- B
TICKS SUCK! AND SO DOES CHRONIC LYME:
Here are a few quick links in case you aren't familiar with Chronic Lyme Disease...
http://www.ilads.org/lyme/lyme-quickfacts.php
http://www.ilads.org/lyme/lyme-tips.php
http://www.ilads.org/lyme/about-lyme.php
http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/eee9f15bfb66a105852567c700120022?OpenDocument
My wife has had chronic Lyme disease for at least 15 years. She used to be a vibrant, happy person, like in the photo (that was our honeymoon). That person is still inside her somewhere, it's just been beaten down by this.
Our insurance does not cover the cost of any Lyme literate doctors in the area, so we have to pay out of pocket. As a result, we have an overwhelming amount of debt. We had to file for bankruptcy, and can barely afford the rent on our house. Not to mention all the rest of our bills. She always tells me she's sorry, and that it's all her fault. This breaks my heart.
She has been receiving treatment, in the form of IV antibiotics, from a local Lyme specialist for over a year now. There are no signs that she is getting better. Our children, now 11 and 13, and I have watched her health deteriorate rapidly over the last 5 years. In plain words, I'm scared. I'm scared that one day I'll get a call saying that she's gone.
I am trying to raise funds in order to provide her with stem cell therapy, which has been shown to be extremely effective in some Lyme patients. Stem cells are able to repair the neurological damage that is caused by Lyme disease. As stem cells do not eradicate Borrelia (the bacteria that causes Lyme), the treatment Amanda has received up until now has been necessary in treating the disease. However, she is suffering from the systemic damage that was caused by the Borrelia and its co-infections. Stem cell transplant will correct the damage done by the infection, returning her to a higher level of functioning and enabling her to re-enter life. As the FDA has not approved this therapy, we are forced to travel outside the US to obtain it. We are currently looking at a company based out of Southern California with a treatment facility in Mexico.
I have to do this to help her, because the alternative is too awful to consider. Please help me help my wife.
Virgil Teague
- Loving husband and best friend to Amanda
Amanda's Story (That's me!)
I used to be active. I used to be smart. I used to be able to work. I used to be able to do what ever I wanted.
Now I am in bed. Everything hurts like somone beat me with a bat. I can feel each individual bone, muscle and joint. It's the weirdest feeling. I have dreams that someone beat me up or I got hit by a train (I wish I were kidding) because I can feel the pain while I sleep And that's if I can sleep at all at night. Most nights I am up until 2am and sleep until 10am. Somedays I feel like I'm going to sleep my life away. There are days that are just "missing".
I was an avid reader and now it's been over a year since I have been able read a book. Now I have been doing hand-sewing as kind of a therapy; physically and emotionally. I havent been able to work because I can't stand, sit, lift, or have any energy to even roll my butt out of bed. Now I have to plan my day around my pain level. I can never plan anything for the future.
And I am not the only one that has Chronic Lyme in this family.
My amazing husband and our daughter has it too. I found out that I had Chronic Lyme while prego with my daughter. And our son (the oldest of the two kids) has Aspergers.
I was working at Kaiser at the time of my diagnoses. But I had paid out of pocket for the Dr visit in San Fracisco and the lab test. Not cheap either. However, I finally had an answer as to why my body was falling apart. But Kaiser denied my treatment, which in turn denied my unborn daughter treatment. The Dr at Kaiser (who worked in the same department as I) told me I had a false positive. I asked why he thought that and his answer was "it just is". Hmm... Great. Now begins the struggle. His recommendation was to go to Psychiatry because I clearly have mental issues. Gee, thanks. And guess what? The psych dr told me he has gotten a lot of patients from this dr who also had gotten the same diagnoses out of network. Guess what? We can't ALL be crazy. We actually have Lyme!
Every dr since then that I have seen was shocked that I was denied treatmnt for years. Lyme left untreated will break you, mind, body, spiritually and financially. Thankfully we changed insurance, but there are no Lyme Literate MD's that take insurance. Why? Because they want to get paid! Because the CDC hasn't widely studied Lyme, The information that they have is nil. Untill recently, they hadn't made any updates since the early 1980's. Another problem is that Lyme mimics so many other terrible diseases. Parkinson's, MS, ALS, etc. All of us people that had a Fibromyalgia or Chronic Fatigue diagnoses? Probably ALL LYME. An insurance company will accept that didagnoses more than a Lyme diagnoses because there really isn't any treatment other than pain managment. Lyme on the other hand... It. Will. Break. You!
