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#23817 From: PozHealth@yahoogroups.com
Date: Tue Jan 1, 2008 6:19 pm
Subject: File - LIST RULES YOU HAVE AGREED TO FOLLOW
PozHealth@yahoogroups.com
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This is a monthly reminder to all

This is a group created to share information about HIV related lipodystrophy,
facial wasting, nutrition, side effects, exercise, latest treatments and
metabolic disorders and other emerging HIV health issues. It is run solely by
volunteers. Please read the following and make sure you understand what you
agree to do when joining this group.

By joining, I will abide by the following:

1- I will refrain from engaging in personal attacks on others--even if I
strongly disagree with their views.
2- I will respect the confidentiality of others.
3- I have read the mission of the list and I will post messages only on issues
that are pertinent to the list
4- I will respect people's gender, ethnicity, sexual orientation,religion, HIV
status, political affiliations, etc.
5- I will not spam the list with for profit information
6- I believe HIV is the cause of AIDS
7- I will include subject lines so others can determine the content of my
posting, and not "I have a question" or "Digest #456"
8- As a new member, I will read the previous postings on the website (using the
search feature) before I post the same question again.
9- My messages may or may not get approved by the moderator. I will accept the
moderator's best judgement and will not argue about it with him/her.
  10 - I will make every effort to snip off and edit the extraneous junk, like
yahoo ads, off of the copied text. I will edit and remove anything that doesn't
refer to the reply

I understand that if I do not comply with these requirements I may be expelled
from this list by the administrator. The administrator will not send a warning
in many cases.

IF YOU DO NOT AGREE WITH THESE TERMS , PLEASE UNSUBSCRIBE BY SENDING AN EMAIL TO
POZHEALTH-UNSUBSCRIBE@YAHOOGROUPS.COM

Thanks

#23816 From: PoWeRTX@...
Date: Mon Dec 31, 2007 5:48 pm
Subject: Happy and Healthy New Year to All
nelsonvergel
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I want to wish all of you a happy and very healthy 2008.  Thanks for helping each other since Sept 2002.
 
2007 was a good year for HIV treatment with Isentress and Celsentry approved, but a bad year for vaccine research since Merck found their vaccine to be ineffective.  We are still learning to deal with for some side effects, stigma, access problems, financial problems, increased infection rates, and long term aging issues. But we are still here and alive even when many of us thought seeing 2008 was not a remote possibility. So let's go out there and enjoy life!
 
 

Regards,

Nelson Vergel
powerusa dot org




#23815 From: RTA <mississippi_rta54@...>
Date: Mon Dec 31, 2007 10:32 pm
Subject: Fwd: Re: Insurance refusal for Isentress
mississippi_...
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This was ment to go to the group but didn't notice the address till it was to late. Sorry Travis32824 i think it only went to you. it was for the group.
Sorry again will pay attention to who's name is in the address line next time.
Thanks and again Sorry
Ralph in Mississippi

RTA <mississippi_rta54@...> wrote:
Date: Mon, 31 Dec 2007 14:24:26 -0800 (PST)
From: RTA <mississippi_rta54@...>
Subject: Re: [PozHealth] Insurance refusal for Isentress
To: Travis32824 <travis32824@...>

Don't know how it is where you live but here in Mississippi if you have Medicare part D then the Ryan White program will only give you a one month supply. and then u are on your own. i have the problem of not affording the Truvada that i am on and was told this and they only gave me a month supply witch i am out of now and have to come up with right at $200.00 for a month supply. Could use some help if anyone has any and they are not taking that drug now. email me for my address It would help greately.
Don't know what i am going to do and can't find any other help here.
I take Truvada and Viramune and have for a couple years now. I was on the Ryan White program till the Dr found out i had Medicare Part D then he took me off. so could really use any extra any of you might have if u have been taken off Truvada and not taking it an more.
Being on fixed income SSD and with also heart problems and having to get those meds it is just out of my reach with the money. i am undeticitable and VL is in the 300's.
I have been that way for over 6 years and am wondering what or how long i would last if i came off the meds compeletely except the heart meds that i know i can't stop. but for the HIV meds i may not have a choise. either that or cut way back on food.
Thanks for listning.
Ralph in Mississippi

Travis32824 <travis32824@...> wrote:
On my Medicare Part D plan, Isentress wasn't on the formulary for 2008, because it just got FDA approval. However, I asked my Plan to make an exception to cover Isentress, and they are going too. The doc had to fill out a form stating medical necessity, etc. But, to cover all bases, I called Isentress Patient Assistance Program, and got approved for that, so they'd give it to me for free (its based on income levels). So now, I'll have 2 bottles, one free, and one is $5.50.
I have a feeling that your insurance simply did not have it on their formulary, and you may have to ask for forms for them to make the exception until it does go onto the formulary. Be forewarned, this process takes a few weeks.
If you desperately need it now, I'd contact your local AIDS Service Organization. Ryan White funds is supposed to cover meds as "a last resort".
I bet you get the approval.
Travis

fredsdadus2001 <fredsdadus2001@yahoo.com> wrote:
Just before Christmas my doc exchanged my Videx for Isentress. My
insurer, Tufts, has refused to cover the perscription. What recourse do
I have to counter this rejection? The nurse in my doctor's practice was
contacting Tufts but because of the holidays I haven't gotten a
response yet. Has anyone else in the group had a rejection for
Isentress? I've never had a problem with Tufts before.
Thanks in advance for your help.
Craig G.



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#23814 From: BryanColeSmith@...
Date: Mon Dec 31, 2007 4:59 pm
Subject: a great volunteer opportunity
bryancolesmith
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TO:  AIDS Clinical Trials Group (ACTG) Principal Investigators, Study Coordinators,

         Community Advisory Board Liaisons, CAB members, HIV treatment community

 

FROM:  William Royce Hardin, Co-chair New Member Selection Committee

                Nathaniel Johnson, Co-chair New Member Selection Committee

DATE:  December 3, 2007

 

SUBJECT:  Winter 2007 – 2008 Solicitation for ACTG NCAB Applications

The ACTG Network Community Advisory Board (NCAB) is accepting applications for membership. The NCAB seeks qualified individuals from U.S. and International ACTG sites to apply for membership. The composition of the NCAB is mandated to reflect the impact of the domestic and international HIV epidemic in the areas served by the ACTG network. HIV positive people, HIV community advocates, MSM, men and women of color, and young adults are encouraged to apply. Experience participating in ACTG Community Advisory Boards (CAB’s) is looked upon favorably in the application process. All applicants must possess a fundamental knowledge of HIV disease and treatment issues. All applicants must demonstrate proficiency in the English language. Reliable access to the Internet and a computer are required.

NCAB members are expected to advocate for community issues as part of protocol teams, resource committees and in leadership roles. The NCAB applicant should expect to devote up to 10 hours a week on conference calls, committee assignments and reviewing e-mail. NCAB members are required to attend up to three face-to-face conferences (3-6 days each) annually. NCAB members commit to a three-year term with an option of one additional year of service.

The application is available on the ACTG Website; (http://aactg.s3.com/ncabinfo.htm#Membership) Applications are also available from Allegra Cermak, NCAB/GCAB Coordinator, ACTG Operations Center, at 877-658-2624, or 301-628-3312, or by e-mail at "acermak@...". The application includes a current NCAB Member Job Description.

APPLICATIONS MUST BE SUBMITTED ELECTRONICALLY OR TYPEWRITTEN AND RECEIVED NO LATER THAN 4:00PM EST, FRIDAY, JANUARY 18, 2008 at the office of Allegra Cermak, NCAB/GCAB Community Coordinator at the above mentioned e-mail address, by fax at 301-628-3302, or by mail at: ACTG Operations Center, Social & Scientific Systems, Inc., 8757 Georgia Avenue, Silver Spring, MD 20910-3714.

All applications meeting submission guidelines will be considered. Members of the NCAB New Member Subcommittee will interview selected applicants. Please review the application and instructions carefully. Please direct any questions on the application process to Allegra Cermak, at 877-658-2624, or 301-628-3312, or by e-mail at "acermak@...".

 






**************************************
See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

#23812 From: "Jason Thomas" <malebeyo@...>
Date: Mon Dec 31, 2007 7:48 pm
Subject: Would you stay off meds if your T-Cells went under 200?
malebeyo
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If you are healthy with no OI's and not sick and your T-Cells
went under 200 did you always go on meds or are those that
stayed with their natural therapies to keep them well? I'm
struggling with that now and need to decide what do do because
I'm not sick and not on meds but my T-Cells are between 150-200
with viral load at 93,000.
Am I crazy for not going on the meds yet?
Thanks for your thoughts.
JT.

#23811 From: "jim98122x" <jim98122x@...>
Date: Mon Dec 31, 2007 6:15 pm
Subject: Re:Tingling tongue, testosterone cypionate
jim98122x
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I thought I'd read (several times) exactly the opposite of this--  I.E., that most research suggests hormone replacement does NOT actually cause prostate cancer, but may accelerate its growth if it's developing anyway...? 


--- In PozHealth@yahoogroups.com, "guyinsouthala@..." <guyinsouthala@...> wrote:
>
> I started taking Test. cyp. about 2 months ago, and I love the results (for fatigue). I just learned, however, from the friend who made me aware of the benefits of testosterone supplementation, that he has prostate cancer. He's young (45 or 50), so he and his doc are pretty sure it's because of the testosterone injections and gels he's taken over the years.
>
> I was warned before I started taking it that prostate cancer is a possible side effect, so now I'm wondering if it's worth it. I might go off it in a few months.
>
> S.


