posted
Guys, I am so frustrated and confused about what happened and what to do about treatment.
I was doing very well on Minocycline, Rifampin and Azythromycin. After 3 weeks on these I was starting to feel normal again and feeling really positive about treatment.
Then I started with hives from Sunday to Wednesday even on Benadryl.
Went to the ER on Wednesday night feeling like my throat was closing up. However while I was there the checked my oxygen saturation and all was fine. But still ended up with a single dose of Prednisone and antihistamines.
Now my LLMD has recommended that I stay off of all abx and wants me to wait until I have allergy testing done to go back on anything.
My symptoms, now 5 days off of abx, feel like they are starting to return. I had my anxiety back in full force last night which of course led to insomnia/sleep issues. My hands and legs are getting the numb/pins and needles feeling back again as well.
My questions, if you've actually read this far, are as follows:
1. What is the likelihood that the hives were actually part of either a herx (which, by the way would have been on course for anywhere between when the hives started and now)or just something caused by the bugs? My LLMD mentioned in passing when I talked to her about all this that she has seen Babesia cause hives itself???
2. The throat closing up feeling. Since I experienced this I have seen other posts in the last few days about others having this sensation. Do you think it is possible that this too was just part of a herx or what the bugs do?
3. I am thinking of trying to start up the Minocycline again tonight. Is this really a dunb idea? I am thinking that if this was in fact an allergic reaction (which I am wondering about now) it was to the Zith. Seems to fit the pattern of others who have had a reaction to it. So I am wondering about starting the Mino this weekend and adding back the Rifampin on Monday and seeing what happens. I'm close to the ER...
I know it is only a month until my allergy testing, but it took a month to start feeling well again (I know how lucky I am that I responded so quickly!)and apparently only a few days to start feeling bad off the meds. I realized just how bad I had felt and how much this disease affected every part of my life, only after I started to feel better again. I don't want to go back there. But I don't want to be stupid either. If trying to add the meds back gets overwhelming thumbs down here I guess I'll reconsider.
Thanks for the input - you all have such a collective wealth of knowledge. I am hoping for some feedback.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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posted
I feel your frustration as I am on an abx break for allergy testing too.
Some of the sensations you described could be herx reactions. I have had itching from a herx, but never hives. It is tricky to know for sure.
And, since an allergic reaction can be life threatening, it is better to be safe than sorry.
Symptoms coming back so soon could be indicative of a co-infection and not lyme. Maybe bart. Is that what you were treating?
Maybe it's possible to get allergy tested sooner? Maybe a different doc or if there is a cancellation? That's what I would try to do.
Posts: 581 | From CT | Registered: May 2008
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posted
Hives + throat closing are classic allergic reaction signs. I don't think based on what you have said you call tell which medication is the one that caused it. It could be anything you were taking at the timeframe that it happened.
Posts: 526 | From NJ | Registered: May 2007
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posted
I would rather you be safe than sorry. Throat closing up sounds way too much like an allergic reaction and nothing else.
Just my 2 cents.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I doubt the Minocycline was responsible. If it were me, I'd give it a shot at a low dose. Maybe half of what is normal. If I had the reaction I'd know to just let it go and take more benadryl and go from there.
Sounds like a fast reproducing co-infection.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Everytime you stop abx this is what will happen. I know firsthand. Stop abx and start salt/c and start healing. I am honest. Abx don't work.
Posts: 82 | From philadelphia | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
For me the throat closing up sensation is a lyme symptom. I know this because it happens when I am on or off antibiotics.
It is just a "sensation", because I can drink, eat and talk. If my throat was actually closing up, none of that would be possible.
I would recommend you stay off antibiotics for several weeks and see what happens. This is because an allergic reaction can be worse the second time around. If you stay off antibiotics long enough to completely clear your body of them and you still have the throat issue, it is likely a lyme symptom. It takes more than a few days to rid the medication from your body. Yes it is too soon to start back on it.
My daughter had an allergic reaction and it lasted on and off for 2 weeks after stopping the medication. It is better to ere on the side of caution. I would listen to what you doctor tells you. You may need to change to a different medication.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Aimee: Just wondering what you decided to do? Take the mino or wait for testing?
Posts: 648 | From northeast | Registered: Feb 2009
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Shosty
Unregistered
posted
If it is an allergic reaction, it is probably not dose-dependent, meaning the reaction with a smaller dose will be just as bad as if a larger dose was taken.
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posted
I really appreciate all the comments. I wasn't able to log on till this evening and read all your posts so I kind of went out on my own and against what is probably better judgement, start the mino again this morning. So far, so good. I took the evening dose about two hours ago and still feel fine. I really think it was the Zith if it was one of the abx at all.
I actually found out that I got a cancellation appt with the allergist for Monday for a consult but will have to be off all antihistamines for 7 days before she can do the testing. I stopped them today so hopefully I can squeeze in the allergy testing and get the results before my LLMD appt on the 13th.
I have never gone against Dr's orders before, ever. But I just was so frustrated with the symptoms starting back after making progress. Thankfully, so far things are okay and I think I would have had some issues by now if it was the Mino.
Yes, I am treating Lyme and Bart and am also positive for Babesia but short of the Zith in my combo for the Lyme and Bart we weren't addressing the Babesia yet. I am guessing since I slid backwards so fast it is the Bart that is causing the most problems right now.
So, I am going to keep on the Mino for now and meet with the allergist on Monday. I know for sure I won't add back the Zith until I know for sure whether what happened was due to that or something else. I'm not sure about what to do as far as the Rifampin goes. Never been a renegade anything, so going against what I have been told to do makes me nervous, but so does feeling all the initial miserable symptoms creep back up.
I'm not sure I agree that abx don't do anything. I think they have gotten alot of people well. And so far, I haven't been on them long enough to know whether they will work for me but I plan to continue on them and see. Thank you for your input though, I've considered the Salt/C but for now am just going to try one thing at a time. I'm still getting my feet wet with all this and hoping for the best. I don't think I've had this for any more than a year so I'm hopeful that I have a good shot at getting rid of it.
Thank you all again for your feedback, I really appreciate this forum and keep you all in my prayers.
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Aimee, Hang in there. I had high live enzymes from Rifampin. Lot's of side effects too.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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