We do NOT have APS. We have AUTOIMMUNITY!

[TheKid]

I've been seeing a number of posts lately regarding unfortunate experiences with doctors, poor treatment protocols and severe symptomaic APS sufferers. Most of my posts focus on addressing causes and not symptoms. And I would like to once again encourage members of this forum to take a holistic approach to this very challenging condition.

First and foremost, I would like to reiterate that although we are positive for the APS anti-bodies, we do not really have just APS. What we have is systemic immune disregulation. This is why so many of us experience so many disturbing symptoms. Having APS or any other autoimmune condition means that, at best, your body remains in a constant state of inflammation. At times it may be acute inflammation, but very often it is just persistent and chronic.

A chronic inflammatory state will destroy your health. And very frequently, treating only the APS will do nothing more than keep you from clotting. And what I have found with myself, is that despite being fully, reliably anti-coagulated, I still experience a broad range of symptoms that I previously attributed to "having APS," to which a doctor will say, "But you're perfectly anti-coagulated; so you should not be symptomatic."

To a certain degree, a doctor who would say this is correct. But what he/she has failed to do is understand that Warfarin and/or Heparin (my strong drug of choice), only addresses the clotting; it does not address your overall inflammatory state. As such, you continue to endure the stress of constant chronic inflammation.

Most doctors do not bother to do a full range of labs that would get an accurate snapshot of your overall systemic health (or lack thereof). But when my doctor finally told me what tests to get to do that, what I found out was very revealing.

For one, I have adrenal issues. The constant stress of autoimmunity can place a chronic burden on the production of cortisol. This can lead to adrenal insufficiency, either at the adrenals themselves, in the pituitary or even at the hypothalamus, depending on the details of etiology. And if you add on other autoimmune diseases like many of us do (Hashi's, Lupus, Arthritis, etc.), then you are just compounding the stress. Then add on work, school, family, traffic, poor diet, etc. and you have a recipe for disaster.

So it is very important to find a doctor who is going to treat you as an entire human, not just one disease state. And I see here that many of us take the approach of trying to find a doctor who "gets it" with regard to APS. But that is only part of the puzzle. Because he may understand you need a higher INR, a different experimental med, or some other targeted therapy; but he may still fail to address your overall autoimmunity, in which case, you may end up running in place, or not making the type of health progress you hope for.

Best of health to all.

[traceylou]

A fantastic read, agree with everything I have just been to London and they are now checking for inflammatory disease what you have just said they should say, I see the specailists had another lumber, and they still keep saying in letters that some of my symptoms they cannot attribute to APS, that I do not respond to meds, nobody listens, who is it that we should see what would be there title? many thanks for listening....

[Hidden]

You nailed it!!! I wish the doc I saw the other day would read this! I am thinking of sending them one of Prof Hughes books so he can better understand but maybe I should just be sending him some more APS patients!

[jessielou]

Hi hon

Exactly, finding a doctor who acknowledges and treats the whole person is a challenge, however, just occasionally we may strike it lucky, I have a gp who is prepared to look at the whole picture and will try other options. Just hoping he doesnt leave!

Too often doctors do stick within their specialiaty and not look outside the box. We need to find ways to change that. Got a way to go me thinks!

In the words of a Gastro surgeon I once saw, "you're going to turn out to have some weird autoimmune condition" not far wrong eh???

Hoping you're well today.

take care gentle hugs love Sheena xxxxx

[SassyOne in reply to jessielou]

It's very interesting how many GP& specialists ignore or miss it and eye Dr's, surgeons, GI, urologists etc can pick up on it and nail it like that without even seeing the entire picture and all the symptoms.

[TheKid]

In terms of where you can turn, I would look for functional medicine specialists and anti-aging doctors. A functional medicine specialist will not be able to prescribe and will be limited in treatment options. But they will be able to educate you to the point that you will be able to better interview/screen potential MDs and you will be able to guide an MD through your treatment with real facts in hand.

The best option is a really clued in anti-aging MD. And I don't mean these guys who just do lipo and shoot you full of hormones. A real anti-aging doc knows all about inflammation, genetics and a ton of other things that will help you. Additionally, they will not be shy about integrating standard practices with so-called alternative ones. It's the best of both worlds.

