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Lyme concern
I started having leg pain in September and finally went to the doctors as in progressively got worse in my joints in December. He tested me for everything including Lyme. My first Serology for Lyme came back positive and my Western Blot negative (only IgM Band 39). He treated me for Lyme based on my symptoms. 3 weeks of Doxy. I went back for a check up in February. Still having a lot of headaches, eye floaters, leg, joint pain and fasciculation in my feet and legs. He redid my blood work. This time my Western Blot came back positive (2 IgM Bands p39 and p41). I am on my 3rd week of Doxy and still have all my symptoms. Worried it could be something else (ALS?). Some advise is greatly needed! Thanks :)
Unfortunately, from what I read, two weeks of ceftriaxone or anything else likely will not cure Lyme disease that has likely been in place for longer than a very few days. In addition, ceftriaxone, when given for Lyme, appears from what I read just now to be given only intravenously -- and I that may imply a deeply entrenched case of Lyme.
Lyme is a developing area of medicine, both in diagnosis and in treatment. What was in vogue a few years ago may not be the same, and the split between Lyme specialists and other docs on how to test, how to diagnosis and how to treat for how long are all still in play.
Here's a random thought: Lyme bacteria use magnesium (Mg) in their reproductive process, which leaves many of us with Lyme deficient in Mg. One symptom of low Mg levels is muscle aches and twitches, and this is on top of the American diet often being low in Mg already, even without Lyme. Taking good quality Mg supplements is quite helpful, and I continue to take them every day. There are several chemical varieties of Mg supplements, and from what I read, any variety ending in '-ate' is most absorbable by the body: Mg malate, aspartate, orotate, citrate, etc. I still still take Mg supplements every day with my other vitamins. There is one brand labeled "Mg CAO" (short for 'citrate, aspartate and orotate') that I particularly like, but I currently take Mg malate and like it too. (I have also read that one brand that blends Mg and calcium is (for some reason I don't recall) not particularly absorbable.) If you take Mg for twitching, be sure to tell your docs about the previous twitching and that you are taking Mg (and be sure to report all other meds and supplements too).
But back to Lyme treatment: bacteria in general reproduced very quickly, and it is when the cell wall is disrupted to split one Lyme bacterium into two bacteria that they are most susceptible to being killed by antibiotics. Most bacteria reproduce every 20 minutes, so 7 to 10 days of treatment gives lots of opportunities to kill them. Lyme bacteria, however, reproduce very very slowly, so the length of treatment for Lyme is much longer than most bacterial infections -- meaning months.
In addition, Lyme often (perhaps half the time) is accompanied by other infections carried by the 'Lyme' ticks, called as a group 'co-infections', and these other infections often need entirely different meds from those used to treat Lyme.
I would see a Lyme specialist, who would take a careful history of your symptoms, which would indicate which tests for other than Lyme need to be done. The doc can then determine what meds are needed, and often the co-infections are treated first; then when they are done, treatment for Lyme begins. I had one co-infection, and my treatment period was something like 6+ months total, tho it's been a while and maybe it was longer -- but it was definitely *months.*
Lyme is not your usual bacterium. If you see a doc who diagnoses Lyme but gives you only a few weeks of doxycycline (which is effective only in a very early infection, and it's often difficult to know when one was first infected) and sends you on your way, I would see another MD. All docs think they understand Lyme and its coinfections, but some of them are wrong. Lyme is a hotly contested area of medicine, and finding the right doc is critically important. An ILADS member doc is a good place to start, but not necessarily required -- Lyme is a complex disease that the medical profession is still coming to grips with, so keep your antennae up.
Lyme is a developing area of medicine, both in diagnosis and in treatment. What was in vogue a few years ago may not be the same, and the split between Lyme specialists and other docs on how to test, how to diagnosis and how to treat for how long are all still in play.
Here's a random thought: Lyme bacteria use magnesium (Mg) in their reproductive process, which leaves many of us with Lyme deficient in Mg. One symptom of low Mg levels is muscle aches and twitches, and this is on top of the American diet often being low in Mg already, even without Lyme. Taking good quality Mg supplements is quite helpful, and I continue to take them every day. There are several chemical varieties of Mg supplements, and from what I read, any variety ending in '-ate' is most absorbable by the body: Mg malate, aspartate, orotate, citrate, etc. I still still take Mg supplements every day with my other vitamins. There is one brand labeled "Mg CAO" (short for 'citrate, aspartate and orotate') that I particularly like, but I currently take Mg malate and like it too. (I have also read that one brand that blends Mg and calcium is (for some reason I don't recall) not particularly absorbable.) If you take Mg for twitching, be sure to tell your docs about the previous twitching and that you are taking Mg (and be sure to report all other meds and supplements too).
But back to Lyme treatment: bacteria in general reproduced very quickly, and it is when the cell wall is disrupted to split one Lyme bacterium into two bacteria that they are most susceptible to being killed by antibiotics. Most bacteria reproduce every 20 minutes, so 7 to 10 days of treatment gives lots of opportunities to kill them. Lyme bacteria, however, reproduce very very slowly, so the length of treatment for Lyme is much longer than most bacterial infections -- meaning months.
In addition, Lyme often (perhaps half the time) is accompanied by other infections carried by the 'Lyme' ticks, called as a group 'co-infections', and these other infections often need entirely different meds from those used to treat Lyme.
