- don't understand
- Posted by linea
I have for three years had an cd4-count below 200. I don't use medication
and have no symptoms. I feel there is a sort of war going on inside my
head - it is a matter of faith; should I belive in the voodo from the
doctors or in what i in fact feel - that I am healthy. If I choose the
doctors, I am sure I get sick very soon. One more thing; where is this
infection? All the tests that show my immunsystem are normal. Even CRP was
below 7 when I had my "primaer HIV-infection" four years ago - and since
then it has been normal.
We should look for facts. Who else get their cd4-count messaged? Noone.
- Posted by Brian Mailman
linea wrote:
Whether or not you choose to use anti-retroviral medication is a choice
between you and your health provider.
But hopefully, with a t-cell count that low you are taking preventives
for some of the OIs, pneumocystis pneumonia (PCP) in particular, and if
lower than 150, then something against a form of meningitis and possibly
something against a blood disease called "MAI/MAC."
B/
- Posted by linea
But - every person has his/hers immunesystem, and this 200 is statistics.
Maybe my cd4-count is OK. You have to look at the whole person? Maybe it
would be wrong to push my cd4-count with meds? Of course I think of what may
happen - if I get miningits, PCP and whatever, but I am also afraid of the
meds. My view are that you don't take meds if you aren't ill.Did anyone
think about what happened to herpes 2 - about twenty years ago. There was a
hysteria in the media about all the things that could happen if you had
herpes 2. This virus is known from the roman time and is first mentioned in
medical literature in 1700 a.C. The hysteria came just before the medicin
Zovirax was launched. It doesn't cure herpes, but make it more easy to
handle. Herpes 2 is very common, we know today. And it is not dangerous.
So - what about HIV? Is it an old virus - and is it dangerous? Is it the
virus that is dangerous or the diagnosis? I am not a dissident, but I am
thinking and I want to ask questions..
..I have never heard about this blood disease, what is it? My health provider
has since three years called me a ticking bomb, that now the way is going in
one direction, that I can get this and that. Have you heard about the
Nocebo-effect? The placebo's evil twin?
"Brian Mailman" <bmailman@sfo.invalid> skrev i melding
news:3F466F05.FFEFE294@sfo.com...
- Posted by Brian Mailman
linea wrote:
No, these meds are to prevent you becoming ill. I'm not talking about
the HIV meds, but the ones that exist to KEEP you from getting ill/
Look. This isn't a cold or the 'flu (influenza) we're talking about.
These things can kill you. They killed hundreds, maybe thousands before
they found cures.
Imagine that you have 20-pound weights on your ankles, knees, wrists,
and elbows. tie 60 pounds around your waist. Now try to run, but the
only air you can get is through a drinking straw. That's only the
BEGINNING of what the pneumonia feels like.
The meningitis? Wow. Imagine the worst hangover from drinking you ever
had. Now multiply that times 10. Multiply THAT times 10. Now imagine
that it hurts so much to move you can't, and you can't anyway because
your neck is now solid with your body. Imagine that light is solid and
it HITS you. Same with sound, someone walking across the room feels
like they're beating you up. Imagine permanent brain damage before the
medication they give you for it once you've got it starts to work.
Imagine the medication they give you to cure it is so horrible with the
side effects you really do wish you could die. All that CAN be
prevented.
Did anyone
Do a web search for Mycobacterium Avians Complex.
Oh. I forgot. The medication that prevents the pneumonia also prevents
another brain disease called Toxoplamosis. It turns your brain into a
spider web. LIterally. Nothing left inside your skull. And the
medication that cures that? It's so poisonous they give you the
antidote to take 2 hours after you take the medication!! And the
medication lasts a full month, and it's not a very happy month. I
know. I called it The Month of Vomiting because even when I wasn't
eating anything I had intense nausea and dizziness and dry heaves.
Much better to prevent it than cure it.
He might just be right. OK, if he's wrong, you might feel some side
effects from the PREVENTIVE medications (not talking about the HIV
meds). Nothing like the cure.
And if he's right? What happens then? You REALLY want to take the
chance? I can't understand why anyone would choose that.
Maybe it's something you have to go through before you understand. And
I'm a stranger, you don't know me. But. Please. Believe me. It's no
fun, no fun at all.
