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Author Topic: Get Ready For A Bumpy Ride.....  (Read 5045 times)

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Offline Lwood

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  • Here's Lookin At You....
Get Ready For A Bumpy Ride.....
« on: July 03, 2006, 05:38:18 PM »
Well I just got my latest Labs .... Just not too good but let me Expound:

I get a new doc, (actually an old doc)
one of the ones that founded our local clinic, so I figured he was pretty good, Oh Gawd how wrong.....
 Well he plays catchup with a bunch of background questions before getting to my labs, I read ahead and saw the numbers vl up for the third time, cd4 # down... cd4% down by 10 %....  so heres his lame assed explanation:
"Well your cd4 count is good its dropped some but its still good  500 is a good number"
L:" What about the percentage ?"
D:" What Percentage?"
L"The CD4 percentage ?"
D:" I dont know, let me see, oh well it isntvery important anyway"
L:"I thought the precentage is a better indicator of your CD4 than just the count"
D:, big condescending grin.." Not to ME it isn't"
Lwood bites tongue. mentally chalks up strike ONE.
Then a lengthy discussion about cholesterol in which he blames Reyataz,9 the one PI with the least incidence of Cholesterol problems)  He tells me that he wants me to begin taking a statin since the fish oil and Niacin seem to have plateaued in their effectiveness and my #s are still way too high. OK, I expected this at some point anyway and have done some homework on Statins and HIV...
Doc" Id like you to Take Lipitor"
somewhere a red light warms up and slowly pulses.
Doc goes on to downplay the 'stories You May Have heard about Statins' etc etc.  then perfectly describes Myopathy, although not by name, as a side effect. 
"So when should I take it?" at this point Im just playing with him...
"Anytime,"
L:" theres no interaction with the meds Im taking? "
D" Nah,'
He then goes on a bit and orders a chest  X Ray.  WTF? I have no respiratory probs and never have.
He then orders labs and mentions that hed like to get a genotype done since it looks like I may be developing resistance... ( the only thing I agree with)  except he forgot to add it to the form, I mentioned it to the nurse.
He also orders a TB test, which I had a year ago, but the nurse explained was a yearly thing.. ok whatever its painless.
Jumping ahead  a bit, he returns with the scrip for Lipitor ( 20 mg. 5 refills) and a lab order for liver function tests 30 days later. he briefly explains why I need to get tests after 30 days.
L:" OK, I just was worried about any interactions with my med combo"
Doc: " No there isn't anything to worry about there. Hey, I take Lipitor too" big comforting grin.
Eat my Fucking Shorts you Ass Quack ( todays new word boys and Girls )
Jumping ahead a bit.... I type LIPITOR into my Meds Interaction thing and get two Big Red Light "MAJOR INTERACTION" warnings for Reyataz and Norvir. Duh.  I already knew that but now I have it in Black and white.
'....should not be taken with Lipitor due to potential severe interaction" 
I still plan to take the prescription down to the pharmacy and have it filled just to see them spin out when their computer starts flashing a skull icon and spitting out Major Drug Interaction Warning sheets and their head Pharmacist calls 'Dr. Kevorkian'
( Probablly not for the first time either Im guessing)  and explains that Protease Inhibitors and Lipitor are a major No No ...
OK, So I now have ZERO confidince in this guy, my labs show signs of resistance, So I may have to switch meds after the genotype test comes in and I DAMN SURE need to switch Docs, which might not be too easy since my cinic is going through some kind of shakeup and has replaced alot of people lately...I should have known something was up when they stopped puttting POZ magazine in the waiting room.

So Is This A Vent? A Rant? A Cry For Help? I dunno but Im plenty pissed right now.
Im not even sure whether to believe this fartknocker about showing signs of resistance. Afterall CD4 % isnt important to HIM... )*( ...
I want my other Doc back. Younger, Wiser. Probablly why shes not there anymore.. But for now I guess Ill just go with Bud Wiser.
The receptionist wished me a 'Happy July 4th" on the way out.  You bet your Ass sweetheart, and the fireworks are just beginning.

