Aa
Almost reached remission
Hi guys, i have been out of this forum for a while. I wanted to tell you that, for those of you who dont know me, i was diagnosed with lyme after 3 years of being in limbo and feeling horrible. So fAr i have been on doxy for a few months, then added metronidazole.... Then kept the metro, dropped doxy and switched to cefuroxime. Currently on metronidazole + cefuroxime + erythromycin. Since i started this combo this year (2014) i began feeling from 70% to 95% and symptoms were so incredibly mild to non existant that my doc said to stop the antibiotics... Unfortunately when he advised that, i have been feeling a few of the symptoms but very very mild and didnt attribute it to lyme disease... Suddenly a flare up appeared a month ago and im still on it...never got to stop the treatment. What i wanted to tell those of you with lyme that are feeling miserable is that there is hope, i have been feeling almost normal for almost 10 months. Now im going thru this flare, but hoperemission will come soon.
My question about those of you being treated... Is it uncommon to experience a bad flare up even though i have been feeling pretty good for almost 10 months? I am now thinking " id this a flare up or is it the bacteria that became resistant?" Hopefully it is a temporary flare up... I have enough personal data that i can say everytime i experience a flare, the symptoms start with burning eyes and light sensitivity...then comes a cascade of symptoms.
Opinions, questions and comments are welcome
My question about those of you being treated... Is it uncommon to experience a bad flare up even though i have been feeling pretty good for almost 10 months? I am now thinking " id this a flare up or is it the bacteria that became resistant?" Hopefully it is a temporary flare up... I have enough personal data that i can say everytime i experience a flare, the symptoms start with burning eyes and light sensitivity...then comes a cascade of symptoms.
Opinions, questions and comments are welcome
Hi Gaucho25,
Did you really go into remission now? Can i know how are u feeling now.
Did you really go into remission now? Can i know how are u feeling now.
Any of posters here taken antiparasitic drugs ...as an additional drug to abx..eg ivermectin...i thought many lyme pts said iver helped a lot
You say, "when i was getting ready to stop the medication BOOM!¡ i started feeling the relapse (in my case it starts with my eyes: photophobia, visual snow in dark places, burning eyes...then comes pain all over body, stinging, itching, twitches...)."
Yes, it is hard to say what causes these flare ups to happen. I have read in various places that sometimes it is a Herx reaction; sometimes it is a new infection (or re-infection) from another tick bite that went unnoticed (on the scalp, perhaps); sometimes the bacteria rally against you if your immune system is temporarily suppressed by another infection or event (like surgery, or even just a very stressful life experience like a car accident, a family problem, or family event like a wedding, etc.) And yes indeed, an audit could have that same effect. Car accident; audit: pretty much the same in some ways, eh? ;)
Perhaps there is another underlying infection that was not previously diagnosed, such as bartonella or ehrlichia etc., and stress on top of that could indeed cause problems.
About flare ups while on treatment: yes, it seems that it can happen in various ways, from what I have read.
-- Consider that not all tickborne infections are treated with the same meds, and so not every med is effective against all infections. Therefore a flare up of Infection A could be noticeable if the meds you are taking are effective only against Infection B, so what feels like a relapse may be a new infection that needs different meds). Ticks are not stupid: they know a good blood meal when they taste one, especially if they have visited the 'restaurant' before.
-- When your symptoms suddenly flared up again as you were about to discontinue medication (on the assumption that the infection was gone), the renewed symptoms could have been from a new infection (either a new infection as the same one just treated, or a new and different one), thus starting the cycle anew.
-- Stress indeed could trigger a relapse, because your immune system is suppressed by stress and could allow the infection to rise up again.
And so on and so on .... Given the many different infections that are susceptible only to some meds, and given the various life-stressors we experience while ill, many combinations of causes and effects are possible, which is why the MDs may change medications.
As to flare ups while on treatment, that could be referring to a Herxheimer reaction ('Herx' for short): the death of bacteria due to the effects of treatment can cause the toxins and irritating substances in the bacteria to be dispersed in the body, causing symptoms to worsen, usually only for a while.
Bottom line: there are many variables in each person's immune system and due to which infections are present. It takes a careful and experienced MD to sort out what may be happening and how to approach it all effectively and in the right order with the right meds, and even the meds can cause what seem like flare ups but are the death throes of the bacteria, releasing toxins into the body. Thus none of what you experienced is out of the question, to my understanding. Then put the audit stress on top of it all, and that is just one more thing to cause problems!
