Good numbers but wasting syndrome?

[notoutinilm]

I did a search before posting, found 4 pages of post but nothing that really nailed this one.

The quick skinny, and I use the word 'Skinny' literally is I am loosing 1.5 to 3 pounds a month and doc thinks it may be Wasting Syndrome.  Looking for anyone that has some insight or experience with this.

Here are the details....

Have been on meds for around 10 months now. Currently: Truvada, Prezista, Norvir and Marinol.

TCell count is 650 and VL is UD.

Weight has gone from 215 to 170 in 18 months.  There was a big jump the first two months (assuming that was seroconversion time) and since then I have been loosing 1.5 to 3 pounds per month.

I have had no appetite since what I assume was seroconversion and now take Marinol to help with the lack of appetite and uneasy feeling that I often get from eating.  I am being scheduled for an endoscopy and CT scan.  Should those have negative results, the conclusion is probably going to be wasting syndrome.

From what I have read, there is little known or understood about wasting syndrome.  It is clear that HIV has some strange effect on the body's metabolism and it is possible that just the fact one is positive, that the virus has flipped a switch in the body's metabolism setting that may not be reversible even with a UD VL.

Is anyone else dealing with this or know anything that may help with my home work?

Thanks and happy new years to everyone!

[wtfimpoz]

I've actually been rather worried about this too.  I've lost probably 19 pounds since my estimated conversion.  Nothing seems to slow the loss.  Not changes in diet, more or less exercise, initiation of treatment, or anything else.  Its actually kind of terrifying.  I've always had a ridiculously stubborn metabolism, and could only lose weight with extreme calorie counting and daily exercise.  Right now I'm still overweight, so its treated as a "good thing", and generally assumed to be the result of an increase in exercise, but this isn't normal for me.  I'm someone who historically has had to go to bed hungry every night to achieve even modest weight loss.  The "lose it" weight loss tool on my iphone had me limited to 1800 calories a day to achieve in one year what I've done in six months without dieting.  Suddenly, I've dropped like 3-4 inches around my waist, and the "new" pants I just bought a few months ago are already falling off.  Meanwhile, my only dietary restrictions are some fairly recent prohibitions against fatty foods.  My mother, who has always prodded me to do something about my weight, is asking some very pointed questions about how exactly I'm losing so much so quickly.  Its a bit like that Stephen King movie "Thinner".

My understanding is that HIV wasting affects muscles as much as fat though, and I haven't noticed a decrease in strength.  I'd be curious to know if there are any dead giveaways that differentiate wasting from normal weight loss. 

[notoutinilm]

I went from a 40" waste to 36" waste in two months.  Over the next few months I went to 34, then down to 32.  I had no gut what so ever when at 32.  That lasted a month and back to 34.  That said, I am still loosing weight but the gut is getting bigger.  That I would think means I am loosing muscle.

It does not matter how much I eat, I loose weight.  Although, it is a lot of work just to eat 2K calories a day.

I was also over weight and started a diet one week before the massive all too easy weight loss started.  The first week I was lucky to loose an a nanogram... then poof, "You too shall be skinny, make it so!", said the genie.

I understand the pointed question issue.  Wish I could give you some advice but I am in the same situation.

[Miss Philicia]

Perhaps anxiety and/or depression post-diagnosis are contributing to appetite suppression.  Have you been screened for this?

[notoutinilm]

Great stuff!  YES, there are many things that may be contributing to the perfect storm... Side effects of meds, stress, depression, anxiety, age, diagnosable stomach ailments, and for sure more....

Endoscopy and scans will be done in Jan some time.  After that we can knock the easy to understand problems off the list.  Sort of a strange feeling I have at the moment, "nothing good can come from the next doc visit...."

Luckily my Docs are outstanding!  Most everything that has not yet been ruled out by the scheduled Jan test has been discussed ad nauseum).

I am scheduled to meet with I think the head of the department on my next visit.  That will be after the Jan tests.

