Aa
Babesia How long till I'm clear???
I started babesia treatment. seems to make muscles ache more. Probably a herx reaction. Does anyone know if it takes as long to fight babesia as lyme????? I am taking a herbal appraoch at this point...
@ betterticked
Thank you for your suggestions about how to 'interact' with our doctors---- I've passed those suggestions on myself after years and years of being an unpaid 'patient advocate'.
They can never be repeated too many times---- for each newbie (or not-so-newbie) needs to learn how to 'try' to get the most from their very short appt.
Here's another 'chuckle'. This week I took the order for back x-ray to the imaging center. When my doctor said s/he was going to order one I asked that views of me standing up be included since my theory was that if my back pain mostly hurt while standing---- that the compression (gravity) factor might show something that lying down wouldn't. She said o.k.
So when I got home the order didn't specifically say that but I thought, well, maybe a standing view is always included.
Cutting to the end---- I did get a standing view but not after a bit of 'back and forth'. :) The tech then told me it was always a good idea to check an order before you left the room.
I said, yeah, I know but when the doc has you firmly by the elbow and into the doorway it's hard to read a report!!! LOL
Thank you for your suggestions about how to 'interact' with our doctors---- I've passed those suggestions on myself after years and years of being an unpaid 'patient advocate'.
They can never be repeated too many times---- for each newbie (or not-so-newbie) needs to learn how to 'try' to get the most from their very short appt.
Here's another 'chuckle'. This week I took the order for back x-ray to the imaging center. When my doctor said s/he was going to order one I asked that views of me standing up be included since my theory was that if my back pain mostly hurt while standing---- that the compression (gravity) factor might show something that lying down wouldn't. She said o.k.
So when I got home the order didn't specifically say that but I thought, well, maybe a standing view is always included.
Cutting to the end---- I did get a standing view but not after a bit of 'back and forth'. :) The tech then told me it was always a good idea to check an order before you left the room.
I said, yeah, I know but when the doc has you firmly by the elbow and into the doorway it's hard to read a report!!! LOL
Howdy cave!
In regards to your post on "interacting with arrogant doctors"... I certainly did not take offense! What a hoot that you got under his skin by asking him to repeat himself because you couldn't hear him. Got me to chuckle for sure.
The way I see it is this, if you go to a doctor's appointment and you have done your research about your disease, you calmly open a dialogue with your physician about your concerns/complaints etc regarding your condition and that person does not want to listen to you because they "know everything because they are the doctor" then why would you want to see that person anyways? I fully understand that there are time limits for appointments and although I do not agree with the current standards that physicians schedule patients in 15-20 minute time slots nowadays in order to see enough patients in a day to pay their bills, it does not change the fact that they have an obligation to listen to the person who came to see them.
If you feel that you have a lot to discuss with the doctor then I recommend writing it all down before you get to the appointment and maybe handing your notes to them when they walk in so you don't forget to discuss something. Or...you could ask to be scheduled for a double time slot so you can address all of your issues if you feel that you are not getting all of your needs met. However, if the person is simply a you-know-what and doesn't like their "authority questioned" then I return to my original question... WHY are you their patient? I know that I wouldn't return to an office where I could not collaborate with my physician about my care, that's for sure.
As many people on this forum have mentioned, we may see our doctors once a month or every few months but we LIVE with this disease 24/7. We have to deal with the changes in our bodies every minute of the day and we know more about our diseases than they probably do. It doesn't mean that we have to be arrogant when we speak to them but we also don't deserve to receive arrogance from them either. It should be a collaborative relationship for the benefit of our health.
It is our job to learn as much as possible about our disease, make informed choices for ourselves, follow good treatment plans, seek medical assistance when we are out of our league and try to educate others about what we are going through. It is their job to keep us safe, teach us about the things that we don't know, watch out for all of the things that may not be a result of Lyme Disease, listen to us when we bring a concern to them, try to learn from us so they can be better practitioners and alleviate our suffering if they can. If that cannot be done in a mutually respectful atmosphere, then I choose to take my business elsewhere, where my voice might actually be heard.
Like I have mentioned, I don't make these statements lightly because even though I am now the "patient," I was once on the other side. I would hope that I practiced what I now preach.
In regards to your post on "interacting with arrogant doctors"... I certainly did not take offense! What a hoot that you got under his skin by asking him to repeat himself because you couldn't hear him. Got me to chuckle for sure.
