Author Topic: Not so good lab results (Read 32619 times)

Cliff · « **on:** November 13, 2006, 06:04:44 pm »

I met with my HIV doc (Angela) today. She is a very thourough doctor (and straight-to-the point). My lab results haven't been great the past few months, but they were borderline enough to where I could delay starting treatment without too much protest from anyone. Not anymore. My viral load was 300,000 in Sept. and now it's 455,000. My tcells have remained constant at 300. She is recommending that I go back on meds.

They took more blood (resistance test, hypersensitivity tests and tcell counts) and I am due back after Christmas for a final meet before they put me on Sustiva/Truvada.

I knew this day would come, but I didn't think it would come this fast. Part of me is still thinking about taking a wait and see approach. I do feel fine. No weight loss. No fatigue. Only minor night sweats and swollen lymph nodes. But I probably don't need to risk getting sick.

Jody · « **Reply #1 on:** November 13, 2006, 06:10:29 pm »

Cliff...Whatever you should decide, when or whether to begin meds, I wish you the best of luck and good health, you deserve it as you are such a fine and decent man.

Jody

David_CA · « **Reply #2 on:** November 13, 2006, 06:11:06 pm »

Hey Cliff, I'm there with you, except it'll be starting treatment for the first time for me. I assume, from what you wrote, that you've taken a break from the drugs. My Dr. moved my appt from January to Dec 1 because of my last numbers. I am going to ask him to test for a number for the viral load, not just '>100,000'. Most likely, I'll start on Atripla. I'm nervous about it and a bit relieved, too. I'm healthy at this point and at the rate my T-cells are dropping, don't want to wait too much longer. Either option (wait or take 'em now) sucks! Take care.

David

RAB · « **Reply #3 on:** November 13, 2006, 06:26:09 pm »

Cliff

If I remember right, when you made the decision to discontinue meds you established some specific #'s you said you were absolutely going to use as a determination for restarting. Isn't that correct?

Your current #'s are below that.

You know what I'm going to say, so I won't even say it.

RAB

Jerry71 · « **Reply #4 on:** November 13, 2006, 06:33:56 pm »

Cliff sorry to hear about your numbers mine also went down but I'm not going to let it get me down going to think positive and push my numbers up next time. Just have to remember to take my meds on time. I'm back to my old meds again Combivir, Viread, and Lexiva.

newt · « **Reply #5 on:** November 13, 2006, 06:44:29 pm »

Hey Cliff, whatever you decide will be right for you.

Me, personally, I wish I'd chosen to start where you are not wait til 200 (200 like, er, the UK guidelines say). The Swiss cohort study (short version: better outcomes for people starting at CD4 350) convinces me further that CD4 of 350-300 is the right time to start with current treatment options.

But there's no denying it, starting combo is a defining moment, the door to the big house.

Good luck

- matt

Andy Velez · « **Reply #6 on:** November 13, 2006, 07:16:43 pm »

Sorry to hear about your disappointing results, Cliff. It sounds as if your doctor is keeping a good watch on things.

Going back on the meds is not a failure on your part or anyone else's. It's a choice with a view to staying healthy. It's true that the current results can stir a sense of vulnerability, especially when you feel that you've otherwise been doing the right things for yourself.

Overall you are still in good condition. Going back on the meds would be to insure that things stay that way or as is likely, get even better.

Wishing you well,

Eldon · « **Reply #7 on:** November 13, 2006, 07:53:30 pm »

Hey Cliff,

Sorry to hear the news about your Viral Load. Truly there comes a time for all of us to make "choices" in our lives. This is one of them. Whichever you "choose" will be the right move for you. In fact, the answer is within you.

I agree with Newt that I would not wait until you are at 200. The main issue here is to get your Viral Load under control and to put that wildfire out. If you do not put it out, then it will continue to multiply itself and spread.

I wish you the BEST for your health.

Make the BEST of each and every Day!

IzPoz · « **Reply #8 on:** November 13, 2006, 07:56:09 pm »

Cliff,

Having been in your shoes, I completely understand how you must be feeling: disappointed, frustrated, and angry that you will need to stick to a schedule again. When I had my 'holiday' from my meds, it was a two year holiday. It came at a time that was most difficult for me, and the holiday was nice while it lasted.

It's going to take some time getting used to a regime again, just keep some kind of reminder out for yourself until it becomes habit again. For me, since I do a lot in the kitchen, I keep my meds on the counter so I can see the bottles when I make myself breakfast or dinner for my daughter.

One day at a time, one breath at a time. And remember, this will help to get the viral load back to a more reasonable level, such as undetectable

Life · « **Reply #9 on:** November 13, 2006, 08:55:11 pm »

I hate these kind of decisions Cliff... I know you will make the right one that fits you... As Matt was saying... Remember what your committment was to yourself... Stay well, be well and we are here awaiting your results and final decision..

Love

allopathicholistic · « **Reply #10 on:** November 13, 2006, 09:25:00 pm »

Dear Cliff - I wish you strength , smooth sailing and lots of serendipity

Robert · « **Reply #11 on:** November 13, 2006, 09:43:44 pm »

Cliff.

It'll be 2 years next month. All things considered, that's not a bad holiday. Go back on for a year or so, and then take another holiday. As they say, don't worry, be happy.

robert

Lisa · « **Reply #12 on:** November 13, 2006, 09:44:27 pm »

Cliff,
I love you. I know you expected to be slapped in the face with this again sooner or later.
i am going to give you my real thought/opinion.
Start back on meds now, before you have to suffer the varied associated side effects of allowing the virus to have any advantage over you.
You are a beautiful spirited man, with a grin to die for.
Go for it. Keep what you got. Stay vibrant for your love of life.
But that's just me. I'd like to see ya preserve what ya got..........if ya catch my drift..........

I really miss the little kiss thingy we had at the original forums..

Queen Tokelove · « **Reply #13 on:** November 14, 2006, 02:49:55 am »

Quote from: newt on November 13, 2006, 06:44:29 pm

Hey Cliff, whatever you decide will be right for you.

