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Have you heard of promising research aside for Alzheimer?
looking4relief
Posted: Sunday, December 8, 2019 6:58 PM
Joined: 11/27/2019
Posts: 56


I mean other dementias and neurodegenerative disorders. I can understand why the board of people having dementias is less popular than the board of those who support people living with dementias. For me I needed answers but it's a rough answer that I get here. Altought my body and mind will always remind me something is wrong. For a lot of people living with a highly suspected dementia or a diagnosed one, this place may just constantly place them in front of the fact that they are 'doomed'. With more or less time to live and enjoy. The most disturbing is that there is no chance of recovery, not even a small percentage of chances in which you could invest all your hopes. I am used to having illnesses where hope subsists, even when times are really tough. I still think this message board is useful and provides support from people who understanding you the most but I would understand that in certain situations people would rather spend time with their loved ones or simply not facing the facts. I am myself spending time with the people I care about and making sure everything is best organised, trying to alleviate some of my symptoms and waiting for a potential diagnosis that may or may not be available. I've given warnings of what may come to those I care for, whatever they make of it. I can now let go of some mental pressure while the situation gets more clear. I hope you all have a good evening.
Lane Simonian
Posted: Wednesday, December 11, 2019 11:38 AM
Joined: 12/12/2011
Posts: 4830


In terms of a treatment for dementia other than Alzheimer's disesae, this is the best that I have found over the years.

 2011 Jul;11(3):309-14. doi: 10.1111/j.1447-0594.2010.00687.x. Epub 2011 Jan 28.

Effect of ferulic acid and Angelica archangelica extract on behavioral and psychological symptoms of dementia in frontotemporal lobar degeneration and dementia with Lewy bodies.

Author information

1 Division of Clinical Research, National Hospital Organization Kikuchi Hospital, Kumamoto, Japan. tkimura@kikuti.hosp.go.jp

Abstract

AIM:

The behavioral and psychological symptoms of dementia place a heavy burden on caregivers. Antipsychotic drugs, though used to reduce the symptoms, frequently decrease patients' activities of daily living and reduce their quality of life. Recently, it was suggested that ferulic acid is an effective treatment for behavioral and psychological symptoms. We have also reported several patients with dementia with Lewy bodies showing good responses to ferulic acid and Angelica archangelica extract (Feru-guard). The present study investigated the efficacy of Feru-guard in the treatment of behavioral and psychological symptoms in frontotemporal lobar degeneration and dementia with Lewy bodies.

METHODS:

We designed a prospective, open-label trial of daily Feru-guard (3.0 g/day) lasting 4 weeks in 20 patients with frontotemporal lobar degeneration or dementia with Lewy bodies. Behavioral and psychological symptoms of dementia were assessed at baseline and 4 weeks after the start of treatment, using the Neuropsychiatric Inventory. The Neuropsychiatric Inventory scores were analyzed using the Wilcoxon rank sum test.

RESULTS:

Treatment with Feru-guard led to decreased scores on the Neuropsychiatric Inventory in 19 of 20 patients and significantly decreased the score overall. The treatment also led to significantly reduced subscale scores on the Neuropsychiatric Inventory ("delusions", "hallucinations", "agitation/aggression", "anxiety", "apathy/indifference", "irritability/lability" and "aberrant behavior"). There were no adverse effects or significant changes in physical findings or laboratory data.

CONCLUSION:

Feru-guard may be effective and valuable for treating the behavioral and psychological symptoms of dementia in frontotemporal lobar degeneration and dementia with Lewy bodies.

A trial using Feru-guard (ferulic acid in rice bran and garden angelica) for Alzheimer's disease and vascular dementia just concluded (not sure when results will become available).  If the results are positive, Feru-guard may once again be studied for other forms of dementia.


looking4relief
Posted: Wednesday, December 11, 2019 2:34 PM
Joined: 11/27/2019
Posts: 56


Thank you I had not seen this one. Something that helps me feeling better mentally is cod liver oil altought I'm not sure why.
Lane Simonian
Posted: Friday, December 13, 2019 9:03 AM
Joined: 12/12/2011
Posts: 4830


I just looked up cod liver oil and found that it is high in Vitamin D which is a good antioxidant.  This along with some other compounds in cod liver oil may help with cognition.

