I am a 79 year old widow and have been traveling the maze of Parkinson's since 2014. It seems like as soon as I find a neurologist I like they either move or retire. I have to travel 100 miles to my movement specialist. I have become very disappointed with him in the last couple of years. I'm lucky if I see him in person once a year. I had been doing fairly well with Carbidopa/Levadopa 7 to 8 times a day. (prescription for 8 tablets 25-100)
Everything changed at Christmas when I came down with pneumonia and a urinary tract infection. The ER doctor prescribed the antibiotic Levaquin. Ten days of it almost killed me. I have struggled to try to get back to where I was. The first of February I had an appointment with my doctor. The 100 mile trip was rough on me so I took 1/2 Sinemet to help with pain. I was fully mobile before and now rely on a walker about half the time.
Rather than listening to my struggles with the illnesses, he lectured me on the use of Carbidopa/Levadopa and that it can be addictive. Then he lowered my prescription to 7 pills. He didn't want me to take any at night. My daughter in law was at the appointment and she jumped right on board with the detox program. {as did my two sons and other DIL. ) It has been horrible. I am having so much more pain. I have to "rough it" until time for the next dose. Night is the worst. I now use a walker most of the time.
I am looking for a new doctor in another city.
Has anyone else faced this problem?
Written by
tgargoyle
To view profiles and participate in discussions please or .
I'm not there yet and only take 12.5 3 to 4 times a day, generally when I'm most active through the daý 10-4. I purposefully spend time off it for many reasons one of which is reliance/addiction to it. So I tend to have 16 to 18 hours off it trying to understand/live / adapt with the worst case symptoms. But I guess this will become morè difficult to do as time marches on. Also it depends on how debilitating your symptoms are.
Do you have new symptoms since the Levaquin? From recent articles Levaquin alone can cause some problems.
I am not on CL (not diagnosed with PD) . I don't know where you live, but it would seem reasonable to try and find a different doctor. He does not sound very curious (if that makes sense).
I take 9 25/100 and 2 50/200 a day. I would find a new Neurologist right away. Your boys need to chat with me and I will it clear up. I would let them know they will be treated the way they're treating you when it comes their time. I watched it happen to family members who suffered the similar treatment from their loved ones. I would take the doseage that works for you. If you no longer need a walker you will have answered your question.
Yep I have same problem. I take 1.5 Carbidopa/Levadopa 5 times a day every 3 hours. Usually takes 30 min to an hour to kick in (Although sometimes it has no effect) & usually lasts 1.5 hours - then the horrible wearing off starts and you feel awful till the next dose kicks in. My previous Neuro told me that its an addictive drug because it makes feel high. It actually makes me feel a bit "Dull" & yes it does make you feel a bit high. You only feel good because you are mobile again. Ali I can suggest is exercise - even in those wearing off waiting for next depending on how limited your mobility is. I am prone to falling and have balance Issues - So I do chair yoga - Less chance of falling - i think the more you do exercise the better - train your muscle memory in those off periods Good luck
I fill in the gaps with mucuna pruriens, a natural source of leva-dopa which I buy OTC on amazon. With the help of mucuna, I have cut back to 2 and 1/2 sinemets (20-100) a day. MUCUNA comes in many different forms but the best I have found so far is the "extract" produced by KeterWellness. Photo included. There is no need for you to suffer the way you describe. The only side effect I've had so far from the mucuna is mild stomach upset if I take too much. And I've been taking it since 2015.
It was pure trial and error. I started taking 100mg macuna extract along with my sinemet and then bumped it up to 200mg macuna, then 300 mg macuna, then 400 mg, then 500 mg and so forth until I noticed a change and could feel the effects. If you take enough macuna you WILL feel it (feels very similar to sinemet). At this point, if you want to continue raising the macuna, you need to start cutting back on the sinemet, especially if you begin to feel side effects like mild nausea and/or mild headache. It took me a couple of months to find a level that was right for me. Right now, I am taking 700mg of Keter Wellness macuna extract five or six times a day [along with 2 1/2 sinemet tabs (25/100)]and feel great. Here is a book written by an M.D. which was an enormous help to me: mucunaparkinson.com/
I have virtual appointments with the movement disorder doctors and support staff. They work closely with my primary care and I also have a local neurologist they can contact. Their services are unique, and I I highly recommend contacting them to see if this is a good fit for you and your husband.
