Leaky Gut and scoffing doctors

[LNN]

Boy develops autoimmne disease. Doctor puts him on a chemo drug. Mom has a "feeling" that this isn't right. Talks to a "kook" about complimentary medicine. Guess who was right?

 

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&_r=0

 

Data on diet and supplements are lacking, at least partly because they are hard to get. It’s hard to design a great study around something with so many variables, like the food we eat. Pharmaceuticals, on the other hand, lend themselves easily to randomized, double-blind, placebo-controlled clinical trials. Plus, anti-arthritic drugs are great for business. Together, the top two sellers, Humira and Enbrel, took in more than $8 billion in 2012, not including December, according to IMS Health, a health care technology and information company. At the N.I.H., the complementary-and-alternative center’s budget is 0.4 percent of the entire N.I.H. pie.

[ThinkGutBacteria]

Boy develops autoimmne disease. Doctor puts him on a chemo drug. Mom has a "feeling" that this isn't right. Talks to a "kook" about complimentary medicine. Guess who was right?

 

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&_r=0

 

Data on diet and supplements are lacking, at least partly because they are hard to get. It’s hard to design a great study around something with so many variables, like the food we eat. Pharmaceuticals, on the other hand, lend themselves easily to randomized, double-blind, placebo-controlled clinical trials. Plus, anti-arthritic drugs are great for business. Together, the top two sellers, Humira and Enbrel, took in more than $8 billion in 2012, not including December, according to IMS Health, a health care technology and information company. At the N.I.H., the complementary-and-alternative center’s budget is 0.4 percent of the entire N.I.H. pie.

 

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well.

 

As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible.

[philamom]

Boy develops autoimmne disease. Doctor puts him on a chemo drug. Mom has a "feeling" that this isn't right. Talks to a "kook" about complimentary medicine. Guess who was right?

 

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=1&_r=0

 

Data on diet and supplements are lacking, at least partly because they are hard to get. It’s hard to design a great study around something with so many variables, like the food we eat. Pharmaceuticals, on the other hand, lend themselves easily to randomized, double-blind, placebo-controlled clinical trials. Plus, anti-arthritic drugs are great for business. Together, the top two sellers, Humira and Enbrel, took in more than $8 billion in 2012, not including December, according to IMS Health, a health care technology and information company. At the N.I.H., the complementary-and-alternative center’s budget is 0.4 percent of the entire N.I.H. pie.

 

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well.

 

As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible.

What brand probiotics/prebiotics do you use? thx

[ChrissyD]

Interesting article. Thanks for sharing.

[LNN]

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well.

 

As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible.

 

ThinkGut - do you have a Pandas child? Is s/he on antibiotics?

[ThinkGutBacteria]

Like I'm saying, it's all about the gut bacteria. Or, in the words of Dr. Alessio Fasano at the U. Maryland School of Medicine in Baltimore, "There is growing evidence that increased intestinal permeability plays a pathogenic role in various autoimmune diseases including Crohn's and type 1 diabetes." We use prebiotics like galactooligosaccharides (GOS) and fructooligosaccharides to fix the intestinal tight junctions in our house. They seem to work well.

 

As for the NIH budget, I recall the drug Celebrex earning Pfizer the same amount of money in one year as the NIH's National Cancer Institute's entire annual budget (4 billion dollars). The funny thing was, the drug worked no better than advil, motrin, aleve, or any other pain drug already on the market. Nor were side effects appreciably different. Incredible.

 

ThinkGut - do you have a Pandas child? Is s/he on antibiotics?

 

I have two girls, the oldest is DD7 PITAND (not MD-diagnosed but TOTALLY PITAND). She's a sweet, smart, beautiful child, but oh man, what a difference between her and her non-PITAND (fingers-crossed) sister. We're doctor-shopping at the moment. Been through a couple already, of course.

 

As for supplements, we sneak in multivitamin, B-complex, liquid vitamin D (2,000 IU/day), Baby Jarro-Dophilus w/FOS and GOS (one-quarter to one-half tsp/day), FOS powder (approx. 5 grams/day), glutamine when I can, and melatonin at night (which works very well). we also try to provide magnesium-rich foods like almonds, but she, of course, doesn't eat much. I'm thinking butyrate would help immensely, but I need to do more research to make sure it's safe.

 

Her tonsillectomy/adenoidectomy last year helped SO much, but a recent respiratory infection led to a relapse. Although still present when she gets sick, her tantrums/anxiety/sleep disturbances/tics/regression are nothing like before her operation, so we're managing with supplements for now. (I don't like the idea of long-term Abs.) Still, I live in fear of serious relapse or worsening. My wife has an autoimmune condition and it's all so overwhelming. I probably don't have to tell you guys about that though...

Edited February 3, 2013 by ThinkGutBacteria

[LNN]

ThinkGut - in addition to gut bacteria, you may also want to read up on the subject of methylation. It too plays a huge role in mental and physical health and since you're managing this disease without antibiotics, you may find that methylation information helps you compliment the gains you're trying to hold with diet. Here are two good intro sites: http://mthfr.net/ and http://www.mthfrsupport.com/index.html

 

Here are some videos:

http://www.renewashoe.com/medical/

http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-

[ThinkGutBacteria]

ThinkGut - in addition to gut bacteria, you may also want to read up on the subject of methylation. It too plays a huge role in mental and physical health and since you're managing this disease without antibiotics, you may find that methylation information helps you compliment the gains you're trying to hold with diet. Here are two good intro sites: http://mthfr.net/ and http://www.mthfrsupport.com/index.html

 

Here are some videos:

http://www.renewashoe.com/medical/

http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-

 

Thanks! I see this topic quite frequently on this board but have yet to figure out its link to PITAND. I'm assuming people with heterozygous or homozygous mutation are more susceptible to PANS/PITAND?

[LNN]

Thanks! I see this topic quite frequently on this board but have yet to figure out its link to PITAND. I'm assuming people with heterozygous or homozygous mutation are more susceptible to PANS/PITAND?

 

It isn't that having an MTHFR causes or makes you more susceptible to Pans. Something like 45% of the population has a MTHFR mutation as well as additional mutations along the methylation pathway. So it's not a cause. It's rather a compounding factor. Even if you get infection under control, methylation effects neurotransmitter production, energy and detox systems. So if you have Pans and you also have methylation issues, then your child may be struggling to get back to 100% even with antibiotics. The infection was the tipping point, but health systems may have been shaky beforehand and now you might need to do more than just clear infection to get to 100%.

 

So for my kids, they struggle to make enough serotonin and dopamine and struggle to get rid of toxins (from dying bacteria and environmental like allergies/mold). They take antibiotics but they also take supplements to improve the body's ability to do these other things. Finding methylation roadblocks is sometimes the key to getting back the kid you know is trapped. So some of us have tested for MTHFR and when we treat it with supplements, we see behavioral issues improve considerably. A few of us have gone a step further and are testing additional genes that play a role in methylation. Dr Amy Yasko does a panel of tests and the company 23andMe does a similar panel.

[hugs2day]

Does treating the MTHFR defect help the ocd? I ask because I read that serratonin is made in the gut and my son has gi issues ...significant gi issues. I notice the health of his gut effects the health of his brain (serratonin effects causes the OCD) and I didn't notice this until I started treating PANS. The OCD is pretty significant now (rituals like sammy had) and it didn't used to be but the flares for PANS are fewer.

 

confusing.