We wanted to post and update all of you about Mykhailo and his Lyme journey.
We had a phone consult with Dr Frid on December 26, 2018 where we found out that the results from Myk’s last set of tests show a change. Mykhailo’s neuro strain has gotten a lot worse so we have to go back to New York City in March. He will go through more tests and will be reassessed to see where he is at and what changes may need to be made.
Mykhailo has started another medication that will hopefully help with this neuro strain. We are also waiting on a few supplements from his specialist to help with his neuro issues as well.
Thank you to everyone who has supported Mykhailo during this journey. We appreciate it very much.
UPDATE (October 13, 2017)
After our followup with Dr Frid yesterday, and after 4.5 years of Mykhailo being misdiagnosed in Thunder Bay and across Canada, it has been confirmed that he has tested positive for two types of Bartonella Lyme disease. He will be starting adult treatment hopefully in two weeks for 2-3 months. His body will go through a herxing process while the antibiotics attack the disease. It will not be fun for him and can make him very ill and week. It's almost like having a very bad flu during the herxing. His body will be trying to get rid of toxins so he will not feel well.
We will have two followups with Dr Frid from now until the end of this December, including one of them being in NYC. We will then see where we have to go from there for treatments. We will have to have more blood tests done when he is in NYC in December as well. On top of all this we will need to purchase a $5000 piece of machinery that will be put under Mykhailo as he sleeps. It will send of electromagnetic pulses through him as he sleeps, which will help in the process of ridding his body of this horrible disease.
We will also be organizing a shag style fundraiser on top of this gofundme campaign to help with expenses. This is going to be an extremely expensive process, and we appreciate all of the help you continue to give and have given already. Thank you all so much and thank you for sharing and helping us get his story out to so many others!
MYKHAILO's STORY: At age 4, on a family camping trip, Mykhailo had a tick embed itself into the back of his head. He had long hair and I couldn't see it as it became more and more engorged.
After I removed the tick a bullseye rash started within hours and we were advised by the nurses registry to take him to the hospital. It was there that an emerge doc said that it was a sign of Lyme disease. From then on out he developed the "flu-like" symptoms, and symptoms of extreme pain, headaches, nausea, oversensitivity to light and sound, neurological symptoms, mood swings, memory loss, difficulty with concentration, fevers, fatigue and many more, sometimes making Mykhailo bedridden or unable to function like his normal self.
For the past 4 years Mykhailo (8 years old now) has been treated by doctors, specialists, and naturopaths but has yet to have a treatment that worked or sometimes even a treatment at that. Unfortunately in Canada we do not have all of the proper testing to test for Lyme disease that the United States has. When Mykhailo had his blood tested it showed up negative and after that some specialists wouldn't even see or treat him. The problem with Lyme is that your test is not always positive, OR your test may not always show up as positive and the disease could also be dormant at the time. In the USA they have multiple tests to do to have more of a chance at getting the positive result and they also treat by symptom, which is needed due to this disease's ability to hide.
We are now in a situation we do not want to be in, where we are having to spend an unreal amount of money traveling to New York to see a Neuro and Lyme Specialist, Dr. Elena Frid, to have Mykhailo tested and treated there until he is able to get his referral into the Toronto Sick Kids Hospital (which has had a few bumps due to paperwork processes beyond our control).
We have developed this gofundme page for family, friends and others we don't even know who have been wanting to help out. I greatly appreciate the support we have already received and am unbelievably overwhelmed at the generosity everyone has shown so far on our Golf/BOGO card fundraiser as well. I had people I didn't even know that stepped up and sold tickets for us and I was absolutely blown away at how huge their hearts were and how much they cared for my child without even knowing him. Just so people know, we have raised somewhere between $1[phone redacted] with that fundraiser.
After crunching numbers for 4 trips to New York for appointments, accommodations, travel, food, and some testing we are at the $30,000 mark. THAT IS NOT INCLUDING TREATMENTS. We will adjust the goal amount up or down after we do our first or second trip and find out from the specialist how much the treatments and tests will be for sure, and we have an exact amount for how much our travel costs were.
We have been notified that Mykhailo's first appointment could be as early as next week or the first week of July so we have decided to get this page going as soon as possible.
In the future if we find that the treatments are going to be a much larger amount we will be looking into a benefit, but for now we will do what we can to fundraise and raise the funds through here.
Thank you so much for all of your help and generosity. Mykhailo has been suffering from his symptoms for too long and it is time to get him the help he needs before the symptoms progress more.
Medical Cost Breakdown [Flights, consultations, food, accommodations, taxi are all based on 4 appointments (initial consult, follow up to initial consult with a plan for going ahead, tests, then followup with treatment schedule) in NYC and the days/nights we would need to be there]:
*food, taxi, consultations, tests are all in USD and I convert them with the 1.36 CAD per 1 USD that we are at.
Food: $2000 USD (Avg $100/day for myself and Mykhailo for approximately 4 nights 5 days of travel and appointments days per trip)
$2000 USD x 1.36 =$2720 CAD
Taxi: Avg $100 USD per trip x 4 trips
$400 USD x 1.36 = $544 CAD
Consultations (appointments x 4):
$6000 USD x 1.36 = $8160 CAD
Tests/phone consults/medical management/correspondance with family physician/ research/ therapy recommendations FEES:
$7375 USD x 1.36 = $10,030
GRAND TOTAL: $28,810
We have rounded up the cost to $30,000 to cover any other fees, leave without pay for me to travel with my son (which affects rent, and bills, etc), and any other costs we will incur throughout this medical journey that I may have forgotten.
***These costs DO NOT include treatment costs, which we have heard can range from $10,000 - $30,000 USD per year. I will update amounts when we know costs for treatments.
Thank you again so much everyone! <3
- Anonymous Donor
- Tomislav Sapic
- Natalie Russo
- Chris O'Meara
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