Hey Sandy,

Her doctor told me to get them off this site, because they are completely natural, no additives...and she can keep track of what she is taking through their service. The prices aren't too bad, I check them out last night. So I am going to go with the initial purchase and then take the container with me to the store to see how they size up with a lower cost supplement.

Thanks all for all of the great replies, I really appreciate all of the help.

love Sandy

Hi Sandy.

I have been taking Nucyenta for four months now. My PM prescribed it for pain. It a class 2 narcotic and is very similar to Morphine. It comes in several dosages. Mine is 50mg three ties a day. I live in MD and have had a horrible time finding a pharmacy that carries it. My hometown pharm. took three months to finally get it for me. He said it is very new and outragesly (sp?) expensive, so not too many prescribe it. I had to pay for it with my primary insurance (not w/c) and my copay was $40.00 for 90 pills! Well worth it for me, as I cannot tolerate narcotics, but I am not constantly vomiting with this. Hope it works for her.
Kim

Hi Kim,

It was easy to get here, we live on an Island, which is by downtown Tampa, and we have a private pharmacy...they had it in stock which I was surprised. But, it hasn't helped the pain for her. Let's see, our copay was $60.00 for 60 pills. Unbelievable...Lindsay has been going to PT three days per week. We found a wonderful PT lady in St. Petersburg, right over the bridge, she also has RSD. She is great with Lindsay, doesn't push her but she is able to manipulate her shoulders and the other day, was able to get rid of her migraine. We also found a PT for the physical part that is close to home. He is very well versed with RSD. She is doing pretty well. Still in a lot of pain, but seems to be having more of a life. I hope things get better for you too.

Sandy

Hi Sandy.... I have a few comments about your supplement list.

1) While tumeric is useful...and new studies are coming in at a fast rate concerning its active ingredient: curcumin--
You should know that curcumin is not well absorbed in the GI tract. The studies use enhanced solubility tricks so the antioxidant will get to the rest of the body and brain. Plan old unenhanced tumeric will stay in the bowel mostly and would be useful for inflammation locally there, like Crohn's disease etc.
This thread explains at length about which brands are enhanced and why and how:

http://neurotalk.psychcentral.com/sh...light=curcumin

2) the same holds true for CoQ-10. Enhanced absorption is preferred or you will not get your money's worth and little effect will result.

3) Another antioxidant which is very helpful is grapeseed extract. Some people here use that and have used it in the past. 300mg/day
Vicc who is no long with us, claimed this was very effective for him.

4) I'd suggest you get blood tests for B12 and Vit D. People with chronic pain have been shown to be low in D...especially.
This medical video explains it:
http://www.youtube.com/watch?v=TQ-qekFoi-o
Vit D3 costs pennies a day to fix. So does the B12, the blood level result should be 400 or above. If you are lower than that, don't accept "normal", as lab ranges are antequated in the US. Many of us at PN here use methylcobalamin for our nerve issues. It also is pennies a day.

There are several online stores with very low prices for quality brand name supplements. Some like enhanced CoQ-10 and curcumin are going to cost a significant price.
You can PM me anytime for any questions. I'd be leary of any distributor who tells you not to research your supplements! Just think about that.

Examples of good online places:
iherb.com
vitacost
and some like swanson.
some of the supplements are available at Puritan's.
(enhanced curcumin is not). I have purchased grapeseed there at reasonable prices.

Enhanced high quality Curcumin and CoQ-10 are available at
Epic4health.com

My goals in helping people online are 1) effectiveness, 2) safety, 3) quality -- but not in that order...all 3 are equally important. You can have all 3 at affordable costs.

Hi Mrs. D...

This list was from my daughter PM. She wants her on them. She never mentioned bloodwork. I am leary about supplements. The PM actually gave me the web site to order these. Thank you for your advice. I will talk with her doc about blood work. Thanks for all of the web sites as well.


Sandy

The tests for B12 and Vit D are standard now in most medical offices. If she is not low then she need not take them. They would be the smallest cost of all on your list. The Vit D is very important. Please watch that medical video from Univ. Cal San Diego Medical School, to see why.

Testing is always preferable. Some other vitamins and minerals are not easily tested for...or the results are not easily interpreted. For example, magnesium tests are only really valid for very very low, or very very high levels...in between is rather murky, and doesn't always reflect need which may be substantial.

I have posted many times, some studies from Britain on Vit C preventing RSD in people with wrist fractures and foot trauma.
If you search it here they will come up. So Vit C remains something to consider. It is an antioxidant too.

I just wanted to share something I just learned. Apparently, it is more important than most folks/internists have understood that patients with high cholesterol taking statins - like me - as well as beta blockers and apparently some other blood pressure meds be on CoQ-10 supplements, where:

Coenzyme Q10 shares a common biosynthetic pathway with cholesterol. The synthesis of an intermediary precursor of coenzyme Q10, mevalonate, is inhibited by some beta blockers, blood pressure-lowering medication,[20] and statins, a class of cholesterol-lowering drugs.[21][22] Statins can reduce serum levels of coenzyme Q10 by up to 40%.[23] Some research suggests the logical option of supplementation with coenzyme Q10 as a routine adjunct to any treatment that may reduce endogenous production of coenzyme Q10, based on a balance of likely benefit against very small risk.[24][25]