AIDSmeds has now officially saved my ass,( on top of several less official times)  so Ill celebrate That tomorrow ( AM, not my ass) and blow something up (again, not my ass) and then be merry and happy as usual ( hopefully WITH my  ass)  ::)     

Lwood
Pissed and Resistant.

PS. anyone want some Lipitor ?? Willing trade for a 12 Pack....

"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Get Ready For A Bumpy Ride.....
« Reply #1 on: July 03, 2006, 05:43:49 PM »
OMG, get three to an ASO and get yourself a competant HIv specialist. Holy crap!

Nothing is worse that getting served crap on a plate, with a smile.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Cliff

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  • Posts: 2,645
Re: Get Ready For A Bumpy Ride.....
« Reply #2 on: July 03, 2006, 05:47:01 PM »
You should get a new doc.  The sad part is what about all his patients who just blindly trust his advice?

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Get Ready For A Bumpy Ride.....
« Reply #3 on: July 03, 2006, 06:03:14 PM »
Jeeeeeeeeeeeeeeeeeeeeeeeez,

No wonder that blood is spread all over your face on your icon; you have been beating yourself in the face and making yourself bleed, because it was less painful than living this experience.  Shit!

Well, Jonathan is spot on.  You can demand coverage for any doctor you would like to use, you just might not be re-reimbursed for getting to the office.  Don't know about Florida, but you can definitely pick another doctor, and I highly recommend that you report this one to the state pharmacy board, the State Health Department HIV/AIDS bureau and the state medical licensing board.  Now, there in Florida there has to be some Queen in those offices that will pick the complaint up and run with it.  Please, Lwood, remember you have been given knowledge of the insanity that this man is creating; now what are you going to do with that knowledge?

Oh shit, I didn't mean to go there, but I have to leave it because of brain flow and such.

I trust you will take care and get thee away from this very strange person.

In Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline RAB

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Re: Get Ready For A Bumpy Ride.....
« Reply #4 on: July 03, 2006, 06:15:24 PM »
L:

If you aren't comfortable with this guy, I wholeheartedly agree you should search out a different doctor.

On the issue of Lipitor, well there I'm taking a slightly different stance.  I use 20mg of Lipitor daily, take it with my evening dose of meds, which includes both Kaletra and Invirase. 

I remember this issue came up a year or so ago, because apparently a lot of patients on PIs are using Lipitor (20mg) and having no problems.  I remember when I first started it, my doctor did monitor me monthly for the first 6 months though.


RAB

Offline allopathicholistic

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Re: Get Ready For A Bumpy Ride.....
« Reply #5 on: July 03, 2006, 06:40:57 PM »
The receptionist wished me a 'Happy July 4th" on the way out.  You bet your Ass sweetheart, and the fireworks are just beginning.

L: Give 'em hell  >:(  Thanks for sharing. Ya never know who you'll help just by sharing stuff like this. For exmple I didnt know the TB test was yearly

Here's hoping the best for you

(I'm thinking of a word. ...rhymes with 'practice' and starts with 'mal')


Offline Cliff

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Re: Get Ready For A Bumpy Ride.....
« Reply #6 on: July 03, 2006, 06:55:34 PM »
I didn't know you were suppose to get a yearly TB test done either.  I haven't gotten one since 03.

Offline Life

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Re: Get Ready For A Bumpy Ride.....
« Reply #7 on: July 03, 2006, 06:55:59 PM »
Fire the "Ass Quack" :'(

Offline DingoBoi

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  • Bailey's Infected Creamô Served since 2004
Re: Get Ready For A Bumpy Ride.....
« Reply #8 on: July 03, 2006, 06:58:21 PM »
gawd dammit, I didn't see poz at my last doctor's appointment... but I did get to read another S&S for black people.. didn't recognize the name and don't remember it, but was surprised to see S&S on the cover.  I didn't realize they published more than POZ.

That shoulda been the only clue needed  >:(

But screw him, get yourself a competent doctor and report his incompetence.

