In my last post, I mentioned seeing a new doctor up in Edmonds, WA. His name is Dr. Wakely at Holistic Healing Arts. And he is, hands down, the BEST doctor I've ever seen (remember, I've seen hundreds, so that's really saying something!). My time with him started last December, where we had a lengthy phone consult. I knew right away how good this guy was going to be. I mean, dang, he was smart. The smartest yet. But it wasn't just his brain that impressed me. He asked the most detailed questions - not just about my health, but about my emotional well-being, my relationships and everything in between. Not only that, but he actually listened to my answers. Which may not seem like a big deal - but if you've been in my shoes - you know how rare that really is. On top of all that, he is the most compassionate and understanding doctor I've ever come across. He even offered to take time out of his day to schedule an additional call with my husband, to make sure he was on board with our treatment plan. I knew, after that phone visit, that I was in very, very good hands.
In February, my husband and I took our first trek up to meet Dr. Wakely in person. We first spent several hours talking more about my health, even down to how this 10 year struggle has affected our relationship. There may or may not have been some tears shed (by me, of course, not by my hubby!). You may be thinking, "this is a doctor visit, not a counseling session"! But you have no idea how good it felt to talk about the things we never talk about. For each of us to understand how the other is coping.
Dr. Wakely gave us each a bit of advice. He told me that I have to remember that no one in my life is ever going to understand what it's like to be me, or how it feels to deal with everything that I have. I'm not going to lie - that is a hard pill to swallow. Because I want so badly for people to really get what this hell is like. What's worse than having to live this horrible way of life, is to live it so alone. In the past few months (Including a family visit at Easter) I've only had 3 people ask me how I was doing. Even my husband is tired of hearing how I'm feeling. And I don't really blame him. But it's still lonely as hell. Still, I realize that what Dr. Wakely said is true. As many times as I wish that the people in my life could experience my pain and suffering, just for a day, I'm also very glad that no one else in my life has to go through what I do.
But back to the appointment. :) Dr. Wakely discussed my symptoms by using the health bucket analogy. My body, the "bucket," is filling up with things like toxins, and instead of draining through the spigot like it's supposed to, it's filling up, and trying to escape through other avenues, like my skin. His ultimate job is to clear that spigot. Like many doctors have told me, Dr. Wakely said I am a very tough case. But he also said that he feels very confident he'll be able to help me (and that he doesn't tell everyone that). It will be a long road yet; likely a year before I start noticing a significant difference, and maybe even longer before my pain gets better, as that will be the last symptom to clear.
Next, I spent an hour up on his table, as he conducted autonomic response testing. I'm not good at explaining how this works - so if you don't know what it is - please look it up, especially if you're on you're own quest to achieve health. In my 10+ year journey, the 3 doctors who have helped make significant improvements with my health have all performed this form of care. It's a weird concept, but it works!
http://rasahealth.com/what-is-autonomic-response-testing/
First of all, he found my body to be "blocked" and "double switched". Blocked means that there is stress in your nervous system that is "blocking" it from working properly. "Switched" is another way for saying that the nervous system is in a state of confusion. Dr. Wakely explained that my body's fight or flight and rest and digest responses were mixed up. Both of these issues prevent a person from improving or responding to treatment, and he first had to work at unblocking and unswitching before we could continue.
Secondly, he found that my lymph, thyroid and kidneys were testing as stressed. But my biggest issues are parasites, and viral and bacterial infections, including, but not limited to, strep. He rates these by severity, on a system of 1-4, with 4 being the worst. He said that he has only ever rated one other patient at a 4, but he found the Babesia consuming my body to be a 4+. This co-infection of Lyme can cause a whole host of symptoms in and of itself:
Aside from practicing muscle testing, Dr. W. also provides Neural Therapy treatment, which is a new thing for me. This involves injecting procaine, a local anesthetic, into scars, glands, trigger points, acupuncture points and other tissues as a form of treatment for chronic pain and illness. Here's a few articles if you're interested in reading more about this method of healing:
http://www.getprolo.com/neural-therapy-in-the-treatment-of-acute-pain-and-chronic-pain/
https://www.practicalpainmanagement.com/treatments/complementary/prolotherapy/neural-therapy-its-role-effective-treatment-chronic-pain
https://docs.wixstatic.com/ugd/49aad5_8c91f007ac8548a9b0ceceab65dfe7d7.pdf
At my first visit, Dr. Wakely injected all of my surgery scars - gallbladder, ankle and back. He's also treated my organs; for instance at this last visit, he injected all around the area of my liver. I've also had the "crown of thorns" done a few times - that is injections around the entire circumference of your head. I'm not going to lie - these injections hurt, and in some places much more than others. But as with everything, I'm willing to do anything if I think it will help!
Another thing we've recently started doing is LDA and LDI - also known as Low Dose Antigen & Immunotherapy treatments - which are used for "turning off" an overactive immune system, and can apply to allergies, autoimmune diseases, or any process in which the immune system is activated. It tells the immune system to ignore the allergens, and the more it hears this message, the more effective it becomes, and the longer it lasts. Needles, needles, and more needles! Each of these injections feel like a bee sting on steroids. Ouch!
https://www.specialtynaturalmedicine.com/our-services/allergy-shot-treatments/
This last Friday, he tested me at a 3+ rating with the following bacteria & viruses: Babesia, Bartonella, Rickettsia and Borrelia. The good news is, the rating is better than my previous 4+. The bad news is, Lyme and co-infections are still running rampant in my body. Dr. Wakeley has also ordered a slew of labs, which he spent a good 30 minutes explaining the results in laymen's terms to my husband and I back in March. The most interesting part is that my body is basically showing itself to be both hyperthyroid and hypothyroid at the same time, which is something he has never seen before and is conferring with other doctors about.
