Pandas...and yeast...and H pylori...and herpes

[coco]

Well, we are members of the yeast club. Had my dds stool tested via our naturopath and it was off the charts high. I had my suspicions all along but buried my head in the sand, not wanting to deal with yet another thing! She exhibits almost the complete list of behavioral yeast symptoms, but as you know many overlap pandas. She's been on 1000mgs augmentin lately (biaxin prior for mycoplasma) zithro for pandas -- mixing it up. Anyway, we've never gotten her to 100% remission since we discovered almost 4 yrs ago...about 75% at best, but we always backslide. Have had almost 9 months of weekly ivig...no big miracles there. No Lyme or Lyme-co, just band 41. Dr t flags that as indicative of other Lyme-like flagelite (sp). Here's the thing, she has done pretty well on augmentin, but yeast et al is dragging her down. She still has "tap everything once" OCD, anxiety, enuresis at night, but her mood has been better, math better, handwriting better.

Would you stop abx and focus only on killing yeast, h pylori, and herpes? Our homeopath was not sure about stopping abx but thought we might give it a try. We see dr b at end of the month but want to have your experience.

 

Apparently I am doing a good job with her probiotics, goat kefir. Those numbers look good. But it obviously can't keep up. Oh, we also have some gut permeability so are taking supps to address that.

 

This stool test also did DNA to determine which abx, anti-fungals and some herbals she has resistance to. Good to know for sure. Also tests for gluten.

 

Your advice is appreciated!

[dcmom]

Hey Coco-

 

My kids don't have as many infections (Hpylori, herpes, myco), so I can only give you our experience.... We definitely do not seem to need regular antibiotics for pandas to stay well. I had both girls OFF of all antibiotics this summer, with no change. This school year they have done a prophylactic dose of twice weekly. Recently one daughter seemed to be having some diarrhea associated with the antibiotic days, so I have taken her off all antibiotics again for now.

 

So my thought would be that you may not need all the antibiotics for the PANDAS. The decision would be whether the infections are gone or at least under control.

 

I have been wondering about yeast myself, lately. I need to look into the symptom list, we seem to be fine outside of exacerbation- but the diarrhea possibly associated with the antibiotic days had me wondering. I had some diflucan in the cabinet, so I gave dd two weeks, in hopes of helping her gut (if it was needed). I have also temporarily added Florastor. She has had no issues since I took her off the abx.

 

I have been wondering if it would make sense for our kids, who are on years of antibiotics, to do some type of every six months do a course of diflucan as a matter of course. I plan to discuss this with my doc when I see him.

 

What is the test for yeast? Is it accepted in "mainstream" medicine?

 

Hope you find some answers....

 

Eileen

[LNN]

If Dr T did your lyme test, was it only the standard WB? Or have you used a lab that looks at other bands and that lab is also negative? I respect Dr T but do not share his confidence in standard WBs.

 

My DS always responded well the Pandas treatments (except IVIG) but we too could never obtain 100% or a remission greater than 2 months without backsliding. We treated for lyme and got a 4 month improvement - our longest, but again backslid. We then found pyroluria - a genetic zinc/B6 deficiency. Once we started supplementing for that, we saw immediate and lasting improvement. It's been dramatic. We enjoyed a record 5 1/2 month remission. Then DS got strep a few weeks ago and had a mild Pandas flair - like a 2-3 instead of a 10. And he pulled out of it quickly, not the 6-9 weeks it once took. So not cured, but I'll take this any day.

 

If baseline eludes you and she can't get off abx yet can't fight the yeast despite the probiotics, keep digging. I'm not sure dr T will endorse pyroluria testing, but it's the best $70 test we ever did. Perhaps your homeopath might indulge you with signing off on the test? It was not our only issue, but it was the foundational issue that kept everything else from moving forward. It's similar to what fxcfer has found for her son. Not exactly the same deficiency, but a similar situation. Fix the root problem and other things get 100 times easier to address. Heavy metals such as mercury may also be worth exploring.

 

You mention herpes in your heading but no details. If you have some herpes viruses going on, look into l-lysine. My DD had EBV that she could not shake. L-lysine made quick work of it (tho it does reduce seratonin, so an increase in anxiety is possible but for us, we only needed the l-lysine for 2 weeks and then were able to address the anxiety with tryptophan).

 

Hope you find answers soon!

[coco]

We did igenex testing for Lyme thru dr jones. In my gut I feel that there are still underlying issues. Dr b (at the time) had no idea mycoplasma igg meant anything, but dr t treats it. She did better on biaxin for sure, but then it seems to run out of gas and we make a change or take a break. Only to dive back in again and start all over. Herpes is all over the underside of her nose (she just had a cold) and gets them about twice a year. Ran tests and her titers are high. Dr b did not treat. Even after MONTHS of ivig her

ganglioside gm-1 ABS indicates chronic inflammation. Her hsv 1 is off the charts. Her CD3 immune complexes are 17, normal is 0-8. I am so fed up that these docs are not better on this. My homeopath seems more focused, perhaps because he is so intrigued with my dd and is so dedicated, and he has no other pandas patients...I don't know. Nobody but me (heaven help!) is trying to hone this all together and doctor shop for answers. Maybe dr b know more since we saw him last September.

The stool test is by metametrix in GA. Naturopath ordered the complete panel which cost $395 and took 3 weeks for results but I feel we should have tested long before now. He totally gets the gut/brain connection and the necessity for glutathione and the nuances of not merely giving it orally without other supps to support recycling. He mentioned MTHFR testing before I did. Coordinating this healing (as you ALL know) is H@@L!!

