Thank you both so much for all the links! I like to be well informed and it can be difficult to find good information on CVID.

You are most welcome! The docs don't always have the time to help us with these things/concerns. so any ideas and information is so welcome from those of us who do have docs that give us some good links. That is where I got my link that I shared. at home
Are you getting IVIG or IVSQ? I am just learning how to self infuse.

Beckettjt

The GI system is the largest immune system of the entire body. So, naturally GI problems exist. I had to have my entire colon removed, now I have early cancer cells in my esophagus. All my physicians believe it is due to the CVID and multiple other autoimmune diseases I have.

Beckettjt--I am currently on 30 grams of IVIG every 4 weeks... As much as I dislike going to the hospital to get my treatments--my hospital puts me in the surgical day unit, so I often get forgotten when they have a lot of surgery patients that need prepping--because the 4 hours treatments ends up being between 6 and 8 hours =/ I know it's not the nurses fault but it's a little ridiculous at times and they are not happy when you make comments about it let me tell you! But after 2 hours of sitting in a hospital chair and not to even having an IV in my arm... Sorry, but it gets to me sometimes and I have definitely started considering that at home treatment method because of it.

How are you finding the at home treatments? I have been struggling with the whole 'accepting' I am chronically sick thing... It's just too much some days and I kind of like that my treatments are not at home in that regard. Also, hate needles. Not enough for it to be a problem but enough that I am not sure I could poke myself with one :P

I found some relief!!!!

A woman whose kids I tutor has Chrohns and she gave me some pro-biotic pills called Tu Zen to try. She said these things literally saved her life--I was pretty sceptical--but I caved and bought them last night.

Today= no diarrhea and my first almost normal bowel movement in the last 3 months. I nearly cried. I have only taken one pill--you are supposed to take 1-2 everyday for about 4-6 weeks for the full effect--and it calmed my bowels down that much.

I did some reading on Tu Zen and it is has specific bacteria cultures that can survive in your gut until they reach your intestines. This stuff is crazy expensive... But I plan on trying to make yogurt cultured with it! Then I can have a happy tummy and bank account!

Here is a link on it:

http://www.tuzen.ca/irritable-bowel-syndrome.asp


I will let you guys know how the progress goes... but this is the second time Tu Zen has given me almost complete relief and I don't think it is a coincidence.

I will also let you know how my yogurt adventures go! Why break your bank account when you can make it at home? :P

I was diagnosed with Celiac disease prior to my CVID diagnosis. My daughter has also been diagnosed with Celiac. Personally I think Celiac is not being looked at often enough. One out of every 133 people have celiac disease. The longer it goes undiagnosed the worse the consequences.

Beckettjt--I am currently on 30 grams of IVIG every 4 weeks... As much as I dislike going to the hospital to get my treatments--my hospital puts me in the surgical day unit, so I often get forgotten when they have a lot of surgery patients that need prepping--because the 4 hours treatments ends up being between 6 and 8 hours =/ I know it's not the nurses fault but it's a little ridiculous at times and they are not happy when you make comments about it let me tell you! But after 2 hours of sitting in a hospital chair and not to even having an IV in my arm... Sorry, but it gets to me sometimes and I have definitely started considering that at home treatment method because of it.

