Author Topic: Jitters (Read 8310 times)

Queen Tokelove · « **on:** December 05, 2006, 10:29:42 pm »

Hey Everyone,

I have a doctor's appointment tomorrow and I am a bit nervous. When I went in September, I was told that my HDLs were too low. It was suggested that I start fish oil pills which I did do along with switching things in my diet. I am hoping that the changes will show when I get the results of my bloodwork.

Depending on what my counts are for my cd4 and viral load, I feel I am ready to start meds. In September, my cd4 was 372 which was a slight improvement from 345. My viral load was 13865 an improvement from 20000. Before I had decided that I wasn't gonna start meds until I got down to 200 but was told that was a bit low to start. When I got my bloodwork done on Monday, I had told the nurse that I thought I was ready to start, she had told me that the new guidelines states that meds should be started when the cd4 drops to 300 or 250 the lowest. If my cd4 is not 300 but better, shouldn't it be up to me when I want to start? The nurse says the doctor is not going to want to start me if they are better. I do not understand why not? I do not want to wait til things start hitting the fan then my body has to fight twice the fight, ya know? Fighting the virus and fighting the side effects of the meds is what I mean by this.

I am also diabetic, so the hiv and the diabetes often clash with each other. Do you guys just think it is pre appointment jitters? I often tend to think the worse when it comes to I.D. doc appointments, so yes, I do have my moments of negative thinking too but I try not to dwell on it.

Longislander · « **Reply #1 on:** December 05, 2006, 10:59:04 pm »

I hope the # 's all get better for you. If you think you're mentally ready to start, you should have a real sit down with the doctor about it, no matter what your #'s. Several in here have started with higher #'s than yours, all with good reasoning.

Boo Radley · « **Reply #2 on:** December 05, 2006, 11:47:54 pm »

Queen A,

The CDC guidelines for initiating HAART were revised a few years ago to reflect a better understanding of the "standard" immune response to HIV. If your CD4 is at or above above 350 and your viral load is below 100,000 it is your option as to whether to start treatment or not. Obviously the major concern with initiating HAART is adherence (maybe a drug resistance test might help before taking the HAART leap but few of us seem to be given that option by our doctors) since it's been substantiated that one must adhere to the dosage instructions for HAART to be effective.

There are still some who say you should start HAART now with your present status but I'm not one of them. I lasted for 10 years floating by on a CD4 in the 500 range and a viral load that never exceeded 30,000 before I took the HAART plunge when my CD4 count was about 160 (I didn't intentionally let it get that low but skipped getting labs done for about 6 - 9 months) in late 2004.

No matter how you look at it the current HAART regimens are chemotherapy. There isn't another disease for which those afflicted are expected to go through chemotherapy for longer than a year at most (OK, maybe 2 years max) so I have always been an advocate of waiting to initiate HAART until it was necessary. I may be wrong (time will tell) and even though it's been almost 6 months since my last labs were done (procrastinate is my middle name) I'm still in good health and have no signs that my immune system is in trouble or failing.

If you are experiencing symptoms like thrush or shingles or anything comparable you might consider HAART now. Otherwise I advise you to wait until your lab results are close to those from the CDC guidelines.

Regardless of what you decide, best of luck to ye, me lassy.

Boo,
the old Scottish fart

Queen Tokelove · « **Reply #3 on:** December 06, 2006, 12:05:18 am »

Boo,

Thanks for the input. I'm not having any symptoms right now except thrush from time to time, not sure if it is caused from the hiv or diabetes. The highest my vl has ever been was 71,000 which was last year sometime and right now 345 has been the lowest my cd4 has ever been. This is going on 9 yrs w/o meds.

LongIslander,

I am going to have a sit down with my doc tomorrow for sure. I will wait to see what my numbers reflect. If they have dropped any lower, the cd4 that is then I will ask that I get started with the Atripla/Abacavir. If they do even better than before (372) then I will wait.

I will keep you both posted.....

ChrisNCoronado · « **Reply #4 on:** December 06, 2006, 10:19:27 am »

Queen -

I'm a little late to this thread; you are most likely already at (or on your way) to the doctor as I type this.

No need for me to rehash what the guys stated, above; just wanted to express my concern for you. I'll keep you in my thoughts today.

