posted
How long did it take before you started herxing? I have been taking it for over a week and the only difference I gel is that I am exhausted. I cannot stay awake to save my life. On any other antibiotic I was herxing by day 3.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
I wondered about that Tutu. I guess I was expecting my typical flu-like feeling, feverish, pain, chills, wish- I- were_ dead kind of experience. I know that some people don't herx for a couple of weeks or even a month. Just not sure if it differs by drug, or person, or both. Thanks
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
My daughter just got her picc line 2 days ago and has had 2 doses of rocephin so far. She is utterly exhausted. She had been off her orals for 6 weeks, and was managing fairly okay energy wise. She was able to get herself up and off to school (she is 17).
The past 2 days she can barely get out of bed. Is this a herx from the new abx? What can be done? B 12 shots maybe?
How are you doing today?
Posts: 42 | From Northeastern US | Registered: May 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Herxed and developed new symptoms over time. Bad two weeks then by third week I was 90% better. Thereafter, every week started to develop new symptoms.
I was on IV Rocephin for three months.
Posts: 2094 | From NY | Registered: Oct 2011
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Lizzysmom, I am now finishing up my 3rd week of rocephin. I pulse it, so only 4 days a week. The exhaustion is getting a little better. I still fall asleep within a minute or two of getting horizontal, but not falling asleep upright anymore.
I have been taking rifampin since May(ish) and had terrible insomnia from it. I only got 4 hours of sleep, on a good night maybe 6. I stopped the rifampin just before I got my piccline placed. I was wondering if the exhaustion was from all those months of no sleep. But hearing about your daughter, I think it might be the med.
I saw my LLMD yesterday, and he was very pleased with my reaction to the rocephin. He said my dose is too low, and cleared me to start ramping up. I have had 2 labs drawn since I started IV, and the last labs, oddly, were better than the week before. My labs progressively got better last winter to spring. Then over the summer I relapsed pretty bad, and all my bloodwork dropped back to where it was in February. This last draw was the first time my bloodwork was headed in a good direction since my relapse. My LLMD said this was very strange, because starting a new therapy, especially one as taxing as IV, results in a drop in lab results. I am reacting the opposite, which might be odd, but I will take it!!
Strangely, I have felt better the last week than I have in months. I don't get it, but I am trying to not question it. I am catching up on my chores and responsibilities while I can. I guess rocephin is a good match for me. I feel optimistic about it.
I hope your daughter does well on IV. I have heard good things for many people. I guess as long as you can stay on it as long as you need to. I mean, without insurance cutting you off too soon. I don't have insurance, so I don't have to worry about that.
Thanks for the other responses. I guess my herx will come when I get enough of the medication in my body.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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searching, thanks for all that encouragement. I am very hopeful this therapy will help get her through to the next level. Its such a hard thing to not get too excited when you are in a good stretch, like she has been for the past 5 weeks. Waiting for the other shoe to drop all the time, and it feels like its dropping right now for her.
Glad you are able to get some stuff done. Nothing like a good run at chores to give you a boost!
Are you doing 2 gms rocephin push? that's what my girl is doing. no mention of increasing, but he does want her on for 3 months. Insurance is saying only 28 days....we'll try for more coverage, but not optimistic.
Posts: 42 | From Northeastern US | Registered: May 2010
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posted
I don't think I am allowed to say what exact dosage I am taking, but I will say I am doing a drip, not a push. I am increasing it by one gram a week, until I am at the full strength my LLMD wants me to be, or until my body cannot tolerate any more and I am herxing too badly.
In case your insurance decides to cut her off, look into Infuserve America. They are in Florida, but will ship overnight. I have read that you pay them up front, and then they get you reimbursed by insurance. Supposedly, they are able to get more insurance to cover this way than if you have to get pre-approval. And if you do need to pay out of pocket, they are by far the cheapest. They gave me a $1200 discount, and I paid $250 for the first month plus 85 for shipping. The local infusion company I had show me how to do everything charged me almost $500 for one week. Huge difference.
Anyways, I hope the best for your daughter. I can only imagine how hard it must be to see your child go through this. I am thankful everyday to be the one who is sick instead of my children. Of course, I would much rather we are all healthy, but I would trade places with my child anyday if they were sick. I am sure you feel the same way. She will be in my thoughts... sending good healing thoughts her way.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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