Showing posts with label Nelson Vergel. Show all posts
Showing posts with label Nelson Vergel. Show all posts

Tuesday, December 18, 2012

Nelson, how did you manage to survive HIV ?


hello nelson, I have a curiosity about building body after HIV infection.I am guessing that I should have infected in august 1st by sexual intercourse although I used a condom.I am 38 year old and I want to live 30 more years being healthy and strong economically.Being a long term survivor you have some clue.Did you build your body after HIV infection? How long it took ? Can you share tips to live long ?
Response from Mr. Vergel
People who start HIV treatment early usually do not have unintentional weight loss due to the infection, and may have less weight gain after starting antiretrovirals. So, that is my first suggestion: start treatment early even if yourCD4 cells are above 500 cells/ml.
The key is to find a regimen that agrees with you. Some people are lucky to tolerate their first regimen (usually Atripla), but others develop side effects that lead them and their physicians to switch them to other regimens (like Complera, Isentress+ Truvada, Stribld or boosted Reyatazplus Truvada). Your physician will guide you through that process. But, as I said, most people do well on their first try.
I am a long term survivor that had to combat wasting and lipodystrophy syndromes through my HIV infection, so I have been able to learn a lot about therapies to gain lean body mass and lose visceral fat. Luckily for most, these two syndromes are not as common with newer HIV regimens. This is an old article describing my path back in the days of struggle:Nelson's story
When it comes to nutrition and exercise, I have written two articles that I consider basic reading for all who want to stay in shape while living with HIV:
Outsmarting HIV with Healthy Eating
Exercise: The Best Therapy
I also suggest that people who are newly infected watch this short video that tells them all the steps to follow: Video
I hope this helps you with a starting program that you can follow. Please let me know if you have any more questions by writing it here:
Ask a question
In health,
Nelson

Wednesday, November 30, 2011

HIV Expert Offers Tips for Better Health



Nelson Vergel is the picture of health. Looking at him, you would never know that he’s been HIV positive for more than 25 years.  His chemical engineering degree and love of science led him to become a leading treatment advocate for people with HIV.
Vergel recently held a free seminar at the Pride Center at Equality Park where he discussed advances in HIV medications and treatments.
The first thing you notice about the Venezuela native is how buff he is.  Once he starts talking about living with HIV, you see that he’s on a mission to help people feel as good as he looks.  Vergel is hopeful about the treatment breakthroughs.
“I believe that some sort of combination approach will be used to cure us in 10-15 years.  We already have a case of one cured HIV patient (The Berlin patient).  But his cure was extreme and very risky.  So researchers are looking for ways to cure people in a simpler way,” he said.
Vergel is the author of Testosterone: A Man's Guide and co-author of the book Built to Survive; the founder of the nonprofit organizations Body Positive Wellness Clinic and Program for Wellness Restoration; the Nutrition and Exercise forum expert at TheBody.com.  He is also an international speaker on HIV treatments and side effect management. Those seminars are frank and informative.
Testosterone: A Man’s Guide discusses the symptoms, proper diagnosis, and treatment options, along with practical “how-to” information created by an advocate and patient for 20 years regarding testosterone therapy. Besides researching data on different options, Vergel has tried most of the products discussed in the book and provides practical tips on each one.
1- Do not be shy about telling your doctor if you have symptoms of low testosterone: low sex drive, fatigue, lack of focus/motivation.  If you have those symptoms, ask your doctor to get your blood levels of total and free testosterone measured.
2- There are over 5 options to treat testosterone deficiency.  Educate yourself about them (pros and cons) since no single option is best. Talk to your doctor about each.
3- If you start testosterone replacement therapy, you need to remind your doctor to retest your testosterone after the first month to see if you need to readjust the dosage to attain healthy testosterone blood levels of 500-1000 nanograms per deciliter.
Speaking of doctors, Vergel says many HIV patients in South Florida have an advantage – in terms of their physicians.
“Progressive doctors, in my opinion, do not only treat the virus, but also educate themselves about side effect management and complementary therapies. Fort Lauderdale and Miami have several of those doctors. Several cities do not,” he says.
Many people don’t have regular access to doctors or credible medical information.  Vergel is here to help.  At www.the body.com, he answers questions along with other experts – making it the largest HIV information site. It has weekly newsletters by subscription. Vergel’s nonprofit site (Program for Wellness Restoration) iswww.powerusa.org.  His online discussion group can be found at http://health.groups.yahoo.com/group/PozHealth/.
Denise Royal is an award-winning journalist. She’s a self-described “news junkie” she loves to write about current events and emerging trends. She’s also President of the multimedia content management firm Royal Treatment Media.