[Nestor]

Perhaps anxiety and/or depression post-diagnosis are contributing to appetite suppression.  Have you been screened for this?

This sounds reasonable to me.  I actually gained an unhealthy amount of weight in the year after my diagnosis, and I'm pretty sure depression was the root cause there.  My doctor said: "Some people gain weight when they're depressed and others lose weight.  We worry about both types." 

[notoutinilm]

In my case this issue is not psychosomatic.

[Miss Philicia]

How do you know that?

[notoutinilm]

I have discussed it with my doc.

In the past when I deal with stress or get bumbed, I eat... I gain weight.  That has been my life long montra... if you knew food like I knew food....

So, was just wondering if anyone is or has dealt with wasting syndrome or knows more then what I find on the quick google searches?

[Miss Philicia]

So, was just wondering if anyone is or has dealt with wasting syndrome or knows more then what I find on the quick google searches?

I had two separate instances of clinically diagnosed HIV-related wasting (late '99 - 2000 and late '01 - '03).  At the time my viral load hadn't been suppressed since infection, estimated to have been in 1988, and after being on HIV medication and having an actual AIDS diagnosis for six years.

[woodshere]

Before you get more wigged out, why not calm down and wait to see what all the test results are from the tests you are having in Jan.  Might be something completely unrelated to HIV.  Just because we are HIV+ doesn't mean everything that is wrong with us is related to that.....or at least I don't think it is.

[notoutinilm]

Before you get more wigged out, why not calm down and wait to see what all the test results are from the tests you are having in Jan.  Might be something completely unrelated to HIV.  Just because we are HIV+ doesn't mean everything that is wrong with us is related to that.....or at least I don't think it is.

I am not wigged out in any way.  The scans could return nothing, they could return all kinds of things.  For all I know I have an alien living in my gut....

Just trying to increase my knowledge on the subject matter.  Everything I find starts with little is known or understood.... here are some basic symptoms, definition and so forth.  Then they talk about ways to stop loosing weight.... a few of which have already been suggested by the doc.

I get the feeling from the doc they are guessing wasting but hopeful the Jan test results would prove otherwise.  There is no question something is wrong... maybe I am just allergic to work or computers

[notoutinilm]

I had two separate instances of clinically diagnosed HIV-related wasting (late '99 - 2000 and late '01 - '03).  At the time my viral load hadn't been suppressed since infection, estimated to have been in 1988, and after being on HIV medication and having an actual AIDS diagnosis for six years.

Do you know why you had two periods and not one continues?

Was it worse at the beginning of each period?

What did you do other than VL suppression to stop it?

[Matty the Damned]

Sounds to me like you've got the right idea. Could wasting syndrome, could be any one of a number of other things. You're getting tests done and reserving judgement until the results are in.

Have you considered a nutrional supplement like Ensure or Advera? Advera (if mammories serve) is formulated for us AIDS victims.

MtD

[Miss Philicia]

Do you know why you had two periods and not one continues?

Was it worse at the beginning of each period?

What did you do other than VL suppression to stop it?

I suspect it was really all one instance, or one underlying problem.  My doctor put me on testosterone injections, and I focused more on my eating/appetite steadily gaining the weight back the first time, then had to change HIV doctors due to some lame HMO issue and it took longer than expected, then I fired the doctor, and then also got really bad bronchitis.  So during that mess of several months I went without my twice monthly testosterone injections.  I'd gained enough weight back where I thought I would be OK but I wasn't, plus by then I'd also gotten laid off of work so I'd also lump heightened stress and anxiety into the mix.

But still the underlying issue for me (though this won't apply to you from what you said) was my long elevated viral load and flourishing of HIV in my digestive tract, as I'd also had substantial diarrhea issues from 1997 onwards.

As you can see there was a bit going on at one time.

[mecch]

I did a search before posting, found 4 pages of post but nothing that really nailed this one.

The quick skinny, and I use the word 'Skinny' literally is I am loosing 1.5 to 3 pounds a month and doc thinks it may be Wasting Syndrome.  Looking for anyone that has some insight or experience with this.

