Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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jaima
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Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Post by jaima »

Hi
I heard one of the talks - Julie Gregory's - in the recent Alzheimer's talks and was so glad this site is available! I'm in CO (former east coaster) and I've been dealing with CIRS and dual C677t gene issues after mold poisoning (and all the other dominoes) for decades. I recently lost my mom to dementia. I have a teen daughter and am a single mom. Now at 53 it's time to deal head on with APOE4.

I haven't delved into the info on this forum yet but just from my experience feel so strongly that mold is one of the biggest issues underlying so much of the gene expressions that trigger illness. I put together a blog to help others after I learned so much the hard way but I need to update it, it's been years. All my health issues kicked in after living with toxic mold then it was sicker quicker with each exposure. For me, and others I met, stabilizing has meant getting away from the mold sources, my belongings sadly, too, and then detoxing the heck out of my body and building a nontoxic home away from a lot of ick were key. However I tripped into CIRS and that and hypermold sensitivitity has never left. So I also learned to really clean my enviro and body of exposures to chemicals. Now I know I'm starting to have the early warning signs for dementia and I want to take this head on. So grateful to learn from the work you've all done already - thank you.

I am curious about some of the baseline testing people suggest to do. And diet is the biggest hurdle for me so I appreciate any tips that make it easy. I do the organic etc thing, but boy I crave carbs and sugar and know it has to go!
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floramaria
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Re: Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Post by floramaria »

jaima wrote: Mon Jun 27, 2022 5:24 pm Hi
I heard one of the talks - Julie Gregory's - in the recent Alzheimer's talks and was so glad this site is available! I'm in CO (former east coaster) and I've been dealing with CIRS and dual C677t gene issues after mold poisoning (and all the other dominoes) for decades. I recently lost my mom to dementia. I have a teen daughter and am a single mom. Now at 53 it's time to deal head on with APOE4.

I haven't delved into the info on this forum yet but just from my experience feel so strongly that mold is one of the biggest issues underlying so much of the gene expressions that trigger illness. I put together a blog to help others after I learned so much the hard way but I need to update it, it's been years. All my health issues kicked in after living with toxic mold then it was sicker quicker with each exposure. For me, and others I met, stabilizing has meant getting away from the mold sources, my belongings sadly, too, and then detoxing the heck out of my body and building a nontoxic home away from a lot of ick were key. However I tripped into CIRS and that and hypermold sensitivitity has never left. So I also learned to really clean my enviro and body of exposures to chemicals. Now I know I'm starting to have the early warning signs for dementia and I want to take this head on. So grateful to learn from the work you've all done already - thank you.

I am curious about some of the baseline testing people suggest to do. And diet is the biggest hurdle for me so I appreciate any tips that make it easy. I do the organic etc thing, but boy I crave carbs and sugar and know it has to go!
Hi jaima, Welcome! I am so happy that you found our site through one of Julie's talks. It is a very supportive community, sharing resources and experiences; with the experiences you have had with mold and CIRS, you have a lot to contribute to the discussion in those areas.
Detoxing from mold is a long and difficult journey, often including, as it did for you, having to leave the moldy environment and possessions behind. Congratulations for all the work you have already done to heal yourself including building a safe non-toxic home. You will probably be happy to know that you've already tackled the absolute hardest part of a comprehensive program for longterm cognitive and physical health health!
It will be exciting when you can have a chance to update your blog and share.

Compared to what you've been through, changing your diet is a breeze!
In terms of making changes like giving up carbs and sugar there are many approaches, and none is really better than the other. It is really a matter of what works best for you. For some people it is easiest to "cold turkey" on any processed foods/ refined carbs. Some people give up that category and also grains at the same time. For others, a step at a time works best, gradually reducing and cutting out certain foods.
Personally, I found it easier to take everything away at once because my nature is if I had "a little", it triggered wanting a lot! Once I got solidly into ketosis and got my blood sugar into a good range, which was my goal, I was able to add back smaller amounts of many of the foods I'd eliminated and still be able to get into ketosis easily.

