Hi everyone, this is my first post - thanks for sharing all the information on here, it's so helpful!
My Mum was diagnosed with Lewy Body Dementia following a DAT Scan in May and suffers badly from delusions, hallucinations and Capgras syndrome - involving my Dad. These are having an enormous impact on their lives and none of the consultants my Mum has seen have come up with any medications to tackle these. Currently she is on Rivastigmine patches 4.6mg which is the maximum she can tolerate and I have started her slowly on a Thiamine protocol after seeing details on here from Mr Costantini, although he hasn't tried it with LBD it is worth a shot! If anyone has any recommendations for meds or supplements to try I would be very grateful.
Thanks
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Alex2004
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Many thanks for your advice. I'm really pleased this halted your husband's symptoms, they are so hard to deal with. I will ask the consultant about Seraquel.
hello alex also my mom has dementia from lewy bodies. for now, he has no more hallucinations, since when we began to treat her with cbd oil at 10% 40 mg in the morning and 40 mg in the evening, coconut oil 40 g at three different times of the day (I advise you to read about it of Dr. Mary Newport what she did with her husband who had Alzheimer's and dementia from lewy bodies).
to tell the truth we are also giving him half a tablet of levadopa in the morning and 2 tablets of seroquel in the evening, but what appears to have changed the course of things was coconut oil and cbd oil. I have also written to Dr. Costantini to start treatment with vitamin B1 and we are waiting for our doctor to give us the opportunity to start treatment. A greeting.
keep in touch, my name is daniele gilioli if he has facebook (in the profile picture I have my feet facing the sky
Thanks so much! I will check out your recommendations. I haven't heard of the use of cbd oil and coconut oil in Lewy Bodies so I will explore this further and look at Dr Mary Newport's work. I have started my Mum on a low dose of Thiamine and am building up to Dr Costantini's dose as she is nervous about trying things and is very slight! Also, she has never been able to take large tablets so we have to crush them and the taste is so bitter - even with honey! I probably need to investigate if we can buy it in liquid form or if the doctor could give injections. Good luck with the B1 and keep in touch.
I did contact Dr Costantini, he recommended trying 2 x 500mg Thiamine tablets in the morning and 2 x 500mg at lunchtime, my Mum is a little underweight so this was taken into account. He said he hasn't treated patients with LBD yet but it is worth trying. My Mum will be up to this full dose by this week so I will assess if there are any results and let Dr Costantini know. I am hoping that it is slowing the progress of the illness so maybe there won't be any signs for a long time... only that she hopefully stays the same. The hallucinations are the biggest immediate problem and these have not been helped by the Rivastigmine.
I'm very interested in knowing how it goes with Dr. Costantini's therapy. for hallucinations if the thiamin does not help test with this youtube.com/watch?v=sb6g5-A... (Cbd oil)
I recommend easy swallow capsules from vitacost.com.
regarding Mary Newport and CO. I did use CO and was in touch with her. I think the final story/report about her husband was not good. In my case the oil did little.
I hope Seraquel helps you. My husband was so psychotic he fell on a chair he had overturned and got a huge wound in his leg, "fighting off intruders",that took over 6 months to heal. He had to wear a diaper.(no longer now) We went on a camping trip where he woke up running out of his tent in the middle of the night thinking the North Koreans were bombing us.
He was running around the house for 24 hours, unable to quiet down. The hallucinations started when he was taking too much dopamine. We had no luck with coconut oil, CBD or smoking marijuana before starting the Seraquel.
He hasn't had any psychotic episodes since taking one Seraquel in the morning and one at night, a total of 50 mg. He still has panic attacks but now that is being dealt with lorazepam. His motion specialist approves of all these medications, including Rytary.He drives and is as normal as a person with Parkinson's can be. He is 79.
. Our original neurologist, a hateful man said he had dementia, perhaps Lewy Body, but he doesn't. He doesn't have Parkinson's dementia either. His psychosis was causing him to be so irrational.
Thanks for taking the time to explain what worked and what didn't with your husband. I am sorry for what you have both been through, it sounds very traumatic and upsetting. I am learning this process will only progress through trial and error as everyone's experiences of various medications and supplements seem so different. It's very frustrating to not get more support from our consultants, I feel they are largely shrugging their shoulders!
Part of the problem is that even the specialists don't know everything. The first neurologist said we were weirdo's because he had never had a patient with a "wearing off" problem before. The new one seemed shocked when i told him that, it is such a typical problem. I think we learn more through fellow patients. Now when something goes well, it is so exciting, we kind of forget about the past bad stuff. Hang in there!! I'm a former RN, so looking for solutions is actually kind of fun, as though I was on the television station "Investigation Discovery, "looking for clues! Ask me anything you like, if I've found a way to ask for help, (like i scored the lorazapam for him that the first neurologist made such a fuss over giving to him, as though he was an addict. )The new one said, "fine." I'll tell you what works if something does. If you can find a motion specialist instead of a general neurologist, that is your best bet.
Thank you! That's reassuring. I'm sure I will be back in touch after the next consultant meeting. We live in England and are deciding whether it is best to see a private consultant, I am not sure how different it will be to seeing one on the NHS. My Mum doesn't have any movement problems yet, there are cognitive issues but the hallucinations and Capgras Syndrome are the really big problems for both my parents.
