Not doing too well....

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
James
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Re: Not doing too well....

Postby James » Wed Nov 13, 2013 5:40 am

lol wrote:My mother is a person to emulate. This is her living plan:
You need something to love, something to do, and something to look forward to.
And she loves her own company. That is big.
She is interested in many different types of people.
She prides herself on having a positive nature.
I hope to grow up to be like her some day, but I have a long way to go. :roll:

This is excellent, and something I've increasingly subscribed to as time goes by. Thanks for sharing!

Gilgamesh wrote:Plus, a bunch of little things -- I mean really little things -- have gone right: my two iHerb orders arrived earlier than planned, with nothing damaged, and no duties or taxes imposed. And the twenty avocados I bought on sale last week have been ripening exactly on schedule! :)

The little things matter a lot! There's always something to be positive about, it just depends on what you focus on at any given moment. I've implemented a sort of gratitude journal and positive psychology, and both have paid back far more than I've put in. There's also something ridiculously gratifying about little things like buying a bunch of produce and having it all ripen exactly when you want it to.

Silverlining wrote:Hey friends...the storm is still raging around me, but I'm righting my own personal ship, which can seem selfish; however so many inner circle family members rely on me for emotional and physical support, that it's okay to get "me" right. Thanks so much!

Gilgamesh wrote:Silverlining: yes, one must right one's own ship! I'm focusing on that now, finally. The most beloved people in my life understand; others, not, but that's OK.

Too true. It can seem selfish at times, and lonely, but everyone needs to take their own time and sometimes seek external (non-family/friends) support. I've tried explaining the risk and implications associated with ApoE (among other things), and why certain lifestyle choices are important for me. I get the general support as family is apt to do, but most don't really understand, as is true of most conditions or unique circumstances. Online communities have helped a lot, as well as trying to feel comfortable being emotionally independent in some ways.

Gilgamesh wrote:Got the results yesterday: totally clean!

Very awesome! I'm really happy for you.

Silverlining
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Re: Not doing too well....

Postby Silverlining » Fri Nov 22, 2013 4:52 am

Wow...I've been REALLY challenged on my silverlining theories! I've gone through a pretty rough few weeks with heavy stress involving close family members. Add to that a connective tissue disorder and whacked out hormone fluctuations (age 49) equals some days in bed for me and a pretty bleak mood. It's frustrating when despite all your efforts, you just can't seem to maintain that equilibrium you seek. I'm been beating myself up for taking such a dive, but I guess I need to just roll with it...all of it. Sometimes though, you really wonder what is the point? I mean seriously, when you start contemplating that nothing means anything, you have to end up with everything means something. That's deep, right? Just ruminating friends...realizing I'm in a bad place...concluding there is really nothing to do, but keep putting one foot in front of the other. I have a lipstick message on my bedroom mirror..."focus on the positive"...I'm thinking I should get it tattooed on my forehead! For what it's worth, friends who know me are shocked at the amount of heartache and stress I deal with and state that they could not deal with what I'm dealing with....so I guess that validates me and helps me know that I'm not a wimp, just human. Meanwhile, I'll go post some of my recent Alaska pics in the other forum....they ARE pretty :)

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Re: Not doing too well....

Postby Gilgamesh » Fri Nov 22, 2013 5:21 am

Silverlining,

I've been thinking about you and hoping things were improving. Myself, I got a bit of good medical news (as I mentioned I think): no pituitary tumor, but my hormone weirdness still indicates something is off. Then there's my CFIDS coming back (night sweats getting worse each night...), which scares the hell out of me, fighting with my docs -- who understand neither CFIDS nor the hormonal conseqences of CR -- about testosterone replacement therapy, which I finally decided to try for a couple weeks. But I need to figure out how much it could undo the benefits of CR. So much to figure out. So much time surfing PubMed. Oh, and then there's that APOE thingie....

During really tough times I give in and go on low-dose (20 mg/day) Zoloft for a month or so. Started last week. It helps me, but it’s not a long-term solution.

Anyway, I think about all this, and then imagine what it would be like ALSO to have three children and a parent with health problems. You must be going through hell. Stay strong, as much as possible.

GB

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Re: Not doing too well....

Postby Ski » Fri Nov 22, 2013 8:32 am

GB my endo who is one of the best here and a professor advised me against testo therapy.

You really should give CR a break, eat normally and see what that does before embarking on TT.

