Saturday, October 30, 2010
Forget me NOT....
Well, we have made a new turn in things...I had been wondering if Rachel was remembering to take her medication. She has been so very spacey. She has forgotten so many basics. Well, I proved it...and that was why she was feeling better! So we now have a pill holder...she started taking her meds again yesterday....and we can sure tell this! She is back to sleeping, feeling bad and throwing up. This to shall pass...at least that is what I keep telling myself. We are killing the bad guys...the evidence is in how she feels when she takes the antibiotics. So we fight the good fight with courage..at least we try. Blessing to all who pray for us!
Wednesday, October 27, 2010
We have had several good days in a row!
I am so very thankful for the past few days! Rachel had been feeling much better. It was like going off roading in the Rocky Mountains...very rough terrain before teasel...and now it is like a paved road w/ an occasional pot hole and the occasional rough spot...but nothing that we have not been able to get around! For this I am very thankful. She is still have her memory glitches..and some random pain..mostly in her lower back. But like I said we are managing! Thank you for your prayers!
Saturday, October 23, 2010
Praise our Heavenly Father!
It was a good day! Rachel was all there...this is very good. She had one bout with a stomach issue and threw up...but we won't count that. I am just praising YHVH (God) that today was good! I am very glad for good!
Thursday, October 21, 2010
Oct. 21st, 2010 Up is down and Down is up
Hello,
Today has been a good day yet it has had it's challenges. Rachel has now been on Flagle for 4 days now. She has had stomach issues again but not as bad as before..thank you teasel! The big thing is her brain. She is lost most of the time. She does not remember so many little things. She has forgotten how to tie. It is like it is just too complicated for her! I am trying to praise YHVH (God) through this because I know this is a symptom of the die off of the bad bacteria! Praise Him for the die off!
Thank you for reading my posts!
Blessings,
Cathy
Today has been a good day yet it has had it's challenges. Rachel has now been on Flagle for 4 days now. She has had stomach issues again but not as bad as before..thank you teasel! The big thing is her brain. She is lost most of the time. She does not remember so many little things. She has forgotten how to tie. It is like it is just too complicated for her! I am trying to praise YHVH (God) through this because I know this is a symptom of the die off of the bad bacteria! Praise Him for the die off!
Thank you for reading my posts!
Blessings,
Cathy
Wednesday, October 20, 2010
What to do next...
So we have a diagnosis and Rachel is on antibiotics but only for a very limited time. All the lyme groups and the movie "Under Our Skin" showed people on antibiotics for years. People die from this. This is my daughter. I know others are sick in my family but if I get them tested the chances are that it will come back negative. I really don't like antibiotics. I teach a class called Healthy Living Support. (I teach on getting the gut back in order after you have had the pharmaceuticals..and eating raw) Is there anything out there that is natural? There were a hundred and one different things floating through my mind. I was stressed and feeling the pressure to somehow in a short time find the cure for lyme so that my family may live! By this time, as I study, I am convinced that many if not all in our family of 9 have lyme. So now I need to beat the clock. This was all the beginning of my lymeland experience. Hi, welcome to lymeland. It is the place where there seems to be no answers and everything is crazy and upside down and inside out!
Thankfully, the voice of reason came into the picture. My friend who also has the daughter who has lyme had found a Lyme Litterate Medical Doctor (LLMD) in Nashville area. I called. They take my insurance. We go. He treats aggressively. I really like him...and that says a lot! He does natural as well as antibiotics. He puts her on 4 antibiotics. Three she takes for three weeks. Zithromax, Amox., and Rifampin. Then she stops these for 3 weeks and starts Flagil for 3 weeks. Then back on the first 3...and on it goes. At least we had a plan.
I knew from reading that things could get worse before they got better but nothing, I mean nothing that I read or watched could have prepared me for what was happening to my daughter. It was not an over night thing. It was gradual. One moment her head would hurt really bad. The next her big toes. The pains would move around. Sleep started getting weird. She would often be up at 3 am. She was exhausted. She was tired before..but nothing like this. She was taking many naps all through out the day. We finished the 3 weeks. We survived the first chapter.
