Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 , I'm not sure where you live but there are slim pickings for docs that understand that GI+immune system are connected. Our GI doc at UCLA strongly deferred to our immuno for IVIG to solve my daughter's GI infections. I'm so sorry that I don't have a solution for you but please know that your concerns are justified. From what you said, it seems like you are worried about merely giving him steroid when his immune system is already compromised. What does your immuno think? Will he/she start IVIG if titers come back reduced? Take care Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ Any ideas? I'm not sure where to go from here with my son's issues. Perhaps some of you might have ideas. He has low immunoglobins. Last test showed IgA around 5, IgM around 20 and IgG around 300. A pneumoccocal challenge showed a good initial response and we are about to do another blood draw for 3month titers. My son had a colonoscopy recently due to chronic diarrhea and it showed GI inflammation of the small intestine and colon. He also has mildly elevated liver enzymes. The only therapy being offered right now is the GI doctor putting him on prednisone for the inflammation. It seems like all of his problems are connected, but the immunologist and the GI doctor aren't really working together. Any thoughts? Thanks! (this is a tired exclamation point) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 Hi! I have no idea about the IVIG. I'm wondering if the GI inflammation can result in low immunoglobins? Or is it vice versa - the immune dysfunction is causing the inflammation? His albumin level is normal so it doesn't seem like he's protein spilling. He's had diarrhea pretty much since birth, so how does a kid get infantile inflammatory bowel? It seems like it's becoming systemic too since his liver enzymes are elevated. I'm sure the prednisone will help, but, yes, what about the upper respiratory infections he gets? I remember someone mentioning a GI doc from Mt. Sinai in NY who spoke at the last IDF conference on bowel issues in immune disease. I'm wondering if he would make sense for my son? ________________________________ From: " dietdoc@... " <dietdoc@...> Sent: Thu, October 7, 2010 3:13:19 PM Subject: Re: Any ideas? , I'm not sure where you live but there are slim pickings for docs that understand that GI+immune system are connected. Our GI doc at UCLA strongly deferred to our immuno for IVIG to solve my daughter's GI infections. I'm so sorry that I don't have a solution for you but please know that your concerns are justified. From what you said, it seems like you are worried about merely giving him steroid when his immune system is already compromised. What does your immuno think? Will he/she start IVIG if titers come back reduced? Take care Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ Any ideas? I'm not sure where to go from here with my son's issues. Perhaps some of you might have ideas. He has low immunoglobins. Last test showed IgA around 5, IgM around 20 and IgG around 300. A pneumoccocal challenge showed a good initial response and we are about to do another blood draw for 3month titers. My son had a colonoscopy recently due to chronic diarrhea and it showed GI inflammation of the small intestine and colon. He also has mildly elevated liver enzymes. The only therapy being offered right now is the GI doctor putting him on prednisone for the inflammation. It seems like all of his problems are connected, but the immunologist and the GI doctor aren't really working together. Any thoughts? Thanks! (this is a tired exclamation point) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 You are RIGHT ON in your thought process. Yes the immune deficiency causes the gut to become inflamed and my son had the same problem from birth as well as lots of bleeding over the next four years when he finally got on Gamma. I would be careful about the prednisone without a bigger plan. A short course of about a week is OK but over that it can be a problem with out other immune supports. (opinion) I would be looking for an GI with Immune focus. BARBIE ________________________________ From: <stacy171@...> Sent: Fri, October 8, 2010 10:32:58 AM Subject: Re: Any ideas? Hi! I have no idea about the IVIG. I'm wondering if the GI inflammation can result in low immunoglobins? Or is it vice versa - the immune dysfunction is causing the inflammation? His albumin level is normal so it doesn't seem like he's protein spilling. He's had diarrhea pretty much since birth, so how does a kid get infantile inflammatory bowel? It seems like it's becoming systemic too since his liver enzymes are elevated. I'm sure the prednisone will help, but, yes, what about the upper respiratory infections he gets? I remember someone mentioning a GI doc from Mt. Sinai in NY who spoke at the last IDF conference on bowel issues in immune disease. I'm wondering if he would make sense for my son? ________________________________ From: " dietdoc@... " <dietdoc@...