He said very few folks actually have a deficiency. Now I won't know my new readings till January but I'm not having the symptoms I was after eating more calories.

Have you tried a shot? It worked short term for me and that was an indication to him that I don't have a true deficiency as the effect is much longer sustained in those that do. You should also really read Chris Kressers take on it. Google "Chris Kresser andropause".

Silver - Hang in there girl!


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Julie G
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Re: Not doing too well....

Postby Julie G » Fri Nov 22, 2013 8:51 am

(((Silverlining))) I know you well enough to know you WILL find your silver lining again. You have blown me away with your strength in light of all that's been thrown your way. And, we've talked about this; dealing with peri-menopausal madness in the midst of your other struggles... THAT, is too much. I'm continuing to send good energy and prayers for you and your brood.

(((G))) So proud of all you've overcome recently. I know you're probably aware of research suggesting SSRIs helps with CFIDS in physiological ways beyond depression...not to mention with your MAO defect, you can be quite low in serotonin in spurts and fits. I agree, it's very difficult to find docs that can weave together all of our complicated health issues. You are very smart to do your own research.

Forgive me for inappropriately adding my issues on to your thread, but I'll give you all a quick update on my recent health struggles. I DO have a pituitary tumor. It's small, 4mm, a microadenoma. I've know about it for about 7 years. Recently, my prolactin levels have doubled causing my docs to think I needed to either consider medication or surgery to deal with it. I got good news about THAT yesterday. The tumor has remained stable in size and, inexplicably, my prolactin levels have once again returned to normal- Yay. (However, the endo is still testing other hormones as my menses have half-heartedly decided to return after several years of confirmed menopause.) BUT, I did get some worrisome news about ANOTHER brain abnormality. I also have a pineal cyst, that I've known about for 20 years. Well, that one HAS gotten bigger, now 1.4cm. It's considered to be quite large and I'm to be on the lookout for hydrocephalus symptoms now :shock: My biggest concern is how THAT will impact my AD risk. The cyst is right in the middle if the brain, semi-blocking CSF flow. We know that's uber-important to clearing out amyloid. Am I subsequently clearing even more poorly due to my impeded flow? Try to find a doc who'll know the answer to that one. Oy vey. In the words of my dear friend, Silverlining, (echoing Dory from Finding Nemo) just keep swimming, just keep swimming. :roll:

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Re: Not doing too well....

Postby Silverlining » Fri Nov 22, 2013 12:07 pm

Well, we're a bit of a mess. GB, great news on the clear MRI scan. I understand your frustration with the doctors, I've been there and am still there :). Re: the Zoloft, are there worries about raising the serotonin and then maybe dramatically dropping when you stop taking it? My last piece of advice...drink a little wine...but that's just me. I can't tolerate wine or beer, but can do an occasional tequila (I'm outed now!).

Julie!!! BAD NEWS on the pineal cyst! I'm sure you're doing your research to see what, if anything, you can do holistically. Are you having symptoms? So sorry to hear this, especially with it blocking some CSF flow. Can Dr. P shed light? Please keep us in the loop.

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Re: Not doing too well....

Postby Julie G » Fri Nov 22, 2013 10:08 pm

Hey, Silver- nah, nothing holistic that I know of... Dr. P saw my MRI when the pineal cyst was 2mm smaller and he wasn't concerned. They rarely get as big as mine and they rarely grow- so I'm probably fine. If you look on the internet, I should be deathly Ill and ready for brain surgery, but I feel ok :D I saw the films. I see how close it is to blocking CSF; that kind of freaks me out. Imagine sucking liquid through a straw with a popcorn kernel blocking it; fluid still gets through, but less and less efficiently. My CSF can't be flushing out my amyloid plaque as vigorously as it would without the cyst. :? Thanks for caring, girlfriend.

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Re: Not doing too well....

Postby Gilgamesh » Sat Nov 23, 2013 12:48 am

Skibike- Wow, thanks for the tip about Chris Kresser! Incredibly useful info!

No, I haven't tried a shot, but my doctor suggested that. I might do it next week.

