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Author Topic: Got the news 3 days ago  (Read 7459 times)

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Offline minatl

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Got the news 3 days ago
« on: December 21, 2013, 10:36:15 PM »
So I was tested 2 years ago when I had a strange bump on my penis, and negative.  We just recently moved, and I had to find a new doctor.  Decided to go with a gay doctor since we moved to "a big city".   Went ahead and had a full blood panel done (including STD/HIV testing) since it had been a while.  Background:  I'm 39 years old, have been sexually active for 19 years, and have pretty much always had unprotected sex (despite "knowing better").  I met my partner in 2006.  We moved in together the end of 2006, and were exclusive.  In 2011, due to a job change with a long distance, we mutually decided to have an open relationship.  Fast forward to this year...we finally move across the country so we can have a "normal" life again.  Relationship remains open, as it works for us..but not really as necessary as before.  Stupid me..in a new town, I had to check out the "scene" and engaged in careless unsafe sex.  When I got my results the other day, I just had to lay down..I felt like all of the blood had been drained from my body.  I was numb...and really didn't hear much of what the doctor said after she gave me my results.  I now assume that the follow up blood work I had that day was to do the Western Blot and to determine VL and CD4 levels.  I have a follow up appointment January 20th.  I was going crazy, until I found this site.  I cannot thank each of you that has posted and responded to others posts enough.  I have found so many answers to so many questions, along with calming so many fears and confirming many feelings I have.  So...again, thank all of you for being here, for all of us!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline mecch

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Re: Got the news 3 days ago
« Reply #1 on: December 22, 2013, 05:45:26 AM »
You can't know for sure until you get wb confirmation.
If you are HIV+, that will be a pity but as you see reading this forum, its manageable enough and life goes on.

Some of your post is about your sexual history and practices being at odds with your knowledge about safer sex.

I am sorry you have to go through this shocking period.  I was HIV neg for 25 years and many of those years I had an HIV test and was always a little bit apprehensive so I was always aware of the risk. Also had HIV+ friends and boyfriends along the way. Also that little thing called the AIDS crisis when so many people were dying. So yeah diagnosis was a shock but in another way, I could remember I was always living and screwing in a world where this virus is present.  It helped me to take some distance, composure and rationality, and downplay all the flooding fears and emotions, existential questions, and remember its simply a virus and doesn't have ANYTHING especially articulate to say about who I am, or how I lived my life, or how I had sex.

People make all kinds of decisions around sex and some of them provide rewards and some of them unwanted consequences.   
« Last Edit: December 22, 2013, 05:48:21 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline minatl

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Re: Got the news 3 days ago
« Reply #2 on: December 22, 2013, 01:42:45 PM »
mecch-thanks for your reply and thoughts.  I always knew I was taking a risk, and I guess somehow in my mind, knew this would end up being a reality.  Of course I don't know the results of the WB yet, but given the way I've felt, and an "unexplained" illness 4 months ago (flu-like symptoms, fatigue, sore throat, diarrhea, etc.), I am expecting a + result, and have begun to "accept" that as a reality already.  According to my last HIV test in 2011, by "reactive" rate was less than 1, and this test was 4 or 5.  Again, so much of my conversation (unfortunately) with the doctor that day is a blur. 

When I go for my follow up appointment on Jan. 20th, my partner is going with me..to help me understand, ask questions, and just for general support.  I am extremely fortunate to have a very wonderful and supportive man, that I love very much.  He is the only one I've discussed this with (and here of course), and at this point plan to keep it that way.
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline vertigo

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Re: Got the news 3 days ago
« Reply #3 on: December 22, 2013, 02:58:45 PM »
Hi minatl and welcome to the boards.  Sounds like you are dong a good job adjusting to the dx.  It takes some time, at least for most of us.  You are fortunate to have a supportive partner.  It often doesn't work out that way.

Just curious, since you live in the US and I assume are seeing a private physician, why the long wait for the follow-up visit?  You should be able to get WB, VL, CD4 all back within a week.  Genotyping will take a little longer, but this is all pretty standard.  Not trying to make you nervous -- you're going to be fine regardless -- but you're going to get to know your doctor pretty well, and want the best standard of care available.  Unless you're using the public healthcare system, that's not a one-month wait for a follow-up on an initial poz result.  Or perhaps all this is already in progress and your next visit is to discuss results?

