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Autor Tema: Zach's Thread  (Leído 86413 veces)

0 Usuarios y 1 Visitante están viendo este tema.

Desconectado zach

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Re: myelitis anyone
« Respuesta #100 en: Noviembre 05, 2014, 02:51:33 pm »
some good, some not great

abnormal brain mri the other day, lesion is still there, same spot, about the size of a half dollar. contrasting agent showed much better this time and i was able to clearly see what they are looking at. good news, doesn't look like a tumor.

but it's there, left frontal lobe, clear as day.

two more mri's in six months, brain and spinal thoracic. a referral to a stroke specialist, which freaked me out because thats what kills everyone in my family. dr assured me i have not had a stroke, but wants this guy to look at my pictures.

dr described myelitis as an acute monophasic episode. it hit me, it knocked me down, now i seem to be getting up from it. he'll continue to monitor it, but expects continued improvement. he put a two year timetable.

i did pretty lousy on the touch appreciation tests pin pricks and feeling a tuning fork vibration from the knee down, in hospital in march i failed from the groin down. so that is some improvement

got a b12 shot, i really love those, i feel fantastic afterwards. i would do that weekly just for the boost. have been offered tramadol for pain, may take them up on that. got a new med, Baclofen, a type of muscle relaxant.

i've been trying to reduce my pill load, not add three a day.

fully plugged into ADAP, thank you betty and leather for advice a few weeks ago, those notes helped.

think i made real progress getting set up for the clinics internet access, i'm gonna love it if i was successful, find out later tonight when i have time to fiddle

anyway, one more piece of the puzzle

Desconectado tryingtostay

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Re: myelitis anyone
« Respuesta #101 en: Noviembre 05, 2014, 03:03:12 pm »

Desconectado zach

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Re: myelitis anyone
« Respuesta #102 en: Noviembre 05, 2014, 03:06:21 pm »
love, thank you  ;D ;D ;D

Desconectado zach

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Re: myelitis anyone
« Respuesta #103 en: Noviembre 06, 2014, 04:38:20 am »
think i made real progress getting set up for the clinics internet access, i'm gonna love it if i was successful, find out later tonight when i have time to fiddle

anyway, one more piece of the puzzle

hey awesome, it worked! i can now see my records on MyChart. playing with those fancy graphs leather has

been at this for an hour now

reading doctors notes to each other, fascinating and sobering stuff... they were pretty frank about their findings in march... 20 mins later, these notes are gold on a lot of levels, really raises my respect for my medical team.

very glad i got this squared away

Desconectado zach

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Re: myelitis anyone
« Respuesta #104 en: Noviembre 06, 2014, 05:23:14 am »
this much information in my hands can be a mixed blessing, probably best i haven't had access to it while sick

a lot more i need to learn to better understand some of what i'm reading, not sure if it really matters

reading my dr summaries of my visits, i love this guy,

neurologist thought i was well informed and engaged about my condition, that makes me feel good. have to google some of the words he used

lol, there is an iphone app. maybe i should get a phone. nurse is gently pushing it

Desconectado tryingtostay

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Re: myelitis anyone
« Respuesta #105 en: Noviembre 06, 2014, 09:33:07 am »
Sounds like something similar to 'My Chart'

Desconectado zach

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Re: myelitis anyone
« Respuesta #106 en: Noviembre 06, 2014, 09:34:47 am »



hey awesome, it worked! i can now see my records on MyChart.
Sounds like something similar to 'My Chart'

yes yeeess! any experience with the iphone or android apps?
« última modificación: Noviembre 06, 2014, 09:37:12 am por zach »

Desconectado Buckmark

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Re: myelitis anyone
« Respuesta #107 en: Noviembre 06, 2014, 09:35:54 am »
Zach,

I'm glad your visit to the clinic went pretty well, and your tests show good improvement, and that your doctor expects you to continue to do so.  Hopefully the referral to a stroke specialist stems from an "abundance of caution". 

Yes, online access to all your medical records / notes / tests is a double-edge sword.  It is nice to have access whenever you want.  But if you read something that you don't understand, or seems disturbing or serious, it can lead to a fair bit of anxiety before you can get in touch with your doc or nurse to get your questions answered.  One of the most convenient features of online access to my health records is to view my upcoming appointments (when you have as many as I do, it's hard to remember).  And all the clinics / providers are all developing mobile apps, too (MD Anderson has one that I use).

