Help with ME

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Mandyspike, Apr 30, 2015.

  1. Mandyspike

    Mandyspike Active Member

    Hi Jim, how are you today? Hope you are still managing to clean around your home. I'm not doing too good at the moment Jim, I am suffering with absolutely chronic insomnia. I am truly at my wits end! I have had to resort to sleeping tablets which don't really help that much. Last week I went 4 consecutive nights without any sleep whatsoever. To be honest it's a condition I have had on and off since I was in my 30's and it's back with a vengeance!!
    Last night I had about an hours sleep and the worst thing is my husband and I are being taken out later for a meal which my daughter is very kindly treating us too I really don't want to go I feel so exhausted. We can't turn her down. I don't want to tell her about my problem because I know it would spoil her night and I don't want that.
    As far as ME/CFS is concerned I am having no other symptoms.
    It's been lovely here weather wise. We have had quite a few sunny days which are always appreciated.
    To answer your question from a while ago, no I have never been to the states. I haven't travelled much in my life to be honest with you. Whenever I have been away it has always been in Europe. I don't like flying. I don't know about you.
    I' going to fix lunch now Jim.
    Sorry to complain so much but thanks for listening.
    Keep well
    Mandy
  2. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- I am truly sorry to hear of your suffering from chronic insomnia. I have also struggled for many years with it too, mine is very minor in comparison though. I just finished half a course of antibiotics and feel SOOO much better already!!!

    The biggest thing I have noticed so far is my anxiety level. I have had very high anxiety since I was 13 years old and the antibiotic I took, cut it in half or more, in just a week!!:D:D:D I also have more energy, my flu-like symptoms are almost gone and I sleep better!!!:):):) It's very clear to me, that bad bacteria in the gut can cause very high levels of anxiety, as well as fatigue, flu-like symptoms and exhaustion.

    The antibiotic I took is called rifaximin and it only kills bacteria in the small intestine, where the levels of bacteria should be very low anyway. Rifaximin also doesn't get absorbed into the bloodstream, so the side effects are usually very mild, if any. We just got the biggest snow storm of the year-a blizzard!

    Over a foot (.30 meters) of snow must have fallen. I have never been on a airplane but I don't think I would like it very much. Never worry about complaining to me Mandy- I've got ears of iron!;):):D Best of luck getting the insomnia under control.
    Take care Mandy!.................... Jim
    Last edited: Mar 16, 2017
  3. Amechan

    Amechan Member

    Hi Jim and Mandy,

    First I want to thank you for your friendship and dedication to each other over since April 2015. I read your first 10 pages of posts - which enamored me for hours - and then skipped to the most recent 5 pages of posts. In doing so I was clued into the theory of Methylation and liver toxicity that you often mentioned, Jim. I appreciate you posting the links to the late Richard Konynenberg's talk in Sweden. I've been overwhelmed by an overload of information and don't really know how to process it all. This is one of the main reasons I am writing.

    I noticed over these few years that both of your quality of life had drastically improved and wanted to know more about the process of self healing and how you might approach it if you had to start over?

    I'd like to tell you a bit about my condition in hopes that either of you may be able to offer advice here or even give me private consultation on the phone?

    I am a 44 yo male living in Japan for close to 20 years and this comes with challenges in finding the right doctors. I was an 'over achiever' on tasks that I set my mind out to do. 3 years ago I was slightly overweight. 65kg and 165 cm (5feet 5 & 143 lbs.) I decided to tone up my body and exercise for a few years and gradually was able to convert fat in to some muscle tone by mostly swimming and sometimes weight lifting. This winter I worked extra hard at exclusively weight lifting and really noticed a change in my body. I was becoming happier with my self image. In late January I noticed that recover time (from working out 1 or 2 days a week) was taking more time. I wrote this off as being 'not motivated enough' and overrode what my body was telling me by purposefully working harder in the gym. I had my first crash (where I thought I might die because of lack of energy, light feeling in chest, pounding in chest, fast heart rate, anxiety and incredibly non refreshing sleep day after day, nausea, fast heart rate after eating, feeling dehydrated despite drinking ample water etc.) in early February. All of these symptoms we're and are not the real 'me' of just a few months prior-. Some process in my body seemed to suddenly 'break'. I've found this referred to as Post Exertion Malaise (PEM).

