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Author Topic: Not so very nice :-(  (Read 3765 times)

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Offline vt5john

  • Member
  • Posts: 23
  • to infinity and beyond
Not so very nice :-(
« on: May 27, 2010, 06:01:28 AM »
I'm new to this forum and being a newly diagnosed I have so many questions and worries.   A little rash here and there, a little headache, acnes.... OMG???    :o 

Aside from my Doctor and my partner - I don't really have a support system - but it's okay - it is my choice at least at this time.  I'm grateful to have found this forum. Thank God for the information super highway - I can get the latest and most accurate information regarding HIV treatment from the US and Europe all the way here in Thailand.   I joined this forum for (hopefully) the same reason as each and everyone of you i.e: to find comraderie, support as well as getting informative and accurate information regarding HIV.

I pm one of the member today to ask for his opinion on something, but was shocked when I received his reply with an opening statement "I'm not a doctor" - huh!!!   What have I done to offend this person???   I thought we're among friends here - and no question is a stupid question especially coming from a newbie like me.    Should I be afraid to ask questions or to PM anyone in this forum now?   
Apr 2009 - noticed red dots on my body
Feb 2010 - Shingles on my chest - panicked!
Feb 20, 2010 - Found out :-( :-(
Feb 23, 2010 - CD4 311 22% VL 29,000
Mar 06, 2010 - CD4 251 15%
Mar 06, 2010 - started meds: D4T 3TC NVP
Apr 05, 2010 - stop NVP (Hypersensitive)
Apr 05, 2010 - Switched: D4T 3TC Kaletra
May 14, 2010 - Switched: Tenofovir-300 3TC Kaletra
June 10, 2010 - CD4 342 19% VL <40
July 13, 2010 - Reduced: Tenofovir-200 3TC Kaletra
Sept 21, 2010 - CD4 423 23.1% VL < 40
Oct 15, 2010 - Dr. Concerned with high Cretinine lvl - dropped Tenofovir-200
Oct 15, 2010 - 3TC Kaletra
Jan 17, 2011   - CD4 498 23.36%

Offline TabooPrincess

  • Member
  • Posts: 279
Re: Not so very nice :-(
« Reply #1 on: May 27, 2010, 06:14:04 AM »
seems a bit strange that you picked a random person to message?  Why not ask your question to everyone and then those who wish to respond can and those you don't....well they don't have to.

Just a thought.  Welcome anyway, I think you will find lotsof support here
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline vt5john

  • Member
  • Posts: 23
  • to infinity and beyond
Re: Not so very nice :-(
« Reply #2 on: May 27, 2010, 06:24:16 AM »
Hi TP:  No I didn't pick a random person to PM - I did a research and this person has used a certain medication in the past - I just want his opinion that's all... thank you for your reply
Apr 2009 - noticed red dots on my body
Feb 2010 - Shingles on my chest - panicked!
Feb 20, 2010 - Found out :-( :-(
Feb 23, 2010 - CD4 311 22% VL 29,000
Mar 06, 2010 - CD4 251 15%
Mar 06, 2010 - started meds: D4T 3TC NVP
Apr 05, 2010 - stop NVP (Hypersensitive)
Apr 05, 2010 - Switched: D4T 3TC Kaletra
May 14, 2010 - Switched: Tenofovir-300 3TC Kaletra
June 10, 2010 - CD4 342 19% VL <40
July 13, 2010 - Reduced: Tenofovir-200 3TC Kaletra
Sept 21, 2010 - CD4 423 23.1% VL < 40
Oct 15, 2010 - Dr. Concerned with high Cretinine lvl - dropped Tenofovir-200
Oct 15, 2010 - 3TC Kaletra
Jan 17, 2011   - CD4 498 23.36%

Offline Hellraiser

  • Member
  • Posts: 4,143
  • Semi-misanthropic
Re: Not so very nice :-(
« Reply #3 on: May 27, 2010, 08:12:18 AM »
Hi TP:  No I didn't pick a random person to PM - I did a research and this person has used a certain medication in the past - I just want his opinion that's all... thank you for your reply