Thank you! No primary doctor other than VA. We fired our civilian primary care and stayed with VA doctor. No local neurologist either, we drive to Vanderbilt to see hubby's MDS.
the doctor does not require a local neurologist. I happen to have one who is more than happy to work with her, but I don’t expect that will be necessary. Also, my primary doctor is very impressed with Dr Ferluga and said he will work closely with her with any information she may need from him
So sorry to hear about your situation! I have zero faith in neurologists or movement disorder specialists. They are guessing and not very well. Even worse, they don’t seem to stay up to date on any kind of new developments and are very dismissive of anything they’re not familiar with.
I’ve been able to see a movement disorder specialist virtually for the last few years. it’s legal in many places although they like to see you in person but if that isn’t convenient for you that’s not your problem. You are the boss. If you need different dosages, they need to listen to you.
My Neur0/MDS is not a fan of sinemet due to the sharp up and down curve it creates in the brain..the higher the dosage the steeper those ups and downs. I was taking 1100 mg a day of Sinemet and each off episode was horrific. So much pain, leading me to think it was PD progression and I needed more and was preparing for DBS. However, my Neuro said, we need to taper you off sinemet and try Rytary to even out that curve so that you are not experiencing such highs and lows. Long story short, I now take only 3 pills a day, Rytary 145 mg. I might take 25 or 50 mg of sinemet if I need on a heavy exercise day but that's all. He later told me, if neuro's could only prescribe Rytary they would get rid of sinement..the highs and lows it creates are too extreme for the brain to tolerate. If you can't afford Rytary ask your Neuro the generic version of extended release c/l. I do think there is one. I believe it will help you quite a lot. I'm so sorry you are having to go through such horrific pain. A good Neuro would not reduce your Levodopa without having a backup plan such as adding Rasagiline or extended c/l.
Hello BeedieBird. Thank you for sharing your thoughts and experiences. Wondering about how you were able to taper off the Sinemet.
I’m asking here on behalf of my husband who has PD (Age 71 - Diagnosed 65). We are coming round to the same conclusion as your Neuro re the trouble with Sinemet. My HWP unfortunately ended up taking too much L-Dopa. We started with a reasonable dose of c/l (Levocarb in Canada - similar to Sinemet) but after a few years, we ended up increasing the dose by adding Mucuna to try and control symptoms, the worst being mainly tremors. It worked well but in a short time the strange dyskinetic movements crept into the scenario, and increased as we increased the L-Dopa dose to try and give full relief of my HWP’s symptoms.
As of a year ago or so, he ended up on 1,270mg of L-Dopa total and of course is dealing with a lot of dyskinesia now. As well he definitely has the bad Off’s where his mood crashes and he develops strong dyskinesia well before the next dose is due... (End-dose dyskinesia)
Over the last several months, we’ve been slowly working to decrease his overall dose but it is painful and slow. He is down to 1,170mg – we’ve been decreasing by 25 mg at a time and holding for several weeks at a time. Any faster and his mood crashes badly. ☹
Just wondering how you did the tapering of the Sinemet?
I only started to taper off with the help of my neurologist. Trying to do it by myself was just too painful and I felt my body was crashing way too hard from the elevated swings of the immediate release of sinemet. My neuro put me on 145 mg of Rytary 3 times a day and he said to keep the sinemet and taper off the immediate release as I felt comfortable with. My body was unable to tolerate much of a reduction but I combined immediately but I started a month after the Rytary to reduce Sinemet. I took 1/2 of a 100mg tablet (50mg) alongside a Rytary 145 mg. 3 times a day but also still needed 2 more doses of Sinemet to complete my day and often woke up needing another 1/2 of sinemet to get back to sleep. So the Rytary was not the complete answer, but it was part of it.