I had a brain MRI 2 weeks ago.  Laying there in the MRI machine feels like an "other wordly" experience to me -- all that noise, and the vibrations / shaking.  I'm fine in the machine, but once I'm done, it takes a couple of minutes for me to adjust to the "real world" again.

Cheers,

Henry
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Desconectado tryingtostay

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Re: myelitis anyone
« Respuesta #108 en: Noviembre 06, 2014, 09:54:22 am »
well that shows my ability to pay attention, dayum :(  whoops, sorry man.


Desconectado Miss Philicia

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Re: myelitis anyone
« Respuesta #109 en: Noviembre 06, 2014, 10:08:34 am »
Unless smartphone apps can sync for use with a desktop I find them useless, not to mention not all doctors are good at updating their information or even if electronic in their office allowing patient access, etc. I think it's a bit early at this point to try and do much on the patient end, certainly with HIV if you have a lot of "extra" specialists.

The best I've fond that I can do is use Evernote which syncs across all platforms and use it for my medical notes. My contacts and calendar all sync so keeping my appointments organized has never been a problem, and I'm very fastidious with this issue. If you have an iPhone but do not use a Mac for a desktop you need to sort out sync issues using google/contacts/calendar which, while not as elegant in looks or process, does the job effectively.

Of course with iOS8 there is the new HealthKits which will allow developers to make health specific integrated apps but it's very early on that front with Apple and I doubt there are many apps yet that interface with anything on the doctor's side. PennMed uses MyChart but I don't find it very useful.
"I’ve slept with enough men to know that I’m not gay"

Desconectado mitch777

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Re: myelitis anyone
« Respuesta #110 en: Noviembre 06, 2014, 10:46:33 am »
Hey Zack,

I read your update as being pretty positive. It sounds like you have made headway with your legs and more improvement seems likely. Relieved to hear that the lesion isn't a tumor. I see you walking longer trails soon!

Hugs,
m.
33 years hiv+ with a curtsy.

Desconectado zach

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Re: myelitis anyone
« Respuesta #111 en: Noviembre 09, 2014, 03:33:04 pm »
for the geeks that are into this type of reading

summary of my mri results

MRI BRAIN W WO CONTRAST

MRI OF THE BRAIN WITHOUT AND WITH IV CONTRAST

INDICATION: HIV-related myleopathy with new lesion to brain, follow up from April,Immunocompromised

TECHNIQUE: Examination performed on a 1.5-Tesla system. Pre-contrast sagittal and axial T1-w, and axial FLAIR, GRE, and diffusion-w sequences of the brain with ADC maps. Post-contrast axial T2-w and T1-w, and sagittal volumetric T1-w images of the brain
with coronal reformations. MultiHance.

COMPARISON: March 30, 2014

FINDINGS: There is a very subtle area of increased T2 hyperintensity along the cortical margin in the same area identified previously on the mesial inferior aspect of the left frontal lobe. Less prominent than prior. There is no mass or mass-effect, or
abnormal extra-axial fluid collection. Diffusion imaging shows no hyperacute, acute, or early subacute infarction. The ventricles are normal in size, shape and position. There are normal signal voids in the larger intracranial vessels. The paranasal
sinuses and mastoid air cells are clear. The marrow signal pattern is within normal limits.

When contrast is given There is again the distinct enhancement in this mesial inferior frontal lobe area which considering differences in technique is probably unchanged and still measures approximately 1 cm anterior-posterior by transverse a 1 cm. Is no
associated mass effect.

Impression
IMPRESSION:
Left frontal lobe lesion in its mesial inferior extent identified March 30, 2014. It perhaps is decreased somewhat in the T2 hyperintensity is relatively unchanged in its overall contrast enhancement. Interval stability suggests indolent nonaggressive
process. The fact that there is probably less T2 change suggest there some evolution to this lesion making it less likely to be cortical telangiectasia as we had no prior other imaging on this patient. Unless otherwise clinically indicated follow-up in
3 to 6 months is recommended.

