Wednesday 8 May 2024

Immunotherapy from the desert


Today’s post revisits the idea of using immunotherapies to treat autism.

Some readers of this blog are already doing this and a significant percentage of those are using IVIG.

Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states.

IVIG is not a precision therapy, it is more a case of when all else fails try IVIG.

In the United States it seems that many insurance companies will cover the cost of long-term IVIG therapy. In other countries the cost greatly limits the use of this therapy.

An interesting observation is that IVIG products can vary significantly in their potency, depending on where they are made. Several readers of this blog have noted this.

I attended the Autism Challenges and Solutions conference recently in Abu Dhabi. I did have a chat with Laila Alayadhi, a researcher and clinician from Saudi Arabia who has been publishing papers about autoimmunity in ASD for decades. She also published a series of studies that examined the potential of camel milk as a therapy. She examined both changes in biological markers of oxidative stress and inflammation as well as measures of autism severity.

Her most recent study is here:-


Comparative Study on the Ameliorating Effects of Camel Milkas a Dairy Product on Inflammatory Response in Autism Spectrum Disorders

The link between nutrition and autism spectrum disorder (ASD), as a neurodevelopmental disorder exhibiting impaired social interaction, repetitive behavior, and poor communication skills, has provided a hot point of research that might help use nutritional intervention strategies for managing ASD symptoms. This study examined the possible therapeutic potency of raw and boiled camel milk in reducing neuroinflammation in relation to behavioral characteristics. A blinded study was conducted on 64 children with autism (aged 2–12 years). Group I (n = 23) consisted of children who received raw camel milk; Group II (n = 27) comprised children who received boiled camel milk; and Group III (n = 14) comprised children who received cow milk as a placebo. Changes in plasma tumor necrosis factor-alpha (TNF-α) as pro-inflammatory cytokine in relation to behavioral characteristics evaluated using the Childhood Autism Rating Scale (CARS), Social Responsiveness Scale (SRS), and gastrointestinal (GI) symptoms before and after 2 weeks of raw and boiled camel milk therapy. Significantly lower plasma levels of TNF-α were recorded after 2 weeks of camel milk consumption, accompanied by insignificant changes in CARS and significant improvements in SRS and GI symptoms. Alternatively, Group III demonstrated an insignificant TNF-α increase without changes in CARS, SRS, and GI symptoms. This study demonstrated the positive effects of both raw and boiled camel milk in reducing neuroinflammation in patients with ASD. The improvements in the SRS scores and GI symptoms are encouraging. Further trials exploring the potential benefits of camel milk consumption in patients with ASD are highly recommended.



Apparently camel milk tastes just fine, although Dr Alayadhi told us she had never tried it prior to her research. She has shown than both pasteurized and raw milk are equally effective. I did ask her about other types of milk like goat’s milk and she said they had tried other milks and that only camel milk has shown the immunomodulatory effect.  When asked how much you need to drink, the answer was three glasses a day.

The Dentist

I did chat to another Saudi professor, a pediatric dentist, who gave a presentation about treating children with ASD.  Having had some pretty bad experiences with getting dental treatment and then overcoming them, I did feel I had something in common with Ebtissam Murshid.  I did catch up with her later and shared details of the D-Termined program created by US dentist David Tesini. It is a video training program for dentists how to treat kids with autism. I have written about it previously in this blog. Tesini very much tries to make the visit to the dentist fun, with lots of distractions in his treatment room. Murshid purposefully has blank white walls, believing that autistic kids get upset by bright colors and patterns. Hopefully she watches Tesini’s videos.

Murshid has published a book to help parents prepare their children for their trip to the dentist and, like Tesini, had made a small trial to show that her method is effective.

Some dentists are naturally good at treating the most difficult kids, but most are not.  It is impossible to predict.

A really good dentist needs neither restraint, like a papoose board, or sedation. If general anesthetic is needed, then something is not being done right. Kids with severe autism can be treated with local anesthetic just like other kids, they just need to go through a familiarization training like Tesini/Murshid use.


Back to immunotherapy

I did have many conversations with Carmello Rizzo who is an Italian doctor interested in both diet and autoimmunity to treat autism. He is a feature at many autism conferences and is a great speaker. He was telling me about Enzyme Potentiated Desensitization (EPD), an overlooked way to treat allergy care.

