I just saw my doc today, who wants me to drop my antibiotic for a month to see how I react.
Curious what others here think of his logic so far:
Past history:
Symptoms started around 10 years ago, primary at the time thought I may have Lyme, symptoms primarily consisted of fatigue and neck pain, (several bands on standard WB positive), sent to Rheumo, who used Elisa, stated I definitely didn't have Lyme. Various symptoms worsened over the years, including coming down with cardiomyopathy.
Around a year ago I had my primary retest several things, and I tested positive for Ehliciosis, albeit a low level IGG, so it represented past exposure.
New doc retested, and it came back positive for exposure (IGG) to Spotted fever, Typhus and my Igenex IGM came back positive (bands 31+, 41+, 39 IND). IGG I think was just positive on 41, with 31 & 39 IND.
Recent tests show positive Bartonella (and I have symptoms of it too).
I've had very minimal improvement. No real changes since then.
Minor herx from Doxy, big problems from Bactrim, no herx from Omnicef. Years ago I was given Levaquin (bad reaction after 2 days) and Zithromax (took full week's dosage, but felt miserable on it).
The pattern I see is that anything that hit Bart, caused me a herx. So... I'm wondering, why is my doctor waiting another month to treat my Bartonella? I've had Bart symptoms for like 4 months now... why does he want to treat it last?
The reasoning he gave for dropping my antibiotic, is that he wants to see if my symptoms get worse while taking nothing, and if so, he then will know Lyme needs more antibiotics. But since my symptoms vary a lot already, I don't know how we can determine anything for certain anyway. For all I know I'll feel worse simply from untreated Bart. I'm not even sure he really treated Lyme fully.... it wasn't exactly a large dose of antibiotics he gave me so far. Each antibiotic was mono therapy.
Symptoms wise, I have like a dozen or so, pretty much the normal Lyme things, or Bart symptoms. I see no point in revisiting other causes, when I've tested positive for everything tick related so far, besides Babesia (and I may even have some symptoms of that).
So... wondering if he's being too conservative, or if I'm just being impatient with him.
He does state I have Lyme and Bart, but the weirdness happens when he acts like treating Bart is optional (he's a little afraid of tendon problems). I'd happily trade a torn tendon if all of my other symptoms permanently resolved. I guess his thinking is that perhaps antibiotics won't help me.
[ 01-26-2010, 04:16 AM: Message edited by: Anna Lee ]
Posted by street129 (Member # 23472) on :
time to move on...
Posted by sutherngrl (Member # 16270) on :
I actually agree with conservative treatment. I have seen it work in more than a few cases. I don't believe you have to pump exta antibiotics into your body just to have your liver left to deal with what you body can't absorb.
I think stopping antibiotics periodically can be good, due to the fact that antibiotics can make you feel bad, and sometimes it might be hard to determine how much you may have improved while taking them. I think you should discuss it with your doctor to see if this is what he has in mind.
If you don't trust your LLMD, then its time to get a new one.
Posted by TerryK (Member # 8552) on :
Borrelia is slow growing. My understanding is that if your symptoms come back immediately then it is likely a co-infection.
I think he may be wanting to know if you've made any progress on your current treatment. For example, stopping abx for a few weeks can allow toxins to clear out which may allow you to see some improvement.
My experience with this was pretty astounding. I had to stop abx for weeks because of elevated liver enzymes. During that time, the long standing pain in my arm magically went away and I regained full use of my arm after several years of limitations.
I have clinically diagnosed bart (negative tests, long red streaks on my side that went away with treatment) however I still have symptoms of bart after fairly aggressive treatment.
Based on my experience with bart, (I may have a different strain than you have) I would want it treated aggressively now rather than later when it may be even harder to get rid of.
I don't know what his plans are for you but I would have a very serious talk with him about your concerns.
Terry I'm not a doctor
Posted by unsure445 (Member # 15962) on :
I think the theory is let the symptoms and bugs come out and then hit them hard.
I wouldn't switch doctors. There is a myth to the madness.
