Hi. I'm not new, but have been content to mostly "lurk" and soak up info 'til now. I'm contemplating meds for the first time. I've ruled out dopamine agonists for now--I'm put off by the side effect possibilities. I'm weighing MAOB inhibitors vs C/L. Assuming effectiveness isn't an issue--after all, I'd simply move on to something else if it didn't work--are there downsides to MAOB inhibitors vs C/L?
(Symptoms 2015, diagnosed 2019, tremor dominant, 1500 mg B1 daily)
Thanks so much!
Have you considered having a genetics test to see if your MAO s are running slow or fast? I wouldn’t take an MAOI if yours is slow anyway. It costs a bit and its pretty new science but if you can afford it it is interesting anyway.
Plus I am not so sure its as easy as moving on to something different if it doesn’t work as they can be difficult to get back off again.
I've never had any trouble halting an MAO – B inhibitor. But then again they've never done much for me either.
Thanks--I hadn't heard about that as an option.
You need to find a integrative medicine doctor who can get an opus23 report done for you. We had to get a DNA test done with 23andme and ancestry.com and they run it through their analysis program and the doctor goes through the analysis. It gives you a list of mutations that you have one or two of and then will tell you what conditions are associated with various ones. Eg it might say 35% of people with this condition have this mutation so it tells you if you have a tendency towards something. But just because you have the mutation it doesn’t mean you will develop it as lifestyle, diet can be protective. At the end it gives you a list of foods, herbals and pharmaceuticals that you should avoid and foods and herbals you can eat to support your body.
For example my husband has rs6323++ which they say means he is slower to breakdown neurotransmitters like dopamine, norepinephrine, seratonin . The consequences are a lower expression of mao A. It is associated with catecholamines, methyl trapping, response to antidepressants (risk). He should take vitamin d, b2, quercetin, berberine. Foods adzuki beans, almond butter, black beans, .. etc there is a big list. Avoid curcumin, estrogens, androgens, encourage progesterone.
So to me that would suggest avoiding anything that further slows the expression of maoA.
But they don’t know everything yet so there may well be another gene that they don’t identify which has been pulling the other way keeping him in balance in his early life so these things don’t stand in isolation.
Having said that the doctor is bemused and the psychiatrist refuses to take any notice as he says it’s unproven science. But I find when I look at how various things react and which conditions he has had the genetics test seems to predict quite well in his case.
Take a look at this summary of various gene types and their role and how mutations affect health and how to support them. You could just get the DNA files yourself and look up your own SNPs in this report to see what you have.
detoxnutrition.com/wp-conte...
Clearly it's a more layered issue than I knew--thanks, LAJ!
Have read maob can delay the need for c/l. 9 months on average. Im sure that varies widely.
Thanks, Bushpilots! I'm hearing from some circles--my Vandy MDS and some folks here included--that delaying c/l doesn't really buy you more efficacy on the back end, so it has me wondering about the value of starting with MAOB if c/l delivers more effectiveness.
My neuro started me on c/l to confirm my diagnosis. The c/l was like a miracle. All my weird maladies cleared up and I loved it. Then the neuro took me off the c/l and put me on Rasagiline (expensive). The Rasagiline wasn’t the miracle that c/l had been and I asked him if I could add back a bit of c/l which I did. Long story short, I recently ditched the Rasagilne because I thought it might be causing a bit of my fuzzy brain and I am taking c/l for the PD, gabapentin for neuropathy, Flecanide for Afib and an aspirin. Personally, I believe all my issues are related to my PD. All the symptoms started coincidentally at the same time. Or I should say, reached a crescendo at the same time, including osteoarthritis. I was diagnosed at 55 and am 61 now. Prior to diagnosis, I hadn’t had a good night sleep in 30 years. Some of my fuzzy brain has cleared since ditching the Rasagiline. And I believe my dynamic dosing has been real helpful to how I feel now and is responsible for my sleeping through the night 8 hours (every night)! The sleep is my blessing and so I am grateful for the diagnosis (finally) because the cocktail that I am on now is working for me. I am not sure for how long but the contrast to how I felt before is amazing.
Thanks, PalmSprings--why did your neuro take you off of c/l in favor of Rasagiline?
My neuro is not the most chatty guy but I assumed that the consensus was in the early stages to use Rasagiline because it was thought (perhaps erroneously) to slow progression. And also (perhaps erroneously) to delay the use of c/l and/or to use c/l sparingly to stave off side effects from long term use or over use. But now with my extensive reading, I believe in getting relief from the disease as soon as possible and ride the wave. Enjoy yourself while you can and while the meds work. As the disease progresses, nobody knows how fast or slow that maybe for any individual. From my reading of the most up to date reputable studies say that c/l doesn’t cause the symptoms, the diseases causes the symptoms and c/l gives relief and the dose may increase until the disease doesn’t get as much relief from medication as it used to.
Sounds like the right approach--thanks again!
Yes, new school thinking is that quantity of dose plays more a role in dyskinesia than length of time on meds. If mao_b lowers needed c/l dose then maybe its helpful. Also maybe neuroprotective to some degree. Who is your vandy mds. I am in the western part of state.
Dr. Nagy--good guy, very thorough.
Tyvm
Hello Sailaway615. I recently started C/L. Diagnosed 14 months prior. Followed Dr Mischley's advice and skipped agonists and MAOIs and went straight to C/L. Could not be happier that I followed her advice. Symptoms nearly reversed. Workout strength and speed restored immediately. Wish I hadn't waited so long. Now, I just have to hope the good results last. Good luck.
Yeah, I'd like my running speed/intensity back for as long as possible. I value Dr. Mischley's input. Thanks!
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