Help Bring My Daughter Back to Life
In this weakened state, Dana had multiple life-threatening open surgeries for spontaneous intestinal trauma. At many points in her 30's, she weighed only 70 lbs. Doctors in the most prestigious hospitals in the country told her nothing could be done...to "keep herself comfortable" with morphine as she waited to die.
After half a lifetime of unremitting pain and upwards of 100 doctors, in 2015-2016 she was diagnosed with Common Variable Immunodeficiency (CVID), chronic Lyme disease and multiple co-infections, severe Chronic Inflammatory Response Syndrome and Mast Cell Activation Syndrome. Through the incredible generosity of donors here, we were able to use the first $30k to start her on IgG (immune) therapy as we battled for insurance coverage. But it turned out that wasn’t the whole story…
In 2016 she declined rapidly, became allergic to almost everything in her environment (including foods and medications), couldn't eat solids for 7 months, became overwhelmingly intolerant to smells, tastes and touch, and was ravaged by constant excruciating joint pain. Her skin itched and burned so badly that it sometimes kept her awake for 10 days straight. Every system of her body rapidly broke down and her symptom list stretched over 4 single spaced pages. Test results became increasingly alarming.
We discovered she’s been living in a covert black mold infestation for 35 years and happens to be one of the unfortunate few with some dreaded genetic defects (HLA "multi-susceptible," MTHFR, among numerous others) that make it impossible for her body to recognize or detox mold, Lyme, many medications, and the hundreds of thousands of artificial chemicals in our environment/products. In a desperate attempt to fight a lifetime of toxic buildup, her body is mounting an exponentially increasing inflammatory response. But since the immune system and detox pathways are broken, the response cycle cannot complete itself and inflammation multiplies without ever resolving. The pain is unbearable, constant, and growing. She’s literally being poisoned to death from the inside out.
Doctors ordered her to leave her home, take no possessions, buy industrial strength HEPA equipment, and completely restock her home with 100% non-toxic, organic/natural furniture, products and items (even all this won’t help her without special intravenous detox). This would be financially impossible for most healthy people!
Dana is a deeply sentimental person. She hasn’t yet begun to mourn the loss of a lifetime of letters, gifts, family heirlooms, collections, artwork, artifacts, handmade projects, journals, etc. Perhaps a few items can be saved, but it's very costly to have them cleaned properly, thus impossible at this time. We underwent extensive mold testing and remediation, followed by the same process in the NEW apartment, which unbelievably also tested positive for black mold! This added to the already astronomical medical bills over $40,000 (and pending $40,000+ in home repairs, since whole walls have to be torn down/gutted, before we can sell the house to help with costs).
Through all of this pain, frustration and loss, Dana has never played the victim. She’s been a source of selfless light, compassion, creativity and wicked sharp wit. She's a gifted writer, an advocate, insatiably curious student, artist, nurturer, and most notably, a deeply insightful healer and empath. She sees beauty everywhere, in things most people take for granted. Everyone feels cherished, validated, understood and loved in her presence. In the face of death her greatest regret is not what SHE missed in life, but the missed opportunities to be there for her friends and family in person for the moments that mattered to them.
To give a few examples of her spirit: while bedbound and barely able to communicate, she launched SacredScars.org ; a body-positive community (and soon to be printed book) celebrating the beautiful imperfections that comprise our unique personal mythologies. She kept up the art blog SheWalksSoftly for 9 years, and when that became too painful began sharing art all day on Instagram, even with her hands in bandages. She’s eager to be of service and move forward with her career in integrative Depth Psychology. Dana has SO much passion, love and wisdom to share.
This fund has been a Godsend, and we are eternally grateful. But she’s at an impasse with treatment until she can begin an IV detoxification program to lighten the toxic burden causing her systems to fail. It's a tremendous expense, and unfortunately cannot be covered by ANY insurance plan. She is dying...excruciatingly painfully. No one should have to suffer the way Dana has. Please help my beautiful daughter come back to life!
2016 was...not my year. My already failing health declined rapidly, I became allergic to almost everything in my environment and nearly all foods, no matter how benign. I couldn't eat solid food for much of the year due to a partial obstruction of my intestine. I became ravaged by excruciating joint pain. I almost completely lost my ability to walk and use my hands. My symptom list stretched to four single-spaced pages. I started fading fast as every system of my body broke down. Hospitals, doctor's offices (repeat)...no solutions. The IgG treatment became increasingly difficult to tolerate when it should have been becoming easier. Something was terribly wrong.
