@Avenger I don't know if this helps , but the allergist/immunologist I see told me no probiotics for the ibs . Hematologist said I have celiac . But apparently, probiotics are a problem and I have no idea why . If we have horrible gut health , don't we need probiotics?
Also, who knows how our guts went bad , many many reasons but I think your posts are very insightful regarding all the other symptoms . I have all of them.
How do we test for sibo and the new discovery ? Dr's in nyc laugh at these things but will
tell people they have ibs and celiac or even cancer . I'm sure cancer is in my near future.
I don't know why but the allergist reacted very strongly to probiotics and said no. Did you find out why it set you back ? How are you now ? Are your symptoms gone?
Hi, Probiotics are a problem because there is controversy in their use. There are reports that the use of D-Lactic producing Bacteria in Probiotics which were also used by the NHS may have caused the problems or even caused Bacterial Overgrowth.
There are also many reports saying that this is all nonsense. The NHS has take a stance to say that there is no evidence of benefit (which may be to contain any possibility of blame), which again is crazy. The correct Probiotics and blends need to be determined first of all as safe.
There are a number of Reports concerning the use of Probiotics to reverse Gastrointestinal illness since early last century.
Lactobacillus rhamnosus GG (LGG) is one of the best-studied probiotic bacteria in clinical trials for treating and/or preventing several intestinal disorders, including inflammatory bowel diseases and diarrhea.
Guess where you will find the use of Lactobacillus rhamnosus?, on Dr. Myhill's site. She sells kits to grow your own. She has always been light years ahead of other Doctors concerning Gut Science.
Please go to her site and read what she has to say concerning SIBO and Probiotics and also D-Lactic acidosis if you have very bad or neurological symptoms. She also does some UTube videos fully explaining.
My own belief is that and Bacterial Overgrowth act as an Infection and so the Flu like or Infection symptoms and weakness and fatigue are caused by the Metabolites produced causing mitochondrial dysfunction. But Doctors cannot understand this as an infection because there is no raise in temperature, because the Bacteria involved stay within the Gut as Overgrowth and do not enter the Blood Stream to cause any raise in temperature. It is the Metabolites that are produced that cause illness.
Message to Perrier below; This will help explain if you have Bacterial Overgrowth. It is important to get it investigated by a Consultant Gastroenterologist. Not all Gastro are trained to fully understand and very few to understand D-La. I was recently sent to one who told me 'I have never heard of D-Lactic acidosis, I will google that'. Be aware that you must ask for Gastro's who specialize.
Hi Perrier, sorry to hear that your daughter is so bad, they have obviously checked for everything else as they had with me? I had a lot of investigations 18 years ago, which virtually proved negative. Has she been checked for Lyme disease etc?
But whatever I tell you, you must check with your own Doctor to make sure that I am not suggesting anything counter productive or that is contraindicated by any other condition that will make your daughter worse! Please also check Dr. Sarah Myhill's website (she uses a version called a Paleo Diet). She gives free online video's with advice on Utube for Bacterial Overgrowth (she is one of the heroes of ME/CFS).
The first thing is does your daughter have gut problems, which correlate with dysbiosis or bacterial overgrowth?;
eg. abdominal pain, distension or discomfort, dyspepsia, reflux, bloating and burping up (acid or food), gas, or feeling or being sick, diarrhea, constipation or weight loss (you can have weight loss or gain with D-Lactic acidosis). These may not be as bad as the other symptoms that she is experiencing that are making her unwell, abnormally fatigued, weak or in pain (with other seemingly bizarre symptoms).
If so; getting a diagnosis of Bacterial Overgrowth from a Consultant Gastroenterologist is the first step (I will tell you how I treated D-La later). You need to ask for Hydrogen and Methane breath test given with Sugar to prove that these gasses are being created in the Small Intestine by Overgrowth. You also need to ask for a Fecal Assay to check which Bacteria are causing the problem. Fecal Elastase (to check Pancreatic Function/Insufficiency affecting or causing Overgrowth), and C Reactive protein to check for Gastrointestinal Inflammation (which can be caused by the metabolites produced by Bacterial Overgrowth and cause further mucosal damage including Autoimmune disease or dysfunction causing other equally serious problems).