Under Dr. Wakely's care, I am also doing daily dry brushing and castor oil packs, as well as a boat-load of supplements all day long. He also has me conducting an elimination diet at the moment, to determine which foods are inflammatory for me. So far, I've learned of only one - and that is dairy. Out of everything I could cut out of my diet, that is probably the one I had most hoped was not an indicator for me. Because I love milk in my coffee and, of course, I love ice cream, duh. Such a sad day that revelation was!
So far, we have had four in-person visits with Dr. Wakely. They have all been very insightful, and always end in a big hug. :) But they are also very taxing on my body. He has encouraged me to visit on Fridays because the day of, and few days after, treatment are very difficult on me. I'm usually laying on the couch feeling 10 times worse than normal - heightened pain, and so tired and sick I can hardly move. This last round has been the worst yet - even into Monday and Tuesday I was so incredibly dizzy and nauseous, I could hardly see straight. Today is the first day I started feeling a little more normal (yet still nauseous). Thankfully my husband has stepped up his fatherly duties on these days, but it sure makes for really crappy weekends, and even tougher work days.
Dr. Wakely actually called me on his way home from work last night, as his nurse let him know how poorly I have been feeling. He told me that all of these symptoms are actually a good sign that my body is detoxing rather quickly. There are a handful of other things that have been happening lately as well, that have shown him how well my body is responding to treatment. He says that I'm likely having a tougher time with the post-treatment sickness because of my hormones. He also feels quite certain that all the viruses in my body are actually attacking my thyroid. And he told me it's very likely I have PCOS, which is something that I have been quite sure of myself for years. Also, my estrogen levels are extremely high - 100 points higher, in fact, than they are supposed to be (along with my extremely low progesterone) which means I'm a walking hormone mess.
On Friday, Dr. Wakely had a graduate student in his office, learning the practice first-hand. During our appointment, he would often take a bit of extra time to explain his reasoning and methods to her. Half-way into our visit, he told her that on top of having an 18 month-old, I also have a full-time job. I didn't think much of it at first, but then he told her that anyone else with my symptoms, would not be working. I've been aware that most people in my position do not work, but to hear a professional Lyme doctor say it out loud - a guy who sees many patients like me every day - really hit home just how strong I've had to become through all of this. Curiously, I did some digging and found these statistics:
Obviously I'm not working because I want to, I'm working because I have to. Not that I don't like my job - because I do. But nearly every day is a huge challenge - some, like the last three days, more than others. And as with most every situation, I'm surrounded by people who don't understand or even recognize what I'm going through, which makes it that much harder. I honestly don't know how so many others can live the lives we do, without working. Because all of my medical stuff aside, especially now with the daycare costs that are higher than paying a college tuition, we were already living paycheck to paycheck. But with the amount of money that goes into this illness - how can people possibly afford their healthcare without a job to pay for it? I know, you'll probably say disability - which, from what I'm told, is a huge battle when you have Lyme. It sounds like it would take years, tons of money, lawyers, etc. just to get a small chance at winning. I have a lot of fight in me, but probably not that much anymore.
It probably goes without saying, that finally finding "the best" doctor, comes at a great cost. It's crazy to think that just a few years ago, paying for my Lymestop treatments that were $2,500 seemed so far out of reach that I had to do a fundraiser for it - because now we are paying at least $1,500 every single time we go up there! We've only been going since February and have already shelled out almost $6,000.
At this rate, I won't be able to afford going much longer. Every month, we have to transfer money out of our savings to pay for my visit. At this point in time, I'm pretty used to depleting all of my money; in the early days, I was sent to collections multiple times because I couldn't pay all my medical bills, and I even had to sell sentimental jewelry to pay for the ever-increasing medical costs. The last few years, though, I have been able to put aside my end-of-the-year bonuses. My goal in mind was to save up for a vacation. A "real" vacation. The kind we've never gotten to take because I've never been well enough, and because all of our money goes toward my health. I was really hoping that the money I saved up would allow us a trip to "celebrate" the point when I reach complete remission, when that day finally comes.
But unfortunately, not only is that not in the cards for us, it also won't even come close to being enough to pay for these doctor visits. So I'm biting the bullet and taking a chance at doing another online fundraiser. I feel guilty doing this again. I know a lot of my friends and family already donated to my "cause". So I wouldn't blame anyone if they didn't want to give, especially if they already have. I still think that going to Lymestop was worth it, and that I wouldn't be as far along as I am if I hadn't. So I also really hope that those that helped me before don't think that it was a waste of money - because it definitely wasn't. However, I also thought, until recently, that I was better off than I actually am. That most of my symptoms were taken care of aside from my pain. Sadly, that is not the case. However, I feel absolutely certain that Dr. Wakely is the doctor who will carry me the rest of the way to reaching that remission point. I'm just so scared that I will have to quit seeing him. So if anyone feels compelled to pay even a little to help us out, I would be forever grateful, and thank you from the bottom of my heart.
