Treatment with KDM miraculous so far, need help with dysbiosis though

[sam.d]

@knackers323 In Europe I believe in the coming months. KDM is telling patients by december 2019. Official language on the website of the manufacturer says somewhere in 2020.

 

[gbells]

Any tips on how to improve my flora?

What's your diet like?

 

[sam.d]

@gbells ultralow histamines, ultralow carb, ultra low-FODMAP. Yes I know, the worst possible diet for gut flora I'm trying hard though to add bits of histamines, carbs & FODMAPs!
Starting Bee Venom Therapy (BVT) soon, let's see if that helps!

 

[adelheid55]

Hi,
about Filgo... 2 weeks ago we were in Mechelen and he said " next year." In May he told us Filgo might be out this year.

 

[Thinktank]

Don't believe what KDM has to say about filgotinib. He will NOT be able to prescribe it to you, unless you are suffering from an illness which filgotinib has been approved for.
He's giving people false hope.

 

[tyson oberle]

Don't believe what KDM has to say about filgotinib. He will NOT be able to prescribe it to you, unless you are suffering from an illness which filgotinib has been approved for.
He's giving people false hope.

Will any doctor be able to prescribe filgotinib for ME/CFS? And do you think filgotinib might be helpful for us?

 

[sam.d]

@Thinktank @tyson oberle Yes it will be helpful and KDM has never said it will be refunded. Just full price 1000€ per month. At that price, any doctor can prescribe filgo to anyone.

 

[JES]

Don't believe what KDM has to say about filgotinib. He will NOT be able to prescribe it to you, unless you are suffering from an illness which filgotinib has been approved for.
He's giving people false hope.

Just wondering, have you not heard about the term off-label prescription?

 

[Thinktank]

Just wondering, have you not heard about the term off-label prescription?

Sure, but a medication must qualify to be allowed to be prescribed off-label. There must be a protocol or standard in place, which in this case there is none.
I also don't believe galapagos, the patent-holder for filgotinib will allow KDM to experiment with their new drug on patients who don't suffer from one of the indicated illnesses.

 

[sam.d]

@Thinktank Doctors can prescribe anything they want. I'm getting Gammanorm, which is only indicated for leukemia patients. Yet I pay full price (52€). Leukemia patients probably pay 3€ for it.

 

[Thinktank]

Will any doctor be able to prescribe filgotinib for ME/CFS? And do you think filgotinib might be helpful for us?

I don't know, i think it depends on the jurisdiction. I think some research must done first and protocols set before it's even allowed to prescribe a very powerful medication like filgotinib off-label.

 

[Thinktank]

@Thinktank Doctors can prescribe anything they want. I'm getting Gammanorm, which is only indicated for leukemia patients. Yet I pay full price (52€). Leukemia patients probably pay 3€ for it.

You're comparing apples and oranges. Leukemia is not the only indication for the medication, there are many and various protocols have been created.

 

[Thinktank]

You know what, i will write Galapagos about this issue. Who better than them to answer the question.

 

[sam.d]

@Thinktank please let us know the answer

 

[sam.d]

@Thinktank someone else emailed Galapagos and they replied august 2020 for launch.

 

[Hopeful2021]

Can't find this on my testresults but yes my immune system is severely degraded, lymfocytes very low. That why I've been on gammanorm (immunoglobulin mix) since the start of the treatment.

How are all your levels/symptoms/medications/lymfocytes now ?

 

[Hopeful2021]

@msf @tyson oberle @Hip
I'm starting to realize that low FODMAP is probably behind a lot of this. I've been eating a very low FODMAP diet for about 4 years straight now, because of my very bad SIBO. Should I start eating higher FODMAP - to improve my dysbiosis - and just deal with the SIBO symptoms? I've never talked to KDM about FODMAP actually.
But then again low FODMAP is something I overheard someone saying was their key to success with KDM's treatment...

all these catch 22's

Have the people in this thread taken a
PEG400 or other PEG type gut permeability tests? Thks

 

[msf]

Sorry, I didn't see the notification for this post.

@msf @tyson oberle @Hip
I'm starting to realize that low FODMAP is probably behind a lot of this. I've been eating a very low FODMAP diet for about 4 years straight now, because of my very bad SIBO. Should I start eating higher FODMAP - to improve my dysbiosis - and just deal with the SIBO symptoms? I've never talked to KDM about FODMAP actually.
But then again low FODMAP is something I overheard someone saying was their key to success with KDM's treatment...

all these catch 22's

I was probably the person that was saying low FODMAP was very effective in my case. I followed the elimination phase of the FODMAP diet for about a year, and then slowly added foods back in; this is what you are supposed to do with the FODMAP diet, just generally over a shorter timeframe. When I did this I found I could digest foods that I previously couldn't before. These days I do not follow a strict diet, although I try to avoid gluten as much as possible. I am sure that reducing the range of foods you eat changes your gut flora, but I think the most important thing is to ensure that the foods you are eating are actually being digested and are not causing too much inflammation.

 

[Hopeful2021]

@gbells ultralow histamines, ultralow carb, ultra low-FODMAP. Yes I know, the worst possible diet for gut flora I'm trying hard though to add bits of histamines, carbs & FODMAPs!
Starting Bee Venom Therapy (BVT) soon, let's see if that helps!

@gbells did you start the bee sting therapy? I had a friend recommend it