posted
My daughter has lyme/bartonella. She has a picc line for doxy and she started taking rifampin on Saturday. We had to stop the rifampin yesterday because she is herxing so bad.
She really can't eat. I'm sitting here listening to her dry heave and gags as she lays on the bathroom floor. I feel so helpless that I can't do anything for her. Her hips, legs, and heels of her feet are killing her. She says she is in so much pain when she walks.
I just needed to vent to everyone since I know everyone has been in her place before. Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
I am so sorry that your daughter is suffering, and that you have to watch it all, unable to do much. I will tell you that for me, rifampin was terrible. It DID help ultimately. I went from not functioning at all, to semi-functioning now, 4 months later.
But in the beginning, the herx was brutal. I felt like I was dying, although I wasn't. Rifampin also counteracted both my pain medication and my sleeping medication. I don't know if your daughter takes anything for pain. Rifampin can make the pain/sleeping pills more intense or less effective.
It does get better. She needs to detox, detox, detox. How long has she been sick and how long has she been treating? There are some really good detox methods that I can share with you if you want. Just pm me and I can go into detail. No sense in spending the time to write it all out if you are already doing them, you know?
Anyways, tell her that there are people who know exactly what it feels like to be in her shoes. For many people rifampin has helped them get over the hump in their treatment. It is a rough ride though. I am so sorry for both of you. I know her pain, and since I have kids myself, I think I can imagine your pain as well.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
I'm so can relate to her pain!! That's just so sad!
If she's on IV please consider having her labwork done. I just found out my liver is not working properly after being on Rifampin for ONE day! So it doesn't take long for the damage to occur. The last thing you need is liver damage!!
I have severe leg/feet pain and neuropathy and brain lesions. Trust me I want to get well too. But not at the expense of my liver. I pray she will feel better soon!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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I know that her feeling bad means she is getting better. I just feel like when I give her those meds it's like poisoning her. My ex-husband, my mom, my grandmother and aunt all keep telling to take her for another opinion. No one understands. We are really happy with her dr.
I just want to help her so bad...I keep asking her what she needs or what I can do. I know she is tired of me asking. This whole disease just sucks.
Posts: 107 | From New Jersey | Registered: Nov 2009
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ugh.....I didnt do well on rifampin either, had to go off it. It's so hard to push through. Praying for her.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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My husband can relate to being in your shoes. He will sit with me when I am puking. A cold washcloth on my forehead and wiping my face makes me feel better. He puts a towel on the floor with my pillow.
Its harder on others who want to help make you feel better. No matter what they want to do for you they can't take your pain away. Just knowing you are there is all you can do.
Mom you are setting a fine example for her. She knows you love her and feel for her. Even as sick as we are we know our loved ones are the ones who were there to encourage us and clean up after us.
My son had 5 major surgeries as a child. I was the one who had to make the call on whether to allow the operation or not. He is 30yrs old now and we are very close out of all my children. I believe that comes from being there for him through it all.
Turns out the first doctor who did the first 3 surgeries was a quack and messed him up. Yeah he came highly reccommended. I have to live with that everyday.
We put our trust in dr's to do whats right. As everyone here knows we educate ourselves as much as possible first.
As a parent we do what we feel is in our childrens best interest. Search out those who support you right now.
I don't know how old she is but have you asked her how she feels about the treatment she is getting? Does she understand why she is getting this treatment? I can see you love her dearly!
Big hugs from one mom to another. She knows you love her.
-------------------- A little lymie... Posts: 104 | From Greener Pastures in PA | Registered: Sep 2011
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