POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on April 11, 2007, 10:18:27 am
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When we are talking about HIV-related problems versus those associated with aging?
I know the lumps of fat that are making it tough to turn my head and now touch the back of my ears are part and parcel of lipohypertrophy. I know the belly I have grown also is a part of this.
But is the pain in the abdomen a part of it too? It usually only happens when I eat a largish meal and always appears in the same spot. Interstingly, it is the same spot - or very near it - where I was stabbed all those years ago during my bashing incident. Could this be related or could the development of visceral fat in my abdomen be starting to push my internal organs around?
Is it normal for someone who is just 49 (for a few more months) to have joints that ache so badly that it inhibits his movement until he "gets going." Is this just old age?
I guess this is bothering me right now because these symptoms seem to be accelerating during the past few months - especially the lipo. I may have to let my hair grow out to try to hide the lumps.
SIGH,
Mark
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But is the pain in the abdomen a part of it too? It usually only happens when I eat a largish meal and always appears in the same spot. Interstingly, it is the same spot - or very near it - where I was stabbed all those years ago during my bashing incident. Could this be related or could the development of visceral fat in my abdomen be starting to push my internal organs around?
Hi Mark,
I'm wondering if you maybe have some internal scarring/adhesions from your stab wound that is only causing you trouble now because of the increasing visceral fat caused by the lipo?
As for the joint pain, I have an increasing amount of that, especially in my hip joints. My doc had a hip x-ray done yesterday, to be followed by a bone-density scan and/or an MRI. He's thinking it's hiv related because I'm 44. It's been going on for a while now, but we hoped it was because of first the hep C, then the adverse reaction I had to the hbv vaccine. Instead of getting better, it's getting worse, hence the hiv suspicion.
Ann
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When we are talking about HIV-related problems versus those associated with aging?
I know the lumps of fat that are making it tough to turn my head and now touch the back of my ears are part and parcel of lipohypertrophy. I know the belly I have grown also is a part of this.
But is the pain in the abdomen a part of it too? It usually only happens when I eat a largish meal and always appears in the same spot.
Is it normal for someone who is just 49 (for a few more months) to have joints that ache so badly that it inhibits his movement until he "gets going." Is this just old age?
I guess this is bothering me right now because these symptoms seem to begun accelerating during the past few months - especially the lipo. I may have to let my hair grow out to try to hide the lumps.
SIGH,
Mark
Hi Mark,
Well, I am 55. I will be 56 in December. I am carrying the gut... So I understand the gut issues. Also have the issue with that strand of ..whatever just above the penis. Feels like a bike inner tube. Everything I have tried has not settled that issue. I am not having to date any problem in the neck area.
But probably starting about a month and a half ago, I have been getting these slight aches or pains in the very lowest part of the gut. Right down in the lower groin are. Almost reminds me back in 2002, when I was having the problem with the hernia. I was explaining it that way to the doctor on my last visit.
And it almost always happens after I eat. May last an hour or two, and then just goes away.
So , once again, I have been trying to watch my diet, to see if that can produce any results.
I also seem to notice it more if I eat larger meals, so I am trying to cut down on the portion size,( I am a big eater) and just try eat more frequently, but smaller meals, during the day.
My next blood work, is The 19th of April, so I have to got to bring these issues, up with the doctor again, and see what he says. But the results of my last blood test on Jan 11th, showed everything was well within limits. so, go figure....
As far as the joints aching, for me it's mostly just the knees. It doesn't cause me that much problem, and it's nothing that I have to take any pain meds for. Then of course, I am also dealing with a little bit of arthritis in my hands. Just about on all the knuckles.
Wish I could tell you something...
Ray ( A sigh here too )
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As for the joint pain, I have an increasing amount of that, especially in my hip joints. My doc had a hip x-ray done yesterday, to be followed by a bone-density scan and/or an MRI. He's thinking it's hiv related because I'm 44. It's been going on for a while now, but we hoped it was because of first the hep C, then the adverse reaction I had to the hbv vaccine. Instead of getting better, it's getting worse, hence the hiv suspicion.
Hi,
I am 47, have always had some physical activity and am in good shape. I started meds over 2 1/2 half years ago. For the past year I've had a growing pain, first in both hips, that now has evolved to only my left one. I first attributed this to having taken up running again. So I stopped for a few months, time enough for a tendinitis to heal. To no avail.