Bailey (who thinks it's the patients responsibility to double check everything the doc does to watch out for AssQuacks like him)


Offline Lwood

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Re: Get Ready For A Bumpy Ride.....
« Reply #9 on: July 03, 2006, 07:02:12 PM »
I definitely plan to ask for another docs second opinion given the major interaction warnings for TWO of the drugs in my combo  and if I can get some HARD information ( like warnings from the drug co and some medical literature)  id like to have that on hand too. There are a couple of statins that are OK'd for use with my PI combo ( Reyataz Norvir Epzicom)  and are also OK'd with ADAP but I cant recall the names.

Jonathan,  The sad thing is that this IS my ASO... I need to find out what the hell is up, I smell funding problems or some pissing contest with the Administrators.  

Is it possible that Im developing resistance this soon on a combo that had me undetectable after 5 months?, very low vl after 3 months..
 I have perfect adherance and no OI's besides  KS which has stopped in its tracks.....  
"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash

Offline J.R.E.

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  • Posts: 6,964
  • Joined Dec-2003 Living positive, since 1985.
Re: Get Ready For A Bumpy Ride.....
« Reply #10 on: July 03, 2006, 07:24:20 PM »
Lwood,

 I think this is why, I feel this this need to print everything out these days. If there is something that is really troubling me, I want to have that documentation with me, so that it can be discussed in detail.

I understand my doctor is busy, but I certainly want him to try to understand my concerns also !!

I remember back in 2003, when my lips looked like chopped meat. I was prescribed Valtrex. The minute I read the instructions, I notice it says do not use in advanced HIV desease. Well, I was pretty advanced. With 16 t-cells and viraol load at 500,000.  I called the doctor, and he still insisted I use the medication.
Well, the problem went away quite fast....

I understand there are some statins, that shouldn't be used. I am not sure off hand what they are. I am on Zocor 20mg. As far as the chest x-ray. Have you ever had one since diagnoses? I have had two of them in 3 years. And of course the TB, I get checked annually.

Anyway, good luck. Just sending some support your way..


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Steven

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    • A Place To Start
Re: Get Ready For A Bumpy Ride.....
« Reply #11 on: July 03, 2006, 07:27:47 PM »
Is it possible that I'm developing resistance this soon on a combo that had me undetectable after 5 months?, very low vl after 3 months..

How long have you been on this combo?

Also you can contact the manufacturers of Reyataz and Norvir and ask them
about the Lipitor interactions, if they say do not take it then have them send you the info directly, the pharmacy if it is a good one should see it and may contact the doctor to have him change it out also.

You do not have to put up with such an incompetent doctor get a different one!

Offline Lwood

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Re: Get Ready For A Bumpy Ride.....
« Reply #12 on: July 03, 2006, 08:50:42 PM »
OK Ok... Ive calmed down a bit.... Thanks Everybody.

Ive been on This Combo since April '05... about 14 months  I was wondering if maybe just ONE component of the combo needs to be switched out or if I should just wait and see... my vl went from undetect. to 500 to 700 to now 1300... the cd4 is now 25% from 37% last time... I havent been sick.   

A very brief internet search found  Prevacol and Prevastatin as the statins of choice for use in combination with PI therapy. (web MD)  Its possible that he wanted the Chest XRay to check for KS lesions in my lungs, but since my KS is very minor and stable I doubt it.  Sounds like Ol' Country Doc crap to me.
"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash

Offline RAB

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  • Joined March 2003
Re: Get Ready For A Bumpy Ride.....
« Reply #13 on: July 03, 2006, 09:22:05 PM »
Hi L:

We've got several issues going on here.

1.  Your new doctor. 

If you are not comfortable with him (as opposed to the news he delivered) then I would definitely encourage you to seek out another provider.

2.  The issue of Lipitor.

I wish I were more technically knowledgeable to talk about this.  The only advice I can give is based upon my experience.  The decision for me to use Lipitor was based upon the following:

  a.  My cholesterol was way too high.
  b.  I have a family history of heart attack and stroke.
  c.  I am a smoker.

