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Author Topic: Freaking out - please help - new Atripla / Facial Wasting?  (Read 3497 times)

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Offline SteveS

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Freaking out - please help - new Atripla / Facial Wasting?
« on: June 12, 2013, 11:26:16 AM »
Thanks so much for your support.

I am brand new poz, on Atripla for only 3 weeks, with what the Doc called "excellent" numbers - brand new infection (less than 6 months for sure) and VL of less than 400 and good cells at around 1000....Those were my numbers BEFORE any Atripla...

It really, really seems to me that my cheeks are starting to look sunken. Is this possible, this fast? I have lost 10 pounds because I have started exercising and becoming much more diligent in my diet - but it seems much different than that. They literally look like they are becoming hollow in the center of my cheeks. Is this even possible so quick?

I realize it can be paranoia with the new reality that is setting in, etc, and of course I will ask my Doc to track it, etc. - but any anecdotal assistance you can give in this would be so helpful. I am Caucasian mid 40s.

Offline Jeff G

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #1 on: June 12, 2013, 11:30:23 AM »
You absolutely can not get facial wasting in three weeks , no way .

I would think at 40 and losing weight you are going to start to see changes in your face , but its definitely not wasting . 

Offline Ann

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #2 on: June 12, 2013, 11:51:50 AM »
You don't get hiv-related facial wasting so soon following a "brand new infection" either. Hiv-related wasting of any sort only happens after years of having an untreated infection.

It's the exercise and dieting with perhaps a dash of ageing, not hiv or hiv meds.
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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline darryaz

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #3 on: June 12, 2013, 12:12:20 PM »
It's the exercise and dieting with perhaps a dash of ageing, not hiv or hiv meds.

Absolutely.  I started working out and lost about 20 lbs. after I turned 40.  I loved the way my body looked but it made my face look 20 years older.

Also, my doctor has indicated (and I've seen it confirmed in other places) that Atripla is not known to cause facial wasting.
« Last Edit: June 12, 2013, 12:15:34 PM by darryaz »

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #4 on: June 12, 2013, 12:22:54 PM »
Jeff 

I appreciate your reply.

Please, please do not take this the wrong way - but can I ask what level of experience / authority you know this from? I realize you are a moderator....and I really appreciate the strength of your response...but can you let me know a little bit of WHY you feel so confident in your response.

I am only into this journey 3 weeks and it is VERY BIZARRE that on one hand it is like "This is not a huge deal - take one pill a day and you are going to be fine" VS. "Oh my God - this is going to destroy my life.".....I am having a hard time figuring out which is real....

Anyway - any answer you can give is so helpful.....

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #5 on: June 12, 2013, 12:26:03 PM »
Just now saw these other replies also -

Can you help me understand the balance of all of this?

On one hand - my numbers, according to the Doc, were "extraordinary" - extremely good and strong - and I am doing fine on the Atripla with very little side effects - so part of me feels like - "hey - this is just another vitamin I am going to take and I don't get to eat sushi any more, but the rest of life will be basically normal...." but then you get on these sites and everything is "Hiv poz people are 20 times more likely to contract this and 30 times more likely to die of that" etc - and it is just a MIND F$#$!

I cannot tell how much of what I am going through is mental and how much of it is really that I have a very serious condition - or anything -

Every little bit of communication from you all is like a drink of water because I am not able to disclose to anyone. This is the only way I can talk about this.

THANK YOU.




Offline wolfter

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #6 on: June 12, 2013, 12:32:58 PM »


Please, please do not take this the wrong way - but can I ask what level of experience / authority you know this from? I realize you are a moderator....

I hope Jeff doesn't mind me chirping in, but some of us bring years of experience here and if you're looking for a definitive answer, then seek out someone with medical expertise. 

Many of us suffered true wasting in the early years and it definitely didn't happen within a mere few weeks or months.  It's a result of a long term, untreated virus and not a side affect of your current treatment.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #7 on: June 12, 2013, 12:33:36 PM »
Jeff 

I appreciate your reply.

