Helminthic therapy support groups

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    Since 2003, when TSO became the first helminth to be made available for use by self-treaters, knowledge about this subject has evolved continuously. As a result, some of the information in the groups listed below has become obsolete, so details in older posts should not be relied upon, and details should always be checked against the information in this wiki, which is kept up to date.

    General discussion groups

    • Helminthic Therapy Support (Facebook) - 8,490 members. A vibrant and friendly community with many experienced and knowledgeable members.
    Due to the high success rate of helminthic therapy (approximately 75% eventually experience health improvement), this group’s membership is constantly revolving. People join, spend time researching the material in this wiki, ask questions in the group, and then order worms. Once their health has improved, they no longer need the group so typically reduce their involvement, and many actually leave the group to move on with their lives and enjoy the benefits of their improved health. Consequently, the current membership represents only a fraction of the global community of helminthic therapy self-treaters, and the members who are active at any one time tend to be people with more severe, complex or longstanding health issues who need help with optimising or troubleshooting the therapy. The guide, How to Get Help, has suggestions for best use of the group.

    Helminth incubation group

    • Helminth Incubation Group (Facebook) - 1,100 members. A community of helminth growers who are cultivating NA, HDC and, more rarely, TTO.

    For detailed instructions on how to cultivate NA, HDC and TTO, see Helminth incubation methods.

    Support group welcome message and guidelines

    If you are a new member of one of the helminthic therapy support groups, we extend a very warm welcome to you!

    1. We have ALL the information you need!
    This Helminthic Therapy wiki is the world’s largest database of information about the therapy.

    2. Please do not post to the group until you have at least read the introductory page.
    This includes everything you need to know in order to understand and get started with this therapy.

    3. Before posting a question, search both this wiki and the group’s post archive.
    Most questions about this therapy are answered in this wiki or in past comments to the group. Use the search box available on every wiki page, and the group’s search tool.

    4. We only accept posts about helminthic therapy.
    We are not concerned with any other topic, or with any form of parasite other than the four species of therapeutic helminth available from the helminth providers, unless research has shown that another species, or its products, may have a therapeutic effect.

    5. Please do not ask for helminth provider recommendations.
    The selection of a helminth supplier needs to be approached on an individual basis, bearing in mind the customer's location, which organism they are seeking and which pricing and payment options they prefer. All the details required in order to make a selection are on the following page.

    6. Never discuss the locations or shipping arrangements of the helminth providers.
    This is essential to protect the providers from unhelpful regulatory attention. If you need details that are not in the wiki, contact the provider directly.

    7. Never reveal details about helminth shipments or their contents.
    Details or photographs of packages, or their contents, could be used to identify and block future shipments to you and other self-treaters.

    8. This group is moderated.
    Moderators will endeavour to ensure that posts are on topic, and that the information in them is accurate. Members may occasionally be asked to edit a post or, in some cases, a post may be removed. Members who block a moderator or admin are removed from the group.

    9. Please read the rest of our welcome message, which continues below.
    The following details include abbreviations that we use, plus information about other important matters that will help you and others get the most from group membership.

    Personal privacy on Facebook

    We are a “Private” group, which means that no one outside the group can see our members’ posts. However, anyone can see the group and its members in News Feed, searches and other places on Facebook, and Facebook does encourage people to join the same groups as their friends, which it does by showing them the member’s avatar above the names of groups they are in. Unfortunately, this feature can’t be turned off, even if members prevent others from seeing the groups they’ve joined. So, if you think this might create a problem for you, it may be worth having a response prepared in case you’re asked what the “Helminthic Therapy” group is about. This name is the only clue that others will have about what kind of group it is, but anyone who is still concerned about their friends seeing this can rejoin the group after creating a new Facebook account using an alias.

    To review the privacy settings for a Private group, see this page in the Facebook Help Centre. 


    Abbreviations we use

    HD - the rat tapeworm, Himenolepis diminuta
    HDC - the cysticercoids (larvae) of the rat tapeworm, Himenolepis diminuta
    HK - hookworm, referring to the human hookworm, Necator americanus
    HT - helminthic therapy
    HW - hookworm, referring to the human hookworm, Necator americanus
    NA - the human hookworm, Necator americanus
    TS - the porcine (pig) whipworm, Trichuris suis
    TSO - the ova (eggs) of the porcine (pig) whipworm, Trichuris suis
    TT - the human whipworm, Trichuris trichiura
    TTO - the ova (eggs) of the human whipworm, Trichuris trichiura
    WW - whipworm, usually referring to the human whipworm, Trichuris trichiura, but, alternatively, Trichuris suis

    We have ALL the information you need!

