PANDAS, antibiotics, and yeast

[lfran]

Can anyone address this:

 

It seems that specific antibiotic treatments are the treatment of choice for PANDAS, yet antibiotics in general make one susceptible to yeast infections, which are also implicated for tics.

 

How does this work?

 

Thanks.

[peglem]

Can anyone address this:

 

It seems that specific antibiotic treatments are the treatment of choice for PANDAS, yet antibiotics in general make one susceptible to yeast infections, which are also implicated for tics.

 

How does this work?

 

Thanks.

 

Well, it doesn't work very well for us! I feel like I'm walking a very thin line and I keep falling to one side or the other and getting back up on the line. Next summer, I want to try going off zith and really hitting the yeast hard. Sounds like a recipe for a crappy summer! Anyway, if the strep comes back, we can always add the zith back in. I just feel like I don't really have a shot at getting rid of the yeast as long as she's on antibiotics.

[EAMom]

So, pegelm...if you took your dd off Az. in the summer maybe you temporarily could switch to pennicillin? Does pen. cause less yeast problems b/c it is so narrow spectrum (kills fewer types of bacteria?)?

[peglem]

So, pegelm...if you took your dd off Az. in the summer maybe you temporarily could switch to pennicillin? Does pen. cause less yeast problems b/c it is so narrow spectrum (kills fewer types of bacteria?)?

 

I could do that...but I want to get her off antibiotics. I have this idea that her problems started with yeast...long, long ago. She doesn't seem to produce much in the way of antibodies. So, in keeping with my biofilm theory (which is why I think the zith is the only antibiotic that seems to work-but it could be antiinflammatory), if the zith has been able to wipe out the biofilms, then I should be able to eradicate the yeast and get her immune system working again. I don't believe my daughter's case is autoimmune because wouldn't she need to be producing antibodies to attack her basal ganglia? I think she is suffering from the toxins produced by the strep and yeast. Her pediatrician is very good about discussing these things with me and doing what we can. I dream about the day when my daughter will have an actual fever!

 

Anyway, I want to give it a try- if it doesn't work, we'll have to figure out something else.

 

I don't know if you remember my daughter's zith regimen. She gets 250mg/day for 5 days and then 7 days off. When we first started- streppy behaviors would begin returning on the 4th day off, by the 7th day off, she was pretty bad. Now, i don't see streppy behaviors until @ day six, but they are not as severe as they used to be. I'm looking for a period of time when I can't tell the difference in behavior when she's off or on. Then I'll feel really safe to try taking her off.

 

BTW- I have no idea if the yeast problems are less w/ pennicillan or not. I don't see why they would be. (and yeast CAN participate in biofilms with bacteria!)

[EAMom]

I would think (but I don't really know for a fact) that penicillin (vs. a broad spectrum antibiotic) would make one less prone to yeast since pen. pretty much only gets the strep but leaves the other bacteria....whereas Azithromycin, Keflex etc kill off lots of bacteria besides just strep.

 

If your dd is PANDAS then I would think (hope) there would come a time when the intracellular bacteria would eventually die off (with the Az. long term) and then in theory you could go off it. The reason for the penicillin would be to prevent a *new* strep infection from taking hold, i.e. not give the *new* infection a chance to get colonized and go intracellular, thus starting the whole cycle all over again. Also, it is my belief that subsequent PANDAS episodes are harder to control/more severe...thus it makes sense to prevent a new episode.

[bmom]

Eamom,

Have you always given probiotics with the antibiotics or never or started later? Thanks.

[EAMom]

re autoimmune theory and antibodies...

 

I think it *is* possible that PANDAS is autoimmune...but the antibodies that are the culprits aren't necessarily ASO and anti-DNase...for instance, there be anti-brain antibodies in the CSF (which would be very difficult to measure) which are attacking the basal ganglia.

 

Also, we don't know if the antibody thing is linear...if these kids are acting like they are "allergic" to strep, it could take only a very small amount of antibody to trigger this inflammatory response in the brain.

 

But you are also right... it is possible that PANDAS could be a response to strep toxins etc.

 

Or...could be a combination of all of the above?

[EAMom]

Dd didn't start probiotics until June (she started antibiotics in March). I give the one's from Trader Joe's...who knows if they are any good? They aren't the kind you put in the fridge. PANDAS dd has no yeast problems that I am aware of...maybe she's just not prone.

 

Her younger sister had had yeast problems from time to time over the years. She had also been on abs from time to time due to ear infections, perhaps that is why?. PANDAS dd never got ear infections...in fact I don't remember if she had ever been on antibiotics in her whole life until March when we figured out she had PANDAS.

