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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Weight Loss

Discussion in 'Gastrointestinal and Urinary' started by xlynx, Dec 29, 2009.

  1. xlynx

    xlynx Senior Member

    London, UK

    I am struggling to keep my weight on, where for some this may be a desired effect its becoming quite a problem for me. I am 6ft 4 and have gone from being 14.4 stone / 202 pounds to 10.5 stone / 147 pounds since being ill in 8 months and its still happening. Every day I get on the scales and I go down a little bit more despite eating as much as possible.

    I have introduced bacon in the morning and am eating animal fats where I can and just generally eating as much as I can get in me. I cant eat anymore.

    I have no more muscles or fat left to loose!

    Anyone else have this prob and any ways to put back on or just even stop from losing more! I am not taking any meds.

  2. blackbird

    blackbird caged.

    I'm a little shorter, and a little heavier, but heading the same way.

    I was sick for a few days a couple of weeks ago, and lost half a stone in about 5 days.
    Gained a little after that, but still slowly wasting away.
  3. Carter Burke

    Carter Burke Guest

    I think amino acids can help a lot.

    I put on about half a stone (which has remained steady) after adding 15g/day Branch Chain Amino Acids and 10g/day L-Glutamine. (I buy them in powder form from myprotein and take them throughout the day in 5g doses.)

    BCAAs and Glutamine are the amino acids you need for building and maintaining muscle - which is why bodybuilders use them - and interestingly they're almost always low in CFS. (I added them to my protocol because my muscle recovery from walking and things was too slow, so it was limiting my activity.)

    You could also try taking amino acid mixes - myprotein do one called EAA (essential amino acids).

    (For building muscle/mass, it's best to take amino acids with a good source of carbohydrates, as it helps deliver them to muscle tissue. I use rice cakes, but a weight gain formula from a sports supplements place might be better - they're usually just fine oats and dextrose and things.)

    I don't find fat makes me put on any additional weight at all. I use a lot of extra virgin olive oil though, as it's got a lot of calories and it's generally good for you.

    Probably indicates you're not digesting food/protein properly though. You could try adding digestive enzymes and Betaine HCL before meals, but I've not really experimented with these myself yet. Amino acids are basically protein in a much easier to digest and utilize form.

    I think rapid weight loss tends to be dehydrayion more than fat loss though. Not an area I know a great deal about but perhaps try adding more salt to the diet and drinking more water? Some PWCs find creatine useful - it helps keep cells hydrated, so people often put on a bit of mass taking it. I think BCAAs also help cells retain water. Worth researching.

    A lot of people in sports have a hard time gaining weight, so the usual advice is to eat smaller, regular meals, every 3 hours or so. Same sort of hypoglycemic diet they recommend for PWCs. And each meal should have a good balance of carbs, protein and fats. (Most of my meals are based around chicken, rice and olive oil.)
  4. Tony

    Tony Still working on it all..

    Melbourne, Australia
    If you have loose stools or fatty ones (they float) then it could well be a digestion issue. I'm also a weight loser and trying to put some back on. I seem to be stable now.

    The doc recommended Betaine HCL 650mg with the main protein meal of the day. It will break down the protein so you should absorb it better. Digestive enzymes may be another helper as they break down the fats and starches. If you get constipated then back off the betaine. For me, one or two per day is about right. Others have taken much more that.
    Amino acids could help too, as Carter has mentioned.
  5. What the others have said. Plus maybe you are sensitive to gluten and not aware of it? That can cause malabsorption. You could try going gluten free for awhile and see if that helps. There is also test to see if you have celiac disease.

    If you have problems digesting fats you can add lipase enzyme.

    The gut is a good place to start for this problem and for CFS in general, because it contains 80% of the immune system.

    Probiotics would be a good thing to add too.

    You could also add an appetite stimulant (there are various prescriptions for this).
  6. xlynx

    xlynx Senior Member

    London, UK
    Thank you all for great info,

    Rice cakes sounds good to me with my amino acids and myprotein is pretty reasonably priced. Can I ask you do you use white or brown rice cakes, I see white anything get such a bad name I avoid it generally.

    There is no question that I am not digesting food properly, I have got some major gut issues, candida and bacteria and parasite issues which I am trying to correct at the moment with my doc.

    I think ill give Betaine ago also.

    I am trying to be gluten free although it manages to sneak in every now and then, I am taking probiotics at the minute and have been looking into trying kefir at some stage.

