Posted 4/9/2016 5:30 PM (GMT -7)
My heart goes out to you and your family!
I understand your plight, as I went through the same thing with my husband. Unfortunately we didn't get to experience our happily ever after. In 2010, I was diagnosed with Behcet's Disease. After years of symptoms and finally one brutal hospitalization, I was put in touch with an amazing medical team. After my diagnosis, and after my pain and symptoms became more intense, I imagine that I was a bit of a nightmare to live with- going through all the steps of grief at the same time, or so it would seem. My husband at the time never went to a doctor's visit or stayed in the hospital with me, and sort of disappeared into himself when I became sick. We separated 6 months post diagnosis, and it was heartbreaking. I am so happy to hear that you and your wife are still in love and are there for each other, and I hope that things get better for your wife in the near future - assuming she sticks with a medical plan and sees her medical team regularly.
I tried all sorts of medications and holistic treatments to treat my Behcet's symptoms: Humira, Imuran, CellCept, Prednisone, Remicade, colchicine, Lysine, astragulus, and many more. I am now on Remicade, and have been for 5 years, and it really has given me my life back,albeit a few hiccups here and there. In February of 2015, I was initially diagnosed with drug-induced Lupus, and my new Rheumatologist immediately took me off of Remicade, as he feared it was the culprit. Within weeks, all of my symptoms came back, much worse, and in addition to new Lupus symptoms. I was finally sent to a Behcet's specialist in Oregon, who did all the appropriate testing and diagnosed me with both Behcet's and true SLE. I was put back on Remicade and also plaquenil, but had to stop the plaquenil within a month, due to an adverse systemic reaction. This is very rare, however, so if plaquenil has been prescribed, please encourage your wife to take it, as it has helped so many people.
In regards to holistic treatments, I was put in touch with a Natureopath/Oncologist, who is absolutely brilliant. She ran an entire blood panel on me, testing things I didn't even know existed. I determined what my allergies were, and made the appropriate changes to my diet, which has helped tremendously. As with many of us, I also found out that I was severely vitamin D deficient, and was started on a supplement, in addition to a few others. I learned something very important from these tests, something that I think may really help your wife. I'm not entirely sure what the picture would like, since she has had her thyroid removed, but I think some thyroid related blood tests could really help:
Depending which Thyroid hormone is more dominate in your immune system, there are certain items that can stimulate the hormone, activate and aggravate your immune system, and create a flare. There is also evidence that suggests that Lupus patients tend to be dominate in both Th1 and Th2, which means that there is a laundry list of things that one should avoid.
Throughout my research, I determined that regardless of what your levels are, if you have an autoimmune disease, you should be taking vitamin D, Omega-3 and Glutathione (which I do not currently take).
Th1 Dominant: Avoid Astragalus, Garlic, Echinacea, Lemon Balm, Licorice Root, and Vitamin C.
Th2 Dominant: Avoid coffee, green tea, grapeseed extract, Lycopene, Pycogenol, Reversatrol
Both the TH1 and TH2 Levels should be Balanced. Therefore, if a patient is Th1 dominant, they should AVOID Th1 stimulants, and may TAKE Th2 stimulants (vice versa). It sounds confusing, but that's what the science says.
Source: My physicians, Dr. Anne Hyucke and Dr. Cailin Sibley AND:
"Help, My Body Is Killing Me: Solving The Connections Of Autoimmune Disease To Thyroid Problems, Fibromyalgia, Infertility, Anxiety, Depression, Add/Adhd And More" by Dr. Kevin Conners
I don't know if anything I have offered will help, but I truly hope that your wife finds the right path and that peace and happiness will be bestowed upon your family for a lifetime.
All the Best.
Behcet's- 2010 & SLE- 2015
Remicade 600 mg IV (Q4 Weeks); Prednisone (5mg); Colchicine (0.6mg);
Clonidine (0.1mg- for facial flushing); Aldactone (100mg- SLE acne & hair loss) Lexapro (20mg); Klonopin (1mg); Morphine SR (30mg)
"I don't want to Survive, I want to Live." - Solomon Northrup