Me, personally, I wish I'd chosen to start where you are not wait til 200 (200 like, er, the UK guidelines say). The Swiss cohort study (short version: better outcomes for people starting at CD4 350) convinces me further that CD4 of 350-300 is the right time to start with current treatment options.

But there's no denying it, starting combo is a defining moment, the door to the big house.

It's funny I should see your post. I have been dwelling on when to start meds. At first I said I would wait until I hit the 200 mark but I have been seeing and hearing a lot lately that it is considered too low. Then you go and post this. My cd4 is 372, it actually went up from 345. My viral load was 20000 but now it's 13865. I believe in karma or signs if you will and I feel that your post is a sign for me to start.

~~Cliff,

I agree with what someone said about it being right for you. I know it may be hard for you but know you are not alone. I know with me, it's about my pride, even though I knew this day would come. Let us know what you decide.

penguin · « **Reply #14 on:** November 14, 2006, 05:08:41 am »

never easy, things like this - whatever your decision, good luck.

kate

Beatz4me · « **Reply #15 on:** November 14, 2006, 11:13:49 am »

Very interesting re: when to start meds.

I do not want to wait until my CD4s hit 200 or below. My doctor was adamant with waiting until that point. Has anyone heard of any studies backing one option over the other ?

Listening to those who have been trhough it, leads me to believe..Do not wait !

Thanks to anyone who can help.

Moffie65 · « **Reply #16 on:** November 14, 2006, 11:14:43 am »

Cliff,

Well, like it or leave it, you are now getting a Moffie post.

Hell man, what are you thinking about? When your vl gets this high, and your CD4s are tenuous at best; there is every possiblity that your immune system could crash at any time. When your vl is this high, the only thing that your immune system is doing anyway is fighting the HIV at full tilt all the time, 24/7, and for you to idly sit there and wonder if maybe you should go back on meds is not terribly smart. You are a smart and very gifted man, and you now need to do some introspection and get yourself centered on taking care of the little immune response that you still have.

OK, I said my piece, the rest is up to you.

In Love,

Javicho · « **Reply #17 on:** November 14, 2006, 11:34:47 am »

I think it is good to be under medications, me personally I feel like everytime I took my medicine I have another extra day in my life, but that's me, you have to decide what is best for you, take care!!!

heartforyou · « **Reply #18 on:** November 14, 2006, 12:00:16 pm »

Hi Cliff,

Don't take too many risks. I would hate to see you get sick.

Thinking about you here

Hermie

Esquare · « **Reply #19 on:** November 14, 2006, 12:59:08 pm »

Quote from: Beatz4me on November 14, 2006, 11:13:49 am

Very interesting re: when to start meds.

I do not want to wait until my CD4s hit 200 or below. My doctor was adamant with waiting until that point. Has anyone heard of any studies backing one option over the other ?

Listening to those who have been trhough it, leads me to believe..Do not wait !

Thanks to anyone who can help.

I'm no expert on this by any means but I have read everything I can get my hands on. Based on what I've read in the Johns Hopkins book on Living with HIV I believe that if you can start above 200 cd4 cells then do it.

carousel · « **Reply #20 on:** November 14, 2006, 01:23:18 pm »

jack · « **Reply #21 on:** November 14, 2006, 01:42:33 pm »

cliff, time to stock back up on the Imodium and Zantac. After my three year drug vaca I went through several different regimens before I found one that not only worked for me but didnt make me sick. Its the first PI to work for me and first one that hasnt made me sick. Prezista,truvada,and norvir.
I was at the same place you are, ts were 300 and vl was a mil, I felt better than ever but decided to go back on to the grind.
I hope you find a regimen that works for you.

Cliff · « **Reply #22 on:** November 14, 2006, 04:01:54 pm »

Thanks all. Deep down, I know what's best. Just I started getting comfortable with not having to worry about taking meds. But all things come to an end. So I guess this will be my last Christmas without Viread gas.

Thanks again.

aztecan · « **Reply #23 on:** November 15, 2006, 12:26:30 am »

Cliff,

You know me. I believe in being aggressive in fighting this bug. So, nuff said.

I think you are making the right decision.

Besides, I still owe you a drink, so next time I see you, we'll toast our mutual investment in natural gas!

HUGS,

Mark

AlanBama · « **Reply #24 on:** November 15, 2006, 12:40:55 pm »

Cliff,

I just want you to take care of yourself. If that means going back on your meds...well then....

Believe me honey, you do NOT want to get sick, with a weakened immune system. Swallowing the little pills every day vs. being in the hospital on IV's is an easy choice.

Best of luck to you, my friend.

love,

Alan

Lis · « **Reply #25 on:** November 15, 2006, 03:06:50 pm »

What Alan said!!!

Get er done Cliff!!!!

Cliff · « **Reply #26 on:** November 15, 2006, 03:32:19 pm »

Update: I changed my appointment to Dec. 11th. I'm gonna try to start my meds during the holiday break. Thanks all. I feel much better now.

It's time and I'm ready.

Christine · « **Reply #27 on:** November 15, 2006, 05:11:10 pm »

Hi Cliff,
Sorry the numbers are not what you wanted to hear. I do agree with the others. It is easier to fight when you are stronger.

A little Viread gas makes the holiday season more....colorful! Who needs a nice pine smell when you have Viread!

Christine

RAB · « **Reply #28 on:** December 11, 2006, 09:40:48 am »

Cliff

I think this was a really good decision:

Quote

Update: I changed my appointment to Dec. 11th. I'm gonna try to start my meds during the holiday break. Thanks all. I feel much better now.

It's time and I'm ready

So I'm curious how things went today and what you and your doctor decided to use.

RAB

Lisa · « **Reply #29 on:** December 11, 2006, 09:45:47 am »

Me too....especially knowing that you just started a new job, and wondering if the stress did a number on your numbers.
Skype me when you get home from work.
I love you.

