Now the wait, wait on the phone to ring....
Waiting is something that none of us want to do for almost anything in life, we are spoiled! I was anxiously waiting on the phone to ring to be able to travel and take Hope to a LLMD to get a clinical diagnosis of whether or not she has Lyme Disease. The day finally came and the receptionist called and said, "Mrs Nichols you can come on May 20th!" I was thinking but what about school, exams, then the receptionist said or the next available appointment is the middle of July! "We will be there!"
Hope and I load up travel for 5 days. (Ben had to work the business' and preach!) We arrived at the appointment on that Monday, May 20,2013, that morning I just prayed God give me the strength and the grace that I need today because I know already in my heart that I was going to hear the words, "Mrs Nichols your daughter has Lyme Disease." It is not the words that any parent ever wants to hear about their child, but at this point with hope being sick for 1.5 years and the not knowing it was if a burden had been lifted!!!! Sounds totally crazy but I felt at peace! I knew that God was there in the doctor's office, I knew that God spoke through that doctor when he was optimistic on the treatments for Hope. I knew that for the first time that one of my prayers had been answered, there is hope for Hope!
More later on what all this now means for Hope.....
Monday, May 27, 2013
God moves on our behalf even when we don't know it......
God moves on our behalf even when we don't know it......
So the search began, searching for a LLMD. You might be thinking, well what is the BIG deal, you just get out the yellow page phone app, Google your local doctors and bam there you have it! Wrong! Here is the key note about Lyme disease and pay close attention. IF you discover that tick bite right away treatment is in the 28 to 42 day range. But if you have gone for longer, months, years without a diagnosis the bacteria has grown in your body and you need treatments for months to years for recovery depending on many circumstances.
This is where the general public gets confused so easily, why? Because as creatures of habit we turn to Google and we look at the very first few sites that come up for Lyme Disease! (I am not criticizing those websites) we read the symptoms, we tend to think nothing a one time dose of antibiotic won't cure and we see the images of the bull's eye rash!
Here is where you, every family member, friend and even your enemies need a 101 lesson in Lyme Disease!
Most Lyme patients don't remember a tick bite! (remember mosquitoes and spiders carry it too!)
Most Lyme patients don't have a bull eye's rash!
Lyme can be any where in the USA!
The following is one of the best movie's for explaining Lyme Disease, how you get it, how to prevent it and what treatments may be needed and how to locate a LLMD
Under Our Skin
Keep in mind other Lyme patients have told me find a LLMD, my husband's cousin messages me on FB and ask me have I heard of Dr ____ in Birmingham, AL? I get the phone # and I call, the receptionist says, "No mam he is no longer accepting patients." I ask "What about Lyme patients?" she replies "No mam". So instead of hanging the phone up I ask for referrals. She then refers me to 3 different LLMD's and I start checking them out on the internet. They all look pretty interesting I call the first one ask some questions, call the 2nd one, and then the 3rd one I type in the last name and state that she gave me and there the doctor was on Google! I look this doctors website over, read the treatment protocol, credentials, and I call the phone # on the website. I talk to a very polite receptionist, ask questions set, and appointment and get on a waiting list. I then come back to the computer, and realize that the phone # of this doctor that I just called and the original phone # I had, does not match!!!! I use the reverse phone lookup and realize that the Birmingham receptionist gave me a phone # to a plastic surgeon, not a Lyme Doctor!!!!! BUT because the Lyme Doctor and the Plastic Surgeon had the SAME last names I found Hope's Lyme Doctor!!!
God moves on our behalf even when we don't know it......
Read more of the story....
So the search began, searching for a LLMD. You might be thinking, well what is the BIG deal, you just get out the yellow page phone app, Google your local doctors and bam there you have it! Wrong! Here is the key note about Lyme disease and pay close attention. IF you discover that tick bite right away treatment is in the 28 to 42 day range. But if you have gone for longer, months, years without a diagnosis the bacteria has grown in your body and you need treatments for months to years for recovery depending on many circumstances.
This is where the general public gets confused so easily, why? Because as creatures of habit we turn to Google and we look at the very first few sites that come up for Lyme Disease! (I am not criticizing those websites) we read the symptoms, we tend to think nothing a one time dose of antibiotic won't cure and we see the images of the bull's eye rash!
Here is where you, every family member, friend and even your enemies need a 101 lesson in Lyme Disease!
Most Lyme patients don't remember a tick bite! (remember mosquitoes and spiders carry it too!)
Most Lyme patients don't have a bull eye's rash!
Lyme can be any where in the USA!
The following is one of the best movie's for explaining Lyme Disease, how you get it, how to prevent it and what treatments may be needed and how to locate a LLMD
Under Our Skin
Keep in mind other Lyme patients have told me find a LLMD, my husband's cousin messages me on FB and ask me have I heard of Dr ____ in Birmingham, AL? I get the phone # and I call, the receptionist says, "No mam he is no longer accepting patients." I ask "What about Lyme patients?" she replies "No mam". So instead of hanging the phone up I ask for referrals. She then refers me to 3 different LLMD's and I start checking them out on the internet. They all look pretty interesting I call the first one ask some questions, call the 2nd one, and then the 3rd one I type in the last name and state that she gave me and there the doctor was on Google! I look this doctors website over, read the treatment protocol, credentials, and I call the phone # on the website. I talk to a very polite receptionist, ask questions set, and appointment and get on a waiting list. I then come back to the computer, and realize that the phone # of this doctor that I just called and the original phone # I had, does not match!!!! I use the reverse phone lookup and realize that the Birmingham receptionist gave me a phone # to a plastic surgeon, not a Lyme Doctor!!!!! BUT because the Lyme Doctor and the Plastic Surgeon had the SAME last names I found Hope's Lyme Doctor!!!