I called the Oregon Health and Science University to see when results from the Feru-guard trial would be available but they said they cannot release this information to the public.  I will keep an eye out for it, though.  


looking4relief
Posted: Friday, December 13, 2019 8:10 PM
Joined: 11/27/2019
Posts: 56


I find black cumin helps reviving part of my memory and focus. For my physical symptoms there is not much I can do except that I took CBD on a day I was in a lot of pain. I'm not for taking it but Tylenols have some limits and I cannot take NSAIDs too much as they will worsen my ashtma. I looked up black cumin and saw they are researching it too. Some supplements such as extended relief Vitamin C have an adverse impact on my condition.
Lane Simonian
Posted: Friday, December 13, 2019 8:31 PM
Joined: 12/12/2011
Posts: 4830


If the right dose can be found, the CBD may be better than tylenol.  CBD may not only relieve pain but also help with memory problems.  On the other hand, chronic use of tylenol can potentially worsen memory. 

At high levels, Vitamin C can also act as prooxidant and impair memory as well (you are the first person who has mentioned this being a problem, but I have long suspected that it could be a problem).

Cumin is a peroxynitrite scavenger and peroxynitrite plays a key role in Alzheimer's disease and perhaps in other forms of dementia (such as Lewy body dementia).  

If you don't mind, you can tell me other things that you are taking that seem to be helping or not helping.



looking4relief
Posted: Friday, December 13, 2019 10:35 PM
Joined: 11/27/2019
Posts: 56


I tried mostly anti inflammatory supplements at first: Reishi was useless, if not making things worse, Omega 3 was useless, I didn't notice any benefits from tumeric powder

I think I may have noted some type of benefit with vitamin E.

For my undiagnosed condition L Actetyl Carnitin made things way worse, as well as metronidazole (I thought I had a weird infection that made my brain foggy, I know I'm not supposed to use antibiotics this randomly). 

At the beginning I felt like digestive enzymes helped. Not anymore. Grapefruit seed extract and oregano essential oil didn't help. 

I have an impressive collection of supplements but usually I always find something that helps me with whatever I have in a satisfying way. Not in this case. Also I'm hypersensitive to substances so testing doesn't take long for me. I think my liver is still okay it was not long ago I'm not testing it all in one day. I get the answer I want on wether something will help or not very quickly. 

The number of supplements and various things I have tested really shows the extent of my desperation with this particular illness. There are various causes for dementia so I'm not sure what applies to me applies to all. 


Lane Simonian
Posted: Saturday, December 14, 2019 9:40 AM
Joined: 12/12/2011
Posts: 4830


Thank you very much for the additions.

Tocotrienol Vitamin E is supposed to be better than tocopherol Vitamin E.

Certain essential oils (such as oregano) can potentially increase anxiety (not sure if you had this problem or it just was not effective).  For Alzheimer's disease, at least, certain essential oil can either improve cognition or increase relaxation.  They enter the part of the brain most damaged by Alzheimer's disease (the hippocampus) but they may not help other parts of the brain.  Perhaps that is why they only seem to help those with Alzheimer's disease.

L Acetyl carnitine has been suggested to improve memory, but can have a number of side effects.  I just read about potentially negative effects from metronidazole (you are right about having to be careful with certain antibiotics).  I know some people take resihi for Alzheimer's disease, but you are right too that what may be helpful for one form of dementia may not be helpful for another.

Have you been diagnosed with a particular form of dementia.  I can try to search if there is anything out there for that dementia if it has been pinpointed (sometimes it cannot be pinpointed).


looking4relief
Posted: Saturday, December 14, 2019 11:36 AM
Joined: 11/27/2019
Posts: 56


I no longer think  what I have corresponds specifically to Alzheimer. I am afraid it would be more likely a prion disease. I would rather be completely wrong than being this sick. Anyways that being said I haven't read about any particular natural treatments for those diseases. Only narcotics, clonazepam, seizure meds etc. A naturopath told me I may want to try an anti inflammatory diet without gluten or dairy products. That it could alleviate symptoms. However I'm losing weight and this would make me lose more so I'm not sure. I don't have any weight to lose now. I need to eat consistent food to try to maintain it. I've read something about a ketogenic diet for neurodegenerative disorders but I don't remember the outcomes.

