New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Amoebas anyone?

Discussion in 'General ME/CFS Discussion' started by Nickster, Jul 5, 2017.

?

Amoebas anyone

  1. Yes

    5 vote(s)
    35.7%
  2. No

    9 vote(s)
    64.3%
Multiple votes are allowed.
  1. Nickster

    Nickster Senior Member

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    Just taking a poll if anyone has had an amoeba?
    My son had one early on in his sickness after traveling from Southeast Asia and thought that it was eliminated with drugs.
     
    Last edited: Jul 5, 2017
  2. Sushi

    Sushi Senior Member Albuquerque

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    Yes, many times as I used to travel to India frequently. I also took drugs that hopefully knocked them on their little asses, but still, I recently tried some alternative parasite remedies and did feel better. So, who knows, they may be very hardy little critters that continue to shadow our lives.
     
    Nickster likes this.
  3. Art Vandelay

    Art Vandelay Senior Member

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    Which one did he have? I've tested positive to Dientamoeba fragilis as discussed in this thread here: http://forums.phoenixrising.me/index.php?threads/could-this-be-a-parasite-warning-long-post.48377/

    Research and a discussion with my doctor have convinced me that it may be a significant factor in my ME/CFS and I am wondering how to treat it.
     
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  4. jason30

    jason30 Senior Member

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  5. Art Vandelay

    Art Vandelay Senior Member

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    I will be very interested to hear how you go on the Humaworm @jason30 if you decide to try it. I tried a similar product many years ago which helped improve my symptoms but unfortunately did not clear the infection. I hope something works for you.
     
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  6. JayneM

    JayneM

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    The primary cause of my ME/cfs was an acute bout of glandular fever however, I got significantly worse after travelling to Thailand and getting food poisoning. All of my doctors thought I'd picked up some sort of amoeba and I had a lot of courses of metronidazole, mebendazole, doxycycline etc and never really felt that i got rid of it until I had a couple of courses of ivermectin (stromectol).

    Is your son still affected by it or is he doing better now?
     
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  7. Nickster

    Nickster Senior Member

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    My son has gotten worse over the course of 2 years. He has taken several antivirals, but, I don't think he took ivermectin. How are you doing today? What are your symptoms now?
    I hope you are doing better.
     
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  8. JayneM

    JayneM

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    Sorry to hear that. I hope like me, with persistence, lots of rest, trying treatments and seeking answers that he starts to improve again in time.

    Do you know what amoeba he has/had?

    I was bedbound/housebound for 3 years up until 2 years ago (I've had ME/CFS for 10+ years) and now I'm at the point where I can hold down a part-time job working from home, perform basic cooking/cleaning, socialise for a couple of hours on the weekend and basically hover between moderate to mild.

    So a big improvement and I feel like in time I'll continue to improve. Once I took the Ivermectin I felt like I had finally gotten rid of whatever amoeba was bugging me and I crossed another hurdle so to speak, taking me up another level of functioning.

    I personally found Ivermectin to be the most beneficial thing for me and less harsh than the other abx I tried but it was all necessary. Apart from that I found a GAPS diet helpful. Hard at first, but I was at the point where I had extreme post-infectious IBS from the amoeba and couldn't tolerate most foods anyway. Building the integrity of my gut was a great help through diet, probiotics (VSL#3, Mutaflor, Prescript Assist and Saccromyces Boulardii)I also had a fecal transplant and did probiotic enemas. Slippery elm powder also helped.

    Also addressing methylation defects and increasing micronutrients was a great help. As was amino acid supplementation.

    In terms of symptoms now, I have a near normal functioning digestive system and can generally avoid IBS attacks provided I stay away from dairy and other known food intolerances. Not going to the bathroom between 20 - 25x per day anymore. Digestive tract feels strong, no longer weak like it's sitting in liquid...hard to explain that feeling. Still get a bit of bloating, and mainly fatigue/fibromyalgia pain. Still get PEM but not as bad provided I don't overdo it. Occasional brain fog but no longer feel like I'm losing homeostasis.

    Antivirals along with Celebrex is next on my list to try. Hope my story lifts his spirits (and yours) a bit. It's a hard slog emotionally and financially but I also know a couple of other long-term sufferers and we've all improved over time.
     
