JuliaFaith Posted October 23, 2012 Report Share Posted October 23, 2012 Son is still having gut issues 10 weeks after flair. One thing we heard to try is Claritin or Claritin 'D'. Some people have one work and not the other. Maybe this has already been mentioned here. We are trying it starting tonight! Will start with Claritin first because have heard the Claritin D can cause hyperactivity. The others are prescriptions of which have not heard of before: Xifaxan (see if insurance will cover) Vancomycin (2nd choice if insurance will not cover the other one) Anyone tried these before for the gut? Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted October 23, 2012 Report Share Posted October 23, 2012 What is Claritin supposed to do for the gut? My understanding is that its active ingredient (loratadine) is an H1 (Histamine 1 receptor) agonist. Meanwhile, most of the histamine agonists I've heard of with respect to assisting the gut are H2 (Histamine 2 receptor) agonists, such as Pepcid and Tagamet. We use Pepcid and have seen good results, not just with respect to the gut but also other inflammatory/autoimmune issues (eczema) and even behavior. Link to comment Share on other sites More sharing options...
Fixit Posted October 23, 2012 Report Share Posted October 23, 2012 Son is still having gut issues 10 weeks after flair. One thing we heard to try is Claritin or Claritin 'D'. Some people have one work and not the other. Maybe this has already been mentioned here. We are trying it starting tonight! Will start with Claritin first because have heard the Claritin D can cause hyperactivity. The others are prescriptions of which have not heard of before: Xifaxan (see if insurance will cover) Vancomycin (2nd choice if insurance will not cover the other one) Anyone tried these before for the gut? vanco..if remember right my Dan also orders antifungal with that as vanco stays in the gut. once there is open space any other available organism will try to populate that space.... needless to say alot of probiotics to fill in..alot of pearls too. vanco helped the screeches several times for ds... we may have to go there again...but we are not nearly as bad as we have been in past this time. trying to hold off till necessary. as one thing comes into balance another goes out. got to run myself...but i was looking at some other things that are gut related along the line of clariton... got to find link and will post later after this busy week...if i remember Not sure what aspect of gut you are trying to heal, so that may play a part in it... high acidity, parasites again, mucus, mucosa, vialia(sp) inflamtiaon would obvisouly go with any of these, including food intolereances. But i'm sure you know more about that stuff than i do...just throwing thoughts out there fot others to brain storm. Best wishes. Link to comment Share on other sites More sharing options...
JuliaFaith Posted October 23, 2012 Author Report Share Posted October 23, 2012 What is Claritin supposed to do for the gut? My understanding is that its active ingredient (loratadine) is an H1 (Histamine 1 receptor) agonist. Meanwhile, most of the histamine agonists I've heard of with respect to assisting the gut are H2 (Histamine 2 receptor) agonists, such as Pepcid and Tagamet. We use Pepcid and have seen good results, not just with respect to the gut but also other inflammatory/autoimmune issues (eczema) and even behavior. You have good questions but I do not know the answers. I did read about using the Claritin for inflammation issues when doing the GcMAF injections which we are hoping son can start soon. Maybe someone else on here will have some ideas. Link to comment Share on other sites More sharing options...
SSS Posted October 23, 2012 Report Share Posted October 23, 2012 A quality curcumin/Tumeric supplement, like Enhansa, can really reduce gut inflammation. I've seen it first hand in dd, and I take 1200 mg Enhansa a day. Also like Longvida brand, our old DAN! Dr. recommended that brand. Don't know about the other supps for your purpose, but Vancomycin is a big gun, often pulled out for a bad case of clostrida/c.diff. Also good for Lyme. Link to comment Share on other sites More sharing options...
