Pat Sullivan Blog

Why I no longer recommend Dr. Shoemaker - Updated

2009-09-22T19:33:27-07:00

Update:

I am not retracting anything I say below, in fact I could amplify but won't. But there could be a few reasons to still go see Dr. Shoemaker.

First, if you need a doctor to help you get disability he could be very helpful at doing this.

Second, if you need an expert witness in litigation of a mold case you likely could not find a better advocate than Dr. Shoemaker. I recently read a 47 page letter to an opposing lawyer written by Shoemaker and it is a brilliant piece of work. and will help you understand your own illness better.

Third, if you do go see him you will have a much better appreciation of your illness and understanding of your physiology. Now it is possible to do much/most of this on your own, but it is not easy. And you need to go into it understanding that you may well end up primarily as his lab rat but you will learn a lot in the process. But a lot of it you can act on on your own.

Also, you should read his book "The Mold Warriors". Though now outdated and poorly organized, you will have a MUCH better understanding of your illness.

______________________________

I wish it were not true but I have come to the conclusion that I can no longer recommend people go to see Dr. Shoemaker. I still believe that he is totally brilliant. I believe he has unraveled much of the mystery surrounding Fatigue illness. I still believe he ought to win a Nobel Prize someday.

There is a whole lot more to this story that I will not write about here. And Shoemaker would definitely have a different side to tell. He is welcome to comment if he wants to.

In my opinion,I don't like the way he treats patients. I have been a patient for over 4 years and my fiance has been a patient (sort of) for the past 6 months. I learned to walk on eggshells around him and around his staff because they are very easy to offend and will openly get mad at you. If you ask the wrong questions, if you step a little out of their standard, methodical rituals, they will jump down your throat. I once was forced to write an apology to Ritchie and his entire staff for canceling an appointment. He made me feel like I had murdered someone. I was simply too sick to travel 2,300 miles to see him. But that did not matter. I had offended him. So in order to stay in his good graces I wrote the apology.

There is more to the story but my fiance was forced to wait 3 months before he would bother to talk to her on the phone after he had her blood results and her required history and paperwork, which they demanded she do TWICE. And then, essentially he would not treat her except very minimally even though she has the "dreaded genotype". He made her and me feel like asses in the process to boot.

I finally got fed up and true to my nature I blew up at him with several harsh email exchanges. Needless to say, I am not going to fund his study on VIP. I believe this study has a whole lot of problems with it and could have significant problems being approved anyway for reasons I won't go into here.

Yesterday, out of the blue, I got a call from a man I did not know, who was a patient of Shoemaker who told me the horror story of how he has been treated. He said, "he is brilliant but does he always have to be an ass?" He had been made to feel like dirt and had not been helped after 9 months of "treatment". It was a very sad story and prompted me to finally report here on my view.

Shoemaker's terrible bedside manner is not my main beef with him. I stomached his terrible behavior for years. But it was my feeling that he was not really treating patients in order to get them well that pushed me over the edge. Shoemaker is primarily a researcher, and God bless him for the research and discoveries he has made. The problem is his patients end up being his lab rats in my view. Whatever he is currently studying, that is what you are likely to get. He knows many things that could dramatically help a patient RIGHT NOW. But you generally won't get those things. That would mess up his research.

Most of the time he uses 1 thing at a time and that is usually the one thing he is currently researching. Patients can go for many months, even years, paying for office visits and repeated blood tests because he wants DATA about what that 1 thing does. And if you ask for the "good stuff" you are generally refused and may well offend him if you push it at all. I certainly did. It is not unusual for him to "fire" patients who piss him off. I think he would have fired me a long time ago if there were not the potential I would give him money for a clinical study.

The problem is that he is really one of a few docs who knows what he knows. He knows that too. I think he feels he can treat people poorly because where else are the going to go? That was my attitude. I would bite my tongue because where else was I going to go? I have since learned that there are others who may well be further down the road than he and are not as myopic in their view of what causes CFS+. Mold is just one thing. There are other toxic chemicals, infections, brain trauma's and heavy metals that can kick off the same cytokine storm. Shoe seems to only recognize mold for the most part.

But I realized that I did not need him. His work is published for the most part. It is out there if you look for it. The meds he uses. What they do. Clinical tests he has run. The Lab tests he uses. Virtually everything is out there. Yes, it can be very difficult to find a doctor who will take this info and work with you on it. But those docs can be found.

