OHSU Update

[beccafullcircle]

Hello again to everyone,

The specialist from the Portland OHSU called me with the new results of the blood draws that they did a week ago Tuesday. I'm beside myself with the news, I need to fully understand what the Doctor is telling me, yet he said the three specific blood tests that determine APLS, the main one that showed the result read 67.5 and when I first was diagnosed a few years ago I was over 50 also and remained that way even when they took me off the Warfarin to see how my blood reacted and to take blood without the Warfarin in it, in order to determine if the Warfarin would be life long. At that time a few years back, the hematologist at oncology at St Charles gave the firm diagnosis and also sent me to another specialist which did another strain of blood tests diagnosing me with APLS and Lupus non specific. When I came into the Portland OHSU last week, the specialist had viewed my charts sent from where I live, a few hours away and stated all the symptoms and the history work up and the results of the doctors here and agreed it was APLS w/Lupus non specific. Well, new blood results state now that my blood is down to a 6.5....WOW SERIOUSLY! I sat on the phone shocked, excited, baffled and asking so many questions. He stated that "my body is healing itself", he also said that he feels that in three months they will be taking me off of Warfarin and erasing the diagnosis. Has anyone had this happen please share please share?

I dont know any of you on a personal level outside of this forum, yet I have to give hope because I have been so terribly sick and have a history of miscarriage, ectopic pregnancy and years of off and on body struggles that ended in severe hemorrhaging while in India when I was in the mission field three years ago only to have a severe Pulmonary embolism that almost took my life and DVT in my legs. The specialist stated specifically that there were so many things that led to this diagnosis considering I was in India and had to fly back after the first hemorrhage which was a 19 hour flight, yet this alone is not what could have caused such a trauma. Blood tests are the determining factor. Mine have been clear cut according to all he doctors until now. How does APLS go away? Does anyone know?

The specialist has asked me for more scans and tests through the next three months to further learn and build the results, yet he stated the significant drop from the last blood draws which were only two months ago, my body is indeed healing itself. I have so much faith in God and know that healing is real, I serve in missions and have dedicated my life to ministry, I believe this to be another baffling miracle. Since last Friday I the pain has ceased and I feel almost back to my full self in many ways. The doctor stated that all the symptoms, pains etc have been from the level of trauma/injury from the PE and DVT's and blood filled cysts. He stated the recovery time from a Pulmonary Embolism is very real and lengthy laced with much pain. I feel like the heaviness in my heart is leaving from carrying the wonder that comes with this disease. I hope to have a full report with more details for everyone to share. I also have found so many helpful aids to feeling better since I was diagnosed. I would like to share the tea's that I drink, the fluid intake and the vegetarian diet that allows fish and eggs also if anyone is interested. I feel better with eating clean and with heavy fluid intakes. The Indian organics that I also take I believe have helped along with Acupuncture and first and for most, my faith in God. I have sat and had communion sometime daily when the pain levels get too high or I get sick form a virus, pneumonia. I have chosen to stay away from any kind of pain meds and have only adhered to Warfarin. I take 7.5 ml a five days a week then half a pill two days week. I have kept my body very organic and have even denied tylenol most always. I have not used birth control ever in my life until they tried to stop my blood monthly for only three weeks prior to the PE. I have kept a modest weight and am a workaholic and typically a very joyful, purpose filled person. I love my lifeswork at the mission that my sons and I built thirteen years ago. I serve over 4000 people a year that are in need plus global mission work. I know that God is healing me, I also know I have taken good care of my body, I also know that I have had good care in the medical field and believe in miracles in medicine also. So for anyone out there that is reading, I know there is hope and I am praying to give full report with documentation from the doctors to show the firm results of this journey coming to an end. I would also like to hear from anyone that has experienced this as I am seeking answers as I have not heard of APLS disappearing? Not remission states but literally disappearing. Thank you to everyone on this forum that continues to support and share, it has helped me tremendously. I would not have gone to OHSU if it was not for this forum.

