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Discussion: Antibiotic or Anti-Inflammatory Treatment for PANDAS


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Hello,

 

My name is Dave Hiergesell and I have recently joined this group in order to learn what I can about PANDAS treatment to help my daughter Blake. I have received a lot of great advice about this and I am implementing many of the ideas I have gotten. Thank you very much.

 

I'd like to bring a topic up for discussion as a kind of "null hypothesis" which could actually be tested at some point in the future, but for now it may be worthy of discussion. In this particular case, the null hypothesis is that there is no relationship between improvement of PANDAS symptoms and the anti-inflammatory effects of the antibiotic being administered.

 

As an "experimental hypothesis" I'd like to propose the following:

 

It is my suspicion (nearing a belief) that the primary clinical improvement in symptoms of PANDAS children who are taking antibiotics (prophylactic or otherwise) is due to the anti-inflammatory characteristics of certain antibiotics. The improvement is due to the reduction in inflammation REGARDLESS if there is any infectious agent there or not.

 

I realize that I've waded deep into the swamp of the controversy over antibiotic treatment of PANDAS and am on an island now. I believe that only through intense discussion and resultant research will we ever be able to get real answers on this disorder and agree on the safest treatment protocol possible.

 

I'm going to play devil's advocate here on antibiotics.

 

Personally, if I were Sammy's mom (or any other parent with a bad PANDAS case on their hands) I'd fire doctors until I found one willing to treat with prophylactic antibiotics. You give Sammy 2000 mg per day of Augmentin XR and his symptoms subside, then I don't care about the bad things other doctors say will happen by keeping him on this regime. He is a physical danger to himself at this point. Side effects of not giving him this treatment outweigh what the doctors are worried about. Its a moral choice at this point and the doctors don't have to live with Sammy.

 

Here's a different twist on this: Let's suppose for a moment that Sammy's PANDAS restricted diet of not eating for days on end, or eating only foods such as watermelon etc. are causing INTENSE inflammation in his body way above and beyond PANDAS. Let's say his body starts basically consuming itself due to malnutrition which is MAJOR inflammation.

 

My daughter Blake who has PANDAS is malnourished due to the fact that spices and other flavors most people take for granted in their diets are way too strong for her in a sensory capacity. She only drinks water because she reports that other drinks are too strong for her. She's practically a vegetarian now. Prior to PANDAS she ate and drank everything we gave her.

 

So, the malnourished PANDAS child is now going off the scale in terms of inflammation due to self-imposed DIETARY anomalies as a result of PANDAS. This would be like "turbo charging" PANDAS with inflammation off the scale. The more restricted the diet, the worse PANDAS becomes.

 

Now, enter the doctor. Let's say the doctor gives the malnourished "turbo charged" PANDAS child a blast of steroids. Symptoms resolve almost immediately. Inflammation zapped, symptoms resolve. Now the clock is ticking though. The steroids start doing their work on the immune system and the symptoms start to accumulate. Zap, the child is taken off steroids. PANDAS returns.

 

Enter antibiotics.

 

Augmentin XR has been shown in studies to have a positive effect on Alzheimer's sufferers. Are we to assume that the Augmentin is killing some sort of infection which is leading to the improvement in these patients? No, it's actually the anti-inflammatory characteristics of Augmentin that are helping these patients.

 

Well, what if the same mechanism where Augmentin XR helps Alzheimer's patients is the primary mechanism that also helps PANDAS sufferers? What if the infection gets zapped quickly and the inflammation causing antibodies are still reeking havoc on the PANDAS brain is being kept in check by the Augmentin XR?

 

Doesn't this scenario suggest other possible safer treatment alternatives? Ones that are not as controversial with "conventional" doctors?

 

There are numerous antibiotics that have anti-inflammatory effects such as Emycin and Tetracyclines. These are basically older antibiotics which don't come up in conversations about causing drug resistance. Any resistance these drugs have caused over the years has already taken place. The damage is done.

 

BUT, what about using these older antibiotics not primarily to kill infection, but in sub-antibiotic doses in an anti-inflammatory "cocktail" with an anti-inflammatory diet to keep PANDAS sufferers on a "maintenance program" with periodic checks for strep which would lead to blasts of powerful antibiotics to kill infections. What if we don't really NEED to have PANDAS kids on prophylactic antibiotics after all?

 

Rheumatologists currently use this type of treatment for arthritis and other autoimmune disorders. Since PANDAS is likely a rheumatic type of disorder (if you believe what the latest theories are proposing) then it makes sense to treat it in a similar fashion to other autoimmune disorders.

 

Personally, I'm not going to take that chance now that I have an opportunity to work with Dr. Latimer in Maryland in late September. If she wants to put Blake on prophylactic antibiotics then I am going to happily have the prescriptions filled at CVS. However, I am going forward with pushing for this other treatment regime over the long-term since that is what matters the most anyway.

