Guest guest Posted June 4, 2008 Report Share Posted June 4, 2008 We just had a long conversation about this on the chelatingkids2 yahoo group. Here's my experience. My son never had any OCD, but when we started Flagyl, then Zithromax on top of doing EDTA suppositories he got obsessive thoughts of Satan! It was trippy. He couldn't get Satan out of his mind and he was very concerned that God was not in control. He also woke up with a sore throat one morning - another clue. Our next appt w/ our DAN! was a month away, so I started scanning different yahoo groups for suggestions. First I added OLE - 500mg with each meal. (My son is 100pounds) Next I tried ibuprofen - 2 pills taken with each meal. I got a WOW! His symptoms were relieved. Recognizing that I couldn't keep him on this level of ibuprofen for any extended period of time I got Saventaro Cat's Claw and added one pill at meals, along with New Chapter Zyflamend (2 pills with meals.) Sure enough, the Cat's Claw and Zyflamend did the trick. I was able to stop the ibuprofen. And now, we are simply down to the Cat's Claw. I can't say this recipe will work for everyone, but it worked for us. Below is a post from Dr. Usman about her biofilm protocol which may help to explain her theory about the relationship between antibiotics and EDTA chelation: I am writing this to clarify information that is circulating > regarding the biofilm theory that I presented to the Defeat Autism > Now Think Tank last week. > True Health Medical Center: > " Potential Implication of Biofilm Formation in Patients with ASD " , > Presented to the Defeat Autism Now Think Tank, Oct. 11, 2007 > I presented a theory about the implications of biofilm production by > resistant strains of bacteria/fungus in our ASD patients who have > persistent dysbiosis. The literature search that I conducted with > the help of Conrick, MS and Sonja Hintz, RN was quite > convincing. The abnormal production of biofilm by resistant strains > of microorganisms may be a possible etiology of why many of our > patients who do not have positive stool cultures for yeast or > pathogenic bacteria do well when placed on antifungals and > antibiotics, yet relapse when they stop. The biofilm produced by > these resistant organisms can only be seen by electron microscopy and > makes it difficult to culture these bugs. This theory might also > explain subtypes of our ASD subpopulation who have abnormal > behaviors, such as head banging or agitation, that seem to be gut > pain related, yet again have negative studies. The third subset that > this seems relevant for is the group of children that have recurrent > strep infections, OCD, perseverative, or repetitive behaviors who get > worse in the spring and fall, yet may not test positive for strep. > > Why do so many of our ASD kids have persistent dysbiosis? This is my > theory. We all know that the quality of our air, water and food is > not ideal and contains numerous toxins and pollutants. Our children > have a genetic susceptibility in their ability to handle this toxic > burden. Research shows us that resistant organisms tend to grow in > toxic, hostile environments, and after numerous rounds of > antibiotics. They maintain their viability by producing a > polysaccharide matrix that protects them from the hostile environment > in which they are trying to survive. This extracellular matrix is > called biofilm. Our normal flora also produce a natural biofilm, but > resistant organisms produce their own biofilm which then takes over, > preventing the normal flora from flourishing. Experiments done in > vitro show that this polysaccharide matrix is negatively charged, and > that it is held together by positively charged ions such as Ca, Mg, > and Fe. Iron seems to play a big role in how these bacteria evade > the immune system. Further work on VRSA/MRSA and pseudomonas > biofilms in vitro indicate that this biofilm may be penetrated by > using a combination of EDTA and an antibiotic; the studies used > Vancomycin for Staph and Gentamicin for Pseudomonas. > > The protocol that my staff and I developed was presented in its > infancy at the October 2007 Think Tank. The Defeat Autism Now Think > Tank is usually a forum where ideas are presented for discussion and > further research. This protocol was not discussed in great detail > (15 minutes was allotted for this discussion), and it was not meant > for wide distribution at this time. However, Dr. Bradstreet > presented it in his talk on New Advancements and clinicians and > patients from all over the world are now asking for our protocol. > > However, let me start with a few caveats. First of all, this is > brand new. We have used this approach on about 60 patients. The > first two were 's and Sonja's children - one with ASD/self > injurious behavior and one with colitis, no ASD. Both initial > patients are doing well. However, this treatment has to be > individualized for each patient's unique constitution and ability to > handle both die-off and detox type reactions. From our other > patients we are seeing a variety of responses from decreased > hyperactivity and stimming, to increased agitation, to no response. > Of course we may have a few bumps along our journey to recovery. The > big bumps with this approach are related to awakening the immune > system to these organisms which it has not been recognizing. The > body finally sees the bacteria or the candida that has been there > creating other types of havoc all along. Acutely, patients may > experience vomiting, diarrhea, high temps. Rashes may appear, > especially if the die off is sudden. The other theoretical issue is > that the biofilm may be holding on to toxic metals such as aluminum > and