    So many supplements to take my home smells like a pharmacy!
  7. Carter Burke

    Carter Burke Guest

    I use brown rice rice cakes.

    And if you were taking BCAAs (5g a time) I find about 4 rice cakes give you the right amount of carbs, although I think there may be better carb choices, like porridge oats perhaps. I sometimes worry that rice cakes aren't digested fast enough. So I often try to eat them 5-10 minutes before I take my shake.

    (btw - raw amino acids don't tend to dissolve well in water and don't taste too amazing! I often drink them with a straw, and take a good 1-2g Vitamin C to aid absorption.)

    My specialist sees a lot of people with hypochloridia (sp?) - low stomach acid basically. So some people need quite heafty doses of Betaine HCL to digest food properly. (I think the way to test is to see at what point you get acid indigestion, then take slightly less than that.)

    I think BCAAs and L-Glutamine are among my most helpful supplements tbh. I'm experimenting with Essential Amino Acids now, which are a lot like BCAAs with additional Lysine, Tryptophan, etc. I'm going into them slowly though as I seem to get a bit of a buzz even off smallish amounts.
  8. xlynx

    xlynx Senior Member

    London, UK
    Hi Carter,

    Thanks for explanation as a big stress with all these things is working out a good way to take it.

    lol another amazing tasting item to add, my diet never tasted so bad :)

    Are you taking 5g a day and is that reasonably safe for me to start at that amount, did you see any adverse reactions? Sorry to get so detailed just my body is so damned sensitive.

    thanks again!
  9. Carter Burke

    Carter Burke Guest

    No probs!

    I'm always really cautious with anything new. (Although you will be getting some BCAAs and Glutamine from things like chicken anyway.)

    I started out with a tiny bit on the end of a teaspoon, I think! I like to make sure these things aren't going to have negative effects.

    I space them like this:

    First thing: 5g BCAAs; 5g L-Glutamine; 1-2g Vitamin C

    Midday: 5g L-Glutamine; 1-2g Vitamin C

    Late night: 5g BCAAs; 5g L-Glutamine; 1-2g Vitamin C

    Should be safe. They're not stimulating supplements. BCAAs (taken with carbs) should go straight to the muscles, helping with protein synthesis and recovery. L-Glutamine does a lot of positive things in the body, like repairing the gut, immune system, supporting muscle tissue, stimulating growth hormone (which is also typically low in CFS).

    They're pretty standard doses for athletes/bodybuilders - although some take MUCH more. I often think a CFS patient has similar dietry and rest requirements to a bodybuilder. When you're getting aching legs, whether it's from pressing 1000lbs or walking for 2 minutes, it's still the same thing, physiologically (at least to the best of my understanding).

    It took quite a few months for the BCAAs and Glutamine to really improve the muscle soreness and recovery, but the weight gain and increased activity were quite instant.

    I always take my amino acids separately from any other protein btw, to improve absorption. I don't know whether it's conceivable you could get amino acid imbalances in the long-run. I'm experimenting with EAAs now, but I'm a little more cautious with them as they have some amino acids which can be quite stimulating.
  10. xlynx

    xlynx Senior Member

    London, UK
    I am impressed with your 3 - 6g Vit c in a day. That might be a challenge for me as I take 600mg magnesium also and that will be me in the loo but I am sure I could work up to it.

    I have got a multivitamin supplement i take with some amino acids in it already and your right it is a slightly stimulating:

    L-Alanine 300 mg
    L-Arginine 145 mg
    L-Aspartic Acid 665 mg
    L-Cystine 65 mg
    L-Glutamic Acid 1,090 mg
    Glycine 500 mg
    L-Histidine 105 mg
    L-Isoleucine 350 mg
    L-Leucine 630 mg
    L-Lysine 550 mg
    L-Methionine 125 mg
    L-Phenylalanine 180 mg
    L-Proline 385 mg
    L-Serine 540 mg
    Taurine 500 mg
    L-Threonine 415 mg
    L-tryptophan 115 mg
    L-Tyrosine 525 mg
    L-Valine 340 mg
  11. Carter Burke

    Carter Burke Guest

    Ahh that look quite complete! I think it's the L-Phenylalanine and L-Tyrosine which are stimulating for me.

