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    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.

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NEW Source of Cheap Poo

Daffodil

Senior Member
Messages
5,875
DId the neck fusing do anything helpful? Or unhelpful? any effect at all?
no . i did c3-c6. 2 surgeons told me it could help, 2 said no. but as usual. i was desperate. i dont have problems from it yet but its only been a few months. i am sure i will have problems for the rest of my life from that decision. i cant imagine it will be that long before the adjacent joints will start failing... maybe they are already. i never had neck pain at all or even headaches. i know 3 others who had various neck surgeries in an attempt to try and get better but it did not work. all were long term patients, desperate.
 

Daffodil

Senior Member
Messages
5,875
I will say one thing.....it is REMOTELY possible that the neck surgery MAY have impacted my digestion/gut motility because i have normal flatulence now......BUT this could be my imagination too. and it hasnt done anything for my symptoms
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
no . i did c3-c6. 2 surgeons told me it could help, 2 said no. but as usual. i was desperate. i dont have problems from it yet but its only been a few months. i am sure i will have problems for the rest of my life from that decision. i cant imagine it will be that long before the adjacent joints will start failing... maybe they are already. i never had neck pain at all or even headaches. i know 3 others who had various neck surgeries in an attempt to try and get better but it did not work. all were long term patients, desperate.

If a person has ligament instability I would get it regardless because that is a problem. ME probably involves chronic viral infection and inflammation of the ligaments which is behind it. I'm not surprised that neck fusions aren't changing the underling major ME symptoms of fatigue and nerve hypersensitivity as these aren't known to be related to instability. The relationship between the POTS symptoms is useful though.
 

LINE

Senior Member
Messages
832
Location
USA
I tried probiotic that contained the following for a month, no effect: (Lactobacillus bulgaricus, Lactobacillus rtiamnosus, Lactobacillus sakei, Bifidobacterium bifidum, Bifidobacterium adolescentis ) 10 Billion CFU/g

Probiotics are a mixed bunch meaning there are a wide variety of organisms in each formula, although many contain the common lacto and bifidus strains. Kefir is one of the better ones and is quite affordable and should be able to find in your supermarket.

I am not sure where you live, but there is a product called Mutaflor that contains a beneficial form of e-coli (not the pathogenic strain), it is thought that this strain is dominant and that it provides a structure so other probiotics can thrive. Dr. Myhill has some information on this.

Plant fibers help cultivate good bacteria, thus serving as a prebiotic.
 

Daffodil

Senior Member
Messages
5,875
Probiotics are a mixed bunch meaning there are a wide variety of organisms in each formula, although many contain the common lacto and bifidus strains. Kefir is one of the better ones and is quite affordable and should be able to find in your supermarket.

I am not sure where you live, but there is a product called Mutaflor that contains a beneficial form of e-coli (not the pathogenic strain), it is thought that this strain is dominant and that it provides a structure so other probiotics can thrive. Dr. Myhill has some information on this.

Plant fibers help cultivate good bacteria, thus serving as a prebiotic.
yes i like what i have read by dr myhill albeit very little so far. mutaflor is talked about by so many people, it must help many. the powerful probiotics i have taken in the past - VSL and one other one - gave me diarrhea. Also, probiotics cant colonize....
 

Daffodil

Senior Member
Messages
5,875
If a person has ligament instability I would get it regardless because that is a problem. ME probably involves chronic viral infection and inflammation of the ligaments which is behind it. I'm not surprised that neck fusions aren't changing the underling major ME symptoms of fatigue and nerve hypersensitivity as these aren't known to be related to instability. The relationship between the POTS symptoms is useful though.
i agree. i think it is all about the neck/brain - gut axis. i think the instability in the neck compromises the vegas nerve somehow. and that this affects gut motlility. also, the bacteria or toxins or something are traveling along the vagus nerve to the brain. thats all i can piece together lol

the fusion i had was not craniocervical but lower down. the rowe study showed some patients recovering after similar fusions. i spoke to a woman who had that experience.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
I've been trying biokult for the last 2 weeks. Been feeling a lot more energised on that. But the solarray one I also take seems to increase inflamation. It's a tricky one to find the right probiotic.
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
i just spoke to the fellow who is shipping it. he says it works. you have to put in country and zip code correctly. apparently he ships worldwide
I contacted him on facebook, shipping to Ukraine is whopping 132USD. I noticed on his website the price of the FMT Kit went from 70$ to 47$ a few days ago. I guess I would buy it if I was confident this one-time investment would rule-out FMT forever, so I don’t have wonder anymore if it’s right for me.
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
By the way, if people want to test if this is safe, I’d gladly volunteer as guinea pig, if people share the cost of shipping...
 

pamojja

Senior Member
Messages
2,384
Location
Austria
I’d gladly volunteer as guinea pig

Don't think that would say anything about savety. It's as with probiotic, some will benefit, some not so much or even get worse. Its most probably influenced in what kind of equilibrium your gut microbiome already is in. Not 2 gut microbiomes could be equal.
 

