2 enlightening fasting experiences

[cigana]

Hi Glynis,

I see if the treatment is the same as usual (i.e. antibiotics) then I'd prefer to try the elemental diet (which works as well as antibiotics but is probably safer) or fasting if I get the chance. So perhaps knowing that I have DLA wouldn't change how I went about treatment. But then again it's be really nice to know!

Re. the SC Diet - I had come across it before but decided against it as there were some foods on the "legal" list which I thought should be illegal - such as apples and other fruit which obviously contain fructose. Fructose is digested slowly and so gets to feed the bacteria throughout the small intestine. No fructose is the recommendation for SIBO by Mark Pimentel MD and the recommendation for high streptococcus by Sarah Myhill. So I didn't think the basis of the SCD was well thought-out - possibly a bit outdated...

Thanks again,

Cig

 

[Glynis Steele]

Cig,

I see you mention the elemental diet. My daughter was tube fed for many years on an elemental diet (Neocate Advance) and had no symptoms whilst on it, as long as her calories did not exceed 800 per day. When it was time to increase her calories for weight gain, she developed symptoms. I have not heard of this, until I read your post, which is why I replied. Protein increase she was fine with, but any carb increase resulted in symptoms. I can't remember how much carb content was in the neocate. As far as the Specific Carb Diet is concerned, it is not something we could do with any success, as my daugher has severe hypoglycaemia issues. She was hospitalised twice due to this, and nearly died the first time, following a tummy bug. Her blood sugar was 0.9, so extremely dangerous for us. We saw no symptoms for 2 weeks following her illness, which again ties in with dla, as it takes 2-3 weeks for levels to build back up, as long as they are starved out enough. I see on the Pecanbread site that apples should be limited, and when tried, should be cooked either in the oven, or boiled, to make them easier to digest. Small amounts should be given, like a teaspoon a day to start with. I totally get what you are saying though, when my daughter was tube fed, it did not matter that the apple was cooked, it still caused problems. She still had her tube feeds, maybe it would have helped to reduce them slightly, but we did not dare!

Antibiotics would be used together with IV sodium bicarb, to correct the acidosis. We are doing a trial of long term antibiotics, and she is doing ok on them. Not symptom free, but definate improvements. We had a small trial first, and 3 support staff at school approached me and told me Jasmine was much clearer in her thoughts, not so spaced out. I asked whether they would write statements, which they did, listing improvements, and gave these to the GI, so that's how we have the antibiotics. I'm not sure where to go next, whether to ask for the test again, as the GI refused, or to ask whether we can also trial bicarbonate of soda orally. It has taken us many years to get to this point, I don't want to rock the boat. Mainstrain dr's are really skeptical and I think it's disgraceful that not enough is being done. I hope we will all see our day with these lot, eventually.

Regards

Glynis

 

[YSL]

There is a great book on the subject of fasting by Stephen Harrod Buhner. It talks about the profound health benefits of fasting on the immune system and diseases.

 

[Athene]

Hi Glynis,
Interesting about the Neocate. My diet is about 50% Neocate Advance at the moment, the rest is protein foods and salad/watery vegetables. This means my carb intake is pretty much only the glucose in the Neocate, which is absorbed from the stomach and doesn't reach the intestine.
I am getting GI symptom improvement, but not the general energy/wellbeing improvements I had when I went almost carb free and got into ketosis. This is why I think ketosis as an alternative energy path is fundamental here.
I just wish I understood more about the mitochondria and the krebs cycle, but it is hellishly complicated.

 

[cigana]

Hi Glynis,

It really does sound like she's in a bad way gut wise.

When it was time to increase her calories for weight gain, she developed symptoms.

Does this mean you increased her calories by increasing the amount of neocate, or by giving her food?

when my daughter was tube fed, it did not matter that the apple was cooked, it still caused problems

Have you considered fructose malabsorption?

Mainstrain dr's are really skeptical and I think it's disgraceful that not enough is being done.

I really agree with you! They are a disgrace. But we will fight to turn that around.

Why has the GI refused to give more antibiotics - does he have concerns over their use?

I really believe there is a way through though it's just a matter of time. With these forums knowledge is power.

Best wishes,

Cig

 

[cigana]

Thanks for the book recommendation YSL.

