April 29, 2018
Since My Last Post
If you read at the end of my last post, my hypersensitivity to mold has gone away. I still react in the form of brain fog, irritability, and fatigue when badly exposed but this abates by the next day. Smaller exposures don’t really have much impact. Personally, I attribute this in part to all the work I’ve done to get away from mold, clear MARCoNS, reduce inflammation, and improve my diet and sleep. However, if I had to guess, I say that it was mindfully practicing nasal breathing that helped the most with over reacting.
As mentioned in Sleep Treatment and discussed in the Buteyko Method, breathing through your nose is calming. I now make a concerted effort to keep my lips sealed and my tongue on the roof of my mouth throughout the day, I’m especially vigilant when I know I’m being exposed. This has the effect of slowing down all the mental gyrations that the toxins elicit and also sends a signal to my body that everything is going to be OK.
With my improved health, I’ve started working in earnest on rebuilding a website I made almost two decades ago. I anticipate spending at least 1,000 hours to get it rebuilt. So far, I’ve written and reviewed about 7,000 lines of code and anticipate double this amount before I’m done – not to mention all the text editing that has to be done. It’s a big task but I feel up to it and I’m actually enjoying the process – for the most part 😉
Nevertheless, I have been thinking about you all and felt like I should take a few days to let you know what I’ve been up to related to CIRS. This is going to have to be somewhat abbreviated version as I just don’t want to step away too long from all the coding I need to do. It’s important to me to get this site rebuilt so I can start making some cash and hopefully give my loving wife a bit of a respite.
Although I’m much improved, I am by no means symptom free. I wish I had more energy than I do. While I generally walk a few miles a day along with some mild weight training a few times a week, I’m still not as strong as I’d like to be. One of the issues that continues to wear on me is getting good sleep. The use of PAP therapy has definitely helped as is confirmed by the Apnoea–Hypopnoea Index (AHI) scores recorded by the PAP machine, but also in terms of not waking up short of breath and anxious. In addition, I can now sleep partially on my back without issue and this gives needed relief to my beleaguered hip and elbow joints that were not particularly happy with me always sleeping on my sides.
As discussed previously, low MSH causes insomnia due to reduced melatonin production. Although I continue to take VIP, albeit at a reduced rate, my MSH levels are very low. For me, VIP has not been the “God send” that it is for many.
Chronic illness doctors like Dr. Raj Patel seem to think this is due to having other hidden infections. This may very well be the case. I just got the results back from an Epstein Barr Virus Panel and it was overwhelmingly positive. So there is more work to done in terms of my health and I’ll write about Epstein Barr Virus (EBV) in an upcoming article.
Getting back to sleep, I tend to wake up a half-dozen times through out the night. I attribute a big part of this to low melatonin, but I also just get too uncomfortable in any one position after a time. Once again, I have low MSH levels to thank for this. In addition, around half way through the night, I tend to wake wide up as if it were morning. My approach has been to get up and have a cup of chamomile tea, stretch, and jot down any pressing thoughts – folks with CIRS tend to fixate a bit. About an hour or so later, I generally fall back to sleep but often only with the help of very deep meditative practices. Obviously, this isn’t the best of situations.
I like to keep the lights off to prevent exposure to blue light. Instead I use an inexpensive mini barrel flashight that I’ve modified using discarded plastic pill bottles – the ones with the orange tint. I cut the round bottom out of one so that I could press fit it over the existing clear lens. A couple drops of superglue at the edge holds it in place. I then found a second bottle just the right size so that when I cut it in half, I could press fit the flashlight into the bottom half. There is a 1/4″ gap at the bottom so I can set the flashlight nose down on the counter and have just enough light to make my tea.
Given my current struggles, I’ve been looking for ways of improving my sleep and this is what I’ve come up with. First, I recently re-watched Dr. Sonia Rappaport’s videos entitled, “Mold & Other Biotoxin Illnesses: The Hidden Pandemic” that you can now watch on the Education page of the new International Society for Environmentally Acquired Illness (ISEAI) website. At 39:40 of the second video, she mentions the use of Phosphatidylserine in situations like I’ve just describe. While I found the use of phosphatidylserine to be limited in my case, it’s definitely worth a try based upon what other CIRS doctors have found.
