If you have any chronic illness you MUST make sure you are not living in a house with mold. If you worked or went to school in a water damaged building then you need to consider seeing a mold specialist. You are the best judge of what is going on in your body. Go with your gut! If you are told it’s all in your head or you need psychiatric help because nothing is wrong with you move on from those doctors. Your symptoms are real and you can heal!
25%+ of people have the mold illness gene. This mean that more than 25% of people have the HLA gene and cannot remove mold toxins from their body. That’s way over 100 million people in North America alone.
♥Here is my story♥
[See below for more info on CIRS, Shoemaker protocol and my steps to healing]
Get your house tested
I knew my house was making me sick even though my mold cloth test score came back low. Here is what I recommend.
- Go by how you feel: Leave your house for a week and stay somewhere you know there is not mold. Try going to a dry desert climate. Track in a journal how you feel before and when you are away and when you get home.
- Do moisture reading on your walls in your house and get a mold mitigation company to open up any damp walls.
Here is what happened in our house:
When I was first diagnosed with Lyme Disease I was told by a friend that I will never get better if I’m living in a house with mold. At the time I did not know the different testing methods so I called a company to come to my house for air testing and eventually learned I needed more sensitive testing called HERTSMI.
February, 2016 I did air testing for mold in my house and the report said that we did not have any black/toxic mold in the air but that we had damp walls in the master bathroom. I wasn’t surprised by the damp walls because we have had problems in that bathroom since we moved in.
I spend $800 air testing every room in my house.
They said I did not have toxic mold. UGH! WRONG!
The Lyme Literate Nurse Practitioner told me that the air testing for mold isn’t sensitive enough and I needed to do the ERMI testing. WTH? Really?
I was so sick and overwhelmed with everything I was supposed to take that I ignored her recommendation about additional mold testing. When your sick 24/7 it’s a HUGE accomplishment just to make it out of bed during the day. So adding one more thing on my “To Do” list just didn’t happen.
In June 2016, I went to Wisconsin to my nieces wedding. I almost didn’t get on the plane because I was so sick. In fact, I was so sick on my flight from San Francisco to Chicago I asked for a ride to my connecting gate. Chicago O’Hare airport is ginormous and I knew I couldn’t walk that far at that point. I got to ride on a big cart with 5 other people.
I’m so glad I made the trip to Wisconsin. It was a beautiful resort with a great spa and it was the first time I knew for sure my house was making me sick. Certain symptoms disappeared when I was away from my house. When I got home certain symptoms came back so I decided to test the “my house is making me sick” theory again.
So in July 2016, I decided to go stay in a dry hot desert of Palm Springs. The temperature ranged from 101F (38.33C) to 117 (47.22) and I LOVED it! I know what you are thinking. You think I’m crazy and that you would never want to go there when the temperature is that high. But NO HUMIDITY makes a HUGE difference.
September 2016, I was living in a hotel to get away from the mold and my husband did the ERMI testing on our house. This is the company that I used. My Cometrics. Here is a link to #KarlaFightsLyme blogger that did a good summary of the testing she did.
My HERTSMI result came out low (8) however we knew had damp walls from moisture testing we did earlier this year. My Lyme/Mold doctor was not convinced it was mold since the score was so low but we had already started the work to inspect behind the walls. And, when the walls were opened there was mold so we had to have the mitigation company get rid of it and our bathroom gutted. I have a nice new bathroom now.
December 2016: The LLMD/Mold doctor I was seeing was horrible. I won’t name names but he’s near San Francisco and very well known. I did not know he stopped following the Shoemaker protocol and does his own method. He did not do all the right blood tests confirming CIRS but said I had the mold gene. See labs here. He was very disrespectful and thought it was funny when both couples have lyme and can’t focus. WOW! I highly recommend you make sure you see someone that follows the Shoemaker protocol. See the website here.
March and October 2017: I focused on treating my lyme, babesia and bartonella. I did two trips to Germany for hyperthermia and IV Ozone with my naturopath. I was 75% better and still struggling. My primary doctor suggested we find a new mold doctor and follow the Shoemaker all the way through. Thank you Dr. H for getting us back on track.
November 2017: I finally found a new doctor that follows the Shoemaker protocol. I have to fly out of town to see him but he has confirmed by all blood tests that YES I have CIRS. I also found out I have MARCoNS, Multiple Antibiotic Resistant Coagulase Negative Staphylococci which is common with mold or biotoxin illnesses. Had the first mold doctor done his job I would have been much further along. Sadly, I live very close to the bad doctor. Oh well, in 23 years I can only name 3 good doctors.