Tuesday, August 23, 2011

Taking care of ourselves on the road to the cure



Thursday, August 25
7:00pm-9:00pm
What is the latest info on healthy aging with HIV? On treatments to improve the quality of my life? Will I see the cure in my lifetime? Join Positive Force and three great speakers for answers to these questions - and more!

Speakers:
Nelson Vergel, HIV wellness advocate, expert, and author
Dr. James Romano, with a presentation on "Surgical Correction of HIV-related Features"
Special Guest Speaker: Timothy Ray Brown, the "Berlin Patient," his story and inspiration on our road to the cure

Topics:
- Strengthening your bones
- Protecting your cells against toxicity
- Preventing anal cancer
-  Facial fillers
- Treat visceral fat
- Hormonal concerns
- Cognitive concerns
Food and beverages will be served, so please RSVP. For more info or to RSVP: contact Justin.
Location: Rainbow Room, LGBT Center, 1800 Market Street (map)
Positive Force is a program by and for HIV positive gay, bi and transgender men. We build community for the thousands of men in SF living with HIV. HIV has many faces. Guys come to us from diverse backgrounds, looking for accurate information and to join in on fun events. Our programs offer the chance to mix it up with other poz guys and our allies too. To learn more about all we do, visit Positive Force's home page.

Wednesday, February 02, 2011

Interview with author Nelson Vergel about his new book


Full Nelson

[ 0 ]February 1, 2011 | Steven Foster
NelsonVergel slider Full Nelson featured
Back by popular demand: author Nelson Vergel wrote Testosterone: A Man’s Guide in part to respond to men’s queries about their diminishing sex drives.
Speaker, survivor, and author Nelson Vergel gives OutSmart the no-longer-skinny on ‘Testosterone: A Man’s Guide,’ his first book in over a decade
by Steven Foster
Steven Foster: It’s been 11 years since your first book Built to Survive hit the shelves and became an almost de facto manual for living with HIV. Why this book for your follow-up?Nelson Vergel: After my first book, I began to get a lot of e-mails from men—healthy men, not just men with HIV—who wanted to know if they needed to have HIV to get some help with hormone therapy. And that really struck me that we needed to begin providing this information.
The book is incredibly comprehensive.
It is time to package all of this information. But the information in here is practical—it’s not a textbook. This book basically has all the facts on how to manage side effects and maximize benefits, choose the right options, know if testosterone is for you. Not everyone should be using testosterone.

What made these men write?
The first thing people notice is not being very interested in sex. But it goes beyond that. You’re not connecting, you’re kind of lackadaisical about life. You’re not really depressed, but you’re in a funk. You don’t go out like you used to, you don’t enjoy hobbies like you used to. There’s no zest for life. The mood, the connection, the way you relate to others, the way you deal with stress.

But doesn’t a loss of sexual drive occur naturally with age?
As we age, testosterone goes down. Illnesses make testosterone go down. Sometimes there’s not a real reason why. I’m not saying that low testosterone is the only reason people have those symptoms. We all go through ups and downs. But if it’s a trend downward and you’re not that  old, then it’s a good thing to go to your doctor and have your testosterone checked.

It seems like there’s such a stigma about that—men and low testosterone.
The first step is to recognize you have a problem, and that’s very difficult for men. To admit they’re not at their best, that sexually they’re not interested in performing? Those subjects are moot to most men.

Do most doctors just say, “Oh, here’s some Viagra”?
Yes, a lot of doctors do that. Viagra is so easily prescribed. And people can find it online from other countries without a prescription. But it’s not the solution to the problem—it’s just a Band-Aid, using Viagra. And studies have shown that people with low testosterone respond very well to Viagra. But it doesn’t work as well or as long. And your drive and your hunger for sex is not enhanced by Viagra. With Viagra you need stimulation. You actually have to be driven to have the sex. Testosterone lights that fire. Viagra might just provide oxygen to that fire.

