CD4 Way Below 200 For The First Time

[Londonguy]

Oh man I had a good cry at the clinic today.  My CD4 has been hovering around 200 for months now (not on meds, they were waiting to see if it rebounded from syphilis), but today it was 147.  I had kinda expected it to be low because I've been feeling enormously tired recently, but it still hit me hard.  There's a big psychological difference to me between being over 200, even if just barely, and being under it.  Probably because of the official AIDS definition.  It scares the hell out of me to think I have AIDS now, it sounds so much scarier than HIV 

Anyway I have to go back on Thursday so I'm sure I'll be starting on meds now.  I wish so badly I had started meds last summer when my numbers were more respectable.  I'm also disappointed I've progressed to this stage less than 2 years after diagnosis.  It makes me worry my immune system isn't up to it or that I've got a nasty strain.

On the positive side, I have a very low viral load (8,000) so hopefully I should become undetectable pretty fast, and I have no resistance and my CD4% was kinda ok for such low numbers (19%).

I'm on Septrin, so I guess I want to ask if there's anything I should watch out for at this stage, if there's anything I can even do that is.  Obviously I'm susceptible to OI's but apart from taking the Septrin I guess I'm pretty helpless?

Also,I'm scared to death that because I'm starting meds at a low number, I may never fully recover.  When I was diagnosed my CD4 was about 520 and I was relieved I had caught it early because I thought I would then be able to start meds before majordamage had been done but that hasn't really happened.  Seeing as the growing consensus seems to be that it's better to hit it early, I feel very disheartened I'm hitting it so late.

[Ihavehope]

Hey there chap

Don't worry, you are on Septrim and you are not resistant to drugs, thats a fantastic start considering your numbers. I also wouldn't panic too much right now because your percentage is 19%. There are some docs who tend to follow the % pattern as an indication of AIDS diagnosis. Usually if it hits below 15% then they worry. It is definately time for meds, and once you start your meds you will hopefully feel better. My numbers are in the 200 very low 200's and by now I suspect I may have gone below and my % is 16 so my doctor told me I need to start meds ASAP. As a matter of fact I get my prescription today. It's normal to feel scared but just take your septrim, watch what you eat, wash your hands often and move on with life.

AL

[RapidRod]

Septrin is going to keep you from getting PCP and until you have an OI, you are not classified in the AIDS group. But like me I've been under 200 for almost two years and been on Bactrim DS the whole time wishing I could hurry up and get rid of that horse pill. You are right, it's pill time for you. Don't stress yourself over it.

[Queen Tokelove]

Hi there. I agree with what the others are saying. I know it may be a bit of a shocker to you right now. Do what you got to do to keep yourself well. It really amazes me to see how the virus affects us all so differently. I hope things get better for you.

[aztecan]

Hey London,

Yep, its pill time alright. But don't let it spook you.

You said,

I'm on Septrin, so I guess I want to ask if there's anything I should watch out for at this stage, if there's anything I can even do that is.  Obviously I'm susceptible to OI's but apart from taking the Septrin I guess I'm pretty helpless?

NO! You are not helpless.

Up until now, you have been allowing the virus to carry on with its business unchecked. Now, its time for a change.

When you start meds, you will be, in essence, saying, "Move over, there's a new boss in town."

You will be kicking viral ass, so to speak and not letting it decide you life.

You also can do things to help ensure you escape other potential problems. One way is to be careful with food.

You are still in OK shape, as others have noted. But you don't want to cause any downturns becaue you ingested something that made you sick.

So, make sure all meats, poultry, eggs and fish are cooked well done, all veggies and fruits are washed before eating or cooking, all dairy products are pasteurized (watch out for some cheeses too, they are made with raw milk), steer clear of soft-ripened cheese like Camembert, Roquefort, Brie, Bleu, etc., because of a specific contaminant sometimes found in them, and drink filtered or bottled water.

Also, if you drink/drug a lot, now is the time to start cutting back or stopping altogether. I don't mean a few glasses of wine, a few ale's or a drink or two during a week, but rather those who drink or drug daily. This can do a real number on your numbers.

Get plenty of rest, moderate exercise and try to keep stress to a minimum (I know, easier said than done.)

I just want you to know you aren't powerless. But the time has come for you to take charge and stop letting the virus run unchallenged.

