Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Desperately need feedback

Discussion in 'Adrenal Dysfunction' started by Chiron, Aug 8, 2016.

  1. Chiron

    Chiron

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    Hi everyone... I'll try to stick to the facts because my story has been long. I'm hoping there are some kind souls out there who can read this and give me some pointers. I am running out of avenues.

    I'm 30. Been having bowel degradation for years now, since 2008 when I lived in Asia. Had many GI attacks there, from bad food, lots of antibiotics, and vaccines before I went. That year was probably ground zero for what follows.

    In the years to come, gradually declining GI functions, until finally diarrhea with blood. Come 2015, I had full on ulcerative colitis. I flared once in 2015, and once again this year in 2016. Both times nearly killed me. I am one of the most severe cases my doctors have ever seen. The only reason why I said no to bowel removal is because I feel in my heart of hearts that there is another way to deal with this. I am not a typical case.

    I'm posting this in Adrenal Dysfunction because I have a hunch and I need feedback from the experts here. I just started down the Adrenal research path recently, and rather than reinvent the wheel, I'm coming to you.

    This year during near-fatal flare #2, some independent testing I had done found parasites... blastocystis hominis, major candida overgrowth (to life threatening levels), and various other bacterial dysbiosis. The nurse at the lab said my numbers were higher than any UC patient she has seen, and she has worked there for 10 years.

    I was on 50mg oral prednisone for some months, and was able to come off it in early July.

    Unfortunately, 2 things happened in July that caused major problems. One is that I contracted a bacterial infection called aeromonas. Because I was on a chemotherapy biologic to suppress bowel inflammation, my body couldn't fight it. My guts bled (it's a hemolytic bacteria). I had to stop the biologic to remove immune suppression in order to treat it.

    Following that, I did a triple course antibiotic therapy to kill the pre-existing gut infections, based on an Australian protocol for blasto. I won't know if it worked or not for some time. Blasto is notoriously difficult to find in microscopy.

    Mid July I got into a car accident. Gave me a concussion, whiplash, and major back inflammation. Since then, my bowel inflammation has just got worse and worse -- I'm not flaring though. Been in bed all the time. Exhausted. Sleeping lots but poor quality sleep. Over all non-stop fatigue. The fatigue is not due to the bowels, the bowels are due to... I'm thinking cortisol depletion. My body has been through so much stress recently and the prednisone taper ended less than a month ago, my adrenals probably have nothing to give.

    I'm wondering though if it's possible that my IBD, or at least its severity, has been caused by adrenal depletion?

    Here's why I'm thinking that:
    - history of party drug use in my early 20's, especially stimulants
    - abuse of herbal adaptogens like ginseng and rhodiola in the past (long-term use)
    - I had a devastating breakup with my fiance; I cried for a month straight and literally had non-stop panic attacks and anxiety to crisis levels -- trauma to the nth degree that was never treated
    - I had a colonoscopy and biopsies performed not long after that breakup; three weeks later I began to have flare symptoms
    - I was a student for 6 years in post-secondary in high demand academia that caused me to neglect my body in many ways, and was stressful
    - both IV and oral prednisone use, 1/2 the year for two years in a row
    - slow healing across the board
    - sleeping lots but poor quality sleep, staying awake all night no matter how tired
    - a day of physical activity lands me in bed the next day
    - emotional mood swings, depression, anxiety, irrationality; poor memory
    - ongoing infections (like parasites) and tissue damage that won't heal
    - susceptibility to new infections: I'm the first aeromonas case in my region in 2 years, nobody gets it because usually the body fights it off if consumed
    - for the past 4-5 years, when I get a cold or flu, I'm flattened... can't get out of bed, and long recovery time; in fact, last year after I overcame my first life threatening UC flare, catching the flu in the autumn re-initiated bowel inflammation
    - symptoms worse in the winter and when sunlight is lacking (my most dangerous time)

    My body seems to have a disproportional / hyper response to invasion that has got worse and worse since I lived in Asia. Our bodies use cortisol to moderate the inflammatory cascade. Too much cortisol and the immune system crashes; too little and minor injuries become life threatening. Both my UC flares happened following stressful circumstances. My working theory is that I might really have UC, but it's out of control because of a pre-existing adrenal problem, likely developed in my 20's, or maybe even earlier?