Please, please do not take this the wrong way - but can I ask what level of experience / authority you know this from? I realize you are a moderator....and I really appreciate the strength of your response...but can you let me know a little bit of WHY you feel so confident in your response.

I am only into this journey 3 weeks and it is VERY BIZARRE that on one hand it is like "This is not a huge deal - take one pill a day and you are going to be fine" VS. "Oh my God - this is going to destroy my life.".....I am having a hard time figuring out which is real....

Anyway - any answer you can give is so helpful.....

My experience is living with HIV for 30 years . I also know from experience that facial wasting doesn't happen for many years after testing poz , if at all . Then there is the fact that Atripla isn't known to cause wasting . I don't think you are going to be the first person in the history of HIV to get on the fast track to facial wasting , and that's a good thing isn't it ? .

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #8 on: June 12, 2013, 12:51:47 PM »
All -

Thanks so much - especially Jeff - for your patience and input. I am not looking for the definitive / medical answer, but more the "real life" ones which I am getting here, and am very appreciative.

Does anyone have any input regarding my confusion as to the balance of this? Is this really just a "once a day pill" thing and take care of yourself and all is fine, or is it far more consuming / serious? I just saw on the "BODY" site that one of their Doctors, who was very up beat about the whole thing, and was HIV poz, basically dropped dead of bacterial sepsis....Like what is THAT all about? And all the things on the web about propensity towards anal cancer (I have had HPV anal warts) etc....

I am just trying to "land" somewhere emotionally with this - I do have tendencies towards obsessiveness, but also, in the past, have been extremely strong physically, never sick, etc.

It just helps to type this. Thanks for listening and even more for those who have replied.

Offline darryaz

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #9 on: June 12, 2013, 12:52:10 PM »
With a CD-4 of 1,000 if you feel so inclined to eat sushi (I personally am not a fan) then you should go for it.

Offline Miss Philicia

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #10 on: June 12, 2013, 01:27:13 PM »
There's a clinical difference between wasting that can appear in one's face and lipoatrophy caused by HIV medications. They can appear similar but don't work the same way. One you can gain back as long as you don't die, the other causes a mitochondrial dysfunction on a cellular level and you don't gain it back except perhaps minimally -- or of course by using facial fillers.

Sorry to get all semantic-ish but it's a pet peeve with this issue. Otherwise I agree with our other respondents that you have neither HIV-related wasting or lipoatrophy. If one loses 10 lbs from working out while simultaneously changing their diet (i.e. amount of fat in your food) your body will respond in kind. Look at any bodybuilder when they diet before a competition and you'll see what I mean. You're only sensitive to this issue because you have HIV and are paranoid, in my opinion, of things you read about HIV medication or the disease itself that are by today's standards horribly outdated.
"Iíve slept with enough men to know that Iím not gay"

Offline buginme2

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #11 on: June 12, 2013, 02:02:57 PM »
- "hey - this is just another vitamin I am going to take and I don't get to eat sushi any more, but the rest of life will be basically normal...."

I hate to change the subject, but who told you that you can't eat sushi anymore?  Of course you can.

You have a lot of posts on here in the short amount of time since you've tested positive.  Each one of them has its own version of a "freak out."  Stop for a moment.  Relax.  It's going to take some time before you get used to being positive.  It will happen but it takes awhile.

In the meantime, are you in therapy?  I think therapy is necessary when you've recently been diagnosed with any illness much less hiv.  There is a ton of information being thrown at you, it's hard to differentiate what is good info and what is crap, and on top of it you have all the emotional baggage life brings with being HIV positive.  Speaking from personal experience, therapy helps after being diagnosed.  Even if you think you have it all together, just my opinion.


Ps. You don't have facial wasting :-)

Offline mecch

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #12 on: June 12, 2013, 02:40:45 PM »
Steve you are dumping way to many issues into the pot. 

