Aa
I need answers!
Hello! I can't take it anymore. My symptoms just don't make sense and most don't fit with Lyme ( and I know that there aren't any "normal" symptoms of Lyme so please don't tell me that). The antibiotic has done nothing to help, I've been on it over 3 weeks.
Most of my symptoms (well my only symptoms) are dizziness, head pressure and jaw pain. I've learned that when I'm chewing, all this goes away. So the past week, I've just chewed gum all day long and all my symptoms went away and I felt like a million bucks! Is that normal??
I always thought my symptoms had something to do with the right side of my neck and back being really messed up after being hit head on by a drunk driver last year. Because only the right side of my neck and head (such as pressure in my right temple, pain in right side of jaw) have become affected during this whole Lyme thing. I was in physical therapy, chiropractor visits, acupuncture, pain management for 7 months after the accident. But then, why after a whole year would I start getting dizzy?
Anyone have any ideas on this? I'm desperate.
Most of my symptoms (well my only symptoms) are dizziness, head pressure and jaw pain. I've learned that when I'm chewing, all this goes away. So the past week, I've just chewed gum all day long and all my symptoms went away and I felt like a million bucks! Is that normal??
I always thought my symptoms had something to do with the right side of my neck and back being really messed up after being hit head on by a drunk driver last year. Because only the right side of my neck and head (such as pressure in my right temple, pain in right side of jaw) have become affected during this whole Lyme thing. I was in physical therapy, chiropractor visits, acupuncture, pain management for 7 months after the accident. But then, why after a whole year would I start getting dizzy?
Anyone have any ideas on this? I'm desperate.
Everyone is a bit different in how and where they hurt, so be sure to ask your MD.
If you are particularly concerned, then call the doc's office and leave a message describing your symptoms -- where it hurts, how long it's been hurting, whether it comes and goes -- and ask if you should be seen before your next regular appointment.
Hope it's better soon!
If you are particularly concerned, then call the doc's office and leave a message describing your symptoms -- where it hurts, how long it's been hurting, whether it comes and goes -- and ask if you should be seen before your next regular appointment.
Hope it's better soon!
Is it normal to get headaches with Lyme and doxy? I have been getting more sinus type headaches. Always behind my right eye and right cheekbone and my right gums hurt. I've had these headaches for years but seem to be getting them more often . Ironically, when I get this type of headache, my dizziness is way less prominent. Thanks!
I had that happen to me but if its not dark tarry color then it was most likely from a hemorrhoid. My doc said it more fiber and fruit which I did and it passed.
"I don't know if I should call my normal PCP. She doesn't even know I'm being treated by my LLMD for Lyme. I don't know what to tell her.. "
I'm not in favor of not telling a doctor everything (grin)----- but perhaps just telling her what you see in your stools would be enough reason for her to order a stool test? Of course if she asks what are you taking?----- well, that's a dilemma. I don't honestly know what I would say in that instance.
I personally feel a colonoscopy is bit unwarranted at this point. But that decision is up to you. I probably wouldn't. But that's just me. :)
I'm not in favor of not telling a doctor everything (grin)----- but perhaps just telling her what you see in your stools would be enough reason for her to order a stool test? Of course if she asks what are you taking?----- well, that's a dilemma. I don't honestly know what I would say in that instance.
I personally feel a colonoscopy is bit unwarranted at this point. But that decision is up to you. I probably wouldn't. But that's just me. :)
Thanks for the comment. She mentioned that we could do a stool test but that it would take a few days to get the paperwork in order so I don't live close to my LLMD.
I did, ummm pick apart, the stool last night. It did seem to only be on the outside. I replayed everything I ate in the past few days and nothing is of that color.
The doc's assistant said they could send me for a colonoscopy (spelling?) . But I feel about 99.9% positive that this is from the doxy and that send me for that would just be torture.
I don't know if I should call my normal PCP. She doesn't even know I'm being treated by my LLMD for Lyme. I don't know what to tell her.. "all my tests came back negative but I've been taking doxy for a month now". She's going to think I'm nuts!
I did, ummm pick apart, the stool last night. It did seem to only be on the outside. I replayed everything I ate in the past few days and nothing is of that color.
The doc's assistant said they could send me for a colonoscopy (spelling?) . But I feel about 99.9% positive that this is from the doxy and that send me for that would just be torture.
I don't know if I should call my normal PCP. She doesn't even know I'm being treated by my LLMD for Lyme. I don't know what to tell her.. "all my tests came back negative but I've been taking doxy for a month now". She's going to think I'm nuts!
