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Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/14/2009 12:47 AM (GMT -6)   
Got them all the time before treatment, along with cracks on the sides of my mouth. Then upon starting treatment they got better. I seem to get them now only when I herx bad. Any thoughts?

Cmacaran
Regular Member


Date Joined Aug 2008
Total Posts : 105
   Posted 11/14/2009 12:54 AM (GMT -6)   
Other than the stuff you buy at the drug store, I have read vitamin B and immune support supplements help with canker sores. I also try not to get chapped lips or put my lips under stress. But I haven't solved the problem either.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 2:51 AM (GMT -6)   
I had a terrible problem with canker sores before I did a mouth overhaul. I had all of my metal fillings replaced, and have no metal lined crowns anymore. I use a sonicare toothbrush, floss, a water pik, and I rinse with a tea tree mouthwash. This also seems to help with tongue soreness and swelling.

Rose
I have Lyme; it doesn't have me.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/14/2009 7:48 AM (GMT -6)   
Rose-
You sound like me. I do all of that stuff, too. No metal fillings etc. I really think the canker thing is a Lyme thing. No one else gets them like me. It actually hurts to talk. It is worse for me when taking Biaxin for some reason. I went 4 months without any and as soon as I started biaxin...WHAM

How many more things do we have to suffer with.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 12:42 PM (GMT -6)   
Lovelabs,

That's interesting about the possible correlation between Biaxin and the sores. I haven't had any sores since I've been on babesia meds - don't know if that is a coincidence or not. This is all so complicated. I've never had, nor have I known anyone who had a disease that required the patient to learn so much about medicine just to get through it.

As far as how many things we have to suffer with, to me it seems the list of possibilities is endless. I just march along with the conviction that nothing more will happen, and when it does, I add it to my list of symptoms and march ignorantly along again believing nothing more will happen.

Rose
I have Lyme; it doesn't have me.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/14/2009 4:54 PM (GMT -6)   
Rose,
You are right. It is crazy how much we have to research about all of our crazy symptoms. Lyme just screws you up and it is non stop crap that we have to deal with. I can feel fine(well Lyme fine) one day and then wake up with a stiff neck, canker sores, all the crappy pain...like it changes so quick.crazy. I try to enjoy my good moments. I don't have many and I have been in treatment for a year! Maybe this is as good as it gets!

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/14/2009 8:37 PM (GMT -6)   
Lovelabs,

I do not think that this is not as good as it gets for you. I have a friend who has been in treatment for a year and 5 months, and just now she is starting to feel better. Have faith that you are getting there. When I started this whole Lyme journey in September my bargain with fate was that if all treatment did was buy me more good days, that was enough. Now that I have more good days, I'm getting greedy. I want mostly good days, I want to get better, I want to be able to work again, I want to be normal. I have to remind myself that just a couple of months ago I hurt all over all of the time, so much that I didn't even leave the house anymore. Now I can do lots of things. It's helpful to read your comment "I try to enjoy my good moments." That reminds me to do so too.

Rose
I have Lyme; it doesn't have me.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/15/2009 12:08 AM (GMT -6)   
rose,
thanks for the encouraging words. Besides my husband and my LLMD no one even asks me how I am doing anymore. I think they think because I'm not in the hospital or anything I must be fine. My sister battled cancer.(she is fine now). She didn't have to worry about a meal for a whole year. She got gifts in the mail, comfy pillows and quilts. And beautiful cards from friends and coworkers. Since the beginning of my hell 2 years ago I never got a meal, a card, nothing. Besides my husband who has been WONDERFUL throughout this journey.

People that I thought would be there for me were not. I learned a lot about my so called friends in this process. So not only does it suck to have Lyme, but it sucks more that most people don't really care. A neighbor of mine recently got infected. She told my husband last week she felt so bad for me. She now understands. She said she has never been in so much pain in her life.

