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Posted 7/15/2021 11:27 PM (GMT 0)
I am having unrelenting pain while in early weeks of treating. It’s brought on so much panic and has brought me to my knees. None of the natural stuff the doctor gave is helping and the gabapentin I have just make me feel worse. What do people use for severe pain management? I mean, this is not unlike chemo so it seems pain management should be taken very seriously.
Posted 7/16/2021 1:17 AM (GMT 0)
You should not be in unbearable pain. Please talk to the doctor. You may need to reduce dosage or use a pulsing schedule. Treatment should not be excruciating.
Posted 7/16/2021 1:21 AM (GMT 0)
That’s what I thought but so many people on this fb forum have said they were in immense pain for months before feeling better. Going into this I thought I would be having flu aches for a few days but my back is hurting so badly and my gut is also hurting still. It’s been 4 weeks now.
Posted 7/16/2021 1:29 AM (GMT 0)
Do you suspect C-diff?

I went back and read your first post. You mentioned you had back injuries before. You mentioned treating with oral abx and then being switched to IV because of your gut.

I am wondering if c-diff can cause severe back pain. I wouldn’t be surprised. C-diff is very serious. Have you been tested for it?

Is the unrelenting pain in your back and/or gut? If so, that makes c/diff even more suspect.

Do you have pain in other areas?

Post Edited (WalkingbyFaith) : 7/15/2021 7:34:48 PM (GMT-6)

Posted 7/16/2021 1:49 AM (GMT 0)
I haven’t been tested for c-diff. I don’t have diarrhea or digestion issues and no doctor has brought it up. I had an ultrasound and ct scan and also showed nothing. Yes I’ve had back pain constant too.
Posted 7/16/2021 1:55 AM (GMT 0)
Were you having back pain after you got Lyme and before treatment started, or did the back pain begin after starting treatment?

What happened with your gut that initiated the switch from oral to IV abx?
Posted 7/16/2021 2:00 AM (GMT 0)
I had back pain before Lyme diagnosis and now it’s insanely painful. Doctor says it’s localized inflammation and die off. It’s awful.

So I was on oral mino and cefixime for Lyme for 6 weeks doing fine with herx and no abdominal pain. Then when they added in the third abx rifabutin at week 7-my gut went crazy and I had to go to the ER the pain was so excruciating. Had a ct scan and saw nothing and doctor took me off oral and started me on iv three weeks later.
Posted 7/16/2021 2:46 AM (GMT 0)
Hopefully some others with experience with the various drugs will chime in tomorrow.

I noticed you said Rifabutin here but Rifampin in another post. Which one was it?

Which drugs are you now taking via IV?
Posted 7/16/2021 2:56 AM (GMT 0)

Cosey said...
I had back pain before Lyme diagnosis and now it’s insanely painful. Doctor says it’s localized inflammation and die off. It’s awful.

So I was on oral mino and cefixime for Lyme for 6 weeks doing fine with herx and no abdominal pain. Then when they added in the third abx rifabutin at week 7-my gut went crazy and I had to go to the ER the pain was so excruciating. Had a ct scan and saw nothing and doctor took me off oral and started me on iv three weeks later.

Are you taking your abx with food?
If not Im thinking you should be - I take mine with food even IF the label says empty stomach - because of the length of time I have been on them.
I didn’t at first - when I thought I’d be done with abx in a couple months.

Of course discuss with your Dr who prescribed them.
Posted 7/16/2021 2:57 AM (GMT 0)
I took oral rifabutin for one week which sent my gut into shutdown. I now take Iv rifampin.

I hope others chime in too. Seems hardly any one is replying to my posts 😪
Posted 7/16/2021 2:58 AM (GMT 0)
When I was taking oral antibiotics I def took with food
Posted 7/16/2021 11:34 AM (GMT 0)
Cosey,

I'm sorry you are going through this and that you are in so much pain. Pain is debilitating.

When I first had LD tests (had tick and giant bullseye and super sick) I also found out I had had LD before (old infection vs new). It made sense. I was high functioning but would have bouts of pain and was misdiagnosed with fibromyalgia. My first and only symptoms with old Lyme was pain and exercise fatigue. After second bite that's when things went south. I digress. I've come a long way and you can too. But when I do get relapses I often get pain that begins in neck and goes all the way down spine -and some times even legs. Nerve pain. I try not to take any prescription/OTC medicine in general, but when it hits I take 2-3 Advil every six-eight hours. Put CBD salve. Humbled Healing clove hemp salve is the only one that works for me (it smells really bad!). I even got a medical marijuana card but have yet to use it and most likely will not. On really painful occasion I have taken the lowest dose of valium because it calms the nerve endings. I would not recommend this. If you have an addictive personality or this happens to you all the time it would be easy to become dependent. Dr. Weil the holistic doctor/author wrote a piece about how it helped with nerve pain. My doctor laughed at me because I refuse all Rxs and was too afraid to try gaba or naltrexone but asked for V. I also took up meditation and tapping. Sounds crazy but they really, really helped. Feel better.
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