Not Impressed With UCLA Clinical Trials

I don’t know if anyone is keeping up with me, but on a somewhat recent post, I talked about entering into a clinical trial from UCLA to try out a turmeric supplement.  The pill, which may have been placebo ended up making me very ill and cost me one week’s worth of work.  Now that I have had plenty of time to recover, I feel great again.  Needless to say, today I received a bill from UCLA for blood work.  I’m shocked, to say the least.  Now I have to try and figure out why this would be and deal with the stress of making sure I don’t have to pay.  Since the clinical trial was unpaid from the start, and cost me money in gas, time, and the addition of the pill making me very sick, this is just the icing on the cake.  I hate to complain, but wanted anyone out there who was considering a clinical trial at UCLA, to think twice!  I had been considering doing a yoga study for UCLA on RA but at this point, never mind.  This clinical trial was suppose to keep my anonymity, so it’s terribly shocking, really it is, that the billing department would even receive my information!  Thanks so much to everyone for your support!  ((HUGS))!-Sarah

What’s Making You Sick?

Obviously if you’ve come to my site, you probably have an autoimmune disease or know someone that does.   Your body is working against you.  So not only is your body making you sick, but perhaps your medications give you side effects or constant popping of supplements has you feeling ill.  Or could there be something else going on that you don’t realize, in addition to these things?

I want to tell you a story about a recent experience of mine.  I joined a clinical trial because I don’t have health insurance, and I was interested in getting some blood tests for free.

I was of course disappointed when I found out I wouldn’t be paid and the drive was quite far.  I would lose a little bit of work here and there, and even more importantly,sleep.  Still, I rationalized at the first visit that if I had the real deal and not the placebo, it would be worth the drive. The tests and the pill would add up to a lot of money, so why not give it a shot?

When I got the pill, I rushed to my car and even though I know you’re not suppose to break open the capsule, I did. I eagerly wanted to know…did I have the placebo or the real thing? It was a bright orangy yellow and it tasted, from what I could remember, like turmeric. I was ecstatic! I believed I had received the real thing!

I began taking the pill as described… 2 pills twice a day for one week, then 4 pills twice a day from thereafter.

My blood tests at initial visit showed that my CRP was within normal range. I still had substantial inflammation in my hands, but the doctor was surprised with my “normal” results.  My next visit however, about a month later, I was having more inflammation and my tests showed it, along with my joints. I chalked it off as being a “healing crises” and continued taking my pills, thinking they were going to soon give me great benefits.

About a month later, I went in again. This time I was doing much worse. Test results showed higher inflammation, hands were far worse and elbows and other joints, including my neck were starting to become painful and really stiff again, something I hadn’t had in years. If you don’t know what this feels like, it feels exactly as you would imagine waking up from a bad car accident would feel like.  Instead of waking up in the hospital bed, with hovering nurses and family, you’re waking up in your own bed, turning off your alarm clock and forcing yourself through the disability and pain to get through your day.  Your neck feels like whiplash, your hands and wrists won’t bend and it hurts to be touched.  Driving is dangerous and near impossible but you do it anyway.

The doctor told me I could come off the pill if I wanted…he hated seeing me suffer. He said the other guy asked if there was prednisone in the pill because he was feeling so good. But since I’ve taken lots and lots of supplements and experienced the “healing crises” first hand from many of them, I decided, “the worse the flare, the better the pill”. I explained to the doctor what had happened to me on other pills that ended up working out and that I had hoped turmeric wouldn’t do that to me, but since it is, maybe I’m not on the placebo and I’ll be reaping benefits here soon. He seemed surprised and sent me on my way. Secretly I was thinking, “wow, how can he not know about the healing crises?” And I felt FOR SURE that I MUST be on the real thing!

But then things got worse…. I missed an entire week of work. yep, seriously, I did. And I continued taking those stupid pills. I kept thinking, “i’m really going to feel great any time now.” But I didn’t. I got night sweats, aches and pains, extreme fatigue… I was at an all time low, one I hadn’t been at since the beginning of my RA, or at least not for some time. I improved my diet, took more pills of the supplements that I knew worked and felt confused why I wasn’t getting better.

Finally it occurred to me, “maybe I’m not on the real pill.” I came home one evening, made a plate of one teaspoon of real turmeric on one side, and the pill’s contents on the other. My husband and I did a look and taste test. The colors were different for sure. And the taste…. turmeric has a very distinctive taste. The powder from the pill however in comparison, I realized, tasted like flour, maybe???? but definitely not the turmeric on the other side. Nope, compared to that, it didn’t have a taste. My mind must have deceived me when I tried it before! I had been so hopeful!  I just stupidly thought that they wouldn’t go to so much trouble and make a powder that looks and tastes like turmeric. Well they did, I was wrong, although the taste in comparison, ISN’T the same, now that I realize.

Unfortunately, I have not been able to find out all the ingredients that were in the placebo pill.  But for sure, I had been taking yellow #5 and yellow#6, as well as potato starch.  I am assuming the main ingredient was probably flour.

