n-acetyl cysteine (NAC) parkinsons clinical trial accepting now

Here is some info on recent study conducted on NAC and it showed what looks like strong results: news-medical.net/news/20160...

Here is a clinical trial.

clinicaltrials.gov/ct2/show...

Anyone have any insight on NAC? If you are in the clinical trial I would love to hear about it.

61 Replies

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  • I have been taking NAC for about two months. Not sure if it is beneficial, but it is too cheap not to try.

  • Has your Dr weighed in on the amount you are taking or the general value of NAC?

  • No. I don't see him for a few months. I am only taking 600 mg or one pill per day.

  • swva, the clinical trial I referenced is testing at this amount:

    "1 600mg tablet 2 x per day (on days IV N-acetyl cysteine is not administered)" or 1200 mg / day. If I get in the trial I will let you know what i find out. Here is the link:

    clinicaltrials.gov/ct2/show...

  • I've been taking a glutathione precursor complex that I buy from Swanson's; it contains 100 mg of NAC. I am going to follow your post to see what news there is in the future about NAC and PD.

  • Me too, Buzz.

  • I just looked at the contents and they all work in synergy to raise glutathione levels in the liver.

    NAC works well with alpha lipoic acid which works well with acetyl l carnitine. And NAC and milk thistle have been used in studies to protect the liver. All of the above have been shown to be neuroprotective in PD models. To round out the field, the supplement contains vitamin C and glutathione. The effect glutathione has on the vitamin C is to recycle it. So your body gets dosed twice with vitamin C as a consequence.

    Interestingly, the supplement contains trimethylglycine, and betaine has been shown to be a potential therapy to reduce dyskinesia from sinemet/madopar:

    Betaine acts as an antioxidant and methyl donor agent versus levodopa-induced oxidative stress and hyperhomocysteinemia in the rat kidney

    congress.tbzmed.ac.ir/TILC/...

    Good choice! The supplement was almost designed for PWP.

  • your opinion means a lot. Thanks for the support.

  • Looking at the doses on the bottle you could easily take 1 more a day. In comparison, I take much more mg antioxidants than are listed on the label:

    1,200 nac

    600 alpha lipoic acid

    1,000 acetyl l carnitine

    4,200 vitamin C

    175 milk thistle

    All of which are substantially higher than on the label. Most supplements are made for the general public who do not have major issues like PD so our antioxidant requirements are higher than the general public. Taking 3-4 will have no negative consequences....

    Rich

    PS. I would love to here your opinion about my car. The people who previously worked on it were bunglers. When I had to chamge the oil & the bolt was on so tight I had to disfigure the bolt and then tap on the 17mm wrench so it would hold. And then while holding the wrench I literally hammered (with a hammer) the wrench to get the bolt to rotate. It took about 15 smacks to get it to rotate. The car was jacked up.

    Changing the air filter - even worse. Apparently the filter has not been changed in years because the back bolt, unfortunately located by the brake fluid reservoir and tubing, was rusted into position. The bolt head was stripped internally so a philips head would not turn it nor could it be taken off with a socket because the head was stripped externally! After trying to alter sockets (disfiguring them to make them fit onto the bolt) I said enough was enough. I bought a 16 inch drill bit and drilled the head off. When I finally got the entire air filter casing off the remaining part of the bolt would not rotate using the tightest setting on the vice grip. It had been rusted on years ago....

    I know the mechanics who serviced the car previously and they will NEVER see the car again....lol....

    Thank god I can now change the air filter...There were leaves, dirt.....inside the casing and the filter itself looked nearly pre-historic....

    Ahhhh geeez.....

  • What model car is your car? I know from personal experience your car's engine will run better now that it's air is being filtered and not choked off. As far as the oil pan plug goes I'd buy a new one and be sure the gasket ring that goes under it is new also and have them carefully replaced by a mechanic you trust at your next oil change because the old plug is probably going to leak now after all that disfiguring and banging. :)

  • 2002 Honda Civic si. Prior to banging the hell out of the bolt I purchased a new one & installed it after unscrewing the old one. Yea what a pain. Today I reassemble the air filter casing & will see what happens...crossing fingers here...

  • I hope you do not need to replace the box. For molded plastic the price is unbelievable, I'd guess. The older the car the scarcer the parts but that is a reliable, long running vehicle so parts will be available for a long time. Aren't you in your senior years? If so it is time to rethink sliding underneath a car like you did to change your own oil. Thanks for the suggestion about taking more than a single dose of that glutathione precursor formula. I'll try it once. I take that at night along with CoQ10. Take care and thanks again.

  • I made some minor holes in it but made allowances for this contingency. I purchased heavy duty epoxy which bonds at an impressive 3960 psi and has temperature resistance to 550 degrees - 24 hour curing time. The only real problem is I am going to have to purchase mini clamps to help seal the gasket in lieu of 2 broken screws. Otherwise the plastic encasing is ok.

    I am a spry 55 year old who looks much younger than his years. I am able to lie on any personal and claim to be 42 and no one would question it. Also, the major symptoms I have is watching occasional muscle twitching in my shoulders and chest but it does not effect my ability to work or do activities related to hand eye coordination. I am fortunate and give the credit to taking CoQ10 - it was a real game changer....I know it has a very inconsistent clinical history but for me it was a godsend.

    Good luck with raising your glutathione levels, coq10, etc...

    Cheers.

    Rich

  • Thanks for the info. What is the name of this supplement? I would like to look it up.

  • I have tried expensive coq10, cheap coq10, waterbased coq10, normal fat soluble coq10...ubiquinone, ubiquinol, PQQ and they all effect me the same way - so I buy the coq10 sold at the local grocery store....when on sale it costs 5.24 + tax for a week..... I wish I could tell you a great brand to buy but to me they are all the same.... a bit exhausted from work here. Having to get up at 4AM is murder and I feel twitchy because of it. Time for a quick nap then dinner.... will contact later.

    Rich

  • Got it, thanks!

  • OK I see it is Dr. Stephen Langer's Glutathione Precursor Complex.

  • I will probably up my dose by one pill per day.

  • Hating to interrupt the auto discussion (which I thoroughly enjoyed) - I take 1200 mg of NAC a day alongside alpha lipoic acid and acetyl l carnitine. I also take Theanine, emergen C, and Inosine. I take the Inosine simply because it's having positive indications in the MJF trials, it's inexpensive and seemed worth a punt. My prescribed medication is 6mg ropinirole every morning. I exercise four times a week. I've been interested in what Rich says about Q10 but in the UK it's very difficult to get it at a high dose for a reasonable cost.

    I've been taking the supplements for a year after much experimentation and research - on my shelf is a whole line of supplements I also tried but have abandoned.

    I'm doing pretty OK - the thing I notice most is I'm much, much less stiff - it used to be agony getting up in the morning, even with ropinirole- now it's much improved. . I'm much less anxious and my energy levels are pretty good. I'm most affected in my left arm, and to my chagrin, can no longer swim, because I list sideways like one of those toy boats you put in the bath. I do have a slight tremor - more of a twitch - but it's not very visible yet and hasn't got any worse. My walking isn't always great but I'm consciously trying to improve that at the moment.

