Doctors Disagree About Mold Issue

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Issie
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Re: Doctors Disagree About Mold Issue

Postby Issie » Wed Sep 26, 2018 12:53 am

Julie G wrote:FWIW, Chris Masterjohn shares his story of mold toxicity here.
I have had mold issues and under treatment with a Shoemaker trained doc. Having had 2 Neuro Quant and definite signs of brain atrophy the question is did CIRS or Lyme cause these issues. We just about have the mold and Lyme at bay. But I still have MARCONS. Dr. Shoemaker is finding that MARCONS can also cause brain atrophy. We are addressing this more and see where it goes.

Waves, Issie! It's nice to see an old friend :D I'm with you on several counts.

I'm curious if you've had your APOE status checked.


Hey Julie!
Sorry to hear you have had Lyme and now CIRS with MARCONS. It's a long road to recovery with us complex ones. Hope your MCAS is better. There is a new book out that my doc says is the "Mold Bible" called A Recovery Manual - Mold Illness Surviving and Thriving. If this is all new to you - this book gives step by step testing, what to do, how to remediate, how to clean. Steps and order to go in for recovery. You still will need to research if you want deeper science. But it gives you the basics.

As for my APOE - mine was a No Call on my 23&me. But my sister and her son were positive. Not sure which part of it. My mom died from dementia. But she also had MCAS, CIRS and MARCONS. I have the worst of the worst genetics for CIRS. I can't throw off mold or biotoxins. Came up positive on everything and every marker was off. We haven't rechecked recently. But Mayo did some of them a few months ago and some things were better. At least my Complement factors are better.

I do feel better all around. Going after Lyme and Mold has been a turning point for me. Hope it will be for others just starting this journey.

Issie

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Re: Doctors Disagree About Mold Issue

Postby CoachDD » Sat Sep 29, 2018 5:06 pm

DLP - I appreciate your question so I'm jumping in on this topic as it became apparent that this is the crux of my issues and I've learned a LOT in the process. When I began my journey (after finding out I am 3/4), I honestly thought I had early onset AD. I had so many cognitive issues, I became disabled and eventually had to leave my 28 year career - most recently as an executive in the Healthcare Industry. At its worst, I was unable to sleep more than 2 hours a night and had difficulty doing simple tasks. I wasn't living at all, I was dying - and I knew I had to act fast. I was 50 years old. . .and I was scared to death.

I've researched this extensively and found there is very little support or credible information outside of what Dr. Shoemaker and now http://www.ISEAI.org has put out there. Be aware Dr. Shoemaker (who is considered THE expert who brought forth much needed attention and treatment for many) is no longer in practice, which may be why many docs are not supporting his research and treatment. I believe he still does consultations and continues to mentor/train doctors on the "Shoemaker Protocol" and I truly believe he has helped many. . .however - he was reprimanded by the MD State Board in 2013 - you can read the details here: https://lymescience.org/rogues/Ritchie- ... plined.pdf

It is because I followed the Bredesen Protocol "Cognoscopy", which includes many of the recommended Shoemaker Protocol tests to identify Type 3/toxins, I was able to identify my core issue - mold toxicity. Chronic Lyme, MARCoNS and EBV are also present.

I had a MRI w/NeuroQuant (as well as a PET scan - which came back normal) and discovered more than I bargained for - although, the radiologist who read my MRI reported this: 1.) "Unremarkable MRI scan, without evidence of acute infarct or bleed" and 2.) Baseline volumetric measurements do not support a diagnosis of primary messiah temporal lobe based neurodegenerative change." The detailed NeuroQuant Triage Atrophy Report drove me to dig deep into this - I had 11 areas of atrophy (highlighted in RED). There are very few doctors who can read/understand this report, so I consulted with Dr. Mary Ackerley (who has worked alongside Dr. Bredesen and is the VP of the newly formed ISEAI.org). I am in the process of transcribing her comments (she freely allows you to record the call) and will share some of these details soon. Mold and Lyme were indicated in my results.

There are PLENTY of conventional medical doctors who do not believe mold toxicity or biotoxin illness exists (as well as Chronic Lyme, but that's another story for another day). Those who were willing to have a discussion on this said the only thing they learn in medical school is that symptoms related to mold exposure are from allergies - see "Mold Toxicity Fact Sheet" for a sample language and research offered to the conventional medically trained docs. Many FM docs (NPs, Alternative/Holistic too) believe mold illness is real and it seems there is a real uptick in their education on this.

Mold Illness is real - I am living proof and now being treated for it. Thankfully, my symptoms have improved about 80%, which is huge!! Sadly, my 17 year old daughter also tested positive, so we are currently treating her as well. We are in the process of determining what to do with testing our home and if necessary, what the next steps are for remediation.

Now for the difficult part. . .Dr. Ackerley was brutally honest with me about remediation (which I appreciate). She shared that it is tremendously difficult and expensive to do - and there is NO guarantee you will eradicate it. She said by working now with thousands of patients, she has come to realize it may be best for many to just MOVE. I also listened to a podcast from a mother of 4 who spent a significant amount of money to remediate and she now suggests to anyone dealing with this to simply sell your home "as is". There are many who do not react to mold - the more challenging issue is to find somewhere that does not have mold or other mycotoxins.

I highly recommend anyone concerned about mold to research further and seek out treatment from the providers listed on ISEAI.org. Dr. Jill Carnahan is a FM doc (who is also on the board) also has personal experience - she has put out many YouTube videos and podcasts on this subject, so check those out.

Tincup also mentioned BulletProof and Dave Asprey - he also put out a movie that everyone should watch called Moldy - here's a link to watch for free: https://moldymovie.com/index

Hope this helps - I'd be happy to share additional research/articles or talk to anyone dealing with this issue, so please feel free to PM me directly. Best of luck on your journey!
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Re: Doctors Disagree About Mold Issue

Postby Julie G » Sat Sep 29, 2018 5:36 pm

Very informative, CoachDD. I'm curious if you have the "dreaded" HLA-DR/DQ haplotype that indicates you can't detoxify mold? I'm so happy you're feeling better Thanks for sharing.

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Re: Doctors Disagree About Mold Issue

Postby CoachDD » Sun Sep 30, 2018 7:32 am

Julie G wrote:Very informative, CoachDD. I'm curious if you have the "dreaded" HLA-DR/DQ haplotype that indicates you can't detoxify mold? I'm so happy you're feeling better Thanks for sharing.
Hi Julie!

I don't have the "dreaded" multi-sensitivity HLA-DR/DQ (which makes it very difficult to heal once your toxic bucket spills over) but I do have the two that point to mold susceptibility (7-2-53 and 13-6-52A). And yes, my daughter does too. :(

I am including a few more attachments that may be of help - I wasn't able to attach them all to my last post due to size.
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Re: Doctors Disagree About Mold Issue

Postby DLP » Tue Oct 16, 2018 5:54 pm

I just got back after being away for a couple of weeks; I wanted to belatedly thank everyone who responded to my questions. Your insights are really helpful! It is wonderful to be part of such an active and caring community.

DLP


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