lead. As this toxic biofilm degrades heavy metals may be > released into the gastrointestinal tract for excretion. Our protocol > was developed to address this possibility. > > I urge all of you to have patience and wait for us to gather more > data on this approach so that you are presented with the safest, most > effective protocol. Remember, your doctor should implement this > approach gradually with the unique needs of your child in mind. > Because of the possibility for negative side effects, and the need to > closely monitor the patients, and the possible use of > pharmaceuticals, this treatment plan should be implemented only with > the help of your physician. > > > > True Health Gut Biofilm Protocol™ > > Step One: Lysis and Detachment of the Polysaccharide Matrix > (empty stomach, 30-60 min prior to Step 2) > -Use of specific enzymes. (these are being refined and developed, as > the enzymes we have available at this moment are not ideal) > -Use of a chelator that can grab hold of minerals in the Matrix. (if > not implemented appropriately this may cause mineral depletion in the > body - do not attempt chelation without proper medical supervision) > > Step Two: Target the Microbe > - Consider using antibiotics, herbals, or homeopathics. (our office > has had extensive experience with all three modalities, and have > found that the choice " depends upon the kid " . We are also researching > a fourth modality that looks quite promising for eradicating these > pesty organisms. > > Step Three: Clean Up > (This is the most crucial of all the steps. DO NOT SKIP!!! Give 1-2 > hrs after Step 2 if possible or at night) > -Here we use anything that can bind up the matrix (mucus), by > products of die off, and potential metals in the gut. > Products include activated charcoal, alginate, clays, algaes, > zeolites,.... we like pectin the best. Sometimes we use all of the > above. > > Other important factors > -Probiotics, of course. > -Anti-inflammatory agents such as EFA's, antioxidants, curcumin... > -Natural fermented foods such as kefir, kombucha... > -Healthful, non toxic foods (hormone- free, antibiotic-free, organic) > > This is a short-term treatment plan, we are using it for about 2-3 > months. > > This protocol is still being developed and is not fully defined. We > have only been using this for about 6 months in a specific subgroup > of our patients. Remember, our ultimate goal is to restore the normal > flora and the normal biofilm. This takes time and the process is > slow. It took years for some our patients to reach this point, it > may take time to reverse. > > With hope for a better future for our kids and grandkids, > > Dr. Anju Usman > Medical Director > True Health Medical Center > 603 E. Diehl Rd. Suite 135 > Naperville, Illinois Hope that helps, Debbie > Hi Christy, > > Welcome. Do you have a DAN! doctor? A DAN! doctor would probably be your best choice to treat PANDAS. Tonsillectomy is one treatment option. For some children, the strep lies in their tonsils. Does your child have enlarged tonsils? That can be an indication. Other treatment options include low dose maintenance antibiotics and IVIG. > > Pamela > > > > > > > -------------------------------------------------------------------- ---------- > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release Date: 6/4/2008 7:10 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I know there was a thread about this last week or the week before, but I'm still a little confused. 's DAN! tested him for PANDAS...said it wasn't a problem. but the imbalances in his gut listed strep. So did my other son's and so did mine. Christel...I think you thought that they could. what would I do about it? OLE? How much? my kids are 3.5 and almost 6. about 40 and 50 lbs. we're getting ready to start brainchild yeast protocol. with candex, cell food, biocidin, oregon grape extract, garlic. will any of that help with strep? Thanks, Kari > > Hi Christy, > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > probably be your best choice to treat PANDAS. Tonsillectomy is one > treatment option. For some children, the strep lies in their > tonsils. Does your child have enlarged tonsils? That can be an > indication. Other treatment options include low dose maintenance > antibiotics and IVIG. > > > > Pamela > > > > > > > > ------------------------------------------------------------------- > ------- > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > ------------------------------------------------------------------- > ----------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > 6/5/2008 10:07 AM > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 we are using L. acidophilus and culturelle. the other thing we were using back when he had the testing done was off the shelf at the health food store. i checked it. no strep strains. and I don't know what test she did to rule out PANDAS...i'll try to remember to ask the next time we have an appointment with her, but it won't be for months, i'm sure. kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 we are using L. acidophilus and culturelle. the other thing we were using back when he had the testing done was off the shelf at the health food store. i checked it. no strep strains. and I don't know what test she did to rule out PANDAS...i'll try to remember to ask the next time we have an appointment with her, but it won't be for months, i'm sure. kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 we are using L. acidophilus and culturelle. the other thing we were using back when he had the testing done was off the shelf at the health food store. i checked it. no strep strains. and I don't know what test she did to rule out PANDAS...i'll