Second, I heard from a Reader that Dr. Mary Ackerley recommends Kavinace PM for folks that wake up part way through the night. I gave it a try and the Kavinace PM worked well for me. I still woke up but there was plenty of “sleep pressure” that enabled me to fall back asleep soon after. Sweet. Unfortunately, it sounds like a person acclimatizes to the supplement fairly quickly requiring higher and higher doses. Note: Kavinace PM is sort of expensive, but if you buy the larger 120 capsule bottle, the cost per capsule isn’t terrible – about 50 cents.
So I’m happy that I’ve now got Kavinace PM in my “back pocket” when I need it. In addition to Kavinace PM, you may have read that I have had some success using the latest Steve Gibson’s Healthy Sleep Formula (HSF). The addition of Niacinamide helped me sleep longer and I find Oleamide to be calming.
When I get a really bad reaction, my fall back is a very small dose of between 50-100mg of gabapentin. I get Gabapentin by prescription; it’s easy enough to get a script for sleep meds. It looks like it’s also available at All Day Chemist. And finally, sometimes I use a half a tablet of naproxen sodium (Aleeve) to help take the edge off the body aches and get a decent night’s sleep. Not wanting to lose any one of these approaches due to overuse, I rotate through them on an as-needed-basis; I need help one or two nights a week.
So this brings me to what may sound like a trivial solution that has been really amazing for me – taking snippets of melatonin throughout the night. In the past, I’d take anywhere from 2-7mg of timed release melatonin at bedtime and then another 5mg of fast acting melatonin when I’d wake up in the middle of the night. Unfortunately, regardless of the amounts I’d take, the pattern of waking in the middle of the night and not easily being able to fall back asleep remained.
Finally, it dawned on me that I should try to better mimic what my body would naturally do. So now I take 5mg of timed release before bed and then little snippets of the fast acting melatonin the half-a-dozen times that I wake to roll over. It’s easy to snap off a little chunk from the soft fast acting tablets that I keep nearby on a night stand.
In particular, I’ll take about 2mg snippets during the first four hours and then reduce the amount to 1mg for the last four hours of sleep. Although I still wake up to roll over, there is plenty of sleep pressure that I can fall right back asleep. Awesome. It’s unfortunate that I have to rely on melatonin like this but I just don’t see a way around it until I can figure out what’s keeping MSH so depressed. Sleep is critical.
MARCoNS & VIP
Getting back to CIRS, my latest MARCoNS test came back negative. Hurray! Dr. Shoemaker commented that my unusually disproportioned brain regions, as seen in a NeuroQuant Scan, is very likely due to MARCoNS. I’m happy to see they’re gone and I’m going to re-test VIP, TGF-b1, and MARCoNS next week. I’m pretty sure MARCoNS will still be negative and TGF-b1 within reason, but my suspicion is the VIP will be low. Since VIP and MSH move hand-in-hand, I’ll also have a good sense for the level of MSH.
My protocol was to nebulize povidone iodine twice a day along with a standard 0.1mL spray of straight Sovereign Silver into each nostril a few other times during the day. I did not mix in EDTA with the silver because of the issue discovered by Dr. Musto’s research wherein some brands of silver bound to the EDTA.
In fact, I happen to come across Dr. Joe Musto’s report on experiments Microbiology DX labs ran using colloidal silver to knock out MARCoNS “in vitro” (Petri dish). The report concludes that colloidal silver at 21ppm was enough to knock out various MARCoNS strains protect by differing strengths of biofilm. In addition, colloidal silver also eradicated Coag Negative Staph, MARSA, various gram negative and positive bacteria, along with 13 different molds and 5 different yeasts. Silver really works.