    The hyper immune system thing has now taken a back seat because it is so depleted. My white blood cell counts are not awesome. They're low end of normal. When I'm on immune suppression, they return to normal. Remove immune suppression, and they decline again. An infection? Or just a totally dysfunctional body? I'm so confused.

    So either two things:
    1) I have had a sub-clinical GI infection since Asia, building and building, until either my adrenals or immune system crashed, and inflammatory hell broke loose. Most people with UC suffer horribly, but not to THIS degree. During flares it's like my body loses all ability to manage inflammation whatsoever.
    2) I have a pre-existing adrenal disorder of some kind that doesn't permit proportional immune system response. Maybe from vaccines. Maybe from genetics. Maybe something else.

    I have ruled out lack of probiotics. I have also ruled out lack of anti-microbials. Candida has been significantly scaled back, and parasite counts have been as well. Not sure if the parasites are gone completely because cysts are resilient, but bases are covered in both departments.

    What remains to be seen: healing and regeneration of the actual bowel tissue as a reason for ongoing symptoms *or* depleted adrenals making healing next to impossible *or* another hidden cause. Browsing these forums, viral infection seems to be a culprit in a lot of auto-immune disease... but how on Earth would I test for that?

    My questions:
    - can the inflammatory cascade be eased with hormone replacement?
    - even though there are some underlying issues to the UC, like maybe parasites and a history of bombarding infections, could it be possible that adrenal fatigue has now led me into uncontrolled inflammatory disease? In other words, could secondary adrenal insufficiency turn into a primary cause for another disease to relapse?
    - I've tried taking DHEA at 25mg/day, and I got negative feedback -- so either the dose needs to be significantly lower, or I'm barking up the wrong tree?
    - could prednenolone provide adrenal nourishment if there is depletion?
    - what tests should I ask my GP to run, to look into this? (or from an independent lab)
    - an odd question, but can head injuries disrupt the HPA axis? I remember reading a paper years ago, before I ever got sick, that said concussion victims can have uncontrolled TNF-a release; wish I still had it
    - I'm wondering if, after my car accident, there was enough new injury to deplete what little native cortisol my body was producing, leading to further bowel symptoms?

    It's obvious that fixing the underlying UC would help my adrenals, but even last year when I achieved quasi-remission, fatigue never improved... not even after 5 months. I was still stuck on the same limited diet.

    I am sorry if my questions have been asked a million and one times. I am currently bed ridden and energy is so limited. I realize that I probably have secondary adrenal insufficiency if anything, but I feel now I'm in a catch-22 position where the lack of adrenal strength is allowing sub-acute inflammation to linger and linger, making me susceptible to even more problems.

    I don't want to be stuck on prednisone. It feels like a vicious cycle. The more I use it, the less capable my body is of dealing with inflammation. I am constantly searching for underlying causes to my UC, and now my journey has led me to the wide world of adrenals. A huge topic, to be sure!

    Help, advice, starting points, guidance, words of kindness and wisdom -- all very much needed right now. I'm kind of reaching the end of my rope with my health, and we are entering late summer. This winter could be a death knell for me if I'm not careful, and if I don't find some practical, useful answers.

    Thank you kindly!
     
    Last edited: Aug 8, 2016
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  2. A.B.

    A.B. Senior Member

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  3. barbc56

    barbc56 Senior Member

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    @Chiron
    I'm so sorry you are experiencing so many health problems. UC is a devastating condition. I had a friend who had this for many years. She eventually had part of her bowel removed but it literally saved her life and she really did fine after that. But her surgery was on an emergency basis that might have been preventable, so it was not done under the best of circumstances. Fortunately, it all worked out. While her experience may or may not pertain to you, I know from what she went through the importance of staying on top of this and not delay whatever treatment that's needed.

