• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

sam.d

Senior Member
Messages
106
Hey guys,

Last year I started treatment with KDM, as recommended by people on here.
So far it has been nothing short of miraculous. I went from near totally bed-ridden and almost not being able to speak anymore, to practically being my normal self again (mentally), being up and about in the house all day (not a minute in bed during the day), and being able to do volunteer work 7 days a week (from home) with virtually full mental capacity and zero brain-fog. Truly, a night and day difference. Friends and family say they almost couldn't recognize me anymore at my deepest point a year ago, and that now they almost can't tell the difference from when I was in full health.

In my last consultation I got blood results with improved inflammatory-markers across the board.
However, my gut flora has worsened and I am still suffering from severe intestinal issues.
These are my gut flora results
U8v4JLw.jpg


I'm especially worried about my severly low Bifidobacterium numbers, as I have read that that is a causal factor in colorectal cancer.

Any tips on how to improve my flora?
Thanks!
Sam
 
Last edited:

sam.d

Senior Member
Messages
106
@perrier
I am on
  • 1 subcutaneous injection Gammanorm 165mg/ml, 6ml/week
  • Normix 200mg for 15 days, then Mutaflor 15 days (repeat every month like this)
  • 2 x vit B12 injections/week
  • Lactoferrin 2 caps/day
  • Samento/Banderol/Cumanda protocol
  • Telfast 180mg 1 capsule/day
  • Choline-DHA 2 caps/day
  • Oxygen machine 4 liters/minute, 5 hours a day
  • minimum 2 liters of water daily
 

sb4

Senior Member
Messages
1,654
Location
United Kingdom
@perrier
I am on
  • 1 subcutaneous injection Gammanorm 165mg/ml, 6ml/week
  • Normix 200mg for 15 days, then Mutaflor 15 days (repeat every month like this)
  • 2 x vit B12 injections/week
  • Lactoferrin 2 caps/day
  • Samento/Banderol/Cumanda protocol
  • Telfast 180mg 1 capsule/day
  • Choline-DHA 2 caps/day
  • Oxygen machine 4 liters/minute, 5 hours a day
  • minimum 2 liters of water daily
Great to hear this is working out for you. So this is the protocol you where put on by KDM?
 

unicorn7

Senior Member
Messages
180
Great to hear! I have the same experience of getting a lot better in half a year, we stopped the medications and I was too enthusiastic, did too much and had an enormous crash. My one tip is: don't overdo it:D be extremely happy with the progress you have.

I also have practically zero bifidobacteria, but my problem is very high Clostridium. I see you have high streptococcus. I'm curious, did you have high D-lactic acid?
 

unicorn7

Senior Member
Messages
180
@unicorn7 wow, thanks for that! I'll make sure I do that. :D
We only measured D-lactate at the very beginning and it was in the normal range then for me.

Ok, I thought streptococcus was linked with D-lactic acid, but maybe not always.
Are your inflammatory markers all in normal range at the moment?

What is the oxygen machine? What is it for?
 

perrier

Senior Member
Messages
1,254
@perrier
I am on
  • 1 subcutaneous injection Gammanorm 165mg/ml, 6ml/week
  • Normix 200mg for 15 days, then Mutaflor 15 days (repeat every month like this)
  • 2 x vit B12 injections/week
  • Lactoferrin 2 caps/day
  • Samento/Banderol/Cumanda protocol
  • Telfast 180mg 1 capsule/day
  • Choline-DHA 2 caps/day
  • Oxygen machine 4 liters/minute, 5 hours a day
  • minimum 2 liters of water daily
Thank you for these specific details; all I can say is that you are very strong, in order to endure all this. This is not an easy protocol. Just doing oxygen for 5 hrs a day, and at 4 litres is challenging. Is he giving Samento, etc because he thinks you have lyme? Congratulations on your hard work and being to endure all this.
 

Daffodil

Senior Member
Messages
5,875
@sam.d other than KDM's suggestions, I am not sure how else to fix dysbiosis. how long were you sick before you saw KDM?

how did your illness start?

there are fecal transplants but may be a little dangerous according to KDM
 

Hip

Senior Member
Messages
17,824
  • 1 subcutaneous injection Gammanorm 165mg/ml, 6ml/week
  • Normix 200mg for 15 days, then Mutaflor 15 days (repeat every month like this)
  • 2 x vit B12 injections/week
  • Lactoferrin 2 caps/day
  • Samento/Banderol/Cumanda protocol
  • Telfast 180mg 1 capsule/day
  • Choline-DHA 2 caps/day
  • Oxygen machine 4 liters/minute, 5 hours a day
  • minimum 2 liters of water daily

sam.d do you have any sense of which of those treatments may be helping the most?
 

