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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17693
Registered: 05-2003
| | Posted on Saturday, May 25, 2013 - 12:10 pm: | 
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Hi AJS
Together you and I can find very interesting nutrition based articles that relate to transplantation.
In the last forum I had up that only lasted three months before the spammers had their way, you had posted
an article from LEF.org about vitamin C and transplantation.
I am trying to find it but cannot look it up. Can you find it for us?
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ajs
Forum Leader
Username: Ajs
Post Number: 771
Registered: 03-2008
| | Posted on Saturday, May 25, 2013 - 01:25 pm: |
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I'm afraid that wasn't me. I definitely recall Jay posting info about Vitamin D. Here is my original post about 5 ways to increase your odds. I Later added Vitamin D and Statins to this list. I will see if I can find both those threads.
http://www.transplantbuddies.org/tbx/messages/5/319577.html?1286139176
Here is the thread that started with Jay's post about Vit. D:
http://www.transplantbuddies.org/tbx/messages/5/329239.html?1290714299
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17697
Registered: 05-2003
| | Posted on Saturday, May 25, 2013 - 04:07 pm: |
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Hi Ajs
I no longer have access to the php forum. If you see the address it directs to transplant friends.
oh well, I thought the person who shared the information about transplant patients and vitamins from Life Extension was you.
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 533
Registered: 01-2007
| | Posted on Saturday, May 25, 2013 - 04:43 pm: |
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I know that there have been studies about Vitamin C causing immunsuppression by maintaining high levels of corticosteroids in the blood. This is especially true under stress.
All I can infer from the study is that if one is taking large doses of C, it might be wise to reduce the amount of steroids, though, I have personally never heard this suggested.
This is from a study at NIH:
Large daily doses of vitamin C resulted in severe lymphocytopenia in stressed mice. A characteristic biochemical expression of stress is an abrupt increase in adrenal corticosteroids in blood plasma which is always preceeded by a release of vitamin C by the adrenals. It is hypothesized that large doses of vitamin C maintain high levels of plasma corticosteroids which in turn may reduce the organism's immune response when stress is present.
http://www.ncbi.nlm.nih.gov/pubmed/3642207
There are not a lot of useful studies of the effects of nutrition and vitamin levels with anti-rejection drugs that I have come across. There is data available on food safety and immunosuppression, however, such as here:
http://www.fda.gov/Food/FoodborneIllnessContaminants/PeopleAtRisk/ucm312570.htm
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17698
Registered: 05-2003
| | Posted on Saturday, May 25, 2013 - 04:56 pm: |
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In the past, I would take 1000 mg of Vitamin C. I believe this is the amount that my body can tolerate. I just might take divided doses.
Do you all take vitamin C? I am not sure if I will continue taking vitamin c.
Thank you JAY
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Jay Lackritz
Forum Leader
Username: Jay_ny
Post Number: 534
Registered: 01-2007
| | Posted on Saturday, May 25, 2013 - 07:17 pm: |
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As far as I know, most transplant centers recommend folic acid, iron, and D for transplant recipients, and they suggest a prenatal vitamin which not only has these nutrients, but also contain a general replacement of essential vitamins that can be depleted from the surgery and the transplant meds.
Most centers do not want their patients taking "mega doses" of vitamins, since they can interfere with our meds, however,
Personally, I am less worried about water soluble vitamins, like Vitamin C, since they are excreted in the urine and do not build up in our systems, but I no longer take the huge doses of vitamins I did before my transplant. One also has to note what nutrients we get from our food intake. For example, one glass of OJ contains about 100mg of Vitamin C, and as the weather gets warmer, we tend to eat more and more fruit.
You should always ask your transplant nutritionist or coordinator before adding anything to your regimen.
Here is an interesting take on it:
http://www.livestrong.com/article/538894-liver-transplant-vitamins/
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ajs
Forum Leader
Username: Ajs
Post Number: 772
Registered: 03-2008
| | Posted on Sunday, May 26, 2013 - 11:24 am: |
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I take one Vitamin C 500mg time-release per day. I forget what I read that got me doing that. I just think the more anti-oxidants, the better. I also started taking Astaxanthin, which is the special anti-oxidant in Krill Oil. There just isn't enough in Krill and there have been a few studies on it. Supposedly it can cross the blood brain barrier, which adds to its effectiveness.
http://www.ncbi.nlm.nih.gov/pubmed/16431409
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17702
Registered: 05-2003
| | Posted on Monday, May 27, 2013 - 02:44 pm: |
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Attention AJS
When looking up supplements I found this on NAC
http://www.pureformulas.com/nac-enhanced-90-tablets-by-nutricology.html#sthash.XKLuu6vB.dpbs
Not too good in my opinion.
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ajs
Forum Leader
Username: Ajs
Post Number: 773
Registered: 03-2008
| | Posted on Monday, May 27, 2013 - 06:59 pm: |
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Rise'!
That is some supplement in a pill form. Not the pharmaceutically made product I take from Germany. No one could ever convince me that NAC in effervescent form is not helping me. Hate to be so blunt, but that is my belief. The study:
http://www.sciencedirect.com/science/article/pii/S1053249803000998
Armand
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17703
Registered: 05-2003
| | Posted on Tuesday, May 28, 2013 - 02:19 pm: |
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Hi AJS
I forgot you were taking NAC by aerosol. I have no idea if this statement is true but I will always share important information.