Then it was Flagil's turn to reek havoc in my child. It did not take long. She took her first dose at night. By the next morning she was throwing up. ~time for a side note here...when the lyme bacteria is dieing off it causes what is called a Herx reaction..the lyme patient will actually feel worse as the little buggars are dieing off!~ The throwing up went on for 3 days...but then something new started to happen. Rachel started forgetting everything! She could not remember that she had watched a movie. Reading became impossible and so was math. Cooking, something she loved, was just too complicated. Seeing her throw up and not feel well was hard..but seeing her loose her sharp mind that was terrible! I made a call to the Doctor. He took her off of all meds. Said at this time she is too sick for them. Keep her off for one week and give her body a break. Then start her back on just Amox. So we did, thinking that would really help her but it didn't. She just continued to throw up and her mind just kept slipping.
Finally on a Sat. morning after she had thrown up for an hour and a half continually, I call the Doc again. I was thinking we were headed to the ER. He figured now the bacteria were just growing and running like crazy in her body. But she was still too sick to take anything thought. The next week was hell. She cried. I cried. I could not fix my baby! On the following Sat. a friend sent me Teasel tincture. (Thank you Colleen! You were a life saver!!) She started w/ one drop. That was at 11am. By 3 I could see a difference in her...but I was afraid to say anything. We had just been through the roughest 3 weeks of our lives! By 5pm she was glowing. Smiling. Not hurting and not throwing up. She still was having brain issues but it was so good to see her smile!
Teasel is being touted as a great herb for lyme. But as with most things lyme what works for one will not work for another. It is however relatively inexpensive so it is a great place to start! My study shows that it really helps w/ pain and symptoms but it does not kill the bacteria. She still needs something to kill the bacterial.
On Monday, Oct. 17 she said she wanted to go back on the antibiotics. She needed to kill those guys in her body. So that evening we started her on a 1/2 dose of the flagil. We will work up to the real dose. By the next day her tummy hurt but not like before. She also started w/ random pains. Today her brain was not here. Hannah had moved to her own place last week. This was a HUGE event in our house. And very big to Rachel because she was getting her sisters room. Today she could not remember why Hannah was not there. She could not remember that yesterday she tore out the carpet in Hannah's room. Today, my Rachel was lost in lyme land.
I am very much trying to praise my Heavenly Father through this. Today especially. Knowing that her lack of memory is evidence that we are killing those bad lyme bacteria! Oh, Lord, get us through this hard time!
Thankfully, the voice of reason came into the picture. My friend who also has the daughter who has lyme had found a Lyme Litterate Medical Doctor (LLMD) in Nashville area. I called. They take my insurance. We go. He treats aggressively. I really like him...and that says a lot! He does natural as well as antibiotics. He puts her on 4 antibiotics. Three she takes for three weeks. Zithromax, Amox., and Rifampin. Then she stops these for 3 weeks and starts Flagil for 3 weeks. Then back on the first 3...and on it goes. At least we had a plan.
I knew from reading that things could get worse before they got better but nothing, I mean nothing that I read or watched could have prepared me for what was happening to my daughter. It was not an over night thing. It was gradual. One moment her head would hurt really bad. The next her big toes. The pains would move around. Sleep started getting weird. She would often be up at 3 am. She was exhausted. She was tired before..but nothing like this. She was taking many naps all through out the day. We finished the 3 weeks. We survived the first chapter.
Then it was Flagil's turn to reek havoc in my child. It did not take long. She took her first dose at night. By the next morning she was throwing up. ~time for a side note here...when the lyme bacteria is dieing off it causes what is called a Herx reaction..the lyme patient will actually feel worse as the little buggars are dieing off!~ The throwing up went on for 3 days...but then something new started to happen. Rachel started forgetting everything! She could not remember that she had watched a movie. Reading became impossible and so was math. Cooking, something she loved, was just too complicated. Seeing her throw up and not feel well was hard..but seeing her loose her sharp mind that was terrible! I made a call to the Doctor. He took her off of all meds. Said at this time she is too sick for them. Keep her off for one week and give her body a break. Then start her back on just Amox. So we did, thinking that would really help her but it didn't. She just continued to throw up and her mind just kept slipping.
Finally on a Sat. morning after she had thrown up for an hour and a half continually, I call the Doc again. I was thinking we were headed to the ER. He figured now the bacteria were just growing and running like crazy in her body. But she was still too sick to take anything thought. The next week was hell. She cried. I cried. I could not fix my baby! On the following Sat. a friend sent me Teasel tincture. (Thank you Colleen! You were a life saver!!) She started w/ one drop. That was at 11am. By 3 I could see a difference in her...but I was afraid to say anything. We had just been through the roughest 3 weeks of our lives! By 5pm she was glowing. Smiling. Not hurting and not throwing up. She still was having brain issues but it was so good to see her smile!