Talked to my physiotherapist who also is my massage teacher and she said it could be the meds too; she's seen it happen in people with completely different pathologies who were taking meds over long periods of time. Secondly, as can happen with elbow tendinitis that are triggered by infections in the mouth, this could be triggered by hiv infection, despite there being no precise location for it.
I am undergoing treatment right now, in the form of deep tissue massage and they seem to partly alleviate the problem. I want to,as much as possible, avoid, or delay an injection of corticoïds as we know those are like an h-bomb to the immune system.
Hope this helps
Pat
edited because a frenchism escaped my radar
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Hey Ann,
I'm wondering if you maybe have some internal scarring/adhesions from your stab wound that is only causing you trouble now because of the increasing visceral fat caused by the lipo?
I was wondering whether the old wound might have something to do with it. I have an appointment with the doc May 2 and we are going to talk about it.
I tried to get in to see him earlier, but he's booked solid.
Also have the issue with that strand of ..whatever just above the penis. Feels like a bike inner tube. Everything I have tried has not settled that issue. I am not having to date any problem in the neck area.
Yep, Ray, I have that too. I wonder if its naturally occurring or something HIV related. I noticed the neck thing when I began to feel the lumps touch the back of my ears when I turned my head. It was rather unsettling.
Onward and upward, as the saying goes.
HUGS,
Mark
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Hey Pat,
I get the aches in the back, hips, knees and hands for the most part. I have a suspicion it is something arthritic-related because when I put my hands (or other body parts) in warm/hot water, the pain goes away almost instantly.
If I can find a practitioner, I would like to try the deep-tissue massage to see if it might help.
Keep me posted on how it goes.
HUGS,
Mark
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Hi Mark
I understand your concerns. We really are on 'uncharted territory' with HIV and aging, aren't we? I feel like many of my aches and pains (joints) are from being 50, and unrelated to HIV. The gut issues, a different story...I also experience a lot of gut pain, especially after eating. I think the belly fat has shoved my organs and intestines around or something. I am scheduled for a G.I. consult, but they can't see me until June! My new I.D. doctor has prescribed Pancrease MT 10 for me, and I have been taking it for a couple of weeks now; to be honest, I can't tell a whole lot of improvement with my G.I. issues (bloating, pain, discomfort, horrible gas, etc).
Hope you get some answers on your next doctor's visit.
Hugs,
Alan
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Mark and Ray,
Very familiar with lipo, gut pain, and joint pain. I used to have arthritic pain (age 36 through 41) in one hip and have seen it on an x-ray. When I moved to New Mexico, that pain left for good and I haven't had any arthritic pain since(dry climate). However, the meds have caused me a huge amount of joint pain from time to time, and the gut pain is almost excruciating at times.
Please remember guys that HIV is alive and well in our intestines and is eating away at the cells that keep our intestinal walls intact. I have absolutely no proof of my assumptions, but logic drives me to believe that most of us suffer from gut pain somewhere along the way with a long term profile. It just seems to me that there couldn't possibly be at least some permanent damage from this, and I wonder if maybe someone shouldn't start a study on these very ugly gut problems. I am just over it and it really is damaging my quality of life at this point. I hate making plans and then end up in the recliner just because I don't want to deal with being so much in pain and have to face people. I have also found that if I eat about 8 oz of yogurt daily without fail, the gut pain is somewhat reduced, and it certainly helps with digestion and diarreha.
I find a load of relief from the green smoke, and sometime hit that with my first cup of java in the morning, but never close to when I will be riding my bike. Need the balance to deal with feet that cannot feel the ground, or the footrests.
I also try to eat no less than four light meals a day and usually five, and I find that really helps with some of the pain. Other than that guys, it is true that your food intake will reduce with age and now I eat about half of what I did only five years ago.
Love,
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Mark,
for arthritic pains, try devil's claw, also know as Harpagophytum procumbens, an age old remedy. Additionally, joints could do with increased intake of silica which can be found in bamboo shoots and Urtica dioica.
That's for the phyto based stuff. Maybe worth a try.