Fixit Posted October 23, 2012 Report Share Posted October 23, 2012 (edited) We also saw a little improvement with tagament. We may revisit that in the future. I don't want to confuse our strategy at the moment. Here is the link to a sal-free diet/ingredients. But they are also called Guier's (sorry for bold type ...sent to someone else to help me understand, so used large font) I am also interested if anyone has any thoughts on this or can translate better. I've tred to understand the Guaifenesin Connection for more than a month now. Per another mom, they heard that using robitussin, if you can't get pregnant, might help. It thins out the mucus everywhere i guess and lets the little swimmers make it to the egg better. And it did work. So i know of one person that this is evidenced by. GUAI’S USE THAT MEDICINE TO THIN OUT THE MUCOSA???? THIS IS WHAT I READ INTO THIS SITE… SALS ARE A NATURAL PESTICIDE. SO THEY BLOCK THE BUGS FROM EATING THEM…AS THE FRUIT GETS OLDER..RIPENS, THE SALS DETERIOATE AND THE BUGS ARE ABLE TO GET TO THE FRUIT. SO SALS BLOCK (ENZYMES, AMINOS, BACTERIA…I DON’T KNOW…JUST BRAIN STORMING)(RIPE FRUIT HAS LESS SALICYLATES) IN THE GUT THEY ARE BLOCKING ABSORBTION, I GUESS, AND I GUESS WOULD ALSO LEAD TO BAD DIGESTION. BUT ONCE THEY GET TO THE INTESTINES SOMEWHERE, THE SALS ARE LESS POTENT/EFFECTIVE? BUT NOW YOU HAVE BACK UP OR UNBOTTLENECKING OF METHLYIZATION? http://www.psha-inc.com/guai-support/sf/Sal-Free/About_Salicylates.htm#AvoidTheseSynonyms I might try this at some point. Especially if someone can give me some real theory behind this or had a personal experience using this protocal. This is about the umpteenth time I've come fibromyalgia in searching for ds' puzzle piece. Edited October 23, 2012 by Fixit Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted October 23, 2012 Report Share Posted October 23, 2012 Fixit -- We used guafinesin regularly when DS was very young (2-3) for thinning out mucus to help his ears drain and put a dint in the constant ear infections. It did help, but one issue with it is that it tastes pretty nasty . . . very bitter. And thus the taste is difficult to disguise in juice, etc. Frankly wasn't aware that it might help the gut as it did his head and upper respiratory, but maybe that was an added perk. Learning more and more about how a med "targeted" for one area of the body may actually be beneficial beyond . . . I will add, though, that NAC has mucous-thinning properties, as well, and in capsule form, it comes tasteless to boot. So this is our current strategy and it does seem to have multiple positive impacts for our DS, though I realize some kids do less well with it for whatever reason. Hadn't given any thought as to whether or not the NAC might actually be working within DS's gut in addition to his respiratory tract and brain, though it makes sense that it would since it's well-recognized as a detox for acetamenophen overdose, etc. I need to read up on that some more . . . . Thanks for the kick-start! Link to comment Share on other sites More sharing options...
mompaisley Posted October 23, 2012 Report Share Posted October 23, 2012 Where does one buy Enhansa? Link to comment Share on other sites More sharing options...
rowingmom Posted October 23, 2012 Report Share Posted October 23, 2012 (edited) Just googling around and I think I found that antihistamines are used by people with POTS and mast cell diseases to help regulate mast cell production of histamine (allergic response) and decrease inflammation. It helps regulate mast cell production in mucous membranes (of which the gut has plenty). Does it help downregulate mast cell production in an inflammed brain? IDK. This link about mast cell researcher Dr Thdoharides has been posted before, but I will link again: http://www.mastcellmaster.com/ There was some earlier discussion on the lyme board about luteolin/rutin/quercetin also being mast cell stabalizers. Vancomycin is used to treat C. diff cystic forms in the gut. It is a very strong antibiotic also used by some LLMDs to kill the cyst form of lyme. Xifaxan is a antibiotic related to rifampin. Lots of probiotics needed with these abx. Hopefully your doctor will check for C diff infection before starting vancomycin. Here is a link to a forum using different antihistamines to address POTS/mast cell disregulation and some discussion on the results: http://forums.dinet.org/index.php?/topic/17315-when-to-take-clariton-and-zantac/ Edited October 23, 2012 by rowingmom Link to comment Share on other sites More sharing options...
