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Author Topic: Nucleomaxx -- No Benefit  (Read 11224 times)

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Offline bobino

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  • Posts: 264
Nucleomaxx -- No Benefit
« on: June 30, 2006, 12:35:33 AM »
I posted on this topic in the old forum.  I wanted to update my post there concerning my experience with Nucleomaxx.

Over the past year, I've started to experience lipodystrophy although I am not on any antiretroviral medication and never have been.  My VL was undetectable at my last test, and my CD4 count was 570.  So the numbers are good, but I've got lipo.

Having read about Nucleomaxx and the trials involving uridine, I decided to order some and give it a try.  I purchased what the manufacturer calls a two-month supply.  According to the manufacturer, you are supposed to ingest three sachets (packets) of this stuff three times a day for three days straight and then wait a month and do it again.  So that's what I did. 

I completed my second course of the stuff over a week ago.  At this point, I have seen no benefit.  My facial wasting is moving right along, as is the fat loss in my buttocks, arms, and legs. 

What I can conclude from this is that Nucleomaxx appears to have no benefit over the short term if it is taken according to the manufacturer's directions.  I understand that clinical trials involving the product all involve much more frequent doses than I have taken.  It may be that the benefits can only be realized at much higher doses.  Or it may be that one would have to take it as directed by the manufacturer over a much longer period.  I don't know.  The stiff price of the product will keep me from much further experimentation.

One thing I can say is that the claims made for this product in a post on one of the old forums are -- how shall I say this politely? -- bullshit.  I honestly didn't believe the hype about it, but since some serious researchers are looking into it, I figured it might be worth a try.  If this does turn out to be a real treatment for lipo, it will require a very different dose from that currently prescribed by the manufacturer.

So there you have it.  The results of my own brief experiment with Nucleomaxx.  My advice is that unless you've got lots of money and can afford to buy large quantities of the product, it probably isn't worth trying.  Of course, it might not work even at the higher dose.  For now, I'll wait and see what the studies show.

John
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Offline Merlin

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Re: Nucleomaxx -- No Benefit
« Reply #1 on: July 06, 2006, 08:33:48 PM »
Hey John:

I almost ordered that stuff too months ago. Like you, I'm not on medication yet. I posted my enquiries in the old forum and someone informed that this stuff is used for those on meds. So I did not order and thankfully too. Sorry you had to waste money on this.

My facial wasting has slowed recently due to massive eating and alot vitamin supplemention. I even started taking powdered collagen (marine) and I'm not sure if it helped but I did once noticed some improvement after 2 weeks of daily consumption (1 sachet daily). Actually a friend commended I looked much better one day that made me take a second look at myself. It costs about $50 for a month's supply and can be considered expensive over a long term period. I stopped after 1 box to ration. I bought 3 boxes to try. Will start again soon. Will update you if it works. However, I may need to isolate its consumption from other major vitamin supplements to determine what's working and what's not; a difficult process considering I take alot of stuff and eat alot and also noticed if I rest enough, I do look better. Well, guess it may be a combination of many factors. Wished it could be more simple but we are not dealing with a simple virus here.

Meanwhile, stay well. Peace and Blessed Be !

Michael
I'll leave Hatred to those not strong enough to Love.

                            +++

Believe & The Power Of The Mind Transforms.
Make It Happen...

                            +++

I blame them for nothing.
I forgive them for everything.

---->> Mary J. Blige on dysfuctional parents

Offline bobino

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Re: Nucleomaxx -- No Benefit
« Reply #2 on: July 07, 2006, 12:21:33 AM »
Although Nucleomaxx didn't seem to help, I don't know if it would be more beneficial for anyone on meds.  Lipodystrophy seems to be caused by mitochondrial toxicity, and this would affect both people who are on meds and people who aren't. 

As I said, my experiment was brief and limited.  My only conclusion is that it doesn't seem to help if taken at the manufacturer's suggested dose for the time period that I used it (2 months).  It may well be that at higher doses it will help.  But that conclusion will have to await the outcome of the ongoing studies involving this product.

John
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Offline newt

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Re: Nucleomaxx -- No Benefit
« Reply #3 on: July 07, 2006, 11:07:05 AM »
I expect I posted a link to this study report on the old forums, which notes a measurable, statistically significant but not particularly noticeable-to-the-eye increase in fat for people on AZT or d4T after 3 cycles of Nucleomaxx.  It's use beyond people on AZT/d4T is unevaluated.

