[Viva] love the sharing

Thu Jun 2 21:23:27 PDT 2011

Hi Helena - yeah meds or menopause! good point!  Sixteen pills - whoa that's
alot! 750 is tons!  I think 750 is a great count.
Denise

On Thu, Jun 2, 2011 at 8:55 PM, Helena Locher <llocher at shaw.ca> wrote:

> 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 <dbecker106 at gmail.com>
>
> *Sent:* Monday, May 30, 2011 10:46 AM
>
> *To:* viva <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 <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 <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 <dbecker106 at gmail.com>
>
> *Sent:* Wednesday, May 25, 2011 3:23 PM
>
> *To:* viva <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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