Posted by: eaubeauhorn | March 5, 2011

Between the Rock and the Hard Place: more on the Beginning

If you’ve read much of this blog, you’ll know that I have struggled with some very knotty health problems over the last decade or so. I’ve posted this-and-that which I found to have some benefit, but always have been frustrated at not being able to find out, from anyone at all, degreed or not, expensive or not, what was wrong and how to fix it. I have had much, over my life, of the pat-pat-on-the-head-oh-just-relax-you-are-a-hysterical-female-take-this-drug approach. Idiots all. Not all of them male, either; some of the worst offenders were women.

Thank God for the internet. Without it I would be toast, diagnosed with Alzeimer’s in the near future, making the decision at some future point to take my Final Exit into my own hands rather than rot in a nursing home.

The story:

A friend of mine writes books and blogs. I’m on his distribution list, and often read what he has to say even though most of it is about history, which bores me even though it is his passion. He is someone who is driven to contact what I will simply call “the rest of him,” and those of you who don’t understand that, I don’t have time to go into it. Anyhoo, he just mentioned in passing once, that his life-long asthma had gone away (at the time he was 67.) I grabbed onto that and wrote him with a query. He put me in contact with a research organization run, not by a doctor, but by an engineer (heh.) I ended up on a yahoo list owned by this engineer, and started in on some of the recommendations of the people on that list who had recovered from Lyme disease. Yes, I said recovered. Some without any antibiotics at all, and the longest recovery time was about a year, with the shortest just a few months. These were people with long-term chronic Lyme, not people who got bitten by a tick last week. People who were debilitated.

I got a remission of some of my worst symptoms, that lasted a few months, and which then slowly reverted to the prior state. I went nuts trying to figure out what I had been doing that I changed. I did figure it out, finally, and now, a year later, am near to where I was then, but with other things not improved and some very much worse. The improvement is that I can again eat protein without causing myself to go off the rails psychologically and physically. At least I can eat it for breakfast if not dinner. The things that are worse are in the realm of mental function: it is no longer possible for me to do the complex analysis that was the bread-and-butter of my career as an engineer. I am still piddling along with process design and software to implement, but it is clear to me that I am running on just a few cylinders.

Meanwhile I ventured into other yahoo lists; one for Bartonella, for example. Somewhere on one of these lists, someone said to read Dr. Ritchie Shoemaker’s book Mold Warriors.

And there it was.

The answer.

After all these years.

After a couple of months I tracked someone in a nearby town who treats biotoxin illness, and got the blood tests to determine what genetic makeup I am dealing with. The bad news: I have both mold genes and also the post-Lyme gene. Fortunately only one half of each pair, which is why I still function even if at half-mast. In other words, it could be worse, much worse.

The concepts in short, for those of you unwilling to find out for yourselves:

One’s genetic makeup determines your ability (or lack thereof) to bind and eliminate biotoxins. Biotoxins come in many forms; Lyme spirochetes produce them; as do the common Lyme co-infections, such as babesia, ehrlichia, bartonella, and others I can’t remember right now. And molds produce them. (The syphilis bacteria, BTW, is also a spirochete, and it was a very long time before medicine was able to take the wide variety of symptoms, many neurological, that people with long-standing syphilis had, and figure out they were due to this one spirochete.)

If one CAN eliminate biotoxins, then one will react to a mold-infested building with some respiratory distress, maybe some coughing and nasal stuffiness. But if one can NOT eliminate biotoxins, one is in trouble. The thing is, that 75% of the population can bind and eliminate biotoxins, and they can be working or living in the same building as someone who is in the 25% who cannot, and will think the 25% is malingering, hysterical, or insane. If a genetically susceptible individual lives or works in a moldy environment, the consequences are severe. You end up with people diagnosed with things like CFS and fibromyalgia, which are fancy names meaning “we don’t know what is wrong with you.” And instead of having the cause treated, the sufferer is given drugs for the symptoms. How would you like to have a long-term, flaming case of syphilis-gone-neurological and be given drugs for the symptoms? Huh?

