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Posted 5/5/2017 6:08 PM (GMT 0)
I'v posted before about my mom's Lyme, ALS symtoms and her starting treatment. From the end of August to now she is unable to walk, use her arms and hands, and cannot breathe on her own. Has anyone seen Lyme move this fast?

We are taking her to a new LLMD next week. The first time I called and told the woman that does the new patient intake about my mom's condition, when it started, etc. she seemed very surprised it happened so fast. Which made me worry. So I had to call back today to ask what we should do about signing paperwork for my mom as she cannot sign anything herself. The woman said "she can't sign at all? and all of this happened since august?!?!?!".

Yes, it's fast. But why does this woman keep asking me this same thing?! She's making me paranoid.

-Kari
Posted 5/5/2017 6:17 PM (GMT 0)
While it is unusual, I've heard of it happening before, and since you don't know when she actually acquired the infections, they could have been causing issues before August, but at a minor level that was only frustrating for your Mom, not preventing her from walking or from signing her name and such.

When my legs were affected so that I couldn't walk, it happened quickly. That was why it was so scary, one day my legs froze and I couldn't move them to walk. I could move them (slowly and with help) to get in and out of bed, a chair and so on, but walking just wasn't something I could do.

And, others with ALS type of presentation can have it happen more quickly too, from what I gather from reading their stories, although I'm not sure just what the differences may be between the different presentations, other than possibly different strains and different genetic mutations/predispositions that we may have, causing us to respond differently.
Posted 5/5/2017 6:36 PM (GMT 0)
When I had to stop driving for a few weeks because of leg weakness...it happened pretty fast. I was getting weak for a couple of weeks...and then I was driving one day...and my leg started shaking when I had my foot on the brake...and it scared me.
Posted 5/5/2017 6:55 PM (GMT 0)
That sounds like what happened with my mom...

Left arm weakness started in late August...by the end of October, she was starting to feel her legs feeling heavier, but was still able to do things. By the end of November, she stopped working because of her legs, her left arm had gotten significantly weaker, and she was walking with a walker.

By Christmas, she was hitting another downhill spiral...and by the end of December she was no longer able to walk..just stand to pivot transfer onto the toilet, etc. By the end of January, her breathing was becoming affected and her right shoulder was starting to do the exact same thing as her left arm did.

February we took her to the hospital for her breathing...and by the end of February she was in the nursing home. She went through a 6 week plateua of no changes..and then she started the antibiotics and through the course of the last 2 months, she now has basically no use of her right arm and her breathing has gotten a little worse.

-Kari
Posted 5/5/2017 6:59 PM (GMT 0)
and...that is an awfully quick progression - for an ALS patient. I believe you are on the right track pursuing lyme disease.

My symptoms hit me hard and fast - not nearly as severe as your mom's though...but I was in my Dr.'s office every single week with new symptoms to report...and more testing...specialists appt.s

Is this new LLMD - not from the clinic you were looking into? someone else?
Posted 5/5/2017 7:37 PM (GMT 0)
Girlie - same clinic. Just worries me that she thinks it's crazy how fast it has gone. Are they going to be able to handle her case? When I say my mom is in bad shape..I mean she doesn't have much more to lose before she loses it all. Just scary.
Posted 5/5/2017 9:05 PM (GMT 0)
In 6 months i went from working full time human to visable musclewasting ,livedo, horrific visual disturbances and excruciating joint pain..yes lyme can move this fast .look through her records i bet they gave her a med or a shot (even flu vaccine in august ) that sparked this downturn ..

please kari if you need further confirmation do the dna connexions test and get her on rocephin asap.!asap!
i gave the creek trail starting protocol for als lyme on lymenet .call over there. In colosprings .its rocephin ,zith rifampin and tinadozole til plateaue then confirm babesia
Posted 5/7/2017 12:24 AM (GMT 0)
It hit me today the reason that maybe this happened so quickly for my mom....she was a smoker. Since she was like 17. So that would mean her immune system was probably already weak which made it easy for Lyme Disease to move so quickly. Right?

-Kari
Posted 5/7/2017 12:38 AM (GMT 0)

KariW93 said...
It hit me today the reason that maybe this happened so quickly for my mom....she was a smoker. Since she was like 17. So that would mean her immune system was probably already weak which made it easy for Lyme Disease to move so quickly. Right?

-Kari


Anything is possible Kari. None of this can be wrapped up in a cut and try conclusion for everyone.

My Mom was a smoker for over 60 years. She lived on the same 40 acres of forest for 7 years before I moved with my baby girl to the same property. I was plagued with ticks there, and started getting sick in 1984. I also quit a 10 year smoking habit the same year. My Mom was constantly in the woods and yard. She lived there for about 28 years and continued smoking until her death in 2007, as far as I know, never having acquired Lyme.

I have wondered about that the past couple of years since figuring out I have it. Or if she had any of the co-infections. Her coroner report said she died of heart failure due to atherosclerosis. That could have been caused by a tick infection, smoking, any number of reasons.

My summery is and has been, why the difference between the two of us, in our habits, or are there similarities I'm not fully aware of. She had severe COPD, as do I.

I forgot to mention my daughter also has Lyme and possibly co infections, and figuring that out made a number of issues she had growing up and as a young adult start to make sense. Oh, and she began smoking at 18 or 19 and has smoked off and on for 17 years.
Posted 5/7/2017 1:25 AM (GMT 0)
July - I'm definitely not saying that's why she was infected or anything. Just that her smoking causes a Lower immune system, so maybe once she was bitten by the tick, her body wasn't able to fight it off as well as if she were a non smoker.

I thought of it after a different post where someone said that when treating Lyme, it is important to not drink or smoke as it lowers the immune system.

-Kari
Posted 5/7/2017 1:54 AM (GMT 0)
Oh I know that's what you were referring to, but, I'm just saying at one point we were both smoking, she far longer and should have had a weaker immune system than I.

But then, I kept qualifying my story by stating I'm not sure she actually didn't have Lyme, and no one realized it. There was at least one health issue she was having towards the end that I wasn't informed of. She was always pretty healthy, actually. But then so was I until '84.

I'm probably confusing you trying to draw from my own experiences.

Having a weakened immune system would tend to allow symptoms to explode fast. I think that's why someone asked you if she had had any surgery just prior. Or even had teeth work done. (Other than superficial cleaning).
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