Desconectado zach

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Re: myelitis anyone
« Respuesta #112 en: Noviembre 10, 2014, 07:56:29 am »
new med in hand, knocking back first dose

baclofen, a muscle relaxant 10mg 3x daily... gaba b antagonist, different from benzos

 :P le bon temps rouler

Desconectado zach

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Re: myelitis anyone
« Respuesta #113 en: Noviembre 10, 2014, 03:35:00 pm »
no way in hell i can take this three times a day and function, just slept five hours... feel great though


Desconectado Miss Philicia

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Re: myelitis anyone
« Respuesta #114 en: Noviembre 11, 2014, 08:22:02 am »
I haven't taken baclofen but I have taken other muscle relaxants. Is it really knocking you out or something? They either didn't bother me much or my body adjusted quickly after a few days. About a year ago I had to take them for at least a month or more when my spine muscles got out of whack after my last foot surgery.
"I’ve slept with enough men to know that I’m not gay"

Desconectado zach

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Re: myelitis anyone
« Respuesta #115 en: Noviembre 11, 2014, 09:00:35 am »
trip report after two doses

i'll take a third dose daytime dose this morning, if it knocks me out again i'll only be taking this at night

i have considerable recreational experience with various muscle relaxers. this stuff isn't actually that strong. but i wouldn't be driving or using a saw.

i may well adjust as i build tolerance

first dose. sedative effect seemed to come on in about an hour, not really a high so to speak but a few minutes of vertigo and disorientation before i nodded off, lasted 4-5 hrs, shot of espresso to shake it off when i woke.

second dose, vertigo was not as bad, but i also laid down for bed. slept well. no real hangover type feeling.

therapeutically, it is working. i feel somewhat rubbery. the spasticity in my abdominal and thigh muscles is softened.

i did 20 lunge steps this morning without busting my ass. tried to jog, not so much.

dog was disturbed, she's not used to me moving quickly.

if i can get back my old morning work out, i write that down as fully recovered physically. then i focus on gaining back lost weight and muscle tone

that's the goal, i'm getting close

Desconectado zach

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Re: myelitis anyone
« Respuesta #116 en: Noviembre 15, 2014, 01:16:04 pm »
so this just happened, i did
20 push ups
20 sit ups
5 pull ups
5 mins of clumsy mountain climbers
10 curls per arm 20lb

if i can get my bike back from son, think i could ride a few miles

i've day hiked two mountains. and my goal, in early spring, a week solo long backpacking a little over 60 miles, the georgia loop trail
 

Desconectado BT65

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Re: myelitis anyone
« Respuesta #117 en: Noviembre 15, 2014, 05:08:17 pm »
That's impressive. I couldn't even do that on a good day.  A 60mile hike? Wow!
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Desconectado mitch777

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Re: myelitis anyone
« Respuesta #118 en: Noviembre 15, 2014, 05:13:02 pm »
I couldn't do any part of your list. Very impressive indeed!
33 years hiv+ with a curtsy.

Desconectado zach

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Re: zachs treatment thread
« Respuesta #119 en: Noviembre 25, 2014, 05:44:52 pm »
Need some edumacated help here. Nothing alarming, just curiosity. So my PA and I are pushing for a med change to Stribild soon, and now that I have access to MyChart, I'm looking at my genotype resistance profile. Looks great.

Specifically, can anyone translate the portion I've highlighted in red?


HIV GENOTYPING       see note
--------------TESTS-------------RESULTS--------UNITS--REF. RANGE---
HIV-1 GENOTYPING REPORT
HIV-1 DRUG RESISTANCE MUTATION ANALYSIS

Nucleoside Reverse Transcriptase Inhibitors
EPIVIR (lamivudine, 3TC) No Evidence of Resistance
EMTRIVA (emtricitabine, FTC) No Evidence of Resistance
RETROVIR (zidovudine, AZT) No Evidence of Resistance
VIDEX (didanosine, ddI) No Evidence of Resistance
ZERIT (stavudine, d4T) No Evidence of Resistance
ZIAGEN (abacavir, ABC) No Evidence of Resistance
VIREAD (tenofovir, TDF) No Evidence of Resistance

