Author Topic: Newly diagnosed and no sense of urgency from dr. (Read 47248 times)

Irish Eyes · « **Reply #50 on:** March 19, 2014, 01:42:35 am »

I feel perfectly fine ('Normal') as you put it.
My days are long, 12-18hrs., full and varied, and typically 7 days a week.
In addition I've international travel scheduled and shall start upon return.
The side effects are of little to no concern to me, just timing…..

Ann · « **Reply #51 on:** March 19, 2014, 08:25:46 am »

Try to not stress about that last VL result. You're still in the first few months of infection and it's not uncommon for a person at this stage of infection to have really high VLs, and as your doctor indicated, VL counts in an untreated patient will fluctuate. Yes, sometimes even that much.

Most people aren't diagnosed so early on in their infection, so they're blissfully unaware of how high their VL is and how much it may (or may not) be fluctuating.

You'll be starting meds shortly and typically, even very high VLs go down quickly when it's a brand-spanking new infection like yours. Relax, ok?

pittman · « **Reply #52 on:** March 20, 2014, 12:50:14 am »

Hi Irish Eyes,

Sorry, was traveling this week for work and did not check the forums, but I see others provided words of wisdom.

As Ann said, viral load tends to be high in earlier stages of infection. That is not unusuall.

Soooo.... have started taking your meds yet? I started on a Friday so I had a week-end to adjust. Did not turn out to have much impact on how I felt! other than some drowsyness the first couple evenings I took it. (I am on Atripla.)

After I started! it was less stressful to me! and it felt good when I started seeing my VL drop rapidly and my CD4 count go up.

Let us know how your are doing.

P.S.- wonderful that you plan to stop smoking. I urge you to get some help with that! cause I hear that is tough.

kevinazus · « **Reply #53 on:** March 28, 2014, 05:25:04 pm »

Hey Irish, how are you doing? Have you started taking meds yet? If so, was just wondering how that is going?

Kevin

Irish Eyes · « **Reply #54 on:** March 29, 2014, 01:33:37 pm »

Started Stribild last Friday 21st. (7 doses ago)
Take @ midnight and absolulty no side fx though do enjoy
my midnight feast.
Weight holding out at 145lb.
Gain of approx 10lb. since Christmas, 10 more to go to back to my normal.

xinyuan · « **Reply #55 on:** March 29, 2014, 09:44:02 pm »

Strange. Tried to PM you, but couldn't.

Anyways, happy to see you started. Hoping for you to continue having no side effects. Hoping you feel better on treatment, too.

Congrats on the weight gain.

kevinazus · « **Reply #56 on:** March 30, 2014, 12:43:01 am »

Hey Irish, glad to hear you started and that you're doing well. I'm on day 19 with Stribild and no side effects. Have also gained 10 pounds since I was sick in January with five more to go to be back to normal.

Irish Eyes · « **Reply #57 on:** April 16, 2014, 08:30:56 pm »

**Update***

After 24 doses of Stribild VL reduced from 530873 to 104.
No side effects at all.

AusShep · « **Reply #58 on:** April 16, 2014, 08:40:13 pm »

Quote from: Irish Eyes on April 16, 2014, 08:30:56 pm

**Update***

After 24 doses of Stribild VL reduced from 530873 to 104.
No side effects at all.

That's awesome progress in less than a month.

Irish Eyes · « **Reply #59 on:** April 16, 2014, 08:48:59 pm »

Quote from: AusShep
That's awesome progress in less than a month.
[/quote

Good Irish stock.

zach · « **Reply #60 on:** April 16, 2014, 09:22:29 pm »

man that is epic. you need to go howl at the moon, beat your chest, and ROAR

absopozilutely · « **Reply #61 on:** April 16, 2014, 10:54:08 pm »

Congrats!

Irish Eyes · « **Reply #62 on:** April 16, 2014, 11:55:02 pm »

Quote from: zach on April 16, 2014, 09:22:29 pm

man that is epic. you need to go howl at the moon, beat your chest, and ROAR

With reference to 'good Irish stock', we're going to dinner now and I'm NOT the designated driver.
Party is on !!!!

zach · « **Reply #63 on:** April 17, 2014, 12:20:43 am »

you're on, fado's pub when you're in atlanta, pints to the bottom on me

drive?! i can't even walk right now

Irish Eyes · « **Reply #64 on:** April 17, 2014, 02:13:31 am »

I'm in Palm Springs and at Cochella Half Time festival.

pittman · « **Reply #65 on:** April 17, 2014, 06:26:58 pm »

Great to hear the progress. By your next test, sounds like you'll be undetectable. (at 104, that would have already been undetectable not so long ago before they improved the tests!)