LNN Posted October 23, 2012 Report Share Posted October 23, 2012 What sort of gut issues are you trying to fix? Appetite? Food refusal? nausea? reflux? diarrhea? behaviors? yeast? do you suspect leaky gut? I see some talk about mucus thinning but I'm not sure I follow why this is a good thing for gut issues. Mucus protects the stomach and esophagus linings from stomach acid. So if you're dealing with excess acid, thinning mucus seems contradictory? Likewise, I'm all about mast cell control but that's based on my DDs tendency to struggle with histamines for a large part of the year. This seems to effect her gut. So things like quercetin, luteolin and rutin help DDs symptoms, including her nausea and GERD. Enhansa didn't make a dent because it didn't address the source of her inflammation (histamines). So it was probably like bailing water with a teaspoon. Pepcid helps but not as much as quercetin - for her. I think there can be numerous causes of "gut" issues, so you may need to zero in on more specific symptoms to know which path might help. In addition to the histamine angle and mucus angle, you may also look into things like ginger or licorice http://drholly.typepad.com/licorice/ This article explains that there can be both pros and cons to using something, depending on your specific situation. Tryptophan and calming supplements could also be something to explore. Both the brain and gut can benefit from the calming neurotransmitters like 5-htp, tryptophan, gaba, taurine. Theanine can also help for some people. So can diet. But it can be an expensive experiment unless you can narrow the causes/triggers. Link to comment Share on other sites More sharing options...
Fixit Posted October 23, 2012 Report Share Posted October 23, 2012 I keep coming back to this article by amy yasko for many reasons. There is alot more info than just about NAC I can't say nac helped.(it was just the form N-Acetyl Cysteine) and i did add Vit C. DS is blood type O and MULTIPLE strep infections. NOt to say that maybe it might help at some later point, once other aspects of the gut are healed/being assisted. http://gordonresearch.com/articles_autism/role_of_excitotoxins.html Blood Type/Streptococcal Infection The A-B-O system for blood typing is dependent on the blood group antigens that are expressed on the outer surface of an individuals' red blood cells. Those with blood type A have NAC-gal (n-acetyl galactosamine) as the predominant blood group antigen, and those with type B have galactose as their primary antigen. Those with blood type O have fucose as a predominant antigenic determinant on their red blood cells. In addition, to a lesser extent the NAC-glu (n-acetyl glucosamine) antigen would be accessible to the immune system in those with blood type O due to the limited carbohydrate antigen on the surface of type O red blood cells. It is necessary for the body to discern the difference between self and non-self, and to prevent the immune system from attacking self. As a consequence of this "tolerance" to self, those with blood type O would have a higher tolerance to NAC-glu, and would not have as high a natural tolerance to NAC-gal and galactose as would those with blood types of A or B. Similarly, those with blood type A would have a higher "self-tolerance" to NAC-gal. The major carbohydrate antigenic determinants on the surface of the streptococcus bacteria are predominantly NAC-glu and NAC-gal. As a consequence, persons with blood type O and type A would have an initial greater natural tolerance to infection from streptococcal bacteria. After repeated exposure to the streptococcus bacterium, an immune response would finally be mounted, and targeted against the antigenic determinants on the bacterium. When this happens the immune cells of the body inadvertently launch an autoimmune attack upon body tissue with antigenic determinants that are similar to the antigen on the surface of the streptococci. This reaction to the NAC-glu and NAC-gal on the surface of the streptococci could also lead to an autoimmune type reaction against the NAC-glu/gal in the GI tract. This process has been recognized since the middle 1980's and is known as molecular mimicry. The excessive shedding of NAC-glu and NAC-gal, otherwise referred to as GAG has been described and well characterized by others. Suffice to say that the shedding of GAGs in the GI tract is enhanced with immune activation and inflammation. Following infection and/or inflammation, the body would need to replace GAGs that have been shed, as well as to sulfate them. If there is a sulfur deficiency in the body, this would lead to undersulfated GAGs in the GI tract along with the deficiency of other sulfur related proteins in the body. Nitric oxide has been shown to inhibit sulfation of GAGs. High levels of nitric oxide are a consequence of excitotoxin damage. Generally, bacteria elicit a B cell mediated immune response, and viruses elicit a T cell mediated immune response. However, a large number of extracellular toxins are elaborated by streptoccocci, all of which have the ability to nonspecifically stimulate T cells. Therefore once an