Non-Nucleoside Reverse Transcriptase Inhibitors
RESCRIPTOR (delavirdine, DLV) No Evidence of Resistance
SUSTIVA (efavirenz, EFV) No Evidence of Resistance
VIRAMUNE (nevirapine, NVP) No Evidence of Resistance
INTELENCE (etravirine, ETR) No Evidence of Resistance

Protease Inhibitors
AGENERASE
(amprenavir, APV) No Evidence of Resistance
LEXIVA (fosamprenavir, FOS) No Evidence of Resistance
CRIXIVAN (indinavir, IDV) No Evidence of Resistance
FORTOVASE (saquinavir, SQV) No Evidence of Resistance
KALETRA (lopinavir+ritonavir, LPV) No Evidence of Resistance
VIRACEPT (nelfinavir, NFV) No Evidence of Resistance
REYATAZ (atazanavir, ATV) No Evidence of Resistance
APTIVUS (tipranavir, TPV) No Evidence of Resistance
PREZISTA (darunavir, DRV) No Evidence of Resistance

* At least one mutation shown has not been fully validated.
** At least one mutation shown has not been clinically
verified. *** For at least one mutation, both notes above apply.

DRUG RESISTANCE MUTATIONS DETECTED:
Reverse Transcriptase Gene:
Protease Gene: L10I, L10V

NOVEL MUTATIONS DETECTED:
Reverse Transcriptase Gene: V35M, T39A, T39S, E122K, I135T,
I142V, Q207D, R211K, L214F, V245M, D250E, S251Q, P272A,
R277K,
V292I, I329L, Q334E
Protease Gene: V3I, I13V, G16E, S37D, R41K, D60E, L63H, L63K,
L63N, L63P, L63Q, L63T, E65D, I72T, V77I


HIV Subtype: B

These results were obtained from the use of Celera Diagnostics
ViroSeq v2.8 assay. This test has been approved by the FDA for
IVD use.

Desconectado zach

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Re: myelitis anyone
« Respuesta #120 en: Noviembre 30, 2014, 03:12:13 am »
i'm pretty freaked out right now.

i need to write this down just to clear my head, i think i'm coherent, i seem to writing ok...

i probably made a mistake stopping baclofen for a few days. then made that mistake worse. i took 2 baclofen and 2 gabapentin together. nside the as needed dosage of both. i've still never taken as much in a day as prescribed. i'm supposed to take them together, but i've only done it once before, this disn't happen last time.

it can't have lasted more than a couple hours.

the most intense, vivid dream i've ever experienced. it was little like tripping. it was just disorienting. i was suddenly aware, and didn't know how i'd got where i was. a couple people i knew were there. a young black guy told me they'd come by and picked me up.

sit here and think about it, more details fill in.

none of it was real, can't have been. feel very confused. i was just trying to get the twitching to stop, and my muscles to release. i can still feel the impulses crawling around my body.

i'm very tired, and going back to sleep now. glad dog was here when i came to, some little kid in the dream told me a yellow dog ran away.

feel myself slipping away again right now. i just snapped up, i've been staring at the screen for about ten minutes. mind just drifted

thigh, armpit, left eye all twitching badly now. leg is a steady jerk. neck popped and i took a sudden inhale, started coughing

i've never had a "bad" trip... this was close, so real it was overwhelming. almost fel tlike mescaline
« última modificación: Noviembre 30, 2014, 03:15:34 am por zach »

Desconectado zach

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Re: myelitis anyone
« Respuesta #121 en: Noviembre 30, 2014, 07:05:32 am »
i woke up feeling great, clear headed and physically relaxed and moving well.

i'm supposed to take three of each of those per day, as needed.

i need the medical benefit, but i don't need that trip. it didn't last long, may have only been a strong reaction because i stopped taking it, then went back on.

i know better than that.

i've sent a message to my nurse, to relay to my ID and neurologist. i'm going to cut back to one of each at night, try not to freak out from any more visions. it's a holiday weekend, i don't expect a response they've got rolling next week. i'll be ok. will look for alternatives.

psychedelic warrior, i broke down the doors of perception years ago. hell, the wall came. i've always been pretty comfortable walking that side.

that was like ergot or peyote. total dissociative vision trip. been thinking about the things i saw last night. those kinds of trips used to mean something to me. the two girls i knew in the trip, haven't seen them in twenty years. sisters to the addict i've loved all my life (see my last post) i think i just worked out a lot of subconscious stuff i've been keeping a lid on.