Yes, I am symptom free and have been off meds for Lyme and babesiosis for at least five or six years now ... no relapses at all. It took at least a year (perhaps two years) after completing treatment to rebuild my stamina and strength, both mental and physical and even emotional.
Much of the difficulty encountered in Lyme and the other infections seems to me the mixture of infections with a person's stress levels and unique endocrine and immune systems. There are so many variables that it is not odd that everyone is a bit different in the disease, diagnostic, and recovery process.
Lyme is like a card game, perhaps poker: there are many combinations residing in the deck of cards, and random chance will cause the cards to come up favorable or unfavorable in each hand played. As the saying goes: 'Play it as it lays', dealing with the situation as it is today, and also as you progress toward recovery.
Stay nimble, and know that your docs are also still figuring all this out, so don't be afraid to ask and inquire and suggest if you think there are possibilities or approaches not yet given consideration.
Yes, it is hard to say what causes these flare ups to happen. I have read in various places that sometimes it is a Herx reaction; sometimes it is a new infection (or re-infection) from another tick bite that went unnoticed (on the scalp, perhaps); sometimes the bacteria rally against you if your immune system is temporarily suppressed by another infection or event (like surgery, or even just a very stressful life experience like a car accident, a family problem, or family event like a wedding, etc.) And yes indeed, an audit could have that same effect. Car accident; audit: pretty much the same in some ways, eh? ;)
Perhaps there is another underlying infection that was not previously diagnosed, such as bartonella or ehrlichia etc., and stress on top of that could indeed cause problems.
About flare ups while on treatment: yes, it seems that it can happen in various ways, from what I have read.
-- Consider that not all tickborne infections are treated with the same meds, and so not every med is effective against all infections. Therefore a flare up of Infection A could be noticeable if the meds you are taking are effective only against Infection B, so what feels like a relapse may be a new infection that needs different meds). Ticks are not stupid: they know a good blood meal when they taste one, especially if they have visited the 'restaurant' before.
-- When your symptoms suddenly flared up again as you were about to discontinue medication (on the assumption that the infection was gone), the renewed symptoms could have been from a new infection (either a new infection as the same one just treated, or a new and different one), thus starting the cycle anew.
-- Stress indeed could trigger a relapse, because your immune system is suppressed by stress and could allow the infection to rise up again.
And so on and so on .... Given the many different infections that are susceptible only to some meds, and given the various life-stressors we experience while ill, many combinations of causes and effects are possible, which is why the MDs may change medications.
As to flare ups while on treatment, that could be referring to a Herxheimer reaction ('Herx' for short): the death of bacteria due to the effects of treatment can cause the toxins and irritating substances in the bacteria to be dispersed in the body, causing symptoms to worsen, usually only for a while.
Bottom line: there are many variables in each person's immune system and due to which infections are present. It takes a careful and experienced MD to sort out what may be happening and how to approach it all effectively and in the right order with the right meds, and even the meds can cause what seem like flare ups but are the death throes of the bacteria, releasing toxins into the body. Thus none of what you experienced is out of the question, to my understanding. Then put the audit stress on top of it all, and that is just one more thing to cause problems!
Yes, I am symptom free and have been off meds for Lyme and babesiosis for at least five or six years now ... no relapses at all. It took at least a year (perhaps two years) after completing treatment to rebuild my stamina and strength, both mental and physical and even emotional.
Much of the difficulty encountered in Lyme and the other infections seems to me the mixture of infections with a person's stress levels and unique endocrine and immune systems. There are so many variables that it is not odd that everyone is a bit different in the disease, diagnostic, and recovery process.
Lyme is like a card game, perhaps poker: there are many combinations residing in the deck of cards, and random chance will cause the cards to come up favorable or unfavorable in each hand played. As the saying goes: 'Play it as it lays', dealing with the situation as it is today, and also as you progress toward recovery.
Stay nimble, and know that your docs are also still figuring all this out, so don't be afraid to ask and inquire and suggest if you think there are possibilities or approaches not yet given consideration.
Hi Jackie! Thanks for your advice. My LLMD has a good reputation, even lyme patients recommend him. I will talk to him about the possibility of changing meds... I was feeling so incredibly well that he even said " keep taking this meds for 2 months after you feel normal" and if you keep feeling well discontinue. Well, my symptoms this year were very mild to nonexistant... But when i was getting ready to stop the medication BOOM!¡ i started feeling the relapse ( in my cade it starts with my eyes: photophobia, visual snow in dark places, burning eyes...then comes pain all over body, stinging, itching, twitches...). So, i have read in manh places that everyone is different and you can still have a flare up even while on treatment. I believe one of my triggers is stress, i was preparing for an audit when symptoms appeared. Anyway, does this sound familiar to you?
