Pat Sullivan Blog

Update 14 - Beginning to get well from Mold Illness- Updated 8/27/09

Thankfully this is my last "update" to my Mold and Brain Trauma chapters which you can find here.

I believe that most "fatiguing" illness is caused by mold toxins.  These include the obvious, Chronic Fatigue and Fibromyalgia. But there are many other labels that are being put on people by doctors who have to quickly diagnose someone and try to do something to help them.  Epstein Barr, Cytomegalvirus, Depression, ADD, ADHD, Generalized Anxiety Disorder, Irritable Bowel, Migraines, Rheumatoid Arthritis, Hypo-Thyroid, Candida, Mercury Poisoning, Allergies, MS, ALS, Lyme, Auto-immune conditions are labels that can be placed on you for a diagnosis when mostly, the real cause is actually mold toxins.  Mold toxins that affect people with genetically impaired immune systems that fail to recognize the toxin as a toxin.

Some of the conditions I mentioned above could actually ALSO be present.  Some of them were in me.  But it turned out with me that mold, and the systemic damage it caused was the big underlying cause.  I also believe that the Traumatic Brain Injury (TBI) I sustained as a Soph in college was a confounding, co-morbid condition that makes the mold illness worse or more difficult to treat.  I ALSO believe that it was a VERY good thing that I recognized in 1987 that having 12 mercury leaching dental amalgam fillings in my mouth probably was not a good thing.  My health definitely became better when I had them out.  But they were NOT my main problem.  I consistently talk to people who think Mercury is their main problem who end up having a severe mold problem.  They should still deal with the mercury but MOLD is the real problem.  The problem really is the total body burden of toxins, mold being a particularly bad one for certain genotypes.

In the last update, I gave you the basics on how to determine if you have a mold problem and how to learn where you are being exposed.  Now let's deal with some basics of how to get well.  I am not going to go into depth because to really get well requires a doctor who knows what he is doing.  Unfortunately there are not many right now.  The need is so great my next venture may well be to start a network of clinics to focus on nothing but this.  It has actually been something I have been thinking about for over 6 years.

This is NOT medical advice!  I am not a doctor.  I just play one on TV and I have stayed at a Holiday Inn Express!

1. Get away from the mold!  Easier said than done!  If you work in a moldy building and cannot work from home you have a major problem.  If you live in a home that is moldy, it is not easy to move. Stay out as much as you can.  Sleep outside if you can.  Move if you can.  I know of people where most of the family was sick from a very moldy house where they simply left the house with not much else other than the clothes on their back. 

If you can gather enough medical data and are willing to spend the money you can sue your employer and the building owner but most of the time this is a total waste of time.  If a bunch of people where you work are sick, a class action suit, or the threat might get some attention to the problem.  You would have to have a medical expert on mold and there are only a few and they typically get involved only in big cases.  Mold is just not yet widely recognized in health and science circles as being something that serious.  This is due to the fact that 75% of people don't have a problem with any level of exposure to mold.

2, Re-mediate if possible.  If you have a severe problem with mold this can be impossible.  Mold is NOT killed by bleach as many believe. In fact, there is some science that suggests bleach can make things a lot worse!   Small amounts may be eradicated by the using highly concentrated fogging with hydrogen peroxide.  I have not proven this.  I am only trying it because my mold guy convinced me he has great success with it.  We will see when I redo an ERMI test in my home. (I don't have a big mold problem in the house.)  Read Leviticus 14.  If this isn't a description of a mold problem and what to do about it I don't know what is.  When mold takes over, it cannot be re-mediated.  It can only be torn to the ground and burned.  If you can find that it is isolated, you can tear out all the drywall, studs and replace them.  That is what I had to do in the home I lived in for 13 years in Scottsdale.  It cost a lot to do but fixed the problem.

