Introduction

[Stephanie2]

Hi Isabel,

 

We have quite a protocol set up with my son to control the yeast while he is on an antibiotic and it really seems to be helping. But before i get to that, I have learned the different symptoms of strep vs. yeast in my son:

 

strep: anger, negative attitude, defiant, ocd behaviors, tics (motor and verbal)

 

yeast: silliness, laughing uncontrollably at nothing, wetting the bed, crashing into or jumping off of the couch.

 

We are still working on the strep protocol (we have a phone consult with Latimer tomorrow...yeah), but I think I have a good yeast protocol going:

 

1st we used 10 days of diflucan (rx antifungal) to get the yeast under control, which really worked. He calmed down and stopped the bedwetting. Then I started a 4-day antifungal rotation: 4 days of Biocidin, 4 days of Oregon Grape, 4 days of Pau D'arco, 4 days of Grapefruit Seed Extract. Then we start over again with biocidin. We also give a lot of probiotics including and especially Saccharomyces Boulardii.

 

There is a list of my son's supplement regimine on my blog (although I havent' updated it to include the antifungal rotation).

 

By the way, my 20 month old son (the "supposedly" non-pandas son) also tested positive for strep in a comprehensive stool analysis and I am thinking that is where my pandas son keeps getting strep from...??? I am going to run this theory by Dr. Latimer tomorrow.

 

Hope this helps!

Stephanie

http://thelight-stephanie.blogspot.com

Hi all,

I just wanted to introduce myself. My 12-yo son has been diagnosed with PANDAS. It took a while to realize what was going on. It has probably been building for some time, but things got markedly worse last february after we all had a very nasty flu. He was never the same after that. We all recovered, but he seemed to lapse back a week after we were all well: high fever, ear ache, vomiting. I took him in and they said it was nothing, they totally dismissed it. After that he was always tired, had a hard time concentrating, and then we started noticing the compulsive handwashing. Along with that came other behavioral changes, like not wanting to go outside, and absolute fear of shoes (which in my house are all over the place -- seven kids!), not touching doorhandles or faucets with his hands (he uses his elbows), not wanting to use the hand towel or kitchen towel to dry his hands (that of course makes his skin a lot worse), not wanting to pet the dog. We went back to the pediatrician several times saying, "there is something wrong with him, he's just not himself" (although at that point we did not mention the OCD, because we did not think it was related to any of the other physical symptons). We were back several times because of fatigue, swollen wrist (she totally dismissed that one!), pain in the knee (she did do a Lymes test).

When the OCD got really bad, through God's grace, I heard a friend of mine talking about a friend of hers whose daughter had had similar issues and had seen great improvement after seeing a certain doctor. So I called this lady, feeling a little awkward about invading her privacy, and she was so willing to share and help.

So we went to the offices of Dr. Zachrison in Fairfax, VA. We saw Dr. Mian, who is the one who usually sees children. I gave her ds's life story, the swollen wrist, the lack of attention, the OCD, the fatigue, the upset stomach off and on. She look him over and said, "I think it's strep." She ordered a bunch of lab tests (17 viles of blood!!! the staff was so good --she tought we would have to do it two separate days but they were great and got it all done in one sitting, which was amazing because he always melted down anytime anyone mentioned needles), including x-rays of his wrists, a cardio consult, a gall-bladder scan, and stool and saliva tests. It felt so good to have someone take him seriously! The tests showed strep in the gut, elevated titers, adrenal fatigue, and some other issues. He has been on amoxicillin, cypro (after the tonsillectomy), amoxicillin again, and now his on cefuroxime and hydroxycloroquine. The last week he has not been doing well, he almost seems back to where we were three months ago. The doctor has been very proactive and always listening to our concerns. I sent an email saying I was worried the antiB was not working and they called from the office saying Dr. Zachrison (who is the big cheese there) would like to see him. So we are going there on Thursday.

Additionally, at the last visit they suggested we see a psychiatrist for some anti-anxiety meds to help him through this rough time. We are open to it but thought before we go that way we should get a second opinion. We got Dr. Latimer's name from PANDASNETWORK, so we will be seeing her on Friday.

