posted
To explain my request first before I make it, I was diagnosed with Lyme in 1995, so about 16 years. Somehow, and I don't know how to explain it because I was 7, I fell through the cracks and treatment was stopped - in 1995. I've been reading your posts in all of the forums and am frankly amazed. I am reading things tagged as symptoms that I have dealt with ever since I can remember. And frankly, I thought that everybody dealt with them. It was only a week ago that I found out I was wrong. I would like to know some of the varying symptoms you have so that I know what is not normal for most people. I want to find out which of my everyday charasteristics shouldn't be everyday. I have my first Lyme-related Dr's appt in 16 years on Wednesday, but until then, what's the Lyme, and what's really me? Also, can you post how long you've had Lyme so I can have some sort of timeline to go by. Thank you. Posts: 8 | From Illinois | Registered: Jun 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome! SOOOOOOOOOO nice to have you here!
And better yet, that you want to learn! Yippee!!!!!
For a good symptom list that covers the basics, Dr. B has one.
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Hello there! I'm not exactly sure how long I've had lyme but my best guess is about 6 years. That is when I started having weird symptoms.
Went to a cardiologist and had a workup for palpitations, chest pain and dizziness. All normal.
Went to a GI doc for various GI complaints....abdominal pain after eating, feeling nauseous for no reason, getting full very quickly after the start of a meal, etc. Had a workup...everything normal.
I had also been to my PCP on numerous occasions for various symptoms which include the above. Some of my other symptoms were anxiety/panic attacks...burning sensations and numbness/tingling in various parts of my body...feeling off balance...pain, especially in my lower back and neck...episodes of hypoglycemia and fatigue and weakness.
Around February, I started having more neuro symptoms. I was choking on my food and having trouble swallowing....had expressive aphagia and had a difficult time holding a conversation. I started with ADHD type symptoms as well. Then fatigue also got really bad.
Because of the neuro complaints and overwhelming fatigue, my PCP decided to send a lyme test on me. Of course, he proceeded to tell me that I didn't have lyme though. With the help of the wonderful people on this board and getting in to see an LLMD, I am now on my way to restored health.
Somewhere on this board there is a list of all the symptoms of lyme. You could print it out and maybe put a check mark next to the symptoms you are experiencing and let the doc help you sort through that list. Good luck!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi:
Well without watching Under Our Skin or reading A Cure Unknown you might find watching some video's on the controversy.
I do this only to try and help educate how this happened. You are not alone in the sense others have fallen through the cracks for years as well until the symptoms become too great.
If you watch this video you can see some of the miss diagnosis.
I hope you become well soon but in my discussions with Dr. J I believe his average patient is 3 years (some as short as 3 months) and some like the young girl Marina (in Under our Skin) was 7 years.
Our daughter just started month 13.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
To start learning the link below which is on this site's homepage will help.
posted
MissMolly, I relate to your story. I first had my positive lyme blood test in 1994 -- I took 3 weeks of antibiotics and was declared well. We had no reason to think otherwise. I felt better after taking the antibiotics, so swell.
A few months later I started not feeling well again and was tested again and the test came back positive again. In all I tested positive for lyme, took a few weeks of antibiotics, and was declared well 3 times. I remember how amazed we all were that I had gotten lyme 3 times! Wow...how did I keep getting bitten?
There was never any idea that this could be that I just wasn't treated correctly in the first place. When I now look back I realize that I think I had it a few years before I ever tested positive -- probably 1992 (age 11). That is when my unexplained symptoms began.
After that time I struggled with various symptoms on and off, most of the time. But, like you, I figured they were normal. Does everyone get tired? Doesn't everyone get headaches? Etc. I was functional, mostly.
A few years ago my symptoms worsened and I couldn't ignore them anymore. I was eventually diagnosed with lyme but didn't realize how serious it could be, and basically ignored it -- deciding I would just rest and relax more.
That was until last May (2010) when I had a stressful trip; I haven't been the same since. Housebound, need caregivers when my husband is away, using a walker, etc.
So, I certainly understand what it is to go through life thinking "this" is normal, and finding it isn't. I never ever connected my early lyme experience with the symptoms I had later in life. However, the fact is it was...and can become serious. I'm so glad you will be seeing a doctor soon.
Good luck!
Posts: 232 | From Oregon | Registered: May 2010
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