nomoredrugs (allowed) for me - not even an option

By nomoredrugsSun, 12/26/2010 - 11:43pm

nomoredrugs (allowed) for me - not even an option - though I wouldn't want to take them after this.

C.R.A.B. – copaxone, rebif, avonex and betaserone – all of these are only supposed to reduce attacks by magic number (1/3) (how can they accurately predict that ?).
http://www.webmd.com/multiple-sclerosis/news/20090504/epstein-barr-virus...
For years there has been rumours of a link between the viral infection - Mono or mononucleosis, an infectious disease caused by the EBV (Epstein Barr Virus). I had mono at age 8, went chronic. Was given penicillin (a no-no). I developed a severe allergy reaction. I developed both purpuras - henoch schonlein as well as thrombo-cytopenic purpura. Weighed twenty-something pounds; nearly died. I had symptoms; at 45 I had a full blown terrifying attack – could not walk, etc. Got tested –MS. Warned neuro of immune history when Copaxone prescribed. When problems showed I was told I was doing it wrong, etc. Saw GP and sent to immunologist DR. Immunologist told me I had developed an idiopathic allergy reaction to milk, cheese (dairy), eggs, tomatoes, oranges, chocolate, (chemicals –sulfa, MSG, & aspartame-aesulfame), some metals (nickel, silver), certain botanicals , and molds. He insisted that I be taken off Copaxone right away. I can no longer take any of the C.R.A.B. treatments.
So now have this additional impediment/difficulty to deal with; and, in addition to MS, I get to live with fear from not having any protection at all for this degenerative disease. What gets me is the arrogant way I have not been listened to.
One has to question -
1) When C.R.A.B can do this to a hyper immune system (and only claims to reduce attacks by (30% or thereabouts).
2) There are risks of heart damage Mitoxantrone, and
3) There is risk of brain infection deaths from Tysabri.
4) For people that develop hypersensitivities to drugs (and this is an immune-issued disease) there is nothing for them –

It feels arrogant that angioplasties can be denied by people:
1) who do not look into the checkered past of many of these existing drugs
2) check out the deaths and damage from these drugs
3) overlooked people like me who cannot tolerate anymore manipulations to their immune system.
4) Deny people with MS this option when the other options are unavailable to them – leaving them unable to do anything to slow this quality of life stealing degenerative disease. Basically flies in the face of the Hippocratic Oath.

The-powers-that-be say CCSVI angioplasties are unsafe because unproven - when there already have been millions of angioplasties performed in North America. The stent may be problematic – but even an angioplasty 2X per year is cheaper and more effective than any of these drugs.
http://angioplastyforall.com/content.php?doc=18

This stance seems arrogant – yes; heartless/no compassion/soul-less – yes and yes and yes; and feels(appears) like it is almost criminal does it not?

2 Comments

There is a difference between

Ccsviclinic on Wed, 01/12/2011 - 9:30am

There is a difference between responsible reporting and what Melissa Martin chose to write about the CCSVI Clinic in this article. She was in possession of factual information and documents that put the CCSVI Clinic in a favorable light but chose to withhold the information she received from the physicains and researchers at CCSVI Clinic that would have conflicted with her agenda to smear our reputation in order to sensationalize her story. At no time did anyone from the CCSVI Clinic pressure patients into going to India for the Liberation Procedure. She should have considered that the one single person who made that claim clearly had her own agenda because she was disheartened by her 'borderline' results. We simply provide information to people about our enhanced hospital stay and aftercare program should a patient decide to have the procedure. You can't pressure someone to make an important decision about their health and all of our literature clearly states that. These MS patients are more knowledgeable about the CCSVI condition and about the options for treatment than most physicians are. To suggest that they can be pressured into a decision to have the procedure done in India is ludicrous. Patients who have signed up to be part of our open-ended study on the safety and efficacy of an enhanced aftercare protocol to reduce the rate of re-stenosis versus having the procedure on an outpatient basis (which may be contributing to long term failure of the procedure) have done so to ensure that they are getting the best care possible and because they want to be part of the important work we are doing for MS patients. http://www.ccsviclinic.ca/

New Ethics Board Study Application for Enhanced CCSVI Treatment

Ccsviclinic on Thu, 12/30/2010 - 11:12am

It is estimated that the failure rate of the “liberation therapy” may be 50% or higher, even through the most experienced and best-known surgeons in Poland and Albany, NY. As more and more people receive the therapy there is growing concern amongst patients that the procedure needs to include a post-procedure protocol that is more effective than simply releasing the patient from the hospital or clinic within hours or a day of the procedure.
CCSVI Clinic Physicians have applied for an International Ethics Board study approval entitled: “PROSPECTIVE, OPEN-LABEL STUDY OF THE SAFETY, EFFICACY AND RE-STENOSIS RATES IN MS PATIENTS WITH CCSVI UNDERGOING ENDOVASCULAR TREATMENT WHO RECEIVE AN ENHANCED HOSPITAL AFTERCARE PROTOCOL. Important previous studies on non-MS patients who have had the same venous angioplasty indicate that it’s critical to position and movement control patients post-procedure, monitor them for days afterward in the hospital with various imaging techniques, and re-treat if necessary. CCSVI Clinic is already sponsoring patients for this protocol with a 10-day stay in the hospital where patients will be imaged daily, post procedure. If there is evidence of re-occlusion, they will be taken back to the OR and re-treated. Past studies of non-MS patients with the same venous blockages have noted a cascade of failure points distally in venous vessels post angioplasty, and the hypothesis proposes that the study on MS patients will produce the same results. Once home, patients will be screened and interviewed at regular intervals by CCSVI Clinic Physician Researchers for several years after the treatment to study the changes and make comparisons between those who have followed the protocol and others who have had the procedure on an outpatient basis.
It should be mentioned that our research is under much scrutiny and attack from elements that are trying to control the industry and the dialogue. A well-organized campaign to discredit CCSVI Clinic and our research is underway in the social media. We would ask you to have the independence of thought to see through their campaign of deceit.
Regular research updates will be published on the CCSVI Clinic website http://www.ccsviclinic.ca/ . Questions about participation may be directed toward the CCSVI Clinic administration at 1-888-419-6855.