Staying On The Path

Forest PathUpdated August 3, 2016

Barriers to Wellness

Brick Wall

Over the years, I’ve worked with quite a few people, including family members that were either officially diagnosed, or very likely suffered from, Chronic Inflammatory Response Syndrome (CIRS). Their diagnosis was based upon blood work along with a history of exposure and a long list of symptoms. I have, in my more pragmatic way, tried to lay out for these folks the importance of making treatment of CIRS a high priority.

In Choosing A Path and Make Mold A Top Priority, I made the case that CIRS is different from many other more poorly defined chronic illnesses such as chronic Lyme, chronic fatigue syndrome (CFS), co-infections, and so on. A CIRS diagnosis relies on specific lab testing and a differential diagnosis by a trained doctor. Similarly, treatment of CIRS consists of a step-by-step protocol establish by Dr. Shoemaker with each step followed by more lab work to confirm success.

As such, the gray area for the diagnoses and treatment of CIRS is much, much smaller than many other chronic illnesses. This has a strong appeal to someone like me with an engineering background. With CIRS, you will know with a high degree of certainty that you actually have the illness and that when treated, there is a very good chance you’ll feel much better. In those articles, I argue that although it may very well be that folks with CIRS also suffer from parasites, mercury poisoning, nutrient deficiencies and the like, failing to make a diagnosis and treatment of CIRS a top priority just doesn’t make good sense.

Please note that I’m not saying that a person shouldn’t address other health issues, try alternative treatments, and the like. I’m all for it; I have looked at and addressed many other areas besides CIRS myself.

So why do a subset of people I have come into contact with either completely ignore CIRS or fail to follow through on the protocol? Why wouldn’t a person who clearly has many of the symptoms associated with CIRS make the effort to get diagnosed and follow through with treatment given the specificity of both? I’ve spent many an hour contemplating this conundrum. It can be heart breaking to watch folks limit their chances of feeling well again.

Upon reflection, I’ve decided that there are a myriad of factors that come into play related to getting better. Making the decision to engage in the process of diagnosing and treating CIRS requires that the person overcomes many barriers to wellness. For the remainder of this article, I’m going to first bolster the case for making CIRS a top priority by looking at success rates. I’ll then move on to looking at typical compliance rates followed by suggesting various factors that I believe contribute to a person deciding to not engage CIRS. For each of the factors, I’ll try to offer alternative perspectives in the hope that they might help make the case for the diagnosis and treatment of CIRS.

Shoemaker’s Protocol Success Rate

Success Rate

One point that I didn’t raise in other articles is the success rate of Dr. Shoemaker’s protocol. At about 30 minutes into Dr. Scott McMahon’s talk entitled “CIRS: Adults vs. Pediatrics” during the 2014 Mold Conference, Dr. McMahon states that when patients follow Dr. Shoemaker’s protocol, almost 100% of kids and young adults under the age of 22 get better. He goes on to say that the success rate for compliant adults over 22 years old is 90% and that “success” is defined as at least a 75% reduction in symptoms. This information can also be found in Dr. McMahon’s certification paper.

These success rates come from collecting solid data. What it says is clear. For those that have been diagnosed with CIRS by a Shoemaker doctor and are able to fulfill the steps of the protocol, the vast majority of them feel a lot better.

Related to this article, what’s interesting to note is that Dr. McMahon also states that out of 350 kids that he treated, only 150 were compliant (43%). He doesn’t say what the outcomes were for the 200 kids that weren’t compliant but I’m guessing they didn’t fair nearly as well. So the question is, why, when there is such an incredibly high success rate for those that follow the protocol, don’t more folks with CIRS follow through? I’ll begin to try to answer this question by looking at typical compliance rates.

Complexity & Compliance

Complex

In Factors Affecting Therapeutic Compliance: A review from the patient’s perspective, it was found that the compliance rate of long-term medication therapies was between 40% and 50%. Certainly, treating CIRS qualifies as a long-term therapy. Treating CIRS takes many months, or longer, and requires the use of numerous medications. From the review, it’s clear that no one likes to take drugs for any length of time regardless of whether they have CIRS or some other illness.

Furthermore, the review states that the rate of compliance was even lower at 20%–30% when a change in lifestyle was required. In the case of CIRS, many have to walk away from their house, most lose possessions, some lose their jobs, and everyone will be forever treating inadvertent exposures. I’d say that any of these qualify as a lifestyle change. In light of these statistics, Dr. McMahon’s compliance rate for kids of 150/350= 43% sounds pretty good.

CIRS is a complex illness that requires complex, long term, and sometimes demanding treatment. Regardless of what they are treating, people have a hard time sticking with long term therapies, especially ones that require changes in their lifestyle. Here are a few suggestions as to why this may be the case for those with CIRS.

Competing Viewpoints

Viewpoints

Show me another chronic illness that can be treated at a 90% success rate when patients follow a specific protocl. I don’t think it exists. That doesn’t mean that someone with a proper diagnosis of CIRS that decides instead to treat parasites, or Candida, or dental issues may recover dramatically without ever following Dr. Shoemaker’s protocol. It also doesn’t mean that every person with CIRS that follows the protocol is going to recover. We know 10% won’t. It just means that those that actually have CIRS who get through the protocol have a very good chance of feeling substantially better.

From my perspective, what these percentages point to is that Dr. Shoemaker’s protocol is a solid framework from which to build. In other words, I don’t see any issue with adding as many, and as diverse a range of complementary treatments as wanted, or needed, so long as Shoemaker’s protocol is kept at the core. I’m all for complementary treatments that can help in completing one of the protocol steps (proven by lab work), or help to improve other health aspects. However, I do believe it’s really important to have a solid conceptual framework. Otherwise, there is the temptation to try a little of this, and a little of that, while never really sticking to anything.

Unfortunately, what happens is some professionals, and well spoken persons, hold up individual experiences as proof that Shoemaker’s protocol doesn’t work or isn’t as good as some other approach. Upon hearing these opposing views, those that don’t understand the basic facts about diagnosing and treating CIRS are more easily drawn in to believing the protocol isn’t very successful. While these contradictory cases appear to be compelling on the surface, please understand that they do not in any way diminish the 90%+ success rate for those properly diagnosed with CIRS that manage to get through the protocol. Those statistics are solid.