Here are the details....

Have been on meds for around 10 months now. Currently: Truvada, Prezista, Norvir and Marinol.

TCell count is 650 and VL is UD.

Weight has gone from 215 to 170 in 18 months.  There was a big jump the first two months (assuming that was seroconversion time) and since then I have been loosing 1.5 to 3 pounds per month.

I have had no appetite since what I assume was seroconversion and now take Marinol to help with the lack of appetite and uneasy feeling that I often get from eating.  I am being scheduled for an endoscopy and CT scan.  Should those have negative results, the conclusion is probably going to be wasting syndrome.

From what I have read, there is little known or understood about wasting syndrome.  It is clear that HIV has some strange effect on the body's metabolism and it is possible that just the fact one is positive, that the virus has flipped a switch in the body's metabolism setting that may not be reversible even with a UD VL.

Is anyone else dealing with this or know anything that may help with my home work?

Thanks and happy new years to everyone!

How old are you? How tall are you?
Are you sure you serocoverted about 18 months ago?

What explains the loss of appetite?  All systems are go except for this weight loss problem? I mean, you have normal energy and you have normal bowel movements, for example?

[notoutinilm]

How old are you? How tall are you?
Are you sure you serocoverted about 18 months ago?

What explains the loss of appetite?  All systems are go except for this weight loss problem? I mean, you have normal energy and you have normal bowel movements, for example?

I am 6'3", 47.

Are all systems go... a big no... 

I have massive bowel explosions from time to time (sometimes 7 times a day), the runs, constipation... normal  20% of the time and those are nice days if it last a whole day   This has been the case for 18 months now.  Started when I had the flue for 10 days, 18 months ago and lost 25 pounds in two months.  I then put back on a few pounds the next month and since then loose 1.5 to 3 every month.  Also, since the flue, which I assume was seroconversion, I have had the stomach issues, although they go from, oh yeah I have stomach issues, to, maybe I should not eat right now, better wait until I get home....  Hate to jinx things the past two days have been normal ones!

I never had stomach or weight loss problems until the flue 18 months ago.  In fact, I had just started a diet as I was over weight and needed to loose 20 pounds in a major way.

My energy is noticeably weaker.  The doc told me to start going to the gym and I did and that lasted for a few days.  At work I used to be able to pick up 50 pound boxes no problem.  Now 30 lb boxes seem heavy and I hurt afterwards.

Also, my waste went down from 40 to 32 and is now back to 34.  It now appears the gut is growing despite loosing weight... and that may be me forcing myself to eat more food.

Doc has run all kinds of test trying to figure it out... including chest x-rays.... did not ask why she did that?

Marinol stops me from being nauseous and does give me a bit of the munchies and is helping.

This may well be the perfect storm.  Solving this problem may be complicated by the possibility that more than one thing is going on....

While my VL is UD, I have found several articles addressing wasting in people with UD VL.  There seems to be a small number of people that when they become infected the body chemistry changes.

The doc does not think HIV meds I am on would cause the problem to this degree, and I hear this from the other docs I talk to as well.  I was on Atripla in the beginning and had the problem then as well.  I had to stop Atripla due to a terrible half body rash.

I am not worried, it has not been that bad of a diet so far.... but it is getting tiring and I need to get a grasp on it, and that is what I am trying to do....  I don't like surprises so trying to sharpen the brain up a bit.

Thanks to all of those that have chimed in so far

[notoutinilm]

A BIG THANK YOU! to all that have posted, especially those that are dealing with wasting syndrome and sent me private messages.

This forum is just great!

Good luck to everyone in the new year!