immune response is mounted against streptococcus it would involve both T cell and B cells resulting in a major inflammatory reaction. One particular extracellular enzyme produced by streptococcus is a sulfhydryl protease. This protease is capable of cleaving sulfhydryl groups and may lead to a deficiency of available sulfur containing moieties in the body following streptococcal infection. These sulfhydryl groups are involved in the binding and elimination of heavy metals in the body. Streptococcal infection is also known to lead to elevated levels of the inflammatory cytokines NFKB and TNF alpha. In addition, the level of TNF alpha is inversely correlated with glutathione levels. Consequently, high TNF alpha levels as a result of streptococcal infection would result in decreases in glutathione levels. Streptococcal infection is also associated with a wide variety of behavioral disturbances. High levels of TNF alpha (as a result of streptococcal infection) have been implicated in Tourettes syndrome, facial tics, obsessive compulsive behavior, and schizophrenia. On a related note, lithium (the most popular prescription drug for treating the mood swings associated with manic, or bipolar depression) has been demonstrated to act by protecting the brain from over stimulation by glutamate. Excessive levels of glutamate have also been implicated in drug craving and in addictive behavior. Consequently, the net results of streptococcal infection are depletion of Vitamin K levels, decreased glutathione levels, decreased sulfhydryl protein levels, over stimulation of the immune system, increased TNF alpha levels (which trigger OCD, facial tics, etc.), potential autoimmune responses and inflammatory reactions against the GAGs in the GI tract. Link to comment Share on other sites More sharing options...
Fixit Posted October 23, 2012 Report Share Posted October 23, 2012 What sort of gut issues are you trying to fix? Appetite? Food refusal? nausea? reflux? diarrhea? behaviors? yeast? do you suspect leaky gut? I see some talk about mucus thinning but I'm not sure I follow why this is a good thing for gut issues. Mucus protects the stomach and esophagus linings from stomach acid. So if you're dealing with excess acid, thinning mucus seems contradictory? Likewise, I'm all about mast cell control but that's based on my DDs tendency to struggle with histamines for a large part of the year. This seems to effect her gut. So things like quercetin, luteolin and rutin help DDs symptoms, including her nausea and GERD. Enhansa didn't make a dent because it didn't address the source of her inflammation (histamines). So it was probably like bailing water with a teaspoon. Pepcid helps but not as much as quercetin - for her. I think there can be numerous causes of "gut" issues, so you may need to zero in on more specific symptoms to know which path might help. In addition to the histamine angle and mucus angle, you may also look into things like ginger or licorice http://drholly.typepad.com/licorice/ This article explains that there can be both pros and cons to using something, depending on your specific situation. Tryptophan and calming supplements could also be something to explore. Both the brain and gut can benefit from the calming neurotransmitters like 5-htp, tryptophan, gaba, taurine. Theanine can also help for some people. So can diet. But it can be an expensive experiment unless you can narrow the causes/triggers. This is my ds also. But i wonder even if ds isn't "snotty", though i think i hear him sucking it in once in a while if you know what i mean(yuck)(i also think it gets stuck and doesn't drain) wouldn't it seem logical that that there is a mucos build up in the stomach/intestines. I have no idea if i am right. Just thinking it through. Then other stuff have a breeding ground. Or maybe not breeding, but since there is a mucos, other aspects of the gut are not running to their full potential? I agree, in that i am concerned about stripping the gut of things it needs. I'm sure the abx's are not helping in that regard. So i wonder if keeping some mucos is beneficial in that area. We are doing much better since avoiding MOST Salicylates. Ginger would concern me on that aspect(currently anyway). I think that is whay i saw no benefit with Quercitin(sals). Theanine/gaba seemed stimulatory also..go figure. But may retry as we are sal free and slowly (per your lead LLM, thanks) attempting in our way a kpu protocal. Like Taurine! I will have to look at some of the other things you mentioned here. DS has NO GUT issues, so to speak. But just reitterating, sal free seems to be doing something, and when he vomits he is ticless, and he does very well on one particular parasite cleanse that also treats yeast and detoxes. So...SOMETHING is going on with the gut. I just cant figure it out. I am not trying to steal the thread. Just posting other questions in how i see things relating to my ds and our experience. Honestly, I truly don't understand nearly the amount i really need too. Always interested in any thoughts or info you have!!! Link to comment Share on other sites More sharing options...
