Update on my inquiry to EnteroLab.
This message has been sent by EnteroLab related to the information you have requested.
Your Question: I am very much wanting some of the tests you provide, but I have been on IVIG every 14 days for 9 years and many of my past antibody tests results are skewed because of this. Do you think this IVIG would skew results from your type of tests ? Kind Regards, Rebecca
Response: Dear Rebecca, I apologize for the delay in my reply, however, this is something I would like to confirm with Dr. Kenneth Fine, who is currently traveling. I will be in touch with him soon and I can call you early next week. Thank you, Kathy Carreon EnteroLab Customer Service
Feeling Lost & Confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Ya Gabes ! Thanks for checking in.
You will regret asking me how I am doing...
Well I am having worse D then I have ever had, why I have no idea unless and it is that darn soy in the TPN. I have now been on TPN for just 2 weeks so it stands to reason it is now making me flare even more.
The GERD is worse then ever. I get this wave of GERD and about 5 minutes later I have 3-4 trips to the loo. Somehow these two things are connected.
I am only eating basimati rice, nothing added to it, everything I eat is a major problem with making tons of wd. I tried my gulten free quinoa ( which, Tex I looked and it is kosher) that causes more wd too. I am drinking just plain water and hating it, so I am not drinking much, which maybe another reason why the GERD is so bad.
I have been at a complete loss at how to help myself. I am still taking in no dairy. I am afraid the Cholestyramine maybe also part of why my GERD is so bad, after I take that stuff in my gut is killing me with burning and refluxing... but really I am clueless as to why I am worse. It's got to be the TPN. Which next week I get to have 2 days without the soy in the TPN, and I am going to tell the doctor how great I feel without the soy ( whether I do or don't feel better) so I can have it taken out completely.
A lot of suffering going on here with all the levels of gut issues. I haven't left my house in 6 months now ...due to the WD. But I am enjoying sleeping and social networking !
Are you doing your car show tomorrow? I hope we get to see some pics when you do !
Hugs, Rebecca
You will regret asking me how I am doing...
Well I am having worse D then I have ever had, why I have no idea unless and it is that darn soy in the TPN. I have now been on TPN for just 2 weeks so it stands to reason it is now making me flare even more.
The GERD is worse then ever. I get this wave of GERD and about 5 minutes later I have 3-4 trips to the loo. Somehow these two things are connected.
I am only eating basimati rice, nothing added to it, everything I eat is a major problem with making tons of wd. I tried my gulten free quinoa ( which, Tex I looked and it is kosher) that causes more wd too. I am drinking just plain water and hating it, so I am not drinking much, which maybe another reason why the GERD is so bad.
I have been at a complete loss at how to help myself. I am still taking in no dairy. I am afraid the Cholestyramine maybe also part of why my GERD is so bad, after I take that stuff in my gut is killing me with burning and refluxing... but really I am clueless as to why I am worse. It's got to be the TPN. Which next week I get to have 2 days without the soy in the TPN, and I am going to tell the doctor how great I feel without the soy ( whether I do or don't feel better) so I can have it taken out completely.
A lot of suffering going on here with all the levels of gut issues. I haven't left my house in 6 months now ...due to the WD. But I am enjoying sleeping and social networking !
Are you doing your car show tomorrow? I hope we get to see some pics when you do !
Hugs, Rebecca
Maybe this for water Gabes, I know plain is best but I am not interested and not drinking at all....so maybe just a couple drops of this added to water? ONLY 3 ingred !! Ingredients: Water, Organic Stevia Leaf Extract, Natural Peach Mango Flavor Blend, Citric Acid < that Citric Acid is probably really bad....
https://www.swansonvitamins.com/wisdom- ... fgodDVIM9A
https://www.swansonvitamins.com/wisdom- ... fgodDVIM9A
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
No regrets with asking.... sorry to hear that things are still challenging...
One thing that happens for many MC'ers, is once they give up a major trigger, like gluten, then something else becomes the major trigger, for you this might be the soy.
I would maybe think about passing on the rice and quinoa. If you really want some carb then Maybe try some welll cooked sweet potato?
You are doing grand, you have to process a lot of info these past couple of weeks. And it will take a few weeks to get the magnesium levels and Vit D3 up, so they can provide benefit to reducing inflammation for you, so for now you are in a 'meantime' type stage, treading water, keeping calm.
Car show is not for another week... luckily, as we are in the midst of a major rain event today. Some of the bridges in my area are closed due to flooding. We had close to 3 inches of rain overnight.
The classic Chevy's are not too good in the rain! So they are safely tucked up in their garages with their protective covers on...
will definitely share photos after the event...
One thing that happens for many MC'ers, is once they give up a major trigger, like gluten, then something else becomes the major trigger, for you this might be the soy.
I would maybe think about passing on the rice and quinoa. If you really want some carb then Maybe try some welll cooked sweet potato?
You are doing grand, you have to process a lot of info these past couple of weeks. And it will take a few weeks to get the magnesium levels and Vit D3 up, so they can provide benefit to reducing inflammation for you, so for now you are in a 'meantime' type stage, treading water, keeping calm.
