Pat Sullivan Blog

Reply to a Shoemaker Patient

Well, I know I haven't posted in like, FOREVER.  Fortunately for me I have felt really healthy for a long time and have moved on to other passions.  Like doing my 3rd CRM startup.  ACT! and SalesLogix were great but I think Contatta  is going to be the best and biggest thing I have ever done.  And for those of you interested, my supplement company Jigsaw Health is rocking!!

I was amazed when I just checked back into the blog here.  I still get several hundred readers per day with over 350,000 readers since I started years ago.  Pretty amazing to me.  I hope you all continue to find pieces to your health puzzle here.

I thought I would post an email from and my reply to someone who wrote to me.  Perhaps some of you would find it useful.  Here it is:

 

Dear Pat, 

I apologize in advance that this is so long, I tried to summarize but it is so hard to make this brief.  I have been wanting to write you for a while now for advice, since you and I have so much in common, with the exception that you have solved your health problems.  I am suffering poor health related to one, more or all of the following factors: mold exposure, candida, and amalgam fillings.  I am also a frustrated Shoemaker patient and have the dreaded multisusceptible genetic type.  I have never felt comfortable about ruling out lyme as a possible factor either as I live in an area where tick bytes are common.  The next four paragraphs are background information and then I want to ask you for some specific advice. 

I have been suffering with increasing symptoms since Feb 2010, when we had water damage in our home  I have all-over joint and muscle pain, burning sensations in my sinuses and skin (neck/back mostly), a feeling of pressure in my head, stiff neck, brain fog, fatigue, mold and chemical sensitivity, a fungal rash all over my groin and anus, and scoriasis.  I have also lost 65 pounds and have some serious gastrointestinal problems.  

I believe mold exposure is the primary cause of all this, and I am committed to getting into a mold-safe environment but its been very difficult to do.  We left the water-damaged home in August 2011 (after spending thousands trying to figure out where the mold was--and we never did) for a new home but made too many mistakes.  Not being a Shoemaker patient at the time and not knowing about ERMI, I hired someone to mold test our new house who declared the house mold-free.  But the house did have some issues in the basement and ductwork combined with not realizing how badly contaminated the things we brought with us really were, I have problems in the new house as well.  We are selling again and still looking for a clean place to buy or rent and are going to leave everything behind.  Thank God, my wife and two young daughters are not affected by mold.  But I am so sensitive to mold and chemicals that every place we look at I have some type of reaction to.  

I also am getting exposed to mold at work making things even worse.  Things are tough at work because my health has left me unable to perform like I did in the past, and they are not sympathetic to my problems.  I had to do a secret ERMI test because they would not allow me to do one and results show it is not a safe place (ERMI 8).  Shoemaker has advised I find a new job, but now I basically need to replace everything (except my family) in my life: my house, all my belongings, and my job.  Thank God I am still working at this time--it would be a disaster if I did lose my job because of all the money this is costing me to try to solve.  

Like a lot of people I'm at an impass with Shoemaker.  I have done cholestyramine for quite some time but could never tell if its was helping me or not.  He treated me for a MARCONS infection of the nose with Rifampin and oddly my head started to clear up, making me more suspicious of my lyme theory, but I've tested negative for lyme multiple times and he doesn't buy into this theory.  He wants to give me VIP but won't until my home is less than ERMI 2.  Its only an ERMI 2.08 but I've again spent thousands trying to lower the mold, wherever it may be, and have been unsuccessful.  Oddly most of the things he checks are all normal.  MSH, VIP, VEGF, cortisol, all normal, and I passed my VCS test.  The things that are abnormal are high TGF-B1 (ranging from 4,000 to 10,000), high C4A (ranging 4,000 to 8,000) and an abnormal mr spectroscopy.  This makes me suspicious that perhaps mold exposure was not my biggest issue and that fungal infection/amalgams are a bigger issue but he has no interest in the effects of amalgam fillings and candida/fungal infections.  I had six amalgam fillings in my mouth when this all started and had them removed in July 2011.  My fungal rash started sometime in 2010 and has gotten worse and worse, and I know that I'm receiving a "mold exposure" from inside of me as well. 

