[Viva] love the sharing

Thu Jun 2 20:55:07 PDT 2011

I don't get as many colds as I use to and the ones I do get don't seem to
linger.  I do envy some of you your Tcel count.  My best has been 750 (which
was my last one) - it has been down to under 200.  

I love the new meds - 3 at bedtime compared to what I took at the beginning.
Sixteen pills all through the day - some with food, some without - trying to
figure out when and where to take the meds was a full time job.  

The biggest problem I have now, is that with the side effects - is it meds
or menopause?  

From: viva-bounces at lists.resist.ca [mailto:viva-bounces at lists.resist.ca] On
Behalf Of Margarite Sanchez
Sent: June 2, 2011 7:16 PM
To: viva at lists.resist.ca
Subject: Re: [Viva] love the sharing

I love the sharing too! I am especially happy when I see that some of the
women on the listserv, that don't often write, feel comfortable to speak up.
The ViVA listserv is a great forum for us to talk with each other and share
and network about things that are of interest to us. So my hope is that
everyone feels safe to do just that.

As for colds and flues, I learned early on, like Kath explained, about the
different kinds of immune responses we have and found out that without meds
the things that kill people with HIV aren't the common cold but
inter-cellular pathogens that we have all been exposed to over the course of
our life times. These pathogens aren't a problem until the immune system
gets so low that we can't mount a defense to them. I know since I have had 4
Opportunistic Infections (or OI's as they call them).

When my kids lived at home and were in school I didn't get their colds too
easily but if I did it was always a long drawn out thing. So I was pretty
neurotic about hand washing upon arrival from school and if they came down
with something they spent a lot of time isolated in their room.  

Mind you my Tcel count at it's lowest was 0, so you can imagine how
vulnerable I felt. By the way, being the miracle of modern medicine that I
am.... my last Tcel count was 1,120 !!! And it has been fluctuating in the
700- 900 range for quite awhile now.

Back to colds, if I have been exposed or feel like I might be coming down
with something, I do some preventative stuff like a salt water nasal rinse
with my Nedi pot (Highly recommended especially for anyone who gets sinus
infections!) I also use Oregano Oil, 3 drops under the tongue 3 times a day
for the first couple of days and I take my vitamins which include a multi
Vitamin, zinc,C, D, E, A and selenium. This has been working so well that in
the last three years I think I have only had one cold and it only lasted one
week. "Knock on wood" 

As for medicines and allergic reactions????.... that is another book.

love to all,

Margarite

On Tue, May 31, 2011 at 7:34 AM, Denise Becker <dbecker106 at gmail.com> wrote:

Hi Katharine:

Great to hear from a relative newcomer and thanks for the info.  I had the
"anger" reaction within three weeks of being on ritonavir but I know other
women who have been on it for a long time and my reaction was not a listed
reaction.  At first I thought it was a mid-life crisis! But then I went off
ritonavir and a month later went back on the new formulation that you don't
have to put in the fridge and I got the same reaction.  The worst thing was
the weight gain and that is a struggle for me to get off now.

I have always been a dreamer (but I'm not the only one! lol).  When I got
the news that I had HIV, my dreams turned immediately into terrible
nightmares and lucid dreams on waking... all before I went on the meds and
no worse or better since then.  I think it was the shock of getting
diagnosed because I rarely if ever got nightmares before.

Thanks for sharing.

Denise

On Mon, May 30, 2011 at 8:26 PM, katherine greene <katgreene at hotmail.com>
wrote:

hi everyone.  my name is katherine and i'm a relative newcomer to viva.
thank you all for the candid conversation on meds!  i feel drawn to share my
latest experience...

i started atazanvir, ritonavir, 3tc, tenofavir last year and was so worried
about potential side effects that i switched from atazanavir/ritonavir to
etravirine (a new NNRTI).  apparently etravirine is not supposed to cause
depression or vivid dreams like other NNRTIs, but i had dreams every night.
my latest bloodwork showed my viral load at 400 (much more than a "blip"),
so last week i switched back on atazanavir/ritonavir.  my question to
everyone is:  how long was it before you noticed side effects from
atazanvir/ritonavir?  does switching meds every couple years in order to
avoid side effects from a particular med make sense?  

thanks everyone for sharing!  kat

  _____  

Date: Mon, 30 May 2011 11:26:03 -0700
From: dbecker106 at gmail.com
To: viva at lists.resist.ca
Subject: Re: [Viva] common cold

yeah, Kath, I can take the flat ass and personally I liked myself neurotic!
- although the word they used could have been "psychotic" - nah, it was
probably neurotic hahaha.

