Comments from people about lipodystrophy

[Guest guest]

From my survey

Displaying 1 - 250 of 353 responses

<< Prev

Next >>

Jump

Go >>

Comment Text

Response Date

1.

IT WOULD BE NICE IF THERE WAS MORE RESEARCH ON PREVENTING FACIAL/BODY WASTING AND WHY CERTAIN DRUGS EFFECT PEOPLE DIFFENTLY. IS THERE ANY DRUGS DOWN THE PIPELINE TO HELP PATIENTS WITH LEVEL 3-4 LIPOAPROATHY? IS THE FACIAL WASTE PERMANET, AND IF THE NEW DRUGS ARE CREATED, WILL IT BE PERMANET GAIN FOR THE FACE?

Wed, 10/3/07 8:01 PM

2.

I would like to have my face fill back in and have some padding in my butt so that I can sit without feeling my pelvis bones squashing my skin.

Wed, 10/3/07 5:26 PM

3.

Find out what the hell is burning up all that fat tissue that is now gone and show us how to try and replenish it if possible. The best I've been able to do has been my newly added supplement of Omega 3 fish oil capsules. It SEEMS that some of my facial wasting doesn't seem so bad. But that's all that I've done to try to lessen any more damage. Comparatively, my facial wasting is not as bad as some of the other guys around. But I think I stayed on Zerit/Epivir for a bit too long. HHhhhhhmmmmmmm. :-0!

Wed, 10/3/07 12:33 AM

4.

Promote FDA approval for TH9507

Tue, 10/2/07 11:12 PM

5.

I need something to stop the fat and lean me up with muscle instead. I have fatty breasts.

Tue, 10/2/07 11:05 PM

6.

Do you really know that lipodystrophy is mentally and physically debiliating and can affect your entire life? Why doesn't insurance cover fixing the problem that MEDS cause. Is it enough "just to be alive". Whether it's facial wasting (mostly for men) or fat gain in the face and neck and back (for women)- we want to fix it and for insurance to pay. The drug and insurance companies are making enough money to kill us! Why not fix our bodies before we f'n die! Love/Hate - the relationship continues.

Tue, 10/2/07 10:29 PM

7.

Find a cure!

Tue, 10/2/07 8:18 PM

8.

Can it be reversed? I am in the middle of a Silicon treatment and about to start Deca+Androgel. What's gonna happen with the silicon if I put weight on later on on my face?

Tue, 10/2/07 7:07 PM

9.

A more permanent & less expensive facial filler is needed. It feels terrible to notice people staring at the recesses in your face while speaking to them. It causes a social problem, since I don't like to go out in public in the daylight. The effects are less noticeable at night. I would gladly get the filler procedure done, but I cannot afford the doctor fees.

Tue, 10/2/07 5:32 PM

10.

Researchers need to stop assuming that lipodystrophy is a result of antiretroviral drugs. I have lipodystrophy even though I have NEVER taken anti-HIV meds. And for the record, my latest CD4 count was 632, my viral load was approximately 500, and my CD4 percentage was 39. In other words, my immune system is in good shape even without drugs. My symptoms started when my VL was *undetectable* and my CD4 count and percentage were even higher than they are now. Lipodystrophy is not, or not solely, a medication side-effect, and if researchers would stop the obsessive focus on which drugs might or might not cause it and start looking into the role *HIV* plays in causing the condition, we might have a better understanding. I live in San Francisco, and I have spoken with some of the leading researchers in this field (Dr. Carl Grunfeld, Kathleen Mulligan), and NO ONE is interested in people like me, although I suspect that we hold the real key to the source of lipodystrophy. After all, lipodystrophy afflicts HIV patients taking all sorts of different drug regimens. The *only* thing that all of us have in common is HIV infection. Logically, this would seem to suggest that HIV itself should bear a substantial share of the blame for the condition. Only research will reveal what HIV's role is, but to my knowledge, absolutely no investigation is going on in this area. Please note that some of the questions in your survey reflect the unfortunate misconception that lipodystrophy is all about drugs. As a result, I have had to answer questions that are completely inapplicable to my condition, since the survey refused to let me skip them. My answers are therefore skewed.

Tue, 10/2/07 3:08 PM

11.

HIV meds are metabolized very differently than other medications. It is wonderful that research continues, but maybe some focus should be placed on this issue. (ie. t20 being an injection twice daily)

Tue, 10/2/07 1:04 PM

12.

Bring back anabolic steroid availability for people with HIV!!

Tue, 10/2/07 10:33 AM

13.

Diabetes is difficult to manage along with HIV. I do not qualify for most studies because I have both HIV and diabetes.

Tue, 10/2/07 10:29 AM

14.

To keep up the good work it's greatly appreciated and to keep me updated

Tue, 10/2/07 10:05 AM

15.

I'm not sure that it is the disease, the medicine, or a combination both that causes this problem, though I think it probably is a combination of both. I believe future research will discover ways to alleviate lipoatrophy.

Fri, 9/28/07 10:58 PM

16.

what do I do to get my face and butt back

Fri, 9/28/07 1:18 PM

17.

when taking HIV medication you must do more exercise to reduce fat in your body

Thu, 9/27/07 12:15 AM

18.

they should research for hiv drugs that are less toxic and have less side effects, with all the support pouring in, they should be able to id the ingredient that causes side effects and device something that this ingredient go directly to its target virus or whatever. the point is, when we first had a tv, its a box with a concave glass and different buttons. now you already have plasma tv, or tv on your cell. they implved! not like the meds we have today, around 30 and yet, almost all are toxic

Fri, 9/21/07 10:21 AM

19.

i was exposed by someone who never took an aidsmed yet their body had all effects of lipodystrophy (buffalo hump, wasting in face, legs, butt). I have aquired the exact same body shape and have taken many aidsmeds. I think more focus should be on the disease not causing it not meds.

Tue, 9/18/07 2:05 PM

20.

Appeal for direct patient assistance. These procedures are so expensive that hardly any of us that have lived with this virus for twenty or more years can afford them.

Mon, 9/10/07 4:10 PM

21.

How does the metabolic system get changed to cause these types of symptoms? Does the drugs (or HIV?) cause the body to increase the aging process, causing some of the symptoms (perhaps increased belly fat, fat loss of extremeties)? Is there a way to replace lost fat from face and or extremeties?... if something turns the process on, something ought to be able to turn the process off, or reverse the process. Can we learn anything regarding "normal fat metabolism" from the experiences which many HIV patients are experiencing?

Wed, 9/5/07 3:43 PM

22.

NElson, my life changed 180° due lipoatrophy , not HIV. TRy to investigate more Uridine, please.

Mon, 9/3/07 4:38 AM

23.

I take viracept, ziagen, rescriptor since 1997 and my current combo seems not to cause any of these problems. Previously crixivan, ritonavir, d4t, ddi, ddc,azt all caused problems. I stopped crixivan, ritonavir, saquinavir, d4t, because I noticed body changes...not drastic, but starting. Amazed how poorly the existing system captured these horrendous side effects. We need to post mortem "the system" to assess what worked, what failed, what is still failing, what changes have helped. I feel that patients are more likely to REPORT side effects than overworked/time limited docs. Especially the HIV specialists are very burdened timewise. A pilot program could be set up for patient reporting . The current batch of new drugs???? has the system improved to capture the side effects? I feel our activist efforts need to a focus on capturing side effects...we cannot rely on pharmaceutical companies, and fda to date to do the job....the pharms because of profit incentive to NOT collect/report/communicate. FDA because of inadequate resources and committment to patients...seemingly more to pharma...or just bureaucratic incompetence. Has FDA adapted to computer/internet progress...years ago they were still behind technological progress in terms of using computers. Thanks for the feedback opportunity. We really need a post mortem on how D4T side effects were handling...reporting wise from all parties...pharma, docs, fda, patients....seems to me we patients knew several years prior to the system reporting to us. ....those unconnected patients suffered.. Thanks.

Mon, 9/3/07 12:18 AM

24.

Hopefully to develop medications that don't cause the problem, or something that can reverse it other than cosmetic surgery, which NO insurance company is going to pay for and 99% of HIV poz people cannot offord on their own.

Sun, 9/2/07 5:11 PM

25.

HELP !!!???!!!!! I live in Hawaii and I think that my Kaiser should cover reconstructive surgery for my facial wasting.

Sat, 9/1/07 4:45 PM

26.

Find a CURE!!!

Tue, 8/28/07 5:18 PM

27.

Doctors need to be more aware of this problem and take means to stop lipodystrophy. Perhaps more studies and new medicaations to solve this problem.

Sun, 8/26/07 8:34 PM

28.

More discussion: lipodystrophy (stomach fat) in particular; I'VE NEVER USED ANY HIV MEDICATION. I'm a little confused, because I've always heard that body (physical) changes only happen after using AIDS drugs? My usual flat muscular tummy, change throughout the day...sometimes there is large distending belly; other times, it is lopsided; in the mirror I try and stand correctly. thanks, brian

Sun, 8/26/07 12:01 PM

29.

Advice on diet, exercise and supplements to decrease belly fat and decrease arm and leg wasting and some info on my seriously veiny arms and legs. By advise, I mean more than the standard fewer calories, more exercise. I already do that!

Sun, 8/26/07 3:37 AM

30.

Research for something that can reverse the process of lypoathrophy

Sat, 8/25/07 2:00 AM

31.

Diet and exercize alone has not helped to lower my weight. Using testosterone allows me the energy to walk 3 miles daily. My belly fat does not reduce. Is there something that will help to metabolize viseral fat?

Fri, 8/24/07 7:35 PM

32.

Obviously there needs to be more of a push for research into the mechanism behind fat storage/loss/metabolism etc.

Fri, 8/24/07 4:57 PM

33.

ask about restoring muscle, and body fat, I love living, getting married and I want to love an live a happy life.

Fri, 8/24/07 3:35 PM

34.