The specific advice I would like to ask:

1) I am so sensitive to mold, and becoming more sensitive, that so many places I go I can smell and react to mold.  Will this improve after I get my fungal issues under control?  Again I am committed to living (and working) in a mold-safe environment but so many places I go--friends and family houses, public places, restaurants, all smell so moldy to me and I hope this sensitivity will improve once I get everything under control.

2) I have tried every antifungal there is, natural (Pau D'Arco, Garlic, Oregano, Grapefruit Seed Extract, Caprylic Acid, etc.) and prescription (Nystatin, Diflucan, Lamisil, Ketoconazole, Sporanox).  Diflcuan worked the very first time I took it but I did not realize that I would need to stay on it a long time and when I went off of it the fungus came back with a vengance.  Do you have advice for fighting candida? My rash in my groin area has always been my test if my candida was improving or not.  Are there any tests that you know to quantify how bad a candida problem is?  Is there a link between mold exposure, fungal infection, and the mold/multisusceptible genotype?  

3) I had my amalgams removed but everytime I try to chelate with DMSA/Alpha Lipoic Acid, it flares my fungal problems so bad that I end up stopping.  Any advice?  Do you recommend any heavy metal tests to see how badly I need to chelate?  I do go to an infrared sauna once or twice a week so I am at least getting this type of detox.  I was also going for Vitamin C/glutathione IV's which always help but I had to cut back because of the cost.   

4) I have the ZRT Lab test in my possession but haven't done it yet.  I will be interested to see what it says considering most of things Shoemaker checked were normal.  I also see that Losartan can help with TGF-B1 and Intuniv can help with blood flow to the brain--do you have sources for these?  Do you know of any doctors in the Pennsylvania area that I could go to that might prescribe these?   

Any help you can give me I would appreciate, I'm so glad you were able to regain your health and your life and I would love to do the same for the sake of my family.  I have not ordered your book--but if it gives insight on any or all of these topics I will order it as well.  

Thanks,

XXXXX

 

My reply:

Dear XXXX,

It sucks being sick!  I know the feeling so well and empathize with you.  But you can get better!  I assume you have read my book?  And the 2 additional "chapters" on my blog?   

What strikes me when I read this is that as I look back on my own journey I realize that there were times that I ASSUMED I knew what was wrong with me but even after a long effort of treating it in a way that OUGHT to have helped me, I wasn't helped.  Whenever that happens one HAS to go back and assess whether or not the diagnosis is correct?  Could it be something else?  Is there a better approach?  Has there been some damage done that simply is permanent and nothing I do can fix it, but perhaps there is a way I could still feel better in spite of it?  Unfortunately, there are VERY few docs who do this for you or even have the time or interest to do so.  It pretty much is up to you.  Pretty scary to be your own doc at times but you really have little choice with chronic issues.  If you can find a doc who is good at this you are blessed!!

There are clues for sure in what you share.  The fact that Diflucan "worked" is certainly a clue.  And yes, I had to be on it a long time.  But at the end of the day Candida seemed to be a sub-issue. Getting my amalgams out was a big deal and I think detoxing Hg over the long haul helped too, but I am not certain about that.  On-going mold exposure is a big deal, but the fact that CSM does not seem to help at all is puzzling.  It should help some!  But you could be being exposed faster than you can detox so perhaps that is why it is no help.  I had the same issue of mold at home and work.  Fortunately, I was able to change both.  BUT you have to keep working and changing jobs probably is hard in this economy.  Shoemaker always just says change your job as though that is easy.  

You say Vit C and Glutathione IV's help but are expensive.  Indeed they are.  Jigsaw's sustained release Vit C can be somewhat like an IV in that you can take pretty high doses w/o side effects and is pretty cheap.  Transdermal Glutathione is also available from several places. 

Lyme?  If you have tested negative several times I would rule it out.  It would be hard to get the needed Rx antibiotics prescribed and paid for with a negative test anyway.  