O.K.---- dark maroon. Depending on what your doctor says----- there's still a possibility that it's a food that you ate. But you said the blood was just on the outside of the stool?
Yeah, TMI for the faint of heart---- so stop reading,those of you that are. :)
Are you sure the blood is just on the outside? (That might mean dissecting one. Ugh)
I just looked at the package insert for doxy and blood in the stool is listed but down in the 'possibles'. (Black tarry blood IS a definite sign of something that needs to be looked after right away but that's a different look.)
Although I don't want to tell you that everything's o.k.-----I've had doctor's tell me, when I first was on antibiotics and read those package inserts religiously, that a lot of those were CYA statements by the manufacturer.
I've found, over long experience, to read the package inserts but to keep a calm mindset about all the warnings.
So----- what do YOU do? Perhaps a visit to a GI doctor? Perhaps seeing your PCP and asking him/her to do a stool test? I'm at a loss to say what it could be except for the possibility that you're seeing blood from a hemorrhoid that is a bit older then 'fresh'. That's a wild guess---- and not to be considered as fact.
Keep after your doctors. You do need to get this resolved.
Yeah, TMI for the faint of heart---- so stop reading,those of you that are. :)
Are you sure the blood is just on the outside? (That might mean dissecting one. Ugh)
I just looked at the package insert for doxy and blood in the stool is listed but down in the 'possibles'. (Black tarry blood IS a definite sign of something that needs to be looked after right away but that's a different look.)
Although I don't want to tell you that everything's o.k.-----I've had doctor's tell me, when I first was on antibiotics and read those package inserts religiously, that a lot of those were CYA statements by the manufacturer.
I've found, over long experience, to read the package inserts but to keep a calm mindset about all the warnings.
So----- what do YOU do? Perhaps a visit to a GI doctor? Perhaps seeing your PCP and asking him/her to do a stool test? I'm at a loss to say what it could be except for the possibility that you're seeing blood from a hemorrhoid that is a bit older then 'fresh'. That's a wild guess---- and not to be considered as fact.
Keep after your doctors. You do need to get this resolved.
Hey I just e-mailed you.
The blood is NOT bright red. The stool is very dark and the blood is like a dark maroon color. For anyone else reading, the doc said to "wait and see" and that it's not related to the doxy but I've never had this before in my life until I started the doxy. Plus the paperwork with the doxy says to immediately call your doc if bloody stools appear so it MUST have happened at some point to other people if they include that on there.
The blood is NOT bright red. The stool is very dark and the blood is like a dark maroon color. For anyone else reading, the doc said to "wait and see" and that it's not related to the doxy but I've never had this before in my life until I started the doxy. Plus the paperwork with the doxy says to immediately call your doc if bloody stools appear so it MUST have happened at some point to other people if they include that on there.
Of course---- get in touch with your doctor but the blood, if it's fresh (bright red) MAY be the result of hemorrhoids. (They can be internal, not external.)
If it's not hemorrhoids-----then your doctor will know what should be done next.
If it's hemorrhoids they may need 'fixing' (attended to) but they may not be a side effect of the doxy.
Keep us posted as to what your doctor said, please?
If it's not hemorrhoids-----then your doctor will know what should be done next.
If it's hemorrhoids they may need 'fixing' (attended to) but they may not be a side effect of the doxy.
Keep us posted as to what your doctor said, please?
Hello everyone.
Thanks for the responses. Over the weekend, I started having (and sorry for the grossness) bloody stools. I am completely a wreck. My stool is normal stool, not diarrhea but it is coated in what looks like a layer of blood. I am terrified. This has never happened to me before. I read the side effects of doxy and it did say to call the doc immediately if you have bloody stools. I am calling my LLMD as soon as he opens today. But why would this start a month after being on doxy?? Has this happened to anyone else? I have a very sensitive stomach to begin with... have had problems with it since I was a teenager due to an eating disorder. But I've been taking probiotics with the doxy (about 70 billion...the kind you refrigerate) and have been feeling pretty good on it all this time. As I stated above, my symptoms are still present, the doxy didn't really relieve any of my dizziness, jaw pain, or head pressure. If it IS Lyme, I know that I need to stay on the antibiotic so I'm scared of what to do now.