Based upon these risk factors, I felt the risk of having a heart attack or stroke was the more important issue.  (not ignoring the "risk" of using Lipitor mind you)  In other words I needed to evaluate one risk against the other.  Luckily, it worked out.  My cholesterol is now running about 170 and I am having none of the potential risks associated with mixing Lipitor with the PIs.  However, the fact that you've found other statin options that can be used would absolutely be the way I would go.

3.  Resistance.  The big elephant in the closet and what I suspect is driving the concerns you have raised. 

Honestly, without the data of a resistance test there is no way of knowing for certain whether your current regimen is appropriate.  However, it would seem likely that resistance is something that needs to be considered.

So let's assume that your current regimen isn't strong enough to provide optimal control of the virus.  (Which we don't know yet.)

My question would be what is your goal?

If your goal is to achieve optimal viral control then there are several possibilities.

Depending on the results of the resistance test you might want to:

A.  Consider a dual PI regimen with Fuzeon.

B.  Consider using the newly approved PI (TMC 114) with Fuzeon

C.  Seek out other treatment options (based upon the results) that offer potential for optimal viral suppression without extinguishing future treatment options.  (Jesus what the hell did I just say?)  I guess I mean it might be possible to avoid Fuzeon and TMC 114 and still come up with a regimen that is more durable than the one you are currently on.

If your goal isn't to achieve optimal viral suppression then it might not be a bad idea to consider going on something to "place you in a holding pattern". 

By that I mean, (again the resistance test results are key), maybe using a regimen (trizivir?) that will bring out the most mutations (without achieving viral suppression) so that the damage done is minimized.  The advantage to this strategy is you are preserving future treatment options.

O.K. here's the key point.  Whatever choice you make, there is no right or wrong answer.  You are not in a crisis.  You have the luxury of changing your mind in the future based upon where your labs go.  Remember the most important thing isn't to win every battle, but to win the war.

If it were me, I'd wait to see what the results of the Resistance test are.  I'd consider what the doctor proposes.  I'd sort out the personal decision of what my goal is.  But most importantly I'd move forward armed with knowledge, confidence, and the understanding that I can amend my strategy at anytime without major consequence.

RAB


Offline livingpositively

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  • Posts: 369
Re: Get Ready For A Bumpy Ride.....
« Reply #14 on: July 03, 2006, 09:26:29 PM »
Christ on a cross...WTF??!!!  And these are the people we're expected to trust our lives with, not just with HIV, but other docs as well.  It's a sad state of affairs.

Good luck Lwood, I hope things work out for you.  I have a feeling this dude doesn't know what he's in for dealing with you.  GIVE EM HELL!!!

Shane
4/6/07   CD4 450, % 23, No VL
2/19/07 CD4 487, % 26, VL 47,500
1/4/07   CD4 357, % 27, No VL
10/3/06 CD4 500, % 26, VL 18,000
7/6/06   CD4 530, % 29, VL 83,800
4/6/06   CD4 555, % 28, VL 13,000

Offline aztecan

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  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Get Ready For A Bumpy Ride.....
« Reply #15 on: July 03, 2006, 09:55:19 PM »
Lwood,
This new doc's medical advice is downright abysmal. To make matters worse, he serves it up with a heavy dose of condescension.

YIKES! >:(

I didn't know a TB test was needed annually either. I haven't had one done since 1999, although the jury is still out regarding my potential need to have one done in the near future.

As for the statins, RAB was a lot luckier than I was. My doc put me on Vytorin, which is a combo drug made up of Zetia and Zocor. After six weeks, he made a point of coming up to me while I was visiting the office on other business and inquiring whether I was still taking it.

I had just had a liver panel, etc., done to check whether there were any problems with the new addition to my regimen.

I said, "Yes." He said, "Stop, now!" Turns out my liver was beginning to have serious issues as a result. That also explained the myopathy I was experiencing, and continued to experience for two months thereafter.

Rare side effects my ass.