As I’ve noted in other articles, all these individual cases really are saying is that some people that think they have mold issues, didn’t get better following some aspect of Shoemaker’s protocol. There’s really no comparison between these poorly defined cases and the rigor behind Shoemaker’s data. Nevertheless, the lure of a quick fix is very strong. I know this first hand.

When someone like Dr. Robert Rowen, whom I respect, publishes a video like Major Mold Symptoms Respond to Ozone Therapy , he’s doing the CIRS community a disservice and potentially confusing a lot of people about the most successful way of treating CIRS. In similar videos, Dr. Rowen strongly advocates the use of ozone to treat many types of illnesses. In this particular clip, a patient describes how she was unsuccessfully treated using a protocol that uses Cholestyramine (CSM) by a big name mold doctor. She goes on to state that she feels much better after just one ozone treatment with Dr. Rowen. The overall message seems to be that CSM, and those doctors that use CSM, can’t treat “mold” like ozone does.

Using this example, let’s discern what we really know. Was this woman properly diagnosed with CIRS and did she follow protocol? We don’t know. For all we know, she was being treated by one of many doctors treating “mold” that prescribes CSM but don’t follow Dr. Shoemaker’s protocol. Let’s go one step further and assume she was in fact properly diagnosed. Did she stick to the protocol? We don’t know.

Taking one more step, let’s say she was both properly diagnosed and followed protocol. Was she avoiding additional exposures? This isn’t always easy to know. Mold testing including ERMI isn’t foolproof. Without avoiding exposure, the chances of success are very small even when following Dr. Shoemaker’s protocol. We don’t know her living status.

Furthermore, even if she was following Dr. Shoemaker’s protocol, did her doctor understand all of the various alternative approaches to dealing with more difficult cases? Again, we don’t know. And finally, the fact is that even when everything is done right, 10% with CIRS won’t see dramatic improvement.

The bottom line is that we know very little about this woman’s health situation. And yet, the message seems to be that the use of ozone is better than a protocol like Dr. Shoemaker’s the uses CSM when it comes to treating CIRS. Do you see how wrong headed this is? I can tell you from my experience using ozone and reports from Dave Asprey, that ozone induces short term oxidative stress that then results in longer term increases in the very important anti-oxidants, Super-Oxide-Dismutase (SOD) and Glutathione (GSH). You feel better and brain fog clears after treatment with ozone. It’s not surprising that this woman would feel better after getting an infusion of ozonated blood. Nevertheless, this woman’s case says absolutely nothing about the efficacy of Dr. Shoemaker’s protocol.

If It’s Mold Then It’s CIRS

Apples and Oragnes

Another source of confusion comes from the fact that many people who believe they’re not feeling well due to mold lump themselves all together under the heading of what could be called “mold illness”. In fact, there are big differences between various peoples with “mold illness”. For example, one type of person under this blanket category may have been exposed to mold and later became ill without ever having had any testing done. They “know” mold made them sick. While it may seem perfectly clear to the individual that mold is the cause, in fact, causal links like this are suspect and have very little to do with CIRS.

Another person may have had alternative mold testing done such as Real Time Labs, muscle testing, and the like. Like assuming mold exposure is driving symptoms without testing, these tests have absolutely nothing to do with being properly diagnosed with CIRS. I won’t get into the very serious limitations of other types of testing except to say that if someone thinks they’ve got CIRS because their Real Time test came back high for mycotoxins, they’re just flat out wrong – see How Accurate Is RealTime Testing. CIRS is a very specific diagnosis that requires a trained physician and a goodly amount of blood work. It’s important to understand that the 90% success rate only applies to those that have had proper testing done to confirm CIRS and get through the protocol.

Lumping everyone who believes that mold, or some other biotoxins, made them ill, regardless of whether they’ve been properly diagnosed with CIRS, results in a lot of confusion. Again, CIRS is a diagnosis based upon very specific lab work in combination with working with a trained doctor. Given this, if someone says they didn’t get better on Dr. Shoemaker’s protocol, the first question is always whether they got a proper diagnosis. The second question is whether they have been compliant in treatment. If the answer to either question is no, then it should come as no surprise that the person didn’t get well. For those with a proper CIRS diagnosis, realize that you’re in a unique category that offers a lot of potential for recovery.

Finances

Money

Having CIRS is expensive. Insurance companies balk at covering labs and medications. In addition, it’s quite likely that many fabric possessions that have been exposed to mold will need to be discarded. It’s impossible to clean fabric furniture and drapery that was in a moldy building. You can read about my efforts to save a couch under Throw It Away. If you own a home instead of renting, the financial challenges can be even more overwhelming as remediation of a moldy home can run in the tens of thousands of dollars.

On top of this, many folks with CIRS slowly slide into oblivion. After a time, they can’t hold down good paying jobs. They have to cut back on hours. And quite likely, they have spent tons of time and money on incorrect diagnoses and treatments that led nowhere.

A person’s finances are often severely depleted before a proper diagnosis of CIRS is ever made. According to Dr. McMahon, it’s not uncommon for CIRS patients to have seen 10 or more doctors before finally getting a proper diagnosis. I’m sure many are like me having spent many tens of thousands on alternative therapies, after realizing conventional medicine had nothing to offer, and before getting a CIRS diagnosis.

In this financially strained situation, it’s really tempting to simply look the other way. From what I’ve seen, the financial barrier often comes into play right at the outset. Once a person gets taste of what it will take to treat CIRS, a common reaction is outright denial based upon a wide range of defensive excuses. Others that are more open to the diagnosis, but with limited finances, convince themselves that they simply don’t have the resources to address CIRS – so why even bother to look. And finally, for those that engage the process of diagnosis and treatment, if positive results aren’t relatively quick to follow, the expense of treating CIRS coupled with delayed results can bring treatment to a halt.

