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Friday, 27 March 2015

Antibiotics and Autism(s) – Pass the Bacteroides Fragilis?



Today’s post allows me to cross off several topics from my to-blog list, since I can link them all together.






N = 1 or N > 1

If you are the parent of one of more children with autism, you will have a very specific view of autism, since your kind is the only kind that affects you.  This is natural and so for most readers it is case of N = 1.

When it comes to everyone else, and what they (should) teach medical students, it is the big picture that matters.  So large clusters of people behaving in a certain way is more significant that any outliers.  If you are the outlier, this is not much consolation.

In the world of autism, rather strangely, it is the very rare types that have an established medical therapy.  This ranges from the types caused by rare metabolic disorders to the more common PANDAS/PANS.

The large cluster that is classic autism remains untreated.


Polypill N = 3

To date I am aware of only a handful of people who have implemented the majority of my suggested Polypill for classic autism.  Three parents found major improvements and one found no impact; but the no impact case was not classic autism, it was very late regressive autism, later diagnosed as mitochondrial disease.

Many parents have implemented 1-2 elements of the Polypill with good results; these usually are elements that are the non-prescription drugs.

Three is not many, but it is more significant than one; and three out of four is a pretty good success rate.

As it stands, the Polypill will be a therapy for some children whose parents happen to be doctors, or own a pharmacy.


What does this have to do with antibiotics?

The other day I wrote a post about a recent 6 month clinical trial of Minocycline, an antibiotic.  The hope was that drug would reduce microglial inflammation and improve autism; but it did not.

Then I received a comment from Seth, a regular reader of this blog, to say that in his son tetracycline antibiotics really do improve autism.

I just read about John, another Dad, who found his child’s autism improved greatly while on antibiotics.  He has started his own charity N of One (N = 1) to raise funds for autism research and published an account of what he noticed.



There are many other accounts of certain antibiotics improving certain people’s autism.

In the case of PANDAS/PANS antibiotics are just the initial part of the therapy, but unless you live in the US you are unlikely to get diagnosed with PANDAS/PANS, let alone treated for it.

I will not be able to solve this puzzle today, but I will make my observations, for what they are worth.

First of all, Seth is talking about tetracycline-class antibiotics, one of which is Minocycline, the subject of that six month autism trial.  Now as we saw in a recent post, that trial was deemed a failure, but that was a trial of 10 children with regressive autism.  

Note that what people mean by "regressive autism" varies widely; most autism has some degree of regression.  In classic autism, the person is born different and then gradually becomes more evidently "autistic" during early childhood. Regressive autism, as defined by Chez, is when things are normal for at least the first 12 months.  Language can be normal or abnormal and then lost.  

I should also highlight that are other reports of Minocycline being beneficial in Schizophrenia and other neurological disorders.



Abstract

Pharmacological interventions to treat psychiatric illness have previously focused on modifying dysfunctional neurotransmitter systems to improve symptoms. However, imperfect understanding of the aetiology of these heterogeneous syndromes has been associated with poor treatment outcomes for many individuals. Growing evidence suggests that oxidative stress, inflammation, changes in glutamatergic pathways and neurotrophins play important roles in many psychiatric illnesses including mood disorders, schizophrenia and addiction. These novel insights into pathophysiology allow new treatment targets to be explored. Minocycline is an antibiotic that can modulate glutamate-induced excitotoxicity, and has antioxidant, anti-inflammatory and neuroprotective effects. Given that these mechanisms overlap with the newly understood pathophysiological pathways, minocycline has potential as an adjunctive treatment in psychiatry. To date there have been promising clinical indications that minocycline may be a useful treatment in psychiatry, albeit from small trials most of which were not placebo controlled. Case reports of individuals with schizophrenia, psychotic symptoms and bipolar depression have shown serendipitous benefits of minocycline treatment on psychiatric symptoms. Minocycline has been trialed in open-label or small randomized controlled trials in psychiatry. Results vary, with findings supporting use in schizophrenia, but showing less benefit for nicotine dependence and obsessive-compulsive disorder. Given the limited data from rigorous clinical trials, further research is required. However, taken together, the current evidence suggests minocycline may be a promising novel therapy in psychiatry.

