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I actually sent an email to Dr. Swedo about this a few days ago (haven't heard back yet). A year and a half ago my PANS daughter had no allergies except for dustmites - just like me. We retested her because she seemed to keep having allergic reactions to various things. Now she is testing positive for almost everything! I'm trying to understand did she develop all of these allergies in the past year or is this another PANS/PANDAS byproduct? I went to the conference in RI last fall, and Dr. Swedo mentioned that antihistamines help our children. Why? When I hear back I will post.

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Please let us know when you find out.


DS at age 5 tested negative for absolutely everything. Now at age 12, he is testing very highly allergic to dust mites and negative for everything else. But I still feel like he is an allergy kid. I fully expect him to test positive for more things as he grows.


But most (all the ones we've tried) antihistamines seem to cause an increase in hyperactivity and impulsivity!


We've never tested his histamine level but certainly see some characteristics of high histamine.

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ibcdbwc, what allergy medicines have you tried? Different brands of allergy meds will do different things. For myself personally, most allergy meds will cause heart palpitations for me and cause me to feel like my skin is crawling. Check the label. Bennedryl is one of the allegy meds that don't have that affect on me.


Also, I'm too tired to double check, just got home from work... but I think in the article that I posted, said that the histamine levels don't always translate to allergy problems. If not in that article, I read it in another related one talking about histamine and behavior...

Edited by qannie47
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There are a handful of other threads here on the forum regarding histamine levels and those among our kids who appear to be helped by antihistamines and those who are not; it's all tied into the methylation cycle, again, at least according to Dr. Pfeiffer et. al. Here's a link to a quick chart on the topic:



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My daughter and I fit the "high histamine" symptoms perfectly, but neither one of us benefit from antihistamines, and we've tried them all. I even ordered the DAOSin, which is supposed to be really good, but it didn't do anything for me.


Personally, I think the problem is the leaky gut causing food and other allergies, and then our bodies react to everything. Our daughter had the food allergen testing done, and it seemed strange to me that almost all of the foods she's mildly intolerant to are almost all of the foods she eats! (No, not just dairy or gluten... it was the foods she often eats like bananas, lettuce, mushrooms and coffee!) Then I read an article saying those tests have unacceptable high rates of false positives.


Personally, I think our kids have leaky guts (thus autoimmunity) and anything that leaks out (including food) is looked upon as the enemy. That would explain why my dd is somewhat intolerant to most everything she eats. I think we need to treat the gut issues (kill whatever infections there are and heal the leaky gut), before we'll see much progress. This is what the Functional Medicine doctors are all pointing towards.




It would be nice to find a "bandaid" antihistamine while trying to heal the gut, but the antihistamines haven't worked for us. Personally, I've found some relief with Quercitin and Nettle at times.

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DD has never had allergy issues and both she and I seem to have 1/2 high histamine and 1/2 low histamine symptoms. So not sure which catagory she would fall into. She does develop very dark circles under her eyes with treatment herxes and yeast infections.


Reposting this from quannie47's post on "Interesting Article":


I found this thread on Phoenix Rising which lists several links pertaining to species of probiotic bacteria which either degrade or produce histamine:




From BulletProofExec with lots of self promotion at the end of the article (which is why I sometimes have trouble taking this guy completely seriously):

  1. Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods).
  2. Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents)
  3. Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum, and some soil-based organisms.

From TheLowHistamineChef:




The probiotic Lactobacillus rhamnosus (and a few others) down-regulate the IgE and Histamine 4 receptor while also up-regulating anti-inflammatory agents like (IL)-8. In English (to quote a group friend): the probiotic turns down the dial on two important allergy/mast cell cell/histamine receptors, while enhancing the activity of anti-inflammatory agents.


From Chris Kresser:


this study apparently looked at various microbial strains and broke them into three categories: one category that’s histamine producing; another category, which seems to be sort of neither histamine producing, nor histamine degrading; and then the third category would be histamine degrading. And so obviously you have histamine intolerance, you’d want to focus on the ones that are histamine degrading, and you’d want to avoid the ones that are histamine producing. And the histamine-producing category is Lactobacillus casei, Lactobacillus reuteri, Lactobacillus plantarum, and Lactococcus lactis, Enterococcus faecalis, and various types of E. coli. And then the ones that seem to degrade histamine and be beneficial are lots of bifidobacteria species, but particularly Bifidobacterium infantis and then Lactobacillus rhamnosus and salivarius and sporogenes and Lactobacillus gasseri.

This is the tip of the iceberg because there are a lot more species, obviously, of probiotics out there, and I personally wonder about soil-based organisms. I just anecdotally in my practice have observed that soil-based organisms are much better tolerated by people with histamine intolerance and people with SIBO, so my suspicion is that those are not histamine builders and may even be histamine degraders, but I don’t have any evidence to back that up.


I tried to find the original paper for this but had no luck.


Just my thoughts:


If our children's gut bacteria have been compromised with abx use or a diet containing pesticides (which also effects survival of beneficial microflora) the proper histamine regulating bacteria may be under or over-represented which could produce symptoms of histamine disregulation. This is perhaps why some children do better on acidophilus while some can't tolerate it, and why others do well with some bifido species but not acidophilus.



Edited by rowingmom
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I don't know if my son is high histamine or not. I guess he should be. He was positive on the skin prick testing for dust/mites, tree pollen, outdoor mold, feathers, cats. He takes a Claritin each morning and it mostly keeps his allergies in check. When they flair up, I use Flonase and Patanol eye drops. He showed sensitivity to brewers and bakers yeast on the Alletess IgG food testing.

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I have not heard back from Dr. Swedo after 2 weeks. I will call the NIMH to find out how long a reply should take. In the meantime, I have been Googling away! I found something very interesting. Certain meds interfere with DAO activity which suppresses histamines. Ibuprofen is one and Clavulanic Acid (in Augmentin) is another. I'm wondering if this is what my DD's issue is. Here is the list:




An interesting website:



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In a recent test my ds showed a high level of histamine. My son also has a rash that comes and goes on his face. From time to time he will break out in a rash on his arms. I spoke to his doctor about this recently. He is going to run a test to check for Mass Cell Activation Disease. My son does not have any food allergies but does have seasonal outdoor allergies. He was recently tested and it showed he had allergies to 3 different types of grasses. My son takes Zertic on the morning and singular in the evening.

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  • 3 months later...

UPDATE to my earlier post - I went to the Q & A in Mass. and asked the panel about histamines and our PANS/PANDAS children. I explained how my daughter had allergy testing prior to onset and was allergic only to dust mites. After 2 years of PANS she is now testing allergic to everything and had very bad flairs last pollen season. I asked if this was related to PANS/PANDAS. Dr. Swedo nodded her head as I asked. She explained that her immune system was in an inflammatory state because of the PANS. Her recommendation was to work at modulating the immune system. The entire panel was in agreement that immunotherapy was not the right thing. It is not that they are actually allergic, so much as their immune systems are in such a state of inflammation, that they react to the allergens. (I do not remember the exact wording, but this is the gist). They recommended antihistamines (I use Zyrtec for my DD). I have read that vitamin C is a natural antihistamine, so I have been giving that as well. Nordic Naturals Ultimate Omega Jr. is a great source of Omega 3's which is an anti-inflammatory. Also, getting your child's vitamin D level to 50 - 80 ng/ml will help. It is late May now, and so far my DD has not flaired this pollen season. Her worst time last year was the grass pollen which is about to hit. I'm hoping and praying that she will continue to do well!

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