Hello all!
Curious if anyone in the group has ever dealt with being resistant to LD out there? I’m curious BC I have gut issues and I think I may be resistant to l-dopa. Any feedback would be greatly appreciated. Thanks so much!
Nasal or intramuscular delivery - Cure Parkinson's
Nasal or intramuscular delivery
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MissRita
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Hi MissRita:
Do you eat much protein?
This can greatly interfere with the availability of levodopa (and this effect would make you think that you are resistant to l-dopa)...
MissRita in reply to
Honestly I don’t eat a lot of anything right now. I take Mucuna in the morning because the levodopa pills that I was given actually make my symptoms worse and I have read that in many articles and many stories about people not being able to tolerate LD. I’m going in for an endoscope and a colonoscopy next week because what’s basically happening for me is from the time I wake up till the time I go to bed any kind of twitching or tremors or anything like that are and have been related to distention, burping, gas, and bowel movements or the lack there of. I’m trying to figure out why this is happening because they’re saying that it’s not always or shouldn’t be the case with Parkinson’s because typically Parkinson’s people only have constipation but in my mind I’m thinking it has something to do with a smooth muscle and possibly the Vagus nerve. The odd part is and the doctors can’t seem to understand why this is I wake up in the morning every morning and even as I write this starving as if I had ran a mile overnight and hadn’t fed myself in days. Craziest thing I think I’ve ever dealt with in my life and cannot seem to put my mind around it or wrap my right mind.
The other part that worries me is multisystemic atrophy. When I mentioned it to my doctor they seem to think that MSA starts in the latter parts of Parkinson’s disease but I have to somewhat disagree as I had a dear friend die at 51 a couple of years ago and they told her she had 7 to 15 years left to live and she died seven months after the diagnosis.
Hence the reason why I put this post up in terms of having something done nasally or intramuscurly. Additionally, the odd part of this whole thing is all of the symptoms that I have seems like I could have diabetes type one when they take my A1 C test and other test for it it comes out completely normal. Figure that one out LOL LOL
You’re probably asking yourself how does she know this is something to do with that and how I know is when I feel a burp coming on or passing of gas or anything like that is related to the digestive system as soon as the gas or burping is released then the tremor starts and then I slowly and slightly come down to less of a tremor but I’m pretty sure this has something to do with my gastric system. I bottom line is, it’s so freaking frustrating because nothing seems to touch the tremor except for the Mucuna. Even then, it’s not long lasting and when I take it in the morning at last 4 to 6 hours and then I have to take it every 2 to 4 hours for the rest of the day.
Your symptoms do not match up with MSA, which is good:
ninds.nih.gov/Disorders/Pat...
Mucuna effectiveness for tremor is strong evidence of Parkinson's.
Your comments have prompted me to notice that bathroom duties do aggravate my tremor. I regard that as normal for Parkinson's.
FWIW, stress and anxiety aggravate both tremors and G.I. issues, so worth doing that you can to destress.
They also put me on amantadine which sort of worked in the beginning and then that just made my tremors even worse. I do know this is nervous system related but I also believe for me it’s highly gut related and that’s what’s so frustrating at this point.
in reply to
Wow, I am sorry to hear you have such a complex situation...
I asked about your protein intake, because there was a time I would blame my unexpected "off" times an my gut motility (e.g., gastroparesis, constipation, ...), but in the end it was "all" about the protein I ate. Meaning once I controlled the protein I ate, my levodopa performance became consistent/reliable...
Note I wasn't sensitive to protein in the first 5 year after diagnosis...
Anyway, good luck with your endoscopy/colonoscopy... I hope you gets some answers!
MissRita in reply to
Thanks for your support. Yes I totally agree with you that my situation is so complex. The funny thing is last night I was so hungry that I pulled out some chips and a sprite even though I’m not supposed to have either one but I figured it wasn’t a protein and I took some Mucuna and I felt better before I went to bed and of course as I woke up this morning I began to shake. I’m hoping they get some answers next week. Thanks again.
pdpatient in reply to
@levod. I have had the same experience. Even a tiny bit of protein and bam!!, everything went south. The days when I fast are the days heavenly bliss as far as Parkinson's goes.
I find intermittent fast us best.
RKM
I believe that too but I get so hungry that I’m not quite sure what I should do. The other issue is if I do fast intermittently my blood sugar goes south and I feel like I’m gonna pass out. It also makes me very emotional to not eat which is so freaking frustrating.
About 10 minutes ago I had a BM in right before I had it I started to tremor uncontrollably and then after I was finished I did not tremor as much but now I’m starving lol
@missrita, I felt the same way at first. After going one full day without any food, the hunger pangs went away. I tried easing into it slowly with diluted fruit juice at first throughout the day time fast period and that worked well also. I follow Dr Jason Fung.