    It should be noted I had other ME/CFS symptoms prior to this such as occasional insomnia and becoming fatigued after a hard day at work from time to time- but I thought that was me just turning older- perhaps not drinking enough water- that kind of thing.

    I went to a Cardiologist. Results OK. (bloodwork, 24h monitor, ECG)
    I went to a couple of general doctors afterwards who took blood and found nothing major.

    I began to suspect some sort of hormonal issue possibly thyroid related but couldn't figure out if I was hyper or hypo thyroid because I had symptoms of both. Then somehow I found that thyroid issues and ME/CFS have overlapping symptoms.

    As yet, I am not officially diagnosed with ME/CFS from a medical practitioner. One doctor telling me nothing is wrong and that I should take an antidepressant. Which I don't plan to do because I don't see how it can resolve the problem?

    Fortunately, I've been able to take a few weeks off of work and staying at home has been a big help. I'm at a stage that I'm not sure if I can go back to work for fear of setting off a crash.

    How do I get my heart rate down- when I get fatigued, my heart rate seems to increase and incites anxiety. I have to stay in bed all the time. I'm afraid to exert myself because if I do, I feel like it'll be the last time I do. As a personality type- I am sensitive- and afraid to try anything with my body- such as taking pills, amino acids etc. This illness has made me reconsider my approach to relying almost exclusively on nutritional balance to better myself. I eat healthy, don't drink caffeinated things nor alcohol.

    My initial questions for you both based on your experience with this are:
    Can you help me to get well?
    Where do you recommend I start first? I understand Richard Konynenberg's research but I'd like to hear directly from people who have walked the path.
    Did you ever have any issues with your heart skipping beats, increased pulse rate, chest pounding, etc. from taking any of the supplements you did? In particular, glutathione but also other supplements?

    This may certainly be one of the longest threads posted! Any any case, please let me know your thoughts and I'm really looking forward to hearing from you both about how you navigated out of this illness.

    Dave
  4. ljimbo42

    ljimbo42 Active Member

    @Amechan

    Hi Dave- Thank you for the post. I have learned that dysfunctional methylation is not the root cause of symptoms, instead it is secondary to dysbiosis and intestinal hyper-permeability, also known as "leaky gut". A leaky gut is often caused by antibiotics causing "dysbiosis" or an overgrowth of bad bacteria in the gut, but it can also be caused by chronic use of ibuprofen, aleve (naproxen) and other NSAIDS.

    That's a really great question and I'm glad you asked it in that way, because with what I have learned, I would do it VERY, VERY, differently. I think it is crucial to start with a low carbohydrate diet, this is my foundation of treatment. After that was in place, I would start to add in antibiotic herbs like oil of oregano, cinnamon and berberine and see how well you tolerate them. Many people, myself included, have a flaring of symptoms from antibiotic herbs and find it very slow going with them. An alternative to the herbs is a specific antibiotic, that works great and has almost no side effects.

    Many people with cfs find that it comes on during a stressful time in there life, like after a car accident, a loss of a loved one, overworking, overtraining etc. It sounds like maybe your time in the gym could have been your "trigger" but not the underlying cause. Any kind of stress be it physical or mental, can worsen a leaky gut. What happens when the digestive tract becomes overly permeable (leaky gut), is that something called lipopolysaccharides (LPS) from bacteria in our digestive tract (gut), leak into the bloodstream and cause an immune system reaction. This immune system reaction to the LPS , I believe, is what causes all other symptoms. It can cause anxiety, from mild to devastating, various degrees of depression, fatigue, nausea, flu-like symptoms etc.

    Many people do have some degree of symptoms before they get full blown cfs, although some people get it after a long course of antibiotics or several courses that had no symptoms prior, even minor ones.

    There aren't any tests available to diagnose cfs.