The report goes on to suggest that the addition of EDTA and the sticking agent, Muculox, should make the silver even more potent. For those interested, Hopkinton Drug has a combination spray that includes 25 ppm silver, 0.5% EDTA, and 15% Muculox. I have no affiliations.
In his report, Dr. Musto also sites research showing that colloidal silver does not promote drug resistance organisms, does not interact with other drugs, and breaks through biofilms. The report also notes that quality colloidal silver does not cause “Argyria” – where a person’s skin develops a bluish tint. The bottom line is that silver works, and based upon my own experience, has no noticeable side-effects. This is in contrast to BEG spray that caused me to crash with severe fatigue and body aches at the end of a month of treatment.
Recently, I was clued into the fact that some Shoemaker trained physicians have split off and formed the International Society for Environmentally Acquired Illness (ISEAI) – pronounced “I See I”. While Dr. Shoemaker’s protocol has worked wonders for many, there are others, like myself, whose outcome has fallen short. Dr. Shoemaker continues to pursue solutions for folks like me through his work in Genomics. Other doctors in the ISEAI camp are working to find solutions to more difficult cases by looking at confounding infections and trying other approaches. Personally, I think we need both types of doctors and I can’t begin to express how truly grateful I am for them all.
I actually signed up to be a member of ISEAI because I like reading about CIRS. They do have quite a variety of articles for Members but a lot of them are fairly “geeky” with minimal readily actionable material. Their free education page is where the “good stuff” is for the person with average interest. I would seriously consider supporting their work.
Pictured (left to right): Dr Neil Nathan, Dr Sonia Rapaport, Dr Mary Ackerley, Dr Lauren Tessier, Dr Keith Berndtson.
For some time, I have been pursuing the parasite factor. The Internet is littered with stories of folks that got their lives back after treating parasites. Books like Dr. Simon Yu’s Accidental Cure: Extraordinary Medicine add further import to addressing parasites. In his book, Dr. Yu recounts how frequently a strong regiment of parasite meds reversed a myriad of symptoms in his patients – see Dr. Yu’s long list of articles for more information. Dr. Klinghardt has commented that treating parasites is one of the first steps of recovery as he believes in starting with the largest “bugs” and working down through the smaller ones.
- Gas and Bloating
- Irritable bowel syndrome
- Joint and muscle aches and pains
- Skin conditions
- Sleep disturbances
- Teeth grinding
- Chronic fatigue
- Immune Dysfunction
- Irritable bowel
- Dry cough
- Lymph blockage
- Brain fog
- Memory loss
- Common Symptoms of Parasites in Humans
- Parasites Versus Allergy Symptoms
At the time that I first started looking into parasites, I was too sick to travel and the thought of taking really strong anti-parasite medications was overwhelming. As such, I started looking around for other solutions. I found two plant-based remedies that seemed promising, P/W/A Adult Dewormer from the Barefoot Herbalist and Mimosa Pudica – see also Garry N Sun.
If you read over some of the Barefoot Herbalists material, you get a sense for the care he takes in selecting only the best plants. My wife and I will go through a course of P/W/A Adult Dewormer on a yearly basis as a preventative measure. Mimosa Pudica is frequently mentioned by alternative doctors as a strong anti-parasitic plant. I have not tried Mimosa Pudica because at the time, it wasn’t being discussed much. There a numerous other treatments but these are the two that I liked.
Parasite DIY Testing
One of the issues that is often brought up around parasites is that there isn’t any good testing. At that time, Dr. Klinghardt was saying that by the time stool samples got to the lab that much of the evidence of parasites was lost. Hearing this and already owning a microscope that I used to evaluate mold spore samples, I decided to do my own stool evaluation following the directions in resources like the ones below.
- Fecal Floatation
- Fecal Centrifugation
- Tutorial McMaster Egg Counting Method
- Fecal Centrifugation is Better
- Microscopy Stains You Can Make at Home
- Microscopy Stains You Can Make at Home
- DIY Fecal Exams
- Parasitological Examination of Feces
Initially, I used the “fecal floatation” method wherein a small sample is place in a special vial filled with floatation solution. It’s easy enough to do, and with an inexpensive 400X microscope, is frequently used by veterinarians. Later, I transitioned to using a hand-crank centrifuge to get samples with less “debris”.
