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Dr KDM rifaximin

mrmichaelfreedmen

Senior Member
Messages
156
Location
Australia
FYI its stem cell therapy, not a stem cell transplant, which is a dangerous and life threatening procedure done for types of cancers and recently with good results in MS patients.
from a blood test - I have Pseudomonas (aeruginosa and Putida), Citrobacter koseri, Hafnia alvei, Klebsiella pneumonia and Morganella morganii in my bloodstream, all IGM apart from one which si also IGA.

No more orals because my gut is messed up so badly (gut permeability causing translocation) that to put more antibitoics straight into the gut would be a bad idea. I need to do IV abx for my Lyme and co.

Thanks @justy. I also have severe gut permeability, were these blood lnfections or translocations picked up by test KDM ordered?

Does KDM still visit Melbourne Australia?

*apologies a little off topic
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Glutamine powder mixes with stomach acids and creates amines. EC glutamine is the only way to go.

Your symptoms sound more like lower gut dysfunction/dysbiosis, hence no positive breath test results.

I'd do the rifaximin bro if I were you, it should do well.

EC glutamine? can you elaborate? not heard of this

What I'm confused about if its not an upper gut/stomach sibo is why my symptoms come on about 10 minutes after eating, I'm hit with very hard fatigue/puffy face/brain fog, my CD14 was high, do you think this is bacterial or more a mast cell thing? also when I take antibacterials (i have tried dioxychlor similar to MMS) then I get die off instantly, its a different feeling to food reactions as I feel heavy, but then the day after dioxychlor, my symptoms are much more tolerable, the reason I'm scared to sticking to it is chlorine dioxide will basically kill all anaerobes in the gut
 
Messages
17
EC glutamine? can you elaborate? not heard of this

What I'm confused about if its not an upper gut/stomach sibo is why my symptoms come on about 10 minutes after eating, I'm hit with very hard fatigue/puffy face/brain fog, my CD14 was high, do you think this is bacterial or more a mast cell thing? also when I take antibacterials (i have tried dioxychlor similar to MMS) then I get die off instantly, its a different feeling to food reactions as I feel heavy, but then the day after dioxychlor, my symptoms are much more tolerable, the reason I'm scared to sticking to it is chlorine dioxide will basically kill all anaerobes in the gut

I tried CDS which is similar to dioxychlor and felt ok for about 5 days of taking it and then the reverse happened and back to the dreaded symptoms that come with treatments I've tried. I too get very quick reactions, 10 minutes is about right. I wonder if its something like eosinophilic esophagitis (reaction taking place in the esophagus)?
 

PDXhausted

Senior Member
Messages
258
Location
NW US
I have SIBO-C, I had a lot of bloating and gurgling in my terminal ileum in addition to upper gut problems. I did two rounds of Rifaximin, each two weeks, along with oregano oil. The first round didn't completely get rid of it but by the end of the second round afterward, the bloating in my ileum was gone, I was back to normal bowel movements and most of my upper gut problems were gone.

That was several months ago, I still have some residual burping and have just started a 3rd round of Rifaximin. This round has been a lot harder to get started on for some reason.

For me I felt I needed the oregano oil along with it to help all that was going on, but my issues might be different than other people's.

Also, I didn't seem to have any bad side effects from the Rifaximin, but I think it probably does kill off some good bacteria as well. I have a harder time digesting beef since taking it. I'm hoping once I get the sibo under control I can go back to more probiotics and try to rebuild my microbiome.
 

Gingergrrl

Senior Member
Messages
16,171
I also had a bad reaction to Curcumin (oral)

@justy What was your reaction to the Curcumin? I have many people recommending that I try it again but am very hesitant (and this thread has now made me even more hesitant!) and doubt I will try it. When I tried it last summer, it didn't go well.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
I have SIBO-C, I had a lot of bloating and gurgling in my terminal ileum in addition to upper gut problems. I did two rounds of Rifaximin, each two weeks, along with oregano oil. The first round didn't completely get rid of it but by the end of the second round afterward, the bloating in my ileum was gone, I was back to normal bowel movements and most of my upper gut problems were gone.

That was several months ago, I still have some residual burping and have just started a 3rd round of Rifaximin. This round has been a lot harder to get started on for some reason.

For me I felt I needed the oregano oil along with it to help all that was going on, but my issues might be different than other people's.

Also, I didn't seem to have any bad side effects from the Rifaximin, but I think it probably does kill off some good bacteria as well. I have a harder time digesting beef since taking it. I'm hoping once I get the sibo under control I can go back to more probiotics and try to rebuild my microbiome.

