Physicians being under fire is not new in the Lyme literate world. I discovered this even before my diagnosis. When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel. Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson. The documentary has several cases where Lyme Literate doctors were under fire during the time of filming. This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.
Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts. Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself. We face chronic skepticism. As a patient, I am often questioned or criticized by the choices I make in regards to my treatments. Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease. People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this: How come every time I mention that I have Lyme Disease to someone they know someone who "was very sick" or "almost died" from it if Lyme Disease is so rare?
It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community. If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation? The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed. However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease. Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)
If this chronic disease doesn't exist, then why is it listed that those with
Chronic Lyme Disease can not donate blood or bone marrow? It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission. It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual.
There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare. They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics. The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source). Did you realize that one tick bite can give more than one illness? A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases. ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases. The two sides constantly butt heads. One group benefits patients and the other group benefits insurance companies.
The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease. The media just exposes the theories taught to them by IDSA trained physicians. These are Lyme Disease myths, so to speak. Generally, the public is told that Lyme is tough to get, but easy to treat. They are told that a tick must be attached for several days in order for transmission to occur. They also suggest that each patient with Lyme Disease will get a bulls eye rash. The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.
The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat. The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses. However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information. They don't inform on other tick borne illnesses. They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors. They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts.
The IDSA presents the community with guidelines for different diseases (IDSA Source). The Center for Disease Control (CDC) follows the IDSA guidelines. Insurance companies follow what the CDC thinks. Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community. Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease. It was all over the news here in North Carolina. Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients. Unfortunately for his patients, our medical board agreed. He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments. He moved his medical practice to South Carolina and after a short while he was asked to leave. He currently practices in Washington DC.
The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease. His joy comes from making children better. Yet, Dr. Jones had to fight for his right to treat. Many physicians continue to fight for their right to treat. Some of those had to give up practicing altogether which left their patients in dyer straights. Currently, there is a new physician fighting for his right to treat. This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme. Dr. Jaller needs our support. There was a petition going around on the internet, but it closed suddenly and no one else can sign it. I must have signed it just in the nick of time. After "signing," we could leave a note for those that read the petition. My words were this:
"Physicians such as Dr. Jaller
are needed in order to treat Chronic Lyme Disease and other tick borne
illnesses. Too few practitioners are capable of properly diagnosing
these tick borne illnesses. I was personally misdiagnosed for 12 years
before being properly diagnosed in 2007 by a physician trained by ILADS.
Dr. Jaller and Physicians like him should be commended, not
condemned."
Friends, I urge you to support your Lyme Literate Physicians. I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important. I also urge you to support each other. We are all under fire all the time. Skeptics are always out there. Share this blog link with your friends.** We should speak together now and I encourage us to speak louder than ever. Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs. We need each other because there is strength in numbers.
"but those who hope in the LORD will renew their strength. They will soar
on wings like eagles; they will run and not grow weary, they will walk
and not be faint." Isaiah 40:31
*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.
** When you share this link on your blog, let me know via comment so I can visit yours. :o}
*** This was posted on Lyme Aware:
Showing posts with label Lyme Disease. Show all posts
Showing posts with label Lyme Disease. Show all posts
Friday, September 14, 2012
Saturday, May 12, 2012
Friday, May 11, 2012
Day 11 LDA Month
http://www.youtube.com/watch?v=BkBhPSMNPzE&feature=relmfu
This is the 2nd part of Michelle On Lyme. Thank you for watching these videos.
Remember to go further down to read my blog on Discrimination and Prejudice.
This is the 2nd part of Michelle On Lyme. Thank you for watching these videos.
Remember to go further down to read my blog on Discrimination and Prejudice.
Thursday, May 10, 2012
May 10, 2012
There are days where I hate to write something new because I don't want my previous post to be pushed down. So I'm keeping this short. Please read my post on discrimination and prejudice under this one.
Day 10 of Lyme Disease Awareness Month:
Michelle -- a Lyme patient did a two part video a while ago. Here is part one. It's been a while since I've watched these two videos, but I remember I enjoyed them. I hope you do too.
Day 10 of Lyme Disease Awareness Month:
Michelle -- a Lyme patient did a two part video a while ago. Here is part one. It's been a while since I've watched these two videos, but I remember I enjoyed them. I hope you do too.
Monday, May 7, 2012
Day 7 of Lyme Disease Awareness Month
Personal Story on friendship and Lyme and then onto the video:
Yesterday I spent the day with one of my closest friends and his family on his birthday. Lyme has taught me a number of things. I can roll of information about Lyme Disease and Ticks in a moment's notice. I don't have to think about it anymore. It is just ingrained. There is one small thing that Lyme taught me. If I could take Lyme away and never have had it in the first place, if that meant not learning this one thing ... I wouldn't do it. I wouldn't give it back. I would take this journey all over again as long as I learned this one thing.
Lyme Disease is very tough on friendships. I've lost some friends along the journey of Lyme. It is just what it is. However, you know how you have friends that you don't realize how special they are until they do something to step it up? Something unthinkable. Well this post is about how a friendship like that came to be. We were merely acquaintances in middle and high school until he stepped it up when I needed it. It had nothing to do with Lyme Disease or health issues. I didn't even know I needed it, but he stepped it up. Ever since, we were tight friends. When we both went to college, we emailed a lot. He became my sounding board. When I was going through unbelievable trials and tribulations, he listened. I didn't want suggestions. I just wanted someone to listen. And listen he did.
When I finally got diagnosed with Lyme, he was one of the first friends I told. He rejoiced with me in the fact that the unknown was finally known. He shared my sorrow in the fact that the journey would be a long one. I shared my concern that I would lose all of my friends and he made me a promise that our friendship would remain strong and intact no matter what I experienced. I am blessed by the way with some of the best friends ever --- Lyme has made those bonds stronger.
When I was undergoing the most experimental and controversial of treatments, he didn't criticize my choices. He didn't question the doctor's choices. He just listened and when I had run out of ride home options --- he offered to pick me up after a treatment. After those treatments, it wasn't pretty. I did not like people to see me like that. It was difficult to walk. It was difficult to talk. The muscles in my mouth didn't work properly after a treatment and it was difficult to swallow my own saliva. And each treatment was slightly different in end results, but I needed rides to the treatment and home from the treatment.
I did not want a "friend" to see me "like that." My husband was my main "escort." He carried me to the treatment always and most of the time he picked me up to carry me home. However, we needed help. So I called on my immediate family. One week, they couldn't help and I thought I was going to have to stay at the doctor's office until night. I was "woah is me-ing" to this friend and he said, "I can pick you up if you need." I was shocked and had to decide if seeing me like that was something he could handle and allowing a friend to see me like that was something I could handle.
I confided in him the things he might possibly see and asked if he could handle it. I trusted him when he said he could handle it. Leave it to me to have the worst reaction ever on the day he had to pick me up. He literally had to carry me to his car, carry me into my home and as I stumbled to try to make it on my own, he picked me up and put me in my own bed. I don't remember much from this day, but I remember thinking how very blessed I was to have a friend that would be willing to literally pick me up from treatment. I was terrified that I would never see him again after he saw me limply laying there looking like that with a mouth full of saliva rolling down my cheek, hitting my chin and drenching my shirt, but that moment brought us closer together as friends.
Like I said, if it meant that I wouldn't learn this one simple thing, I would not take this journey back. I would do it all over again.
Now onto the Advocacy part of my blog post.
Advocating Lyme One Blog Post at a Time.
We are one week into Lyme Disease Awareness Month. This is the 7th post about Lyme Disease in the month. I found a video created by a woman that includes 7 Lyme facts that could have improved her health. If she had known these things, she wouldn't be as sick as she is now. She created it for you to learn to help prevent others from getting as sick as she has.
There was only one part I truly was conflicted on. It was regarding the use of Tom Tick Twister. I have no personal experience with this tick removal tool, but I've always been told to avoid twisting a tick upon removal. I don't know how this tool works, but it appears that it's twisting around the tick. I personally prefer fine point tweezers or the Pro Tick Remedy.
I hope you enjoy the video.
Yesterday I spent the day with one of my closest friends and his family on his birthday. Lyme has taught me a number of things. I can roll of information about Lyme Disease and Ticks in a moment's notice. I don't have to think about it anymore. It is just ingrained. There is one small thing that Lyme taught me. If I could take Lyme away and never have had it in the first place, if that meant not learning this one thing ... I wouldn't do it. I wouldn't give it back. I would take this journey all over again as long as I learned this one thing.
Lyme Disease is very tough on friendships. I've lost some friends along the journey of Lyme. It is just what it is. However, you know how you have friends that you don't realize how special they are until they do something to step it up? Something unthinkable. Well this post is about how a friendship like that came to be. We were merely acquaintances in middle and high school until he stepped it up when I needed it. It had nothing to do with Lyme Disease or health issues. I didn't even know I needed it, but he stepped it up. Ever since, we were tight friends. When we both went to college, we emailed a lot. He became my sounding board. When I was going through unbelievable trials and tribulations, he listened. I didn't want suggestions. I just wanted someone to listen. And listen he did.