It is terrific that HIV+ are able to look forward to living longer lives and being productive. It would be nice if we didn't have to deal with metabolic changes that may be related to the meds. If we do have to continue dealing with facial wasting I do hope that insurance companys or medical funding sources will realize the importance of self esteem/self image and one's health. I seem to have lipiatrophy and it is not really my appearance hasn't changed to much yet. My concern is glucose intolerance, and high cholesterol, tryglicerides.

Fri, 8/24/07 3:18 PM

35.

Besides medications and the disease that may contribute to the lipo issues what is being studied for women who are approaching or already in menopause? During menopause we tend to gain and nobody in the medical community seems to be looking at that as well. My GYN and HIV Dr say to exercise and eat less?!?!?! I fear I'm not eating enough and I work out 3 - 5 times a weeks yet I'm gaining weight. Both weight and cardio work.

Fri, 8/24/07 12:24 PM

36.

Why do they cause the belly fat to increase?

Fri, 8/24/07 11:43 AM

37.

I am still unsue as to whether slight chnge sin my face are the resultof natural aging or lioatrophy. I have never been able to find ANY information that deatiled (narrative or photos) the progression of lipo overtime. A longitundinal research effort that takes photos of research subjects over time would be very helpful for someone to determine if, in fact, they are experiencing this as a result of their HIV meds or becuase of something else.

Thu, 8/23/07 8:06 PM

38.

I do not know because I do not know how to describe what is going on with my body

Thu, 8/23/07 7:36 PM

39.

There needs to much greater care taken in the future development of HIV medications so as to limit, hopefully eliminate completely, these awful side effects. I incredibly difficult knowing you have AIDS and having to live with real physical discomforts but I honestly at times would prefer to live through an occassional bout of pneumonia or something similar than to hear about how great my labs are and then see a picture of me looking like a 90 year old man who's one eye blink away from death! If I hadn't been able to qualify for Sculptra I know I wouldn't have been able to live like that and yes, I would have killed myself. I see pictures of my gay brothers who are also suffering from this and it completely breaks my heart. None of us deserve this!!!!!! PLEASE DO SOMETHING!!!!!!!!!!!!!!!!!!!!!!!!!!!11

Thu, 8/23/07 6:09 PM

40.

HOw can the problem of wasting be reversed but still stay on life saving meds? How can we get insurence to cover reconstructive surgery -- it's not cosmetic!!!!

Thu, 8/23/07 3:55 PM

41.

Don't assume gay men are the same as the general male population. Compare body changes in HIV+ men to body changes in HIV- men, not to the general male population.

Thu, 8/23/07 1:04 PM

42.

My legs became so week that I could not walk up a flight of stairs or get up from a chair or out of bed so it is more than just your appearance. I have stopped the AZT but I hear it takes months to reecover. The research needs to find out exactly how this happens in the body so that it can be treated.

Thu, 8/23/07 11:08 AM

43.

That insurance should cover treatments and surgery to correct effects of lipodystrophy. Medicare and Blue Cross and Blue Shield of Florida will not pay for surgery to correct my gynecomastia. I cannot sit for very long without using a pillow due to wasting of my buttocks. Insurance and doctors pooh pooh my side effects, i.e., that's the cost of having HIV/AIDS.

Thu, 8/23/07 10:54 AM

44.

Types of exerise that would help the most. Most Atl. Trainers have no idea of what to suggest. I love sweets, but realize that sugar and flour are a no/no...for anyone who wishes to lose weight.

Thu, 8/23/07 9:50 AM

45.

why do you thinks this abonormal fat comes from, my stomach is awful and breasts with like a hard fat

Thu, 8/23/07 9:22 AM

46.

is liposuction a good ideal for people who have stomach fat and male breast probelm. thank

Thu, 8/23/07 9:17 AM

47.

I have been relatively lucky as my face has not been affected. My body changes of an enlarged belly and shrinking butt can be somewhat camoflaged by the right clothing. It is difficult at best living with HIV, managing meds, health insurance concerns, issues of dating and HIV disclosure, the stigma of living with HIV is still alive and well in gay white America, that those in-the-know can recognize PLWA's and makes it incresingly difficult to be part of the greater GLBT community. I think the meds and HIV itself as well as natuaral aging are ALL possible causes of Lipo issues and body changes. Not just the meds alone.

Thu, 8/23/07 9:16 AM

48.

that this is a medical/health issue and not cosmetic. that it causes neck pain,back pain,sleep apnea and breathing problems.

Thu, 8/23/07 8:49 AM

49.

To look for a solution that involve the use of more natural treatments in order to avoid other secondary effects and to point out to the medical insurance plans that this is a health issue also and not only a cosmetic matter in order for them to cover all or part of the treatment for lipodystrophy.

Thu, 8/23/07 8:33 AM

50.

WHY DOES THIS HAPPEN. IS THERE SOMETHING WE COULD TAKE TO AVOID OR SLOW THOSE PROBLEMS. ITS BAD ENOUGH WE HAVE THE DISEASE BUT THEN HAVE TO SUFFER WITH THE FAT LOSS, INCREASE BELLY FAT, ETC

Thu, 8/23/07 7:58 AM

51.

This is taking the quality of life away from people. i spen at least $20,000 to fix what the medication has done to me. That is just to look at myself in the mirror again and not cry and want to kill myself. Something has to be done!!!!!!!!!!!!!!!

Thu, 8/23/07 6:26 AM

52.

not a problem any more with proper choice of medication and proper nutrition. Wssting is permanent but nor too bad in my case. I have been able to reduce belly fat and now look better, feel better than in the past 15 years.

Thu, 8/23/07 6:10 AM

53.

What is the specific cause in these drugs for Lipo?

Thu, 8/23/07 5:44 AM

54.

I wish there was a product that could redistribute belly fat to other areas of the body such as the butt and face. A product that inhibits belly fat gain but enhances butt fat gain. That would be totally awesome!

Thu, 8/23/07 5:37 AM

55.

I HAVE COME TO LEARN THAT MEDICINES WITH AZT CAUSES MOSTLY THIS PROPLEM. WHICH MEDICINES DOESNT HAVE AZT. WHAT ABOUT THE NEW MEDICINES THAT ARE COMMING NOW WHAT ARE THE SIDE EFFECTS?

Thu, 8/23/07 4:27 AM

56.

I really don't know exactly because I'm trying to live with my problem. The thing is my current meds are doing a great job with my Tcells and VL. I don't have any problems except with veiny legs, arms and a big belly. I don't know if the big belly will cause any damage with my organs in a long run. What can I ask my doctor to check. Is there anything else I can do to prevent this

Thu, 8/23/07 1:57 AM

57.

Please help us find a reasonal,meaning something not to expensive,something without too many wierd side effects,an easy delivery system, long lasting way to fight lipidostrophy.

Thu, 8/23/07 1:54 AM

58.

i am not taking any medicins now i want to maintain my immune or body status like this it self.

Thu, 8/23/07 12:25 AM

59.

The meds extend your life, but turn you into a troll, afraid to come out from under the bridge.

Wed, 8/22/07 11:37 PM

60.

If it were possible to know long-range how these medicines will truly impact our health? I realize that the answer is an unknown that will be answered only with more time. The quality of my life is far more important to me than some notion of longevity. I have lived with AIDS since 1982, but at that time no one knew what we were dealing with... I started medicines [HART] later as I was not seeing my friends doing well with the medicines that were first available. I will continue with these medicines for now... I don't like the idea of being a guiena-pig within all this research and should things continue to change with my body shape + it's metabolic functions I will stop taking these meds. It is a choice + a chance that I am willing to take... I don't want to add more complications to my health than I have already endured over all these years. Ask reasearchers if there is a way to know if medications will cause these changes prior to having them released... it is easier to avoid a problem than it is to try and correct a problem after the fact. I do think the potential for side-effects will always be with us; as it is with all medications, it comes down to the severity of these side-effects and how they impact those using the medications. I thank you for creating a forum that lets our voices be heard. As far as I can tell a majority of people think that this is a treatable illness and that AIDS is no longer an epidemic or the big threat it once appeared to be; ignorance does support denial and denial appears to be the favored choice by many over awareness. Thank you-

Wed, 8/22/07 11:17 PM

61.

That they comconcentrate on finding a way to keep us HIV + persons alive with quality LONGER...with quality i stressed....

Wed, 8/22/07 9:26 PM

62.

The cost of all this is much to high for most to pay to change what has happend. The medication keeps you alive, and in doing so kills the way you look. I don't know how respond to this.I feel so shamed to let anybody see me / you in fear others will know you have HIV. It's hard to live this way too. I don't know the one thats worst.

Wed, 8/22/07 9:05 PM

63.

Does medicaid or medicare or White or ADAP pay for medication for wasting?

Wed, 8/22/07 8:19 PM

64.

My last appointment the doctor checked my thyroid, but I haven't heard back about the results yet. After I got out of the hospital, which was when I found out about being HIV+, I weighed 136lbs., now 10 months latter, I weigh220 lbs, but I have never weighed more than 175-180 in the past.

Wed, 8/22/07 8:12 PM

65.

I am glad to have the help i have. I haven't worked in a year due to the depression. If anything, be sure to have them ask more about the exhaustion, diharreah and depression. I think about just quitting the pills to see what happens.

Wed, 8/22/07 8:02 PM

66.

make injections or prescriptions to stop the lipodystrophy

Wed, 8/22/07 7:26 PM

67.

What can be done to reverse the effects....

Tue, 8/21/07 1:50 PM

68.

I dont even no what to ask for at this time, there is so little that has been done about it so far, so I guess I will set back and just wait and see, will there ever be a solution to it.

Tue, 8/21/07 1:06 PM

69.

Lypodystrophy is a huge problem for both men and women with HIV. It is more than a "quality of life" issue. Please help.

Mon, 8/20/07 6:22 PM

70.

What can be done to increase some fat on the butt and legs (my legs have become really thin); and the specific exercises that one can do to achieve that.

