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 Alternative medications 
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Joined: Sun Feb 25, 2007 3:34 pm
Posts: 29
Post Alternative medications
Hello all and thanks so much for being here! My father was taken off everything including heart meds, blood thinners, prostate, gout and cholesterol meds by his (former) internist during his last stay in the hospital against my wishes. His reasoning was that he thought Dad may be having reactions to some of them which were exacerbating his LBD symptoms. His new internist is hesitant to put him back on anything without the old records which have not yet been released. Meanwhile, his new neurologist has agreed to put him back on Miralax and Aricept and suggested CoQ10, vitamin E, fish oil, grapeseed extract, and curcumin(which is in the spice Tumeric) when I asked about a holistic approach. I was just wondering if anyone is using this with their LO's and have you seen a difference? Dad hasn't started any of these yet, and the neurologist said studies weren't conclusive on whether they work. At this point, I am more interested in what caregivers have noticed than what "studies" show!


Mon Feb 26, 2007 7:06 pm
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Hi Julie,
Welcome to the LBD forums, the orginal internist may have been correct in the fact that some meds were making the LBD progression ,I think the Aricept is a good drug of choice, I do know of some people who are using CoQ10 with success and others see no difference with it, as to the other natural drugs I don't ever remember reading anything on any of them, I am sure Eric will step in here with his comments and lets hope he can give his thoughts! :)


Mon Feb 26, 2007 8:26 pm
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Rehi Julie,
I just found this and thought it would be of interest to you!

Study Suggests Coenzyme Q10 Slows Functional Decline in Parkinson's Disease
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For release: Monday, October 14, 2002

Results of the first placebo-controlled, multicenter clinical trial of the compound coenzyme Q10 suggest that it can slow disease progression in patients with early-stage Parkinson's disease (PD). While the results must be confirmed in a larger study, they provide hope that this compound may ultimately provide a new way of treating PD.

The phase II study, led by Clifford Shults, M.D., of the University of California, San Diego (UCSD) School of Medicine, looked at a total of 80 PD patients at 10 centers across the country to determine if coenzyme Q10 is safe and if it can slow the rate of functional decline. The study was funded by the National Institute of Neurological Disorders and Stroke (NINDS) and appears in the October 15, 2002, issue of the Archives of Neurology . 1

"This trial suggested that coenzyme Q10 can slow the rate of deterioration in Parkinson's disease," says Dr. Shults. "However, before the compound is used widely, the results need to be confirmed in a larger group of patients."

PD is a chronic, progressive neurological disease that affects about 500,000 people in the United States. It results from the loss of brain cells that produce the neurotransmitter dopamine and causes tremor, stiffness of the limbs and trunk, impaired balance and coordination, and slowing of movements. Patients also sometimes develop other symptoms, including difficulty swallowing, disturbed sleep, and emotional problems. PD usually affects people over the age of 50, but it can affect younger people as well. While levodopa and other drugs can ease the symptoms of PD, none of the current treatments has been shown to slow the course of the disease.

The investigators believe coenzyme Q10 works by improving the function of mitochondria, the "powerhouses" that produce energy in cells. Coenzyme Q10 is an important link in the chain of chemical reactions that produces this energy. It also is a potent antioxidant - a chemical that "mops up" potentially harmful chemicals generated during normal metabolism. Previous studies carried out by Dr. Shults, Richard Haas, M.D., of UCSD and Flint Beal, M.D., of Cornell University have shown that coenzyme Q10 levels in mitochondria from PD patients are reduced and that mitochondrial function in these patients is impaired. Animal studies have shown that coenzyme Q10 can protect the area of the brain that is damaged in PD. Dr. Shults and colleagues also conducted a pilot study with PD patients which showed that consumption of up to 800 mg/day of coenzyme Q10 was well-tolerated and significantly increased the level of coenzyme Q10 in the blood.

All of the patients who took part in the new study had the three primary features of PD - tremor, stiffness, and slowed movements - and had been diagnosed with the disease within 5 years of the time they were enrolled. After an initial screening and baseline blood tests, the patients were randomly divided into four groups. Three of the groups received coenzyme Q10 at three different doses (300 mg/day, 600 mg/day, and 1,200 mg/day), along with vitamin E, while a fourth group received a matching placebo that contained vitamin E alone. Each participant received a clinical evaluation 1 month later and every 4 months for a total of 16 months or until the investigator determined that the patient needed treatment with levodopa. None of the participants or the study investigators knew which treatment each patient had received until the study ended.