Hi Athene,

Are you aware that one of the main points of being on an elemental diet is that there is no protein? I would have thought there's no point in doing 50% neocate if you're also taking protein foods?!

Cheers,

Cig

 

[Glynis Steele]

Hi Cig,

Yes, either increasing the Neocate, or extra carbs orally caused symptoms. I was gutted when we increased the Neocate and she developed symptoms, as we had always been able to fall back on this elemental feed, to stop her symptoms. I was even considering a peg operation, as she was starting to have problems with the ng tube. It was then I realised how stuffed we were. It was any and all carbs that caused symptoms, never found anything she did not react to. I phoned SHS, who make Neocate and asked them what the glucose came from in the feed, and they told me it was from corn, which I knew she reacted to. I think her body has a threshold and once this is exceeded, her body cannot clear the d-lactic acid produced by bacteria. Not that I know for definate that she has dla, but her to me, her symptoms are strongly suggestive of it. Basically when she was tube fed, as long as she only had 800 calories of feed, she had no symptoms. Increase of feed, or orally fed carbs, and she developed symptoms, which lasted 3 days. So if she had 900 calories of feed, or 800 plus oral carbs on a Monday, she had symptoms Tuesday, Wed and Thursday, then woke up on Friday with no symptoms whatsoever, as long as she had no more carbs during that time, other than her 800 calories from the feed. During this time chicken was the only protein she would eat, and she did not have any symptoms when she ate this, as well as her 800 calories of neocate, so I believe she has a huge carb problem, and dla is the only thing I have found which would cause a neurological change, which lasts 3 days.

As far as fructose or carb malabsorption goes, the GI stated Jasmine would have diarrhoea as a symptom, whereas she has slow gut motility and is always constipated. I read a paper on dla in which the writer theorised that stagnation of the bowel might contribute to symptoms. She takes domperidone 3 times per day, to help with this, without it she vomits.

Jasmine is still on antibiotics, metronidazole, 2 weeks on, 2 weeks off, and is clearer headed everytime she is on them. After the GI read the statements from school, she was willing to give Jasmine them long term. Any investigation into what I have said is ignored, though. She has even stated that even if Jasmine did have dla, she is already on the treatment. I replied that she is only on half the treatment as she would also need sodium bicarb to correct the acidosis. This is an essential part of treatment. The only time I see the real Jasmine is when she is poorly, with a bug that stops her eating. We then panic like mad, trying to get enough into her to stop a low blood sugar fit, but usually manage this. After a few days of this, she has no symptoms, just like when she was tube fed and ate no carbs. Next time she is ill I am going to video it, and show it to all and sundry, I will possibly go as high as I need to, the Directorate of the hospital, or chief executive with this, to show them the difference in behaviour, and demand further investigations be carried out, but until then, I will continue with the antibiotics, at least it's something!

Best wishes, Cig, we'll get there in the end!

 

[Glynis Steele]

Hi Athene,

I too have tried to look into mitochondria dysfunction and the Krebs cycle, I wish I was taller, most of what I read goes completely over my head! In the abstract below, it does state " Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications". This is in regard to dla. I cannot see where mito dysfunction is discussed in the full study report of this, though I have only skimmed over it. I have looked at ketosis, Jasmine suffering from low blood sugar at times, I can smell it on her breath, like a lemony sweetie smell, or nail polish remover, however she can be in ketosis and still have her symptoms, which is why I tend to think of her having dla and not ketosis.

I am glad you see relief of your symptoms when you are low carb, whatever the reason for your improvements, it's like a miracle to feel free of such a soul destroying beastie. Hope the improvements continue, but for me, I am consumed with dla being the cause of problems here.

Take care.

Glynis





http://www.ncbi.nlm.nih.gov/pubmed/19567398

 

[cigana]

Hi Glynis,

It did occur to me that part of the problem might be that you are not neutralising the acids - as you quite rightly point out the treatment would call for sodium bicarb (or another alkaline) in the absence of an alkalising diet. Do you do pH readings of her urine?
I am now on day 2 of my elemental diet and monitoring my urine acidity noticed that I am now acidic (whereas on my previous diet I had lots of celery juice to keep the acidity in check). So an elemental diet worsens the effects of acidity in the absence of an alkalising agent.