I thought the other day I could calm down part of my neuropathic feelings and pains with an SSRI. The SSRI increased my pain physical pain by a hundred times even if it was a small fraction of a minimum dose. I can have periods of anxiety so I thought psychoactive meds could ease some of the symptoms. Things that interfere with my neurons worsen my symptoms at this time, that's my conclusion anyways. Even something like an ativan. It makes me feel even weaker. CBD gives me much better results but I'm not taking it regularly. I'm not sure I should make this a habit. Maybe it could slow down my metabolism slightly so I would lose less weight. The Alzheimer friend of my grandmother told me I'm very thin lol.. I've read what you did with essential oils to alleviate your mother's symptoms I think it's great. 


Lane Simonian
Posted: Saturday, December 14, 2019 12:59 PM
Joined: 12/12/2011
Posts: 4830


It does not appear to be Alzheimer's to me either.  I would not think it is some form of prion disease either as those are usually very rapidly progressing.

I probably would not go on a gluten free diet either.  I was forced to go off wheat a few years back (perhaps do to pesticide buildup in my body) and lost forty pounds in two months (although I gained a considerable amount of it back).  For those of us with gluten or wheat allergies, it usually does have an eventual impact on memory, but in most other cases it is not worth it (especially in your case as you cannot afford to lose any more weight).

That is interesting about the SSRI.  I just read, though, that some people report cognitive problems while on SSRIs.  

I don't know if you have read any of alz+ posts on CBD oil.  She did a very good job of chronicling her experiences with it--almost all of which were positive.  

Lavender, lemon balm, patchouli, rose, and sweet orange are some of the best essential oils via aromatherapy for treating mild to moderate anxiety.

Thank you for reading about my mother and for the kind comment.  In some areas her memory improved and in some areas it did not; same with various aspects of daily living (much more comfortable with showering, but worsening incontinence, for instance).  But overall, she had a relatively happy and good existence for the last five years of her life.


looking4relief
Posted: Saturday, December 14, 2019 3:58 PM
Joined: 11/27/2019
Posts: 56


I have a lot of allergic sensitivities but it never happened to me to have this level of confusion. I'm not sure it could be related. I noticed some days I'm a lot more confused than others. Also while I was working my confusion was much more noticeable since I had so much more to process. I just hope it goes away, along with the physical weakness and atrophy. I have some periods where I feel a lot of nerve pain. I'm not on any SSRI right now but I took some years ago when I was more anxious. In some people it numbs physical pain that's where I got the idea of trying. It worsens my pain so it doesn't look worth it. I also sleep well and a lot. My vision is a bit of a challenge I was supposed to get it tested to see if something is wrong but it's just an other expense while I'm not working. Essential oils are very fashionable now maybe if I get my hand on a diffuser I will give try it for fun. I'm a bit more relaxed than last week as I'm waiting for some tests that could enlighten me about my condition. If it doesn't go away knowing what it is would be really nice.
Lane Simonian
Posted: Sunday, December 15, 2019 9:52 AM
Joined: 12/12/2011
Posts: 4830


A diffuser works well for relaxing essential oils, but putting a few drops on a cotton ball is probably just as effective.  Putting essential oils directly on clothing, pillow cases, or bed sheets sometimes causes staining.

I missed a few things that I should have picked up on much earlier.  I should have seen you don't have a specific diagnosis.  There are several people here in the same boat and it has caused them additional anxiety.  

There are connections between both digestive problems as well as various autoimmune diseases and cognitive problems.  Not sure if either are present in your case.

Asthma can contribute to cognitive loss.  LarrytheRunner (who does not have asthma) says that Montelukast (Singulair) has helped clear his brain fog.  I have a feeling the drug does not have widespread application, but may help those with asthma and cognitive problems.