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  9. JayneM

    JayneM

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    Also Ann I'm 30 yrs old so not far off your son's age and I found my mid 20's to be the toughest but I've gotten through. I'm even looking at starting a family with my husband (got my specialists approval) so that gives you another idea of just how much better I am. Keep the hope going and when your son starts to improve please tell him that he's more than welcome to message me. Always good to talk to someone of a similar age who has had a similar experience.Hope you are looking after yourself also.
     
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  10. Nickster

    Nickster Senior Member

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    Nick had entamoeba histolytica. He took an antiviral and when he was retested it showed that it was gone, but, that was 2 years ago. He has been just about bedridden for about 10 months. He has sensitivities to food, sound, light, smells and has pain in his nerves and cognitive and neurological issues. He says the symptoms usually start when his lower intestine starts to move and than something gets released and than he gets burning everywhere and his liver hurts. This has been such a devastating illness.

    You give me hope with your journey! I am so happy for you that you were able to come out of that dark place and are living your life. I so appreciate you reaching out and sharing your story with me!
    Ann
     
    Last edited: Jul 11, 2017
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  11. JayneM

    JayneM

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    I'm familiar with Entomoeba Histolytica and knew of someone who went to the Centre for Digestive Diseases in Five Dock, Sydney, Australia. They've got protocols (I think) for certain parasitic infections such as Entomoeba Histolytica, Diebtomoeba Fragilis and Blastocystis Hominis. Pretty sure they consult with international patients if you need it, although it sounds like you've already found someone knowledgeable.

    They are notoriously difficult to get rid of and treat, and tend to take a bit of time to recover from. Might be worthwhile testing again to make sure he still isn't positive for it. Sometimes doctors test too quickly after treatment and then the patient finds out that they still have it a year later.

    I feel for Nick, I remember those symptoms all too well and it's hard to imagine recovering when you are that sick. Keep persisting, don't give up and make sure the medical professionals that are treating Nick are taking him and you seriously.

    My message to Nick is it's never too late to rebuild your life. I was out of work for 3 years while bedbound, and nearly lost everything, but look at where I'm at now.

    Once he's on the road to recovery no matter how long that takes, keep looking forward and in time he will learn to trust his body again and not feel like it's working against him.

    Get help to deal with the frustration this disease brings if he needs it (and you also) and tell him to not be scared to have dreams. Read some of the positive sentiments in the research that has come out and take comfort in the fact that we now have so many intelligent scientists that will hopefully have treatments for us within the next 5-10 years. If I can get this far, there's nothing to say Nick can't either.
     
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  12. Nickster

    Nickster Senior Member

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    Jayne, your story and relating to this illness (as most have no idea about it) gives me a feeling of reassurance, encouragement and comfort.

    Just a few questions on getting thru the day to day during that 3 year dark time:

    Did you have helpers? My son is resistant to outside help
    How did you try new treatments with the sensitivities?
    While being bedbound, how where you able to see medical doctors?
    Anything you recommend to get thru the day?

    You give me hope to see you come thru the other side.

    Thank you so much for reaching out to me it's as if you thru me a life preserver.

    Ann
     
    Last edited: Jul 11, 2017
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  13. JayneM

    JayneM

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    I'm glad I can be of some help and give you some hope. I remember how fearful my parents were watching me decline and become so sick, so I'm glad to give you some reassurance.

    Answers to your questions:

    - I didn't have any outside help and only had help from my parents and then boyfriend. Mainly because it took so long to get a diagnosis and because it's hard to get governmental assistance here for these types of conditions. Also like Nick I was extremely resistant and quite stubborn. This was a mistake. I think I would have refused help anyway because being in my 20's that loss of independence was terrifying, I was also embarrassed and I just couldn't emotionally accept that I was disabled. My advice to you and Nick is if you can get outside help -please take it. It will reduce some of the burden on you but also means by handing over the reigns to someone else, Nick can focus more on getting himself through this. Please tell Nick that accepting help doesn't mean that he's giving up and doesn't mean he will be stuck like this forever, it's more about acknowledging where he's at and that he can't start healing while he is trying to push through. It's counter productive. He needs to respect this disease and by doing less physically now he will hopefully be able to do more in the future - rest is crucial.