try to remember to ask the next time we have an appointment with her, but it won't be for months, i'm sure. kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I see OCD behaviors. with , they change every few months. we've done trains, roller coasters, planets, now we're on to time and temperature. I'm sure i'm forgetting a few. it's not totally out of control like i've seen other people do, but i know it's not right. my little guy was OBSESSED with basketball for over a year. (maybe that'll come back to help us someday...he can still drain some pretty cool shots for a 3 year-old!) now...mowing grass and parking cars. oh...and license plates. he gets SO distracted in parking lots i know all kids have interests. but these guys seem overboard to me. Kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I see OCD behaviors. with , they change every few months. we've done trains, roller coasters, planets, now we're on to time and temperature. I'm sure i'm forgetting a few. it's not totally out of control like i've seen other people do, but i know it's not right. my little guy was OBSESSED with basketball for over a year. (maybe that'll come back to help us someday...he can still drain some pretty cool shots for a 3 year-old!) now...mowing grass and parking cars. oh...and license plates. he gets SO distracted in parking lots i know all kids have interests. but these guys seem overboard to me. Kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I see OCD behaviors. with , they change every few months. we've done trains, roller coasters, planets, now we're on to time and temperature. I'm sure i'm forgetting a few. it's not totally out of control like i've seen other people do, but i know it's not right. my little guy was OBSESSED with basketball for over a year. (maybe that'll come back to help us someday...he can still drain some pretty cool shots for a 3 year-old!) now...mowing grass and parking cars. oh...and license plates. he gets SO distracted in parking lots i know all kids have interests. but these guys seem overboard to me. Kari > > > Hi Christy, > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > treatment option. For some children, the strep lies in their > > tonsils. Does your child have enlarged tonsils? That can be an > > indication. Other treatment options include low dose maintenance > > antibiotics and IVIG. > > > > > > Pamela > > > > > > > > > > > > ---------------------------------------------------------- > > ------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > ----------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG. > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > 6/5/2008 10:07 AM > > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 My boys' involvement with the fixation of the month is tough to distract them from. but not impossible. we went through the alphabet thing back when ryan was 2-3. had to draw it over and over. if I had a pen in my hand, i had to be writing the alphabet. He would say " A " and we knew...get busy writing or there'd be a fit. With Carson, same thing, but with drawing hoops (see previous post about basketball obsession). then you'd have to draw a basketball, football, soccer ball and baseball. you should have seen my driveway in the summer...people had to think we were insane. hoops and letters everywhere. as many as we could fit in. i have notebooks filled with this crap. that's all they wanted. but it slowly faded for each of them. I'm glad ryan writes on his own now. now ryan has a few things he thinks about too much...currently time and temp and math. we have a display in our van and he watches it like a hawk...announces every change. and the math...I should keep count someday how many addition/subtraction problems he asks me. and carson busily watches out the car window looking for any car with the same make/model as mine, my husband's, his grandfathers', or my friend's. announces it every time. Is this what they call perseveration of a topic? or is it just weird interests for a 3.5 year old and an almost 6 year old? Each fixation usually sticks around for 4-6 months. until a new fixation takes the place of the old. I know kids have interests. but I feel so annoyed by these. I do wonder if i'm reading too much into it at times. at other times, ugh...i've actually started to tell ryan he's spending too much time thinking about time/temp/math. i'm going to have to ask his speech teacher what she thinks. thanks for the help! Kari > > > > Hi Christy, > > > > > > > > Welcome. Do you have a DAN! doctor? A DAN! doctor would > > > probably be your best choice to treat PANDAS. Tonsillectomy is one > > > treatment option. For some children, the strep lies in their > > > tonsils. Does your child have enlarged tonsils? That can be an > > > indication. Other treatment options include low dose maintenance > > > antibiotics and IVIG. > > > > > > > > Pamela > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > ------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG. > > > > Version: 8.0.100 / Virus Database: 269.24.6/1482 - Release > > > Date: 6/4/2008 7:10 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > ----------- > > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG. > > > > Version: 8.0.100 / Virus Database: 270.0.0/1485 - Release Date: > > > 6/5/2008 10:07 AM > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG. > > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: > 6/6/2008 8:01 AM > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG. > Version: 8.0.100 / Virus Database: 270.0.0/1487 - Release Date: 6/6/2008 8:01 AM > Quote Link to comment Share on other sites More sharing options...
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