Wed, 8/15/07 3:05 AM

71.

It's not just about vanity. Every day my friends and family are reminded needlessly that I have a disease. I look far less healthy, and it scares people into thinking that they'll catch something from me, just from being in the same area. I get lonely so often.

Wed, 8/15/07 1:26 AM

72.

To find a consistent lasting product with little side-effects to treat facial lipoatrophy.

Thu, 8/9/07 2:07 AM

73.

I have no clue..I need you to tell me what is right for me to do to get myself back to how I was or at least close to it..It is a very hard and debilitating thing to go through mentally..Please HELP!!!!

Wed, 8/8/07 4:30 PM

74.

knowing the mechanism of the pathology. I think I have read that the mitochondria in fat of the torso loses its ability to create energy from the fat and that is why the fat accumulates there. i don't think they know what damages the mitochondria.

Wed, 8/8/07 11:01 AM

75.

I guess there is nothing researchers can do. The point is that one has got to take the medication if one wants to carry on living. The cost of it are drawbacks such as lipodistrophy and in some countries like mine (Portugal) one has got to pay for the treatment, i.e., to get rid of the stigma of aids pictured in the face. The price for it is shown in numbers: 3,400.00 €.

Mon, 8/6/07 1:22 PM

76.

That the problem is not minor and only cosmetic. It can be as serious to ones health as HIV itself.

Sun, 8/5/07 11:54 PM

77.

How to properly plan long term a balance between medications, natural wellness (exercise, how we eat, etc.) and what drugs to take when to minimize these debilitating side effects.

Sat, 8/4/07 9:20 PM

78.

what diet is best? what supplememnts are best? what treatments are the best? What execise is best. SPECIFICS. Too much conflicting info out there makes it even worse.

Fri, 8/3/07 9:27 PM

79.

etiology, prevention and treatment ned to be fully elucidated; what treatment that is available needs to be covered by insurance

Fri, 8/3/07 11:49 AM

80.

thanks Vergel. Pls let's put pressure on ins. co.s to start paying 4 this. We need more solutions to this. It keeps folks off the meds they need. I just figure this is better than being dead. But it REALLY marks u as poz.

Thu, 8/2/07 10:49 PM

81.

help financially, many of us are working poor, make too much to qualify for "free treatment" consideration, but have no insurance or have to pay such high insurance costs there isn't $ left to consider options for facial wasting

Thu, 8/2/07 5:40 PM

82.

Find fast a medicine to restore back the fat where it belongs,and not on my belly and crotch.Thank you

Thu, 8/2/07 5:25 PM

83.

we need treatments to eliminate the disfiguring effects of HIV drug treatments

Thu, 8/2/07 3:53 PM

84.

Researches for lypodystrophy needs are vital. Body changes due to this disordeer can make lives incredibly miserable. In my case I'm not bothered so much about big belly because it's not uncommon in general. Facial waste made me feel very bad but didn't change respect for myself and my social interactions. I believe it would have if I had not had it treated while still at a moderate stage.

Thu, 8/2/07 12:44 PM

85.

To help some of us financially for one- some lipodystrophy does not only require a shot of scuptra to fiull up and walk away we need reconstructive facial surgery! That and fillers! My rear buttocks look like I am from Biafra! I have no money to leagally fight these systems nor do I have any energy to do so! I really thought outside ther USA surgery was risky but financially worth it- and now see if your positive they want more money to serve your needs! Which is horrific in my opinion! So meone has to step in and assist us either through our USA health planb medicare caid whatever we get and to have them lessen the price for those of us that are forced into utilizing the medications for fillers- these do not even last making matters worse!

Thu, 8/2/07 12:38 PM

86.

To please work harder in reaching what's causing us to develop lipodystrophy and to look for an answer to decrease lipodystrophy in HIV+ patients. Thanks

Thu, 8/2/07 12:29 PM

87.

Find out how to reverse the lipodystrophy and then help to prevent the return of it. Find out how to prevent it in the first place. And have insurance companies and ADAP pay for the removal of the lipodystrophy in the stomach and in the breasts.

Thu, 8/2/07 12:24 PM

88.

More research needs to help define usage, quantities, and side effects of all lipodystrophy solutions. Exceptions must be made for access to those of us suffering with severe wasting.

Thu, 8/2/07 10:42 AM

89.

Every health care provider I have seen has downplayed the lipodystrophy issues I have and instead focused on maintaining an undetectable viral load, and keeping my T-cell levels higher. If all that western medicine can offer me is to keep me alive as a hump-backed, distended-bellied, giant-necked (from 16 inches to 23 inches in the last ten years), man-boobed, sunken-cheeked, flat-assed, impotent AIDS monster, I'm not sure I'm up to the challenge. I truly miss looking like a human being. I have always considered suicide to be an option with my AIDS diagnosis and find myself moving more and more in that direction as I am continually frustrated with any alleviation of my physical symptoms. My testosterone level before going back on testosterone therapy once again was 78 -- only slightly lower than that of Margaret Thatcher's. My partner of the last 11 years recently left me for a younger, HIV negative gay man, due in no small measure, I feel, to my body's change from that of a reasonably attractive gay man, to something that can haunt the dreams of small children as Quasimoto's understudy. I'm running out of reasons to keep continuing the good fight here.

Thu, 8/2/07 10:20 AM

90.

help......

Thu, 8/2/07 9:26 AM

91.

Zerit seems to be the largest problem of the drugs. Has Bristol Myers Sqibb helped in research to reverse lipodystrophy caused by their medication?

Thu, 8/2/07 8:55 AM

92.

Is there a way to prevent it? And, can it be reveresed.

Thu, 8/2/07 4:16 AM

93.

More research/ medication for belly fat and for loss of butt cheeks.

Thu, 8/2/07 12:32 AM

94.

Focus on the etiology of lipoatrophy; if it is indeed mitochondrial damage, then study the use of pharmaceutical grade uridine in patients without the concomittent use of Zerit, and Nucleomaxx, as well, without the use of Zerit. Prove to the insurance companies that the meds to stay well have side-effects that need to be taken seriously; fat does have a function in our bodies. thus, insurance companies need to be convinced to pay for fillers for the face, extremities, etc...If the meds caused the lipo, then by all means, have paid coverage to correct with fillers. After all, this would be less expensive than if folks refused to take meds. for fear of lipo, and then really end up in a lurch by ending up with frequent doctors visits or hospitalization due to non-compliance.

Wed, 8/1/07 11:20 PM

95.

Just that lipodystrophy is NOT just a "vanity" or cosmetic issue, it is a self esteem/self image, stress/anxiety, depression, and physical health issue that needs to be taken very seriously. Thank you for this !

Wed, 8/1/07 10:58 PM

96.

why is that some hiv'er get the extra stomach fat and some don't.I am a male and my breast is the worse than that i hate,please help.

Wed, 8/1/07 11:54 AM

97.

I think once we clearly understand what causes lipodystrophy/ lipoatrophy we need to find a way to reverse the process that causes it.

Wed, 8/1/07 11:44 AM

98.

finding if the meds or HIV are the primary cause and what is the mechanism of causation.

Wed, 8/1/07 11:07 AM

99.

Where can we locate a doctor to write a script for nandralone, since my Kaiser doctors wont do it?

Mon, 7/30/07 12:32 PM

100.

what type of services does insurance pay for like fillers for you face and butt?

Mon, 7/30/07 10:55 AM

101.

Where is research in terms of Lypo reversal? Is there new evidence to support the reversal of fat? what are the drivers of lypo reversal if any.

Mon, 7/30/07 6:17 AM

102.

Determine the real causes and effects of lipodystrophy and verify if patients are really being informed about it.

Mon, 7/30/07 4:45 AM

103.

Researchers need to tell us how to cope with changes in our body structures. It is either health or die in Africa. One weighs life rather than image

Mon, 7/30/07 2:33 AM

104.

to come up with something that can get rid of the belly fat, so i can be comftable in normal fitting clothes,not clothes that fit so big every,but my middle making me look twice as bad, and that makes me evenmore uncoftable. i just would like to look and feel pretty again. thank you for letting me tell you how i feel. mary

Sun, 7/29/07 11:15 PM

105.

What help is available for fat loss in the butt, without having to change HIV medications?

Sun, 7/29/07 5:54 AM

106.

what can be done for facial wasting and belly fat increase that is not expensive. The HIV meds are expensive enough.

Sat, 7/28/07 9:51 PM

107.

Please show more examples of women with lipoatrophy. I notice most photos show men only and women tend to be more sensitive about their appearance, especially the face. This is not a cosmetic issue. The progression of lipoatrophy will cause HIV patients to become ostracized from society so it should be classified as a medication and covered (at least partially) by health insurance.

Fri, 7/27/07 10:13 PM

108.

Discover a drug that re verses fat gain.

Fri, 7/27/07 9:05 PM

109.

not sure

Fri, 7/27/07 7:26 PM

110.

side effects from medication can effect the way you see yourself as they can certainly change what ur body appears to look like, which at times i get that drawn look and it's just another reminder that all is not well but after taking hiv for over 20 years i'm still here and so r alot of my friends so at least we're here to talk about it :) ..........life is good cya graham.......................

Fri, 7/27/07 6:21 PM

111.

Is there any solution to the changes in your body weight once the problem has begun?

Fri, 7/27/07 3:07 PM

112.

I need a substitute for D4T Zerit. It increases fat in my belly.

Thu, 7/26/07 9:02 AM

113.

I've been off HAART for 2.5 years. My lypoatrophy/dystropy has increased dramatically since I went off meds. Obviously the Protease (Viracept) and Combivir that I was on for 7 years permanently changed some funtion in my body (Mitochondria?). How do you change that back? The needs are great. If others are like me, you are forced to withdraw from society. I know people are trying hard to figure this out. Thank you! Neil from Massachusetts.

Tue, 7/24/07 11:48 PM

114.

I'm disgusted with the whole thing. I just stay in the house and avoid contact with people unless absolutely necessary. To me it's just a waiting game until it's all over.

