Limbrel Update (Limbrel Part III)

I should start with the good news first:  My hands have been hurting less recently I have been seizing less. My foot has been less numb, my right leg giving out less, and I have been walking more steadily.

Hands aside, I don't think I have Limbrel to thank for this. Limbrel is not supposed to impact the neurological system. I think the more logical explanation is that I was granted some kids of temporary reprieve, which points (again) to an auto-immune condition such as MS or Lupus, rather than Limbrel as a miracle frug.

So I jumped on the scale this morning. OK I stepped on the scale. It is made of glass, so jumping -even if I felt up to that first thing in the morning -or ever (and I never do) is ill advised. The last number was 5. Actually it was 5.5. So I have gained 9½ lbs. That's the same as 10 lbs as far as I'm concerned.

Ten pounds in a MONTH!  And I'm only 5'3"!  That is a big deal. And not in a good way.

My first thought when I saw that number on the scale... -actually, it was my second thought (my first thought was unprintable -even for me) was how many calories are in these pills???? It was a kneejerk reaction -almost a joke. But then I realized it is a valid question. As I mentioned before,  Limbrel is not a drug. It is technically a medical food product. Well, the FDA has rules about food labelling and nutrition information, right?  So if Limbrel is a food, not a drug, things like calories and percentage daily values should be available, right?  Hmmmm. 

So I had a little look in my favorite place: The Internet.

I found Limbrel's official stance on the subject: It is regulated under the Orphan Drug Act (still love that name!) Amendment 1988, later incorporated into the Nutrition Information Regulation Volume 21 101.9(j)(8)(i)-(v).

That took a little digging, but I found it.

CFR 101.9 basically deals with all that nutrition labeling stuff, you know, the little grids we see on practically everything except lettuce and dog food these days?

which is what I expected.  But Limbrel wiggled out.  Here is the verbiage:

(8) Medical foods as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee(b)(3)). A medical food is a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation. A food is subject to this exemption only if:

(i) It is a specially formulated and processed product (as opposed to a naturally occurring foodstuff used in its natural state) for the partial or exclusive feeding of a patient by means of oral intake or enteral feeding by tube;

(ii) It is intended for the dietary management of a patient who, because of therapeutic or chronic medical needs, has limited or impaired capacity to ingest, digest, absorb, or metabolize ordinary foodstuffs or certain nutrients, or who has other special medically determined nutrient requirements, the dietary management of which cannot be achieved by the modification of the normal diet alone;

(iii) It provides nutritional support specifically modified for the management of the unique nutrient needs that result from the specific disease or condition, as determined by medical evaluation;

(iv) It is intended to be used under medical supervision; and

(v) It is intended only for a patient receiving active and ongoing medical supervision wherein the patient requires medical care on a recurring basis for, among other things, instructions on the use of the medical food.

And that's all very well and good, but here I am gaining ten pounds in a month with no logical reason why. OK I am craving noms like a lolcat on weed, but I totally blame the Limbrel for that. I looked up weight gain as a side effect for Limbrel, and they claim there is none. I Googled 'Limbrel weight gain' and guess where I ended up?  Yes. Back here on OSM. *Sigh.* Limbrel is a very new frug, so not much out there on it yet except the official blurb, so I drew a blank.

Sometimes being a pioneer is bad.

There was a theory that maybe the weight gain was new muscle, but I don't think this is the case. I don't have that many muscles around my midriff, which is where I am gaining most of the weight (unusual for me). It's not muscle. I can feel myself getting fatter. I can feel the difference in my body as I wash or turn in bed.  I am not happy with this. 

And I am not sure what to do? I have been eating more carbs for many months now. In fact, I have been eating mostly carbs. I had already gained some weight using this strategy, but at nothing like the rate of the last month.  High-carb seems to help with the seizures. So I was OK with a little weight gain if it meant a life somewhat closer to normal.

But I cannot keep gaining at this rate. I am out of clothes for one thing. And I hate being this big for another. As I am exercise intolerant, the only thing which works for me is an Atkins-type plan. however eating Atkins makes me very very tired -although if I keep very strictly to it, I will seize less.

I guess I am going to cozy up (again) with my much-thumbed copy of the Atkins book -for now.

I will keep you guys updated.

Comments

[yanub]

The good thing is that there are now more forums for people who follow Atkin's for seizure reduction. Plus, you and I can always recipe swap.

That Limbrel is suspicious stuff. I wonder if it is mostly sugar?