B/
- Posted by GMCarter
On Fri, 22 Aug 2003 18:57:17 -0700, Brian Mailman
<bmailman@sfo.invalid> wrote:
I think you are referring to the Opportunistic Infections that are
more likely to occur when the T cell count drops below 200. And the
medications you can take, like TMP/SMX (Bactrim, Septra) to prevent
the development of PCP. In THAT context, thousands used to die in the
west.
Of course, I know you know this Brian, but just to clarify, today AIDS
is killing some 8,000 men, women and children each and every day.
Except the pharmaceutical companies pay the western politician to push
the World Trade Organization and small countries toward protecting
their so-called property so hard to assure they make ALL profits and
they don't give a flying fuck in hell that all these people are dying.
Millions WANT to take these meds. Or at least have the choice to say
no!
But the genocide goes on.
George M. Carter
- Posted by Hayek
GMCarter wrote:
Bullshit.
45 new cases in the Netherlands in 2001
(pop 16 000 000 )
120 new cases in Belgium in 2001
(pop 10 000 000 )
These enormous mortalities are estimates, mainly
coming from countries where no decent statistics
are held.
Dying from aids or dying from starvation is often
mixed up in these countries, because aids deaths
lead to more funding.
Hayek.
- Posted by Brian Mailman
GMCarter wrote:
Yup, and that "200" is an arbitrary number--some, like our OP here can
remain healthy with counts below 200 while others develop symptoms of
various sorts at 400. <cue "repertoire" explanation>
See Mr. a (may I call you 'line"?), think of t-cells like letters of the
alphabet. Each one has a common 'sense' (or thing that it fights). For
example, you can take out the letter 'a' nd still be ble to red the
sentence. You cn even tke out the letter 'e' nd still b abl to mk sns
out of th sntnc. Mostly.
But there comes a time when so many letters have been removed, you can't
read the sentence any more. Same thing here. What's happening is that
even while your t-cell count is low, you still have enough t-cells with
the letter 'p' to fight off the pneumonia, and still have 'm' to fight
off the meningitis.
It will get worse. You will probably lose about 75 t-cells a year.
Eventually, without the HIV meds, you will lose so many of one kind
you'll get ill.
Now, I'm not going to argue you into taking the HIV meds. That's a big
decision, and one between you and your doctors. But. What really is
clear you need to take the preventives or given enough time, you WILL
get sick.
Very sick.
Do a google searchon "Pasquarelli" and see what happens to someone who
will/would not take the HIV meds AND wouldn't take the preventives.
He's lucky he's alive.
There's a book called "Innumeracy" about comprending these kinds of
numbers. (word is based on inliteracy, the abilty to read but not
comprehend). Small town in CA south of here I was raised in part-time,
Steinbeck Country, was 22,000 people at the time.
8,000 a day. Means 2-3/4 days and the place would be EMPTY.
see, line? You hear about the 'orthodox' pushing the meds, but we
don't. We recognize their are side effects, we recognize there are
costs, we don't like the way it's all organized but we do agree the meds
are better than the alternative.
Except of course the toxo med and the one for meningitis. Those are
truly horrible to take.
B/
- Posted by GMCarter
On Sat, 23 Aug 2003 12:24:31 +0200, "linea" <traviata@hotmail.com>
wrote:
Good question. Because I personally know people there that want them.
One is dead. Because the media have covered it. Reports from activists
there, many with HIV. Reports from my friends here. I haven't been to
Africa yet, but I certainly have sat with people in India, Thailand
and Nepal and know their situation. They definitely want access to
ARV and they should have.
No way 4-5%. This is nonsense. The only drug that has an immediate
onset drug reaction that could be fatal is abacavir if you have a
sensitivity to it. It is RARELY ever fatal but you have to stop the
drug at once.
That is a choice you are ABLE to make is all I'm saying! Now, that
having been said, it is a perfectly reasonable choice for MANY people
with HIV. If your T cell count has been pretty stable around 300,
you're probably OK to wait for a while as far as starting the drugs.
Because they DO cause many side effects. Not in everyone. You have to
be ready in your own mind to deal with them if they come up. Probably
the most common ones are diarrhea, nausea, vomiting--but there are a
lot and there's no question that is a big challenge. At the same time,
the OIs, as Brian has tried to convey, aren't exactly a picnic either.
