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Author Topic: Late-stage HIV symptoms  (Read 14494 times)

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Offline zander

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  • Posts: 3
Late-stage HIV symptoms
« on: October 23, 2009, 09:53:09 AM »
Hey guys and girls! I've got some questions for you. I'm hoping that I can benefit from your combined experience. This is my first post here, although I've been reading the forums and using the website for many years.
I've been HIV positive for 17 years, and was relatively asymptomatic for the first 12 years or so. About five years ago I began having mild symptoms like fatigue, shortness of breath, diarrhea, unexplained fevers, and frequent bouts of illness. Over the five years, my symptoms increased in severity, frequency, and duration, then became so painful and disruptive suddenly that I became unable to work at my job. Consequently, I've been on STD through my employer's plan for the last six months.
I cannot make any correlation between the dramatic increase in my symptoms with any particular event. I began HAART in August 2008, about eight months before the symptoms got so bad, so there is no connection there. Besides, many of my symptoms began, as I said, five years ago, before I started meds. I have severe, constant fatigue, nausea, diarrhea, headaches, unexplained fevers, night sweats, dizziness, mild neuropathy, constant malaise, weight loss, and other symptoms that are not as severe.
My doctor has been checking for possible OIs, and has changed my meds a few times, but nothing has changed. My CD4 (400-500) and viral load (0-75 copies) look pretty good, no worries there.
My question is: can these symptoms be caused by HIV itself or, more specifically, by the damage HIV has caused to my immune system over the previous 17 years? My own research indicates that these problems can be attributed to long-term, advanced HIV progression, but I'd like to confirm that by actually connecting and hearing from others who have long-term, symptomatic HIV disease. Yet, my doctor shrugs off and immediately dismisses this possibility. What can you tell me about symptoms of HIV disease in long-term survivors on HAART, and with no identifiable OIs? I'd like to hear from as many people as possible, especially those on HAART, with good labs, and no current OIs. In other words, with a similar background as my own.
Thank you in advance for the benefit of your expertise.
"How far that little candle throws his beams! So shines a good deed in a naughty world." - William Shakespeare

Offline Miss Philicia

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Re: Late-stage HIV symptoms
« Reply #1 on: October 23, 2009, 10:48:52 AM »
Can you be more specific as to what you did and didn't do in terms of medical care before you went on antiviral medications in 2008?  How did your disease progress in terms of lab numbers for those 16 years?  How low did your cd4 and cd4% go, how high did your viral load go all in the absence of HIV meds?  How often did you see your doctor all those years?
"Iíve slept with enough men to know that Iím not gay"

Offline zander

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Re: Late-stage HIV symptoms
« Reply #2 on: October 23, 2009, 11:08:06 AM »
Sure, Miss Philicia.
I regularly saw my doctors throughout the years between diagnosis and starting HAART. I did not take any meds at all until HAART in 2008, except for one year of d4T back in the 90s. Back then, the thinking in the medical community was not to begin medication unless CD4/viral load counts reached a certain level. Mine never did back then. My average absolute CD4 over the years before meds was around 450, and my average viral load was about 30,000. My lowest CD4 on the labs that I do have was 330 in 2006, and the highest viral load was 94400 in 2007. Both sets of lab results were rather all over the place during the years before medication.
"How far that little candle throws his beams! So shines a good deed in a naughty world." - William Shakespeare

Offline Miss Philicia

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Re: Late-stage HIV symptoms
« Reply #3 on: October 23, 2009, 11:48:22 AM »
OK, I was just curious how damaged your immune system was when you began meds.  While you weren't ever in AIDS-y Land from a numerical perspective, obviously hovering around the CDC HAART commencement recommendations of 350 cd4 for 16 years still caused your immune system to be damaged, so I'd still chalk your slow progression to that, and then finally the last five years previous to starting treatment your body was giving you signals.  It was your decision not to go on treatment before you did, so I guess you're just going to have to wait for your body to get your numbers up more.

While I have been on treatment for 17 years, it took me 14 years to get my viral load suppressed so I experienced some of what you have described myself.  For example, a sustained high viral load even at 30,000 - 90,000 (mine was generally around 40,000) can reek havoc on your digestive tract and cause perpetual diarrhea issues (which in turn can cause malabsorption and weight loss), as well as fatigue and night sweats.

