Recurrent fever, joint pain, headache

Question

For a year now my 13 year old daughter has been having recurring fevers about every 2 weeks. Fever between 103 - 106 that lasts from 3 - 5 days. The episodes present with lower back pain, she develops severe headache, leg pain and joint pain and Severe fatigue. Between episodes she is fine. She was episode free for about 3 months but the episodes have returned. She has been tested for everything from lyme's disease to leukemia, strep, hepatitis, mono, cat scan, ultrasound, bladder, kidney infection, chest x rays. At times her white blood cell count is high and sediment in her urine but further tests do not provide diagnosis of bladder or kidney infection. We are at our wits end. She is miserable and in so much pain so often, we just do not know where to turn any more. Has anyone dealt with an illness with similar symptoms? Any advice?

Ricobord · Answer

Sounds like Lyme Disease or Q Fever.  Many people with Lyme Disease test negative.  Unfortunately most doctors think that a negative blood test excludes Lyme, which it doesn't. People test negative for a variety of reasons, like what strain of the bacteria they have, whether they've been sick more than a few months, and whether you've had any immune suppressing drugs or a coinfection along with Lyme that also suppresses the immune system.

The screening test is wrong up to half of the time.  The Western Blot is a better test, but the CDC surveillance criteria (statistical sampling) for the test somehow evolved into an absolute diagnostic tool, which it is not.  The best lab for finding it is IGeneX, which uses two strains of the bacteria instead of just one at other labs.  You can read on their website about the controversy in the medical field over test interpretation.

I was negative on the screening test and in a spinal fluid test, but positive on the IGeneX Western Blot.  However, since I am CDC negative, I don't think any regular doctor would have diagnosed me (I saw 12).  It took someone who knew Lyme well to diagnose me and treat me,

Find a Lyme Literate Medical Doctor in your area (LLMD) who is associated with ILADS and knows the disease well and can work her up thoroughly for it. If she does have Lyme, she will not get well without specific antibiotics.  High recurring fevers for a year are serious. Pay cash if you have to to get her to a Lyme doc.  Now that I know how severe Lyme can become, I would not hesitate to take my own daughter to one if other doctors couldn't find anything.

margypops · Answer

Yes many children and adults seem to have similar and on the childrens forums we see many similar posts.There have been virus's going around that are reocurring sometimes every few weeks . Allergy symptoms like coughs, scratchy throat, itchy eyes, sneezing a lot sinusitis..my opinion is that its environmental .Good luck