Mold Induced Anxiety

Updated on November 18, 2014

Reader Comment

Self Doubt

Comments from a recent reader sparked an interesting discussion about physiological (body) and psychological (mind) induced anxiety that I thought merited placing as a separate blog post.

Marcia’s Comment

I too appreciate very much all the work you’ve put into this blog to try and help folks like us who have been sick for so long.

I didn’t quite understand your description of being anxious, but not having anxiety (even though you described it as “insanely bad”). Could you clarify what you mean by that?

Mold and Anxiety – A Primer

I just finished talking to a close family member. She’s been moldy for decades – symptomatic with a pair of moldy genes. She was the first of us to fall hard. No one knew about mold toxins back then. As a result, a wrong turn was taken. Instead of getting to the core of the problem, mold toxins, she’s been perpetually rotated through a litany of mind-altering drugs for decades.

Too many visits to well-meaning but clueless psychiatrists have her convinced it’s “all in her head”. In a way, she’s right in her conviction. A lot of mold symptoms do affect the brain. The important caveat is that the driver isn’t due to some trauma in her youth, weak character, or some other unknown – its massive inflammation.

Dr. Mary Ackerley

Say a prayer for us. We’re traveling to see Dr. Mary Ackerely soon. I’m excited. Dr. Ackerely is the perfect fit in this case being both a Psychiatrist familiar with conventional psychotropic drugs and the use of natural amino acid alternatives (see Julia Ross and others) along with being certified by Dr. Shoemaker. She’s uniquely qualified to address inflammatory based Biotoxin Illness and knows about how to deal with the side-effects of getting off the drug bandwagon – once the inflammation is brought down.

So for those of you that are similarly convinced that anxiety, obsessive thoughts, depression, apathy and the like are mostly a result of “bad genes”, a weak character, unresolved childhood trauma and the like, it’s time to wake up. In the 2016 Mold Conference, Dr. Ackerley commented that malaise, fatigue, slowed thoughts and movements, an inability to feel pleasure, and social withdrawal are common in Chronic Inflammatory Response Syndrome (CIRS). On the other hand, feeling guilty, worthless, or hopeless generally are not CIRS related. Below are several studies showing how toxins are very often at the core of CIRS symptoms along with making a connection of my own between the work of Dr. Shoemaker and others.

Psychiatric Symptoms and Mold – Studies

This part doesn’t need any explanation. Below is a list of resources that make the connection between inflammation driven by biotoxins and adverse mental health. I’m sure there are many, many more.

My Mold-Anxiety Hypothesis

Brain

As I studied various health related materials over the years, certain connections between various bits of information seemed to be calling out to be made. One of them is between mold and anxiety. However, before making this connection, we need to look at already proven connections between lactic acid or lactate and anxiety. Here are some facts.

We know from Dr. Shoemaker’s work that people with Biotoxin Illness have low Vascular Endothelial Growth Factor (VEGF) combined with hypoperfusion and hypoxia. What this means is that the bodies of these sick folks don’t get the oxygen they need. In short, this happens because cytokines (see What Is Biotoxin Illness) trigger endothelial cells to release binders that then hold white blood cells in place plugging up your veins. When your veins (capillaries) don’t flow enough blood, the body’s response is to trigger new capillary growth by increasing VEGF. Unfortunately, low VEGF common in Biotoxin folks means that the body is unable to compensate by growing new blood vessels.

In addition and also from Dr. Shoemaker, we know that due to capillary hypoperfusion (poor circulation) glucose stores in the body that are used to make energy don’t get converted well. Instead of getting 38 ATP energy units for every unit of glycogen, people suffering from capillary hypoperfusion only make 2 ATP units. It’s like when you throw a log in the fireplace but forget to open the air damper. You get a lot of smoke and very little heat.

Some of the smoke in the body is lactic acid. It’s the same when you workout really hard and get sore the next day. The soreness is due to lactic acid buildup; you worked your muscles so hard that they couldn’t get enough oxygen resulting in lactic acid buildup. Not surprisingly, the same sort of buildup occurs in the brain of those with Chronic Inflammatory Response (CIRS – i.e. Biotoxin Illness) due to a lack of oxygen and a high blood marker called C4a.

Panic Attacks as a Problem of pH

The inflammatory marker called C4a is a split protein that is almost always very high in biotoxin ill people – see Are You Moldy. What Dr. Shoemaker has found is that when C4a is high combined with capillary hypoperfusion that the person will have all sorts of cognitive issues like brain fog, inability to remember what was recently read, disorientation, confusion, memory loss, word finding difficulty, poor concentration/focus. What’s interesting related to this discuss of lactate buildup is that high C4a is also associated with an imbalance in the ratio of glutamate to glutamine (G/G) in the brain and also high lactate in the brain – as measured using MRI by Dr. Shoemaker (G/G<2.19 and lactate>1.29).

