Thank you in advance for anyone who reads this! I am going to try to not only blog sometimes about daily life but I will try to educate and raise awareness about lyme disease also.
Today is my youngest sons 11th birthday. Wow, how time flies! We had a nice dinner with family at Olive Garden and I made a yummy chocolate cake. I think he had a great day and was in a very good mood.
Yeah cause lately he has been very moody! I am not sure if this is lyme, his aspergers or early puberty. Or yikes for me if it's all 3 at once!!
I am going to find some good information to post here about the Psychiatric part of Lyme disease. I find it quit interesting and I think most people don't even know there is a link. I will also post some info about the cognitive problems it causes.
********************************************************************
Copy and past the below links into your internet browser to read more....I will post a paragraph from each link...
This is a really good brochure explaining the psychiatric side of lyme. I gave a copy to my own therapist before.
http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
"At any time after a tick bite, patients may also exhibit cognitive symptoms such as memory and concentration impairments and word-finding difficulties, ADHD-like symptoms, learning disabilities, OCD, crying spells, rages, depression/bipolar disorder, panic/anxiety disorders and psychosis - all may be caused or exacerbated by Lyme disease."
http://www.publichealthalert.org/Articles/pjlanghoff/psychiatric%20lyme%20disease.htm
"Psychosis, hallucinations, dementia, delusions, paranoia, rage, aggression, suicidal thinking, anxiety attacks, ADD, ADHD, OCD? words that would make any patient, physician, family member or researcher recoil when reading about the possibility that Lyme disease can cause one or more of these or other psychiatric issues."
http://www.lymeinfo.net/Shea-Leventhal.pdf
The cognitive problems associated with Lyme disease and other tick-borne illnesses include difficulty with:
1) attention and concentration,
2) speed and efficiency of processing information,
3) learning and memory,
4) auditory processing and language expression,
5) planning and organization and
6) multitasking.
These cognitive symptoms have a significant impact on learning and school performance.
There are also a lot of neurological problems associated with lyme disease. Once it gets into your brain and your nervous system it can cause a whole list of problems. I will post some of this information into future blogs so check back again.
Thursday, February 25, 2010
Wednesday, February 24, 2010
Lyme Disease Awareness and why I am blogging
I used to blog on my myspace page when I was first diagnosed late 2008 and early 2009. I have copied my blogs from myspace and posted them into this new blog that I am starting.
Read the "About Me" section about why I am doing this blog.
I also want to raise awareness about lyme disease and assure you that it DOES exist in the state of Ohio. No matter what doctors are telling you.
Lyme Disease is not heard of in the public enough so many people either don't know what it is or think it is rare. It is not rare at all! Ticks are everywhere and can even be in your own back yard. Yes even in the state of Ohio. Ticks don't know where the borders ends and are very common in PA.
First discovered as Juvenile Rheumatoid Arthritis in 1975 in Lyme, Connecticut.
It is being misdiagnosed as Rheumatoid Arthritis, Multiple Sclerosis, Lou Gherig's Disease(ALS), Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Autism and others.
You can get bit and not even know it. They can be a small as a poppy seed and they numb the area of the bite. Less then 50% of people even remember a bite.
There are 100+ symptoms because the bacteria can be anywhere in your body. It can go deep into your tissues and organs and effect your nervous system, your brain and memory, your muscles.
Some people are so sick they are in wheelchairs & some are dying! This disease can be treated with antibiotics if it it caught early. If it is caught late then it needs many months or years of treatment and could stay with you forever. The Lyme bacteria can hide deep in the tissue, muscle, organs and bones so that antibiotics can not kill it.
It is underdiagnosed because many doctors do not know enough to test for it. Or they are using the an outdated test by a lab that doesn't specialize in testing for lyme disease. There is a lab called Igenex that does a more accurate test but doctors are not using it or are not aware.
In the mean time many people are sick and don't know why! Then when they finally find a Lyme doctor they are denied long term treatment. Why? Because doctors are following treatment guidelines that say chronic lyme doesn't exist. Well I am proof that it does!
Please watch the lyme documentary called "Under Our Skin". I have a copy if anyone would like to see it to understand more about the seriousness of the illness. Also to understand why we have troubles finding a diagnosis, getting treated, finding doctors and getting insurance to pay!
Read the "About Me" section about why I am doing this blog.
I also want to raise awareness about lyme disease and assure you that it DOES exist in the state of Ohio. No matter what doctors are telling you.
Lyme Disease is not heard of in the public enough so many people either don't know what it is or think it is rare. It is not rare at all! Ticks are everywhere and can even be in your own back yard. Yes even in the state of Ohio. Ticks don't know where the borders ends and are very common in PA.
First discovered as Juvenile Rheumatoid Arthritis in 1975 in Lyme, Connecticut.
It is being misdiagnosed as Rheumatoid Arthritis, Multiple Sclerosis, Lou Gherig's Disease(ALS), Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Autism and others.
You can get bit and not even know it. They can be a small as a poppy seed and they numb the area of the bite. Less then 50% of people even remember a bite.
There are 100+ symptoms because the bacteria can be anywhere in your body. It can go deep into your tissues and organs and effect your nervous system, your brain and memory, your muscles.
Some people are so sick they are in wheelchairs & some are dying! This disease can be treated with antibiotics if it it caught early. If it is caught late then it needs many months or years of treatment and could stay with you forever. The Lyme bacteria can hide deep in the tissue, muscle, organs and bones so that antibiotics can not kill it.
It is underdiagnosed because many doctors do not know enough to test for it. Or they are using the an outdated test by a lab that doesn't specialize in testing for lyme disease. There is a lab called Igenex that does a more accurate test but doctors are not using it or are not aware.
In the mean time many people are sick and don't know why! Then when they finally find a Lyme doctor they are denied long term treatment. Why? Because doctors are following treatment guidelines that say chronic lyme doesn't exist. Well I am proof that it does!
Please watch the lyme documentary called "Under Our Skin". I have a copy if anyone would like to see it to understand more about the seriousness of the illness. Also to understand why we have troubles finding a diagnosis, getting treated, finding doctors and getting insurance to pay!
Understanding Chronic Illness (posted 04/28/09)
Tuesday, April 28, 2009
Understanding Chronic Illness
(Reposted from a friend... edited a little)
This made me cry! If I could have come with such great words, this is actually what I would say to my friends and family!
Amy
****************************************************************
But You "LOOK" Good! The wrong thing to say to someone with a chronic illness.
What Is A Chronic Illness, Anyway?
A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.
But, They "LOOK" Fine! How Can They Be Ill?
Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson�s, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!
Unfortunately, their families and friends are rarely supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
So, They Have "Good" & "Bad" Days, Right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Chronic/Progressive Stage): This persons disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relatives house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.
But, What If They "Give In" To The Illness?
When a young ice skater named Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason, people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is "giving in" to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidently, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year.
True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever.
So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why dont you tell them how amazed you are at their strength and perseverance!
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I dont want to hear the truth" or "your losses dont matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like youre feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I dont believe you, because you look fine to me.
" Instead try, "I am so glad to see you," "wow, I cant imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
"Learn To See With Your Ears!"
http://flash.lymenet.org/ubb/Forum3/HTML/008886.html
Understanding Chronic Illness
(Reposted from a friend... edited a little)
This made me cry! If I could have come with such great words, this is actually what I would say to my friends and family!
Amy
****************************************************************
But You "LOOK" Good! The wrong thing to say to someone with a chronic illness.
What Is A Chronic Illness, Anyway?
A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.
But, They "LOOK" Fine! How Can They Be Ill?
Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson�s, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!
Unfortunately, their families and friends are rarely supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
So, They Have "Good" & "Bad" Days, Right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Chronic/Progressive Stage): This persons disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relatives house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.
But, What If They "Give In" To The Illness?
When a young ice skater named Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason, people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is "giving in" to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidently, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year.
True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever.
So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why dont you tell them how amazed you are at their strength and perseverance!
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I dont want to hear the truth" or "your losses dont matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like youre feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I dont believe you, because you look fine to me.
