quote:

---

Originally posted by seibertneurolyme:

Lymetoo,

Had read about your father before, but didn't realize you felt your mother also was undiagnosed.

---

It was my main motivating factor while going through the hell of treatment. I knew what would happen to me if I didn't get rid of this stuff.
 

---

Posted by bettyg (Member # 6147) on :
 
Kayak, thank you for sharing your very sad, and true story of your parents with undx lyme disease.

I also feel my late Dad had chronic lyme since the age of 7 or 9. He had a whole lifetime of problems, but overcame majority ofthem ... so stubborn; the Norwegian in him! uffda Dad was 86, 3 months short of his 87 ... what a life he had in/out of hospitals.

I relive certain comments like this with my lost loved ones. Here's a special hug and kiss for you.
 

---

Posted by dontlikeliver (Member # 4749) on :
 
Ipkayak,

Tell me about it. I can sympathize.

My mother's also in a nursing home, paraplegic and incontinent, and mentally somewhere inbetween schizophrenia and dementia. She lies on her 'hospital bed' 24/7 and stares at the ceiling.

When I do get to visit her, about once a year as she's in another country from me, she doesn't really know who I am but when I say my name, she'll say "I had a daughter called that". And, when she has a more lucid moment she'll say "I'm glad you're here, you've got to save me, get me out of this place". But, there is NOTHING I can do. (but leave her there)

I can't believe she is still even alive. I don't think anyone can. I would put money on that she also has Lyme, especially because I know her troubles started when she was 7 and got meningitis, which left her paralyzed for several months in the 1940s. After that, she apparently started to get episodes of hallucinations, but I guess she otherwise appeared more or less normal until 1968......from which point she has descended into living hell.

I cannot even get her tested because she has to give her informed consent to that, but not much chance she is going to do that when she's 'in space'. And, even if she got tested, what do I do with that?

These things are tragic. I'm sticking my head back in the sand now......

DLL
 

---

Posted by char (Member # 8315) on :
 
So many heartbreaking stories. I am so sorry to hear of your parents' pain and the hurt it has caused the whole family.

Lyme treatment is so difficult, but WE have the opportunity to get better. Why us? I don't know but these stories make me realize how GRATEFUL I should be/am that my kids and I can get better.

Thanks for sharing!
 

---

Posted by dharmacleaning (Member # 2114) on :
 
As Tutu says. it's a motivation for me to keep trying to get the right treatment. My dad had Lyme several times and wasn't treated correctly. His erratic, paranoid behavior was dealt with by the nursing home with a powerful anti-psychotic which landed him in a wheelchair. He lasted 3 years before the Rispidal(sp?) gave him a stroke, which he died from. Even though his neurologist said it was Lyme, nobody did anything. My mother has never been tested for Lyme, even though she LIVED for being on the beach. She has polymyalgia, and even though we're 30 years apart in age, we act the same - overwhelmed by everyday living, shaky, tired, lying down the moment we can. The usual overall body problems and pain and exhaustion. That's why I keep trying to get better. love dharma
 

---

Posted by dontlikeliver (Member # 4749) on :
 
dharmacleaning,

Can anti-psychotics (which my mother are also on) cause you to end up in wheelchair?

She is in a wheelchair for the last several years, but I can't get anyone to tell me why.

My grandmother, who's 90, thinks (and she's a bit ditzy so I can't trust her) that she fell in the shower during one of her spells in mental hospital and after that could not walk due to bad back pain (also incontinence)...I don't knwo what the truth is, and nobody will/can tell me who is a doctor without my mothers informed consent which she is too sick to give...and my grandmother is still her 'guardian' of sorts making it very difficult for me to get accurate info.
 

---

Posted by dharmacleaning (Member # 2114) on :
 
All I know is that one day my father was walking, the next day in a wheelchair. I suspect the meds. But without them, he became frantic, and broke several ribs falling as he tried to get out of the hospital bed ( the sides were up). I also noticed he could no longer write. The meds kept him calm, but I wished and wished that I had known then what I know now and urged drastic Lyme action to see if the neuro damage could be fixed.
 

---