Biofilm protocol for PANDAS?

[sweetpeamom]

Hi,

 

I am new to this forum and would greatly appreciate any advice that you can give me regarding the treatment of PANDAS in my ds8. His DNase-B Antibody test is 1150, and his antistreptolysin O screen (Ab) is reactive. Does this, in the absence of clinical symptoms, signify PANDAS? Probably a stupid question, but I'm very new to this subject.

 

He had an OCD/hoarding spike in Dec./Jan. which resolved on its own. He has symptoms of ADHD that are well-controlled with gfcf, Feingold diet plus a wide array of supplements. Our DAN! doctor has encouraged us to research the biofilm protocol. I would be happy to outline it here if anyone is interested. My main concern with it is that it involves a small dose of a chelating agent (6 drops of NaEDTA; ds is 65 lbs.). I would be very interested to hear if any of you have had success with this...or not.

 

Thank you.

[peglem]

His DNase-B Antibody test is 1150, and his antistreptolysin O screen (Ab) is reactive. Does this, in the absence of clinical symptoms, signify PANDAS? Probably a stupid question, but I'm very new to this subject.

 

Not a stupid question- there is a lot of confusion about strep titers. But, the answer is no, w/o clinical symptoms-no PANDAS. These titers are just an indication that the immune system has responded to strep exotoxins. However, the OCD/hoarding and ADHD are(or at least can be) clinical symptoms of PANDAS.

 

I've never tried the biofilm protocol, but am leary of chelating agents.

[NancyD]

We tried biofilm protocol a few years ago and it did not in any way help with

Pandas symptoms. But that's just our experience.

 

Nancy

[GraceUnderPressure]

I would appreciate if you would outline the biofilm protocol, please! I have heard of it, but have little idea of what it involves & would like to know more.

 

~Grace

[sweetpeamom]

Here is the biofilm protocol that I received from my DAN! doctor. My main concern with it is the NaEDTA, and also the timing of each supplement and the fact that some of them need to be taken away from food. DS is starving when he gets home from school! Asking him to wait til 4:30 to have a snack seems so tough. He is already taking so many supplements 4-5 times a day. I am concerned about my ability to comply with this regimen, even if it's only 3 days a week, but I will give it a try if I think it will work. So far, I haven't heard from any of you that it's worthwhile....

 

To be done for 3 days in a row every week (i.e., Fri., Sat., Sun.)

 

Take your supplements and antibiotics/herbs as usual for breakfast and lunch

 

3:00 p.m. Vitalzyme take on empty stomach (no food for 3 hours before)

 

4:00 p.m. NaEDTA in water (dosage depends on weight)

 

4:30 p.m. Snack and antibiotics

 

6:00 p.m. FiberPro--1 heaping teaspoon in 6 oz. water (may be taken a second time if detox symptoms pronounced on empty stomach)

 

Bedtime Therbiotic-2 caps

 

Refrain from all dairy, iron rich foods (spinach, red meat...), and supplements containing minerals during the three days on the biofilm protocol

 

Vigorous exercise 2X day and lots of water

[Stephanie2]

I think that biofilm helps if there is residual strep in the gut that you can't get rid of. If the pandas symptoms are from viruses or other bacteria elsewhere in the body, it won't help. Regarding chelation, I am under the impression that chelation helps autism and other issues, and theoretically should help decrease the overall autoimmune response in the body, but I'm not sure if it will "get rid" of pandas. I know our DAN practitioners have done chelation on their kids and they are still left with some pandas issues that they need to maintain. Just my 2cents!

[emst]

I think that biofilm helps if there is residual strep in the gut that you can't get rid of. If the pandas symptoms are from viruses or other bacteria elsewhere in the body, it won't help. Regarding chelation, I am under the impression that chelation helps autism and other issues, and theoretically should help decrease the overall autoimmune response in the body, but I'm not sure if it will "get rid" of pandas. I know our DAN practitioners have done chelation on their kids and they are still left with some pandas issues that they need to maintain. Just my 2cents!

 

 

I agree. Biofilm is good for us, good when you have a body that harbors toxins. There is a DAN notion that Bacteria-Virus-Yeast-Metals form bonds in which it is very difficult to extricate one from another. We have done Biofilm and we've seen some remediations and calming of general symptoms from virus and bacteira.

Having said that in short courses it's not a cure.

People can do well on this when they do it for a long time. Or not. I think it's worth a trial.

Personally we did all do it for 8 weeks once. We now get on it in short bursts 1-2 week when we have bacteria or virus in the house because frequently we'll have just enough of a reaction that we just get foggy or aches & pains and can't shake it unless we do biofilm. There are lots of different ways to do it but upfront is generally an enzyme formula that will break down cell walls of yeast or virus, next is anti fungals, antibiotics or meds for whatever your issue is, and last is stomach calming (small snack like crackers) followed by fiber and or activated charcoal away from other supplements. We like charcoal better but fiber helps some in which case I'd advise both based on my family's experience.

We also note that when on antibiotics like most recently Zithromax we tend to show lower reading for toxins in general and for toxic metals in particular, perhaps bacteria holds metals (?) and antibiotics help rid bacteria. We note also that on the downside we do have a lot of yeast on antibiotics = yes, it's wack a mole.