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Main Forums => Living With HIV => Topic started by: rigger82 on July 06, 2012, 10:58:49 am

Title: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 06, 2012, 10:58:49 am

I don't really know where to turn and this site popped into my head immediately.

I had a psychotic breakdown last year and threw my meds away. I just started to feel a bit tired lately and I got my mind back together with help from psych ward.

To cut a long story short, I gave blood on monday and just called up to see the result. i have zero CD4 count and 3% something else. Apparently I may have been this way for sometime, but now i KNOW i'm freaking.

Got Dr on monday. Can you come back from zero? I'm just a little tired, other than that feel fine.

Hope to hear from you guys. I just turned 30 last month and was infected at 15yrs but diagnosed at 23 yrs  old.

PLEASE come back with some info. I was just told on the 'phone and my heart is racing.

Gary x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 06, 2012, 11:49:38 am
I don't really know where to turn and this site popped into my head immediately.

I had a psychotic breakdown last year and threw my meds away. I just started to feel a bit tired lately and I got my mind back together with help from psych ward.

To cut a long story short, I gave blood on monday and just called up to see the result. i have zero CD4 count and 3% something else. Apparently I may have been this way for sometime, but now i KNOW i'm freaking.

Got Dr on monday. Can you come back from zero? I'm just a little tired, other than that feel fine.

Hope to hear from you guys. I just turned 30 last month and was infected at 15yrs but diagnosed at 23 yrs  old.

PLEASE come back with some info. I was just told on the 'phone and my heart is racing.

Gary x

Gary Im really sorry to hear this. I never been in this situation before but, if are feeling fine in general I think its a good sign indeed.

My doctor said he already took care of patients who had CD4 in the single digits and they bounced back.

But I do feel that waiting until Monday is not gonna do your mental health any good. Is there any way to see a doctor today or tomorrow?
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 06, 2012, 12:06:44 pm
My clinic is shut at 5pm.

My head is going nuts.

Losing a grip. I suffer quite deep psychosis.

I've PCP. Esophegal Candida (awful). I'm in near permanent pain with herpes that aciclovir wont shift and I can sleep for 30 hours.

I had a voice a year ago on a boat that told me to chuck them in the sea and not take them again.

Told my shrink but they dismissed me and i never went back to the clinic. My boyf and mum made me go on monday. ZERO?? Shouldnt I be dead?

Can I reverse this?
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: leatherman on July 06, 2012, 12:35:46 pm
ZERO?? Shouldnt I be dead?

Can I reverse this?
no immune system, aka cd4 0, doesn't mean immediate death. It just means that you're vulnerable to any disease that comes along because your immune system is no longer fighting at all.

I had 5 cd4s AND PCP pneumonia and was in the hospital for 5 days. I wasn't able to get meds until 2 months later because there was no ASO in my area and getting state medicaid took a while. That was 18 yrs and 3 months and 2 wks ago, so yes it's possible to reverse this and recover. ;) However, you need to get onto meds ASAP and stay on the them. HIV medications should NEVER be stopped once started, no matter what one thinks (or what the voices say. ;) )

No not miss your doctor appointment on Monday and best wishes to you!
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 06, 2012, 12:47:47 pm
My clinic is shut at 5pm.

My head is going nuts.

Losing a grip. I suffer quite deep psychosis.

I've PCP. Esophegal Candida (awful). I'm in near permanent pain with herpes that aciclovir wont shift and I can sleep for 30 hours.

I had a voice a year ago on a boat that told me to chuck them in the sea and not take them again.

Told my shrink but they dismissed me and i never went back to the clinic. My boyf and mum made me go on monday. ZERO?? Shouldnt I be dead?

Can I reverse this?

Gary if theres no way to see a doctor before Monday then I'd suggest you stay indoors as much as possible, you have to avoid viruses and bacterias now. Not that you can't get them indoors but at least I'd say its safer.

Maybe even using a mask? Not sure if it helps but it might calm you down a little. And ask your boyfriend to stay by your side.

But don't panic. Take leatherman's advice, you can bounce back from this. Be positive.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Solo_LTSurvivor on July 06, 2012, 01:02:18 pm

 I do not have HIV/AIDS but my mental conditions are enough.


Matrix, we know you mean well but since you do NOT have HIV, you probably should not be posting here on this particular forum.  Be sure and read the Welcome Message (http://forums.poz.com/index.php?topic=277.msg2182#msg2182).

Modified: looks like the great mods are on the case  ;)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: RWR on July 06, 2012, 01:07:32 pm
I think thst was a silly ideal to toss Your meds into the sea. I was at 6 at one point and coming back. Good luck
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 06, 2012, 01:09:03 pm
Solo, I edited your post to edit the quote - I only left the relevant info and deleted the terrible advice.



Hi Rigger, welcome to the forums.

I think you'll be ok until Monday, or maybe try to get an emergency appointment for tomorrow. You don't need to do any of the stuff that Matrix told you to do, if you managed to read his post before I deleted it.

Lots of people have bounced back from single digit numbers and you can too. Stay on your meds this time!

Good luck and keep us posted. :)

Ann
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 06, 2012, 01:13:12 pm
I think thst was a silly ideal to toss Your meds into the sea. I was at 6 at one point and coming back. Good luck

Of course it was silly. I was not in my right mind at the time. I was having a schizo/psychotic episode that lasted for a long time and I was sectioned.

Thanks for your wishes of luck  ;)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: joemutt on July 06, 2012, 01:24:34 pm
I hope you will receive the treatment you need and will get better soon.  :)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: emeraldize on July 06, 2012, 01:56:32 pm
Hiya Rigger,

Welcome -- even though in a heightened state -- you need a proper welcome.

Just yesterday, I was talking with a young man who has herpes and acyclovir is not effective for him, only Valtrex is. So, only because I bumped into this info so recently am I passing it along.

Look at each of these as hurdles and, you're gonna jump them with help one at a time.

It's gonna feel like a long weekend to you until you have your appointment on Monday. So hang out here. Plan to eat well. And we'll definitely be around -- the whole family of us.

Em
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: drewm on July 06, 2012, 02:10:21 pm
I was dxd in the hospital with pneumonia. My CD4 count was 8. VL was a half million. A doctor from MD Anderson Cancer Center told me "we can reverse these numbers and you will be OK."

