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Hoping someone can give me some advice with remaining symptoms

Discussion in 'General ME/CFS Discussion' started by tdog333, Jul 7, 2015.

  1. tdog333

    tdog333 Senior Member

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    Hey all, I've been on this forum for a couple years now and have REALLY benefited from all the advice here. I have had some amazing health changes for the better from following a lot of protocols on here. I've tried almost everything I've come across on here, but I know it's never ending and there is always something new to try.

    I've seen countless doctors as I know everyone here has, and tried hundred of herbs and lots of prescriptions. I still have some lingering symptoms that I cannot figure out so I'm hoping someone here can help me out.

    The main symptom I'm having is chronic nausea and slow stomach emptying. I also get colon pain/flare ups if I eat outside of "safe foods" (my diet is the exact same every day, bacon, eggs, avocado, cashews, pure blueberry or cherry juice, nothing else)

    The nausea comes on about 10-15 minutes after I finish eating, and feels very uncomfortable, like i could throw up if I wanted to, but i always hold it back. The only thing that has helped me has been peppermint drops and peppermint oil, but I have to keep taking them every 20 minutes until the food has left my stomach. After the meal has left my stomach, the nausea completely dissapears and I feel just fine, the cycle repeats over and over, I've lost over 100 pounds because it's hard to eat(and I didn't have much weight to lose)

    The food leaves very slowly too(it's pretty random but always takes at least 4 hours for a regular size meal- a big meal has taken over 14 hours to leave before), I've been with a friend, eaten the exact same meal, he's hungry 2 hours later and I am completely stuffed and bloated. Before CFS and before my health went downhill I remember I used to be the same way, I could eat anything with no problems and was always hungry.

    I also get headaches that seem to come on once I start eating, but will also come on randomly, it is generally when I eat though. Fioricet will get rid of them but I try not to use it because of rebound headaches.

    I also have muscle spasms/twiches all day long all over my body, they aren't major but they are very noticeable.

    I get chest pain too sometimes, it is much worse if I don't take d-ribose. It feels like someone is squishing my heart really hard, and I can't get enough breath sometimes. I had a echo done and the results were:
    Left ventricular ejection fraction 60, mild septal hypokinesis, trivial valvular regurgitation, so nothing major it seems.

    I just hope someone can help me out, I've searched and searched these forums and am hoping this new drug (nicorandil) will be of some help. Any suggestions are welcome.
    Thanks!
     
  2. *GG*

    *GG* Senior Member

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    Have you heard of Dry Needling, it might help with the twitching muscles? Do your muscles get bunched up/knotted? I think they call them trigger points.

    GG
     
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  3. ahmo

    ahmo Senior Member

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    Nausea + headaches could be liver. Chanca piedra is a herb which I've had excellent results with for gall bladder, liver, kidney issues. But what I rely on for liver/adrenal/gall bladder health is coffee enemas. I've osted a blog about it, linked in my signature.

    Muscle spasms and twitches often related to low magnesium or, sometimes, potassium. The heart stuff could be potassium, though it disappearing with ribose makes potassium less likely. Hope you get the answers you need.
     
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  4. WoolPippi

    WoolPippi Senior Member

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    hi,
    I recognize your eating symptoms as low stomach acid. I mean: not acid enough. Food has to stay longer in the stomach to be broken down and the duodenum doesn't receive it well because it is not acid enough (it then refuses to let it enter for many hours and when it does it won't release enough bile for proper uptake of nutrients).

    Taking HCL or lemon juice or diluted vinegar with your food might help. It does me. Just try out if you can make the nausea disappear. And what happens with the rest of the process in your body when that happens.

    Not enough acidity can easily be caused by not enough cortisol hormones and you (and I) being ill for a long time has taken its toll on the glands that produce this anti-prolonged-stress hormone. So it would be a logical connection.

    Your peppermint remedy supports a not-enough-stomach-acid theory. Peppermint relaxes the muscles and stimulates bile (without aiding to the acidity). So while the problem (of the acidity) is not solved it does aid with digestion (via bile) but it also prolonges digestion by relaxing the muscles of the stomach walls, making your food stay longer in the stomach.

    As you're willing to take peppermint oil for nausea I advocate swapping it for lemon juice or diluted vinegar for once, to try it out. (don't swish it around your teeth though, just gulp it to the back. You like your enamel.)

    I really like your diet :thumbsup:
    Does the bacon has animal fat on it or perhaps you bake it in some full fat butter? Otherwise your main fat intake comes from avocado and you could do with some other form of full saturated fats. (just my 2 cents, I live on egg yokes, full fat butter, chicken broth, dark chocolate, cashews and the occasional "roast beef sushi" being a thin slice of roast beef with wasabi, full fat butter, ginger and salt)

    (Runny) egg yokes are the best foods around! (if you ask me). But I have noticed that hard boiled egg white is not digestable at all, it seems. The protein structure is so changed that the body has no tools to break it down in its amino acids, is my theory.