Irish Eyes · « **Reply #66 on:** May 12, 2014, 05:03:50 pm »

**Update**
Blood draw on Friday, VL result today Monday. (52 doses later)
Went from 104 to 129. Yeah !
Deduced reason for increase was yogurt.

I came up with plan to wash med down with 2 yogurts as opposed to figuring out something more substantial to eat at midnight.

We read about antacids etc. affectin absorption,
Who'd a thunk yogurt? Duh! Calcium you idiot!

I'm not concerned with new number.

fgh12 · « **Reply #67 on:** May 12, 2014, 06:32:39 pm »

Hey Irish eyes,

so far so good? No side effects or anything? I started Stribild 6 days ago....

leatherman · « **Reply #68 on:** May 12, 2014, 06:33:03 pm »

Quote from: Irish Eyes on May 12, 2014, 05:03:50 pm

Went from 104 to 129

yogurt IS good for you.

I do hope you realize that a 25 pt viral increase is statistically a zero change, right?

Your doctor probably should have explained that sometimes successful med treatment will result in a dramatic drop of VL at the first, with the final result of UD often taking a few weeks/months longer to purge the last free-floating virus.

(we should never forget that UD does NOT mean Zero. HIV hides in reservoirs and over time will periodically "spill" HIV out into our bloodstream. We do not however have increasing VLs because our meds work as PrEP and PEP against these small amounts of HIV.)

HIV-related testing numbers, viral load and cd4 count, have to always be considered as part of a trend based on at least 3 results over several weeks (or months) worth of time. Obsessing about tiny changes is just silly as our bodies are in flux all day long. Testing at different times of the even same day would yield varying results. (ah! those evil reservoirs and our immune systems at work all the time LOL)

fgh12 · « **Reply #69 on:** May 12, 2014, 06:38:20 pm »

ps
Can anyone give me ideas what you are taking with the stribild? I'm taking it at dinner time but as I work irregular hours, dinner hours can vary. I was considering a protein shake with 2 scoops of protein on the days that I can't have dinner.

Also, do you feel different when taking it with less calories? Gilead sciences recommends taking it with 300 and something kcal, but I'm wondering....

Irish Eyes · « **Reply #70 on:** May 12, 2014, 08:09:53 pm »

Quote from: fgh12 on May 12, 2014, 06:38:20 pm

ps
Can anyone give me ideas what you are taking with the stribild? I'm taking it at dinner time but as I work irregular hours, dinner hours can vary. I was considering a protein shake with 2 scoops of protein on the days that I can't have dinner.

Also, do you feel different when taking it with less calories? Gilead sciences recommends taking it with 300 and something kcal, but I'm wondering....

I also work irregular hours, usually about 18-20 a day 7 days a week (for 20 years).
As for meal times, breakfast could be anywhere between 5am and 3pm, lunch between 3 - 9pm and dinner whenever. If I have lunch I dont have dinner and visa versa.
I take my med @ midnight and at first I was forcing myself to eat at least a sandwich (which got boring), then changed to smoothie with added 'mass' powder (to regain weight), that got old with the noise & cleanup, then stockpiled Milky Ways and Twix but my brothers would eat them (little bas*****) and finally decided on coffee yogurt (nobody else eats yogurt here).
Quick, easy and always available.

Though many times if i had a meal around 8pm that would do me and consume nothing else and still take med on schedule 3-4 hrs later.

Quote from: fgh12 on May 12, 2014, 06:32:39 pm

so far so good? No side effects or anything? I started Stribild 6 days ago....

Yep, so far so good. Absolutely no side effects to report.
I fit into the 99% demographic I guess LOL.

Irish Eyes · « **Reply #71 on:** May 12, 2014, 08:25:43 pm »

Yes Leatherman, AGAIN you're right.
Doc did mention today, initially there would be a large drop in numbers and squeezing the last few out would take longer. (it was too much for me to explain at that time) Though I reckoned she was covering her butt.

I am totally unconcerned as to what the numbers are. I have enough 'grief' in my day to day life that thankfully HIV is on the very bottom rung of the ladder for me to be too concerned about.
I see doc as required and adhear to the meds. That's how simple it is for me.

