First, I'm not recommending anyone else do this, just reporting what we are experiencing. Do your research, talk with your doc, and make your decision based on that. Of course, we didn't discuss this with our neuro, because we'd be speaking a foreign language (whole body health) and he only understands neurospeak.

We began last Monday morning taking 4 drops of iodine called Iosol, mixed in water, although you can put it in anything if you like. It is a combination of iodine, and ammonium iodide, both forms of which the body needs. Four drops gives you 7.2mg of iodine which is way more than the RDA but I personally think the RDA numbers are useless, so we don't go by those. We have friends taking 12.5mg of iodine (nonPWP) daily for over a month and they have not felt or slept as well as they are now in a very long time. They take Iodoral which is iodine and potassium iodide but I think the ammonium form of the iodide is superior, IMHO, so we take that. Potassium iodide is much cheaper to produce and is what is in table salt.

We increased to eight drops a day (4 in the morning, and 4 at night) around Wednesday and this is what we are noticing, it is damned odd because it is only Sunday:

1. constipation GONE. BM at least every other day. We have suffered with horrible constipation off and on for years so this is a really welcome improvement. Sorry if that offends anyone but hey, we have to be honest here if we're going to help each other.

2. sleeping longer and deeper. Instead of waking up 5 or 6 times a night and struggling for hours to go back to sleep, we are experiencing waking up only 2 or 3 times, which is awesome. Most importantly, we are sleeping through that critical window of 1-4am or 2-4:30am, which we have not done in quite some time.

Seems like the sleep is more restful, too, and some crazy, very vivid dreams. This is interesting to me because I've read a lot of PWP have REM sleep disorder and that is the phase where dreams occur, if I'm not mistaken, sooooo, I wonder if this is helping restore REM sleep? Whatever, it's good.

3. food and med interaction change: eating anything during the day for us would be a mistake, meds would not work well. Yesterday we ate Arby's roast beef in the middle of the day (the big protein no-no) and were OK. What? Yes, really.

4. more energy: this morning my husband got up at 6am and went walking, first thing in the morning. I thought this would wipe him out but no, he is doing OK. Tired, of course, but not flat out like I thought he would be.

If you do some research on iodine, it is an amazing mineral. I can't list all the things it helps but it is cricital for thyroid health and if you know anything about the thyroid, and many here do, you know it is critical to our health and well-being. Since so many here have had thyroid issues, or suspect as much....you might want to check iodine out. The source where I learned about this (a medical newsletter I pay to get) recommended a daily maintenance dose of two drops a day (which would be 3.6mg iodine) for healthy folk, 4 drops a day for a month or two for people whose thyroid is not working optimally. (You can tell if it is by taking your basal temperature every morning for a few days first thing in the morning, I posted about this a week or so ago).

I even read there are thyroid malfunction personalities, the two main ones being:

1. those who are up front and direct in their communication, and like to plan, predict, and have agreements so they know what to do and expect from others. these types are very stressed when agreements are not honored, or plans do not work out, and this can cause the thyroid to get out of whack.

2. conversely, those who are peacemakers, and like everyone to get along, and avoid confrontation whenever possible. these people will suppress articulating how they feel in order to spare the feelings of others or keep the peace. these types get stressed when inevitable confrontation happens and the thryoid will malfunction accordingly.

It is fascinating and all I can say is that we can definitely tell a difference since we have started taking the iodine. We have tried so very many things on our journey with PD and this is probably the only thing that has had such a noticeable impact in such a short time. I read of people taking as much as 25-50mg of iodine a day so the tiny amount we are experimenting with is practically a non issue.

I'm hoping the "R" members here (Rick, RLSmi, and Ron) will weigh in and tell us what they think!

I'll report again at week two and am hoping the improvements continue. Oh, you need to take selenium, Vit B complex, and Vit C, if you take iodine, because they work synergistically.

It seems that there are many "Pieces" to the Proverbial Puzzle that is Parkinson's. We each have many things MISSING from our diets due to "Promoting increased shelf-life and Profitability" of the foods in our time; as opposed to non-genetically engineered foodstuffs the vast majority produced 50 years ago. Is it so hard to imagine that going back to the Basics of vegetables and naturally grown grains would make all of us healthier human beings?

very interesting, thanks

We got hit with the flu and it really messes up any experimenting you are trying to do!

So far as we can tell, iodine is continuing to help with constipation and sleep. We stopped the iodine for a few days at the onset of the flu, and constipation promptly set back in. Resumption of the iodine took care of it. Of course, I'm not saying iodine gets rid of constipation, but I will say that when we take iodine, we don't have constipation. How's that for weasel-talk?

On sleep, it's still improved from what it was. No one in our family has ever had the flu in their lives, so getting it was a real shock. We had no idea something could knock you so flat for so long. The recovery for us has been very long and protracted, and it developed into a secondary bronchitis issue which we are slowly getting rid of. But even so, we are continuing with the iodine.