tyson oberle

Senior Member
Messages
210
Location
tampa, florida
In my last consultation I got blood results with improved inflammatory-markers across the board.
However, my gut flora has worsened and I am still suffering from severe intestinal issues.
These are my gut flora results
I don't understand. How can your gut flora be worse, but your improvement has been "miraculous"? Maybe high streptococcus isn't bad? But you say that you are "still suffering from severe intestinal issues"; so is it because you and/or KDM are referring to your (second?) lab results or is it because you have bloating, constipation, or some other intestinal symptoms still? What did KDM diagnose you with your first lab results? I am also curious as @Daffodil is on how long have you been sick and how do you think your illness started?
 

sam.d

Senior Member
Messages
106
@sam.d Congratulations on a great improvement. My experience is that the gut can be very difficult to improve but probably not impossible.

Can you tell me what dose of lactoferrin you are taking as I have just started that to see if it will help to transport iron into the cells as I had bottom of the range for transferrin.

Thanks

Pam

Hey Pam, I'm taking 2 caps per day of https://www.kalidashop.com/lactoferrin-complex.html
 

sam.d

Senior Member
Messages
106
Ok, I thought streptococcus was linked with D-lactic acid, but maybe not always.
Are your inflammatory markers all in normal range at the moment?

What is the oxygen machine? What is it for?

Certainly not in the normal range yet!
The oxygen machine is because KDM found that my red blood cells desaturate upon physical exertion.
I've probably had chronic Lyme's since the late 80s. So my body was in such an advanced stage of the illness that I had cellular hypoxia. Too little oxygen in my body. I was on the machine for 3 weeks (without any other item from the list) and I was suddenly able to wake up an hour earlier and go to bed an hour later.
 

sam.d

Senior Member
Messages
106
Thank you for these specific details; all I can say is that you are very strong, in order to endure all this. This is not an easy protocol. Just doing oxygen for 5 hrs a day, and at 4 litres is challenging. Is he giving Samento, etc because he thinks you have lyme? Congratulations on your hard work and being to endure all this.

Thanks perrier,
I appreciate it :)
It's definitely not easy. The gammanorm injection is painful too.
But hey what else am I going to do. Gotta move forward and try and beat this thing :redface:
 

sam.d

Senior Member
Messages
106
@sam.d other than KDM's suggestions, I am not sure how else to fix dysbiosis. how long were you sick before you saw KDM?

how did your illness start?

there are fecal transplants but may be a little dangerous according to KDM

Yep I'm definitely going to stay away from transplants.
The going theory is that I was infected with some Borrelia residu after receiving many blood transfusions in a dodgy hospital back in 1987. That's when my symptoms started.
 

sam.d

Senior Member
Messages
106
sam.d do you have any sense of which of those treatments may be helping the most?

- I've tried stopping Gammanorm → got worse
- When I'm on Normix → peak brain clarity and much less SIBO symptoms
- On the days that I'm scheduled to pause both Samento and Banderol → brain fog/scrambled thoughts creep back in
- Telfast makes me wake up an additional hour earlier and gives me an hour extra at night as well.
- When I stop taking choline-DHA → stomach issues get worse
- oxygen machine as I said earlier → extra 2 hours in a day

so yeah I think everything contributes a little,
but I would say each Normix phase is quite powerful. Although the contrast with the off-phase has been getting smaller as the treatment goes on.
 

sam.d

Senior Member
Messages
106
I don't understand. How can your gut flora be worse, but your improvement has been "miraculous"? Maybe high streptococcus isn't bad? But you say that you are "still suffering from severe intestinal issues"; so is it because you and/or KDM are referring to your (second?) lab results or is it because you have bloating, constipation, or some other intestinal symptoms still? What did KDM diagnose you with your first lab results? I am also curious as @Daffodil is on how long have you been sick and how do you think your illness started?

Well yes, paradoxically I have much better energy, mood and mental clarity, which has literally brought me back from the dead. On the other hand, my gut flora results got worse. I have high-acid stomach problems now, which I didn't have before. I still have severe constipation and I can eat less now than a year ago. There's only about 5 vegetables that I can eat, 2 types of fish. I can't digest meat, and I eat zero carbs or my symptoms flare up. So zero potatoes, pasta, bread, you name it... Since last week, my IBS/SIBO/acid-issues even start to be triggered by eating pumpkins. The only high-carb vegetable I was still eating. I told KDM that at this rate, I'll be eating ONLY cucumbers by next month :)

And yes I have severe bloating: 5 month pregant belly at all times
 
Last edited:

sam.d

Senior Member
Messages
106
For the record: I'm aware that a low-carb diet triggers a decrease in bifidobacterium.
But I just can't handle carbs because of SIBO and stomach issues. It's a real catch 22