The investigators found that most side effects of coenzyme Q10 were mild, and none of the patients required a reduction of their dose. The percentage of people receiving coenzyme Q10 who reported side effects was not significantly different from that of the placebo group. During the study period, the group that received the largest dose of coenzyme Q10 (1,200 mg/day) had 44 percent less decline in mental function, motor (movement) function, and ability to carry out activities of daily living, such as feeding or dressing themselves. The greatest effect was on activities of daily living. The groups that received 300 mg/day and 600 mg/day developed slightly less disability than the placebo group, but the effects were less than those in the group that received the highest dosage of coenzyme Q10 .

The groups that received coenzyme Q10 also had significant increases in the level of coenzyme Q10 in their blood and a significant increase in energy-producing reactions within their mitochondria.

The results of this study suggest that doses of coenzyme Q10 as high as 1,200 mg/day are safe and may be more effective than lower doses, says Dr. Shults. The findings are consistent with those of a recently published study of patients with early Huntington's disease - another degenerative neurological disorder - that showed slightly less functional decline in groups that received 600 mg/day of coenzyme Q10 .

The new study also used an efficient phase II clinical trial design - developed by biostatistician David Oakes, Ph.D., of the University of Rochester, and other study investigators - which should be useful for testing other drugs that might slow the progression of PD, says Dr. Shults. The design allowed the researchers to study the effects of three doses plus a placebo in less than 3 years, and to obtain useful data about the compound's effectiveness.

Dr. Shults and his colleagues strongly caution patients against taking coenzyme Q10 until a larger, definitive trial can be conducted. Because coenzyme Q10 is classified as a dietary supplement, it is not regulated by the U.S. Food and Drug Administration. The versions of the supplement sold in stores may differ, they may not contain potentially beneficial amounts of the compound, and taking coenzyme Q10 over a number of years may be costly, says Dr. Shults. In addition, the current study included only a small number of patients, and the findings may not extend to people in later stages of PD or to those who are at risk but have not been diagnosed with the disorder, he notes. Finally, if many people begin taking coenzyme Q10 because of these early results, it might make it impossible for investigators to find enough patients to carry out definitive studies of the compound's effectiveness and the proper dosages, since patients must not be taking any treatments in order to be considered for enrollment in a definitive trial.

The investigators are now planning a larger clinical trial that will examine the effects of 1,200 mg/day of coenzyme Q10 , and possibly a higher dose as well, in a larger number of patients.

The NINDS is a component of the National Institutes of Health in Bethesda, Maryland, and is the nation's primary supporter of biomedical research on the brain and nervous system.

1 Shults CW, Oakes D, Kieburtz K, Beal F, Haas R, Plumb S, Juncos JL, Nutt J, Shoulson I, Carter J, Kompoliti K, Perlmutter JS, Reich S, Stern M, Watts RL, Kurlan R, Molho E, Harrison M, Lew M, and the Parkinson Study Group. "Effects of coenzyme Q10 in early Parkinson disease: evidence of slowing of the functional decline." Archives of Neurology , October 2002, Vol. 59, No. 10, pp. 1541-1550.

Reporters: for more information, contact Natalie Frazin or Margo Warren, 301-496-5751.


Mon Feb 26, 2007 8:51 pm

Joined: Sun Feb 25, 2007 3:34 pm
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Thank you for replying! That article on the COQ10 seems promising, so I'm off to the health food store tomorrow for that and the other supplements. I just want to check with the cardiologistfirst to make sure it's okay to give these with his heart issues. I know it's a shot in the dark, but at this point I'm about willing to try anything.


Mon Feb 26, 2007 9:37 pm
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Oh, Irene; you just know I couldn't resist....

Julie:

I think both the former internist and the new neurologist are on the right track. I don't know what kind of blood thinners your dad was on, or for what reason, but if he was on coumadin, that might be the one thing I'd get him back on pronto. If it was just Plavix or Aggrenox or something, that's less important.

I'm torn where to start...ok, how about Vit. E and CoQ10. First off, it's safe in people with heart disease; in fact, it's an Rx treatment for congestive heart failure in other countries. The risks from CoQ10 therapy in anticoagulated patients are anecdotal and apocryphal, and are not dose-related. I don't put any stock in them.