When I finally got diagnosed with Lyme, he was one of the first friends I told. He rejoiced with me in the fact that the unknown was finally known. He shared my sorrow in the fact that the journey would be a long one. I shared my concern that I would lose all of my friends and he made me a promise that our friendship would remain strong and intact no matter what I experienced. I am blessed by the way with some of the best friends ever --- Lyme has made those bonds stronger.
When I was undergoing the most experimental and controversial of treatments, he didn't criticize my choices. He didn't question the doctor's choices. He just listened and when I had run out of ride home options --- he offered to pick me up after a treatment. After those treatments, it wasn't pretty. I did not like people to see me like that. It was difficult to walk. It was difficult to talk. The muscles in my mouth didn't work properly after a treatment and it was difficult to swallow my own saliva. And each treatment was slightly different in end results, but I needed rides to the treatment and home from the treatment.
I did not want a "friend" to see me "like that." My husband was my main "escort." He carried me to the treatment always and most of the time he picked me up to carry me home. However, we needed help. So I called on my immediate family. One week, they couldn't help and I thought I was going to have to stay at the doctor's office until night. I was "woah is me-ing" to this friend and he said, "I can pick you up if you need." I was shocked and had to decide if seeing me like that was something he could handle and allowing a friend to see me like that was something I could handle.
I confided in him the things he might possibly see and asked if he could handle it. I trusted him when he said he could handle it. Leave it to me to have the worst reaction ever on the day he had to pick me up. He literally had to carry me to his car, carry me into my home and as I stumbled to try to make it on my own, he picked me up and put me in my own bed. I don't remember much from this day, but I remember thinking how very blessed I was to have a friend that would be willing to literally pick me up from treatment. I was terrified that I would never see him again after he saw me limply laying there looking like that with a mouth full of saliva rolling down my cheek, hitting my chin and drenching my shirt, but that moment brought us closer together as friends.
Like I said, if it meant that I wouldn't learn this one simple thing, I would not take this journey back. I would do it all over again.
Now onto the Advocacy part of my blog post.
Advocating Lyme One Blog Post at a Time.
We are one week into Lyme Disease Awareness Month. This is the 7th post about Lyme Disease in the month. I found a video created by a woman that includes 7 Lyme facts that could have improved her health. If she had known these things, she wouldn't be as sick as she is now. She created it for you to learn to help prevent others from getting as sick as she has.
There was only one part I truly was conflicted on. It was regarding the use of Tom Tick Twister. I have no personal experience with this tick removal tool, but I've always been told to avoid twisting a tick upon removal. I don't know how this tool works, but it appears that it's twisting around the tick. I personally prefer fine point tweezers or the Pro Tick Remedy.
I hope you enjoy the video.
Saturday, May 5, 2012
Cinco de Lymo - the one about teasing
Today is the 5th day of Lyme Awareness Month. The other day I said that I feel like I am in Lyme Tyme Land all of the time. I eat, breathe, sleep, talk, email, facebook, blog Lyme Disease. It's Lyme Tyme all the time.
Today, I'm going to a wedding. I bet I'll get asked at least once while I'm there about Lyme Disease. I'm the Lyme Lady! People sometimes make fun of me either straight to my face of behind my back because I carry information with me about Lyme all the time. But in the end, I'm the first one they call to ask a tick related question. I'm the first one they think about when someone they know or loves gets diagnosed with Lyme Disease. I'm the first one they think about when someone they know or loves finds a tick on themselves in the middle of the night. I'm the first one they want to talk to because they know I'll know the answer.
Yesterday a friend from work called. This friend does not make fun of me. This friend has watched the documentary Under Our Skin. This friend found a tick on her significant other's back and knew enough from me to remove the tick carefully and clean her SO's back thoroughly. Then, the next day she sent me a message asking me to call her. I did. She described the tick. I calmly told her it was more than likely a Lone Star tick, which are popular in NC. I reminded her of the tick removal procedures and some of the symptoms he should watch out for over the next few days. I encouraged her to take him to the doctor, but also don't want to cause panic. He has an appointment anyways on Monday so they should bring up the tick bite and any unusual symptoms. I told her about the tick having numbing agents. These are things that just rolled right off my tongue and I didn't have to think twice about any of them.
However, thanks to Lyme Disease Association --- I have a handy dandy tick card. I will share with you that website later in the month. But, I wanted you to know that ... while we may made fun of for being in Lyme Tyme Land all the time --- we are the first one you think of when you find a tick. And if being made fun of for a few minutes because I carry these cards all the time is the price I have to pay to help you in your time of need and to save you a life time of illness --- then it is well worth it. Keep on teasing. Keep on making fun. I'll take it. And then when you need somebody, you need somebody that knows what you need to know, call me. I'll answer your questions and then when I get off the phone --- I will breathe a sign of relief that your teasing caused you to remember the person to call in your time of need and then pray for you or your family member that the tick that got you won't be as bad as the tick that got me.
Thanks for reading.
**** Now onto today's scheduled post:
Dr. Jemsek is one of the world's renowned LLMD (lyme literate medical doctor). Here is his speech in which he "speaks the truth" about Lyme Disease at the "In the Light Lyme Disease Gala in Charlotte NC. Before Lyme became endemic in the area, he was a specialist (and still is) in HIV/AIDS. He may have been the first ot recognize HIV/AIDS in NC and then LYME Disease. Since he was "evicted" from his medical practice in Charlotte, he moved to South Carolina. He was "asked to leave" and he now has a practice in DC where he treats Lyme patients from all over the world. Please take the time to listen to Dr. J speak the truth. Dr. J discusses the controversy surrounding Lyme Disease and what action needs to be taken to provide patients with better care. He compares Lyme to HIV/AIDS. He talks about doctors that quit on patients.
Today, I'm going to a wedding. I bet I'll get asked at least once while I'm there about Lyme Disease. I'm the Lyme Lady! People sometimes make fun of me either straight to my face of behind my back because I carry information with me about Lyme all the time. But in the end, I'm the first one they call to ask a tick related question. I'm the first one they think about when someone they know or loves gets diagnosed with Lyme Disease. I'm the first one they think about when someone they know or loves finds a tick on themselves in the middle of the night. I'm the first one they want to talk to because they know I'll know the answer.
Yesterday a friend from work called. This friend does not make fun of me. This friend has watched the documentary Under Our Skin. This friend found a tick on her significant other's back and knew enough from me to remove the tick carefully and clean her SO's back thoroughly. Then, the next day she sent me a message asking me to call her. I did. She described the tick. I calmly told her it was more than likely a Lone Star tick, which are popular in NC. I reminded her of the tick removal procedures and some of the symptoms he should watch out for over the next few days. I encouraged her to take him to the doctor, but also don't want to cause panic. He has an appointment anyways on Monday so they should bring up the tick bite and any unusual symptoms. I told her about the tick having numbing agents. These are things that just rolled right off my tongue and I didn't have to think twice about any of them.
However, thanks to Lyme Disease Association --- I have a handy dandy tick card. I will share with you that website later in the month. But, I wanted you to know that ... while we may made fun of for being in Lyme Tyme Land all the time --- we are the first one you think of when you find a tick. And if being made fun of for a few minutes because I carry these cards all the time is the price I have to pay to help you in your time of need and to save you a life time of illness --- then it is well worth it. Keep on teasing. Keep on making fun. I'll take it. And then when you need somebody, you need somebody that knows what you need to know, call me. I'll answer your questions and then when I get off the phone --- I will breathe a sign of relief that your teasing caused you to remember the person to call in your time of need and then pray for you or your family member that the tick that got you won't be as bad as the tick that got me.
Thanks for reading.
**** Now onto today's scheduled post:
Dr. Jemsek is one of the world's renowned LLMD (lyme literate medical doctor). Here is his speech in which he "speaks the truth" about Lyme Disease at the "In the Light Lyme Disease Gala in Charlotte NC. Before Lyme became endemic in the area, he was a specialist (and still is) in HIV/AIDS. He may have been the first ot recognize HIV/AIDS in NC and then LYME Disease. Since he was "evicted" from his medical practice in Charlotte, he moved to South Carolina. He was "asked to leave" and he now has a practice in DC where he treats Lyme patients from all over the world. Please take the time to listen to Dr. J speak the truth. Dr. J discusses the controversy surrounding Lyme Disease and what action needs to be taken to provide patients with better care. He compares Lyme to HIV/AIDS. He talks about doctors that quit on patients.
Friday, May 4, 2012
Day 4 of Lyme Disease Awareness Month
It is the fourth day of Lyme Disease Awareness Month.
I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know. Some of those are LLMD, ILADS and IDSA
LLMD stands for Lyme Literate Medical Doctor.