Cliff · « **Reply #30 on:** December 11, 2006, 03:53:18 pm »

Hey Rocky/Lisa:

My appointment went okay. My viral load is still 400k, and my tcell count is now 200 (but I have no resistance). We both agreed that I need to start meds now. Unfortunately, I have to go back for some more labs (she's still holding out that my tcells are just temporarily low and I may be able to wait until the Spring to start treatment).

As far as a combo, she doesn't want me to go back on Reyataz/Truvada, cause of my hypertension. During my last appointment she suggested Sustiva/Truvada, this time around she said the new UK guidelines say Lexiva/Truvada. I'll probably go with Sustiva cause Lexiva just seems like an old crappy drug repackaged with a new name (I think).

So things are moving forward (a bit slowly). My next appointment is on the 22nd, but given that I'm leaving for Texas on the 23rd, I may try to just walk in and see someone else to get the ball rolling faster.

On a more brighter note, I was sick this weekend (Cold). On my way to Boots, Saturday, to pick up some throat meds, I met a ballet dancer smoking in front of the English National Opera house. I'm off to meet him for drinks now....maybe I'll get my own private Nutcracker performance later!

heartforyou · « **Reply #31 on:** December 11, 2006, 04:38:29 pm »

Cliff,

now, talking about tiptoeing to your target.......fire it baby and crack those nuts...

Hermie

poet · « **Reply #32 on:** December 11, 2006, 05:11:23 pm »

Hey Cliff. I post date the logic behind why you stopped taking drugs, but posting as someone who waited for the line to be crossed, which, in my case, I think was about 250 cd4's (it's so long ago, I can't remember) before getting started and feel justified in my delaying things, I would say that if I were you, I would get back on the horse. I am on Sustive and Lexiva (replacement for Agenerase) as well as AZT and Norvir to bump things, and this strange relationship has worked for me for years now. Wishing you the best over the holidays! Win

Longislander · « **Reply #33 on:** December 11, 2006, 05:17:43 pm »

Quote

maybe I'll get my own private Nutcracker performance later!

Hi Cliff, I don't know too much about meds yet, so I'm just gonna say I hope you jump on both horses soon

.

RAB · « **Reply #34 on:** December 11, 2006, 05:35:43 pm »

Cliff

Thanks for the update buddy.

O.K. here's the thing that is confusing me. Your labs haven't been doing anything but declining for a year or so. Even after seeing an established trend, even with a high VL, even with an absolute count now at 200, you say your doctor wants to do just one more set of labs because:

Quote

(she's still holding out that my tcells are just temporarily low and I may be able to wait until the Spring to start treatment).

Why do I have a sense it isn't "she" but it's the "HE"?

Listen mister, I've still got my old Biojector and I'm not afraid to use it! So don't push your luck. Also I'll be sending you the bill for the co-pay on my Ativan because so help me you're driving me over the edge.

O.K. that's my rant, I know this is your decision so I'll shut up and won't say another thing about it, I promise. (

)

How'd the darn date go?

RAB

(Mumbles to self: damn stubborn, . . . .blankety blank blank!)

skeebo1969 · « **Reply #35 on:** December 11, 2006, 05:48:26 pm »

Cliff...

finger tapping
finger tapping...

What Rab said......

Robert · « **Reply #36 on:** December 11, 2006, 06:06:02 pm »

you know Clff, Rocky's right.

Just when isn't a trend a trend? I can tell you right now, you don't have any nuts, so you can forget the nutcracker. You open up that stocking, it's going to be full of coal.

robert

(who wishes you, of course, Christmas cheer!)

Razorbill · « **Reply #37 on:** December 11, 2006, 06:20:38 pm »

Cliff,
You're name suits you're situation well. It's where you're standing. You're tcell count could plunge in no time (and we ain't talkin' Spring). An OI will statistically impair you're long term survival. Grab whatever's available and take it now.
Razorbill
PS - Newer studies on TI's are not so rosy.

Lisa · « **Reply #38 on:** December 11, 2006, 06:54:15 pm »

OOOooooooooooo baby! I knew the new job would finish off your numbers. Definately do the walk in thingy!!
On the upside.....it's a lovely thought you have given me of a ballet dancer's taught body.

alisenjafi · « **Reply #39 on:** December 11, 2006, 07:08:56 pm »

How long were you off and do you think it was worth it?
My doc keeps stroking my ego by suggesting I go off as I haven't been detectable since I went on meds. No way, all I hear are horror stories and the long laborious road to get up to the 500 mark.
I fail to see the attraction, it is not like there is a 50/50 chance you aren't going to need the drugs.
We have an incurable disease. and 4 weeks off to spend months if not years to get back to the same levels. I am and have been between 600- 830 and have no plans of jeopardizing it.
Good luck but remember bouncing back ain't so easy from what I have been hearing.
Johnny

anniebc · « **Reply #40 on:** December 11, 2006, 07:13:00 pm »

I can't offer any more advise than the guys have already given you.

I just wanted to say make sure you treat the Ballet Boy gently you know how sensitive those Prima Donna's are...

...and for God sake don't upset Rab..you know we will never hear the last of it if you do...

Love and miss you

Jan

Cliff · « **Reply #41 on:** December 11, 2006, 07:27:24 pm »

Hey guys,

I'm sorry if I came off as caviler about it. Truth is, while I'm not too worried at the moment, I have accepted that my break is over and it's time to go back on meds. I think this break has been good for me. I was very neurotic about HIV meds and being in control of my treatment. It's been good to bring me down to reality. However, I'm not blowing this off.

I will be on meds before the year is out (if only to avoid a bitch session with Rocky). Trust me, I'm not in denial. I just gotta work through the system as well as work around my work commitments.

Cliff

BTW- I feel like George Costanza's mom on Seinfeld. The episode where she is thinking about getting a divorce, but consults with a Chinese lady. After deciding not to get a divorce because of the advice she has received, it was a great shock to find out that the lady she was actually getting advice from wasn't Chinese, but "some girl from long island." Well, the ballet dancer was actually a member of the orchestra (clarinet). So imagine my shock when we discuss it and he tels me he's not a dancer.

Cliff- What you're not a dancer?

Stuart- Nope.