" Instead try, "I am so glad to see you," "wow, I cant imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
"Learn To See With Your Ears!"
http://flash.lymenet.org/ubb/Forum3/HTML/008886.html
My Boys Symptom List (written 03/19/09)
Thursday, March 19, 2009
Adam & Brandon's symptoms
Adam symptoms & history of possible medical problems from Lyme:
~ Mono symptoms (for the last 6 months or so he is sleeping way more then normal and sometimes he can't wake up, many days of being late or missing school lately)
~ swollen glands & sore throats
~ frequent colds & allergies
~ no appetite (very thin)
~ has complained of various pains from muscles and ribs
~ leg & muscle pains when running (last week this got very severe after he ran track and he missed 2 days of school, then has had weakness since then, with troubles walking and dragging feet at school)
~ swelling around his knees
~ rashes (and eczema as a baby) (very sensitive skin)
~ appears to be sensitive to some medications
~ sensory problems (sensitive to pain & touch)
~ memory problems & forgetfulness
~ depression, moodiness & withdrawn
~ fatigue & poor stamina
~ stomach pains (gas) (also had an inguinal hernia and a stomach ulcer)
~ possible exercise intolerance (lots of troubles with pain and weakness after exercising)
~ headaches sometimes
~ ringing in the ears
~ ADHD like symptoms when he was in elementary school
~ a seizure when a baby (maybe from fever?)
~ complained of heart pain (this was years ago & he had normal heart tests so we thought dehydration but it happened several times)
Adam doesn't always tell me his symptoms so I am not sure if there are more?
*****************************************************
Brandons symptoms & history of possible medical problems from Lyme:
~ He has Aspergers (there is an autism/lyme connection)
~ anxiety
~ sensory problems (sensitive to pain, light, sound, heat, textures, smells)
~ eating disorder (very limited diet and sensitive to food textures)
~ vision problems (stabbing pains, double vision, involuntary eye movements, sensitive to light, eye floaters)
~ pain with urination (this has become urinary urgency & has been severe at times, worse when sitting, he misses school with this symptom)
~ moods swings & anxiety/depression/irritability/anger bursts
~ over-emotional reactions, crying easily
~ asthma, allergies & chronic infections
~ memory problems, forgetfulness
~ poor attention, focus & concentration problems
~ speech problems & slurred speech (I notice this at times)
~ letter and number reversals
~ nose bleeds
~ difficulty with swallowing sometimes
~ headaches (sometimes stabbing pains)
~ motion sickness & vertigo
~ nausea & heartburn
~ low body temp (almost every morning, troubles getting to school on time from it)
~ night sweats
~ fatigue & poor stamina
~ insomnia (hard time falling asleep & staying asleep & hard time waking up)
~ weight issues (overweight)
~ itchy rashes (he gets rashes a lot & has a rash on his cheeks at all times)
~ shortness of breath
~ dizzy & lightheaded after exercising
~ stomach problems (constipation, diarrhea, stomach pains)
~ clumsy and off balance
~ muscle weakness
~ tingling in hands & feet
~ ringing in the ears
~ sharp stabbing random pains all over body
~ pain areas he has complained of are eyes, ears, ribs, back & feet
~ stiff neck
~ jaw pain
~ joint cracking (joint problems can turn into arthritis)
~ fluid behind the knees (called Baker's cyst)
~ possible orthostatic hypotension (doctor did blood pressure while laying and then sitting and his pressure dropped 20 pts)
~ recent problem with tops of hands ~ very red, looks sunburned, burns and itches, sometimes so severe he can't go to school (not sure if allergy to new vitamins or lyme symptom?)
Some of these symptoms and health problems can be attributed to other things. But it is when you start to get so many at one time that you might question Lyme. Then when you have others in your family with it you would question it for sure!
Adam & Brandon's symptoms
Adam symptoms & history of possible medical problems from Lyme:
~ Mono symptoms (for the last 6 months or so he is sleeping way more then normal and sometimes he can't wake up, many days of being late or missing school lately)
~ swollen glands & sore throats
~ frequent colds & allergies
~ no appetite (very thin)
~ has complained of various pains from muscles and ribs
~ leg & muscle pains when running (last week this got very severe after he ran track and he missed 2 days of school, then has had weakness since then, with troubles walking and dragging feet at school)
~ swelling around his knees
~ rashes (and eczema as a baby) (very sensitive skin)
~ appears to be sensitive to some medications
~ sensory problems (sensitive to pain & touch)
~ memory problems & forgetfulness
~ depression, moodiness & withdrawn
~ fatigue & poor stamina
~ stomach pains (gas) (also had an inguinal hernia and a stomach ulcer)
~ possible exercise intolerance (lots of troubles with pain and weakness after exercising)
~ headaches sometimes
~ ringing in the ears
~ ADHD like symptoms when he was in elementary school
~ a seizure when a baby (maybe from fever?)
~ complained of heart pain (this was years ago & he had normal heart tests so we thought dehydration but it happened several times)
Adam doesn't always tell me his symptoms so I am not sure if there are more?
*****************************************************
Brandons symptoms & history of possible medical problems from Lyme:
~ He has Aspergers (there is an autism/lyme connection)
~ anxiety
~ sensory problems (sensitive to pain, light, sound, heat, textures, smells)
~ eating disorder (very limited diet and sensitive to food textures)
~ vision problems (stabbing pains, double vision, involuntary eye movements, sensitive to light, eye floaters)
~ pain with urination (this has become urinary urgency & has been severe at times, worse when sitting, he misses school with this symptom)
~ moods swings & anxiety/depression/irritability/anger bursts
~ over-emotional reactions, crying easily
~ asthma, allergies & chronic infections
~ memory problems, forgetfulness
~ poor attention, focus & concentration problems
~ speech problems & slurred speech (I notice this at times)
~ letter and number reversals
~ nose bleeds
~ difficulty with swallowing sometimes
~ headaches (sometimes stabbing pains)
~ motion sickness & vertigo
~ nausea & heartburn
~ low body temp (almost every morning, troubles getting to school on time from it)
~ night sweats
~ fatigue & poor stamina
~ insomnia (hard time falling asleep & staying asleep & hard time waking up)
~ weight issues (overweight)
~ itchy rashes (he gets rashes a lot & has a rash on his cheeks at all times)
~ shortness of breath
~ dizzy & lightheaded after exercising
~ stomach problems (constipation, diarrhea, stomach pains)
~ clumsy and off balance
~ muscle weakness
~ tingling in hands & feet
~ ringing in the ears
~ sharp stabbing random pains all over body
~ pain areas he has complained of are eyes, ears, ribs, back & feet
~ stiff neck
~ jaw pain
~ joint cracking (joint problems can turn into arthritis)
~ fluid behind the knees (called Baker's cyst)
~ possible orthostatic hypotension (doctor did blood pressure while laying and then sitting and his pressure dropped 20 pts)
~ recent problem with tops of hands ~ very red, looks sunburned, burns and itches, sometimes so severe he can't go to school (not sure if allergy to new vitamins or lyme symptom?)
Some of these symptoms and health problems can be attributed to other things. But it is when you start to get so many at one time that you might question Lyme. Then when you have others in your family with it you would question it for sure!
Both my Boys have Lyme too (written 03/19/09)
Thursday, March 19, 2009
BOTH MY BOYS HAVE LYME TOO
Both my boys have Lyme disease. I now believe that they were probably born with it.
This disease can take years and years to show its true self. In the mean time it can cause minor symptoms that can be attributed to other things. Therefore, it can be overlooked as a possibility in children. But if treated while young the prognosis is much better.
I now believe that Brandon shows more symptoms then Adam because he was taking a steroid inhaler for his asthma for years. Steroids are so bad for Lyme that my doctor told me "No steroids unless it is to save my life". They make the Lyme much worse.
Brandon has always been more of a sick child then Adam. Brandon is also the only one that breastfed and it is proven that Lyme is found in breast milk.
Both boys are about to start on antibiotics and supplements next week. They are going to take Biaxin right now. It is not sun sensitive like the one I am on.
They both have to get a ton of blood work done to check all their different levels. Also to check for other possible viruses and bacteria that are common with a person who’s immune system is busy fighting an illness.