Car show is not for another week... luckily, as we are in the midst of a major rain event today. Some of the bridges in my area are closed due to flooding. We had close to 3 inches of rain overnight.
The classic Chevy's are not too good in the rain! So they are safely tucked up in their garages with their protective covers on...
will definitely share photos after the event...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I am glad that car show is another week away, rain is not good for those babies !! I am anxious to see the cars !
Yes that is an excellent idea on the sweet potato, which I do love, thank you - that is exactly what I will nibble on. Of course I am not hungry, but when on a feeding tube it is important to take in tastes of food , it can really mess with your head if you don't . You feel very deprived. If I can get the flare managed I can maybe go back to a liquid nutrition, so I can get off the feeding tube.
What is different in my situation from most in here is I have gastroparisis and my gut doesn't work, my throat doesn't work.
( What they call diffuss dysmotility of the entire GI tract. )
Ha - my bowel didn't work at all and now with MC it is really working !
My bowel was the worst abnormal test they had ever seen. I had no feeling and couldn't expel the balloon. I had no feeling at the highest setting on what I call the cattle prod they stick up you, they raised up the setting to 180 and they have never had anyone go past 60-70 I think they said. That's why I was loving the WD for first 2 months, I was so thrilled with all the action... well be careful what you ask for right ...lol
Before MC, I would work very hard at slipping in calories, with sour cream, mayo, avo, salmon, tuna, pasta, chicken bits or shrimp with alfredo, yogurt, eggs, butter, some fruits, some cereal with milk - stuff like that kept me at 98 pounds, Stuff like that I could swallow, my throat doesn't swallow food and it doesn't move it down, while still way too thin at 97 pounds I was able to get off my feeding tube.
Now with no dairy in my diet, I am in big trouble. So I guess I am going to have to figure out what works for me and maybe not try to copy exactly what I read in here. I know I may see improvements in the motility with the increased mag, and Vit D, but I am not sure I will ever eat meats. But who knows ....I just might !! Mag is powerful stuff.
(Meat is the one thing that doesn't work with my GI problems and nor can I tolerate any fiber, no salads, no on most fruits, breads or nuts. I could do just a spoonful of brown rice. Now I would never go near that. )
So onward I go and with all you good people helping I will improve !
I am absolutely following your great advice and taking my magnesium and Vit D3- and keeping calm.
Thank You !
Yes that is an excellent idea on the sweet potato, which I do love, thank you - that is exactly what I will nibble on. Of course I am not hungry, but when on a feeding tube it is important to take in tastes of food , it can really mess with your head if you don't . You feel very deprived. If I can get the flare managed I can maybe go back to a liquid nutrition, so I can get off the feeding tube.
What is different in my situation from most in here is I have gastroparisis and my gut doesn't work, my throat doesn't work.
( What they call diffuss dysmotility of the entire GI tract. )
Ha - my bowel didn't work at all and now with MC it is really working !
My bowel was the worst abnormal test they had ever seen. I had no feeling and couldn't expel the balloon. I had no feeling at the highest setting on what I call the cattle prod they stick up you, they raised up the setting to 180 and they have never had anyone go past 60-70 I think they said. That's why I was loving the WD for first 2 months, I was so thrilled with all the action... well be careful what you ask for right ...lol
Before MC, I would work very hard at slipping in calories, with sour cream, mayo, avo, salmon, tuna, pasta, chicken bits or shrimp with alfredo, yogurt, eggs, butter, some fruits, some cereal with milk - stuff like that kept me at 98 pounds, Stuff like that I could swallow, my throat doesn't swallow food and it doesn't move it down, while still way too thin at 97 pounds I was able to get off my feeding tube.
Now with no dairy in my diet, I am in big trouble. So I guess I am going to have to figure out what works for me and maybe not try to copy exactly what I read in here. I know I may see improvements in the motility with the increased mag, and Vit D, but I am not sure I will ever eat meats. But who knows ....I just might !! Mag is powerful stuff.
(Meat is the one thing that doesn't work with my GI problems and nor can I tolerate any fiber, no salads, no on most fruits, breads or nuts. I could do just a spoonful of brown rice. Now I would never go near that. )
So onward I go and with all you good people helping I will improve !
I am absolutely following your great advice and taking my magnesium and Vit D3- and keeping calm.
Thank You !
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
no you arent... as once we resolve the excess inflammation and get your cells a bit happier with Vit D3, you will absorb nutrients better and the weight will return. trusting the process and not looking at the scales, not overthinking is best approach for nowI would work very hard at slipping in calories, with sour cream, mayo, avo, salmon, tuna, pasta, chicken bits or shrimp with alfredo, yogurt, eggs, butter, some fruits, some cereal with milk - stuff like that kept me at 98 pounds, Stuff like that I could swallow, my throat doesn't swallow food and it doesn't move it down, while still way too thin at 97 pounds I was able to get off my feeding tube.
Now with no dairy in my diet, I am in big trouble.
you may be interested to know that constipation can be part of the MC journey for some - most of my MC journey has been alternating constipation and MC mud. only recently (in the past ?9 months or so) i see near normal poop. first time in over 15 years for me.