Thats really interesting man! I've tried oregano in the past but it puts me on my ass big time! I'm leaning towards the rifaximin, will talk to my stem cell doc about it and see if there are any contradictions, i read a few papers where it says rifaximin is more of a micro biome regulator rather than annihilator like some antibiotics, and flora like acidophilus increase while on it!
 

trickthefox

Senior Member
Messages
212
Location
Brighton
All i know is my digestive problems got about 100 times worse after i took the triple antibiotics for blastohominis, seems it nuked some good flora and left me worse off, even though the parasite was gone
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
How did you get on with the rifaximin?

Very well once I started pulsing - I had a little more fatigue and joint pain and it was thought I was herxing (Lyme in the digestive tract). Brain fog has been better since stopping the course. I think its a pretty gpood abx for gut stuff its not really absorbed systemically. Ive had a little candida flare, but not systemically like I had in the past o that's good so far! What probiotic will you take? do you have histamine issues? as I have MCAS the probiotic element was hard to sort out - reacted badly to all those mentioned as they had histamine raising strains so I went for D Lactate Free Custom Probiotics - no issues with a baby dose of this and it helps my nightitme itching as it has histamine lowering strains.

Do you mean in Los Angeles or Louisiana or somewhere else? What are they called? Am sorry again, I know I have missed the beginning parts of your journey.

I think its Infusio clinic in Los Angeles.

were these blood lnfections or translocations picked up by test KDM ordered?
from serum test ordered by KDM - so blood.

do you think this is bacterial or more a mast cell thing?

The fats reaction time could point to mast cell - I thought you did have histamine issues? also the recent ANA could point in that direction...do you take anything for this?

@justy What was your reaction to the Curcumin? I have many people recommending that I try it again but am very hesitant (and this thread has now made me even more hesitant!) and doubt I will try it. When I tried it last summer, it didn't go well.

I had a reaction a couple of hours after taking it and it was a severe GI reaction - SEVERE stomach pain, then running to the loo for a few hours. I have had this on and off in my life and only now realise this is a mast cell reaction in the GI tract. Its a shame because it reduces inflammation, but I wouldn't try it again - a lot of people in the mast groups do ok with it. I have big issues with sulphur - don't know if it is to do with this?
 

trickthefox

Senior Member
Messages
212
Location
Brighton
The funny thing is I have zero other histamine symptoms which is why my stem cell doc doesn't think its mast cell, no flushing, itching, or pain, just severe brain fog and fatigue and a poisoned from within kinda feeling
 

digital dog

Senior Member
Messages
646
I think the NHS test is adequate. My levels were out of range but the doctor didnt seem too fussed. I have problems with my liver and have never been able to tolerate any of the supplements or food that are meant to be beneficial for helping it. I'm a bit of an anomoly as I do worse eating healthy food (fish, flax, nuts, coconut, eggs etc).

I only asked about the liver because if yours wasn't working correctly the fatigue etc you experience could be a result of that.

On a separate note, have you tried acupuncture? I'm not convinced about it but wondered what your views are. I'm giving it a go but have low expectations. I know that a good practitioner can zone in on a particular organ and focus on that. It's probably a complete waste of my money but I only try low-risk things now and acupuncture ticks that (very small) box.

Ignore me if I'm completely out of line here but could you still be experiencing damage from the antibiotics you previously took? I know it can take a long time to recover from the effects of certain antibiotics (not just the quinilones) and I worry a little that you havent given your body/brain time to recover before trying more antibiotics. Probably completely unfounded, just a thought.

I'll keep my fingers crossed for you regarding the stem cell therapy.
 

Justin30

Senior Member
Messages
1,065
ive met a few online who have got better through other modalities like antibiotics and rife, but in real life i've met 7 people now who recovered through stem cell treatment, pretty significant I think!

Hi,

Just wondering in your travels with those you met who are much better after stem cells for lyme did you meet any that had ME/CFS that were substantially better or recovered from stem cells?

It would be appreciated if you have any info.
 

Kati

Patient in training
Messages
5,497
I am sorry to say but...

I have looked up the Infusio website, and the stem cells autologous 'transplantation' look very snake oil to me. They do not seem to be saying exactly what they are doing from the time they collect the cell to the time they reinfuse the cells back in the body. It looks like there is plenty of 'rest and visit', take care of the soul and that kind of stuff, but what on earth are they doing and how much money are they stealing for putting your stem cells in the freezer for a week and offering you the spa treatment in the meantime?

As a chemotherapy nurse that worked in bone marrow transplant for about 5 years, I have seen what stems cell do after compete suppression of the bone marrow, rendering the patient susceptible to all kinds of infection. In this case, the stem cells which are reinfused act as rescue.

It seems like Infusio is more interested in providing the patients with the ultimate spa experience, without providing proof of exactly what they are doing on the scientific side of things.