    Of course, taking such a variety of supplements and also conventional medication - albeit a low dose - it's hard to discern which of the mix is having an affect. I once said its like the TENs machine I used when I gave birth - it hurt, but would it have hurt more without it?

    I'm off to see my Parkinsons nurses today. They are not particularly open to the use of alternatives and are very pro conventional meds, so I don't usually discuss it with them, which is a shame.

    Sue

  • First of all, store your alpha lipoic acid in the refrigerator because it loses some of its potency under 60 degrees F:

    6. Stabilities of ALPHA LIPOIC ACID

    (1) Thermal Stability

    Thermal stability of α-lipoic acid was examined. α-lipoic acid easily destroyed at temperature

    as low as 60ºC (as illustrated in Fig. 17). In general, there is a 25% loss of α-lipoic acid upon heating at temperature >60ºC. As a matter of fact I keep all my supplements in the fridge.

    oryza.co.jp/html/english/pd...

    NAC can be taken either with food or on an empty stomach. Acetyl l carnitine and alpha lipoic acid are best taken on an empty stomach because proteins compete with the absorption of any amino acids like protein affects the absorption of levodopa/sinemet/madopar.

    Too bad about the coq10 and when you say expensive, how much does a week supply of coq10 cost in England?

    I have researched inosine and it does have promising PD potential and it is cheap too. Like PEAK ATP, which also raises uric acid levels (really so does levodopa), it is an athletic supplement and so many of them are good for PD.

  • stevie3, I am trying to determine what supplements to take and I appreciate you sharing. I notice the neurologists I've seen don't spend a lot (read NO) time talking about supplements. Still some supplements are getting attention in clinical trials, which is why I posted the NAC trial. It is safe and it is cheap and I am glad it is being trialed. If it shows promise no waiting! If I can't get into the NAC clinical trial I plan to begin taking it 600 mg 2x a day per the trial doses. I am also looking into Inosine as a trial (one is starting here I think) and I have also looked into coenzyme-q10 ... you will want to read this on those recent trials:

    michaeljfox.org/foundation/...

    also referenced here: alzforum.org/news/research-...

    I am also curious about alpha lipoic acid and appreciate everyone sharing their thoughts on the benefit they getting.

  • My understanding, and I may be wrong, is that drug companies aren't interested in researching the efficacy of natural supplements because there is no money in the development. I've put my own list together based on research and much of what I've read here, particularly from Rich but also others. When I started, the list was ridiculously long but I've honed it to those which I believe have a discernible effect and those which are showing promise in trials, like Inosine. The problem with trials is that you may be assigned the placebo, not the desired supplement. I also imagine you may have to stop taking other stuff - if, for example, you were in the NAC trial but also taking Inosine would they request that you stopped the Inosine?

    I saw my PD nurse this morning. She had a trainee physio sitting in. You are right - she's no interest in any alternatives and what I find outrageous is that there has never been any discussion of exercise which we know is beneficial but I didn't know that until I joined this forum. . Her contribution to the debate was to encourage me to increase my medication. It's not her fault - I think her remit is very narrow. I think if/when I need advice on mobility aids and physio she'll be fine but it's locking the stable door. Like everyone else on this site, I realise I am a partner in my own healthcare and am very, very grateful to fellow contributors. Funnily enough, the thing that's made the most difference has been emergen c which laglag told me about. It's worked miracles for my stiffness!

  • stevie, I agree it is frustrating about clinical trials and placebos. Also about the challenge of getting non pharma trials. At least it's very good news about the NAC and Inosine trials coming up. Glutathione trials recently completed but those results are not yet published. The results from the coenzyme-q10 trials, performed all the way to phase 3, is pretty new info. Good to know even if it came back with no clinical improvement for PD.

    Emergen C, good to know! Acerola Cherry powder, a strong form of natural C, just got delivered and I am looking at it now and wondering how to incorporate cherry powder into my routine.

    Be well-

  • Have to agree with you stevie3 that silvestrov is both a resource and a treasure! Rich, I read all your posts and have learned so much in trying to help my husband who was diagnosed with PD 11 years ago, and is now 62. He (unfortunately) takes 2 x 12.5/50 Sinemet 3 times a day plus 1 x Azilect.

    For the past 18 months I, like stevie3, have put my own list of supplements together from what I've read here, particularly from you Rich - but the list became so long and I've chopped and changed around a lot. The problem I have is that my husband, Glen doesn't keep a diary & doesn't give me much feedback so I am unsure from which supplements he derives the most benefit - can only deduce from what I observe.

    I also think he may have cerebellar ataxia as the symptom which bothers him most is having no control of his postural and thigh muscles which means he staggers about a lot and constantly needs to sit down as he is unable to support his own weight. He does not have the Parkinson's shuffle and is not prone to falls but he does have tremor in both hands and the occasional nerve twitching in his arms and legs.

    I buy the ubiquinol type of CoQ10 as I understood it to be better for older people! but it is quite expensive amazon.co.uk/gp/product/B00... however it's not too bad compared to Rich's price of $40.77 for 90 x 100mg +shipping

    Stevie3 I spend about £75 a month on supplements which is similar to you but if Glen were to take the quantities of each supplement I think he should, then I would be spending quite a bit more. He doesn't take anywhere near as much (in grams) of each supplement as Rich, or indeed as he should, as he's not keen on swallowing pills, and if I'm not around, I leave them out for him to take but he either forgets or can't be bothered!

    We've just started NADH 1 x 10mg daily but not so sure I should have started Glen on this strength. Rich which product & dosage would you recommend and should I rather be going for sublingual?

    Had not heard of inosine before I saw your post stevie3 - will read up on it and see if it will be another one to add to my list. Like you, we have found the Drs and neuros here are not interested in any alternatives so it's pointless asking their advice, and not once has any form of exercise been suggested by these professionals, as you say, they just want to increase the meds! Glen manages an 11 minute (unaided) walk every other day, plus a Parkinson's pilates class once a week and occasionally 15 minutes of Qi Gong but it's difficult for him when he can't even stand.

    Rich I'm sure I read one of your posts sometime ago saying that Acetyl L-Carnitine was a better supplement to buy than N-acetyl cysteine....is that correct? Or is it worthwhile giving Glen both do you think?

    Thanks for your help :-)

  • Hello - not sure if you're Glen or Gerry! If you go to the Michael J Fox foundation you will see the Inosine trials written up. Unlike NAC, Inosine can have unwelcome side effects in some people - notably gout - so if your husband has a predisposition to that, I should be careful. But I've had no adverse effects. I've not been able to buy it over the counter but it's readily available on websites but shop around - the price really varies, even for the same brand. My understanding is that the trials are designed to ascertain if Inosine can slow progress down.

