Jump to content
ACN Latitudes Forums

Discussion: Antibiotic or Anti-Inflammatory Treatment for PANDAS


Recommended Posts

Great topic--Thank you.

 

My husband and I were just discussing similar issues, over dinner/dishes etc.

 

We lean (today) towards the anti-inflammatory perspective--but as discussed tonight, DH brings up the fact that we are giving the girls Omega 3's, mega doses of vit.C, vit.D in an effort to build/strengthen the immune system...

 

DH asks: WHY if Ps is an auto-immune reaction, if steroids (which worked dramatically for our kids) are in essence suppressing the immune system...Why would we want to build it up?

 

Any thoughts?...

realizing that Omega 3's are anti-inflammatory, but then building the immune system should be right, correct?

AH!

 

I'm with you Tmom, but not sure where Omega 3's are involved in building the immune system. Even if they were, how do we know it's a good idea to mess with the immune system? With H1N1, anthrax letters, bird flu etc., do we want to mess around with things that hurt the immune system?

 

Omega 3's in HIGH DOSE that are extremely pure nearly as strong an anti-inflammatory agent as prednisone. All of this without putting a damper on the immune system. Prednisone is like a thermonuclear bomb. It will definitely kill the bad guys, but it also kills the good guys. And... the effects are bad long-term.

 

I'm not sure mega dose of Vitamins such as C and D are advisable in children. You can actually cause scurvy after taking yourself off of mass doses of C. I'm not sure what the toxicity of Vitamin D is, but I'd be careful about this.

 

My take on this is: don't worry about the immune system. Leave it alone. Don't mess with it unless absolutely necessary. Omega 3's will not affect the immune system one way or another. Please read Omega RX by Dr. Barry Sears and the Anti-Inflammation Zone. Available used from Amazon for less than ten dollars.

Link to post
Share on other sites
  • Replies 46
  • Created
  • Last Reply

Top Posters In This Topic

Hi Dave!! Glad you joined the forums. Remember me from the FaceBook group??

 

Few things...

First & foremost, I'm a complete idiot. I got my Omegas mixed up & have been searching for lone Omega-6 for weeks now... The inflammatory one.

 

Secondly, this is the first time I've seen Alzheimer's treatments mentioned on the forum. My neurologist once put me on Aricept, another Alzheimer's medication. I can't recall my dose or even really what it did (too long ago & on too many medications at once to attribute any positive OR negative results to any specific pill). I know that it's an acetylcholinesterase inhibitor (thanks, Wikipedia), but beyond that I don't really understand what it does. Just thought it odd that two Alzheimer's treatments had been used with P.A.N.D.A.S. patients.

 

What is she taking the Concerta for? I've been prescribed multiple ADHD medications, but the only one that I can remember the name of is Tenex... As with the Aricept it's really hard to say what side effect came from which pharmaceutical during that period for me, but I do remember it not boding well with me. I didn't have food issues back then but I remember my anxiety & depression being pushed over the edge whenever I was on those types of medicines. Maybe you could try a smaller dose or an alternative pill that inhibits her appetite less? just a suggestion.

 

Besides that, I've been vegetarian for six years & gluten-free for almost two months. If you'd like me to talk to you or your daughter about food issues (I have recently developed choking fears, as well) I would be more than willing to.

 

Emerson,

 

Glad to hear you are on this forum too. I have been worried about you actually as you are looking for a new doctor. Omega 6 oils are "poisonous" from an inflammatory standpoint and will really affect your PANDAS in a bad way. Corn oil, canola oil, and all vegetable oils EXCEPT for Olive Oil cause massive inflammation. Cut all of them out of your diet immediately. (Including Doritos, Cheese Nips with Omega 6 trans fats mixed with pure carbohydrates - death food for inflammation) Use only Olive Oil and Butter. I personally buy Omapure IFOS certified Fish Oil at $20 per bottle of 120 capsules. You buy them in lots of 10 to get this price.