The atmosphere at the festival is amazing, 400 (or more) Pre 1975 cars, lots of people glammed up in 50's attire, hair etc, lots of bands, dance demonstrations, fashion parade competitions etc, people travel from interstate to attend. s
http://www.kurrikurrinostalgiafestival. ... o-gallery/
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks Gabes, I will trust your thoughtful words !
GRrr they make me weigh everyday for making up the TPN... so upsets me.
I read on here that people have C and not the wd or they have a bit of both. So thrilled in the last 9 months you are seeing norman !! Wow 15 years of struggling with all this, gulp.... I am never whining again.
Oh my gosh that car show sounds so fun, I love the getting dressed in the right period pieces. I love hats and cat eye sunglasses !
~ what fun, I just played the video.... so cool and I would have a blast taking photo's.
Was your red car shown in the video, I saw a few red ones?
Looks very exciting !
Hugs, Rebecca
Happy St. Patrick's day everyone !
May you have warm words on a cold evening, a full moon on a dark night and a smooth road all the way to your door -Irish Blessing
GRrr they make me weigh everyday for making up the TPN... so upsets me.
I read on here that people have C and not the wd or they have a bit of both. So thrilled in the last 9 months you are seeing norman !! Wow 15 years of struggling with all this, gulp.... I am never whining again.
Oh my gosh that car show sounds so fun, I love the getting dressed in the right period pieces. I love hats and cat eye sunglasses !
~ what fun, I just played the video.... so cool and I would have a blast taking photo's.
Was your red car shown in the video, I saw a few red ones?
Looks very exciting !
Hugs, Rebecca
Happy St. Patrick's day everyone !
May you have warm words on a cold evening, a full moon on a dark night and a smooth road all the way to your door -Irish Blessing
Hi Tex !tex wrote:Rebecca,
Did your symptoms worsen after you began using the cholestyramine?
Tex
Yes my symptoms did get worse after starting a low dose of the cholestyramine and when TPN came on board, which has soy. So hard to know which is causing me the problems, probably both. I stopped the cholestyramine yesterday, I think it helped with the WD somewhat though.
I spent the night in hospital last night, seems I have another 'condition' called Trigeminal neuralgia (TN).
Doc was almost 100% positive that is what I have, OMG it is the most intense pain I have ever had in my life. ( started 3 days ago and last night at 2 in the morning it woke me up with the worst pain of my life)
I cried when he said I had to have opiates to manage this level of pain, I just hate those drugs but I didn't fight him because the pain was so severe. They will order a MRI and then hopefully put me on something to help with this nerve pain. I hope to only take it for a while.
I vomited all night and had WD ( too many trips to the loo to count)
So now my stomach is really bad from too many opiates and anti- nauseas drug & stress.
Anyway the cholestyramine makes me very very nauseas and lots of heartburn.
Thanks Tex for inquiring .. Oh BTW, my blood magnesium level is 2.2 mg/dL
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rebecca
sorry that you are experiencing that level of pain ... agree with Deb that I am super impressed with your attitude.
be cautious of the medication options offered for nerve pain, things like Lyrica have tended to cause way more issues than benefit for majority of people who take it, and it is highly addictive.
I dont wish ongoing pain for anyone but am cautious when the treatment can end up being worse than the original issue,
sorry that you are experiencing that level of pain ... agree with Deb that I am super impressed with your attitude.
be cautious of the medication options offered for nerve pain, things like Lyrica have tended to cause way more issues than benefit for majority of people who take it, and it is highly addictive.
I dont wish ongoing pain for anyone but am cautious when the treatment can end up being worse than the original issue,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Awww thanks Deb, that is so thought of you to write. The support means so much- thank you.
I am having moments of complete break down as I just didn't need this.
I feel badly I haven't been able to move around this board and offer support to others. I am anxious to give to others but it is a little difficult at this time.
I will in time reach out and meet you all !
I am having moments of complete break down as I just didn't need this.
I feel badly I haven't been able to move around this board and offer support to others. I am anxious to give to others but it is a little difficult at this time.
I will in time reach out and meet you all !
Thanks Gabes, I have taken a couple of Lyrica in the past for nerve pain in feet, I hate that drug, and I can't stand gabapention. These drugs and me don't do well, but this pain in very intense, like electrical shocks and lightening bolts that just keep coming about 1 min apart. There is no way to live with it.
This is so strange, the whole thing has me numb, wishing that numbness would go to my head pain !
This is so strange, the whole thing has me numb, wishing that numbness would go to my head pain !
Rebecca,
I'm also sorry that symptoms have been so tough lately. That magnesium level will do, so that's one less thing to be concerned about.
Thanks for posting an update. I sure hope that things start going your way. You certainly deserve to see some serious improvement.
Tex
I'm also sorry that symptoms have been so tough lately. That magnesium level will do, so that's one less thing to be concerned about.
Thanks for posting an update. I sure hope that things start going your way. You certainly deserve to see some serious improvement.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.