So what we have is a whole slew of cognitive issues and too much lactate in folks with CIRS. Here’s where I’m going to make a few connections of my own. There are studies that show many people that suffer from anxiety and panic attacks have too much lactate in their brains. I first caught wind of this listening to Chronic Fatigue expert, Dr. Paul Cheney who also discusses hypoxia (insufficient oxygen) and lactate excess – see this Dr. Cheney Seminar at 17 minutes. In addition, he mentions a study done by a Harvard professor in the 1930’s that injected lactic acid into the veins of medical students resulting in predictable panic attacks and anxiety disorders.

More recently, there are new studies showing the connection between high lactate in the brain and anxiety. In the video, Dr. Cheney comments that the brain knows it’s being smothered and freaks out. Given what’s being learned about anxiety and lactate buildup along with what we know about Biotoxin Illness and lactate buildup, it won’t surprise me one bit later on down the road if they find out that a lot of folks with anxiety disorders are suffering from Biotoxin Illness. Sort of interesting, don’t you agree? :happy:

Elevated Brain Lactate Responses To Neural Activation In Panic Disorder

Two Types of Anxiety

Afraid

Now that we’ve set the stage, I want to shift into the realm of experience and in so doing move from theory to real-life practice. In my own experience, there are two types of anxiety. One type of anxiety is driven by the body and the other by the mind. Looking at the mind, I used to meditate a lot. You get to learn a bit about how emotions and the physical responses to them can be being driven by the thoughts in your head. In other words, when you’re able to drop all thought and enter a space of deep stillness, you can see how thoughts and feelings relate.

First, a thought arises. Next, the thought is judged based upon our belief system, and finally based upon this judgment, various feelings arise. You get to see first hand how thoughts can drive emotions. Having this knowledge led to the insight that the bulk of the anxiety I was experiencing when I was really sick with Biotoxin Illness was not coming from thoughts arising in my mind but were actually being driven by the physical illness.

More specifically, as I sat and meditated, over time I became aware of another process. Instead of thoughts leading to emotions, it became apparent that physical duress in my body (massive inflammation) was actually being processed on an unconscious level. It was weird. A hidden part of my mind knew my body was in serious trouble and was freaking out about it. This in turn led to being afraid, anxious, panicky, full of dread, and the like on a conscious level.

Unlike when thoughts drive emotions, I became aware that the emotions I was experiencing were rising up out of an awareness that was happening on a non-verbal, visceral, intuitive level. Some other aspect of my being knew my body was under extreme duress and was trying to clue my conscious mind in on the situation through the only way it could – feelings and emotions. This process was the exact opposite of thoughts driving emotions. Here, feelings from my body were driving emotions and thoughts.

Later on I learned that there is something called the gut-brain axis wherein the gut is like a second brain and is tied to our brain (the one in our heads) via the vagus nerve. I could totally relate to this because it explained in part what I’d been experiencing. More specifically, that my body was in an alarm state and at a semi-unconscious level was sending signals up the vagus nerve causing my conscious mind to become anxious, jittery, distracted, and irritable for no apparent reason. This was a huge relief because up until then, I thought I was going crazy. This insight showed me that my body was really in trouble and that psychotherapy wasn’t going work. I needed to heal my body.

The Gut-Brain Axis – Chris Kresser
Think Twice: How the Gut’s “Second Brain” Influences Mood and Well-Being”

To give you a real life example, I recently tried a new probiotic. Within two days, I had super, intense anxiety, bad nightmares, and brain fog. This was totally out of the blue. It’d been years since I’d experienced this level of anxiety. Within a couple of days of stopping the probiotic, it all went away. So here’s an example where dysregulation in the body produces overwhelming emotions.

Given the insight I had about physical illness and mental states, I had to make a major shift in the way I thought about mental illness. I used to think that all emotions came from my mind only, but clearly this isn’t the case. In fact, whenever I see someone behaving in weird ways, the first thing I now think of is what’s wrong with their body. (By the way, I’m not saying probiotics are bad, just that folks with Biotoxin Illness almost always have messed up gut flora that needs to be treated with care.)

Related to Biotoxin Illness, we know from Dr. Shoemaker that the hormone MSH is almost always low in people with Biotoxin Illness resulting in an increased risk of Candida and gut permeability. It’s also known that 95% of the brain neurotransmitter, serotonin, is produced in the gut. When this important neurotransmitter is low, we become anxious, depressed, obsessive, nervous, don’t sleep, and so on. When we’re flush with it, we feel confident, are emotionally stable, have a positive outlook, and laugh a lot. Given the connections already made between inflammation and psychiatric symptoms and now gut health and mental well-being, you can see when I’m hit with anxiety that isn’t driven by inappropriate mental maps that I look to biotoxins and gut issues.