Did you open with that?  "Hey I saw you had used this medication and I as just curious of your experience with it, Sorry to bother you!"  or something to that effect?  Some people just don't necessarily respond well to PMs from people they don't know extremely well

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Not so very nice :-(
« Reply #4 on: May 27, 2010, 10:16:45 AM »
vt, it is possible that the person in question just wanted to make that clear - rather than cause offence. It's surprising how many people sometimes think others here have some sort of medical training when they do not.
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

Online WillyWump

  • Member
  • Posts: 7,277
Re: Not so very nice :-(
« Reply #5 on: May 27, 2010, 10:30:38 AM »
Why not ask your question to everyone and then those who wish to respond can and those you don't

Hi VT,

Yes, you should ask your question here in the open forums, you will get a ton of good info and experiences regarding your regimine :) Your among friends here.

I agree with Ann, perhaps the person was just issuing a disclaimer that he wasnt a doctor...it's common to see this in posts . Ie... " I'm not a doctor, but...".
Also, remember, you should assume no one is a doctor on here unless they identify themselves as such.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline tommy246

  • Standard
  • Member
  • Posts: 435
Re: Not so very nice :-(
« Reply #6 on: May 27, 2010, 02:37:23 PM »
Hi john welcome to the forum the large majority of people on here are extremely helpful and many well informed i have recieved fantastic help and information snce my diagnosis dec 2008 i suppose there is always one bad egg in every basket. As a poster mentioned above posting in the main forum is the best way unless its something really personal . If you want to ask a doctor a question there is a website ran by a dr gallant a top american hiv specialist who provides an amazing service answering questions maybe someone can post a link for you.I think its the johns hopkins website.
In the meantime feel free to pm me anytime about anything sometimes its just could to write things down when recently diagnosed good luck Tommy.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Online mecch

  • Member
  • Posts: 12,158
  • red pill? or blue pill?
Re: Not so very nice :-(
« Reply #7 on: May 27, 2010, 02:54:02 PM »
I am the guilty party!  :-[

VT5John,

I am sorry if what I said seemed rude.  I think its a cultural difference. As I subsequently clarified in two more PMs - the information you gave me about accutane does not match the use of it I have experienced personally and know about, in the US and in Europe.

You said that once a doctor gave you one week of accutane and your face cleared.  I took accutane years ago and it was then and still remains a treatment that takes several months.  So your question doesnt make sense to me and also, as I said, I am not a doctor.

It seemed to me, reading between the lines, you really want this accutane, and that the acne is really bothering you.  It seemed to me, that you were looking for me to give you support for taking accutane, while in fact you reported that your doctor already said that you can both discuss that at the appropriate time, which is not now.

That is why I said I was not a doctor. To make it clear that my advice wasnt worth much, compared to what your doctor has already told you. 

Many times newbies come into these forums and are a bit over concerned about an medical issue, or drug issue, or symptom, and no matter what any of us say, and no matter what their own doctors say, they can't hear the message. 

The message is - all in due time, and with a doctors advice. 

I know a pimply face is pretty damn awful so I do sympathize with you there.  But as your doctor explained, you have other priorities at the moment. 

Again, sorry if you took this wrong, and I thought I clarified it.

Now you have heard the same possible explanations for my "rudeness" from other members so I hope you can understand, it is nothing personal.

Best to you!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline justus35

  • Member
  • Posts: 20
  • I AM STILL STANDING
Re: Not so very nice :-(
« Reply #8 on: May 28, 2010, 09:11:56 AM »
I have pm several people people about questions that were going through ,went through ,or experience  somthing that I had as well REALLY??? non of them were nasty , all very polite ,are we not suppose to do that? because I didnt know , but its always to good to have tact when responding if one is not doing the right thing per say , with no harmful intent is intended ,the last thing that you wanna think is someone judging you ,and being hateful on here, this is place to get info so weather its posted in the wrong place or you pm someone  worse things has happned ...REALLY???
SELF MADE -DOING IT FOR MYSELF

Offline vt5john

  • Member
  • Posts: 23
  • to infinity and beyond
Re: Not so very nice :-(
« Reply #9 on: July 22, 2010, 11:17:26 PM »
Hi all - I'm back.   Just got back from a month long vacation to just kinda unwind, sorted out my priorities and get back on tract so to speak.  Thank you all for your kind replies.