The combo is rational - CoQ10 is a powerful antioxidant, and is essential for energy transport in the mitochondria. Mitochondrial death is considered a major part of the PD/LBD process, and CoQ10 supports mitochondrial survival. In rats given toxins that cause Parkinsonism, CoQ10 reduces the size of the lesions formed by injecting these chemicals into their brains. Thus, CoQ10 is postulated to work similarly with the toxins that enter the brain from the environment or that are formed as part of chemical reactions in the brain. Vitamin E works together to reduce ubidecaquinone (the CoQ10 you swallow) to ubiquinol (the form that sops up free radicals), and CoQ10 recharges the Vitamin E that latches on to free radicals. The five seminal studies of CoQ10 in PD all gave CoQ10 in combination with Vitamin E.

This is where it gets complicated; the study Irene mentions was extremely tantalizing when it was published. The reduction in progression mentioned was *specifically* defined as slowing the decline in activities of daily living, which are the problems most experienced by people with LBD (as opposed to straight-up PD, where the biggest problems are movement-related). Unfortunately, the followup studies haven't used this same scale to measure reduction in progression, and the followup study that is mentioned was just published in January 2007...and while it didn't state that CoQ10 was futile, it didn't prove it was useful either. This is going to take more studies - there's one recruiting right now in Progressive Supranuclear Palsy that will be more definitive, and should measure performance in ways that are more relevant to LBD patients.

The excellent news is that CoQ10 is incredibly safe; in all of these trials, the most severe adverse event attributed to CoQ10 has been heartburn, probably from the fat used to dissolve the CoQ10 to make the supplements. It's considered impossible to kill lab rats with CoQ10 short of stuffing them with it until they burst; thus, CoQ10 is considered non-toxic, even at blood levels some 13X that reached in the studies. There is absolutely no risk in taking as much CoQ10 as your loved one can swallow.

This brings us to the first problem; the studies have been done at a range of doses from 300 to 4000 mg/day. The lower doses were not considered promising. Based on the results of the 1200 mg/day dose in the paper Irene posted the release from, Dr. Shults did a dose-escalation study to 3000 mg/day. The blood levels at 3000 mg/day did not increase substantially compared to 2400 mg/day. The followup study used 2400 mg/day, along with 1200 IU of natural d-alpha-tocopherol vitamin E.

You may ask, why is this such a big deal? Well, 300 is throwing away money, 3000 is throwing away money. But 2400 mg/day is no laughing matter....the most common consumer-level supplements are 100-200 mg/capsule. The 400s I've found are huge - the size of a suppository...swallowing six a day could be a challenge. One company has a 600mg gelcap available - I haven't got samples yet, but I can only imagine. The formula used in the studies is a chewable wafer the size of a couple of quarters - think six Necco wafers a day.

Aside from bulk, there's the question of where the CoQ10 comes from. Almost all of the studies I've read have been done with fermentation-derived CoQ10 from one of the Japanese manufacturers. (They also have a US plant that uses an identical process). There is an alternative method to produce CoQ10 that may not be bioidentical. There's also the question of absorption - essentially, some forms of CoQ10 may get more into the body for every milligram swallowed. The hype seems to be outweighing the science on this at the moment, but in the meantime, I'm sticking to a CoQ10 delivered as a "solublisate" in a liqui-gel form or as a compressed powder of a solubilsate, which is what the studies have mostly used.

So, to sum up on CoQ10 - it's probably useful, it's absolutely 100% safe, and it's available OTC. Additionally, it's possible to get blood tests for CoQ10 levels - I know that Labcorp offers them. I believe the level reached in the Shults 2400/3000 study was, on average, about 7.45 micrograms/milliliter. So you can make sure that whichever CoQ10 you select, you're getting blood levels similar to that seen in the study that showed benefit.

Here's the downside; it is *breathtakingly* expensive. The cheapest way I've found to get 2400mg/day is $138/month, for four 600mg liquigels. If you need the 400s for swallowing ease, the price goes up. If you use the brand used in the studies, the price is closer to $400/month. It is not covered by insurance - however, if you get an Rx from the doctor that it is to treat a specific medical condition, you can claim the cost as an unreimbursed medical expense on US income taxes. Talk with your tax professional for details.

Jon and I went through a lot of soul-searching about this for Cal, but it came down to looking at the evidence from the stack of trials and weighing the financial implications against the reasonable belief that this does slow LBD progression. We'll save money elsewhere if there's a chance this could keep him out of a nursing home - if taking CoQ10 for 7 months keeps him out of a NH for one month, it's cost-effective. Not everyone is going to be able to make the same decisions. I would definitely not go on the theory that a little is better than none. The evidence for going whole-hog is the only evidence I've been convinced by.