That was two years ago. CD4 today is between 280 and 330 and I am undetectable. Get to your doc as soon as you can and remain adherent to the meds.  ;)

Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: CraigMKE on July 06, 2012, 07:20:25 pm
I started my diagnosis with a cd4 of 7. Still alive and kicking. Hang on. It will be ok.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: mecch on July 06, 2012, 07:53:30 pm
Gary / Rigger, your two posts in this thread are contradictory.

You open by saying you feel tired but otherwise fine.

A lithe while later, you say you have PCP, thrush, and unchecked herpes.

Which is is?

Hear you on the collapsed immune system.

Hear you about the severe mental challenges.  Thus the confusing posting, above?? 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: tednlou2 on July 07, 2012, 12:27:50 am
I was also confused by your current health situation.  I'm sorry to hear about your current numbers, but I'm so glad you now know them and are taking action.  I got down to 171 and freaked out.  I can only imagine the stress and fear you're experiencing.  My ex got down to a CD4 of 2.  However, he only learned this after being hospitalized with many issues.  So, it is good you know and have an appointment to get back on meds, and prevent getting ill.  We've all heard of similar counts here (many experiencing themselves) and are now doing very well.

About feeling fine, I know several have said here that people with very low CD4's can feel totally fine, because their immune systems aren't kicking in to fight off common things like a cold or flu--if your immune system isn't working, you may not get fevers, for example, which is the immune system's response to being sick. 

I wish you all the best with your physical and mental health.  Please let us know how your appt goes and updates on your increasing CD4 counts over the next few months.  I would have thought your doc would have called in a prescription for Bactrim, until you can be seen.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 07, 2012, 03:21:29 am
Hi Mechh

I wrote my post in a panic and I get what you mean. My grammar wasn't right.

I've HAD PCP before, in 2006 when I was diagnosed.

I have, right now, herpes that won't budge.

Last week I had candida in my mouth and throat and every time I ate it felt like it was getting stuck in my CHEST and not going down properly. I didn't know candida could go all the way down. Just thought it was a mouth thing. I went and bought Fluconazole and that helped surprisingly quickly.

I have had septrin before, but was very allergic to it, so I have to use a pentamadine nebuliser which I gather I will use straight away on Monday.

About these fevers. Not noticed any in the day but in the last 2 weeks, when I wake up in the middle of the night, I am dripping wet along with my pillows and sheets but am ok in the day.

I say I feel fine, but I mean that in a way that I can stand, walk etc. but I can't walk far and have no energy. Just a 300 meter walk and I have to sit down, but I'm not on my back unable to move.

I randomly vomit though, just out of the blue. No nausea, can't feel it coming, then bang! I just throw up. Happens in the street, home, everywhere. Don't know the cause of that. Metroclopromide don't help, as I don't feel nautious.

I'm sure on Monday my doc is going to nuts but hopefully find a new regime. I am a massive needle phobic, not intramuscular, they are fine, but vein ones, wow. I nearly faint every time. In 6 years it's still as bad as the first time. I even wear a pillow case so I can no way be tempted to see what they're doing.

Thanks for your reply. This weekend is gonna really drag.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 07, 2012, 03:25:36 am
Gary / Rigger, your two posts in this thread are contradictory.

You open by saying you feel tired but otherwise fine.

A lithe while later, you say you have PCP, thrush, and unchecked herpes.

Which is is?

Hear you on the collapsed immune system.

Hear you about the severe mental challenges.  Thus the confusing posting, above??

I've had pcp before. Was hell. There's no way I could manage to write a post if currently had pcp.

I wrote in a frenzied way, so I see how it came across.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 07, 2012, 04:33:50 am
Hello Gary,

Welcome !  I can tell you, that from experiences, things will get better for you. In 2003, ( 18 years after I was infected  with HIV, I began treatment).    I was one very, sick, weak and tired individual, with several different OI's going on, including having Bacterial pneumonia, Esophageal candida, massive weight loss. My lips for a short period of time, looked as though they went through a meat grinder. Fatigue was incredible

 My t-cell count in September of 2003 was 16, a viral load over 500,000, and a percentage that went as low as 4%.  Once I got started on all the proper medications, things started improving quickly. I am sure they will for you too.

You will need to get on the proper medications, to help get you through this rough period.  And it is a rough period. So, listen very closely to your doctor this Monday.  I would suggest, that you bring someone with you , that you can trust, that can help you with this doctors office visit on Monday. It can really help, to have someone there with you.

You will need to be on some sort of prophylaxis, to prevent opportunistic infections from taking hold. Diflucan can get rid of thrush. I was on that. You may be on a few additional pills ( besides HAART) , to  help pull you through this.  But you will pull through, and it won't always be an easy road, until you start boosting those T-cells back to over 200. 



Most importantly, you need to be dedicated,  to getting yourself back to good health again.  Which means, taking ALL your medication, when your supposed to, and not MISSING or SKIPPING any doses, and keeping up with the blood tests, that the doctor may order for you. This is crucial to your recovery.  As time goes on, some of those medications can be stopped, the blood testing will become less frequent. ( I know you hate needles)

It also means, eating right, getting the proper nutrition,  sleeping right, and knowing when to just slow down a bit, when your feeling exhausted or tired.

Hang in there.  Things will get better, but the ball is in your court now, so take care of yourself, and be patient.
Things may take some time, but it will get better.

If there are questions you need to ask your doctor, this is a good time, to write all those questions down in a notepad.  And take that notepad with you, when you see him/her on Monday.

Keep us posted, and try to take it easy---Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 07, 2012, 09:12:35 am

My lips for a short period of time, looked as though they went through a meat grinder.


Just curious Ray, did that happen only after you started Diflucan? I ask because every time I have to take that stuff, I get sore, chapped lips. The first time it happened I thought it was coincidence (being winter), but it's happened every time since, regardless of the season or weather.

Hang in there Rigger!
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: wolfter on July 07, 2012, 10:00:18 am
Want to send some support your way.  I feel your pain and think I understand your feelings.  I wish I could go back and take my own advice that I'm sending your way; you should consider talking with a professional or at a minimum, continue seeking support here.

I too had some sort of psychotic episode that I didn't recognize a few years ago after I lost my long term partner.  I seldom reveal this; but I made the idiotic decision to stop taking my meds.  In my mind, it was a morally sanctioned way to end my life without actually doing so.  I didn't have the mental resources to think through the repercussions of my decision.

I ended up with single digit CD4's with a VL of 6.7 million and was suffering horribly.  But after a while, I did bounce back (once again) and I'm confident you will also. 

