Aa
Higher Fever when Herxing?
My youngest daughter got hit in the solar plexus with a football the problem is that is directly over her pacemaker. We are now on the way (200 miles) to a children's hospital to get it removed. She got it in '04 after an allergic reaction and it has never served a purpose in 8 years but now she can't feel it under her skin and she is getting periodic sharp pains in her abdomen. We are hoping it is not dangling by a wire or something, but it seems kind of suspicious.
My problem is I took a break from my ABx since I had permission to do so for my 48 hours on call for work and this is going to be just about as inconvenient to be feeling so horrible; I haven't taken them since yesterday afternoon and when I took the break last week, by now I was feeling pretty decent. But today I woke w/ a fever of 101.5 and because I am feeling like a wimp and couldn't take it, I have had to take ibuprofen 2x today and it barely helped w/ the pain or the fever. It is still around 100. I don't feel like I am coming down w/ something else. I feel like I have been feeling on the ABx. I tried to talk to my LLMD to see if I could get a Lyrica Rx so I could quit taking these breaks and to ask if this just means my own immune system is getting aggressive w/ the Lyme/Barts or if I could have something contagious. He never got back to me. I hope he will call me tomorrow, but I am anxious about going into a children's hospital if I could have something contagious, and we have to be there for Pre-Op at 9:30.
Have any of you experienced anything like this? Are any of you as prone to running these fevers as frequently as I am? About 50% of the time is is around 99.5 or slightly higher, but I don't usually feel this horrible at the same time. I am not coughing or sneezing, my stomach is only slightly upset from the pain and if I get the pain to back off a little I can eat w/ no consequences. It is really just just this fever and feeling like pretty much every injury I can remember just happenedalong with weird fluttering and stabbing pains in all these areas: broken T5 vertebrae, my horse ran my knee into an arena fence at full barrel racing speed, a barn door shut on my ankle and cut my Achilles tendon about 25% thru, various skiing and racecar accidents.....you get the idea! I think I have a pretty high pain threshold, but I can't take ALL these things hurting all at once!!
Does this sound like normal herxing to those of you who have been through this? Have any of you continued during a break from Abx Or did any of you have to take a break?
Do you think I am going to have to sit in a hotel room while my daughter does her Pre-Op and Surgery? I can't imagine doing that, but she is going to be in CICU for part of the week and I sure don't want to give something to one of those sick little babies!
My problem is I took a break from my ABx since I had permission to do so for my 48 hours on call for work and this is going to be just about as inconvenient to be feeling so horrible; I haven't taken them since yesterday afternoon and when I took the break last week, by now I was feeling pretty decent. But today I woke w/ a fever of 101.5 and because I am feeling like a wimp and couldn't take it, I have had to take ibuprofen 2x today and it barely helped w/ the pain or the fever. It is still around 100. I don't feel like I am coming down w/ something else. I feel like I have been feeling on the ABx. I tried to talk to my LLMD to see if I could get a Lyrica Rx so I could quit taking these breaks and to ask if this just means my own immune system is getting aggressive w/ the Lyme/Barts or if I could have something contagious. He never got back to me. I hope he will call me tomorrow, but I am anxious about going into a children's hospital if I could have something contagious, and we have to be there for Pre-Op at 9:30.
Have any of you experienced anything like this? Are any of you as prone to running these fevers as frequently as I am? About 50% of the time is is around 99.5 or slightly higher, but I don't usually feel this horrible at the same time. I am not coughing or sneezing, my stomach is only slightly upset from the pain and if I get the pain to back off a little I can eat w/ no consequences. It is really just just this fever and feeling like pretty much every injury I can remember just happenedalong with weird fluttering and stabbing pains in all these areas: broken T5 vertebrae, my horse ran my knee into an arena fence at full barrel racing speed, a barn door shut on my ankle and cut my Achilles tendon about 25% thru, various skiing and racecar accidents.....you get the idea! I think I have a pretty high pain threshold, but I can't take ALL these things hurting all at once!!
Does this sound like normal herxing to those of you who have been through this? Have any of you continued during a break from Abx Or did any of you have to take a break?
Do you think I am going to have to sit in a hotel room while my daughter does her Pre-Op and Surgery? I can't imagine doing that, but she is going to be in CICU for part of the week and I sure don't want to give something to one of those sick little babies!
This situation sounds so complicated and I am really sorry that your daughter is going through this.
Thinking of you all - please let us know how it goes when you see the other doctor.
Thinking of you all - please let us know how it goes when you see the other doctor.
All of you brought up good points. We have checked the pacemaker serial # repeatedly and it is not w/i the range of #'s recalled by Medtronic several years ago. She said she wanted it as a souveniour and at first they said they had to send it back to Medtronic to be downloaded, cleaned, and engraved w/ her name. That really bothered my suspicious nature and made me think they would "fix" it if it did prove to be defective and make it impossible for us to prove it. In the end, the surgeon gave it to me as soon as he came out to tell me the surgery was over and the serial # does match her card. My husband is also suspicious and is trying to find an independent lab that will test it for all defects.