Best wishes and keep us posted with how you're doing, both physically and emotionally.
« Last Edit: December 22, 2013, 03:04:04 PM by vertigo »

Offline minatl

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Re: Got the news 3 days ago
« Reply #4 on: December 22, 2013, 03:09:24 PM »
Vertigo - I do remember her saying she was doing genotyping.  So I supposed she is waiting until everything is back?  It's possible with the Holidays, things could take longer?  I am going to call the office tomorrow and see if I can speak to her, to clarify things.  The doctors office I go to is strictly ID, although I see the Physicians Assistant rather than the doctor.  This doctor has been featured in various articles and is highly regarded, so I feel fairly confident in the ability of my care providers. 

I am very fortunate to have a level headed and supportive partner.  I know things could get rough, but will all be ok and the new "normal".  Thanks for your thoughts and wisdom!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline vertigo

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Re: Got the news 3 days ago
« Reply #5 on: December 22, 2013, 03:29:52 PM »
OK, perhaps I was being alarmist.  Sounds like everything is on track, as it should be.  And it also sounds like you are fully engaged in your healthcare, which is way better than being a passive participant as far as long-term outlook is concerned.  Heck of a holiday surprise to process, eh?  Glad you found us here.

Offline mecch

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Re: Got the news 3 days ago
« Reply #6 on: December 22, 2013, 03:41:07 PM »
I agree with Vertigo.
You should call the ID office. Maybe they confirmed the WB when you were in last time and you misunderstood.  But if you don't have a confirmation, I don't see ANY reason for waiting 4 weeks to get one.

Also, as an aside. Your partner should be tested if this hasn't been done already.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline minatl

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Re: Got the news 3 days ago
« Reply #7 on: December 22, 2013, 03:48:27 PM »
Vertigo...I agree.  That is one thing I remember the Doctor saying just before I left for blood work.  She said "Try not to think about it, and don't let it ruin your holiday".  Ummm...right!!

Mecch..That is very possible.  I'm going to call tomorrow, and hope that I can reach her.  Also, I believe my partner is going to "sign up" for this same doctor, and be tested.  He's not much for doctors, but it's time for him to see one.  We may as well both go to the same place.

Very thankful for this forum.  I'd be much more of a wreck than I am if I hadn't!!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline leatherman

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Re: Got the news 3 days ago
« Reply #8 on: December 22, 2013, 08:13:18 PM »
He's not much for doctors, but it's time for him to see one.  We may as well both go to the same place.
are you seeing a GP doctor? Because if your partner isn't poz  he won't be needing an ID (infectious disease) doc ;) LOL

also your partner doesn't have to see any doctor at all - at the first. You partner just needs to get tested ASAP for HIV and other STDs. Try the local health dpt. or an AIDS service organization. They do testing for free - which means you won't have to pay and it won't show up on anyone's insurance
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline minatl

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Re: Got the news 3 days ago
« Reply #9 on: December 22, 2013, 08:30:56 PM »
I chose this doctor, who happens to be an ID doctor, because he was gay.  He is ok with being the PCP...we just pay a little bit more to see him, but he understands the gay "scene" and "lifestyle", etc. 

Hoping my partner will be tested.  He basically has never really wanted to know...we have some different views on it, but we are each our own individuals. 

Thanks for the info..and I will pass it on, in case he is worried about his testing being on insurance, etc...
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline minatl

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Re: Got the news 3 days ago
« Reply #10 on: December 22, 2013, 08:32:58 PM »
Oh..and Mecch and Vertigo...I called the doctors office a few hours ago and asked for the doctor to call me tomorrow so she can answer some questions for me.  I'll keep you posted as I have access to a computer over the next few days while traveling.
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline minatl

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Re: Got the news 3 days ago
« Reply #11 on: January 01, 2014, 02:06:25 PM »
So I'm slightly irritated at the moment.  I did call the Doctors office and left a voicemail on the 22nd, hoping for a call back on the 23rd.  I was traveling for the holidays, but had my phone.  No return call.  Here it is January 1, and there has been no attempt to call me back.  I was out of state until Monday, and figured with the various holidays, perhaps the doctor was out.  Of course they are not there today, so I will try and call tomorrow.  Should the be the normal "M.O.", I think I may have to look in to finding a new ID Doc.  Thoughts anyone?  At this point, unanswered questions linger, such as if Western Blot has been done, what my counts are, and why the genotyping...and shouldn't the results of the blood work drawn on 12/18 be back by now?
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline watl

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Re: Got the news 3 days ago
« Reply #12 on: January 01, 2014, 02:43:03 PM »
Seems like you'd have gotten a return call by now. Are you in Atlanta and if so who do you use? 

