Aa
I'll ask doctor--but asking you first
I was just wondering--when it was time to finally stop taking all the antibiotics (Jackie, this is probably mostly you since most of us are still in treatment), is it a weaning off thing or a "well, now we are done" thing?
I'm still on Mepron, Amoxicillin and Zithromax and planning to be for another month. Then, I will have been on treatment for four months, which is what my LLMD says is the "standard" treatment for persistent babesia, which she thinks I have based on symptoms and treatment responses. I wasn't convinced, then I was, now I'm not again :-) It is a thing with me I guess.
I was on the Mepron and felt better than I had in months--so, it must be the Mepron!!! YEAH!! But all babesia tests were negative. Doctor says, yea, but the fact that you feel better says otherwise, lets keep going for a bit. Well, while I was off the Mepron, I started sliding back--by the time I was back on it took me an additional couple of weeks to get back to feeling "better." Hmmmm. So, I told this to my LLMD and she said it sounded like MORE evidence that indeed the Mepron was doing something YIPEE!!! Except--now, still on the Mepron, back to feeling crappy. What the heck!!???!!!??
My blood work shows thankfully that the Mepron isn't causing problems with my kidney function etc. So, I figure I'll finish out the prescription for this last month and then start calling it quits. I've seen very little progress in the 7+ months of treatment, my tests don't really support Lyme/babesia/bart though my symptoms and weirdness are generally on target in a lot of ways. I hate being on so many drugs--and then the extra drugs to counteract the drugs (probiotics to counter the antibiotics plus my "normal" meds).
So, I'm starting to think end of treatment options. Cold turkey or slow--I've never taken this high a dosage of abx in my life--especially for such a long period of time!!!!
d
I'm still on Mepron, Amoxicillin and Zithromax and planning to be for another month. Then, I will have been on treatment for four months, which is what my LLMD says is the "standard" treatment for persistent babesia, which she thinks I have based on symptoms and treatment responses. I wasn't convinced, then I was, now I'm not again :-) It is a thing with me I guess.
I was on the Mepron and felt better than I had in months--so, it must be the Mepron!!! YEAH!! But all babesia tests were negative. Doctor says, yea, but the fact that you feel better says otherwise, lets keep going for a bit. Well, while I was off the Mepron, I started sliding back--by the time I was back on it took me an additional couple of weeks to get back to feeling "better." Hmmmm. So, I told this to my LLMD and she said it sounded like MORE evidence that indeed the Mepron was doing something YIPEE!!! Except--now, still on the Mepron, back to feeling crappy. What the heck!!???!!!??
My blood work shows thankfully that the Mepron isn't causing problems with my kidney function etc. So, I figure I'll finish out the prescription for this last month and then start calling it quits. I've seen very little progress in the 7+ months of treatment, my tests don't really support Lyme/babesia/bart though my symptoms and weirdness are generally on target in a lot of ways. I hate being on so many drugs--and then the extra drugs to counteract the drugs (probiotics to counter the antibiotics plus my "normal" meds).
So, I'm starting to think end of treatment options. Cold turkey or slow--I've never taken this high a dosage of abx in my life--especially for such a long period of time!!!!
d
Well, as is noted in above comments, the length of treatment may depend on what infections you have, as well as how long you've had them.
I can only speak from my experience, and I'm coming up on 4 years of treating with combinations of oral antibiotics. I don't know when I was infected, but my symptoms became disseminated and lots of neurological stuff started in '07. I wasn't diagnosed until late '08, and at one point while undiagnosed I was given a few weeks of oral steroids which may have complicated my case. I didn't see any real lasting improvement until I completed 9 months of treatment.
I'm greatly improved and I do attribute the improvement to treatment. I work full time (though currently on leave for a non-Lyme issue) and many of the neuro symptoms mostly to fully resolved. My biggest ongoing issue is fatigue. It can come out of nowhere and still be very debilitating. In fact, somehow my fatigue is no better and may even be worse than it was earlier. I'm not certain what to think of it being my primary ongoing issue. I am under the care of an LLMD right now who wants me on a combo of 3 antibiotics but I'm not feeling up to that and so right now I'm not on anything.