The way I see it is this, if you go to a doctor's appointment and you have done your research about your disease, you calmly open a dialogue with your physician about your concerns/complaints etc regarding your condition and that person does not want to listen to you because they "know everything because they are the doctor" then why would you want to see that person anyways? I fully understand that there are time limits for appointments and although I do not agree with the current standards that physicians schedule patients in 15-20 minute time slots nowadays in order to see enough patients in a day to pay their bills, it does not change the fact that they have an obligation to listen to the person who came to see them.
If you feel that you have a lot to discuss with the doctor then I recommend writing it all down before you get to the appointment and maybe handing your notes to them when they walk in so you don't forget to discuss something. Or...you could ask to be scheduled for a double time slot so you can address all of your issues if you feel that you are not getting all of your needs met. However, if the person is simply a you-know-what and doesn't like their "authority questioned" then I return to my original question... WHY are you their patient? I know that I wouldn't return to an office where I could not collaborate with my physician about my care, that's for sure.
As many people on this forum have mentioned, we may see our doctors once a month or every few months but we LIVE with this disease 24/7. We have to deal with the changes in our bodies every minute of the day and we know more about our diseases than they probably do. It doesn't mean that we have to be arrogant when we speak to them but we also don't deserve to receive arrogance from them either. It should be a collaborative relationship for the benefit of our health.
It is our job to learn as much as possible about our disease, make informed choices for ourselves, follow good treatment plans, seek medical assistance when we are out of our league and try to educate others about what we are going through. It is their job to keep us safe, teach us about the things that we don't know, watch out for all of the things that may not be a result of Lyme Disease, listen to us when we bring a concern to them, try to learn from us so they can be better practitioners and alleviate our suffering if they can. If that cannot be done in a mutually respectful atmosphere, then I choose to take my business elsewhere, where my voice might actually be heard.
Like I have mentioned, I don't make these statements lightly because even though I am now the "patient," I was once on the other side. I would hope that I practiced what I now preach.
Ah, I didn't know about 'Calm.' Thanks for the data.
Do your docs pay attention to this stuff? If they don't, perhaps there is someone who understands body chemistry effects of Lyme etc. and can advise on supplements to smooth out these particular issues.
Also try Epsom salt baths, if you have not -- they are magnesium and it's absorbed through the skin. There is the possibility of taking too much magnesium in pill form, which I was warned can damage the kidneys, so it's not an open-ended thing to keep upping the dosage of the pills ... tho I think the dose has to get pretty high to cause damage. Something ask your doc or maybe a nutritionist or pharmacist ... not sure who the expert would be, or how 'high' a dose is a problem.
Somebody at your doc's should be on top of this kind of data, I'd think.
Take care, hope you feel better soon -- keep us posted. J.
Do your docs pay attention to this stuff? If they don't, perhaps there is someone who understands body chemistry effects of Lyme etc. and can advise on supplements to smooth out these particular issues.
Also try Epsom salt baths, if you have not -- they are magnesium and it's absorbed through the skin. There is the possibility of taking too much magnesium in pill form, which I was warned can damage the kidneys, so it's not an open-ended thing to keep upping the dosage of the pills ... tho I think the dose has to get pretty high to cause damage. Something ask your doc or maybe a nutritionist or pharmacist ... not sure who the expert would be, or how 'high' a dose is a problem.
Somebody at your doc's should be on top of this kind of data, I'd think.
Take care, hope you feel better soon -- keep us posted. J.
Calm is a combo of Citrate and carbonate it states on bottle and it is very sweet from the agave. I am goign to search for others. I do like it but I dobt know if im getting the help for muscles I need. They seems to roll twtich and vibrate as well as contract on their own. Its very weird. I do have better days then others but having a bad bought right now;_( thanks Jackie
oops, my bad:
should have said above that my favorite kind of Mg is a blend of citrate (NOT malate), aspartate and orotate. It just seems to suit my body chemistry, so your mileage may differ.
I've also taken Mg malate, and it was okay too. I just like the Magnesium CAO better.
I also find the capsule forms easier to swallow. I ran out of the Mg CAO and am now choking down solid horse pills of Mg malate -- gag. Everybody's different, so try different ones and you'll find something you like best.
should have said above that my favorite kind of Mg is a blend of citrate (NOT malate), aspartate and orotate. It just seems to suit my body chemistry, so your mileage may differ.
