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Mycoplasma testing simply a "negative"


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Hi,

 

After doing some research based on responses to my previous posts, I carried my son in to a new doctor and mentioned the mycoplasma issue. He has been infected with "pneumonia" on several occasions since about 3 years old. I do remember hearing the word mycoplasma several times. Anyways, I do feel this doctor listened. I feel very blessed. She admitted she was clueless about PANS/PANDAS, but did read my NIMH literature and has no problem doing whatever Dr. K and/or any specialist suggests. She ran a mycoplasma lab. It was simply ordered "mycoplasma" and came back as negative. There were no numbers involved. Is this an accurate test to determine if he has a chronic infection? I saw more in depth things like "IG something" tests. I know it is probably out of her league and her too, but we are working on referrals. She is suggesting Rheumatology at Vanderbilt. Opinions on that specialty/hospital?

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When we order it (and I am reading directly off of the Labcorp result), it is listed as Mycoplasma pneumoniae. It tests for bothe igg ("old) and igm ("new" or current). It has numeric range demonstrating "normal" to high. We test for it every 3 months and it always is presented this way. Yours does not sound very detailed or efficient.

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I would concur with bees. Any Ped should know what IGG and IGM are. Our ped however gave us a script for several things(myco at my request) which we did. With DD's in flare, she told us one dd had EBV previously and other highly allergic to cats. What she did not tell us was anything about the IGG or IGM numbers? A few months later when we left and got all blood work paperwork, our dd was 5.9H with a positive of >.9. Needless to say we were upset. I have had other ped and ID doc not sound concerned with 5.9H (H being for HIGH)My kiddo is in crisis and for them to not even tell me she was having this response was maddening.

 

Momma, I would suggest getting to someone that is an Integrative Ped or DAN doc or anyone Pandas/Pans literate. Also, not sure of your history as I have not been following much, but best what I can gather, the typical plan of action is this:

 

1) debulk any infections-----viral(EBV, ect) bacterial(strep,myco,etc)

2) remove known triggers that cause immune to respond (pet dander, food allergies(casein is a big one for us)

3) control inflammation with either natural or OTC anti-inflammatories.

4) Supplement with deficient vitamins, minerals to help keep body healthy and begin to rebuild immune system.

5) Try to go whole foods eliminating processed stuff, dyes ect.... Also, removing known trigger foods as in #2, milk,gluten, soy etc.........

 

Keep your head up and keep fighting. There is hope. It does get better. Be your kiddos best advocate. Don't feel sorry for pushing to get him better.

 

If you need anything else feel free to PM me.

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