I am only 25 years old and newly married, but have been fighting Lyme since 1997. In the past, I went temporarily blind from it. More recently, the pain in my right hip and knee is to the point where I'm considering a cane, but I don't even know if that will help. I'm also losing my hearing on that side. I'm so very frustrated with the fact that I was able to get a 4.0, and consider myself intelligent, but I will have blanks where I think of a simple word. Like, "bed"...I'll know that it starts with a B and that it's the thing I sleep on at night (the definition), but someone else will have to provide the word for me.
The other day I left a light on in the house and remember going back inside to turn it off, but the next thing I know, I'm standing with my hand on the door ready to go back out and cannot remember if I went upstairs and shut off the light.
I'm having trouble with finding a good doctor/getting support about the one I went to...please help someone! I really feel lost, isolated, and helpless to control this deterioration.
I hear you and I'm sorry you are suffering with this. Sounds like you need a good LLMD as soon as possible. Look in support groups on this site. Write to the ones in your area and ask for help! I had to wait sis weeks to see mine but it was well worth it.
I would think getting yourself tested through IgeneX lab would be the next step. My guess is you need to be checked for co-infections as well.
Don't be too hard on yourself about the symptoms you're having. I can't tell you how many times a day I start in a direction only to find I have no idea what I had in mind to do. All this goes with the territory.
I have lyme as well as Babeosis and erlichia. It just exacerbates the lyme symptoms. It's going to take time, but once you find a Lyme literate doctor you feel comfortable with you'll be on your way.
Let us know how you are doing and best to you on this journey!
Ann
You don't say whether you are in treatment currently. The recent study at Columbia has proven that repeated treatment gives improvements in symptoms like you are describing.
Intensive Treatment helps People With Chronic Lyme Disease
In addition to contacting support groups, you can post in the Seeking a Doctor section of this board to receive the names of recommended doctors in your area.
The links will also give you some info about Lyme. The more you know, the better you can demand proper treatment.
How to use the Lymenet Search
Reasons for False Negative Lyme Disease Blood Test Results
Dr. Joseph J. Burrascano's Treatment Guidelines
ILADS Treatment Guidelines
Camp A and Camp B
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Sonoma County Lyme Support
[email protected]
So so sorry to know you are suffering so much right now. What you'd described about your condition I had experienced the very same problems before my current treatments. You gave me a flashback and my heart goes out to you.
LymeNet is a great place to get your info and receiving the understanding about your conditions.
Wishing you the best of luck and keep us posted.
Mimi
I just saw a Dr. S in PA, but heard some mixed things about him. I posted about him, but got no responses.
I've had a bad bout before...I was on IV, but then good for three years until now. I'll travel to see a good DR. ...I don't care how far.
Thank you for your support. It's really nice to know that I'm not alone in this.
Good luck.
Here's some information for you. I hope you will take the time to read it.
Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html
Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html
Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
More info: http://www.ilads.org/
Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html
There's a wonderful LLMD in Missouri that has brought me back to health. Here are some links to his website, etc.
http://flash.lymenet.org/ubb/Forum3/HTML/004140.html http://www.drcharlescrist.com
Feel free to email me anytime! 
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oops!
Lymetutu
i just had one of the happiest days of my life . aftr 18 years of being undiagnosed and near death's door, i was referred to a doctor who i saw on thursday. he knew every symptom i had and related them to what the diseases are actuaaly doing to my body. he was so compassionate! he absolutely kn0ws what he is doing. he told me to get ready for battle. i would be going to war.
i bought a cane and a scooter - whatever aid you need to conserve your energy for the fight.
let me know if you want more info.
warm regards
paisley
Yes, many of us have been where you are. And many of us, myself included, have had Lyme 10 years or longer.
Since you're willing to travel, I emailed you the info on my LLMD here in NJ - which I think is closer than Philly. She saved me - I was a mess. And now I have my life back and am off antibiotics after 8 months. Not too bad, considering I went untreated for 10 years.
Keep reading, and follow those links that riversinger sent you.
You're not alone in this.
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Julie G.
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lymeinhell
I'm a lot concerned about your situation. Please e-mail me at [email protected] and I'll give you my Lyme Doc's name in CT.
My whole family has been treated by him and I think he's intelligent, kind and relentless.
Look forward to hearing from you.
Susan
The problems you are having can be helped.
Please listen to the advise given to you here.
Let us know how we can help... ok?
I hope you feel better soon!
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If you get the choice to sit it out or dance...
