With the new year, thot I'd start a new thread since some of us are affected by HIV, dealing with the aftereffects of CSA plus a physically-debilitating disease. And, no, this one doesn't directly involve shingles, but y'all were terrific support over the 3-month course of my second bout. (The Gabapentin takes care of the worst of the neuropathy but is like a damn sleeping pill).
As relates to CSA, the connection is pretty simple: Subsequent to my abuse as a teenager by my high school guidance counselor, my adolescent mind concluded that, if I wasn't worthy of respect by adopted custodial parents or anyone else, my best value (which would at least earn me the appearance of intimacy) was as a sexual object. This continued into adulthood, with even my father's pastor attempting to seduce me the night Dad died. Yeah, is that one sick SOB or what?
I've been poz for over 20 years. I've dealt with long term clincal depression, a couple suicide attempts and was diagnosed with PTSD in the past year.
Via my T and a doctor to whom he referred me on shingles treatment, I was directed to an HIV/meds study. They were finally able to obtain their "kits" from the pharmaceutical company this month. I just had my first draw, urinalysis and EKG yesterday. Results will trickle in for the next 2½ weeks, primarily determining HIV genome.
I think it's likely I'll be accepted. Otherwise this will be a short thread. What it means is that I'd have access to advanced HIV med treatment worth tens of thousands of dollars and detailed testing worth thousands for at least the next couple of years, possibly longer. As I've examined my journals the first ten years of HIV, I was pretty shocked to discover just how prevalent the extreme fatigue has been since the beginning. I'm hoping I eventually have a comparable experience to those enrolled in related studies on similar meds who actually start to feel normal. It would be life-changing for me and I'd like to chronicle it here for my brothers similarly affected.
The month long wait for the "kits" was frustrating. I wanted to get this underway. Though I'm not terribly concerned about the profile of my particular HIV genome, it will nevertheless determine my eligibility. That's out of my hands for 2½ weeks. Potentially more worrisome is my reaction to the medication: whether I'll be throwing up every morning and/or if I'll develop disfiguring lipodystrophy ("buffalo hump"). In short, I'm not looking for suggestions been there, done that and survived without 'em - as I'm looking for a place to vent from time to time.
And, well, there's my warped signature humor that's gotten me thru other issues. I'd say you have no idea how much it helps, but you DO know. To wit and to start, I'll recycle the blood draw vid...and that should start the fun (I'm counting on your equally-insensitive contributions Pero, Gary, Lee and all!):
I know a lot about Gabapentin. I've had some strange experiences after taking my pills, especially if on an empty stomach. vertigo, sea sickness like feeling etc.
when I first began taking it the doctor told me I needed to get used to it. That took a month! Quadruple vision, spinning room, etc. It's been helpful for killing that tiny sharp needle foot asleep type nerve pain 24/7!
I am HIV negative last time I was checked. I've been foot dragging when it comes to getting tested for HIV again. I need to go soon.
Good for you landing this new test! I hope it turns out to be a magic bullet! In the meanwhile I'm sending healing vibes your way...
Hey, Human, welcome to the HIV asylum, so to speak, and thanks for the compliment (I have spel chek).
I was a little weird starting the Gaba a month ago myself. Some MS folk will attest to that!. But I'm okay on 300mg at bedtime and it's pretty much nixed the need for any painkillers otherwise, which is a huge relief. I'm impressed with it.
Foot dragging is an interesting term to use Human. Since my shingles was my right leg, one of the guys christened me "Pizza Leg." Oh, you're our kinda guy! Quad vision? Wow. That's really kewl! (PM me anytime if you're concerned about the HIV test, btw...glad to hold your hand on it).
And, Gary, always coming thru! I'd prefer "Elephant Man" if I could have the one w/Cher, however. ;-P HOW did you miss that? I will definitely email Epix Drive-In and suggest they add you're "Came From Within" title to their lineup. Naturally you've forced me to invoke Carrie Fisher:
Try 400mg 7xs daily, thanks to a botched back surgery, gah! It took a long long time to find my Gaba rhythm, but I feel it was worth it. If only we could fix the spine more easily We can all hope and dream...
