My personal (well informed) theory about my mom’s dementia is that MAC bacteria has entered her bloodstream, spread to her intestines, and to her brain. She was diagnosed with MAC on the lungs, even though she had/ has no lung disease symptoms, when the doctor finally investigated why she was so uncontrollably losing weight.
I’ve since read that MAC can cause such inexplicable weight loss, something our family doctor also mentioned after the MAC was found. Of concern is the fact that when the weight loss was mentioned to the lung specialist, he stated it wouldn’t be a symptom of the MAC. That in itself draws his credibility into question. He should know that weight loss IS a symptom of MAC. He is a well respected lung specialist in our city, but I suppose that doesn’t mean he actually knows anything about MAC, as it is quite rare.
We had made an inquiry with him some time ago, as to my concern and theory that the MAC bacteria may have traveled to both the gut, and the brain, causing both my mom’s inexplicable, severe and chronic gasterointestinal symptoms, as well as her very atypical dementia. He very quickly insisted, no, it was not possible – it was not related. MAC, he said, would not spread to the gut.
Really? Because I have read several reports from well respected medical resources which state otherwise. In fact, in AIDS patients, it is very common for MAC to disseminate to both the gut and the brain. Yet he says, impossible.
I obviously did not have confidence in that claim, but what can you do when your doctor simply doesn’t know better? And as I think back on this now, why should I have any confidence in his statements, when this is the same “specialist” who didnt even know as much as our family doctor (and not the best family physician either) – that MAC can be responsible for uncontrollable weight loss?
Once again, the medical profession has failed. We have been so, so let down. I am absolutely positive that my mom’s dementia was treatable, curable, and that it was most likely related to the MAC. If only someone had bothered to listen. And that’s after we finally managed to get them to pay attention to her symptoms at all.
So now… onto my latest finding. Despite the fact that the lung specialist claims that MAC is only a lung disease, and the MAC bacteria does not affect any other part of the body but the lungs… I just found THIS — a post (below) on a message board by a patient who has MAC bacteria on the bone in the ankle.
I remain convinced that MAC bacteria stole my moms mind, and her LIFE. And broke my heart in the process. And the doctors stood by and did NOTHING. INEXCUSABLE.
Mycobacterium avium complex (MAC/MAI) in the foot (bone)
My name is Jenny and I am writing here on the behalf of my father; My father is 59 years old, he had a surgery done in 2007 for a Neuroma on his foot (his first and only surgery ever) after that; approx 4 months of complaining and his doctor ignoring him, he went to see another; whom then took and x-ray and said he thought he saw was a fracture. A few months went by again, with my dad wear a medical boot to heal the fracture, a lump started to develop in the spot and some type of liquid kept coming out, his doctor thought it was a ganglion cyst and schedule an operation to remove it. After the surgery, a few more days went by and the lump began to come back, then his doctor did another surgery to remove the “garbage” he called it and a part of his metatarsal bone, to get rid of the bacteria in the bone; where he assumed it was (I’m guessing). He sent it in for a culture to be done. The result came back that my dad had two bacteria’s/infection’s (not a cyst) in that spot and what he thought was a fracture was now – sign’s of bacteria on the bone. One bacteria was a regular bacteria and the other was initially unknown and my dad had to stay on an at home IV (Levaquin) until the culture grew out the other bacteria (6 weeks).
When the bacteria grew out, his doctor told him the bad news, he had developed the MAC (Mycobacterium Avium Complex Disease) bacteria in the bone of his foot. That he would have to be on heavy antibiotics for a year at least.
Now we are almost dealing with this for two years. His wound is still leaking and he is taking his prescribed medications (clarithromycin, ethambutol, and rifampin). He had an MRI done on Aug 20th 2008 and it show’s the he still has the infection on his bone (that was partially taken out)…
So after 3 surgeries, he doesn’t know what to do anymore… We need any help/advice/guidance we can get; so far it’s been hopeless.