Category Archives: Treatment

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Self-preservation and Asking for Help

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There’s a lot of expertise out there. There are a lot of specialists who spend years studying a lot of information, and there are a lot of cocky people claiming “my way is the right way.” When we admit “my expertise is not enough…I need help,” we have to navigate those waters, and it becomes confusing. The path to healing and resolution is indirect and unpaved. To make positive change happen, we need to admit our imperfection, ask for help, but avoid being taken advantage of. We have to let go of control, but maintain confidence.

I was admitted to the hospital last week, which felt good in some ways. It helped externalize some of the pressure, and allowed me to rest while I was assured that experts would help me figure out my problems. I was managing with a team, instead of alone. However, there were also lots of doctors ready to twist my situation into something it wasn’t, or tell me things about myself that were more harmful than helpful. Doctors do not have privileged access to all knowledge, and they make mistakes often. We have to remember that authorities are not deities.

When we’re talking about our own healing, no one expert is going to have all the answers we need because he/she studies concepts, not individuals. We have to enter into new ways of thinking with open minds, but don’t take anything as doctrine– keep the knowledge that applies to you, and discard the rest. And NEVER disregard your own discernment– you are the authority on your own well being, and you need to protect yourself.

You can admit that you’ve made mistakes, that you need help, and still reserve the right to say “no, this is wrong for me.” Admitting that you’ve made mistakes should make you even more confident in your ability to discern right from wrong and distinguish true from false because you’ve just done those things with huge bias. You called bullshit on yourself.

There will always be a hard-headed, over-opinionated type-A personality, trying to fix you, claiming his/her way is the only way. You are stronger. You have seen past his/her way of thinking. You have recognized human error, and you have to keep an open mind always, because every situation and every individual requires unique consideration and cumulative understanding. You are not a page in a textbook, you are not a single case study, or a google search results page. You do not deserve to be viewed as any of those things.

Furthermore, you can’t let one admission of error open you up to all others, or make you think less of yourself. Don’t ever think, “because I have this problem, all the bad things everyone says about me are true.” Humility should make you think more of yourself. You are above hubris. You are expansive. You are strong. You have seen truth, will see more truth, and that will open you up to the help and healing you need.

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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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Treatment and Tests, Continued

I’ve got some exciting brainstorming to do with you all today. As many of you generous readers know, I’ve recently acquired some funds to help with my recovery. I’ve been looking into lots of research about treatment that might help and tests that might bring be closer to diagnosis. I’m going to outline treatment I’m doing now, as well as diagnostic tools I’m planning for the next few months.

To explain some of my weakness and lightheadedness, my doctors have hypothesized that I have symptoms of Postural Orthostatic Tachycardia Syndrome. It’s a disorder of the autonomic nervous system where the heart rate and blood pressure become volatile upon standing. I can get a blood test for POTS, which would lead to a diagnosis of dysautonomia, and line me up for this treatment, which has gotten incredible results. It’s proven to help with any disorders of the autonomic nervous system, which would include Fibromyalgia and Chronic Fatigue, as well as POTS.

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For now, I take Ashwaghanda to help with energy (especially in the morning). I also take alternating hot and cold showers (it sounds miserable, but helps with circulation). I also do a lot of walks and yoga throughout the day to help with heart rate and other POTS symptoms (these are NOT the only self-treatments I do, just the ones most directly related to POTS symptoms)

In my last post, I mentioned a hydrogen breath test for SIBO (small intestinal bacterial overgrowth) and a food sensitivity test. Since I am so malnourished, these will be huge recovery tools for me. Chronic illness results in a lot of oxidative stress, which almost always leads to some kind of digestive distress. In my case, it’s been theorized that I have a bad case of Leaky Gut Syndrome, in which the lining of the gut becomes damaged, leading to food particles in the blood stream. Food particles outside of the digestive tract are recognized as intruders by white blood cells, and autoimmune symptoms follow. That means, at any time, I can develop allergies to foods (especially the “big eight” allergens) based on the state of my gut and the digestibility of the food. This food sensitivity test, based on IgG and IgA antibodies involved in leaky gut reactions, instead of the traditional IgE allergies.

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IgG and IgA food sensitivities are actually very common. If you suffer from any health problems, I would suggest looking into the BioTek testing to help rule out food sensitivities and minimize stress from those immune responses. In addition to those tests, I will use funding to get my feeding tube accurately placed in my digestive tract, and continue feeding tube treatments.

In order to help minimize bad SIBO bacteria and deal with leaky gut symptoms, I am currently following a strict diet, somewhat like the Paleo Autoimmune Protocol– basically a lot of veggies, fruits, and lean meats. I still eat eggs and some nightshade vegetables/starches (potatoes, tomatoes, and bell peppers) but cannot tolerate seeds of any kind (including berries, zucchini, etc.). The idea behind the diet is similar to the original Paleo diet, but it also aims to minimize digestive stress by eliminating foods that exacerbate gut irritation and/or may increase autoimmune symtpoms.