In a few days you'll be happy to be taking a break most likely. Switching things up, changing meds, etc... is always unsettling.
Posted by sutherngrl (Member # 16270) on :
Unsure..... very well said!
Posted by LightAtTheEnd (Member # 24065) on :
My GP first gave me Ceftin for 3 months at a standard dose (probably too low for Lyme). I seemed to be making slow positive progress by the end of the 3 months.
I stopped it when I ran out, and within 2 days, all my initial Lyme symptoms were back full force. My theory is that some bacteria had become cysts and then converted back when I stopped the antibiotics.
I took some Buhner herbs for the next month until I could have my first LLMD appt. I also seemed to get gradually better during that month.
So I took a month break from abx but not on purpose.
My LLMD so far thinks I only have Lyme and no coinfections.
He then put me on doxy, and I had a bad herx starting on the third day, that lasted around a week, and then have returned to an average level a little worse than what I had achieved when I stopped the earlier antibiotics.
I guess stopping antibiotics for a month, in my case, demonstrated clearly that the Lyme was still there and I had not taken them long enough or at a high enough dose. And probably that there were cysts and I might eventually need to add a cyst-buster.
At the time, I still wasn't sure if I had Lyme, and if I had it, I mistakenly thought the medicine was supposed to be curing me in those first 3 months.
So the month break proved to me that I DID have Lyme, and that the first round of antibiotics was ineffective in getting rid of it.
Now that I already know that, I don't want to stop the doxy (or whatever else I'm given) that my LLMD has me on until I start feeling like I don't have any symptoms at all, which may be a while.
But I have read that pulsing--i.e., stopping antibiotics long enough to let the cysts convert back into spirochetes, and then using antispirochetal antibiotics to kill more of them--can be a good strategy.
Pam Weintraub in Cure Unknown describes getting better that way.
Talk to your doctor about his reasoning, and make sure you and he are on the same page regarding your treatment goals.
Posted by Lymetoo (Member # 743) on :
Lemon... Did I miss how long you've been on Lyme meds??
PS.. There are many more problems with quinolones than torn tendons. That stuff scares me! But... you gotta do what ya gotta do to get well.
Bart experts.. Can you get well on Bactrim or Zith? Does it have to be a quinolone ?
Posted by lymebytes (Member # 11830) on :
Hi,
Is there another LLMd that you can see? Get a second opinon if you can.
Not all LLMd's treat the same, but stopping treatment when you are obviously Bart and LD and I believe Ehrlichia positive as well (many LLMd's agree - IgG does not mean "past" it means "older" infection) is odd.
At this point treatment should be ongoing until you are symptom free.
See another LLMd if you can and hopefully get the treatment you need.
Take care.
Posted by Lemon-Lyme (Member # 19229) on :
Thanks for all of the replies.
I'm not planning on switching doctors at the moment, as he's the only ILADS doc in my area (and he takes insurance). But the fact he takes insurance is also probably why he's somewhat conservative. I'm poor right now... so options are limited.
Lymetoo: I was on Doxy for around 4 months, and 4 months (or maybe 5) for Omnicef. But two months of the Doxy was on low dose (200mg) when starting out, so I don't think that dosage hits Lyme a whole lot. So I'd say around 6-7 months total at 'Lyme-hitting' doses. Should I have noticed a major benefit within that time? According to my doc, I should have noticed something pretty noticeable... but at best, it was a minimal improvement, or probably a wash, as now my feet and legs hurt. So take away a couple of minor neurological issues, but add sore feet instead.
As for treaing Bart, I think my options are a quinolone, then rifampin (or derivative) + zith. The latter is my backup plan, due to rifampin's drug interaction problems. Bactrim would have been my optimal therapy, hitting Lyme, Bart and maybe even Babesia, but things went horribly wrong when I tried it. Fevers, headache, dizziness, fainted once (and hit my head hard), and finally a rash all over my body. Some of the rash was Lyme/Bart-like (spots on legs, back), while the rest was redness all over my body. Doc stated the rash wasn't good, meaning an allergic reaction or immune system over responding, so that one is out. Although for all I know at this point, Levaquin will cause me the same symptoms.