The electrocardiologists are supposed to be some to the best in the country, and the last time they had a consult w/ some other top ones in Utah and Florida. I don't know if there was any cross country conference call consults this time or not. I have scheduled a 2nd opinion with another electrocardiologist but can't get her in until the end of June, and his reputation doesn't seem to be as impressive as the original doctor....not too happy about that delay or the downgrade. One thing though is that I don't think the younger docs are just blindly going along w/ the older doc, they were openly critical of the decision to remove the pacemaker and his lack of communication if he really thought this could happen again, he didn't mention it to anyone else! And one of them even admitted that she couldn't understand why he had had her pacemaker turned up so high (like for an old person w/ an unhealthy heart) when it responded to a much lower setting that she turned it down to, in 2010.
She does have one truly "signature sign" of vasovagal syncope and that is extreme nausea at the beginning of the episode. She has actually thrown up 2/5 times. Here is a link to an article with some good info on this condition when it severely slows or stops the heart entirely. I have to admit, it sounds exactly spot on for what happens. Dolfnlvr, did you have episodes of this when you were in labor? They said they would expect it to crop up again at that time and that really sounds like very poor timing to me!
http://advan.physiology.org/content/29/1/15.full
The electrocardiologists are supposed to be some to the best in the country, and the last time they had a consult w/ some other top ones in Utah and Florida. I don't know if there was any cross country conference call consults this time or not. I have scheduled a 2nd opinion with another electrocardiologist but can't get her in until the end of June, and his reputation doesn't seem to be as impressive as the original doctor....not too happy about that delay or the downgrade. One thing though is that I don't think the younger docs are just blindly going along w/ the older doc, they were openly critical of the decision to remove the pacemaker and his lack of communication if he really thought this could happen again, he didn't mention it to anyone else! And one of them even admitted that she couldn't understand why he had had her pacemaker turned up so high (like for an old person w/ an unhealthy heart) when it responded to a much lower setting that she turned it down to, in 2010.
She does have one truly "signature sign" of vasovagal syncope and that is extreme nausea at the beginning of the episode. She has actually thrown up 2/5 times. Here is a link to an article with some good info on this condition when it severely slows or stops the heart entirely. I have to admit, it sounds exactly spot on for what happens. Dolfnlvr, did you have episodes of this when you were in labor? They said they would expect it to crop up again at that time and that really sounds like very poor timing to me!
http://advan.physiology.org/content/29/1/15.full
Ditto what is said in recent comments -- when MedHelp went down for maintenance last night, I was in the middle of a message trying to cover the same territory as youvegottobekidding's post above, only mine was far less knowledgeable.
It sounds like from the earlier comments that the head doc has a fixed idea of what he thinks is right and the junior docs are just falling into line with the head doc's point of view.
I would think about getting a second opinion ---
It sounds like from the earlier comments that the head doc has a fixed idea of what he thinks is right and the junior docs are just falling into line with the head doc's point of view.
I would think about getting a second opinion ---
BTW/FYI--just to let you know--on top of all this LYME crap, I was diagnosed with Neurocardiogenic syncope at age 18. My heart rate drops to 12 bpm when I "faint" and talk of pacers have come up for me several times in my history as well. I'm sure it is not "helping" my current issues.
If you wanna chat--feel free to PM--
Life is a crazy ride--and there are a lot of dips on this coaster, but, for all the stomach twisting dips and turns, it's a ride I don't want to get off of any time soon-- :-)
Yours,
A
If you wanna chat--feel free to PM--
Life is a crazy ride--and there are a lot of dips on this coaster, but, for all the stomach twisting dips and turns, it's a ride I don't want to get off of any time soon-- :-)
Yours,
A
I have only been scanning this line of posts, but I read your description about the pacer in your daughter's chest and had a few questions--forgive me if you've already addressed them--I'm at work, and need to be quick.
I don't know what state you are in, but---
In Florida, when you get a pacemaker or any implant, they give you a card immediately following the surgery. The card tells you the name brand, make, model and location of the device implanted in case you are traveling and have some sort of "problem" that another hospital or doctor will need to deal with. I don't know of any other state that does this.
Why do I bring this up? Well, my father has one of those cards, and it has come in handy SEVERAL TIMES!!! INCLUDING the many heart stint recalls that have recently gone out to the public!!!
Most people have NO IDEA what machinery are actually inside of them, and for various reasons, hospitals/doctors rarely share unless directly asked--mostly this has to do with malpractice etc. So, when recalls occur, patients rarely know if it affects them, and if patients are having problems (such as the ones your daughter is complaining about) they often do not know where to go to find out if the machinery itself is on a recall or watch list by manufacturers.
Regardless of your daughter's cardiologist's bedside manner or whatever, please ask for a manufacturers report for the implanted pacer used in her case. From there, you can check with the company to determine if there are any other issues with the make/model and you can see if there is any recourse other than begging the Dr.s to listen to you.
Good luck--and again--sorry if this has already come up....
I don't know what state you are in, but---
In Florida, when you get a pacemaker or any implant, they give you a card immediately following the surgery. The card tells you the name brand, make, model and location of the device implanted in case you are traveling and have some sort of "problem" that another hospital or doctor will need to deal with. I don't know of any other state that does this.
Why do I bring this up? Well, my father has one of those cards, and it has come in handy SEVERAL TIMES!!! INCLUDING the many heart stint recalls that have recently gone out to the public!!!
