Erik

MS 150

Mar 302013

ChrisG My coworker Chris has been biking the MS 150 for years now. I received an email the other day that he is again doing the ride and seeking donations. If you are looking to give to the National MS Society I recommend you donate through Chris. I am thankful to Chris and the other bikers for their efforts. Safe travels.
You can click here to quickly contribute or here is an excerpt from the email he sent me:

As a past donor I want to thank you for your support in prior years and ask for your support again this year. I had the opportunity to hear a wonderful speaker with MS address the Ride Marshals group that I volunteer with and your contributions really do make a difference in the lives of those stricken with this debiliting disease. – Chris

Every hour, someone is newly diagnosed with multiple sclerosis, an unpredictable disease of the central nervous system.

I registered for the 2013 BP MS 150 because I want to do something about MS now. I’m asking you to support my efforts with a tax-deductible donation.

The National Multiple Sclerosis Society is dedicated to creating a world free of MS and they need our help. It’s faster and easier than ever to help: Simply click the link at the bottom of this message or, if you prefer, send your check payable to the National MS Society – P.O. Box 4125 – Houston, TX 77210-4125. Be sure to write my name and “BP MS 150” in the memo section of your check.

Your contribution funds crucial MS research and helps families with MS lead powerful lives. I appreciate your support and promise to update you.

For more information about the National MS Society, how proceeds help and other ways you can do something about MS now, visit MakeYourMarkMS.org.

Click here to visit my personal page.

Inexplicable

Lyme, Multiple Sclerosis No Responses »

Mar 252013

I was trying to think of a word that best described MS/Lyme and I think the word is inexplicable. For me, years ago, life was going along normally and then out of nowhere big problems started. I tried to write them off, and some went away. But much like the old adage problems that go away by themself will also come back by themself. So now as much as life is full of inexplicable things I now have the MS/Lyme which is a constant on and off for no reason. It is better, but not gone.

While not new news the weirdest thing, other than getting MS, was when Katja was “upright” again. I like to hear inexplicable stories of things going good for a change.

Salt vs MS?

Multiple Sclerosis No Responses »

Mar 132013

I see all the new articles that they have found a new link to what causes MS: salt. Sadly super sizing the fries causes more than high blood pressure and cholesterol issues. I read the article, and I should get an award for not going to sleep, and still fail to fully see the issue. A T cell that helps regulate your sodium levels increases with heavier salt intake. Sounds like the body working normally and well, but in the “mouse model” it was bad. If they would have just said that a bad diet is bad for you I could go with that, but linking it to an essential chemical for the body has jumped the shark.

I have noticed two other correlations with Multiple Sclerosis: Breathing and Water Consumption. Both of these happened in 100% of people with MS. This should also be investigated for possible links to the disease.

Headache

Multiple Sclerosis No Responses »

Feb 132013

As I was trying to go to sleep the other night with a MS headache I was wondering if that is the most common symptom. I have written about headaches (9 years ago – time flies) before and this one fit the pattern. Like other people I get normal headaches which are usually sinus or caffeine I guess these are just a bonus. This last headache was a good example of a MS headache because it repeated for days and only affected my right temple which I believe is a first for me. Caffeine headaches for me are always both temples. The most common type of MS headache for me is one affecting the parietal area, back of the head. I have had a repeated lesion in the back of my brain so that seems to makes sense. This last headache was low on the pain scale, maybe a 3, but it was not compatible with sleep because apparently I am a pansy. Fortunately ibuprofen has always taken care of the headaches.

Neurology and Astrology

Lyme, Multiple Sclerosis No Responses »

Nov 202012

Back in February I was contacted by someone wanting to discuss my MS condition and when I was born, etc. In my post I noted that Ron the astrologer predicted a flare up, with no personal information from me. Maybe he is psychic too.