    I was diagnosed with depression and an anxiety disorder for years, until one day I was talking to my therapist and telling her how tired I was all the time. She said that fatigue goes hand in hand with depression. I told her I'm not depressed, I'm actually really happy and I was! I was in a very good place in my life, very happy and yet still fatigued all the time. My therapist new about cfs and finally made the connection, that my fatigue was caused by cfs, not depression. Most conventional doctors don't believe a leaky gut exits but if you go to PUBMED (a resource for published medical papers that is widely used by doctors around the world) and type in "intestinal permeability" , you will see over 12,000 papers on it!

    Treating dysbiosis and leaky gut should lower your anxiety, it has mine, in a big way!:)

    I tried glutathione and it made me sick. I think the best place to start is with a diet that is designed to treat dysbiosis/sibo(small intestine bacterial overgrowth) and a leaky gut. Here is a link to the best diet going for these things. Probably the most important thing I can ask you to do, is listen to your body and make changes at your own pace. Let me know what you think :)..... All the best-Jim
  5. Mandyspike

    Mandyspike Active Member

    Hello Jim, that was some height of snow you had a while back. What's the weather like for you now?
    How have you been since we were last in contact?
    We have had glorious sunshine here in the UK for three days in a row. Now that in itself makes a girl feel great!!
    I have just returned from a yoga class. I just thought I would give it a go and I am really enjoying stretching my body like I never have before. I have been three times now and I think I will continue to go.
    My insomnia hasn't diminished at all. I am becoming very upset about it but alas there is not a lot that can be done.
    Apart from that Its great for me to be able to mention once again that I am experiencing no other symptoms regarding ME/CFS. I feel remarkably lucky I can tell you.
    I have had a really nice weekend. It was Mothering Sunday yesterday and I got taken out and wined and dined my my beautiful children. They spoil me so much. I love them to bits.
    I'm going to sit out in the sunshine for a while Jim. I think we are back to rain tomorrow.
    Take good care of yourself.
    Hi Amechan!!
    Mandy
  6. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- We're going to get another snow storm today and another 6-12" of snow! It won't be around very long though, in a couple of days it's going be 10c and stay like that for a while.:) I just finished the course of antibiotics I had and have improved a lot from them.

    I am now taking a fairly high dose of herbs, like oil of oregano and others, to make sure I get rid of this bacterial overgrowth in my gut for good!

    Good to hear somebody's getting some sun.:D Actually, we had a really nice day here yesterday, with a lot of sun and it was warm. I have never tried yoga, but I do like to stretch, it really helps with the aches and pains I get from fibromyalgia.

    It's great that you are still symptom free!:) I have at least a few hours every day now that I feel like I have almost fully recovered and I expect those hours to increase as I continue to treat this dysbiosis. Happy belated Mothering day! Your children must care about you deeply, which I'm sure you know, is a real gift. Your birthday is next month isn't it? How are the plans for your party coming along? All the best to you Mandy..... Jim
  7. Mandyspike

    Mandyspike Active Member

    Hello Jim, Well I am pleased to say we have had another couple of glorious day's. I have been very busy with one thing and another so I haven't really had chance to sit out in it.
    Along with a multitude of other things I have been busy making chicken and leek pies for ourselves and sending one off to my Granddaughters. That's another pie which my family really enjoy.
    Have I told you anything about my other half? He hasn't been a well man actually. In 2004 he had a brain tumour unfortunately. He isn't doing too bad but he is restricted to some degree of what he can do. Anyway what I am getting at is the fact that he has found himself a suitable little part time job. He works 4 hours Mon to Fri. The trouble is where his employment is there is no parking spaces whatsoever so I have to take him and collect him when he finishes. It does tend to restrict me a little as it is very tying, but he is enjoying it and that is the main thing. I just have to get myself into a new routine.
    Sounds to me like you are coming on leaps and bounds. Are you really feeling that you are fully recovered? Oh Jim I hope so, I really do. You so deserve to be symptom free. I will look forward to the day I hear that from you.
    Yes everything is going well regarding my 60th. Venue booked, invitations out and the dress is in my wardrobe waiting for it. It should be a good night. I just can't wait for all my friends and family to be together under one roof.
    A programme is about to begin now so I am going to chill out and watch it. It's called Save Money: Good Food. I hope it will give me a few tips on saving on my grocery bill.
    Have a lovely afternoon Jim
    Mandy
  8. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- It is just starting to warm up here, with a little sun. Monday and Tuesday it's suppose to be 24-25c! I love it!! I've always been a huge fan of warm weather, but this year it's even better because I feel so good!:D:cool: I love chicken pies, but I have never had one with leeks in it. I don't even know what leeks taste like. I've lived such a sheltered life.;) I'm glad to here your hubby is working part-time, that must lift his spirits some.