Your questions about living well with HIV, longevity, belong in a separate conversation to your unfounded fear, and present panic, about facial wasting.  But, this genalized anxiety about your diagnosis and your life going forward, is probably why you are having this facial wasting fear.  It's displaced.

Also, sounds like you went on a radical "turn my body around" regime. Diet, exercise, weight loss.

First of all, none of that "radical lifestyle" change is obligatory in many cases of living well with HIV.  I mean we have to watch what we eat and exercise, stay a reasonable size, or lose weight if we are not - JUST LIKE ALL AGING HUMANS.

If you are 40 (?) and are just starting your "radical body" makeover, its very possible you'll lose it in the face first, my dear.   You might end up liking that look.  (Its not wasting.... )  The world is filled with tight muscled mature men, with "hot" bodies, very low body fat, and very striking faces.  (Daniel Craig and Hugh Jackman come to mind.)

Catherine Deneuve has long said, that an aging beauty can keep her face or her body (ass, actually)...  Meaning, she needed to let herself have the voluptuous curves and frankly big ass of a mature woman, to keep her soft beautiful face. 

(yeah that, and plastic surgery)

Its all about choices....
« Last Edit: June 12, 2013, 02:44:10 PM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #13 on: June 12, 2013, 03:25:46 PM »
Thanks for your replies....

The intake specialist HIV nurse told me not to eat sushi anymore. She has been an HIV nurse specialist for 24 years.

Yes, I am paranoid and obsessive. I mentally understand that which is why I am asking for help. It is hard to differentiate fact from fiction three weeks in.

The only therapy I am in / can afford right now is forums like these. I am not trying to be overly difficult with my posts, etc, and am sorry if I am somehow seeming difficult. Respectfully, most of you it seems have been dealing with this for 20-30 years, and I sincerely salute you, and am genuinely appreciative that you are even taking the time to reply and dont' want to lose that benefit. But, in my situation, I engaged in VERY low risk behavior (the Dr tested me three times because he cannot believe I got infected from what I did -but it is the truth and the only possibility) - and then I had these weird numbers (Extremely good, but weird) and just not knowing what to do.

One example - I had someone on another post REALLY criticize the dr. for starting me on meds when my numbers were so good, and that maybe I was a non-progressor, but now "we will never know" -- but then had others say it was the  right move because early treatment is now almost always best....

The other example is the sushi. This HIV nurse actually won a major regional HIV treatment award, but you are all saying sushi is fine.

I freely admit I am paranoid right now, and apologize for it, and welcome factual assistance with it. I simply ask for patience - I am not even 30 days into this and I am trying to getmy  bearings. THANK YOU!

Offline buginme2

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #14 on: June 12, 2013, 03:58:49 PM »
I get it.

I haven't been positive that long, a few years or so, but since I was diagnosed a lot of info about HIV and its treatment has changed or evolved.  There is a lot of different information out there floating around.  It takes time to get a handled on whats relevant and important to you.  Thirty days in it can seem overwhelming.  I do recommend the therapy thing though.  Your in the US right?  If you can't afford private therapy do you have insurance?  You can also see if there is an ASO that offered therapy for the newly diagnosed.

We have all been there.  HIV is a bit of a mind fuck.  There is a ton of info pushed at you how you can live a normal healthy happy life and then the next day some HIV nurse tells you you can't ever eat sushi again. 

The truth lies somewhere in between. 





Offline Miss Philicia

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #15 on: June 12, 2013, 04:11:29 PM »
Steve, as far as sushi and what your nurse told you -- it's more nuanced than she is saying. If you have <200 (conservatively) actual cd4 count then yes, it's not the best idea to eat raw fish products. Did she tell you not to eat steak tartare as well? How about oysters? Did she bother to explain why if you cd4 count is (just an example) 1500 and the nurse's is only 700 why it's safe to eat sushi for her but not for you? There's nothing in an HIV virus that activates on it's own with raw O-toro tuna. Frankly the fact that she didn't go into detail about this issue better only tells me her "award" is better befitting someone that just learned how to do manicures.