Also, ds has been having bed-wetting and day wetting issues. This of course does not help someone who is concerned about germs... he has been changing clothes a lot every single day, it is becoming exhausting to deal with the laundry! But what can I do, he really cannot controll it. Does anyone have any tips on that? It seemed to get better after the tonsillectomy while was on Cypro + Nyastatin. I though it was the Cypro, but now I'm thinking it really is a yeast/candida issue and it was better because of the Nyastatin. I will mention this to the Dr. on Thursday.

Anyway, this is where we are. I am thankful we have a diagnosis and hopeful that this week we'll get some answers. I am just concerned that the antibiotics do not seem to be working (or maybe they are working and all the flare-up is just the beasties dying off and giving out more toxins?), so I will see if I can get them to test the antibiotics in vitro instead of on the child. He had yeast/candida issues even before we started with the antiB and I am worried about the side effects of being on them for so long. He is taking tons of probiotics and other good supplements, but they are costing us a fortune, and it almost seems to be money down the drain with all the antibiotics he is taking...

Has anyone here tried any alternative/natural remedies?

Thanks!

 

Isabel

[matis_mom]

Hi Stephanie,

Very interesting to read your reply... I can definitely see both sides in my son... I will talk to the Dr. about trying out your yeast protocol. I had been searching online and was about to try the Pau d'arco, I am not familiar with Oregon Grape or Biocidin, but it makes sense to rotate things around. How much of each do you use? Do you use essential oils or capsules? I would like to have more details as to when/how/how much to take. We have been doing oil of oregano (I put it into a capsule), and we are also doing a lot of probiotics. I am also trying to keep him of sugar as much as possible. It would be a huge step if we could get the wetting under control!

 

The more replies I get, the more it seems I need to get everyone tested. I know my 5-yo had strep this last winter, I can't remember exactly when, but I think it was after we all had that bad flu that started the whole thing... I need to start journaling who is sick when, my brain just can't keep it all in! I think I will just have to go talk to my pediatrician and lay all my cards on the table. Maybe once she sees the facts she will be willing to work with me. We live in a small town about 1 hr. from DC, and even though I'll do whatever needs to be done to get the specialized help Matias needs, it would be so helpful to have the pediatrician on my side so I can comfortable go get the other kids checked out as needed.

 

Do you do any other herbs/supplements to deal with the strep? Or is your child on regular ABX?

 

Thanks!

 

Isabel

[mama2alex]

About the GI issues, have then run a complete stool panel. Mati's tests were sent to a place called Diagnos-Techs, Inc. They did a "Expanded GI panel".

 

Isabel,

 

This rung a bell with me and I went back through some very old lab reports of my son's. When he was 3 (he's now 9) our DAN doc ran a Comprehensive Stool Analysis / Parasitology x2 through Doctor's Data. Gamma Strep was 4+. Is this what was high on your test? Or was it some other type of strep? I don't know how this relates to Strep A, if at all, or how high 4+ is considered. This specific result was never singled out as a problem in our discussions. If this is relevant to PANDAS, I'm going to have the DAN doc rerun this test.

 

Just fyi, we were having a DAN doc test him because I had just been diagnosed with mercury poisoning (off the charts levels) and we immediately wondered if he'd been exposed through breast feeding or in utero. That is a whole other saga...but related, I'm sure, to our current situation.

 

Please let me know if this is the same result your doctor considered "strep in the gut."

 

Thanks!

Jennifer

[mama2alex]

Isabel,

 

Just wanted to bump this up so you'd see my question. Thought others might be interested in this too!

 

Thanks,

Jennifer

[matis_mom]

Jennifer,

The results read:

GP3: Bacterial Stool Cu. (I guess it stands for culture)

Pathogens/Bacterial Overgrowth Detected:

Alpha Hemolytic Stpretococcus - Moderate

Coreynebacterium species - Rare

 

On the Reference Values/Key column it reads "No pathogens should be detected"

 

That's what she circled and pointed to when she said "he has strep in his gut"

 

I think I mentioned this before, but just in case, the test is called "GI-02: Expanded GI Panel"

 

It also detected very low immune function and low pancreatic enzymes, which he is on supplements for, and are probably due to the long term battle with strep.

