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Posted 2/9/2018 12:59 AM (GMT 0)
Just as I'm emerging from 18 months of Lymeco sick, my wife's descent down the dementia rabbit hole is accelerating. I've seen minor symptoms of dementia for the past 8 years or so but was in denial. Now it's pervasive and family and friends are most alarmed. It's obvious even to strangers. & #@!?%¿§!

It looks like she has behavioral variant frontotemporal dementia. I joined an in person dementia support group and an online forum specific for ftd caregivers and read similar stories though Noone speaks of Lyme.

I've been reluctant to get her diagnosed as her drivers license will be automatically revoked. Both of her parents died with dementia. I have a sliver of hope it's Lymeco, but that seems like long odds.

We've got PCP and neuro appts next month. Our new pcp is at least Lyme friendly and is ordering a slew of blood tests next week including a western blot with all bands reported, thyroid, etc etc. She's willing to order igenex if this wb is negative or indeterminate.

I don't want to throw away money on integrative doctors if the mri shows significant atrophy. I'm probably looking at having to pay for caregivers before long which threatens to deplete our nest egg and impoverish me.

Ive heard Kris Kristofferson had Lyme dressed as dementia and recovered. I wanted to read his interview but didn't want to pay for it. Anybody read that interview?

She doesn't have any typical Lyme symptoms. She thinks she's the healthiest person on the planet. She doesn't think there's anything wrong with her and doesn't want to hear it.

Here's some of her symptoms that match up with ftd :
Major symptoms of FTD are:

**Dramatic change in personal and social conduct. lacks initiative, seems unconcerned, and neglects domestic, financial, and occupational responsibilities.
**Loss of empathy toward others.
**Patients may show shallow affect (flat facial expression or lack of emotional response). Or they may be inappropriately jocular and sing, dance, clap, or recite phrases repeatedly.
**Rigid and inflexible thinking and impaired judgment.
**Loss of insight into personal and social misconduct.
**She's increasingly confused and forgetful.


Anybody ever heard of dementia from Lyme without all the discomfort?
Posted 2/9/2018 5:27 AM (GMT 0)
Most of ally hilfigers early symptoms were psych .well me 3 ..also robin williams lewy body dementia is tied to parasitosis and spirocheatal neuro infection ....alan macdonald founded spirodementia.org com to spread the word about alzheimers and ketes ...i think myco and bartonella can play a role with borrelia in the brain and do untold horrors from mild hpa axis to severe impairment and inflammation dr frid calls auto immune encephalitis. ...its just a protection failsafe the body uses glial cells and amyloid plaques to seal off the areas of the brain but also goes the memories or wit wor what eves is starved from circulatuon starts as little ms white matter then bam ....i wonder if its a roll of the dice where we go like mork, hawking or micheal j fox it ...to meet the maker ...my 88 yo grandmother says theres a point where all thats worth anything is just the precious memories of times had with people we care for.....some sick irony to steal those .../spirodementia.wordpress.com/
Its worth testing her ?...treatments on her .i suggest u approach delecatlely ..im in rock and hard place with my friends bart rages ...she doesnt want to admit or treat . Theres a root to every tree ...good luck

Post Edited (bluelyme) : 2/8/2018 10:33:15 PM (GMT-7)

Posted 2/9/2018 6:08 AM (GMT 0)
So all her symptoms are Neuro?
Posted 2/9/2018 3:08 PM (GMT 0)

Girlie said...
So all her symptoms are Neuro?


Thanks Bluelyme, good blog you linked. A glimmer of hope. This is really rough. By and large it's like another person lives in her body now.

Girlie, I'm not sure if you're asking me or Blue. But yes, my wife's symptoms are brain only, at least as far as I can tell, though her personal insight is gone. She is an enviable sleeper, has good stamina, no unusual pains or peripheral nervous system issues, no gut problems. I'm envious of her in some ways; when I get a cold it lasts 3 weeks. She gets a cold it's gone in 3 days max. She does have very high cholesterol however.
Posted 2/9/2018 3:27 PM (GMT 0)
Lyme or not, doesn't matter all that much. Plenty of studies have connected a variety of infections to Alzheimers. Including syphilis, oral spirochetes, borrelia, chlamydia, candida, herpes virus etc. Miklossy is editor on a book on the topic https://books.google.com/books?id=-EPiDgAAQBAJ&source=gbs_book_other_versions

