Low Dose Naltrexone/LDN?

[ehc918]

Hello! Haven't posted in a while and have been having ups and downs.

I live in California and have state medical healthcare/HMO. I pay out of pocket for a naturopath who is familiar with APS and has been so important in helping me.

I have never had a clot, but fit the description for "mild" APS to a "T". I also have chronic CMV infection and my dr feels this is a contributing factor to my overall feelings of crapiness (hehe).

I suffered ill health for 8 years, and when I tested positive for APS and started baby aspirin, it was like a miracle! I felt CURED!!! But it didn't last long and so I have been adjusting therapies ever since then and kind of go back and forth with how I feel.

I just found out about LDN and have a prescription waiting for me ($50/mo- ouch!) and am wondering about those of you who take this medication.

Currently my regime is as follows:

Nattokinaise (blood thinner), Willow Bark (aspirin), Fish Oil 4gm/day (blood thinning plus other good benefits), Zoloft, Lavender oil, Methylfolate, Vit D, and some immune modulating/anti viral herbs/supplements.

I have not been able to do a heparin/lovenox trial, and I am not ready to pursue warfarin or anything like that right now.

I am started LDN 1.5mg once daily. Any insight from any of you is greatly appreciated!

[Lure2]

Hi,

I have read that your Doctor does not want to put you on strong anticoagulation like LMW Heparin or Warfarin.

I think you need that like most of us when baby-Aspirin does not work anylonger. It was exactly the same with me. When I started Warfarin it was like a miracle.

I think you need a Doctor who understands that we have too thick blood that has to be anticoagulated at a rather high INR-range and kept at a steady level. (that goes for Warfarin).

What is LDN? Low dose naltrexone or something? Is it for pain?

Two things are important: a diagnose and anticoagulation and a Specialist who understands APS.

Best wishes from Kerstin in Stockholm

[Ozchick]

Warfarin gets a bad press when in fact it's a cheap, effective way to be anti coagulated. I know it's a pain to go and have all those INR's done and be in a therapeutic range but worth it to feel good again. I wasn't able to be in a stable range and have changed over to a newer oral anticoagulant but from all the research I've done-none of the natural therapies comes close to properly anti coagulate blood in an APS +ve person. Zoloft can also interact with natural remedies.

as Lure2 says-get a good APS specialist who can sort you out.

[ehc918 in reply to Ozchick]

Thanks for your reply. I am under the care of a licensed medical doctor who manages all my meds and supplements. I am very careful with everything I take, especially with the Zoloft. My dr is super good.

Nattokinase is being used in integrative cardiology and there are some good studies on it. Until I can find someone else, this is the best we can do.

[ladykate]

Hi, I've been taking LDN for about 5 years now. For me it has helped in that some of my symptoms were not so bad. It doesn't cure them but does help. My symptoms include paralysis,dizziness,balance issues, memory issues etc etc. I am now on plavix as well which has made even more difference to my symptoms. I am on 10 mg of LDN per day which is the dose that suits me best. If you take LDN it can take a while to find the right dosage that suits. Hope this helps.

[ehc918 in reply to ladykate]

Thank you so much! I have muscle/joint pain, headache, memory, fog, tingly hands (which is so annoying!!!) fatigue, etc. have never had a clot.

Are you on plavix for a clotting event?

Trying to find a specialist is so difficult. In the US as far as I've been able to find, you aren't taken seriously unless you've thrown a clot.

[ladykate in reply to ehc918]

Hi. I was put on plavix by my doctor when I had one of my "episodes" as I call them. He suspected it was a TIA and immediately prescribed plavix for me.

[Glomara in reply to ehc918]

Hi, I also have APS and I have the same symptoms joint/muscle pain headaches that last weeks, memory fog, tingly hands, fatigue.

I've also experienced pregnancy complications due to APS with fetal demise at 30 weeks, premature delivery at 25 weeks, my daughter is 8 years old now.

Have you tried the LDN since your post last year or do you have any updates on your treatment ?

Thanks