Sinimet always help everyone?

[Sandmanliz]

Pretty sure I have Parkinson’s but was masked with having essential tremor my whole life. Then I had lymes I was in bed for about a year till I finally found Some solutions for that. Now I have all the very classic symptoms of Parkinson’s and keep getting worse. I tried sinemet but not much change with my Tremor Had significant nausea. Going back to the neurologist but no one seems to understand triad I have . Have any of you had sinemet not work and if so what did? I tremors ridiculously bad like a cartoon . Also a nurse so I know enough to be dangerous

[laglag]

Do you have a lot of anxiety? One of the symptoms of Parkinson's is anxiety. Ask your neurologist about it.

[Sandmanliz in reply to laglag]

no, just sad over loss of function. Was a big skier, hiker, hockey mom, anesthetist with own company and always laughing. being sick is very lonely. thank god for awesome husband and dog.

[Stardezine in reply to Sandmanliz]

You sound just like my husband and I only husband has Parkinson’s the Dat test confirmed but they really don’t know? Rytary is amazing he doesn’t shuffle near as bad couldn’t go out much because confused. Now he acts fine!!! Talks well join in conversations

[ElliotGreen]

It's complicated, isn't it?

ncbi.nlm.nih.gov/pubmed/274...

[johntPM in reply to ElliotGreen]

Looks like an interesting paper, giving details of why levodopa might stop working. But pity it's behind a pay-wall.

[Farooqji in reply to johntPM]

Here is the full article

filebin.net/5k0l409l1cy796c...

[johntPM in reply to Farooqji]

iqbaliqbal, thank you for pointing me at this paper. It is full of statements like: "tremor requires higher dosages of levodopa than what is needed for suppression of bradykinesia and rigidity. If the medication is not dosed

adequately, tremor might therefore appear to be resistant to levodopa". So, we should not ask whether a particular dose works for me, but whether the dose works for my stiffness and whether it works for my tremor, etc..

[badgerABC]

Have been using mucuna L-dopa for awhile and it works pretty well for me, but my tremors are not very bad.

[bepo in reply to badgerABC]

Start B1 to stop further progression.

[johntPM]

As I see it, there are three types of PwP: those with little or no tremor; those for whom levodopa has little or no effect; those for whom levodopa has a substantial benefit. So, no response to tremor from levodopa doesn't tell you much. (Levodopa has a more reliable effect on stiffness.)

A feature of levodopa in PD is that there seems to be a threshold below which it appears to have little or no effect, but once you cross the threshold there is an almost instant improvement of symptoms.

Did you ever titrate up to a therapeutic dose of 100 mg three times per day? Did you take something like domperidone to relieve the nausea?

[camper1]

Not sure about the sinemet not working well for you but maybe the neurologist would order a dat scan to help figure things out. Good luck.

[Batmanbrian]

I get horrible nausea if I don't eat something before I take my Sinimet.

[WinnieThePoo]

Parkinsons Disease is not always easy to diagnose with certainty, and if you also have Lymes disease and essential tremor that certainly muddies the waters. As camper1 mentioned a DAT scan may help to confirm a PD diagnosis, and a neurologist here in France would use one to confirm a doubtful diagnosis

Response to Levadopa is a strong indicator of PD and hence used as a diagnostic tool - but it is far from conclusive, and PD tremor may not respond. Levadopa is not going to help a tremor which is essential tremor - and you state that you had essential tremor.

It may help other PD symptoms if you have them

[Jandeb]

Lyme's itself can cause neuroinflammation which can affect a variety of brain functions including PD. Often it is accompanied by other pathogens and in total they are difficult to get rid of. I see a doc, Dr. K. Gedroic, who has had success in treating chemical, heavy metal and pathogen based illness in novel and effective ways. She is in Morristown NJ. Good luck!

[Sandmanliz in reply to Jandeb]

thank you, in colorado but will look into it. I have 7 of the coinfections. Have gotten better with some herbal protocols.

[Sandmanliz]

thank you for feedback. I have good insurance but DAT scan 4k still. Tremor worse but also just can't move well. shuffling. Cant even wash my hair. Does anyone else have weakness? I know Lymes can do that too. My friends son was on full ride lacrosse scholarship and was so weak he couldn't even brush his teeth. A couple of weeks ago I felt better and could jump up out of a chair and go to the gym. But tremor stays......

