Updated on November 3, 2014
A kind reader submitted this comment that then inspired the post below.
Most of the Doctors listed on Surviving Mold website are either Alternative Doctors or MD’s that practice alternative medicine. I contacted one of them and found out everything is on cash only basis and they won’t deal with the mold issue alone. I’ve had a stack of labs done that would choke a horse, but their office informed me they would need to repeat a long list of tests in addition to the Biotoxin issue. Where are the Doctors that get to the point, take insurance and help you get through this painful mold experience?
Dr. Shoemaker is retired and most of the Doctors that have a cursory understanding of Biotoxins will happily charge you $600-$800 for the first visit and then it turns into a money pit. How do we solve this problem?
Can’t Face the Truth
No one wants to admit mold is a problem. The chemical and agricultural industries don’t want to admit that spraying the fields for generations has killed the soil and loaded up the worlds grain supply with fungi. (As if the highly hybridized grains that have been selected for economic reasons, like resistance to being blown over by wind over any nutritional benefits, weren’t already bad enough – read “Grain Brain” or “Wheat Belly“.) There’s just way too much money and momentum behind using chemicals.
To make matters worse, we then turn around and feed this toxic grain to animals slated for human consumption. The fungi play their part and work to disassemble and digest everything they come into contact with all along this food chain. Living beings have limited defenses that are often exceeded to one degree or another by these tiny fungi. Symptoms range anywhere from mild heart palpitations after that cheap cup of coffee to much worse long term health effects – Google: “mycotoxins agriculture livestock”.
On a smaller scale, the farmer that makes his/her living using this modern farming model will naturally try to justify their actions rather than admit to having been part of destructive farming practices. It’s too huge to take on and they’re having a hard enough time just making a living. It’s much easier to accept that the push from their local Coop vis-à-vis the Government to use more Roundup along with basic N-P-K fertilization is the way to go. When you’re just trying to hang on, switching to organic seems way too risky.
Turning to insurance companies, they would go bankrupt overnight if they had to cover the expenses for proper mold remediation repairs – let along the damage done to people’s health. Like the small farmer, the builder that put up the house and the landlord renting it don’t want to admit mold is a problem either. “Come on, mold has been around forever; what’s the problem”. Armies of insurance company lawyers knowing full well the ramifications of opening Pandora’s moldy box will fight to the death over this point.
Certainly the medical industry will fight “tooth-and-nail” against any change to their highly profitable business model. Not that they don’t like using drugs, but when it comes to big business, it’s about having a predictable revenue stream and controlling the market. Concern about fungi is too new and consequently too risky to take on in earnest. Besides, there is a lot more money to be made treating symptoms in comparison to actually getting folks better.
If you’re a doctor brave enough to run tests and treat people that have been crushed by mold, get ready to defend your actions. In short order, you’ll find yourself sitting in front of your local medical review board that will use those “anonymous” and minor claims that come before them with a vengeance in an effort to remove your license – especially if you’re writing scripts for tests and prescriptions that insurance companies have to cover.
As a related aside, many moldy people are a touch “crazy”. I know because I was one – still am a bit. If you think that someone that is getting chemically torn apart from the inside out isn’t going to be prone to outbursts of irrational anger, then you’re in for a surprise. It won’t take long for any Doctor treating moldy folks before one of his/her patients feels like they’ve been wronged and goes on a rampage. Personally, I never say “boo” against any physician that is brave enough to go up against the entrenched “system” – it just weakens the effort to bring the issue of mold into the light of day. I just move on.
Finally, the average person on the street can’t understand. They feel fine. When it comes down to it, it’s super heavy to really sit and look at what we’re doing to the World. Ultimately, I believe this is what we’re asking them to do when we bring up the subject of toxic mold. It’s overwhelming. Can we blame them for wanting to pretend everything is OK?
I Thought I Was Tough
What I did was to first spend lots of money on alternative therapies, then educate myself when I realized they weren’t working, and finally tracked down a Doctor that could help. For the first two years before I learned about Biotoxin Illness, my wife and I spent just about our entire life savings ($250K) on a wide array of alternative medicine. I’m ashamed that I wasn’t tougher, that I had to resort to grabbing at whatever the next therapy was that looked promising instead of being more methodical. Most of what I tried was of little benefit but it was enough to give me hope and consequently keep me alive.
Since conventional medicine had left me for dead, without the hope afforded by modest improvements from a few alternative medicine treatments (the real key was addressing Biotoxin Illness) and the unfaltering support of my wife, I would have left this planet. Every fiber of my body was screaming that something was terribly wrong and when Life sends you such a strong message that basically says you’re no longer welcome on planet Earth, it’s tough to hear this message any other way. I’ve had people comment that they would never kill themselves but I can assure you that it can get bad enough that the only way you’ll manage not to is to essentially pray ever minute of every day that God intervenes and either helps you heal or puts you out of your misery.