Tue, 7/24/07 1:37 PM

115.

I've heard of people that are treatment naive that have lipoatrophy that have lived with HIV for a long time. I'm not sure that medication is the primary cause, but exacerbates it.

Mon, 7/23/07 10:42 PM

116.

My facial wasting make me look less than healthy and I do not want members of family and friends to see how bad I look. I've been told by a doctor who treated facial wasting, I might as well have AIDS/HIV tatooed on my forehead; and that other people with HIV and those who know of it can tell what my health status is. I'm heart broken looking in the mirror.

Mon, 7/23/07 7:57 PM

117.

I have had 4 heart attacks and I don't smoke I eat well and take statins. It's clear the meds "gunk" up blood flow and or vains ot should be standeed practice to add plavix or develope drugs that don't need norvir for boosting

Mon, 7/23/07 7:49 AM

118.

I know research is being performed and that some treatments are available. What would you suggest to your "every day" middle class person with facial wasting and veiny arms and legs that does not have the money to pay for expensive procedures? Is there any form of assistance for such cosmetic enhancements?

Mon, 7/23/07 1:37 AM

119.

everything already mentioned by others.

Sun, 7/22/07 10:05 PM

120.

I have observed the wight loss associated with dry skin nature and both of these cahnges will have psycological impact.It would be best if they can do on combination therapy of ART with substance that has even fat distribution. Thanks

Sun, 7/22/07 1:52 PM

121.

Stop referring to the treatments as "cosmetic." everyone accepts breast reconstruction as a part of cancer "treatment" - facial/body treatments for HIV should be similarly accepted as necessary and routine. I am tired of seeing Hollywood actors with HIV- keeping their HIV hidden (through expensive visits to Europe for non-FDA approved therapies) while the rest of us remain "marked" for everyone to see. bitter? you bet.

Sun, 7/22/07 8:38 AM

122.

Yes

Sat, 7/21/07 7:42 AM

123.

The face is the worst. I would love an affordable permanent facial filler. Then we'll work on the reduction of the "protease belly" and then the butt, then the arms and legs. Actually, I'm not doing too badly in reshaping my arms at Lazarus House. My legs are getting better, too, even though I'm the oldest client they have!

Sat, 7/21/07 1:31 AM

124.

just find ways to improve on what they already know.

Sat, 7/21/07 12:17 AM

125.

There needs to be something more affordable for people with hiv/aids symptoms such as this. My whole life changed and all I ever did was cry. I still am having issues but cant afford the $1800 shot to complete the process for my face. You guys have got to do something and make thsee more financially available. Maybe do some kind of sliding scale or something...PLEASE anything!!!!!

Fri, 7/20/07 10:05 PM

126.

I have no idea if this is germane to the question being asked, but I would be interested in knowing more about tingling or soarness on the bottoms of the feet and whether or not that may be associated w/liprodystrophy and some possible remedies if so, etc.

Fri, 7/20/07 8:24 PM

127.

Norvir caused buffalo hump and belly but it went away when I quit that med. I'd like to see research into finding ways to increase viseral fat on limps and buttocks.

Fri, 7/20/07 6:50 PM

128.

American society is very site conscious. If we look good, we feel good. It takes a lot of self esteem to overcome the image of the perfect body. Doctors prescribe psyche drugs, but the HMO's will not pay for counseling which would be more beneficial.

Fri, 7/20/07 5:03 PM

129.

why do lipodystrophy and lipoatrophy seem permanent?

Fri, 7/20/07 4:44 PM

130.

the blood lipids and blood sugar are controlled by metformin, and armor thyroid supplementation

Fri, 7/20/07 4:34 PM

131.

Find a cure for it that people can afford

Fri, 7/20/07 4:20 PM

132.

Help people with finantial solutions. I been taken Decadurabolin and helps alot. But i can't buy it because is ilegal and very spencive!!!

Fri, 7/20/07 3:35 PM

133.

We need HIV medications that do not have the side effect of lipodystrophy. I am currently on Reyataz (which is far better than the Crixivan and Kaletra with regard to lypodystrophy), Epivir, and Zerit. My doctor and I cannot find a suitable substitute for Zerit right now due to allergic reactions to Ziagen and Truvada. I have to take a cholesterol medication (Zetia). Too many side effects with the statin drugs. Thank you for allowing me the opportunity to take this survey. I hope it helps bring about a solution.

Fri, 7/20/07 3:02 PM

134.

It is easy to see that the newer POZ men that have never taken some of the drugs like AZT and so on do not have the wasting problem just look around

Fri, 7/20/07 12:17 PM

135.

Perhaps more research needs to be done about the effect of fat redistributing itself around major organs. How is the function of each organ enhanced/depleted because of fat?

Fri, 7/20/07 7:05 AM

136.

What would one do locally when she/he is at home to reduce lipodystrophy (Facial wasting)?

Fri, 7/20/07 4:35 AM

137.

Besides diet and excercise wwhat are other alternatives to treat lipodystrophy.

Fri, 7/20/07 2:22 AM

138.

The questions you've asked covered most ground I've been thinking. Its weird because you don't want to be pegged as HIV+ and lipo is like a big fat (no pun intended) (story of my life lol) Hello I'm different. They used to call me fat face when I was a kid, of all things, now... not so much. Be nice if the medicines came with referals to places that helped treat fat loss and gain. Thank you.

Thu, 7/19/07 4:55 PM

139.

what is the best exercise I can do to get to the fat below the skin, that is (i think?) visceral fat ? I know that there are 2 layers, one just under the skin and one that is deeper. Would it be possible to justify to the govt program prescription company's (I have medi-Cal)that it is an important part of our treatment to make a 'cheaper' injectable for women esp, to bring back their facial and butt fat loss, esp ? Thank you very much for the work you are doing, I do appreciate it greatly! Lori Y. (626) 964-4651. Please contact me if there are any clinical trials in this medicinal field going on currently in my area that you may know of now or in the future. My address: 2600 S. Azusa Ave. #132, West Covina, CA 91792

Thu, 7/19/07 2:40 PM

140.

We could really use some kind of funding to help us with these problems w/ lipodystrophy, perhaps something like the White funding for denatl work, etc.??

Thu, 7/19/07 2:33 PM

141.

I've felt such a sense of despair about it. my doctor actually said "What do you want me to do about it - be happy you are alive". I AM happy I am alive. But I dont want to survive all of this just to have a heart attack at 45 thanks to my meds.

Thu, 7/19/07 2:04 PM

142.

What are the said effects if any to having lipodystrophy.

Thu, 7/19/07 2:01 PM

143.

Check out what's going on and what to do. Neuropathy also.

Thu, 7/19/07 1:56 PM

144.

There should be some way to redistribute body fat to the correct areas. If fat can accumulate in the belly, there should be a drug that can move it to the butt, legs, face...

Thu, 7/19/07 1:55 PM

145.

more research about the belly fat and facial wasting.And my feet seem to have changed also,is that due to the medications too?My hands also have changed,my eyes seem to have sunken...is it all due to the medications?

Thu, 7/19/07 1:44 PM

146.

Not sure of the correct answers to the last 2 questions, I believe it's the toxic medication, but we need more reaserch.

Thu, 7/19/07 1:24 PM

147.

How can I get rid of the back fat? My veiny skinny legs have since regained a normal shape...but the back fat is permanent...regardless of exercise, diet or anything I've done....

Thu, 7/19/07 1:23 PM

148.

I would like to know if the new medication cause less lipodystrophy.

Thu, 7/19/07 1:01 PM

149.

Focus on new drugs that don't appear to cause lipodystrophy as badly. Encourage less expensive facial fillers; I would love to have that done but I can't afford it.

Thu, 7/19/07 12:45 PM

150.

Even with the Silicon 1000 you can still see the indentations on each side of my lower face. The physician states he cannot go that low on my face with the silicon. I need a product that would permanently fill that area but still look somewhat natural. The veiny legs/arms is an issue that I have not been able to address so I tend to wear clothes to conceal it. I feel it is a dead ringer for someone with hiv.

Thu, 7/19/07 12:36 PM

151.

Develop HIV meds that do NOT cause body changes..work on better treatments for body changes

Thu, 7/19/07 12:19 PM

152.

My doctor never informs me about any cosmetic help available...It is probably because of my age

Thu, 7/19/07 12:12 PM

153.

how can i get rid of it

Thu, 7/19/07 11:28 AM

154.

Nothing I'm sure they don't already know! The daily desire to gain fat and look normal; to be able to sit down for longer than 15 minutes without discomfort or pain, (not to have to check out restuarant/cafe seating before I take a table); not to have to always carry a sweater, even in summer, so I have something padded to sit on; but most of all to get rid of an appearance that is disproportional to my health status - not to look like a person with a terminal illness. Is there no option for a version of NewFill etc for the limbs and butt?

Thu, 7/19/07 5:37 AM

155.

The problems that we experience in our individually different ways are all too real and are, I firmly believe, attributable to the anti-retrovirals as well as HIV. Please research the causes and develop cost-effective ways to address the problems we experience. Thank you.

Tue, 7/17/07 9:51 PM

156.

Is it there any way of eliminating that side effect on AIDS medications? It is VERY expensive just trying to stay alive with this disease, then you add the cost of improving on your nutrition and finally you realise that, in spite of EVERYTHING you are doing, it is still not enough. Is there ANY AIDS medication that does not cause lypoatrophy or lypodistrophy?

Tue, 7/17/07 8:50 PM

157.

Try to decrease the side effects in future pills

Tue, 7/17/07 7:28 PM

158.

We need to find a way to help people with excess belly fat to take it off safely.

Tue, 7/17/07 11:57 AM

159.

I really don't know.

Mon, 7/16/07 8:18 PM

160.

not sure. more research and less toxic drugs seems obvious. more options would help

Mon, 7/16/07 6:20 PM

161.

find a solution for the side effects

Mon, 7/16/07 8:36 AM

162.

