Living and Coping with HIV Related Lipodystrophy - Pt. 1
Posted: Sat Sep 06, 2008 8:51 pmMy Journey: Living and Coping with AIDS Related Lipodystrophy, Part 1
As a 13 year survivor of HIV and generally subborn ox, over the last few years I have been very proactive in my treatment. It isn't that I don't trust my physician as an HIV specialist, it's just that with all the constant breakthroughs and advances in treatment, I like to do my part to stay informed on what's new. This is actually a running joke with my physician and my friends, since to them I always seem to be trying something new to either give me more energy or to combat AIDS related premature aging. My main interest, though, lies in manipulating and preventing side effects, of which I now have many. Like others out there, my body has responded in a bizarre manner to immune system reconstruction after having been severely suppressed by a very high viral load and almost non-existently low CD4 count prior to diagnosis.
While there is no actual cure for AIDS in sight, we are living in a time where we are fortunate to have the ability to network electronically with others to share and compare strategies in standing our ground and not giving up or in to HIV/AIDS in order to keep us high-functioning and to make our lives as pleasant as possible. I am excited to share my experience with a severely deforming phenomenon -- lipodystrophy, which basically presents itself as appearing to redistribute fat from some areas of the body to others.
My earliest sign of lipodystrophy, sometimes referred to as "lipo", appeared two years ago as fat accumulation at the back of my neck. My dress shirt neck size literally went from a 15-1/2 to 18-1/2 in a matter of months! Soon after my noticing this, studies were released announcing that while medications may aggravate lipodystrophy, it does not occur in all patients, even those on the same meds. The study went on to say that there is no known cure or prevention other than liposuction, which is not a permanent fix and cannot always be performed successfully due to visceral (belly) fat accumulating around the internal organs in some patients.
I searched tirelessly online for more concrete information regarding lipodystrophy to find that there is actually very little known about this disorder or why we are seeing more of it in HIV survivors. We're living longer and new complications are beginning to appear that weren't seen before. The most common explanation for it is that those of us who suffer from lipodystrophy are those who would be prone to a slowing metabolism and belly fat anyway. What a slap in the face! This obviously doesn't explain the rest of what is going on in conjunction with the neck and belly fat, but I'll go into that more in a minute.
A few months after seeing the changes in my neck, I noticed that I, myself, was getting an increase in belly fat, despite no change in eating habits or activity level. Having always considered myself "almost good looking" and being an ex-gogo boy, I still had some remants of the attitude and vanity from my heyday. I trotted my vain ass to the local gym and got a membership immediately. No way was I going to let this happen. I was not about to get all big and fat without trying or by just letting it happen! So, I learned as much as practically possible about cardio workouts to try and combat these bodily changes the old fashioned way. I sweated and stomped away on treadmills, elliptical machines and even did a bit of resistance training in hopes to boost my metabolism... after all, I was pushing 30, so it couldn't hurt.
Unfortunately, many of us who suffer the effects of lipodystrophy also see an atrophy or loss of fat in peripherals -- arms, legs, cheeks, and most disappointing, the keister! Yes, it's true. My once gorgeous bubble butt slowly melted away even to the point that it had become very uncomfortable sitting in a hard chair. Yeah, hard to believe! Now, it isn't back the way it was, but through countless squats, lunges and other gluteral workouts, I have managed to build up enough muscle to cosmetically mask much of the fat loss and I can now once again comfortably sit in a wood chair! Much cheaper than having the controversial and potentially dangerous surgical reconstruction. My ingenuity and perseverance paid off.
The combination of simultaneous fat loss and fat gain in unwanted areas of the body makes correcting both tricky, though, at least for me! Lose too much weight in hope of getting rid of the belly and you've made your skinny arms and legs look that much worse. Trying to gain weight to refill arms, legs (and everything else Mother Nature has decided to let the air out of) allows your belly to get bigger. You can imagine my frustration. No matter how hard or how frequently I worked in the gym, nothing really looked good or even relatively balanced.
It was then that out of curiosity I began looking into medications and supplements in hope that I could find something that could help the issues of fat loss and fat gain at the same time.** Common sense told me that I was experiencing something with an obvious similarity to Cushing's syndrome, so I began researching medications for insulin resistance and metabolic disorders outside of an HIV setting.
I took my findings to my physician, who informed me that one of the meds I was considering, Metformin, an anti-diabetes drug, had at one time actually been studied for AIDS related lipodystrophy, but the findings were relatively inconclusive. To see for ourselves, my physician agreed to write me a prescription. It is an inexpensive med, so I decided to give it a shot. While the results were not Earth shaking and are difficult to measure, after six months, I feel reasonably sure that Metformin has made a slight improvement in my overall appearance in regard to the effects of lipodystrophy. I experienced no noticeable side effects from the medication. I saw this as one step forward toward my goal.