Money is a big issue. My advice would be to educate yourself in depth about CIRS. It’s expensive enough to do treatments or remediation once, let alone two or more times. It’s important to understand that there is very good data behind Shoemaker’s protocol. Formulate a plan and then bite off little pieces at a time while making sure you don’t get too overwhelmed. It’s all doable; it’s just a matter of coming up with a workable strategy. I remember spending days figuring out how I was going to do MARCoNS testing, and then days more before I had enough energy to make the phone call to order the kit, and so on. I worked at the pace that I could tolerate but I never lost sight of the importance of getting treated.

Chronic Stress

Stress

A lot of people would be crushed losing a job, possessions, and by having their finances depleted. On top of this, those with CIRS are really sick. They hurt all the time, have serious brain fog, and are often swamped with overwhelming emotions of fear, dread, and anxiety. If that wasn’t all bad enough, conventional medicine and many friends incorrectly believe people with CIRS are crazy, or at a minimum, just like to complain a lot. It’s really a devastating illness. The stress is beyond belief. The closest comparison that I’ve been able to come up with in terms of the stress it imposes is being physically tortured over a long period of time. It’s that bad.

In the article Immune System Controls Social Interaction, they describe how a stressed immune system causes individuals to withdrawal from society. This is actually the exact opposite of what needs to happen for CIRS patients. Sure it’s good to care for yourself and find lots of ways to nurture your frazzled psyche. However, there is a lot of work that needs to get done in order to recover. It starts with finding a mold-free place and cleaning possessions. It continues with testing, treatment, and more testing.

All along the way, there are going to be lots of interactions with various professionals. Lots of conversations and decisions need to be made. This is the exact opposite of what I see in CIRS patients. When I think about family members with CIRS, it’s as if the individual is being coated in sticky molasses that causes them to move super slow and eventually just stop. This is exactly what mold wants you to do. That is, to stop moving around so it’s easier to consume you!

Understand that stress and the physical nature of CIRS is not working in your favor. It’s perfectly “normal” to do everything really slowly. Just don’t let biotoxins win; keep moving!

Depression & Bipolar

BiPolar

Related to stress, depression is common in those with CIRS. Not being able to think well and feeling drained of energy day in and day out is naturally depressing. When it comes to a diagnosis of Bipolar, based upon conversations with Dr. Ackerley, many CIRS patients are able to dramatically reduce or even eliminate Bipolar medications after treating CIRS.

Depression is just like stress, it causes the person to slow way down. I remember putting up sticky notes everywhere because I was so out of it that I would forget the simplest of things. In part, my brain was foggy but I was also just so damned depressed that I didn’t have the energy required to ever look up and evaluate where I was at during the day.

Being Bipolar is perhaps even more troublesome. I have a relative that is all over the place. She simply can’t be bothered fussing over dealing with a complicated illness. Toss in some heavy doses of anxiety and you’ve got a person that will find it very hard to stick the protocol. Dr. Ackerley commented that those that are Bipolar are some of the hardest patients to treat but that they almost always see remarkable recoveries when they’re able to stay with the treatment protocol.

Hidden Trauma

Trauma

Any serious illness is going to really challenge a person’s belief systems. The particulars will be unique based upon the past experiences of the individual. Left unconfronted, these hidden traumas get in the way of bringing forth an enlightened spirit and renewed health. Life and its challenges is about becoming more.

Let me give you a couple of personal examples. The first relates to the loss of my little brother when I was 4 years old. I’ve carried deep sorrow and remorse over that loss. I felt like I hadn’t done enough, like I was a failure. Sure I was only four, but kids don’t know any better and assume it’s their fault.

As such, I’m forever trying to make everything alright, to love enough, to care enough, to give enough. If I don’t set boundaries, it can be really draining. As such, it’s hard for me to let go or fail. And yet, life is full of failures. CIRS patients are even more failure prone. I will never be as strong and capable as I was before CIRS. This really strikes at the core of this hidden trauma because it really brings home the fact that my ability to help is limited.

The “solution” was to step out of that entrenched belief system. I talk a bit about this under the heading “This Is” in Musings. Life is replete with a never ending stream of joys and sorrows. Deep spirituality is about putting the temporal into perspective. CIRS has taught me more than I ever could have otherwise learned about being “in the world but not of it”.

Another deep trauma relates to not being heard. My dad had a hard time in his youth. He lost a lot. At the same time, he was such a free spirit. Unfortunately, his stern German parents just couldn’t relate. The result was that he had to stuff a lot of what he felt. In turn, some of that repressed pain was levied on his kids. Traumas get passed from one generation to the next until they’re eventually solved. They’re a puzzle that gets passed on to each successive generation until it is eventually resolved.

As such, as a kid, a lot of what I had to say got dismissed. Many times the dismissal came in a physical form. Being a strong willed kid often resulted in really traumatic confrontations. Now that I’m older, I understand that those encounters were Life’s way of showing me that it can take on many forms and that the challenge before me was to learn how to embrace and rise above it all.

So I have a hard time speaking my mind about matters that are dear to me. It can feel too risky based upon experiences in my youth. Writing is easier because there is no one sitting across from me. At times, speaking my mind can feel tantamount to risking serious injury.

Related to the topic on hand, CIRS is all about not being heard. Even when you write on the subject like I do, you get stereotyped into “that guy who follows Shoemaker’s protocol”. Learning to move more in alignment with whatever is presenting itself in the moment, and learning to trust in the deeper nature of Life, has helped with speaking my piece and being OK when I’m not heard/understood.

Regardless of the nuances, CIRS is quite likely going to be challenging on some deep hidden levels. These traumas can be challenging because reactions against traumas are mostly unconscious. You have to take the time to really “be” with what’s going on. You have to be patient and develop a level of trust in yourself and what is presenting itself – in order to be able to actually look at and heal the past.

Group Think

Group

There are reasons I’m not on Facebook. Part of it has to do with the fact that it’s just a way for the government to easily collect big data on people. However, it’s also about just not wanting to hear everyone’s opinion on the best way to get better from chronic illness.

In moderation, hearing other’s views is useful. I like divergent ideas. They’re the well spring from which powerful solutions bubble up. However, I realize that I’m also taking on the hopes and fears of the person writing each opinion.

