does anyone feel better when they dont eat?

[perovyscus]

Food converts cortisol to T3. Since (over a day) CFS patients have lower cortisol, it can exacerbate symptoms. Plus, insulin causes fatigue.

Someone mentioned ketosis. Eating high protein and low carb could reduce the sedation caused by insulin.

 

[justy]

I dont know wehter to go into trhis here or start a new thread, but what if you feel better for eating? I definately feel much worse if i dont eat and a proper meal (as opposed to a snack) always makes me feel better. I also have a lot of stomach problems, which get worse if i dont eat - my stomach starts to really hurt.

I have to say though that it doesnt help in an energy sense, and also that since i was a child i have always felt quite cold after eating!?

 

[nanciswell]

Feeling better not eating for me is because I have many chemical / food intolerances..I have done a total elimination diet to figure out what foods do not cause me any problems.. Being a super resonder I now live on 6 foods.. fortunately , very fortunately a diet that I am not going to die on immediately.

This is a good website describing http://failsafediet.wordpress.com/

My body lacks specific enzymes to break down these chemicals found in food. Like gluten, lactose, salicylates, amines, glutamates etc ,,

Did you know that most plants manufacture a chemical called a salicylate which for the plant is a natural pesticide.Things that ferment and meats that age for any length of time form a chemical called an amine . . For people , we have enzymes to break these down. So there are many hundreds? of enzymes which are needed for these particular things.

I found my symptoms improved alot by stopping eating from these food groups. I also use an enzyme called Phenol Assist made my Kirkman Labs which helps break down salicylates { as well as candida } ..

nanci

 

[Sing]

I just learned via a British study cited in Invest in ME from a few years back that people with ME have significantly more trouble with kidney function. There is a number for the kidney filtration rate called the GFR. It shows how quickly the kidneys are able to eliminate toxins. 90 would be normal. 60 is cited as the lowest form of normal for an elderly person. Mine happens to be a 49. I need to have this checked out further but in the meantime it tells me to stop or slow down on medications which are hard on the kidneys. So many are! NSAIDS, Tylenol, etc. etc. And then there is food:

Especially protein! Protein is hard to eliminate so if one has a slow filtration rate it helps to cut down on protein--more than what is really necessary. Not eating too much helps too.

Anyway, I'd encourage any of us to have our GFR tested--to get liver and kidney function tests--because these may show some very concrete reasons why we feel the way we do, what would be helpful to avoid, etc.

 

[Sing]

Here is the article from the journal for Invest in ME from Autumn, 2007:


CFS/ME MAY BE MAJOR CAUSE of CHRONIC KIDNEY DISEASE IN NON-DIABETIC POPULATIONS
By Dr. Tae H. Park

OBJECTIVE OF STUDY:
To prove that CFS/ME is a major cause of chronic kidney disease (CKD) in the general population.

DESIGN:
Cross-sectional study

PATIENTS:
Participants are 20 years of age and older 400 CFS/ME patients

There is a sudden increase in occurrence of non-diabetic, chronic kidney disease patients in the last 3-4 years. In one report (Class et al), 39% of the non-diabetic population showed GFR below 80ml/min. Among them 14% showed GFR below 60ml/min. We collected data from our 400 CFS/ME patients who meet the Fukuda criteria of 1994 and calculated the GFR using the Cockcroft-Gauld formula.

The results which we found in our study are striking. Among our 400 CFS/ME patients we found 88% of the patients showed GFR below 80ml/in and 46% GFR below
60ml/min. If we subdivided stage 3 CKD patients (GFR below I60ml/min) then 38.4% showed GFR between 55-60, 33.6% showed GFR 50-54, 29% showed GFR 45-49.

In stage 2 CKD classification (GFR below 90) our study showed 84.7% of CFS/ME patient met stage 2 criteria. Among stage 2 patients we further subdivided patients.
The result is as follows - GFR 60-65 is 43%, 65-70 is 45%. Even in stage 2 classification we found 88% of CFS/ME patients were close to CKD. What this means is that these CFS/ME patients will be CKD patients in the near future without any diabetes or hypertension. A recent report showed 80% of CFS/ME patients are not diagnosed yet, with only 20% being diagnosed.

