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Lyme Disease
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Posted 4/3/2017 11:32 AM (GMT -5)
Hi everyone - I wrote my mom's story of ALS/possible Lyme in 2 other forums. I just wanted to give everyone an update and look for some advice on what to do.

So my mom has been doing antibiotics to treat "possible Lyme" for almost a month now. We have a conference call with her doctor this Friday, so we're not sure yet what he'll have to say, although he hasn't been very helpful.

So the same week my mom started taking the abx, her symptoms seemed to worsen after quite a long plateau, which we believed to be herxing (keep in mind it hasn't been "confirmed" by the LLMD that this is Lyme yet). So last week, she had 3 really great days. She said she was finally feeling more like her old self and was doing great in PT. She was even beginning to gain some sort of motion back in her left arm which has been completely "junk" for at least the last 5 months. We were getting really excited to see what we thought might actually be progress. She has been diagnosed with ALS, so you can imagine how good it was to see SOMETHING starting to come back.

So after those 3 good days, she's back to having bad days. Friday in PT it seemed as though all of what she had gained back in her left arm was gone again. She is extremely down in the dumps now because of it. Does this seem normal for Lyme? The fact that she was gaining anything back and that her muscles were trying to "fire" is not typical for ALS, so I'm looking at the other side of this as my mom is very discouraged.

Any thoughts or advice is appreciated.

-Kari
Posted 4/3/2017 11:56 AM (GMT -5)
It's absolutely normal for Lyme, particularly early in treatment is it noticeable because of the excitement of feeling better.

The bacteria have a cycle of their own, which can be coupled with our own body cycles. Some people even have renewed bad days around a full moon, but lets not consider that in your Mom's case right now.

If this LLMD knows his salt, he will know this is typical in a Lyme infection, and in any case always keep treatments up for 2 full months past last symptom.

But, I'm thrilled she had the good days because that should tell everyone it's Lyme, not ALS.
Posted 4/3/2017 12:01 PM (GMT -5)
I am happy to hear that she had 3 good days.

As julymorning said - this can happen with lyme.

Part of the issue may be an overload of toxins...they need to be flushed out.

Do whatever you can to help her detox.


Hoping that you see another good day...or two soon...to renew your hopes.
Posted 4/4/2017 6:28 AM (GMT -5)
Thanks for the response. My uncle actually has some sort of foot bath thing that you hook up and it is supposed to detox you. They did it on my mom this weekend and the water was black within 5 minutes of doing it. We're hoping this helped.

She also informed me last night that she's been having twitching in her diaphragm for the last few days which has led to her breathing becoming worse than it already was. This of course scares us. She also said she was having bad chest pain. I know that Lyme can affect the heart as well, so maybe that is why?

I'm so worried about her. Luckily her breathing is still okay with the bipap machine, it's just when she takes it off to eat, etc that she notices her breathing has changed. We have a conference call with the doctor on Friday about what the next step might be, so I'm hoping he knows what he's doing as I have been worried about that right along.

-Kari
Posted 4/4/2017 7:04 AM (GMT -5)
Hi Kari,

Your mom is so lucky to have you caring for her.

Not every family situation when someone has Lyme is like yours. The person suffering most likely is so happy to have some one who understands 😊 try not to worry as much, I know this is hard, and put your thinking on the positive track that your mom will be well again.
Posted 4/4/2017 9:20 AM (GMT -5)
Ask your mom if she has what feels like she can't quite get enough air into her lungs? This might be Babesia - a common co-infection.

If on the other hand, it's more like her chest is sore - in between the ribs or the sternum - this might be Bartonella, yet another common co-infection. But, since the oxygen helps it, I would assume it's the air hunger (can't quite get enough air) from Babesia.

It's actually quite common for other infection symptoms to become more obvious/pronounced as the bacterial loads for one of the infections she has lowers. We refer to this as the onion layer effect - as you peel away one infection, another one "shows" up.

Detoxing more may be of help still though.

And, congratulations on the few days of improvements!!! turn That's really wonderful!!! yeah
As the others have said, to have a few good days then to return to the way things were is hard to deal with, but it's quite common for these infections.
Posted 4/4/2017 9:37 AM (GMT -5)
As everyone has said, flares and roving pains are normal for lyme.

Actually I think everything is pretty normal for lyme. The list of possible symptoms is huge.

My warning to you and your Mom is that lyme is not like a cold or flu. You don't just take medicine and it is gone in a couple of weeks or a month. It can take a long time and I just want you to be aware of this. It is awesome to see good days and hopefully they will be longer and longer.

I don't want you to show disappointment on your face to your Mom. So I felt I have to tell you this.

She is a very lucky Mom to have you to care for her. Being a caring person takes it toll, so do take GOOD care of yourself. She needs you healthy also.

Personally I think it is harder being the loved one watching a loved one hurt. I would rather be the one in the hospital bed. That is sometimes easier than the fret and worry of watching.

Hang in there.
Posted 4/4/2017 11:01 AM (GMT -5)
I want to apologize, Kari, for the random post I made (which I just deleted), that made no sense. Somehow a post I intended for another question ended up here on yours.

Sorry!
Posted 4/4/2017 11:39 AM (GMT -5)
I'm no doctor, but I think it is a good sign that she had a period of days where she felt better! It is pretty classic to have these ups and downs, especially with the treatments but it is hard to pinpoint what exactly is going on and what mechanisms are taking place (is it herx, is it disease acting up, is it independent of treatments?). It can also be completely disheartening, it is a kind of whiplash and can be very psychologically taxing to get whipped back and forth and also feel better but then have it yanked away...

Btw, this is a bit biochem heavy but very interesting video on autophagy and the neurodegenerative conditions and it gets into some promising avenues of how to try and curb these diseases. My Dr has me on several of the supplements including vit D and curcumin supplements. Presentation is by Dr Steven Phillips, he is a very smart guy, he headed ILADS for a while and while video doesn't really get into it he suspects infections play a role in driving many of these conditions, or at least a large subset of patients with these conditions: https://www.youtube.com/watch?v=5_EiB_yCA7U&t=141s
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