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10 year old DD has permanent headache *UPDATED P3 Mycoplasma
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amother
Coffee


 

Post Fri, Jun 17 2022, 9:01 am
invisiblecircus wrote:
How do you test for lyme? Strep, celiac and dairy intolerance have all been ruled out previously, not as part of the headache investigation. I don't think we tested for blood sugar, I'll ask about it but I would be surprised if that was the problem.
What do you mean by adrenals?
mainstream Lyme testing is notoriously inaccurate, the gold standard is IgEnex or galaxy , but even with those, a positive can rule lyme in but a negative will not rule it out. Dairy sensitivity can not be ruled out with testing either, you would need to fully eliminate for about a month to really see. Even if he tested negative for celiac (did you check the results yourself? Often drs will say it came back normal when in reality one of the markers was off, they will dismiss as insignificant but it really may be significant), he may still have non celiac gluten sensitivity, which is a real recognized medical phenomenon that we have no way to test for other than complete elimination. Adrenals means he may be having trouble regulating cortisol production, or balancing electrolytes etc, you need a 24 hr 4 pt saliva cortisol test to look for this.
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happyone




 
 
    
 

Post Fri, Jun 17 2022, 9:29 am
A CT scan would show chronic sinusitis which an MRI doesn't clearly show. I'd ask for that.
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amother
Amaranthus


 

Post Fri, Jun 17 2022, 11:48 am
invisiblecircus wrote:
My 10yo DD started complaining about regular headaches several months ago. For the last 3 or so months the headache has never gone away. She wakes with it and goes to sleep with it but it doesn't wake her at night. The pain is usually light but at times it gets worse. There doesn't seem to be a pattern or any triggers to the pain worsening.

She has been examined my an opthalmologist and everything was perfect.

Neurological assessment didn't show any problems but the neurologist told us to give her magnesium supplements for 3 months. We are now a month and a half into that and it is not making a difference.

MRI showed a small venous drainage anomoly which we have been told by two different specialists has no clinical significance and is not the cause of the headaches.

Has anyone experienced anything like this? What was the outcome? Any other avenues of investigation we should persue?
9

Didn't read all the pists, but my immediate reaction was something that my dd experienced. Was a strep infection in, I think, sinus. Please check for this. One load of antibiotics and it went away,
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amother
Clear


 

Post Fri, Jun 17 2022, 12:13 pm
It might be some kind of a virus
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amother
Darkblue


 

Post Fri, Jun 17 2022, 3:25 pm
Had frequent headaches with one of mine. Long story short - his prescription allergy/asthma meds were causing them (apparently it was a rare side effect that most people don't get with this med, but he did). Stopping the meds ended the headaches.

Is she on any medications, prescription or otherwise?

Refuah Shelaima!
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invisiblecircus




 
 
    
 

Post Mon, Jun 20 2022, 4:24 pm
amother [ Coffee ] wrote:
Was the pneumonia caused by the bacteria mycoplasma pneumonia? It’s associated all over the literature with arthritis and is usually due to chronic persistent low level infection. This can be causing the headaches as well. If you’re not sure, ask your gp to run mycoplasma igm AND igg. They will likely dismiss elevated igg as past infection, but in reality it very often indicates chronic infection.


Yes it was. Just to be clear, the arthritis was connected to that but that went away more than 2 years ago. Not saying it can't still be related, I'll definitely ask about it, but strange that the neurologist didn't look into that a bit more.
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invisiblecircus




 
 
    
 

Post Wed, Jul 20 2022, 8:14 am
UPDATE

After insisting on further bloodtests, results are positive for mycoplasma (IgG and IgM) and dubious (higher than negative, lower than positive) for cytomegalovirus.

I am waiting to hear back from the pediatrician, but for those who have dealt with this, what were the next steps and end result?
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amother
Forestgreen


 

Post Wed, Jul 20 2022, 8:31 am
invisiblecircus wrote:
UPDATE

After insisting on further bloodtests, results are positive for mycoplasma (IgG and IgM) and dubious (higher than negative, lower than positive) for cytomegalovirus.

I am waiting to hear back from the pediatrician, but for those who have dealt with this, what were the next steps and end result?

