Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
So my father's long time girlfriend of 15+ years....practically my mother-in-law was diagnosed with Parkinson's disease.
Three years ago she got 3-4 Lyme symptoms & I told her to watch out & it COULD be Lyme. Then a few months ago she had over a dozen & she landed in the hospital.
She has trouble moving her leg sometimes too & they just diagnosed her with Parkinson's. She comes to this neck of the woods on occasions & I am sure she got it here. She was also bitten by a squirrel one time a few years ago.
I feel so bad for her & with all that I say I still have difficulty getting them to accept it. Just today my father finally opened up his ear & said uh oh, maybe I will not walk around your place anymore.
My wife's father also has Parkinson's & has had it for YEARS. He used to put ticks on himself back in his country, because he "liked the way they felt on his skin."
Has anyone with Parkinson's fully recovered with long term ABX? Did you experience this, know someone or heard of someone who recovered?
Posts: 2087 | From NY | Registered: Oct 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Aww man!
I have never before heard anyone say they like the way ticks feel on their skin...
I can't be certain, but I think on the ILADS site I was reading a presentation a doc had on lyme presenting itself as parkinsons.
I will try to dig it up for you tonight or tomorrow. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my ex's new wife is dx with parkinsons. when it first happened i gave them a few articles knowing they were reject them and they did. it was awhile ago and i dont have them but i know there is info out there.
she has gone from parkinsons doc to parkinsons doc sometimes having awful reactions to meds
i also have an elderly aunt who was dx late in life but when she could still think clearly. she also followed what regular docs say gradually became less and less mobile and now sleeps most of the time...in nursing home...
all we can do is give the info...why they dont try to treat when not ttreating has such a bad prognosis i dont know-same with als and ms...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
A volunteer where I work has a husband who was diagnosed with Parkinson's and dementia (no telling if it was Lyme induced), and she was unable to care for him anymore at home. He was using a walker and falling frequently, would sit and stare for hours, and needed 24 hour supervision.
She finally agreed to have him see my friend, who is a neurologist and also runs a hyperbaric clinic with a 6-person chamber. He was prescribed a block of 40, 1 hour treatments at 1.5 ATA (considered "mild" hyperbaric, or "mHBOT"), with further treatments if necessary.
At 20 treatments, there was no discernible change, according to the wife. At 39 treatments, the wife flagged me down as I drove into work, and told me her husband's dementia was "gone". She also said he was walking without a walker, using a cane only, on occasion.
A week later, I asked her how he was doing, and she said she had left him home, because he was busy building something in his workshop (using power tools). She said he had been talking about the future, and making plans to travel. She said he was "back". They plan to do another block of treatments, and/or possibly purchase a home chamber.
I spoke to my neurologist friend who had given him the treatments, and she said that he was one of 3 Parkinson's patients who had started treatment at the same time, and all 3 were doing well.
A great resource regarding mHBOT and neurological (& other) conditions is "The Oxygen Revolution" by Dr. Paul Harch, and also his website: hbot.com. Both include before and after SPECT scans which are remarkable...
Posts: 1880 | From Earth | Registered: Jul 2013
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My father had Parkinson's and died before I found out I had Lyme. I think he must have had it too. I believe my mother also had Lyme. She was once in the hospital with RMSF in the 60's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
So sorry to hear that, Lymetoo.
It is very frustrating to me that a treatment that is effective for so many devastating conditions is so underrepresented and underutilized.
It is encouraging, however, that mHBOT is gaining "press" for treating head injuries, wounds, and PTSD in veterans. My neuro friend treats them for free.
I also think the fact that it takes many less mHBOT sessions to treat Parkinson's (and many other neurological conditions) than it does Lyme is a testament to the tenacity and complexity of Lyme disease...
Posts: 1880 | From Earth | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I want a friend with an HBOT chamber!!!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I thought wow I need to try this for lyme.
Then I looked at a picture of a lady in a OX. chamber.
EEEEEKKKKKKKKK!!!!!!
I am extreemly clostrophobic that pic scared the bejebbers out of me.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by lpkayak: I want a friend with an HBOT chamber!!!
lpkayak...
It would be nice...but I met my friend, the neurologist with the HBOT chamber AFTER I became well from Lyme and coinfections using my own home mHBOT chamber...
Now I work with people to find creative ways to access mHBOT more affordably...as it can be very expensive to do long term mHBOT treatments (necessary for Lyme) in a clinical setting...
Posts: 1880 | From Earth | Registered: Jul 2013
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