On May 1st 2010,
I decided to go off "Copaxone" AKA "Glatiramer Acetate", a daily injection that I was on for 5 yrs to help reduce the severity and frequency of MS attacks by 20-30%... maybe. There is no real way of knowing if the drug is working since all MS patients are different.
As I am sure most of you know, I lost vision in my left eye (optic neuritis) due to my MS which spawned the Crystal Patches campaign to help me raise money to get tested for CCSVI, a controversial new finding by Dr. Zamboni from Italy, linking a vascular disorder with MS. Losing vision was actually a push for me to follow through with my goal to go drug free. My neurologist, Luanne Metz, would probably be disapointed to know that she is a big reason why I decided to finally make this scary and lonely choice.
Why did I go drug free?
I went drug free for several reasons. If I sound a bit bitter, it is because I am....
Reason #1:
Since my diagnosis, my neurologists have often made it seem like an MS patient has no control over this disease as it is completely unpredictable. They focus on how serious this disease is and how ugly an MS patients' future can look like, especially if you do not go on the drugs prescribed.
Now remember, I am not saying this because my profession is in the natural health field nor am against ALL pharmaceutical drugs and medical doctors. I am speaking through my personal experience as an MS patient who cried many tears after hearing the fear tactics that my Canadian neurologists have instilled in me and after taking a daily injection for 5 yrs with little to no improvements with my disease (i.e.- new lesions in my brain and spinal chord were still appearing on MRI scans and I was still experiencing minor relapses and many symptoms).
In MS, you CAN take control and be proactive in aiding your body to heal itself. You DO have red flags that your body screams at you before going into relapse. You do NOT have to rely on drugs and expect to sit back and do nothing other than cross your fingers in hopes that they work.
Reason #2:
When Dr. Zamboni's publishings on CCSVI became public, you could not even call the MS Society OR the MS doctors or MS nurses to ask questions about it, even though stories of MS patients going from wheelchairs to walking post-Liberation Treatment became more and more prevalent (Donna, the lady who went to India with me had amazing results).
When I saw my neurologist, Luanne Metz, to talk about my optic neuritis, I asked her opinion about CCSVI and the "liberation treatment". She immediately shut the idea down with excuses like "there is a strong psycho-somatic effect with the Liberation Treatment", "I do not reccomend it and do not see any point in researching it further."
Well, maybe it is a psycho somatic effect and not the final answer or cure for MS, but is it not worth pursuing when results seem to be so amazing? And if Luanne Metz, the other neurologists and MS pharmaceutical reps really believe that the liberation treatment is an effective placebo, then why are they trying to get me on liver toxic drugs ("Rebif" specifically, a drug that you have to take monthly blood tests because of potential liver damage shown in the clinical trials)? versus prescribing me an unharmful sugar pill? Or better yet become a psychologist to enhance the psycho-somatic placebo effect? The point is, after that appointment I decided to not only get tested for CCSVI but to also go against what Luanne prescribed and go off all drugs.
Reason #3:
After my diagnosis , it was not until I started eating and thinking healthier that I really noticed huge improvements with my disease. I was able to train full time again and even qualified to race in the 2010 Olympic trials, finishing 10th in the 1000m long track. I give no credit to Copaxone, and 100% credit to diet, lifestyle and my friends and family who have given me so much support along the way!
Reason #4:
Copaxone costs about $1500 a month! I know this sounds pessimistic but what pharmaceutical company who is making that kind of money wants to find a cure? Especially since you do not necessarily die from MS, meaning you could be taking those drugs for a LONG time.
Reason #5:
Taking a daily injection that causes pain, bruising, swelling and hard lumps...sucks.
Reason #6:
Going off drugs will force me to be extra proactive and keen on finding alternative remedies for multiple sclerosis and overall health
How Am I feeling 6 months drug free?
I am relapse free since going off drugs!
I am back training full time with lots of energy, strength and working on getting my endurance back (started training later than normal this year so have a bit of catching up to do).
I lost vision in my left eye while on Copaxone and it has not fully come back and may never. I still find it very interesting, though, that I have 80% vision when my heart rate is under 100bpm but within seconds of exercising and my heart rate goes above 100bpm, I lose almost 100% vision again. This occurence is what still has my hopes up that there is something vascular going on and that I may still be eligible to get the liberation treatment in the near future. My tests in India showed that my left jugular vein is half the size of my right....maybe this IS the cause. I'm determined to find out.
My next MRI is in January 2011 and will be the real test to see whether my disease is progressing, staying the same or dissapearing since going off drugs.
Would I Ever go back on Drugs?
I am not ruling that possibility out, but for now I am happy and feeling healthy off of drugs. There is still a lot of great research going on and new promising drug therapies but obviously my guard is up so it will have to be a pretty convincing study for me to go back on.
How do I treat my MS naturally?
I do not think there is one treatment for all MS patients which is why I do individual nutritional consultations with all of my clients (do not only work with MS patients). However, Dr. Ashton Embry has done amazing work and has had very successful results with his dietary and supplemental reccomendations for MS patients. My diet is similar to his reccomendations that can be found at direct-ms.org. If you or someone you know is interested in an individual nutritional consultation or to have me to a nutrition seminar you can contact me at crystal_phillips85@hotmail.com or 403.200.0494.
Cheers to a healthy future!
Crystal Phillips