It’s also been suggested that I look into Mitochondrial Disease, as well as hypothyroidism and hyperthyroidism. If any of you have more knowledge about any of those diseases that may help, please share! I’d love to hear any ideas you have about any of the tests and treatments I’ve outlined.

Crowd Funding, Support, and a Lot of “Thank Yous”

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Two weeks ago, I was in a very rough place, mentally, physically, and emotionally. I felt so stuck– stuck financially, stuck physically, stuck in depression, literally stuck on my couch all the time. I was doing everything in my power to keep myself healthy and following all the advice of my doctors– STILL, I had so much pain all the time, I had no energy and no self-esteem. I didn’t have the money to progress with the medical tests recommended by new doctors, and I didn’t have the money to continue supporting the treatments I’ve already started. There were resources for healing just out of reach, but they would never be accessible to me. I keep opening the doors to new treatments, and they keep slamming shut before I’ve made it across the threshold. I spend resources on new tests that come back negative, and I’ve tried countless treatments that haven’t helped.

I blog bearing good news today. Under a week ago, I posted the story of my struggles with chronic illness on gofundme.com. In five days, I made over twice my original goal of $2,000 (some donated separately from gofundme). I am so, incredibly grateful to all the wonderful souls who offered their support and helped by donating, offering kind words, or sharing My campaign page. The amount of compassion I received was beyond amazing. Not only do I now have the resources to pursue adequate diagnosis and treatment, but I also have a huge community of supportive and understanding friends and family that I’d been taking for granted in my battle. We are rarely as alone as we think we are when we are faced with such trying situations.

Another thing my crowd fund helped with is social image, a constant struggle for the chronically ill. I’ve been sick for four years, and selectively hid my illness from friends and family because of my pride, as well as my fear of rejection. I am disabled, I can’t relate to people the way I used to, and I didn’t know how to explain it or whether I should hide it. Posting my story online and getting such a positive response was so uplifting. I no longer feel desperate or embarrassed about my lack of abilities. I no longer feel stuck. I am empowered, I am supported, and I am strong. Thank you, again, to everyone who participated in my gofundme campaign. I hope you recognize yourselves as the heroes you are.

In the next month, I plan to use funding for a hydrogen breath test for Small Intestinal Bacterial Overgrowth from Commonweath Laboratories. This is a disorder where bacteria migrate from the large intestine to the small intestine, causing intense abdominal pain, as well as food sensitivities. I also plan to get food sensitivity testing done by US BioTek Labs, Inc. I’ll post more details about these tests and my progress with diagnosis in the next few days. Please keep reading for updates on my recovery!

New Treatment for Lyme and the Benefits of Change

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It’s been awhile since I last blogged. I was gaining a more positive attitude and I felt empowered by the blog, and some work I’d started doing online. Then, I started to get sicker. A month, or so, ago, I saw a doctor in Seattle who treats Lyme and lyme-like illness. He sees a lot of Lyme similarities in my symptoms, so I decided to work with him in doing an antibiotic-herb combination treatment for Lyme and Fibromyalgia symptoms.

There are good things and bad things about new treatments. Sometimes they have good outcomes, but there are almost always side effects. Antibiotics, especially, are very rough on the body. They completely change the environment in the gut, or intestines, which can result in serious immune and digestive symptoms. Read these articles for more info:

http://www.webmd.com/cold-and-flu/news/20110824/antibiotic-overuse-may-harm-bodys-good-bacteria?page=2

http://link.springer.com/article/10.1007/BF01743360

I was already having fatigue and digestive problems, and now I’m having more/different ones from these meds. It feels like every time I get comfortable enough to make it through a “good” day or two, I get more symptoms. I have to remind myself that getting out of my comfort zone is part of healing, and I have to remember that things won’t change unless I’m open to the change. Even then, there are very few redeeming qualities about my situation, and it’s hard to “remind myself” anything positive when I spend my time in pain, angry, and unable to do the things I want to do.

On top of the new treatment for Lyme and Fibromyalgia, I’m finally moving home so that my mom can help me while I’m in recovery. This is something that’s really heavy on my heart. I loved where I was headed: the house, the school, the independence. Having to leave Salt Lake is a final proclamation of “I’m sick, and I can’t do what I want with my life.”

I don’t believe there’s a reason for everything. I don’t think there’s some ultimate purpose for my suffering, and I don’t know why I have to endure this. I don’t think people who have cancer and ALS were chosen to suffer for some unwritten greater good. I don’t know why the world stopped me then I was happy and productive. However, I do believe that people can create “greater purpose.” I also believe that people who make it through trials come out better and stronger on the other end.
Healing takes time, endurance, knowledge, and patience. I know that a miracle cure isn’t going to come out of the sky and save me. From what I’ve experienced, people who keep their feet in the door, open to new knowledge and willing to sacrifice, are the ones that find what they’re looking for.