Offline minatl

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Re: Got the news 3 days ago
« Reply #13 on: January 01, 2014, 02:53:21 PM »
Seems like you'd have gotten a return call by now. Are you in Atlanta and if so who do you use?

Yes...I'm in Atlanta.  Dr. Ouederkirk, but seen by the PA, Dr. Sawyer.  Is there someone better in ATL?
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline watl

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Re: Got the news 3 days ago
« Reply #14 on: January 01, 2014, 03:01:40 PM »
I don't honestly know though I did come across that name when first looking and he was highly rated. I suppose if you don't ever see him or if they don't call you back it doesn't matter though ;). I went with absolute care mainly because they were also highly rated *and* they do all their labs in house and also are general practitioners. Everything is under one roof. I didn't get the impression ouderkirk offered that being in Atlantic station. I really didn't want to drive all over and have to continuously disclose, but those are probably my own issues.

Offline minatl

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Re: Got the news 3 days ago
« Reply #15 on: January 01, 2014, 03:05:38 PM »
watl,

This ID group is the same way.  You can have them as a GP even if you are hiv-, etc...but nice to have a gay doctor that understands the lifestyle, etc.  Much different than the conservative doctor  I had before I moved.  I'm going to stick with them for the time being.  I will call them tomorrow and see where I get with them.  If not, I'll be looking for care elsewhere. 

Hope you are well.  Happy  New Year!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline watl

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Re: Got the news 3 days ago
« Reply #16 on: January 01, 2014, 03:10:25 PM »
If I had to say who I thought best was it would probably be Emory but their first available appointment was further out than I felt comfortable with. I still don't rule out going there at some point in the future but I am very satisfied with absolute care at this point. They got me in within a week, spent literally hours with me the first appointment and everyone there has been very nice.

Offline minatl

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Re: Got the news 3 days ago
« Reply #17 on: January 01, 2014, 05:20:38 PM »
If I had to say who I thought best was it would probably be Emory but their first available appointment was further out than I felt comfortable with. I still don't rule out going there at some point in the future but I am very satisfied with absolute care at this point. They got me in within a week, spent literally hours with me the first appointment and everyone there has been very nice.

I will keep that in mind.  Hopefully things will smooth out where I am, since the holidays are behind us.  Whatever road is necessary to get/keep me healthy needs to start ASAP.  I don't want to wait...

DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline minatl

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Re: Got the news 3 days ago
« Reply #18 on: January 16, 2014, 01:15:37 PM »
Hi guys...had my follow up today.  CD4 was 364, VL 23K.  Starting Stribild tomorrow.  The office visit was a little better this time, a little more thorough, so I may stick with them.  They got the copay assistance card, so my RX should cost zero.  Went over other meds and answered my questions.  Doc says low grade fever related to body fighting HIV with no help.  I've been suffering from Insomnia/Fatigue.  She advised to take an OTC sleeping pill to see if that helps, but said some of the fatigue could be related to fighting HIV, and I have sleep apnea..so unsure.  Follow up in a month and see how things go..

I have good days and bad.  Glad to be starting my therapy, and hope I will "feel" better and be able to move forward with life.

Hope you all are doing well!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Cheltlee

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Re: Got the news 3 days ago
« Reply #19 on: January 16, 2014, 05:45:54 PM »
Hi Minatl,

Just new to this forum and in the early stages of dealing with the condition myself, I do however want to tell you a little bit of what I was going through just before I started my meds.

I too was suffering from a sort of fever, as well as many other symptoms. My CD4 was 17 and I also had AIDS related wasting, night sweats etc..

