Sunday, May 19, 2013

I finally started BG12-tecfidera

Wow, that's all I can say.  Mild, if any side effects.  Took a niacin to flush 3 days prior to starting so i could recall and recognize what a "flush" actually felt like, since that seems to be one of the most common side effects.  Well in retrospect the niacin flush was 10 times stronger, making the BG12 flush very tolerant.  It seems to come 5-7 hours after ingestion.  No stomach problems as of yet either.   This is a walk in the park compared to the days of avonex suffering.  Knocking on wood though as the starter dose is halved and i don't take the full dose until 3 more days.  Dosing is morning and evening and i try to take on a full stomach as it was recommended on other sites.

Even more exciting, was that 3 hours after i swallowed my very first dose the squeezing feeling in my left forearm which has been flaring  up a lot lately, just vanished as quickly as it came on.  There are definitely anti-inflammatory properties as i have read through out various literature.  I experienced a mild headache today in which one advil conquered all.

Ironically i was babysitting my three yr old niece and after dosing she broke out in a 102 fever and the script specifically states "avoid people with colds and virus's".  So this is yet to be determined whether  i will catch her virus or not.  I'm sure it takes some time for your white blood cells to decrease.  We shall see- besides i usually catch every other bug she brings home.

Can this be for real?  Am I dreaming?  Will there be a news flash in a few months stating new findings and dangers associated with tecfidera?  I'm optimistically cautious, but enjoying my new MS friendly drug.  Will keep updates coming.....

Tuesday, May 7, 2013

BG 12 - TEST GUINEA PIG

 
test guinea pig
 
Wow, so many changes going on in my life in a good way for the most part.  I finally convinced my husband to downsize our NJ residency.  James likes to live glamorously as I did too in the past.  Actually I shouldn't say past as I have this tremendous and beautiful  home in Florida, in which I consider my retirement home - the one that I will die in.  But economically speaking James cant work till he's ninety and when he does decide to retire it will be very difficult to continue his life style when inflation is higher with no income stream. I'm more the hippy type, probably because I grew up with wealth, it never impressed me nor did i ever use it as leverage for my ego.  I like beautiful things-but that being said, they don't need a designer name behind them.  I'm an artist and see beauty in so many fashions.  Being that I have MS, IL be happy just to be able to see the sunrise on the beach, preferably delray, even if its in a wheel chair.  But for now I'm just following the flow of what the universe spits out at me.   One of the biggest changes that occurred this past month is that I've become a district manager for a seriously beneficial health and wellness company.  Something I will touch upon in a later blog, as i don't want my add to get the best of me.
 
Returning to where I begun, this is a moment of change.  A new business, a new , NJ residence, I'm,packing in between my stream of thoughts, and a new  I mean NEW medicine.  That medicine is the BG12, aka tecfidera.  Just recently after my latest MRI's , I was forced in a rush decision to go back to avonex, the drug that in the past showed great promise and security because i got out of it alive.  But perhaps because our body chemistry changes over the years or for some other strange reason, my last experience with avonex had me feeling like a dying cancer patient for 5 days after the shot.  I was weak, I was dizzy, confused mentally and cognitively  I felt as though I was losing brain quality.  It scared me.  Enough to call my doctor by day five and say I CANT TAKE IT anymore.
 
Now getting into the options available to me and with a lot of google activity, i learned that by far the pill forms of ms meds were more significantly effective and tolerable.  But there are attachments that cohere to that statement.  WIth both gilenya and aubagio , certain precautions had to be in play.  Gilenya had a heart risk and required you to stay being monitored in your doctors office on your first dosing.  I recall asking the nurse,"well if my heart does stop while I'm here-then what?' She assured me that I would be revived.  That didn't sit well with me and there were reported deaths from this medicine.  Now looking at aubagio, hmm, constant liver tests due to reported liver failure and hair loss? Nope, Notta, aint doing that.  So then the BG twelve comes into play.  Actually my mother had sent me an article about it over the winter when it still was not available on the market. Apparently no one during test trials died! Now we're talking, more please.  Then the side effects such as flushing, diarrhea and indigestion, well I did a lot of niacin flushing, diahrea- did that from the multivitamins I used to take along side a liver cleanse-doable I suppose. SO whats the catch? The efficacy rate looked promising, not that there is any cure. Google on.....and there's more to learn.
 