Earlier I PM'ed a member and quesitoned him if I was being negligent or nonchalant.

His response was F*** off.
No, he replied borderline negligent.
My response was F*** off. LMFAO

Life is all good in our little corner of the country.
I'm off to the beach for a dip (in the water).

leatherman · « **Reply #72 on:** May 12, 2014, 08:33:30 pm »

Quote from: Irish Eyes on May 12, 2014, 08:09:53 pm

coffee yogurt

Wow. Someone else who eats coffee yogurt. mmmm Although I don't drink coffee (2+ liters of Coke a day for me! although I must confess that now that I'm going to Planet Fitness 2-3 times a week, I'm drinking a bottle or two of water every week. Yuck! the things we do for health!)

quite frankly though coffee ice cream is yummier.

Quote from: Irish Eyes on May 12, 2014, 08:25:43 pm

I'm off to the beach for a dip (in the water).

I'm jealous. I was just talking to a friend over at Myrtle Beach. I wish I was at the beach. I lived in Pensacola FL for a while and practically lived on the beach when I wasn't in classes. I wish I was at the beach right now.

xinyuan · « **Reply #73 on:** May 23, 2014, 10:08:08 pm »

Irish,

I am glad to see by your posts that you're doing well.

Your CD4 never dropped into OI prevention range, which is excellent. Once you get VL UD, all else is gravy.

Honestly, I'm jealous that you tolerate the Stribild

Best,
xinyuan

absopozilutely · « **Reply #74 on:** June 08, 2014, 02:01:35 am »

Irish.
Jerk, 7,000 views! I have no idea why I dont get nearly as many views or responses. I recently posted something, and got 1 reply. :/ Lame! And here I am just trying to be friends with everyone...Damn Lad.

zach · « **Reply #75 on:** June 08, 2014, 02:20:47 am »

Quote from: absopozilutely on June 08, 2014, 02:01:35 am

Irish.
Jerk, 7,000 views! I have no idea why I dont get nearly as many views or responses. I recently posted something, and got 1 reply. :/ Lame! And here I am just trying to be friends with everyone...Damn Lad.

its the accent

absopozilutely · « **Reply #76 on:** June 08, 2014, 11:35:25 am »

Lol! Nobody here has even heard it! Except for me! Haha! We talk almost daily, and trust me you can't understand a damn word!! Lol!

Irish Eyes · « **Reply #77 on:** June 08, 2014, 03:54:39 pm »

Zach, of course it's the accent, partially. The sapphire blue eyes, dashing good looks and perfect coif help somewhat.

Abso, yur gonna make everyone envious.
Be thankful for ESL classes. anyway it's typically me that asks u to repeat yurslf.

absopozilutely · « **Reply #78 on:** June 11, 2014, 01:58:02 am »

Quote from: Irish Eyes on June 08, 2014, 03:54:39 pm

Zach, of course it's the accent, partially. The sapphire blue eyes, dashing good looks and perfect coif help somewhat.

Abso, yur gonna make everyone envious.
Be thankful for ESL classes. anyway it's typically me that asks u to repeat yurslf.

I am SO rolling my eyes right now at you. You rarely ask me to repeat myself! Unless i'm talking fast or screaming through my road rage fits.

Abso!

Irish Eyes · « **Reply #79 on:** June 21, 2014, 10:23:49 pm »

Approx 10 weeks on Sribild (from start to last blood draw) and slowly creeping closer to UD.
My weight has plateaued at all of 140lb. ie 25lb shy of my usual weight, with a gain of 7lb since Christmas. (7lb pretty damn impressive).
Doc agrees possibly due to my low calorific intake is why it's taking so long to reach UD.
Thankfully I am really not bovvered.
Now I've got the munchies.

Irish Eyes · « **Reply #80 on:** June 22, 2014, 12:26:34 am »

Next blood draw stretched out to 6 weeks since last.
Should be on or about 21st July with doc appointment on 29th July.

absopozilutely · « **Reply #81 on:** June 22, 2014, 07:30:35 pm »

I don't understand how I can have 500+ CD4 @ 35% and you have 900+ at 32% that's confusing!

Abso!

leatherman · « **Reply #82 on:** June 22, 2014, 08:30:45 pm »

that percentage (for what little it matters) is the ratio of cd4 cells and cd8 cells. You simply have a higher ratio.

