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Health Update: Genetics, Neurotoxins, and Mold (Part 3)

9/19/2016

20 Comments

 
Welcome to Part 3. If you are still following along with me, then thank you. If you'd like to get caught up you can read Part 1 and Part 2 first. At this point we knew we were heading in the right direction. It was obvious that my autoimmune system was on overdrive triggering my MCAS, and now the hunt was on to figure out what the culprit could be.

Life works in really unexpected and wonderful ways, and this next part of the story was no exception. Through a friend I had been guided to a M.D who is an Integrative Doctor and also works with Lyme patients. I really felt like it was time for a pair of fresh eyes to take a look at me as a whole. I had been feeling like this for a while, and it's not because my current Doctor isn't incredible (because he is), but because I believe in trusting your gut & my gut said this was right. It was truly serendipitous how I met this Doctor (I'll call her Dr. A), and it was a series of perfect moments that got me there. She shared my same vision and values & I admired her "never say never" mentality. If you ever feel discouraged or healing feels out of reach, she's the kind of person you would want in your corner reminding you that the words "no" and "never" don't exist in her vocabulary. If there is a will there is a way. To top it off her wealth of knowledge is incredible (especially with taking genetics into account).

During my first appointment Dr. A she took a look at my medical files and genetics, took my history, and asked many questions. First things first she got me started on some supplements to help my methylation & cell detox. I have some genetic mutations which make things a bit tougher in terms of detox & getting the right supplements that work with my body. If anyone is familiar with HLA, MTHFR & COMT mutations, they are tricky and tedious formulations to work with. Each of the 3 play off of one another and it's essentially like solving a giant Rubix Cube. In fact I have tried and failed with a few "genetic experts" in finding a good balance for cell detox etc. Dr. A had complete ease decoding it all, and that my friends was a blessing. The other thing she suspected was that I was dealing with a neurotoxin and strongly suspected it to be mold.

Mold... I don't even know where to start on this topic. I have avoided exploring the idea of mold exposure with great resistance because I had a terrible experience with black mold in my work place (circa 2008) that was intense. The fact that I have the HLA mutation means that genetically I can't detox out mold biotoxins the way most people can. These biotoxins stay, they linger, and they mess with the body. The idea of thinking or accepting that my home could have mold, and the thought of what that would mean for me was just too much. My first knee jerk reaction was "No, absolutely not. It's not possible!" But once I took a real assessment of my symptoms and where I was at, my rational side kicked in and I knew I had to at least explore the hypothesis.

So much has changed in the world of biotoxin illness testing in the last 5 years. There are now really accurate markers in blood work that can point toward the presence of biotoxins and mold. It used to be limited to a urine test that detected a few mold mycotoxins, which was often unreliable. But now thanks to the pioneering research of some incredible Doctors they can get very specific. I first had a VCS eye test done, and boy did I fail that. I'm talking, complete big ole capital F. The VCS (Visual Contrast Sensitivity test) is a very specific test for mold, because the toxins they create mess with a specific part of the brain which will make this test impossible to pass. It's a great first line indicator if there is an issue, and I'm not going to lie, it wasn't too reassuring to fail it. Next up was blood work. MSH, C4a, Veg-F, TGF Beta 1, and MMP-9 to name a few. Each of these are specific markers in the blood which will either be suppressed or elevated at the presence of mold biotoxins.

The results started to roll in and one by one each test came back abnormal. Some markers can tell you if it's a chronic (long term or old) exposure, and those came back first. So this told us that yes I am dealing with biotoxins and have been for a long time. However the tests which would tell us if it's a current issue were still pending. These took the longest, and we waited with baited breath. When they came back and my TGF Beta 1 was at 14,000 (the highest range is 2300) my heart sank. I didn't know what to feel, it was such a jumble of emotions. I think it took 2 weeks to really process and accept what the lab work said. I've learned that I can't rush my feelings, and I need to feel the fear, disappointment & uncertainty in order to gather my strength and move into the action stage.

Dr. A said that with my test results being what they were, it's an absolute wonder that I am still functioning as well as I am. Looking solely at the blood work you'd think I was a character on the Walking Dead (ha). Truly, that gave me pause. In that moment I realized how much I under-appreciate my body. I am guilty of feeling like my body fails me, but truthfully it's pushing and fighting through SO much each day, and through this I was reminded of my strength. Every ounce of me is a fighter & as much as I knew that before, I certainly know it now.

Circling back to what I said about God putting people in my life at the right moments, He knew it was the right moment to uncover this missing piece. In all my years on this journey I had never once investigated the possibility of mold exposure or what role biotoxins might play. I say that now was the right time because I finally have this incredibly wise Doctor with a wealth of knowledge on the topic, and from that perspective the timing could not have been better. I mention timing for a second reason as well, because even 3 years ago there was only 1 option for mold. You have to practically tear your house apart to find the source (we have 0 visible mold), and remediation is grueling. You have to evacuate the home for months, they use toxic chemicals & you lose most everything due to mycotoxin exposure. It is an absolute nightmare to even fathom. Dr. A had a mold issue herself recently and recommended an all natural gentle remediation that uses a natural enzyme (not harsh chemicals) to treat the home. They can get into the walls and do not require any demolition (unless you have to do re-piping due to an existing leak etc), it take 4-5 hours to fully treat & you can go back to your house the same day. This will all take place in the coming weeks and I will do a detailed post on how it worked out.