    1. Helminthic Therapy wiki.

    All the wiki’s pages can be read in any language by using the Translate tool at the foot of the left-hand sidebar on any page.

    New members will sometimes reject the material in the wiki, saying that they prefer to have feedback from “real people” with “real experience”, but this is, in fact, exactly what the wiki offers. The site’s contents have been built using the shared anecdotes of thousands of helminth self-treaters, many of whom have now left the group after having learned how to use helminths to successfully manage their respective conditions. By collating all this past experience, the wiki offers many more examples of the real experience of real people than are available at any one time in the group. The site is updated continually and new details are added immediately they appear in the group.

    Quotein.gif
    The first thing one should do when considering helminthic therapy is read the Helminthic Therapy Wiki. I read pretty much every page on this wiki before reaching out to order. [1]
    Quotein.gif
    The only bumps I have had as a self treater, was when I didn't check the wiki. [2]

    2. Group files section. This contains a few additional materials that may be of interest to members.

    NB. When posts written before February 2017 refer to documents in the files section that can no longer be found, their contents will have been transferred to this wiki, which contains the latest details about everything.

    Obtaining helminths and protecting the supply

    There are complex differences between the products and services offered by the helminth providers, so the selection of a provider needs to be approached on an individual basis, according to which organisms are most likely to meet the individual self-treater’s specific needs, which companies sell these particular worms and will ship them to the self-treater’s locality, and which services and pricing options will be most appropriate to them. Seeking, or offering, a provider recommendation is not helpful because everyone’s health issues, needs and circumstances are different. We therefore request that you DO NOT ASK THE GROUP FOR A PROVIDER RECOMMENDATION, and not just for the foregoing reasons, but also because doing this could attract comments from other members who may not have read this document and whose responses may place one or more of our providers at risk. (There’s more about this below.)

    All the information necessary to make an informed choice of provider is available from the following two pages in this wiki.

    • Helminth Providers. (It’s important to read the entire page and not just the list of companies.)

    Since the FDA has issued an Import Alert effectively banning the shipping of all therapeutic helminths into the US, and since the Customs departments in some other countries have occasionally intercepted and destroyed packages that they believed contained helminths, we need to avoid revealing details about the shipping arrangements of the helminth providers, especially the locations they ship from and the physical appearance of their packages. Details or photographs of packages, or their contents, could be used to identify and block future shipments.

    While some providers are open about where their labs are located and where they ship from, others need to keep these details strictly under wraps. Revealing the whereabouts of a provider’s base could lead to that company being closed down and their customers losing access to the helminths they need. It is therefore absolutely essential that members NEVER REVEAL THE LOCATION OF ANY PROVIDER IN POSTS TO THE GROUP, AND NEVER ASK QUESTIONS THAT MIGHT LEAD OTHERS TO DO THIS.

    If you ever agree to be interviewed about your treatment by a representative of the media, please don’t reveal where the packages you received were shipped from and, ideally, don’t even mention the provider by name. Just say that you got your worms from a “commercial helminth provider”.

    In view of the above, we generally don’t discuss individual providers in the group unless someone has a question that is not answered on the Helminth Providers and Helminth Provider Reviews pages of the wiki, or some new information has become available about the services they offer - such as the addition, removal or improvement of a service, changed prices, or a website update, etc. - or unless the quality of a provider’s service has fallen significantly below an acceptable standard. In these cases, it’s helpful to let other members know about these details but, when doing so in posts, it’s important to concentrate on the facts rather than express subjective opinions.

    It isn’t helpful to draw attention to isolated incidences of delayed emails or deliveries, or hookworm doses that are not viable on arrival, since these are all inevitable from time to time and not a reflection on the quality of service offered by the provider who sent them.

    Group focus

    Our focus in this group is on the science, management, experience and results of helminthic therapy. Our aim is to share, and add to, what is known about helminthic therapy with a view to improving our own heath and also helping others to achieve their respective health goals. We therefore welcome comments from anyone with an interest in helminthic therapy, whether researchers, clinicians, providers or self-treaters.

