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Is it at all possible for chronic Lyme to be cured?
Some people claim that they are "cured" of chronic Lyme, while others claim that it just goes into remission and you cannot be cured from chronic Lyme. I understand treatment can be lengthy and difficult but if treatment is done properly, CAN it be cured?
Thanks everyone for continuing to share your experiences! It helps a lot!
I think I need to lower my expectations. I'd just read how some people are doing so great after treatment and I'd start getting excited. Then I'd start finding others that weren't so fortunate and continue to have lingering issues. So yeah, I guess it probably varies from person to person.
I've always been so healthy. I can't remember ever having the flu or flu like symptoms. It's basically disabling fatigue, insomnia, bone and joint issues, tinnitus, chills, skin issues, breathlessness, orthostatic hypotension, some psychological components, brain fog, slowed processing, vision decline... ect. I can't remember ever having a fever in my entire adult life. My temp is much more likely to be low. So I could be sick as a dog and be far from feverish. So to a Dr, I wouldn't really be sick then! The main symptom in a majority of illness seems to be a fever.
I've ran across Chagas in my research too and I suppose that's always a possibility. I've seen those bugs that carry the disease, so I know there around here.
I took Keflex 500 mg tid for a few weeks. Then when I was finished with that one, I took Amoxicillin x 500 mg tid for about a month. And now Bactrim DS bid. I had no obvious herx with any of these antibiotics, maybe they're just not the ones I need. I got the first two from the dentist. I take a bunch of supplements and never experienced an obvious herx either.
This is obviously one complicated disease! Trying to figure out what co infections may be involved is aggravating. There’s the Lyme and whatever co and opportunistic infections and then the secondary issues that’s going to cause symptoms too, all mixed together in one. I feel like I'm being defeated. I seriously need to get on with treatment! I can't wait till October! What shall I do?
TBI??
Has anyone had the Lab Corp western blot or know anyone that has? Results?
I think I need to lower my expectations. I'd just read how some people are doing so great after treatment and I'd start getting excited. Then I'd start finding others that weren't so fortunate and continue to have lingering issues. So yeah, I guess it probably varies from person to person.
I've always been so healthy. I can't remember ever having the flu or flu like symptoms. It's basically disabling fatigue, insomnia, bone and joint issues, tinnitus, chills, skin issues, breathlessness, orthostatic hypotension, some psychological components, brain fog, slowed processing, vision decline... ect. I can't remember ever having a fever in my entire adult life. My temp is much more likely to be low. So I could be sick as a dog and be far from feverish. So to a Dr, I wouldn't really be sick then! The main symptom in a majority of illness seems to be a fever.
I've ran across Chagas in my research too and I suppose that's always a possibility. I've seen those bugs that carry the disease, so I know there around here.
I took Keflex 500 mg tid for a few weeks. Then when I was finished with that one, I took Amoxicillin x 500 mg tid for about a month. And now Bactrim DS bid. I had no obvious herx with any of these antibiotics, maybe they're just not the ones I need. I got the first two from the dentist. I take a bunch of supplements and never experienced an obvious herx either.
This is obviously one complicated disease! Trying to figure out what co infections may be involved is aggravating. There’s the Lyme and whatever co and opportunistic infections and then the secondary issues that’s going to cause symptoms too, all mixed together in one. I feel like I'm being defeated. I seriously need to get on with treatment! I can't wait till October! What shall I do?
TBI??
Has anyone had the Lab Corp western blot or know anyone that has? Results?
"Everyone is different"
Should I put that in capital letters? LOL
As counterpoint to the experience of Jackie and I'm sure many others---- I had/have every TBI known.
I was dx'd with Lyme, HGE, HME (now Human Granulocytic Anaplasmosis) at first.
Bartonella wasn't even 'known' then and certainly no test for tick-borne Bart. But when I did get tested for it---- I was way off the high end of positive.,
Babesia was barely known then and thought to be danger only to people with no spleen. (The test for it was called WA1) But I finally got a positive when Nick devised a test for B. duncani (which is supposed to be a West Coast variety but now is everywhere.)
I haven't been tested for RMSF but probably have it too. :(
I probably have Chagas also. More on that later in another thread.
And I probably have many many other TBI's --- those not looked for.
My personal history, as far as tick bites, is much murkier than Jackies. Living in an endemic county in CA and on a ranch with dogs, cats, horses etc and giving the dogs a long walk twice a day---- well just imagine.
I had at the very least 5 or 6 known tick bites every winter for almost 10 years. I can only guess at how many nymphs bit me and dropped off unnoticed.
But, hey---- since the CDC told me that a bulls-eye rash was what to look for----- I never worried because I never got one. And I continued to be fit and healthy even though I wasn't a spring chicken. I can only imagine that my immune system was doing it's job ----- until it couldn't. :(
Should I put that in capital letters? LOL
As counterpoint to the experience of Jackie and I'm sure many others---- I had/have every TBI known.
I was dx'd with Lyme, HGE, HME (now Human Granulocytic Anaplasmosis) at first.
Bartonella wasn't even 'known' then and certainly no test for tick-borne Bart. But when I did get tested for it---- I was way off the high end of positive.,
Babesia was barely known then and thought to be danger only to people with no spleen. (The test for it was called WA1) But I finally got a positive when Nick devised a test for B. duncani (which is supposed to be a West Coast variety but now is everywhere.)
I haven't been tested for RMSF but probably have it too. :(
I probably have Chagas also. More on that later in another thread.