If you like sushi, and have a respectable cd4 count (I don't know what yours is and am not bored enough to go read your old posts) then you are no more likely to get food poisoning than someone without HIV. Now, personally what I am careful about with such products is not buying them from some dicey place because the price is cheaper. When I eat such food I make sure it's a very reputable place. Just a week ago I ate one of those lovely raw/iced top-notch tiered seafood thingies (aka plateau de fruits de mer for Guilhermina) and I've managed to still be alive.

Now, since you're paranoid/obsessive (which is normal at this stage) and if you really want sushi please have a proper discussion with your infectious disease doctor, not a nurse (no offense to nursing, but it's not a full medical degree).

Also, do you live in a metropolitan area or a rural one, because if it's the former you may benefit from a real life support group since you stated you can't afford a mental health therapist. Also, you'd be surprised that if your income is low a case manager will hook you up with a therapist at little to no cost. Just saying if you've not really looked into the matter.
« Last Edit: June 12, 2013, 04:16:17 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #16 on: June 12, 2013, 04:17:47 PM »
All -

Well - you have made me laugh - THANKS! I honestly am not crazy about sushi and rarely eat it anyway - lol - I was only using it as an example of my "bombardament" of seemingly different perspectives....But now I know more about sushi and HIV than I ever thought I would....

Again - many thanks to all - I realize this is just a day at a time - Thanks for your comments and support!

Offline Ann

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #17 on: June 12, 2013, 04:25:09 PM »

The intake specialist HIV nurse told me not to eat sushi anymore. She has been an HIV nurse specialist for 24 years.


Steve, you said it was the "intake" nurse who banished sushi from your diet - but was this at an initial intake appointment before your numbers were available? Is it possible that this was said to you very early on in the process (just in case) and it stuck with you?

It's true that a poz person with very low CD4s probably shouldn't indulge in sushi. A random hook-up with a bad fish can lay anyone low, and someone already struggling, it's a no-brainer.

But someone with your CD4 count? As long as you're going to reputable places, it shouldn't any more a potential problem than before you were poz.

I'm moving this thread from Treatments to Just Tested - because this thread deals more with navigating a new diagnosis than it does with specifically with treatment.

Hang in there Steve, you really are going to be ok.

Calm Down and Take Your Meds

;D sorry, couldn't resist. ;)



I got distracted in the middle of writing this - and Steve posted again in the meantime. Posting anyway. ~shrug~   (we need a shrugoticon)
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mecch

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #18 on: June 12, 2013, 04:40:19 PM »
IMO you are not being "difficult" in the least.  Diagnosis + treatment is a truckload to deal with, as others said.
I guess maybe (?) one of the dichotomies you are dealing with is - is living with HIV a huge battle filled with endless complications and expertise knowledge, or is it "1 pill a day" and smooth sailing, business as usual.
Any individual experience can fall anywhere on the continuum.  I would guess you're going to have pretty much smooth sailing so maybe it would be good to keep that in mind these next few months as you get back into your groove.  You got the "bug" but you also got a great response to it.  Its not easy to try to "chill" if you are naturally a bit obsessive but that's probably the best thing to do...  Keep up business as usual and let all the details and knowledge filter in at a manageable rate.  No sense worrying about a bunch of possible downsides if you yourself are never going to experience them....
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline darryaz

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #19 on: June 12, 2013, 04:56:35 PM »
"bombardament" of seemingly different perspectives

I know exactly what you mean.  That brings to mind something that happened to me shortly after I was diagnosed:

My brother (trained as a nurse but not currently working as one) was visiting and while he was in my house I walked to the kitchen sink, filled a glass with water and started to drink it.  My brother went ballistic because I was drinking tap water.

He had apparently heard on the local news where he lived (600 miles from my home) that people with compromised immune systems were advised not to drink tap water for a specified period of time

He somehow translated this to mean that NOBODY with HIV should EVER drink tap water ANYWHERE.  This was in 2007 and I've continued drinking tap water ever since, with no ill effects.