What has testosterone replacement therapy [TRT] done for you?
Saved my life. I’ve been HIV-positive for 27 years. In 1993 I was losing a lot of weight through the wasting syndrome before the protease inhibitors arrived. I was in Los Angeles and guys were using testosterone underground and they looked great. They had HIV like me, but they looked great. But I was all, I’m not gonna get on that, it’s gonna kill my liver and my immune system.

TRT had bad press?It still does. But I’d lost 30 pounds already and I needed to do something because back then we didn’t have any meds. If I hadn’t gone to testosterone I would not have survived to ’96 or ’97 when the protease inhibitors came in and saved some of us. But a lot of my friends didn’t make it.

What about the current view?
Testosterone is not the answer to everything. It can create problems if you don’t know what you’re doing. But it’s like anything in life. If you’re taking a medication, you need to know what you’re doing. I’m very confident that anyone who has any questions about testosterone can find the answers in this book.

Thursday, January 20, 2011

What Happens When Testosterone Replacement Fails to Improve Them?


Erectile Function and Fatigue- What Happens When Testosterone Replacement Fails to Improve Them?
By Nelson Vergel
Excerpt from “Testosterone: A Man’s Guide” (available on amazon.com )


More articles on testosterone here: http://testosteronewisdom.blogspot.com/
Most men find that their sexual desire increases after they start testosterone replacement. Sexual dreams and nighttime/morning erections may be more easily achievable, but in some cases testosterone alone does not make erections strong or lasting enough for successful intercourse.
For these men the use of prescription phosphodiesterase type 5 inhibitor (PD-5) medications likeViagra, Cialis, and Levitra—may be needed in combination with testosterone replacement.  However, some men do not respond well to these oral agents or have side effects such as headaches, nasal congestion, flushing, gut problems, and, in the case of Cialis, back pain. Cialis may last longer than the others (36 hours compared to 4 hours for Viagra or Levitra), but so may its side effects. Some men take Claritin and ibuprofen with these drugs to pre-treat nasal congestion and headaches, respectively. Cialis is also approved for daily use at 5 or 10 mg/day dose (regular dose is 20 mg/day). They are available by prescription but I have heard that some men are ordering them without a prescription from overseas websites to save money (overseas sources can be ten times cheaper than products in the United States).  This book does not endorse the use of these drugs without a prescription, but it is my duty to mention facts about what is happening out in the real world.
Note: If erectile dysfunction is not improved while on testosterone, ask your doctor about adjusting your dose of testosterone. Ensure that your total testosterone level is between 500 and 1000ng/dL.  Also, have your doctor check your blood levels of estradiol; if too much testosterone is  converted into this female hormone as it may cause sexual dysfunction (.can be treated with low dose Arimidex).  Low levels of thyroid hormone, infections, lack of sleep, alcohol, smoking, medications and depression also can cause erectile dysfunction in the presence of normal testosterone levels. Last but not least, lack of attraction for our sexual partner can get in the way of achieving a strong erection.
Other options for men who need an extra erectile boost while using testosterone replacement:
YohimbineAvailable over-the-counter or by prescription (Yocon); increases sex organ sensitivity. It can raise blood pressure and cause insomnia and anxiety, so talk to your doctor. A small study showed that men who used yohimbine with the amino acid arginine had better erections (read section on supplements in this book)
Muse (alprostadil)this is a prescription pellet that inserts into the penis to produce an erection. Not very popular.
Trimix or Quadmix—Available by prescription from compounding pharmacies. These are mixtures of prostaglandins and papaverine that increase blood flow and retention into the penis. Prostaglandins are mediators and have a variety of strong physiological effects, such as regulating the contraction and relaxation of smooth muscle tissue. Prostaglandins are not hormones and they are not produced at one discrete site, but rather in many places throughout the human body.
Trimix is a mixture of two prostaglandins (phentolamine and   alprostadil) plus papaverine (a vasodilator medication) that increase blood flow to the penis and cause strong and lasting erections, with or without sexual stimulation. These compounds appear to act together to increase arterial inflow, dilate smooth muscles, and restrict venous outflow promoting erectile rigidity with greater success and in smaller doses than if these compounds were used as single therapies.
An example of a dosage combination for tri-mix is 10 micrograms of alprostadil, 500 micrograms of phentolamine and 15 mg of papaverine. Dosing of tri-mix preparations has not been standardized.