Peace, joy and hope

Becca

[MaryF Administrator]

Hi, thanks for update, for some faith is helpful, I don't want to worry you, but Hughes Syndrome APS does NOT go away, you can go through periods of negative testing, but the disease does not go away, be very careful about taking on that idea. It is great you look after yourself well physically and emotionally so. I do the same, including being gluten free which makes a difference to Autoimmune Disease, but you need to seriously remain vigilant if you are not to have any cover with medicine of any sort that either acts as an antiplatelet medication or indeed thinning your blood in terms of anticoagulation. For myself it is clear that my clotting incidents are high risk in pregnancy, same for my sisters so I had Fragmin for those times, and now am on Aspirin and LDN, however this does NOT mean that in the future I won't need more, as our bodies changes and especially women hormone wise. Please remain vigilant regarding your condition, I know it is a balance between paying attention to it and getting on with life, but be careful. MaryF

[beccafullcircle in reply to MaryF]

Thank you so much for the wisdom and uplifting guidance. I agree there is a recipe, I am seeking answers and have not heard of this disease "going away". This specialist is the one making the calls right now with stating I will be Warfarin free with the diagnosis off the table. He seems to think that the factors leading into the diagnosis have something to reserve the diagnosis considering I had a long plane ride back home, I arrived off the plane ride in May and had he PE and DVT in December so there was quite a gap of time. So I am seeking ALL answers and understand that medicine is practiced. I have had so many medical opinions and the journey between so many doctors has been wavering all the way even till now. The only common piece it seems is the firm diagnosis of APLS and Lupus non specific for the reasons behind all my history leading to the PE and DVT. This does not cause doubt with my faith, as I KNOW GOD HEALS, I simply know God also gave us wisdom and I will utilize this in all ways possible. I also would love to shout from the hills full healing and I know I need facts and documentation to substantiate to further help anyone else that is struggling with this unpredictable complex disease. My dad passed away from a blood disease and I almost did too, I do not want to be in India again with the same situation maybe even worse. So please help me with as much information as you can. I will keep you all posted, I will post the doctor notes when I physically see them. There is hope always and I am seeking the answers to back this

Thank you for your kindness and wisdom

Becca

[MaryF Administrator in reply to beccafullcircle]

Ok: of course I/we will help you, and we all have our own belief systems or frameworks but as a rule we can't do religion or politics on here, against the guidelines of HU really, I am not a believer, but I respect others wishes and celebrate cultural differences etc.

You need to contact somebody on here, unless other members in your area have a better idea: apsaction.org/

Also when in India: neurologyindia.com/article....

ncbi.nlm.nih.gov/pmc/articl...

japi.org/march_2010/Article...

on all the publications names and locations.

Best of luck

MaryF

[Manofmendip]

Hi.

I totally agree with my colleague Mary.

Please take care.

Dave

[Lure2]

Hi Becca, I also agree with my colleagues Mary F and Manofmendip. You must believe us here Becca. APS do not go away. It is lifelong but it is treatable with the right anticoagulation.

I was so happy that you had got a Coaguchecque machine and could control your own INR much easier. I do it every second day.

You are such a wonderful person and I admire you and your work you do with your husband but I think our God wants you to remain well.

It is so important to be in range with the INR for so many of our organs. Antibodies go up and down. Some here are negative from the beginning.

I thought you had an APS-doctor that understood that. Could you show him some papers. You shall not stop warfarin!!!

Do not ever let them stop your warfarin. I know you have said to me it has made you feel better as it does for so many of us here. It is our lifeline.

Please let us hear how it goes and try to find some papers with this info about APS not going away.

Love from Stockholm and Kerstin

[Lure2]

Of course you can stop warfarin and change to another Anticoagulation drug that perhaps suits you better.

. But you shall never be without anticoagulation.

I only know how much Prof Hughes talkes about warfarin and how important it is to be able to selftest in order to be in range with the INR.

Kerstin

[dar7 in reply to Lure2]

Hi I was just reading your posts and thank you I didn't even know there was a machine to test coagulants or antiboties I will most certainly look into that for my fiancee Mike whom has had a stroke then a heart attack and diagnosed with APS and cronic lyme he is on plavix so we are trying to find a way to treat lyme while on plavix our llmd wants to take him off plavix I say no way but thank you so much for your input it really helps to get support here I'm in northern VT and maybe someone knows another llmd in our area

[Lure2 in reply to dar7]

Dear dar7,

Sorry but you misunderstood me. There is not any machine to test antibodies as far as I know .We are not medical trained here but I talked about a CoaguCheques machine to test your INR when you are on the anticoagulation drug warfarin.

So sorry about your fiancee Mikes stroke and heart attack. If he is going to start warfarin he can certainly buy such a machine. It is very important to have a specialist for APS. So few doctors understand this illness. Important also to have the right anticoagulationdrug.