 

Blake told me this morning that the Concerta she is taking daily at 27mg makes it harder for her to eat since it makes her not hungry. She tells me that her close friend who takes Concerta tells her that she is suffering from depression symptoms related to Concerta. Blake says that she feels depressed all the time and that she is unattractive. She's a 70lb 12 year old with glasses and few friends.

 

I am putting my money where my mouth is on anti-inflammation. Today she started on Eskimo dose IFOS pharmaceutical Omega 3 fish oil which is a very powerful anti-inflammatory that crosses the blood brain barrier. She told me anecdotally earlier that her depression symptoms have lifted. I gave her 7.5 grams or 10 capsules cut open and put in a strawberry/banana/milk shake with protein powder.

 

That's a lot of fish oil, but it is not dangerous at all. There is a blood thinning effect, but nowhere near as problematic as steroids or aspirin for that matter. She is now going on a Zone Diet balanced with 40% Protein / 30% healthy fats / 30% healthy carbs or as near as we can get it. We have to give her the protein powder in Egg White powder since she doesn't eat much meat, but baby steps.

 

I would be interested in some feedback no matter how dogmatic it is.

 

We PANDAS parents desperately need another track we can take with "mainstream" doctors. What if Sammy (from Saving Sammy) was benefiting not as much from the Augmentin XR killing his strep, but from Augmentin XR's anti-inflammatory effects? Can we reproduce the same results with other safer treatments?

 

The null hypothesis is that it's really the antibiotics which are keeping the strep infection at bay and not allowing antibodies to be produced in the first place. That's the primary "battle line" in the battle. The experimental hypothesis I propose is that it may be the inflammatory response that is the primary "battle line" in the PANDAS battle. If the experimental hypothesis holds any water, we can likely develop safer treatment protocols for PANDAS kids, ones that may be more acceptable to pediatricians worldwide.

 

It's a HUGE question. There's a lot of needless suffering hanging in the balance.

 

Dave H.

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It is my suspicion (nearing an belief) that the primary clinical improvement in symptoms of PANDAS children who are taking antibiotics (prophylactic or otherwise) is due to the anti-inflammatory characteristics of certain antibiotics...REGARDLESS if there is any infectious agent there or not.

 

I think many of us would completely agree with this and you are not on an uninhabited island - more like Nassau, The Bahamas. Lots of conversations in the archives about the anti-inflammatory qualities of abx, IVIG, etc.

 

Let's say the doctor gives the malnourished "turbo charged" PANDAS child a blast of steroids. Symptoms resolve almost immediately. Inflammation zapped, symptoms resolve. Now the clock is ticking though. The steroids start doing their work on the immune system and the symptoms start to accumulate. Zap, the child is taken off steroids. PANDAS returns.

 

I don't think this applies only to Pandas kids with eating restrictions. I think this is true for all Pandas kids. However, we have personally had Pandas go into remission with a 4 week prednisone taper because I believe any triggering infection or exposure was gone and the prednisone was sufficiently long to halt the inflammatory effects.

 

 

Enter antibiotics.

 

Augmentin XR has been shown in studies to have a positive effect on Alzheimer's sufferers. Are we to assume that the Augmentin is killing some sort of infection which is leading to the improvement in these patients? No, it's actually the anti-inflammatory characteristics of Augmentin that are helping these patients.

 

The book Cure Unknown also discusses a hypothesis that some Alzheimer's patients may have Lyme, so in that case, an antibiotic may be treating an infection as well as providing anti-inflammatory relief.

 

 

BUT, what about using these older antibiotics not primarily to kill infection, but in sub-antibiotic doses in an anti-inflammatory "cocktail" with an anti-inflammatory diet to keep PANDAS sufferers on a "maintenance program" with periodic checks for strep which would lead to blasts of powerful antibiotics to kill infections. What if we don't really NEED to have PANDAS kids on prophylactic antibiotics after all?

 

Rheumatologists currently use this type of treatment for arthritis and other autoimmune disorders. Since PANDAS is likely a rheumatic type of disorder (if you believe what the latest theories are proposing) then it makes sense to treat it in a similar fashion to other autoimmune disorders.

 

I'm with you on the desire to lower the dose of "prophylactic" abx we're on, but not as comfortable using one that isn't a good strep fighter and since getting to a Pandas doc is not a short trip around the corner, getting rapid and aggressive antibiotics at the first sign of trouble would be a nerve-racking proposition for me. Not sure about your daughter, but my kids have impeccable timing and always get sick at 5:05 pm on a Friday or 12:05 on a Saturday after the doctor's office has closed for the weekend. Further complicating things is that my son is a "canary" and reacts to exposure to strep, not just infection. Having him periodically checked would mean nothing. I hate having him on high dose abx long term. But having Linda Blair move back into the house is not something I would ever want to risk again.