- matt
"The object is to be a well patient, not a good patient"

Offline bobino

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  • Posts: 264
Re: Nucleomaxx -- No Benefit
« Reply #4 on: July 08, 2006, 12:45:59 AM »
Thanks for the link, Matt.  I note that the cycles of Nucleomaxx that were referred to in the article were each of 10 days duration.  In other words, patients in the study were given more than three times the amount of Nucleomaxx that the manufacturer prescribes.  (Their recommended cycle is three packets a day for three days.)  So it may be that it works effectively at that dosage.  But if one were to buy that much of the product on line, it would cost more than US$300 per month, none of which is covered by insurance.

More interesting were the other supplements and strategies discussed in the comment portion of the article.  (Who knew that drinking beer would raise uridine levels?)  Maybe I'll try one of those.

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline panda

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  • Posts: 224
Re: Nucleomaxx -- No Benefit
« Reply #5 on: July 30, 2006, 12:33:32 AM »
hi, well i know there are pepole it did helped them, i herd about one guy who used to take zerit and quit and tried it and it did helped him after 6 month, so i considering on trying it as well, i took the zerit 2 years ago, so i think it might be worth trying to fix the demage caused back then ... don't u think so ? by the way, do u have any idea if possible to take this nucleomaxx during prenancy and also what about anabolic ?

Thnks !

Offline RJ

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  • Posts: 2
Re: Nucleomaxx -- No Benefit
« Reply #6 on: September 07, 2006, 05:03:26 PM »
Ref: Dosage.  You know, Aegis.com & ProBody.com posted an mid-2005 inteview with David Nolan (don't know him).  There they discussed daily dosing of NucleomaxX at 36 grams daily.  Whether the future data is promising or not,  I'd still wonder about the duration of dosing reguired to sustain benefit (years?).  Also, I've found no mid-2006 updates about uridine, but I'm just beginning to look.

Offline ZCorker

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  • Posts: 48
Re: Nucleomaxx -- Has benefit for neural protection and not fat loss.
« Reply #7 on: September 16, 2006, 11:41:41 AM »
   The facial wasting and wasting of the upper arms area is usually caused by low Blood Serum Adiponectin, a condition that is quite treatable with Actos (Pioglitazone).  All protease lowers Blood Serum Adiponectin.

   Nucleomax is a prouridine drug that is supposed to raise Blood Serum Uridine -- not Blood Serum Adiponectin.  Triacetyluridine (a form of Uridine) has been shown to prevent neurological damage in the mouse model of Huntington's and prevent and treat Alzheimer's.  Most recently it has been shown to improve liver function caused by genetic damage in hiv patients.  Triacetyluridine was first used in this country about 20 years ago for repairing and preventing genetic damage caused by Fluoroscene, a highly toxic chemotherapy drug. 

   Uridine is considered to be a neuroprotective drug and how it ever got advertised as a drug for facial wasting is completely beyond me.  I think part of the problem is that the idiots at NIH and the scientific committee who advise NIH designed a ridiculous study to test uridine for fat loss because some of the very early data from Nucleomax trials in Europe reported that some of the patients were experiencing fat growth all over their body.  However, make no mistake -- it was the american medical community and not the European Medical community that decided they wanted to rule out Uridine doesn't produce fat.  This was a stupid study, poorly conceived and should have never received tax payer funding.

   Uridine plays a very important role in keeping hiv patients alive and preventing further neurological destruction.  But in many cases the conditions caused by insufficient uridine are a separate and distinct problem from sunken faces.  Wide scale study was completed about a year ago in both Australia and in France that demonstrated that Pioglitazone (Actos) was successfull in reversing lypoatrophy.  However, the patients in the French study gave it an adverse rating.  The French used skin thickness as a way of quantitatively measuring success.  The Australian Study proved the drug was safe and effective when given to a large number hiv patients.  Actos is approved or close to approval for treatment of peripheral artery disease in Taiwan, a condition that is separate and distinct from diabetes.

