PubMed published a study in August 2014 on the link between Helicobacter pylori infection and dementia – specifically non-Alzhiemers dementia.The conclusion of the study was “that HP-I may be a critical risk factor for the development of non-AD. Further investigation, including clinical trials, to examine the microbe-dementia connection may provide further proof of the association between HP-I and dementia”.
So here we are talking about the microbe-dementia connection. An issue I was trying to raise over a year ago (in March of 2014) as something needing to be explored for mom. We know she’s been diagnosed (I believe in 2010) with Lady Windemere Syndrome (MAC infection of the lungs) – a microbial infection.
My own research led me to discover that a MAC infection can become dessiminated to both the gut, and the brain.
Its argued that this only happens in the case of AIDS patients who have MAC infection. Now can we really know that for sure? With all the new discoveries constantly being made, should any one in the medical community really be saying that quite so unequivocably?
Mom clearly has serious gut problems, which interestingly always seemed correlated with the development (and the ebbs and flows) of her cognitive issues – something I’ve been expressing to doctors for years – since 2010 (potentially as far back as 2009), long before she became diagnosed as “demented” ( I HATE that term).
Yet every test the doctors and gasterntologists ever run always come back normal. Now, how can that be in someone so sick, displaying such severe symptoms??? And why do they not question this further? How can they be comfortable coming up with no explanation for ANY of her symptoms (gastric or cognitive), and sending her on her way? I know why. They only know what to do with the text book cases. If not a textbook case, they dont even know where to begin looking – and if they did, it would be a full time job (like its been for me). And they have other patients. They cant invest that kind of time into one patient. So she is a casualty.
Last year (March 20013) she had a gastric bleed from the rectum from which she nearly died. They could not stop the bleeding, gave her multiple transfusions over the course of hours – it was bad. I’ll never forget being escorted from her side in the emergency room to the “family room”, where the emergency room doctor prepared me for the fact that I might have to make some hard decisions, and I might have to be prepared for the fact that they would be unable to stabilize her. And then a miracle occurred and she had a miraculous recovery (thats another story all together!). But nonetheless she spent close to a full month(3 weeks) in the hospital recovering under doctors care.
And still, they could find nothing wrong with her. So what caused all that gastric bleeding then? The did not know. They found nothing. Again, I ask, how could this be???
So here’s my theory.
They have continuously found nothing, because they were looking for all the normal causes of her gastric symptoms. Where they looking for MAC bacteria in her gut? My guess is they never suspected that, so they never ran that test. (I have yet to get a real answer from her docs on this. Any time I bring up the MAC infection disseminating to her gut, I am told firmly, “Oh no. That only happens in AIDS patients”. And again, I am thinking to myself, “Oh really? And how can you be so sure?”. It only happens in AIDS patients until we diagnose the first non-AIDS patient in whom it has happened.
As a matter of fact, in my own basic internet research, I came across the pub-Med papers discussing the discovery of disseminated MAC infections (to the gut) in non-AIDS patients. I guess this isnt widely known yet, because my mother’s gasterentologist insists it is impossible when we have inquired through other physicians (including an emergeny room physician). End of story.
Well, it looks like we have a problem. Because her gasterontologist is boldly stating something that medical papers published by the National Institute of Health of the US government say to be otherwise.
Not only can MAC infections disseminate to the gut, according to the research I have done, they can disseminate to the brain. Which could explain why mom’s dementia has manifested, and continues to manifest, in very atypical ways. She’s not displaying like the typical dementia patient, because she doesn’t have any of the typical types of dementia. An infection or bacteria in the brain is more consistent with the strange way her dementia has presented all along. Even her doctor said in the early stages that what she had looked much more like delirium than dementia.
The MAC infection theory could also explain why, even when she appeared to me in the advanced stages of dementia clinically, her CT scan was coming back showing a relatively normal brain for a person her age.
If the problem is MAC bacteria in the brain, I suspect that it would not show up as structural changes on the brain as can be seen on a CT scan.
We need to be checking for MAC bacteria in her brain and in her intestines, gastric system. But I don’t know how to get that done.
I realize as I write this, that this is part of why I have such tremendous emotional pain over what has happened to Mom. There are no explanations here. She is in this state and I still have never been told why. Instead, according to the medical tests, Mom is healthy as a horse – despite what is happening outwardly both in regards to her stomach and her congition.