Now, there ARE other interventions you can try and SHOULD be working
on in some cases to try to delay progression further.
1) Exercise. Start a program. It doesn't have to be extensive but
create a weekly habit out of it.
2) Diet. Eat well!! Lots of little meals-but good quality food, if you
possibly can. Avoid processed foods, alcohol, caffeine, and that lot.
3) Take a potent multivitamin every day. And a B complex. Get one
without iron if you can.
4) Stress reduction. There are lots of techniques, including breathing
exercises and walking, meditation, massage, support groups, and so
forth that can help you to confront the anxiety and fear you have
about HIV, mortality, ARV side effects, and so forth.
Beyond that, there are some other interventions that have individually
shown modest benefit in slowing disease progression. FIAR hopes to do
some clinical studies of combinations of these in the near future.
These include botanical agents such as Glycyrrhiza glabra, Curcuma
longa, Buxus sempervirens, Momordica charantia, Sutherlandia
frutescens, Hypoxis rooperi and other nutritional agents such as
N-acetylcysteine, alpha lipoic acid, acetylcarnitine or carnitine,
glutamine, coenzyme Q10, "pro-biotic" agents such as acidophilius,
bifidus (make your own yogurt if you can!), digestive enzymes. These
may deal with various ancillary aspects of HIV disease.
They are also not inexpensive--and maybe not available, depending on
where you live. Again, further study is needed with nearly all of
these. But several may help slow disease progression, help the gut and
organs, reduce oxidative stress--and indeed, set your body up in a way
that you may be able to minimize the development of side effects from
the drugs.
I hope these are ideas that might help you in realizing you have
choices and options. And that there are people that will help you as
well. Live your life and make YOUR choices!
George M. Carter
- Posted by GMCarter
On Sat, 23 Aug 2003 16:43:24 -0700, Brian Mailman
<bmailman@sfo.invalid> wrote:
Happily, there are other meds, like fluconazole (which Pfizer murders
people routinely by denying access in developing nations) and a
liposomal form of "amphoterrible" (amphotericin) that has
significantly fewer side effects. Ambisome, I think it's called.
George
- Posted by GMCarter
On Sat, 23 Aug 2003 13:19:35 +0200, Hayek <hayektt@nospam.xs4all.nl>
wrote:
Botswana, Namibia, South Africa...oh right, Hayek. Them niggers are
too stupid to tell time so you can wave your hands and say they're too
stupid to keep statistics and they're all living in grass huts waving
spears (as if there's anything wrong with that!)....
Stuff your stupid fucking racism, hayek.
George M. Carter
- Posted by Brian Mailman
GMCarter wrote:
Yeah, it is. "significantly fewer" I think means "lessened" in this
case. A friend's father with a lung fungus was on it and he didn't like
it. He still had the malarial fevere/chills cycle, etc. I said, "and
THIS is supposed to the improved version!" He still wasn't happy.
Fluconazole/Diflucan is a second-line strategy; they really prefer
amphoterrible here for treatment (although fluconazole for pX). When I
had crypto (and yes, linea, when I talk about the OIs and what they feel
like it's from personal experience, not someone telling me and yes, I've
had all of those at one time or another and crypto twice and PCP twice)
I made a 'deal' with the ER doc that I'd do massive fluconazole* for 24
hours and only if that didn't begin to help would I go on ampotericin-B.
*hah. I'd asked a couple times about going on it for pX, but my primary
at Kaiser at the time said, "there's no proof this strategy will work."
At least he changed his tune....
B/
- Posted by GMCarter
On Mon, 25 Aug 2003 05:10:24 +0200, Hayek <hayektt@nospam.xs4all.nl>
wrote:
,,,
By that suck up "neo-liberal" listening to some psycho, mostly white
fools like Duesberg and Ellison. And people like Natsios and Frist,
while they may believe HIV causes AIDS, have no trouble denying access
to medication by making up crap like the African people are too stupid
to tell time and thus couldn't take a few pills at different times of
the day.
Indeed, on Mbeki's side, I've always thought that he was PARTIALLY
correct, insofar as identifying poverty as an important piece of the
AIDS pandemic and disease in general (due to lack of access to care,
infections persist--not that the poor are any more likely to get a
disease like HIV than middle or upper classes). Yet he has done damned
little to offset the horrible poverty facing his country.