Quote

The CD4/CD8 ratio is a reflection of immune system health. A normal ratio is between 1 and 4. People without HIV infection generally have a greater number of CD4 cells than they have of CD8 cells. As people get older, the immune system's defense against pathogens is weaker and the CD4/CD8 ratio tends to decrease. People with autoimmune diseases tend to have an increased CD4/CD8 ratio, while those with viral infections have a decreased ratio.

Within six months of seroconversion, the CD4 count generally decreases about 30% and the CD8 count may increase by about 40%, resulting in an inverted ratio that is generally less than 1. With antiretroviral treatment, the ratio may revert toward 'normal'. Long-term non-progressors and those who start antiretroviral treatment early on generally have a normal CD4/CD8 ratio.

Factors affecting CD4 count and subsequently the CD4/CD8 ratio are some viral infections, tuberculosis, corticosteroid use, seasonal/diurnal variations, and variations in CD4 analyses.

Although not too much attention is paid to ratios now, one study found that the only independent predictors for immune reconstitution inflammatory syndrome (IRIS) were a low baseline CD4 count and a low CD4/CD8 ratio. Those people with a CD4/CD8 ratio of less than 0.15 were more likely to have an IRIS event than were people with a ratio greater than 0.30.1

http://www.aidsmap.com/CD4CD8-ratio/page/1733224/

Irish Eyes · « **Reply #83 on:** July 31, 2014, 04:40:49 am »

Thanks Abso. (for posting my UD status in a NEW thread). Whaaattt.
My glitch wasn't really technological, it was more mechanical as the crank to start up this machine wasn't fully engaging with the engine. The hammer fixed it.

Anyhoo. to update in my thread, I finally arrived with undetectable result on
July 22.

leatherman · « **Reply #84 on:** July 31, 2014, 08:09:08 am »

Quote from: Irish Eyes on July 31, 2014, 04:40:49 am

I finally arrived with undetectable result on July 22.

nice. 4 month to UD, 7 months out from initial dx. very nice

Irish Eyes · « **Reply #85 on:** September 29, 2014, 08:55:13 pm »

New VL number.

With over 10,000 views, I thought it would be nice to revive this zombie thread and return it to page one.

absopozilutely · « **Reply #86 on:** September 30, 2014, 12:15:09 am »

Quote from: Irish Eyes on September 29, 2014, 08:55:13 pm

New VL number.

With over 10,000 views, I thought it would be nice to revive this zombie thread and return it to page one.

Rub it in. Jerk

Irish Eyes · « **Reply #87 on:** September 30, 2014, 10:22:19 am »

LMAO.
Someone feeling a little uppity ?

Irish Eyes · « **Reply #88 on:** October 15, 2014, 05:03:05 am »

I'd like to take this opportunity to express my gratitude for not continuing the birthday thread and announcing the actual date of my birthday.

But I do appreciate the slice of cake with a cherry on top on my profile summary which appeared magically TODAY. lmao

Jeff G · « **Reply #89 on:** October 15, 2014, 08:58:44 am »

Happy Birthday my dear man . The cyber cake is just a looking cake and is not magically delicious . I made a cake once and accidentally used fried chicken grease so it was a looking cake and not a eating one .

Irish Eyes · « **Reply #90 on:** October 15, 2014, 01:24:57 pm »

Thanks Jeff.
It does look like one of those low fat, low calorie 'healthy' cakes.
Thankfully I'm trying to maximize my calorific intake and take pleasure salivating over it till the real one appears tonight. (choc gateau with fresh cream).

I jst hope it's big enough to hold nearly 5 packs of candles. lol

edited. 5 packs sounds too many it's only 4.8 packs

Irish Eyes · « **Reply #91 on:** October 16, 2014, 05:31:43 am »

By the way.
I just read through most of my original post from the start.
I miss Pittman. Where is he ?
I'd like to say thank-you for your words of encouragement.

On hindsight we just read these random posts and react, but on reflection on the whole process, it's those well chosen words of explanationand encouragement that make the process more than bearable, and help lighten the load for us newbies.

absopozilutely · « **Reply #92 on:** October 16, 2014, 09:55:52 am »

Quote from: Irish Eyes on October 16, 2014, 05:31:43 am

By the way.
I just read through most of my original post from the start.
I miss Pittman. Where is he ?
I'd like to say thank-you for your words of encouragement.

On hindsight we just read these random posts and react, but on reflection on the whole process, it's those well chosen words of explanationand encouragement that make the process more than bearable, and help lighten the load for us newbies.

