Aa
sharing my experience
Hello everyone...I've had lyme for 5 yrs & been on meds since 4. almost asymptomatic now....wanted to share some things I learnt in my lyme journey..
1. For those who have symptoms in their knees alone or predominantly....I wud suggest u buy an infrared lamp. Direct it to the back of your knee joint...this is where all the blood vessels supplying your knee joint are...not only does the heat weaken the bugs...the blood vessels also dilate...pumping a higher dose of antibiotics into your knees. U can do this 20 min at a time upto 6 times a day. Plz check ur lamp instructions for how near u can keep the lamp. It worked very well for me.this can't be done for the head region as it can be very dangerous and cause a seizure if used there
2. Do give fluconazole 200 mg a try....it works well for some people & worked for me!
Other drugs I've cycled are doxycycline 200 mg twice a day & erythromycin-septran.
3. Do read Dr Burrascanos guidelines...don't be careless with add ons (meds other than antibiotics) he's listed as mandatory....I didn't and nearly had a seizure from low magnesium.
4. Don't lose hope....I'm doing so much better I'm sure I will be sharing my complete recovery story in a couple of months!
1. For those who have symptoms in their knees alone or predominantly....I wud suggest u buy an infrared lamp. Direct it to the back of your knee joint...this is where all the blood vessels supplying your knee joint are...not only does the heat weaken the bugs...the blood vessels also dilate...pumping a higher dose of antibiotics into your knees. U can do this 20 min at a time upto 6 times a day. Plz check ur lamp instructions for how near u can keep the lamp. It worked very well for me.this can't be done for the head region as it can be very dangerous and cause a seizure if used there
2. Do give fluconazole 200 mg a try....it works well for some people & worked for me!
Other drugs I've cycled are doxycycline 200 mg twice a day & erythromycin-septran.
3. Do read Dr Burrascanos guidelines...don't be careless with add ons (meds other than antibiotics) he's listed as mandatory....I didn't and nearly had a seizure from low magnesium.
4. Don't lose hope....I'm doing so much better I'm sure I will be sharing my complete recovery story in a couple of months!
Yes thank you, I hear you. There are so many different opinions out there - I keep hearing about pulsing the antibiotics and low dose antibiotics, that antibiotics suppress the immune system, etc. Then I hear that the oral doxy I am on is probably not adequate if I am having cognitive issues, etc, which I am.....and have been for years.
But I do have a lyme literate doctor (she diagnosed based on her examination of me and my history, even though tests were not 100% certain - only one band on the Western Blot when two is more conclusive, but the CD57 was in the low 30s) . So I have decided to follow her course of treatment (and your advice!) and see what happens. I think she expects that I will need IV antibiotics ultimately, but she is starting conservatively, and I am fine with that. She told me this could take a year, two, maybe more. But in the meantime I know I need to deal with the devastation to my gut (where the immune system also resides) caused by the indiscriminate abx bombing that will kill my allies as well as my enemies......and leave me vulnerable to other invaders. To complete the analogy. :)
One thing I need to bring up with her when I go back is the cognitive issues. I'm thinking somehow that got missed in our previous appointments.
But I do have a lyme literate doctor (she diagnosed based on her examination of me and my history, even though tests were not 100% certain - only one band on the Western Blot when two is more conclusive, but the CD57 was in the low 30s) . So I have decided to follow her course of treatment (and your advice!) and see what happens. I think she expects that I will need IV antibiotics ultimately, but she is starting conservatively, and I am fine with that. She told me this could take a year, two, maybe more. But in the meantime I know I need to deal with the devastation to my gut (where the immune system also resides) caused by the indiscriminate abx bombing that will kill my allies as well as my enemies......and leave me vulnerable to other invaders. To complete the analogy. :)
One thing I need to bring up with her when I go back is the cognitive issues. I'm thinking somehow that got missed in our previous appointments.
"if the bacteria need magnesium to reproduce, is it a good idea to feed them magnesium?!"
What a great question! I never thought of it that way before. I understand the point, but because the Lyme bacteria seem to take first claim on any Mg you ingest, you will not ever beat them to the punch. It's like if they needed oxygen: you could stop breathing, and that would kill the bacteria, but it wouldn't do a lot for you either, if you get my drift. :(
So I look at it this way: I needed the Mg to keep functioning well, and I took antibiotics to kill the Lyme bacteria. So the bugz may get a Mg snack now and then, but there's an antibiotic steamroller headed their way soon. >SPLAT!<
I don't know about naltrexone, but I would rethink the approach of trying to help your immune system kill the infection. It's true that Lyme bacteria suppress the human immune system, but that doesn't mean the immune system (even with reinforcement) can, by itself, kill all the Lyme bacteria.
Lyme bacteria are in the same family as the bacteria that cause syphilis, and no way would bolstering the human immune system wipe out a case of syphilis. We're talking one big nasty disease family here.
Don't be afraid of antibiotics -- they are nothing compared to the thuggery of bacteria in the syphilis and Lyme family. There has been a lot of press lately about over-use of antibiotics, but the problem is not using the right antibiotics in the right amount for the right length of time -- the problem is people who take the wrong (ineffective) antibiotics for too short a time and don't take enough of it -- the object is to kill them all, and fast -- before they can become resistant to the antibiotics.