They both have to be tested for co-infections that ticks carry along with Lyme. This will complicate their treatments and make symptoms worse if they have multiple bacteria in their bodies. Co-infections that I suspect are Bartonella and Babesia. Babesia is a cousin bacteria to Malaria.
Adam also probably has Epstein Barr Virus (which causes Mono). His spleen is enlarged so he can't take gym class anymore and he has to be very careful. If your spleen ruptures you can die. He also had to quit track because of his spleen and because of his leg weakness and pains.
Right now Adam is trying to finish the school year and attend a few field trips. Once he starts treatments the bacteria will die and release toxins in this body. He takes detox meds right now so I hope that will help. But the toxins will make him feel worse and cause his symptoms to flare up. If this gets too bad he will have to take a medical leave from school.
We are not sure what Brandon is going to do? I am trying to meet with the principal to talk to him. His doctor told him he can take a medical leave but he isn't sure he wants to. He doesn't want to leave his friends and miss the end of the school year fun things. His symptoms are causing him to miss several days a week sometimes. He is also late a lot. The one symptom that is hard for him right now is urinary urgency. He tried to go to school on Monday with that and ended up coming home 1 hr later. He has missed 2 days this week so far due to symptoms. I would like to try to get the school to let him go part time and get a tutor part time. I have heard of other kids that do this. If they won't then he will have to take a medical leave.
On Monday (3/23) we are headed to the lab to get all this blood work done. Then we start their antibiotics and hope for the best. I am really nervous about the toxins and worsening of symptoms. This is called a Herxheimer reaction. http://en.wikipedia.org/wiki/Herxheimer_reaction
I am going to post their symptoms in a new blog....
BOTH MY BOYS HAVE LYME TOO
Both my boys have Lyme disease. I now believe that they were probably born with it.
This disease can take years and years to show its true self. In the mean time it can cause minor symptoms that can be attributed to other things. Therefore, it can be overlooked as a possibility in children. But if treated while young the prognosis is much better.
I now believe that Brandon shows more symptoms then Adam because he was taking a steroid inhaler for his asthma for years. Steroids are so bad for Lyme that my doctor told me "No steroids unless it is to save my life". They make the Lyme much worse.
Brandon has always been more of a sick child then Adam. Brandon is also the only one that breastfed and it is proven that Lyme is found in breast milk.
Both boys are about to start on antibiotics and supplements next week. They are going to take Biaxin right now. It is not sun sensitive like the one I am on.
They both have to get a ton of blood work done to check all their different levels. Also to check for other possible viruses and bacteria that are common with a person who’s immune system is busy fighting an illness.
They both have to be tested for co-infections that ticks carry along with Lyme. This will complicate their treatments and make symptoms worse if they have multiple bacteria in their bodies. Co-infections that I suspect are Bartonella and Babesia. Babesia is a cousin bacteria to Malaria.
Adam also probably has Epstein Barr Virus (which causes Mono). His spleen is enlarged so he can't take gym class anymore and he has to be very careful. If your spleen ruptures you can die. He also had to quit track because of his spleen and because of his leg weakness and pains.
Right now Adam is trying to finish the school year and attend a few field trips. Once he starts treatments the bacteria will die and release toxins in this body. He takes detox meds right now so I hope that will help. But the toxins will make him feel worse and cause his symptoms to flare up. If this gets too bad he will have to take a medical leave from school.
We are not sure what Brandon is going to do? I am trying to meet with the principal to talk to him. His doctor told him he can take a medical leave but he isn't sure he wants to. He doesn't want to leave his friends and miss the end of the school year fun things. His symptoms are causing him to miss several days a week sometimes. He is also late a lot. The one symptom that is hard for him right now is urinary urgency. He tried to go to school on Monday with that and ended up coming home 1 hr later. He has missed 2 days this week so far due to symptoms. I would like to try to get the school to let him go part time and get a tutor part time. I have heard of other kids that do this. If they won't then he will have to take a medical leave.
On Monday (3/23) we are headed to the lab to get all this blood work done. Then we start their antibiotics and hope for the best. I am really nervous about the toxins and worsening of symptoms. This is called a Herxheimer reaction. http://en.wikipedia.org/wiki/Herxheimer_reaction
I am going to post their symptoms in a new blog....
My Symptom List (written 01/09/09)
Friday, January 09, 2009
MY SYMPTOM LIST
Ok for my fellow lyme friends you will understand why this list is so long! But for my other friends and family this is really what I deal with! No kidding! I don't obviously have all these symptoms each day. They come and go. I do have some of them each day (fatigue, arthritis, cognitive problems to name a few).
The bacteria get into your brain and every organ, muscle, and bone in your body so it causes symptoms in your whole body. It has also effected all of my bodies systems, including immune system, endrocrine system, digestive system, nervous system. See this webpage for details about any of these systems. http://www.innerbody.com/htm/body.html
This also causes my hormone levels to be off & my metabolism to be very low so I can't lose weight.
SOME OF MY SYMPTOMS:
~ Lightheaded, dizzy spells & feeling spacey or drugged
~ Short of breath (worse with heat or when climbing steps)
~ Very severe dibilating fatigue
~ Heart palpitations & pounding heart beats
~ I get PVC's in my heart (irregular heart beats) (had cardiologist tests)
~ Possible heart murmur (need to get tested)
~ I may have vasculitis in my veins caused by inflammation of my arteries (can cause stroke or blood clots)
~ High blood pressure
~ Ears & face flushing
~ Burning sensations mostly in legs (this is miserable, feels like I'm on fire)
~ Numbness & tingling in hands, feet, face & skull
~ Hands, feet & ankles swell
~ Hands & arm become numb (worse while sleeping)
~ Most of my organs, bones and muscles are inflammed and swollen (this causes a lot of pain too)
~ Arthritis-like pain in my bones and joints (this is ALOT worse in the winter)
~ Feet feel like every joint hurts and it is so painful to walk most days
~ Wake up stiff feeling in the morning (feel sore & aching all day)
~ Pelvic joints, knees & neck make popping sounds a lot
~ Lower back & hip pain (this is most bothersome!)
~ Sharp stabbing pains throughout body
~ Legs feel heavy & weak when I walk
~ Muscle twitches all over body (multiple times a day)
~ Muscle weakness (more noticeable in hands, arms and legs)
~ My balance is so bad that if I close my eyes I would fall
~ Motion sickness (sometimes just from watching tv)
~ Body temperature is unstable (get over heated very easily, also get really cold easily)
~ Bad night sweats (have to sleep with fan on, even when cold out)
~ Bladder problems (I can go as often as every ½ hr, if I wait too long it is very painful, doesn't feel like it ever completely empties, worse with caffeine)
~ IBS symptoms & nausea (I have a lot of stomach problems)
~ Severe mood swings, irritability & menstrual problems
~ Cognitive problems & severe memory problems (this symptom is my sadest)
~ Can't focus, make decisions, remember or recall words
~ Slower speech at times (sometimes tongue feels like I can't control it)
~ Headaches & head pressure (sharp stabbing pains)
~ Ear pressure, pain & tinnitus (ringing & clicking sounds)
~ Hearing loss (worse with background noise, or when someone isn't facing me)
~ Sensitivity to sound, light, touch, taste (most of my senses are higher now)
~ Can't handle being in a room with too many people talking at once or too much going on at one time
~ Vision has gotten a lot worse (also eye pains & burning)
~ Immune system is very weak (I am more prone to getting viruses and other illnesses that people with normal immune system could fight off)
~ Frequent sinus & respiratory infections
~ Difficulty swallowing (especially dry food & pills)
~ Swollen thyroid, other glands in my neck and head are swollen
~ I have sleep apnea now because everything in my throat is swollen
~ Acne worse & I get rashes
~ Developed a chemical sensitivity. Sensitive to medications (can't take Sudafed now), caffeine, alcohol, medical tape & band aids give me a chemical burn.
I am sure that I am forgetting some symptoms but you get the idea by now!!!