[bepo in reply to Sandmanliz]

Lyme can be reversed with oxygen treatments called ozone. Lyme is the great imitator.

[Jandeb]

Her treatments include a series of non antibiotic iv's as well as oral supplements/herbs. She is an MD from Harvard and recently wrote a book you may want to look at. She may know a colleague in Colorado.

[Sandmanliz]

sounds great! was thinking about IV but gets pricey. Not being able to work is taking me out.

[laglag in reply to Sandmanliz]

Have you thought about applying for social security disability ?

[Sandmanliz in reply to laglag]

no but will learn about it! didn't know as have never needed before

[Sandmanliz in reply to laglag]

Do you know much about it? Talk to a big law firm who does this only. Contingency based, 25% of backpay or six grand max. If you’ve done this what were your rates ? I think I have a good case

[laglag in reply to Sandmanliz]

I didn't go to a lawyer, but I had a social worker give me some suggestions on filling out the forms. You can go to the Social Security website and pull up the forms & instructions. It's pretty overwhelming at first, but just take your time and you can complete them without hiring an expensive lawyer.

o You need to be off work at least 6 months.

o Have someone help you complete the form, preferbly on-line.

o Have your doctor write a letter stating you're disabled & not able for vocational rehabilitation.

o When you complete the wordage, think of your worst day instead of your best. Some of the people that approve the paperwork don't know all the symptoms of PD. Put a line in there stating Parkinson's is a progressive disease that has no cure.

I was able to get disability first time through & saved the money it would take to hire a lawyer, but it be took some blood, sweat & tears to get it done. Your at a good age to get it approved also, close to retirement age but not far enough away to make it worth it.

[Sandmanliz in reply to laglag]

Thank you, I’m going to do it. It’s hard to go from being so successful to this. I’ll figure it out though!

[FergusonJR in reply to Sandmanliz]

My job had disability insurance and they provide me an advocate person to go to bat for me with social security. That way I don’t have to pay a lawyer a bunch of my benefit money!

[S70AWD]

Sinimet, or carbidopa/ levodopa also makes me sick and does nothing for tremors. I am seeking a new neurologist/MDS who will accept that it does not work for me.

[badgerABC in reply to S70AWD]

Have you tried mucuna prurians L-dopa. It works pretty well for me - better than Sinimet.

[S70AWD in reply to badgerABC]

What is it, and where do you buy it? Is it one of those things where you have to measure and convert grams, etc? Is it expensive?

[badgerABC in reply to S70AWD]

Lots of PD patients take mucuna. You can get it from various purveyors. CHK Nutrition is often recommended, but it is very expensive for 40% L-dopa. I get my 40% mucuna from Barlowe's Herbal Elixirs. It's much less expensive and available in bulk powder or in capsules. He sells White Mucuna with a dextrin carrier, or Brown Mucuna with a ground mucuna bean carrier. The white is a little more expensive than the brown. Only problem with the brown is if you are taking it as a powder in water or apple sauce, it does not taste very good.

[Sandmanliz in reply to badgerABC]

Thank you so much. How long till you see a response

[badgerABC in reply to Sandmanliz]

It's fairly quickly, but you have to figure out how much you need to be taking. My symptoms have not progressed too far. I started out taking three 650mg capsules three times a day. Since the bulk powder is quite a bit cheaper, now I am taking three grams, three times a day. I use the white.

[bepo in reply to S70AWD]

Good luck! Most MD's only know pharma medicine. I had one tell me he knew of nothing besides drugs that worked as a natural blood thinner. (I wanted to say to him, "If you don't know about it, it doesn't exist.")

[Stardezine]

New drug Rytary omg my husband acts and looks almost back to when he didn’t have Parkinson’s.. ask your Drs a life saver! Been on two months not sure how long it last? Best of luck

[Sandmanliz in reply to Stardezine]

Thank you, you are awesome

[Jughead]

Can do

[Movingnow]

Have you tried the thiamine B1 HCL? with the c/l? this helps with stopping the tremor for a lot of Parknson's people. You can find the information on this site and how to use it.