God moves on our behalf even when we don't know it......
Read more of the story....
I got to find a What? LLMD? What is that?
Once again I privately messaged friends and ministers that I knew would come before the throne of grace boldly on Hope's behalf telling them that I thought that is might be a possibility of Wilson's Syndrome of the thyroid or Lyme disease and letting them know that I had arranged several doctors appointments and was waiting on more lab reports.. The Lyme support group had told me that I needed to find a LLMD (Lyme Literate Medical Doctor) and get a "clinical diagnosis" of whether or not Lyme was present in her body. Do what? You mean to tell me you want me to drive most likely to the north eastern part of the USA to poke a needle in my daughter's arm and draw blood and send to a lab in CA to tell me IF she has Lyme? Are you crazy? More doctors to poke her,and tell her she ain't feeling the pain! blah, blah, blah..... wait, what Lyme can HIDE in your body!?!?!?!?!?!?
Lyme moves throughout a person's body and can hide from blood test! But wait Hope lives in Alabama! Yes she does! Folks most of the doctors in this whole blog except for one stated, "We don't have Lyme in Alabama". Doctors make mistakes, doctors are wrong, doctors mis-diagnosis for YEARS, otherwise why have I met several people in the past couple of weeks that reside in Alabama and have Lyme Disease? Ummmmm......
Lyme is NOT just a tick disease! You can get Lyme from ticks, mosquitoes, spiders and other flying insects. Think about it how many mosquitoes have you met that knew where the Mason Dixie line was? How many ticks have you met that knew where ALL state boundary lines were? You may think come on Sydney, you are just being foolish, think about it!
So HOW do you know if a person has Lyme disease? Read carefully and share this information with your friends.
Most Lyme patients don't even remember a tick bite!
Most Lyme patients NEVER have a bull eye's rash!
Lyme disease is in ALL 50 states and worldwide!
About 50% of Lyme patients have a FALSE negative blood test!
WAIT! What? You mean to tell me that when the nurse called me about my blood test that the test could be WRONG? Yep!
Okay so I need to find a LLMD, where the heck do ya find that?....
Read more of the story...
Lyme moves throughout a person's body and can hide from blood test! But wait Hope lives in Alabama! Yes she does! Folks most of the doctors in this whole blog except for one stated, "We don't have Lyme in Alabama". Doctors make mistakes, doctors are wrong, doctors mis-diagnosis for YEARS, otherwise why have I met several people in the past couple of weeks that reside in Alabama and have Lyme Disease? Ummmmm......
Lyme is NOT just a tick disease! You can get Lyme from ticks, mosquitoes, spiders and other flying insects. Think about it how many mosquitoes have you met that knew where the Mason Dixie line was? How many ticks have you met that knew where ALL state boundary lines were? You may think come on Sydney, you are just being foolish, think about it!
So HOW do you know if a person has Lyme disease? Read carefully and share this information with your friends.
Most Lyme patients don't even remember a tick bite!
Most Lyme patients NEVER have a bull eye's rash!
Lyme disease is in ALL 50 states and worldwide!
About 50% of Lyme patients have a FALSE negative blood test!
WAIT! What? You mean to tell me that when the nurse called me about my blood test that the test could be WRONG? Yep!
Lyme disease is known as the "great imitator". What does that mean? Folks I personally did not "get it" and understand that phrase until I have walked along side my daughter this past 1.5 years and I have been the mom to her to take care of her. Okay yeah, so? There are some days her joints hurt so bad I would think, what about Lupus? Fibromyalgia? I even had friends ask has she been tested for Multiple Sclerosis?
Perhaps the next day her abdominal pain would be so bad that I would think, what about Celiacs Disease? Or so kind of stomach intestine problem?
Then after trying to "fix" those a migraine may be next, oh but wait we had an MRI, all of the is clear, maybe it is hormonal with the thyroid off?
Yes of course what about the fatigue, but the endocrinologist said she didn't have Chronic Fatigue Syndrome!
Do you get the picture? Lyme looks like so many different illnesses! After researching and learning what little bit I have learned about Lyme disease, and the fact that it is NOT just a tick disease, I wonder how many people reading this are mis-diagnosis? IF any of those symptoms fit you, please have a Lyme test through Igenex lab in California.
There is one MAJOR difference about all of the illnesses I compared Lyme to above, the other illnesses are bad, awful, but with Lyme if you go mis-diagnosis it can be fatal if left untreated.
P.S. I am NOT affiliated with Igenex lab of California in any way, shape, form or fashion, other than sending a blood test in to save my daughter's life!
The following is a video from Igenex lab in CA, it may start off a little boring to you...but pay clost attention and find out WHY Igenex is the MOST ACCURATE for Lyme testing!
