Monthly Archives - November 2008

Happy Thanksgiving to All

To all of you in pozhealth:

I would like to take this opportunity to thank all of you who help each other daily on this list. It amazes me that we have been sharing since 2002 with more than 30,000 emails in 7 years. We now have close to 3000 members!

I am also thankful that new drugs for multidrug resistance were approved this year and that 3 million people are now in treatment around the world, although 7 more million need it to survive. Hopefully we will see treatment spreading faster to help those who need it most and cannot afford them.

The cure of HIV is now part of the research conversation for the first time. I see the word “cure” more frequently now, although it may take years to get there.

Side effects seem to be decreasing with better drugs, and for that I am very thankful.

I am also thankful that Obama won and that hope is slowly being restored in our hearts. I hope that he does not let us down and that we can support him fully while hoping that evil does not attempt to destroy him in his mission.

I am thankful for all the sweet emails I have received from many of you through my hard times this year. Although most of us have not met face-to-face, the love I feel through the electronic lines can certainly reach my heart.

Yes, there is a lot to do and a lot we should have done to save lives in the world. But today, I am thankful that we are here helping each other while we remember our friends and family who are no longer in our presence, but they are in our hearts.

Regards,

Nelson Vergel
powerusa.org

Do we know enough about lipodystrophy?

Do we know enough about lipodystrophy?
Aug 26, 2008
Dear Nelson,

I have a quick question that I feel you can best answer for being an hiv survivor for 25 years. Is the the war on lipo able to be won??? I mean will working out bring muscle back or will my time be wasted??? Also what supplements do you suggest a person take??? I am taking the mv k-pax single strength. Thank You

Response from Nelson

I would asnwer: “yes, partially”

We now know that a lot that we did not know a few years ago.

1- D4T and AZT are two drugs that are linked to fat loss under the skin (lipoatrophy). Tenofovir (Viread) does not cause lipoatrophy in most patients (only 11% had a loss of 20% or more of fat under the skin when used they used tenofovir/3TC with Kaletra or Sustiva in one study)

2- That some protease inhibitors can negatively affect the job of insulin to help store glucose in muscle as glycogen ( insulin resistance) which may increase triglycerides and fat cell size in some patients

3- We know that exercise helps to build lean body mass

4- we know that anabolic steroids like nandrolone and oxandrolone can help those having a difficut at regaining normal weight

5- Statins and fibrates work at reducing lipids in poz people but sometimes not good enough to have them reach normal levels

6- That supplements like Omega 3 fish oils and niacin can help statins and fibrates improve their job at lowering LDL, triglycerides and increasing good cholesterol (HDL)

7- That those who start HAART with low CD4 cells tend to be more prone to having increased belly fat when their CD4 cells increase

8- That there are products like Sculptra, Silikon 1000 and Radiesse in the United States that can help people restore a healthy face

9- That supplements like K PAX and others have some promising but limited data in HIV that requires more studies

10- That growth hormone (Serostim) works at reducing visceral fat but we cannot use it for lipodystrophy because the FDA did not like growth hormone’s side effects. Another less effective but lower side effect product may be approved in the future

11- That switching first line patients from Kaletra to Reyataz does not improve their bodies. Other “switch” studies showed the same results.

Unfortunately, we do not data on lower glycemic index diets, good comparison data of what happens to visceral fat when different protease inhibitors or non-nucleosides are used with Truvada in naives with low and higher CD4 at baseline, diet/exercise combinations, and other supplements like carnitine and others. Stay tuned for my upcoming review of studies to be presented at the Lipodystrophy Conference in London on Nov 2008.

You can read more about where we are now here:

http://www.thebody.com/content/art45454.html

I hope this helped

And yes, single strength K PAX is great as a supplement since it includes all minerals and antioxidants you need.

Nelson

How Can I Lower Cholesterol Without Drugs?