If we bear these facts in mind, and if many of CFS/ME patients are misdiagnosed as having a psychiatric disease or as having HIV, then these non-diagnosed
CFS/ME patients would contribute to a major risk factor of CKD in general populations. We suggest that every CFS/ME patient is checked for s-creatinine based GFR and that this is recorded. Furthermore, one should avoid medication like Nonsteroidal anti-inflammatory drugs (NSAIDs) to control pain and most importantly to avoid many tests using contrast media - CT scan, intravenous pyelogram (IVP) especially coronary angiography, even if they havenon-specific chest pains.

 

[ABCFS12]

i absolutley feel better when i am hungry and have not eaten. what is all this about??

 

[orion]

I also generally feel a lot better when I haven't eaten for a while. I wonder whether there is a link between this symptom and the alcohol intolerance that many ME sufferers (including myself) experience.

 

[Glynis Steele]

Hi Folks,

Just thought I'd add this to the posts, if it is of interest.

Many of you will know of the KDM/Sheedy paper which found an increase of d-lactic acid producing bacteria in the stools of CFS patient. D-lactic acid is usually only seen in short bowel patients, and is not commonly investigated outside of this. I wonder whether it can be seen in patients with with CFS as SIBO, where there is an overgrowth of bacteria in the small bowel, if this overgrowth was of a type which produced d-lactate, it might lead to similar symptoms. Given the stomach involvement in many CFS patients, it might be relevant. Treatment of d-lactic acid is antibiotics, however they need to be matched up with the bacteria, as some bacteria are resistant. Sodium bicarbonate is sometimes given, and oral feeding is suspended as part of the treatment, which might explain the easing of symptoms in CFS patients, when they do not eat, and sometimes a low carb diet is put in place.

Here is the paper, for people who have not already seen it.

http://www.cfids-cab.org/rc/Sheedy.pdf

The study above is being researched further in Australia, where a new study will measure d-lactate in stool, urine and blood samples of CFS patients, and compared to samples of healthy controls, to see whether CFS patients have a higher level of d-lactic acid. Here is their application, together with brief discussion.

http://sacfs.asn.au/download/Lactic%...pplication.pdf

As part of this study a questionnaire was given to the CFS patients, regarding lactic acid symptoms, you can find this here:

http://www.sacfs.asn.au/download/Lac...stionnaire.pdf

I wanted to also point out that research has also been carried out into lactate levels in the brain fluid of CFS patients, and was found to be higher. D-lactic acid crosses the bbb, and causes neurological changes that are said to be strikingly similar to CFS symptoms. Here is part of a thread here at PR that I found recently regarding this research.

Dr. Dikoma Shungu "will build on a preliminary study showing that brain fluid of CFS patients contains significantly elevated levels of lactic acid, or lactate, a substance important in metabolism." "If this study is successful, brain lactate levels could provide an objective diagnostic biomarker for CFS and evidence of a metabolic problem in these patients."

His 2009 study, also funded by the CAA, "Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study." Mathew SJ, Mao X, Keegan KA, Levine SM, Smith EL, Heier LA, Otcheretko V, Coplan JD, Shungu DC was followed in 2010 by "Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder." Murrough JW, Mao X, Collins KA, Kelly C, Andrade G, Nestadt P, Levine SM, Mathew SJ, Shungu DC.

The abstract says, "Ventricular CSF lactate was significantly elevated in CFS compared to healthy volunteers, replicating the major result of our previous study." and concludes, "Future (1)H MRS studies with larger sample sizes and well-characterized populations will be necessary to further clarify the sensitivity and specificity of neurometabolic abnormalities in CFS and MDD."

