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Chelle

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Reply with quote  #1 
My son's GI says he is not sure what else he can do for my son (14) so he gave us 3 names of supplements to try one at a time. They are more targeted for IBS, my son has more abdominal migraines pain and neasua than vomiting. We ordered Heathers tummy Tammers today, wondered if anyone has tried it?
Other suggestions were IBGUARD (we tried ) and FDGUARD, & Ibergoast.

Anyone had any luck with these? I will post update on if they have helped or not. I seen an oldost for Ibergoast from several years ago.
Thanks

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Chelle
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ginny

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Reply with quote  #2 

I cannot recall but you have tried the CoQ10, LCarnitine and later Vitamin B and Magnesium?

The ones you mention the doctor suggesting are none that I have heard about.  It sounds like changing the flora in his system? 


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ginny CVSA Moderator
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Chelle

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Reply with quote  #3 
Ginny, we do butterbur and trader Joe's CoQ10, we tried lcarnitine from the NOW brand liquid but it did not seem to do anything for him. We haven't done extra Vit B or Magnesium other than what is in his Men's multivitamin. Would we ask his PCP for dosage on those two vitamins. In his multivitamin : Magnesium oxide...**mg and *mg of Mag Citrate and B1 ..**mg B2 ..**mg B3..**MG each
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Chelle
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ginny

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Reply with quote  #4 

For dosages please see the study on the supplements on the CVSA web page.  We cannot post dosages on the Message Board.

Maybe prescription Carnitor might help?  No B until CoQ10 is established.  Magnesium definitely speak with his doctor.  Some forms will speed up his bowels.  Some are more absorbable.  I think the study on the supplements gives the Magnesium dosage.  Most seem to adjust their supplements as needed-- times of stress, they might increase but you cannot increase if there is something like Vitamin E in the supplement.  I don't know if Trader Joes CoQ10 has E added or not. 

The B that seems to be more needed is the Riboflavin and some take a B complex and possibly add Riboflavin while others are ok on the Riboflavin.  

Always discuss with his doctor.  Epic4health and Healthy Origins have staff qualified to discuss CoQ10 with you and Epic4Heath also can discuss Carnitine.  

I have not heard of any of the doctors suggesting a particular brand of vitamin B.  Dr. Boles told me to prevent upset stomaches always establish CoQ10 first.  He also said that B seemed to make the biggest improvement.  This info is a bit old and I am hoping to soon get updated on various topics including the supplements and vitamin B.



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ginny CVSA Moderator
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wynnak

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Reply with quote  #5 
Ginny, Great info, Thanks!

Dr. Boles had told me to only use Trader Joes CoQ10 as it is known to not add fillers as a lot of other companies do. I had another Doctor suggest another website for Vitamins for us since we use so many for Migraine management. But Being able to discuss things with Epic4health and Healthy Origins is a huge benefit, so I recommend that you take advantage of that. One thing that our Doctor absolutely makes sure to drill into us is that B Vitamins MUST be taken with food for best absorption. That your body can only absorb so much at a time.. so we take our B2 (riboflavin) through out the day due to the dosage amount.. WITH FOOD. [smile]

I'm sure what your Doctor is trying for with the Tummy Tamers is due to the study on the Migraine ties and the Microbiome of Migraine Sufferers. First line of defense is to have them try a probiotic or prebiotic. Then they will attempt to have them alter their diet to the FODMAPS diet. Hard to do for these kids (or adults) that can hardly eat anyway. I have heard one person that huge a wonderful experience with changing to the FODMAPS diet.. lessened the abdominal pain quite a bit, and spaced the episodes out. But she was still having CVS. But was happy with the reduction in everything. It does take about 6 weeks on the committed diet plan to see any results. I'd love to hear if you get your son to try that. Let us know if Tummy Tamers does have an affect. Always looking for or at things that help, Right?  Thanks!
 