I've also taken Mg malate, and it was okay too. I just like the Magnesium CAO better.
I also find the capsule forms easier to swallow. I ran out of the Mg CAO and am now choking down solid horse pills of Mg malate -- gag. Everybody's different, so try different ones and you'll find something you like best.
Thanks for the info, BetterTickedoff:)
@leiljax I am in your corner as well:) I pray for happy days for us all.. Keep me posted as well..
@leiljax I am in your corner as well:) I pray for happy days for us all.. Keep me posted as well..
I am rooting for you!!! I am praying that the other doctors are wrong about everything, the doubt will melt away, and that our LLMD's will get us through it sooner than we think.
Do you find calm to be too sweet? It kinda upsets my stomach as sweet as it is. I was going to maybe try another version like suggested.
Continue to keep us/me posted and thanks for the notes! Thinking of you!
Do you find calm to be too sweet? It kinda upsets my stomach as sweet as it is. I was going to maybe try another version like suggested.
Continue to keep us/me posted and thanks for the notes! Thinking of you!
This is good times... Wish I could get used too all the weird symptoms. Maybe one day I will have a full recovery . Till then I will just bug you guys... :-)
Honestly,I wouldn't waste my money on other doctors that have no clue about Lyme. You may not feel better for a while and the symptoms you mention are typical Lyme.
You should call your doctor, you may just not be doing well on minocycline sounds like my herxes actually. I get "electric shock" pains in my legs and feet.
You should call your doctor, you may just not be doing well on minocycline sounds like my herxes actually. I get "electric shock" pains in my legs and feet.
Thank you for all of yoru responses. I feel like my leg twtiching and muscle pain is worse now on minocycline. Not sure its a herx or what. I plan to increase my magnesium. However I am so concerned I am getting worse and not better. I also experience a burning feeling sometimes under my skin a buzzing feeling. Mainly in my legs. I have another neuro appt on the 16th not sure he will do anything further. But worried it is something else:( I aso have wierd ankle pain now and muscle pain going up my leg. I just am pissed off right now. Getting exhausted from all this :( I do appreciate all of your input. It is much appreciated...
I'm counting on you, better, to not take this as criticism but simply as furthering of the subject of 'how to interact with your doctor'.
I totally agree with what you've said. Doctor's need to be 'educated' for sure. But some are so arrogant that the slightest hint of 'lowly patient is telling me what to do' will get their ire up, or worse they'll flag your chart.
I've had a few doctors who are absolutely fine with that and appreciate it. A few didn't. LOL You have to 'read' your doctor first.
I just went through this with an ENT (probably nothing related to Lyme). He improved on the statistics shown as to how quickly a doctor will interrupt a patient. Improved in a negative way.
I'm going to guess that he interrupted me every third sentence. Then the fun part was, because I'm hard of hearing, I asked him once to repeat what he just said. He turned an interesting shade of reddish purple and almost shouted at me-----don't interrupt me. I'm the doctor. You're the patient. You come here to get help. Don't interrupt me!!! LOL
Pot calling kettle??
Anyway I didn't interrupt him any more while collecting my jacket to leave. I've written a 'nice' letter to him explaining why I won't be seeing him anymore. Giggle.
I totally agree with what you've said. Doctor's need to be 'educated' for sure. But some are so arrogant that the slightest hint of 'lowly patient is telling me what to do' will get their ire up, or worse they'll flag your chart.
I've had a few doctors who are absolutely fine with that and appreciate it. A few didn't. LOL You have to 'read' your doctor first.
I just went through this with an ENT (probably nothing related to Lyme). He improved on the statistics shown as to how quickly a doctor will interrupt a patient. Improved in a negative way.
I'm going to guess that he interrupted me every third sentence. Then the fun part was, because I'm hard of hearing, I asked him once to repeat what he just said. He turned an interesting shade of reddish purple and almost shouted at me-----don't interrupt me. I'm the doctor. You're the patient. You come here to get help. Don't interrupt me!!! LOL
Pot calling kettle??
Anyway I didn't interrupt him any more while collecting my jacket to leave. I've written a 'nice' letter to him explaining why I won't be seeing him anymore. Giggle.