Teasel is being touted as a great herb for lyme. But as with most things lyme what works for one will not work for another. It is however relatively inexpensive so it is a great place to start! My study shows that it really helps w/ pain and symptoms but it does not kill the bacteria. She still needs something to kill the bacterial.
On Monday, Oct. 17 she said she wanted to go back on the antibiotics. She needed to kill those guys in her body. So that evening we started her on a 1/2 dose of the flagil. We will work up to the real dose. By the next day her tummy hurt but not like before. She also started w/ random pains. Today her brain was not here. Hannah had moved to her own place last week. This was a HUGE event in our house. And very big to Rachel because she was getting her sisters room. Today she could not remember why Hannah was not there. She could not remember that yesterday she tore out the carpet in Hannah's room. Today, my Rachel was lost in lyme land.
I am very much trying to praise my Heavenly Father through this. Today especially. Knowing that her lack of memory is evidence that we are killing those bad lyme bacteria! Oh, Lord, get us through this hard time!
Our journey here....
We believe our journey into lymeland started way back in 2002. We moved from a very small town in Nebraska where there were tics but not in abundance to a small town in West Tennessee where tics were everywhere! There is a small chance that my family was exposed in either Nebraska or Colorado but that answer only our Heavenly Father knows. We do know that the spring and summer of 2003 tics were in abundance and a daily part of our life. We did not worry about this little creature. We just figured this was a new part of our life in the South. Tics..everyday on one or more of us.
Let me back up a bit and share who we are. We are a conservative, redeemed, home school family of at that time 6 children...1 son and 5 daughters. (we now have a total of 7 children) We were home which was on a small piece of land that was nothing but forest all the time. My rugged, outdoor family spent lots of time tending to our dairy goat herd and exploring our new surroundings. Tics were an everyday occurrence. We would just pull them off and go on.
In July of that year my oldest daughter, Samantha, became gravely ill. She had all the symptoms of spinal meningitis. She had a lumbar puncture only to determine it was not bacterial meningitis. They ruled it viral meningitis. She was in the hospital for 3 days. We went home only to find our next oldest daughter, Hannah, had the same symptoms. So off to the hospital we went. Because she had the same symptoms as her older sister they did not do the lumbar puncture. She was ruled viral meningitis. Although they swore to me that it was not contagious. This was just a fluke! Three days later we went home only to find yet another daughter, Rachel, sick with the same thing. Off we went to the hospital. They were confused but not so much as to make them look for why 3 girls from the same family all caught some viral thing that settled in their brain! Back then we did not have high speed Internet and the computer was not as big in our lives as it is now. We had no reason not to trust the doctors. We never, that I can remember, have a bulls eye rash or any other lyme symptoms at that time that I was aware of. We were unaware that meningitis is just as big of a symptom as the rash. Shortly after that whole meningitis thing though my oldest daughter, Samantha, started to have pains in her body and head aches. We just treated her with Tylenol. I was not big into doing the dr. thing. She did, though, see a Chiropractor and our family physician who thought it was just a hormonal thing.
Soon after this we moved to Middle Tennessee. And soon after that move my next daughter, Hannah, also started having back problems and pain. Then Rachel....the last one to get the meningitis. All the girls, with the onset of their monthly cycle seemed to get pain throughout their whole body all the time. Sometimes unbearable. It wasnt' until about 3-4 years ago when we had moved to Eastern Tennessee that lyme was on my radar.
My second oldest daughter, Hannah, was tired all the time, cold and in pain. You could not even touch her skin with out major pain. She also had a bout with another spinal meningitis thing. She had all the symptoms but did not test positive. And her labs were "normal" so they accused her of having mental stress! That was a horrible ER experience! Soon after that I had taken her to a family dr who agreed to have her tested for lyme. I believe it was the ELISA. She was negative. Which I now know is not unusual but at the time I figured it was not lyme and that it had to be something else. Hannah, now had all the symptoms of fibromyalgia at age 14! We just kept on living. She is now 18 and still living with pain.
