Lewy Body

Hi everyone,

I was diagnosed with atypical Parkinson's 21/2 yrs ago..since then I have changed neurologists and now I've been told I have Lewy Body with dementia. Besides all of the cognitive issues I have Parkinson's physical symptoms...( muscle stiffness, balance issues, weight gain( I crave sugar) blurred vision etc) I'm taking Sinemet 100/25 Q 3 hours. I'm coming off at the 2-21/2 hr. I'm feeling fearful that this is progressing quickly as I started 2 yrs ago with 1 Sinemet daily.

I've done some reading on Lewy Body...

Does any one have any thoughts or have Lewy Body that can help me ?

5 Replies

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  • You might wish to contact the Lewy Body Dementia Association

    (www.lbda.org) to learn more about the condition, medications, treatment options and support groups for LBD patients/caregivers.

  • If there is a good teaching hospital nearby with a 'movement' dept, get an accurate diagnosis. Then you will have to decide which philosophy to follow: to start on Sinemet right away or not. Doctors are divided on the approach but all PD drugs 'wear out' after a few years and on to more potent drugs with more side effects. We chose to delay drugs and used Zandopa successfully for several years. Finally on carbidopa/levadopa but a lot of alternative treatments along the way. If you have money, you can get hyperbaric oxygen, glutathione IV. If you have a lot of money, you can get rTMS deep brain stimulation. You can get a battery driven standing bike and use 'forced' exercise. All these help. After years of research, I am convinced that any doctor who gives drugs without first doing a Spectracell test(tells nutrients inside cells), a food sensitivity test and a stool test for bacteria and yeast is guilty of malpractice. They won't unless you are in the right place because they aren't covered by insurance. It is important to check on ALL the body systems and keep them humming. When I suspected my husbands thyroid was off and tests confirmed it, the doctor (not now) said, 'well, what did you expect...he has PD'. And then did nothing to correct it. Another..the head of the movement dept at a large hospital said 'don't ask me about supplements...I don't know anything about them and don't want to know.'

    You will need to get educated and be your own advocate. Like almost all medicine, if a treatment isn't covered by insurance, it ceases to exist in the professional mind.

    The rTMS was and is amazing. Hugely expensive but greatly helpful, more with regard to mobility than depression but still helps with normalizing attitude and thinking.

    As you can see, we have tried everything.

  • please tell me what is rTMS

  • Electromagnetic stimulation to the brain. Google it. My husband gets deep brain version.

  • Thank you Donzim for a quick response does it help to eliminate the symptoms

    how often does he do the treatment how long has he had the PD

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