I added 2 supplements in March. After 2 weeks, I drastically began reducing my Levodopa Sinemet much to my surprise. Can't tell which one had the most impact since I started them at the same time, but one or both contributed finally to my body going 4-5 hours without me noticing I had missed a dose. I then realized, oh, I no longer need that the high dose I was taking and began tapering off based on 'how I felt' and not what someone else felt I should be taking. I am not on Rytary 145 mg 3 times a day and only had an extra 50mg or maybe 25mg of Sinemet if I feel I need it due to a stressful day or lack of sleep the night before - both of which cause my body to need more dopamine.
The 2 supplements I began taking mid-March are below. I did a lot of research prior to taking them. The first one PectaSol (blocks Galectin-3) is modified Citrus Pectin and the DR. that developed it I heard in an interview by Dr. Terry Whals who I follow and believe in wholeheartedly. If she recommends it and uses it, I'll try it! The other supplement, Glutaryl+ is glutathione delivered thru the skin to maintain it's integrity. Glutathione has been shown to be very helpful with PD but orally and IV (which is very expensive) it is not as stable. I believe both of these have been huge in helping me to reduce Levodopa.
Thank you so much BeedieBird for your detailed explanation of how you did the taper and switch. I will read it more carefully a little later as I'm in the midst of something now. I'll definitely come back to this and respond better.
So you are not even taking Rytary now? I tried the only supplement route with HWP and it was a disaster.
Interesting the glutathione is a transdermal spray. It looks like this is more for beauty and wellness. Aurora makes a liposomal version of glutathione. My HWP did the glutathione push (IV) $$$ could not see much of a benefit. We are also trying to reduce some of his PD meds, he has too much daytime sleepiness. His movement specialist gave him samples of Inbrija to test if it reduced his symptoms when he had a what I call a PD flare. It does help but very $$. I think he is overmedicated too. He can not take his Ryarty with any food, for him it interferes with absorption. He takes digestive enzymes with meals that does help.
I will look into the citrus pectin it can interfere with absorption of beta-carotene.
I do take Rotary. 145mg 3 times a day. The glutathione spray is building up glutathione levels in the body. The transdermal doesn't break down as the IV will. Hime also develops another type of spray for skin and beauty but that is separate. Good luck !
My MDS switched me to Rytary when my old neurologist had me on Entacapone, which made me feel awful and I was at my wits end when he went out of town after prescribing a new medication. Surprising to me, she has me take 2 50/200 CR Sinemet at 10pm to get me through the night until my first Rytary tablets at 5am.
From watching some videos, it seems that destroying the microbiome by antibiotic intake can really be bad for someone with PD.
I think you should try to restore your microbiome by adding fiber and suppressing sugar.
My friend has had a worsening of his symptoms specially at night which led to an apomorphine pump. It would help you a lot to be more stable throughout the day.
When you feel better, try to start exercising…
Then look into red light therapy and others…
Basically, these people around you are not in your shoes and they have no idea what you are going through. Find what’s best for yourself !
Try to listen to « No silver bullet » channel on YouTube. You will get an update on many therapy leads…
A solution is buy Mucuna Pruriens on line, and have it when you crave of Sinemet. It is natural Levodopa. You should by the one indicated the % of L-Dopa it has. Usually is 15% or 40%. I have bought three different brand of Mucuna Pruriens is Nutricost brand, which is 40% L-Dopa.
The fluoroquinolone antibiotics which include levofloxacin (Levaquin), ciprofloxacin (Cipro), gemifloxacin (Factive), moxifloxacin (Avelox), and ofloxacin (Floxin) are often prescribed for UTI. They have serious black box warnings and if you search youtube for "Antibiotics with the WORST Side Effects (Dangerous Antibiotics) Fluoroquinolones" by KenDBerryMD you may find explanation for your new health problems. You can also find some videos of patients who have been "floxed" by fluoroquinolones. Wishing you speedy and complete recovery.
Hubby's worst nightmare--ANTIBIOTICS! He is allergic to most of them and the "brilliant" doctors almost killed him administering them often times without a good reason. It's a long story. . .