    I once laid hard boiled egg whites outdoors, to donate to animals (hedgehogs and birds and such) but it was not touched for a week. Not even by bugs which usually do all the animal product cleaning up around here. This confirms my conspirac... I mean working theory: If nothing in nature wants it, my body probably cannot handle it either. :cautious:

    I now donate my egg whites to the bin and eat only the egg yokes. I love it! but can only handle 2 at a time, they are such powerhouses of nutrients. 2 egg yokes, bit of butter, 324 mg of HCL and that's breakfast/lunch.
     
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  5. WoolPippi

    WoolPippi Senior Member

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    I wonder about the head aches: what kind of bacon do you eat?

    if it's grilled it may contain those difficult molecules that the body has a hard time detoxing. They are extra long molecules and contain some difficult elements.
    They can function as neuro transmitters and influence brain chemistry which is why I triggered upon your head ache.
    It's the molecules that occur when meat is glazed or when it's BBQ'ed. The meat doesn't have to be black although that's a sure way to get them. They also occur in melasse. I'm sorry, the last post took all my energy, I cannot provide the source or more info at the time.

    over here bacon often contains lots of additives that'll drive my brain nuts but you've probably got a good wholesome source.
     
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  6. tdog333

    tdog333 Senior Member

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    thanks for the posts! I have had my mg and potassium levels checked, they are both on the "normal" range but that doesn't always tell the full story. I eat the paleo bacon which has no additives or nitrates added, but the headaches seem to come on with just about any source of food:(

    I have tried betaine for more stomach acid but it has not done anything for me, I read that you are supposed to take more and more until you feel it burn but I got to 18 pills with no burning, I will try it again though for sure thanks!

    I've never heard of dry needling but my muscles do get tight especially in my back and neck

    I have had high liver counts before, I will try the piedra, and try coffee enemas too
     
  7. AnnaDove

    AnnaDove

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    @tdog333, Your symptoms sound very much like mine in 2008. I would suggest that you find a gastro doctor who specializes in pancreatic insufficiency. A regular gastro doctor probably would not recognize it - at least the ones I saw did not. I was so weak by the time I saw my doctor that my son had to guide me and help me talk to him. Thank God I found him. He saved my life. Today, I have to take pancreatic enzymes with every bite of food I eat. I have a very limited diet like you.
     
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  8. tdog333

    tdog333 Senior Member

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    Thanks for that post! Do you remember anything he did to help or any testing he did? I too have to take digestive enzymes but I have not ever tried pancreatic enzymes specifically, I think I need to look into that more cause I never really have.
     
  9. AnnaDove

    AnnaDove

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    The Atlanta Gastro System has many clinics. I had already been to two of them and had a colonoscopy and endoscopy done. Also stool tests and other tests with primary care doc. They showed nothing. I found this doctor through Emory Hospital. He works at the Gastro Clinic at Emory Crawford Long Hosp. He quickly over a few days ran a few other tests and diagnosed me with pancreatic insufficiency. The first time I saw him he told his nurse to give me all their samples of the strongest enzymes. I was very weak and dropping weight fast. He knows his stuff. That's why I say be careful to get a gastro who knows the pancreas.
     
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  10. tdog333

    tdog333 Senior Member

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    I'm seeing a new dr tomorrow, so hopefully he will have more insight, I ordered some pancreatic enzymes to try, do you know what the dose you take it? Is it just protease amylase and lipase?
     
  11. kangaSue

    kangaSue Senior Member

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    If nothing is found to account for the G.I. symptoms side of things, there are a few rare conditions involving the mesentery arteries which can occur after eating and should be excluded.

    Superior Mesenteric Artery Sydrome and Celiac Artery Compression Syndrome (also called Median Arcuate Ligament Syndrome) can compress the respective mesentery arteries. Try sitting in a knees to chest position when the symptoms occur after eating, this can sometimes relieve the symptoms.

    Chronic Mesentery Ischemia can occur due to occluded arteries or, like myself, there is also Non-occlusive Mesentery Ischemia which is more difficult to diagnose.

    A Doppler ultrasound test of the mesentery arteries should pick up a flow abnormality for all of the above, I was borderline abnormal with non-occlusive disease. A CT Angiogram is the definitive test for the other conditions.

    An epigastric abdominal bruit may also be audible to your doctor listening by stethoscope.
     