There are two kinds of doctors that "treat" Lyme. Some are IDSA and some are ILADS. In essence, IDSA doctors don't know the truth about Lyme. ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme). So if you go see a doctor, you want to make sure that they are ILADS affiliated.
ILADS - International Lyme and Associated Diseases Society
IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it actually stands for Infectious Diseases Society of America.
The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis). Dr. Horowitz is a top notice Integrative LLMD. He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease. The video is about 11 minutes long and starts off with someone introducing Dr. H. Dr. H speaks french for the first minute or so, but then switches to English.
I hope you enjoy the video and I hope you find it educational.
http://youtu.be/fRBXpOPMxNE
I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know. Some of those are LLMD, ILADS and IDSA
LLMD stands for Lyme Literate Medical Doctor.
There are two kinds of doctors that "treat" Lyme. Some are IDSA and some are ILADS. In essence, IDSA doctors don't know the truth about Lyme. ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme). So if you go see a doctor, you want to make sure that they are ILADS affiliated.
ILADS - International Lyme and Associated Diseases Society
IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it actually stands for Infectious Diseases Society of America.
The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis). Dr. Horowitz is a top notice Integrative LLMD. He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease. The video is about 11 minutes long and starts off with someone introducing Dr. H. Dr. H speaks french for the first minute or so, but then switches to English.
I hope you enjoy the video and I hope you find it educational.
http://youtu.be/fRBXpOPMxNE
Thursday, May 3, 2012
Day Three Lyme Awareness
https://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/lyme-resource-educators.shtml
So, you've seen tick removal tips and the HULU Under Our Skin.
Next up a video from 1992!
So, you've seen tick removal tips and the HULU Under Our Skin.
Next up a video from 1992!
Things have changed since 1992, but it is sad that in 1992
they knew as much as they knew in 2007 when I got diagnosed. The biggest part that I had trouble with in
the video were regarding transmission (how long the tick is attached and
whether it is transmitted in another way other than an infected tick) and to
flush the tick down the toilet.
Wednesday, May 2, 2012
Lyme Prevention
Yesterday, I shared with everyone how to view Under Our Skin on Hulu.
Today, I want to share with you important information regarding tick removal.
It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.
1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.
2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.
3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.
4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.
5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.
It is important NOT to flush the tick down the toilet. Some people suggest to do this, but ticks can survive a good flush AND the water. If you want, you can send the tick to IgeneX for a Tick Test. It's about 300 bucks for them to test 5 different diseases, but keep in mind that they only test for one strain and each disease may have hundreds of strains. So even if your tick comes back free and clear from disease, it may not be.
There is controversy about how long ticks need to be attached for transmission. *most* sources say that it takes at least 24 hours of attachment to transmit a disease. However at the last ILADS conference, they talked about a research study they had done with a Lyme infected tick and a mouse. They injected radioactive die into the bacteria and then the tick attached to the mouse. Within some amount of time, the bacteria had already left the blood and crossed the blood brain barrier. It was something ridiculous like 30 minutes.
Today, I want to share with you important information regarding tick removal.
It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.
1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.
2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.
3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.
4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.
5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.
It is important NOT to flush the tick down the toilet. Some people suggest to do this, but ticks can survive a good flush AND the water. If you want, you can send the tick to IgeneX for a Tick Test. It's about 300 bucks for them to test 5 different diseases, but keep in mind that they only test for one strain and each disease may have hundreds of strains. So even if your tick comes back free and clear from disease, it may not be.
There is controversy about how long ticks need to be attached for transmission. *most* sources say that it takes at least 24 hours of attachment to transmit a disease. However at the last ILADS conference, they talked about a research study they had done with a Lyme infected tick and a mouse. They injected radioactive die into the bacteria and then the tick attached to the mouse. Within some amount of time, the bacteria had already left the blood and crossed the blood brain barrier. It was something ridiculous like 30 minutes.
Tuesday, February 14, 2012
Weird Symptoms and Pretty Awesome
So the funny thing is that I have symptoms that to a "normal" person would sound weird, but to me there almost always there so they are no longer weird or unusual. I think , "Oh that's back. Hmmm." Then I go on about my day. Then there are symptoms that even I go, "okay that's weird."
I'd show you a picture except it's really impossible to get great pictures of "rashes" or "bumps." Co-incidentally about 10 minutes after taking my first new supplement that's supposed to Detox -- but really .. 10 minutes, I highly doubt they are related -- anywhoo -- what was I saying? Oh yeah, I got into bed and realized that my back was itching.
I've learned that when I itch that it is better to kind of "rub" the itches rather than to "scratch" the itches because when I scratch it leaves red welts on my skin which makes skin irritations look worse than they are so that when I finally look at whatever is itching that I'm surprised by the red raised mess that's there.
Where was I? Oh yeah, so I get into bed and realize my back is itching. I rub my right shoulder to ease the itching and feel tiny bumps. I rub my left shoulder and feel bumps. I ask my husband to get up and check my back and surely enough there is a rash on my back. I thought that was weird. The next morning the rash itself looked to be gone, but it was still a little bumpy by feel. I can't really feel it today.
So today I woke and my throat was hurting. This isn't all entirely unusual for me. Sometimes I wake up and it hurts for about 5 minutes and I'm good to go. I continue about my day and while we're out eating I get this kind of "clogged throat" feeling. It is a feeling I used to get all the time and I can't describe it anymore than I feel like my throat is closing up, but it's actually not swelling at all.
I think that maybe a little piece of food was stuck on the roof of my mouth so I start messing around up there with my tongue and feel a little bump. I get in the vehicle later and look and there are a bunch of little bumps towards the back of my throat including one little white one. *great*
So it's one of a few things that I think is going on.
A: I have some kind of virus that just has to pass.
B: I'm detoxing some kind of awful producing these toxins to release into my skin (and mouth).
C: The Yeast Overgrowth on the inside of my body has come out to play on the outside of my body.
D: A combination of any of the above.
For the record, I haven't had a fever. I don't think it's strep. Also, it's what I get for going out in public with a whole bunch of people yesterday! Should have known, but I had fun! Who can blame a girl for wanting to have fun?
Pretty awesome day even through all the weird symptoms.
I'd show you a picture except it's really impossible to get great pictures of "rashes" or "bumps." Co-incidentally about 10 minutes after taking my first new supplement that's supposed to Detox -- but really .. 10 minutes, I highly doubt they are related -- anywhoo -- what was I saying? Oh yeah, I got into bed and realized that my back was itching.
I've learned that when I itch that it is better to kind of "rub" the itches rather than to "scratch" the itches because when I scratch it leaves red welts on my skin which makes skin irritations look worse than they are so that when I finally look at whatever is itching that I'm surprised by the red raised mess that's there.
Where was I? Oh yeah, so I get into bed and realize my back is itching. I rub my right shoulder to ease the itching and feel tiny bumps. I rub my left shoulder and feel bumps. I ask my husband to get up and check my back and surely enough there is a rash on my back. I thought that was weird. The next morning the rash itself looked to be gone, but it was still a little bumpy by feel. I can't really feel it today.
So today I woke and my throat was hurting. This isn't all entirely unusual for me. Sometimes I wake up and it hurts for about 5 minutes and I'm good to go. I continue about my day and while we're out eating I get this kind of "clogged throat" feeling. It is a feeling I used to get all the time and I can't describe it anymore than I feel like my throat is closing up, but it's actually not swelling at all.
I think that maybe a little piece of food was stuck on the roof of my mouth so I start messing around up there with my tongue and feel a little bump. I get in the vehicle later and look and there are a bunch of little bumps towards the back of my throat including one little white one. *great*
So it's one of a few things that I think is going on.
A: I have some kind of virus that just has to pass.
B: I'm detoxing some kind of awful producing these toxins to release into my skin (and mouth).
C: The Yeast Overgrowth on the inside of my body has come out to play on the outside of my body.
D: A combination of any of the above.
For the record, I haven't had a fever. I don't think it's strep. Also, it's what I get for going out in public with a whole bunch of people yesterday! Should have known, but I had fun! Who can blame a girl for wanting to have fun?
Pretty awesome day even through all the weird symptoms.
Saturday, December 3, 2011
Yes Virginia, there is Lyme Disease
I saw my Lyme Doctor today. Have I said lately how much I love him? In a few months, we'll have been seeing each other for FIVE years. In that time, he's been to FIVE ILADS conferences. He told me at this recent conference he learned about the study that was done regarding a mouse and the Lyme bacteria. I'm not sure that I understood entirely correctly, but I do know that the time part is accurate. Something was put into the borrelia bacteria to make it glow so they could see it in the mouse. And that they could see the glowing bacteria go into the mouse and that within 30 minutes the bacteria was in the blood and that within 6 hours it was out of the blood and into the tissues of the body.
I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."
Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.
IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.
IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.
HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.
I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.
** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **
I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."
Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.
IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.
IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.
HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.
I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.
** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **
Saturday, November 5, 2011
Acceptance
I have often struggled with acceptance over my 35 years of life.
How do I accept things that I do not want (or think I need) in my life? A prime example of this was between 6th and 7th grade, my family moved a couple of counties away. I struggled with acceptance. For the first three years I was there, whenever anyone asked what time I was going home that day, I would say, "I don't know. This is not home for me." I couldn't wait to go back to my old home town. I hated where I lived. It was a difficult thing to swallow that I would not be going back to live there. I struggled with acceptance. Finally, I accepted that it was my home. I began to make friends, best friends.
Then there was the acceptance of Lyme Disease. There were many doctors that just wanted me to accept the multitude of symptoms that I had. They also wanted me to accept the fact that it was all psychological and not a sign of any disease. I wouldn't accept it. I couldn't accept it. Then I sought the help of a phenomenal doctor. He gave me a diagnosis and I accepted it. Lyme Disease. I try not to make it my life, but it is. I live and breath Lyme Disease. If I could, I would open up a "business" that would teach people about Lyme Disease that would help others with Lyme Disease. Though I wouldn't make money doing that, I have to accept that too.
The other part of acceptance is having people accept me for who I am. Most people either like me or they don't. There is no in between. I have a unique personality that annoys some people. In fact, most people don't get me unless they get me. I'm kind of like Lyme Disease in that way. You don't get Lyme unless you get Lyme. And paraphrasing a friend of mine, if they would just get to know you, they'd love you like I do. My friends have accepted me. Acceptance is nice. I like the world accepting me for who I am. And for those that don't, I really shouldn't care. But I do.
December of 1994, I got a letter in the mail. I had always been told that a "huge" package would mean acceptance and a small one would mean rejection. I got the small one. I was crushed. It was the only university I wanted to attend. Then I opened the letter and saw that I was accepted. Myth debunked. Acceptance doesn't just come in big packages. Acceptance sometimes comes in small packages too. I was reminded of this just yesterday when I received another small package. You see, I applied to the local community college to take a couple of courses in the spring. I got a small letter. I was accepted. It's always nice to be accepted.
How do I accept things that I do not want (or think I need) in my life? A prime example of this was between 6th and 7th grade, my family moved a couple of counties away. I struggled with acceptance. For the first three years I was there, whenever anyone asked what time I was going home that day, I would say, "I don't know. This is not home for me." I couldn't wait to go back to my old home town. I hated where I lived. It was a difficult thing to swallow that I would not be going back to live there. I struggled with acceptance. Finally, I accepted that it was my home. I began to make friends, best friends.
Then there was the acceptance of Lyme Disease. There were many doctors that just wanted me to accept the multitude of symptoms that I had. They also wanted me to accept the fact that it was all psychological and not a sign of any disease. I wouldn't accept it. I couldn't accept it. Then I sought the help of a phenomenal doctor. He gave me a diagnosis and I accepted it. Lyme Disease. I try not to make it my life, but it is. I live and breath Lyme Disease. If I could, I would open up a "business" that would teach people about Lyme Disease that would help others with Lyme Disease. Though I wouldn't make money doing that, I have to accept that too.
The other part of acceptance is having people accept me for who I am. Most people either like me or they don't. There is no in between. I have a unique personality that annoys some people. In fact, most people don't get me unless they get me. I'm kind of like Lyme Disease in that way. You don't get Lyme unless you get Lyme. And paraphrasing a friend of mine, if they would just get to know you, they'd love you like I do. My friends have accepted me. Acceptance is nice. I like the world accepting me for who I am. And for those that don't, I really shouldn't care. But I do.
December of 1994, I got a letter in the mail. I had always been told that a "huge" package would mean acceptance and a small one would mean rejection. I got the small one. I was crushed. It was the only university I wanted to attend. Then I opened the letter and saw that I was accepted. Myth debunked. Acceptance doesn't just come in big packages. Acceptance sometimes comes in small packages too. I was reminded of this just yesterday when I received another small package. You see, I applied to the local community college to take a couple of courses in the spring. I got a small letter. I was accepted. It's always nice to be accepted.
Sunday, October 2, 2011
The Lymie Slide
So in August I started really taking notes on how I was feeling. I had noticed back at the end of July that I really wasn't feeling as well as I had been. So I took somewhat detailed notes. The other day I was putting them all together to bring to my appointment Saturday and realized something terrible. I had done the Lymie Slide.
One day of fatigue during a month is one thing, but during week one of August I had three days of fatigue. In week two, there were no fatigue days. However, I did have two days of headaches. In week three of August, I had two straight days of fatigue and one day of headaches. In the month of August: I had 6 days of headaches and 5 days of fatigue and those two things didn't fall on the same day. So out of 31 days, 11 of them I either had severe fatigue or severe headaches. I also had allergy symptoms including sore throat, sneezing, coughing, stuffy nose, etc. There were four or five other symptoms that I hadn't had in a while either.
Then September hit. I also had 6 headache days and 6 fatigue days. (so in 61 days, I had 12 headache days and 11 fatigue days). Four of those fatigue days were in a row and one of them was so bad that in the middle of the day I fell asleep for 3 straight hours. That hasn't happened in I don't know how long. Then to top it off, this past week I have experienced ankle, hip and hand pain. So I was very happy to be able to talk with my LLMD about them today.
Between my symptoms and blood work, we decided it was most likely that my immune system is depressed again. Therefore, we need to boost it. We've been trying to boost it with LDN, but it obviously either isn't working or I'm not taking enough of it to be beneficial. To top it off, I've been having those headaches. We aren't sure if it is Lyme or if it is LDN so I am to stop it for about two weeks to see if I notice a difference in the frequency of headaches. I'm to restart either Beta Glucan or another supplement that I have that is supposed to boost immune support.
My treatment plan for the next few weeks isn't really all that complicated. I'm to continue everything I've been doing, but increase my oral vitamin C and exchange the LDN for the other stuff. Then I'm too add this stuff called Borrelia Series. I really am not quite sure what it does, but in 2007 I did the one called Bartonella Series. I may Herx on this. I may not. Basically if I herx, it means that my immune system is depressed enough that the borrelia bacteria has come back out to play. If it IS back for fun & games, I have to do a little killing action by continuing the series for 4 boxes.
In addition to these series of vials, I will be doing 2 or 3 IVs. I've done these IVs before and if I herx on them, I will also know if the borrelia is back to play. I had them when the Lyme wasn't in action at all and basically felt no bad effects from the IV. I was supposed to get one today, but wasn't hydrated well enough for them to get an IV stick. So on Tuesday I go to get a treatment.
In addition to these, my doctor wants me to get HBOT. I have heard this term many times and for those of you that don't know what it is, it is the Hyperbaric Oxygen Treatment Chamber. I get into a small thing that gives me lots of Oxygen? Honestly I really don't know what it does, but it's supposed to help. I'm supposed to do 4 days in a row at 90 minutes each "dive." So all in all:
2 to 3 IV's of Vitamin C
4 HBOT treatments
10 vials (up to 40 vials) of Borrelia Series
Mixing it up for two weeks other supplement instead of the LDN Cream.
Increasing Oral Vitamin C.
Keeping on the other supplements I'm already on.
OOOOO and do this saliva test. Yeah I have to spit into four vials. Weird huh? Almost as weird as the time I had pee in my fridge!
And while I know they don't read the blog: I have to give a shout out to a few people that made today go a little smoother.
1. Dr. P. You are my hero. I would not be alive without you.
2. Jennifer (IV lady). Thanks for not sticking me more than once after you realized I wasn't hydrated enough.
3. Rob. to my best husband (and my only husband!), you listen even when I think you're not listening. You know what I need even before I do. You rock!
4.John - to my best friend, you make me snort when I laugh even when I am ready to cry. You give the best hugs especially when I need them.
5. Alisa, Whitney and Melisa, you three girls gave me the Lyme support I needed today. I don't tell you enough how much you three mean to me. I'm blessed to have the best Lyme friends there are.
One day of fatigue during a month is one thing, but during week one of August I had three days of fatigue. In week two, there were no fatigue days. However, I did have two days of headaches. In week three of August, I had two straight days of fatigue and one day of headaches. In the month of August: I had 6 days of headaches and 5 days of fatigue and those two things didn't fall on the same day. So out of 31 days, 11 of them I either had severe fatigue or severe headaches. I also had allergy symptoms including sore throat, sneezing, coughing, stuffy nose, etc. There were four or five other symptoms that I hadn't had in a while either.
Then September hit. I also had 6 headache days and 6 fatigue days. (so in 61 days, I had 12 headache days and 11 fatigue days). Four of those fatigue days were in a row and one of them was so bad that in the middle of the day I fell asleep for 3 straight hours. That hasn't happened in I don't know how long. Then to top it off, this past week I have experienced ankle, hip and hand pain. So I was very happy to be able to talk with my LLMD about them today.