[mecch]

It does seem like 170 is quite slim for a man your height and age, and also for you in particular cause you are losing weight every month.
Its not clear if you are trying to diagnose yourself with wasting or if the specialist is going to help you get the bottom of this.  
I am not knowledgeable about HIV but on the other hand I am your height and your age, and just seroconverted less than 3 years ago.  I lost a TON of weight for 3 months until I went on HAART.  Then I got most of my energy back and gained weight to the point I weigh more than ever in my life. Having always been slim, I am stocky suddenly!  
Anyway about you, it just seems like your digestive tract has NOT been sufficiently repaired and/or has not adjusted well to HIV.  It really seems like you must bug your ID or any other specialist to treat this and get your digestion working again and feeling good.  It wouldn't matter if you are diagnosed with wasting or not - its still your digestion that needs critical attention.  
Are you on protease?  My gastro system didn't work as well on protease, but it never got as bad as you describe.  The Isentress and the Intelence before it, with both my digestion has been perfectly normal, I'd say, with no stomach upsets.  Could you see about possible switch to yet another combon that will be more gastro friendly?

 It seems to me rather than being worrried you are some rare case suffering from wasting with UD and only less than 2 years HIV+ - you need to take radical action to see specialists and a nutrionist to get your bowels working correctly.  

Does this advice help?

[Hoover]

This may be out there but have you checked for parasites?
I have had digestive issues for years before the HIV and it was always parasites.

Just a thought.

Hoover

[notoutinilm]

This may be out there but have you checked for parasites?
I have had digestive issues for years before the HIV and it was always parasites.

Just a thought.

Hoover

Good thought!  Unfortunately this is not the cause.... and yes, I would welcome this as the solution

[notoutinilm]

Anyway about you, it just seems like your digestive tract has NOT been sufficiently repaired and/or has not adjusted well to HIV.  It really seems like you must bug your ID or any other specialist to treat this and get your digestion working again and feeling good.  It wouldn't matter if you are diagnosed with wasting or not - its still your digestion that needs critical attention.

No bugging required, my Docs are great and they are giving this full attention.  Unfortunately fixing my digestive problems are just not as easy as one might think.  After the scans in Jan we will be able to rule out much of what we have not ruled out so far.  So there is a bit of a waiting game.  I am learning quite a bit from the private messages being sent to me from people who are suffering with what appears to be the exact symptoms I have at the moment.  The more I read these messages the more it sounds like I am the classic case of wasting with UD VL... but then, maybe the scan will show that I swallowed a very expensive diamond that is stuck in my digestive track and with a little nip and tuck I can sell that diamond

[mecch]

I guess you made it to this page:
http://www.aidsmeds.com/articles/Wasting_6937.shtml

[Billy B]

I went from a 40" waste to 36" waste in two months.  Over the next few months I went to 34, then down to 32.  I had no gut what so ever when at 32.  That lasted a month and back to 34.  That said, I am still loosing weight but the gut is getting bigger.  That I would think means I am loosing muscle.

It does not matter how much I eat, I loose weight.  Although, it is a lot of work just to eat 2K calories a day.

I was also over weight and started a diet one week before the massive all too easy weight loss started.  The first week I was lucky to loose an a nanogram... then poof, "You too shall be skinny, make it so!", said the genie.

I understand the pointed question issue.  Wish I could give you some advice but I am in the same situation.

Sorry you are having this problem but I can tell you where I work we have people on 2000 calories a day diet to LOSE weight. To gain weight we start with 2800 and go up from there.
Billy

[notoutinilm]

Sorry you are having this problem but I can tell you where I work we have people on 2000 calories a day diet to LOSE weight. To gain weight we start with 2800 and go up from there.
Billy

I am not sure where I came up with the 2000 number, I think that may be the really bad days.  It really makes no difference how much I eat... I can stuff myself... Thanksgiving dinner... I should have been the pig on the table it was soooo yummy.  24 hours later I am back to the weight prior to the porkus feedus meal.

I am working very hard to gain weight vis-à-vis food.  I am eating very healthy and find that whole wheat hangs around, processed does not want be friends.  While it is challenging at times to eat, and I do have bad days.... I am forcing myself to eat small meals every few hours and in between, fruit, cheese and so forth.  I also learned that by eating a big meal before bed I tend to keep on an extra pound for a day or so, but that could mean a 3am wakeup call.

