LBD

[EEMaui]

My wife was recently diagnosed with Lewy Body dementia and This site was recommended to me by a friend. Looking forward to seeing posts on this dreadful disease and sharing my wife’s progress as well

[chartist]

EEMaui,

Welcome to the forum!

I think you may find a significant amount of useful information here as well as many people who have a lot of practical experience when it comes to PD!

If you are already familiar Dr. Costantini's HDT/B-1 protocol for PD and other neurodegenerative disorders he mentioned that it may be helpful for PD dementia on the HDT FAQ page. Here is a link and look at question and answer # 44.

healthunlocked.com/parkinso...

For more information on his HDT/B-1 protocol, here is another link that should answer most questions you may have :

healthunlocked.com/parkinso...

Art

[Hidden in reply to chartist]

Lewy Body Dementia and PD are not the same thing, and LBD is not "PD dementia".

Given that even the hyper-bullish Dr C was unwilling to express an opinion on the efficacy of B1 in LBD (notable, given that his body of work suggests that he thought B1 cures or treats all sorts of things), perhaps this thread isn't an appropriate place to promote it (there's every other thread for that, though, evidently)

[dangilio in reply to Hidden]

i spoke with dr costantini about my mom with lewy body and he say to give b1 a try. after about 2 year i can say that when my mom stopped b1 she start to have less energy and more decline

[jeffreyn]

If you type "LBD" in the search box, you will see a few LBD threads to get you started.

[Juliegrace]

My aunt had LBD which was originally treated as PD which ended up doing her harm. Please be very aware that recommendations for PD may not be the right thing for LBD.

[katherinecompton22]

I'm sorry you and your wife are having to deal with this challenge. I have Parkinson's, and my husband has had Lewy Body Dementia for probably 6-8 years. While this site has been invaluable for me, LBD presents different problems that don't always translate to Parkinson's. In dealing with LBD, several facebook sites have been helpful: Lewy Body Support Group; Lewy Body Dementia Caregivers Support Group; LBDA, living Together with Lewy. Health Unlocked has a Memory Support Forum which also includes LBD. Take care.

[EEMaui in reply to katherinecompton22]

Thank you for your references. I will research further about this dreadful disease. Did your husband follow the Bredesen protocol? High dosages of B1?

If so did you notice any improvements from these ?

Thank you

[faridaro]

EEMaui, welcome to the forum!

There is a post (by rhyspeace12) describing how infrared light device helped her husband with symptoms of dementia. I would recommend to read the entire thread/discussion - here is the link

healthunlocked.com/parkinso...

Hope it helps, keep us posted!

[Not4evr]

I have seen tremendous response with 10 to 20 CC of coconut oil twice a day. Severe behaviour disturbance and violence were controlled in a few days. Can be given over cereal or in coffee.

[EEMaui in reply to Not4evr]

Thank you for your response. To date there is no severe disturbances nor violence observed, but I will keep this in mind and maybe start with a low dosage of coconut oil

[Not4evr in reply to EEMaui]

Please do not wait for the behaviour disturbance to occur. Coconut oil can help with other aspects of the disease as well and you will also prevent the behaviour issues from arising.

[dangilio in reply to Not4evr]

also my mom with keto diet and coco .. search for dr mary newport experience about it

[Alex2004]

I'm really sorry to hear of your wife's diagnosis. It is a difficult disease to manage but I have found support and ideas from this forum. My Mum was diagnosed with Lewy Body Dementia 2 years ago and I have been looking for treatments and advice to help my Mum and Dad manage it. Feel free to look at my posts so far as they all relate to this and send me messages if you would like to discuss further. I haven't found much useful information beyond the basics from Lewy Body Dementia sites which is why I too came here. It is true that it is a different disease to Parkinson's but both have some symptoms attributable to misfolded alpha-synuclein.

Well done to you, you've taken the biggest step in helping your wife by asking for advice, knowledge makes such a difference.

[EEMaui in reply to Alex2004]

Thank you for your kind words. I am looking forward to checking your information. Today is my first day as a caretaker and I am encouraged by all the good information and support from this site. I will reach out to you after I read your posts.

mahalo

[gwendolinej]

Welcome to our forum. You will love this site. Everyone is very caring and we have some very knowledgeable and insightful members. Chartist, who I notice has replied to you, is one of the best.

My husband was initially diagnosed with LBD, in 2013. He’s now being treated for PD. There’s no definitive test for PD or LBD (until autopsy), as you probably know. The LBD diagnosis came after he spent a week being observed and tested in the Movement Disorder Ward at the Royal Melbourne Hospital (in Australia). His main symptom then was, we now know, apathy. He was lying on the bed, not interested in anything, very blank.

