- Source of the Story
- Provided to Health Rising
- Resource Type
- Patient Story
- Flo Levia
- Chronic Fatigue Syndrome
- Mold sensitivity
- CIRS (Chronic Inflammatory Response Syndrome)
- Other diagnoses
- insomnia, intracellular infection (C.Pneumoniae, 2013), chronic sinus and bladder infections (a few kidney ones too), hip bursitis, sacro-iliac and knee instability (2 torn menisci), cancer of the bladder (Stage 2a, 2007 and 2008).
- Disease Course Over Time
- Onset was slow, with major crashes at several key points. I was less and less able to “pick back up” from these as I aged, because the challenges just kept on coming --- until I found what worked for me.
- Type of Onset
- gradual non-flu like
- Approximate Date of Illness Began
- >20 years
- Functionality at it's Worst
- Mostly homebound
Pain that kept me awake (esp. the migraines), and terrible fatigue and brain fog were present since age 29. Multiple infections, environmental, chemical, and drug allergies, and sensitivities. Sinus, throat, and bladder infections, many chest infections, and allergies so strong my palate, ears, and eyes itched and were blocked tighter than a drum. Brain fog, vertigo, light, and sound sensitivity so bad I couldn’t read, watch T.V. or follow a conversation very well.
I almost became a hermit in my early 60’s --- and I’m an extrovert! The brain issues and the severe unrelenting pain all over were the most debilitating and discouraging. One weird symptom --- getting static electric shocks from even rolling over in bed. They were gone when the mold neurotoxins were gone.
- Treatments That Made A Big Difference
- CranioSacral therapy, Conscious EFT as taught at neftti.com (not all EFT is the same!) NAET with homeopathic remedies --- but only with the last practitioner who did this. She is gifted and got rid of the last of my mold neurotoxins. The previous NAET person did not help
- Treatments That Helped
- Healing Touch, Healing From The Core, Heart-Centered therapy, acupuncture, my laser (infra-red and red light)
- Treatments That Had No Effect
- A huge no. of supplements with no improvement. Physio and chiropractic. They actually help more now that I’m better, when I judge I need it, but back then it felt like I was throwing money away!
- Treatments That Made You Worse
Shoemaker protocol for CIRS, but it was more the WAY it was implemented than the protocol itself.
Prolonged antibiotic therapy for the intracellular infection. It made the CIRS worse, but that hadn’t been diagnosed yet. Methylfolate, only because the amount was too much. Dr. Ben Lynch advises “Start low, and go slow”!
- Present State of Health
- Fully recovered - no restrictions at all
Disease course over time: identify any triggers, how sick you got, anything that changed over time: just a paragraph or so (or more if you want) that generally explains how it happened
I got sick frequently in childhood and young adulthood with throat, sinus, kidney and bladder infections. I suffered both abuse and neglect, poverty and poor nutrition. This went back generations (epigenetics!). I was able to graduate from university in nursing and hold down full-time jobs before the kids came. I worked parttime after moving out of the moldy house (1986), but was chronically exhausted with migraine headaches, severe allergies and PMS, anxiety and many musculoskeletal issues.
A strong drug I was mistakenly told I HAD to take (long story), kicked me over the edge into the abyss in early 2001. I could no longer work, think, listen well, or even follow a conversation. I had vertigo and brain fog, light and sound sensitivity, lost my hand-eye coordination and my balance, and hurt all over my body --- so very little restorative sleep.
CranioSacral therapy (based on Upledger’s work) weekly decreased my migraines, and slowly I began to improve. I took CST courses starting in 2002 and began practicing part-time in 2006. I took many different curriculums and got something out of them all, but the pain was increasing and by 2009, I was unable to work or even walk much.
I’d had years of chiropractic/massage/physio and a bit of acupuncture, but nothing seemed to work. I had a cortisone shot in the worst hip in 2009 and the pain eased --- for only 2 and ½ weeks! The out-of-town Integrative Medicine clinic I was referred to, gave me prolotherapy injections (your own concentrated platelets) in my S/I joints and lower lumbar spine. My mobility came back!
The Naturopathic Dr. associated with the clinic figured there must be some underlying infectious process going on, so gave me about 24 IV peroxide treatments over a period of 4 months. My energy came back! I was more functional than I’d been in years. Six months later it all came crashing back down.