Fish oil seems like a good idea, too - it's good for your heart, it's good for your brain, it's anti-inflammatory, it's cheap. The Costco version is cheap and effective, and something like 90% of the cardiologists in the practice Cal uses take it themselves. I figure that's all the evidence I need. If your LO is troubled with "fish burps", try the enteric-coated version.

Grapeseed Extract is interesting as an antioxidant, but I'm not putting a lot of faith in it - grapeseed oil has the lowest proanthocyanidin concentration of any part of the grape. If you want to go down that pathway, I'd look at sea buckthorn - same chemical, but a lot more of it.

People here and on the LBD yahoogroup are fond of alpha-lipoic acid as a fat-soluble antioxidant. Dr. Andrew Weil (integrative health guru) and Dr. Bruce Ames (biochemist who is probably the most qualified guy on the planet to talk about oxidative stress in cells) are both exceptionally enthusiastic about ALA's promise. Robin may chime in on that; I'm....not sure yet. I'd like to see some more peer-reviewed research.

Curcumin is interesting as well. It's clearly a potent antioxidant, and the early research in AD is promising. The catch with curcumin is that it modifies the metabolism of some drugs in the liver (I can't recall off the top of my head, but I think it's a p450 1A2 inhibitor), and it's frequently "spiked" with piperine to improve absorption. Piperine also modifies drug metabolism in a similar way. Proceed with caution.

One pathway you didn't mention is water-soluble antioxidants. At least one other person on here has a loved one taking a high-dose folate supplement. She takes Cerefolin NAC, Cal takes Diatx Zn. They both work to lower homocysteine levels, which are associated with inflammatory processes including AD. It's good for the heart, too. Dietary folate supplementation is linked to declining rates of colon cancer, fatal stroke and fatal heart attacks. Cheap insurance. Do *not* take high-dose folate without taking high-dose B12.

As for restarting the other stuff; the heart stuff is probably just fine in LBD...the one exception being beta blockers - ask your LOs doctor to choose a "hydrophilic" one such as atenolol rather than a lipophilic one such as metoprolol. Metoprolol is known for causing nightmares and hallucinations in the elderly. Atenolol works just as well.

Cholesterol-lowering medications of the statin class (Zocor, Lipitor, Crestor, etc) all cause reduced natural CoQ10 production, and most are associated with reports of worsened confusion in the elderly. I'm not sure how old your dad is, but the survival benefit from statins starts to taper off rapidly over age 75. You might talk about this with the cardiologist. Pravachol is less effective than other statins, but is associated with less cognitive side effects.

I can't comment on the gout and prostate meds, except that if "prostate meds" includes drugs for overactive bladder, know that these are bad news in people with LBD.

I think complementary therapies are going to prove useful; I hold out a lot of hope that CoQ10 in high doses is going to be a lot more useful for psychiatric problems in PD than the movement disorder component.

I'm working on a summary of CoQ10 research in Parkinson's-esque syndromes, but it's on the back burner at the moment. I'll post a link here when it's ready.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Mon Feb 26, 2007 11:42 pm
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An analogue of CoQ10, idebenone, that behaves like coQ10 metabolically can be obtained in powder form for around a dollar a gram on line. That would be less than half your best price with CoQ10. It is claimed that idebenone is even better than CoQ10 in not becoming an oxidant in conditions of low oxygen. It was developed by a Japanese company as a treatment for PD but proved inefficacious by itself in clinical trials.

I think that anti-oxidants like CoQ10 or idebenone should not be given in isolation. To get to the site of the oxidative damage anti-oxidants need to be small and soluble. Anti-oxidants generally work by becoming oxidized themselves. They are then in turn un-oxidized by other anti-oxidants in a chain until the unpaired electron they are handling like a hot potato is disposed of by what is usually a large insoluble protein complex imbedded in a membrane. CoQ10 is soluble in oil but not at all in water. Other anti-oxidants such as vitamin C are soluble in water but not oil. Others such as lipoic acid and melatonin are soluble in both. Both types are needed to complete the anti-oxidant chain so that oxidative damage in the water phase of the cell can be corrected by a coQ10 dependent pathway in an oil phase. CoQ10 or idbenone should therefore be supplemented with other anti-oxidants like vitamins C and E, lipoic acid, melatonin, etc.