I would be looking for a new doctor if I were you.

HUGS,

Mark

Wanna trade? I'll give you some Vytorin for some Lipitor?
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Dachshund

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Re: Get Ready For A Bumpy Ride.....
« Reply #16 on: July 03, 2006, 10:20:09 PM »
Lwood,

I would think the first order of business would be genotyping. You have plenty of time to worry about Lipitor later. RAB is right you need to know if you are resistant to any meds. It is my understanding if no resistance shows up you are free to stop and start the same med. At least that is what my doc said when I changed my meds a couple of times.

Also, did you ask why a TB test was ordered? I know there are times my doc orders something from the lab and does not tell me why unless I ask.

I noticed you use ADAP. Does that limit your choice of who you can see? I know it does for me, which can be a real bitch.

Take care buddy we are all thinking of you.

Hal

Offline Lwood

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Re: Get Ready For A Bumpy Ride.....
« Reply #17 on: July 03, 2006, 10:26:04 PM »
Rab,
 Ya I think that one big issue is that Im uncomfortable with this guy and his condescending attitude. I tried to ask some intelligent and informed questions ( the cd4 % for instance)  to let him know that Im an 'informed patient' but aparently that didn't work. When he described the myopathy he spoke in terms of 'When' and not 'if'    Id prefer the
'Lets avoid this at all costs' aproach.   It seems that hes a doc that deals with patients dieing of AIDS, not living with it. In any event I aint gonna see him again.  besides he dresses like shit., I mean seriously, 1980's  crap. It matches his attitude.  Maybe they just brought him out of mothballs to fill in for the Holiday and he got carried away acting around all of the young ID specialists...
As for the choice of Lipitor,  why would he chose it if there are so many warnings, and safer , preferred alternatives readily available?  I also dont apreciate the fact that he didnt acknowlege the interaction warnings at all, or didnt know about them... Im not the least bit shocked by WHAT he, or rather the Lab results, had to say, Ive been anticipating the need for statins, and did some research, hence, I knew  shit from Shinola ...
Im sure that Lipitor works well for alot of people on PI combos, obviously it does !  but I would have prefered to hear some options at least....and straightforeward answers. He just plain lost credability with me.
Im more worried about the resistance issue, IF thats whats going on here,  I really thought that I had a winning combo on the first try , however if my meds need to be tweaked a bit  I just cant trust someone who brushes off cd4% numbers as a useless lab statistic.
Luckily, I know that there are plenty of options open if there's a resistance issue, Im an informed Patient afterall.

Wasn't it Joan Crawford that suposadly said " Dont Fuck With Me Boys, This aint My first trip to The Show"
Perhaps we should all get stickers for our files  CAUTION : AIDSmeds Member !! Don't FUCK With
"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash

Offline david25luvit

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Re: Get Ready For A Bumpy Ride.....
« Reply #18 on: July 03, 2006, 10:44:13 PM »
Ass Quack....I like that one.  And don't walk.  Run to a new doctor.  What a Putz!
Poor Baby.........and the Bible says "suffer the little children"  What about the idiots with medical licenses?
Must we suffer them too............ >:(
Jeppers! :o
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Robert

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Re: Get Ready For A Bumpy Ride.....
« Reply #19 on: July 03, 2006, 11:38:04 PM »
Well, lwood, thanks for sharing.  I guess that's how we all learn.  I'll be the first to admit, I'm a slow learner but things are finally starting to sink in.

My cholesterol went up to 260 but my Dr was adamant about not recommending any satins.  She told me I need to be more careful with what I eat and she was right.  Now I'm down to 190. 

I've been taking notes, as usual, and when I see her at the end of Aug I'll ask her about the TB and the chest xray.  I'm real curious about that.  It will be 3 years this Oct when I was diagnosed with PCP.  I wonder how the lungs are now.

And, yeah, get a new doc.  Make sure he is friggin board certified (ID preferably). 

robt

..........