I dunno why, Jude, but she's my All Time Fave. If Turner Classic has a Bette Davis night, everything comes to a screeching, immediate halt here (probably a good reason to invest in the DVR this year, huh?).
Dunno that it's luck, but as I've mentioned, dealing with CSA got me a good T I could afford, a doc I like and now the study. Guess that's why I'm pretty calm about the whole thing...hell, didn't even pass out during the draw. Whassup w/that?
Should be interesting to post the numbers. Y'all are gonna have fun w/that. I'll have to pull out my old HIV jokes, like naming each of my T-cells.
As far as Mel Brooks, Gary, we're more like the below and after so many years here about the only thing I AM immune to....
Whaaaat? They didn't get Madonna to do it? Almost started boppin' on top of the desk here.
Timing's perfect Jude. And I'll just lay it all out. Not particularly anxious to be spilling my guts, but I need to. (I guess the closest thing to Pizza Leg would be that I feel like a walking petri dish).
Found out about the study in early Dec. Draw wasn't until end of the year and I should have the results this coming week. Seven weeks. Shit.
I've been okay with it, but it's started to drive me nuts the past week. In talking with the T I've concluded the shingles and 15 lb. drop in the past year - biggest overall physical decline in 20 years - again drove home I'm not in VG shape. I dunno, perhaps psychogenic, but the fatigue has been really bad the past month. Seems like I'm up a few hours, then crashed a few hours. Eating - this is a new one for me - is because I have to, not because I want to. I know to keep that up along with existing meds.
Nor do I know what to expect from the numbers, but my frame of mind/physical feeling right now is such that I expect them to be pretty bad. On the other hand, simply, I don't know.
Getting in the study, from anecdotal evidence of a similar previous study, could radically change my life the next few years. Hell, guys, light candles, send up balloons, whatever.
This is one of those vent posts I have to do from time to time. Head's not in a good place - why I appreciated the Hadassah musical so much. I actually consciously considered I may simply need to get with a friend of mine to have a good cry and get it outta my system.
(Lest you think my sense of humor's gone out with the trash, I have to ask where the hot "Gray's Anatomy" interns are in the video)
I'll call this a victory, I actually feel normal for the first time, in what, a week? Ten days? And I don't even have the results yet!
Short version is that I took the Gabapentin as usual before bed (just predawn because of a project), but then didn't get to go to bed because a couple clients got very early Monday starts on their minds. So I was functioning while, shall we say, impaired. Have never stayed up after taking the Gaba before. Sheesh!
Well, yeah, that single 300mg kicked my ass. Obviously, in the future, I need to make sure I'm flat on my back in bed before I take it. The whole thing was too weird.
As relates to the CSA - you knew this was coming - this is telling.
During the home abuse and the years following the CSA, I soldiered on. Some perhaps suspected something wasn't quite right with me, but I seemed to be functioning. The HIV is very similar. Except this is a case in which I've actually been able to quantify it.
And, well, here I go with vindication again. A couple people who aren't terribly familiar with HIV were shocked when they heard the results. I've appreciated being treated normally by them, but I've also made it clear I often feel weak. I don't think it had really sunk in. I hope they don't start treating me differently now - especially since I'm starting the advanced meds, that would be an irony.
I don't like to admit this, but I've also some resentment towards those who hadn't taken me seriously. Some of it's my doing out of a lifetime of habit, trying to look/act normal when I've felt like crap and/or only been able to function a few hours at a time. I guess in some cases I've made light of it because I don't want to deal with others' denial (i.e., "oh, you're just having a down day" or "you look phine to me"). Often, it's just to help MY frame of mind...which would be shit otherwise. If anything, I've got my own baseline, if you will, on exactly how much effort it's really required.
I mean, hell, a CD4 count below 200 plus any of a specific list of infections indicates AIDS. Well, I'm at 46 and the infections have been coming with increasing frequency over the past year, though they'd not progressed to the specific CDC-approved list, "just" related infections. I've been managing the symptoms best I can without insurance...and, honestly, no desire to invoke a public health system (been there, done that...and I'm a piece of meat to them, if I've been lucky) which would stress me out more.
