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PANDAS & Mycoplamsa Pneumonia


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Does mycoplasma pneumonia have a lot of the same symptoms as PANDAS? Our Dr was surprised when I asked for the test, and I have read on here that the test should be done, but I don't fully understand.

 

Do most kids have this in addition to PANDAS or can it be the myco that is creating PANDAS symptoms or both??

 

Thanks for any thoughts......

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PANDAS falls under the bigger umbrella of PITAND. PANDAS is just specific to strep being the original trigger. Mycoplasma Pneumonia can be a trigger for "PANDAS behavior", but if Myco P is the original trigger, the child technically would be PITAND. Different bacteria resulting in the same changes in behaviors, tics, etc. Myco P just doesn't have it's own acronymn.

Edited by Vickie
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So, the Myco P could be causing the PITAND type behavior, instead of Myco P being the catalyst by itself?

 

My son has Lyme, and is highly positive for Myco P on IGM and we suspected PANDAS, (based on behavioral symptoms and Scarlet Fever history) but he has never had a positive strep test, so I was wondering if the Myco P could be triggering all of this by itself in addition to Lyme and PANDAS/PITAND may not even be the issue?

 

I'm sorry if these sound like ridiculous questions, but I really don't know and am just trying to figure out what to do next. :(

 

Thank you for your reply.

Edited by NewBeginnings
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So, the Myco P could be causing the PITAND type behavior, instead of Myco P being the catalyst by itself?

 

My son has Lyme, and is highly positive for Myco P on IGM and we suspected PANDAS, (based on behavioral symptoms and Scarlet Fever history) but he has never had a positive strep test, so I was wondering if the Myco P could be triggering all of this by itself in addition to Lyme and PANDAS/PITAND may not even be the issue?

 

I'm sorry if these sound like ridiculous questions, but I really don't know and am just trying to figure out what to do next. :(

 

Thank you for your reply.

 

yes myco p can be the catalysst of its own..pandas is "strep specific" in name though we use it generally when we talk for any infectoin/ trigger...once in a awhil you'll see other use pan/pit

 

and a name change is coming...so it doctors wont' be hyper focused on the strep trigger only..a little brodening of the term...

we are very excited as to what the new name might be????

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Myco P can be the trigger by itself. Or there is the possibility of a different scenario. Once the autoimmune reaction begins (regardless of what the original trigger is) other things (other bacteria, viruses, allergies) begin to cause symptoms. So.....a PANDAS child whose original trigger was strep can also then have the same reaction to Mycoplasma Pneumonia and vice versa.

 

Long story short, you did teh right things to get her tested.

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Sandra (very DD 20) got MycoP at 15 and developed all possible symptoms. She never tested positive to Strep or Lyme.

She first reacted extremely well to short course with ABX (Clarithromycin) and Prednisone and got totally well for a whole year.

Viral respiratory infections have a year later retriggered the condition and short Azith and Prednisone and later, a long course of Prednisone no longer helped, nut IVIG did work extremely well and was highly effective for ca 4-5 months, till treatment was delayed and ear infection caused a bad relapse. That was back in autumn 2007.

Very bad symptoms through until January 2010 when we started long term ABX (Azith 500mg), still going on. No more sounds or choreatic athetotic movements and far better ability to concentrate but rather debilitating OCD, mainly because she is not able to walk unaided and can get "stuck", unable to go out and on when visiting the loo, cannot watch moving pictures ... but albeit backslides in the form of bouts of hair pulling (greatly helped by NAC) I would say that the bottom line is that she is slowly getting better and once she gets over the idea of not being able to walk without holding a yarn tied to me or to the sofa, we shall be million light years ahead.

Since January her MycoP IgG, which kept rising ever since she contracted it way back in 2005 (but always reacted and went somewhat down following treatment) dropped from 200 (positive border at 35) down to 39 in June matching the other changes listed above.

We also strongly believe (based on past experience) that the process would have greatly benefitted from additional IVIG, but were denied treatment. Finland seems to be way behind the US in this respect, as our GP is probably the only doctor actively treating a PITAND case.

So to the best of our knowledge Mycoplasma Pneomoniae was most possibly the cause and the trigger.

One has to note that the names PITAND and PANDAS are rather misleading because the phenomenon is not necessarily limited to P-ediatric patients (it is only so that Swedo and her team paid attention to them and not to other age groups) and there seem to be several culprits causing the condition, so far we know of Mycoplasma Pneomoniae, Strep and Borellia (Lyme). Some patients seem to have only one of them while others test positive to more than one.

To the best of my knowledge, there is no such test taht can diagnose PITAND or PANDAS or whatever one may want to call this condition, but figuring an infection helps select more suitable treatment (Augmentin and the like work well for Strep but not at all for MycoP while Azith works well for both.

To the best of my knowledge the best diagnostic method is the patient history, the sudden outburst and the reaction to antibacterial, anti-infection and imunomodulatory treatments.

If the patient reacts well to TS related medication but not to ABX, steroids, and immunomod treatments, the line of treatment is different, if the reaction is negative to both TS and ABX, steroids, and immunomod treatments, there may be hope in mental health related medications and therapies.

So far we call in PITAND and PANDAS but if studies were to concentrate on adult patients or start with Lyme patients the acronyms would have been different.

PITAND is not the only condition the medical professionals do not know much about at this point. Laymen are made to think they do, but as the body of knowledge grows the view of the medical professional community on many conditions changes, even if some members of that community find it hard to adapt to these changes.

I would also dare say that at this stage the field is still badly blured by limitations of research financing and planning and experience of treatment for any specialist to be able to absolutely say which case is which.

We may wake up one day to the news that many more mental health and TS cases are in fact bacteria caused and triggered, or we may not.

 

As for your child, I think you got the answers to go by and treat - you kow your son has Lyme and Mycoplasma pneomoniae - have the doctor treat those conditions (the only problem parents and patients normally have is finding a medical professional who believes in daring and sticking with the patient). Experience of treatments for these conditions exist, so make your active and willing doctor read the forum from beginning to end. (Of course, it would have been best if we could make all those treating our patients communicate and exchange information on their experience).

Based on our recent 5.5 years of harsh experience my only advise is persevere! I think treatment is not miraculous or fast and even when it does take place, the condition seems to be capable of coming back. Yet, it may be coming back because we do not know what it takes to eradicate the actual cause (e.g. we have no idea how long to go on with ABX, but for a long as her reaction is of even the smallest improvement and side-effects mild, we shall go on).

We ahve heard of some kids who got well - was it because they were treated at oyung age or aggressively, it is had to say.

Get ready for a long fight, select a proactive medical professional to be at your side and be committed long term - and make sure you have lots of emotional support for possible hard times, if they ever come.

After all the horrendous times we have gone through, Sandra, Marjaana (our persevering GP) and I have not lost hope, and I want to believe this perseverance will take us through to the happy end.

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Thank you all for sharing information with me.....it is GREATLY appreciated. I feel as if I'm really fumbling here trying to find the best plan for our son.

We are limited on antibiotics for him as he is allergic to zithromax - has anyone used doxycycline?

 

 

 

 

 

Bat-Sheva Myllys - my heart goes out to you and your daughter. Thank you for sharing your story and your positive outlook. I hope we ALL can find the answers to this horrible puzzle our children our suffering with.

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