There is a lot of hidden garbage that causes each of us to blindly ignore whole swaths of viewpoints while at the same time digging into all the nuances on specific topics. About 99% of these motivating factors are never elucidated by the writer. In part, they’re unconscious to the writer and also, it would be too demanding. I believe the risk of joining any group is that people in groups necessarily tend to have the same hidden drivers. When you limit your exposure to like minded folks, you can end up with a really distorted view that nevertheless seems perfectly normal from the confined perspective of the group.

When it comes to CIRS and the focus of this article, I’m guessing there are groups that lambast Shoemaker’s protocol, or the idea that mold can damage health, or that anyone that doesn’t just “get over themselves” and get back to work is a big baby. For myself, I try to read from a divergent pool of opinions that challenge my viewpoints.

Misconceptions & Quackery

Ducks

Conventional doctors know best. A little mold won’t hurt anyone. The guy that runs QuackWatch has a balanced view and is trying to help. These are all misconceptions. Having CIRS and being exposed to a whole host of wrong headed thinking can feel like trying to navigate the oceans in a dingy.

The solution to this situation begins by trusting that what you feel is not only OK but important. After that comes a lot of hard work. You have to study. I don’t know any other way around it. If you don’t educate yourself, then whenever someone shows up with some quick-fix, or who dismisses the approach you’re taking, it’s going to be hard to stay on track.

Now I know that there are a lot of really smart and well-respected researchers, doctors, and educated laypersons with divergent views. For example, many alternative doctors don’t believe in CIRS. Even if they do, many think it’s only one of many contributing factors. Instead, they’ll say that you need to treat Candida, parasites, heavy metals, and the like. Trust me; I’m all for treating these other health concerns especially when lab work shows they’re an issue. Eventually I hope to write about my experiences addressing all these topics and more.

From where I stand, if a person wants to tackle these other health limiting factors while also treating CIRS, go for it. If they want to treat them first and then see if CIRS is still a factor, go for it. My only advice would be to not discard CIRS altogether because there is some serious data showing that it can really help those who have been properly diagnosed.

Side Effects

Side Effects

From what I’ve seen, when someone gets stung by a bad experience treating CIRS, it will almost guarantee that the person stops treatment. For example, if someone takes the biotoxin binder Cholestyramine (CSM) and it sends them into the depths of hell, that person is going to have a hard time garnering enough courage to try an alternative like Welchol – even if it is with the support of VIP nasal spray. Likewise, if someone treats the nasal staph infection called MARCoNS with BEG spray and it brings them to the point where all they want to do is throw themselves off the nearest bridge (because the anxiety induced from a messed up gut flora is that bad), it’s going to take a small miracle to get that same person to re-treat for MARCoNS should they reoccur.

In general, what I’ve seen is that once a person gets hit hard by a bad experience treating CIRS, it’s really likely they’re going to take a hard right turn and leave the protocol especially if it happens early on. You’ll hear a whole range of excuses as to why CIRS doesn’t make sense for them but the real driver is that the experience was just so bad that they simply can’t ever get close to risking having to go through that again. Believe me; I get it.

So I don’t know that I have a lot to offer up in these situations except to say that maybe if the person spends some time away and can treat other issues that build up strength, then maybe at some point the protocol can be revisited. It also speaks to the importance of educating oneself about the proper protocol, going slowly, and trying to get it right the first time around.

To give you an example, in my opinion, only a select group of people should take CSM outright – no Lyme, fairly strong, good bowels. For everyone else, I would always recommend taking high doses of fish oil and going on a no amylose diet at a minimum – see Binders. If a person is really weak, I would seriously consider going on VIP straight away, micro-dosing Welchol, and look at using GABA, DIM, and GSH as discussed in Blocked Detox. Talk to your doctor.

Go slow and realize that if treatment doesn’t work that there are usually ways around the problems that come up. Realize that in all likelihood treating CIRS is going to be really challenging. For myself, I tried to view these challenges as opportunities to grow. That way, they could be heralded in as “good news” as opposed to only being seen as setbacks. When that didn’t work, it became all about learning to let go at deeper and deeper levels.

Not Everyone Is the Same

Different

As I’ve been writing this article, I’ve been hearing Lisa Petrison in my head reminding me that I need to talk about an important assumption. Namely, all along I’ve assumed everyone with enough fortitude and alternative support can get through the Dr. Shoemaker’s protocol. In other words, by adding on VIP, lowering dosages, taking glutathione, and the like that anyone can get through the protocol. This is not the case and the implication of this is that the success rate is in fact lower than the 90% reported by Dr. McMahon.

Everyone is different and some folks have been beat up for a long time. For me, although I had frequent nightmares and mood swings beginning in my teens, I didn’t really start to fall apart until my late thirties. For others, the downward swing is much sooner, along with having any number of other complicating factors. Although the percentage of people with a CIRS diagnosis who couldn’t complete the protocol with even the best of support is unclear, I’m sure there are quite a few.

In my case, on the one hand, I was lucky. My bowels worked well and I could tolerate CSM without too much trouble. This was huge because after about 4 months, I began to notice that it was ever so slowly helping – in spite of being in a moldy house. On the not so lucky side, we’ve spent years figuring out the sources of mold in our house and remediating them. It took my wife and me to the brink many times.

Due to a lack of good information and an unwillingness to engage remediation fully the first two times around, we ended up remediating the house 3 times. Had I not had the conviction based upon lots of study and a good experience with CSM, who knows? Maybe I would have said mold testing is too suspect and thrown CIRS out the window. It’s possible.

Having said this, I can tell you that in my experience, all of the people that I’ve worked with that have stopped treatment have done so well before the limits of the protocol were exhausted for any number of the reasons already mentioned. The truth is we’ll probably never know what percentage of people are just too weak, or have too many complicating factors, that would prevent them from following the protocol regardless of the level of support. All I can tell you, and the entire purpose for this article, is that for those that can figure out how to circumnavigate all of the barriers to compliance mentioned, there is a very good chance they’ll get a lot better. That’s a statistic worth paying attention to.

Hard Data Fan

Data

I want to close by making it clear I’m not a Shoemaker fan per say. Rather, I’m mostly a fan of hard data. If I’m sitting around thinking how great it would be if I were dead, as I was roughly 5 years ago, and someone comes along with strong data showing there is a very good chance they can significantly help me, I pay attention. That’s it. That’s the extent of my love affair with Dr. Shoemaker’s protocol. I’ve limited the scope of the site up until now by design. Of course I’m deeply appreciative of Dr. Shoemaker for figuring out how to help me, but by no means do I think he has the total answer.

