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Lyme treatment causing leg weakness

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Posted 12/14/2014 11:23 PM (GMT 0)
I am new to this blog and writing on behalf of my mom. She was diagnosed with ALS in 2013 but did not progress like a "typical" ALS patient as her doctors kept telling us. I researched and decided she needed to be test for Lyme. In September we tested her and it came back positive for Lyme. She started treatment in October. A few days after she started IV antibiotics, her legs became very weak, her balance is off now as well. I'm wondering if this is normal on the treatment for Lyme or if it has happened to others? She did not have these issues with her legs prior to starting the IV antibiotics. She has lost all abilities to speak, swallow and blink on command. Otherwise she was strong and functioning fine prior to the antibiotics. Thank you for any help you can offer.
Posted 12/14/2014 11:41 PM (GMT 0)
Hi Neziv—
Welcome to the forum! I am so sorry your mom has been down such a difficult path but it's possible you might have turned a corner with this new diagnosis. Let's hope so.

You might want to familiarize yourself with the "New to lyme" thread at the top of the page if you haven't already—invaluable information that many other lymees have shared and documented over time, which has contributed to such a great community here.

One of the moderators will likely be along to welcome you as well. I just wanted to suggest that it is VERY common for current symptoms to get more intense or to experience new symptoms after starting treatment. As the microbes are destroyed with the treatment, the body often has a tough time removing the debris and toxins from the body, which often triggers those symptoms. It's best to implement a detoxing protocol to help the body process the aftermath of the treatment.

For me, weak legs have been intermittent and tough to deal with. The balance issues, as well (I'll bet others will also be along to chime in about that symptom). We believe that when these symptoms get stirred up with the treatment (antibiotics or herbs) it usually means that the treatment is working. ;) It's never pretty but it means you are making an impact on the infection.

I hope she is seeing a lyme specialist—a "lyme literate MD" or LLMD? Many regular MDs—even those who are open to lyme often follow outdated guidelines and short change the treatment. A lyme specialist is ideal but other lymees have also had luck with convincing their regular MDs to extend treatment for the best results.

Regarding the speak/swallow/blink issues—could this be bell's palsy that is common w/ lyme & co-infections? Has she been checked for other signs of a stroke?

Please let us know how things progress and post any other questions you may have.

-p
Posted 12/15/2014 12:09 AM (GMT 0)
Dear Pirouette, This makes me feel much better. Everything I have read says that it is possible for this to happen but her Lyme doctor didn't think so. She is seeing a lyme specialist that has committed to treating her for several months or longer if necessary. I will say that since starting the antibiotics, her smile has improved (facial paralysis), she has been able to suck and swallow ice chips without choking, and she has sensations in her tongue and lips returning. She also had two doctors in the last two weeks say that her reflexes have improved completely. It's just the weakness in the legs and her balance that we are so concerned about right now. I just needed to hear that this can happen with treatment and has happened. Thank you for you quick response. I appreciate it more than I can say. I will also talk with her about detoxing. I read up on that a bit in October. I think the foot bath would be best for her. She cannot take baths because of her feeding tube and IV Picc Line. If there are other/better detox methods I would love to hear about them. Thank you again. I feel like you gave me some hope tonight. I really appreciate it and I hope your fight against Lyme is bringing with it some healing too. Thanks again!!!
Posted 12/15/2014 12:37 AM (GMT 0)
That is really wonderful that she's had some progress on the palsy symptoms (paralysis) and swallowing. Boy, she's been through some rough times (as you have as well—she's very lucky to have you). Here is a recent conversation about Bell's Palsy:
www.healingwell.com/community/default.aspx?f=30&m=3269815

Detox is a common topic on the threads here. I did a quick search and found a recent conversation—feel free to join in and ask any specific questions you have to the others in those discussions. The key to detoxing is to keep it consistent and go slowly at first so you know how much your body can tolerate. Some people can get overwhelmed at first so it may take a slow start to find her sweet spot:
www.healingwell.com/community/default.aspx?f=30&m=3268479

I am also on IV abx so let me know if you have any q's about that. And thanks for the well wishes! I am fighting the good fight!

-p
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