Also, almost all of the labs, and the meds he uses are available for purchase without a prescription. Most people who have been studying CFS and Mold etc have more knowledge and expertise than 99.9% of the doctors that are out there. I have grown very used to researching something in depth, going to a friendly, open, doc and telling him what I want to do. In most cases the doc would agree to work with me simply because he recognized I knew what I was talking about and had data to back me up.

More and more though. I simply do it myself. I order my own tests (read the posts below where I tell you where and what), and often I order my own meds from either Canada or overseas. Meds are cheaper and so far have proven to be as good. It is legal to import medicines for personal use. Many people do it. They are true generics and have been approved for use in at least one country, often many countries. Many of these will never come to the US because it simply is too expensive to get through our FDA. A problem in and of itself. I was doing well before but have since experienced additional significant improvements.

I know. I am a risk taker and many people won't be willing to do this and I would never try to convince you that you should. But I have decided that where I have to, I will take things into my own hands, research very carefully and take a risk. Fact is, we take risks with anything a doctor gives to us anyway. The statistics are not great on Doc's giving the right meds all the time. So that is me. You have to decide what to do for you.

It does not make me happy that I can no longer recommend Dr. Shoemaker to anyone. But I just don't think it is worth the time, trouble, money and frustration. And I don't believe he gets a high percentage of people well. Shame is, I think he knows how. He just won't do it. It turns out that he is a typical allopathic doctor who, for the most part, wants one drug for one disease. Shoemaker's hope was that VIP (Aviptadil) was that one med cure. Trust me, it isn't IMO! I have used it for 90 days and at best, it offers subtle help. Worse, in me and others, our biomarkers actually got worse on VIP. Shoemaker did NOT like me asking him why and WOULD NOT even offer an explanation other than to suggest I must have some exposure to mold. I have taken huge steps to make sure that is not true. And if I were, other markers that would move with re-exposure actually got better. So it made no sense and he would not even try to explain. I am not sure he knows the answer and that is why he is still researching. I appreciate the research. I do. And I don't even mind being a lab rat if he would tell me that I was one. Often I got the sense he actually could answer my question but either could not be bothered or was too busy.

I take a functional medicine view of chronic illness. You measure everything you can measure and you try to fix as many of those things as you can ALL AT THE SAME TIME within reason. Then measure again. You won't know exactly which things helped, but in most cases you will feel much better and hopefully be on the way to getting well. CFS+ is a multi-systemic illness. You have to attack it from several angles. The sooner the better. The more the better.

Hopefully, within the next 4-6 months, I will have another place to recommend. I am working on that diligently right now. I hope to be a part of bringing real help to the CFS+ community very soon.

Magnesium Supplements

2009-09-08T17:16:40-07:00

For almost 3 years, Jigsaw Health has been making an ever-increasing push in promoting magnesium supplements for overall health.

What we're finding over and over and over and over again is that magnesium deficiency shows up as so many different symptoms. And those symptoms can be relieved quite quickly and painlessly. Dr. Carolyn Dean just published an interesting story on her blog about how magnesium supplementation saved kitties by helping to relieve their owners chronic allergies.

Magnesium is really that good. It's an essential mineral, and there's up to an 80% chance you're not getting enough of it. I'd encourage you to test the "no diarrhea" formula I designed.

Obama solves the energy problem!!

2009-08-17T19:46:17-07:00

Spending only $2 Billion, President Obama goes a long way to solving our energy problem. Oops! I misunderstood. From the WSJ:

Obama Underwrites Offshore Drilling

Too bad it's not in U.S. waters.

You read that headline correctly. Unfortunately, the Obama Administration is financing oil exploration off Brazil.

The U.S. is going to lend billions of dollars to Brazil's state-owned oil company, Petrobras, to finance exploration of the huge offshore discovery in Brazil's Tupi oil field in the Santos Basin near Rio de Janeiro. Brazil's planning minister confirmed that White House National Security Adviser James Jones met this month with Brazilian officials to talk about the loan.

The U.S. Export-Import Bank tells us it has issued a "preliminary commitment" letter to Petrobras in the amount of $2 billion and has discussed with Brazil the possibility of increasing that amount. Ex-Im Bank says it has not decided whether the money will come in the form of a direct loan or loan guarantees. Either way, this corporate foreign aid may strike some readers as odd, given that the U.S. Treasury seems desperate for cash and Petrobras is one of the largest corporations in the Americas.