    So yeah you're basically upping your Glutamine, Valine, Leucine and Isoleucine when taking BCAAs and Glutamine. (The few studies I've seen, you seem to need at least 10g/day Glutamine to see an improvement. I'm not aware of BCAA supplementation ever being tested with CFS, but I've seen they tend to read low on blood tests.)

    I wonder if you're losing weight quite rapidly could it be that you've picked up a gut parasite somewhere? Haven't been on holiday anywhere like South America or Africa?
  12. xlynx

    xlynx Senior Member

    London, UK
    Its very possible I have a gut parasite as I am suffering seriously with my intestines there is definitely something wrong. I am waiting for stool test with parasites but takes 3 weeks for results.

    Since I have started to take an antifungal (caprylic acid) things have got really bad for me even though its been a month on it.

    I wonder sometimes if by removing the fungal issue I am replacing it with more parasites or something along those lines as I dont know what could be causing me so many problems. I was actually healing well before starting anti fungals now I am bed bound again for a month.

    I was living in Spain when I got ill but I never drank the water there but you never know. I am not entirely sure how you catch parasites either.

    However I was on a PPI (stomach reducing acid tablets) for two years for a hernia and had food poisoning about 4 times in a year before I got cfs so I think healing my gut is a big part of my journey.

    I have been thinking about adding Oregano complex as apparently its good for the gut and parasites. You once mentioned that before, did you get on well with Oregano?
  13. Carter Burke

    Carter Burke Guest

    Ahh, good you're getting that tested. Funnily enough I was on antacids shortly before my health started going downhill.

    Was it for a hiatal hernia then?

    I've not heard ANY CFS specialists make this connection, but I've long suspected hiatal hernia and CFS may be very closely linked. There's only a few books on this, and they don't seem to have much mainstream acceptance, but Ted Baroody's "Hiatal Hernia Syndrome" puts a sliding/transient HH as the cause of all sorts of illnesses, from heart disease to adrenal fatigue to asthma and cancer. (It's the only book which explains the tachycardia and skipped heartbeats I used to get which seemed connected to digestive issues. Idea is the hiatal hernia interferes with the vagus nerve and crowds the heart and lung space. Also means food's poorly digested... I was also on an anxiety board some years ago and noticed maybe 80% of the people there had unexplained skipped heartbeats and many had hiatal hernias too, but had never made the connection.)

    Yeah, caprylic acid seemed quite well tolerated. Oregano oil I never noticed much from. I think high-strength probiotics (VSL#3) might have given me more of a herx-like reaction than either of those, but then it's hard to say for sure.

    I generally eat a lot of garlic and use quite a bit of coconut milk in cooking now, as well as avoiding yeast and sugar, but I'm not sure how much of a problem candida's ever been for me. I think L-Glutamine's helped my digestive issues though. And probably getting the diet tight.
  14. Frank

    Frank Senior Member

    xlynx i struggle with the underweight issue, i'm trying the mentioned things here:

    -betaine HCL before a meal
    -Repair gut, with L-glutamine and other supplements (studies by prof.Maes)
    -Use digestive enzymes
    -try to avoid fillers or non-foods (with no nutrional value)
  15. xlynx

    xlynx Senior Member

    London, UK
    Hey Carter,

    Yeah I have a hiatal hernia, I also get palpitations with digestive issues at the same time and this bothered me for ages, I was also searching for solutions for a connection and found the same thing you suggest about crowding the vegas nerve etc.

    Sliding HH and Vagus Nerve is one possibility another is Dr Cheney suggesting that the palpitations are because of fatigued heart muscles and low blood volume and that shuts down blood supply to the gut which causes digestive issues.

    However I had the HH for 2 years pre cfs and had no palpitations and lots of digestive issues.

    Alot of people have sliding HH especially over 50s and most dont have any issues with palpitations or much else other than some reflux.

    Do you get palpitations and digestive issues simultaneously? I mean as soon as I get palps I start belching and then I can get breathing difficulties on top of that!

    My aunt also had HH and then developed cfs after 1 year of antacids. The good news is she is 95% free of cfs after 10 years and no more HH digestive probs or palps either.


    Hey s5044726,

    Yeah this underweight issue is getting out of hand I look like a twig :)

    What digestive enzymes do you use?
  16. Carter Burke

    Carter Burke Guest

    Yeah I used to get two sorts of heartbeat issue.