How are you finding the at home treatments? I have been struggling with the whole 'accepting' I am chronically sick thing... It's just too much some days and I kind of like that my treatments are not at home in that regard. Also, hate needles. Not enough for it to be a problem but enough that I am not sure I could poke myself with one :P
[ Reply to this Post ]
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Hi P,
My IVIG amount and I was out of thee in three hours! Someone is not doinghis/her job and if you are being forgotetn, maybe it is time for you to forget them and move on! I got tired of incompetance and laziness a couple times when I was there in infusion. I asked my doctor and he got me on home fusions, I do it myself and was at first totally grossed out at having to poke meself! But my desire to get out of infusion, take care of my self my own way , with good instruction, has been liberating! After awhile, I got to be able to do it wth out ANY pain! I was worried about that same thing you mentioned; poking yourself! (I thought-Ick.!!! ) But I am very glad to not have to go to the clinic for that treatment anymore. I have to poke in four places and then tape it in place. Then I read or get cooking dsone or go out i te gaden adwath birds or do some basketry.
Tell me, P,
How long have you had this CVID ? I have had the sypmtoms for 15 years when menopasue started. GPs were CLUELESS and even though they saw my immunity numbers, they IGNORED them. I do not get it. I asked several times about the low numbers and they just blew me off. This is California, supposedly pretty progressive here with medicine. Finally an astute young woman in Infectius Diseases said that I have to go to te immunologist IMMEDIATELY!!! Thanks to her, I was not left to rot by the road!
I eally understand how you are feeling!! I is wful and the days when things are bad, they really are. It affects your whole body and moods. You know, I feel you can get out of the hospital doing this infusion, the better. There are so many diseases that can be a big problem. If you are at an infusion centre only, that is different. Not so many sickies there. If you are interested in the home infusion, rely heavily on that nurse and tell her your fears and she will help you get over it. I did and was terrified and she was great!!
Hope this helps!
Sorry took me so long to answer but I was gone over the weekend!
Beckettjt

HI P,
Beckettjt here again!
I mean to say, "My IVIG amount was the same..." somehow my keyboard is not working well.
Sorry! :/

Countr,
How reliable are celiac tests, do you know?
I have had that test hree tims and all negative. My gut is pretty awful and have been wondering.
I was off wheat and al gluten for quite a while and no change. So maybe I do no have it anyway!
Beckettjt

Hi, this is for ELC87
I am curious about the issue that drove you to try the Zu Ten. Have you had this for over a decade and are you under 50 years and do you have CVID? I am over 50, have been ill with this for 15 years and have CVID- or so they say. Two opinions in different clinics and both the same. My immunity test results seem to indicate that.
I tried every 'probiotic' on the market for the last 15 years and NONE has worked. what is any different with Zu Ten? The fact that I have no or defective B cells and a gut that will not stop, nothing will stay in there. I have even thought of

Oh, I was able to see/read that you do have CVID and if that ZuTen is helping, you are very lucky! Good for you!

Nothing works for me lots except psyllium which adds bulk and keeps me from having watery issues. elimination of dairy and wheat did not work either. *sigh* :/
beckettjt

I should take 4 hours for mine because I have a lowered infusion rate to help reduce the side effects. But the nurses standing around gossiping is what really pisses me off. The downside of mostly free healthcare in Canada lol.

Beckettjt--> My naturopathic doctor (not homeopathic--those are the bullshit doctors) told me the only way to test for food allergies properly is to be put on a special elimination diet. But I do not know if that is the case for celiacs, but with CVID many people can minic celiacs--which might be why your test results came back clean. There is celiacs and then there are gluten allergies which are two different things. Celiacs And the reason why many people are now developing gluten allergies is because of the type of wheat we are cosuming predominantly--genetically modified and only particular strains of wheat.

If you think you have problems with gluten or food allergies, I strongly recommend going on an elimination diet through your doctor. They take about six weeks and you are not allowed to gluten, preservatives, sugar, acidic fruit (lemons, tomatoes, oranges,etc), caffeine, alcohol, vinegar, red meat (beef, pork, or lamb), dairy (milk, cheesy yogurt) pasta, white rices (brown rice is fine), and the list goes on.

You stop eating all of those foods for 6 weeks and then slowly start incorporating one item back in every week when it is time. It takes a lot of will power but it calmed my gut right down... And I discovered I have a soy milk intolerance while on it... but all other foods were fine! I should do it again though because that was 2 years ago and before my CVID diagnosis.

What drove me to Tu Zen was my friend with Chrohns. She SWEARS by it. Actually said it saved her life and I am on day three of a happy tummy. My cousin is a naturopathic doctor, so I am going to see if she can order it for me wholesale. BUT the bacteria culture in it is called Lactobacillius Plantarun v299 and it is actually traditionally used to ferment foods, specifically grains.