Take care and sending you positive energy.

Wolfie
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 07, 2012, 02:07:35 pm
Just curious Ray, did that happen only after you started Diflucan? I ask because every time I have to take that stuff, I get sore, chapped lips.

Hang in there Rigger!


Hello Ann,...

Kind of hard to remember. There was a few weeks there, of just being in a daze !   :-\       I was just checking some on my previous start times on prescriptions:

On 9/27/03, I was started on:

Prednisone--20mg tablets

Vi-q- tuss - liquid

Sulphameth/ trimethoprim 800/160 tabs ( later changed to Dapsone)

Diflucan --100mg tabs.



On 10/15/03, I was started on

Valtrex 1gram tablets and

Zithromax 600mg tabs ( this was taken two times a week)


On 10/23/03

I start on HAART:

Viramune,  Epivir, and ( at that time Zerit)


What a pill factory I was back then  :o   



Gary,


You've seen what I've been though back in 03.  But I am happy to say, my t-cells are currently at 507, and undetectable. Current % is at 17. Overall I would say I am doing very well !



You'll get there---Ray




 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: onemoretime on July 07, 2012, 04:40:43 pm
i just did a year of HCV treatment including incivik.. it destroyed my labs... still undectable but cd4 dropped to 150 from years of 600...GET ON BACTRUM IMMEDATLY!!!!!!!  NO UNCOOKED FOOD......its great you feel ok
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Newguy on July 07, 2012, 07:38:10 pm
I am not downplaying Gary's situation but hypothetically speaking if he were insulated like in a bubble for some time so he does not get sick, shouldn't the virus wipe itself out? Remember the medicine just inhibits the virus so no further replication occurs but I believe the body clears out viremia in the blood stream. So if the virus depletes all his available CD4 cells including the reservoirs since they are actively replicating, should not the virus disappear  from his immune system. I am trained in molecular biology by the way.

But anyhow good luck to your health Gary.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: mecch on July 07, 2012, 08:37:46 pm
I am not downplaying Gary's situation but hypothetically speaking if he were insulated like in a bubble for some time so he does not get sick, shouldn't the virus wipe itself out? Remember the medicine just inhibits the virus so no further replication occurs but I believe the body clears out viremia in the blood stream. So if the virus depletes all his available CD4 cells including the reservoirs since they are actively replicating, should not the virus disappear  from his immune system. I am trained in molecular biology by the way.

But anyhow good luck to your health Gary.

Oh my god shocking ignorance Newguy!! NOoooooooooooooooooo!  Trained how? Jeeeeeeeez!  Jesus!
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Buckmark on July 07, 2012, 08:38:57 pm
I am not downplaying Gary's situation but hypothetically speaking if he were insulated like in a bubble for some time so he does not get sick, shouldn't the virus wipe itself out? Remember the medicine just inhibits the virus so no further replication occurs but I believe the body clears out viremia in the blood stream. So if the virus depletes all his available CD4 cells including the reservoirs since they are actively replicating, should not the virus disappear  from his immune system. I am trained in molecular biology by the way.

But anyhow good luck to your health Gary.

It wouldn't be just a question of isolating the patient in a bubble, because the body itself often harbors some pathogens that the immune system keeps under control.  For example, a large percentage of the population (>50% I believe) has been exposed to CMV during their lifetimes.  Viruses can go into latent states in certain long-lived types of cells and tissues.  So when CD4s are depleted, these latent viruses within the body essentially have free reign.   Essentially, the body needs to be protected from what is already inside of it, as well as external pathogens.

Back to the OP, Gary, I hope you get the needed attention right away.  You need to be on anti-viral meds.  Just because you feel fine doesn't mean you are fine -- your health situation could change rapidly.  Fortunately, with the right meds, I think you can get this under control, but you need to act quickly and decisively. 

Regards,

Henry





The problem is that HIV can go into a latent state in long-lived types of cells / tissues, which made it impossible (thus far) to completely eradicate from the body.  Even if you could kill off all
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 02:01:24 am
His people.

Thanks for all your advice..

In my original post I said I feel fine.

Yesterday candida popped up and I found it hard to swallow. Bought fluconazole immediately.

It's 7 am now and I have woken up 3 times dripping in sweat and have this unbelievable pain EVERYWHERE. my whole body is aching. Like a pulsating pain. Have just taken painkillers.

NOW I'm scared. This is something I've never felt before. I see my doc at 1 pm tomorrow

My hands are stiff and cold and my back ...... Wow. Huge ache.

What is this? Praying it goes away.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Common_ground on July 08, 2012, 02:12:27 am
Im not a doctor but If I were in your situation I would drag myself to the ER asap. With your counts you should already be in-patient and under the supervision of a doctor. Dont stress out thou, but you need to seek medical care.

Youll be fine but better to be safe than sorry.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 02:41:22 am
The ambulances here will only take you to one of 2 local hosps.

Both do not HIV docs or drugs.

My hosp is on the other side of London and I cannot afford a cab and I think the tube is a bad idea.

Am allergic to septrin. Badly. I need pentamidine nebuliser. The 2locals don't have it.

Breathing is a bit tough and throat sore/hard to swallow. Must be that candida. Just popped another fluconazole.

I love our NHS but our waiting times in ER can be over 8 hours. ESP after a sat night.

I do realise I need my doc. I think on Monday they admit me. Horrible, painful things coming too quick and fast and with force. Cannot get back to sleep. Am freezing but sweating.

Trying not to panic.

I was born Catholic. Never been a religious guy. Funny how you pray when the shit hits the fan.

Thanks for your post. Trying to keep myself occupied so head doesn't bring on psychosis.

Oh fu**ing dear. That's another fine mess I've got myself into.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 08, 2012, 02:42:33 am
Listen Gary,...

Try not to play superman OK ?  If you think that you can't wait until tomorrow, to see your doctor, you may need to get yourself to an emergency room.

What your describing, brings back some pretty vivid memories for me.  Sounds a lot of what I was going through.

It was a Friday afternoon,  I was having the sweats, chills, and excruciating body and joint pain.  I think at that time, I was living on Tylenol.  I was coughing so bad, I could barely catch my breath, And any body movement that I attempted, felt as though a had a 200 pound weight attached to me.

Walking up the stairs, was brutal.  Long story short,  At that time I only had my primary care physician. I got into my car, and drove to his office.