i can hear them clear as day in my head. a certain kind of southern accent, i've always loved the way that family's deep drawl. 

enough is enough
« última modificación: Noviembre 30, 2014, 07:15:27 am por zach »

Desconectado zach

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Re: AUNT KIM myelitis anyone
« Respuesta #122 en: Noviembre 30, 2014, 08:30:31 am »
aunt kim  :-\ :-\ :-\  :-X not sure about this at all, but here i am, exposed. i do write, some of it is here

this is my thread, i treat it that way, i own it, everything i've said here... good or bad... no red ink editing please

this is where i vent, steam that has to be released so i didn't blow. couple times i blew anyway. when i went back to florida, that was a mistake. when i od'd and landed in treatment lockup, that was a mistake.

edited... came back to add.. both long stays in grady, even when i was pissed at dad for telling everyone. i know he needed a shoulder too.. still pissed the way he acted. not that i've been better.

end of edit

most of of things i've said here i wish i hadn't shared. in hindsight, i regret it, but i needed it at the time i did it. i do it mostly to be able to go back and read myself... just to see where i've been, most of the time it's helped keep me grounded

sometimes, i think i've helped some people. sometimes, i'm a wounded animal backed into a corner.

a few of the people in here, i really wouldn't have made it without. they know who they are, they will see you if you post.

to the rabble... just letting yall know, i've let a family member in... i know yall will be nice. it's no secret i've got a short fuse, i'll go explosive if you're not nice to her. if i bite you, i''m sorry

i love all of you, i wouldn't keep dragging my sorry back if i didn't. 
« última modificación: Noviembre 30, 2014, 08:32:33 am por zach »

Desconectado zach

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Re: myelitis anyone
« Respuesta #123 en: Diciembre 01, 2014, 10:12:23 am »
this is mostly just musing thoughts to myself.

i will admit, i find it hard not to demonize gilead. ungrateful poster child i know, their meds have now saved my life twice. it started possibly because of the biblical roots of the name, that rubs me wrong. is there no healing balm in the town of gilead? it was a cure all... and that story just sounds like snake oil to me. blessed by the man or not. when it comes down to it, i'm going to do more than trust in big J to heal me through the power of prayer and faith. (which is the message of that story) maybe it's resentment at being tied to a med, but i don't think so, i've been fine on my current meds.

i realize it was only the sustiva portion of atripla that i can't tolerate. i am now on a truvada based regimen. so i still haven't gotten away from the manufacturer. i also don't completely subscribe to the one pill fixed is the be all end goal. i take four, they agree with me. it works, and that works for me.

we do what has to be done.

i worry that many newly dx'd pozzies simply don't know there are options. at first, looking at the poster on the wall of all the meds used to treat hiv, i felt like i must be on the latest and greatest, and that has to be the best. it took me most of the first year to (more) fully educate myself. and then some additional time to assert myself. i have no problem speaking truth to power, but i'm no doctor and always hesitate to stand against expert advice.

now, if it comes up, i simply tell my team i refuse to take sustiva. end of story. if asked, i'm honest about why.

in another thread a poster asked about pill fatigue, for a single pill. on many levels i can't relate to that at all. for most of this year i took two dozen pills a day. four arv's, and a variety of meds to fight the OI's i was racked with. that to me was fatigue. but i did it, and i stood up when the time came to say i was stopping some of them.

now, if i took all i am prescribed, i'm still at around a dozen. some of them are as needed. some of them i've told my doc i'm making them as needed. the four arv's, 5 pills, they are written in stone.

i am in talks to transition to stibild, and am eager. scared? not a bit. i'll address whatever side effects may (or not) come up, but without experiencing it, how would i know? i've been told (but not cleared yet) that i can safely drop isentress from my combo. that would cut me back to three pills a days. i'd be fine with that too.

anyway, this is what i wrote in the atripla thread, didn't think all if this belonged there.