Chronic Inflammatory Response Syndrome
CIRS stands for Chronic Inflammatory Response Syndrome. In very basic terms when a person is exposed to a biotoxin like mold the immune system in the body responds and the biotoxin is eliminated. But if you are someone with the mold gene (HLA-DR) your body does not have the ability to eliminate the biotoxin so it remains in the body. It can effect hormones and create a variety of symptoms and a person can develop MARCoNS, Multiple Antibiotic Resistant Coagulase Negative Staphylococci. Please click on the Shoemaker Chart at the bottom called The Biotoxin Pathway.
I’m explaining this very basically so please click the links below to read more. So if you have symptoms that never go away, are given a diagnosis that you don’t agree with, told it’s “all in your head” or have been exposed to a home or building with water damage you should consider CIRS. Most doctors are not educated in CIRS and may not believe you but go wit your gut. If you feel something is wrong find a new doctor. You can find a Shoemaker certified doctor here. What is CIRS: Per Surviving Mold Dr. Shoemaker Protocol Website
November 2017: I starting following the Shoemaker Protocol with a certified MD. This is the order of what I am doing. I will update as I get to each step. Initial Blood Tests: MMP-9, DHEA-Sulfate, ACTH-Plasma, ADH, Cortisol, MSH (Hormone), Osomolality, Triodothyroine, Testosterone and VEGF-Plasma.
Step 1: Remove yourself from the exposure to mold. It could be your home, work or school. Hire a mold remediation company to get the mold taken care of properly. I do not recommend doing it yourself. See these reasons here. Mine was only behind the master bathroom as mentioned above and the mitigation work was done October 2016. Some people have to abandon their home and leave everything. I was told to wash all my clothes in borax.
The metal taste in my mouth disappeared immediately after the mold was gone but my first LLMD/Mold doctor did not think it was mold even though he said I have the mold gene. I continued on my lyme treatments with other doctors but I was not completely healing. So decided to pursue the mold route again. Even though I knew I had the mold gene I had no clue as to what it meant. Thankfully, I found a new doctor that I like that is Shoemaker Certified. You can find a Shoemaker certified doctor here.
At the first appointment my doctor had me do the VCS – Visual Contrast Sensitivity APTitude Test. VCS is used to monitor your progress and my doctor does it at each appointment. He also tested me for MARCoNS by taking a Nasal Swab. He also had a very detailed symptom checklist he went through with me.
Step 2: Eliminate the Toxins While I was waiting on the results of the blood test I started the binder Cholestyramine (CSM). A binder is something you take to help”bind” substances to get them out of your body. CSM is specific for mold toxins. I remember starting this October 2016 but by first “mold specialist” decided I did not have a mold illness he had me stop. WOW! WRONG! But I am so familiar with bad doctors.
Start CSM slow. My doctor wants me to build up to 4 times a day. I started with one and was at 3 after one month. Slower is better. I take magnesium citrate and/or fiber to keep bowels moving since it can make you constipated. I also do regular coffee enemas as my detox protocol so I’m good. I do notice that sometimes I get weird vision for a short period after I take it but then it goes away. Apparently, that’s ok per my doctor.
I got the intensification effect after 5 weeks of CSM and had to stop. Then I took fish oils to being down the inflammation and tried again. No luck. I could not tolerate CSM so I tried Welchol. I didn’t do well on that either so I stopped.
Step 3: Treat MARCoNS: Multiple Antibiotic Resistant Coagulase Negative Staphylococci. I tested positive for this Staph infection by using a nasal swab test. I treated with one bottle of Silver and EDTA but have not been retested.
Progene Genetic Testing: I spent $2,000 to do the genetic test, Progene. It took 6 months to get the results and as of 1/1/19 I have not had those interpreted and have done no further treatments for CIRS. I have an appointment with my Shoemaker Doctor on 1/3/19 so hopefully I’ll understand why I spent this much money on this. At this point I feel it was a waste of money. I started doing DNRS during the 6 months it took to get the results and at this point I’m not sure I need more treatments for mold.
DNRS. Since beginning DNRS I have been able to go to my second home which has higher levels of mold that my main home. I am no longer debilitated with a migraine or anger and rage when I go there. In the past, I’d be debilitated within 24 hours of being there.
The DNRS is definitely working but until my brain in completely rewired I’m doing my own ozone treatments at home. The few things I am dealing with right now are continual bladder infections, frequent urination causing insomnia and anxiety. I can not handle antibiotics so hopefully my home ozone treatments and the DNRS will heal all of this. It’s definitely better.
Symptoms of Black Toxic Mold