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Why when you stop things get worse
Lane Simonian
Posted: Friday, February 27, 2015 10:09 AM
Joined: 12/12/2011
Posts: 5140


One of the few consistent observations about Alzheimer's disease is that when you stop treating it, it becomes worse. Here are some likely explanations as to why.

Drugs that offer symptomatic relief for awhile (Aricept, Rivastigmine/Exelon, and Galantamine)

These are anti-cholinesterase inhibitors. They prevent an enzyme which breaks down acetylcholine. Acetylcholine is the critical compound for short-term memory. The enzyme phospholipase C increases the release of acetylcholinesterases. It also leads to the formation of peroxynitrites which limits the release and synthesis of acetylcholine. If you take these drugs early, you are limiting one of the three problems of Alzheimer's disease and if you stop taking it early on one of those three problems returns. However, as the disease progresses, phosphopholipase C activity in most people decreases and thus acetylcholinesterase activity decreases. In these cases giving people with middle to late Alzheimer's disease anti-cholinesterase drugs has no effect.

Drugs that modify the disease (Namenda/Memantine)

In the middle to late stages of the disease, NMDA receptor activity or non-activity is a major problem. Namenda is a NMDA receptor antagonist. This inhibits the following cycle in many people with Alzheimer's disease: peroxynitrites--NMDA receptor activity--peroxynitrites. If a person stops taking Namenda, this cycle picks up again. However, there are two problems. NMDA is not a particularly effective NMDA receptor antagonist, so it only slows down the progression of the disease. And in some people, peroxynitrite-mediated overactivation of the NMDA receptor leads to underactivation of this receptor. This results in hallucinations. In this group adding a NMDA receptor antagonist such as Namenda may not be a good idea.

Phenolic Compounds that modify the disease (cocoa, pomegranates, peanuts, resveratrol, hops, blueberries, a Mediterranean diet, a diet from India, etc.)

These compounds are all hydrogen donors. They convert peroxynitrites into water and a nitrite anion. The problem is that this nitrite ion combines with hydrogen peroxide (in the presence of amyloid oligomers) to reform peroxynitrites. The good news is that peroxynitrite scavengers are also hydrogen peroxide scavengers. The bad news is that unless you are scavenging almost all of the peroxynitrites and hydrogen peroxide the disease continues albeit at a much slower pace. However if you stop taking these compounds, the disease picks up just where it left off.

http://www.ncbi.nlm.nih.gov/pubmed/12676458

Methoxyphenols for the partial reversal of Alzheimer's disease (eugenol in various essential oils, curcumin, syringic acid, vanillic acid, and sinapic acid primarily)

The advantage of these compounds is that methoxy group not only donates electrons it increases the hydrogen donation capacity of the phenol groups so more of the peroxynitrites are converted into water and the nitrogen anion (ONOO- + 2H+ + 2e-=H20 + NO2-). Water is a de-nitrating agent and hydrogen donation partially reverses oxidation. Nitration and oxidation are what inhibit the transport of choline, inhibit the enzyme which puts acetylcholine together (choline acetyltransferase), and limits the release of acetylcholine. So not only are methoxyphenols highly efficient scavengers of peroxynitrites they reverse a considerable part of the damage that peroxynitrites do to short-term memory. Stop taking most of these compounds and the re-ignition of the disease occurs rather quickly.

I have a friend with Alzheimer's disease. When she stopped taking various herbs and essential oils via aromatherapy for Alzheimer's disease she relapsed quickly. When she was able to start aromatherapy again without the herbs, it was difficult to notice much difference.

This disease likely never goes away completely, as it is probably impossible to scavenge hundred percent of the peroxynitrites and hydrogen peroxide. But the closer you get to the 100 percent, the closer you get to curing the disease.

scma_2007
Posted: Friday, February 27, 2015 1:38 PM
Joined: 9/13/2013
Posts: 112


THANK YOU for summarizing the treatments that are out there.

Can you please tell us what Essential oils (eo) that your friend is using?

