New Doc Update

I saw a new neurologist Monday, here in Marble Falls. Bottom line, I'm happy with him. Not only is he in town, so no more 2 hour drives each way to Temple, but he has dealt with this for a long time, was knowledgeable on recent developments, did more tests, and is considering more options than my previous neurologist.

By way of example, my previous neurologist didn't have MAO-B inhibitors on her "go to" medications. She said because she didn't feel the benefits to side-effect ratio was good. She pointed to diet restrictions as evidence of a difficulty using them.

MAO inhibitors essentially inhibit the production of an enzyme. MAO-A inhibitors are used in psychotic diseases and have significant diet restrictions to avoid the chemical tyrosine, which can cause hypertensive reactions among other issues when MAO-A is present at the same time. MAO-B inhibitors, however, don't have those restrictions on diet. But when they came out, the FDA automatically gave them the same restrictions as MAO-A inhibitors. Later, as evidence was accumulated that the B version didn't have the same risks as the A one, the FDA relaxed the dietary requirements on MAO-B inhibitors. By inhibiting the MAO-B enzyme, which breaks down dopamine in the body to get rid of older dopamine molecules, it allows the dopamine in your system to hang around longer. That makes any dopamine produced by your brain cells still alive to work longer, as well as any taken in the form of Sinemet--the main drug used in PD.

One MAO-B inhibitor has been around for a while. At one point it was thought to have neuro-protective action, but was not proven to be true in the end. However, 10 years ago a new form came out with the brand name Azilect. It has shown evidence of slowing down the progression of PD. The first med to do so. All others treat symptoms only.

There is your PD lesson for the day. All that to point out that my previous neurologist didn't appear to know about MAO-B inhibitors not having the same diet restrictions as the A version. It was obvious she wasn't going to prescribe any of those. I thought we should at least give them a try and see, but she didn't seem to be open to doing that.

Not so with the new neurologist. He first went through a list of meds and asked me whether I'd taken any of them. The list was longer than I expected, and I could say no to them all because the only ones I'd had was Sinemet and a dopamine agonist. Then he ended that by giving me a history of PD meds, like what I'd read and given above, and ended that he'd like to prescribe Azilect for me. I didn't even have to bring any of it up. And through his presentation he described the diet restriction issue that I've detailed above.

The result being he has been dealing with this since the 60s, knows his stuff, and is open to finding the best med mix among a wide array of options instead of the narrow range of the previous neurologist. And he is not only willing to prescribe a MAO-B inhibitor, he brought it up as the first option to try. So I'm feeling a lot more confident that he can help me.

The down side is that Azilect is still under patent, which expires in Feb. 2017. Until then, there is no generic equivalent. Which means the medication is expensive. Looking on line, a 30 day supply retails just over $600, and with discounts will go anywhere from the upper $400s to the lower $500s. IOW, a month's supply would be more than our car payment.

Upon telling him I didn't have insurance to cover that, he pointed me to the company who has patient assistance programs. After searching, I found the qualifications and form to submit, which based on their info I should qualify for, I can get it for free. So I've filled out the form and sent it to the neurologist, he's filled in his part. I'll pick it up today and fax it into the company with my proof of income. Not sure how fast they'll process it and I'll get it if approved, but I'm hoping I'll have it by the end of next week. We'll see.

Aside from that, he confirmed the previous neurologist's diagnosis that I have PD. He said something along the lines of me fitting the standard characteristics, so for him, there is no doubt that this is PD, and not some other disease that mimics PD symptoms. 

So it appears I'll get to try out this med and see how much it helps. I'll keep you updated. I'm going back to see him again in February.

Until I have more info . . . bye.

Medication Experimentation - Part Two

I continued my research. Before I started taking the Sinemet again, I ran across an article claiming that magnesium--ideally magnesium chloride--would reverse the progression of PD symptoms. A scientific basis was proposed--another theory. But again, it wouldn't be costly to give it a try, at least for a month, since it was safe to do so. So found and ordered some, 520 mg pills, and started taking them 10/1/13.