That's my rant.
Suppose I should be doing a Celia Cruz thing. But after so many disappointments I'm just relieved.
Thanks Gary. I may be making a few long posts as I digest this. Having dealt with a bunch of disappointments the past 20 years on this, I haven't been willing to "Celia Cruz" (gawd, I love her) until I had some numbers...and it took two months from inquiry to acceptance. Even now, I'm not excited. Just relieved.
Any excitement is tempered by the conditions of the protocol. Meds taken same time of day, EVERY day, with food. No, "oops, I missed a day." Frequent testing will immediately indicate if I'm noncompliant, as they put it, and that's the end of it. Period. Nor do I know, though bad reactions are infrequent, how my body will react to it. If I'm worshipping at the Porcelain God every day that's gonna be a deal-killer.
However, I'm starting to consider, when/if the out-of-town church litigation begins, I might actually be able to handle it. As far as work, I might actually be able to handle longer assignments.
One thing I HAVE learned, however, is to take it at my own pace. Screw other people's expectations ("Okay, so you're 'cured' now?"). Gawd, gimme a fucking break. Ultimate irony: there are reports that as the immune system starts to work again, some actually become sick more often initially because their bodies are finally reacting to ward off infection. I'll call it Mother Nature's Mind Fuck.
Gawd, tens of thousands of dollars worth of medication and I'm posting Chiffon Margarine?
Ah, Gary, I'm sure we can find little nano-size number tags for your nose hairs. Whaddyathink?
There's a Southern saying that describes him: "You jus' ain't right." A very kewl guy.
Fasting overnight, more blood letting and pissing in the morning then the meds start. I was gonna tell them to expect an emaciated body delivered by ambulance and then they could suck out the last of my bodily fluids.
NOT MY BLOOD! NOT MY BLOOD! We're the Resistance! We can go underground! (Yeah, I know it's friggin' Cruise, but I was desperate for material)
Here 'tis...Today was Lab Rat Day! Fasting and water overnight, three cups of urine (only needed two and actually did FOUR...I'm such a race horse)
PLUS 6-8 blood vials (wasn't in the mood to count while my arm was being drained - I even watched for a while before the room started to spin - but my RN was cheerfully quoting lyrics from "The Fantasticks"...he's too much and, listening to this thing I know why I've always had an aversion to Broadway anything).
Details: Two bottles of pills (one real, one placebo), conveniently in two colors in case I spill 'em all over the floor. For now, taken in the morning with a Pop Tart or something (haven't done those in years), two hours before or after any other meds. May do additional Calcium/Vitamin D supplement as this may affect bone density.
Two more draws in the next month. Will be very interested to see how bad the fasting numbers were. The last numbers were highly entertaining! And have an official-looking card ("I'm a lab rat for a major pharmaceutical company. Handle with care"...jk) to carry in my wallet in case the Waste Management truck runs me over.
Yeah, it's been a lot the past couple months. Celebrated on the way home with a BK Whopper (w/cheese!). Haven't done THAT in years either. Then I was home and crashed for four hours...hey, I'd already slept well eight hours last nite. I think that was a good indication of the anxiety I'd had about whether I'd even get into the study. Just relieved to be on my way and feel like I might actualy do ok with all this. Haven't even thrown up yet ;-)
Edited by Lancer (02/01/1310:16 PM) Edit Reason: Race horse vid was GROSS
I'm gonna briefly glom on something that's been on my mind about CSA, regrets and how I got here with the HIV.
My recovery, particularly ACoA, was going very well, I had a very good rep in my industry (despite no degree in a city full of them) and a gentle giant boyfriend with a brain the size of a planet. When Dad died, it turned things upside down. I moved to be back where I felt his presence (deal with my grief)...and LDRs rarely work.
Hooked up with a poz hottie for three years - a codependent, destructive relationship - and all the sex we could handle. So, yeah, when I'm on this meds thing, my mind sometimes wanders towards what could have been with the gentle giant. Seattle and the commercial aviation industry would have been perfect for me...and, go figure, it had been one of Dad's favorite cities.