We did ERMI testing & found elevated values of mold on the first 2 floors and very high values in our finished basement. The scale is -10 up to 20. For someone like myself with low MSH levels I need a 0 to -2 range to be able to recover from biotoxin illness. The basement was an 11, and that's incredibly high in the ERMI world. And that's with ZERO visible mold. At this point we don't even know where it's coming from, and until the home inspection it will remain a mystery. Our home is relatively newly built, it hasn't had any major water damage, and it looks pristine. I will say that I have read a plethora of statistics about mold in homes, and many of them echo the same statistic that about 50% of homes in America have enough mold to produce symptoms. If that blows your mind trust me you are not alone.

So, through the many many months we have ended up here with a very clear answer. Although these last 3 posts were way more detailed than my usual update posts there were many reasons for me disclosing so much information. For one, it's important to see just how much time and effort goes into developing a treatment plan and making steps. For us to land on the conclusion of mold illness it took about 5 months total. From all the blood work, the waiting, the tests, more waiting, the Doctor's appointments, and even more waiting, it really adds up. 2016 has fully been spent healing from C. Diff and figuring out this next piece of my puzzle. With a chronic illness people sometimes wonder where all the time goes. It's a totally valid question, and I hope that although this was just a taste, perhaps it could be a useful explanation. I also wanted this 3 part series to encourage those who feel they hit a plateau or don't quite know where to go next. This was my blueprint, and yours may look very different, but never stop looking and searching until you feel well. It might take months, and it might lead you to many dead ends before you hit the finish line, but ultimately it is all worth it.

The plan going forward is to first remediate the home, and then get started on a comprehensive mold and biotoxin rehabilitation. I will talk more about this as they occur and I can share details. Thank you for following along on my health update, and it is my hope that in the coming months and year I will have more uplifting health updates making great strides.

xoxo,

Christina
20 Comments
Renee Turula
9/20/2016 12:39:39 pm

Christine, thanks for the info on your mold status. Mold and toxins are everywhere. If you are dealing with a mold issue as most of us early ( Bird in the Cage) immune depleted individuals are. Then, I would say look at your humidity in your environment and in your home. If you are over 50 % in or out of your home you need to either move to a dryer climate or get a dehumidifier under your home to dry out the spores and dampness.

Reply
Christina
9/20/2016 02:30:53 pm

Hi Renee! We actually do have quite a few de-humidifiers around the home. Both in the basement & also built into the A/C system in the home. The air is usually around 45% or so (sometimes lower). It's quite baffling! Of course I've also read that mold can be just as prevalent in dry climate, just different kinds of mold species thrive from the dry air. So I'm not sure if that's the case we have here or not? I will know more in the coming weeks and things get investigated! But I'm hopeful! Thank you for your feedback, I really appreciate learning from those who have knowledge and have dealt with it before.
Wishing you well,

Christina

Reply
Becca link
9/23/2016 01:53:25 pm

In the almighty, all-powerful name of Jesus Christ the Ultimate Physician. I claim this as the final MAJOR piece of your puzzle–and however long it takes for remediationa and treatment, I am claiming daily that this is going to be THE biggest turning point that will eventually get your health to a place where it's only onwards and upwards in a good way! Obviously I'm realistic, I know it's not an instant fix and you still have steps to take, just wanted you to know it's being claimed, 15 mins down the road, in Jesus' name, that THIS will be such a huge turning point for you, especially knowing the absence of other infectious markers and improved CD57. I know we've discussed this, but I had to share it here, too, because I'm not going to stop claiming it, sister–however long (or short, if He allows) a time it may take to finish it all. ❤️

Reply
Carrie
9/23/2016 10:52:15 pm

Thank you for sharing your story! I started with mold. We remediated and I followed the Shoemaker Protocol. As my mold markers started going into range, my C3a started going up. I was tested for lyme, but my LabCorp Western Blot came back negative. Fast forward 7 months, I felt a little better, but I noticed my illness was cyclical. My new immunologist then did the same Western Blot, and it lit up like a Christmas tree! I've been treating for lyme and coinfections for about 2 months now. I love too all the info you have on your blog about the DesBio homeopathics. I've been taking those for a little under a month. I'm kinda glad I started with mold, because that was more difficult with the house remediation than just treating yourself. Keep at it! It will be worth it. Blessings!!

Reply
Christina
10/7/2016 03:04:12 am

Carrie,
Thank you so much for sharing your story! I completely agree, had I know I had mold I so wished I would have started with that & taken the burden off of my body to heal the Lyme & co's. I'm so glad you got an answer by getting the test done when it cycled through. It's so interesting how this disease works! The DesBio series are incredible, I wish you great success with it! :)

Reply
Lisa
10/2/2016 12:44:28 am

So thankful to have found your blog/website as we have similarities. Thank you for sharing so much of your personal story. It really is helpful. I will be following!

