2.13 What are those numbers people put by their names at
the end of messages?
Enzyme Potentiated Desensitization Frequently Asked Questions (with answers).
Revision: 09/08/2006 Portions (C) Copyright Stan Rohrer.
For comments concerning this page, please contact Stan Rohrer.
||||| Home Page ||||| Go To Site Contents ||||| Go To Allergy Page |||||
Enzyme Potentiated Desensitization (EPD) is a method of allergy or immunotherapy treatment using extremely small doses of allergens to desensitize people from their allergies. It has been seen to be effective for inhalant, food, and chemical sensitivities, along with acting on other significant health problems. The discussions are written from the perspective of the United States implementation of the treatment protocol. Herein we will attempt to answer frequently asked questions about the FAQ, the EPD Mailing List, the EPD treatment and surrounding protocol, common patient questions, and provide direction to additional resources.
Readers should note that EPD is not widely available in the United States due, in part, to restrictions of importation by the FDA. Development of Low Dose Antigens (LDA) is a replacement that is made available in the USA.
DISCLAIMER. The information contained herein was generally written in relation to EPD. As such, these may or may not relate to the LDA treatments being developed. Though, the two treatments appear to follow similar restrictions and treatment plans.
DISCLAIMER. The EPD FAQ is an "Unofficial" collection of information. That is, neither Dr. Leonard M. McEwen, nor Dr. W. A. Shrader, Jr., nor any principle in the FDA/IRB study, nor any principle in the EPD development, nor any principle in the LDA development, nor any principle in the administration of the EPD technique, nor any principle in the administration of the LDA technique, nor any member of the American EPD Society, nor any member of the paid medical community, have authorized or sanctioned this collection of information. The editor, writers, and submitters of questions and answers herein are generally not a part of the medical profession and may or may not have first hand EPD/LDA experience. These items have been collected as a service to EPD Mailing List members, for information only, and cannot replace the advice of your medical practitioner for your particular case. While every effort has been taken to ensure the accuracy of the information contained herein, the author, maintainer, and contributors assume no responsibility for errors or omissions, or for damages resulting from the use of the information contained herein. Implementations and usage strategies of EPD and LDA may change with further development and this document may not keep fully up to date. Again, this information cannot replace the advice of your medical practitioner.
||||| Home Page ||||| Go To Site Contents ||||| Go To Allergy Page |||||
2.13 What are those numbers people put by their names at
the end of messages?
||||| EPD FAQ Index |||||
1.1 Where can I get the latest version of the EPD FAQ?
[Section Updated: 3/97]
Only by World Wide Web page:
http://www.dma.org/~rohrers/allergy/epd_faq.htm
1.2 Who are the author and contributors for the EPD FAQ?
[Section Updated: 8/00]
Stan Rohrer <stan.rohrer at scitexdpi.com> had been a patient using the EPD protocol. He has volunteered to administrate this FAQ for the EPD Mailing List. Initial FAQ construction began in December, 1996.
You can note some names scattered throughout the text. These people, and many others, have been active on the EPD Mailing List at one time or another, but may not be currently active. Contribution to the Mailing List are the primary source for answers in the Patients Concerns sections.
Publications and studies have been the primary sources (though not only sources) for the Learning About EPD Treatments sections. Most of these are noted in the Research Resources section.
Where any information found here is in conflict with the "official" American EPD Society site, or in conflict with your doctors information, please consider those sources may be more correct than the responses collected in this FAQ.
A special thanks is due to Jerry Straks <jstraks at switchboardmail.com> for having the foresight to archive the messages from the EPD Mailing List since late 1994. Without this resource, the creation of this FAQ would certainly not have been as easy and coverage would have been limited. [Editor - Jerry has NOT volunteered to supply additional copies. Please don't ask.] A special thanks is also due Jerry as he reviewed the FAQ contents prior to its release. Jerry is a computer professional and a former EPD patient and user of the Very Mixed Diet (VMD).
A special thanks is also due to Marge Jones <mastent at enaila.nidlink.com> for doing a "sanity" check of the initial FAQ contents prior to its release to the public. Marge is an RN, a writer of medical articles and books, and an EPD patient. She has offered excellent insight into many of the items discussed here.
Updates to this FAQ are done on a continual basis as the authors time warrants. However, in September of 1997, substantial changes, corrections, and updates were made throughout the text based on input learned from listening to the tapes of the July, 1997 EPD Society Meeting at Colorado Springs.
1.3 How about a Copyright notice?
[Section Updated: 9/97]
This collection of information is (C) Copyright 1997 (and later) by Stan Rohrer. All rights reserved. Permission is granted for personal non-profit use. Additional copies and distribution require the express written consent of Stan Rohrer. Some information within this collection may be otherwise copyrighted and remains in the possession of those holders where that is the case.
1.4 How do I submit questions or answers for this FAQ?
[Section Updated: 2/97]
I have a real family supporting job, as well as many other functions that keep my life busy. As such, I cannot commit the time to be a clearing house for questions on EPD. As a matter of fact, the mailing list would likely provide better answers, from varied experiences and points of view, than I can do on my own. Read this FAQ, check out the references, and please join the mailing list (see below for instructions and address). Submitting questions to the mailing list is the best way to become a part of this EPD community. If I believe the questions and answers are relevant, and not erroneous, as discussed on the mailing list, I will include them here at some later date, as time permits. If you have done research on a particular answer to a mailing list question, don't be afraid to get my attention by suggesting "this may be one for the FAQ".
1.5 How do I get my name or E-mail address removed from this FAQ?
[Section Updated: 4/97]
With the advent of junk mail crawler robot software picking up E-mail addresses from Web pages (i.e. this FAQ) I have elected to slightly alter E-mail addresses so that they are not as easy to pick by the roving robots. The "at" sign character in the E-mail address is returned with the text word "at" so the address is unique to the robot. This should reduce junk mail arriving in the mail boxes of people I have quoted herein.
Some people would still rather not have their name published. Send E-Mail to <stan.rohrer at scitexdpi.com> stating the name to be removed and referencing the EPD FAQ.
||||| EPD FAQ Index |||||
2.1 What is the EPD Mailing List?
[Section Updated: 2/97]
Basically it is a group of people with a common interest in the EPD form of treatment. A computer has been set up to receive E-Mail submissions and resend them to all E-Mail addresses of individuals who have identified themselves as interested receivers by subscribing as described below.
The intent of this group is to create an open forum for people undergoing EPD treatments, people considering it for themselves, family members, friends, or people just interested in it. Since there is very little to the EPD injections themselves, this group functions as a dynamic support community for group members struggling with the protocol's behavioral modification, including diet, environment, and habits, that take place the week before and the two weeks following the actual injection. This regimen can be very tedious and frustrating. Moreover, for some, relief is not experienced until the second year of injections and, since the injections are typically spaced two months apart, this form of treatment represents a major intrusion in one's lifestyle; not to mention the effect on the family and friends (and pets) surrounding the patient. Keeping these constraints in mind, this mailing list, among other things, can serve as a forum for sharing personal experiences, knowledge, feelings, and so forth. EPD is fairly new in North America and hopefully the scope of this forum, viz-a-viz membership, might eventually extend to the UK, where EPD began in the mid 1960's and is widely practiced today. [Editor - I edited this from the Mailing List message of introduction, thanks to Jozsef A Toth <jatst3+ at pitt.edu> I believe.]
2.2 How do I subscribe to the EPD Mailing List?
[Section Updated: 04/02]
A Web page interface is now being used for EPD Mailing List subscriptions. This is actually more simple than some of the Email accessed subscription approaches. Be sure to read the information and follow the instructions. The list has movved among a number of servers so this author hopes he has kept up with the instructions.
If you would like to subscribe to this group:
1. visit http://groups.yahoo.com/subscribe/epd -OR- 2. send email to epd-subscribe@yahoogroups.comIf you would like to specify an alternate or alias email address:
1. visit http://groups.yahoo.com/myprofile
As of 4/2001, Yahoo defaults there Email advertising preferences so that Yahoo Email accounts will receive solicitations. To disable the defaults see:
http://subscribe.yahoo.com/showaccount
Access can also be gained from the SHOW ACCOUNTS screen then click on EDIT YOUR MARKETING PREFERENCES. Be sure to check NO for each entry. Check the complete page and read. Be sure to click the SAVE button to store your preferences.
As an alternative subscribe approach, send your Web browser to:
http://groups.yahoo.com/
Select "Find A List" and search for "EPD". A number of possible matches will likely result. Read the search list and click on the "epd" list entry. This is not the "allergy" list entry that also indicates EPD - a fairly dead list. In other words, the hierarchy to our list is "Home : Health : Allergy : epd". Click on "Subscribe to this List". Depending on your status at this site you may have to register or, if registered, simply subscribe. Follow the instructions to register or/and subscribe. The system will mail you a confirmation request Email which will include instructions for completing the confirmation. If the confirmation is acceptable to the system you will receive a message saying that you have been entered as a subscriber to the list. After confirmation is complete you will begin receiving messages and will be allowed to send messages to the list.
If your Email return address is different than the alias that you subscribed under, you may not clear the confirmation via the Email return path. An alternate option using a Web page confirmation should work as described in the confirmation request Email. However, some people report that using an Email alias, which differs from the From: line on the Email, will cause messages to the mailing list to be rejected. If you get rejected messages, be sure to confirm what the From: line of your Email headers say and register with egroups using that exact syntax.
As of January 5, 1999, the EPD Mailing List is no longer at the <listserv@wvnvm.wvnet.edu > address.
As of October 1998 the EPD Mailing List is no longer at the <epd@list.pitt.edu> address.
2.3 How do I send messages to members of the EPD Mailing List?
[Section Updated: 4/02]
You must first be a registered member of the EPD Mailing list. See "How Do I Subscribe" above.
To send a message to all the people currently subscribed to the list, just send mail to:
epd@yahoogroups.com
This is called "sending mail to the list", because you send mail to a single address and LISTSERV makes copies for all the people who have subscribed. This address (epd@egroups.com) is also called the "list address". You must never try to send any list command to that address, as it would be distributed to all the people who have subscribed.
2.4 What sort of discussion is considered acceptable on the EPD Mailing List?
[Section Updated: 10/00]
Almost any discussion about EPD protocol, treatments, problems, resources, and news are considered proper.
Name calling, picking on people, and personal slurs are considered improper, as in most E-Mail lists. Threads like these only disrupt the usefulness of the mailing list by perpetuating the problems. If you disagree with an EPD related discussion, by all means respond to the discussion topic with your opinion. If you disagree with the methods or words of the presentation directly aimed at a person (a flame as it is called), don't bother to add more fuel to the fire. Unfanned flames will eventually exhaust the fuel source and die.
Blatant advertising for products or services not related to EPD are improper. Advertising, from an informational perspective, on EPD and allergy related items, are acceptable if kept short, to the point, and not repeated more often than monthly (quarterly is even better). A pointer to a Web site or providing an E-Mail address for more info is appropriate for information beyond a descriptive paragraph or two.
