Mold guru, Lisa Petrison, from Paradigm Change recently posted a detailed comment that I’ve included below. I really appreciate her input and believe that her comment and my reply really help to place the work I’ve done so far on Biotoxin Journey into the larger context of recovering from Chronic Inflammatory Response Syndrome (CIRS). In short, some with CIRS will get better by following Dr. Shoemaker’s protocol alone. Others will need to include additional therapies that may include detoxing heavy metals, clearing parasites, knocking down Candida, and the like.
Nonetheless, for those with CIRS, it’s essential to first educate yourself on what it means to follow Dr. Shoemaker’s protocol well (and this will take some weeks to months of study to do) and then to try your hardest to do just that. Sure you may need additonal support along the way, but in my humble estimation, to not take on his protocol in sincere earnest is to miss out on the benefits of a well-researched path that has been proven to correct many of the major imbalances in CIRS.
Thanks as always for your work. You did a good job (in the Binder article) of presenting a lot of complex material in a systematic way
One thing that I think that we need to be considering is that it does not seem that mold toxins are the only type of toxicity of relevance for those with this type of illness. Toxicity involving heavy metals seems very important for many people, and parasite toxins seem important as well. Likely other types of toxicity, such as glyphosate and other human-made chemicals, are issues for at least some people too.
I tend to think that it’s likely that some people are just worse than others at detoxification in general, and that this causes other toxicity as well as mold toxins to be a problem. In addition, I believe pretty strongly that even if mold toxicity is at the root of the problem, the downstream effects of the mold cause detoxification channels in general to get messed up, meaning that other types of toxicity can become players.
For instance, Dr. Paul Cheney has discussed how in his patients, liver flow is impeded. He attributes that to the same issues that he believes impede cardiovascular circulation in these patients – low respiratory rate and low mitochondrial function. He thinks that those are designed to protect the system from “something worse” happening – and I think that that something worse is oxidative stress damage from trichothecene toxins, since keeping systemic oxygen levels at a low level seems to result in the oxidative stress from those toxins being much less damaging.
Insofar as liver flow is impeded, other toxicity is not going to be cleared from the body and people are going to start to become overloaded with it. And so especially if people have been sick for a long time, finding ways to help clear that downstream toxicity may be appropriate.
Based on my own experiences and what I know of the science, I do think that CSM is more effective at removing mold toxins (or at least some mold toxins) than other types of binders. But for other types of toxicity, other types of binders or chelators may be much more effective than CSM. So it really depends on what kinds of toxicity we’re dealing with, and in many cases what stage of the recovery process people are at.
I also think that we have to be careful not to make it seem that the reasbsorption of toxins passing through the liver is the only thing preventing clearance of mold toxins from occurring. For instance, in Desperation Medicine (I think in the context of ciguatoxin), Dr. Shoemaker discussed the idea that some toxins tend to get trapped in the cells and to be released very slowly over the course of many years.
My feeling is that this indeed is what happens in this disease with some of the worst mold toxins, and that the thing that releases the toxins from the cells more effectively than anything else I’ve seen so far is getting really clear through extreme avoidance (though still, it can take many years to detox this stuff enough to get a lot better).
Insofar as toxins indeed are trapped in the cells, it’s not going to matter how much CSM people take. So figuring out whether indeed this is a problem in this illness as well as how to fix it, if so, seems that it should be a priority.
From what I have seen in patients pursuing avoidance, improvements on the “mold labs” tend to be only vaguely correlated with improvements in overall wellness or reactivity levels. Therefore, the fact that Dr. Shoemaker did not note that using various binders resulted in improvements on those labs does not mean that it has been demonstrated that those binders do not have a positive effect in this illness. To my understanding, those tests are not accurate enough to demonstrate this one way or another (and certainly, there is no peer-reviewed literature showing that they are accurate enough to be used for as a proxy for wellness level).
Based on everything that I have heard from people who have made progress in this illness, CSM and binders in general should be considered just one tool in the arsenal with regard to pursuing detox. I have heard of many other techniques being cited as much more helpful in getting the toxins out – scrupulous avoidance, sweating (through exercise or otherwise), coffee enemas, homeopathy, neural therapy, chelation, methylation support, getting internal microorganisms to do the work (e.g. through fermented foods and GAPS-type diets), and others.
If one doctor had the way to get better from this illness wholly mapped out, then I would not be hearing from so many people who are willing to pursue extreme avoidance to improve their health despite having followed various doctors’ protocols to the letter for extended periods of time. This illness is just hard, and nobody has all the answers yet.
That being the case, keeping an open mind to the idea that there may be some important knowledge out there that is not already recognized as part of anybody’s current protocol seems to me important.
Thanks again for all your work.
