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curcumin and BBB


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I've been thinking about the Blood brain barrier lately. Since apparently our kid's BBBs are compromised for some reason. I'm wondering if it isn't a disorder of the immune system, but rather of the BBB - since the immune system will normally make anti-neuornal antibodies during strep in normal people (as evidenced by the fact that Cm K went up to 135 median in these people) , and the fact that even in the the mice study that showed that you can "get" OCD by exposure to the antibodies - they had to use drugs to open up the mice's BBBs.

 

If the immune system learns that when it finds an antigen it should produce more of the anitbody for it - stands to reason that in Normal people it produces the antineuronal antibodies, but stops at some point because the antibodies can't cross the BBB. Our kids can - so these antibodies find the anitgen they are looking for and tell the body to make more, and more.

 

Anyhow, I'm looking for supplements that are antiinflamatory to replace advil for us. I'm also looking thinking about switching antibiotics to one that crosses the BBB, incase DS has lyme or mycoplasma(myco P can cross the BBB) and read that curcumin is not only antiinflamatory, it cross the BBB and has some other properties as well.

 

Below is a page I found. Its a very, very, small world - I was just googling away and this site is written by a couple I know. They used to live in my area, and they worked at the same company as my husband and I met at. If you go from this page to the home page she has a "products we like" list that links to numerous products that are very informative. They are a really amazing couple, and even got the FDA to approve a radical treatment for their twins to help them with the rare disease they have. The website is heart wrenching, but inspiring (and the product list is great).

 

http://addiandcassi.com/the-real-curcumin-for-treating-alzheimer’s-parkinson’s-and-other-brain-disease/

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Fascinating web site and info on both NAC and curcumin is very interesting, too.

 

We've been using curcumin for over a year. Can't claim to purchase the super-duper "optimized" type recommended by your friends (frankly, didn't even know until now that it was available, and there's still a skeptic in me that wonders just how much better one form of it might be than another). But we do generally buy the organic curcumin supplements at the Vitamin Shoppe and give twice each day. It's very hard to separate out the impact of any one supplement given the array we've had DS on for the last couple of years. Do know it hasn't harmed him at all, though.

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This is probably a very ignorant question, but hey-we're all friends, right?

 

Thinking about those mice and needing meds to open the BBB....do psych meds have a component that opens the BBB so they work and if they do, wouldn't that mean all psych meds should eventually make our kids worse?

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Hi - I've been down this route couple of times.. also read that ANA in most folk.. so.. on that vein.. the histamine/meth thingy could absolutely play role in BBB and letting those not so rare ANAs in.

 

 

 

And from some reading re using antihistamines to help BBB - I think... that the studies seem to point at H2 being good antihistamines to take cos H1 histamine actually increases effectiveness of BBB whereas H2 causes an increase in permeability. Our ped fleetingly ok'd trying tagamet or zantac next time one of our kids ramps up. need to fir that up at next appointment. You can buy them oTC but not in liquid or child size dosing.. need rx.

 

When we try it, I'll let you know if we see any improvement....

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The BBB part in this puzzle is starting to make more sense to me. I have PANDAS, my two children have PANDAS. My sister has PANDAS symptoms...so, its all in the family. And it seems like we have a genetic, familial issue with the BBB, who knows why, but we do. And if it is normal for folks to have anti-neuronal antibodies, we have them after getting strep like everyone, but they just cross into the brain and cause issues with the basal ganglia and the rest is PANDAS history.

 

We are going to see a new immuno doc on 11/11 and I am going to, well... pick his brain on this.

 

Sounds like there needs to be research on how to close the BBB in PANDAS kids. I found one recent article on "Breaching the BBB", and it mentions some about closing it..." Similar work has been initiated for treating multiple sclerosis, where researchers hope to tighten the barrier rather than open it, to prevent destructive immune cells from entering and causing disease." But, most of the article addresses opening the BBB in order to treat alzheimer's and such.

 

http://www.sciencedaily.com/releases/2011/09/110913172631.htm

 

Does anyone know if Cunningham or Swedo has done any research on the BBB and how to close or control it in hopes to help our PANDAS kids?

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The BBB part in this puzzle is starting to make more sense to me. I have PANDAS, my two children have PANDAS. My sister has PANDAS symptoms...so, its all in the family. And it seems like we have a genetic, familial issue with the BBB, who knows why, but we do. And if it is normal for folks to have anti-neuronal antibodies, we have them after getting strep like everyone, but they just cross into the brain and cause issues with the basal ganglia and the rest is PANDAS history.

 

We are going to see a new immuno doc on 11/11 and I am going to, well... pick his brain on this.

 

Sounds like there needs to be research on how to close the BBB in PANDAS kids. I found one recent article on "Breaching the BBB", and it mentions some about closing it..." Similar work has been initiated for treating multiple sclerosis, where researchers hope to tighten the barrier rather than open it, to prevent destructive immune cells from entering and causing disease." But, most of the article addresses opening the BBB in order to treat alzheimer's and such.

 

http://www.scienceda...10913172631.htm

 

Does anyone know if Cunningham or Swedo has done any research on the BBB and how to close or control it in hopes to help our PANDAS kids?

 

That seems to be a key question in my mind. We are thinking/hoping that with some kids, when inflammation is gone, the BBB is tight enough for protection from the anti-neuronal antibodies, but for some that may not be the case....like you say; faulty BBB possibly? I've wondered if those that "outgrow" pandas are experiencing a "tightening" of the BBB when they stop physically growing (at least that is what my fingers are crossed for.) Otherwise, we are managing from episode to episode, trying to minimize exposure whenever possible and remembering to bask in the remissions in between.