#23810 From: "jetonxxx" <jeton@...>
Date: Mon Dec 31, 2007 6:06 pm
Subject: Re: Blood Return, testosterone cypionate
jetonxxx
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i have been giving myself injections in the upper outer quadrant of
each ass cheek, alternating left to right each different week, for 13
months now. up until last month i was using 1" needles (18ga to draw,
22ga to inject) but i found over time the test 'kick' had lessened.

i actually bothered to inspect my ass and realized that the weight
i'd put on over the last year included fat with the xtra muscle, and
i have a 1" thick pad of fat covering the glutes. basically the only
penetration into the muscle i was achieving was due to pressing the
1" needle an extra half inch into the flesh, whihc made it harder to
withdraw.

in the last month i've switched to 1.5" needles, i still push in a
little extra past the surface (the skin indents) but not as hard as i
would with the shorter ones. the 'kick' is back, ALMOST feeling like
i just started test now. there's a growing pack of poz bottoms in nyc
who can attest to that. ;)

the convenience key has been the double-mirror setup in my bathroom,
it allows me to id a precise spot in the upper outer quadrant that's
safely distant from the sciatic nerve, keep tabs on it as i wipe with
91% isopropyl alc, always making sure the injectable is free of
bubbles. also, AT ALL POINTS every thing is clean and as sterile as
possible...i wipe the vials with alc b4 n after withdrawing, my hands
r washed, and everything is laid down on a fresh paper towel. ****the
biggest difficulty over time has proven to be ensuring that u keep
the needle steady when pushing the piston in...this can be difficult
when the piston is all the way out due to a fully loaded syringe and
ur bending around looking in the mirror, and pushing the needle side
to side can injure u (my biggest terror is breaking the needle off
inside my flesh...even if the greatest-but-not-likely danger is death
from air bubbles or random infection).

in general, taking the procedure seriously and treating every
injection as my first has kept my technique uniform and ensured i
havent had any problems in 13 months of exclusive self-injection.



as for tongue-tingling, i would ask 'what meds r u on?". when i was
on sustiva/combivir, among the many weird sensations i developed was
the feeling that there was a little flap of flexible plastic (like
the inserts that keep the points of cheap dress shirts pointy)
nestled against the side of my tongue. i'd literally just be walking
talking or hanging out and get that distinct n bizarre sensation.

i started reyataz in 11/04 with some weirdness, but ever since i
boosted it with norvir in 10/05, i've been over-salivating. it's a
biut embarrassing, as if i sleep at someone's house there's a better
than even chance i'll drool all over their pillow, and i have to be
careful in close personal conversation, because if i get too
enthusiastic my audience may complain they got a droplet or two,
whihc is horrifying. it's a weird way to become more mellow.

my point is that HIV meds are far more systemically powerful than
test and can have lots of itty bitty side-effects that may vary from
person to person and not always be picked up in studies.


--- In PozHealth@yahoogroups.com, NJBlueiii@... wrote:
>
> Justin,
>
>      The generic testosterone cypionate, in itself has no
indication in the current literature that a "tingling tongue" in the
mouth, in particular, is a sign of hyprersensitivity or a side
effect, however it does note under the topic of "skin" there can be
hypersensitivity signs & symptoms, perhaps this was simpy a side
efect, not an adverse reaction, to the administration, most side
efects will dissipate after 10 - 14 days of regular dosing (I do not
know your doising schedule)....this med is supposed to be injected
deep IM (inter muscular) in the upper outer quadrant of the dorsal
gluteal muscle (yes, the ass), the danger here is hitting the sciatic
nerve, I don't know if perhaps you grazed the sciatic, you give no
indication of where you injected yourself, as an RN & as a patient
myself it is IMPOSSIBLE to inject this yourself in the DG
independently, it would be dangerous for you to do so as well as
hitting the sciatic is a no-no & can cause many other problems
including some
> nasty pain & some paralysis (a trained person, family/friend etc,
or an RN/LPN should be doing this for you), if you hit the sciatic
directly I guarantee you will know it....hopefully wherever you did
do the injection you did a deep IM, the anterior thigh if you have
muscle there is appropriate most times, but check first (call the
drug manufactureres 800 number on the box's label & ask the
pharmacist there where there are injection site appropriate for this
medication, those pharmacists are always happy to lend
assistance)....remember to keep this medication at room temp, take it
out of the fridge about 20 or so mins prior to self
administration....if it is to cold & there is not enough time to warm
it then roll it between your plams briskly for about 45-60 secs &
that sould do the trick, do not shake the med as it will add oxygen
to the solute & you are better off not doing that as the O2 may
increase injection pain & if you accidentally get enough O2 into the
circulatory system
> via a vein or artery, well need I say more?, you NEVER want to
inject any amy of O2 into the circulatory system as an air embolous
can develop & be fatal....also look for crystallization of the med,
if that appears you also want to roll the med to dissolve the
crystals, remember no matter what you read do not SHAKE any liquid
meds that come as injectibles....SAFETY FIRST!!!....
>
>      ....likley when you did the injection you probably hit a vein
as muscle tissue is well vascularized, but your still alive &
breathing now & that is most important....
>
>      ....my other suggestion to you is to get an order from the
physician for VNA (Visiting Nurse Associatioon) to come out to your
house to teach you how to self administer this particular
medication....they will administer it for you a few times & teach you
over the course of a few visits to teach you self administration....
>
>      ....if you live in the Northern part of NJ or NYC I can come
over to teach you how to do this injection safely....let me know if
you live in the area & we can connect....I would be happy to help....
>
>

        Michael RN, Montclair, NJ
>

#23809 From: "Michael" <michael@...>
Date: Mon Dec 31, 2007 4:40 pm
Subject: Carotid Intima-Media Thickness Predicts Future CV Risk
michaelmedib...
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Carotid Intima-Media Thickness Predicts Future CV Risk
http://www.medscape.com/viewarticle/551469

Sue Hughes

Heartwire 2007.  2007 Medscape

January 30, 2007 (Frankfurt, Germany) - Confirmation that carotid
intima-media thickness (IMT) is a reliable predictor of future risk of
cardiovascular events has come from a new meta-analysis [1]. The
meta-analysis, published online January 22, 2007 in Circulation, found
that carotid IMT is a strong predictor of both stroke and MI.

The authors, led by Dr Matthias Lorenz (Johann Wolfgang
Goethe-University, Frankfurt, Germany), explain that as carotid IMT
can be measured relatively simply and noninvasively, it is well-suited
for use in large-scale population studies and it is increasingly being
used for risk stratification in individuals and as an end point in
intervention studies. But an important precondition for this
application of IMT is that it can predict future risk of clinical
vascular events. They note that a number of longitudinal studies have
examined the relationship between IMT and future events, but different
studies have used different measurement methods and studied different
populations. Furthermore, some studies have investigated relatively
small populations, which resulted in large confidence intervals for
the risk estimates. To gain more robust estimates of the predictive
value of increased IMT for clinical cardiovascular end points, they
carried out a meta-analysis of these studies.

They reviewed data from eight studies, with a total of 37 197 subjects
who were followed up for a mean of 5.5 years. Results showed that
after adjustment for age and sex, increased carotid IMT was associated
with increased risk of both MI and stroke.
Relative risk of MI and stroke with increases in carotid IMT

Risk of                                  Relative risk 95% CI

MI per standard deviation IMT difference 1.26           1.211.30

MI per 0.10-mm IMT difference            1.15           1.121.17

Stroke per standard deviation IMT difference 1.32       1.271.38

Stroke per 0.10-mm IMT difference        1.18           1.161.21

"With data of 200 000 person-years in eight studies, the results of
this meta-analysis improve the precision of estimating the risk that
is associated with IMT," the researchers write. "For an absolute
carotid IMT difference of 0.1 mm, the future risk of MI increases by
10% to 15% and the stroke risk increases by 13% to 18%," they report.

In an interview with heartwire, one of the authors, Dr Hugh Markus (St
George's University of London, UK), said this study should increase
confidence in carotid IMT as a measure of future risk of
cardiovascular events. "With the large population included in this
meta-analysis, we can be much more certain exactly how carotid IMT
measurements relate to future risk. If you are going to use a marker
as an end point in clinical trials, you have to have robust data on
how it relates to risk, and now we have such data."

Markus said this study confirms that carotid IMT is a suitable end
point for studies of potential new antiatherosclerotic drugs, and it
can also be used to predict risk in health screening. "The carotid
artery is simple to visualize with an ultrasound scan, as it is so
close to the skin surface, so that a clear measurement of IMT can be
seen very easily, and this study suggests that thickening of this
artery wall by atherosclerosis is a good indicator of what is going on
in the vasculature generally," he added.

    1. Lorenz MW, Markus HS, Bots ML, et al. Prediction of clinical
cardiovascular events with carotid intima-media thickness a systematic
review and meta-analysis. Circulation 2007; 115:459-467.

#23808 From: JuLev@...
Date: Mon Dec 31, 2007 10:47 am
Subject: NATAP: Jaw Osteonecrosis/Bisphosphonates Risk?
jules72orange
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Osteonecrosis of the Jaw - Do Bisphosphonates Pose a Risk?