Here are some thoughts: 

Have you ever tried spending most of your time when you are at home outside? Like when you sleep? And take CSM during that time?   Perhaps if you can shorten your time of exposure just enough you would see some results from CSM?  CSM helped me a lot.  And still does if I ever take a "hit" of mold from some place.  

How old are you?  Have you been tested for testosterone levels?  DHEA?  Thyroid? The ZRT lab test is going to test what?  All of these?  Cortisol levels 4 times during the day?  One blood test for cortisol is not conclusive of much.  And typical Thyroid testing (TSH) is virtually meaningless.  (See "stop the thyroid madness" book.)  If you have been sick a long time, damage to the hypothalamus is likely and is usually permanent.  This means that you would be hypo everything.  Supplementing cortisol, thyroid, testosterone, dhea could help a LOT!  But with your MSH, VIP and VEGF levels normal it suggests the opposite however I have found those tests to be iffy.  They go up and down a lot for no apparent reason. I would NOT take Shoemaker's VIP Rx if my level was normal.  Only 1 person out of about 10 that I talked with (plus myself) who took his VIP, felt better with his VIP and ALL of them had tested with essentially 0 VIP. IMO it just does NOT work.  Very expensive too.   I could be wrong and hope there are a lot of people he is helping with his VIP, I have just not heard from them.

Shoemaker's tests for and diagnoses from markers that are pretty esoteric so I am just not sure I believe him.  C4A and TGFb1 goes all over the place from people I have talked with and been tested repeatedly by Shoemaker.  I know people who felt the best when their levels were off the charts and terrible when they were low!  So I just don't know I trust his stuff.  Plus, there is essentially only 1 lab that tests for these and that is experimental.  Very unreliable in my opinion.  I even know two people who have the "dreaded genotype" who have no symptoms at all!!  So, I think Shoemaker definitely is seeing SOMETHING and has made some correct correlations, BUT I don't think he has unraveled this thing yet. Certainly from feedback I have from patients of his, he certainly does not make many of them feel better! Mostly they end up totally discouraged and some even just give up.   

Having said that, high TGFb1 levels are absolutely known to be a big problem.  Curcumin (http://www.epic4health.com/cuul500mgena.html) is proven to bring down TGFb1 levels dramatically as well as a host of other things that Shoemaker measures and talks about.  I take a gram per day.  My company Jigsawhealth is getting ready to intro a Curcumin product.  Losartan and Actos (both Rx but available internationally w/o an Rx) both can help a whole lot with most of the inflammatory issues from mold. Curcumin probably does just as much as both of them and certainly is safer and easier to obtain and is cheaper too (unless you can get an Rx for them and you have insurance.)  

Testing for Candida is tough but the best might be an OATS test http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive can be insightful in many ways.  Arabinatol level is the key marker.  

Have you ever taken a blow to your head as in a car accident or anything?  Read my blog on that.  It turned out to be the MOST significant issue for me and I did not learn of it until after I wrote my book. What psyche problems do you have?  Depressed, anxiety, ADD-like, insomnia?  These are very typical and we usually write them off as "situational".  "If I could just get rid of Candida, Mold, Hg poisoning etc I would not feel so bad."  But they often are NOT situational at all.  

The fact you have low blood flow to the brain and are asking about Intuniv is interesting.  I take guanfacine compounded as sustained release because Intuniv just costs too much and is nothing more than very cheap quanfacine.  It is a very simple med and has helped me a lot.  I had proven from a SPECT scan that I had very low cerebral blood flow to the pre-frontal cortex.  Gingko helps here too.  I fought psyche problems for decades before I finally quit my resistance to treating them with Rx meds after I learned I had sustained a traumatic brain injury (TBI) in a severe whiplash car accident I had back in college (37 years earlier). Once I got the mix right (not easy) I felt TONS better!!  Do immune system problems from Candida, Hg, mold, cause one to not sleep well, or does not sleeping well cause the symptoms?  Chicken or egg! 

