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Sibling Teens with Lyme

$1,000 of $5,000 goal

Raised by 32 people in 2 months
Hi, there. I’m Phoebe. (PJ) If your here, you may already know, I am a mom trying to raise money for my children who have Lyme Disease & Mold Toxicity.

I am also a wife, a loyal friend, a writer, & a customer success manager by trade. I have Lyme too and I am here because I was asked to write my story, in hopes that some good people out there, strangers, would read and find it in their compassionate hearts to help us.

This past year, my family has lost more than anyone can imagine. Our home, my car, everything we owned-(a entire 2800 sq.ft house of belongings), my job, our friends, our family and the worst part is we have lost our health to Lyme disease. All four of us are sick, me, my husband and my 2 kids.

Our focus is the children ... Because kids don’t deserve to be sick so young. Because they don’t deserve to have to worry about not affording treatment. They shouldn’t have to worry about trying to prove they are sick to their father or anyone else who doesn’t believe.
Our story is unfair, unlucky, & unbelievable that so many things could go wrong with one family. It's taken everything I have to keep going and I never imagined this would be our life.

Lyme disease is pretty well known by name, but many people don’t know it's devastating and debilitating symptoms, it’s serious complications, and that it comes with a price tag that would bankrupt pretty much any normal family with multiple people being sick.

There’s also conflicting information surrounding Lyme, to which we certainly were unaware of until now. The very definition is challenged, splitting the medical establishment in half. I didn't know that I would be battling doctors, the medical system, the court system, family, friends and my children's father to validate our illness. I didn’t know I would be spending hours, days, weeks researching to try and find help for my family. I didn’t know I would be faced with such adversity that it would make me question life itself.

Fall 2016, I got a flu vaccine and reacted badly, a few weeks later, I suddenly got a bunch of symptoms. Simultaneously my son was being bullied at school & having a really hard time and he started to get symptoms too. Not like a flu, but weird symptoms that came and went capriciously. At first I thought I was getting old, or working out too hard, waking up with my body stiff, unable to bend my hands, foot pain, wrist & elbow pain, pain in my knees and I was so tired I felt like I wasn't sleeping at all. I have always had fatigue but not like this.
My son was different, he gained almost 20lbs in a month, and was having migraines daily, nose bleeds, skin infections and constant GI problems. He was always sick with something throughout his young life but this was different. And I AM NOT THAT OLD!!
As our symptoms list grew we were desperate to figure out what was ailing us. We went to doctor after doctor.  A few months later, my husband and my daughter also began to get symptoms, migrating pain, air hunger, migraines, muscle tremors, night sweats, cognitive issues, eye floaters, light sensitivity, cysts, and weird brain feelings. We were perplexed, I had been diagnosed with Fibromyalgia, the kids with asthma, and my husband saw a orthopedic surgeon for cortisone shots, but none of us really put it all together yet, nor did we know what caused it all.   

A year later in fall of 2017, after a hidden long-term water leak, we discovered that our home was filled with scentless toxic black mold in our walls, subflooring and ventilation. We were immaculate and clean people, and had no idea. Toxic mold, can actually make you seriously sick, not just respiratory issues. It causes multisystem, multisymptom illness, and can lead to autoimmune disease, cancer and even dealth. We had the mold tested and it was the worst toxic species in existance, Stachybotrys. This was what was causing the sudden onset of all these symptoms, this was the catalyst to where we are. The mold was so bad we had to move, immediately -like-the house is burning down and get out type move. Even more tragic, and just like a fire, we had to leave our all of our belongings because it was all contaminated. Nothing can get rid of the toxins that were embedded in our furniture, books, dressers, clothes, baby pictures, etc. Bringing anything with us would cross contaminate our new space & keep us sick. We had to wear special suits and masks, head to toe while we spent weeks throwing away our lifes possessions. It was traumatic for us all, especially the children. 


The mold seeping threw the wall behind our cabinets in our kitchen.


Peter & I in our protective gear, getting ready to demo all our stuff in our house Nov. 2017

Homeless and with nothing but our porch & shed belongings, we moved in with my mother in law. We went to a Mold Toxicity specialist in Virginia that cost $3000 with the money from our security deposit return &  from some friends who helped us raise up the rest . We spent the entire day there, and were all diagnosed with CIRS (chronic inflammatory response syndrome) aka Biotoxin Illness or Mold Toxicity. The mycotoxins in our bodies are unable to leave naturally. The year long treatment plan for us all was more that we could afford so we went home feeling defeated but validated that we had found out what was making us sick. Little did we know this was only the beginning. The mold has brought our bodies to toxic overload, creating the perfect environment of inflammation for the real problem to resurface.

I started deeply researching upon return, only to find that many people with CIRS, also have Lyme Disease and that in most cases, Lyme was the root illness. What they described was me, was the kids, was my husband. I wanted to be sure of what exactly we were dealing with before we did any treatment, so I made an appointment with a superb LLMD (Lyme Literate medical doctor) in New Jersey for us all in January.

