Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Bacteriophage therapy (phage therapy) for gut infections / dysbiosis — just $30 instead of $1200

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Hip, Nov 13, 2015.

  1. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    The amount of common/popular knowledge/advice on probiotics is woefully poor/inaccurate (see this guide). Even less is known about phages. I am highly skeptical about any claim that "current phage products only target e.coli, which will harm CFS patients".

    For example, I've seen a number of products recommended for CFS patients that have harmed me and others. And other recommendations which were completely useless. There is significant variation from person to person, and current knowledge about the gut microbiome is extremely juvenile.

    Ah, as a matter of fact, some of the recommendations I mention came from that cfsremission.com site. Though I have nothing against that site, I'm sure they're doing their best.

    This website that he cites as proof https://www.toxinless.com/bacteriophages is only hearsay, with no links to studies/evidence.

    Make sure to also check the comments on that cfsremission post. I want to comment there but I see no way to do so. Maybe he locked the comment section.

    I've tried this very similar product to the one he mentions: https://www.amazon.com/gp/product/B01NAE7J7B and it harmed me. However, I've tried just the phages in a few different brand products and they all helped me.
     
    Last edited: Jul 14, 2017
    cigana likes this.
  2. Daffodil

    Daffodil Senior Member

    Messages:
    5,072
    Likes:
    4,956
    @MaximilianKohler i spoke with my specialist about phages. he said too little is known about them right now so it would not be a good idea to use them
     
  3. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    Yeah, not surprising to hear. Unfortunately since there is no established cure for our condition some of us take risks based off the best available current knowledge.
     
  4. Daffodil

    Daffodil Senior Member

    Messages:
    5,072
    Likes:
    4,956
    believe me..i am aware
     
  5. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    Well I was able to find someone (friend of a friend) who lives in Eastern Europe and when they contacted the Russian pharmacy we were able to order the product to the US. It took 1 month to get here. Here it is, I just need a translation of the instructions: https://imgur.com/a/VF61O

    I mentioned to them that other english speaking people in western countries have been trying to order it but couldn't, and seeing what they advise. I'll update with that info.

    EDIT: this is what they said: "My name is Taras and now I'm responsible for a quick response to international Clients. Drop a short message to info at pharmalad.com "

    EDIT 2: Found a translation: https://archive.is/nVTsz - https://archive.is/Ltget - 30-40ml 4x/day for 7-10 days? That seems really excessive. The box comes with 4 20ml vials... I think I'll start with 1/10th of that so that 1 20ml vial will last a few days.

    I don't think this is an accurate view. For example, anything that softens my stool makes me way worse. Mutaflor (e.coli) softened my stool and made me way worse.
     
    Last edited: Jan 25, 2018
  6. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    Hey @Hip, could you update the OP with the following info? Or I could make a new thread.

    I originally dismissed this option due to the "$2,500 to $20,000" price quotes, but it looks like those are wrong, currently.


    Russian phages:
    So the Russian phages are available now by contacting (email) info at pharmalad.com.

    Instructions: https://archive.is/nVTsz - https://archive.is/Ltget - 30-40ml 4x/day 0.5-1 hour before eating for duration of 7-10 days. The box comes with 4 20ml vials.

    INTESTI BACTERIOPHAGE - 1 box = 34 USD
    International delivery - 42 USD

    1 box = 2x 40ml
    40ml 4x/day = 2 boxes per day, for 10 days = $34 x 2 x 10 = $680 + shipping.

    I didn't notice any impact from these, but I only took 1/10th of the recommended dose, and I did not opt for the cold pack, so they went unrefrigerated during the month it took them to ship.

    I find these "local" phages significantly more helpful (for fatigue & IBS-D): https://www.amazon.com/Nutrivee-Advanced-Prebiotic-Supports-Beneficial/dp/B01CTBDDWY - https://www.iherb.com/pr/MRM-Probiotic-Booster-with-Preforpro-30-Veggie-Caps/75971


    Eliava Phage Therapy Center, Tbilisi Georgia:
    http://eliavaphagetherapy.com/ - http://eliavaphagetherapy.com/faq-page/
    info@eptc.ge

    Costs: http://eliavaphagetherapy.com/price-list/
    Distant treatment:
    § €1900 includes online consultation with doctor
    § Repeat bacteriological analyses and phage sensitivity testing
    § Extra cost for Custom prepared “autophage” made on an individual basis (+€1000)

    Local treatment (clinic) (most effective):
    § 7-14 days – €3900, for difficult cases – over 14 Days – €3900 + €300 per day
    § includes all medical exams, labs, applications and phages. All additional charges will be explained and agreed upon before they are incurred.
    § Extra cost for Custom prepared “autophage” made on an individual basis (+€1000)

    Initial sample tested at the Eliava laboratory is €85. Over 600 bacteriophages in our collection. Don't have to travel there.

    Answered 2 weeks later, saying "I would recommend contacting Dr. Satya Ambrose in Oregon if you are not able to travel. https://www.sunnysidecocare.com/satya". But I don't see phages mentioned on that website.



    Phage Therapy Center, Tbilisi Georgia:
    mailbox@phagetherapycenter.com
    https://www.phagetherapycenter.com/
    CEO in California, Chris Smith.