List mail replies including resources and items, in response to a valid question, are considered proper and helpful, even if the sender stands to gain from the advertising exposure (the sender would do well to state they have potential gain so as not to offend some touchy list readers).
Product or service trade names are often fundamental to the discussions and are welcomed to avoid ambiguity. Use of trade names in discussions, where not providing gain to any list members, should not be construed as advertising.
Publishing lists of EPD doctors is not considered appropriate as the FDA may consider this advertising or solicitation and hence may taint the EPD study. A tainted study will be withdrawn and hence EPD withdrawn from access. Further, some EPD docs may not wish to publish to the world their use of a non-mainstream treatment. Please respect their wishes.
It is considered legitimate that list discussions of doctors, concerning likes, dislikes, and treatment plans, can be a useful thing since these are construed as personal opinions of the writers and not solicitations or advertising used for gain of the EPD principles.
Discussions of topics not directly or indirectly related to EPD are discouraged, since significant volumes of such content will dilute the value of the group to those struggling with EPD or suffering from conditions that may also respond to EPD.
The inclusion of copyrighted material mailing list messages is subject to copyright laws. In general, copyrighted material should not be sent to the list unless the sender has appropriate permissions from the copyright owner.
The inclusion of Web pages is generally not a good idea in mailing list messages. Many Email programs do not render the pages for viewing as does a web browser. Reading such pages becomes cumbersome when trying to get past the embedded HTML language markups. Without the complete HTML page information the rendering will not be complete and viewing, even from the archives, will be extremely cluttered. For the mailing list, provide URL's to the Web pages instead.
2.5 How many messages will stuff my mailbox from this list?
[Section Updated: 7/01]
We may see a flurry of 30 to 40 messages over a few days and we may see completely dry spells as well. In early 2000 we saw about 60-80 messages per week on the average. The average message size was about 8-12 K bytes. As the list grows more activity might be expected.
With the advent of EPD becoming unavailable in Spring 2001, the message rate has increased as more people joined. Perhaps it will lighten when/if this issue is resolved. In July, 2001, the list was seeing an average of about 170 messages per week and had peaks over 200.
2.6 Are the Mailing List Discussions indicative of the normal treatment routines people see?
[Section Updated: 2/97]
Most likely they are not. People who are flying through the treatment without problems don't have much need to expend time and energy to find out more about something that is working for them. Likely the list gets weighted towards the side of the problems and concerns. People turn here for an education and for comfort and solace when things are not going well. This is much like Usenet groups or mailing lists dealing in specific issues, for example, PC video cards. Most of us don't read such a group unless we are having problems or intend to go make a purchase of a new part for our computer.
Very roughly stated, the mailing list had about 158 members in January of 1997, and estimates of over 5000 people are participating in the IRB/FDA study for the US alone, so the list represents about 3% of USA EPD patients (also note that not all list members are actually USA patients). Certainly, worldwide, the mailing list is statistically insignificant for reporting treatment information or trends based on individual list member responses or polls.
On Oct 21, 1996 James Newman <James at elija.demon.co.uk> commented on his brief poll:
Thanks to all of you for your support. Of course I'll give [EPD] a go for at least a year - my initial fear that it might be quackery has been completely dispelled by the number of very genuine and obviously sensible people who have had palpably good results with it.With regard to the tone of the list, it occurred to me that dwelling on symptoms as they occur may give a discouraging slant. So I did a survey of the most extreme cases - good, bad and horror story (by email, not sender)- for the time I'd been subscribing. The negatives came to 11 and the positives to 15, with some individuals represented in both camps. Not very scientific, but it was enough to persuade me that it might be a good idea, if rough going at times. However, that hasn't stopped me wanting to winge [complain] in public, which is probably therapeutic too. I will shout very loudly if and when any good comes of it, to redress the balance.
On Nov 1, 1996, MVDS43A at prodigy.com (MR RANDAL K SPARKS) replied to comment by Patricia Rentz:
> Since I recently started EPD shots, it is great to hear how other's are doing. "The Pink Book" would have you believe this treatment is a sure thing as long as you follow the rules but, that is not what I am hearing here.Patti, nothing is a sure thing but the view you get on this list is definitely distorted toward the negative. The people who are doing "simply maavelous" will not bother to get on the Internet and ask about their problems, because they aren't having any. We are the complainers, pissers, and moaners, not the average.
On Nov 24, 1996, Jerry Straks <jstraks at switchboardmail.com> responded to a comment that the EPD forum tends to run to those who are having problems or are just trying to get their first information on EPD:
I can vouch for that. EPD was a life-saver for me. Although this group has been a wonderful source of information that has expanded my understanding of the treatment, I completed my 9-injection sequence last May and have no NEED for the information here. Since I am 99% cured, I still monitor the discussion occasionally, in the hope that I can perhaps "pay back" to others what I have gotten from the group. Thank you to all who have contributed to my understanding. I wish you all the best in your struggles with your allergies and your road to health, perhaps through EPD.
2.7 Is there an archive of the EPD Mailing List messages available for review?
[Section Updated: 3/01]
This FAQ is an attempt to summarize the discussion you might find in such a list. Likely this FAQ should be your first resource.
On Sept 23, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> reported concerning a searchable archive:
I now have available a searchable archive of the EPD Mailing List messages. Access it at:http://www.dma.org/~rohrers/allergy/epd_srch.htmDepending on the users selections, a list of recent articles may be obtained as well as doing searches to return articles containing user input search words.
The recent EPD archives are also available from the mailing list host at:
http://groups.yahoo.com/
Go there, search to find the "EPD" list, click on the EPD entry, and check the archives. Free registration may be required at the site before being able to access some archives. If you are already a member of the mailing list, a Conversion Wizard utility is available to link your existing information to your access of the web pages.
Older archives of the list hosts may still be available but all bets are off. Follows is the ancient information.
On Dec 9, 1998, Sandy Sheppard <cna00012 at mail.wvnet.edu> identified another archive as:
The address for the EPD list archives, housed on the WVNET computer, from October 1998 is located on page:http://wvnvm.wvnet.edu/htbin/listarch.viorexx?epdd-l&a:epd.archives
The LISTSERV software that runs the mailing list also makes archives available. More information on LISTSERV commands can be found in the LISTSERV reference card, which you can retrieve by sending an "INFO REFCARD" command also to "LISTSERV@WVNVM.WVNET.EDU". In essence, to get the messages from Oct. 1998, send a msg to:
listserv@wvnvm.wvnet.edu
with the following message:
GET epdsupport LOG9810
(98 stands for the year & 10 stands for the month).
The EPD Mailing list was run on another list server prior to October 1998. Old message archives may still exist there.
On Sept 15, 1997, Jozsef A Toth <jatst3+ at pitt.edu> explained access to the Mailing List archive:
To get old versions of the digest, send a message to:Majordomo@list.pitt.eduand include:
index epd-digestin the message body. You'll get back an index of the form:
vXX.nYYYe.g.,
-rw-rw---- 1 majordom staff 26346 Feb 11 1997 v01.n001or
-rw-rw---- 1 majordom staff 39860 Sep 13 10:25 v01.n051you can retrieve any digest version by sending another message to:
Majordomo@list.pitt.eduand put the following:
get epd-digest vXX.nYYYe.g.,
get epd-digest v01.n051in the body of the message.
If all else fails, you can get more info from the old EPD List server by sending a message to <Majordomo@list.pitt.edu> with the subject line and body 1st line of <help> (one word for each, without the brackets). Be sure to not include a signature or additional text at the bottom of such requests. If the routine has changed, the new instructions should be provided via this path.
2.8 Who runs the EPD Mailing List?
[Section Updated: 8/05]
To send a message to the most current list administrator, send to:
epd-owner@yahoogroups.com
The current EPD Mailing List administrator is Laura Toms <laura at ahphillips.com> ( was < ltoms at direcpc.com> before 5/3/02, was <ltoms at netspeak.com>, was <ltoms at columbus.rr.com> before 7/13/00).
Prior to January 1999, the mailing list administrator was Sandy Sheppard <CNA00012 at MAIL.WVNET.EDU>.
Prior to October 1998, the mailing list administrator was Jozsef A Toth <jatst3+ at pitt.edu>. With a job and location change, Jozsef transferred the administrative details to the new administrator. We are thankful for his initiation of the EPD Mailing List, and for his term as administrator, as he has contributed much to the on-going communications among EPD interested people.
2.9 How do I change my mailing list options?
[Section Updated: 4/02]
Send your Web browser to:
http://groups.yahoo.com/
Select "User Center" from the menu. From there you can log in and access/set your mailing list options.
2.10 How do I get removed (unsubscribe/signoff) from the EPD Mailing List?
[Section Updated: 4/02]
From the Email address that receives the EPD Mailing List mailings, send an Email message to:
epd-unsubscribe@yahoogroups.com
This will remove your address from the list.
Alternatively, or if the above doesn't work, send your Web browser to:
http://groups.yahoo.com/
Log-in. You may unsubscribe via the user center. Help is provided if you have forgotten your password.
2.11 How do I confirm if I'm on/off the mailing list?
[Section Updated: 4/02]
Send your Web browser to:
http://groups.yahoo.com/
Log-in and access the user center. Your user status should be available.
2.12 Can I access the EPD List if I don't have an E-mail address?
[Section Updated: 6/99]
In a word, No, you can't be a true active member of the EPD E-mail List without an E-mail address. However, there are a number of ways to keep up with the list activities.
A usable way to follow the list without any E-mail address is to read the archives as noted in a section above. In particular, Stan Rohrer's archive is Web accessible and gets the latest messages at about the same time as the list members do. This requires access to an Internet connected computer and assumes the reader does not have a personal Email account.
If you don't have a computer on the Internet, consider visiting a library or borrow someone else's computer that has Internet access. Free E-mail services, such as HotMail <http://www.hotmail.com/>, are available for use as a personal E-mail address. You need access to an Internet connected computer, using any account, and you can access your personal E-mail mailbox via a service such as this.
For people who have a computer with modem but no Internet account connection, consider the free mail services of the likes of Juno <http://www.juno.com/>. These provide software to have your computer dial into their systems and use a personal E-mail account. Similarly, NetZero <http://www.netzero.com/> is said to provide Email and in addition allow free Web browsing.
Also, many areas of the country have Bulletin Board Systems (BBS) run by hobbyists or have a city Freenet access to which can be connected with only a local modem phone call. Many of these are now providing Internet E-mail connectivity for a free registration. Ask your colleagues, computer store, or the neighborhood computer guru about these.
