Okay I am confused too - Mom is taking sinemet with mirapex- then we started mucana ( a few doses a day) . The added NAC, and after that ALC and ALA - she has thyroid issues also //
Lastly just introduced mannitol - 1/4 teaspoon with tea .. she has a horde of other meds also ..
Today she wasn't doing good , tired, eyes closed so I asked my dad to take her to ER even if it is just to check her vitals - I am on the other coast and feeling so helpless.,
My question is could any of these have cause some other stuff - she has gained weight , so now she also has cholesterol issues , while the Thyroid wasn't too bad ( meds were doubled a few months ago ) - but research says ALA affect T3-T4 conversion - so it will affect thyroid right ? Is this true - just when you think it is good , could it be causing other issues ?
Are there any other side effects we should know about ?
It also says you have to careful about blood sugar levels coming down - could that be causing this no energy - eyes half closed state ?
Did any of this cause weight gain ?
Can the sugar in manitol cause any issues- she is only taking 1/4 teaspoon
So confused ...
Also, I know it doesn't matter for PD - but ALA and ALC can cause hair loss too - I started taking it for neuropathy when I just read this .
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Physician gerontologist, reputable Nutritionist, Pharmacist (offer to pay the Pharmacist so he will be motivated to dig deeper). Her health is too important to depend too heavily on us Parkies with all our "miracle" pharmacology. So many, many different paths makes one wonder.
I understand - but most docs don't know anything about the alternative world. They will say give up - Parkinson's is a degenerative disease - but I don't want to give up - wish I could find an amazing naturalistis healer .
you are right that on Dr know any thing about alternative medicine because there is no research done .I treated myself for 1.2 year with mucuna .and today i also take it about 2 times a day .Iget also lev/cab. I use 2 teaspoons of manitol . I am afraid it has influence of blood suger
There is research done but most docs won't read it.
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Gosh, people study these chemicals for years before being able to prescribe - so much to know, effect of the chemical, how long the chemical stays in the body, how eliminated, side effects, interactions, optimum amount. Far more than we here could ever know. Multi chemicals means multi potential interactions. You need a good chemist.
I've gone back over your previous posts and comments to try to get a better understanding of your situation.
Here is my summary:
- your mom is about 74 years old and has had non-tremor-dominant PD for about 11 years;
- she has been wheelchair bound for about 1 year;
- her current medications include sinemet, mirapex, amantadine, something for depression, something for thyroid;
- her current supplements include Mucuna, NAC, ALC, ALA.
Your main question seems to be whether there could be some side effect(s) of any of the supplements which could explain your mom's current state of "no energy - eyes half closed", her gain in weight, etc. The answer, of course, is "possibly", and not just in regards to the supplements in isolation, but also in combination with other supplements, and in combination with medications. The more supplements (and medications), the more possible side effects, and the more possible interactions. As Hikoi said: Multi chemicals means multi potential interactions.
But the "no energy - eyes half closed" state is not just something recent. You mentioned something very similar 8 or 9 months ago, before you started adding most of these supplements:
Back then, silvestrov suggested that mirapex might be causing the problem. A quick look at the common side effects for mirapex shows that "drowsiness" and "unusual tiredness or weakness" are included in the list.
Did the "no energy - eyes half closed" state disappear for a few months, or has it been present for the last 8 or 9 months?
You are right - its there , sometimes less and sometimes more - she is still in the hospital - found she has a touch of pneumonia - now is this walking pneumonia or aspirational not sure yet .
She was better with eyes open yday , today again exhausted and sleepy .
Could be the massive dose of antibiotics wiping her out .
When I thought I knew about everything in parkinsons - I didn't know about the connection between parkinsons and pneumonia .
She was a lil better for some time and then last month or so before the pneumonia this whole thing started- could it be the pneumonia, the anitbiotics, parkinsons or some drug- not sure . Silvestrov had suggested NAC, ALA and ALC.. and that's when we started that . We have reduced Mirapex and she is only taking it at nite - I had gone to see her and the sleep is like someone totally drugged her.
We are going to stop everything and then try to introduce one thing at a time .. I also brought 5K Lux light as I read good reports on it for daytime sleepiness .. parkinson.org/find-help/blo...
It could simply be that her sleep quality isn't good enough - it can be hard for people with Parkinson's to get enough deep sleep - and that is what restores us. Root vegetables may deepen sleep quality, nd sugar (High glycaemic index carbs) will lighten it.
The only thing I could point out is that there is no point in giving her 1/4 tsp. of mannitol--it is way too little to have any benefit. The target dose suggested by the clinic crowd folks is 2 tablespoons per day: clinicrowd.info/submit-park...
(Be patient: this clinic crowd page took about 75 seconds to load on my old Macintosh.)
"Participants in the registry after beginning to take Mannitol, reported a gradual start, beginning with 1 teaspoon for a period of 3-7 days and then increasing to 1 tablespoon for an additional week before adding yet another teaspoon/tablespoon.
Those who take 2 tablespoons report that they take one tablespoon in the morning and one in the evening OR; 2 tablespoons in the morning OR; 2 tablespoons in the evening. Some take it with coffee or tea and others with orange juice or lemonade.
Subjects are taking it in parallel to the already prescribed medication. Some reported they have reduced their Parkinson’s medications or remained on the same dose for a very long time, others stopped taking their Parkinson’s medication after consulting with their treating physician. Some have reported to their treating physician about the Mannitol, others kept this information to themselves to keep the physician objective."
My own measurements with a standard tablespoon (Tbs) showed that one level Tbs. contains 6-7 gm of mannitol. So a dally dose should not exceed 3 Tbs. or 20 gm.
dumpelkin said: "The target dose suggested by the clinic crowd folks is 2 tablespoons per day"
Hang on, be careful there!
The recommended dose is determined by the person's weight. For example, according to the table on the CliniCrowd website (normally only visible after you have registered), for a person who weighs 70kg (154 lbs) the recommended dose is 10g (0.35 oz) per day.
But I agree with your main point i.e. that a dose of 1/4 teaspoon per day will have little effect. I didn't mention this in my initial comment because I regard it as a minor issue, and 1/4 teaspoon per day is unlikely to do any harm.
I appreciate your caution. But, as they say, "nothing ventured, nothing gained." At such a low dose, one might as well skip the mannitol altogether. Even at a significant dose of 1-2 Tbs., the benefits, if any, are likely to be subtle. I have been taking the mannitol for several months now, and I could not swear on the Bible that I see any results.
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Mom is back to ER
Antidepressant
I NEED GUIDANCE
Back again with another question about spouse's DBS results
I fall more now that I had DBS surgery