I looked up Capgras Syndrome. Wow, you have a really difficult situation, your Mom believing others are imposters. I would be banging my head against the wall when she operates from a place that she doesn't believe that you are you. I can't tell you how much I feel for you.
Just came across your post. My husband who has had PD for 5 years now is experiencing hallucinations. They’re horrible. When we asked our Doctor for assistance his suggestion was to reduce his dopamine intake. As we did that he too developCapgras Syndrome. As it happened, I do lots of reading on PD and I realized what had happened to him. The reduction in Sinemet was to fast. He went back on his regular dosage of 2 pills 3 times a day. He leveled out but the hallucinations are still here and worse. I asked our neurologist about the different anti-psychotic drugs and he refuses to prescribe them as he feels we will be opening a new can of worms so to speak. So the neurologist is now wanting us to reduce meds half a pill at a time for rwo weeks and see if any changes happen. Right now it’s only been a week and nothing yet. By late afternoon he doesn’t know who I am. So frustrating.
Hi there. So sorry to hear you are both going through the Capgras Syndrome too. It has been a nightmare for my Dad and we are still learning the best way to deal with it.
My Mum is on the full dose of Thiamine now - suggested by Dr Costantini and he agreed Niacin was ok to try so she is having 500mg a day too. The Niacin was recommended to me on here (thanks), see posts above. I think the hallucinations and Capgras have reduced a little and she is learning to manage it better. The best way of "clicking her back" to thinking my Dad (John) is the right John rather than the imposter / other John is for her to see him with me, sometimes even hearing me have a phone conversation with him works as a reset. It is like seeing our relationship corrects my Mum's facial recognition pathway back to the right route. Also my Dad sometimes goes out of the house for a short period and then comes in an reintroduces himself in a loud voice - hoping he will be the right John again! Apparently auditory recognition before facial recognition is sometimes more successful. The Capgras is often more prevalent in times of stress or if my Dad disagrees with something my Mum says and is definitely more apparent in the early evening.
If things continually to slowly improve I will keep things the same but am considering the CBD oil and coconut oil next.
Our consultant is reluctant to try Seroquel or other antipsychotics but they have been useful to some people on here who have helpfully shared their experiences. My research also found Mirtazipine - an antidepressant had been successful in reducing hallucinations and our consultant has said we can try this which my Dad is considering.
My Mum isn't taking any other medication apart from Rivastigmine so sorry I can't offer advice on Sinemet. I would love to know how these illnesses are actually physically causing the Capgras syndrome, the professionals don't seem to know.
I really hope things improve for you and your husband soon.
So this is our 4th week of reducing the Sinemet from 6 pills down to 5. He told us we had to reduce them slowly 1/2 pill at a time. Not much has changed. He still has me coming and going as in Capgras Syndrome and I’m finding it seems to happen later in the day.
He also now thinks we have two homes and often wants to go back to the other house! We see the neurologist on Friday and I am going to be asking him about the B1 supplement and CBC oil. I feel like I know what the answer is going to be. He has also said before he doesn’t want to give him any form of anti-psychotic drugs.
So difficult to keep explaining and re-assuring my husband on a daily basis that he is home and everything is ok. Seeing kids or the odd person I can handle it’s the Capgras that is tough to deal with. I used to get out to go shopping and now he wants to come with me cause he doesn’t want to be alone in case the “other” one shows up.
Hard to go into the neurologist and explain all the problems and have them guess at another thing to try and I have to live it along with my husband until the next appt which are usually a month apart! Sorry for venting!
Capgras syndrome is so hard to deal with; it's exhausting for both people. Is the imposter present when other people are with you both, in particular close family?
My parents changed their afternoon / evening / dinner routine and this helped to stop my Dad changing into the other one so often. I'm not sure if the stress of making the supper made the Capgras come on but the change in routine helped... my Dad was dreading the evenings before!
I have seen a general change in the last month, whether this is due to the Niacin and Thiamine I can't say, but rather than prolonged episodes of Capgras my Dad seems to flip between the two Johns throughout the day, sometime changing back and forth within a few minutes. Although this actually sounds worse it's been so much better and easier for them both to manage as it's not so alarming and I think the two blend a bit more. My Dad has been trying to be very agreeable with everything as a dispute over something small can often bring back the other John and then he is seen as the 'bad one'. With everything harmonious the awareness of two Johns doesn't seem to trouble my Mum so much.
I am tempted to increase the Niacin and also try different types. We are using the no flush type and maybe the other is more effective, I will ask Dr Costantini for his thoughts on this.
When my Mum first had the Capgras there was also house duplication and hospital duplication and the feeling of wanting to go home but there hasn't been any of this for a long time now and she is very well orientated.
I'm really hoping some of my Mum's improvements are due to the vitamin B regime but Lewy Body dementia symptoms are so changeable it's impossible to be sure. I do know that my Dad has been a lot less stressed for the last month.
I hope your neurologist has some answers. Keep in touch!
Well saw the neurologist and explained how the hallucinations have not changed with the reduction of Sinemet from 6 pills a day to 5. Again his suggestion is to keep going down a half pill at a time. He is still reluctant to administer any anti-psychotic drug. I asked about B1 supplements and he basically stated we could try that if we wished. He has no documentation on that and therefore doesn’t wish to comment! We’re basically doing this alone and based on what I read on this site!
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Lewy body disease
Cardiac arrest recovery / PD & Lewy body patient / Keeping calm 
Delusions
Hallucinations 
Hallucinations 
