A Ridiculously Late Introduction

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
PeterM
Contributor
Contributor
Posts: 54
Joined: Wed Sep 19, 2018 12:37 pm

Re: A Ridiculously Late Introduction

Post by PeterM »

PeterM wrote:
circular wrote: We're all unique, but I'm pretty confident that my CFS, and it was quite severe, did boil down to an accumulation of various inputs. I suspect mine also started with a viral infection, but once the system is off kilter it doesn't cope with other insults well. My progress, and I think that of others (?), has been gradual as I address everything I can. I'm also often skeptical of needing to do one thing or another, but if I get my doubts out of the way and do what I can, I improve. I went years not making my bed because it was too much extra energy to spend. If I did minimal to moderate exercise I spend the next day feeling awful in bed. I make my bed daily now, am only exercise intolerant due to joint pain I have, but I can walk 20-30 minutes at a good clip and not need to spend the next day in bed. Now I can lift weights when I get home if I want. My overall stress tolerance is better. I only say this to encourage you to keep an open mind, from one skeptic to another ;)

Fabulous that you're constitutionally happy! Bottle and sell that in today's world and you're a very rich person!
Circ, Pardon my not commenting on your own remarkable CFS comeback story! (I was still in the middle of a big family Thanksgiving reunion and was rather unfocused.) That’s so great you were able to tease out many of your CFS triggers and then address them sufficient to make real improvements in your fatigue levels. I’m sure you saw upticks in other areas too. I see from your posts how proactive you are that way. Good for you—and us. Again, thanks for the thoughts. I need to think more broadly. Any magnitude of improvement would be a win.
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: A Ridiculously Late Introduction

Post by circular »

PeterM wrote: Oh, I truly do have an open mind, I’m just a percentage person when it comes to the pocketbook. In fact I would love to win the lottery not to live lavishly but rather to splurge on any number of protocols that are off-label like Ampligen or IVIG. Stuff Medicare and insurance would never cover. But as it stands I’m loath to spend yet more money chasing the dream. Nonetheless, I will look deeper into indoor air pollution. It only makes sense.
I get you there! In fact spending no minor chunk of $ on the IQAir HealthPro Plus was probably my last hurrah since fall of 2017, other than a few direct to consumer labs. Maybe that's why I'm fixated on it, to keep my mind off all the other things I'm not doing :lol: Shallow pockets, or at least a stronger desire to empty them elsewhere, does work well as a skepticism trigger :lol:
ApoE 3/4 > Thanks in advance for any responses made to my posts.
circular
Senior Contributor
Senior Contributor
Posts: 5565
Joined: Sun Nov 03, 2013 10:43 am

Re: A Ridiculously Late Introduction

Post by circular »

PeterM wrote: Circ, Pardon my not commenting on your own remarkable CFS comeback story! (I was still in the middle of a big family Thanksgiving reunion and was rather unfocused.) That’s so great you were able to tease out many of your CFS triggers and then address them sufficient to make real improvements in your fatigue levels. I’m sure you saw upticks in other areas too. I see from your posts how proactive you are that way. Good for you—and us. Again, thanks for the thoughts. I need to think more broadly. Any magnitude of improvement would be a win.
Thanks Peter. It's been a long road and I there are still areas I'd plan to keep improving. In some ways I still have a long way to go, since I don't want to settle for average QOL for my gender and age. It seems to be all about managing inflammation triggers.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
User avatar
TheBrain
Contributor
Contributor
Posts: 1413
Joined: Fri Oct 03, 2014 12:12 pm

Re: A Ridiculously Late Introduction

Post by TheBrain »

