Crosspost: IVIG and gut bacteria/strep - PLEASE help!!!

[Guest guest]

First my main question: does IVIG help eliminate bad gut bacteria as well as

strep? I just don't know much about IVIG and what it can do...

We have gotten ourselves into quite a situation. Back in Aug. my son got strep

throat with a major PANDAS flare. Our (then) DAN refused to give us more than 5

days of zithromax so of course all the symptoms came back. While waiting to get

in with another DAN, we went from doc to doc to get more zithro. Over those

couple months, my son developed high hippuric acid (gut bacteria)/ammonia (and

of course yeast) due to the chronic high-dose antibiotics. By Dec. he was

completely psychotic/aggressive, worse than anything we have ever seen. The new

DAN helped us fix the gut bacteria but then when he and his brother got a staph

infection recently and had to take a course of antibiotics, he became aggressive

again (I'm talking, biting/hitting/throwing/turning over furniture. my husband

is out of town for 5 months so I had to send my 2 year old to live with

grandparents).

So the DAN gave us vancomycin for the bacteria and diflucan for the yeast.

Within 4 days he was better, no aggression. However, when I gave him a

prophylactic dose of zithromax he became aggressive again. Not to mention, the

low-dose zithro is just not taking the pandas symptoms away completely. So now I

am stuck with bacteria and strep (aggression and PANDAS).

The way I see it my only way out of this nightmare is IVIG. Honestly, I am

looking for a quick fix here so that my son's aggression stops and I can bring

my 2 year old home (who also has PANDAS/ASD symptoms and really needs my

attention/protocol). I am spread so thin...

Any input on what IVIG can do for us would be greatly appreciated.

Sincerely,

[Guest guest]

> We have gotten ourselves into quite a situation. Back in Aug. my son got strep

throat with a major PANDAS flare. Our (then) DAN refused to give us more than 5

days of zithromax so of course all the symptoms came back.

I did three rounds of Zithromax with my #4, but the strep just came back after

each one. For the fourth time, I gave OLE instead of Zithromax, and the strep

never came back.

>>Not to mention, the low-dose zithro is just not taking the pandas symptoms

away completely.

What is the main PANDAS symptom? If it is OCD, for my son the OCD was caused by

much more than just strep.

Sorry I don't know anything about IVIG.

Dana

[Guest guest]

Dana,

I have tried OLE and I did notice a difference, but I just couldn't keep up with

it. I was dosing it 3 times a day and then I had to dose the probiotics twice a

day away from the OLE, so I was looking at giving supps 5 times a day (not to

mention sneaking in his room at night for B12 shot). I have 2 boys with PANDAS

so to give supps 10 times a day, with my husband out of town (for 5 months) was

becoming nearly impossible (they are age 2 and 5 so they are not completely

compliant about taking supps). I decided to do zithro b/c it is only dosed once

a week, allowing me to go back to giving supps 2-3 times a day.

But now with the gut bacteria/yeast problem being so intense, I am afraid to

give another dose of zithro!!

Not sure what to do!

Oh, I think for both of my boys they are more tic-predominant, but the OCD

definitely gets in the way at times, too. My 5 year old sometimes has tics so

bad I wonder if he has Syndeham Chorea (sp?).

I def think the OCD is exacerbated by gut bacteria, and maybe tics are

exacerbated by yeast, does that sound right?

> > We have gotten ourselves into quite a situation. Back in Aug. my son got

strep throat with a major PANDAS flare. Our (then) DAN refused to give us more

than 5 days of zithromax so of course all the symptoms came back.

>

>

> I did three rounds of Zithromax with my #4, but the strep just came back after

each one. For the fourth time, I gave OLE instead of Zithromax, and the strep

never came back.

>

>

> >>Not to mention, the low-dose zithro is just not taking the pandas symptoms

away completely.

>

>

> What is the main PANDAS symptom? If it is OCD, for my son the OCD was caused

by much more than just strep.

>

> Sorry I don't know anything about IVIG.

>

> Dana

>

[Guest guest]

> >>Not to mention, the low-dose zithro is just not taking the pandas symptoms

away completely.

>

I have not done IVIG for several reasons:

1) it is comprised of immunoglobulins from multiple blood donors. I am not 100%

confident that this would be totally safe - you just don't know when it involves

blood products.

2) it is invasive - like a 6+ hour IV

3) it is expensive and seems like you never know how many are required.

4) I haven't read a whole lot of success stories/testimonials -- maybe some

incremental benefits in some kids but other unresolved issues; not a magic

bullet.

In our case PANDAS-type symptoms seemed to be from strep in the gut that were

protected in biofilms and keep producing toxic by-products, and perhaps a leaky

gut that allowed the toxins to circulate. Penicillin and zithro did nothing for

us long-term. What we've done:

1) homeopathic strep. homeopath r/xed a single high potency dose. It helped.

2) stopped supplementing calcium. bacterial biofilms utilize calcium.

3) 1 cap of lumbrokinase at night for around 1 month - He tested well for this

on a Zyto scan - and it happens to be a strep biofilm enzyme. Then an

anti-microbial 1/2 hour later after the night dose. We used Nutramedix Cumanda

drops (also because it Zyto tested well) for awhile, and sometimes OLE, but one

cap of Phyto-Biotic (combo of oregon grape, berberine and goldenseal) seemed to

work best for him. he has phenol issues so sometimes a cap of no-fenol as

well...

4) probiotics in the morning to replace the good guys...with NO strep.

thermophilus strains.

5) chelation (DMSA/ALA) round 1-2 times a month with apple pectin and activated

charcoal at the end of rounds.

5) occasionally inositol/IP6 for boosting immune system and milk thistle for

liver support.

This is just my experience of what has kept things in check thus far.

PJ

[Guest guest]

> Dana,

> I have tried OLE and I did notice a difference, but I just couldn't keep up

with it. I was dosing it 3 times a day and then I had to dose the probiotics

twice a day away from the OLE, so I was looking at giving supps 5 times a day

Try the OLE 2x per day and the probiotics 1x per day. See if that works.

> But now with the gut bacteria/yeast problem being so intense, I am afraid to

give another dose of zithro!!

Zithro did not help here, the strep just kept coming back until I gave OLE.

> Oh, I think for both of my boys they are more tic-predominant, but the OCD

definitely gets in the way at times, too. My 5 year old sometimes has tics so

bad I wonder if he has Syndeham Chorea (sp?).

Tics at my house were mostly caused by yeast, but sometimes their yeast symptoms

were the same as their bad bacteria symptoms, so for your children it might be

caused by bacteria also.

> I def think the OCD is exacerbated by gut bacteria, and maybe tics are

exacerbated by yeast, does that sound right?

This is how it was at my house. OCD was also caused by viruses and B12/folic

deficiency.

Dana