I recently joined this forum in search of another LLMD for my wife and to get answers for myself. Thanks to a few recommendations we are now going to Springfield in a week to see our second LLMD (first one retired).
Now I have question...
Earlier in the year my wife was on IM Rocephin and things seemed to be improving w/ her quite rapidly. Once the 4 months of that was over our LLMD of the time (now retired) put her on amoxi/inh/flagyl/zithro combo, which was to go another 4 months and we'd supposedly be done with this whole thing (holy were we excited!).
However, since then she can't stay on the 4 meds (especially zithro) as they severely interfere w/ her heart. She would periodically go off one of them (either inh or zithro) and start feeling pretty good then go back on all 4 for a spell. Now, she has lost most of her energy, has constant heart troubles and seems worse off now than she has since we started all this 2 years go.
Is it possible that she has relapsed? thus knocking us all the way back to starting treatment from ground zero? Are the irregular heart beats etc part of this whole thing or related to treatment or a cause of all the abx's?
Like I said above, we have a new appt. w/ our new LLMD and we are also seeing a highly recommended cardiologist next week.
This is really frustrating for both of us especially now going into the holiday season (which I'm sure we're not alone in our frustration). My wife is young (20's) and we're extremely anxious to put this behind us.
Any thoughts are appreciated.
-------------------- supportive spouse of Lyme suferer. Posts: 14 | From UT | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes, people can get worse again very quickly if they are neuro Lyme!! Sorry to read it. I am glad you are seeing the cardiologist, I am glad you are seeing the new LLMD!!!!
WELCOME to LymeNet*)!!!
You're a good husband*)! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Lyme treatment is long and hard.
I'm glad she's seeing a new LLMD to sort this all out.
Has she been tested for babesia? My heart symptoms came from the babs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Along with the possibility that lyme is still there, please consider the possibility of viruses.
posted
So sorry to hear this....sometimes I think its harder on my husband than myself !! I am experiencing something similiar.
Finished IV Rocephin few months ago and now I'm having Lyme symptoms. I ended up seeing a cardiologist when I was really sick because of so many heart symptoms.
Fast, irregular heart beats constantly. Had every heart test you can think of. I checked out ok other than the fastness of my heartrate.
My LLMD says she sees this all the time with her Lyme patients and reassured me but also said it was good I had a cardiologist monitor me as well throughout my treatment because of the frequency of these heart symptoms.
It drove me crazy, it kept me up at night sometimes. Made me feel like my heart was coming right out of my chest. Its very scarey to have these symptoms and I feel for her. Take care and good luck at the new doctors visit.
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Its possible. Anything is possible with lyme. I have neuro lyme, and one MINUTE I can be fine, and the next in a
lyme rage throwing things, or on the couch with a migraine.
What concerns me however, is you mentioned two years, and ran off a list of antibiotics- yet none of those touch coinfections....
which *MAY* be why she is still sick. Those coinfections MUST be treated, whether they show up positive or NOT.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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I usually don't have a lot of time to be on here between work / helping my wife and chasing our 3yo around.
As for coinfections go. .. We were both under the impression that the rocephin treated the Lyme and the current abx's were for coinfections such as babs. But what reading here is thatay not be the case.
Also, although we are seeing a cardiologist this week it seems to me after reading g several posts on here that the chances are slim they will find anything or even do anything more than rx some beta blockers and send us on our way (already on toprol). We've been to the er a couple times in the past and have had several tests run to try and see why her heart was always racing but the test never showed anything unusual.
R
-------------------- supportive spouse of Lyme suferer. Posts: 14 | From UT | Registered: Nov 2007
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