2.13 What are those numbers people put by their names at the end of messages?
[Section Updated: 11/01]
The number of EPD shots they have had. This helps readers know a bit about the degree of experience that the writer has had with the EPD protocol.
||||| EPD FAQ Index |||||
3.1 What is an Allergy?
[Section Updated: 2/97]
Allergists often point to medical tests which find IgE or IgG or other test detectable substances in the blood stream, or by skin reactions, when defining a source of a substance sensitivity. Clinical Ecologists, or Environmental Medicine Practitioners, on the other hand, often define an allergy as any environmental stimulus that produces an undesired symptom or an intolerance. The subtle definition difference is not so subtle when the doctors choose techniques to find sensitivities to foods and chemicals. The clinical ecologist may use the allergist's blood and skin testing, but if they haven't been useful in resolving the problems, he will go on with less conventional means to find the root of the problems. The traditional allergist is out of his league when blood tests and skin tests do not pinpoint a problem. In this FAQ we will use the latter, "broad", definition as it better covers chemical and food problems. That is, any environmental stimulus that produces an undesired symptom constitutes an allergy, sensitivity, or intolerance.
A number of us have been seen by allergists and classified with "Vasomotor Rhinitis" or "Idiopathic Non-Allergic Rhinitis". A person with this type may react to temperature and humidity changes, smoke, odors and emotional upsets. Symptoms are primarily nasal congestion and postnasal drip. This diagnosis comes after negative skin tests. In other words, such descriptions are a "catch-all" category for testing which actually doesn't cover all of the "broad" definition allergies such as food and chemical. Again, we will use the "broad" definition in our discussions herein.
Now how do we limit the "broad" definition? I won't try. Just see if your symptoms and problems relate to the coverage of EPD. They range from hay fever to arthritis, autism, irritable bowel syndrome, and many, many other conditions that appear unrelated to allergies - yet improve dramatically with EPD therapy.
For persons who wish more detail on the narrow definition, the following describes some to that end.
On Apr 22, 1996 Jozsef A Toth <jatst3+ at pitt.edu> said:
According to my ELISA/ACT blood test handbook there are four types of reactions:
Type 1: Acute = IgE
Type 2: Antibody = IgA, IgM, IgG
Type 3: Immune Complexes = Ag + Ab + Complement
Type 4: Cell Activation = LECTIN/CYTOKINE
Type 1 is the immediate response, and types 2-4 are collectively referred to as the delayed responses. Maybe someone else can shed some light on all the Ig and Ag stuff.
On Apr 23, 1996, Simon M McEwen <smcewen at rpms.ac.uk> added:
It depends how much detail you want to go into. Ig stands for immunoglobulin which is the same as antibody. The different letters after the Ig indicate which class of antibody (IgG, IgA, IgM, IgE). All of these molecules have different functions in the immune response, so that IgE, for instance, is the main line of defense against most macro parasites and some viruses (like rubella). For this reason IgE-mediated responses tend to occur in the skin or in the lining of the nose, lung and stomach. IgA is secreted in tears, in the stomach and in milk, IgG and IgM are the main ones in the body's fluids. Therefore (in theory) your symptoms will be different according to which class of antibody reaction you are producing: There is some overlap however.
3.2 What is EPD? How does it work?
[Section Updated: 10/97]
Enzyme Potentiated Desensitization (EPD) is an administration, via skin injection, of a beta glucuronidase enzyme and minute doses of mixed allergens. The enzyme is used at levels already found present in the body and the allergens are used in quantities much less than in conventional desensitizing treatments (allergy shots). The treatment is safer than conventional desensitizing treatments due to the low volumes of the agents. No part of the EPD treatment is derived from humans so the there is minimal risk of transmitting other diseases. EPD contains a wide variety of inhalants, foods, and chemicals and is capable of dealing with most common allergy problems. The EPD doctor determines which of these groups are to be included in the patient's therapy based on that patient's symptoms and history. Customization of the injected allergens beyond the major groupings is typically neither needed nor done, to our knowledge.
Without getting too far into the medical world, EPD reportedly stimulates the immune system to produce new T-suppressor cells, a specific type of lymphocyte, which is a specific type of white blood cell. These take 3 to 4 weeks to mature before they can begin their task of disabling mis-coded T-Helper cells. Essentially, this is a re-training program so the body does not react to those substances contained in the shot. The mis-coded cells are a part of the chain that stimulates the production of histamine, the major trigger of allergic response. EPD works much closer and more effectively near the root of allergy problems than many other current treatments or symptom reduction techniques.
Because EPD is an all natural preparation, and uses nature's own pathways into the desired destinations, some personal restrictions have been noted as beneficial so that the actions are not diverted into creating problems for the patient. By following The Rules, the patient becomes active in the treatment plan and active in protecting the effects of the treatment. Some of the restrictions are aimed at avoiding body stress for a period of time around the treatment and include such things as: don't run a marathon, skip the sauna or other heat to which your body is not acclimatized. Restrictions are also placed on things which may produce a negative result while the EPD treatment is taking effect. These restrictions are not tough in themselves but, as a whole, are a lot of details to be controlled. Included here is a period of the avoidance of: dust, dust mites, tobacco smoke, perfume, chemicals, body lotions and preparations, allergenic foods, certain medicines, caffeine, sexual activity, large doses of inhalant allergens, and pets. Note that this is not a complete description of The Rules and that each patient will be apprised of the necessary restrictions based on his or her particular case. For anyone who is really in need of major relief, the rules are seen simply as a trade-off against the chance to obtain a more normal lifestyle.
There are two versions of the EPD treatment plan - Simple and Complex. Some patients may have the treatment one to three times a year for Simple seasonal allergy treatment. After a few years the number of treatments are often decreased as they are no longer needed. The treatment covers inhalant hay fever allergies and dust mites and is good for the season.
Treating only inhalants, when other food or chemical allergies exist, may tend to exacerbate the other allergies. Therefore, most patients begin the Complex program by being treated every two to three months. The Complex EPD treatment can include foods, chemicals, wood, terpenes, and a number of other sensitivities. After a period of time, perhaps a year or so, the Complex treatments are effective enough that the period can be stretched to three and to four months apart and further continue to stretch the period. Many patients eventually drop to one per year or less. It was reported in October, 1996, that over 85% of the patients have permanently stopped the successful treatment after 16-18 shots, with no recurrence of the symptoms. If symptoms should start to be noted in a few years, another shot, or perhaps two, will restore the patient to a state of well being.
Most of the info concerning patient rules and protocol in this FAQ relates to the Complex treatment plan.
3.3 Has EPD been around a long time?
[Section Updated: 9/97]
Dr. Leonard M. McEwen (London) began work on the method in the mid-1960's in England. He continued the work of the late Dr. S. Popper, who had noted that hay fever symptoms were reduced as a side effect of treatments he was doing on nasal polyps using injections of hyaluronidase. Dr McEwen determined the active ingredients and he and others have since worked to refine the EPD techniques and determine the best patterns for making the treatment effective. Dr. W. A. "Butch" Shrader, Jr. is the United States counterpart in recent years. Dr. Shrader recovered from disability via the use of EPD and became interested in what it had to offer for other patients. Dr. Shrader went to London and trained with Dr. McEwen and they continue to work together as well as co-lead training classes for doctors wishing to participate in EPD. Both doctors are well aware of the slight protocol differences in their use of EPD.
3.4 Is EPD considered experimental? Is it approved by the FDA?
[Section Updated: 09/2006]
EPD importation into the USA was stopped in 2002. LDA (Low Dose Antigens) is the USA replacement. Some historical and current status may be available at the web site of Dr. Shrader.
[Section Below Updated: 05/02]
The first answer may depend on your definition of the word experimental. Having been in use for over 20 years indicates that quite a bit is known about the EPD technique. The test data results are showing good consistent results from the treatment.
As of July, 2000, the EPD treatment is NOT APPROVED by the FDA. The EPD Serum is NOT APPROVED by the FDA as a drug.
The Food and Drug Administration (FDA) does not generally approve or disapprove any allergy therapy technique. Even conventional allergy shots are not approved or disapproved by the FDA. However, EPD has been under a study by GLACM (Great Lakes Association of Clinical Medicine), an Investigational Review Board (IRB), for the purposes of documenting the treatment to FDA standards. This five year study may be used to validate the previous results seen during EPD development. Over 70 doctors and over 7200 patients are a part of this study in the United States as of the Fall, 1997. This study began in 1994.
As of July 2001, over 120 doctors, over 10,000 patients, comprising of over 58,000 doses of EPD have been included in the 8 years of the study. The study has tracked 65 symptoms.
The FDA is not expected to approve or disapprove of EPD. However, the collection of data, based on well-documented scientific study, is hoped to pave the way for greater acceptance of EPD in the US medical community, as well as among patients. Of course we all wish for a favorable outcome of the study but the standards of such studies prohibit early release of the results, favorable or unfavorable.
The EPD serum is also expected to have to undergo consideration as an Investigational New Drug (FDA IND). This will take additional time for completion and final FDA consideration.
Among the institutions which should eventually be affected by the studies are health insurance companies. Many will not cover EPD treatment on the grounds that it is experimental. The IRB data, when released, should help in establishing EPD as a much less controversial, perfectly credible, modality of treatment. Successful scientific medical studies should also help provide additional resources for legal protection to those physicians who choose to treat with EPD methods. With more backing, more doctors will feel free to offer EPD as a treatment. This, of course, is a long process which must be carefully and diligently completed.
In February, 2000, it should be noted that patients that have never started EPD may not be accepted into the EPD program. We hoped this was a short term access closure. The EPD principles, working with the FDA, are apparently reviewing many years worth of data to determine the next steps for EPD research. During this time existing EPD patients may continue with EPD but new entries may be denied.
In the spring of 2001, EPD became unavailable to all USA patients, including previous EPD users. Paperwork and government red tape are an issue for the IND (Investigational New Drug) study.
For more information on the current EPD status, letter writing campaigns, and availability of EPD shots provided in Canada or Mexico, see the following resources:
http://www.epd-pa.org/ - The EPD Patients Alliance.
http://216.243.122.164/epd/ - The EPD Study Office and Dr. Shrader's updates.
http://www.food-allergy.org/epdstatus.html - Web page by EPD patient Nickie Dumke.
On May 3, 2002, Simon McEwen <simon.mcewen at pop3.hiway.co.uk> presented
a synopsis of McEwen and FDA events:
Dr. McEwen's first approach to the FDA was in August 1999. The GLCCM IRB was terminated in February 2000 because of serious deficiencies in several of the committee's trials. The FDA did however allow the use of EPD to continue provided that no new patients were enrolled. The final termination letter was issued to Dr. Shrader on April 4th 2001 citing, among other things, that he had continued to enroll new subjects. In March 2000 we engaged the services of a Washington firm of attorneys -Swankin and Turner. On June 3rd 2000 we submitted a formal request to the FDA for a pre IND meeting. this was denied but we managed to obtain a telephone conference call between ourselves, Mr. Turner, Dr. Shrader and eight FDA officers on July 14th 2000. The FDA stated at that time that the IND must be only for a single indication such as ragweed pollen allergy.We put in a further formal request for a pre IND meeting on November 1st 2000. It was then that we made our manufacturing details available, intending this information to be only for the FDA's benefit. Our second request was denied so we dispensed with the services of Mr. Turner and at our own expense hired a U.S. Regulatory Affairs Consultant. He helped us to submit the application in the correct format, which took months of hard work, and we were finally granted our pre IND meeting in September 2001. Dr. L. M. McEwen crossed the Atlantic four times in six weeks in economy class to try to get this off the ground.