Just a general "lesson" about magnesium as it is one of my greatest battles at the moment... Ricobord is absolutely correct that only about 1% of your overall magnesium is located in your serum (blood) so when you have a routine blood test and your doctor tells you that your magnesium level is normal you are not necessarily out of the woods. The typical range of a serum magnesium is (1.5-3.0) for most labs. The rest of your magnesium is located in your red blood cells, tissue and bones. If your serum magnesium were to fall, your body would leech it out of your bones to keep the level high enough to maintain body functions like a regular heart rate and muscle contraction. It is responsible for appropriate cell functioning in the body and will alter the levels of calcium and potassium in your body if you become too low in magnesium.
Lyme patients are chronically low in magnesium and calcium due to our poor absorption issues as well as our mitochondrial dysfunction. The only good news about our lack of magnesium is that biofilms need magnesium and calcium to form. However, our bodies need magnesium and calcium to function without severe muscle cramping and life threatening cardiac arrhythmias! Needless to say, we need to take supplements of magnesium because the beat of the heart is pretty important.
Thankfully, there are many types of oral magnesium on the market so people can typically find one version or another to take without suffering the GI side effects that will keep them in the bathroom all day. Unfortunately, I am not one of those people so I am currently getting magnesium by running it into my IV line every day right now! For those of you who do not have a PICC line, there is also the option of magnesium injections but it is quite rare to have to go to that extreme as most people can find an oral alternative as I mentioned.
The point of this lesson was to discuss the blood test that you should be requesting in order to find out if you are truly "deficient" in magnesium or not. If you find yourself having severe muscle cramps in your legs that you cannot attribute to herxing or you are suffering from new onset tachycardia, palpitations, irregular heartbeats (and you are NOT consuming a pot of coffee every day because we all know that Lymies are not supposed to be doing that right???)...then maybe it is time for you to ask your doctor to check your RBC magnesium level. It is not your SERUM magnesium level....it is your RBC magnesium level. The range is typically (4.0-6.4) but most people should really be above 4.5 to be in the safe zone.
A lot of doctors are going to look at you funny and say, "But your last serum magnesium level was fine..." at which point you will have to educate them about the ~ only 1% of your body's mag is stored in your serum ~ quote I mentioned at the beginning of this post but we are used to educating our doctors right? Then they will quizzically look at the lab order form because they don't know how to order it so...it is a lavender top tube that needs to be spun and processed relatively quickly after it is drawn, it can't sit there for all eternity. It takes about 5 days to get the results back.
Tah Dah...there you have it! That's how to find out if you are REALLY deficient in magnesium. Now, go take your honking supplements with a smile so you don't get leg cramps or an irregular heartbeat. Enjoy! :)
Lyme patients are chronically low in magnesium and calcium due to our poor absorption issues as well as our mitochondrial dysfunction. The only good news about our lack of magnesium is that biofilms need magnesium and calcium to form. However, our bodies need magnesium and calcium to function without severe muscle cramping and life threatening cardiac arrhythmias! Needless to say, we need to take supplements of magnesium because the beat of the heart is pretty important.
Thankfully, there are many types of oral magnesium on the market so people can typically find one version or another to take without suffering the GI side effects that will keep them in the bathroom all day. Unfortunately, I am not one of those people so I am currently getting magnesium by running it into my IV line every day right now! For those of you who do not have a PICC line, there is also the option of magnesium injections but it is quite rare to have to go to that extreme as most people can find an oral alternative as I mentioned.
The point of this lesson was to discuss the blood test that you should be requesting in order to find out if you are truly "deficient" in magnesium or not. If you find yourself having severe muscle cramps in your legs that you cannot attribute to herxing or you are suffering from new onset tachycardia, palpitations, irregular heartbeats (and you are NOT consuming a pot of coffee every day because we all know that Lymies are not supposed to be doing that right???)...then maybe it is time for you to ask your doctor to check your RBC magnesium level. It is not your SERUM magnesium level....it is your RBC magnesium level. The range is typically (4.0-6.4) but most people should really be above 4.5 to be in the safe zone.