Trimix is injected directly into the side of the penis through a fine-gauge “insulin-style” needle in very small amounts (0.1-0.33 cc) that increase blood flow to the penis.  It results in strong and lasting erections. The main potential side effect are hematomas (bruising), fibrosis if used too frequently and on the same injection site, pain, and   dangerously long-lasting erections (priaprism).  Priaprism may sound great but this can literally kill your penis by causing gangrene of the tissue after stagnant blood coagulates inside it.  I know men who had to go to an emergency rooms 8 hours after having used too much Trimix and have the blood drained from their penis.  To ensure perfect injection technique and dosing, it is imperative to be trained on how to dose this with the help of an urologist.
Compounding pharmacies sell two types of Trimix formulations: Freeze dried (powder to be mixed later with water) or pre-mixed vials.  Some men find the freeze dried form not to be as effective.
It is extremely important to remember never to use Viagra, Cialis, or Levitra before or at the same time as you use Trimix. This is a dangerous combination that can increase the risk of priaprism.  Be particularly careful with Cialis since it can stay in your blood stream for a longer time.  I know someone who had priaprism since he had forgotten he had taken Cialis two days before using Trimix.
Most men who use Trimix love it, even if they have had to learn the hard way about priaprism during one instance.  Most of these men did not respond well or had too many side effects to oral agents like Viagra or Cialis.
For instructions on how to inject Trimix, read:
For instructions for physicians on how to treat priaprism in the unfortunate case that it happens:emedicine.medscape.com/article/777603-diagnosis
A 10 cc bottle of Trimix can cost from $70 to $100 in compounding pharmacies.  If 0.15 ccs are needed per erection, this bottle can be good for 67 erections.  In comparison with Cialis and Viagra ($16 a pill), this option seems economical.
Caverject— This is an injectable form of alprostadil. Injections of alprostadil have been reported to cause pain, bleeding, hematomas and scar tissue leading to Peyronie’s Disease (excessive curvature of the penis) in some patients. Caverjet is available by prescription and it is not a compounded product, so some doctors who are not comfortable prescribing compounded products feel more at ease prescribing it. However, it is not as effective as Trimix, it requiresa large injection volume, and it comes preloaded in syringes with thick needles.  It is also 10 times more expensive than Trimix but several insurance companies pay for it (Trimix is rarely covered by insurance). This injection into the penis that produces an erection that can last 1 to 2 hours. It has a larger injection volume than Trimix and is a lot more expensive, unless your insurance pays for it. Follow instructions from your urologist since overdosing can also cause priaprism.
Penile restriction rings—These rubber or leather restricting bands (commonly known as “cock rings”) can be very effective at maintaining erections after the penis fills up with blood. Be careful not to use it too tight. Neoprene and leather rings are the most common.  They can be found online.
Other options are penile vacuum devices and penile implants. Due to the scope of this book, these two options will not be reviewed. Plenty of information can be found by Googling those terms.
I highly recommend this paper since I think it is the best I have read with a review of all studies done using different treatments for erectile dysfunction:http://www.ahrq.gov/downloads/pub/evidence/pdf/erectiledys/erecdys.pdf
Medications that could cause decreased sex drive or erectile dysfunction:
Medications can cause erectile dysfunction in some men. A great review of all studies of drugs that affect sexual function in men was provided by Dr Walter K.H. Krause in his book “Drugs Compromising Male Sexual Health”. He was able to identify evidence from different studies (many uncontrolled and small) about the common classes of prescription medications that can cause erectile dysfunction. It is not known if testosterone replacement can counteract the effects of these medication classes. Among the medications are:
  • Antidepressants: Selective serotonin reuptake inhibitors (SSRIs), tricyclic antidepressants, monoamine oxidase inhibitors
  • Blood pressure medications (antihypertensives): Alpha andregenergic antagonists, beta-blockers, diuretics, guanethidine, methyldopa
  • Narcotics and opiates
  • Barbiturates and benzodiazepines
  • Hormone related products:  Anabolic steroids, antiandrogens used in prostate cancer, estrogens, medroxyprogesterone, 5-alpha-reductase inhibitors
  • Anti-acids: Histamine 2 receptor antagonists, proton pump inhibitors
  • Cholesterol –lowering agents:  Bile acid sequestrants, fenofibrates, statins
Fatigue
If no improvements in fatigue are observed after 6 weeks of testosterone replacement, factors beyond hypogonadism may be present.
Thyroid and adrenal function should be checked to ensure that those two glands are working properly Sleep apnea can also be a factor involved in the failure to improve stamina.  Depression may still need to be addressed with the proper medications and counseling.
Thyroid Function:
The thyroid is a butterfly-shaped endocrine gland located in the lower front of the neck. It produces thyroxine or T4, which is converted to tririodothyronine, or T3.  T4 production is controlled by thyroid stimulating hormone or TSH, a hormone produced by the pituitary.  Hypothyroidism, or low thyroid hormone, can cause sexual dysfunction as well as depression, fatigue, dry skin and hair, weight gain and increased sensitivity to the cold.  Blood tests to measure TSH, T4 and T3 are readily available and widely used.