It is a long and confusing road to be sure. My original LLMD (I moved) always said that Bart was my biggest issue (and my new LLMD agrees with that) and he also said that I was slower to recover than he would expect, so hopefully I'm on the long end of required treatment and not typical!
I can only speak from my experience, and I'm coming up on 4 years of treating with combinations of oral antibiotics. I don't know when I was infected, but my symptoms became disseminated and lots of neurological stuff started in '07. I wasn't diagnosed until late '08, and at one point while undiagnosed I was given a few weeks of oral steroids which may have complicated my case. I didn't see any real lasting improvement until I completed 9 months of treatment.
I'm greatly improved and I do attribute the improvement to treatment. I work full time (though currently on leave for a non-Lyme issue) and many of the neuro symptoms mostly to fully resolved. My biggest ongoing issue is fatigue. It can come out of nowhere and still be very debilitating. In fact, somehow my fatigue is no better and may even be worse than it was earlier. I'm not certain what to think of it being my primary ongoing issue. I am under the care of an LLMD right now who wants me on a combo of 3 antibiotics but I'm not feeling up to that and so right now I'm not on anything.
It is a long and confusing road to be sure. My original LLMD (I moved) always said that Bart was my biggest issue (and my new LLMD agrees with that) and he also said that I was slower to recover than he would expect, so hopefully I'm on the long end of required treatment and not typical!
I can totally understand your frustration. That is a bummer about all the tests and all negative. But it is true, that Lyme, Babs, and Bart can all dodge the tests (esp. Babs!). (Note: Even the CDC acknowledges that patients with Babesia often test false negative. A low level of infection can make a person really sick. The LymeMD says that Clongen lab will do up to 300 smears to find Babesia, more than most labs. I don't know how many IGeneX does.) Did your IGeneX WB show ANY Lyme specific bands?
The fact that you feel better on Mepron and worse off it is indicative of a parasitic infection. Not to milk the testing cow again, but have you been tested for mycoplasma or chlamidya pneumoniae? Either of these can also interfere with Lyme treatment and delay recovery. The CD57 should be helpful.
My thought is that if you've had Lyme for several years, 4 months isn't all that long for treatment. I improved a lot less than I expected in 4 months, but then when I went off abx, I was able to tell how much of my run down feeling was from underperforming kidneys. I could also tell what was still Lyme, especially the symptoms that started to get worse off the meds.
I heard a story of a patient who didn't improve after 6 months of Rocephin. He switched to Bicillin shots and started getting better. But there are others who don't respond to Bicillin at all, and show significant improvement with Rocephin. Perhaps you are one of those whose Lyme just isn't giving in to the meds you're on. Maybe it's time to change it up before you stop. There are other combinations that are known to be effective.
The fact that you feel better on Mepron and worse off it is indicative of a parasitic infection. Not to milk the testing cow again, but have you been tested for mycoplasma or chlamidya pneumoniae? Either of these can also interfere with Lyme treatment and delay recovery. The CD57 should be helpful.
My thought is that if you've had Lyme for several years, 4 months isn't all that long for treatment. I improved a lot less than I expected in 4 months, but then when I went off abx, I was able to tell how much of my run down feeling was from underperforming kidneys. I could also tell what was still Lyme, especially the symptoms that started to get worse off the meds.
I heard a story of a patient who didn't improve after 6 months of Rocephin. He switched to Bicillin shots and started getting better. But there are others who don't respond to Bicillin at all, and show significant improvement with Rocephin. Perhaps you are one of those whose Lyme just isn't giving in to the meds you're on. Maybe it's time to change it up before you stop. There are other combinations that are known to be effective.
EGAD! So sorry to hear all this ... you really have been getting beat up every time you turnaround. >big hug<
I'm liking your doc for plowing ahead based on symptoms, but you are entitled to a sit-down, big-think meeting with the doc to give you the opportunity for input and venting about where things are, and to create a strategy for going forward. At this point, I'd insist on it, not just one of those 15 minutes in-and-out appointments. Big Think time.
