Published August 17, 2017
I’ve been writing for some time now trying to let you all know what I’ve learned about getting better from Biotoxin Illness, also called Chronic Inflammatory Response Syndrome (CIRS). It’s been a long and winding road. As it turns out, it’s been incredible hard patching this nearly 60-year-old body back together again. In large part, this was due to a lot of neglect and even outright abuse in my younger years. I was so clueless when it came to guarding my health. The cool fact is that I continue to learn new material and my health continues to improve.
On a related but less upbeat note, I have to admit the impetus for writing has been quite low for some time now. You may have noticed that I haven’t written for a few months. As such, I’ve decided that in order to move forward, I’m not going to hold myself to such high standards. It takes a lot of time to get all the facts straight, not to mention organizing and writing them down in a clear manner.
From now on, I’m going to “shoot from the hip” more. In many instances, I’m going to simply recall what I remember without going back and looking up literature to fill in all the details. With this in mind, below is a list of topics I’ve engaged in more-or-less since the beginning of 2017.
As you may recall, I had three upper molars extracted. One of them was done by Dr. Cook who aggressively removed a lot of surrounding bone in an attempt to ensure the infection that was found around the root-canalled tooth would clear. Unfortunately, he missed a root of the tooth and I believe this is what caused a large cavitation to form that was unsuccessfully cleaned by a different biological dentist.
Later, I had two other upper molars extracted. Again, the source of the infection came from a root-canal that had been preformed many years prior. In all three extraction sites, I recently worked with Dr. Hal Huggin’s trained cavitation dentist that I found through Huggin’s Applied Healing. Through testing he confirmed what was visually seen, that all three sites were infected.
Testing was done via swabs analyzed by DNA Connexions along with MARCoNS by Microbology DX. Out of the nine nasty bacterium tested by DNA Connexions, six of them were at very high levels. Additionally, Microbology DX found MARCoNS in the cultured sockets. These results are consistent with what has been coming out of Dr. Shoemaker’s group regarding MARCoNS hiding out in rotten jawbone.
So I’m going to save all the details about the process for another day. Basically, I followed the Dr. Hal Huggin’s protocol. Prior to surgery, this included taking supportive supplements weeks in advance, a comprehensive blood panel, testing to make sure I could tolerate the high dose vitamin C cocktail given during surgery, and a lymph message just prior to surgery. As a way of minimizing the stress of surgery, I was put under “conscious sedation” and right afterward was given deep foot massage. All of the drugs used were confirmed to be safe by BioComp Laboratory testing. Post surgery follow-up included very low dose antibiotics, supplements, and the Huggin’s heavy metal detox protocol.
I decided not to pay for a Huggins “Assist Report” wherein blood chemistry test, hair analysis, and a questionnaire are used to create a 120-page report on how to balance your chemistry. Given what I was already paying, the additional $850 didn’t seem worth it especially in light of all the effort I’ve already made in cleaning up my diet. Also, given that I own a mHBOT chamber, I did my own dives at home in lieu of paying over a thousand dollars for hard-chamber dives in a hospital setting.
If I had it to do all over again, I would have simply taken care of my body as I’ve discussed in Dental Health and just had the sites cleaned out without being “put under”. Of course, this would have included high-dose vitamin C and mHBOT along with nutritional supplementation. I know that Dr. Hal Huggin’s found that all the support I briefly laid out really helped his patients heal but I’ve learned a lot over the years about caring for this body. In my case, where I’m so much better informed and actively involved along with my direct experience, I just don’t see the need.
So are the extraction sites finally clear? I don’t know. I did realize a bit of increased energy shortly after surgery. Additionally, I’m still incrementally improving over time but how much of this is due to the surgery is unclear. I did not realize any profound increase in health as others have been lucky enough to report. Given my past experience, this is not surprising. I seem to be on the long and winding road to recovery.
In the beginning of the year, I started to have really bad muscle cramping. It got to the point where any time I contracted a muscle for more than a few seconds, it would start going into a severe contraction. It was especially bad in my legs. It got to the point that if I couldn’t find an answer soon, I’d have to go see a doctor about it. The situation was troubling.
I remember my old carpenter friend, who I’m convinced has CIRS, mentioning that his Dad used to get bad leg cramps. Within a day of putting Sublimed Sulfur Powder in his shoes, the cramping would stop. This got me thinking about how I’d written in AGA – Diet – Detox that sulfur is a key nutrient related to detoxification.