Lower cholesterol without drugs
Jun 6, 2008
My cholesterol levels have crept above 200 after three years on Reyataz & Epzicom. I’m in good condition with my aerobic exercise routine, take supplements that should help my cholesterol (like omega-3s and green tea extracts), and have a small glass of red wine most evenings with dinner. I avoid fried and overly-processed foods for the most part. How much can I reasonably expect my eating and exercise habits to be effective in lowering my cholesterol? Is there anything you recommend I add to my supplements to help (e.g. l-carnitine)?

Response from Mr. Vergel

It seems that you are doing everyting you can to lower cholesterol but I have a few suggestions:

Just make sure that you are taking at least 3000-4000 mg a day of Omega 3 capsules, that you sweat while doing cardio for at least 20 min a day, that your sweet consumptions is low, that you are eating oatmeal daily , and that you do not exceed two glasses of wine a day. L-Carnitine at 2000 mg a day can also help bring triglycerides and cholesterol down, specially taken with Omega 3 fatty acids. Niacin has also been shown to be effective decreasing cholesterol. In some studies, niacin at daily doses of 2-3 grams can lower LDL and total cholesterol by approximately 20-30%, lower triglycerides by 35-55%, and increase HDL cholesterol by 20-35%. It can cause “flushing” of the skin in some patients for 20-30 minutes that may make it uncomfortable for them to take it. Slow adjustment of the dosage, administration with food, and giving a baby aspirin before niacin may minimize these reactions. Niacin is available as an over-the-counter supplement and also as a prescription drug called Niaspan.

Some people do all they can to lower cholesterol naturally but are yet to get down to recommended levels. There are genetic factors involved in many cases. For those, taking lipid lowering meds is a good idea.

Keep up with the great work!

Nelson

How do I get my insurance to pay for my facial wasting treatment?

How do I get my insurance to pay for my facial wasting treatment?
Jun 28, 2008
Hello Nelson-

I hope this finds you well. I wanted to check in with you to see if you were aware if there is any insurance coverage for silicone treatments for facial wasting. I have had several sessions, and it works great. It is not cheap, of course. I am in need of a refresher treatment. I should mention that my insurance is Medicare A,B and D. I receive my meds through a Blue Cross-Part D plan, backed up by ADAP.

Neal

Response from Mr. Vergel

Neal,

It is difficult to get reimbursement for Silikon 1000 since it is an off-label use for facial wasting, but you have nothing to lose and a lot to gain if you have your doctor write a medical necessity letter to send to your insurance company.

Here is a letter that Dr. Doug Mest wrote for my web site facialwasting.org for Sculptra. You can have your doctor use this letter as a template and also to use these scientific references. You can also visit the wonderful resource guide that TheBody.com has created for trying to get coverage for facial lipoatrophy reconstruction options from your insurance:

http://www.thebody.com/lipo/insurance.html

References for silicone and facial lipoatrophy:

http://findarticles.com/p/articles/mi_m0PDG/is_2_4/ai_n13559216

SAMPLE LETTER:

Insurance Co Name

Insurance Co Address

Patient Name

Subscriber #

Date

To Whom It May Concern:

This letter is written in regards to the medical necessity of restorative treatment for the facial deformities this patient suffers from secondary to HIV-Associated Lipoatrophy. Facial fat loss is the most devastating aspect of this condition as it can not be disguised by clothing or other means. Although the exact underlying mechanism of HIV-Associated Lipoatrophy is unknown (1), the devastating effects of this condition are known (2,3). Patients suffering from this condition are at an increased risk of depression, socially withdrawn and potentially suicidal. Furthermore, patients have even stopped their life saving HAART therapy without consultation with their physician in an attempt to stop this side effect. The implications for viral mutations, increasing viral load and worsening of patients underlying condition requiring more expensive treatments cannot be stressed enough. Treatment of HIV-Associated Lipoatrophy with Sculptra (Poly-L-Lactic Acid) has been shown to improve anxiety and depression scores (4) as well as improve patient’s quality of life as measured by visual analogue scale (5). The use of Sculptra is clearly indicated as a reconstructive procedure; that is, repair of abnormal facial structure caused by HIV or its treatment, in order to create a normal appearance.