Offline RAB

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Re: Get Ready For A Bumpy Ride.....
« Reply #20 on: July 04, 2006, 08:54:11 AM »
L:

For some reason I didn't realize this was your first combo.  sorry buddy, that was my mistake when I suggested all the other options earlier.  You obviously knew you had options and it wasn't necessary for me to lay all that out there.  Again I had it in my head you had used other combos before.

The issue of statins certainly something to discuss with the new doctor.


RAB

Offline Tim Horn

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Re: Get Ready For A Bumpy Ride.....
« Reply #21 on: July 04, 2006, 09:05:50 AM »
Lwood:

Adding another voice to the choir, it sounds as if you'll definitely want to look into finding a new doc.  Nuances aside, the fact that you don't have a lot of concidence in him is reason enough to begin working with someone else.  

Now, as for the Lipitor, its one of the "fine line" statins in terms of drug interactions.  As a rule of thumb, the statins that should not be used are Zocor and Mevacor (protease inhibitors can significantly increase blood levels of these drugs, which can lead to serious side effects).  The safest statins to use are Pravachol, Lescol, and Crestor.  Somewhere in the middle is Lipitor -- protease inhibitors can increase blood levels of Lipitor, but its still possible to take this drug carefully to reduce the risk of side effects associated with high blood levels of the drug.  

There's really no set dose for Lipitor.  Adults can take anywhere from 10mg to 80mg a day.  For HIV-positive folks taking protease inhibitors (or other meds that can increase Lipitor levels), the recommendation is to start with a low dose and then increase it if the desired effect is not achieved (and side effects do not occur).  Technically speaking, the 20 mg/daily prescription you received is a low dose of the drug... so I wouldn't be overly concerned about this.  

While some docs feel most comfortable prescripting Pravachol, Lescol, or Crestor for patients taking protease inhibitors, many docs are also comfortable prescribing Lipitor, based on their own observations and the fact that Lipitor leads the other statins in terms of data indicating that it reduces the risk of heart attacks.  

I guess what I'm trying to say is that it is possible for your to take Lipitor with your drug combo.  While your doc is wrong is concluding that there isn't a drug interaction between Lipitor and your PIs, it can be prescribed... but attention must be paid to how it is prescribed.

Tim Horn

Offline Lwood

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Re: Get Ready For A Bumpy Ride.....
« Reply #22 on: July 04, 2006, 09:19:17 AM »
The TB test and chest Xray have me stumped too, I had a TB test when I had my initial bloodwork done more than a year ago, it was neg, and by the looks of things so is This latest one. I mentioned it to the nurse and she said it was a yearly thing, The chest Xray is going to be a hassle but harmless, although I dont like the idea of pissing away Ryan White funding on unnecessary tests.
Im not sure how to go about asking for a second opinion with my clinic, but Im sure that the receptionist can steer me in the right direction, or maybe Ill go through my 'case manager' but she's hardly the sharpest pencil in the Box..
"Fortunately, I Keep My T Cells Numbered For Just Such An Emergency"
  -Either Foghorn Leghorn or Johnny Cash

Offline Christine

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Re: Get Ready For A Bumpy Ride.....
« Reply #23 on: July 04, 2006, 09:48:52 AM »
Hi,

The Ass Quack needs to go swim in another pond...

I have a TB test every year, the ppd test.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Blixer

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Re: Get Ready For A Bumpy Ride.....
« Reply #24 on: July 04, 2006, 11:06:30 AM »
Lwood,
I'm going to chime in on this one..  first of all, I'm a big believer that if you have lost confidence in your HIV doctor, get a new one.  I've only been diagnosed 5 months and dropped my ID coctor first one after one visit even though he is very well respected in the HIV community.  And I've even sought out a second opinion recently because of side effect issues I've had that I didn't feel were being taken seriously.  It's your life and your future.  If things don't seem right, I agree with the others... get the opinion of someone else till you feel confident.  I think there are enough "warning signgs" from your visit that moving on is the thing to do.