D-lactic acidosis is a condition that is almost exclusively taught to gastroenterologist's, however they only see it in patients with a shortened bowel, as these patients cannot fully digest carbohydrates due to surgery or disease of the small intestine. It is caused by d-lactic acid producing bacteria fermenting carbohydrates, which changes the pH of the bowel, favouring acid loving bacteria at the expense of other gut bacteria. D-lactic acidosis can present without a change in the anion gap, making it invisible in blood tests, unless specifically testing for. See below:

"There are two major ways acidosis is defined from routine laboratory data. First, organic acids may be added to the body so quickly that both the H and the anion are retained; this results in metabolic acidosis and an elevated value for the plasma anion gap. Second, metabolic acidosis may be present without a rise in the plasma anion gap. In this latter setting, either the D-lactate anion was retained in the lumen of the GI tract (with the H being absorbed or titrated by bicarbonate in the lumen of the GI tract), or it was excreted in the urine, but in either case, the cation lost with it was Na and/or K ion (not a H or NH4 ion). This latter type of metabolic acidosis is akin to the over-production of hippuric acid in glue sniffers. Since D-lactate anions are reabsorbed by the kidney much less readily than is L-lactate, as time progresses, the anion gap may decline without resulting in a rise in the plasma bicarbonate concentration-that is, D-Iactate is excreted as its Na or K salt. Hence there are a number of mechanisms that may contribute to the presentation whereby the rise in the plasma anion gap might not match the fall in the plasma bicarbonate concentration. Not only might this lead to a diagnostic problem, it has implications for therapy because, once the organic anions are excreted as their Na or salts, these anions are no longer available for metabolism to regenerate bicarbonate, and the patient might have developed a deficit of Na and/or K4."

Many Path labs are not usually able to test for d-lactic acid, as they do not have the d-lactate assy kit required and would have to ship a test in, although I believe d-lactic acid can also be screened for in urine tests, where a high total lactate result would suggest further testing for d-lactic acid. However I should also point out that if anyone is interested in testing for d-lactate, they should do so in the late afternoon, as d-lactate has a circadian rythm, and builds up during the day, after each meal that contains carbohydrates, reaching a peak in early evening. It might not show up in early morning urine tests, see the paper below.

http://www.clinchem.org/cgi/reprint/41/1/107.pdf

Here are some papers regarding d-lactic acidosis, however they are all in patients with a shortened bowel. The first one has a good graph of symptoms, which are very similar to some CFS symptoms. I would imagine that in a short bowel patient, their symptoms would be very severe, more so than in CFS.

http://hkjpaed.org/details.asp?id=577&show=1234

This paper talks of the possibility that d-lactic acidosis may occur in a human with a complete bowel, when they were investigating d-lactic acidosis in a calf model. "The mechanism is likely similar to that documented for D-lactic acidosis in SBS in humans except the etiology of the malabsorption is viral infectioninduced villous atrophy rather than surgical removal of the small intestine."

It goes on to say

"There is a possibility, although it has not been described, that a similar scenario could occur in diarrheic monogastrics, including humans"

http://jn.nutrition.org/content/135/7/1619.full

I wonder whether people are finding that their CFS symptoms are improving when they do not eat because they have a small bowel bacterial overgrowth of d-lactic acid producing bacteria as in the first study, and their improvement is due to the bacteria being starved out, reducing CFS symptoms.

Best Wishes

Glynis x

 

[Stone]

I definitely feel much better when I don't eat. This was brought home to me very clearly after undergoing "RnY" gastric bypass surgery in 2004. Beginning about two days after the surgery, while still in the hospital, I was amazed that my symptoms seemed to spontaneously disappear (virtually), which was the opposite of what I had expected having undergone other (unrelated) surgeries in the past and the major flares that had always followed. At first I thought the amazing reduction of symptoms was merely due to the big emotional relief from the stress of anticipating a quite dangerous surgery, and having the scariest part behind me. But as I continued to recover from the surgery itself, being on an entirely liquid diet, the near total cessation of ME/CFS symptoms continued, to my utter amazement and joy. This all started well before any major weight loss began in earnest, before any symptom relief could be attributed to weight loss.