He took one look at me,  and said " I need to get you in the hospital" He asked me if I could drive, I said "yes" , and I drove to the hospital that was about 10 minutes from where I lived.   The doctor made all the necessary calls to get me a room the minute I arrived at the hospital.

Well,  It ends up , that I had pneumonia, and a few other things going on.

The point of what I am saying here is this. Don't be stubborn, and don't try to brave this out.   If you can't wait to see your doctor tomorrow, "DON'T" hesitate, to get yourself to an emergency room.


If it was me, ( and knowing what I know now) I would get myself to the emergency room.  Can you call your doctors office now, to at least get an answering/ call service, to give you some advice? You need to be careful.


Keep us updated---Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 02:44:20 am
I am not downplaying Gary's situation but hypothetically speaking if he were insulated like in a bubble for some time so he does not get sick, shouldn't the virus wipe itself out? Remember the medicine just inhibits the virus so no further replication occurs but I believe the body clears out viremia in the blood stream. So if the virus depletes all his available CD4 cells including the reservoirs since they are actively replicating, should not the virus disappear  from his immune system. I am trained in molecular biology by the way.

But anyhow good luck to your health Gary.

I don't know a lot, but your post set alarm bells off in me. Doesn't seem right, even with your medical knowledge.

Nice of you to post though.

Gary
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 02:51:22 am
JRE. What you described is EXACTLY how I feel.

Not trying to be superman. Feel superfu**ed. my two locals don't have HIV docs/clinics.

I can't drive ( had a seizure from encephalitis and crashed few months back)

I could just call ambulance coz they can treat pneumonia. Had it before. Feeling similar.

Thanks for your concern. Really am taking it on board. Thank god for iPad. Could no way get up to sit at a computer.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 08, 2012, 03:01:29 am
JRE. What you described is EXACTLY how I feel.



I could just call ambulance coz they can treat pneumonia. Had it before. Feeling similar.




That sounds like a plan !,  If you need to call an ambulance go ahead and do that. You would be a hell of a lot better off getting immediate care, than possibly waiting until tomorrow.


Take care----Ray


Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Common_ground on July 08, 2012, 03:05:01 am
The ambulances here will only take you to one of 2 local hosps.

Both do not HIV docs or drugs.

My hosp is on the other side of London and I cannot afford a cab and I think the tube is a bad idea.

Am allergic to septrin. Badly. I need pentamidine nebuliser. The 2locals don't have it.

Breathing is a bit tough and throat sore/hard to swallow. Must be that candida. Just popped another fluconazole.

I love our NHS but our waiting times in ER can be over 8 hours. ESP after a sat night.

I do realise I need my doc. I think on Monday they admit me. Horrible, painful things coming too quick and fast and with force. Cannot get back to sleep. Am freezing but sweating.

Trying not to panic.

I was born Catholic. Never been a religious guy. Funny how you pray when the shit hits the fan.

Thanks for your post. Trying to keep myself occupied so head doesn't bring on psychosis.

Oh fu**ing dear. That's another fine mess I've got myself into.

You probably need to treat your cough, fever and other possible infections
before going on ARVs anyway, so they can surely help you at any of your local hospitals. So do yourself a favor and go to a hospital to get a head start. They can run checks and keep an eye on you until you stabilize. You dont want to pass out at home or get too weak to even be able to go there by yourself, save that misery for another rainy day.

Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: tednlou2 on July 08, 2012, 03:19:15 am
Gary,

I wish there was some way we could help you with the cab, if you choose to go to the hospital.  I can understand being hesitant about using public transportation now.  If the cab company had a website where people could add money to a customer's account, I would help.  However, I don't think cab companies work that way.  Cabbies want their money in the car.

However, any ER would be able to examine you and whether you need treatment now for something like pneumonia.  I had bacterial pneumonia, but didn't recognize it.  I didn't know I was poz at the time.  I put off going to the doc, because I didn't have insurance at the time.  I got very ill and ended up in the hospital for over a week.  And, your situation is more precarious.  I don't want to add to your anxiety, but definitely get to the ER, if you feel something isn't right and you can't wait for your appt.  Any ER in a large city should be able to get a patient with HIV/AIDS treated, or transfer you to a hospital that can. 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 08, 2012, 03:20:33 am
Gary,


Somehow, I  missed reading your reply # 27. Thanks for clarifying. I must have been having one of those fog moments, when I skipped over.

I think we were both typing out a message at the same time 



Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 04:40:23 am
Gary,


Somehow, I  missed reading your reply # 27. Thanks for clarifying. I must have been having one of those fog moments, when I skipped over.

I think we were both typing out a message at the same time 



Ray

Mum gave me cash. Didn't want to worry her. Really feeling awful now. Back pain unreal. In taxi as I type. Thanks guys.

Gary x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 08, 2012, 05:15:57 am
Mum gave me cash. Didn't want to worry her.
Gary x


That's Great, glad to hear you've taken action  !  Let the pro's check you over, and get you back into shape.


One day at a time----Ray


Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: britchick on July 08, 2012, 08:42:10 am
Hi rigger82,

Im in the UK too.
Im glad that you got yourself over to the hospital and im sure that they will be taking good care of you now.

We hope  to hear how you  are when you have had a good rest and some meds.

Britchick X
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: onemoretime on July 08, 2012, 08:46:02 am
OMG buddy.....with your numbers i and your sick today..... ur dr appoint is in 23 hours....i wouldd get my ass in a ER immediatly if it was me... even if they don t have HIV DR they can call for advice... u need medical attencion.   just a thought..  MY CD4 dropped to 150 for the frist time after hcv treatment for a year.... I feel like crap... have weitht loss and muscle atriphy from being in bed so much so i know how you feel.. worried.. but you really should be IP
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 08, 2012, 10:46:00 am
I got to hosp. The did bloods and other not nice stuff.

They admitted me immediately. Bloods came in about 2 hours. I have pneumonia and some other infections that crept in.

Dripping in sweat. Awful. They said if I'd waited, it would have been pcp or worse as they're still trying to find out what these other OIs are.

Thanks everyone for urging me to go hosp. I'm on infectious disease/AIDS ward. Pressurised room.

Thanks again.

One odd thing though; they keep talking about fluid around my heart and did ultrasound and want to do more detailed scan. Whole bod aches, not just lung so maybe I overlooked the heart pain.

Again, very grateful.