Now, a question, Did they do genotype resistance testing prior to starting you on your first regimine.  I know in a lot of places it is standard practice but I know of several ASOs that don't do them right out of the gate.  In any case, the movement you describe in the numbers would concern me. I'm sure there could be other explanations but I think your concern is warrented and the resistance test is the right route to go.  Were they just doing genotype testing or were they also doing phenotype testing?   It is also possible that it is a blip, but it seems that you do have a trend developing.

In terms of the CD4 percentage deal I wouldn't freak out over that.  In general everyone says that the CD4% is the most stable.  But I can tell you for me it is not.  For me, my CD4 can go up, and my CD4% can go down by several points.  In the past 5 months I've been as high as 717 on CD4 and as low as 356.  My CD4% was 16%  when I was at 450 and 12% when I was at 540.  Then I went to 24% with a CD4 of 680 and dropped to 18% with a CD4 of 576 or something like that.  So I think for some people the percentages just do strange things and it depends on what else may be going on in your body.    But like you, I don't like losing CD4s, I don't like the % to drop, I don't like the VL to go up. It make me think things are not working.

I think the deal is to hang in there, don't get overly frustrated or freaked, get a new doctor you feel comfortbable with as soon as possible, see what the resistance test shows, and watch the numbers closely.  I've been told that resistance on with perfect adherance is very rare.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Basquo

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Re: Get Ready For A Bumpy Ride.....
« Reply #25 on: July 04, 2006, 11:35:12 AM »
My doc never doeas TB tests done on me, but he knows that I have it done annually anyway since I work in a hospital.  Perhaps they think that we need one since we spend so much time in clinic waiting rooms?

Offline Life

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Re: Get Ready For A Bumpy Ride.....
« Reply #26 on: July 04, 2006, 08:19:00 PM »
Well, I am just pissed..... The doctor probably dropped Lwood's samples at "1 HOUR PHOTO"  instead of the lab on his way home so as not to miss the soccer match..... FUCK! :'(

Offline Jeffreyj

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Re: Get Ready For A Bumpy Ride.....
« Reply #27 on: July 04, 2006, 08:40:14 PM »
Drop this bastard like a cheap suit...and after that, complain to your Stat's Med Board. You don't have time for this crap. Horrible.
Positive since 1985

Offline sweetasmeli

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Re: Get Ready For A Bumpy Ride.....
« Reply #28 on: July 05, 2006, 04:45:16 PM »
Really...WTF is going on???
It would appear that we have an epidemic in our midst...ass quack-itis! ;D

You poor thing Lwood! Iím sorry to hear that your labs were down this time and also sorry to hear that you now find yourself with such a butt munch of a consultant!

Not meaning to thread-hijack but just thought Iíd share a few anecdotes from my recent Shingles Experience to show how and why I can totally empathize with your recent ass quack experience:

ANECDOTE 1:
Had been experiencing aches/pains for several days. Fly to UK for hosital visit. Wake up morning after arrival with very painful rash. Phone for appointment with local Go-to-doc. Appointment goes something like this:

Melia: I think I have shingles
Ass Quack 1: Whys that?
M: I've been having the signs for some days and now I have a painful rash here, here and I think here [I show AQ 3 places on right side of upper torso]
AQ1: Oh no thatís not shingles. You can't get shingles in more than one place.
M: But isn't shingles meant to move along the nerve and try to form a belt?
AQ1: You can't get shingles in more than one place.
M: Not even when itís on the same side on the body?
AQ1: You can't get shingles in more than one place.
M: But my ex had it and I know he had it in more than one place. It almost joined up.
AQ1: It's not shingles.
M: Are you absolutely sure?
AQ1: It's not shingles.
M: So what is it?
AQ1: Some sort of virus...it will pass in time...if it gets any worse come back.
I leave Go-to-doc somewhat baffled thinking to myself: But isn't shingles a virus...?