It ruled out parasites, worms, food allergies and toxins, so it's good to know there are no other issues in the mix.

 

Hope this helps!

[Stephanie2]

Hi, I will try to answer all of your questions! I used to frequent the autism yahoo groups b/c my 5 year old son tested close to the spectrum but not quite on the spectrum (also my 20 month old showed signs of autism early on but we did not have him tested, just jumped in with interventions which have been very successful). Both of my children are recovered from all signs of autism with the exception of my 5 yo's pandas issues (and the baby's mild speech delay).

 

With that said, the autism groups is where I learned to rotate antifungals...something about if you use any particular antifungal for more than 4 days, the yeast begins to become resistant to it. I did not do any type of antifungal rotation until we began daily use of antibiotics for pandas. I am still developing my system, so I can't give you too many specifics.

 

My son is 44 lbs. For the antifungal herbs, I basically do 1/4 to 1/2 the recommended dose for adults on the label:

Grapefruit Extract: 1-3 drops per day (you have to be careful with this one b/c it has the potential for liver issues, just like regular antifungals).

Pau D'arco: 30 drops per day

Biocidin: 5 drops per day (not sure if this is enough...?)

Oregon Grape: haven't figured this one out yet.

 

Biocidin is only available through a physician. Maybe you could contact the company to ask which physicians sell it...? I get it from Andrew Levinson, our DAN doctor in Miami. But maybe you could just use Oil of Oregano in place of Biocidin (in my opinion, OoO is stronger anyway).

 

Not to further complicate matters, but some of these herbs are high in phenols which can cause some hyperactivity. Sometimes I give a digestive enzyme with it called Phenol Assist by Kirkman Labs. I also put 2 cups of Epsom Salt in the bath every night to help process/eliminate the phenols. You can learn all about this on the autism boards which discuss biomedical interventions, if you are interested. There are many moms on there who's children do not have autism but only have pandas, adhd, etc...very educational. I do not go on those boards anymore b/c I am focused on tackling pandas...

 

Stephanie

 

Hi Stephanie,

Very interesting to read your reply... I can definitely see both sides in my son... I will talk to the Dr. about trying out your yeast protocol. I had been searching online and was about to try the Pau d'arco, I am not familiar with Oregon Grape or Biocidin, but it makes sense to rotate things around. How much of each do you use? Do you use essential oils or capsules? I would like to have more details as to when/how/how much to take. We have been doing oil of oregano (I put it into a capsule), and we are also doing a lot of probiotics. I am also trying to keep him of sugar as much as possible. It would be a huge step if we could get the wetting under control!

 

The more replies I get, the more it seems I need to get everyone tested. I know my 5-yo had strep this last winter, I can't remember exactly when, but I think it was after we all had that bad flu that started the whole thing... I need to start journaling who is sick when, my brain just can't keep it all in! I think I will just have to go talk to my pediatrician and lay all my cards on the table. Maybe once she sees the facts she will be willing to work with me. We live in a small town about 1 hr. from DC, and even though I'll do whatever needs to be done to get the specialized help Matias needs, it would be so helpful to have the pediatrician on my side so I can comfortable go get the other kids checked out as needed.

 

Do you do any other herbs/supplements to deal with the strep? Or is your child on regular ABX?

 

Thanks!

 

Isabel

[pixiesdaddy]

You asked if behavioral therapy was worth it if this was a physical issue.

 

Here's my two cents.

 

Our DD (9) goes to weekly therapy sessions. We didn't feel like they did much while she was in the throes of her worst exacerbations. In fact, sometimes it seemed like more trouble to get her there for what limited benefit it might have had.

 

However, as she's healed some with IVIG and abx, I think the therapy has been an important support. I can see her trying to use some of the coping strategies and calming strategies she's been taught. When the PANDAS was at its worst, she wasn't physically able to access any of the therapy help, but it has really been an aid as her physical symptoms have declined.

 

When the physical symptoms of PANDAS decline, these kids still have all kinds of learned behaviors to which they've become habituated, and therapy can help with that.

 

Pixiesdaddy

[matis_mom]

You asked if behavioral therapy was worth it if this was a physical issue.