I put on a LOT of weight on Ritonavir too and am trying to get rid of it -
why is it easy to put on and hell to take off?

D

On Mon, May 30, 2011 at 11:20 AM, Kath Webster <kathwebster at shaw.ca> wrote:

Love this discussion and especially your list of side effects Denise.  Gave
me a laugh to sum up the unwanted effects from Sustiva and RTV as simply
NEUROTIC!   I've been on both drugs too and yes, I'm extremely neurotic but
once I stopped the sustiva I had to accept that maybe, OK definitely, it
wasn't JUST the Sustiva ..... I'm still freaking neurotic!  Ha ha...

Whenever side effect discussions come up I want to balance it out with the
message that the benefits of the meds (for me) have by FAR outweighed the
side effects.  I'm talking about  'the MEDS, along with my self care, are
keeping me ALIVE & TICKING like you Denise J J  Flat ass be damned!  J

From: viva-bounces at lists.resist.ca [mailto:viva-bounces at lists.resist.ca] On
Behalf Of Denise Becker
Sent: May-30-11 11:13 AM

To: viva at lists.resist.ca
Subject: Re: [Viva] common cold

Extremely interesting Kath, I'm glad you sent that and way to go Shannon!
48% wow, NICE!  Good for you!  I sent an email to Dr. Montaner about the
whole issue, I felt a little silly sending it.. but he said the observation
was interesting and he copied his colleagues on it.

I am pretty lucky to have a 870 CD4, undetectable viral load and 38% after
22 years with HIV, so I guess I must be doing something right - I definitely
put it down to good quality vitamins.  I am very allergic to the HIV meds
though and have had to go off so many from reactions to them.  The worst was
Steven Johnson's Syndrome (believe me you NEVER want to get that) but I also
got neurotic on Sustiva and Ritonavir.  I thought I was being a very strong
person and standing up to people but apparently not! hah!

Well that is very interesting and I hope more people join in.  I will try to
remember the meds I had and their various side effects, some are not around
too much now but for a start here they are

D4T Diarrhea

Sustiva neurotic

Ritonavir neurotic

3TC stopped taking it because it was with D4T

DDI Doctors decided not a good idea because of D4T reaction

Nevirapine - Steven Johnson's Sydrome

Tenofavir - Kidney and creatinine problems

Psychological medication - pretty much allergic to everything except Celexa
and Clonazepam

Always had a problem with body shape since being on the meds - no butt! wide
back and bigger tummy.

BUT STILL HAPPY TO KEEP ON TICKING!

Denise

On Mon, May 30, 2011 at 10:55 AM, Shannon McKee Carlisle <mckee_law at msn.com>
wrote:

Hi Denise,

I believe I'm at 48%... I think. I was infected in 2001 and diagnosed in
2002. Moisture and air quality may be playing a role here in the lower
rainland. For meds, I'm on Atazanavir, 3TC, Ritonavir, and Tenofovir. I
believe I started meds in 2008. I am trying not to take antibiotics because
I don't want to deal with the fungal infections that I tend to get as a
result. I should be strong enough to fight this one off all on my own, I
hope.

Take care,

Shannon

From: Denise Becker <mailto:dbecker106 at gmail.com>  

Sent: Monday, May 30, 2011 10:46 AM

To: viva <mailto:Viva at lists.resist.ca>  

Subject: Re: [Viva] common cold

Hi everyone! 