About the massage, and if part of the problem is akin to chronic tendinitis, the reasoning is that massage will stimulate the manufacturing of collagen by the body and help circulation in the area (tendons are not that well irrigated), all processes that help heal the area.
You mentioned you have lipo and I was also told that with lipo we can be more prone to bursitis, inflammation of the bursa, little cushions that act as pulleys/gliding areas for our tendons. I resolved a massive one on my left elbow using a plant tincture. The first doc I went to see wanted to give me antibiotics (inflamed bursa can turn to infected bursa...).
Hope this helps,
Pat
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most of us suffer from gut pain somewhere along the way with a long term profile. It just seems to me that there couldn't possibly be at least some permanent damage from this, and I wonder if maybe someone shouldn't start a study on these very ugly gut problems. I am just over it and it really is damaging my quality of life at this point. I hate making plans and then end up in the recliner just because I don't want to deal with being so much in pain and have to face people.
Tim, I feel you on this one. It is really affecting my quality of life as well. I do not eat anything in the morning (not good, I know) but my stomach feels better with nothing in it. I normally eat lunch at noon, and am o.k. for awhile....then by 3 to 4 o'clock in the afternoon, the bloating and discomfort has begun. I basically feel like my intestines are just "worn out", you know? They hurt and they're sore. I have alternated between diarrhea and constipation for quite some time now, and probably use fleet enemas too often.
All my G.I. issues certainly affect my quality of life, and not in a good way. Sex life? When you are bloated and uncomfortable and gassy?
Not cute. I find myself spending more time in my recliner, and less time around people. The Pancrease has helped some, but I honestly can't see that much improvement. I wish there was an easy answer, but I'm afraid there isn't going to be. It is time for a colonoscopy, and I am going to request an endoscopy also.
Hugs,
Alan
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Alan,
Try yogurt and do it religiously. It can't hurt. The reason this works is that the drugs and the HIV seem to keep the bugs in our guts from doing a good job 'cause they kill them, and the yogurt replaces them and it is cheap. Trust me, it really helps with the pain and the gass and the shits.
Love,
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I'm 42, but I started falling apart at 35, so frankly I'm still just assuming 95% of everything is HIV related. It makes me feel better.
ps: Pancrecarb still works better, IMO, than anything else for the gas and bloating. Is it not on your ADAP formulary? It is here.
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I will be 55 next month and you can add me to the gut club. I have no excess fat anywhere else so I chalk it up to the meds. Bad knees hip and shoulder pain are on a daily to deal with basis. No insurance, so until I am 65 it is pretty much let nature take it's course. 50 was the start of me asking myself is this pain aids or age or both?
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Yes, I should have added I'm in the gut club and have been for a couple of years, at least where it has been much, much more apparent. It's seems to have gotten worse since I went on Truvada, but maybe that is my imagination.
Of course, that's another LTS problem. Is it med specific or just a layered cumulative effect. Anyway, if it's age let's rethink that because I'm too young to chalk it up to that, especially if it started in my late 30's. And of course, due to my chicken lipo legs and arms I look like a malnourished Darfur refugee, which of course greatly helps me in picking up men at the local bath house.
edit: actually it began before the Truvada, so I should look more to general PI's I think.
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I'm not sure one can really tell for sure what are side effects of aging versus what is from HIV versus what are side effects of the meds. Perhaps there is a mix of all three, in some cases.
I have had gut pain issues after eating as well. Always in the same spot, the upper right quadrant of the abdomen, just below the rib cage. It has gotten worse over the last year. However, it has been present to some extent since I turned 45 many years ago, and long before I became positive. The changes I have experienced with my poop are directly related to starting meds, but I can't say that the pain is.
As for achy joints, that started before my infection as well. It is a lot worse now that I have been on meds for a couple of years, but, then, I'm a couple of years older as well.
Oh, when I ask the doctor about these things, he says "who knows?" I suppose the answers still lie somewhere in the future.
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I have to eat. It just feels good. Without it the meds tear my stomach up. Yeah, the food leads to gas,bloating, and running to the toilet all day but I prefer that to the sensation that my insides are in a meat grinder.
Emtriva made me sicker and screwed up my stomach as much as any drug ever, rivaled liquid norvir and crix, and viread made me nauseated also, but truvada,which is a combo of both, doesnt seem to bother me as much. Very strange.
