No More Supplements

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Postby adec » Wed Apr 09, 2008 5:53 am

I just think it's sad that so much anecdotal evidence found here, and elsewhere, is discarded based on limited clinical studies. The Medwatch reporting process is broken, and the real science often falls in-between the scientific method and Wall Street. Maybe simple vitamin D3 isn't sexy enough, and needs better marketing.

If anyone's curious, statins are an analog/ue to vitamin D3 in the sense that they appear molecularly similar. Taking statins increases vitamin D3 receptors, and therefore vitamin D3 indirectly. Discontinuing statins means vitamin D3 levels drop without supplemental vitamin D3. Both vitamin D3 and statins are similar in that they both lower LDL cholesterol. However while vitamin D3 can increase immunity, statins create immune deficiencies. The effect could change based on the lithophilic or hydrophilic nature of the statin drug.

This happens somewhat in whole amino acid families, where they can be substituted for one another and still maintain identical activity. This is mainly due to the index of their hydropathic nature. Hydrophobicity is what determines how these aminos interact with other molecules, enzymes and receptors etc. This would allow an equal substitution between aminos like arginine, glutamate, and lysine for instance. And it might make the most difference in how each is able to penetrate the mitochondria.

That's perhaps why the more hydrophobic lysine is so often paired with the more hydrophilic vitamin C, to better penetrate the mitochondria. This is the same principle behind making carnitine more effective when paired with the much more hydrophobic arginine, or acetyl-l-carnitine-arginate or Argino Carn. Lysine and Arginine are the more hydrophobic aminos on the index, and compliment each other very well.

In the same way, cAMP (cyclic adenosine monophosphate) is an analogue which convinces the body into accepting it as NGF (nerve growth factor) CAMP directly increases NGF signaling. Elevating cAMP, and therefore NGF, is a huge step in regenerating nerves. One of the best known ways to elevate cAMP is through Forskolin supplementation. Although, dissolving glial scars is the first step, though perhaps chondrotinase ABC and lithium orotate. Lithium especially helps to increase WNT signalling. The WNT protein in itself is a growth factor increased upon injury. This would allow nerves to grow past the initial scar, and yes, partially regenerate nerves in humans. This beneficial response could furthered with an increase in fluctuating stem cells.

Adult stem cell proliferatation activity could be gained from the synergistic effect of substances like vitamin D3, green tea extract, blueberry extract, carnosine (or histadine and beta-alanine,) resveratrol, chondrotin sulfate, DHA, blue-green algae, and brown seaweed extract (fucoidan.) Of course pluripotent stem cells have the potential to differentiate into any cell in the human body. Other scientifically proven ways to regenerate nerves is through high dose vitamin B12 and inosine therapy etc. This could go beyond helping someone with just neuropathy, but potentially help reverse some of the most serious neurodegenerative diseases... many curiously caused by a weakened immune response.

I had already proven nerve regeneration a possiblity in my mom's own case of retinal artery occlusion (eye stroke.) She had already fully recovered from statins, but one particularly sinister problem lurked. This eventually left her completely blind (central + peripheral) in one eye after damage went unnoticed for two weeks. Yet within six months she was able to read the first 5 lines on the eye chart, with a blind spot in the middle.

I also formulated eye drops based in acetyl-l-carnosine, msm, sodium ascorbate, and other factors. In her good eye vision increased to 20/25 from 20/40. We were able to eventually unblock the retinal artery, using nattozimes, lumbrokinase, and serrapeptase, an impossiblity within itself. But regenerating the retinal nerve is considered the even bigger medical impossibility. This is when one particular glaucoma specialist started to see some appreciable credence based on ocular scans. And then two straight specialists nearly lept up from excitement, based solely on the improvements, no exaggeration. Too little too late.

There's more to the story (both good and bad) too long and involved for the forum. But getting medical science to believe in the possibility of optic nerve regeneration was the hardest part. Medical science refuses to stray outside of the accepted norm, and always wants to be right.... to a fault. I only care about knowing the truth; even if this means constatly questioning myself, and stepping outside the already established norm. The hardest part is just believing in your own intuition, beyond what all-mighty medical science demands of us.

Perhaps that's why so many cling to CoQ10 as the one true panacea. CoQ10 is the only somewhat studied and medically sanctioned treatment for statin induced damage, and keeps patients within their comfort zone. I so wanted CoQ10 to be the one answer, make mine and my mom's life easier; yet continuing to believe this might have killed her. She was definitely in the top percentile of statins sufferers on the forum. I honestly believed in my gut she'd be dead within the year. Those mini-strokes don't just go away because CoQ10 suddently starts recirculating.