You can get an idea from the table of contents the extent of the issue. Thing is alzheimers and the pathological hallmarks are probably nonspecific and don't point towards a single cause. They're just generalized inflammatory reactions to diverse microorganisms. Probably even polymicrobial in most cases. Personally I would approach it the same way I approach Lyme and aggressively try and understand the issue. One of the reasons I take to herbs is because there is a long history of use that can inform us on what their potential medicinal qualities may be. Ie things like gou teng and chinese skullcap being used for neuro issues. Preclinical studies have also shown diverse effects on alzheimers models as well as directly on microorganisms. Herbs tend to be a bit shotgun in that they deal with viruses, fungi, bacteria and so on. So I tend to have a lot of hope in regards to ability to heal from these sorts of issues. But that's just me. I personally wouldn't throw in the towel til the day I die knowing how much potential is out there right this very minute. Almost all these chronic degenerative illnesses are suspected of being infectious diseases. Lyme is just a case where causality has been tied to clinical endpoints. So Lyme or not, the same basic principles likely apply whether you're dealing with alzheimers, cancer, cardiometabolic disease, or autoimmune disease. These are all potential outcomes of Lyme disease not because Lyme is some "great imitator" but because these are all more than likely microbiologic illnesses. Therefor successful Lyme treatment should be instructive on how to approach non-Lyme illnesses. And it very well may be Lyme in the end. Symptoms can vary pretty widely due to species differences as well as host susceptibilities
Posted 2/9/2018 6:32 PM (GMT 0)
Lab tests are not definitive for Lyme. It's based on symptoms and everyone presents differently. So even if they are negative, that doesn't mean she can't have Lyme or some other infectious organism. My mother's symptoms were diagnosed as generic "dementia" by mainstream doctors. Also, lack of B12 will cause many brain/neuro issues and doctors are oblivious to it as long as your labs fall into their "acceptable" range.
Posted 2/9/2018 7:52 PM (GMT 0)
I'm one that suffered late stage dementia symptoms from these infections and came back from it. Although I did have a lot of physical symptoms along with it, it's not unheard of for a person to not have physical symptoms along with psychiatric symptoms.
According to this chart, I was in stage 6 of dementia: /www.dementiacarecentral.com/aboutdementia/facts/stages/

These articles may be of help to you:
danielcameronmd.com/lyme-disease-neuropsychiatric/

www.mentalhealthandillness.com/tnaold.html

These list articles that have been published - thought it may be helpful in your searches:
/on-lyme.org/en/sufferers/lyme-stories/item/264-list-of-references-for-psychiatric-symptoms-of-lyme-disease

www.lymeinfo.net/neuropsych.html

There are even less articles on Bartonella causing psychiatric issues, but it does:
/www.ncbi.nlm.nih.gov/pmc/articles/PMC2100128/

forums.prohealth.com/forums/index.php?threads/bartonella-co-infection-psychiatric-symptoms-more.258826/
Posted 2/9/2018 9:48 PM (GMT 0)
My daughter had all those symptoms at 23. She really couldn't function mentally, couldn't think. She was diagnsed with Lyme, babesia and bartonella. We'll never know which of the three caused which physical symptoms or which mental symptoms, or how their combination affected her.

After a year plus of treatment, her cognitive function was the last to recover. Almost there.

It is certainly possible your wife is harboring one or more of these organisms. I think it would be prudent to test with Iginex.

From Dr. Daniel Cameron (he practices in NY State):

Case review: 80-year-old with Lyme encephalopathy instead of dementia

“An 80-year-old patient was admitted to the hospital after a fall, and subsequently developed an acute confused state requiring transfer to a neuropsychiatric unit,” writes Karrasch and colleagues in the journal Ticks and Tick-borne Diseases.

danielcameronmd.com/case-review-80-year-old-lyme-encephalopathy-instead-dementia/

Dr. Robert Bransfield has written extensively on the psychological and neurological manifestations of lyme and co. Here is a good interview with him about this:

Dr. Robert Bransfield: Lyme Disease and the Brain

lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-robert-bransfield-lyme-disease-and-the-brain-

and

The Neuropsychiatric Assessment of Lyme Disease - long but very informative
www.mentalhealthandillness.com/tnaold.html

Best.

Post Edited By Moderator (Traveler) : 2/9/2018 3:12:11 PM (GMT-7)

Posted 2/9/2018 9:52 PM (GMT 0)
Sorry about the tiny font. I tried to edit but nothing happened.
Posted 2/9/2018 10:13 PM (GMT 0)
B99, I got it fixed - that tiny print made it hard to see! It was because of some reference numbers in the article were copied and pasted into your post that the font size changed. I've learned to watch out for those!!

