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Author Topic: Decision Time Already?  (Read 1763 times)

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Offline Kardean

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Decision Time Already?
« on: April 24, 2014, 10:33:04 AM »
Seen my ID Monday and he is suggesting I begin ART due to what he describes as “constitutional symptoms”.   Although they are currently only mild to moderate, and I’ve had no illnesses, and my current CD4 is 784; VL 22,700… he tells me that chronic viral infection (6 years), in and of itself can cause problems.  I’m kinda bummed out about this since in the very beginning I decided to avoid treatment until necessary.  I guess I’m just afraid of beginning ART and all that goes with it for some mild “constitutional symptoms”.   It seems to me that it could only exacerbate them and or create new ones.
After doing some research, I’ve not found any convincing evidence that ART will reverse and or change any of these symptoms.  Therefore, I would appreciate any feedback on this, especially if anyone has had a similar situation like mine.

Offline aaware72

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Re: Decision Time Already?
« Reply #1 on: April 24, 2014, 10:43:54 AM »
I can only tell you from my experience is that being on treatment has not caused me any issues as of yet.  I started in Feb13 on Stirbild.
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Online zach

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Re: Decision Time Already?
« Reply #2 on: April 24, 2014, 10:50:23 AM »
you're being pretty non-specific about what these symptoms are. its not so much that ARVs will adress all that ails you, its that ARVs will allow your immune system to rebuild and, and begin fighting for itself. ARVs only do one specific thing, attack HIV. all the other good stuff that comes with them, is your own body regaining the strength to fight.

Offline Jmarksto

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Re: Decision Time Already?
« Reply #3 on: April 24, 2014, 11:10:55 AM »
Kardean;  The question of when to start meds is a very personal decision, and may include a number of factors such as your financial situation, likelihood of adherence, reduced transmission risk, etc. 

If the question is just about the individual medical trade-off between being on meds or not I would point out that our CD4 numbers aren't the only thing to consider - that measurement is a proxy at best as to how our immune system and overall health are doing.  There are some longer term folks here that can give more personal experience on that point.  Related to that point, it isn't just the numbers but also the trends - how have your numbers (%CD4 too) been trending?

In terms of the meds creating new, or exacerbating, "constitutional symptoms", I don't think that is the case.  The meds will reduce the viral load and thus reduce the constitutional symptoms of the virus.  If you are concerned about side effects of the meds, then the discussion is really about which meds are right rather than whether to take meds or not.  The reality is that very few people get side effects from the newer meds.

The other point is that if your doctor is recommending meds, and you trust him/her, that is a pretty strong factor in my eyes. I also understand how seriously your are taking this and doing your own research.

Finally, there is only one study I am aware of that looked at when to start meds and mortality:

http://forums.poz.com/index.php?topic=53561.0

Also, a belated welcome to the forums,
best,jm
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline Kardean

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Re: Decision Time Already?
« Reply #4 on: April 24, 2014, 11:16:10 AM »
you're being pretty non-specific about what these symptoms are. its not so much that ARVs will adress all that ails you, its that ARVs will allow your immune system to rebuild and, and begin fighting for itself. ARVs only do one specific thing, attack HIV. all the other good stuff that comes with them, is your own body regaining the strength to fight.

Weight/Muscle loss, Myalgia & PGL of neck

Offline eric48

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Re: Decision Time Already?
« Reply #5 on: April 24, 2014, 11:20:23 AM »
One thing important to remember in starting meds:

- you should not stop until you are UD. If you stop in the process there is a (small) change to develop resistance. You don't need that

- What happens if you stop meds (after being UD):
your systems returns to its pretreatment equilibrium. Meds have 'freezed' the frame, permafrost the virus. If you stop, using proper procedure, you'll be back at CD4 700 and VL (usually) smaller, and the dynamics of things have not changed

So, my doc has a killer point: with your numbers (he told me) you can afford to stop if you want.(I had 500)

A strong pro meds argument is
Why hesitate to engage in a journey when you know you can safely get back home

Most people can not afford to stop meds, but, you you can

The argument against start meds is the snow ball effect:
My script used to be 2 lines long: it is now 2 pages

ARVs, are NOT just anti-Virals: they do not kill the virus, nor all of the infected cells: they are INHIBITORS