Notes
20. Kishi T, Watanabe T, Folkers K (1977). "Bioenergetics in clinical medicine XV. Inhibition of coenzyme Q10-enzymes by clinically used adrenergic blockers of beta-receptors". Res Commun Chem Pathol Pharmacol 17 (1): 157–64. PMID 17892.
21. The Synthesis of Cholesterol http://www.cholesterol-and-health.co...olesterol.html
22. Mortensen, S.A.; et al. (1997). "Dose-Related Decrease of Coenzyme Q10 During Treatment with HMG-CoA Reductase Inhibitors". Molecular Aspects of Medicine 18 Suppl.: 137–144. PMID 9266515.
23. Ghirlanda G, Oradei A, Manto A, Lippa S, Uccioli L, Caputo S, Greco A, Littarru G (1993). "Evidence of plasma CoQ10-lowering effect by HMG-CoA reductase inhibitors: a double-blind, placebo-controlled study". J Clin Pharmacol 33 (3): 226–9. PMID 8463436.
24. Sarter B (2002). "Coenzyme Q10 and cardiovascular disease: a review". J Cardiovasc Nurs 16 (4): 9–20. doi:10.1002/cncr.11242 . . . . PMID 12597259.
25. Thibault A, Samid D, Tompkins A, Figg W, Cooper M, Hohl R, Trepel J, Liang B, Patronas N, Venzon D, Reed E, Myers C (1996). "Phase I study of lovastatin, an inhibitor of the mevalonate pathway, in patients with cancer". Clin Cancer Res 2 (3): 483–91. PMID 9816194

Coenzyme Q10, Wikipedia, the free encyclopedia (last modifoed April 16, 2010) http://en.wikipedia.org/wiki/Coenzym...armacokinetics

That said, patients on these drugs woud be well advised to their doctors before starting CoQ-10, and that is what I am planning to do, where a pharmacist recently gave me what I understood to be the opposite advice: that CoQ-10 could defeat or deminish the effectiveness of the statin.

When speaking to your physician, you may want to reference the following abstract:

Effects of CoQ10 supplementation on plasma lipoprotein lipid, CoQ10 and liver and muscle enzyme levels in hypercholesterolemic patients treated with atorvastatin: a randomized double-blind study, Mabuchi H, Nohara A, Kobayashi J, et al, Atherosclerosis 2007 Dec;195(2):e182-9. Epub 2007 Aug 6.

Abstract
The long-term efficacy and safety of HMG-CoA reductase inhibitors (statins) have been established in large multicenter trials. Inhibition of this enzyme, however, results in decreased synthesis of cholesterol and other products downstream of mevalonate, such as CoQ10 or dolichol. This was a randomized double-blind, placebo-controlled study that examined the effects of CoQ10 and placebo in hypercholesterolemic patients treated by atorvastatin. Eligible patients were given 10mg/day of atorvastatin for 16 weeks. Half of the patients (n=24) were supplemented with 100mg/day of CoQ10, while the other half (n=25) were given the placebo. Serum LDL-C levels in the CoQ10 group decreased by 43%, while in the placebo group by 49%. The HDL-C increment was more striking in the CoQ10 group than in the placebo group. All patients showed definite reductions of plasma CoQ10 levels in the placebo group, by 42%. All patients supplemented with CoQ10 showed striking increases in plasma CoQ10 by 127%. In conclusion atorvastatin definitely decreased plasma CoQ10 levels and supplementation with CoQ10 increased their levels. These changes in plasma CoQ10 levels showed no relation to the changes in serum AST, ALT and CK levels. Further studies are needed, however, for the evaluation of CoQ10 supplementation in statin therapy.

PMID: 17681347 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17681347

Mike

Thanks Mike, I appreciate your input. Lindsay does have low blood pressure, before the Ketamine infusions she was taking midodrine to raise her bloodpressure. After the Ketamine infusions her bloodpressure stabilized. It is amazing how much we can learn from you and also Mrs. D. Thank you both again.

Sandy

Mrs. D,

I will definitely watch the video. I will make sure I have her blood checked before starting these meds. You wonder why if you know this, why the doctors just think it is alright to just give these without testing the levels. Especially in children. Thank you for caring so much.

Sandy

Doctors typically do not have much nutritional knowledge. They only get what drug salesmen give them about drugs, and in school it is not taught. Continuing Ed for them typically does not have it.

Some "professional" line supplements, target doctors. Thorne is one but there are others. There is an online one...the name eludes me, but when the person buys them, and tells the doctors' name there is a rebate for the doctor. All of these tend to be pricey.

I've had extensive experience with both drugs and supplements, so I have a different point of view...and I am not out to make money off my advice. I scan the literature and search many things out of curiosity and for my self and family and find the newest supplements, of quality etc. Right now I am trying the new Krill oil to replace my standard fish oil, and it is very nice. I've used SAMe for my osteoarthritis for over 10 yrs now... and it has kept me mobile and away from opiates.

The information about B12 is in a sticky on our PN board.
There are several Vit D threads here on Vitamin forum.
And I have Magnesium and B6, and zinc on there too. All the medical papers to support use of them for various medical problems are on those threads. It is a database I have been gathering over the years.
You are free to PM me anytime for any details and questions that come up for you.

One thing is that I have not seen really good mixtures out there for people made by these companies. I take most of my supplements as separate entities and adjust my doses of them accordingly. Some supplement places have complex mixes that are more of a shotgun approach rather than specific in approach.

It IS unusual for your doctor to suggest them, and it is always possible he has a specific point of view. I just wanted you to know, he may just be in it for the money. If the CoQ-10 and tumeric are not bio enhanced...that will tell you alot about his knowledge base! So when you get them please PM me and share the ingredients.