Clearly, with what you've already accomplished, you have a great deal of determination. You can experiment to see what approach works for you. If you are interested in achieving insulin sensitivity, you'll want to test fasting insulin, fasting glucose and Hba1c.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
Attabeth
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Re: Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Post by Attabeth »

jaima wrote: Mon Jun 27, 2022 5:24 pm Hi
I heard one of the talks - Julie Gregory's - in the recent Alzheimer's talks and was so glad this site is available! I'm in CO (former east coaster) and I've been dealing with CIRS and dual C677t gene issues after mold poisoning (and all the other dominoes) for decades. I recently lost my mom to dementia. I have a teen daughter and am a single mom. Now at 53 it's time to deal head on with APOE4.

I haven't delved into the info on this forum yet but just from my experience feel so strongly that mold is one of the biggest issues underlying so much of the gene expressions that trigger illness. I put together a blog to help others after I learned so much the hard way but I need to update it, it's been years. All my health issues kicked in after living with toxic mold then it was sicker quicker with each exposure. For me, and others I met, stabilizing has meant getting away from the mold sources, my belongings sadly, too, and then detoxing the heck out of my body and building a nontoxic home away from a lot of ick were key. However I tripped into CIRS and that and hypermold sensitivitity has never left. So I also learned to really clean my enviro and body of exposures to chemicals. Now I know I'm starting to have the early warning signs for dementia and I want to take this head on. So grateful to learn from the work you've all done already - thank you.

I am curious about some of the baseline testing people suggest to do. And diet is the biggest hurdle for me so I appreciate any tips that make it easy. I do the organic etc thing, but boy I crave carbs and sugar and know it has to go!
Hello Jaima,

Welcome! I am so glad you have found this site. I am very sorry for the loss of your mom. It looks like you have been on a very long journey to get your health back. I'm excited to hear what you have to share and I hope that you find this forum to be helpful and informative as you continue on your way to better health. I feel like we have so much in common as I have also been on a health journey for many years and feel like I have "learned so much the hard way". I am about your age and have 2 teenage girls. I have also been trying to detox my environment and home for their health as well. I can already see their health damaged by poor diet and a toxic environment because I didn't know all of these things when I was pregnant and as they were toddlers and small children. As you know, trying to get a teenager to eat healthy and avoid toxins is not the easiest thing, especially when we are still struggling ourselves.

It looks like floramaria had some great advice on basic labs and diet. I also believe that going "cold turkey" is the best approach for processed carbs/sweets, but for me I could not get over my strong desire for sweets. What worked for me was finding some delicious recipes for desserts and snacks using natural sugars like honey, dates, and even some maple syrup. I found that small amounts of these homemade treats would satisfy me and would not leave me craving more as all of the processed sweets did. After some time, my cravings diminished and for the most part, I only need a couple of squares of a high quality dark chocolate for dessert. I never thought I would see the day that I could pass up some cookies, cake, or doughnuts at work and not even be sad about it, but I did. Maybe this approach would help you?

I'd also like to point you to some links that might be helpful as you explore the site further.
The Primer includes researched-based prevention strategies.

Some helpful tips and tricks to navigate the site include the How-to Guide. This guide is a great resource I found helpful when I started posting. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response. It really helps to keep the conversation going.

If you would like to tell us more about yourself or interested in learning more about other members check out Our Stories.

If you decide to update your blog, please share it with us as I would love to check it out. Your dedication and determination to improve your health will continue to serve you well on your journey and what a wonderful example for your teenage daughter! I look forward to hearing from you again.

Be well,
Beth
jaima
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Re: Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Post by jaima »

Thank you so much for the responses and feedback. I will look into the labs and agree cold turkey also would be best for me. I have been camping a lot so that has been a big challenge to do during that, too.

Thank you also for the links. I was also wondering if anyone knows good practitioners in or near Boulder, CO that - this is the catch - are affordable. I'm a single mom now and finances can be a tough challenge, too.