A lot of doctors are going to look at you funny and say, "But your last serum magnesium level was fine..." at which point you will have to educate them about the ~ only 1% of your body's mag is stored in your serum ~ quote I mentioned at the beginning of this post but we are used to educating our doctors right? Then they will quizzically look at the lab order form because they don't know how to order it so...it is a lavender top tube that needs to be spun and processed relatively quickly after it is drawn, it can't sit there for all eternity. It takes about 5 days to get the results back.
Tah Dah...there you have it! That's how to find out if you are REALLY deficient in magnesium. Now, go take your honking supplements with a smile so you don't get leg cramps or an irregular heartbeat. Enjoy! :)
About 95-98% of our body's magnesium is in our tissues. The rests floats in the blood stream. Magnesium levels in the tissues can drop while blood levels stay the same. Low mag on a blood test says that your tissues have almost none left at all, which means you're extremely low and probably have a multitude of serious problems.
Mine tested "normal", too, and even my GP agreed the test isn't very useful. My twitching really declined with supplements, which is what told me that they were helping. I've stayed on Mag since.
Mine tested "normal", too, and even my GP agreed the test isn't very useful. My twitching really declined with supplements, which is what told me that they were helping. I've stayed on Mag since.
I tried several formulations of Mg, all ending in "-ate", because I read that's the kind the body can best absorb. I like one that is a blend of Mg malate, orotate and aspartate, but you may find others. I prefer the capsules to the big horse pills I am taking now (ran out of the Magesium CAO, had to buy something else), but that may be more esthetic than functional.
"Calm" is magnesium citrate. You might try a different type of magnesium to see if it works better.
I take magnesium malate so that might be one to try, if you're up for experimenting. I'm not saying I 'know' this type will help you but it might be worth a try.
The quote below is just one that I've seen about measuring serum levels as an indication of how much a person's mg levels are.
" serum magnesium level is the LEAST sensitive way to detect a drop in your total body magnesium level. So rates of magnesium deficiency could be even higher!"
Take that as just a factoid---- but one repeated by many doctors. But if your levels are 'normal' then perhaps everything is copacetic. :)
I take magnesium malate so that might be one to try, if you're up for experimenting. I'm not saying I 'know' this type will help you but it might be worth a try.
The quote below is just one that I've seen about measuring serum levels as an indication of how much a person's mg levels are.
" serum magnesium level is the LEAST sensitive way to detect a drop in your total body magnesium level. So rates of magnesium deficiency could be even higher!"
Take that as just a factoid---- but one repeated by many doctors. But if your levels are 'normal' then perhaps everything is copacetic. :)
When an antibiotic is started for Lyme the symptoms often/usually are worse.
This is because of the Herxheimer (herx) or die off of bacteria in the body.
Wike is quoted here simply because it's much easier to understand.
"The Jarisch-Herxheimer reaction resembles bacterial sepsis and can occur after initiation of antibacterials, such as penicillin or tetracycline, for the treatment of louse-borne relapsing fever (80-90% of patients) and in tick-borne relapsing fever (30-40%). An association has been found between the release of heat-stable proteins from spirochetes and the reaction. Typically, the death of these bacteria and the associated release of endotoxins or lipoproteins occurs faster than the body can remove the substances. It usually manifests within a few hours of the first dose of antibiotic as fever, chills, rigor, hypotension, headache, tachycardia, hyperventilation, vasodilation with flushing, myalgia (muscle pain), exacerbation of skin lesions and anxiety. The intensity of the reaction indicates the severity of inflammation."
"The reaction is also seen in other diseases caused by spirochetes, such as borreliosis (Lyme disease and tick-borne relapsing fever) and leptospirosis, and in Q fever.[1] Similar reactions have also been reported to occur in bartonellosis (including cat scratch disease),[2][3] brucellosis,[4] typhoid fever,[5] and trichinosis.[6]"
http://en.wikipedia.org/wiki/Herx
A 'herx' is sometimes used as a marker that the drug is 'working' and often is greeted with 'joy'!!!!! I never felt that way. LOL
It's easy to confuse a 'herx' with a reaction to the drug----- and that's why being under the care of a good LLMD is important.
But the 'take way' message is---- whenever you apply a 'rule' to Lyme, the bugs (or a drug) will ignore it.
The twitching may or may not be due to a herx but taking magnesium is often the way to control it. That's what I do, FWIW.
This is because of the Herxheimer (herx) or die off of bacteria in the body.
Wike is quoted here simply because it's much easier to understand.
