Not responding to Cyclo - Risking it all with Fecal Transplant on 2nd Of December

[Cekmsover]

Hi Guys,

Its been 4 months since posted. After getting the Diagnoses of pauci-immune crescentic glomerulonephritis in July I have had more drugs than I care to know.

I have had 4 x Cyclo IV, Mychophenolate, Meth Pred, Oral Pred, Bactrim, Somac etc.

Yet my CRP remains at 120 and my Polyarthritis remains almost unwalkable.

My kidney numbers are better but still smoldering with blood in the urine.

My specialists are not sure what to do. After doing some research and literally having enough of my body being torn to pieces with drugs, I have had clearance and support from the hospital to do a Fecal Transplant. This will be first in the world for Vasculitis on the 2nd of December, no evidnece, but either is trial 5 drugs at once when they barley work on their on which one dr suggested.

I have decided to put my life on the line in aid of research and if the roll of the dice pays off, a case study on pubmed that might help others. There comes a time after 5 grueling years that you say lets have the courage to try something different and not let this thing keep on taking your fighting spirit.

http://www.nytimes.com/2012/10/28/magazine/the-island-where-people-forget-to-die.html?pagewanted=all&_r=0

So I will keep you posted. I am in Aus and its been great to get support from Andrew. God bless that man for putting this entire forum together after what he went through.

C

[Pete]

Hope all goes well and get back on the way to good health.

[morningsunshine]

I'll be crossing my fingers and toes for you.

[mrtmeo]

Have you tried Rituxan?
Good luck and hope it works!

[mishb]

Wow, that's amazing and scary at the same time :sad:

Here is the link to it. Doctor Tom Borody claims faecal transplants curing incurable diseases like Crohn's - ABC News (Australian Broadcasting Corporation) (http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836)

Are you seeing this doctor?

[annekat]

Thanks for sharing this, I admire your courage for trying this, and I hope that it works wonders for you. Looking forward to your update.

[Debbie C]

OMG...so sorry you are going thru all this. I will pray it all goes well for you and please keep us posted on whats going on. Where do they come up with the names for all these diseases...can they get any longer !!! Good luck and stay strong :hug2:

[Ruotsi1]

What would the purpose of the fecal transplant be? I have heard of this procedure for Crohn's and c-diff colitis, but curious how it would benefit Wegs. What would you hope would come from this? (My intention is not for this question to be harsh...I am truly curious.) :)

[JeanMarie]

Good luck to you--I hope you've found the solution!!!

[Jayne 14]

God you must be right at the end of your tether , wishing you good luck & god speed
I'm praying your dice rolls a win & your future is long & pain free
Keep us posted .


Sent from my iPad using Tapatalk

[Pierre42]

Beyond anything else remember this: once you give up it's all over.

Sure it sound like "mumbo-jumbo" , but "the will to live" is very real, and makes a surprisingly real difference.

As bad bad as it gets (as bad as treatment can be) , being alive is better than the alternative - so fight for it with a passion.

also: personally I would not be surprised to see fecal transplant resolve your issues. Much research has recently shown an amazingly huge number of things come down to an imbalance in the gut bacteria (often due to poor aka "modern" diet).

Not surprising given that there's more bacteria (by weight) in a body than there are cells of "Pure you" cells.

"Everything you've ever believed is wrong, assume nothing, wing it and hope, at least you tried."

iI there's anything behind "the power of positive thinking" there'll be an "oomph" from all of us as you undergo treatment. :thumbsup:

[hrnn]

keep in mind also that although it didn't get the best results as a first choice therapy, infliximab seems to be a good alternative for refractory cases.

all the best!

[mrtmeo]

Please update when you get the fecal transplant.
The gut is 80% of our immune system and is linked to many AI diseases.

[morningsunshine]

Please update when you get the fecal transplant.
The gut is 80% of our immune system and is linked to many AI diseases.

Last week's New Yorker Magazine had a lengthy article about fecal transplants.
The Excrement Experiment (http://www.newyorker.com/magazine/2014/12/01/excrement-experiment)

It's definitely something I would consider eventually. I second the request for an update! All my fingers are crossed for you.

[mishb]

I hope all went well on Tuesday and you are ready to take on the world.

Our thoughts are with you

[John]

Thank you for being so brave. May God bless you and the dr's that are studying this. PLEASE keep us informed.
John

[mrtmeo]

Hi C,
I'm sure you will have to have many transplants til it starts working, but can you update on what and how you are doing.

[mishb]

Hey C,

I hope you are okay and things went well with the transplant.