I now know I could have prevented my mom's eye stroke and eventual blindness. This is what has kept me motivated to incessantly read and absorb every/any piece of imaginable scientific literature, to find the root causes and unifying theory. And now today she has reversed every single condition (and even reversed the aging process) except for partial blindness in her left eye, with a now reduced diagnosis of some remaining retinal nerve apathy. What a complicated mess we fallible humans are trying to unravel here. Sorry for rambling.
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Postby Allen1 » Wed Apr 09, 2008 6:00 am

gotts1936,

at 71 and being damaged by statins I am concerned that you would starve your body of nutrients even more by thinking of going on a fast. I think your idea is to purge all the rubbish out of your body and try to bring it back into balance, but our bodies are not working properly anymore and you could just as easily make yourself more incapable of meeting your bodies needs by starving it.

Seriously though, I would get a doctor to check that you are physically fit enough to fast for 24 to 36 hours before attempting it or at least let him/her know that you intend to do it. The fast may do you the world of good but it could also be disastrous especially due to the statin damage that you already have making you more deficient in q10 and everything else.

I can see from your posts that you are listening to what people are saying and that you are aware of the ups and downs that this crap have caused us all, we have all tried to find what works for ourselves and what does work for some may not do so for others.

Sometimes it will take over a month to see or feel a benefit from a supplement and with Carnitine it made my legs feel a lot worse for a while before feeling less achy and a bit stronger than they were (they would get tired a lot quicker beforehand)

Good luck with your experiment and give your body time to stabilise between additions or changes in what you take that way you will be able to notice any differences that may happen good or bad.

All the best,

Allen :)
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Postby adec » Wed Apr 09, 2008 6:03 am

So again.... if someone says it's impossible to regenerate nerves (or other organs and cellular structures) and remove glycation, dead scar tissue, fibrinogen, calcification, arterial plaque, blood clots etc., they are dead wrong, and growing more so by the day. And I have the underutilized science to prove it.
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Postby adec » Wed Apr 09, 2008 6:08 am

Yeah, I agree with Allen. Fasting probably isn't the right approach. Maybe what you're looking for is chelation therapy. Or alpha-lipoic-acid and IP6 supplementation could be an even easier approach to cleanse your system of toxins. And of course, getting back to the healing of the liver approach, it's pretty vital. Good luck to Gotts in whatever he chooses.
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Postby carbuffmom » Wed Apr 09, 2008 8:12 am

adec:

I am always glad to read about your research. I saw your mention of lithium orotate. There is an Italian study about the use of lithium carbonate to slow the progression of ALS. I have been reading of improvements in ALS patients who are trying it on the patientslikeme website. It has to be prescribed by an MD and blood levels must be checked weekly in the beginning. My neuro has offered to prescribe it for me and I am seriously considering it although I am leery of the side effects.

Do you have any thoughts about this?

Thanks, Deb
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statin drugs

Postby gotts1936 » Wed Apr 09, 2008 9:20 am

Carbuffmom, sorry to get in between your interest in Lithium Oratate and any responses you might get, but I want to thank adec and Allen1 for their responses to my concerns and present course of action because I have very high respect for their knowledge on statin drugs, etc.

Gotts
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Postby Allen1 » Wed Apr 09, 2008 10:14 am

Hi there Gotts,

it is a real shame that we all have to find out what works for us as individuals, if everyone had the same symptoms from statins then finding a cure or relief for the problems would be a lot easier but as you know that we all have a very varied selection and severity of symptoms.

Adec and Ray Holder were the ones that advised L-Carnitine and Q-10 and and also using a fair amount of vitamin C till I could afford the supplements. That advice was sound for my needs and probably most of us statin victims, but there are folk like yourself who have symptoms that seem to need a different approach to lessen those problems that statins have caused to your bodies.

I know I still have some awful days (memory and tiredness) even though I now take the supplements, whereas before I took the supplements I was a complete waste of space nearly all of the time, so for me it is a great improvement taking them.

Good luck with your experimenting but if you start to go downhill too fast then please stop for a while before continuing or stopping completely to give your body a chance to recover or get used to what you are using.

All the best,

Allen.



Hi there adec,

I read your post this morning and it is good to see that your mom's eyesight has greatly improved. There is a vast amount of information in your post and I will have to read it again to take it in properly, today is one of those fuzzy memory days but my memory is a hell of a lot better than a year ago :)

All the best,

Allen :-)
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statin drugs

Postby gotts1936 » Wed Apr 09, 2008 12:49 pm

Just a quick update. Today is day four without any supplements . I have been taking a brisk 30 minute walk five days a week for seven months. Today, I noticed that my walking gait was a little off and I had to concentrate on my legs to continue the walk. In one way, I guess, I am blessed because my problems are limited to my leg muscles.
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Postby Biologist » Wed Apr 09, 2008 1:41 pm

adec (and adec only unless you have too much time on your hands today :) ),

I misread your previous sentence in this thread where you wrote:

"I'm just waiting for even one forum member (with these
huge intolerances) to concentrate on the liver/kidney/pancreas
aspect, so everyone can possibly further benefit from their
anecdotal success."
--adex

Obviously you used "anecdotal" exactly correct. My bad !

