Progression

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Jaded » Mon Jan 23, 2006 2:53 am

Harry, Ian, gwa

When I was first diagnosed I found the Swank website, and immediately ordered and read the book.

http://swankmsdiet.org/index.php/diet/about2/

Dr Swank was a neurologist (if my memory serves me right) and saw many MS patients who he advised to change their diets - mainly to cut out saturated fats and reduce things like caffeine which makes inflammation worse. He started this way back in the 1950's and in his book he records that those who stuck to the diet did not get worse in terms of diability.

There are people on the message boards of that website who were Dr Swank's patients and take no drugs and are only on the diet - and have been ok for years.

I decided to try the diet myself and have been on it for almost a year now. It does take time to work but the first thing I noticed was that all that twitching stopped. I can't say I am better - I still have disability in my leg, but what's to lose apart from a few pounds? That was my thinking. And I had the disability to start with anyway.

And this backs up the statins reports. Perhaps that'll be their next moneyspinner.



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Postby remnants » Mon Jan 23, 2006 9:12 am

Hello Jaded,

I also read about and tried the Swank diet with some positive results, but found it extremely difficult to maintain. I later learned of LDN and have since stopped the Swank diet, but maintain as many of his pricipals as possible in an all around healthy diet. I've also gone as organic as I can, even soap & shampoos. I figure if my immune system has to deal with this disease, I would reduce the remaining load as much as possibe. I don't know how much this helps the MS, but I do feel better. I would definitely return to the Swank diet before I would consider the CRAB drugs.

Harry,

I couldn't agree with you more on the CRABs and the companies that produce them. I have never taken one and don't believe I ever will. I doubt that I will even consider Tysabri.

When I saw one neuro and showed him info. on LDN, his response was, "Well, that's all anecdotal, those people would've seen relief anyhow because that's how long (3 weeks) those symptoms last." When I say the same thing back at him in response to the CRABs, he looks at me like I am insane.

I can't recall which of the CRABs they were pushing on me at the time, either Rebif or Betaseron, but the promotional literature included accumulation of airline miles. I couldn't believe that I could accumulate air travel miles if I used their drugs! Hmmm... wonder if I would've ever felt well enough to travel if I took their drugs.

Regards,
Cindy
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Postby HarryZ » Mon Jan 23, 2006 6:13 pm

Cindy,

I couldn't agree with you more on the CRABs and the companies that produce them. I have never taken one and don't believe I ever will. I doubt that I will even consider Tysabri.


A wise decision!

When I saw one neuro and showed him info. on LDN, his response was, "Well, that's all anecdotal, those people would've seen relief anyhow because that's how long (3 weeks) those symptoms last." When I say the same thing back at him in response to the CRABs, he looks at me like I am insane.


Don't you just like the double standard that these docs follow!! Happens all the time.

I can't recall which of the CRABs they were pushing on me at the time, either Rebif or Betaseron, but the promotional literature included accumulation of airline miles. I couldn't believe that I could accumulate air travel miles if I used their drugs! Hmmm... wonder if I would've ever felt well enough to travel if I took their drugs.


Like I've said many times before...the marketing departments of the CRAB makers are very slick. How else can you continually get people to take an expensive drug that may help them minimally and do nothing to alter the course of their disease??!!!

Take care.

Harry
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Postby Jaded » Tue Jan 24, 2006 8:16 am

Hi Cindy

I am on LDN as well as swank, and the abx too. I can't live with this thing so I'm always going to be trying something until I find what works for me!

Harry, I can understand how people get to use the CRABS - another relapse and anyone would be prepared to try somthing that half-worked. I do totally agree with you though, and I think we should be given the facts and figures before we commit ourselves.

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Postby mrhodes40 » Tue Jan 24, 2006 10:16 am

If you can get pst your doctor's belief- mne believes inthese meds. I told him I did not think the copaxone was helping me and that in fact though I have been on it since release, those years were not as good as the earlier years. I have more progreesion in the cop years. he said Well, we probsbly just got you on it in time, just as you were starting to progress. God only know how you'd be without it! Studies esp the long terms one show that people do much better over time on it as those lessened lesions mean as time goes on more healthy tissue...

And the hell of it is htere is no way at all to evaluate if this is truth or not. that he absolutely believes it is fact. I'm not so sure after having spent close to 200,000 of my lifetime medical limit of 1,000,000 total on medical care on copaxone. No one knows how I'd be if I'd not taken copaxone, not even me
marie
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MRI results

Postby Katman » Fri Jan 27, 2006 2:07 pm

The nurse at my doctor's called and read the part for me about my MRI: "stable, no progression, WOW" I have not read the whole report which is probably more in depth than WOW. For foundation, I remind all that I am PPMS for 10 years with a whirlwind progression to 6.7 last June and am now 2.5. I began abx 17 months ago and (except during Flagyl) now walk/RUN 1 mile each day. I stopped using Avonex Dec. 8, 2005 after 75 shots because it no longer helped at all. This action resulted in my neurologist's disowning me. He was the same one who was not at all interested in why I was better. A local radiologist has offered to compare all 5 films with my husband (a pediatrician) and me present. If you like, I will post the results of this event when it happens.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Re: MRI results

Postby HarryZ » Fri Jan 27, 2006 5:50 pm

Rica,

I stopped using Avonex Dec. 8, 2005 after 75 shots because it no longer helped at all. This action resulted in my neurologist's disowning me. He was the same one who was not at all interested in why I was better. A local radiologist has offered to compare all 5 films with my husband (a pediatrician) and me present. If you like, I will post the results of this event when it happens.

Rica


Another classic example of the neuro trying to treat the disease and not the patient!!! If the desired results aren't reached with the medication he wants you to use, then to hell with the patient and how he/she feels! How very sad.

Harry
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Postby Jaded » Sat Jan 28, 2006 4:45 am

Rica

That's great news. Thank you for sharing it with us.

The findings of your radiologist will be very interesting - please keep us informed.

And good luck.

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MRI readings

Postby Katman » Sat Jan 28, 2006 9:28 am

We just went to town to the "traveling MRI" (on wheels) which comes to our town 1x a week to request my 4 older films. They should be here on Thur. Next will be to find when THAT traveling radiologist who offered to participate in this adventure will be back.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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