I was no longer able to handle oral antibiotics so last year I started with a PICC line. It worked for the meds, but because of my Latex allergy, my skin was melting off! It had to be covered 24/7. Now I have a port under the skin that is accessed weekly by a home nurse. I have IV meds for 3 days and then have 4 days off. I can shower like a normal person again!
Lyme is prevelant all over the country. Ticks do not know state borders. Please educate yourself because you do not want to go through this. In the links above there are facts that you should be aware of. In one of them there is a symptom list and I have all but 3 of the symptoms. My daughter and husband have about half. but with each day it gets worse. My daughters pediatrician finally started her on antibiotics an year and a half ago. It only took 11 years for her to get treatment. As a parent, it kills you to see your vhild sick with anything! But knowing YOU are the reason she has it as well as yyour husband AND maybe that is what triggerd the Aspergers, it is devestating! And to be the reason why we are always broke, it hurts more than the Lyme pain. I cant find words to explain. The symptoms and the agony and pain is undescribable.
There is so much more to explain, but I am out of energy. I had written a very detailed post about our family. And Of course I screwed it up and lost it. I cried. This happens a lot. I desperately neen help. Our family needs help. Being on one income with one chronic illness can be devestating to a family mental health as well as their finances. And we have 3 with Chronic Lyme and one with Aspergers! We have already filed bankruptcy 2 years ago. We are out of options. The stress of trying to stay afloat will bills paid and still have food money, it is really taking a toll. We all want to not have to worry about if we can afford milk let alone medical treatment. We also don't have a reliable car. Mine is parked, broken and the registration is expired. Good thing I don't drive because I am fatigued. Also, because of all of the meds I take (20+ oral pills for me), my dental issues are off the charts. And remember, multiply it by 3! Medication causes dry mouth which screws up you teeth. I need implants and its never gonna happen at this rate...
Thanks to all of you willing to take the time to read about our crazy family and learning about Chronic Lyme! Remember, most of us don't remember being bit!!! And you don't always have that classic bullseye and if you do have Lyme, you CAN be reinfected.
Thanks Again!
Virgil, Amanda, Ben and Emily
Here are a few quick links in case you aren't familiar with Chronic Lyme Disease...
http://www.ilads.org/lyme/lyme-quickfacts.php
http://www.ilads.org/lyme/lyme-tips.php
http://www.ilads.org/lyme/about-lyme.php
http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/eee9f15bfb66a105852567c700120022?OpenDocument
My wife has had chronic Lyme disease for at least 15 years. She used to be a vibrant, happy person, like in the photo (that was our honeymoon). That person is still inside her somewhere, it's just been beaten down by this.
Our insurance does not cover the cost of any Lyme literate doctors in the area, so we have to pay out of pocket. As a result, we have an overwhelming amount of debt. We had to file for bankruptcy, and can barely afford the rent on our house. Not to mention all the rest of our bills. She always tells me she's sorry, and that it's all her fault. This breaks my heart.
She has been receiving treatment, in the form of IV antibiotics, from a local Lyme specialist for over a year now. There are no signs that she is getting better. Our children, now 11 and 13, and I have watched her health deteriorate rapidly over the last 5 years. In plain words, I'm scared. I'm scared that one day I'll get a call saying that she's gone.
I am trying to raise funds in order to provide her with stem cell therapy, which has been shown to be extremely effective in some Lyme patients. Stem cells are able to repair the neurological damage that is caused by Lyme disease. As stem cells do not eradicate Borrelia (the bacteria that causes Lyme), the treatment Amanda has received up until now has been necessary in treating the disease. However, she is suffering from the systemic damage that was caused by the Borrelia and its co-infections. Stem cell transplant will correct the damage done by the infection, returning her to a higher level of functioning and enabling her to re-enter life. As the FDA has not approved this therapy, we are forced to travel outside the US to obtain it. We are currently looking at a company based out of Southern California with a treatment facility in Mexico.
I have to do this to help her, because the alternative is too awful to consider. Please help me help my wife.
Virgil Teague
- Loving husband and best friend to Amanda
Amanda's Story (That's me!)
I used to be active. I used to be smart. I used to be able to work. I used to be able to do what ever I wanted.