At my 6-week follow up with the surgeon, I happily told the surgeon about the near total remission I was experiencing. The surgeon replied that (get this) he sees this happen in most of his patients with Fibromyalgia and Chronic Fatigue Syndrome. When I queried as to why the good doctor didn't mention this to me before the surgery, he said that since it doesn't happen with every patient with my illness, he didn't want to falsely elevate my hopes, which seemed like a reasonable cause for not mentioning this phenomenon to me. The doctor also added that the remission of symptoms usually subsides about 9 to 18 months after the surgery, and cautioned me not to be overly disappointed if this is the case with me as well (as if disappointment could be somehow avoided in such circumstances, lol).

True to the surgeon's prediction, my symptoms did slowly and gradually return beginning at about 9 or 10 months postoperatively, with a return to my pre-surgery level of ME/CFS symptomatology (minus whatever degree of ME/CFS/FM symptom aggravation previously caused by the amount of excess weight I had lost at that point) at about 15 months post-op. By this time, I was able to take in a good deal greater volume of food than was possible in the months immediately following the surgery. Typically, after the procedure I had done, a person is only able to take in a few ounces at a "meal", an amount roughly the volume of a shot glass or two, depending in what is eaten. By about the time a year has passed, one is typically able to take in around 4 to 8 ounces in volume at a meal but this varies considerably from one person to the next and from one food to another.

Now, almost 7 years later, it is possible for me to eat amounts similar to 'normal' people from time to time, but not consistently, and it depends highly on what the food is, but I would have to struggle to do that. Most of the time, I eat can only very small portions (6 to 20 bites per meal, depending), and I still find that the bypass surgery notwithstanding, I feel much better when I eat much less, as along as I take my vitamin supplements. If I don't take my vitamins, and plenty of them, I'm incredibly sick. Now, my ME/CFS is the worst it's been since its onset in 1995, including those first two nightmarish years. I do find that the less I eat, the better I feel. Also, I have recently taken to periodic fasting (for spiritual purposes), and I find this to be a beneficial practice for me both spiritually and physically. When I allow myself to eat at the maximum that I can comfortably eat, even with the reduced capacity afforded by my altered gastric architecture, I don't feel nearly as well in terms of my ME/CFS symptoms as I would if I were to eat a bit less that I am capable of eating or if I am on a periodic fast. I do have to watch that I am taking in enough to maintain my weight, as I do not need to or desire to lose any more weight.

I really feel this should be studied, in particular the amazing phenomena experienced by myself and many others immediately after gastric bypass surgery. The surgeon actually expected my remission and wasn't surprised in the least when I reported it to him. Food for thought ;-)

 

[orion]

Stone, that's fascinating story. It is indeed food for thought. It's frustrating that doctors generally gloss over symptoms such as this, and alcohol intolerance which are almost unique to ME. Instead they focus on more common symptoms that can be (mis)attributed to psychologically induced fatigue.

I've noticed that I feel better on a low carb diet. But I suspect the important thing is actually the volume of food ingested rather than the ratio of carbs to proteins. On a low carb diet you tend to eat smaller portions because protein is more filling (that's one of the reasons why the Atkins diet is believed to work). Your experience tends to support my observation.

Unfortunately it's not a cure. The (relatively) good feeling that comes with fasting, and the (relatively) bad feeling that appears after eating is short lived. And obviously you can't fast indefinitely. However, I wonder whether it would be possible to exist on a liquid diet long term.

 

[Alesh]

I also feel better when I am fasting. Actually I more or less survived this winter by eating every other day only.

 

[WestOzGirl]

Going Out On A Limb....

I believe this to be an important clue in my illness and I have been trying to make the connection between not eating and higher energy levels for sometime. When I wake most mornings I feel well and it is not until after I eat my symptoms set in. In addition, I have noticed when I take psyllium husk capsules (natural bile acid sequestrants) I have fewer digestive problems.

Before my fatigue began, the first signs of illness were gallbladder pain and loose yellow stools. My initial thoughts were I had a gallbladder and/or a bile acid synthesis problem. I had a plethora of tests, and not surprisingly, everything came back normal. After hearing about XMRV I felt certain this was the common denominator in my illness and I wondered if it the retrovirus damaged the gallbladder mucosa or interfered with bile acid synthesis.