    Your questions need to be answered by a doctor as none of us here have the expertise to give you sound medical advice.

    I assume you have a gastroenterologist?

    Please keep us posted as you are able. Best of luck to you and welcome to Phoenix Rising!:)
     
    Last edited: Aug 8, 2016
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  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello. Sorry to hear you're having such a bad time. Before I start I should explain I am not a doctor and you should ask professionals in health care what to do next whenever possible.



    Sounds potentially like ME/Lyme. Many PWME find out they have parasite infections/dysbiosis who have the symptoms of it, and test themselves privately. Some have candida also, not all.

    If you're in Australia, then as you know, they deny Borrelia is even in Australia (despite people dying of Lyme in Australia), so that's a slight problem. Having said that, positive antibody test results using 'established' tests, cannot be denied. One problem in Chronic Lyme, the more sick you get, the less likely you are to make antibodies. In addition even if you send your blood off to Igenex in America, they cannot measure all known pathogenic strains. The entire Lyme situation is a mess and not easily fixed to be honest, at least in the short term. As is stands Cytokine based tests (such as in Germany - Arminlabs), and others, can detect an IFN-gamma response to Borrelia and other infections, however, governments won't accept the test as it's 'in-direct'. Look up Borrelia Elispot, for the assays and similar.

    If you're dependent on state health care, I wouldn't tell that to a psychiatrist as they'll block you having any tests or only give you basic tests or send you straight to a psychobehavioural rehabilitation programme, that 'works' by not dwelling on physical problems - as you have physical problems (a diagnosis of UC), this won't correct your underlying issues.

    Doctors are often incredibly stressed and don't have the problems you have or any of us, as they don't have our diseases, hence they are practicing healthy doctors, just stressed.

    Stress wouldn't cause the problems you have, it would worsen an underlying problem such as an autoimmune disease/infection or CNS disorder all tied to inflammation. As ME CFS are increasingly tied to all the aforementioned, it wouldn't be unreasonable to say you have past events that worsened or 'triggered' a chronic illness. This is devastating to you, but in terms of medicine it's quite normal that people chronically ill, (immunogenic inflammatory disorder or otherwise) report prior or current stressful events. This is just normal, it's living, being alive. Don't beat yourself up over it or dwell over it. It' done now and the past.

    Once a chronic inflammatory disease is activated, you can't easily turn it off, but you can lessen it's affects by now avoiding stress. The slight problem is, an un treated chronic disease, in a severe form, is very stressful indeed.

    Catch 22.



    Did you measure your DHEA levels before taking more of it? If not, that's possibly why.

    Have you had tests to confirm you are depleted in adrenal hormones? Otherwise we risking repeating what happened in the question above. (E.g don't mess with your hormones unless a doctor confirms a deficiency/elevation).



    Good question, but subjective as we don't know your history and we aren't doctors. From a layperson's perspective I would suggest the following to be considered.

    Basic Test list:
    9am fasting morning cortisol, if abnormal repeat
    24hr Urine Free Cortsiol.

    Comprehensive Test list:

    The above +: Prolactin, Estradiol E2/Testosterone, Growth Hormone, SHBG.
    IGF-1 (frozen and centrifuge)
    ACTH with the cortisol

    Full work up (hospital based) Hollywood startlet test list:
    Five hour glucose tolerance test
    ACTH stimulation test
    Growth hormone stimulation test
    Pituitary MRI brain scan (high resolution)
    CT Adrenal gland scan
    Pituitary antibodies test


    People can have a head injury and develop adult growth hormone deficiency,yes. It's also not uncommon to develop neurological (e.g. POTS in ME CFS) or neuropsychiatric problems if the brain has been 'attacked' in some way.

    In ME, a less obvious (but then very obvious to me) explanation is brain inflammation messing around
    with pituitary hormones. To catch this you would need to have multiple tests, repeated, over a year or so, on random days and also make a note how ill you are on the day of the blood draw.