3. Become a Mold Warrior.  Get Dr. Shoemaker's book called "The Mold Warriors" and read it. It is not an easy read and not very well written but the chapter on the Biotoxin Pathway is great.  There is a LOT of info there but you will get a much better picture of what you are dealing with.  It is somewhat outdated as Shoemaker is always learning many new things.  You will also find my book "Wellness Piece by Piece" useful even though I don't cover mold there.   I did not know about my mold problem when I wrote it.  But when I first worked with Dr. Shoemaker 4 years ago he said to me, "You have a very deranged physiology and you should be a whole lot sicker than you are."  He attributed it to all that I had learned about nutrition, exercise and other things that helped.  Recently he said to me, "The people that come in here who take 30 different supplements are always better than the ones who don't.  I just don't know which things help and which things don't."  I will make some suggestions on these below.

4. Take Cholestyramine (CSM).  This is an old med that is not used much anymore.  You should be able to find a doc who will give it to you even though they won't likely understand or agree with you about mold.  The type of toxin mold (and some other organisms) produces is fat soluble.  It is carried throughout the body and brain by cholesterol.  Cholesterol is considered very valuable so the body has a mechanism for reabsorbing it before it passes in feces.  So the toxin simply keeps being recirculated.  CSM will clear most, if not all of the toxin in 3-5 weeks. 

I don't like the standard Rx for CSM as it has aspartame in it. CSM can also be harsh on the GI and may even cause gallbladder problems so be very careful.  I use a compounded version of CSM from Hopkington Pharmacy at 508-435-4441.  Your doc can order it.  Often insurance won't cover the compounded version unless you make a big stink about it.  Tell them you are allergic to aspartame.  Since it is a neurotoxin you actually are! CSM is hard enough to tolerate compounded, but it is much better than the the off the shelf version.  Two side effects.  Constipation and Acid reflux.  Very important: Add psyllium husk to your CSM.  It will help dramatically with the side effects and studies show it actually dramatically improves the the effectiveness of CSM.  I also take extra  Jigsaw Magnesium and Tums if I get some acid reflux. That works for me but may not work for you. You need to try to get 3-4 doses down on a relatively empty stomach. If you have GI trouble take less fewer times and see if you can build up gradually.   It is possible to get a little worse for a few days before you start feeling better. Usually, 4-6 weeks is enough and you can retake the VCS test to see if CSM helped. If you get REALLY, REALLY worse STOP!  It could mean you really have Lyme disease.  Lyme produces the same kind of toxin but before you use CSM you need to use a med called Actos to bring your C3a levels down first.

5. Treat your worst symptoms.  This will go against the grain for a lot of people.  It did for me for many years.  But once I understood what was going on inside of me was physiological, and I was not crazy or in some weird spiritual battle, I felt better about doing something real about my symptoms.  It is far better to treat the underlying causes and if you stick with it, you can with most mold illnesses.  But in the meantime, you NEED some relief.  Very common in CFS+ mold illness is insomnia, weird anxiety, ADD and depression.  Get HELP for these.  If I break my leg I use a crutch until it heals. Until you fix the damage done by mold, especially if you have been sick a long time, you need help until repair can be accomplished, if it can. 

Sleep is critical.  You HAVE to know you can sleep without worrying about it.  You can try natural things like Valerian, 5HTP, melatonin etc.  They did nothing for me but may for you.  I like the recommendations of Dr. Paul Cheney.  Cheney talks about the benefits of Klonopin for CFS patients here.  Klonopin does many things for moldy people.  It protects the brain from much of the inflammation cascade. It blocks glutamate which gets released in high quantities with the cascade causing lots of symptoms and damage.  It helps you sleep.  It calms the weird, sense of doom and anxiety that is common.  For me it was a life saver! 

For sleep it is best to take small amounts of a few things rather than a lot of one thing.  It keeps side effects and dependency down.  I would recommend you use whatever it takes to get 8-10 hours of sleep. It is absolutely CRITICAL that you SLEEP every night no matter what it takes.   Klonopin, Trazadone, Ambien, Lunesta, Seroquel are some to try.  The 3 that worked for me are Klonopin 1mg, Trazadone 100-200mg and Seroquel 50-100mg. 