 

Here's my two cents.

 

Our DD (9) goes to weekly therapy sessions. We didn't feel like they did much while she was in the throes of her worst exacerbations. In fact, sometimes it seemed like more trouble to get her there for what limited benefit it might have had.

 

However, as she's healed some with IVIG and abx, I think the therapy has been an important support. I can see her trying to use some of the coping strategies and calming strategies she's been taught. When the PANDAS was at its worst, she wasn't physically able to access any of the therapy help, but it has really been an aid as her physical symptoms have declined.

 

When the physical symptoms of PANDAS decline, these kids still have all kinds of learned behaviors to which they've become habituated, and therapy can help with that.

 

Pixiesdaddy

Thanks for the input! We have only tried a few techniques, mainly the deep-breathing and just that one little thing really helps out. He can go from sobbing to relatively relaxed in a few minutes, and from there we can try distraction/delaying... it usually works, but we have to coach him through it. We'll definitely keep working on BT.

[matis_mom]

Hi, I will try to answer all of your questions! I used to frequent the autism yahoo groups b/c my 5 year old son tested close to the spectrum but not quite on the spectrum (also my 20 month old showed signs of autism early on but we did not have him tested, just jumped in with interventions which have been very successful). Both of my children are recovered from all signs of autism with the exception of my 5 yo's pandas issues (and the baby's mild speech delay).

 

With that said, the autism groups is where I learned to rotate antifungals...something about if you use any particular antifungal for more than 4 days, the yeast begins to become resistant to it. I did not do any type of antifungal rotation until we began daily use of antibiotics for pandas. I am still developing my system, so I can't give you too many specifics.

 

My son is 44 lbs. For the antifungal herbs, I basically do 1/4 to 1/2 the recommended dose for adults on the label:

Grapefruit Extract: 1-3 drops per day (you have to be careful with this one b/c it has the potential for liver issues, just like regular antifungals).

Pau D'arco: 30 drops per day

Biocidin: 5 drops per day (not sure if this is enough...?)

Oregon Grape: haven't figured this one out yet.

 

Biocidin is only available through a physician. Maybe you could contact the company to ask which physicians sell it...? I get it from Andrew Levinson, our DAN doctor in Miami. But maybe you could just use Oil of Oregano in place of Biocidin (in my opinion, OoO is stronger anyway).

 

Not to further complicate matters, but some of these herbs are high in phenols which can cause some hyperactivity. Sometimes I give a digestive enzyme with it called Phenol Assist by Kirkman Labs. I also put 2 cups of Epsom Salt in the bath every night to help process/eliminate the phenols. You can learn all about this on the autism boards which discuss biomedical interventions, if you are interested. There are many moms on there who's children do not have autism but only have pandas, adhd, etc...very educational. I do not go on those boards anymore b/c I am focused on tackling pandas...

 

Stephanie

 

Thanks Stephanie, I'll look into it, probably not something I want to do on my own... I'll just see what the docs say tomorrow/Friday.

 

Isabel

[Kayanne]

Hi and welcome to the fourm...I am sorry that you are here, but it is the best place for info. I have been impressed over and over by the folks who post here...and as DCmom said, it really does feel like family. The parents on this forum are DIRECTLY responsibile for my daughter's recovery because they got me in touch with Dr. Latimer.

 

Seven kids...that's AWESOME...I have four, and I get a lot..."Wow, your hands are full!" But I always say, "Better full than empty!" I can totally sympathize with the overwhelming idea of tackling strep in a house...this spring at one point all six of us were on antibiotics, and 3 out of 4 of my kids were on antibiotics multiple times...the ped really believed that we were just ping-ponging it....I don't think so because we were so careful...I just think we had a bad strain, and I know of one other child in our neighborhood who took antibiotics three times also to kick her strep.

 

If you have to tell a fib (they have fevers, or their throats hurt) to the ped, to get him to do a rapid strep test on all of the kids, then I would do it. I have also considered purchasing an at-home rapid strep test...w/a $15 co-pay each visit, it pays for itself. I am just concerned that I may get a false negative...I do think those tests are only as accurate as the sample taken.