  • I'm Gerry btw, wife of Glen. Thanks for replying so fast! Now you mention gout, I do seem to remember reading something about inosine quite sometime ago. I also read somewhere that taking tart cherry juice can counteract this. Will investigate further when I have more time. Just rushing to the gym now.

  • Revisions of supplements can change and when I previously wrote about NAC and ALC I was under the impression that there were possible heart complications related to NAC use. The study which identified this possible cause of concern used 20 times the average human dose on mice and when this fact came to light, I revised my opinion (again).

    N-acetylcysteine (NAC): This Common Antioxidant Supplement Could Cause You Loads of Trouble

    articles.mercola.com/sites/...

    The above article spotlights information which was derived from heavy handed experimentation by scientists. The article below spotlights a recent PD NAC trial, and:

    "Compared to controls, the patients receiving NAC had improvements of 4-9 percent in dopamine transporter binding and also had improvements in their UPDRS score of about 13 percent."

    sciencedaily.com/releases/2...

    In my opinion every PWP should be taking NAC. I have taken between 1,200 - 1,800 mg/d for 2 years and other than growing a second head, I have felt no side effects. This is the reason why I am good at answering questions - twice the brain power. ;)

    The reason why I highlighted ACL as a great antioxidant is because of its concomitant use with alpha lipoic acid:

    Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease.

    "Most notably, we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually."

    ncbi.nlm.nih.gov/pubmed/204...

    So a little dose of this combination is highly effective and a standard sized dose of each, 600 mg ALA + 1,000 mg ALC per day, is huge. This combo is a powerhouse. It is important to take B vitamins with ALA because it can deplete B vitamins especially thiamine (B1).

    And when I take NAC, I always take ALC and ALA - now at 1,200 mg per day of NAC. Why? NAC and ALA work together well too:

    Lipoic acid and N-acetyl cysteine decrease mitochondrial-related oxidative stress in Alzheimer disease patient fibroblasts

    "Furthermore, we observed that the protective effect of LA and NAC was more pronounced when both agents were present simultaneously."

    researchgate.net/publicatio...

    All 3 supplements have glutathione-raising, liver protective effects which have been shown to be good for PD. ALA is a universal antioxidant because it is both fat and water soluble and crosses the blood brain barrier (as does ALC & NAC). There was some debate about NAC crossing the BBB but with the results of the recent PD study, I think this debate has been put to rest.

    NADH

    I did a 2 month trial of NADH and found it to give a mild boost but, being a poor artist, I opted to take nicotinamide, a NAD(H) precursor everyday. My NADH dose was 5 mg three times a day. I don't think 10 mg is a high dose considering:

    "Dr Birkmayer recommended a Parkinson’s disease patient should take 40mg (or more) of NADH daily to experience 10% to 60% improvement in their condition. Dr. Birkmayer said that the patients should see improvements in their condition in about two weeks."

    nadh.com/pages/parkinsons

    The article that fascinated me with nicotinamide comes from the study of tuberculosis entitled:

    Big Brains, Meat, Tuberculosis, and the Nicotinamide Switches: Co-Evolutionary Relationships with Modern Repercussions?

    ncbi.nlm.nih.gov/pmc/articl...

    It is a long but fascinating article which also encouraged me to take a supplement which has tryptophan in it (I take Evening Primrose Oil - in the evening) to help me sleep.

    Not keen on swallowing pills?

    Liquid acetyl l carnitine:

    luckyvitamin.com/p-884880-m...

    Liquid alpha lipoic acid: amazon.com/Drs-Advantage-Li...

    Transdermal NAC: google.com/search?q=N+Acety...

    These alternative forms of ALA, ALC and NAC are more expensive than the pill form and from a amazon.com review, apparently the NAC skin cream smells bad.

    Basically for 65 dollars, at 2 applications a day, you get a months supply.

    CoQ10

    Like I have previously stated, it has a unreliable PD clinical history but it can only help and has been shown to work well together with ALA and ALC:

    Management of the aging risk factor for Parkinson's disease.

    "The combination of alpha lipoic acid, acetyl-l-carnitine, coenzyme Q10, and melatonin supports energy metabolism via carbohydrate and fatty acid utilization, assists electron transport and adenosine triphosphate synthesis, counters oxidative and nitrosative stress, and raises defenses against protein misfolding, inflammatory stimuli, iron, and other endogenous or xenobiotic toxins."

    ncbi.nlm.nih.gov/pubmed/242...

    Gotta go and I hope this helps.

    Rich

  • silvestrov Thanks for this Rich - whilst Glen can still swallow, I'll stick with the capsules as the liquid supplements you listed are a bit expensive.

    This is the article I saw by Ray Sahelian which made me think a lower dose of NADH might be better raysahelian.com/nadh.html but again, as you mentioned, this is an expensive supplement. Do you now take nicotinamide riboside or just Nicotinamide?

  • I take Nicotinamide/niacinamide only. In PD , Alzheimers, MS, Friedreich’s ataxia....it has been shown to be good in clinical models. It is a unique vitamin because it has multiple applications including antimicrobial activity. It killed MYRSA in a trial and is an effective therapy against Mycobacterium tuberculosis and the #1 and #3 TB antibiotics, Isoniazid and Pyrazinamide, are analogues of nicotinamide. It is also good for joint flexibility and it has been a component of my successful fight against osteoarthritis. I think it and vitamin C are the most interesting vitamins I have studied. It also has anti-hiv activity:

    ncbi.nlm.nih.gov/pubmed/776...

    There are many, many studies featuring nicotinamide.

    Low dose NADH sounds good to me and the article mentioned using NADH together with Coq10 for chronic fatigue and the results were better than using NADH alone. By coupling supplements at lower doses you can get better results with lower or no side effects.

    Yes those liquid vitamins are for people with deeper pockets than I have.

    Have a good evening I am off to relax a bit after working today.

    Rich

  • Thanks for this Rich......really do appreciate your time and knowledge.

    Nicotinamide does appear to be a very useful supplement especially as Glen has osteoarthritis, has had two complete knee joint replacements and is presently undergoing treatment for back/spine problems on the NHS here in the UK.

    As it's gone midnight over here, guess it's time to hit the sack!

    Once again, many thanks.

  • Glen should have been taking "Avocado Soybean Unsaponifiables (ASU)" for OA for years. It helped to eliminate the cracking, weakness and pain - it worked well for me:

    arthritis.org/living-with-a...

    Also baicalin from Scutellaria baicalensis is great of OA and there is a product specifically made from it: Limbrel

    limbrel.com/hcp-primary-ing...

    But the problem with Limbrel is it can cause liver toxiciity:

    annals.org/article.aspx?art...

    First question is baicalin good for PD? Yes:

    search.yahoo.com/yhs/search...

    How to protect the liver from baicalin?

    I take it once a day before bed because it has anti-anxiety activity and I take it with another anti-anxiety agent, theanine. And theanine has been shown to protect the liver in multiple studies:

    researchgate.net/publicatio...

