Chronic Headache and Mycoplasma

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Brianna's Mom
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/19/2008 9:12 AM (GMT -7)   
My 12 year old daughter has been sick since February.  It started with what seemed to be the flu which went away.  about a week later, she had a severe headache, sensitivity to light and difficulty walking.  Her neuro diagnosed her with acute cerebellar ataxia.  Her walking improved after a few weeks, but the headaches persisted.  She also has paranoia and feels like she is being watched.  Therefore, I am unable to leave her alone.  She has missed almost 3 months of school.  She was an honors student with many friends and her life has been turned upside-down. 
 
Morphine and toradal have been the only medicines which have given  her relief.  She has had two lumbar punctures, one CT, 2 MRI's and recently a colonoscopy and endoscopy for what appear to be the beginning of ulcers.  The first mri was normal but the 2nd showed evidence of lesions in the white front matter which indicate the possibility of a migaine, ADEM, Lyme's, among other conditions.  In the beginning stages of her illness, she had elevated titers to Lyme which were considered equivocal. The LP did not find any evidence of Lyme.  Her blood work is now with the California Encephalitis project where the test reflected elevated titers to mycoplasma.  We are awaiting a 2nd test to see if she has Igg titers to mycoplasma. 
 
THe GI doctor thought she had a H. pylori bacterial infection, but the biopsy turned out negative.  There are not many resources on the internet about mycoplasma, but I have read that it can cause gastrointenstinal problems.  If the GI suspected an infection, and it was not H. Pylori, can it be mycoplasma?  The GI doctor says it is doubtful, but what is the source of the infection in the first place? 
 
Brianna was on steroids at first which did not help her headache.  She is now on beta blockers which do not seem to be helping.  She also has joint pain, numbness in her fingers, fatigue, and is becoming more depressed each day.  Her doctors want to just experiment with different medications until we find out what works.  The worst symptom is her headache and she does not want to leave the house.
 
We are at our wit's end and want her better.  We are considering some alternative treatment such as hyperbaric oxygen therapy and acupuncture. 
 
I would appreciate any feedback and/or suggestions about her condition.  Thanks in advance!

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 5/19/2008 11:02 AM (GMT -7)   
Dear Brianna's Mom,
I really don't know much about what might be going on with your daughter. I can only offer my sympathy for all you are both going through. To have so much handed to her at such a young age is so unfair to you both. I encourage you to continue to research and learn all you can, become an involved and assertive advocate (which I know takes much energy, which you probably have little of) because health care is wonderful in many ways, but doesn't have all the answers.

I'm glad Gramps found you a link. Maybe someone else can add more information. I will keep you both in my thoughts.

PaLady

Brianna's Mom
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/19/2008 11:07 AM (GMT -7)   
Thanks Gramps and PA Lady, my emotions are exactly as you described I am so tired and disappointed that I have to fight so hard for answers. Before the mycolplasma infection (if that is what she has) she was discharged twice from the hospital for migraines. I knew in my heart it was not just a headache and it turns out there is something else going on.

I appreciate your feedback and look forward from hearing about any similar experiences from others and how they dealt with it.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/19/2008 11:30 AM (GMT -7)   
Mom,
With all you're going through, you'll need a good support system for yourself. I don't know how many friends and family you can lean on, but you might also consider a good therapist for yourself - not because there's anything wrong with you, but just to help you as you go through this journey with your daughter. Caregivers are at high risk of getting sick themselves because of all the stress, so do find and use whatever support you can.

PaLady

Brianna's Mom
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/19/2008 12:15 PM (GMT -7)   
Yes, I am in need for support. We are blessed with family and many friends who have helped us so much. My daughter is seeing a therapist tomorrow and I am looking into something for myself. Your reply confirms that I need to do something for myself as well.

Thanks!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/19/2008 12:19 PM (GMT -7)   
You're welcome. We're here for support to the extent we can give it, but it's not the same as hands on help, and an in-person ear.

You're doing all the right things.

PaLady

quahog
Veteran Member


Date Joined Sep 2005
Total Posts : 535
   Posted 5/19/2008 2:11 PM (GMT -7)   
Hi Brianna's Mom and welcome to the forum.

You mentioned Lyme disease so I'm wondering if you have seen or will be seeing a Lyme Literate Medical Doctor? Lyme is a difficult organism and most physicians either underestimate it or do not know enough about it. LLMD are trained in this area and generally know more about it than mainstream medical doctors.

I am under going treatment for Lyme and it has been a rough road. The longer one has it the longer it takes to treat it. I have had it since 1991.

One thing to note that most lab tests for Lyme are very unreliable and you could still have it even though the testing is negative or equivocal. It is mainly a clinical diagnosis which is why it is important to consult to a knowledgeable physician.

There is a wonderful forum on this site that deals with Lyme and the Co-infections which often accompany the Lyme bacteria which also known as Borrelia burgdorferi.

Mycoplasma is one of those co-infections.

Take care and hopefully you can get your Daughter feeling better

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 5/19/2008 3:23 PM (GMT -7)   
Hi Brianna's Mom. Welcome to the Forum.

I don't have information about the illness you mentioned, but I wanted to share something else with you. Where I live (and I think throughout the nation), as a part of any child's right to a free education, school districts are required to provide a visiting teacher for students who are homebound because of an illness or injury. I know your daughter doesn't feel well, but if someone could come to her (perhaps at a time after she's taken some pain medication so her head is a little better), maybe it would help with her depression. I am sure it seems overwhelming to you both to think of how much school work she has missed, but the school district needs to support her with that. Don't be afraid to ask the school district to make arrangements to help out. It should not cost you a single penny. They may need to meet with you to write a special educational plan (where I live, it is called a 504 plan, after the law that provides for it), but that can be revised or revoked after your daughter is healthy enough to attend school again.

I know that doesn't help you with the medical side of things, but I hope it helps somehow. I will pray that you can find a doctor who will help your daughter get well.

Ry

Brianna's Mom
New Member


Date Joined May 2008
Total Posts : 4
   Posted 5/19/2008 3:30 PM (GMT -7)   
Thanks Ryan D,

Brianna is in the home hopsital program at school and we have at teacher here almost every day. I had no idea that program existed and it is wonderful for her. Thanks for sharing!

Quahog, I have an appt with a doctor who is very familiar with Lyme in a couple of weeks who is writing a prescription for hyperbaric oxygen therapy. We will see if that works.

Thanks,

Tracy
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