Inhibitors that bind to reverse transcriptase or what ever... They bind... They do NOT bind Exclusively, they bind other enzymes that your body uses

One of the drug I use is also a CETP inhibitor... it may also bind some other enzymes in the brain or wherever

So they are not as specific as we might think

so the snow ball goes like this:
meds (may) increase your cholesterol
so they put you on statin (another inhibitor) (like 20% of Hivers!)
but the statin disrupt your glucose intake
so they put you on Metformin (and later on insulin may be...)
- you get head ackes and meds induced stress
-> they put you on anxiolytic (another type of inhibitors)
- your life is becoming miserable: -> depression
-> no problem they have inhibitors of inhibitors

etc, etc, etc, etc

This is when you will remember this: given your current immuno-virologic status you can always says STOP

I was not sick at all before the meds and I still support the idea of starting early (in my case) (yours is different since you have been infected more than 6 years)

Now, I am intoxicated...

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline mecch

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  • red pill? or blue pill?
Re: Decision Time Already?
« Reply #6 on: April 24, 2014, 11:48:56 AM »
Weight/Muscle loss, Myalgia & PGL of neck

Start your meds, dear. 6 years is a nice run AND you have fine numbers to start now, you'll be superhuman fit in a few months... (or almost  ;D )

6 of one, half a dozen of another, I'm amused by your title thread Decision Time Already, when you have had 6 years....

IMO the meds WILL help the weight and muscle loss issue...  Probably myalgia too! 
People with untreated HIV often have a hard time keeping on weight and bulk.  You'll see. You could easily be a bit plump, if you'd like to be, chilled out on meds...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online zach

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Re: Decision Time Already?
« Reply #7 on: April 24, 2014, 11:51:27 AM »
Weight/Muscle loss, Myalgia & PGL of neck

have you experienced these symptoms? or is this a fear?

Online zach

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Re: Decision Time Already?
« Reply #8 on: April 24, 2014, 11:55:53 AM »
off meds, with low numbers and sick, i lose weight, freakish fast. on meds, i look like a living human being, i flesh out and look healthy

off meds, again, thats when it hurts

lymphnodes, only bothered me at the two sickest points of my life, i'm talking near the bottom

what i'm saying is, the things you're talking about... is what it feels like to be off meds, and sick

when the sick kicks in, there is no doubt

time to take your meds

Offline mecch

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  • red pill? or blue pill?
Re: Decision Time Already?
« Reply #9 on: April 24, 2014, 12:01:13 PM »


so the snow ball goes like this:
meds (may) increase your cholesterol
so they put you on statin (another inhibitor) (like 20% of Hivers!)
but the statin disrupt your glucose intake
so they put you on Metformin (and later on insulin may be...)
- you get head ackes and meds induced stress
-> they put you on anxiolytic (another type of inhibitors)
- your life is becoming miserable: -> depression
-> no problem they have inhibitors of inhibitors

etc, etc, etc, etc

This is when you will remember this: given your current immuno-virologic status you can always says STOP

I was not sick at all before the meds and I still support the idea of starting early (in my case) (yours is different since you have been infected more than 6 years)

Now, I am intoxicated...

Eric

I don't find this a particularly positive, or constructive, or applicable thing to say to one individual person whose doctor recommends beginning treatment.

Plus, once you start, you really don't stop. So why hold out that carrot after the doom and gloom prediction?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline aaware72

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Re: Decision Time Already?
« Reply #10 on: April 24, 2014, 12:26:03 PM »
I don't find this a particularly positive, or constructive, or applicable thing to say to one individual person whose doctor recommends beginning treatment.

Plus, once you start, you really don't stop. So why hold out that carrot after the doom and gloom prediction?

I was thinking the same thing.  I was also thinking about the blood pressure issue.  Let me talk about hypertension and high blood pressure for a moment...

It seem that over the last 6-9  months I have developed hypertension.  My doctor had brought up that if it did not improve that he wanted to put me on blood pressure meds.   I question if this was a side effect of my HIV medication.  I typically have always had what is considered a lower "low BP" 100/60 was common.