I constantly change my diet and the first few days things seem to get better but everything usually goes to shit(literally) after a week or so. I am always doing the low carb diet to fight the lipo fat but after a month or so I am so sick I have to go back eating carbs.
imodium and zantac all day everyday.
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Hi All, I’m only 9 years into my infection, and I’m not on HAART, but I also have IBS so I do take 6-7 pills daily for that. But what I really want to know is where is your abdominal pain? Whizzer says his is in the upper right quadrant. This is a big indicator of gall stones, especially if the onset is after eating. I work in medical records, so I see accounts of this on a daily basis; however I am not a clinical person, so this is just my observations. I did watch an ultrasound of a gall bladder in someone with such symptoms once, and when they had the patient roll on their side the stones seemed to roll off a little shelf like marbles.
I didn’t think I would post here, but I was compelled especially by the posts about pain after eating. Depending what I eat, I often have pain after as well, although mine’s way bloody South (for real.)
And I’m awed that so many participants in this forum are people that I have met in person. You are all AWESOME!
Love,
Creighton
P.S. Tim’s suggestion of yogurt in your diet is a Good Thing. Green is good, too.
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I think this forum is perfect for "us" I see that already there are many common symptoms...joint pain..gut issues..fat deposits..various types of pain after eating.....etc...I was probably infected in 1984....diagnosed officially and started meds in Jan 1994...so a LTS as are most of you..also probably older than most of you...68 in June... stuff that I find particularly annoying are the things that cause such significant pain/injury that used to not even be a noticeable event... I slipped one foot when climbing the stairs and "bent my toe" didn't break it but it took two weeks for the pain/swelling to go away...I don't know how many times over the years I have done that and never even felt it after the incident.The other common issue is that a simple bump or scratch turns into a scar/scab that takes weeks to clear up, this is mostly due to having no fat layer under the skin...
The Arthritis seems to be a common issue as well...My Dr says there is a significant genetic element to this as well as the effect of the meds....when I have any kind of scan/xray the joints all show up as glowing white spots...no real cure ..just keep moving as much as you can stand and take an Aleve when pain is too much...I will probably be participating more here and in the Lipo thread
Nick
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My problems with IBS or anything associated with the gut has been for years . . . ever since HAART has been the "standard" treatment. In addition to this, I suppose for me, my surgery I had to repair a hernia also complicates matters. I don't know whether the pain is the hernia repair giving me problems - like the scarring tissue - or whether it's associated with digestion. I've had my lower level examined and the hernia repair appears to be intact and just fine . . . however, the discomfort sometimes feels like I'm about to burst.....
My HIV doc suggests that it's primarily IBS and that he's given a list of things for me to 'try' including Psyllium. Sometimes it's like a lot of waste that accumulating in my stomach and hasn't quite made the right 'turn' yet to get eliminated. The meds have changed the way my body digests food, and therefore, even if I take Psyllium or a probiotic it doesn't guarantee anything . . . other than the fact that I've replaced some of my friendly bacteria.
As far as some of my pains . . . which are now in the shoulders - I guess I have to attribute some of it to my dog that insists on being a puller. But then again, it would be easy to just say I'm the old dog that's getting older rather than passing the blame onto my old friend HIV.
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Sometimes it's like a lot of waste that accumulating in my stomach and hasn't quite made the right 'turn' yet to get eliminated.
Hello David.
Welcome !! Thats kind of a good way of describing it !! I can go along with that.
Ray
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But then again, it would be easy to just say I'm the old dog that's getting older rather than passing the blame onto my old friend HIV.
Other than the issues with the gut, which are interminable, I agree with David.
Well, of course there is the PN thing. That makes getting up in the morning the hardest thing I do all day. I just can't walk. And then there is the depression associated with the drugs. That also makes getting up in the morning an even more strenuous chore.
And then there are the lapses in memory which have become quite acute just in the last few years. That's also a HIV thing, I suppose.