Gary x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: drewm on July 08, 2012, 10:52:32 am
Gary, glad to hear you are getting medical care. It sounds like that is where you need to be. Please keep us posted as to your progress and hang in there!  ;)

Drew
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 08, 2012, 11:03:03 am
It's a relief to know you're being looked after properly. Thank you for keeping us posted - I've been wondering how you're doing all day. Hang in there! Fingers crossed here that they figure out what's going on and you recover quickly.

Sending love, light and positive healing energy your way.

((((((Rigger))))))
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 08, 2012, 05:39:45 pm
You'll get through this Gary. Im wishing you all the best.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: tednlou2 on July 09, 2012, 02:21:03 am
Mum gave me cash. Didn't want to worry her. Really feeling awful now. Back pain unreal. In taxi as I type. Thanks guys.

Gary x

I am so glad to hear you got to the hospital, instead of waiting.  When I had pneumonia, the back pain was the worst pain I've ever experienced, and I've had back surgery.  I just kept thinking I had pulled some muscles, but it was the fluid build-up.  I have a friend now in the hospital with pneumonia.  He also has fluid around his heart.  He is young.  I suspect he could have HIV/AIDS, from everything I know about him.  But, he's married to a woman, so the docs have not asked him about HIV.  He keeps saying they can't figure it out.  I told him perhaps they should test for HIV just to rule it out, and he got mad at me.  I fear he could be in the same situation, but they aren't treating him properly, because HIV isn't on their radar for him. 

Back to you--I'm glad HIV is back on your radar and you're now being treated.  I wish you a speedy recovery.  I hope you have someone to be there for you in the hospital.  Keep us updated.   

 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: spacebarsux on July 09, 2012, 02:25:06 am
Glad to hear you're being looked after well in the hospital. Wish you a speedy recovery !

Hugs
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 09, 2012, 02:52:23 am
Gary,

Glad to hear your getting the proper treatment.  I can almost bet you, that you will start feeling  better in about 24-36  hours.



Hang in there---Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 09, 2012, 07:16:21 am
How are you today Gary? You're in my thoughts.

((((((Gary))))))
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: britchick on July 09, 2012, 09:11:55 am
Hi rigger82

Glad that you are getting good care.Thanks for updating us .
You are going to be feeling better soon.

Britchick x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 09, 2012, 05:59:44 pm
How are you today Gary? You're in my thoughts.

((((((Gary))))))

Hi Ann and everyone else that's helped me. I'm still in hosp. Always having bloods and an IV. they told me its pneumonia. I got that. Today, after an X-ray , they said the drugs hadnt made much difference. In fact I'm getting worse!!!

My whole body is really all-over painful. I still can't walk more than 300 m before a rest and still burning and sweating.

I have some infections they don't know what they are, so are going to grow them (?) in blood I give tomorrow.

The weird thing is; I'm wearing normal clothes. Not hosp gown. People keep asking me where the patient is, like im the visitor. Have to admit I look really good for some reason. Very healthy. The boyf even said, wow, what drugs are they puttin in you!!

The staff are great and when they know what these weird OIs are they can attack them. My usual HIV doc came to see me today and said we need to have a chat about meds.

As you know, I suffer psychosis, he knows too. He's seen it. I mentioned atripla, as it's one a day, and he fell about laughing "Gary, you're cute and clever, but nuts. If I gave you atripla you'd end up as mad as box of frogs. Never gonna happen"

So we'll see.

Off the topic of me being safe but not better (TB tests by the way).



He really goes out of his way for me but he should do that for everyone. I know it's not a valid issue to my being unwell, but I think he's helping me somehow feel better in my head even though my body is crushed.

He told me my VL is 3 million and totally disgraceful and very dangerous and said it could affect my eyes or nervous system and wants me on meds before Friday.

Wow. Typing all that on an iPhone was tiring. I am actually sweating now.

Thanks people. I never knew strangers' interest could be so helpful. Thanks all you guys.

Gary x x 😃
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: mecch on July 09, 2012, 06:05:45 pm
I'm glad you're being so well taken care of.  I hope they find all right medicine and keep pumping it into you!  Keep your spirit. Its remarkably strong in these posts, given the present circumstances.  So bravo to you you must be strong.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: leatherman on July 09, 2012, 06:11:11 pm
I'm very glad you're in care. Hang in there and it'll get better. ;) As soon as they start pumping some hiv meds into you too, a lot will change. Best wishes for a good recovery.

As this page is confidential,
um, no it's not. It's searched by google and a very public website. ;) (you might want to edit your last post some if you think people can put 2 and 2 together.)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 09, 2012, 06:18:47 pm
At Maccha.

My mum always told me "think sick, be sick" so I'm an upbeat guy. My first posts were written in panic. I laughed loads with the nurses and the boyf today, wow it hurt, but was worth it!
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 09, 2012, 06:22:43 pm
I'm very glad you're in care. Hang in there and it'll get better. ;) As soon as they start pumping some hiv meds into you too, a lot will change. Best wishes for a good recovery.
um, no it's not. It's searched by google and a very public website. ;) (you might want to edit your last post some if you think people can put 2 and 2 together.)

No one knows which hosp I'm in and thankfully I have a common/popular name; Gary. If I was a Cecil or a rupert I might be rumbled.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 09, 2012, 07:20:22 pm

I have some infections they don't know what they are, so are going to grow them (?) in blood I give tomorrow.

That's called doing a culture and is normal procedure when they're not sure what pathogen they're dealing with. It's usually bacterial infections they have to do this with. Once they know exactly what they're dealing with, they can prescribe the appropriate meds.



As this page is confidential...


I don't know where you got the idea that these forums are confidential - any member of the public with internet access can read what you write. Only members can respond, but anyone can read.

You might want to edit your post a bit if you're not comfortable with anyone being able to read about the sex thing. You have 48 hours in which to do so before the edit button becomes locked. (Only admin and mods can modify posts after the time-limit is up.)

I hope they get you sorted out soon and you start feeling better ASAP. Hang in there, and thanks for the update. Please keep them coming!

Hugs,
Ann
xxx
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: WillyWump on July 09, 2012, 10:04:30 pm

Hey there Rigger, I'm a tad late to the conversation but just wanted to wish you a hearty Get Well. Glad you are being looked after.

-Will
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: tednlou2 on July 09, 2012, 11:09:13 pm
No one is mentioning sex with the doc???  Wow!
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 10, 2012, 12:15:03 am
No one is mentioning sex with the doc???  Wow!

