Auto-Immune Diseases

Medicare: Lawsuit charges government with denying care to thousands of chronically ill

San Jose Care Resource Guide: Yes,  we sometimes have to sue Medicare, i.e. our government, to get proper care.  Here is a link to the article in the  Chicago Tribune. This article was brought to our attention by Ernest A. Wahrburg, BA(PSY), MSW, LCSW (NC & NY)/LinkedIn

Quoting the Chicago Tribune: “…The  Center for Medicare Advocacy, which filed the lawsuit with Vermont Legal Aid on behalf of the National Multiple Sclerosis Society, Parkinson’s Action Network, Paralyzed Veterans of America, National Committee to Preserve Social Security and Medicare, and American Academy of Physical Medicine and Rehabilitation…”

So what is the Center for Medicare Advocacy? Seems like a large well organized pro-Obamacare health care advocacy site. In fact one one their article’s title is “HEALTH CARE REFORM DOES NOT CUT MEDICARE BENEFITS” ….

So why are they suing Medicare, A.K.A, the (Obama) government?

Quoting the Tribune, quoting them,

“…Under the law, Medicare is obligated to provide health care and therapy that are “reasonable and necessary for the diagnosis or treatment of illness or injury,” according to the legal complaint. Yet through the years, program administrators have decided that services will only be reimbursed if patients show signs of getting better, the complaint notes…..”

San Jose Care Resource Guide: This Medicare policy, of course, choose to ignore that , for many  chronically ill, not getting worse is the name of the game!

San Jose Care Resource Guide: Fact is, bombast or not, liberal government will cut and/or weazzle out of social obligations like anybody else….Particularly when the group targeted for cuts does not seem politically significant. I.e. the disabled….The Obama admistration will rather spend our healthcare money on worthy  causes like

See our previous posts on the topic

• With Medicaid waiver, California dives into health care reform (stateline)
• Multiple sclerosis and it’s Financial Burden: Comments on the Guardian’podcast
•  HealthCare: California’s Gov. Brown’s proposed steep healthcare cuts
• Ways The New Health Law May Affect You in 2011 (KHN)
• Health Care Law Should Help With Jail Inmate Treatment (thecrimereport)
• Medi-Cal and Gender Reassignment Procedures

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Natalizumab [Tysabri] therapy increases the percentage of patients showing stable or even ameliorated electrophysiological response (pubmed)

San Jose Care Resource Guide: 

In a nutshell: The study, posted in pubmed, is talking about possible improvement of nerve response time. or  evoked potential [WebMD].    As WebMD says , evoked potential is a fancy name for the time it takes for your nerves to respond to stimuli.

Sounds like  healing!

Talk to your Doctor

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Multiple Sclerosis: Endurance Horse Riders Are Riding with MS! (4UALL)

SJCRG: Butter Bea and  Alexandra North are two endurance horse riders with MS

Quoting 4UALL: 

• “….Last year, Butter Bea finished in the top ten, 21 out of 27 races. At the end of the racing season, she ran six races in less than a month, and won five of those six races. After four years of intensive training, Butter Bea has become an endurance machine with a competitive spirit that can be crushing at times.”
•  …. Alexandra North took up the sport of endurance riding in 1995, just a few months before she was diagnosed with multiple sclerosis. She is now in remission, which she credits to endurance riding.

Brave Riders!

Link to  4UALL for the fascinating article.

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Lupus and Fluorescent Light: Energy Saver CFL Bulbs Emit Ultraviolet light

San Jose Care Resource Guide: In an politically correct era when women are sometimes asked  not to wear perfume to an event, because of  concerns of allergic and other reactions, there is a very real dilemma.

Hidden Costs Of Energy Saving: the everpresent single enveloppe CFL Bulb

San Jose Care Resource Guide: Here is a link to a story by a Lupus patient   published in the spokesman.In a Nutshell:  lupus patients can react negatively to the Ultra Violet (UV) light that is generated by Compact Fluorescent Bulbs. and those bulbs are becoming the norm…

San Jose Care Resource Guide: This is comfirmed by this FDA  link, see the paragraph: ”..How close can we safely get to an operating CFL?..”  This FDA note is actually well done with some numbers to work with. Not all CFL emit the same UV amounts some are safer…

Read on the FDA note:     ”… As a precaution, it is recommended that these types [single envelop]  of CFLs not be used at distances closer than 1 foot, for more than one hour per day….