The day after I stopped taking the pills I started to feel better.  Recovery has been slow but consistent.  It’s completely apparent to me, that my intake of 8 pills a day of possibly flour and food coloring was the big culprit of my wild, almost four month flare.  Since then, I have been trying to eat very cleanly, no processed foods, trying to get my system back to normal again.  Luckily I am feeling fairly good again, but I really did learn a valuable lesson. That lesson is, my body doesn’t have “allergic reactions.”  Instead, over time, it reacts by an increase of inflammation, damaging tissues, organs, and joints.  As a result of this experience, I am far more aware than I ever was, that processed foods and food colorings are a big no-no.  Sure, they are extremely hard to avoid on a daily basis, and I have slipped up a little.  But in general, I am eating a very clean and organic diet and I’m hoping in time my body will continue to improve.

So ask yourself, what are you eating that might be fueling your fire?  Perhaps it’s time to try avoiding it for at least two weeks, which should be enough time to feel the difference.  And let all of us know what increases your inflammation, because we’d all like to know!  :)

Monolaurin: Quite the Superhero

If you’re looking for a supplement with superhero capabilities, Monolaurin might just be it. Read on to discover it’s “powers”.

Monolaurin can be found in human breast milk and certain vegetable oils, including coconut oil. Coconut water is also another great way to get monolaurin and reap incredible superhero benefits. Monolaruin is like an antibiotic only without the side effects. “Antibiotics kill unwanted micro-organisms, but they also kill many friendly micro-organisms. Monolaurin, on the other hand, does not appear to have an adverse effect on desirable digestive bacteria, but rather only on unwanted microorganisms.“-heranswer.com Beyond working like an antibiotic, Monolaurin can do so much more…..

Digestive Health: “Monolaurin promotes good digestive health. A good balance of foreign cells living in the digestive tract has a big effect on whether a person has good digestive health and also whether he has a properly functioning immune system. Monolaurin helps greatly to encourage good digestive health by making sure the contents of the digestive tract are in good balance at all times.”-www.ehow.com

Viruses, (Including Herpes and H1N1), Fungi (Including Yeast) and Bacteria ( Including E.coli): “There are many diverse benefits commonly associated with taking monolaurin, such as the fact that it is capable of balancing the body in a biochemical manner (encouraging self healing and prime health) and is capable of inactivating viruses, fungi and bacteria. It is non-toxic and does not create resistant organisms. It can be taken alongside the majority of medications.”-www.ehow.com

Monolaurin stops viruses, bacteria and fungi from replication: “This monoglyceride is remarkable in its ability to dissolve the outer envelope of viruses, bacteria, fungi, and certain protozoa. Monolaurin is made up of lipids (fats) and phospholipids. Most familiar is the triglyceride tested in cardiovascular risk assessments. …… the first obstacle in attacking pathogenic bacteria and viruses is getting through their outer protective membrane. Monolaurin does this. By destroying the outer membrane, the bacteria and virus is now rendered vulnerable to further destruction. Antibiotics do not dissolve the outer membrane. Their goal is to get through pores (porins), which can shift position. Monolaurin has also been reported to interfere with bacteria and viral ability to reproduce. This is accomplished by interfering with signal transduction, causing failure for the bacteria or virus cell to replicate (reproduce).”-healthkingenterprise.com

Immune System: “Monolaurin is a type of anti-microbial agent that helps the immune system. It is extracted from lauric acid, a fatty acid that also functions as a germicide. Lauric acid is a component of human breast milk, and microbiologists have found that it functions to strengthen the immune systems of babies (whose systems have not fully developed yet).”-www.ehow.com

AIDS: “Monolaurin is known to be effective against several lipid-coated viruses (a class which includes the AIDS virus), and against certain bacteria as well.”-www.aids.org

Safety of use: “One advantage to taking monolaurin is that it is known for being safe. It contains a major ingredient of breast milk, which is lauric acid. Newborn babies rely on their mothers’ breast milk to build up their immune systems. Breast milk contains an abundance of lauric acid monoglycerides.”-www.ehow.com

FDA Approved when buying Lauricidin: “Approved by the FDA, Lauricidin® is the only monolaurin supplement that has undergone clinical trials and laboratory testing. Its antiviral effect is due to monolaurin’s ability to disintegrate the lipid membrane of the virus and interfere with viral maturation. Some of the viruses inactivated by Lauricidin® are oral and genital herpes, Epstein Barr (chronic fatigue and mononucleosis), shingles, HIV, hepatitis C, cytomegalovirus, visna virus, measles, influenza, leukemia, viral pneumonia, vesicular-stomatitis, rubella, respiratory synctial virus, dengue virus, and lymphocytic choriomeningitis. Current research in Kenya with villagers suffering from HIV and other severe illnesses has shown dramatic improvements in the health of those given Lauricidin®.”-lauricidin.com