While in your post, I went ahead and made the links "clickable" - hope you don't mind!
Posted 2/10/2018 2:58 AM (GMT 0)
Thank you Traveler. Much appreciated! It hasn't happened before but I'll try pasting differently if it happens in the future.

By the way, I've been meaning to say ... thank you for all your work on this site. I really enjoy reading your informative posts.

And the same to all the other moderators. So many of us would have been lost without people like you here to help.
Posted 2/10/2018 7:09 PM (GMT 0)
You are more than welcome, B99! It took me forever to figure out what was happening when I'd post portions of articles and the print would 'suddenly' get super small, or super large! LOL! Now, I just happen to know what to look for is all, once I go into the original post. Sometimes I can't help, but I do like to when I can!

Aww, you are so very welcome!! I'm so very happy to hear that I have been of help to you!!

Yes, we have had some really outstanding Mods and "Mod helpers" here over the years!!! I sure wouldn't have been able to continue to keep this site running so well without them!!
Posted 2/10/2018 7:18 PM (GMT 0)
https://www.youtube.com/watch?v=6D5aA_-3Ip8&t=9s


This study is very interesting-
Posted 2/10/2018 7:58 PM (GMT 0)
This is absolutely not what you want to hear, but I've been told and have read that the difference between Lyme dementia and 'real' Alzheimer disease is that sufferers with Alzheimer have no realization that their memory is deteriorating, or that any other brain function is deteriorating. We, at least everyone I've talked to or read about with Lymeco infections, was aware brain functions were going awry.

This isn't to say there might not be ways of slowing her progression down, definitely look into all avenues into this. I am so sorry. Either way it is a nightmare to live through.

P.S., behavior variant is not as easy as memory function and cognitive ability for the Lyme sufferer to recognize.
This part of your post just struck me that often we have changes in our character with this disease that we don't feel like others are able to see in us. There is hope!

Post Edited (julymorning) : 2/10/2018 1:02:28 PM (GMT-7)

Posted 2/10/2018 8:12 PM (GMT 0)
Now that my MIL's dementia has progressed, I'm finding people using the term Alzheimer's disease...but she has never been diagnosed with it. My MIL has had a few strokes...and the damage showed up on brain imaging. So, in her case - it's not alzheimer's...her dementia is from damage after the stroke events.



"Here's the major difference between Alzheimer’s Disease and dementia — when an individual is diagnosed with dementia, they are diagnosed based on their symptoms without actually knowing what's behind the symptoms. In Alzheimer’s disease, the exact cause of the symptoms is understood. In addition, Alzheimer's disease is not reversible, whereas some types of dementia, such as those caused by nutritional problems or a drug interaction, can be reversed."

www.medicaldaily.com/alzheimers-vs-dementia-how-they-differ-and-what-do-393669

BJD - has your wife had imaging of her brain done?

Sorry - if you've already mentioned..
Posted 2/10/2018 8:22 PM (GMT 0)

Girlie said...
Now that my MIL's dementia has progressed, I'm finding people using the term Alzheimer's disease...but she has never been diagnosed with it. My MIL has had a few strokes...and the damage showed up on brain imaging. So, in her case - it's not alzheimer's...her dementia is from damage after the stroke events.



"Here's the major difference between Alzheimer’s Disease and dementia — when an individual is diagnosed with dementia, they are diagnosed based on their symptoms without actually knowing what's behind the symptoms. In Alzheimer’s disease, the exact cause of the symptoms is understood. In addition, Alzheimer's disease is not reversible, whereas some types of dementia, such as those caused by nutritional problems or a drug interaction, can be reversed."

www.medicaldaily.com/alzheimers-vs-dementia-how-they-differ-and-what-do-393669

BJD - has your wife had imaging of her brain done?

Sorry - if you've already mentioned..

I had some testing done, but it was a SPECT scan that showed my issues, I believe. I had two areas of my brain with lowered blood flow - one was around 20% low, and the other one was less than that. I believe that was most of the cause, along with toxin overload in the brain, of my dementia symptoms.
Posted 2/10/2018 8:35 PM (GMT 0)
I find this UCLA study very interesting-a cure. I think they had 36 different easy things that they did. You can read it but simple things like balancing vit d and b-12 and going to be early. I know an antiaging docs that uses this has his blueprint to his patients achieve health.