Basically, a combination of my TBI, amalgams, mold etc ALL worked together to cause damage to my hypothalumus that I could do little about.  Certainly ALL the things I learned to do along the way definitely HELPED me, but they were mostly helping to control the issues, not CURE them.  So I have focused on doing many of those things (exercise, good food, supplements, detox, avoiding mold and lots of chemicals etc) but my main focus has been on supplementing ALL the things I learned I was hypo in AND I took a few Rx meds that helped me sleep much better, not feel depressed and anxious for no reason at all.  It seems once you have sustained some significant "hits" to your various systems, there is simply damage and nothing is going to "cure" it short of a miracle.  There is no miracle substance or med that will do it all.  It is a multi pronged effort it seems.  You certainly can get and FEEL a whole lot better!!!  And you should try to do BOTH!!!

At the end of the day you HAVE to have help managing symptoms as best you can WHILE you try to unravel the real puzzle pieces.  The 2 biggest things for me BEFORE I discovered my TBI was to take a med to almost totally relieve the weird anxiety I ALWAYS felt, and low dose hydrocortisone for my very low adrenal function.  They were HUGE.  Knowing I had some control over how I felt was liberating in and of itself. It gave me hope I could unravel more stuff.   Shoemaker won't do either one.  But you can find a doc who will if you look hard enough.   

I wish there was a magic bullet I could tell you but there just isn't one.  But there are bullets you can discover that can help you get better and feel better.  Hope this helps some.

 

What I do to get and stay well from mold damage.

It has been way too long since I added to my blog here.  I am sorry I haven't but my interests are elsewhere AND for the most part I feel great!  So I don't research as much.   I still get lots of hits on the blog and am glad people find the info useful in their recovery from chronic illness.  I recently received an email that asked great questions and my answer to it seemed blog worthy.  The two emails are long so you have to wade through them. I have changed some things in the email to me just to hide the identity.  Hope you learn something useful!   I am sorry that Typepad for some reason simply will not take my paragraph breaks in my reply.  

 

Hi Pat,

I was reading your blog last night but couldn't not find any recent entries (past 09'). Are there any? I'm also a patient a Shoemakers (started in ) and have been on the CSM for 2  1/2 weeks.  I would totally agree with your remarks on his bedside manner (which doesn't exist).  It is most certainly his way or the highway. I have the dreaded genotype 11/3/52B  and low msh-6 (I sleep OK, but it's a very non-restorative sleep), low vip-7, and ADH and Osmo are out of sync causing the constant dehydration. My TGF-B1 is slightly elevated @ 3320 but my C4a and C3a are good-as are VEGF and MMP-9. Shoemaker mentioned patients buying MSH and taking it. Are you aware of this or have you had any experience with it?

The CSM was starting to work pretty well but then I went back to drinking a couple cups of coffee per day and today feel most of my symptoms back. Of course I will stop the coffee pronto but I think I would feel a lot better if I could raise my MSH level which Shoemaker said will not happen with my genotype. Guess he doesn't believe in a positive attitude.

I got the ERMI test back on my house and it's at 7.21-not so good. I just moved last Oct and do not want to move again. I've been dealing with these symptoms for years but only recently put it all together.  Do you know if infrared saunas help to detox the biotoxins?  I wanted to see if you had any personal experience with the infrared saunas.  

I exercise as much as possible as I think it can only help. I 'm in pretty good shape.  Shoemaker thinks that has helped me otherwise he said I would be worse. Thanks for all the helpful info you have posted and if you have any more recent updates or answers to my questions I would really appreciate any and all help and info.  Did you find VIP helpful? I don't know if Shoemaker will perscribe that for me before I get house remediated. All the best...

 

 

Dear ________,

No I have not added anything since then to the blog.  I basically got tired of writing for it and had other things to do.  I have thought about it though so that should count for something!  :-)

I am aware that some are taking MSH under the name Melanotan 1 and 2.  Not sure which they take.  I took Melonotan 1 for awhile a few years back and all I got was very tan.  My moles all turned black and my dermatologist had a fit!  I wonder if Shoe knows what people are taking and if he thinks it helps? There are a few threads on the Melanotan forum about Shoes stuff but nobody says it helped them.