[JAG10]

Our local doc ran a few stool tests that looked for yeast through Quest. Here is our experience regarding "mainstream" medicine... Two daughters tested at the same time. One was positive for "many yeasts" and "fungi" the other not. Local doc prescribed Diflucan which resulted 9 days of goofy, drunk-like behavior with obvious dip in learning, cooperating and compliance (as any drunk person might have.) She then came out the other side. I had taken both girls off abx with your exact same line of thinking. Within days, my younger non-yeasty girl flared with emotional distress and outbursts, urinary frequency and accidents. She had positive myco-p IgM which we thought was taken care of with Zith, but must have just been being kept at bay. She was put on Biaxin and symptoms resolved. My older one that gets regular IVIG, was holding her own, no glaring symptoms to indicate what was going on, but just not as sharp as she had been in the past. Turns out she has strep and myco-p IgM (we just found out this week) and is now on Biaxin. Interestingly, she is now having symptoms from her IVIG this Mon-Tues; headache, nausea, dilated pupils-which she hasn't had in awhile.

 

Back to the mainstream question; so Tues I am talking with Dr. B and we are figuring that it is good news that she has two infections with little symptom outbreak, but need to switch abx. I tell him the only obvious dip she had since last IVIG lined up perfectly with the Diflucan and "drunk-like" is common as yeast die-off. At first, he looked skeptical and said everybody has yeast and he wasn't so sure the value of the stool test. I showed him my other daughter's test that was negative, she too takes abx, and she does not have that "drunk-like behavior" has one of her tell signs. He was open to this and seemed to be reassured it isn't a test "too many test positive" for to deem valuable.

 

So my impression was that yeast is not something Dr. B goes looking for or is that familiar with...however, if he seems like a doctor with an open mind and if he starts to see a trend may begin to investigate yeast more, just like he did with Lyme. I would definitely share the results and discuss it. Was anything prescribed for the yeast? I told him my dd did not have any overt s/s like thrush or vaginal yeast.

[missionmom]

Yeast side effects are very nasty indeed. Do you use a strong heavy dose probiotic? That will help. Dietary changes can help huge too - but your naturopath has probably given you all that info. I am wondering if anyone has used coconut oil on this site for its natural antibiotic properties, in lieu of a prescription antibiotic (even temporarily)? Before all this PANDAS stuff, another of my DS had strep and we used coconut oil for 4 straight days, 2x day, successfully. Lots of great info out there on it. Just wondering if anyone on the forum has tried it?

[missionmom]

Yeast side effects are very nasty indeed. Do you use a strong heavy dose probiotic? That will help. Dietary changes can help huge too - but your naturopath has probably given you all that info. I am wondering if anyone has used coconut oil on this site for its natural antibiotic properties, in lieu of a prescription antibiotic (even temporarily)? Before all this PANDAS stuff, another of my DS had strep and we used coconut oil for 4 straight days, 2x day, successfully. Lots of great info out there on it. Just wondering if anyone on the forum has tried it?

So sorry, I should read more carefully before replying - I see you use goat kefir!

[coco]

Yes JAG! I get the whole "your educating...err, informing" Dr B about yeast, your tests, etc. Yes, I am HAPPY he is willing to treat but it bugs me that something like heavy yeast is poo-pooped when our kids notoriously react to everything. Yes, everybody has yeast, duh, but it's the bigger picture that gets missed. I feel like if we don't clean up everything we will not hold our gains. Naturopath also said that diflucan for short duration is not best. I'm picking up something else today (I'll let you know name) from his office for 30 days at least but is gentler. He also said for our whole family to be treated for h pylori as it's easily passed back and forth. My dds behaviors are so classically yeasty with a big ol scoop of pandas on top of it all.

[coco]

Laura, was your dd's Epstein Barr igg antibody high? My daughter's is way high.

[SSS]

My dd has had yeast issues way before we introduced antibiotics for pandas-

leaky gut, food intolerances, etc. Some say persistent yeast infections could be a sign of heavy metal toxcity.

 

Anyway, it's a hard one once it keeps coming back- diet is a big factor, too- more protein, less carbs and of course obvious sugar in the diet.

Hard with a littler kid (big kid too, probably)

We've done quite a few anti-fungals, and I give tons of excellent probiotics-

but yeah, it's been an issue here forever.

 

ETA: We switched to cooking and using organic coconut oil for just about everything- and sometimes the girls will eat a bit-

while I think it's a grand oil for health, I don't consider it a true anti-fungal fighter.

Edited February 23, 2012 by S & S

[LNN]

Laura, was your dd's Epstein Barr igg antibody high? My daughter's is way high.

 

I don't have her labs in front of me. The IgM was high and I knew it was a recent/current infection - I knew when it all started back in Oct., and the high IgM just confirmed for us that we were dealing with EBV. So I didn't pay attention to the IgG.

 

With your hsv issues, I'd seriously look into the lysine. We tried other things to no avail, but the lysine started to work within a few days.

 

We did the MTHFR testing - DD has one mutation on C677, so we supplemented with methylfolate for a few months. We then tested her folate and B12 levels and they were high, so the methylfolate is in the back of the cabinet. No need to force another pill until she needs it. I didn't get any "aha" response but am glad we tested because it has long term health implications and it's good to know. But did not impact her current symptoms. (DS - the sicker one - has no mutations). I know MommaKath has seen big improvements with methylfolate.

 

I totally hear you on the frustrations. Some days, banging your head against a wall would feel more rewarding. Do trust that gut and keep looking for that underlying missing piece. I'm still looking for my daughter's "source" of issues. But finding my son's pyroluria was a huge turning point. Once you find "it", it makes it all feel worthwhile.