How to reduce visceral fat deposits?

Mon, 7/16/07 12:38 AM

163.

Lipo is not simply a "cosmetic issue". For many of us it is disfigurement resulting from HIV/meds, and is debilitating to various extents.

Sun, 7/15/07 11:33 PM

164.

I want to look better to feel better Doctors Know what it is but are reluctant to offer a solution.

Sun, 7/15/07 8:06 PM

165.

Sculptra seems to be the new FDA approved treatment for the disease, how can I access this treatment at no cost to me, since I cannot afford the present costs involved

Sun, 7/15/07 5:03 PM

166.

I only have wasting in the face. My muscle tissue & fat levels are OK in other parts of my body. AZT is the only current suspect drug that I am taking, in the form of combivir. should I request that my doctor take me off AZT, or will that help at all? I have researched the various types of facial fillers, but they all seem to have bad side effects, or are extremely expensive. Medicaid does not recognize that wasting can affect the body in very bad ways, especially in lowering self esteem. Something needs to be done, now!

Sun, 7/15/07 3:30 PM

167.

I'm tired of hearing that lipodystrophy is basically the same in both negative and positive populations. It's obvious to me that the meds and/or HIV cause this problem. I would like to see legislation enacted to force the insurance industry to pay for any current solution that returns our bodies to their pre-medicated form!

Sun, 7/15/07 2:06 PM

168.

I am on Epzicom and Reyataz. Parotid swelling and fat neck are not addressed at all or talked about. I wish there was more information on what drugs they think specically cause parotid swelling and large neck.

Sun, 7/15/07 1:23 PM

169.

The manufacturers or perhaps White should try to make available cost effective treatment options for those suffering with lipodystrophy. If a person is embarressed to be seen in public because of body changes resulting from their medications, then are the medications really improving the persons quality of life? If the person feels that they cannot participate in life because of how they look...then the end results of the medications are nill. They've gone from one bad situation into another that they feel is worse.

Sun, 7/15/07 7:10 AM

170.

Do prorease inhibitors(eg kaletra-liponovir)keep the fat loss/wasting continuing long after the "D" class drugs have been stopped? Would a treatment break give the body an opportunty to recover lost fat on limbs etc?What are the drugs currently in (phase)trials and what are they showing?

Sun, 7/15/07 7:04 AM

171.

Wish we had more drug options to deal with this issue.

Sat, 7/14/07 8:21 PM

172.

We need more funding, and more research

Sat, 7/14/07 7:18 PM

173.

There needs to be a lot more basic understanding of causes.

Sat, 7/14/07 4:38 PM

174.

WHILE THE SOLUTION OR THE REASON IS NOT FOUND, PLS HELP US TO TELL GOVERNMENTS THAT THIS ISSUE SHOULD BE TAKEN AS SERIOUSLY AS BREAST IMPLANTS FOR WOMEN WHO HAS SUFFERED WITH BREAST REMOVAL DUE TO CANCER SURGERY. THANK YOU.

Sat, 7/14/07 3:50 PM

175.

When will these issues be serious enough to be paid by insurance companies? How can researchers reverse this process?

Sat, 7/14/07 12:00 PM

176.

Is there are realistic possibility to reverse the fat loss process or once the fat is gone is gone for good?

Sat, 7/14/07 10:50 AM

177.

We need to reverse the subcutaneous fat loss and find anti-viral solutions that do not exacerbate the problem. We need health care coverage that provides support for facial wasting correction and liposuction when medically necessary to repair distorted bodies.

Sat, 7/14/07 1:28 AM

178.

actual etiology, drug or disease

Sat, 7/14/07 1:16 AM

179.

what are some safe, permanent solutions to this problem. Once it has developed, by what means can it be diminished/reversed?

Fri, 7/13/07 11:01 PM

180.

find out if it is possible to get back some fat into affected areas.

Fri, 7/13/07 10:25 PM

181.

For God's sake, FIND A CURE!

Fri, 7/13/07 9:42 PM

182.

Lipoatrophy is obviously very serious and finding the cause as well as ways to reverse it is important. Equally important for many of us, though, is a focus on lipohypertrophy in the form of buffalo hump, fatty buildup around the neck and head, and abdominal fat buildup. For some of us, the combination of lipoatrophy and lipohypertrophy seems to make us seem less seriously affected since the two mask each other to a certain extent. Is any research being done on people that have BOTH fatty buildup and lipoatrophy?

Fri, 7/13/07 8:02 PM

183.

Find out what causes facial wasting and get a cure.

Fri, 7/13/07 7:33 PM

184.

Insurance companies need to step up to the plate and cover at least a portion of treatment.

Fri, 7/13/07 7:27 PM

185.

sorry nelson, I just found out about the survey. not being affected but witness to many, i can only be attribute my good fortune to the meds i have been on since the beginning (Viacept and combivir/viread/truvada) the viracept and truvada my current, and my doc, dr. cimoch fountain valley, orange county, ca, us. thank you for your work. m. woods

Fri, 7/13/07 7:09 PM

186.

Please look into lipodystrophy as more than just a side effect to meds. I had this at age 27 before starting meds, so it isn't all because of meds. While the meds may speed progression, I'm convinced that there is something going on with the virus itself.

Fri, 7/13/07 6:38 PM

187.

Develop medications which do not cause lipodystropy.

Fri, 7/13/07 5:08 PM

188.

Neslon...Thanks for all your fine work! I am writing you from Rio where I just finished another group. Hope your Australia trip is good. P.S. Dr. Serra will not be attending this year. Best, Philip

Fri, 7/13/07 5:08 PM

189.

/there is a one to one corolation with visceral fat builld up and fat losss in limbs, face, buttocks, fat loss happens first, then years later visceral build up, it is in NO way like normal aging or fat build up, why don´t their studies reflect reality?

Fri, 7/13/07 4:39 PM

190.

Get more studies going. Look for lipo side effects during HIV medication trials.

Fri, 7/13/07 4:26 PM

191.

I don't really know what to ask. I suppose more research into stem cell and enzyme based treatments. I just read that German scientists have developed a "drug"? which hunts down the virus in infected T cells and destroys it. It sounds very promising; but will Big Pharma block it and berate it, etc. in order to protect profits. We will surely see. I hope for Manhattan Project type response to find a cure. It can be done; but then again; there are big bucks profits in treatments...but not in a cure. That's what I would tell them and ask; How and when, where, etc.

Fri, 7/13/07 3:18 PM

192.

How can we restore lost fat?

Fri, 7/13/07 2:59 PM

193.

denial is no solution, some nukes and pi's have shown body-composition changes well outside normal experience. Lipo is real.

Fri, 7/13/07 2:57 PM

194.

If they can make a drug to keep your dick hard why can't they spend a little time and money on making a drug to reduce or reverse the effects of HIV medications? Oh yeah, I forget, it's stright white guys that run drug companies and they would rather have sex than worry about the infected homos..I'm a little bitter too .

Fri, 7/13/07 2:29 PM

195.

Medications, fillers, plastic surgery, etc. should all be considered reconstructive, and not cosmetic, and thereby be covered by medical insurance.

Fri, 7/13/07 2:19 PM

196.

Speed up approval on fillers that people are having to leave the country to get & make them affordable & covered by insurance... If restoring a woman's breast is not considered cosmetic surgery, restoring someone's deformed face most certainly shouldn't be classified that way.

Fri, 7/13/07 2:04 PM

197.

Drop the cost and add it to insurance plans for any "restorative" procedures.

Fri, 7/13/07 1:44 PM

198.

Is there any way to get rid of "Crix Belly" short of liposuction, which I won't do? (I know someone who died from a staph infection brought on through liposuction.) I got rid of about half of mine, but the risidual just won't go away, despite an absurdly healthy diet and 7 hours a week in the gym.

Fri, 7/13/07 1:02 PM

199.

This problem affects medication adherence. After I have seen what it's doing to my face, I have considered the possibilty of pursuing strictly alternative therapies.

Fri, 7/13/07 12:35 PM

200.

Find out what in the Zerit causes the metabolic changes

Fri, 7/13/07 12:16 PM

201.

There needs to be a link between some of the medications and lipodystrophy. Years of taking Zerit caused me to lose body fat and I couldn't gain fat no matter what I ate. I don't think I look bad, but I do have vascular legs and arms, and have had to have my face filled. I went with silicone since it is a more permanent option since I can't afford to be doing this every few years.

Fri, 7/13/07 11:06 AM

202.

Well, how is this linked to the cholesterol/triglycerides problem. I had a heart attack 2 years ago and quadruple bypass surgery. I weighed 157 at the time (I'm 5'9"), exercised regularly, ate well. My surgeon said at the time he thought the extreme blockages were due to my HIV meds. (5 main arteries to the heart were blocked between 70-95%). I have noticed now that when I lose any weight at all, the facial wasting becomes more noticeable. That is the most distressing symptom. Ask the researchers to study why that happens, what drugs it is related to, and WHETHER IT CAN BE REVERSED. Thanks for your time and effort.

Fri, 7/13/07 11:05 AM

203.

More research needs to be done at the cellularlevel so we can stop the midocondrial destruction {if in fact that is what it really is.) We need to demonstate/justify to insurance companies that treatments for this are reconstruction and not cosmetic. As I understand it that is the key to getting payment. , I go to your site often and many times pick what is relevant for me. Missed your asking for the survey. Will keep a better watch and if anyway I can contribute to your work will be glad to do so. You have been a great resourse to me in the past and cont to be. Springer

Fri, 7/13/07 10:33 AM

204.

There need to be low cost filler alternatives for those of us that were damaged by the HIV meds. There are some options out there, but none are financially accessible to anyone unless you go to Tijuana or Brazil

Fri, 7/13/07 10:32 AM

205.

First, something to conteract the wasting which I would imagine involves finding out exactly what is causing it (which of the meds, or is it just the HIV itself?)