    If you're worried about TNF-a release, test for it if it helps? Some PWCFS have this elevated, again, to 'prove' anything you'd need to have multiple tests. Even if it was elevated, it wouldn't be much to write home
    about other than you finding a single marker than some PWCFS have.

    A better option is to find a comprehensive cytokine panel + chemokine panel + IFN-g, IFN-a of multiple tests and do this instead. Multiple, high level cytokines, can cause many horrible symptoms (flu like) and also induce neurocognitive/psychiatric symptoms, such as anxiety - caused by a chronically activated immune system not your mind. Finding in a test in Australia, is easier said than done and probably not even possible unless you found a lab associated to a University laboratory.



    If you have low cortisol, why aren't you re-testing it? If GP won't agree, can you find another?
    If you have test and it's low, has it just been 'left'?
    If it has, consider the tests I mentioned, the most important being deciphering if you have a genuine adrenal failure issue with your adrenal glands (possible in ME), or a brain derived control problem (far more likely in ME) - hence you'd need an ACTH stimulation test.



    If possible, avoid thinking about fatigue. Fatigue in medicine is the most common, but still subjective complaint, and only well established conditions using common screening tests will be picked up in tests anyway that cause 'fatigue', e.g. Thyroid, anemia, cancer, diabetes etc, so you're unlikely to find a cause focusing on this as a locating device for doctors to help find out why you feel unwell. In other words, they need more information to go on.



    As previously mentioned, if you're worried you need a workup of your adrenal system otherwise a doctor will tell you it's just a subjective guess this is the problem you have, which will only make you feel worse, due to psychogenic stress response from this worry (normal human response, I'm not suggesting you have psychological issues).

    You ideally need to test inflammatory markers, problem is, in ME CFS these are not in use (other than research).
    So the only option you have is to rule out 'classical', established inflammatory in markers. In ME, these are usually negative, unless on the day of the test you have an infection, or another undiagnosed disorder/autoimmune disease you didn't know you had:

    Standard test any doctors office can order for inflammation and cell/muscle damage are:

    ESR
    CRP

    LDH
    CK


    Mine LDH is never normal, yours might be though. This is the problem with a heterogeneous disorder such ME CFS and then add on top, other chronic conditions people pick up over time that my or may not be related to certain subsets of ME CFS. E.g. very complicated situation to be sure about anything or the route to take.



    This is a very hard question to answer, but I'll give a basic reply to save both of our brains:

    If you have an intact fully functioning immune system and don't have severe ME, then you should still make antibodies. On this basis you can screen for practically every common virus known to man. However, I would stick to ME CFS associated viral infections to save money and blood: HHV-6, EBV, Parvovirus B19, CMV, Entero/Coxsackie viruses, or if you've been abroad, research those countries and get more exotic.

    If, however, you're immune system is damaged, you can still be infected but don't launch an antibody response to specific infections associated to ME CFS (the research isn't there yet, never mind established fact on this).

    One option is to do specific pathogen cultures (very expensive) or PCR (also expensive). PCR can be pot luck as PCR often has low sensitivity for Borrelia and its co-infections , but if it detects it, then you really do have an infection. NB: If you have tissue infection of your gut or brain, it likely won't show up in your blood! What can 'feel' like a virus is a tick borne infection/parasite etc. Again as above, many PWME very ill, don't make antibodies and thus the tests are false negative.

    Also factor in autoimmunity with your specific issue, virus or bacterial tests might now show a thing.

    For detection, as a last resort, if you have obvious signs of infection (raised lymph glands, shortness of breath, dizziness, tachycardia, etc - all symptoms of ME CFS Lyme anyway) is a doctor MIGHT do a wide spectrum blood culture to see what they can grow. This is unpleasant, and takes lots of blood as to do it properly you take multiple big vials. That's why it's supervised as it could cause anemia to have lots of blood taken and also make you feel ghastly afterwards.

