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Discussion Starter #1
For months I've been discussing my son's lupus symptoms with a friend who knows a young man with similar symptoms. Just as we were getting closer to a lupus/scleroderma diagnosis, the other boy was diagnosed with microplasmas. I looked it up and the symptoms indeed resemble what my son is experiencing, but the site she sent me seemed like voodoo medicine to me. Thoughts?
 

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Hi zusia,

There is a lot of rubbish out there and if you can believe some 'practitioners' and I say the word lightly :wink2: it is the cause of every disease known to man!

However it seems it's hard to diagnose it specifically but there is a test called the polymnerase chain reaction test (PCR) that probably comes closest to being accurate but is by no means foolproof. If you are concerned then you could ask Nick's docs to do it and they may oblige. I'm sure though that they have run a stack of Immunoglobulin tests on him anyway and that would at least point them down a similar path if they thought something like mycoplasma was the culprit. If he has had a positive ANA and presumably positive Scl70?? from what you said then that's the camp they would be in and with good cause.

Good luck, do let us know how he gets along at his next appt.

love
Lily
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Hi Zusia,
I don't know anything about mycoplasma but I'm learning more and more about lupus.
The thing is that the symptoms are so diverse that is is really easy to find a number of people with symilar symptoms. It is known as 'the great imitator' for that reason, and why its so hard to diagnose.
You seem to have a good team of docs behind you so you could always run your thoughts by them to put your mind at rest.
I can relate to the feeling of not wanting to leave any stone unturned when it comes to our kids' health.
The very best of luck to you both
 

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Discussion Starter #5
Thanks guys-- actually, I was more worried that the other boy was not getting proper medical attention. His naturopath apparently sent him to some lab in Arizona who diagnosed him with blood tests. Sounded fishy to me but what do I know. ;)
 

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Hi Zusia,

I know absolutely nothing about it either but I agree, sounds fishy to me too... If I were his parents, I'd be wanting a second and very independent opinion.

Katharine
 

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Hello Zusia :)
It is always quite remarkable how people come up with all sorts of notions and treatment suggestions when lupus is mentioned, or, to my mind, how treatment choices are made. More vitamins, eat more fruit, go out in the sun more, all from my dear old mother.

How about bathing in the dead sea - excellent for psoriasis, was one neighbour's helpful suggestion.
Thank you but I do not have psoriasis. I have a horrific mental picture what would happen to me if I floated in a strong saline solution in broiling heat. It would be very "interesting".:eek:

I go along with mainstream medicine after hearing and reading about it all. I think that if it is good enough for the world's most dedicated lupus specialists and researchers, it is good enough for me.

If I have to wander thousands of miles from home and pay huge sums to a alternative practitioner to treat me with some unorthodox therapy I am straight away suspicious. Especially when there isn't any evidence of the validity of theory or treatment efficacy that satisfies me and sweeping claims are made for its use. And even more when the proposed therapies run counter to all my understandings and involve me quitting my medicines.

If you use advance search ( mycoplasma) you will find previous mentions.


:)

Clare
 

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Clare-- I come to you via the autism community, and believe me, I know exactly of what you speak. If I had a dollar for every cure tossed at me.

The thing is, my son has come a lonngggg way from the head-banging blood-curdling toddler. He's now in 7th grade, accelerated classes, 4.0 GPA, and a nice group of friends. And I didn't throw thousands of dollars of therapy at him. I just raised him with high expectations. But he's still autistic. That will never change.
 

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zusia;545758 said:
The thing is, my son has come a lonngggg way from the head-banging blood-curdling toddler. He's now in 7th grade, accelerated classes, 4.0 GPA, and a nice group of friends. And I didn't throw thousands of dollars of therapy at him. I just raised him with high expectations. But he's still autistic. That will never change.
That is absolutely amazing and so beautiful! I wish I had a mother like you!

Hugs,

Barb
 
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