Here is the other side of this issues.  I am now 42 and there is a family history of high BP on my mother side if the family.  So what does this all mean... the one thing that came up in this conversation it that I have not been doing my cardiovascular workout like I had been doing in the past.  I use to get in a cardio workout 2-3 times a week for 40 mins or so. 

Instead of blaming the HIV meds we first started to look at other natural aging issues in my case and family history, diet, and exercise.   I think sometimes we forget to look at other parts our lives and what impact they may have on our health that is unrelated to HIV.  I think sometimes people feel it easier to pop a pill to solve an issue and don't look at changing behavior first.  Such as exercise and diet. 


"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Offline mikeyb39

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  • Posts: 922
Re: Decision Time Already?
« Reply #11 on: April 24, 2014, 12:41:27 PM »
One thing you have to look at concerning meds Is getting your viral load to UD.  You may have good CD4 numbers and no symptoms, but the virus still causes a lot of inflammation, which is not good especially on your nerves, your heart and etc.

so that would be one good reason to start I suppose. 
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline BKKKevin

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  • Posts: 42
Re: Decision Time Already?
« Reply #12 on: April 24, 2014, 02:57:59 PM »
I am new to the forum (just been lurking)… I was newly diagnosed April 7… My CD4 is 884 and viral load 88,000… My doctor said I could be fine for 3-5 years before my levels could become an issue that needed medication… But he recommended I start now… I agreed totally and will start Complera on May 1 when my ObamaCare kicks in…

To me it was choice of mind set…

I did not want to sign up for 3-5 years of quarterly knuckle sweating viral load tests where a small drop or blip sent me into a depression or a flu sends me running to my doctor for tests… Just too many unknowns and negative energy… This stress to me would be just as debilitating as any physical drug side effect...

I prefer to start now while I can deal with any drug side effects in perfect health. In the future if health issues pop up I will hope to have a positive history of dozens of tests where it says Viral Load Undetectable…

I prefer to stand and fight while I am at the top of the hill… Not from the bottom looking up at where I was at before…
« Last Edit: April 24, 2014, 03:19:31 PM by BKKKevin »

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Decision Time Already?
« Reply #13 on: April 24, 2014, 04:59:50 PM »
The rationale for test and treat is very reasonable

For example if you 'think' that you have been infected not too long ago, say < 2 years: this is called Early treatment

If, like the OP, Kardean, one has been infected more than 6 years ago, trying to win the race against the establishment of latency is pure illusion. Starting meds for a patient who is CHRONIC (several years) and is CD4 High is NOT called early treatment. This should be called HIGH start and not EARLY start

IMHO, early start and High start are 2 different things and people can get confused easily

Early start (at whatever CD4 value) may, possibly, make some sense, if you think that reservoir reduction will give you some benefits.

Yet, for all patients at CD4 500+ the following should be clarified: (*)

- If I make the free will decision to go on meds (knowing that it is not a life and death issue) and if I want (feel like) to stop
is this acceptable YES or NO

My doctor said YES and every one is kindly invited to discuss this with their own Doctor: your Doc is a paid professional: it is OK to corner a bit to get trustable answers. You can even post your question on theBody.com

If your Doctor says NO, I believe this NO will be an important factor in weighting the pros and cons

If you doctor says YES, then... Since you know that each molecule will differ by their Half life, Volume of Distribution, and Barrier to resistance, you can easily conclude that each combo has a different STOP procedure. If you doctor is not able or not willing to explain the procedure that he/she believes would be appropriate before you board the ship, then you may want to reconsider boarding

In the same fashion that they teach you the emergency procedure when boarding an airplane, they should teach you what to do if some thing goes wrong (especially since things may go wrong at the wrong time) and avoid things like this:

http://forums.poz.com/index.php?topic=53662.0

which I call criminal

In the same fashion that you find a life jacket under your seat, if pills (that are not on the script) are needed for the Stop procedure that your Doc think is appropriate, then you should get these pills before you start

If you don't , it is pretty much like boarding an intercontinental flight knowing that safety procedure are neglected

Before boarding, I think it is not unreasonnable to ask, beforehand, if you can deplane (**)

Eric

(*) this is what I personally think for patients who are way above the level of intervention that the UK's NHS applies. If you are an AIDS patient or CD4 < 250 or even 350, please disregard this, most likely your doctor's answer will be NO

(**) once you start, you should do your best until your are UD, then you can reassess.


NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0

Offline Kardean

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  • Posts: 45
Re: Decision Time Already?
« Reply #14 on: April 24, 2014, 07:07:54 PM »
  There are some longer term folks here that can give more personal experience on that point.  Related to that point, it isn't just the numbers but also the trends - how have your numbers (%CD4 too) been trending?


Also, a belated welcome to the forums,
best,jm


Thanks JM....   My CD4 trend has been slowly but consistently declining.  However, my percentage has always been high and even my doctor can't understand it.  Started at a CD4 1297 / 48% and latest is at 784 / 56%  Now what is a person to think about a trend like this???   For a while we thought maybe I was going to be one of those non-progressors, but with the CD4 trend I'd say maybe slow one at best.  My viral load has always been under 28,500 with some small flucuations. 

Offline Kardean

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Re: Decision Time Already?
« Reply #15 on: April 24, 2014, 07:11:56 PM »
have you experienced these symptoms? or is this a fear?

Yes Zach I have.  I'm really not all that creative.  I probably should clarify the Myalgia because that is what I call it, but my doctor thinks it more like neuroupathy.

Offline Jmarksto

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  • Posts: 474
Re: Decision Time Already?
« Reply #16 on: April 24, 2014, 07:43:38 PM »
I am with mecch, Zach,and BKKKevin on this one, if it were me I wouldn't hesitate to start unless there were other reasons to wait (ie. financial, adherence, etc.).  Keep us posted on your decision and how things go either way.
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline Kardean

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  • Posts: 45
Re: Decision Time Already?
« Reply #17 on: April 24, 2014, 09:22:04 PM »
Thanks everyone who replied to my post.  A variety of thoughts and opinions for sure, but certainly all welcomed.  I’m weighing each and everyone one of them and I really do appreciate them very much.

One decision I’ve made today is that I need to fire my ID.   I have Jmarksto comment, “if your doctor is recommending meds, and you trust him/her, that is a pretty strong factor in my eyes”, to thank for that.

My ID and I never did click and I felt stuck with him since he is the only ID near where I live and that is already a 2+ hour trip.  I don’t even think hiv consists much of his practice since even in the title of his office is “Wound & Infusion Clinic”.  He does have an hiv med chart in the examining rooms however.  All he does when I go is review my labs, listens to my heart and lungs and gropes my ankle (for some odd reason), and makes sure I have my flu and pneumonia shots.  Any health related issues I bring up he either ignores as insignificant or attributes to hiv just like many of us have done or still do.  Just like these “constitutional symptoms”…. When you think about it, it could be related to hiv chronic inflammation or be totally un-related.  HELL, I could have cancer (not that it would be anymore welcomed), but the point being is that because I’m hiv infected nothing goes any further with my medical care it seems.

I just need to suck it up and drive another 2 hours to the city and get established at the university clinic, especially if I decide to start ART.  Maybe I can just make like a mini-vacation out of the trips.  Hopefully I can keep them at a minimum.  I will keep you posted.

Offline emeraldize

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Re: Decision Time Already?
« Reply #18 on: April 24, 2014, 11:35:12 PM »
Hi Kardean

Before you fire your doc and lengthen your journey to a new one, may I suggest you be a little more assertive and inquisitive? Whether you stay or leave, you would benefit from driving the bus a bit more on your behalf.

Why not ask why he grabs your ankle? You will learn and he then sees you're interested. And he 's gonna show you whether he 's responsive or agitated.
He is likely getting a posterior tibial pulse and/or checking for edema--but it's best for you to learn from him.

I always make a list of any questions I have. I'm respectful of their time ( no matter what kind of doc I consult ) but I also walk out with answers.

Regarding initiating treatment, I started 7 years after diagnosis and given a chance to do it again, with knowledge about inflammation more broadly known and my ego set aside--I would start as soon as possible/feasible.

I appreciate your fact gathering period. You'll figure it all out--just don't be shy about enlisting any doc's insight. It is one way to determine if the relationship will work.


