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 Though now outdated and poorly organized, you will have a MUCH better understanding of your illness.
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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.