Ketones can potentially help with cognitive problems.  A ketonegic diet, however, is very restrictive.


looking4relief
Posted: Monday, December 16, 2019 9:53 PM
Joined: 11/27/2019
Posts: 56


I can at least say I managed to ease some of the symptoms with the help of supplements and occasional CBD. Altought it doesn't change the course of things it provides me a greater level of comfort. Along with a lot of rest. I'll keep trying to get a diagnosis..
HowDoYouDeal
Posted: Thursday, December 19, 2019 7:19 PM
Joined: 2/17/2019
Posts: 347



HowDoYouDeal
Posted: Thursday, December 19, 2019 7:20 PM
Joined: 2/17/2019
Posts: 347


Row Saved Status Study Title Conditions Interventions Locations 1 Recruiting Brain Stimulation for Neurological Patients
  • Alzheimer Disease
  • Device: NEUROLITH
  • Medical University of Vienna
    Vienna, Austria
 Images from a page for the Neurolith, a NON- Surgical
device being clinically tested in Vienna Austria.  You don't even need to have your hair shaved.

 

https://www.clinicaltrials.gov/ct2/results?cond=&term=neurolith&cntry=&state=&city=&dist

  
 

Transcranial Pulse Stimulation (TPS®) for the stimulation of brain regions in patients with Alzheimer's disease

Product video MASTERPUL ONE


Applied knowledge in neurology – The TPS® method of action

The key mechanism induced by TPS® is mechanotransduction. The stimulation of growth factors, primarily VEGF3,4, not only improves cerebral blood flow, but also promotes the formation of new blood vessels (angiogenesis) and nerve regeneration. An additional effect is the release of nitric oxide (NO)5, which leads to direct vasodilation and improved blood circulation.TPS® enables targeted stimulation of cerebral regions.

TPS® enables targeted stimulation of cerebral regions.

Biological effects of TPS®

  • Mechanotransduction6
  • Increase in cell permeability7
  • Stimulation of mechanosensitive ion channels6
  • Release of nitric oxide (NO)5, which leads to vasodilation, increased metabolic activity and angiogenesis and has an anti-inflammatory effect
  • Stimulation of vascular growth factors (VEGF)3,4
  • Stimulation of BDNF8
  • Migration and differentiation of stem cells4,6

TPS® can stimulate deep cerebral regions, reaching as much as 8 cm into the brain. Owing to the short duration of the TPS® stimulation, tissue heating is avoided. The pulses applied to the treatment area thus develop their maximum clinical effectiveness. TPS® treatment is performed through the closed skull. The patient is not immobilized during the treatment and able to move freely. TPS® treatment has been shown to significantly improve CERAD test performance and to reduce Beck’s depression index in patients with mild to moderate dementia. Over 1500 treatments have already been performed using the NEUROLITH® system.

Advantages of TPS®

  • 6 treatment sessions in 2 weeks
  • Outpatient treatment (30 minutes/session)
  • Painless and without side effects
  • Personalized treatment based on MRI data
  • Adjuvant cognitive training not required
  • Shaving of the scalp not required
  • No immobilization of the patient during treatment

BodyTrack® – Treatment documentation in real time

Real-time tracking of the handpiece position enables automatic visualization of the treated regions. The use of personalized MRI data allows specific characteristics of the patient’s brain to be taken into account. Every time the handpiece position changes, the visualization of the target regions in the loaded MRI scans is automatically updated. The energy applied is highlighted in colour. The BodyTrack® software is a unique tool for the visualization and control of the TPS® pulses applied and of treatment progress.


Larrytherunner
Posted: Saturday, December 21, 2019 9:22 AM
Joined: 2/26/2016
Posts: 219


I have been taking the inexpensive anti-inflammatory drug montelukast (Singulair)for almost four years, and my extreme mental fatigue and occasional confusion were completely gone within a week of starting. I can't guarantee that it will work for you, but you can only know if you try. It is a very safe drug for adults, used by millions for over twenty years for asthma attack prevention. It is most effective if taken 10 mg at least twice a day. Once a day does not appear to be effective. I myself have been taking it three times a day.

As I have said in earlier posts in the clinical trial board, Emory University in Atlanta, GA recently started a FDA clinical trial with this drug for early stage Alzheimers. It is being sponsored not by a drug company but rather by Emory itself. Emory is paying out millions of dollars for this trial. It is very rare for a university to pay for a FDA trial, so evidently their researchers have confidence in a good outcome.

