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SCLS and systemic candidiasis

Lily13 Message
8 Oct 2018, 08:32 PM

Hi, 

First I apologize for my English! 

I have a Clarkson syndrome evolving since several years. At first, the symptomatology was chronic, but gradually, crisis became more and more severe (since October 2017). 
I am a nurse, and the swelling really complicated my practice, both in physical and intellectual requirements. I am in leave sick since April 2018. 
In February 2017, although I didn’t had any risk factor, my blood test showed a systemic candidiasis. Since then, I took fluconazole for several months but the candidiasis is still evolving and very difficult to keep under control. 
I noticed that the days before a SCLS crisis, in addition to sinusitis or flu syndrome, I am very tired, my body temperature goes down to 32 or 33°C, I am achy, need sugar, and in the same time the elimination begins to decrease ! ( I have the notion that Candida albicans needs sugar to survive and grow ?!)
In my case, the consumption of sugars seems to play a role with the occurrence of oedematous crisis.
I have been taking Fluconazole for several months and as soon as I stop it (or eat something too sweet), gradually oliguria starts again (and others symptoms follow). A serology was performed again this month. Candidiasis is still evolving despite of the Fluconazole.

I read a lot about the SCLS but I never found any publication reporting tests between SCLS and systemic candidiasis. However, Candidiasis could lead to an hypovolemia shock.
So do you think it could be a link between these two disorders ? (Candida albicans by itself, or a protein that it would produce etc)

I am so curious and would love to get your opinion on this subject !

Best regards, 

Stéphanie

 

 

aporzeca Message
9 Oct 2018, 01:46 PM

Stéphanie,

Welcome to our Community!  As to your question, I have never heard of a reported biochemical or even statistical relationship between SCLS and systemic candidiasis. Systemic candidiasis is the most common fungal infection among hospitalized people in high-income countries, so you probably picked it up in the ICU while you were sick with an episode of SCLS or some other illness that weakened your immune system.  For more information, see https://rarediseases.info.nih.gov/diseases/1076/systemic-candidiasis 

I wish you a full recovery from the candidiasis, and in the meantime, if you are not already, you should get yourself immediately on a preventive therapy of monthly immunoglobulins for your SCLS, because the combination of both diseases could certainly kill you any day!  I see that you live in Geneva; perhaps you should discuss your situation further with a retired physician and SCLS patient from our community who lives very close to you in Sion, see claude53.  You can email him directly. 

Lily13 Message
9 Oct 2018, 03:11 PM

Thanks ! 
I sent you an email, and to Claude too!  wink

I am so scared !