NEJM Nov 30, 2006
John P. Bilezikian, M.D.

Nitrogen-containing bisphosphonates are used widely for the management of metastatic cancer in bone (intravenous zoledronic acid or pamidronate), for the prevention and treatment of osteoporosis (oral alendronate, risedronate, and ibandronate and intravenous ibandronate), for the treatment of Paget's disease of bone (intravenous pamidronate and oral alendronate and risedronate), and for the short-term management of acute hypercalcemia (intravenous zoledronic acid and pamidronate). The nitrogen moiety attached to the side chain of the middle carbon of the phosphorus-carbon-phosphorus bisphosphonate backbone renders these drugs much more potent as inhibitors of bone resorption than the bisphosphonates that do not contain nitrogen (etidronate and clodronate). Bisphosphonates reduce the survival and function of osteoclasts, the bone-resorbing cells. These antiresorptive actions largely account for the drugs' efficacy in conditions in which the rate of bone resorption exceeds the rate of bone formation.


Until recently, the only adverse events of substantial consequence associated with the nitrogen-containing bisphosphonates were upper gastrointestinal intolerance (with oral administration) and a short-lived acute-phase reaction characterized by fever, myalgias, and an influenza-like syndrome (with intravenous administration). Now another potential complication of these agents - osteonecrosis of the jaw - has surfaced.

Osteonecrosis of the jaw is characterized clinically by an area of exposed bone in the mandible, maxilla, or palate that typically heals poorly or does not heal over a period of 6 to 8 weeks. The diagnosis is primarily a clinical one, but imaging studies such as computed tomography can be helpful (see images). This condition in connection with bisphosphonate use was first reported in 2003, or 5 to 10 years after these drugs were approved in the United States for their current indications; it was rarely seen before then. Most of the reported cases (95%) have been associated with zoledronic acid or pamidronate given intravenously to control metastatic bone disease.1,2 When these drugs have been administered intravenously in patients with cancer, the reported incidence of osteonecrosis of the jaw has ranged from 1.3% in a preliminary retrospective survey3 to 4 to 7% in another report.1 Myeloma and breast cancer are by far the most common cancers associated with intravenous bisphosphonate use and osteonecrosis of the jaw.1

Predisposing factors for the development of osteonecrosis of the jaw appear to be dental disease, dental surgery (e.g., tooth extraction), oral trauma, periodontitis, and poor dental hygiene. Treatment with chemotherapy or corticosteroids is also common among affected patients. The lesion is painful in many, but not all, patients, and infection is often present. Approximately two thirds of cases involve the mandible and the rest involve the maxilla. In one unusual case, osteonecrosis of the external auditory canal developed in a patient with myeloma who had received intravenous zoledronic acid and pamidronate.4

Typically, patients in whom osteonecrosis of the jaw develops have been receiving intravenous bisphosphonate therapy for 1.5 to 3 years. With conservative management (minimal surgical dbridement, rinses with cyclohexidine or hydrogen peroxide, antibiotics, and analgesics), the lesions usually heal, although some cases of osteonecrosis of the jaw have become chronic and some patients have had complications.

For metastatic cancer, the doses of nitrogen-containing bisphosphonates are typically 4 to 12 times as high as those used to treat osteoporosis. Whether lower doses can be used effectively to control metastatic bone disease is a matter for further study. Osteonecrosis of the jaw has developed far less often among patients who have received oral bisphosphonates at the lower doses used for osteoporosis than among patients who received the higher doses used for metastatic cancer. Among several million patients who have received oral treatment for osteoporosis, fewer than 50 cases of osteonecrosis of the jaw have been reported to date.1 Moreover, with more than 60,000 patient-years of exposure to nitrogen-containing bisphosphonates in clinical trials of treatment for osteoporosis (involving follow-up for as long as 10 years in some patients), osteonecrosis of the jaw was not reported among the adverse events. Unpublished post-marketing surveillance data are also consistent with the infrequent occurrence of osteonecrosis of the jaw among persons being treated for osteoporosis.

On the one hand, given that not all reported cases have been confirmed to be osteonecrosis of the jaw, and on the other hand, that there may be underreporting, 1 in 100,000 patient-years is a reasonable estimate of the incidence of osteonecrosis of the jaw in patients receiving oral nitrogen-containing bisphosphonates for osteoporosis. Fewer than five cases of osteonecrosis of the jaw have been reported among patients with Paget's disease of bone that was being treated with nitrogen-containing bisphosphonates.

Because the estimate of the incidence of osteonecrosis of the jaw is based on incomplete data, well-designed prospective cohort studies with rigorous case-ascertainment criteria as well as documentation of risk factors and risk modifiers are needed.5 The Food and Drug Administration now requires a precaution regarding osteonecrosis of the jaw in package inserts for all nitrogen-containing bisphosphonates.

If there is a relationship between bisphosphonates and osteonecrosis of the jaw, what might explain it? The jaw is often subject to spontaneous, local trauma as well as trauma caused by dental procedures. The mucosa of the mouth is very thin and may therefore permit unroofing of the alveolar bone immediately beneath it when trauma or infection occurs. As potent inhibitors of osteoclast activity, the nitrogen-containing bisphosphonates might retard skeletal repair processes associated with trauma to or infection of the oral mucosa that involves the underlying bone. Since the jawbones are in constant use and are characterized by active remodeling, bisphosphonates might accumulate there preferentially, resulting in concentrations that exceed those found elsewhere in the skeleton. Other potential mechanisms include the possible antiangiogenic effects of nitrogen-containing bisphosphonates and the effects of these agents on T-cell function.

The fact that the majority of reported cases of osteonecrosis of the jaw are associated with the use of high-dose intravenous bisphosphonates for metastatic bone disease suggests that the dose,
duration of treatment, and route of administration, as well as coexisting conditions, concomitant treatments (glucocorticoids or immunosuppressive agents), and dental health, could all be related to the incidence of this complication. The use of bisphosphonates for osteoporosis in doses that are much smaller than those used for metastatic bone disease is consistent with the current view that osteonecrosis of the jaw is much less common in this setting. In Paget's disease of bone, bisphosphonate therapy is even more limited and osteonecrosis of the jaw is truly rare.

The possibility that the risk of osteonecrosis of the jaw may be increased with the duration of therapy has led some to emphasize the need for a "drug holiday" for patients who are being treated with bisphosphonates for osteoporosis - perhaps a 1-year period without bisphosphonate therapy after 5 or more years of treatment. Clearly, more research is needed to clarify the magnitude and basis of the risk of osteonecrosis of the jaw associated with the dose of bisphosphonates and the duration of their use.

In the meantime, how should clinicians respond? The documented benefits of using bisphosphonates for established indications clearly outweigh whatever small risk of osteonecrosis of the jaw might be incurred. To withhold bisphosphonate therapy from patients who are at high risk for progressive metastatic bone disease, osteoporotic fractures, or complications of Paget's disease seems to me to be the wrong call.

At the same time, we must inform our patients about the risk of osteonecrosis of the jaw. Patients should be advised to see their dentists before beginning intravenous bisphosphonate therapy so that their dental hygiene can be optimized and any necessary procedures can be performed in advance. Patients who are to receive oral bisphosphonates should also follow a regular program of oral health maintenance. Routine dental hygiene is important; this point should be emphasized, given that some dentists are reluctant to provide even routine oral health care for patients who are taking bisphosphonates. Such reluctance, however, seems unwarranted.

Although there is no reason to stop bisphosphonate treatment for patients who are about to receive routine dental care, there is a debate about whether treatment should be withheld temporarily when more invasive dental care, such as a surgical procedure, is needed. Given the long half-life (measured in years) of bisphosphonates in bone, whether temporary cessation of treatment with these agents would reduce associated risks is not known; this question warrants study. For patients who are receiving bisphosphonate therapy for cancer and who are to undergo a major dental procedure, it seems reasonable to continue therapy in order to maximize control of the underlying malignant disease. For patients who are being treated for osteoporosis, however, it is unclear whether bisphosphonate therapy should continue or should be stopped until healing after the dental procedure is complete. Opinions, but little data, can be advanced for both approaches. It is generally agreed that one should use caution in recommending elective, invasive dental work such as dental-implant surgery in patients who are receiving nitrogen-containing bisphosphonates. Patients should contact their dentists if tooth or jaw pain develops while they are receiving such therapy.

As always, physicians and patients must carefully weigh the benefits and risks when considering drug treatment. For patients with recognized indications for nitrogen-containing bisphosphonates, using these agents is likely to do far more good than withholding them.

Dr. Bilezikian reports receiving consulting or lecture fees from Merck, Procter & Gamble, Sanofi-Aventis, GlaxoSmithKline, Roche, Lilly, Transpharma, Radius, and NPS Pharmaceuticals. No other potential conflict of interest relevant to this article was reported.


Source Information

Dr. Bilezikian is a professor of medicine and pharmacology at the College of Physicians and Surgeons, Columbia University, New York.