I took them until 12/10/13, when the bottle ran out. I didn't feel they helped symptoms. That's not to say they weren't helping in other ways, but I had no way to tell that. The claim was it would reduce symptoms. It didn't.

More research pulled up an article with a lot of suggestions. Evaluating them, I ordered and started taking the following supplements on 10/25/13:

• Ginkgo Biloba: helps blood flow to and health of the brain
• Tyrosine: used in the production of dopamine
• Acetylene-Cystine: supposed to help offset toxic chemicals/processes in the brain.

Two days later I stopped taking Tyrosine because I discovered it interfered with the effectiveness of Sinemet, just like meat protean does. If I had been smart, I would have taken it at some point between does so it wouldn't interfere. But at the time I just stopped to see what the rest did.

So from 10/15/13 through November, I was taking in total: Sinemet, Ginkgo, Acetylene-Cysteine, and Magnesium Chloride. Through that time, I couldn't tell that any of it helped my symptoms other than the Sinemet, and that only partially.

My first visit with the neurologist happened at the end of November. That's when she confirmed I had PD and had a CAT scan done to check for strokes or other brain problems that could cause those symptoms. The CAT scan showed I was "normal." At least someone thinks I am.

The neurologist wanted me to try an alternate medication to Sinemet. The brand name she prescribed was Ropinirole. It is a dopamine-agonist. In short, instead of adding more dopamine into my system, it stimulates the dopamine-producing neurons to produce and receive dopamine.

So 12/1/13 I stopped taking Sinemet and 12/2/13 was my first day on Ropinirole. Unlike the Sinemet, I had more side-effects from it. The first week, the most noticeable side effect was dizziness. But it was a very specific action that caused it. When I'm in bed, and I turned to my left side, the whole room would spin and I would feel like I wanted to throw up. As I understand it, it has to something to do with lowering your blood pressure, which is why you work up to a full dose. She had me go at least one week on a half-dose before taking the full dose. But I didn't experience dizziness at any other time, and the room-spinning passed before one week was out.

The only other side-effect I experienced was drowsiness. I could stay awake, and I didn't have much trouble driving, but there were times I could tell my reflexes were dulled. Waking up in the mornings was harder. I felt groggier waking up for longer than usual. Overall, during the day, I simply felt slightly tired all the time. But my body adjusted and I got used to the drowsy feeling so that I didn't notice it much.

The neurologist said to stay on the half-dose if it did the job. By the end of one week, I could tell it was helping reduce symptoms, but not as much as the Sinemet did. So I went up to the full dose the following week. After a few days on it, it felt like it reduced symptoms as much as the Sinemet. So I ended up on 12/9/13 taking .5 mg three times a day. I've been taking it up through yesterday. More info on that later, but today is my first day off Ropinirole.

During this time, I stopped taking the magnesium chloride and the acetylene-cysteine when they ran out. I ordered more of the Ginkgo since that is well established to help brain functions, and I figured I could use all the help I could get. So by Christmas, I was taking Ropinirole and Ginkgo, along with my multivitamin and fish oil I'd been taking all along, even before getting PD, along with the coconut oil in my morning oatmeal.

My next neurology appointment was in January 2014. Upon further evaluation, she decided to add Sinemet back into my medicine alongside the Ropinirole. So on 1/14/14, I resumed taking the original dose of Sinemet. To date, that has gained me the biggest relief from symptoms to date. Even at church, while I would shake some and feel rigidity in my left arm and fingers, it was minimal compared to what it was before. Much more manageable.

That above cocktail of medicine and supplements is what I've been on since 1/14/14 until yesterday. The refills ran out on my Ropinirole. I could have called the doctor and got more, but the additions I'm making this week based on research caused me to decide to go off it, and see if these other changes could compensate.