He then attended The Movement Disorder Clinic, which was a godsend. It meant he didn’t just see one neurologist, but any one of 4 or 5 (and they talk). Andrew Evans, (very well known in PD circles)who has his own practice as well, is in charge.

My husband was on Madapar (levadopa) with no change to his symptoms. After a time, one of the neurologists, after discussion with Andrew Evans, started him on the Neupro Patch. His comment was “I’ve seen it work”. Gradually, over a few months, he improved and returned to normal. The neurologist’s comment ...I’ve seen it work, but never like this. The bottom line is ..don’t accept “the inevitable”.

The patch worked till recently. He then slipped back into his previous condition. After reading reports on this site re research into Mannitol (a diabetic sweetener) for PD, we tried it. And here we are again, he’s functioning. The apathy, dizziness, fogginess, Parkinson’s mask all gone. The neurologist was amazed. He then looked into the research himself and sent us the latest info on the trial being done. Mannitol gets through the Blood brain barrier (BBB). Whether it takes the drugs with it is anybody’s guess. One tbs. in coffee daily is the dose.

The B1 protocol didn’t work for us, but works for a lot of people. The neurologist we now see privately (the one who suggested the Neupro Patch), said of B1, “try it, there’s little research into vitamins, as there’s no money in it”. The same applies to Mannitol. It’s been used in hospitals since the 1950s at least, for brain surgery and brain injuries. No other research till a VIP in Israeli got PD and he picked up the gauntlet.

[Despe in reply to gwendolinej]

Apathy is also a PD symptom. From what I have been reading if dementia precedes PD symptoms, then it is LBD.

[gwendolinej in reply to Despe]

But how do you diagnose dementia. My husband spent 2 months in The Melbourne Clinic being treated for depression, before our wonderful (new) GP twigged that something else was going on. Of course, if my husband (Alan) had had a tremor, it would had been much easier. Our GP sent him to APATT, (Aged Psychiatry Assessment Team), consisting of many "experts", including a psychiatrist and a clinical psychologist. On testing, he had some cognitive deficiencies, which of course could be explained because, besides the apathy, he was in a fog, ( often mentioned by PD members here). APATT sent him to the Movement Disorder ward, and we went from there.

One of the reports from one "expert" to another said that I wasn't prepared to accept the diagnosis. That wasn't true, I don't think? I wasn't convinced, maybe because I didn't want to believe it, or was it because my instincts told me otherwise.

As a scientist I listened to recently said, they still know so little about the brain. How do they know that it's dementia you have, when, as in Alan's case, it was ... what? They got it wrong at the beginning. Cognitively, he returned to normal. They don't have a test that proves its dementia. If they hadn't tried the Neupro patch, and now mannitol, where would Alan have been now I wonder. I'm very thankful that we have a neurologist who has an open mind and doesn't have the mindset of many in the medical profession, where it's very black and white. It can't be when you're dealing with the brain.

I'm very thankful for this site, as it makes you think outside the square.

[Despe in reply to gwendolinej]

"Of course, if my husband (Alan) had had a tremor, it would had been much easier."

Exactly! Tremors at rest (pill-rolling tremor), although not everyone has them, is an exclusive PD symptom. Another LBD symptom is (one of the first ones) hallucinations/illusions and early falls. The patient will be absolutely normal/intelligent one day but not the next.

[EEMaui in reply to gwendolinej]

Thank you so much for sharing. I will continue to dig and try new methods or treatments to help her out

[jeffreyn]

I'm not sure which posts/comments you are finding most useful. Here are a couple more links which may or may not be of interest.

The first one is an article written by the wife of Robin Williams:

n.neurology.org/content/87/...

The second one is a recent thread that may be a bit academic, but you never know:

healthunlocked.com/parkinso...

[jeffreyn in reply to jeffreyn]

This third link should have come up during your search for "LBD", but you may have missed it. It sheds some light on the confusion between the different terms (LBD, PDD, DLB).

healthunlocked.com/parkinso...

[EEMaui in reply to jeffreyn]

Thank you for the links. AS a caregiver it is hard for me to find free time to get to all the threads but I will check them out

[Hidden]

welcome. how did the diagnose when its a postmortem diagnosis? im sorry to hear your news.

[jeffreyn in reply to Hidden]

While that's strictly correct, most neuros won't wait that long. They will give it their best shot ASAP.

But you make a good point. There is no guarantee that the diagnosis is correct.

[EEMaui in reply to Hidden]

My wife was seen by 3 neurologists and 2 psychiatrists. they all point to LBD as probable cause, based on her occasional delusion, and blood pressure variations resulting in a couple of syncopes. She is not hallucinating per se but has some incontinence when she waits too long to go to the toilet. Her memory is sketchy, and she is constantly tired, but some days like today, she appears to be her old self during family dinner

[jeffreyn in reply to EEMaui]

Just to make sure that we are all on the same page, could you describe one or two of these occasional delusions?

