Sticky Blood-Hughes Syndrome Support

IV fluids

Hello everyone. I haven't posted in a while (diagnosed Aug 2014, full thyroid workup normal, live in S. California, state insurance so no choice in my drs.)

I have mild Hughes in that I've not had a clotting event, but I have chronic pain, headaches, brain fog, fatigue, etc. I have tested positive with cardiolipin antibodies late 2014 and after starting baby aspirin felt an IMMEDIATE response, but it has since dissipated. I kind of wax and wane. I'm on other blood thinners, non rx (high dose fish oil, Nattokinase [this is being used in integrative cardiology in lieu of coumadin with much success)

I have no access to an informed APS doctor, but my primary is somewhat familiar with it and is helping. Although she is a licensed physician and is working with me, she is not comfortable prescribing Warfarin or other rx anticoagulants.

Anyway, I have been doing research and have found some evidence that IV fluid therapy can help with symptoms.

Since we have sluggish blood, this would make sense as I feel like my symptoms mimic dehydration.

Just wondering if anyone has any input. I will be starting IV fluid therapy three times weekly for one month and will see if that has any effect.

Have a great day!

ehc

3 Replies
oldestnewest

HI I have no knowledge of the therapy you mention, with regard to treating you disease, but presumably you have discussed it with your main consultants, (who understand Hughes Syndrome/APS).

MaryF

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I haven't heard of this either-what is in the IV fluid? Is it just normal hydrating water+saline or does it have other additives? Look forward to see if it's been helpful.

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Hi ehc, I'm so curious about the nattokinase? How much do you take and how do they monitor it? I haven't heard of the iv fluid thing that sounds interesting,. My mom has bought me some nattokinase in case something were to happen and I couldn't get medication. I would love to hear back from you.

Amy

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