    Due to the fact that helminthic therapy is effective in approximately 75% of cases of inflammation, autoimmunity and allergy, most of our members eventually reach a point where they no longer need our support, and leave the group. The result of this is that many of our active members are still in the early stages of the therapy, so the discussion tends to centre around trouble-shooting - managing any initial side effects, establishing an effective dosing regimen and supporting new members through the often lengthy wait while their worms begin to work. This can unfortunately give new members the impression that this therapy is troublesome, difficult to manage and not very effective, but this is not the case, as can be seen very clearly from reading the contents of this wiki.

    We are not concerned with parasites other than the four “therapeutic” species available from the helminth providers, unless research has shown that another species may also have therapeutic effects. Posts about non-therapeutic parasites are generally not helpful, especially when these link to examples of sensationalist journalism and/or scary-looking photographs. In fact, these can be disturbing to members who have an aversion to worms and who may already be struggling to come to terms with the nature of the therapy.

    Post management

    In this internet age, information spreads like wildfire, and incorrect information about helminthic therapy can potentially threaten people’s safety and possibly reduce their chances of success with the therapy. Moderators will therefore endeavour to ensure that the information in posts is accurate. This will usually be accomplished by posting responses containing correct details, but it might occasionally be necessary to ask a member to edit a post or, in some cases, a post may be removed altogether.

    Any posts of a commercial nature, or seeking charitable donations, will be removed, as will those that are not directly about helminthic therapy. Posts about vaccination will also be removed because these invariably invite controversy, can cause conflict, and may threaten the future of the group. There is a page in this wiki on helminthic therapy and vaccines for those who want information about this. 


    We are not a parasitology group, nor a microbiome or autoimmune disease group, so we only accept posts about these topics if they fall within the context of helminthic therapy, or are offered as constructive suggestions to a specific member to help with the health problems for which they are using helminthic therapy.

    Members who wish to post questions relating to their own therapy should be aware that group members cannot give medical advice, and that such questions are best addressed in consultation with a personal physician and/or a helminth provider.

    When posting comments or questions about your personal experience with HT, it will greatly help other members if you include all of the following details.

    • disease(s) being treated
    • details of other treatment modalities that you are using concurrently with HT
    • species of worm used
    • total length of time that worms have been hosted
    • rough dates of doses, or the length of the intervals between them
    • size of doses

    When posting updates about your progress, it helps other members to follow the sequence of events if all the updates are added to a single thread. (Clicking on the date of a post will reveal its URL in your browser. This can then be copied and saved for future use whenever you want to add updates to that post.)

    History of the helminthic therapy groups

    Helminthic therapy became a reality in 2003 when the first helminth was made available commercially for therapeutic use. After a period of development commencing in the mid 1990s, the pig whipworm, Trichuris suis, which is sold as microscopic ova and referred to as TSO, was introduced for sale by entrepreneur Detlev Goj. Initially, TSO was sold through Goj’s first company, Ovamed, but is now supplied by Tanawisa.

    The next helminth to be made available for therapy was introduced four years later, and this was the human hookworm, Necator americanus, known as NA. This enterprise brought together two men: Garin Aglietti, a former medical student, and Jasper Lawrence, who was looking for new opportunities following the collapse of his marketing agency.

    Together with Marc Dellerba - a clinical scientist and Lawrence’s brother-in-law - Aglietti and Lawrence formed Autoimmune Therapies (AIT), which began selling NA larvae from the clinic of a Mexican doctor, Jorges Llamas, in Tijuana. However, it wasn’t long before Aglietti found it impossible to work with Lawrence and, in 2008, left to form his own company, Worm Therapy while Lawrence continued to run AIT from his home in the US, supported by UK-based Dellerba.

    Soon after the formation of AIT, Lawrence started a discussion group, the Helminthic Therapy forum on Yahoo, which was the first online meeting place for those interested in this therapy.

    In 2009, AIT began offering the human whipworm, Trichuris trichiura (TTO) in addition to NA, and, shortly after this, Lawrence persuaded a number of regular contributors to the Yahoo forum to accept blogs that he created under the AIT umbrella. One of these bloggers was John Scott, who had successfully put his Crohn’s disease and severe food intolerance into remission using NA purchased from AIT. Scott had also begun advocating for helminthic therapy elsewhere online, and, after being asked to help moderate the Yahoo forum in June 2010, assumed ownership of the group a year later when Lawrence lost interest in social media and indicated that he was considering deleting the group.