 
The active ingredient in a drug that’s expected to become a popular treatment for multiple sclerosis has been linked to four European cases of a rare but sometimes fatal brain disease called progressive multifocal leukoencephalopathy (PML).

The ingredient, dimethyl fumarate, is used in a drug called Fumaderm that was approved in Germany in 1994 to treat the skin condition psoriasis. It is also in a different but closely related medication called Tecfidera, which was just approved by the U.S. Food and Drug Administration in March for the treatment of multiple sclerosis (MS). It is known as a fumaric acid ester, which is commonly used as a food additive and has been used to treat psoriasis in Germany for 30 years.

According to reports published in the April 25 issue of the New England Journal of Medicine, however, four patients who were taking Fumaderm to treat their psoriasis developed PML.
 
Concerned? Yes I am, as this drug was just introduced - are there going to be flare-ups regarding its safety once its ude in the masses? We shall see.
 
On the positive note however the exact ingredient was not directly been proven to be the culprit of pml, they are saying it was a combination that was used in the psoriasis meds.  Secondly, if there are only 4 known deaths, how many is that percentage wide over a twenty year span of multiple users.  Did One million psoriasis sufferers use this.  Because if that's the case then four deaths isnt so scarey as long as mine wont be the next.  Lastly.  These people that died were on the meds for four years.  So after the first year and with the progression of new meds emerging, il probably have another few options by 2014, before the risk factor kicks in. 
 
I spoke to my doctors office today who is sending out the script to Caremark. I asked her if they would do a white blood cell count prior and could I be tested for jvc, which is a precursor dormant virus that is seen in pml patients.  The nurses response to me was" I don't know, we never prescribed this yet, Imo calling Caremark now."  Wow, i am truly the office gunnea pig.  But will i have the courage to swallow these pills when they arrive.  That is yet to be determined.
 
 

Wednesday, May 1, 2013

ASPARTAME and Multiple Sclerosis

MAKE SURE & READ ALL  - sent to me from a friend via email
SWEET POISON...
A MUST READ TO THE END!

In October of 2001, my sister started getting very sick She had stomach spasms and she was having a hard time getting around. Walking was a major chore. It took everything she had just to get out of bed; she was in so much pain.

By March 2002, she had undergone several tissue and muscle biopsies and was on 24 various prescription medications. The doctors could not determine what was wrong with her. She was in so much pain, and so sick she just knew she was dying.

She put her house, bank accounts, life insurance, etc., in her oldest daughter's name, and made sure that her younger children were to be taken care of.

She also wanted her last hooray, so she planned a trip to Florida (basically in a wheelchair) for March 22nd.

On March 19, I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.

I recalled an article a friend of mine e-mailed to me and I asked my sister if she drank
diet soda? She told me that she did. As a matter of fact, she was getting ready to crack one open that moment.

I told her not to open it, and to stop drinking the diet soda! I e-mailed her an article my friend, a lawyer, had sent. My sister called me within 32 hours after our phone conversation and told me she had stopped drinking the diet soda AND she could walk! The
muscle spasms went away. She said she didn't feel 100% but, she sure felt a lot better.

She told me she was going to her doctor with this article and would call me when she got home.

Well, she called me, and said her doctor was amazed! He is going to call all of his MS patients to find out if they consumed
artificial sweeteners of any kind. In a nutshell, she was being poisoned by the Aspartame in the diet soda.. and literally dying a slow and miserable death.

When she got to Florida March 22, all she had to take was one pill, and that was a pill for the Aspartame poisoning! She is well on her way to a complete recovery. And she is walking! No wheelchair! This article saved her life.

If it says 'SUGAR FREE' on the label; DO NOT EVEN THINK ABOUT IT!

I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on
'ASPARTAME,' marketed as 'Nutra Sweet,' 'Equal,' and 'Spoonful.'

In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant. I stood up and said that I was there to lecture on exactly that subject.

I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus.

Many people were being diagnosed in error. Although multiple sclerosis is not a death sentence, Methanol toxicity is!

Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers.

The victim usually does not know that the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition... We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.

In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We've seen many cases where vision loss re- turned and hearing loss improved markedly.

This also applies to cases of tinnitus and fibromyalgia. During a lecture, I said, 'If you are using ASPARTAME (Nutra Sweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs,
Cramps,
Vertigo,
Dizziness,
Headaches,
Tinnitus,
Joint pain,
Unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!' People were jumping up during the lecture saying,'I have some of these symptoms. Is it reversible?'

Yes!
Yes!
Yes!
STOP drinking diet sodas and be alert for Aspartame on food labels! Many products are fortified with it! This is a serious problem. Dr. Espart (one of my speakers) remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice; a nurse stated that six of her friends, who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!

Diet soda is NOT a diet product! It is a chemically altered,
multiple SODIUM (salt) and ASPARTAME containing product that actually makes you crave carbohydrates.
It is far more likely to make you GAIN weight!

These products also contain formaldehyde, which stores in the fat cells, particularly in the hips and thighs. Formaldehyde is an absolute toxin and is used primarily to preserve 'tissue specimens.'

Many products we use every day contain this chemical but we SHOULD NOT store it IN our body!

Dr. H. J. Roberts stated in his lectures that once free of the 'diet products' and with no significant increase in exercise; his patients lost an average of 19 pounds over a trial period.

Aspartame is especially dangerous for diabetics. We found that some physicians, who believed that they had a patient with retinopathy, in fact, had symptoms caused by Aspartame. The Aspartame drives the blood sugar out of control. Thus diabetics may suffer acute memory loss due to the fact that aspartic acid and phenylalanine are NEUROTOXIC when taken without the other amino acids necessary for a good balance.

Treating diabetes is all about BALANCE. Especially with diabetics, the Aspartame passes the blood/brain barrier and it then deteriorates the neurons of the brain; causing various levels of brain damage, Seizures, Depression, Manic depression, Panic attacks, Uncontrollable anger and rage.

Consumption of Aspartame causes these same symptoms in non-diabetics as well. Documentation and observation also reveal that thousands of children diagnosed with ADD and ADHD have had complete turnarounds in their behavior when these chemicals have been removed from their diet.

So called 'behavior modification prescription drugs' (Ritalin and others) are no longer needed. Truth be told, they were never NEEDED in the first place!

Most of these children were being 'poisoned' on a daily basis with the very foods that were 'better for them than sugar.'

It is also suspected that the Aspartame in thousands of pallets of diet Coke and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.

Dr. Roberts warns that it can cause birth defects, i.e. mental retardation, if taken at the time of conception and during early pregnancy.
Children are especially at risk for neurological disorders and should NEVER be given artificial sweeteners.
There are many different case histories to relate of children suffering grand mal seizures and other neurological disturbances talking about a plague of neurological diseases directly caused by the use of this deadly poison.'

Herein lies the problem: There were Congressional Hearings when Aspartame was included in 100 different products and strong objection was made concerning its use. Since this initial hearing, there have been two subsequent hearings, and still nothing has been done.. The drug and chemical lobbies have very deep pockets.

Sadly, MONSANTO'S patent on Aspartame has EXPIRED! There are now over 5,000 products on the market that contain this deadly chemical and there will be thousands more introduced. Everybody wants a 'piece of the Aspartame pie.'

I assure you that MONSANTO, the creator of Aspartame, knows how deadly it is.

And isn't it ironic that MONSANTO funds, among others, the American Diabetes Association, the American Dietetic Association and the Conference of the American College of Physicians?

This has been recently exposed in the New York Times. These [organizations] cannot criticize any additives or convey their link to MONSANTO because they take money from the food industry and are required to endorse their products.

Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding pregnant women, children and infants.

The bill would also institute independent studies on the known dangers and the problems existing in the general population regarding seizures, changes in brain chemistry, neurological changes and behavioral symptoms. The bill was killed.

It is known that the powerful drug and chemical lobbies are responsible for this, letting loose the hounds of disease and death on an unsuspecting and uninformed public. Well, you're informed now!
Please print this out and/or e-mail to your family and friends.