Neuropathy 99% Gone After three and a Half Years - Update

A forum to discuss personal experiences of Neuropathy associated with statin drug use.

Neuropathy 99% Gone After three and a Half Years - Update

Postby Nancy W » Sun Jan 20, 2013 2:58 pm

Hey fellow sojourners in the nasty world of statin-related issues...

I have been gone for quite some time...first to Virginia to pack our son's things off to Japan, where he is forward deployed in the Navy for three years flying F18 Super Hornets off the carrier...then I went to London for five weeks to care for our four grandkids while their parents went to Latvia hoping to adopt a little girl there. It didn't work out. So they came back and I came home with bronchitis, which I am just barely over 7 weeks later! But I am better, so that is good. But I haven't been on spacedoc.com in a long time...

I notice there are more and more articles online about the problems with statins, as well as more and more articles about why we need cholesterol to function. That is good news...hope it continues, so more people aren't victimized by this ridiculous industry.

Anyway, an update...My biggest (and second) misadventure with statins was one month into taking Red Yeast Rice (in 2009), per my cardiologist's advice, I developed global peripheral neuropathy, legs, arms, trunk, face. As well as profound fatigue with an activity tolerance of 10 minutes. I developed very painful tendinosis at the insertion of my tendons on the bones in the next year.

42 months later, I can say that I am 99% over it all, save one little spot on one big toe, that sometimes is numb. All the shooting pain, the fatigue, and the tendon issues are gone. Before the bronchitis slowed me down in late November 2012, I was (fast) walking up to 8 miles a day in London, hauling kids on scooters, pushing kids in strollers, carrying all the groceries, etc. (no car)...and I was walking so fast some of the time that I was getting a runner's high. They have a three story row house and I constantly ran up and down the stairs. I am beginning to catch back up now, working out in the pool for 60-90 minutes a day, going on the treadmill, beginning to lift weights, doing interval training. The bronchitis definitely slowed me down, but I have confidence that I will get back...I have also lost 40 pounds in the last year, on purpose, by eating a Paleo diet, avoiding ALL processed food and keeping track of my intake. I want to lose 20 more this year.

I attribute my recovery, first and foremost, to this site, then to my excellent naturopath (who I drive 3 hours one-way to see), to well-informed supplementation, to organic, real food and pasture raised meats, as well as wild-caught fish. And TIME.

I still take CoQ10 (Jarrow QH Ubiquinol-Kaneka Preparation) twice daily with fish oil and/or coconut oil, since C0Q10 is fat-soluble. I try and get my antioxidants and vitamins through nutrition, but through this winter season, I take Vit. C. I take 8000 of Vit D3, year round...we live in Washington, and don't get all that much sun. I take Magnesium if my muscles get sore from exercise. But I have actually cut back a lot from that first 18 months, when my naturopath had me on big doses of a lot of things. My new motto is food is medicine, medicine is food.

I will also have to say that if any medical doctor starts in with me about cholesterol, I get FEISTY! I have so appreciated all the articles and books that I have read about here...I am well informed now, and I am very opinionated on this subject. My usual docs know not to talk drugs with me. They are, however, very interested in what I have accomplished with supplementation, great nutrition and exercise. Not that one of them ever broached the subject of food, supplementation or exercise with me...and I had been overweight for fifty years! That's American medicine for you...

I have learned one other big lesson from all of this, one I will never forget...live every day to the fullest...and never give up.

Happy New Year!
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Postby lars999 » Mon Jan 21, 2013 10:43 am

Hi Nancy!

Great to hear that your statin-caused neuropathy has abated! And that things in general are much improved.

I too have had a reversal of dibilitating neuropathy in right foot and lower leg, which started and progressed while I was on Lipitor. It is most recent of my Lipitor associated medical/physical problems to reverse.

Now that my total cholesterol and "bad" cholesterol are back to their normal, "high" concentrations, I feel much better, greatly reduced "brain fog", much improved stamina and general health.

I continue my program of information contraindicating ALL statins, listing ALL STATINS as medications I am strongly allergic to. I continue to find that nearly all doctors, that do NOT prescribe statins, are either supportive or open to negative information about them. Basically, get away from GPs and cardiologists and there seems to be little real support for statins. Could it be that, since they have nothing to gain monetarily, that they don't push statins?

I too enjoy seeing the increasing number of studies and pubs questioning the value of statins and highlighting their many negative effects, especially for us older folks (am am 73). Hopefully, we are seeing another demise of a once highly touted therapy, one that could demonstrate a measurable decrease of some supposedly "causive" factor, BUT that was found to have little or no preventative effect on "target disease", longevity, etc., while exposing patients to serious adverse effects and costs. Remember the annual chest X-rays and lung cancer?

Thanks again for good newes!
Lars
lars999
 
Posts: 331
Joined: Mon Sep 20, 2010 10:14 am

Ongoing neuropathic issues...6 years out...including falls.

Postby Nancy W » Mon Jul 06, 2015 2:55 pm

Hi all...

Well, it has been two years since my optimistic post about being 99% over the neuropathy.

I still have neuropathy. I realized, when having a "hot stone massage" a couple of years ago that I could not feel the heat of the stones from the knees down. That is in addition to the fact that I never got rid of my cold, painful, numb toes.