Thanks for the responses. Over the weekend, I started having (and sorry for the grossness) bloody stools. I am completely a wreck. My stool is normal stool, not diarrhea but it is coated in what looks like a layer of blood. I am terrified. This has never happened to me before. I read the side effects of doxy and it did say to call the doc immediately if you have bloody stools. I am calling my LLMD as soon as he opens today. But why would this start a month after being on doxy?? Has this happened to anyone else? I have a very sensitive stomach to begin with... have had problems with it since I was a teenager due to an eating disorder. But I've been taking probiotics with the doxy (about 70 billion...the kind you refrigerate) and have been feeling pretty good on it all this time. As I stated above, my symptoms are still present, the doxy didn't really relieve any of my dizziness, jaw pain, or head pressure. If it IS Lyme, I know that I need to stay on the antibiotic so I'm scared of what to do now.
A Lyme specific band on a Western Blot would definitely change my answer...
Lyme can cause jaw pain. I haven't heard yet of someone with Lyme where this was the only symptom, but then Lyme refuses to stay in a neat little box of predictability. I have read of examples where a less common symptom was the first and only symptom for weeks, and Lyme wasn't suspected until other symptoms finally showed up. (My first symptom was going hoarse and completely losing my voice. But then two days later, the fatigue and fever hit me like a truck.)
Definitely let us know what band you showed. I'd stay on the Doxy, too.
Lyme can cause jaw pain. I haven't heard yet of someone with Lyme where this was the only symptom, but then Lyme refuses to stay in a neat little box of predictability. I have read of examples where a less common symptom was the first and only symptom for weeks, and Lyme wasn't suspected until other symptoms finally showed up. (My first symptom was going hoarse and completely losing my voice. But then two days later, the fatigue and fever hit me like a truck.)
Definitely let us know what band you showed. I'd stay on the Doxy, too.
I think that's the wise course. Please let us know when you do get the copy of the WB.
I'm going to stay on the doxy regardless...don't want to take any chances. I meet with the doc November 12 and then figure out what's going on then. I will ask more questions then and ask for a copy of the western blot too.
If you can get a copy of your WB test then you can tell us just what band was positive. It does make a difference.
At this link:
http://www.medhelp.org/posts/Lyme-Disease/Western-Blot/show/1995158
--- a member posted
"4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83 "
If that information is correct AND you have one of those bands listed as pos. then you do indeed have Lyme.
Please let us know.
I personally feel that your doctor is correct---- but that isn't what most insurance companies feel. :(
At this link:
http://www.medhelp.org/posts/Lyme-Disease/Western-Blot/show/1995158
--- a member posted
"4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83 "
If that information is correct AND you have one of those bands listed as pos. then you do indeed have Lyme.
Please let us know.
I personally feel that your doctor is correct---- but that isn't what most insurance companies feel. :(
Well the doc said that one band came back positive on the western blot and they treat anyone with any kind of positive as having Lyme. I'm not sure what band was positive.
Elleon---- didn't you test positive on a Western Blot? I thought I'd read that in your posts
I would be surprised if you did have Lyme. I've also heard a friend with TMJ say she can't chew gum because it hurts too much. I wonder if you have some problem with a tendon or muscle or combo of such that connects your jaw to your head. Maybe it's a delayed reaction from your accident or a small injury that has been exacerbated over time. You need to see a doc knowledgeable with the head, neck, and jaw. Could be a TMJ doc or a head & neck specialist or an orthopedist.
I have and had a TMJ problem most of my life but it only bothered me after I was a teen--- and I know I didn't have Lyme then!
After I became aware that it was exacerbated by clenching my teeth I was able to eventually stop doing that, even during sleep. Don't ask me how-----but I went to bed with the intention of NOT clenching my teeth and eventually it seeped into my subconscious and I stopped doing it. I can't say that I know everyone can do that---- I just know I did.
To stop clenching during the day still demands a lot of attention---- but it IS doable. For at least most of the time.
People CAN have bona fide TMJ problems AND have bona fide Lyme and they aren't always related to one another. If I'd gotten Lyme when I was a teen it would have easy to imagine that Lyme caused my TMJ problem. Lyme likes synovial fluid so TMJ problems that start AFTER Lyme could be caused by Bb.
One name for TMJ problems is crepitus---IF it's accompanied by popping and clicking noises.
Here is a clip that has some good explanations for crepitus/TMJ malfunction.
"You have a TMJ disorder and grinding and clenching does NOT cause it although you may have been told that it does by those who do not understand the condition nor know how to treat it. Pain is usually not present in the early stages but will come over time when myospasms develop and trigger points refer pain to different parts of the body. The most common symptom in females are headaches.