Why does the GI not allow you to add in bicarb? I can see long term use is a bad idea but I would guess this calls for it? Also you could look at other alkalising agents - for example Dr Myhill recommends magnesium carbonate, but there will be others.

You say she is allergic to corn - can you try other elemental drinks? There is Vivonex for example, or you can even make your own (as I have to save money) based on non-corn derived ingredients.

I would also very seriously consider fasting as an option (ONLY at a fasting clinic - in fact only at True North Health in the US). I know that it sounds crazy given her blood sugar problems, but I would definitely urge you to speak to Dr Goldhamer (or one of the MD's) at the clinic because he would at least be able to tell you whether he thinks fasting is indicated or not - he will not suggest you fast if there is any danger, they are used to treating very sick people who react badly to food/feeds. they are very professional there. I have called him myself and he has given advice freely.

Does she tolerate pure EPA/DHA? This helps heal the leaky gut. I would also consider adding in extra glutamine to her elemental feed, as this heals the leaky gut too.

But it really sounds to me like you need to get her down to level 0 then build back up. I mean an elemental diet she can tolerate or fasting if it is suggested.

You say you don't know how the DLA can give rise to mitochondrial malfunction? I believe it is via a related route - LPS is a toxin produced by the bacteria, you can read on this website how it affects a huge variety of parts of the body (inclduing the mitos):

http://www.microbialinfluence.com/hypoglycemia.html

But I do think how it causes symptoms is irrelevant at this stage. What she can be fed is the first piece of the puzzle from my point of view!

Best

Cig

 

[cigana]

p.s. How does she have constipation if she's on an elemental diet? Or are you saying she doesn't have to be on the elemental diet while she's on the antibiotics? In which case what does she eat while on the AB's?

cig

 

[Athene]

Hi Glynis,
I really hope you manage to find a better solution for your daughter as her problems sound so bad. Does she have EGID as well as CFS? (Sorry if I missed a reference further back...)
Cigana,
I use Neocate because I have so many food allergies I can eat about 12 foods, which is not enough for balanced nutrition. Therefore my diet is not "elemental", but the elemental feed is the one thing I know I can consume without problems to get the nutrients I need. When my intestine gets too bad, I go elemental until it settles down. This is the way Neocate is used by people with Eosinophilic gastro-intestinal disorder and hypereosinophilia. Taking solid foods as well helps avoid the incessant blood sugar ups and downs that you get on Neocate only, as well as the horribe intestinal issues.

 

[Glynis Steele]

Hi cig,

Jasmine is not tube fed at all now, so does not get an elemental diet. She has not been for about 2 years. She eats well, just has symptoms all the time. I never found a feed that she could tolerate, once the calories exceeded 800. Most feeds contain either glucose from corn, or maltodextrin, which she also reacted to. The dietician and GI could not find anything that helped.

I would not want to fast her, 'cos of her sugar levels being unstable. When she goes, she goes quickly, and needed an overnight feed for years as she could not last through the night without having a low blood sugar fit. She has Kabuki Syndrome, and I know of 2 fatalities in this syndrome due to hypoglycaemic seizures.

Currently the GI has agreed to the antibiotic regime of 2 weeks on 2 weeks off.

With regard to the mito dysfunction and dla, I agree with you, but in the paper regarding CFS/DLA it does not mention how the mitochondria become dysfunctional, and I was just pointing this out to Athene.

Jasmine is actually doing really well. I think it sounds worse when you see it in writing. I have to point out that she does not have CFS, she has a change of personality when she eats carbs (autistic traits), but has not been diagnosed with autism. She is a happy, cheerful little soul, and I just want to get to the bottom (no pun intended!) of her problems.

Thanks to both of you Cig and Athene, for your concerns. I hope you both continue to feel well.

Glynis x

 

[cigana]

Hi Glynis,

Oh I see, well good luck with your investigations. The only thing I might say is that you can always use sugar (sucrose) instead of corn-derived glucose.

BW

Cig

 

[Glynis Steele]

Thanks Cig,

Unfortunately sugar also causes her problems!! I think she is rather complex!

Hope you are still feeling well.