Perhaps the next day her abdominal pain would be so bad that I would think, what about Celiacs Disease? Or so kind of stomach intestine problem?
Then after trying to "fix" those a migraine may be next, oh but wait we had an MRI, all of the is clear, maybe it is hormonal with the thyroid off?
Yes of course what about the fatigue, but the endocrinologist said she didn't have Chronic Fatigue Syndrome!
Do you get the picture? Lyme looks like so many different illnesses! After researching and learning what little bit I have learned about Lyme disease, and the fact that it is NOT just a tick disease, I wonder how many people reading this are mis-diagnosis? IF any of those symptoms fit you, please have a Lyme test through Igenex lab in California.
There is one MAJOR difference about all of the illnesses I compared Lyme to above, the other illnesses are bad, awful, but with Lyme if you go mis-diagnosis it can be fatal if left untreated.
P.S. I am NOT affiliated with Igenex lab of California in any way, shape, form or fashion, other than sending a blood test in to save my daughter's life!
The following is a video from Igenex lab in CA, it may start off a little boring to you...but pay clost attention and find out WHY Igenex is the MOST ACCURATE for Lyme testing!
Okay so I need to find a LLMD, where the heck do ya find that?....
Read more of the story...
Lyme! No It can NOT be Lyme that test was NORMAL!
Remember how I have been praying and others have been praying and asking God to show us what is wrong with Hope? You may be thinking that by now, God would have already healed her, or that answers would have come. There is one thing that I have learned through this process, among many things, God's timing and His ways are not always our ways. We want it NOW and God is patient and teaches us patience, yet he reminds us that he will never leave us nor forsake us.
Just this past month I have seen Hope's health decline, the fatigue is back (sleeping about 16 hours per day), the body aches and the joint pain is high, the first week of April she had a 3.5 day migraine all the way up to the day before Prom and went to prom with a headache, nausea, upper back and shoulder pain, bloating in the abdominal, abdominal pain, cold hands and cold feet, sweaty palms, hot flashes, the list goes on, basically a 40 something year old in a 17 year old body!
I started my research process again, wondering what could be left? I searched the symptoms again, joined private forums of different illnesses, and came across a thyroid condition known as Wilson's Syndrome. Basically it is where you have hypothyroidism and low body temperature because your T4 is not transferring to T3. Could that be it? Well you got to find a doctor that knows about Wilson's Syndrome first! The search led me to a doctor in Birmingham, or at least to do some of the testing that I needed done, in the meantime I am keeping a record of her body temperature which on average is 97.6.
We go the appointment to the doctor in Birmingham that I had made with a General Practitioner because I just needed some extensive thyroid testing done and this one was very familiar with Wilson's Syndrome. While we were at this appointment the young doctor keeps referring to his dad and his dad's practice, then makes the comment, "as an Internist I am very intrigued and would like to study more to diagnosis Hope." I was thinking to myself, What? Internal Medicine? They ran even more blood test for RA, Celiac's Disease, Lyme, and Mal-Absorption. I came home that evening and went to the website and realized I did indeed make the appointment with the dad, but they gave me the son! (dad is a GP and son is an Internal Medicine dr which led to more test)! Call me crazy but God had moved on Hope's behalf!
I decided it was time for yet another plea for FB friends to please continue to pray, a friend messaged me and said I have a couple of friends and their illnesses sound like Hope's, will you friend them on FB, and talk to them, Sure! Within minutes a had a "new" friend. She began telling me how she went from Doctor to doctor, has a thyroid problem, basically mis-diagnosised for years! Then she said, you know "one day you have a headache, the next day you have incredible body aches, the next your stomach hurts, then the next day you think you are a hypochondriac!" I thought that is the way Hope feels, one day it is one thing, then something else, then it moves again!!!!
My "new" friend has Lyme disease. Wait! What? Hope was tested for Lyme disease, the test were Normal! So there is no way that Hope can have Lyme was my thinking. My "new" friend told me to join some more of the Lyme support groups and talk to several other Lyme patients, I quickly learned a lot about Lyme.
When I start reading the post about other Lyme patients and testing through a lab in California, I thought wait, I have heard of that lab. Then I remembered about 6 months ago a high school friend of my husbands had messaged him and told him that it sounded like Lyme and that we needed to have her tested through Igenex. But she has been tested for Lyme!, and the endocrinologist said, "Good news No Lyme", then I remembered back to me calling the office that day about 1 panel being positive!!!!!!! (remember but the nurse said that the CDC stated that 5 bands have to be positive for it to be Lyme, so if Dr ______ says you don't have Lyme then she don't have Lyme)!
God moves on our behalf even when we don't know it......
Read more of the story....
Just this past month I have seen Hope's health decline, the fatigue is back (sleeping about 16 hours per day), the body aches and the joint pain is high, the first week of April she had a 3.5 day migraine all the way up to the day before Prom and went to prom with a headache, nausea, upper back and shoulder pain, bloating in the abdominal, abdominal pain, cold hands and cold feet, sweaty palms, hot flashes, the list goes on, basically a 40 something year old in a 17 year old body!