Mice Anxiety Decreased By Probiotics

Mental Mapping

Neurons

So I’ve talked a bit about how thoughts can drive emotions and even more germane to chronic illness about how your physical well-being can drive emotions. At this point, I’d like to look at how when strong, negative experiences imprint upon the mind that you can get into trouble later on. To do this, you need some basics.

When we feel threatened in one way or another, the fight-or-flight center of the brain, the limbic system, is activated. When this happens the body prepares to run like hell or freeze. It’s a built-in defense mechanism.

Specific to mental mappings, along with increased heart rate, shallow breathing and the like, adrenaline and cortisol increase. Both of these hormones enhance memory. As a result, the more threatening the situation is, the deeper the impression on the mind will be. It’s what keeps us from doing really dumb stuff twice – well most of the time :blink:

Fight or Flight- Limbic System

Sometimes we’re conscious of why we behave the way we do but often we’re not. To give you an example of a strong conscious mapping, I will tell you why I never hold an air-nailer in such a way that it’s pointing at any part of my body – even if it’s firmly pressed up against lumber. This is a common practice with carpenters.

When I was young, all I could afford was a used nailer that had a bad tendency of firing two nails in rapid succession whenever it felt like it. One time when I was holding a board in position with my left hand and the nailer pointed in that same direction, the nailer fired twice. The first nail went into the board as planned. However, the jarring action of driving the first nail meant the second nail just nicked the intended board, sailed through the air a foot and stuck right into the bone of my left thumb about 1/4″.

Nail

I was alone and high up framing a roof. I needed both hands to climb down. Even though it wasn’t particularly painful, it was unsettling as I reached over, grabbed that large, 16 penny nail with my right hand and pulled. It was a weird feeling sort of like pulling your foot out of thick mud. After extracting the nail, I climbed down and went to the doctor. Ever since that experience, I don’t care how focused I am on my work, whenever the tip of that gun aims in my direction, I get a visceral fear reaction if I even think about pulling the trigger.

Unlike the previous example of a conscious mapping, a lot of times the impressions that are made are unconscious. Maybe we get hit in the head with a baseball at a young age and later on in life all we know is that we really don’t like the game. We don’t know why when we see people playing the game that all we want to do is get away. We just do. I believe that same thing can happen with deep illnesses including Biotoxin Illness. Later on, when we re-experience certain triggers that got strongly associated with the illness, it can generate intense emotions.

From where I’m coming from, that’s why various techniques like Emotional Freedom Technique (EFT) and Dynamic Neural Retraining System (DNRS) work. Basically, these approaches help you to create new positive associations with past experiences. This is done by recalling the mental landscape that tends to trigger anxiety or some other undesired response and then re-associate that mental landscape with new positive experiences.

As I started to heal my body and the situation became less claustrophobic, it became apparent that some of the remaining anxiety and fear I was experiencing did in fact come from my mind – was not being driven by an ill body. I would watch how my mind would tend toward over-inflating even the slightest signals in a sort of feedback loop that would make the situation much worse.

So in the beginning when I was really sick, I did various practices aimed at dampening down the fight-or flight response that was being driven by an ill body. Later on when my body was doing better and the huge fight-or-flight response was gone; I would still react to even minor sensations in my body that had been associated with the intense experiences of being ill.

For example, sometimes if I can’t breath well out of one nostril, it can trigger strong anxiety perhaps because for a time when I was really sick I would get this intense rush through my whole body starting at my head after eating a heavy meal followed by an inability to breath to the point of almost passing out. In other words, clearly there were some really strong associations that are made on a mostly unconscious level between all sorts of triggers and the more intense experiences of this illness. Some of the associations I’m aware of but many are unconscious.

Having said this, I want to back up a bit and make it clear that until I healed my body, the bulk of the anxiety, dread, bizarre thinking, and the like that were being driven by physical processes did not go away until I got better. I could meditate and still my mind only to have it go on high alert within minutes or hours after a session. Other times, my mind would bounce from thought to thought at super high speed, sort of like those commercials where they flash one image after another in rapid succession. Until I healed my body enough, anxiety, paranoia, fear, and altered thinking were unrelenting.

In fact, when I was really sick, I mentioned that through meditation I could quiet my anxious mind only to have it all flare up again full-throttle within as little as an hour. This was on a good day. On a bad day all I could do was walk around reciting a prayer of one type or another because there was no way in hell any practice was going to address the insanity/dysregulation that was in play. After a time, I would just sit or lie not allowing myself to follow any thoughts as thinking itself became too painful and draining. It was like being a zombie.