It's been mentioned by two of us in a round-about way, in case Gary wants to edit his posts later. :o Do you actually read people's responses?
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: tednlou2 on July 10, 2012, 12:42:13 am
It's been mentioned by two of us in a round-about way, in case Gary wants to edit his posts later. :o Do you actually read people's responses?

I saw the responses about this site not being confidential.  I guess I was just surprised no responses about a doc having sex at every visit with a patient, while other patients were waiting to be seen.  He should have been spending his time talking about care and adherence.  This just seems like a huge conflict to me, and this is the same doc still treating him.  I would wonder whether this doc has his patients' best interests at heart.  If this wasn't the same doc treating him now, then I would see why mention it now, since Gary is sick in the hospital.  But, it appears this is the same doc.  And, I would be concerned whether this doc is on his game.   
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: britchick on July 10, 2012, 05:16:14 am
rigger82

Sorry that you are going through so much right now.Sounds like you are going to get the best care.

Britchick x





Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 11, 2012, 06:11:05 pm
Hi guys.

I'm still in isolation. Still in whole body pain and feel bbq'd. So hot.

I was told it was pneumonia. Then they did scans and said I wasn't really improving. I knew I definitely wasn't feeling better. Walking or standing becoming harder and harder.

A new scan came through today (another iodine one) and they've seen white spots on my lungs and said its early pcp. Jeez. What a trip. I thought it was odd I just wasn't getting better, just felt safer.

Now I'm on some evil antibiotic that's made look pregnant and belly cramps. Pills and IV. AND STILL NO IDEA ON 3 oi's that are running about.

Seems awfully glib to say, but I'm sick and tired of feeling sick and tired. I expect good news every day from the team. It's got a little crappier every day.

And I'm bored. I know I have serious prob but boredom is rotten.

I nearly bought 50 shades of grey today on the shop trolley. It's that bad. Lol.

I think I get the lung camera in the morning. Yay.

Thanks for letting me have a moan. I know I'll be fine but can't pretend getting better is a barrel of laughs. I do have candida in the shape of a smiley face on the inside of cheek though. Serious. :0)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: WillyWump on July 11, 2012, 10:45:16 pm
I do have candida in the shape of a smiley face on the inside of cheek though. Serious. :0)

That's cute  ;) I guess if you are gonna have Candida it's nice to have it in a smiley face.

hang in there.

-Will
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 12, 2012, 07:09:00 pm
Hey G,...

Thanks for keeping us updated. A lot of people here, are concerned, and wish you a speedy recovery.

Take care of yourself, and continue keeping us updated when possible---Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: St Ives on July 12, 2012, 10:00:07 pm
You're having a really shitty time and my heart goes out to you.
Just remember that there's a lot of people who are in your corner, you're not alone.
Be strong.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 13, 2012, 06:15:03 am
All of you guys' support is great.

Got a new pill/ med prescribed. Can't remember the names except on is Ritonovir.

The other one is half blue half red.

Just returned from bronchoscopy. I can't be sedated. I had 12.5 mg of medazolam and nothing happened. Totally awake and aware. Quite an uncomfortable experience. But I got to see the white spots they wanna zap with antibiotics. They looked like cotton wool.

I'm on SO many antibiotics a day, like 12, I don't know they don't just give me a nebuliser of pentamadine.

Not allowed to eat for 2 hours but it's been 14 since I last did.

Been trying to watch pride and prejudice the last few nights, I'm asleep in 15 mins. Maybe I'll try that and when I wake up I can eat like a pig.

I may not have been put out by the medazolam but I feel mighty fine! I don't even care about that whole body pain

Thanks you guys. They want me in to aw what the new meds do so I guess about another 4 days.

Out of interest, what would this cost in the states if you didn't have health insurance? I keep wondering what the deal is with that.

Gary
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Ann on July 13, 2012, 06:32:10 am

Got a new pill/ med prescribed. Can't remember the names except on is Ritonovir.

The other one is half blue half red.


The blue/red one is atazanavir (brand name Reyataz) and the ritonavir (brand name Norvir) is a booster for the atazanavir.

You should also be taking two more meds. They may be in one big blue pill called Truvada. Truvada is a combination of tenofovir + emtricitabine.

Alternatively, you may be on another two-med combo pill called Kivexa (aka Epzicom) - it's a big yellowish one. Kivexa is a combination of abacavir + lamivudine

You can see pictures of and read information about your new meds on our Treatments (http://www.aidsmeds.com/list.shtml) pages.

I'm hoping you start seeing some improvement soon. Hang in there!

Hugs
Ann
xxx
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 13, 2012, 07:24:40 am
Yup, Ann. You're right. Truvada is a 3rd pill. But I've always taken that with Kkaletra before. I'm allergic to live kivexa.

Apparently I did not build up resistance to truvada which is great.

One of the side effects of red blue pill is insomnia. I already suffer that and take zopiclone. I hope it doesn't keep me awake. They want me in for a few days to see what these meds do to me as when I have a reaction it's quick and quite bad, like what happened with kivexa.

Feel so much better apart from this weird whole body pain. But feel great apart fro
 Fatigue.

Amazing.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: buginme2 on July 13, 2012, 11:57:54 am


Out of interest, what would this cost in the states if you didn't have health insurance? I keep wondering what the deal is with that.



Impossible to say really.  However, I had a minor surgery a couple years back.  After the surgery I got to spend a whole 2 hours in a hospital room.  I ordered room service and ate a hamburger.  Then went home.  The bill for just the hospital room (not counting the charges for the surgery and all that) was about $2000 (insurance covered it of course).


Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 13, 2012, 04:47:13 pm
@buginme2:

Wow. Stunned.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 13, 2012, 04:52:43 pm
All of you guys' support is great.



I'm on SO many antibiotics a day, like 12, I don't know they don't just give me a nebuliser of pentamadine.

 
Gary

Yep, that's  a lot of pills!   But all these antibiotics/meds, can be specific for certain infections, or bacteria. You'll be able to cut some of them in due time.


One day at a time-----Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rhaegar on July 13, 2012, 10:14:51 pm
Christ, what a nail-biting thread!  I was relieved when you posted from a taxi on the way to the hospital.  I hope you get the care you need and feel better soon, Gary!

-Kevin
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: onemoretime on July 15, 2012, 07:57:42 pm
So glad things are moving in the right direction... u are not alone...were all with you....i know what you mean about being board.   keep us updated.. i hope you feel better soon.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 15, 2012, 08:39:22 pm
Hey Gary,...

Hope your feeling a little better today. Also hope this brings a little smile to your face!

