Finally found a reason for DDs headache

[mdmom]

Thank you all for the ideas you have shared with me regarding my daughter's headache. Just to review, she developed an unrelenting headache on 11/16/13 and up until last week no doctor has been able to find the reason.

 

Her pain spiked last week and she was admitted to the hospital. Some smart pediatrician thought to look in her eyes and saw optic nerve involvement.

 

Opthamologist confirmed papilledema (swelling of optic nerves), MRI (2nd one this month) showed nothing. So they did a lumbar puncture and she had an opening CSF pressure of 48cm. Highest pressure the docs have ever seen in someone her age and size. She is 14. Newest dx is Idiopathic Intracranial Hypertension (IIH). They are hoping to manage it with meds, as it can be a chronic condition but surgical intervention may be needed if the headache and vision implications can't be managed with meds. We now have a pediatric neurologist and a pediatric neuro-opthamologist on her case. After 3 years of treating co-infections and getting a lot of criticism for the LLMDs protocols from mainstream docs including the new docs on her case, they all are suspecting Lyme caused this. Is that irony or what?

 

Now the plot thickens....she has an active Brucella infection confirmed by 3 blood tests in the last 3 weeks. She also has a staph infection confirmed by 2 blood cultures. I also found a sphenoid sinus culture lab result from Nov. 2013 that showed staph in her sphenoid sinus, which the ENT considers normal. Her primary care doc, the neurologist, neuro-opthamolgist and LLMD all agree that she needs to be treated for the Brucella. But no surprise, no doctor would touch the infection but the LLMD. While all of the 3 mainstream docs twiddled their thumbs this past week and waited for someone to treat her infection, my LLMD already had ordered the IV meds to treat it and had them delivered to my house. This is the very same scenario that made me leave the mainstream medical world and go off the beaten path to our LLMD. So many mainstream docs will pass the buck.

 

The staph she has in her blood is coagulase negative staphylococcus and it's the same bacteria that was found in the sinuses. According to dr. Shoemaker, this is MARConS.

 

She is being treated now with IV Vancomycin for Brucella and staph. And now we wait for the idiot mainstream doctors now involved to try and figure out the reason for the IIH. LLMD thinks it is caused by the Brucella (many medical articles have been written about this connection) but I wonder if the staph in her sinuses could have leaked into her bloodstream and/or CSF and caused the intracranial hypertension.

 

Does any of this make sense to anyone out there? I would love your opinions.

[PIK]

How did she get Brucellosis? Don't you get that from infected pork and milk? I thought I had it but I used to live in Greece where I imagine it would be more common Apparently it's very common in some countries.

[PowPow]

Wondering same thing.

[rowingmom]

Good for you for finding this mdmom. There seem to be so many bacteria capable of causing encephalitis in people with compromised immune systems. Who thought to test for this? Not the mainstream docs, I would guess.

 

Brucellosis can apparently be tick-borne, which means it is probably carried by other arthropods as well.

 

http://www.drsusanmarra.com/services/brucellosis

 

Symptoms of Brucellosis include: fever, night sweats with a strange odor, chills, weakness, malaise, insomnia, anorexia, headache, joint pain, constipation, nervousness, depression and impotence. Many organ systems can be affected by Brucella infection including the: brain (encephalitis), heart (endocarditis), joints (arthritis), testes (orchitis), and prostate gland (prostatitis).

[Hopeny]

OMG just saying so sorry this is happening, was DD on Doxy? I know that can cause + Intracranial pressure. I am sorry I have no advice for you just want to tell you I'm with you

[mdmom]

Thanks everyone for your kind words.

 

The doctors said that Doxy could have caused it and yes, she was on Doxy for Brucella but only had been taking it for 2 days when the headache pain spiked last week. My theory is that something else caused the IIH (e.g. infection) because her headache started in November. But the Doxy tipped the bucket and made it worse.

 

As far as the Brucella goes, LLMD feels like we should be looking in our history for the answer. When I was tested for tick-borne illnesses 3 years ago (2 months after we started the Lyme & Co journey with our children), I tested positive for Brucella. The health department even called me when my positive result was reported to them. We believe that DH gave it to me since he grew up on a dairy farm and was raised on raw milk. Then I transmitted it to DD in utero. CDC lists sexual, in utero and breastmilk as possible transmissions. It's also possible that DD was recently infected. We live in the woods and we often have red foxes running through the yard. Our dog often rolls in their feces and DD always insists on cleaning her when this happens. And how can I argue with a teenager that wants to be helpful? Well, lesson learned...I will no longer let her clean the dog when she does this. Of course, she cold have also gotten from a tick.

 

Who thought to test for Brucella? Our smart LLMD often runs a Febrile panel on all of us, which includes Brucella.

Edited February 15, 2014 by mdmom