    Other thoughts:

    Last point. If you had a vehicle accident and have chronic unexplained pain or other central nervous system
    problems since this date that either got you a CFS diagnosis or worsened it, I would have an Autonomic
    Nervous System investigation done, primarily a TILT-TABLE test. ANS controls everything in your body under automatic control, including bowel function and how you process pain in your stomach, after eating or otherwise.

    I also noted you had extra vaccines as an adult (as do others with severe bedridden ME I've noticed). Make sure you write down the names and dates of when this was and keep this data to one side for future reference should research come out that shows these are statistically 'associated' to UC or other autoimmune chronic illnesses, or can trigger them.

    Hope that helps and good luck.
     
    Last edited: Aug 8, 2016
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    @Chiron
    It sounds as if you have severe UC, which can cause very severe fatigue even if the bowel seems quiet. I am sorry to hear you are in such trouble. I agree with barbc56 that you should stick to the advice of your gastroenterologist. I am a physician but I am still not in a position to advise you. Severe UC is not something anyone without expert knowledge should advise on. You may need surgery to have a good chance of getting well. I don't think you should be thinking in terms of ME/CFS and certainly not Lyme disease. UC provides a full explanation for severe fatigue. UC is not caused by adrenal failure but after steroid usage adrenals may be slow to produce adequate levels of corticosteroids.
     
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  6. Hutan

    Hutan Kina solidarity

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    @Chiron - addressing one small part of your story:
    Regarding Blastocystis hominis - there are a number of different strains, some sufficiently different that they could easily be regarded as different species. Some of the strains are associated with illness. But many of them are not. Indeed in one study it was found that children with Blastocystis were healthier than those without.

    I know you have treated your Blastocystis and you are waiting to see if it has worked. If it continues to be found and it concerns you, it would be worth trying to find out exactly what strain you have. This would help you decide if further treatment is a good idea or if you can perhaps put that theory to one side.

    For what it is worth, I and my family lived in Asia for some time and, after we developed ME, we were found to have a range of gut parasites including Blastocystis. Treatment with Paromomycin seemed to make me feel better, but that coincided with the start of summer. And we reliably feel better in summer and worse in winter, as you do.

    You seem worried about your forthcoming winter. Have you thought about steps you could take to potentially ameliorate your winter (go stay with someone who lives closer to the equator/in the opposite hemisphere; have holidays somewhere sunny, get a lamp that mimics the radiation from the sun, make sure you get outside more)? We are in the depths of the Southern Hemisphere winter here and we are worse. So I am thinking about these things.
     
  7. Groggy Doggy

    Groggy Doggy Building a New Home

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    A head injury can disrupt the way your body uses Leptin. If Leptin is not working properly, then your body may not be sending enough cholesterol to your brain; this can cause brain fog and fatigue.

    GD :dog:
     
  8. kangaSue

    kangaSue Senior Member

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    I reckon addressing the bacterial dysbiosis is where you will get the biggest bang for your buck.The only real success stories I have heard of for getting UC into remission without being reliant on some serious meds is by doing fecal transplants (FMT).

    It's not something that will cure you from a one off treatment and it's not unheard of to have to persist with doing weekly FMT's for UC for a year or more so it's a big commitment but there are some encouraging results revealed in much of the literature on the subject.

    Many follow the d.i.y. instructions here http://thepowerofpoop.com/epatients/fecal-transplant-instructions/
     
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  9. barbc56

    barbc56 Senior Member

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    Is there science to back this claim?

    I would really hope no one would try experimenting on themselves with FT. Fecal matter can be deadly. This caution is even more important for someone with UC.

    When FT is done with medical supervision, the donor's stool is tested, food separated from fecal matter, the bad bacteria is treated, the correct blood tests and strong antibiotics are given as well as many other checks. Only a medical practioner has the experience, knowledge and skill to perform FT correctly and cause the least amount of harm.