References

   1. Woo SB, Hellstein JW, Kalmar JR. Bisphosphonates and osteonecrosis of the jaws. Ann Intern Med 2006;144:753-756. [Erratum, Ann Intern Med 2006;145:235.] [Free Full Text]
   2. Marx RE, Sawatari Y, Fortin M, Broumand V. Bisphosphonate-induced exposed bone (osteonecrosis/osteopetrosis) of the jaws: risk factors, recognition, prevention, and treatment. J Oral Maxillofac Surg 2005;63:1567-1575. [CrossRef][ISI][Medline]
   3. Hoff AO, Toth B, Altundag K, et al. Osteonecrosis of the jaw in patients receiving intravenous bisphosphonate therapy. J Bone Miner Res 2005;20:Suppl 1:1218-1218.
   4. Polizzotto MN, Cousins V, Schwarer AP. Bisphosphonate-associated osteonecrosis of the auditory canal. Br J Haematol 2006;132:114-114. [CrossRef][ISI][Medline]
   5. Shane E, Goldring S, Christakos S, et al. Osteonecrosis of the jaw: more research needed. J Bone Miner Res 2006;21:1503-1505. [CrossRef][ISI][Medline]

This article has been cited by other articles:

    * Shaw, N J (2007). Osteoporosis in paediatrics. EDUCATION AND PRACTICE 92: 169-175 [Full Text] 
    * Ruggiero, S.L., Drew, S.J. (2007). Osteonecrosis of the Jaws and Bisphosphonate Therapy. J. Dent. Res. 86: 1013-1021 [Abstract] [Full Text] 
    * Aapro, M., Abrahamsson, P. A., Body, J. J., Coleman, R. E., Colomer, R., Costa, L., Crino, L., Dirix, L., Gnant, M., Gralow, J., Hadji, P., Hortobagyi, G. N., Jonat, W., Lipton, A., Monnier, A., Paterson, A. H. G., Rizzoli, R., Saad, F., Thurlimann, B. (2007). Guidance on the use of bisphosphonates in solid tumours: recommendations of an international expert panel. Ann Oncol 0: mdm442v1-mdm442 [Abstract] [Full Text] 
    * Brown, J. E., Ellis, S. P., Lester, J. E., Gutcher, S., Khanna, T., Purohit, O.-P., McCloskey, E., Coleman, R. E. (2007). Prolonged Efficacy of a Single Dose of the Bisphosphonate Zoledronic Acid. Clin. Cancer Res. 13: 5406-5410 [Abstract] [Full Text] 
    * Shenker, N. G., Jawad, A. S. M. (2007). Bisphosphonates and osteonecrosis of the jaw. Rheumatology (Oxford) 46: 1049-1051 [Full Text] 
    * Shoback, D. (2007). Update in Osteoporosis and Metabolic Bone Disorders. J. Clin. Endocrinol. Metab. 92: 747-753 [Abstract] [Full Text]



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#23807 From: JuLev@...
Date: Mon Dec 31, 2007 9:41 am
Subject: NATAP: Treatment for Bone Loss: What Are Bisphosphonates?
jules72orange
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Treatment for Bone Loss: What Are Bisphosphonates?

Bisphosphonates are medications used to treat diseases which result in weakened bones; most commonly these diseases include osteoporosis, osteopenia, or bone cancer.  Bisphosphonates typically remain in the bones for a long time after they are used—from decades to a lifetime. Fosamax (Alendronate), Actenol (Risendronate), and Boniva (Ibandronate) are the oral forms of this drug, and are used most commonly for osteoporosis.  Zometa (Zolendronic acid) and Aredia (Pamidronate) are the intravenous forms, most commonly used to treat cancer involving the bones.

Fosamax and Actonel are the most commonly prescribed bisphosphonates, with about 23 million combined prescriptions in 2003.  Aredia and Zometa are far more uncommonly used.  Bisphosphonates are very effective in helping to prevent fractures of the hips and backbones associated with osteoporosis.  They are also very helpful in preventing fractures and pain associated with cancer in the bones.

What is their relationship to teeth, and what is jawbone death?

Bisphosphonates appear to slow the natural process of removal and replacement of bone, which for the repair process of bone in the jaws is vital; this change in rate of healing of the jaw appears to be related to jaw bone death.  Jaw bone death results in pain, changes in bone structure that can be seen via x-ray, spicules of bone protruding through the gums or skin, sloughing of pieces of bone, and sometimes drainage of pus. In 2004, the first cases of bisphosphonate-related jawbone death were reported; by 2007, there were over 4000 reported cases.

What are the risk factors for BRONJ?

The following factors are risk factors for Bisphosphonate-related jaw bone death (BRONJ): the use of intravenous forms of bisphosphonates (which have a greater risk factor than the use of oral bisphosphonates, though there is still a risk with oral use), long-term bisphosphonate use, extractions or gum surgery, naturally sharp bones of the jaw, dental infections, age, concurrent cancer, concurrent osteoporosis.

The following factors are thought to be contributing risk factors for BRONJ: Corticosteriod therapy, diabetes, smoking, alcohol use, poor oral hygiene, and chemotherapeutic drugs.

Most BRONJ cases are associated with the use of intravenous forms of bisphosphonates (in as many of 12% of people using the intravenous forms).  BRONJ seems to occur less in those taking the oral forms of bisphosphonates, estimated at 1 in 100,000 people per year. 

BRONJ can occur spontaneously, for no reason, but is often associated with abscessed teeth or periodontal (gum) disease.  In other words, people who are taking bisphosphonates can develop BRONJ without having a dental procedure, but they have more of a risk of developing BRONJ if they have certain oral conditions.  BRONJ can be associated with dental procedures, including extractions, root canals, gum surgery, and implants.  One study suggests that people on Fosamax have between a 1 in 300 and 1 in 1100 chance of developing BRONJ after an extraction.  A study of about 120 cases of BRONJ, 40% were associated with having a tooth removed.  
  
How can I prevent BRONJ? 

Prior to starting bisphosohonates, or within the first 3 years of being on bisphosphonates, getting your mouth in great shape and removing any problematic teeth is felt to be prudent.  An evaluation by your dentist can help you plan extractions, root canals and gum procedures before being on a bisphosphonate, before there may be a risk for developing BRONJ. 

After being on bisphosphonates for more than 3 years, if systemic conditions permit, a “drug holiday” of 3 months before and 3 months after a procedure may be helpful.  This should all be done in consultation with your physician.

Can BRONJ be treated?

At present, there is no cure for BRONJ: only treatment to reduce infections, remove sharp areas of exposed bone, and prevent progressive loss of other teeth.  As said before, BRONJ has no cure, and the sloughing of bone can be ongoing.
Treatment strategies having to do with oral surgery:
     •      For patients about to start intravenous bisphosphonates, non-restorable teeth or bad teeth should be removed.  This is because the majority of people experience BRONJ after dental-related surgeries.  Also, if systemic conditions permit, the bisphosphonate therapy should be delayed until the extraction site is healed (mucosalized)
     •      For patients who are already receiving intravenous bisphosphonates and who show no symptoms of BRONJ, it is very important to maintain good oral hygiene and dental care so as to prevent the need for dental-related surgeries.  Patients should avoid oral, bone invasive surgeries.  Nonrestorable teeth can be treated by removing the crown and endodontically treating the remaining roots.  It is recommended that these patients avoid placement of dental implants.
     •      Patients already receiving oral bisphosphonates who show no symptoms of BRONJ and have taken bisphosphonates for less than 3 years are not advised to make any changes in any planned surgeries.    If these patients have implants placed they should be assigned to a regular recall schedule. 
     •      For patients who have taken an oral bisphosphonate for less than 3 years and have also been taking corticosteroids at the same time, the doctor who is prescribing their oral bisphosphonates should be contacted to consider prescribing a bisphosphonate “drug holiday” for at least 3 months prior to oral surgery, if systemic conditions permit.  The same treatment is advised for patients who have taken an oral bisphosphonate for more than 3 years, with or without any accompanying prednisone or other steroid.  In both cases, after oral surgery is performed, the bisphosphonate should not be restarted until healing of the bone has occurred.
     •      For patients who have an established diagnosis of BRONJ, treatment revolves around the objectives of eliminating related pain, controlling infection of the soft and hard tissue, and minimizing the progression or occurrence of bone death.  As said before, BRONJ cannot be cured.

So should I not use a bisphosphonate?

The decision to use a bisphosphonate should be made after you have discussed your needs with your physician, and the alternatives that are available.  Bisphosphonates are very effective in the treatment and management of cancer-related conditions, as well as in the treatment of osteoporosis and osteopenia.  The use of bisphosphonates is expected to increase two and a half fold by the year 2011, as compared with the year 2004.  These drugs are very effective in treating bone weakness. 

The bottom line: While the above recommendations for prevention are based on expert opinions, much research still needs to be done regarding prevention of BRONJ and any possible cures.  While BRONJ is rare, especially in the use of bisphosphonates in the oral form, at present there remains no cure for BRONJ, and the effects of the drugs may be irreversible and destructive. 



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#23806 From: Kautex Textron <kautex_textron@...>
Date: Mon Dec 31, 2007 2:29 pm
Subject: 90 day HIV test. Are they worthy?
kautex_textron
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Are the 90 day HIV test worthy? Especially after sex 90 days ago. Accuracy?
 
                                                        Keith


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#23804 From: "guyinsouthala@..." <guyinsouthala@...>
Date: Mon Dec 31, 2007 9:44 am
Subject: Re:Tingling tongue, testosterone cypionate
guyinsouthala
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I started taking Test. cyp. about 2 months ago, and I love the results (for fatigue).  I just learned, however, from the friend who made me aware of the benefits of testosterone supplementation, that he has prostate cancer.  He's young (45 or 50), so he and his doc are pretty sure it's because of the testosterone injections and gels he's taken over the years.

