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Old 05-18-2013, 01:35 PM #1
kemokimo kemokimo is offline
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Default Another New Member Needing Advice

Back in 2008 when I was diagnosed with peripheral neuropathy with no explanation of why or how I got it, I decided to go to the Mayo Clinic in Rochester. After an incredible amount of testing and wasted time, I received the same diagnosis. And no cure.

The burning pain in my right foot is worse than in my left, but somehow neither is as bad as when I first got it. But it's still plenty bad. I can't walk anymore than 20 minutes and I can't stand more than 15. In addition, I have spinal stenosis(arthritis in the spine). I am also developing joint problems from being on my back so much due to both the above problems. I am almost 70 and in reasonably good health otherwise.

I am anxious to start on some of the supplements mentioned on this forum to see if I can get some relief. I have taken 40 mg each of statin and reflux medication for over 3 years. In addition, I take Caltrate 600mg + D and glucosamine chondroitin w/MSM. I used to take omega 3 fish oil soft gels from Omapure but stopped when I read the results of a major study that determined that only oil consummed directly from fish flesh could help avoid heart attacks.

I recently read thru several posts about supplements on this site but based on a previously read local newspaper article, I had already started taking 600mg of alpha lipoic acid(1/day). I have also received a bottle benfotiamine (250mg) which I haven't started yet. I am now thinking that maybe I should stop the acid and go to a physiatrist. He could check my level of B12, D, etc. and, hopefully, get me started on on the right track.

What do you think? Is there anything I'm missing. Is there any harm in continuing the AL acid or starting the benfotiamine. Can they be taken at the same time? Is there any combination of drugs, supplements etc. that should not be taken at the same time? By the way, I took the fish oil daily for at least 3 years and it never had any effect on the feet.
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Old 05-18-2013, 02:44 PM #2
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Quote:
Originally Posted by kemokimo View Post
Back in 2008 when I was diagnosed with peripheral neuropathy with no explanation of why or how I got it, I decided to go to the Mayo Clinic in Rochester. After an incredible amount of testing and wasted time, I received the same diagnosis. And no cure.

The burning pain in my right foot is worse than in my left, but somehow neither is as bad as when I first got it. But it's still plenty bad. I can't walk anymore than 20 minutes and I can't stand more than 15. In addition, I have spinal stenosis(arthritis in the spine). I am also developing joint problems from being on my back so much due to both the above problems. I am almost 70 and in reasonably good health otherwise.

I am anxious to start on some of the supplements mentioned on this forum to see if I can get some relief. I have taken 40 mg each of statin and reflux medication for over 3 years. In addition, I take Caltrate 600mg + D and glucosamine chondroitin w/MSM. I used to take omega 3 fish oil soft gels from Omapure but stopped when I read the results of a major study that determined that only oil consummed directly from fish flesh could help avoid heart attacks.

I recently read thru several posts about supplements on this site but based on a previously read local newspaper article, I had already started taking 600mg of alpha lipoic acid(1/day). I have also received a bottle benfotiamine (250mg) which I haven't started yet. I am now thinking that maybe I should stop the acid and go to a physiatrist. He could check my level of B12, D, etc. and, hopefully, get me started on on the right track.

What do you think? Is there anything I'm missing. Is there any harm in continuing the AL acid or starting the benfotiamine. Can they be taken at the same time? Is there any combination of drugs, supplements etc. that should not be taken at the same time? By the way, I took the fish oil daily for at least 3 years and it never had any effect on the feet.
Welcome to NeuroTalk:

I see some glaring problems right off the bat....

1) reflux medication depletes many nutrients that are dependant
on acid in the stomach to get absorbed:
B12
folate
calcium
magnesium
iron
zinc
some trace minerals.

2) 40 mg of any statin is alot...and very damaging. Every day we get new information on how statins hurt nerves. Just this week, an article in Science Daily showing in photos nerve damage:
http://www.sciencedaily.com/releases...0510150143.htm

Anyone taking a statin has to supplement with CoQ-10. This vital nutrient our livers make, is blocked by statins so that the mitochondria in our muscles and nerves cannot make energy anymore. So right off the bat you need to do this first!
There are new versions that have be solubilized chemically to be absorbed better. Qunol is one and affordable at Costco and WalMart. Another is Q-Gel...available on line. If you use this type 100mg a day is enough for most people. If you choose an oil gel cap type with soybean oil in it, you'll need at least 300mg a day.