Most people have NO IDEA what machinery are actually inside of them, and for various reasons, hospitals/doctors rarely share unless directly asked--mostly this has to do with malpractice etc. So, when recalls occur, patients rarely know if it affects them, and if patients are having problems (such as the ones your daughter is complaining about) they often do not know where to go to find out if the machinery itself is on a recall or watch list by manufacturers.
Regardless of your daughter's cardiologist's bedside manner or whatever, please ask for a manufacturers report for the implanted pacer used in her case. From there, you can check with the company to determine if there are any other issues with the make/model and you can see if there is any recourse other than begging the Dr.s to listen to you.
Good luck--and again--sorry if this has already come up....
Good luck with your renewed abx... hope it is not too bad this time.
I just want to ask some questions about your daughter, and please forgive me if I am getting the wrong end of the stick or asking about things you've already clarified.
The main thing I want to ask is, why are the doctors calling this vasovagal syncope? That is really just a fancy word for fainting, the heart slows down and reduces blood supply to the brain, but it doesn't stop. You feel odd for a few moments before this and other people can usually see you are about to "go".
But what you've been describing sounds like cardiac syncope, where the heart malfunctioning is the cause of the problem. This would most commonly be caused by a heart arrhythmia. There's no warning at all, subjectively you have no idea it is going to come, and neither do other people watching you. If the heart monitor detected that her heart stopped, then it is certainly cardiac syncope.
So my next question is, have you got her in front of a good team of electrophysiologists? As in, NOT ordinary cardiologists?
I had 22 episodes of cardiac syncope in the space of one year before my heart surgery and you would not believe the number of cardiologists who failed to diagnose it. They thought I had epilepsy, postural hypotension, panic attacks, anything but ventricular tachycardia! It's amazing how few cardiologist have the humility to admit they are out of their depth in this specialised field.
There are certain hospitals that have dedicated electrophysiology departments, they have a whole lot of specialised monitoring equipment that normal cardiology departments do not have. I only found this out in the nick of time and got my operation done as a matter of urgency.
As I have become a lyme disease evangelist, I am also a bit of a heart arrhythmia evangelist, becaue I was in the dark for years about the right doctors that I really needed to see, and I cannot bear the idea of anyone else suffering what i did, just through not knowing who could actually help them.
BTW the things you said about her insensitivity to anaesthesia applies to me too, I don't know if that is sheer coincidence. When I had my cesarian with a general anaesthetic they commented afterwards that I nearly woke up in the middle of it and they had to use way more anaesthetic than they should need for someone of my weight. And of course there was the famous colonoscopy where the sedative hyped me up so they could not do it, and when they tried again with something stronger, I DID wake up before it was finished and donkey kicked the doctor!
During my heart surgery they gave me various drugs that act on the heart, on top of the anaesthetic. They said I would be getting strange cardiac effects for quite a few days afterwards from all that stuff. It kicked in the next day - I actually felt better than I had done in ages on the day of the operation. I felt so clear headed and energetic, it was like half a day without having lyme disease. So maybe that delayed reaction is fairly typical.
I almost cried to be reminded how bloody good most people feel literally all the time, it is so unfair having this illness. And it was ironic that everyone was being so sympathetic and the nurses were panpering me so much as I had just head my surgery, when most of the time I drag myself about feeling atrocious and nobody cuts me any slack or ever thinks I need taking care of at all.
I just want to ask some questions about your daughter, and please forgive me if I am getting the wrong end of the stick or asking about things you've already clarified.
The main thing I want to ask is, why are the doctors calling this vasovagal syncope? That is really just a fancy word for fainting, the heart slows down and reduces blood supply to the brain, but it doesn't stop. You feel odd for a few moments before this and other people can usually see you are about to "go".
But what you've been describing sounds like cardiac syncope, where the heart malfunctioning is the cause of the problem. This would most commonly be caused by a heart arrhythmia. There's no warning at all, subjectively you have no idea it is going to come, and neither do other people watching you. If the heart monitor detected that her heart stopped, then it is certainly cardiac syncope.
So my next question is, have you got her in front of a good team of electrophysiologists? As in, NOT ordinary cardiologists?
I had 22 episodes of cardiac syncope in the space of one year before my heart surgery and you would not believe the number of cardiologists who failed to diagnose it. They thought I had epilepsy, postural hypotension, panic attacks, anything but ventricular tachycardia! It's amazing how few cardiologist have the humility to admit they are out of their depth in this specialised field.
There are certain hospitals that have dedicated electrophysiology departments, they have a whole lot of specialised monitoring equipment that normal cardiology departments do not have. I only found this out in the nick of time and got my operation done as a matter of urgency.
As I have become a lyme disease evangelist, I am also a bit of a heart arrhythmia evangelist, becaue I was in the dark for years about the right doctors that I really needed to see, and I cannot bear the idea of anyone else suffering what i did, just through not knowing who could actually help them.
BTW the things you said about her insensitivity to anaesthesia applies to me too, I don't know if that is sheer coincidence. When I had my cesarian with a general anaesthetic they commented afterwards that I nearly woke up in the middle of it and they had to use way more anaesthetic than they should need for someone of my weight. And of course there was the famous colonoscopy where the sedative hyped me up so they could not do it, and when they tried again with something stronger, I DID wake up before it was finished and donkey kicked the doctor!