And yeah, the Ehrlichia is really a positive, but I just call it a past infection, as that is what my original non-LLMD called it. It could still cause problems if untreated, but I think the Doxy should have killed it and the rickettsia stuff (I hope). The thing I wonder about is if he hit Lyme hard enough. I can see if I was on several antibiotics, cyst buster, etc. and then he wanted to stop and re-evaluate -- but since I still have symptoms, I'm not sure if I was on enough to do much. Maybe? Again, not sure...
I think my main concern is my doctor's seemingly 'playing it by ear'... or as he stated, educated guesses. Each time I see him, he seems to say something different. For instance, right before Xmas he was willing to write me a script for Levaquin, but I wanted to wait until my liver results came back (and didn't want to ruin the holidays). Yet 4 weeks later, he now wants to hold off on treating Bart for another month. I just find it all peculiar. I'd rather he had a definite plan of attack, and just went with it.
Maybe it's possible I have primarily Bart, with mild Lyme?
Not sure... symptoms match pretty much all tick diseases, and even have shortness of breath (matching Babesia). Although no sweats, so not sure he'll even consider Babesia.
Posted by Lymetoo (Member # 743) on :
Wow.. doesn't sound like you are in good hands.. but you could stay with him awhile yet if you can't afford otherwise.
Lyme treatment can take years... so "not much improvement" in 6-7 mo doesn't mean much. Many of us feel horrible even one to two years into treatment.
If you're in NY, you likely have babesia. I never had much in the way of sweats, but had chills.
Posted by WildCondor (Member # 434) on :
Monotherapy rarely makes any sense....reason enough to move on.
Posted by sutherngrl (Member # 16270) on :
I have actually known ppl that have recovered doing mono-therapy and low dose therapy. Its not always about high dosing. There is a lot more to consider when treating LD.
Some believe that our tissues can only absorb so much of the antibiotic anyway, thus leaving the liver with much more to deal with than is actually neccessary.
Posted by Lemon-Lyme (Member # 19229) on :
I don't necessarily have a problem with my doc using monotherapy, but I wonder if I've been on either antibiotic long enough where I definitely should notice some benefit. I'm not so sure I should have, especially since it's possible Bart is causing some major symptoms that overlap.
It's weird, because one day he'll say it can take years for some people to recover, then next time he'll talk about reevaluating the causes of my symptoms, suggesting I go back to other specialists (neuro, etc), which I did before I even saw him. And that led nowhere and to me would be pointless.
I also was baffled when he said treating Bart was a decision I'd have to come to, acting like treating it at all was optional. To me, it's not really an option, as I can't see living with Bart symptoms being so healthy, and I'm sure it does some damage while active. Anyone out there ever have their doc diagnose Bart, and you actually test positive too, yet their doc then says maybe you shouldn't treat it? I guess he's just covering his bases, concerned I'll tear a tendon, and he's afraid of lawsuits or something?
Posted by Lymetoo (Member # 743) on :
I recovered by using mostly monotherapy. It works.
Forget going back to neuros .. they are clueless about lyme.
I don't know much about bart since I didn't have it... I would think he could be protecting himself. But there are other meds like Rifampin which don't cause tendon problems.
Posted by Hopeful2010 (Member # 22958) on :
I have 3 different doctors. I stick mainly with one. I like the checks and balances of having a doctor that is conservative and one that is aggresive.
I probably would be uncomfortable going off abx but there is reasoning behind this method. I believe Dr. J. does this to find out where people are at in their treatment.
I remember one doctor giving me a medicine and not saying one word about the side effects. My conservative doc said "that stuff will kill you." I told that to my most recent well known LLMD and he said "yeah, it will kill you! that's one less Lyme patient we'd have to deal with." I laughed. Maybe some people wouldn't find that funny.
My point is - I have learned that it is up to me on how aggresive I want to be. I have found sort of a middle ground that my body seems to appreciate. Listen to the doctors but also listen to your body.
