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Old 06-02-2010, 09:57 AM #11
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MRSD I soooo agree with this being an environmental disease. I just ate a piece of toast with 30 ingredients!

Plastics....pesticides.....flame retardants....teflon.....

Boy did we ever cr@p in our own nest!

Now how do we teach ourselves to live without this stuff? It is hard to believe I lived in the pre-plastic world for the early part of my life. How did we do it? Can it be done again??
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Old 06-02-2010, 10:02 AM #12
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Originally Posted by kpRN View Post
I have an appointment at Cleveland Clinic on 6/14. Do you remember who you saw there? I am not hearing good things about CC and wonder if I should cancel my appointment. I am seeing Dr. Shook. Greatly appreciate any help you can give. I did try Cymbalta but we are in the process of weaning off after 2 months. Made me have tremors and constipation (bad). Glad you are finding some relief with the supplements.
Cyclops-

I saw Dr. Morton. And all my tests passed I think except the QSART(will have to recheck) and the nerve sample.

They would be good for getting your diagnosis, but when you find out, I would come back here and post and then get help. I am a firm beleiver that these drugs will only make your problems worse unless you need them for excruciating disc pain or similar. Mrs. D and the others here are your best doctors.
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Old 06-02-2010, 05:05 PM #13
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Sorry Kprn I got your handle mixed with Cycleclops.

About the environmental toxins, notwithstanding the brilliant acts of corporations like BP and Monsanto is the Food Industry which is doing its share. If anyone ever gets the chance and wants to see how all our food is created and what's in it, I recommend the movie "Food, Inc". It essentially shows how our food supply is controlled by 4 Big Companies that basically dictate what goes in our food. And they are wreaking havoc with our health.

High Fructose Corn Syrup, MSG, Genetically Modified Soybean and corn oil, antibiotics, growth hormone, pesticides, irradiated meat and hydrogenated trans fat are the elements in regular non-organic food that is adding to our toxic load. These are neurotoxic, carcinogenic, free-radical creating substances that you will find in a lot of our food. In fact after watching that movie I made some big changes.

I think our food here in the U.S. is a justification in and of itself of the crucial need for antioxidant supplementation and the need for migration to organic(not always easy). Then again if our FDA did its job and really regulated things(hard to do when they are run by these companies; can we say corrupt -YES) maybe we wouldn't have to.
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Old 06-02-2010, 06:16 PM #14
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Very interesting Mrs.D. You always have the best info. I had never read that.

Are you thinking that maybe alot of these neuro diseaese/disorders stem from similar pharms as well like Prevacid and Cipro?

One deduction I have made from these "situations" is that if you keep people ignorant, you ensure your market and can keep (slow-bleed) your customers.
Yes, I do think your drugs may have contributed. I am going to make the next post on the SubForum, for fluoroquinolone antibiotics.. probably this week or weekend.
http://neurotalk.psychcentral.com/thread122889.html
That thread will also have Statins for lowering cholesterol.
But the subject is so large, I've been reviewing my links for the fluoroquinolone post that will be coming soon.

Long term Prevacid may block B12 absorption like other acid lowering drugs. The Cipro is more neurotoxic...and affects the nerves in a different way.

The subject "fluoroquinolone" or "Cipro" or "Levaquin" as search keywords here will bring up many many posts! So take a look that way too.
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Old 06-02-2010, 06:54 PM #15
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Yeah I was also on Levaquin for 30 days 2.5 years ago. I had a spyder bite 4 years ago that they put me on Cipro for.
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Old 06-02-2010, 07:27 PM #16
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Default You are right Mrs D... no treatment comes without consequences!

