wellnoshow
02-08-2009, 12:59 PM
About a year ago, I started sleeping on a fouton that was way too soft (wasn't designed to be used as a bed). After a few weeks I began having jaw pain and clicking and occasionally even getting lockjaw. Not too long after this I began having intense sinus pain and pressue. Back pain progressively increased and depression kicked in soon thereafter. I feel fatigued all the time, constantly anxious and stressed out. I'm always in a haze and can not find any joy out of life. Looking at recent pictures of myself and in the mirror, my posture has been extremely compromised, most likely due to the shoddy fouton that I slept on.
My main issue is concerning my sleep patterns. Anyone and everyone that has seen me sleep or slowly fall asleep complains of me snoring extremely loudly. I am by no means overweight and only drink and smoke occasionally. While sleeping, I feel as if I am waking from a bad dream gasping for breath, but I never actually dream. Or, at least, I can never remember them. After the momentary awakening I fall back asleep only to wake up additional times throughout the night. When I wake up I never feel rested. I have heard apnea can cause depression, fatigue, fibromyalgia, and many people teeth grind during apnea episodes (I am a grinder). What can I do about this? Is my posture/bad back causing this? Could it be apnea?
I am seeing a psychologist sometime in early March. Hopefully he will be able to help me out with this issue.
My main issue is concerning my sleep patterns. Anyone and everyone that has seen me sleep or slowly fall asleep complains of me snoring extremely loudly. I am by no means overweight and only drink and smoke occasionally. While sleeping, I feel as if I am waking from a bad dream gasping for breath, but I never actually dream. Or, at least, I can never remember them. After the momentary awakening I fall back asleep only to wake up additional times throughout the night. When I wake up I never feel rested. I have heard apnea can cause depression, fatigue, fibromyalgia, and many people teeth grind during apnea episodes (I am a grinder). What can I do about this? Is my posture/bad back causing this? Could it be apnea?
I am seeing a psychologist sometime in early March. Hopefully he will be able to help me out with this issue.
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bethsheba
02-08-2009, 02:37 PM
...After a few weeks I began having jaw pain and clicking and occasionally even getting lockjaw.
Clicking joints, in particular the jaw, are symptoms of Lyme Disease, as well as the other symptoms you mention. I would suggest you consider getting specialized testing done (by Igenex Labs as the Elisa most docs use is so inaccurate that many think it should be banned).
Panic and anxiety attacks, mood disorders and other psychiatric complaints are symptoms of this disease...although I value the skills of psychologists and psychiatrists, I think it unlikely they will be of use...best consult with a Lyme Literate Medical Doctor to rule out lyme...because if you don't, and it is lyme, you may experience years of unnecessary pain and suffering that could have been avoided.
Bethsheba
PS People who have undiagnosed Lyme often post here before getting a diagnosis....your post is not unusual.
Clicking joints, in particular the jaw, are symptoms of Lyme Disease, as well as the other symptoms you mention. I would suggest you consider getting specialized testing done (by Igenex Labs as the Elisa most docs use is so inaccurate that many think it should be banned).
Panic and anxiety attacks, mood disorders and other psychiatric complaints are symptoms of this disease...although I value the skills of psychologists and psychiatrists, I think it unlikely they will be of use...best consult with a Lyme Literate Medical Doctor to rule out lyme...because if you don't, and it is lyme, you may experience years of unnecessary pain and suffering that could have been avoided.
Bethsheba
PS People who have undiagnosed Lyme often post here before getting a diagnosis....your post is not unusual.
wellnoshow
02-08-2009, 02:54 PM
I've had blood work done by my general pracititioner, not exactly looking for lyme disease. But wouldn't that have shown up on the labs? I don't have any rashes on my skin either. Lyme disease sounds very unlikely at this point. Additionally, where could I have possibly contracted such a disease? Don't they come from ticks? Which come from deers, mostly?
My brother is experiencing similar symptoms, because I was unaware of the detrimental effects of the fouton and foolishly let him sleep on it. He now has horrible posture, bad back, chronic fatigue, snores a lot; when I listen to him sleep, I can definitely note that he has apnea episodes. Holds his breath for a few seconds and then seems to gasp or choke for air. After doctor jumping for several months now, I'm overwhelmed.
My brother is experiencing similar symptoms, because I was unaware of the detrimental effects of the fouton and foolishly let him sleep on it. He now has horrible posture, bad back, chronic fatigue, snores a lot; when I listen to him sleep, I can definitely note that he has apnea episodes. Holds his breath for a few seconds and then seems to gasp or choke for air. After doctor jumping for several months now, I'm overwhelmed.
bethsheba
02-08-2009, 04:06 PM
I've had blood work done by my general pracititioner, not exactly looking for lyme disease. But wouldn't that have shown up on the labs?