    Someone else who was to play a significant role in the online helminthic therapy community for several years was a systems administrator from New York who created a Facebook account in the name of “Herbert Smith”. After joining the Yahoo forum in 2008, Smith told Scott that he believed helminthic therapy was ripe for monetisation, and subsequently struck a deal with Lawrence whereby he would receive a commission whenever someone he had referred to AIT followed through with a purchase. Once this deal was in place, Smith began to vigorously promote helminthic therapy, and, in November 2010, created the Helminthic Therapy Users Discussion on Facebook.

    Smith went to considerable lengths to promote himself online, creating accounts for his alias on Yahoo, Facebook, LinkedIn, Pinterest and elsewhere, before “friending” hundreds of people on Facebook and adding them, sometimes even without their knowledge, to his group.

    The relationship between Smith and Lawrence broke down when Lawrence discovered that Smith was not using his real name in his dealings with the people he approached, nor telling them that he stood to benefit financially from his relationship with them. But, when Lawrence pulled out of the deal, he failed to pay Smith what he was owed, whereupon Smith began a campaign of relentless disparagement of Lawrence and AIT.

    Thanks to Smith’s promotional efforts, his Users group had, by then, become the most active helminthic therapy group on Facebook and was increasingly used by clients of AIT as well as those of Worm Therapy, which Smith began to promote in preference to AIT. However, Smith’s strident partisan position polarised the community and left many members of his Users group feeling uncomfortable, with the result that several of them approached Scott with a request for a new “provider-agnostic” group on Facebook in which the conversation would focus on the therapy itself rather than on those providing helminths. In response, Scott created the Helminthic Therapy Support group in March 2012 - the first truly independent group run by and for the entire helminthic therapy community.

    A fourth therapeutic helminth species was introduced in 2013 by the late Don Donahue, a medical doctor from the US who founded Biome Restoration to supply the cysticercoids of the rat tapeworm, Hymenolepis diminuta, known as HDC. Donahue brought in Dellerba - who, by this time, had already left AIT - and Judy Chinitz, a nutritionist and long-standing advocate for helminthic therapy, to run the company’s laboratory and customer services department respectively. Chinitz remained with the company until Dec 2021.

    In March 2014, an enthusiastic user of HDC created the Hymenolepis (HDC) User Discussion and Support group on Facebook to share experience with the new species but, like several other helminthic therapy groups that were created for specific purposes, this only ever gained a very limited membership and has since been deleted.

    Smith continued to cause discord within the helminthic therapy community until Facebook discovered that his identity was fake and, in late 2016, deleted his account. This action removed every shred of evidence from the platform that “Herbert Smith” had ever existed, and the Users group he had created, and once so assiduously nurtured, fell into disuse as people turned instead to the Helminthic Therapy Support group.

    With the generous help of an IT technician, who wished remain anonymous, Scott created the Helminthic Therapy wiki at the beginning of 2017 to accommodate all the data he had mined over the previous 7 years from the available science and posts to the Yahoo Helminthic Therapy forum, the Facebook Helminthic Therapy Support group and elsewhere. Around the same time, several new helminth providers began selling individual doses of hookworm larvae, thus freeing self-treaters from reliance on the long-term contacts by which AIT and Worm Therapy had previously sold this organism. The combination of easier access to NA with the free availability in the wiki of detailed information about its use, ushered in a new chapter in the story of the therapeutic use of hookworms.

    Easier access to NA at reasonable prices also greatly reduced activity in a small Hookworm Donors group that had been created on Yahoo in early 2013 by several Australians to facilitate the sharing of hookworm larvae. This group, which had already become dormant as a result of the disappearance of its owner and a loss of interest by its moderators, was effectively closed in Dec 2019, when Yahoo removed all user content from its groups and reduced them to email lists. This action by Yahoo also stripped the archive of 11,000 posts from the Yahoo Helminthic Therapy forum, which finally disappeared in Dec 2020 when Yahoo closed down its groups operation.

    The groups that exist today are listed at the top of this page. The Helminthic Therapy Support group on Facebook meets the needs of users of all four helminth species in an atmosphere free from both commercial bias and manipulation by those with personal agendas. However, increasing censorship on the part of Facebook, and the platform's unjustified deletion of the accounts of several HT community members, necessitated the creation of the Helminthic Therapy group on MeWe in late 2020 as a venue for those who wished to leave Facebook. There is also a small Helminthic Therapy group on Reddit, and the first group for French speakers, which was founded on Facebook in August 2021, Helminthes thérapeutiques. The more specialised needs of those who are growing their own helminths at home are met by the Helminth Incubation group on Facebook. Groups not listed above have either been archived or deleted.

    See also

    The full, detailed history of this therapy.