You are symptom free? Not on treatment anymore?
You are symptom free? Not on treatment anymore?
I would push back and ask the doc to rethink the treatment. I was totally well in less than a year of antibiotics for Lyme and babesia, so your doc's approach seems rather lengthy. At a certain point, bacteria etc. will adapt to the meds they are exposed to, which is why killing them rather than disabling them is key.
I have recently seen others here mention that their doc was 'recommended' by ILADS, but just because your doc pays dues to ILADS doesn't mean s/he knows what s/he's doing. Lyme is still the wild wild west of medicine, which is why nonILADS docs look down on ILADS-type docs as a bunch of quacks ... The good news is that not all ILADS docs are of questionable ability and knowledge, but at the same time, some of the docs can be pretty far out there. You might want to consider a second opinion from another ILADS doc. Take copies of all your tests etc. for the new doc to review.
I have recently seen others here mention that their doc was 'recommended' by ILADS, but just because your doc pays dues to ILADS doesn't mean s/he knows what s/he's doing. Lyme is still the wild wild west of medicine, which is why nonILADS docs look down on ILADS-type docs as a bunch of quacks ... The good news is that not all ILADS docs are of questionable ability and knowledge, but at the same time, some of the docs can be pretty far out there. You might want to consider a second opinion from another ILADS doc. Take copies of all your tests etc. for the new doc to review.
I have been on doxy for about a year. At some point in the middle flagyl was added. then dropped doxy and added cefuroxime. Been on cefuroxime for a year and a half. Erythromycin was added 11 months ago. So right now Im on flagyl, erythro and cefuroxime. This was the best combo ever, started feel pretty darn well almost for this whole year. This is my first flare in the past 10 months. I have read that even on treatment flare ups may come up. The question is... how long will it last? when I was on other meds, symptoms diminished but never felt as good as this year with the combo of 3 antibiotics.
This doc has a well reputation, ILADS recommended him. He wrote a book and about 800 people have gone into remission under his practice, Im hoping he knows what he is doing. I am hoping to go into remission again SOON!
This doc has a well reputation, ILADS recommended him. He wrote a book and about 800 people have gone into remission under his practice, Im hoping he knows what he is doing. I am hoping to go into remission again SOON!
How long have you been on that treatment. We typically treat with a particular medication until we hit a plateau, and then we switch. Erythromycin is not used very frequently for Bartonella. Not sure how effective it is. Keep in mind that there are a lot of coinfections out there. Many of them treated with the same type meds, but not always. And as I'm sure you know, testing is less than perfect.
My doc tested for all coinfections.. even though none came up, he treated me for bartonella due to the symptoms. He used erythromycin for that. I never got off the treatment, wonder why I am having the symptoms again after almost a year of feeling really well.
Ditto what mojogal says. Also, going on and off antibiotics gives the bacteria the chance to become resistant to the medication, and sometimes there are no good alternative meds -- meaning, you were already on them. Because the 'standard' approach to infections other than Lyme is a relatively short course of antibiotics, some docs (even some who consider themselves Lyme specialists) may not understand that Lyme needs a longer treatment period than other bacterial infections.
My only concern would be to know if you were tested for or did your LLMD suspect a co-infection? Those require different ABX and could be some of your symptoms that come back.
I started my antibiotic cocktail the January 2013. I slowly began to start feeling better around November 2013 and stopped taking them for a week or so. Boom, all the symptoms came back, so went back on it. Had another remission around February and went off the antibiotics and the same thing happened, but it took longer, and when it came back, it wasn't as severe. Last March I started feeling better - little arthritis pain and reduced swelling and went off again. So far, I am improving every day. I remember thinking in June how good I felt, but it was nothing compared to how I feel today. Clear mind, no joint pain (my two worst symptoms). I tested negative for any co infections. YES THERE IS HOPE FOR ALL OF YOU!!! My LLMD was hopeful when I saw him in May, and asked that I send him a Christmas card if I still felt well. You'd better bet he will get a special card and a huge thank you for giving me my life back. My only complaint now is that at age 65, it is taking a long time to get my strength back, but that is improving daily.
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