Believe me; I used to think I was tough. Just to give you a sense, a while ago I went skydiving for the first time with a couple of other newbies. It was a style wherein you jump more or less independently the first time. Following a full morning of training in the classroom, you jump from the plane at the same time as two instructors that freefall along side you just in case. It’s an accelerated training wherein you’re supposed to take care of your own business on the very first jump.
The first guy that jumped was freaked out enough that instead of going through the training maneuvers we’d been instructed to practice during the freefall portion from over 10,000 feet, he just watched the altimeter on his wrist and pulled his ripcord at the designated altitude. Worse yet, the second guy completely froze. I mean if the instructors hadn’t gotten to him and pulled his chute, he would have gone splat on the ground.
Not like it’s anything special, but I must admit that when we were flying up to altitude, the door on the plane was open and it was all I could do to not just run and jump out that door! I didn’t want anyone beside me. I wanted to see what it was like to be completely left to my own devises. However, not wanting to create trouble, I stuck to the plan. I waited and jumped as we’d trained, went through the practice maneuvers, smiled at both of my instructors, and then pulled at the proper altitude. It was still a huge rush :biggrin:
Of course I’d been getting sicker and sicker for decades wherein fatigue, pain, and depression became my constant companions. However, within a few short weeks of the onset of full-blown psychological symptoms (driven by CIRS induced physiological changes), all I wanted to do was die. I’ve been through a lot in my life, but this had me crying for my Mommy in short order. It was like being tortured on a daily basis.
Just to give you a taste, I was so wracked with unexplained fear and anxiety that I was literally afraid to wrap a scarf around my neck because I thought I was going to die from suffocation – totally bizarre stuff. I’m sure there are tougher folks than me but the psychological trauma was brutal. I may post about the symptoms at some later date.
Finding A Mold Doctor
Given all these factors, I’m sorry to say but from where I stand, moldy people sort of have to pull themselves up by their own boot straps. Luckily, we have each other and the help of a very small set of doctors. As difficult as it is to say, you sort of have to save yourself.
So while reading roughly 60 hours a week for two years, I tried a very wide range of alternative medicine. Just to give you a sense of how far off the beaten path I traveled, at one point after getting an infected root canalled tooth that had been first extracted and then re-opened to clean out a persistent infection for the second time, I went home and was filling syringes with medical grade ozone and injecting it into the roof of my mouth – couldn’t bring myself to travel the three hours for the injections and wanted to do them at a higher rate.
This may sound harsh but ozone injections have the potential to greatly aid healing and are used commonly among biological dentists. At that point in time, I was borderline psychotic with no real help in sight. I knew I had an infection in my head and given the severe symptoms, I had absolutely no qualms about treating myself. Like I said, I was way off the beaten path.
Rotten teeth aside, after traveling quite a ways down the Lyme path, eventually I started reading about mold. Within weeks, I’d set up an appointment to drive out to Maryland to see Dr. Shoemaker while he was still practicing. Later, when we parted ways (high ERMI in my house – more in another post), I worked with Dave Asprey who turned me on to some really amazing supplements. Combined with CSM, diet, avoidance, and anti-inflammatory supplements, all of the Shoemaker labs I had done went back to normal. Given what Dr. Shoemaker has said about the pair of “dreaded” 11-3-52B genes that I have, this isn’t suppose to be possible – the expectation is that dreaded types will need to complete nearly all of Shoemaker’s treatment protocol.
If I had it to do all over again and knowing what I do now, I’d asked around about physicians. People that do massage therapy, acupuncture, essential oil therapy, and the like are the ones to talk to. They will know the doctors in your community that work around the fringes and take on chronic illness patients. Every community has one or two.
Once you find an open-minded physician, go there with information in hand. This means you have to really educate yourself about Biotoxin Illness and whatever else it is that you want to discuss. Show them the evidence for why you think it may be worth it to do certain tests or try a particular treatment. Don’t be “weird”. Stick to ideas that have solid support from other doctors and/or papers written about them. For example, it’s OK to bring up issues like testing for gut dysbiosis or perhaps a trial of an anti-fungal to see if it helps but steer away from talk about auto-urine therapy and other far-out ideas.
Don’t forget to listen to what all their years of experience treating people with chronic illnesses has taught them. Working collaboratively, you’ve got a good chance at getting better. Keep records related to how a treatment went and share them at the next office visit. Remember, it’s probably going to take time and make sure to get core treatment steps for Biotoxin Illness in place – avoidance, Cholestyramine, MARCoNS, and so on. The bulk of my medical bills are now covered by insurance. Note: I’ve also had success getting a script for diagnostic lab work from conventional physicians that is consequently covered by insurance but don’t expect these doctors to travel too far down the road of treatment before thoughts of repercussions for stepping outside “standards of care” scares them into submission.