So I’m in the 25%. All indications so far are that I do not have Lyme disease (although for a time I thought I did) and that my neurological problems are due purely to mold toxin exposure.

One more word on mold; the mold we are talking about is not your generic basically harmless mold, but super-mold; think MRSA to get the concept across. MRSA came about because of overuse of antibiotics (or maybe just “use,” period) and super-mold occurred because of anti-fungals used on crops. So there are super-molds just like MRSA is a super-bug. The best known in the general populace is stachybotries, the “black mold” you sometimes hear about. (Not all black molds are stachybotries.)

The 25% of us who cannot bind and eliminate biotoxins are in deep doo-doo.

These super-molds are everywhere; people who are highly reactive have to live outside, on the move, and stay away from what they call plumes of airborne mold toxins that they react to violently if they come in contact. No, they are not nuts; they are trying to not die. Many of them have lost their career, all their possessions, and their life savings trying to get away from mold toxins. Every time possessions become contaminated, they must be discarded and new ones acquired (from mold-free sources, which is becoming more and more difficult,) which, of course over time, also become contaminated and must also be discarded. Being highly mold-reactive is an incredibly expensive situation to be in. You can’t just wash your clothes because washing does not get rid of mold spores. We’re not talking “complete” mold spores either. Like anything else, mold spores can get broken apart, but the extreme reactors react to a particle of mold spore just as they do to an “entire” mold spore. 

Being nearly everywhere, super-molds get into buildings easily. The problem is that if they find an environment they like, they set up a stronghold. Outdoors, there are so many checks and balances, that they can’t set up strongholds; they are held in check by everything else out there. (So far, at least.) Inside….they can get into a wall, on top of ceiling tiles, anywhere they can find. Usually the colonies are hidden; you might see a water stain on a ceiling tile. They might be growing under the carpet padding; inside a wall; just about anywhere that they have found hospitable, usually from the presence of water. It doesn’t take long, only about three days after a water exposure, before you can have a serious problem. And they continually release spores in the attempt to establish new strongholds. They love anything made of wood or wood products; they love plastics. The only thing I know of that they won’t grow on is bare metal, and some of the people who are severe reactors are living in bare metal buildings in the middle of nowhere.

The really, really bad news is that if you are in the 25%, you become more reactive on every successive exposure. Permanent organ and brain damage occurs. Just to clarify, this is not an allergic reaction; it is an inflammatory reaction and can be measured in blood tests. The reason why I and people like me have had the litany of “all your tests are normal” for decade upon decade, is that the wrong tests were being done. Inflammatory markers were not being checked; it was like the drunk who is looking under the street light for the keys he lost in the dark alley. When queried as to why he is looking under the street light, he replies “because I can see here.” It doesn’t matter that that is not where the keys are; it matters only that this is the only place he can see so he looks there. So all his tests are normal too, but he doesn’t find his keys.

So back to me: finally I know why I have not been healthy for my entire life, and why the last decade has been a continual, desperation-inducing descent into disability. Not only is my workplace contaminated, but the house that I bought nine years ago is contaminated, giving me near-continuous exposure. Once I was coached to observe not just where I felt better (outside; I love to camp because I feel so much better when I camp) but where and how I felt worse, it became painfully obvious. Now, I know that just walking inside my house after I have been outside, causes me to instantly start coughing. All my attempts to find out what I was ingesting at work to cause me to get running sinuses and a sore throat an hour after I got there, were wrong. It is the environment itself, not something I’m eating. I gave up so many things….tea, coffee, all the stuff that I like to have in the morning, because my reaction to the environment fit the time frame of when I ingested them. The reaction to the environment happened to coincide with the time of ingestion. Phooey.