What does that leave to old age? Not much. I guess I can blame the arthritic thumb and the fact I take my glasses off now to do the puzzles on old age.
robert
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Marc ( and the others ) have you consider(ed) taking somethin like a
Glucosamina sulfate & Condroitin sulfate capsule mix. with add of a Collagen capsules on the top to ease your joint pains ?
http://66.249.91.104/translate_c?hl=en&sl=it&u=http://www.esitalia.com/html/indexita/nodol.htm&prev=/search%3Fq%3DNo%2BDol%26hl%3Den%26sa%3DG (http://66.249.91.104/translate_c?hl=en&sl=it&u=http://www.esitalia.com/html/indexita/nodol.htm&prev=/search%3Fq%3DNo%2BDol%26hl%3Den%26sa%3DG)
Al
P.S.: Not to mention old good Aspirin ,Bruphen or , Diclofenac-Duo (excellent , it does not burden your liver)
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Or maybe for some of you it could be a Reiter`s Syndrome
Google it
Al
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I have gut issues...many of them; gassy, pain, bloating, diarrhea. I started Pancrecarb about two weeks ago, and I think it is helping a little. Not as gassy, or bloated.
When I have to go somewhere, I take Imodium. It stops the diarrhea, but it feels like a plug in the dam. Everything just gets backed up and swollen, then of course, it all comes bursting out at a later point.
For the yogurt, probiotic users...have you ever tried Kefir? It has around 10-12 types of good bacteria, as opposed to yogurt which as 3-4 types. It tastes really good. Dairy is not my friend anymore, but some lactose intolerant people can tolerate yogurt or kefir, but I am not one of them. So, I take a pro-biotic supplement.
So far, no joint pain. I have been doing yoga for 10-11 years, and I think that has helped.
I have always felt that hiv ages the body faster than a non-hiv person. Along with the meds, it is so hard on the body.
Christine
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Try the dry birch bark. Soak it overnight and drink a TS before and after each meal.
The scientific name is " calami rhizoma"
"Application: Restorative and preventive means at functional frustration of a gastrointestinal tract. At gastritis, gastroduodenitis, enterokolitis, a pancreatitis - reduces inflammatory processes, promotes acceleration of wounds healing, at biliary dyskinesia - restores a muscular layer tone of a gallbladder and outflow of bile in bowels; at a cholecystitis - reduces inflammatory processes of a gallbladder, raises resistance of an organism to infectious and oncological diseases.
It is all natural, tastes bitter, but has helped a lot of people.
Also used in oncology.
YT
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Slet, the dry birch bark powder comes from a tree(Birch , or betula alba) and the calami rhizoma (Acorus calamus) is an aquatic herbaceus plant . Both plants have medecinal properties but they are not the same.
After googling here in there, I finally found a health preparation used for gastrointestinal disorders using these two plants.That could be the product you described.
http://www.birchworld.org/products/cid/4/id/15/ (http://www.birchworld.org/products/cid/4/id/15/)
regards,
Jacques
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Just make sure you do your research regarding herbal remedies and run it by your doctor. I know of several herbs I can't use with my meds...better safe than sorry.
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Auntie Doxie is correct!
Many herbal remedies can inhibit uptake of PIs and also other meds, so all of you, please be very careful, as the herbs can bring on resistance and make your virus stronger.
Love,
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frenchpat... I grow stinging nettle (urtica diocia) in my childrens garden... lol my nephew will never pull on my herbs again... its great for anemia... I make a wonderful herb tea with it... also clalendula tea is great for the flu and or colds... no problems with my meds... certain herbs I do not use because of possible reactions... yerba mate, geen tea is a favorite beverage I keep in my fridge... but, sometimes my bones just ache so bad I'd pay someone to steam roll over me... lol I just get up a move... I asked my grandmother who lived to be 107... what she did to live so long... she said move even when you do not feel like it... just keep moving... tough woman she was...
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Wow, I did not know that hiv really does a number on the tummy...Thanks for that tidbit of info Moffie...I am like Alan can't eat til late in the day. The only time I eat a great deal is when I have munchies otherwise I only eat once a day. And I know this is bad considering I am diabetic and should eat more. I get stomach pains as well but only when using the bathroom. pain comes from the bottom of my stomach. I don't want to be too detailed or there is times when just out the blue, I am pissing out of my ass, it is shear liquid.
I still haven't started meds yet but I have a gut. I think mine came from having 3 C-sections. I have even noticed joint pain in my right leg but usually when it is rainy. I also have been getting numbness in my feet and hands. I mentioned this to my ID doc. He said if it was persistent that it would be hiv related and considered mine to be more related to my diabetes.