 

For your condition, I would take 15 capsules of Omapure per day which is an Eskimo dose. This will dilute the Aracidontic Acid (AA) which is causing the inflammation in your brain. The EPA in pure Omega 3 IFOS fish oil can only dilute AA which will result in decreasing inflammation. If you get on this fish oil and go off of it for two weeks remember that you will return to your previous inflammation state. If you quit, you go back in other words.

 

There are other benefits to the fish oil, but you'll know them soon enough. Please stay away from useless flaxseed oil, Omega 3,6,9 supplements and other brands of Omega 3 which are not 2/1 ratio EPA/DHA and IFOS certified for pharmaceutical grade. The best you can get is OmegaRX by Dr. Barry Sears. Get the liquid oil if you can afford it. Sears' products are the state of the art.

 

I am not sure why Blake is on Concerta. Her pediatrician keeps her on it because she was misdiagnosed with ADHD. She will fail out of school if she is not treated for this. When she is treated she, like Sammy, gets perfect grades. I'm not sure how I feel about this... good grades... malnutrition on the other hand. It's hard to worry about school with PANDAS, but I'm not the custodial parent here. I am winning a slow, but difficult battle with her mother for recognition of PANDAS cutting edge treatment. Blake's mom thinks I'm in this because I'm overreacting. She sluffs off the strangest behavior as normal when it is PANDAS. It's been a real problem.

 

In all honesty, you blow me away with just how much you know about this. I have been taking flaxseed oil, but I'm not sure of the dose. Animal products do NOT bode well with me at all, so would fish oil still be a good idea? I can eat dairy, but I haven't eaten meat in six years. I just don't want to take it & find out that even though it's relieving the inflammation, it's setting off something else. I had NO idea about the vegetable/canola/etc... oil, thank you so much! I don't eat much cooked with oil since my diet is so restricted but I will be sure to stay away from them now.

 

What is OmaPure? I don't believe I've ever heard of that before. What does it do, where can I get it?

 

Pharmaceuticals for misdiagnoses are a slippery slope. Have you seen any positive results on the Concerta, in respect to attention problems or anything else? & I remember you talking about your wife's lack of support. I'm very sorry. Don't give up your fight! Get custody if at all possible so that your daughter can get better! Parents like you are inspiring. Best of wishes to you & Blake. <3

Link to post
Share on other sites

I am interested in this topic of inflammation not only for my pandas daughters but 3 weeks ago I woke up with neck pain and arm pain and I can not lift my left arm any longer. The doctors say it's a pinched nerve and I have inflammation. Now I am thinking it must be autoimmune related since I have Hashimoto's. Maybe it's Lyme, maybe I'm developing some new autoimmune condition. I'm freaking out about it since nothing controls my pain and I can't get the inflammation down. I've been reading up on inflammation for days now. I have started taking omega 3's but I'm sure it's not enough. For my daughters, I can't find a medium that they can stand to take for long periods of time without a huge fight. We've tried almost everything. I have not tried Omegabrite and I have not heard theproduct you mention. I will look into that.

 

My mom takes oil of oregano and I can't stand the smell when she comes to visit. The whole house smells like a huge pizza all the time. SHE smells like a huge pizza! :lol:

 

My girls are 7 and 8. They both responded very well to zithromax and continue on it daily. They respond well to ibuprofen. I'm sure they have inflammation. They also had hidden strep. Not sure if they still do or not. DD8 is on the IVIG path, working our way up to stronger doses. This Friday she will have 1g/kg. Not sure if it's working yet. They tend to be non-responders to the immunity testing (low titers and low normal IgG, IgA, etc.). Not sure how all that fits in. I'm not sure about a lot of things!

 

Susan

Edited by Suzan
Link to post
Share on other sites

re: Omega 3's and adverse effects. This has been mentioned on here before by Chemar. Her son, diagnosed with TS and may have had PITAND, cannot take Omega 3's in a supplement form. However, if it is put into his everyday diet, he tolerates it fine. He cannot take fish oil, but he can eat fish. I believe she said in suppplement form it increases tics.