Inflammation:“In the viral study researchers were doing research in an animal model that parallels early HIV infection and transmission. They found that monolaurin had a powerful influence on signaling dendritic cells, reducing excessive inflammation, and thereby blunting the process that leads to viral infection. The researchers concluded that their study ‘opens a promising new avenue for the development of effective interventions to block HIV-1 mucosal transmission.’ While the flu was not part of this study, the mechanism involved suggests that monolaurin could be useful in helping to prevent excessive inflammation during flu infection by supporting the vital needs of dendritic cells.”-wellnessresources.com

I originally came across the topic of Monolaurin in Daily Strength, a website I frequent for support and as well as giving support. Someone suggested that Monolaurin, when taken on a regular basis, gave her more energy and kept her from getting sick. As I read further, I found more and more people who took monolaurin and found it to be a very powerful supplement. I did decide to take it for around two months. I believe I chose to take five a day, which is less than the therapeutic dose. Although Monolaurin isn’t a cheap supplement, I have discovered just now that lauricidin is pretty affordable. It’s also suppose to be more potent than taking a monolaurin supplement on its own. It comes in scoops of powder vs pills, which is a relief for me because sometimes I’m a little overwhelmed with pills. For a 4-6 week supply, the cost is $30. From everything I have read, it seems like monolaurin or lauricidin could be an essential supplement for people who have troubled immune systems and are on the alternative path. Many of us who suffer from autoimmune diseases also suffer from Epstein Bar Virus, Chronic Fatigue Syndrome and Candida, among many other things that may benefit by taking Monolaurin or Laurididin. Perhaps if those other issues were taken care of, our autoimmune diseases could have a chance at true healing over time.

Low Dose Naltrexone and Why YOU Should Take It!

Low Dose Naltrexone is taken in the form of 3mg to 4.5mg respectively speaking. It derives from the drug, Naltrexone which is taken in higher doses, generally around 50mg but can go up to 300mg. Though LDN comes from Naltrexone itself, it works in a completely different way, boosting the immune system. How does this non toxic drug work? When taken at bedtime, the body mistakes the low dose of Naltrexone as a brief blockade of opioid receptors. What this means is, your body thinks that something is trying to block it’s endorphins and thus, overcompensates, producing more.

“Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body’s immune system”-www.lowdosenaltrexone.org

A doctor named Dr.Bihari who graduated from Harvard had been working with patients who were taking heroin. Naltrexone prooved to be very successful in stopping heroin’s effects, basically in its tracks. Naltrexone is considered an “opioid receptor antagonist.” As time went on, Bihari’s research evolved. Some of his patients who had taken heroin had contracted HIV and so Bihari’s focus took a turn to help his suffering patients.

In 1985, Bihari discovered that a much smaller dose of naltrexone (approximately 3mg once a day) improved the immune system of a person with the virus HIV. As a neurologist, this discovery soon led to other findings. Not only did LDN help with AIDS patients, but has been said to help with Multiple Sclerosis, Parkinson’s, Cancer and other autoimmune diseases as well as Autism.

“LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production.”-www.lowdosenaltrexone.org

I have been on LDN for 376 days now. I have greatly benefited from its effects. It did reduce an enormous amount of swelling. My blurry vision and chronic sore throat went away, along with my most painful symptom, Pleurisy. I survived on just LDN for almost a year, but decided to add Serracor-NK to the mix which has improved me to a point of near remission. I know several other people with Rheumatoid Arthritis that LDN has helped tremendously as well as a couple of people with Parkinson’s and many people with Multiple Sclerosis. Luckily the Internet provides the resources needed to learn about a drug and it’s effects, when otherwise I would have never known about it.

Because our bodies are so vastly different, it’s impossible to know for sure if LDN will work for you. But because LDN is virtually non toxic with side effects that are so minimal you may not even notice them, and they are likely to be gone within a week, such as insomnia, LDN is a great choice if you’re trying to reduce inflammation, boost the immune system, and stop or slow the progression of disease like Parkinson’s.

If LDN is such a low cost drug, ranging around $1 a day, why isn’t the information of LDN more widely spread? The reality is, pharmaceutical companies are big business. Autoimmune diseases have some of the most costly drugs offered as options. People spend thousands, if not hundreds of thousands of dollars on their health. Sick people keep pharmaceutical companies in business. It’s no surprise as well that a lot of drugs like methotrexate for example, can lead to horrible complications as well as injures your intestines. It makes perfect sense to me, to start with your least toxic options first and if they don’t work, then move onto other medications. Unfortunately, it’s not easy to get a doctor to prescribe LDN. Your best bet is to go through a neurologist because they are more likely to have heard of LDN or to seek out a naturopathic doctor.

Clinical trials are being studied at Universities, but most clinical trials are funded by big pharmaceutical companies. Because Naltrexone was already approved in 1984, a pharmaceutical company can’t reserve a patent on LDN and therefore can’t make big money. If money didn’t make the world go round and people’s health and wellness were really at the top of our priorities, I honestly don’t think so many people would be sick and there would be a cure for cancer.