To my mind, the Frists/Natsios and the denialists are little
different. Deserving more indictments before the world court for the
worst form of genocide every perpetrated against a people.
As to the statistics you cite, please feel free to provide an
attribution. Other data clearly indicate mortality rates have jumped
considerably since the advent of HIV disease--and life expectancies
have plummeted.
George M. Carter
***
J Acquir Immune Defic Syndr. 2003 Jul 1;33(3):393-404. Related
Articles, Links
HIV impact on mother and child mortality in rural Tanzania.
Ng'weshemi J, Urassa M, Isingo R, Mwaluko G, Ngalula J, Boerma T,
Marston M, Zaba B.
TANESA Project, Mwanza Tanzania.
Child mortality in Tanzania rose from 137 per 1000 in 1992-1996 to 147
per 1000 in 1995-1999. Impact of HIV on child mortality is analyzed in
a longitudinal community-based study in Kisesa ward, Mwanza region.
HIV data on 4273 mothers from 3 rounds of serologic testing are linked
to survival information for 6049 children born between 1994 and 2001,
contributing 10,002 person-years of observation and 584 child deaths.
Impacts of maternal survival and HIV status on child mortality are
assessed using hazard analysis. Infant mortality for children of
HIV-positive mothers was 158 per 1000 live births compared with 79 per
1000 for children of uninfected mothers; by age 5, child mortality
risks were 270 per 1000 live births and 135 per 1000, respectively.
Fifty-one deaths were observed among child-bearing women, 14 to
HIV-positive mothers. Infant mortality among children whose mothers
died was 489 per 1000 live births compared with 84 per 1000 for
children of surviving mothers. Maternal death effects were
statistically independent of HIV status. Allowing for age, sex,
twinning, birth interval, maternal education, and residence, the child
death hazard ratio for maternal HIV infection was 2.3 (1.7-3.3);
hazard ratio associated with maternal death was 4.8 (2.7-8.4). The
HIV-attributable fraction of infant mortality is 8.3% in a population
in which prevalence among women giving birth is around 6.2%.
PMID: 12843752 [PubMed - indexed for MEDLINE]
***
Cent Afr J Med. 2001 Aug;47(8):199-203. Related Articles, Links
Trends in maternal mortality for the Greater Harare Maternity Unit:
1976 to 1997.
Majoko F, Chipato T, Iliff V.
Department of Obstetrics and Gynaecology, University of Zimbabwe, P O
Box A178, Avondale, Harare, Zimbabwe. fmajoko@healthnet.zw
OBJECTIVE: To determine the magnitude, trends and the main causes of
maternal death for Harare Maternity Hospital (HMH) and thereby
identify potential areas for interventions. DESIGN: A descriptive
retrospective analysis of maternal mortality data from the institution
included in publications and recent annual reports. SETTING:
Department of Obstetrics and Gynaecology Greater Harare Maternity
Unit, Zimbabwe. MAIN OUTCOME MEASURES: The trends in maternal
mortality ratios (MMR) and the relative importance of different causes
of death between 1976 and 1997. RESULTS: There was a decline in MMR
between 1976 and the early 1980s but there has been a steady increase
in MMR for Harare residents from 50/100,000 in 1988 to 224/100,000 in
1997. Sepsis has remained the leading cause of maternal death. There
has been a significant increase in indirect deaths due to meningitis,
tuberculosis and pneumonia where HIV infection is an underlying
factor. Avoidable factors were identified at patient/community, local
health facility and at the tertiary hospital. There has been a decline
in the quality of care in recent years. CONCLUSION: Maternal mortality
for HMH is unacceptably high and could still be rising. HIV infection
has contributed to the worsening picture. Interventions to improve
access and quality of care at all levels could lead to significant
reduction in maternal deaths.
PMID: 12808767 [PubMed - indexed for MEDLINE]
***
East Afr Med J. 2003 Jan;80(1):30-5. Related Articles, Links
Pneumocystis carinii pneumonia in HIV/AIDS patients at an urban
district hospital in Kenya.
Chakaya JM, Bii C, Ng'ang'a L, Amukoye E, Ouko T, Muita L, Gathua S,
Gitau J, Odongo I, Kabanga JM, Nagai K, Suzumura S, Sugiura Y.
