I have chronic Lyme.There is no doubt about it. All my problems started after the bullseye and a positive test. So, I worry about my children.
My 3 year old woke up with swollen knees and limping last Tuesday.
My wife brought her to her pediatrician and I had her demand antibiotics and a Western Blot.
I then brought her to my doctor, who treats me for Lyme. My doctor told me to keep her on antibiotics and bring her back in 2 weeks if she wasn't better, with the Western Blot.
My doctor treats Lyme, but not aggressively as I'd like. Maybe I'll try to get her to DR J if this doesn't clear up.
My wife's doctor called and told her that she didn't have Lyme. My wife of course, in her ignorance, told me, "See, I told you," and set up an appointment for a rheumatologist, which scares me to death.
It seems my daughter's ANA test came back positive.
I went to the office to get a copy of the WB, I wanted to know what bands came up, and to bring it to my doctor.
Well they didn't even do a Western Blot. One was ordered, but the lab didn't do it, because the Eliza was negative.
Well I pitched a fit and they did the test on week old blood, which may be useless, but I'll bring her to my doctor and get the Igenex.
I have an appointment for 9/2 for my doctor. I figure I'll keep my daughter on the amoxicillin until then, and then he can do the tests. I have told my wife not to let the rheumatologist give her any medications, until after I ask my doctor, but my wife is hard-headed and I'm hoping she listens.
Now, it might not be Lyme, but it might be. How important is this ANA test? It looks rather vague to me. Am I doing the right thing?
My daughter is still limping on swollen knees.
Posted by Need Lots of Help (Member # 18603) on :
This is tough, because if your wife doesn't know lyme by now, through you, I am not sure what will get her to understand. My husband knows lyme through me, and differs all of my daughters treatment to me or the lyme doctor I chose.
Posted by TF (Member # 14183) on :
Many people get a positive test result on the Anti-nuclear Antibody (ANA) test and they do not have an auto-immune disease. I tested positive probably 25 years ago when I was sick with something and the doctors could not figure out what it was.
In fact, many people with lyme test positive on this test. So, the ANA alone is not enough to decide she has rheumatoid arthritis or any other disease.
But, a rheumatologist might say she has it based on her swollen knees. In fact, when lyme was first discovered, it was because a woman reported to the Health Dept. in Old Lyme, Connecticut that there were a huge number of pediatric arthritis cases on her block (kids with swollen knees), and this could not be coincidence.
So, lyme imitates arthritis and can be mistaken for arthritis by an uneducated doctor.
Posted by rosiegeorge (Member # 27518) on :
When I was 5 years old I started having knee pains, pediatrician said "growing pains" when pains kept worsening by age 11 rheumo said juvenile arthritis, only positive test was a one time ANA.
Now, 30 years later, looks like I have had chronic lyme all these years later. Always been treated by Rhuemo's who diagnosed me from Arthritis to fibromyaglia to Chronic Fatigue, everything else but Lyme.
Make sure she is also evaluated by a LLMD.
Posted by sixgoofykids (Member # 11141) on :
Maybe you can show your wife something about the early history of Lyme Disease. It was named after an outbreak in Lyme, CT where a large number of children had "juvenile arthritis" that was really Lyme.
Posted by lululymemom (Member # 26405) on :
Yes, positive ANA here with speckled titre.. 1:160.. all follow up tests have been negative. I have been told it is a result of Lyme.
Posted by tick battler (Member # 21113) on :
My 6 year old son and husband both had positive ANA's but we were told it is from lyme. They both also have positive lyme tests and are responding to lyme treatment.
Sounds very much like lyme to me. Has your wife seen Under our Skin? Has she read "Cure Unknown" or any other lyme book? Might be helpful for her.
tickbattler
Posted by Pinelady (Member # 18524) on :
She may have a clinical diagnosis and you may not need a WB to treat---I would not trust a neg. if they did use old blood.
But I would want to rule out other things like Mono, etc. Mono and Lyme is not good.
Posted by seibertneurolyme (Member # 6416) on :
Not to scare you, but maybe reading this patients story would shock your wife into believing in the possibility of lyme and tickborne coinfecitons.
the good news is that kids usually respond quicker and recover better than adults.
Bea Seibert
Posted by John S (Member # 19756) on :
Thanks for the advice. I hope, that if she keeps taking the antibiotics it will go away.
Posted by renny1985 (Member # 25222) on :
I also have a positive ANA 1:160 speckled. I was told by rheums for years it was indicative of some non specific connective tissue disease. Only, when they gave me mass doses of immunosuppresants, the lyme (that we didnt know about) nearly killed me! Be careful with that. Good luck and keep fighting for your daughter.