Avatar of Jennifer


January 27, 2010 in Uncategorized

Hey Guys, While looking up new PKU foods to order, I found a new product from Applied Nutrition called PheBLOC. As I understand it, it's similar to our formula (in pill form), but full of Large Neutral Amino Acids, which compete with phenylalanine to cross the blood-brain barrier. The idea is less phe will then enter our brain because of all the competing amino acids. However, we WOULD have higher levels of phe in our blood, which isn't harmful BUT makes taking a level difficult. Our readings would appear high, but in reality be much lower in the brain. There is currently no way of measuring blood phe levels in the brain unfortunately :-S. This product also emphasized how a PKUer could enjoy a much more "relaxed" diet since not much phe would be getting into the brain. It said store-bought grain products (pasta, rice, bread, etc.) could be eaten without hesitation and limited amounts of dairy items could be consumed as well. COOOOOOL!!!!! This is where the dilemma comes in. I talked to my dietician about trying this product and she didn't think it was a very good idea. Since I am a Pre-Med college student, I obviously don't want to risk any damage to my brain trying out this new product. I need all the help I can get! :-) My question to you is: Has anyone had any experience with this product, good or bad? Any feedback would be great! Thanx!! Jenn P.S. Here is the website if anyone else would like to check this product out!

3 Reviews of PheBLOC??

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    I would have to agree. My dietician recommended I not try it since my levels are usually good. If your levels aren’t going down, I don’t know how you would really know if it was getting to your brain or not (although maybe it would help some symptoms).

  2. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    HI!! I got to the point where the diet was tough for me in college and soon the same thing happened to me. I, too, found a website for LNAA’s in the form of NeoPhe and was frustrated that no one had told me about it! I think depending on your control of your diet they may be useful, for sure. This is my story… I ended up taking them for a year because in college my extremely restricted diet of 150 mg was near impossible for me to comply with, let alone having all of the formula. So I started NeoPhe. It did work well with symptoms of high levels being alleviated and I did get to eat ‘normal foods’ mostly pasta and bread… but just like you said you cannot see how your blood levels are reacting. For me, the huge jump from 3 g to 30 of protein was hard for me to accustom myself too and I went even over the liberalized 30 g and treated them as ‘pills that let me eat anything.’ Once I stuck to the 30 g, it cleared up my head enough to be a little worried that my levels were still high… and it is not safe for pregnancy because it does not affect the concentration of PHE in the blood (or if it does, it is very little and they don’t have conclusive evidence of this yet). So, not because I want to run out and get pregnant- BELIEVE ME- but because I didn’t want to accustom myself to the liberalized diet and then have to deal with this restrictive diet after getting used to eating the normal foods WITH a babies well being in my hands… I chose to come off of them… though I do have extras from my last order and take them if some event pops up and I am unprepared (I carry the pills in my purse). I think it depends on what you are looking for… did it greatly reduce the restriction of my diet? Yes. Did my symptoms of high PHE levels go away? Yes. However, like I said, they really cleared my head enough to realize that in the long run I thought it was more important for me to be able to monitor my diet (through blood levels). If you go overboard on the LIBERALIZED NeoPhe and higher protein diet… then you are just back to the beginning- with even HIGHER blood levels I’m sure. Point being, if you are doing well on your diet of LoPro foods and formula… that may be why your clinician was skeptical to change you. It is my understanding that these are used mainly for those who are having difficulty maintaining good levels on their current diet regimen. Sorry that was written very quickly and it might be all over the place… message me if you want!

  3. Registered: Sep 16, 2011

    Posts: 0

    Fullerton, California

    Hi Jenn, I know you posted this about a year ago, but thought I would comment on it anyway. I have PKU and my sister does as well. My sister is on Kuvan as am I. Although I am on PheBloc and she is not she is on another product I just cant remember what that is right now. She is in her late 30’s and had a very healthy baby a few years ago. This is where the problem lies with women taking PheBloc. Although phe in our blood is not dammaging to our body as far as anyone has ever seen, it has a huge effect on a fetus. A baby until it has reached a point in which it can matobalize the phe on its own is harmed by the phe just as you would be. You could actually loose a child because of this as my sister did. Also my sister has found that high phe levels effected her ability to get pregnate. I dont think there has been any study to prove or disprove this but our doctor Dr. Richard Koch and nutitionist Dr. Kathry Mosely both of who were involved in the study of PheBloc pointed this out to my sister and once she got her levels down she was able to get pregnat.

    So in short the real problem lies in child bearing not that PheBloc is unsafe per say but rather unsafe for a fetus. My sister doesn’t really crave high phe foods but never considered a product like PheBloc an option because of the fact that she wanted to have childern. Thats not to say that you couldn’t use a product like PheBloc and stop for a planned pregnacy. I just think doctors recommend against it since pregnacys aren’t always planned.

    BTW just in case you haven’t already found this out PheBloc allows you to take 80 percent of your protien intake via normal food and even eat meat. Obviously we all know this is inconcievable with a normal traditional PKU diet. So you are taking a huge amount of Phe when using a product like PheBloc. I understad that levels as high as 20 mg/dl are acceptable for a PheBloc diet.

    Oh and one last comment you can actually measure the Phe level in the brain though an MRI. My sister and I have had this done personally. They were testing the effects of the Blood Brain Bearier (BBB) had on brain leves vs blood phe levels. Obviously this is not something that can be done on a regular basis or at a reasonable price (ours was free since it was part of a study). But there is an understanding of how much of an effect the BBB and PheBloc has in lowering the phe in the brain. In other words they should be able to calculate if you took x amout of PheBloc and your blood phe level was y then your brain phe level would be z.

    Hope that helps not just you but some other inquizative people out there.

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