Excellent news ... a Drexel University team has confirmed Dr Alan MacDonald's findings of bacterial biofilms co-located with amyloid in Alzheimer's brain plaques.
Eightlegsbad, thank you for sharing this. This IS excellent news.
Could it maybe, maybe,maybe be possible between things like this, the IDSA guidelines lapse, and increased activism/awareness that the Lyme community could soon have quite a breakthrough with better treatment and guidelines that are approved by the CDC that actually help/are far more accurate?
Posted by Eight Legs Bad (Member # 13680) on :
Personally, I dont think CDC are ready to ditch their decades-long denial all on their own. However, I do think that certain issues such as the role of Borrelia in alzheimer's, could have a momentum of their own.
If it turns out that Borrelia is causing a LARGE proportion of Alzheimer's cases, and if some families start to seek antimicrobial therapy for their loved ones and roll back the disease - the news will get round, no matter how many journal editors CDC's EIS lean on to suppress the information.
Elena
Posted by paulieinct (Member # 17514) on :
I have been saying for 7 years now, to anybody that would listen, that when this Lyme epidemic reaches a critical mass, we would be hearing about it every evening on the evening news, just like during the AIDS epidemic. It seems like we're getting closer and closer to the tipping point. Are we there yet? Stay tuned.............
[ 02-17-2016, 03:10 PM: Message edited by: paulieinct ]
Posted by duncan (Member # 46242) on :
Miklossy has spoken at Drexel from time to time.
Posted by foxy loxy (Member # 47053) on :
yay!!! but isn't this a little scary? Does this mean all Lyme patients get to look forward to dementia?
Posted by project (Member # 46200) on :
I've come to realize that finding out your health issue is caused by Lyme seems like good news at first but actually comes to seem like the worst news imaginable.
It's just so brutally difficult to recover from chronic Lyme, especially neurolyme. Each spirochete killed exacts its revenge and so it ends up being death by a million cuts as you herx. The psych symptoms from herxing are just unbearable as I'm sure many here know.
This is coming from a relatively young adult who looks fairly healthy on the outside, although 20 years chronic. I wonder how a 70 or 80 year old dementia patient 50 years chronic is possibly going to manage to recover? Seems impossible with the current treatments.
Killing the spirochetes is not that difficult, it's being able to do it en masse and somehow get them out of the body without the herx. I think this is the only type of treatment that could feasibly help patients like this.
I agree that this is valuable research and certainly enlightening, but I think trying to recover a biofilm filled brain riddled with spirochetes late in life is totally futile. I think euthanasia is probably the humane response at that point.
Posted by Jordana (Member # 45305) on :
All Lyme is neurolyme. It's a brain infection and they like it up there.
Horrifying to realize but one thing you should know is that "amyloid plaques"are a response to damage and they go away when the stressor is gone.
Yep, it's true. It's just like "brain lesions", which also disappear. Brains are fantastic at healing themselves, and from what I've read truly *degenerative* brain disorders are pretty rare.
A while ago I read a story about a girl who was born without a cerebellum. She was slow to walk and talk but eventually...she did. The family was from China and of course did not know she was missing her cerebellum.
So...if you can live a productive life without a cerebellum I think euthanasia for elderly Chronic Lyme patients might be a little hasty.
Posted by Jordana (Member # 45305) on :
btw project...I never thought hearing that I had Lyme was good news. I thought, and still do, that it is the worst news imaginable.
Posted by project (Member # 46200) on :
Well many people are initially happy to finally have an answer and assume that it must be easily treatable based on the IDSA fantasy guidelines. Even LLMDs often give wildly overoptimistic prognoses "oh you'll just need to take some antibiotics and some herbs for 6 months". Right.
Some patients have more brain involvement and others have different manifestations. I have had very little joint infection for whatever reason but my brain started to unravel from day 1.
I agree that brains are amazingly plastic, but that healing you describe depends on first eliminating the spirochetes and biofilm from them. This is such a difficult painful process that I think for many elderly dementia patients it would not be worth the agony.
The only viable treatment that I can imagine putting these patients through ethically would involve some kind of nanobots that could potentially kill the Borrelia and then clean it up and so prevent herxing. This is only science fiction at the moment though.
I have suspected that many of these other neurodegenerative diseases are manifestations of hidden Borrelial infections. But this thought has scared me as I think the level of pain required to get better would simply be far greater than most of these late-stage patients would be able to endure.
I think based on this terrible calculus the health of many people is actually completely bankrupt and not able to be salvaged, even if they do find out that it's Lyme.
Posted by Jordana (Member # 45305) on :
Actually one promising therapy has to do with zapping the "plaques" with a precision laser. This along with appropriate ab x therapy might bring some people right back into the world.
This leads me to another thought though. There's been a sort of fad in medicine wherein they're all really interested in "autoimmunity."
It was a fascinating cool thing to study since you had to get really technical with new exciting lab techniques to understand the immune system at that level.
It seemed it was easier to believe that a person suffered from "autoimmunity" than a chronic infection that had somehow made itself undetectable.
Now it seems the tide is turning just a little bit. We have a lot of technology to keep people alive if bits of them fail - heart medicine and kidney dialysis and surgeries and so forth.
These people - all of them in fact -- could be suffering from chronic stealth infection; resulting in conditions that at some point previously would have resulted in death. See? The infection just would have killed them;now they are alive and *still infected.*
I think what this study and others might do is begin to get medicine to start thinking about pathogens again, just in general. Then maybe infectious disease doctors will wake up at some point and stop being so absolutely useless.
