developed by: Ritchie C. Shoemaker, M.D.
Using various tests, Dr. Ritchie C. Shoemaker has mapped out the Biotoxin-Related Illness Pathway that helps identify and correct dysfunction for those made ill by neurotoxins from mold, lyme disease, spider bites, and other bacteria and fungi. A keystone of his approach is a computer-based eye test called the Visual Contrast Sensitivity (VCS) test that can be done via his website ChronicNeurotoxins.com. He also recommends a specific blood test to determine genetic susceptibility to mold illness, post-Lyme disease, and other related conditions.
For those genetically lacking the ability to excrete these neurotoxins, the main treatment is Cholestyramine (CSM), a cholesterol-lowering toxin-binding medication that is not absorbed by the body. We recommend that you get the compounded version of CSM so you can have the artificial sweetener and other undesirable filler ingredients removed. Based on the individual’s test results, other medications are used in conjunction with CSM to assist the body in ridding itself of toxins and to correct deficiencies and overages.
If you are interested in this protocol, a must-read is Dr. Shoemaker’s groundbreaking book Mold Warriors, which covers all of the biotoxin illnesses treated by his protocol, not just mold. You can also check out Dr. Shoemaker’s websites: Biotoxin.info, ChronicNeurotoxins.com and MoldWarriors.com.
Dr. Shoemaker practices in Pokomoke, Maryland. For those unable to travel to Maryland, you can buy your local doctor a copy of Mold Warriors which details the protocol and treatment, and even has a list of the recommended tests, as well as a cheatsheet for interpreting the HLA-DR test for genetic susceptiblity.
posted by earthwalker on June 10, 2009 | 1,856 views | tags: ALS, Amyotrophic Lateral Sclerosis, CFS, chemical sensitivity, cholestyramine, chronic fatigue syndrome, cyanobacteria, Dr. Ritchie C. Shoemaker, fibromyalgia, FMS, lyme disease, MCS, mold illness, neurotoxins, Shoemaker Biotoxin Illness Protocol, spider bite illness
earthwalker
August 19, 2009 at 5:51 pm
This is the protocol that gave me hope and led me to a diagnosis of Mold Illness and Lyme Disease. Mold Warriors is recommended reading for anyone with chemical sensitivities, fibromyalgia, chronic fatigue syndrome, and other symptom sets that defy explanation.
My advice to those wanting to pursue testing for the Shoemaker Protocol would be to become a patient of Dr. Shoemaker’s. Although this entails travel and money, in the long run I believe it will save you a lot of time, stress, and headache. My experience in 2005 getting my local doctor to order the tests and then to coordinate with our local Quest offices, Baltimore Quest, and LabCorp was unbelievably fraught with human error, resistance, and I was treated very rudely by various parties. This caused undue stress which only added to the set of symptoms I was dealing with on a daily basis and nearly drove me mad. The whole process of completing all the tests took 6 months due to all the lab errors!
Dr. Shoemaker’s office was of very little help and was unwilling to assist in the process. Any efforts on their part to share information resulted in confusion and the wrong tests being ordered. Both myself and my doctor’s Office Manager were treated unkindly by certain staff members. A promise made by Dr Shoemaker to review my test results at the end of the process was never kept.
My doctor and I fumbled around in the dark to try to determine how to proceed once we had the test results. I went on Cholestyramine (CSM) for approximately 6 weeks and found it alleviated the severity and extensiveness of my MCS symptoms, making my daily life much more bearable. Unfortunately, the lab I was using (Hopkington Drug in Massachusetts) screwed up my second batch and sent it with a filler they were not supposed to have included. Because they had mislabeled the medication, I did not catch the mistake. I had a series of near anaphylactic reactions that week and went off all supplements and meds, including the CSM.
I believe very strongly in Shoemaker’s Protocol, and recommend anyone with MCS, FMS, and CFS to get tested if there is a chance they have Lyme Disease, Mold Illness, or any other of the related biotoxin illnesses. His book Mold Warriors lays out his protocol and is a fascinating read. But the road to pursuing his protocol can be a very difficult one if you do not have a local doctor familiar with it or willing to do the legwork for you with all the labs. The best scenario is to become a patient of Dr Shoemaker since his office has a long-term relationship with their local Quest lab and things should go much more smoothly there.
I have heard that many people have had great experiences as a patient of his, but others have had horrible experiences.
Here are some tips based on my own personal experience if you do proceed with the testing locally:
• The LabCorp MSH test requires a special kit that needs 1 -2 weeks lead time to get in. Just be aware—I wasn’t and the lab didn’t know either, so they took my blood and then a week later I was informed they had to order a kit, then I had to wait another 2 weeks to get the blood re-drawn!
• Make sure you order the HLA DRB DBQ Disease Association test from LabCorp. (NOT the HLA-DR specific, which is what I ordered since Dr S did not specify—he just wrote “HLA DR by PCR”. That cost me $250 and was not necessary, and I had to redo the test which cost me more $$ and more time and effort.) Make sure they get enough blood. I had to redo mine because they didn’t collect enough. Almost every test I took at Quest and LabCorp had to be redone 2 to 3 times due to the technician’s error, or the lab’s screw up. It was unbelievable.
