or just about any other LLMD out there nowadays. Horowitz states relapse is the norm, not the exception. Interestingly Buhner believes in antibiotics for chronic sufferers when necessary, but that they should transition to herbs to maintain improvements, and Dr Horowitz suggests pretty much the same thing. I think this reflects the reality of chronic Lyme at this time, arrived at, in this case, independently by both an herbalist as well as an allopathic physician.

Buhner's strategy for borrelia is as follows:
1. Inhibiting the cytokine cascade;
2. Enhancing immune function;
3. Relieving specific symptoms;
4. Provide antibacterials as needed;
5. Support of human contact, which he considers essential.

This is taken from:
http://www.betterhealthguy.com/images/stories/PDF/BUHNER CONF NOTES.pdf

The focus is clearly on having the patient feel better as soon as possible. Further progress and pathogen load reduction can be built on this. The idea of suffering through an interminable period of die-off is antiquated and wrong. A perfect example of this is the Marshall Protocol. Lyme treatment has come a long way in the last five years and the criticism that these folks don't get any better and are being taken advantage of by pandering LLMD's is no longer even a remotely plausible charge.

BetterHealthGuy notes about Buhner:
As far as his and his partner’s experience with this treatment protocol and patient outcomes, he said that they have a 75% cure rate (patients stay symptom-free); 15% need to take some maintenance herbs to remain symptom-free; 5% get some help; and 5% get no help. He mentioned that he doesn’t like to use the word “cure”, as he doesn’t believe the bacteria leave our body completely. Instead, he strives for his patients to be “symptom-free”.

Dr Horowitz states:
So, I’m fairly sure when I look at my success rate with treating Lyme patients, usually, I’m over 90%, but there’s always at least 7% of my patients, no matter what I do, I couldn’t get them better, but this year was the first year, RealTime Labs in Texas allowed us to finally do the mycotoxins studies in my office, and now, I’m finding a lot of these resistant patients, who weren’t getting better, are in fact testing positive for mycotoxins. So, this might have been the missing piece.

You can find the terrific interview with Dr Horowitz that this one is pulled from in Justy's thread.
http://forums.phoenixrising.me/inde...une-summit-great-interview.34273/#post-532709

Horowitz often likens Lyme Disease, what he calls Multi-system Infectious Disease Syndrome or MSIDS, to a patient coming into a doctor's office after stepping on a board with nails through it, and the doctor removing one nail and the patient still complaining of not feeling better. Well he explains, that's because there are another seven nails in the patient's foot. In the last quote above he mentions mycotoxins. This would be an example of one of these nails. It's not just the matter of treating a single infection. I believe this is the reality most of us are dealing with, even if we don't have borrelia and co. This is something the mainstream doesn't really understand. LLMD's, for whatever reason, have beaten ME/CFS researchers to this understanding, though the latter may be catching up. Brewer's study finding mycotoxins in ME/CFS at the rate of 93%, while finding them in none of the controls is evidence of this. As is Mady Hornig's theory of genes, environment, and trigger, as well as the focus on the microbiome. I believe the ME/CFS community has been over-focused on a boogeyman pathogen for too long and it's hurt the way we look at the disease, and of course the way we treat it.

I've found educating myself in cutting-edge chronic Lyme to have been very encouraging and empowering.

So @Little Bluestem, you ask a simple question and you receive my soapbox spiel. I hope it's all right. The part about red root is in there somewhere... I think.

 

[acrosstheveil]

loved reading that post. i guess im hitting it hard since i'm following horowitz & buhner's protocol's simultaneously. going to take more red root before anything else.

mycotoxins could very well be an issue. lyme feeds on toxins and absorbs them so that could be the very reason for high levels of mycotoxins. in fact, my symptoms got much worse 10 months ago after an exposure to mycotoxins and I have been having severe anaphylactic reactions to a number of things since. Even with lots of vitamin c, iodine, and other ways of detoxing.