 

I'm sure you've done this already, but the foods she does eat, have you researched them to see if they cause inflammation. Take for example, corn, something that you can barely get away from in today's diet. That causes inflammation. I find it interesting that most kids LOVE corn. My PANDAS son refuses to touch the stuff. Because of the inflammation that corn can cause, one really needs to watch high fructose corn syrup too and eliminate that from their diet. One Mom that comes on her occasion has a blog for her new way of eating for her family. Her daughter was VERY sick from PANDAS. I suggest popping on facebook and checking it out. http://www.facebook.com/?ref=logo#!/pages/Chickie-Peas-blog-Eating-for-Autoimmune-Health/259835828602?ref=ts

 

re: Vitamin D...I believe those levels should be checked at the doctor. This will also help with dosing. I have read the D3 is also the supplement that one should take. Anyone have info on that?

Edited by Vickie
Link to post
Share on other sites

I tend to lean towards chronic underlying intercellular bacteria that is difficult to eradicate. Auto-immune is present because infection is still there.......

 

If you haven't read 'Cure Unknown' I highly recommend the book to understand just how difficult some bacteria's can be.

 

I'm getting there. I do know that some staph colonies are nearly impossible to kill. Even bleach with water won't kill some of them. It's all magic to me how the immune system works. I'm definitely prepared to believe in intercellular bacteria causing PANDAS.

 

What about this: What if we CANT KILL the bacteria in the body no matter how many antibiotics we throw at it?

 

What then?

 

All you can do is treat the inflammation and hope for the best.

 

I say we all get smarter about the inflammation part of this and focus with more intensity on this front than on trying to kill intercellular bacteria technology doesn't have the ability to kill in 2010.

 

I agree with fighting all the battles we have to fight, but for now inflammation seems like the lowest hanging fruit to pick.

Hi there,

It's an interesting theory but from my experience (and that of many others in this forum), it really doesn't pay off.

Yes, inflammation is probaby the main cause of symptoms, but you have to follow that cause-effect thing back to the root of the problem: a faulty immune response to infection.

If you do not treat the infection aggresively, the immune system will keep putting out antibodies, which will keep causing inflammation, which will keep giving you symptoms. Even if you never manage to "kill it" all the way, antibiotics greatly reduce the reproduction rate, so at the very least you will keep it at bay.

Many PANDAS kids have long standing infections and it takes time to clear them. Since they have an immune problem, they just can't fight infection on their own. I look forward to they day where we can lower his abxs dose, but so far it ain't happening! We tried once (after months on Augmentin XR) to switch and we could see the difference after less than 24hrs. That lowering also opened the door to an ear infection, for which we had to add Rifampin, even though we switched right back to Augmentin XR once we saw him back-sliding. So high-dose antibiotics have been the key to keeping symptoms under control.

Anything you can do to reduce inflammation will greatly reduce symptoms, so I encourage you to keep on all the supplements that are working for your daughter, but please reconsider the antibiotic thing. In the beginning of our PANDAS journey I was at a similar place, trying different natural stuff and thinking no, not my son, he will not be on antibiotics until early adulthood! Yet here we are, after a year, happy to have a doctor (Dr. L) who understands PANDAS, has treated many patients successfully, and is willing to prescribe long term antibiotics.

All the best wishes for long lasting recovery for your daughter! My son is 12 too, and it's a tough age to be sick, but you have the advantage that they CAN understand what is happening and try to fight the OCD. I encourage you to look into Cognitive Behavioral Therapy and ERP if you haven't already done so. It is not the solution to the problem, but it will help her manage the OCD better.

Edited by mati's mom
Link to post
Share on other sites

I've been leaning this way since our last visit to Dr. K in Jan 2010. Here is why.

