Prove my cfs theory - drink milk

[TheMoonIsBlue]

Mutaflor is not even available for purchase to those living in the US as far as I know.

FDA changed its classification or something.

 

[Xandoff]

XKS201..............what's up Doc. I cant drink milk because since I've had ME CFS I have been lactose intolerant. I drink Almond Milk with great results. I will skip the stool sample as well. Really XKS201...what's up, where all friends here you know. En-lighten us please.

 

[xks201]

Of course you became lactose intolerant after you developed CFS. IT IS THE REASON YOU HAVE CFS. The lactic acid bacteria go to town generating lactic acid whenever you drink milk. Pretty much everyone here is milk intolerant. I think there is something to be said for at least that. Jesus cut me some slack guys unless anyone else has any other IDEAS. Everyone on this forum who I have seen test for d-lactate in urine was positive for excessive amounts. Most people here are dairy intolerant. IM JUST TRYING TO DRAW SOME LINES AND NOT BE HOPELESS. Not only that, but I see good results in myself sticking to a high fat-high protein diet. Granted more serious measures may also be required as treatment. I don't know all of them yet.

Not just lactobacillus lactis generates lactic acid. Many do. I guess you are all making me revise my hypothesis. You all have a deficiency of lactic acid utilizing bacteria, hence gumming up the kreb cycle and producing insulin resistance/sugar intolerance.

 

[CJB]

My grandparents drank milk all of their lives - one set owned a dairy farm and my grandfather on the other side worked at a creamery. Both grandmothers lived well into their nineties. Healthy and able. My mother is 83 and is healthy and able. Dad lived to 78. I have siblings, cousins, aunts, uncles who are healthy and able. I'm the only one with CFS.

It's patently illogical to blame this on a single food. You seem to be mentioning Mutaflor in every post. Do you have a garage full you need to sell?

 

[TheMoonIsBlue]

There are lots of people with"CFS" that haven given up all dairy and eat strict paleo diets/ high protein low carbs no simple carbs, and are still very ill. Why then?

 

[xchocoholic]

Fwiw, my lactobacillus was low on metametrix. And I'm not lactose intolerant, I'm allergic
to casein. I get black eyes from dairy and nothing else. No digestive problems at all.

Gluten kicks my ass tho .. Tc .. X

 

[Sushi]

IM JUST TRYING TO DRAW SOME LINES AND NOT BE HOPELESS. Not only that, but I see good results in myself sticking to a high fat-high protein diet. Granted more serious measures may also be required as treatment. I don't know all of them yet.

Not just lactobacillus lactis generates lactic acid. Many do. I guess you are all making me revise my hypothesis. You all have a deficiency of lactic acid utilizing bacteria, hence gumming up the kreb cycle and producing insulin resistance/sugar intolerance.

Glad you have found help yourself, but maybe you could do some more in-depth reading here before you state your theories as fact and say that they apply to everyone here.

I don't think anyone who has replied to you is feeling hopeless. There are many here who have been researching ME/CFS for many, many years, have tried many, many things, had many stool tests, done extensive work with the gut and gut bacteria and have come to different conclusions than you have.

Sure, the gut is involved--most of us know that, but that is a long way from causation. This is a very complex illness, we have plenty of other tests in our files showing abnormalities in areas other than the gut--viruses, complex infections, partial methylation blocks, neuro-immune dysfunction, etc. Were the solution so simple, few of us would be sick anymore.

So yes, if you read here you will see that we do have other ideas and have had success in pursuing them.

As far as diet, probably most who have been on this forum for a while will have tried modifying their diets in the ways you suggest as well as many other ways--we are old hands at working with diets, stool tests etc.

Forum members are likely to react to statements like, "Of course you became lactose intolerant after you developed CFS. IT IS THE REASON YOU HAVE CFS." This is your hypothesis and it would get more respect if you stated it as such rather than as a fact that applies to everyone. As some have said, they are not lactose intolerant, their stool tests do not show a deficiency of lactic acid utilizing bacteria.

Please respect the fact that there are many, many theories about the origins of ME/CFS and we appreciate more ideas but not assertions like some of those you have made recently.

Sushi

 

[TheMoonIsBlue]

There was someone not long ago who kept posting here that CFS was caused by undiagnosed dental infections. Because that was the root of their illness and then says like "so now do you still all think it is a virus and we need drugs?" Well, yeah, for SOME people yes. Some, no!

If people are poking a little fun, it is because they have probably heard 100 different theories on the cause of "cfs" because one person discovers one thing was causing their fatigue. Then they are insistant that everyone else is sick for the exact same reason. If a person discovers their cfs was really celiac, then everyone must have celiac. Or "low thyroid" people insist everything is from low thyroids. Or vitamin D is the cure for FM. And so on.

Im happy when anyone discovers what is making them ill and shares it with others.

Are you no longer having fatigue since ditching dairy and carbs/sugars? WHat other symptoms did or do you have?

Where are you getting Mutaflor, since people in the US apparently can not buy it anymore? Why or do you think only mutaflor is the answer, is this unique in a way no other product is? I dont know why it was taken off the market in US.

 

[TheMoonIsBlue]

Lots of other people have other ideas as well, all is not hopeless, and I am sure many here will be willing to share their ideas and treatments that have helped. Have you read the Methylation section, and the people with stealth herpes viral infections, and so on...Like I said before, no way is everyone here ill for the same reason. No way does everyone have the same illnesses or problems. Mixed bag.