   Actos needs to be used in the hands of an expert.  It can not be given to Class 3 or 4 heart patients and does present some risk to patients who are taking it concurrently with insulin.  Based on the limited experience the medical community has since approval  (3 years), the data suggests that this drug should be taken early (blood sugar over 100 >), Triglycerides over 150, HDL <40.  But the medical community won't give it to anyone who doesn't have blood sugar that is at least 120.  New studies are now testing Actos at blood sugar >110, but those studies are Phase I and should have never been approved by the FDA.  The FDA should have adapted the data from Australia, France, and Taiwan and proceeded immediately to PHase III expanded acces.  Actos is hard on the liver.

   Your sunken face is not merely a cosmetic thing, but a life threatening condition.  Statistically you stand a better than 80% chance of turning into a full fledged diabetic unless you restore adiponectin levels in the blood stream.
In addition, people with low blood serum adiponectin are associated with significantly increased risk of sleep apnea, and cancer.  And what does the medical community offer us?  A bunch of face fillers instead.

   I am actively trying to get both Actos and something to raise HDL.  The low HDL appears to be caused from insulin resistance.  Pfizer has Torcetrapib, but they have gone out of there way to exclude all hiv patients from any of there trials.  In addition, they have added statins to the drug to make it look like it is raising HDL more than the drug is really capable of doing.  I believe that getting a generic manufacturer in Brazil is the best way to get this drug into the country.  FDA guidelines allow you to import a drug for your own personal use -- provided that the drug is not legal in the US.  Since Pfizer is seeking approval for Torcetrapib in combination with Atorvastatin, it should be possible to bring Torcetrapib into the US indefinitely as long as it doesn't have Atorvastatin in it -- even if Torcetrapib become legal and FDA approved. 

   Generally the FDA will not allow a drug to be imported if it is FDA approved in the US.  For this reason getting Torcetrapib made out of the US is literally a life and death situation for virtually all hiv patients.  Taking Niacin is not a good option for most hiv patients.  Niacin not only increases insulin resistance and raises blood sugar, but it doesn't make the body produce its own HDL.  All it does it clear LDL from the body and thereby raises HDL through this mechanism.  Your facial lypodystrophy problem is a hormonal problem.   The medical community has been more than a little beligerant when it comes to providing meaningfull treatment for this condition.  They just don't want to admit that all protease will make you diabetic.
 ;D
« Last Edit: September 16, 2006, 11:50:14 AM by ZCorker »

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Nucleomaxx -- No Benefit
« Reply #8 on: September 16, 2006, 03:18:51 PM »
If Actos treats lipoatrophy couldn't you present the research to your physician and ask him or her to prescibe it for you and monitor your liver functions?

Offline ZCorker

  • Member
  • Posts: 48
Re: Nucleomaxx -- No Benefit
« Reply #9 on: September 16, 2006, 04:55:57 PM »
   One of the reasons that physicians don't want to mess with Actos is that one of the side affects is congestive heart failure.  However, if you carefully read through all of the listed reported adverse events on Medline, you will find the vast majority of these cases were people taking insulin concurrently with Actos or a high dose of Actos.  There have been wide scale studies done in both Australia and France that demonstrated that Pioglitazone is safe and effective in treating hiv lypodystrophy.  In addition, there was a smaller earlier study done by GSK with Rosiglitazone in 1994 that demonstrated that the facila lypodystrophy could be prevented with Rosiglitazone.  The side affect profile is better with Pioglitazone and Rosiglitazone will actually reduce your HDL for the first two months and then the HDL will begin to climb.  For this reason Rosiglitazone is not as desirable a medication.

  The conversations that I have had with other Pioglitazone Investigators is that the drug is safer at the lower doses.  This means that you don't want to wait until you have full blown diabetes to begin treatment because you will increase your risk of having a serious adverse event.

  The glitazone Class of drugs is usually done under the supervision of an Endocrinologist and/or a Cardiologist with a background in preventitive Cardiology.  My own preference would be to go with a Cardiologist to help reduce the risk of adverse events.  Someone with higher blood sugar than mine would probably want to go to an Endocrinologist or both.

  Most doctors and Endocrinologist shy away from giving the drug to patients unless your blood sugar is ridiculously high.  What is quite amazing is how complacent hiv patients have been with going after the hide of the FDA and drug companies for not reformulating protease inhibitors in a manner that eliminates the depletion of Blood Serum Adiponectin.