[mecch]

I am not sure where I came up with the 2000 number, I think that may be the really bad days.  It really makes no difference how much I eat... I can stuff myself... Thanksgiving dinner... I should have been the pig on the table it was soooo yummy.  24 hours later I am back to the weight prior to the porkus feedus meal.

I am working very hard to gain weight vis-à-vis food.  I am eating very healthy and find that whole wheat hangs around, processed does not want be friends.  While it is challenging at times to eat, and I do have bad days.... I am forcing myself to eat small meals every few hours and in between, fruit, cheese and so forth.  I also learned that by eating a big meal before bed I tend to keep on an extra pound for a day or so, but that could mean a 3am wakeup call.

Sounds to me you won't gain weight until the digestive tract is stabilized. My heart goes out to you - I hope the doctors find some solutions for you soon.  Having shitty bm's (so to speak) is just so fucking annoying and tiresome.

[notoutinilm]

I guess you made it to this page:
http://www.aidsmeds.com/articles/Wasting_6937.shtml

Thank you very much!

[Lis]

I relate but have no answers... Ive lost 25LB in the last year ,Im on Mierinal, and I smoke pot, I get the munchies, and still cant eat very much.. when I do I puke it up about 4 hours later.. I have the muscle wasting... and a whole bunch of hanging skin

I should say that Ive been poz since 1986, got PCP in 2000.. and I  thought that wasting S was over.. MY BAD...

good luck... I pray for insight

[buginme2]

Good Luck!  Have you tried some marijuana?  It does give ya the munchies that could help with your queasiness.  Plus HIV does count as a qualified illness for medical marijuana if your in a state where its authorized.

[Ann]

Good Luck!  Have you tried some marijuana?  It does give ya the munchies that could help with your queasiness.  Plus HIV does count as a qualified illness for medical marijuana if your in a state where its authorized.

He has stated several times that he's already taking Marinol - which is pot in a pill form and is taken for the express reason of weight gain through increased appetite (without the potential lung damage).

Notout, I've had diarrhea issues for years. I've been investigated for everything from parasites to irritable bowel syndrome and a few things in-between, but nothing has turned out to be the cause. My doctor finally labelled it hiv-related. In fact, one of the reasons I'm still not on hiv meds is because in his experience, people like me with decent cd4s but bowel issues find that their bowel issues only increase after starting meds, regardless of what meds are used.

After much trial and error, including trying out immodium-type products and dietary changes, the only thing that controls my problem is dihydrocodeine and I take 150mgs daily. I'd rather not be dependent on an opiate, but it sure beats the hell out of living on the toilet or rolling around the floor in agony with intestinal cramps. I take regular breaks (when I know I don't need to leave the house - I'm so over crapping my knickers in public) so my tolerance level doesn't rise. I've been on the same dosage for years now as a result.

Before I found what works for me, I lost a fair amount of weight too and found it difficult to put back on, despite being someone who normally has to waist-watch. Since I started using the codeine, I've only had one episode of unexplained weight-loss (earlier this year) but what ever was causing that seems to have gone away as I've had to let my belt out a notch in the past few weeks.

Oh, and you might want to try drinking a daily Guinness or two or three or fifteen. Guinness never fails to put the weight on me.

[notoutinilm]

...After much trial and error, including trying out immodium-type products and dietary changes, the only thing that controls my problem is dihydrocodeine and I take 150mgs daily. I'd rather not be dependent on an opiate, but it sure beats the hell out of...

Before I found what works for me, I lost a fair amount of weight too and found it difficult to put back on, despite being someone who normally has to waist-watch. Since I started using the codeine, I've only had one episode of unexplained weight-loss (earlier this year) but what ever was causing that seems to have gone away as I've had to let my belt out a notch in the past few weeks.

Oh, and you might want to try drinking a daily Guinness or two or three or fifteen. Guinness never fails to put the weight on me.

