Chronic Inflammation as a contributor to Alzheimer’s

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circular
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by circular »

SusanJ wrote:
circular wrote:I was pretty aggressive with the MARCoNS, at least two maybe three rounds of nasal antibiotics.
Just curious, did you notice any overall improvements to your sinuses, or overall health with the MARCoNS work?
I'm faced with the usual conundrum of probably having changed other things at the same time. I think it did help in the beginning. The first thing to show was MRSA, but on re-culturing there was always something else there. I think much of it may have been innocuous but that first MRSA layer appeared to go away and be a culprit.

That said, I still do get sinus issues some days, but they are usually traceable to histamine from something. I am nowhere near as sick as I was, and it seemed clear that chronic sinusitis played a huge role in my chronic fatigue.

You can also order the kimchi probiotic L. Sakei SD-6853 by Nasobiotex and see if it helps. I think I reacted badly to it a few times but want to keep trying it to see if the connection was true or not. I've been waiting for my life to settle down. My vote would be a round of nasal abx and reculture to see what you get in the way of symptom improvement and other strains, and then L. Sakei regardless of the abx outcome. But do check with your new doctor. Maybe he has a better way to go based on more current information. I know some FM docs were shifting gears on what to do because of the heavy abx use trying to tackle MARCoNS, but I don't think it killed me. I am better.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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SusanJ
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Re: Chronic Inflammation as a contributor to Alzheimer’s

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Thanks, circ. I do plan to followup on our next call.
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Julie G
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Re: Chronic Inflammation as a contributor to Alzheimer’s

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Susan, thanks for your detailed notes. As a fellow CIRS sojourner, I followed with interest. I'm heartened by the fact that none of your inflammatory biomarkers are crazy off-the-charts high but certainly agree that your viral load deserves follow-up.

FWIW, I'm treating my MARCoNS similarly to you and my FMP also thinks it's not a huge deal likely because I only demonstrated a weak biofilm with follow-up testing. In addition to the Biocidin, I'm using a salt packet, a pinch of L-gluatamine, and a 1/4 tsp of kimchi juice. It's been very helpful.

Kudos on "looking under the hood." Keep us posted on your progress. -xo
circular
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Re: Chronic Inflammation as a contributor to Alzheimer’s

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Julie G wrote: FWIW, I'm treating my MARCoNS similarly to you and my FMP also thinks it's not a huge deal likely because I only demonstrated a weak biofilm with follow-up testing. In addition to the Biocidin, I'm using a salt packet, a pinch of L-gluatamine, and a 1/4 tsp of kimchi juice. It's been very helpful.
Interesting, what does the L-glutamine do? This sounds super reasonable if sinus issues haven't been a clear contributor to CIRS. In my case the pressure was causing retracted eardrums, which I should have mentioned.

I used Biocidin too for a time. I asked Dr. Ackerley how anyone knows that it doesn't also kill off good organisms (I'd read a claim that it doesn't) and she said, "we don't." So that kinda worries me for long term use but not short term. I suppose in Julie's case at least it may not be killing off the beneficial kimchi organisms.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by SusanJ »

circular wrote:What is your white matter score and which version of NeuroQuant report do you have? I'm curious to compare our white matter vis chronic inflammation. If it helps you feel better, my amygdala is in the 98%ile on the right side and 84th%ile on the left, for a total of 95.
White matter score: 99 right, 98 left, total 99.
Version 2.3
Julie G wrote:I'm using a salt packet, a pinch of L-gluatamine, and a 1/4 tsp of kimchi juice.
The irrigator I use includes a salt packet. I don't make kimchi, and the ones I've found around here have wheat in them. :shock: So I'll probably look into circ's recommendation on the specific probiotic strain.

Sent off the additional vials for viral testing yesterday. Will let everyone know what comes back. Viruses and I have a long, complicated history. I was surprised not to have HSV -1 or -2 to be honest, but I'll take it. I've been deep diving as time allows to understand better how the immune system deals with viruses. It's both scary and fascinating. Those dang little things are crafty to say the least.
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Re: Chronic Inflammation as a contributor to Alzheimer’s

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TheBrain wrote:
However, she is recommending I do a new mycotoxins test through Great Plains Laboratory. She said if the test is negative, it won't conclusively rule out mold illness, but she wouldn't attribute my current symptoms to mold illness. The test checks for seven different mycotoxins, from four species of mold, in the urine.