Based on your recommendations in several posts, my mother is using:


AM - Black pepper, bay laurel, peppermint, rosemary

PM - Lemon balm, lavender, satsuma (sweet orange), ylang-ylang


I would be glad to add any new eo to cover all grounds.



Lane Simonian
Posted: Friday, February 27, 2015 4:52 PM
Joined: 12/12/2011
Posts: 5140


I am going to double check on the list of essential oils that my friend uses for aromatherapy. I know that my friend has taken rosemary, clove (although some times this is too powerful), and lavender essential oils via aromatherapy. The ones that you are using are good ones.

I was misleading in what I said. She did notice some differences when she stopped taking the herbs particularly in regards to mood. I did not notice any difference in her ability to communicate or short-term memory, but that does not mean there were no subtle declines in these areas. I also think the stage of the disease and the herbs taken make a difference. I think some combination of aromatherapy with herbs high in methoxyphenols such as steamed ginseng (sun ginseng) or aerosolized curcumin would be more effective than any one used separately. And any herb high in polyphenols should in itself slow down the progression of the disease.

Lane Simonian
Posted: Friday, February 27, 2015 11:28 PM
Joined: 12/12/2011
Posts: 5140


Here is a past list of my friend's protocol:

I take 3000mg's of wild alaskan salmon oil

vinpocetine

ginko

ginger

turmeric [piperine in black pepper will increase the absorption of tumeric]

ashwagandha (for mood stabilization)

rosemary

clove

holy basil

gotu kola

bacopa monnieri

cat's claw

sage

lemon balm (for muscle complaints, agitation, sleep, cognition)

chamomile (for sleep and mood)

huperzine A


I also use rosemary essential oil, lavender essential oil (for nervousness and stress), orange essential oil (mood), clove essential oil in aromatherapy

I have switched to an all organic, whole foods diet. Reduced sugar intake. Switched to almond milk over cow's milk, and of course the coconut oil.

One of these days we are going to get to the bottom of what combination of herbs and essential oils via aromatherapy work the best.


scma_2007
Posted: Saturday, February 28, 2015 1:29 PM
Joined: 9/13/2013
Posts: 112



Thank you so much for sharing this list, Lane, and to your friend.

I am glad to see that many of the herbs that help mood and memory can be taken together.
We often wonder if we can put more to my mother's regimen. It looks like we can.

I am familiar with all the substances on the list except for Holy Basil and Cat's claw.
Your friend have done a lot of research.


My mother is taking omega-3 (fish oil), turmeric, r-lipoic acid, (bacopa monnieri, lion's mane - one or the other), resveratrol, lemon balm, astaxanthin, me-B12, D3, and meds Exelon.

With the aromatherapy essential oils (eos), the only one we have not used is clove.

You said -

" I also think the stage of the disease and the herbs taken make a difference. I think some combination of aromatherapy with herbs high in methoxyphenols such as steamed ginseng (sun ginseng) or aerosolized curcumin would be more effective than any one used separately. And any herb high in polyphenols should in itself slow down the progression of the disease."

Yes, I agree with your conclusion. Like many members on this message board who have incorporated Best Practices (include herbs and eos), their condition has stabilized, if not improved.

Thank you for your valuable insight.

For anyone who might be interested on what others have tried, here's the topic link titled
"alternative medicine, supplements, what works for you" initiated by Alz+.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147507611








Lane Simonian
Posted: Saturday, February 28, 2015 5:02 PM
Joined: 12/12/2011
Posts: 5140


Thanks very much for linking to this discussion. It has been very helpful to me and likely has been or will be to many others away. I think everything that you are doing for your mother is good. I do not know the precise interactions of various herbs and essential oils via aromatherapy, but problems in blood clotting may sometimes be a concern. This might, though, be mainly a problem when other "blood thinner" medications are being used at the same time.