    Also NAC protects the liver and is the go to treatment for acetaminophen OD:

    ncbi.nlm.nih.gov/pubmed/664...

    I take baicalin and theanine in a 1 to 1 ratio and use a powder form of each to ensure the exact measurement:

    amazon.com/Baicalin-Powder-...

    amazon.com/dp/B00333D6U2/re...

    All the above and nicotinamide, have helped me to walk without pain or discomfort. I cannot run but I have not been able to since 1985 because of athletic injuries.

  • Oh my Rich, so much to read! Looks like I've a lot to learn (and I thought I was quite well versed as far as supplements are concerned). Thanks so much for all the information. Wish I'd known about ASU 20 years ago.

  • Can I add ALA and ALC without the potential of any major side effects ? Any special time when I can give them .. Mom has major daytime sleepiness .. had added NAC for dyskinesia - but that might have added to the issue of sleepiness .. at my wits end .

    Also thinking of adding Maca to the greens she is taking

  • Have you ever looked into Methylene Blue - check Earth clinic.com

  • You are so on spot regarding this. The drug companies stand to lose billions of dollars if we come up with a simple effective and cheap alternative.

    Also, I sent all the literature regarding NAC to my parents to discuss with their Doc, she had to look up the link and all we got from her was - 'it wont be harmful to try it'.

    From MJF foundation - CoQ10 - has no benefit in parkinsons michaeljfox.org/foundation/...

    DHEA doesn't survive the acid in our stomach - but its derivative has shown some promise .. .

    While certain confirmatory studies remain in progress, our data to date suggest a potential role for HE3286 in the treatment of PD and parkinsonism-related disorders and provide incentive for further investigation.

    The mainifestation of the disease is different in different folks - some with more balance issues and others with more tremor, the real test is getting feedback from fellow patients .

    So on that note - NAC - what benefit are folks seeing after adding that ? Same time as Sinemet/Mirapex, with or without food , does it help dyskinesia (my mom can be pretty dyskinesic), drug interactions, side effects ?

    Also, before I end this note- have folks tried Turmeric (Curamed is fantastic ) for imflammation.

  • "The manifestation of the disease is different in different folks - some with more balance issues and others with more tremor, the real test is getting feedback from fellow patients ."

    And I believe this is true because I think there are different causes for idiopathic Parkinson's disease and related parkinsonisms. I think that there are multiple etiologies for the disease thus the different manifestations. For instance, I have a case of insecticide/herbicide induced parkinsonism and this is the reason why CoQ10 works so well for me. In a clinical setting, rotenone and MPTP are 2 neurotoxicants which induce a PD-like condition in lab animals - rodents, non-human primates and yes, sheep. A MPTP sheep parkinsonism model exists. MPTP and rotenone are mitochondrial Complex I Inhibitors and

    Coenzyme Q10 as a therapy for mitochondrial disease

    sciencedirect.com/science/a...

    In the early 1980's a group of drug users in California injected tainted synthetic heroin which caused various degrees of parkinsonism. How these people differ from idiopathic Parkinson's patients is telling. They had varying degrees of parkinsonism directly, dose dependently, related to the amount of MPTP toxin they injected. Some had a mild case some severe....it just depended. These patients had their brains scanned and it was found that, unlike IPD, they had uniform destruction of the caudate and putamen. In IPD the putamen is much more heavily damaged plus the former drug users had no evidence of Lewy bodies - the protein alpha synuclein misfolds and clumps becoming Lewy bodies. Though there was evidence of additional cellular degeneration there they had no dementia.

    Mild parkinsonism in persons exposed to 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP).

    ncbi.nlm.nih.gov/pubmed/281...

    Pattern of dopaminergic loss in the striatum of humans with MPTP induced parkinsonism

    "RESULTS—In the MPTP group there was an equal degree of reduction of dopaminergic function in the caudate and putamen. This was different from the greater putaminal than caudate loss in Parkinson's disease (p<0.001)."

    "CONCLUSIONS—Parkinson's disease is not caused by transient exposure to MPTP."

    ncbi.nlm.nih.gov/pmc/articl...

    Evidence of active nerve cell degeneration in the substantia nigra of humans years after 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine exposure.

    "Lewy bodies were not present."

    ncbi.nlm.nih.gov/pubmed/105...

    My father had IPD and I watched his symptoms for longer than a decade and know all his PD-related symptoms and when I compare myself to him, I know I have something else, not IPD. I am much closer to the drug addicts of the early 1980's because MPTP's brand name is Cyperquat and it is a herbicide and is chemically similar to the herbicide paraquat. I had 2 years of chronic exposure to low doses of various herbicides, insecticides and Monsanto's Roundup.

    Paraquat induces behavioral changes and cortical and striatal mitochondrial dysfunction

    sciencedirect.com/science/a...

    The causative agent for Lyme disease, borrelia burgdorferi, can cause parkinsonism, and like the MPTP drug users, no lewy bodies were identified in a case study:

    Lyme-Associated Parkinsonism: A Neuropathologic Case Study and Review of the Literature

    "No Lewy bodies were identified...."

    samento.com.ec/sciencelib/a...

    As for DHEA and its possible effectiveness in treating parkinsonism disorders, it was quite effective in improving the condition of a young woman who had lipopolysaccharide (LPS)-induced parkinsonism. She was a lab assistant and 10 mcg of LPS entered a cut in her thumb and within 6 years her substantia nigra was destroyed and she had L-dopa responsive parkinsonism:

    Efficacy of Dehydroepiandrosterone DHEA in the Treatment of Lipopolysaccharide-induced Parkinsonism (a Case Report)

    "DHEA is very effective because it stimulated not only the production of dopamine through the increased synthesis of estrogen but also reduced the effect of inflammation on the dopaminergic neurons so that the less inflamed neurons are able to produce more dopamine. Another indication for the role of inflammation was that even low doses of the glucocorticoid prednisolone (2.5 – 5 mg) also improved the symptoms of PD although not as much as DHEA. This is probably due because the presumable prodopaminergic effect of DHEA is missing in glucocorticoids. Probably the DHEA would be probably less effective if the chronic LPS-induced inflammation was not the main cause of the degeneration and dysfunction of the dopaminergic neurons in the SN."

    Again,

    "Probably the DHEA would be probably less effective if the chronic LPS-induced inflammation was not the main cause of the degeneration and dysfunction of the dopaminergic neurons in the SN."

    endotoxin.gmxhome.de/dhea.htm

    So coq10 may be only good for mitochondrial dysfunction induced by herbicides and DHEA may only be good for LPS-induced parkinsonism.

    Then again it may depend on the specific cocktail of nutrients used with CoQ10 because creatine and Coq10 looks very promising:

    The Effect of Creatine and Coenzyme Q10 Combination Therapy on Mild Cognitive Impairment in Parkinson's Disease

    "Combination therapy with creatine and CoQ10 could delay the decline of cognitive function in PD-MCI patients and could lower their plasma PL levels; therefore, this combination therapy may have a neuroprotective function."

    karger.com/Article/Abstract...