They may, however, have a slow build-up effect. In that regard, this isn't the best time to stop taking it. Next week is Holy Week, and I'll be chanting extra services that are special and long. Which means added stress. If my new plan doesn't kick in right away, or at all, next week could be difficult.

What is my new plan? Two pronged. First, I'm going on a special diet that is supposed to benefit the mitochondria in the brain cells. Mitochondria manage energy production in cells. So the diet attempts to have you eat foods that benefit them, and avoid foods that hurt/hinder them.

The core of the diet is to avoid processed foods, sweeteners, breads, dairy, and unsprouted grains and beans, and instead eat three cups of green vegetables, 3 cups of sulfur vegetables (cabbage family, onions, and the like), and three cups of "colors," vegetables and fruits with color like berries, red cabbage, etc. Plus some protein from free-range, grass-fed, wild-caught chicken, beef, and fish respectively. Since we are fasting from meat during Lent, but shellfish is allowed, most of our "meat" protein comes from shrimp, and occasionally scallops or clams. Also supposed to have one serving of organ meats like liver, heart, brain, tongue, etc. If you're interested about this diet, do an internet search on Dr. Terry Wahl.

We started this diet this past Monday, 4/7/14. There are reports from people, one we know, that this diet--originally developed for autoimmune diseases like MS--has reduced symptoms significantly. One lady we know who has PD reports before the diet she couldn't safely drive. After a few months, she now can again. But this isn't something I can expect will help me out this coming week. In two to four months, I can probably give you an update on how it is helping, or not as the case may be. In a year, I should know for sure if this is something that can help. Even if it doesn't, it will at least have me eating a lot healthier.

The second addition is a new list of supplements that have been shown to help brain functions. From that info, starting 4/10/14, I've added the following to what I'm already taking:

• 1 g. Tyrosine: taken in the middle of the night to keep from interfering with the Sinemet.
• 400 mg. Vit B6: a key vitiamine needed by the brain for healthy dopamine production, also taken middle of the night with the tyrosine, for the same reasons.
• 1040 mg. of Magnesium Chloride, again: helps with proper functioning of brain neurons.
• 2 g. Vit C: free-radical fighter, to deal with radicals hurting the brain.
• 1000 mg. Grape Seed extract: another free-radical fighter. It was either this or Vit E, and Dr. Furman warns against getting too much E, as it can negatively affect health.

These too might take a while to have an effect. But I'm hoping that will happen in a week's time, by which I'll be going into my heaviest chanting part of the week. If not, I may be on the shaky side. But I hope to find out whether this is helping within a month's time.

One other change I started two and a half weeks ago. I read about some early testing done on fruit flies and mice that the "artificial" sweetener mannital has been shown to reduce PD symptoms. It is a long ways from becoming an approved treatment, but I figured why not use it as a sweetener? But it isn't sold retail much. It is mostly used to coat candies to give it that cool feeling in the mouth. And it is also prescribed for children as a laxative. But I read it could be taken less than 20 g. a day safely. Whether that would be enough to help PD, who knows. But it could build up over time, can't hurt as long as I don't take too much a day, and helps with the PD constipation anyway. Win-win in my book.

So as of 3/28/14, I started taking 4 teaspoon in my oatmeal each morning, providing around 16 g. It has half the sweetness of sugar, so you have to use twice as much. My only problem may be if one of these solutions does work, I may not be so sure which it is. At any rate, my next neuro appointment is in July. By then I should be able to tell if any of it is helping, and if not, have her prescribe the Ropinirole again.

Starting today, however, the only prescription I'm on is Sinemet. The nice thing will be more alertness. But at least in the short term, more shakiness, rigidity, and pain. It will be a blessing if these supplements do the job.

That pretty much catches us up on my medication history to date. I do want to go into other types of treatment in my next post. But it will likely be sometime after Easter before I'll do it. With taxes and Holy Week, I"ll have my plate full for the next few days. Until then...