I like reading about the new drugs being considered as treatments for Alzheimers, but even if any of these drugs ever make it through the FDA trials, which they rarely do, they won't be available for many, many years. A lot of information about these drugs in news articles originate from news releases from the drug companies themselves, who are seeking higher stock prices and more investors, so you will get a lot of positives and few negatives. 

As far as food suppliments and natural remedies, almost all of the studies and so called clinical trials are run by the marketing companies themselves or contracted out by them. You will rarely ever see any FDA supervised trials for these products. 

You can try montelukast now for a few weeks to a month and see if you get any benefit, or you can wait a year or more for the Emory trial to be completed.

I am a retired American living in Ghana where montelukast can be bought without a prescription. You may have better luck getting this drug from a primary care or family practice physician. People tell me it is very difficult to get a prescription for this drug from a neurologist. Good luck.


looking4relief
Posted: Saturday, December 21, 2019 10:06 PM
Joined: 11/27/2019
Posts: 56


I have a yearly prescription of Montelukast 10mg for my allergies sometimes I skip taking it but I could take it everyday. I find some supplements help my mental confusion. For Montelukast it's harder for me to tell since I've been taking it most of this last year. I'm glad it has this positive effect. It is anti inflammatory and prevents part of the inflammation due to the allergic chain reaction in your system.p
looking4relief
Posted: Sunday, December 22, 2019 7:59 PM
Joined: 11/27/2019
Posts: 56


I was taking something that lowers the IgE in blood (at the base of the allergic chain reaction), and thus decreased allergic inflammation. However IgEs have some other uses in your immune system and I'm not sure it's always good to mess with it, always depends on cost/benefits. For neurological illnesses or whatever has the same symptoms I don't think it would be any help. I don't see any benefits on the days I take antihistamines either. Montelukast is a Leukotriene inhibitor it's different I don't know why it helps people with alz. I did find that anything inflammatory in general worsens my symptoms, ex: alcohol, not sleeping during the night or sleeping very late, exhaustion, random health issues, my immune system being distracted, etc. I try be as rested and healthy as I can at this time... 

Knowledge about neurology doesn't appear so advanced and I think some diseases carry the same label as others while they may not be exactly the same. Maybe there are various subtypes of Alzheimer we don't know about, that evolve in different ways, and for which treatments could differ. I don't really know I'm just supposing knowledge could be more detailed, like everything else. Something I don't like about medical science is that it always assumes nothing else exists outside of what is already known in text books. 

I have read something regarding the effect of magnetism on dementias. I was feeling a bit better after my MRI, I'm not sure why (maybe partly because I was relieved after having it). I have seen one article about it. For me it's just a lot of try and mistakes. I'm trying to make myself the most comfortable..


Larrytherunner
Posted: Monday, December 23, 2019 2:08 PM
Joined: 2/26/2016
Posts: 219


Looking4relief. I am not a scientist so I can't give you the scientific details why montelukast works for some people with Alzheimers and other dementias, and why other anti-inflammatory drugs don't. But in my experience, it works as far as eliminating my extreme mental fatigue and occasional confusion. It works for me, it has been proven very safe for adults, it is cheap and it is available.

 

I suggest you not seek drugs and treatments that probably won't work, may not be safe, and should they ever become available, you will have to wait many years and they won't be cheap.

 

Take one 10 mg tablet at least twice a day and don't skip days. You are to lucky that you have a prescription, so take advantage of it.

 


looking4relief
Posted: Monday, December 23, 2019 8:59 PM
Joined: 11/27/2019
Posts: 56


I didn't know you took 10 mg twice a day I thought the maximum recommended dose was 10 mg. I heard it is a bit rough on kidneys but I took 20 mg for weeks at a time in the past and it wasn't really harmful.
Larrytherunner
Posted: Wednesday, December 25, 2019 4:24 AM
Joined: 2/26/2016
Posts: 219


Montelukast (Singulair) is well tolerated and there are no warnings for kidney side effects. I think you are thinking about Nonsteroidal Anti-inflammatory Drugs (NSAIDS) like Ibuprofen (Advil, Motrin), acetaminophen (Tylenol), Naproxen and others, which have warnings about kidney damage with high dosages and long term use.
looking4relief
Posted: Saturday, January 4, 2020 8:46 PM
Joined: 11/27/2019
Posts: 56