Minocycline is not just an antibiotic; it has several other known modes of action.

Minocycline is the most lipid-soluble of the tetracycline-class antibiotics, giving it the greatest penetration into the prostate and brain, but also the greatest amount of central nervous system (CNS)-related side effects, such as vertigo.

In various models of neurodegenerative disease, minocycline has demonstrated neurorestorative as well as neuroprotective properties
Minocycline is also known to indirectly inhibit inducible nitric oxide synthase (NOS).

As an anti-inflammatory, minocycline inhibits apoptosis (cell death) via attenuation of TNF-alpha, downregulating pro-inflammatory cytokine output.

Early research has found a tentative benefit from minocycline in schizophrenia


Amoxicillin

The antibiotic that John (from N=1) found to have magical properties was Amoxicillin, a very common type of penicillin.  Amoxicillin is a standard therapy for a strep throat.

Streptococcal infections are the initial trigger for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

Amoxicillin seems to be have just one mode of action, that of an antibiotic.  This means it is a type of antimicrobial used specifically against bacteria, and usually used in medical treatment of bacterial infections. Antibiotics may either kill or inhibit the growth of bacteria.


          From the US National Institute of mental Health  (NIMH):-

Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations?

Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn't enough evidence to recommend the long-term use of antibiotics.

However, a quick “google” will show more n=1 cases, of people claiming their child’s autism/PANDAS improving on Penicillin and then regressing again afterwards.

  
Vancomycin

The other antibiotic that has been researched in autism is Vancomycin.  This drug is not absorbed from the intestine, so for systemic therapy it has to be taken by injection.  

When given orally it is used for things like treating bacterial infections of the intestines that cause colitis.  Orally administered vancomycin is recommended as a treatment for intestinal infection with Clostridium difficile, a common side effect of treatment with broad-spectrum antibiotics.

Vancomycin was first isolated in 1953 at Eli Lilly, from a soil sample collected from the interior jungles of Borneo by a missionary.
.


Abstract
In most cases symptoms of autism begin in early infancy. However, a subset of children appears to develop normally until a clear deterioration is observed. Many parents of children with "regressive"-onset autism have noted antecedent antibiotic exposure followed by chronic diarrhea. We speculated that, in a subgroup of children, disruption of indigenous gut flora might promote colonization by one or more neurotoxin-producing bacteria, contributing, at least in part, to their autistic symptomatology. To help test this hypothesis, 11 children with regressive-onset autism were recruited for an intervention trial using a minimally absorbed oral antibiotic. Entry criteria included antecedent broad-spectrum antimicrobial exposure followed by chronic persistent diarrhea, deterioration of previously acquired skills, and then autistic features. Short-term improvement was noted using multiple pre- and post-therapy evaluations. These included coded, paired videotapes scored by a clinical psychologist blinded to treatment status; these noted improvement in 8 of 10 children studied. Unfortunately, these gains had largely waned at follow-up. Although the protocol used is not suggested as useful therapy, these results indicate that a possible gut flora-brain connection warrants further investigation, as it might lead to greater pathophysiologic insight and meaningful prevention or treatment in a subset of children with autism


What is going on?

The truth is that nobody knows for sure what is going on.  That also applies to PANDAS & PANS, which is why most of the world does not recognize them as genuine diagnosable conditions.

It would seem to me that various different processes are likely involved.  It would not be so hard to do some detective work, on a case by case basis.

For example, both Seth and John were using broad spectrum antibiotics.  If they gave Vancomycin a quick trial, they would find out if the problem was in the intestines, since that is the only place oral Vancomycin can have an effect.

