Welcome to Act 4 aka my 2016. In late December 2015 I was diagnosed with Dengue Fever and was told that NOTHING could be done. Literally. How depressing right? I would just have to “work through it” and “heal over time” or maybe not heal at all. I had even asked if there was anything I could do to boost my immune system and was told no with a little laugh. I so wish you could have seen my facial expressions at that time. I’m not known for my stoic nature so you can imagine some pretty fun glares and overly unimpressed eyebrow raises. I didn’t really like hearing those words but I was exhausted and delirious from the virus which was wrecking complete havoc on my brain and my immune system. I took that answer for about a month and then realized that I couldn’t continue to sleep from 6PM to 6AM. I didn’t eat dinner. I drove home, showered (barely) and made my way to the couch where I instantly fell asleep. I was weak. So weak that I had to take several breaks walking up the stairs to my 3rd floor apartment. In the shower I would squat so that I wouldn’t pass out. Washing my hair was all that I could do so I would alternate every other night, shampoo one night, conditioner the next. I washed my face multiple times because I couldn’t remember if I had. All in all, I wasn’t in good shape but like I mentioned my brain was inflamed from the virus. I couldn’t comprehend that something was wrong. It wasn’t until mid January that I really thought “hmmmm, it sure would be nice if I wasn’t sleeping so much”. I mentioned this to a coworker and she suggested I see the acupuncturist that I had visited the year before when I needed help with period pain. (Side note, this woman cured my back pain in 3 sessions!!! I’m a huge fan of her work!) I think back to that first appointment in 2016 with my acupuncturist and it brings me so much joy, so much peace. I still think she is a mind reader/wizard of sorts… She walks in, grabs my wrist to listen to my heart and instantly says “you are fighting a virus”. It wasn’t a question… What??? So powerful! She then asks me a few more questions about night sweats and other symptoms I was experiencing. How did she know??? It still baffles me when I think about it! This woman plain and simple saved my life. Not trying to be dramatic. She seriously saved my life. I scared to think of where I’d be if I hadn’t visited her. So she tells me I need to see a doctor. That she can certainly help supplement with acupuncture but what I’m battling needs the help of a MD. Obviously I haven’t had a positive history with previous doctor visits and told her I wasn’t a fan. She assured me she had someone great. Someone that followed western medicine and prescribed medication when needed but also used herbal supplements and challenged status quo. I thought what the heck, give it a go… plus my brain wasn’t in any state to argue. So I called and they said it would be over a one month wait! What??? I couldn’t wait that long so I asked to be called if there were any cancellations. As luck would have it I was called within the hour and had an appointment within a week! It was like the universe was aligning to help me because it knew I was a hot mess. First appointment I was super nervous. Thinking here goes another appointment where the doctor doesn’t listen, jumps to conclusions and prescribes me something that won’t help and ultimately I’ll stop taking. She proved me wrong in the best way possible. She listened intently as did her nurse. She asked the right questions and really captured the entire picture that was my health. It was amazing! She ran a wide variety of labs (which had never been done before) including a viral panel.
So what was I experiencing?
- Fatigue – but at this point I wouldn’t label it as fatigue I’d call it more like debilitating exhaustion (anyone else know what I’m talking about?), can’t lift my leg high enough to climb the stairs, can’t wash my hair, can’t cook dinner, can’t. do. anything. fatigue.
- Horrendous night sweats – yep, still soaking at least one shirt a night
- Fever – low grade and constant (my temperature usually ran around 97 degrees F but during this time it would stay around 99.2 degrees F with occasional spikes in the 100s)
- Swollen lymph nodes
- Ear pain
- Joint pain
- Body aches
- Tingling and numbness in my fingers and arms at times
- I had the strangest sensation – at night as I was trying to sleep my vision would go blurry and at times my legs would start to shake. It was incredibly scary. At times I wondered if I was having a seizure.