Desconectado Jeff G

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Re: myelitis anyone
« Respuesta #124 en: Diciembre 01, 2014, 10:34:38 am »
You raise some good points Zach . I never miss an opportunity to talk to my doctors and tell them all about this forum and the discussions we have had about Atripla. I am told that Atripla is no longer the first line treatment at my clinic and that is mostly because the patients spoke up in enough numbers as well as more data coming in from research so I do think talking about that drug to our doctors does have a benefit .

 
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Desconectado zach

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sore throat, chest pains, dry cough... DMN FK SHT
« Respuesta #125 en: Diciembre 01, 2014, 02:19:00 pm »
i gotta work on being less long winded, more brevity and succinctness, i type quick so it's easy to vomit it all out on the screen

so here goes, follow along if you want

8/5 CD4=119
9/26 cd4=113 taken off mepron at my request
11/18 VL  UD (yay!) VL consistently suppressed since 6/6 labs... flu shot
cd4 not posted online yet... seems long enough, but due to holiday i'll be patient. only concerned because of last minor blip... eager to NOT see a trend

my father has so far not gotten his flu shot, and he's been sick for a week... in dramatic fashion i might add, what a horrid patient to be around... he's infamous for his sick act... i'm better behaved at deaths edge in a ward

script refill in the next couple of days, i'm going to put the order in person, calling in so many rx numbers is frustrating as hell... the order was up, so i'll be issued new numbers this go around... my refills are 30 day, but the script lasts for 6 months before i need to get new numbers

now my chest is feeling like this, no congestion, but the sore throat went down into my right lung (the one that is ate the fuck up) within a day

wondering if while i'm there i should ask for more mepron... i hate that shit, i know the ones of you that have had to take it hate it too. i'll drink it if i must. or say nothing and treat with otc meds

any thoughts on this?

Desconectado zach

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Re: myelitis anyone
« Respuesta #126 en: Diciembre 02, 2014, 06:55:24 am »
           9/26           11/18
VL       UD              UD
CD4#  113                121   
CD4% 13%            13%

% has remained at 13% for the past 3 labs
# blipped down to 113, then back up... 121 is the highest i've seen all year

back on track, slow movement upward

sick as hell right now, it hit hard late last night. had really bad shakes and vomited a few times at about 3am, temperature is 101.6° right now. i shouldn't have gone out standing in the cold, irresponsible of me. trip to the clinic to refill meds sometime this week when i can arrange a ride. i'll send an email to my nurse informing her.

Desconectado Miss Philicia

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Re: myelitis anyone
« Respuesta #127 en: Diciembre 02, 2014, 07:23:26 am »
Seeing as how you went off any prophylactic (mepron) earlier than recommended, and you just experienced whatever it was you experienced last night, do you not think it prudent considering your cd4 count to go into the doctor? Your temperature is high. Did the fever only begin yesterday?

I think if it was me I would go to my clinic as a walk-in appointment, and I'd do it early as in when they open the doors because that's often when it's easy for them to fit someone in if an appointment is late.
"I’ve slept with enough men to know that I’m not gay"

Desconectado zach

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Re: myelitis anyone
« Respuesta #128 en: Diciembre 02, 2014, 07:36:13 am »
yes, back on mepron. i restarted last night, stomach felt like that is what triggered the vomiting, or the oranges i ate, or maybe the alka seltzer cold and flu i took. mepron is a lot like torture msp. maybe it all just mixed into a witches brew.

i do think it prudent to go in. earliest i would be able to get to the clinic is thursday morning, awaiting a response from my nurse, she's quick about emails. i have to go in to pick up meds anyway. asked her if i should wear mask, gloves, and go in the side door.

fever began last night, yesterday i was normal throughout the day, but did have a sore throat.

just took it again, it is 100.1° , so it may be breaking.
right now,

Desconectado zach

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Re: myelitis anyone
« Respuesta #129 en: Diciembre 02, 2014, 09:18:00 am »
email directly from doctor

fever instructions... manage at home unless i show further symptoms, monitor fever, advise if 103 or above.

tylenol, fluids, rest, warm bathes, wet rag on head..

2/1 med change to stibild!!!! he wants me already positioned to transfer to the new stribild when they start to supply it

he was adamant about going back on mepron. "we gave it chance, it didn't work out, take your meds, suck it up buttercup"

sending son into clinic to pick up meds, y'all were talking about side eye, i just got it. they are educated, but still a little sketchy... i guess i'm one thing, but a pharmacy full of aidsy tripped him out for a second... he came around

Desconectado zach

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Re: zachs treatment thread
« Respuesta #130 en: Enero 27, 2015, 06:37:52 pm »
Stribild in hand! Waiting until Sunday for first dose, that'll give me a one week surplus going into the new med.