On April 4, 2001, Sue in the UK, <Sue at CADMORE.DEMON.CO.UK> provided status:
I saw Dr. McEwen today. I have told him about this group and he has asked me to pass on the following information re the FDA: The reason that EPD is still on hold is that the FDA now insists that EPD must go through the Investigational New Drug (IND) procedure before any new patients can be taken on. This costs about UK pounds 2000-3000 per antigen (carrots, dog hair etc.). The FDA are also insisting that under NO circumstances will they allow an IND procedure for a mix of antigens, i.e. exactly what EPD is about. This means that each ingredient of every injection has to be separately tested (About UK pounds 15 million in cost!), and even then the FDA would not allow it to be administered in a batch.
This effectively means the end for EPD. Dr. McEwen has been working desperately behind the scenes (he collapsed earlier this year with bad flu) to try to change the mind of the FDA. He has been to Washington twice to see them and has employed a consultant to help. The FDA are dealing with him because he is the originator of EPD and runs the laboratory which makes the stuff.
The only way through this is to get the FDA to allow an IND for the EPD mixes, rather than individual items. The consultant has advised Dr. McEwen that it is the FDA's interpretation of the rules which says that an IND cannot be done on a multiple-ingredient treatment, and that the rules could be interpreted differently.
He has been advised that he will get nowhere with the FDA on his own - his best bet is to lobby a member of Congress who can then lobby the FDA for a change towards EPD.
A suitable candidate has been identified in Dan Burton, a Republican Congressman from central Indiana. Mr. Burton has an autistic grandson and has been lobbying for a change in vaccination rules etc., in other words he is a well-informed and sympathetic man. Dr. McEwen met with his assistant Beth Clay earlier this year and has been advised that about 200 letters to Mr. Burton would give him enough to go to the Senate and try to push through some changes (don't understand this as not an expert on the US political system). The letters can be from people who have had success with EPD, those who are on it and benefiting, or those who would like to do EPD but are unable to get it due to the ban on new patients. The idea is to tell him what benefits you have had from EPD/why you would like to have the treatment, and ask him to help you to get this continued. There is some research being done on EPD - there is a mosquito trial which is being done in the US which is proving that single EPD dose for anti-mosquito allergy is successful (I think this is going through as a stand-alone IND). Also in the UK they are doing a trial on EPD and hay fever (although obviously this is a mix of antigens) at Southampton (results due this autumn).
His contact address:Beth Clay c/o Congressman Dan Burton 2185 Rayburn HOB Washington, DC 20515 tel: 202 225 2276 fax: 202 225 0016he does not have an e-mail address but does have a website with more info, biography, picture and bit on health care views at http://www.house.gov/burton/ So, please can all the US people write. Also if you know of anyone who has had EPD and now left the group, or who would like to have it, who would write, please can you pass this information on to them. This may only be for the EPD people in the US but it affects all of us - without the US demand for EPD injections, the laboratory becomes non-viable and will have to be shut (the finances are already in a dire state), ending EPD for all of us. A last request - please could those who do send letters let me know - not necessarily a copy but a one-line email to let me know that you have sent a letter.
On April 30, 2001, Charles <charles at w-link.net> announced:
Just so everyone knows, the official web site for the EPD Patient Alliance is "www.epd-pa.org" (dead? 04/07/03).
On July 31, 2001, Stan Rohrer <stan.rohrer at scitexdpi.com> received a note that indicated EPD is no longer being operated under the IRB Study rules. The <www.epdallergy.com> web site is now showing links to non-study-controlled EPD sites (such as the EPD FAQ and allergy resources).
3.5 What is the Pink Book?
[Section Updated: 10/2003]
The Pink Book is the Enzyme Potentiated Desensitization Patient Instruction Booklet provided by the American EPD Society and written by W. A. Shrader, Jr. M.D. This booklet has been prepared for patients of physician members of the American EPD Society. It contains information on environment, foods, treatment, supplements, and other considerations dealing with the EPD treatments. Some of answers in this FAQ are a synopsis of the sections contained in the Pink Book. The book originally used here was the January 1996 - 6th Edition. US patients following the Dr. Shrader protocol generally receive the book prior to beginning the treatments. If your doctor is not in the US, or your doctor has chosen to follow the Dr. McEwen protocol, then you will likely not see the Pink Book.
The revision level of the Pink Book, Enzyme Potentiated Desensitization Patient Instruction Booklet, is at least: April 1998 - 9th Edition.
Reportedly Dr. McEwen also has a "Pink Book" although this author
doesn't know if the cover color is actually pink. Be sure you know which
Pink Book is being discussed, the McEwen or the Shrader version.
On 23 Apr, 2002, <proberts at uottawa.ca> commented on the McEwen Pink
Book:
The pink book is Dr. McEwen's "everything patients should know about EPD and how to prepare for each shot" guide. There is also an American Pink Book by Dr. Schrader.On 15 Nov, 1999, Sandy Hughes <moehopper at yahoo.com> suggested a source if your doctor's office doesn't have the latest Pink Book available:Extremely useful to read and re-re-re-read.
It doesn't explain nearly everything, however. Little or no mention of the possibility of developing new sensitivities. Many suggestions people have reported on this list (My doctor told me to.....) are not in the Pink Book, since different patients need slightly different combinations of meds and precautions.
I bought my newest one directly from Dr. Shrader's office. I called and they sent it to me. I think it was $5-6 plus shipping.
On May 12, 2000, Sue in the UK <Sue at CADMORE.DEMON.CO.UK> mentioned a UK version of the Pink Book:
There has only ever been one version of the UK Pink Book, dated 1993! I did suggest to Dr. McEwen that we could do with an update - he agreed but has not had time to do it yet. There are some things that have changed since then (e.g.. the UK 1993 Book says all UK anti-histamines are safe, when in fact the new family of anti-histamines such as Claritin interfere with EPD - stick to the old ones such as Piriton).
On Nov 7, 2002, Heather <Tsasha007 at aol.com> mentioned an update on the UK version EPD Handbook:
One of the ladies in England has produced an EPD Handbook. It is very well organized and full of useful information. I am not sure it would be useful for those elsewhere, because it does specifically relate to products and services in the UK, but surely someone in America could do the same? The Handbook is available from Sue Cook at <cadmore at waitrose.com>.
On Oct 27, 2003, Christi - Indiana <hrabc at
comcast.net> mentioned an LDA Handbook:
My pink book for LDA is dated March 2002....
3.6 What allergies/sensitivities have been helped by EPD treatment?
[Section Updated: 2/05]
Over 50 disorders have been shown to respond to EPD. EPD has been used to treat all aspects of allergies including allergens in the inhalant, food, and chemical realms. Because of having increased T-cells actively doing their thing benefits us in many ways, patients with many co-existing conditions have also improved, sometimes dramatically. EPD, though being studied for allergy response, has been seen to have favorable impact on co-existing conditions including: Hay Fever, Chronic Rhinitis, Food Allergy/Intolerance, Food Preservatives/Additives Sensitivity, Fatigue, Migraine and other Headaches, Candida, Chemicals/MCS, Sinusitis, Asthma, Ear Infections, Depression, Eczema (Dermatitis), Arthritis, Rheumatoid Arthritis, Chronic Bronchitis, Colitis, Muscle Pain, Joint Pain, Migraine Headaches, Hyperactivity/Severe ADD (Attention Deficit Disorder), Emotional Problems, Behavioral Problems, Facial Angioedema (swelling of face or lips), Anaphylactic Reactions (life threatening swelling), Severe/Chronic Urticaria (Hives), Nasal Polyps, Crohn's Disease, Irritable Bowel Syndrome, Ulcerative Colitis, Epilepsy, Post-Viral Syndrome, ME, CFIDS, CFS (Chronic Fatigue Syndrome), Autism, Contact Dermatitis to detergents, Psychiatric reactions to foods, Ankylosing Spondylitis, Systemic Lupus Erythematosis.
See below also: What is the success rate? (EPD FAQ Index).
EPD is not currently developed for treating aspirin or other drugs. EPD can be beneficial for some food coloring agents, food additives, and molds even though not all of the many possible exposures are possible to be included in the preparations. EPD seemingly will not work on raw carrots, raw apples, pesticides, and herbicides, where these are the persons only sensitivities. However, reducing other sensitivities by treatment will lighten the load to the point these items may no longer pose a problem.
There are mixtures for inhalants (e.g. dust, dust mites, pollen, animal dander, etc), foods, and mixed common chemicals, as well as formaldehyde. Based on the patients symptom's and history, the doctor determines the appropriate ones to use. These may be given together as one shot, or more commonly, administered separately, using both arms. This is why some people may receive one, two, or three shots.
EPD is being developed for mosquitoes, wood, laboratory animals, detergents, and a few other odds and ends. These are seeing limited use. Very early research for bee venom and stinging insects are in progress.
It has been seen that EPD can produce favorable results on occasion even for allergic items which are not included in the shot mixes. Relatives of shot mix inclusions may be enough exposure to clear a related sensitivity. Additionally, there are cases where just the right amount of body exposure residue can exist where the injection of the beta glucuronidase, as a part of the EPD shot, will make a useful mix even though the sensitizing agent was not injected as a part of the shot.
On Aug 1, 1999, Nicolette M Dumke <dumkemn at juno.com> was in a discussion which identified the dose names of some available EPD mixes:
The mixes I know about right off hand are:X-theta - low dose foods, inhalants, molds, bacteria, Candida, etc. XE - higher dose of the above IC - inhalant concentrate T - terpenes (covers perfumes, gasoline, etc.) F - formaldehyde PK - Proteus-Klebsiella B - Bacteroides OE - odds and ends - library dust, etc. W - woods
Dear all,For those of you who missed it:
Inhalant Mix - 1C Mix. There are two main mixtures used. The Inhalant Mix (1C) contains most of the allergens we normally breathe in. It includes the following:
- House dust mite, fleas, gnats and other mites (11 types)
- Tobacco, house dust, mould spores (50 types)
- Grass pollens (9 types)
- Tree pollens (19 types)
- Conifer pollens (6 types)
- Flower and weed pollens (14 types)
- Shrub Pollens (10 types)
- Cat, dog, horse and other animal danders (14 types)
Food and Inhalant Mixes - X0 and XE mix. The combined Food and Inhalant Mixes (X0 and XE are different strengths of the same vaccine) contain the following:
- All of the above
- A wide mix of common foods in the average UK diet (58 types).