Regards

Glynis

 

[Glynis Steele]

Hi Cig,

I found this link, (again dla in a short bowel patient) which states

*D-lactic acidosis should be considered in all patients with
short bowel and/or other malabsorption syndrome whose
acidosis corresponds with food intake and resolves after
cessation of ingestion.

http://www.amc.edu/academic/gme/programs/Gastroenterology/documents/wang_crohns.pdf

Thought you might like it!

Glynis

 

[Wayne]

Water Fasting, Juice Fasting, Partial Fasting...

All of this is just my uneducated guess so I'd be keen to get ideas from anyone who knows a thing or two about the human body!

Thanks Cigana, Glynis, Mark, Justy and others who have contributed to this thread. I’m always pleased to see a discussion about fasting, and the significant health potential it presents for those who are able to successfully fast in some form or another. Cig, I've had a human body for over 58 years now, so I like to think I have learned a bit about the human body. :Retro smile: Perhaps some of what I've learned will help out.

I've researched fasting for over 30 years now, and have had a fair amount of experience with different forms of fasting. In my early research days, the two books that influenced me the most were “The Miracle of Fasting”, by Paul Bragg, and “Juice Fasting” by Paavo Airola.

Paul Bragg advocated water only fasting (without accompanying enemas), while Paavo Airolo was quite insistent that juice fasting with enemas was far more preferable. Bragg argued that animals very naturally water fasted without enemas when sick or injured, and humans should follow this example. Airola countered by saying animals don’t go to school and learn about optimum ways humans can enhance therapeutic health modalities, including fasting.

Regarding enemas, Airola believed the colon becomes the primary repository of a lot of the toxicity that fasting releases from various areas and tissues of the body. To let this toxicity just set there in the colon only allowed it to become reabsorbed and remain an unnecessary (and harmful) burden on the body.

Having more of a “natural” bent, I initially sided with Bragg’s idea of water fasting without enemas. I found relatively short water fasts to be helpful in some regards, but also found them to be fairly taxing on my system, sometimes taking me several days to “recover” from them.

Somewhat hesitantly, I decided to experiment with juice fasting using daily enemas. It immediately became apparent that this modality was far easier for me to do. It felt much less taxing on my body and psyche and I also found it easier to experience the positive aspects of the fasting experience. I never returned to water fasting (though I would not rule it out if I was able to do it with adequate supervision and monitoring).

Paul Bragg described an experience he had once while he was in the third week of a water fast. He experienced a very painful urination that was very unusual. He decided to send this urine away for laboratory analysis, and discovered it was chock full of pesticides, and other toxic residue. He believed his body had likely stored this for a very long time, and was able to release it during this fast. He felt this elimination had catapulted him to a whole new level of vitality and well being.

This was an inspiring story to me when I first read it, but I’m mentioning it here as a precautionary note. It seems most PWCs have some degree of methylation block which compromises our ability to detoxify under normal circumstances. I have to wonder what would happen if the above kind of sudden toxic release happened to a PWC. I also have to wonder if very many doctors and/or fasting clinics are aware of some of the challenges PWCs might present. I think it would be advisable to consider some of these issues quite thoroughly before undertaking a fairly lengthy fast, even under the best of supervision. (I'll try to elaborate more on my own extensive consideration surrounding this issue in another post).

Vitamin B-12 levels presents one of the biggest concerns I would have about a lengthy water fast. I seem to remember Rich van Konynenberg believes one of the ways PWCs begin to experience a methylation block is if we become exposed to high levels of toxicity. Vitamin B-12, which is necessary for both detoxifying various kinds of toxicity, is also necessary for proper maintenance of the methylation cycle.

I would think that if B-12 levels were to become depressed during a water fast because so much is used up for detoxification, then it could possibly exacerbate an already stressed methylation cycle and fragile state of health that PWCs deal with. Since this is one of my primary concerns, I would appreciate hearing back from anybody who might have a different take on this.

I’m going to try to stay up with this thread as best I can. I would like to describe a bit more some of my own fasting experiences, and how I intend to proceed going forward. In short, I believe that any type of modified fasting that is well tolerated has enormous potential to improve just about any health condition, including ME/CFS. In my next post, I’ll elaborate on why I think raw goat milk/whey kefir may be a key for my own situation.

Best to All, Wayne

 

[cigana]

Thanks Glynis - I did!