Daffodil

Senior Member
Messages
5,875
I contacted him on facebook, shipping to Ukraine is whopping 132USD. I noticed on his website the price of the FMT Kit went from 70$ to 47$ a few days ago. I guess I would buy it if I was confident this one-time investment would rule-out FMT forever, so I don’t have wonder anymore if it’s right for me.
there are too many variables for a couple of syringes to rule out FMT. some people benefit from 1 or 2. some even go into remission from 1 or 2 FMT's but many needs months of it while many do not respond to 1 donor but do respond to another. some respond better to capsules, some to enemas, some to colonoscopies, some to a combination. some might respond with colonic preparation with vanco, lavage, addressing biofilm, etc while with some it might not matter. they just dont know enough yet. this is the absolute cheapest you can find FMT online, that is for sure.

even steve himself admits that the people who have tried it already (6) all benefitted but did not retain the benefits. he himself did some kind of fasting routine which he feels helped him retain the benefits but i think even he gives himself booster fmt's periodically...but i am not totally sure about this
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
even steve himself admits that the people who have tried it already (6) all benefitted but did not retain the benefits.
Well, he writes on his website that:
Due to new legislation coming into force on July 1st 2021, we will be unable to continue past that date unless $300,000 is paid for licensing and requirements.
So even if I do benefit, I won't be able to continue the treatment. This actually makes me laugh, because I always saw FMT as something unattainable for me due to complexity and cost. And even now, when FMT became the most attainable it has ever been, it's still not enough to be a viable treatment for me, just lmao...
 

Daffodil

Senior Member
Messages
5,875
Well, he writes on his website that:

So even if I do benefit, I won't be able to continue the treatment. This actually makes me laugh, because I always saw FMT as something unattainable for me due to complexity and cost. And even now, when FMT became the most attainable it has ever been, it's still not enough to be a viable treatment for me, just lmao...
yes that is partly why i am not ordering. i will need maybe 100+ treatments since i have been sick so long. i mean...i think so anyway. if you are desperate enough, why not find a local donor? that is what i did.

it is unattainable if you want to do it 100% safely maybe but as far as desperate measures go, it is probably the most attainable. its poo!
 

Hipsman

Senior Member
Messages
542
Location
Ukraine
it is unattainable if you want to do it 100% safely maybe but as far as desperate measures go, it is probably the most attainable. its poo!
If only it was so simple. From what I read: for FTM to even work, the donor needs to be healthy with no health conditions and no history of antibiotic use. If the donor is prone to overweight, you may make yourself prone to overweight too after FMT. Children aged 3-5 are the best (from what I read).

This requirements rules out everyone from my friends and family, trying to find someone online for this is sketchy, if you ask directly for donors, the person could just lie about their health/antibiotic use.

Building relationship with someone to just later ask for their poop is unorthodox to say the least, feels like a recipe for failure if you're trying to do this while being sick with ME/CFS.

Oh yea, I also heard that the donor needs to be on a special diet for it to work, no? don't remember the details thou.
 
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Daffodil

Senior Member
Messages
5,875
If only it was so simple. From what I read: for FTM to even work, the donor needs to be healthy with no health conditions and no history of antibiotic use. If the donor is prone to overweight, you may make yourself prone to overweight too after FMT. Children aged 3-5 are the best (from what I read).

This requirements rules out everyone from my friends and family, trying to find someone online for this is sketchy, if you ask directly for donors, the person could just lie about their health/antibiotic use.

Building relationship with someone to just later ask for their poop is unorthodox to say the least, feels like a recipe for failure if you're trying to do this while being sick with ME/CFS.

Oh yea, I also heard that the donor needs to be on a special diet for it to work, no? don't remember the details thou.
Well it took me 2 months of begging strangers on Facebook but I did manage to finally find a donor. The vast majority of people said no and blocked me. It was almost making me suicidal just looking for someone. I am not well enough to go out and put up posters or beg people at a gym or w/e.

As you said, I have no way of knowing if the donor is being honest or if he is going to give me dog's poop or worse. But in general, I have found people to be honest...which is why no one passed the questionnaire. I guess I will see how it goes. I had a few anxiety attacks over it for sure. But after 27 yrs of extreme inflammation (and i do mean extreme) how long can i stay alive anyway? I am one of the desperate.

I actually did run into some people who wanted to do it for free but none of them were healthy enough.

It is difficult because the healthiest people are also busy and typically dont need the small amount of extra money I can offer. Especially in the big city in which I live. They often have kids and full time careers and whatnot. Unfortunately, even people who are more likely to be healthy but still in need of money, like international students etc....were not comfortable with giving me their stool. I was rather surprised by this.

Did you say you were in Ukraine?
 
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Booble

Senior Member
Messages
1,397
I'm glad they are regulating it.
There is no way to know if this guy is legit or a snake poop salesman!
 

Booble

Senior Member
Messages
1,397
Well it took me 2 months of begging strangers on Facebook but I did manage to finally find a donor. The vast majority of people said no and blocked me. It was almost making me suicidal just looking for someone. I am not well enough to go out and put up posters or beg people at a gym or w/e.

As you said, I have no way of knowing if the donor is being honest or if he is going to give me dog's poop or worse. But in general, I have found people to be honest...which is why no one passed the questionnaire. I guess I will see how it goes. I had a few anxiety attacks over it for sure. But after 27 yrs of extreme inflammation (and i do mean extreme) how long can i stay alive anyway? I am one of the desperate.

So you are all set and no longer in need of the twins poops?

I hope you are going to be very careful. There is no way I would trust a random person on the Internet -- unless they were someone from here or someone I knew online for a long time, separate from the request.
 

Daffodil

Senior Member
Messages
5,875
So you are all set and no longer in need of the twins poops?

I hope you are going to be very careful. There is no way I would trust a random person on the Internet -- unless they were someone from here or someone I knew online for a long time, separate from the request.

I will PM:)