If there is a certified Dr. Shoemaker physician in your area and/or you’ve got the cash, you don’t have to be nearly as self-reliant. I haven’t checked into billing practices of the mold physicians in the lists below but maybe people will be willing to post about what they know.
Mold Doctor Lists
- Physicians Certified in the Shoemaker Biotoxin Illness Protocol
- Mold Physicians (not all follow Shoemaker Protocol)
- Mold Illness Medical Practitioners (not all follow Shoemaker Protocol)
- Surviving Toxic Mold Doctor List
- International Society for Environmentally Acquired Illness (ISEAI)
Kimberly sent in this tip. “After my husband read your blog post he said, “Why don’t you contact Hopkinton Drug, Inc in MA and ask them if they could help you find a Doctor in our state that uses them for BEG or VIP.” Hopkinton Drug was happy to help and gave me the name of the doctor that ordered the highest amounts of BEG and VIP (in my area). Hooray for progress!”
Diagnosis by Lab Work
By the way, just like with symptom clusters in the Biotoxin Illness Test, Dr. Shoemaker has statistically established a group of eight labs that can be used to definitively confirm Biotoxin Illness. Specifically, out of the thousands of patients Dr. Shoemaker has seen, every CIRS patient had four or more abnormal labs and every control had fewer than four abnormal labs. If you meet this criterion, maybe you can use this information to make your case that additional testing for the purposes of diagnosis are uncalled for – see Physician’s Approach to Biotoxin Illness DVDs
Biotoxin Illness Diagnosis Based Upon Lab Work
- MMP9 too high (normal range: 85-332 ng/mL)
- TGF-b1 too high (normal range: <2380 pg/ml)
- C4a too high (normal range: C4a: 0-2830 ng/ml)
- MSH too low (normal range: 35-81 pg/mL)
- VIP too low (normal range: 23-63 pg/mL)
- ADH high when Osmolality is low or ADH low when Osmolality is high (normal range: ADH – 1.0-13.3 pg/ml; Osmolality – 280-300 mosmol)
When looking at labs, if plasma Osmolality (not urine osmolaity) is 295 then ADH is calculated using the formula ((295-280)/(300-280))=(X/(13.3-1)) >>> (15/20)=(X/12.3) so X=9.225 and ADH should be around 1+9.225=10.225 (+/-) 2.5. However, in CIRS individuals, it’s not uncommon to find osmolality is in the high range of normal while ADH is in the lower range of normal – you have to look at osmolality and ADH as a pair on the labs.
- Antigliadan Antibodies (present – gluten sensitivity)
- Anticardiolipin Antibodies (present – associated with miscarriages, cold hands and feet, stroke, heart attack, vascular problems, and Lupus)
Update April 16, 2016
In the 2016 NeuroQuant II paper titled Reduction in Forebrain Parenchymal and Cortical Grey Matter Swelling across Treatment Groups in Patients with Inflammatory Illness Acquired Following Exposure to Water-Damaged Buildings, a different criteria is used to establish patients with Biotoxin Illness – also known as Chronic Inflammatory Response Syndrome (CIRS). Instead of Antigliadan Antibodies(7) and Anticardiolipin Antibodies(8), VEGF and Cortisol/ACTH are used. In addition, the threshold for the number of symptoms indicating CIRS is raised from 4 to 5.
- VEGF (normal range: 31-86 pg/mL)
- Cortisol (normal range: a.m. 4.3-22.4 / p.m. 3.1-16.7 ug/dL) / ACTH (normal range: 8-37 pg/mL)
(See Surviving Mold Diagnostic Lab Tests)
Biotoxin Illness Lab Panel
Note: As of January 2016, LifeExtension is offering a Biotoxin Mold Illness Panel for $425. The panel includes MMP9, TGF-beta 1, MSH, ADH, and Osmolality. Unfortunately, TGF-beta 1 is run through Cambridge Biomedical and not either Quest or LabCorp as recommended by Dr. Shoemaker in his Physician’s Order Sheet 6-20-2014. We can only hope that LifeExtension has done due diligence and that Cambridge Biomedical results for TGF-beta 1 are comparable to Quest and LabCorp.
Eventually, we’ll win. Over time, the established power structures will first reposition themselves to limit loses related to the mold factor. Once it’s clear that mold issues are here to stay, they will shift to new models that allow them to profit from fungal issues. It’s all about control. Unfortunately, barring serious social upheaval, this will most likely be long in coming. Until then, each of us has to do what we can to first heal ourselves and then help the World.
Well, what was going to be a quick reply turned into a fairly winding account. That’s what I like about writing. I never know where my interaction with others is going to take me. Thanks for the inspiration Kimberly.