Read Between The Lyme
#LivingwithLyme
I Still Gots the Lyme!
Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.
I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.
But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!! It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely. When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:
- the additional thyroid medication she put me on in May,
- being off of work (I had all of June, July and half of August off completely),
- and maybe the combo therapy of antibiotics ahe put me on in June.
- But really, I don’t know for sure.
I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.
At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return.
At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related.
I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂
I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.
That ain’t happening again. Not on my watch.
Peace to you, friends. Until next time xxoo – Belle
Thanks for Spreading the LOVE!!!
9 Comments on “I Still Gots the Lyme!”
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Hi Hun good to see you back. Maybe after awhile you may feel rough until your body adjusts to the withdrawal of the antibiotics. I do hope you can stay better if not perfect as best as you can . Send hugs and positive vibes.💜💜💜
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Hi friend! I’m going to give it a few weeks. I would really like to be off the abx for a bit if possible. How are you doing? I feel like I’ve been gone so long! XXOO
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It does seem a while, but all is fine here. My heart beats and my fingers work . Be well Sis be well 💜🖤💜
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I hope you get some relief soon. I have a hard time finding the line between thinking everything is a symptom and not wanting to think like that and soldiering through. Lyme sucks.
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I want to ask if you have tried Minocycline HCL 50mg? I was on it for 40 days and it cleared up my brain issues a lot. This one can penetrate the blood brain barrier.
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Hi Sherry! I was on minocycline 500mg for awhile but it was a few years ago. Recently, I’ve been on Rifampin, ceftin, and Azithromycin, and I had been feeling better until a few weeks ago. My doc had me weaning off all the meds this past month, but I may need to get back on them. Just did some blood work so we’ll see. How are you doing??
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I am so-so. Not as bad as before the meds. Pneumonia did a number on my energy and stamina. PT should help.
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Hang in there kid. You will find a way to beet this if you just keep at it.
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You too, my friend!
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