Dementia from Lyme?

I cant add anything scientific, just my belief in dimentia as Lyme. My mother is in her late 60s, her husband early 60s. Both always very active. One day I guess 2 yrs ago now, my mom called me and said she thinks she was but by a tick. I asked why she "thinks" so, she said I have a purple rash on my left side. I ran to her house to see it. My goodness it was huge! about a foot in diameter. I told her to get to the docs ASAP! She did so and the doc put her on doxy right away. I told her that wasnt enough. Well my mom is hard headed. She took the abx and a week or so later she called and said she felt fine.

During the next couple months she would call and said she was feeling runned down or had the sniffles in her words which meant she wasnt feeling good. No one told me until much later that her husband was feeling unwell off and on too.
Couple months later I gotna phone call. My mom woke up and couldnt get to the bathroom, so her husband rushed her to the hospital. She had a stroke they said. I talked to the doc and he said it was 2 small, inoperable, veins in the back of her head near the neck. I told them she had Lyme and asked if it was swelling closing off these veins. The doc so no, theyre clogged and the meds will open them up.
She now has short term memory loss from the day everything happened. Her new docs says its dimentia and it wasnt a stroke. It really upsets me that none of her doctors, past or present, looked at the Lyme angle.
2 months to the dat that mom had a "stroke" I got another phone call. Her husband was rushed to the ER for a stroke. He had facial palsy. This too was passed off as a stroke, even though I told them about moms history and that her husband had told me he picks ticks off himself also all the time. They live in the woods.
Her husband is better, but his emotional well being seems different, depressive. He says its because of taking care of my mother. Which Incan understand. Shes oerfect in every way, but cant remember short term. She has no issue remembering a year ago or decades ago. Just 5 minutes or last week, ya know?

Sorry for typing so much, but theres a connection, and most doctors refuse to link the too, at least around here in PA. I believe both my mom and her husband are dealing with Lyme, not strokes, and not one person has listened to me yet. God bless all, thanks for listening.

Thanks Girlie. Ya, I stopped trying awhile back. I need all my strength to keep me where im at and going forward. Its tough, not only wishing I could do more for my mom and her husband, but on top of that I have my sister always trying to lay a guilt trip on me. My mom is afraid to stay alone, so while her husband is working, my sister stays with my mom. And her husbands job is swing shift, meaning a different shift every week. And my sister has stayed with her regardless of shift since day one. Shes giving her life to care for my mom. Working, staying with my mom and trying to keep her own family going is rough to say the least. And she cant understand why I am not helping or staying with mom, lessening her burden. She just doesnt understand how hard Lyme and cos has been on me. And then the last few days as I posted in another thread, dealing with palpitations due to my digestive issues, which are my only problems that remain. I just dont habe the ability to help others right now. Its tough. But again, thanks. God bless.

trader758 said...
Thanks Girlie. Ya, I stopped trying awhile back. I need all my strength to keep me where im at and going forward. Its tough, not only wishing I could do more for my mom and her husband, but on top of that I have my sister always trying to lay a guilt trip on me. My mom is afraid to stay alone, so while her husband is working, my sister stays with my mom. And her husbands job is swing shift, meaning a different shift every week. And my sister has stayed with her regardless of shift since day one. Shes giving her life to care for my mom. Working, staying with my mom and trying to keep her own family going is rough to say the least. And she cant understand why I am not helping or staying with mom, lessening her burden. She just doesnt understand how hard Lyme and cos has been on me. And then the last few days as I posted in another thread, dealing with palpitations due to my digestive issues, which are my only problems that remain. I just dont habe the ability to help others right now. Its tough. But again, thanks. God bless.

That is tough, trader. But, you do need to take care of yourself..and not feel any guilt.
Now, my MIL is having difficulties...and because my husband is working full time...I am sharing the duties with my SIL. BUT, I do set boundaries.....as I won't let myself slip back to where I was 3-4 years ago.

I have to take care of me...and my hubby insists on it and has said he'll deal with his sister if need be.
My MIL is 1 1/2 hour drive away....so not easy task to help her.

julymorning said...
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.

Yep, that's largely true July. Most alzheimer's sufferers don't t appear to have insight in to their own condition. That applies with ftd as well.

I finally found the Kris Kristofferson interview about Lyme :
https://www.huffingtonpost.com/entry/a-slow-slipping-away-kris-kristoffersons-long_us_577c047be4b00a3ae4ce6609

He still has memory impairment and visuo spatial issues but his personality returned with treatment. It would be a godsend if treatment could bring back her personality. That's a huge loss.

oregonhay said...


Which means it may or may not have any effect for your wife, and I could be a one-off scenario. Instead of waiting 5-10 months on a lyme protocol to see if your wife's condition is related to lyme (which I think you should also do, and you might see good results in as little as 6 weeks please speak to a LLMD), you might want to ask your doctor if she can try it for a day. I'm just saying, if there is an immediate and dramatic difference, it could be a soft confirmation that a lyme protocol could help out in the long term.

Please make sure you do a lot of research and ask contrarian questions to yourself and experts to eliminate any type of confirmation bias before you decide to do any of these things. Regarding considering a lyme protocol, I would suggest the risks outweigh the benefits at this point as for normal people (including me, and I'm sick) stomach pains and herx reactions outweighed the loss of quality of life being sick. I think you should bring this up to a LLMD. Doing the protocol can't hurt that much.

oregonhay - I'm not understanding how a response to Armodafinil would confirm that she has lyme?

Wifey's test results back from pcp today. CDC positive with igM bands 39 and 41 reactive. Igg bands 23 and 66 reactive.
From quest!

Again, her only symptoms seem to be dementia related, memory, personality change, socially inappropriate behaviors.
Thinking igenex for coinfections next. Any point in bothering to test for Bb thru igenex?

Best Regards,
BJD

Girlie said...

BJD55 said...
Wifey's test results back from pcp today. CDC positive with igM bands 39 and 41 reactive. Igg bands 23 and 66 reactive.
From quest!

Again, her only symptoms seem to be dementia related, memory, personality change, socially inappropriate behaviors.
Thinking igenex for coinfections next. Any point in bothering to test for Bb thru igenex?

Best Regards,
BJD

Congrats??
No point in retesting Lyme with Igenex. CDC positive from Quest is more than enough.

Next step? LLMD....or are you leaning toward herbals?

Next step? Gosh, I don't know. Probably igenex for coinfections. Neuro appt on 3/7, I think I want to see mri results before considering abx. We're still waiting for some other test results; genetic apoe type, heavy metals, and a b vitamins. I'm still skeptical about a Lyme dx without any other sx besides the dementia. Otoh, that seems like the most plausible cause if it's a reversible dementia.

While she gets confused, is socially inappropriate, obsessive, and lacking empathy, she still reads 5 novels a week with Good comprehension, easily solves soduku puzzles, and she can still destroy me at scrabble and boggle games. But she can't deal with her iPhone and doesn't learn when I teach her. Weird huh? She was never socially inappropriate before, but this has gradually developed over the past 6 years with more rapid and disturbing decline over the past year. she's a retired social worker who was very empathetic and successful in her work. She was mensa, always the smartest kid in the room.

If she's asymptomatic seropositive with non-lyme dementia, treatment could stir a hornets nest and just make her miserable AND demented. That would be cruel. Results came in late last nite and I still haven't told her. She insists there's nothing wrong with her. Timing will be important as will careful delivery. Yikes, I dunno what to do but leaning toward herbs for starters.

Question, should we get the igenex blood drawn before starting herbal therapy?

Thanks. Best Regards,
BJD