Has anyone used natural antibiotics for PANDAS?

[SearchingMom]

Hello all,

 

While we're still waiting to get a diagnosis (or not) for PANDAS, I've been researching natural antibiotics. We've been taking probiotics for about 6 weeks now, and I was hoping to learn more before considering the large-dose antibiotic route. But if that's what we have to do to see results, of course we'll take that route!

 

In the meantime, can anyone tell me if you've ever tried grapefruit seed extract, oregano oil, olive leaf extract, or caprylic acid? I read on Wikipedia (may or may not be true) that caprylic acid is effective against some strains of Strep and Staph, although there have been steady reports of mild to severe gastrointestinal side effects. I can't find any reported side effects with grapefruit seed extract, and it is supposed to be a natural broad-spectrum antibiotic effective against yeast, bacteria, viruses, and parasites. Both seem almost too good to be true! I don't know much yet about the other two. Any thoughts, advice, and experience are welcome.

 

Also, here is an update on our progress.

 

Today I took my ds11 to a pediatric neurologist who diagnosed OCD and referred us to a child psychiatrist. (Shocker.) In advance I tried to determine if/how they treat and diagnose PANDAS, but they never responded to my repeated visits and e-mails. Basically, we were dismissed with: "I'm not goint to argue with you about PANDAS" even though the dr was doing all of the talking - mostly explaining why it *wasn't* PANDAS. But for whatever reason, he did agree to run bloodwork for ASO and AntiDNaseB titers and a 3-day strep culture. We also have an appointment in two weeks with a dr who is supposed to know about PANDAS, so that's reason to hope, although I try not to get too excited about a good outcome. Just trying to be ready if more obstacles appear along the way....

 

Thanks,

SearchingMom

[kimballot]

Hi Searching Mom - Glad to see your search found us! There are many discussions on this site about a variety of natural remedies, and I hoping some will join in to discuss their experiences! If you put the specific remedy in the "search" box, you should be able to read previous discussions. For example, I just put "oregano" in the search box and got a listing of several discussions that involved oil of oregano. Here is a discussion I found on natural remedies that you might find helpful http://www.latitudes.org/forums/index.php?showtopic=7629&st=0&p=62100&hl=oregano&fromsearch=1entry62100

 

 

Regarding the doctor and your child's PANDAS diagnosis... It is good that the doc agreed to order strep cultures, dnase and aso titers. However, you need to recognize that a negative result on these does NOT rule out PANDAS, and a positive result does NOT mean your child has PANDAS, as your child could (theoretically) have OCD and happen to have caught strep throat. The PANDAS part is when you see a sudden onset of symptoms that are closely linked in time to an infection, and when you see the symptoms decrease when the infection is treated or gone. Some of our kids do NOT get a rise in titers becuase they have an immune system problem that does not allow titers to rise. Some of our kids do NOT have strep throat as a trigger as strep can reside in other parts of the body besides the throat. Many of the more involved children go on to have PITAND (pediatric infection -triggered autoimmune neuropsych disorder) in which ANY infection can cause an increase in symptoms (not just strep).

 

So... my advice is to keep reading and posting here. Let us know how your child is doing and what the docs say and you will get feedback from the good folks on this forum to help you understand if the problem is PANDAS related.

 

Wishing you well -

[parents4eyes]

I

Edited October 2, 2010 by parents4eyes

[mkur]

This was posted on a different thread:

http://www.latitudes...indpost&p=82590

Edited September 6, 2010 by Chemar
correcting the link for you :)

[mom love]

parents4eyes, did the pharmaceutical antibiotic work for your child? Which one was it? Are you looking to move to a natural antibiotic as a prophylactic?

[parents4eyes]

[

Edited October 2, 2010 by parents4eyes

[Stephanie2]

we have used oil of oregano and olive leaf extract with some success. i have also given grapefruit seed extract. i think i've seen the best results with oil of oregano. i hear silver is good, too, for strep - haven't used it.

 

many in the autism community control pandas with olive leaf extract 3 times a day, away from probiotics. i am not brave enough to rely soley on these. i use azith once a week for both of my kids.

[emst]

Hello all,

 

While we're still waiting to get a diagnosis (or not) for PANDAS, I've been researching natural antibiotics. We've been taking probiotics for about 6 weeks now, and I was hoping to learn more before considering the large-dose antibiotic route. But if that's what we have to do to see results, of course we'll take that route!

 

In the meantime, can anyone tell me if you've ever tried grapefruit seed extract, oregano oil, olive leaf extract, or caprylic acid? I read on Wikipedia (may or may not be true) that caprylic acid is effective against some strains of Strep and Staph, although there have been steady reports of mild to severe gastrointestinal side effects. I can't find any reported side effects with grapefruit seed extract, and it is supposed to be a natural broad-spectrum antibiotic effective against yeast, bacteria, viruses, and parasites. Both seem almost too good to be true! I don't know much yet about the other two. Any thoughts, advice, and experience are welcome.

 

Also, here is an update on our progress.

 

Today I took my ds11 to a pediatric neurologist who diagnosed OCD and referred us to a child psychiatrist. (Shocker.) In advance I tried to determine if/how they treat and diagnose PANDAS, but they never responded to my repeated visits and e-mails. Basically, we were dismissed with: "I'm not goint to argue with you about PANDAS" even though the dr was doing all of the talking - mostly explaining why it *wasn't* PANDAS. But for whatever reason, he did agree to run bloodwork for ASO and AntiDNaseB titers and a 3-day strep culture. We also have an appointment in two weeks with a dr who is supposed to know about PANDAS, so that's reason to hope, although I try not to get too excited about a good outcome. Just trying to be ready if more obstacles appear along the way....

 

Thanks,

SearchingMom

 

When DD was younger in 1st and 2nd grade we did have some success Oregamax and Oregonol and Olive Leaf Extract. Uvi Ursi also works too, though limited. We have used caprylic for yeast but when we're on Zithromax we need to use Nystatin. It is important to rotate herbals, not give the same one all the time. I'm not the biggest expert. There is a notion that the body gets used to them. When she was younger we could knock out or greatly reduce her first or second exposures in the school year, usually November or December with the herbals. The Winter exposures were still pretty bad. That was before we could get a doc to believe in her symptoms = PANDAS and agree to treat. She's in 5th Grade now. We now treat with Zithromax and keep those herbs on board to deal with other things besides the bacteria, like yeast.