So I am sure you are wondering why I look fine and when you see me I am smiling? I have become a pro at hiding symptoms while in public. Unless I am having a good day (which are rare) then most likely I am not fine and am faking it. If I can't hide them then I stay home that day. Usually this is most days so I have learned to plan events a head of time so I can rest days before to be ready. So if you see me with a smile on my face just know that I am may not always be smiling underneath.
MY SYMPTOM LIST
Ok for my fellow lyme friends you will understand why this list is so long! But for my other friends and family this is really what I deal with! No kidding! I don't obviously have all these symptoms each day. They come and go. I do have some of them each day (fatigue, arthritis, cognitive problems to name a few).
The bacteria get into your brain and every organ, muscle, and bone in your body so it causes symptoms in your whole body. It has also effected all of my bodies systems, including immune system, endrocrine system, digestive system, nervous system. See this webpage for details about any of these systems. http://www.innerbody.com/htm/body.html
This also causes my hormone levels to be off & my metabolism to be very low so I can't lose weight.
SOME OF MY SYMPTOMS:
~ Lightheaded, dizzy spells & feeling spacey or drugged
~ Short of breath (worse with heat or when climbing steps)
~ Very severe dibilating fatigue
~ Heart palpitations & pounding heart beats
~ I get PVC's in my heart (irregular heart beats) (had cardiologist tests)
~ Possible heart murmur (need to get tested)
~ I may have vasculitis in my veins caused by inflammation of my arteries (can cause stroke or blood clots)
~ High blood pressure
~ Ears & face flushing
~ Burning sensations mostly in legs (this is miserable, feels like I'm on fire)
~ Numbness & tingling in hands, feet, face & skull
~ Hands, feet & ankles swell
~ Hands & arm become numb (worse while sleeping)
~ Most of my organs, bones and muscles are inflammed and swollen (this causes a lot of pain too)
~ Arthritis-like pain in my bones and joints (this is ALOT worse in the winter)
~ Feet feel like every joint hurts and it is so painful to walk most days
~ Wake up stiff feeling in the morning (feel sore & aching all day)
~ Pelvic joints, knees & neck make popping sounds a lot
~ Lower back & hip pain (this is most bothersome!)
~ Sharp stabbing pains throughout body
~ Legs feel heavy & weak when I walk
~ Muscle twitches all over body (multiple times a day)
~ Muscle weakness (more noticeable in hands, arms and legs)
~ My balance is so bad that if I close my eyes I would fall
~ Motion sickness (sometimes just from watching tv)
~ Body temperature is unstable (get over heated very easily, also get really cold easily)
~ Bad night sweats (have to sleep with fan on, even when cold out)
~ Bladder problems (I can go as often as every ½ hr, if I wait too long it is very painful, doesn't feel like it ever completely empties, worse with caffeine)
~ IBS symptoms & nausea (I have a lot of stomach problems)
~ Severe mood swings, irritability & menstrual problems
~ Cognitive problems & severe memory problems (this symptom is my sadest)
~ Can't focus, make decisions, remember or recall words
~ Slower speech at times (sometimes tongue feels like I can't control it)
~ Headaches & head pressure (sharp stabbing pains)
~ Ear pressure, pain & tinnitus (ringing & clicking sounds)
~ Hearing loss (worse with background noise, or when someone isn't facing me)
~ Sensitivity to sound, light, touch, taste (most of my senses are higher now)
~ Can't handle being in a room with too many people talking at once or too much going on at one time
~ Vision has gotten a lot worse (also eye pains & burning)
~ Immune system is very weak (I am more prone to getting viruses and other illnesses that people with normal immune system could fight off)
~ Frequent sinus & respiratory infections
~ Difficulty swallowing (especially dry food & pills)
~ Swollen thyroid, other glands in my neck and head are swollen
~ I have sleep apnea now because everything in my throat is swollen
~ Acne worse & I get rashes
~ Developed a chemical sensitivity. Sensitive to medications (can't take Sudafed now), caffeine, alcohol, medical tape & band aids give me a chemical burn.
I am sure that I am forgetting some symptoms but you get the idea by now!!!
So I am sure you are wondering why I look fine and when you see me I am smiling? I have become a pro at hiding symptoms while in public. Unless I am having a good day (which are rare) then most likely I am not fine and am faking it. If I can't hide them then I stay home that day. Usually this is most days so I have learned to plan events a head of time so I can rest days before to be ready. So if you see me with a smile on my face just know that I am may not always be smiling underneath.
Bartonella Co-infection (written 01/08/09)
Thursday, January 08, 2009
BARTONELLA (Transmitted by ticks & fleas)
This is just one of the many co-infections that people with Lyme Disease can have. I happen to have this one along with Lyme so this not only complicates treatment but it makes my symptoms worse.
Here are some common names. There are multiple strands so you may find other names when researching: Bartonellosis AKA Bartonella AKA Cat Scratch Fever
Common symptoms of bartonellosis include:
~ Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
~ Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
~ Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
~ Headaches, especially frontal (often confused with sinus) or on top of head
~ Eye symptoms including episodes of blurred vision, red eyes, dry eyes
~ Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
~ Sore throats (recurring)
~ Swollen glands, especially neck and under arms
~ Anxiety and worry attacks; others perceive as "very anxious"
~ Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
~ Poor sleep (especially difficulty falling asleep); poor sleep quality
~ Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
~ Muscle pains especially the calves; may be twitching and cramping also
~ Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
~ Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
~ Tremors and/or muscle twitching
~ Heart palpitations and strange chest pains
~ Episodes of breathlessness
~ Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
~ Gastrointestinal symptoms, abdominal pain and acid reflux
~ Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
************************************************************
http://thehumansideoflyme.net/viewarticle.php?aid=62
Quite surprising to many physicians, bartonellosis can cause major central nervous system damage, similar in some aspects to the aforementioned Lyme neuroborreliosis. Lyme and bartonellosis symptoms may include encephalitis signified by headaches, major memory loss, rages, seizures, and coma, as well as inflammation of the heart, abdominal pain, bone lesions, and loss of vision.
Until recent years, Bartonella, at onset of infection an endothelial and subsequent red blood cells infector, was considered to cause a relatively benign and common disease otherwise known as cat scratch disease. Now that ticks have become significant transmitters of Bartonella infections into humans, this vectoring appears to amplify victims' general Lyme symptoms, and quite likely amplifies GI tract lining symptoms as well.
************************************************************
Other good websites I found:
http://www.lymeinfo.net/bartonella.html
http://www.sciencedaily.com/releases/2008/11/081123222844.htm
BARTONELLA (Transmitted by ticks & fleas)
This is just one of the many co-infections that people with Lyme Disease can have. I happen to have this one along with Lyme so this not only complicates treatment but it makes my symptoms worse.
Here are some common names. There are multiple strands so you may find other names when researching: Bartonellosis AKA Bartonella AKA Cat Scratch Fever
Common symptoms of bartonellosis include:
~ Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
~ Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
~ Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
~ Headaches, especially frontal (often confused with sinus) or on top of head
~ Eye symptoms including episodes of blurred vision, red eyes, dry eyes
~ Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
~ Sore throats (recurring)
~ Swollen glands, especially neck and under arms
~ Anxiety and worry attacks; others perceive as "very anxious"
~ Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
~ Poor sleep (especially difficulty falling asleep); poor sleep quality
~ Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
~ Muscle pains especially the calves; may be twitching and cramping also
~ Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
~ Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
~ Tremors and/or muscle twitching
~ Heart palpitations and strange chest pains
~ Episodes of breathlessness
~ Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
~ Gastrointestinal symptoms, abdominal pain and acid reflux
~ Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
************************************************************
http://thehumansideoflyme.net/viewarticle.php?aid=62
Quite surprising to many physicians, bartonellosis can cause major central nervous system damage, similar in some aspects to the aforementioned Lyme neuroborreliosis. Lyme and bartonellosis symptoms may include encephalitis signified by headaches, major memory loss, rages, seizures, and coma, as well as inflammation of the heart, abdominal pain, bone lesions, and loss of vision.
Until recent years, Bartonella, at onset of infection an endothelial and subsequent red blood cells infector, was considered to cause a relatively benign and common disease otherwise known as cat scratch disease. Now that ticks have become significant transmitters of Bartonella infections into humans, this vectoring appears to amplify victims' general Lyme symptoms, and quite likely amplifies GI tract lining symptoms as well.
