Here is some, but not even remotely close to what I have taken for medication and supplements in the past year. Ok, I may be a sliiiigggghht hoarder. But reader who does NOT have Lyme, you can see just how serious this disease really is. Lyme is not a joke. Chronic Lyme is real, and I am living proof. B-12 shots, all my supplements, oral antibiotics, heart meds, seizure meds, anti-crazy pills, sleep meds, tinctures, my IV pole adorned by the morning’s IVs….
One year ago, I limped into Dr. S’s office, whom I had never met, and poured out every little detail about my past several years and how I spiraled downhill. At that point I didn’t even think to go back to when I was a child. I mentioned my car accident from when I was 16, and in the more recent years I discussed more recently the more frequent passing out, my ovarian cyst, how I was diagnosed with fibromyalgia, CFS, IBS, anxiety, and depression. I wasn’t remotely depressed by the way, my previous Doctor said I was crazy because my Mother is crazy and recommended me to be medicated…. dick. And the list goes on.
I was skeptical as he was a naturopath and thought it was all chewing on leaves, cinnamon sticks, and giving 10 “Hail Mary’s”, and you are cured.
I know different now and personally feel naturopaths are the best doctors to make a visit to, as they look at the whole picture and fix the problem, not just treat the symptoms. I had several dead ends before my visit to him, (I am sure a lot of Lymies can relate) and no real answers time and time again.
As I divulged my life story, Dr S typed a million miles per hour his notes, yet LISTENING TO WHAT I HAD TO SAY *and the angels sing* and once I was finally done he said to me, “I think you have Lyme.” He also told me I showed symptoms of MS, but already had a plan to work on Lyme as he was positive this is what I had going on. He recommended me to visit a neurologist as well due to my numbness issues and to rule out MS or any other underlying causes.
Lyme Disease, huh? I thought to myself, ok… no big deal, easy fix. I will be back up and running in no time. As I always say, “rainbows, butterflies, and unicorns”. Phew. So glad it’s ONLY Lyme and nothing serious!
He began to talk about a Lyme antigen (PCR) test to see if I tested positive. Dr. S. then gave the longest spiel I have ever heard from a Doctor. I honestly had a hard time understanding a god damn word he was saying, as it kind of sounded like he took a huge breathe and explained everything in lightyear speed… like he had had this conversation before… a lot. He said he was going to put me on a high dose of doxycycline to do the test. Ok.. getting slightly scared..
Then he brought out my “big bag of goodies”. Glutamine, probiotics, a few neuro helpers, and was told I could take my pain medication (prescription Ibuprofen) if needed and recommended to pick up fish oil while I got my doxy script at the pharmacy. Dr. S, you aren’t helping the situation of nervousness at all ! I thought this was the biggest bag of things to take in the entire world!
I was given notes about our visit, which was good because in one ear, out the other. The only thing I got from the conversation was that Lyme was more serious than I thought, he talked about herx reactions (what the eff are those?) protecting your gut, among many other things that sounded like the teacher from “Peanuts”. And that is why he does his notes. 🙂
He told me I handled it surprisingly well and many people acted much more upset. I was very naive at the time, but my mind was also flooded with thoughts of worry (he just gave me the biggest bag ever! *rolls eyes*), sadness (he recommended to cut back on work, which I loved), confusion (I didn’t really know what was happening), and happiness (someone finally listened to me, and gave me a direction to go in).
As soon as I got in the car, the tears came and I bawled my eyes out my entire way home. I just didn’t know what to think or how to process all of this information.
Sadly enough, knowing what I have been through now, this was probably one of the worst, yet one of the best days of my life.
It was horribly sad and one of my worst because I never in a million years could have imagined that I would have missed out on being a 25 year old, onto my 26th year, with a PiCC line in for five months and two months of a power line in my chest, not knowing when I will get it out for sure, and going through what seems to be like a nightmare that I can’t seem to wake up from. You get worse before you get better, and I never could have imagined what was in store for me…
One of the best, because I finally had some answers. Some people would probably find this hard to believe that it was one of the best, but when your quality of life begins to deplete, you want answers. You want someone to listen, someone to fix it, someone to care. Dr. S listened. I had been waiting for answers for years, and he gave me an answer and has been a great source of information, treats patients aggressively yet cautiously, and goes above and beyond any doctor that I have ever met. He gave me a sense of hope that I could get better.
And then my test results came in.