LNN Posted October 23, 2012 Report Share Posted October 23, 2012 Fixit - my DD gets more runny than snotty and NAC was horrible for her. But that was before we addressed methylation, so maybe that had a role in her poor response. It's so easy to get things tangled up until you don't know which end is up. I've tried so many things that have worked well for others but not for us. And vice versa. I can see where mucus would be a bad thing if you're dealing with biofilms. But reducing mucus would be bad if you're dealing with high stomach acidity. So that's why I really wanted to emphasize the need to zero in on things and not just address "gut issues". Kinda like a novice asking "how do you deal with mental illness?" and all of us would jump in and ask "what kind of mental illness?" because the way to address anxiety vs bipolar vs depression vs adhd vs ocd vs tics - all very different animals. I think the gut needs the same kind of distinctions. You can have allergies effect the eosinophils/esophagus, have a problem with the stomach valve not closing (GERD/dyspepsia), stomach irritation (ulcers/high or low acidity), problems with bile production (methylation/blockage/autoimmune), inflammation of the intestines, yeast, parasites, leaky gut, celiacs/allergies effecting the cillia, neurotransmitters effecting how often your bowels contract - and each issue could suggest different treatments. If I've made one mistake over the years, it's been in trying too many things at once and being impatient. If watching salycic is helping, my advice would be to change nothing else and only pursue the KPU treatment for the next 2 months. Only then would I reassess and go from there. JMHO Link to comment Share on other sites More sharing options...
JuliaFaith Posted October 24, 2012 Author Report Share Posted October 24, 2012 Good info. In this thread. What gut issues are we looking at is a good question. Son has nausea off and on (day by day) for over 2 yrs; stomache pain after eating now after latest flair (same thing with initial flair); yeast issues in private area that has been treated in various ways for months now and is still ongoing. When he first got sick an endoscopy was done and all they found was inflammation in small intestine. The mentioned abx will be 2 weeks each. Dr. was also curious that dh has been traveling and one of the abx treats'travelers diarhea'. Also wondered about our well water since the company has had a few findings of bacteria that could be bad for immune compromised individuals. Son is taking ketotifen which is suppose to help heal the gut but have never had much improvement if any on it. Thanks for all the great ideas. Sorry took so long to get back on. Link to comment Share on other sites More sharing options...
sf_mom Posted October 24, 2012 Report Share Posted October 24, 2012 (edited) I have used Xifaxin before and I found it easier on my system over Vanco. I was also wondering if you are using L-Glutamine for lower intestine at all. Most of the Glutamine in our body is produced from the lower intestine. "Glutamine is one of the most important nutrients for your intestines. It has the ability to 'repair a leaky gut' by maintaining the structural integrity of the bowels" Here is a decent link: http://www.antiaging-advisor.com/L-Glutamine-benefits.html Edited October 24, 2012 by SF Mom Link to comment Share on other sites More sharing options...
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