For many, including myself, it is just one solid piece in a bigger puzzle. For me, I know dental issues and heavy metals are a concern. Just last week I spun down a fecal sample and put it under the microscope and it looks like I may have parasites. There’s more to mine and many others health journey than just CIRS.

So I’m sort of near the end of my Shoemaker saga. I’m taking 6 hits of VIP daily and I’m very slowly feeling better and better. A couple of days ago I spent over 2 hours in a dairy barn learning more about stray voltage. Yes, barns are really moldy. Amazingly, I didn’t feel bad the following day. So I think I’m coming to the place where I’ve realized all there is to be had with Shoemaker’s protocol and I’m now looking toward figuring out additional puzzle pieces and gaining additional health.

Update August 3, 2016

Lisa Petrison On Compliance and Skewed Data

Paradigm Change Logo

Lisa Petrison, from Paradigm Change sent a very instructive comment that I decided to incorporate into this article. As always, I really appreciate and respect the insight she has to offer.


Greg,

I have a real problem with the word “compliant,” in the context that Dr. McMahon appears to be using it.

Lisa Petrison

Here is the definition of the word compliant, from the online Merriam-Webster dictionary:

>willing to do whatever you are asked or ordered to do : ready and willing to comply

Thus, what the use of that word seems to be suggesting is that those patients who did not continue on through the program were being uncooperative and disrespectful of the doctor’s expertise, and that the reason that they didn’t get better was their own fault.

That, however, is not what I have seen in patients who have been able to see one of the Shoemaker doctors. The issue that I much more see is that these people desperately want to get well and then force themselves to keep taking the drugs that the Shoemaker physicians recommend, even though they become terribly sick as a result. (And then, in some cases, if they cannot tolerate the drugs, the doctors boot them out of their practices after their having spent thousands of dollars without having been helped at all.)

I do not see that as being “non-compliant.” I see that as “unable to tolerate the Shoemaker protocol.” Which is something wholly different.

Apparently because I have focused my own attention on severely ill ME/CFS patients, I come across these individuals quite frequently (as does Dr. Neil Nathan, according to his newly published book, Mold and Mycotoxins: Current Evaluation and Treatment).

For instance, recently I did a poll in the Mold Avoiders group, looking at members’ experiences with cholestyramine. Approximately 1/3 of those who said that they had tried cholestyramine said that they either were unable to tolerate it at all or were able to tolerate it only after pursuing much more rigorous mold avoidance than the Shoemaker protocol suggests (e.g. at the level of avoidance of a tent with all new possessions in Death Valley or a similarly pristine location).

Here is a link to the archived poll. Note that forum membership is required to read material archived.

Now, what you are suggesting in this article is that maybe there are some people who are not going to be able to tolerate the drugs in the Shoemaker protocol at all, and that this is too bad for them, because if they could tolerate the drugs, then they would get better to the same extent that the other people got better.

But that is not a fair assessment of the situation.

Rather, let’s say (as I believe is actually the case) that there are two quite different groups of patients – a less severe group that usually can tolerate CSM and a more severe group that very often cannot tolerate it.

In that case, all the Shoemaker research with the so-called “compliant” patients will have disproportionately consisted of the less severe patients, with the more severe patients by and large systematically excluded.

If that is the case, then it is not appropriate from a methodological point of view to attempt to generalize from the first group (less sick people) to a totally different group (more sick people).

I point this out because this is perhaps the largest thing that was wrong with the PACE studies done in the UK with regard to ME/CFS. In that case, housebound and bedridden patients were systematically excluded because they were unable to get to the hospital for regular consultations.

And that being the case, it is wholly inappropriate to use the purported findings from the study (e.g. that walking on a regular basis is helpful and not harmful for mildly ill patients) and then to generalize those findings to a group of patients who didn’t even participate in the study (i.e. that if you could force the bedridden people with a cattle prod to get off their butts and start walking, that they would get better).

(Of course, this is not all that is wrong with that PACE study. It is a good bit of what was wrong though.)

Maybe what is the case is that people who are sick enough that they are unable to tolerate CSM have different core things wrong with them than the people who can tolerate CSM. And therefore, that even if you could get them to be able to tolerate CSM (as you likely could if you could get them into a tent in Death Valley, using Erik’s avoidance protocols), it would not help them nearly as much as it helps the people who are less sick and able to tolerate it without any problems. Because, say, maybe the sicker patients have more pathogens or more metals or something else that is different and that needs to be addressed directly, if they are going to get better.

From a research methodology standpoint, these are really, really big holes.

Now, I am sympathetic to the fact that the Shoemaker doctors do not have very big research budgets. I understand that the work they are doing is not going to be free of holes, for that reason.

But the papers such as the ones that you are referring to way overstep the bounds of acceptable research practices, in terms of their generalizing results obtained in one group of patients to an entirely different group of patients.

That is not okay when Simon Wessely and colleagues do it. As is being made clear, in the extent to which the flaws in their papers are finally coming to light.

And despite the fact that I am grateful to the Dr. Shoemaker and his colleagues for the general work that they are doing with regard to the mold, from a professional research standpoint, it is not okay when they do it either.

So that being the case, they need to start being more circumspect in terms of their assertions.


Lisa,

It’s always a treat for me when you show up to comment on material I’ve written. You always bring up some really important points related to the topic on hand. In Buddhism, energy comes in many forms including wrathful deities that when needed, swoop down to clear away obfuscation and protect the innocent. You’re like that to me; being so fierce in the way you protect those that suffer the most and also in your support of the vital understanding that avoidance is super important. It’s really beautiful and inspiring to see such passion. Thank you.

Regarding the definition you gave for the word compliance, you’re right. I’m in complete agreement that use of that definition in the context of treating CIRS is inappropriate and I can see how others could take offense. Also, I totally get that some folks do try to follow protocol to bad effect. Being dismissed by doctors that don’t know how to work with more sensitive patients is even more hurtful.