The safety and efficacy of Sculptra in restoring the normal facial contours of patients suffering from HIV-Associated Facial Lipoatrophy has been evaluated by the US FDA (6). Based on the available scientific evidence (4,5), the FDA granted approval of Sculptra as a restorative medical device for the specific indication of HIV-Associated Facial Lipoatrophy in August 2004.

For your information. the ICD9 diagnosis code for lipodystrophy is 272.6. HIV-related lipodystrophy syndrome consists of lipo-hypertrophy (fat accumulation in the visceral area and dorsocervical pad) and lipoatrophy (subcutaneous fat loss in the face, extremities and buttocks).

Due to the medical necessity of this treatment and the availability of a safe and effective treatment option, pre-approval is hereby requested for treatment of this patient’s HIV-Associated Facial Lipoatrophy with Sculptra.

As this approval is relatively recent, I would be happy to further educate your company on this issue in any way that you might deem helpful. Please feel free to contact me at the above office with any questions you may have.

Sincerely,

References:

1) Montessori, V. CMAJ. 2004;170:229-238.

2) James J, Carruthers, A. Dermatol Surg. 2002;28:979-986.

3) Martinez, E. Drug Saf. 2001;24:157-166.

4) Moyle, GJ. HIV Medicine. 2004;5:82-87.

5) Valantin, M. AIDS. 2003;17:2471-2477.

6) FDA Scientific Advisory Panel 3/25/2004 Washington DC

Are Creatine Supplements Effective to increase muscle?

Creatine Supplement
Jul 29, 2008
I workout six times a week, take a teaspoon of creatine before each workout with some juice. Is there a problem taking this supplement pratically everyday. I noticed that on my recent labs that my creatine number was 1.4H, I’ve been taking this supplement for about 6 weeks.

Response from Nelson

Creatine is the most popular bodybuilding supplement out there. It has been shown in non HIV studies to increase lean body mass and strength. I have taken it once in a while and definitely feel more pumped and a little stronger. There are concerns about loading up the kidneys, however. Your creatinine blood level is higher than normal, so I would probably be careful if I was you.

We have some pilot data in HIV presented by Dr. Sakkas at the Lipodystrophy Workshop in Dublin in 2005. It was a placebo controlled study of the use of creatine or placebo plus exercise.

Strength did not differ much between the creatine arm and the placebo arm. But men taking creatine had a significant jump in triglycerides, a risk factor for heart disease. I am not sure if the creatine supplement used had sugar in it, which may explain the increase in triglycerides.

Lean body mass index rose in both groups, but significantly more with creatine (2.3 versus 0.9 kg, P = 0.01). Thigh muscle cross-sectional area also increased more with creatine, but not significantly more than with placebo (12.2 versus 9.3 cm2, P = 0.34).

What are your triglycerides? Talk to your doctor since you may have some reduction in kidney function that may not make you a good candidate for this supplement.

You may want to try Juven, another supplement that has arginine, HMB and glutamine that may not have a negative effect on the kidneys.

Reference:

G.K. Sakkas, K. Mulligan, MI. DeSilva, et al. Creatine supplementation fails to augment the benefits derived from resistance exercise training in patients with HIV infection. 7th International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV. November 13-16, 2005. Dublin. Abstract 6.

Provigil for Fatigue?

Provigil…what is your opinion?
Aug 4, 2008
I suffer from severe fatigue and my doctor wants me to try Provigil. What is your opinion? Thanks guru man

Response from Nelson

PROVIGIL is a prescription medicine used to improve wakefulness in adults who experience excessive sleepiness (ES) due to one of the following diagnosed sleep disorders: obstructive sleep apnea (OSA), shift work sleep disorder (SWSD), or narcolepsy.

It is used in HIV off label to treat fatigue. A pilot study done by Dr Judith G. Rabkin in NYC showed good results in increasing energy levels and mood in people with HIV. There is a larger study now recruiting :

http://clinicaltrials.gov/ct2/show/NCT00118378?intr=%22Modafinil%22&rank=32

I have taken Provigil for three years on and off and absolutely love it. I take a very small dose of 100 mg at morning time when I am too fatigued to work. I have mild sleep apnea and did not enjoy using a CPAP machine. I experience mood elevation also.

