"WOW!" moment

Remember in my last blog entry I discussed food sensitivities and leaky gut syndrome (LGS) and how I thought they are at the root cause of my illness? Well earlier today I ran across an essay on this very topic, and it put together a lot of pieces for me. It is entitled simply, elegantly: what you need to do and why (shown below), and written by a member called "Catseye" from the Phoenix Rising CFS forums. Do not be put off by it's length as its an easy, non-technical, and absolutely essential read.

I would quit wasting money on expensive doctors' tests until you get a CDSA done by a qualified health care practitioner. That means probably NOT a medical doctor. They can't treat CFS so don't waste your money. I was able to manage most of my symptoms somewhat with supplements, but you should try to fix the main problem while you are supplementing otherwise you are wasting precious time.

Read this whole post before you roll your eyes and dismiss this as "not my problem". I did that and it cost me a few years of agony. Don't make the same mistake.

CDSA is comprehensive digestive stool analysis. You take some samples of your stool, put them in specially prepared tubes and ship it to the lab. It's not my favorite thing to do on a rainy day, but they saved my butt. This test can show:

-how your pancreas is functioning, like if it is producing digestive enzymes and stomach acid in sufficient quantities

-if the liver is being overwhelmed with toxins, as well as the kidneys

-it shows, in great detail, the gut flora: which good and bad bacteria you have, at what levels, and also yeasts.

Know this fact:

Virtually everyone with CFS has intestinal dysbiosis and intestinal hyperpermeability. The CDSA is the test that can finally show that yes, we are a mess, and it's no wonder we feel like we're dying! Finally, a test that shows clear evidence for all our nightmare symptoms. How many times have you gone to your doctor for tests convinced that something will show up because you feel like you're dying? Well, because they didn't look in the right place, you were probably told to "see a shrink" because "everything looks fine".

What is dysbiosis? It's:

Where the microbial colony becomes unbalanced. Can happen in the mouth, the gut or the vagina.

Yes, giggle giggle on that last word, right guys? But us gals who have had yeast infections are not laughing, we know the personal agony of dysbiosis down there. But at least we have pain and itching and an unusual odor (again giggle giggle) to make us aware that something is amiss. Just imagine if you couldn't feel any discomfort or detect any odor and it went unchecked for a long period of time. That is exactly what happens when dysbiosis occurs in the intestines.

What is hyperpermeability? It's:

when the lining of the small intestine becomes damaged, thereby allowing the passage of damaging substances into the bloodstream.The medical profession calls it "gut mucosal barrier dysfunction" so it's not like they don't know about it, it's just underplayed.


If you ask a medical doctor about these things, he will blow them off because they are things he is not familiar with. He may even go so far as to say that intestinal hyperpermeability (aka leaky gut syndrome) does not exist, that it's impossible - that the gut lining is impenetrable by toxins or bacteria and has various checks and balances installed to make sure it is not easily compromised. And he is absolutely right, there are things that guard the integrity of the gut lining - good bacteria. If you end up with dysbiosis in the guts for whatever reason (bad infection, bad diet, use of antibiotics, poisoning, etc.), this means too much of the good bacteria has been killed off and they can no longer do what they do - help digest our food, make certain vitamins and other enzymes we need, and - most importantly - guard the integrity of the gut lining by keeping bad bacteria in check. Bad bacteria and certain foods can cause inflammation which is harmful to the gut lining.

For some reason, doctors seem to think this can't happen just because they've never really studied it or heard of it before. And doctors are trained to be confident and have answers, not to say stuff like "I'm not really sure about that, let me look it up" or "gee, I've never heard of that before, I'll go do some research in my spare time". Doctors have certain protocols that they follow, using them to sell FDA approved drugs. And you can't fix a bad gut and overwhelmed liver with drugs. The liver needs to be working to detoxify drugs. That's why many of us develop alcohol and drug intolerance. Because the chemicals the liver makes that are in place to detoxify these substances are not there - the poor liver is struggling just to keep the blood fairly clean and do the minimal life sustaining functions.

Gut dysbiosis will affect the entire body, from head to toe. Once the bad bacteria have taken over, you're in big trouble. But it will take awhile to fully evolve to CFS. You slowly begin to digest your food less and less; that means you aren't breaking the food down properly and are not assimilating the nutrients to the rest of your body. You start making less and less of the vitamins and enzymes that the good bacteria normally make. Other metabolic systems start to suffer, a gradual onset. You may even have allergies and hay fever, and blame them on cats or pollen or some other trigger when it is really undigested food particles confusing the immune system and making it hypersensitive. Casein (dairy protein) is the prime culprit here, followed by gluten (wheat protein).

