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Hi! I am new here! Chronic Lyme Disease since 2004!

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Posted 2/10/2011 7:30 PM (GMT 0)
Hi!
I am brand new here. I have been struggling with chronic lyme disease and co-infections since 2004. I am SO happy to have found an informative forum!
Because I am now homebound, I just recently started a blog about my chronic lyme disease. I hope that it will help others suffering from this debilitating disease. We are NOT alone...and we are stronger working on bringing about awareness together!
I am looking forward to gaining more knowledge by reading all of your posts.
Please feel free to read and subscribe to my blog at www.myblindspotjourney.wordpress.com
Thank you! Good luck to all of you!
deb :-)

Post Edited By Moderator (Traveler) : 2/10/2011 3:18:53 PM (GMT-7)

Posted 2/10/2011 10:28 PM (GMT 0)
Hi Deb!!
First of all I wanted to let you know that I edited your post so that the link to your blog is now a hyper-link, so that other can just click on it & go.

Welcome to our forum!!! I am so sorry to hear that you have been engaged in this battle for so long - but...you are in good company!!! I'm sure you will find us to be a caring, helpful and understanding group!!

Even though you are not exactly new to Lyme, it would still be a good idea for you to read through the thread at the top of the forum titled, "New to Lyme?...Start Here!" as it is packed full of really helpful information and some really great links!!

I look forward to getting to know you better through your posts!!

Should you have any questions about this site, please feel free to email me. I may have to go a-lookin', but I'm sure I can find any answers you may need!

Again- welcome to our little spot!!
Posted 2/10/2011 10:35 PM (GMT 0)
Thank you SO very much!
I will certainly take the time to learn my way around here!
Today, however, I am fighting a lyme migraine.... so I must leave the learning for another day. Perhaps tomorrow!
I am excited to be here! Thank you for the warm welcome!
Posted 2/10/2011 11:07 PM (GMT 0)
OH Deb!!
I am sooo sorry to hear that you are dealing with a migraine!! I get those as well, but not all that often fortunately!!
Please do take the time you need, we just like to welcome our new comers!!
Posted 2/10/2011 11:50 PM (GMT 0)
Welcome Deb and hope you feel better!  We love new members but hate to hear they are sick.  Hope we can help each other, if nothing else but to be there for each other.  I've read your blog which is so unbelieveable.  You definitely have a gift for writing!  I'm sure I'll be "talking" to ya in the future.  I'm addicted to this forum.  LOL. 
Posted 2/11/2011 12:11 AM (GMT 0)
Thank you! I seem to be on much of the treatment as yours. I have not yet addressed that in my blog, but soon will. I was going to today, but darn lyme migraine got the best of me and took most of my cognitive abilities away for the day.... maybe later tonight if I can not sleep....maybe tomorrow.
Something that has been keeping me awake at nights is this: Do any of you with chronic lyme disease and co-infections, think we will EVER be free of this disease? I have read so many different views and opinions. I tried to remain positive, but somedays the negatives win.....
deb rolleyes
Posted 2/11/2011 12:12 AM (GMT 0)
I LOVE this forum already! Thank you ALL for the wonderful warm felt welcomes!
Posted 2/11/2011 12:26 AM (GMT 0)
Hello Deb,

I just read your blog. It's amazing. Reading it brought me a sense of comfort. Especially, since I nearly burned my apartment down yesterday for the third time. In spite of everything I've learned on this forum I still seem to need reassurance that I am not crazy. I was recently diagnosed with Fybromyalgia. Like you, I received some treatment for Lyme and my doctor says I'm cured. My symptoms seem to be getting worse. Especially my problems with memory and words. Your story is so similar to mine and to so many others I have read.

Thanks so much for taking the time to write about your experience................................Willie
Posted 2/11/2011 12:34 AM (GMT 0)
And a welcome from me as well. You asked if any of us with chronic lyme and co-infections think we will ever be free of this disease.... (As an aside, I have been sick for 40 years, so obviously finding answers and cures aren't my strong points...although I was just officially diagnosed with lyme in August).... Ok, back to topic.... I read an interesting term while looking at the Marshall Protocol the other day, and it was "Pea Soup Toxicology". So, yes....I believe we can be free of this disease when we find out just what is in our "Pea Soup" and address it. Since none of us has the same recipe, it makes it a very, very personal journey. I told my LLMD-in-training today that the best lyme patients are ones who seek to find answers themselves and do not rely solely on their doctors to tell them what to do. We're all a special bunch, and I look forward to reading your blog. I am exhausted by my trip to the doctor today and just stopped by here for a minute. Again....welcome.....
Posted 2/11/2011 12:55 AM (GMT 0)
To tell you the truth, no. I think it will be a lifelong thing, but now that I am feeling better, I can say that there are worse things. I go to work each day, enjoy life again and don't feel as bad as I did. That being said, I am still on antibiotics. I know I cannot stay on them forever and I worry about what will happen when I go off. I am hopeful that they are making a dent in this darn bacteria war but who knows. I have to say I research, research, research every single day since being diagnosed (and before). I am so amazed at what I have learned and in doing so, am also shocked by how willing my doctor is to listen and learn with me. I am determined to somehow get my voice heard and make a change in the lyme protocol in my lifetime, even if it takes me the next 50 years!
Posted 2/11/2011 12:59 AM (GMT 0)
You are ALL so FABULOUS! Thank you, Thank you, Thank you!

Willie, I look forward to sharing more of my journey with you. We must all keep in mind WE ARE NOT ALONE as well battle this disease!

Mamyou,
I love your quote, " The best lyme patients are ones who seek to find answers themselves and do not rely solely on their doctors to tell them what to do!"
Posted 2/11/2011 7:29 PM (GMT 0)
Hi Deb,

I was reading your blog but got lost..
what happened to the doctor in Wisconson ?


did you get cured? what was the treatment?

so you are reinfected now?? is that what going on.
notice you had all these picture of yourself in the tall grass and with your pets?


have you ever been symptom free?
Posted 2/11/2011 7:44 PM (GMT 0)
I have just started my blog. There is a lot more I need to add to it.
I was first treated in 2004 through the CDC. Big Mistake- I know that now. They cut off my treatment at the 6 weeks mark even though I continued to have serious health issues and lyme symptoms. They were, what they said, "Following the guidelines set before them."
It took me 6 years and many, many, many Lyme Illiterate doctors until I found the doctor in Wisconsin. I started treatment for what is now chronic lyme disease and co-infections in August 2010. My blog post yesterday was about him. I am hoping today to continue on with the treatment we discussed and what I am on now.
No, I am not cured. I was told from the start that this will be a long difficult process. Truthfully, I am not sure I will ever be 'cured' of lyme disease.
Yes... I have a dog. When I am feeling up to it we hike, etc. I have always loved the outdoors and nature. Lyme has taken a lot away from me, but I won't let it take my love of nature away. That is why it is so vitally important that we all become educated about this disease as best we can. Some may think of me as being 'stupid' for continuing to hike through the tall grasses, etc. For me, it is what brings me happiness and joy. I can not stop living...and I won't give LYME the power to take that away from me.
If you go back to my blog and start at the beginning, it might make more sense to you. I have several posts on there from beginning to present day.
No- I have never been symptom free.
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