A week before Christmas though, after 10 yrs of working as a CS Manager, I was fired unjust-fully. My boss gave me a hard time for using my vacation days as sick days, and said I took too much time off, which was not true, I had meticulous records and only taken 1 day over my alotted vacation time...Regardless, the lack of compassion was shocking after everything I had built there. I was too exhausted & sick to fight.

Panicked, I still kept the appt. with the LLMD but changed it for just my son and I, it’s all we could afford with my last check & my husband paying everything else. After intensely reviewing our labwork, symptoms & cases for 3 hours, we were clinically diagnosed with Lyme disease, co-infections of babesia, bartonella and ehrlichia. It all made so much sense. Again, we were stuck with no finances for treatment. We banked on our tax return coming in March.

By January I was getting sicker. The kids were also getting more symptoms, frustrated that they couldn’t physically do what they used to, constant headaches, extreme fatigue, joint pain, muscle pain, constipation, GI problems and most alarmingly more cognitive issues. We kept telling them to hang on till we get our taxes and then we will get treatment. My husband was working 50 hours a week, supporting us all but it wasn't & still isn't enough to get by and to get treatment too.


By the end of the month, we had not heard anything from the children's father, the kids had some difficulties with him, since he did not believe they were sick, nor in mold toxicity. They had decided to primarily live with us due to this. One cold morning I got a knock at the door, I got served with a scathing, vengeful custody petition full of lies. It was horrid. Accusations of me being having mental health issues & poisoning my children with vitamins & supplements.

The children were hysterical, hurt, betrayed, frightened, angry and most of all resentful; being old enough to understand and articulate what they want at 15 & 13, this was not it and even more absurd, he was pushing for full custody with supervised visitation. It’s not worth putting energy into all the details of the 30 something page petition, but I will say this, he thinks that the children are faking their illness, "psychosomatic" is his words, and that I have brainwashed them into believing they are sick. If he wins custody of the children, their health will be neglected, they will get sicker and God help us if something more serious happens. 
 
I had to use all our tax return on a lawyer, which meant no treatment.  The kids have been so emotionally upset due this custody case and it was weeks of shouting matches on the phone. My daughter screaming at her Dad to believe her. It hurt my soul as I couldn't help but hear her 2 rooms away. This case has caused 10,00 times more stress for everyone, as if we don’t have it hard enough. 

We used our health insurance to get as much help as possible, which included obtaining Lyme Western Blot testing for all of us.

Our testing came back with positive Lyme bands and more co-infections of additional tick born infections: Rocky Mountain Spotted Fever & Mycoplasma, with additional high levels of EBV (Epstein Barr Virus). Our regular doctors agreed that this is beyond their scope of their abilities, and that seeing a LLMD is the right path for our proper care. Here’s our problem, there are no LLMD’s that take insurance, it’s all out of pocket-which we cannot afford. Just for one appointment it’s $800.




Right now though, our priority is to raise $1000 to get both kids the proper lab tests through DNA connextions -we need accurate tests for court which are $500 a piece. It is essential we get these tests because of the custody case. Furthermore, in order to qualify for any grants we have to have the proper lab tests and it hurts my soul to be unable to make any kind of move for treatment while I am sick myself.

Anything we happen to raise beyond that will go to appointments for them with a LLMD in DC. Treatment, supplements, medical supplies, vitamins, IV therapy, ozone, are also essential for them to get better.


 
My family is everything to me. The children have so much ahead of them, I don’t want them to lose hope in all this tragedy which they already have in many ways because we lost our home & being sick when your a kid absolutely is unfair.

We cannot express how much this means to us, and Christina is such a blessing to be helping us. I don’t know how I will ever repay her or any of you. Thank you so much for reading our story, I know it took time and we are so grateful for any help you can give.
Love & Light.


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Sorry for any delays, we have been very caught up with reality & trying to take care of the children, ourselves & of course I have a million things happening at once with this court case & not having an attorney. Thank you to everyone who compassionately & generously donated. I cannot express my gratitude enough here, without all of you we would be in a different place of stress and our appreciation is so huge! We love you all & special thanks to Christina for all of your help, your blog post, instagram posts, your support, your gifts to many who donated. I wish I could repay you Christina and maybe someday I will be able, but for now all I have is my words. I wish more people were like you in the world! Many blessings everyone!
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Thank you everyone for your generous help, kind messages and empathy. We are so excited to have hit $500! I ordered my daughters DNA Connextions lab kit today! One kid down for testing and one kid to go. I am so grateful for All of you and a special Thank you to Christina. I can’t even express enough gratitude for all she is doing to help us as well as what she is doing for all of you for donating! If only everyone in the world had a heart like hers!
We are all trying to keep our heads up, but just wanted to share a quick update! Much love to all!
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These are some pictures of our journey, last fall when we lost our house and had to wear suits to go inside. Then earlier in the year, Zoe trying her best to be a normal teenager. You cannot see whats happening on the inside nor how hard it is for her to physically do what she is doing.
Stachybotrys
Us with masks
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$1,000 of $5,000 goal

Raised by 32 people in 2 months
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