I know it is a hard disease to understand. And so many people have been told by docs that it isn't serious. But I still think the lack of compassion sucks. So now I am not only still sick a year after treatment, but I think a lot of people around me suck. I have become pretty anti social since the beginning of this. Most of the time I'd rather be alone. I just need to thank god for my supportive hubby and truely wonderful doctor. Without them I think I would never leave my room. And I have 2 young kids. Sad isn't it? Thank you Rose for making me feel better. Funny how someone you never met and don't even know where they live can make you feel better than the ones you see each day. Hope better days are ahead for you, too.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/15/2009 1:29 AM (GMT -6)   
Lovelabs,

We're better able to help each other because we know first hand how it feels. Your post made me feel better, too. You are so right, and I love how you put it, that we don't get the empathy that people with other diseases get. No matter where we turn, it's the same story. Misunderstood. Minimized. No concern or compassion. Most of us look fine. We reach through the pain to do what we need to do, and nobody knows the hell we live in. Lyme is a battle on every front. I think your word "sucks" pretty much sums it up. Makes me tired just to think about it.

I'm really glad you have a supportive husband and a great doctor, me too, and it makes all the difference. I'm also glad we have this forum. Going through this alone would be unbearable. There ARE better days ahead for us.

Take care,

Rose
I have Lyme; it doesn't have me.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/15/2009 9:57 AM (GMT -6)   
Thanks Rose.

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 11/15/2009 12:38 PM (GMT -6)   
Wow, do I know how you feel, Lovelabs!  Unfortunately for me, I've had other "invisible" chronic (life-long, never gonna get rid of) illnesses before I got Lyme's, so I'm over the lack of empathy from people around me.  My first started in my late teens and got much worse when I was in my mid-20's, and I was just bewildered and so very hurt that no one around me would even acknowledge that I was going through something horrible and potentially very life-changing.  The only ones who would ever even ask or acknowledge just seemed to be quizzing me in a way that left me feeling that they either didn't believe me or they were downplaying it for me "because it couldn't be all that bad, after all you're able to...(fill in the blank)".  I'm NOT a person who even talks about my health problems unless necessary (have to leave work for an appointment and you're better off saying the real reason because they will speculate and gossip anyway and who knows what they'll say if you don't tell them).
 
It has taken me a very, very long time (20 years) to come to grips with the reality that people only have so much emotional excess to share with others.  We have ourselves, our immediate family, our extended family, our close friends, and then our other friends, co-workers, and acquaintances.  And then strangers who we strike up a conversation with at times.  When you look at how many people each of us has in our lives, we are just spread so thin.  It's very easy and takes very little effort on our part to have empathy for something obvious like cancer, a broken bone, heart problems, etc.  It actually requires extremely little effort on our part to offer a word or gesture of compassion for these patients, because without really thinking about it or digesting it in any way, you just know it's bad and you react.  That's all it requires, and we feel good about ourselves for giving of ourselves to the poor person who is suffering.  And then we are done.  We feel we did something and we can resume our own issues/problems, etc.  You'd seem cold if you didn't react.  But in an invisible illness, and there are MANY, not just Lyme's, where the other person has to actually put some effort into even hearing what we are saying, understanding it to some degree, and then digesting what you are saying.  They don't have a clue what you are going through (and seriously don't want to hear about it every time they see you, and really don't want to hear all the gory details), and really don't have the emotional bank of excess to worry about someone else's problems because they have their own "invisible" issues (maybe health, emotional, family, whatever).  They don't mean to be cold and uncaring, they just don't have anything left to give as far as taking the time and effort to digest it, think it through, and even knowing WHAT to offer.  And at the same time, they have their own issues, some quite weighty that WE are unaware of, and they probably think whatever it is that we are going through equals nothing more than the empathy-worthiness of yeast infection, a bad headache, tonsilitis, etc.  Yeah, it sucks, but we all got something, and I'm not telling you about mine, so why are you telling me about yours?  It's like someone telling you they got a new haircut and they are really excited about it or worried it's too drastic of a change, and you really didn't even notice they got a haircut or that there is any change from what you remembered they had...it passes quickly through your mind, you possibly remember to offer a compliment or a word of kindness about it, and you don't have to digest it or drain your emotional bank in any way, shape, or form, and it's the last thing on your mind.   Ever.  If it's not obviously right in their face requiring some type of response or reaction, they truly have their own inner invisibilities to deal with.
 