ANECDOTE 2:
The following day, the rash is getting worse. I phone Ann. She tells me to go to A&E. At A&E:

AQ2: You have shingles.
M: Yes I knew that yesterday but AQ1 told me I hadnít!
AQ2: We need to admit you into hospital and put you on intravenous anti-virals because of your status and to prevent it spreading to your face.
M: WHAT??? I'M NOT STAYING HERE!
AQ2: You donít have a choice.
At which point I cry like a baby and am admitted into hospital for the first time in my life, hooked up to a drip and stuck there for the next 24 hours.

ANECDOTE 3:
Ann has already pep-talked me about what to ask for.

M: I have been advised to take something to prevent post-herpetic neuralgia (PHN).
AQ3: That wonít be necessary. PHN is not that common. And there is no real evidence that taking the treatment will pre-empt it. Plus we donít really advise it for people in your situation.
M: Oh okÖ

ANECDOTE 4:
The following day the hospital contact my hiv consultant to see what next:

HIV DOC (aka AQ4): What on earth is she on a drip for? Get her off it, thatís total overkill! Give her some Acyclovir tablets and send her home. And no she does not need anything for post herpetic neuralgiaÖ

ANECDOTE 5:
Back home in Greece, having survived bad reaction to double dosage of Acyclovir. More than 2 weeks since onset of rash. Am experiencing very bad aches and pains still. I phone my hiv consultant in UK:
M: Itís been over 2 weeks, the rash is clearing but I am having really bad aches and pains around where the rash was.
AQ4: Ah yes, you have post herpetic neuralgia. Itís very common after having shingles nowadays. You need to take codeine and try to get some capsaicin cream. How long will it last? Well, how longs a piece of stringÖ?
M: AAAARRRRGGGGHHHHHHHHHH!!!!!!!!!!!!!!!!!!!! >:(

And I didn't even mention the other 5 ass quacks I saw during my 24 hospital sleepover...!

Lwood, if you like I will gladly form a gang with you to hunt down all the ass quacks out there and very slowly disembowel them one by one!

Thinking of you and empathizing more than you can imagine!

Melia :)
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline jkinatl2

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Re: Get Ready For A Bumpy Ride.....
« Reply #29 on: July 05, 2006, 04:58:32 PM »
It makes me shudder to think about what people who do NOT carefully research their illness must experience.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline jack

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Re: Get Ready For A Bumpy Ride.....
« Reply #30 on: July 05, 2006, 05:18:24 PM »
lipitor is OK with reyataz if taken at low levels. I have been on 10mg for the last 10 years and took it for the 6-8 months I did razmataz before resistance.
While everyone and all resources say reyataz doesnt effect lipids, i think its reyataz doesnt effect lipids as much as other PI's.  I had big time lipo fat problems on reyataz.

Offline Steven

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Re: Get Ready For A Bumpy Ride.....
« Reply #31 on: July 06, 2006, 01:48:09 PM »
The TB test and chest Xray have me stumped too, I had a TB test when I had my initial bloodwork done more than a year ago, it was neg, and by the looks of things so is This latest one. I mentioned it to the nurse and she said it was a yearly thing,

My doc has me take a TB test yearly also, I asked him why and was told that the State wanted it done yearly since they are trying desperately to keep TB under control, it was not just an hiv thing.  The State picks up the tab on it since they want it done.  I am told that I can refuse to have it done yearly if I do not want it, bottom line it is my decision, and I have the final answer.

As for your x-ray I can't give you any answer on that but if you had problems
before it could just be a preventative measure to make sure there are no problems arising they may need to know about.

I glad your looking for another doctor, this one from what you have mentioned would not cut it for you especially if you have doubts now, like you spoke of what would happen in the future, this is your life and they do not control you.

I know that in the past I had conflicting reports with certain meds and I contacted the company directly and received clarification which I then brought back to the doctor and the pharmacist who made some changes for me. I do believe we must be proactive in our health and learn since there are doctors out there who just don't give a darn or expect us to take their word  for everything since they feel they can never do any wrong....

The percentage part when you asked him about it and he acted like it did not matter really makes me wonder if he understands this virus at all.
I hope you get the resistance test soon and figure out the results, please get copies of your records so you can show them to any new doctors you will be seeing in the future.



 


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