Was not long after I started the Meds that this all quickly disappeared, I know everyone reacts different but you are starting treatment at a much more desirable stage than I did, I would be very hopefully that you too start to see a improvement in how you 'feel' fairly quickly.

Good luck and hope to hear of your improvement over the next few months.
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline minatl

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Re: Got the news 3 days ago
« Reply #20 on: January 16, 2014, 06:20:10 PM »
Cheltee,

I'm certainly glad you got started on the meds when you did, and things have progressed in the right direction.

I was very thankful my numbers were ok.  The way I was feeling physically scared me..I figured I might be worse off than I was.  I suffer chronic sinus infections, so my immune system isn't 100% to start with.

Glad to know you..I'll keep you posted on my progress, and look forward to hearing about yours!
M
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline minatl

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Re: Got the news 3 days ago
« Reply #21 on: January 22, 2014, 12:49:01 PM »
After almost a week of phone calls and voicemails, I may finally have my Stribild tomorrow.  The doctors office surely showed their incompetence on this one, and I feel there's no choice but to find a new ID group.  First, the pharmacy never got the RX, then there were issues with the insurance having to do a "clinical review" before approving the RX (not the dr. offices' fault), then a call from my regular pharmacy that a different RX was called in, and needed to call the insurance company, 2 unanswered calls to the doctors office, a random call from Walgreens with instructions on how to get it filled, a phone call to the RX Specialty Pharmacy...and one more confirmation call to Walgreens.  Ugggghhh!!!!!!!!  Am I being a bitchy queen in thinking the doctors office should be a little more reliable and helpful than this? 
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline mecch

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Re: Got the news 3 days ago
« Reply #22 on: January 22, 2014, 01:52:00 PM »
Sounds very annoying. 
Can't you work with scripts written on paper, going forward. The office gives it to you. You bring it to the pharmacy.  Old-fashioned....  They don't do that anymore in the US?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline minatl

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Re: Got the news 3 days ago
« Reply #23 on: January 22, 2014, 01:57:02 PM »
Sounds very annoying. 
Can't you work with scripts written on paper, going forward. The office gives it to you. You bring it to the pharmacy.  Old-fashioned....  They don't do that anymore in the US?
I would prefer it that way, but apparently, my insurance company will only fill through the specialty pharmacy, which is mail order.  I wish there was another way, but I guess this is my only option.  Hopefully there will be no more snags when I go to get refills.  Either that, or there is an ID group locally that has their own pharmacy, which may be covered...
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Ann

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Re: Got the news 3 days ago
« Reply #24 on: January 22, 2014, 04:13:18 PM »
Sounds very annoying. 
Can't you work with scripts written on paper, going forward. The office gives it to you. You bring it to the pharmacy.  Old-fashioned....  They don't do that anymore in the US?

Don't you read the insurance forum with any regularity Mecch? (Because of insurance concerns, that's where most discussions over how scripts are issued take place.) The current trend in the American insurance industry seems to be trying to make it as difficult as they possibly can for patients to get meds, particularly more expensive meds like ARVs. It's unbefuckinglievable.

I thank my lucky stars every single day that if I had to end up with an serious medical condition, at least I got it while living in a part of the world where my medical needs are taken care of without the meddling of for-obscene-profit insurance companies. The NHS ain't perfect by a long shot, but it's pretty damn good all the same.

When I see my doc, he hands me a script that I take downstairs to the hospital's in-house pharmacy, hand it in, and walk away ten minutes later with four months of meds, without any hassle or expense. I fervently wish all our forum members could do the same. :-\
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 minatl

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Re: Got the news 3 days ago
« Reply #25 on: January 22, 2014, 04:36:28 PM »
Don't you read the insurance forum with any regularity Mecch? (Because of insurance concerns, that's where most discussions over how scripts are issued take place.) The current trend in the American insurance industry seems to be trying to make it as difficult as they possibly can for patients to get meds, particularly more expensive meds like ARVs. It's unbefuckinglievable.

I thank my lucky stars every single day that if I had to end up with an serious medical condition, at least I got it while living in a part of the world where my medical needs are taken care of without the meddling of for-obscene-profit insurance companies. The NHS ain't perfect by a long shot, but it's pretty damn good all the same.