!

pittman · « **Reply #93 on:** October 20, 2014, 04:23:44 pm »

Still here Irisheyes, I just get busy with work travel and all. Just back in the states last night and getting used to my normal timezone.

Glad to read along and see how your health has improved and seemingly the rest of your life.

Irish Eyes · « **Reply #94 on:** December 27, 2014, 12:20:47 am »

I trust you all had a good Christmas and are enjoying the holiday.

So a year to the day since dx.
Weight leveled out at an astounding 141lb.
Managed to gain 8lb in the year.
Latest numbers from November CD4 1350 @36%
VL <20

At last appointment ID as VL should read UD (but never has) suggested getting more sensitive test, and showed some concern with the possibility of switching meds.

That's it. Nothing out of the ordinary to report.
Have a happy and prosperous 2015.

pittman · « **Reply #95 on:** December 27, 2014, 12:42:46 am »

I'm confused, a VL less than 20 is undetectable. Why the thought to change meds?

And I hope your holidays were good too. I used to weigh 140ish, now 150. Could use some more excercize to make the extra 10 a good thing.

zach · « **Reply #96 on:** December 27, 2014, 07:05:01 am »

aww irish, best christmas ever seeing you again ((((irish))))

you fat ass!

totally agree with pittman, <20 IS UD... your doctor seriously wants to switch your meds over that?!? i'd think long and hard about that man, doesn't sound right to me. in the absence of side effects or some very valid reason... what would the point to switching up be?

Irish Eyes · « **Reply #97 on:** December 28, 2014, 04:12:51 am »

Well Well Well !

The leading questions just drew me in. (sucker)

I have no side effects but her only valid reason (as she explained very convincingly) seems to be that the result of <20 means that "some" virus is still present and test result SHOULD read UD (as in NO virus detectable).

My understanding, from the start, was that there is always virus swirling around and that a result of <20 was the lowest number current testing could give and was considered UD.

I'm content with <20. She seems to be determined. Apparently there is a more sensitive test IDK. Bloody girls !

I've really no intention of changing from Stribild. (especially when chewed and chased with a shot of Bacardi) I'm joking. Tequilla.

Oh and Zach. Watz up with the derogatory name calling. If anything it should be flat ass.
I'm down from 32" waist to a flattering 29"

The last time I bought size 29 was for school uniform about an eon ago.

leatherman · « **Reply #98 on:** December 28, 2014, 10:29:34 am »

Quote from: Irish Eyes on December 28, 2014, 04:12:51 am

I have no side effects but her only valid reason (as she explained very convincingly) seems to be that the result of <20 means that "some" virus is still present and test result SHOULD read UD (as in NO virus detectable).

My understanding, from the start, was that there is always virus swirling around and that a result of <20 was the lowest number current testing could give and was considered UD.

I'm content with <20. She seems to be determined. Apparently there is a more sensitive test IDK.

there is a test that can measure to <2 - but why bother? We know that we will never have 0 virus. There really is no such thing as no virus detectable, although if a patient was successfully treated and the test was sufficiently sensitive it could seem as if the patient has 0 virus. However, research has proved that even in that best case scenario, the patient would still have latent reservoirs of virus in the gut, lymph nodes, brain, and other areas. that's the whole reason we have to take daily meds - to maintain undetectable when the reservoirs "spill over". Wouldn't it be nice to just take meds until we tested <2 and stop because we were "cured"? but that's not how HIV works.

is this an infectious disease/HIV doctor or general practitioner? That explanation she gave, in all honesty, is stupid and totally incompatible with current HIV treatment guidelines. Quite frankly, you are paying for bad medical advice if your doctor doesn't understand what <20 means. Maybe your doctor doesn't know enough about HIV to understand that there isn't that much difference in <20 being undetectable as there is with <500 (which used to be considered undetectable seven yrs ago or so when tests were only that sensitive)

As someone who has lived with HIV for 31 yrs (11/20) and AIDS for 22 yrs (12/26), if I had a doctor who was insistent on changing meds when I was Undetectable (<20 IS undetectable) and having no side effects, I would find another doctor who actually studied HIV treatment and care and understood what the test results mean.

Jeff G · « **Reply #99 on:** December 28, 2014, 10:33:59 am »

I agree with Leatherman ^^^ That .

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Author Topic: Newly diagnosed and no sense of urgency from dr. (Read 47248 times)