What I am most excited to share are the results I have seen from over the counter health supplements. After seeing some benefit from the Metformin, I added 1,500 mgs/day of each L-Carnitine and flush-free Niacin. Within one month, I saw change and after four months, the appearance of lipodystrophy has diminished by approximately 50%. For me, that is significant. Recently, I tested my progress by allowing two weeks without either the L-Carnitine or Niacin (but continued the Metformin) and found that the lipo began to come back (or was more noticeable at least) by the end of the second week. This leads me to believe that the supplements were actually helping to promote healthier metabolism of fat in my body.
I am considering increasing my administration of each (L-Carnitine and Niacin) to 2,000 mgs/day, but have not yet completed my research on the possibility of negative effects from such high doses. Should I decide to go forward with this idea, I will post my results. For now, at 1,500 mgs/day of each, I am happy to see progress. Progress is progress! Both of these gems can be found in the supplement aisle at Target (I do not believe Wal-Mart carries L-Carnitine).
During my experiment, I also maintained strict adherence to a daily multi-vitamin, natural vitamin E (for skin), glucosamine (for bad knees), and glutamine (to aid in post workout muscle recovery). I made no real changes to my food intake or daily activity. I just focused on continuing to still eat relatively clean and get daily exercise.
Since the end of my experiment, I have recently cut out virtually all sweets and fatty foods, allowing these only as pre-workout carbs for energy (love those Little Debbie snack cakes!). It is my hope that this additional step will prove to be beneficial in my journey to minimize the appearance of lipodystrophy. I have also added creatine and amino acids as a post-workout shake now that I am finding myself once again (many years later) graduating beyond the bunny slopes at the gym. I'm proud to say that my shoulders have outgrown the shirts I wore during my sickest days. Maybe now I can start focusing on regaining that 50 pounds of muscle I lost during AIDS wasting four years ago!
I've long come to grips with the fact that I have AIDS and that there is nothing I can do about that, but I refuse to stop fighting for my life so that I may stay as healthy as possible, and for as long as possible. If I can keep myself looking relatively good, then that's nice too. After all, I did say I was vain. For once, that has been an asset. Hopefully, someone else out there may benefit from my experience. I encourage all of us to share thoughts and ideas on general health and wellness. Information is useless unless it is shared!
Ox
**Always be sure to check with your physician before starting any new medications or a new exercise routine.
As a 13 year survivor of HIV and generally subborn ox, over the last few years I have been very proactive in my treatment. It isn't that I don't trust my physician as an HIV specialist, it's just that with all the constant breakthroughs and advances in treatment, I like to do my part to stay informed on what's new. This is actually a running joke with my physician and my friends, since to them I always seem to be trying something new to either give me more energy or to combat AIDS related premature aging. My main interest, though, lies in manipulating and preventing side effects, of which I now have many. Like others out there, my body has responded in a bizarre manner to immune system reconstruction after having been severely suppressed by a very high viral load and almost non-existently low CD4 count prior to diagnosis.
While there is no actual cure for AIDS in sight, we are living in a time where we are fortunate to have the ability to network electronically with others to share and compare strategies in standing our ground and not giving up or in to HIV/AIDS in order to keep us high-functioning and to make our lives as pleasant as possible. I am excited to share my experience with a severely deforming phenomenon -- lipodystrophy, which basically presents itself as appearing to redistribute fat from some areas of the body to others.
My earliest sign of lipodystrophy, sometimes referred to as "lipo", appeared two years ago as fat accumulation at the back of my neck. My dress shirt neck size literally went from a 15-1/2 to 18-1/2 in a matter of months! Soon after my noticing this, studies were released announcing that while medications may aggravate lipodystrophy, it does not occur in all patients, even those on the same meds. The study went on to say that there is no known cure or prevention other than liposuction, which is not a permanent fix and cannot always be performed successfully due to visceral (belly) fat accumulating around the internal organs in some patients.
I searched tirelessly online for more concrete information regarding lipodystrophy to find that there is actually very little known about this disorder or why we are seeing more of it in HIV survivors. We're living longer and new complications are beginning to appear that weren't seen before. The most common explanation for it is that those of us who suffer from lipodystrophy are those who would be prone to a slowing metabolism and belly fat anyway. What a slap in the face! This obviously doesn't explain the rest of what is going on in conjunction with the neck and belly fat, but I'll go into that more in a minute.