I would see a Lyme specialist, who would take a careful history of your symptoms, which would indicate which tests for other than Lyme need to be done. The doc can then determine what meds are needed, and often the co-infections are treated first; then when they are done, treatment for Lyme begins. I had one co-infection, and my treatment period was something like 6+ months total, tho it's been a while and maybe it was longer -- but it was definitely *months.*
Lyme is not your usual bacterium. If you see a doc who diagnoses Lyme but gives you only a few weeks of doxycycline (which is effective only in a very early infection, and it's often difficult to know when one was first infected) and sends you on your way, I would see another MD. All docs think they understand Lyme and its coinfections, but some of them are wrong. Lyme is a hotly contested area of medicine, and finding the right doc is critically important. An ILADS member doc is a good place to start, but not necessarily required -- Lyme is a complex disease that the medical profession is still coming to grips with, so keep your antennae up.
Thank you for your response! I have been using acupuncture and clean eating to also help the healing process. I have a follow up appointment on March 20th and I intend on asking my Doctor if he will treat me with 2 weeks of Ceftriaxone. I have read online that this is a good treatment if you have neuroborreliosis as I believe I do because of the fasciculation. If he will not take a more aggressive approach then I will seek some one who will. Is there anything else I should do? Would 2 weeks of Ceftriaxone 2mg/daily be enough?
Sick. Of. Twitching.
Thanks!
Sick. Of. Twitching.
Thanks!
Lyme is called the great pretender since it can mimic many other illnesses.
I was misdiagnosed with MS, Lupus and several more things. I treat the Lyme and fo-infections.
I was misdiagnosed with MS, Lupus and several more things. I treat the Lyme and fo-infections.
Welcome to MedHelp Lyme -- sorry to hear you are still ailing, but good for you for following up to figure out what's going on.
It's good your doc acknowledged your initial Lyme diagnosis -- note however that Band 39 shows up *only* when Lyme bacteria are present, even if it's the only positive band you have, and that would likely support a Lyme diagnosis. In your second test, Band 39 was still present, along with Band 41. Band 41 is part of the little whip-like tail of all spiral-shaped bacteria, of which Lyme is one. So you have two Lyme indicators, which is good evidence.
It sounds like your doc believes you have Lyme, because he is treating you. Doxycycline is a commonly used antibiotic against Lyme, but unless the diagnosis is made very quickly after infection and the doxy started right away, it is often not sufficient to kill the Lyme bacteria. Why? Because the Lyme bacteria can and do create and hide in slimy shields within your body called 'bio-films', where neither the immune system nor doxycycline can penetrate. (You also could have already had a low-level Lyme infection that just didn't make you very ill before the recent bite.)
Again, doxy works against Lyme bacteria ONLY very early in the infection; if the time boundary after infection is crossed, then doxy will not work, and often we don't know when we were first bitten. I never saw the tick that bit me, nor did others I know ... and even if you saw a tick, it might not have been the first tick that infected you, and your immune system kept you from feeling too ill.
So ... doxy just won't work if you have other than a very recent infection. I would seriously get a second opinion from an MD who thinks more aggressively. Your doc appears to follow the old fashioned approach, which has been in several ways discredited by more recent research. Doxy can't pierce the biofilm the Lyme bacteria hide in, and neither can the human immune system. It just requires other meds.
I would not worry about ALS until you have seen another, more progressive Lyme doc for a second opinion, and without delay. If your current doc did not give you a full copy of your test results, call and ask the clerk/whoever to send you a full copy with all the pages 'for my files.' That way they don't tend to get huffy about you seeing another doc.
Best wishes, and let us know how you do, okay?
It's good your doc acknowledged your initial Lyme diagnosis -- note however that Band 39 shows up *only* when Lyme bacteria are present, even if it's the only positive band you have, and that would likely support a Lyme diagnosis. In your second test, Band 39 was still present, along with Band 41. Band 41 is part of the little whip-like tail of all spiral-shaped bacteria, of which Lyme is one. So you have two Lyme indicators, which is good evidence.
It sounds like your doc believes you have Lyme, because he is treating you. Doxycycline is a commonly used antibiotic against Lyme, but unless the diagnosis is made very quickly after infection and the doxy started right away, it is often not sufficient to kill the Lyme bacteria. Why? Because the Lyme bacteria can and do create and hide in slimy shields within your body called 'bio-films', where neither the immune system nor doxycycline can penetrate. (You also could have already had a low-level Lyme infection that just didn't make you very ill before the recent bite.)
Again, doxy works against Lyme bacteria ONLY very early in the infection; if the time boundary after infection is crossed, then doxy will not work, and often we don't know when we were first bitten. I never saw the tick that bit me, nor did others I know ... and even if you saw a tick, it might not have been the first tick that infected you, and your immune system kept you from feeling too ill.
So ... doxy just won't work if you have other than a very recent infection. I would seriously get a second opinion from an MD who thinks more aggressively. Your doc appears to follow the old fashioned approach, which has been in several ways discredited by more recent research. Doxy can't pierce the biofilm the Lyme bacteria hide in, and neither can the human immune system. It just requires other meds.
I would not worry about ALS until you have seen another, more progressive Lyme doc for a second opinion, and without delay. If your current doc did not give you a full copy of your test results, call and ask the clerk/whoever to send you a full copy with all the pages 'for my files.' That way they don't tend to get huffy about you seeing another doc.
Best wishes, and let us know how you do, okay?
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