A D-Lactic assay if suspected can be performed by your local Microbiology (if they cannot do this they must separate out the plasma within one hour of taking the blood, possibly freezing it, and send it to somewhere that can run this test. Or Blood Gasses including anion gap should be performed if your daughter is extremely unwell or has breathing difficulty. Ask for D as well as L Lactate).
You have to remember that Bacterial Overgrowth is always secondary to another underlying problem, even poor motility (due to the use of analgesics. Diabetes) etc.
Secondly does she have neurological symptoms, as well as fatigue and weakness?;
D-Lactic acidosis is one form of Bacterial Overgrowth and more complex because there is a lot of controversy (including that it may have been started by probiotics, antibiotics and even acid suppressants or proton pump inhibitors, for things like Helico-bacter infections which approximately 50% of the population will have at some point).
Whether Bacterial Overgrowth or D-Lactic acidosis, you have to starve the Bacteria of their ability to produce poisons or neurotoxins, because of where they are abnormally fermented in the Small Intestine. Dr. Myhill recommends a Paleo Diet for Bacterial Overgrowth. Please see her video and read her page on fermenting gut and bacterial overgrowth. There is also a FODMAP diet and you may have to experiment. But significantly lowering Carbohydrates and Simple sugars is at the heart of these diets.
The recommended D-Lactic diet is Low Carbohydrate, this means 10% max, But;
To properly verify at home, you need to cut out all Carbohydrates and Sugars altogether for a week and see if she feels better. Eating meats , fish, poultry, hard cheese, eggs. Very little fruit such as a handful of blueberries. Salad, low Carbs, Veg and Tomatoes. Breakfast of Bacon and Eggs, Tomato, Mushrooms. Low Carb Yoghurt (Milk and Yogurt contain lactose which is a Sugar and may also need to be cut out or changed for a non lactose Milk Substitute, but I have continued with these). The Low Carb Diet is also an optimum diet to live on for Diabetes and for general health, but you must check with your Doctor first.
The trial is to cut out Carbs and Sugars altogether and derive energy from Meats and Fats with selected salad and vegetables.
NO; Pasta, Wheat, Rice, Potatoes, Cereals, Cakes, Bread, etc. These ferment to different metabolites including D-Lactate depending upon the Bacteria.
(your daughter may be able to have up to 10% Carbs later, but will have to cut out the above if she responds well).
Bacteria thrives on Carbohydrates and Sugars, but not Fats, so fat and meats are used for energy instead of Carbohydrates. Any Carbs will feed the Bacteria, so for the test No Carbs or Sugars (blueberries in small amounts should be OK and possibly a handful of low Carb nuts). Later on a very low Carbohydrate diet, your body may cope with low levels of D-Lactic acid and other metabolites.
Don't expect a miracle the next day! With D-Lactic symptoms or Bacterial Overgrowth It may take 3 days to stop the symptoms, 4 at the worst. It seems like a lifetime. You have to adhere to the diet as though your life depends upon it. There should be no harm caused by such a diet, but because your daughter is very unwell you must OK this with her Doctor first in case she has a condition requiring Carbohydrates etc. She could have a number of underlying conditions causing Bacterial Overgrowth.
Just lowering Carbohydrates helped with other ME/CFS problems, I also had periodic Hypoglycemia which may have been due to the Bacteria competing for my food or due to the effects of the neurotoxin at the mitochondrial level, where D-Lactic acid depletes the transfer of energy and use of available glucose, causing severe weakness and fatigue during exacerbations (which for me could greatly vary and be short and extreme, or be prolonged and severe and fluctuate for months with intermittent remissions).
Using Antibiotics such as Metronidazole would stop my symptoms for months at first, but the Overgrowth always came back. Metronidazole is a known Antibiotic for D-La (I did not respond well to Rifaximin or Neomycin), but this all depends upon the Bacteria involved. If your daughter responds to Antibiotics is also a clue.
Metronidazole is also a very good anti-inflammatory drug.
I can only wish you the best and pray that she will get better.
Paul.