Now I am in bed. Everything hurts like somone beat me with a bat. I can feel each individual bone, muscle and joint. It's the weirdest feeling. I have dreams that someone beat me up or I got hit by a train (I wish I were kidding) because I can feel the pain while I sleep And that's if I can sleep at all at night. Most nights I am up until 2am and sleep until 10am. Somedays I feel like I'm going to sleep my life away. There are days that are just "missing".
I was an avid reader and now it's been over a year since I have been able read a book. Now I have been doing hand-sewing as kind of a therapy; physically and emotionally. I havent been able to work because I can't stand, sit, lift, or have any energy to even roll my butt out of bed. Now I have to plan my day around my pain level. I can never plan anything for the future.
And I am not the only one that has Chronic Lyme in this family.
My amazing husband and our daughter has it too. I found out that I had Chronic Lyme while prego with my daughter. And our son (the oldest of the two kids) has Aspergers.
I was working at Kaiser at the time of my diagnoses. But I had paid out of pocket for the Dr visit in San Fracisco and the lab test. Not cheap either. However, I finally had an answer as to why my body was falling apart. But Kaiser denied my treatment, which in turn denied my unborn daughter treatment. The Dr at Kaiser (who worked in the same department as I) told me I had a false positive. I asked why he thought that and his answer was "it just is". Hmm... Great. Now begins the struggle. His recommendation was to go to Psychiatry because I clearly have mental issues. Gee, thanks. And guess what? The psych dr told me he has gotten a lot of patients from this dr who also had gotten the same diagnoses out of network. Guess what? We can't ALL be crazy. We actually have Lyme!
Every dr since then that I have seen was shocked that I was denied treatmnt for years. Lyme left untreated will break you, mind, body, spiritually and financially. Thankfully we changed insurance, but there are no Lyme Literate MD's that take insurance. Why? Because they want to get paid! Because the CDC hasn't widely studied Lyme, The information that they have is nil. Untill recently, they hadn't made any updates since the early 1980's. Another problem is that Lyme mimics so many other terrible diseases. Parkinson's, MS, ALS, etc. All of us people that had a Fibromyalgia or Chronic Fatigue diagnoses? Probably ALL LYME. An insurance company will accept that didagnoses more than a Lyme diagnoses because there really isn't any treatment other than pain managment. Lyme on the other hand... It. Will. Break. You!
I was no longer able to handle oral antibiotics so last year I started with a PICC line. It worked for the meds, but because of my Latex allergy, my skin was melting off! It had to be covered 24/7. Now I have a port under the skin that is accessed weekly by a home nurse. I have IV meds for 3 days and then have 4 days off. I can shower like a normal person again!
Lyme is prevelant all over the country. Ticks do not know state borders. Please educate yourself because you do not want to go through this. In the links above there are facts that you should be aware of. In one of them there is a symptom list and I have all but 3 of the symptoms. My daughter and husband have about half. but with each day it gets worse. My daughters pediatrician finally started her on antibiotics an year and a half ago. It only took 11 years for her to get treatment. As a parent, it kills you to see your vhild sick with anything! But knowing YOU are the reason she has it as well as yyour husband AND maybe that is what triggerd the Aspergers, it is devestating! And to be the reason why we are always broke, it hurts more than the Lyme pain. I cant find words to explain. The symptoms and the agony and pain is undescribable.
There is so much more to explain, but I am out of energy. I had written a very detailed post about our family. And Of course I screwed it up and lost it. I cried. This happens a lot. I desperately neen help. Our family needs help. Being on one income with one chronic illness can be devestating to a family mental health as well as their finances. And we have 3 with Chronic Lyme and one with Aspergers! We have already filed bankruptcy 2 years ago. We are out of options. The stress of trying to stay afloat will bills paid and still have food money, it is really taking a toll. We all want to not have to worry about if we can afford milk let alone medical treatment. We also don't have a reliable car. Mine is parked, broken and the registration is expired. Good thing I don't drive because I am fatigued. Also, because of all of the meds I take (20+ oral pills for me), my dental issues are off the charts. And remember, multiply it by 3! Medication causes dry mouth which screws up you teeth. I need implants and its never gonna happen at this rate...
Thanks to all of you willing to take the time to read about our crazy family and learning about Chronic Lyme! Remember, most of us don't remember being bit!!! And you don't always have that classic bullseye and if you do have Lyme, you CAN be reinfected.
Thanks Again!
Virgil, Amanda, Ben and Emily