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Author Topic: I'm wasting away  (Read 2970 times)

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Offline Incognito12

  • Member
  • Posts: 30
I'm wasting away
« on: February 06, 2012, 10:53:56 PM »
For most of my adult life I've weighed 76kgs. For the past 6 years, It has gone down to 66/67kgs. I put this down to change of climate/diet/lifestyle. (I had moved to thailand).
Last october I was diagnosed and had a cd4 count of 14. I started meds.  Every month since october my weight has continued to drop by about 1 kg per month. I force food down every day. My doctor shrugs and tells me it's normal.
Last night was the final straw. I met some colleagues/aquaintences whom I hadn't seen for 3 weeks and the look on their faces said it all.  I made up some story about having throat cancer/chemo and they seemed to believe me. (maybe). I went home and cried myself to sleep.
Is there somebody out there who has experienced this and regained their normal weight? Is there light at the end of this long, very dark tunnel?
I'm starting to feel that I can't take much more.  Can someone throw me a lifeline? Give me some kind of hope? Or is it a one way spiral? My cd4 is now about 60 and vl 0.
Sincerely
tb.

Offline mikeyb39

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  • Posts: 886
Re: I'm wasting away
« Reply #1 on: February 06, 2012, 11:52:42 PM »
hI Tony,
you will get better, once your CD4's start going up, you will gain some weight back.  When i was first diagnosed i weighed 210lbs and quickly lost down to about 167 pounds, but once I was on meds for about 6 to 8 months the weight started coming back, i'm now back up to 186.

Give yourself some slack and let you're body heal, you will get back to normal soon.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline ratcat

  • Member
  • Posts: 58
Re: I'm wasting away
« Reply #2 on: February 07, 2012, 01:08:53 AM »
CD4 of 14...damn dude, you have had HIV for a long time, probably got it early on when you moved here to Thailand.  I live in Thailand as well, so if you have any questions, feel free to pm me.   I lost about 10 kilo when I seroconverted, and I looked like a fucking alien!!!! but gained it back in 2 weeks.  It will take longer for you, since you have Aids, but you will be fine.  You are taking meds.  What meds are you taking?

And I apologize for using the A word and not being so sensitive, but no point sugar coating a shit sandwich!  Dude, just start eating like a horse.  Go to Mcdonalds and eat the double big mac!  Thai food isn't so high in calories, that is why Thai girls are constantly eating!
« Last Edit: February 07, 2012, 01:12:51 AM by ratcat »

Offline tednlou2

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  • Posts: 4,613
Re: I'm wasting away
« Reply #3 on: February 07, 2012, 01:37:45 AM »
Hey Tony,

I'm sorry to hear you're having trouble maintaining weight.  I wish you all the best for putting on weight, which will happen, I have no doubt.

In full disclosure, I have not disclosed to anyone.  However, I have had to answer questions about why I see the doctor so often and get bloodwork done so often.  I, too, have lied.  I've said I'm on a medication where my liver needs monitoring regularly.  I know you were probably caught off guard with your friends.  I would just suggest not using cancer/chemo as your go-to.  This will only cause your friends to worry, and even ask more questions.  Today, most would worry more about cancer than the fact you have HIV.  Perhaps, say you have a thyroid/metabolism problem--I mean, if you're going to give an excuse that isn't the truth.  But, the "cancer" is already out of the bag, so it would be difficult to now say that wasn't true.  I can see where this will lead to friends asking about the chemo treatments, and you now have to study up on chemo, so you can come off as convincing.  But, I'm not in your shoes and perhaps your friends wouldn't have bought a metabolism problem. 

Best,

Ted   

   

Offline Incognito12

  • Member
  • Posts: 30
Re: I'm wasting away
« Reply #4 on: February 07, 2012, 03:35:45 AM »
Thank you for your staight talking replies guys. It's exactly what I needed to hear. My meds are;  stocrin, ricovir-em, trimoxazole.
I try to eat junk food every day but it's still very difficult as I have absolutely no appetite.
I can't tell anyone here my situation as none of the people I know are particularly close. I've only told my best friend in N.Y. who has been very supportive.  I just need to know there is light at the end of the tunnel from people who have had first hand experience.
Ted,Ratcat,mikey....bless you
tb

Offline ratcat

  • Member
  • Posts: 58
Re: I'm wasting away
« Reply #5 on: February 07, 2012, 05:41:27 AM »
I think that Ted had some good advice.  Myself...I used the old toothache excuse.  "Oh, I have a headache...must go to the dentist!"  People will buy your bullshit reasons for this and that.  You don't have HIV tattooed on your forehead.  Nobody knows unless you tell them. 8)

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: I'm wasting away
« Reply #6 on: February 07, 2012, 08:10:35 AM »

Is there somebody out there who has experienced this and regained their normal weight? Is there light at the end of this long, very dark tunnel?