    And remember to never take creatine and caffeine:

    Caffeine and Progression of Parkinson Disease: A Deleterious Interaction With Creatine.

    ncbi.nlm.nih.gov/pubmed/263...

    ++++++++++++++++++++++++++++

    Herbicide/insecticide exposure is one of the main possible causes of PD and researchers are looking into possible genetic and pathogenic infectious agents also. The cerebral spinal fluid of PD patients was investigated and there was evidence of multiple CNS infectious agents:

    CNS infections, sepsis and risk of Parkinson’s disease

    "Conclusions This study provides preliminary evidence for an association between CNS infections, but not sepsis, and a higher future risk of PD. It also shows that PD patients were more prone to CNS infections and sepsis than controls."

    ncbi.nlm.nih.gov/pmc/articl...

    ++++++++++++++++++++++++++++++++++++

    As I previously stated, my hypothesis is that if scientists can firmly understand what caused parkinsonism in the individual patient then they will be able to prescribe appropriate therapy for each patient. Right now therapy is 'one size fits all' and not unsurprisingly, therapeutic results are variable and haphazard. 63% of PWP are experimenting with alternative therapies and thus IPD is a disease of trial and error.

    +++++++++++++++++++++++++++++++

    I have been taking NAC for 2+ years after I was completely stable in my therapy so it is difficult to differentiate the effect it had on me. I take it twice a day with other antioxidants which have been shown to work well with it, alpha lipoic acid and acetyl l carnitine.

    There are ample studies on NAC's efficacy for various diseases and the rationale and test results for PD are compelling. In terms of NAC suppliers I recommend Nutrabio, the same place I purchase my theanine, because their NAC is pharmaceutical quality. It is more expensive than other brands but it is better:

    nutrabio.com/Products/n-ace...

  • Does this look like a good protocol to follow (taking sinemet, mucana, amantadine, Mirapex and some other meds for depression, thyroid etc. )

    Is this a god protocol to add to her existing list .. I think she has od'd on acetaminophen and other pain drugs as she had a fall a month ago . Since then she can barely open her eyes .. we started NAC for dyskinesia , but my dad thought NAC added to the daytime sleepiness . ... but stopping NAC hasn't changed things that much .

    Will be starting her on a liver cleanse .. and then add the following protocol :

    1) Slow release melatonin, 2mg at night; Circadian (Neurim Pharmaceuticals) (prescription: family practioner).

    2) Alpha lipoic acid 200-400mg per day and acetyl-L-carnitine 250-500mg per day, both taken together, starting

    with the lower dose, right after a meal, and in divided dose for the higher dose.

    (OTC supplements; available in any reputable health food retailers).

    3) Coenzyme Q10 200mg per day, rising slowly (month by month) until control is achieved, not exceeding

    800mg maximum per day, in divided doses, then 200-400mg per day as maintenance dose / in divided doses.

    (OTC)

    4) Vitamin E (400IU once a day with coenzyme Q). (OTC)

    5) Acetyl-L-carnitine 250mg at night. (OTC)

    I think we will skip on the melatonin ..

    Is there a minimal dose we can start with .. she has had PD for 10yrs and this daytime sleepiness - hardly opening her eyes is really painful for us to see -- the news about my uncle (mon's brother) hasn't helped either . Sorry to bug you but would really appreciate your input .

    I know you had talked about dopamine agonist - Mirapex causing this .. but not sure we can decrease the Mirapex dosage .

    Sorry for rambling on - just want her to get better ..

  • Your posting is very full of information and it is difficult to post a concise response. I have to ask some questions:

    "I think she has od'd on acetaminophen and other pain drugs as she had a fall a month ago . Since then she can barely open her eyes."

    in addition to acetaminophen what other pain drugs were used? I ask this because my father broke his hip in a fall and the drugs made him delusional and paranoid. They very much affected him and he never seemed the same after this?

    I am not an acetaminophen fan because it depletes glutathione from the liver and when acetaminophen OD happens, NAC is injected into an individual to save their life. Acetaminophen has been shown to be neuroprotective in PD models but its potential dangers outweigh its benefits. My preferred NSAID is ibuprofen because it has been shown that taking 2-3 a week reduces the risk of PD by 40%. Sure if someone has PD this means nothing but it does have a positive relationship with the disease and acetaminophen does not. The safest way to consume ibuprofen is by taking the children's liquid form with is much safer than the standard tablet. I take ibuprofen 4-5 times a week.

    healthland.time.com/2010/02...

    "Will be starting her on a liver cleanse..."

    What product/herb/etc... are you using to cleanse his liver?

    Alpha lipoic acid:

    in order to maintain the potency of ALA you need to refrigerate the product. If it rises above 60 degrees it rapidly losses its effectiveness.

    "Thermal stability of α-lipoic acid was examined. α-lipoic acid easily destroyed at temperature

    as low as 60ºC (as illustrated in Fig. 17). In general, there is a 25% loss of α-lipoic acid upon heating at temperature >60ºC."

    oryza.co.jp/html/english/pd...

    If you want to cut down on taking multiple pills of acetyl l carnitine and alpha lipoic acid both are offered in the same supplement:

    vitacost.com/vitacost-alpha...

    I use the above brand and take 1 pill with breakfast, raison brand, and the other pill between lunch and dinner. It is an energizing supplement and should never be taken with or after dinner. it can cause anxiety in some people though this does not happen to me.

    When taking alpha lipoic acid, acetyl l carnitine and levodopa a B complex vitamin needs to be taken. Alpha lipoic acid can deplete thiamine plus levodopa causes a rise on homocysteine - a non-protein forming amino acid which is associated with heart disease and vascular dementia. B vitamins are essential when taking these amino acids.

    Coenzyme Q10: most standard brands of coq10 are fat soluble and eating some dietary fat will aid in its absorption. Good fats include coconut oil, olive oil and in a pinch, cholesterol will do. Since levodopa is part of the regimen it is good to remember that breakfast and lunch should be protein free - but not fat free, and dinner is when protein should be eaten. Proteins compete with other amino acids for entry into the brain and central nervous system. Hence meat interferes with levdopa and will limit its effectiveness. And this applies for dairy products too.

    4) Vitamin E (400IU once a day with coenzyme Q). (OTC.

    I am not a fan of taking vitamin E with CoQ10 because of a study I read by Douglas Hunter, PHD:

    Coenzyme Q10 in Early Parkinson Disease

    "Another possibility may be the antagonism of CoQ10 uptake by the high dose (1200 IU) of vitamin E received by the subjects in the study of Shults and colleagues. In a study with patients who had mild hypercholesterolemia,3 200 mg of CoQ10 (100 mg twice daily) increased the plasma CoQ10 level from 0.72 to 4.66 mg/L; however, when 700 mg (350 mg twice a day) of vitamin E (as d-α-tocopherol) was also given, the plasma CoQ10level increased only from 0.84 to 2.71 mg/L."

    archneur.jamanetwork.com/ar...