After thinking about your comment, I realized that I was working under a different definition of the word and hadn’t made that very clear. I’d like to suggest an alternative definition that is more in alignment with the way that I view the word in the context of treating CIRS. From several online dictionaries, compliant can also mean “manufactured or produced in accordance with a specified body of rules (usu. used in combination): Energy Star-compliant computers.”

If we look into this definition a bit, being Energy Star compliant means meeting standards like costing 20% less to operate than some minimum standard. Of note is the fact that the Energy Star standard, for the most part, doesn’t actually dictate how companies manage to be in compliance, only that they meet the minimal standards. This is how I view the word compliance in terms of treating CIRS.

For example, one step of the protocol is to treat MARCoNS. I’ve heard of folks that have met this standard, been in compliance, using iodine, herbals, colloidal silver, and the like. If they confirm eradication by testing, I consider this as being in compliance. It doesn’t matter if they used BEG spray or not, only that MARCoNS are gone.

A trickier step that seems like a lot of people get stuck on is taking Cholesyramine (CSM) or Welchol. From my understanding, to be in “compliance” with this steps means figuring out some way to at least be taking 2 tablets of Welchol 3 times daily. For some, this may be adding on all sorts of additional support including the use of low doses of VIP and going incredibly slow. It also will likely include getting really serious about avoidance as you rightly stress. I’m guessing you and the folks in Groups know lots of other ways to help prop up more sensitive individuals than I do.

Switching focus, I agree that there is most certainly a subset of CIRS patients that, even if they were able to get through the steps of the protocol, won’t feel significantly better. Dr. McMahon says this works out to 10% of patients but as I tried to point out in Not Everyone Is the Same, this number would definitely higher if you included folks that were given lots of support and still couldn’t accomplish the steps. How much higher is uncertain. In the context of this article, I don’t know that it really matters. However, these people exist and your point about the importance of trying to make sure data reflects this fact is a really good one. I mean really good.

So there are a myriad of factors that influence what path a person ends up taking back to wellness. I’ve tried to elucidate some of them related to CIRS. You’ve pointed out some others. Namely, bad experiences with treating physicians, what constitutes good data, and the fact that there may be some other driver that causes the same biological response as CIRS and yet isn’t CIRS – it looks like CIRS but treatment is much different.

I want to close with a discussion I had with my wife over breakfast the other morning. I commented about how you’d written in with concerns. We also talked about how there was a fair amount of disagreement about the treatment of CIRS. She immediately admonished me for not responding right away and reminded me that it’s important for me to really listen and communicate. This reminded me of a concept in Buddhism wherein confrontation is heralded in as good news. From this perspective, when someone is upset, it’s viewed as an opportunity to uncover important and precious hidden material. Anger is seen as a vital messenger that deserves respect.

So when I hear that folks are getting into it, this is actually a promising situation. It’s promising because if they didn’t care, they’d just walk away and nothing would change. However, they do care and that’s why the exchange happens. It’s beautiful. The key for me when situations get heated is really trying to put myself in the other person’s situation, to really hear, to really feel. After that, comes reflection. It takes time for entrenched energy patterns to shift. With enough patience and sincerity, intuition has a chance to speak. When it does, the message is often both surprising, delightful, and profound.

Update End

24 thoughts on “Staying On The Path

  1. Interesting what you say about not being heard. That is probably my primary issue, emotionally. AND, I recently realized that when I’m exposed to mold, my throat closes up making it hard to speak ( or sing). Funny how that can work.

    Nice to hear of your successes, thanks for all the good info!

    • Sort of along the same line, I was told about the importance of the diaphragm in relation to repressed feelings by a Chinese Medicine doctor and a gifted healer. Although it varies, I frequently experience a tightness in my upper abdomen. It’s instructive to notice how my habit was to sit slouched over, to compress the diaphragm. I’m working on being more mindful of my posture and of breathing deeply into my lower belly rather than up into my chest. The feeling I get from doing this is empowering and nurturing.

  2. I really appreciated your writings today. I can relate on so many levels. Thank you. I have CIRS proven by labs, MRI-NQ, genetics 11-3-52b, exposure & 27 symptoms. Been on CSM over 1 yr, moved, lost every porous keepsake, and then some, my income, my job, 401K, my former intelligent self. I was sure i had Candida or Parasites, so started PauDarco tea, diatomaceous earth, montmorillian clay and activated charcoal, AND GAPS diet….yes, i had worms and “stuff” coming out 7 weeks!!! I have never felt so suicidal in all my life! I have applied for disability, assistance, food stamps…I graduated as Valedictorian…. also have MCS. I cook all food from scratch -for years, organic, no packaged foods, high dose fish oil, resveratrol, etc trying to fix me…its humbling to say the least. Finally started VIP 3 weeks ago (2 week trial). Final symptoms were disappearing quickly. I almost felt like a shadow of my old self… but Hopkinton drug can no longer ship VIP to NC. After 2 weeks of practically NO symptoms, and my brain slightly coming back…(i still cant add or subtract or play card games).

    • VIP is often important for dreaded genotypes. Healing brain inflammation using VIP can take many months.

      It’s crazy that VIP isn’t available in all states. Unfortunately, last I heard, Hopkinton was the only place that compounded it. Maybe ask at Mold Avoiders to confirm this.

    • Susan,
      Caleb from Toxic Mould Support Australia wrote to me with some additional information about where to get VIP. He wrote, “VIP is available at two other pharmacies in the USA (Mixtures, Remedies) as freeze dried capsules that the patient mixes up at home, I’ve attached the info file that a member, Rebecca, uploaded. It’s not exactly the same formula as Hopkinton. There are two pharmacies in Australia that sell it too, one Your Solutions, consulted with Hopkinton over the formula. The other did not.” Thanks Rebecca and Caleb!

    • Lab work to diagnose and lab work to treat CIRS are different. For diagnosis, see Diagnosing Biotoxin Illness Using Labwork. For treatment, it’s a longer list. Some of the labs that were done in order to diagnose and determine a treatment protocol by Dr. Shoemaker were HLA DR (genes), MSH, VIP, Leptin, AGA, ADH and Osmolality, ACTH, Cortisol, DHEA, Testosterone, Estradiol, CRP, C3a/C4a, TGF-beta1, MMP9, MARCoNS, Vitamin D, and others. Labs for treatment will vary depending on the doctor, symptoms, and finances.