As far as your doctor shrugging things off, I'd assume it's his thinking that you need a few years on treatment for these things to slowly go away.  Personally though, at least as far as the diarrhea goes, there are things available he could be giving you to address this and make your life a big easier.
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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  • 32 years positive, 60 years a pain in the butt
Re: Late-stage HIV symptoms
« Reply #4 on: October 24, 2009, 11:41:39 AM »
Hey Zander,

First, welcome. Glad you're here.

You and I have frighteningly similar histories. I tested positive in 1985, didn't go on med till 96. I've been on several regimens, including nasty dance with Sustiva, which I won't go into right now. I've never had an OI and my CD4s have never dropped below 400.

First, the fatigue and malaise you discuss are pretty common among us long-termers, even those of us who have never had an OI.

My doctor and I have discussed it, and he described it as perpetually recovering from the flu. You know, the stage where the bad aches, fever, etc., are over, and you just feel drained?

We are constantly battling the virus, even those of us who are undetectable via our meds. My doctor said he didn't have any proof and couldn't cite any particular studies, but that it just seemed logical for people constantly battling a disease to feel fatigue, etc.

It made sense to me. I have no other explanation for it. But I know that most if not all the long-termers I know complain they have it.

As for the fever, night sweats, etc. I haven't really experienced that.

The diarrhea though, that I'm very familiar with.

Turned out in my case, it had nothing to do with HIV at all. I was found to be gluten intolerant. Once I cut the gluten out of my diet, my diarrhea disappeared and I felt much better.

I should add that I am now less fatigued than I used to be, which my doctor attributed to my cutting out the gluten, allowing my intestines to heal and now being able to properly absorb nutrients.

One thing I would recommend is to check things "outside the box," so to speak. That is how we found the gluten intolerance.

Remember not everything that goes wrong is HIV-related. I don't know how old you are, but after I turned 50, some of the "old age" stuff started to kick in.

So, that is another avenue you may need to explore.

Anyway, I've bored you enough for now. I hope some of this was helpful.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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Re: Late-stage HIV symptoms
« Reply #5 on: October 24, 2009, 01:36:13 PM »
Hey Zander,

Turned out in my case, it had nothing to do with HIV at all. I was found to be gluten intolerant. Once I cut the gluten out of my diet, my diarrhea disappeared and I felt much better.

Mark ,how did you find out you were gluten intolerant , is there a test for this? I'd sure like to know?  my diarrhea has never disappeared even with Imodium twice a day, and even after being on HIV+ MEDS for the last 19 yrs. I still have the fatigue and malaise , but, to me I just think all of this is part of my disability for the last 12 years, so, I kinda have learned to live with this.......I'm wondering, if after all these yrs. me and my ID doctors are missing something here, I did find out that I was lactose intolerant  over 5 yrs ago, and I stopped all dairy products, but, this didn't help my diarrhea fatigue and malaise  ???

« Last Edit: October 24, 2009, 01:44:43 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline zander

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  • Posts: 3
Re: Late-stage HIV symptoms
« Reply #6 on: October 28, 2009, 07:39:45 AM »

I'd like to thank everyone who responded. I was hoping to get more feedback and shared experiences from people on HAART, with acceptable CD4/viral load count, who have been experiencing severe and varied symptoms such as my own, but every little bit of information helps so much. At least I feel a little less isolated in my condition.

I especially appreciated Mark's response, and his suggestion to look for other culprits (i.e. gluten intolerance, etc) that may be causing some of my symptoms. I'm going to make appointments with other types of specialists to look into that with me. In the meantime, I'm looking for a new infectious disease physician, one who won't dismiss my suffering so quickly (or ignore symptoms altogether), will look me in the eye when he speaks with me, and shows a sincere interest by asking me detailed questions. If anyone has any recommendations for such a compassionate and knowledgeable HIV specialist in the Orlando, Florida area (and who has no qualms about helping with disability paperwork), please let me know.

Thanks, all!
"How far that little candle throws his beams! So shines a good deed in a naughty world." - William Shakespeare

Offline lforsyth

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Re: Late-stage HIV symptoms
« Reply #7 on: November 02, 2009, 09:41:22 AM »
Just thought I'd share as a LTS on this subject.  Anonymous testing wasn't available in my area (then Long Beach) until 1986 after the Surgeon General's report was released. My friends and I all tested positive.  A couple of guys I knew and had had relationships with tested positive in 1985 earlier.  My Doctor in West Hollywood (Harry David) had lost his partner and was selling his practice when I moved to Arizona with my company that relocated here.