Now we are really getting to where we were aware of being in lymeland! Now we are in June of this year. Rachel, now 13 is having pain all over her body, head aches that are so bad she has to be in her dark room for hours, and she is exhausted most of the time....sleeping and taking naps all the time! A dear friend has a 14 year old daughter who is also sick with lyme. She shares the documentary "Under Our Skin". I am amazed at what I see. Summer is coming on strong...it is hot and August in Tennessee. Rachel comes down with stomach flu. It is a Thursday morning. By that afternoon she has all the symptoms of spinal meningitis...again! We take her to our local ER. She is in so much pain. Rachel has a very high pain tolerance so when she says she hurts you know it! She needed 8 shots of morphine just to keep her bearable! They transported her by ambulance to Children's hospital. They did a spinal only to determine that she did not have viral meningitis. (does it seem like we have been here and done that?!) They decided at 3 am to send my daughter home w/out so much as a pain pill. She needed more morphine just to leave the hospital. Nobody had a check in their brains that this was not a good thing. I was too tired and numb to think. Friday she was no better but because this was just supposed to be a virus, we are riding this out! Saturday she is still no better. So off to our local ER again. This time they admit her. By now I am asking her to be checked for tic born illnesses. The dr. looked at me and said, "we are not looking for zebras here." What the heck?! I am tired but come on here. He then looks at my hubby ( who must be the sane one because he did not ask about tic illnesses!) and stated "in Texas we have an old saying...if you hear hoof beats you think horses not zebras...Your daughter obviously has a virus we will exhaust all else before we look at lyme." My jaw was on the ground. I could not talk. The next day Rachel is still in the hospital. She is puking like crazy and still in a HUGE amount of pain in her head and spine. This "dr." now takes her off of all IV and pain meds and orders her to eat real food! I told the nurse if all we are doing is watching her throw up I can do this at home. Could we contact the "dr." and get us out of here? So away we went, back home!
The next day she is still extremely sick. As a last ditch effort I go to our Nurse Practitioner who I really like. She is a kindly grandmotherly figure who cares for her patients. She comes in and sees how sick Rachel is. Rachel is laying on their hard table throwing up into their trash can. I explain what has happened. I cry. I beg for her to please, please test her for lyme. She agreed. I asked for them not to do the ELISA but to do a Western Blot. She could not do it. She had to follow protocol. 3 days later she calls...Rach is VERY positive on the ELISA test. She starts her on Amoxicillian for 2 weeks w/ a follow up with maybe 2 more weeks. This was the day I new we were in a strange new land...a land that does not make any logical sense....lymeland!
Let me back up a bit and share who we are. We are a conservative, redeemed, home school family of at that time 6 children...1 son and 5 daughters. (we now have a total of 7 children) We were home which was on a small piece of land that was nothing but forest all the time. My rugged, outdoor family spent lots of time tending to our dairy goat herd and exploring our new surroundings. Tics were an everyday occurrence. We would just pull them off and go on.
In July of that year my oldest daughter, Samantha, became gravely ill. She had all the symptoms of spinal meningitis. She had a lumbar puncture only to determine it was not bacterial meningitis. They ruled it viral meningitis. She was in the hospital for 3 days. We went home only to find our next oldest daughter, Hannah, had the same symptoms. So off to the hospital we went. Because she had the same symptoms as her older sister they did not do the lumbar puncture. She was ruled viral meningitis. Although they swore to me that it was not contagious. This was just a fluke! Three days later we went home only to find yet another daughter, Rachel, sick with the same thing. Off we went to the hospital. They were confused but not so much as to make them look for why 3 girls from the same family all caught some viral thing that settled in their brain! Back then we did not have high speed Internet and the computer was not as big in our lives as it is now. We had no reason not to trust the doctors. We never, that I can remember, have a bulls eye rash or any other lyme symptoms at that time that I was aware of. We were unaware that meningitis is just as big of a symptom as the rash. Shortly after that whole meningitis thing though my oldest daughter, Samantha, started to have pains in her body and head aches. We just treated her with Tylenol. I was not big into doing the dr. thing. She did, though, see a Chiropractor and our family physician who thought it was just a hormonal thing.
Soon after this we moved to Middle Tennessee. And soon after that move my next daughter, Hannah, also started having back problems and pain. Then Rachel....the last one to get the meningitis. All the girls, with the onset of their monthly cycle seemed to get pain throughout their whole body all the time. Sometimes unbearable. It wasnt' until about 3-4 years ago when we had moved to Eastern Tennessee that lyme was on my radar.