No, it wouldn't. Like prescription medications, lab tests can be patented so not every lab can perform every test. Doctors often test for Lyme using the Elisa because it is easy to do and relatively cheap, but some have come out and said to do away with it due to it's unreliability. The Center for Communicable Disease and international lyme specialists advocate diagnosis and treatment by SYMPTOMS as the tests are unreliable.
Some say less than 30 percent get a rash..although getting a bullseye rash is the one defining symptom, you can have Lyme without getting the rash.
....Lyme disease sounds very unlikely at this point.
I think Lyme is very possible...clicking and popping joints are classic symptoms of lyme...and I have not seen any other diagnosis in which the clicking and popping joints responded to treatment except for lyme. That's not to say other diseases can't cause clicking and popping joints...it's just that I am unaware of them and I have been reading these boards for over 2 years.
You can be born with Lyme Disease and it can lie dormant for years even decades...you can get it through sexual transmission and theoretically, blood transfusions. Although at least 5 different ticks can transmit the disease (the deer tick is only one tick transmitter), other insects can infect humans as well.
It is not uncommon for many family members to have this disease...as I've mentioned, you can be born with it if your mother was infected by the "bug". But I suspect that because you and your brother are both expereincing symptoms at the same time, you may have been exposed walking, hiking, biking, camping, or whatever in the same area. I might add here that I knew 3 professional women who acquired Lyme disease...they didn't remember getting bitten and they didn't get rashes, either...but they all lived on wooded city lots.
I am not a doctor and I have no intention of diagnosing you...however, I am bringing this to your attention because if you choose to ignore this possibility, your symptoms may very well escalate, and hopefully, you will remember something I have told you.
When Lyme goes undiagnosed for a long period of time, it becomes much more difficult to treat and some damage becomes permenant. You might ask yourself if you are willing to take that chance...more on the Lyme boards.
Take care and let us know how you fare.
Bethsheba
No, it wouldn't. Like prescription medications, lab tests can be patented so not every lab can perform every test. Doctors often test for Lyme using the Elisa because it is easy to do and relatively cheap, but some have come out and said to do away with it due to it's unreliability. The Center for Communicable Disease and international lyme specialists advocate diagnosis and treatment by SYMPTOMS as the tests are unreliable.
Some say less than 30 percent get a rash..although getting a bullseye rash is the one defining symptom, you can have Lyme without getting the rash.
....Lyme disease sounds very unlikely at this point.
I think Lyme is very possible...clicking and popping joints are classic symptoms of lyme...and I have not seen any other diagnosis in which the clicking and popping joints responded to treatment except for lyme. That's not to say other diseases can't cause clicking and popping joints...it's just that I am unaware of them and I have been reading these boards for over 2 years.
You can be born with Lyme Disease and it can lie dormant for years even decades...you can get it through sexual transmission and theoretically, blood transfusions. Although at least 5 different ticks can transmit the disease (the deer tick is only one tick transmitter), other insects can infect humans as well.
It is not uncommon for many family members to have this disease...as I've mentioned, you can be born with it if your mother was infected by the "bug". But I suspect that because you and your brother are both expereincing symptoms at the same time, you may have been exposed walking, hiking, biking, camping, or whatever in the same area. I might add here that I knew 3 professional women who acquired Lyme disease...they didn't remember getting bitten and they didn't get rashes, either...but they all lived on wooded city lots.
I am not a doctor and I have no intention of diagnosing you...however, I am bringing this to your attention because if you choose to ignore this possibility, your symptoms may very well escalate, and hopefully, you will remember something I have told you.
When Lyme goes undiagnosed for a long period of time, it becomes much more difficult to treat and some damage becomes permenant. You might ask yourself if you are willing to take that chance...more on the Lyme boards.
Take care and let us know how you fare.
Bethsheba
wellnoshow
02-08-2009, 05:12 PM
betsheba, now that I think about it, Lyme disease may be very likely. I think it may have spread to my nervous system, which is why I always feel a tingly and burning sensation which I often assume is tension due to stress. The right side of my face seems to be more "flaccid" than my left but I'm so tense that I adjust it by lifting it up a bit.
Although my psychologist couldn't do much to treat it, could I bring it up to him and expect him to talk to my mom about taking me back to my GP?
Although my psychologist couldn't do much to treat it, could I bring it up to him and expect him to talk to my mom about taking me back to my GP?
bethsheba
02-08-2009, 07:41 PM
... The right side of my face seems to be more "flaccid" than my left but I'm so tense that I adjust it by lifting it up a bit.
This very much sounds like Bell's Palsey which many with Lyme experience...the tingling and burning is also a common symptoms of Lyme.
Yes, do bring it up to your psychologist! When I woke from my nap I remembered that one of our sleep posters thought she had apnea, and her psychologist suggested Lyme...but any case, do bring it up with your psychologist and with your parents. We have some young people who have posted on the Lyme boards and others have helped them with working with their parents, too.
