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!

Tide turning regarding possible links between Vaccines and Autism??

Two blog posts you should read both involving David Kirby, author of the book "Evidence of Harm".

Huffington Post and here.   More and more "real" scientists are reporting research and their own doubts about the mainstream "consensus" science that defends the vaccine industry etc.  The threat to the vaccine industry is very real if it is ever proven that there is a link to autism.  The lawsuits would be HUGE.  So if you were the vaccine industry, would you not be fighting the idea tooth and nail?  Well they are.  Follow the money...

Mercury Dental Amalgam is toxic to the brain. Duh!!

I ran across this summary of the work of Dr. Boyd Haley regarding mercury and ties to Alzheimer's disease.  It is rather technical but if you can wade through it, you will find pretty convincing evidence that we should NEVER put mercury in our mouth!!  And if you have it there you should consider getting it out. 

But only get it out if it is done properly by someone who knows what they are doing otherwise you could make matters FAR worse by getting a very large dose of mercury in the removal of your amalgams. 
'
I had mine out in 1987 and am glad I did.  I will never know how my health would be today if they were still there but based on the data, it is likely that my health would be worse and not better.

How can anyone support the idea that permanently placing the most neurotoxic metal known to man in your mouth where it is proven it leaches into the brain and body, not be bad for you in some way?  Well duh!!

Mercury and Vaccines

Here is a good and balanced view of the controversy over mercury, vaccines and autism.  Personally, I agree with his view in general.  Also, his view as a research neuroscientist that even small amounts of toxins can cause the brain to not function well is right on. 

Another thing I think important is to spread out the vaccination schedule for the child.  We used to vaccinate on a much slower schedule.  The rise in autism appears to coincide with an acceleration in that schedule beginning around 1991.  Challenging a childs immune system with so many vaccinations when their immune system (and most other systems) are not yet fully developed does not seem wise.  Here is a more user friendly recommended schedule from a doctor Miller.

"Dramatic hearing on Capitol Hill: Members of Congress demand to know why FDA refuses to do Environmental Impact Statement"

(Posted by Patrick Sullivan Jr.)

In my inbox from Charlie Brown of Consumers for Dental Choice:

Dramatic hearing on Capitol Hill:  Members of Congress demand to know why FDA refuses to do Environmental Impact Statement

FDA was called to the carpet at a dramatic hearing on Capitol Hill on Nov. 14.  Chairman Dennis Kucinich (D-Ohio), Congressman Dan Burton (R-Ind.), and Congresswoman Diane Watson (D-Calif.) took turns insisting that FDA comply with the law by doing an Environmental Impact Statement on mercury amalgam.  A second panel of witnesses included mercury environmental expert Michael Bender, who quantified the colossal damage wrought by dental mercury on the environment, and National Environmental Policy Act expert Ray Clark, who explained why, without a doubt, FDA must do an environmental assessment of dental mercury.

Heavy Metal Mercury...Literally

(Posted by Patrick Sullivan Jr.)

In my inbox from Scott Shoemaker comes hardcore band bloodsimple's SUPER SICKO video:

That just gave me chills. 

I've never been a true metalhead, but I have enjoyed my fair share of it.  (In fact, 12 years ago I was at a metal show in Ft. Worth, TX where a piece of actual metal flew off the stage and bounced off my head.  It was awesomely ironic.)

UPDATE: I've never been a huge fan of "screamo" -- which is what this is called, for the older generation (ie. Dad) -- because you can't understand ANYTHING.  However, I do think I picked up a "1 IN 5 HAUNTED!!!!!!!!!!!!" in there.

Illness disappears by removing 14 mercury amalgams

This was left as a comment on our post regarding mercury.  I know it is a study of one person.  Rather - yet another person.  It is anecdotal evidence for those of us who have been chronically ill for a long time and that illness has resisted a quick fix.  And on top of that you have a mouthful of mercury in your mouth. 

It appears that everyone is not affected by mercury the same way.  Some seem to tolerate it pretty well.  At least it appears that way to them.  But others are affected severely and when they have their amalgams removed, numerous maladies simply disappear. Certainly helped me.  I post it unchanged as something to consider:

Comment:
I was extremely ill with depression and anxiety and fully recovered just after removing my 14 amalgams. I was better within the next 2-3 days and havnt had serious mood swings since. I think the mercury messes with your hormones and blood sugar and thyroid status adn cant be proven but you need to do what is right for you.

• Commenter name: James Leech

"Wall Street turns thumbs down to mercury fillings"

(Posted by Patrick Sullivan Jr.)

More bad news for the future of mercury amalgams.  (Which is good news for me, and anyone else against polluting the environment, harming humans, etc.)

A stunning report by Bank of America Securities advises that dental products company Dentsply, the #2 manufacturer of mercury fillings, realign its operations to sell only the resin and other filling materials.

"3 Strikes – NIH’s Chief DDS, Lawrence Tabak, Should Be Out"

(Posted by Patrick Sullivan Jr.)

More strong words in my inbox from Charlie Brown of Consumers for Dental Choice.

3 Strikes – NIH’s Chief DDS, Lawrence Tabak, Should Be Out

A major ruling by the U.S. Office of Human Research Protections shows the moral bankruptcy of the National Institute for Dental & Craniofacial Research (NIDCR) and its Director, Dr. Lawrence Tabak.  NIDCR is the dental arm of the National Institutes of Health, and has (wrongly) been given the authority to dole out millions of dollars to its mercury fillings allies to do “independent” research.  Organized dentistry’s corruption of the science on mercury fillings is so endemic that its master strategist, NIDCR Director Tabak, should be fired.  We ask you join us by writing his boss, NIH Director Elias Zerhouni.