I started my research process again, wondering what could be left? I searched the symptoms again, joined private forums of different illnesses, and came across a thyroid condition known as Wilson's Syndrome. Basically it is where you have hypothyroidism and low body temperature because your T4 is not transferring to T3. Could that be it? Well you got to find a doctor that knows about Wilson's Syndrome first! The search led me to a doctor in Birmingham, or at least to do some of the testing that I needed done, in the meantime I am keeping a record of her body temperature which on average is 97.6.
We go the appointment to the doctor in Birmingham that I had made with a General Practitioner because I just needed some extensive thyroid testing done and this one was very familiar with Wilson's Syndrome. While we were at this appointment the young doctor keeps referring to his dad and his dad's practice, then makes the comment, "as an Internist I am very intrigued and would like to study more to diagnosis Hope." I was thinking to myself, What? Internal Medicine? They ran even more blood test for RA, Celiac's Disease, Lyme, and Mal-Absorption. I came home that evening and went to the website and realized I did indeed make the appointment with the dad, but they gave me the son! (dad is a GP and son is an Internal Medicine dr which led to more test)! Call me crazy but God had moved on Hope's behalf!
I decided it was time for yet another plea for FB friends to please continue to pray, a friend messaged me and said I have a couple of friends and their illnesses sound like Hope's, will you friend them on FB, and talk to them, Sure! Within minutes a had a "new" friend. She began telling me how she went from Doctor to doctor, has a thyroid problem, basically mis-diagnosised for years! Then she said, you know "one day you have a headache, the next day you have incredible body aches, the next your stomach hurts, then the next day you think you are a hypochondriac!" I thought that is the way Hope feels, one day it is one thing, then something else, then it moves again!!!!
My "new" friend has Lyme disease. Wait! What? Hope was tested for Lyme disease, the test were Normal! So there is no way that Hope can have Lyme was my thinking. My "new" friend told me to join some more of the Lyme support groups and talk to several other Lyme patients, I quickly learned a lot about Lyme.
When I start reading the post about other Lyme patients and testing through a lab in California, I thought wait, I have heard of that lab. Then I remembered about 6 months ago a high school friend of my husbands had messaged him and told him that it sounded like Lyme and that we needed to have her tested through Igenex. But she has been tested for Lyme!, and the endocrinologist said, "Good news No Lyme", then I remembered back to me calling the office that day about 1 panel being positive!!!!!!! (remember but the nurse said that the CDC stated that 5 bands have to be positive for it to be Lyme, so if Dr ______ says you don't have Lyme then she don't have Lyme)!
God moves on our behalf even when we don't know it......
Read more of the story....
Smooth sailing! Medical test are Normal!
Summer was coming to a close and now she was starting her junior year of high school, AP classes with some electives, football games and fun filled weekends. I started to notice a change again in her health, she started slowing down again. I took her back to have her thyroid check, all normal. In Oct 2012 she had strep, of course it kept her down and out of school for about a week, there again nothing that an anti-biotic won't knock out!
Thanksgiving holiday went by and all I could think of is how thankful I was that the doctors had ruled out all of the scary stuff this past year, and that the thyroid might be causing a few minor problems. Woke up on the morning of December 2, 2012 (her dad's birthday) got ready for church, ate breakfast, the usual. We got to church, attended Sunday School and Hope suddenly didn't feel good, nausea and upset stomach. I am thinking oh great now a stomach virus! (just my luck on Ben's b'day there goes the steak dinner tonight). She goes and lays down on a pew in the sanctuary, I saw that she was okay so I go back to Sunday School. I was gone about 20 minutes, other church members had started coming in for the worship service, Hope was sitting up, and she recognized me, but she did not recognize the people around her! In about 10 minutes it was all over and a sudden headache occurred. During the service Hope and I sat outside and just enjoyed the warm Alabama weather although it was December, and after taking Ibuprofen her headache went away. (Hope didn't drive for about a month after this event due to the dizziness.)
The following morning of course as a mom, scared, called and the nurse said if it happens again let us know. Within about 3 weeks Hope and I were checking out of Wal-Mart at the register, then all of the sudden, Hope couldn't form a sentence! Nothing would come out! The words were slurred and scrambled, then in like 5 minutes it was over.
I called the Drs office and made a visit, after researching she was tested for a Mitrel Valve Prolapse, Echo-Cardiogram, EKG all came back normal. Then after research I asked if she could have a table tilt test done for Dysautonomia. Wanna guess what the test come back as?
You got it NORMAL!!!
Happy New Year! All of the above test were normal! Not long after the Christmas break and towards the end of January the fatigue was rising, the body aches were getting worse, the migraines were getting unbearable, cold hands, cold feet, everything falling apart. She pushed through school days, some half days but for the most part full days, she pushed herself and attended two weekend retreats. Then spring break came, and it was almost Prom time! Time to get a prom dress. Fun! As a mom you know something is wrong with your daughter when she can't hardly go shop for a prom dress and the next 3 days she is wiped out and all she is doing spring break is sleeping! I kept praying God, please don't let her miss her junior prom due to health problems. He didn't she went!
Within days after I started seeing that she was not bouncing back and I thought maybe it is time for a third or fourth opinion, whatever # this would be. We went to see another Endocrinologist in Birmingham, basically he stated that we needed to possibly see an ENT, OB-Gyn and a Rhuemetologist if she is really feeling all of the pain because with some people it may be all in their head or IF she is then it could be Fibromyalgia. Oh but let me test her Vitamin D level. Which came back a tad low, but now taking more of that.