Between my symptoms and blood work, we decided it was most likely that my immune system is depressed again. Therefore, we need to boost it. We've been trying to boost it with LDN, but it obviously either isn't working or I'm not taking enough of it to be beneficial. To top it off, I've been having those headaches. We aren't sure if it is Lyme or if it is LDN so I am to stop it for about two weeks to see if I notice a difference in the frequency of headaches. I'm to restart either Beta Glucan or another supplement that I have that is supposed to boost immune support.
My treatment plan for the next few weeks isn't really all that complicated. I'm to continue everything I've been doing, but increase my oral vitamin C and exchange the LDN for the other stuff. Then I'm too add this stuff called Borrelia Series. I really am not quite sure what it does, but in 2007 I did the one called Bartonella Series. I may Herx on this. I may not. Basically if I herx, it means that my immune system is depressed enough that the borrelia bacteria has come back out to play. If it IS back for fun & games, I have to do a little killing action by continuing the series for 4 boxes.
In addition to these series of vials, I will be doing 2 or 3 IVs. I've done these IVs before and if I herx on them, I will also know if the borrelia is back to play. I had them when the Lyme wasn't in action at all and basically felt no bad effects from the IV. I was supposed to get one today, but wasn't hydrated well enough for them to get an IV stick. So on Tuesday I go to get a treatment.
In addition to these, my doctor wants me to get HBOT. I have heard this term many times and for those of you that don't know what it is, it is the Hyperbaric Oxygen Treatment Chamber. I get into a small thing that gives me lots of Oxygen? Honestly I really don't know what it does, but it's supposed to help. I'm supposed to do 4 days in a row at 90 minutes each "dive." So all in all:
2 to 3 IV's of Vitamin C
4 HBOT treatments
10 vials (up to 40 vials) of Borrelia Series
Mixing it up for two weeks other supplement instead of the LDN Cream.
Increasing Oral Vitamin C.
Keeping on the other supplements I'm already on.
OOOOO and do this saliva test. Yeah I have to spit into four vials. Weird huh? Almost as weird as the time I had pee in my fridge!
And while I know they don't read the blog: I have to give a shout out to a few people that made today go a little smoother.
1. Dr. P. You are my hero. I would not be alive without you.
2. Jennifer (IV lady). Thanks for not sticking me more than once after you realized I wasn't hydrated enough.
3. Rob. to my best husband (and my only husband!), you listen even when I think you're not listening. You know what I need even before I do. You rock!
4.John - to my best friend, you make me snort when I laugh even when I am ready to cry. You give the best hugs especially when I need them.
5. Alisa, Whitney and Melisa, you three girls gave me the Lyme support I needed today. I don't tell you enough how much you three mean to me. I'm blessed to have the best Lyme friends there are.
Monday, September 26, 2011
May 2007
So I'm going through old emails. Trying to delete things. I have over 3,000 messages in my sent folder. So I am starting simple. I'll take 26 days to work through it. One letter per day. Yesterday I deleted most of the A's. Today I tackled the B's, but I read some of them. My heart pitted into my stomach. I read this that I had sent to a friend in May of 2007. This was a couple of months after I was diagnosed with Lyme.
"Last night was absolutely horrid. I even took pictures of my face. So I got into bed and notice all these little small reddish purple dots all over my skin. I think, "That's odd."In an instant, my elbows start giving me lots of pain. It jumped from one joint to the next. The pain was excruciating and the bumps were getting to become a brighter purple. Within moments, I start feeling nauseated.
I got up. I had explosive diarrhea. Afterwards, I noticed my face in the mirror. Those red/purplish dots are everywhere and I have a huge rash on my face. I get back in the bed. All the sudden I knew if I didn't get up right away I was gonna have a huge mess on my hands. It was horrible and wretched. I have never thrown up that hard or that much. The purple dots on my body slowly go away. My face is slowly returning to normal. This moring the rash on my body is completely gone (except this little pimply dot looking things which are almost always there anyways),but the dots around my eyes are not gone. I thought once I started treatment that I would feel better and that these episodes would stop. When will these things end? How long is enough? I'm so tired."
I don't remember this specific day, but I remember days and months and years like this.
"Last night was absolutely horrid. I even took pictures of my face. So I got into bed and notice all these little small reddish purple dots all over my skin. I think, "That's odd."In an instant, my elbows start giving me lots of pain. It jumped from one joint to the next. The pain was excruciating and the bumps were getting to become a brighter purple. Within moments, I start feeling nauseated.
I got up. I had explosive diarrhea. Afterwards, I noticed my face in the mirror. Those red/purplish dots are everywhere and I have a huge rash on my face. I get back in the bed. All the sudden I knew if I didn't get up right away I was gonna have a huge mess on my hands. It was horrible and wretched. I have never thrown up that hard or that much. The purple dots on my body slowly go away. My face is slowly returning to normal. This moring the rash on my body is completely gone (except this little pimply dot looking things which are almost always there anyways),but the dots around my eyes are not gone. I thought once I started treatment that I would feel better and that these episodes would stop. When will these things end? How long is enough? I'm so tired."
I don't remember this specific day, but I remember days and months and years like this.
Sunday, August 21, 2011
What Lyme gave to me
So I was telling a good friend this story and she was absolutely blown away. It was after thinking about what she had said that I realized that Lyme Disease gave me a truly wonderful gift.
Prior to my Lyme Diagnosis, I was terribly shy. And when I say shy, I mean sometimes if I had to talk in front of people or to new people ... I would literally get sick afterward. Now one would think that because I was in the band, colorguard, winterguard, and a dancer that there was no way I could feel that way, but truth be told ... when I was participating in those items I was portraying a character. I wasn't me.
As soon as I stepped onto the football field, I was a different person. Ask me about Guard and I could have talked for hours. If you knew me back then, you may not have realized I was shy because well ... you KNEW me. The trouble was getting to know me. My best friend has always said that if people would just get to know me then they'd love me. The trouble was letting them in to get to know me. Some people just had the gift to get right inside my heart and others I put up this wall.
Then I was diagnosed with Lyme. Friends left. I felt an overwhelming sadness. People I knew a lot of my life were disappearing like flies. I figured they just couldn't handle. What's odd is that they handled things just fine when it was undiagnosed and I just had symptoms, but once the doctor put a name on it ... they just vanished.
I started a small group with a few of my Lyme friends that live in North & South Carolina back in the last part of 07. It was my friend Sarah (that I went to the HS graduation a couple of years ago) in South Carolina & I that were discussing the possibility of a small group. We talked back & forth on the computer and created a great name for our group (I don't want to say b.c I don't want it to be inundated with new requests from people). Sarah drew something up and my friend Missy graphically designed it so that we would have a beautiful logo.
A couple of weeks in, we had about 8 friends. Our close online buddies that we talked to daily. I never imagined that it would grow to be more than 15. Soon we got our first request for someone we had never spoken to. We knew that we had to keep our small group safe so I created a small survey to send to the people that asked to join us (especially for those that we did not know or someone in the group could not vouch for!). As I go to different Lyme events, I find out if they are on FB. As I become friends with them, I add them to the group. Now we are almost at 50 members.
You may ask, how does this get back to what Lyme gave to you? Well, I have friends online that understand exactly what I've been through. In reverse, I can understand exactly what they are going through. We are friends. It's simple as that. We are advocates for Lyme Disease. Some of them have transitioned from "My Lyme friend" just to "My friend." You may remember when I went to the NC Lyme Walk and met several Lymies. I'm not very close online friends with several of them. I had no problems talking with them and I didn't even feel a tinge of nausea of meeting them and talking with them. This is just a pure gift of Lyme.
The story that made my friend go "What? seriously? You did that?" Well during the week I had been talking with two online friends. Whitney (my friend that had the benefit raffle and the articles in the paper) & Sarah J. We decided that we would get together at Whitney's house and hang out for the morning. Whitney & I had never met Sarah, but thought it would be safe for us to meet at Whitney's house (we've all been talking for sometime). Well Friday morning Whitney's Mom called and told me that she wasn't feeling well. That we should postpone our fun morning. (and by Fun I mean, sitting there complaining about Lyme Disease and planning our first advocacy event). So I called Sarah J and left a message. I thought we wouldn't meet and started heading home.
She called me back and I mentioned that maybe we could meet anyways. So I plugged in a new address to the GPS and off I went. So yes, I drove to a mall (one that I rarely go to) and met with someone I've never met with before and it was as if we were old friends hanging out. Crazy. It was exactly that way when I met Whitney the first time. Now granted all these people I have been talking to online for sometime so it's not exactly like they are new people, but still.
I just realized the other day that I have now met 15 of the 47 Lyme people in our small community. That's amazing! I'm in the beginning stages of planning an event for all of us (like maybe a Saturday luncheon somewhere to plan for how we can improve the knowledge of Lyme Disease in North Carolina). So excited!