Here's the psychoanalysis (i.e., the brain science behind the malfunction) of my blunder. I had just read the following from you that preceded that statement:

"I would try vitamin D3, as the analog of statins, to increase immunity."
--adec

I believed, at the time, that was a very obvious incorrect usage of the term and that what you really meant to say was that Vitamin D3 performed more "as an opposite" to statins. Therefore I may have been somewhat "predisposed" to misread the sentence where you used the term "anecdotal." I was not reading as carefully or as forgivingly at that point. Sorry.

Today, you write the following:

"If anyone's curious, statins are an analogue to vitamin D3
in the sense that they appear molecularly similar."

I agree that they appear similar. But you may have a more important point, which I will be giving more thought to. You actually make "an argument" that they are, in a respect, functionally analogous (i.e., "analogues") in some respects. Intriguing thought. For this reason, I also agree with your rationale. Again, my bad.

Here's perhaps an original etiology of my blunder. Previously, on another subject, you had written:

"5-HTP and tryptophan have both been proven to increase
serotonin in the brain. Both 5-HTP and its metabolite tryptophan
have the same capacity to allow some serotonin to remain in the
blood and tissue."

(Found here: http://www.spacedoc.net/board/viewtopic ... olite#5599 )

The use of the term metabolite appeared wrong, but I decided to let it go. Generally we would consider 5-HTP to be a metabolite of tryptophan. Tryptophan is metabolized into 5-HTP as opposed to the other way around. Small point perhaps, but pointing it out could help refine your usage of terminology in the future. But again, if that is the case, I blew it this time. As for your post there, I thought it was good. Your comments on Ambien are certainly correct. And the long text I recommended, where you state that Dr. Bob's concern were likely overstated, is probably also correct.

Anyway, carry on. Thanks for the info.

Hey, Deb, give some thought to an update on your situation before long.

Gotts, one perhaps unexpected outcome of such a "diet" (i.e., fasting) is a temporary increase in human growth hormone secretion over the time period. That part of the proposition cannot hurt.

Biologist
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Postby Darrell » Wed Apr 09, 2008 7:02 pm

If you need carnitine supplementation due to statin toxicity (and some of us clearly do), then when going WITHOUT carnitine supplementation:

Fasting = Low Blood Sugar = Muscles Relying on a Damaged Fat Metabolism System = Potential Muscle Mitochondrial Damage.

In such a case, fasting may may lead to further muscle damage and it may be permanent.

I lost a lot of weight last year (by plan), but I was careful to stay on carnitine while reducing my calories.
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Postby bucho » Thu Apr 10, 2008 9:18 pm

adec:
I am also interested in your thoughts and ideas for nerve regeneration. However, I'm time-constrained these days (somewhat back in the fight!) so I've become one of those annoying, passive types who just want to take a pill to solve the problem. Well, that and exercise -- as a typical statin irony, I who love to solve problems actively through things like exercise, had that activity subverted by zocor for several years, but obstinately did it anyway, and chose to live with the consequential damage and pain until eventually it culminated in a rhabdo adventure one night in the ER.

Now how's THAT for a digression!? Anyway, if you reach the point where your findings can be distilled into a simple recipe (i.e., take X milligrams of Y every day) I would be very grateful.

Many thanks for your persistent quest for statin recovery solutions!
/b
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test

Postby georgecornea » Sun Apr 13, 2008 8:18 am

test reply
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statin drugs

Postby gotts1936 » Thu Apr 17, 2008 3:43 pm

Test reply: I was going to go without any supplements for two weeks, but after 10 days my legs were so weak I decided to return to using the supplements. Those of you who told me not to do so were right. Thanks. I now am sure I have Chronic Neuromuscular Degeneration triggered by statin drug use which created collateral damage to my mevalonate pathway which is responsible for maintaining healthy muscular cell life. This mevalonate pathway damage can be permanent and/or progressive. This damage can produce other neurodegenerative diseases like ALS, MS, MD, Frontal lobe dementia and Alzheimer's disease over time.
Dr. Graveline has mentioned a number of supplements which may help to decrease leg pain, but not repair nerves or muscle loss. I will be on them for a couple of weeks and get back to you all.
Gotts
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Postby Allen1 » Thu Apr 17, 2008 5:34 pm

Hi there Gotts,

Sorry to hear the experiment went poorly, it was one of those things that we all have a need to try for ourselves just to be sure. The damage as you have mentioned that statins have caused and maybe will still cause are terrible, you must take each problem as they come and hopefully the problems wont progress any or much further.

At the moment we are all stuck for an answer to getting our lives back to some sort of normality and all we can do till a solution comes along is to try what seems to help some people and with a bit of luck it may also help the rest of us.

Good luck with your supplements and I wish you a positive outcome with them and a cessation from further damage.

All the very best,

Allen :-)
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Dr Golomb's supplement recommendation

Postby pgrimm » Fri Apr 18, 2008 7:52 am

I am positing the recommendations for supplements we got from Dr. Golomb this week. See them under the discussion of her name.
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