I have been going through a much less consequential situation lately with similar problems ... with my dentist, of all people. Nice dentist, but totally uncommunicative about stuff until 'Uh Oh! Need Big Dental Work Here!!' I have been griping and asking about my teeth starting to go out of alignment for quite a long time, and when I got zero playback from the dentist, I took it mean things were all right and would not get worse.
Well, they got worse. Suddenly everything started moving forward even faster, teeth are out of alignment, and they are continuing to move at an alarming rate, and they ache like crazy. I am SO peeved.
So I hear you, and I understand your frustration. Sometimes it's the unpredictability of the illness/condition, sometimes it's the idiot in the white coat who missed class the day they learned for a half hour about communicating with patients.
I am keen on getting a higher-level conversation with this idiot dentist of mine, and short of that am finding a new dentist. Enough already.
Your doc sounds pretty good compared to my dentist, but flagging for your doc that you want a high-level strategy session and not just a check-in visit may help. I don't think a lot of medical people are good at that level of communication, but all the more reason to press them to do it. Sometimes I feel like a dog at the vet: the vet's gonna do what s/he wants, and nobody's asking what the dog wants.
WE are the patients, dagnabbit, and we're getting impatient!
I'm liking your doc for plowing ahead based on symptoms, but you are entitled to a sit-down, big-think meeting with the doc to give you the opportunity for input and venting about where things are, and to create a strategy for going forward. At this point, I'd insist on it, not just one of those 15 minutes in-and-out appointments. Big Think time.
I have been going through a much less consequential situation lately with similar problems ... with my dentist, of all people. Nice dentist, but totally uncommunicative about stuff until 'Uh Oh! Need Big Dental Work Here!!' I have been griping and asking about my teeth starting to go out of alignment for quite a long time, and when I got zero playback from the dentist, I took it mean things were all right and would not get worse.
Well, they got worse. Suddenly everything started moving forward even faster, teeth are out of alignment, and they are continuing to move at an alarming rate, and they ache like crazy. I am SO peeved.
So I hear you, and I understand your frustration. Sometimes it's the unpredictability of the illness/condition, sometimes it's the idiot in the white coat who missed class the day they learned for a half hour about communicating with patients.
I am keen on getting a higher-level conversation with this idiot dentist of mine, and short of that am finding a new dentist. Enough already.
Your doc sounds pretty good compared to my dentist, but flagging for your doc that you want a high-level strategy session and not just a check-in visit may help. I don't think a lot of medical people are good at that level of communication, but all the more reason to press them to do it. Sometimes I feel like a dog at the vet: the vet's gonna do what s/he wants, and nobody's asking what the dog wants.
WE are the patients, dagnabbit, and we're getting impatient!
Ha, so here's the thing--I begged for a Lyme test 5-6 years ago when I was having all the palps etc and the primary care physician ordered the general blood work through LabCorp. It came back positive--but I was told that "didn't mean anything" I needed the western blot blah blah blah--if I only knew then what I know now. After the WB I was deemed "negative." That said--I never SAW the WB test results, and Labcorp only keeps your records on file for three years--MEANWHILE--the PCP has moved to digital records and the original report from Labcorp is in the shredder somewhere. All I have is a tiny little handwritten note in my file that said--Lyme titer positive WB negative.
Now move to THIS round of testing with Igenex and LabCorp and Neuroscience (3 sep companies). ALL tests (nearly $2500 in total) from Igenex have been serologically NEGATIVE--that's PCR included TOTAL EXPENSIVE BUMMER ON MY PART. The Neuroscience test for protein markers specific to Lyme and a certain type of compliment (immune marker) was positive for probable Lyme, but the test is not widely used or proven beyond the company that does the test so --who knows on that one. ALL coinfection tests (labcorp AND Igenex) negative to date.
LLMD isn't perturbed, as we've all heard, all of this is not unheard of--but as the "sick one" it is immensely frustrating and generally an ongoing pergatory of "maybe--maybe not."