JFT wrote:I am prediabetic and have been managing this for many years by diet and supplements. I am constantly being told that I need to exercise more. As I suffer with chronic fatigue, exercise makes me worse. If I over exert, it takes a few days to recover. I know how to pace myself. I recently had a setback. I bought a new Comforter set for my bedroom. I started with a sore throat which developed into a cold, which then developed further into a cough. For the next three weeks my symptoms were so bad I was unable to function properly and one side of my brain felt numb. I can’t go into all the precautions I was taking. One night I went into my bedroom and there was a vice like grip on my throat. I looked at my new comforter and yanked it off the bed and out of the room. I had the best nights sleep for 3 weeks. I was being poisoned by my lovely shiny gold comforter. I am so alergic to toxins, feathers, dust. I was totally off guard. Chronic fatigue is real. I’m not sure how the ApoE gene fits into this. I operate on 30% and miss out on life.
How awful. All that suffering from a new comforter, but what a relief you figured that out. I’m sorry to hear that you operate at 30%.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
User avatar
TheBrain
Contributor
Contributor
Posts: 1413
Joined: Fri Oct 03, 2014 12:12 pm

Re: A Ridiculously Late Introduction

Post by TheBrain »

floramaria wrote:
TheBrain wrote: With treatment, I completely removed that mycotoxin from my body, and repeat testing has showed it to still be gone. That suggests my exposure to that mold was historical.
Hi TheBrain, Did you remove all dietary sources of mycotoxins as part of your treatment? I am still trying to wrap my brain around the implications of recent Shoemaker article that tied elevated urine mycotoxins to dietary intake rather than inhalation. Dr Bredesen says the urinary mycotoxin test is , at present, our best tool to evaluate mycotoxins. Since you have been able to both remove mycotoxins and keep toxins from showing up on repeat testing, I am curious as to whether you have avoided all the known dietary sources, which seems almost impossible, given how widespread they are.
Thanks.
I’ve been grain free (except for quinoa now and then), and I don’t digest nuts well, so I don’t eat them, except for almond flour. I gave up wine because it gives me wicked hangovers (I’ve read that wine can be contaminated with mycotoxins.) However, I can’t imagine my diet is mycotoxin free.

I truly believe that the Stachybotrys mycotoxin I had a high level of came from exposure to a water-damaged building. I have a lot of mold exposure from water-damaged buildings in my past. In my second urine mycotoxins test, that mycotoxin was gone but another one related to Stachybotrys showed up. I was told the body can only process (detox) so much at a time, so it prioritizes its work. With my third urine mycotoxins test, that new one had cleared out of my body. One mycotoxin that hasn’t fully cleared out from my body (Ochratoxin A) is related to Aspergillus mold. In the house I’m living in now (we bought it almost four years ago), we’ve had problems with Aspergillus in the HVAC system in the crawl space, which, of course, contaminates the air in the house. My husband has done a lot to address the issue, but so many buildings in the coastal area where I live have been water damaged. Any home I visit or store I shop in could expose me to mold and mycotoxins.

For my third test, new mycotoxins were tested for, and I was positive on a couple of them. I’ll have to look at my report again to see if food items were possible sources of exposure.

I have a lot of respect for Dr. Shoemaker, but his approach hasn’t always panned out for me. For example, according to his work, my caudate nucleus is atrophied (to a significant degree); this is seen in mold illness. However, per my MRI with NeuroQuant test, my caudate nucleus is above the mean for women my age.
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
User avatar
floramaria
Support Team
Support Team
Posts: 1423
Joined: Tue Jul 04, 2017 11:22 am
Location: Northern New Mexico

Re: A Ridiculously Late Introduction

Post by floramaria »

TheBrain wrote:For my third test, new mycotoxins were tested for, and I was positive on a couple of them. I’ll have to look at my report again to see if food items were possible sources of exposure.

I have a lot of respect for Dr. Shoemaker, but his approach hasn’t always panned out for me. For example, according to his work, my caudate nucleus is atrophied (to a significant degree); this is seen in mold illness. However, per my MRI with NeuroQuant test, my caudate nucleus is above the mean for women my age.
Congratulations on successfully navigating the complex process of eliminating mycotoxins, and on learning that you caudate nucleus is actually not atrophied. I appreciate your detailed answer and description of the stages of detoxification you have gone through, eliminating one mycotoxin after another.
Thank you for sharing your experience.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
Post Reply