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Canadian woman experiences issues after receiving Multiple Sclerosis treatment CCSVI

San Jose Care Resource Guide: CCSVI or Chronic Cerebrospinal Venous Insufficiency is a theory about the cause of MS, where the blame is put on poor blood circulation in the brain. See link to Wikipedia for more background.  

According to Rebecca Cooney, as quoted in CBC News,  ”..It was like [after treatment] I had a vacation from MS for 4 weeks…”. But MS symptoms returned.
Was it a question of lack of treatment follow up, or something else?

Links between MS and the Immune system issue are well documented, and several drugs working on the immune system are FDA approved.  Maybe CCSVI is a subset of a complex problem.

Talk to your Doctor….

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Telephone-Administered Therapy and Quality of Life among Patients with Multiple Sclerosis (Pubmed)

SJCRG: Not everybody who needs counselling can easily go to therapy appointment.  Multiple Sclerosis (MS) patients are a very good subset  of  chronically ill class to evaluate different methods of phone therapy support. So we are happy to have found this study from the Center for the Management of Complex Chronic Care,Il.    The study formed two groups:

1. Patients given  telephone-Administered Cognitive-Behavioral Therapy
2. Patients given   telephone-administered  Supportive emotion-focused Therapy

The study concluded:  Cognitive-Behavioral Therapy  provided greater Quality of Life benefits compared with supportive emotion-focused Therapy.

SJCRG Notes: So it seems that phone therapy works and highly skilled therapy works best: Not a surprise, but documented

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Updates on the Treatment of Lupus Nephritis (Pubmed)

SJCRG: Finally an upbeat paper on the treatment  progress of  Lupus, allbeit on a subset:  Lupus Nephritis (Lupus of the Kidneys) Click here for the Link  Key is on  Mycophenolate mofetil and less toxicity in the treatments.

Talk to your Doctor..

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Systemic Lupus Erythematosus: Safe and Effective Management in Primary Care (ScienceDirect)

SJCRG: This paper, entered in sciencedirect  outlines the current course of treatment, as the authors see it. Seems that  they are prescribing an aggressive approach.

SJCRG: Diagnosis of Lupus as “…A diagnosis is made by confirming the presence of at least 4 of 11 criteria proposed by the American College of Rheumatology…”  4 out 11 seems to say there is a tremendous variety in the way Lupus raises it’s ugly head. Room for mistakes? Here is a link to the Mayo clinic detailing the criterias.

Talk to your doctor

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Comments on “FDA clears Cymbalta to treat chronic musculoskeletal pain”

SJCRG:  Good news, more treatment options for chronic musculoskeletal pain! Here is the link to the FDA press release.   “..Cymbalta was first used to treat major depressive disorder in 2004..” 

SJCRG:  Very interesting is the FDA’s philosophy for drug approval for serious illnesses:

Quoting:  “..While these serious side effects have been associated with the use of Cymbalta, they have occurred in less than 1% of treated patients. There are a finite number of drugs available for the treatment of chronic musculoskeletal pain, all of which are associated with rare, serious side effects. There are patients in whom none of the available treatments are effective. ….

So let us do the math: According to the US Govn’t “..An estimated 1.5 million adults had rheumatoid arthritis in 2007….”
…so 15,000 patients are expected to come down with serious side effects.

 But  “..Since its initial approval, about 30 million patients in the United States have used Cymbalta..[for other conditions]..”  Let us do the math now for that larger population: 1% of 30 million= 300,000 patients with serious side effects!  half of the Multiple sclerosis popultation in the US!

Please do a careful risk/reward analysis with your doctor if you need Cymbalta, or any of these potent drugs….

Cymbalta is no free ride…

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Diabetics and Compromised Immune System: Could Cupron Anti-Microbial Cloth Material be Beneficial?

CareResourceGuide: Anti Microbial Cupron socks were sent to the Chilean trapped miners (Wall Street Journal)

Anti Bacterial Socks from Cupron

 CareResourceGuide:   Could they help you? Ask your doctor if such socks would protect diabetics from infections. Check out roughness too.

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