After having done a lot of reading, many people might actually have gluten/grain intolerances due to how we eat it now. Traditionally grains were always fermented before eating because it breaks down the proteins into more digestible forms. So I am going to try making oatmeal yogurt and try adding a portion of the Tu Zen capsule to it. I might also look into fermenting my flours before using them in breads... I do a lot of cooking, I love it. And it's probably the only reason why I am not a bag of bones right now.

But seriously, try the Tu Zen... it is worth a try! I am going to talk to my doctor, but I do not think I would have seen such an improvement in my gut while being on Tu Zen if I had a stomach infection (bacterial or parasitic... and those test results came back negative for both the last time I had them done). From my reading, CVID can present like IBS,Chrohns and Celiacs, and the CVID symptoms are treated the same as those conditions. So perhaps that is why the Tu Zen is working for me so well.

This day 3 and 3 pills in... And to day I had such a good poop ^_^ I am sure none of you wanted to know that, but I was really stoked! Sweet relief and proper digestion.

Oh and to answer your question about how long I've had CVID. I am 25 now and had adultish onset of CVID. I started getting sick a lot in my teens but no chronic bouts of infections until I was around 16 or 17, but I was not diagnosed until I was 23.

I have been on IVIG treatments for... 20 months now and my chronic infections have abated for the most part. As long as I stay away from sick people and try to keep my anxiety levels in check. University did a great job of giving me really bad panic attacks but it's been months since I switched to online courses. And got a dog, that helped too :)

Information on Tu Zen and why it works:

Lactobacillius Platnarum is one 500 hundred varieties of bacteria that live in your gut. BUT it is special because most varieties of gut bacteria don't make it past the inhospitable acid in your stomach, so by the time it reaches your intestines, the bacterium have died. SO yogurt, yes good for you, but mostly benefits your stomach and not your intestines. IBS, Chrohns and Celiacs--all have to do with your intestines and can create bacterial imbalances.

Lactobacullius Plantarum can actually thrive in your gut right through to your small intestine, so it actually repopulates your gut with beneficial bacteria growth. Most bacteria cultures in regular probiotic pills do not have this particular strain of Lactobacillius in them, nor in the quanitity that Tu Zen provides.

Tu Zen= 2 BILLION live lactobacillius plantarum v299 culutres per pill. According to their website this probiotic is specifically designed for people who suffer from IBS and can help relieve up to 95% of symptoms. Also, I live in Canada which might be why you have not heard of it. It could have a different name or not be offered outside of Canada. BUT even if it is not, you do know the specific type of probiotic in it that makes it effective--there might be something exactly the same offered but under a different name.

Anyways, for those of you curious about this stuff, here are some informational links:

Tu Zen's Website:
http://www.tuzen.ca/irritable-bowel-syndrome.asp

Reconditioning the Mucosal Lining of the Gut:
(This is a real medical research journal)
http://www.ncbi.nlm.nih.gov/pubmed/8577022

Lactobacillius Plantarum:
(Another medical journal)
http://www.ncbi.nlm.nih.gov/pubmed/11157345


Prebiotics:
http://en.wikipedia.org/wiki/Prebiotic_(nutrition)#Sources


So, there is medical research that supports Tu Zen's claims about its product and explains why it is effective.

And here is a recipe to try! I know fermented oatmeal sounds disgusting, but by fermenting they mean soaking the oats in yogurt overnight. I want to try adding part of a capsule of Tu Zen to this and see what happens.

http://www.wholehealthrd.com/fermented-oats/


Yay for knowledge!

Soaking flours before using them to help bread down the wheat and make the wheat more digestible:

http://allergyfreemenuplanners.com/2009/08/18/why-soaking-flours-can-help-you-digest-your-baked-goods/

Phytic acid produced in this process also helps aid in digestion of meats and helps your body absorb nutrients.