************************************************************
Other good websites I found:
http://www.lymeinfo.net/bartonella.html
http://www.sciencedaily.com/releases/2008/11/081123222844.htm
My Lyme Update (written 12/23/08)
Tuesday, December 23, 2008
MY LYME UPDATE (12/08)
Ok so I posted a blog before about my mom having Lyme too. Well the more I think this about this and we discuss it the more we are convinced that we have both had Lyme for a long time. I may have had it since I was a child.
With that being said I am concerned about my kids. If I had this before I had them then they may have it also. All of them have health problems of some sort. At one point in time I wondered if something was wrong with our house. Cause we were all having some weird health troubles. Along with mood problems, depression, anxiety, anger issues. Just seemed off to me. Anyways, so I have talked with many parents who have passed Lyme to their children and most of them don't get sick until they are older. It can lay dormant for many years. Then it can become active during puberty or a tramatic event or surgery. This is the case with many diseases. (I have done a lot of research on diseases)
Brandon has Aspergers which is a form of Autism. There is a foundation called Lyme Induced Autism. Check out this web site: http://www.lymeinducedautism.com/
He also has had many of the Lyme symptoms most of his life and worse recently. He has been through lots of testing lately to try to figure out what is going on and none have showed anything. He hasn't been tested for Lyme yet. I pray to God that he doesn't have it. But I have a bad gut feeling that he does. I had the same feeling about myself and my mom and I was right.
I also fear that Bryan has it from me. Yes, it is said to be transmitted that way too ;) If you think about it...it's a bacteria...it could be transmitted that way and to unborn babies. Yes, he has many symptoms too (even though he won't admit it). Some I fear are getting worse more recently. So I would like him to get tested because if he has it and gets as sick as I am then we are totally screwed!! Two people sick and not working = no house or food!!
So I started showing true signs of being sick a few years ago. But I have had many chronic health problems since I was a child. The same is true for my kids. I have to test them to be sure. Because if they have it and I don't test them then they become sick like I am and it is my fault. If they have it then I would say that Brandon has had an active form his whole life. He has had many chronic illnesses since he was a baby.
Along with Aspergers he has severe sensory problems (sensitive to pain, light, sound, heat, textures) He has anxiety, depression, irritability, asthma, severe allergies, chronic infections, memory problems, speech problems, letter and number reversals, vision problems include..double vision, involuntary eye movements, sensitive to light (Lyme loves the eyes) He gets headaches, motion sickness, vertigo and nausea. He has fatigue, weight issues, rashes, stomach problems, various aches and pains. (I am sure I am missing something) Although many of these can be non-lyme...its the fact that he has multiple symptoms together like I do that make me think this. These are all Lyme symptoms by the way.
Ok so that is my latest update...I am still on oral antibiotics. Not sure if it is helping at all yet? I had some of my energy back for a short time but it didn't last. It's been about 2 months so far. Not sure about switching doctors yet? Still concidering it. I am going with my mom to her doctor in January. So I will see what I think of him then.
Update 12/26: I just found out I also have Bartonella (Cat Scratch Fever). It's another infection that ticks carry (called a co-infection). This will complicate my treatment now with both of them. I also suspect that I may have 1 other co-infection but the test was negative so I am not sure. The tests aren't always reliable.
Happy Holidays to everyone!!
MY LYME UPDATE (12/08)
Ok so I posted a blog before about my mom having Lyme too. Well the more I think this about this and we discuss it the more we are convinced that we have both had Lyme for a long time. I may have had it since I was a child.
With that being said I am concerned about my kids. If I had this before I had them then they may have it also. All of them have health problems of some sort. At one point in time I wondered if something was wrong with our house. Cause we were all having some weird health troubles. Along with mood problems, depression, anxiety, anger issues. Just seemed off to me. Anyways, so I have talked with many parents who have passed Lyme to their children and most of them don't get sick until they are older. It can lay dormant for many years. Then it can become active during puberty or a tramatic event or surgery. This is the case with many diseases. (I have done a lot of research on diseases)
Brandon has Aspergers which is a form of Autism. There is a foundation called Lyme Induced Autism. Check out this web site: http://www.lymeinducedautism.com/
He also has had many of the Lyme symptoms most of his life and worse recently. He has been through lots of testing lately to try to figure out what is going on and none have showed anything. He hasn't been tested for Lyme yet. I pray to God that he doesn't have it. But I have a bad gut feeling that he does. I had the same feeling about myself and my mom and I was right.
I also fear that Bryan has it from me. Yes, it is said to be transmitted that way too ;) If you think about it...it's a bacteria...it could be transmitted that way and to unborn babies. Yes, he has many symptoms too (even though he won't admit it). Some I fear are getting worse more recently. So I would like him to get tested because if he has it and gets as sick as I am then we are totally screwed!! Two people sick and not working = no house or food!!
So I started showing true signs of being sick a few years ago. But I have had many chronic health problems since I was a child. The same is true for my kids. I have to test them to be sure. Because if they have it and I don't test them then they become sick like I am and it is my fault. If they have it then I would say that Brandon has had an active form his whole life. He has had many chronic illnesses since he was a baby.
Along with Aspergers he has severe sensory problems (sensitive to pain, light, sound, heat, textures) He has anxiety, depression, irritability, asthma, severe allergies, chronic infections, memory problems, speech problems, letter and number reversals, vision problems include..double vision, involuntary eye movements, sensitive to light (Lyme loves the eyes) He gets headaches, motion sickness, vertigo and nausea. He has fatigue, weight issues, rashes, stomach problems, various aches and pains. (I am sure I am missing something) Although many of these can be non-lyme...its the fact that he has multiple symptoms together like I do that make me think this. These are all Lyme symptoms by the way.
Ok so that is my latest update...I am still on oral antibiotics. Not sure if it is helping at all yet? I had some of my energy back for a short time but it didn't last. It's been about 2 months so far. Not sure about switching doctors yet? Still concidering it. I am going with my mom to her doctor in January. So I will see what I think of him then.
Update 12/26: I just found out I also have Bartonella (Cat Scratch Fever). It's another infection that ticks carry (called a co-infection). This will complicate my treatment now with both of them. I also suspect that I may have 1 other co-infection but the test was negative so I am not sure. The tests aren't always reliable.
Happy Holidays to everyone!!
Feeling Angry! (written 11/28/08)
Friday, November 28, 2008
FEELING ANGRY...
Ok so I am trying to be thankful this holiday season for having a diagnosis. But it is very tough to do when you don't know what is going to happen to you.
For those of you who don't know...finding a lyme doctor is very difficult. There are very few of them because of the controversy in long term treatments. Once you do find one most people have to travel to another state to see them. Most of them don't take insurance because they could lose their license if they give long term antibiotic treatments. This is because the insurance companies don't want to pay. And the government has made it so easy for this to happen. The current guidelines for this disease are absolutely absurd!! People are only allowed a few weeks or a month of medicine. Then they are concidered cured. Which if you have had this a long time that is impossible. This bacteria leaves your blood stream and burrows into your body, organs, tissues, brain, muscles, bones...etc. Then it can hide in a cyst form so the antibiotics can not kill it.
So right now I am feeling angry. Angry that in the United States of America people can not get proper treatment for their illness. People are dying! Children are dying! There is only 1 pediatric lyme specialist in the entire world! And he is in jeapordy of lossing his license right now.
I am lucky to have a doctor that is only 1/2 hr into Pa. But he is under a close watch with the insurance companies right now too. So he isn't treating me aggressive enough. So I may need to find someone else and have to travel and pay out of pocket. I am also on antibiotics right now. But I don't know for how long my insurance will pay for it.
It is an awful feeling to live each day not knowing what your future will be. Feeling like you may always be sick or worse you may die from this.
A women on a YouTube video on my page died not too long ago from heart failure in her sleep at age 41. I have this in my heart now so you can imagine how scary that is?
Anyways...I just needed to vent. So many people don't understand how bad this disease is and how hard it is to get treatment. I have met hundreds of people on line. All these people are having the same problems that I have. Some are worse and some are better. It depends on if you can get treatment and how your body responds to it.