Best to you -

Chris

aztecan · « **Reply #5 on:** December 06, 2006, 10:55:42 am »

Hey Akasha,
I started my meds when my CD4 hit 430. Back then the cut-off was 500, so it was time.

From what your numbers show, you still have wiggle room, so to speak. I disagree with Boo on one point regarding waiting to start meds until you already are experiencing OIs.

The idea behind the meds isn't to reconstruct an immune system, it is to preserve it. When your numbers are good, your body is keeping things under control. When your CD4s drop to 350 or below, it is time to give your body some help.

Or, at least, that is my opinion.

I went at least 11 years without meds before taking the plunge. But that was me. Others have found themselves needing to begin within a year of infection.

It boils down to what you want to do and what you are ready to do. I hope your talk with your doc is productive.

Oh, and getting the jitters before seeing the doc is normal for me. Even after all these years, I still get a case of the "what ifs" when my time comes. I am scheduled for more labs sometime this month, whenever I can force myself to do the 12-hour fast. These will be my first labs since May.

I always wonder if this time will be "the" time when the other shoe falls. One never knows.

Silly, isn't it. After nearly 22 years you would think I would be over it.

Let us know what comes of the visit.

BIG HUGS,

Mark

MSPspud · « **Reply #6 on:** December 06, 2006, 11:05:48 am »

Queen - Please let us know how your appointment went when you get back. Just for the record, I'd be more inclined to start treatment sooner then later. I'd also just do a regimen with Atripla and not include Abacavir because there is no evidence that a 4 drug combo with an extra NRTI is necessarily more effective. Infact there's been higher rates of failure when the Tenofovir in Atripla and Abacavir is used in combo for unknown reasons.

Queen Tokelove · « **Reply #7 on:** December 06, 2006, 06:51:23 pm »

Thanks for your posts....Here is the update....

I guess you can say the appointment was kinda disappointing, depends how you look at it. First off, my ass shows up an hour early. I was going to go home and come back since the clinic is just around the corner from where I live. But they asked me to stay and they would try to squeeze me in...What was I thinking? I didn't get to see the doctor til almost 3:45, which one of the nurses commented on how chatty the doctor was today.

Since I had just gotten my bloodwork done this past Monday, the viral load was not in yet but my cd4s took a dive. In September it was 372, today it was 307, but my percentage remained the same. I believe he said it was at 21%. He does not want to start me on the Atripla/Abacavir for a few reasons. 1). He does not have the viral load results to see where they are, in Sept. they were 13865. 2) He wants to wait and do a few more draws to see where things go with my cd4/viral load. 3) My diabetes is running wild and he wants my primary to try to get it under control before starting meds because something in the meds will cause my diabetes to spike.

I know some will prolly trip about this but I was so disappointed by not being able to start the meds that I was almost close to tears when he said he didn't think I was ready. I guess I got myself too psyched to take them. Crazy, right? My chloresterol, HDLs got a little better but he asked if I was taking the fish oil tabs which I am so he told me to start taking 2 instead of one. If that doesn't get better by the draws then he suggested my primary start me on medication for that...Fucking Great..As I have said before, it seems like the diabetes is kicking my ass more than the hiv, go figure..I just feel so disappointed because I had started making changes in my diet and no good results...Maybe it will just take a lil more time.....*sighs* Then on top of all that, I had to get another Hep B shot, this is about the 6th time, finally the Hep A took and I had that one a few times too. I also had to get a T.B. test too...On the bright side, I'm still among the living........

Longislander · « **Reply #8 on:** December 06, 2006, 07:04:37 pm »

Hi sweety,

I'm sorry your appt didn't go as you wanted it to. You did say that your chol. and HDL improved, so you're on the right road. Maybe a few extra walks around the park or something will help the #'s before the next draw.

Your doctor seems to have taken all your health issues into consideration here. Listen to him for a short while.

I'm glad you were able to psyche yourself up about the meds, but you're not ready yet. I hope I can , too, when its my turn!

Don't be too disheartened by todays appt.. Stay on that diet/exercise program, take 2 fishies instead of one, and kick the diabetes in the butt next time!

(((((( MICHELLE ))))))
BIGHUGS for you,
Paul

Queen Tokelove · « **Reply #9 on:** December 06, 2006, 07:11:26 pm »

Thanks a bunch Paul....