 

So steroids both shut down the response, the production line of antibodies and help the BBB at the same time? But are they promoting a "healing of the BBB aside from the reduction of inflammation? Cortisones also induce a degree of white blood cell death and is also believed that they reduce the "leakiness" of the blood-brain barrier.

My girls are doing better than ever with the IVIG and IV steroid/oral taper combination. Fingers crossed, prayers made!

 

Edited by JAG10
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We are crossing our fingers on that too, the "outgrow" part. This was my experience. My PANDAS issues started at 7 years old, and were mostly resolved by the time I was 15. And since college age, symptoms are 90 to 95% resolved. I was on proph abx until 21, that is the only treatment I had.

 

DS13 responded well to a 5 week steroid taper 2 years ago. We have not done this since, but plan to do this again shortly. We already have the Rx filled. This will hopefully give him relief from his tics and symptoms around Thanksgiving break and hopefully into Christmas.

 

We have done 9 months of Lyme/co-infection treatment with various abx, so hopefully all infections are cleared. But, it is very hard to tell. We most likely now will go off abx except for the daily proph of augmentin or penicillin.

 

We are not sure what else to try at this time, other than to have this new immuno doctor check over everything and encourage a strong immune system with whatever recommendations he gives. Not sure if we would do IVIG again...probably not, b/c he had a very hard time with it, and no improvement in symptoms.

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We have not had much success with curcumin. We did not buy the version you mention here, but we are using top quality--Protocol for Life. I wouldn't say it isn't doing anything, but not anything that significant, as best I can tell. I think the level of inflammation in PITANDS is beyond what something like curcumin can handle. It would probably do well to replace advil, but I'm not sure it can do much more. At least that has been our experience.

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no one argues that the anti neuronals are in all people - they are just in very, very high amounts in our kids.

 

YES - a stressful event can open the BBB. Epinepherine (sp?) can be used on mice to open it, and the mouse study scientists mentioned that, but I beleive they used another product on the mice. Epinepherine is naturally occurring in our bodies as reaction to extremely stressful event. I would assume once the it occurs- it leads to more "stress" - since our kids enter into a "flight or fight" state in delaing with all the weird things their brains are doing, so it is a cycle that leads to more opening, and further creation of the antibodies.

 

There was a researcher that studies the BBB attending the symposium in Texas. He was sitting one table over from me at the dinner. Anyone reading this remember is his name? I know there was at least on pandas parent - a dad sitting at that table. I think this is an whole 'nother area of study.

 

The odd thing is - our kids don't show markers of inflamation. So I wonder if there is something other than inflamation that can increase permeability? Stress hormones...I dunno. But I'd like to ask that guy what can open it and what is know (if anything) to help close it.

 

IVIG - I've read its also highly anti-inflamatory.

 

I know steroid work for many kids, but we've always decided the risk of new infection outweighted the benefits, and was feaful that if there was an existing infection of anykind (like Lyme, or mycoplasma) that would be the very opposite of what you want to do, and that the steroids usually only give you a breif respite anyway.

 

My son it in a different place from extreme exacerbation - he's doing fairly well, and is fairly stable, but not 100%. I very much doubt that supplements would help him in the state he was two years ago. He needed 2 IVIG's to get to where he is. Now I'm jsut working on whatever I can do to speed the healing, closing BBB, getting CBT (and perhaps pych meds if the supplements don't do enough to get him to a place where he can do CBT without the extreme stress he has when faced with doing CBT - if stress can open the BBB I don't want that.

 

When we redid his cunningham test several weeks after his first IVIG he was still "boarderline" pandas - 133 cam K. Antineuronals were down, but D2 was boarderline (very top number for "normal". This was down from 176 prior to IVIG - even when not in exacerbation - but his baseline at that time had many symptoms still.

 

As for stuff that crosses - some stuff crosses, some doesn't. Antibodies and bacteria are suppossed to be too large to cross. Virus's can cross. Mycoplasma can cross. Some drugs cross.

 

Its a cunnundrum because - if your child has lyme (in the brain) or anything that is an active chronic virus - you want to further open the barrier and send in something to kill if off....I'm not sure (have to read more ) but I think that some things JUST cross - like minicycline - they don't damage or open it, and I have to read more about crucumin too - I think it has something that crosses, without increasing permeabilty - as a matter of fact helps stop the permeability (I think? - or it is the opposite as one post above says?)

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I was reading about the BBB on Wiki and it states this about Lipoic acid..."There are currently active investigations into treatments for a compromised blood–brain barrier. It is believed that oxidative stress plays an important role into the breakdown of the barrier. Anti-oxidants such as lipoic acid may be able to stabilize a weakening blood–brain barrier."

 

http://en.wikipedia.org/wiki/Blood-brain_barrier

 

There are a lot of hits on the forums here for Lipoic acid. Mainly on the Lyme and Tourettes forums. We have not tried it. Has anyone had anyone tried this as a supplement with good results?

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This is probably a very ignorant question, but hey-we're all friends, right?

 

Thinking about those mice and needing meds to open the BBB....do psych meds have a component that opens the BBB so they work and if they do, wouldn't that mean all psych meds should eventually make our kids worse?

 

Not a bad question. I found that every psych med I tried on DDnow18 made him worse or did absolutely nothing...(we tried before we knew what we were dealing with.) I know that the SSRI's are the only ones that Dr. Murphy reported on, BUT, Concerta, Adderal and such made DS extremely violent (swung a metal pole at my head in a split second), Lamictal only gave him THE rash (that was scary), Risperadol took away his appetite and gave him a stomachache (but did nothing else) and Lithium made him nauseous every morning, but nothing else (school nurses thought he was faking, until I figured out the correlation). Soooo, my personal opinion is that these kids have infectious autoimmune issues, so how would psychotropic meds help, anyway? And, in answer to your question...I can't see how it wouldn't cross the BBB.

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