Prior to my Lyme Diagnosis, I was terribly shy. And when I say shy, I mean sometimes if I had to talk in front of people or to new people ... I would literally get sick afterward. Now one would think that because I was in the band, colorguard, winterguard, and a dancer that there was no way I could feel that way, but truth be told ... when I was participating in those items I was portraying a character. I wasn't me.
As soon as I stepped onto the football field, I was a different person. Ask me about Guard and I could have talked for hours. If you knew me back then, you may not have realized I was shy because well ... you KNEW me. The trouble was getting to know me. My best friend has always said that if people would just get to know me then they'd love me. The trouble was letting them in to get to know me. Some people just had the gift to get right inside my heart and others I put up this wall.
Then I was diagnosed with Lyme. Friends left. I felt an overwhelming sadness. People I knew a lot of my life were disappearing like flies. I figured they just couldn't handle. What's odd is that they handled things just fine when it was undiagnosed and I just had symptoms, but once the doctor put a name on it ... they just vanished.
I started a small group with a few of my Lyme friends that live in North & South Carolina back in the last part of 07. It was my friend Sarah (that I went to the HS graduation a couple of years ago) in South Carolina & I that were discussing the possibility of a small group. We talked back & forth on the computer and created a great name for our group (I don't want to say b.c I don't want it to be inundated with new requests from people). Sarah drew something up and my friend Missy graphically designed it so that we would have a beautiful logo.
A couple of weeks in, we had about 8 friends. Our close online buddies that we talked to daily. I never imagined that it would grow to be more than 15. Soon we got our first request for someone we had never spoken to. We knew that we had to keep our small group safe so I created a small survey to send to the people that asked to join us (especially for those that we did not know or someone in the group could not vouch for!). As I go to different Lyme events, I find out if they are on FB. As I become friends with them, I add them to the group. Now we are almost at 50 members.
You may ask, how does this get back to what Lyme gave to you? Well, I have friends online that understand exactly what I've been through. In reverse, I can understand exactly what they are going through. We are friends. It's simple as that. We are advocates for Lyme Disease. Some of them have transitioned from "My Lyme friend" just to "My friend." You may remember when I went to the NC Lyme Walk and met several Lymies. I'm not very close online friends with several of them. I had no problems talking with them and I didn't even feel a tinge of nausea of meeting them and talking with them. This is just a pure gift of Lyme.
The story that made my friend go "What? seriously? You did that?" Well during the week I had been talking with two online friends. Whitney (my friend that had the benefit raffle and the articles in the paper) & Sarah J. We decided that we would get together at Whitney's house and hang out for the morning. Whitney & I had never met Sarah, but thought it would be safe for us to meet at Whitney's house (we've all been talking for sometime). Well Friday morning Whitney's Mom called and told me that she wasn't feeling well. That we should postpone our fun morning. (and by Fun I mean, sitting there complaining about Lyme Disease and planning our first advocacy event). So I called Sarah J and left a message. I thought we wouldn't meet and started heading home.
She called me back and I mentioned that maybe we could meet anyways. So I plugged in a new address to the GPS and off I went. So yes, I drove to a mall (one that I rarely go to) and met with someone I've never met with before and it was as if we were old friends hanging out. Crazy. It was exactly that way when I met Whitney the first time. Now granted all these people I have been talking to online for sometime so it's not exactly like they are new people, but still.
I just realized the other day that I have now met 15 of the 47 Lyme people in our small community. That's amazing! I'm in the beginning stages of planning an event for all of us (like maybe a Saturday luncheon somewhere to plan for how we can improve the knowledge of Lyme Disease in North Carolina). So excited!
Sunday, July 24, 2011
Lyme Walk 2011 in NC
Read this Article in the paper regarding the walk I went to on Saturday morning. This article will give you the details about why the walk was being held in the little town of Albemarle North Carolina. Now onto my story.
Prior to my Lyme friend Whitney's benefit raffle, I was invited to this gathering a little over two hours from my home. I thought it would be fun to go, but wrestled with the thought of actually going. I always enjoy hanging out with fellow Lyme patients, but there are several reasons why I thought I wouldn't go. The thought process went something like this:
1. I'm going to spend over 4 1/2 hours in the car.
2. I don't think I'll know anyone there.
3. AND It's going to be OVER 100 DEGREES OUTSIDE!!!!
4. I could easily get sunburned or bit by another tick.
There were however three reasons why I thought that I should go.
1. I knew that I would know Wendy & Brenda from online and that I would have a great time with everyone once I arrived.
2. My ability to advise those that are just starting their Lyme journey or those that knew nothing about the disease.
3. I would be capable of capturing magnificent snapshots of moments.
So after convincing my husband that we should go (despite the HEAT that kept hot dogs warm long after they were cooked!), we went to the store and picked up bottles of Gatorade and water. We purchased three huge bags of ice. Yesterday morning we got up at 5am sharp and packed our car with the cooler full of ice with our drinks, sunscreen, bug spray and our awesome Olympus E-620 SLR camera with extra flash!
Well the drive there was pretty boring. However, I must say "YOU might be in the middle of nowhere IF you see a lady on the side of the road having a little mini yard sale on the hood of her car right near a horse & buggy caution sign." We were right smack dab in the middle of no where. We arrived around 8:20 and I generously applied both sunscreen & bug spray to my skin.
I took a walk over to all the Lyme Clad ladies & gentlemen and threw myself right smack dab in the conversation. Now I am telling you, Lyme has given me many problems. However, it also gave me a huge advantage. Five years ago, there is no way I would have walked into a place with several dozen strangers and felt comfortable enough just to be myself. No way, no how.
Shortly after arriving, I began snapping photos. I took almost four hours worth of photos. I took well over 300 photographs. I won't share them all, but to me these photos are priceless.
Lyme Disease Awareness Board: There were many brochures on Lyme to share with those that participated in the walk.
Tick Remover Tools provided by IgeneX.
Presents for the Lymies. Brenda & Wendy were kind enough to make up packages for those of us in attendance that had Lyme. So very sweet.
Holly presenting the Lyme Awareness shirts.
Ernie & Brenda talking about Lyme Disease.
Lyme Bracelet from May Day
ILADS bag.
Two Lymies sharing a moment.
Brenda counting funds raised.
My new Lyme friend & me.
So the biggest thing that happened was that I got to talk to a young lady I haven't connected with before online. She was the sweetest thing ever. I talked with her and her Dad at length. They got to take home the documentary Under Our Skin. The amazing thing is that I'm more than twice her age! In fact, I'm twice her age plus 3!
What an amazing day.
Prior to my Lyme friend Whitney's benefit raffle, I was invited to this gathering a little over two hours from my home. I thought it would be fun to go, but wrestled with the thought of actually going. I always enjoy hanging out with fellow Lyme patients, but there are several reasons why I thought I wouldn't go. The thought process went something like this:
1. I'm going to spend over 4 1/2 hours in the car.
2. I don't think I'll know anyone there.
3. AND It's going to be OVER 100 DEGREES OUTSIDE!!!!
4. I could easily get sunburned or bit by another tick.
There were however three reasons why I thought that I should go.
1. I knew that I would know Wendy & Brenda from online and that I would have a great time with everyone once I arrived.
2. My ability to advise those that are just starting their Lyme journey or those that knew nothing about the disease.
3. I would be capable of capturing magnificent snapshots of moments.
So after convincing my husband that we should go (despite the HEAT that kept hot dogs warm long after they were cooked!), we went to the store and picked up bottles of Gatorade and water. We purchased three huge bags of ice. Yesterday morning we got up at 5am sharp and packed our car with the cooler full of ice with our drinks, sunscreen, bug spray and our awesome Olympus E-620 SLR camera with extra flash!
Well the drive there was pretty boring. However, I must say "YOU might be in the middle of nowhere IF you see a lady on the side of the road having a little mini yard sale on the hood of her car right near a horse & buggy caution sign." We were right smack dab in the middle of no where. We arrived around 8:20 and I generously applied both sunscreen & bug spray to my skin.
I took a walk over to all the Lyme Clad ladies & gentlemen and threw myself right smack dab in the conversation. Now I am telling you, Lyme has given me many problems. However, it also gave me a huge advantage. Five years ago, there is no way I would have walked into a place with several dozen strangers and felt comfortable enough just to be myself. No way, no how.
Shortly after arriving, I began snapping photos. I took almost four hours worth of photos. I took well over 300 photographs. I won't share them all, but to me these photos are priceless.
Lyme Disease Awareness Board: There were many brochures on Lyme to share with those that participated in the walk.
Tick Remover Tools provided by IgeneX.
Presents for the Lymies. Brenda & Wendy were kind enough to make up packages for those of us in attendance that had Lyme. So very sweet.
Holly presenting the Lyme Awareness shirts.
Ernie & Brenda talking about Lyme Disease.
Lyme Bracelet from May Day
ILADS bag.
Two Lymies sharing a moment.
Brenda counting funds raised.
My new Lyme friend & me.