When I see my doc, he hands me a script that I take downstairs to the hospital's in-house pharmacy, hand it in, and walk away ten minutes later with four months of meds, without any hassle or expense. I fervently wish all our forum members could do the same. :-\
That sounds like a breeze, Ann.  I will do what I have to in order get my meds and stay healthy....
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Ann

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Re: Got the news 3 days ago
« Reply #26 on: January 22, 2014, 05:00:09 PM »
That sounds like a breeze, Ann.  I will do what I have to in order get my meds and stay healthy....

Good Min, glad to hear it. You will be ok, you know. It gets better with time, so hang in there and keep reaching out here.

Welcome to the forum, by the way. I meant to say that in my other post, so sorry for the delay. :)
Condoms are a girl's best friend

Condom and Lube Info  



"...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 minatl

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Re: Got the news 3 days ago
« Reply #27 on: January 22, 2014, 05:02:30 PM »
Good Min, glad to hear it. You will be ok, you know. It gets better with time, so hang in there and keep reaching out here.

Welcome to the forum, by the way. I meant to say that in my other post, so sorry for the delay. :)

Thanks, Ann.  I am so glad I have this forum.  I think I'd go crazy without it!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Cheltlee

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Re: Got the news 3 days ago
« Reply #28 on: January 23, 2014, 07:30:27 AM »
I have to agree Ann, as much as the NHS is slated, I am so thankful they are there and the medical treatment I have received is second to none. Its as simple as if my medical treatment had been delayed then I wouldn't of been here today.

I hope things get a lot more straight forward for you Minatl and I'm sure they will.

Lee
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline Ann

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Re: Got the news 3 days ago
« Reply #29 on: January 23, 2014, 09:20:09 AM »

I have to agree Ann, as much as the NHS is slated, I am so thankful they are there and the medical treatment I have received is second to none.


Yes, it often makes me quite angry when people slate the NHS. They're always people who have never lived under any other health care system and have no idea how good they have it.

I lived in the States and know how broken their system was 20+ years ago (before I upped sticks and moved) and it's only gotten worse in the meantime. I'm hoping the ACA makes it better for people, but there's still a long way to go to making it fair and providing universal healthcare access like we have here. I'm grateful beyond words for the NHS.
« Last Edit: January 23, 2014, 09:22:45 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...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 wolfter

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Re: Got the news 3 days ago
« Reply #30 on: January 23, 2014, 09:27:40 AM »
I thought I heard something recently about the NHS system collapsing and did a quick "google". 

http://rt.com/news/uk-nhs-health-crisis-049/

Sorry, welcome aboard to the OP

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

Offline Ann

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Re: Got the news 3 days ago
« Reply #31 on: January 23, 2014, 09:41:07 AM »
I thought I heard something recently about the NHS system collapsing and did a quick "google". 

http://rt.com/news/uk-nhs-health-crisis-049/

Sorry, welcome aboard to the OP

wolfie

You have to understand that we get exaggerated, scare-mongering stuff in the press here all the time - and usually it comes from right-wing type people and/or organisations who would love to see a for-profit system implemented here. I mean, if you went by what the Daily Hate Mail (for example) has to say about the NHS, the NHS collapsed yesterday. ::)

Like I said yesterday, the NHS isn't perfect, but it's damn good all the same.

Urm... anyway, this isn't the place for this discussion so I shall bow out now.
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Offline minatl

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Re: Got the news 3 days ago
« Reply #32 on: January 24, 2014, 12:53:34 PM »
Received my Stribild right at the front door last night.  Took my first one at 8pm.  So far, so good.  Woke up once completely drenched from a night sweat...wasn't sure if that was med related or just because I've had a cold lingering...any input?
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline leatherman

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Re: Got the news 3 days ago
« Reply #33 on: January 24, 2014, 05:03:02 PM »
wasn't sure if that was med related or just because I've had a cold lingering...any input?
you do realize that your body will be going through quite an array of drastic changes as it adjusts to obtaining a constant level of anti-HIV meds, a decreasing viral load, and an increasing cd4 count? many many people have to deal with headaches, nausea, diarrhea, vomiting, sleeplessness, fatigue, etc (the list of minor side effects for ART, or ANY other medication, is endless) during the first 2-6 weeks before a person adjusts to the treatment.

