Curiosity may have killed the cat, but it could save some of us!

My wife and I are new to the Hughes Syndrome community. This is actually our first blog! I couldn’t help myself, so here goes.

A little background history before we begin: My wife has been diagnosed with Hughes Syndrome (APS) since 2011. It was probably only by chance that she ended up getting the diagnosis because the Doctors here are very uninformed, misguided, deaf, and stubborn. There is a deep family history of Rheumatoid Arthritis in her matriarchal side of the family. There is also a history of bloodclots from birth control, preeclampsia during one of 3 pregnancies, and a couple of sicknesses that required extended use of antibiotics as a kid.. It has been a long journey to this point and we are nowhere near the finish line. My hope is to share all that I have learned in my search for an answer and as I attempt to “fix it” through whatever means possible. I am not a scientist, nor am I a Doctor. I learn by trial and error, and not giving up. Most here probably have fought the long battle, but there is still one final push. Keep going!

It is with great suspicion that involvement with Hughes Syndrome began at some point between the years of 2004-2006. That is the timeframe that my wife started noticing small differences in her body, namely fluid retention after a few drinks. A small note on the drinks is that they were both malts (Mike’s Hard Lemonade, and Smirnoff Ice). She would wake up the next morning and notice her pants wouldn’t fit after a few of those the night before. **I am mentioning this now because I believe the cause is rooted in a food allergy/ allergies that have started a chain reaction, or “trigger”, in the immune system that led to Hughes Syndrome. Before this all began she was a size 5. We became officially married in Aug. 2006 while on leave during one of my military deployments.

The years of 2006-2007 were fairly normal aside from a few issues in the latter. In the fall of 2007 she experienced some heavy water retention. She rapidly added about 10lbs., it was so much that we had to get new clothes for her. We went to see her primary care physician who quickly dismissed it as a poor diet. The Doctor did however prescribe a diuretic, blood pressure pills, and some other kind of heart pill because her beats were abnormally fast and skipping some. Soon after, in the spring time as we were walking to get the kids at school, she started experiencing a pain in her neck which quickly moved to the right side of her head. The pain was the most intense pain she has felt in her life (at that point she had given birth to 3 healthy boys naturally). She then started seeing what she described as red spots, so many red spots that it completely blocked her sight. I caught her on the way to the ground and called an ambulance for help. The paramedics came and she started coming around. They suspected it was heat related and sent us on our way. We went straight home so she could go to bed and rest for a while. To our amazement later that evening, she made her way downstairs experiencing facial paralysis on one side, eyes that could not produce any tears, the same head pain on the right side. I rushed her into the hospital and “tried” to get some help. They played diagnosis roulette or something and figured she had “Bell’s Palsy”. The treatment for the dry eyes and whatnot lasted for a while and nothing else that is significant to report happened that year. The fluid retention continued and by 2008 she was pushing a size 12.

From 2008-2010 we noticed more progression in her health problems. The highlights were: a growing intolerance to heat, sunlight, and exercise. We started adjusting by not doing as much as we had been. Also, joint pain (especially in the hands, hips, elbows, and ankles), back pain, and shoulder pains started to develop and become more frequent. In 2008, we suspect that there was an early miscarriage while we were moving. It should be noted that this was a time of extreme stress (looming deployment to Afghanistan, and extra stressful events with a house we lived in briefly). In 2009, I came back from a deployment to Afghanistan and my wife and our middle son developed something that resembled a Fifth’s Disease rash. Moving on into 2010, there were 2 more serious events that were called a TIA. One was while I was away in training, and another happened shortly after. Both events left her with facial nerve damage that still has residual effects. We started noticing more symptoms (thought to be Multiple Sclerosis) and went to see specialists at the University Hospital in Louisville, KY. We started at the Neurologist, who was on a roll, but died before our follow-up appointment. The replacement wasn’t as knowledgeable and referred us to a Rheumatologist. After about a year of appointments she was finally diagnosed with Hughes Syndrome in early 2011. We began treating it with low dose aspirin. At that time she was rolling into a size 16 (still suspecting fluid retention).

In 2011, the symptoms continued and got worse. Had some heart issues and got a diagnosis of Inappropriate Sinus Tachycardia. That condition is being treated by Propanolol now. Tried one of the fat loss diets with some success; she dropped 21 pounds in the full course (the HCG diet is not recommended, it was harsh!).

The years 2012 and 2013 have been a time of research and experiments. We experimented with different foods and noticed some reactions. The main reactive foods were breads and sugars. We tried a few times to cut one or the other out of the diet for a while with a lot of success. But still, the success wasn’t good enough. She is currently about a size 18.