Related to my current situation, as I heal more and more, a lot of the craziness is falling away on its own. This has given me more and more space and a sense of security such that I’m now able to create new, positive mental associations. Nowadays, when normal levels of anxiety arise from daily life, I’m able to successfully work through it in a positive way rewriting unhealthy mappings.

I’m lucky. I’ve got a loving wife, family, friends, and years of experience working with my mind. I think that with time, I’ll be able to successfully rewrite this dark chapter of my life. For those that aren’t so lucky, sometimes those mental mappings can be quite deep and when they are then professional help can be really useful.

Re-mapping past negative experiences can be quite powerful. It’s why some folks with chemical sensitivity can get better through brain re-training techniques. It’s why Dr. Klinghardt includes various emotional healing therapies near the end of his treatment protocol for chronic illness.

Reassure

It’s all about letting the sub-conscious in on the fact that the coast is clear and it doesn’t need to sound the alarm when certain triggers are experienced. As mentioned, when you’re in the thick of it with Biotoxin Illness, you have to do what you can to put out the fires of anxiety that are constantly being lit by an ill body but don’t be surprised if you don’t make real headway until your body recovers some.

Before I got really sick, I never got anxious. Today, I rarely get anxious anymore. When I do, I immediately engage a quieting technique. If it doesn’t work, I know I’ve taken a mold hit or my gut is messed up. It’s real Grace that we’re given bodies that are so capable of living on this earth in such a balanced way and of recovering from extreme illnesses like CIRS with proper care.

Marcia’s Follow-up Comment

I appreciate and agree with almost every single thing you said in your reply, even the EFT and DNRS stuff. I do sometimes wonder if some of the reactions that some (not pointing to you or anyone in particular) have at times might sometimes be due to this ‘automatic’ subconscious reaction and not actually mold or another environmental issue. (Also) In any disease or illness, especially if prolonged, it’s easy to become suggestible (see ME/CFS patient Howard Bloom’s video interviews), and if one reads that “this area” is bad, or going around this corner “knocked me flat”, over and over and over again, then I do sometimes wonder if the ‘nocebo’ effect might be in action? I don’t know, but am just wondering if that could happen sometimes.

Thanks.

Mold Illness Is Traumatic

Despair

We’re on the same page. If I may, I’d like to rattle on a bit more about this topic in the hopes that others may find it useful.

From my experience, there is very real psychological trauma that results from Biotoxin Illness. Severe sleep deprivation, major neurotransmitter imbalances, dramatic hormonal swings, remodeling of the brain’s physical structure and chemistry, debilitating fatigue and pain, all at levels that are equivalent to being beaten ruthlessly with a steel pipe on a daily basis for years on end will most definitely scar the psyche.

If we somehow manage by the Grace of God to find a way to heal our bodies, it’s my contention that most of us will remain, both at conscious and unconscious levels, highly attuned to our attacker – Biotoxins and their related inflammagens. Even if we’re physically better, re-exposure to even minute (non-harmful) levels of Biotoxins, as is inevitable, will very likely produce a strong fight-or-flight response. This would be true for nearly any victim who is forced to confront his or her brutal attacker – the psyche is going to freak out to varying degrees.

Related to the discussion above about mental mappings, I believe that there are a lot of unconscious mappings that take place between subtle physical reactions to mold toxins and really awful aspects of Biotoxin Illness. For example, we may be exposed to a small, tolerable amount of aspergillus mold that in turn causes a very slight, shortness of breath that we’re unconscious of. A few minutes later and for no apparent reason, we become anxious. On an unconscious level, the psyche knows there is mold present, remembers what that means and freaks out. With time and practice, I believe we can deal with these types of reactions using Neurosculpting or some other variant of brain remapping. (We can also use anxiety as an early warning system telling us when mold is present.)

Lisa Wimberger

Lisa Wimberger – Neurosculpting (very helpful free podcast)

The cool thing about Neurosculpting and various other re-mapping techniques is that you don’t need to know what the underlying factors are that trigger a negative response. Instead, you simply learn how to calm the mind, activate the prefrontal cortex (reasoning center of the brain), and re-map whatever the trigger is to new and positive experiences.

As an aside, I find it very interesting that what helped me most when I was really sick was to study. In effect, I was Neurosculpting. I was sitting calmly reading, activating my cortex with all sorts of “brain candy” in the form of learning new ideas. Given the focus of my studies, I was re-mapping my experiences with the life affirming intention of healing my body. (This is why when folks like Marcia write in with questions that I get excited because I know for myself how helpful this can be.)