During my heart surgery they gave me various drugs that act on the heart, on top of the anaesthetic. They said I would be getting strange cardiac effects for quite a few days afterwards from all that stuff. It kicked in the next day - I actually felt better than I had done in ages on the day of the operation. I felt so clear headed and energetic, it was like half a day without having lyme disease. So maybe that delayed reaction is fairly typical.
I almost cried to be reminded how bloody good most people feel literally all the time, it is so unfair having this illness. And it was ironic that everyone was being so sympathetic and the nurses were panpering me so much as I had just head my surgery, when most of the time I drag myself about feeling atrocious and nobody cuts me any slack or ever thinks I need taking care of at all.
This whole situation is so frustrating. Two isolated incidents, 8 years apart, the first time after the local anesthetic her heart stopped 3 times, each time for approx. 15 seconds. This time after general anesthetic it stopped 2 times, each for approx 15 seconds. Actually, each group of incidents, she was only on a monitor the last time she lost consciousness, but every time she does it looks identical, so I am comfortable assuming her heart has stopped all 5 times. It starts back up by itself with no intervention and beating perfectly. They ran every test imaginable each time, always normal. Even more strange, to me, is that she does not appear to be sensitive to either type of anesthesia in that she does not go under easily, wakes up very quickly, coherently, and easily.
And her heart doesn't even start "taking it's breaks" immediately. The first time, they cleaned her teeth and took an Xray after pulling the tooth and she didn't go down 'til we were standing at the counter making a follow-up appointment. This time, she was out of surgery and awake by 8:15 and the incidents didn't happen until about 1:30pm. I have been doing a lot of research into this it is rare but not unheard of for a heart to flatline during a vasovagal syncope episode. However it is more normal for it to start back up within 6 -10 seconds rather than 15+. It is supposedly a protective mechanism to protect the heart when it is short on blood. I think this is going to be yet another situation with no clear cut answers.
I got started back on my ABx as soon as we got home in Saturday and I am already feeling the effects. I am going to try to push through this for my 48 hours on call this week because I just don't want to keep stopping and starting. It is going to be very difficult though. I hope I can find a way to manage.
And her heart doesn't even start "taking it's breaks" immediately. The first time, they cleaned her teeth and took an Xray after pulling the tooth and she didn't go down 'til we were standing at the counter making a follow-up appointment. This time, she was out of surgery and awake by 8:15 and the incidents didn't happen until about 1:30pm. I have been doing a lot of research into this it is rare but not unheard of for a heart to flatline during a vasovagal syncope episode. However it is more normal for it to start back up within 6 -10 seconds rather than 15+. It is supposedly a protective mechanism to protect the heart when it is short on blood. I think this is going to be yet another situation with no clear cut answers.
I got started back on my ABx as soon as we got home in Saturday and I am already feeling the effects. I am going to try to push through this for my 48 hours on call this week because I just don't want to keep stopping and starting. It is going to be very difficult though. I hope I can find a way to manage.
I don't blame you at all for your minimal faith in you daughter's cardiologist at this point. I think too many doctors come up with a theory when they are not sure what is happening. Then they stick with that theory as if it were fact, because they don't want to appear incompetent or unsure.
Yes, electronics malfunction! You have lots of reasons to be doubting the doctor's conclusions given what has happened.
How do they explain her heart stopping for 16 seconds?? I have never heard that a vasovagal response can cause cardiac arrest.
There is a great quote from the Sherlock Holmes movie with Robert Downey Jr. that I wish doctors would post up on a wall where they'll see it everyday.
"Never theorize before you have data. Invariably, you end up twisting facts to suit theories, instead of theories to suit facts. "
Yes, electronics malfunction! You have lots of reasons to be doubting the doctor's conclusions given what has happened.
How do they explain her heart stopping for 16 seconds?? I have never heard that a vasovagal response can cause cardiac arrest.
There is a great quote from the Sherlock Holmes movie with Robert Downey Jr. that I wish doctors would post up on a wall where they'll see it everyday.
"Never theorize before you have data. Invariably, you end up twisting facts to suit theories, instead of theories to suit facts. "
I just want to send my very best wishes to you and your daugher and I really hope she recovers well and doesn't have any recurrences of this problem.
I've had heart surgery myself and so I know it's a stressful thing for the whole family.
For what it's worth, my heart arrhythmia gets stirred up by just about every chemical and anaesthetic there is. It may be worth asking to talk to the anaesthetist to find out exactly which anaesthetics they used on her and what after effects they usually have. Just a thought.
I've had heart surgery myself and so I know it's a stressful thing for the whole family.
For what it's worth, my heart arrhythmia gets stirred up by just about every chemical and anaesthetic there is. It may be worth asking to talk to the anaesthetist to find out exactly which anaesthetics they used on her and what after effects they usually have. Just a thought.
I hesitate to jump here shooting my mouth off, because I have NO experience with any of the things you are dealing with ... but that said .... and just reacting as a mother myself ...
I think your comments about the pacemaker poss. malfunctioning are important, and that the thing (and its extra long wire) had shifted after implantation could be considered as a cause of the problems. Perhaps the pacemaker (either due to its position or a possible malfunction) was irritating a particular nerve that was/is causing the pain.