I went out jogging this morning, and all these hotties started following me.  ;)


Wishing you the best !




(http://i1047.photobucket.com/albums/b473/exrrje/It20sux20to20lose20bet.jpg)[/img]
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: klassykitty on July 16, 2012, 12:47:52 am
Rigger,

I was in the  hospital for 3 days, and had a bill of almost $20,000.  I didn't have near the problems you are having, but it could easily be $50,000 or so. Here in the states they charge for everything in the hospital, (even the little pink puke dishpan).

I was lucky and had most of my bill paid under medicaid.

Hope you feel better soon. 

Michelle  8)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 16, 2012, 02:02:58 pm
Hey Rigger I'm glad youre being taken care of. Hopefully youll be a little better by the end of the week.

What about your psychosis? What is the doctor's plan to stop you from suffering from similar crisis again? Pretty please do not throw your meds out anymore ever again :)
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: spacebarsux on July 16, 2012, 03:08:06 pm
Hi Rigger. How are you now? Lots of us thinking about you.

Hugs
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 18, 2012, 06:06:17 pm
Hey guys.

I'm still in hosp. Having over 20 pills a day. Sometimes more. They are really hurting my stomach.

Clindomycin (16)
Tramaquine? (4)
Metroclopromide (4)
Fluconazole (2)
Ritonavir (1)
Truvada (1)
Red/blue ARV (1)
Risperidone (1)
Valium (2)
Zopiclone (1)

Guess that makes more than 20. Feel like a chemical spill. Shrinks and docs all day. I was quite upbeat but had a cry today and don't know why.

Bit sick and tired of being sick and tired. It's kind of a mental struggle even though all you have to do is swallow pills.

Just a down day. The nurses said everybody gets them. So I sat in the chapel for about 3 hours. Had confession whilst here. Not even particularly religious. Plastic catholic. Xmas and Easter kinda guy. But when you're quite ill you turn to funny places.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Jeff G on July 18, 2012, 06:11:13 pm
It may not feel like it now but it does get better . I'm wishing you the best and hoping those better days come along soon for you .
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 19, 2012, 01:22:00 am


It's good to hear from you Gary.  Hang in there !  I've said it before I'll say it again, you have a lot of people here, that are supporting you, and wishing you a fast recovery.

Post when you can, we care about you !!

Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 19, 2012, 10:24:44 am
But Gary what are the doctors telling you? Any prognosis? Do they tell you how long they plan on keeping you in the hospital? Is there none so far?
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: newt on July 19, 2012, 07:47:31 pm
No doc is gonna offer a prognosis in this serious situation. They will have seen good and bad outcomes.

HIV care in London is the best in the world, and I have seen worse situations come good.

Good luck rigger, passage of time is a healer and the best guide to the future.

- mattt
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 20, 2012, 03:12:07 pm
Hi Guys.

I'm home! Still have a massive regime of pills and feel pretty sluggish.

The PCP anti-biotics are a big regime and give you a sore belly etc.

Still tired and getting used to my ARVs but happy to be home.

I started ARVs on saturday and I now am the proud owner of 52 CD4.

My body hadn't become resistant to Truvada, which is what i took before, but % is still 3.

The clindamycin seems a bit excessive to me, but i'll take them all. PCP is no fun, quite scary and it hurts - along with all the funky tests they have to perform.

All in all I only spent 11-12 days in hosp. I stupidly did think i'd get a pill or an hour on a nebulisor and go home. Silly.

Even though i wasn't in my right mind (they've adjusted those meds now too) I would really strongly advise nobody to EVER just stop their meds. Way too much drama and hurt ................. and recovery.

Great support from you guys though, I really was gonna wait another 30 hours to see my doc at my appointment. Would've been a huge mistake.

Thanks to you guys for making me see how serious some symptoms can turn out to be, so quickly too.

Gary/Rigger
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: buginme2 on July 20, 2012, 03:14:24 pm
Congratulations!! Be Well
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Common_ground on July 20, 2012, 03:29:00 pm
Great news Gary! :)

Now stay onshore will ya :p
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on July 20, 2012, 03:30:11 pm


That's great news Gary !  Unless you have any dietary restrictions, with any of the medications that you are on, you might try some yogurt products. This may help to settle the stomach, plus it supplies the good bacteria needed, during antibiotic use.

Try to keep your nutrition up.



Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: newt on July 20, 2012, 03:53:47 pm
Very good

50 CD4s are a very good start back towards the safe level of 200.

Sleep well and restful dreams.

- matt
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 20, 2012, 04:19:18 pm
My dreams have been ok, but sleep a little difficult.

Has anyone noticed PCP treatment of cindamycin(16 a day) and Primaquine makes you ratty and irritable or is that just me feeling generally a bit rough?

Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: britchick on July 21, 2012, 03:27:27 am
 Hi rigger82!

Glad to hear that  you are back at home.... I had PCP too earlier this year......not great fun!Was given septrin and still on it.

Im crabbit anyway with or without the meds!!!!!!!!!!!

Rest up and those numbers will be  even better in no time.

Britchickx
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: onemoretime on July 21, 2012, 01:15:28 pm
Hey Rigger!!

So glad you are home.  thank you for going to the hospital that day.  You really scared me if you were staying home another day.  I thought we would never see a post from you again.  I was so thrilled to see you post from the hospital and get great care.  I have thought about you for 2 weeks every day.  I have been exercising walking and light lifting on cybex machines and bike with back support as i have ruptured discs. eating a lot.  feeling generally feeling stronger.  got labs drawn Tuesday, hoping to see an improvement.  I know i am less anemic.  My cd4 was 151 last month.  VL und for 7 years but HCV treatment with Incivic kicked my but for a year and destroyed my CBC levels and CD4. 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 22, 2012, 06:26:24 pm
Now at home, I'm meant to take 16 clindamycin a day. I have been doing this for about 11 days.

I noticed my belly getting bigger and bigger and a slight rash and hard to swallow.

Today was so swollen I look full term. I stopped the last two doses and I can swallow easier and rock hard stomach has gone back to normal. I also have been waking up with a start.

I know I need them, but they are in my system and my first stop tomorrow is my doc. I had this reaction to prezista once.

Body is absolutely cool with ARVs though, which is handy. I have always had probs with antibiotics, but not like this one. Yuck.

ANYBODY had good/bad/no effect from this pill? If I was severely allergic I should know by now, no. Had 16 a day for roughly 2 weeks.