- Food additives (10 types)
- Gut micro-organisms (18 types including Candida)
- Respiratory tract micro-organisms
Each of the many natural chemical compounds that are suspected of causing food allergy is common to a range of foods. For this reason, the range of foodstuffs likely to be covered by this list is very large.
Special Mixes. In addition there are a number of special mixes that can be added for patients with known allergies outside the cover of the two basic mixtures:
- Wood Dusts Mix (17 types)
- Odds and Ends (various plant and animal debris, algae and extra moulds)
- Mosquito
- Animal Mix (Mouse, Rat, Guinea Pig, Rabbit, Hamster, Gerbil)
- Proteus & Klebsiella Mix (gut bacteria implicated in some kinds of arthritis)
- Oil-soluble Mix (volatile chemicals)
- Formaldehyde
Heather
3.7 What is the success rate?
[Section Updated: 9/97]
There are so many studies, so many treatment symptoms, and so many cause and effect conditions that it we can't begin to identify them all here.
It was reported in 1996, that over 85% of the patients who have followed the protocol have permanently stopped the successful treatment after 16-18 shots, with no recurrence of the symptoms.
Of the seemingly failures in the generally observed population, 10% will feel better than they ever have since their allergies started, but for some reason require an annual "booster" to maintain a symptom free status. These patients are receiving significant reduction of symptoms but are unable to fully stretch out the period between shots or to stop them with continued success. Some patients may admit they have not followed the guidelines and rules for one reason or another. The remaining 5% are true failures for which no results, or insignificant results, have been seen. Studies are still in progress and perhaps will help to identify additional sources of the failure mechanisms. One good possibility is that gut problems may have not been fully dealt with, including: Candida overgrowth, leaky gut, parasites, or other gut dysbiosis. People with these uncorrected problems could move into other EPD better response categories with treatment of the specific problems. Another possibility being questioned is whether or not mercury fillings (dental amalgam) in teeth have an effect on EPD action.
After two years (late 1995) of the IRB/FDA study, unconfirmed reports indicate 55 conditions had been reviewed and the overall success rate was reported between 76-84% (percentage of error included). A 50% reduction in medications have been suggested by the study group, on the average. Many of the conditions appeared to be responding at a rate above 90%. The conditions for which a statistically significant number of people reported greater than a 25% improvement in symptoms included: Food or Food Chemical (not IgE), Perennial Rhinitis, MCS, Mental Confusion (brain fog, spaciness, etc.), Headaches, Chronic Fatigue (not "classic"), Candida Related Complex (respond to antifungals), Seasonal Rhinitis (hay fever), Allergic Conjunctivitis, Multiple Complaints of E.I./PIMS (Psychological Irritable Bowel Migraine Syndrome), Year Round Asthma, Migraine/Severe Headaches, Non-Specific Arthritis/Joint Pain, Gut Fermentation (bloating after most meals, especially sugar), Muscle Pains, Irritable Bowel/Spastic Colon/Chronic Diarrhea, Eczema (Dermatitis), Chronic Face Ache/Sinus Pain (not proven by X-Ray), Immediate Food Allergy (IgE), Chronic Sinusitis (proven by X-Ray), Hyperactivity/ADD/ADHD, Repeated Ear Infections, Constipation, Repeated Chest Infections, Plugged Ears (mod. severe), Depression, Chronic Vaginal Symptoms, Urticaria (Hives), CFIDS/CFS/ME with history of sudden viral onset (healthy prior), Angioedema (lips, face or tongue), Emotional/Behavioral Problems, Contact Dermatitis, Post Nasal Drip (chronic or severe), Urinary Tract Symptoms (not due to infection), Insomnia (mod. severe), Chronic Anal Irritation/Itch (not caused by hemorrhoids), Chronic Cough, Nasal Polyps, Secretory Otitis Media, Rheumatoid Arthritis, Asthma (seasonal). A few additional conditions have shown a greater than 25% improvement but were considered statistically insignificant due to the low number of people reporting on such symptoms. The conditions which need further observation for statistical significance include: Pruritus, Epilepsy, Ulcerative Colitis, Ankylosing Spondylitis, Crohn's Disease, Hyperventilation Complex. [Editor - This data and additional data is available in the Mastering Food Allergies newsletter #88. This data cannot be construed as FDA approval or disapproval as EPD is being studied.]
In the DePaul Study of 1994 [Editor: no direct reference to the study source or published report available], EPD was reportedly the highest ranked of all immune system /anti-viral therapies surveyed. When compared to over 50 current treatment programs it was ranked second highest as "enormous help" behind IV gamma globulin and ranked first over this treatment on an over-all rating. The De Paul study was conducted on patients with "MCS", "Chronic Fatigue Syndrome", "fibromyalgia", and "electro-magnetic sensitivities" for which the patients had failed to get well with ANY previous form of treatment. Perhaps the study results are skewed towards a low effectiveness rating by the patient base, but nonetheless, some of these people who saw relief had exhausted most other treatment options.
As more "general population" participants are involved with the studies (as opposed to the very tough, last resort, cases) the results are statistically improving. Additionally, as more people are reaching the end of the usual 3-5 year treatment term, and the statistical analysis covers the long term data, the positive results are adding favorably to the overall success statistics.
It may be noted that people who are finding relief from conventional treatments have no need to try the less known EPD. Hence, EPD is likely being used on the "hard" cases where other treatments have not been as useful as desired. With this potential "hard case" factor not extrapolated into the results, the true results for the general population may even be better than the studies show. This is an unknown, but likely favorable consideration in any event.
3.8 Are there other upside considerations?
[Section Updated: 6/97]
A wide range of co-existing conditions, besides the patient's allergies, appear to respond to the EPD allergy treatment. Some of those conditions that respond favorably have no other forms of effective therapy, so the indirect approach of treating the patient's allergies may in fact be the most beneficial decision for such patients.
EPD may be the only treatment effective against a broad range of food allergies. Avoidance is a common approach otherwise and sometimes incorporates food rotation schedules.
Some 60% of the patients see some favorable results from the first shot. Most have seen some favorable results among the first 3 shots. These results may be marginal in the early stages but improve in strength and length with subsequent shots.
After 6 or 8 EPD shots, very often the shot cycle can be stretched out from the initial 2 month cycle. The shot cycle can be stretched to 4 or 6 months, even longer. After 16-18 shots, 85% of the patients can permanently discontinue the program with no further recurrence of symptoms (fall 1996 statistical data). The remaining patients are treated at yearly or longer intervals.
EPD is very cost effective in many cases. This is especially true as the shots become spaced farther and farther apart until the patient only needs 3 or 4 a year, then for two years only once a year, then hopefully, none.
EPD can be used safely to treat patients who are extremely ill much more safely than any other forms of therapy available. Unlike many varieties of traditional immunotherapy, no life threatening reactions to EPD have been recorded since it's inception in the 1960's. Well over 300,000 doses [approximately 1997 year numbers] have reportedly been given. In England, traditional allergy shots are only allowed to be given in hospital settings where emergency resuscitation equipment is available for patients succumbing to a reaction (some 26 people had died prior to the law being put in effect). EPD, on the other hand, is allowed to be administered in doctor's offices. EPD injections contain a much smaller dose level of allergenic substances than the traditional allergy shots and are considered safe for very sensitive patients. Traditional allergy shots contain dose concentrations of between 1:100,000 and 1:10. EPD contains between 1:100,000,000,000,000 and 1:10,000,000, per the 1996 Pink Book, which is similar or less than the amounts used for diagnostic skin prick testing. Anaphylactic reactions to EPD serum could exist in theory, as with any injection, but the predicted chances are extremely low.
EPD is likely the serious anaphylactic patient's best hope of living a normal life. Such anaphylactic reaction-provoking foods include peanut, shrimp, crab, lobster, and less frequently, certain other foods. This is not, however, a license to go challenge your anaphylactic trigger food. But if the patient should encounter it as hidden food they would probably handle it just fine, or perhaps have a mild headache instead of the life-threatening total collapse they used to experience.
Undefined or unknown sensitivities can be treated without extensive diagnostic identification. Needed are only tests of a few foods, a few inhalants, and a few chemicals to establish a patient's reactivity to broad categories of allergens. This eliminates much tedious skin testing.
On May 29, 1997, Marge Jones <mastent at nidlink.com> replied to a question about the effectivity of EPD on MCS [Multiple Chemical Sensitivity]:
I had an opportunity to ask your question to Dr. McEwen at a medical conference I was covering as a journalist. Here's an excerpt from that interview, taken from Issue #88 of the Mastering Food Allergies Newsletter:Question - What is the prognosis for the chemical "canary", WHOSE PRIMARY DIAGNOSIS IS MCS, but who qualifies for EPD because of some allergies? Do their multiple chemical sensitivities respond as well as the food and inhalants?
Dr. McEwen replies - "Their prognosis seems very good, indeed. My experience is in England, and we don't have such widespread use of pesticides in public buildings as you do, and I think formaldehyde is less of a problem in English buildings. Having said that, I find patients notice improvement in their tolerance to fumes first, perhaps after four injections, while they may have to wait another shot or two to gain back their foods.
"I notice another difference. When the patient has been in EPD for a year or so, and I realize the perfumes are more of a problem that I thought, and I add the fumes to their shots, then the next two shots may be rough. But by the third, they're better, and they stop noticing any difference. I don't see a fume sensitivity as separate from food, dust and pollen allergies. I see it as just part of the allergic picture, different aspects of the same problem."
Dr. McEwen put it another way in conversation. He said EPD was the ONLY modality of treatment for MCS with the potential for making people well again. Without it, severely afflicted patients have moved out of their own homes to live like a hermit, etc. EPD offers them the possibility of resuming a normal life again.
3.9 What are the side effects and downside considerations?
[Section Updated: 11/97]
The treatment does have some inconveniences in diet and environmental restrictions. Nutritional deficiencies, intestinal pathogens (such as Candida, parasites, bacteria, etc.), and hormonal dysfunction all need to be addressed, or EPD will be less effective, or perhaps fail to show any favorable response.
Side effects range from "none" to "as bad as you were without EPD or other treatments". About 20% of the patients see the side effects of a worsening of present or past symptoms. Reactions generally last 1-3 days but, on very rare occasions, have been seen to last past 4 weeks. For the long ones, see your EPD doctor to see if he can determine a method of relief. When seen, these problems generally accompany the first few shots and lessen as the treatments progress.
The good news is that there are no known permanent bad effects.
EPD does not mix well with other forms of immunotherapy. Neutralization usually must be stopped well before EPD starts. Other treatments need to be terminated before beginning EPD so the initial shots of EPD may have the patient at his lowest "raw" point. Patients may have to attempt to avoid all of their major allergens for this period. For patients who are "late responders" this may be many months down the road. For desperate patients, your doctor may be able to come up with some workarounds but they are still not always the best since many medications are known to interfere with EPD. This is a point to work out with your EPD doctor.