Also, I was told long ago by a sensible MD that I need to be careful and warn docs about my sensitivity to meds in general and anesthetics in particular because I have a very 'clean' system and all meds overwhelm me, so I need lower doses of things like anesthetics. That goes double in children because they are so small. (I was put under for surgery and it took me 4x the usual length of time to wake up.)
There could be several reasons for what is going on, so hold on and keep going -- thinking of you all -- best wishes --
I think your comments about the pacemaker poss. malfunctioning are important, and that the thing (and its extra long wire) had shifted after implantation could be considered as a cause of the problems. Perhaps the pacemaker (either due to its position or a possible malfunction) was irritating a particular nerve that was/is causing the pain.
Also, I was told long ago by a sensible MD that I need to be careful and warn docs about my sensitivity to meds in general and anesthetics in particular because I have a very 'clean' system and all meds overwhelm me, so I need lower doses of things like anesthetics. That goes double in children because they are so small. (I was put under for surgery and it took me 4x the usual length of time to wake up.)
There could be several reasons for what is going on, so hold on and keep going -- thinking of you all -- best wishes --
Several things bother me about this assumption that we should consider this as simply a repetition of the incident in '04. When she was about to go under general anesthetic back then in order to put the pacemaker in, they assured us that local and general anesthetics worked entirely differently and that sensitivity to one didn't transfer to the other. As I can't sleep due mainly to trying to reason this situation out, I looked that info up and came up w/ this from a professor of anesthesiology at the Mayo College of Medicine in Rochester, Minn.
"Two broad classes of pharmacologic agents, local and general, can result in anesthesia. Local anesthetics, such as Novocain, block nerve transmission to pain centers in the central nervous system by binding to and inhibiting the function of an ion channel in the cell membrane of nerve cells known as the sodium channel. This action obstructs the movement of nerve impulses near the site of injection, but there are no changes in awareness and sense perception in other areas.
In contrast, general anesthetics induce a different sort of anesthetic state, one of general insensibility to pain. The patient loses awareness yet his vital physiologic functions, such as breathing and maintenance of blood pressure, continue to function. Less is known about the mechanism of action of general anesthetics compared to locals, despite their use for more than 150 years. The most commonly used general anesthetic agents are administered by breathing and are thus termed inhalational or volatile anesthetics. They are structurally related to ether, the original anesthetic. Their primary site of action is in the central nervous system, where they inhibit nerve transmission by a mechanism distinct from that of local anesthetics."
So, the fact that she has has the same reaction after both a local and a general, and yet she has had lidocaine for dental procedures and stitches from horse accidents, etc. at least 10x in the last 8 years w/o incident bothers me. He is explaining that as it has to be in combination w/ something else like dehydration or something, but I just don't know. They did give her something in an IV to keep her heart rate up until the anesthetic completely wore off. It wasn't atropine, and I can't recall the name, but it must be similar.
About a week after she got it put in, she said it had "moved", so we drove the 200 miles to see what was what and she basically got a pat on the head and told it couldn't have moved out of the little pocket they had cut into the muscle above her solar plexus. She has complained about the thing ever since and every complaint has been blown off, and most of us on this forum can completely identify with that! Well guess what, right after the surgery the surgeon told me that the thing was wedged under her ribs far more than it showed on the Xrays. The surgeon also told me that a lot of patients have complaints w/ pacemakers put it in that location (which in normal for kids) and yet she has never had a complaint taken seriously: daily hiccups from pressure on her diaphragm, rib pain and lung pressure causing shallow breathing/shortness of breath. So my trust in her cardiologist is minimal at this point.
I have never experienced anything like the MS Hug and have never mentioned it to Seville, but she described it exactly like I've read several members of the MS Forum describe it, but she was attributing it to saying her pacemaker was firing. When the put a pacemaker in a growing child, they put in extra lead wire so that as they grow there is enough wire to accommodate the extra height. Apparently her's somehow got kinked as this happened. They acknowledged that her lead was bad, and that SOMETHING was running the battery down, on her pacemaker, but denied that she could feel an electrical shock that would then set off something that apparently feels just like the MS Hug. (If she has this sensation w/o the pacemaker that is really going to open up a whole new line of concern!) I don't see why a short in that lead wire couldn't produce that same sort of sensation. It seems like pure common sense that a bad lead, an unexplained power drain and shock like sensations would add up to a short that would have some unpleasant consequences if it was happening in your chest!
No event has ever shown up on the downloads of her pacemaker, and yet we all know that electronics malfunction, so how do we know that her pacemaker just doesn't record events. The big monitor she was on the 2nd time her heart stopped yesterday didn't record the event although numerous medical personnel saw the flatline and estimate it at around 16 seconds. They even called the manufacturer but there is no way to recover the info. We just got new very expensive event recorders on the locomotives and last week one was telling us we were going 337 miles per hour when we were going about 25 MPH and the GPS portion was telling us we were going up a hill when we were going down, etc.....electronics DO malfunction! I don't think there is going to be an easy or an obvious answer for this situation.
"Two broad classes of pharmacologic agents, local and general, can result in anesthesia. Local anesthetics, such as Novocain, block nerve transmission to pain centers in the central nervous system by binding to and inhibiting the function of an ion channel in the cell membrane of nerve cells known as the sodium channel. This action obstructs the movement of nerve impulses near the site of injection, but there are no changes in awareness and sense perception in other areas.
