1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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colonics

Discussion in 'Alternative Therapies' started by Tammie, Jun 12, 2010.

  1. Tammie

    Tammie Senior Member

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    I have a friend who finally seems to really get how sick I am and is eager to help.....that part is, of course, wonderful; however, he is now kind of pushing for me to get colonics bc he talked to his chiro and she recommended them

    personally, though I do believe that detox can be very beneficial, I am quite skeptical about this idea & actually vaguely remember reading that they could be harmful.......plus the follow up that his chiro recommends (fasting for three days followed by some dietary restrictions and probiotics) are definitely out of the question for me for several reasons

    anyway, I would love to hear any/all opinions/experiences with/knowledge about/research links, etc re colonics....good, bad, other
     
  2. alex3619

    alex3619 Senior Member

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    Hi Tammie,

    There was a survey of patients some years ago that looked at what were the worst side effects from medical interventions. I don't recall where it was, maybe someone else on this site remembers, but you might be able to find it. From memory they were:

    1. beta blockers
    2. colonic irrigation
    3. SSRIs
    4. Graded exercise therapy
    5. Cognitive behavioural therapy

    Does anyone have a better recollection than me?

    Many people with CFS or ME have very damaged intestines. Anything that could damage them more is suspect. This is something to be very very carefull of. The idea of colonic irrigation as detox has very little basis, though I am not aware of any good research aimed at finding out how useful it is in treating gut dysbiosis, so maybe it has a place, just not for most CFS and ME patients.

    It is not entirely clear what your diagnosis is. If you have FMS and not CFS or ME then it might be that you could handle it - maybe someone with FMS could comment on this?

    Bye
    Alex
     
  3. camas

    camas Senior Member

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    My normally mild mannered DO went ballistic when I mentioned that my cousin's wife, an ND, suggested colonics for me. He said that with my leaky gut issues, which many of us with CFS have, that a colonic could suddenly force many toxins into the bloodstream leaving me feeling much worse. I took his word for it.
     
  4. Tammie

    Tammie Senior Member

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    Alex, I have ME/CFS, FM, MCS, OI, and several more diagnoses......I thought this board was all about ME/CFS, though so I am not sure why my diagnoses would be unclear

    thank you so much for your reply, though....that definitely helps : ) .....I will definitely try to find that survey
     
  5. Tammie

    Tammie Senior Member

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    very interesting, esp since the chiropractor I mentioned was suggesting colonics for leaky gut......it certainly makes sense to me, though, that toxins would get forced into the bloodstream doing that

    my gut response (yes, I know bad pun), is that this is NOT somethign I want to try, but like I said, I am open to hearing good and bad on this subject

    thanks for your response
     
  6. Tammie

    Tammie Senior Member

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    Alex, I found the survey......it was a 1999 CFIDS Assoc Reader Survey, and you were rt about the results - good memory 60% of those who had tried colonics either had no effect or were made worse; only 10% said it was very helpful

    even if it had no effect, it would be a big waste of money and of my valuable and very limited energy
     
  7. silicon

    silicon Senior Member

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    My experience with colonics has been neutral to negative. I haven't done them in over 17 years, but back then I was influenced by people who advocated them for their detox value (often in combination with fasting--another thing that I no longer do). Every time I felt weaker, and finally I had to listen to my body. I do think there is a place for them, but not for me.
     
  8. Jenny

    Jenny Senior Member

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    FWIW I had colonic irrigation for 9 months in the 1980s after I'd been ill for 3 years. I had one every 2-3 weeks. There was no fasting, but I had a cup of freshly juiced organic vegetables 3 times a day for all this time.

    I felt very much better immediately after each colonic and this lasted about 2 days. And over time I improved considerably, but although I think it's likely that this was due to the colonics I can't say for certain. After 9 months I reached a plateau, and stopped. For the next 3 years I had acupuncture and Chinese herbs and was then 95% well for 12 years.

    If was well enough to leave the house now I would try colonics again.

    Jenny
     
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I wouldn't get one, that is just me. I believe in healthful food, fiber and water, juice etc. The body naturally cleanses itself.
     