Cliff- But I thought I was going to have sex with a dancer.

Stuart- Sorry.

Cliff- Well, then that changes everything!

Stuart- Why?

Cliff- You're not a dancer, I was duped!!!!!!!!!!!!!!!!!!!!

okay, so that's not how things went down. After all, he does play the clarinet for heaven's sake!

Eldon · « **Reply #42 on:** December 11, 2006, 08:10:46 pm »

Hey Cliff...

It is good to hear that you have made that decision to get back on meds. In the long run, it is going to help you with your situation.

The clarinet player? Sounds like precision is in order with this one. I hope that you enjoyed your evening with him.

Happy Holidays!

red_Dragon888 · « **Reply #43 on:** December 11, 2006, 08:20:28 pm »

I wish you the best in whatever decision you make.
Joe

fearless · « **Reply #44 on:** December 11, 2006, 10:20:00 pm »

cliff,

Does that mean he blew your trumpet then?

Have a good xmas matey, and get back on the pills asap or I'll come over there and give you a nutcracker you will never forget.

little Steve

Razorbill · « **Reply #45 on:** December 12, 2006, 06:37:19 am »

Hey,
Sorry I'm not impressed. "End of the year" lacks a ring of urgency. Someone else on these forums who means a lot to me went from "sinus thing" to PCP in a few days time. He too was waiting and waiting before starting meds. Ne remettez pas à demain ce que vous pouvez faire le jour même.
Razorbill

alisenjafi · « **Reply #46 on:** December 12, 2006, 08:48:07 am »

Quote from: Cliff on December 11, 2006, 07:27:24 pm

Hey guys,...
BTW- I feel like George Costanza's mom on Seinfeld. The episode where she is thinking about getting a divorce, but consults with a Chinese lady. After deciding not to get a divorce because of the advice she has received, it was a great shock to find out that the lady she was actually getting advice from wasn't Chinese, but "some girl from long island." Well, the ballet dancer was actually a member of the orchestra (clarinet). So imagine my shock when we discuss it and he tels me he's not a dancer.

Cliff- What you're not a dancer?

Stuart- Nope.

Cliff- But I thought I was going to have sex with a dancer.

Stuart- Sorry.

Cliff- Well, then that changes everything!

Stuart- Why?

Cliff- You're not a dancer, I was duped!!!!!!!!!!!!!!!!!!!!

okay, so that's not how things went down. After all, he does play the clarinet for heaven's sake!

Hey Stuart could have at least given you a lap dance- I would!
Johnny- always knowing how to put the right spin on things!

Cliff · « **Reply #47 on:** December 12, 2006, 09:49:48 am »

Quote from: Razorbill on December 12, 2006, 06:37:19 am

Hey,
Sorry I'm not impressed. "End of the year" lacks a ring of urgency. Someone else on these forums who means a lot to me went from "sinus thing" to PCP in a few days time. He too was waiting and waiting before starting meds. Ne remettez pas à demain ce que vous pouvez faire le jour même.
Razorbill

Point taken Ernie. I'm gonna take Wednesday afternoon off and will go to the clinic and meet with the on-call doctor to try and get on meds.

RapidRod · « **Reply #48 on:** December 12, 2006, 10:06:46 am »

Clifford, take your medicine or you won't be able to go out and play.

Cliff, hope everthing works out well for you.

Rodney

MSPspud · « **Reply #49 on:** December 12, 2006, 10:13:14 am »

Cliff - You're certainly taking a walk on the wildside to take a break for so long, but I'm sure you'll be fine. Best of luck over the holidays while you commence therapy!

RAB · « **Reply #50 on:** December 15, 2006, 07:21:08 pm »

Quote from: Cliff on December 12, 2006, 09:49:48 am

Point taken Ernie. I'm gonna take Wednesday afternoon off and will go to the clinic and meet with the on-call doctor to try and get on meds.

Cliff

Any updates?

RAB

Eldon · « **Reply #51 on:** December 15, 2006, 08:53:28 pm »

Hey Cliff...

Put that wildfire out. Any changes since your last appointment?

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Cliff · « **Reply #52 on:** December 16, 2006, 04:28:24 am »

No updates. I waited at the clinic for 3 hours, and never got to see a doctor. The notion of an on-call doctor is a bit of a joke, the doctors had appointments all day and refused to see anyone in between appointments. A nice nurse was kind enough to get me an appointment for Monday.

I think I'm gonna switch to the big HIV clinic in London (Koebler).

David_CA · « **Reply #53 on:** December 16, 2006, 10:00:17 am »

Quote from: Razorbill on December 12, 2006, 06:37:19 am

Hey,
Sorry I'm not impressed. "End of the year" lacks a ring of urgency. Someone else on these forums who means a lot to me went from "sinus thing" to PCP in a few days time. He too was waiting and waiting before starting meds. Ne remettez pas à demain ce que vous pouvez faire le jour même.
Razorbill

Yep, I sure did, and spent 8 days in the hospital. It surprised the hell out of me. My CD-4's were a bit higher than yours, too. There was not much of a trend with my numbers - just fluctuations that didn't seem to be of any real concern. I was planning on starting meds in early-mid December, but started Dec 1 when I was in the hospital. I'm on Atripla and really have no side effects to complain about. Good luck and be proactive when it comes to this shit.

David

allopathicholistic · « **Reply #54 on:** December 17, 2006, 06:27:47 pm »

Quote from: Cliff on December 16, 2006, 04:28:24 am

No updates. I waited at the clinic for 3 hours, and never got to see a doctor. The notion of an on-call doctor is a bit of a joke, the doctors had appointments all day and refused to see anyone in between appointments. A nice nurse was kind enough to get me an appointment for Monday.

I think I'm gonna switch to the big HIV clinic in London (Koebler).

Hey - Good luck if you do that. Bigger's sometimes better anyway!

Eldon · « **Reply #55 on:** December 17, 2006, 06:32:20 pm »

Hey Cliff...

Let us know how it goes tomorrow. Best wishes!

