Yes, I have Lyme Disease.
What is Lyme disease?
-Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. Lyme is called “The Great Imitator,” because its symptoms mimic many other diseases. It can affect any organ of the body, including the brain and nervous system, muscles and joints, and the heart.
-The symptomology of Lyme disease is varied and diverse, resulting in significant difficulty in diagnosis. The symptoms of Fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, Parkinson’s and Alzheimer’s, as well as more than some 350 other diseases. When patients do present with a number of infections and coinfections, including other tick-borne infections, it is this complicated presentation that we call Lyme Disease Complex.
I am actually surprised I am writing this due to the fact I usually keep this sort of stuff pretty low key. But I felt the need to write to not only help myself, but hopefully to help others as well.
If you had not noticed, especially in my “2015″ blog, I have been sick. It all had started back in August of last year with a horrible sore throat that ended up being strep throat. At the time I did not have insurance either. I was unable to pay the $325 per month thru Obamacare, so like most, I make some phone calls to those who have leftover antibiotics. Which helped thankfully.
Then September came and went and I managed to get thru it but my energy was failing rather quickly. I caught a cold and my lower abdomen was beginning to feel alot of pressure. I was making more trips to the bathroom than usual. Of course one always worries, especially us women, that maybe a tumor was growing there. But again, with no insurance, I continued to do the best to keep myself healthy and push on. I kept up with the usual Vitamin C and Echinacea which always seems to help.
During the month of October, I can’t say I was getting any better. At work I was now taking constant trips to the bathroom because the pressure was so bad. I just dealt with it by eating AZO pills like candy and drinking cranberry juice to no end. I could tell it was a bladder infection but with no insurance, I planned to tackle it my way. And I seemed to get it under control. My pain subsided and I was able to maintain myself. Soon after, cold sweats began during the day and subtle chest pains started creeping in, on and off. I blamed it that on perimenopause and didn’t think twice of it.
November was horrible. With the holidays coming, I found myself in bed more and more each day. The fatigue was endless and I could barely concentrate at work anymore. My body felt as though it was beginning to shut down bit by bit. Yes, I know you all think I should have gone to see a doctor by now, but any doctor bill, let alone medicine would kill me financially. So I just kept doing my best to take care of myself and push on. By Thanksgiving, I was so sick with the flu, I could only get out to visit for a short time and head back to bed. By this time my kids were beginning to worry. As was I. Though I kept my best to keep smiling even though I didn’t have any answers.
I ended up having to quit work. Not only because they wanted me full time, but I was basically looking at alot of paperwork and not comprehending what I was looking at. Let alone what I was doing. I felt my mind was amiss and honestly didn’t think much of it other than just a phase of being ill. Unfortunately, to this day, my mind has slipped away even more. I am thankful to have a good day today to write. I don’t get these very often.
Finally in December, I had had enough. I needed a doctor. With my lower abdomen pain, the flu , the constant feeling of ill ,and living in my bed, I went in. I went to see my gynecologist first. At that point it was a yeast infection and he figured that’s all that was wrong and put me on some antibiotics and I was on my way. I felt it was much more than that and he told me to go see my primary doctor and go from there. Thankfully I found insurance that I could afford and it would go in effect come January 1st. So I waited until then.
January was one hell of a ride. I blew off my primary care physician and decided to go straight to the urologist. I begged him to help me find out what was wrong with me. The pain was excruciating. He drew some blood, did some tests, and had me scheduled for surgery within a week. My urethra was closing in and a urethra dilation was performed. But of course, after three failed EKGs with a septal infarct (dead tissue), and finally the last cleared, I got to have surgery. I was relieved to have that completed, especially having insurance now. So now I get to deal with an over active bladder and interstitial cystitis. 🙁 My doctor gave me some new meds to start for my bladder and again, I was sent on my way. Happy and then again, not so happy. I still felt sick.
The whole month of January I was in bed. Shortly after the surgery, I finally called upon my primary doctor because I had no where else to go. My body began to feel as though it was shutting down. Fatigue was horrible and my brain was foggy. I began to stutter and my speech was slurred. I could no longer find words to hold a conversations anymore. I had to consistently lay down at all times to relieve pressure in my abdomen. I could no longer walk without my kids holding me from room to room. I could no longer drive as disequilibrium and vertigo took over.