Posted by Lemon-Lyme (Member # 19229) on :
Normally, for most other types of ailments, I'd go the multiple doctor route.
Unfortunately, due to lack of Lyme doctors about, and lack of money on my part, it's my current doc, and the other option is an even more conservative non-LLMD. I can't really 'shop around' for Lyme docs, or get many other opinions currently.
Hopefully he continues Lyme treatment, although in his mind the dropping of my antibiotic was to see if further Lyme treatment will help.
I'd like him to consider Babesia too... or at least figure out why I can't breathe very well.
And the weirdness is, when he mentioned seeing a neuro, or rheumo, etc. all over again, it's not to treat Lyme in any way. He's sort of saying the symptoms may not be Lyme or tick related, even though they match, he diagnosed, and I tested positive for them. I spent a year seeing two neurologists, and came out actually worse from seeing them (muscle needle test sort of caused permanent leg pain). I see no logic behind revisiting more useless doctors, when I have positive tests + symptoms of the tick diseases he supposedly treats.
Posted by sutherngrl (Member # 16270) on :
If you read the symptoms of Lyme and Bart, they too can cause breathing issues.
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by sutherngrl: If you read the symptoms of Lyme and Bart, they too can cause breathing issues.
Yeah, I thought so too originally. Although my doc says no, that it's primarily only Babesia that causes the breathing problem. So... I'm not sure. I was working with the theory if my breathing got better after fully treating Lyme/Bart, then one of them would be the cause. But as of now, I still breathe lousy.
Posted by sickpuppy (Member # 23846) on :
Here's an idea about the breathing: maybe the bodily stress conditions from the diseases you do have are effecting your breathing? Maybe part of the fight or flight thing? Not saying it's a psychological problem but caused by your body always being under attack.
Posted by Lemon-Lyme (Member # 19229) on :
It's possible. It could be because of being overly sickly, I simply breathe worse.
The breathing symptoms started several years ago, before most of my symptoms got bad. Preceding this I had some odd sweaty days, but not drenching night sweats. Also had some odd rashes.
And it feels mostly like chest tightness, not wheezing or asthma related. Although the asthma connection is a possibility too... just that asthma medication doesn't seem to help so much.
I find I sleep worse because I can't breathe so great, which can't be helping my immune system much. But for whatever reason, my doc doesn't seem to address the problem whenever I bring it up to him. I guess he's thinking it may be the multiple diseases sort of concept, like you mentioned, and it'll resolve if/when other symptoms do.
Posted by METALLlC BLUE (Member # 6628) on :
You live in NY, right? Which part? Far from New York City?
Posted by Lemon-Lyme (Member # 19229) on :
On Long Island, so the city is about an hour away... or maybe an hour and a half, by train, which is what I'd use to get to the city.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lemon-Lyme: I see no logic behind revisiting more useless doctors, when I have positive tests + symptoms of the tick diseases he supposedly treats. [/QB]
You're absolutely correct!
Posted by Lymeorsomething (Member # 16359) on :
I suspect that I have the same doc... I had made decent progress then he perplexingly wanted me to take a month off and boom...everything came home to roost...
I don't particularly like the idea either but it does act to confirm certain dx's.
As long as you get yourself back on something soon, that's key. You don't want to make the 'chetes and co too comfortable Posted by JR (Member # 16898) on :
Perhaps it has already been mentioned as I just skimmed the responses- but I thought the rule of thumb was to treat for two months past symptom relief?
Posted by METALLlC BLUE (Member # 6628) on :
Since youu live in the Epi-center of the world's Lyme Disease epidemic, there just happens to be a lot of Lyme Disease specialists around.
Your current guy sounds like he doesn't inspire confidence. I've learned over the years that you should never have to try to figure out what's going on in your doctor's head. They should be forthcoming with it, and very logical and systematic in "presenting" the ideas to you. Those ideas should be coherent and directional based on the past and based on what "might" be in the future. Randomness isn't helpful. There are usually a variety of paths.
If you're interested in learning what other doctors have to say, I can give you a list of NY, CT, or MA, or NJ etc.
