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Saw Dr Paul Froomes in Melbourne

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by outdamnspot, Oct 13, 2016.

  1. outdamnspot

    outdamnspot Senior Member

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    He trained under Thomas Borody in Sydney and has an interest in dysbiosis/FMT. The appointment was disappointingly brief -- about 10 minutes, $300 -- but he basically said my gut is in a terrible state, due to a Strep + Prevotella undergrowth, and a lack of any good bacteria.

    He offers an 8-week program to treat the dysbiosis: first, kill off the overgrowth with antibiotics. Then:

    Week 1 (Dysbiosis) = Ultraprobioplex, Parex, Bactrex

    Week 2 (Microbiome) = UltraBiotic IBS, Mutaflor, Ultraflora digest, Multigest, ACV

    Week 3 (Visceral Hypersensitivity) = Biovea, Calm X, Zinc, Probex, Adrenoplex

    Week 4 (Leaky Gut) = Glutagenics, L-Arginine, Vit D3, Omega Trienols, Probiozyme

    The whole program costs $800 and I'm already in debt, with no income source. I'm wondering if it's worth it. My symptoms are completely disabling, but he wasn't able to tell me if certain issues (neurological symptoms -- balance problems etc.) are originating from the gut. My concern is how much better I can expect to feel from all of it, i.e. if the gut problems will just recur, and also how much they might be contributing to my CFS.

    Alternatively, I can wait to see the CFS doctor who ordered the test to see if she can offer a cheaper alternative program.

    There's also FMT ...
     
    TiredSam likes this.
  2. Woolie

    Woolie Senior Member

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    Whatever you decide, just bear in mind we are desperate and vulnerable to all sorts of promises. But there's nothing yet that has been shown to cure or even substantially relieve CFS. I have been sold a lot of rubbish by doctors over the years, you really believe it at the time, but then its so disappointing when it doesn't work.

    I figure, try anything if it doesn't cost an arm or a leg. If it does, demand evidence.

    Perhaps others here might have some success stories with these sorts of approaches. But if you don't hear any, then don't spend your money.
     
    Last edited: Oct 14, 2016
    AndyPandy, Hutan, barbc56 and 2 others like this.
  3. outdamnspot

    outdamnspot Senior Member

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    The thing is, I unfortunately don't feel like I have much choice other than to try and address my gut. The physical stuff is disruptive, but what this has done to my mood is indescribable -- I already suffer from depression and anxiety, but it's the blackest, most debilitating depression I've experienced, replete with constant suicidal ideation. What gave me hope was that the creator of thepowerofpoop described something similar (a really nightmarish psychological descent), which addressing her Strep overgrowth remedied; she did have to resort to FMT, however.

    I'm guessing any gut program for dysbiosis is going to be similar, i.e. killing the overgrowth, then repopulating with specialized probiotics. I've seen a lot of flaky integrative doctors and naturopaths too, but at least this is coming from a specialist (if that means anything).

    I've been speaking to Ken Lassesen from cfsremission who believes CFS is essentially a dysbiosis problem, and that any effective treatment will shift the microbiota in the right direction.
     
  4. kangaSue

    kangaSue Senior Member

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    Now that's what I call piss poor value for money.

    Do you have tolerance issues to foods and supplements as it stands now? What's the chances that you will tolerate the things in the proposed treatment protocol?

    There are no guarantees with any course of treatment for chronic conditions so if one already knows they would likely have problems with such a protocol, then FMT (which is a whole new microbiome in one hit) becomes a tempting proposition if one has access to a healthy (screened) donor and 50 bucks for a bit of d.i.y. equipment.
     
  5. kangaSue

    kangaSue Senior Member

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    If I saw this post first, my first suggestion would be to look into low dose naltrexone. It has had positive results for some in CFS, Depression and IBD.
     
  6. outdamnspot

    outdamnspot Senior Member

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    Yep, he must be raking it in. I thought first specialist consults were 45 minutes .. He saw like 3 people while I was sitting there.

    I have a lot of food intolerances and do struggle with supplements, but I thought it might be a case where enduring negatives reactions and healing my gut could partially address some of that. It's a bit of a catch-22 where my immune/toxin load makes tolerating things difficult, but is also something that needs to be dealt with. For example, I tried activated charcoal recently and felt horrible -- hypoglycemic, dizzy, depressed. I blame the charcoal and almost gave up, but ended up persisting for a week and was fine; during that period, I was passing the most awful stools and eliminating a lot of junk.

    I did post an advert for an FMT donor online (doing it with the gastro would be unaffordable); would need to pay to have them screened (the stool test is expensive) but it is also an option ..
     
  7. outdamnspot

    outdamnspot Senior Member

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    I tried it. It 'crashed' me terribly, and I gave up after a few days. Maybe I should have stuck with it longer ..
     
  8. kangaSue

    kangaSue Senior Member

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    Yeah, that is the least that I would have expected too.
    Don't think I'd be game to go that route. Hard to find a suitable donor when you get isolated from family and friends because of chronic illness but one screening cheat I discovered was to look for someone that's also a blood donor, they are screened for a lot of the serious blood borne things before their blood is acceptable.