EPD was invented in the 1960s by a British immunologist Dr Len McEwen, at St. Mary’s Hospital, Paddington. EPD is approved in the United Kingdom for the treatment of hay fever, food allergy and intolerance and environmental allergies.

It is an unlicensed product (i.e. not a drug), it is available only on a “named patient” basis.

EPD is not the same as allergy shots.

Allergy shots, also known as allergy immunotherapy, are injections used to treat allergies over a long period of time. They work by gradually desensitizing your body to the allergens that trigger your allergy symptoms.

Allergy shots typically involve two phases, buildup and maintenance.

It is an escalating dose immunotherapy, when you gradually increase the exposure level of the identified allergen.

The buildup phase lasts for 3 to 6 months. You receive shots 1 to 3 times a week. The doctor will gradually increase the amount of allergen in each shot to help your body build tolerance.

In the maintenance phase you need shots less frequently, usually about once a month. This phase can continue for 3 to 5 years or even longer depending on your progress.

I was never interested in allergy shots because there are so many injections needed.

I found EPD of interest because you take just two shots a year and the effect may potentially control the allergy after 2 or 3 years.

EPD is not expensive and I suppose that is why nobody wanted to invested the tens of millions of dollars to get approval by the FDA. It remains approved for use in the UK, which is ultra conservative when it comes to medicines.

Carmello Rizzo is offering EPD in Italy and elsewhere.


Gene therapy for autism?

I did go to a presentation with an interesting title:

Developing effective therapeutics for Autism Spectrum Disorder

It was not really what I was expecting. It was a young MIT researcher talking about the potential to develop gene therapies to replace mutated genes with a new ones. They are doing this in a model of autism caused by a mutated copy of the SHANK3 gene.

I called him Dr Viral Vector and did have a chat with him. The most interesting thing about his technology is that not only can he target a specific type of cell, but he can target a specific part of the brain, or indeed any part of the body.

At the moment they inject a virus carrying the new gene directly into the brain. That is not going to go down so well with human subjects. The next stage is to try injecting the virus into a vein.

I did talk about the two gene therapies for Rett syndrome now in human trials in my presentation. The ultimate problem is the likely $3 million cost. 

You can use gene therapy as an immunotherapy. 



At the conference I was asked about a gene called DCLRE1C, it encodes the DCLRE1C protein, also known as Artemis.


Artémis (Diane), the huntress. Roman copy of a Greek statue, 2nd century. Galleria dei Candelabri

Source: By Jean-Pol GRANDMONT - Own work, CC BY-SA 3.0,


The Artemis protein is named after the Greek goddess Artemis, who was associated with the hunt, wilderness, wild animals, childbirth, and protection. This connection likely comes from the crucial role Artemis plays in DNA repair, which is essential for maintaining the integrity of the genetic material, like a protector safeguarding the building blocks of life.

Complete loss of function in DCLRE1C typically causes severe combined immunodeficiency. This is called Artemis-deficient severe combined immunodeficiency (ART-SCID).

Fortunately many possible mutations only partially impair the function of the DCLRE1C gene. They can lead to a spectrum of conditions, including atypical SCID, Omenn syndrome, Hyper IgM syndrome, and even just antibody deficiency. These conditions may have milder symptoms compared to classic SCID.

IVIG is a beneficial therapy for immunodeficiency; but is very expensive and not curative.

Humans all have 2 copies of the DCLRE1C and it is theoretically possible to increase expression of the good copy. But that is another story.


A gene therapy already exists for full-on ART-SCID.

Lentiviral Gene Therapy for Artemis-Deficient SCID

Why not use it in less severe cases?

The problem is going to be money, both for a lifetime on IVIG or a “hopefully” one-off gene therapy.

One lady in the audience of my talk had herself taken an expensive gene therapy and was not impressed.


Other interesting presentations

Pierre Drapeau from McGill University spoke about trying to repurpose a cheap old drug, called Pimozide, to treat motor neuron disease /ALS.  This was interesting because the process is similar to repurposing a drug for autism.

Pimozide is an old antipsychotic drug and it seems to work in ALS through its effect on a type of calcium channel called the T-type. Yes, just as in much autism, calcium channels are misbehaving.