The American Thyroid Association (thyroid.org) has great comprehensive information on how to determine if you have hypothyrodism that could be causing your fatigue.
Adrenal Function:
The adrenal glands, located in the abdomen above the kidneys, regulate stress in the human body. When the body encounters an emergency situation, the adrenal glands release hormones, such as adrenaline, that enable the body to respond accordingly. You may have encountered this reaction, called the “fight or flight” response, if you have encountered danger, fear or shock. Adrenal fatigue is the controversial idea that the adrenal glands can become worn out, creating illness, if continually over stimulated. Proponents of the “adrenal fatigue” theory hold that the adrenal glands may be over worked in some individuals and therefore become “fatigued” and unable to produce sufficient hormones.    When your adrenal glands become exhausted, your natural cortisol levels drop significantly. Cortisol is your naturally occurring stress hormone. In addition to low sex drive and infertility, symptoms of adrenal fatigue may include chronic fatigue, low blood pressure and low blood sugar, dizziness, headaches, anxiety or panic attacks, depression,and other equally debilitating reactions.
Some doctors may prescribe low doses of corticoid steroids if your morning levels of cortisol (measure by blood, saliva or urine tests) are low.  But be careful with corticoid steroids since they can increase fat mass and decrease bone density if given in doses that exceed what the healthy adrenals would produce.
DHEA:
The adrenal glands also produce dihydroepiandrosterone (DHEA), the most abundant hormone found in the blood stream. The body uses DHEA as the starting material for producing the sex hormones testosterone and estrogen in men.  Studies have shown that it only increases testosterone in women. The production of DHEA diminishes in most people after age 40. In people aged 70 years, DHEA levels will be approximately 30 percent lower than what they were at age 25. Low blood levels of DHEA have been associated with many degenerative conditions.
Some controversial and non-conclusive studies have shown that people with immune deficiencies and fatigue may benefit from supplementation with this hormone. It is still available over-the-counter in the United States.  This may change soon due to a new bill passed by Congress that classifies it as a performance-enhancing steroid (no studies have shown that it has such effect).
One study showed that women with the correct levels of DHEA can convert it into testosterone as their body needs while men do not benefit to the same degree. You need a blood test to know if you have low DHEA-S since most of the DHEA converts into this sulfated form. Common doses for women are 5to 30 mg a day, while men tend to benefit from 25-100 mg per day (to bring low levels of DHEA-S to normal)
All the hormones mentioned can be tested with blood tests or by using the easy-do-it-at-home mail order saliva hormone tests that are permissible without a prescription. Mail-order saliva tests for testosterone, DHEA-S, estradiol, and cortisol are offered by Great Smokies Laboratory at 1-800-522-4762.
NOTE: Do not use DHEA supplements unless your blood levels of DHEA-S are low.  If low, start at a low dose and get your DHEA-S tested again after a month.  Men who use DHEA supplements may have problems with higher estrogen levels since this hormone can also metabolize into estradiol. This could result in gynecomastia and water retention.  If you start taking DHEA, have your blood levels checked to make sure they are not above normal. There are many claims about DHEA being an anti-aging and an anti-cancer cure, but none of these claims has been substantiated with strong data.
Sleep Apnea:
Sleep apnea is a sleep disorder in which the patient briefly stops breathing or breathes shallowly many times during sleep and therefore does not get enough restful sleep; oxygen levels drop in the blood, starving the brain of oxygen.  In addition to causing daytime fatigue, it can increase blood pressure and cardiovascular risks. Testosterone-replacement therapy has been associated with exacerbation of sleep apnea or with the development of sleep apnea, generally in men who use higher doses of testosterone or who have other identifiable risk factors for sleep apnea (high body weight, thick necks, snoring, alcohol consumption, and others). Upper-airway narrowing does not seem to be caused by testosterone replacement therapy, suggesting that testosterone replacement contributes to sleep-disordered breathing by central mechanisms rather than by means of anatomical changes in the airway.
If your spouse or partner complains that you snore loudly at night and you  suffer from fatigue,  tell your doctor.  The only real way to find out if you have sleep apnea is to have your doctor refer you to a sleep lab for a sleep study.  If you are diagnosed with sleep apnea, a Continuous Pressure Airway Pressure (CPAP) machine can be prescribed to help you open up your airways with a small air pump while you sleep.  Some people love it while some hate wearing a mask  while being hooked up to a machine at night.  I have seen men regain their quality of life after starting CPAP.  It is paid by insurance, Medicare and most HMOs.
Stimulants:
Some physicians prescribe drugs like Nuvigil, Ritalin or Adderall when everything else fails.