In contrast, general anesthetics induce a different sort of anesthetic state, one of general insensibility to pain. The patient loses awareness yet his vital physiologic functions, such as breathing and maintenance of blood pressure, continue to function. Less is known about the mechanism of action of general anesthetics compared to locals, despite their use for more than 150 years. The most commonly used general anesthetic agents are administered by breathing and are thus termed inhalational or volatile anesthetics. They are structurally related to ether, the original anesthetic. Their primary site of action is in the central nervous system, where they inhibit nerve transmission by a mechanism distinct from that of local anesthetics."
So, the fact that she has has the same reaction after both a local and a general, and yet she has had lidocaine for dental procedures and stitches from horse accidents, etc. at least 10x in the last 8 years w/o incident bothers me. He is explaining that as it has to be in combination w/ something else like dehydration or something, but I just don't know. They did give her something in an IV to keep her heart rate up until the anesthetic completely wore off. It wasn't atropine, and I can't recall the name, but it must be similar.
About a week after she got it put in, she said it had "moved", so we drove the 200 miles to see what was what and she basically got a pat on the head and told it couldn't have moved out of the little pocket they had cut into the muscle above her solar plexus. She has complained about the thing ever since and every complaint has been blown off, and most of us on this forum can completely identify with that! Well guess what, right after the surgery the surgeon told me that the thing was wedged under her ribs far more than it showed on the Xrays. The surgeon also told me that a lot of patients have complaints w/ pacemakers put it in that location (which in normal for kids) and yet she has never had a complaint taken seriously: daily hiccups from pressure on her diaphragm, rib pain and lung pressure causing shallow breathing/shortness of breath. So my trust in her cardiologist is minimal at this point.
I have never experienced anything like the MS Hug and have never mentioned it to Seville, but she described it exactly like I've read several members of the MS Forum describe it, but she was attributing it to saying her pacemaker was firing. When the put a pacemaker in a growing child, they put in extra lead wire so that as they grow there is enough wire to accommodate the extra height. Apparently her's somehow got kinked as this happened. They acknowledged that her lead was bad, and that SOMETHING was running the battery down, on her pacemaker, but denied that she could feel an electrical shock that would then set off something that apparently feels just like the MS Hug. (If she has this sensation w/o the pacemaker that is really going to open up a whole new line of concern!) I don't see why a short in that lead wire couldn't produce that same sort of sensation. It seems like pure common sense that a bad lead, an unexplained power drain and shock like sensations would add up to a short that would have some unpleasant consequences if it was happening in your chest!
No event has ever shown up on the downloads of her pacemaker, and yet we all know that electronics malfunction, so how do we know that her pacemaker just doesn't record events. The big monitor she was on the 2nd time her heart stopped yesterday didn't record the event although numerous medical personnel saw the flatline and estimate it at around 16 seconds. They even called the manufacturer but there is no way to recover the info. We just got new very expensive event recorders on the locomotives and last week one was telling us we were going 337 miles per hour when we were going about 25 MPH and the GPS portion was telling us we were going up a hill when we were going down, etc.....electronics DO malfunction! I don't think there is going to be an easy or an obvious answer for this situation.
I am so glad to hear your dauter is doing well. I presume they are monitoring her heart rate to ensure it doesn't drop...
Anasthetic is a known trigger for vasovagal syncope. It happens to me when numbing drops are put in my eyes for an exam, but it hasn't happened with any general anasthesia. Go figure.
I get nauseous, sweaty, dizzy, and I have to lie down within a few seconds before I fall down or pass out. It is really unpleasant, and there is nothing I can do to change it. However, I have heard that a shot of atropine before the anasthetic can help prevent the response. It opposes the action of the vagus nerve and helps keep the heart rate up. It is derived from Belladonna, which was used years ago by women to dilate their eyes to look more attractive. I haven't tried it yet, but eventually I will when I need a glaucoma exam.
Anasthetic is a known trigger for vasovagal syncope. It happens to me when numbing drops are put in my eyes for an exam, but it hasn't happened with any general anasthesia. Go figure.
I get nauseous, sweaty, dizzy, and I have to lie down within a few seconds before I fall down or pass out. It is really unpleasant, and there is nothing I can do to change it. However, I have heard that a shot of atropine before the anasthetic can help prevent the response. It opposes the action of the vagus nerve and helps keep the heart rate up. It is derived from Belladonna, which was used years ago by women to dilate their eyes to look more attractive. I haven't tried it yet, but eventually I will when I need a glaucoma exam.
Oh my! So sorry to hear all this that you are going through.
If you don't mind me asking, it stuck in my mind when you posted the other day that the defibrillator had not been triggered in all the years in was in place, so that if this is the first time a problem has occurred, the senior doc may be right about it being the anesthesia.
Have the docs spoken to that aspect?
Take care, we're thinking of you all.
-- The Lyme Gang
If you don't mind me asking, it stuck in my mind when you posted the other day that the defibrillator had not been triggered in all the years in was in place, so that if this is the first time a problem has occurred, the senior doc may be right about it being the anesthesia.
Have the docs spoken to that aspect?
Take care, we're thinking of you all.
-- The Lyme Gang
I really like the Valerian for pain management, especially combined w/ bromelain and cayenne. But it doesn't make me sleepy, unfortunately. It would be nice to be able to sleep easier in an unfamiliar bed w/ polyester bedding in a hot room (anything over 55 degrees :) , but that is just too many negative factors combined for me to do more than doze.