I kind of think this approach can be used to cure lyme.
Posted 2/10/2018 9:21 PM (GMT 0)

Traveler said...

Girlie said...
Now that my MIL's dementia has progressed, I'm finding people using the term Alzheimer's disease...but she has never been diagnosed with it. My MIL has had a few strokes...and the damage showed up on brain imaging. So, in her case - it's not alzheimer's...her dementia is from damage after the stroke events.



"Here's the major difference between Alzheimer’s Disease and dementia — when an individual is diagnosed with dementia, they are diagnosed based on their symptoms without actually knowing what's behind the symptoms. In Alzheimer’s disease, the exact cause of the symptoms is understood. In addition, Alzheimer's disease is not reversible, whereas some types of dementia, such as those caused by nutritional problems or a drug interaction, can be reversed."

www.medicaldaily.com/alzheimers-vs-dementia-how-they-differ-and-what-do-393669

BJD - has your wife had imaging of her brain done?

Sorry - if you've already mentioned..

I had some testing done, but it was a SPECT scan that showed my issues, I believe. I had two areas of my brain with lowered blood flow - one was around 20% low, and the other one was less than that. I believe that was most of the cause, along with toxin overload in the brain, of my dementia symptoms.

The SPECT scan is what Dr. J. will do - sometimes it's helpful when deciding about IV abx for the patient.
Posted 2/10/2018 9:25 PM (GMT 0)
Thanks for the info and encouragement Traveler and b99. There seems plenty of evidence out there that lyme could be the culprit.

Blood test on Monday, results by Friday I'd guess. I've got the igenex test kit on hand should we need to go that route. If the neurologists she sees are worth their salt, they'll be ordering cerebrospinal fluid testing, mri, pet, spect scans. Think I should get a csf kit from igenex?

Which ever route we take will be tough. She denies having any behavioral or personality change that is so obvious to everyone else.

"Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness."
Posted 2/10/2018 9:38 PM (GMT 0)

BJD55 said...
Thanks for the info and encouragement Traveler and b99. There seems plenty of evidence out there that lyme could be the culprit.

Blood test on Monday, results by Friday I'd guess. I've got the igenex test kit on hand should we need to go that route. If the neurologists she sees are worth their salt, they'll be ordering cerebrospinal fluid testing, mri, pet, spect scans. Think I should get a csf kit from igenex?

Which ever route we take will be tough. She denies having any behavioral or personality change that is so obvious to everyone else.

"Anosognosia, also called "lack of insight," is a symptom of severe mental illness experienced by some that impairs a person's ability to understand and perceive his or her illness."

Are you sure you want her to go through the spinal tap?

I didn't know Igenex had a csf kit for testing. If she does get it done...may as well use that kit to see if they find lyme.
Posted 2/10/2018 10:51 PM (GMT 0)
Dr. Dale Bredesen is on the cutting edge of dementia treatment and research. My functional MD has been traveling back and forth to California to learn and work with him.

/www.drbredesen.com/thebredesenprotocol

I think what bluelyme intimated is probably it in a nutshell. Every tree does indeed have a root. How things manifest outwardly can be very different for different people depending on age, genetics, immune state, etc. My functional MD told me that many older patients, especially women, who have CIRS from biotoxin exposure such as mold often present with cognitive decline that looks like dementia.

I don't know how old your wife is, but I would seriously look into Bredesen's work and have her evaluated by a doctor working with his protocol if you want any shot of rescuing her. I do understand the financial dilemma. It's utterly unethical that the sickest and most vulnerable people are forced to pay out of pocket for real healthcare to have any chance of recovery while the mainstream world ignores us or throws drugs at every symptom while denying any root cause for our sickness.
Posted 2/11/2018 6:05 AM (GMT 0)
Thanks for the discussion and helping me to foster some hope.

Girlie, as for putting her through the spinal tap, I don't know. Id want to know how she might benefit before putting her through that. I'd want to see the results from mri, pet, spect b4 considering g spinal tap. Her symptoms match closely to frontotemporal dementia, the behavioral variant form. That may or may not show up on the scans. CSF tests would reveal if there's an over concentration of tau proteins which cause the damage in ftd. It's a different process than alzheimer's. It's believed that ftd will be the first dementia for which a cure is discovered.