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(breaking up text for easier reading for many here)
[ 02-14-2016, 03:38 PM: Message edited by: Robin123 ]
Posted by project (Member # 46200) on :
The focus does need to be shifted away from the current insanity of autoimmunity being applied to every chronic condition. The immune system evolved over millions of years and all of a sudden it's just randomly deciding to attack its host?
It's just typical of the narrow mindedness of most scientists to assume if they can't detect a bacterium, it's not there and so any immune activity is against what they can see, the body itself.
But to my original point, with current treatments I feel the body's immune and detoxification systems are actually doing the heavy lifting to recover from Lyme.
I suspect in many cases patients are simply too far gone, they simply cannot be built back up to the point of being strong enough to eliminate the Lyme and decades of toxicity from their bodies.
It's almost unbelievable to me how much I have had to detox since starting treatment 4 years ago. And I had already been using the sauna twice weekly for the past 10 years.
It's incredibly difficult to recover from long term chronic Lyme, and this is coming from a person who was working full time and able to exercise, ski, etc prior to treatment.
A 50 year chronic patient that has already developed dementia is completely beyond hope with current treatments imho.
Recovery is just so involved and requires adhering to complex treatment and detox protocols over a period of years.
Until we can do something like putting someone under anesthesia and hooking them up to a dialysis machine and so quickly removing large amount of their Lyme, I simply don't see how far gone patients such as this could recover, cool lasers or not.
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(breaking up text for easier reading for many here)
[ 02-14-2016, 03:40 PM: Message edited by: Robin123 ]
Posted by Jordana (Member # 45305) on :
I was actually thinking something along the lines of an induced coma.
Posted by Jordana (Member # 45305) on :
Although I have to say I've read more than one anectodal story that says something like "We thought my grandma was completely gone, started giving her abx, now she plays bridge and started a business."
So you never know.
Posted by Eight Legs Bad (Member # 13680) on :
Jordana, that's very important.
Of course some people with dementia will get an acute urine or other infection on top, which will worsen their confusion. Eradicating the new infection could then make it seem that there's an improvement in the dementia.
However, it's possible that some of these "anecdotes" are cases where an underlying Borrelia infection has caused the dementia, and tackling it has restored or improved cognition.
The idea that even very old people with advanced Alzheimer's, are beyond help is really premature.
There was a case of a German Alzheimer's patient who had severe confusion and memory loss. His wife suspected Lyme and had him tested.
He tested positive and she arranged for treatment from an LLMD, following which this man began to ROLL BACK some of his memory deficits, and regained the ability to write.
Sadly his conventional doctors refused to persevere with the treatment, and he then deteriorated and died.
After death his brain was found to be positive for DNA of Borrelia.
Dr Alan MacDonald recently discovered biofilms of Borrelia coated in hard, "particulate" amyloid in the blood a patient with dementia.
He has hypothesised that plasmapheresis might be a valuable treatment in some patients.
This involved a patient's blood being run through a machine that will clear it of the clumps of amyloid-coated biofilm, then re-infused into the patient's veins.
Re the idea of "inevitability" of people with Lyme getting Alzheimer's - there's no evidence that that is the case.
At the moment, we don't know the actual proportion of Alzheimer's victims whose dementia was caused by borrelia (sample studies have been too small so far to draw firm conclusions).
It could turn out to be significant - but even if a large proportion of Alzheimer's is caused by Borreliosis, that does not necessarily mean the converse is true.
In other words, it does not mean that all or even most Lyme patients will necessarily end up with dementia.
Syphilis could and often did cause a late-stage dementia if it was not treated. But not everyone with syphilis went on to get dementia.
Elena
quote:Originally posted by Jordana: Although I have to say I've read more than one anectodal story that says something like "We thought my grandma was completely gone, started giving her abx, now she plays bridge and started a business."
So you never know.
Posted by Jordana (Member # 45305) on :
What this really hinges on is the development of new antibiotics.
All docs are trained now to STOP antibiotics because of drug resistance. In December I had a UTI; the standard dose is 10 days of Macrobid -- I got seven, and no consideration at all for a refill when the symptoms weren't gone.
They think they're saving the world, and anyway why waste important abx on the old? They can have as much Mobic and Warfarin as they want.
Posted by Keebler (Member # 12673) on :
- Development of a new antibiotic may or may not be pivotal here and, sadly, it is true they just want to stop them all instead of learn how to think about them differently and use them differently.
Doctors are also trained to despise patients with chronic symptoms, especially where fatigue is involved. Some will do anything they can to kick such patients to the gutter and bury them for good.
This has been my experience with dozens of doctors over decades.
Some of this goes back to the attitude they learn in medical college. Until this attitude changes I'm not sure any of them can open their minds to actually consider chronic stealth infection and the wide range neurological damages, pain and suffering. They'd rather blame the patient.
Yet, I do have hope that the work by Dr. MacDonald, Sapi, ILADS doctors and the educational groups like LymeDisease.org will be able to reach some minds. -
Posted by paulieinct (Member # 17514) on :
quote:Originally posted by foxy loxy: yay!!! but isn't this a little scary? Does this mean all Lyme patients get to look forward to dementia?
In theory it may mean that untreated/undertreated Lyme cases MAY develop dementia. But most of us here are TREATING.
In my case, in the year before I started treating for Lyme and coinfections I had Alzheimers-like symptoms - like waking up in the morning and for a few minutes not knowing where I was, thinking I was in my childhood home. Also...
..being in a store and getting disoriented, sometimes not knowing which store I was in.
I'm now almost 68 and these symptoms are GONE after 7 1/2 years of treatment.
Posted by foxy loxy (Member # 47053) on :
So, I guess the trick would be to get rid of Lyme... yikes! Been workin' on that four five years...I had better hurry up!
Still that is a good happy thought that I will believe paulieinct! Thanks for that plug.