Sorry to hear about your hubby's ordeal and doctors giving out antibiotics like candy. Years ago I was required to take antibiotics before every dental procedure including teeth cleaning due to mitral valve prolapse and was relieved when finally some studies shown that it was not necessary. So, for years I was taking all those antibiotics for nothing...
I hear you. . . I have talked to his dentist that no antibiotics or X-rays for anything. He's got all his teeth, takes care of them and has regular cleanings.
First let me say that I am taking close to 12 tabs od C/L per day. I am scheduled for DBS in May. There is no cure for Parkinson's. They can only hope to improve your QOL until you pass. Agreed? SO the goal is QUALITY OF LIFE AND NORMALITY. Agreed.?
On the other side of this, your family as misguided and ignorant as they may be, are trying to protect you. They probably have no clue as to what you are facing.
Tell them to read this. Please.
"You cannot cure your mom. You can only improve her QOL. And you are failing miserably. YOU WILL REGRET THIS LATER. I understand you love her. But you are missing the mark. She is suffering and her only hope of normality is currently the med C/L. That unfortunately is not permanent.
Spend the years you have left with her - wisely . I don't know if C/L is addictive and neither do you. FIND ANOTHER NEUROLOGIST / MOVEMENT DISORDER SPECIALIST. This guy sounds wak! I know the longer you take C/L , the less effective it is. But that is true of ANYTHING. In the meantime the disease is progressing! So that means she will inevitably need a higher dose. So that is to be taken into account as well. For example, I know that if I am taken off C/L it will end in a bed ridden / wheel chair existence for me. 2 weeks ago they had to take me off of the C/L to observe my "off state" to qualify my DBS. It took me a week to get over that. It was a bad time for me. This stuff is brutal! Currently I work to support a family with no hope of retirement at 68 yoa.
So choose wisely. The years you have left, please don't spend them like this. This is torturous for her. If you want to help her study this disease.
First let me say that I am taking close to 12 tabs od C/L per day. (100/25)I am scheduled for DBS in May. Sadly there is no cure for Parkinson's. They can only hope to improve your QOL until you pass. Agreed? SO the goal is QUALITY OF LIFE AND NORMALITY.
On the other side of this, your family as misguided and ignorant as they may be, are trying to protect you. They probably have no idea as to what you are facing on a daily basis.
Tell them to read this. Please.
"You cannot cure your mom. You can only improve her QOL. And you are failing miserably. YOU WILL REGRET THIS LATER. I understand you love her. But you are missing the mark. She is suffering and her only hope of normality is currently the med C/L. That unfortunately is not permanent.
Spend the years you have left with her - wisely . I don't know if C/L is addictive and neither do you. FIND ANOTHER NEUROLOGIST / MOVEMENT DISORDER SPECIALIST. This guy sounds wak! I know the longer you take C/L , the less effective it is. But that is true of ANYTHING. In the meantime the disease is progressing! So that means she will inevitably need a higher dose. So that is to be taken into account as well.
For example, I know that if I am taken off C/L it will end in a bed ridden / wheel chair existence for me. 2 weeks ago they had to take me off of the C/L to observe my "off state" to qualify my DBS surgery. It took me a week to get over that. It was a tough time for me. This stuff is brutal! Currently I work to support a family with no hope of retirement at 68 yoa.
So choose wisely. The years you have left, please don't spend them like this. This is torturous for her. If you want to help her study this disease. I am praying for you and your family.
My sister hid my mothers pain killers because she was afraid that she would become addicted. I found some more and Mom died peacefully 4 weeks later from inoperable cancer .
Sometimes people dont think.
oh and get yourself another Nuroligist one that is old enough to have had a few PD patients who were playing the end game. Be calm but dont take any crap just explain to you daughter why it does not matter if you are addicted.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Change in meds
Carbidopa-levodopa (sinemet) and Azilect side effects.
Do anybody know if Zandopa would work without taking Sinemet? I've had PD for almost 15 years and have been on Mirapex and
Update on Sinemet Nausea and Fatigue
Leg Cramps when taking Sinemet