The drawback of Pimozide is that it also blocks dopamine receptors in the brain, which is good if you have Tourette’s, but if you have ALS you then get symptoms of Parkinson’s as a side effect.

The solution is to tinker with the molecule and find a version (an analog) that will do the business with the T channels without causing tremors.  It looks like, via trial and error, this is nearly solved.

The whole process has already been going on for many years, it will take many more.

Life expectancy with ALS is only 2-5 years and they struggle to find test subjects in Canada. It looks like they may do trials in China.


An eye opener

A presentation with a very hard to digest title was also an eye opener. You can take a picture of the cornea in your eye and accurately diagnose all kinds of disorders. They started with peripheral neuropathy in diabetics and most recently moved on to people with autism. Using artificial intelligence (AI) they can now make a diagnosis just based on the nerve loss they observe in the cornea. They also can potentially measure the effect of therapies by the regeneration of those nerve fibers.  This is really clever. When Rayaz Malik started down this path, all the neurologists thought he was mad. Many years later and corneal confocal microscopy is widely used around the world, but not yet for autism diagnosis.

Antonio Persico is a well known autism clinician, he appeared virtually. He was mainly talking about antipsychotics. I had expected rather more. 



Immunotherapy addresses one of the four problem areas in autism. There cannot be a one size fits all approach, but you can certainly try camel milk. Addressing food allergy and intolerance is relatively straightforward and you do not need any fancy expensive genetic testing, as Carmello Rizzo pointed out.

There are people for whom genetic testing and/or a spinal tap opens the door to a precise diagnosis and hopefully treatment. That proved to be an unexpected controversial issue in my presentation.

My talk at the conference was all about using personalized medicine to treat autism. The organizer of the event reads this blog and knows that I am rather an outsider, since I am more in treating autism than just researching it.

I had a two and a half hour time slot and I made sure to use it all. 

Advances in Personalized Medicine to Treat Autism

I should mention that I also had some long conversations with Paul Shattock, who pretty much founded the gluten and casein free diet years ago, back at the University of Sunderland. If you are interested in the history of autism, he is a great person to talk to. He is nearly 80 years old, but still has a sharp sense of humour. He has stumbled into more than his fair share of controversies. In Abu Dhabi his opinions and observations were widely shared by other speakers. One younger American speaker thought his views were dangerous; had he taken the time to talk to Paul, he would have found them pretty well thought out. I did ask Paul what has happened to his old friend Andew Wakefield – apparently making another film.




  1. Hi, question regarding the Abu Dhabi presentation: what's the reasoning behind the choice of cetirizine? Why not levocetirizine or rupatadine which has a supposedly mast stabilizing effect?

    1. I have tried many H1 antihistamines, including rupatadine and levocetirizine. Cetirizine works best in our case and it is cheap and accessible. It is known to
      dampen eosinophil activation, more than other antihistamines. Maybe that is why it works best.
      I do use azelastine nasal spray, which is a mast cell stabilizer.

    2. So if levocetirizine was as cheap and accessible, would you still use cetirizine? I'm just curious because in theory levocetirizine is considered more potent, even in regards with the eosinophils.
      Also, since azelastine is an ingredient of a nasal spray, wouldn't it's action be locally limited?
      Great presentation by the way, many thanks for sharing!

    3. An allergy locally can cause problems systemically. In our case the allergy is usually limited to pollen, but it can trigger severe behavioral effects.

      If you can control the allergy to pollen or to food in some other people you resolve the negative behaviors.

      You match the therapy to the degree of the problem. In our case this requires an L type calcium channel blocker in addition to the antihistamines. The final step, in peak allergy season is to add Pioglitazone.

      In theory all this could potentially be replaced by EPD.

      I have used levocetirizine, but it seemed no better.

    4. Thank you Peter,

      In our case we did food allergy test and eliminated the allergens from the diet.
      There was an immediate improvement on my son’s feces.

      We then started our bumetanide trial a few days ago. What I’m trying to control now is some occasional small rushes and itching so there is no interferance on bumetanide’s action. I suspect also some pollen allergy but a very mild one. The rast tests for our area allergens were clear.
      I use xyzal and it seems to be working.

