Well here is the next installment of the intro to my medical mystery tour. I know the first one was long and this one may very well be long too. I'm hoping that even with all of the long details that it may help someone, anyone struggling with their own health find some answers or direction. So moving on from August 2015..
I went to meet my new allergy specialist at UW Medicine and see what he had to say. We spent well over an hour discussing how all of this started, my experience leading up to seeing him. I showed up with my file folder full of my info, things I had made notes on, things I found on the internet and my question list. He congratulated me for being so well prepared and after asking a few qualifying questions asked me if anyone had ever discussed the drug Xolair and I said no. Xolair was actually developed for asthma sufferers and several years ago it was discovered that it is helpful for chronic urticaria of unknown origin. He told me his success rate for this drug was quite high, the side effects were low compared to other options and it could take anywhere from 4-6 monthly injections before any results might show up. I was all for it, then the shoe dropped, the med is very expensive and needs approval from the insurance company. He wrote the prescription and told me to contact my insurance company to determine what the response would be.
My insurance through my job was through a plan at Group Health that covered multiple locations other than Group Health and I was hoping that they would green light the injections without much delay. How fucking wrong I was... They declined to pay for it, I appealed the decision, the declined it again, my specialist took on the next appeal and even got a phone call where he described what his proposed treatment plan was and why he felt I would benefit from the Xolair. They declined again and my specialist gave it another go and guess what? They declined it again. Let me just say that I was and still am livid that my insurance company at the time was dictating my care instead of my doctor. By this time I was desperate, I was coming up on a year of dealing with this horrible, chronic situation and feeling worse every day. The sense of desperation, the anxiety, the fear, the daily pain, the lack of sleep, the prednisone, it all added up to a situation where by December of 2015 I was the lowest I have ever been and feeling frantic. I hit a period where I honestly thought about suicide. Not many people know about this level that I reached. It scared the hell out of me, I ended up in the ER right after Christmas thinking I had another blood clot in my leg and so stressed out I was a walking mess. A short time after, still feeling severe anxiety, which I learned is one of the side effects of high levels of histamine, not to mention being on prednisone upping the ante on the anxiety as well. I seriously thought I was losing my mind. Shortly after that I ran into a friend who used to be a nurse who asked about my health and upon hearing I was still on prednisone and taking it daily for months asked me how I was mentally. I sucked it up and told her about my thoughts of suicide, feeling shame, fear and just so fucking tired of trying to hold it all together every day. She took my hand and looked at me and said, "Sherry, prednisone screws with your mind, your depression is not just being chronically ill but also drug induced by the prednisone." I burst into to tears, not one of my doctors ever said anything about this side effect and if I read it in any of the literature they gave me, I am sure that my histamine flooded brain didn't hold on to any of the information.
Just a little info here, high levels of histamine lead to fuzzy headed thinking, forgetfulness, anxiety and serious cognitive issues. Histamine while necessary in normal levels to help digest food, in massive amounts wreaks havoc on the central nervous system, thought processes and sleep, which brings more of everything above. The conversation with my friend sent me back out to the internet to do more research and learn more. It was a huge relief to know I wasn't going crazy for no reason, I had a lot of help from meds and histamine on the crazy train. I was angry, pissed as hell actually that my insurance company was still declining to pay for the Xolair which I was holding out hope would change my situation and give me back my life. I had also been taking massive doses of anti-histamines which are hard on the central nervous system and I learned can lead to alzheimers disease. Great, one more piece of bullshit fear to add to the shitstorm. I was also having serious issues having conversations and processing what was being said, let alone remembering any of it later.
Fast forward to March of 2016, we switched our insurance company at work and ended up with United Healthcare. At the meeting with the company rep I gave her some info on my situation and what I was dealing with and she said she would do some checking, my broker followed up with her and earlier the broker had directed me to a web site for the makers of Xolair and I obtained a co-pay card from the manufacturer that would help offset the cost of the med once I got the approval. I was so fortunate that the broker stayed on top of the UHC rep and they called me with our new account info and let me know that once I met my deductible I would be covered 100% for the injections. My first injection would turn out to meet my deductible with half left over, the manufacturer co-pay card picked up all but $125 of the rest of it and I was off and running. These injections were $4000 each and I had to go in every 30 days to get them. Yup, $4000 each and they knocked me for a loop every single time, plus being an outlyer, I had strange side effects with the first one. I was my specialists top two most difficult cases he's ever had to address. My blood pressure went zooming up, where most other people had theirs drop and then I would have to get myself home with a taxi, a ferry, a walk home and literally would pass out for the rest of the day and be on slow motion for a couple of days after.
I ended up getting 8 Xolair injections all together, managed to get off prednisone once for about 8 weeks and then the hives got worse, not better. By this time it is now the fall of 2016 and I am faced with having to start taking serious immune suppressors, the kind they give to people who have organ transplants so they don't reject their organs. They all have very serious side effects and I am incredibly chemically sensitive. Around this same time my friend Nicole told me to check in to medical marijuana and in specific CBD use to help with not only pain management, but inflammation, sleep issues and anxiety. I decided to get my green card, even though I live in Washington state where it is legal and proceeded to head to my local dispensary. They of course had never heard of anyone in my situation and thus began a trial and error situation to see what worked and what didn't. Now I am a child of the 70's in an Oregon college town, I know weed, have used weed but for very different reasons, this was all uncharted waters for me. I dove in with a vengeance and learned so many different things along the way. I started a drug called Cyclosporine and while it seemed to help with the hives, I started having side effects similar to the Xarelto, numbness in my hands and feet, stomach pains and I had to go in every two weeks to get my liver and kidneys checked as they drug is so hard on those organs. When I went in after the first two weeks and told my specialist about my issues, he told me to stop taking it immediately.. My blood work came back showing my kidneys and liver in distress.