    The first I used to get was little episodes where my heart would skip a beat, but it was always a very noticeable sensation. It felt like my heart actually rolled over, and there'd often be a nerve sensation with it - like a feeling in my fingertips.

    At first I thought it was just skipped beats, but I eventually made the connection with digestive symptoms. The skipped beat would sometimes also coincide with a belch - or pre-belching sensation. (I also eventually noticed times where I'd get a skipped beat, or PVC, without any accompanying sensation - so you'd only know you had it if you were monitoring the heart.)

    I'd get those more when I was getting over viruses or dealing with stress in general. And general anxiety often accompanies those periods.

    The other one would be where I'd wake up and belch and then my heart would suddenly start beating at 180 or so, and stay like that for an hour.

    The "steak house syndrome", where people over eat and get pseudo-heart attacks. Except mine often coincided with bad viruses. And sometimes I'd get very breathless with movements which provoked my HH.

    My CFS developed some years later. As I've got better, and been addressing nutritional issues, both those symptoms and my anxiety have gone right down.

    Baroody's book has some good techniques for getting the HH down. Such as manual adjustment (which I find difficult) and drinking warm water and jumping off a chair!

    One of the most effective for me is simply relaxing at a 45 degree angle and using the heat of my hands around the HH region to relax it into place. Sometimes that causes a lot of belching.

    Baroody's idea is that you aim to keep your HH down as much as possible, take enzymes and Betaine HCL, take nutrients to make up for poor absorption, build strength in the supporting muscles and de-stress. (As stress is thought to bring the HH up.)

    I could easily believe many CFS cases were caused by HH. You'll get nutritional deficiencies and unexplained nervous system symptoms. Fatigue follows. Strangest thing is how common HH's seem to be with us lot, and how few people notice that.
  17. Frank

    Frank Senior Member

    All of them :D. No, i tend to vary.
  18. velha508


    I too am having 'unexplained' weight loss. 20 lbs in 5 months. I lost a lot at first, then held steady for a while and am now losing again.

    I take Now brand 'Optimal enzymes' and they seem to help - my stool analysis showed sufficient enzymes but my weight loss tells another story. I've been trying betaineHCl and my stool looks more digested...

    I went and bought some BCAA today to try - thanks to all for this thread and the suggestions. Please report back if you find something in particular helped you...
  19. xlynx

    xlynx Senior Member

    London, UK
    Hey Carter,

    Yeah I have tried jumping off a chair before many times and running down stairs (pre cfs of course).

    Ill try Baroodys book, not read one on HH before.

    btw have you ever woken up dizzy from acid reflux? I have not seen it written anywhere but have a feeling that might cause it.

    In the meantime I have seriously increased my food intake, lets hope that works :)
  20. Carter Burke

    Carter Burke Guest

    Dizziness used to be a common symptom for me. I think just pre-CFS I had connected it with reflux/digestive issues, which had lead me to think I might have a problem with candida.

    I'm pretty sure Baroody's book connects HH and dizziness too.

    The best technique I found for my HH is simply warming my hands up and placing them over the HH region (sort of to the lower left of the solar plexus, around the heart area - sort of starting high and slowly going down), whilst lying back at a 45 degree angle and relaxing; breathing softly into the abdomen. You can sort of relax the stomach down. His manual correction of HH never seemed to work so well for me.

    Baroody also talks of a certain chronic virus which causes the stomach to ascend quite regularly and causes all sorts of problems, and again, that's exactly how I've experienced it. I'd get over a bad virus then the weird digestive-related symptoms would start up again. Sometimes sudden breathlessness when trying to get dressed, or even moving in bed; tachycardia in the night; weird skipped beats; sometimes phases of chronic belching; POTS to near-fainting; I think my hyperventilation syndrome could've been connected too.

    I still think supplements have had the biggest overall effect. Possibly because I wasn't absorbing the right things and there might have been some vicious circle there. I wonder if magnesium's very important in keeping a sliding HH down as it's a muscle relaxant? I've not really had so many HH symptoms lately. Actually Baroody recommends epsom salt baths if I remember right. And saunas too, I think.

    Baroody recommended taking as much Betain HCL as you can handle too. Think he's absolutely right there. It's probably critical for digesting food and absorbing nutrients properly in people with this condition.

    It's odd because Baroody's website looks a little new age, and not the kind of thing I'd normally be too interested in, but his theories on HH as a syndrome so perfectly describe my whole symptoms list and my progression and recovery.

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