 

It sounds like you are off to an excellent start with the doctors you have already found...I am curious what type of practice it is (eg...family, naturopathic, pediatricain, DAN)?

 

I wanted to add my two cents about oil of oregano...I have been hesitant to try it it (I was thinking of it's anti-viral properties) because it's proponents make the same types of claims about olive leaf extract....anti-bacterial, anti-fungal, anti-viral...etc, etc...

 

Olive leaf extract can negate the benefits of a penicillian based antibiotic (penicillian is derived from a fungus)...so I'm worried that oil of oregano can have the same effect...but I can't find anything on the internet that states that oil of oregano can interfere with antibiotics, but I HAVE read that olive leaf extract can negate some antibiotics...they seem so similar that I don't want to take the chance.

 

My DD6 currently takes pen vk 200 2x/day for prophylaxis...so I don't want to risk it. Has a dr told you it was okay for oil of oregano?

 

That takes my line of thinking even further....would taking any anti-fungal (diflucan, nystatin) while on a penicillian based antibiotic lessen/negate the antibiotic?

 

Does anyone know?

 

Georgetown did do a study on oil of oregano...maybe Dr. Latimer is familiar with the supplement.

[matis_mom]

Hi and welcome to the fourm...I am sorry that you are here, but it is the best place for info. I have been impressed over and over by the folks who post here...and as DCmom said, it really does feel like family. The parents on this forum are DIRECTLY responsibile for my daughter's recovery because they got me in touch with Dr. Latimer.

 

Seven kids...that's AWESOME...I have four, and I get a lot..."Wow, your hands are full!" But I always say, "Better full than empty!" I can totally sympathize with the overwhelming idea of tackling strep in a house...this spring at one point all six of us were on antibiotics, and 3 out of 4 of my kids were on antibiotics multiple times...the ped really believed that we were just ping-ponging it....I don't think so because we were so careful...I just think we had a bad strain, and I know of one other child in our neighborhood who took antibiotics three times also to kick her strep.

 

If you have to tell a fib (they have fevers, or their throats hurt) to the ped, to get him to do a rapid strep test on all of the kids, then I would do it. I have also considered purchasing an at-home rapid strep test...w/a $15 co-pay each visit, it pays for itself. I am just concerned that I may get a false negative...I do think those tests are only as accurate as the sample taken.

 

It sounds like you are off to an excellent start with the doctors you have already found...I am curious what type of practice it is (eg...family, naturopathic, pediatricain, DAN)?

 

I wanted to add my two cents about oil of oregano...I have been hesitant to try it it (I was thinking of it's anti-viral properties) because it's proponents make the same types of claims about olive leaf extract....anti-bacterial, anti-fungal, anti-viral...etc, etc...

 

Olive leaf extract can negate the benefits of a penicillian based antibiotic (penicillian is derived from a fungus)...so I'm worried that oil of oregano can have the same effect...but I can't find anything on the internet that states that oil of oregano can interfere with antibiotics, but I HAVE read that olive leaf extract can negate some antibiotics...they seem so similar that I don't want to take the chance.

 

My DD6 currently takes pen vk 200 2x/day for prophylaxis...so I don't want to risk it. Has a dr told you it was okay for oil of oregano?

 

That takes my line of thinking even further....would taking any anti-fungal (diflucan, nystatin) while on a penicillian based antibiotic lessen/negate the antibiotic?

 

Does anyone know?

 

Georgetown did do a study on oil of oregano...maybe Dr. Latimer is familiar with the supplement.

Kayanne,

Thanks so much for the advice... It had never even crossed my mind that the oil of oregano may be negating the antibiotic, I will look into that. I know Nystatin can be used together with the antibiotic, the doctor put him on both simultaneously.

And yes, I have not figured out exactly how we are going to get everyone checked, but we will make sure we do. My husband has his physical tomorrow and he will ask to be checked, and then I think I will just go to the pediatrician and put my foot down and ask that they do the rapid and the culture on all the kids. I will get myself checked too! I just wonder if the insurance will cover it... another out-of-pocket expense!!! I also will start keeping a journal of activities/foods/symptons to see if there is any other trigger. He has a friend he sees only every couple of weeks and has had some stomach/skin issues, I wonder if it comes from there. His mom and I are very good friends and she is getting him tested (the throat came back negative but she was taking him to a GI yesterday and asking for the stool test).