Don't like azithromycin but prefer it to this.

Any help from you guys would be great. This place is my life line. Seriously.

I wouldn't have gone to ER if it wasn't for you guys.


Any info on this is good info

Gary x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 22, 2012, 09:22:01 pm
Gary, even though you are still under risk and taking several pills and everything, you are a living proof that people can get to 0 CD4 (which is quite a scary thought) and still bounce back from that. Do you realize how many people will read this thread, from here on now, and realize that even when they find themselves in an awful, seemingly-hopeless situation health-wise, there's still hope?

So I say thank you for reporting your entire situation in this forum. I`m very glad that you are feeling a little better and I have faith you'll be even better a week from now.

Thinking about you Gary. Much love and positive thoughts.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 23, 2012, 12:37:52 am
I never thought I would be a source of help, just a guy in need of help and advice..

I've just woken (about an hour ago) with a night terror.. Didn't know who I was, still not clear on why I exisist.  Mum filled in all the gaps.

I roughly know I'm me. So hard to explain. Had only been asleep for 2 hours. Woke up being sick thinking 2 girls had sent me on a mission.

Way too many chems. Gonna ring doc at 9 am and get rid of these clindamycin. Had nothing but hell.

I may be alive but I sometimes do not know who I am.  I leave letters around the flat

Shit.  My body like ARVs that I'm on though, can't handle anti biotic

Forgetting why I'm here now but thank you, I think

Gary x
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: mikeyb39 on July 23, 2012, 12:51:09 am
hi Riggers,
i'm still thinking about you.  i hope you get much much better soon and back to some normalcy, which im sure you will.   Allow yourself some good rest and let the docs do their things
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: rigger82 on July 23, 2012, 12:55:07 am
Thanks.

My body will repair. I.m sure. Already after 2 weeks I have 50 cd4 and all my skin rashes have cleared up.

Stopped clindamycin. Breaking my body and head.

I want a new mind.
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Rockin on July 23, 2012, 11:27:08 am
Gary are you under psychiatric help as well? I think at this moment you need to heal both your body and your mind and usually doctors don't know to handle mental problems. 

Can they prescribe you a Benzo maybe? You are probably very anxious right now and taking a benzodiazepine might help, I just don't know if you can take it along with your other medicines. 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: Mishma on July 23, 2012, 08:58:46 pm
Great advice from this forums "pros," that I won't repeat. I skimmed the responses so I may have missed someone bringing up the fact that there is great redundancy built into are immune systems and that CD4 cells aren't your only line of defense. I think of them as the quarterbacks of the immune response. You can win games without them but it is easier with them. Sounds like you are on the road to recovery.

Psychotic breaks are scary-someone close to me had one a few years ago and tried to take her life. 8 ECTs latter and 6 months of counseling and an antidepressant and she's back on top of her game. I spent a week in the psych ward myself for a major depression after coming off years of predisone. Mental illness is treatable. Look at the meds I'm on. 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: J.R.E. on August 11, 2012, 08:03:03 am
Hello Gary,


I haven't seen you logged in for a while.  Just wondering how everything is going for you.


Ray
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: LiveWithIt on August 11, 2012, 12:29:29 pm
Of course it was silly. I was not in my right mind at the time. I was having a schizo/psychotic episode that lasted for a long time and I was sectioned.

Thanks for your wishes of luck  ;)

Yes, you can come back and feel better and eventually build your immune system and be healthy again. Also take your psyche meds and try to fight or ignore any future voices in your head that tell you to do something harmful. 
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: carlydavids on August 14, 2012, 06:49:00 pm
It's totally do-able, don't worry :) My husband was super low and bounced back super fast. It's the numbers that freak everyone out, we'd all be better off not knowing them and just letting the docs take care of that. it doesn't help anyone knowing that stuff. "See HIV AIDS as your motivator for change! It's not your jailor, it is your liberator. When you can see this, healing can begin" - AIDS to life, I quote this book because it documents the journey of a man on the brink of death with AIDS and rebounded back amazingly. It goes on to give all the techniques he did to help maximize his healing. Turns out it's mainly the emotional stress that comes from AIDS that is the big killer. Very insightful.

I send all my thoughts to your regaining health. You can do it! Believe :)

Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: CraigMKE on August 19, 2012, 04:58:19 pm
I am certainly not downplaying the need for meds and the need to get on them ASAP.

BUT

A trip to the ER?  Staying in the house?

I started my diagnosis with 7, which in lab talk is basically ZERO

There is nothing to say someone will get sick by going out and enjoying the world. I have no idea how long I was that low when I was diagnosed. My CD 4 is still only 60 after 10 years of meds. Should I have been cooped up all that time?
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: leatherman on August 19, 2012, 08:23:10 pm
My CD 4 is still only 60 after 10 years of meds. Should I have been cooped up all that time?
wow. that's really unbelievable** - and scary!

Personally, for several years (as in 4 yrs) I lived like a hermit and ran out of the grocery store if someone sneezed or coughed while my cd4s were under 150. So yes, I stayed cooped up and I would suggest the same to anyone under 100  ;)




**
Since Diagnosis I have never been above 250 (4.75 years).  I quit looking forward to my numbers rising sometime ago.
....
Results:  White blood count dropped (Don't have the figures), Dr. does not seemed worried.
CD4 = 215 (no big deal, I didn't expect anything else)
Anyone else start as low as I (CD4=7) and still not up to cd4=300 (after 4 1/2 years of HAART)

Just got back from the ID Dr.  My recent labs show a 100 point drop in CD4's, down to 150.  Have not been this low in 6 years.
When I was diagnosed I had a cd4 of 7. 8-10 years later (I can't remember my diagnosed year). I am at 64 as of my labs last week. The most they have been is 150 or so.
I'm sorry but I'm reading something very different and very odd in your posts. According to them, you have been up to at least 215 and you speak as if they been in a 250-300 range at some point. So you have had higher than 60 cd4s in your 10 yrs of meds. However, it's quite worrisome to read that in the last bit of time your cd4s have been falling and have gotten as low again as 64. What has your doctor suggested to do dealing with this dangerous trend? Have you already changed meds? Are you even staying adherent?

There's obviously a lot more to your story than "My CD 4 is still only 60 after 10 years of meds".
Title: Re: Had a break down. Now have ZERO CD4 and 3%
Post by: CraigMKE on August 20, 2012, 09:00:24 am
Those were from years ago. Like I said I am at 60.

No story to tell