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Posted 4/30/2019 11:50 PM (GMT 0)
Interesting Girlie about that person you know diagnosed with ALS after lyme because that is what I think I have.

I've been getting severe stiffness in my neck, back and spine as well as having difficulty eating, swallowing and breathing. Scared for the future because of what ALS means.
Posted 4/30/2019 11:56 PM (GMT 0)
Interesting Girlie about the girl you know diagnosed with ALS after lyme, that is what I'm fearing I have.

Been getting severe stiffness in my neck, back and spine and also having trouble breathing, eating and swallowing. Scared for the future because of what ALS means.
Posted 5/1/2019 12:05 AM (GMT 0)

hateslyme said...
Interesting Girlie about the girl you know diagnosed with ALS after lyme, that is what I'm fearing I have.

Been getting severe stiffness in my neck, back and spine and also having trouble breathing, eating and swallowing. Scared for the future because of what ALS means.

If you really think that it could be ALS - then get yourself to a highly experienced LLMD - one who has treated many serious cases of lyme patients who were diagnosed with ALS or MS.
A LLMD who will treat via IV abx if needed.

The LLMD I see is Dr J in Washington DC. He is an Infectious Disease doc and has been treating lyme for many years.

Email me if u want the info.

Do not let it go for more months - act now.

Dr J said once that he can help patients with lyme induced ALS only if they can still swallow.
Posted 5/1/2019 2:05 AM (GMT 0)
Please don't discourage people from wheelchairs. Sometimes "pushing yourself" makes things worse. I know it does for me. If I ever go to an event that requires a lot of walking I will certainly need one or I will be completely swollen and in pain. It's not always permanent, and my friend needed one briefly and can walk again.
Posted 5/1/2019 2:54 AM (GMT 0)
I agree with jb


If someone is very frail - it’s better to be in a wheelchair than risk falling and injuring herself.

She can do exercises/therapy safely with a PT or even planned exercises at home to help stop the progression

In the Under Our Skin documentary there’s a young gal who couldn’t walk - her parents had to carry her up the stairs.
In the sequel she is totally recovered.

Early on I had to stop driving for awhile because I wasn’t strong enough to keep the brake pedal pressed down long enough at a red light. My leg would start to shake.
That’s when I stopped working.

If it had continued to progress I may have needed a wheelchair.
Posted 5/1/2019 2:27 PM (GMT 0)
I have needed wheelchairs at many points in my illness, usually because of dizziness or POTS. In both cases, a wheelchair was my only option for attending doctor's appointments without injuring myself or losing consciousness. When I had myositis, my ligaments were so inflamed there was concern about them snapping if I used them. Many conditions, such as CFS/ME, are exacerbated by physical activity (see the concept of post-exertional malaise) and therefore physical activity should be carefully managed for many of us.

The stigma from being in a wheelchair and the sense of powerlessness and decline it engenders are bad enough without people implying that utilizing mobility assistance for my own safety was foolish for my overall health outcomes. Of course physical activity is important - for digestion, cardiovascular and musculoskeletal conditioning, mood, lymph circulation, and so much else. I agree with making sure to move each day, even if it's just some light stretching, restorative yoga, or gentle exercise one can do lying down.
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