 

I figured out this weekend that my kids love smoothies that I can make at home...the yougurt has a lot of the same bacteria as in the probiotic. Maybe that'll help younger dd (she doesn't take probiotics, doesn't swallow pills either) in the future.

[Indigo]

My dd is on Clarithromycin for the PANDAS for now and diflucan for yeast.

[P_Mom]

Yes..broad spectrum antibiotics (Zith) are much more likely to create a yeast problem than the narrow spectrum antibiotics. (penicillin)

Also, what I was thinking about today, as far as the toxins causing the symptoms as opposed to the antibodies...... if that were the case, than why do my PANDAS kids flair with ANY illness? I am on the antibodies causing PANDAS side of things.....that is why, I believe, IVIG and steroid burst (as well as PEX) can be so effective...IMO.

 

Kelly

[CSP]

Just a thought... you could have the OAT test done to see how bad the yeast is in your child. My son had the Metametrix OAT.

 

CP

[peglem]

re autoimmune theory and antibodies...

 

I think it *is* possible that PANDAS is autoimmune...but the antibodies that are the culprits aren't necessarily ASO and anti-DNase...for instance, there be anti-brain antibodies in the CSF (which would be very difficult to measure) which are attacking the basal ganglia.

 

Also, we don't know if the antibody thing is linear...if these kids are acting like they are "allergic" to strep, it could take only a very small amount of antibody to trigger this inflammatory response in the brain.

 

But you are also right... it is possible that PANDAS could be a response to strep toxins etc.

 

Or...could be a combination of all of the above?

 

Oh, I definitely think there could be an autoimmune PANDAS, I just think my daughter's isn't(I have not given up my right to be wrong, tho) because when she saw the immunologist, he had trouble provoking an antibody response. Her histamine levels and IgE levels are low as well. It seems more likely that she's reacting to the toxins. I may be completely wrong, but that's my best guess, based on what I see with her. I think right now PANDAS is a temporal correlation between strep+ and sudden onset or sudden exacerbation of behaviors. I think there is room there for multiple etiologies.

[EAMom]

P.Mom,

 

Hmmm, interesting point about the IVIG and steroids...

 

Well, a disease doesn't necessarily have to be autoimmune to respond to steroids. Asthma for example, is not autoimmune. (But it is inflammatory.)

 

I looked up IVIG on wikipedia...IVIG is not only used for autoimmune disorders but also, some inflammatory conditions, immune deficiencies, cancer, infections (pediatric HIV) etc... So we can't know for sure that IVIG works b/c PANDAS is autoimmune.

 

I would say there is definitely harmful inflammation (eg. enlarged basal ganglias on MRI) going on with PANDAS... it could also be that the strep toxins are causing some sort of ongoing brain inflammation...like a bee sting or asthma of the brain. Maybe once your brain is so inflamed, ie has "asthma/Pandas" , other viruses/bacteria can irritate it just as cigarette smoke or cat allergens could push a person with asthma "over the edge"?

[P_Mom]

Hi EAMom,

 

Interesting points and I must say I am only debating a few points on this because of our "possible" use of IVIG...I like to cover all my bases.

 

Yes, steroids are used for immune supression and to reduce inflamation, however, the inflamation seen is Asthma is induced by an abnormal immune response to begin with...that is why steroids can be so beneficial...they possess those two qualities needed.

 

Also, yes, all those conditions you listed are helped by IVIG, and, all those conditions involve the immune system (antibodies) in some fashion....the inflamatory conditions are helped by IVIG because the IVIG somehow "stops" or "blocks" the antibodies responsible for the inflamation...the others, the deficiencies, cancer, pediatric HIV..these are all conditions where people need antibodies...the IVIG gives them these.

 

I am rallying for the autoimmune side of it because if we ever do IVIG...I want to know what I am doing and why. Sure..I could be worng...it just doesn't seem to be able to be the toxins to me. PANDAS kids respond to antibiotics..steroids...IVIG...PEX..these are all immune modulating interventions, after the immune system is held in check, the resulting inflamation seen in these kids due to the immune attack gets a chance to slowly heal. The bummer is that repeated attacks can result in a "baseline" change.

[EAMom]

Yes, well I totally agree that PANDAS kids have an abnormal immune response to strep and excess inflammation...I just can't decide if it qualifies as techinically "autoimmune" ....I guess that is okay if Sue Swedo doesn't know either.

 

I like your statement about repeated attacks resulting in a "baseline change"....I hope this isn't true but I think it might be...so we end up with kids with chronic tics (or other problems) which didn't have to be that way if their PANDAS was appropriately controlled (eg with prophylactic abs or possibly IVIG) vs. just treating their symptoms (with meds for tics or OCD) for years on end.