So it is pretty bad when you feel like you would rather have cancer! Yes, it is an awful illness. I have watched many people I love die from it. But at least it is well known about in the public. There is no controversary about treatments. And people are willing to help you get better. The feeling of unknown is the worst feeling!
FEELING ANGRY...
Ok so I am trying to be thankful this holiday season for having a diagnosis. But it is very tough to do when you don't know what is going to happen to you.
For those of you who don't know...finding a lyme doctor is very difficult. There are very few of them because of the controversy in long term treatments. Once you do find one most people have to travel to another state to see them. Most of them don't take insurance because they could lose their license if they give long term antibiotic treatments. This is because the insurance companies don't want to pay. And the government has made it so easy for this to happen. The current guidelines for this disease are absolutely absurd!! People are only allowed a few weeks or a month of medicine. Then they are concidered cured. Which if you have had this a long time that is impossible. This bacteria leaves your blood stream and burrows into your body, organs, tissues, brain, muscles, bones...etc. Then it can hide in a cyst form so the antibiotics can not kill it.
So right now I am feeling angry. Angry that in the United States of America people can not get proper treatment for their illness. People are dying! Children are dying! There is only 1 pediatric lyme specialist in the entire world! And he is in jeapordy of lossing his license right now.
I am lucky to have a doctor that is only 1/2 hr into Pa. But he is under a close watch with the insurance companies right now too. So he isn't treating me aggressive enough. So I may need to find someone else and have to travel and pay out of pocket. I am also on antibiotics right now. But I don't know for how long my insurance will pay for it.
It is an awful feeling to live each day not knowing what your future will be. Feeling like you may always be sick or worse you may die from this.
A women on a YouTube video on my page died not too long ago from heart failure in her sleep at age 41. I have this in my heart now so you can imagine how scary that is?
Anyways...I just needed to vent. So many people don't understand how bad this disease is and how hard it is to get treatment. I have met hundreds of people on line. All these people are having the same problems that I have. Some are worse and some are better. It depends on if you can get treatment and how your body responds to it.
So it is pretty bad when you feel like you would rather have cancer! Yes, it is an awful illness. I have watched many people I love die from it. But at least it is well known about in the public. There is no controversary about treatments. And people are willing to help you get better. The feeling of unknown is the worst feeling!
My Mom has Lyme Disease too (written 11/21/08)
Friday, November 21, 2008
MY MOM HAS LYME TOO!!
Ok so the latest news...My mom has Lyme Disease too! So how interesting is that? Did we both get it together (she has been showing symptoms longer) or is it a coincidence? Or is this problem bigger then we know? Just gets you thinking!!
So she has been sick since at least the early 90's. Going from dr to dr and getting a ton of misdiagnosis. When I was old enough to understand I thought to myself "How can she have so many different things wrong" and I thought they must be related. She tried to figure it out but then felt hopeless and figured she had to live with it (Whatever it was?) That is what happens to people who can't get help from doctors. You try to figure it out yourself but you keep getting pushed down and told you are crazy. Then you are lucky if you have support of family and friends. Most think you are crazy too or they blow it off as nothing. So you start to think it is true.
Well then I started getting sick many years later. I noticed I was getting similar problems as her. That really worried me but also got me more determined to figure it out (You can read my story on here to see how that went.) But I keep going and going regardless of the lack of support or the belief or the doctors telling me I was crazy. I knew I was sick, I knew she was sick and I wasn't gonna get any answers from these people with so called medical degrees. So I was gonna figure it out or die trying. I felt like I was dying most days anyway. And what did I have to loose? I mean I did nothing all day anyways cause I was too fatigued and in pain. So I search on my computer for hours, months, days, and even years. Yes, I said years!! When I wanted to give up something would give me strength to move on. I truely believe I was guided by my Nonnie (my grandma who died that I was VERY close to).
So anyways, I can go on and on...but the point is that I figured it out. Me with no medical degree. I probably saved my own life...but more importantly I know I saved my mom's life. That is something I can feel proud of!
So I will ask her for her story when she is up to it and post it on a blog. Check back later. In the mean time NEVER EVER give up!!!
MY MOM HAS LYME TOO!!
Ok so the latest news...My mom has Lyme Disease too! So how interesting is that? Did we both get it together (she has been showing symptoms longer) or is it a coincidence? Or is this problem bigger then we know? Just gets you thinking!!
So she has been sick since at least the early 90's. Going from dr to dr and getting a ton of misdiagnosis. When I was old enough to understand I thought to myself "How can she have so many different things wrong" and I thought they must be related. She tried to figure it out but then felt hopeless and figured she had to live with it (Whatever it was?) That is what happens to people who can't get help from doctors. You try to figure it out yourself but you keep getting pushed down and told you are crazy. Then you are lucky if you have support of family and friends. Most think you are crazy too or they blow it off as nothing. So you start to think it is true.
Well then I started getting sick many years later. I noticed I was getting similar problems as her. That really worried me but also got me more determined to figure it out (You can read my story on here to see how that went.) But I keep going and going regardless of the lack of support or the belief or the doctors telling me I was crazy. I knew I was sick, I knew she was sick and I wasn't gonna get any answers from these people with so called medical degrees. So I was gonna figure it out or die trying. I felt like I was dying most days anyway. And what did I have to loose? I mean I did nothing all day anyways cause I was too fatigued and in pain. So I search on my computer for hours, months, days, and even years. Yes, I said years!! When I wanted to give up something would give me strength to move on. I truely believe I was guided by my Nonnie (my grandma who died that I was VERY close to).
So anyways, I can go on and on...but the point is that I figured it out. Me with no medical degree. I probably saved my own life...but more importantly I know I saved my mom's life. That is something I can feel proud of!
So I will ask her for her story when she is up to it and post it on a blog. Check back later. In the mean time NEVER EVER give up!!!
My Lyme Disease Story (written on 11/8/08)
Saturday, November 08, 2008
MY LYME DISEASE STORY (Updated 1/7)
So I am really not sure how long I've had Lyme and I don't recall a bite either? My mother has Lyme too. I figured that out after I figured out that I had it. I started to develop the same symptoms that she has had for over 20 years. This is when I knew that we had something wrong and we both had the same thing. Luckily I didn't give up until I figured it out. Here is my updated story.....I decided to make some additions to my previous story....it's long!!
First I want to say that we traveled and camped a lot when I was a child. I had several chronic health problems that started when I was young. Bad bloody noses to the point of going to the hospital to have my nose cauterized (not pleasant!) Bladder infections so bad that the doctor wanted to run tests on my kidneys (all I heard was big needle in your back and I was like hell no!), stomach problems, swollen glands, allergies, black-outs and dizzy spells, cavities every time I went the dentist (and still to this day), anxiety, depression, learning problems (sure I am forgetting a few). Now these were not just occasional problems. They were all chronic.
Fast forward to my 20's....got married and had 3 children (not necessarily in that order...LOL) For the most part I was healthy other then some of my childhood problems that stayed with me. My last son was born c-section in 1999 my grandmother died a year later. I started noticing changes in my health after my son was born. I used to joke that they didn't put me back together right since I had a c-section. But then my grandma died in 2000 and I was extremely close to her. So I was a mess. The most traumatic event I have been through. I always had anxiety and depression since I can remember. Well this put that in high gear. For years I kept feeling worse and then started to notice physical problems. I always excused them as grief or stress related.
In 2001 we moved and didn't have family around. My husband and I both worked and had 3 kids so it was stressful!! In about 2002 I started having severe stomach problems. Different then before. The pain was indescribable. Worse then labor!! Every time I would take a bite of food (no matter what it was) I would immediately get pains. They would consume my entire abdomen and shot into my back. I would load up on tums, gas pills, and motrin and pray it would go away. I did go to the hospital a few times. But nothing. I then found out that if I took acidophilus before every meal I was much better. So I did that for years. I was also having bladder problems. Having to go all the time!! Since I always had some stomach and bladder problems as a child I didn't think much of it. But then I started having memory problems. This was most odd because I was always known to have excellent memory! My family would ask me to remember things for them and it was never a problem. So I just figured it was stress and didn't think much more of it.
