[Viva] love the sharing

Thu Jun 2 20:01:37 PDT 2011

Margarite, would you mind sharing how long you think you have had HIV?  I am
trying to figure out what CD4s range in for different lengths of time.
Denise

On Thu, Jun 2, 2011 at 7:16 PM, Margarite Sanchez <
margaritesanchez at gmail.com> wrote:

> 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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