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About to start KDM treatment

trickthefox

Senior Member
Messages
212
Location
Brighton
Hi guys
im about to start treatment through kDM - I am lyme positive with markers of leaky gut and dysbiosis

the treatment is as follows

pulsed Clindamycin 1 week a month followed by vsl3 probiotics, b12 injections, mesalazine for gut inflamation, curcumin, LDN

I am really nervous as my health has stabalised after being bedbound and feeling like i was being tortured for 6 months last year. I'd like to know if anyone has followed a simmilar treatment and want to know what to expect?
 

Starlight

Senior Member
Messages
152
Hi Trickthefox. I'm afraid I can't help as I haven't started any regime yet but I've recently been diagnosed with Chlamydia Pnuemonia and in the same position as you, very nervous about what toll treatment might take.Mine will be continuous antibiotics. After many years bedridden I'm finally able to get downstairs, although no further than the couch, I'm,so afraid of messing it up. I hope you'll get some answers as I'd like to read them too. Good luck!
Do you mind if I ask where you buy the probiotics? I've been looking for them but can't find them outside the US. Will you take them with the antibiotic ?
 
Messages
2,125
I've recently been diagnosed with Chlamydia Pnuemonia and in the same position as you, very nervous about what toll treatment might take.Mine will be continuous antibiotics.
I tried this early on in my ME history. I've only recently been investigating all the medication I was previously given and one of the anti-biotics was ciprofloxacin one of a group called fluoroquinolones. These are very dangerous drugs. Please be sure and research whatever you're prescribed.
 
Messages
13,774
I'm wary about some of the KDM stuff I read about, and would encourage you to look critically at the evidence used to support treatment recommendations rather than just trusting that he knows what he's doing. Good to seek second opinions too. Good luck.
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
I tried this early on in my ME history. I've only recently been investigating all the medication I was previously given and one of the anti-biotics was ciprofloxacin one of a group called fluoroquinolones. These are very dangerous drugs. Please be sure and research whatever you're prescribed.

I would just like to add a bit of balance here as I have taken a few weekly courses of ciproflaxacin without any problems apart from a slight increase in GI symptoms but all antibiotics tend to do that with me.

Pam
 

trickthefox

Senior Member
Messages
212
Location
Brighton
I appriciate the info guys, i have done extensive research as always, i had my b12 injections today, no problem, not really sure if there was a difference, maybe i feel a bit more clear headed its hard to tell

turns out clindamycin is the best option for the bacteria I have based on the studies I've read, so im going to go forward with the course, managed to get VSL3 through my NHS doctor!

Has anyone been taking the mesalazine?
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I have been diagnosed with a Crohn's-like disease a few years ago and took mesalazine for it. It did help a bit with the inflammation. It's worth a shot imo.
 
Messages
14
Hello, I am new here. :) How is it going now trickthefox? I have an appointment with KDM in late May, but I am not completely sure about going.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
hi frujo i found the appointment invaluable beause it was KDM who diagnosed me with lyme, i am going back in april to see if any of the treatments have helped. The B vitamin injections have helped my energy,

However I am considering switching Drs to Dr Jemsek in washington who treats lyme. KDMs communication and staff just dont work for me. They might work for someone who doesnt want communication with their doctor once home, but for me i found it too difficult, they would take weeks to answer emails, never pick up the phone, and there was one point where i was left bedbound by the treatment, i didnt get through to KDM for weeks, then all he said on the phone was 'stop taking it' i told him id stopped, and he said 'good' the call lasted about a minute and they charged me 60 euros for the pleasure. Not meaning to completley badmouth it, as they do very comprehensive testing etc. and filled in a lot of blanks for me in temrs of what i should be treating, its just with my temerement i want a dr whos a little more on my case
 
Messages
14
I completely understand that you reacted on this! I also think it´s very annoying that they don't respond quicker.

I have now had a change of heart. I am instead going for Rituximab treatment in Norway. I am really unsure about long term treatment of abx and also about the lyme thread in general. I have still not checked for lyme with the Elispot test. I am really unsure what to think about it. Today there was a big Netherland study that concluded that long term abx didn´t help for lyme. There are so many studies on both sides!

Have you considered Rituximab?
 

ErdemX

Senior Member
Messages
113
Location
Istanbul
Hi frujo,

I'm also a patient of KDM for 6 months. His priority is the bacteria shift in the gut and usually wants to correct this before anything else. That is not only what he has been trying to do with me, also with many other recent patients that I speak to. I think first he wants to stop the immune system being overactive/aggressive by correcting the gut biome. So if you visit him, maybe you shouldn't expect to start a classic abx therapy for Lyme, even if he finds Borrelia in your labs. But also, this treatment is somewhat slow. He is open to suggestions, but not very open to a personal patient/doctor relationship.

What do you think about the potential dangers of Rituximab? I'm confused.. Do you know people who recently went that way, and how did they respond?

Please do inform us in the future :)