As far as the practice that has been treating Matias, they specialize on rheumathoid-type illnesses, particularly Lymes, but they have had other PANDAS patients as well. We just sort of landed there through a friend of a friend, and I am so glad because I think even a PANDAS doctor would have tended to focus on the throat, and probably not taken a broad look at all the symptoms. I like them because they are MDs (which means the insurance covers 70% of the visit and all the tests, thank God!), but they also do some holistic/alternative medicine things like supplements, homeophathy, probiotics, colloidal silver, etc.

I have a lot in my mind right now, but have to put all these thoughts aside until after our next appointments. I have two pages full of notes/questions to bring to the doctor from all the input I have gotten in this forum. It is not easy for me to be assertive/ask so many questions, but I'll do what it takes!

 

Thanks again!

 

Isabel

[MichaelTampa]

I found a number of enlightening things from this thread.

 

I am interested in anyone's use of oregano oil. I just started taking this morning. I am not on antibiotics (at least yet). Isabel, or anyone else trying it, can you report on if you feel it was helpful?

 

Regarding the strep/candida link, when my candida gets out of control, it does increase all these PANDAS symptoms. I read a post recently from Buster that could have explained this as any other infection causing the blood brain barrier to be weakened and this allows the bad strep antibodies into the brain. So, it could be as simple as that. But I am hearing more of candida and strep, and wonder if there is more to the story than that. Faith--if you look at that post on Dr. Semon you made and TS, that's the same guy I was mentioning to you regarding multiple sclerosis and candida--funny we both ran into that. Basically, he believes he has helped MS and TS with long-term use of antibiotics (nystatin) for candida, which seems like a familiar story, but not quite identical.

 

Isabel--thanks for mentioning the stool test for strep. I went back and looked at 2 old stool tests I had. In 2003, with health not too bad, with Meridian Valley doing the test, I showed no lactobacillus and that was an abnormal result (that's good stuff you want some), lots of "Alpha strep" (4+) but not listed as abnormal result, and lots of "Enterobacter cloacae" and that shown as an abnormal result/pathogen or possible pathogen. In 2008, in the middle/beginning stages of severe health meltdown number two, with Genova Diagnostics doing the test, "gamma haemolytic streptococcus" shows as lots (4+), but as a non-pathogen, even with others listed as possible pathogen. Interesting it is clearly shown, they think it is worth testing but don't think it's a problem when it's there? Must say, I'm a little confused. I hear some mention of only Strep A being bad for PANDAS. Could that be what "Alpha strep" is?

 

Michael

[faith]

I found a number of enlightening things from this thread.

 

I am interested in anyone's use of oregano oil. I just started taking this morning. I am not on antibiotics (at least yet). Isabel, or anyone else trying it, can you report on if you feel it was helpful?

 

Regarding the strep/candida link, when my candida gets out of control, it does increase all these PANDAS symptoms. I read a post recently from Buster that could have explained this as any other infection causing the blood brain barrier to be weakened and this allows the bad strep antibodies into the brain. So, it could be as simple as that. But I am hearing more of candida and strep, and wonder if there is more to the story than that. Faith--if you look at that post on Dr. Semon you made and TS, that's the same guy I was mentioning to you regarding multiple sclerosis and candida--funny we both ran into that. Basically, he believes he has helped MS and TS with long-term use of antibiotics (nystatin) for candida, which seems like a familiar story, but not quite identical.

 

Isabel--thanks for mentioning the stool test for strep. I went back and looked at 2 old stool tests I had. In 2003, with health not too bad, with Meridian Valley doing the test, I showed no lactobacillus and that was an abnormal result (that's good stuff you want some), lots of "Alpha strep" (4+) but not listed as abnormal result, and lots of "Enterobacter cloacae" and that shown as an abnormal result/pathogen or possible pathogen. In 2008, in the middle/beginning stages of severe health meltdown number two, with Genova Diagnostics doing the test, "gamma haemolytic streptococcus" shows as lots (4+), but as a non-pathogen, even with others listed as possible pathogen. Interesting it is clearly shown, they think it is worth testing but don't think it's a problem when it's there? Must say, I'm a little confused. I hear some mention of only Strep A being bad for PANDAS. Could that be what "Alpha strep" is?