Would really love to hear how things are :hug2:

[Cekmsover]

Hi Guys,
Christian here, well here is what happened with the Fecal Transplant.
1. I had the treatment as mentioned in the original thread - November 14
2. I needed to take antibiotics for two weeks prior, which made me even weaker / sicker
3. I arrived in Melbourne Australia, did the two day preparation (36 hours not eating), and collapsed upon arrival at the hospital, weighing a mere 56KG
4. I was told it would have either no reaction, and no harm in trying, or my CRP would sky rocket, guess what, my CRP doubled to 200
5. I was then distort and went home and was told by the kidney dr's my kidney numbers had gone off, and my creatinine had gone from 60 up to 450
6. I was admitted to hospital, and was put back on IV pred and didn't come out for three weeks.
7. To save the situation I was told to do Rituxan for the 5th time 4 x 1 week doses

At this point I thought I had really stuffed this up, and topped my kidney, but interestly:

1. After RTX Infusion 2 my creatinine went from 450 to 160 (Bang!) high fives and tears from the nurses, dr's and myself in the RAH
2. By the last RTX I was back to around 120 on creatine and CRP 20....ok remission but for how long, each time this happened on RTX before, my B cells would repopulate, I would relapsed after six months, start losing weight from the inflammation, and had to go back through the RTX or Cyclo treatment again and again.

Well this is what happened next:

That was now 4 years ago and I have never relapsed since, are on no drugs for the last three years, train 4 times per week, and are living a normal life as the CEO of an international company.

My personal hypothesis:

My nose was very bloody, and I had osteitis inside my nose bone which has a bit of a dip in the bone still. 7 days after the fecal I blew out what could only be called a small hard apple from my nose, which was years of hard dried / built up mucus, which was literally cutting off the blood supply to my bone. The fecal was such a strong antibiotic, that it knocked off this Staff infection (they tested it) and for me I feel this is what was the underlying cause of my WG syndrome. The Dr's said they will not ever really know, but they are kind of shocked (and happy) that I have not been back in their system for 4 years.

Guys I thought I would share this, because its never about gloating, I know all too well how fricking difficult this disease can make our lives, but I am pleased to say for the last 4 years I have had some really healthy days. I do have kidney scarring, but life is pretty much back to normal now.

I hope you are all going ok, and you are feeling supported and things are as best as they can be.

God Bless.

Cheers,
Christian

[Alysia]

Hi Guys,
Christian here, well here is what happened with the Fecal Transplant.
1. I had the treatment as mentioned in the original thread - November 14
2. I needed to take antibiotics for two weeks prior, which made me even weaker / sicker
3. I arrived in Melbourne Australia, did the two day preparation (36 hours not eating), and collapsed upon arrival at the hospital, weighing a mere 56KG
4. I was told it would have either no reaction, and no harm in trying, or my CRP would sky rocket, guess what, my CRP doubled to 200
5. I was then distort and went home and was told by the kidney dr's my kidney numbers had gone off, and my creatinine had gone from 60 up to 450
6. I was admitted to hospital, and was put back on IV pred and didn't come out for three weeks.
7. To save the situation I was told to do Rituxan for the 5th time 4 x 1 week doses

At this point I thought I had really stuffed this up, and topped my kidney, but interestly:

1. After RTX Infusion 2 my creatinine went from 450 to 160 (Bang!) high fives and tears from the nurses, dr's and myself in the RAH
2. By the last RTX I was back to around 120 on creatine and CRP 20....ok remission but for how long, each time this happened on RTX before, my B cells would repopulate, I would relapsed after six months, start losing weight from the inflammation, and had to go back through the RTX or Cyclo treatment again and again.

Well this is what happened next:

That was now 4 years ago and I have never relapsed since, are on no drugs for the last three years, train 4 times per week, and are living a normal life as the CEO of an international company.

My personal hypothesis:

My nose was very bloody, and I had osteitis inside my nose bone which has a bit of a dip in the bone still. 7 days after the fecal I blew out what could only be called a small hard apple from my nose, which was years of hard dried / built up mucus, which was literally cutting off the blood supply to my bone. The fecal was such a strong antibiotic, that it knocked off this Staff infection (they tested it) and for me I feel this is what was the underlying cause of my WG syndrome. The Dr's said they will not ever really know, but they are kind of shocked (and happy) that I have not been back in their system for 4 years.

Guys I thought I would share this, because its never about gloating, I know all too well how fricking difficult this disease can make our lives, but I am pleased to say for the last 4 years I have had some really healthy days. I do have kidney scarring, but life is pretty much back to normal now.

I hope you are all going ok, and you are feeling supported and things are as best as they can be.

God Bless.

Cheers,
Christian

Thank for the update, Christian. I hope I can ask, not sure I understand: was your good outcome after all, a result of the fecal transplant or of the rtx ? It seems to me from your description that the transplant almost killed you and that the rtx saved you ?

[Jaha]

I'm glad you are doing pretty well! I also appreciate the update, I wondered what happened with your transplant. I'm curious about which helped you the most, Rtx or the transplant? Take care of yourself!