Not so very nice :-(

[vt5john]

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???     

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?   

[TabooPrincess]

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

[vt5john]

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

[Hellraiser]

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

[Ann]

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.

[WillyWump]

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

[tommy246]

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.

[mecch]

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!

[justus35]

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???

[vt5john]

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!!!!

[hotpuppy]

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. 

[mecch]

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!

[squaw]

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