May 2019 — It’s Lyme Disease Awareness Month — three years ago I didn’t even know there was such a thing and now it’s a month I take to up my game in spreading awareness about the disease, how to get proper testing done and share my story about treatment — the good, the bad and the ugly. Sadly there’s more ugly than good but it is what it is.
After being in remission since last summer after a successful several weeks of stem cell and other supportive treatment at Stemaid in Mexico, I started feeling pretty bad again almost 2 months ago. The reality is that when people feel better they get back to living and in my case stopped blogging. I’ve been super crazy busy at work, taking on more skin care clients as my reputation as the best esthetician in Los Angeles grows and launching my skin care officially at a trade show called Live Love Spa. During this time all my crushing fatigue came back — believe it or not worse than ever.
I’ve been seeing a wonderful integrative doctor in Studio City to help me understand my genetics as this was the missing piece I felt. I had done 23&Me a few years ago and already knew that I had both MTHFR markers meaning I don’t methylate — that’s the simple explanation as I still don’t fully understand it myself. But I take a different form of Vitamin B that my cells will absorb and a separate methylation supplement to help even more. In the meantime this same doctor ran a bunch of bloodwork which showed that my inflammatory markers are still off the charts — it didn’t make any sense as at the time I was feeling okay although the fatigue was slowly creeping back. She said to me that I’m definitely being exposed to something toxic and recommended I take a test by Great Plains Labs to test for mycotoxins. Mycotoxins generally come from mold.
Lots of Lymies deal with mold but it was the one thing I thought I had escaped and I was so happy about it because reading others’ stories I could tell that living with mold poisoning is as bad if not worse than Lyme — it can be treated but it’s expensive (testing and finding out the source and then fixing the problem and remediating) and takes a good six months being out of mold after remediation (if one can afford) to get relief. To make a long story short my mycotoxin test came back with incredibly high levels of two toxins released by mold — one comes from creepy deadly black mold — ugh.
We had our house tested a couple weeks ago and found only one spot under the kitchen sink. We had the leaky pipe fixed right away and we’re doing remediation to the tune of at least $1500 if not more on Wednesday morning. On Thursday I’m having my office inspected and my gut says this is where the problem is. I remember several years ago an office above mine had a pipe leak or burst and water was dripping out of my bathroom ceiling. The building fixed the problem and patched up my ceiling and painted it but they didn’t let it dry out before sealing it up — grrrrrr… When I looked up at the bathroom ceiling a couple days ago it was a big reminder of the leak as there are bubbles all over the paint covering the ceiling. If the inspection shows mold it means I’ve been exposed to it 5 to 6 days a week for at least four or five years and apparently my body has had enough and again my immune system crashed.
To make matters worse, in addition to living with the worst fatigue of my life and the worst brain fog (I can literally feel my brain swelling and can’t remember squat and can’t find words when I’m talking or writing so forgive any typos or grammar hiccups) I found out a week and a half ago that I’m out of remission — yep all my infections are back most likely triggered by the mold poisoning. The one thing I thought I had successfully avoided…so here I am.
For anyone that knows me — I’m a person who has lived my life taking care of others. I’m an esthetician by trade — in college I minored in psychology so a lot of peer counseling happens during the facials I give my clients. I’m like a bartender in that sense but people confide in me when I’m working on them. When I learned I had a disease most people don’t understand and even more haven’t even heard of it and most doctors don’t believe in, I made it my mission to help others. My husband and I have been paying for all my treatment ourselves — I’ve never quit working — work has kept my brain alive and my mind off my disease for a good 8 to 10 hours every day.
I’ve never been one to ask for help — it’s always been my downfall — too much pride and thinking I can handle it all myself. But truth be told friends, I’m f’ing exhausted and I can’t do it all myself anymore and I’ve done the unthinkable in Wendei’s world, I’ve started asking for help. One amazing friend who recently lost her husband cooked three meals for me last week — she just showed up at my office and asked for my house key and went to my home and cooked. Another two friends are working on a GoFundMe account for me and Kris to raise money for treatment — did I mention that my husband was also diagnosed with Lyme and Bartonella among other things? So we’re both treating hard core, paying a fortune for remediation and my hunch is we’re going to have to retain a lawyer this week to sue my landlord to get him to remediate the mold in my office.
It’s become clear that every day I go to work I’m getting sicker so I need to get creative and think about a way I can work from home while I battle it out with my landlord and his partners.
My heart is broken that I can’t drive long distances so I’m barely seeing my aging parents. I had to cancel a trip to the desert this weekend with my girlfriend because neither of us can do the 2 hour drive. I have friends and doctors telling that I need to stop working but I feel like if I stop then I’m a complete failure. I’ve spent 22 years building my business to what it is now and the thought of walking away just kills me as it brings me such joy and has been my one escape through this journey of hell.
I’m considering setting up a makeshift work space in my living room — like I did when I first becamse an esthetician almost 25 years ago. So if you’re my client and reading this know that my plan is to continue working but I may be having you come to my home temporarily if the remediation doesn’t happen in my office in a timely fashion. In the meantime I ordered some spiffy face masks with charcoal off Amazon and will be wearing a mask when I go to work. I also have an expensive air filter in the bathroom there.
The good news is that people who don’t have auto immune issues can be in a space with mold and never be affected. Truly it’s not good for anyone but most people have a body that can detox bad stuff out. Part of my genetics is that I don’t detox well so I’ve been laying in my sauna for 30 to 60 minutes daily so that I can break a sweat and get the mold out of my body.
Please think good thoughts for me and my family as we navigate this new hell. You may see a GoFundMe posted here as I’m trying to raise money to get back to Stemaid as my doctor there says she can help get the mold out of me AND get me back into remission from Lyme and my other infections. She saved my life once — I trust she can do it again. She lovingly told me though that this time I need to 100% commit and not allow ANY outside stressors intefer with my healing. She said eliminating toxins doesn’t just mean getting rid of mold and bacterial infections — she’s a wise woman that Dr. Hanly.
Thanks for reading and following! There’s no way I would’ve survived the last couple years without my peeps and all your support!
Wendei