Once again another doctor has the same outlook of IF she is really feeling all this pain, well Doc do you really think she would put off getting her Drivers License for 6 months? Do you really think she really enjoys being at home and not going a ton of places due to not feeling good? She is a teenager that loves life, loves to laugh, loves people, AP classes and trying her best to keep her GPA up with her unknown illness! Well Doc with a list of specialist, ENT, OB-Gyn or Rhuemetologist which end to you want me to start??? (don't worry those were just my thoughts that day I did not rant at the Doc!)
With that appointment behind us, it set a fire under this mom again, I did an update status on FB for people to re-commit to pray for Hope. Now this is getting really interesting!!!
Read more of the story....
Thanksgiving holiday went by and all I could think of is how thankful I was that the doctors had ruled out all of the scary stuff this past year, and that the thyroid might be causing a few minor problems. Woke up on the morning of December 2, 2012 (her dad's birthday) got ready for church, ate breakfast, the usual. We got to church, attended Sunday School and Hope suddenly didn't feel good, nausea and upset stomach. I am thinking oh great now a stomach virus! (just my luck on Ben's b'day there goes the steak dinner tonight). She goes and lays down on a pew in the sanctuary, I saw that she was okay so I go back to Sunday School. I was gone about 20 minutes, other church members had started coming in for the worship service, Hope was sitting up, and she recognized me, but she did not recognize the people around her! In about 10 minutes it was all over and a sudden headache occurred. During the service Hope and I sat outside and just enjoyed the warm Alabama weather although it was December, and after taking Ibuprofen her headache went away. (Hope didn't drive for about a month after this event due to the dizziness.)
The following morning of course as a mom, scared, called and the nurse said if it happens again let us know. Within about 3 weeks Hope and I were checking out of Wal-Mart at the register, then all of the sudden, Hope couldn't form a sentence! Nothing would come out! The words were slurred and scrambled, then in like 5 minutes it was over.
I called the Drs office and made a visit, after researching she was tested for a Mitrel Valve Prolapse, Echo-Cardiogram, EKG all came back normal. Then after research I asked if she could have a table tilt test done for Dysautonomia. Wanna guess what the test come back as?
You got it NORMAL!!!
Happy New Year! All of the above test were normal! Not long after the Christmas break and towards the end of January the fatigue was rising, the body aches were getting worse, the migraines were getting unbearable, cold hands, cold feet, everything falling apart. She pushed through school days, some half days but for the most part full days, she pushed herself and attended two weekend retreats. Then spring break came, and it was almost Prom time! Time to get a prom dress. Fun! As a mom you know something is wrong with your daughter when she can't hardly go shop for a prom dress and the next 3 days she is wiped out and all she is doing spring break is sleeping! I kept praying God, please don't let her miss her junior prom due to health problems. He didn't she went!
Within days after I started seeing that she was not bouncing back and I thought maybe it is time for a third or fourth opinion, whatever # this would be. We went to see another Endocrinologist in Birmingham, basically he stated that we needed to possibly see an ENT, OB-Gyn and a Rhuemetologist if she is really feeling all of the pain because with some people it may be all in their head or IF she is then it could be Fibromyalgia. Oh but let me test her Vitamin D level. Which came back a tad low, but now taking more of that.
Once again another doctor has the same outlook of IF she is really feeling all this pain, well Doc do you really think she would put off getting her Drivers License for 6 months? Do you really think she really enjoys being at home and not going a ton of places due to not feeling good? She is a teenager that loves life, loves to laugh, loves people, AP classes and trying her best to keep her GPA up with her unknown illness! Well Doc with a list of specialist, ENT, OB-Gyn or Rhuemetologist which end to you want me to start??? (don't worry those were just my thoughts that day I did not rant at the Doc!)
With that appointment behind us, it set a fire under this mom again, I did an update status on FB for people to re-commit to pray for Hope. Now this is getting really interesting!!!
Read more of the story....
A walk in the park!
The very next morning I am on the phone, asking the receptionist questions, does Dr ____ do a T4Free, T3Free Thyroid test? "Let me let you talk to a nurse". The nurse I spoke to is very kind and generous and patient with me, "Yes Mrs Nichols we can do those test". Then I hung up thinking I already have a stack of papers right in front of me with numerous thyroid test and all of the doctors so far have said...you guessed it, normal! I called back within an hour or so, the receptionist put me back through to that nurse, I started asking questions again about the thyroid, she said, "mam, didn't you say your daughter was 16"? I replied "yes" the nurse, "If you don't mind me asking is her name Hope???" I was shocked and replied, "yes how did you know?" Nurse "Well it sounds like the "Hope" that is on our prayer list at church"! Needless to say I made the appointment!
What I have not told you, not only did I write the FB commit to pray for Hope note, I privately contacted friends, ministers to add Hope to their prayer list at church. Anybody that I knew that would go boldly before the throne of grace for my child's health asking the Father to heal her.
