Worsening cognitive impairment (and Rickettsial dx)

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Hello all,

I have been diagnosed with ME 4 years ago. Since then, I have quit my job and became a stay at home mom. Recently, I'd say in the passed three weeks, my memory loss has become worrisome. I forget things I just did, things I have said, I cannot find my words, and I also replace words with other words (ex: I'll say tv instead of table).

Every day, I wake up at 7:30 to make my daughter's lunch and put her on the bus. I relax until 10, then I try to make a few worksheets (I have a little online store for teachers) and work on that for about one hour. I eat at noon and then maybe do some light cleaning until my daughter and husband come back home, where I cook supper. Three evenings out of the week, I have to drive my daughter to the pool or figure skating (this is awesome for me, I used to be housebound). Then back home and tv for rest of night.

Am I doing too much still? Is that what is causing my rapid decline in cognition? I actually used to be able to do way more this summer without crashing (bike rides, helping my husband around the yard, running errands, raveling!) but now I feel like I'm heading towarss being houseboung again energy wise.I also have massive anxiety going on because I think I either have a brain tumour or early onset dementia (I'm sorry if that sounds funny, but I'm really terrified due to the memory loss). I wake up to nocturnal panic attacks. Whenever I forget something I was about to do or the words I should be using, it causes me to spiral in a panic attack too.

Also, in 2017, my doctor found I had a rickettsial infection (a Lyme coinfection but Lyme was never confirmed). I was never treated for this coinfection as my doctor said my body appeared to be doing it by itself. Can this be the reason of the cognitice decline? If so, why is it happening now and not 4 years ago? Should I get treated for the coinfection that my body seemed to take care of without meds?

Thank you to anyone who will respond. ❤
 

Judee

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I was bitten by something at 10 and then never treated. I got mono at 12 and then was sick multiple times through the years.

My recent Lyme test came back negative but I had p41 and people in the Lyme FB groups say based on symptoms and that test, a LLMD (Lyme Literate MD), would likely treat.

I can't afford that but I have been able to use some antibiotics since I remembered that bite and my memory, though still bad, has improved. I mean I can sometimes remember names now from people I met years ago even though I only knew them for a short while.

I still have brain fog and sensory overload many times but the memory itself has improved in some ways. :)

If you can I would seek out a LLMD.

I read this story yesterday about a similar situation. You might find it helpful. https://www.yourtango.com/health-we...aRT0nZpsLIGGp7N5O7jYVpMwxCVnWOLd1opOiYfQMhAOc
 
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hapl808

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Am I doing too much still? Is that what is causing my rapid decline in cognition? I actually used to be able to do way more this summer without crashing (bike rides, helping my husband around the yard, running errands, raveling!) but now I feel like I'm heading towarss being houseboung again energy wise.
So hard to know and so individual. Things crash me now that five years ago I would've thought were absolutely impossible to cause that. It changes day to day and year to year.
 

Woof!

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When I started having cognition, memory and speaking issues on occasion ("brain fog plus"), I asked my primary doctor for a consult with a memory specialist (a psychologist who also does neurophysiology testing). After spending several hours with him going through some testing, I learned my issues were stress and PEM-related, but not indicative of severe brain disease. It left me much less worried about the situation. Perhaps this would help you?
 

lenora

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Everyone above has very good points....but that's the problem with us, everyone has something different that may have contributed to their situation.

Have you seen a neurologist (top of the medical hierachy), preferably one who has deal with CFS/ME/FM? Or even a rheumatologist who specializes in those fields? A neurologist will rule out many illnesses and you can freely discuss your anxiety with him/her.

I have rather severe anxiety and my neurologist now has me on the top tier of meds to deal with it.

A lot of us suffer from anxiety, so you definitely aren't alone in that department. My memory was good well into my 70's, and then I contract autoimmune encephalitis and had a number of other problems. It has never been as good as it was, but is no worse than other people my age....it was just the one thing I really had going for me. I wouldn't overly worry (we do learn how to let go of these things as we age) but would definitely see a neurologist who may refer you to a psychiatrist for one visit, just for confirmation. Be truthful about your symptoms; it's important in order for you to get help.

I've had continuing help from my counselor over the years and have never had to return to the psychiatrist. Yes, it's possible that you may be doing too much and perhaps you may be having adrenaline surges on the nights you're taking your daughter out. Talking with other parents, that type of thing. I never talk on the phone after 3-4:00 p.m. It just makes proper sleep impossible. Best of luck. Yours, Lenora.
 
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