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12-27-2013, 11:21 PM | #1 | ||
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I'm looking to see if anyone has seen the PD videos on YouTube of Dr David Perlmutter's patients who had IV Glutathione treatments?
The results seem pretty interesting, patients who had difficulty walking, turning 180 degrees before the IV Glutathione treatments seemed to show pretty marked improvement about 30 minutes after the treatments. I am reading Dr Perlmutter's book called Grain Brain which points to a number of studies indicating low fat diets may be significantly contributing to a number of neurological diseases, including PD. He is also researching the effects of eating gluten free but low carb diet. I'm interested to hear what others in this forum may have experienced if anyone has tried IV Glutathione. |
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12-28-2013, 09:38 AM | #2 | ||
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Magnate
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i've tried it, didn't help at all. i didn't do it thru perlmutter, got my neuro to write an rx for all the equipment and got the glutathione from a compounding pharmacy, had a nurse friend start the "push" IV and i administered it.
university of s. florida did a clinical study showing it was no more effective than placebo. http://www.ncbi.nlm.nih.gov/pubmed/19230029 youtube videos have no policeman validating them. pharmacies can make a fortune selling IV glutathione, insurance doesn't pay for it. are those videos phonies? dont know, but there is a huge placebo affect with pd. give someone a 100mg sinemet tablet who has been OFF and they would look just the before and after in those videos. perlmutter is very convincing but if he had so much confidence in IV glutathione why hasn't he tried to get funding to do a study, hauser did. as far as gluten goes, there are countries where wheat is a staple, such as egypt and other middle east countries, i don't see any higher incidence of neurological diseases in those countries. perlmutter promotes perlmutter imho. just my opinion. italians eat pasta everyday which is really high in gluten, higher than bread. my layman opinion is do what researchers recommend, follow the mediterranean diet. and do more than just accept whatever perlmutter says, research both sides. i can't believe PBS had him do a special which they use to raise funds. bottom line, think about it, if IV glutathione really worked that well, we'd be doing it. you mention any supplement on this board and it gets researched on the internet. pd'ers pay $200 copays for azilect, they would shell out the money to pay for IV glutathione. the drug for the duodopa pump costs $65,000 or more/year. there is a tremendous market for any kind of pd treatment for advanced pd'ers no longer responding well to sinemet, there is money to do clinical trials for alternative treatments that you can't patent yet IV glutathione gets no attention except for perlmutter and i imagine some other docs. there are very wealthy pd'ers who would be using this if it works and plubicizing it if it did and there are none. there is a researcher who did a study on nasal glutathione at bastyr university but hasn't published her results. http://clinicaltrials.gov/show/NCT01398748 Last edited by soccertese; 12-28-2013 at 09:39 AM. Reason: grammar |
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12-28-2013, 11:29 AM | #3 | ||
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Thank you for that info. I do know that anything goes on YouTube, so I was skeptical of it as well. If it did really work that well, there would be more publicity on it.
My mom was recently diagnosed with "mild" PD a few months ago, but does not seem to be doing that well on Carbidopa/L-dopa. She is significantly worse in the last 2 months, so I decided it's well past time we start researching this disease so we're better able to work with the doctor. She's having a great deal of difficultly walking, getting out of the chair, etc, and I'm afraid she's going to get a bad fall and break a bone one of these days. I'm glad that I've found this forum. Thanks for your comments! |
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12-28-2013, 01:00 PM | #4 | ||
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Magnate
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Quote:
i suggest instead of trying to research alt treatments for which there is only unsubstantiated testimonials, you try to get the best conventional drug regime for your mom, which means adjusting dose and timing of C/L. Of course exercise and nutrition are important but from my experience as someone with advanced pd, i don't feel like doing anything mentally or physically when my C/L wears off. of course getting a 2nd opinion never hurts to make sure she has PD and if that is the 2nd opinion then what medication schedule do they recommend. I suggest you buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK by AHLSKOG, it goes into great detail on medication decisions. it's a great starting point if you meet with your mom's neuro. C/L is a great drug when it works but you have to be diligent in taking it at the same time everyday and keep in mind that it's effect can be negated by protein taken at the same time and only 5-10% of the l-dopa gets to the brain, the rest is broken down and can't pass the blood brain barrier. so constipation, dehydration, protein in food and supplements can cause more l-dopa breakdown as it takes longer to get to the BBB. And you have to be proactive with neuros, they are incredibly busy. |
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"Thanks for this!" says: | Betsy859 (12-29-2013) |
12-28-2013, 07:25 PM | #5 | |||
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Seems much too fast a decline for your mom. Has she been assessed for other neuro entities such as Normal Pressure Hydrocephalus? I recall balance/walking deteriorating for those patients. Best wishes for your mom, madelyn
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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12-28-2013, 12:00 PM | #6 | |||
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I tried acetyl glutathione:
"Acetyl-Glutathione is a novel oral glutathione formulation that is stable in the stomach and gastrointestinal tract, well absorbed, and able to enter the cells directly and present to the cytosol for mitochondrial entry." I didn't notice any benefit though I suppose it might be better for neuroprotection than symptom abatement. Now I take a lot of l-cysteine, one of the building blocks of glutathione.
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Born 1948. Diagnosed 2011. DBS ON 7/17. Taking cd/ld 200 MG at 6 am, 9 am, 12 pm, 3 pm, 6 pm and 9 pm. Finasteride 5 mg, Life Extension Mix and Once-Daily Health Booster, Mitochondrial Energy Optimizer with BioPQQ, Optimized Curcumin (longvida), Triple Action Cruciferous Vegetable Extract with Resveratrol, Vectomega-3, Vit D3 5000U,Lithium orotate 5 mg, AMPK Activator, Kefiran, N-Acetyl-L- Cysteine (NAC), Tri-Magnesium, Advanced NeuroPro, Duozyme, Palmitoylethanolamide (PEA) Updated 9/21/17. |
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12-28-2013, 12:46 PM | #7 | ||
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slb340,
Welcome to the forum. I am not a doctor, so make of what I write as you will. Every PWP is different, but: IPD normally progresses slowly over the course of, perhaps, 20 years. Sometimes another illness, like the flu, leads to a step-change in the PD. IPD normally responds well to levodopa (at least for a few years). To go from "mild" PD to the stage where walking is difficult in just a few months is unusual. I suggest your mom sees her GP about her general health and her neurologist about the diagnosis. Has she had a MRI scan to exclude other conditions such as stroke? IPD stands for idiopathic PD: PD of unknown cause. This is what is normally meant by just "PD". There are many other illnesses which at least to start with have similar symptoms, e.g. vascular parkinsonism. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | dilmar (01-16-2014) |
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