Next up on the drug wheel was a drug called Dapsone, lower on the reaction scale supposedly and the first week I took it, I felt ok, the hives were still semi under control, but the longer I was on it the more hives started returning and I just felt, well, wrong. I went in to see my specialist after 2 weeks and still showed some kidney and liver distress and I told him about the hives and rashes returning more every day. He told me to try one more week and then gave me a prescription for a drug called CellCept, which had many of the same side effects as the Cyclosporine. By this time I was at least sleeping a bit better, was slowly tapering down off of the prenisone and feeling that the CBD was helping me. I had found a book by a medical medium named Anthony William that I read that lead me to start doing freshly juiced celery every morning before I had any food and I did some more reading about the Dapsone and found that one of the side effects is that it can create hives and rashes. Well when you already have hives and rashes, how the hell are you supposed to know whether it's the drug or the hives you have been fighting for 2 freaking years. I made a decision to trust my intuition that was clearly saying "get off the meds Sherry" and stopped taking the Dapsone the next day, continued with tapering my prednisone, still working with the CBD in capsule format, with a tincture during the day that didn't get me high and a topical that helped with the itch and rash. I started feeling better by day 2 off the meds.
At the same time I kept looking for other options and a friend suggested I seek out a functional medical specialist. I did some research, found a couple I was interested in and found a nurse practitioner at Swedish that was accepting new patients. Why functional medicine, or what is it? Well the why was that I needed someone who understands all of the conventional medicine I had been subjected to and was seeking a more holistic approach. I wanted to stop just trying to cover it up and heal from the inside out. Functional medicine is a holistic approach, not just conventional medicine fueled by pharmaceuticals. I saw my specialist the first Wednesday of January 2017 and told him about everything I had decided and how well I was doing. I knew from the past times that every time I taper off of the prednisone, the hives kick in, prednisone suppresses everything and once you taper, especially after being on it for as long as I had it was going to be a process trying to get off of it. I also told him I was seeing a new functional medical specialist in two days. He expressed dismay that he felt he had failed me, we discussed the CBD which he admitted that he had never done any studies on and I told him he definitely needed to! I told him that depending on how the next couple of weeks went I was going to be breaking up with him and moving to a more holistic, less pharmaceutical approach. He wished me luck, told me he was happy I was feeling better and to get in touch if things should get worse in any way.
Two days later I walked into the office of the woman who changed my life for the better. We discussed my history and she looked at me and said, "you have been through hell with this and on so many toxic chemicals, and I think I can help you." I let out a huge sigh of relief, I liked her manner, her sense of humor and her approach. She is also certified in ayurvedic medicine, so next we talked about my dosha and food. She then asked me if I had ever heard of a drug called Cromolyn Sodium and I said no. Evidently it was developed as a nasal inhalant for sinus histamine, is a non-steroid, and they have discovered recently that an oral dose stabilizes the mast cells so they don't die so fast creating the over production of histamine leading to the hives and rashes. She took a look at my arms which though were considerably better than they had been, still looked like someone had taken a hot iron and burned me. She wanted me to start it while I was still detoxing from the prednisone, adjusted my CBD dosages and gave me a few supplements to try to see if they would help with the prednisone detox. That meeting, that day my life took a turn for the better! I started the Cromolyn Sodium the next day and within 5 days I was the best I had been in over 2 years and things just kept getting better every day. Prednisone detox is a bitch and since it isn't selective on what it suppresses the first 4 weeks I walk around feeling like I am 90 years old and since I had only ever been able to get off of it for the max of 8 weeks I had no idea what to expect after that. This go round turned out to be the easiest detox off of prednisone I had attempted yet and after almost 6 months I haven't had another dose of prednisone. It will probably be at least another 6 months to get it totally out of my body since I was on it daily for most of 18 months. It gets into your muscles, your joints, and your bones and slowly leaches out once you stop taking it. I still get peaks and valleys with the detox but each one is a little less than the previous one.
I started dropping all of the puffiness from the prednisone, continued to get better and better in terms of the hives and continue tweaking my diet based on her suggestions. I have follow up appointments every 8 weeks and every time I see her I get better results on my blood work, my body is doing better than anyone ever expected I would be able to and it's only been 6 months. I still have to be careful with the trigger foods and it is a constant test and trial over what still triggers and what doesn't, the med has zero side effects for me and I have dropped over 26 pounds since I walked through her door that first Friday in January. As my new wonder specialist informed me on my last visit, I was in a very deep divot with my health and it will probably take about two years to get out of that divot completely. I keep getting gold stars each time I see her and I feel better than I have in three years.
So that is the story of how this medical mystery came into being and even though these are long posts, this is a compressed version of what I have been through. In future posts I will start talking about some of the things I have tried over these last three years, food, meds, supplements, yoga, books, meditation and CBD. I will be posting some links to web pages that I found helpful, links to products that I use and some yoga sequences. I will be linking my YouTube channel as well and I am working on my first podcast to post up in the next couple of weeks as well as offering some coaching sessions. Feel free to contact me on my contact page and ask questions and I will do my best to answer them.
Peace...