 

 

We PANDAS parents desperately need another track we can take with "mainstream" doctors. What if Sammy (from Saving Sammy) was benefiting not as much from the Augmentin XR killing his strep, but from Augmentin XR's anti-inflammatory effects? Can we reproduce the same results with other safer treatments?

 

The null hypothesis is that it's really the antibiotics which are keeping the strep infection at bay and not allowing antibodies to be produced in the first place. That's the primary "battle line" in the battle. The experimental hypothesis I propose is that it may be the inflammatory response that is the primary "battle line" in the PANDAS battle. If the experimental hypothesis holds any water, we can likely develop safer treatment protocols for PANDAS kids, ones that may be more acceptable to pediatricians worldwide.

 

It's a HUGE question. There's a lot of needless suffering hanging in the balance.

 

I'm with you completely on this one. I've in the middle of reading a book on yeast infections and it's symptoms (I have a son -it's not so easy to detect). The symptoms include brain fog, adhd, moodiness, irritability, stomach complaints...things that are part of the Pandas symptom list and the Lyme symptom list. So who the heck knows. But after a year on abx, it's a good chance my son has rampant yeast overgrowth. Maybe diflucan should be part of the same prophylactic regimen. Maybe the reason so many forum members talk about improvements on a GF diet isn't due to a gluten intolerance but rather a benefit of starving the yeast. Yeast overgrowth also causes big time inflammation of the GI tract, leaky gut, and...elevated C3 complexes (something both of my kids have, including the non-Pandas one who has GI issues).

 

Likewise, both prednisone and Motrin bring us great relief from Pandas - another clue supporting the "inflammation is evil" theory. Unfortunately, both have nasty effects long term. Even Diflucan can take a toll on the liver. So I think yes, we need to be adding anti-inflammatories into the mix, something that is likely to get more mainstream support (and a whole lot more affordable than IVIG or pex). But I've yet to find something that has huge upside for little downside.

 

But I think immune-modulating also needs to be a factor. And I'm not ready to abandon the safety net of antibiotics - the downside is, for my family, far too great until we find a reliable alternative.

 

But great conversation starter...

Laura

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Hi David,

 

Our dd has been on Azithromycin for over 2 years and that is a big question, is the benefit we're getting at this point mainly anti-inflammatory, or is there some strep still hiding out (intracellularly, maybe in the sinuses, tonsils, or ??)

 

You might be interested in this post http://www.latitudes.org/forums/index.php?showtopic=9372&pid=78698&start=&st=#entry78698 where the child had been on daily (maybe needed 2x daily?) Augmentin for months, and then Azithromycin 500mg/day for 3 mo. ....and when the tonsils were recently removed/cultured they were still incredibly infected. So, it is definitely possible for bacteria to "hide out" despite months (and good doses) of antibiotics.

 

I also wonder if strep if unique in that it can go intracellular and "hide out" (I would compare this to chicken pox which "hides out" in the nerves, only to cause shingles decades later). Perhaps in this situation, strep is present albeit in small enough amounts (when the strep is released from the cell, but enough to perpetuate the inappropriate immune response? The other possibility is that strep is gone, but it is the open blood brain barrier perpetuates the perpetuates the inappropriate immune response.

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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.

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My dd is also on a low dose of Prozac (10mg/day), and I've wondered (it seems to help) if the benefit for her is b/c of its anti-inflammatory/immune modulating properties. (Of course SSRI's can be a real double-edged sword with PANDAS kids, and many of these kids do worse on them.) The info. below is from Wikipedia (which btw, has horrible biased info. on PANDAS, but that is besides the point!) http://en.wikipedia.org/wiki/Antidepressant :

 

Anti-inflammatory and immunomodulation

 

Recent studies show pro-inflammatory cytokine processes take place during clinical depression, mania and bipolar disorder, and it is possible that symptoms of these conditions are attenuated by the pharmacological effect of antidepressants on the immune system.[59][60][61][62][63]

 

Studies also show that the chronic secretion of stress hormones as a result of disease, including somatic infections or autoimmune syndromes, may reduce the effect of neurotransmitters or other receptors in the brain by cell-mediated pro-inflammatory pathways, thereby leading to the dysregulation of neurohormones.[62] SSRIs, SNRIs and tricyclic antidepressants acting on serotonin, norepinephrine and dopamine receptors have been shown to be immunomodulatory and anti-inflammatory against pro-inflammatory cytokine processes, specifically on the regulation of Interferon-gamma (IFN-gamma) and Interleukin-10 (IL-10), as well as TNF-alpha and Interleukin-6 (IL-6). Antidepressants have also been shown to suppress TH1 upregulation.[64][65][66][67][68]

 

Antidepressants, specifically TCAs and SNRIs (or SSRI-NRI combinations), have also shown analgesic properties.[69][70]

 

These studies warrant investigation for antidepressants for use in both psychiatric and non-psychiatric illness and that a psycho-neuroimmunological approach may be required for optimal pharmacotherapy.[71] Future antidepressants may be made to specifically target the immune system by either blocking the actions of pro-inflammatory cytokines or increasing the production of anti-inflammatory cytokines.[72]

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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!