As far as wishing you had started meds sooner, maybe that would have been better, maybe not. We'll never know. Were it me, I would begin looking ahead rather than behind, forget about lamentations of what might have been.

OK, I'll climb down off the soap box now. Just know that we'll, that I'll, be here for you if/when you are in need.

HUGS,

Mark

[AustinWesley]

Hey London,

While I'd agree with everyone here that it's time to start meds as soon as possible I can tell ya I now have met several people who were diagnosed initially with AIDS diagnoses.

One friend was in terrible shape and didn't even know he was HIV+.   They got him on meds and 9 years later he is undectable with good CD4 counts and he looks fantastic and his heath is fine.

I don't agree with defining HIV and AIDS by one CD4 point makes sense.   Nor do I agree that one AIDS diagnosis and you always are listed with AIDS.   

Certainly, all of us can understand your fears, but I wouldn't let a stupid label get ya down.   

Be proactive and follow your doctor's advice and I'm certain you will see a complete turnaround.

Hang in there,

Wesley

[carousel]

.

[poet]

Hi.  Sorry that you have reached this number.  I thank you for posting that you now wish that you had started meds last Summer, if only for others who will read this and perhaps think about their own situation: wait or start?  I allowed my cd4's to reach 250ish before I started.  Please make sure that a genotype has been done before you start so that your first group of meds. is one which should last you?  Keep coming back here to let us know how things are going.  Best, Win

[allanq]

Don't be too freaked out by your CD4 count. I've been under 200 for over a decade with a CD4% that fluctuates between 9 and 11%. For quite a while, my CD4s were pretty close to single digit. During all this time, I've never had a significant OI. I did have a case of molluscum (little wart-like things on my face and hands) for a while, but that went away after my VL became undectable and my CD4s went over 100. (I'm currently at 160.)

There are many people on this forum who have rebounded from extremely low CD4s to counts that are around 400 or even more. I'm not one of them, but, even so, I've been doing well.

Starting meds is a big step, but I think you're going to be fine.

Allan

[virgo71]

I know exactly how you feel. When I was diagnosed my CD4 count was over 200 and then dropped to 186. My first doctor told me the day after I was diagnosed I had to start meds and I was devastated. I started to see the doctor I have now and when she told me my numbers were 186 I freaked out. I told her my first doctor told me that under 200 and I offically had AIDS and her response to me was "That's what we told people 15 years ago not now". She also said that it was for insurance reasons that a number had to be determined so people could go on disablilty.
It still freaks me out and my numbers have been going up slowly. I am surprised at how fast numbers decrease and how slow it takes them to go up. As far as starting meds it's not the easiest thing in the world to do but you'll get used to it and I haven't had many side effects at all. A few stomach issues but Mark gives good advice that I've listened to and appreciated.
Good luck.

[Londonguy]

Thanks so much for all the responses, I truly appreciate them.  I don't have much of a support network with regards to my HIV and I find this forum an enormous help and an invaluable source of information.

I do feel better now, it was just a big shock to see I'm suddenly nearer to 100 than to 200.  I do urge anyone who is wavering over treatment to try and start it when they still have good numbers.  I would kill right now to start at 300.  But what's done is done and I need to look forward to recovering with the help of the meds.  I just hope that I don't get bad side effects because I'm starting a new job next week.  Worst.  Timing.  Ever.  Lol

Cheers guys

Jamie

[jyngfilm]

   Little to add amongst the great comments above. But FYI, I was found Poz Jan. 06. lived in denial for about a year. Finally went to ID Dr. Jan. 28, 2007  and  was totally freaked with cd4 of 154 and vl. 355k  Started Atripla that weekend. I go back Feb. 8 07 for next set of blood work. Obvioulsy...I dont know what it will be, but my attitude is hopeful. I have (so far) not had any appreciable side effects from meds. At the time of the above blood work my % was 21. I've really not had any affects from my diagnosis. OR?? maybe I have.? The reason I cant tell is I'm 50,and I've never been 50 before, so the aches and pains I do have could just be from being an old fart?? >>> I think you'll be fine.  But you best make yourself believe you will be!!!!
Regards, ~jordon

[tigger2376]