  2. Peter, I thought you may want the new Naviaux paper for your next research review.

  3. Thanks Peter for your summary. I was participating online and three glasses of milk I remember clear. Question why camel milk is so different than other type of milk and how to mimic this uniqueness? If somebody has done an analysis of the chemical composition etc… there were discussions about Zinc, GABA, heavy metals, Omega. Would be interesting to know your opinion.

    1. Camel milk is very high in lactoferrin, which has antibacterial and antiviral properties. Lactoferrin is elevated in human mother’s milk, but not as much as in the camel.

      Camel milk contains lactic acid bacteria, like lactobacillus and bifidobacteria, which improve gut health and modify the immune system.

      Camel milk is low in lactose; in cow’s milk it is often the lactose which causes intolerance.

      Camel milk contains insulin-like proteins (ILPs) which seem to improve insulin sensitivity in humans. This is not fully understood and ILPs might do other beneficial things.

  4. Hi Peter,
    Thanks for all your blogs.
    I'm in the UK and did a dig on EPD. It was offered on NHS way back, but has been discontinued. Dr. Len's own company used to manufacture the EPD shots, which closed down. There are a few local clinics still offering EPD sure where they are sourcing from). Also found out about Low Dose Allergens (LDA), which is still available in the UK and around and seems to have originated from EPD.
    I personally have no experience of either, but my son has multiple food and environmental allergies along with ASD, and this has definitely piqued my interest. I would be keen to hear experiences of any parents who have experience of EPD or LDA.

    1. Peter, how does NHS work? If the FDA approved xolair for food allergies does the NHS now comply?


    2. Xolair is not currently approved in the UK for food allergy. It is only licensed for treating moderate to severe persistent allergic asthma in adults and children aged 6 years and above and for urticaria/hives.

      Drugs in the UK are approved by the Medicines and Healthcare products Regulatory Agency (MHRA). In the European Union they have the European Medicines Agency (EMA).

      After MHRA approval, there's another hurdle for a drug to be used in the NHS. The next step involves appraisal by a cost-effectiveness body. The National Institute for Health and Care Excellence (NICE) conducts this appraisal. NICE examines the drug's clinical and cost-effectiveness for use within the NHS.

      They consider factors like the severity of the condition the drug treats and cost-effectiveness compared to existing treatments

      If NICE issues a positive recommendation, then NHS England typically obligated to fund the treatment within a set timeframe.

      As you know, Xolair is very expensive and so in the UK it is only given when other cheaper therapies do not work.

      In the UK it looks like it is only given at a hospital. I think the drug is actually intended for self-injection at home. I expect this is all about restricting its use and so keeping down the cost.

      Xolair would be a very expensive way to treat food allergy.

      A company called Celltrion is close to getting approval for a competing version of Xolair, so hopefully the price will fall.

    3. Yes, after the first 3 shots of Xolair in office you can self-inject at home.


  5. I have some experience with allergy shots, and maybe it looks different in different countries but the schedule you mention Peter sounds worse than I think it is.

    The buildup phase is 11-15 weeks, with a shot once a week.
    After that you have a shot every 2 weeks, then 4 weeks, then 6 weeks for some while and in the end every second month. Results start to show after about 6 months. You need to stay on the shots for around 3½ years to keep the benefit for a long time - at least 10-15 years.

    The typical first year with shots will add around 20 (induced) light allergy days while reducing all (natural) severe allergy days into light/medium ones.
    The second year adds about 6-10 'shot days' with hopefully even better results during the pollen season.
    Compare this to a normal year when you spend around 30-90 days with medium-severe pollen allergy and do the math.

    The best results are in people with severe allergies, when combinations of other medicines don't help enough. Usually you get symptom free, but not medication free afterwards.

    Unfortunately I can neither tell if
    a) a shot will induce aggressiveness, nor if
    b) the therapy will alleviate aggressiveness in children with a high cytokine load.
    But if you test allergy shots, you will likely know a) after 1-6 weeks and b) within 6 months.
    Note that a local subcutaneous injection is not close to the levels of systemic acting allergens you meet outside on a summer day. Usually there is only a rash and a little redness after the shot and the good thing is that you can use all medications to prevent symptoms. :-)


    1. Also wanted to add that soon there will probably be sublingual tablets ("SLIT") approved for 6 year olds for both grass- and tree pollen. These are taken at home.