THANK YOU!  I have added this to my discussion list for the next doc visit.

To all that have sent me private messages suggesting I see a doc, not sure how anyone can conclude I am not seeing doctors about this problem....  I am here looking for insight and for the most case this forum is nothing other than a life saver!  I shall for sure impress my docs on the next visit with questions, questions and more questions.... Thanks everyone again!

[Hoover]

Ann, the more you write, the more impressed I am with you!
A while back you listed ALL your lab numbers and I really learned a lot. That was one of the most interesting pieces of information I have read on this site!

On to the issues about this thread.

1. To avoid lung damage, we use a vaporizer for our marijuana. We are both allergic to smoke and it will kill our sinuses. The vaporizer heats the marijuana up to the temperature that allows the THC to vaporize but that temperature is below burning.
There is NEVER any smoke and all you get is the THC.

2. I lived with diarrhea for almost 5 years of living here in paradise and for a gay man that is not fun......
I had thought about getting on the meds, even with my CD4s climbing with each test, to see if I could get rid of the issues. Thanks for the information from your doc. I will stay the course and see where I land.
Maybe I will stay away from the beans and cabbage from now on.

Cheers,
Hoover and Dr. T

[BJS2011]

I did a search before posting, found 4 pages of post but nothing that really nailed this one.

The quick skinny, and I use the word 'Skinny' literally is I am loosing 1.5 to 3 pounds a month and doc thinks it may be Wasting Syndrome.  Looking for anyone that has some insight or experience with this.

Here are the details....

Have been on meds for around 10 months now. Currently: Truvada, Prezista, Norvir and Marinol.

TCell count is 650 and VL is UD.

Weight has gone from 215 to 170 in 18 months.  There was a big jump the first two months (assuming that was seroconversion time) and since then I have been loosing 1.5 to 3 pounds per month.

I have had no appetite since what I assume was seroconversion and now take Marinol to help with the lack of appetite and uneasy feeling that I often get from eating.  I am being scheduled for an endoscopy and CT scan.  Should those have negative results, the conclusion is probably going to be wasting syndrome.

From what I have read, there is little known or understood about wasting syndrome.  It is clear that HIV has some strange effect on the body's metabolism and it is possible that just the fact one is positive, that the virus has flipped a switch in the body's metabolism setting that may not be reversible even with a UD VL.

Is anyone else dealing with this or know anything that may help with my home work?

Thanks and happy new years to everyone!
I am the opposite. I couldn't gain an ounce for yrs. I have been on methadone and marinol 1 yr and have gained 30 glorious pounds.

[nownow]

I have good numbers for years but due to stress and AIDS-aging versus regular aging
i lost 10 pounds since April

I am eating a lot but that is hard to afford
and I take Ultradophilus from Jarrow with doctor-prescribed K-pax POWDER (not pills; vanilla flavor)

I put 2.5 pounds on. I also eat a way low saturated fat diet and i don't get up after eating for 4 minutes at least to let my body absorb the food.

I worry the gym exercise makes me burn off more than putting on weight,but I think that's where lean muscle weight might counter the burning off of subcutaneous facial fat and veiny arms since strating workouts beyond swimming)

I hope you gain weight too. I got the ultra dophilus from the ny buyers club cause it is the best price and helps maintain supplement to Rx budget

[when reading about wasting i read "the function of the mitochondrial electron transport system (ETS) is responsible for the production of adenosine triphosphate (ATP), the molecular source of energy that is used by the cell during cellular respiration. The ETS becomes overworked during times of excessive or hypermetabolic conditions, especially during times of wasting syndrome due to the body's increased need for ATP.

But for every molecule of ATP formed, free radicals are generated, too. If the necessary antioxidants are available (glutathione, catalase, superoxide dismutases), there is no problem. But these diminish or are overwhelmed by the generation of free radicals."

Do you take KPax powder or other absorbable multivitamin/antioxidant/protein/probiotic regiman to counter the 'free radicals'?]