So I agree with you that anyone who has Biotoxin Illness (really any severe illness) will almost inevitably have a response that is both physical and psychologically based. As you know, it’s just really important (not to mention completely wrong) to ever say that chronic illness (including Biotoxin Illness) is “all in a person’s head”. For folks with Biotoxin Illness, their savage attacker is literally hiding inside many of shops they visit, the homes of their neighbors, and even on the clothing of their friends. Combine this with the fact that this illness can sadistically twist your thinking in such a way that you worry about everything and live in a constant state of fear driven by chemical and physical changes in the brain, and the whole world will start to look very unsafe and black.

Daisy

Incidentally, I realize that some with Biotoxin Illness don’t get hit with super intense anxiety, feelings of dread, distorted thinking, and so on. Having been one of those that did, I personally found it very difficult to decide to stay on this earth. It was that bad. For those that can relate, realize that others in your condition have found their way back to wellness and I strongly believe you can too. Also, thank you so much for the courage it takes to continue to struggle to regain your health. I believe your effort benefits us all on many levels. You are a gift to the world.

Having acknowledged anxiety resulting from a really ill body, I totally agree with you that it’s also important to recognize the psychological aspect of any chronic illness. (It’s just that it’s important to place anxiety and other mental states in the correct context as this dictates the types of therapies used and social validity that the illness is given. I hope this discussion helps to set this context.) Personally, I know I’ve still got some work to do that allows me to feel OK again about living in this world; when you see first-hand just how horrific life can be, it takes time to integrate this knowledge into a new overall positive view of the world.

Nocebo Effect and Suggestibility

Regarding “nocebo”, I looked it up and the nocebo effect is when “an inert substance creates harmful effects”. This is a small point relative to the overall context of this discussion but Biotoxins are not inert. They are very potent toxins. Some of the most lethal biological weapons come from mold.

So I think I get what you’re saying in effect but I would politely suggest that the definition doesn’t fit related to Biotoxins. Actually, I suspect that as medicine advances, we’ll learn that there is no such thing as either the placebo or nocebo effect – that we will find more and more subtle drivers behind all phenomena. In fact, regarding Biotoxin Illness, I believe the unconscious mind picks up on subtle changes in the body from even minute exposures and this triggers seemingly unprovoked anxiety.

Cell

Regarding suggestibility, when someone is figuratively lying on a cell room floor in a pool of blood, unable to catch his or her breath, alone and forgotten, sobbing uncontrollably, it’s of no surprise to me that this person would leap at even the slightest chance for relief. If some caring but ill-informed person comes along saying that they can free this person from his or her torturer, is it any wonder that in desperation that he or she would latch onto whatever is being espoused – even if it does sound loony? From where I’ve been, it’s completely understandable.

Now I know some, particularly the established medical community, like to say that we should all be leery of having our pocket books drained by any approach other than the current drug-based model. They’re right to the degree that when considering any alternative therapy, we should engage critical thinking, weighing the pros and cons, having lab work done when possible, and being willing to change directions if improvement isn’t forthcoming.

However, when faced with the conventional solution to chronic illness of doping up the patient so badly that he or she is but a shadow of their former self while never seriously attempting to get at the core of the problem, count me out. Even if the alternative treatment doesn’t work as well as expected, it will nonetheless provide hope where there was none and in the doing will have lifted your Spirit. This is a point that folks that haven’t been through Hell won’t be able to understand. They just think you got ripped off.

Of course, if I start taking on all sorts of weird suggestions like being afraid of a full moon because the parasites are going to get me, or being afraid to walk through the woods lest I kick up a pile of moldy leaves, or whatever extreme it is; that’s not helpful. Although, I agree that it can happen because I was freaked out about everything for a time. The trouble is that sometimes really weird ideas like Extreme Mold Avoidance actually can be very helpful so it can be hard to prioritize information. Hence my blogs on Choosing A Path and Make Mold A Top Priority.

As we struggle to find our way through all the alternative approaches, the uninformed stand over us accusing us of being weak and foolish. Most of us look fine more-or-less on the outside so to a degree it’s understandable that others can’t relate to the fact that we’re literally fighting for our lives. Granted it’s unlikely we’re going to die tomorrow, but I would argue that what you lose from being chronically ill is in some ways much worse.

Sometimes I wish there was a way to let those that belittle Biotoxin Illness to experience what it’s like for just a week to have their body and mind disassembled from the inside-out by mold toxins. I don’t care how tough anyone thinks they are. When it’s at full throttle, this illness will break anyone in short order. I know because I’ve been there. Having been down that road, I don’t think less of anyone that tries speculative treatments in an effort to heal themselves. It makes total sense and is often helpful to some degree even if it doesn’t provide substantial relief.

