posted
My husband is on these three via IV. He can't stay awake. He falls asleep anywhere and cannot function. He really feels like if he blasts through it all he'll get functional again. He took a break a couple of weeks ago and felt almost normal. We had a wonderful father's day weekend and we went on bike rides as a family. It was wonderful.
He's back on full force and he's back to falling asleep on the toilet, at the computer, while drinking tea...etc. He's been off work for the past 5 months and needs to get functional again.
So, I'm wondering about pulsing or lowering his dosages. We know that underneath this response to the antibiotics he is getting better. His pain is much less, when he takes a break he has mental clarity and gets his energy back. He does believe this is working. He's been on treatment since 2004, but started the iv in January.
He's been having drenching sweats and we are going to request adding quinine into the treatment. He has been on that in the past and had an amazing response, but then plateaued and then backslid, so his meds were changed. We've got an appointment coming up at the end of this week.
Any feedback? Similar experiences?
Thank you!
Mary
-------------------- Mary Posts: 25 | From CO | Registered: Oct 2003
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Treatment is rough to say the least!! Maybe he should seek a happy medium. Many LLMD's advocate backing off the meds when the herxing is too severe.
His quality of life would likely improve if he when take a day's break now and then.
Babesia is difficult to kill out. Maybe he could ask his dr about artemisinin and zith or some other combo.
remember....I am not a dr!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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I've been on IM Rocephin, oral zith and flagyl since Aug 06. My experience has been that I began feeling better almost immediately, while on fairly low dose of all meds.
After 5 months, started increasing flagyl and zith. I had a difficult time increasing the zith, but finally worked up to dose my LLMD wanted.
However, found that I couldn't tolerate the higher doses (anxiety, depression, worsened pain). We reduced the doses of all 3 meds and it has made a world of difference-have been feeling wonderful for 8 weeks (until last week began Babesia treatment).
Just my opinion, but possibly your husband could be functional and feel better on lower doses of meds. My LLMD doesn't like his patients to herx very much-believes too much causes tissue damage.
For myself, I'm happy to take lower doses of meds and not feel horrible, even if it means a longer treatment period (although I don't know that it would).
Good luck! I hope your husband feels better soon.
-------------------- Kaitlin Posts: 67 | From CO | Registered: Apr 2007
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Thank you so much. We're going to try lowering the dosages- I'll be keeping my fingers crossed that we can get him up and moving while on treatment. That isn't too much to ask is it?!
We really thought he'd be able to work on this treatment, but there has been no way. After 6 months enough is enough.
-------------------- Mary Posts: 25 | From CO | Registered: Oct 2003
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He had his appointment and has a bit of a new gameplan. He's going to keep up the iv for 2 more weeks and then switch to oral flagyl. They really encouraged him to keep with the flagyl since he's reacting so strongly to it. He's going to stay on the iv rocephin and switch to oral zith as well. He's adding in a med that substitutes for quinine (I didn't catch the name).
Hopefully he will be back to work by August.
The thing is, he's really feeling like he's making progress, but the flagyl just knocks him out.
-------------------- Mary Posts: 25 | From CO | Registered: Oct 2003
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
mary-
i was on the same combo (switch the zith for biaxin) and i do believe although it was helping me kill the damn little buggers it was also becoming toxic
i backed way off and started to feel better
mind you, i am still at about 30% functioning level, but that's better than when i was pounding my body w abx.
i am not saying high dose abx dont help because they certainly do and got me out of the woods.
but, now i am on lower doses of different combinations of things, and hopefully slow and sure will be the way to heal this.
hope your husband is feeling better soon
i forgot to add- be careful how hard you push him and how anxious you seem for him to return to "normal" life. this is a devastating illness and can take a long time to heal. just speaking from experience. i have been pressured in the past and it only makes things worse. we can only do as much as our body allos
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