Diagnosed today with wasting syndrome

[Allentownboy]

Hi everyone,

I went to visit my doctor today and was informed that I have dropped from 167 lbs at my initial diagnosis Sept 22, to 145 lbs today.  He is terming this wasting syndrome because of the the rapid loss.  Testing done a week ago doesn't indicate any parasites in the intestines, and my appetite seems normal at this point. My OI, which is PCP, is under control, and I have no other known infections at this point.

He is trying to now get me approved for a steroid treatment through my insurance to try to get my weight and muscle mass back up.  He was concerned, but not "overtly so". 

I came home and got online to learn about it, and frankly now can't stop crying.  Everything I am reading seems to point to this being an indication of being near "the end".  How can I fight this?  Is anyone else in my position?  Please, someone give me some pointers as I am near hysterics.  This is so much too handle on top of new diagnosis and HAART therapy side effects.  I am really frightened.  I am not ready to die.

[Miss Philicia]

No sweetie, it's not the end.  Don't go down that road mentally.  I had wasting and if you apply yourself you'll gain the weight back, and the hormone/testosterone therapy will help you do this.  I'd recommend going to a bodybuilding type store and buying whatever whey protein they have that has the most grams of protein.  If you go to the gym, don't do cardio -- just do resistance training.  Don't eat any "diet" products, eat the full strength stuff (milk, ice cread, soda, etc.).  You can also do what bodybuilders do in terms of smaller meals, but more of them during the day (harder said than done in terms of planning) as your body absorbs food more efficiently in this manner.  Another secret I had was to make chocolate chip cookie dough and eat it all the time.  Surprisingly my lipid panel stayed fine, and cookie dough both cheers me up and porks me up.

Also technically HIV wasting is defined that it be not in conjunction with any other medical issue, and if you had PCP recently then frankly I think it could be partially due to this, but then again maybe not.  You need to give your body time to recover from that if it's been recent.

Try not fishing around on the internet for worst case scenarios -- I had wasting twice and each time I gained the weight back, and it's not recurred now for six years.  In fact, I'm probably 5 lbs overweight now.

[Allentownboy]

Bless you Miss Philicia.  I'll stop crying now.  This whole new world of HIV is terrifying, and there are days I look it in the eye and say "I am going to make it and be fine", and then stuff like this happens and it can unintentionally take the wind out of your sails.

I am fighting really hard, and still believe I have alot of life left in me.  I am grateful for you and others here who help to prop we newbies up with advice, support and love.  Oh, jeez, here I go crying again...

Again thank you, you sweet soul, for taking the edge off for me.  I feel less scared now.

[J.R.E.]

Hello...


Wasting does not mean "the End"  I went through wasting throughout 2003 ( I've mentioned this many times, probably too many for some) I lost just over 30 pounds. went from around 170 pounds down to 140 lbs. It was at this weight ( 140),   that I finally started on meds. Once I started on meds, I couldn't get enough to eat.

 As Miss P says, don't allow yourself to go down that road of mental anguish.  You will gain that weight back. I gained all my lossed weight back, and then some,  and it happenned quite quickly after starting on meds.  I see you just started on meds.

You may want to try eating more meals during the day. You may want to supplement those meals with boost, or ensure.  I preferred Boost high Protein. And I still drink boost today. Maybe three a week.

I was able to gain  that weight back within 10 months, and then some. I went from 140 to about 183, and then finally settled down to about 173.

Get yourself a wall calender, and ONCE a WEEK, weigh yourself, Do this at the same time, same day, every week and log it on the calendar. Also make sure you use the same scale.

I am sure that you will see improvements in weight gain, but also as Miss P states, you need to give your body some time to recover.

When your hungry EAT !! If you get the munchies EAT !! I think once your medication really starts to kick in, you will notice ( and see) the weight coming back !!


Things will be OK.  You may not think that right now, but things will OK


Take care-( and EAT PROTEIN)----------Ray

[Miss Philicia]

No offense to Ray, but the reason I veered towards bodybuilder products rather than more easily available things like Boost or Ensure (sp?) is that they have about three times the amount of protein per serving.  I can't recall the price breakdown between the products, but once you settle on one you like you can look for the best price on the internet.  I think Isopure has the highest amount per serving, something like 40-45 grams as opposed to Boost's 15 grams.  Just be prepared for Isopure's nasty taste, but that's why I hinted around in my first post about "applying yourself" -- if you want to gain the weight back quickly you may have to sacrifice complaints about taste.  It's not like you'll be drinking it for the rest of your life, just until you gain enough weight back, then you could switch to something like Boost.

Now stop that crying and WORK that cowboy hat! ~

edit: Myoplex is also good, and that's what I used.  Its less grams than Isopure, but still double what Boost has and it tastes much better, especially if you mix it with whole milk and fresh strawberries in a blender.  Totally like a thick milkshake if you prepare it that way.  I even used to take a blender with me on airplanes to make it when I travelled.  Dedication!