Walking by faith, our new pcp is an incredibly good doc. We're fortunate to have found her. Wish I knew her when I first got Lyme sick. Anyway, She suggested the Bredesen protocol though I'd already familiarized myself with it. She's testing for all those things bredesen suggests and then some. My dw already has many of those habits bredesen suggests. I've tried to steer her toward a ketogenic diet, but that's not in the cards. She's a gluten junkie, I have to push her to eat fresh veggies, it's a battle. I'd have to have her on 24hr lock down and fight like hell with her to go keto. Keto seems to be the foundation of the program. She's a good pill taker though. Sleeps enviably, doesn't worry, (That's my role) exercises....... She's 69 y/o.

It could be infectious, could be normal pressure hydrocephalus, vitamin deficiency, hormonal, heavy metal, multi - infarct dementia, or tumor. While Bredesen and Dr. Mark Hyman make a slick sales pitch, you'd think there would be independent testimonials by people cured of their dementia like there are with Lyme, but all I can find are their miraculous claims. Hyman claims he cured 2, Bredesen claims 9. That's it?
Lyme or other infection doesn't seem like too far of a stretch though since I got it..... Don't get me wrong, we'll go Bredesen protocol as much as feasible, nothing to lose.

Post Edited (BJD55) : 2/10/2018 11:12:00 PM (GMT-7)

Posted 2/11/2018 1:52 PM (GMT 0)
That's interesting what you said - that she's a gluten junkie. Hopefully the tests the doctor is running will reveal some clues. I wonder if certain pathogens or genetic activations institute gluten cravings. I know Buhner has said mycoplasma loves gluten. If my thinking is correct that certain pathogens or even genetic mutations can influence food preferences, then surely those preferences could be altered if root causes are addressed. Just me thinking out loud.
Posted 2/11/2018 3:26 PM (GMT 0)

WalkingbyFaith said...
That's interesting what you said - that she's a gluten junkie. Hopefully the tests the doctor is running will reveal some clues. I wonder if certain pathogens or genetic activations institute gluten cravings. I know Buhner has said mycoplasma loves gluten. If my thinking is correct that certain pathogens or even genetic mutations can influence food preferences, then surely those preferences could be altered if root causes are addressed. Just me thinking out loud.


Could be genetic, my step- daughter and her family are starch-etarians. Their diet worries me as they're in their 40's,
overweight and diabetic. Of all people, they need a keto like or at least Mediterranean diet. They're proud to be vegetarians. I can't say anything to them about it. So yeah, could be genetic food cravings.

That being said, my dw used to be very health and diet conscious but for the past 8 years or so she has gravitated toward convenience food when left to her own devices.

Me, since Lyme, I've cleaned up my diet. I only crave sugar if I eat it, so I don't. I stick to whole foods 90% and I'm 100% gluten free. I'm generally keto for 2 of 3 meals per day, and close on the 3rd meal. I got tested for gluten intolerance and one of about 15 peptides came up in the yellow zone. Gluten can effect the brainstem function on people sensitive to that particular peptide. I got shingles in 2016 that affected my face, clearly a brainstem infection and it brought me to my knees. My dear old pappy, God rest his soul, was done in by complications from a cerebellar stroke. While I've never been gluten intolerant, I figure I'd best stay away from it. My bmi is much better since cleaning up my diet. I've influenced my dw's diet some for sure, but she does her own thing for breakfast and lunch.

As a side note, I'm a speech therapist and I work with demented patients in skilled nursing facilities. Swallowing disorders comprise the bulk of my caseload. As dementia progresses, taste receptors in the brain die off and the "sweet" taste receptors are the last to go. Hence the carb cravings. Eventually, every food may become a noxious stimulus resulting in failure to thrive. Or, they may aspirate their food resulting in pneumonia. But I digress.

Post Edited (BJD55) : 2/11/2018 8:32:21 AM (GMT-7)

Posted 2/11/2018 6:23 PM (GMT 0)
When I was deep into the worst time I've ever had with these infections - and when my brain was the most involved, I always defaulted to whatever food I could just grab and take back to my bed. I knew I needed to eat at least once a day, but I had no brain power to determine what was going to be good for me and what would create more issues.

That's really interesting about how the 'sweet' taste is the last one to go - now I know why I had issues for so long with avoiding them. Obviously, I'm much better now and understand that just because I can taste it well doesn't mean it's something I should be eating!

I wish you the best of luck with all the testing for your wife, and of course, any treatments pursued!
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