I am seeking help (looking) to create a website now - I locked up a name and am just not great at the technology.

I will look at the links then might have more questions of key things to do. The keto diet is all new for me! Thank you for the help!
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Re: Intro - 53 yo mom with dual APOE-4 and CIRS wanting to do all I can to prevent AD

Post by NF52 »

attabeth wrote:
jaima wrote: Sun Jul 10, 2022 2:02 pm Thank you so much for the responses and feedback. I will look into the labs and agree cold turkey also would be best for me. I have been camping a lot so that has been a big challenge to do during that, too.
Thank you also for the links. I was also wondering if anyone knows good practitioners in or near Boulder, CO that - this is the catch - are affordable. I'm a single mom now and finances can be a tough challenge, too.

I am seeking help (looking) to create a website now - I locked up a name and am just not great at the technology.

I will look at the links then might have more questions of key things to do. The keto diet is all new for me! Thank you for the help!
Hi Jaima,

I've "quoted" Beth ("attabeth") so she gets an email notification of your very kind reply to her. If you want to be sure someone sees your reply (especially if you're asking a question), just start by clicking on the large quotation mark in the upper right hand corner of that person's post. That brings over their whole post to a "Posting/Editing" page in a text box, and then you can write your reply below and hit "Submit" and your post goes public and they get an email with a link to your reply. You probably got an automated email with a link to this reply, since I used the quote.

A couple of suggestion on finding a practitioner near Boulder that is affordable: mostly they come under the "think outside the box" category:
1) You can find practitioners who have asked to be listed on our Wiki or have been recommended by members here:
ApoE4-Aware Healthcare Practitioners I suspect that most functional medicine practices are not able to accept insurance, because it doesn't cover the time they spend with patients. However, it doesn't hurt to ask if they have sliding fee scale.
2. You can also find practitioners in the Boulder area using the Search tools in this wiki: Searching for a Healthcare Practitioner. As with the FM doctors, you may have to call around to see if they accept your insurance or have sliding fees or payment options.
3. You might consider using a Functional Medicine Certified Health Coach. Here's the description of what a health coach does from our wiki and a list of health coaches who have submitted their info to us. ApoE4-Aware Health Coaches
Health coaching is a client-centered process in which the client determines their own path and the coach provides the support and encouragement to make positive and lasting lifestyle changes. Coaches guide the client to create a vision for their health and help them set goals to achieve that vision. Coaches can supply information and education, work with clients to explore options, brainstorm, prioritize, set goals, help them stay accountable, explore barriers, and celebrate successes. For improving or preventing cognitive decline, health coaches can support clients as they learn about healthier lifestyle options and work to improve their diet, exercise, sleep, relaxation, social engagement or any other habits to reach their health goals. Note: coaches will most likely will not be physicians, physician assistants, or nurse practitioners, so will not be ordering or interpreting lab tests, or prescribing medicine.
[Note: Appearance in any of these lists does not imply endorsement by apoe4.info.]
4. You might want to use the Primer as your own medical guide, since it was written by a family physician who is only a few years older than you and is ApoE 4/4. Her advice is both wonderful and free!
5. You might want to talk with your ob/gyn about hormone replacement therapy, which has been shown in numerous clinical trials and in re-analysis of prior studies to show great promise for protecting women from the loss of estrogen, which is used in the brain, not just the reproductive system!

Finally, as a Moderator, I have to applaud your interest in staring up a new website to help others--but also have to remove your link to your old blog. One of our Community Guidelines is "Trust: ...Do not self-promote or advertise. Even when a blog is free, it can be viewed as self-promotion. We wish you the best in finding some tech help in your new venture--lots of young techies out there eager to show their skills--but hope you understand that we can't bring it into our forum.

Enjoy those teenage kids--they turn into amazing adults before you know it (although some days I couldn't wait!)

Nancy
4/4 and still an optimist!
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