> Sent: Thu, October 7, 2010 3:13:19 PM Subject: Re: Any ideas? , I'm not sure where you live but there are slim pickings for docs that understand that GI+immune system are connected. Our GI doc at UCLA strongly deferred to our immuno for IVIG to solve my daughter's GI infections. I'm so sorry that I don't have a solution for you but please know that your concerns are justified. From what you said, it seems like you are worried about merely giving him steroid when his immune system is already compromised. What does your immuno think? Will he/she start IVIG if titers come back reduced? Take care Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ Any ideas? I'm not sure where to go from here with my son's issues. Perhaps some of you might have ideas. He has low immunoglobins. Last test showed IgA around 5, IgM around 20 and IgG around 300. A pneumoccocal challenge showed a good initial response and we are about to do another blood draw for 3month titers. My son had a colonoscopy recently due to chronic diarrhea and it showed GI inflammation of the small intestine and colon. He also has mildly elevated liver enzymes. The only therapy being offered right now is the GI doctor putting him on prednisone for the inflammation. It seems like all of his problems are connected, but the immunologist and the GI doctor aren't really working together. Any thoughts? Thanks! (this is a tired exclamation point) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 In many cases its a chicken or the egg situation. But what many, but not all, PIDers find is that the gut improves when the immune system is strengthened. I would be concerned about doing steroid w/ an already supressed immune system. If you could consult w/ someone who can treat GI in view of a low immune system, you'd probably feel better. Maybe parents will chime in on the name of the dr. you're curious about. Hope you get the help you need Mom to dani, 8 cvid Sent from my Sprint® BlackBerry ~~~~~~~~~~~~~~~~~~~~~~ Any ideas? I'm not sure where to go from here with my son's issues. Perhaps some of you might have ideas. He has low immunoglobins. Last test showed IgA around 5, IgM around 20 and IgG around 300. A pneumoccocal challenge showed a good initial response and we are about to do another blood draw for 3month titers. My son had a colonoscopy recently due to chronic diarrhea and it showed GI inflammation of the small intestine and colon. He also has mildly elevated liver enzymes. The only therapy being offered right now is the GI doctor putting him on prednisone for the inflammation. It seems like all of his problems are connected, but the immunologist and the GI doctor aren't really working together. Any thoughts? Thanks! (this is a tired exclamation point) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2010 Report Share Posted October 12, 2010 Lloyd Mayer is the GI at Mt. Sinai. He has spoken at several IDF events including the most recent National Conference. CVID-colitis is a term you might want to put into Pubmed. It is just recently started to be explored. I would not do Prednisone but instead try Entocort. It is a steroid specifically produced to work in the intestine. It has a low incidence of systemic effects. Macey was diagnosed with IBD last year and is now being included in a NIH study looking at IBD in CVID patients. She has been on Entocort for the last 2 years after taking Prednisone for the 2 years before that. Her colonoscopies are being done every year and there is improvement. Our immuno is the lead on Macey's GI care. Good luck. Ursula mom to Macey (15,CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2010 Report Share Posted October 13, 2010 Thank you for the name of the GI doctor. I appreciate it! He kind has a mix of issues. The physical colonoscopy was fine but his biopsies look like this: esophagus - increased intraepithelial lymphocytes stomach - unremarkable smal bowel biopsy - focal active deuodenitis and focal villous blunting terminal ilium - focal acute inflammation and prominent lymphoid aggregates right colon - unremarkable left colon - prominent lymphoid aggregates They had a pathology review board look at it and they didn't give a specific diagnosis other than general inflammation. I'm glad Macey has gotten better on the Entocort. Did she have any bowel damage prior to that? The GI wants to start my son on a prednisone taper than go to Entocort. We'll discuss skipping the prednisone with him. Since we don't have a formal diagnosis yet, the immunologist isn't taking a lead. Kind of frustrating. ________________________________ From: Ursula Holleman <uahollem@...> Sent: Tue, October 12, 2010 6:12:39 PM Subject: Re: Any ideas?  Lloyd Mayer is the GI at Mt. Sinai. He has spoken at several IDF events including the most recent National Conference. CVID-colitis is a term you might want to put into Pubmed. It is just recently started to be explored. I would not do Prednisone but instead try Entocort. It is a steroid specifically produced to work in the intestine. It has a low incidence of systemic effects. Macey was diagnosed with IBD last year and is now being included in a NIH study looking at IBD in CVID patients. She has been on Entocort for the last 2 years after taking Prednisone for the 2 years before that. Her colonoscopies are being done every year and there is improvement. Our immuno is the lead on Macey's GI care. Good luck. Ursula mom to Macey (15,CVID) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2010 Report Share Posted October 13, 2010 the aggregates are very common in PID patients presenting with inflammation on colonoscopy exam. Just our experience but unless you're looking at acute symptoms such as blood in the stool, electrolyte imbalance or malnutrition then I think you'll have time to let the Entocort kick in. Prednisone has such harmful side effects. But if there is a more immediate threat at hand then the Prednisone will knock it out and is you're best rapid bet. She's had some megacolon when she was much younger due to chronic constipation. The pathologist here at Egleston has been working with our immuno to become more familiar with pathology associated with primary immune deficiency. It presents differently than your typical IBD pathology. I'm not sure what part of the country you are in but the more slides he has to look at then the more experience he can get. CVID-colitis is a new entity and still needs backup to show why it is different than Crohn's. Ursula mom of Macey (15,CVID) On Wed, Oct 13, 2010 at 2:09 PM, <stacy171@...