A few months after seeing the changes in my neck, I noticed that I, myself, was getting an increase in belly fat, despite no change in eating habits or activity level. Having always considered myself "almost good looking" and being an ex-gogo boy, I still had some remants of the attitude and vanity from my heyday. I trotted my vain ass to the local gym and got a membership immediately. No way was I going to let this happen. I was not about to get all big and fat without trying or by just letting it happen! So, I learned as much as practically possible about cardio workouts to try and combat these bodily changes the old fashioned way. I sweated and stomped away on treadmills, elliptical machines and even did a bit of resistance training in hopes to boost my metabolism... after all, I was pushing 30, so it couldn't hurt.
Unfortunately, many of us who suffer the effects of lipodystrophy also see an atrophy or loss of fat in peripherals -- arms, legs, cheeks, and most disappointing, the keister! Yes, it's true. My once gorgeous bubble butt slowly melted away even to the point that it had become very uncomfortable sitting in a hard chair. Yeah, hard to believe! Now, it isn't back the way it was, but through countless squats, lunges and other gluteral workouts, I have managed to build up enough muscle to cosmetically mask much of the fat loss and I can now once again comfortably sit in a wood chair! Much cheaper than having the controversial and potentially dangerous surgical reconstruction. My ingenuity and perseverance paid off.
The combination of simultaneous fat loss and fat gain in unwanted areas of the body makes correcting both tricky, though, at least for me! Lose too much weight in hope of getting rid of the belly and you've made your skinny arms and legs look that much worse. Trying to gain weight to refill arms, legs (and everything else Mother Nature has decided to let the air out of) allows your belly to get bigger. You can imagine my frustration. No matter how hard or how frequently I worked in the gym, nothing really looked good or even relatively balanced.
It was then that out of curiosity I began looking into medications and supplements in hope that I could find something that could help the issues of fat loss and fat gain at the same time.** Common sense told me that I was experiencing something with an obvious similarity to Cushing's syndrome, so I began researching medications for insulin resistance and metabolic disorders outside of an HIV setting.
I took my findings to my physician, who informed me that one of the meds I was considering, Metformin, an anti-diabetes drug, had at one time actually been studied for AIDS related lipodystrophy, but the findings were relatively inconclusive. To see for ourselves, my physician agreed to write me a prescription. It is an inexpensive med, so I decided to give it a shot. While the results were not Earth shaking and are difficult to measure, after six months, I feel reasonably sure that Metformin has made a slight improvement in my overall appearance in regard to the effects of lipodystrophy. I experienced no noticeable side effects from the medication. I saw this as one step forward toward my goal.
What I am most excited to share are the results I have seen from over the counter health supplements. After seeing some benefit from the Metformin, I added 1,500 mgs/day of each L-Carnitine and flush-free Niacin. Within one month, I saw change and after four months, the appearance of lipodystrophy has diminished by approximately 50%. For me, that is significant. Recently, I tested my progress by allowing two weeks without either the L-Carnitine or Niacin (but continued the Metformin) and found that the lipo began to come back (or was more noticeable at least) by the end of the second week. This leads me to believe that the supplements were actually helping to promote healthier metabolism of fat in my body.
I am considering increasing my administration of each (L-Carnitine and Niacin) to 2,000 mgs/day, but have not yet completed my research on the possibility of negative effects from such high doses. Should I decide to go forward with this idea, I will post my results. For now, at 1,500 mgs/day of each, I am happy to see progress. Progress is progress! Both of these gems can be found in the supplement aisle at Target (I do not believe Wal-Mart carries L-Carnitine).
During my experiment, I also maintained strict adherence to a daily multi-vitamin, natural vitamin E (for skin), glucosamine (for bad knees), and glutamine (to aid in post workout muscle recovery). I made no real changes to my food intake or daily activity. I just focused on continuing to still eat relatively clean and get daily exercise.
Since the end of my experiment, I have recently cut out virtually all sweets and fatty foods, allowing these only as pre-workout carbs for energy (love those Little Debbie snack cakes!). It is my hope that this additional step will prove to be beneficial in my journey to minimize the appearance of lipodystrophy. I have also added creatine and amino acids as a post-workout shake now that I am finding myself once again (many years later) graduating beyond the bunny slopes at the gym. I'm proud to say that my shoulders have outgrown the shirts I wore during my sickest days. Maybe now I can start focusing on regaining that 50 pounds of muscle I lost during AIDS wasting four years ago!
I've long come to grips with the fact that I have AIDS and that there is nothing I can do about that, but I refuse to stop fighting for my life so that I may stay as healthy as possible, and for as long as possible. If I can keep myself looking relatively good, then that's nice too. After all, I did say I was vain. For once, that has been an asset. Hopefully, someone else out there may benefit from my experience. I encourage all of us to share thoughts and ideas on general health and wellness. Information is useless unless it is shared!
Ox
**Always be sure to check with your physician before starting any new medications or a new exercise routine.