Small Boat

Mold guru, Erik Johnson, who practices “Extreme Mold Avoidance” to stay healthy at the end of his book Back from the Edge expresses the terrible duress Biotoxin Illness can cause when he writes, “If they have no Plan B or means of escape from these toxins, they will not survive. They will beg for a merciful death. They will commit suicide, and I cannot blame them for doing it. In my environmental bubble (that he created by implementing decontamination protocols he learned in the military), I am quite comfortable. I can have adventures, but it is a false life. I wanted to make my way back to a real life, but instead of getting medical attention for this problem (he tried for many years to get the medical establishment to get involved), all I see is people getting no meaningful help and winding up in my situation, except that they have no lifeboat to swim to (unless you happen to stumble across information related to Biotoxin Illness). It feels like I am sitting in a lifeboat watching everybody drown, and there is nothing I can do about it.”

Personally, almost all of the therapies I tried did have real potential, just not for Biotoxin Illness. Even though they didn’t get at the core of the problem, they still saved my life because it gave me hope when there was none and helped heal lesser health factors. You’ve got to put out the fires you can while working to get at the core of the problem.

In the end, we need to heal the body and mind. In my experience, in healing the body much of the anxiety, feelings of dread, paranoia, and the like simply fall away. However, it’s quite possible that strong associations will have been made on both conscious and unconscious levels that will continue to trigger the limbic system until you make a concerted effort at remapping the brain. Said another way, chronic illness is not “all in our heads”. To the degree that we deeply engage the understanding that mental well-being is strongly tied to physical health, we create new possibilities for ourselves and like finding the missing key to a map, are able to find our way back to wellness.

Thank you Marcia for asking those questions. I hope I haven’t taken too much liberty in the way I answered them.

16 thoughts on “Mold Induced Anxiety

  1. I’m currently following Dr. Shoemakers protocol and at the stage of correcting ADH/Osmolality. Also taking Dr. Richard Von Konyenburg/ Dr. Amy Yasko methylation supplements (3 months). Lately I’ve been waking up in the middle of the night with bad leg aches that last 2-5 hrs. Any idea what is causing them?

    • Hi Kimberly,

      Sounds like you got MARCoNS knocked out. Awesome.

      Are you taking DDAVP (Desmopressin) to address ADH? How’s it going?

      What’s your opinion of working with methylation? Is this the protocol you’re using:

      Simplified Approach For Lifting Methylation Block In CFS
      (March 30, 2011 Revision)
      Rich Van Konynenburg. Ph.D.

      Supplements

      • General Vitamin Neurological Health Formula: Start with one-quarter tablet and increase dosage as tolerated to 2 tablets daily
      • Hydroxy B12 Mega Drops: 2 drops under the tongue daily
      • MethylMate B: 3 drops under the tongue daily
      • Folinic acid: one-quarter capsule daily
      • Phosphatidyl Serine Complex: 1 softgel capsule daily (or lecithin)

      Low VEGF is related to poor circulation and can contribute to a build-up of excessive lactic acid resulting in cramping. According to my notes from Dr. Shoemaker, 60% of CIRS people having cramping that often leads to permanently curled toes or fingers. My guess is your legs are cramping up when you’re sleeping and then hurt after you wake. I know my calves like to cramp up while I’m sleeping. Not sure what can be done other than some stretching before going to bed. Maybe others have suggestions.

      • I take the following for methylation:
        2 All in One by Holistic Heal
        1 Perque Activated B-12 Guard – hydroxocobalamin
        1 Phosphatidyl Serine Capsule
        1/4 tablet Metagenics Fola Pro – L-5-MTHF

        My ADH is 0.8 and Osmolality 304.
        VEGF- 111 (0-115)
        MMP9- 511
        Currently on DDAVP (low dose for 9 days, lower appetite and a little nausea). When you mentioned VEGF could cause lactic acid and leg cramps it made sense. Today I’m removing all my methylation supplements (which didn’t bother me until lately) and any other supplements except Fish Oil. I’m on a very low amylose diet and high fish oil to bring down my MMP-9. Can you recommend anything else I might do to lighten my burden and reduce the lactic acid leg aches (fortunately, I don’t have cramping or curling of hands or feet). Would an Epsom salt bath every night help?

        • Thanks for posting your Methylation supplements. That All in One multi-vitamin looks interesting.

          By the way, I should have said low VEGF and I’ve changed comments to reflect this. Your VEGF is actually a little high (31-86 pg/m). Even with normal VEGF, high cytokines can still cause capillaries to get choked off (capillary hypoprofusion) resulting in poor oxygen levels such that glycogen isn’t converted well that then produces higher levels of lactic acid. I should have said this instead of bringing in low VEGF but it was easier in helping me make my main point about lactic acid build-up and cramping – see What Is Biotoxin Illness. Sorry for not being more precise the first time.