John has written in his paper all about possible changes to the gut microbiome and how repeated antibiotic use early in life could set the stage for the development of autism in some children.  It is very easy to test this hypothesis, just try some Vancomycin.

We know that ulcerative colitis is comorbid with autism.  We know that this will lead to a permeable gut and the flow of unwanted substances to other parts of the body.  We see that Vancomycin is used for treating bacterial infections of the intestines that cause colitis.

So it is no surprise that in some people with autism, Vancomycin will improve behaviors.  You just need to identify which people.

Once apparent that Vancomycin is indeed effective, at least you know where the problem is.  Then it is a question of finding long term solutions to manage the problem.

We already know much about the so-called “leaky-gut” and the many GI problems in autism.  This is very well covered on the SFARI site and blog, so here are some highlights from there.




The new study is the first to show that maternal infection alters the microbiome in the offspring. The finding is significant for autism, as many children with the disorder are plagued by gastrointestinal problems, including diarrhea, vomiting and stomach discomfort. 

Leaky gut is also reported in children with autism and is associated with several other disorders, such as inflammatory bowel disease and Crohn’s disease, and perhaps with Alzheimer’s and Parkinson’s diseases, says Sarkis Mazmanian, professor of biology at the California Institute of Technology.To diagnose leaky gut in the mouse pups, the researchers fed them a carbohydrate molecule attached to a fluorescent molecule. The molecule later turned up in their blood, showing it had escaped through the gut wall. The mice also showed elevated gut levels of an immune molecule called interleukin-6 (IL-6) — a prime suspect in mediating the effects of maternal infection

The researchers then treated the mice with B. fragilis. This strain of bacteria isn’t commercially available, but exists naturally in about 20 percent of the human population. 
Mice treated with B. fragilis at 3 weeks of age don’t have a leaky gut five weeks later, their levels of blood 4EPS and gut IL-6 plummet, and the assortment of bacterial species in the gut reverts to something closer to that of control mice. And the mice do better behaviorally: They stop obsessively burying marbles in their cages, become as vocal as controls and are less anxious.










Sarkis K. Mazmanian, Ph.D.California Institute of Technology
Most research into autism spectrum disorders has focused on genetic, behavioral and neurological aspects of the illness, but people with autism also show striking alterations in immune status.

What’s more, a significant subset of children with autism spectrum disorders show chronic intestinal abnormalities, such as loose stool and altered bacterial microbiota (the collection of beneficial bacteria within the intestine). Antibacterial treatments are reported to provide behavioral improvements in some cases.

In addition, many children with autism have been diagnosed with food allergies and are on special diets. Societal advances (including 'Western' diets and antibacterial products) may have paradoxically compromised human health by reducing our exposure to health-promoting gut bacteria.

The connection between gut bacteria, intestinal disease and autism is a promising area of investigation. Sarkis Mazmanian and his team at the California Institute of Technology used mouse models that show autism-like features to evaluate the efficacy of probiotics.

They found that specific probiotic bacteria ameliorate autism-like behaviors in both environmental models of ‘induced’ disease (by mimicking viral infection of the mother during gestation), as well is in two genetic models of autism spectrum disorder.

These studies are an important step in furthering research that addresses the connection between the gut microbiome and altered behaviors, a link suggested by studies in humans. Finally, Mazmanian’s findings may help validate the use of probiotics as a safe and effective treatment for autism when it is accompanied by gastrointestinal abnormalities.

   
What it means?

It certainly appears that some people with ASD and GI problems have a something similar going on to my case of “N=1” (ASD + pollen allergy).  An allergic reaction has caused mast cells to degranualate releasing histamine and  IL-6.  That histamine causes further release of IL-6 elsewhere.  IL-6 is a pro-inflammatory cytokine and “public enemy number one” in the case of autism flare-ups.

It does appear that some people with autism + GI problems improve somewhat with supplemental digestive enzymes, like Creon/Kreon.  This does appear to be the basis of CM-AT, the long awaited therapy from Curemark.