  10. Tammie

    Tammie Senior Member

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    silicon, jenny, and sallysblooms, thank you for your input.....I definitely appreciate learning of your experiences/thoughts
     
  11. Michael Dessin

    Michael Dessin Senior Member

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    I think this is an important topic as it seems colonics are highly promoted throughout the alternative minded community.

    When we see supplements or tx promoted, in many cases ME patients will not respond the same way as most other persons will, who do the same treatments.

    Colonics, in general are VERY good but not recommended in patients with leaky gut and if you have ME/CFS assume you have leaky gut.

    The reasons why they are not good have been highlighted by Alex and others on this thread.

    However for me they were an intrical part in my tx. I had done a colonic several years ago and had a very bad reaction, as if toxins had been redistributed from my gut to the rest of my body.

    The second time around, I had done colonics as one segment in a more complete program. We can rid our bodies of huge amounts of toxins through colonics, which is great and will help us recover health to an extent. WHen combined into a program that focuses on the health of the gut wall and strengthening of the intestines there is much less redistribution of toxins through the gut wall due to leaky gut.

    Everytime I had a colonic I would take bentonite which helps absorb and bind toxins before they are released into the bloodstream due to water pressure. I would also replenish with probiotics right after the colonic to restore healthy balance in the gut.

    Most importantly for me was acupuncture which helped strengthen my gut dramatically. I made sure I did acupuncture the day before colonic and after, focusing on the stomach.

    So colonics can be extremely beneficial if the proper measures are taken to strengthen gut wall and bind toxins.

    Mike--- BTW...ME/CFS patients should never fast and make sure to eat plenty of fats especially omega 6 such as Borage oil, with enzymes.
     
  12. alex3619

    alex3619 Senior Member

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    Hi Tammie,

    Not everyone on these lists has pure CFS or ME, so it is important when discussing treatments to be clear on what type of patient is being discussed. This helps clarify who might have problems, and whose prior experience is most applicable. I don't like to make presumptions, because what I am saying may not be applicable to a specific person.

    bye
    Alex
     
  13. alex3619

    alex3619 Senior Member

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    Hi Michael,

    I do not recall the details now but I do recall that many alternative health practitioners, and some biochemists, were saying that while borage oil has a high omega-6 GLA content than alternatives, there were other chemicals that caused problems in mamy patients and so they prefered evening primrose oil.

    I was aware of this theory about omega-6s in CFS back in 1989 when I first tried them. in 1993 I found a CFS doctor who was an expert on this - the world leader on this in his day - whose practice was only five minutes walk from my flat. (Dr. Andriya Martinovic; his paper with Grey is on PubMed, the other papers, published or unpublished are not found using PubMed.) Some of the original research on the desaturase enzymes, which brought much of this to light, was Australian from 1984.

    How our bodies respond to omega-6 fats could be a subject for a decades long study by a very large institute with a lot of funding, but they probably still wouldn't fully understand it. It is very complicated. The response is non linear. One day on 100mg of GLA you might respond really well, the next day crash with major flu-like symptoms. In my own case I took evening primrose oil for years - during those years my health kept getting worse. This is most likely to be caused by the interaction of critical enzymes and CFS symptoms. If your CFS is getting worse, so are these pathways.

    Here is why it is good. GLA bypasses the first step in essential fatty acid megabolite synthesis (delta-6-desaturase or D6D) providing absolutely essential substrate for the synthesis of both series 1 and 2 prostaglandings, as well as a lot of other hormones. D6D is highly affected by oxidative stress, and has an absolute requirement for reduced glutathione, both of which are problems in CFS. For this reason many of us have a deficiency in long chain omega-6 fats. GLA supplementation bypasses the rate limiting step. Hormones produced from these fats are also absolutely essential to the repair of the gastrointestinal tract, which is relevant to leaky gut etc.