          It’s interesting to note how out of balance your ADH and Osmolality are. This is done using the normal ranges and a little algebra – Osmolality normal range: 280-300 mosmol and an ADH normal range: 1.0-13.3 pg/ml. Looking at your labs, if plasma Osmolality (not urine osmolaity) is 304 (you’re dehydrated) then ADH is calculated using the formula ((304-280)/(300-280))=(X/(13.3-1)) >>> (24/20)=(X/12.3) so X=14.76 and ADH should be around 1+14.76=15.76 (+/-) 2.5. Your ADH is 0.8 when it should be toward the high end of the range so as to cause your body to hang onto water – see updated ADH information on What Is Biotoxin Illness

          Another possibility for cramping besides capillary hypoprofusion that I think is very important for you to consider is low sodium levels. Dr. Shoemaker says you need to have serum osmolality and electrolytes checked after 5 doses (9 nights) of DDAVP to make sure your serum sodium levels are OK. Although I don’t have any notes on why Dr. Shoemaker says to check this, I’m guessing the concern is that as you increase the amount of water your body is holding, sodium levels can get too low (hyponatremia). Some of the side effects of hyponatremia are:

          • Nausea and vomiting
          • Headache
          • Confusion
          • Loss of energy and fatigue
          • Restlessness and irritability
          • Muscle weakness, spasms or cramps
          • Seizures
          • Coma

          By the way, according to Dr. Shoemaker, regardless of the degree of ADH and Osmolality imbalance, if the patient doesn’t complain about thirst or frequent urination, then DDAVP is skipped and the patient moves onto the next step. This is because ADH-MSH-VIP move together so once VIP is used, ADH should correct too.

          Epsom salt baths are supposed to be good for sore muscles. I’m not sure I’d do them every night especially if you’re pretty sick as it’s always best to start slow. Make sure to check out the Vitamin D, K2, Magnesium, and Calcium section I added to Alternative Mold Therapies as it relates to Epsom salt baths.

          • According to results on a basic metabolic panel, my serum sodium levels are within range. However, upon seeing a Doctor that is familiar with Dr. Shoemaker’s protocol, I was told to stop DDAVP and drink a lot of water.

            My leg cramps have gone away since I stopped DDAVP after 2 wks. I don’t seem to feel as dehydrated. Skin still looks like a lizard and we live in South Florida so its not the weather. At this point I think most of our remaining problems are from everything being deregulated from the mold.

  2. Regarding leg cramps…myself, my husband and his Mom are all going through Shoe’s protocol, with some additions. His Mom developed severe leg cramps. She tried a bunch of home remedies, soaks, and increasing magnesium. The magnesium was definitely the issue – however, she had to take too much for it to work. The amount she needed to stop the cramps caused severe diarrhea, and then her magnesium absorption levels dropped again. It was a catch-22! Finally, she stopped taking charcoal (which she’d been taking small doses of in addition to the CSM). The cramps stopped immediately. My husband and I both take charcoal (in fairly large doses) and CSM without issue, so this was a surprising fix. However, the results have held for his mom.

    Greg, that was great sleuthing above, btw. This is what it takes!

  3. Do you know very much about taking Losartan and VIP at the same time. Doctor said I will need to be on both for 4 months. TGF Beta 1- 9500. I am now approaching my second month. I use salt to bring up my blood pressure, but my energy and brain hasn’t improved. Maybe I just need to be patient.

    Also, I wonder if there’s a way to link your amazon acct to my amazon acct so it automatically links every time?

    • Hi Kimberly,

      My Dr. Shoemaker notes say that normally TGF-beta1 is brought down first by taking up to 50mg twice a day of Losartan (Cozaar – blood pressure pill) Often, 25mg twice a day is enough. You’re correct in monitoring blood pressure. If blood pressure goes too low, you have to rely on VIP alone. If you see a rise in TGF-beta1 when taking VIP, its indicative of an ongoing mold exposure. Also, make sure to get a baseline Lipase before starting VIP and then each month for the first three months followed by every three months afterward to ensure levels are stable during VIP therapy. Stop VIP at the first sign of a rising Lipase in combination with stomach pain indicating damage to the pancreas and gallbladder. Less than 1/10th of one-percent have Lipase issues. If VIP sits out for 8 hours, it’s junk.

      Having said this, I’m always interested in non-pharmaceutical approaches. For TGF-beta1, Dave Asprey commented that Curcumin, the active component of turmeric, is a very strong anti-inflammatory and is proven to bring down TGF-beta1 levels. Don’t know if it would work on your fairly high TGF-beta1, but it’s a thought.

      I don’t think there is a way to link Amazon semi-permanently as you’ve described. Sorry.