.5mg of Klonopin twice during the day was great for anxiety and I used Pristiq for depression.  It worked great too. Vyvanse is the new standard for ADD.  I don't take this currently but I liked it when I did.  I work with Dr. Charles Parker with my meds.  He uses NeuroScience testing to track progress.  He mixes Amino Acid therapy with meds which works much better than meds or amino acids alone.  There are a lot of advantages with this approach.  See his website here.

Basically, what I am saying is, don't limit yourself by suffering with these symptoms when you don't have to.  You can drop the meds as you get better.  Some people recover just from using CSM so you may not need the meds at all.  But most don't fully recover just from CSM.  The key is to get as FUNCTIONAL as you possibly can while you work to understand all the things mold has broken and find ways to fix them.

6. Fix your hormones - Because the immune and inflammation cascade hits the hypothalamus really hard your hormones will be off.  Check your sex hormones and supplement all of them to bring them to normal levels.  Creams and pellets work the best.  Check your cortisol, DHEA and ACTH.  They are probably all low.  For me this was a really big deal as I have written about before here.  I am hypo-adrenal.  I don't make enough cortisol.  So I supplement in very low doses. 20-30mg's of hydrocortisone (NOT Prednisone etc.) which is less than the body normally makes on it's own.  Thyroid is a biggie too.  Get the book "Stop the Thyroid Madness".  It does a great job of covering BOTH thyroid and adrenals.  They are tightly related.  This can help you big time!

7. Allergies - I hate allergies cause they are always something I like to eat.  For me, milk is the biggie.

8. Supplements that can help (short version. For more info on these use Google)  It's the inflammation stupid!  Since you are dealing with an inflammation cascade, supplements that help with controlling inflammation will help.  My favorites are Vitamin C 3-6 grams in a sustained release formula (soon available from Jigsaw Health!).  Broad spectrum Vitamin E with tocotrienols 400-800 IU.  Vitamin D3 5,000-15,000 IU.  This is actually a very biggie.  I use the higher amount because it is extremely anti-inflammatory and has many, many other systemic benefits.  It is NOT toxic.  Your body makes way more than this in an hour in the sun.  Geronova's Na RALA 600mg.  DHEA 20-40mgs.  High dose Fish Oil.  2-3 grams of concentrated, purified (from mercury) fish oil. I prefer high or even pure DHA for both brain and anti-inflammatory reasons.  I also like Borage Oil to get DGL. Jigsaw Magnesium with SRT.  Sustained release Mag is very calming to the muscles, to inflammation and to the brain. Ginkgo 200-300mg. Vinpocetine 20-40mg.  Pycnogenol 200mg.  These help many things in the brain and blood flow as well as being protective to the brain and blood vessels. Ubiquinol 100mg.  Jigsaw Activated B with SRT, Glycine Propionyl L-Carnitine (GlycoCarn) 2 grams.  BCM-95® Bio-Curcumin®. I don't take this because it messes up one of the meds I take.  Not sure which one.  But if you can take it is highly anti inflammatory.  Watch for this because some supplements will interfere with meds.  I seem to have run into all the interactions possible!

9. Exercise - A lot of people are so sick they can't even think about this.  But if you can, it will help you a lot.  I like to do intervals.  Jog, walk, sprint, walk, sprint, jog for about 30 minutes 3-5 times per week.  Walk slowly if that is all you can do.