I only noticed a feeling of enhanced mental clarity when I took 20 mg a day. When I think again about it I had already noticed the effect before I had my memory/cognitive issues. I wouldn't be able to get a 20 mg a day prescription I will stick to 10 mg.. believe there is a message board here somewhere about good habits someone with dementia should have. I just don't remember how people call it.. I've taken garlic today  I saw somewhere on these boards it helps too. How I'm not sure.. I do agree with some news articles however that many supplements or tricks advertised to fight memory loss and cognition issues do nothing.
Lane Simonian
Posted: Saturday, January 4, 2020 11:18 PM
Joined: 12/12/2011
Posts: 4830


Some people with dementia on these boards advocate for Best Practices, which includes moderate exercise, social engagement,  and a diet high in antioxidants (such as a Mediterranean diet with fruits, vegetables, and spices such as garlic).  Not all antioxidants help improve cognition for various reasons (they don't reach the brain in high enough concentrations, they are rapidly excreted, they may sometimes become prooxidants), but it is likely that the best antioxidants will be part of the key to treating various forms of dementia.


Lane Simonian
Posted: Saturday, January 4, 2020 11:24 PM
Joined: 12/12/2011
Posts: 4830


Here is an article on some of the spices which may help ameliorate cognitive problems (or at least in the case of Alzheimer's disease):

Possible Role of Common Spices as a Preventive and Therapeutic Agent for Alzheimer's Disease

For centuries, spices have been consumed as food additives or medicinal agents. However, there is increasing evidence indicating the plant-based foods in regular diet may lower the risk of neurodegenerative diseases including Alzheimer disease. Spices, as one of the most commonly used plant-based food additives may provide more than just flavors, but as agents that may prevent or even halt neurodegenerative processes associated with aging. In this article, we review the role and application of five commonly used dietary spices including saffron turmeric, pepper family, zingiber, and cinnamon. Besides suppressing inflammatory pathways, these spices may act as antioxidant and inhibit acetyl cholinesterase and amyloid β aggregation. We summarized how spice-derived nutraceuticals mediate such different effects and what their molecular targets might be. Finally, some directions for future research are briefly discussed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5320868/


looking4relief
Posted: Thursday, January 9, 2020 5:13 PM
Joined: 11/27/2019
Posts: 56


Thank you for sharing.


Marta
Posted: Tuesday, January 14, 2020 7:40 PM
Joined: 6/3/2013
Posts: 901


Larry. Acetaminophen is not an NSAID.
Larrytherunner
Posted: Tuesday, January 21, 2020 11:02 AM
Joined: 2/26/2016
Posts: 219


Thanks for informing me. I looked it up and acetaminophen (Tylenol) does not have any anti-inflammatory properties. But it should be used with caution when taken long term or in high doses. It is the leading cause of drug induced acute liver injury in the US.

 

 https://health.ucsd.edu/news/features/Pages/2018-07-09-otc-protect-your-liver-from-acetaminophen.aspx


subfor
Posted: Tuesday, March 10, 2020 2:32 PM
Joined: 3/10/2020
Posts: 3


Have you ever heard about Dr Shultze treatment?
He uses gut and kidney detox protocol with herbs, a much better diet, and high amounts of cayenne/habanero+ginkgo biloba+rosemary(plus some other herbs) to reach quite effective treatment. Free ebook is called Dr Shultze "Dr. Richard Schulze - S-Y-L User Manual". Great great info. Really recommend reading it.
subfor
Posted: Tuesday, March 10, 2020 2:37 PM
Joined: 3/10/2020
Posts: 3


Also recommend turmeric powder (preferably organic) (made into "golden turmeric paste"- google or youtube recipe).
3 grams of turmeric powder(not extract) per day really helps in long term. Do not underestimate it.

Ceylon cinnamon could be useful in long term too(it must be CEYLON cinnamon). Also needed around ~3 grams per day. 5 days use, 2 days break.
Marta
Posted: Tuesday, March 17, 2020 1:20 PM
Joined: 6/3/2013
Posts: 901


Montelukast comes with a black box warning regarding cognitive and mood changes, including suicidal behaviors.