Two bad thing: it is expensive and many insurance companies do not wan to pay for it, and it is metabolized in the P450liver enzimatic path, so there may be interactions with HIV medications that use the same path. So far we have no interaction data since many pharmaceutical companies do not include this drug in their “normal” list of drugs to test.

Insurance companies that do not wan to pay for the drug argue that cheaper amphetamine-based products do the same thing. What they ignore is that Provigil is not an amphetamine and it has no habit forming properties. It is not classified as a Class II drug as amphetamines are. It also does not decrease appetite. The company has a patient assistance program (I have not audited it, however). You can have your questions about reimbursement answered by calling the PROVIGIL Reimbursement Assistance Hotline at 1-800-675-8415.

Some people are very sensitive to it and experience nervousness with it. I say if that happens try half a pill and build up from there.

Of course, Provigil is not a substitue for a good night sleep.

I hope this helps!

Nelson

What is better? Testosterone Injections or Gels?

What is better? Testosterone Injections or Gels?
Nov 6, 2008
I am currently on testosterone enanthate, one injection every two weeks. Is there an actual advantage to using testim, the gel? I have all options available to me. Ed

Response:

Dear Ed:

If you are used to the injections, you may not feel the same “lift” by the gels. The injections cost around $80 a month compared to $1100 a month for Testim or Androgel. Some people argue that gels are better to keep your testosterone blood levels more constant and to avoid “peaks and valleys”

Some people love the daily gels. I am an injection guy since I do not want to deal with daily application.

Some people cannot reach adequate testosterone blood levels (0ver 500 nanograms per deciliter of total testosterone) while using Testim or Androgel since these two only contain 1% testosterone. It is unfortunate that most people and their doctors do not know that you can get better and more concentrated (5%) testosterone gels from compounding pharmacies at around $60 a month. Some of the cheapest ones are apsmeds.com and newrx.com

More info on medibolics.com or our book Built to Survive, available at amazon.com

Nelson

Feeling bloated everyday What to eat?

Feeling bloated everyday What to eat?
Oct 28, 2008
I have an ongoing daily problem with bloatedness where I feel my stomach never empties properly ,and I never approach a meal feeling hungry.I have accumulated visceral fat as a pot belly through lipoatrophy and have been trying to eat well- high protein/calorie diet to build a bit of muscle tone on my arms and legs in particular.Can you advise me how to get some relief from the bloating,the fat accumulation around the gut, and how to maintain the weight I have?. Many thanks for any help. Regards John

Dear John:

I tell you, your problem is my main problem also.

I have researched options for ten years. Eating smaller meals that do not contain milk products or sweets seeem to help. I avoid beans and brocolli also. I take four pills of Beano before meals and that helps sometimes. Eating yogurt twice a day gives me relief also.

Try to snack instead of having three large meals. Be really aware of any food allergies you may have, particularly milk and whey protein products. Drink lots of water also.

I have also tried Ultrase, a prescription digestive enzyme taken before meals. That seems to help a lot. Glutamine at 15 grams a day seems to be helping a lot of people (I have problems with adherence with powder products that require several doses a day)

The problem comes and goes for me without reason. I really think that keeping a healthy gut flora is key, and avoiding gas producing foods. Sometimes I wonder if binders used in HIV medications have an effect on our guts. It has also been shown by certain studies that our gut integrity is impaired after years of HIV, so who knows if that is also a factor in bloating and that “full feeling” that many of us have.

I have also noticed that my bloating gets worse when I take pain killers like ibuprofen. They have been shown to decrease gut motility, so that may be a factor.

Some patients have insisted to their doctors that they want a one slice CT scan at the L4 L5 level to see how much visceral fat they have. I am not sure if this is something that insurance companies would pay for and what the use would be to have such information. It is my belief that visceral fat can push on our intestinal tissue and gives us that feeling of fullness, but this is just a speculation from my part.

Many of us are suffering from this problem. Many have gone through colonoscopies, endoscopies, etc without any clear answers. Unfortunately, I know of no researcher looking into this problem.