Good luck in your new job. If you look at my posts you'll see I've had treatment issues but I'd just like to reassure you that most things can be dealt with. I've had the lot. Wasn't on meds for 5 years,got PCP,went on meds,got stevens-johnsons(allergy to meds),new meds,bad reactions,new meds. So if a drama queen case like me can be helped,we all can! My CD4 now 447 from 80,viral load down to less than 50 copies in 2 months! i'm sorry I'm sometimes not the most articulate correspondent but I guess what I'm trying to say is we're all rooting for you and try not to panic.Concentrate as much as you can on the good things,we're here for you
joh
x

[koi1]

Hey Londonguy,

Remember that AIDS is a label/definition. In this country (United States) you do not climb in and out of it. The way I understand it once you have an AIDS diagnosis and start meds you keep this label. However this may be to secure benefits and has less to do with how people acutally feel healthwise. I have met people who were feeling horribly with cd4's in the 400's and felt much better after starting meds.

However cd4's below 200 generally signal a decline in the immune system that must be carefully watched, and treated with a regimen. I fell to a cd4 of 70 and felt life draining from me until I started meds. Though there have been some side effects I feel an upward trend in my health and attitude.

Starting meds is not the worst thing that could happen to you. You will probably feel great in a few months. Don't freak out. Inform yourself, be an active participant in your treatment, and you will see how your health will improve.

rob

[red_Dragon888]

have faith that you will recover.  Positive energy draws positive power.

[libvet]

I don't agree with defining HIV and AIDS by one CD4 point makes sense.   Nor do I agree that one AIDS diagnosis and you always are listed with AIDS.   

Certainly, all of us can understand your fears, but I wouldn't let a stupid label get ya down.   

Wesley

I tend to agree that it is scary and with your assertion that one shouldn't put too much weight on a label, but personally, until they really come up with cure for this virus, I am all for keeping the "once an AIDS diagnosis always an AIDS diagnosis" thing.   Unfortunately, the way our system works an AIDS diagnosis helps to maintain any public assistance and sometimes even what treatments your insurance will cover. 

I'd hate to see people on something doing them a world of good and improving their health suddenly find themselves cut off from treatment because their CD4 count bounced up a couple of hundred points.

[SASA39]

More important than number is composition of your Cd4 cells.
Post "Life expectancy and some Q ".So as Einstein said once everything is relative.................

[siongi]

I repeat what mark has said.

[Londonguy]

Just to update you guys...went to the clinic yesterday and discussed whether to start Sustiva and Truvada or Sustiva and Kalexa.  It seems that my clinic is starting to push people in the direction of Kalexa if their blood test shows they're unlikely to suffer an allergic reaction so we ended up going with that.

Took them for the first time at 11 last night and woke up at 8 this morning kind of disappointed because nothing had happened.  Lol.  Granted, my dreams were a bit crazy, but I had crazy dreams the night before I started the meds anyway.  I got out of bed to wash my face and felt a little bit dizzy and detached.  Sorta like when you're stoned and there seems to be a barrier between your mental and physical self if that makes any sense.  Nothing major at all though.  Went back to bed til 10am and have been fine since then. 

Obviously I'm not going to count my chickens too early because I was warned the sides often get worse until about 2 weeks in, but it was a remarkably trouble-free night and day.  Hopefully it'll continue 

[Boo Radley]

London,

Congrats on making it through the first of many future doses of meds with such minor side effects.  I think usually fun things like nausea, dizziness, vomiting, etc. begin soon after you start meds, not later.  The grogginess will probably end quickly as your body gets used to the wonderful new chemicals you add to it daily.

I started meds with a CD4 of 169 in October, 2004 and my 2nd to last CD4 count was 394 (my last CD4 was 220 but it's winter here and I always blip in winter).  A count of 147 is a lot better than a count in the double digits so don't worry too much about the 200 marker. 

I want to concur with libvet the diagnosis of AIDS when the CD4 count falls and stays below 200 is actually beneficial for those of us on disability.   My CD4 was above 200 3 months after I started meds but I didn't and still don't have the physical strength or stamina to go back to work, even part time.  If I was not still considered to have AIDS my private long-term disability insurer would try to dump me in a nanosecond.   I paid into that system for 20 years and have no qualms about staying on LTD until the wonderful day comes when I can work full-time again.   

One reason I'm adamant about continuing to get LTD benefits is the LTD insurer won't allow me to make 5 cents without subtracting it from my LTD check.  I have no incentive to try to re-enter the work force because if I was unable to continue after, say, 6 months, the LTD insurer would tell me to take a hike.  I know this admission will prompt some people to think I'm a welfare mooch but I don't give a FF.  As it is simple jobs like raking leaves for 45 minutes drain my strength and I have to lie down afterwards.  Most employers would object to me taking a nap in the middle of the day.