Armodafinil (brand name Nuvigil) is used to treat excessive sleepiness caused by narcolepsy (a condition of excessive daytime sleepiness) or shift work sleep disorder (sleepiness during scheduled waking hours and difficulty falling asleep or staying asleep during scheduled sleeping hours in people who work at night or on rotating shifts). Armodafinil is also used along with breathing devices or other treatments to prevent excessive sleepiness caused by obstructive sleep apnea/hypopnea syndrome. Armodafinil is in a class of medications called wakefulness-promoting agents. It works by changing the amounts of certain natural substances in the area of the brain that controls sleep and wakefulness. Some insurance companies do not want to pay for it.  It is not an amphetamine and it does not require a special prescription since it not a class III DEA regulated drug.  Many doctors have samples so that you can try it before you commit to using it.  You can get a free 14 day supply with a doctor’s prescription by filling out the information in this web site:http://www.nuvigil.com/pat/wakefulness_resources/voucher_form.php?gclid=CJKHs5L8xqYCFcXD7QodKnubFw
Ritalin and Adderall (both come in cheaper generics) are also being prescribed to people with severe fatigue that does not respond to usual means.
Methylphenidate (brand name Ritalin) is used as part of a treatment program to control symptoms of attention deficit hyperactivity disorder (ADHD) in adults and children. Methylphenidate (Ritalin, Ritalin SR, Methylin, Methylin ER) is also used to treat narcolepsy.  Methylphenidate is in a class of medications called central nervous system (CNS) stimulants. It works by changing the amounts of certain natural substances in the brain
Adderall is a brand-name psychostimulant medication composed of racemic amphetamine aspartate monohydrate, racemic amphetamine sulfate, dextroamphetamine saccharide and dextroamphetamine sulfate, which is thought to work by increasing the amount of dopamine and norepinephrine in the brain. Adderall is widely reported to increase alertness, libido, concentration and overall cognitiveperformance while decreasing user fatigue. It is available in two formulations: IR (Instant Release) and XR (eXtended Release). The immediate release formulation is indicated for use in Attention Deficit Hyperactivity Disorder (ADHD) and narcolepsy, while the XR formulation is approved for use only with ADHD. In the United States, Adderall is a Schedule II drug under the Controlled Substance Act due to having significant abuse and addiction potential. It requires a triplicate prescription in many states.
If you and your doctor decide that stimulants are a reasonable option, you will need to review the many potential drug interactions, physical health and mental health complications that can occur.
Over-the-Counter Supplement: SAMe
SAMe (SAM-e, S-adenosyl-methionine, or S-adenosyl-L-methionine) is a naturally occurring compound that is found in every cell in the body  It is produced within the body from the essential sulfur-containing amino acid methionine. Protein-rich foods are sources of this amino acid.
SAMe is generally considered safe when taken in appropriate doses.  People with bipolar (manic/depressive) disorder should be aware that it could trigger a manic phase. People taking standard antidepressants, including MAO inhibitors, SSRIs, and tricyclics should not take SAMe except on a physician’s advice. It is fairly well tolerated but be it can cause jitteriness or gut problems in some. Taking SAMe with meals can reduce these adverse effects.
I am convinced this supplement works for depression and fatigue. I have taken 400 mg twice a day for a few months and can definitely feel a difference.  I actually get reminded when I do not take it by my having decreased energy. An added bonus is that it can also decrease liver enzymes.
SAMe is not cheap. There are many different manufacturers but I use the Jarrow Formulas brand, as I trust their quality control.  It comes in foil-protected 200 mg-capsules since it tends to lose its effectiveness when exposed to air.
Here is a summary of studies that show that it works as well as commonly prescribed antidepressants, and also some data on liver function and arthritis pain:
I am also including a study done at ACRIA that also found benefits in treating depression in those living with HIV:
Talk to your doctor before taking this supplement.  Do not stop taking your antidepressants to switch to SAMe since it has not been fully studied in large controlled studies.
PERSONAL COMMENTS:  Because of terrible bouts with fatigue in the past, I was referred to a sleep lab and diagnosed with mild sleep apnea. I tried CPAP with different masks (they are smaller ones with “nose pillows” and many other designs, so don’t give up early without trying different styles). I could not get used to it. I have had my thyroid and adrenal functions checked without finding any problems.  I have tried Nuvigil, Adderall, and SAMe with good results for my fatigue.  Unfortunately I get anxious if I use them for long periods, so I only use them as needed.  What has made the most difference, besides keeping my testosterone in the upper side of the normal range, is going to bed around the same time at night and waking up also at the same time.  Traveling and other factors can interfere with maintaining a normal sleep cycle, but the fact is I need to listen to my body’s needs.  I can usually be tired enough to get better sleep by the time bedtime arrives if I avoid caffeine after 3 pm and don’t exercise too late at night.
Testosterone: A Man's Guide by Nelson Vergel