Although I had no way of knowing, I didn't realize you were so young! I"m going to say that many people get "brushed off" when they try to get help from their doctors/family/friends, etc. because they don't really know much about lyme. Because of your youth and because of the nature of this epidemic, you (and your brother and your parents) might have to work extra hard to gather information, present your case, and get the necessary tests to rule out Lyme. Doctors and specialists just don't have the training to diagnose and treat this disease!! That is why many Lymies suggest seeing a Lyme Literate Medical Doctor and having their tests run through Igenex.
I'll try to find one or two "old" posts for you that may be of interest.
Take care! And do stay in touch.
Bethsheba
PS I looked long and hard for these posts, but buried in these threads is reference to a psychologist who recognized the symptoms of Lyme in a person with sleep problems.
healthboards.com/boards/showthread.php?t=574726">misdiagnosis</a>
This very much sounds like Bell's Palsey which many with Lyme experience...the tingling and burning is also a common symptoms of Lyme.
Yes, do bring it up to your psychologist! When I woke from my nap I remembered that one of our sleep posters thought she had apnea, and her psychologist suggested Lyme...but any case, do bring it up with your psychologist and with your parents. We have some young people who have posted on the Lyme boards and others have helped them with working with their parents, too.
Although I had no way of knowing, I didn't realize you were so young! I"m going to say that many people get "brushed off" when they try to get help from their doctors/family/friends, etc. because they don't really know much about lyme. Because of your youth and because of the nature of this epidemic, you (and your brother and your parents) might have to work extra hard to gather information, present your case, and get the necessary tests to rule out Lyme. Doctors and specialists just don't have the training to diagnose and treat this disease!! That is why many Lymies suggest seeing a Lyme Literate Medical Doctor and having their tests run through Igenex.
I'll try to find one or two "old" posts for you that may be of interest.
Take care! And do stay in touch.
Bethsheba
PS I looked long and hard for these posts, but buried in these threads is reference to a psychologist who recognized the symptoms of Lyme in a person with sleep problems.
healthboards.com/boards/showthread.php?t=574726">misdiagnosis</a>
wellnoshow
02-08-2009, 09:54 PM
I've been doing more research and it says Lyme disease and sleep apnea are commonly mistaken for each other. Hopefully my psychologist can do something about this.
bethsheba
02-08-2009, 10:02 PM
I've been doing more research and it says Lyme disease and sleep apnea are commonly mistaken for each other. ....
Thank you for sharing that info...I haven't come across if myself but then I wasn't looking for it. Only recently have I noticed a number of posters (on this board and on others) with sleep problems and symptoms that suggest Lyme disease...again, I thank you for the "head's up" on that bit of info.
Bethsheba
Thank you for sharing that info...I haven't come across if myself but then I wasn't looking for it. Only recently have I noticed a number of posters (on this board and on others) with sleep problems and symptoms that suggest Lyme disease...again, I thank you for the "head's up" on that bit of info.
Bethsheba
Hundredwaters
02-09-2009, 12:20 AM
You have a considerable likelihood you have an upper cervical neck issue.
Also - it is unlikely that your futon is the main precipitant of your poor posture.
Also - it is unlikely that your futon is the main precipitant of your poor posture.
Hundredwaters
02-09-2009, 12:21 AM
also - tmj (or more correctly... tmjd) is highly correlated with obstructive sleep apnea
wellnoshow
02-09-2009, 08:39 AM
I've already seen a chiropractor for a few weeks, his adjustments worked well for the hour or two afterwards but the pain returned quickly.
If I do some neck strengthening exercises at my local gym would it help with my apnea/tmj?
Thank you for all the assistance I've recieved so far. To be honest, it's a hassle waking up every morning and trying to live life in pain. The most frustrating part isn't even the pain; it's the brain fog I'm in. Nearly impossible to study for tests and maintain good academics, let alone social life.
If I do some neck strengthening exercises at my local gym would it help with my apnea/tmj?
Thank you for all the assistance I've recieved so far. To be honest, it's a hassle waking up every morning and trying to live life in pain. The most frustrating part isn't even the pain; it's the brain fog I'm in. Nearly impossible to study for tests and maintain good academics, let alone social life.
bethsheba
02-09-2009, 09:33 AM
...If I do some neck strengthening exercises at my local gym would it help with my apnea/tmj?
Wellnoshow,
I have been diagnosed with obstructive and central apnea so I've done a lot of reading and compared notes with a lot of people (including my specialists). Based on the knowledge I've gleaned over the past few years, I would be pretty certain that exercise will not help your apnea (unless you are overweight and the exercise helps you lose that weight).
TMJ is a COMMON Lyme symptom...if you do an advanced search, you'll find tmj suffers posting on different boards, with similar symptoms...but the posters who have been diagnosed with Lyme, and treated for Lyme are the ones whose tmj responds to treatment.