I suppose all the more reason to keep a quote from my cousin in mind he gave me Saturday: Life isn't about filling the holes, it's about living with them. There are times I really hate that saying.
Nor was it all bad. This city and environment are 100% me.
In some sense, I feel I've been given another chance to make better choices. Until now, I haven't felt as if I've had the physical energy to do it. And, after 20 years of this, I'm wondering what that will feel like. I'm starting to let myself feel excited and cautiously optimistic. When/if there are tangible changes that will bring it home.
Day Three, btw, and I'm not having any dramatic physical side effects (throwing up, spasms, etc.). I'm So Disappointed. Maybe they're BOTH placebos! Maybe they're laced with cyanide! Maybe Melancholia WILL hit the Earth! (This is a great movie, btw, if you're in the full throes of a major depressive episode).
Day Five...Not sure yet if it's a side effect or my up-down cycle, but I've noticed I've been depressed/OCD (more O than C) the past couple of days, as in I have difficulty doing my normal tasks. It could be lots of things, but I'll just make note of it until the next draw on the 12th.
fwiw, found a new pill box - after 20 years! - with each compartment in a rainbow color. Might perk me up. Strange, I know, but little things like that do.
I like your taste in music Pero. What sometimes drives me nuts is that I'm ridiculously compliant on my meds and there are still times it doesn't help. If I go easier on myself, I did, after all, just start a new, particularly potent regimine (for which depression has been noted as a possible side effect), and, if this is another effect, added a Vitamin D/Calcium pill recommended to counteract bone density effects.
Loc: South-East Europe
Hang on Lance, there are such days when we can't do anything to make our self feeling better... Not sure would you like this song also, but I like it a lot. It just says: I' ll Go Crazy If I Don't Go Crazy Tonight
Talked at length today with a friend about it. ("You don't look good," "Gee, thanks," "What are friends for?") I'm pretty clear that it's the meds (on top of existing stuff) that probably affect my mood/functioning and I'll just ride it out.
Projectile vomiting would have been more entertaining - especially for Kitty, who'd be fascinated if Daddy had a hairball - but I don't have a lot of control over this...
Not any better on the side effects today, if that's what it is. Considering my lifelong struggle with depression, I'm not sure. Difference is that there's not even a hint of that winding road of hopelessness.
I checked this med out in other online forums. Most common side effects are none, neausea and farts. None of the above.
I'm used to riding out depressive episodes, if any consolation. But - aw crap - this is really starting to bother me. For now, I'll just keep posting to get it off my chest.
Okeydokey, third draw today. Got a Snoopy BandAid, btw! Results are in from the baseline (fasting) draw. I'm happy to report these are My Worst Results Ever (worse than even the prequalification draw):
VL: 87100 CD4: 33/2.5% (Normal is about 40%. I think we lost Larry and Moe since the last time, a quote from the study admin. Despite my smartass comments, I have to admit the pctg is the first time I've been scared in a while)
Conclusion: Obviously it's the Diet Coke that's been keeping me alive all these years. I can therefore reliably report Coke Adds Life.
I've really felt no particular change after only a couple weeks, Pero. I won't have any numbers results until the end of the month on what if anything has changed/is changing. As much as - now that I'm digesting it - that CD4 pctg is giving me a scare, I have to remind myself that my general guage all these years has been how I feel, not numbers.
Latin phraseology aside, I'm gonna get serious for a moment and vent some via train of thot.
I'm not noticing any side effects except perhaps some additional fatigue. One of you guys asked about the lawn, considering I could only cut half of it a few weeks ago before having to quit. This week I managed the whole thing, albeit with a break between doing the front and the back. It's frustrating as hell. I tell myself, "...but I should be able to do this! [like normal people]"
I know there's a mind-body connection. As I've digested it, the baseline numbers were more of a shock than I expected. Go figure I glommed on Pedro Zamora's CD4 being the same as mine just before he died, tho' in '94. And ran across a 2012 article citing a study indicating that those who started HAART with a CD4 <100 had a considerably shorter life expectancy than those who started at >350. At my 50-something age, I rationalize, it probably doesn't make a difference.