Good luck on your next blood work!

Boo

[marco23]

Hi London!
Thanx for the update!
My cd count was 74 when I got on meds (was in bad shape)...it's soo good to hear that you're better...keep us posted.

<HUGS AND KISSES>   

[Longislander]

HI, Glad you got through the first night!  I hope you're feeling better mentally, that your kicking the virus' ass!

Thanks for sharing your experience with the meds, and please continue to update us on how you're doing~

Paul

[Rightbrain]

Londonguy,

I understand how you feel.  I went down to 100 within a year of infection.  I didn't have any problems other than tiredness.  That went away really fast when I started meds.  almost 5 years later I'm hovering around 4-500.  I wonder if damage that comes quickly is as bad as damage that comes over a long period of time.  Anyway, I'm doing fine and you will too.  Still, the day you hear that you have crossed the line and stamped with the AIDS diagnosis is no fun.  I'm sorry for you.

brother joe

[ndrew]

Hey there,

Sorry for all of this, but our bodies are pretty amazing and with a little pharmaceutical help, you will be a superman in no time! 

Cheers to you!

Luv and support,
Drew

[Londonguy]

Thanks again guys 

2nd night on meds was totally uneventful, can't recall any dreams, let alone wild ones, and slept like a baby.  Fingers crossed eh?

In fact I'm more worried about the Septrin/Bactrim than the meds.  I was browsing the forum just now and was totally freaked out to see someone had suffered kidney failure while taking it. 
Am I worrying about nothing with this?  I'm considering taking it every other day instead of daily.  Would that be a stupid thing to do?

[Alain]

Londonguy,

Try not to worry and you should talk to your doctor before changing the amount of Bactrim you are taking.

Should you have intolerance to it, there are alternatives like Mepron or Dapsone.

Good luck. Alain.

[red_Dragon888]

Down play the negative, up up with the positive. 

[SoSadTooBad]

Jamie - hang in there.  Got from 78 to 256 in about 6 months.  Feeling great and doing fine on Sustiva/Combivir.  Funny thing, this is the first winter in years that I have not even had a cold so far - so even at 250ish, I feel like my immune system is doing it's job pretty ok. 

In a few weeks, you will stop counting the days since you started meds, and you can start focusing on living again - that is when the real fun starts.  In addition to robbing us of our physical well being, the virus can rob us of our capacity to look forward, be optimistic and to live our lives as fully as possible.  Once you get things nailed down physically - get back to living - lots of the guys and gals on this site help us to keep our eyes on that prize. 

Stay strong.

[Ihavehope]

Hey

I am glad you have no side-effects from your meds.About the bactrim, I wouldn't worry so much about it, since it is only temporary, but you should take the amount that your doctor tells you until you are above 200. Even in the 200's they may ask you to continue bactrim until they see a consistency in number increase. I was told that I would be on bactrim until I reach 300 but every doc is different. I try to listen to my doctor, but sometimes I feel it's too many meds so I still take Bactrim everyday but cut it in half and take half a day but your numbers are too risky to try to avoid bactrim so just follow your docs orders until you are above 200.

You are being responsible by taking your meds and doing what you have to do to stay alive. I am 26 years old so I know how it is to feel yng and having to deal with meds. It's a bitch but hopefully we wont have to deal with these harsh meds forever, better alternatives should come about in the near future.

Al

[Londonguy]

I'm just getting majorly stoned from the Sustiva right now lol 

Anyway yeah I'm still taking the Septrin, gotta do everything I can to keep myself well.  I just keep getting into minor panics over things I read.  I've had intermittent tingling in my feet today and I worry about nerve damage.  Apart from that I feel fine.

While physically I'm not suffering any major side effects though, mentally I don't feel in a good place.  I feel depressed when I think that at 22 I sit here worring about kidney damage from septrin or peripheral neuropathy or how I'm going to fit my meds in around my shift work or checking whether I have a rash from the Kivexa.  I shouldn't have to be worrying about all this shit at my age. 

Anyway I can tell I'm gonna crash from the Sustiva in a minute, maybe I'll have a better perspective tomorrow

[david25luvit]

Hey London guy....