Hi Tony,


I went through it and regained my weight back---Plus some. It will take some time though. I completely understand what your going through.  I believe the main thing, is having the proper specialist, and being checked for everything and anything.

  I wasted away, just a little over 40 pounds within a ten month period , in 2003.  I looked terrible.  Some of my male co-workers were taking bets,on who was going to die first. Me or another co-worker who had just had a heart attack. We both survived !

There were a couple of friends I ran into, and the look on their faces also said it all. One person I hadn't seen in 5 months, said to me "  Don't you think it's time you get started on meds?" He had known I was positive, but not on meds.

It was a wake up call for me, and a real snap back to reality.

When I first started wasting, and suffering some gut symptoms, one of the first drugs I was on prior to HAART, was Cipro- 750 mgs.  This drug was started in March of 03.

By September of 03, I was on VI-Q Tuss liquid.  This medicine was a narcotic cough suppressant, Prednisone-20mg tabs, ( The prednisone was the drug that helped, get my appetite back)   Diflucan-100mg tabs,  Sulfameth-trimethoprim 800/160 tabs, ( later changed to Dapsone)-----  Valtrex-1gm caplets, and Zithromax- 600mgtabs.  I was a pill factory !

In October of 03 , besides the above medications,  I started on HAART. Viramune, 200mg tabs,   Epivir 150 mg tabs and ( at that time) Zerit 40 mg capsules. My weight was still down by about 30 pounds from the norm. I was also on the junk food kick for a while. I also drank a lot of ensure and Boost.

   Currently, I am at 176 pounds. Weight has been as high as 182, after starting on meds.

Yes, It is possible to get the weight back, but, as I stated earlier, you need to make sure your seeing the proper specialists, to make sure that everything and anything is being checked for.

Have you ever had an upper endoscopy done?  If you dealing with constant diarrhea, you need to bring this to your doctors attention.


Ray

« Last Edit: February 07, 2012, 08:35:46 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline J.R.E.

  • Member
  • Posts: 6,969
  • Joined Dec-2003 Living positive, since 1985.
Re: I'm wasting away
« Reply #7 on: February 07, 2012, 08:40:03 AM »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline skeebo1969

  • Member
  • Posts: 5,674
Re: I'm wasting away
« Reply #8 on: February 07, 2012, 10:01:41 AM »


   Hi Tony, 

     The weight will come back over time.  Your immune system may need to recover some before you notice weight gain though, so be patient it will happen.   Your body has been through a lot, burning a lot of fuel in the process. 

    I also dropped considerably in weight, down to about 115 lbs..  But, I now have it all back with a little extra (180). 

   Also, when it comes to diet, try to get as much animal protein as possible. 

   Skeebo
I despise the song Love is in the Air, you should too.

Online Gary S

  • Member
  • Posts: 60
Re: I'm wasting away
« Reply #9 on: February 07, 2012, 10:30:14 AM »
I was put on Serostim (Human Growth Hormone) and it really helped add lean muscle mass. It is VERY expensive (in excess of $8000 per month) but luckily my insurance paid for it. It is approved for wasting and your numbers and weight loss would qualify you...if your insurance covers it.

Offline buginme2

  • Member
  • Posts: 2,759
  • Certified Life Coach
Re: I'm wasting away
« Reply #10 on: February 07, 2012, 10:39:56 AM »
My meds are;  stocrin, ricovir-em, trimoxazole.
I try to eat junk food every day but it's still very difficult as I have absolutely no appetite.


Sounds like you are on the right track with regards to your meds.  I am on the same except for the trimoxazle.  The weight should start coming back.  Just give it some time. 