[Hidden]

This is why I see a Neurologist D.O (Doctor of Osteopathic Medicine) they are concerned about my whole well being. Osteopathic medical school accreditation standards require training in internal medicine, obstetrics/gynecology, pediatrics, family practice, surgery, psychiatry, emergency medicine, radiology, preventive medicine and public health.

[GinaD]

Brilliant post! Thanks.

I found myself trying to communicate with a friend this past week- end. Friend asked why I was so sure APS had something to do with my SI joint issues. ". It's like a fire and gasoline. The osteoarthritis may be the root fire, but the APS activity is like throwing gasoline on that fire.". I think he got it.

Thanks for pointing up and reminding us all that autoimmunity is a system wide problem.

Gina

[kathyD64]

Thanks for posting this a very interesting read!! i too believe i have adrenal issues i am awaiting blood results taken recently from london but not sure if it will look at the adrenal gland but to me it all adds up!! fibromyalgia was the dx i was given and now i am under the gynae for really high hormone problems and i believe it is related to my flare of APS so much has been happening to my body that i can not accept is due to fibro unless doctors have the same opinion of Dr Lowe but they dont they just see it as a depressive condition i have been shouting from the roof tops all my symptoms are not remotely related to depression!! perhaps i will get answer tomorrow as my gynae review fast approaches!! kathy xx

[SassyOne]

Great post! I was just mentioning this in a post the other day. I have been going naturopathic type place that deals with the root causes of everything such as stress, pain, nutrition, allergies & sensitivities etc. although I am his only patient with APS after an explanation of what it is/similar to etc he gave me some of the best advice and treatment. I am starting to feel great for once. I have less pain, headaches, fog etc. almost everything has improved but my vision and hearing issues.

Hypnosis has done wonders for me. He has fibromyalgia patients,chronic pain and fatigue, migraine sufferers etc

Treating the body & mind is different from take this pill. The well rounded and very personal advice make a very effective treatment. I hope to continue to improve my life focusing on weight loss and nutrition and everything that affects it.

[kimmac42]

Brilliant and well said! I've been on Warfarin for a month and can now walk with 'ease' etc...but still have other symptoms...have been asked so why are you still having symptoms since starting this medication, isn't the Warfarin working? In which i reply, there are other things going on inside my body which need to be addressed as well I also am wondering why specialists don't look outside the square so to speak...

[Welshexile]

Excellent read, I can certainly relate to it. I was first diagnosed with Lupus (SLE) 22yrs ago, then added Hughes to it in 1993 and suffered complete adrenal failure in 2006 so now added Addisons to the mix. I now see one specialist for Lupus & Hughes but she also incorporates Addisons into her diagnosis and treatment options. Unfortunately the Endocrine Clinic do not do the same and like to blame any issues on Lupus & Hughes!!

[sangje]

Here here ! I agree with all the above and maybe this is something to underline more strongly in APS literature / education.

Sassy one - are you uk based ? Just wondering where if so to possibly get seen at your place.

[Annslack]

Thanks very much for this I was convinced I had already posted a reply but the couldnt find it Very interested in how people are using various approaches, wll post more another time Ann

[Leigha]

So well said. I also have adrenal fatigue, if not complete exhaustion. Take cortisone. However, that is not the subject of your report and to that end I can only agree. Am not feeling well today, but had to respond. Finding doctors who can treat us as whole is not easy, eh? Perhaps there are a few. Keep writing, you do great.

[SueLovett]

I think this discussion is so important, as if it is thought that simply thinning the blood of APS sufferers is the answer to all the symptoms and complications of this illness then the current information is woefully inadequate. Unfortunately in general this is the case

So much more research needs to be done.

Thanks for starting this topic

Sue

[SueLovett]

Your comment is well thought out and articulate thank you.

The only thing I would add is that with autoimmune diseases there are quite often no answers and certainly no cures, although we hope that this will not always be the case.

Your assertion that symptoms are treated and not the underlying illness is spot on but I think it is for the reason above.

You have prompted me to ask for tests to ascertain whether my adrenal glands are functioning. You also mention the hypothalimus my homeopath diagnosed problems in this area years ago and before I was diagnosed with APS, she also prescribed adrenal support. Interesting don't you think?

Take care x

[Hidden]

Agree totally....that is the reason to see a RHeumatologist who understands Autoimmune Disorders...and not to go

to a hematologist or any other specialist without consulting a Rheumy.....My Rheumy sees me every 90 days and does a complete blood work up...every organ....