The test costs $299 through my FM PA, and insurance won't cover it.
I have been reading these forums for a couple months. Most specifically found online from another thread My !POSITIVE! test results for mycotoxins testing through Great Plains Laboratory.

I feel a connection to many of you, since I have the exact symptoms that many of you have.

Unknown to me, my mycotoxin, aka biotoxin, aka CIRS (chronic Inflammatory Respond Syndrome) began years ago. After being to many different doctors and much research on the internet, I finally narrowed my own diagnosis down to 3 possibilities. I really wish I could locate that doctors website now, but as many of you know brain fog has set in and I cannot seem to find it.

At any rate, based on my symptoms, the 3 possible diagnoses were hyperparathyroidism, lyme disease and mold illness. As this doctor's article explained these 3 have many common symptoms. I asked my Dr. to test me for hyperparathyroidism. He reluctantly agreed. That was negative. So he wanted to test me for Lyme.

By this time in early July of 2019, I had found Dr. Shoemaker's website called Survivingmold.com. I read through everything I could on that and thought that since the VCS test (at vcstest.com) is free (for the first time), then I should give it a try.

I tested positive on VCS test, so I wanted my Dr. to test for biotoxin illness. He refer me to the same test MycoTox Profile test through Great Plains Laboratory.

Lyme Test came back Negative, but the MycoToxin test came back positive. They now test for 11 different mycotoxins, from six species of mold, in the urine.

Of course in my brain fogged state, as I was reading the MycoToxin test report, I initially missed that I was positive for Ochratoxin A. Finally, I had an answer to all my joint pain, muscle pain, memory loss, insomnia, twitching in my sleep, hand numbness, etc. It is very frustrating when doctors tell you that there is nothing wrong, but yet you know there is something wrong.

Here is the most interesting line that I read on my Great Plain Laboratory test results dated 7/16/2019: "Some studies have hypothesized that OTA (Ochratoxin A) may contribute to the development of neurodegenerative diseases such as Alzheimer's and Parkinson's."

Of course my Dr. said he did not know how to treat mycotoxin illness, and I told him that was okay, we could follow the Shoemaker Protocol. I have been on Questran (Cholestyramine) powder since the end of July. That same week I had the Mold Guys come and inspect my home, workplace and camper. The workplace was a problem. About 9 years ago when I bought the building there were termites and the seller had to pay for termite treatment before I could buy the building. How they treat termites is by drilling holes 12" apart in the concrete basement/crawlspace perimeter and shooting their chemical in. When they were done they filled the holes with hydraulic cement. That was all fine. This small basement/crawlspace is not even used and only about 12 x 14'. Probably years ago they had a boiler down there to heat the building.

When the Mold Guys came and opened the floor door to the basement/crawlspace, I could smell it. Apparently through the course of years, the hydraulic cement holes popped and there was some water on the floor. Not a lot, but it was enough that mold was growing in various places. I had to spend thousands of dollars on remediation. The thing I did not think about at the time was that the basement/crawlspace was completely isolated from the remainder of the building. The moldy air from down there did not ever present itself in the main area of the building.

The other thing the Mold Guys did was perform 3 air quality tests. One was from outside for a baseline from the environment, 1 from the front of the building, and a 3rd from the back of the building. All 3 of the air samples collected and sent to the lab came back Not Elevated. Of course, this is for people that have the ability to fight off mycotoxins. According to Dr. Shoemaker’s research, roughly 25 percent of the population is genetically prone to develop CIRS.

However, the air quality report showed that the sample from the back of the building had a Penicillum / Aspergillus spore count that was 9 times the outside baseline. OTA (Ochratoxin A) is within the Aspergillus mold species.

I continued to take the (Cholestyramine) powder and was sure I would get better. My joint pain was much better, but not much else.

I took the vsctest again after 1 month and this time I was worse than I was previously. I was actually STILL being exposed from the back of the building. How could this be? Unfortunately, I did not realize that a large quantity of used broke down cardboard boxes, which original were made in China was the actual source of the OTA (Ochratoxin A) mold. I was a retailer that sold on the internet. I received goods from my supplier in the USA, who sourced the products from China. So, these boxes were made in China a long time ago, then had things packaged in them and were shipped via sea freighter to the USA, then sat in a warehouse in the USA, until I ordered more product from my manufacturer. The Mold Guy told me that when broken down boxes sit for a long time, they will eventually get that mildew smell which is the beginning of mold.