In turn, I started reading about the organic sulfur compound DMSO and its derivative MSM were effective at relieving leg cramps, joint and muscle pain, arthritis, inflammation, and so on. Now granted, ramping up detoxification should not be done “willy-nilly”. However, I’d already done quite a bit of pre-toxing followed by opening up all three phases of detoxification using higher dose vitamin C, Haritaki, and glutathione (GSH).
I started by taking one teaspoon of MSM along with molybdenum twice daily. This did help with deep sleep a bit along with a mild reduction in aches in pain. However, it may have contributed to increased fatigue and definitely made my gut hurt on both sides with occasionally sharp pains and constant butterflies. Given this, I stopped MSM and started using DMSO.
I rubbed in 12 drops of DMSO liquid to the bottom of each foot nightly. This did help but did not completely resolve the problem. Eventually, I figured it out.
I needed more salt; dah. Dave Asprey does a very nice job discussing how nearly all of us need more salt than we’re getting and that the risks have been way overblown. I take 1/4 teaspoon of Real Salt and 1/2 teaspoon of a salt substitute containing potassium chloride like NoSalt in the morning. It’s important to balance the sodium in salt with potassium.
Update September 25, 2018
With a bit more experimenting using salt and potassium, I’ve found that by supplementing with potassium alone that muscle cramps have gone away.
Note: Some folks are salt sensitive resulting in high blood pressure. In Salt and Self-Experimentation, Greg Pomerantz talks about taking blood pressure readings to test for salt sensitivity.
If you’ve been keeping up with my progress, you know that I’ve been taking VIP for many months now with no noticeable improvement. This can happen particularly for us older folks with enlarged ventricles in the brain. Nevertheless, don’t let this sway you from following protocol.
In Staying On The Path, I discuss how nearly 100% of kids and young adults under the age of 22 along with 90% of adults get better on Dr. Shoemaker’s protocol. In particular, getting “better” is defined as at least a 75% reduction in symptoms. Now granted, the data may be skewed high due to exclusion of some of the worst patients (CIRS doctors and some of the sickest patients often don’t work together long). Nevertheless, a high percentage of those suffering from CIRS simply follow protocol and get better. They don’t end up hanging out on the Internet in a meaningful effort to try and find alternative solutions.
So I felt stymied and consequently decided to have a phone consultation with Dr. Shoemaker. Wanting to make the best use of the 30 minutes, I’d carefully laid out where I was at along with posing a set of questions. These focused on possible ways to improve VIP efficacy, hypothyroidism, low cortisol, Chronic Kidney Disease, MMP9, and NeuroQuant. Naturally, I included pertinent lab work. It was quite a laundry list but nonetheless, important to me.
In typical fashion, Dr. Shoemaker quickly dismissed many of my questions with single sentence responses that basically reiterated the point that I should follow protocol. He then went on to use the remainder of the time evaluating my NeuroQuant (NQ) results from October 2015. It was a very informative discussion; I respect his focused approach when it comes to CIRS.
For those that are unfamiliar, NQ is a specialized MRI brain scan that evaluates the physical size (volume) of distinct brain regions. In the case of CIRS, 11 different regions (nuclei) are evaluated. What Dr. Shoemaker has discovered is that when those with CIRS are exposed to biotoxins, some of those nuclei will swell (edema) while other brain regions necessarily shrink (atrophy) – the skull limits the total volume so if some areas swell other areas necessarily have to shrink.
The reason why NQ is useful is because the nuclei that swell and the ones that shrink tend to do so in a particular pattern for those with CIRS compared to healthy people. Furthermore, the brain regions that swell and shrink in those with CIRS caused by mold are distinctly different than the regions that change due to Lyme biotoxins. A statistical analysis shows that it is possible to determine with a fair degree of certainty if someone is presently suffering from mold biotoxin exposure, Lyme biotoxin exposure, or both. In addition, NQ can also tell a person if they’ve successfully treated CIRS. That’s pretty cool.
Update September 25, 2018
It has come to my attention that there is a group of ISEAI doctors that have given up on using Dr. Shoemaker’s NeuroQuant scoring system both in terms of quantifying the extent of shrunken/swollen (atrophy/edema) brain regions along with determining if a person is suffering from CIRS, Lyme, or both. Reportedly, the control group used by Dr. Shoemaker was quite limited. If this is in fact the case, I can see why some ISEAI doctors are reporting that they are not getting meaningful information from NeuroQuant scores.