Next up in priority is magnesium. You need this because of your reflux drug. Most Americans (up to 70%) do not eat foods that supply this essential mineral. Taking that drug besides, makes you very vulnerable and very potentially low.
Magnesium can be had orally with a good supplement called SlowMag... one twice a day (available affordably at WalMart), and also can be used topically or with epsom salt soaks...to your feet. Topically there is a nice new lotion made by Morton, called Epsom lotion, and it is so far very new and on Amazon ($7.98), or at WalMart (again)... for $5.98. I try to find the most affordable quality things for people here and for myself too.
WalMart has been a savior of sorts for me in this regard.

Get your B12 tested at the doctor's and get the numbers for the result. Then supplement if you need it (400pg/ml or lower).

You can think about lipoic acid and benfotiamine too, but these others should be first because of your history and lifestyle.

To get the best results here, there is no substitute for reading the Subforum above, the B12 thread, and other posters questions. You will find yourself already on this forum, thru the words of others.
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Old 05-18-2013, 02:52 PM #3
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Default Hello Kemokimo

Welcome to Neuro Talk. I have PN too. I went to a physiatrist, and she got me on suppliments. I seem to be better one year later. Take B12 shots, and that was one of the first things she checked on. She also treats effectively for pain. I hope you can find this kind of doctor, I think it is a great idea. I wish you all the best. ginnie
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Old 05-19-2013, 01:26 PM #4
kemokimo kemokimo is offline
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Mrs D and Ginnie, I am so grateful to you for responding so quickly to my post and for providing such high caliber input on my problem. I have started taking Qunol and Slow Mag. The Qunol has soybean oil in it so I will be taking 300mg/day. I also bought the Epsom lotion and it was only slightly effective but every little bit helps. I had my level of B12 tested by my internist at the end of November of 2012. It was 725 pg/mL or at the high end of a range of 200-1100 pg/mL. Do I need a more recent reading?

Should I hold off on the lipoic acid and the benfotiamine or take both of them along with the other supplements? Also I am having some difficulty finding a physiatrist in Houston via the internet that specializes in reducing pain. Most seem to specialize in other areas. Maybe I should just pick one associated with a good medical school and not worry about his specialty or just go to my internist. What do you think?
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"Thanks for this!" says:
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Old 05-19-2013, 01:50 PM #5
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Lightbulb

Hold off on the others for a month or two. Did you get Vit D measured as well? Do you know that result?

Your B12 looks good. You may hold off on that too unless you want to try 1000mcg a day of methyl type on an empty stomach.
That would be your choice.
The testing does not separate out the methyl from other forms, so you could have inactive B12 that is showing up on the test. By taking 1000mcg of the active methyl form and seeing improvement that would tell you that you probably are not methylating properly. Since B12 is not toxic, this would be an inexpensive test. After 3 mons you should have some answer either way.

Qunol may have some soybean oil in it, but it is not like the 100% soy liquicaps that preceded it. Qunol uses a solubilizing technology to improve absorption.

http://www.qunol.com/
So you probably don't need the 300mg a day.

Don't use the mag lotion on the bottoms of the feet, the skin is too thick there for absorption. Only do the tops and ankles.

As far as using statins, the tide is really turning on this subject.
Since Lipitor went generic, pro-statin news is less than ever. In fact today I was sent a new link to a story in Nature magazine suggesting that the statin theory is changing:
http://www.nature.com/news/cholester...lustre-1.12509

And research is ongoing at MIT... by Stephanie Seneff PhD on cholesterol and how crucial it is for health:
http://people.csail.mit.edu/seneff/

There are some very compelling interviews on YouTube with her and Dr. Mercola where she explains her research. The bottom line from that series should you watch them (several parts to it all) is that the only benefits to statins show up in the first 2 yrs on them, and then they actually do serious damage to the body.
This is part one:
http://www.youtube.com/watch?v=5QUChSlUEH0
Her research is mostly on cholesterol sulfate.
you can link to the rest of the series from this first part.

Also Dr. Kendrick has a short video illustrating how cholesterol is not really associated with heart disease at all:
This is based on a study from WHO:
http://www.youtube.com/watch?v=i8SSCNaaDcE

As Big Pharma loses their patents on statins, we will see more and more of the truth about these drugs, IMO.
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Old 05-19-2013, 02:21 PM #6
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This information about statins is seriously depressing. I've been taking it for the better part of 30 years with the last 5 or so on 40mg. Is it that it doesn't do what it's purported to do or that it does things that were never contemplated that are harmful? Guess I'll just have to read the research to find out.
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Old 05-19-2013, 02:41 PM #7
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Lightbulb