Now move to THIS round of testing with Igenex and LabCorp and Neuroscience (3 sep companies). ALL tests (nearly $2500 in total) from Igenex have been serologically NEGATIVE--that's PCR included TOTAL EXPENSIVE BUMMER ON MY PART. The Neuroscience test for protein markers specific to Lyme and a certain type of compliment (immune marker) was positive for probable Lyme, but the test is not widely used or proven beyond the company that does the test so --who knows on that one. ALL coinfection tests (labcorp AND Igenex) negative to date.
LLMD isn't perturbed, as we've all heard, all of this is not unheard of--but as the "sick one" it is immensely frustrating and generally an ongoing pergatory of "maybe--maybe not."
"Although I have had a positive ELISA for Lyme within the past 5 years, there is no current sign of the organism or its coinfectors other than symptomology--so here we are."
Dolfie, some people never get even THAT result on a test, so you're ahead of the game. Did your doc test you by PCR? It looks for bits of Lyme DNA in your blood instead of looking for your immune system's reaction to the Lyme bacteria -- that is, a direct test instead of an indirect test.
I think of it as the difference between actually seeing a burglar in your house (PCR) compared to noticing that some things are missing from the cupboards and wondering where they went (ELISA/Western blot).
Dolfie, some people never get even THAT result on a test, so you're ahead of the game. Did your doc test you by PCR? It looks for bits of Lyme DNA in your blood instead of looking for your immune system's reaction to the Lyme bacteria -- that is, a direct test instead of an indirect test.
I think of it as the difference between actually seeing a burglar in your house (PCR) compared to noticing that some things are missing from the cupboards and wondering where they went (ELISA/Western blot).
Dolfie, I can relate to your frustration but I have been told by several LLMD and medical professionals who are Lyme savy that often time they have to just go by your symptoms.
It took a friend of mine years to get a positive on her blood tests so your LLMD is correct in treating you based on your symptoms ..
I hope that helps in some way.
It took a friend of mine years to get a positive on her blood tests so your LLMD is correct in treating you based on your symptoms ..
I hope that helps in some way.
Thanks--just wondering. I actually have an appointment with LLMD in October, and that is when I will discuss this with her. I have a CD57 test scheduled in my next lab write-up, so...about 2 more weeks I guess. So, she's probably thinking along the same lines as me :-) in terms of the "what's next" question. I have to say--though I have been jumping the gun on her every move, it seems that this LLMD is really on target across the board and that I should really just trust her. It is just so hard, as you all know, when you don't feel good and you are just looking for results!!! It's the "instant gratification" world we live in I guess.
It would all be so much less complicated too if I would just get a test that confirmed or refuted a diagnosis! As it is, and as most of you know, I live and play in a super high Lyme risk zone, and I've had multiple ticks (known and I'm sure not known). I have never had a bull's eye, which we all know is not a requirement. All my symptoms are the weird "maybe" ones--heart palpitations starting approximately 10 years ago with no explanation except "maybe" hormone shifts after baby number one, transient joint pain--mostly wrist, hip and shoulder and all associated with repetitive motion, exercise and/or (haha) not being 20 anymore :-). Then I had bouts of unexplained optic migraines and increased heart palpitations six years ago that came and then went without explanation and then this year (since last July) I've had ALL OF THE ABOVE--along with fluxuating blood pressure and this really weird tippy/dizzy thing that one doctor said was Migraine associated vertigo. Everything I've experienced is on Burrascano's list(s) and I was at wits end, so off to LLMD.
All my tests show nadda. Although I have had a positive ELISA for Lyme within the past 5 years, there is no current sign of the organism or its coinfectors other than symptomology--so here we are.