So the biggest thing that happened was that I got to talk to a young lady I haven't connected with before online. She was the sweetest thing ever. I talked with her and her Dad at length. They got to take home the documentary Under Our Skin. The amazing thing is that I'm more than twice her age! In fact, I'm twice her age plus 3!
What an amazing day.
Sunday, July 17, 2011
Living the REMISSION Lyme Life
Yesterday was my wonderful Lyme appointment. I say wonderful because one thing didn't happen. There was no Grab & Jab. That happens July 29th. I say wonderful because of something I read after I left his office.
So at each visit, I go into the waiting room. I sign a piece of paper that says I'm there, what time I arrive and whether I want treatment or not. It's just a cover all our behinds kind of thing. When I'm there for a follow up, I have to fill out another piece of paper that asks what specific improvements or problems I've had since my last visit. Also have to say what specific issues I want addressed and any medications to be listed. I'm taken back for my temp, weight, blood pressure (sitting and standing) and pulse Ox. These are typically all good. Though I did have problems with my temp for a while (being way too low .. and occasionally too high) and my weight was significantly too low, but we've worked out both of those issues. I'm brought back to the waiting room while I read a new set of policies just put in effect and wait for my hero to peer his head through the door.
I was sure to get a smile on his face because while he'd never admit it out loud, I know I'm one of his favorite people. After all, he took me to congress and our picture was in some journal together (though I did never see it). We sat together to see our first viewing of Under Our Skin. So a warm smile from him when he thinks about how far I've come in four plus years is very much expected.
He opens the door and peers his head. Before he could even get my name out, I've bolted out of my seat. We walk back to his most comfortable office where I proceed to tell him that I forgot my cheerleading outfit (which doesn't fit anymore ... :( but symbolic b.c I am his biggest cheer leader) and he kindly reminds me that I used to be the person that always came in dressed crazily. I knew he meant that he could always count on me for a laugh.
We sat down and I haven't been in since December. So he wanted to recount how I've been. I tell him first how well things have gone. I've only been on antibiotics once for Bronchitis since our last visit and those went well. Then, I had to mention the symptoms. I mean I was there to tell him about my symptoms. Well I chart ALL of my symptoms in this calender on google. The problem was that my printer wasn't working and my husband wasn't home to fix it. So I had to rely on the good ole memory banks. That's hard to do sometimes, but I knew the few problems I wanted to discuss.
I told him about the few headaches I've had (which I'm sporting one right now actually). I told him about the problem sleeping sometimes where I wake up from a vivid dream and struggle getting back to sleep. And then there are some nights where I sleep very little. Now those of you that really know me know that in days past I could sleep 12 hours without waking once and at the end of the 12 hours honestly I could wake up about an hour and go back to sleep no problems. I talked about my staring into space and not really being there and spacing out moments. There was one other too private thing (which really isn't that private, but I just don't feel like discussing it on the blog) that I discussed with him.
He dug through my chart and reminded me of some serious symptoms I had in the past. We smiled b.c I had gotten through them. We discussed LDN at length. Discussing that it could possibly be the cause of some of my symptoms, but more likely than not it was something else causing the problem. We discussed how in the past my Progesterone levels were low and this could cause every single one of my problems. So on the 29th, I'll go and have those checked out. We discussed some mineral deficiencies. I've had problems in the past (and probably still have problems). These medicines make me feel so extremely nauseated. So I tend not to take them. So we're working on solutions for that.
We discussed our mutual fear of Lyme creeping back or getting a new infection over every little small symptom. Though I told him I try not to let that anxiety rule my life as it did two years ago. I told him I was in the paper. Oh did you not know? Google News of Orange: Or better yet. It won't be up long b.c they change it weekly, but a picture of Whitney & I were on the front page of News of Orange.
Here is the photo:
http://www.aconews.com/content/current/noc/front/front.pdf
Anyways, in the article you will read what it says under it:
"Both women suffer from Lyme disease, though Allton has already completed her treatment and is almost entirely in remission while Corn is just starting her antibiotic series. Before she could start, Corn had to build up her strength by taking supplements.
Erin Wiltgen / News of Orange"
I wanted to share this with you because ... it's official.
All indications are that Lyme remains in remission potentially even eradicated (though concerns remain that it could return or I could get a new infection). Dr. P said all of this based on my clinical symptoms just as he diagnosed me clinically. However, once my blood work is done and comes back (which should be back by the middle of August) we will know for certain that my symptoms remaining are hormonal in nature and not from Lyme.
Can you see me jumping for joy? I'm THRILLED.
So at each visit, I go into the waiting room. I sign a piece of paper that says I'm there, what time I arrive and whether I want treatment or not. It's just a cover all our behinds kind of thing. When I'm there for a follow up, I have to fill out another piece of paper that asks what specific improvements or problems I've had since my last visit. Also have to say what specific issues I want addressed and any medications to be listed. I'm taken back for my temp, weight, blood pressure (sitting and standing) and pulse Ox. These are typically all good. Though I did have problems with my temp for a while (being way too low .. and occasionally too high) and my weight was significantly too low, but we've worked out both of those issues. I'm brought back to the waiting room while I read a new set of policies just put in effect and wait for my hero to peer his head through the door.
I was sure to get a smile on his face because while he'd never admit it out loud, I know I'm one of his favorite people. After all, he took me to congress and our picture was in some journal together (though I did never see it). We sat together to see our first viewing of Under Our Skin. So a warm smile from him when he thinks about how far I've come in four plus years is very much expected.
He opens the door and peers his head. Before he could even get my name out, I've bolted out of my seat. We walk back to his most comfortable office where I proceed to tell him that I forgot my cheerleading outfit (which doesn't fit anymore ... :( but symbolic b.c I am his biggest cheer leader) and he kindly reminds me that I used to be the person that always came in dressed crazily. I knew he meant that he could always count on me for a laugh.
We sat down and I haven't been in since December. So he wanted to recount how I've been. I tell him first how well things have gone. I've only been on antibiotics once for Bronchitis since our last visit and those went well. Then, I had to mention the symptoms. I mean I was there to tell him about my symptoms. Well I chart ALL of my symptoms in this calender on google. The problem was that my printer wasn't working and my husband wasn't home to fix it. So I had to rely on the good ole memory banks. That's hard to do sometimes, but I knew the few problems I wanted to discuss.
I told him about the few headaches I've had (which I'm sporting one right now actually). I told him about the problem sleeping sometimes where I wake up from a vivid dream and struggle getting back to sleep. And then there are some nights where I sleep very little. Now those of you that really know me know that in days past I could sleep 12 hours without waking once and at the end of the 12 hours honestly I could wake up about an hour and go back to sleep no problems. I talked about my staring into space and not really being there and spacing out moments. There was one other too private thing (which really isn't that private, but I just don't feel like discussing it on the blog) that I discussed with him.
He dug through my chart and reminded me of some serious symptoms I had in the past. We smiled b.c I had gotten through them. We discussed LDN at length. Discussing that it could possibly be the cause of some of my symptoms, but more likely than not it was something else causing the problem. We discussed how in the past my Progesterone levels were low and this could cause every single one of my problems. So on the 29th, I'll go and have those checked out. We discussed some mineral deficiencies. I've had problems in the past (and probably still have problems). These medicines make me feel so extremely nauseated. So I tend not to take them. So we're working on solutions for that.
We discussed our mutual fear of Lyme creeping back or getting a new infection over every little small symptom. Though I told him I try not to let that anxiety rule my life as it did two years ago. I told him I was in the paper. Oh did you not know? Google News of Orange: Or better yet. It won't be up long b.c they change it weekly, but a picture of Whitney & I were on the front page of News of Orange.
Here is the photo:
http://www.aconews.com/content/current/noc/front/front.pdf
Anyways, in the article you will read what it says under it:
"Both women suffer from Lyme disease, though Allton has already completed her treatment and is almost entirely in remission while Corn is just starting her antibiotic series. Before she could start, Corn had to build up her strength by taking supplements.
Erin Wiltgen / News of Orange"
I wanted to share this with you because ... it's official.
All indications are that Lyme remains in remission potentially even eradicated (though concerns remain that it could return or I could get a new infection). Dr. P said all of this based on my clinical symptoms just as he diagnosed me clinically. However, once my blood work is done and comes back (which should be back by the middle of August) we will know for certain that my symptoms remaining are hormonal in nature and not from Lyme.
Can you see me jumping for joy? I'm THRILLED.
Sunday, July 10, 2011
My friend - Whitney
Whitney & I have a funny (in an irony small world) story to tell.
So in March 2011, I received a request on facebook. I set up a VERY small group a few years ago for my friends in NC and SC that have Lyme. When we started, there were maybe 5 of us. Now it's grown to 37 of us. I personally now have met 10 of them including Whitney. So in March I received a "I want to join your group" request. Whenever I get one of these requests, I pretty much send back some questions to the person. It goes something like this:
Hi, My name is Jennifer and I'm the cofounder of (insert group name here). In order to process your request, I need some information from you.