The gut lining no longer has the protection of the good bacteria in sufficient numbers and the bad bacteria start to grow in numbers. They eat the good bacteria, BTW, so if you're in really bad shape, just taking some probiotics is not going to work. I did this and all I did was feed the bad bacteria with them because I wasn't eating the proper foods. Now the pores in your gut lining that are normally so small that they only let through properly digested food particles and nutrients are now so large that anything can leak through: larger undigested food particles, bad bacteria, amoebas, basically anything that is in the intestines can now enter the bloodstream unchecked.

The liver becomes completely overwhelmed trying to filter out all the nasties coming through it; so it begins to lose some of its functions like converting vitamins to bioactive forms: example - folic acid is converted into folate, very important, B5 is converted into pantethine, very important. That's why folate is part of Rich Van K's methylation protocol - the liver needs to turn folic acid into folate and folate is needed for methylation - crucial for the body's functioning.

The liver is involved in hundreds of important bodily functions so I'm not going to overwhelm our brains by listing more of them here. We all know how important the liver is, we've all heard of some awful cirrhosis stories. Not that cirrhosis will be an issue for us, that is the presence of scar tissue and our livers are not hindered by scar tissue, but by being overwhelmed with toxins and undigested food from the intestines.

Other metabolic systems become disturbed - the process of digestion is now seriously compromised and becomes involved in several vicious circles of malfunction. For example, you need zinc to make stomach acid and you also need stomach acid to absorb zinc. So you can't absorb enough to have it to make the acid you need to absorb it in the first place. There are several vicious cycles like this that erupt and throw you down into a deep, deep hole. I could go on and list several substances and metabolites that are involved in vicious circles but you get the idea - once it has started, you are stuck in it.

If you are thinking that your digestion is working fine and this can't be you, you're wrong. There are no obvious signs of indigestion like you would think - stomach aches, diarrhea, food in your stool, massive gas, bloating, etc. Everything can be going in and coming out just like normal, with nothing to make you think anything is wrong in there. This is why I dismissed its importance in the beginning. Unless you have a CDSA done by someone who is qualified to interpret it, you have no idea what is going on in your own intestines. Did you also realize that the heart of your immune system is located in your intestines? That many of the components that the immune system uses are produced there? That a healthy flora of good bacteria are responsible for a properly functioning immune system? See how this is all tying together with our illness?

I've trying to be brief here, realizing that most of us have brain fog and can't read too much or comprehend too much in a single sitting. I'm trying to explain how important the gut is to our health so you can see why it needs fixing. The worst thing you can do right now is dismiss this for whatever reason - it can't be my gut because it doesn't hurt, my doctor would have realized this, it just can't be because I never heard of it, I already asked my doctor and he said it was ridiculous, I can't believe indigestion is affecting my ability to think and feel good, I can't walk but I can eat so how can it be messed up? I guess I could think of some more reasons, but you get the point. Just for some answers to the above:

it can't be my gut because it doesn't hurt -

These things happen silently, like high blood pressure, you can't feel it. Can you feel stools moving through your intestines all the time? I had severe dysbiosis and was shocked when I realized how severe it was. I was also very pissed off because if I had realized this at the way beginning, I could have searched for answers and done something about it before I got so bad and lingered that way for years.

my doctor would have realized this -

Well, if he hasn't done a CDSA for you and if he hasn't gotten special training in how to interpret it, then no, he wouldn't realize this. The common complaints that would warrant any type of stool analysis are the complaints we would have if we were acutely sick with salmonella or something - things like diarrhea, vomiting, excess gas, abdominal pain, severe bloating, stomach ache, stomach feels like it isn't emptying, etc. And even then, if we're lucky, we would just end up with a simpler, noncomprehensive test of the stool, like tests that check for parasites; but then they just prescribe a single drug to go after that parasite, not a comprehensive plan to restore the proper flora.

The thing is, dysbiosis doesn't have to be an acute, immediate crisis that gives you symptoms like this. As you can already see, our symptoms are severe, but they are also vague and hard to explain and, even worse, slightly different for everybody. We are simply not having symptoms that we would normally blame on any sort of intestinal difficulty. Doctors do not learn about CDSAs in medical school. If they did, they would not make as much money but that's for another thread.

it can't be because I never heard of it

Probably the first time you've ever heard of it is when you started googling for CFS and it came up here and there. But nobody had any hard and fast techniques for getting rid of it, merely some vague dietary changes and some supplements. And the list of symptoms that say you have it are endless. Just like the ones for CFS! The CDSA test eluded me for years, if I had only known about it sooner.

I already asked my doctor and he said it was ridiculous.

This is the same guy who has probably suggested that you see a shrink because all your routine tests are "normal" and show that nothing is wrong with you! That's because their tests are designed to find specific markers to prescribe specific drugs for you, NOT to honestly gauge your degree of health. Even the liver enzyme tests may come up normal. Even if they are abnormal, doctors don't really know anything about the effect of severe dysbiosis on the liver. If they did, we'd have heard about it.