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Blynda
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Chelle

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Reply with quote  #6 
I will have to go back and reread all the supplements study and bring it to one one of our Dr's about adding in vit B.
Trader Joe's has 2 CoQ10 one has extra Vit E and the other doesn't. He has been on CoQ10 for a couple years, but no one has done a test to my knowledge about how he is absorbing it or his levels. Which Dr would be best to ask to have that done, GI, Neuro or PCP?

THANKS for your help and support. .

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Chelle
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ginny

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Reply with quote  #7 
I think any of the doctors can run the test and my memory is that Dr. Boles does test the levels.  I don't recall any or many of our CVS kids or adults having low levels of coQ10 to start with.  I also don't recall anyone being too high in coQ10 upon testing after taking it for a time. I would be very curious about his levels once he is tested.

Good to know about Traders Joes brand not having E.  When we first started to look into the supplements, our information was that US "E" is usually derived from soy and many with CVS don't do very well with soy.  Healthy Origins suspends with olive oil and Tischon form (Epic4health and other sites) has product with and without E.

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ginny CVSA Moderator
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Chelle

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Reply with quote  #8 
The study on the supplements on the CVSA is that the one that talks about CoQ10 and L-C?   Or is there another one?

When we have done blood test in the past the only thing that has popped up is low Vit D.  

Tks


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Chelle
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ginny

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Reply with quote  #9 
Yes, it is the study under the Research Tab on the CVSA main page.  It is an Anecdotal Study Amitriptyline and Supplements.  I am going to email you the entire study. The web site has an abbreviated report.
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ginny CVSA Moderator
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rdean

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Reply with quote  #10 
Hi.  I tried Heather's tummy tamers and IB guard with my son.   Neither hurt him, but neither were the magic bullet either.  My son's story is long, but basically he had vomiting intermittently non stop nausea, and non stop stomach cramping.  He missed 8th grade and was home schooled due to this.  He had diarrhea also.  We tried many, many things.  What has helped him the most is a magnesium IBS product and an allergy supplement to keep down histamine.  I honestly think my son actually had chronic constipation which caused break through diarrhea.  He was being treated for diarrhea, which made everything worse.  You would think the magnesium would make the diarrhea worse, but actually that's what stopped it.  And it also stopped the stomach cramps and nausea.  I never would have believed it, but my son hasn't vomited in a long time and is no longer on nausea meds or meds for his cramps.  Hope that helps.  The tummy tamers and IB guard had no bad side effects that I remember.  Certainly worth a try.  Although my son theoretically had diarrhea, it was hard to pass if that makes any sense.  
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ginny

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Reply with quote  #11 
This is a not uncommon finding.  The dried out constipated stool does not move but more liquid stool can get around that so the person has what seems to be diarrhea when they are actually constipated.  Lots of CVS meds are constipating so this is a viscous circle.  The person becomes nauseated so meds are add which trigger more constipation which triggers more nausea and so on.

A good thread on this to read is Bath Boys information.  He never though his problem was constipation and he was very sick with vomiting and diarrhea.  He is doing mostly well now that he is keeping his bowels regular. 

Dr. V said that CVS patients tend toward rapid gastric emptying except things typically slow down toward a cycle.

Thank you rdean for bringing this issue back to the forefront.


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ginny CVSA Moderator
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kyunschooler

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Reply with quote  #12 
Exactly what is the title of the study you refer to on supplements so I can find it on the CVSA webpage?  And can you email me the full details too?
thanks.

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kyunschooler
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ginny

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Reply with quote  #13 
CoQ10 and Amitriptyline Study, under the Research Tab on the CVSA web page.

I will send you a copy of the full study.   I obtained it by google searching.

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ginny CVSA Moderator
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wynnak

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Reply with quote  #14 
The testing for the CoQ10 Levels were done by our GP or PCP. Basic Blood test. My Son's levels were fine without CoQ10 addition. So if your looking to just get the test done. You may start with your GP.
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Blynda
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Mmwinget

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Reply with quote  #15 
Hi everyone! I am trying to gather info to help my 5 year old daughter. What does the magnesium
Supplement help with?
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