 

[cigana]

Hi Wayne,

Great to hear somebody else likes the idea of fasting, thanks for expressing your thoughts!

Regarding juice vs. water fasting - they are completely different things and water fasting is far superior for healing disease. Juice fasting is nothing more than a fructose-based diet, and glycogenesis continues.

With water-fasting the following occur (which do not occur on a fruit diet):

1-Enzymatic recalibration, ehancing the detox.
2-Detoxification of fat-soluble toxins (because of ketosis).
3-Natriuresis is greatly enhanced.
3-Reduced gut leakage.
4-Resolution of many auto-immune diseases.
5-Sympatheticotonia (normalisation of the autonomic nervous system).

Did you get a chance to watch the series of videos on youtube? Alan Goldhamer (who has fasted 1000's of patients) talks about the difference.

I definitely hear you though regarding too much detox - guess this could be a real problem for some PWC's and a real reason to procede with caution.


I remember Joel Fuhrman saying somewhere that in the early days of his fasting clinic he used to check patients' vitamin and mineral levels regularly but they stopped doing it because they never saw a serious drop. A healthy individual would have more than enough B12 in their liver to last for a fast, so I guess for you it's about how well you store B12? I know for example (having previously been B12 deficient) that I can now go a couple of months and my serum B12 levels do not drop significantly (maybe longer but I never tried). I suppose you could try going without for a week or so and retesting to see how quickly levels drop.

Alan Goldhamer at True North health told me he has fassted many PWC's and none of them got worse (some go into remission), though I don't know if he gives any special attention to them. Would be good to ask him...

Cheers,

Cig

 

[Wayne]

I remember Joel Fuhrman saying somewhere that in the early days of his fasting clinic he used to check patients' vitamin and mineral levels regularly but they stopped doing it because they never saw a serious drop. ... Alan Goldhamer at True North health told me he has fasted many PWC's and none of them got worse (some go into remission), though I don't know if he gives any special attention to them. Would be good to ask him...

Hi Cig,

Thanks much for your reply. Your above information is very helpful. I'll probably try to talk with Alan Goldhamer at some point and try to get some feedback regarding some of my concerns regarding PWCs fasting.

Just to mention, I'm not a big believer in fruit diets, or doing very much at all in the way of fruits. I suspect many PWCs have problems with sugar metabolism, and these kinds of fruit intakes can exacerbate this. This might be especially true if one were to try to do a fruit juice fast only.

One thing to consider: How might a person begin to "prepare" for a water fast (particularly a lengthy one)? I think your experience with shorter water fasts would certainly be helpful. The protocol I'm following (which I'll elaborate on later) seems to be the right thing for me, given my health status and my age. I do believe however, that just about anybody can reap the benefits of fasting, whether water fasting, partial fasting, or some other kind of "modified fasting", once they find what they are able to work with and tolerate well.

Best, Wayne

 

[kurt]

Interesting thread, and I just want to add to Wayne's comments on B12. I have always had problems fasting with CFS, and have some known digestive system problems. And have been through almost all the diets mentioned on this thread. The one that helped me the most, FWIW, was the 'Body Ecology Diet'. The SCD was a close second. But that is not what I want to say, rather, when I started a serious B12 protocol I noticed that my blood sugar was more normal, digestion worked better and I am now able to eat less, because I seem to get more benefit from food. I can even fast from a meal little now and then. This is an unbelievable turn-around given that for over 10 years I have not been able to skip a meal or even a between-meal snack without horrible symptoms, I had a diagnosis of reactive hypoglycemia at one point. Now that is all somewhat normalized by B12. So after a little searching I discovered that B12 deficiency really alters the digestive process, and supplementing corrects much of that, in particular, B12 helps with the digestion of carbohydrates and fats. I believe also it is involved with pancreatic enzyme production. And I seem to detect that there is more 'energy' for digestion with B12, because it just seems to work far better.

So here is a theory, if we are B12 depleted (which I believe almost all CFS patients are, at a cellular level), eating food will create problems due to improper digestion and absorption processes. So fasting then gives the body a break from all the partially digested foods that it reacts to. Therefore, feeling better from fasting, for those who can, might simply be yet another sign of a B12 problem in CFS.