My friend has written a long manuscript on herbs (which she sent to me a couple of days ago). I am going to start reading it this weekend. If there is any passages regarding Alzheimer's disease, I will pass them along.

jackalar
Posted: Saturday, February 28, 2015 6:39 PM
Joined: 11/25/2013
Posts: 29


Thank you Lane so much for sharing your knowledge. I will have to reread your first post a few times to even begin to understand it. But I get your last line: 100% compliance is critical! A series of events threw us off course last fall/early winter (including a brief hospitalization for my husband and troubles my son was experiencing). We are back on track and your words will help me keep going.

Lane, just so you know...

You gave me hope when everything I read and heard seemed hopeless. I follow you around the internet to make sure I don't miss a word you say (although much of what you say is WAY over my head, ha ha). As I remember, I first ran into you on Huffington Post. You are the reason I joined this forum.

My father had Alzheimer's and I took care of him. It was a very bad time. No one knew much about the disease back in the mid 80s. When I first noticed symptoms in my husband (at age 59), it was just too much to face. I had a devastating vision because that was my experience for almost a decade. I now know there is another way to travel this journey... largely because of you.

Lane, you continue to give hope via your extensive knowledge and encouraging words.
I cannot thank you enough.

Best to you.

~Jackie



jackalar
Posted: Saturday, February 28, 2015 6:47 PM
Joined: 11/25/2013
Posts: 29


I have no clue why some of my words are highlighted. It was not intentional. I see that happened to scma, also.

~Jackie



Lane Simonian
Posted: Sunday, March 1, 2015 10:40 AM
Joined: 12/12/2011
Posts: 5140


I rarely cry, but these days it is happening more often. I welled up after Still Alice and now after your comments Jackie--sentiments that mean so much to me. I think everyone feels good when they know their work is appreciated but better yet is when their work may actually be doing some good (you are right about seeing my comments on the Huffington post). I have been frequently accused of providing false hope and admonished to leave it to the professionals, but being a very stubborn and determined Armenian I keep pressing forward.

At least, we know more than when your father had Alzheimer's. As difficult as it is now, caring for a loved one back then must have been extraordinarily hard with little to no outside support and even less understanding.

I am glad that things are more or less back on an even keel. With deepest respect for you, your husband, and all the rest of your family.

jackalar
Posted: Sunday, March 1, 2015 10:24 PM
Joined: 11/25/2013
Posts: 29


Lane - I have seen people on another site make rude, sarcastic comments to you... repeatedly. Yet you don’t let them intimidate you. You respond calmly and politely. I can see you are determined and you have the utmost patience!

My hunch is you help far more people than you will ever know.

Thank you for your kind words.

~Jackie

Lane Simonian
Posted: Monday, March 2, 2015 10:04 AM
Joined: 12/12/2011
Posts: 5140


Thanks so much, Jackie. I always try to be polite but some times it is not easy. I laugh about the person who asked if I were just an idiot or a complete imbecile. I was wondering if those were my only two choices--could I be an incomplete imbecile, for instance. I need to laugh about these comments more often rather than internally fuming about them.

This site is my safe haven. With very few exceptions over the years, everyone here is not a harsh critic, but instead trying to help figure out this disease on one level or another. You, Serenoa, scma, Onward, Myriam, Mimi, Iris, Alz+, and many others keep searching for answers and I know the cumulative result is going to be very significant.

Skepticism is good to a degree, but if it leads to all sorts of stones being left unturned then it is an impediment. I just hope that some day the treatments that have helped a few people will help many people.

Serenoa
Posted: Thursday, March 5, 2015 5:31 AM
Joined: 4/24/2012
Posts: 484


Just want to add my thanks for your research Lane. I like what you said:

"I have been frequently accused of providing false hope and admonished to leave it to the professionals, but being a very stubborn and determined Armenian I keep pressing forward."

Do not leave it to the professionals! Value their advise, but get involved yourself, educate yourself and make informed decisions. The professionals can be as wrong as anyone else because they have their own biases and limitations in thinking. As I have studied the research (from professionals), I am amazed at how much knowledge is out there and how little doctors (other professionals) know about it. Often, I believe, it takes a "layman" to solve the puzzle by thinking "outside the box" and making connections that the professionals can't see due to their "tunnel vision." Lane, you are a perfect example of this.