However, based on feedback from this blog, it appears that blocking the calcium channel Cav1.2 with Verapamil may be even better.  It will certainly be much cheaper.

The standard treatment for this type of allergy related GI problem, is Cromolyn Sodium, a mast cell stabilizer.  Verapamil is also a mast cell stabilizer, among other properties.
Interestingly, some people “do grow out” of some allergies.  I myself, as a child, was prescribed Intal (Cromolyn Sodium) for GI problems of unknown origin.
You will find countless reports on the internet of children with “autism” who, on various diets, “recovered”.  You will hear plenty of people saying that young children will “grow out of” their autism.  It is generally accepted that most people’s autism does moderate as they become adults, just like many people’s asthma.
There is some sense in all of this.  Allergies can seriously aggravate autism.  So if you have someone with very mild autism, but a severe allergy, when you control the allergy you will see dramatic behavioral improvement.
Some readers of this blog have found that common allergy treatments like Zyrtec (cetirizine), have a profound behavioral improvement on their child, who was supposedly allergy-free.
In “my” subgroup of classic autism one underlying problem appears to be a channelopathy (Cav1.2); this might be genetic, or it might be an “epigenopathy”.  In either case, you could detect it, with existing technology, if you really wanted to.

Conclusion
The clever people at the NIMH think that PANDAS/PANS is a kind of Rheumatic Disease, where an autoimmune disorder (triggered by strep throat infections) causes the body to produce antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in a rheumatic disease, the antibodies mistakenly recognize and may attack the heart valves, joints, and certain parts of the brain.  When they attack the joints it is called Rheumatic Arthritis, when they attack the brain it is now called PANDAS.
The NIMH thinks that PANDAS/PANS is distinct from autism.
If you regularly read the research in this blog, you may disagree with the NIMH and see that PANDAS/PANS is just another autism variant.  Likely many things, other than strep infections, can also trigger this over-active immune system.
Many strange things occur in autism, one being that adults apparently cannot have PANDAS.  Of course they can; it just would have to be called ANDAS.
If an adult with autism wants to check for some rare for metabolic disorders leading to “autism” he/she may need to get referred to a children’s hospital, like Arkansas Children’s Hospital.  All the while, some of their diagnoses/treatments continue to be regarded as quackery by many other clinicians.
Some people with Schizophrenia, who improved on Minocycline, should try Vancomycin.  If the benefit is lost (as I suspect, it will be), then we would know that the effect was elsewhere than in the intestines.
Having established that Minocycline had no benefit in children with regressive autism, perhaps Johns Hopkins and NIMH should trial it in early-onset autism (classic autism).  It is Johns Hopkins after all, who believe that regressive autism is primarily mitochondrial disease.  The research indicates that mitochondrial disease is but one feature of classic autism.
Vancomycin is a useful diagnostic tool, rather than a long term therapy, but if Vancomycin improves behaviour, then you have plenty of choices:-
·        Cromolyn Sodium
·        Verapamil
·        Digestive enzymes like Creon/Kreon and, eventually, CM-AT
·        Probiotics & Prebiotics  (one day even Bacteroides Fragilis)
·        Exclusion diets

So if your child improves after taking antibiotics, or anything else, my suggestion is to investigate it yourself, rather than found yet another autism charity.
There is actually plenty of existing research and clever people, like those at the Simons Foundation, are funding further work on a prolific basis.
Other than readers of the SFARI blog and the Questioning Answers blog, is anyone actually reading (nearly) all this research? (let alone applying it)   Evidently not.
The academic researchers just read narrowly around their very focused area of interest.  The majority of clinicians read almost none of the research.

If you want to solve a complex problem, collect all the available data, look for connections and then think about it.
You should not have to do this for yourself, but with autism you do.