> wrote: > > > Thank you for the name of the GI doctor. I appreciate it! He kind has a > mix of > issues. The physical colonoscopy was fine but his biopsies look like this: > > esophagus - increased intraepithelial lymphocytes > stomach - unremarkable > smal bowel biopsy - focal active deuodenitis and focal villous blunting > terminal ilium - focal acute inflammation and prominent lymphoid aggregates > right colon - unremarkable > left colon - prominent lymphoid aggregates > > They had a pathology review board look at it and they didn't give a > specific > diagnosis other than general inflammation. I'm glad Macey has gotten > better on > the Entocort. Did she have any bowel damage prior to that? The GI wants > to > start my son on a prednisone taper than go to Entocort. We'll discuss > skipping > the prednisone with him. Since we don't have a formal diagnosis yet, the > immunologist isn't taking a lead. Kind of frustrating. > > > > ________________________________ > From: Ursula Holleman <uahollem@... <uahollem%40gmail.com>> > <%40> > Sent: Tue, October 12, 2010 6:12:39 PM > Subject: Re: Any ideas? > > > > Lloyd Mayer is the GI at Mt. Sinai. He has spoken at several IDF events > including the most recent National Conference. > > CVID-colitis is a term you might want to put into Pubmed. It is just > recently started to be explored. > > I would not do Prednisone but instead try Entocort. It is a steroid > specifically produced to work in the intestine. It has a low incidence of > systemic effects. Macey was diagnosed with IBD last year and is now being > included in a NIH study looking at IBD in CVID patients. She has been on > Entocort for the last 2 years after taking Prednisone for the 2 years > before > that. Her colonoscopies are being done every year and there is improvement. > > Our immuno is the lead on Macey's GI care. > > Good luck. > > Ursula > mom to Macey (15,CVID) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 Hello all, I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? Thanks guys, Reno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 Research SAD--Seasonal Affective Disorder on Google. I have it too where basically once it is dark, all I want to do is stay home and hibernate until morning. The only thing that really works is lighting up your environment. Good luck if you come across anything better, but that would be my guess of what is wrong. > > Hello all, > > I've noticed that since the recent change from daylight saving time to standard > time my mood and general alertness have also changed. Whether it is related to > less sunlight hours who knows. > > I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. > > My diet has been clean and I go to the gym 4 times per week. have been using my > machine everyday making soups, smoothies etc. > > > Any ideas or comments of what else I can do? Are there any good smoothie > recipes I should try? > > Thanks guys, > > > Reno > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 I take 5HTP for depression - works better than any pharmaceutical antidepressant I've ever been on. I LOVE it. My mom has SAD (Seasonal Affective Disorder) and I'm pretty sure that the most recommended treatment is the SAD lights. Here is the link for the Google Search for SAD lights: http://www.google.com/search?client=safari & rls=en & q=sad+lights & ie=UTF-8 & oe=UTF-8 I've heard these work really well. Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))>< Any ideas? Hello all, I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? Thanks guys, Reno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2010 Report Share Posted December 9, 2010 I was going to recommend "sad" lights, but our dear Lea Ann beat me to it! You can find these types of lights MUCH cheaper in places like Marshalls, TJMaxx, Tuesday Morning, and BigLots. I use them as indoor grow lights for my veggies, and I am always happy, so they must work! lolFrom: Lea Ann Savage <lsavage@...>Subject: Re: Any ideas? Date: Thursday, December 9, 2010, 8:20 PM I take 5HTP for depression - works better than any pharmaceutical antidepressant I've ever been on. I LOVE it. My mom has SAD (Seasonal Affective Disorder) and I'm pretty sure that the most recommended treatment is the SAD lights. Here is the link for the Google Search for SAD lights: http://www.google.com/search?client=safari & rls=en & q=sad+lights & ie=UTF-8 & oe=UTF-8 I've heard these work really well. Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))>< Any ideas? Hello all, I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? Thanks guys, Reno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 what is HTP? thanks Any ideas? Hello all, I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? Thanks guys, Reno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Hi Lea AnnWhat brand of 5HTP do you take? I'm on antidepressants (Cymbalta), and while they help I just know they must have nasties in them, so I'm keen to get off them. Kind regards JaneOn 10/12/2010, at 11:50 AM, Lea Ann Savage wrote: I take 5HTP for depression - works better than any pharmaceutical antidepressant I've ever been on. I LOVE it. My mom has SAD (Seasonal Affective Disorder) and I'm pretty sure that the most recommended treatment is the SAD lights. Here is the link for the Google Search for SAD lights: http://www.google.com/search?client=safari & rls=en & q=sad+lights & ie=UTF-8 & oe=UTF-8 I've heard these work really well. Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))>< Any ideas? Hello all, I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? Thanks guys, Reno Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 This is the SAD light my sister has; they are very well made and the price seems pretty reasonable. http://www.sadlight.com/nlt-SADelite.htm. (They are made in Canada; I guess Canadians really have a need for them!) (Also, you should never buy an SAD light that is a Blue Light; they are really bad for you!) However, you can also buy " Full Spectrum " Light Bulbs for about $10 to put in your desk lamp, etc. so that you can be exposed to " natural daylight " all day long. I have a " Blues Busters " light in my desk lamp http://www.bluesbuster.com/, but you can also get them shaped liked the long fluorescent tube bulbs that are used in offices, etc. I have used these Vita Lites in the past: http://www.naturallighting.com/web/shop.php when I worked in an office. Most health food stores carry some sort of Full Spectrum light bulbs. If you can get outside, if it is at all sunny, for about 20 minutes or so between the hours of 11 to 3 and NOT WEAR Sun Glasses, you may find this helpful, too. Dr. Mercola had a great article about Insomnia recently; http://articles.mercola.com/sites/articles/archive/2010/11/27/dr-naiman-on-sleep\ ..aspx. If you scroll about 2/3rds of the way down the article you will see a paragraph " Why You Need to Sleep in Complete Darkness, " and it addresses the fact that we get so much blue light from our computers, TVs etc. and that Melatonin supplementation may be a good thing for just about everybody in the winter, even if you don't have insomnia. Well, I really went on there, didn't I!!!(I have been doing a lot research on light lately!) Lea Ann, would you mind sharing with us what brand and dosage of 5-HTTP you use? thanks, Joyce > > I take 5HTP for depression - works better than any pharmaceutical antidepressant I've ever been on. I LOVE it. > > My mom has SAD (Seasonal Affective Disorder) and I'm pretty sure that the most recommended treatment is the SAD lights. Here is the link for the Google Search for SAD lights: http://www.google.com/search?client=safari & rls=en & q=sad+lights & ie=UTF-8 & oe=UTF-8 > > I've heard these work really well. > > Blessings, > Lea Ann Savage > Satellite Beach, FL > (321) 773-7088 (home) > (321-961-9219 (cell) > www.VitamixLady.com > www..com > <))>< > Any ideas? > > > > > Hello all, > > I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. > > I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. > > My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. > > Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? > > Thanks guys, > > > Reno > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 http://www.mayoclinic.com/health/seasonal-affective-disorder-treatment/DN00013 > > > > I take 5HTP for depression - works better than any pharmaceutical antidepressant I've ever been on. I LOVE it. > > > > My mom has SAD (Seasonal Affective Disorder) and I'm pretty sure that the most recommended treatment is the SAD lights. Here is the link for the Google Search for SAD lights: http://www.google.com/search?client=safari & rls=en & q=sad+lights & ie=UTF-8 & oe=UTF-8 > > > > I've heard these work really well. > > > > Blessings, > > Lea Ann Savage > > Satellite Beach, FL > > (321) 773-7088 (home) > > (321-961-9219 (cell) > > www.VitamixLady.com > > www..com > > <))>< > > Any ideas? > > > > > > > > > > Hello all, > > > > I've noticed that since the recent change from daylight saving time to standard time my mood and general alertness have also changed. Whether it is related to less sunlight hours who knows. > > > > I supplement my vitamin D intake with upwards of 4000 I.U.'s daily. > > > > My diet has been clean and I go to the gym 4 times per week. have been using my machine everyday making soups, smoothies etc. > > > > Any ideas or comments of what else I can do? Are there any good smoothie recipes I should try? > > > > Thanks guys, > > > > > > Reno > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 ahhh ok tyvm :)On Fri, Dec 10, 2010 at 4:12 PM, Lea Ann Savage <lsavage@...> wrote: D3 was mentioned in another post and since they are all related (SAD lights, 5HTP, and D3 all help depression) I think the reply just got attached to the wrong email. If you check the message list I think the topic was brought up under the subject line, " New controversy about Vitamin D3 dosing " ... Hope this helps :-) Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)www.VitamixLady.comwww..com <))>< Any ideas?>>>> Hello all,>> I've noticed that since the recent change from daylight saving time> to standard time my mood and general alertness have also changed.> Whether it is related to less sunlight hours who knows.>> I supplement my vitamin D intake with upwards of 4000 I.U.'s daily.>> My diet has been clean and I go to the gym 4 times per week. have> been using my machine everyday making soups, smoothies etc.>> Any ideas or comments of what else I can do? Are there any good> smoothie recipes I should try?>> Thanks guys,>>> Reno------------------------------------ Quote Link to comment Share on other sites More sharing options...
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