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Hi Dave -

 

You might be interested in some of the work being done by the DAN! group in Florida (Dr. Bradstreet & Rosignol and Scott Smith, PA) on spironolactone, an anti inflammatory. This group focuses mainly on Autism, but has a keen interest in PANDAS, especially as it relates to Autism symptoms.

 

Here's a link to an article

 

http://www.vitalitywellness.com/education/pdfs/Spironolactone.pdf

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I have been leaning towards inflamation as the issue for a while - I think that is a common concern in the PANDAS community - since for us, prednisone is a miracle, blips follow the dosage of Azith (know to be anti-inflam), and since Motrin is great for her in blips. My questions is always what triggers the inflamation. Is there a virus untreated, perhaps in gut? Bacteria? We are religious about omegas, and have been for a year. We are also interested in NAC, but have not been able to find an expert to discuss this with at this point. I'm heading from her to the spironolactone, that kimballot suggested - I know Stephanie2 has also posted about this in the past.

 

There are also some great threads about the dose of IVIG - with over 1.5 being anti-inflam - and doses under 1 being inflam. So interesting!

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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.

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Well, in our case, Omega's have a terrible effect on our daughter. We even have to avoid the Omegas's that are added to eggs and other food. Yet Augmentin had a wonderful and amazing effect on our daughter who has tics, ADHD, and a high CamK.

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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.

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Laura,

 

Thanks for the detailed response.

 

Read up on Oil of Oregano for yeast infections. There is no more powerful candida fighter in the world than really powerful Oil of Oregano. I have a bottle of the concentrate with the highest rating of the active chemical for effectiveness. Some survivalist store in the west grows and stocks the best stuff in the world. They use it for a natural antibiotic and yeast killer. I can get you the name of the place because they send me emails on a regular basis. I can't get off their list even though I'm not a survivalist.

 

You have to use an eye dropper to dilute it with olive oil and then put several drops under the tongue each day to completely kill candida yeast. Dr. Atkins the famous diet doctor was big on killing candida yeast infections and raved about this cure.

 

It is NASTY stuff though. It is so overpowering on the oregano side that you will not want to use the spice on your pizza again for a while. Imagine oregano so spicy and powerful that it's on the scale with Habanero peppers. It costs about $20 per bottle which will last for years.

 

Dave

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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.

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Well, in our case, Omega's have a terrible effect on our daughter. We even have to avoid the Omegas's that are added to eggs and other food. Yet Augmentin had a wonderful and amazing effect on our daughter who has tics, ADHD, and a high CamK.

 

TRG, I'm not disputing your experience with "Omegas", but I'd like a little more information from you before I buy that they were causing terrible effects on your daughter.

 

I am vaguely aware of Omega 3 oils that product manufacturers claim are added to foods, but like everything else marketers do it's a joke.

 

I have read multiple books on Omega 3 fats and find it very hard to believe that the real and pure oil could have anything but a hugely positive effect on inflammation, and PANDAS of course.

 

The only bad thing about Omega 3 supplements is that they contain unsafe levels of mercury and other toxins in the cheap store shelf supplements found at Costco, Walgreens, Safeway or GNC for that matter. You need to supplement with pharmaceutical grade IFOS certified fish oil ONLY and in HIGH DOSES.

 

They refer to these doses as "Eskimo Doses" of fish oil. This means that you are giving your child a similar dose of fish oil to that of the average Eskimo in a country like Greenland where they eat mainly fish for all meals.

 

PANDAS and autoimmune disorders along with cancer, heart disease, and other chronic diseases are statistically lower in these populations. Mercury is nasty stuff along with PCBS. Fortunately, you can supplement with purified fish oil which may be expensive, but it's something you need to try again. Stay away from eggs etc. and cookies that tell you they have Omega 3's. Read the book Omega RX by Dr. Barry Sears and his other book the Anti-Inflammation Zone.

 

I don't want to dispute you here, but it's virtually impossible outside of a food allergy to have Omega 3s cause PANDAS to actually get worse.

 

I'm with you on Augmentin.

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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.

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