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Cliff · « **Reply #56 on:** December 18, 2006, 12:22:38 pm »

Met with the consultant today and he thinks I've gone and got myself superinfected. They charted my results and things took a dive sometime between July and Sept. My liver functions are also extremely high, (10 times the normal level), something my last consultant forgot to mention. But no STDs and no Hep. C (I'm immune to A/B), that could explain the liver results or the increase in viral replication (a jump from 10-20k to 300-400k). The only logical conclusion is that either my immune system simply gave up this summer, or I've acquired a new HIV strain and it overloaded my immune system.

They are going to genetically test some of my stored blood samples and compare it to the genetic profile of the virus I have right now.

updated numbers.....355,000 viral load, 110 tcell count.

He doesn't want me to start meds until after I return to the UK (makes a valid point that if things go haywire, I'm not going to be in a position to see anyone about it). The risk of me getting PCP within the next couple of weeks is low.

He gave me a one-month supply of Sustiva/Truvada to take with me. He and I are gonna speak again on Friday (to review my latest tcell count). I will make a decision then whether or not to start taking the meds or just store them until I get back. The HIV genetic stuff will come back sometime in January.

$:-\$

I can be such a fucking idiot sometimes.

joemutt · « **Reply #57 on:** December 18, 2006, 12:33:09 pm »

Cliff I hope everything works out great with your upcoming trip
and the gen tests.

RAB · « **Reply #58 on:** December 18, 2006, 03:16:11 pm »

Well Crap!

That's got to have been disturbing to hear! (the superinfection possibility)

Hopefully they'll be able to get to the bottom of what's going on and you can get all this sorted out.

Are you taking prophylactic for PCP? I hope.

RAB

manchesteruk · « **Reply #59 on:** December 18, 2006, 03:47:34 pm »

Sorry to hear the latest news Cliff you would have been unbelievably unlucky to have suffered from a super infection I thought the only reported cases of this were soon after the initial infection? Fingers crossed for you though matey.

Chris

allopathicholistic · « **Reply #60 on:** December 18, 2006, 04:12:41 pm »

Hear hear. Hope the 'superinfection' thing is a huge error. Thinking of you

David_CA · « **Reply #61 on:** December 18, 2006, 04:33:29 pm »

Quote from: Cliff on December 18, 2006, 12:22:38 pm

He doesn't want me to start meds until after I return to the UK (makes a valid point that if things go haywire, I'm not going to be in a position to see anyone about it). The risk of me getting PCP within the next couple of weeks is low.

Cliff,
Even though my CD4's are a lot higher than yours, I still got PCP. My Dr. is keeping me on one Bactrim per day until they rise significantly so it won't happen again and started me on Atripla the 2nd day I was in the hospital. I'm sure your Drs. know better than I do, but, like Rocky mentioned, I might request something to prevent it. Good luck with it all and keep us informed. Take care.

David

Cliff · « **Reply #62 on:** December 18, 2006, 06:22:57 pm »

I asked about PCP. He says they usually don't see folks get PCP until their tcell % drops to 10% or below. My % is 17, so he doesn't think PCP is a major concern. I am taking Doxycycline, (purchased on the internet), to stop in-grown hair infections. I wonder if this will offer protection from PCP?

I feel fine. No symptoms, so I wonder if they think this is something to ride out (e.g., my tcell counts will increase to normal range after things stablize, much like a new infection). I didn't ask that, but I will on Friday.

jack · « **Reply #63 on:** December 18, 2006, 06:32:16 pm »

mine jumped from 75000 to 1 million in a six week period after a long drug stop. After 4 years of trying to find a regimen that works I have been undetectable for several months and for the first time in 16 years have no sides. Drugs work.

Razorbill · « **Reply #64 on:** December 18, 2006, 06:42:05 pm »

Tcells nose dive quickly. Instead of all this talk of super infection, could it just be the virus is winning it's battle in your body? Period. I'm just not getting why so many people involved in your care are so circumspect about your taking drugs. Could it be they're taking your lead? Take the pills, take something. I don't believe Doxycycline is the treatment for PCP, and Bactrim is the preventive. You're making my head spin!

Eldon · « **Reply #65 on:** December 18, 2006, 08:48:26 pm »

Hey Cliff...

I do not want to be the one to raise your inner anxiety level about this. However, with the risk of a superinfection, a lowered CD4 count, and a wildfire of a viral load. You may want to reconsider taking the Sustiva/Truvada combo that you Doctor gave you in order to initiate operation suppression.

Either way have a safe trip and Yes, you are in my thoughts and my prayers and I am sending you some positive energy your way as well.

Take care of YOU!

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Cliff · « **Reply #66 on:** December 19, 2006, 02:28:06 pm »

Quote from: Razorbill on December 18, 2006, 06:42:05 pm

Tcells nose dive quickly. Instead of all this talk of super infection, could it just be the virus is winning it's battle in your body? Period. I'm just not getting why so many people involved in your care are so circumspect about your taking drugs. Could it be they're taking your lead? Take the pills, take something. I don't believe Doxycycline is the treatment for PCP, and Bactrim is the preventive. You're making my head spin!

Well, I kinda am taking the lead I suppose. I did ask for and get meds, but I just decided that the doctor made some reasonable points that I really hadn't considered. I can start the meds right now if I choose to...the doctor just wants me to hear him out before I make any decisions.

After thinking it over last night, I really struggle to see how I could have contracted another strain, but there is a possibility so who knows. Much of this discussion is a bit academic cause it still doesn't change the fact that my tcells are in the treatment range. Perhaps they think things will rebound and would rather I wait to know for sure that this isn't a temporary thing, before I jump back on meds. Also, the UK has a less aggresive approach to HIV care than the US, so that probably has something to do with it as well.

newt · « **Reply #67 on:** December 19, 2006, 05:02:32 pm »

Cliff,

Your clinical picture is also consistent with having had a second strain from the start which has now come to the fore.

