As you may have noticed, I haven’t blogged in over a year. There’s a very good reason. I was in hell. Not where Satan resides, but a hell on earth. Let me start by saying…I usually don’t put things like this out there in internet land. This time is different because I may be able to help others. If even one person can benefit from this post, it will be worth it.
It started (or so I thought) in the Spring of 2013. I found myself to be in a downward spiral with my health. Weird things were happening to me and I didn’t understand them at all. Every muscle in my body ached and/or throbbed, my fingers started to vibrate and move all by themselves and I was getting muscle twitches throughout my entire body. As my illness progressed, I started having auditory hallucinations, muscle loss in my hands and calves and I suffered from tremors. I had headaches that could take down the strongest of mules. At one point, for three days, I needed assistance in walking due to the fact that I had gone numb from the waist down. Back/spinal pain that was horrendous and skin that felt like it was crawling. My feet were on fire to the point that it hurt terribly to have shoes on. I started having bouts of hypoglycemia. The soles of my feet became so painful that there were days that I would avoid walking.
Of course I went to the doctor. Initially I was told it was anxiety and was referred to the psych department. Yeah, ok. Of course I’m anxious…my body is shutting down! That’s helpful. I underwent three different MRI’s, an x-ray and blood tests too numerous to mention. I was sent to see several different specialists and each time things were only “ruled out”, but no one could tell me what was wrong with me. I was given new meds for each various symptom (at one point, I had 6 new scripts on my night stand!) but I didn’t want band-aids. I wanted someone to tell me what was wrong so I could fix it! No more band-aids!!!
Insomnia kicked in, leaving me sleepless for days on end. Numbness, buzzing sensations throughout my body and ringing in my ears certainly didn’t help induce sleep. I ended up on the computer night after night hoping to find an answer. At 4:00 on a July morning, as I was laying in bed staring at the ceiling, something “clicked” in my brain. I remembered a discussion I had with my ENT doc a few months back. He had put me on daily Prilosec 8 months prior and as he was examining me, he commented “I don’t want to keep you on this medicine much longer because it will suck the minerals out of your bones”. Huh?? I remembered looking it up when I got home and sure enough Prilosec, and other medicines like it, can suck the calcium, magnesium, potassium, etc. right out of your bones and entire system. I took myself off of the Prilosec.
With that thought it my mind, I got up and started looking up mineral deficiencies. Bingo! I came across numerous sites that discussed magnesium deficiency and what it can do to the body. Wow! Muscle twitches, insomnia, tremors and the list went on and on! Did you know that magnesium is responsible for over 300 bodily functions and that it can be considered the most important mineral in the body? Me either! I also found that the foods highest in magnesium were rarely on my plate. I won’t go into all of the benefits, what magnesium does, what foods are best etc. but I urge you to do a little research on your own about this wonder mineral.
I learned that the best way to absorb magnesium is through the skin, so I immediately started soaking in Epsom salt baths. I am not exaggerating when I say that I saw and felt an improvement after that very first bath. You have no idea how wonderful it was to feel that there may be an answer after all! I took magnesium supplements, soaked in Epsom salts daily and even bought magnesium oil to spray on my skin before bed. I started to feel better. The twitching was almost gone, the tremors were minimal, no more bouts of hypoglycemia. But still…something wasn’t right. I couldn’t get over the hump of feeling sick, having lots of pain and the other odd symptoms would still come back to rear their ugly heads on and off.
In October, I was lucky enough to have sought out a doctor that listened to me for 45 minutes straight, ran some blood work and gave me an answer. I had Lyme Disease. Not just Lyme, but the co-infection Bartonella as well. Holy crud. Lyme Disease. My mind raced back to about 10 years ago when I was in bed for days with a severe “flu”. Since that time, my feet had tingled and my body would get achy. Then 7 years prior, I had very significant dizzy spells and underwent testing for MS and other scary neurological diseases after lesions were found on my brain. The chief neurologist at the time released me with a clean bill of health stating “sometimes we don’t know why those lesions occur”.
Since that time, I had developed muscle pain, headaches, bouts of Restless Leg Syndrome and some small visual disturbances. I was diagnosed with Fibromyalgia 6 years ago. Then I was seen for severe calf pain, periods of muscle twitching, poor circulation, heart palpitations and odd electric sensations in my legs. I was repeatedly told that they were all symptoms of Fibromyalgia.
Nope. Lyme. It appeared as if I had Lyme Disease for a very long time and we theorized that I was re-infected in the Spring, which is probably when I picked up the Bartonella. Apparently Lyme can affect any part of your body. Your muscles, joints, central nervous system, digestive system, endocrine system…all of it. Lyme can leave lesions on your brain and attack your spinal fluid. As I looked back over the years and realized that most of what I had undergone was probably due to Lyme, I was not only shocked but angry. I learned that the current testing for Lyme disease that is used by most doctors and hospitals is grossly inaccurate. I’ve learned that Lyme Disease can imitate numerous other diseases like MS, Lou Gehrig’s Disease and Parkinson’s Disease. You know what else I’ve learned about Lyme? It depletes the magnesium from your system!! Double whammy for me.
I started treatment in November. I am currently taking 3 different antibiotics and probiotics so that the antibiotics don’t destroy my stomach. I take extra magnesium supplements along with milk thistle, Vitamin D and a B complex. I have a Hepatologist that keeps track of my liver. I eat plenty of citrus to get my Vitamin C. Once every 6-8 weeks, I am given an i.v. cocktail of vitamins to help boost my immune system so that it can aid the antibiotics in fighting off the Lyme and Bartonella.
There are more good days than I had in the summer for sure and I can say that I’ve seen some improvement. For instance, my headaches now come only once every few weeks rather than every day. In February, the soles of my feet finally stopped hurting. But I know that I’m in for a long road ahead of me. Most days, I can muddle through the pain, fight the fatigue, ignore the ringing in my ears and occasional twitching and do exercises to stretch out the terrible tightness in my muscles and tendons. But there are also days like today. I got little sleep due to having bad tremors all night, which has left me exhausted, in pain and wanting to go back to bed until it all goes away. But when I feel beaten, I talk to the Lyme and tell it that it needs to get out of my body and that I will do anything in my power to make sure that it does.
Lyme is scary. Not knowing is worse. Bottom line is that I am the one that found my answers. I researched until something made sense. I tested my own theories. I sought out medical help until I finally found someone that was able to help me recover. I didn’t take no for an answer and I didn’t accept “it just happens” as an explanation.
Don’t get me started on the whys. Why wasn’t I told about the side effects of the Prilosec when I was first given it? Why didn’t anyone dig further into Lyme Disease as an answer? Why doesn’t the government, medical community and insurance companies acknowledge this terrible disease and work on more accurate testing and diagnoses?
We are all responsible for our own bodies and we just have to keep pushing until we get on the right track. All I ask of you is two things. First, please look up magnesium deficiency as there is up to 75% of the population that is deficient and doesn’t even know it. This can have devastating effects in the long run. Second, if you truly believe that there is something physically wrong with you and aren’t getting the answers you need…keep pushing, keep asking and keep researching. You deserve to be as healthy as you can be. In the mean time, I’m going to keep trekking along this road back from hell. It’s a place that I don’t ever want to be in again. And I’m going to take a nap. :-)