To understand this a little better, consider the report The NeuroQuant Normative Database – Comparing Individual Brain Structures by the folks that developed NeuroQuant, Cortech Labs. One doesn’t have to look very hard to see that the size of the various brain regions can be quite different based upon gender and especially age – see also papers like Brain Volume Changes in Normal Aging. The fact that the existing NeuroQuant scoring system doesn’t include gender and age categories seems to give credence to the claim that the control group was rather narrow.
Having said this, even if the control group was limited, this does not necessarily mean that Dr. Shoemaker’s scoring system is useless. Who knows, maybe there is enough of a difference between moldy and non-moldy brains that age and gender differences aren’t as important. In terms of Dr. Shoemaker, my understanding is that he continues to stand behind his scoring system. This is corroborated by the fact that Surviving Mold has recently launched an Online NeuroQuant Analysis.
In any case, my point is that the current scoring system may not be as accurate as once believed. Perhaps, as some ISEAI doctors have suggested, the best approach is to look to the new Triage Report by Cortech Labs as it is both age and gender referenced. Hopefully with time, data from this newer gender and age referenced report can be analized by ISEAI doctors and a better scoring system introduced.
Setting the theoretical understanding of NQ aside, those of us with CIRS are intimately familiar with the symptoms of over-bloated and concomitantly crushed brain regions. Dr. Shoemaker has specifically noted that these “executive functions” are impaired.
CIRS Brain Symptoms
- Recent memory
- Word finding
- Assimilation of new words
Having laid out the basics of NQ, what follows are the notes I took from the May 2017 phone consultation with Dr. Shoemaker. In particular, Dr. Shoemaker evaluated my NQ scan from 2015 that I’ve included here. Having improved dramatically since then, I really should make the effort to be re-scanned. Although we know that brain regions do correct using VIP, it would be informative to see where I’m at today. This is especially true given the rather dire prognosis by Dr. Shoemaker that I would likely succumb to some degree of dementia over time if brain region volumes weren’t corrected. I’ll leave it up to you all to look up where in particular each of these regions lies and what their understood functions are.
- Ventricles: I have a “differential diagnosis” of enlarged lateral ventricles. Statistically, folks with enlarged lateral ventricles often don’t see significant symptom relief using VIP. It’s important to determine that the enlargement is not due to “normal pressure hydrocephalus”. A diagnosis of normal pressure hydrocephalus is usually assigned when the lateral ventricles and fourth ventricles are swollen. Although we don’t know the size of my fourth ventricles, my inferior lateral ventricles are quite small so he said this diagnosis isn’t as probable. Instead, it more likely that there is some type of “stricture” preventing flow into the inferior lateral ventricles, or there may be a thinning of “cortical gray matter”. This “thinning” reduces the density of the remaining cortical gray matter surrounding the lateral ventricles resulting in less pressure on the ventricles. As such, the lateral ventricles expand like a balloon.
- Corticol Gray Matter: In terms of volume, my cortical gray matter is large and Dr. Shoemaker believes this is due to “interstitial edema” – swelling between the cells in the cortical gray matter. Interstitial edema causes an increase in cortical gray volume and at the same time, the cortical gray matter is less dense – “thinner”.
- Hippocampus: My hippocampus is small and this occurs in PTSD and “global gray matter nuclear atrophy”.
- Amygdala: My amygdala is normal but on the small side but is still considered normal. A small amygdala occurs in PTSD and a few other rare conditions.
- Caudate: My caudate nucleus is small. The caudate nucleus is small in 30% with Lyme disease and nearly 100% of those with mold.
- Putamen: My putamen is small. The putamen is small in nearly 100% of Lyme patients. However, the putamen can also be small if there is diffuse gray matter nuclear atrophy. A healthy putamen size is indicative of healthy cortical gray matter.
- Pallidum: My pallidum is small. The pallidum is large in the 20-40 age groups. However, in mold patients that are older, the pallidum is small. The pallidum is where Parkinson disease occurs.
- Thalamus: My thalamus is quite small. The right side of the thalamus will get quite large in those with Lyme (not the left). It is a key marker for Lyme.