With you constantly being exposed to mold with a very high ERMI you definitely are in a tough spot.  The number one thing you can do is get away from the mold!  Can it be remediated?  The other thing is to invest in great air filters.  I use the IQAir.  Costs $899.  I have 3 of them in the house.  That would help lower the load!  But as long as you are being exposed to the mold it is a serious problem!

I have used Far Infrared Saunas and have one in my house. It is a great detox for lots of things including heavy metals. Not sure if it gets rid of mold toxins though.

Exercise is BIG help for lots of reasons!  Good that you are doing that!

The things I do though are some things that Shoe occasionally recommends and some other things I just think help a lot.   I take losartan 50mg and pioglitazone 30mg everyday.  I am not recommending these as I am not a doctor.  I am just telling you what I do.  I get them through PharmacyEscrow.com w/o an Rx.  They are very potent anti-inflammatories for most of the markers Shoe tracks and a few he doesn't track.  Losartan will lower TGFb1.  It will lower Blood Pressure a bit and that is a problem as most mold/CFS/FM people have low BP already.  Sometimes you can take Licorice Root to raise the BP back to normal.  You have to figure out your right dose though so you have to have a BP monitor. Anyone who has low BP ought to do what is needed to get their BP to normal as they will feel better with normal BP.

 

I believe the most significant thing you can do for BP and many other conditions is to make sure you are making enough cortisol. Most people think cortisol is bad but without enough of it we would die! Many people with chronic illness have low cortisol. It is called hypoadrenal or adrenal insufficiency.  On a good day without much stress your adrenals make around 40 mgs.  On very stressful days they can make over a 100 mgs.  If you don't make enough you will suffer because of it.  Here are two good articles on it.  ADrenal insufficiency  and Dr. Doyle.  Hypoadrenal is the main reason people with mold illness (and many other illnesses too) have low blood pressure, are fatigued, dizzy, depressed etc.  Their body simply does not make enough cortisol. I take low dose hydrocortisone 20-30mg per day in 4 doses which mimics the way the body produces it.  I take more if I feel I am coming down with the flu or a cold or something.  Or if I am under a lot of stress.    Don't be confused, I am NOT talking about prednisone or anything like that.  Hydrocortisone is the exact same hormone the body makes.  If you are hypoadrenal you will feel a LOT better taking cortisol!  We are talking about taking physiological doses NOT pharmacological doses.  It is the later which can become very dangerous!

The Hypothalamus in most moldy patients does not work well and the HPA axis simply has lost control of a lot of hormones ala your issues with ADH.  I would check ALL your hormones using the ZRT Labs full kit.  If I was low on anything I would supplement it!  You basically have to try to compensate for a hormone system that is out of whack, probably permanently.  Most mold patients are Hypo everything!

  

Regarding Losartan and Pioglitazone,  both of these have helped me feel better.  They removed a ton of soreness when I exercise.  Go to PubMed and just do searches on both and you will see all the amazing properties they possess for many systems in the body MAINLY because they STOP much of the inflammation cascade that Shoe talks about.

I also use BCM Curcumin 500mg twice per day.  It also is an extremely potent inflammatory.  CoQ10 from Life Extension and of course Jigsaw Magnesium and Vitamin C in as high a doses I can take without getting the runs.

The other thing I do is to address the very common symptoms of depression, anxiety and insomnia.  Sometimes natural means can help a lot with these.  Things like l-Theanine, 5-HTP, St. John's Wort, SAMe etc can help    I used to just tough it out.  But I finally realized real damage had been done to my neurotransmitter systems and it was stupid to try to just tolerate it.   Google Dr. Cheney and read his stuff. 

Basically I take the approach of trying to feel as good as I possibly can given the circumstances that basically are out of control due to damage mold has done.  I take 3mg of Intuniv which greatly increases blood flow to the pre-frontal cortex which almost is ALWAYS needed for mold patients who consistently show low blood flow to this critical region of the brain.  It is the Executive Center of the Brain!  

I run about 5 miles every 3-4 days.  That is a great stress reliever and produces endorphins.  

Another thing to research and decide if it sounds useful is to google LDN (low dose naltrexone).  I have tried it but it interfered with my sleep.  I hope to do it at a lower dose later on.  Autoimmune conditions often co-exist with mold issues.  LDN seems a promising thing to consider.