    I hear you when you talk about changing your routine. I have a very good routine that I have settled into, but if I need to change it for some reason or another, I get all twisted up with anxiety, and it's not fun. My health continues to improve.

    I finished the course of antibiotics I was taking and now am on a fairly high dose of antibiotic herbs, that are working fantastic!! I am so excited, this is going to be the best spring and summer I've seen in a long time.:) I am about 99% certain that I will become totally symptom free. My flu-like symptoms are less than 50% of what they use to be and often times they are 90-95% gone.

    I have times already when I do feel symptom free and those time keep getting longer and longer. It's not a matter of IF now, it's just a matter of when and I don't think it will be very long.:) Your birthday party sounds like it will surely be a day to remember!! Have a great day Mandy- Jim
  9. Amechan

    Amechan Member

    Hi Jim and Mandy,

    Thank you so much for taking the time to write that detailed response Jim. Mandy, If you have time, I'd love to hear your thoughts on where you had success as well.

    It's my 20th year in Japan- I'm originally from the US. This week we are finally seeing the blossoming of the cherry trees. Its a really beautiful sight and it means that spring is finally here. I'm looking forward to the warmth of the sun as winter just isn't my thing.

    I've poured myself into why I suddenly became sick and your theory of SIBO sounds really likely. My symptoms to varying degrees can be tracked back 8 to 10 months ago. At that time none of the symptoms (mild insomnia, bloating, hard stools, feeling slightly rundown) came across as red flags to me- I just thought I was getting older... In hindsight they certainly were related to what happened the first week of February (chronic fatigue, insomnia <read above post>). I now have self-determined my sickness began with and continues to be adrenal insufficiency with the root cause of SIBO and possibly over ingestion of carrot juice that affected my liver's hormone regulation. This all kind of makes sense when I piece it together.

    After looking at the link you sent along from siboinfo I wanted to know more about what you are eating and how you are preparing it. The antibiotics seem to be the magic bullet for helping you feel better initially. Is it correct to assume that I'll need to take antibiotics to get right again? I did notice that just by ingesting oregano herb in chicken that it set off a pretty bad reaction... (That had never happened to me before.)

    These days are a bit better than how I felt just a few short weeks ago. I'm able to work but it is difficult. I feel like internally there is something tugging away at my body's ability to effectively create energy for itself. - very similar to the feeling of not having eaten all day or having low blood sugar-. I'm not sure if I'll be able to maintain my job or not but I'm hopeful especially after having met you both.

    Happy Spring to you both and I'm looking forward to hearing from you!
    Dave
  10. ljimbo42

    ljimbo42 Active Member

    Hey Dave- It sounds really nice there in Japan, the blossoming of the cherry trees must be welcome sight.:) The weather here in New Hampshire (in the united states) is getting really nice too. It's only 1:00pm and it's already 75 degrees F or 24 Celsius, a very warm spring day. I too, am not a big fan of cold weather.

    I'm happy to hear that you made the connection of SIBO to your symptoms!

    I eat mostly meat, vegetables (except starchy ones like potatoes, etc.), huge amounts of olive oil, to make up for calories I don't get from carbs, cheese (aged), and usually one piece of fruit a day. Here is a link to the diet I am on, I got this from siboinfo.com. You will see different colored columns on the food guide. The best column to chose your food from is the one all the way to the left, the green one. It is the best diet going for sibo, but if you have problems with it, let me know. There is another diet that's not as restrictive, and still works well.