In the year after I turned 65 (2014), I had four falls which my body/brain made no attempt to stop. I fell hard, with no protective balance reactions. As a physical therapist, I know that falls in my age group are serious...and can presage all sorts of issues going forward, not the least of which could be dementia. For those of you who don't know this, your ability to "catch" your balance comes from a high-speed reflex which has its receptors for balance loss in the ankle joint. This was discovered as amputee veterans returned from the Iraq war. Research showed that intact sensation in the ankles/feet is critical for balance. I was wearing shoes with thick soles...clogs, running and walking shoes. I got rid of them all and started wearing "minimal" shoes that have almost no padding, so that I get maximum sensory input, "feeling" what is under me. This has worked, as I have not fallen since changing shoes. But I will say that my very sensitive, painful toes and feet aren't excited about non-cushy shoes, from a comfort standpoint.

My feet are cold and painful, especially noticeable at night, when they wake me up. I have increasingly had cramping in my feet, lower legs over the last two years. Taking a chelated version of Magnesium Glycinate at bedtime definitely helps. I also take epsom salt baths or use body lotion with epsom salts in it to help with the cramping. If I forget, I don't sleep or am awakened with cramps/spasms/shooting pains.

The other thing is that, beginning about one year ago, I started having fasciculations (twitches), first in the muscles along my spine, now randomly in my body, internally in my belly, in my legs, feet and sometimes arms and hands. The magnesium helps, but does not eliminate the twitching. Fasciculations can indicate early denervation of muscles. This has been worrisome, as I have read here of others' "ALS-like" weakness.

I have tried to keep up walking regularly, out with our dog several times a day. My tolerance for climbing hills has been challenging...but I had a goal to do this one trail on Mt. Rainier, where 37 years ago, I hiked up with friends and family to scatter my first husband's ashes from a ridge, after he died of melanoma. Last week I did it. My (second) husband was a saint, stopping with me as I needed to stop every 20 feet to rest and breathe, while climbing up 1,400 feet in 1.7 miles. Coming down was even harder and the last quarter mile, I was shaking all over from weakness...I was very close to not making it...I am persistent, that is for sure...

The circulation in my hands and feet is "Raynaud-like" in character. This has been true for the entire six years.

Because sleep is so critical for every living being, I have worked hard to improve my sleep...completely dark room, cool, no "screens" within 2 hours of bedtime, no exposure to blue light (*http://www.flux.com) from computers. Keeping all EMF away from the bedroom. But still I was awakened multiple times each night. Dr. G. suggested I try cannabis...have been doing 10 mg at bedtime for almost one month. My sleep is better, for sure, but the symptoms are there if I don't take it, and are there during the day, when I choose not to use cannabis. We live in Washington State, where it is legal to purchase and use Cannabis. It is really expensive, and I am working on jumping through the necessary hoops to get a prescription for medical marijuana, hopefully in the near future, so it becomes relatively more affordable.

I have also been having some short term (hippocampus) memory issues, as well as anxiety.

I remain suspicious about statins...worried that these brain symptoms are possibly related...

I am starting the Dolichol Study...hopeful that more will be learned for all of us! Hoping for relief.

Nancy
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Re: Neuropathy 99% Gone After three and a Half Years - Updat

Postby David Staup » Tue Jul 07, 2015 8:04 am

you really should try the low dose Benadryl.....

I got my neighbor to try it on his 93 year old mother who had been bed ridden due to complications from diabetes.

neuropathy and open wounds were the major problems, within 2 months the wounds were mostly healed, she was able to get out of bed, and stop her insulin injections.....then she had a heart attack and bypass surgery...she was fully recovered in three months. Her doctor expected a 12 to 15 month recovery...he called the treatment a miracle.

He is now my doctor ..only because I need a prescription for thyroid meds, you can have your doctor contact him for verification if you must have confirmation of what I have been saying for years....
or not
suit yourself

Dr. Charles Brooks Smith, MD in Granbury, Tx ....
David Staup
 
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Location: granbury, texas

Re: Neuropathy 99% Gone After three and a Half Years - Updat

Postby Nancy W » Sun Oct 25, 2015 7:17 pm

Hi David...Sorry to be so long in getting back to you. Thanks for the suggestion. My symptoms have continued to slowly progress. I am working on getting the neurology consult, per Dr. G's suggestion. I am in the dolichol study...second phase begins soon.

How much Benadryl? Do you have a post on this site about it?

Nancy
Nancy W
 
Posts: 139
Joined: Thu Sep 03, 2009 11:22 pm
Location: Bonney Lake, Washington

Re: Neuropathy 99% Gone After three and a Half Years - Updat

Postby David Staup » Sun Oct 25, 2015 9:53 pm

Hi Nancy,

How much and how often, perhaps the best way for most people is to take 1 mg per 30 lbs of body weight first thing in the AM, at lunch time, dinner time, and twice that dose at bed time.

I have posted my observations here:

viewtopic.php?f=1&t=1961
don't miss the updates on Page 3
I really should update again as I have continued to make improvements and have learned a bit about dosing from others but that's for another time.

There is some feedback from others here:
viewtopic.php?f=1&t=2915

I really should update this too....


David
David Staup
 
Posts: 546
Joined: Wed Nov 28, 2007 1:13 pm
Location: granbury, texas

Re: Neuropathy 99% Gone After three and a Half Years - Updat

Postby David Staup » Sun Oct 25, 2015 9:56 pm

One more thing

use the children's liquid... it is 2.5 mg per ml
David Staup
 
Posts: 546
Joined: Wed Nov 28, 2007 1:13 pm
Location: granbury, texas


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