Instead of junk food though, try eating more nutritious and balanced meals.  In the long run, junk food never has done anyone any favors. 

I cant beleive you told someone you had throat cancer as your HIV cover!  Maybe you could just say you cought a stomach bug, you are in Thailand after all..   ;D
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline thunter34

  • Member
  • Posts: 7,255
  • His name is Carl.
Re: I'm wasting away
« Reply #11 on: February 07, 2012, 11:02:05 AM »
Honey, here in my neck of the US we only use metric when we're discussing dope.

But anyway...

Yeah - my current weight is about 180.  Back around diagnosis time, I was all the way down to about 140 and falling.  Once I got on meds, my weight shot up so fast I was actually secretly longing for a little wasting again.

Is that wrong to admit?  And even now?  I mean summer's coming...
AIDS isn't for sissies.

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: I'm wasting away
« Reply #12 on: February 07, 2012, 11:21:14 AM »
I've lost weight and gained weight thur the yrs. while on AVRs for the last 25 yrs. not sure if any of this really have anything to do with teh AIDS..

 the most I ever weighed was 214lbs, but I have always been Tall 6'2 & 1/2 and that was way back in 89/90  I currently hover around 188 to 190lbs....

but then again I have GI-disease, so I'll loose it and then gain it back again....
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline J.R.E.

  • Member
  • Posts: 6,969
  • Joined Dec-2003 Living positive, since 1985.
Re: I'm wasting away
« Reply #13 on: February 07, 2012, 11:24:15 AM »

Instead of junk food though, try eating more nutritious and balanced meals.  In the long run, junk food never has done anyone any favors. 




I have to agree here.  Try to eat more nutritiously !!.  That junk food can cause problems down the road.

Here's a chart, check it out.  Fish, Chicken, and lean beef is a must.  Check out the different tabs.  You need protein:


http://www.allina.com/ahs/healthwellness.nsf/page/Foods_Protein#meat


AND MAKE SURE YOU COOK EVERYTHING " THOROUGHLY " This is important !!



Ray
« Last Edit: February 07, 2012, 11:28:04 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of April 14, 2014,  t-cells are at 485 Viral load unknown @ this time

 Current % is at 14% (L)

  
 62 years young.

Offline wolfter

  • Member
  • Posts: 4,069
Re: I'm wasting away
« Reply #14 on: February 07, 2012, 11:37:53 AM »
Honey, here in my neck of the US we only use metric when we're discussing dope.

But anyway...

Yeah - my current weight is about 180. 
Is that wrong to admit?  And even now?  I mean summer's coming...

Please!  Have you gained that much Seattle?  You're a tiny little thing. ;D 

Wolfie
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline thunter34

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  • His name is Carl.
Re: I'm wasting away
« Reply #15 on: February 07, 2012, 11:44:54 AM »
Please!  Have you gained that much Seattle?  You're a tiny little thing. ;D 

Wolfie

Yes, I have.  I've gained that much in the past month.  My back shot out, so I had too much time to just lay flat and shove potato chips in my mouth.  I'm  moving into elastic waistband territory.

The Mu Mu can't be far behind.
AIDS isn't for sissies.

Offline wolfter

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  • Posts: 4,069
Re: I'm wasting away
« Reply #16 on: February 07, 2012, 11:48:47 AM »
You might want to watch the high calorie/ high fat approach as you don't want to substitute one problem with another.  Many of us dealt with this issue through the years but eventually you will gain the weight back (if not more). 

I totally understand the shock and terror in people's faces as they see someone who obviously isn't healthy.  I dealt with this first hand when I was in the hospital with my last OI.  After a month in the hospital, I looked like a living skeleton and arrived home just in time to receive a phone call that my father passed away that day.  At the funeral, many were more interested in my condition than grieving for my father.  I didn't specifically address their questions but instead, simply told them to use their imagination.  Surprisingly though, most of them still hugged me. ;D

During that period, my doctor suggested a high calorie diet to build my weight up.  In just one short appointment, he was like, "you can stop that diet now".

Wolfie
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline wolfter

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  • Posts: 4,069
Re: I'm wasting away
« Reply #17 on: February 07, 2012, 11:50:41 AM »
Yes, I have.  I've gained that much in the past month.  My back shot out, so I had too much time to just lay flat and shove potato chips in my mouth.  I'm  moving into elastic waistband territory.