18 comments:

  1. Below trial using vancomycin and FMT in ASD will be interesting. It a shot in the dark, much like N=1 given there are no biomarkers. At least the CM-AT drug has one biomarker identifying a common subset who may benefit the most.

    http://autism.asu.edu/Docs/2014/3-FMTstudy-InitialLettertoASDParents_6-12-2014.pdf

    K

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    1. This comment has been removed by the author.

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    2. Thanks for the comment. I did use the test for the CM-AT biomarker and it came up negative, which was not a surprise since there are no GI problems present.

      For other readers, FMT is in effect a "poo transplant". There is plenty of mainstream research to support it. Here is a good paper:-

      Fecal microbiota transplantation: a new standard treatment option for Clostridium difficile infection


      http://www.cdd.com.au/pdf/publications/All%20Publications/2013%20-%20Fecal%20Microbiota%20Transplantation%20a%20new%20standard%20treatment%20option%20for%20Clostridium%20difficile%20infection.pdf

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  2. Hi Peter,

    Sometimes you have moments ( very few ) in your child's development that bring you immense happiness because you hold out so long for something extraordinary to happen right in front of your eyes. The last month would be a case in point, although it might be short-lived.

    Our 'Polypill' over this time has been - Propolis, micro Clonazepam, micro Risperdal, Broccoli sprouts, NAC and methylfolate with the odd Zyrtec.

    As part of our child's homework he is required to learn to spell 20 words of relatively high difficulty. He is also required to construct sentences for each. Historically, this task was fraught with immense frustration and despondence at the lack of ability to construct even the simplest of sentences. Now, of late, he is constructing them with complexity, imagination, understanding and insight that my wife and I sit there clapping with elation at the end of each sentence he strings together rather than traditionally bashing our heads on the table. This was huge and it was not him and where was it coming from? To us it was nothing less than extraordinary. It really was like the shroud had lifted and he'd had some cognitive boost.

    My wife feels the gains from Propolis have been unquestionable. I will reserve judgement until a prolonged trial. Unfortunately they are out of stock.

    He is in a class of very high functioning students but has always stood in their shadow to the point where we and I'm sure others questioned his placement there. We've just had an IEP with the staff and have been told he is now at the top for spelling and reading. We could only say wow!

    But even though to any parent that would be gratifying, the area that's seen the most improvement is his social skills. He really is engaging with us, teachers, peers and anyone else. His anxiety and fear has come right down and most importantly, he just appears so happy in himself.

    Six months ago, none or very little of the above would have applied. I just can't really put it to maturity because the changes have been too dramatic. I guess the only way to find out is to stop everything and see. I guess at this stage we're not game enough to try.

    One remaining area of weakness is his lack of attention and focus when doing work such as maths. He really struggles to focus as I believe he just can't filter out the stimulus around him and he likes the answers to come to him quick. He is certainly not hyperactive and I know there are pharmaceuticals that help with focus such as 'Concerta' but are there any natural alternatives?

    Thanks again Peter.

    Regards,
    D&G

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    1. I am very happy for you. I hope other people reading will follow you.

      I never expected that treating autism would cause such a profound cognitive improvement.

      The "experts" still believe that your IQ, at any point in time, is fixed and therefore any degree of intellectual/cognitive impairment is untreatable. They are clearly wrong.

      All the feedback I receive reinforces this surprise "discovery" that as you go, step by step, treating the biological dysfunctions in autism you will markedly improve cognition.

      It has long been known that ABA will improve your result in an IQ test. This is because you have learnt to sit down, sit still and pay attention. Does ABA make you cleverer? It depends what that means. It makes you able to learn. But this takes a huge amount of time and money.

      The treatments for ADHD tend to be stimulants, you seem to have some AD and no HD. When your son is older you may find something as simple as coffee helps.