But look on the bright side. If President Obama has embraced offshore drilling in Brazil, why not in the old U.S.A.? The land of the sorta free and the home of the heavily indebted has enormous offshore oil deposits, and last year ahead of the November elections, with gasoline at $4 a gallon, Congress let a ban on offshore drilling expire.

The Bush Administration's five-year plan (2007-2012) to open the outer continental shelf to oil exploration included new lease sales in the Gulf of Mexico. But in 2007 environmentalists went to court to block drilling in Alaska and in April a federal court ruled in their favor. In May, Interior Secretary Ken Salazar said his department was unsure whether that ruling applied only to Alaska or all offshore drilling. So it asked an appeals court for clarification. Late last month the court said the earlier decision applied only to Alaska, opening the way for the sale of leases in the Gulf. Mr. Salazar now says the sales will go forward on August 19.

This is progress, however slow. But it still doesn't allow the U.S. to explore in Alaska or along the East and West Coasts, which could be our equivalent of the Tupi oil fields, which are set to make Brazil a leading oil exporter. Americans are right to wonder why Mr. Obama is underwriting in Brazil what he won't allow at home.

Health Care as good as Cash for Clunkers!

2009-08-16T22:35:56-07:00

Less than 2% of the auto dealers who sold cars under the cash for clunkers have been paid. And 4 out of 5 claims from those dealers have been rejected by our government for minor mistakes on the claim forms. Congressmen are now worried some dealers may go out of business.

Damn, the bureaucrats are so good let's put em in charge of health care!! The arrogance and foolishness of big government is stunning! Read the story.

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

2009-08-12T22:24:58-07:00

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

2009-08-10T20:14:15-07:00

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

2009-08-10T20:04:12-07:00

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??

Update 11 - How is VIP doing for me?

2009-07-20T21:27:11-07:00

I now have had the opportunity to try VIP. I am in the final week before I have labs drawn to see what my "mold" numbers are now. I have been on a schedule of 4 times per day which is 50mcg's per nasal spray.I drop down to 2 per day for a month and then get tested again.

I have had partial but noticeable relief of muscle soreness that was with me pretty much most of the time. My recovery from exercise is better. It seems I am also able to focus somewhat better. Hard to say. My hair grew back. Haha. VIP has done some good things for me. But I think my expectations were way too high and now I am somewhat disappointed. Before VIP I said that I felt I was pretty much 80-85%. Now I might be 85-90%. Overall, that is very good and welcome! Just not the 100% I had hoped.

The real test will be my objective numbers. Before VIP, my C4a was about 2.5 times high and my TGFb1 was about 3 times high. Other numbers were also either high or low but I won't go into those. Those 2 numbers are what Dr. Shoemaker hones in on the most. Both are inflammatory markers indicating an overactive immune function. VIP has an influence on both, keeping them in check. All part of the "deranged physiology" that Dr. Shoemaker said I, and other mold patients have.

He also once told me "you should be much sicker than you are." I attribute that to many things I learned to do along the way. The most significant of which, in my mind, is my use of low dose cortisol replacement. I write about that here.

Dr. Shoemaker is not a fan of cortisol replacement but I don't agree with him on that one. One of his findings in almost all of his patients are abnormally low levels of cortisol AND ACTH. ACTH is the pituitary hormone that tells the adrenals to make cortisol. To many docs this is a hallmark of adrenal insufficiency or adrenal fatigue. Or, more likely, it is a sign of a non working hypothalamus since it is the organ that tells the pituitary to tell the adrenals "hey, make some cortisol". When cortisol levels get high enough the hypothalamus says "Whoa, that's enough for now." I believe that in mold illness or CFS+ the hypothalamus is simply not working. It seems to be the main part of the brain that takes the brunt of the inflammation cascade. Damage is likely when someone has been sick a long time. Dr. Shoemaker and others find that with CFS+ patients, usually everything that is dependent on the hypothalamus is off. VIP and MSH both are made or controlled primarily by the hypothalamus.