I can't believe indigestion is affecting my inability to think and feel good

You have to realize this didn't happen overnight. And remember those awful pictures of the holocaust? They were starving, but still able to stand up, some of them. But we have been bedridden, some of us. It's one thing to deprive someone of calories, but we have been deprived of nutrition. Can you imagine what would happen if you lived on snicker bars? Did you see the movie about the guy who ate McD's for a month? Remember how messed up his liver got and the doctor begged him to stop after just 2 weeks? With us, digestion is still happening to a certain extent - you are able to digest the sugars and extract the calories from the food - but not the very important nutrients. So it's like we've all been living on sugar for awhile. Our bodies have been starved of nutrients and this deprivation has gradually worsened until the failing of multiple metabolic systems has resulted.

I can't walk but I can eat so how can it be messed up?

You can't walk because certain chemicals in the body are not there to give you energy and to scavenge the harmful free radicals that have resulted from energy production. I can also tell you what supplements to take to increase your energy, but that's another thread. Digestion is suffering, too, but it's just not obvious. That is why this plan for treatment has eluded everyone.

You have to realize how complicated digestion and the intestines are. You make enzymes and acid to digest the food. Beneficial bacteria have to be there in great numbers to help process the food and keep bad bacteria in check. You have to be eating nutritious food for the body to obtain the nutrients it needs. By the time you have CFS, healthy eating will not help you because you have now lost your ability to extract and use the nutrients from your food. You may as well be eating snicker bars because that's all your getting: a bunch of sugar and minimal amounts of protein, necessary fats and nutrients. Even to eat a multi vitamin powder is not going to solve everything because you still have absorption and assimilation issues. It will certainly help you feel better, but it won't fix the problem by itself.

The best thing you can do is try to find a doctor or health care practitioner who has experience with CFS, NOT a medical doctor with experience in CFS. Because the doctor works by attempting to relieve symptoms, NOT by tracking down the root cause and fixing it. If you have some severe symptoms like lack of sleep or severe pain, then you may have to see a doctor for these things, maybe even things like thyroid medication. But he will not be able to diagnose and treat your dysbiosis and hyperpermeability, which are the keys to your ill health. For that, you absolutely need someone who has gone to school to learn how to fix a diseased body and bring it back to health. You don't want a doctor that has studied "medicine" because that's all he can give you and that's not what you need. Just knowing who can help you is half the battle.

One thing most people don't really understand is that there are two types of treatments offered by the medical profession and this misunderstanding is where people get confused and get in arguments over it. There are treatments that manage an immediate health crisis, like heart attacks, car wrecks, broken legs, etc. We call this crisis management. And then there are treatments for chronic diseases like CFS, cancer, arthritis, etc. Doctors, esp in the US, are great at crisis management - they can restart our heart, put us back together after our leg was torn off by a car or sew a finger back on if we got a little too careless with our table saw.

But doctors' treatments of chronic diseases are ridiculous, a ripoff, and are guaranteed to make you worse over time. They only treat symptoms, not causes, and they only want to find a drug for you. Diet is not something they learned about in school and diet is behind virtually every chronic disease. Think diseases are hereditary? Know what else is hereditary? Diet - you usually end up eating what your parents did. And if you do, you will get basically the same diseases they got.

It does appear that even if a health expert is found, there is a matter of the cost. Depending on how messed up you are, it could get quite expensive. And insurance probably isn't going to cover much of the treatment. It may cover some of the tests, but you certainly aren't going to be reimbursed for the food and supplements you are going to need. In cases where somebody has no money, make sure they have someone who can really fix their problem and then consider borrowing the money or racking up credit cards. If you get back to normal, you can always work again and pay off the debt.

If you have the right person, the chances are excellent. But it may take a long time. It took me a year just to fix the dysbiosis. That was on a highly restrictive diet and lots of supplements, including some supplements to kill off bad bacteria and yeasts. And I still have more work to do, but one or two things at a time. For now, dysbiosis and hyperpermeability are things you should familiarize yourself with. You have to do lots of homework so you can understand what you need and why. One thing that will help you google is to include the words "natural remedies" in your searches. This will exclude most of the medical profession based pages on symptoms and illnesses which are basically useless to us.

For how to find a doctor, I found mine at becomehealthynow, so I know he is qualified, and for other lists check out beatcfsandfms.org. They have info on fibro, too.

Do not waste your time chasing down different "diseases" that doctors are finding in your body. I'm sure the worst CFSers will have heart issues show up, MRIs will find things, etc. You can chase all these down, but it is a colossal waste of time and especially money. That is what doctors do to get rich. They don't look for or find the root cause. I'll get into that in another thread. 

Reading this earlier was a "wow moment" for me as it reveals a path forward. Namely, to have this CDSA test done, and find a qualified health practitioner to interpret it. Up til now I had a vague sense of Leaky Gut Syndrome and the problems it is causing, but no clear idea of what to do about it. Now I do. So thank you deeply "Catseye", whoever you are.