I've been following all your posts, it has been heart breaking to read what a lot of you are going through. I know how you all feel I was getting awful symptoms this time last year, I had to work part time I was that I'll, I was very worried about my future as most of you are!
As I have mentioned in previous posts I was taking Ionic Silver also known as Bio Silver, 3 months now everyday 20 drops 3 x day (professionally recommended dose!) the silver has changed my life I'm not the same person I was this time last year. I'd say all in all I'm 80% better in health and energy, I'm back to living my life again, back to my new business that I started before I became I'll!
I'm also taking Krill oil once again bloody amazing, I take 1x500mg per day but you can take 2. Foggy brain? Can't cope? Stressed out?
Please do yrself a favour and do some home work on what I have told you, you have nothing to lose also Kiwi fruit and plenty of garlic and ginger I also only drink bottled water and also my memory is 75% better!
I still have to take pills and some side affects need pills, the ionic silver is not good with pain neither is the Krill oil. I use the ionic silver as a back up for my immune system and I believe it works for me.
My illness is progressing but I'm surviving a lot better taking the silver and the Krill oil.
I wish you all good health and happiness. One more piece of info you may find useful, if you eat lots of bread and pasta yr not helping yrself! The body finds these products the hardest to digest in turn making you tired and fat! Cut out bread and pasta from yr diet and you will see a vast improvement in yr energy levels and the weight will drop off also!!!
Take care everyone
Love you all
Paul X
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My teenagers use a face cream with colloidal silver in it which calms acne, and yes to omega fish oil been on max dose since age 12, due to how inflamed I appeared to be, Also I go further than the no pasta and no bread, I am fully gluten free, as gluten is a proven known irritant with autoimmune disease. I have had to alter your post and take out the link to metabolics etc etc as it is against our guidelines... Keep well. MaryF
Hi my kids do not have rosacea, but I have severe psoriarsis flares, I just buy my aloe vera gel in bulk when on offer, usually off the high street. I have sent you a message, it is freely available in health food shops.
I wonder if you now have managed to get an APS-Specialist to get your INR up to a number where it is easier to avoid new dangerous symptoms like PEs, TIAs etc etc?
Last time you wrote that you were mostly UNDER an INR of 3.0 and had very rare veintests done.
We have too thick blood ........ which has to be thinned medically ! At a constant level. That is all.
Warfarin can be difficult to monitor for some of us, especially if we are not backed up by a clinic and a doctor who understands that we need a higher INR-level and frequent bloodtests.
There are other drugs also but the main thing is that the blood is correctly thinned. A lot of other things can also help us like healthy food, exercise etc.
I believe the Krill oil is good. I took Omega fish oil also before I started warfarin. I practically never eat pasta if I not have to and avoid bread with wheat in it.
You wrote that your illness is progressing ........
I thought you had now found a good APS-doctor who could help you to stop further progressing. We can not do so much about the past but we do need help to avoid further damage in the future.
Thank you for concerns and advise, anticoag clinics disagree, they say 3 fr INR is fine?!???! My bloods went to 5 so they stopped warfarin for 2days and put me on Fragmin! My bloods dropped to 1.6 INR, I felt bloody awful when it was 5 I felt great! Anticoag nurse gave no reason for not putting up my INR target! If I think they wrongly diagnose me I do it myself, I not recommending that but I believe I have stopped me getting a serious blood clot (I have been coughing them up!)
I know different drugs react differently for some people, this is why I ask other to do home work before taking any other meds, alternative or otherwise!
I believe everyone with an autoimmune system problem should most definitely take ionic silver! And those with foggy brain, memory lose etc should try the krill oil!
I did and I'm not going to look back, it was he'll on earth before the silver and krill oil!
I'm going to buy a self testing machine which I believe to be imperative with a fluctuating INR!
To answer yr question, I'm still struggling to find a doctor or specialist that know about APS in depth!
I don't trust any of them with my life! They are frightened to death of warfarin and regularly make stupid mistakes and private isn't much better!
They are people so expect errors, I go with my gut.
Nice message Paul I agree with much of what you say I too strongly feel there are many natural products that can help or possibly reduce medication in time. I do believe each of us need to do our part in helping ourselves as well as seeking the much needed advice and help of the professionals.
Bread and pasta are both gluten foods which are commonly known to cause inflammation in the body and are suggested as being best avoided for APS sufferers, those with autoimmune condition a and the general populous. We can each read up on these things to help ourselves. Admittedly it is difficult to stick to a complete gluten free diet and many recommend not removing it entirely anyway.
I wanted to read more so don't think for others, or care what they think of you! You'll have a much happier life :0)))
Can I point out, I did stop taking some mild medication with out the docs consent! I don't condone this in anyway shape or form, I got unwell and upset my doc!
The ionic silver is NOT a replacement for any of yr meds. Please do not change yr meds unless you see a doc first, you will be the one that suffers because of it!
Also important fact, when you feel well, energetic and full of beans it's bcoz yr taking yr meds and they work! Don't fall into the disbelief that you can stop taking yr meds, maintain meds at all times and make a diary!
Remember. anything homeopathic is used to support not replace, it's all abt quality of life not a cure!
A completely wheat free diet is hard to maintain and expensive, if you do not have medical issues I stick by the things you eat the most, like bread and pasta, you can eat plenty of rice and other great seeds on the market that you will like. The joy of my proposal is you can still have the things you like, please remember cakes are full of flour!
I agree with all of that in the past I've judged how things work on the way I feel and IF meds can be reduced I'd only do so on the consent of my doctor.
Do you have primary APS? Do you have serveral antibodies for APS? Probably you do not know as you have not yet met your APS-doctor. This site has already approved APS-doctors at the charity website. If you live in England that is. Have you looked at it?
If you have the antibody Lupus Anticoagulant you will have problems to selftest. I have LA but I live in Sweden where I actually think we get a good treatment if we live on the right spot, meet the right doctors and hospital and are up to date ourselves with how the APS affects us.
If I were you I would as soon as possible try to find your APS-doctor. Make a lot of bloodsamples ( Iron, vit B, D, all the Thyroid bloodsamples 3 - 4 of them) as Mary has suggested and find out which antibodies you have pointing to a diagnose of APS?
If you are tested positive for Lupus Anticoagulant it is not so easy to have a selftesting machine. I am positive, but I now selftest with success and is backed up by my doctor and hospital here in Stockholm .It has taken over 2 years to reach this goal as I am selftesting. Now the hospital only double-cheque on me every 3 months and I take care of my own monitoring now. That takes time to learn!!!
I have a discrepence between the labtest value and my machine. Always the same difference. We have checked this for 2 years now and know it can differ 0,2 - 0,3 in INR.
If Ihave an INR of 4.0 on my machine i probably have 3.2 in the vein at the lab.
It is very important that you keep your therapeutic level to keep this illness "inactive" or what you call it. I did not understand that I had a lot of microclots and even ev PEs earlier. The microclots are most times not visible on an MRI and you can have lots of them.
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