We moved back to our home town to be near family again in 2004. Some of this reasoning was because my depression was getting so bad. About 2005 I started to develop more odd symptoms that didn't seem related to the one's I already had. I started to get strange feet pain. At 1st I noticed it while exercising and just thought my shoes were too tight. But it got worse. I also was having knee problems. The left one would crackle when I went upstairs. My vision was getting significantly worse. I was also becoming more irritable and having bad mood swings. Along with menstrual problems. I had turned 30 that year and my doctor at the time said it was just because I was 30 now. I thought that was odd that I would turn 30 and just start to fall apart! I had lost a lot of weight with Weight Watchers earlier that year and was feeling pretty good for awhile. I got my real estate license in fall of 2005 and enjoyed working and meeting new people.
Early 2006 I started to get really fatigued and get sick a lot. It slowly got worse until I found myself staying home on the couch more then I was going to work. Everyone thought I was being lazy or depressed. I was depressed again but I was also very fatigued. It was just an overwhelming sense of exhaustion! Not like you are tired and need to sleep. It was different. I started to think something might be wrong with me. Soon after, I decided to see a therapist because my irritability and now depression were just too bad to handle. I was put on several different antidepressants. All of which didn't help and made me feel worse or have very bad side effects. One of them gave me a really bad rash and I had to go to the hospital. Now I find out I have developed sensitivity to meds. Something new! I started to gain weight and figured it was from the meds. It was really bad, like 10 lbs a month for about 5 or 6 months!! So now I am really depressed, overweight, tired all the time and slowly new symptoms are coming on. I am thinking at this point that I might be going crazy! Something weird happened to me after I gained weight. I started to get this heavy feeling in my body. My legs especially. I thought it was because I gained a lot in a short time. But now I think it was the Lyme.
Late 2006 I started getting numbness, tingling and muscle spasms. Then I started to really think something was wrong. Maybe MS, ALS, cancer runs heavily in my family?? But how could all these strange symptoms be related? It just didn't seem possible. I found a new doctor since mine thought I was having problems just because I was 30! So the new doctor did run a few tests, lupus being 1 of them. I thought he said Lyme too but I didn't see it on my lab results? He sent me for a sleep test because I started having really bad insomnia at this point. So I did test positive for sleep apnea. I just figured it was because I gained weight. He did say that my uvula (thing in the back of the throat) appeared enlarged.
I wasn't satisfied that this was the reason for all of my symptoms so I went to my husbands doctor next. He did an MRI to rule out MS and lots of blood work that came back normal. He sent me from specialist to specialist for over a year.
Early 2007 I decided to take on another job doing seasonal taxes. Real estate market was bad and I needed some money. It was going ok at 1st but then I started waking up about once a week feeling like I had the flu. I couldn't get out of bed at all. I also had arthritis symptoms and bone pain. Then while working at this job I started to have really bad cognitive problems. Just out of the blue I couldn't think straight. I was confused and I couldn't work. I couldn't remember things that people just told me. It was really scary! I knew something was wrong and the doctors weren't figuring it out. So I started researching on line. I can't even count the amount of hours I spent researching. My family and friends thought I was insane!! Every time I would come up with a new theory but my symptoms never always 100% fit the disease. I did run across Lyme a few times and it did fit my symptoms but I didn't remember getting bit so I moved on to the next disease. I read about every disease, cancer, autoimmune disease you can think of. It was insane! Eventually I ran out of things that it could be.
Summer of 2008 I started to get heart palpitations. I had the whole cardiac work up and they only found PVC's of unknown cause. I was also getting shortness of breath. At some point my list started to include temperature sensitivities, hearing problems, troubles swallowing, night sweats...and the list goes on and on. I decided I was just broken! My adrenal gland, my metabolism, my hormones, my entire body was just "broke"!! What was causing this? Would I ever figure it out? Or was I going to die? I was afraid to go to bed at night. Started thinking about writing letters to my family just in case :(
At this point I am now unable to work and can barely function most days. Thank goodness something took me back to the Lyme websites. This time I decided to read others stories. I couldn't believe how much it sounded like me and that many people didn't remember being bit. So I thought, "What do I have to lose?" I found an LLMD (special Lyme Literate doctor) and luckily for me he is only about 30 miles away! I called them and they got me in that week. He asked me to bring details about my symptoms. So I typed up a list on my computer and couldn't believe that that I had sooo many symptoms (see my symptom blog). It was an entire page long typed! At my appointment as I filled out the paperwork I check marked about 90% of the symptoms. (I think my mouth dropped to the floor!) Then he sat with me for hours and talked and listened (WOW a doctor that listened...what a concept!) We were convinced that I had it and just needed a test to confirm. But the best part was after years of being shot down someone FINALLY validated me!!!
So I tested CDC (Center for Disease Control) lyme positive in October of 08 from Igenex lab in CA (special lyme lab). If is very hard to test positive by CDC's testing criteria. They are very stricked and that is why many people test negative but still have it. They test your blood for lyme antibodies and they require 5 specific types. If you have less then 5 or if you have 5 different types they say negative. I say "why do you have any antibodies to lyme if you don't have it?" Duh!! So ticks carry co-infections (other bacteria). My co-infection tests were done by a local lab so I am not sure they are accurate? But I did test positive for Bartonella (see my blog on this co-infection).
I know my story is long....as I am sure many people with Lyme have very long stories! It is actually longer but this is the short version :) There is no cure for lyme. It is treatable with antibiotics. The bacteria can hide as a cyst & you can go in remission but it can come back. So I am not sure if I will get better. Even if it does go anyway I might have some permanent damage to my body from it. I am currently on an antibiotic called doxycycline 400 mg a day. Not sure if it is working & its only been a few months. I do have some extra days with energy but still feel like crap the rest of the days. I may need to get a new doctor to see about IV treatments. Since I have many neurological symptoms I hear IV works best. It is a very long road to recovery. Many people I have met have been sick for years and are still sick. It is possible to never get better. They go on and off of antibiotics for years. You can get yeast from too many antiobiotics so you have to take a lot of special vitamins and herbs. Also when the bacteria die they release toxins in your body. So you get sicker! So I also have to detox. Learning all sorts of new stuff!
In the mean time I am very concerned that I may have passed this to my children and husband. My youngest son being the most symptomatic right now. I am looking into the best ways to get them tested. (see my other blog about this)
I have learned so much about life in general on this journey so far. I have met so many others with Lyme that are some of the best people I have ever known! I am angry about the way we are treated from doctors and the public. And I am sick and tired of being sick and tired! But I don't think I would trade this experience for the world. It has changed me as a person. I like myself so much more now. Ok so now I just have to get better :) Thank you for reading my story!
By the way....There is A LOT of controversy regarding lyme and it is a very long story. I am acutally reading a book about it right now called "Cure Unknown". I also have a documentary DVD that explains this a lot. It's called "Under Our Skin". If you would like to watch please let me know!!
MY LYME DISEASE STORY (Updated 1/7)
So I am really not sure how long I've had Lyme and I don't recall a bite either? My mother has Lyme too. I figured that out after I figured out that I had it. I started to develop the same symptoms that she has had for over 20 years. This is when I knew that we had something wrong and we both had the same thing. Luckily I didn't give up until I figured it out. Here is my updated story.....I decided to make some additions to my previous story....it's long!!
First I want to say that we traveled and camped a lot when I was a child. I had several chronic health problems that started when I was young. Bad bloody noses to the point of going to the hospital to have my nose cauterized (not pleasant!) Bladder infections so bad that the doctor wanted to run tests on my kidneys (all I heard was big needle in your back and I was like hell no!), stomach problems, swollen glands, allergies, black-outs and dizzy spells, cavities every time I went the dentist (and still to this day), anxiety, depression, learning problems (sure I am forgetting a few). Now these were not just occasional problems. They were all chronic.