Within a day we showed up for our appointment with a new doctor. I show up with my file of blood test, etc., and of course I am thinking please don't tell me "normal". One of the very first things he said to Hope, "I believe you Hope when you tell me that you are in pain, if I cannot find out what is wrong with you I will try my best to find someone that knows". (that in itself was great medicine just knowing that her doctor believed her!) He ask me, have you had a Lyme test? "Yes the doctor, the endocrinologist said it was normal, No Lyme." He looks through the file, he sees the records I have kept of her diet, vitamins, body temperature, and he is like heck yeah she has a thyroid problem! Whew! Thankfully he found an answer! He did Thyroid blood test that day to check it again, and started her out on the lowest dosage of the meds after seeing all of the medical history I had with me, and wait to see what the results were to tweak it some.
Needless to say, I come home over joyed, Hope has Hypothyroidism and a hormonal imbalance! (with everything else that she had been tested for that is a walk in the park!)
Hope started the thyroid medicine in March 2012, she had a little set back in April 2012 due to a sinus infection but of course nothing that an anti-biotic would not take care of. She started having a little more energy, the body aches were going down, not stopped totally just some relief, headaches were only every couple of weeks, other symptoms were considered mild. Life was looking up! She finally felt good enough to go get her driver's license!
She spent the summer seeing friends, mission projects and mission trip to Atlanta, her health was recovering and I was so thankful and delighted to see my daughter enjoying life again!
Read more of the story...
What I have not told you, not only did I write the FB commit to pray for Hope note, I privately contacted friends, ministers to add Hope to their prayer list at church. Anybody that I knew that would go boldly before the throne of grace for my child's health asking the Father to heal her.
Within a day we showed up for our appointment with a new doctor. I show up with my file of blood test, etc., and of course I am thinking please don't tell me "normal". One of the very first things he said to Hope, "I believe you Hope when you tell me that you are in pain, if I cannot find out what is wrong with you I will try my best to find someone that knows". (that in itself was great medicine just knowing that her doctor believed her!) He ask me, have you had a Lyme test? "Yes the doctor, the endocrinologist said it was normal, No Lyme." He looks through the file, he sees the records I have kept of her diet, vitamins, body temperature, and he is like heck yeah she has a thyroid problem! Whew! Thankfully he found an answer! He did Thyroid blood test that day to check it again, and started her out on the lowest dosage of the meds after seeing all of the medical history I had with me, and wait to see what the results were to tweak it some.
Needless to say, I come home over joyed, Hope has Hypothyroidism and a hormonal imbalance! (with everything else that she had been tested for that is a walk in the park!)
Hope started the thyroid medicine in March 2012, she had a little set back in April 2012 due to a sinus infection but of course nothing that an anti-biotic would not take care of. She started having a little more energy, the body aches were going down, not stopped totally just some relief, headaches were only every couple of weeks, other symptoms were considered mild. Life was looking up! She finally felt good enough to go get her driver's license!
She spent the summer seeing friends, mission projects and mission trip to Atlanta, her health was recovering and I was so thankful and delighted to see my daughter enjoying life again!
Read more of the story...
Blood Test are Normal, No Lyme!
About two months had past and my sweet 16 year old daughter was sick, unable to go to school, fatigue was at it's all time highest, fever would come and go, the body aches and joint pain had gotten worse, cold hands and feet, nausea, dizziness, two occasions of slurred speech and memory loss. As a parent I would walk out of the pediatrics doctors office and each time, "Mrs Nichols, all the medical blood test are normal!"
During this time period there were two things that happened in my own personnel life as a mom. I would cry out to God, to heal my child and I would pray over her and claim scripture. Secondly, Google became my best friend! Yes we all do it, we go to Mayo Clinic's website we do the symptom checker, again and again, we read about every horrible disease, illness known to man and before we get up out of our chair our body aches thinking we are the one that is sick!!
I kept learning more about the thyroid, although her blood test were normal, and not showing a thyroid problem, I kept researching and I am not a medical doctor but I was convinced my daughter had a thyroid problem. But of course because her test were normal, and I am just the parent, the doctor basically told me it was all in her head and there was no way that she felt that pain! Fortunately for the sake of that doctor and his well being that was a visit where my husband was present and he is the meek and mild one......we walked out. (if I was the only parent there that day I am not exactly sure what I would have done to him....just being honest)!
That same evening I posted this note on FB asking people to commit to pray for Hope: Jan 22, 2012
Life is full of challenges. We all have them. At the moment we are faced with a challenge for Hope's health. She has been sick for about two months. The doctors have ruled out some pretty scary stuff. Praise God! One doctor referred to her, as her "mystery patient". As a parent hearing those words, is not comforting. But I know in my heart that God knows exactly what is wrong with her, He is the healer, the Great Physician. If He chooses He can heal her instantly. So far that has not been His plan! (she is still sick). So therefore I come to you, my brothers and sisters in Christ, we are a team, we are an army of believers, we know that God has a plan for Hope, "a plan to prosper her and not to harm her, a plan to give her hope and a future." (Jer. 29:11).
Within just a few minutes of posting the note people started commenting and asking what the symptoms were, I posted those too, although some are personal Hope was to the point of "mom I don't care if my friends read it I just want to get well!" (but remember the doctor said she couldn't really be feeling that much pain)!
That same evening people asked has she been tested for Mono? Yes, test is normal.
