Aa
Why?
Why do some people get an initial round of Doxy and live symptom free for 20 years, and others (like myself) have Lyme symptoms return after a year or two?
The only two people I personally know who have had Lyme both had serious medical issues before any abx treatment. One was bit and almost immediately spent 4 days in the hospital with Meningitis, the other had joints so crippled he needed help to put his socks on. Both fully recovered.
I have been very fortunate as the only real symptoms have been fatigue and occasional joint discomfort in one shoulder and one knee. After nearly two years since the end of my first blast of Doxy I decided maybe the slight discoloration on my hip where the original bullseye bite was located, plus increasing levels of fatigue were worthy of another blood test. Amazingly, except for a small intensity difference on one band, identical multiple bands were positive nearly two years later!
Now I'm on a month's worth of Ceftin and have located a well known (and published) LLMD in Maryland (one state away) to where I will instantly contact if the next Western Blot comes back positive. Needless to say, I'm done educating my current Doc who reads and believes the information I bring him, has had other Lyme patients, but is certainly not Lyme literate.
Reading this forum and others, one can get the impression that Lyme is with you for life, with terrible consequences for all. However, my two friends never have been treated again in 20 years and are very healthy, and I have been blessed not to (yet?) have the debilitating and long-term symptoms so common to others. Why??
The only two people I personally know who have had Lyme both had serious medical issues before any abx treatment. One was bit and almost immediately spent 4 days in the hospital with Meningitis, the other had joints so crippled he needed help to put his socks on. Both fully recovered.
I have been very fortunate as the only real symptoms have been fatigue and occasional joint discomfort in one shoulder and one knee. After nearly two years since the end of my first blast of Doxy I decided maybe the slight discoloration on my hip where the original bullseye bite was located, plus increasing levels of fatigue were worthy of another blood test. Amazingly, except for a small intensity difference on one band, identical multiple bands were positive nearly two years later!
Now I'm on a month's worth of Ceftin and have located a well known (and published) LLMD in Maryland (one state away) to where I will instantly contact if the next Western Blot comes back positive. Needless to say, I'm done educating my current Doc who reads and believes the information I bring him, has had other Lyme patients, but is certainly not Lyme literate.
Reading this forum and others, one can get the impression that Lyme is with you for life, with terrible consequences for all. However, my two friends never have been treated again in 20 years and are very healthy, and I have been blessed not to (yet?) have the debilitating and long-term symptoms so common to others. Why??
Glad you took my rant well ... after I sent it, I thought uh-oh, maybe I overdid it. Sometimes people who arrive here are totally beat down and feeling so lousy that it's like kicking kittens to be even the slightest bit critical. You sound very strong, tho, and your immune system is serving you well. Let's keep it that way!!
In your defense, besides denial being a wonderful place to live (I am there often myself), the way so-called mainstream medicine pooh-poohs Lyme as not much more than like a case of the flu makes it too easy to take Lyme lightly ... because none of us realllllly wants to have Lyme, after all.
But seriously, when you're still feeling good is the time to get fully diagnosed and treated. I know someone who resisted Lyme treatment because (and I quote): "I feel fine!" It was only after treatment was done (for babesia and Lyme) that the tune changed: "Gee, I didn't realize how lousy I had been feeling -- till after treatment was done and I was rid of Lyme."
Keep us posted! We love giving the bugz a beatdown.
In your defense, besides denial being a wonderful place to live (I am there often myself), the way so-called mainstream medicine pooh-poohs Lyme as not much more than like a case of the flu makes it too easy to take Lyme lightly ... because none of us realllllly wants to have Lyme, after all.
But seriously, when you're still feeling good is the time to get fully diagnosed and treated. I know someone who resisted Lyme treatment because (and I quote): "I feel fine!" It was only after treatment was done (for babesia and Lyme) that the tune changed: "Gee, I didn't realize how lousy I had been feeling -- till after treatment was done and I was rid of Lyme."
Keep us posted! We love giving the bugz a beatdown.
Jackie thank you for your excellent response. I will be contacting a real Lyme doc. As a certified thickhead, I need an occasional reality check and you have supplied it!
"Why do some people get an initial round of Doxy and live symptom free for 20 years, and others (like myself) have Lyme symptoms return after a year or two?"
If doxy is given almost immediately after getting infected, it can wipe out the Lyme bacteria. At some point, however, if doxy was not given quickly, the Lyme bacteria create slimy shields in the body, called 'biofilms', where the immune system cannot detect or destroy the bacteria. Many of us never see the tick or get a rash, and so never got the chance to take doxy early on when it is effective. There are other meds that can be taken, but it takes a doc to oversee that and use other meds that pierce the biofilms.
.
"The only two people I personally know who have had Lyme both had serious medical issues before any abx treatment. One was bit and almost immediately spent 4 days in the hospital with Meningitis, the other had joints so crippled he needed help to put his socks on. Both fully recovered."
That's good, and it sounds like they didn't know they had been bitten, and the Lyme bacteria moved in and set up housekeeping, so early doxy treatment was not a viable course of action.
"I have been very fortunate as the only real symptoms have been fatigue and occasional joint discomfort in one shoulder and one knee."
Your immune system may simply be very strong and able to keep the Lyme at bay, but that you are having any symptoms at all says that you might well have a disseminated (widespread) Lyme infection. I would see a Lyme doc and get treated rather than wait to get worse. Your immune system may falter at some point, for example, if you have surgery or some other stressor that weakens your immune system so that you can't afford to be fighting Lyme and whatever else is afflicting you. It becomes a two-front war, but with limited troops.