Jigsaw Health Foundation Closes Its Doors

18 months ago I started Jigsaw Health Foundation. It's purpose was to help people who could not afford to have their mercury amalgams removed.  That was an important step in my own health recovery.  I wanted to help those who could not afford it.

We just put the Foundation into hibernation perhaps to resurrect in the future.  The primary reason?  Money.  We found money was hard to raise in general.  Many are just burned out with all the causes competing for money, myself included. 

On top of that, my daughter, Colleen Skipper who ran it, got burned out working alone in her house in Seattle.  She is a very social person and missed the camaraderie of an office with people.  She really was the heart and soul of the Foundation.  I did not feel we would be able to replace her easily.

The good news is that we were able to help about 4 dozen people.  Several of them found that removing this highly toxic metal from their mouths was life changing.  We sent an email to them and other applicants.  Following are a few of their comments.  It gave me goosebumps when I read them:

"I am sure you will get tons of emails, but I wanted to thank you for your kind words and assistance during my pre-removal days. Even though I did not use your services, I do believe in the dangers of mercury. I had my amalgams out in May and June of this year, 2007. I know it was the best decision I have ever made in my life. You played a role in that turn of my life and I thank you."

"You have not only helped those that you could, but gave us all the security of knowing there are many of us out there who have been united in hope that someone has cared and focused in on the problem, and we ourselves, can continue to make a big noise about it."

"I am so sorry to hear that you are closing. I feel so lucky to be one of the few who was chosen. Replacing my amalgams helped me so much!!! I hope to hear that you are back in business in the future."

"I am deeply sadden to read that JHF has closed. Each and every day I'm mindful of how JHF, along with Dr. Noelck, led me on the magnificent journey to regain my health. When all hope was gone, JHF was there to help save my life. Yes, I said save my life--there is no doubt in my mind that my body could not have endured much more. I was at the end of my rope and could not have held on much longer. Finding JHF on the internet, applying for assistance, and becoming a beneficiary was my Miracle! I'm living proof that the mission is on target by addressing the serious danger of mercury amalgams. At times, I find it difficult to recall just how sick I was at the time of my application. It seems like a TERRIBLE nightmare...one I don't want to remember, yet I don't want to forget. My personal crusade to is inform others of the danger of mercury amalgams. Since the final removal, I've been getting stronger every day. In fact, I will start a part time position on September 29th!! It was great to answer "no" to so many of the questions at the time of my medical exam. I'm still placing orders at Jigsaw Health."

"I am grateful for your work and efforts to help many of us who would not otherwise have gotten treatment. I am doing much better than a year ago when my cancer returned to the spine and I had surgery. I feel improved and want to thank you again for your help in this matter."

"You have changed the lives of 47 people in two years. How many people can say they have done that in their lifetime?"

"I had to write to tell you what a fantastic job Christian did in the opera premiere this summer in Italy. It was a complete miracle. A total transformation. Now he is home performing in his brother Bernard's new play, Receiving Me, which will play at The Fringe Festival from September 13 through 16th. This never would have been possible without the help that he received from Jigsaw. Thank you from the bottom of our hearts."

"I had planned on emailing you soon to tell you that I have very recently felt a big shift in my health, and I believe it is in large part due to having my amalgams removed a few months ago!!!! You have make a really huge impact in my life, for health reasons as well as feeling such generosity from people who dont even know me! What you do is truly special, and I know the others like me that you have helped probably feel the same."

"I think it is wonderful that you helped so many people. You did a GREAT job in my opinion."

"Kathleen's life continues to be complicated, yet I know what the foundation did for her has improved and ultimately has added time to her live, revitalized her ability for improvement in her mental clarity and has enriched her children's experience with their Mommy! So thankful we are!"

"Never forget how much good you have done, are doing, and will do. You probably have inspired others to do good (that you do not even know about)"

"You are to be commended for all your efforts."

"All I can say, myself, is thank you for helping me get my life back, and, I'd help more if I could."

"I am most sadden to hear of your organization fate. I was unable to get my mercury amalgams removed. However, I hope in the future I will be able to have them removed. Thank you for all the information and effort that your organization have provided me. I will pray that you will make a stronger comeback in the future."

"As you may recall, I have been looking to join or purchase a mercury-safe practice. I am looking at an office I may purchase soon. So for me, the timing has been poor. I do, however, help to educate as many people as I can, and hope to help more in the future. So please do not feel that your efforts are for naught-it has been a noble endeavor that you should be proud of. I have referred several patients to your website and recommended the book you had given me at The IAOMT meeting."

"YOU DEFINITELY HELPED ME... NOT FINANCIALLY BUT WITH SUPPORT..."

"I am so very grateful for all you have done for me. You have made a huge difference in my life and in the life of my family."

"I was disappointed to hear of the closing. I have finally made improvement in my health and energy and am feeling much better! Thank you so much for the help with paying for the amalgam removals. I was planning on making a contribution to Jigsaw Health when my finances improved. (still a long way off). How am I going to reciprocate the foundations generosity if you're closing???; You really did help me. I have Asperger's Syndrome and had not worked in a long time and didn't have the money to have the amalgams removed all by myself. Do you remember how sick I was? To write you an email would take hours because I had to lay down and rest every few sentences! I want you to know that you made a difference in my life. Last time we talked I was still very mercury toxic. I will always have Aspergers and all the symptoms but at least I don't have the additive oppressive effects of the mercury on top of that. :) "