Tested for Lyme? Yes, test is normal.
Tested for Lupus? Yes, test is normal.
Tested the Thyroid? Yes, test is normal.
People were so gracious and reached out to our family and as a parent I knew that people cared and were praying for my daughter. Someone that read that note told us about a specialist, an endocrinologist and they can get us an appointment! Praise God!
We called and made the appointment and go back several times. The endo tested Hope for Lyme, Leukemia, Thyroid, Slow Growth due to her stature (short like her momma), Auto-Immune, RA, Jr RA, Mono, Neurotransmitter Imbalance. All test, yep you guessed it Normal! Except for one test that the neurotransmitter imbalance What? As a mom of course you know, come home research, 2nd opinion! (turned out to be a normal test as well on 2nd opinion).
I returned to the above endo's office about a week later to obtain the medical records for my daughter, one thing that popped out at me, the Lyme test! One panel on the Lyme test was positive! WHAT? I immediately called the endo's office back and asked about it, "Mrs Nichols, according to the CDC there has to be 5 panels positive on the test for it to be Lyme and if Dr _______ told you there was NO LYME then there is No Lyme!" Hung up the phone in relief in March 2012.
Still totally overwhelmed by our medical system and still crying out to God for answers. Lord please help us, show us what's wrong with her and heal her body. Some answers started coming! I had a sweet lady message me through FB and let me know that she too thought it was thyroid and that I needed to take Hope to see Dr ______ locally. Well honestly in the back of my mind, a local Dr?, and we have already been to see a specialist!, are you kidding me?
There is always hope......
Read more of the story....
During this time period there were two things that happened in my own personnel life as a mom. I would cry out to God, to heal my child and I would pray over her and claim scripture. Secondly, Google became my best friend! Yes we all do it, we go to Mayo Clinic's website we do the symptom checker, again and again, we read about every horrible disease, illness known to man and before we get up out of our chair our body aches thinking we are the one that is sick!!
I kept learning more about the thyroid, although her blood test were normal, and not showing a thyroid problem, I kept researching and I am not a medical doctor but I was convinced my daughter had a thyroid problem. But of course because her test were normal, and I am just the parent, the doctor basically told me it was all in her head and there was no way that she felt that pain! Fortunately for the sake of that doctor and his well being that was a visit where my husband was present and he is the meek and mild one......we walked out. (if I was the only parent there that day I am not exactly sure what I would have done to him....just being honest)!
That same evening I posted this note on FB asking people to commit to pray for Hope: Jan 22, 2012
Life is full of challenges. We all have them. At the moment we are faced with a challenge for Hope's health. She has been sick for about two months. The doctors have ruled out some pretty scary stuff. Praise God! One doctor referred to her, as her "mystery patient". As a parent hearing those words, is not comforting. But I know in my heart that God knows exactly what is wrong with her, He is the healer, the Great Physician. If He chooses He can heal her instantly. So far that has not been His plan! (she is still sick). So therefore I come to you, my brothers and sisters in Christ, we are a team, we are an army of believers, we know that God has a plan for Hope, "a plan to prosper her and not to harm her, a plan to give her hope and a future." (Jer. 29:11).
One day this past week while I was working our local store, a lady came in, small talk started, I mentioned the fact that my daughter was sick and the doctors did not know what was wrong with her. As I told her about Hope and her love for Christ, model student, blah, blah, blah, like mom's brag on their children kind of talk, this lady said, "sounds like the enemy is trying to destroy her, cause the enemy knows God is using her!"
That statement has stayed with me, more than any of the things that doctors have said. I ask as a mom, as a believer in Christ, each day please pray healing, deliverance, protection from the enemy, wisdom for the doctors, guidance as parents over Hope.
IF you will agree to do this, either "like" this note, "share" this note on your wall, or "comment". This is not a popularity contest, it is not about look at my child she is sick, it is about believers in Christ coming together in one accord and believing God for healing."For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet was without sin. 16Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." (Heb. 15-16) As Hope's mom, I thank each one of you for your commitment to join in prayer for her, God bless you!
Because of Him,
Sydney
That same evening people asked has she been tested for Mono? Yes, test is normal.
Tested for Lyme? Yes, test is normal.
Tested for Lupus? Yes, test is normal.
Tested the Thyroid? Yes, test is normal.
People were so gracious and reached out to our family and as a parent I knew that people cared and were praying for my daughter. Someone that read that note told us about a specialist, an endocrinologist and they can get us an appointment! Praise God!
We called and made the appointment and go back several times. The endo tested Hope for Lyme, Leukemia, Thyroid, Slow Growth due to her stature (short like her momma), Auto-Immune, RA, Jr RA, Mono, Neurotransmitter Imbalance. All test, yep you guessed it Normal! Except for one test that the neurotransmitter imbalance What? As a mom of course you know, come home research, 2nd opinion! (turned out to be a normal test as well on 2nd opinion).
I returned to the above endo's office about a week later to obtain the medical records for my daughter, one thing that popped out at me, the Lyme test! One panel on the Lyme test was positive! WHAT? I immediately called the endo's office back and asked about it, "Mrs Nichols, according to the CDC there has to be 5 panels positive on the test for it to be Lyme and if Dr _______ told you there was NO LYME then there is No Lyme!" Hung up the phone in relief in March 2012.