Wellnosnow, what I am about to say is very, very important...MOST doctors, including Infectious Disease doctors, do not have the training, the knowledge, or the experience to diagnose and treat Lyme!! If you read the Lyme boards, you'll have a better understanding of what I am saying...I have learned the hard way, that doctors are often wrong...and too arrogant to admit it.
Bethsheba
Wellnoshow,
I have been diagnosed with obstructive and central apnea so I've done a lot of reading and compared notes with a lot of people (including my specialists). Based on the knowledge I've gleaned over the past few years, I would be pretty certain that exercise will not help your apnea (unless you are overweight and the exercise helps you lose that weight).
TMJ is a COMMON Lyme symptom...if you do an advanced search, you'll find tmj suffers posting on different boards, with similar symptoms...but the posters who have been diagnosed with Lyme, and treated for Lyme are the ones whose tmj responds to treatment.
Wellnosnow, what I am about to say is very, very important...MOST doctors, including Infectious Disease doctors, do not have the training, the knowledge, or the experience to diagnose and treat Lyme!! If you read the Lyme boards, you'll have a better understanding of what I am saying...I have learned the hard way, that doctors are often wrong...and too arrogant to admit it.
Bethsheba
wellnoshow
02-09-2009, 07:00 PM
Bethsheba, can lyme be genetically acquired? It's too much of a coincidence that my brother and I are both having these issues, and neither of us remember any "bulls-eye" marks on skin.
It might be important to note that my psychologist appointment is on March 5th (nearly a month away). Even if I do bring it up to him, it will take another few weeks to resolve the "lyme vs apnea, or maybe even both" situation I'm in. Should I be worried? Will I drop dead anytime soon? Maybe I'm taking it over the top a little but I'm sure my reason to worry is good enough!
Who knows.. maybe hundredwaters is right. It may just be a neck issue that I can resolve with some resistance training and weight lifting. Hopeful, hopeful, hopeful I am. :angel:
It might be important to note that my psychologist appointment is on March 5th (nearly a month away). Even if I do bring it up to him, it will take another few weeks to resolve the "lyme vs apnea, or maybe even both" situation I'm in. Should I be worried? Will I drop dead anytime soon? Maybe I'm taking it over the top a little but I'm sure my reason to worry is good enough!
Who knows.. maybe hundredwaters is right. It may just be a neck issue that I can resolve with some resistance training and weight lifting. Hopeful, hopeful, hopeful I am. :angel:
bethsheba
02-09-2009, 07:49 PM
Lyme was first identified in the state I live in (although some give that "honor" to Conn) about 30 years ago, so it is a relatively "new" disease to the health care field...there is some evidence that it may have been around for over 100 years...but knowing about it is "new". They don't know if it can be genetically acquired...they do know that it can be passed on to a baby in the womb if the mother has the infection. They suspect that some people may be genetically predisposed to not being able to fight off the infection without "outside" help. Some people get lyme and it goes away by itself. Others suffer from one chronic problem after the next, year after year after year, and some die.
There is more than one "lymie" in many families...but most likely, it is simply because these families live and play in an environment in which ticks and other carriers thrive....they suspect that one reason lyme is epidemic along the coast (I doubt all those people are related, :D, is because lyme carriers (like ticks) fall off of the birds to the ground after they've "dined" on their host. Once on the ground these carriers then look for another "meal".
Few people remember a bulls eye rash....if a tick or nit (which would be the size of the period on the end of this sentence) were to fall onto my head and feast on my scalp, I doubt that I would know it was there...and I doubt I would be able to see a rash (I don't have eyes up there:D, and my hair was so thick, I wouldn't be able to see a zit, much less a nit....forgive me, sometimes I get a little carried away, :dizzy:). And if a tick bit me on my back, I wouldn't be aware of a rash...the tick bites with a numbing agent and I doubt anyone would feel it. But again, we're just talking tics here and evidence suggests fleas, flies, mosquitos and other insects may transmit this disease...but again, there is little we know for sure.
... Even if I do bring it up to him, it will take another few weeks to resolve the "lyme vs apnea, or maybe even both" situation I'm in. Should I be worried? Will I drop dead anytime soon? Maybe I'm taking it over the top a little but I'm sure my reason to worry is good enough!
Wellnoshow, it will take much longer than you think...and that's if everything goes according to plan. Many, many adults battle their doctors, their specialists, and the "system" to get diagnosed and treated for this condition. Should you be worried? I would only be worried if people don't take your concerns seriously...and that is very likely to happen...very likely. You don't know if you have lyme...but it is a very good possiblity. Take one thing at a time or you will get overwhelmed, trust me. This is a process...right now, you've got an appointment with a psychologist (which is great, s/he should be a good listener!), and if you haven't by then, perhaps you can get some guidance as to how to go about approaching your parents about this possibility. In the meantime, you might do an advanced search of the lyme boards for terms like sleep, parents, tmj, jaw, neck, or some symptoms you are experiencing. The more info you can gather, the better...trust no one until you have verified the info yourself, as we all have limited knowledge and we all make mistakes.