I have talked to people who take smaller doses and for a shorter time than their doc prescribes, on the theory that they don't want to 'get dependent' on antibiotics. Wrong, wrong, wrong -- that is exactly the worst thing to do, for the reasons stated above -- and not only for that person, but also for the rest of us who do not need medication-resistant super-bacteria created. Then we all lose all the time.
If you are not familiar with what syphilis could do a person before penicillin was discovered, do a little wandering on the 'net and see. Syphilis and Lyme are caused by bacteria in the same family, and both need serious and complete treatment. I took the meds, it was no big deal ... and I don't take meds for no reason, for the rationale stated above: antibiotics are for serious diseases, but they must be taken as prescribed, or we are all sunk in the big picture.
Sorry to rant here, but I know there is a lot of talk these days about not wanting 'get dependent' on antibiotics. Can't happen. But incompletely treated bacterial infections? Those are bad for all of humanity, directly and indirectly.
Go for the antibiotics, in full dose, for the full length of time. It's worth it. end/rant :)
What a great question! I never thought of it that way before. I understand the point, but because the Lyme bacteria seem to take first claim on any Mg you ingest, you will not ever beat them to the punch. It's like if they needed oxygen: you could stop breathing, and that would kill the bacteria, but it wouldn't do a lot for you either, if you get my drift. :(
So I look at it this way: I needed the Mg to keep functioning well, and I took antibiotics to kill the Lyme bacteria. So the bugz may get a Mg snack now and then, but there's an antibiotic steamroller headed their way soon. >SPLAT!<
I don't know about naltrexone, but I would rethink the approach of trying to help your immune system kill the infection. It's true that Lyme bacteria suppress the human immune system, but that doesn't mean the immune system (even with reinforcement) can, by itself, kill all the Lyme bacteria.
Lyme bacteria are in the same family as the bacteria that cause syphilis, and no way would bolstering the human immune system wipe out a case of syphilis. We're talking one big nasty disease family here.
Don't be afraid of antibiotics -- they are nothing compared to the thuggery of bacteria in the syphilis and Lyme family. There has been a lot of press lately about over-use of antibiotics, but the problem is not using the right antibiotics in the right amount for the right length of time -- the problem is people who take the wrong (ineffective) antibiotics for too short a time and don't take enough of it -- the object is to kill them all, and fast -- before they can become resistant to the antibiotics.
I have talked to people who take smaller doses and for a shorter time than their doc prescribes, on the theory that they don't want to 'get dependent' on antibiotics. Wrong, wrong, wrong -- that is exactly the worst thing to do, for the reasons stated above -- and not only for that person, but also for the rest of us who do not need medication-resistant super-bacteria created. Then we all lose all the time.
If you are not familiar with what syphilis could do a person before penicillin was discovered, do a little wandering on the 'net and see. Syphilis and Lyme are caused by bacteria in the same family, and both need serious and complete treatment. I took the meds, it was no big deal ... and I don't take meds for no reason, for the rationale stated above: antibiotics are for serious diseases, but they must be taken as prescribed, or we are all sunk in the big picture.
Sorry to rant here, but I know there is a lot of talk these days about not wanting 'get dependent' on antibiotics. Can't happen. But incompletely treated bacterial infections? Those are bad for all of humanity, directly and indirectly.
Go for the antibiotics, in full dose, for the full length of time. It's worth it. end/rant :)
Thank you all for your advice and information. Even though each of us is different, and responds differently to various drugs and supplements, it is still useful to understand what works for others and where things might be headed. One question - if the bacteria need magnesium to reproduce, is it a good idea to feed them magnesium?!! Just asking. I know the symptoms of magnesium deficiency are distressing, but we don't want to grow baby Lyme bugs, either......Second question: has anyone tried low dose naltrexone to stimulate the immune system and fight the disease?
Let us know what you hear from the pharmacist and how you do -- best wishes!
I am glad to hear Mg is helping!
The combination of magnesium and calcium is not a bad thing in and of itself -- my comment was made in thinking about a particularly well-advertised brand here in the US that does not have a good reputation among some.
But your pharmacist may be able to speak with you knowledgeably about what is the best approach to taking in more magnesium -- I have learned over the years that pharmacists in the US are not relied upon as much as they could be, because they have a wealth of knowledge. All the power here is given to the MD.
Telling your pharmacist that you want to increase your intake of "Mg [something ending in -ate]" may get you just the right thing, and the compounds of Mg and calcium that are available to you may be much better quality than what we have in the US.
Sorry if this is confusing. What I mean to say is: taking magnesium-and-calcium is not (as far as I know) a bad thing, but the brand of that combination most commonly sold in the US does not have the best reputation. Your pharmacist can likely guide you.
The combination of magnesium and calcium is not a bad thing in and of itself -- my comment was made in thinking about a particularly well-advertised brand here in the US that does not have a good reputation among some.
But your pharmacist may be able to speak with you knowledgeably about what is the best approach to taking in more magnesium -- I have learned over the years that pharmacists in the US are not relied upon as much as they could be, because they have a wealth of knowledge. All the power here is given to the MD.
Telling your pharmacist that you want to increase your intake of "Mg [something ending in -ate]" may get you just the right thing, and the compounds of Mg and calcium that are available to you may be much better quality than what we have in the US.
Sorry if this is confusing. What I mean to say is: taking magnesium-and-calcium is not (as far as I know) a bad thing, but the brand of that combination most commonly sold in the US does not have the best reputation. Your pharmacist can likely guide you.
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