I was warned before I started taking it that prostate cancer is a possible side effect, so now I'm wondering if it's worth it.  I might go off it in a few months.

S.


guyinsouthala@...








guyinsouthala@...


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#23803 From: "Bill Gaul" <wgaul1@...>
Date: Mon Dec 31, 2007 5:05 am
Subject: Re: Re : HRA and ASCUS diagnosis
upstatedv8
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I'd suggest just keeping an eye on it for now. I think barely anyone recommends action until there's evidence of high grade squamous lesions. I've come up with low grade squamous (LGSIL) before and had it disappear, only to turn up again a few years later. I don't know if it went away or just wasn't detected in between, but I've been to an anal/rectal surgeon who won't even do anything until it reaches cancer, since he says it's not a risk! I'm not that cavalier about it, but I'll wait until I find high grade squamous and find someone who will do an infrared laser procedure. Until then, I understand how hard it is not to worry (if only I could have gotten ahead of HIV before I developed illness!) Seems we have a job like we did in the 80's, convincing healthcare professionals to take us more seriously. HPV is turning up as a nastier virus than anyone ever thought - and not just in cervixes.
 
BG
 
 
 
Had my 2nd HRA at owen's clinic. . Dr. Copernicus ( spelling??)  called and said my diagnosis was ASCUS.. which is aytpical squamos cells of undetermined significance .. This is my 2nd yearly HRa with this diagnosis.. The doc says that after 3 years with a ASCUS diagnosis the risk is very very low and even now 95% of people will not go on to high grade.. MY question is what do I do now? nothing? go to another specialist? I called back Owens Clinic and told them to tell Doctor  Copernicus to send the specimen to another pathologist  for a second opinion.  I haven't gotten his response to this request as it was just 30 minutes ago.. He just wants to do another HRA in 1 year.. Should I be nervous? I know the doc isn't  alarmed because last year he didn't even tell me I had a ASCUS diagnosis.or he might have said no real problem.. just watchful waiting... Any ideas??  thanks.. luke





#23802 From: tim pearce <munkybizness37@...>
Date: Mon Dec 31, 2007 3:27 am
Subject: (No subject)
munkybizness37
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Hey guys....any of you with hiv, reactive hypoglycemia and using anabolics?
Id like to hear from any of you for some information, support, etc.
 
Tim
Lafayette LA


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#23801 From: solarjerom@...
Date: Sun Dec 30, 2007 10:15 pm
Subject: Re: scared about Fuzeon injections
solarjerom
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This is good advice.  I am not (yet) on Fuzeon, but I am diabetic and self inject every day.  The short fine needles are the way to go.  I think that my insulin needles are 31 gauge, and most of the time there is no pain at all.  Sometimes there is a slight pin prick sensation.
 
Be sure to clean your skin carefully with alcohol swabs just before injecting.  Have a nurse show you how to self inject.  "Pinch an inch" of belly fat is the usual way.
 
Instead of paying a fortune for sharps containers, you can purchase a small device that clips the needle off of the barrel and automatically stores it in a sealed container.  These devices cost about $5 and hold around 300 needles.  You can throw them in the trash when they are full, since they are virtually impossible to open and the needles would be useless in any case.
 
Here is some info on these:
 

B-D Safe-Clip Insulin Syringe Needle Clipper

Model Number: BDS328235
Description: For needle disposal. Safely clips and stores up to a two-year supply of insulin syringe needles. Simple clipping action snips off and retains needles within clipper. Meets government regulations on proper method of in-home insulin syringe disposal. Compact and portable. Locks closed for travel and storage.
Manufacturer: Becton Dickinson Consumer Division




#23800 From: WEBcfm@...
Date: Sun Dec 30, 2007 11:29 pm
Subject: Re: Insurance refusal for Isentress
WEBcfm@...
Send Email Send Email
 
HI..
I was getting Isentress at the doctors office, and then went on a drug break.  She put me back on it, and I don't think that my Medicare D covers it either.  I fortunately have the supplemental ADAP program.  They have picked up copays for alot of drugs, but in this case, I think that they're paying for the whole thing.  CVS called my doctor and told her that she had to get in touch with Connecticut AIDS Drug Assistance program and speak with them about me being on the Isentress.  Can you get on ADAP in your state?  It's probably already on their formulary.  I hope this helps.  I know how much all of these drugs cost.  I think that ones over a thousand dollars a bottle.  I just got a Fuzeon kit, and the whopping price of $2,647 shocked the hell outta' me.
Best of luck...maybe the drug company has a program to help you by lowering the cost of the medication or giving it to you for a few months until it's covered by your carrier.  I guess your Doc has to plead your case with them.
take care,
Charlie


-----Original Message-----
From: fredsdadus2001 <fredsdadus2001@...>
To: PozHealth@yahoogroups.com
Sent: Sun, 30 Dec 2007 3:32 pm
Subject: [PozHealth] Insurance refusal for Isentress

Just before Christmas my doc exchanged my Videx for Isentress. My
insurer, Tufts, has refused to cover the perscription. What recourse do
I have to counter this rejection? The nurse in my doctor's practice was
contacting Tufts but because of the holidays I haven't gotten a
response yet. Has anyone else in the group had a rejection for
Isentress? I've never had a problem with Tufts before.
Thanks in advance for your help.
Craig G.


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#23799 From: "John R." <johnrsf94114@...>
Date: Sun Dec 30, 2007 11:24 pm
Subject: Re: Insurance refusal for Isentress
johnrsf94114
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When you receive the formal written rejection of coverage, you should also receive information about how to go about appealing the decision. If you haven't received such a formal communication yet, you can call the insurer's claims line for information about appealing denial of coverage. Please note, however, that your insurer may contract pharmacy management to a third party, and you want to make sure the appeal goes to the right party, so if you call the claims line, be sure to specify that you are appealing the insurer's refusal to cover an HIV medication.  You may also want to contact your state department of insurance to ask them what other avenues are available to you to protest the decision. The state insurance department my have its own complaint system. Chances are, there is someone in your doctor's office and/or at your pharmacy who deals with appeals of drug coverage denials, so be sure to talk to them before proceeding. It is best if your doctor's office handles the appeal, since the insurer will usually only listen to the doctor's determination of necessity

----- Original Message ----
From: fredsdadus2001 <fredsdadus2001@...>
To: PozHealth@yahoogroups.com
Sent: Sunday, December 30, 2007 12:32:16 PM
Subject: [PozHealth] Insurance refusal for Isentress

Just before Christmas my doc exchanged my Videx for Isentress. My
insurer, Tufts, has refused to cover the perscription. What recourse do
I have to counter this rejection? The nurse in my doctor's practice was
contacting Tufts but because of the holidays I haven't gotten a
response yet. Has anyone else in the group had a rejection for
Isentress? I've never had a problem with Tufts before.
Thanks in advance for your help.
Craig G.



#23798 From: Travis32824 <travis32824@...>
Date: Sun Dec 30, 2007 11:24 pm
Subject: Re: Insurance refusal for Isentress
travis32824
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On my Medicare Part D plan, Isentress wasn't on the formulary for 2008, because it just got FDA approval. However, I asked my Plan to make an exception to cover Isentress, and they are going too. The doc had to fill out a form stating medical necessity, etc. But, to cover all bases, I called Isentress Patient Assistance Program, and got approved for that, so they'd give it to me for free (its based on income levels). So now, I'll have 2 bottles, one free, and one is $5.50.
I have a feeling that your insurance simply did not have it on their formulary, and you may have to ask for forms for them to make the exception until it does go onto the formulary. Be forewarned, this process takes a few weeks.
If you desperately need it now, I'd contact your local AIDS Service Organization. Ryan White funds is supposed to cover meds as "a last resort".
I bet you get the approval.
Travis

fredsdadus2001 <fredsdadus2001@...> wrote:
Just before Christmas my doc exchanged my Videx for Isentress. My
insurer, Tufts, has refused to cover the perscription. What recourse do
I have to counter this rejection? The nurse in my doctor's practice was
contacting Tufts but because of the holidays I haven't gotten a
response yet. Has anyone else in the group had a rejection for
Isentress? I've never had a problem with Tufts before.
Thanks in advance for your help.
Craig G.



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#23797 From: "Jason Thomas" <malebeyo@...>
Date: Sun Dec 30, 2007 11:17 pm
Subject: Are you healthy using natural therapies instead of HAART?
malebeyo
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I am newly diagnosed and want to use natural therapies to keep my
immune system healthy. I am wondering how many years others have done
this for before having to start HAART so I may get an idea of what is
possible? Could one actually do this for a decade or more without HAART?
Thank You.
JT.

#23796 From: Jaybe <jaybe52000@...>
Date: Sun Dec 30, 2007 8:51 pm
Subject: Re:scared about Fuzeon injections
jaybe52000
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Hi Charlie,

I'm kind of in the same boat as you as far as drug
resistance goes since I've been poz for 13 going on 14
years in March of 2008.

I was in a clinical trial for another drug and my labs
started to change not for the better so my doc took me
out of the study and told me that I'd need to start
the Fuzeon since my viral load was now about 750,000
and my CD-4 was around 200. Since Maraviroc and
Raltaglavir were not yet available it was my only
option at the time.