But, between the lack of stamina, a few nasty (but treatable) infections and The Dreaded Numbers, my head's not in a good place on this subject. I got really sick in '01 and, given my 5-7 year prognosis in '93, kinda figured that was it. I'm feeling similarly now...sometimes worse.
I'm still functioning. The work/home basics are getting done. I don't have that emaciated, bug-eyed "sick" look (mygawd yes, I wouldn't be a model fag if I wasn't vain as hell). Sense of humor's mostly intact. But I still feel like I'm in decline.
I suspended the new T search - another thread entirely. And a lot of you know I've made some remarkable progress reconnecting with some empathetic family members...all without a T. But I'm reconsidering one guy who, though not familiar with CAPS (PTSD) evaluations, seemed to have a good, particularly responsive manner and specialized in HIV.
That's about it on the vent. Next bloodletting/results Tues. I think any indication of improvement would start to help my head a lot.
Thank YOU Pero. Have been on an acylovir prophylactic since the shingles - which has had at least some effect on other stuff - and Bactrim when/if I need it to block pneumonia. I'm just out of sorts at the moment and this is a good place to vent.
"Your numbers indicate a damaged immune system..." LOLOLOL...y'think? <---back to being a smartass When I read that I thot, well, it's not like having a flat tire. It's more like I'm running on the rims.
Loc: South-East Europe
Hey Lancer, lol, sorry for my remark related to immune system, I wanted to say that numbers could be additionally lowered because of other health issues that you've had recently. To be honest I'm trying hardly to educate self in this matter which is completely new for me, lol, so I'm far far from being smart-ass, lol.
We will find you some great tires, even that Mercedes looks very stable there, only that I don't like is black color
Got new results! (Enuf of the Pope hijacking the thread, tho' it's my own fault I suppose). A couple days late for the Oscars, but here's the numbers on two weeks' treatment. I just about had a cardiac and I suppose a doctor's office is as good a place as any. I'll settle for a good cry later. I was told the results were often dramatic, but didn't expect this:
Viral Load 113 (not a typo, down from 87,100) CD4 83 (up fr 33) CD4 pctg 4.6 (up fr 2.5)
Next regular bloodletting in a month (however, with the 8-hour bloodletting marathon sometime in between). They expect the results from today's draw to indicate I'm undetectable.
Thanks Gecko! One reason I keep the thread going is to maintain my sanity. The other is education for survivors affected by HIV. One reason I got here was, following the CSA, my adolescent mind figured my only value was as a sex object and I carried that with me for years.
Lymphocites are white blood cells and they fight off infection. CD4 cells are lymphocites that initiate the immune response in other cells (CD8). Roughly, if the alarm system (CD4) is knocked out, no 911 call goes out to the police (CD8). Or, no immune response to infection.
CD4 count is typically 500-1600. CD4% is the percentage of lymphocites that are CD4 cells, typically about 40%.
Viral load is a measurement of HIV copies in blood, if you will, the number of bad guys. Obviously, the fewer, the better. "Undetectable" doesn't mean there's no HIV. It's just the limitations of the test (currently about 50 copies). And it can remain hidden in the lymphatic system, brain, etc. Two good reasons to maintain consistent HAART (highly active antiretroviral) therapy.
Treatment has significantly reduced the number of bad guys. In my case - can't resist math - for every 770 attackers, only one is left...and that's why I was in total shock at the results. The alarm system will naturally start to be fixed (mitosis, if you remember high school biology), communicaton is being restored, and the police team will be able to respond to threats normally. That takes a while, at minimum a year.
Edited by Lancer (03/04/1312:50 PM) Edit Reason: More accurate CD4 analogy!
Loc: South-East Europe
(((Lancer))), even we said that numbers are just numbers I'm more than happy seeing your latest results. Congratulations on being undetectable, I'm sure you are there already And lets hope for further rise of CD4 and percentage
I must say that trough this topic I've been very well educated about HIV.