Anyhow, after recently reading the ScienceDaily article (http://www.sciencedaily.com/releases/2011/03/110308172940.htm), I was reminded of the Hempel twins (with Niemann Pick Type C and XMRV) and also some of those who recovered by taking bile acid sequestrants. I have been trying to piece together to determine which events are mutually exclusive and which are dependent. Could one tact in our treatment lie in the reduction of cholesterol levels or manipulating cholesterol metabolism???

 

[Esther12]

Just to say... some connective tissue disorders (may be related to CFS) mean that people struggle to store food as fat or muscle, and are also linked to digestive problems (and autonomnic stuff, etc). In these cases, it could well be that eating makes you feel worse, but also be really important that you eat regular meals, and ideally snacks through the day too. It's possible that things like fasting would mean you felt better in the short run, but worse in the long run.

I think I might have something like this.

 

[Sing]

I think we are really onto something important in this thread! The value of not eating, and not drinking alcohol suggest many lines of inquiry and research, but in general, it seems to me that a major contributing problem, or problems, are with digestion--whether it is the stomach or gall bladder or liver or gut or kidneys.

I've heard that most of our immune system is also lodged, or generated, in our gut. So that is another factor.

It takes a lot of the body's energy to digest food, as well, and anything which isn't properly digested, passed through and gotten rid of becomes a toxic problem. So, there is a problem with our converters and detoxers.

You all have encouraged me to eat more lightly and less often than I have. This isn't completely easy because eating is soothing and a source of pleasure. It makes me feel temporarily better, usually. But like most of you, I feel better when I don't eat, or just eat lightly.

 

[Esther12]

or just eat lightly.

I'm a bit worried about people cutting down the ammount they're eating in order to improve fatigue, at least for those who are not currently overweight. I've certainly seen 'little and often' eating suggested before though... maybe that's the route to go? Try to eat the same ammount, but in 6 meals rather than 3?

Low calorie diets do often cause fatigue, so I want to encourage everyone to be really careful here. Good luck all.

 

[pken]

I tend to believe that as long as fluids are kept up then missing meals is fine IF it's helping recovery for whatever reason. I don't think it's generally a good idea to get energy from sugar drinks (like cola) but I've found that it can be an effective way to keep the improvement while getting calories into my system. Some juices work too, but some don't for me. Also taking supplements that support fat burning, like carnitine and alpha lipoic acid, helps. This may also improve liver function, especially in those with fatty liver disease.

"Sing" mentioned the immune system/gut connection - many of us have taken or are taking antibiotics for our problems - and while they can be useful/essential, in the long term they may be causing more trouble. FWIW I've spoken to a number of pharmacists who have said it's fine (and a good idea) to take probiotics while on antibiotics as long as you take them between doses (otherwise you'll almost certainly be wasting your time and money).

 

[Athene]

Hi folks,

Perovyscus, I am very interested in hearing that food converts cortisol to T3. Do you know of any websites or articles that explain this? I have very low cortisol adn I know many others do. Though there are other PWCs with high cortisol. I wonder if there is any correlation between high/low cortisol and those who feel better/worse when they don't eat?

Also, I have been experimenting with ketosis, as I have realised that if I eat a very low carb, high protein diet and go into ketosis, I get something close to the effect of not eating. It's not quite as good but it is much better than being on a normal diet. As well as energy and alertness, my tummy is much happier on this.
Has anyone else tried this? I do know some people find meat dreadful (my mother with CFS refuses to eat any meat at all) but many, like me, find carbs seem to be the root of all evil.

Mary, thanks for your comment. The doc put me on a two month break from antibiotics to let my liver recover a bit and to see how the antibodies to Lyme would settle. The level of Lyme has been reduced drastically (but not eliminated yet), but my chlamydia pneumonia has worsened tremendously. I knew the blood would show this, as I felt the symptoms in my heart and lungs getting extremely bad. So now I am on 4 antibiotics, and higher doses. I'm feeling improvements after 3 weeks but I have to keep going for 3 months at least, doc says.