AtomicA · « **Reply #10 on:** December 06, 2006, 11:09:17 pm »

Queen, I read alot of your posts and I must say it makes me sad to hear you go through such a dissapointing day. I use to do the same thing, my CD4's only went above 400 once in the entire year and a half between diagnosis and starting meds and everytime I had an appointment I'd get all psyched up and say "today, I am going to DEMAND the drugs", only to have my doctor refuse... though refuse by talking me out of it. It was pretty disheartening to feel that out of control of things.

I just hope that when the time really does come, it comes because you have decided it's come. I know I can speak for everyone here that we're all thinking about you and wishing the best.

Adam

MSPspud · « **Reply #11 on:** December 06, 2006, 11:52:37 pm »

Hi Queen, please forgive me for sounding like Bush, but stay the course with the fish oils. They are good for a lot more than just cholesterol. Consider taking them on an empty stomach about 20 to 30 minutes before a meal. I don't know the exact source of where I heard this but it was probably from my mother who's a dietitian. For some reason they absorb much better if taken this way.

I also know what it's like to play the waiting game with meds. For some reason it's more nerve racking then when you're on them. The best thing to do is not worry though. As long as you go in for your regular checkups and keep an eye on things you should be fine.

There is one really big upside to waiting. The new Merck integrase inhibitor that's coming out this next year should control the virus nicely without raising your cholesterol. I'm not sure how it is on the diabetes but I'd bet it's with less side effects. Who knows, perhaps your doctor is being a little more strategic than he's letting on.

aztecan · « **Reply #12 on:** December 07, 2006, 01:46:36 am »

Hey Akasha,
I knew your diabetes was being difficult, but given what you relayed after the doctor visit, you're doctor seems to have a good view of your entire health picture.

I don't know much about diabetes, but I hope you and your doc can get things under control.

As far as the fish oil goes, keep it up. I take four 1,000 mg capsules each day. It has other benefits aside from addressing cholesterol and triglycerides.

Keep us posted on how things go.

HUGS,

Mark

AtomicA · « **Reply #13 on:** December 07, 2006, 02:01:46 am »

I don't want to hijack this thread, but I'm totally naive on fish oil... why do people take it? what are it's other benefits? would someone like me find benefit in it?

Queen Tokelove · « **Reply #14 on:** December 07, 2006, 02:20:30 am »

Not hijacking Atomic but I would like to know too what are the other benefits for taking them. I also didn't know you had to take them on an empty stomach, so maybe that was why my hdls only moved slightly.

MSPspud,

Yeah, I'm not going to worry about the meds since my doc gave me the reasons why. I will wait to see what my viral load is on Friday and go get the extra draws. I alway go to my appointments, I never miss them, I would need my ass kicked if I did since the clinic is right around the corner from where I live.

Really nothing else to report, I don't go back to the I.D. doc til March now with 2 blood draws to be taken before I see him again. I do have to schedule an appointment with my primary doc now but one he gets the report from my I.D. doc, he will probably be calling me.

Thanks for your concern everyone, it's nice to be able to talk to people about my results because there is no one here I can talk to about it.

Queen Tokelove · « **Reply #15 on:** December 07, 2006, 03:48:31 am »

Atomic,

check out this link on fish oils...

http://www.healthydirect.co.uk/pages/cm/cm_artDetail.asp?sCCPage=Omega3EssentialFatsofLife&cookie%5Ftest=1

AtomicA · « **Reply #16 on:** December 07, 2006, 08:18:08 pm »

Thanks Queen!

and ps, that avatar you've got up now is making me moist!

Queen Tokelove · « **Reply #17 on:** December 08, 2006, 01:52:25 am »

Atomic,

No problem, sweetheart. Many seem to like my avatars but wait til you get a load of me....j/k..Well, I don't think I'm hard on the eyes but as they say beauty is in the eye of the beholder....

(who wishes someone was holding me right now $:-\$ )

Queen Tokelove · « **Reply #18 on:** December 08, 2006, 02:42:04 pm »

OK folks, here is the latest, tell me what you think...My cd4 is 307, just found out today that my viral load is now 85,000, it was 13,865 in September and my percentage is 21 % which the nurse has told it went down by 1. Is this good?