RKM
in reply to pdpatient
I reckon I am now able to eat up to 5 grams of protein per dosing interval, but that doesn't buy you much... For example, a typical lunch for me is a "Mediterranean Vegetable" sandwich. 4 grams of protein total in the 2 slices of bread, 1 gram of protein in the 1 tbsp of hummus, and "no" protein in the tomatoes, cucumbers, red onion, peppers... The recipe calls for feta cheese, which I like, but can't afford it in my protein budget...
pdpatient in reply to
"Protein budget" lol 😂
The other part that worries me is multisystemic atrophy. When I mentioned it to my doctor they seem to think that MSA starts in the latter parts of Parkinson’s disease but I have to somewhat disagree as I had a dear friend die at 51 a couple of years ago and they told her she had 7 to 15 years left to live and she died seven months after the diagnosis.
They also put me on amantadine which sort of worked in the beginning and then that just made my tremors even worse. I do know this is nervous system related but I also believe for me it’s highly gut related and that’s what’s so frustrating at this point.
Your symptoms sound like they could be from too much l-dopa being converted to dopamine in the peripheral nervous system and not enough making it to the brain. This could be caused by taking mucuna without carbidopa.
How much mucuna and how much C/L do you take on a daily basis or are you taking mucuna only?
4 caps of Mucuna (650 mg at 40% of l-dopa) which is 260 mg per cap, and NO c/l. The c/l made my symptoms worse.
4 caps in the morning, and 2-4 caps every 2-4 hours after that.
Do you realize that you are taking around 1,000mg of l-dopa multiple times per day?
I'm not a doctor so please check with yours but I think the total amount of l-dopa you are taking is causing the problems and very little of it makes it to the brain where you need it.
I did let them know and I’m waiting on them to call me back. I did try C/L and it made the tremors worse, so I’m not sure if I should detox off the Mucuna and then start C/L or not. I’m calling again tomorrow. Thanks!
If mucuna works C/L will also work since the levodopa is the same chemical molecule regardless of the source.
I have read that there is no benefit to taking more than 3 instant relief C/L tablets. Using that as the upper limit, I suggest you establish your effective dose of C/L. This is the amount required to generate an "on" state with minimal side effects and untreated symptoms. Maybe start with 1 1/2 tablets and go up by a 1/2 tab if that dose fails.
Yes that makes sense. Given the fact that it’s got carbadopa in it but at least I won’t throw up. With the Mucuna I throw up a lot more than I would like to LOL
Are you taking barlowes brand? I take that too, but only one cap in the morning and one in the afternoon, I take it with 1/4 carbidopa tab. It works great. Maybe you wanna try asking your doctor for a prescription of only carbidopa. Or even before that you could maybe try 1cap of the mucuna and 1/4 cl and see what happens. If it works the you could ask for the carbidopa prescription.
Also, take the mucuna with some crackers or something like that to prevent nausea
This may not apply to you, but I had serious GI problems with Sinemet, but I was switched to Madopar, ( actually Prolopa, the Canadian version) and have no problems This me angst must be the Carbedopa
I am on a high dose, and I get no nausea, in fact no side effects at all. I get all m y advice from a Movement Disorder Clinic. Not from a website. The Clinic sees hundreds of patients a year , so they have a huge amount of experience. The vast majority of people with Parkinson’s are on Sinemet, which has well known effects and side effects. Read about it , and Madopar on Google. Yes, they both contain levodopa, plus another substance. This second substance is the difference.On this website, many seem to prefer Mucuna on the grounds that it is “natural”. I don’t buy this. Find a Movement Disorder Clinic, and a physician you can trust, then take their advice.
Where are you located? The problem is where I go now it’s not exactly a movement disorder clinic and I think I’m gonna have to go to Rochester New York because I live in Syracuse and even though the doctor that I have now is good and he supposedly does movement disorders it’s not a true clinic. I also think Mucuna is actually wearing out it’s welcome presently.
I live one hour North of Toronto. The MDC go to is at St,Michaels Hospital, There is quite a waiting list. The first visit is two hours, after that folllow ups are one hour. My last two visits were by telephone, which suited me well, as the traffic is so bad.I am a retired physician BTW. I can remember when Sinemet was first available, in the 1970s. I had one Parkinson;s patient who was so advanced he could not get out of bed. When started on Sinemet , he was able to return to work. It seemed a real miracle drug.
Do you think they would take a patient from the US?
I will find out, and get back to you.AS you know we do not pay for medical care in Canada.
Yes, they take patients from the US but need a referral from your Neurologist. It takes time, when I was referred, it was several months before I heard from them.Good Luck
St. Michael's hospital
Movement Disorder Clinic
30 Bond St,
Toronto ON M5B 1W8
Canada
Its more likely that you metabolize it quickly ask your Doctor about entapacone it will slow the break down of LD cheap and effective.
Why do you think that? There may be something interfering with the absorption I.e. gut problems like H Pylori. Or maybe you have an allergy?
Is there a reason you would rather go to another country (Canada) instead of going to Rochester? From Syracuse, it should take less than 2 hours to drive there, a lot shorter than a trip to the Toronto area, or am I missing something?
MissRita in reply to
It is shorter for sure from Cuse to ROCH but I haven’t heard that they are a motility disorder leader either. Any feedback that you know of?
in reply to MissRita
There’s a designated Center of Excellence there: parkinson.org/blog/centers-...
MissRita in reply to
Wow awesome thx!
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Why does my tremor vanish when I'm falling asleep?