My previous Doctor had me tested for CD4 count every three months.  In the 1990's I started having night sweats and some of the affects that zander mentioned.  By this time my friends in L.A. were all gone and the friends I met here in AZ were also. I was starting to get worried about not being put on meds because my CD4 count was still above 300. The viral load test was available in 1997 and that's when I was finally put on meds: Viracept, Epivir and Zerit. The side affects seemed to be as bad as I felt before treatment (be careful what you wish for) but I've stuck with it and have CD4 at 850 with Viral load undetectable most of the time.  It usually takes about 4 hours to get past the side affects each day and I can't take meds if I'm going to be driving. Epivir and my Blood Pressure pills cause dizzyness and I would want to get a DUI here in AZ.

My Doctor and I recently decided to change Viracept for Prezista with Norvir.  Norvir causes the same side affects and I have to drink lots of water to get my system back to normal.  We tried replacing Epivir and Zerit with Epsicom. This was before thay had a reliable allergy test and people at work worried about how I reacted to it so I had to go back to Epivir and Zerit. Having HBV also I'll be on some form of Epivir the rest of my life. With Viracept I would have episodes of fatigue and could barely walk for a couple of hours but that has improved with the change to Prezista, still it's taken a couple of weeks to get used to the affects of the new combo. Every Day is an adventure but at least I seem to be doing well.

So I guess that I also think that there are long term affects having HIV.  I recently read that there was a study that HIV also affects loss of bone mass and that the meds seem to accelerat the problem.  My doctor is going to arrange for me to have bone density xray done.

Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline pozatude

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  • Posts: 4
Re: Late-stage HIV symptoms
« Reply #8 on: November 04, 2009, 02:27:54 PM »
Hello Zander . . . I'm a survivor of 23 years, so far, and I've been having similar symptoms as you, except no night sweats.  I'm 6'2 and weigh 140 pounds, fatigue is such an issue that I have a rough time making it through a 4 hour shift at my part time job.  I sleep 10-12 hours a day and I have unexplained low grade fevers.  There are times when I go through a 2 or 3 day 'bout of diarrhea and nausea followed by a few days when I feel great.  This has been going on now since the Labor day weekend.  I'm currently on Sustiva, Ziagen and Videx EC and I did not start HAART until 1996 when my T-cells were at 90 and I had ITP (Immune thrombocytopenia).  I have been through a very thorough exam by 2 Doctors and neither one can find anything abnormal.  My T-cells now are in the 500-600 range with an undetectable VL.  I'm beginning to believe that these problems are caused by my meds, and one of my doctors wants to change them to newer treatments, but I'm apprehensive only because my lab work looks so good on this cocktail.  Both Dr's came to the conclusion that my problem is depression and sent me for a psych consult.  Of course I'm depressed, and feel I have reason to be, so I'm not amused by the psych consult, but went through it anyway just to prove to my Dr's that my depression is nothing out of the ordinary for a person in my situation.  So anyway, I'll be watching to see if anyone posts anything that could give us any clues as to what might be going on.  In the meantime, keep on fighting and demand that your symptoms be taken seriously and thoroughly explored.
"Live, Laugh, Love"

Offline jm1953

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  • Posts: 295
Re: Late-stage HIV symptoms
« Reply #9 on: November 25, 2009, 10:50:45 PM »
Welcome to the forum.

I'm 22 years positive.  Like other members have posted, it is hard to determine if it is the meds or the virus that is causing these problems.  I suspect both for us long termers.

My major problems really began this year.  It began with a terrible rash leading to a positive diagnosis for lupus.  This was proven a false negative by tests run by my rheumy but I don't buy it.  I still feel I have symptoms.  From there it was suspected I had thyroid cancer.  Fortunately that turned out negative, but being monitored.  Then found out I'm in Stage three chronic kidney disease, where my kidneys are moderately functioning.  Thankfully stable at this time.

Mostly skin problems have been the on going problem despite these horrific diagnosis'.  After seeing my dermatologist countless times, trying topical, orals, you name it, like one of the other members, I had a food chemical sensitivity performed and found out I was allergic to many things.  After I changed my diet around, and stopped using medicines and products with the ingredient I'm allergic too, things began to turn around for the better.

As everyone knows, this virus is different in every individual.  I think the best thing is to really take care of yourself, eat well, sleep well, and listen to your body.  And of course adhere to your medication schedule.

I wish you the best,

Positive 29 years. Diagnosed 10/1987.  Current CD 4: 720: Viral load: almost 100.  Current drug regimen, Tivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Uloric, Losartan Potassium,Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.


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