Fri, 7/13/07 9:53 AM

206.

I'm lucky, I don't have Crix belly, or buffalo hump. The medications that cause these side effects are horrible, intolerable medicine!

Fri, 7/13/07 9:53 AM

207.

I am of modest means. I cannot afford New Fill or any of the other remedeies. Cost is a major issue.

Fri, 7/13/07 9:42 AM

208.

Answers to metabolic syndrome. Better understanding of the mechanisms of this disease.

Fri, 7/13/07 9:32 AM

209.

They should researchf or more medicines which do not bring about lipodystrophy.

Fri, 7/13/07 9:10 AM

210.

What would be really helpful is something that would encourage providers to pay for remedies.

Fri, 7/13/07 8:37 AM

211.

Simply that more needs to be done. We need more than a band aide approach (such as fillers). We need something that can reverse the effects.

Fri, 7/13/07 8:01 AM

212.

I feel we realy need more research done on this issue. It is definitely caused by the medication.

Fri, 7/13/07 7:51 AM

213.

Address physical changes and not base acceptance in study on t-cells. A lot of us w/l these issues have low counts.

Fri, 7/13/07 7:49 AM

214.

Why can't Medicare help cover facial wasting treatment. In the long run, it would save money.

Fri, 7/13/07 6:47 AM

215.

Before HGH and Thera . . get approval for lipodystrophy (2-3 yrs?) there ought to be access NOW.

Fri, 7/13/07 6:40 AM

216.

Insurance pays women for implants to replace or surgery to reconstruct a breast which has been removed due to cancer. Why then aren't the insurance companies required to help restore our faces deformed due to illness and treatment which cannot be hidden. A missing breast can be hidden under clothing? Our faces cannot be, short of issuing chaldors.

Fri, 7/13/07 4:40 AM

217.

want to restore homeostasis so that lipids can be properly stored and utilized by the body

Fri, 7/13/07 4:32 AM

218.

I would hope that someone could find a way to restore my body fat content. I would also like to see the drug companies pick up the tab for the damage it has caused me physically and mentally.

Fri, 7/13/07 3:30 AM

219.

I'd hope that the causes of extremity fat loss and gain are being researched (stem cells maybe?) and soon there will be a way to return fat to our faces, arms, legs, butts and stop the "trunk accumulation"

Thu, 7/12/07 11:33 PM

220.

I started a Crixivan trial because I was failing on all drugs. I looked normal when I started. With in 3 months I was telling the administator that followed us that I was developing what I thought were varicorse veins. (turned out to be loss of fat in limbs) and swollen cheeks. The trial was blind and I could have received: nothing, Crixivan only or Crixivan & AZT & 3TC. When the year trial was over I had just received Crixivan only. Saved my life, but left me ashamed of my body. I never wear shorts anymore.

Thu, 7/12/07 11:32 PM

221.

i really don't have any questions.... sorry.

Thu, 7/12/07 11:27 PM

222.

We need to find the causes so that we are not just treating the symptoms.

Thu, 7/12/07 10:52 PM

223.

a cure to reverse the effects of lipodystrophy

Thu, 7/12/07 10:33 PM

224.

Continue to seek solutions that might reverse mitchondial loss; assure that new therapies do not cause fat wasting or accumulation; advocate for universal access to lypolytic medications (GH) and facial (and buttock) restoration procedures.

Thu, 7/12/07 10:08 PM

225.

just do it!...stop the bull shit and get to the bottom so we can fix it....

Thu, 7/12/07 9:44 PM

226.

Please request that clinical trials are made available to as large a population as possible.

Thu, 7/12/07 9:39 PM

227.

Radiesse seems to work well for me in terms of longer lasting effect. The sculptra only lasted a short time before my face started to go back to that sullen look (sunken cheeks). I would hope some day they can come up with something for the buttocks.

Thu, 7/12/07 9:36 PM

228.

It worries me. It depresses me and shames me. I feel less of a person and I don't know what to do. Everything interconnects...physical,mental, and health. Help us. Please.

Thu, 7/12/07 9:25 PM

229.

what is the best way to prevent facial changes..and are changes reversible? other than this one issue i really am doin well. i work out and am still employed full-time...but looking tired concerns me.

Thu, 7/12/07 8:54 PM

230.

are there drug-less, naturopathic approaches to the problem?

Thu, 7/12/07 8:47 PM

231.

Gained back most fat in my legs arms and butt, but face did not improve. Can anything be done to help my face to return to normal, without expensive fillers?

Thu, 7/12/07 8:26 PM

232.

My main problem is belly fat.

Thu, 7/12/07 8:20 PM

233.

help.can't you all see what disfigurement theses medications are obviously causing

Thu, 7/12/07 7:53 PM

234.

My HIV meds pushed me into diabetes, and I now have to take insulin twice daily to control my glucose. Noone seems able to explain just how that happened. I am happy to be able to take insulin after my diabetes diagnosis because before the diagnosis, I thought my HIV was progressing rapidly and that I was dying from wasting ultimately caused by glucose levels of over 600!

Thu, 7/12/07 7:33 PM

235.

HOw to stop fat wasting & redistribution in belly, face, extremeties.

Thu, 7/12/07 7:06 PM

236.

Possible natural reversal of lipoatrophy (limb veinyness) after suspected cause is removed (e.g., changing Rx)

Thu, 7/12/07 7:00 PM

237.

if we could reverse these side effects it would help us with our mental/physical well being.

Thu, 7/12/07 6:51 PM

238.

My case is mild me and my doctor can only tell. But it would be wonderful to find a way to reverse the effect using a medication.

Thu, 7/12/07 6:32 PM

239.

comparative randomised study between New-Fill and Bioalcamid

Thu, 7/12/07 6:24 PM

240.

Please tell them that "that look" (the hollow face) is one of the most debilitating side effects of HIV/AIDS.

Thu, 7/12/07 6:04 PM

241.

Whether there ever be a pill to melt the visceral belly fat and increase under the skin fat.

Thu, 7/12/07 5:55 PM

242.

What the Hell is going on with my body? I'm losing weight, then I balloon up. Then I have no fat under my skin and it all goes to my stomach. Then it stays there and I get new subcutaneous fat so now I look swollen. This shit is driving me crazy. People actually say the rudest things.

Thu, 7/12/07 5:53 PM

243.

My doctor is expresses doubt that exercise and diet can effect in high LDL and triglycerides. I want to try diet and exercise first. He is pushing meds. I am looking for research on the effect of exercise and diet on high LDL and triglycerides.

Thu, 7/12/07 5:37 PM

244.

What can be done to prevent further wasting of limbs and buttocks and what can be done to correct the problem

Thu, 7/12/07 5:26 PM

245.

The insurance industry should support and/or continue to support treatment for lipodystropy.

Thu, 7/12/07 5:22 PM

246.

Find a cure! It's been more than 20+ years, let this not become a 'Jerry ' marathon $$$$. More health insurance coverage is needed to advocate for full mediacal coverage to correct lipodystrophy

Thu, 7/12/07 5:12 PM

247.

Work needs to be done to find an effective, reasonably priced and permanent solution.

Thu, 7/12/07 4:58 PM

248.

More research on safe treatment to mitigate.

Thu, 7/12/07 4:51 PM

249.

The fat accumulation on the upper stomach around your internal organs: Can it be remove? How? Any medicines to lessen the accumulation? How dangerous is liposuction there? Any programs doing research?

Thu, 7/12/07 4:37 PM

250.

Is it possible to reverse lipdystrophy?

Thu, 7/12/07 4:33 PM

Displaying 251 - 353 of 353 responses

<< Prev

Next >>

Jump

Go >>

Comment Text

Response Date

251.

Is there any realistic chanse to actually restore subcutaneous fat after fat ceels have been damage/or are dead because of HIV medications?

Thu, 7/12/07 4:31 PM

252.

We can put a man on the moon, spend 12 $billion a month to fight an unjust war,but no money to find a cure to aids lipo and all kind calamities.RIDICILOUS

Thu, 7/12/07 4:28 PM

253.

In my case I was taking D4T for years with no signs of wasting at all. Then a very stressful life changing event occurred and my stress level seems to have triggered my fat loss. I believe I would have never suffered any fat loss if my stress level had remained very low.

Thu, 7/12/07 4:11 PM

254.

What are the consequence of a high level of triglycerides on the organism ? Are triglycerides really able to obstruct little capillaries and provoque osteonecrosis of the hip, for example ? What medical exams should be done in the case of high triglycerids ? Thanks.

Thu, 7/12/07 4:10 PM

255.

In my case the wasting is minor, if I drink plent of fluids (water etc) it isn't as noticable. I put down that I'm taking AZT, I'm taking Trizivir which has AZT in it.

Thu, 7/12/07 4:03 PM

256.

Find out what definately is causing it, and find a way to stop this horrible side effects. What's the point of staying alive if you look like a freak?

Thu, 7/12/07 4:02 PM

257.

It's as serious as any OI or HIV itself.

Thu, 7/12/07 3:59 PM

258.

What is diet and what is the affects of HIV medications.

Thu, 7/12/07 3:52 PM

259.

Find ways to speed up approval for treatments that are available in Canada and Mexico and Europe. I was basically homebound for several years due to the effects, my quality of life was quite bad. I lost about 5 years of my life due to lipodystrophy.

Thu, 7/12/07 3:50 PM

260.

Develop a product that is affordable and/or insurance friendly for facial and butt reconstruction. I do believe the disease itself is the main problem, accentuated by the drugs and genetics. We need too look at lipodystrophy/lipoatrophy

Thu, 7/12/07 3:50 PM

261.

While the veiny arms and legs I can live with, the loss of face and butt have had as big an impact on me and my self-image as any other result of having HIV. I lost most of my hair clients as my cheeks and temples sunk in. SOme thought I was on drugs while others knew I was sick with something. Facial wasting in particular has left me feeling vulnerable and obvious and recognizable as living with AIDS. When can we have a medically-justified, permanent facial filler? And what about filling my butt?