    There are so many things that can go wrong with a do it yourself procedure. Contamination from a poorly prepared stool sample, an undetected illness in either the donor or recipient as well as incomplete separation and sterilization of the good from the bad bacteria. With a do it yourself procedure you can't check the colon for inflammation that might only be visible with a colonoscopy. You don't have what's needed to take care of unexpected emergencies.

    There's a huge potential for sepsis if you accidentally puncture the colon or even scratch the wall but not feel any injury. Is especially important to have a strong enough antibiotic or tainted if you order the medication online because what doctor is going to write a script without a reason?

    UC is a serious medical illness of the colon. The colon is inflamed and has ulcers. This procedure given at home is dangerous enough for a healthy person but it can be especially dangerous for someone with a colon condition such as UC.
     
    Last edited: Aug 10, 2016
  10. kangaSue

    kangaSue Senior Member

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    There are a number of clinical trials underway further assessing efficacy of FMT in UC but there is already a number of completed studies showing positive results for many people, just a couple of examples;

    http://www.gastrojournal.org/article/S0016-5085(15)00451-5/fulltext;
    This study concluded that [FMT "induces remission in a significantly greater percentage of patients with active UC than placebo, with no difference in adverse events." Seventy patients completed the study trial over a six-week period and were given six infusions, either placebo or FMT, through the lower GI route. The authors noted that fecal donor and timing of the UC did affect outcomes in their trial.]

    http://www.medscape.com/viewarticle/860690
    https://www.sciencedaily.com/releases/2015/07/150702132806.htm

    A fault that I see with some of the less than positive studies is that they are only doing a few FMT infusions (less than 5 in total) to conclude there was not much affect from FMT. I think that's unrealistic when it can take months for the bowel to heal with advanced mucosa damage from UC. That fact is that FMT actually heals the ulceration without exacebating the condition, something most drugs can't do.

    If you watch any documentary on FMT, fresh raw faeces is used without further processing other than blending with water and straining out the largest of any solids. The d.i.y. instructions do make the point of suggesting the screening of donors and proper hygiene measures to be taken and there are relatively few instances of any serious adverse side effects reported even with the d.i.y. population.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I agree with barbc56, @kangaSue. Are you aware that severe UC is a condition with a significant mortality, like cancer and that one of the main reasons for bowel remove is because the diseased bowel in UC has a high risk of becoming cancerous. UC has nothing to do with ME/CFS, apart from producing what may seem similar fatigue. We want to be sure that someone with UC follows the advice of their physicians. There is no evidence for faecal transplantation having any place in the management of this sort of serious condition. I think we need to be very careful what we say on this site because people often make irrational decisions when they are frightened.
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I could not find anything on the URLs above except Science Daily, which took me to a paper by Moayyedi in 2015. The same author in 2016 writes:

    Systematic reviews have identified four case series involving 27 ulcerative colitis patients with a pooled remission rate of 24% (95% confidence interval (CI) = 11-45%). Two randomized controlled trials evaluating a total of 123 active ulcerative colitis patients have given conflicting results ...

    SUMMARY:
    At present there are insufficient data to recommend FMT in IBD, and patients certainly should not be administering this themselves.
     
  13. barbc56

    barbc56 Senior Member

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    I think the whole area of microbiomes. and FT are absolutely fascinating and may have a potential clinical value in the future.

    The point of my post was that a do it yourself method is dangerous and reckless. This is medical advice which can be harmful and even has the potential to cause death.
    After almost forty years following the removal of part of her colon, along with good health, my friend with UC, whom I mentioned above, developed a condition called Primary sclerosing cholangitis where the only cure Is a liver transplant. She was on a liver transplant register. Unfortunately, several weeks later she was diagnosed with cholangiocacinoma which can be managed but is eventually fatal. The survival rate is very low beyond two years. Two months later shd died.

    The above conditions are caused by the UC. There are other intestinal diseases that may causd the same conditions.. Unfortunately, she was not checked for this even after a year of abnormal liver function tests. This may have prolonged her life but it's not known to what extent.

    I'm sharing this to show that UC is a serious disease. Fortunately, she had forty years of good health with relative few problems associated with UC after the surgery.
     