10. Other Meds - Now it gets even more tricky.  To really deal totally with the effects of the immune and inflammation cascade there are a number of possible interventions that Dr. Shoemaker has studied.  I have talked about VIP which he is studying now.  VIP has many effects in the body. I take it and it helps but it is not a magic bullet for me unfortunately.  There are others like Procrit, Tadalafil, Cozaar, Actos.  All used off label.  I would not recommend any of these without working with a doc who is opened minded and will learn what you are trying to accomplish and why. The studies on the first two are on Shoemakers site.  Cozaar is a BP med that works minimally to bring down BP but it is GREAT at bringing down TGFb1 which is a killer cytokine.  Here is a summary I put together from research I did.   Download Benefits and Means of lowering TGFb1 and Endothelin

For the brave at heart, all these meds can be bought as either brand or generics without an Rx if you research them long and hard enough.  But I ain't telling you where.  I don't recommend you do it, I only wanted you to know you could.  It is legal in the US to import meds for your personal use.  If you are desperate and willing it is up to you.  Sometimes it simply is impossible to find a doc who will treat you.  Personally there are a number of things I don't agree with Shoemaker about regarding  his often painfully slow process that means you might suffer for many more months before you ever get to something that will actually help you.  He should not do this when he knows what he can do to help.  But it is his process and he refuses to vary from it.  Perhaps for most that is a good thing.  For me, sorry, I have suffered long enough to serve as a lab rat!  Hopefully, there will be good alternatives in the near future.

I fire a lot of bullets at my problem and it works for me.  My blood markers for mold illness are all improving.  I intend to keep at it till they are as normal as they can be.  Maybe then I will know what it is like to feel totally normal again.  I am close.  Very close.  You can be too.  Get after it!

Update 13 - How can you learn if you have mold related illness

I have had a few people email me and say, "Alright already, tell us the answer."  I will attempt to do so in this post and the next.  How can you learn if you have a mold related illness?

Based on everything I know now here is what I would do in this order:

1. Don't laugh, but measure the wingspan of your arms from fingertip to fingertip.  If your wingspan is longer than you are tall you have a very high probability of having a genotype that is mold susceptible, especially if you are from Northern European descent. 

2. Go HERE and take the online test.  It costs $20 to take the initial test and is well worth it.  On the VCS test DON'T guess.  If you can't see the contrasts hit the "I don't know button."  We all want to pass tests and we were taught to guess if we don't know the answer.  That can mean you pass this test when you actually are sick.  The VCS test works because the optic nerve goes directly into the brain.  Mold toxins are neurotoxic and often affect the eyes first.  A high score here is HIGHLY indicative that you are sick from mold exposure.

3.  Get your genotype tested.  The test is available two ways.  First through your doc where you might get reimbursed by insurance, but you have to convince your doc to give you a test he knows little about.  The test is available from LabCorp.  The test is called an HLA test.  The Test # is 012542.  The DX codes for the test are 279.10, 377.34, 279.8.  OR you can order your own test from here .

4. When you get your test results back refer to this document, Download HLA Test Results  to figure out what your genotype is. The document has 2 pages.   It can be a little complicated but you can figure it out.  You can either have one or two bad alleles.  When you translate it refer to the 2nd page of the document to see if your genotype is on the list.  The 2 worst genotypes (Shoemakers "dreaded genotypes" are 4-3-53, 11(12)-3-52B.  People with Chronic Lyme Disease tend to have 15-6-51 or 16-5-51.

5. While you are at it you might also want to test your VIP and MSH levels. Those are the two I would probably test as they will confirm that you are feeling bad because both of these powerful peptides are either very low or can't even be detected (as they were in me.)  If you want to run all the tests and have a doc willing to work with you, this document Download New_Biotoxin_Lab_Order_List_rev3  lists ALL the tests that Dr. Shoemaker runs.  And here is the document  Download Lab result ranges  that has the ranges that he looks for for all these tests.

6.  Now keep in mind that most doctors won't know what most of the tests are since they have not commonly used them.  But these are all tests that are commonly available from the Labs listed.  Your insurance company won't recognize most of them either.  

