posted
In the past week, I've started having chills off an on throughout the day. One evening I couldn't get warm even under an electric blanket ... and no hot bath for me with my mediport
When I'm not having chills, my temperature regulation seems fine...no night sweats, fever etc.
I also seem to be having increased neuropathy...the all-over humming has ramped up to tiny little sparks.
And, just lately, I seem to be having some mild occurences of the neuro stuff, like nightmares, that I had the first few weeks of rocephin (now on month four). (I'm also on month two of ketek.)
Any thoughts?
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
Monkeyshines, do you find the rocephin doing anythig? I had chills, herxes the first 2 days of treatment - lately, after 2 months of rocephin twitching (first lip, then nose).
Any psychological symptoms as well as physical. Since treatment, I had the bad herx 2 or 3 times. Rocking, nerves on ending than chills.
Do you have both?
Good luck - Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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liz28
Unregistered
posted
You must have read this a million times already, but chills are the #1 babesia symptom. Have you been treated for co-infections yet?
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posted
cigi, after initial herx from rocephin (mostly onset of neuro symptoms I didn't have before) I'm kind of back to where I was before, except more neuropathy. I'm starting to see some brief periods of morning improvement in terms of overall pain and stiffness, but they're fairly subtle, and they don't last all day.
liz28, thanks for pointing that out. I think I was focusing more on night sweats, rather than chills, for babs, but it did cross my mind. I haven't so far had any clearly babs symptoms (at least nothing that couldn't be attributable to lyme).
I have been repeatedly tested for coinfections, and apper to be clear of bartonella and erlichiosis (I've been on lots of abx over the past 2.5 years), but am not as confident of the babs.
My LLMD brought up babs last time I was there (and before this started). Given this new symptom and the conversation we had at my last appointment, I think pursuing babs might be the way to go next.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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liz28
Unregistered
posted
You know, there is a lot more energy in your writing now. It's interesting how people say they feel just as bad over time, and no doubt they do, but you can see a clear difference in their outlook just by reading their posts. Hope you feel a sense of moving forward!
Maybe it's for a different reason than yours, but I always get the nightmare thing after starting a new abx that shakes things up. It used to be scary, but now it's a great sign.
Lately, people have been suggesting here that you can just try artemisinin and see what happens. It's safe, it's semi-cheap, and if you have babs it'll kickstart your recovery, which could impress your poor beleagured doctor and get you a mepron/malarone script.
posted
Since I started treatment with various abx in October 2003 I had NEVER EVER any chills - only heat flashes.
Now I'm on my 27th day of Ketek and since about one week I notice me having chills. Not getting warm in bed - putting on extra layer of pyjamas and socks - falling asleep - getting heat flashes - taking off extra layer of dress, and so on ...
Could it be the Ketek? Interesting to read chills could be Babs. I suspect having them.
Accordingt to my experience, every new abx that I took was stirring up another symptom, before it became better.
If chills are from Babs - could one conclude that Ketek is working against Babs? Forgot to mention that I was also on Flagyl together with Ketek in the beginning.
posted
Yes, my LLMD has been thinking babs, since I'm not progressing as much as hoped. I've been a little skeptical (though have total faith in my LLMD) since I didn't feel that I had any obvious symptoms.
liz28's observation that I am actually having some improvement feels right, though I've traded for some new symptoms. lla2, babs being 'uncovered' somehow also sounds like a good theory.
I'm due for another visit soon, and think I may see mepron (or artemisin) in my future.
Thanks, all.
monekyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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I never knew chills could be the sign of anything other than Lyme, which I assumed was causing mine. I get them every few days. I keep a down quilt ready on the couch and just wrap myself up tightly in it until I warm up. I do not ever run a fever with them.
Two weeks ago, during my last check up, I asked my Doctor if he had tested for any other infections when he had ordered my bloodwork. He seemed somewhat embarrassed as he admited he had not. Then, he said he was thinking of possibly putting me on an anti-malarial drug. I began to suspect that possibly more might be happening in me than I had thought. He also talked about going to intra-veinous medicines by next month.
I am on Doxy 400 mg daily now which is rough enough. It has cleared up some of my symptoms, but not all. And, according to the calendar I started keeping, I herx every three weeks and one day for several days.
I think I may need a new Doctor. Yet, one of the leading Lyme Doctors in the country sent me to this one to be certain I did not have arthritis. He told me to have this man treat me for Lyme after my bloodwork showed a clear positive and my x-rays no arthritis.
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