    I have chronic GI dysfunction with having severe gastroparesis and had some success for a couple of years with prescription nitrates (didn't tolerate arginine) as there was evidence found of intestinal ischemia but nothing has worked long term for healing the gut and it just gets progressively worse even with being tested for just about everything under the sun.
    I gave LDN a crack too. Got down as low as doing 0.5 mg once a week but still couldn't tolerate it.
     
  9. outdamnspot

    outdamnspot Senior Member

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    I will talk to the donor; they're also a med student, so might be more in touch with what they'd need to be screened for.

    Were you checked for dysbiosis?
     
  10. kangaSue

    kangaSue Senior Member

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    If you mean as in doing a count of the different microbial species, then no.
     
  11. CCC

    CCC Senior Member

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    We attended Borody's clinic and got charged about the same thing for a first, 15-minute visit. It's just what these specialists charge, and it's the same for 15 or 50 minutes.
     
  12. Mel9

    Mel9 Senior Member

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    Does n
    Does not sound promising at that cost!
    My first appointment was similar cost for over an hour and a half of intensive questioning

    How did he know all about you in 10 minutes?
     
  13. Mary

    Mary Senior Member

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    I agree, you need to address your gut. However, to me it's criminal to have to spend $300 for 10 minutes of a doctor's time - I don't care how good he is supposed to be. I don't care if it's what others are charging, it doesn't make it right - unfortunately we are desperate and so willing to do almost anything to regain our health.

    Having said this, there are many things you can try on your own which can be beneficial for your gut. A major issue for many of us with ME/CFS is low stomach acid, and low stomach acid can contribute to and cause overgrowth of various bacteria. If you google SIBO and low stomach acid, you'll find a lot of information. I've been taking betaine HCL with pepsin for many years, I was told to start with one and work up gradually until I felt "acidy", which I did feel at 4 capsules before a meal, so I backed down to 3. And this alone improved my gut a lot. This is what I've been taking: http://www.swansonvitamins.com/swanson-premium-hydrochloric-acid-pepsin-250-caps I read once that it is important to have pepsin with HCL, but can't remember why.

    There are many other things you can try on your own. Sarah Myhill has a whole section on the gut: http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS

    If I were you, I would educate myself as much as possible, I would research the supplements the doctor is recommending and I have no doubt you could get comparable products cheaper than spending $800 on this. One product you list, Glutagenics, costs $62 for 9 oz. on-line. Well, the ingredients are aloe vera, DGL licorice and glutamine! It's ridiculous. You could buy a ton of those 3 things for $62, way more than you would need. There is no doubt glutamine is good for the gut, but it's a cheap amino acid. Aloe vera is cheap, so is the DGL licorice.

    Also, kefir has helped my gut a lot. I tried several different probiotics and even though I have a diary allergy, kefir was very good for my gut.

    Good luck!
     
  14. outdamnspot

    outdamnspot Senior Member

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    Were they able to help you at all?
     
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  15. CCC

    CCC Senior Member

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    They were, but we already knew the problem: antibiotic resistant Dientamoeba fragilis infection (a gut parasite). We had the test results to show it, plus a failed previous treatment.

    We were going there for the treatment that facility provides, and we were prepared for the cost.
     
  16. Art Vandelay

    Art Vandelay Senior Member

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    I saw Dr Borody at the CDD for a blastocystis infection. (He was excellent.) Two courses of their triple antibiotic combo got rid of the blasto which led to an improvement in many of my IBS symptoms (eg, diarrhoea). However it didn't improve any of my ME/CFS symptoms.

    Borody and others claim that FMT can send ME/CFS into remission (and he's published a paper on it). However, everyone I've spoken to who has had FMT here had a temporary improvement in symptoms (or even remission) for 2.3 months and then they've relapsed. I've decided it's not worth the $8000 or so.

    In my view, my gut problems are not the cause of my ME/CFS, rather they are a by-product of inflammation.
     
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  17. Gatorjake3

    Gatorjake3

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    I respect your view and like many others on this forum believe that CFS affects everyone differently with different subsets. Personally I believe I am one of the ones who was brought here after antibiotics/accutane and poor gut health as a kid and believe FMT would be worth a try. My question or thought is this, If those who find improvement for 2-3 months from FMT but then stop using it, why would you not then try to find a donor who can consistently provide you with good samples even if they have to do it for years and years if not a lifetime? To me I would do FMT for the rest of my life If I knew it was helping or even came close to a cure.

    just my thoughts...
     
    Art Vandelay likes this.
  18. Art Vandelay

    Art Vandelay Senior Member

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    I agree. If FMT continued to keep you in remission, it would definitely be worth continuing with it.

    From the anecdotal reports I got, these patients who had relapsed after 2-3 months of remission did not experience any benefits from further FMT.

    As you say, we're all different, so this may not be the experience for everyone. Borody's studies do suggest that some people have seen improvement in the long term from FMT.
     
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  19. Gatorjake3

    Gatorjake3

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    do you by chance have the link to his papers on this?
     
  20. Art Vandelay

    Art Vandelay Senior Member

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    Gatorjake3 likes this.

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