And its just being left at that. This is my MOM we’re talking about here! MY MOM! And she’s just being left like this. With no answers. And no cure. Not even a treatment aside from the integrative medicine approaches that I had to come up with on my own. Which, were it not for that, she would have died last year. Because when she finally was released from the hospital after her 3 week stay there last spring, it wasnt long before she was deathly ill from stomach problems again. And “I” figured out, in desperation, how to control that through over-the counter pro-biotics and herbal supplements for controlling intestinal fungus (candida).
THIS is such a source of pain. We have been completely let down. Abandoned. She is in a state and exhibiting symptoms that they can provide no explanation for – and she’s being left there. At least pursue it until you know what it is. Dont just leave her like this!
Dont leave ME to figure all this out! I dont have a medical degree!!!! I’m at a huge disadvantage here!
My mom deserves better than this. MUCH better. She deserves to be well, and healthy, and to live her life with dignity. Not walking around wearing a diaper, babbling like an infant, dependant on caregivers to do some of even the most basic things for her, and sometimes breaking down and weeping amidst the words, “It isn’t fair, it isn’t fair. I just want things to go back to the way they were before”.
You’re right mom. It ISN’T fair. And I am so sorry. But I will never give up on you. I will keep looking for the answer because I can not stop. Because, as I always told you, you were the best mother anyone could ever have. You are the kindest person, with the most generous spirit, and YOU DON’T DESERVE THIS. So I’ll keep searching.
Well, it looks like I kind of digressed into more of a personal journal entry here. Whatever. It is what it is.
I’ve just convinced myself that I’ve got to resume this with the doctor. I backed down in defeat and let this drop, completely discouraged last spring when she wound up in the hospital and I gave the emergency room physician my theory. Her called the gasterentologist, and in 3 minutes was back to poo-poo the theory and shoo me off. Three minutes hardly seems long enough for the gasterentologist to even consider it, let alone research if what I was saying was possible. He said it wasnt. But I’ve seen the pubmed research that cites actual cases which PROVE it is possible.
But last year at the end of all this, I felt so defeated. After mom had been in the hospital for close to a month, and then shortly after there was another emergency call and day at the hospital. I was so worn down and I gave up. What do you do when the specialist tells you NO. Where do you turn next.
I still dont know. But last year i was so despondant and depressed and defeated that I just surrendered. But now, as I;ve done more and more research in reent weeks, and I’ve come across notes I made throughout the years that demonstrate that there is something DIFFERENT going on here, I feel re-inspired to take another crack at pursuing this thing and pushing on the docs a little, as stressful as that is for me (doing battle with the doctors who are supposed to be there to help you really is a stressor).
I find it interesting that Moms gut condition is largely under control (not gone by any means, but manageable) by an over the counter herbal blend for treating candida (Yeast overgrowth in the gut). This is what keeps her from passing out like she did on July 1, 2013 when the paramedics almost couldnt revive her (yet once again, docs found nothing after 8 or more hours in the emergency). As long as we give her that – she’s stable. If we think maybe she doesnt need it, she relapses.
And again, my research indicates that yeast also can travel from the gut to the brain, causing dementia-like symptoms.
Whether she has yeast, or MAC, I dont know. But either is an strong theory to go on. She certainly responds to the treatment for yeast. Maybe a MAC bacteria in the intestine would as well. Often a particular treatment doesnt just work for one thing, it works for other as well.
But obviously there is something there. Despite all the medical tests that show nothing. Because I give her a treatment for gut yeast, and she does much better. Which is much better than the docs where able to do for her.
I will give her primary care physician this much – I really dont fault him – he is not the specialist – and he has acknowledged that the testing they currently have available is simply not sophisticated enough to reveal the whole picture. Obviously there is something seriously wrong. There are things the tests simply dont test for.
I have heard that that even includes something as basic as intenstinal yeast. I think they have some test for it, but its not as sophisitcated as even what naturopathic doctors use. Problem is, I havent been able to locate a really knowledgable ND, I mean on an advanced level, because I think that’s what it is going to take – here in our local area.
I so want to solve this. I so want an answer. I need to know if this is something treatable. Because if it is… she should be getting treated!!!
Hang in there mom. I’m going to give this a try again. I will never give up on you. XO