An unfortunate and very, very common symptom of biotoxin illness is something that is called brain fog. That is, thoughts don’t remain around long enough to be acted on; intellect is not working well enough to form a plan. It has every appearance of Alzeimer’s. (Did you know that 7 out of 10 autopsied brains of those who died of “Alzeimer’s” contained Lyme spirochetes?) Getting out of a moldy environment requires an exquisite plan; otherwise, all those people who have lost their life savings would not have lost them; it happens because they are so mentally fuzzy that they just can’t get it right the first ten times. They go in stages, hanging on a treasured possession only to find that it contaminates their new environment. They move into a moldy apartment (from an old moldy apartment) and can’t afford to drop the lease. And so forth.

The doctor who did the genetic tests told me that I have to get out of my house. Mold Warriors said the same thing: the very first thing you have to do if you are mold toxin susceptible is get out of the environment that is toxic. But if your brain is not working, you can’t figure out how to do that. Yeah, I could go rent an apartment, but what is to guarantee that it is not also mold-infested? Do I just eat the lease, go rent another one, eat that lease, and so forth until all my savings are gone? Many people have done that.

I refuse, until I can get in fresh air long enough to clear my mind, and until I can get a sufficient quantity of detox-enabling supplements in me, over time, to do some good. I’m sort of holding my own but not doing well. Two months ago I started sleeping in my garage, which has screens up high that bring in fresh air. I could tell an immediate difference in my functioning; not quite like camping but sort of in the same category. However, the stuff I took out to the garage was of course itself mold-spore infested. Because the garage is almost outside, I don’t think any strongholds have been set up, but I am still breathing mold spores from my sleeping bag and jammies every night.

I work at home on Tuesdays and Thursdays. This is Saturday; this past Thursday I set up the laptop outside on the back porch (we are having gorgeous weather right now.) I worked out there all day. I felt incredibly peaceful, an unimaginable state of mind working either at work or inside my house. Just the fresh air was the entire difference. All this time, it hasn’t been “the work” or “the people;” it has been “the mold.” Sitting here now, at my computer inside my house, I feel crappy (It is too windy to work outside today.) I can tell that the keyboard has mold spores all over it; even though I brought the computer out of the room that I have determined is the worst one in the house, it still affects me greatly. I vacuumed it and wiped it down with a damp cloth; it is still contaminated enough that if feels like the Breeze of Hell is wafting over me as I type.

But I must get this out there, even if if helps only one person.

I was looking into buying a bare-bones cargo van, bare metal, to travel in (and, frankly, live in,) this summer. But it won’t fit in the garage. It is seven feet tall and my garage door is six feet; a support beam is also less than seven feet. The way I have kept my current vehicle from being contaminated (unknowingly, but the urge was strong) has been to have the windows down every night, in the garage that itself is open to outside air. But I can’t do that with a van that won’t fit in the garage, and we are not able, in southern AZ, to leave a vehicle outside with the windows down because it will go to Mexico without us.

So I am grateful to finally know for sure what is wrong, and stymied as to what to do about it. I know I need to live essentially outdoors (or in a VERY drafty building) for at least a year; I don’t know how to get rid of my house, though. If I sell it cheap and make it very clear that I think it has mold, the most likely scenario is that it will be snapped up by someone who will simply re-sell it at a profit and pocket the difference, keeping mum about the mold. Competent remediation (we’re talking Hazmat suits) can be astronomically expensive, costing more than the house is worth. I do not want to subject someone else to what has happened to me: character is what you do when no one is looking.

When people move, trying to get to a mold-free environment, they must discard all their soft goods: furniture, clothing, bedding, mattresses and box springs, anything made of wood or plastic or fabric, that $40k heirloom Persian carpet that has been in the family for generations, all those paintings that you love, the 1770s cello that one has spent half a career playing. You take only things made of metal that can be successfully cleaned. You can take your tuba, but not the case you keep it in.

How to do it? I can’t do it without a working brain, and I’m not going to have a working brain until I do it.


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