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!
-BH
A thousand questions
Graham Hughes' July blog 2013