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  3. Hi Peter,
    Thanks so much for highlighting antibiotics and autism and the case of my son. I think the strep connection is interesting as well and may apply in my son’s case as he has had elevated strep titers.
    For what it is worth I also have had an undiagnosed disease for the last couple of years with significant overlap with what my son’s condition. Trying to get medical help for it has been only slighlty less frustrating than trying to get the same for my son. Like my son I have reduced pain on tetracycline antibiotics, but at least in my case I have increased pain on some other antibiotics (in particular flagyl). The symptoms I have are pain in my extremities (which I think are vascular), digestive inefficiency, and insomnia. In addition I have elevations in 1,25 dihydroxyvitamin D and low levels of 25, hydroxyvitamin D. This divergence in vitamin D metabolites sometimes occurs in autoimmune diseases (sarcoidosis for example). It is also characteristic of inflammation and some kinds of infections. Interestingly I find that sun is helpful to my health but oral vital D exacerbates my symptoms.

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    1. If flagyl makes things worse then Clostridium difficile will not be a problem.

      Minocycline is the most lipid soluble tetracycline antibiotic, so should be most potent in the brain.

      That may be worth looking into, since it is used long term.

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    2. My son has been seemingly a "healthy" autistic child who is considered moderate in severity. Daltons language has increased with treatment with Namenda to a point that he was able to tell me that he had water in his ear. His first ever ear infection at 9 years old resulted in the standard Amoxicillin treatment. Our family noticed a change in my sons demeanor from the Amox immediately and although it has not cured him by any means, my son says he feels better. Its obvious that he feels more relaxed and happier...the change is tremendous. The only problem is that i cant keep him on amoxcillin forever...but i want to find out anything i can do to help my son further. He has been genetically tested and is his autism is idiopathic. Is anyone doing anything else with this information? My son will not do the "gut" diet but he will now take pills. Likenone of the commenters above, i too have an undiagnosed medical condition that results in pain in my whole body...mainly feet and hands. I too have seen myself feel better with amoxicillin treatment. I take bactrim for perioral dermatitis, but it has no effect. Amoxicillin does. I really want to know more and we woukd consider any study that might be planned.

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  4. Peter, I've just read here that bacteroides fragilis is not commercially available, I don't know anything about probiotics. There are hundreds of them, how can someone choose among them? Should I ask a doctor? I am sure that my son has GI issues although he 'hides' it.

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    1. Petra, you can spend a lot of money on probiotics.


      There is a highly regarded doctor at Boston Children's Hospital. He made a series of videos, this one on probiotics, but there are others on reflux/GERD/GORD.

      https://www.autismspeaks.org/science/science-news/autism-probiotics-%E2%80%98office-hours%E2%80%99-gi-specialist-tim-buie

      If you want to have a similar effect to bacteroides fragilis, you could use the Japanese Miyiari 588 bacteria, which has been used for 70 years in humans. It may not help, Dr Buie suggests no probiotic helps, but it is not expensive.

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  5. Hi, Tetracycline removes aluminum. So, children whose autistic symptoms improve after illness and a round of tetracycline may have been suffering from aluminum toxicity. Many of the symptoms of aluminum toxicity, and the nutrient deficiencies which result, match up with those of autism. For example, aluminum blocks iron absorption. Sulfur removes aluminum, in the presence of too much aluminum, this would put a burden on existing sulfur supply, and result in sulfur deficiency symptoms. For example - sulfur is required for the production of hydrochloric acid, which ultimately keeps Clostridia and other bad gut bacteria under control - during aluminum toxicity there will be less sulfur and therefore less HCI - children with autism typically test low in HCI. Insufficient sulfur also leads to sticky blood, which many kids with autism have. Also with insufficient sulfur, homocysteine cannot convert back. Aluminum stresses the body's supply of magnesium - magnesium is also required for the production of hydrochloric acid. I have a whole facebook group dedicated to matching up symptoms of magnesium deficiency to the symptoms of autism. Aluminum also builds up in the pineal gland, which may be why children with autism can't get to sleep and stay asleep. Also classic symptoms of aluminum toxicity are constipation, anemia, hypothyroidism, neuromuscular disorders (makes me think of apraxia which 60% of kids with autism have), lack of energy and hyperactivity (don't know how this can co-occur but I see both in my kids), learning disorders, and low muscle tone. Besides tetracycline, other ways to help the body get rid of aluminum are : vitamin C, magnesium, high silica water.