Thu, 7/12/07 3:50 PM

262.

It's great to live with HIV, as opposed to dying from AIDS, but I also value my appearance.

Thu, 7/12/07 3:44 PM

263.

Ask them about studying the effects of low dose GH.

Thu, 7/12/07 2:31 PM

264.

How to reverse it nutritionally, not that they'd know.

Thu, 7/12/07 2:20 PM

265.

check on the density of the fat ...

Thu, 7/12/07 1:35 PM

266.

Lipo is VERY disheartening. Inasmuch as any remedy is not in sight, an affordable alternative to the very expensive cosmetic procedures should be made available or insurance companies and Medicare should cover these treatments.

Thu, 7/12/07 12:56 PM

267.

research needs: can you come up with something that doesn't require an injection? financial needs: don't let the insurance companies and pharmaceutical companies charge us an arm and a leg so that we can't afford help for our health problems.

Thu, 7/12/07 12:47 PM

268.

The stress of knowing my appearance shows my HIV status makes socializing that much more difficult and I find that I am becoming more and more isolated. I have also found out that no amount of exercise will help resolve the lost of muscle mass in my butt.

Thu, 7/12/07 12:26 PM

269.

To fund the appropriate research something can be done & to remember that these problems can lkead to sef-esteem issues resulting in psychotherapy which in the long run could be a lot more costly.... (I am also an RN)

Thu, 7/12/07 12:21 PM

270.

The facial wasting and distended stomach have been devistating side effects (both physically and emotionally) of the HIV medications for me. I'm not sure what I could add to the directions that the researchers need to take, but I do pray that they find a way to reduce or eliminate this horrible condition of lipodystrophy and lipoatrophy that so many of us suffer from.

Thu, 7/12/07 11:26 AM

271.

It is imperative to fix high triglycerides and metabolic syndrome for patients on HIV therapies. Research is needed into what the actual changes in lipodystrophy are on a cellular level, as well as what causes these changes and how they can be counteracted or reversed.

Thu, 7/12/07 11:25 AM

272.

What is the link between Zerit and facial wasting/veiny arms and legs ? What is the link between Crixavan and high cholesterol/triglicerides along with big belly ?

Thu, 7/12/07 11:07 AM

273.

Try to determine the cause, whether HIV or the meds and work towards a systemic reversal rather than cosmetic fillers

Thu, 7/12/07 11:01 AM

274.

I've always had vericose veins (even prior to HIV). Last year, I reached the point where I had my saphenous(sp?) veins in both legs oblated (totally successful). I just found out from my vascular surgeon's office that Aetna insurance through Emory University, here in Decatur/Atlanta, is still denying payment. In the meantime, my vascular surgeon has advised me that a second set of proceedures to oblate/remove additional, painful veins should be done soon. However, if Aetna maintains its position, additional work can't be undertaken, since I simply don't have the funds to pay for the work.

Thu, 7/12/07 9:36 AM

275.

let people know sculptra works, its expensive but i recommend it. mark

Thu, 7/12/07 9:23 AM

276.

Fat loss and fat gain were not only dramatic, but rapid. These were obviously pathological, not related to "aging" or some benign process. For example, at the time of losing facial and limb fat, a large (nearly 2cm) lipoma which I had had for 25 years in my left forearm completely disappeared within a two month period. While that was one cosmetic plus for lipoatrophy, it was obviously not coincidental to the other fat changes. My cheeks sunk in and people commented on this, so it was not simply my own perception. A supra pubic fat pad and a protruding navel (which had previously been a deep navel) appeared at the same time. Even though my weight was stable, I had to increase my pants size to accommodate the gain in belly fat.

Thu, 7/12/07 9:11 AM

277.

I know Zerit is thought to be the culprit but my facial fat actually increased while I was on Zerit.

Thu, 7/12/07 8:33 AM

278.

To please provide a both injectable sluptura followed by a silcone smoothing program to eliminate the bumpyness after multiple injections over a longer period of time. A full face is nice as long as it doesn't look like a bag of marbles and note 5-5 massage is a good start but hardly makes a perfect or natural soft surface.

Thu, 7/12/07 8:33 AM

279.

I am 64, often symptoms are difficult to differentiate from the natural ageing process and HIV and medication. I have COPD and Chronic Arteriorsclerosis. Both occurred since taking HIV meds, but other factors probably involved.

Thu, 7/12/07 7:46 AM

280.

What may help it or even help prevent this problem. Also, being HIV+ this problem should be covered by insurance companies.

Thu, 7/12/07 6:18 AM

281.

N/A

Thu, 7/12/07 12:53 AM

282.

People are NOT aware of the affect body change has on the functioning of HIV+ folk. You are completely healthy, managing your medication, and people ask you in horror what is WRONG??? Doctors tell you just to deal with it. You fear people will guess you're positive, in contexts where that would NOT be good.

Wed, 7/11/07 11:27 PM

283.

Find something that will fix these problems permanently.

Wed, 7/11/07 11:25 PM

284.

Ways to decrease belly fat.

Wed, 7/11/07 11:11 PM

285.

For the most part, I try to be thankful that I'm still alive 11 years after diagnosis...the cosmetic issues are troubling to me, but not worth killing myself over. I sure would like to be able to wear shorts again, and not have people wonder what's up with all those protruding veins in my legs. (Keep up the good fight, My Friend)

Wed, 7/11/07 10:33 PM

286.

Is anything being developed for veiney legs?

Wed, 7/11/07 9:59 PM

287.

longer lasting, permanent solution

Wed, 7/11/07 8:23 PM

288.

I HAVE VEINY LEGS/ARMS AND FAT LOSS IN THE BUTT... ADD TO THAT MY BELLY FAT.... ON MY FACE, I HAVE SWELLING AND RUNNY PATCHES WITH ACME PROBLEMS ARE THESE CONNECTED TO FACIAL WASTING..???

Wed, 7/11/07 7:38 PM

289.

we (med takers) need to find a med (another f***ng med) to ameliorate the affects on our mitochondria. i would take it.

Wed, 7/11/07 5:08 PM

290.

Researchers need to emphasize that the bodily changes that occur either by HIV or drugs is a medical problem, not cosmetic and that the corrections that need to be made are justified and should be reimbursed by insurance.

Wed, 7/11/07 1:04 PM

291.

exactly what drugs are causing it, why, and how can it be reversed

Wed, 7/11/07 12:34 PM

292.

(a) Find a way to reverse the process of lipoatrophy ( Discover which ART regimen is the best to prevent lipoatrophy while suppressing VL well © Explore low cost ways to restore facial and butt lipoatrophy (d) Examine genetic, gender, racial differences in incidence © Expand studies of the molecular mechanism of the HIV protein Vpr and its effect on lipid metabolism (d) Discover pharmacologic ways to protect mitochondria

Wed, 7/11/07 12:19 PM

293.

I think it can be both medication and long term survivors of HIV. I'm no longer taking any of the suspected medications but am still showing signs of lipodystrophy and lipoatrophy. I get so tired of hearing the doctors say, There is nothing you can do about this because if you try and have it removed it will just return. Obese people have gastric bypass surgery, we are just told that we need to learn to live with it as though our feelings don't really matter. I've even been told I should be greatful that I'm still alive. I am greatful to be alive, but I don't want to become Merric (elephant Man) before I die either.

Wed, 7/11/07 12:16 PM

294.

I think definitive answers to questions 21 and 22 need to be found.

Wed, 7/11/07 12:04 PM

295.

If it's due to mitochondral toxicity, ultimately it's going to be fatal, no?

Wed, 7/11/07 10:25 AM

296.

a cure for it...it is so hard on your life and living...

Wed, 7/11/07 10:19 AM

297.

At times, esp. early on with the facial wasting and stomach expansion, I felt like I was a growing monster. I've had children point to me when shopping. My waist went from 32" to 36" in two months with no change in diet. Even after acquiring new clothes, I keep having to adjust my pants so they don't fall below my waist. Anyone who thinks the wasting of your butt and face and who thinks that your body looking like a asymetrical pear does not result in depression, reclusiveness, collapsing self-esteem, and feelings of hopelessness, is delusional.

Wed, 7/11/07 10:03 AM

298.

Since I got off d4t a few years ago (thanks to your early activism ) and also started taking more relevant supplements - my lipo has diminished to the point where it is no longer a concern of mine. I have never had to take drugs for BP or diabetes after 20+ years with aids and the last 11 years on meds. I am glad I decided to spend my money on supplements rather than have to spend it later on getting goo injected into my face - like some of the most vocal "experts" on your list (JB) appear to have done and advise others to do as well. To each his own.

Wed, 7/11/07 9:52 AM

299.

feeling "disfigured" sets up a quest to be "restored" to normalcy. This is a medical condition. Insurance should cover things that offer reasonable results.

Wed, 7/11/07 9:43 AM

300.

Find ways to ameliorate the effects of medication side affects.

Wed, 7/11/07 9:40 AM

301.

I'm actually more interested in lipoatrophy.

Wed, 7/11/07 8:03 AM

302.

i don't want cosmetic surgery.....i just want to look normal....how can you reverse this....and researchers and doctors should help convince the insurance companys to help with the cost of looking normal....its only human

Wed, 7/11/07 5:55 AM

303.

when will pharmaceuticals produce meds without side effects? at least caring about the effect of stigmatisation on us caused by the side effects. what resources could people without wealth have to minimize lipoatrophy and wasting....?

Wed, 7/11/07 2:35 AM

304.

I'm looking forward to medical insurance to pay for the Sculptra treatment.

Tue, 7/10/07 11:15 PM

305.

Access to information rules; publicize specificly which medications are likely to cause/intensify problems

Tue, 7/10/07 9:35 PM

306.

1. How to avoid these problems in the first place 2. Medications or other products that will reverse lipodystrophy and lipoathrophy.

Tue, 7/10/07 6:55 PM

307.