- Cerebellum: My cerebellum is larger than normal. People who are hyper-flexible tend to have enlarged cerebellums. In those people with an enlarged cerebellum and hyper-flexibility, there is a markedly increased chance of an early death. Taking a look at the statistics, 20% of the population less than 61 years old has an enlarged cerebellum. In the 61-75 age group, only 5% of the population has enlarged cerebellums. This means this group has a (20% – 5%) = 15% increase in death rate after the age of 61.
- Nuclear Atrophy: I have 5 “gray matter nuclear atrophies” along with ventricle enlargement – hippocampus, caudate nucleus, putamen, pallidum, and thalamus. This is of “tremendous” concerns and is quite likely due to MARCoNS. Note: Multinuclear atrophy is the shrinking of multiple regions in the brain. The definition of nuclear: relating to, or forming a nucleus. The average number of atrophic nuclei in CIRS from mold only is about 2.34 and the average number of atrophic nuclei in CIRS from Lyme only is about 2.28 – see Dr. Shoemaker Sunday, 2015 Mold Conference.
- MARCoNS cause the most amount of nuclear atrophy. This is the “biggest threat to me” along with enlarged lateral ventricle. This may well lead to cognitive impairment. Looking a genomics, MARCoNS suppress the activation of “nuclear encoded” mitochondrial and nuclear encoded ribosomal genes. It is very important to determine if this is happening and to then take actionable steps to up-regulate activation. This requires the latest genomics ProgeneDX Testing.
- In September 2016, it became clear to Dr. Shoemaker that there were “MARCoNS Monsters” due to “horizontal gene transfer” and the use of anti-fungals. Dr. Shoemaker never used to see reoccurring MARCoNS. Dental infections are one reason and anti-fungals appear to be another. Persistent MARCoNS is often caused by the use of Amphotericin B or azole antifungals.For example, in the 1970’s and 1980’s, staph aureus went from a benign bacterium to being methicillin resistant due to the overuse of penicillin. The overuse of antibiotics caused genes in plasmid (extra-cellular DNA) to eventually code beta-lactose (enzyme that breaks down penicillin). Later, methicillin resistance developed. This is not surprising as staph is very prolific and readily shares DNA. In addition, it appears that the source of these anti-biotic resistant genes appears to be in Coagulase Negative Staph (CONS) – like MARCoNS. CONS used to be benign colonizers of the nose and skin. Hence, it may be that this same process is taking place in MARCoNS due to use of anti-fungals.
- Given the prolific nature of staphylococcus, MARCoNS can be picked up anywhere – doesn’t have to come from a dog or loved ones.
- Dr. Joe Musto from MicrobiologyDX is developing protocols that use colloidal silver for 3 months and plain EDTA for 6 months. Dr. Musto has found that some colloidal silver is contaminated – has a valence of +2 instead of +1. In addition, it was found that in some EDTA and silver combinations, the EDTA inappropriately bound to the colloidal silver. Dr. Musto has figured out a way to prevent this.
- Injecting ozone into the mandible (lower jaw) or maxilla (upper jaw). Dr. Nicholas Meyer has found that a Er:YAG laser therapy, and intraosseous ozone (injected into bone), is able to knock out MARCoNS in cavitations. It takes 2-3 rounds.
- Genomics testing provides a lot of information that is actionable. In 2016 Third Annual Conference Irvine, CA – Jimmy Ryan, PhD. Mitochondrial and Ribosomal Gene Regulation by VIP in CIRS Patients they found that suppression lead to activation of nuclear encoded mitochondrial and nuclear encoded ribosomal genes. However, in some cases the blockage remained even after clearing MARCoNS related to a “global dysfunction of regulation” related to nuclear atrophy.
- VIP from Lori Allen at Mixtures Pharmacy may not work as well as VIP from Dennis Katz at Hopkinton Drug. VIP is the only thing that is going to keep me from suffering from dementia.
- How does CIRS impact your brain?
- Physician’s Round Table 3/15/2014 Tampa, Florida – slide 23
- When Depersonalization & Derealization is not Psychological, but CIRS
Caudate Atrophy Symptoms
- Absence of executive inhibition – talk before thinking
- Atypical seizures
After that consultation, I decided to go back and do a little math to determine just how enlarged or shrunken the various NQ brain regions were. Granted, I knew from the consultation that the various regions were disproportioned, but I wondered just how badly the situation was. Some of Dr. Shoemaker’s comments were rather serious so I wanted to get a better sense of where I was at.