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  6. Tetracycline also binds to iron. If you believe the theory that autism is caused by iron overload in at least some cases, then tetracycline may have a positive effect there too.

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  7. HI Peter,
    I have written about my son in his early 20's whose skin has been terrible for some years. You suggested histidine and there was improvement (though not perfect) of his skin within a week. Using quercitin was when I first considered that mast cells might be an issue as he did well on small doses.
    I started 5 ml 3X daily of cromolyn sodium this week.
    Almost immediately he seemed less edgy (he had been diagnosed with a mood disorder a few years ago) and much more even tempered and flexible.
    Today he had a small accident and I was told he had been gassy. Accidents of any nature have been unheard of in many years.
    Within the past year his stomach has become bloated and hard as if he had put on weight but he hasn't gained weight anywhere else.
    You may or may not remember that my son had been a double tap child with the second regression (brain fog and intense muscle tensing) around age 5.
    Might this be a sign that there is a GI mast cell issue going on?
    If so, what else should I be doing? Thanks so much.
    Nancy

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    1. Nancy, if histidine and cromolyn sodium work well, then there must be a mast cell/histamine problem.

      In people with mast cell problems they often respond well to H1 and/or H2 antihistamines. They are all slightly different and since many are OTC you can try them to see what works best. The old H1 antihistamines that make you drowsy are usually the most potent (Benadryl in the US, for example), but cetirizine, which is a newer one, has some extra effects beyond mast cells.

      Mirtazapine (Remiron) is sold as an antidepressant at 30mg, but at much lower doses, say 3 to 8mg, the main effect is as a very potent H1 antihistamine. Some people with autism and/or mast cell issues use this.

      With H2 antihistamines there is also a variation, cimetidine (Tagamet) does some clever things the other ones do not.
      So I would see what H1/H2 antihistamines you have available locally and slowly try them all out and see which, if any, help. You may find a specific combination of H1 and H2 helps, or maybe just one. It seems to vary widely from person to person.

      I think you tried verapamil already, unless I am mistaken.

      Cromolyn sodium is often the most effective therapy, but there are additional add-on therapies that can help.

      You may get a marginal benefit from one of higher bioavailability forms of curcumin, buy they are pricey.

      I assume the muscle tensing is long gone, if not Baclofen should help and might still be worth a try.

      Did you try the Biogaia Protectis probiotic? This does help some people with immune problems and also produces oxytocin which enhances positive emotions. The similar sounding Biogaia Gastrus may give a negative response in people with particular histamine issues. I use Proctis, but found Gastrus was not tolerated at all.

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    2. What kind of dosing do you use with OTC antihistimines?
      I did try verapamil but then realized that the color of the pills was what you warned against so I should try it compounded as the reaction was increased agitation both times I trialed it.
      I did try one bottle of Biogaia Protectis and saw nothing good nor bad. Should I continue without some kind of noted response?
      Thanks Peter.

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    3. Nancy, just use the regular dosage indicated on the antihistamine packaging.

      If Protectis did nothing for your son, you either assume he does not respond or give a higher dose. My son responds to the standard dose, but some people give a dose 5x higher, this gets expensive.

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    4. Thanks, Peter. We are currently doing long distance consult with Dan Rossignol, considered an autism doctor. But what kind of specialist should we be seeing for this? An allergist or some kind of immunologist..? I love in the US and would love any recommendations.
      Nancy

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    5. Nancy, I think you need to see someone who deals with mast cell activation Syndrome (MCAS) and mastocytosis. There are many such people in the US. Best to see a specialist. Such a person will be able to say whether your son has a mast cell issue and suggest how to treat it. Big university hospitals have such people.

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