Wasting question

[minismom]

Wasn't really sure where to put this.  Probably should have put it in Mim's thread, but thought I'd get more input this way.  Mim has gotten an official diagnosis of 043-wasting.  She's had blood, urine, and stool testing done, but we've not gotten any of the results back.

From what I've read, wasting tends to come in cycles.  My questions, for those who've been diagnosed with wasting are: How many episodes have you had?  How long did they last?  How far between episodes?  Did your body alert you that you were going (or already in) a wasting episode and, if so, what alerted you?  Lastly, what did you do during the episode to get through it or what did you do to try to keep from having another episode (if that's even possible)?

Any information is certainly appreciated.

Mum

[newt]

I guess syptomatically this was inevitable but it's a moot point with HIV+ kids whether it is wasting, failure to thrive or growth delay. To waste away you gotta have sommat in the first place. No-one knows for sure how this turns out in children, it's hard to extrapolate from adults to 8 year olds who've had HIV since birth.

Treatment for adults is often growth hormone, its analogues or other steroids, but, yup, we both know already, for kids, this choice a difficult call....

As long as Mini is happy, that is the important thing.

- matt

[weasel]

Hi Mini's mum 

               I hope Mini is doing better !

    I was diagnosed with wasting ! three  years ago !

    I do NOT think ( in my case ) I was wasting , I WAS    eatting to much  junk !

    I no longer eat  SUGAR  and try to stay away from all white food ,  Wonder Bread is NOT in

   my diet !   either is white sugar or any kind of fake sugar !

   WE  have switched to LOCAL  grown  BISON .   I do not feel all the drugs in beef  agree with

  me . I am sure it really does not agree with many ..........................

    I also use  LOCAL    HONEY !   It is a good source of nutriants , IF    MINI's  "T" cells are high

  enough ? That I would run by your  doctor !   OH " RAW " honey   only ! , cooked  honey  is just

 like drinking corn syrup !!!!!!!!!!!

                                           My thoughts , hope Mini will be well   
                                                                            Carl

[AlanBama]

I know how concerned you are about this honey.   I've experienced quite a bit of wasting over the years.   The difference, I started out as a 30 year old adult.  A child like M., who is in the growth stage of her life and experiencing wasting -- it's a whole different kettle of fish.

I did the protein shakes/weight training for a few years (I'll have to send you some of my "hot" pictures, when I could still turn a head or two).   Recently, I just don't have it in me to go the gym anymore; don't have the resources financially, the clowns at our local Y won't offer me a "disabled" rate (if I lived in a particular apartment building in town, all the residents there can attend free)   How unfair is that?
I've got the 'stick arms and legs, big belly' syndrome.   I read in the most recent POZ (that our Mark is in!) about two new drugs being tested for belly fat.....

I know this is a big worry for you; perhaps a nutritionist could offer some guidance?   Let us know if you find out anything

HUGS, Alan

[Miss Philicia]

From what I've read, wasting tends to come in cycles.  My questions, for those who've been diagnosed with wasting are:

How many episodes have you had?

Two.  First was at the end of 1999 and the second was at the end of 2001 

How long did they last? 

The first one I lost maybe only 20-25 lbs, the second time I lost almost 40 lbs.  I was seeing a doctor almost monthly all that time, and I was weighed each time and so things were noticed quickly, but that also shows how quickly I lost the weight.  I'd say the first instance I gained everything back in 8 months, and the second time took maybe two years.

How far between episodes?

Stated above, but there was almost exactly two years in between episodes.  For clarity sake I think the second time was brought on from several factors.  I was laid off from my job I'd had for almost a decade, which happened a few months before 9/11, then after 9/11 I saw two people jump in front of subway trains and commit suicide, then because of my unemployment I had an insurance issue that forced me to switch to a new HIV specialist, and during that lag time I went a few months with no testosterone supplement/injections and then also caught a nasty case of bronchitis.  But I think the lack of testosterone injections that I'd been put on since early 2000 was what did it.

Did your body alert you that you were going (or already in) a wasting episode and, if so, what alerted you?

Like I said, if you actively weight yourself at least monthly it's very easy to monitor this.  If one doesn't go to your doctor except on the now normative 3 or 4 month schedule, I'd advise weighing yourself at home at least monthly.  I probably weigh myself weekly at home, but that's just out of habit now not necessity. 

Lastly, what did you do during the episode to get through it or what did you do to try to keep from having another episode (if that's even possible)?

Testosterone injections every other week, and I think mine was specifically deca-durabolin which is the same thing bodybuilders use, but of course they're abusing the substance at much, much higher levels.  Of course, under a physician's care they monitor your blood work for any liver or kidney issues.  IMO Androgel is fine for run of the mill low testosterone levels which contribute to depression or sexual dysfunction issues, but for wasting specific issues I'd go the injection route. 

But as I have discussed with your privately, mini's issue differs from what I had in that it apparently is not appetite related.  My issues were specifically appetite related (and in hindsight that began a good year or so before the first wasting) combined with severe diarrhea issues which began once I started on protease inhibitors, as well as apparently malabsorption issues. 

I'll also add for other readers here, that testosterone injections are not a magic bullet -- you have to proactively combine this with upping your protein and calorie intake and resistance training.  I'd not do ANY cardio as that's just going to burn off more calories.  Aside from forcing myself to eat 3 full meals, I also at least daily added one 40 gram protein shake, if not two.  For comparison's sake I know a guy in my local support group with wasting and he gets the same injections that I did, but he doesn't do this other stuff that I just specified and he's seen little to know progress in his condition. 

As far as my current situation, my testosterone levels last time I checked were within normal range and I halted doing injections five years ago, and did Androgel for one year after that and then stopped that too.  So basically I've now maintained my optimal weigh naturally for the past four years.

[minismom]

Thank you SO much, Philly, for your explainations.  It's exactly what I was looking for.  Right now, DrF has us weighing her every 2 days and e-mailing him once a week.  She's been staying pretty steady since we've added the extra protein (powdered egg whites), instant breakfast, 6 meals / day, and extra (organic / food-based) vitamens.  We're hoping to find better answers once we get back her test results.

Mum