[Dale Parker]

Hey Allentownboy:
 I don't think I had wasting but I did lose a fair bit of weight. I was laid off last September and lost weight as my diet changed as I wasn't under any work pressure. Then in the spring I lost about 14lbs in just over a week without changing my diet. This was prior to being diagnosed and starting the drugs. It took me 3 months after staring the drugs to gain 0.2lbs. It's been a real bitch to put back on. I have managed to gain just under 9 lbs in 2 months. I was eating a fair bit of food including, chocolate sundays every night, Homo milk, tons of spaghetti. It was almost impossible to to find non diet salad dressing in Toronto. Everything is diet.
   Looking back at it I think that I over did the sweets a bit. I was desperate to gain weight. I was sick and tired of having my pants around my ankles if I didn't do my belt up tight. The excess pant material was bunching up leaving marks in my waist. Also with being unemployed people thought that I didn't have enough money to buy food. Looking back at it I should of slowed down a bit and done more exercises.  Of course I started to gain weight just after I went out and bought 4 new pairs of jeans that actually fit me.
  Depending on which meds you are on you may have to watch your cholesterol. My doctor warned me about that as I'm on Kaletra and Truvada.
Best of luck
Dale

[leatherman]

I would also suggest that your weight loss could be related to being ill with PCP. Normally about 135lbs (that was my weight when I graduated from high school nearly 30 yrs and still my weight today - except for twice when I hospitalized with pneumonias), I dropped to 115 before I was even out of the hospital after 5 days. And then continued to drop before hitting 105 at the lowest. Frankly I looked like nothing but skin and bones - and it was very scary.

Everyone has already given you good advice. Lots of little meals (that's all I could manage because I was still pretty nauseous and weak after getting back home). Then lots of snacks. Put a poz spin on the situation and enjoy being able to eat whatever, whenever and how ever much you want for right now. Matter of fact - be indulgent and eat a lot of of that "good stuff that's bad for ya".  LOL Personally, I ate LOTS of cheesecake and didn't regret a single delicious mouthful. LOL

IMHO, having the PCP was closer to being "the end" for me, as it probably was for you too though you didn't realize it. The wasting that was caused by being that sick, well, that just takes some time and effort to recover from. I went into the hospital looking fine but feeling like I had the flu while the doctors freaked out that I was about to die. When I left the hospital, though the docs all said I was better, I looked like death warmed over and had to actually start fighting to stay alive - by eating my way back to health while taking the HIV meds to knock down my viral load. You've actually probably hit the low point and you're on the way to recovery although it doesn't look it. Hang in there, keep monitoring your condition, and follow all the good advice everyone has passed along.

Best wishes for some better health - and a lot more pounds!
Now, go eat some cookies!

[Allentownboy]

OK, I just contacted a health food store here in Phoenix (a GNC type place down the road from me) and they told me that they have a product that mixes with milk and is designed specifically for weight gain.  The person on the phone told me it has 68 grams of protein per serving and 1000 calories.  The protein amount is supposedly 168% of your daily allowance. Yikes!

I am going to get it tomorrow morning and will do the recommended 2 drinks a day along with my regular eating.  They also told me to try a probiotic since I am on so many antibiotics at the moment, and it could be messing with my ability to absorb nutrients properly.  I never took one before, so I guess I'll give that a shot too. Anything to get some weight on my scrawny behind.

Here's to hoping this will help...and thanks for all the words of encouragement from all of you.  I am glad you are all here, and someday, when I am stabilized and have dealt with this better, I hope to help others not be so scared either.

And Miss Philicia, I PROMISE to work the hat just for you!

[J.R.E.]

I would also suggest that your weight loss could be related to being ill with PCP.
Now, go eat some cookies!

Yes, I didn't know you had PCP ,until I read your signature line.

 They also told me to try a probiotic since I am on so many antibiotics at the moment, and it could be messing with my ability to absorb nutrients properly.  

Yes , get some probiotics. DanActive(light) is good so is Activia (light). You can get them in the supermarket !

http://www.danactive.com/


Ray

[tommy246]

I had pnuemonia in august and dropped 22 lb in three weeks now have gained 14 lb back and on a diet to not gain anymore

[max123]

hi allentown,

as a newly diagnosed myself, i have zero experience with the pcp/wasting issues, but just wanted to say hang in there and am wishing you the best for a complete bounce back. i know what you are feeling in the 'being so new to this' part alone & it can be overwhelming at times. you have some great forum teachers behind you here... listen up, take a breather, treat yourself right & stay focused. 

max

[rioz]

Hi "Allentown",

For what it's worth, I was diagnosed with PCP and wasting in late 2007. CD4 count was 54. Many of us have "been there". It seems hard to imagine that you will get and feel better but you will. I tested positive in 1985 and over the years I all but forgot about it. My therapist called that "a stunning case of denial". Speaking of which, a therapist would most probably help with the emotional  aspect of all this. Much like several other posters here, I now have to watch what I eat so as not to occupy two zip codes! Take good care of yourself, welcome to these forums and eat some ice cream for me.