As I continue to learn, I have started reading a lot of things related to Hughes Syndrome, Fluid Retention, and other issues. I have come to a point where I noticed a link. It seems Leaky Gut Syndrome could be connected to many autoimmune diseases. The link, when broken down in layman’s terms, sounds reasonable. It was explained that Leaky Gut Syndrome is like a cut that will not heal because it is continuously being reopened. Basically, something throws the system off and the bacteria that break down the food inside you are no longer balanced. That cause can be as easy as a food allergy to something you eat. There are a few other causes, but the allergy is the most common. The symptoms resemble a lot of the autoimmune diseases out there. I suspect that if a person has the genetics, or susceptibility to, an autoimmune disease that Leaky Gut Syndrome can be the trigger of said disease. I challenge you to at least read the first 11 chapters of “The Waterfall Diet” by Linda Lazarides. Even if you don’t attempt the diet, you can possibly see what I am seeing in regards to this condition being a trigger of Hughes Syndrome or any other autoimmune disease for that matter. It is all about the chain reactions in the body. It explains how the immune system becomes involved and can quickly get out of control trying to fight one problem, and then it leads into another problem. It is by no means a cure, but I hope it could be a way to get everyone to a point that they can control the symptoms and have a better quality of life.

I will be starting the diet with her tomorrow (because it is the fair thing to do) and we will periodically update every 2 weeks. I am keeping a good record of how things go and I hope to report massive improvement. Until then, keep fighting the good fight!


12 Replies

  • Wow! Well thank you for writing such a comprehensive history and first Blog! Welcome to our Forum too. It is well known that Hughes can come as a trio and that Autoimmune Thyroid and Sjogrens Syndrome can join in. Celiac Disease is also linked into the Thyroid issues so its common for many Hughes patients to have Gluten Intolerance if not CD. Cutting out Gluten completely is recommended by Prof Hughes.

    It is also common to find that once you have one autoimmune condition others will follow on so good diagnosis is really important.

    I would strongly advise that you find an APS specific Doctor who knows how to treat the condition and to test for other related conditions rather than trying to treat it yourself.

    Good Luck with the diet!

  • Hi, a well written history and a very interesting link. I too started off with one auto immune disease (lupus) now also have Hughes and I suspect a few more that are yet undiagnosed. I will be following your posts with great interest. I feel that consultants have no time to discuss the possible links with symptoms and the gut. I send my best wishes to your wife xxx

  • Welcome to this forum, it's a good place to be!! .... And looking forward to your updates, you wife sounds a very lucky lady to have such a supportive husband as you! Sarah x

  • Hi there and welcome, most with autoimmune including lots on here are intolerant to gluten, this can be the case without having full on ceoliac disease in fact here is a paper: Also as Professor Hughes often states and actually write, Hughes Syndrome very frequently appears as a trio of disease with Thyroid disease an also Sjogrens. I have these there, plus Lupus and Psoriatic Arthropathy. Unforutnatley thyroid issues are often missed, and these often have undetected adrenal issues also, this causes awful fluid retention. Since treating my thryoid and going gluten free I have dropped weight and also lost the extreme water retention. Please be aware that thyroid testing does not always bring an accurate result, It is supposed to be looked at on physical symptoms not just the standard tests, plus typical dosing, that does not suit everybody:

    Thanks for your blog. Mary F x

  • You got there before me MaryF!!

  • Ha Ha, was just thinking of you the other day, how is your sister, do PM me if you want xx Not sure whether I am an internet sleuth or a dragon, or perhaps I am both! M x

  • And you should join Thyroid UK healthunlocked community too because there are many on there with Autoimmune Thyroid disease that have gone full circle back to gut problems as the source of their problems. It's all very complex but conversely very simple too. Many ask the question What came first? It is staggering how many people with thyroid disease have 'associated' vitamin and mineral deficiencies such as vitamin D, folates, B12 and ferritin, calcium. That's the common ones anyway and goodness knows what others. This is often down to malabsorption in the gut and can account for problems absorbing their thyroid medication too. Add to the mix that people with autoimmune thyroid problems often have other autoimmune conditions like Pernicious Anemia, Hughes, Rheumatoid arthritis, diabetes, Sjogrens Stndrome...... And the symptoms often overlap. Others get diagnosed with MS and some MS sufferers through self education find they have been misdiagnosed and really have Pernicious Aneamia!

    As if that isn't enough, many of these conditions are treated by different disciplines by the medical community. Do they talk to each other? Do they join up the dots? We all know the answers to those questions.

    On Thyroid UK often people have found it is the bigger picture that gets them on the road to better health - gluten free, optimising vitamins and minerals, replacing the standard thyroid medication with T3 or natural dedicated thyroid medication. Most of all they get better when they realise that the medical professions reliance on a disgracefully flawed blood testing regime is making them either go undiagnosed or mistreated.