    There has been much ado about coq10 and PD because the clinical results have been less positive than encouraging. Coq10 seems to be either a hit or miss supplement doing everything or nothing and even if it does not improve his symptoms it will probably help with energy levels. CoQ10 levels decline with age and regardless if an elderly person has PD or not, it should be a supplement everyone takes.

    It is also good to keep in mind if there is no response to standard coq10, ubiquinone, there was a Japanese study showing that 300 mg/day of ubiquinol significantly lessened levodopa on/off:

    ncbi.nlm.nih.gov/pubmed/260...

    ".....we started NAC for dyskinesia."

    If I were going to endorse 1 supplement for dyskinesia it is omega 3 fatty acids in the form of DHA. High potency salmon oil, cod liver oil and krill oil all have DHA omega 3 as a component. The higher the dose of DHA the better. Omega 3s can be taken in doses up to 7,100 mg per day but because of its blood thinning properties at this level blood tests must be done. Currently a DHA dyskinesia trial is forming:

    clinicaltrials.gov/ct2/show...

    "Docosahexaenoic Acid (DHA) 2 grams per day taken for 1.5 years."

    If you decide to purchase high quality fish oil it must be distilled at a molecular level to remove toxins. Let's face it, we are trashing the oceans and have polluted them greatly.

    Most quality fish oil supplements also have EPA omega 3 fatty acid and it recently has been shown to be a depression fighter:

    EPA but not DHA appears to be responsible for the efficacy of omega-3 long chain polyunsaturated fatty acid supplementation in depression: evidence from a meta-analysis of randomized controlled trials.

    ncbi.nlm.nih.gov/pubmed/204...

    If he has problems swallowing larger pills like omega 3s, it can be purchased in their pure liquid form. They can be spoon fed or added to a drink for consumption. I take a lot of pills and know it can be difficult for some people to swallow especially those with PD.

    What anti-depressants his he taking?

    What is his thyroid medication and I presume it is a hypothyroid condition?

    +++++++++++++++++++++++++

    Supplements specifically found to relieve daytime sleepiness and/or fatigue:

    I may have posted this in this tread but do not have time to look for it so this may be a duplication. There is an amino acid in red algae called homotaurine and in PD patients it was found to reduce daytime sleepiness:

    "Our data suggest a beneficial effect of homotaurine on excessive sleepiness. Future studies are encouraged to confirm this promising role of homotaurine in promoting the sleep/awake cycle in patients with PD."

    ncbi.nlm.nih.gov/pubmed/258...

    Low dose naltrexone is given at 1 - 4.5 mg before bedtime and when tested on PD patients it was shown to reduce fatigue:

    Abstract #13: Low-Dose Naltrexone's Tolerability and Effects in Fatigued Patients with Parkinson's Disease: An Open-Label Study

    "In this small, open-label trial, LDN therapy was well tolerated and was associated with equivalent reductions in fatigue compared with historical benchmarks."

    sciencedirect.com/science/a...

    +++++++++++++++++++++

    I know I am throwing a lot of information at you and if you want more about LDN it will be forthcoming.

    Please answer the embedded questions and when you respond more information will be forth coming.

    Rich

  • Rich,

    Thank you for taking the time to post such a detailed answer. Much appreciated !!

    My mom is taking anti-depressants along wih meds for slow thyroid etc .. not sure what they are .. but will chk with Dad .

    I bought livamend tablets :

    amazon.com/Body-Ecology-Liv... for doing the liver cleanse.

    She might not have od'd on tykenole during thi fall - dad said she took more advil, but I feel over the years she has taken a ton of it .

    Given my Dad is the primary care giver - (they do get helpers also) I don't want to put tonnes of more load on him.

    I was thinking of doing the following as per your suggestion:

    1) The mix of ALA and ALC - twice a day

    Any side effects ?

    2) Lower dosage of NAC - 200mg ( cause it seemed to add to the sleepiness. Can that happen?? She is def more sensitive than most folks . I do feel that there was a slight improvement in dyskinesia - but didn't take it long enuf to ascertain that .

    WHATS THE LOWEST OPIMAL DOSE SHE COULLD TAKE .

    1) She is already taking Omega3/Coconut oil/ B12 injections , coq10 (100mg) , Mucana , Calcium , Vit/Mineral formula . Does she still need extra Vit B?

    We are trying to get her back into her exercise routine and if the daytime sleepiness doesn get beter , will add homotaurine ? Whats the best place to buy it and whats the minimal dose ? Any side effects?

    Also, I read that mucana is more effective when taken with cabidopa , so that it becomes like sinement - levodopa / carbidopa formula. Is that true? Has mucana really worked in replacing

    The doc said give her more levodopa when she is sleepy, but that gave her more dyskinesia while she is in the sleepy mode. Ridiculous!!

  • "I bought livamend tablets;"

    For a randomly chosen product you made a good choice. Before I take any supplement I investigate whether it has been tested for PD and here is what I found about LivAmend, first its ingredients:

    searchlock.com/search?safe=...

    Artichoke extract - 400 mg:

    Artichoke Extract (Luteolin)

    nootropicsexpert.com/artich...

    Neuroprotective and neurotrophic effects of Apigenin and Luteolin in MPTP induced parkinsonism in mice.

    ncbi.nlm.nih.gov/pubmed/250...

    Wasabi powder - 50 mg:

    Neuroprotection by 6-(methylsulfinyl)hexyl isothiocyanate in a 6-hydroxydopamine mouse model of Parkinson׳s disease

    sciencedirect.com/science/a...

    Sarsaparilla extract - 400 mg. Quite recently, I have been reading about smilagenin, a component of Sarsaparilla (and Yucca too...) and smilagenin is great for PD:

    Reversal of dopamine neurons and locomotor ability degeneration in aged rats with smilagenin

    "Smilagenin elevated GDNF levels in both the striatum and midbrain."

    sciencedirect.com/science/a...

    John Pepper goes on compulsively about GDNF and exercise as a way to reverse PD. If this were the way to reverse the condition (if this were true), millions of people would have already done it already by exercising. My father, who had idiopathic PD, rode his bicycle as far as 60 miles a day and held the condition at bay but did not reverse it. 'Fast walking + GDNF = reversal of PD' is a nice but simplistic formula. Yes exercise is absolutely essential but the need for supplements/drugs to help those with PD is obvious.

    Milk thistle (silymarin) 60 mg:

    Melatonin or silymarin reduces maneb- and paraquat-induced Parkinson's disease phenotype in the mouse.

    ncbi.nlm.nih.gov/pubmed/209...

    Yes even melatonin is neuroprotective in PD too.