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  14. kangaSue

    kangaSue Senior Member

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    @Jonathan Edwards Not everyone in this forum has ME/CFS, some of us just have chronic GI issues and the original poster posed their question in the context of Ulcerative Colitis. I fully understand that UC is a serious disease and I'm not advocating anyone resort to trying FMT as an alternative to having their condition fully appraised by medical experts but it's a promising intervention for some in a drug refractory condition.

    The url's above appear correct, http://www.gastrojournal.org/article/S0016-5085(15)00451-5/fulltext If that doesn't open, the full name of this paper is "Fecal Microbiota Transplantation Induces Remission in Patients With Active Ulcerative Colitis in a Randomized Controlled Trial"

    Other papers;
    http://www.ncbi.nlm.nih.gov/pubmed/25954111
    http://www.ncbi.nlm.nih.gov/pubmed/27152073
    http://www.ncbi.nlm.nih.gov/pubmed/27295210

    You're missing some important wording off the above conclusion, "...but the pooled data do suggest benefit with a number needed to treat of 6 (FMT infusions)."

    I'm not breaking any new ground in talking about FMT, most of this stuff is already in circulation in other PR threads. The evidence abounds that there are far more serious consequences suffered from treating GI issues with conventional meds. Serious consequences from doing FMT are very thin on the ground in comparison, even with UC.
     
  15. barbc56

    barbc56 Senior Member

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    I can't find any studies or data collection on this but I may be looking in the wrong place.

    Thanks!

    Edid. I found this on a study of FT for UC.
    However it looks like a lot of studies are in the works. I think this treatment is worth watching.

    As I said before I find patients doing a do it yourself approach is quite worrisome.
    .
     
    Last edited: Aug 11, 2016
  16. kangaSue

    kangaSue Senior Member

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    Dying from UC or any other chronic GI dysfunction is a wee bit worrisome too!

    Due to the nature of what's involved, it's invariably a consideration of last resort. It's not rocket science and it's following the same practice as done in some clinical practices, expectant that the same hygiene practices are adhered to.
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    This forum is for ME/CFS discussion. We try to avoid any advice on medical treatment even on ME/CFS. Considering the severity of UC I think there is a real problem here.


    I spent quite a lot of time sifting through the links that would actually work. There is nothing here to base recommendation on and as indicated above, that is the view of the author of the main study.


    That is not important wording. It is the author trying to save face. If the studies are conflicting then, as he says, there is no basis for recommendation. Pooling data is not a legitimate thing to do unless proper meta-analysis techniques are used.

    I think perhaps the important wording in that controlled trial is that it was discontinued early by the oversight committees for 'futility'. That presumably means that during the study the number of people who got better was so insignificant they thought they had better give up early. That suggests a pretty useless outcome. They then continued to follow people and found a statistically significant difference. A statistical difference is of no interest if it represents a clinical difference so small that the study is closed down. I am pretty confident that if anyone tries to repeat this they will get nothing out of it.

    Of course there are more serious consequences from conventional therapies but at least they work. As indicated above this is exactly the same situation as for cancer, since one of the main reasons for using conventional therapies for UC is to reduce the rate of cancer. We do not recommend alternative therapies for cancer when there is conventional therapy that works.

    I realise that faecal transplantation is currently perceived as at the margin between alternative and conventional therapy because microbiota have become trendy for research in university centres. But until there is some convincing evidence it does anyone any good I would call it alternative. I am pretty sure that it will never be shown to be any use. It raises all sorts of problems of methodology. One of the worrying thing about the controlled study is that several of the patients got the transplant from the same single do not - so how do we know the same effect would happen with any of the other 6 billion possible donors! This is shoddy science I am afraid. And if people are worried that ME and other conditions might be due to unrecognised infections what on earth would we be thinking of spreading unknown germs from one person to another deliberately?
     
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  18. kangaSue

    kangaSue Senior Member

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    Surely you're not suggesting that there isn't any overlap in ME/CFS with other conditions?