Apparently per this article Ron was onto something. Neurologists now links birth month to your risk for getting MS. Paraphrasing the article if you are a Aries or Taurus you are in trouble, but if you are a Scorpio or Sagittarius you should be fine. No doubt some time soon your neurologist will use Tarot cards for treatment and diagnosis. I eagerly await my reading.

Less scandalously this is just another Vitamin D study and linking it back to pregnancy. I am all for blaming my parents but this is a bit of old news.

Nothing Can Be Normal

Lyme, Multiple Sclerosis No Responses »

Nov 172012

For a few days I had pain in the balls of my left foot. I had this type of pain back in 2007 which my LLMD, at th\e time, blamed on gout. No surprise the antibiotics/antimalarials fixed the problem with no diet change. The pain had never come back until recently. Even though it had been years I immediately wondered if it was MS or Lyme. Probably just a weird pain. I am sure most people have weird pains occasionally. Having been diagnosed with a chronic problem I think my natural inclination is to “worry” more over normal pains/things. Maybe that is another complaint I have with the diagnosis. Nothing can be normal again.

Interferons are They a Rational Drug

Multiple Sclerosis No Responses »

Aug 262012

I think Canada study brings up a great question because in hindsight are interferons even a rational treatment? What are the interferons treating? Interferons are not the best understood thing in the body, but importantly they are already made in the body. Why when we are already making interferon b1a do we want to inject more? And if I recall it made out of Chinese hamster ovary cells. I was never checked to see if my interferon levels were low and needed boosting with a shot. Furthermore, in the body interferon is made as needed as an immune response to viruses, etc. Is the contention with taking the interferons that I have an infection that they will fixed. I certainly know the injections certainly never kept me from getting sick with other “infections.”

I decided to take a different approach and called MS Lifelines for Rebif to ask about this. I spoke with Karen. Karen emphasized that it is an immune modulator but I could not get any more detail, just the nebulous immune modulator. She did agree that it is a naturally occurring protein but the exact mechanism by which it works is unknown.

It may be that the drug that they do not know how it works never worked at all, and that is why no one knows how it works. The Canada study seems to point that the placebo effect was not working either. Maybe people just like injecting things. Later this year I will be selling injectable saline specially made to treat MS.

Beating a Dead Horse

Multiple Sclerosis 1 Response »

Aug 252012

Hardy any time passes before I see an article about someone signing up for a CCSVI trial or another trial proves it does not work. I was looking at my original objection to CCSVI today and was shocked that it has been three years. I am not surprised that the treatment is not working. How long will it take before they give this dead horse a break. The one thing I am very pleased with about CCSVI is that it was a new thought to MS. We need a lot more fresh thought brought in if any progress is going to be made. I give kudos to those willing to do the trial, but I think this one has run its course.

Neurologist Visit

Doctor Visit, Multiple Sclerosis, Neuro No Responses »

Aug 242012

That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth.

I probably invited invited a much larger discussion because I asked his thoughts on the Canada study that < href="http://blog.thesmithlife.com/?p=1344">Interferons (aka Rebif) are worthless. He said quite a few patients had brought that study up, but he had not read it. Very disappointing; I thought that was his job. He gave a talk about why Rebif is the best choice. I know everybody has a preferred bottled water even though it is just water; is looks like Rebif may be the drug equivalent of that and he had nothing to say!

Then we discussed Tysabri. He thinks it is a great drug. I think arsenic will also fix all of your MS problems, but thats just me. He thinks you need to be the right candidate for the drug and if so he will refer you to another doctor who will handle it. He did acknowledge that even under ideal circumstances the longer you on the drug your odds off death increase. Basically no more than two years of treatment. What does two years of treatment buy you in the bigger picture?