I was the one who wrote that my child was diagnosed with mycoplasma a few pages back. His symptoms were constant headache (that was the constant) and on and off low grade fever with coughing.


The first step for mycoplasma is a specific antibiotic (I forgot the name). Because of the cell structure of mycoplasma all the other antibiotics will not work, only this one. You may need a longer term antibiotic treatment (we did).

The next step (if the antibiotics are not enough) is a neurologist for the headache. We were actually given a concoction of vitamins/minerals by the neurologist and bh it worked, my child is bh symptom free for over a year now.

(Sorry I edited my post as I'm remembering the sequence).
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amother
Firebrick


 

Post Wed, Jul 20 2022, 8:40 am
When my child was diagnosed with mycoplasma, he was put on antibiotics
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invisiblecircus




 
 
    
 

Post Wed, Jul 20 2022, 9:05 am
amother [ Firebrick ] wrote:
When my child was diagnosed with mycoplasma, he was put on antibiotics


My DD was diagnosed 4 years ago and given antibiotics at the time.

I'm assuming this result pertains to that infection.
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amother
Mauve


 

Post Wed, Jul 20 2022, 10:54 am
invisiblecircus wrote:
UPDATE

After insisting on further bloodtests, results are positive for mycoplasma (IgG and IgM) and dubious (higher than negative, lower than positive) for cytomegalovirus.

I am waiting to hear back from the pediatrician, but for those who have dealt with this, what were the next steps and end result?


I can speak to CMV (Cytomegalovirus)... It's not likely to be causing long term headaches. CMV is something that is very common, most folks get it and have no idea they have it, it only presents issues for those with serious illness or immunosuppression. I would assume that the CMV is likely irrelevant

Refuah shelaima!.
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invisiblecircus




 
 
    
 

Post Wed, Jul 20 2022, 11:07 am
amother [ Mauve ] wrote:
I can speak to CMV (Cytomegalovirus)... It's not likely to be causing long term headaches. CMV is something that is very common, most folks get it and have no idea they have it, it only presents issues for those with serious illness or immunosuppression. I would assume that the CMV is likely irrelevant

Refuah shelaima!.


Thanks. I'm aware it's common, I just mentioned it because it didn't come back negative.
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amother
Coffee


 

Post Wed, Jul 20 2022, 12:24 pm
invisiblecircus wrote:
Thanks. I'm aware it's common, I just mentioned it because it didn't come back negative.
Chronic mycoplasma is often secondary to Lyme. Cmv can absolutely become chronic and cause neurological sequelae including headaches even in the seemingly healthy population.
Your md might give antibiotics for the mycoplasma but they will probably tell you there is nothing to do for cmv, and/or the result is insignificant. Just be aware that in the event you want to treat the cmv, there are alternative protocols you can try.

Aside for directly hitting the infection, there are also ways to support the nervous system while it heals.
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amother
Cerise


 

Post Wed, Jul 20 2022, 12:34 pm
Following…

Mycoplasma pneumonia can be treated with a zpac (azythromycin).

Might be worth her taking a round or two to see if it helps.
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amother
Lawngreen


 

Post Fri, Feb 17 2023, 1:16 pm
OP, how is your DD? We are going through this now with my DD, constant headache for 2 months. Her neurologist just did more blood work and now I just got a call saying the mycoplasma was a bit elevated. They are referring me back to her pediatrician for treatment, but I'm wary based on the other threads, I want to be sure we do this right the first time. What do you suggest?
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amother
NeonYellow


 

Post Fri, Feb 17 2023, 4:18 pm
amother Forestgreen wrote:
I was the one who wrote that my child was diagnosed with mycoplasma a few pages back. His symptoms were constant headache (that was the constant) and on and off low grade fever with coughing.


The first step for mycoplasma is a specific antibiotic (I forgot the name). Because of the cell structure of mycoplasma all the other antibiotics will not work, only this one. You may need a longer term antibiotic treatment (we did).

The next step (if the antibiotics are not enough) is a neurologist for the headache. We were actually given a concoction of vitamins/minerals by the neurologist and bh it worked, my child is bh symptom free for over a year now.

(Sorry I edited my post as I'm remembering the sequence).

Can you please share which neurologist treated with vitamins/ minerals?
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