"The Jarisch-Herxheimer reaction resembles bacterial sepsis and can occur after initiation of antibacterials, such as penicillin or tetracycline, for the treatment of louse-borne relapsing fever (80-90% of patients) and in tick-borne relapsing fever (30-40%). An association has been found between the release of heat-stable proteins from spirochetes and the reaction. Typically, the death of these bacteria and the associated release of endotoxins or lipoproteins occurs faster than the body can remove the substances. It usually manifests within a few hours of the first dose of antibiotic as fever, chills, rigor, hypotension, headache, tachycardia, hyperventilation, vasodilation with flushing, myalgia (muscle pain), exacerbation of skin lesions and anxiety. The intensity of the reaction indicates the severity of inflammation."
"The reaction is also seen in other diseases caused by spirochetes, such as borreliosis (Lyme disease and tick-borne relapsing fever) and leptospirosis, and in Q fever.[1] Similar reactions have also been reported to occur in bartonellosis (including cat scratch disease),[2][3] brucellosis,[4] typhoid fever,[5] and trichinosis.[6]"
http://en.wikipedia.org/wiki/Herx
A 'herx' is sometimes used as a marker that the drug is 'working' and often is greeted with 'joy'!!!!! I never felt that way. LOL
It's easy to confuse a 'herx' with a reaction to the drug----- and that's why being under the care of a good LLMD is important.
But the 'take way' message is---- whenever you apply a 'rule' to Lyme, the bugs (or a drug) will ignore it.
The twitching may or may not be due to a herx but taking magnesium is often the way to control it. That's what I do, FWIW.
I take calm as well. My twitching is better but my symptoms change constantly and the twotching is never one:-( now have weird foot sensation with twithing primarily in legs..
My magnesium has been tested and it's normal. Also, I've been taking magnesium by Calm just in case and have not noticed even the slightest difference:(
I don't beleive I was reinfected but maybe being sick brought out more symptoms. I beleive the doxy made my symptoms worse as well. Legs twitched more and cramps in legs became worse.
The heart is a muscle too, so if you are low on magnesium .... well, you get the point.
"My twitches in legs were constant for a while but I do get a little relief from them now but they aren't gone." ...
"I do get cramps in my calves a well they are better but still get them..."
Muscle twitches and cramping can be caused by low magnesium levels in the blood, and Lyme uses up the magnesium. If you are not taking supplements, I'd consider it and ask the doc.
"... for me was that this all started after a month long gastritis issue and I belief I was infected with Lyme 6 years ago."
Could have been a reinfection. Lyme ticks don't know if they are biting someone who already has Lyme. The new tickbite can also bring new coinfections. And you may not know you got bitten again. Many possibilities.
"I do get cramps in my calves a well they are better but still get them..."
Muscle twitches and cramping can be caused by low magnesium levels in the blood, and Lyme uses up the magnesium. If you are not taking supplements, I'd consider it and ask the doc.
"... for me was that this all started after a month long gastritis issue and I belief I was infected with Lyme 6 years ago."
Could have been a reinfection. Lyme ticks don't know if they are biting someone who already has Lyme. The new tickbite can also bring new coinfections. And you may not know you got bitten again. Many possibilities.
I get cramps in my calves as well. They come and go. I worry about them most when my heart pauses (skips a beat) at night. All of these symptoms are so scary, so I totally understand where you are coming from and the fact that I've been on doxycycline for over a month and only noticed symptoms worsening is discouraging. I keep trying to have faith and know that 1 month of treatment is very small in comparison to this long battle, but impatience is wearing me down. Praying we break through this soon!
My twitches started after a week on doxy. My numbness in left hand was coming and going but has stayed a a few days now with some brief relief here and there. My right foot has started with a weird heaviness numb feeling and sometimes painful on top of the foot and around the ankle. My twitches in legs were constant for a while but I do get a little relief from them now but they aren't gone. As I'm typing hands left hands numb and I am experiencing mild twitches. I diagnosed myself with als three months ago but know its not likely.but I do get cramps in my calves a well they are better but still get them... You sound like you have very similar symptoms as mine. The strangest part for me was that this all started after a month long gastritis issue and I belief I was infected with Lyme 6 years ago. The only symptoms experienced previous were flu like symptoms twice or three time a year that lasted a long time sometimes. 3 weeks.
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