And last but not least, do not let anyone prescribe steroids for any of your conditions UNLESS you have 2 or more Lyme Literate Doctors say you don't have lyme. Steroids can make your condition rapidly deteriorate as it suppresses the immune system at the very time you need it the most.
Keep in touch...
Some links that may be of interesthttp://www.cdc.gov/mmwr/preview/mmwrhtml/rr4807a2.htm
http://www.cdc.gov/ncidod/EID/vol12no04/05-1016.htm
There is more than one "lymie" in many families...but most likely, it is simply because these families live and play in an environment in which ticks and other carriers thrive....they suspect that one reason lyme is epidemic along the coast (I doubt all those people are related, :D, is because lyme carriers (like ticks) fall off of the birds to the ground after they've "dined" on their host. Once on the ground these carriers then look for another "meal".
Few people remember a bulls eye rash....if a tick or nit (which would be the size of the period on the end of this sentence) were to fall onto my head and feast on my scalp, I doubt that I would know it was there...and I doubt I would be able to see a rash (I don't have eyes up there:D, and my hair was so thick, I wouldn't be able to see a zit, much less a nit....forgive me, sometimes I get a little carried away, :dizzy:). And if a tick bit me on my back, I wouldn't be aware of a rash...the tick bites with a numbing agent and I doubt anyone would feel it. But again, we're just talking tics here and evidence suggests fleas, flies, mosquitos and other insects may transmit this disease...but again, there is little we know for sure.
... Even if I do bring it up to him, it will take another few weeks to resolve the "lyme vs apnea, or maybe even both" situation I'm in. Should I be worried? Will I drop dead anytime soon? Maybe I'm taking it over the top a little but I'm sure my reason to worry is good enough!
Wellnoshow, it will take much longer than you think...and that's if everything goes according to plan. Many, many adults battle their doctors, their specialists, and the "system" to get diagnosed and treated for this condition. Should you be worried? I would only be worried if people don't take your concerns seriously...and that is very likely to happen...very likely. You don't know if you have lyme...but it is a very good possiblity. Take one thing at a time or you will get overwhelmed, trust me. This is a process...right now, you've got an appointment with a psychologist (which is great, s/he should be a good listener!), and if you haven't by then, perhaps you can get some guidance as to how to go about approaching your parents about this possibility. In the meantime, you might do an advanced search of the lyme boards for terms like sleep, parents, tmj, jaw, neck, or some symptoms you are experiencing. The more info you can gather, the better...trust no one until you have verified the info yourself, as we all have limited knowledge and we all make mistakes.
And last but not least, do not let anyone prescribe steroids for any of your conditions UNLESS you have 2 or more Lyme Literate Doctors say you don't have lyme. Steroids can make your condition rapidly deteriorate as it suppresses the immune system at the very time you need it the most.
Keep in touch...
Some links that may be of interesthttp://www.cdc.gov/mmwr/preview/mmwrhtml/rr4807a2.htm
http://www.cdc.gov/ncidod/EID/vol12no04/05-1016.htm
wellnoshow
02-09-2009, 11:55 PM
Since I was initially having jaw and sinus issues, I went to my GP. Although she had no idea whether it was actually a sinus infection or not, she prescribed me a course of antibiotics and oral steroids. Unfortunately, I have already taken them and this was about 2 months ago. They did not help at all, if anything I felt worse afterwards.
Could she have possibly screwed me over (unknowingly)? I am so frustrated at this point. All I can do is ask questions, and when I get answers I come up with new ones because none of them help.
Are there any natural ways I can boost my immune system? Not like silver or whatever, just any quick home remedies I can concoct on my own?
Could she have possibly screwed me over (unknowingly)? I am so frustrated at this point. All I can do is ask questions, and when I get answers I come up with new ones because none of them help.
Are there any natural ways I can boost my immune system? Not like silver or whatever, just any quick home remedies I can concoct on my own?
bethsheba
02-10-2009, 08:53 AM
...she prescribed me a course of antibiotics and oral steroids. Unfortunately, I have already taken them and this was about 2 months ago. They did not help at all, if anything I felt worse afterwards.
If you have an undiagnosed bacterial infection (like Lyme), steroids will make the condition WORSE! Be on the look out for any sores or any other signs of infection. I was on steroids for 10 days only to have a hole in my thumb develop out of the blue, and the doctors had a difficult time treating it despite several courses of antibiotics...so be alert and watch for any changes in your body in the next weeks/months. I would suggest you keep a journal about your thoughts, emotions, activities of daily living so you have a record of any changes....it's easy to forget things when one is dealing with an illness.
Could she have possibly screwed me over (unknowingly)?
She did what most doctors would have done...again, Lyme is a relatively new disease and most docs don't have a clue. That is why, for you, the most difficult challenge ahead, may be getting people to realize that a Lyme Literate Medical doctor is the specialist that you need to see to rule out/in this condition.