as always check the info on the package insert (google the name of your med and "package insert"). You'll see that there is a 16% chance of you puking from Stribild (probably in only those first few days) and a 0% of night sweats. (which just means it wasn't reported enough to even garner a 1% chance). So hang in there. :D you could have also been sweating from having the heat up too high or from simply being so anxious about taking a new medication before going to bed.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline minatl

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Re: Got the news 3 days ago
« Reply #34 on: January 24, 2014, 05:31:58 PM »
Thanks, Leatherman.  I sure was anxious about starting the med, but so glad I have finally started.  I have high hopes for mild or zero side affects, but I know they can happen.  I'm really just anxious to be a few months down the road, adjusted to the meds, and hopefully feeling a lot better! 
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline leatherman

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Re: Got the news 3 days ago
« Reply #35 on: January 24, 2014, 06:26:20 PM »
I'm really just anxious to be a few months down the road, adjusted to the meds, and hopefully feeling a lot better!
It'll happen!  ;) the anxiety of the diagnosis and when first taking meds is terrible, nobody denies that. All we can do though is use that anxiety to be proactive about our health (eat better; exercise; take meds; live, love and laugh a lot more), and you do seem to be trying to do all that. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline minatl

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Re: Got the news 3 days ago
« Reply #36 on: January 24, 2014, 06:37:43 PM »
It'll happen!  ;) the anxiety of the diagnosis and when first taking meds is terrible, nobody denies that. All we can do though is use that anxiety to be proactive about our health (eat better; exercise; take meds; live, love and laugh a lot more), and you do seem to be trying to do all that. ;)

Yes...mentally, I'm doing better than I was.  Still struggling with lack of energy some days..but doing my best to walk 4 miles on the treadmill 5 days a week.  I eat fairly well now...could be better, so working on that...along with reading up on the med to see what supplements I may want to take to help with other things affected.  Very grateful for love and laughter...and thankfully, a lot of that here with my wonderful partner.
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Cheltlee

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Re: Got the news 3 days ago
« Reply #37 on: January 24, 2014, 09:07:39 PM »
Hi Minatl,

Glad to hear you have your meds now and have starting taking them, your numbers are about right to start on the meds, relatively speaking you are in a good place with it. Try not to be worried about it, you will be fine and hopefully you will feel a difference in yourself soon.

Your body is going through a lot just having to fight the virus, even though you are a good stage with you CD4 to start taking the meds. When your VL comes down and comes under control I'm sure you will feel a difference and who knows, that lack of energy might disappear as well.


Lee
September 2013 - Diagnosed CD4 17, VL 330,000
September 2013 - Diagnosed PCP
Started Truvada - Darunavir - Ritonavir -
Co-trimoxazole - Azithromycin
October 2013 - CD4 74, VL 5500
December 2013 - CD4 100, VL 70
February 2014 - CD4 106, VL 69

Offline minatl

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Re: Got the news 3 days ago
« Reply #38 on: January 25, 2014, 12:09:11 PM »
Hi Minatl,

Glad to hear you have your meds now and have starting taking them, your numbers are about right to start on the meds, relatively speaking you are in a good place with it. Try not to be worried about it, you will be fine and hopefully you will feel a difference in yourself soon.

Your body is going through a lot just having to fight the virus, even though you are a good stage with you CD4 to start taking the meds. When your VL comes down and comes under control I'm sure you will feel a difference and who knows, that lack of energy might disappear as well.


Lee

Lee,

Thanks for the words of encouragement.  I feel like everything in my life is up in the air at this point, but I'm trying to keep it together.  I'm trying to find work, have terrible insomnia (even with a sleep med), and am just generally fatigued.  I know it will get better, and things will fall into place as they should.  Taking one day at a time.