It’s best to have 1 contact at Quest who can oversee the process for you:
• Contact a supervisor at the Quest lab “hub” and explain that Dr Shoemaker has a special relationship with the Baltimore lab and certain tests need to be directed there so they can be included in his research.
• Have the supervisor agree to track the blood to make sure it gets from your local draw center to the hub and then to Baltimore.
• Have the supervisor contact someone at the local draw center and explain the situation.
• Then follow up with that Supervisor to make sure the blood made it to Baltimore.
• At the time of this writing, Dr. Shoemaker is the only doctor authorized to order the MMP-9 through Quest. The first time, I was told I couldn’t get it since Dr Shoemaker did not order it. The next time I decided to take a chance and I had my doctor put it on the requisition again, and somehow mine ended up in Baltimore and got processed even though I didn’t ask for it to go there! The person at the desk figured out that my doctor and Shoemaker were somehow working together since a sheet I gave them was faxed from Shoemaker’s office. I was lucky.
• The Cytokine Panel has to go to Baltimore and from there it is sent to an outside lab in Denver. It takes approximately 6 weeks to get the results since they only do that test once a month. The Baltimore Quest lab is the only Quest with a special arrangement with the Jewish Hospital in Denver. My blood never got to Denver…supposedly a Fed Ex screw up, but then it took 6 weeks to find out. To avoid this, have Quest track the blood from Baltimore to Denver and confirm they received the blood specimens. Follow up!
PLEASE NOTE THAT THIS INFO IS FROM 2005 AND MOST LIKELY HAS CHANGED SINCE THEN. JUST USE IT AS A GUIDE TO FIGURE OUT THE RIGHT QUESTIONS TO ASK!
Carol Steinitz
January 7, 2010 at 3:40 pm
Thanks for the commentary. I was considering making appts w/ Dr. Shoemaker as I have been very ill from mold for over 2 years, and am now selling my house and still trying to find an apt. that doesn’t make me ill. I began having trouble after a long bout of undiagnosed Lyme disease. Dr. Colleen Pietrowski is someone in Lutherville, MD, Advanced Physical Health, that is familiar w/ Dr. Shoemaker’s protocol and she is very kind as well. She can order the MMP-9.
ruth lyons
January 15, 2010 at 6:59 pm
i have been unable to locate a health professional
in washington state that is schooled in dr. shoemakers’
protocol. any direction is appreciated.
earthwalker
January 16, 2010 at 12:35 pm
Hi Ruth, Sorry but I don’t know about doctors in Washington state who use Dr. Shoemaker’s protocol. You might try Dr. Dietrich Klinghardt in Bellingham, WA – I believe he incorporates elements of Dr. Shoemaker’s work but he has his own very comprehensive protocol and focuses more on lyme disease and autism, but is familiar with mold issues. You could also contact Dr. Shoemaker’s office and ask for referrals in Washington state. Good luck!!
lara m
January 23, 2010 at 7:44 am
For what it’s worth I spoke with Shoemaker’s office yesterday and they won’t give you referrals in your area. She said the options are to see Shoemaker or find a dr. who is willing to educate themselves on his protocol.
sue v
January 26, 2010 at 6:37 pm
Hi,
There are many other doctors who do Shoemaker’s protocol or a variation on that protocol. We are currently working with Dr. Michael Gray in Benson, AZ and there are others. You can learn a lot about mold illness at the sickbuildings yahoo group, also this website lists some other treating doctors: http://truthaboutmold.info/resources. another source of info is http://moldrecovery.blogspot.com/.
Hope this helps. Sue V.
John
March 14, 2010 at 3:03 pm
I have been sick for 5 years and just recently saw Dr. Shoemaker. I have the staph colonization in the nose and says I can’t start to heal until it is gone. I would not wish this illness on anyone. Just finished my antibiotics for on emonth and am going for more blood tests. It feels like you will never get well. Just keep hope alive and pray to God.
earthwalker
March 15, 2010 at 6:42 pm
Glad you are finally getting help John. Good luck to you on your path! Julie
John
March 17, 2010 at 9:19 am
Julie, How are you feeling and what steps did you take to get better. My problem is that I had mold in the house. Had it remidiated but I think the toxins are everywhere and especially in the clothes. I am thinking of leaving everything behind and starting over. I have a place to go, but I don’t want to leave them. Do you have any suggestions for me I would appreciate it. Thanks John
earthwalker
March 20, 2010 at 5:40 pm
Hi John,
I removed your phone number, as I don’t want you to get unwanted phone calls from strangers through the Internet. Phone calls are difficult for me, email is better. I am feeling okay but still have severe lifestyle limitations due to chemical and electrical sensitivities.
From what I have heard, it is very difficult to remediate mold. I had to walk away from everything I owned on more than one occasion. If you don’t feel well, I recommend you do the same. Put whatever you can’t bear to part with in storage and only go to a new place with things that can be cleaned well, like metal. Although depending on your mold sensitivity, even those things could bother you.