This is such a frustrating disease--and the fact that I MAY or MAY NOT have it makes it no less frustrating--because there is no REAL way to tell!!!! This could all be hormonally mediated, somehow related to estrogen/progestin cycles (note the palps started soon after first child born, optic migraine and next bout with palps when I weaned second child, this mess now, no I'm not pregnant, but I am 38 and my periods are wacky--so maybe perimenopause, though no doctor seems to be following my logic). OR it could be Lyme/babs CAUSING hormone flux. OR maybe it is none of the above. *Sigh*
BTW--Jackie, I don't have Bart that I know of--my original post was saying that I tested Negative for Lyme, Babs and Bart--though the LLMD is pretty well convinced that I have or have a high likelihood of and therefore should be treated for Lyme and Babs.
I know what I want for Christmas this year :-).
Thanks all!!!
It would all be so much less complicated too if I would just get a test that confirmed or refuted a diagnosis! As it is, and as most of you know, I live and play in a super high Lyme risk zone, and I've had multiple ticks (known and I'm sure not known). I have never had a bull's eye, which we all know is not a requirement. All my symptoms are the weird "maybe" ones--heart palpitations starting approximately 10 years ago with no explanation except "maybe" hormone shifts after baby number one, transient joint pain--mostly wrist, hip and shoulder and all associated with repetitive motion, exercise and/or (haha) not being 20 anymore :-). Then I had bouts of unexplained optic migraines and increased heart palpitations six years ago that came and then went without explanation and then this year (since last July) I've had ALL OF THE ABOVE--along with fluxuating blood pressure and this really weird tippy/dizzy thing that one doctor said was Migraine associated vertigo. Everything I've experienced is on Burrascano's list(s) and I was at wits end, so off to LLMD.
All my tests show nadda. Although I have had a positive ELISA for Lyme within the past 5 years, there is no current sign of the organism or its coinfectors other than symptomology--so here we are.
This is such a frustrating disease--and the fact that I MAY or MAY NOT have it makes it no less frustrating--because there is no REAL way to tell!!!! This could all be hormonally mediated, somehow related to estrogen/progestin cycles (note the palps started soon after first child born, optic migraine and next bout with palps when I weaned second child, this mess now, no I'm not pregnant, but I am 38 and my periods are wacky--so maybe perimenopause, though no doctor seems to be following my logic). OR it could be Lyme/babs CAUSING hormone flux. OR maybe it is none of the above. *Sigh*
BTW--Jackie, I don't have Bart that I know of--my original post was saying that I tested Negative for Lyme, Babs and Bart--though the LLMD is pretty well convinced that I have or have a high likelihood of and therefore should be treated for Lyme and Babs.
I know what I want for Christmas this year :-).
Thanks all!!!
My doc uses Infectolab to test activity levels before taking off abx. It shows how active the infection is. If the ELISPOT antibody levels suggest no activity, and the immune system (mainly CD57) suggests the same, then he takes you off meds and retests after 3 months adn 6 months - which is when you can get the all clear.
ILADS 2010 stated very clearly - Burrascano and others - then you must NOT wean off antibiotics, as this only creates resistant strains. If you don't need abx any more, come straight off them.
ILADS 2010 stated very clearly - Burrascano and others - then you must NOT wean off antibiotics, as this only creates resistant strains. If you don't need abx any more, come straight off them.
Hey Dolphie -- Sorry to hear it hasn't been all clear sailing for you on the meds.
I was diagnosed with Lyme and babesia, but not bartonella. My doc was surprised that my test results came back so strongly positive, because as long as I had been feeling lousy, it would not have been unusual for my immune system to roll over and give up fighting.
The doc attacked the babs first, with Mepron (atovaquone) and Zithromax (azithromycin), for 4-5 months, as you have. (No amoxicillin, tho.)
At that point I felt better but still not great ... because Lyme had yet to be treated. Immediately after stopping the babesia treatment, I began 6 months of Biaxin (clarithromycin) and Omnicef (cefdinir).
As I recall, my doc said treatment was complete at that point, tho for other reasons I wasn't feeling well -- I had gotten a systemic yeast infection from Florastor supplements, and it took quite a while to beat that back, so there was no 'ah ha! I'm well!' moment for me.
