possible for joint fluid to test negative but still have lyme???

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Regular Member

Date Joined Dec 2006
Total Posts : 79
   Posted 8/19/2009 7:00 AM (GMT -7)   
Hi everyone,
My sister has been sick for 15 years.... she got bit by a tick and developed a rash but never thought anything of it....  She currently now has brain lesions, neck problems, weird skin stuff rash things, developed ulcerated colitis and put her in hosp giving her lev and flagyl... after that episode, her knees became very painful and developed fluid on them.... shes been dealing with that for 6 months... (doc said was reaction to lev) She begged her primary to check for lyme, he did with the elisa and it came back negative... he told her they dont do western blot if elisa is negative....  She finally had fluid taken off her knees and checked for lyme, that was also negative but her wbc count is high in the fluid...  She is so depressed, and doesnt know what to do... they are now sending her to rhuemmy at the end of the month... there is a lyme clinic in RI, but need a doctor referal to get in and primary care says she doesnt have it, so they wont refer her....  My question is can you have lyme in joint fluid and test still come out neg????  Thanks....

Forum Moderator

Date Joined May 2007
Total Posts : 36051
   Posted 8/19/2009 2:32 PM (GMT -7)   
Hi 'Jo'!!
I'm really happy for you that you were 'found' this site!! You will find tons of help from people who greatly desire to help & share info!! Not to mention the friendships that are formed here!!!

As far as Lyme being in joints, muscles, and anything else that it chooses to destroy - it can be found in MANY different places.

Personally, I have Lyme arthritis (along with many, many other issues) & my current doc has no clue as to what to do to give me any relief.

I have read that LD as an amazing ability to hide itself from ANY tx that a person may be trying to use.

Unfortunately, I even ended up with a brain infection - fun fun!!!

Also very unfortunate is that what you wrote about your sis - it sounds pretty much like LD - & she could already be considered 'chronic' by now. =( =(

I do believe that most of the answers that you & your sis are needing can be found right here on HW!!

Wishing you & your sis health & peace ~
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).

Regular Member

Date Joined Apr 2009
Total Posts : 114
   Posted 8/19/2009 2:58 PM (GMT -7)   
Hi and Welcome,
Sorry to hear about your sister. From what I have read, testing fluid for BB is unreliable, whether it be joint fluid or from a spinal tap. So they would not draw a Western Blot for her? She really needs to have the appropriate labs done, at least to rule it out. Maybe the Rheumatologist can refer her to the Lyme Clinic. Or I personally would call the clinic back and state the facts. She has a history of tick bites and developed a rash and was not treated. And that her health continues to decline. Maybe they will have a change of heart. If not, we need to see if we can find her another LLMD near you.

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 8/20/2009 12:51 AM (GMT -7)   

I'm so sorry about your sister. How sad is it that they won't give her a referal. I also had trouble with my primary and had to push him to do it. I agree that maybe the rheumy doctor might give her a referal. It can't hurt to ask.

If you ever need an LLMD, please let me know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

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