- Restless jumpy legs at night – it would often wake me up just after I had fallen asleep
- Waking up multiple times a night
- Diarrhea – multiple times a day, everyday
- Weight loss
- The WORST memory – I would ask a question only to ask it again not even a minute later (no, it wasn’t selective hearing I promise)
- Brain fog
- Zero concentration
- Ringing in the ears – talk about a distraction
- Heart palpitations
- Hair loss
- Shortness of breath
- Blurry vision
- Acne – rarely had a blemish before all of this started
Yikes, writing it down makes me pause for a moment. I think about all of symptoms that I’ve been able to check off the list and wow, what a feeling! Anyway, back to it. So, I returned a few weeks later when the test results came back in. I tested positive for:
- Epstein Barr Virus (which I already knew was hiding out in my body like the vile virus that it is)
- Parvo – no, it isn’t something that only dogs get, although many had a great laugh at my expense – it’s ok I can handle it 😉
- White blood cell count was a little too low (Dengue does that apparently)
- Vitamin D deficiency
- Zinc deficiency
- Zero progesterone, yes zero
- High testosterone
- High estrogen
This woman was just what I needed in that moment. She had me start taking supplements (can’t wait to tell you all about how they’ve helped me personally), an antiviral and birth control (as I had an on again off again relationship with it and at the time was off). She also provided a glucose meter so that I could start monitoring my blood sugar. For the first month I took the “cheap antiviral” with no luck. She then prescribed the “expensive one” and what do you know… it started to work. I won’t dive into the deep end talking about the cost of prescriptions… but I will say that without insurance the bill would have been over $1,100. Something that I would not have been able to afford in addition to the supplements, doctor visits, labs and $100 birth control bill. About the same time that I started the new and effective antiviral I also had my blood drawn for a food sensitivity test. That was and still is the coolest test I’ve done! It came back with a list of “5 do not even look at foods” (kidding of course, I just can’t eat them), and a much longer list of foods to avoid. I had a strict plan to follow. Sorry for the teaser but I’ll be dedicating a post to this test and all of the nitty gritty details. I will say that I was an absolute joy to be around while I was restricted to eating plain white rice and plain carrots for 7 days straight. I wanted all the butter and milk! I completely changed how I ate and went totally vegan, gluten free, soy free, corn free, sugar free (and I mean added sugar, I know there are natural sugars in fruits and vegetables, I still had to avoid the ones with high sugar content – ugh I just wanted some honey to sweeten my oatmeal!) and avoided every item on my “do not eat” list for almost 6 months. Talk about an overhaul to the system. But so worth it – come back for the post on food sensitivities!
So by the end of the first month on the good stuff I started taking a pilates class. I needed some low impact, low heart rate exercise and it fit the bill. At first, it was challenging but as I grew stronger physically from the pilates and the more the antiviral worked it’s magic and the elimination diet cleaned up my bowel movements I began to see some real gains in my health. I was starting to feel something that I hadn’t felt in several years. Hope. It was nice, but in my gut I knew there was something more. But I kept that feeling locked up and hoped for the best. However, I was not prepared for what happened in the middle of the third month on the antiviral (which was my last month on antivirals as I couldn’t be on them longer than 3 months). My whole world of hope came crashing down. My fever returned, my lymph nodes started to swell and I could barely make it through a pilates class without being extremely exhausted and/or blacking out. I wish I could say that I was strong and resilient and it didn’t bother me that much. But honestly, I was crushed. I had so hoped that this was my “silver bullet”. My golden ticket out of this hell hole. I waited over a month and a half to return to my doctor. Determined that it wasn’t real or just a little phase. Since I had stopped the antiviral and couldn’t continue taking for extended periods of time she gave me another option. Low dose naltrexone. Now if you just google Naltrexone (like my mom did) you’ll see that it’s typically prescribed for addictions. My mom and I had a great conversation that started with “now honey, do you have a problem we should talk about?” She was semi joking but we got it all straightened out. However, if you add the low dose to the front then you’ll see that it has been prescribed by medical professionals to reduce symptoms of chronic disease and autoimmune diseases and even cancer. I started taking it and noticed that a few of my symptoms alleviated but something was still off. Still, I gave it a go for a few months. Until I took a trip to San Francisco with my parents.
I was too fatigued on the trip to walk around those hills all day, I had a high grade fever, had to literally RUN back to the hotel after enjoying an ice cream sundae at Ghiradelli (the gut was churning and needed a toilet ASAP) and just felt like total crap. Back to the doctor I go. She ran a MRI, offered to refer me to a neurologist and infectious disease specialist. I wasted my money on the neurologist and skipped the infectious disease specialist. The MRI, that was to confirm/deny the presence of MS, came up clean. Phew! And so back to the acupuncturist I went. This time she had a different doctor, in a different state that specialized in more “special” cases (her words) like mine. While I can’t wait to share all the details of my fall 2016 this post is already incredibly long so I’m going to hold off and save the rest for Act 5. I promise you that this visit/treatment plan were way out side of my comfort zone… in many ways. Can’t wait to share more! I wish you health and peace!
Disclaimer: The content of this site is purely my opinion and personal experience. I am not a doctor or healthcare professional. Nothing in this post and/or site is mean to treat, diagnose, cure or prevent disease. You should consult with your medical doctor or qualified licensed healthcare professional before making any changes to your healthcare regime.