 

[Little Bluestem]

Red root is thought to clear the body's sewage (lymphatic) system and this makes way for killing to take place.

Thank-you, @Dufresne . Some people with ME, including myself, have symptoms of problems with the lymphatic system. While I seldom have lymphatic symptoms now, I may look into red root.

It's my opinion detoxifying and calming the inflammation is just as important as killing the [pathogen] in chronic disease.

I think detoxifying and calming the inflammation is important in ME as well.

 

[cigana]

@Dufresne I always think Lyme or rather MSIDS is an excellent candidate for CFS, but then I remember the Schutzer study on proteins in spinal fluid (http://www.sciencedaily.com/releases/2011/02/110223171235.htm) which apparently suggests they are different diseases.
Do you have any views on this?

 

[Dufresne]

I won’t pretend to understand the science but it does seem like a fairly solid and interesting study. I remember reading the abstract and discussion when it was first published, which just so happened to coincide with my testing positive for Lyme and co in 2011. I recall wondering where I would fit in this study. I still do.

So you’re asking me if I think ME and Lyme or MSIDS are distinct conditions. I believe ME can be incorporated into MSIDS, if I’m remembering Horowitz’s definition correctly, though he does mostly focus on Lyme and co, and I don’t believe the majority of CFS sufferers have Lyme. The only symptom of ME that causes it to possibly stand out as its own entity is post-exertional malaise. Many people with neuroimmune diseases experience the other symptoms, from MCS to electrical and food sensitivities, to fibromyalgia symptoms, POTS, cognitive dysfunction, etc, and can be diagnosed by each symptom. However as soon as they suffer PEM as well they apparently have ME/CFS.

Don’t get me wrong, I’m grateful ME is recognized as its own entity, as that’s the only way it’ll receive any funding and research, but sufferers with PEM as well as other neuro-immune symptoms likely won’t fall into neat categories when the causes of these symptoms become clearer. I think it’s far more complex than each symptom having only one environmental or genetic cause.

We read about patients with ME/CFS presentations, including PEM, being treated in a variety of ways by leading doctors and greatly improving, even to the point of being cured in some instances. What I find interesting is that it’s seemingly different pathogens and problems that are being diagnosed and treated: Montoya seems to have found a Herpes group that responds to Valcyte; Peterson has apparently cured a few cases by treating Parvo B19 with IVIG; others shed their PEM through extreme mold avoidance. So it appears if we address the underlying stressor we can get better and the PEM (CFS) goes away.

Did the Parvo patients have ME/CFS? What about Montoya’s Herpes group, or even Lerner’s patients who respond to antivirals and/or antibiotics? How about the improvements with Rituximab? Did they see a reduction in PEM as well?

I do acknowledge this perspective is informed by my own minority experience. My CFS diagnosis came back in 2006 after years of google-searching my bizarre symptoms. Of course I’d come across CFS numerous times in my internet searches, but I never considered it because of the ‘fatigue” in the name. After all I was an exercise junkie and working as a personal trainer. But by 2005 PEM had begun to creep up on me and I was subsequently diagnosed. Interestingly my ankylosing spondylitis crept up alongside it. Perhaps there is some shift in immunity towards TH17 or further auto-inflammation that predisposes those of us with neuro-immune disease toward the development of post-exertional malaise.

Schutzer’s study used Fukuda which doesn’t insist on PEM, but I would hope they selected the most representative CFS patients they could find for what I understand was a very expensive study. This, in my books, would have to be those with PEM. The vast majority of Lyme sufferers don’t have PEM and I’ll assume those in the study did not. My experience suggests post-exertional malaise is a neurological thing and it wouldn’t surprise me at all if this could be detected in a brain study like this. Yes they’re different conditions; one has what I believe is a distinct neurological symptom that involves its own inflammatory signature, while the other represents a fairly specific immunological/inflammatory response to a specific pathogen. And of course there is overlap between the two.

There’s a link to the study below, complete with an illustration of the findings that’s quite striking.

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287