AnnaMarie has gone from an aspiring and confident dancer in a renowned dance company, an avid hiker, a lover of all things nature, and a straight A and B student ..... to an extemely mentally and physically fatigued young lady that too often is bedbound, fearful of nature, a homebound student struggling to complete only two courses, insecure and suffering increasing social anxiety, and is fighting for her life.
After suffering the symptoms for over a year,
AnnaMarie was finally diagnosed with Lyme disease at age 7. The disease was treated improperly and remains in her body even now at age 15. During the years we searched for a Lyme Literate MD to treat AnnaMarie, she became more and more immune suppressed which has allowed viruses, bacteria, and parasites to cross the immunity barrier and attack her body systemically. EVERY organ, muscle and joint has been affected. Her blood has become so thick that she takes 325mg aspirin daily as well as blood thinning supplements. AnnaMarie has a mutation of the MTHFR gene which means her body is unable to remove biotoxins or environmental toxins without medical aid. Having unknowingly lived in a home harboring mold for two years, AnnaMarie's body stored mold spores carried through the ventilation system which brought her closer to death than the other diseases. The doctor was astounded and made it very clear that we are lucky to still have the chance to do what we can for AnnaMarie's life. Some of AnnaMarie's health issues can be eradicated but as of today, the Lyme and complications from the MTHFR mutation can only be brought to a life-long maintenance level.
What we are facing right now:
AnnaMarie's medical treatment- now on oxygen and at times dependant on a wheelchair, the doctor has been treating AnnaMarie with supplements and weekly IVs to improve her immune system before administering the most dangerous part of her treatment. A mediport has been implanted into her chest and daily treatments for fungemia has begun. AnnaMarie's body chemistry is being affected and weekly CBCs are run to make sure her organs don't shut down. Supplemental IV treatments are given to counterbalance chemistry changes. The out of pocket cost projection for the next 12 months=
Mediport placement = $3,876 (after insurance)
Doctor appt. @ 3 weeks $450 = $7,650 yr
Oxidative IV therapy @ weekly $150 = $7,800 yr
AutoImmune IV therapy @ weekly $250 = $13,000 yr
UVLrx blood therapy @2x/wk $560 = $29,120
Visiting nurse and Mold/Lyme/Hydration IV = $800 for 4 months (after Insurance)=$2,400 yr
Specialized prescription meds due to MTHFR = $unknown
Home-Mold spores have settled into all things pourous in our home and onto all surfaces. We are living apart while my husband painstakingly throws away all of our belongings with any kind of fiber, puts non-pourous items into storage that will slowly be treated for mold spore removal and brought back, and prepares our home for complete mold remediation. The remediators have removed the mold growth and now will address all walls, floors and ceilings with mold spore removal treatment. A build up of dead mold spores is just as deadly as living mold spores to AnnaMarie's body. Only then can we begin the slow process of rebuilding walls, all flooring, new beds and bedding, and lastly, furniture. The estimate for full remediation is
$12,700 (just to be able to get back into our home)
Although totals for one year are listed, treatment is projected to last 18-24 months followed by lifelong maintenance ptotocols. Frequent medical testing, special supplements, and pricey dietary changes are not listed. The immediate need to bring our family back together in our remediated home and continue treatment for the next two months is $23,956. We will continue doing what we can medically and will refurnish our home as we can.
AnnaMarie has tested well into the Genius IQ range, is empathic, and annoyingly observant :-)
She is aware of the financial picture and has asked that we just stop the treatments and let her go. She will understand the impossibility of even considering such a thing when she has a child of her own :-)
We want to thank you in advance for your time, support, and help. ANY amount is helpful and appreciated and, if you are not able to donate, passing this along to as many people as you can is equally helpful and appreciated :-)
Mike, Karen, and
The new practice we were pursuing spent four hours with us and we left very impressed and hopeful. Five doctors are in this practice, one of them on the ILADS board :-). They confer with each other, are more accessible, are more organized, and a good bedside manner. AnnaMarie has had 36 hr break to recover a bit and, though the effects are still strong, she begins the new protocol this morning.
I am clueless about how she will tolerate this one but am hoping this protocol will be less aggressive and more gentle.
AnnaMarie will be absent today for 3 reasons. The first reason is her rapid decline the past few days has caused debilitating mental and physical fatigue. The second reason is she will be recieving a "rescue" treatment in the physician's infusion room. The third and best reason is the new doctor we are hoping will take AnnaMarie on has moved her appointment up from the 23rd to tomorrow after reviewing the severity of her case.
We are aware of the quarter's end. As you probably know, AnnaMarie is "freaking" about missing classes/tests tomorrow. Please let us know if there is a way she can keep her excellent standing. As always, we have much appreciation for you ALL!
Below is a note apprising you of the recent reality of AnnaMarie's condition. She AND we were hoping for no or fewer communications of this tenor but, it appears to be "Gettin' Real"
We are still going in circles with these illnesses and treating the most prominent as those arise. Currently, AnnaMarie's coinfection, Bartonella, currently is very strong causing more hair loss, constant menstrual spotting, stretch mark like rashes over body, increased depression, increased neuro. issues ie:tremors...hallucinations...myoclonic jerking...insomnia, increased lower back, neck, and hip pain AND decreased brain processing and visual acuity.
Reintroducing previously successful antibiotics to her body has quickly proven to be toxic. Currently she is still on her vigorous oral medication regimen as well as receiving IV Meropenem in the mornings before school and in the evenings, 4hrs IV fluids after school while on oxygen, and a good dose of IV phenergen at bedtime to aid with her nausea (by product being SLEEP! :-)
We are entertaining another doctor's opinion on 11/24 (NOW 11/2!) however, our visiting nurse ... now our friend...knows our current doctor has brought many many people into remission. This nurse works for the home infusion company so, no matter who our doctor is he still will be our nurse...my point being, he has nothing to gain by puffing up the doctor's success.
I will let you know how things progress :-)
I am related to Alex Wilson. He married my niece Sarah. I just wanted to let you know that I am praying for you and will continue to everyday. I am so sorry you are going thru all of this. I can't imagine being your age and dealing with so much. I am 43 and have Lyme but I believe I am getting better. It really is difficult to tell sometimes. The treatments make you feel really bad. We are pretty sure that I have had it for at least 5 years. I believe I may be on the right treatments now, as of last October. My biggest issue is "air hunger". The lesser issues are anxiety, insomnia, and extreme fatigue. I truly hope you don't lose hope. Just continue to pray and having a positive outlook can help, even though it can be difficult. Just remember, you are loved. I will be praying.
Praying like crazy for the new treatment plans to work for both of you. I am holding you up to the Lord for His healing. I am claiming in His name that you will be healed! Amen.