Historically statins first came out by Merck company, to address an uncommon genetic defect where people have huge elevated cholesterols (familial hypercholesteremia). I only know of one person in fact...in my 40+ yrs working who had this... a level of 800! Once the drug was on the market they decided to target others. So studies were done, and the first one by Dr. Keyes the data was altered by removing results that didn't fit their hypothesis. (this is explained and the data shown in the book The Cholesterol Myths). Merck also knew about losing CoQ-10... and they initially thought :
1) people won't take this if they know it damages CoQ-10 synthesis etc sooooo we won't tell doctors or patients.
2) they patented a tablet with both Lovastatin (Mevacor) + CoQ-10 in it. The patent can still be accessed online in fact. But the solubility factor of CoQ-10 could not be solved quickly so they dropped the combo product....and kept the secret. This information came out about 8-10 yrs ago, but many doctors still do not know or understand even what CoQ-10 is for!

As the complementary aspect of medicine grew and people became more interested in things and the internet grew, all this came out. Now you can find information about CoQ-10 loss and statins if you look for it. But most doctors don't look for it and hence unless a patient tells them---NOTHING is shared.

Big Pharma tends to sit on negative or disturbing data, and only release positive things --which can often have been even ghost written, fraudent, or data manipulated. Merck for example even published a fake medical journal in Australia, with fake papers to promote their drugs!

So being in that occupation, seeing everyone on drugs everyday, I became very upset, and determined to share the truth and facts not supplied to doctors. (once a drug goes off patent, salespeople do not advise doctors anymore so they are then totally out of the loop in all ways).

The bottom line is that the "goals" for statins, that everyone now believes, were fabricated and created by Big Pharma to sell their drugs...which were blockbusters and made BILLIONS for them.
This is my statin thread here...

http://neurotalk.psychcentral.com/post665830-5.html
I have many other posts scattered on NeuroTalk here with more links...if you search "statins" you'll find them.

Not everyone gets PN from statins. But a study in the Netherlands claims many more do than reported. Basically statins damage the cells' ability to repair damage. This happens in the brain, like the memory damage. This was found when MS patients were given high dose statins in the hopes of staving off MS damage, and in reality this caused them FURTHER damage so they don't do this treatment anymore.

Doctors do not know the other side of this subject, so I provide the information gathered by reputable independent researchers so people reading here can study it and decide for themselves.

If you had cholesterols really high --over 300-350 or more, then yes you may need some help. But you don't need 40mg IMO.
You could get by with much less, according to Dr. Jay Cohen MD who I link to very often.
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Old 05-19-2013, 03:53 PM #8
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By the way, my D3 and D2, 25-OH levels at the end of November 2012 were 42 and <4, respectively. An endnote said the reference ranges have not been established.

So can you boil it down on the 40mg of Lipitor? I not only have the PN problem I am also experiencing significant memory loss. Other than cut my dosage in half with a pill cutter (my cardiologist told me as recently as a year or so ago that I should stay on the 40mg dosage) and take the CoQ10, what else should I do? Is damage already done irreversable?
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Old 05-19-2013, 04:08 PM #9
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I would think it boils down to your initial cholesterol levels, and if you have already had a cardiovascular event before starting Lipitor.

If you are borderline, do not have blocked arteries already, you are not in a bad place to start with.

40mg of Lipitor is a significant amount. Some patients see lower LDLs on only 5mg of Lipitor a day!

Here are studies on geriatric patients:

Dr. Beatrice Golomb MD has done the most work with geriatric patients on statins:

http://www.kpbs.org/news/2012/jun/12...owering-stati/

https://www.statineffects.com/info/

http://www.theheart.org/article/1412605.do

You can search Dr. Golomb and find research articles going back several years. She specializes in older patients, who are seriously impacted with side effects from statins, and who may do better without them.
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Old 05-19-2013, 05:22 PM #10
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Default Hello Kemokimo

You can go on line and research doctors through the American medical association. Also keep posting here, and someone may know of a physiatrist near your area. I would keep looking, and ask each one you talk to by phone, what they specialize in. My physiatrist treats pain first. Reduction of pain happened even when weaning off morphine! (I have cervical issues too). She does provide enough relief. The other thing was the suppliments. This doc. makes an attempt to really try to heal the whole person. I sure hope you can find this kind of doctor. When my fear of the pain went away, and I knew there was help, my anxiety went down, and so did the pain.
Your B12 sounds pretty good. I take 1,000 by injection weeky as mine was lower. I do take alpha lipoic acid, and CoQ10 as well. I sure hope that you get the right doctor, that can lower your pain. Take care of yourself, be good to yourself. We will be here for support. ginnie
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