JUST BEGINNING RYTARY

WAS DIAGNOSED 15 YEARS AGO (64yo female) AND ACTUALLY GOT BETTER OVER THE YEARS AND WAS TAKING ONLY 2- 100/25 SINEMET A DAY SOMETIMES ONLY ONE. WE DETERMINED THAT I HAD LYME INDUCED PARRKINSONISM AND THAT THE NEURO LYME BUGS WERE BLOCKING MY DOPAMINE UPTAKE AS THIS NEURO HAD NEVER SEEN ANYONE IMPROVE FROM PD. EVEN AS LATE AS DEC 14TH WHEN HE SAW ME LAST STILL HELD THAT OPINION. HE IS MY LYME NUERO

I AM BEING TREATED FOR LYME AGAIN AS IT IS BACK. I HAVE BEEN TAKING BICILLIN- LA FOR 12 WEEKS. AS FOR MY PD IT HAS CHANGED FROM BARELY BEING THERE TO SO BAD THAT I AM UNABLE TO LEAVE THE HOUSE, CANT DRIVE, SOMETIMES CAN BARELY DRESS MYSELF. I EXPERIENCE MORE OFF TIME THAN ON TIME WHICH I NEVER EVEN HAD OFF TIME BEFORE, THE MUSCLE PAIN IS UNBEARABLE DURING OFF TIME WHICH YESTERDAY THE LONGEST OF SEVERAL BEGAN AT 3PM AND LASTED UNTIL 10PM. I CAN PROBABLY GET ADJUSTED TO DOWN TIME BUT THE PAIN IS MORE THAN ANYONE SHOULD HAVE TO ENDURE. I USE HEATING PAD, TENS MACHINE, I DO YOGA AND I AM NOW USING A STATIONARY BIKE.

I HAE ADDED A NEW NEURO TO THE MIX AS THE OTHER NEURO SPECILAIZES IN LYME. I WENT TO THE NEW NEURO SPECIALIZING IN PD AND SHE HAS STARTED ME ON RYTARY WHICH IN THE FOUR HOUR PERIOD I TAKE IT GIVES ME 30 MIN ON TIME. IS THIS NORMAL OR SHOULD IT WORK BETTER. I AM SLOWLY BUILDING UP THE AMOUNTS UNTIL I REACH 2- 23.75/95MG FOUR TIMES A DAY WITH 2 SINENET CR AT BEDTIME.

iT'S HARD TO BELIEVE I WAS AT DISNEY WORLD FOR A WEEK WITH MY KIDS AND GRANDKIDS IN MID DECEMBER AND NOW I AM A SHELL OF MYSELF. IT HAS HAPPENED SO FAST. CAN ANYONE GIVE ME THEIR OPINION ABOUT RYTARY AND POSSIBLY THE LYME COMPONENT. I AM JUST DEVASTATED THAT I FEEL APART SO FAST. I FELT IT WOULD HAPPEN MUCH LATER IN LIFE BECAUSE I HAD BEEN SO STABLE FOR SO LONG. ANY ADVICE APPRECIATED.

6 Replies

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  • Hi

    That sounds terrible. I dont know anything about Lyme disease but read there is alot of controversy around it when it reappears. Fybromialgia is mentioned. I wonder if you are experiencing lyme smptoms rather than pd symptoms

    en.m.wikipedia.org/wiki/Chr...

    I have never heard of pd progressing as you describe. It does not have a phase of rapid decline like that. Have you had a Dat scan? I would be wanting to cofirm your pd diagnosis, all you have described so far does not fit with classic PD.

  • Thank you for your responses.. I am a strong believer that it is the lyme that is causing the rapid change in the pd. I always know when my lyme is acting up. I have a left eye droup (palsy) and night sweats. I had signs the lyme was coming back about 6 months ago. I am being treated with IM BiCILLIN-LA once a week for the lyme. Unfortunately I had to wait several months to get the drug as it was NA in the US or CANADA. I have now had 12 weeks of injections. I usually have to take the med for several years to really kick back the Lyme. This is the only drug that goes intracellularly to bust the cysts which are almost impossible to reach. When the cells burst they give off neurotoxins which I believe has worsened the pd. The md I am seeing now specifically for pd says there has been no evidence linking the 2 BUT my lyme doc who also is a neurologist feels that when the lyme is back it is the cause for blocking the dopamine. Question re: the dat scan -- yes I did have slower dopamine uptake than normal ---- so I do have at the least parkinsonism due to the lyme or just plain ole pd with the Lyme.

    again thank you all for your responses. I amd going to try them. The pd doc has me starting out with 3 of the rytary to see how that works. I am praying it is the Lyme and that I can knock that back so the pd is not so bad. Best wishes to all!

  • Hope you get some relief soon. Certainly looks like Lyme is playing havoc with any treatment you are having.

    There are lots of different types of scans. I havent heard about the scan showing slower uptake. My understanding is that Dat scans only show whether you have decreased dopamine neurons in the brain, usually just one side is decreased.

    Have you put Lyme into the search on the forum. There are a few posts about Lyme.

    Good luck.

  • I do not have Lyme disease but am finishing up on a documentary which has a Lyme disease/Parkinson's disease section. In my research I discovered several natural therapeutic options for killing Borrelia burgdorferi including, Samento, Banderol and Allicin.

    Samento: newswithviews.com/Howenstin...

    Samento & Banderol: lyme-disease-research-datab...

    Allicin: allicincare.com/documents/l...

    I hope this helps.

    Rich

    PS. Here is a supplement which may help increase your energy levels.

    Glycophospholipid Formulation with NADH and CoQ10 Significantly Reduces Intractable Fatigue in Western Blot-Positive ‘Chronic Lyme Disease’ Patients: Preliminary Report

    researchgate.net/publicatio...

  • I tried Rytary for just a few days and found it so unpredictable that I stopped it. Your experience sounds like mine.

  • Did you have a round of doxycycline? Contact stony brook university on long island.

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