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Hey Akasha,
Yep, I know the feeling regarding the liquid hersheys. Before I discovered I was a celiac I really understood it.
Regarding the numbness in your hands and feet, that sounds a lot like neuropathy. It is also quite common among diabetics as well as hi-fvers.
Be careful with it. I know diabetics can have difficulties with their extremities and the numbness could allow you to injure yourself and not realize it.
HUGS,
Mark
Edited for typo
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Wow, I did not know that hiv really does a number on the tummy...Thanks for that tidbit of info Moffie...I am like Alan can't eat til late in the day. The only time I eat a great deal is when I have munchies otherwise I only eat once a day. And I know this is bad considering I am diabetic and should eat more. I get stomach pains as well but only when using the bathroom. pain comes from the bottom of my stomach. I don't want to be too detailed or there is times when just out the blue, I am pissing out of my ass, it is shear liquid.
I still haven't started meds yet but I have a gut. I think mine came from having 3 C-sections. I have even noticed joint pain in my right leg but usually when it is rainy. I also have been getting numbness in my feet and hands. I mentioned this to my ID doc. He said if it was persistent that it would be hiv related and considered mine to be more related to my diabetes.
Queen, I'm curious...what does your Dr say about all of this?
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yeah in my last 2 years Iv'e noticed a real shift in solid or liquid waste. I don't have stomach pains and feel normal other wise. but some days without warning the bathroom has to be close by.
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in regard to joint pains, if due to PI's you have now had to go on cholestrol statins, be aware that in some folks a side effect is bone and joint pains. there is a chemical blood test your dr can do to determine if that is what is causing your problem.
kellyspoppi
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for those of you needing a probiotic supplement I take one called Probiotic Advantage from a Dr David Williams that has concentrated L acidophilus and B longum it's in a little bead capsule and designed to get it past your stomach
website is drdavidwilliams.com or call 1 800 888-1415
my dad gets his nutrition newsletter, hope this helps with some of your gut problems
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Hey Kellyspoppi,
Yep, I ran into that with Vytorin. It was pretty nasty. Actually, I have been feeling a lot like that lately, so I may have the doc check the CPKs again just to be safe. I am now taking Pravachol, which isn't supposed to interact with my Crixivan, but, knowing me, it probably is.
Thanks for the reminder.
HUGS,
Mark
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glad to help mark.
funny thing is, after trying all the others, i'm back to double the amount of lipitor as that is the only one that seems to be working not that i tested negative.
i'll keep you informed.
kellyspoppi
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correction.
that's "now" that i tested negative for the chemical that causes the pain in joints.
sorry for the misprint.
kellyspoppi
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Anne - A few years ago I experienced terrible pain in my hips. I went through nine orthopedists and neurologists before one of them ordered a bone density scan and diagnosed the problem as osteopenia/osteoporosis and put me on bisphosphonates (Fosamax, etc) and calcium supplements. After a few months the pain went away completely.
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Mark
I believe that this is a question ( How Can You tell if its HIV or Ageing) when family history has to be brought into the picture.
My partner had his first knee operation at the tender age of 16. Long before he became HIV positive. In fact he and his brothers all have joint and knee problems....including pain of course. So how DO you separate the two....?
I dont think you can. HIV simply becomes another part of your total body makeup. I am not going to discuss meds because I am not qualified. We all know that meds have side effects and that HIV positive people have more problems with neuropathy and bone density. But would my partner be getting injections of artificial lubricant and would he be looking at knee replacement at the age of 50 if not for HIV? I dont think so.
What do you think?
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My consultant tells me that whatever you were genetically destined to have, HIV may make it earlier onset or more severe. Personally I've got horrific arthritis, ...possibly ten or twenty years before I would have done before immuno collapse. Its VERY hard to tell what is virus related or just what would have happened...your ID doc should be made aware of any family health issue so he/she can deal with things as they/if they occur and advise you. I really do understand, and empathise, its so hard to seperate '''normal''' stuff from the effects of the virus
Hope this helps..and there are organisations in UK dealing with these bone problems, sure they can supply links to US if you need them...PM me if you need addresses, arthrocare.org a good resource
xx