What are the possible long term side effects of Bio-Alcamid, PMMA and New Fill. i.e. how will fillers look as we age, 5-10 years after fillers have been injected.

Tue, 7/10/07 6:53 PM

308.

Is there any research being done on reversing lipodystrophy and lipoatrophy without liposuction or fillers?

Tue, 7/10/07 4:56 PM

309.

seems like all bases have been covered again and again.

Tue, 7/10/07 4:50 PM

310.

it is psychologically and socially devastating. It also has significant vocational impact.

Tue, 7/10/07 3:37 PM

311.

We need to know the link between over stimulation of the Humoral(B-lymphocyte)component of the immune system and Lipoatrophy/Lypodystrophy. Also, why does Lipoatrophy/lipodystrophy/SyndromeX continue to progress for years after all HAART meds are discontinued

Tue, 7/10/07 3:30 PM

312.

I think researchers know what the problems are... I wish the health care system fully understood and responded appropriately to how @#$%^ & ^ & & ! debilitating these problems are to a person's self-image and quality of life.

Tue, 7/10/07 2:09 PM

313.

It is important that lipoatrophy be looked at separately from lipohypertrophy - fat gain in the belly. I think research demonstrating the deleterious physical and psychological effects of both syndromes would be helpful in obtaining reimbursement from private and government health insurance plans. I think the need for such research in the area of lipatrophy is somewhat more pressing, as there are probably more people affected and there are treatments available now. It is less clear what treatments might be available for belly fat gain, but it is important to prove a connection between the fat gain and either infection with HIV or antiviral treatment, as one prominant study appears to show no such connection.

Tue, 7/10/07 1:11 PM

314.

People need both medications that do not cause lipodystrophy. But for those of us who have had to take and may have to take these meds in the future, there needs to be afforadable treatments for reconstruction that insurance will cover.

Tue, 7/10/07 12:58 PM

315.

Finding a drug that will reverse the condition and one that will prevent it for those that don't have it. Develop antivirals that don't have as many side-effects. Provide data to insurance companies that this is a medical condition and that the treatments are not cosmetic.

Tue, 7/10/07 12:38 PM

316.

What is needed for facial wasting is a treatment that ALL can afford and that ALL can get the office visits paid for in addition to the assistance programs paying for the injectables. Not all of us can fly to Brazil, Mexico and Canada for treatment. I've considered leaving this group because of this.

Tue, 7/10/07 12:23 PM

317.

Knowledge exists relative to certain HIV meds causing lipoatrophy. Meds need to be developed to reverse that activity and those meds known causing it need to be discontinued.

Tue, 7/10/07 11:52 AM

318.

It is a very unnecessary side effect, when it is hard enough living with HIV+ and the painful physical side effects are bad enough, but the mental pain is almost too much. It is time to find HIV Meds that do not have these side effects.

Tue, 7/10/07 11:14 AM

319.

We are spinning our proverbial wheels until we understand the subcellular mechanisms and causes of lypoatrophy. Plus whoever figures that out will probably get rich treating obesity.

Tue, 7/10/07 11:06 AM

320.

I maybe wrong, non of my Black HIV+ friends, receive or educated on other things that help. Treatments like Nandrolone, Oxandrin or recombinant human growth hormone. They would give us megestrol or Marinol. That tends to produce weight gain by increasing FAT. My is great, but refuses to treat my wasting by these treatments. I am a straight black Hiv+ male, and I can't get answers. HELP! judges150@...

Tue, 7/10/07 10:35 AM

321.

Want proof that the hiv meds are responsible for lipodystrophy.

Tue, 7/10/07 10:33 AM

322.

It is hard to believe that Medicare will not cover ANYTHING that has to do with trying to treat or at least hide these effects of EXTREME disfigurement caused by NO BUTT whatsoever (it hurts to even SIT) and the frightening effect of facial wasting that makes you look like a skeleton and "AIDS Victim".

Tue, 7/10/07 9:46 AM

323.

find a remedy to reverse it, to stop and to prevent it in the first place.

Tue, 7/10/07 9:11 AM

324.

Can facial wasting be reversed w/o implants or fillers? If so, how?

Tue, 7/10/07 8:49 AM

325.

This is a big problem, physically and psychologically and we need help. Anything that may help needs more clinical trials to be opened across the country.

Tue, 7/10/07 8:37 AM

326.

Would like a medicine that counteracts lipodystrophy, brings triclycerides to where they should be normally for our diets and does not cause diabetes.

Tue, 7/10/07 8:36 AM

327.

Lipoatrophy and lipohypertrophy are completely ruining our lives. At least with 'buffalo hump' you can have liposuction, with wasting you can have filler but with the distended belly there so far is nothing. Let's hope the TH9507 trials are effective.

Tue, 7/10/07 8:30 AM

328.

find a real and viable solution

Tue, 7/10/07 7:48 AM

329.

I would like to know what steps to take or options there are in treating my lipodystrophy to increase my overall health and quality of life.

Tue, 7/10/07 7:44 AM

330.

Increase research, the answer to WHY this happens should be known by now and FIX IT I WANT MY FACE, LEGS and BUTT BACK

Tue, 7/10/07 6:26 AM

331.

I'd like to know whether buffalo hump might reverse over time, or what options are available for removing it. Thanks for all of your efforts.

Tue, 7/10/07 6:20 AM

332.

there needs to reconstructive procedures covered by insurance. we need to find how to reverse this disfiguring process

Tue, 7/10/07 2:17 AM

333.

Honesty, and stop protecting the so called experts who have denied the truth about what causes lipodystrophy.

Tue, 7/10/07 1:08 AM

334.

What's taking so long getting Bio Alcamid approved in the USA?

Tue, 7/10/07 12:09 AM

335.

to please try to find the root of the problem and provide something (non fillers or implants) to reverse it. If this is not possible, the best posiible products(fillers or Implants) for reconstruction should be free as well as doctor fees. to advocate for this.

Mon, 7/9/07 11:59 PM

336.

Do people who use supplements have less atrophy? Ppar gamma and PI's?

Mon, 7/9/07 11:04 PM

337.

how can you naturally get back the fat lst in butt, face, arms, legs

Mon, 7/9/07 10:52 PM

338.

there are millions of people that seek a cure for this

Mon, 7/9/07 10:45 PM

339.

What options are in the works right now regarding Lipodystrophy or new HIV meds/treatment that could reverse or cut down on body fat and body chances? How long will it take before we start seeing new, better and accessible options?

Mon, 7/9/07 9:59 PM

340.

To find out what the root of the problem is.

Mon, 7/9/07 9:43 PM

341.

Find a solution, and get the insurance companies to pay for RECONSTRUCTIVE procedures in the meantime. Find a cure for this, not more drugs to treat it so big pharma can profit off of my illness even more than they already have.

Mon, 7/9/07 9:16 PM

342.

Please seek medications without these side effects. Please supply meds that can help reduce/reverse these side effects.

Mon, 7/9/07 8:58 PM

343.

If medications are stopped, will the lipodystrophy reverse itself? Will I ever look normal again?

Mon, 7/9/07 8:51 PM

344.

Companies are liable, they should assume responsibilty for their effects. Yes am alive and well, but at times wonder why and what for when i look in a mirror; that's on bad days.... generally i can and have to live with it. The extent i have grown and evolved as a human being is due to being hiv+, but hard to "face" the world sometimes when i look ill or strange in their eyes.

Mon, 7/9/07 8:28 PM

345.

Get insurers to cover some treatments instead of saying they are cosmetic only; tell them we need healthy permanent solutions to the lipodystrophy issues. Thanks

Mon, 7/9/07 1:11 PM

346.

Scientific validation of need for lipohypertrophy treaments (GH, liposuction & other surgery, etc) so that payers cannot claim that they are "cosmetic" and will be forced to cover them

Sun, 7/8/07 9:29 PM

347.

I am not sure if my increased body fat around my waist is natural aging (love handles) or a result of my medications. I am spending money for a personal trainer to reduce my body fat (33%). Am I wasting my money? Are my meds contributing to my body fat?, can fat be reduced at all with excercising?

Sun, 7/8/07 6:11 PM

348.

They need to isolate what causes the changes in body fat, whether it's wasting or excess fat build up. Many in the gay community (Straight as well). For me having some facial fill was a mericle in terms of how my psyche changed. I now have a life again. Currently I have my High blood and chlorestal under control, but it's dure to exercise and added fish oil.

Sun, 7/8/07 2:59 PM

349.

Best to you . Thank you for all the time you put into keeping members informed and on top of things. You truly are a blessing. Cheers, Hans-Krishna

Sun, 7/8/07 12:56 PM

350.

new medication or methods for lipodystrophy

Sun, 7/8/07 10:34 AM

351.

Correct the question options about fillers uses as many if not most have used multiple fillers. Ask specifically about whuch drugs they feel caused the problem to guage preception. Ask for what they think the solutions are to cross check answers with others answers. Al Benson

Sun, 7/8/07 10:23 AM

352.

Lipo related side effects are indeed a cause for concern for both long term physical and mental health for positive people. I appreciate that these drugs have extended my life, but lipo problems have also affected my daily living and social interaction. This attitude may not be easy to relate to without experiencing it first hand, but it should be taken seriously. I have a virus with a number of mutations and my PCP and a specialist both urged taking Combivir (with AZT) to minimize the chance of developing resistance to Truvada as well as the other drugs in "salvage" regimen. Until such a time when a good number of new drugs are approved, which under ideal circumstances would work for me, I feel stuck with AZT and fat loss. And my doctor won't prescribe steroids and as he is the best doctor in my area, I'm stuck without that option, too.

Sun, 7/8/07 10:20 AM

353.

We need to find out how to develop medications for hiv that do not do this, and to find maybe a medication that stops it while taking the hiv medications, and to find out which hiv meds do this the worst.

Sun, 7/8/07 10:04 AM

Regards, Vergelpowerusa dot orgSee what's new at AOL.com and Make AOL Your Homepage.