We discovered that I've been living in a black mold infestation for 35 years and happen to be one of the unfortunate few with some dreaded genetic defects (HLA "multi-susceptible," MTHFR, among numerous others) that make it impossible for my body to recognize or detox mold, Lyme, other biotoxins...or the hundreds of thousands of artificial chemicals in our environment/products most people don't react to. This means the accumulated poison of 35 years living in black mold, and every spritz of hairspray, every dryer sheet, every whiff of wall paint or car exhaust...and the toxic byproducts of hundreds of bottles of medication and anesthesia...are bathing, and destroying, every cell of my body. In a desperate attempt to fight the onslaught, my body is mounting an exponentially increasing inflammatory response. But since the detox pathways are broken, the response cycle cannot complete itself and inflammation multiplies without ever resolving. The pain is unbearable, constant, and growing.
I was ordered by doctors to leave my home, take none of my possessions, and buy an industrial strength HEPA vacuum, all natural replacement household products, furniture and clothing. This would be financially impossible for most healthy people, no less someone who has been bedbound and too ill to work for years. I currently stay in my new room with my salvaged TV, laptop, phone and a few articles of clothing. We used the last of the fund to buy me a safe mattress and cheap used dresser, but cannot afford any other furniture in the house. My dad and Casey have poured their hearts, souls and resources into helping me survive. All of our savings are gone.
Most of you know I'm deeply sentimental, and my home was my personal ever-evolving museum. I've saved every letter and every gift I've ever received. In the chaos I haven't yet even begun to mourn the loss of thousands of sentimental items, family heirlooms, collections, artwork, artifacts, handmade projects, journals, etc. Perhaps a few items can be saved, but it's very costly to have them cleaned properly, so it's impossible at this time. We underwent extensive mold remediation and testing, followed by remediation and testing in the NEW apartment, which also tested positive for black mold! This added over $40,000 to my already astronomical medical bills.
This fund has provided life-saving immune therapy for me. But I'm at an impasse with treatment until I can begin an intravenous detoxification program to lighten the toxic burden causing my systems to fail. It's another huge expense, and unfortunately (since genetic medicine is in its infancy in this area) cannot be covered by ANY insurance plan. IgG alone, while necessary, cannot save my life. Though I was disheartened to find out just how badly I lost the genetic Lottery, we finally have answers and a chance to reverse some of the damage. If I make it through, I have big plans to transmute these experiences into a practice I hope will help many people who are lost and desperate to heal.
It pains me to add a crazy twist to this surreal journey. Everyone was so generous before we even knew the full story. As someone who was always much more comfortable giving than receiving, my heart nearly burst from the compassion and kindness offered to me when the fund was created. It lit the fire of survival and intensified my desire to pay it forward in ways I cannot remotely attempt to describe. It's incredibly hard to reach out for help again. But I would be very grateful if you would take a moment to share this page and get it circulating. Every penny helps. Much love and gratitude to you all!
Also, after months on a strictly liquid diet due to a partial intestinal obstruction, I've been able to start eating a little bit of solid food again. I've gained 8 pounds since my dangerously low hospital weight back in May (I'm only 5'1", so 8 lbs is significant)!
THANK YOU ALL for setting me on the road to recovery as we fight for insurance! I cannot possible express all this has done for me.
As I wait for medical clearance to resume IgG (it's still the core of my treatment plan), this amazing fund has helped me afford mast cell stabilizing medication, which is quite expensive and also not covered by insurance and. I'm still so grateful every day for you all! Much love.
Love and Gratitude,
Try a acupuncture doctor.
Did you get an environmental inspection of your property?
If any of you guys are dealing with indoor mold and poor air quality, please contact a Hi Tech Air Solution Sales Rep and join our Facebook group here. "The Air Reactor" is not only allowing folks to save their possessions after water intrusion and living in water damaged buildings, but it is also saving homes to where botched remediations failed and cross contamination would have otherwise made folks leave. Please join us in our discussion of this important new technology and find our Facebook group here! Also, surviving mold . com is an important website Read about the CIRS labs along with toxin binding drug Cholestyramine. That a treating the mast cell, along with avoiding mold and using the Air Reactor can make a huge difference! Also, eradicating the MARCoNS which is also common with mold exposure and the low MSH that follows... https://www.facebook.com/groups/TheAirReactor/ angelas @ hitechairsolutions.com Prayers for you and family!