Richard

[Allentownboy]

I want to thank everyone who contacted me both here on this board, and privately via PM and email.  It meant a great deal to me, and really helped to calm my nerves.

Being as fragile as I am right now both physically and mentally, I am finding myself prone to getting scared pretty easily.  It is something I am trying to get under control, but there have been days when it seems so overwhelming.  Note that I didn't say "hopeless" because I don't feel that way.  It just seems with all the information being thrown at me, I can understand why I misinterpret things, or read deeper into them than I should be.  With time will come a more balanced and nuanced view of this illness and effects on my body.  Just like so many of those long term survivors here who have been around the block and are so willing to offer wise advice.  For that I am grateful.  You are all a real lifeline right now for me (and I suspect many others) and it helps me to understand that I am not alone in this...

By the way, I got that shake mix I was mentioning in an earlier post, and it isn't half bad.  The protein bloats the daylights out of you, but I would rather deal with that than have my body take anymore protein from what is left of my muscle mass. 2000 extra calories a day, here I come!!!

As an aside, does anyone have any recommendations about getting to a gym and doing exercise at this stage of my illness, since I am so newly diagnosed?  Should I wait until my CD4's are higher before risking going out to a gym full of folks?  I admit to being afraid to venture much outside the house due to fear of catching something, but I realize not all of that is realistic.  I don't want to become agoraphobic and lock myself away.  Life can't stop, so I was wondering anyone's thoughts on the subject.

[Inchlingblue]

Exercise is very important but I would say it's probably not a great idea to venture to a gym if your Tcell count is under 200. Gyms tend to have lots of bacteria and other germs (not to mention H1N1 these days). Even with Tcell counts that are in a normal range, I think it's important to wash up after a work out. If not a shower I at least wash my hands and my arms all the way past the elbows and rinse with warm (or even slightly hot) water.

Having said that, I do think you should feel free to do a moderate amount of exercise, it will really help you recover mentally, physically and emotionally. You can listen to your body and know what the right amount is for you. I'd be more comfortable going to the gym after the Tcells get above 200.

Since you're in Phoenix and the weather is probably nicer now that the Summer is over, I think a nice hike at one of the local mountains would be a great way to get a good workout.

[Miss Philicia]

Order some of these and like Inchling states wait until you cd4 count is higher, just to be on the safe side.

http://www.bodylastics.com/

If you're going on testosterone/hormone therapy I'd definitely try to work out at home -- there's lots you can do.  You can also snag just a set of barbells and a tricep bar.  That's what I use.

[Allentownboy]

Thanks for the advice everyone.

I have exercise equipment here at my home, so I am going to start on that this week.  Nothing heavy, but I need to start somewhere as I am beginning to atrophy and need to combat that ASAP.

One thing I did find out today which struck me as crummy news is that I got my CD4 percentage back from my doc, and it is pretty low at 1.9%. Not great.  I don't even want to think of what it means, but I am going to work on getting that up to be more like others here who have had a similar situation.  Med adherence and eating properly, as well as paying close attention to my body should get me where i eventually need to be.  It make take months or years, but I am in it for the long haul.

If people here can do it, so can I!!  

[J.R.E.]

One thing I did find out today which struck me as crummy news is that I got my CD4 percentage back from my doc, and it is pretty low at 1.9%. Not great.  

If people here can do it, so can I!!  

Try not to focus on the numbers right now. Once again, the main thing right now is nutrition, adherance to the meds, and to stay mentally focused, so you can move physically forward.

I also had a very low percentage, when I statred on meds.  It was at 5% , so I understand how your feeling.  It will take some time, to get that number up. 

Make sure to get plenty of rest too. you will need some good sleep ! Don't push yourself.


Ray

[Miss Philicia]

Yeah, I agree -- now is not the time to obsess with the numbers.  You're immune system is very severely damaged, just accept it.  There's not much you can do except pop pills and not go out on wild partying sprees.  And yeah, no need to push yourself with the gym -- the gym will still be there in a year.  Maybe for a while just focus on EATING and allow yourself even to get fat.  You can work the fat off later.  Plus having just had PCP you'll get tired quicker than you realize it.

When I had wasting issues they were not concurrent with PCP, so I went to the gym.  I'd not have done so if I'd had PCP now that I think about it.

[leatherman]

I'd not have done so if I'd had PCP now that I think about it.

after my bout of PCP for 5 days in the hospital, it took 30 days before I had the physical strength to climb up the stairs to the second floor of my house and get back into my own bed. Just going to the kicthen and eating to replenish my weight was plenty of exercise for quite a few weeks.  oh and also being that weak means I didn't leave the house much either. That may sound bad but when I only had 10 or so tcells, I was better off not being exposed to all those germs out in the world anyway .