The clicking/popping is due to a structure that is part of the jaw joint called the articular disk being forced out of place when the teeth are together and going back into place when the mouth is opened. This constant dislocation and going back into place of the articular disk will cause stress and strain in muscles and that will lead to formation of trigger points and referred pain. This is called a musculoskeletal disorder and may occur early or late after TMJ develops and will depend on how well your body is able to handle stress and trauma. Some TMJ sufferers never have pain while others are debilitated by it and varies from individual to individual.
TMJ disorders never go away and always gets worse over time until it is corrected. The stage you are in now is called reciprocal clicking and in time it will worsen to intermittent locking. When the disk binds or is unable to go back into joint, it acts like a doorstop to prevent the mouth from opening more than 3 fingers wide. When the disk pops back into place, either on its own or with a little help from you by moving your jaw around, the mouth will then be able to open wide again. If left untreated, intermittent locking will worsen to a closed lock without reduction. This stage is extremely difficult to treat and is characterized by the disappearance of clicking and popping sounds because the disk can no longer go back into joint (hence no more noise).
If you want to have your TMJ disorder fixed, you will need to find a dentist who knows how to treat it (not all do) but avoid oral surgeons and traditional orthodontists, trust me. TMJ is easiest to fix when the jaw is still clicking/popping and this can be done conservatively without surgery. [...] The most common causes of TMJ are deep over bites, bad bites, Class II jaws (retruded/receded chins), a history of head trauma, and having premolars extracted when braces were done, especially in females.
Treatment of TMJ disorders is not taught in dental schools so be wary of any advice given by any dental student. Most of their advice are based on myths and antiquated concepts that are erroneous. Proper diagnosis and treatment of temporomandibular joint disorders can only be learned by attending advanced seminars after graduating from dental school. Dentists (and dental students) who do not know how to treat TMJ will often recommend wearing a mouthguard which is basically a flat plane appliance. You should be aware that if you follow that harmful advice you can lock your condyles out and make your condition much worse. A flat plane splint should NOT be worn by a TMJ patient with a clicking jaw or a closed lock will result."
Sorry I can't give the link due to rules on MH, or so I've been told----- but not sure it that applies to this link.
I'm not sure that a functional orthodontist is the only way to help but it may be one route.
After I became aware that it was exacerbated by clenching my teeth I was able to eventually stop doing that, even during sleep. Don't ask me how-----but I went to bed with the intention of NOT clenching my teeth and eventually it seeped into my subconscious and I stopped doing it. I can't say that I know everyone can do that---- I just know I did.
To stop clenching during the day still demands a lot of attention---- but it IS doable. For at least most of the time.
People CAN have bona fide TMJ problems AND have bona fide Lyme and they aren't always related to one another. If I'd gotten Lyme when I was a teen it would have easy to imagine that Lyme caused my TMJ problem. Lyme likes synovial fluid so TMJ problems that start AFTER Lyme could be caused by Bb.
One name for TMJ problems is crepitus---IF it's accompanied by popping and clicking noises.
Here is a clip that has some good explanations for crepitus/TMJ malfunction.
"You have a TMJ disorder and grinding and clenching does NOT cause it although you may have been told that it does by those who do not understand the condition nor know how to treat it. Pain is usually not present in the early stages but will come over time when myospasms develop and trigger points refer pain to different parts of the body. The most common symptom in females are headaches.
The clicking/popping is due to a structure that is part of the jaw joint called the articular disk being forced out of place when the teeth are together and going back into place when the mouth is opened. This constant dislocation and going back into place of the articular disk will cause stress and strain in muscles and that will lead to formation of trigger points and referred pain. This is called a musculoskeletal disorder and may occur early or late after TMJ develops and will depend on how well your body is able to handle stress and trauma. Some TMJ sufferers never have pain while others are debilitated by it and varies from individual to individual.
TMJ disorders never go away and always gets worse over time until it is corrected. The stage you are in now is called reciprocal clicking and in time it will worsen to intermittent locking. When the disk binds or is unable to go back into joint, it acts like a doorstop to prevent the mouth from opening more than 3 fingers wide. When the disk pops back into place, either on its own or with a little help from you by moving your jaw around, the mouth will then be able to open wide again. If left untreated, intermittent locking will worsen to a closed lock without reduction. This stage is extremely difficult to treat and is characterized by the disappearance of clicking and popping sounds because the disk can no longer go back into joint (hence no more noise).