[EEMaui in reply to jeffreyn]

most of the delusions I witnessed had to do with archangels visiting her or the visit of a famous motivational author telling her that she is going to be okay. at the hospital she was terrified by the open door for unexplained reasons

[jeffreyn in reply to EEMaui]

Thanks. We are on the same page. I'm no neuro, but it seems to me that they made the diagnosis based on those occasional delusions.

My advice is to keep in mind the experience of gwendolinej (see above), where the diagnosis changed a couple of times. Also, you could try the mannitol that her husband had success with. The recommended dosage depends on weight (too much can cause diarrhea). I'm about 55kg and I take one level tablespoon of mannitol in my coffee every morning.

Good luck. Start a new thread when you have something significant to ask/tell. Old threads tend to disappear off people's radars fairly quickly as new threads constantly appear.

[EEMaui in reply to jeffreyn]

Thank Thank you for your advice.

[gwendolinej]

Hi there again,

I was just reading through all the replies you received. It must give you food for thought, and even hope that your wife has PD, not LBD. I just wanted to add a little bit more information on my husband's initial diagnosis.

After spending a week in the Movement Disorder Ward at the Royal Melbourne Hospital, and being diagnosed with LBD, our GP recommended we try to see Andrew Evans, a neurologist very well known in this area. He has his own practice as well as being in charge of the Movement Disorder Clinic at the above hospital. We couldn't get an appointment for a year, so we saw another similar neurologist (after getting a cancellation). We then attended the Movement Disorder Clinic, where both these neurologists worked. We visited a few times, probably every 2months. The diagnosis didn't change till one of the neurologists decided, after discussion with the other neurologists, to try the Neupro patch.

What I'm getting at is that, if we hadn't been attending that clinic with lots of discussion between those (probably 5 or 6) neurologists, and one suggesting the Patch, I wonder where we would have been now.

We now see one of them privately. He is young, open minded and incredibly caring and it was he that suggested the Neupro Patch. He was mentored by Andrew Evans. He was quite happy for us to try the B1, which didn't work, as it sent his blood pressure through the ceiling. Alan's blood pressure has been a problem from the beginning. He was diagnosed with orthostatic hypotension before the LBD diagnosis. Other times, it's been very high.

We added L-Tyrosine to his supplements a couple of weeks ago, at the suggestion of someone on this site. It is supposed to improve alertness, attention and focus.

Alan is still improving. We, of course, don't know weather the L-Tyrosine, along with the mannitol, is helping, but certainly the Mannitol has been the big game changer, he's been on it for 4 month. I would love to hear that it has helped your wife.

[EEMaui in reply to gwendolinej]

Thank you gwendoline for the followup and added information. Best of luck with your husband progress toward a better life

My wife has been home for a week now and i have been the primary caregiver.

She was prescribed Lorazepam 0.5 mg 3 times a day and Donepezil 5mg once a day. 3mg melatonin to help her sleep and 25 mg of metoprolol for blood pressure.

Since she has been home there has been no instances of hallucinations or REM. She gets confused when she wakes up in the middle of the night to go to the toilet and naps a lot during the day. Blood pressure has been a bit high with an avg 135/85. Except for her continuous fatigue and occasional memory lapses, she acts normal and has stopped using the walker.

At the suggestion of a friend who linked me to this site, I have started her on 1000g/day of B1 since yesterday. Coincidentally perhaps, her blood pressure this morning was 180/93 high, as you indicated in your note. I will continue the B-1 unless the BP remains very high.

I am also giving her 15ml of coconut oil and liquid Turmeric but I do not want to add too many supplements at once to be more informed about the individual results.

I will try to keep track of any progress and report accordingly

[gwendolinej]

I took my husband's B1 dose up to 2000mg very quickly. Blood pressure went up from memory to 228/130. He's now taking 250mg (1/2 a 500mg tab). I'm leaving it there for the time being, may try to raise it slowly later. His blood pressure fluxuates, but seems to be more stable since mannitol, in that it's not dropping below about 110/. It was a big problem, dropping to as low as 85/. Consequently he had a couple of falls.

Do you live on Maui?🙄

You may already know this, but you can send private messages. Someone one sent me one yesterday. I didn't know till then. Must try it when appropriate.

[EEMaui in reply to gwendolinej]

Thank you for the tip on mannitol for low blood pressure control . I will order some and try. Any particular dosage? My wife is only 108 lbs

Also have you heard or tried the Bredesen Protocol? That will be my next approach.

[gwendolinej]

My husband takes 1tbs. of mannitol in coffee, as suggested. He weighs 68kg.