Right, here's the bit that's relevant to this thread:

After a while on the liver cleansing "antibiotic holiday" I could feel my liver worked better. A lot of the Lyme bacteria which impair its functions had gone and, as the antibiotics cleared out too, my digestion worked better than it has done in years. I could tolerate carbs which would normally have made my tummy bloat up like a zeppelin. I was absorbing moderate amounts of fructose (a job for the liver) which previously I could not absorb at all.
I really think that a lot, maybe all, of our digestion problems are liver-related and I strongly suspect that this has an important impact on energy levels too. At the start of the abx holiday I was so lacking in energy I was completely bedbound. After 6 weeks of my liver clearing out I actually wenton a week long trip to England all by myself, carried my luggage, caught the plane and everything, went out to meet friends each alternate day. Amazing! Then things slowly started regessing as I felt the infectoin gaining ground again - I mean regressing in the sense of old digestive problems returning and energy levels declining in tandem with this.

Well, THAT'S MY THOUGHT FOR THE DAY.

 

[Peggy]

I'm intrigued by the fact that so many others share this symptom. Same for me -- I feel better when not eating. However, I definitely have a strong appetite. But when I don't eat and get to a good tummy growl, I tend to have more energy and more cognitive acuity -- it's just about the only way I can handle any mental task at all, so I will sort of fast for awhile and then quickly do a brain task, and then eat and crash. I have also noticed that there is little difference for me in what I eat, though protein generally seems to be good. But everything else is kind of the same. For example, for years with ME/CFS, I ate almost nothing but malt-sweetened chocolate coconut clusters and malt-sweetened chocolate almonds, and that seemed just about as good as eating fresh vegetable juices and the most strict healthy balanced diet imaginable.

 

[Sing]

Athene,

I was interested in reading about your experience with food, protein and carb balance, antibiotics and the liver. What you wrote about your experience makes sense to me. What kinds of antibiotics were you taking when you felt better afterwards?

I've read that Doxycicline seems to be effective against some viruses like XMRV. Did I read some parasites too? In other words, it goes beyond bacteria in its work.

As for cortisol and T3, what I've read is that it takes cortisol to convert the T4 in the body, or that we get from thyroid medication like Levothyroxine, to T3, which is what the body actually uses. So it is the other way around from what you wrote. A functioning adrenal gland--ie, producing cortisol as needed--is necessary for a well functioning thyroid. This makes sense to me as the hierarchy goes: Hypothalamus to pituitary to adrenal to thyroid.

 

[Athene]

Hi Sing, I like your signature quote!

Thanks for clearing up the thyroid/cortisol thing. So it seems that, basically, eating or fasting doesn't really come into it as far as that issue is concerned?

The antibiotics I took first time around were azithromycin and minocycline (new generation doxycycline as far as I understand).

I am now taking bactrim, minocycline, plaquenyl and rifadin. Three are antibiotics and one is an antimalarial/antiparasitic. Very interesting that you said some of these work on infections beyond bacteria. I know I have several chronic viral infections but still haven't been tested for XMRV.

On top of this wopping heap of meds I am also taking peptazol (proton pump inhibitor), nystatin (anti candida) and lyrica for neurological pain, but my liver is coping far better with excreting this lot (plus a lot of dead germs, presumably) than it did in the last round. I don't feel bogged down with toxins: My personal and reliable yardstick for this is intolerance to phenols and other things in perfume and cleaning products, which improved amazingly at the end of the previous round of antibiotics. This time it has come back a little but nothing like as bad as before.

As far as digestion goes, I am definitely better than before initiating treatment but a bit worse than I was in the antibiotic-free interval between round one and round 2 of medication: I have had to give up all fructose again and limit carb intake in general.
My ability to keep energy at a more even level through the day is still improved, and has not gone back to how it was before (living from one brief sugar high to another, or else fasting to get a more steady energy level then crashing when I had to eat). I really think the liver must be key to this.