If you want to have your TMJ disorder fixed, you will need to find a dentist who knows how to treat it (not all do) but avoid oral surgeons and traditional orthodontists, trust me. TMJ is easiest to fix when the jaw is still clicking/popping and this can be done conservatively without surgery. [...] The most common causes of TMJ are deep over bites, bad bites, Class II jaws (retruded/receded chins), a history of head trauma, and having premolars extracted when braces were done, especially in females.
Treatment of TMJ disorders is not taught in dental schools so be wary of any advice given by any dental student. Most of their advice are based on myths and antiquated concepts that are erroneous. Proper diagnosis and treatment of temporomandibular joint disorders can only be learned by attending advanced seminars after graduating from dental school. Dentists (and dental students) who do not know how to treat TMJ will often recommend wearing a mouthguard which is basically a flat plane appliance. You should be aware that if you follow that harmful advice you can lock your condyles out and make your condition much worse. A flat plane splint should NOT be worn by a TMJ patient with a clicking jaw or a closed lock will result."
Sorry I can't give the link due to rules on MH, or so I've been told----- but not sure it that applies to this link.
I'm not sure that a functional orthodontist is the only way to help but it may be one route.
Thanks for the reply. I am also not sure whether to think it is TMJ or Lyme. My mom's friend has Lyme also and suffers severe TMJ like symptoms so I know that it COULD be Lyme.. just don't understand the symptoms being alleviated while chewing.
Yes, I am very scared to go to a dentist for possible TMJ because I have heard some bad stories about treatments for it. I'm not sure what to do. I do notice that I clench my jaw very tightly at all times. I have been really forcing myself to concentrate on not doing that... but I'll wake up in the middle of the night and my jaw will be clenched so tightly so I know I'm doing it in my sleep too. Not good.
I am not a patient person lol so waiting to hopefully feel better on the antibiotics is driving me nuts!
Yes, I am very scared to go to a dentist for possible TMJ because I have heard some bad stories about treatments for it. I'm not sure what to do. I do notice that I clench my jaw very tightly at all times. I have been really forcing myself to concentrate on not doing that... but I'll wake up in the middle of the night and my jaw will be clenched so tightly so I know I'm doing it in my sleep too. Not good.
I am not a patient person lol so waiting to hopefully feel better on the antibiotics is driving me nuts!
I have never heard of anyone suffering with Lyme that got better by chewing gum so maybe cave is right. I would also say 3 weeks is too short a time to expect any positive results from your meds if it is Lyme.
That MIGHT be TMJ problems. But I certainly can't tell. It also MIGHT be Lyme disease messing with the cartilage there.
Here is something to do that is non-invasive and might help with the symptoms, whatever is causing it.
This is what I remember the dental office I worked in doing for people with TMJ problems. (It's not to 'cure' but to relieve symptoms----- and some have really severe symptoms.)
First put an ice pack on the affected TMJ for about 5 minutes
Then put a damp hand towel that's been heated (hot water or microwave) over the muscle/above and below the jaw joint.
BE VERY CAREFUL THE TOWEL IS NOT TOO HOT!
Reheat/warm as needed so there will be a total heating time of 15 minutes.
Chewing gum is is usually contraindicated if there is a TMJ problem. So, if chewing gum actually relieves your pain----- dunno. Shrug.
Be very careful if you go to a dentist to have your TMJ (if that's what it is) evaluated! Too many dentists don't know what they should do. One dentist I worked for was very conservative. A different one wasn't and did more damage than good!
About Lyme----- three weeks is a really short time to expect improvement. Period. :) Although some have improved in that short a time but that might be short-lived.
Here is something to do that is non-invasive and might help with the symptoms, whatever is causing it.
This is what I remember the dental office I worked in doing for people with TMJ problems. (It's not to 'cure' but to relieve symptoms----- and some have really severe symptoms.)
First put an ice pack on the affected TMJ for about 5 minutes
Then put a damp hand towel that's been heated (hot water or microwave) over the muscle/above and below the jaw joint.
BE VERY CAREFUL THE TOWEL IS NOT TOO HOT!
Reheat/warm as needed so there will be a total heating time of 15 minutes.
Chewing gum is is usually contraindicated if there is a TMJ problem. So, if chewing gum actually relieves your pain----- dunno. Shrug.
Be very careful if you go to a dentist to have your TMJ (if that's what it is) evaluated! Too many dentists don't know what they should do. One dentist I worked for was very conservative. A different one wasn't and did more damage than good!
About Lyme----- three weeks is a really short time to expect improvement. Period. :) Although some have improved in that short a time but that might be short-lived.
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