Offline Jmarksto

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  • Posts: 474
Re: Decision Time Already?
« Reply #19 on: April 25, 2014, 12:46:22 AM »
Kardean; 

Emerald makes some very good points - perhaps its worth getting a second opinion from another doc on when to start meds, but engaging more with your current doc to better develop the relationship.  At the end of the day it really does help to trust your doc and all relationships take work on both sides. 

Also - your original question was about meds creating their own "constitutional symptoms", did that question get answered for you?  If not, can you be more specific about what concerns you have about the meds?

Best, JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline Kardean

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Re: Decision Time Already?
« Reply #20 on: April 25, 2014, 11:46:16 AM »
Kardean; 

Emerald makes some very good points - perhaps its worth getting a second opinion from another doc on when to start meds, but engaging more with your current doc to better develop the relationship.  At the end of the day it really does help to trust your doc and all relationships take work on both sides. 

Also - your original question was about meds creating their own "constitutional symptoms", did that question get answered for you?  If not, can you be more specific about what concerns you have about the meds?

Best, JM

In regards to yours and Emerald’s suggestions,  I actually was more assertive with my doctor in the beginning, so much so that it may be the reason it is the way it is.  You see, when I tested positive, I went into a very dark place.  It wasn’t until 9 months that I even sought medical care.   I immediately sensed his docile demeanor and approach towards my infection and concerns.  At some point I found myself literally having him backed into the corner unloading on him.  Maybe I didn’t handle it the best way but ever since then I think the mutual respect/trust issues went out the window.  I would prefer a doctor who is as aggressive as me as long as he explains, stands and proves his position.

No, I never got any answers about the constitutional symptoms improving with the use of ART from either the doc or here.  However, we all know that they have their own mixed bag of side effects and the toxicity alone can create other health issues.  Therefore it seems like a trade-off so to speak.  For example, if his Dx of neuropathy due to chronic viral infection is true, well the same condition can occur under ART.  I guess it comes down in mind as to whether my current symptoms are bothersome enough to start treatment and to be honest (in my opinion) they are not.  Of course I don’t want them to get worse either!

So with that said, I guess one of my concerns is to what degree do I risk taking the treatment route which may or may not change any of my current symptoms for perhaps others.  Besides, I don’t even know for sure that what is going on with me currently is even for certain HIV related.  I’m no spring chicken here (57 y.o.) and as AAWARE72 commented…. “other natural aging issues” or even some other sort of illnesses.  However, my current ID doesn’t seem to want to look elsewhere.  Maybe they can’t be definitively identified, I don’t know.

I think a big part of my fear is more like a feeling of disillusion.  By this I mean when I got my first labs with very high numbers and a trend was established, I felt relieved that I could avoid the complications of ART.  I decided back then not to begin treatment until I hit the 500 range and calculated that to be around age 60.  After all, isn’t the treatment goal to keep ones immunity intact?  Mine certainly has shown it has been and I have been doing well so why fix something that aint broke so to speak.

Bottom line I guess on switching doctors is this.... After nearly 6 years with my current provider, if the relationship hasn’t changed, it isn’t going to.  And, regardless if I start treatment now or at my perceived point, it is best to get established somewhere I feel more confident.

Again I thank each and every one of you and your input.   You have no idea how much it helps me.

Offline Kardean

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Re: Decision Time Already?
« Reply #21 on: April 28, 2014, 04:16:23 PM »
So I made the plunge today and called the university clinic.  They told me it would be 2 months before I'd get in to see a doctor.  Geesch... I'm glad I still got some extra Tcells !!!   Anyway, they are sending a bunch of paperwork for me to complete and once they get it back and my medical records they will send lab slips.  Fortunately they said I can have them done here at local hospital.

This clinic has 5 ID's and I was told that even though I'd be assigned a primarty MD, I would may be seen by any of the "team".  I kind of have mixed feelings about that.  On one hand there is something to be said about the extra resources, but on the other hand if they are not on the same page, or there are just some "connection" issues... that wouldn't be pleasant or productive.

Ok, just wanted to update.  By the way, should I give my current ID a heads up or just let it go?  I'm thinking he will get the message when he gets his paperwork.