I would work out three to four times a week to try to decrease fat accumulation. Do not go crazy with so much protein intake that counteracts the effects of exercise. Too many calories, no matter if they come from protein, will end up stored as fat if your energy expenditure is not high enough to compensate for the extra food intake. As I said, small 300-400 calorie snacks 6 times a day, lots of water, and exercise should be your basic program to start with.

I hope this helped some. It has become one of the hottest topics in this column so stay tuned since I usually do not let go of a problem until answers are found somehow 🙂

Nelson

Vitamin Research in HIV- anything exciting now?

Vitamin Research in HIV- anything exciting now?
Nov 12, 2008

I have been reading your emails about supplements and HIV and you seem to be concerned that the research has slowed down. My question is: what is being studied right now, if any?

Thanks

Tony

Dear Tony

I am glad you asked this question. I have done a search on clinical trials.gov and have actually found some really interesting studies that are currently enrolling:

Micronutrient Supplemented Probiotic Yogurt for HIV/AIDS and Other Immunodeficiencies

http://clinicaltrials.gov/ct2/show/NCT00517803?term=HIV&recr=Open&rank=441

Effects of Mixed Exercise Regime and L-Carnitine Supplementation in HIV Patients

http://clinicaltrials.gov/ct2/show/NCT00572429?term=HIV&recr=Open&rank=54

Chromium Picolinate to treat HIV related diabetes

http://clinicaltrials.gov/ct2/show/NCT00109746? term=HIV&recr=Open&rank=340

A Trial of Vitamins and HAART in HIV Disease Progression

http://clinicaltrials.gov/ct2/show/NCT00383669?term=HIV&recr=Open&rank=124

The Prevalence of Vitamin D Deficiency and Effects of Vitamin D Supplementation

http://clinicaltrials.gov/ct2/show/NCT00306410?term=HIV&recr=Open&rank=410

Acupuncture for Nausea in HIV

http://clinicaltrials.gov/ct2/show/NCT00624793?term=HIV&recr=Open&rank=390

So, I guess I was not 100% correct when I said there is little research on nutritional and complementary therapies in HIV

I encourage everyone to call these sites and support these studies

Nelson Vergel

Can Gardasil actually remove mild warts?

Question:Can Gardasil actually remove mild warts or is it only for preventing
infection in the first place? I was also wondering if a woman can take
Gardasil and the infection can be eliminated.>>

Answer:
Gardasil is a preventive vaccine, not a therapeutic vaccine, so it can’t eliminate the infection once you have it. But since people can be coinfected with multiple types of HPV (some cause warts, some cause cancer) it can prevent you from acquiring additional HPV types you don’t already have. Gardasil is a quadrivalent vaccine–meaning it prevents infection from 4 types of HPV–two causing warts, and two that cause the majority of cancers. Since most people with HIV are by definition sexually active, they’ve already been exposed to HPV–how many types depends on the extent of sexual activity, and how old you are. So in theory it could prevent you from being infected by the HPV types you don’t already have, but it’s hard to know what kinds you have since I don’t think those tests are commercially available (they’re only done as part of research)

Sorry I couldn’t give you a simpler answer. So whether you should take the vaccine becomes a personal choice–mostly determined by whether you’re willing to spend the money (I think it’s about $300? Don’t quote me on that) and it’s a series of shots, not a one time deal.

The far more important thing to do is to get a regular PAP smear of your rectum (and cervix, if you have one) If the results come back abnormal (as they often do–esp in HIV positives) it’s imperative that you follow it up with an anoscopy (or colposcopy for the cervix) and a biopsy of any suspicious areas. If the results come back grade 2 or higher they must be removed (don’t let anyone convince you otherwise–HIV+ people are at much higher risk of rapid progression to cancer) Women know all about HPV and the cervix, and for the past 40 yrs PAP smears and followup testing have drastically lowered the cancer incidence & deaths. You need to be proactive and make sure you and your doctor do the same for your butt. For a list of certified anal PAP smear practitioners, go to http://www.analcancerinfo.ucsf.edu/

Hope this helps.

Jeff in Palm Springs