NAC, update

[zawy]

As always, I try different things at the same time so it is hard to judge. This time I took 600 mg NAC twice yesterday thanks to Park_bear's recent post and it was the best day in 2 months. The confounding factors are: I stopped my 7 cups of coffee (1/3 cup of coffee grains in 16 oz) per day due to excessive anxiety and feeling ill and confused about 5 days ago. At that time I also started taking very small doses of an SSRI anti-depressant Zoloft, 5 mg/day. Both of these things have major effects, but yesterday was a leap ahead of my expectations.

I previously bought a pulse oxymeter to measure blood oxygen ($15 Amazon) also based on Park_Bear's suggestion and noticed I was consistently low at about 92 to 95% when people around me were almost always >96%. Also, in playing with the kids and showing them blood under a microscope, I used my blood and my wife's blood. Without thinking about it, we marveled at the time at how much redder her blood was, seeming to have a higher red blood cell count. After months, I finally asked myself how can I get this higher? Doh, iron. Maybe I blocked this thought out in the past because it is part of the complex process that causes damage in PD, and the vast majority of supplements that reduce PD in animal tests are iron-chelators (caffeine, nicotine, gallic acid in black tea...seemingly every PD supplement I checked). However, there was this one annoying abstract seeming to go against the few other abstracts concerning iron that indicated higher blood iron had the least incidence of PD, something like 11x fewer cases which has to be an error, and the wording or my reading of it may have somehow been backwards. So I took a double-dose of iron for a week and single doses since then and the oxymeter has consistently read 96% to 97% since then (2 months?). I checked my blood tests from the past two years and my RBC and iron were indeed borderline on the low end. That seemed to help a lot but then problems returned, which I have now largely identified as a caffeine overdose.

Consistent with the low-iron theory, I have had a strong feeling I was missing something in my diet the past two years, but never specifically felt like eating dirt (clay?) which is a symptom of low iron, at least in cultures that teach it. But as many of my previous posts show, I constantly felt like I was not getting enough oxygen to my brain except during exercise.

I also take nilotinib off and on and the jury is still out for me. That's another confounding factor, along with not being able to be consistent with exercise.

I have not been diagnosed with PD, but have a thumb tremor, no sense of smell, persistent anxiety, essential tremor during emotional stress, and days of confusion and inability to concentrate. Strangely, my balance is better than it was two years ago.

More consistent with non-PD neurological issues, I have absolutely no sense of thirst. (I've also recently started taking salt which I usually never add to meals).

[Bailey_Texas]

Go to the Doctor.

Find out what you have.

Anything you post should not be used or considered by anyone here.

[zawy in reply to Bailey_Texas]

About 15% of patients diagnosed with Parkinson's is not Parkinson's. Up to 35% diagnosed with PD did not have Parkinson's based on autopsy. 20% of those with Parkinson's are being diagnosed with something else. Being in the initial stages, any diagnosis for me has a much higher error rate. The only known effective treatment in delaying the onset is exercise which is applicable to pretty much all neurological conditions. By your reasoning at least 15% of posts here should not be used or considered, but you do not know which 15%. I've been to 4 doctors, had 2 blood tests, and an MRI. Getting on the merry-go-round of doctors and tests has gone far enough for me at the current time, especially since there are no treatment options I have not already implemented. The doctors missed the low RBC & iron, and the low oxygen. Doctors are not Gods meant to decide everything for us, and we should not be like mindless cattle depending on doctors for all of our decisions and care. Most of my posts are not related to my particular experience, but are summaries of the medical literature concerning various aspects of PD.

[Bailey_Texas in reply to zawy]

When you went to the DRs what did they think you have. And what meds have you taken.

[zawy in reply to Bailey_Texas]

They did not give a diagnosis.

I have taken rasagiline (beneficial, but it's an MAO-I which can improve mood), tested L-DOPA (no effect), tried bupropion (increased jitters and anxiety a great deal as 2 or 3 others indicated despite papers suggesting its use), and just barely testing Zoloft for mood.

Based on the L-DOPA, PD is not indicated, but "not indicated" does not mean PD is not present. It just does not meet a common criteria, which has 20% false negative error.

Lack of smell, balance problem, and anxiety are the 3 monst common 1st symptoms and are my primary concern, showing up before a minor tremor that gets worse with stress, and gets better with alcohol, consistent with PD.

[Hikoi in reply to zawy]

Zany

I believe you will find that most of those misdiagnosed will have a more serious Parkinson plus condition which can take time to diagnose or they have essential tremor wrongly diagnosed.

Lack of smell, balance problem, anxiety and a tremor that gets worse with stress, and gets better with alcohol, are all signs of essential tremor, alcohol does not make PD tremor better.

[zawy in reply to Hikoi]

My tremor is a resting tremor, which wikipedia seems to say is not essential tremor. The videos of people with ET do not seem like mine. PD patients look like I feel.

[zawy in reply to Hikoi]

I've said in the past I have essential tremor symptoms. But now after looking at some videos, that may not be the case. The symptom I thought was like "essential tremor" is a trembling of the lips and chattering of the teeth that comes and goes in cycles like a month on then a month off. It appears to be related to the resting tremor of my thumb(s).