    - My motto is to be open and try everything provided it won't injure me or cause more damage to me. Lots of research from valid sources before trying things. The prospect of dealing with die off symptoms was scary because we spend so much time trying to avoid anything that might make us feel physically worse but the reality is - most of us need assistance through treatments to get better. I basically accepted that I would probably feel unwell at times. Recovery from this isn't perfectly linear. Even if I had setbacks I'd focus on the fact that my overall trajectory was still moving towards improvements and healing. This is an extremely slow process but don't give up. Accept that he may try something now and it might not work but be open to revisiting in the future as it might help then. Formulate a plan of attack. I started with killing off the parasite. It made sense to me because how could I start healing when I had something inside me that was wreaking so much havoc? Don't bother with bandaid solutions, you must methodically address the sources. Start slow with some things and full doses with other things. For me personally, getting rid of the parasite required full doses but protect the gut as much as possible with probiotics at the same time. What treatments you guys try and at what dose is completely up to you and your doctors.

    - That was a massive struggle. I arranged some Skype sessions after the initial consultation but pretty much in Aus they want to see you face-to-face. I'd encourage Nick to use a wheelchair as an aid when he needs to see doctors. He must take some of the physical burden off himself. I basically laid down in the car. Took frequent rest breaks to get into the doctors office, and my dad helped prop me up. I'd also lay down while I was speaking to doctors. Most could see I was extremely sick and struggling so didn't object. I also made it clear to my parents what I wanted and the questions I had so they could speak for me if need be. Use aids like sunglasses and earplugs to help with the sensitivity to light and sound. Should I have left the house - no, but in my case there was no choice. I pretty much knew I'd feel awful and just tried to accept that I needed to put up with it because I was seeing a person who might help. Tried to space appointments out as much as possible and pep talks from my loved ones would help get me through.

    - Minimise stress and keep the environment as calm as possible at all times. Make sure Nick isn't watching/listening to the news or reading negative stories about other sufferers. All this does is add to the despair and hopelessness. If he can watch some TV I'd suggest relaxing documentaries, comedies or even cartoons. Benign things that will distract his brain from focusing on his symptoms for short periods of time. Lots of pacing and routine. Guided healing meditations on YouTube. Using earplugs when sleeping to block out noise if he needs it. Making sure at home that you talk to him about the things he can start doing once he starts getting better (even if only small) and lots of positive self talk. I found when my parents were worried it would worry me more. Adopting a warrior mindset I found that looking at this disease like I was training for a marathon kept me focussed on getting well and helped me to accept that it would take a lot of time. Crying when needing a bit of emotional release and being surrounded by people who understood I have a real physical disease that would just check in with me and simply saying "you're doing the best you can and where you're at is ok" or "I hope you are feeling a bit better soon." Short visits with friends and get them to come to you. Having a pet to snuggle up to. Good nutrition and staying hydrated - regular mealtimes. Read stories of those who've recovered and find commonalities that he can try - researching gave me back a bit of control and helped me feel like I was doing something to help myself.

    Also Ann I've regained the 10kg I lost when bed bound - some more positivity for you :)

    Sorry for the essay!! Hope this helps.
     
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  14. JayneM

    JayneM

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    Also Ann I've got a Fitbit which has helped me determine how much movement I can do without flaring up or crashing, and tracks my heart rate so I know when I need to stop what I'm doing or ease up. Getting out of that push/crash cycle is important.

    I've found deep breathing helpful but while I had the amoeba this was difficult to do and I often held my breath without realising it. Getting the nervous system to calm down and not be so intense with the fight or flight response was helpful. Keep a medical records folder as this journey can be long and it's helpful to specialists to have everything they need in the one spot. Also provides physical evidence that can be looked at in the future to show Nick that he's improving.

    Sorry for hijacking this thread folks! I wish all of you trying to get rid of amoebas the best!
     
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  15. Nickster

    Nickster Senior Member

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    Oh thank you so much for the detailed answers. It gives me such insight into his views and feelings.

    You have truly helped me at a time when it seems so dark.

    Thank you for the encouragement and positivity!

    Ann
     
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  16. JayneM

    JayneM

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    You're welcome Ann, glad I can be of some help.

    One last thing I'll say is that I've noticed when I've chatted to a couple of my male friends who have either fought parasites or are dealing with ME/CFS, they struggle with the stigma of having invisible chronic illnesses and society's expectations that males should be strong, providers, virile etc, and aren't freely able to talk about their feelings for fear of judgement. Signs he's struggling might be moodiness, being withdrawn or angry. Might be good to have a male role model/health professional who's encouraging and supportive around if you think he needs it.

    Best wishes to you both and feel free to message me if you need anything.
     
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