My daughter's surgery went well and she came through recovery very well and even ate lunch. We went back to the hotel after lunch so I could take a shower since we had to be here at 6am. As soon as I got out of the shower, the phone rang telling us she had "fainted" and that we should come back right away. Our hotel was just a few blocks away but by the time we got back to the hospital, there was a crowd pouring out of her room. She had gone down again and her portable monitor said her heart had completely stopped again.....for the first time in 8 years, but as soon as they removed her pacemaker.
Her cardiologist (one of the top in the country) is saying not to worry, that it is vasovagal syncope that is triggered by anesthesia probably combined w/ dehydration, and that we can leave the pacemaker out and just make sure that whenever she has to have anesthetic of any kind she get a med that will increase her heart rate before, during and after. He thinks the next time she will have any episode would most likely be when she has a baby in 5 -10 years. He has three younger doctors who now work w/ him, an attending, a fellow and a resident, that seem a little less sure of that and are still talking about maybe having to put in another pacemaker. Her surgeon and his fellow are also thinking a new pacemaker is still a possibility. However, the surgeon says her cardiologist is very good and he would be willing to trust his judgement in our situation.
She is feeling fine again now that the anesthetic is completely worn off. We are just not exactly sure where to go from here. It will be interesting to see what the younger doctors have to say after they have their meeting w/ the older doctor. He came in from a day off and talked to us before meeting w/ the younger docs and I am wondering how convinced they will be that he is right after they all have their meeting. After the experiences so many of us have had w/ doctors trust does not come easily or blindly, so it will be hard to decide what to do.
I am feeling much better than I was, but I really hate to take such a long break. I hadn't planned on that at all, but I can't deal w/ that kind of agony while being stuck here at the hospital. My LLMD called back today and just said to get back on the ABx as soon as I can.
Thank all of you so much for your prayers, concern, and well wishes!
Valerie
My daughter's surgery went well and she came through recovery very well and even ate lunch. We went back to the hotel after lunch so I could take a shower since we had to be here at 6am. As soon as I got out of the shower, the phone rang telling us she had "fainted" and that we should come back right away. Our hotel was just a few blocks away but by the time we got back to the hospital, there was a crowd pouring out of her room. She had gone down again and her portable monitor said her heart had completely stopped again.....for the first time in 8 years, but as soon as they removed her pacemaker.
Her cardiologist (one of the top in the country) is saying not to worry, that it is vasovagal syncope that is triggered by anesthesia probably combined w/ dehydration, and that we can leave the pacemaker out and just make sure that whenever she has to have anesthetic of any kind she get a med that will increase her heart rate before, during and after. He thinks the next time she will have any episode would most likely be when she has a baby in 5 -10 years. He has three younger doctors who now work w/ him, an attending, a fellow and a resident, that seem a little less sure of that and are still talking about maybe having to put in another pacemaker. Her surgeon and his fellow are also thinking a new pacemaker is still a possibility. However, the surgeon says her cardiologist is very good and he would be willing to trust his judgement in our situation.
She is feeling fine again now that the anesthetic is completely worn off. We are just not exactly sure where to go from here. It will be interesting to see what the younger doctors have to say after they have their meeting w/ the older doctor. He came in from a day off and talked to us before meeting w/ the younger docs and I am wondering how convinced they will be that he is right after they all have their meeting. After the experiences so many of us have had w/ doctors trust does not come easily or blindly, so it will be hard to decide what to do.
I am feeling much better than I was, but I really hate to take such a long break. I hadn't planned on that at all, but I can't deal w/ that kind of agony while being stuck here at the hospital. My LLMD called back today and just said to get back on the ABx as soon as I can.
Thank all of you so much for your prayers, concern, and well wishes!
Valerie
I've had periods of running fevers, but always in the night. I also know another lymie who had years of night sweats and fevers, she used to wake up again adn again absolutely drenched in sweat.
But all I have heard suggests lyme makes fevers nearly always come at night and usually you are normal by day. My son was like that for 2 years - fever every single night but as soon as he had a day fever, we knew it was a cold or flu.
Which is the coinfection that causes lots of monster fevers? Isn't that babesiosis???
As far as pain goes, how much vitamin C are you taking?
When my old injuries adn scars hurt, it always means I am getting Vitamin C deficiency. For the last year, this happens if I take any dose less then a whopping 9,000mg a day!
My GP couldn't believe it but tested me twice and confirmed I really do get through that amount.
If I take less, my cesarian scar itches adn then burns adn goes intense red, like it was when freshly done. My intestine hurts. Apparentlly this is all the result of the connective tissue breaking down . lyme loves to attack it and you need constant vitamin C to keep repairing the cross connections (oh I can't remember the right word!). It's this same connective tissue in the intestine, so obviously that all breaks down with C deficiency and then you don't absorb it proerly (or most other nutrients either).
Vitamin C is used for all this connective tissue, the immune system, and the adrenal glands, whic also have to work major overtime when you have lyme. So it makes sense that we need heaps of it.
If you do decide to increase your dose, make sure you buy BUFFERED or you'll almost certainly get diarrhoea.