I saw 2 geneticists who could pinpoint the problem areas. I had 12 homozygous “bad” alleles in the methylation cycle alone (which could account for the too low amounts of any of the “feel good” neurotransmitters), an MTHFR problem (so uber-sensitive to drugs, supplements, etc), and the HLA gene that predisposes you to celiac disease. I went gluten-free and made small adjustments to an already pretty good diet (when I got cancer, I REALLY cleaned it up). Your genetics does not doom you, as every time a new cell is born it can decide to express the bad alleles, or not. Lifestyle is a much larger factor.
By this time I was able to get a special blood test that diagnosed me with an intracellular infection. C. pneumonia in this form attacks the lymphocytes and is crippling to the immune system, and VERY difficult to eradicate. I needed a whole lot more IV therapy, but my veins were shot, so it wasn’t feasible. I went on multiple antibiotics for the next 4 months, then another the following month (severe bronchitis), and following this was the worst period of my life.
It was like the 2001 crash, only even worse. CIRS was finally diagnosed, but the treatments seemed to make me so much worse (Shoemaker protocol) --- mostly because no attention was paid to my feedback of the worsening symptoms! I could no longer handle my health or much of anything else. My family wanted me tested for Alzheimer’s as I had lost a lot of memory and cognitive functioning, and felt like my brain was in a constant electrical thunderstorm!
I had already made my peace with God and family members, praying for death, when one son said they were expecting a baby (my first and only grandchild). The news gave me just enough of a jolt to ask God to help me, because I had no more ideas. A special Mindfulness and Meditation course just for people with chronic illness was advertised. I took it and realized that a few minutes of peace and calm WAS possible, as was neuroplasticity of the brain --- even at my advanced age! Then I found out about a tapping Summit (the tappingsolution.com), tapping for 2 hours/day for the 10 days. It felt more calming than meditating!
From there I took courses, and particularly recommend the National EFT Training Institute, with their particularly safe way of teaching EFT. In the certification course, I slowly transformed my nervous system to spend more and more time in the ventral vagus parasympathetic state, and less and less in the high sympathetic or frozen dorsal states.
As that is going on, the whole body can heal and work better because it is no longer in a chronic inflammatory state. Body, mind and spirit work together and influence each other. I uncovered limiting beliefs (instilled by attachment issues/old traumas) I never knew I had, and changed them to more empowering ones that reflected the real truth of who I was. I could think and behave differently and be open to new possibilities, because my history no longer decided my present or future, and because I was feeling better all the time.
Although I still have some back and joint issues, I am a happy woman with passion and purpose and SO grateful for the quality of life that has been good since 2019 --- even through COVID. At nearly 70, I have taught workshops, coach 1 or 2 people at a time to help them reach their health goals, and am starting to work on my second book!
- Words of Advice
- It’s never too late to heal --- I was a senior, go figure! Don’t forget to ask God/the universal energy field or whatever loving energy outside of yourself that you can connect to, for your heart’s desire --- to experience a healthier happier life. The answers will come. Keep your attention on what you desire. Take baby steps. Give every physical and emotional “part” of you that is suffering, all the compassion and love you can give them. You do it for others --- give that gift to yourself! People (and all our bits and pieces) are loved into change.
- Suggested Resources
For inspiration and plenty of helpful info wrapped in storytelling, you can read my book “There’s A Leak In My Boat! The Challenges and Gifts Of My Journey Through Chronic Illness” ( https://www.flolevia.com/). There are a ton of Resources at the back.
For the best EFT programs that literally transformed my life, go to neftti.com. There is a free 5 part series, as well as the courses themselves.
thetappingsolution.com is a great resource if you can’t afford to take courses. I got their books (Nick and Jessica Ortner) at the library.
To understand polyvagal theory --- any book by Deb Dana. My favorite is “Anchored: How To Befriend Your Nervous System Using Polyvagal Theory” (Sounds like a hard read, but isn’t).
“The Sovereign Health Solution: Heal the Psycho-Energetic Root Causes Of Chronic Illness” by Dr. Eva Detko.
“Thriving Through Uncertainty” by Tama Kieves
After many years of being and many health trials, Flo used alternative and mind/body treatments to return to full health at age 70!