In the 2014 paper, Structural brain abnormalities in patients with inflammatory illness acquired following exposure to water-damaged buildings: a volumetric MRI study using NeuroQuant, Table 2 lists the left and right mean values for each of the NQ regions along with the Standard Deviation. Now granted, this data is a bit old but in reviewing the 2016 Third Annual Conference Irvine, CA – Ritchie Shoemaker, MD – Multinuclear Atrophy and NQ video, one is left with the impression that this table is fairly accurate albeit with some minor tweaks as a result of more recent and plentiful data.
Since we know the table is reasonable, it’s a simple matter to calculate just how badly each of the NQ brain regions are proportioned. For example, in looking at the table we know that the Lateral Ventricles in Controls is 0.677 (left) and 0.665 (right) with a standard deviation (SD) of about 0.24 (see Table 2). In those with CIRS, the lateral ventricles were 0.593 (left) and 0.601 (right) with a standard deviation of about 0.2. My lateral ventricles are 1.34 (left) and 1.25 (right).
Knowing this information, if we take the difference between Controls and my values and then divide by the relevant standard deviation value (σ), we get the number of standard deviations (SD) I am from the mean Control value. In particular, looking at the left lateral ventricle, ((1.34 – 0.677) / 0.24) = 2.76. My left lateral ventricle is 2.76 standard deviations (σ) larger than Controls. This same calculation can be done for right side in comparison to Controls, as well as, in comparison to the left and right side of those with CIRS.
Knowing the number of standard deviations a person is beyond both Control and CIRS folks on the left and right sides, you can get a sense for just how swollen or shrunken each brain region is. The way this works is based upon how Mean and Standard Deviation values are intentionally set up. In particular, mean and standard deviation values are set up such that 68 percent of the folks will be within one standard deviation (larger or smaller) from the mean, about 95 percent within two standard deviations (larger or smaller) from the mean, and about 99.7 percent will lie within three standard deviations.
If you want an exact percentage, you can punch numbers into a Standard Deviation Calculator. In this example, less than one percent (0.25%) of Controls have a larger left lateral ventricle than mine. (Using the same math, the left lateral ventricle is 3.74 SD larger than those with CIRS.) When you do this same math for the left and right sides in comparison to Controls and those with CIRS, it turns out my lateral ventricles are huge in comparison to both groups on both sides.
So I found it instructive to determine the number of standard deviations (σ) I was in comparison to both Controls and those with CIRS for the left and right sides of each of the NQ brain regions. Now it should be said that this is not how NQ is scored for determining if a person is suffering from CIRS due to either mold or chronic Lyme. For that, we have the spreadsheet put together by Rebecca Pope and Caleb Rudd. As noted in the spreadsheet, it was put together based upon the various snippets of information that could be gleaned about the scoring system that was developed by Dr. Shoemaker. Spreadsheet Update
Furthermore, some CIRS doctors consider the spreadsheet to be dated. Apparently, they’re finding that the newer NeuroQuant Triage Report is more telling.
When it comes to CIRS, no one test is ever definitive. Always ask questions and be your own best advocate. Education is the key.
For a time, I was contemplating writing code for an online NQ scoring system. However, it turns out the standard deviation calculations are simple enough and the NQ spreadsheet that is based upon Dr. Shoemaker’s work appears to be solid. As such, I’m going to let the above stand for my contribution relative to discussion on NeuroQuant. Note: Dr. Shoemaker did object to the spreadsheet but my interpretation of his statements was that the results really need to be interpreted by a CIRS certified doctor. I could not find fault in the actual output of the spreadsheet.
I’m sure most of you have seen my discussion on the use of nebulized povidone iodine to treat MARCoNS including the video I created. As I’ve had to treat MARCoNS no less than 5 times, I’ve naturally been trying to understand why they keep returning. From Dr. Shoemaker, MARCoNS are ubiquitous to our environment and as such, we all invariably come into contact with them all the time.
So what is it about my particular “terrain” that makes it such a habitable place for this nasty staph infection? Granted having infected root-canalled teeth wasn’t helping the situation, but I’m confident that there are plenty of folks with either rotting teeth, or conversely, perfectly healthy mouths, that similarly keep getting re-infected. So it’s wonderful that I now have a solid way of knocking out MARCoNS with minimal side-effects, but I wondered what else I could do to help them from reoccurring.