We are wondering if iodine might just help normalize an h. pylori colony? Simply because topical iodine (toxic if you ingest it) is used for cuts and scrapes, I wonder if the kind you can ingest has similar anti-bacterial properties. I need to look into this, there's just so little time and energy most days.

At any rate, we're still with it, so far, so good. We'll keep posting as the weeks go by.

As dopamine is a critical player in TSH (thyroid hormone) regulation, doesn't it stand to reason our thyroid function may be a little "off". While the research conclusions on the links between PD and thyroid disorder end up all over the place, patients in the form of case studies consistently show the same result: thyroid levels do exacerbate our symptoms.

I'm going to weigh in and say based on what Rick and I endured last summer, that the iodine treatment improvement you are seeing has everything to do with thyroid regulation. Many, many people have thyroid disorder; doctors only go by TCH "norms". Many of us show as normal, when in reality we are off. Doctors used to actually at one time diagnose thyroid by listening to our symptoms and looking at test results...now endocrinologists say rude things about us presenting with many different symptoms and referring us back tour brain doctor. (I think that the man was indeed suggesting hysteria). All I know is that my PD symptoms amped up over the summer at a time when I was away from work stress and should have been relaxed. It was to the point where I was beyond typical PD freezing; my legs were extremely week and I could not walk, Sinemet would not help it but I would stabilize a half hour to two hours later. Rick had a similar thing going on.

We surmise it is an insulin crash of some sort (which food does factor in somehow) and/or untreated thyroid dysfuction. Here is what is known about PD and thyroid:

Many people with PD have thyroid dysfunction.
Chronic use of levodopa does alter thyroid hormone levels, so test results alone very hard to interpret.
Longterm untreated thyroiditis has actually been mistaken for PD....especially with constipation, brain fog, tremor....
Treatment of thyroid has greatly improved PD symptoms.

A couple of really solid resources/referecences:

Linus Pauling Institute report on Iodine

Pubmed is replete with case studies on thyroiditis and PD; here are a couple free full text articles to get you started:

Hypothyroidism concealed by PD.


Resolution of Dyskinsia and On/Off Phenomenon in thyrotoxic patients with Parkinson's disease after antithyroid treatment.

Thanks for those links, yes, the medical newsletter where I got my "ah-ha" moment mentioned how many people may have a thyroid issue and not know it, and how useless the traditional tests for it really are.

In the meantime, our non-PD friends who have been taking twice the iodine we do are still sleeping great with more energy and no side effects whatsoever. I would never have thought that they had an iodine issue nor did they but their attitude is "we feel better and it's not hurting us, so...." I am very well aware of placebo effect and realize how strong it can be, but at the same time one cannot deny the flush of the toilet on a regular basis where that was a rare sound before the iodine.

Clearly I have much to learn about this, and yes, oddly, food has a huge impact for us as well. How it all ties together is what I need to try and figure out, if for nothing else than to manage the symptoms better.

I have begun to question everything. A particular question that I am using a great deal is, "Is this really a side effect of the drugs, a symptom, or is this an overlooked cause"?

For example, from as far back as I can remember (age four or five) I have been "marinated" in stress hormones. Cortisol and adrenaline have been constant companions - the former a result of chronic stress and the latter of acute stress. Those two chemicals are very destructive when encountered everyday. How could they not be relevant? And what of PTSD? We know that that trauma can totally reshape a trained soldier. Are the terrors inflicted upon a child any less formative?

What of the hormones themselves? We know that they can destroy healthy neurons, but to what extent? We know that they can take over certain signaling functions from other neurotransmitters, but to what effect?

And how about dopamine? How do stress hormones affect it? Increased levels? Decreased? And what of the receptors that complete the equation? Does stress interfere? After 50 years of it?

What of stress itself? Would you know that you were pumping out harmful levels of hormones if it had always been that way?

How would 50 years of this impact the substantia nigra? Might it kill neurons? Might it destroy or block dopamine? Would we know?

I grew up a stoical little soldier determined to protect my family from my drunken father. To function in that terror I built a great wall around me and convinced myself that nothing lay beyond. I would be a fool to say that was irrelevant.

Stress hormones blow us away in seconds. There is no change in dopamine levels in that short time. And, yet, we become helpless. Why? And what version of the acute scenario plays out on the chronic stage?

lurk, I apologize. That is one thorough thread hijack!

Rick,

your post gives new meaning to the old adage "All roadds lead to Rome"

its the forest for the trees syndrome....the ........ m a t r i x do dodddodododdododoodddododoodo

if it is true that the whole is greeater than the sum of its parts - that we are all a sort of hologram - that in a single cell of oour body can be found the blueprint for the whole of it ...well then ...what does that say about our humanity? and free will? whose steeering the ship?

Rather than further hijacking, how about "Deep waters"? See you there...