I am so frustrated at this point. All I can do is ask questions, and when I get answers I come up with new ones because none of them help. It is understandable that you'd be frustrated...I think you must be an amazing individual because
1. You're asking good questions.
2. You're not denying the possibility (and at this point it is only a possibilty...you don't know what you have--but apparently the doctors don't either).
3. You're receptive to new information
There may be natural ways that may help ease your conditions...but I am not the one to answer your questions regarding these...best check with people on the Lyme boards who are being treated by LLMDs as they should have the best info.
Have included a post about jaw problems...if I recall, at least 4 of the people on this thread had been bitten by ticks (they had posted that info on other threads...not the one about jaw problems). Unfortunately, denial is common, and those who do not investigate every possibility, live/die with the consequences.
Keep in touch!
<a href="http://www.healthboards.com/boards/showthread.php?t=626843">My Ridiculous 6 Year Health Problem: So The Jaw Is Responsible?</a>
If you have an undiagnosed bacterial infection (like Lyme), steroids will make the condition WORSE! Be on the look out for any sores or any other signs of infection. I was on steroids for 10 days only to have a hole in my thumb develop out of the blue, and the doctors had a difficult time treating it despite several courses of antibiotics...so be alert and watch for any changes in your body in the next weeks/months. I would suggest you keep a journal about your thoughts, emotions, activities of daily living so you have a record of any changes....it's easy to forget things when one is dealing with an illness.
Could she have possibly screwed me over (unknowingly)?
She did what most doctors would have done...again, Lyme is a relatively new disease and most docs don't have a clue. That is why, for you, the most difficult challenge ahead, may be getting people to realize that a Lyme Literate Medical doctor is the specialist that you need to see to rule out/in this condition.
I am so frustrated at this point. All I can do is ask questions, and when I get answers I come up with new ones because none of them help. It is understandable that you'd be frustrated...I think you must be an amazing individual because
1. You're asking good questions.
2. You're not denying the possibility (and at this point it is only a possibilty...you don't know what you have--but apparently the doctors don't either).
3. You're receptive to new information
There may be natural ways that may help ease your conditions...but I am not the one to answer your questions regarding these...best check with people on the Lyme boards who are being treated by LLMDs as they should have the best info.
Have included a post about jaw problems...if I recall, at least 4 of the people on this thread had been bitten by ticks (they had posted that info on other threads...not the one about jaw problems). Unfortunately, denial is common, and those who do not investigate every possibility, live/die with the consequences.
Keep in touch!
<a href="http://www.healthboards.com/boards/showthread.php?t=626843">My Ridiculous 6 Year Health Problem: So The Jaw Is Responsible?</a>
wellnoshow
02-12-2009, 01:25 AM
Bethseba, you have been a great help. Thank you for all of the information. I actually visited an ex-teacher of mine, who is also a close friend. We sat down and discussed my symptoms, and without hesitation he looked me in the eyes and said "maybe you have lyme disease." And I had not brought up the topic to him. So I will definitely pursue further examination with this.
Although my psychologist will not be able to do any medical procedures, I'm sure he/she will be able to send me somewhere to get tests done. I know for a fact I have apnea, I don't need a sleep study or doctor to diagnose me. I wake up way too many times gasping for breath, and feel way too sleepy during the day to convince me otherwise.
I have not been feeling too well these days. Maybe the additional stress isn't helping but I feel more ill every day. It's tough because I [removed].... haven't lived much of life yet. I wonder why some of us have it so difficult.
Also, although the weather is pretty dry these days I have been noticing extremely dry and burning eyes throughout this whole ordeal. I just recently found that the skin on my hands is extremely dry and wrinkly, and some scabbing has formed around my knuckles. Is this an infection or just the result of chapped skin?
Although my psychologist will not be able to do any medical procedures, I'm sure he/she will be able to send me somewhere to get tests done. I know for a fact I have apnea, I don't need a sleep study or doctor to diagnose me. I wake up way too many times gasping for breath, and feel way too sleepy during the day to convince me otherwise.
I have not been feeling too well these days. Maybe the additional stress isn't helping but I feel more ill every day. It's tough because I [removed].... haven't lived much of life yet. I wonder why some of us have it so difficult.
Also, although the weather is pretty dry these days I have been noticing extremely dry and burning eyes throughout this whole ordeal. I just recently found that the skin on my hands is extremely dry and wrinkly, and some scabbing has formed around my knuckles. Is this an infection or just the result of chapped skin?
bethsheba
02-12-2009, 06:50 AM
...I actually visited an ex-teacher of mine, who is also a close friend. We sat down and discussed my symptoms, and without hesitation he looked me in the eyes and said "maybe you have lyme disease."