Dr Paul Cheney has taken patients down to Costa Rica for stem cell therapy- none of the patients were cured from that, but they were alleviated of 20,000$ USD each time they went, and some went more than once.

Be careful out there.
 
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Justin30

Senior Member
Messages
1,065
I agree with @Kati the lack of scientific back up and having family members children pass after the treatment because of how harsh it i, is real.

I have read and listened to many lecture on stem cells and feel this area is lacking funding but may be the answer to these crazy chronic diseases that cause damage. This is just another example of underfunded medicine that I feel could help many. The researchers keep saying they lack funding and I believe this to be true on regards to stem cells.

That being said Chenney did bring patients down with limited success but I believe it worked in 2 younger sufferers but that does not warrant effective if the 40 others didnt have success.

What to me seems to need to be developed in the way of these stem cells is neural stem cells that deal with encephalopathy or encephlomylietis as this area cause damage and my thoughts on a subset of us is that we have this damage and need a repair mechanism.

This is where neurnal stem cells come into play but from what I understand and from what Kati says is there is a huge risk. One that is not diacussed.

Further these ASC stem cells are much different. Nothing like neurnal or other types.

I like the idea of what they did in MS wipe out the immune system and replenish with stem cells. Dangerous procedure but in sick people with very poor QOL what do u have to loose.

Just my thoughts.
 

Kati

Patient in training
Messages
5,497
I agree with @Kati the lack of scientific back up and having family members children pass after the treatment because of how harsh it i, is real.

I have read and listened to many lecture on stem cells and feel this area is lacking funding but may be the answer to these crazy chronic diseases that cause damage. This is just another example of underfunded medicine that I feel could help many. The researchers keep saying they lack funding and I believe this to be true on regards to stem cells.

That being said Chenney did bring patients down with limited success but I believe it worked in 2 younger sufferers but that does not warrant effective if the 40 others didnt have success.

What to me seems to need to be developed in the way of these stem cells is neural stem cells that deal with encephalopathy or encephlomylietis as this area cause damage and my thoughts on a subset of us is that we have this damage and need a repair mechanism.

This is where neurnal stem cells come into play but from what I understand and from what Kati says is there is a huge risk. One that is not diacussed.

Further these ASC stem cells are much different. Nothing like neurnal or other types.

I like the idea of what they did in MS wipe out the immune system and replenish with stem cells. Dangerous procedure but in sick people with very poor QOL what do u have to loose.

Just my thoughts.
Hi Justin, stem cell transplant is one ball park- where chemo is used to wipe out all immune cells- the risks presented are huge, and are many time higher when someone else's stem cells are used. These are performed for patients who have no other choice, and it is last resort.

Here though, we are not even sure what we are talking about. The way this 'institute' for lack of better words present things is. 'We will take your stem cells, we will give you vitamins, and IV every day, and in 10 days time, we give you your stems cells back' that doesn't make sense.

Are the stem cells altered to fight infection better? Is the body's immune system wiped put before reinfusing the stem cells? I don't think so. So what exactly is the treatment, and how is it possible that a treatment like that would allegedly eradicate Lyme, but not used in mainstream medicine? Is this scientifically based (backed by clinical trials) and is it FDA approved? It simply doesn't make sense.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Here though, we are not even sure what we are talking about. The way this 'institute' for lack of better words present things is. 'We will take your stem cells, we will give you vitamins, and IV every day, and in 10 days time, we give you your stems cells back' that doesn't make sense.

Not offering any opinion here ('cos I don't understand the issues, though I'm interested) but if I'm looking at the right website they offer a little more:

Our procedure is as follows: After preparing the immune system, we perform a large blood draw (usually about 300cc) from which we harvest stem cells. These are sorted and checked for quality, after which they are incubated with cytokines to stimulate replication. After approximately seven days we have enough stem cells for implantation. These are usually injected subcutaneously into the lymphatic system. They can also be applied to a specific area.

Is 'incubated with cytokines to stimulate replication' a thing?

from: http://en.infusio.org/medical/stem-cell-therapy
 

Kati

Patient in training
Messages
5,497
Not offering any opinion here ('cos I don't understand the issues, though I'm interested) but if I'm looking at the right website they offer a little more:



Is 'incubated with cytokines to stimulate replication' a thing?

from: http://en.infusio.org/medical/stem-cell-therapy
The thing is, in order to harvest stem cells, you have to stimulate the bone marrow to make more. Only then you get a good harvesting.

'Preparing the immune system' is insanely vague.

Incubating with cytokines is an in vitro process.
 

Gingergrrl

Senior Member
Messages
16,171
I have to agree with @Kati on this one and the Infusio Clinic seems like snake oil to me. It is fairly close to where I live so I checked out the website wanting it to be legit but it just doesn't appear to be (and I am generally pretty open to outside of the box ideas.)