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Suggestions Please?
My Lyme Target was found and treated on Oct 19th 2012. I had one dose of IV Rocephin in the ER, was on Doxy and Keflex by mouth for one week, but could not tolerate it. Then I was on Zithromax and Ceftin by mouth for another 3 weeks. I thought I would feel so much better off the meds. When the meds stopped I got headaches and aches again. Now I am on Amoxicillin 500 mg, 3x day for another 30 days. My bloodwork came back highly positive for Lyme at the end of the Zithromax and Ceftin???? Why?? What can I do to make sure I get this devil out of my body????
(part 4 of message)
It sounds like the treatment you were given is intended for a recent, single, uncomplicated infection, but it didn't work. So the question is, why didn't it work, what infections do you still have, and what treatment to take now?
If your doc tells you you are cured because you got a few weeks of (x,y,z) meds, and any symptoms you have remaining are you immune system overreacting to a now-dead infection, say thank you, and GET COPIES OF ALL YOUR TESTS DONE BY THAT DOC (the doc's front desk will give them to you, and say that you copies of ALL the tests for your records, not just the most recent ones).
Then take the test copies (keeping a set for yourself -- you may need them in the future for a new doc to look into the past) to a new Lyme specialist -- and don't wait. You sound like you feel lousy enough to be very motivated, and that' s good -- but only from the point of view of being motivated. I've been where you are, and understand how confusing and painful it all is, to be messed up physically and knowing things aren't right, but not having treatment or guidance that fixes things.
If you need help finding a new Lyme specialist, let us know, and we might able to suggest someone. I see you are in Rhode Island, yes? There are also resources online to help find a new doc.
Take care, let us know how we can help -- we've been where you are.
--end--
It sounds like the treatment you were given is intended for a recent, single, uncomplicated infection, but it didn't work. So the question is, why didn't it work, what infections do you still have, and what treatment to take now?
If your doc tells you you are cured because you got a few weeks of (x,y,z) meds, and any symptoms you have remaining are you immune system overreacting to a now-dead infection, say thank you, and GET COPIES OF ALL YOUR TESTS DONE BY THAT DOC (the doc's front desk will give them to you, and say that you copies of ALL the tests for your records, not just the most recent ones).
Then take the test copies (keeping a set for yourself -- you may need them in the future for a new doc to look into the past) to a new Lyme specialist -- and don't wait. You sound like you feel lousy enough to be very motivated, and that' s good -- but only from the point of view of being motivated. I've been where you are, and understand how confusing and painful it all is, to be messed up physically and knowing things aren't right, but not having treatment or guidance that fixes things.
If you need help finding a new Lyme specialist, let us know, and we might able to suggest someone. I see you are in Rhode Island, yes? There are also resources online to help find a new doc.
Take care, let us know how we can help -- we've been where you are.
--end--
(part 3 of message)
2 -- You may, without knowing it, have previously been infected with Lyme (and/or some of the co-infections), as in a year or more ago, and simply didn't know it. Sometimes the immune system is able to hold an infection in check and keep the symptoms down to nothing or to simple things like tiredness that area easy to blame on overwork or stress etc. Then if you get another tick bite, the immune system can be overwhelmed, since it was already busy corralling the old infection, and suddenly you get worse and a short, quick treatment that may work for a new, not-entrenched Lyme+ infection doesn't work for all that your immune system is dealing with. It's like a kindergarten teacher who can handle 20 rowdy kids, but if the class size suddenly doubles to 40, things are gonna get out of hand.
(continued in next message)
2 -- You may, without knowing it, have previously been infected with Lyme (and/or some of the co-infections), as in a year or more ago, and simply didn't know it. Sometimes the immune system is able to hold an infection in check and keep the symptoms down to nothing or to simple things like tiredness that area easy to blame on overwork or stress etc. Then if you get another tick bite, the immune system can be overwhelmed, since it was already busy corralling the old infection, and suddenly you get worse and a short, quick treatment that may work for a new, not-entrenched Lyme+ infection doesn't work for all that your immune system is dealing with. It's like a kindergarten teacher who can handle 20 rowdy kids, but if the class size suddenly doubles to 40, things are gonna get out of hand.
(continued in next message)
(part 2 of message)
I'm not medically trained, but my understanding is that if a Lyme infection is caught right away after the tick bite, then it can often be cured by a relatively short treatment course of antibiotics. It sound like your doc did that, which is good news.
But if your symptoms are not gone, then it means the infection is still active, to my understanding. If your doc refuses to treat further, then I would quickly find a new doc. You do not need to tell your current doc you are seeing another doc for a second opinion, just in case you need to go see the first one again later. (Docs shouldn't be so touchy about things like that, but they are sometimes.)
There are two possibilities I can think of:
1 -- You may have co-infections, meaning other diseases separate from Lyme that the same ticks carry about half the time. These other diseases (like bartonella, babesiosis, ehrlichiosis, and some others) need separate testing and often different antibiotics from Lyme -- they just don't respond to the same meds as Lyme. An experienced Lyme doc knows from taking a careful history from you of you symptoms what other things to test for.
(continued in next message)
I'm not medically trained, but my understanding is that if a Lyme infection is caught right away after the tick bite, then it can often be cured by a relatively short treatment course of antibiotics. It sound like your doc did that, which is good news.
But if your symptoms are not gone, then it means the infection is still active, to my understanding. If your doc refuses to treat further, then I would quickly find a new doc. You do not need to tell your current doc you are seeing another doc for a second opinion, just in case you need to go see the first one again later. (Docs shouldn't be so touchy about things like that, but they are sometimes.)
There are two possibilities I can think of:
1 -- You may have co-infections, meaning other diseases separate from Lyme that the same ticks carry about half the time. These other diseases (like bartonella, babesiosis, ehrlichiosis, and some others) need separate testing and often different antibiotics from Lyme -- they just don't respond to the same meds as Lyme. An experienced Lyme doc knows from taking a careful history from you of you symptoms what other things to test for.
(continued in next message)
(part 1 of message)
Welcome to MedHelp --
Sorry to hear you are having such a rough time. I don't know what a 'Lyme Target' is -- are you referring to the circular 'bullseye'-shaped rash that some people get after a tick bite?
Every doctor is a bit different in how they treat Lyme and what meds they use and in what combination. What does your doc say about your continued symptoms?
If the doc says you have been fully treated and should be well, and that your continuing symptoms do not indicate a continuing infection, then I would ask what the symptoms indicate, if not Lyme?
If the doc has no answer or says you have 'post-Lyme syndrome', then I would find a new Lyme specialist right away.
(--continued in next message -- the system is locking up and won't take a longer message--)
Welcome to MedHelp --
Sorry to hear you are having such a rough time. I don't know what a 'Lyme Target' is -- are you referring to the circular 'bullseye'-shaped rash that some people get after a tick bite?
Every doctor is a bit different in how they treat Lyme and what meds they use and in what combination. What does your doc say about your continued symptoms?
If the doc says you have been fully treated and should be well, and that your continuing symptoms do not indicate a continuing infection, then I would ask what the symptoms indicate, if not Lyme?
If the doc has no answer or says you have 'post-Lyme syndrome', then I would find a new Lyme specialist right away.
(--continued in next message -- the system is locking up and won't take a longer message--)
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