The Mu Mu can't be far behind.

Just please don't accept wearing those damn velcro tennis shoes.  That truly is the beginning of the end. :o

Wolfie
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline newt

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  • the one and original newt
Re: I'm wasting away
« Reply #18 on: February 07, 2012, 04:10:46 PM »
Personally I think this isn't so normal, and your doctor needs to think again and do some tests. Worms is a good place to start.

- matt
"The object is to be a well patient, not a good patient"

Offline newbieguy

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  • Posts: 197
Re: I'm wasting away
« Reply #19 on: February 07, 2012, 06:20:42 PM »
I can relate to your concerns..Before I started meds, my cd4 was as low as 294, the lowest it ever got, and I weighed only about 135lbs! Skinny for someone 5'10! I hated myself and the way I looked. But after meds, I gained weight consistently, and now am up to 160. I have a small-frame, so it works for me. I also work hard to maintain muscle mass and eat a lot of ice cream and carbs. (Yes, Im one of those annoying people who can eat alot and gain very little  ;) ). I also drink protein shakes, and just eat high calorie foods. I wouldnt mind if I gained about 10 more pounds, but I have seemed to plateau at 160-165, but eh, thats ok with me. You might get some bloodwork done to check your thyroid and see if there is anything else going on, but otherwise, just try and eat what I mentioned. try not to obsess over it too much, just try and think positively and make yourself eat even when you arent necessarily hungry. Thats what I did, and I think that combined with getting on meds really helped me gain weight. Hugs.

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: I'm wasting away
« Reply #20 on: February 07, 2012, 08:29:07 PM »
Personally I think this isn't so normal, and your doctor needs to think again and do some tests. Worms is a good place to start.

- matt


I agree with this -- while it's very likely that an undiagnosed, long-festering HIV infection is causing weight loss, you've also lost so much that it's quite possibly not just that but a combination of things. Your doctor should also screen you for other possibilities to rule them out, and also send you to a nutritionist for monitoring. Some high fat/calorie food intake is a solution but you also don't want your lipid panel getting out of whack.

Also, until you solve your loss of appetite you're going to have trouble eating enough to regain this weight. Have you tried smoking pot and/or taking the fake stuff? And as others suggested, a high protein (bodybuilder type stuff) shake should be taken daily.
« Last Edit: February 07, 2012, 08:31:03 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline nixsmail

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  • Posts: 72
Re: I'm wasting away
« Reply #21 on: February 07, 2012, 11:07:04 PM »
i'm not sure but i think you should get checked out. my personal experience was that initially i lost about 30 pounds and then leveled off for about a year, couldn't gain but stopped losing. then started losing again and come to find out i had both nonactive tb and mac at the same time, talk about health dept involvement that was something else, because of the tb. once we found out about the mac the loss has stopped but no weight gain or at least not much. i'm about 136# now and used to be regularly about 168#. during the second loss period my appetite was just terrible, didn't feel hungry and nothing tasted good. that's improved but the weight gain is really slow. please see a doc.
09/05/07 Officially diagnosed +4yrs at the time
11/06/07 CD4 624 (18%) VL 43,200
05/04/09 CD4 272 (15%) VL 521,190
06/10/09 CD4 127 (13%) VL 626,376 Started Truvada/Prezista/Norvir
07/15/09 CD4 849 (20%) VL 379
09/09/09 CD4 594 (21%) VL 68
01/28/10 CD4 706 (23%) VL 127
05/27/10 CD4 655 (22%) VL 322
07/29/10 CD4 750 (22%) VL 220
10/22/10 CD4 669 (23%) VL 65
12/27/10 CD4 720 (24%) VL 270
03/08/11 CD4 644 (23%) VL 631
07/27/11 CD4 694 (23%) VL <20
03/09/12 CD4 601 (20%) VL UND
11/07/12 CD4 693 (23%) VL UND
04/17/13 CD4 559 (23%) VL UND
11/07/13 CD4 846 (24%) VL UND
03/28/14 CD4 869 (24%) VL UND

Offline Incognito12

  • Member
  • Posts: 30
Re: I'm wasting away
« Reply #22 on: February 09, 2012, 02:37:21 AM »
Unfortunately smoking pot in this country carries a life sentence.
The gradual weight loss started when I became infected, so maybe it's par for the course.  As I've stated many times before, I cannot afford expensive tests at the moment.
Stay healthy
tb.