What I learned is that although either of these approaches is perfectly fine for finding larger parasites, it really takes lots of experience and special staining to find the smaller ones. Even identifying larger parasites is best done by working with someone with experience. Below are a couple of images of what I was initially convinced were segments of tape worms. Upon doing more research, I now believe they are just bits of food – likely coconut fiber.
At the time when I thought I’d found tapeworms, I sent in a sample to Parasitology Center along with pictures of what I’d found. Having heard that it’s often difficult to evaluate samples that are days old, I thought the pictures would be helpful and politely asked if they could review them too. I was surprised when the office manager wrote back that ” “We do not view pictures for diagnostic purposes as cell walls/sex organs etc. cannot be confirmed. “ I tried to explain that I wasn’t looking for anything definitive. I thought the pictures could be helpful and their input would also help me learn a bit more about how to identify parasites. That conversation went from bad to worse; I don’t like to be dismissed. It concluded with me deciding that my money is best spent elsewhere.
As a consequence and shortly after, I sent in a sample to ParaWellness run by Raphael d’Angelo MD. Whereas Parasitology didn’t find anything, ParaWellness found two types of protozoa – Endolimax nana and Entamoeba hartmanni. According to Dr. d’Angelo, in sufficient numbers these parasites can be problematic. I treated using Dr. d’Angelo’s proprietary essential oils. Symptomatically, the oils did help somewhat with SIBO gut issues but that’s about it. I was told that the essential oil tablets I was taking do help treat SIBO too. In terms of the protozoa, apparently they weren’t an issue for me as I didn’t notice any significant improvement – I never re-tested after treatment.
After my health had recovered enough following Dr. Shoemaker’s protocol, I decided to travel out to St. Louis to see Dr. Yu. In his book, Dr. Yu discusses the fact that parasites can live in other places other than the intestines – heart, lungs, liver, etc. In other words, just because the gut is clear of them doesn’t mean they aren’t hanging out elsewhere and wreaking all sorts of havoc.
Just like trying to find parasites in stool samples, there no easy and reliable way to find parasites in other parts of the body. And unlike a stool test, there is no way to take samples in order to be able to visually look for these other parasites. As such, Dr. Yu approach is a mix of Electrodermal Testing (ET), acupuncture, a medical history review along with a physical exam and questions.
At his office, I was given several tests that appeared to work along the lines of Electrodermal Testing (ET). Based upon acupuncture, ET measures the electrical characteristics of the skin in order to determine the health of internal organs. Dr. Yu then reviewed the test results and felt my pulse in my hands and feet – acupuncture pulse diagnosis.
I have to admit, I was a bit disappointed in Dr. Yu’s style. To me, he came across as being somewhat dismissive. For example, I had included in my history some older hormone test results along with current results. Even though I had read the office’s directions asking that only newer labs be included, I thought a history of those results may be helpful. Rather than simply ignore the older results, Dr. Yu made the effort to point out that older labs aren’t useful. He also waved off questions I had about the purpose and results of the ET testing that had been done. This somewhat dismissive/condescending tone was also reflected in the staff.
Don’t get me wrong, from what I’ve read, Dr. Yu is a very good doctor. He has gotten a lot of really sick people better and trains other doctors in his approach. I also admit to not being able to relate very well with the older style of doctor-patient relationship that is more authoritative. Also, I can only imagine how trying it must be working with patients that are really sick and “all over the board”.
Setting his bedside manner aside, Dr. Yu concluded that I appeared to have a typical parasite presentation. He felt that my liver wasn’t working well and thought I could possibly have liver flukes. This seemed to be consistent with the latest metabolic blood panel I had done showing somewhat elevated BUN liver levels.