A couple weeks ago, we finally got rid of all those boxes and bought an IQAir Plus. So at this point I have a mold free environment.

Since I have not been getting better cognitively, I insisted that the Dr. do a mercury test. The blood mercury test is used to determine exposure to methyl mercury. However a urine mercury test is used to test for metallic mercury and inorganic forms of mercury such as amalgam dental fillings. From what I have read, inorganic mercury is also converted from methyl mercury by the body and is the main form of mercury in brain, which can lead to dementia, autism, ADHD and more.

Additionally, I paid $377 for a Clifford Dental test at BetterLabTestsNow. The Dental Clifford Materials Reactivity Testing is a lab test that identifies existing bio-sensitivity problems in dental materials. So, the results are that I am sensitive to mercury, and at this point I will need to replace all my silver fillings with composites.

Best of luck to us ALL as we move through the process and share information.
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Lisa G
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by Lisa G »

I feel a connection to many of you, since I have the exact symptoms that many of you have.
Hello Cathy. Thank you for joining our community and for this detailed detective work regarding your mycotoxin situation. I am sure that many here on the site would benefit from reading about your journey to understanding what's been going on with your own health.
Welcome to the site "officially!"
Here are some resources if you haven't stumbled upon them yet. The primer is written by a GP. There is also How to get the most out of the site.. Finally, you seem to have a good working knowledge of technology, but if you need to do some specific searching on this site, you can click on this link.
Again, welcome, and may you be successful in your continued management of your mycotoxin situation.
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by CathyS »

CathyS wrote:
TheBrain wrote:
However a urine mercury test is used to test for metallic mercury and inorganic forms of mercury such as amalgam dental fillings.
An update to the above for levels: A "normal level" of 3 mcg Hg/gm of creatinine or less in urinary excretion. I maintain a toxic 29 mcg Hg/gm of creatinine.

According to https://www.health.ny.gov/environmental ... posure.pdf (bottom of page 3) "High level mercury vapor exposures or long-term, low level exposures may result in elevated urine mercury levels which can indicate potential for health effects.
Subtle effects on visual memory, attention, manual coordination, mood, increased levels of fatigue and confusion have occasionally been associated with sustained urine mercury levels above 10 mcg/g creatinine. Increasingly higher urine mercury levels are associated with increasingly frequent and severe nervous system changes in personality, cognition and coordination. Urine mercury levels above 20 to 35 mcg/g creatinine have been associated with increased hand tremor and early signs suggesting potential kidney disease. "
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by TheBrain »

CathyS wrote:I feel a connection to many of you, since I have the exact symptoms that many of you have.
Cathy, thank you for sharing your story with us. You sure have been through a lot, but it's fantastic that you are now in a mold-free environment and feeling better. But as you've described, your journey continues. Good luck safely getting rid of those amalgam fillings!
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!
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Re: Chronic Inflammation as a contributor to Alzheimer’s

Post by CoachDD »

Jumping in to this thread since some of the discussion is around CIRS and Environmental Illness (EI). This is near and dear to me as it has been the major driver in my mysterious symptoms over several years. Thankfully, I am much better today, thanks to the help of FM doctors and a hybrid Shoemaker treatment plan. This journey led me to change my career at mid-life and become a Certified FM Health Coach - with a focus on AD and EI. I am currently leading a small advocacy group of FM Certified HC's to train other coaches on the effects of EI and how best to support our clients. Stay tuned for more information on this. :)

That said, I am knee deep in the research and want to bring to your attention a publication that Shoemaker released within the past month about the urine mycotoxin testing (spoiler alert ~ he does not believe it should be used to test mycotoxins): https://www.survivingmold.com/legal-res ... m-controls

Here is the paper: https://www.survivingmold.com/Publicati ... lished.pdf

And here is the summary from this paper: "Even if we are presented with impeccable lab results from ELISA and thorough use of standard differential diagnosis (we aren’t), based on world-wide control data, and a robust literature on CIRS, there is no basis to ascribe any diagnostic significance to urine mycotoxin testing."

Also, Dr. Datis Kharrazian (a prominent FM practitioner, clinical research scientist and academic professor) had this to say about chelating heavy metals when testing positive for autoimmunity and/or symptoms of compromised brain function: https://drknews.com/chelation-autoimmunity/

Hope this helps!
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Certified Health and Wellness Coach ~ Functional Medicine Coaching Academy
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