The first time you see the entire Fuzeon kit I agree
with you, it IS scary.
I did learn to mix the drug up properly and that part
wasn't a problem at all once you got the hang of it.
Even more scary is the price tag, I second that too.
When I first saw that the Fuzeon was almost
$3000/month I was shocked.

I was started on Fuzeon in April 2007 and I just
stopped the Fuzeon injections at Thankgiving.  I'm
getting ahead of myself here, sorry.

I was also taking Prezista, Truvada, Norvir etc.
Sounds like the same regimen you have.

Since Raltaglavir was now approved and available I
told my Dr. that I had to stop the Fuzeon just because
of the "whole routine" that Fuzeon entails was really
too much for me and my partner to handle and he's an
RN!

Well of course the first time he injects me, I was so
suprised at the pain from the needle stick, I moved my
other arm accidentally and caused him to stick himself
with the needle after he'd injected me!!!!  Talk about
bad luck.
My partner is HIV neg by the way.  So now on top of
all this Fuzeon stuff for me to deal with, our doc had
to put him on the exact drug regimen I was on (Fuzeon,
Truvada, Prezista, Norvir) as a prophylaxis for a
month against him getting my mutated HIV.
So the first month he had to not only inject me but
also himself twice a day.  The good news is that he's
not seroconverted so far and it's been 8 months.  He's
just had his last HIV test to confirm that he didn't
get infected from the needle stick.

Not to freak you out even more but there is a lot to
keep track of when you are on Fuzeon.  First off, I'm
totally a baby when it comes to getting shots and the
thought of giving it to myself was paralyzing and I
literally couldn't do it.  Thankfully my partner
agreed to give me the injections before he went to
work in the morning and when he got home at night.

While that solved my problem of injecting myself, it
created more for him to deal with since I would have
to have him spread this lidocaine cream on the area he
was going to inject so I wouldn't feel the needle.

Many people just stick the needle in, they tell you
"it's not that long", it doesn't hurt that much,
"diabetics do it all the time," etc., for me it was
hell.
After a month or so of enduring the needle sticks I
kept complaining to my doc and he finally said that he
could prescribe some Lidocaine and Prilocaine Cream,
2.5%/2.5% (I think it's also called EMLA cream as a
brand name)

Of course I'm thinking to myself "why the hell didn't
you tell me about this stuff at the beginning since
you know what a baby I am regarding injections???"

The deal with the cream is that you have to put it on
at least two hours before the injection.  Not real
easy if you're out, at work, etc.
Since my partner had to leave for work at 6 AM. he'd
wake me up at 4 AM to put the lidocaine cream on me
and either put a loose dressing over it or I'd just
try to lay a certain way in bed for the next two hours
which didn't always work so well when I'd fall asleep
and roll over wiping off all the lidocaine cream.

The cream doesn't always insure a pain free injection,
it seemed to depend more on what area of the body the
injection was being given in.

However, most of the time the cream was very effective
and you didn't even feel the needle go in at all.
That was the key for my being able to endure the
Fuzeon treatments for as long as I did.  A good
general rule is to put the cream on the area you plan
to inject at least 2 hours even 2 and 1/2 hours before
the time you plan to inject the Fuzeon, that worked
well for me.

My doc told me that I just had to put the cream on 15
minutes before the injection.  WRONG!  It really takes
at least an hour and a half to two hours to really
numb the skin to the point where you don't even know
you've been stuck.  The other thing to keep in mind is
that while the lidocaine cream will stop the pain of
the needle stick, you will still feel the drug "burn"
as it's absorbed into the skin, but believe me, it was
1000 times better having only that pain to deal with
twice a day.

After all I've said above, one of the biggest problem
with the fuzeon injections are the injection site
reactions.  The literature that comes with the Fuzeon
kit shows you three areas to inject, the top of the
legs, behind the arms and the sides of the trunk.

I personally had very bad results with leg injections
since I've also got lipoatrophy causing there to be
very little fat in my legs so any time we injected the
Fuzeon into the top of my leg, I would have a pretty
good sized "lump" under the skin that would be very
hot, sensitive and painful for several days and
sometimes formed bumps that would last weeks before
finally going away.

It literally hurt to put jeans on over these lumps in
my legs from the Fuzeon injections.
Because I was lucky to have my partner administer the
injections, we decided to just stop injecting in my
legs since it was so painful and he could inject me in
other places like around the sides of my back, which
is impossible to do if you are injecting yourself.
Frankly, I don't know how they can tell you in the
Fuzeon instructions that you can self administer the
injection to the back of your own arms.  I think you'd
have to be a contortionist (sp?) in a circus to pull
that off.

We found that i had the best luck with the injections
on my upper arms where the Fuzeon instructions suggest
as well as other parts of the upper arms being careful
to not inject the Fuzeon into your muscle.

I think that they also downplay the "injection site
reactions" from the reality I had.  After injecting
this stuff in constantly different locations, you
start to have these "injection bumps" everywhere.  At
first they can be very sore and painful, somtimes they
don't hurt at all.  I think that the angle of the
needle at the time of injection is a factor as well.

The other thing that does help these "injection bumps"
finally resolve a bit quicker is taking warm/hot baths
if you can.  Showering often helps as well, especially
since you need to keep very clean while on the Fuzeon
since you are constantly breaking your skin with the
needles and the cleaner and more bacteria free your
skin is in general is important.
If you have a bathtub in your house, you really should
get into the habit of taking baths regularly.  When
the injection bumps are painful, soaking in the
bathtub can really help bring you some relief from the
pain as well as helping to reduce the size, redness
and itching that accompanies these injection site
reactions.

If you don't have anyone else that can help you with
the injections you might consider having a VNA nurse
come by and give you some of the injections on the
sides of your back, (below the shoulder worked for me
since there's a lipo pad there),  where you wouldn't
be able to reach in order to give some of the other
injection sites you can reach yourself and will be
using more often, a bit of a break if you need to.

I know this is all not what you'd want to hear and I'm
sorry if this comes across so negative.

The really good news for me regarding Fuzeon is that
it literally squashed my viral load from 750,000 to
undetectable in about 6 months.  So the whole ordeal
was worth it I guess in the long run.
Since I started the Raltaglavir my viral load is still
undetectable and my CD-4 is up to about 290 which is
also very good news.

My doc thinks that since my viral load has been down
this new regimen with the Raltaglavir should work for
awhile.

I also have had some of the side effects you
mentioned, I'm assuming from the Raltaglavir, like an
increase in neuropathy in my feet and hands which like
you I've not had happen since "the old days" of the D
drugs etc.  I've been on the Raltaglavir for a little
over a month now.

I've been reading here on this site that others on
Raltaglavir are having neuro and lipo problems too.
I've noticed an increase in fatty deposits under my
arms, the sides of my face, as well as the "usual"
places like my belly and behind my neck.

I hope some of this helps.

John in MA



      
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#23795 From: "fredsdadus2001" <fredsdadus2001@...>
Date: Sun Dec 30, 2007 8:32 pm
Subject: Insurance refusal for Isentress
fredsdadus2001
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Just before Christmas my doc exchanged my Videx for Isentress. My
insurer, Tufts, has refused to cover the perscription. What recourse do
I have to counter this rejection? The nurse in my doctor's practice was
contacting Tufts but because of the holidays I haven't gotten a
response yet. Has anyone else in the group had a rejection for
Isentress? I've never had a problem with Tufts before.
Thanks in advance for your help.
Craig G.

#23794 From: Joe Palmer <glajoe2@...>
Date: Sun Dec 30, 2007 4:16 pm
Subject: Re: scared about Fuzeon injections
jpalmer567
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Hello, Charlie,
Not quite two and a half years ago I was in a similar siutation to the one you have found yourself to be in. To make a long story short, it was apparent that any of the limited and viable drug regimens available to me would include Fuzeon. The impending treatment change was my motivation for joining this list and the Fuzeon group. I read over lots of posts in the archives and made myself stop when it felt to me that I might be conditioning myself to expect the worst regarding side effects, etc.
 
I started Fuzeon and other new drugs on 12/2/05 and can tell you that while I have a "love/ hate" relationship with Fuzeon, I know it's worked wonders for me.
 
My first tip with Fuzeon injections is this:
 
Ask, beg, demand that your doctor write you a scrip for 30 (or 31) gauge SHORT needle SUPER THIN syringes either in 1 CC or 3 CC and use this syringe for injection instead of those god awful syringes that come in the kit !!  I use Walgreens generic brand.
 
Since you are new to Fuzeon injections and perhaps self injecting period (I'm diabetic so it's less of an issue), you will probably have an easier time pushing the plunger down the barrel of the syringe if you are using a 3 CC syringe. Yes, it is a big syringe, but PLEASE do not let its size make you anxious. Pushing the plunger down on a 1 CC syringe can be a little more awkward and problematic - as some people here may tell you.
 
I used the kit supplied injection syringes for a short while until someone else here strongly recommended diabetic syringes as described above. The kit syringes caused a lot more pain and the injection site reactions were much worse.
 
Arrange with your doctor or nurses to have them show you how to inject and have them watch you the first time!
 
Other things...

Never mix more than two vials at a time and always mix them so they will be used within 24 hours. Keep the mixed vials in your fridge.
 
