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Question from a mom of Lyme patient. . .

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Posted 4/15/2013 12:34 PM (GMT -5)
Hello All!

Most of you have probably seen me around here before, but it has been awhile!  My now 18 yo daughter has been struggling with Lyme for most of her life; diagnosed 2 years ago, and has been getting better over the last year with natural/alternative treatments.  I do not have Lyme symptoms, though I have tested positive--so I really do not know the answer to my question from the PATIENT perspective!

Here is my question. . .

How much can I expect a person with Lyme to be able to do HERSELF????

I feel like I have jumped in and done so much for my daughter that I have crippled her from helping herself.  She is taking lots of supplements and has a schedule of sorts of when to take them.  As she has gotten better (up off the couch), I have gone from taking everything to her--even her meals; to now expecting her to take some part in helping herself.  She is now working 2 part time jobs--just so you have a perspective of how far she has come. 

She still expects me to put out all of her meds and organize them for her.  I am trying to get her to assume some responsibility.  I have made a very detailed, but simplified schedule, and we have a calendar for her to track how much of certain things she takes each day.  She has told me that people with Lyme cannot keep things straight and she needs me to still put everything out FOR her.

I do know that Lyme affects the brain.  And I do know that she is on quite a few supplements.  I have tried to make it very simplified for her.  Is this something that is too challenging for Lyme brains????  At one point should one assume responsibility for her own life??!! 

Thank you for any thoughts you might be able to share from a Lyme perspective!!

~~Joni

Posted 4/15/2013 7:26 PM (GMT -5)
I think you need to discuss this with her. And she may or may not even know how much of this she can do herself.

Show her what you do when you put out her pills, then be there to help as she does it herself. That way, you both will find out what she can & can't do with regard to this issue.

And don't be surprised if you need to be present as a helper sometimes in the future, as yes, Lyme does cause the brain to be quite foggy at times. And her level of functioning is likely to fluctuate or vary from day to day and hour to hour.

I guess what I'm saying is, try to get her to participate, but she may need your help to complete the task.

There are many tasks I can start but can't finish without help or a lot of time to get it done...way more time that it should take.

Paying bills, doing income tax, etc. are big struggles. And I don't have nearly the brain fog that many with Lyme have.
Posted 4/15/2013 9:34 PM (GMT -5)
Please email me if you'd like to talk some, perhaps on the phone. My 14 yo daughter has lyme and babesia and I struggle with some of the same challenges you are naming and would love to talk about it. I'm finding phone is often easier and less time consuming particularly since I can be getting other things done while talking. I'm interested in knowing more about the herbals you're using. We're thinking of going that route.

My email is rebeccainreedcity@gmail.com
Posted 4/16/2013 6:41 PM (GMT -5)
Thank you Razzle! I have already offered her all of your suggestions, but actually just want her to come to me if she needs help! It is frustrating because she can remember things like tv shows, but not to take her meds! You know, with cell phones now, you can set timers and alarms and reminders, so I just think she should at least ATTEMPT to be self sufficient! But I appreciate hearing from your perspective!!

Rebecca--I will email you! It is challenging with teens. . . .that's all I have to say!! LOL
Caity has gone from bed bound to now having 2 part time jobs, so I am happy about that!! I just want her to be independent and responsible and to take charge of her own life!! I have "let her go" to try to take her own meds, but I know she is not taking what she needs to be taking, and I am so afraid to go backward. Apparently, she does not share that fear!! aaarrrgghhh!! I am afraid she is going to have to crash to learn. . . . . Not what I want at all!

Oh, and btw, she is on a modifed Cowden approach! Samento, cumanda, Banderol, detox things, magnesium, Vit C, probiotics, etc, etc. . .

Thanks again!
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