When I was living in a mold infested apartment I took Cholestyramine for 6 weeks and it really helped my MCS. Not everyone does well on it, however. I took a special version that had most fillers removed. I also found drinking wheatgrass, a potent detoxifier, to be helpful to me.
Anything that helps you lower your toxic load I imagine will be helpful. Reducing use of chemicals in your life, eating organic, etc. Visit the Recovery Basics section of our site for more tips: http://planetthrive.com/2010/03/recovery-basics/. Go slowly though, as anything that increases your ability to detoxify substances can lead to increased symptoms. It’s a careful tightrope one must walk to balance symptoms and detoxification….
Best of luck to you!! Julie
ray d, crank
April 16, 2010 at 9:18 am
in 05, we bought this moble home from a very big dealer ship here, 2 months latter we found stachybotrys+4 ? the water pipes had been busted before we got it. no inspection was done, this was illegal. the mold has made me and my family sick, allergies, rashs, infections, one after the other, breathing prob, memory prob, dizzyness, head aches, nose bleeds coughing up blood, i had no ideal this stuff could hurt you this bad? we are seeking a doctor as of now, out of state. glad we found dr,shoemaker. he will be are next stop.
earthwalker
April 16, 2010 at 8:30 pm
That is really terrible Ray, so sorry you and your family had to go through this. I hope you can find relief with Dr. Shoemaker. Thankfully you identified the problem and can now move forward with treatment. Best of luck to you all! Julie
Debbie B.
April 22, 2010 at 9:10 pm
Hi Julie. I am SUPER familiar with all that you’ve uncovered about neurotoxins and mold. I work with an amazing Dr in the Pgh area who has introduced me to the protocols of Dr Shoemaker. I have remediated (safely) mold in our house to successfully eliminate it, detoxed my body of toxic levels of mercury and lead, safely removed my amalgam fillings, etc.; along with a “clean” diet and constant journey of the best supplements for my bodytype, I am now left with dealing with a staph bacteria issue. I’m having a hard time deciphering Shoemaker’s protocol for the 3 (?) different antibiotics that are administered (I believe one is called Bactriban.) I did the nasal swab test, sent it to the univ of MD’s lab…but we never had it tested for antibiotic resistance. Do you have any advice Julie? I’m typically against antibiotic use, but I do believe that it is necessary in my case. I have my pro-biotic course all lined up…but I’m so unclear on an antibiotic protocol. BTW, Dr Dan Pompa in Pgh, PA is an amazing wealth of knowledge http://www.pompahealthsolutions.com. He just released his own detox product called CytoCleanse, and it is an absolutely amazing product. I think it will eliminate my use of CSM.
Martha
June 24, 2010 at 4:49 pm
I’m looking for a source of affordable filler-free cholestyramine. My local compounding pharmacy quoted me a price of $200 for a 6-day supply, which is not even remotely within the realm of possibility for my budget. Julie, it sounds like you had a bad experience with your compounder. Do you not recommend them? Are there other options?
Speaking of things I can’t afford — could someone give me a ballpark estimate on how much an initial consultaiton with Dr. Shoemaker, including testing, would be? Thanks.
jeny
June 27, 2010 at 12:16 am
I believe it was $800 minimum to be seen, when I was looking into it in late ’08. You can call and get the info packet that you’ll have to fill out. But then when you read the packet, you’ll probably see a few reasons why you might want to find another doctor. Please talk to several people who have gone to him and see what you find. I have heard more horror stories and people who were told and believe that they can’t be helped. Most of them were just given CSM or a CSM alternative. You can get that without traveling to MD and spending thousands. Contrast that to what you find from people who see real EI doctors. I just hear from too many people who regret wasting their money with him, and I’m so glad that I heard these things BEFORE going.
earthwalker
June 27, 2010 at 12:47 am
Debbie B. sorry I just saw your post. I don’t have much experience with antibiotics, sorry I can’t really offer any advice on it. I used cryptolepis, an herbal antibiotic (suggested by herbalist Stephen Buhner for use with Babesia, which I don’t have) from woodlandessence.com both internally as a tincture and also as a nasal spray to try to address a nasal staph infection. I did not retest after treatment so I don’t know if it was effective. This was about 3 years ago. I hope your doctors can help you! Best, Julie
earthwalker
June 27, 2010 at 12:55 am
The lab I used was Hopkinton Drug in MA. http://www.rxandhealth.com/ It was about 5 years ago. The problem I had is they mislabeled my Rx originally, so when I got the refill I did not question it – I just assumed they had filled it the same as before (without the fillers I had requested be removed). I ended up ingesting a known trigger for me for several days and then having an anaphylactic reaction to fresh coconut. I would not say I don’t recommend them. I would say that if you get a mislabeled Rx because you gave special directions and they forgot to note it on the bottle, then to MAKE SURE that you have them correct it when you re-order. Do not take anything for granted.