    If you haven't done so already, I would strongly urge you to get her a full thyroid panel (her fluid retention could well be myxedema) and check for B12 deficiency (or the autoimmune cause of deficiency Pernicious Anemia). Both cause neurological symptoms.

    Dr Myhill's website is a fantastic source of information about much of this and she places great emphasis on the links with leaky gut.

    Good luck with your journey helping your wife to better health.

  • I had the same problems as your wife with regard to the water retention & bloating, this started in my teens.

    My jeans would fit in the morn but later in the day i would have a nappy pin holding them together !

    It got so bad that I had to wear maternity wear, my wieght went up & down like a yo yo.

    The doctor would not believe my plyt so I had no choice than to struggle on. Cronic lethargy kicked in & i was labbled with ME.

    I became sensitive to heat & light with a sluggish immune system playing it's part due to recurrent bouts of flu.

    My dad & brothers were all bakers so bread, cakes were always on offer.

    With regard the M.E I sort self help clinics & payed a fare price to do so, I even stayed in a clinic for two weeks near Oxford.

    This clinic was well clued upon allergy, toxins, leaky gut & candida ! I was out in the country with no toxins self grown food & staying in a wooden house with out carpet....they had thought of every sprays or perfume were allowed.

    Yes 'many' of us have allergy, candida, leaky gut do to the chemicals & processing of our foods today......I started to get gut & bowel problems.

    I went to the Royal Homoeopathic Hospital in London.....yes in deed I have allergy problems.

    I went on the most horrendous elimination diets kept diaries of what I ate......I was told to only drink bottled water & food was potatoe, carrots & lamb for breakfast, dinner & tea.

    I was given desensitising injections & I started to feel better but was unable to finish the treatment due to the dreakdown of my marriage.....I coud no longer get to London.

    I carried on with watching what I ate, bowel cleansing, candida treatments......I even had colonic irrigation........'I was still very ill' like your wife suspected M S.

    I went on to find I had thyroid , parathyroid , fibro myalgia, arthritus, hiatus hernia, diverticulitis.....the list is endless.....& now they are looking for further disease.

    Now you will find many a book out there on the shelves...Fibro diet...Cancer....Candida.....

    Arthritis books all claiming cures through diet.....dont get me wrong we are what we it.

    I feel we do have to read labels if poss eat organic...but in reality it is not cheap & not all can afford do all the supplements that are recommended.

    I have spent thousands of pounds in the past trying to make some headway....yes food...

    coliac.all play a part.....but your wife now has to take good care of herself Hughs is not to be messed with APS has given good advice in her mailing..

    I shall look out for you future postings with great interest. Jillymo

  • Well written blog! And yes, much of what you wrote certainly resonates with me. I'm in West Virginia and I had to go out of state to Cinncy for my diagnosis.

    I will go to Amazon right now and check out "The Waterfall Diet." In recompense, may I recommend In the "Kingdom of the Sick " which does a great job of detailing procedural mind sets among med professionals and lay persons which assign blame for chronic conditions to the patient. I found the book liberating.

    Also ditto about the theory of leaky gut being a first cause. I use the strobe light metaphor to describe how this or that food, activity or time in the diurnal cycle is supposed to regulate the immune system turning it first on, then off. Monitering the activities of billions of cells in the body is a biologically expensive job. So we have a short cut. Turn the immune system on and off and moniter changes --like ignoring all those rocks in the cave as the strobe light cuts in and out. But when one rock begins to move you see it is actually a bear and you reach for the rifle. except with leaky gut syndrome your immune strobe gets stuck in the On position and bad things result.

    Glad you've gotten this far. Good luck and keep plugging!


  • Thanks to everyone for all of the support!! I will keep you posted!

  • Hi BK2006, any updates from a year ago on your wife? I'm just starting this mess with FActorV, Lupus Anticoagulant, and now low platelets. I'm thinking this is all food allergy related.

  • Hi brannanp,

    First of all; Can I ask if you are diagnosed APS? Who diagnosed you and where are you from?

    I have Lupus Anticoagulant like you (obviously you must have APS then) and LA is an anticoagulant to detect APS.( the others are ACL, IgG and IgM and Beta2Glycoprotein1) Lupus Anticoagulant it not Lupus.

    Factor V leiden is an inherited blooddisorder. Several of us with APS have Factor V leiden.

    I suspect you have APS as you have been tested positive to Lupus Anticoagulant and APS is no food allergy It is a blood disorder and a Rheumatical illness like Lupus. The plateletchanges can be caused by APS.

    Could you please come back and inform us a little more about your own history We are no doctors only try to help eachother.

    Best wishes from Kerstin in Stockholm

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