Figure out how and when to incorporate these new routines of mixing the vials and injections into your life so you're least affected in a bad way. I have a little diabetic kit bag that holds a small freezer block and vials on one side, and syringes, alcohol pads, etc on the other side. I'll use this to carry my Fuzeon and insulin if I want to go out at night or have an appointment in the morning. I also have two of these handy little things to clip the needles
http://www.bddiabetes.com/us/main.aspx?cat=2&id=416. The cost was around $2.50 the last time I bought one at a pharmacy.
 
Call the Fuzeon help line NOW and ask for any help or make arrangements for a nurse to come and help train you. My experience is if you try to speak with a nurse through Roche/Trimeris for help and tips AFTER you've been taking Fuzeon then they are less than helpful (meaning the reps won't transfer you to speak with one).On the other hand, I had two situations with the vials of Fuzeon or sterile water and the Roche rep was very accomodating. (Unless you tell the rep that their syringes are torture devices.)
 
If for any reason you continue to use the supplied injection syringes, PLEASE remember to twist the needle part (BEFORE removing the protective cap!!) so that it is snuggly secured on the barrel of the syringe.
 
Rotate your injection sites, too. This will help minimize the ISRs (injection site reactions). I tried injections in my thighs but the ISRs were terrible and now only inject insulin in my thights.
 
Try not to be anxious about taking Fuzeon. Yes, it is a big change, but don't let this become bigger than it needs or should be. Try to find something that will help you relax while you take at least one of the injections. For a number of reasons I decided to inject at 9 am and 9 pm. Aside from being more awake at 9 am than say 7, it's also the the time when a local TV station airs the ELLEN show, and I found her humor and nature to help distract me enough when I first started taking Fuzeon.
 
I use the the kit supplied 3 CC syringe for mixing the sterile water with Fuzeon. Since I refuse to use the 1 CC syringe, I found that my local Public Health Department will take them for its harm reduction/ needle exchange program. While I'm against inhection drug use, I would rather donate clean syringes and hopefully help someone else avoid HIV infection. If it doesn't go against your personal beliefs and isn't illegal in your area, then you may want to consider this, too.
 
Another note in closing....I had lots of mental issues about Fuzeon because of being "treatment experienced." It felt to me like I had slipped into a different category, that I was somehow less in many ways. If by any chance you feel this way, then simply acknowledge those feelings, and do what you need to do to get past those feelings. You are no less a person, or less deserving of love, life, laughter, and respect than before Fuzeon came into your life.
 
Joe

WEBcfm@... wrote:
>Hi Group,
I have been hiv poz for many years and gone through most of the available meds, and now I'm very drug resistant.  I was just on a new regimen of Truvada, Presista, Raltaglavir, and Norvir, and developed crippling numbing neuropathy, like I had in the old days of DDI, DDC? all those D drugs plus "kitchen sink therapy".  I had the doc pull me off my meds, to get a viral load back and test me again to see what I can take now.  It's been 11 weeks off meds. I was presented with the only two options I had left at this time..... a regimen that would give me neuropathy and severe diarrhea, or a regimen consisting of Truvada, Raltaglivir, and Fuzeon.  I just picked up the drugs yesterday.  The fuzeon kit is huge and scary.  I've never given myself an injection in my life and I'm kinda' terrified.  I was also shocked at the cost of the Fuzeon...the other drugs were really expensive, but the Fuzeon was almost $2,700 for a months supply.
Does anyone have any tips on the Fuzeon injections?  Your experiences will help me.  I would appreciate any feed back.
thanks in advance!
Charlie in Ct.<

#23793 From: John Barrow <pozbod@...>
Date: Sun Dec 30, 2007 3:42 pm
Subject: Re:Re : HRA and ASCUS diagnosis
johnftl59
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 Dr. Copernicus ( spelling??) called and 
said my diagnosis was ASCUS.. which is aytpical squamos cells of undetermined 
significance .. This is my 2nd yearly HRa with this diagnosis.. The doc says 
that after 3 years with a ASCUS diagnosis the risk is very very low and even 
now 95% of people will not go on to high grade.. MY question is what do I do 
now? nothing? go to another specialist

It sounds to me like you are getting excellent guidance and care.  When I read a pap smear as "ASCUS," it means that there are clearly changes from baseline, but there are not the pretty well defined kind of changes that might suggest some dysplastic process.

Remember that inflammation from any other insigificant infections can produce some changes in the squamous cells, too.

JB

#23792 From: John Barrow <pozbod@...>
Date: Sun Dec 30, 2007 3:38 pm
Subject: Re:Interesting Hypothesis To Control HIV/AIDS Nutritionally
johnftl59
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We are not being told to take these "interesting" supplements because in the era of HAART, you are wasting your money.

JB

#23791 From: "frank_brnnn" <frankcbrennan@...>
Date: Sun Dec 30, 2007 2:41 am
Subject: cocaine causes hiv to progress
frank_brnnn
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COCAINE AND INTENSITY OF H.I.V. ARE RELATED IN A STUDY OF MICE
By Denise Grady
New York Times 15 Feb. 2002

Research in mice may help explain something that doctors have
noticed in people who are infected with H.I.V.: cocaine use seems to
make the disease progress faster and lead to more of the
opportunistic infections that are the hallmark of AIDS.
The reason is not known. Drug abusers often eat poorly, have
unprotected sex and neglect their health in other ways, so it has
been impossible to tell whether their problems are due to cocaine
itself or to the other habits that often go with addiction.
A new study suggests that cocaine is to blame. In the study, by
researchers at the AIDS Institute at the University of California at
Los Angeles, specially bred mice were inoculated with human cells
and with H.I.V., the virus that causes AIDS, and then given
injections of either cocaine or a salt-water placebo. Cocaine
greatly enhanced replication of the virus and increased the number
of human cells it infected and killed.
Dr. Gayle C. Baldwin, who directed the study, said, "We're talking
about a 200-fold increase in viral load in these animals. That is a
lot."
In addition, Dr. Baldwin said, the mice given cocaine had only one-
ninth as many CD4 cells as the mice given salt water. CD4 cells,
also called helper T cells, help to activate other cells of the
immune system. They are the prime targets of the AIDS virus, and
when they are wiped out, the ability to fight off infections is lost.
The virus also infects other cells, and, Dr. Baldwin said, "We're
seeing that the population of cells that are not killed off are
churning out incredible amounts of virus."
Why that occurs is not known, she said, adding, "We're working on
that right now."
Dr. Baldwin said that cocaine had powerful effects on both the
nervous system and the immune system, and that it caused the body to
produce steroid hormones and other substances that might affect
H.I.V. and its ability to invade cells.
A report on the study will be published in the March issue of The
Journal of Infectious Diseases and is being posted today on the
Internet at www.journals.uchicago.edu/JID/journal.
Dr. Warner C. Greene, director of the Gladstone Institute of
Virology and Immunology at the University of California at San
Francisco, who was not involved in the study, said doctors had
wondered why cocaine users had a worse course with H.I.V.
"The beauty of this study," Dr. Greene said, "is that it really
focuses in and reveals some specific effect of cocaine. One clearly
sees that cocaine is doing something to the infection process."
Dr. Greene also said he thought the study would enhance both
doctors' and patients' awareness of cocaine's potential to
accelerate the course of H.I.V. infection.
"I think it has very significant implications for people infected
with H.I.V.," he said.
Dr. Baldwin said that even though the study was done in mice, she
thought the findings would apply to people.
"There's always controversy with animal models," she said. "But
among people who do H.I.V. research, this is an accepted model. You
can't address these questions in a human population. It would be
unethical. This model offers us something nothing else really can."
Dr. Greene said, "It's a model, but, boy, the effects they saw were
significant."
The mice in the study were inoculated with human cells because mouse
cells do not become infected with H.I.V. The mice in the study
lacked immune systems, and so would not reject human cells. The mice
could then be injected with H.I.V.

#23790 From: "westlahere" <josephdenney@...>
Date: Sat Dec 29, 2007 10:47 pm
Subject: Re:Please answer this....
westlahere
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I believe I was the original poster back in 2005, and it turned out
that I had indeed injected directly into a blood vessel (either the
nurse forgot to tell me about drawing back the plunger first to make
sure the needle wasn't sitting in a vein, or I missed that information
  among what seemed like a flood of instructions).  When I called the
clinic, the nurse asked the pharmacist on duty what would happen if
you injected directly into a vein.  His response was "Well, you
wouldn't feel too good."  (So much for the learned medical response.)
  I can still remember the almost-instantaneous stinging sensation in
the middle of my tongue -- I still have no idea why injecting directly
into a vein caused that side effect, but it was quite real, as was the
vague nausea as well as a distinctly greenish tinge to my face (the
latter only lasted for a few minutes).  I was later told by my doctor
that if you draw back blood into the syringe, it means you're sitting
smack in a blood vessel and you are supposed to pull the needle out
and choose a new injection site.  BTW, the queasiness had never
occurred when injecting myself previously, and hasn't happened since,
so I'm going with the pharmacist's comment (see above).