A while back, I remember trying to follow Dr. Klinghardt’s advice about re-populating the sinus cavity with healthful bacterium using probiotics. I wrote about this in Probiotic & Auto-Urine Nasal Sprays . At that time, I was never convinced that my random choice of lactobacillus acidophilus and bifidum bifidobacterium was correct. As such, you can see why I was drawn in by the information on Lacto Bacto as it relates the successful use of the Lactobacillus Sakei bacterium by simply applying Kimchi juice into the nostrils.
Personally, I’ve taken up snorting a drop or two of medium spicy cucumber kimchi juice up each nostril. I can’t say whether or not it’ll prove to keep MARCoNS at bay, but I do find all the antidotal accounts encouraging. Besides, it’s sort of invigorating snorting spicy juice. Who-hoo.
Along a different line, a kind reader, Sean, wrote in with a protocol for using colloidal silver alone to clear MARCoNS. I’ve added his excellent notes in More MARCoNS: Colloidal Silver & MARCoNS – Sean.
About 6 months back, the cataracts in my right eye really took off. I’d been monitoring the small amount of cataracts in both eyes for some time by simply looking into my microscope under strong magnification with nothing on the table. Interestingly, the shape and density of the protein globules that make up the cataract can be easily seen.
I suspect having the cornea directly over the lens on my right eye torn by a sharp stick recently while doing yard work may have been the trigger that caused substantial growth of the cataract in that eye. On the other hand, as noted in DHEA – ADH – Adrenals – Thyroid, hypothyroidism can lead to cataracts. I’m sure there are additional links to CIRS as in this rat study showing melatonin reduced the formation of cataracts. We know that CIRS commonly causes low melatonin levels.
Unfortunately, I haven’t found a remedy. I’ve tried all of the alternative eye-drops commonly discussed to no effect. For now, I’ve decided to be partially blind in that eye. I’m going to wait and try to further improve my health before contemplating surgery. In the interim, I’m taking 100mg of Bilberry extract twice daily.
For some time now, I’ve been wondering just how badly living in the woods of Wisconsin is affecting my health. I’ve written about how careful I have to be in cleaning dehumidifiers, air conditioners, and clothes washing machine combined with whitewashing the underside of our deck on a yearly basis. Depending on where we walk in the neighborhood, I can pick up strong wafts of mold. This even happens on the north side of our house after a good rain.
So I’m spending two months near the Mojave Desert in California. I’m renting a small place away from other properties that has a double roof and all concrete floors. I figured the upper metal roof under which the building rests that is intended to keep off the hot sun also helped to keep water out during the rainy season. Hence, that it would be less likely to be moldy.
When I arrived, all scented products went into double plastic bags. The owner loves fabric softener and it took a few days to discover that every piece of fabric in the place was loaded with these chemicals. I’m not particular adept so it took me about a week to realize that the chemicals in the scented soaps that I’d put inside two double seal Ziploc bags were also getting out to the degree that half the house had that sickly sweet smell. After about a week, I got all the chemical smells out.
On top of the chemicals, when I arrived I discovered that the window air conditioning units were loaded with dirt. What? You need to clean air conditioners on a regular basis? Who does that?
Unfortunately, even after cleaning off the evaporative coil on the inside, the larger of the two units started growing mold after a couple days of use due to all the crud in the drip pan. Given that someone used a bunch of caulk effectively gluing the otherwise removable core in place, I decided it wasn’t worth it to do additional cleaning.
As a side note, I’ve observed on new window A/C units that they intentionally don’t put in any drain holes anymore. I think they believe that the heat and fan action will evaporate off the water condensate. While this may be true to a degree, what you end up with is a pan of water that hardly ever dries out. I always drill in drain holes being very, very careful to miss the coil and cooling lines.
Back to the subject at hand, I ended up having to clean the entire place with QUAT and seal up the A/C units with plastic. I purchased a new, small A/C unit and fitted it into a window. Together with getting rid of chemicals and collecting all the fabric furniture into a pile that was then covered with plastic, I had made good progress.
To my surprise, I was still strongly reacting. What the heck? I was now three weeks into trying to make this place in the desert livable. Memories of being hammered in days past haunted me. I was seriously sleep deprived.
Eventually, I concluded that they must have sprayed the mattress for bed-bugs. Alternatively, it could have been mold but my system was being put into a fight-or-flight mode and this generally happens with chemical exposure. Whatever it was, I figured out that I was reacting to the mattress in spite of having put it in a zippered mattress bag upon arrival. Ugh.