[p-oui in reply to Hikoi]

Hikoi, you are so well read and I came across the same info you cite, that a tremor that improves with wine is ET and not PD. Alas, I have had each one of the 3 movement disorder specialist neurologists tell me that is not correct. Wine improves my tremor, at least for now, and I had hoped it would be "proof" that I had ET.

Zawy, I was most struck that the Ldopa had no effect and would imagine a datScan might be helpful too. I hope you see a movement disorder specialist neurologist who can provide the insight you need.

[Hikoi in reply to p-oui]

Oiur

Yes I somewhat agree with you about tremor. It is not as clear as my post suggested.

For eg:

epda.eu.com/en/pd-info/symp...

epda.eu.com/en/research-pap...

[p-oui in reply to Hikoi]

Hikoi, thank you for sharing these links. It is complicated isn't it? 3 of 3 movement disorder neurologists all agree I have PD yet the third from Cleveland Clinic RX'd a datscan. I wonder if it is really necessary now but your links remind me of my quandary when I was first reading about tremors. I truly hoped for ET but no one is buying it.

Hope you have a nice weekend. It is pouring rain here in Florida.

[silvestrov]

I have the beta thalassemia trait & take carbonyl iron because it is non-toxic. Otherwise taking vitamin C helps with the absorption of iron. Adding a lemon to tea prevents the chelation of non-heme iron from the body. Like many people on this site I take theanine for anxiety and it has been shown to be protective in PD and Alzheimer's studies. Have you ever tried taking some form of levodopa supplement? After viewing my father's (bad) reaction to standard PD therapy I did not see a doctor when I manifested symptoms but found myself to be levodopa responsive. Being L-dopa responsive is portant because there are forms of parkinsonism which are not L-dopa responsive.

PS. I just read your post saying you are not responsive to L-dopa. But your symptoms certainly look like PD. PD is a head scratching, trial and error disease with variable symptoms and reactions to therapy. Truly a strange disease.

[Hidden]

It is my understanding that the benefit of N A C is to flush out the toxins in your body. I would not think that it would make you feel better. Not on the first dose.

[oceanflower]

Hi Zawy,

I also bought NAC due to reading Park-Bear's post, but won't try it until today, as it is hard to know what helps if you are trying two or three different things at a time.

This week I encountered the same problem of too many variables, and I'm not sure what was responsible for an improvement for a day. For example, last weekend when I ate some papaya at my friend's brunch party, I noticed that my mouth felt normal, and usually my mouth feels dry. I recalled a post from "Auntie Bean" a few years ago that suggested papaya helped PD. I I decided to experiment with it this week and have 1/4 of a papaya for breakfast each day. I did notice a difference in the middle of the week - I felt great - not as stiff, my gait was not as off, and I felt generally happier the whole day (and it was especially surprising because I had no time to exercise, which has been a major focus lately), but then I realized I had devoured a nice angus steak the night before which I had been craving! I wondered if the papaya enzymes or if it was something about the steak I ate. (Iron? or protein?) I suspect I have low iron. Something to investigate!

And then I'll do a new self-experiment on using just papaya,(along with my sinemet of course) and then - the following week try another experiment using iron supplements!

And finally, back to NAC - I'll try it out and let you know. My health food store owner had never heard of PWPs using it, so I told her I'd show her the info that Silvestrow researched.

[Hidden in reply to oceanflower]

At Costco I saw chocolate covered papaya. I will pick some up and try it. Mmmmmmm Chocolate aaaaaaaahhhhhh

[p-oui in reply to oceanflower]

Look forward to hearing how the NAC goes!

[oceanflower in reply to p-oui]

Hi Oiur

I will let you know after 8 weeks, since doctors usually say give it that long before jumping to conclusions. So far so good, but the first day really was the most amazing one so far! I'll keep you posted.

[p-oui in reply to oceanflower]

oceanflower, just wondering, how is it going with the NAC?

[oceanflower in reply to p-oui]

Hi p-oui,

I must confess that I have not been a good scientist lately...I have had a really bad cold (or two?) over the past month, and have not been on the ball taking my supplements regularly. (I know, I know...I should have been more attentive, and been diligent about my supplements, but my brain feels more damaged than usual when I'm sick!!) Now that my health is almost back to "normal", I'll try taking 2 500mg capsules a day. I'll keep you posted! How about you? Still finding it makes a difference?

[p-oui in reply to oceanflower]

I had difficulty with NAC including sleepiness and nausea. The nausea for me was pretty bad. I probably need to get there by increasing my dosage more slowly. I'm very curious what benefits others are seeing. Keep me posted!

[p-oui]

oceanflower, thanks so much! here is a link to the study: clinicaltrials.gov/ct2/show...

Enjoy the weekend

[park_bear]

Just saw this. Thanks for the kind words : - ) I have classic PD diagnosed by neuro. and stress certainly makes my tremor worse. By all means take it easy on the coffee if you have anxiety!