--- In PozHealth@yahoogroups.com, John Barrow <pozbod@...> wrote:
>
> "Any feedback on this would be greatly appreciated as I've
> also been worried when I draw blood back into the syringe and wonder
> after I've done so and inject anyway if I am going to die and if I hit
> a vein or what all this means? Here is the post from 2005...
>
> "This morning I was injecting myself with my weekly dose of
> testosterone cypionate (by prescription), and when I pulled the
> needle out, saw three or four large drops of blood from the
> injection site. At the same time I noticed a sharp stinging
> sensation in the middle of my tongue (yes, my tongue!), and felt a
> little queasy. The queasiness is still hanging on, a couple of
> hours later. I figured I must have hit a vein, but the only thing I
> can find online is "Don't inject into a vein, it may cause injury or
> death"! No word as to any symptoms to watch out for, etc., and no
> mention of any stinging sensation in the middle of the tongue. Has
> anyone run into this same situation? I can't believe my doctor
> would tell me it was okay to inject myself if I could accidentally
> kill myself in the process, but I am a little concerned about
> potential side effects of injecting directly into a vein. I'm going
> to place a call to my doctor, but since it's a clinic, I'm not sure
> how fast I'll get a response, so wanted to run this by group members
> as well."
>
> Proper technique should always be observed when injecting.  If you are
> not comfortable doing this, I would ask your doctor's office for more
> guidance.
>
> A slight pull-back of the needle is a good way to assure that you are
> not injecting a vein.  Seeing a drop or two of blood at the injection
> site is not abnormal, and does not mean you are in a dangerous blood
> vessel.   I have no idea why the original poster had an issue with his
> tongue.  I think they queasiness was due to reactions to the thought
> of injecting himself.
>
> JB
>

#23789 From: WEBcfm@...
Date: Sat Dec 29, 2007 9:02 pm
Subject: scared about Fuzeon injections
WEBcfm@...
Send Email Send Email
 
Hi Group,
I have been hiv poz for many years and gone through most of the available meds, and now I'm very drug resistant.  I was just on a new regimen of Truvada, Presista, Raltaglavir, and Norvir, and developed crippling numbing neuropathy, like I had in the old days of DDI, DDC? all those D drugs plus "kitchen sink therapy".  I had the doc pull me off my meds, to get a viral load back and test me again to see what I can take now.  It's been 11 weeks off meds. I was presented with the only two options I had left at this time..... a regimen that would give me neuropathy and severe diarrhea, or a regimen consisting of Truvada, Raltaglivir, and Fuzeon.  I just picked up the drugs yesterday.  The fuzeon kit is huge and scary.  I've never given myself an injection in my life and I'm kinda' terrified.  I was also shocked at the cost of the Fuzeon...the other drugs were really expensive, but the Fuzeon was almost $2,700 for a months supply.
Does anyone have any tips on the Fuzeon injections?  Your experiences will help me.  I would appreciate any feed back.
thanks in advance!
Charlie in Ct.

More new features than ever. Check out the new AOL Mail!

#23788 From: <kscott@...>
Date: Sat Dec 29, 2007 8:09 pm
Subject: RE: Re:im scared
kallenscott2003
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Just a couple thoughts to add…. Sit for a while and come to terms with it all before you run off telling everyone about it.  Maybe find some other folks with HIV, or other folks who have dealt with this, to talk to.  This is about you, and you don’t HAVE to tell anyone about having HIV.  You can tell them later, as you figure it out more, if you need to.

 

As far as for how it changes things, well, you’re going to have to devote more time to your own health than you would otherwise: regarding your doctors, appointments, nutritional needs, monitoring your health… Aw shucks, but your health simply takes a greater share of your time, now.  IF you do, as John says below, you have every probability of leading a pretty normal life…. Except for one thing.

 

In the U.S. at least, and I think it probable in the UK also, people add stigma and a lot of weird thoughts to HIV.  For one thing, people pile expectations on those with HIV they would never apply to themselves, without even knowing they are doing it.  In many ways ‘it’s just a virus, you are certainly not any worse a person for co-existing with it, and you are NOT that virus.  But yep, THIS virus is different, because other people make it so, and you’ll have to carefully come to grips with that inside your head, in your own way.  Come to grips with how the world looks at you.  I think it’s odd, but very telling, that people don’t say “I am cancer”, they say I ‘have cancer,’ but they DO say “I am HIV+”.  When you spend more time with your own health, a CRITICAL part of that will be minding your own psychological health, and fighting against all the odd notions people pile on you just because THIS virus took up residence in your body. 

 

 

 

Kelly Scott

Seattle

 

From: PozHealth@yahoogroups.com [mailto:PozHealth@yahoogroups.com] On Behalf Of John Barrow
Sent: Saturday, December 29, 2007 5:52 AM
To: PozHealth@yahoogroups.com
Subject: [PozHealth] Re:im scared

 

"i was diagnosed with hiv last month with a cd4 count of 469,i havent told any of mt immediate family and friends,it kills me inside when i think of the virus replicating inside of me,i have started imagining death,sores all over my body. i have had shingles and they healed after taking acyclovir but as they healed i have a black scar that i think is permanent.
how long does it take for the cd4 count to drop badly cause at the moment i havent started taking the treatment, are there any possibilities that im perhaps going to lose my hair? i eat healthy but i alos have a problem my stomach makes growling sounds as though im hungry, even if i eat alot it still makes noise.
lastly i have a blister like on my vagina,it pains me so much,im meant to go see my clinical specialist for a full screen pap smear do you think that will help?? "

 

It's really common to have the severe stress that you have.  Finding out you have HIV is scary, but the reality is just so different than it was in the "bad old days."

 

Looking at your address, I believe you are in the UK.   There,  you should have good access to care, and the scenarios you're describing are halloween like fantasies, but just not the reality of life with HIV.

 

The progression of  HIV is variable, but at a CD4 count of 469, most doctors would not recommend medications at this time.   Shingles usually heal without scaring.   You will not lose your hair.  You're going to have a normal life, assuming you take charge of the situation, inform yourself, and when it becomes necessary, take your meds.

 

You need to have your sore looked at, it's most likely nothing.  With all the stress you're feeling now, it would be remarkable if you didn't have some stomach problems, but talk about this, and everything, with your GB.

 

Life with HIV is what you make it.  It takes a while to learn that the sky is not falling, and that life offers all of the promise that it had before.  

 

It's all really not so bad.  You'll be fine.

 

JB

 

 

 


#23787 From: "egenagain" <egenegis@...>
Date: Sat Dec 29, 2007 7:19 pm
Subject: Re: Re : HRA and ASCUS diagnosis
egenagain
Offline Offline
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From what I have read a year ago, the doctor is on the ball.  With
ASCUS you just watch carefully and wait.  If it turns to worse, say
you get a high grade squamus lesion, then treatment would be
necessary.  The doc in NY was testing every 6 months but since
cervical/anal cancer is very slow moving, one year is probably also
fine.

--- In PozHealth@yahoogroups.com, hoppefaith@... wrote:
>
> Had my 2nd HRA at owen's clinic. . Dr. Copernicus ( spelling??)
called and
> said my diagnosis was ASCUS.. which is aytpical squamos cells  of
undetermined
> significance .. This is my 2nd yearly HRa with this diagnosis..
The doc says
> that after 3 years with a ASCUS diagnosis the risk is very very
low  and even
> now 95% of people will not go on to high grade.. MY question is
what do  I do
> now? nothing? go to another specialist? I called back Owens Clinic
and told
> them to tell Doctor  Copernicus to send the specimen to  another
pathologist
> for a second opinion.  I haven't gotten his  response to this
request as it was
> just 30 minutes ago.. He just wants  to do another HRA in 1 year..
Should I
> be nervous? I know the doc isn't   alarmed because last year he
didn't even
> tell me I had a ASCUS diagnosis.or he  might have said no real
problem.. just
> watchful waiting... Any ideas??   thanks.. luke
>
>
>
> **************************************See AOL's top rated recipes
> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)
>

#23786 From: John Barrow <pozbod@...>
Date: Sat Dec 29, 2007 3:16 pm
Subject: Detox your wallet
johnftl59
Offline Offline
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Scientist dismisses detox diets
Adopting a detox diet - often popular in January - is a waste of time and money, a leading scientist has said.

Dr Andrew Wadge, of the Food Standards Agency (FSA), said regimes purporting to cleanse the body were "nonsense".

The detox market - which can include diets, tablets and drinks said to flush out toxins - is thought to be worth tens of millions of pounds.

In his blog, Dr Wadge said water and exercise were enough to help the body rid itself of harmful chemicals.

The chief scientist of the government's food watchdog wrote: "There's a lot of nonsense talked about 'detoxing' and most people seem to forget that we are born with a built-in detox mechanism.


"It's called the liver. So my advice would be to ditch the detox diets and supplements and buy yourself something nice with the money you've saved."

Detox-based diets, which are sometimes endorsed by celebrities, can include the use of tablets, socks, body wraps, diets, eating nettle root extract or drinking herbal infusions or "oxygenated" water in a bid to make natural procedures more effective.

Some products claim to enhance the immune system, relieve pain, flush out toxins and stimulate circulation.

But, urging people to save time and money, Dr Wadge advised: "First, drink a glass or two of water (tap is fine, cheaper and more sustainable than bottled); second, get a little exercise - maybe a walk in the park - and third, enjoy some nice home-cooked food."

Fresh air

The gut prevents bacteria and many toxins from entering the body, he said, while the liver contributes to breaking down harmful chemicals which are then excreted by the kidneys.

Last year scientists from the Sense About Science organisation said detox was a waste of time, arguing that water, fresh air and sleep is all that is needed.

But, following those comments, high street chemist Boots, which has sold detox products, maintained that they have a role to play when combined with a healthy diet and exercise.







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