I then proceeded to wrap the already bagged mattress in four layers of heavy plastic. This worked for two days and then I started reacting again. Wow, that really surprised me and also convinced me that in all likelihood zippered plastic mattress bags can’t keep bad stuff out, or in. This was not my understanding. Given this new understanding, when I get home, I plan on temporarily replacing my mattress with a non-PVC air mattress to see if it helps – even though I don’t get the sense that I’m reacting to my current mattress. After all, the mattress was in a moldy environment and there may be some low level reaction going on that I was heretofore unaware of.
As a solution to my mattress woes, I purchased an non-PVC air mattress that was recommended by fellow moldie Kim Goodwin. Having been through CIRS hell herself, Kim knows a lot about these sorts of issues. After two days airing out the blow-up mattress, it was virtually odorless.
After over three weeks of struggles, I’m finally starting to sleep soundly. Wow, this is not what I had in mind when I came out to the desert. I guess it just speaks to the difficulty in finding a good place.
Now you may be wondering, why I just didn’t go to another location? It’s because I have enough experience to sort of know what’s salvageable. When I walked into the place, it smelled off but not terrible. It had the double roof and all concrete flooring so I figured it could be cleaned. It was a risk but we all know how hard it is to find a clean place.
I have to say that I am learning a lot, albeit the hard way. As noted, mattress bags in all likelihood don’t protect those with CIRS. Also, I’ve discovered that like Dave Asprey, fabric softener is my kryptonite – as in makes Superman weak. On the drive out, I had big reactions in two out of the three hotels my wife and I stayed in. I was initially thinking it must have been mold but I now realize that it was more likely the fabric softener.
I eventually figured this out because the bedding at the clinic where I recently had a sleep study done was reeking with fabric softener. I knew chemical scents weren’t good but figured I’d just muttle through. I was wrong. Two hours into my nightly sleep, I woke up lit up – my sympathetic nervous system was in high alert. I had to munch on gabapentin all night long as I’ve learned this anti-seizure medication can calm down this sort of reaction. I needed to sleep so they could collect data!
Given that I had to return a few nights later for a follow-up titration study where they figure out the proper settings for a Positive Airway Pressure (PAP) machine, I came prepared. I took all of their bedding out of the room. I covered the mattress in plastic and then used my own bedding. I fired up a G3 Air Oasis. Poof, there was no more reaction. So my initial thinking that the reaction may have been from the swamp cooler they use on the building was wrong. Once I took care of that damn fabric softener, I was totally fine.
The other lesson I’m learning is that my house in Wisconsin is pretty damn good. A person always wonders especially because no mold test is infallible. Having been exposed to both fabric softener chemicals and moldy A/C units on this desert excursion, it’s clear to me that we’ve done a good job cleaning up our house in the land of the Cheeseheads. That’s great.
So I literally spent the first month out of two in the desert being pounded on my chemicals and mold. That’s not a very clean test. In spite of those troubles, I have to say I’m enjoying all the sun and heat. The extra 3,000 feet of altitude is most likely good for me too. We’ll see how the next month goes but I have to believe that in general living in a dryer climate at higher altitude has to be good for me. Besides, I really like being able to just turn the water hose on myself after hand washing my clothing to cool off. Nice, I’m finally not cold all the time.
Hormones & Sleep
In DHEA – ADH – Adrenals – Thyroid, I discussed hypothyroidism and adrenal fatigue in depth. Relative to this discussion, CIRS is a huge stressor and may very well be a causal agent leading to adrenal fatigue and hypothyroidism. Dr. Shoemaker suggests that those with CIRS follow protocol with the understanding that any issues with the adrenals and thyroid will likely correct along the way. I’m not as convinced but do take his recommendation to stay away from supplementation with DHEA or testosterone unless MSH is above 35 seriously. Additionally, if either DHEA or testosterone is used, I also understand that it’s important to test to make sure they aren’t being inappropriately converted to estrogen.
Not seeing a lot of improvement with VIP, I decided a couple months ago to try a low dose of Nature-Throid, a natural desiccated thyroid (NDT) medication. If memory serves, I was taking one-half of a grain twice daily. It was a small amount and yet, it didn’t go well. Within a few days, I was rather amped up during that day and wide awake at night. After about a week, I got this weird sensation like my whole world was crashing in around me. I stopped that trial.