  6. A bit off topic - Does anyone know what is the drug or compound involved in this trial: to improve communication and core features of Autism?

  7. Hi Peter
    Please what can one use for extreme OCD and fixation on things for example.Chairs have to be set in a way or else he will fix it.Books have to be scattered everywhere .You can't touch his ipad .WOnt allow me to touch my phone and will want to set things at a particular angle.Its just debilitating.Wont allow us open curtains, as soon as we open hallway curtains he goes back to close It and will want to cry if we try to open.if we are out in the park ,instead of playing he will be weeding grass and plucking flowers all through instead of enjoying the park experience.

    What do you suggest.He is now running too and will attempt to run off anytime we are out and is now very strong.
    We are on Guafacine 3mg,LDC ,Fish oil,Vitamin D and Leucovorin.
    What do you thing I can trial again?We have just succeeded in removing him from school as it was purely babysitting and behaviours were getting worse.
    We intend to start full time Aba again.What do you think can help.He's 38kg.
    I want to introduce bumetanide now that he is home and w can monitor and there wont be complaints about frequent toilet visits
    .Please what dose would you suggest and nay more tips will be appreciated.Apinke

    1. Since you know he is a bumetanide responder, I would go for 1mg once a day.

      I would give 1,200mg of NAC at breakfast, 600mg around lunch and another 600mg in the late afternoon.

      I would ignore all his fixations about curtains and everything else. If he cries, so be it. Once he realizes he is not the boss and he does not make the rules life will improve.

    2. Thank you so much.will start asap

    3. Hi Apinke, your son sounds a lot like my daughter, for us it got a lot worse with folinic acid, which is a shame because she also gets the positive benefits from it too.
      Please keep us informed if you find a solution.

    4. Thank you will do .

  8. Was reading about Clemastine. Who has tried it? Have they noticed any impact? Is there any revised studies as I believe the MS study showed more mixed results? Thanks.

    1. Studies have shown that in multiple models of autism, genes involved in myelination are down-regulated and MRI scans in humans show the myelin layer to be thinner.

      Clemastine has two possible benefits, one on myelination and the other is reducing activation of the microglia, the brain's immune cells.

      Because clemastine is cheap and OTC in many countries it looks like many people have tried it, or use it. Some people, like me, clearly believe there is a positive effect.

      The myelination issue in autism is far less severe than in MS; we just want to give it a nudge. The effect, if any, is going to depend on how old the person is, the dosage, how long they take it for and what type of autism they have.

      There are other pro-myelinating ideas that can be taken from the MS research, like NAG (N-Acetyl-Glucosamine).

    2. Clemastine is not available ANYWHERE now. I've tried multiple countries, and told is "discontinued" every single time. What is happening ?

    3. I recently purchased clemastine from a german online pharmacy (ships anywhere on EU).

    4. Search under the name Tavegil or Tavegyl.

      There are many sellers in Germany and the Baltic states.

  9. Dear Peter. Let me clarify about Antonio Persico. We invited him precisely for these purposes - he was supposed to give a report only on psychopharmacology. Because he explores the crisis in this area of ​​drugs. In addition, many “classical” psychiatrists attend the conference. They will not soon switch to personalized medicine. The goal of reports like Persico's is to reduce the activity of prescriptions and make conventional psychiatrists think about the doses of those medications that they prescribe “out of habit.” This was precisely the purpose of inviting Antonio.

  10. Started drinking raw milk from a local farm and the reduction in inflammation has been noticeable. Its the only probiotic that has had a noticeable effect for me personally. The farmer says its the other constituents in the milk blended with it that make the difference.

    A guy on reddit claimed to mix the milk with carrots as they have a special starch which helps the bacteria stick to the gut apparently and I would say blending the carrots has made it more effective.

    I have aspergers but the main disabling part feels like its the inflammation. I've noticed my face looks different from the reduction in inflammation, too.

    Do you think I'm a rarity? Like the frustrating part is I go from almost normal to quite severe, noticeable aspergers and can barely think straight the fatigue is so debilitating, but a lot of people don't seem to have this issue.


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