You seem to be making great progress, yes? :)

Matt
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline JosephP

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Re: Got the news 3 days ago
« Reply #39 on: January 30, 2014, 10:06:11 PM »
minatl,
Although I have been recently diagnosed (9/2013) I haven't had the guts to even post a comment here! Reading your comments gave me the balls to do it! Sorry we have to meet under these circumstances but here we are... Sorry you had problems with your ID office. Me, on the other hand, have nothing but praise for my doctor and her nurses..What a bunch of dedicated people. They are the poster child for caring and understanding. Unfortunately you are not nearby... I was diagnosed when I applied for new life insurance and imagine the shock when I got a phone call from the insurance doctor's office asking for my primary's information...I remember the numbness when told...I almost fainted and for a few minutes I was in another planet! I left that office and decided to have lunch as it was midday...I dont remember how I got to the Wendy's!!! The next few days are a blur....full of anxiety...nerves...fear...sadness..self pity and the need to be in control....I was started on Atripla as the insurance didn't approve Stribild...Horrible nighmares...Horrible..But here is where I found how great the ID group is...They went to bat for me and two days later, I had the Stribild on my hands!! So far it hasn't been too bad...Most of the side effects have gone away...So far the worst is the tiredness I feel and once in a while I feel like I am having a low grade fever...I lost weight but have since recovered half of it. My appetite is not the same, but is back!! Don't get me wrong...I am still very scared. I have become a fanatic of the time I should take my pill and won't leave my house without a pill in my pocket. I am squiddish of anyone touching me, hugging me or the famous hello air-kiss with anyone. People had notice my change.. I used to push, shove, touch, hug and otherwise have lots of physical contact with my coworkers, friends and family. Not really anymore. When I get a cut, I panic. But hang in there....I have been reading these posts and there are great people here and we can draw from their expertise!!! My VL in November was 26 and I will see my ID next Tuesday... Hopefully we are undetectable by then!! :) :) :) :)
« Last Edit: January 30, 2014, 10:16:31 PM by JosephP »
We are all dealing with this. And we will live long and productive lives!!

Offline leatherman

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Re: Got the news 3 days ago
« Reply #40 on: January 31, 2014, 12:38:24 AM »
My VL in November was 26 and I will see my ID next Tuesday... Hopefully we are undetectable by then!!
here's a thought that might help you all feel better about your viral load - not too many years ago within this decade, undetectable was <500! Yes you read that right 500. then it was 400, then 250, then 100, then 70, 40, 20. That's all because the tests have all gotten more accurate - not that we are any more "sick" at that higher or lower level. "undetectable" is just a point of how accurate a test can be. Actually right now there are tests that I think go down to 5 or 2 or something ridiculous like that.

Of course, undetectable is a state that all patients hope to reach and remain; but worrying any about the difference between 26 and 20 is just wasted time ;)

Quote
Optimal viral suppression is generally defined as a viral load persistently below the level of detection (<20–75 copies/mL, depending on the assay used)
"Undetectable - by whose standard"
http://www.positivelyaware.com/2011/11_05/undetectable.shtml
here is a great article about viral load history, assays, and what it all means
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline minatl

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Re: Got the news 3 days ago
« Reply #41 on: January 31, 2014, 11:30:11 AM »
minatl,
Although I have been recently diagnosed (9/2013) I haven't had the guts to even post a comment here! Reading your comments gave me the balls to do it! Sorry we have to meet under these circumstances but here we are... Sorry you had problems with your ID office. Me, on the other hand, have nothing but praise for my doctor and her nurses..What a bunch of dedicated people. They are the poster child for caring and understanding. Unfortunately you are not nearby... I was diagnosed when I applied for new life insurance and imagine the shock when I got a phone call from the insurance doctor's office asking for my primary's information...I remember the numbness when told...I almost fainted and for a few minutes I was in another planet! I left that office and decided to have lunch as it was midday...I dont remember how I got to the Wendy's!!! The next few days are a blur....full of anxiety...nerves...fear...sadness..self pity and the need to be in control....I was started on Atripla as the insurance didn't approve Stribild...Horrible nighmares...Horrible..But here is where I found how great the ID group is...They went to bat for me and two days later, I had the Stribild on my hands!! So far it hasn't been too bad...Most of the side effects have gone away...So far the worst is the tiredness I feel and once in a while I feel like I am having a low grade fever...I lost weight but have since recovered half of it. My appetite is not the same, but is back!! Don't get me wrong...I am still very scared. I have become a fanatic of the time I should take my pill and won't leave my house without a pill in my pocket. I am squiddish of anyone touching me, hugging me or the famous hello air-kiss with anyone. People had notice my change.. I used to push, shove, touch, hug and otherwise have lots of physical contact with my coworkers, friends and family. Not really anymore. When I get a cut, I panic. But hang in there....I have been reading these posts and there are great people here and we can draw from their expertise!!! My VL in November was 26 and I will see my ID next Tuesday... Hopefully we are undetectable by then!! :) :) :) :)

