Tag Archives: treatment

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Treatment Update #3

Hello all! I’ve been a little lazy with blog updates lately, and I’ve missed you, my lovely, lovely readers. Today, I want to share some treatment updates.

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First of all, some exciting news. I got into the neurology clinic at the University of Utah! This means I’ll finally be evaluated for things like multiple sclerosis and dysautonomia. It’s proven extremely difficult for me to be referred and accepted into a neuro clinic, so I’m considering this a pretty huge feat. Hopefully it will mean some good things in terms of healing and diagnosis.

I’m going to stop my treatment for Lyme disease. I explain that treatment more in this post. I started with antibiotics, and quickly realized that was an extremely bad idea, considering my digestive health. Antibiotics have hugely detrimental effects on gut health and completely wipe out the good flora in the digestive tract. I am now taking Banderol and Samento, which are herbs that have been shown to be equally as effective as antibiotics in Lyme treatment. My Lyme test is still indeterminate, and I haven’t seen any positive results from the Banderol and Samento, so I’ve decided to pursue new avenues of treatment, namely restoring my digestive health.

I’m also working on finding the right balance of bacteria in my gut. Chronic antibiotic use and Fibromyalgia can both lead to SIBO, and my gut symptoms are definitely suggestive of bacterial overgrowth. I wasn’t able to do the hydrogen breath test I’d mentioned previously, because it involves drinking a solution that contains lactose (I have a dairy sensitivity), but my naturopath is helping me treat for SIBO anyway. We both agree that my symptoms and medical history suggest SIBO, probably caused by fibromyalgia and exacerbated by long-term antibiotics.

To wipe out bad bacteria, I will take Candibactin, a combination of antimicrobial herbs. In addition, I will continue taking VSL #3 and Prescript Assist, which are both probiotics that will help maintain a good population of beneficial gut flora during SIBO treatment. The problem is, overgrowth can happen with both good and bad bacteria, so there’s a lot of guesswork involved in repopulating the gut. Also, I’m still following my anti-inflammatory diet plan, similar to the AIP; I also incorporate some concepts from the GAPS diet.

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Additionally, I take L-glutamine, which helps repair the lining of the intestines, especially in the presence of long-term stress. I also drink aloe vera, which is a general digestive-soother, but also helps with acid reflux. With meals, I take GI-encap, which is a blend of licorice, aloe vera, marshmallow, and slippery elm. Finally, I take ginger, chamomile, and peppermint to help calm my stomach and stimulate digestion.

I’ve also recently come across two fairly recent studies in Fibromyalgia and Chronic Fatigue Syndrome that have had some incredible results.

This New Scientist article talks about a cancer drug, Rituximab, that had some unexpectedly positive results on chronic fatigue sufferers. Rituximab wipes out B-cells, which stimulate the production of antibodies. This could suggest a more autoimmune component to Chronic Fatigue than previous research would suggest. It will take some time for Rituximab to become usable (and affordable) for CFS sufferers, but I will definitely be on the waiting list!

The second study deals with vagus nerve stimulation. The vagus nerve regulates the parasympathetic nervous system, which is directly connected to stress and immune responses. In fibromyalgia, the vagus nerve can become less responsive , or “undertoned,” which leads to slower digestion and irregular heartrate, as well as impaired immune response through parasympathetic nerve pathways. Lots of studies have been done with vagus nerve stimulation on fibromyalgia sufferers, but recently, people have been using TENS units or Electric Muscle Stimulation to stimulate the vagus nerve through the inner ear. This is still new research, but something I plan to cautiously try at home.

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That’s all for now, my dears. I hope you’re all enjoying some good weekend hooplah.

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Birthday Blues

Yesterday was my 22nd birthday. It was a hard day. Around a year ago, this time of year, my symptoms were starting to worsen. I was enrolling for school, but nervous about how much I was going to be able to handle. I had just finished my summer job, and was tired from my schedule, even though I was only working afternoons. I kept telling myself “this is temporary…it’s a fibromyalgia flare…it will go away and school will be just like it was last year.”

August 2014
August 2014

My symptoms kept getting worse, and the life I’d known before started to deteriorate. I could study for an exam all days, and be too weak the morning of the test to go to class. I kept making plans with friends and canceling because I didn’t have enough energy. I started spending more of my time seeing doctors and resting. I told myself “I’ll just take some time to figure out what’s wrong…by next year at this time, I’ll be recovering.” Of course, I had no idea if I’d actually be recovering, but it was comforting to think there would be an end to the symptoms and lack of control.

It’s been getting closer and closer to the “deadline” I set last August, and my symptoms have been getting worse. I feel like I have so few abilities, and I’m hitting a lot of dead ends in my medical tests. This week, pain and weakness were especially bad, and that sent me into a downward emotional spiral. It’s not fair that I couldn’t make plans for my birthday like a “normal” 22-year-old, it’s not fair that I can’t go back to school, it’s not fair that I’m always in pain and none of my doctors have any answers.

None of it is fair, and it’s not going to be fair. I can’t bargain with the illness, and I can’t decide that if I will things to change, they will actually change. I have limited choices, and I have to accept that for now. Happiness is mostly an internal state. I don’t think it goes entirely unmediated by external factors, but I think we’ll always wish for better circumstances no matter what our current situations are. So I decided to let myself be angry, and have a birthday in pain. I allowed the situation to be as it was. I still appreciated small things, and I grieved for the things I couldn’t have. I wasn’t able to have a big gathering, or go out with friends. I settled for a movie with my boyfriend, and even that was pretty exhausting for me. I still ended the day happier than I’d started it, and I think that’s a big step in healing.

Lesson learned: false deadlines for undesirable situations don’t help. They give us false hope, and good social defenses, but eventually, the scaffolding will start to fall, and we’ll have to reexamine everything we’d once considered comforting and true. Being honest and practical about pain or trauma is the only way to get through it. So, from now on, I’ll be honest with myself, and appreciate as much of my situation as I’m able. I’ll keep looking for answers, but I’ll stop feeding myself false comfort and motivation. I will be ambitious for healing with no pretense.

On a different note, my gastroenterologist has decided to start some new stomach medication, and my feeding tube is set to be moved the first week of September. I had some abnormal thyroid tests, so I started thyroid medication today. Finally, I have a referral to see a neurologist to explore some of my neuropathic pain symptoms, and get an MRI. Hopefully some of these new therapies will lead to new avenues for healing. Thank you, again, to those of you who provided the funding for my new tests and therapies. My research will keep me moving forward, and I plan to keep trying new strategies until I find more comfort in my mind and body.

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