Last on the discussion list was the oral drugs. Of those we only discussed Gilenya. He noted two things. People who are taking injections were not leaving for an oral drug. Interesting because there has been a lot of interest in oral drugs. Or does it speak to the added risks with the oral drugs albeit work better. That was not discussed. The other thing we discussed about Gilenya is that your first dose is given at an infusion center where you can be monitored. Basically doctors do not have room to monitor you and if you had problems while waiting in the waiting room for hours they are liable. The drug company’s solution make another group liable hence the infusion center; at least that is more comfortable while waiting. He also noted Gilenya reduces your white cell count. He had one patient that took her count really low, but by other metrics it was okay. She fell and required surgery. She then proceeded to not heal and get an infection. He said he did not know if Gilenya caused the not healing/infection but it was quite likely. She had to be removed from the drug. Fortunately, it is not another death story but another example of the drugs causing problems.

Lastly he wanted me to get an MRI. It would be interesting to see where I am at, but I am not interested in throwing my money at academic questions. He said if I still had a large lesion he would refer me to a MS specialist, the one he uses for Tysabri. I am not treating MS so he is going to refer me to a specialist? To be fair I am not doing anything. I’ll think about all of this tomorrow.

This is What has Become of Mannatech?

Lyme, Multiple Sclerosis 2 Responses »

Aug 202012

After years of not getting any comments or emails about Mannatech or Ambrotose I got an email a few weeks ago. Rather than a sales pitch it was a take down notice on some of my posts. That is a fist. Of course I never advocated the use of the products so the emails are SPAM or script junk. If they are scripts searching the web I would have also have expected Mannatech’s Ambrotose Saved My Soul to be included in the take down notice. Against my better judgment I replied to two of these emails with no response. No doubt I will continue to get these junk emails.

For a product that could supposedly cure everything Ambrotose certainty came at a great price. Of souse they can not legally say that which had to hurt sales. What does the product do other than cure everything? Furthermore, while I am not going to take their product because I think it is junk feel free to give it a try. I do not think it will hurt you.

Transcript of the email below.

8/1/12
From: jbishop@mannatech.com
CC: mannatech_enforce@opsecsecurity.com

Subject: Cease and Desist

RE: Impermissible Use of Health Claims Attributed to Mannatech Products
http://blog.thesmithlife.com/?p=254
http://blog.thesmithlife.com/?p=340
http://blog.thesmithlife.com/?p=563

Mannatech, Incorporated (“Mannatech”) routinely reviews the internet to insure our products are being properly represented to the public. Health claims which go beyond the specific claims approved for Mannatech products and/or claims which state, suggest or imply Mannatech products cure, treat, mitigate or prevent disease are against Mannatech policies.

Your website (identified above) contains statements which are contrary to Mannatech”s policies. You are hereby requested to immediately remove from your website any statement which (i) states, suggests or implies Mannatech nutritional products prevent, treat or cure disease, (ii) states, suggests or implies Mannatech nutritional products are a substitute for a doctor”s standard of care, and/or (iii) otherwise violates Mannatech”s Associate Policies & Procedures.

If you have any concerns or questions relating to the issue raised herein please contact the undersigned at jbishop@mannatech.com. We further request that you contact the undersigned within five (5) business days from the receipt of this letter to (i) confirm the offending statements/representations have been removed from the website and (ii) confirm you will refrain from making such representations in connection with Mannatech nutritional products in the future.

The removal of this type of impermissible information from the internet is of great importance to protect Mannatech”s right to conduct business. Mannatech is prepared, if necessary, to take legal action to secure your immediate compliance with this demand, including litigation seeking injunctive relief, damages and attorney fees as allowed under Texas law. It is our hope, however, that you now fully appreciate our concerns and will take prompt action to avoid escalating the matter further.

We thank you in advance for your immediate attention and cooperation, and again stress the importance of complying with our demand and contacting the undersigned as requested herein.

Respectfully,

The Mannatech Legal, Ethics and Compliance Department

Note: Nothing contained in this letter shall be construed as a waiver of any rights Mannatech, Incorporated has at law or in equity, all of which are expressly reserved.

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