August 10, 2016
By Rachel Leland
This is the story of Rachel, a 24-year-old who has been sick with chronic Lyme disease and a variety of very debilitating symptoms since age 13. Here she tells her story of the dramatic improvements she recently made as a result of addressing toxic mold issues. Her blog is called Resiliently Rachel.
When I was 13, all of a sudden, everything in my body hurt—intensely, and all the time—and I could not walk because of the pain. No medication helped at all and I needed a wheelchair to get around.
I also had other strange symptoms, including numbness in my fingers, difficulty breathing if I sat up straight or lay down flat, as well as trouble reading and remembering things.
None of the doctors my parents took me to could figure out what was happening to me.
Rachel at age 13.
Lyme & Chiropractor Treatment
After almost a year, we finally saw a doctor who recognized that I had Lyme disease, bartonella, and babesia, and I started treatment. I did antibiotics, hyperbaric oxygen therapy, herbals, and acupuncture.
These treatments helped some of my symptoms, but nothing touched the pain that was constantly stabbing my legs, back, and neck.
Then a friend with Lyme suggested I see a chiropractor who specializes in what’s called Applied Upper Cervical Biomechanics. This specific technique works with the top vertebrae, which strongly affect the central nervous system and brainstem. Making sure the neck vertebrae are properly aligned can have profound effects on the body.
The fact that it helped my friend was reason enough for me to try it out. After the very first appointment, the pain in my neck stopped—for about an hour. But then it came back, worse than before.
We went to three appointments a week, and except for that very first time, my pain remained the same.
Then there were small shifts. I found I could move around in a swimming pool, supported by noodles and other floaties.
Eventually, I found I could sit up straight without it hurting my breathing.
Then, one day, while driving home after my 14th treatment, I felt the pain all throughout my body just melt away. Later, my chiropractor would describe it as the pain switch turning off—a direct result, he believed, of working with the nervous system through the upper cervical spine.
After that, we were believers in chiropractic work!
I continued to go three times a week, and I consistently found that when my neck was out of alignment, my Lyme symptoms worsened.
The more chiropractic treatments I had, the more I improved, and at that moment we thought life was going to keep getting better and better. But instead, it just plateaued.
I was able to walk pain-free, which was huge, but I seemed unable to gain physical strength.
No matter how hard I tried, I couldn’t stand for more than 5-10 minutes at a time without my legs starting to fall out from under me.
Same with walking. I could go from point A to point B, but that was it.
Although I looked great on the outside, I was completely dependent on antibiotics.
If I went 24-48 hours without my dose of Azithromycin, I would be unable to stand or walk. I would lose complete control of my legs.
Video: Rachel shares the story of August 8, 2008 – the day when she became able to leave her wheelchair behind.
As amazing as the chiropractic treatment had been for getting me out of the wheelchair, at this point it seemed only to stop me from getting worse…not to help me continue to get better.
For four years I was stuck in this limbo, and we just grew to accept it.
Finally it was time for me to move to Portland, Oregon, where I was going to college.
I was so excited to start my life, away from home, away from people who knew me as the girl who used to be in the wheelchair. I could start new.
But soon after I moved away, my health began a steady decline. Weird symptoms popped up that my Lyme doc couldn’t explain.
If I exerted myself at all, my legs would go limp, my heart would start pounding and my arms would go weak. Even if it was as simple as walking a little faster across the street so as not to get hit by a car. Once I got to the other side I needed to stop right where I was to let my body catch up, or else I would end up on the ground.
Same for my arms. It wasn’t that they were weak, per se. (I could even win an arm wresting match!) But then moments after that I would be unable to lift my arm up to scratch my face. Or grip a pencil.
No one could tell me why this was happening or how to fix it.
We had blamed these new symptoms on Lyme for too long, and my parents and I finally felt that it had to be something else.
I went to see top specialists in cardiology, neurology, and hematology. Everyone said I seemed to have a “unique case” and they didn’t know what was wrong with me.
We were desperate.
We even posted my story on CrowdMed to see if there was anyone out there who could explain my symptoms.
A video summarizing Rachel’s early illness and Lyme treatment experiences.
Then a friend of a friend advised me to see a mold specialist. We made an appointment with Dr. Raj Patel, in Redwood City, California, as soon as possible.
And finally, just like back when I was 13 and got my Lyme diagnosis, we breathed a sigh of relief. Sitting in front of me was a man who not only knew what was wrong with me, but didn’t think I was unique at all!
I had classic symptoms of toxic mold exposure.
And thus started the next phase of my life: mold treatment.
Now, coming from a Lyme background…I was quite familiar with taking pills and having my health be a full time job.
But whoa…was I in for a shock when I learned how completely insane my mold treatment was going to be.
Dr. Patel follows the Shoemaker Protocol, and I was taking meds nearly every 15 minutes.
Binders like cholestyramine and charcoal controlled my life. Everything revolved around when I needed to take those. The meds determined when I could eat, when I could take my other meds.
I was on antifungal and antibacterial supplements. Glutathione IVs.
You name it—I was doing it.
Rachel received IV therapy while being treated for mold issues.
At this point, I had been accepted to grad school at the same college I had just recently graduated from. I had it in my head that I would continue my life as normal and just do the mold treatment on the side.