What a treat to hear from you. As always, you make some really good points. Also, you may be surprised to hear that I totally agree with what you’re saying with perhaps a few caveats.
As it stands, I’d originally intended to cover Dr. Shoemaker’s protocol, dive into various alternative subjects like metals, dental, parasites, and so on along with then covering remediation and construction. Well, as you can imagine, this was way more work than I thought it was going to be. Add on the questions I try to answer along with needing to get back to making some money, and it became clear I needed to re-evaluate.
As such, my greatly narrowed focus is to mostly try to cover Dr. Shoemaker’s protocol along with touching on some of the more widely known alternative approaches. Please note that I realize Dr. Shoemaker’s protocol isn’t a magic-bullet and could even be considered “alternative” from some vantage points.
Having said this, I stand behind the basic premise that if a person has CIRS, then it makes good sense to really try to take on Dr. Shoemaker’s protocol wholeheartedly. If it doesn’t work, I’m all for adding on additional therapies and even discarding it all together. You make some awesome points about helping the body heal through living in a pristine place, working on heavy metals, parasites, and the like. In some ways, it’s sort of like the chicken and the egg parable. Did the person get CIRS because they were loaded up on metals, parasites, and the like, or were these simply confounders that became a problem because of CIRS? I’m all for other therapies that help heal the body.
On the other hand, getting to the point of wholeheartedly taking on all of the implications of CIRS, or any chronic illness, is a real process. Do I really have to give up bread and milk? Do I really have to carefully monitor and control for exposures from the stores and restaurants? Do I really have to discard many of my possessions and start all over? These are major challenges that are further hampered by what I perceive to be a lack of clarity in what it really means to follow Dr. Shoemaker’s protocol well.
What I mean by this is that in spite of the Surviving Mold website along with Dr. Shoemaker’s educational material and books, my impression is that a lot of folks just don’t have all the facts. For examples, if you don’t get out of a moldy environment, you can forget about binders having much of an impact. If you do get clear of mold and take Cholestyramine (CSM) but don’t change your diet and load up on fish oil, then it’s quite possible you may get an intensification reaction. If you manage to tolerate CSM but don’t knock out MARCoNS, then don’t expect much improvement in symptoms. These are the types of details that although Dr. Shoemaker covers, the information is fragmented. Being a former teacher along with having first hand experience with family and friends that suffer greatly, I felt compelled to try to organize this material. I believe that because people don’t understand what to expect, they give up too soon and miss out on significant healing.
So I think perhaps the only minor difference in view that we have is in relation to efficacy of CSM and Welchol. To my understanding, if CSM and Welchol improve VCS and lower MMP9 levels, then this is helpful to know. In other words, to the degree that we accept that VCS is lowered as a consequence of toxin removal and MMP9 is a reflection of high cytokine levels, then these seem to be a reasonable metrics. Granted, they may or may not correlate to improvement in symptoms but it’s a step in the right direction. In my experience, a person may have to travel to the very end of Dr. Shoemaker’s protocol before realizing dramatic symptoms relief. He’s said as much when it comes to dreaded haplotypes. So while I agree that there is still a lot to know about chronic illness, I really appreciate it when I can see “hard data” (especially from thousands of patients) that supports a given approach. If you take CSM or Welchol, there is a very good chance VCS and MMP9 results will improve and this is quite likely to be helpful in the long term.
To further quantify this point, it’s akin to continuing with heavy metal detox based upon labs. If I use a DMPS, DMSA, Chris Shade’s approach, or some other heavy metal detox protocol and see metals lowering, then for the most part I consider this to be a step in the right direction – even if I don’t realize symptom relief. I say this because there are all sorts of data saying metals can really mess a person up.
A step further removed, if someone tells me that parasites need to be addressed but that it’s impossible to know if I have them (in some cases), I’m less inclined to jump right in. When I do research, it’s clear that parasites are a problem but not being able to tell if I have them is a bit troubling. Perhaps I’ll buy the equipment to do my own fecal smear tests using an inexpensive hand-driven centrifuge and microscope in an attempt to see for myself if parasites are a problem.
And so it goes. Continuing down the scale, if someone else comes up to me and says that swallowing hydrogen peroxide is going to cure me, I’m still listening but this is even further out on the ledge so to speak. I’m much less inclined to take on these less grounded approaches. So granted, Dr. Shoemaker’s work is far from being totally “bolted down” but we need a way to prioritize somehow.
From what I can tell, you and I are in alignment. Dr. Shoemaker’s protocol isn’t the “final solution” when it comes to CIRS. There are other areas that will likely need to be addressed – especially if the person is going for feeling better than they’ve ever felt before. This has been an awesome exchange for me and I really feel it provides a broader picture for others. Thanks for that Lisa. I’m humbled by your efforts to bring clarity to the issues around mold.
All the best.