Not all black mold is bad, so I'm assuming you had it swabbed and air analysed and it was Stochybotrys? I've experienced a very similar story to yours however none of the doctors said anything so drastic about the mold. In fact, the last house I was to rent but didn't when my husband and I found out it had over 300K of aspergillus and over 400 Units of Stachybotrys per cubic meter of air (after having the same mold testing company come to test that found mold in the last place we rented) but the property management company went right out and rented out the property to someone else and didn't give us our first month's rent back even though we didn't move in... knowing full well of it's toxicity. I was told by the mold testing company to NOT live there and to not go in the house without a mask. There are NO laws against mold. In fact it is perfectly legal in Massachusetts to rent a property with toxic mold because it is NOT violating any law. The only thing you can hold a landlord responsible for is if there is an active leak or a damp environment that makes it NOT habitable. Otherwise it's perfectly fine for mold to be in any rental property and you can't do anything about it except find a "leak" violation and if it happened before hand like the other property I almost rented, they don't have to remediate and they can simply rent it to someone else. I even went to the board of health in the town and they told me what I already knew. My pulmonologist wouldn't even provide me with a lung test to prove my symptoms from the prior apartment. NO ONE wanted to get involved especially the doctors. I too have chronic Lyme, I had the rash etc., first in 1989 and have been sick on/off since I got Mono at age 15 four years prior. I too had chronic tonsillitis and strep etc., all through high school. I am now 47 and I still have a ton of what I call "quirky" health issues. I too have half of the MHTFR but it's not as serious as most folks make it. I also have had gut issues but I do not have positive HLA for celiac so that's good. But I do have severe reactive acne rosacea from my environment. I had patch testing and my back was "normal" but within two hours my face burst out swollen and red, pustules and oozing...the doctor had never seen anything like it. I too was tested for IgG etc;., and all came back normal. Just chronic inflammation (in my eyes and systemic but unknown) Next month I am having my parent's house tested for mold because I have lived here for over 30 years on/off with them. My mother is on 24/7 oxygen and my Dad has chronic sinus issues. My brother died from an accidental overdose of pain meds and he had developed and unknown seizure disorder. Many medical mysteries in this house. I've had neurological issues as you're described and they've come on strong, lasted for a few years and then left as quickly. I have chronic inflammation, I too wasted away to almost nothing and I'm naturally thin but not what I weighed when I was sick which was only 93 pounds in 2009 at 5'8" til' 2011 when I started to slowly get healthier ironically while living with toxic mold. Though my breathing and headaches worsened. You are not alone in your suffering (unfortunately). If you had doctors tell you to leave your things than at least they understand. Not all objects need to be removed some can be washed but many people do toss it all out to be sure. I didn't toss out what I was told wouldn't hold onto the mold but I did get rid of a lot of things. I wish you well on your healing journey I know this isn't easy on you at all. Good to see there's some progress. Just be careful of certain "doctors" who are more interested in expensive treatments that don't really do as much good as harm. Feel free to connect with me I have a coaching practice and holistic wellness practice all virtual due to my health challenges so if there's anything I can do at a distance let me know. I don't charge for the first 3 months of services for anyone that is not working due to health issues and I created low-no cost and scholarships for my services for this cause as well. Unfortunately there's a sisterhood of us out here. At least now with online connections we know we're not alone.
There's theresa great community for people with severe allergies here: https://m.facebook.com/groups/4871812419
There's a great community for severe allergies here:
Hey Dana. Are you in any of the mast cell groups on FB? You may also want to check out www.rccxandillness.com and look into EDS as your umbrella diagnosis as well since you have most of the comorbidities. I hope you're not going to any Clearwater,FL clinics for treatment but if you are, please private message me before you do.
Sending prayers your way. We found out a couple of months ago we had black mold. We have been sick for the past 3.5 years. Many appointments, ER, and doctors visits, now we finally have an answer. The house was remediated and treated. We are now doing liver flushes to help with our detox. Unfortunately we weren't able to raise any money so we have yet to figure out how to pay for the bills.
I will include you in my prayers. My 28 year old daughter is very sick tons of anxiety, runny nose, kidney issues, headaches, list goes on. She had to leave a rental home with most belongings left behind. The landlord delayed mold remediation. She needs to get tested. Bless you.