 

Michael

 

Micheal,

yes, I'm familiar with the Dr. Semon and his take on yeast and TS. I think we've had a thread on the other board about that. But are you saying that Nystatin is an antibiotic? I thought Nystatin was an anti-fungal, a prescription medication to get rid of yeast/candida, similar to Threelac? I think you may have misunderstood that. I don't think Nystatin is an antibiotic.

 

Faith

[matis_mom]

I found a number of enlightening things from this thread.

 

I am interested in anyone's use of oregano oil. I just started taking this morning. I am not on antibiotics (at least yet). Isabel, or anyone else trying it, can you report on if you feel it was helpful?

 

Regarding the strep/candida link, when my candida gets out of control, it does increase all these PANDAS symptoms. I read a post recently from Buster that could have explained this as any other infection causing the blood brain barrier to be weakened and this allows the bad strep antibodies into the brain. So, it could be as simple as that. But I am hearing more of candida and strep, and wonder if there is more to the story than that. Faith--if you look at that post on Dr. Semon you made and TS, that's the same guy I was mentioning to you regarding multiple sclerosis and candida--funny we both ran into that. Basically, he believes he has helped MS and TS with long-term use of antibiotics (nystatin) for candida, which seems like a familiar story, but not quite identical.

 

Isabel--thanks for mentioning the stool test for strep. I went back and looked at 2 old stool tests I had. In 2003, with health not too bad, with Meridian Valley doing the test, I showed no lactobacillus and that was an abnormal result (that's good stuff you want some), lots of "Alpha strep" (4+) but not listed as abnormal result, and lots of "Enterobacter cloacae" and that shown as an abnormal result/pathogen or possible pathogen. In 2008, in the middle/beginning stages of severe health meltdown number two, with Genova Diagnostics doing the test, "gamma haemolytic streptococcus" shows as lots (4+), but as a non-pathogen, even with others listed as possible pathogen. Interesting it is clearly shown, they think it is worth testing but don't think it's a problem when it's there? Must say, I'm a little confused. I hear some mention of only Strep A being bad for PANDAS. Could that be what "Alpha strep" is?

 

Michael

Michael,

We are not doing the oil of oregano right now, as ds is on strong abxs and I've learned recently that oil of oregano can decrease their effectiveness.

I now some people use herbs solely to keep the strep under control. Someone mentioned you need to rotate every few days, oil of oregano, olive leaf extract, pau d'arco, and I think maybe there was a fourth one in the mix, as they can be hard on the liver. I think maybe it was smartyjones who posted on this.

About candida, when you kill the good bacteria, you give candida a chance to get out of control. They gave my son Nystatin (antifungal) and that did seem to help. There are other things you can do, like kefir and probiotics, to help with candida. Many moms have noticed a series of behavioral symptoms that seem to be related to yeast rather than strep (aggresiveness, giggling, inappropriateness, bed-wetting).

I am not sure what to make of your labs, it seems you need to work on balancing your gut flora. The "alpha" is probably as opposed to "beta". PANDAS is caused by GABHS (Group A Beta Hemolytic Strep, I believe), so that's what you'd be looking for.

Are you working with a good doctor on this? It can be all so confusing, and sometimes when you get one thing under control, something else gets off balance. So I would strongly recommend you try to find someone to guide you through all this.

In the meantime, eat well, try to cut down on sugar, and add kefir and probiotics to your diet.

 

Isabel

[Debbie1]

PANDAS is caused by GABHS (Group A Beta Hemolytic Strep, I believe), so that's what you'd be looking for.

 

Isabel

 

I believe there are a few cases on this forum of kids whose PANDAS symptoms developed in response to non-group A strep.

 

Someone please correct me if I am wrong, but I think that studies were only looking at GABHS (just as they were only looking at a certain age group). That does not mean you cannot have a PANDAS reaction to non-group A strep - just that it hasn't been studied.