 

[ukxmrv]

I can't see what hope you are offering to a group which may have disparate causes. Because I'm from the time of epidemic ME I tend to look that theories to fit around that.

When I developed ME, as an acute viral onset, dairy products didn't feature very much in my diet and it was easy to give them up as part of the process of seeing how diet helped my symptoms. Nothing significant to report.

Took probiotics of many different types for over a decade and they helped with digestion and bloating. Then suddenly they stopped working but didn't make me worse. Tried some MAF314 yoghurt recently which did help my digestion and gave me some more functioning temporarily.

Not had any testing to help with your hypothesis. Can't really see how I can proceed with this.

 

[Athene]

XKS, what is your theory about the reason why your immune system doesn't rebalance the bacteria in your gut to maintain a healthy mix of flora?
We all seem to have something way off the right healthy balance, and the only common factor really is that our immune system is not managing to sort everything out which it DOES do in healthy people.
So don't you think the underlying problem has some connection with an impaired immune system? Although we know we have a variety of illnesses here, I think the vast majority of us have discovered that immune dysfunction is one of the major common factors.

 

[xks201]

My theory is that the body is so weak because lactic acidosis will create insulin resistance that the immune system has no energy to operate to the the blockade of the krebs cycle. http://www.ncbi.nlm.nih.gov/pubmed/12110527

 

[justy]

Hi xks201 - just wondering how your theory fits with vegans who develop (catch?) M.E? I had been strictly vegan for a number of years when i first became ill. Since then have eaten and not eaten dairy products with NO advantage either way.
My best treatment so far has been B12 injections.
Ideas?
All the best, Justy

 

[Athene]

My theory is that the body is so weak because lactic acidosis will create insulin resistance that the immune system has no energy to operate to the the blockade of the krebs cycle. http://www.ncbi.nlm.nih.gov/pubmed/12110527

Insulin resistance doesn't cause a reduction in overall white blood cell count, lowered CD57, neutropenia, or any of the other immune system abnormalities that people with CFS have. Neither does a block in any stage of the krebs cycle.

 

[snowathlete]

I drink milk by the truckload. Love the stuff, always have.

Im in the UK, and the co-op have £2.50 for two 2L bottles of Cravendale. Morrisons have them at £1 each at the moment too.

Latte, milkshake, on your cereal, on its own, its all good baby. I say drink it up!

 

[taniaaust1]

Of cause you become lactose intollerant after you develop CFS

I myself do have insulin resistance but I dont have lactose intollerance (I have been tested for lactose intollerance and my result was negative). My milk issues are for other reasons (hyperinsulinemia.. the insulin resistance and another intollerance to do with milk). Interestingly my grandmother does have lactose intollerance but she does not have ME/CFS. I think I have an uncle too with lactose intollerance..but he doesnt have ME/CFS either. (I have celiac disease running on that side of the family and lactose intollerance is common in celiacs).

My sister who has been getting CFS symptoms for 2 years now.. she's also been tested and she's like me and dont have lactose intollerance either. (so there goes your theory there). Note..Ive had ME/CFS for 14 years but dont have it lactose intollerance thou I carry the celiac disease gene.. why arent I lactose intollerent then? seeing I have ME/CFS esp with my family history.

And as far as lactic acid goes. Those with ME/CFS studies have shown we end up with too much in our muscles after exercise. It has been found we can have after exercise.. up to 300 times more then the normal amount. (nothing to do with the gut in that study.. I think that lactic acid study was done by the Adelaide CFS research group).

Its a pity this illness isnt that easy to solve..but its far more complex then all this. If the answers were that simple.. it would of been worked out by now.

If you think people are giving you a hard time over your post.. its due to the manner of which you expressed your thoughts. Most of us are sick of hearing about someone who's found something which helped or cured then and then they try to apply their "miracle cure" to EVERYONE else here.
This probably happens at least once every few months.. I think we've heard nearly all and usually many of us have already had that very thing ruled out as being the possible cause.

 

[xks201]

I suppose I was wrong. I will rephrase my theory to say that this is ONE possibility. Thank you all for your input. I am just trying to help by throwing personalized theories out there, though I am mistaken in thinking everyone is of the same category. Fatigue is a pretty broad thing I suppose.

 

[Calathea]

Fatigue is a pretty broad thing I suppose.

So do you mean that this website is for people where the one thing in common is that they suffer from fatigue?

 

[globalpilot]

I suppose I was wrong. I will rephrase my theory to say that this is ONE possibility. Thank you all for your input. I am just trying to help by throwing personalized theories out there, though I am mistaken in thinking everyone is of the same category. Fatigue is a pretty broad thing I suppose.

Now that we all agree it's one possibility of many, I think it is soemthing worth looking into.
It turns out our health system in Canada does test d-lactate in urine afterall.
I know sometimes samples have to be tested right away, can't be exposed to light etc etc. Is this one of those cases ?
Does anyone know of a protocal to test this properly ?

 

[Glynis Steele]

Hi GP,

Not sure if this is helpful to you, it's from the Mayo Clinic. I would have thought that urine collection would take place in a hospital setting. I do know that d-lactate is best tested late afternoon/early evening, I think I've already mentioned this.

http://www.mayomedicallaboratories.com/test-catalog/print/8873

It would probably be best to phone the lab where the test is to be done, and ask them how the sample should be handled, or whether the test needs to be done at the docs or hospital etc? The labs are usually quite helpful.