Patients will need to break the habits of a rotating food diet. Smaller amounts of many foods have been found to be better than large amounts of single foods ingested in a cyclical fashion.
Not following the diet restrictions and environmental restrictions outlined by the EPD doctor increases the likelihood of becoming more sensitive to the problem items for a period of time. The restrictions and requirements are aimed at maximizing beneficial conditions and minimizing detrimental conditions that could affect an EPD treatment's effects. For example, infections of any kind at the time of treatment--bacterial, viral or fungal--reduce or eliminate the benefits of a treatment. Your doctor may advise treatment postponement under such conditions. The patient guidelines in the Pink Book are there to be followed and must be followed. Another example is that some environmental exposures may leave enough allergen in your body to significantly alter the intended minute levels of allergen as provided in the controlled EPD mix. This increased body allergen level then becomes a hypersensitizing agent instead of a desensitizing agent. Your EPD doctor is the only person to decide where protocol guidelines might be reduced - ask him before changing the boundary!
The patient may have also had undiagnosed allergy problems and the diet and environmental restrictions were actually not set appropriately. He/she may become sensitive to any inhalants, foods, or chemicals. For this reason the doctors tend to err on the overly cautious side of the restrictions. Most patients do not know, and cannot name, all the sources of potential problems in their environment. Stick to the restrictions and err to the more restrictive side, especially in the first few shots. Sensitivity to pet dander is one item that catches some people in this way and inadequate environmental clean-up can cause increased problems with such things as dust, mites, and news print as well.
Sometimes patients with adverse responses quit the EPD protocol after such an event. Unfortunately they are doing themselves a disservice in that additional treatment will bring the positive results. Quitting after a negative reaction only serves to leave that allergy programmed into the system. It then takes many months (even a year or more) for the body to eradicate these miss-programmed T-cells when doing so without the aid of the next EPD treatment. The people who have quit EPD, before 6 shots are completed, tend to leave with this kind of "EPD made me worse" comments. A number of rumors have spread to this effect and they are most commonly from patients who have completed less than 6 shots. By the time a patient has completed 6 shots he generally has been through any rough spots that will be seen and will have seen favorable results.
On Jun 21, 1996, Jerry Straks <jstraks at switchboardmail.com> was writing a long story, of which this is a part:
Another "untoward effect", if you want to call it that: Once I could eat again [after EPD took affect], I found myself craving the things I could not eat for over a decade! :-) I ate too much of too many things that were unhealthy. It has taken a year, but that is wearing off now. I can willingly exclude things from my diet that I would be better off without.
3.10 Why do some people get worse before they get better? (masking).
[Section Updated: 2/97]
In some cases the full protocol may not have been followed or all infections may not have been eliminated. In other cases, while we are aware of no scientific explanation, EPD seems to "unmask" allergies or problems that were probably present but not as serious as those that triggered the decision for treatment. The "unmasking" seems to make them all equally troublesome. This is both good news and bad news. The bad news is that your life will be more complicated until EPD benefits start. The good news is that the EPD is indeed interacting with your immune system, indicating a high probability the benefits will also come. The bottom line is that you do not want to take EPD too lightly. It is a significant decision and requires a significant commitment to follow the protocol for at least the minimum time. It is not something in which to dabble for a little while and then move on.
Reportedly, Dr. McEwen has said:
EPD attacks the [allergy] matter at its root. Patients usually come to us eating a fairly restricted diet - often huge amounts of only a few foods - and many of them are "masking". This is a phenomenon in which a very allergic person does not react to an excessive quantity of their allergens - the immune system is just "swamped", or overwhelmed. These patients usually have more-or-less constant fatigue, muscle weakness or brain fag, so they know they aren't well. But when they are masking, they are not as ill as they would be if they ate less of their allergens. Also, they aren't able to make cause-and-effect connection with specific foods.EPD therapy reduces the level of allergy so that now an excess intake of allergens no longer swamps the response and the patient doesn't mask any longer - he or she can now muster a reaction. So - now foods previously thought to be safe start to upset them. And the patient's perception of this unmasking phenomenon is that his or her condition has worsened. They are going to go through a phase where their diet is a bit of a muddle, and they aren't quite sure what they can eat. They may come out the other end (following treatment) being able to eat freely all of the foods they had been avoiding, and perhaps able to eat foods they had formerly considered safe, only in smaller quantities.
When patients unmask to Candida the same sort of thing happens. Their usual Candida load starts to make them ill, but now they find that antifungal treatment helps them instead of making them ill. After that, a few more shots of EPD are needed to desensitize them to Candida so they won't need to use antifungals any more.
[Editor - from Marge Jones' Mastering Food Allergies newsletter, #88.]
3.11 How soon will I get better?
[Section Updated: 9/97]
That depends somewhat on your body and on your ability to follow the treatment protocol. Most doctors apparently request a 6 shot minimum commitment before starting the treatment so that EPD has it's best chance of getting past any problems and into the best results. People are often reporting positive effects before the 4th shot. Early responses may occur within days of the shot, may last for a few days, and then diminish. Later shots generally produce results which are observed about 3 weeks after the shot and which last longer. When the improvements lengthen to the point that you're still feeling pretty good when it's time to start preparing for the next shot, your doctor will advise you cancel that appointment and make one for the next month. This is how you lengthen the intervals from every 2 months, to 3 months, then 4, and so on.
There are four general responses to EPD treatments. A few people see an "Immediate" reaction in the first few shots. These are seen in the hours or days following the shot and last 2-5 weeks for the lucky few. The "Main Action" starts 3-4 weeks after the shot. Although each shot stimulates T-cell production, (it takes about 21 days, more or less, for them to mature and become fully functional) the surge of well-being that usually occurs at that time may be too subtle for some patients to detect until around the 4th to the 7th shots. These people often report the effect is almost as noticeable as a "light bulb being turned on". Generally by the 6th shot, most people are noting favorable response from the treatments. The "Late Response" occurs after 8-12 injections, where the earlier ones seemingly had no effect or a negative effect. For this group of people, suddenly one of the shots works well and treatment continues. A "Postponed Action" can occur 10-20 months after no apparent improvement and the shots have been stopped. The cure is often permanent but it also has a tendency to be confused with whatever other treatments are being tried at the time.
About 60% of the cases will note some positive responses, though perhaps minimal, sometime during the first 3 injections. By 6 to 8 shots people are generally seeing positive effects lasting around 2 months. Very severe illness may take 2 1/2 years to work, but these cases are very rare.
3.12 Is the EPD protocol hard to follow?
[Section Updated: 2/97]
That depends on what protocols you currently use to control your health. For people with serious problems it will certainly be different, but likely not a problem. For people with little to no restrictions, it will appear to be challenge, but after one or two shots it will become a routine that is not tough to live with.
The protocol basically revolves around a few principles. Avoid foods and environmental factors to which you know you react, or are easily acquired, or might interfere with the therapy. Oily substances, added to the skin, reduce the ability of the injection to be absorbed. You will be put on a schedule of "Do's and Don'ts" with daily check marks (things to do), x's (things to avoid), and notes defining the most effective regimen for getting EPD to work. Covered are such things as: diet, supplements, dental treatments, contraceptives, medications, extreme heat and exercise, pets and animals exposure, pollens, dust, mold, newspapers, paints, nail polish, chemicals, air fresheners, scents, perfume, smoke, business machines, toothpaste, deodorant, ointments, lotions, makeup, bath soap, shampoo, dish soap, laundry soap, stress, drugs, medications.
Actually, breaking some old habits may be a bigger problem than getting into the new one's. Eating large quantities of single foods, or eating in a rotating diet, has a detrimental effect on the EPD process. Food patients who are coming from strict diets may find the family routines at the dinner table are tough to break, especially during the transition where new foods have not yet become available as a result of EPD benefits. At such a time the doctor may suggest the patient use the Very Mixed Diet (VMD) to help get enough to eat until the EPD kicks in.
3.13 What are the critical periods?
[Section Updated: 2/97]
Most of the above "Do's and Don'ts" will be particularly important during the "critical 3 days". These 3 days are the day before the shot, the day of the shot, and the day following the shot. The second day following the shot is some times included as a fourth day. As people improve they may, with their doctor's permission, be able to reduce their observation of "the critical days" to 24 hours before and 24 hours after the shot.
The "Do's and Don'ts" chart found in the 1996 Pink Book has restrictions identified for the entire period from 11 days before the shot until 28 days following. Most of the problem x's for most people occur in the week before the shot and the week after. These include food restrictions (easier than the critical 3 days), caffeine, and medications.
3.14 Where in the world is EPD available? How wide spread is it?
[Section Updated: 2/97]
EPD has been administered in England, Canada, Germany, Norway, Italy, some other European countries, New Zealand, and the United States. There may be additional countries as well. Over 60 U.S. doctors have been trained in the technique, so it may be considered wide-spread, but access is still limited by the sheer numbers of doctors using the technique.
3.15 Can any doctor administer EPD?
[Section Updated: 11/97]
No. Physicians need to participate in a short, but very important course of training before they can obtain the necessary supplies. Doctors doing food and chemical EPD need additional training in dietary considerations and gut preparations in addition to the EPD training. Prospective patients will have to continue to seek a doctor that they can get to, who is trained in the technique. All United States EPD physicians will also be participating in the IRB study, so the medical records of all of us receiving EPD, at this time in this country, will be included in that study, anonymously of course. (We're helping to make history!)
A potential problem is that the EPD serum is not stable unless handled in a controlled manner. There are techniques of handling the vials of serum and drawing the ingredients into the syringe that are required to avoid contamination. There are also temperature considerations and the serums are shipped from the manufacturing source overnight in iced containers. The EPD vials have a limited life, even in controlled circumstances, once they are opened. These would preclude us commoners from doing shots on ourselves because of EPD reliability and cost issues. It is also a consideration that the doctors office meet the requirements for use.
3.16 Is there an EPD doctor near my town?
[Top Section Upated: 09/2006]
Dr. Shrader and LDA web site includes a list of LDA physicians.
[Following Updated: 04/02]
In September, 2000, it should be noted that patients that have never started EPD may not be accepted into the EPD program in the USA. In 2001 all treatment in the USA were stopped until the FDA paperwork was completed to the satisfaction of the FDA. The EPD approach is unique enough that it apparently doesn't fit the existing paperwork structures well. The EPD principles, working with the FDA, are apparently reviewing current law and paperwork submissions to determine the next steps for EPD research. Check with your EPD doctor for the current status if you wish to begin EPD. Some USA doctors may file hardship paperwork and thereby admit new patients.
Some USA doctors may be willing to treat patients under FDA Personal Importation guidelines. However, the patient must inquire and drive the process. It appears Personal Importation cannot be offered by your doctor or both the doctor and EPD suppliers may be considered outside the bounds of FDA restrictions for solicitation of unapproved treatments. Only the patient can ask an EPD doctor if is willing to support Personal Importation. The doctor can find further current importation information from the EPD source. Not following proper guidelines can impact any or all EPD treatments in the USA, now and in the future.