 

I've had some discuss on this topic with Dr. K during our visits to Chicago auto-immune verses infections. He did say to me at one point too much emphasis is being put on the auto-immune component and not enough on underlying infection... basically, he felt he could not ignore the children he had treated that were getting better on high dose antibiotics post IVIG.

 

Our own experience through trial an error... our son always did better on the higher dose antibiotics and further improved when we started following a 'Lyme Like' protocol with multiple antibiotics.... Within 30 days he shed 50% of his remaining symptoms just when I thought his recovery was stalling. My girlfriend's son had a similar experience but he has now been confirmed to have co-infection to Lyme.

 

Hearing reports back from the meeting at the NIMH in July and hearing how they absolutely know certain strains of strep can be intercellular and how difficult they can be to eradicate.

 

Experiencing the HERXing process over and over again with my son's recovery...... can't say its LYME or a co-infection yet.

 

The cluster of children involved in our situation: 5 children not all biologically related having a similar predisposition or auto-immune problem is almost impossible statistically.

 

I could go on:

 

-Wendy

 

 

 

I tend to lean towards chronic underlying intercellular bacteria that is difficult to eradicate. Auto-immune is present because infection is still there.......

 

 

so SF mom - just curious - is this a new stance for you? when you were doing ivig, were you going on an auto-immune philosophy? are you continuing ivig presently while investigating lyme? please, not at all to provoke -- i'm very interested in your experience and knowledge.

Link to post
Share on other sites

I know this is a complex issue with lots of solid arguments on both sides. Don't begin to know the answer.

 

But I do know this in our son's case: we started with a DAN doc (who also happened to be an LLMD from the ILADS site) who originally diagnosed our son with ARF/SC, later PANDAS. Under his guidance, we tried countless combinations of different dietary restrictions, supplements, and natural abx / anti-virals / anti-fungals, etc. None of them, unfortunately, did the trick for our son. Even the "standard" prophylactic dose of augmentin was a complete failure, and our son had his worst exacerbation while on 500 mg of augmentin daily.

 

When we went to the "Saving Sammy" dose of XR, it was magic. We've been on that dose for about 10 months and have seen the most sustained, dramatic progress since the PANDAS nightmare began 3+ years ago. Personally, I'm inclined to believe it's actual infection that's the culprit, as SF Mom and others have said: our son's ASO rose (even while on the low-dose aug), and now it turns out that every member of our family has elevated ASO despite no "classic" strep pharyngitis symptoms. My PANDAS son and I have both had chronic sinus issues, though. Strep in the sinus cavities? Don't know....

 

But since we've been fortunate enough to find docs who will continue to prescribe the high-dose XR, we're staying that course for now. Certainly there are risks with the long-term abx. But our son's life was complete H-E-L-L before we started the XR, and he's enjoying a normal life again. Don't want to take any chances on messing that up!

 

At some point, we realize we'll have to start ramping down the aug dose. But we plan to wait until the rest of our family has shown at least a clear lowering trend in ASO, and we plan to reduce the XR dose very gradually. And if symptoms resurge, we'll crank the dose back up.

 

As Dr. Cunningham has stated, PANDAS is essentially "rheumatic fever of the brain." It's life threatening (or at the least quality-of-life killing). RF patients are kept on abx for years or even decades to guard against re-infection. If an alternative therapy can be shown to be equally effective with less risk, that's awesome. Until then, though, the abx are our son's lifesaver!!!

 

 

I've been leaning this way since our last visit to Dr. K in Jan 2010. Here is why.

 

I've had some discuss on this topic with Dr. K during our visits to Chicago auto-immune verses infections. He did say to me at one point too much emphasis is being put on the auto-immune component and not enough on underlying infection... basically, he felt he could not ignore the children he had treated that were getting better on high dose antibiotics post IVIG.

 

Our own experience through trial an error... our son always did better on the higher dose antibiotics and further improved when we started following a 'Lyme Like' protocol with multiple antibiotics.... Within 30 days he shed 50% of his remaining symptoms just when I thought his recovery was stalling. My girlfriend's son had a similar experience but he has now been confirmed to have co-infection to Lyme.