    Let me continue about the liver. By taking NAC you will be supporting liver detox permanently because it builds up the supply of glutathione in the liver which detoxes it. Let me give you an example. Alpha lipoic acid, Milk thistle and selenomethionine, the organic form of selenium, has been used to improve the condition of Hepatitis C patients:

    A conservative triple antioxidant approach to the treatment of hepatitis C. Combination of alpha lipoic acid (thioctic acid), silymarin, and selenium: three case histories.

    ncbi.nlm.nih.gov/pubmed/105...

    My point is the liver detox/support will not end after the bottle of LivAmend is gone. Alpha lipoic acid, acetyl l carnitine and NAC all protect the liver (and all are good for PD).

    As for a dose of NAC I have the constitution of an elephant because I have taken 1,200 - 1,800 mg of NAC a day for 2 years or so with no side effects. I can only say that you may need to experiment and find tolerances. Any amount of NAC is good but more is better. In the study which showed NAC to improve the condition of PWP they used 1,200 mg/day with an additional dose of intravenous NAC (I think once a week).

    If only 100 mg of NAC is tolerable then take it with alpha lipoic acid and acetyl l carnitine. They all work well together and you might as well get the most for your money.

    As for alpha lipoic acid - ALA, and acetyl l carnitine - ALC, I have taken 600 mg/day and 1,000 mg/day ALC for even longer say, 3 years and these are maximum doses. Because the combination works so well together an even lower dose of each will be equivalent to a much larger dose of either alone. As for side effects they can increase anxiety and sleeplessness so starting at a lower dose is a good thing. That is why both should be taken no later than mid afternoon. Both have been shown to improve cognition in people with Alzheimer's disease and they can improve memory.

    If you want to experiment with Mucuna the brand to use is Zandopa (HP200) because it has been tested against levodopa/carbodopa and shown to improve the condition of all tested:

    An alternative medicine treatment for Parkinson's disease: results of a multicenter clinical trial. HP-200 in Parkinson's Disease Study Group.

    "Sixty patients with Parkinson's disease (46 male and 14 female) with a mean (+/- SD) age of 59 +/- 9 years were treated in an open study for 12 weeks. Of these, 26 patients were taking synthetic levodopa/carbidopa formulations before treatment with HP-200, and the remaining 34 were levodopa naive."

    "Statistically significant reductions in Hoehn and Yahr stage and UPDRS scores were seen from baseline to the end of the 12-week treatment (p < 0.0001, t-test)."

    ncbi.nlm.nih.gov/pubmed/939...

    "Does she still need extra Vit B?"

    When taking any form of levodopa homocysteine can build up in the person and this is counteracted by B vitamin supplementation. For instance:

    Effect of L-dopa on plasma homocysteine in PD patients: relationship to B-vitamin status.

    "Plasma homocysteine was correlated with plasma folate, vitamin B(12), and PLP concentrations in the treatment group (p <or= 0.007) but not in the controls."

    ncbi.nlm.nih.gov/pubmed/126...

    Of the B vitamins highlighted in the above article, B12, Folate and pyridoxyl 5 phosphate - P5P, were mentioned. If you take folate, methyltetrahydrofolic acid, then you have to take B12/methylcobalamin. If you take anything with carbidopa/benserazide you have to take P5P. If you are not taking carbidopa then the need for P5P is not there.

    Your doctor gives B12 shots in the form of cyanocobalamin, it is not good, and the better from of B12 is methylcobalamin. It is the most potent form of B12 and I have taken it for years. Sublingual B12 is best and I take 2.5 mg a day..

    Methylcobalamin Protects the Brain from Glutamate Damage

    naturalnews.com/029309_meth...

    Methyltetrahydrofolic acid (Folate) - (standard folic acid is not very good), can be taken at lower doses than folic acid because it is the bioavailable form. 400 mcg per day is a safe dose.

    Folic acid could suppress Parkinson’s – new study

    www2.le.ac.uk/offices/press...

    Have a good night.

    Rich PS: homotaurinehealth.com/

  • Thank you so much ... so nice to get your detailed replies . Everyone in the same boat so patients end up having more 'empathy' than you can expect from a Doctor .

    I did quite a it of research before buying livamend and I am glad that I was on the right track. I am going to try the ALA, ALC, NAC - once a day after two weeks of livamend. Is there a supplement available which has all three ?

    She is also taking Curamed - Turmeric (which definitely helps with pain as I too take it daily)

    Little confused on the VitB - which brand do you recommend ? Last time the went to doc she said she doesn't need vit B injections anymore as her levels are good .. not sure if she checked everything . Mom is taking a good mutli vit /mineral formula from natural health food store.

    My mucana comes from Indigo Herbs of Glastonbury, but with so many things on hand my dad hasn't been able to give it to her consistently .

    How much mucana equals a 25/100 sinemt ? She can get dyskinesia with Mucana also .

    I def think exercise helps her , lets hope we can start it soon.

    Thank you again !!

    p.s.: Also want to start them on the moringa olifera tea. !!

  • " I am going to try the ALA, ALC, NAC - once a day after two weeks of livamend. Is there a supplement available which has all three?"

    ALA & ALC have been shown to work together at low levels when combined (and both pass the blood brain barrier). NAC & ALA work together because they are both sulfur based:

    "Alpha lipoic acid is a di-thiol antioxidant. It is reduced to the thiol form intracellularly. The di-thiol (two sulfur) character of its molecular structure..."

    nutri-spec.net/articles/lip...

    "N-acetyl-L-cysteine (NAC), a precursor of L-cysteine, not only elevates the level of glutathione in both astrocytoma and astrocyte cultures, but also affects the cellular level of sulfane sulfur."

    ncbi.nlm.nih.gov/pubmed/174...

    As for buying all 3 together that is a little tricky. As noted you can purchase ALA & ALC together:

    vitacost.com/vitacost-alpha...

    And NAC and ALA can be purchased together:

    hsn.com/products/alpha-lipo...

    The above product has an attractive dosage:

    150mg NAC + 150 ALA.

    This lower dose of each may have less side effects and if you were to throw on a say 300 mg capsule of ALC, multiple doses may be better tolerated. Without a doubt this combination of antioxidants is amongst the most powerful you can buy.

    If you want a proverbial 'hat trick' of ALA, ALC and NAC, pardon the hockey terminology, there is a hearing supplement that is loaded with various vitamins, minerals and antioxidants called:

    Advanced Hearing Formula

    advancedbionutritionals.com...

    This may be a viable option because in addition to having low levels of NAC - 250 mg, ALA - 100 mg, ALC - 160 mg, it is loaded with other minerals, etc... which have been shown to be good for PD. Including, magnesium bisglycinate - one of the better forms of magnesium, bisglycinate chelate, EGCG/green tea extract, low levels of methylcobalamin and folate, Ginkgo biloba... even betacarotene and vitamin E have been shown to have a relationship with PD:

    foodconsumer.org/newsite/Nu...

    The hearing 'vitamin' if you will may not be a bad option.