Julia Marcus' reseach (some on Medscape, I can find it if you want) has documented rapid decline in immune function on appearance of a second but genetically distinct virus in a small number of people within a few years of seroconversion. She showed half of this number were definitly not superinfections, ie the second strain was present from the start and had replaced the original one. She modelled this to polulation level and concluded it applied to between 1.5% to 3.0% of HIV+ people. This is consistent with the understanding on the proportion of people who need to start treatment within 1-4 years after seroconversion. (Now you's gonna go say you've been +ve more than 4 yrs so it must be superinfection....).

I am interested to see if the genetics supports a possible explanation of second infection. In any case it's by the by. If your CD4s stay low you need treatment. This extra info is all a bit of a red herring anyhow, I seem to remember you were thinking it was time to restart treatment anyway, which is why you was down the clinic in the first place.

- matt

PS: doxy can bugger your liver enzymes

David_CA · « **Reply #68 on:** December 19, 2006, 05:34:21 pm »

Quote from: Razorbill on December 18, 2006, 06:42:05 pm

. I don't believe Doxycycline is the treatment for PCP, and Bactrim is the preventive.

I took Septra for PCP and now Bactrim for the preventative 'til my t-cell numbers increase.

David

gerry · « **Reply #69 on:** December 19, 2006, 09:12:40 pm »

Cliff:

Did you doc by chance check an HCV PCR to make sure you are not dealing with acute hepatitis C infection in which sometimes, there is a significant delay in seroconversion (i.e., antibody-negative window)? Do they have any other explanation for the liver enzyme abnormalities or other tests in mind? Also, are they going to check another genotype if they suspect the possibility of superinfection? Just a few more questions to add to your list. Good luck and keep us posted.

Gerry

Cliff · « **Reply #70 on:** December 20, 2006, 03:50:58 am »

I now prefer the term reinfection. ~~Superinfection~~ sounds too CNN Breaking Newish.

Matt- I'm in the 1-4 year window, can you send through that paper. I can email it to the consultant. Gerry- I don't think he did a HCV PCR. I think he just did another antibody test. But it has been a few months since the last HCV antibody test (which was near the first viral load spike), so if it is HCV then I suppose it would probably show up on the antibody test by now. But now you are scarying me!!! I think I would much rather have a reinfection than HCV.

He came up with only two explanations for the liver enzyme results....1) they are correlected with my viral load so now that my viral load has increased so will my liver enzymes, or 2) I have heptatits, but he almost conclusively ruled that out since I last tested negative and I haven't really been at high risk for it. Even though it can be sexually transmitted, it's mostly seen with traumatic gay sex...er fisting (it was kinda funny seeing him stumble to say that word).

Yes, (if I understand your genotype question correctly), they are going to check another test. They store all of our blood samples. So they are going to pull one of my old ones (say January of this year)/pre spike and do a genotype on it. They will then do a genotype on the viral load he ordered this week and compare the two.

Cliff

Dachshund · « **Reply #71 on:** December 20, 2006, 08:08:32 am »

Good luck to you Cliff...what would we do without Matt?

newt · « **Reply #72 on:** December 20, 2006, 09:33:16 am »

I will sort out some stuff.

One for starters is this poster (PDF and a bugger too cos it's big and landscape) from the 2005 Retrovirus Conference:

Higher Frequency of Apparent HIV-1 Superinfection -- Sequentially Expressed Dual Infection (SEDI) -- in Recent Infection Compared to Chronic (PDF poster)
Robert M Grant, J Jeff McConnell, Julia L Marcus, Christophe Kreis, Gerald Spotts, Teri Liegler, Rosaleen Brennan, and Frederick M Hecht, Gladstone Institute of Virology and Immunology/University of California, San Francisco

Pay special attention to "Leon", where a second virus appeared shortly before a collapse in CD4s.

- matt

===

"One case described here would have met criteria that other groups use for "superinfection" in that a virus population at baseline was replaced by a second highly divergent viral variant. However, analysis of the screening sample indicated that the subsequent virus was present at baseline. This case demonstrates how the dynamics of dual infection can lead to the appearance of superinfection."

[attachment deleted by admin]

newt · « **Reply #73 on:** December 20, 2006, 09:53:36 am »

Cliff,

Doc could be right re: HIV viral load/liver but...from the British HIV Association guidelines on hep C coinfection:

1.1 Assessment of all HIV+ patients

1. Screen all HIV-positive patients for HCV infection, at first HIV diagnosis and subsequently according to risk, by antibody test and confirm viraemia with HCV PCR.

2. Perform PCR test even if HCV-antibody negative in patients with unexplained liver disease

PCR please, the seroconversion period can be long. You are right that typically sexual transmission requires trauma but better to check eh? Also, the duration of hep A and B immunity following vaccination/infection is presumtive (a guess) rather than well-known, and in the absence of hep C antibodies a check on these is in order. (HIV-positive people who are successfully vaccinated against hep A and B are recommended to get their level of immunity checked annually).

- matt

Lisa · « **Reply #74 on:** December 20, 2006, 11:38:35 am »

OK Little brother!
Our beloved Newt makes excellent points, and whatever decisions you make about your HIV meds is certainly not an emergency.
I do however, have a couple of bones to pick with you. The first bone concerns the Doxy. (especially internet purchased Doxy) and the effects it may be having on your liver fnx. Which leaves me to wonder if you had presence of mind to tell doc you were taking it as prophylaxis for hair bumps. Although I do still vividly remember helping my ex get those damn little things picked out of the bumps on his face. I understand your dilemma, but not at the expense of your young liver.

The second bone is out of concern for your increased need for PCP prophylaxis for your trip home for Xmas. You're going to be passing through airport terminals, close quarters on airplanes for extended periods, then eventually getting home and kissing all of your family which will include neices, nephews, babies (possibly), and we know what little harbingers of disease kids can be. I would feel better for you if you at least had some Bactrim to travel with....especially given your CD4 count.