 

Hearing reports back from the meeting at the NIMH in July and hearing how they absolutely know certain strains of strep can be intercellular and how difficult they can be to eradicate.

 

Experiencing the HERXing process over and over again with my son's recovery...... can't say its LYME or a co-infection yet.

 

The cluster of children involved in our situation: 5 children not all biologically related having a similar predisposition or auto-immune problem is almost impossible statistically.

 

I could go on:

 

-Wendy

Edited by Worried Dad
Link to post
Share on other sites

The cluster of children involved in our situation: 5 children not all biologically related having a similar predisposition or auto-immune problem is almost impossible statistically.

 

-Wendy

 

 

Wendy -- is one of those children the one you've written about before with ASO of 898 and diagnosed as RF? is that child now confirmed Lyme?

thanks.

Link to post
Share on other sites

I am not sure you can completely rid the body entirely of underlying infection either but I do know you can bring down the bacterial and die off load enough so the bodies own immune system can handle ongoing infections/bacterias. So while your kid is pursuing treatment and recovery you must be doing everything to support their immune system so at some point it can take over.

 

Here is where your theories on dealing with the consequences of treatment and inflammatory issues come into play. This is our son's daily regimen.

 

1. hdProbiotic: 1.5 trillion units per day

2. hd b-12: 50,000 m.g. per day 'chewable' some Dr.'s can provide shots

3. hd Bentonite Clay: 1 1/2 cups per day to rid body of toxins/die off

4. Oil Oregeno Capsules: 2 capsules per day

5. Epicor: 2 capsules per day

6. Natural Anti-viral: 2 tablets per day http://syntrion.eu/usa/products/syimmune-tablets

7. Fish Oil: 10,000 m.g. per day http://www.omegabrite.com/products/liquid.html

8. Mesosilver: 1 teaspoon per day

9. Antibiotic: Azithromycin 250 m.g./Omnicef 600 m.g.

 

Our son is almost 51 pounds.

 

Our goal is to NOT have our son take any of the above in a year or two when his immune system is functioning properly again. There are a few things I'll have difficulties letting go of: antibiotics/mesosilver and will need to gain confidence. We are working with a nutritionist that specializes in auto-immune and guides us with the above regimen. For those of you who have read my post in the past: We recently added the Oregeno, Epicor and Mesosilver to push him towards 100% and also to move towards a more natural homeopathic resolution long term.

 

-Wendy

Edited by SF Mom
Link to post
Share on other sites

Yes and his ASO and Anti-DNase-B resolved to ZERO after first IVIG. Just prior to the 3 hdIVIG and 14 weeks post his last treatment he was tested for Lyme and co-infections via Igenex. Sorry, I should say he is positive for Bartonella and Ehrlichia and the thought that he'll turn positive for Lyme once he is further into his treatment. He was being treated by Dr. K and now Dr. Stricker in SF.

 

I also understand Dr. B is turning up many more children thought to be PANDAS and also have Lyme/co-infections

Edited by SF Mom
Link to post
Share on other sites
Hi there,

It's an interesting theory but from my experience (and that of many others in this forum), it really doesn't pay off.

Yes, inflammation is probaby the main cause of symptoms, but you have to follow that cause-effect thing back to the root of the problem: a faulty immune response to infection.

If you do not treat the infection aggresively, the immune system will keep putting out antibodies, which will keep causing inflammation, which will keep giving you symptoms. Even if you never manage to "kill it" all the way, antibiotics greatly reduce the reproduction rate, so at the very least you will keep it at bay.

Excellent point! The root cause of the inflammation ("faulty immune system" and underlying infection) really needs to be addressed for a "cure" (or should I say remission?) in PANDAS kids. Just treating the inflammation (without addressing the underlying infection/immune problems) is akin to putting a band-aid on a giant knife wound.