Though I'm pretty much staying off the boards this month, I've reached the one-month point on the new meds and some observations. Yeppers, gonna ramble for the record:
First, the initial additional fatigue seems to have passed. I still get tired, but it feels like I've rolled back the clock several months. It's not as difficult to get things done. Air dam and tires on my 13-year-old Wundercar needed to be replaced. That's actually getting done! I'll enjoy driving again. For that matter, heck, I just trimmed the walk and pruned some bushes not all of them yet and, for once, didn't feel like I needed a break every 15-20 minutes. Yard stuff is important to me.
The comparison I draw is my step-brother who had a severe skiing accident in college. He was in hospital traction for a year and then spent another year learning to walk again on a mostly atrophied leg. That's what this recovery feels like.
I'll get the griping outta the way. I've been reluctant to reveal to people how weak and sick I've really felt. Few people know, for example, I need about 12 hours' rest a day and I'm only good for 4-6 hours' activity at a time. I've done my own minimizing to hide my disability. It's been a real bitch sometimes showering, shaving, getting a haircut, even had to ask a teenager what he's used for acne (Oxy, btw) but, yeah, I have an ego. Downside is that many people don't know how sick I've been...brave face and all that. My worst nightmare has been to see myself as so many friends have been over the years, emaciated and hollow eyes. So I've fought it. I guess I shouldn't be surprised people have therefore been relatively unconcerned about me. I only gave out anecdotal evidence, but few visual clues except to those with whom I'm really close. I want to be treated normally, not like a leper. I'm still processing this.
My only other gripe is, "Oh, so now you're cured?" No, I'm improving. This is gonna take a while. I guess I have no control over others' reactions, but I'm hesitant to really share what a huge change I've been feeling compared to a month ago. After years of feeling lousy, significant parts of my day now feel normal. The constant aches are subsiding. Again, it's not unlike what my step-brother must have felt. "I can walk now?" Well, yeah, but not very fast. "That's okay. Hell, I can walk!"
Nor do I suppose I should be surprised at my hindsight. But I am. And it's not unlike the perspective a lot of us get about how outrageous the fact of our CSA was and/or whatever other abuse accompanied it. Same kinda slap-in-the-face moment.
In the past few years I've had a couple cases of shingles (scars look like KS lesions...ugh...like I need that), fought constant sinus infections, fought fungal infections. Most noticeably, the fungal infections now appear to me to be receding. I'm actually starting to feel like this stuff is going to heal up. More surprising to me though I've always gone by how I feel vs. what the numbers day is just how bad the baseline numbers were. Though the CD4 absolute count is kinda 20th century and the preferred indicator is now CD4 percentage, the baseline numbers were awful. CD4 of 33 (normal 500-1600), CD4% of 2.6% (normal about 40%)...and a viral load of 87,100 (doctors freak out when you approach 100,000). I suppose I was as close to AIDS as one can get without meeting the specific CDC definition. That realization kinda threw me.
The viral load, for all purposes, is now undetectable. I'm keeping my expectations in check because it will take a while for the CD4 to recover, particularly from a baseline that low. Clinicians usually prefer to see a baseline of around 200-350 for best results.
I don't know if it was gruesome fascination or what. In the past month I examined morbidity studies for people with similar numbers, infections. I'll just say it sounded like, if I'd not been able to do the protocol, I'd have continued in a pretty rapid decline. I'm not afraid of dying at all. I'm afraid of what leads up to it (hospitals, tubes, pain, loss of independence). And I'd really miss those things about my life I've come to enjoy...my home, my craft, my hobbies, etc. Given my experience with Dad's passing years ago, however, I've come to feel the human connections don't get severed, they simply change.
This will be (relatively) short. A call this morning that The Marathon Draws are scheduled for Wed-Thurs. It's gonna try my patience w/accessories such as needles and catheters. They follow me for 24 hours to see how the meds absorb into my system.
I'm only "tied down" so to speak for four hours, then incremental draws into Wed evening. Something like half a dozen total. Last draw Thurs morning.
Wardrobe suggestions welcomed. Blood donations welcomed. I'll be down a quart.
Just for you Pero! Butterfly installed @ 0745, first draw @0800, a little Starbucks brekkie (included), and draws every 15 mins for now.
These things aren't too bad. I could hear my arteries clogging as I ate it.