But once I know the low T is because of CR (as opposed to, say, a dysfunctional hypothalamus caused by CFIDS or something else), the real question is what to do about it. I know several men on extreme CR with testosterone levels well below the reference range who feel fine. They have stellar values (as I do, pretty much) for all cardio and diabetes risk biomarkers of course, because of the CR. The doctors and, especially, gerontological researchers who follow them say there's no health risk with CR-induced low testosterone, and potentially much benefit (the correlation between low testosterone in men and increased risk of Alzheimer's of course doesn't apply to people on CR, just like correlations between bad health outcomes and low thyroid function, high cortisol, etc.). Many of their friends say, ignorantly, "but it's not natural!" But these guys feel great, and the research shows they are aging slowly. My problem is that 1) I don't feel great and 2) I don't know why (might be the low T, might be CFIDS, might be sleep-deprivation, etc.).

Before getting my 23andMe results, I was actually thinking about transitioning to a milder kind of CR, but now going off CR, for me, would mean upping my risk of dementia. I just have to do more experimenting.

J, this is OUR thread, so hijacking in that sense isn't possible. The pineal thing sounds scary. And it's too deep to operate on easily, right? (I mean, if that became necessary.) Silverlining- I'm back to my "a little wine or whiskey" experiment. I don't know. I just like it. Getting tired of pubmedding all my lifestyle decisions....

GB

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Re: Not doing too well....

Postby Ski » Sat Nov 23, 2013 10:24 am

Gilgamesh wrote:But once I know the low T is because of CR (as opposed to, say, a dysfunctional hypothalamus caused by CFIDS or something else), the real question is what to do about it. I know several men on extreme CR with testosterone levels well below the reference range who feel fine. They have stellar values (as I do, pretty much) for all cardio and diabetes risk biomarkers of course, because of the CR. The doctors and, especially, gerontological researchers who follow them say there's no health risk with CR-induced low testosterone, and potentially much benefit (the correlation between low testosterone in men and increased risk of Alzheimer's of course doesn't apply to people on CR, just like correlations between bad health outcomes and low thyroid function, high cortisol, etc.). Many of their friends say, ignorantly, "but it's not natural!" But these guys feel great, and the research shows they are aging slowly. My problem is that 1) I don't feel great and 2) I don't know why (might be the low T, might be CFIDS, might be sleep-deprivation, etc.).
GB


Well thats just it, as my endo told me, some folks have low T and it is fine for them as thats what they've been producing pretty much the whole life. So its natural.

If you're at say 500 and CR causes your T to drop to 250, you are probably gonna feel it and hence its not natural. But thats even if CR is the cause. All I've ever seem to have read about low T, is how bad it is for Alz and heart disease.
So if CR is the cause, continuing to do it when its disrupting your endocrine homeostasis, and taking testosterone therapy seems counter-productive to me. Thats like taking a statin, so you can eat higher fat.

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Re: Not doing too well....

Postby Gilgamesh » Sat Nov 23, 2013 11:36 am

Skibike wrote:Well thats just it, as my endo told me, some folks have low T and it is fine for them as thats what they've been producing pretty much the whole life. So its natural.


Yes, and that might be true in my case. I don't have pre-CR numbers, unfortunately.

Skibike wrote:If you're at say 500 and CR causes your T to drop to 250, you are probably gonna feel it and hence its not natural. But thats even if CR is the cause.


CR itself is not natural. What's natural is eating when there's food in front of you and maturing and having babies as soon as possible, staying alive long enough for the babies to grow up, then dying (in your 40s or 50s). The point of CR is not to be natural in that sense. The subjective experience is great for some, neutral for others, negative for still others. When it's negative, that's where the tough decisions come....

Skibike wrote:All I've ever seem to have read about low T, is how bad it is for Alz and heart disease.


Yup, unless the low T is caused by CR. We don't have the century-long study yet (and never will with any anti-aging regimen), but after 10-12 years on CR, the human subjects on severe CR -- with low testosterone, low T3, high cortisol, low white blood cell counts -- are healthy as horses. (And then there's the animal data -- "unnatural" biomarkers, but they break longevity records for their species.)

Skibike wrote:So if CR is the cause, continuing to do it when its disrupting your endocrine homeostasis, and taking testosterone therapy seems counter-productive to me. Thats like taking a statin, so you can eat higher fat.


Agreed. The question for me is whether my not liking how I feel is caused by something else, like CFIDS, or my horrible problems sleeping -- or by CR (via low T, or, for that matter, some other consequence!) But I think the experiment of backing off a bit on CR is worth a try.

But I have to be prepared for the realization that CR might not be for me, which would be depressing, since it's so obviously the most effective anti-dementia option currently available.


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