Dr. Yu’s Parasite Protocol
Detox & Support
- Whole Body Program & Colon Program by The Whole Body Store – 3 tablets Whole Body and 1 tablet Colon Program with largest meal for 3-6 months ($2.57/day, $77/month)
- Renelix by Pekana Homeopathic Spagyrics – 20 (1 ml) drops 4 times daily for 3 months ($0.39/ml, $1.56/day) – detox adjunct
- Proaller spag. drops by Pekana Homeopathic Spagyrics – 20 (1 ml) drops 4 times daily for 3 months ($0.50/ml, $2.00/day) – detox adjunct
- Ailgeno drops by Pekana Homeopathic Spagyrics – 20 (1 ml) drops 4 times daily for 3 months ($0.50/ml, $2.00/day) – detox adjunct
- apo-Hepat drops by Pekana Homeopathic Spagyrics – 20 (1 ml) drops 4 times daily for 3 months ($0.38/ml, $1.52/day) – detox adjunct
- Prescript-Assist – 1 tablet 3 times daily for 3 months – probiotic adjunct ($0.67/tablet, $2.00/day) – 29 different strains of soil-based probiotics along with probiotics. Note: I have reservations about soil-based probiotics so I did not take this.
- Start 5 days after the detox and homeopathies
- Ivermectin – 1 tablet 12mg 3 times daily for 30 days ($1.30/tablet, $3.90/day)
- Tinidazole (Tiniba) – 1 tablet 500mg 3 times daily for 30 days from Rite-Aid, CVS,etc with prescription ($0.27/tablet, $0.81/day). Note: Cut down on sugars & carbs for 3-4 months afterwards as Tinidazole is an antibiotic.
- Praziquantel (Biltricide) – 2 tablet 600mg 3 times daily for 30 days ($0.65/tablet, $3.90) Note: Used to treat fish tanks.
- MediHerb Wormwood Complex M1490 – 4 tablets 3 times daily ($0.60/tablet, $7.20/day)
- Where to Buy Parasite Meds from Debug Your Health
- Start 3 days after the parasite medicines.
- Sporanox – 105mg tablet 3 times daily for 30 days
- Diflucan – 105mg tablet 3 times daily for 30 days
- Mycotoxin Inhibitor – 30 drops (1.5ml) daily – anti-fungal adjunct
- SafeCare Candida by Dr. King – 1 teaspoon 3 times daily for 30 days (directions state 1 capful 2 times daily: $1.55/day)
- Dr. King’s Candida Test
My Treatment Experience
Below are the notes I took while following Dr. Yu’s parasite protocol.
- After a couple days starting Dr. Yu’s pharmaceuticals for parasites, I notice that I have very slight stomach upset at times and the sort of hot and agitated feeling in my lower intestines that often accompanies diarrhea.
- In addition, my dreams changed from mostly pleasant, as is common now that I’m using positive-airway-pressure (PAP) therapy, to being dark. For example, just like when I was choking for air in my sleep before using PAP, I’m back in a dilapidated house trying to make repairs in the basement. Instead of trying to repair water leaks, I’m now trying to clean up greasy mold that really stinks and is up to 1/4″ thick on all the walls. In another dream, our country is under attack and I’m trying to escape from the invading forces. The bad dreams went away by day three.
- I personally find the content interesting, but mostly it’s the fact that my dreams have gone black that seems telling. Is it the drugs themselves or the parasites reacting to the drugs? I don’t know.
- My sleep is definitely worse. I just don’t feel sleepy. However, there is very little to no anxiety and this is a God send. I do feel more energized throughout the day and instead of waking up feeling groggy, I wake up alert – albeit still a little tired.
- Days 3-4: I had loose stools that appeared greasy along with a slight upset stomach at times. I did have a small amount of bright red blood in the stools as well.
- Days 5-7: No upset stomach, blood in stool went away, no noticeable parasites in stool, more energy, feel less enflamed, sleep is not any better, less sugar craving, wake up feeling more refreshed.
- Days 8-12: Quite tired by evening, stools firm up a little but still twice as frequent.