  12. kangaSue

    kangaSue Senior Member

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    It's not something that I could get my head around but when looking into why I have trouble tolerating most fats and oils, I came across phosphoinositides (PPI) as a cellular regulator. Because I found improvement in gastric motility with an ion channel modifier drug, I wondered if it was connected to PPI as the KATP channel is affected by that.
    I had no improvement in tolerance to oils so didn't bother trying but the take away I got from it all is that maybe supplementing with phosphatidyl choline would be of benefit.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962547/
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2692585/
     
  13. AnnaDove

    AnnaDove

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    I take a pharmaceutical enzyme product called Zenpep. It has 20,000 units of Lipase, 68,000 units of Protease and 109,000 units of Amylase. It has to be prescribed by a doctor. Much stronger than anything you can order. They are hughly expensive. My medicare ins. pays for them and I think the company may have a patient assistant program for those who don't have insurance. @tdog333, be sure to use the alert sign when you wish to post to a particular person., Anna
     
  14. tdog333

    tdog333 Senior Member

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    Thanks @kangaSue I actually was taking phosphatidyl choline a year ago and noticed a lot of improvement with my chronic fatigue, I didn't have quite a bad nausea back then, maybe it was helping with that. I still have some I'm going to start taking again and see if it helps. Feel free to keep commenting anything you find helpful I'm always interested in trying things.

    Thanks for the specific amounts @AnnaDove I tried taking one but it has only like an eighth of that dosage, I'll talk to my doctor about it.
     
  15. AnnaDove

    AnnaDove

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    @tdog333, I should have explained. I'm sure it's different for each patient but I am prescribed 7 with a meal and 2-4 with a snack equaling about 30 enzyme caps a day. I have to take them with every bite of food I eat or I will get the belly ache within 30 min. Since that's a lot of caps, I empty them into a medicine cup for each meal and take them with the food that way. Anna
     
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  16. kangaSue

    kangaSue Senior Member

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    @tdog333 Digestive enzymes was something else I found beneficial too, it is really helpful with digestive pain . I use prescription Creon pancreatic enzymes 25,000 capsules, 1 or 2 capsules with main meals (3xday) and 1 with snacks, all depending on fat content in meals or snacks.

    The enzyme count in Creon 25,000 (25,000 units lipase, 18,000 amylase, 1,000 units protease) is radically different to that of @AnnaDove so I'll have to research it a bit more myself to see if a different balance of enzymes would be more beneficial.
     
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  17. tdog333

    tdog333 Senior Member

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    I also take digestive enzymes, they help quite a bit for me too. I started using d-limonene again, I have been getting random heartburn the past two days, I used to take d-limonene for its liver boosting effects, but I realized it's also great for heartburn, maybe it will help with some of the gastric issues.
     
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  18. tdog333

    tdog333 Senior Member

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    Okay well the d-limonene completely got rid of my heartburn and helped my nausea a bit, took more of the edge off. I'm experimenting with higher dose pancreatic enzymes now. I have nicorandil in the mail on the way, gonna start with 10mg a day at first I think and see how it goes.
     
  19. kangaSue

    kangaSue Senior Member

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    @tdog333 I'd like to try the d-limonene sometime when I can work out how to get over my acute sensitivity to oils. I saw somewhere the other day that it can also help with SIBO but I haven't looked further into it yet.

    With the nicorandil, the most reported side effect from starting it is headaches. If you are prone to getting them generally, I would suggest you ease into it by only taking 5mg/day for 2 or 3 days then up it to 10 mg/day in the split dose of 5mg morning and night.

    I was in touch with someone else recently who tried nicorandil for gastroparesis (like me, they didn't have ME/CFS either) but didn't go any further than taking one 5mg tablet because of the headache from it.
     
  20. kangaSue

    kangaSue Senior Member

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    @tdog333 I mentioned celiac artery compression as a rare cause of some of the symptoms you mentioned, I was just reading over something on the subject and I notice that it can also be the reason for shortness of breath.

    "Many patients complain of a variety of vegetative symptoms that emanate from the ganglion. These are dizziness, vertigo, anorexia, (near)-fainting, diarrheal bouts, gastric fullness soon after starting to eat, nausea, shortness of breath [32]. In animal experiments even eclamptic seizures could be produced by irritating the CG [41]. Difficulties in breathing are often confused with exertional asthma, since many patients complain about shortness of breath in sport activities. The correct diagnosis can be suspected if the patient is asked to describe clearly if the problem consists of blocked deep inspiration (which is provoked by physical activity – thus pointing to CGCS) or if the expiration is not fully possible (bronchial asthma). My hypothesis is that wide amplitudes of diaphragmatic movements are suppressed by reflexes to diminish the unpleasant sensations caused by the celiac ganglion compression which are substantially aggravated by deep breathing and expiration."
    http://gastroenterologen.no/2013/11/the-celiac-ganglion-artery-compression-syndrome-cgcs/
     
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