==>> Here's the biggest difference between your situation and mine, I think: I didn't have bartonella. That is such a different kind of bug that the more I read in people's comments here and elsewhere the more I realize that it is a particularly slippery customer. So it may be that it is bart that is still keeping you down: just as after my babesia treatment I still didn't feel good, it was because Lyme hadn't been treated yet. Maybe for you it's because the bart hasn't been treated yet.
What kind of probiotics are you taking? As mentioned above, I had problems with the ones I was on, will fill you in if you are on the same kind I was, but I'd be more inclined to think it's bartonella that is the issue.
Before stopping treatment, as much as you want to just toss the whole project away and ignore it, I would have a serious talk with the doc about the pros and cons of a 'drug holiday'. Maybe it would not harm the overall treatment plan, but maybe it could cause big problems. Maybe the doc could bless a break in treatment or let you 'go herbal' for a while if you were interested in trying that.
I can hear how tired you are, and it may seem like an endless road, but the better course may be to plow ahead -- it's a talk to have with your doc, who seems from the other treatment approaches he has taken to know what he's doing (but I'm not medically trained, so just guessing here from personal experience). At the same time, my doc was a pretty hardcore, full-speed-ahead kind of doc, and I don't know how he would have reacted if I had thrown a flag on the play and said I needed a time out.
It is a conversation to have with your doc, tho, and explain that you really feel you need a break and ask what the pros and cons are of doing so. Try it: the worst you will hear is chirping crickets from the doc.
I hope that helps (?) -- as little to offer as it is. Let us know what you decide to do about talking with the doc ... but I really would have that in-depth talk before going cold turkey off the meds.
Hugs to you -- J.
I was diagnosed with Lyme and babesia, but not bartonella. My doc was surprised that my test results came back so strongly positive, because as long as I had been feeling lousy, it would not have been unusual for my immune system to roll over and give up fighting.
The doc attacked the babs first, with Mepron (atovaquone) and Zithromax (azithromycin), for 4-5 months, as you have. (No amoxicillin, tho.)
At that point I felt better but still not great ... because Lyme had yet to be treated. Immediately after stopping the babesia treatment, I began 6 months of Biaxin (clarithromycin) and Omnicef (cefdinir).
As I recall, my doc said treatment was complete at that point, tho for other reasons I wasn't feeling well -- I had gotten a systemic yeast infection from Florastor supplements, and it took quite a while to beat that back, so there was no 'ah ha! I'm well!' moment for me.
==>> Here's the biggest difference between your situation and mine, I think: I didn't have bartonella. That is such a different kind of bug that the more I read in people's comments here and elsewhere the more I realize that it is a particularly slippery customer. So it may be that it is bart that is still keeping you down: just as after my babesia treatment I still didn't feel good, it was because Lyme hadn't been treated yet. Maybe for you it's because the bart hasn't been treated yet.
What kind of probiotics are you taking? As mentioned above, I had problems with the ones I was on, will fill you in if you are on the same kind I was, but I'd be more inclined to think it's bartonella that is the issue.
Before stopping treatment, as much as you want to just toss the whole project away and ignore it, I would have a serious talk with the doc about the pros and cons of a 'drug holiday'. Maybe it would not harm the overall treatment plan, but maybe it could cause big problems. Maybe the doc could bless a break in treatment or let you 'go herbal' for a while if you were interested in trying that.
I can hear how tired you are, and it may seem like an endless road, but the better course may be to plow ahead -- it's a talk to have with your doc, who seems from the other treatment approaches he has taken to know what he's doing (but I'm not medically trained, so just guessing here from personal experience). At the same time, my doc was a pretty hardcore, full-speed-ahead kind of doc, and I don't know how he would have reacted if I had thrown a flag on the play and said I needed a time out.
It is a conversation to have with your doc, tho, and explain that you really feel you need a break and ask what the pros and cons are of doing so. Try it: the worst you will hear is chirping crickets from the doc.
I hope that helps (?) -- as little to offer as it is. Let us know what you decide to do about talking with the doc ... but I really would have that in-depth talk before going cold turkey off the meds.
Hugs to you -- J.
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