So I went to my doctor and he did some blood tests. The first came back with high white blood cell counts and high absolute neutrophils. The neutrophils is a bacteria in my body causing the white cell count to go up. So by then, all I could think was cancer or something. But as usual, I don’t panic or go crazy freaking out. I am very low key when it comes to illness and I wanted to make sure I don’t jump to any conclusions. With that test, we needed to order another blood test to confirm those findings. And guess what? The second set came back as my doctor said, like an 18 year old healthy woman. And to start adding more salt to my diet he said. WT_? Are you kidding me? I was so upset. By then I knew, no one is going to listen to me. I was at the end of my rope.
So the only thing he said he could do for me is set me up a brain CT scan to satisfy my reasoning behind my speech/memory loss/dementia that has kicked in full force. I remember walking out of that appointment with my sister and I broke down.
To this day, I am still dumbfounded. I cannot tell you how one feels when you are sick and passed around like a toy and told nothing is wrong. To hell with them, I went ahead and set up an appointment with a neurologist and hoped maybe he can help. Maybe there was something in my brain that is causing all this. I wanted him to look at my CT scan and see if anything was there.
By now, my friend Andy had me on a 100% pure oregano oil, probiatics, and rest, rest, rest. So I did. I was hoping since doctors could not figure out what I felt was like a big parasite in my body, maybe this oregano oil will wipe it out. And I tell you, that is some wicked stuff! And I do believe to this day, it did help me gain some strength back.
In February it seemed as though my bed and Netflix was my life. Thankfully I seemed to have good days and bad. I’ve read Lyme Disease symptoms flare up every few weeks. This nasty little bacteria infiltrates into your organs, deep inside your tissue and makes each and every body part miserable at any time it wants. Just rotating around keeping one sick.
Again frustrated, not wanting to wait for the neurologist appt, I called my primary doctor to do a third blood test. I felt the first test with the high counts was the correct one. I was denied by my doctor of that test. So I figured I had to be patient and wait to see the neurologist and become the aggressive and demanding patient that I have come to be.
I walked into that appointment with the neurologist sick as usual and explained everything to him. I requested a Lyme Disease test, A Rheumatic Fever test, a Multiple Sclerosis test, and anything else imaginable. I think he thought I was nuts at first but gave in and went ahead and ordered all of them. He also had yet to see my CT scan, which was really another big reason behind the appointment. My primary doctor never got it to him. Ugh!!
So this doctor now sent me home with the possibility of having the beginning stages of menopause. That my hormones were off balance. So he wrote me a prescription to help. It’s supposed to offset my chronic fatigue, my brain fog, and speech problems. I actually had become to believe it was just menopause at this time as well. But then again, deep down I knew I was sick. You don’t feel sick for 7 months straight and it’s menopause. Right?
The following week, just a few weeks ago, those requested blood tests came back normal. Again, I was dumbfounded by the results. I told myself there is no way. Menopause does not make you feel this sick or causing all of these debilitating problems.
By now I was just done. I know depression was kicking in as my life has become no life at all. This was it. I have to live with it and continue my life in and out of bed. And I am so thankful my boys continue to support and help me as I keep trying support their worries too. And I feel bad because I try to do things with them, but it is so limited. I even set up a trip to Universal Studios over spring break because at that point, I figured it actually could be may last trip with them. That’s what this disease does to you. It slowly is killing you. Your mindset and body completely changes.
Come early March, a week after my blood tests that came out fine, I ended up in urgent care. I had my son take me because I couldn’t breathe and this sore throat and cough was getting worse and worse. My fever was high and I knew I needed antibiotics. Funny thing, at the urgent care as sick as I was, they were going to send me off with flu meds. I demanded a Z pack knowing I was going to Universal in just a few short days. Thankfully the gave me the prescription.
Here’s the clincher, and by now I am sure you are patiently waiting for the end of my wonderful blog of Lyme Disease. So I go to pick up my medicine after urgent care and I get a phone call from my neurologists office. They apologized for the last results and let me know they missed a panel. That I have Lyme Disease.
Alleluia! I knew I wasn’t crazy! I am just so thankful we figured it out and I am now going thru treatment. Unfortunately, the little critter Borrelia (Lyme) has another buddy bacteria it’s playing with in my body. Another bacteria that has me setting up an appointment with an infectious disease doctor. Gee, if it’s not one thing it’s another! But hopefully whatever it is, we can wipe it out of my system and have my perky and fun life back! God knows I need it.
And I thank you for reading. Yeah, I got a bit detailed, but if I hadn’t you wouldn’t understand what entails this horrible disease. And one last thing; No, I do not remember any tick or tick bite. Nor did I ever have a bulls eye rash. Creepy thing is, the tick has to be embedded for 3-4 days to pass on the bacteria. Yuck!!