Only annoying thing is the water injection (cold) after every draw. At least they could inject something carbonated like Diet Coke (bubbles tickle). Seems I may be stuck here until 1600, then back at 2000.
What a lovely morning (at least here in the States). The draws are now down to hourly - kinda lost count how many - I have the lappy, even had a li'l nap, comfortable recliner...and no leaks from the butterfly stent!
imo, this is far more interesting than white or black smoke...though they offered me a priest. You can imagine MY answer.
One more draw in a few, then a two-hour break (goin' fer groceries...with the stent!), another draw, a four-hour break, evening draw, then one in the morning. Nice to know I'm wanted for SOMETHING...tho' blood wasn't quite what I had in mind.
Well now, THAT'S messy and unattractive!!!!! (Besides, the stent makes it MUCH more tasteful and discreet...except in the check out line)
Stent's out for the night. I'm in for the night. One more draw at 8am. Hope y'all enjoyed the play-by-play. Gave me something to do while waiting on the cardinals. Okay. I'll say it. I DO feel drained. Seems to me they took A LOT of blood (something like 40 tubes).
btw, updated numbers from the draw two weeks ago: Viral Load: undetectable (less than 20 copies...more sensitive assay) CD4 - 97 (obviously this is gonna take a while to rebuild) CD4% - 4.9%
fwiw, lately I've usually been feeling - except for today - like my physical clock has rolled back a year. Jury's out. May be partially psychogenic. I'll see if it holds up. I think it might. I have to go pass out for lack of blood now........
Thnx Pero. Just had the last draw...the other arm. First one's exhausted. Haven't figgur'd out my day. No blood left to the brain which may be a good thing. No possibility of stroke if there's no blood there to begin with! ;-)
Golly, I'm so experienced, maybe Red Cross will let me donate now. Whaddya think? No? Oh well.
UPDATE: figgur'd out my day. Brought out the chainsaw. No, not with a hockey mask.
That's exactly what my musclebound doc said when I had my first case of shingles a few years ago. lol...then my self-medicating doc died from an overabundance of steroid use. I think I'm channeling George Burns who said his doc told him cigars would kill him. Then his doctor died.
After the chainsaw, spent the weekend working on Das Wundercar...but actually dialed down the frenetic pace. Feeling good is weird.
Had my latest regular draw Tues. A four-tube quickie, not the marathon I did a couple weeks ago. Since I already had results at that time, I won't see these results for another month. Yeppers, I've now graduated to monthly draws.
I still feel pretty good, but mostly took last weekend off from the frenetic pace. Yeah, I was finally getting tired...except for relaxed, sooty, absolutely fulfilling living under the hood of the Wundercar. Have been able to mow the entire lawn in one session instead of two. Haven't been able to do that in a while. And have a new power sprayer I'll be trying out towards the weekend. Yeehaw...power tools!
Best indicator: A buddy of mine has been inviting me up to his place (about an hour away) for a couple years now and I've always declined because I couldn't handle the drive up/back. He's having a few over for dinner next month, knows how I've been responding to the meds, and I said yes to his invite. Under the circumstances, that's pretty major stuff for me.
Funny you mention that Pero. Two of my best friends - the only people in the world I'd let say this - actually had the audacity to suggest I might even start having sex again. It's been 6-7 years, I don't care, and it seems like a can of worms I don't want to open up again.
I might try an airline flight first. Only 12 years since I've been able to handle that. (No, no, no...the Mile High Club is not an option).
Libido aside ::rolling eyes at Pero:: haven't posted in a while as I'm now on monthly draws. Next one (+ results) Tues. Meanwhile:
Apparently the combination of new meds and lotsa yardwork the past month is making a diff in my GOOD BMI (read, muscle). My rather large massage therapist (who's trained for probably 30 years) noticed yesterday. I was concerned about lypodystrophy at the outset a few months ago and asked him to let me know about any body changes he noticed.
He's noticed a diff in my arms and chest and he's not one to be patronizing (i.e., "Are the shingles scars permanent?" "Yes, probably" and so on). It seems the muscle is coming back (I've gained 8 lbs. and have man tits again!). I thought I'd noticed, too, but it's good to have another opinion.