Reply
Christina
10/7/2016 03:01:45 am

Lisa, I appreciate your encouragement so much! Thank you for following along :)

Reply
KundaliniHero
11/3/2016 11:54:23 pm

From what my doctor has told me - mold and heavy metals are the major issues, once you successfully treat those two harrowing problems the body is able to keep Lyme in check. Part of this is living in a mold free environment which turns out to be one of the most singularly difficult feats to pull off due to the fact mold is utterly invisible and expensive to detect. What also makes this difficult is mold is said to cross contaminate certain objects and belongings making a clean environment unclean and there have been many instances of remediated environments still being unsuitable due to dead spores which still release mycotoxins. If none of what I have said above has driven you insane I urge you to check out the website paradigm change for more info on mold and exactly what your up against.

Reply
Issie
1/3/2017 10:26:00 am

If mold is a problem, sadly, much if what you own may have to be discarded. When we are in a toxic state of mold exposure, we know we are sick. Yet, we don't realize how small a thing can continue to make us sick. It takes major cleaning to be able to keep anything. Sunning pictures, wiping down with clorox, sunning some more. And still they may have to go. I found repeated washing with baking soda, borax and vinager to help textiles. But anything old and musty has to go or be sealed into something very tight and not bothered by you.

Go as chemical free and organic as possible. As your body cleanses you may get more sensitive. That's a good thing. It's things you should have already been able to notice....now you do.

Unburden the body. Support the immune system and keep inflammation down. Work on detox and support gut ecology.

Issie

Reply
Brian
9/23/2017 01:39:38 pm

I'd be interested to hear your experiences with Green Home Solutions. I'm on a CIRS Facebook group and their treatment has gotten some positive reviews but seems to be controversial.

Reply
Christina
9/30/2017 03:12:36 am

Hi Brian! If you can send me a quick email so we can chat there I'd love to tell you more in depth about my experience. And I'd also love to hear what you've read about it in your group about it being controversial. Because I asked the company a TON of questions prior to treatment and after, even speaking to the owner/creator of the company. So I might be able to answer or confirm/deny some specific questions or concerns too.
My email is cskova01@ladyoflyme.com

Reply
Issie
9/30/2017 01:38:04 pm

Christina, who is Dr A? My doc Dr Jennifer Smith -Scottsdale, AZ is a certified Shoemaker doc. We are making headway. But it's a slow go. I have so many autoimmune things popping up.

I have the big whammy genetics and all my markers are off. Neuro Quant showed brain swelling and compression due to it.

How'd your remediation go?
Issie

Reply
Christina
10/2/2017 08:32:16 am

Hi Issie!
My doctor has asked that I don't put her name on my blog, but if you email me privately I'd be happy to share!
I'm glad you have a good Doc you're working with and I agree that it's such a slow process. I too have had issues with autoimmune come to the surface so it's a tricky process!
The remediation went well I believe, I haven't been able to get a follow up ERMI due to financial costs and having other things pop up in the mean time. But the visible mold I had did disappear so that's a good sign to me about it indeed working as promised.

Reply
Issie
10/1/2017 04:47:30 am

There's quite a few stories of people's journeys with mold on Health Rising forum and blog. Some good info there.

Issie

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Andrea
10/2/2017 12:17:22 am

Checking to see how your remediation went with green home solutions ? I too test positive for CIRS and my ERMI test was a 4 but still cannot recover at a 4 was thinking of using GHS but hear mixed reviews though most are good . The treatment they do is also suppose to remove mycotoxins .

Reply
Christina
10/2/2017 08:43:30 am

Hi there! Yes the enzyme treatment they use does also deactivate and eat up the mycotoxins along with the mold. That was a big reason I chose them, because mycotoxins are notoriously difficult to get rid of and I didn't want to throw all my belongings away. I had a good experience overall, I had some visible mold around a couple air vents in my home and that disappeared. So it definitely does get rid of the mold from what I've seen. I didn't have a follow up ERMI yet because I had other health complications pop up and financially I have not been able to run the needed blood test in conjunction with the ERMI yet, I hope to do that soon, and afterwards I plan to write a whole blog post which goes more in depth. But in terms of it actually working to kill the mold, I did see it visually get rid of it.

Reply
O2 Mold Testing Reston link
11/7/2020 11:07:10 am

A mold is a form of fungus which can slowly become hazardous for you and your family members if you do not remove it timely. It can also create the problem for your lungs in the future and can also cause cancer.

Reply
O2 Mold Testing Gaithersburg link
11/13/2020 02:06:57 am

The process of removing the colonies and making sure that the level of mold presence in your abode is withing the natural limit is known as mold removal and remediation.

Reply
Mold Remediation Montgomery Village link
12/9/2020 01:09:47 pm

You should hire professional cleaning services for the complete removal of the mold and better cleaning of your home.

Reply
Kate
7/23/2021 07:24:29 pm

I know this is an old post but I couldn’t find any follow-up post and I was wondering…did you ever did a repeat ERMI test to verify whether or not Green Home Solutions was effective?

Reply



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