Saturday, November 20, 2010

Thursday, October 07, 2010

At the End of Your Rope?


October / November 2010


At the End of Your Rope?

by Tim Murphy

Ironically, the success of today’s antiretroviral treatments has hindered the development of new options for longtime survivors with drug-resistant HIV.

Chad Kenney, 56, was always aggressive when it came to his HIV treatment. Shortly after his 1987 diagnosis, the Denver native started a treatment newsletter, Resolute, that quickly became a survival guide for people living with HIV/AIDS in Colorado. He was always game to try to raise his CD4 levels with the latest drug (they’ve never been above the 400s), whether it was Retrovir, the first HIV med; Compound Q, a failed hope; or the very first protease inhibitor. He remembers attending a lecture in the late ’80s given by the late legendary treatment activist Martin Delaney. “[Delaney] asked, ‘If you had a diagnosis of cancer, would you wait and see if it got worse [before] you started 
to treat it?’” remembers Kenney. “So I decided that I was going to try whatever agent I could find [to fight my HIV].”




But what neither Kenney nor HIV experts knew at the time was that adding just one new drug to a failing HIV regimen is usually not enough to quash viral replication. And, doing so often leads to the rapid development of HIV resistance to one new drug after another.

An accumulation of drug-resistant mutations certainly hasn’t made things easy for Kenney. Despite using a power regimen consisting of Truvada, Isentress and Selzentry, his viral load stayed in the hundreds of thousands.

It was only when he added another new drug, Prezista, that his CD4 cell count rose to 145 and his viral load fell to 69—just above the “undetectable” viral load threshold.

He’s hoping these numbers will stick, if not improve. “I’ve lived with uncertainty for a long, long time,” he says, “so I try not to ride an emotional roller coaster.” But the scary truth is, if his viral load creeps back up, there’s no new HIV drug on the market he can add to his regimen.

Just five years ago, tens of thousands of HIV treatment veterans were in the same boat Kenney finds himself in today. The volume of people facing treatment failure was enough to spur drug companies to develop a new wave of antiretrovirals strong and innovative enough to keep drug-resistant HIV in check. Many of those drugs on the market today—including Aptivus, Fuzeon, Intelence, Isentress, Prezista and Selzentry—have lowered the number of people with HIV who are fully resistant to treatment. Based on most good accounts, there are just a few thousand such people nationwide.

Good news, unless you are a member of this large handful of people—which is expected to grow in size in the future—who still need new options. The number of patients who currently need resistance-busting antiretrovirals is so small that pharmaceutical drug companies have little financial incentive to invest the billions of dollars arguably necessary to develop new drugs, including entirely new classes of compounds.

“HIV drug development is about to come to a halt,” says Jay Lalezari, MD, a San Francisco HIV doc who works on creating new HIV drugs and says that of 1,000 patients in his HIV practice, only about 40 “are waiting for something better to come along.”