His words were to the effect, mygawd, you're becoming become BUTCH! I looked at him quizzically and he said something like, oh, I guess that's too much to hope for. LOLOLOL....
Loc: South-East Europe
Basically Lancer you've said that other man noticed positive change in your BMI and that you are becoming BUTCH? That is some compliment,lol I knew that we could expect many things from you with some time; what else we could expect I wonder
We'll skip "butch" only because it's one of those unachievable goals and not related to the meds.
Monthly draw today. Results from last month's draw weren't as dramatic, plateaued essentially. Still undetectable. CD4 from 97 to 101, % from 4.9% to 4.8%. Of course it's better than where I started and I feel considerably better. Nevertheless, dammit, I was disappointed. Caveat, it's only one draw and I'm only 2½ months into the study.
The study coordinator shared with me they have one guy who after years of this, can't get above 156 on his CD4. More importantly, he feels fine, taking into account he started this in single digits. I started in low double digits. There's a psychological "goal" I've had in mind of eventually seeing numbers in the 200-300 range (10%-20%) and, at the moment, I guess it's to be expected I'm feeling discouraged. Knowing me, however, it'll pass.
On a lighter note, I mentioned during the appt. about my muscle mass and that I was getting my tits back, which, historically, everyone has loved. The study coordinator - love this guy's humor - then added, "And that's what got you here, right?"
Together with the blond hair, it got me a lot of fuckstrouble dates.
I don't want to overdo the "butch" thing, but the massage therapist and I have a good time with it. Today he noticed my deltoid muscles were coming back and that, overall, my physical tension had decreased the past month or so.
Some venting on irony. Usually I find it entertaining, but it's just frustrating in this case.
At three months, the meds are working great. Won't have latest numbers for two more weeks - at the next draw - but they've been improving and, more importantly, I feel pretty good. In the past two months I've been able to knock off most, if not all, the overdue projects on the house and wundercar.
What pisses me off is that business (photography and graphic design/adverts) over the same period has really dropped...just as I finally have the fucking energy to do the stuff! Feels like the Universe is doing a total mind fuck on me.
First draw in a month, actually a double draw (pre- and post-medication). My only bitch is that the first draw wasn't done well...first painful one I've had with these folks - lol...room starts spinning with a draw like that - and it's still hurting. Second draw other arm and, go figure, that's the one that's bruising. Looks like a damned junkie
As for the plateau, guess we're over that and any concerns I had. Results from last month's draw were spectacular. I'm 3½ months into the study: CD4 absolute 185 (from 33) CD4 % 7.4% (from 2.6%)
I've now "graduated" to draws every other month, so nothing until July.
btw, as is typical, this was a fasting draw. No food since midnight, only water. Well, yeah, they got their urine sample. But with all the water I've been pissing all morning as frequently as someone you see in those ads who has prostate problems.
You might appreciate this Pero. My fasting reward between draws was a "breakfast" of a couple Kägi-fret bars.
Loc: South-East Europe
Hey man, wow, congratulations on graduation, lol, and plus those are great numbers! You managed trough many things in short: everything started with shingles and complications, low numbers, low energy, new meds, crazy draws, some worries... but slowly muscles are back, you took out German beauty for dinner with friends, had eaten delicious moussaka there, lol, and now you have terrible good draw results Only sky is limit!
Just in time for my MS 1st anniversary, another draw and the results from a couple months ago. This time around it's a plateau as I'd had previously (not that I'd EVER project, but the last time this happened, it preceded a major jump on the numbers):
Next draw/results early October...so y'all are safe from this thread until then.
Was also told that no matter when I entered the study, as long as they're still taking new guinea pigs, it extends the duration of treatment for the rest of us for another two years minimum. Kinda like a timeline reset. So, as of this moment, instead of having 1½ years minimum left on my timeline, I'm back to two years.
Not significant, but I've dropped some of the initial weight I'd gained...which, imo, I could have stood to lose anyway ;-) Perhaps more clinically significant, the nail fungus that has plagued me the past year has met its match as my immune response has improved. The affected nails are almost back to normal. I guess that means I can finally go back to picking my nose with my index finger.
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