I read somewhere that even cancer has a 4 month limit on other people's emotional involvement - we each have only so much to give.  We have to think about that when we deal with other people too.  How many people that we are expecting to show us empathy for what we are going through are going through their own emotional or physical hell that WE are not acknowledging or asking about or involving ourselves with? 
 
I hope this helps.  It took me a long time to get there, but now that I understand it, it is what gets me through on my own.    

thePlum13
New Member


Date Joined Nov 2009
Total Posts : 5
   Posted 11/15/2009 5:09 PM (GMT -6)   
While  I was on Biaxin I had mouth sores esp. on my tongue.  As I am a dental hygienist I assumed it was yeast from the abx so I got a Rzx Nystatin rinse that kept it under control but never really went away until off the abx.  For my lips I had to keep them coated with Carmex.
Hope this helps

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/15/2009 5:30 PM (GMT -6)   
Lovelabs, I hope the issue resolves for you. I don't get canker sores but sometims get severe inflammation and soreness in the bottom inside of my lip. Before getting diagnosed with LD the doctors just thought it was some type of allergic reaction but could never figure out to what. My llmd said it's coming from the cns. When I first started treatment it got really bad from herxing and then went away. Now it's starting to rear it's ugly head again. Ugh!!

Rose, Thank you for mentioning your friend. Reading that it took her so long to see any improvement gives me the encouragement I need so badly right now.

Tala 3, Reading your post also helped tremendously. Lately I've been on the "pity pot" for this very reason. I'm glad understanding helps you and I hope to follow in your footsteps and soon I hope because feeling like a victim stinks and is just so uncomfortable for me. I just don't do very well playing the victim and that's where I've been stuck no matter how much rationalizing I try to do. Ugh!! Anyway, thanks!

Sorry for the vent and hope I didn't go too off-track here.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 11/15/2009 7:02 PM (GMT -6)   
Tala3- thanks for shedding some light on the whole compassion issue. I'm not tooting my own horn but I always ask, or call, or offer to babysit, or drive someone to a doctors appt, or grocery shop for anyone who needs it. I know a lot of my friends have gone through some crappy stuff. I have always been there. And when a friends dad died I am the one to send a card to her on fathers day, just because. It is who I am. And I have trouble understanding that everyone is not like that. Even when I watched Under our Skin for the first time, I cried like a baby. Now I am a 40 year old woman watching this at a public library, balling. Not because I have this disease, but all those kids that had it. I almost couldn't handle watching them suffer! I know people have their own crap they are going through but geez even throughout my illness I haven't forgotten how to care about others. I still think some people just suck. It's probably not the best way to think but I do!

ThePlum13-
I am on biaxin now and the cankers are so bad. Maybe it is time to up the probiotics.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/15/2009 7:04 PM (GMT -6)   
Scorpio - I think it is good to vent, especially if you end up in a better place because of it. Thanks for putting words to what many of us feel or have felt. Having a chronic, painful illness brings forth all sorts of emotions. The loss associated with our physical limitations calls forth its own kind of mourning. Lyme, by its nature, messes with our hormones and body chemicals, creating emotional upheaval. I do not want to be positive all of the time; if I end up in a positive frame of mind, that's good enough. The rest of the time, if I need to vent, I vent, if I need to cry, I cry - whatever it takes to work my way through it. So I hope you don't feel bad for venting, and I certainly don't think it is off track. In my view venting is part of healing.

Rose
I have Lyme; it doesn't have me.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 11/15/2009 7:59 PM (GMT -6)   
Thanks Rose!
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