    Can you point me to any rules that excludes anyone other than those with ME/CFS from contributing to this forum, if I have contravened them I will relinquish my membership.

    I thought it was taken as a given by everyone that comments made in the forum were not to be followed ad hoc without the appropriate medical consultation.
    Is this in reference to faecal transplant for all conditions in general or just for UC. While it's not conclusive as a treatment for UC, FMT is saving lives every day in mainstream medicine treating C. diff so while I respect your opinion, I have to agree to disagree to your sentiment.

    It is no secret that donor inconsistency is a widely recognised and publicised short coming and FMT is not an exact science because no two people have the same microbiome make up.

    To put it into perspective, perhaps you can answer another question for me. What number of deaths do you consider acceptable in medical practice when all conventional meds have failed to address the issue?
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not sure why you are so keen to defend faecal transplant, chanteuse but I don't think you realise what fire you are playing with.

    There is no overlap between ME/CFS and sever UC. Otherwise your comment is aI think non sequitur.

    It is absolutely NOT taken as a given that members will not take suggestions without consulting their doctor. To suggest that is very naïve, I think. People here are desperate and they are frightened of doctors and side effects. They frequently take up suggestions of others without asking a doctor. However many disclaimers there may be on the site or personal signatures they are of no consequence in this respect. If a doctor recommends something unproven where there are proven therapies (the case here) and someone suffers they are morally responsible. The difference between the doctor and everyone else is that they are supposed to be in possession of the facts. As far as I am concerned anyone else who thinks they are in possession of the facts has exactly the same moral responsibility - and it is no way affected by disclaimers. If someone does not think they are in possession of the facts it would seem irresponsible to make suggestions anyway.

    I don;t think it is too difficult to see that the comparison with treating C diff is irrelevant. It is not the same treatment. In C diff infection the patient has no bowel flora because of antibiotic therapy. The treatment is to return bowel flora. It is like putting a skin graft on when there is a patch of skin missing. That is not the same as putting a skin graft on when you do not know what if anything is missing.

    I think you should consider long and hard what faecal transplant treatment for other conditions is about. It is the transfer of one or more UNKNOWN microbes from one person to another person who is believed not to be colonised by those microbes. If that does not sound familiar think of the extermination of native Americans by smallpox and syphillis, or the spread of HIV in the west probably following IV drug usage, or the death of many mentally retarded children in care homes from hepatitis because they ate each others' faeces, or the death of a dozen or so people from a horrible brain disease after eating cows that had eaten cows, or the spread of multiply resistant staph aureus in hospitals. These are all examples of some change in behaviour causing in some cases millions of deaths from UNKOWN organisms being transferred in new and UNEXPECTED ways. In the history of medicine if you want a cause of premature death due to human practices then cross-infection with microbes probably accounts for more than all the others put together. If you asking about how many deaths are acceptable then I would say the potential for millions is not good enough! My mother was director of the Standards lab at the UK Central Public Health Laboratory. I think she would consider faecal transplantation in this context lunacy. Remember that the last case of fatal smallpox in the Western world was a lab worker in the same institution because someone was messing around with the virus.

    The key point is that if we knew there was one particular microbe to transfer we would transfer pure cultures, not give people poo. And if we have no idea what it is we are passing from one person to another we can be pretty sure that something nasty and unknown will get passed as well. This has nothing to do with the C diff situation where we are using the only known method of keeping people alive not by transferring someone unknown magic ingredient but just the bulk of normal flora - and presumably after screening for pathogens.
     
    Last edited by a moderator: Aug 15, 2016
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  20. kangaSue

    kangaSue Senior Member

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    When you are in the position of slowly and painfully dying from chronic GI dysfunction where there isn't any effective meds to control symptoms and the best suggestion that the medical fraternity has left is to just learn to live with things as they are, it sharpens your mind to other viable alternatives other than taking a more drastic pathway to end your suffering. That's where I'm coming from.
     

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