  I don't think you will find too many doctors who will give you the drug.  Over 7 months ago I did find another clinician that was willing to consider giving it to me because my C-Reactive Protein was >5.  This is in the danger zone and I was in imminent danger of having a heart attack.  Intervention and other therapeutic agents seem to have reduced the C-Reactive Protein. Pioglitazone is clinically proven to reduce C-reactive Protein.  However, it was not initially approved for that purpose with the FDA.  There are Phase IV studies going on for treatment of peripheral artery disease with Pioglitazone.  Peripheral artery disease is caused from high C-Reactive Protein.  Common symptoms are blood pressure that is different in one extremity from another or inability to walk, etc, etc.  Left untreated you can die of a heart attack.

  There is lots of data on the causes of Hiv facial atrophy and the cause appears to be from the loss of this hormone.  Actos is powerfull medication and not to be administered by someone who is not knowledgeable.  Personally I feel more comfortable going to a Cardiologist with substantial experience with both hiv related wasting and peripheral artery disease.

  The two studies that I posted earlier are worth further exploration.  I would be curious to know if at least one of them will allow hiv patients into it.  I don't have a car and the nearest study site to me is in Wenatchee (90 miles away).  I expect to have a car in about 3 weeks and I might participate in the study if it is still open.  In the mean time, I am going to request a Fibrinagen test (spelling) and see if I can get on a low dose of Actos.

   I encourage you to complain to the FDA about the need of all drug companies to reform their protease inihibitors with respect to Blood Serum Adiponectin.  Also, you may want to look for a couple of smaller or medium sized firms to see if they have a delivery method for Blood Serum Adiponectin that won't go through the liver.

   In any event, you would be foolish to think that facial lypodystrophy is not a life threatening situation.  It is quite life threatening and the trick is finding a way to restore Blood Serum Adiponectin without burdeoning your liver.  Keep in mind that there is no standardized test for Blood Serum Adiponectin.  For the most part it is nothing more than a crap shoot between you and the physician with respect to what dose will work safely.  In some people it can take a long time for the drug to kick in. 

   During the Aidswalk, I met PWA who told me of a story that was too incredulous to believe.  His blood sugar went from completely normal to more than 500 after only one dose of Kaletra.  They ended up giving him 4-5 different anti-diabetic medications to control the situation and took him off of protease inhibitors immediately.  He can't tolerate any of them.





   

Offline bobino

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Re: Nucleomaxx -- No Benefit
« Reply #10 on: September 17, 2006, 11:55:26 PM »

I have posted on the benefit of the glitazone class of drugs for those with lipodystrophy.  Anyone interested in this topic should read the interview with Dr. Kathleen Mulligan that is posted on thebody.com.  Her interview is here:

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

Dr. Mulligan concludes from her review of the studies that, while the glitazone class of drugs may have SOME benefit for those with lipoatrophy, the benefit is modest at best.  Here's what she had to say in the interview on this:

I want to say one other thing, if I can, is that even in patients who are experiencing a benefit, say a group of subjects who are not on d4T, the increases in subcutaneous fat that have been seen thus far with the glitazones have been rather modest. There was a report at the Retrovirus meeting this year from a French study of pioglitazone, a randomized, double-blind, placebo-controlled study, where people got pioglitazone or placebo for a year, and there was a close to significant effect of pioglitazone, but overall, the increase in fat over a year was about three tenths of a kilogram, close to a pound, about three quarters of a pound.

If you think about, say, three sticks of butter spread out over four limbs in the course of a year, it's a messy thing to think about, but that's not a lot of fat increase, and it's not clear whether this is going to continue, whether it might accelerate over time, or whether it might, whether you might be able to optimize the use of this by doing it in people who've recently switched off of d4T to a less toxic drug. But the increases in fat with rosiglitazone and pioglitazone do seem to occur in some people, but overall I think they're fairly modest.



So I think that the message is that while these drugs may have some benefit for people with lipo, they're not a cure.  It looks like the gains in fat are pretty modest.  That said, I'm seeing an endocrinologist in a few days, and I intend to ask him about Actos.

John
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Offline ZCorker

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Re: Nucleomaxx -- No Benefit
« Reply #11 on: September 18, 2006, 11:52:54 AM »
  I think the data that you just reported is accurate and quite reasonable.  I think it is fair to say that it takes just as long to grow back the visceral fat as it did to loose it (4-5) years.

 :-*

 


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