See also: Is EPD considered experimental? Is it approved by the FDA? (EPD FAQ Index).
The American EPD Society web site (if it is up) may contain a list of participating EPD study doctors or at least instructions on obtaining the names of doctors close to your location. Check here first. This source is the most accurate and up-to-date list available for the USA. See below for the UK.
A slim alternative is to search the EPD Mailing List Archives using your town name or near big city names and see if any previous responses have been posted. One of the mailing list rules has been to never post the name of a doctor (to protect any privacy wishes he may have) so this is a very slim chance.
A fair alternative is to ask the EPD Mailing List if anyone knows of a doctor in your area. Members may know of doctors and should send a response via private Email. It is very helpful, when making your request, to ask that responses be sent via private Email. TO PROTECT THE DESIRED PRIVACY OF EPD DOCTORS, DO NOT POST DOCTORS NAMES TO THE EPD MAILING LIST.
To confirm address and phone numbers, American Academy of Environmental Medicine (AAEM) includes a searchable referral database and allergy information from the view of Environmental Medicine practitioners. Note that EPD Doctors are generally a member of AAEM but not all AAEM members are EPD Doctors.
Failing these, to obtain the names of two or three U.S. or Canadian EPD physicians closest to you, send your request with a $10 check or money order with a self addressed stamped envelope, to:
The American EPD Society
c/o IRB Study: Physician Inquiries
141 Paseo de Peralta, Santa Fe, NM, 87501
It would help the Society staff make the best selections for your location if you include the names of near-by large cities. This source will have the most complete listing for the USA and Canada.
Note that there has recently been an FDA hold in the USA on accepting new patients into the USA EPD study. So the first question is as to whether the prospective doctor is accepting new EPD patients. If they will accept new EPD patients when the FDA permits. If they will accept new EPD patients even if the FDA continues the hold. If they will accept new EPD patients under FDA Personal Importation guidelines. If they will accept new EPD patients which are willing to travel out of the USA to receive the actual EPD shot.
On January 17,2002, Heather <Tsasha007 at aol.com> provided a UK reference:
If you go to the website: www.bsaenm.org.uk (dead? 04/07/03), this gives a list of all doctors in the UK and Ireland who do EPD. [Editor: see page http://www.bsaenm.org.uk/pract.html for the key to determining EPD practicing physicians. Some things at this site imply that it may not be fully up to date.] [Editor: Web site more recently may be http://www.jnem.demon.co.uk/.]
On March 17, 2000, Louise Jarman <lou at louisej.free-online.co.uk> provided info for finding EPD doctors in the UK:
If you ring the British Society for Allergy, Environmental and Nutritional Medicine. Tel No 01547 550380 they will send you a list of doctors practicing all kinds of Nutritional Medicine, including EPD and Neutralization. [Editor: try web site http://www.jnem.demon.co.uk/]
On May 12, 2000, Sue in the UK <Sue at CADMORE.DEMON.CO.UK> provided info for finding EPD doctors in the UK:
There are about 12 doctors across the UK who practice EPD. There is a list up at Dr. McEwens. If you want a number, ring there on a Tuesday or Wednesday (the only days the clinic is open) and talk to Brenda the nurse there. Tel: 01491 576314.
3.17 What is the cost of EPD?
[Section Updated: 1/01]
As of February 1997, people on the mailing list have reported the cost of EPD in a number of ways and of course reported different charges depending on the doctor. As one example, one 8 week cycle may look something like this: $73 for shot office visit and follow-up office visit (likely covered by insurance), $200 for the EPD shot (may or may not be covered by insurance), $144 for vitamins and supplements (likely not covered by insurance). The total for this patient was $417 for each shot and 8 week cycle of supplements. Special foods for the diet have not been calculated, but you are going to eat anyway, so the differential is not great. Some doctors may do additional testing before beginning with the EPD series, so talk with him about what he thinks would be necessary in your case. Typically there is no point in doing new allergy sensitivity testing since EPD treatment is not based on selecting specific serums or dose levels. Simple hay fever (NO problem with food or chemicals) may not require the supplements and may only need shots a time or two per year.
Note that the above example, based on some comments received, may be fairly representative of the high side costs. A number of people have reported somewhat less costs in late 1996 for the 8 week shot cycle. For example, Jerry Straks said he paid $200 for the shot and the office visit, plus $40 for the vitamins and vitamin B-12 shot. This was every 3 months for 9 treatments.
Note also that the economy becomes greater as the intervals between shots grow.
Considering the health benefits, and the other costs of other treatments, EPD may well be very cost effective. Considering the cost of most medical procedures for problems which are treatable by EPD, insurance coverage notwithstanding, EPD may be very cost effective. Over the long term comparison, EPD holds a ray of hope to stretching out the treatments and possibly being able to get off of them all together. Many other treatments only offer reduction of symptoms, not a "cure". Consider the health benefits, and no cost, if/when they are no longer needed! With the good-to-excellent results that have been documented, EPD is more effective - and more cost effective - than almost any other modality of treatment. This is especially true when people have been going from doctor to doctor, trying anything that sounded promising, looking for relief from their symptoms - sometimes for decades. Don't get hung up on the cost issue alone.
For patients concerned about the cost, it is wise to inquire of your EPD doctor about each of the items mentioned: office visits, lab tests, shots, supplements, tests and preparations.
On Jan 25, 2001, Hilda <hildasimmons at home.com>, updated with:
Yes, my shot is $300. That is just for the shot. No I.V. or anything else. (I can't take the I.V. of vitamins/minerals...made me sicker.) I live in the Dallas/Fort Worth area and see a doctor in the area.
3.18 What is the difference between the USA (Dr. Shrader) protocol and the England (Dr. McEwen) protocol?
[Section Updated: 09/06]
EPD is no longer used in the USA as importation was stopped by the FDA in 2002. LDA is the closest USA equivalent available and follows similar treatment protocol. EPD is currently in use in Canada, Europe, and a number of other countries.
The following is text from pre-2002:
First it should be said that the two doctors do not make anything of the minor differences in their protocols. Regarding 2 month vs. 3 month intervals between shots (for beginners), McEwen just reportedly shrugged and laughed and said, "You Americans are an impatient lot!". The two month interval may offer promise of earlier data for the study or perhaps is better for the statistics. In effect, what is reported in this section may be interesting in understanding different people's comments but are basically non-issues.
On Oct 21, 1996, Jozsef A Toth <jtoth+ at pitt.edu> wrote:
When I was at the Dr. office getting my injections, the "Official" EPD Dr.'s guide dated Sep. 1996, authored by L McEwen was available for me to browse. I scoured the pages that were of interest to me and came up with the following nuggets that are not present in the Pink Book (remember McEwen (in UK) and Shrader (in USA) differ on certain aspects of the protocol.--- in UK, frequency of shots is every 3 months, in USA every 2 months
--- Vitamin C: 3 grams daily for 2 weeks before, .5 gram daily for FOUR weeks after, and 1 gram daily for the rest of the time.
--- Cross reactions: all grains cross-react, so it's a good idea to stay away from all grains, if you have any allergy, for the week before and two weeks after. Banana, oranges, and other kinds of fruits were also mentioned, also nuts. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
--- Although in Pink Book, regular [white] potatoes should generally be avoided for 24 hours before until 24 hours after the shot. During this critical time, the diet should be kept to the absolute bare minimum involving only the simplest and least allergenic of foods (e.g,. lamb and sweet potatoes.) Glycerin, fructose, etc. were mentioned for the most sensitive of patients taking small doses every couple of hours during the 24 hours before and 24 hours after.
--- In general, the "critical period" is defined to be the 24 hours before through the 24 hours after (UK) as opposed to the day before, day of, and day after (USA). I assume that the latter is probably the default in either case; just to play it safe.
--- If chemically sensitive, "Whiffs" of chemicals/perfumes/etc. will probably not upset the treatment, sustained exposures will. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
--- During the critical period, 30 mg. doses of hypoallergenic caffeine (UK) 50 mg. (USA) can help with the headaches. Some other drugs were also mentioned, the ones that are articulated in the Pink Book.
--- Various response curves over a 3 year period were shown (with 3 month intervals of treatments). There were two primary types that I can recall, which are also shown in the Jan. 96 Edition of the Pink Book; which I cross-referenced when I could while I was scouring. The first curve shows an immediate improvement after the first couple of shots (25-50 percent better) and then uphill from there. The second curve shows a gradual improvement after 1.5 to 2 years. In either case the asymptote [near flat line end portion] of the curve is after a couple of years at 75 to 100 percent better. These curves are based on self-reports of presumably thousands of EPD patients. At least 3 other kinds of curves were shown with various "DIPS", but I can't remember the specifics. All of the curves end up with the same result after a couple of years: 75 to 100 percent improvement. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
[Editor - Thanks for the sneak peak Jozsef .]
3.19 How do I decide if EPD treatment is for me?
[Section Updated: 2/00]
Do your homework. Learn as much as you can so you can make an informed decision. No one can make this decision except you and your doctors. Seek your doctor's advice! Seek an EPD doctor's advice! Unfortunately your current doctor may have never even heard of EPD so the final decision completely ends up to be your decision. Even if you choose not to do EPD after your research, it may be worth finding an EPD doctor with which to discuss your particular situation.
Having said that, here are some considerations: Are your allergies or sensitivities...
1. life threatening? 1. causing secondary (resultant) damage to other body organs? 1. continuing to get worse without any hope of otherwise known control? 2. conflicting with your ability to earn an income? 2. conflicting with the desired operations of your family or household? 2. a negative impact on your year round life style? 2. being treated by treatments that are marginal or ineffective? 2. producing long term symptoms that are difficult to treat? 3. from so many sources that it's hard to treat each one? 3. causing so many problems or symptoms that it's hard to treat each one? 3. costing more to treat currently than the cost of the EPD treatments? 3. being treated by methods that are harder to follow than the EPD protocol? 3. treatments holding any promise of being stopped without recurring symptoms? 3. expecting to be seriously impacted by a relocation, new house, new office, new job, new environment coming in the future? 4. a nuisance to your ability to earn an income? 4. limiting your ability to pursue discretionary or fun activities you desire? 4. covered by your insurance (is EPD covered)? 4. a nuisance to your life style more so than the EPD treatment protocol? 4. bad, but holding steady with current treatments? 4. causing recurring problems which are treated but then return? 4. aggravated by a broad group of sources, even though the symptoms are not severe. 4. current treatments worth giving up for an 80% chance of 80% improvements or better by EPD? 5. treatable with a few antihistamines, decongestants, or other drugs? 5. seasonal or only lasting for a short time. 5. avoidable by staying away from a few foods, chemicals, or inhalants.
In this list of questions, the earlier you started to answer "yes" the more likely you should consider EPD treatments. The entries have been roughly grouped by considerations of: major health, health and lifestyle, cost versus need, nuisance levels.