Glutathione, a three amino acid protein, is the body's principal anti-oxidant. It is made by the body from the amino acids glutamate, cysteine and glycine. Since cysteine must be obtained from the diet and could be deficient, I would supplement it as well in the absorbable form N-acetyl-cysteine (NAC).


I just recently stumbled upon this forum while researching on behalf of a friend recently diagnosed with Huntington's disease. LBD is very similar to HD in that both involve neuronal nuclear inclusions, subsequent (likely) oxidative stress, energetic decline, and finally nerve cell death. They differ probably only in the particular protein species composing the inclusion and thus the subclass of neural tissue that is first to fail. The diagnosed U.S. population for both is about equal. HD however is entirely genetic and its primary cause, a gene defect, is well characterized and understood. People at risk can be identified decades before disease onset. Several animal models of the disease have been developed. The onset is typically in middle-age before the complications typical of old age set in. All these factors make HD a more desirable study object for scientists. It might therefore be prudent to monitor developments in HD treatment and consider their application to LBD.


Sat Jun 09, 2007 2:34 pm
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Eric and Remig.......

My husband used to take CoQ10 many years ago, but I don't remember the reason he stopped. From both of your very thorough explanations, it may have been a huge mistake for him to have stopped. With respect to his diagnosis of mild to moderate dementia, probably of the AD type, many Parkinsonian symptoms, all of which may be indicative of DLB contribution, do either of you see any contraindications if we add CoQ10 to his following med regimen?

Lopressor
Plavix
Prevacid
Florinef (steroid for Orthostatic BP)
Lasix (to reduce fluid from steroid)
Potassium Cl
Sinemet
Aricept
Vytorin (Zocor + Zetia)
Zoloft
Foltx (Folic Acid +B6 + B12)

Thanks a bunch for all your incredible knowledge.

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Marilyn


Sat Jun 09, 2007 6:56 pm
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This is in reply to the idebenone portion of the thread: I'll come back to the compatibility as a separate post so I can quote.

While idebenone is a potent antioxidant in vitro, and is currently the darling of the cosmetics industry (Elizabeth Arden got in bed with Allergan, a legitimate pharmaceutical company and the people behind Botox), it has a fraction of the patient days under study of CoQ10 in PD and PD-plus disorders.

There's two benefits to CoQ10 - one is as an oil-soluble antioxidant in general, prevent the formation of, for example, lipid peroxides (rancid fat). It has been hypothesized that various gross oxidative changes cause the declines of aging. The oxidative theory of AD, however, is pretty much blown to bits right now given how miserably the studies (including Takeda's idebenone trials) have failed.

The other benefit comes from protecting the mitochondria, the powerplants of cells. CoQ10 is produced in the body, on a pathway partially shared with cholesterol, to participate in the series of reactions that turn food into electricity. It's pretty amazing, actually. The idea is that CoQ10 acts as an important catalyst in the process, alternately donating and receiving electrons in the electron transport chain. It is seriously interesting, but it's just not germane to our discussion here. Suffice to say, cell respiration is a really interesting area of study, but we're interested here in how to treat and prevent death of some very specific cells.

Idebenone's boosters *love* to trot out the "auto oxidation in low oxygen conditions" saw about CoQ10, but they neglect to mention that idebenone itself is known to be *particularly* clever at auto-oxidation. . . Takeda themselves stated such in 1990. More recently, further research reveals:
Quote:
We have investigated the role of Complex I in superoxide radical production and found by combined use of specific inhibitors of Complex I that the one-electron donor in the Complex to oxygen is a redox center located prior to the sites where three different types of coenzyme Q (CoQ) competitors bind, to be identified with an Fe-S cluster, most probably N2, or possibly an ubisemiquinone intermediate insensitive to all the above inhibitors. Short-chain coenzyme Q analogues enhance superoxide formation, presumably by mediating electron transfer from N2 to oxygen. The clinically used CoQ analogue idebenone is particularly effective, raising doubts about its safety as a drug.


That's from: Genova, ML, "The mitochondrial production of reactive oxygen species in relation to aging and pathology", Ann N Y Acad Sci. 2004 Apr;1011:86-100. You'll notice that the phrase "auto oxidation" in peer-reviewed CoQ10 literature simply doesn't exist.