And to your final question, no, VIP did not help me or about 8 other of Shoe's patients who took it.  He claims it is fantastic but I have only talked to one person who believes it helped them somewhat but it was hard to tell.  So it is no miracle cure as yet unfortunately.

I hope this helps.

 

Pat

A typical mold patient

z

I get emails like this a lot.  I thought his questions and my answer could be useful.

Dear Pat,

 

I'm a former        who lives in           .

 

I will keep this brief.  My health has been declining for 4 years. Problems with digestive system, nervous system, lungs and sinuses. Doctors were unable to find the cause.  Recently, a testing company discovered mold growth behind the walls of my home office where I've worked for the past six years. The office had severe water intrusion problems during this time.

 I've since moved out and have disposed of just about all of my personal belongings.  What's left is sealed and in storage. Unfortunately, I'm unable to be near it at this time.

 

I went to Dr. Shoemaker for diagnosis and treatment.  All tests verified mold illness: double genotype (not the dreaded, thank goodness), MSH of 8, VIP of 10, C4a over 10,000, etc.

 

I've been on the cholestyramine for 7 months.  Some problems have improved such as ADD, confusion, leg and foot cramping and twitching and severe burning in my spine. - however, I'm still experiencing dehydration, fatigue, depression, brain fog ad severe burning sensation in my neck and head.  It's miserable and I'm unable to work.  I've lost everything - health, finances and property.  Shoemaker will not give me Actos or VIP replacement because my biomarkers have not improved in the 9 months he's been treating me.  In fact, my c4a has doubled from 5,000. to 10,000.  I need help.

 

I'm renting a room in a house.  All vents have heppa filters in them and I have a large heppa air cleaner in my room.  I IRMI tested the house though I spend 95% of my time in the sealed room.  The results were 5.28.  Not sure what that means.  Is this still too high?

 

I can't live like this any more.  Can you recommend any other doctors or treatments. And most importantly, can you tell me what companies are researching MSH replacement and possibly how close they are to doing human studies?

 

I'm feeling like it may be my only hope of recovering from this.  I want my life back.

 

Thanks for your time.

Dear      ,

 

An ERMI of 5.2 is very high actually and means you are still begin exposed to mold.

 

I know this is a very discouraging thing you have been going through for a long time but you can get well.  As you know, while I love Shoemaker's research I don't have much respect for the way he treats, and fails to treat patients.

 

What is your situation?  You say your finances have been drained but do you have some money to see a new doc or buy meds from overseas even if you cannot find a good doc to work with?

 

Actos, Losartan, a good antidepressant, anti-anxiety med, ADD med, hormone replacement would all help you manage your illness.  But these are not cheap.

 

VIP would not help you much IMO.  I have never talked to a single person on VIP that it helped.  In fact, in most cases it caused markers to ALL be worse.

 

aMSH appears to be a long way off.  CLinuvel in Aus is doing trials on it but for conditions not for inflammation etc.  It is unclear when they will get approval, and whether it would benefit us.  So I simply assume it won't be a help and focus on things I can do.

 

Regarding C4a, I am not at all sure it means a lot. There is actually extremely little research about it from anyone other than Shoe,. It appears to be a marker that moves around a lot for no apparent reason, and often does not relate to symptoms at all though Shoe claims it does.  There is only one lab that tests for it and it is a very sketchy lab in my opinion.  I think TGFb1 is a better marker with tons of research about it.  This is also a marker where commercial labs are not yet testing for it.  So I am not even sure it can be tracked effectively.  But at least it is being widely researched and the what it does in the body is far more understood, and the things that can control it are far more understood. 

 

I personally have experienced GREAT relief in bringing it down to normal levels.

 

Pat

 

Why I no longer recommend Dr. Shoemaker - Updated

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 girlfriend 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.

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 11 - How is VIP doing for me?

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

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

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.

A family tragedy caused by MOLD

Check out this blog of Andrea Fabry.  Her family lived in mold infested house for 8 years.  Everyone in the family was sick with all kinds of weird conditions.  An incredible story.