Fast forward to my 20's....got married and had 3 children (not necessarily in that order...LOL) For the most part I was healthy other then some of my childhood problems that stayed with me. My last son was born c-section in 1999 my grandmother died a year later. I started noticing changes in my health after my son was born. I used to joke that they didn't put me back together right since I had a c-section. But then my grandma died in 2000 and I was extremely close to her. So I was a mess. The most traumatic event I have been through. I always had anxiety and depression since I can remember. Well this put that in high gear. For years I kept feeling worse and then started to notice physical problems. I always excused them as grief or stress related.
In 2001 we moved and didn't have family around. My husband and I both worked and had 3 kids so it was stressful!! In about 2002 I started having severe stomach problems. Different then before. The pain was indescribable. Worse then labor!! Every time I would take a bite of food (no matter what it was) I would immediately get pains. They would consume my entire abdomen and shot into my back. I would load up on tums, gas pills, and motrin and pray it would go away. I did go to the hospital a few times. But nothing. I then found out that if I took acidophilus before every meal I was much better. So I did that for years. I was also having bladder problems. Having to go all the time!! Since I always had some stomach and bladder problems as a child I didn't think much of it. But then I started having memory problems. This was most odd because I was always known to have excellent memory! My family would ask me to remember things for them and it was never a problem. So I just figured it was stress and didn't think much more of it.
We moved back to our home town to be near family again in 2004. Some of this reasoning was because my depression was getting so bad. About 2005 I started to develop more odd symptoms that didn't seem related to the one's I already had. I started to get strange feet pain. At 1st I noticed it while exercising and just thought my shoes were too tight. But it got worse. I also was having knee problems. The left one would crackle when I went upstairs. My vision was getting significantly worse. I was also becoming more irritable and having bad mood swings. Along with menstrual problems. I had turned 30 that year and my doctor at the time said it was just because I was 30 now. I thought that was odd that I would turn 30 and just start to fall apart! I had lost a lot of weight with Weight Watchers earlier that year and was feeling pretty good for awhile. I got my real estate license in fall of 2005 and enjoyed working and meeting new people.
Early 2006 I started to get really fatigued and get sick a lot. It slowly got worse until I found myself staying home on the couch more then I was going to work. Everyone thought I was being lazy or depressed. I was depressed again but I was also very fatigued. It was just an overwhelming sense of exhaustion! Not like you are tired and need to sleep. It was different. I started to think something might be wrong with me. Soon after, I decided to see a therapist because my irritability and now depression were just too bad to handle. I was put on several different antidepressants. All of which didn't help and made me feel worse or have very bad side effects. One of them gave me a really bad rash and I had to go to the hospital. Now I find out I have developed sensitivity to meds. Something new! I started to gain weight and figured it was from the meds. It was really bad, like 10 lbs a month for about 5 or 6 months!! So now I am really depressed, overweight, tired all the time and slowly new symptoms are coming on. I am thinking at this point that I might be going crazy! Something weird happened to me after I gained weight. I started to get this heavy feeling in my body. My legs especially. I thought it was because I gained a lot in a short time. But now I think it was the Lyme.
Late 2006 I started getting numbness, tingling and muscle spasms. Then I started to really think something was wrong. Maybe MS, ALS, cancer runs heavily in my family?? But how could all these strange symptoms be related? It just didn't seem possible. I found a new doctor since mine thought I was having problems just because I was 30! So the new doctor did run a few tests, lupus being 1 of them. I thought he said Lyme too but I didn't see it on my lab results? He sent me for a sleep test because I started having really bad insomnia at this point. So I did test positive for sleep apnea. I just figured it was because I gained weight. He did say that my uvula (thing in the back of the throat) appeared enlarged.
I wasn't satisfied that this was the reason for all of my symptoms so I went to my husbands doctor next. He did an MRI to rule out MS and lots of blood work that came back normal. He sent me from specialist to specialist for over a year.
Early 2007 I decided to take on another job doing seasonal taxes. Real estate market was bad and I needed some money. It was going ok at 1st but then I started waking up about once a week feeling like I had the flu. I couldn't get out of bed at all. I also had arthritis symptoms and bone pain. Then while working at this job I started to have really bad cognitive problems. Just out of the blue I couldn't think straight. I was confused and I couldn't work. I couldn't remember things that people just told me. It was really scary! I knew something was wrong and the doctors weren't figuring it out. So I started researching on line. I can't even count the amount of hours I spent researching. My family and friends thought I was insane!! Every time I would come up with a new theory but my symptoms never always 100% fit the disease. I did run across Lyme a few times and it did fit my symptoms but I didn't remember getting bit so I moved on to the next disease. I read about every disease, cancer, autoimmune disease you can think of. It was insane! Eventually I ran out of things that it could be.
Summer of 2008 I started to get heart palpitations. I had the whole cardiac work up and they only found PVC's of unknown cause. I was also getting shortness of breath. At some point my list started to include temperature sensitivities, hearing problems, troubles swallowing, night sweats...and the list goes on and on. I decided I was just broken! My adrenal gland, my metabolism, my hormones, my entire body was just "broke"!! What was causing this? Would I ever figure it out? Or was I going to die? I was afraid to go to bed at night. Started thinking about writing letters to my family just in case :(
At this point I am now unable to work and can barely function most days. Thank goodness something took me back to the Lyme websites. This time I decided to read others stories. I couldn't believe how much it sounded like me and that many people didn't remember being bit. So I thought, "What do I have to lose?" I found an LLMD (special Lyme Literate doctor) and luckily for me he is only about 30 miles away! I called them and they got me in that week. He asked me to bring details about my symptoms. So I typed up a list on my computer and couldn't believe that that I had sooo many symptoms (see my symptom blog). It was an entire page long typed! At my appointment as I filled out the paperwork I check marked about 90% of the symptoms. (I think my mouth dropped to the floor!) Then he sat with me for hours and talked and listened (WOW a doctor that listened...what a concept!) We were convinced that I had it and just needed a test to confirm. But the best part was after years of being shot down someone FINALLY validated me!!!
So I tested CDC (Center for Disease Control) lyme positive in October of 08 from Igenex lab in CA (special lyme lab). If is very hard to test positive by CDC's testing criteria. They are very stricked and that is why many people test negative but still have it. They test your blood for lyme antibodies and they require 5 specific types. If you have less then 5 or if you have 5 different types they say negative. I say "why do you have any antibodies to lyme if you don't have it?" Duh!! So ticks carry co-infections (other bacteria). My co-infection tests were done by a local lab so I am not sure they are accurate? But I did test positive for Bartonella (see my blog on this co-infection).
I know my story is long....as I am sure many people with Lyme have very long stories! It is actually longer but this is the short version :) There is no cure for lyme. It is treatable with antibiotics. The bacteria can hide as a cyst & you can go in remission but it can come back. So I am not sure if I will get better. Even if it does go anyway I might have some permanent damage to my body from it. I am currently on an antibiotic called doxycycline 400 mg a day. Not sure if it is working & its only been a few months. I do have some extra days with energy but still feel like crap the rest of the days. I may need to get a new doctor to see about IV treatments. Since I have many neurological symptoms I hear IV works best. It is a very long road to recovery. Many people I have met have been sick for years and are still sick. It is possible to never get better. They go on and off of antibiotics for years. You can get yeast from too many antiobiotics so you have to take a lot of special vitamins and herbs. Also when the bacteria die they release toxins in your body. So you get sicker! So I also have to detox. Learning all sorts of new stuff!
In the mean time I am very concerned that I may have passed this to my children and husband. My youngest son being the most symptomatic right now. I am looking into the best ways to get them tested. (see my other blog about this)
I have learned so much about life in general on this journey so far. I have met so many others with Lyme that are some of the best people I have ever known! I am angry about the way we are treated from doctors and the public. And I am sick and tired of being sick and tired! But I don't think I would trade this experience for the world. It has changed me as a person. I like myself so much more now. Ok so now I just have to get better :) Thank you for reading my story!
By the way....There is A LOT of controversy regarding lyme and it is a very long story. I am acutally reading a book about it right now called "Cure Unknown". I also have a documentary DVD that explains this a lot. It's called "Under Our Skin". If you would like to watch please let me know!!
Subscribe to:
Posts (Atom)