145lb, gained 15lb back since April, 15lb more and I'll be happy.

BP of an athlete again.

Chest cat scan scheduled in Feb, if that's clear, no more prophylaxis... he wants that out of caution so I went along.

Overall, power day, needed it.

Desconectado guitargal

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Re: myelitis anyone
« Respuesta #131 en: Enero 31, 2015, 03:41:45 am »
wow read some of your story here and way to go!
so many tough roads we go down and then a bright plateau..

yes your info helps people..

inspired me to get off my ass and try to get better…
now i need to get some stretching and exercise in..daily..even if it is a little at a time..
thanks for your onsite and sharing.
What a long strange trip it's been

Desconectado zach

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Re: myelitis anyone
« Respuesta #132 en: Febrero 01, 2015, 07:13:41 pm »
wow read some of your story here and way to go!
so many tough roads we go down and then a bright plateau..

yes your info helps people..

inspired me to get off my ass and try to get better…
now i need to get some stretching and exercise in..daily..even if it is a little at a time..
thanks for your onsite and sharing.

It does not matter how slowly you go as long as you do not stop. - Confucius

Desconectado zach

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Re: myelitis anyone
« Respuesta #133 en: Febrero 01, 2015, 07:14:41 pm »
first dose... GO!!

Desconectado zach

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Re: zachs treatment thread
« Respuesta #134 en: Febrero 16, 2015, 11:42:18 am »
http://adaywithhiv.com/

they picked me! 5pm

Desconectado Jeff G

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Re: myelitis anyone
« Respuesta #135 en: Febrero 16, 2015, 11:46:17 am »
http://adaywithhiv.com/

they picked me! 5pm

And your little dog too ! . Great pic and great project .
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Desconectado areobe

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Re: myelitis anyone
« Respuesta #136 en: Febrero 16, 2015, 12:28:55 pm »
Agreed - Great pic and project.  Congrats!!  :D
03-Dec-2014 Dx'ed HIV+
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09-Jan-2015 CD4 189
08-Apr-2015 CD4 182 VL UD

Desconectado zach

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Re: myelitis anyone
« Respuesta #137 en: Febrero 18, 2015, 03:55:27 pm »
ct chest today, with contrasting agent

lab work 2/24

Desconectado zach

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Re: myelitis anyone
« Respuesta #138 en: Febrero 24, 2015, 08:07:45 pm »
ct chest scan looked great, happy about that

been on stribild for a month now, transition was seamless with no side effects at all to speak of... assuming my viral load remains suppressed i'm thrilled to be back on a single fixed dose

fielded a lot of questions from doctor about transverse myelitis, i think mostly for him to know how i've adapted... taking bethanechol as needed for a few days at a time every couple weeks relaxes my bladder... senecot usually once a week... baclofen occasionally for general spasticity. between those three i can keep all the lower muscles relaxed enough

mobility is great, physical therapist was impressed. gait is improved, i'm still midfoot striking if i don't really think about heel/ball/toe. but when i focus on it, i walk normally now, just slower. touch response greatly improved, i pass all the pin prick tests now. still don't feel the tuning fork anywhere below my knees. sensory reflex reactions below the knee are still abnormally high. neuropathic pain is manageable, just become something i live with now. every once in a while a bad jolt will hit, but nothing like what it had been.

he recommended viagra, but isn't sure i'll actually achieve orgasm, nerve fibers may just be fried out... fml... some sort of karmic poetic justice, sex addiction got me here now i'm a damn monk... maybe it's for the best, dunno. fucks with my head more than a little though

it may be that i've reached the limit of what i'll recover

mri brain in the next couple of weeks to track that lesion, no treatment expected unless it has grown malignant in some way

fuck it, drive on

Desconectado zach

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Re: myelitis anyone
« Respuesta #139 en: Febrero 26, 2015, 01:01:07 pm »
rash on inner legs this morning, took a couple benadryl and applied hydrocotisone cream, email to the nurse... see how things go from here

probably a reaction to detergents, my skin has become very sensitive the past year... i changed all the soaps i use but not clothes detergent, think thats probably called for now

