How simple alternative medicines have helped my quality of life
Heat, probiotics, and vitamin D supplements have improved my symptoms
Note: This column describes the author’s own experiences with some alternative treatments. Not everyone will have the same response to them. Consult your doctor before starting or stopping a therapy.
I’ve always found alternative medicine intriguing. It’s wild how some of these treatments that aren’t regulated or “medically proven” can still help a patient, in sometimes large ways. But I never expected alternative medicine, which as defined by the U.S. Food and Drug Administration might include probiotics and supplements, to become treatments I applied to myself.
I need first to mention that any type of new treatments, supplements, or activities can affect your health and should always be discussed with your medical team. I discussed everything I’m going to talk about with my team, and they approved it as safe for me to try.
In September 2020, I spent almost two months in intensive care, nearly dying from kidney failure, liver failure, and hemolytic anemia. I was eventually diagnosed with atypical hemolytic uremic syndrome (aHUS). Thankfully, there’s a chemotherapy medication, Soliris (eculizumab), that I take to treat this rare disease. But because I had to wait so long to receive medical care, permanent damage had been done.
I was able to come off of hemodialysis after five months, but I still deal with hypertension, swelling, and pain, as well as my comorbidities: May-Thurner syndrome, stage 4 kidney disease, a liver hematoma, medical PTSD, lupus symptoms (I have systemic lupus erythematosus, the most common type), and typical fatigue and decreased stamina from aHUS.
Most debilitating of all are the side effects I experience from the immunosuppressant Soliris, including hair loss, fatigue, bone pain, arm and leg pain, difficulty moving, loss of strength, nausea, and headaches. For some, these side effects can be much worse.
I also have issues with pain and swelling on my left side, caused by May-Thurner. My left leg is in constant pain, and my blood pressure is much higher on my left side than on my right. This imbalance causes lightheaded spells, migraines, and chest pain. Standard medicine has given me little to no relief for these; in fact, taking so many medications is what’s causing my May-Thurner syndrome, as well as my stomach problems and weight gain.
So I turned to other potential help, some seemingly obvious. For instance, I experience shivering, icy hands, chattering teeth, and the inability to get warm, which I’ve been told are side effects of being anemic and on Soliris. I’m constantly seeking anything that’ll warm me up. That’s led me to realize that heat also eases a lot of my muscle, joint, and bone pain. Dry saunas, thermal body wraps, heating pads and blankets, hot baths and showers, and hot tubs offer me temporary relief. Thermal body wraps from spas give me the longest pain relief.
I also deal daily with constant bubbling, grumbling, and other noises that sound like a small, angry gremlin ready to climb out of my stomach. After hunting through an aHUS Facebook group, I decided to give probiotics a try. After using them for only a couple of weeks, a lot of my stomach issues lessened or disappeared altogether.
The probiotics have also brought me weight loss. I’d tried everything possible to lose the weight my medications have put on me over the past two years, but nothing had worked. But after five to six weeks of probiotics, I noticed my weight was one to two pounds lower at each doctor appointment. I initially didn’t think much of this pattern, as my weight might fluctuate up to five pounds daily. But I’ve been consistently losing weight since the probiotics, and I’m now down 36 pounds in about four and a half months.
Vitamin supplements have been another perhaps unconventional treatment that’s made a difference to me. I’d never been big on them before because I felt I was getting most vitamins and nutrients from foods. But I spoke with my nephrologist about always being tired and having brain fog, a racing mind, and difficulty focusing. He tested my vitamin D levels, which we discovered were very low. With that, I started a 50,000 IU dose once a week.
That made a huge difference. Most of my brain fog went away, I had a much easier time focusing on tasks, and I was less tired. I was able to take that supplement for six months before it started to have a negative effect on my kidney function. But my time on it was great.
My medical journey is far from over, but these technically alternative medicines have played a huge role in improving my quality of life. I’ll continue with everything that’s helping me now and will continue seeking help through other unconventional treatments.
Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.
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