Oh, Shannon!  Yes, of course I remember you are in Abbotsford now.  You have
a  very good CD4, how long have you had HIV? Do you know your percentage?  I
had quite a few colds in Abbotsford too before moving to Kelowna - it may be
because Kelowna is so dry.  There are so many questions I would like to ask
because I think this is interesting to know why some women are not getting
colds.  I wonder if it has anything to do with what meds you are on.  I am
on Kivexa and Atazanavir but just quit Tenofovir because it was giving me
kidney problems.  I am allergic to sulphur (spelling?) and can't have that
in any antibiotics or cold medicine that contain it... I get a rash and have
trouble breathing. 

It would be really interesting to do a survey of everyone and find out what
reactions they have had to various meds and if they have experienced any
colds.  Would any of you be interested in knowing things like this?

I am tired of research but would like to see Viva do a survey some time of
some things - we are actually a very strong organization to have so many
positive women who communicate to each other.

Thanks Shannon.

Denise

On Mon, May 30, 2011 at 8:27 AM, Shannon McKee Carlisle <mckee_law at msn.com>
wrote:

Hi Denise,

I am happy to share. I'm in Abbotsford. My counts are 1100 CD4, undetectable
viral load. Except for my high cholesterol and bilirubin, nothing else is
flagged in my blood work. My vitamin D was a little low which is of course
from a lack of sunshine. I am pretty fortunate that Dr. Burdge started me on
ARV's before my CD4 dropped below 400 that may be why my CD4 is so high, but
I'm not certain. I can't believe how loopy cold meds make me feel though....
hehehe.

Take care,

Shannon

From: Denise Becker <mailto:dbecker106 at gmail.com>  

Sent: Saturday, May 28, 2011 12:04 PM

To: viva at lists.resist.ca 

Subject: Re: [Viva] common cold

oh! that is interesting, Shannon.  I would like to ask you some questions
about where you live and what your counts are.  If you feel like replying
then do but I don't want to get too personal so if it is a problem when
don't worry about it. 

Denise

On Sat, May 28, 2011 at 11:57 AM, Shannon McKee Carlisle <mckee_law at msn.com>
wrote:

Hi Denise,

I have a runny nose, congestion, a productive cough, lots of phlegm, sore
throat, did I mention a runny nose... hehehe. I have no time for a cold, so
Tylenol Cold, Day and Night formula is my new best friend....hehehe.

Take care,

Shannon 

From: Denise Becker <mailto:dbecker106 at gmail.com>  

Sent: Thursday, May 26, 2011 7:33 AM

To: viva at lists.resist.ca 

Subject: Re: [Viva] common cold

Wow, that is a great CD4 count Shannon and your husband's is good too!  So
do you have a cold or cough or what? 

I like your ideas re. PWN, a fundraiser or part of the Walk proceeds would
be great.

Denise

On Wed, May 25, 2011 at 8:57 PM, Shannon McKee Carlisle <mckee_law at msn.com>
wrote:

I have these three teenage girls age 14, 16 and 17. Everyone has been sick
in my house for at least a month now. Everyone has been on a round of
antibiotics except me. My husband has been on his second round. His CD4 is
around 700 and mine is a whopping 1100. I am sick though I think I am just
too busy to notice. So, this year we have had two significant colds that
have caused prolonged sickness within our family, especially my husband.
Which is crappy. No flus though. I make certain that everyone gets their flu
shot every year.

I hope everyone is doing well,

Oh ya...in regards to the PWN thing .... I really don't mind if they can
make a donation; or they could potentially 'fund a by and for' project that
VIVA facilitates that would employ a positive woman; they could put on a
fundraiser for VIVA; they could advertise for increased membership to
VIVA..... otherwise.... I have personally suffered too many sleepless nights
worrying about the autonomy of this group.... I would hate to start worrying
again..... 

Love to all,

Shannon Carlisle

From: Denise Becker <mailto:dbecker106 at gmail.com>  

Sent: Wednesday, May 25, 2011 3:23 PM

To: viva <mailto:Viva at lists.resist.ca>  

Subject: [Viva] common cold

I am just wondering what other Viva members have suffered in terms of the
common cold.  Since I have been on the meds and I moved to the Okanagan in
1997, I cannot ever remember having a cold.  Has anyone else had a bad cold
or even a common cold?  I am just wondering if there is something to this.
Admittedly, I don't have children to pass one on to me! 

Denise Becker

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