JosephP,
I'm glad I could inspire you to post.  I am so glad I stumbled upon this site, and started communicating with the great folks here.  All of your feelings and emotions are valid, and I've certainly been through all of those.  Thankfully, I'm in a much better place than I was just a month ago..emotionally and physically.  Keeping my fingers crossed that it stays that way.  Keep us posted on your next lab results!
M
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline minatl

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Re: Got the news 3 days ago
« Reply #42 on: January 31, 2014, 11:31:30 AM »
here's a thought that might help you all feel better about your viral load - not too many years ago within this decade, undetectable was <500! Yes you read that right 500. then it was 400, then 250, then 100, then 70, 40, 20. That's all because the tests have all gotten more accurate - not that we are any more "sick" at that higher or lower level. "undetectable" is just a point of how accurate a test can be. Actually right now there are tests that I think go down to 5 or 2 or something ridiculous like that.

Of course, undetectable is a state that all patients hope to reach and remain; but worrying any about the difference between 26 and 20 is just wasted time ;)
"Undetectable - by whose standard"
http://www.positivelyaware.com/2011/11_05/undetectable.shtml
here is a great article about viral load history, assays, and what it all means

Thanks for the informative post, Leatherman!
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline JosephP

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Re: Got the news 3 days ago
« Reply #43 on: February 01, 2014, 10:08:04 PM »
Minatl,
Yes, Thank you. I really was scared at the beginning, I was really never angry for getting infected but I was very scared. I didn't know which way to go and didn't know which way to turn! Things are a little easier but you still get the creeps when you stumble across an article that describes our problem as a punishment from God or horror stories about the infection. As I said, I have been reading these posts but never posted until I read your post and for that I thank you. Let's hang in there and make the best of our circumstances!!!
We are all dealing with this. And we will live long and productive lives!!

Offline JosephP

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Re: Got the news 3 days ago
« Reply #44 on: February 01, 2014, 10:14:10 PM »
Leatherman, Thank you, man for your insights! This has really been a marathon! Yes, my doctor did explain to me that several years ago the standard was about 500 and that we the advent of new techniques and medication, it has dropped. She says that "undetectable" means that with current techniques the virus although present will not be detected. She also explained that reaching this goal means that a simple test will not detect the virus (like over the counter test). I am not sure exactly what the vL means in terms of health but I am learning as we go thru this run!!
We are all dealing with this. And we will live long and productive lives!!

Offline leatherman

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Re: Got the news 3 days ago
« Reply #45 on: February 01, 2014, 11:51:43 PM »
I am not sure exactly what the vL means in terms of health
really, the viral load doesn't mean much to your health. The VL is simply a count of much HIV is in your system

the problem lies in how much damage that level of HIV has done. Some people have high viral loads but haven't gotten "sick" per se. Others have had health issues with a low viral load. It all determines on how well your immune system works.

A high viral load however does mean that a lot of HIV has hijacked your immune system, created more copies of itself, and destroyed your immune system (the cd4s in particular, and that's how you get a low cd4 count). So usually a high viral load does mean low cd4s and health problems (especially when the cd4 count goes below 200).
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline JosephP

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Re: Got the news 3 days ago
« Reply #46 on: March 05, 2014, 09:46:54 PM »
Sorry guys...While I have been around and reading the posts I haven't shared much. I did go to the ID doctor and while my VL was undetectable, I had a terrible cold and my CD4 dropped a bit. Doctor wasn't concerned (she told me so!) but why do I feel so down? I haven't had any problems and the meds seems to work well!!! So, here we go. We continue on this path united by our common desire to survive this virus...Let God bless us all!!!
We are all dealing with this. And we will live long and productive lives!!

Offline leatherman

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Re: Got the news 3 days ago
« Reply #47 on: March 06, 2014, 01:07:51 AM »
I had a terrible cold
are you better now? I'm on day two of a cold. Ugh!! I feel like I've been run over by a truck. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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