Offline brenner

  • Member
  • Posts: 90
Re: I'm wasting away
« Reply #23 on: February 10, 2012, 04:00:13 AM »
I was down to 115 pounds when I got diagnosed, and I was eating normally at that time.  Once my jeans fell off my waist, I knew something was up.  Once I started my meds, which was basically a week after dx, I slowly noticed the weight coming back on.  My jeans look fab on me again, and my butt has filled out again.  It's almost been a year for me now that I've been dxd, and I couldn't feel better.

You need to get a stool test done, no matter how costly it is.  Scrape your money and do it fast.  It sounds that something isn't ticking right in your plumbing department.  Don't eat junk food to put on weight.  Take care of your body, it's already been through enough trauma.  Please go see a doctor about this before you get really sick.  Just my advice.  Good luck and keep us posted.
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline TC

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Re: I'm wasting away
« Reply #24 on: February 10, 2012, 09:56:08 AM »
I am so sorry to hear that you are having problems with your weight loss.

Generally with the treatment - assuming that it works - you should start putting on weight soon.  Make sure that you try hard to look after yourself and eat well. 

If however you have any pain in your stomach then get medical help very quickly.

My partner of 13.5 years had a major pain there, and even though he saw a doc the next day - that was in June last year.  He had pancreatitis.  He went down to under 98 lbs, he was 6' 2" tall and looked like a bag of bones. 

He died a month ago today.

Offline Incognito12

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Re: I'm wasting away
« Reply #25 on: February 11, 2012, 07:13:58 PM »
I'm so sorry TC.

Offline LiveWithIt

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Re: I'm wasting away
« Reply #26 on: February 14, 2012, 10:17:18 PM »
Keep trying different meds til you find the right one.  When I was first diagnosed I had started wasting.  I'm usually a big guy, I'm tall, and I look skinny at 180 pounds.  I must have gone to about 155 and I looked awful, I lied and said I had stomach ulcers.  I couldn't eat, nothing seemed appetizing and everything I ate turned into diarrhea. Now about 17 years later I am heavier than I want to be and trying to lose 20 pounds.  There is hope. 

Also try those nutrient shakes like Ensure.     `

There is a medicinal form of marijuana called Marinol.  It helped me gain some weight too, but it made me light headed too. 
« Last Edit: February 14, 2012, 10:19:26 PM by LiveWithIt »
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline weasel

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Re: I'm wasting away
« Reply #27 on: February 15, 2012, 06:41:07 PM »
Unfortunately smoking pot in this country carries a life sentence.
The gradual weight loss started when I became infected, so maybe it's par for the course.  As I've stated many times before, I cannot afford expensive tests at the moment.
Stay healthy
tb.

 Try and see if you can get on Clonazepram .  It is a tranquilizer !

 I was skinny , NOT anymore ! 

 Clonazepram  Makes me an eating machine !

 I live in an area with no fast food . So my food  is good !   ,with fresh eggs , Fresh  Beef .

I cook most of our food , I drink huge amounts of what I hope is fresh water  :o

 I do eat some junk food .  Not daily thou !   

 May not be the right way to gain weight , But works for me .   

Without it I can barely eat  :-\

                                                                             Weasel  :-*
" Live and let Live "

Offline LiveWithIt

  • Member
  • Posts: 377
Re: I'm wasting away
« Reply #28 on: February 15, 2012, 07:41:03 PM »
Try and see if you can get on Clonazepram .  It is a tranquilizer !

 I was skinny , NOT anymore ! 

 Clonazepram  Makes me an eating machine !

 I live in an area with no fast food . So my food  is good !   ,with fresh eggs , Fresh  Beef .

I cook most of our food , I drink huge amounts of what I hope is fresh water  :o

 I do eat some junk food .  Not daily thou !   

 May not be the right way to gain weight , But works for me .   

Without it I can barely eat  :-\

                                                                             Weasel  :-*

Do you mean Clonazepam (no R)?  My mother used to take that at night as a sedative to help her sleep. 
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

 


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