I think most folks on here will agree that healthcare providers tend to be extremely conservative because they are afraid of being sued.

Offline Miss Philicia

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #20 on: June 12, 2013, 05:04:31 PM »
Nurses are great for nurse-y things, not for medical advice specific to a disease. I just smile and nod and then ask the doctor my questions. The only other people I pay attention to is if the doctor has people in their office doing their residencies, which you mostly will find at a specialist. Even so, I'll still run anything they say by the head doctor. It's all just part of being a good patient.
"Iíve slept with enough men to know that Iím not gay"

Offline oksikoko

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #21 on: June 12, 2013, 05:07:08 PM »
I ate one of those lovely raw/iced top-notch tiered seafood thingies (aka plateau de fruits de mer for Guilhermina) and I've managed to still be alive.

I was going to say "We're still waiting for proof that blood runs in those veins," but then I thought that might be rude, so I won't say it.

As for therapy being expensive, since when does anyone *pay* for therapy?! They give it away here like unwanted kittens. They even make you go when you don't wanna. It sounds like you've gotten more fishy (haha) advice in three weeks than I have all year, but I only hang out with experts. Solve both problems by finding a local ASO, like someone else said up above.

Unless you're "special" in some unfortunate way, you're going to be fine. Just find something else to obsess/compulse on. Perhaps your floors are dirty or your walls need scrubbing. If you're lucky, there's grout schmutz between the tiles in your bathroom.  You can kill a whole day scrubbing those.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline SteveS

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #22 on: June 12, 2013, 05:16:03 PM »
All -

ASO???

A moment of humanity - you all seriously have brought tears to my eyes with your understanding and compassion. I am naturally a very healthy person, I have great health insurance, and, if there was a "time" to catch this thing - it certainly is now rather than many years ago. Even in the three weeks I have been amazed at the progress - the Visconti group (14), the cracking of the capcid by the super computer, etc. It certainly seems that if not a cure, some kind of much more functional cure (once a month shot or something) is on the horizon.

Having said that - THANK you again....and oksikoko - YOU crack me up. Never a dull moment from you.

I promise you all once I have settled down with this -hopefully in the next several weeks - I will take the same care and compassion you have assisted me with and invest it in others....

Now - there has been this twitching in my left hand pinky finger......

Offline Miss Philicia

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #23 on: June 12, 2013, 05:17:51 PM »

As for therapy being expensive, since when does anyone *pay* for therapy?! They give it away here like unwanted kittens. They even make you go when you don't wanna.

Totally true in NYC, though this wasn't the case so much 15 years ago as when I first went I had to find a private one. He was like out of a movie -- Upper East Side, gay, Jewish, Eames recliner with a glass curtain wall looking out over an enclosed Japanese styled mini-garden.
"Iíve slept with enough men to know that Iím not gay"

Offline Joe K

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Re: Freaking out - please help - new Atripla / Facial Wasting?
« Reply #24 on: June 12, 2013, 06:52:23 PM »
Hey Steve,

I realize this is all very new to you and it's very normal to be overwhelmed at first.  Your numbers are good, you are being treated and you take good care of yourself, so you will not be dying any time soon.  My suggestion for you would be to train yourself to understand, that there are things in life that we absolutely have no control over.  Worrying about what "might" happen is a never ending quest.  Your mind will conjure as many scenarios as possible and you waste your time chasing ghosts.

My other suggestion is to learn what you "can" control and do it with a vengeance.  The best way to avoid feeling helpless, is to be proactive in dealing with your health and life.  By taking charge of what you can control, you will gain confidence in your ability to life a fairly normal life and stop wasting energy where it only drains your soul.

I'm another HIV dinosaur and I know that the best thing you can do, for you, is to become empowered and to work at controlling your anxiety.  You can do this and to be honest, if you expect to live a content life, you must do this.  You don't have to do it tomorrow, but the sooner you start, the better you will feel.

Welcome to the forums.

Joe

 


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