Translation: if it's not CoQ10, it's not *really* acting at the same point in the electron transport chain. Taking idebenone is believed to INCREASE radical oxygen species formation and do so in spite of the presence of other antioxidants. The boosters of idebenone are limited to people making money from it or from writing about it, in my not even remotely humble opinion. Could it be that idebenone is effectively sole-sourced but there are a wide variety of vendors making high-quality 100% trans-isomer CoQ10? And could it be that by calling it a food supplement, rather than submitting it for drug approvals (as has been done with CoQ10), the manufacturers and touts can get away with selling something harmful?

No thanks. Come to me with multi-center trials across forty years and we can talk about the safety of a particular antioxidant. Naturally-fermented CoQ10 (which is what is used in the trials) is bio-identical to that which our body produces naturally. That's what I take, that's what Cal takes and that's what the people in the NET-PD trials will take. I'm not even convinced about taking the pre-reduced form of CoQ10, ubiquinol. I trust Kaneka, I believe it to be safe, but the evidence just isn't there yet.

The other poster is correct that CoQ10 should be taken with some Vitamin E (1 IU of natural Vit E for every 2 mg of CoQ10), because Vitamin E helps reduce CoQ10 to the active form and recycle it when it's spent. The NET-PD trials include d-alpha-tocopherol (natural vitamin E) with their CoQ10.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Jun 09, 2007 8:04 pm
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Now for Marilyn:

There are no known drug interactions with CoQ10 - the exception being warfarin, but independent researchers haven't been able to replicate those results in 15 years of trying.

CoQ10 is remarkably safe and well-tolerated even in huge amounts.

Just make sure that whichever one you choose, it's made with naturally-fermented 100% trans- isomer CoQ10. Call the manufacturer if they don't put it on the label.

The largest studies have been with 2400 mg/day, + 1200 IU of Vitamin E.

E

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Jun 09, 2007 8:10 pm
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Eric, thanks so much for the advice. Unfortunately, I just visited several sites that sell CoQ10 and I doubt I'll be able to afford it. It wouldn't be so bad at 300mg per day, but at 2400mg per day the cost is prohibitive. The Vit E is no problem. I don't remember it being so expensive years ago when my husband was taking it and that had to be at least 8 years ago, long before PD, AD, and DLB came into the picture.

However, when we see his neurologist in a couple of weeks, I'll be sure to bring up the subject and see what he says. Again, many thanks.

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Marilyn


Sun Jun 10, 2007 12:09 am
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Indeed the clinical director (a neurologist) at The Parkinson's Institute says that the key side effect of CoQ10 is the damage it does to your wallet.


Sun Jun 10, 2007 2:00 am
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Marilyn:

The stuff we use is NOW Foods, 600 mg gel caps, which works out to $100/month. We get them at iherb.com - I have no connection other than being a happy customer. The CoQ10 inside is made by Mitsubishi rather than Kaneka, but I'll cope.

The Vitamin E is just to recharge the CoQ10.

Something to consider - if three years of CoQ10 therapy reduces the time to requiring a skilled nursing facility by three weeks, it's probably cost-effective.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sun Jun 10, 2007 2:50 am
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Eric, thanks for the website info. I will look into it.

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Marilyn


Sun Jun 10, 2007 9:39 am
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EricSEA wrote:
The stuff we use is NOW Foods, 600 mg gel caps, which works out to $100/month. We get them at iherb.com - I have no connection other than being a happy customer. The CoQ10 inside is made by Mitsubishi rather than Kaneka, but I'll cope. Eric


Eric, I checked out the iherb website and it appears that is about the best price for CoQ10. In fact, from most of the sites I've checked, the 600mg dosage is not even available. However, I will wait the two weeks until we see the neuro because, as you suggested, if I can get an Rx then at least I could deduct the cost for tax purposes.

By the way, on the advice of my doctor because I have low HDL, I take 4gms of good quality Omega-3 Fish Oil per day (2gms in a.m. and 2gms in p.m.) My husband's HDL is enviable and he does not take Omega-3, but is that also recommended for LBD? Again, thanks.

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Marilyn


Sun Jun 10, 2007 10:24 am
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The Rx can be sorta used in arrears, per our tax professional.

There seems to be evidence that fish oil reduces the risk of AD; it probably has something to do with improving lipid balance and reducing inflammation. My view is "can't hurt". I can't quite see what bearing it would have on the risk of DLB.

E

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sun Jun 10, 2007 12:50 pm
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