7.  Find out where you are being exposed to mold.  Thankfully you don't have to tear walls down etc to find mold.  There is a great new test (ERMI, Environmental Relative Mold Index, developed by the EPA.) where a sample of dust is collected from your carpets, drapes and furniture.  Information about this test is here and here.  Now it is possible to buy this test online, collect the sample and send it to an ERMI lab yourself.  I chose not to do this.  The more I learned I felt that getting the test done right was more important than perhaps saving a few dollars.  By googling "ERMI" and "Mold" you will find local mold companies.  Be careful!  Not all the companies found will even know what the ERMI test is much less know how to do it.  You want to find someone who KNOWS the test, and uses it regularly.  In Phoenix I have a good company that I work with and recommend. They did a great job, charged $500 and I could tell they really knew what they were doing.  They also did a bit of remediation and used a process using concentrated Hydrogen Peroxide fog that hopefully killed what little mold my house did have.  I have a vacation home in Flagstaff and could not find a mold company who knew about the ERMI test.  But one of them knew a professor at NAU who managed all the buildings on campus who regularly used the ERMI test.  I contacted him and for $600 I had the test done for that house.  Thankfully it was VERY clean.  I also had Jigsaw Health's office checked (pretty moldy!) and one of my daughters houses as well.  (Also moldy)

8.  One thing to keep in mind is that if you have a bad genotype, your children have a 1 in 4 chance of having that same gene.  If you have two, they definitely have one or both of yours.  

Next post I will tell you what you can do to begin to get well,

Update 12 - Mold causes more illness than you can imagine

Dr. Shoemaker thought I would be interested in one of his patients so he email introduced us.  She is a Dr. of Psychiatry.  Let's call her Gale. 

Gale had a thriving practice with a few other docs.  Her daughter got very ill and Gale finally traced her problems down to mold.  Her daughter became a patient of Shoemaker.  During the process of learning Shoemaker's approach to diagnosis, testing and treatment of mold illness, she realized that her own deteriorating health problems were likely related to mold as well.  She discovered that the building where her practice was located was very moldy. 

She was fascinated by Ritchie's discoveries.  She reasoned, "If 25% of the population has a genotype that makes them very sensitive to mold toxin, I wonder how many of my own patients have that genotype."  She set out to test 100 of her 500 or so patients.  She was getting sicker every day though.  She eventually could not work anymore especially in that building.  So she was able to genotype only 21 of her patients.

Now lets do a little review here before I tell you her results. 

The "dreaded genotype" of which there are 2, represents less than 1/2 of 1% of the population, or .005%. There are several other genotypes that are also sensitive to mold but less so than the "dreaded".  In total, 25% of the population has one of those genotypes.  It is more prevalent in people of Northern European descent. 

All 21 had a genotype that was mold sensitive. Over 60% had one of the dreaded genotypes. Some had more than 1 moldy genotypes. These patients had psych issues ranging from severe depression to schizophrenia.  Statistically, this is off the charts.  It stunned Gale that 21 of 21 were likely ill with the neurotoxin produced by toxic mold that is common in homes and workplaces.

I asked her if she had been able to treat them with Shoemaker's protocols if they would get well?  She said she did not know but could not help but think they would at least get a lot better.  The problem is that when you are exposed to mold for a very long time and experience the inflammation and immune cascade that results, it is possible to have actual damage to certain brain areas, particularly the hypothalamus. 

It has to make you wonder though how many people have a certain diagnosis who are really sick because they live or work in a moldy place.  More and more, I am getting the opportunity to talk with people who are sick chronically.  I am finding that a very high percentage are sick because of mold.  Many can point to a certain time when they got sick when they moved into a new home, or changed jobs moving to a new office.

The trouble is, most often you can't see it or smell it.  When you can smell it or see it you know it is VERY bad and has taken over.  But it takes far less mold than you can see or smell to make you sick.  And it being a new home or office doesn't assure you of it being safe.  A brand new house right across the street from where I used to live in a very nice area was torn completely down within 2 years of being built because it was filled with Black Toxic Mold.  And this is in AZ where it is VERY dry.

Almost 50% of the population has some kind of chronic illness.  I think many of them are sick with mold and don't know it.  How about you??