And I probably have many many other TBI's --- those not looked for.
My personal history, as far as tick bites, is much murkier than Jackies. Living in an endemic county in CA and on a ranch with dogs, cats, horses etc and giving the dogs a long walk twice a day---- well just imagine.
I had at the very least 5 or 6 known tick bites every winter for almost 10 years. I can only guess at how many nymphs bit me and dropped off unnoticed.
But, hey---- since the CDC told me that a bulls-eye rash was what to look for----- I never worried because I never got one. And I continued to be fit and healthy even though I wasn't a spring chicken. I can only imagine that my immune system was doing it's job ----- until it couldn't. :(
Treatment was just under a year and a half, partly because I was 'lucky' to have only Lyme plus one other relatively easy-to-kill infection (babesia). The more infections, the more complex the situation and the longer the treatment.
The more co-infections there are, and if the co-infections are the more complex ones like bartonella, the more complicated the diagnosis and treatment. Lyme is complex too, but once I was clear of babesia, all focus could be put on Lyme.
The only rule of thumb is that there is no rule of thumb. Everyone is different, the different strains of these various illnesses all act differently at some level, everyone's immune system is different, the interaction among the infections confuses the issue, the tests aren't that accurate sometimes, blah blah blah. Many variables in motion.
Also, sometimes people find out they have one or more 'hidden' infections that couldn't be found until other infections were treated and out of the way. That prolongs the total treatment time.
My doc only does antibiotics, and there is no post-infection maintenance schedule for that: when the treatment is done, it's done. I continue to take vitamins and supplements just on general principles, which I didn't do before I had Lyme.
But everyone is different, that's for sure.
The more co-infections there are, and if the co-infections are the more complex ones like bartonella, the more complicated the diagnosis and treatment. Lyme is complex too, but once I was clear of babesia, all focus could be put on Lyme.
The only rule of thumb is that there is no rule of thumb. Everyone is different, the different strains of these various illnesses all act differently at some level, everyone's immune system is different, the interaction among the infections confuses the issue, the tests aren't that accurate sometimes, blah blah blah. Many variables in motion.
Also, sometimes people find out they have one or more 'hidden' infections that couldn't be found until other infections were treated and out of the way. That prolongs the total treatment time.
My doc only does antibiotics, and there is no post-infection maintenance schedule for that: when the treatment is done, it's done. I continue to take vitamins and supplements just on general principles, which I didn't do before I had Lyme.
But everyone is different, that's for sure.
Glad to hear you feel you are cured, Jackie!
How long were you in treatment for?
Do you take or do anything now for 'maintenance'?
How long were you in treatment for?
Do you take or do anything now for 'maintenance'?
I think I was bitten twice --
-- the first time in summer 2004: immediately after a trip back East (from Virginia to Massachusetts), wandering around a lot of grassy, woodsy places, I felt mildly lousy: somewhat fatigued, some heartbeat irregularities, like I was coming down with something, but the feeling never went away. Never saw a tick or a rash.
-- the second time in summer 2006: another trip back East, similar grassy/woodsy wandering, but this time the symptoms were worse: like having the flu, fatigued, headache, irritable. Over the next few weeks, turned into severe headaches, overall muscle pain, confusion, deep fatigue, visual disturbances (I don't now remember what ... this is taken from my notes back then ... since I couldn't remember anything, I kept daily notes of how I felt so I could sum it up to tell the next doc), ringing ears, memory issues.
In the fall of 2006, I ended up in the ER twice with heart irregularities, and began my odyssey over the next year through 20 docs, including an ID doc, 2 GPs, 3 endocrinologists, a gastroenterologist, and ear/nose/throat doc, an ophthalmologist, etc. You name it, I saw it.
One of those docs finally, in desperation, ran the basic Lyme test, which came back mildly positive, but the doc blew it off because I didn't 'look sick enough'. I knew however that Lyme is nothing to mess with (my college roommate struggled with it for years), so I took the test result to an LLMD, and in April 2007, I was diagnosed with Lyme and babesia.
From likely first infection to diagnosis was about 3 years.
-- the first time in summer 2004: immediately after a trip back East (from Virginia to Massachusetts), wandering around a lot of grassy, woodsy places, I felt mildly lousy: somewhat fatigued, some heartbeat irregularities, like I was coming down with something, but the feeling never went away. Never saw a tick or a rash.
-- the second time in summer 2006: another trip back East, similar grassy/woodsy wandering, but this time the symptoms were worse: like having the flu, fatigued, headache, irritable. Over the next few weeks, turned into severe headaches, overall muscle pain, confusion, deep fatigue, visual disturbances (I don't now remember what ... this is taken from my notes back then ... since I couldn't remember anything, I kept daily notes of how I felt so I could sum it up to tell the next doc), ringing ears, memory issues.
In the fall of 2006, I ended up in the ER twice with heart irregularities, and began my odyssey over the next year through 20 docs, including an ID doc, 2 GPs, 3 endocrinologists, a gastroenterologist, and ear/nose/throat doc, an ophthalmologist, etc. You name it, I saw it.
One of those docs finally, in desperation, ran the basic Lyme test, which came back mildly positive, but the doc blew it off because I didn't 'look sick enough'. I knew however that Lyme is nothing to mess with (my college roommate struggled with it for years), so I took the test result to an LLMD, and in April 2007, I was diagnosed with Lyme and babesia.
From likely first infection to diagnosis was about 3 years.
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