There are a lot of books available on Hughes Syndrome Foundation Charity website.

I prefer "Sticky Blood Explained" by Kay Thackray. She has APS herself and it is very good also for relatives to understand this illness. I Think you should buy that.

Best wishes to you and your fiancee Mike,

Kerstin in Stockholm

[dar7 in reply to Lure2]

oh ok thank you I will try to get that book and find a APS Dr. appreciate your feed back thanks Darlene in VT

[DannyBoy1]

Becca:

That is just marvelous. It does indeed give hope. I know that God heals when He chooses and He can interrupt any medical condition. I am so happy for you. I would love to know about the diet you are on and the details of it. Praise God!

[beccafullcircle]

Hello everyone,

Sorry to take so long to respond to all your wonderful, helpful comments. This week took me away in order to get caught up at the mission. It's been such a battle now with the contradictions of all the doctors now collaborating, I am overwhelmed with the gigantic gaps of medical opinions. The specialist in Portland is from OHSU in the Oncology/Hematology department (Dr. Delaurghy sp?) He is a sweet individual that seems to have positive knowledge of the blood disease.

DannyBoy1-my diet is vegetarian diet. I am not vegan so I bring in fish and eggs to my diet. I am now working into more of the Paleo diet w/the exception of remaining vegetarian. I do not eat anything with a face on it unless its a fish or shell fish. Every morning I drink a special tea that helps with circulation, it is called Yerba Matte, I only use honey (no sugar or sweetners) When I use milk I only use Almond or hemp milk-never dairy. I work to stay away from any kind of cheese, even though I love it, so when I do eat cheese I use very little or only as a treat. I eat whole wheat or multi grain, NOTHING White. My fluid intake is heavy, I drink coconut water every single day.

My morning routine is two full containers of yerba mate tea w/honey and almond milk, then water after all day long with a few coconut water breaks. Fluid is key for our blood

I eat "clean" and work to eat organics yet they are very expensive and so not always is this accomplished. My husband and I have our own garden and grow a community garden for our outreach center so I eat lots of squash, carrots, salads, radishes. I have learned also that cilantro is good for the blood so I grow this from home and toss into my omelets and whatever else I can. I eat garlic, onions etc also. My food has become specific, its been hard being a mom though and having chips around so sometimes I toss my diet aside and eat a few of them no and then. I was also told by a doctor who used to work at the Mayo clinic to stay away from ice cream as it is made with kelp and this is an ingredient that quickly clots the blood along with dairy does the same, supposedly.

At first I was told to work on an anti inflammatory diet and did that but I have found that simple is best and to eat clean and stay away from white and dairy. It has worked well for me and my INR's are easily controlled and steady. I have moved my INR level up to 3 or 3.5 and remain there as I have recently learned that I feel much, much better at this level. I am operating mentally and physically with the joint and brain delays significantly better now.

My daily routine is very consistent, I wake, I pray, I drink tea and hydrate, I study and go to work where life is not consistent so my routine is important to me in order to keep up with what I do and the fluid stance I have to take each day at the outreach center. At night I hydrate more and eat before 6 and hydrate more also before early bedtime. I am an early bird

Hope this helps.

Kerstin-Thanks for all your encouraging words. I want you to know I am listening very closely and I am seeking all the facts to not have further health barriers. Thank you for caring so much and for all the good information that you openly give. I bought Dr Hughes book and am hoping to see it in the mail this week. I hope the specialist in Portland and the others will collaborate and offer me sound advise and plan. I am contending for full healing of course along with firm wisdom of the unpredictable in and outs of this disease and if the disease is only hiding for awhile then I will make sure and find this out to not be left again in India in a catastrophic way or w/it ending my life like it tried before. I'm thankful to have all of you on this forum, it has helped me significantly. I'm humbled by all the support and facts of this disease. I will keep you posted. I have many new scans this week and next.

I saw you were feeling ill this week so know that I am praying for you and that you are heavy in my thoughts ok. Enjoy the day no matter Kerstin.

Becca

[Lure2 in reply to beccafullcircle]

Hi Becca, Thank you for your kind words and all the info about how you live and eat. In my ears it sounds very good. Hope you can continue. Glad to hear your levels are steady and that you feel a lot better when on a higher level. 3.5 is a level that suits most of us I have learnt.

I feel much better now. Bless you Gina. I think of you wherever you are. Hope to hear more news from you soon.

Love from Kerstin