    Now for the bad. Enzymes responsible for turning GLA into proinflammatory hormones are dynamically regulated. NOBODY has been able to reliably get good results from omega-6 fats without some problems for anything but the stricly short term. Dr. Barry Sears invented the Zone diet to control the enzymes because he couldn't get a consistent hormonal response out of high GLA oils. Now in CFS at least one of the enzymes required to convert GLA to series 2 prostaglandins etc, and hence proinflammatory hormones, is very active. So while we are often deficient in these substance, if we supply GLA we will also overuse it to make these inflammatory hormones, and risk inducing flu-like symptoms - or making existing symptoms worse. I currently believe we make too little of the long chain fat arachidonic acid, but use too much of it to create nasty hormones. Arachidonic acid release is also how alcohol poisoning kills people, which is why I think so many of us can't handle alcohol. Aside from all the nasty hormones the body makes with it if uncontrolled, it can trigger massive oxidative stress to the mitochondria.

    So how would you determine who can and can't take GLA? Probably by knowing if you can or can't drink alcohol. Even then I would keep the dose low.

    These arguements do not apply to omega-3 but that is another topic.

    As far as fasting is concerned, you are right that most CFSers do not do well on fasts. A small minority of patients do seem to do well on very short fasts (24 hours) according to Dr Martinovic. Mostly we just risk a major hypoglycaemic episode.

    Bye
    Alex

     
  14. Michael Dessin

    Michael Dessin Senior Member

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    Alex, interesting stuff....borage oil was just an example but yes eve primrose oil is very good as well, and yes must get a high quality and pure supplement.

    From someone who has pure ME, such as myself, omega 6 such as from beef, bacon or omega 6 oils gave me instant neurological benefits, which dont last long but are good while they last.

    I could not drink alcohol when I was taking omega 6 oil, and yes I took primrose as well. I think a lot of the alcohol intolerance comes from sulfite intolerance also. I could never drink red wine, still cant :(
     
  15. Tammie

    Tammie Senior Member

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    Micheal and Alex, I am crashing badly rt now so I can't really respond, but I wanted to thank you for your responses.....i did read them and they are helpful

    (& Alex, It is truly good not to make assumptions.....nice that you don't.....I just had wondered bc I thought everyone on here has ME/CFS, but you are very correct in your response)
     
  16. alex3619

    alex3619 Senior Member

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    Hi Michael

    Alcohol intolerance is most notable in patients who can't tolerate even very pure alcohols like vodka or quality scotch. I too have a much worse reaction to red wine, but I don't think its only sulfites (I have a relative who is sulfite intolerant) I think it is more about the amine content, but red wine is very complex so it could be a lot of things.

    If you had a worse reaction to alcohol when taking omega-6s then it fits with my model.

    I have looked closely at alchohol intolerance in myself. I get a short term worsening from red wine. I get a slow prolonged worsening of all symptoms from alcohol, regardless of source. The response is dependant on the quantity of alcohol taken. It is also a two stage response (three for red wine). The first stage is the worsening of symptoms, but some days later I get a switch to omega-6 deficiency symptoms. That is, initially I think the arichidonic acid burst worsens CFS symptoms, but induces a much worse deficiency which becomes apparent once the first stage wears off. The implication from this is that once the first stage dies down, that is a very good time to take omega-6 to restore the balance.

    Do you know the easiest way to stop someone dying from alcohol poisoning? Give them a drug that blocks arachidonic acid metabolism. I gave up on alcohol most of a decade ago.

    For the record, I was diagnosed with CFS (Holmes 88) but imo fulfill the CCC criteria for ME - almost nobody in Australia uses an ME definition, it is hard to be officially diagnosed.

    I have no doubt that omega-6s help. Do take them with omega-3 (something I suspect you are already doing ;-)) as these will help limit the negative effects. As I said, many of us are omega-6 deficient, and these create most of the hundreds of hormones essential to health and life (including the gut), I just worry the difference between helping us and hurting us is so small that even on a constant low dose there is constant risk.

    Most people get enough omega-6 from meat, but imo we need to be careful of organ meats and egg yolk. However, I suspect the increased protein is more of a help in meat.

    Yeah, and I love red wine with food. :-(

    Bye
    Alex

     

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