Offline mecch

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  • red pill? or blue pill?
Re: Decision Time Already?
« Reply #22 on: April 28, 2014, 06:03:39 PM »

I think a big part of my fear is more like a feeling of disillusion.  By this I mean when I got my first labs with very high numbers and a trend was established, I felt relieved that I could avoid the complications of ART.  I decided back then not to begin treatment until I hit the 500 range and calculated that to be around age 60.  After all, isn’t the treatment goal to keep ones immunity intact?  Mine certainly has shown it has been and I have been doing well so why fix something that aint broke so to speak.

Bottom line I guess on switching doctors is this.... After nearly 6 years with my current provider, if the relationship hasn’t changed, it isn’t going to.  And, regardless if I start treatment now or at my perceived point, it is best to get established somewhere I feel more confident.

Again I thank each and every one of you and your input.   You have no idea how much it helps me.

Disillusion with expectations formed quite a while ago, based on a vision and knowledge of HIV treatment that is rather dated. Things have evolved. 

Also, disillusion is NOT the same as fear of starting. 

In fact, you are both disillusioned that what expected may, perhaps, no longer be maintained. 

AND you are a bit overly concerned about HAART "toxicity".   My gut feeling, just a hunch cause obviously I don't know you, is that you're a bit behind the times here. 

You say: "isn’t the treatment goal to keep ones immunity intact?"  and yes. (And you are  not on it, so... why not?) First of all, your body is working hard to keep those levels. Also, inflammation. But also, all CD4 counts are not the same.  You could keep a "safe" level of CD4 and still lose a lot of diversity in the kinds of cells you have.  If there are, for example, ABCDEFGHIJKLetc varieties of CD4 - HIV infection knocks out some varieties, forever.  The body multiplies the remaining varieties, if possible, to keep CD4 as high as possible.

Secondly, you ignore that one of the goals of HIV treatment is to stop replication! Lock it down as near zero as possible.  You are not getting treated, so you are missing out on a great benefit of HIV Treatment. 

You have an active infection. Your numbers are ok but who knows the delicate balance that is going on in your body, you certainly don't feel ok. Also, ageing.... 

I do think you are overly fearful of HIV medicine and I do think you need a change of mind set.  Perhaps hearing opinions from another doctor, or two, would help you feel at ease with whatever choice you do make so if I were you I would push to get consultation(s) a.s.a.p. so you can move through this uncertainty. Anxiety is not helping the body situation. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Kardean

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Re: Decision Time Already?
« Reply #23 on: April 28, 2014, 06:37:47 PM »
WOW.... Now that was a SPANKING.  Normally I might wouldn't of mind such, but was feeling pretty good that I initiated higher quality medical care today.

Offline mecch

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Re: Decision Time Already?
« Reply #24 on: April 28, 2014, 09:09:09 PM »
Just offering a different perspective - take what you feel is constructive. I think its great you are shaking things up and looking for a second opinion!  Little word choices here or there, or reading between the lines, it was just my feeling that you are afraid of HIV medicine. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Kardean

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Re: Decision Time Already?
« Reply #25 on: June 26, 2014, 01:34:32 PM »
UPDATE:  Well I had my first appointment at the university clinic yesterday and all I can say is WOW!

First off, I received more attention in this appointment than in the combined nearly six years of previous medical care.  However, I’m not sure it is all going to turn out for the good.  It seems that my assigned ID thinks that my current labs, my medical history and physical presentations are not adding up so to speak.  He says I could be a “very unique case”.  I’m like when did hiv ever not be unique?  He went out of the room and brought in another doctor who asked questions and examined me.  And then another one came in and did the same thing.  I started feeling like an exhibitionist and felt like freaking out.

After 45 minutes of this visit, the doctor starts to rattle off all these tests he wants to have done.  I started losing track and became cognitive impaired when insurance and dollar signs began flashing before my eyes.  What I do remember is that there will be a scope (both ends), xrays and other imaging tests, cystoscopy, sub-lingual lymph node biopsy, protein blood work since I’m showing loss of it in urine test, a bunch more blood tests one that measures or sets inflammation markers (or something like that) and a total lymphocyte panel.

They are going to try and coordinate all this testing to be done over a 2 day period at the hospital because of the distance I must travel.  That would be nice but I will just get a hotel room nearby for the night.  As for my financial concerns I was told by the PA that they will deal with my insurance and not to worry about any of it.

