could it be lyme

[Christina1978]

I have been pretty sick for almost two years and have been diagnosed with fibromyalsia. I have been tested for lyme but not the western blot, it was negative. I have had tick bites. I have all the symtoms of lyme I guess my question is could it be possible that I had it for this long and it not come up in the test which was not the western blot. I have the kit to take it but want to know if it is at all possilbe and are not gonna be wasting money. My symtoms 2 are very severe.
thank you and help is appreciated.

[patsy10]

Christina.  I think I posted to you on another thread.  It's not a waste of time or money but keep in mind you can still have lyme even if the test is negative.  The best thing to do is see a lyme-literate doctor.  You can do some research at lymenet dot org.  Some of the sickest people test negative because the immune system is too weak from the lyme to form antibodies.

[SOONERMOM]

My first test was a screening test and it was negative.   I was being worked  up for MS, so I just told myself "lyme was one more thing to cross off my list".  When my husband began having some similar symptoms,  I got tested through IgeneX with the western blot and it came back CDC positive for lyme.  I have now started on antibiotics and have seen improvement in every area. It was definitely the best $200 I have ever spent!

Patsy is right about people with lyme that have been sick a long time, they can have the test come back negative.  There is a forum on the website that she referenced above that helps you find a Lyme-literate doctor in your area.  I know how it is to be spending all your extra time and money towards medical testing, and doctors.  I just wish I would have known sooner that it was lyme and it would have really saved me heartache and money in the end.

Best wishes,

Stacey

[winfree]

please read my comment to nymom815. Lyme is NOT diagnosis to be based on tests; lyme should be diagnosed on your clinical symptoms.
Check websites I mentioned as I think one has dr. referral. I know of lyme literate dr.s in WA. I'm in AK. You may have to try alternative med/complimentary med (mine also does conventional); from my experience they get the more difficult patients to diagnose and treat - like fibromyalgia and CFIDS, and do not dismiss your concerns.

[jodibs]

Hi, it sounds as if you very well may have lyme. I have been battling with Lyme for over 8 years and just found out in February 2008. I was first told same as you that I had fibromyalgia. It really drives me crazy that lazy doctors use this as a diagnosis when can not figure out what you have. My best advice that I can give is just become your own advocate and if you really feel strongly about it being lyme keep fighting. I became my own advocate and did tons of studying and watched tons of documentaries and just became as educated as possible. I ended up in the hospital for 1 month and almost didn't make it through a very standard gallbladder removal surgury.  Doctors started to tell me for months that it was in my head and I kept fighting. All my blood tests came back negative becuase I basically had no immune system. Finally they did a spinal tap and the test came back for 6 different strands of lyme.  They immediatley admitted me into the hospital and put in an IV PICC line. The Lyme had gotten into my brain and my CNS was totally inflammed and that what was causing all the neurological problems. It was to the point that I couldn't even sit up straight. The hospital stay was horrible and the six weeks of IV and in home nurse care was not fun but I am on the road to recovery. I have permanant heart damage and have a million doctors appointments per week for my autoimmune disease, severe arthritis, heart problems. The good thing is I have an answer and I was right. I followed my gut and I saved my own life. You need to follow your heart and get moving. My doctors believe that it is going to take over a year to recover and I may have permanate damage in some areas. If the doctors would have listened to me 2 years ago this would not be the case.  Please follow your heart and never give up. I will pray for you. Just remember those doctors don' t know half as much as you think. It is really scary out there. I went to over 110 doctors last year from Universtities to Drs that have books out and every single one of them were huge disappointments. Find someone that believes in lyme and never give up. Good luck.