  3. Thanks for this excellent post. Love the tapeworm comment. People often say I eat so much that there must be a tapeworm in there somewhere. Maybe!

    Finances are a major issue, glad you brought it up. What are good options when your savings runs out and you can’t work, but the treatment and lifestyle must be maintained in order for you to regain your health? Loaded question, I know.

    I hear you on the re-treating with BEG. It’s so hard to step back into that boxing ring again! It takes the_utmost_discipline and courage. My MARCoNS came back after 7 months on VIP. I was progressing slowly, as expected, but it was suggested by Dr Ackerley that I re-test MARCoNS. My heart sank when the same three resistant items re-appeared. In December I had treated with BEG for a month and that did the trick. In Jan and again in Feb, I was in the clear.

    Having it “come back” led me to think that I should be re-testing much more often, maybe monthly. It seems VIP would be much, much less effective if your MARCoNS is unknowingly rearing its ugly little head? Curious about your thoughts on test frequency, to make sure you are keeping things at bay. And also the accuracy of self testing vs in a doc office. I really get in there when self swabbing (your video was helpful), but some folks saying doing it in an office is better. I like to avoid offices as much as possible due to the cost and potential mold hit!

    • Hi Chris,

      Regarding finances, I feel really lucky my wife is able to work. Otherwise, it’d be really tough. Although it’s not talked about much, I believe both diagnosis and treatment can be stripped down to a bare minimum. For examples, you really only need 4 labs to make a diagnosis of CIRS – see Biotoxin Illness Diagnosis Based Upon Lab Work. A person could select those labs that are most inexpensive and have the highest probability of coming back positive based upon statistics and the person’s symptoms.

      For treatment, it’s critical to find a clean place and bed to sleep on. A lot of other possessions can be jettisoned or stored. The sooner this decision is made, the less costly overall. Also, in terms of treatment, CSM/Welchol-BEG-VIP are essential but many of the other steps can be accomplished otherwise, or can be skipped under the assumption that VIP will take care of them. For me, a change in diet and anti-inflammatory supplements like turmeric brought down markers like MMP9 and TGFB1 confirmed by follow-up labs so I went straight to VIP.

      Having said this, finances are a real issue. That’s why I’ve been spraying and washing all manner of remedies through my nose in an effort to find a cheap way to treat MARCoNS. It’s why I continue to try and write on the subject of CIRS even though I have some serious time constraints.

      Regarding MARCoNS, look at supporting your gut on BEG spray. Everyone is different but I’ve heard Florastor can be helpful for some. VIP is definitely less effective when MARCoNS are present. In fact, elimination of MARCoNS is typically considered one of the pre-requests for taking VIP.

      From my own personal experience, I’d say MARCoNS can come back in as little as 2-3 months. Testing isn’t super expensive, so I could see looking for re-colonization more often especially if a person has a history of re-infection. As far as swabbing goes, if you get back to the nasophyranx for 5 seconds or longer, I don’t know why sampling at home versus the doctor’s office would be any different in terms of results.

      • Thanks for the info!

        As far as a clean place, that is a super important point and so hard to find for many. I’m contemplating moving from an older home to a large apartment complex built in 2015 but am not sure it is the best idea. Lots of factors to consider. “Newer” may not be “better”.

        Would I need to use a new bottle of xlear once MARCoNS is gone… can an older bottle be problematic due to contamination of some sort during the MARCoNS eradication phase? It seems to help soothe the sinuses.

        Is there any benefit to the newer 100 dollar Biofilm test that Microbiology dx offers in addition to the standard MARCoNS test?

        Ideas to help:
        Clomid. It has raised my testosterone from the 100s to the 600s, and is quite cheap. I didn’t try DHEA/HCG. Low T is no bueno.

        And for those with sleep issues, Power Off supplement has been a godsend.

        I created this quick entry point for folks learning about CIRS. It’s a google document and the most recent version will always be here:

        http://tinyurl.com/moldcirs101

        Maybe it could help folks you come across.

        • Chris,

          One of the points that really struck me as I was researching about alternative treatments for MARCoNS is how easily staph infections can be spread. Personally, I wouldn’t continue with bottles that I’d used while infected. At a minimum wipe it down with alcohol or something similar.

          Regarding the biofilm test, I don’t know that it’d be useful except in those cases that came back positive for CoNS but not multiple resistances. In that case, the presence of a biofilm would confirm the need for BEG. This is talked about in MARCoNS Test Results.

          Thanks for all the useful tips. I changed the link on the Home page to point to your 101 document.

          • Ah, I wasn’t sure if something in the deep sinus area could somehow taint the sprayer bottle tip or contents….

            Hmm. Maybe it’s good to clean the tips of the BEG and VIP bottles with alcohol after each use, in addition to any xlear etc a person may use. Interesting thought. I will probably start doing this.

            Hopefully I can resume surfing, that’s a real nasal flush!!!

  4. You talk about getting moments of peace in your blog after 6 months. How in the world did you stick with it? I have a similar picture. Everyday is agony. Mind hell. I’ve been taking CSM at 1/4 the dose for over a month and it has helped slightly. Not enough to function on my own. Did you take VIP? Did it help? How did you remain compliant without losing hope?

    • Those are great questions. Let me start with the easy one. I did not take VIP early. In part, I didn’t know this was an option at the time. Also, I was able to tolerate CSM and my biggest issue was remediating our home.

      An interesting question to ask is if I had known VIP was an option, would I have tried it? The answer is probably not because I was in a moldy environment and had trouble clearing MARCoNS. Both of these will likely make VIP much less effective. Also, I wanted to maximize the potential of VIP by improving as many other biomarkers as possible first. Note: I’m not saying that those that are having a hard time shouldn’t consider VIP. They should.

      I used four strategies when it was really bad. The first was study, study, study. It kept my mind off all the craziness. Second, from my studies, I tried other therapies that had low risk and a high reward potential. It kept my hopes up and some of them actually helped – diet, improving sleep, ozone, etc.