So on the long drive back home all I did was think and re-hash the visit which about put me into a panic attack.  Although the extensive attention was appreciated it became scary at least in my mind.  It’s like they are suspicious of more than just hiv related issues possibly going on.  I’m trying to remain calm but something is telling me to get prepared.  Here I thought and was prepared to talk about starting treatment.  It was never brought up and when I asked he said he wanted to wait till after all tests were back before discussing treatment options.

Well that’s about it in a nutshell.  Wish me luck!!!

Offline mecch

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Re: Decision Time Already?
« Reply #26 on: June 26, 2014, 02:09:38 PM »
Good luck!
Its not very nice or agreeable that you are in the dark and thinking these scary thoughts.  They should have said what they are looking for. And I wonder why you didn't tell them, that all the attention was worrying you and would they mind clarifying it?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Kardean

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Re: Decision Time Already?
« Reply #27 on: June 26, 2014, 04:30:54 PM »
Thanks Mecch

Well the worrying didn't really begin until on the drive back home as I mentioned.  I've always been to much of a thinker as I've always been told, but the older I get the slower a thinker I've become. 

I really don't know if they know what they are looking for other than perhaps some answers as to why my latest labs are not indicative of my physical presentations.  I'm assuming they are more or less ruling things out rather than looking for something to weed it all out so to speak which I realize now that is as it should be.  To often I've gotten pissed with the attitude that everything is because you have hiv.  With this clinic it seems at least they are willing to look beyond.  Anyhow I'd have to assume cancers are probably something they might be considering.  I came across an article a while back that eluded to high cd4% in discordance with T-cells are seen in various cancers.  That is one of the lab markers that this new ID is scratching is head over just as I've been for the past year.

I also remembered since I posted, a few tests he wants to do.... Electromyogram and Bone Density.

Offline tryingtostay

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Re: Decision Time Already?
« Reply #28 on: June 27, 2014, 01:22:04 AM »
Sorry if this was mentioned before, or in another post, but what were your numbers when you were dx'd?

Thanks, and good luck!
Labs:
March 2014: CD4 1730 @ 41%, VL 87 without meds
May 2014: CD4 1309 @ 42%, VL <20 without meds

Offline Kardean

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Re: Decision Time Already?
« Reply #29 on: August 07, 2014, 10:39:39 PM »
I'm not sure why I'm updating my post because of the lack of interest it has received, other than I've always been a person that disliked unfinished business.

I had my followup appt. with the new ID to go over what I now call my "antemortem" results from several tests over several days at the university hospital.  The postmortem will be following soon.

Again, for the lack of interest I will spare the details.  I never knew that one person could have so many diseases.  The only good things were my cholesterol and BP.

Anyway.... I sincerely wish everyone here great health and success with your journey, and would like to remind those "worriers" like myself that most of the time we worry about the things that really never do happen.  That is why all day the infamous Forrest Gump quote, "Life was like a box of chocolates. You never know what you're gonna get", keeps chiming in my head.

God Bless each and everyone of you.

Offline mecch

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Re: Decision Time Already?
« Reply #30 on: August 08, 2014, 12:20:45 AM »
What diseases do you have besides HIV?
So any movement on starting the HAART for the HIV disease?
It was rotten you had to wait well over 2 months finally, for this new round of visits...
:(
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online zach

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Re: Decision Time Already?
« Reply #31 on: August 08, 2014, 01:23:48 AM »
whats with the lack of interest comments?

Offline Jeff G

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Re: Decision Time Already?
« Reply #32 on: August 08, 2014, 09:21:19 AM »
I think one reason no one commented too much was that you didn't ask any questions and it was more like venting, and then you never responded to the questions people asked . I read your post and wished you luck if it makes ya feel better .

Offline wolfter

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Re: Decision Time Already?
« Reply #33 on: August 08, 2014, 09:43:07 AM »
Sorry you feel that no one is interested in situation.  I won't speak on behalf of all LTS, but after a couple of decades +, fear of starting meds threads simply tire me out.  I don't and probably never will understand the fear and mindset.  Therefore, I "recuse" myself from posting.

I wasn't sure what other concerns this thread expressed.  Asking specific questions/concerns might garner more responses.  I too thought this was more of a rant thread.

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

 


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