Questin for Anecdote

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Questin for Anecdote

Postby Chris55 » Wed Nov 08, 2006 7:21 am

Hey--I have a "curiosty" question for you which may have already been addressed and I have simply missed it! In your posts, you close with:

"Started the Wheldon regime in August 2003, due to aggressive SPMS. Moved to intermittent therapy after one year. Oct 2006 still take this, now two weeks every three months. EDSS was about 7, now no more than 2."

Your current EDSS score of "2"...was this determined by your "MS" doctor? Does s/he know you are on an antibiotic regimen? If so, what comments do you get?

Thanks!
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Postby SarahLonglands » Wed Nov 08, 2006 3:16 pm

Hello Chris, briefly I have been asked this before and answered it, but things are sometimes very hard to find. By my MS doctor I presume you mean my neurologist. He certainly knows and doesn't approve. He thinks the antibiotics are dangerous and untested. That is, I guess, why I haven't seen him since I started. My current EDSS rating was assessed by my husband, who is as able as any other physician to do so, probably more since he studied neuropathology at Oxford before deciding to move specialities to microbiology. Since it is he who told my GP what to prescribe for me, I guess he is my new MS doctor.

Sarah :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Chris55 » Thu Nov 09, 2006 6:59 am

My reason for asking...my daughter is the one currently on a "natural" antibiotic treatment (doctor found strep infection). If she were to tell her "MS specialist", he would probably refuse to treat her. (Ahhhh--the arrogance!) He will only prescribe Avonex unless asked to prescribe something else. He will NOT prescribe Copaxone, period!

He has been pushing my daughter to go on Tysabri--she consistently has refused. Just learned his practice was one of the "test" sites. Excuse me but...bastard!

Needless to say, I have NO use for the medical industry when it comes to this disease. I have learned SO MUCH in my constant reading and am, quite frankly, appalled at how much they do not know (or do not want to know). My biggest concern with "conventional" treatment, however, was the amount of drugs they had my daughter on. If her nose tickled, they threw yet another drug at her. And your doctor is concerned about antibiotics--how funny!

If my daughter's natural treatment fails--and right now she is doing incredibly GREAT--she will consider your regimen.

You have my full support and we expect continual updates from you! My prayers for all of you and thanks for answering my question! Chris
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Postby Chris55 » Thu Nov 09, 2006 7:01 am

P.S. Also, I am assuming one does not need an EDSS assessment to know how well they are--or are not--doing!
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Postby viper498 » Thu Nov 09, 2006 7:34 am

Chris55,

It sounds like your daughters Neurologist is having is yacht payment taken care of by BiogenIdec. Just my perception.

Brock
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Postby SarahLonglands » Thu Nov 09, 2006 7:43 am

Chris, my neuro's behaviour would be absolutely hilarious except that he works on one side of a courtyard, David works on the other. In these last three years he must have diagnosed countless people with either SPMS or PPMS, but he has suggested to none of them that they might care to see David. They are just told that nothing can be done and they should just allow the disease to progress. He doesn't have to believe in anything, he doesn't have to say any more than that there is a doctor just over the way who might be able to offer you some help, but no, nothing. He wouldn't even look at my new scans because the chief radiologist ordered them, not him. That to my mind is wicked.

On a brighter note, he complained to the Medical Director, but the Medical Director is totally behind David. Increasingly more local GPs are also referring people, but more to the point these people, who had previously just been thrown on the scrapheap, are improving.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Chris55 » Thu Nov 09, 2006 10:35 am

Brock--I did ask my daughter to ask her neuro if he has any stock in Biogen!!! Seriously, I do not think that this is an inappropriate question at all!!

My daughter actually let her neuro's practice "hold it" about a month ago. She just really, really went off and let them hold it. The lady she was talking to, who very respectfully listened, whispered under her breath when Suzy got through: "You have to do what is best for you!"

These docs ARE NOT GOD!! Why would they oppose something that will not hurt you and just might help? This treatment my daughter is on came from knowing someone with incurable Hodgin's Disease. When the young man's mother asked his doctor about "trying" this new treatment, to the doc's credit he said: "Go for it! There is nothing I can do for your son." When the son returned a year later completely Hodgin's free his doctor said: "You should be dead! This is unbelieveable!" My hat off to him!

We all know most doctors are NOT going to encourage "stepping outside the box"--just not going to happen. And I can kind of understand that. BUT, when something is CLEARLY making a sick person better--or even well--then why can't they acknowledge that like the doc above? That is the only part I do not understand.

I--we--all know why they will forever shun anything "natural"--takes too much money out of pockets. And yet, I "cure" an incurable disease with natural--not because I want to but because there is NOTHING to treat it! I have used a lot of natural products for ailments and THEY REALLY DO WORK!!! It ain't in my head!

With MS, I believe the most important step for anyone newly diagnosed is to recognize their "future" depends entirely on them--not a doctor! They MUST research, research, research...put the options out there and "choose carefully".

I have been reading/following the Wheldon protocol ever since I came to this site. (It almost mirrors the treatment for chronic lyme disease, which I had been studying before.) Unfortunately, I was not in a position to decide my daughter's life. She was strictly "doctor" oriented. Her decision to try something unorthodox came out of nowhere!

I am still being cautious about her treatment but she is anything but! She is adamant about the fact that she does NOT have an autoimmune disease!

We will all support each other through this tough journey! Peace all!
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