I then tried very low doses of Dr. Wilson’s adrenal fatigue supplements – half of what is recommended in the Mild Adrenal Fatigue Protocol. Not as bad as with NDT, nonetheless the symptoms of feeling amped up and being awake at night returned. OK, so that wasn’t working well either and I stopped. It appears that my body isn’t interested in either of these more direct attempts at getting my internal fire turned up.
Now I understand that Dr. Lam has a very tailored and incremental approach that can help individuals that don’t do well with NDT or glandulars. Had Sean, the reader that wrote in about using colloidal silver to treat MARCoNS, also not informed me of the importance of learning more about sleep disorders, I may very well have went on and tried Dr. Lam’s approach.
However, once Sean got me pointed in the right direction, I set aside everything else. Sleep is that huge. So related to hormones, I’m supplementing with 5mg of ProgesterAll cream for now as my progesterone level is low. From the Stress Hormone Diagrams, we know progesterone is a precursor to cortisol and sex hormones. Recent testing has shown a nice bump up in testosterone so I’ve confirmed it’s not being inappropriately converted into estrogen.
So here’s why I elected to set aside all other open issues including adrenal and thyroid support. Based upon very detailed information that Sean sent to me and a bit of digging on my own part, it quickly became clear that I suffer from significantly disrupted sleep. I’ll get into all those details in the next couple of articles, but for now, what’s important to understand is that sleep disorders are very stressful and harmful to health. From what I’ve heard, I suspect that most with CIRS have sleep issues.
When I reflect back in time, decades ago, long before I crashed from CIRS, I had a sleep study done. I was having terrible nightmares and suffered from Sleep Paralysis – wake up but couldn’t move or speak. I’ve been shot, stabbed, and beaten thousands of times in my sleep. Eventually one learns coping skill and has some ability to alter the dream but I often wondered if the basement bedroom I slept in around the time the dreams got bad wasn’t the real driver. Maybe it was moldy. Today, the nightmares have abated but I do often wake up with my sympatric nervous system lit up and sometimes feeling like I’m a bit winded.
In fact, as I present information in the next article, you may very well begin to wonder if poor sleep quality is a pre-cursor to CIRS. It’s an interesting supposition, but what I do know for certain is that many suffer from poor sleep and that this is hugely damaging to their health. It’s so huge that I’ve put all other health pursuits on the “back burner”.
So getting back to adrenal fatigue and hypothyroidism, I have long wondered why my Reverse T3 (RT3) levels were always really high. We know that when the body is stressed, it shunts T4 into the inactive form RT3 – instead of turning it into active T3. Given that I’ve got CIRS under control, I’ve been wondering what was still stressing my body. As you probably have read, I’m digging into hormones, parasites, and heavy metals. However, upon diving into sleep disorders, it quickly became clear that it’s quite likely that it’s bad sleep that is still beating on my system and that this may very well be the hidden stressor that’s causing my high RT3 levels.
So I’m ending this article with clips I pieced together from infrared video I recently shot of myself while I was sleeping. I taped a lapel microphone right under my nose so I could hear what was going on with my breathing. In case you’re wondering, I used old equipment I had laying around so there is a fair amount of buzzing that overlays the audio. It was good enough for my purposes. What the video clearly showed me is that I am running the equivalent of a marathon in my sleep.
Now in spite of trying to emphasis the importance of looking at sleep quality, I bet there are quite a few of you out there that are thinking that you sleep well enough and that sleep isn’t a big priority. However, in just looking at the statistics for the general population, you’re likely wrong. On top of this, for those with CIRS, sleep disorders are likely even more prevalent.
I’m already anticipating that getting folks to take sleep disorders seriously will be equivalent in difficulty to trying to convince them to take CIRS seriously. You know, people’s eyes glaze over and you might as well be talking to the wall. They never do even the most basic of testing to back up their choice to ignore these very destructive medical conditions – in spite of often glaring symptoms to the contrary. If you’re suffering, please take a serious look at sleep. By the way, it’s absolutely impossible for you, or a bed partner, to know how much you’re struggling in your sleep. At a minimum, you need to set up an infrared camera like I did. Even then, this may not be sufficient (for example, micro-breathing) but I’ll leave those details for the upcoming article.
If you want to get a head start, the podcasts by Dr. Steven Park are very informative.