[Viva] love the sharing

[Margarite Sanchez]

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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