So supplementing my cortisol with "physiological" as opposed to "pharmacological" doses has been a huge help to me for well over a decade. Whenever I try to wean myself off I eventually crash!! People replace thyroid, testosterone, estrogen, progesterone, HGH all the time but for some reason docs are afraid of cortisol. This is due to their experience with pharmacological uses of cortisone as in prednisone etc. But the body makes between 30 and 40 mgs per day and much more when stressed. If a mold/CFS patient is unable to make this much it makes total sense to supplement this most critical hormone!! But enough about that.

A CFS Cure? - Update 10

2009-07-20T16:51:00-07:00

When I saw Dr. Shoemaker four years ago he was just beginning to narrow in on the answer to fatigue related illness. In virtually all of the 4,000+ patients he had seen there were a host of inflammatory, regulatory chemicals and hormones that were totally out of whack. He was never taught at Duke Med school to even look for these markers but his research made him chase the rabbits where they led. And the data he was getting contradicted much of what he was taught. He told me then, "I had to learn when the data contradicts what I was taught, the data is always right!" That makes him more scientist than doctor. And it makes him rare. Most docs only believe what they were taught in med school. Even new, well documented discoveries remain a mystery to them because they don't have time to read their own journals. The only time most of them learn anything new is when a pharma rep takes them to Tahiti. Sad but true most of the time.

At the time there were two little known hormones that were showing up as "dead low" in virtually all of his patients. One was MSH, Melanocyte Stimulating Hormone. The other was VIP, Vasoactive Intestinal Peptide. Ritchie was excited but frustrated with this finding. While he could measure them and see that they were low, he had no way of supplementing them. Neither were FDA approved and thus not available to him to use. They were available for researchers only for use in lab animals but not humans. Both are incredibly important and potent. MSH still is not available but VIP is available but only to docs who know about it and they are very few.

Shoemaker first got started chasing these rabbits 14 years ago when a group of about 25 of his patients suddenly all came down with the same cluster of symptoms. They were very fatigued, had terrible diarrhea, headaches, achy joints and muscles, sensitivity to light, and had cognitive/memory issues and a host of other symptoms. Ritchie was stumped. They did not have the flu or anything else he could diagnose. One lady had diarrhea so bad she was basically dying. He tried every med he could. Nothing stopped it. Out of desperation, he thought of an old medication, Cholestyramine, used to lower cholesterol. It had a side effect of terrible constipation. He thought maybe this would help her. It did. When he saw her at her next follow she reported that not only did it stop her diarrhea it got rid of ALL her symptoms. This totally perplexed Ritchie. He saw absolutely no way this med could have stopped all her symptoms. He gave the med to the rest of his sick patients. They all got well. Made no sense to him.

He called them all into his office where he tried to determine just what they all had in common. After quite sometime, it was determined they all had only one thing in common. Each had been in the Pokomoke river when there was a major bloom of an algae called pfiesteria. Shoemaker learned that this algae produced a fat-soluble toxin that attacked the nervous system of fish and killed them. This explained why cholestyramine helped each patient. It bound to cholesterol in the bowel and prevented it from being reabsorbed. The toxin was bound to cholesterol. So the toxin was carried out of the system.

But this did not explain everything. These people were not the only people who had been in the river. Why hadn't everyone gotten sick?? That question started Ritchie down every rabbit trail where it led him. He learned that there was genetic component to CFS. Virtually all the CFS patients he saw had a genotype where their immune system failed to recognize this type of toxin as a toxin. So it did not remove the toxin. About 25% of the population has one of the 12 or so subtypes of this major genotype. He learned that the primary exposure to this type of toxin was mold. Mold found in Sick Buildings and homes where water damage had taken place. This is a very common occurrence. The 12 genotypes represent a "spectrum" of extremely bad (the dreaded genotype) to somewhat bad. Depending on your genotype you would either get really sick or only somewhat sick. Or you would not get sick at all if you did not have the genotype.

Basically, the toxin kicks off a strong immune response that starts an inflammation cascade that never gets turned off because the toxin is still there. CFS and all other fatiguing illnesses are basically like getting the flu but the flu symptoms never leave. The inflammation cascade wrecks havoc systemically. It is like having a smoldering fire that is constantly starting brush fires all over the body. Most docs go after the brush fires but are unaware of the underlying fire. Put that out and all the brush fires go out.

When this fire continues for many years, damage to the body can and does happen. The most serious of which is what happens to the brain. Particularly the hypothalamus. It controls and regulates many functions in the body. When it is not working, lots of things stop working well. It is also where most of our VIP and MSH are made or are regulated. In chronic conditions like CFS these are always "dead low".