Nelson Vergel, a longtime HIV survivor in Houston, only recently got his viral load undetectable, thanks to TaiMed Biologics’ experimental drug ibalizumab (TMB-355). He has devoted his life to finding similarly situated patients and connecting them with the trial drugs they need to suppress their HIV.

During the past 15 years, new options continued to come along for survivors like himself. But today? “They’re in deep shit,” Vergel says. “I’m really angry.”

Why angry? For one thing, the current drugs keeping millions of people alive were tested on the very folks who currently need, or may soon need, new treatment options. “The drug industry owes them a big debt,” says Steven Deeks, MD, another San Francisco HIV doc who works on the issue of drug resistance. “We should not forget this generation of people living with HIV,” he says, adding that we need to provide them with new drugs as soon as possible.

The current pipeline, however, has only a few contenders. Two notable hopefuls: the aforementioned ibalizumab, which blocks a key protein on CD4 cells so HIV can’t bind to it, is gearing up for Phase III studies; and GlaxoSmithKline’s S/GSK-572, which is currently in Phase II studies and shows some promise for folks who’ve developed resistance to Merck’s first-generation integrase inhibitor Isentress.

In recent months, two other experimental HIV drugs—Avexa’s apricitabine and Myriad Genetics’ bevirimat—were shelved. Both were casualties of weak early test results and lack of a profit motive.

In a unique activist-doctor partnership, Vergel, Deeks and Lalezari are working with the developers of TMB-355 and S/GSK-572, as well as with the U.S. Food and Drug Administration, on a program to enable patients who really need new options to go on both drugs simultaneously, before the FDA approves them, to beef up the chance of success. They hope this program will launch by mid-2011.

Kenney, who takes a fistful of meds three times a day, says he’ll only sign up for the new drug program if his current regimen doesn’t hold out, but he’s hoping it does. Meanwhile, life goes on. And though he and others like him may dream of “undetectable,” their lab numbers don’t necessarily reflect how they feel day to day.

Many patients with no options left remain in good health, living functional lives despite low CD4 counts and high viral loads. The trick, it seems, is to stay on the best HIV regimen possible rather than going off HIV meds completely. (See “Safety Nets” on page 18.) Lalezari mentions a patient who’s had one CD4 cell for the past five years. “Somehow the lethality of the virus has been weakened by all the drugs he’s on,” he says, adding that lab CD4 counts are a weak marker of immune health because they detect only CD4s circulating in blood, not in lymph tissues and other compartments.

Kenney hopes to visit his boyfriend this winter in Thailand. For now, he hits the gym daily and eats healthy. And there’s love in his life in Denver. “My brother lives two blocks away, and I have friends that go back more than 20 years,” he says. And at day’s end? “My 7-year-old Lab retriever, Kasandra, sleeps on my bed. She’s very, very affectionate—and incredibly demanding!” Sounds a bit like her owner.

Safety Nets
Detectable virus doesn’t mean doom! Here’s how to survive and thrive at the end of your treatment rope while waiting for new options.

DETECTABLE? KEEP TAKING YOUR MEDS!
Research shows that people with multidrug-resistant virus and detectable viral loads do better when they stay on their “failing” HIV meds rather than going off them. Talk to your doctor about finding the best regimen possible. And it’s OK to ask for a second opinion. The indefatigable Nelson Vergel can put you in touch with an expert in your area.

SUPPRESS YOUR HERPES
If you have genital herpes (HSV-2), stick to your anti-herpes meds like acyclovir or talk to your provider about taking it. Research shows these meds also help reduce HIV viral load.

USE CONDOMS
It’s important to use condoms to avoid contracting sexually transmitted infections, because getting STIs can inflame your immune system and make your HIV viral load go up. You’ll also want to protect your partners from drug-resistant HIV.

LIVE WELL
Eat right, exercise, take quality vitamins and reduce stress with yoga, acupuncture, support groups, a pet—whatever works for you. “Keep a positive outlook,” Vergel says. He should know—he’s had detectable virus most of his 27 years with HIV, and he’s still going strong!

PLUG IN TO FUTURE RESEARCH
Connect with Vergel at salvagetherapies.org or e-mail him directly at nelsonvergel@yahoo.com. He’s your link to the latest resources for folks seeking new options.

Search aidsmeds.com and clinicaltrials.gov for the latest updates on experimental drugs ibalizumab, S/GSK-572 and other agents making their way into clinical trials. 


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