Oh, I am comforted to know you have this kind of support system in place!! It may or may not be lyme, but there is too much at stake not to considerate it. But as I've said, many, many adults who have been diagnosed with this condition, have had to do "battle" to get diagnosed and treated...you're ahead of the game if you have friends who are considering Lyme!
I would hope that your psychologist will put you in touch with a Lyme Literate Medical Doctor (one can be found by referring to the Lyme Board stickies or by calling Igenex Labs)...other docs are often a waste of time (and money), and may make the condition worse (as you may be finding with the steroid treatment). Many Lymies recommend testing thru Igenex out of CA.
The apnea may be a symptom of Lyme...I don't know what to advise here...I have apnea and know what the long and short term risks are...but sometimes these things abate by treating the condition causing the apnea which could be Lyme...I"m thinking, and this is just a thought, that I would consult a LLMD to see what s/he suggests as to the apnea....before seeing a sleep specialist...but I don't know.
....I have not been feeling too well these days. Maybe the additional stress isn't helping but I feel more ill every day.
I think this is because you were recently on steroids! That is why it is so important you watch for ANY, ANY changes in your body, behavior, and thoughts and emotions. The changes in your skin come as no surprise, given the steroids. Remember the hole in my thumb? That is why it is CRITICAL that you note the changes...and get treatment as soon as possible. Perhaps someone on the Lyme boards can give you some suggestions as to how you and your doctors might treat the skin disorder until you can get in to see a LLMD...this is nothing to mess with!! (I was on steroids only 10 days, but the hole in my thumb developed weeks/months after steroidal treatment. and yes, my doctors were in agreement that the hole in my thumb, which wouldn't heal and kept getting bigger, was caused indirectly by steroids).Given the steroid treatment and given the recent decline in your health, I think is may be very important to get in to see a LLMD as soon as possible!!
It's tough because I'm only 16 and haven't lived much of life yet. I wonder why some of us have it so difficult.
Yes, and what makes it even harder (based on my experience looking back to when I was 16), is that few of your peers have the life experience to offer you the support that you need at this time. Again, I am comforted to know that you have an adult friend and a psychologist who can listen and take your concerns seriously.
It isn't fair that anyone of any age should be dealing with the issues you are dealing with but given your age, you have special challenges! But you sound wise, despite your age, and I suspect you'll make lemonade out of lemons.
I just recently found that the skin on my hands is extremely dry and wrinkly, and some scabbing has formed around my knuckles. Is this an infection or just the result of chapped skin?
Although I suspect this came about because of the steroidal use, this is another symptom of Lyme...board rules limit the info we can post on these threads...could't find a "quick" govt site, but you're smart and I'm sure that if you want more info you'll find information about skin disorders and lyme disease...beyond the typical rash info.
I may be off the boards for a few days...but please know that I'll be thinking of you. I do hope you'll be feeling better soon, :angel:
{{{Wellnoshow}}}
Bethsheba
PS If you choose to post on the lyme board, do let people know how old you are as this may be an important factor as to what they advise (some LLMD's only treat adults, some only children, and treatments may vary depending on age).
Oh, I am comforted to know you have this kind of support system in place!! It may or may not be lyme, but there is too much at stake not to considerate it. But as I've said, many, many adults who have been diagnosed with this condition, have had to do "battle" to get diagnosed and treated...you're ahead of the game if you have friends who are considering Lyme!
I would hope that your psychologist will put you in touch with a Lyme Literate Medical Doctor (one can be found by referring to the Lyme Board stickies or by calling Igenex Labs)...other docs are often a waste of time (and money), and may make the condition worse (as you may be finding with the steroid treatment). Many Lymies recommend testing thru Igenex out of CA.
The apnea may be a symptom of Lyme...I don't know what to advise here...I have apnea and know what the long and short term risks are...but sometimes these things abate by treating the condition causing the apnea which could be Lyme...I"m thinking, and this is just a thought, that I would consult a LLMD to see what s/he suggests as to the apnea....before seeing a sleep specialist...but I don't know.
....I have not been feeling too well these days. Maybe the additional stress isn't helping but I feel more ill every day.
I think this is because you were recently on steroids! That is why it is so important you watch for ANY, ANY changes in your body, behavior, and thoughts and emotions. The changes in your skin come as no surprise, given the steroids. Remember the hole in my thumb? That is why it is CRITICAL that you note the changes...and get treatment as soon as possible. Perhaps someone on the Lyme boards can give you some suggestions as to how you and your doctors might treat the skin disorder until you can get in to see a LLMD...this is nothing to mess with!! (I was on steroids only 10 days, but the hole in my thumb developed weeks/months after steroidal treatment. and yes, my doctors were in agreement that the hole in my thumb, which wouldn't heal and kept getting bigger, was caused indirectly by steroids).Given the steroid treatment and given the recent decline in your health, I think is may be very important to get in to see a LLMD as soon as possible!!
It's tough because I'm only 16 and haven't lived much of life yet. I wonder why some of us have it so difficult.