And, it is truly sad that most here have NOT memorized the bad s/e's possible on their meds lists! It's hard work to take meds and supplements so they don't cancel each other out..... one this hour? Another the next? It can become for many an all DAY EXPERIENCE! Now, I take only WHAT I NEED! No more? No less.
As for anti-biotics? They do have their place and their time.. the problem is that so many practicing docs aren't keeping up to date about the s/e's that can happen from long term anti-b's. I'm definitely a victim of this, I believe, but there's no 'clinical proof' of the cause/effect aspects. Ergo I'm a sunk boat from that perspective. BUT IT DID cause things to 'happen' to me causing a big downhill neuropathy spiral down almost thru the drain.
Being 'treated for one thing'? Can help that one thing, but it could create havoc on the rest of your systems! We are NOT automobiles, we are very complex animals with inter-relations among our various systems that are truly marvelous and amazing. But mess up one? You get problems. We w/neuropathies have had our 'systems' thrown out of sync. Thus we must be super careful about anything we eat, drink, take in, etc. to the point of almost being paralysed at times about what to do!
There are many here with a huge pool of knowledge! About their experiences and about how they've dealt with them! USE and read this knowledge and get smarter!
I also agree w/Mrs D about BEING YOUR OWN ADVOCATE! Actually, YOU are a star! Not so 'n so! YOU've gone thru more, pain and loss and the like! And, you can become a star for your area by talking to your area, state and national representatives about who you are and why you're there and why you care!

BTW? The neuropathy group you mentioned is NOT qualified as stellar in the various 'giving' evaluations. They don't post their annual reports nor do they distribute them. Take a look at the board? Then watch it...it never changes. I used to evaluate non-profits? A non-changing board, means a non-evolving organiztion. Enuf said.

REMEMBER: WE ARE THE STARS! And we deserve to be! - j
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Old 06-02-2010, 08:38 PM #17
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I also agree w/Mrs D about BEING YOUR OWN ADVOCATE! Actually, YOU are a star! Not so 'n so! YOU've gone thru more, pain and loss and the like! And, you can become a star for your area by talking to your area, state and national representatives about who you are and why you're there and why you care!

BTW? The neuropathy group you mentioned is NOT qualified as stellar in the various 'giving' evaluations. They don't post their annual reports nor do they distribute them. Take a look at the board? Then watch it...it never changes. I used to evaluate non-profits? A non-changing board, means a non-evolving organiztion. Enuf said.

REMEMBER: WE ARE THE STARS! And we deserve to be! - j[/QUOTE]

Dalhek,

I totally agree. This was my concern. That organization is a sham and a poor representation for people with Neuropathy. We need an organization that can't be bought by DRUG COMPANIES and that is proactive. This goes for many other diseases and disorders. Our medical establishment is running people in reverse.

Neuropathy is not the only disease whose resolution is stagnating and treatment faulty. There are many more. If one were to go to Europe and get treated, they would be in awe of what real problem-resolution medicine can do. We have symptom prolongation- medicine here in the States and it is beyond time for a change.

People are being lied to, hurt and degenerating faster and faster, just for a measly buck. I never paid it any mind until it hit me in the face. But its simple to see how its engineered really crooked and its pretty sickening. I think the best thing we can do for others besides helping them find releif is waking them up to this sobering reality. Hopefully, then they will wake others and we will have a solid foundation.

Change will not happen until people realize that the system is broken. The path toward resolution of this disease and others will not happen until we tell them its broke and ask them to fix it. Real change will occur when all members of these communities are awake and confront their doctors, congressmen and senators about this ineffective establishment. Only when people in numbers stand together and demand this change will the system will be forced to evolve and truly help.

The worst thing we could do is act alone. I think soon we all need to come together and stand as one at some point. One issue at a time, one peice at a time, until this system is forced to legitimize and act in favor of the people it was designed to.

We need a true group advocate in our corner and the Neuropathy Association may not be it Funny thing is I blindly gave them $100 when I found the site because I thought they wanted to help. I guess we can all be deceived.

Sorry for the rant but this has been building for a long time. I started this thread looking to see if others saw this problem, and this confirmed it. This forum and its contributors are awesome. I am now just thinking of other ideas and means to really take action and make this right. This issue is important!
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