Finding an EPD doctor may be a determining factor to deciding to do EPD in some locations. See also above: Is there an EPD doctor near my town? (EPD FAQ Index).
In England traditional allergy shots (immunotherapy) have been legislated to only be administered in hospital settings where emergency resuscitation equipment is immediately available to handle problems such as anaphylactic shock. EPD, not having a history of provoking strong reactions, is freely used in doctors office settings.
If you would like some "non-scientific" EPD stories including successes, struggles, and failures, a collection may be found at: http://www.dma.org/~rohrers/allergy/epdstory.htm.
3.20 Will EPD affect my ability to work?
[Section Updated: 2/97]
There are two considerations here. Avoiding potential problems and becoming sick from the shot.
On 11 Jun 1996, MARTHA RALL <mrall at kumc.edu> said:
EPD should not interfere with your ability to work, unless you get some unusually SEVERE side effects with it. If you work in a moldy or chemically laden environment, you may need to take 1-2 days "off" [holiday] during the critical 3 days surrounding EPD. I get my shots usually Saturday morning, so I can be "sick" [on holiday] Friday, Saturday & Sunday.
On Jan 27, 1997, Marge Jones <mastent at enaila.nidlink.com> said:
Based on personal experience, I would have to answer, "It might, especially early on". I don't think I had an especially severe reaction as the quote from Martha Rall suggests, but I was a limp rag doll without energy for two weeks following shot #3. Bummer. It was the only one to hit me that way. I could not have worked at a job - yet it wasn't considered a "severe" reaction.
3.21 What is LDA? Is it like EPD?
[Section Updated: 2/00]
On May 15, 2002, Laura Toms <laura at
lauratoms.com> commented on a possible EPD USA alternative being created
Named LDA (Low Dose Allergens):
I did some research and found out some interesting things that may prove to be tremendously good news to all of us in the US, and I verified that it is OK to post this information to the EPD list.Dr. Shrader has been working for the past year on serum based on FDA approved materials, quite different than EPD, but using his best judgment based on his experience. It's called LDA for Low Dose Allergens, has a different base and different blend of allergens, all of which are already FDA approved and perfectly legal in this country. The mix includes more foods and perfumes, I understand. It's being compounded by a pharmacy in the US, and depending on the results of the preliminary tests, it may become available soon for general use in this country.
The good news is that the first round of tests looks quite impressive, with more positive results even than EPD. They do not have longer-term data on it, though, so they are being cautious for the moment. It should also be less expensive than EPD, and while I don't know this for sure, I would assume that most insurance would cover it since it's comprised of approved allergens. This is all very good news.
Longer term results will be evaluated within the next few weeks, and if all still looks good, it should become available through your physician.
The EPD trial for simple hay fever allergens is unaffected. This effort will go forward as planned. Typically it takes more than 5 years for a new product to get through the FDA's approval cycle, however, so it may be some time before EPD is available here.
There is, I gather, some tension between US and European forces over the development of LDA. That's certainly understandable. I would ask everyone to be sensitive to this issue. We owe a tremendous amount of gratitude to the McEwens for their development of EPD. For people who live in the US and want to continue with EPD, they can continue in Canada as they have done so far.
My own allergies have continued to get worse and worse since I had to quit EPD 3 years ago. If LDA becomes available soon, I will be one of the first people in line to get it. [Editor: I wonder if the terms "Generic EPD" and "USA EPD" refer to LDA.]
On May 28, 2002, Laura Toms <laura at
lauratoms.com> added information, reportedly provided by Dr. Shrader,
concerning LDA:
LDA is not much like EPD. I chose many different components at different concentrations than those in EPD. There are many additions and subtractions, and I revised all of the mixes, both as to content and the various concentration of individual components quite considerably. The activator can no longer really be considered to be the beta glucuronidase, although it is present. College Pharmacy obtained the components in the LDA from pharmaceutical sources. I did draw at least upon the theory published in Dr. McEwen's and Dr. Eggar's papers to produce LDA for my patients.
The material appears to be significantly more "reactive" than EPD was, immediately and in the first week after it's been given, since the skin response is quite pronounced in all patients, unlike the very minimal skin response patients had when given EPD. This skin response cannot be accounted for by the strength of any single component, since doses of each component are far, far lower than could even theoretically do this. So the reason for this remains unclear. In the several months I've been using the material, my patients have not experienced any adverse side-effects. The short term pattern seems to be present, yet it's still too early to be certain of the longer term pattern. This early response pattern is one difference I was trying to achieve, since I had no desire to "copy" EPD. A long term response pattern could occur, but if and when it does, I won't really be able to discuss it other than in discussions with physicians.
You must remember that this material is not a commercial product like EPD was, but it must be compounded specifically for my patients by College. I must write a prescription for my patients who receive LDA. I asked College to compound LDA specifically for me to use for specific patients. Certainly, if some other physicians trained to use this type of ultra low dose material wish to use it, by prescription, for their patients, they would likely be able to do so. However, neither I nor College can "promote" LDA, nor can I make any claims in regards to its efficacy, since this is a compounded product and not an FDA-approved product. There's a big difference.
I hope this clarifies what we're doing. It was my hope to offer those patients who lost their EPD something that might be a viable alternative. Only time will tell whether this might be true. Thanks for asking me about it.
||||| EPD FAQ Index |||||
4.1 Do I have to go through a lot of testing before beginning EPD?
[Section Updated: 11/97]
Most doctors will do some testing and will certainly record your history to determine if indeed you have allergies to pollens, foods, and/or chemicals. Generally, it need not define all the specifics but simply determine categories so he can pick the EPD serums for your case. Traditional tests may be used where available. Alternative tests are possible if desired. Much of this depends on the doctor and how much he wants to document. EPD is being studied primarily as an allergy treatment in the USA even though there are quite a number of other immune problems that are significantly helped. Hence, the doctors records will likely include some allergy details and test results should his records be called for medical review.
Depending on the doctor and the patient case, some doctors may also do some testing for parasites, Candida, yeast, or other gut problems which may interfere with the EPD treatments. Other doctors, or in other cases, the doctor may delay these until EPD is not producing good results and then go looking for the interference.
4.2 What can you tell me about the actual EPD injection?
[Section Updated: 11/97]
In the U.S. EPD is generally administered by a shot injected sideways just under the skin on the inside of the forearm. The needle is inserted sideways, so the shaft is almost laying flat on the skin. The serum is injected just under the skin. This leaves a welt not unlike a large mosquito bite which subsides in a half hour or so. The needle is quite small and feels like a mosquito bite or a bit worse. The serum is of small volume but produces a bit of a sting which feels much like a deep paper cut. In a few seconds the pain subsides. It is a bit unnerving for children and makes most adults wince for a short period of time. Fortunately it is quickly over, though a few people have noted it lasting up to 2 minutes.
Some patients and/or physicians prefer multiple shots instead of mixing it all into just one injection. That is, they may put the basic EPD mixture in one arm and additional Inhalant Concentrate, for example, in the other. Patients with severe chemical sensitivities may also elect to have a separate injection of formaldehyde. As time goes on, variations may evolve in the basic technique.
For some patients with anaphylactic problems, and for a few other cases, a "cup" method is used. This technique includes a light scratching of the skin and affixing a small funnel shaped device to the skin surface. The EPD serum is dropped into the cup and absorbed into the skin through the scratched area.
The minimum spacing between EPD shots is 8 weeks. Doctors will generally start on an 8 week or 12 week cycle. Any closer than about 7 weeks will produce complications and perhaps increased sensitivities. After a while, maybe 6 shots, the EPD effect lasts longer than the 8 weeks and shots are postponed for longer periods. Eventually they stretch to 6 months or a year and perhaps to the point of never needing another. The "normal" routine is something like 16-18 shots over about 5 years, close at first, spread at the end.
The shot is done at the EPD doctors office. In part, the doctors want to see the patient and be aware of any problems or potential problems so that EPD is not miss-used and the protocol is being followed. Being in the office helps to keep the FDA/IRB study database information as clean and as reliable as possible. Possibly the EPD serum will only be shipped to approved doctors who have covered the requirements for the American EPD Society. Doing the shots in the doctors office also makes medical help available in the event of any reactions to the treatment.
Patients cannot self inject for a number of additional reasons. There is a potential problem that the EPD serum is not stable unless handled in a very controlled manner. There are techniques of handling the vials of serum and drawing the ingredients into the syringe that are required to avoid contamination. The serum is not protected by any preservative because the preservative would become an active element of the shot serum. Additionally, the included serum substances are of such small quantities that contamination may upset the balance or the contamination itself become an active agent in the serum. There are also temperature considerations and the serums are shipped from the manufacturing source overnight in iced containers. The EPD vials have a limited life, even in controlled circumstances, once they are opened. These would preclude patients from doing shots on themselves because of EPD reliability and cost issues.
4.3 I've had more allergy related problems, instead of fewer, since my last shot - what has happened to me?
[Section Updated: 11/2001]
You may have sensitized an allergy by encountering the trouble source during the critical period. In other words, intentionally or unintentionally, you have not followed the guidelines of "Do's and Don'ts". Perhaps you have encountered something you thought you were not allergic to but actually were. Now you are more sensitive to it for a period of time. Hopefully the time will not exceed a few days. Next time be more careful during the critical periods and even extend them. Some people see foods fall out in this fashion and extend the allergenic food restrictions for a week, 2, or even 3, after the shots. Environmental chemicals are tougher in this but should be considered as well if you have any reason to believe you are chemically sensitive. The EPD shot contains minute doses of many allergens. If you have significant environmental exposures near the time of the shot, your body may actually have much more of an allergen than provided by the EPD dose and hence the total is a hyper sensitizing dose instead of a desensitizing dose.
Possibly you still have yeast, bacteria, parasites, Candida, or other gut problems which have not been cleared with the pre-shot preparations. Some of these remnants may have produced your sensitivity and are still active in your gut. You may have to go through additional testing and more intensive gut preparations. If the gut dysbiosis problems are not covered, it is apparently possible to become sensitized to these organisms as an allergen. A possible tip-off to this problem is that the allergy symptoms have not seen any improvements even after 3 or 4 shots. Note that foods and chemical sensitivities may take longer. See also: Do I really have to take the gut preparations for fungus and the like? (EPD FAQ Index).
In some people it is apparently possible to "overdose" the EPD injection strength. For these reasons you need to discuss all of your symptoms, including the times they arrived and departed, as well as the severity of each symptom, with your doctor. Since the symptoms somewhat mimic gut problems it may take a review over a couple of shots to determine the root cause of such problems. One tip-off to overdose is having one or more favorable shot responses and then getting worse with successive shots. To check for this the doctor may postpone a subsequent shot and ask the patient to observe how the negative effects rebound or dissipate over the longer period of time. If a series of shots continues to make your symptoms worse, discuss with your do