    "How much mucana equals a 25/100 sinemt ? She can get dyskinesia with Mucana also"

    No. I have communicated with several people who were taking 40% levodopa from mucuna and they were taking 11.2 - 12 grams of levodopa a day.... you read that right. They had nausea and cramps but no dyskinesia. Here is a study showing this effect:

    The Antiparkinsonian and Antidyskinetic Mechanisms of Mucuna pruriens in the MPTP-Treated Nonhuman Primate

    hindawi.com/journals/ecam/2...

    On the HU site people have read that MP is something like 3 times stronger than sinemet. Finding a simple formula of conversion of MP to sinemet is needed but problematic. What I would do is purchase Zandopa, which was developed for PD, follow the directions the experiment with dosage. Record the dose taken and adjust it up or downward if needed. Or take more/less doses if needed.

    "Little confused on the VitB - which brand do you recommend ? Last time the went to doc she said she doesn't need vit B injections anymore as her levels are good .. not sure if she checked everything . "

    More B vitamins are needed with long term consumption of any form of levodopa. It is a safety precaution to prevent homocysteine accumulation. As for brands i just look for B12/methylcobalamin in a sublingual form 2.5 mg or greater.

    "moringa olifera"

    Thanks for introducing me to this herb. it certainly looks like it is packed with vitamins and amino acids"

    moringatree.co.za/analysis....

  • Started doing the liver detox.. but the sleepiness persists .. thinking of starting with homotaurine forst .. and then a week later the nac (lower dose) and then the alc/ala low dose combo .

    How does the homotaurine help in the sleepiness ? Should I put her on that before other nac/alc/ala combo , to see if that helps ?

  • I have never homocysteine but I have read about it. It affects the hypothalamus by raising dopamine (along with the striatum) and this may be the answer:

    Effects of taurine, homotaurine and GABA on hypothalamic and striatal dopamine metabolism

    link.springer.com/article/1...

    I would use the homoctaurine first to see if it will affect sleepiness. Then use the trio afterwards.

  • Wondering whether there are any side effects or drug interactions

  • There are hard;y any reviews except - webmd.com/vitamins-suppleme...

  • I think the following link has the information you are looking for.

    naturaldatabase.therapeutic...

    And here is the phase three Alzheimer's clinical trial that was referenced in the article:

    ncbi.nlm.nih.gov/pubmed/229...

    Parkinson's disease is associated with hippocampal atrophy.

    ncbi.nlm.nih.gov/pubmed/128...

  • Thank you .. doing livamend and coconut oil right now , trying to see if that will make a diff .

  • 60 100mg caps of q10 cost around £30 - about 40 dollars. It's hard to source the high strength too.

  • Geezzz....that is a rip off. In the states I can purchase an entire months suply of coq10 for that price...... what you listed is a 5 day supply at 400 mg per meal. I need to go change a auto part and will see if there is a cheaper supplier for you...

  • Thanks! I order stuff mail order mostly, from wherever is cheapest and also so I can get melatonin which is not available without a prescription here. Currently I'm ordering most of my stuff through biovea - I reckon I spend about 90 dollars a month (£70) on supplements - Inosine is relatively inexpensive but if you use the amount the trials are using, you get through a lot. Amazon is good too. But on the plus side, in the UK, we have the NHS so I don't pay for the very excellent healthcare I receive. Well, I do, but through my taxes, and that's ok.

  • After searching EBAY. always a good idea, I found the best 2 deals available.

    Option 1 standard CoQ10 (ubiquinone):

    Kirkland Co-Q Co Q10 CoQ10 Coenzyme 300mg Potent 100 Softgel

    Price: US $28.68

    International shipping: $22.50 USPS First Class Mail Intl / First Class Package Intl Service

    Total cost: 51.18 USD, for a month's supply assuming you take 900mg/day (a good, large dose).

    ebay.com/itm/Kirkland-Co-Q-...

    Option 2: Ubiquinol - reduced CoQ10 which is ++ potent.

    Source Naturals Ubiquinol CoQH Coenzyme Q10 100mg - 90 softgel

    US $40.77 Shipping: $23.50 USPS First Class Mail Intl / First Class Package Intl Service

    Total cost: 64.27 USD for a months supply - three times a day, of ubiquinol.

    ebay.com/itm/Source-Natural...

    I hope this helps.

    Rich

  • Splendid Rich, thank you. I will get ebaying. You are a resource and a treasure.

  • Regarding NAC, As outlined in the clinical trial currently underway at Jefferson in Philadelphia, highlighted at the onset of this post:

    clinicaltrials.gov/ct2/show...

    Keep in mind, that in the study previously conducted and also in the one that is still recruiting in Philadelphia, there were 2 groups. The first group received a combination of oral and intravenous (IV) NAC for three months. These patients received 50mg/kg NAC intravenously once per week and 600mg NAC orally 2x per day on the non IV days. The second group received just their standard PD care. It should be noted that both arms will receive standard PD care which will be augmented with NAC. So no interruption of meds is necessary.

    Since NAC was administered both through IV and also by pill. I hope the same benefit can be derived with pill only. I wish Jefferson would do a control study pill only.

  • My doc sez: "In regards to N-acetylcysteine for Parkinson's disease, I am an expert on this and am currently studying it as a neuroprotective drug in Parkinson's disease. As far as we can tell, it seems quite benign, but no one has taken the doses required to get high enough levels across the blood brain barrier for more than 6 months, so we don't have any long-term safety data at these doses."

  • Thanks Beckey! And so a low dose is okay, but perhaps not enough to really work? How much does your doc say you should try?

  • My doc told me not to try it at all unless I was in a clinical study, but that's easy for her to say!! I'm now taking 1,200 mg. twice a day but the last few days I feel like my tremor is worse and I've suddenly gotten a lot clumsier. Damn it to hell.

  • Beckey, Did you see an improvement before the last few days? By the way I think the study is administering 1200 mg total per day or 600 twice a day. Don't go by what I'm saying but You might want to double check the clinical trial. By the way, I think doctors are required to say that. If you decide to keep taking it keep me posted I am very curious! Good luck!

  • Hm. Think I'll go back to 1200 total per day. Too much of a good thing can be a disaster.

  • Beckey I am starting back on it but very slowly because it was making me nauseous and sleepy. I am taking only 600 at bedtime. That already helped with the nausea. In a few weeks I'll add the second pill in the morning to get to 1200. Some people tolerated very well it seems hoping I can build up to that. Good luck and keep me posted!

  • I wonder if anyone out there is actually enrolled in this study? If so, please share your experience. The the clinical trial referenced above is testing at this amount:

    "1 600mg tablet 2 x per day (on days IV N-acetyl cysteine is not administered)" or 1200 mg / day.

    I was not able to get in the trial because they want local volunteers. I tried taking 1200 mg by pill and then went down to 600 mg / day but still had trouble with it (nausea).

    Is it working for those who are taking it? It looks like a great study link to the trial: clinicaltrials.gov/ct2/show...

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