While MSH cannot currently be replaced, there is a pharmaceautical company doing a LOT of work on it. But VIP can and it helps put out the fire and even restores some of the functions of MSH.

Chronic Fatigue Cure? - Update 9

2009-07-20T16:38:59-07:00

Most people with chronic conditions like Chronic Fatigue Syndrome (I will use CFS as all inclusive for fatiguing illness), Fibromyalgiia , Post Lyme etc. try many different things to get well. I certainly did. For 37 years I have been trying to figure out how to recover 100% of my health. I have reached a place where most of the time I feel pretty good. Not necessarily great but certainly highly functional. When people learn that I was often very sick all the while I was building two software companies (ACT! and SalesLogix) they are shocked. I learned how to be functional in spite of how I felt. I remember a several week intense effort to raise money for SalesLogix where I was a basket case. But somehow, I had learned how to separate how I felt with what I needed to do. Often I would say, "how I feel is not me. How I want to be is me." I learned to play the role of health. Only those closest to me knew I was sick.

That is the way it is with fatiguing illnesses. Many people just learn to function anyway. Others are simply too sick and they cannot do it. But I have never talked with anyone who wanted to be the way they were. Most were searching. Their relatives and friends often would pass judgment on them. "They are just lazy!" I recently played golf with a VA Doctor who openly talked of his total disdain for Iraq soldiers "who were faking their illnesses (PTSD)". I really wanted to punch him!! Almost did. When you feel really bad all the time, there is nothing else that you want except to get well.

I believe that time will prove that there is a single underlying dysfunction with most fatiguing illnesses that if corrected would cause virtually all the symptoms to disappear or at least bring a cohesive understanding on how to deal with those symptoms.

I have said for many years that the main symptom of a CFS patient is they have seen MANY doctors. Usually with no, to little help. Mainstream and alternative docs basically have few answers. There are nutritional supplements and some Rx meds that certainly can help. I was helped a lot by a regimen of many supplements and a few meds, detox and exercise. But none of these really fully the underlying problem.

Think of the underlying problem like a smoldering fire, The systemic symptoms are no more than brush fires that are continually kept alive by the real fire. Doctors tend to focus on the brush fires. They are not looking for an underlying basic problem. Doctors don't have time to step back and look at the entire CLUSTER of symptoms always found with CFS, and ask what could be causing this wide ranging systemic illness? Why do all these people have the same symptoms?

Well there is one doctor who for 14 years has searched and found some real answers. I don't say that lightly. And I have only recently begun to say it after knowing him and his work for 4 years. And hope to help him prove more of this by funding a needed double blind, placebo controlled clinical study. I hope it will prove conclusively that this entire cluster of symptoms is caused by a single underlying dysfunction. Sounds simple! It is, but it actually isn't.

The fire that is lighting fires all over the body is caused by a very complex cascade of dysfunctions resulting in one basic problem. It is confounded in that only about 25% of the population have a genotype that will be affected. And even that is not simple. There is one basic genotype with about 12 subtypes. Those 12 make up a spectrum that determines just how badly you will be sick, And getting sick depends on how much exposure you have to a very specific type of toxin made by a number of organisms. The most common is mold. The kind of mold you find in homes and building with water damage. A dysfunctional immune response to mold toxin is the most common cause of fatiguing illness.

Four years ago, when I first went to see Dr. Ritchie Shoemaker MD, there was a news team in his office. They were there doing a story trying to answer the question, "Why are people coming from all over the world, to see a Family Practice MD in Pokomoke Maryland?" People were learning that he was discovering the cause of the fire. He had not learned everything about it but he was closing in on it. And he was able to help people partially with what he already knew.

When I recently saw Dr. Shoemaker in late May, I knew he had made tremendous progress, but I was not prepared for what he said to me. "After 14 years of chasing every rabbit trail, and learning many things to help people, I have finally started to use a word I never really expected to use...CURE".

Now you would have to know Shoemaker to understand how significant a statement that is. He is a "by the book" doc, with a healthy skepticism. He also suffers from this dysfunction. In fact, he has the exact genotype as I do which puts us in the worst 3% on the spectrum of biotoxin illness. It also means he and I are related! More in the next post.