First and foremost, I would like to apologize to mecch.   You're absolutely right - your reply was not what I wanted to hear and right away I accused you of being rude and not very helpful.   I was shocked and devastated when I found out that I'm positive - life goes on.   BUT when I got pimples all over my upper shoulder and face - life ended and I wanted to jump off the building  >:(   Now you know where I have been putting my priority.    ::) 

Taking your advice I talked to my doctor about my pimple outbreak.   According to him it is most likely because of my low cd count as well as side effect of my meds.   The acne (Acne Vulgaris) is caused by bacteria (Propionibacterium) in the pores.   He prescribed topical cream - a combination of Benzoyl Peroxide and Clindamicyn.  Within a few days of using this topical cream my skin condition improved tremendously.  I'm still getting these ugly pimples but not as bad as before and at least I know how to maintain it now. 

I also got my last complete blood count and happy to inform you that the numbers are quite good: CD4-343, 19%, VL-<40.

BUT my Total Cholesterol (209) and Triglyceride (230) are high - most likely the side effect of Kaletra.   Also for some reason my doctor is very concerned with my Creatine level of 1.2 - which I thought was within normal range.  He said because of my weight (59.5kg) it should be much lower than 1.2.   He is contemplating switching Tenofovir with Efavirenz.

Again thank you all for your replies.   Mecch, I hope you accept my apology.   Glad to be back!!!!



Apr 2009 - noticed red dots on my body
Feb 2010 - Shingles on my chest - panicked!
Feb 20, 2010 - Found out :-( :-(
Feb 23, 2010 - CD4 311 22% VL 29,000
Mar 06, 2010 - CD4 251 15%
Mar 06, 2010 - started meds: D4T 3TC NVP
Apr 05, 2010 - stop NVP (Hypersensitive)
Apr 05, 2010 - Switched: D4T 3TC Kaletra
May 14, 2010 - Switched: Tenofovir-300 3TC Kaletra
June 10, 2010 - CD4 342 19% VL <40
July 13, 2010 - Reduced: Tenofovir-200 3TC Kaletra
Sept 21, 2010 - CD4 423 23.1% VL < 40
Oct 15, 2010 - Dr. Concerned with high Cretinine lvl - dropped Tenofovir-200
Oct 15, 2010 - 3TC Kaletra
Jan 17, 2011   - CD4 498 23.36%

Offline hotpuppy

  • Member
  • Posts: 555
Re: Not so very nice :-(
« Reply #10 on: July 23, 2010, 03:03:23 PM »
John,
 Welcome to the forums.  I would recommend posting a thread about a med as opposed to PM.  This will give you a wider range of feedback and may be more efficient.

  I would also recommend updating your location as some advice is location specific.  What is customary or first-line meds in one country isn't always the same in other countries for a variety of reasons. 
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Online mecch

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  • Posts: 12,158
  • red pill? or blue pill?
Re: Not so very nice :-(
« Reply #11 on: August 07, 2010, 11:00:59 AM »
I knew you could find relief and glad its happening. Surely the stress of learning you were HIV+ and the low CD4 will soon be clouds in the past. 
Apology accepted, too, you're sweet to do that!  Best wishes!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline squaw

  • Member
  • Posts: 39
Re: Not so very nice :-(
« Reply #12 on: August 07, 2010, 11:20:00 AM »
Nevermind, I didn't read all the posts before expressing my opnion.  Had to go back and delete it.

Good luck to you and I wish you the best of health.

squaw
« Last Edit: August 07, 2010, 11:31:36 AM by squaw »

 


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