Treatment For John St Julien
The whole story of John's illness so far... ( If you know it, go down to the 5 stage plan to know how we are going to get our John back on his feet!)
As most of you know John started our charity in Tanzania named ShareTanzania by himself back in 2014. It has helped thousands of children into education, many of which who were in child labour and very difficult life conditions. He also built Featherstale Children's Village, which is the home to over 60 disabled children who were in crisis, and indeed ShareTanzania is now the guardian to over 100 children and 70 rescue dogs! Whilst there John has become increasingly ill over the last years, and now he is fighting desperately to stay well after a tick bite has taken most of his physical abilities. To recover and continue all he, and now we do in Tanzania John now needs urgent specialist treatment in Germany. As he, and we did this all as volunteers, we are in need of of help with that treatment.
John has been fighting Lyme Disease, Babesiosis and suspected undiagnosed infections that can accompany them for some time now.
John has actually been sick since I met him, in 2014, but he just kept putting it down to being in Tanzania, under stress and working too much.
He did seek help in Tanzania, but never felt he could take time to leave the children and have better investigations done in Europe.
In October 2017 after his last ever run, John's body shut down, and he could not get out of bed for 2 weeks.
We were finally diagnosed after John spent weeks unable to walk in January 2018 and we flew to England. They found Babesia. In Germany, in April he again became desperately ill, and specialist found Lyme.
In June, John's heart swelled due to the die-off from the medications, he was rushed to hospital by friends, to discover he had just 3% heart function left before failure. John was airlifted to Kenya, where he spent 7 days on the cardiac ward, I had to fly in with Azlan who was just weeks old.
It was thanks to online support we could cover the costs of air ambulances, family coming to support us, and eventually further treatment in Germany.
John spent much of that year in and out of bed until we left for a specialist intensive treatment in Hamburg. Apheresis and antibiotic therapy. It helped John a lot, and a discovery was made that he had 20X the toxic level of cobalt in his bloodstream, and 2 x the toxic level of arsenic.
The apheresis removed much of it. John felt good, returned to Tanzania in January 2019, and after just 7 days of working and likely doing too much, he has been bedridden since.
During that time, a PICC line was inserted from John's arm to his central vein near his heart. Daily we give him infusions to bring down swelling, boost his body with vitamins and minerals, and of course kill the bacteria. This has cost $5000.00 a month, the line is still in and of great help.
Now John is so weak, as many of you will know from the footage. He has begun to have convulsions, seizures and constant heart and breathing issues. On occassion, we have thought John had a stroke in fact, as his speech became slurred after the convulsions.
Now after developing shingles, John had to stop the other treatments for 5 weeks which has cost him dearly. John is just too weak to go on fighting this way, and urgent specialist care is needed, without it, we naturally fear the worst.
What we need to do now...
Thankfully by a miracle, I have managed to speak to Germany's leading microbiologist on Borrelia or Lyme. He does not treat people but educates Dr's and researches Borrelia, or Lyme for a living.
We have a plan which will go in stages.
We do not need to fund it all at once, as some of the treatment can't take place until the others have and John regains strength, so we are hoping and praying we can do this!
Stage 1: John needs to fly to Hamburg (Once he is able and stable and we have strengthened him for the journey.) There he will be admitted to the tropical disease hospital. It is said to be the best in Germany.
Here complete investigations will begin again, to ensure no pathogens have been missed in the initial investigations from last year. This will include neurological investigations as John's brain seems to be struggling with controlling breathing and heartrate etc...
To do this John needs a flight where he can lay flat, we do not know if he will need a Dr yet on the flight, but have some we can ask if so. His post orthostatic tachycardia means his heart rate increases to 3 times its normal level upon standing, and a little under that when sitting too long. So we need a business class flight for him, with a bed. If anyone has airmiles they can share we could maybe use those? The fastest flight is KLM from Kilimanjaro international.
Cost without flight for John: $3000.00 (£2500.00)
Cost with flight for John: $6000.00/8000.00 (£4950.00/£6500.00) if we can get a cheap business class seat it will be less.
Stage 2: Hyperthermia treatment- Once John has been seen and investigations are over at tropical diseases, the next stage will be a Hyperthermia treatment. John will first need to clear anything that might hinder this treatment, and get strong for it too. The treatment is intense, and a full bill of health on his organ function is done before it begins. This is a new pioneering treatment for Lyme, that is normally used for cancer patients. The best hospital in Germany for this is called St George Clinic. We already have an invoice for this, it alone for 3 weeks, is $18,500.00 (£15,200.00)
Cost for Hyperthermia: $18,500.00 (£15,200.00)
Stage 3: Apheresis and blood washing to remove all toxins and remaining poisons-
The Dr who did John's blood cleansing is now a friend of ours, and as he believes in the work John does, has so kindly offered ALL treatments for this at cost price, meaning the nurses needed, himself and their time is free. For such a highly in demand practice and Dr, this is truly amazing. Meaning we must only pay for the equipment, filters for the machine and drugs etc... The filters are however expensive and made only by one place in Switzerland.
5 Sessions on Apheresis will be $1680.00 each instead of $2,241.00 each.
Total cost $8400.00 (£6900.00)
Stage 4: Stem Cell therapy- Once John has recovered from this, his body, immune system and cells need to repair. Lyme destroys the mitochondria and is an intracellular bacteria. The most up to date and successful way for this is Stem cell therapy. Thousands of Lyme sufferers return to their ability to walk, live and move freely with the therapy. In fact in all the support groups John is in, it seems this is the thing that gives the lucky ones who can get the money together for treatment, their old lives back.
Stem cells will be taken from John, and then grown in a lab to be perfectly healthy. They will then be implanted back into John, and begin their work rebuilding his broken and traumatised system.
The whole thing takes 4 weeks at a specialised clinic.
There are a few we are looking at, the one we have an invoice for is called Infusio in Germany.
However, the invoice is an approximation, as they must calculate it based on the condition John is in before he goes.
This means it could be cheaper if anything, and the said not much higher if it is. Quote "A preliminary cost estimate is sent to patient based on
the information received and the therapy plan issued by the doctors. Any additional costs
can only be determined after a medical evaluation."
Cost $9000.00/12,000.00 (£7400.00/£9900.00)
Stage 1 and 2 are of course our top priority now, and the others we have time to fundraise for. Stem cell therapy likely can't take place until mid-2020 once John gets through everything else. For all this will be helping him, it will be a tiring fight, and he needs time to rest in between each stage.
John keeps saying there is a Stage 5...
Stage 5: We get our John back, and he climbs Mt Kilimanjaro to prove it :) x
Throughout all of this we will be using what we can from our Patreon, and family and friends etc, we will be sure to make this totally clear on the goal. There will be daily living costs in Germany, Air BnBs etc and transport, and we aim to cover that with our Patreon earnings.
We will say, any friends who are in a position to offer a loan even, we would pay that back from our Patreon, so don't be afraid to ask. We can't get one sadly, as Patreon and no work earnings for so long, doesn't sit well with banks, at all, we tried.
From the bottom of my, and our hearts... thank you for anything you can do to help John get his life back, or the way things are going, perhaps even extend it.
We have much faith in life as you know, and John is certain however it will come, God will make away, and this is just a bump in the road...
I suggest we all adopt his mindset, and his unwavering faith, and wait and see just now he will do that...
We love you all,
The St Julien Family x