    If you had easy access to Rifaximin ( the #1 antibiotic for sibo) I would say that's the best way to go, but it doesn't sound like you do. I have found the 2 best herbs are berberine and oil of oregano. You could try to take one of those at a very low dose and see how you respond to it. That will tell you a lot about what you need to do to move forward.


    Those symptoms are very familiar to me.o_O:eek: My best understanding of them are what I mentioned in an earlier post. When toxins from the bad bacteria in our gut "leak" into our bloodstream, they activate the immune system. There are immune cells in the brain that become activated called "Microglia".

    When Microglia become activated it causes flu-like symptoms to varying degrees, most of all it causes fatigue. It is very similar to when we get the flu. It is not the flu virus that makes us feel sick, fatigued, wiped out, nauseous etc. It is our immune systems response to the flu virus that makes us feel sick and the same thing applies to the toxins- (lipopolysaccharides from bacteria), that leak into our bloodstream from sibo and a leaky gut. Does that make sense?

    There is one other thing I would like to rule out before assuming you have sibo as a cause of your leaky gut. NSAID's like ibuprofen and Aleve (naproxen) can also cause a leaky gut, if they are used often enough. Where you using nsaid's on a regular basis when you got sick?

    If you have any other questions Dave, feel free to ask. Enjoy the warm weather and the blossoming cherry trees there in Japan!:) Spring is a season of renewal!!;)
    Last edited: Apr 10, 2017
  11. Mandyspike

    Mandyspike Active Member

    Sorry you haven't heard from me for a while Jim. I"m suffering so badly with my sleep. As you know I have my party on Friday and if I feel like this, I won't enjoy it.
    When I feel better I will write a bit more.
    Keep well my friend
    Mandy
  12. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Not a problem.

    Take good care of yourself and I hope your sleeping problem improves very soon!:) Have a great time at your party!!.......... Jim
  13. Mandyspike

    Mandyspike Active Member

    Hello my friend. Well I am very pleased to be able to tell you this. My 60th birthday party could not have gone any better!!
    For a couple of day's before hand I simply had to go see my Doctor. I told her how I had been suffering quite a lot lately with chronic insomnia and she very kindly gave me strong sleeping aids,so thankfully I had a good sleep the night before my birthday. I will only take them if I really have to.
    Back to my party. We had a great surprise when my husband and I opened our front door to get in, which I thought would have been my sons car, only to be greeted with a big stretch limousine at the end of my driveway. My all time favourite song was blasting out from the Limo and all the neighbours watched on.
    All my family were stood on the sidewalk popping open bottles of Champagne, party poppers and everything were going off. As they were all singing Happy Birthday to me. I will in my life forget that moment.
    There was 15 of us in it in total. We were accommodated with bottles of Champagne on ice, even strawberries to put in the bottom of the glass. My kids had carefully selected all my favourite music and it was blasting out while we were singing along and sipping our drinks. We were driven all around the country side, the sun was shining and the young children were waving to all the passers by. They were having great fun. The whole interior of the vehicle had colour flashing lights. It was absolutely fantastic!!
    The whole evening was great and plenty of people turned up.
    About 90 people altogether. It was lovely looking round the room and to realise all these people who I love have come to share with me my special day, it was Fabulous!! I have been truly spoiled I can tell you.
    I feel so much better now that I have had a few nights sleep. I really don't like sleeping pills but needs must as I was becoming very run down. I got a water infection, cold sores and my mouth has been ulcerated. I haven't had a good time of it lately I can tell you.
    I am lay in my bed looking out of the window and it looks like the start of a glorious day. If the sunshine lasts, I will get my sun lounger in the garden so I can sit and have a read. I have had lots of bottles of wine given to me so I might take it in the garden with me whilst I read my book. Well, it would be cheeky not to wouldn't it?
    Let me know how you have been keeping Jim.
    I will get up now and make the most of the day.
    All the very best and have a great day
    Mandy