"After nearly two years since the end of my first blast of Doxy I decided maybe the slight discoloration on my hip where the original bullseye bite was located, plus increasing levels of fatigue were worthy of another blood test. Amazingly, except for a small intensity difference on one band, identical multiple bands were positive nearly two years later!"
Then I'd guess you probably still have Lyme but have been very lucky that your immune system is so hardy.
"Now I'm on a month's worth of Ceftin and have located a well known (and published) LLMD in Maryland (one state away) to where I will instantly contact if the next Western Blot comes back positive."
Why are you waiting? I would go asap. Lyme doesn't just go away.
"Needless to say, I'm done educating my current Doc who reads and believes the information I bring him, has had other Lyme patients, but is certainly not Lyme literate."
All the more reason to get to a real Lyme doc -- your possible infection(s) have had a long time to burrow in. Think termites in a woodframe house.
"Reading this forum and others, one can get the impression that Lyme is with you for life, with terrible consequences for all."
Only if you're not fully treated.
"However, my two friends never have been treated again in 20 years and are very healthy, and I have been blessed not to (yet?) have the debilitating and long-term symptoms so common to others. Why??"
Because their immune system is strong and keeping the infection under wraps. At some point, if another illness comes along, it may give the Lyme bacteria the opportunity they need to take over.
Don't wait till you have 'debilitating and long-term symptoms.' Treatment is not like being shipped off to Mars for a decade.
Lyme bacteria are in the same family as those that cause syphilis. Syphilitic dementia is nothing to wait around for. And, interestingly, there is some thought in the medical community that the sudden epidemic of Alzheimers (compared to our grandparents' generation) is really neuro-Lyme.
I would not continue to rely on luck and a healthy immune system: why not get treated? I don't anticipate getting in a car crash, but I wear a seatbelt.
If doxy is given almost immediately after getting infected, it can wipe out the Lyme bacteria. At some point, however, if doxy was not given quickly, the Lyme bacteria create slimy shields in the body, called 'biofilms', where the immune system cannot detect or destroy the bacteria. Many of us never see the tick or get a rash, and so never got the chance to take doxy early on when it is effective. There are other meds that can be taken, but it takes a doc to oversee that and use other meds that pierce the biofilms.
.
"The only two people I personally know who have had Lyme both had serious medical issues before any abx treatment. One was bit and almost immediately spent 4 days in the hospital with Meningitis, the other had joints so crippled he needed help to put his socks on. Both fully recovered."
That's good, and it sounds like they didn't know they had been bitten, and the Lyme bacteria moved in and set up housekeeping, so early doxy treatment was not a viable course of action.
"I have been very fortunate as the only real symptoms have been fatigue and occasional joint discomfort in one shoulder and one knee."
Your immune system may simply be very strong and able to keep the Lyme at bay, but that you are having any symptoms at all says that you might well have a disseminated (widespread) Lyme infection. I would see a Lyme doc and get treated rather than wait to get worse. Your immune system may falter at some point, for example, if you have surgery or some other stressor that weakens your immune system so that you can't afford to be fighting Lyme and whatever else is afflicting you. It becomes a two-front war, but with limited troops.
"After nearly two years since the end of my first blast of Doxy I decided maybe the slight discoloration on my hip where the original bullseye bite was located, plus increasing levels of fatigue were worthy of another blood test. Amazingly, except for a small intensity difference on one band, identical multiple bands were positive nearly two years later!"
Then I'd guess you probably still have Lyme but have been very lucky that your immune system is so hardy.
"Now I'm on a month's worth of Ceftin and have located a well known (and published) LLMD in Maryland (one state away) to where I will instantly contact if the next Western Blot comes back positive."
Why are you waiting? I would go asap. Lyme doesn't just go away.
"Needless to say, I'm done educating my current Doc who reads and believes the information I bring him, has had other Lyme patients, but is certainly not Lyme literate."
All the more reason to get to a real Lyme doc -- your possible infection(s) have had a long time to burrow in. Think termites in a woodframe house.
"Reading this forum and others, one can get the impression that Lyme is with you for life, with terrible consequences for all."
Only if you're not fully treated.
"However, my two friends never have been treated again in 20 years and are very healthy, and I have been blessed not to (yet?) have the debilitating and long-term symptoms so common to others. Why??"
Because their immune system is strong and keeping the infection under wraps. At some point, if another illness comes along, it may give the Lyme bacteria the opportunity they need to take over.
Don't wait till you have 'debilitating and long-term symptoms.' Treatment is not like being shipped off to Mars for a decade.
Lyme bacteria are in the same family as those that cause syphilis. Syphilitic dementia is nothing to wait around for. And, interestingly, there is some thought in the medical community that the sudden epidemic of Alzheimers (compared to our grandparents' generation) is really neuro-Lyme.
I would not continue to rely on luck and a healthy immune system: why not get treated? I don't anticipate getting in a car crash, but I wear a seatbelt.
I have come to believe that it depends on immediate treatment or not and which co-infections you may have. They are all so different and the bugs can move any place in your body and affect different organs etc.
That is also the reason there is not one protocol that fits everyone. It is very frustrating. I have mentioned this before but my ex husband is a golf course superintendent. He would get bit often but after a bite he would immediately go to a doctor and get 30 days of Doxy. So far he has not gotten Lyme.
That is also the reason there is not one protocol that fits everyone. It is very frustrating. I have mentioned this before but my ex husband is a golf course superintendent. He would get bit often but after a bite he would immediately go to a doctor and get 30 days of Doxy. So far he has not gotten Lyme.
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