                          Take a deep breath.  In addition to your meds a good positive attitude will do wonders for the spirit and the body.
Like others here have mentioned....Now that you're on meds you should see an improvement in your CD4 count.  Glad to hear you're
having no bad side effects.  Remember, my friend, you are in good company and we are here.  You have nothing to fear but fear itself.
I too have recently been hovering around 200 and I refuse to let numbers dictate my life.  As redundant as it may sound...taking one day
at a time....works for me.  It also allows me to appreciate how fortunate I am to be alive and enjoying a certain quality of life.  Keep the
faith good buddy....

[Just John]

Hi London,

ditto to most of what everyone has already said. Try not to dwell too much on the negative possibilities, your imagination will play all kinds of tricks on you in the early days, feeding off your apprehension and making you think that all kinds of nasties are about to happen.

Obviously taking meds is a serious, if in your case absolutely necessary step; I would guess that most people feel some changes taking place in the early days whether real or imagined but the more serious side effects are, thankfully relatively rare. I can't say for certain but I always believed that the sort of nerve damage that causes P.N. for instance, is caused by long term use rather than an immediate reaction. The Septrin is an antibiotic and as such you really should take it as prescribed, if you're having problems with it contact the clinic before stopping or altering the dose, I know how you feel, however, I was started on Viramune and spent weeks reading about the negative side effects and worrying about the possibilities of liver failure or worse.

If it's any consolation to you, I had a CD4 count of 168 in November 03 and was a respectable 485 in Nov 06 with barely a noticeable change to any other aspect of me or my life. Yeah I know that I'm one of the lucky buggers and long may it remain so, but I'm not alone by any means, with any luck you'll join the same club.

Good Luck, John.

[tigger2376]

Repeat of what everyone has said! My consultant says it can take up to 3 months for your body to adapt to meds. the thing about the virus is that each individual is different..sorry, rearrange this sentence granny,teach,your,eggs,suck to!   I read your posts and, hopefully without sounding too much like you'll need a bucket, (coz my comments are so emotional they make you sick!), I really do feel for you. Aged 22 or 102 this thing is a bitch BUT there is hope. This site has helped keep me sane, (as much as I ever was), there are a vast majority of well informed,decent,caring human beings who will listen and give you practical advice as well as huge hugs!
Be well

[Londonguy]

Thanks for the words of encouragement guys.

The sustiva side effects are definetely settling down which is a bit disappointing in a way lol.  I quite enjoyed getting stoned off it.  I still feel a bit high a couple of hours after taking it but nowhere near as bad, and I haven't had any trouble some people seem to have with regards to dreams that are so vivid you don't feel like you get any sleep or anything like that. 

I think I'm probably just being paranoid but I do feel like I have had a lot of tingling in my feet and aches in my hands and feet since starting meds.  Seeing as it's only been 8 days I doubt itcould be the meds but I am a bit worried. 

Still worried about the prospect of a HSR to the abacavir too, seeing as most occur in the second week of treatment.  I felt pretty hot for a few hours after taking it tonight but I seem to have cooled off again now.  Or maybe I'm just being paranoid again.  To be honest the prospect of me worrying about the abacavir for the next 6 weeks or so makes me feel mentally drained.  I wanted to go on Truvada but the doctor mentioned possible kidney problems as a reason not to.  Since reading that doctors in the UK have been told to take cost of medication into account and that Kivexa is cheaper than Truvada, I'm not convinced they don't want to put people on Truvada just because it costs more.

This is a horribly negative post, and yet I feel lucky that the meds haven't really made much of a difference to me.  It's just the fear.

[tigger2376]

Honey,the first few weeks on a new regime can be crap.Not only may your body be screaming for mercy but you are so aware of everything physical that it gets so you almost expect all the bad side effects! really not belittling ANYTHING you have been through, don't get me wrong. Personally I have found that shiatsu massage really helps, if only to get you so relaxed you're like a bendy toy after the first few sessions! I have now changed meds thre times in 7 months to get right one but I sincerely hope your current meds will sustain you to a ripe old age without any further problems. Be well and TRY not to fret

[tigger2376]

And on a purely practical note, if the heat thing is still a problem, especially at night,can direct you to a company who supply hollow pillows with an inner core  of gel that can be frozen, then reinserted, its BLISS. It also can be heated in winter for cold feet/hands/neuropathic pain, and they even do them in teddy bear form.xx

[Rainbow1]

Hang in there. it will get better