Desconectado Theyer

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Re: myelitis anyone
« Respuesta #140 en: Febrero 27, 2015, 05:49:57 am »
Dear Zach
Washing detergents especially Bio ones can be very harsh on any bodies skin .
Re the Monk thing same boat have been for a long time
I have been able to find shall we say an accommodation with the situation , fortunately there is still touch. Does uncle Confucius have anything to say on the subject I don,t know something like He that has sown much seed may rest----- it needs work.

What does cheer though is to read the first post off this thread and then fast forward to the last ones.

All the best
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Desconectado zach

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Re: myelitis anyone
« Respuesta #141 en: Marzo 04, 2015, 01:05:46 pm »
just venting here.. nothing to see

a friend passed away this morning after a long battle with cancer. i was planning on stopping in to see him next month, now i'll be paying respects

one more reminder that although i have a virus/disease, it is manageable. my father has fought pancreatic cancer, very painful thing to live with. makes me worry for him.

death is the only promise we all keep
« última modificación: Marzo 04, 2015, 01:11:10 pm por zach »

Desconectado Jeff G

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Re: myelitis anyone
« Respuesta #142 en: Marzo 04, 2015, 01:24:13 pm »
My condolences on the loss of your friend Zach . 
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Desconectado wolfter

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Re: myelitis anyone
« Respuesta #143 en: Marzo 04, 2015, 01:29:36 pm »
Sorry for your loss Zach.
Being honest is not wronging others, continuing the dishonesty is.

Desconectado Wade

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Re: myelitis anyone
« Respuesta #144 en: Marzo 04, 2015, 01:58:58 pm »
Zach,
Sorry about the news of your friend,
and wish your Dad well.
Take Care of Yourself , Wade
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Desconectado zach

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Re: myelitis anyone
« Respuesta #145 en: Abril 14, 2015, 11:03:34 pm »
just crying into void here.

transverse myelitis... i'm fucking tired of it.

i tried not to whine too much about just how much it's hurt, or how difficult the past year has been.

when i started to improve, i was thrilled, and tried to throw myself back into life. past few months have been great, and i got overconfident.

son was right. he's a smart kid. i went too hard too fast.

legs are going wonky again, and a lot of the numbness is coming back. spasticity has been coming back with a vengeance. back on a cane, and tonight, one cane isn't enough. other things i won't go into here.

i'm just pissed off and discouraged. anyway, thats the vent. good thing no alcohol in the house, i feel like getting blistered. i hate sitting in a god damned chair.

Desconectado Jeff G

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Re: myelitis anyone
« Respuesta #146 en: Abril 15, 2015, 09:28:22 am »
Im sorry you are feeling this way Zach . When I moved back to Alabama with single digit cd4 counts and cancer I thought I was never going to recover some of my mobility but I did, it was painful and slow but I did improve and I just bet this will be the case for you .

I know nothing I say can make your pain go away but I just wanted you to know I am thinking of you and still impressed at far you have come .
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Desconectado DANIELtakashi

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Re: myelitis anyone
« Respuesta #147 en: Abril 15, 2015, 09:35:20 am »
Zach,
Please take good care.
I like you a lot and hope you will make it to SHIKOKU someday.

Jeff,
Allow me to greet you here.
Take care.
Japanese National.
Language:  Japanese and English

Desconectado wolfter

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Re: myelitis anyone
« Respuesta #148 en: Abril 15, 2015, 01:46:09 pm »
Hopefully just a temporary setback.  Pushing ourselves is what makes us survivors.  I'd never recommend alcohol to overcome setbacks.  Almost spit my wine out  typing that..   :)

Take care buddy
Being honest is not wronging others, continuing the dishonesty is.

Desconectado Wade

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Re: myelitis anyone
« Respuesta #149 en: Abril 15, 2015, 07:12:29 pm »
Zach,
Don't fucking go there !
You are an inspiration , even to to those who have lived though the worst.
Your posts always pick me up ,and most importantly make me laugh...
Thank You !
PM me if you want to talk ! Your one of the good ones...Wade
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