CRDR, KEMRI, P.O. Box 47855, Nairobi, Kenya.
BACKGROUND: Pneumocystis carinii pneumonia has generally been regarded
to be an uncommon opportunistic infection in HIV infected individuals
in sub-Saharan Africa. The reason for this has not been clear but
postulates included a lack of suitable pathogenic types in the African
environment, diagnostic difficulties and the more commonly held belief
that African HIV infected individuals were dying early from common
non-opportunistic pathogens before severe degrees of immunosuppression
occured. Recently a trend has emerged at the Mbagathi district
hospital whereby an increasing number of HIV infected patients are
empirically treated for Pneumocystis carinii pneumonia (PCP) based on
clinical and radiological features. OBJECTIVE: To determine the
prevalence of PCP and clinical outcomes of HIV infected patients
presenting at the Mbagathi District Hospital, Nairobi with the
presumptive diagnosis of PCP. SETTING: Mbagathi District Hospital, a
169-bed public hospital in Nairobi, Kenya. METHODS: Patients
presenting with a sub-acute onset of cough and dyspnoea were eligible
for the study if they were found to have bilateral pulmonary shadows
and had negative sputum smears for AFBS. Consenting patients who had
no contraindication to fiberoptic bronchoscopy had a clinical
evaluation which was followed with a fiberoptic bronchoscopy procedure
where bronchoalveolar lavage fluid (BALF) was obtained. BALF was
examined for cysts of P. carinii using toluidine blue stain and
immunofluorescent antibody test (IFAT). BALF was also processed for
fungi, bacteria and mycobacteria using routine procedures. Standard
treatment with high dose cotrimoxazole was offered to all patients who
were then followed up until discharge from hospital or death whichever
came first. RESULTS: Between June 1999 and August 2000 a total of 63
patients were referred for bronchoscopy. Of these four declined to
undergo the fiberoptic bronchoscopy procedure, four died before the
procedure could be done, one was judged too sick to undergo the
procedure and three had been on cotrimoxazole for longer than five
days. Thus 51 patients underwent bronchoscopy. Pneumocystis carinii
stain was positive in 19 (37.2%) while death occured in 16 (31.4%) of
the 51 patients. There were more deaths in those without PCP but this
difference was not statistically significant (odds ratio 0.68 (95% CI
0.35-1.32; P=0.2). CONCLUSION: PCP was found to be common in HIV
infected patients presenting with clinical and radiological features
of the disease. The mortality rate for patients with a presumptive
diagnosis of PCP is high. This study suggests that cotrimoxazole
preventive therapy may be a useful intervention in symptomatic HIV
infected patients in Kenya for the prevention of PCP and may avert
deaths from this disease.
- Posted by GMCarter
On Sun, 24 Aug 2003 09:52:29 -0700, Brian Mailman
<bmailman@sfo.invalid> wrote:
....
I hope he recovered from the fungus!! But god, that sounds horrible.
Well, I am hopeful that you will NEVER have to go through that again.
I hope your CD4 count is high enough not to need the px?
Indeed, what we need is for the pharmaceutical companies to stop
funneling all their monies into advertising, market research and legal
departments and start doing some REAL R&D and research into so many
infectious diseases. My gut feeling is that siRNAs may yet lead the
way to novel approaches to treating such. I guess we'll see. The need
for improved antimicrobial therapy is profound.
George M. Carter
- Posted by Brian Mailman
GMCarter wrote:
No, he didn't. 
It was. What happened was that after several bouts on Ambisome and
amphotericin-b itself, and a couple lung resections he essentially gave
up.
Me too! that "sensitivity to light and sound" is about as accurate as
them asking "any discomfort?" after open heart surgery. Not to mention
the first bout of crypto was accompanied by MAC. All I would have
needed was white shoes after Labor Day for a real Fashion No.
Yah. I went off it for a while, but my primary had a fit. Said
something about it "hiding in the prostate" and waiting to recur. I
took it for a few months and then read about the pX for PCP being OK to
discontinue after cd4s rise for a certain time and determined I'd go off
it as well.
Sigh.
B/
- Posted by Nick Bennett
On Sat, 23 Aug 2003, Brian Mailman wrote:
Nice explaination - I'll have to remember that one ;-)
Bennett