- Days 12-20: Quite tired by evening, bowel movements are twice as frequent. Weird tactile sensations for a few days like when you’re sick and feel like you tongue is furry. Less food craving and more flashes of light that appear for a split second in the periphery and then disappear – this turned out to be a separate issue (vitreous detachment in the right eye).
- Later in the third week, fatigue and body aches got progressively worse to the point that I stopped Tinidazole for a couple of days and then re-started. I did not stop any of the others. The pleasure of intimacy was more focused and stronger.
- Overall, no appreciable improvement long term. Note: This does not mean that I’m recommending ignoring the parasite factor.
Mindfulness of Mind
These days, I’m having new insight into the mind-body-spirit relationship. For example, I’m really struck with how the body has a great degree of anonymity but also relies upon and responds to thoughts in the mind. The mind itself innately categorizes experience in the flash along with assigning value to it. This is essential in order to survive in this dualistic world – we need to be able to quickly respond to our environment. Meaningful change in how the mind processes experience can be had through various practices.
One interesting question to ask is to what degree we are control any of our thoughts. So much of the mind’s workings seem to be preconditioned – past experience of the individual and groups the individual interacts with have a very large impact. Really, to what extent you can call any thought your own? Very little from what I can tell.
Spirit appears to stand apart from the body and mind. It is ineffable and sets the backdrop against which day-to-day life plays out. In the end, we are not our bodies or minds. The solidity of body and mind varies while Spirit is timeless and immutable.
Having said this, I’ve found it very helpful to become mindful of my thoughts. Even slight changes in patterns can be indicative of exposure to toxins. This can be difficult to master at first because we all identify so closely with the thoughts and their ensuing feelings. For many, they are their thoughts. This is not the case. You are Spirit first and foremost – made in God’s image or being with Holy Spirit.
For example, I often begin to ruminate when I’m being exposed. I end up going over and over some particular thought pattern. I suspect this is my mind’s unconscious response to the body sending alert signals? Something is wrong and my mind starts looking for trouble. This is all mostly unconscious. Dwelling on past wrongs, interpreting people’s comments negatively, and so on are clues that the environment is likely toxic. As a result of this insight, I don’t tend to take what goes on in my head personally anymore. I see it more as a way of telling when my body needs help.
Likewise, it’s very instructive to really feeeeel what’s going on in the body. For example, on the surface I may feel twinges of anxiety but when I step into my body and feel what’s going on, I realize that I’m experiencing a lot of physical pain – thanks low MSH. Other times, I may be feeling really disconnected and alone on the surface only to realize that when I take the time to experience what’s going on in my body that I’m exhausted. There are practices a person can do to learn to tune into their bodies – westerners in particular tend to “live from the neck up”.
Being less reactive nowadays, I’m experimenting more with foods. I find that I really have to limit processed carbs like rice crackers and even foods like root chips. I do OK with fruit in moderation and have no issues with meat and veggies. Anyway, my point is that I really try to pay attention an hour or so after a meal to get a sense for how those foods work for me. If I feel sleepy or loopy, there is an issue.
I’ve also learned that it’s important for me to eat small meals more frequently. With adrenal fatigue, the body just doesn’t have the resources to digest larger meals. Eating less and more often gives me more energy through out the day.
Apparently, HLA-DR testing has fallen out of favor. In 2017, Dr. Sonia Rapaport presented at the International Conference on Chronic Pathologies. At 10:30 in that presentation, she discusses the fact that the number of people that have a susceptible haplotype is much higher than the 24% reported by Dr. Shoemaker. Race, country, and ethnicity all play a role. For example, 90% of folks in Belgium have at least one “bad” halplotype. Given this, she seriously questioned the usefulness of HLA-DR testing.
Below Sean also points out that in the 2016 Irvine Mold Conference that Dr. Shoemaker himself commented that HLA-DR testing is questionable. I don’t have those videos, but I do have notes that others took of the conference. At that time, Dr. Rapaport was already looking into HLA-DR.