My second oldest daughter, Hannah, was tired all the time, cold and in pain. You could not even touch her skin with out major pain. She also had a bout with another spinal meningitis thing. She had all the symptoms but did not test positive. And her labs were "normal" so they accused her of having mental stress! That was a horrible ER experience! Soon after that I had taken her to a family dr who agreed to have her tested for lyme. I believe it was the ELISA. She was negative. Which I now know is not unusual but at the time I figured it was not lyme and that it had to be something else. Hannah, now had all the symptoms of fibromyalgia at age 14! We just kept on living. She is now 18 and still living with pain.
Now we are really getting to where we were aware of being in lymeland! Now we are in June of this year. Rachel, now 13 is having pain all over her body, head aches that are so bad she has to be in her dark room for hours, and she is exhausted most of the time....sleeping and taking naps all the time! A dear friend has a 14 year old daughter who is also sick with lyme. She shares the documentary "Under Our Skin". I am amazed at what I see. Summer is coming on strong...it is hot and August in Tennessee. Rachel comes down with stomach flu. It is a Thursday morning. By that afternoon she has all the symptoms of spinal meningitis...again! We take her to our local ER. She is in so much pain. Rachel has a very high pain tolerance so when she says she hurts you know it! She needed 8 shots of morphine just to keep her bearable! They transported her by ambulance to Children's hospital. They did a spinal only to determine that she did not have viral meningitis. (does it seem like we have been here and done that?!) They decided at 3 am to send my daughter home w/out so much as a pain pill. She needed more morphine just to leave the hospital. Nobody had a check in their brains that this was not a good thing. I was too tired and numb to think. Friday she was no better but because this was just supposed to be a virus, we are riding this out! Saturday she is still no better. So off to our local ER again. This time they admit her. By now I am asking her to be checked for tic born illnesses. The dr. looked at me and said, "we are not looking for zebras here." What the heck?! I am tired but come on here. He then looks at my hubby ( who must be the sane one because he did not ask about tic illnesses!) and stated "in Texas we have an old saying...if you hear hoof beats you think horses not zebras...Your daughter obviously has a virus we will exhaust all else before we look at lyme." My jaw was on the ground. I could not talk. The next day Rachel is still in the hospital. She is puking like crazy and still in a HUGE amount of pain in her head and spine. This "dr." now takes her off of all IV and pain meds and orders her to eat real food! I told the nurse if all we are doing is watching her throw up I can do this at home. Could we contact the "dr." and get us out of here? So away we went, back home!
The next day she is still extremely sick. As a last ditch effort I go to our Nurse Practitioner who I really like. She is a kindly grandmotherly figure who cares for her patients. She comes in and sees how sick Rachel is. Rachel is laying on their hard table throwing up into their trash can. I explain what has happened. I cry. I beg for her to please, please test her for lyme. She agreed. I asked for them not to do the ELISA but to do a Western Blot. She could not do it. She had to follow protocol. 3 days later she calls...Rach is VERY positive on the ELISA test. She starts her on Amoxicillian for 2 weeks w/ a follow up with maybe 2 more weeks. This was the day I new we were in a strange new land...a land that does not make any logical sense....lymeland!
Hi! Welcome to my world..lymeland
Hello,
Welcome to my world. It is a world that is much like that of Alice in Wonderland. It is filled with excitement. It is filled with color. It is filled with excitement. There is a new twist everyday! It is filled with pain and tears. It is filled with hope. What is it I am talking about? Lymeland. What might you ask is this? My daughter was diagnosed with lyme disease in the middle of August 2010. We truly entered lymeland long before the diagnosis. Our story is how we arrived here and how our life is going here in this strange land and our road to recovery. I hope to post many times detailing life in this land that is so foreign to us so that even if you are not part of our land you may know what is like here too!
Welcome to my world. It is a world that is much like that of Alice in Wonderland. It is filled with excitement. It is filled with color. It is filled with excitement. There is a new twist everyday! It is filled with pain and tears. It is filled with hope. What is it I am talking about? Lymeland. What might you ask is this? My daughter was diagnosed with lyme disease in the middle of August 2010. We truly entered lymeland long before the diagnosis. Our story is how we arrived here and how our life is going here in this strange land and our road to recovery. I hope to post many times detailing life in this land that is so foreign to us so that even if you are not part of our land you may know what is like here too!
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