      Third, when possible, I’d use some form of prayer/meditation. Fourth, when it was really bad, I had to learn to let go on really deep levels. I used to think that being detached was bad but now I realize that there is a much deeper aspect to my being. Deeply letting go of life’s trials and tribulations brings this aspect into better focus. I’m not this body. I’m not this mind. The rest is for you to discover…

      Wishing you all the best.

      • So you have gotten your health back without finishing all the steps of the shoemaker protocol? Did you do any other steps after changing diet? You strongly advocate for the protocol and I am wondering how your markers went down? Was it just time and CSM? What adjunctive therapies possibly helped your body and brain/mind state?

        Also my last curiousity… Did you have lyme? I thought you mentioned it. At what point did you treat that? How was that a part of the CIRS picture for you?

        Thanks for your time.

        • I went through the protocol but as noted in this Reply, some steps can be skipped and some can be left for VIP to handle. You can also look at TGF beta 1 – Mold – Turmeric and Alternative Mold Therapies.

          Regarding Lyme, different tests showed different bands but I never met the CDC’s definition. Nevertheless, I was treated with antibiotics for a few months. I can’t say Lyme was ever part of my CIRS picture. I was treating for Lyme before learning about CIRS. A relatively recent NeuroQuant brain scan does not show Lyme as a factor. This combined with the fact that I didn’t react to CSM makes me think that Lyme wasn’t an issue for me.

  5. I am one of the ones that you would call “noncompliant” I found out four months in treatment and taking the CSM as directed even though It felt like it was frying my brain that I have Lyme and I believe blocked pathways. I was not noncompliant. I spent a lot of money to be dropped by the doctor when I was perceived as a difficult patient because I called her when I started having issues that were related to the treatment. I desperately want to get better. I am still trying. So you know how to contact Chris Shade? Can I be tested for blocked pathways and the brain being overexcited?

    • Hi Charleah,

      I’m sorry to hear you’re still struggling and that it didn’t work out with your last doctor. We’ve talked before and I’m glad to hear you’re getting professional direction as it’s really important to diagnose and treat CIRS correctly. Having Lyme would explain your bad reaction to CSM. You’ll definitely want to treat Lyme before treating for CIRS. When treating for CIRS, you’ll need to take extra precautions for Lyme – see Side Effects & Complications.

      I get what you mean about compliance. Lisa Petrison and I had a recent discussion on the topic.

      I’ve studied some of Chris Shade’s material but I don’t know how to contact him other than through the QuickSilver Scientific website. Chris has given talks on blocked pathways and being overexcited but as far as I know, QuickSilver Scientific only offers metals testing.

  6. Wow. What great timing. I really needed this article. Everything you wrote is what I’m feeling and experiencing. I had a horrific experience with CSM, so I’ve given up and am stuck on step 3. I’m MUCH sicker after dabbling with CSM than I was before, yet I can’t take it to clear out the overload of toxins my body released. I’m now scared to take anything and feel hopeless and stuck. ? This article gave me a little umph to try again. VIP is next. Pray for me. ?

    • Debra,
      I am praying for you. With VIP, realize you can dilute it down to between 1/10th to 1/100th initially. Also, you may want to add on additional support for your ECM and use calming supplements like GABA and L-Theanine as mentioned in Blocked Detox. After taking VIP for a while, when you decide to bring a binder on board, I’d look at taking slivers of Welchol and very slowly work up from there. I would also look at being on a no-amylose diet (or better) and high dose fish oil for at least a month prior along with using anti-inflammatory supplements. Also, it’s really important you’re in a clean place.

      I respect Dr. Ackerley and I bet she’s got even better suggestions. Also, know that Lyme can cause the type of reaction you had so maybe a NeuroQuant makes sense to try to discern if Lyme is an issue. Above all, my recommendation would be to not push too hard. I personally would rather have a protocol take many months opposed to risking being sent back to hell. My constitution simply can’t afford more really bad experiences. May the Lord bless you and keep you, may his face shine upon you and be gracious unto you…

  7. Hi Greg,

    That is some excellent writing. On your home page you write, “Conventional medicine has failed us. If we don’t help each other, where does that leave us?”

    Just out of curiosity, I’m wondering if you have ever asked anyone why and how Conventional medicine has failed us. Dr. Shoemaker knows much of the answer to those questions. So does Scott McMahon.

  8. Greg,
    You are quite knowledgeable on labs and ranges of those labs. The labs that confirmed my CIRS diagnosis were TGFbeta1 14380. C4a 4574 VIP 17 MMP9 555.
    I am trying to work with my PCP since my Shoemaker Doctor fired me. He has agreed to order the VIP that does allow me to sleep. I am currently ordering 4 pumps a day but you said you use 6. I am wondering what determines the amount and if this is something I will always need. Also the c4a is from Jewish National Health. Is this a test that can be ordered through quest without going through JNH. I doubt my PCP will have the ability to do that. She since these were the only labs that were out of range. Should that be the only ones monitored for CIRS. I have been disabled with fibro and CFS for 12 years and know I have many other health issues that no local doctors have answers for, like you in my quest for wellness I am looking for other sources.
    Thanks,
    Charleah

    • Hi Charleah,

      Those are good questions. Here’s what I know.

      1. See C4a Inflammatory Marker. C4a is more easily done through Quest. When done through LabCorp, it needs to go through the National Jewish Medical and Research Center Laboratory in Denver. Personally, I tracked TGFB1 with the use of VIP. Not only can TGFB1 be done through both Quest and LabCorp, if you see a rise, it’s indicative of continued mold or Lyme exposure.

      2. Regarding Lyme, you may want to take a look at Lyme & Co-Infections.

      3. As far as what labs to monitor, I suppose it depends on finances, symptoms, the step being addressed, and such. For myself, once I saw MMP9 tracked with TGFB1 and C4a based upon lab work and symptoms, I continued to monitor TGFB1 only. I’m sure everyone is different, but I do think this type of decision on eliminating some lab work makes sense for some.

      4. Sleep is huge. You may want to look into GABA, Glycine, Seriphos, L-theanine, and Melatonin as mentioned in Healthy Sleep Formula. Glycine can also help raise VIP naturally and is important given that Round-Up mimics this important amino acid.

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