I have mixed feelings about NAC and Glutathione for transplant.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17707
Registered: 05-2003
| | Posted on Friday, May 31, 2013 - 11:05 am: |
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For anyone interested who is following this thread
I should have stated why I have mixed feelings about NAC and Glutathione.
Right before I was diagnosed with Chronic Rejection with my first transplant, A few months prior I started taking Glutatione with NAC - I believe it was the Glutathione GSH that caused my trouble.
I just took NAC with Glutathione from Biotics Research I believe twice daily. My nutritionist at the time of my diagnosis told me that my liver was toxic of Glutathione. He has his own way of testing for vitamins and minerals.
Whatever the case maybe, after going off NAC and Glutathione my health did not improve and a few years later needed another transplant.
I guess it is normal for anyone to feel suspicious of something they took that may have caused them health trouble. Till this day, I will have no idea what lead me to have lung problems but I learned too much of a good thing is certainly not good.
When I was little I was given NAC by aerosol and if I new this was still available and helpful, I would probably would have taken it many years later up until transplant.
After seeing the results on the above website, I will probably not take a NAC capsule by itself but will continue to take my multi vitamin that contains NAC.
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ajs
Forum Leader
Username: Ajs
Post Number: 774
Registered: 03-2008
| | Posted on Saturday, June 01, 2013 - 04:05 pm: |
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A couple things, Rise. It is effervescent that I take, like an alka-seltzer. It is pharmaceutically made in Germany.
As far as all the research I did eight or nine years ago when I first started taking it, NAC is a PRE-CURSOR to Glutathione (GSH). That is, it makes your body produce more GSH. From all that I read, you can't take GSH as it breaks down in your digestive tract, rendering it almost useless. So not sure why or who told you that you should be taking GSH. It's a fact that people with lung issues have a lower amount of GSH in their lung fluids. That is one of the major reasons I started taking it.
I seriously doubt if NAC contributed to your problems. As I've said before, Scott Palmer told me a while ago that if he could study five things to prevent BOS, NAC would be one one them. He is well aware that I take it.
All I know is that I get sick less than almost any one I know. My family will get flu, colds, hacking coughs; I get nothing. Of course I can't point to NAC as the reason, but it certainly is not doing anything negative. Before transplant, I was getting at least two cases of bronchitis a year, lasting over a month. When I started taking it, I got ONE case in the next 3 1/2 years. So as you can tell, I'm a total believer in it. You should read the testimonials from people at my sister's website. Amazing results.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17714
Registered: 05-2003
| | Posted on Sunday, June 02, 2013 - 12:54 pm: |
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Hi AJS
May I ask - if your lungs are doing well now why do you think you need to inhale NAC?
You are lucky that your transplant team supports you with this treatment.
How about your elevated PRA levels that you have had in the past? Did you have elevated PRA levels prior to taking NAC?
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ajs
Forum Leader
Username: Ajs
Post Number: 775
Registered: 03-2008
| | Posted on Sunday, June 02, 2013 - 01:29 pm: |
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Rise, honey....I don't inhale it. As I said, I drop it in water like an alka-seltzer then drink it. I use it to take my morning and evening pills.
Why do I still take it? because of a study I saw from one of my favorite researchers in Belgium, Dr. Geert Verleden. This is also the Dr. that started adding Azithromycin to his protocol, 3 X a week, and saw the rate of BOS in the 1st three years go from 35% to 15%. That is why I started Az., even though my Dr. at Duke (not Palmer) said they hadn't had much luck with it! I said, not much? or none? A month after I started it, my lung function had increased 15%, and he admitted on my next visit that maybe there was something to it. They now recommend it in many cases. Roughly 50% of people are 'responders'.
And no, I don't have a 'high' PRA. I had zero anitbodies before tx, and developed one very low titer donor-specific antibody after transplant. I get IVIG once a month to keep it down, which seems to have worked. I also think the IVIG helps my general health, as it pumps up the IgG, which is the part of your immune system that fights disease but does not cause rejection. That's why in your Immune Globulin blood tests you will notice that IgG should fall in the normal range while others are very suppressed.
Here is the study he did on NAC. It is admittedly old, but nonetheless, promising.
http://www.sciencedirect.com/science/article/pii/S1053249803000998
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17717
Registered: 05-2003
| | Posted on Sunday, June 02, 2013 - 02:27 pm: |
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Hi AJS
I am very sorry that I misunderstood what you are were talking about.
I am very happy you shared  Very interesting study- are you in contact with anyone from Germany?
Keep up the GREAT work and of course continue to keep us posted.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17735
Registered: 05-2003
| | Posted on Monday, June 10, 2013 - 04:59 pm: |
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I joined Life Extention a few weeks ago and spoke to a doctor today about taking vitamin C.
He looked up Cellcept and Vitamin C and found this for me from Medscape.
ascorbic acid + mycophenolate
ascorbic acid will increase the level or effect of mycophenolate by acidic (anionic) drug competition for renal tubular clearance. Significant - Monitor Closely.
_______________________________
I will no longer be taking Vitamin C. He gave me some great advice.
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