Rant over........I love you.

newt · « **Reply #75 on:** December 20, 2006, 12:08:16 pm »

Two

This is a good good write-up, not by Dr Marcus though, of a study on re-infection with extensive references:

Human Immunodeficiency Virus Type 1 Superinfection Was Not Detected following 215 Years of Injection Drug User Exposure
Rose Tsui, Belinda L. Herring, Jason D. Barbour, Robert M. Grant, Peter Bacchetti, Alex Kral, Brian R. Edlin and Eric L. Delwart
Blood Systems Research Institute, and Department of Medicine, Center for Bioinformatics and Molecular Biostatistics, Urban Health Study, University of California, San Francisco, Gladstone Institute of Virology and Immunology, San Francisco, California, Center for the Study of Hepatitis C, Weill Medical College of Cornell University, New York, New York

The abstract + discussion and conclusion has the meat and drink of what the study found/said, the science bit in the middle is kinda dense. Although its with IV drug users, their risk factors for reinfection includes sex.

- matt

Cliff · « **Reply #76 on:** December 20, 2006, 05:52:12 pm »

Thanks Matt!! I'm gonna get through the links tonight and tomorrow and fire off an email to him on Friday (hopefully he'll get it before our phone conversation). I will ask about the pcr or maybe try to get to the clinic again to see if they will test me for it.

Cliff · « **Reply #77 on:** December 21, 2006, 06:51:06 am »

Good news!!

I just called the nurse and my tcell counts are back. It is 320 and 21.4%. The viral load and Hep. C stuff aren't back yet. I don't know if the quick rebound supports the idea of some sort of reinfection.

I've decided not to start meds.

Cliff

RAB · « **Reply #78 on:** December 21, 2006, 10:53:09 am »

Cliff

Good news about the upswing in your most recent labs. But it doesn't change anything, other than the need for PCP prophylaxis, in my opinion.

Either way though the decision to start meds is a personal one, and despite some of your posturing that the Europeans have a more conservative approach as to when to start meds, despite your suggestion that the decision to continue to hold off was being driven by the "system", it really was always about whether you are ready.

Have a Merry Christmas and enjoy your family visit.

One pesky little detail that started this thread though:

Quote from: Cliff on November 13, 2006, 06:04:44 pm

I met with my HIV doc (Angela) today. She is a very thourough doctor (and straight-to-the point). My lab results haven't been great the past few months, but they were borderline enough to where I could delay starting treatment without too much protest from anyone. Not anymore. My viral load was 300,000 in Sept. and now it's 455,000. My tcells have remained constant at 300. She is recommending that I go back on meds.

I knew this day would come, but I didn't think it would come this fast. Part of me is still thinking about taking a wait and see approach. I do feel fine. No weight loss. No fatigue. Only minor night sweats and swollen lymph nodes. But I probably don't need to risk getting sick.

RAB

alisenjafi · « **Reply #79 on:** December 21, 2006, 11:07:39 am »

Quote from: Cliff on December 21, 2006, 06:51:06 am

Good news!!

I've decided not to start meds.

Cliff

Out of curiosity and not meaning to sound like an attack but what are you using as a justification not to go back. How long are you reckoning it will take to get your t cells and v load back to before the holiday?
What was your key factor in taking the holiday?
I am wondering why people choose this as I don't see many good results from a holiday. My doc wants me to do one and I refuse. I never had an oi to begin with. My nadir before meds was 327 before going on , and once on was pretty steady in 700- 800 range dipping only once to 446 when I had a sinus infection , when taking my blood work and have been undetectable since 6/03.

While this is a personal decision, in the end I know it's not like they are going to tell me one day "Okay you're completely weaned from Sustiva" And 3 years on I still have the spacey trippy side feeling of the drug. Hearing horror stories in NY of people taking years to rebound for 2-3 months and the complications I even wonder why the docs let it go on for so long. You keep stating issues yet (I am probably missing something) seem not to take the inevitable step of going back.

Just curious-
Johnny

newt · « **Reply #80 on:** December 21, 2006, 11:33:53 am »

I am gonna put money on this settling out as a temporary viremia of unknown cause. On the genetics, I will accept a heteroduplex analysis that shows divergence of >5% between virus types as evidence of a possible acquired second infection but not a standard genotype, it just ain't precise enough. Liver/viral load correlation is speculation. Maybe you was just stressed, taxing your liver with doxy (+maybe a martini/similar or two), got your bloods drawn at a bad time of day, had a bit of a cold, got the lab staff on a slightly careless afternoon etc etc etc. I hope I am right

Have a good trip to Texas n eat me a big 16oz chargrilled steak

- matt

Ann · « **Reply #81 on:** December 21, 2006, 11:40:08 am »

Quote from: newt on December 21, 2006, 11:33:53 am

I am gonna put money on this settling out as a temporary viremia of unknown cause. On the genetics, I will accept a heteroduplex analysis that shows divergence of >5% between virus types as evidence of a possible acquired second infection but not a standard genotype, it just ain't precise enough. Liver/viral load correlation is speculation. Maybe you was just stressed, taxing your liver with doxy (+maybe a martini/similar or two), got your bloods drawn at a bad time of day, had a bit of a cold, got the lab staff on a slightly careless afternoon etc etc etc. I hope I am right Have a good trip to Texas n eat me a big 16oz chargrilled steak

- matt

And let's not forget, Cliff, that you've been under tremendous stress lately, what with leaving your old job, interviewing for a new one, all that crap about your status when you were first hired and now being the new kid on the block. All that combined with what Matt mentions is bound to take a toll - and it looks like a temporary one.

Treat yourself well in the coming weeks - eat right and make sure you're getting plenty of rest and relaxation in and hopefully your upward trend will continue. Good luck!

Ann

Robert · « **Reply #82 on:** December 21, 2006, 02:30:09 pm »

Cliff!@!!

I just caught up with all this today. What's going on? I'm inclined to agree maybe it was just a matter of all the planets lining up the wrong way, sun spots, intrusions from outside the realm and all that but please, be careful during the holidays. I like the idea of eating good and getting lots of rest and away from the ordeals of work. But be careful. Holidays are also stressful. I know you're going to see Will and I hope things go OK. More than OK. I hope they're fantastic. But regardless, please try not to stress out.