Seeing another Lyme Disease specialist around the area may be helpful. You obviously would need to pick and choose and make the calls yourself to see who would be affordable or otherwise accessible to you.
One more additional note, treating co-infections isn't optional, it's critical. And using Monotherapies at the stage you're at, is very unlikely to produce the desired results (especially if co-infections are involved).
I spent 7 years working with an "LLMD" who treated Lyme Disease indefinitely with "Monotherapies." but he refused to acknowledge that I wasn't getting better, and that I had other co-infections. That's a long time to "trust" someone and to keep making excuses for the nagging gut feeling that something is missing and or being ignored.
He simply told me "You fall into that 10% that just don't get better, so maybe it's not Lyme."
I went and retested everything just to prove him wrong. In the end, I was right. I tested positive for a lot of things that for some odd reason he missed. Rocky Mountain Spotted Fever, Lyme Disease. I also have Babesia, and Bartonella, and a variety of other complicated opportunistic infections.
I also got a second opinion, but I didn't like that doctors arrangement either. She also treated Lyme long term, but was more fond of using the IV, but her therapies were still mono-therapies. I felt these would not address the issues. I felt like I was telling them what I felt needed to be done instead of them presenting me with a variety of options. That isn't the way it should work. You should walk in there feeling like the doctor is totally confident and in control of the process -- while at the same time giving you abundant opportunity to contribute your own ideas and to listen to you (and your gut feelings).
So I left his care and went to see Dr. H in NY.
Posted by sickpuppy (Member # 23846) on :
Hey Metallic, I'm not feeling totally confident about either of the 2 llmds i've seen. I have a list of people but would you be so kind as to PM me your list.
I'm taking note that you go to Dr H in NY. I assume you're happy there?
Posted by METALLlC BLUE (Member # 6628) on :
SP, E-mail me at [email protected] and tell me which states you want.
You can also give me reports on your current doctors if you wish.
I'm happy with the female PA, but I don't like working with the others. They aren't a good fit for me.
Posted by Lemon-Lyme (Member # 19229) on :
Metallic Blue: Thanks for the response. If you could PM with a list of doctors in NY, I'd be grateful. Or maybe NY + CT... although not sure any of them take insurance, which right now would be a problem for me. It's good to have a list regardless, if down the road I have the money to pay for a different doctor.
My current doc goes with the theory that some people, if they have had Lyme a long time, may not get 100% better and still have some symptoms. And that sounds logical to me. But they should have some improvement... and as of now, I really don't have any.
I've been off antibiotics for several days now, and not sure if it's coincidence, but it's been a crummy week. More neck pain, fatigue and I feel like I'm walking around with a mild virus all the time. And my breathing is worse, although I didn't expect that to be a worsening symptom. I think Omnicef just hits Lyme, not co-infections, so that is an odd symptom to get worse.
Posted by METALLlC BLUE (Member # 6628) on :
P.S. That sounds like Babesia.
Posted by Lemon-Lyme (Member # 19229) on :
Yeah, I've considered Babesia, but I am missing the drenching sweats, so my doc hasn't really considered treatment for it.
Anyone ever do a trial on Babesia drugs to get a response, as sort of as a test? Would a person notice a response (good or bad) within say, 4 weeks or so?
My doc may go for something like that, if I push for it.
Posted by Lymetoo (Member # 743) on :
My dr does trial runs of babesia meds all the time since the testing is so inaccurate. I think you would definitely notice something within a few weeks.. or less.
Forget about the drenching sweats.. isn't necessary to have.
Posted by METALLlC BLUE (Member # 6628) on :
I agree with LT. A trial of one month would be plenty to notice effects in my opinion. (If the med happened to be effective against the particular strain.)
Posted by IckyTicky (Member # 21466) on :
I don't know what to say... but I agree with conservative treatment as well.
I've gone from dying to 90% functional on mono-therapy alone.. two years.
Personally, I'd see what the month will do. It happens all the time for people anyways who have to stop due to yeast issues etc.
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