      • Wow, thank you for the information about Losartan. I was wondering the same thing as Kimberly above. I have extremely low blood pressure already, so I’m hesitant to try it, but still curious… This and my herbalism background have made me very interested in alternative TGF B-1 lowering substances. Here’s a brief list thus far: berberine (in certain herbs like goldenseal), sulfoaphane (like from broccoli), rehmannia (an herb), bromelain, red sage (Salvia miltorhizza), taurine, niacin, turmeric and curcumin.

        The taurine and niacain can directly affect methylation and sulfation processes in the body, so those processes should be looked at if one is thinking of taking significant amounts of those supplements.

        Curcumin from turmeric has been really well-researched and affects more biotoxin markers than just TGF B-1. On the website http://curcuminresearch.org/ is a study “Aggarwal BB. Targeting inflammation-induced obesity and metabolic diseases by curcumin and other nutraceuticals. Annu Rev Nutr. 2010 Aug 21;30:173-99”. In that research doc is an infographic on page 29. It shows that curcumin downregulates (among many other things) leptin, VEGF, too. Great stuff.

  4. I have been living a life of anxiety and right now extreme anxiety with biotoxin illness with no doctor to go and talk with. I have a conference call set up with Shoemaker on Thursday but now my wallet will be empty after that call. I always knew that there was something causing my anxiety but I could never figure it out until now. My bloodwork always came back perfect. So what do I do first?

    • I’m so sorry to hear you’re having trouble with anxiety right now. It totally sucks! I’m sure you probably saw my blog Mold Induced Anxiety.

      If you don’t have the money to go see an expert, then you’re going to have to educate yourself and find a local Doctor you can work with.

      The first step is to determine if you really do have Biotoxin Illness – see my blog Are You Moldy. In this blog, I talk about how to make a preliminary diagnosis along with the first few treatment steps.

      If you do have Biotoxin Illness, I would also strongly recommend you get on Dave Asprey’s Bulletproof Diet or Doug Kaufmann’s Phase One Diet.

      Of course, you’ll need to start reading Dr. Shoemaker’s books – I’d look at Surviving Mold first. Take a lot of notes as you read.

      Surviving Mold
      Mold Warriors
      Physician’s Approach to Biotoxin Illness DVDs

      Let us know how the conference call goes. If you don’t have lab work, then Dr. Shoemaker will be limited in what he can recommend – he’s very careful and methodical. I’ll be very curious if he has any tips for you so let us all know what you learn. I’d recommend buying a cheap electronic recording device to record your conversation – Dr. Shoemaker was cool with recording when I saw him.

      • Thanks Greg for your help. I planned on taping it so I don’t miss anything. I’m sure I have mold illness. Greg Weatherman an expert in mold came to my house and found that my HVAC system was full of mold. I get his full report on friday. It was blowing air in our home office for 16years. We have recently replaced it and all the lines that feed the register. Completely shut down the office took everything out of there and had it professionally cleaned. Also Real-time labs came back with 17.13 for Ochratoxin A. Normal is between 1.8 and 2ppb.

        • Wow, 16 years is a long time.

          So the deal is that it definitely sounds like you’ve been exposed to Aspergillus mold. However, if you don’t have a susceptible genotype, then treatment for you will be much easier. In other words, “Biotoxin Illness” specifically means you can’t clear mold toxins from your body. This is different from having a fungal infection in your body, a high RealTime labs mycotoxin count, or even being dosed with a lot of mold toxins over a long period of time.

          Personally, I think it would be well worth it to know your HLA DR and also baseline some inflammatory markers like C4a, MSH, TGF-beta1, VEGF, and the like so you know you’re heading in the right direction with treatment – assuming you do have Biotoxin Illness. You’ll probably hear the same from Dr. Shoemaker. You could start with HLA DR and C4a. By knowing your genes and baseline levels, you’ll better know where you currently stand and how careful you need to be avoiding mold. For example, especially if you have a “dreaded” genotype, then very often these folks are much more sensitive – all contaminated books, papers, and porous items definitely have to get thrown out (clothing can be washed in Borax).

          If you’re working with Greg Weatherman, you’re in good hands. He should be able to give you excellent advise on if your home and office are OK after the cleanup. In other words, it’s not uncommon for professionals to actually make the situation worse – while cleaning up the visible mold they displace even more toxins into the air that aren’t then properly cleared. Since it’s the toxins that really matter, without proper procedures, a building can be in worse shape after. I’m sure Greg Weatherman knows all about this so I’m saying this more for others that read this reply.

          FYI, there’s some controversy around the accuracy of RealTime labs.

          • I’m hearing the same about RealTime and Shoemakers office told me that as well. I agree with the test you suggested and we have them mapped to do right away after this call with Shoemaker.

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