Dr. Patel had me do the HERTSMI-2 test through Mycometrics on the main building I would be spending time in. Sure enough, the results came back as having black mold.
He advised me to drop out before the program even started.
I remember feeling so annoyed that he would even suggest that. Who drops out of grad school because of a little mold? I had worked so hard…I would just have to work harder!
So no, I did not drop out of grad school before it started…
I dropped out four weeks into the program after being overcome by incredibly debilitating symptoms.
My face was on fire. My cheeks burning red—all I could do was hold an ice pack over my face for hours at a time until the stinging lessened.
The bones in my hands and feet felt like they had all been ripped out and put back in the wrong place. I was so weak I could barely hobble around my apartment.
I couldn’t eat anything. I couldn’t think—the brain fog was so intense.
How was this happening? How had everything gone horribly wrong in just four weeks?
So there I was, back in Dr. Patel’s office, listening to him talk about how important it was to limit all exposure to mold while on treatment.
I wish I could say that this is when it hit home…that after realizing that he was right and I was wrong, that maybe I should just listen to him in the future.
But no…sadly, that wasn’t the case.
While undergoing mold treatment, Rachel started Select Stuffies, a line of crocheted animals with disabilities and differences.
Finally, six months later, I hit rock bottom.
I couldn’t function on even the most basic levels. I was too weak to brush my hair. Too fatigued to get out of bed or even sit at the couch.
I was finally ready to surrender and do whatever I had to do to feel better.
Which leads us into the next phase of my life: actually following my mold protocol to the letter.
This time Dr. Patel laid down the law. For at least the next six to nine months I could not step foot inside a building that hadn’t been cleared for mold.
That meant no grocery stores. No movie theaters. No restaurants. Nothing.
If I absolutely had to go inside a building, I wore a charcoal face mask and brought my travel air filter.
For the first few months of treatment, I just got worse and worse. I spent all day lying in my bedroom in the dark, listening to audio books and barely being aware of the hours passing by.
But with time, the fog lifted, and I got more and more strength back. The first being arm strength. For so long I had been too weak to lift my arms up, but all of a sudden, after starting meds to help my adrenals, I was able to move my arms as much as I wanted!
Right away I put them to good use and taught myself how to crochet from videos on YouTube. After that, I was constantly crocheting, and even opened up an Etsy page.
After months of feeling like I wasn’t contributing to the world, crocheting gave me a sense of purpose.
Then came my leg strength. Then core.
I could do yoga! For the first time in my life (post wheelchair), I was strong enough to exercise!
Rachel on how a year of intensive mold treatment allowed her to engage in life again (including to start running).
Eventually, after thirteen months of no buildings, Dr. Patel gave me the go-ahead.
I could now buy my own groceries! I could talk to random people I didn’t know in the grocery store, who had no idea that I had been cooped up inside my apartment for the past year!
It was the most wonderful feeling. For the first time in over a decade, I was thriving.
At 24, I was off all antibiotics for the first time since I was 13.
I could run. I could dance around my apartment.
By treating the mold and Lyme together, I was able to eradicate all my Lyme symptoms.
I now realize that the plateau I hit back when I first got out of the wheelchair wasn’t just a “plateau”…it was mold.
Mold prevented my Lyme treatment from going any further, and it wasn’t until we treated it under the supervision of a mold specialist that I truly experienced good health again.
After going through this past year with such intense mold treatment, I now understand that it is vital to avoid mold.
I can’t live in mold. Or work in mold. And that’s going to be a forever thing.
And sitting here, feeling fantastic as I write this, with no pain, no weakness, and no brain fog…
I can tell you that I’m okay with that.
I’m always going to have to be mindful of where I’m spending my time, but honestly, that’s such a small price to pay in the grand scheme of things.
I have my life back, and I’ll keep doing whatever I have to do to keep it that way.
Rachel blogs about her mold and Lyme experiences at ResilientlyRachel.com.
She recently moved from the San Francisco Bay Area in California to Phoenix, Arizona.
When Your Child Has Lyme Disease: A Parent’s Survival Guide is a book written by Rachel’s mother about the family’s experiences with Rachel’s illness. It is available in Amazon Kindle and paperback versions.
Rachel’s line of crocheted stuffed animals with disabilities and differences is called Select Stuffies and sold through her Etsy shop.
Updates on new stuffed animals available are posted on the Select Stuffies page on Facebook.
About Living Clean
Living Clean in a Dirty World is a community blog project about recovering from mold-related illness, curated by Paradigm Change.
The goal of this blog is to provide a forum for people who are working to improve their health through clean living and related techniques to share their ideas, experiences and success stories.
Please consider sharing your experiences with mold avoidance or the locations effect, your knowledge about therapies that may be useful to others, your instructions for preparing healthful food, or your recovery story as a post for the blog.
Those interested may write to info at paradigmchange.me to propose a topic.
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Those interested in the role of toxic mold in chronic Lyme disease also may want to like Scott Forsgren’s Better Health Guy page on Facebook.
About Paradigm Change
The Paradigm Change website provides a wide variety of information on the role of mold toxins in chronic illness.
Please check out the newly updated Beginner’s Guide to Toxic Mold page on the site! It lists many terrific articles and videos on toxic mold issues from many different sources.
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