HealingWell
Search Close Search
☰

no diagnosis

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/30/2011 4:33 AM (GMT 0)
Does lyme disease stay with you your whole life?  Can it be diagnosed 20 or so years later?  I have so many symptoms and the doctors have no idea what is wrong with me thus far.  I was bit by a dear tick years ago and got very sick at the time.  Back then I was blood tested for it and all came back negative and that was the last I heard and dealt with it. I was a kid then and now in my early-mid 30's.  Help please
Posted 8/30/2011 4:52 AM (GMT 0)
thank you :)
Posted 8/30/2011 12:18 PM (GMT 0)
Welcome to the forum. So sorry to hear you are sick. Lyme is just a baffling and unknown disease. For some reasons, it may take years to present itself. When I first became sick, someone said to me add at least 5 years to how long you think you've had it.

I would suggest that you read "New to Forum - Please Read." It gives so much useful information and links about lyme.

I would also recommend that you research, research, research. With a disease like lyme, you must be your own medical advocate. It's not an easy battle but you can get well. As with any chronic illness, it can remain with you your whole life but you can also get it under control. We can only go forward, so focus on that. I say that from experience because for so long I focused on trying to accept having the disease rather than fighting it. Positive thinking has really helped me.

A few questions - have you contacted an LLMD? Have you obtained a copy of all lab reports that you say were negative? The reason I ask is I was also told my tests were negative but in fact significant banding showed up that in fact indicate lyme. I hope we can be of some help and reassurance to you.
Posted 8/30/2011 11:54 PM (GMT 0)
Hi Springsjean,
Thank you for the advice. I just saw a rheumotologist two days ago and I have been seeing my hemetologist, but need to look outside the box so to say. I agree, I am learning that I have to be my own advocate. They are in the process of looking into lupus, ms, and other various autoimmune diseases, most of which I have never heard of. A friend of mine asked me if I ever had a dear tick, I replied yes and why- she seemed pretty informative because her son had it and was treated immediately, she peeked my curiousity and I have begun my research and questioning. I have to say, lyme above everything else that I have been investigating appears almost dead on. However, i know that I could be completely wrong. I have been suffering from horrible body aches and extreme fatigue, I never feel rested or refreshed even when I get what should be considered ample sleep. I have been going numb in my arms and hands and loosing circulation with color change. I have had migraines for years. This past winter I had optic neuritis in one eye, brain mri showed no ms lesions. May be completely unrelated but I have also had seisurzes with no found cause, not recently though. I have come and go horrid kidney and back pain. My legs are also in constant pain. Most days I just want to curl in a ball and cry. It's hard because I have a blood disorder called anticardiolipin/antiphospholipid syndrome with a history of dvt (blood clots). My hemotologist always jumps automatically to rule out clots.

I am now 34 years old, when I was approximately 13 or 14 I was bit by a dear tick, I was told that is was confirmed dear tick because doctor sent it out. I was very sick with flu like symptoms and fever, I had missed about 2 full weeks of school. I recently confirmed with my mother that I did in fact have a bullseye marking back then. She was convinced I had lyme then but the pedatrician told her no and that blood work was negative. She left it at that and I eventually got better. Now it is approximatley 20 years later and I am desperate to find out what is wrong with me, I am starting to think I am crazy and have been going through depression over it.

Any more advice or feeedback? Also, you noted in my other post about emailing you, where can i get your email from to get LLMD suggestions?
Posted 8/31/2011 12:10 AM (GMT 0)
the more I read the more I am shocked! I just read some posts about digestion and nutrion and I can not believe it. I never would have thought those problems of mine could be related to everything else going on. I have had unexplained and undiagnosed bad digestion and bathrooming for years. I have had every gastro test known to man and was finally told irrital bowel and acid reflux and that my body just doesnt break down certain foods properly. I have always had poor appetitae and eating habbits because always bloated and undigested feeling and costipation that randomly becomes the complete opposite. People close to me say I have an eating disorder because of lack of desire to eat and lack of doing so. I have lost about 12 lbs in a two month period and was on the underweight side to begin with, I chalked it up to stress and over working. I have recently taken diary out of my diet and it has made a tremendous difference but isn't the cure, still not right.
Posted 8/31/2011 12:54 AM (GMT 0)
Yes it is just so sad the amount of people that are sick and being treated for other things that are probably lyme. I even wonder if your history of blood clots is related as lyme causes thick blood. I am not a doctor but please continue to research because most doctors, and I do not say this defamatory, most doctors are not aware of what lyme can do to the body. I also lost weight when I first starting showing signs, but then put on that plus 40 more. Ugh. I believe I had it for 10+ years now although only realized something was very wrong about 5 years ago. My husband has been showing signs for about a year so when he ended up in the hospital in June and I tried to get doctors to listen to me, not only was I disregarded, but I was ridiculed over and over and over again. It is very very scary. I wrack my brain everyday to think of ways I can alert the public and medical profession about this disease. Unless you have experienced it, there is just no way to explain it. Unfortunately, my poor husband has found out the hard way what I have felt like the past few years. I just don't understand why others have to suffer. You can find my email if you click on my name. It should be in my profile.
Posted 8/31/2011 12:57 AM (GMT 0)
Another word of advice. There are alot of lyme books out there which suggest treatments, etc. but if you really want to understand the controversy and medical side of lyme, read Cure Unknown. I don't have any affiliation with the book but it gives an explanation on why the diagnosis and getting proper treatment is so difficult.
Posted 8/31/2011 2:26 AM (GMT 0)
I applaud your efforts and wish you and your husband luck and health. Funny you mention that about my blood because the rheumotologist as well as my aunt (lol) are questioning if I was misdiagnosed with my blood disorder many years ago. I have been being treated for that within coumadin medication since 1998. At this point, I am second guessing everything and every doctor i have been to. I don't know. Just stressed and exhausted. Going to try to keep on keepin' on until I get some true answers.
Posted 8/31/2011 10:31 AM (GMT 0)
If you had a tick bite followed soon after by a bull's eye rash and flu-like symptoms, you had Lyme at that time (this is the "classic" presentation that most MD's should be able to recognize, though many don't).

Because no treatment was given at that time, it is possible that Lyme is a potential cause for most or all of your symptoms, including the seizures and the APS (antiphospholipid/anticardiolipid antibody syndrome).

I agree with the others that it would be a good idea to be evaluated by an LLMD.

Take care,
Posted 8/31/2011 1:15 PM (GMT 0)
Thanks. Keep on keepin' on should the lyme motto. That and I can't get no satisfaction. Please keep us informed. We are determined to get you relief.
Posted 8/31/2011 3:50 PM (GMT 0)
Undiagnosed,

You came to a good place for information!  Like you, I was bitten as a kid and didn't get diagnosed until age 29.  Had all sorts of seemingly unrelated symptoms which make perfect sense once you understand Lyme.  I finally started treatment at age 30.

 

✚ New Topic ✚ Reply