AtomicA · « **Reply #19 on:** December 08, 2006, 03:10:09 pm »

CD4's down and VL up aren't really ever good I don't think, however, since my doctor is always reminding me that what really counts is the percentage, a drop by 1% isn't really all that bad either! given the rate at which HIV is created and destroyed, having a jump like that in your viral load isn't really all that telling... it goes up and down a whole lot.

Has the doctor ever suggested a link between the diabetes and the HIV numbers? I know that one is not caused by the other, but as my chinese herbalist friend is always telling me, the body needs to be looked at as a total system, not just a collection of unrelated parts. Have you ever noticed that when the diabetes is giving you the most trouble that your numbers are also the most troubling? maybe once one is under control the other will follow suit. I don't know if that's how it works, I just hope that you are ok with how things are going.

Adam

Queen Tokelove · « **Reply #20 on:** December 08, 2006, 03:47:41 pm »

Atomic,

In September, my diabetes was still running wild but the virus, I thought was doing good, in September my diabetes count was 232, so it kinda did better. I had a H1Ac done which monitors the blood sugar over the last few months before it was 6 and now it is 9, which ID doc says is a lil high, it should be below 6..I never understand the medical jargon. My vl is the highest now it has ever been. It's just confusing as hell to me.

AtomicA · « **Reply #21 on:** December 08, 2006, 05:01:09 pm »

Well then I think you should be the one who makes the decision. Medical jargon aside, doctors have a hard time seeing past the numbers to how these things affect your mind. If your doctor was waiting to see the VL numbers... well being as high as they've ever been should be a pretty good reason to listen to what you want to do. Make another appointment and if he/she won't listen to you, find someone who will! If you think it's the right time to start the drugs then you're probably right... I know that had my stepmom listened to everything the doctors told her, she probably would have fulfilled the 6-month prognosis when she found out she had cancer. She took things into her own hands (finding a doctor that listened to her and becoming more involved in treatment decisions) and she lived for 6 years. My mom was told 25 years ago that she had chronic progressive MS, that she had 10 years to live and would be a vegetable for 5 of them. She told them to fuck off, hit the gym, changed her diet, lost 90 pounds and started an aggressive vitamin/probiotic supplementation regimen and not only is she still alive, she's still walking - albeit slowly and with a limp, but she gets there! You are the only person who truly knows your body and so you should be the only person who decides what happens to it.

Catman · « **Reply #22 on:** December 09, 2006, 05:11:07 pm »

Hi Queen:
I really can't give you much advise on when to start meds because I don't even remember what my doctor took into consideration when he began my cocktail and that was 20 years ago. I do remember me being sick with pneumonia and my vl was at 135,000. The highest, ever. After starting with my meds they always maintained themselves below 20,000. I have a feeling that your viral load will be controlled once beginning on your meds. But, the diabetes is more of a pain in the ass. I agree with your doctor on getting that in control before anything else. I'm with you and want you to know that you have my support during this time when confusion and doubt are bugging your tranquility. Keep us posted on this topic, dear. Hugs for you...

That avatar is so mysterious...it reminds me of the movie "Interview with the Vampire".

I love the dim lighting. How was that achieved. You can answer in a personal email if you wish.

RAB · « **Reply #23 on:** December 09, 2006, 07:32:30 pm »

Hey Gorgeous!

Let me qualify what I am going to suggest with two things:

1. I don't know anything about diabetes or what impact it may have on you possibly beginning HAART.

2. I am a strong believer in being aggressive. Others have a different attitude. There is no right or wrong, whatever you and your doctor decide will be the right choice.

O.K. having said that here is what I would suggest:

1. It's not a good idea to make a decision to begin HAART based upon one set of labs. We always want to try and see a trend over at least 3 sets of labs.

2. Considering the most recent results, what I would do is have labs done again in 30 days, instead of waiting 3 months. I say this because if the next results indicate what the last one's are showing then in my opinion (remembering I know nothing about diabetes) it is certainly time to begin HAART. A CD4 of 307 does not indicate any immediate threat, but you certainly don't want to slip much farther, IMHO. Coupled with the VL of 87,000, both those numbers would motivate me to want to start. As I said, I'm a firm believer in being aggressive. The last thing you want to do is let things get to a crisis, because then you are facing a bigger challenge.