But all I have heard suggests lyme makes fevers nearly always come at night and usually you are normal by day. My son was like that for 2 years - fever every single night but as soon as he had a day fever, we knew it was a cold or flu.
Which is the coinfection that causes lots of monster fevers? Isn't that babesiosis???
As far as pain goes, how much vitamin C are you taking?
When my old injuries adn scars hurt, it always means I am getting Vitamin C deficiency. For the last year, this happens if I take any dose less then a whopping 9,000mg a day!
My GP couldn't believe it but tested me twice and confirmed I really do get through that amount.
If I take less, my cesarian scar itches adn then burns adn goes intense red, like it was when freshly done. My intestine hurts. Apparentlly this is all the result of the connective tissue breaking down . lyme loves to attack it and you need constant vitamin C to keep repairing the cross connections (oh I can't remember the right word!). It's this same connective tissue in the intestine, so obviously that all breaks down with C deficiency and then you don't absorb it proerly (or most other nutrients either).
Vitamin C is used for all this connective tissue, the immune system, and the adrenal glands, whic also have to work major overtime when you have lyme. So it makes sense that we need heaps of it.
If you do decide to increase your dose, make sure you buy BUFFERED or you'll almost certainly get diarrhoea.
You could wear a mask in the hospital, just in case you do have something contagious. I read a summary of a doctor who spoke at a recent Lyme patient conference and she said if someone with Lyme says they never get sick (colds, viruses, et.al.), it could also mean that their immune system is too suppressed to put up a fight. The viruses collecting in the body contribute to feeling crummy.
I made a mistake on my calendar and got one of my shots a day late. The day before, I felt pretty bad. I hadn't felt that fuzzy or 'out of it' in a while. I was irritable and couldn't concentrate very well. Shortly after my shot, I perked back up again. I was amazed at how quickly I felt more symptoms as my abx level dropped, and then felt better after it went back up. I wonder if that is happening to you, too.
One other thought... My PA told me that Lyme likes to go to scar tissue (another low oxygen place). That could explain why your old injuries hurt.
I hope your daughter's procedure goes smoothly!
I made a mistake on my calendar and got one of my shots a day late. The day before, I felt pretty bad. I hadn't felt that fuzzy or 'out of it' in a while. I was irritable and couldn't concentrate very well. Shortly after my shot, I perked back up again. I was amazed at how quickly I felt more symptoms as my abx level dropped, and then felt better after it went back up. I wonder if that is happening to you, too.
One other thought... My PA told me that Lyme likes to go to scar tissue (another low oxygen place). That could explain why your old injuries hurt.
I hope your daughter's procedure goes smoothly!
Thank you so much for your quick response! I really like how active this forum is.
You made me feel better about going in w/ my daughter. I will do as you say and hope for the best. I really DON'T feel like I have something contagious so surely I will be okay.
It is definitely not snowing, lol :) I am broiling hot and experiencing some of that increased sweating you mentioned. What good timing, hahaha. Now so long as the staff doesn't think I look like I'm the one who needs to be in the hospital hopefully I should be good to go. I ended up taking Valerian capsules for the pain thinking they would knock me out, but instead I seem to be wide awake, but at least I can tolerate the pain at the moment. I read what you'vegottobekidding wrote about taking a Valerian tablet shortly after I took 2 capsules. I might have only taken one had I read that beforehand :)
You made me feel better about going in w/ my daughter. I will do as you say and hope for the best. I really DON'T feel like I have something contagious so surely I will be okay.
It is definitely not snowing, lol :) I am broiling hot and experiencing some of that increased sweating you mentioned. What good timing, hahaha. Now so long as the staff doesn't think I look like I'm the one who needs to be in the hospital hopefully I should be good to go. I ended up taking Valerian capsules for the pain thinking they would knock me out, but instead I seem to be wide awake, but at least I can tolerate the pain at the moment. I read what you'vegottobekidding wrote about taking a Valerian tablet shortly after I took 2 capsules. I might have only taken one had I read that beforehand :)
Here's a short list of various Herx symptoms, which are different in everyone:
"The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling."
The only thing missing from this list is the kitchen sink.
Your immune system is and has been on overload from Lyme+, so chances are you're not incubating anything else bec. your immune system is fighting hard against everything. I never got the sniffles or the usual seasonal garbage when I had Lyme, bec. my immune system was hyperalert.
I would stay with your daughter, and ask the hospital for a mask to wear because 'I think I might be coming down with a cold or something.' I am very cautious about exposing people to bugs I might have, and I would be totally comfy with what I suggest here. Just stay away from other people as much as possible, and your conscience should be clear.
Let us know how it goes, okay? At least it's not snowing, huh.
"The most common symptoms reported include increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling."
The only thing missing from this list is the kitchen sink.
Your immune system is and has been on overload from Lyme+, so chances are you're not incubating anything else bec. your immune system is fighting hard against everything. I never got the sniffles or the usual seasonal garbage when I had Lyme, bec. my immune system was hyperalert.
I would stay with your daughter, and ask the hospital for a mask to wear because 'I think I might be coming down with a cold or something.' I am very cautious about exposing people to bugs I might have, and I would be totally comfy with what I suggest here. Just stay away from other people as much as possible, and your conscience should be clear.
Let us know how it goes, okay? At least it's not snowing, huh.
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