1. Do you have Lyme?
2. Where do you live?
3. How did you hear about the group?
She replies back that she lives in (----insert city name here---- which is about an hour and 10 minutes from me actually). That she's not sure that she has Lyme, but is certain she does. She goes on to tell me a little bit about her symptoms and while usually I don't add people that aren't certain they have Lyme, I figured what the harm. Plus on her friend's list we had a friend in common. And it was a real life friend. So I partially wondered if my friend had told her about my story and was also convinced it was Lyme. In hindsight, they don't know each other. My friend probably thinks that Whitney is another Whitney, but that's another story for another day.
So anyways, Whitney joins my group and we chat for a while. I highly recommend my doctor and to my surprise she starts to go to him. I often will refer people to my Lyme doctor, but honestly 9 out of 10 people start somewhere else first and then come back to me 6 to 10 months later asking for the name of my doctor again.
Well when I first started seeing him, I was completely overwhelmed. All the medications and supplements was enough to drive anyone crazy, much less someone consumed with neuroborreliosis (or with the 'chetes' as we like to call them). So I took a morning and went over to help her organize a chart for her medicine. We became fast friends.
So yesterday, I went to her raffle benefit. OH My WORD. We laughed and laughed until we could laugh no more. We shared our laughter with three other Lymies. Two were from our small group. What a blessing. I didn't win the TV, but I did win award winning looks like this:
Unfortunately, my camera was dying and I didn't get a photo on my camera of Whitney & me.
Hopefully the photo that the reporter took will be much more flattering of the both of us. Yes, there was a reporter. Now most of the time people say "reporter" and I get so nervous that I revert back to introverted Jennifer. Well I met Erin and just absolutely felt like she was friend I hadn't met yet. She was completely awesome and has done two amazing stories on Whitney. I think there will be a third story and she asked for the correct spelling of my name. So I'll probably be in the paper coming up soon of me & my newest best Lyme friend.
Ps. The another story for another day can be shortened for today:
My mother works with a lady that has the same name as Whitney's mother who also has a daughter named Whitney. They live a few counties apart. So my friend Whitney gets a lot of the other Whitney's friend requests. So more than likely, my friend *T* thought she was the other Whitney.
Pps: want to read the stories?
First Lyme article on Whitney: http://www.aconews.com/articles/2011/05/19/noc/news/news13.txt
Second Lyme article on Whitney: http://www.aconews.com/articles/2011/07/06/noc/news/news7.txt
So in March 2011, I received a request on facebook. I set up a VERY small group a few years ago for my friends in NC and SC that have Lyme. When we started, there were maybe 5 of us. Now it's grown to 37 of us. I personally now have met 10 of them including Whitney. So in March I received a "I want to join your group" request. Whenever I get one of these requests, I pretty much send back some questions to the person. It goes something like this:
Hi, My name is Jennifer and I'm the cofounder of (insert group name here). In order to process your request, I need some information from you.
1. Do you have Lyme?
2. Where do you live?
3. How did you hear about the group?
She replies back that she lives in (----insert city name here---- which is about an hour and 10 minutes from me actually). That she's not sure that she has Lyme, but is certain she does. She goes on to tell me a little bit about her symptoms and while usually I don't add people that aren't certain they have Lyme, I figured what the harm. Plus on her friend's list we had a friend in common. And it was a real life friend. So I partially wondered if my friend had told her about my story and was also convinced it was Lyme. In hindsight, they don't know each other. My friend probably thinks that Whitney is another Whitney, but that's another story for another day.
So anyways, Whitney joins my group and we chat for a while. I highly recommend my doctor and to my surprise she starts to go to him. I often will refer people to my Lyme doctor, but honestly 9 out of 10 people start somewhere else first and then come back to me 6 to 10 months later asking for the name of my doctor again.
Well when I first started seeing him, I was completely overwhelmed. All the medications and supplements was enough to drive anyone crazy, much less someone consumed with neuroborreliosis (or with the 'chetes' as we like to call them). So I took a morning and went over to help her organize a chart for her medicine. We became fast friends.
So yesterday, I went to her raffle benefit. OH My WORD. We laughed and laughed until we could laugh no more. We shared our laughter with three other Lymies. Two were from our small group. What a blessing. I didn't win the TV, but I did win award winning looks like this:
Unfortunately, my camera was dying and I didn't get a photo on my camera of Whitney & me.
Hopefully the photo that the reporter took will be much more flattering of the both of us. Yes, there was a reporter. Now most of the time people say "reporter" and I get so nervous that I revert back to introverted Jennifer. Well I met Erin and just absolutely felt like she was friend I hadn't met yet. She was completely awesome and has done two amazing stories on Whitney. I think there will be a third story and she asked for the correct spelling of my name. So I'll probably be in the paper coming up soon of me & my newest best Lyme friend.
Ps. The another story for another day can be shortened for today:
My mother works with a lady that has the same name as Whitney's mother who also has a daughter named Whitney. They live a few counties apart. So my friend Whitney gets a lot of the other Whitney's friend requests. So more than likely, my friend *T* thought she was the other Whitney.
Pps: want to read the stories?
First Lyme article on Whitney: http://www.aconews.com/articles/2011/05/19/noc/news/news13.txt
Second Lyme article on Whitney: http://www.aconews.com/articles/2011/07/06/noc/news/news7.txt
Saturday, May 7, 2011
Lyme Awareness
Part of Lyme Awareness is truthfully being away that Lyme just never really goes away. So in this truth, I have to look at myself. I have to remember that it is always there. It may be hidden, but it is there. I must keep working to keep my immune system in good shape so that the Lyme bug doesn't come out and wreck my body.
Over the past few months I have experienced several health set backs. I've been on antibiotics twice for different things and recently (this past week) experienced the ever so much fun urinary tract infection. I didn't go get tested for it, but I knew it was there. I also have this most wonderful supplement for Urinary Tract Support called Mannose D Powder. I decided that I would give it try and see if it would help before going in to the doctors to get tested (and then antibiotics when the test proved positive).
It's something that can be taken 1/4 teaspoon to 1 teaspoon 1 to 3 times a day. In the past, I have used 1/2 teaspoon twice a day. This time since my symptoms were so severe, I decided to go ahead and max dose it at 1 teaspoon 3 times a day. I did this for 3 full days and then decreased it to 1/2 teaspoon 3 times a day. Yesterday I did it for 1/2 teaspoon 2 a day and today I haven't even taken my dose yet. However, I'm not going nearly as frequently and things are improving. I'll probably stay at this 1/4 teaspoon 3 times a day for a few more days and then stop. If things go back, then I'll have to go see a doctor for testing. However I'm confident that things will stay great.
With all of this in mind, I decided it was time to go back to the regiment that I should have been on. Back to the LDN. 1mg last night. I can tell today. :( Headache, swollen hands and feeling hot (though I don't have a temp). I just got to push through this initial phase. Wish me luck and remember
Stay Lyme Aware.
Over the past few months I have experienced several health set backs. I've been on antibiotics twice for different things and recently (this past week) experienced the ever so much fun urinary tract infection. I didn't go get tested for it, but I knew it was there. I also have this most wonderful supplement for Urinary Tract Support called Mannose D Powder. I decided that I would give it try and see if it would help before going in to the doctors to get tested (and then antibiotics when the test proved positive).
It's something that can be taken 1/4 teaspoon to 1 teaspoon 1 to 3 times a day. In the past, I have used 1/2 teaspoon twice a day. This time since my symptoms were so severe, I decided to go ahead and max dose it at 1 teaspoon 3 times a day. I did this for 3 full days and then decreased it to 1/2 teaspoon 3 times a day. Yesterday I did it for 1/2 teaspoon 2 a day and today I haven't even taken my dose yet. However, I'm not going nearly as frequently and things are improving. I'll probably stay at this 1/4 teaspoon 3 times a day for a few more days and then stop. If things go back, then I'll have to go see a doctor for testing. However I'm confident that things will stay great.
With all of this in mind, I decided it was time to go back to the regiment that I should have been on. Back to the LDN. 1mg last night. I can tell today. :( Headache, swollen hands and feeling hot (though I don't have a temp). I just got to push through this initial phase. Wish me luck and remember
Stay Lyme Aware.
Sunday, May 1, 2011
Lyme Awareness month
It's Lyme Disease Awareness month. Check out your local PBS station to see if they are playing Under Our Skin this month. It the Raleigh Durham area, it's being aired on May 17th at 8pm on UNC-TV (most people's Channel 4 I think). Check this documentary out. The first time I watched it, I got sad. The second time I watched it, I got mad. The third and fourth time I learned something new. Please DVR it so you can watch it time and time again.
I still have my Lyme Green ribbon up, though I'm in desperate need of a new one. This one has been out for a year! Share the Lyme Light by educating others on this disease.
I still have my Lyme Green ribbon up, though I'm in desperate need of a new one. This one has been out for a year! Share the Lyme Light by educating others on this disease.
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