3. Assuming you redo the labs in 30 days, and depending upon their outcome, I would sit down with your doctor and express to him in a very calm and logical manner why it is you feel it is time. He/she may be concerned about your commitment (cause remember adherence is crucial), but if you explain your reasoning, (and again this all is depending on how the darn diabetes comes into play), my guess is the two of you will be able to come to an agreement and move forward as partners in your health care.

So don't panic or get stressed. Just take the information the last labs showed (as you have done already) and use it to your advantage. But if it were me, I would want to retest in 30 days to see if the last results are confirmed before I do anything.

Hope this helps.

RAB

Boo Radley · « **Reply #24 on:** December 10, 2006, 03:27:10 pm »

Quote from: aztecan on December 06, 2006, 10:55:42 am

From what your numbers show, you still have wiggle room, so to speak. I disagree with Boo on one point regarding waiting to start meds until you already are experiencing OIs.

A belated but necessary re-statement of what I meant to say but said so ambiguously!

Don't wait for any OI before starting HAART. What I meant is that with your current numbers you don't need to rush into HAART. If, on the other hand, you had experienced any OIs (even one as "benign" as mild thrush) you might consider HAART sooner than later.

Like others I don't know enough about diabetes and how HIV complicates it and vice versa. It sounds like your doctor has a good grip on matters so maybe his/her advice is best.

Good luck, dear Queen!

Boo

Queen Tokelove · « **Reply #25 on:** December 10, 2006, 04:41:22 pm »

Quote from: Catman on December 09, 2006, 05:11:07 pm

That avatar is so mysterious...it reminds me of the movie "Interview with the Vampire". I love the dim lighting. How was that achieved. You can answer in a personal email if you wish.

Thanks Catman, I appreciate that. That happens to be one of my fave movies, I have read all of the vampire chronicles. Um, I just took the pic. I have 2 little lamps on each side of my bed, they both were on...

Longislander · « **Reply #26 on:** December 10, 2006, 04:53:09 pm »

and you are beautiful......

Eldon · « **Reply #27 on:** December 10, 2006, 08:45:41 pm »

Hey Queen...

I also must admit that you are gorgeous! As far as your meds are concerned, RAB was spot on with getting a test every 30 days to see what your numbers are doing and get at least (3) three sets of labs done first.

As for you Diabetes...You will definitely want to get that under control and discuss with your Doctor about the possible combo that you will be taking and the reactions that may be present with your Diabetes.

Take care of YOU hon.

Happy Holidays!

Queen Tokelove · « **Reply #28 on:** December 11, 2006, 01:10:31 am »

RAB,

The doc and I did have the talk. I don't see him til March now but am scheduled to get another draw in 5 weeks then another 2 weeks before I see him again. At the time of the visit, he did not have my vl results, and was going strictly by what my blood sugar was doing. I was shocked by the results of the sugar because I had not eaten or anything and thought it would be a bit lower. He has prolly sent the reults to my primary doc who handles all things not hiv related. I hope he does not try to put me on shots. I am already on 3 meds for my diabetes. I do not like needles at all..There's only one type of prick I want...

P.S. Thanks for the compliments, Eldon, Paul, and RAB..

DanielMark · « **Reply #29 on:** December 12, 2006, 06:19:23 am »

On the bright side, I'm still among the living

And that is the main thing isn't it.

I don't know much about living with Diabetes, but I can imagine your frustration over not beginning meds when you’re feeling ready. I say “imagine” because in my case there was no option. I was literally headed for death’s door after 14 years without any meds at all.

Patience is not easy to find some times Queen, but maybe that’s what will be required till your next doc visit. Hang in there.

Daniel

Queen Tokelove · « **Reply #30 on:** December 12, 2006, 06:41:38 am »

Thanks Daniel,

Patience has never been one of my strong suits. I have no choice but to wait, I am kinda dreading talking to my primary doc because he is prolly gonna try to get me to take insulin shots...ugh...

DanielMark · « **Reply #31 on:** December 12, 2006, 06:58:34 am »

Patience has never been one of my strong suits.

Nor mine, Queen. I think it's one of those buggers known as "learned behaviour" or something.

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Author Topic: Jitters (Read 8310 times)