Still totally overwhelmed by our medical system and still crying out to God for answers. Lord please help us, show us what's wrong with her and heal her body. Some answers started coming! I had a sweet lady message me through FB and let me know that she too thought it was thyroid and that I needed to take Hope to see Dr ______ locally. Well honestly in the back of my mind, a local Dr?, and we have already been to see a specialist!, are you kidding me?
There is always hope......
Read more of the story....
In the beginning a flu-like Zombie!
Where to even begin? This chapter of our journey as a family beings in the fall of 2011. As a mom I can remember my teenage daughter looking forward to her sweet 16th birthday just like every other teenager does, getting your license, dreaming of more clothing, cars, dating and boys! Except the fact that she had these flu like symptoms that really just did not want to go away. For almost 2-3 weeks the symptoms just kept lingering and as a mom I tried everything and kept thinking I have to get her well for her sweet 16 birthday party because on 11/11/11 she turns 16!
Sure enough she got to go and enjoy her own birthday party with family and friends, bonfire, movie under the stars, food all the things teenager like, she still did not feel good but she attended the event. Still attending school but as soon as she came home in the afternoons, a nap was in order! She even felt too tired and sick to get her drivers license! She rested over Thanksgiving break and Christmas break was coming soon, but of course as a high school student final exams were in order. This is the day that is vivid in my memory as a parent with a child with an un-diagnosis illness, the last day of school for Christmas break 2011, she attended school took her final exam and spent the night with a friend. The next day, mid-morning she came home and that was it.....Zombie!
As a parent, at first I thought it was just exhaustion from a full semester of AP classes, teenage wipe out tiredness, and just needed more rest, WRONG! Hope started sleeping 12 hours, then the 12 wasn't enough then 16-18 hours per day and wake up exhausted!!! Needless to say I thought she is probably just sleeping too much and needs some exercise to get her going again. I would go in and check on her, to make sure she is alright, but here is one of the keys to this whole journey I am about to tell you. When I would put my hand on her forehead to check for temperature, she would be normal, no big deal, thermometer reading usually in the 98.0-98.9 range, but her hands were cold as ice! Yes it was December, Yes the heat was on, but she was like ice! Not long after the flu like symptoms started to fade and just an average cold with a runny nose still lingered then came an infection, one that raised attention of the attending pediatric doctor at the time, and needed two anti-biotics and an anti-biotic cream to heal, but after two sonograms the doctor assured me that it was no cancerous, but possibly a staph infection.
December 2011 was when all of the doctors visits started with what many doctors have labeled her as their "mystery patient". Right in the middle of Christmas festivities we had many doctor visits to a local pediatrics numerous blood test, and the two sonograms, with a simple comment, "Mrs Nichols your daughters medical blood test are normal!"
Normal that is a word over the past year and half of our lives that I do not like and have come to realize that in the medical field it is thrown around quite often!!!
Normal? Mild fever, runny nose, body aches, fatigue, headaches.....normal? My thoughts as a parent, Doc I don't know what YOU think is NORMAL but this AIN'T NORMAL!
Read more of the story...
Sure enough she got to go and enjoy her own birthday party with family and friends, bonfire, movie under the stars, food all the things teenager like, she still did not feel good but she attended the event. Still attending school but as soon as she came home in the afternoons, a nap was in order! She even felt too tired and sick to get her drivers license! She rested over Thanksgiving break and Christmas break was coming soon, but of course as a high school student final exams were in order. This is the day that is vivid in my memory as a parent with a child with an un-diagnosis illness, the last day of school for Christmas break 2011, she attended school took her final exam and spent the night with a friend. The next day, mid-morning she came home and that was it.....Zombie!
As a parent, at first I thought it was just exhaustion from a full semester of AP classes, teenage wipe out tiredness, and just needed more rest, WRONG! Hope started sleeping 12 hours, then the 12 wasn't enough then 16-18 hours per day and wake up exhausted!!! Needless to say I thought she is probably just sleeping too much and needs some exercise to get her going again. I would go in and check on her, to make sure she is alright, but here is one of the keys to this whole journey I am about to tell you. When I would put my hand on her forehead to check for temperature, she would be normal, no big deal, thermometer reading usually in the 98.0-98.9 range, but her hands were cold as ice! Yes it was December, Yes the heat was on, but she was like ice! Not long after the flu like symptoms started to fade and just an average cold with a runny nose still lingered then came an infection, one that raised attention of the attending pediatric doctor at the time, and needed two anti-biotics and an anti-biotic cream to heal, but after two sonograms the doctor assured me that it was no cancerous, but possibly a staph infection.
December 2011 was when all of the doctors visits started with what many doctors have labeled her as their "mystery patient". Right in the middle of Christmas festivities we had many doctor visits to a local pediatrics numerous blood test, and the two sonograms, with a simple comment, "Mrs Nichols your daughters medical blood test are normal!"
Normal that is a word over the past year and half of our lives that I do not like and have come to realize that in the medical field it is thrown around quite often!!!
Normal? Mild fever, runny nose, body aches, fatigue, headaches.....normal? My thoughts as a parent, Doc I don't know what YOU think is NORMAL but this AIN'T NORMAL!
Read more of the story...
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