Edited by EAMom
Link to post
Share on other sites

Excuse my ignorance here, but can someone please explain what exactly an ASO is? The one part I hate about this forum is always knowing the least, haha.

 

I think that I'm leaning towards the underlying infection, but I'm not too entirely sure. Could it not just be a combination of both? It took years to get it into my Mom's head that P.A.N.D.A.S. was antibodies, not actual strep, attacking my brain. It got me thinking though, & this is just a totally off the wall idea... Are ALL of our antibodies dysfunctional? Do we not have any that actually know what they're supposed to be doing? I say this because up until twelve months ago I had never, not one time, had a negative strep test. Rapid, culture, or otherwise. Every single strep test that I had ever taken had been positive, & eventually my pediatrician started specifically noticing how "insane" my GABHs levels were in all of them.

There was one instance where I woke up with a headache. This is definitely not uncommon for me. This was also when my Narcoleptic symptoms were really making school absolute H*ll, so for whatever reason on that day I decided to play this headache up a little bit so that I didn't have to go. Now, the rule at my house is that if you stay home, you have to go to the doctor. This is especially true in my case. So, true to her word, we tromped off to my pediatrician, who said that I was fine to go to school but that she was giving all of her patients a mandatory swineflu test. Not only did I have strep(GABHs), I had H1N1 without knowing it. The headache that I had was one of my NORMAL morning headaches, & I had no swineflu symptoms the entire time I had it.

 

What I'm asking is.. How does the bacteria get in our brain? & what about those of us who seem to constantly have it in our throats, anyway? In my head I've always imagined having some normal antibodies that try to fight the bacteria & somehow swap it off with the antineuronal ones that in turn carry it to the brain. That's just what I imagine though.

 

The affect that stress has on my symptoms also leads me to lean toward the underlying infection side. Since I never really know when I have strep it's difficult to link the severity of my symptoms to infections. On the other hand, linking them to stress is all too easy. I don't understand the Blood Brain Barrier as much as I would like to, but I've gathered that stress opens it & allows the antibodies to do their dirty work. In this case, would they still attack the brain if there was no infection at all present? Or are they haywire enough to fire off even when there's no infection present? If it's the latter, I find it hard to believe that we could trace their damage so specifically to the Basal Ganglia/Thalamus/Globus Pallidus region. On that note, has anyone done any research as to WHY it's those portions of the brains that got the short end of the stick here? Is there any possibility that they would be more likely to harbor an infection than other portions, possibly?

Link to post
Share on other sites

I also wanted to add the three books that pushed me towards this perspective:

 

1. Cure Unknown

2. Plague Time: How Stealth Infections Cause Cancers, Heart Disease and Other Deadly Ailments, Paul Ewald (I think Dr. K knows him and there is a reference to him on Dr. Ks website)

3. Awakening

Link to post
Share on other sites

Emerson,

since you always have positive culture..does your doc put you on antibiotics (and which one?). Do you get another throat culture 3 weeks after antibiotics?

 

Azithromycin and/or Clindamycin are supposed to be the best antibiotics for clearing carriers.

 

I would also encourage you to get family members throat cultured.

 

What I'm asking is.. How does the bacteria get in our brain? & what about those of us who seem to constantly have it in our throats, anyway? In my head I've always imagined having some normal antibodies that try to fight the bacteria & somehow swap it off with the antineuronal ones that in turn carry it to the brain. That's just what I imagine though.

 

I don't think the bacteria itself gets into the brain (at least not that we know of!). The bacteria triggers your immune system to make antibodies (to fight off the infection) and this is what travels through the blood brain barrier (BBB) to the basal ganglia to cause PANDAS symptoms.

 

btw, I wouldn't worry too much about not having H1N1 symptoms. Everyone in our family got it, but only the kids (6 and 8) got really sick. My symptoms were really mild (fatigue for a day or 2). I think symptoms of H1N1 just vary, with younger kids more likely to have bad symptoms.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...