Hi my name is Katarina and i am from Australia i was wondering if anyone has had a problem with fluid around the heart associated with SCLS ,and if so how did you alleviate the problem. Cheers Kat

Hi Katarina. My name is Warren and I was diagnosed with SCLS in 2011. I have not had any problem with fluid around the heart although I do have an enlarged heart. Are you being treated with IVIG.

Hi Warren ,yes i hav been treated with IVIG for about 18 months and in that time i have accumulated the fluid around the heart approx 8-10 mm.

Hi Katarina - I had fluid around my heart from SCLS on three occasions. The doctors thought they would have to drain the fluid but in each case the fluid gradually dissipated of its own accord. I hope the same has been true for you. Davec

Thanks Davec , its great to hear that it may go away over time ,its never been to this amount before so i was getting concerned that it would get worse.I am trying to attack this condition naturally ,as much as possible, so if you or anyone else is on the natural healing path i would love to hear from you.Thanks again for putting my mind at ease . : )

Hi Kat, I'm in Melbourne and had SCLS. For 18 months. My main problem has been pulmonary oedema, major on 4 occasions until IVIG prevents it. CPAP reverses the acute attacks I had major conduction defects initially, though no pericardial oedema...this was documented by echo- in ER. The conduction defects were obscure, and may have been myocardial oedema, maybe not. What did become apparent was the onset of a significant increase in ventrivcular ectopic beats, and a very labile BP. These are constantly onitored by a loop recorder. They are triggered by stress, first and foremost. This is a totally new phenomenon for me. They are also triggered by certain foods, ncluding msg. My BP. Goes from 125/80 to 180/115 in the space of an hour. We are too cautious to use antihypertensives owing to the pulmonary oedema. BUT. While I work on stress, and diet, I CANNOT GIVE UP ON IVIG. The work on Natural is entirely in my power. It gives me quality of life. But IVIG saves my life. John

I had two witnessed syncopal episodes with traumatic brain injury most likely caused by cardiac arrhythmia and/or rapid changed s in blood pressure. I currently have an implanted EKG loop recorder but it has not shown anything significant probably because I have not had any further episodes. I am not on IVIG yet because the physicians I have consulted felt it was a greater risk than benefit. I have applied to be seen at NIH and have an appointment with an immunologist. As far as natural alternatives, I have tracked my daily protein to be sure I am not deficient (albumin levels) and try to exercise regularly to keep blood circulating, prevent fatigue and aid with stiff and sore muscles and joints. I also think getting proper sleep is essential for mental and physical health. I use CPAP at night which seems to keep the pulmonary edema in check.

It is interesting that cpap helps at night. It certainly makes a difference during the attack. What flow/pressure settings do you use?

Hey John I have no intention of stopping the IVIG it has kept me out of hospital for 18 months and has stopped the regularity of attacks . Its just up here on the Gold coast i am finding it very very difficult almost impossible to find a Dr or Specialist to take any interest in my case ,so i am researching as much as possible and having to work out ways to deal with the small leaks and side effects caused by them. I will keep an eye on it all and i hope it all goes well for you. : )

Kat, Gene is in Brissie and has been going well for some time.. Perhaps his network will help you?

I am off IvIG for the second time. The last time I had it I was in intensive care for three days. I am feeling OK but I am noticing small leaks to be starting up again. I too am looking for a doctor that was specialize in systemic capillary leak syndrome.

Hey John i would love some help,how can i contact Gene ?

Hi Katarina, Gene has posted qyuite a bit, and I have copy/pasted the ff: genecridge Posted about 1 year ago Hi John, all of my episodes of SCLS have centred around Logan Hospital in Brisbane, but the specialists involved are based at the Princess Alexander hospital in Brisbane. I am not sure of his email. Mine is john.m.carson@bigpond.com His main concerns related to travel and travel insurance. It seems he is doing well.

Thanks John, i am trying the PA hospital at the moment,thanks again for your help .Take care.

Hi Katarina, We live in Sydney. My daughter has SCLS and before she was diagnosed, in one of her episodes, she had a significant build up of fluid in her pericardium. She almost had a cardiac tamponade as it went undetected for some time. She was 2 and 1/2 at the time. They tried putting a drain in but the fluid kept building up, so they went back in put a "window" in her pericardium, to prevent this happening again. Not sure if this helps you but it certainly relieved some of the worry for us. Wishing you all the very best in your search for a specialist.