Yes, and what makes it even harder (based on my experience looking back to when I was 16), is that few of your peers have the life experience to offer you the support that you need at this time. Again, I am comforted to know that you have an adult friend and a psychologist who can listen and take your concerns seriously.
It isn't fair that anyone of any age should be dealing with the issues you are dealing with but given your age, you have special challenges! But you sound wise, despite your age, and I suspect you'll make lemonade out of lemons.
I just recently found that the skin on my hands is extremely dry and wrinkly, and some scabbing has formed around my knuckles. Is this an infection or just the result of chapped skin?
Although I suspect this came about because of the steroidal use, this is another symptom of Lyme...board rules limit the info we can post on these threads...could't find a "quick" govt site, but you're smart and I'm sure that if you want more info you'll find information about skin disorders and lyme disease...beyond the typical rash info.
I may be off the boards for a few days...but please know that I'll be thinking of you. I do hope you'll be feeling better soon, :angel:
{{{Wellnoshow}}}
Bethsheba
PS If you choose to post on the lyme board, do let people know how old you are as this may be an important factor as to what they advise (some LLMD's only treat adults, some only children, and treatments may vary depending on age).
bethsheba
02-15-2009, 09:35 PM
Wellnosow,
Want you to know that I am thinking of you, and hope all's well.
Bethsheba
Want you to know that I am thinking of you, and hope all's well.
Bethsheba
wellnoshow
02-17-2009, 11:42 AM
Thanks beth. I'm not feeling any better but I've been working out and doing some cardio. It helps for short term. Have wisdom teeth extraction scheduled on Friday. Hopefully my immune system doesn't fail me while I wait to heal. Definitely don't want another infection.
bethsheba
02-17-2009, 12:24 PM
... Have wisdom teeth extraction scheduled on Friday. Hopefully my immune system doesn't fail me while I wait to heal.....
You might want to check with some Lymie's about the extraction...IF you have lyme, stress, illness, etc can make your symptoms worse.
If you decide to go ahead with the extraction, they'll prescribe antibiotics and it's very possible that you may feel worse due to the herxheimer reaction--but this is a good thing as it would mean the antibiotics were killing off bacteria in your body). If you experience the herxheimer reaction, you may develop new symptoms or your old symptoms may get worse.
I hope you're keeping a journal of how you feel, and your symptoms on a daily basis as this may be very helpful in diagnosing your condition.
Take care.
Bethsheba
You might want to check with some Lymie's about the extraction...IF you have lyme, stress, illness, etc can make your symptoms worse.
If you decide to go ahead with the extraction, they'll prescribe antibiotics and it's very possible that you may feel worse due to the herxheimer reaction--but this is a good thing as it would mean the antibiotics were killing off bacteria in your body). If you experience the herxheimer reaction, you may develop new symptoms or your old symptoms may get worse.
I hope you're keeping a journal of how you feel, and your symptoms on a daily basis as this may be very helpful in diagnosing your condition.
Take care.
Bethsheba
bethsheba
02-19-2009, 08:14 PM
Wellnoshow,
Just to let you know I am wishing you the best for your surgery tomorrow. I would hope that you will come back and visit us someday, as I know you will learn much in the days/weeks/months ahead.
Takecare, Wellnoshow!! And may your questioning mind find all the answers to good health.
Bethsheba
Just to let you know I am wishing you the best for your surgery tomorrow. I would hope that you will come back and visit us someday, as I know you will learn much in the days/weeks/months ahead.
Takecare, Wellnoshow!! And may your questioning mind find all the answers to good health.
Bethsheba
brian1980
04-08-2009, 04:56 PM
[REMOVED] You may consider that you have Lyme Disease.
i read all of your posts,i experianced the EXACT same thing your going thru...........go get the test....take the doxycycline and kill the bacteria before it desroys you!!!!!!!MENTALLY AND PYSICALLY. goodluck
i was a snowboard instructor for vail resorts very outgoing.....when i had lymes i stayed inside......couldnt find 1 thing to make me look forward to to be happy..........and i had ALL of your symptoms......looking in mirror all the pains etc.....
i read all of your posts,i experianced the EXACT same thing your going thru...........go get the test....take the doxycycline and kill the bacteria before it desroys you!!!!!!!MENTALLY AND PYSICALLY. goodluck
i was a snowboard instructor for vail resorts very outgoing.....when i had lymes i stayed inside......couldnt find 1 thing to make me look forward to to be happy..........and i had ALL of your symptoms......looking in mirror all the pains etc.....
bethsheba
04-09-2009, 08:52 AM
Welcome to the boards, Brian!!
I'm sure many will benefit from your personal experience, and I hope you're feeling/doing better now with treatment.
It's good to have you join us!
Bethsheba
I'm sure many will benefit from your personal experience, and I hope you're feeling/doing better now with treatment.
It's good to have you join us!
Bethsheba