    Most of this I learned after registering a free account on the website and contacting them:

    $200 for initial testing. "Treatment cost at the clinic ranges between 3000 and 4000 USD, including the cost of commercial phages. (custom phages are at a separate cost)"

    "we don't have an in-patient option, there's only outpatient or at-home treatment"

    "In those cases when patient can not travel to the clinic, we can ship phages to their address if we have a letter from his US doctor stating that he's aware his patient is importing phages for his personal use (no physical involvement in the actual treatment). The price in this case ranges between 1000 and 2000 USD."

    "Eliava Institute is the only place where phages are produced in Georgia and all the others use the same phages throughout the country, including us. The other link you sent is Russian phage and all we can say is that Georgia has 80+ years of experience in phages and Russian patients often come here for treatment."

    "It's never mandatory to travel to the clinic but rather recommended with certain cases to undergo treatment at the clinic when the whole body issues are addressed in a holistic way."
     
    Last edited: Feb 18, 2018
    Asklipia and cigana like this.
  7. Hip

    Hip Senior Member

    Messages:
    10,685
    Likes:
    17,565
    From your latest price figures, it seems the cheapest option for tailor-made phage therapy (ie, phages selected that specifically target your own bacterial infections) would be outpatient treatment from the Phage Therapy Center, who according to your figures charge $200 for the initial testing (selecting the phages), plus between $1,000 and $2,000 for the phages themselves, which are shipped to you.

    So the total cost would be around $1,200 to $2,200.
     
  8. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    I think tailor made/custom phages are an extra cost.

    My understanding is that at that price what they do is test your stool to see what microbes are in them, including seeking out pathogenic ones, and then they test if any of their currently existing phages kill them. And then if their current phages are inadequate they charge an extra cost to develop new ones to target your specific pathogens.
     
    cigana likes this.
  9. Hip

    Hip Senior Member

    Messages:
    10,685
    Likes:
    17,565
    Yes, that's what I meant by tailor-made phage therapy: you send a sample of your bacterial infection to the Phage Therapy Center, they then check through their large library of phages to find one that effectively kills the particular strain of bacteria you have.

    This contrasts to ready-made phage therapy products, which contain phages that target particular species of bacterium, but those phages may not work against your particular strain of bacteria.
     
    Last edited: Feb 18, 2018
  10. JES

    JES Senior Member

    Messages:
    653
    Likes:
    1,187
    I trialed a probiotic mix containing the same four phages as in Nutrivee last year, but it didn't seem to have any particular effect for me. I did some research on phages last year and it turned out that every commercially sold probiotic/phage mix I could find online contained the same four Myoviridae phages. It turned out very difficult to find what bacteria the mentioned phages actually are active against, but I eventually found some rather unspecific information that the activity is against "pathogenic E.coli". If they kill good E.coli in the same process it could potentially be detrimental for CFS/ME patients, as CFS patients are typically already low on beneficial E.coli, at least according to the blog of probiotic guru Ken Lassesen. The tailor-made phage therapy options sound very interesting though and the cost isn't that high if you compare it with some of the other CFS treatment options.
     
    cigana likes this.
  11. Hip

    Hip Senior Member

    Messages:
    10,685
    Likes:
    17,565
    I know that Dr Kenny De Meirleir looked into bacteriophage therapy for ME/CFS, because many years ago I asked him by email if he had ever considered this treatment option for ME/CFS, and he replied tersely: "Yes we have".

    So assuming he tried tailor-made phage therapy for some of his ME/CFS patients, and given that we have heard nothing about any success from such treatment, I am guessing it did not have much of a success rate.
     
  12. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    I commented on this previously in this thread. I think Lassesen's view/understanding is flawed.

    I also previously commented in this thread on "just the phages" vs "the phages + other probiotics" (which is what you tried). The differences are very significant for me.

    Doesn't seem necessary. Can just use the Phage Therapy Center.
     
  13. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    Dude... what are you doing... you (and JES) come into a thread and don't read any of the previous posts... you're just adding useless noise that people have to sift through now while looking through the thread for information.
     
  14. JES

    JES Senior Member

    Messages:
    653
    Likes:
    1,187
    Well the only difference can be in quantity of phages then, because literally every probiotic/phage mix I could find contained the same four phages as in Nutrivee. The one I used last year was Life Extension FLORASSIST GI, which according to the label contains the same 15 mg of phages as the Nutrivee and MRM products you linked. So if the quantity (and like the source of the phages) is the same, I don't see any rational reason for how it can be different. Anyway, I will try again with a pure phage version in near future, just in case.
     
    Last edited: Feb 19, 2018
  15. MaximilianKohler

    MaximilianKohler

    Messages:
    47
    Likes:
    23
    Anytime you add in another probiotic species/strain you are changing the effect whatever supplement you are taking has on you. See this probiotic guide: https://www.reddit.com/r/HumanMicrobiome/comments/6k5h9d

    If you take a mix you are changing the effect of the individual components would have if you were to take them individually.

    You are correct that they all contain the same 4 phages. I recently resupplied from this cheap option: https://www.iherb.com/pr/MRM-Probiotic-Booster-with-Preforpro-30-Veggie-Caps/75971

    EDIT: just realised this iherb product has isomalto-oligosaccharide, which is a prebiotic fiber, and will therefore also change the effect this has on many people. So this product isn't a good choice.
     
    Last edited: Feb 20, 2018
  16. lizw118

    lizw118 Senior Member

    Messages:
    314
    Likes:
    66

See more popular forum discussions.

Share This Page