And by the way. Ok. YOu've made your point and you've reached your goal: 2 years on a holiday. When you come back, time to start your meds, mister. Don't even give "reinfection" a chance.

robert

robert

Cliff · « **Reply #83 on:** December 21, 2006, 09:00:11 pm »

Gonna play it by ear. I'll try to get labs done every month when I get back (at least until my numbers stabilize again). As long as my tcells are in the 300's, don't think I'm gonna start back yet (I want 3 years now Robert). It really does feel nice not being on meds. Maybe Rocky is right and the stress/drama is more about not taking the meds. But at least now I have them in my possession now (sitting in my underwear/sock drawer), so whenever I want to start I just start.

Eldon · « **Reply #84 on:** December 21, 2006, 09:22:01 pm »

Supporting You

Hi Cliff...

However it works out, I just wish you the BEST with your situation. Take care of YOU!

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Cliff · « **Reply #85 on:** January 08, 2007, 07:07:48 pm »

I got my latest number. Tcell wa s290 and $ was 20. About the same from the bnast report; I'm gonna just stick with ths plans. Meeting with docutor to discuss resinfecition is in a couple weeks. I wanna know if they'ved complkete the genetic tests.

koi1 · « **Reply #86 on:** January 08, 2007, 08:01:42 pm »

Hey Cliff,

I know you have been living with HIV for a while, so I"ll keep it short. Through denial I managed to avoid getting tested, even after having very bad digestive problems. By the time I decided to bite the bullet, my t cells were down to 97 and I got pcp. The pcp was controlled just fine. But, I have done perhaps ireparable harm to my digestive system by not being tested and having started meds earlier. Take care of that digestive tract. Don't let this virus get a hold of it, because it takes its toll.

rob

Robert · « **Reply #87 on:** January 09, 2007, 12:36:45 am »

Cliff

From the typing/spelling alone..........

Quote

I got my latest number. Tcell wa s290 and $ was 20. About the same from the bnast report; I'm gonna just stick with ths plans. Meeting with docutor to discuss resinfecition is in a couple weeks. I wanna know if they'ved complkete the genetic tests.

....................... I'd say it's already too late.

robert

Cliff · « **Reply #88 on:** January 09, 2007, 06:47:43 am »

Sorry. Wrote that after a night of drinking and eating.

skeebo1969 · « **Reply #89 on:** January 09, 2007, 07:17:09 am »

I knew it!! When I saw it I figured you were drinking..lol. I hope you are not making your decisions while drunk Cliff.. You are well aware of how close you are cutting it here so I won't even start... I hope you have at least made your doc appointments more frequent so you can monitor this closely.

Be careful.

Thomas

alisenjafi · « **Reply #90 on:** January 09, 2007, 07:33:22 am »

In keeping with the theme- should AIDSMEDS have a boot to use to kick those in the arse for making decisions that they know were completely foolish-
Cliff I get the feeling you are playing this like a poker game- so
http://www.youtube.com/watch?v=XxTmOOvigJY&mode=related&search=

newt · « **Reply #91 on:** January 09, 2007, 11:23:29 am »

I dissent

There's time to make a considered decision on when to start, if indeed that ends up being the outcome here. What with a new job, emotional stuff around the reinfection(?) thingy (or not), and reconciling the loss/lessening of them Dirty Martini nights to accommodate Sustiva, few hands of poker may not be a bad idea. Never lost a game of poker when the other player had all his cards on the table.

There ain't any point starting if you ain't really ready, treatment needs to fit your life to save it, and counts here are good enough to afford time for consideration.

- matt

Now playing: the air conditioning

Cliff · « **Reply #92 on:** February 10, 2007, 04:54:46 pm »

I had another appointment with the doctor. My tcells are 290 and viral load is 11,000. He was throwing around superinfection again. But the genetic tests weren't back yet (not sure how long it takes) so he couldn't say for certain. Part of me wanted to tell him to stop saying superinfection unless he had proof of it (I still can't recall being at specific risk for it during that period), but I chickened out. Anyways, he recommended not starting treatment but that I could do so if I wanted to. He didn't see a need for me to start back now because the risk of OI was low. I've decided to hold off and see how things are in April.

Razorbill · « **Reply #93 on:** February 10, 2007, 04:58:30 pm »

Not smart. And you know it.

hussy_24 · « **Reply #94 on:** February 10, 2007, 05:35:02 pm »

this thread kinda scares me away from having sex again

then again i had lots of sex between infection and diagnosis and my numbers are on the low end anyway so probably reinfected before knowing i had hiv then again might not be reinfected at all just thinking i am because i am reading it on the net, then again again

always get bloods taken when i am feeling "off" with a cold or whatever which never helps i am sure.

Hope things go well for you Cliff. April seems a long way away though

. Look after yourself in any event, wrap up warm, i've been wearing a wooly hat to bed this week because of the snow!!

RAB · « **Reply #95 on:** February 10, 2007, 08:49:24 pm »

Hi Cliff:

These most recent labs are a remarkable improvement over where you were just a couple of months ago.
I'm remembering a cd4 count of somewhere just over 100 and a vl at one point that was like 1/2 million.

So to hear that your most recent counts are 290 and 11,000 is good news obviously. (Very interesting how the roller coaster of results has played out--makes one wonder what exactly is contributing to them).

I think you know where I stand on the decision of restarting. That's the funny thing about the question you are currently wrestling with, there is no concrete, cut and dried, absolutely positively (sic) road map for anyone to follow.

I do agree with something that Matt said, unless you are personally ready then it isn't a good idea to restart.

You've made a really smart decision to monitor your labs monthly until a clearer picture emerges, for that you get loads of brownie points.

Good luck and keep up the fight my friend.

RAB

Robert · « **Reply #96 on:** February 11, 2007, 12:35:52 am »

I know I'm not convinced of any so-called "superinfection". I think it's just your numbers going up and down, perhaps influnced by some external behaviors (like sex) and once they find a nice plauteu they settle down. They're in no hurry and so it's a good thing you're not either.

robert

Forums Index

Welcome

Author Topic: Not so good lab results (Read 32619 times)