PCR test for some reason, two of the three had blood in them and the only other test was negative. Dr S then sent me in for a Western Blot (even though he was already treating me as a Lyme patient) and came back positive.
31 kDa IND
39 kDa +
41 kDa +
18 kDa +
41 kDa ++
It was official. On paper. Igenex, ILADS, IDSA, and CDC positive. I have Lyme disease.
When Dr. S. told me the news, I didn’t really know what he meant, but I know now..”You have Borellia and everyone is going to agree on that. What people won’t agree on is the treatment.” It is like kicking you when you are down when you are so unbelievably sick, and people either don’t believe in Lyme, or don’t think it can last past 30 days, is easy to cure, or be as severe as it can be. Especially those in the medical field. It is an extremely controversial and political battle that I don’t see a remedy for anytime soon, unfortunately. That is why it is so important to advocate, and hope that people will listen.
I had no idea what a tough journey this would be. I would not wish what I have gone through on my worst enemy. Like I said, you get worse before you get better. I have been worse since the third or fourth day I took doxycycline. My “leg problem” became a REAL problem, a scary problem.
I began to shake, and everything throughout my body hurt. My leg numbness became LEGS numbness. Many of these antibiotics have caused me terrible nausea. I almost blame Omnicef for starting my tics. Since Omnicef, at the end of October, I have never been the same neurologically. If you have not seen it yet, there is a clip on my June entries that I sent to Dr. S to see what the heck I should do.
It definitely stirred something up in my crazy head. For many, this is an invisible illness. For myself, this disease has been anything but. Shaking, rocking back and forth, myoclonic jerking, Tourette’s-like outbursts, and just plain looking sick.
I don’t know which is worse. Looking fine and being sick, or having people know there is something wrong with you as it is blatantly obvious.
It was at that point that co-infections came up. Although the co-infection tests are even more unreliable than the Lyme tests are, I tested positive for anaplasmosis and mycoplasma (which can be tick transmitted, discovered on a later test), but have and will be on future treatments based on clinical diagnosis for Bartonella and Babesia. And I think they hit the nail on the head on both.
Dr. S decided and recommended me to go to see Dr. J in early spring. He knew I needed more help than he could give me, mostly neurologically, and so I went. Quite a hall, but I am sick of being sick, and it was time to see the best of the best. And so a new chapter began.
There have been some good days that I had much more functionality, more so during my second “break”, that I took because my immune system was crashing, my organs needed a break, and my body just needed time to level out. It seemed like at that point I was getting phone calls and e-mails constantly with another deficiency, another disorder, another infection and was constantly at the hospital, getting a test of sorts or appointments, one after another.
I think my two best moments throughout being so sick were during my second break, one being the first time that I made it through my local grocery store with Dave. It was only to pick up a few things, but I hadn’t been to the grocery store for nearly a year. You get really happy about the small things, especially when you haven’t been able to do them for so long.
The second was also during my second break, when Dave took me to the ocean as a last hurrah, since I was going to be headed to DC and knew I was going to be starting IVs again. It was a beautiful day, we spent it laying on the beach and the ocean water was warm enough to go in, and I played in the waves as they came crashing to the shore. We went to one of my favorite restaurants on the way home. It was a good day.
There have been a lot of scary moments, the worst was on my high rocephin dosage and cipro at nighttime while in bed. I thought something was seriously wrong; I had a hard time breathing and was in so much pain I did not know if I would wake up if I fell asleep. I did nothing. I said nothing. I turned over and looked at Dave, seeing how peaceful he looked. I have shared this memory before, but that night, for just that one night, I gave up. I didn’t care.
I didn’t understand how the hell someone could feel so terrible and still be alive. These were the times that I had several days that I couldn’t as much figure out how to hold and use a stapler at work, or hold a fork to be able to eat. Constant seizures and the tics were nonstop. It seemed never ending. I hope to never go back to that point in my life ever again.
Having chronic illness has taught me some of life’s lessons. It makes you not take life for granted and live for each day. It makes you realize just how important your health really was to you. It makes you realize who is your friend and who is not. Some have disappeared, and some have been so caring and supportive throughout all of this. These amazing people I owe about a million and ten favors to. And even though I have been sick for so long, there is such a thing as true love and a “for better or for worse”. Many people aren’t so lucky.
Despite all my difficulties, my spirits have remained high, and for the most part I have remained positive, and the rainbow, butterfly, unicorn feeling has kept me going throughout all of this.
Without it, I don’t know how much worse I could have been, how much worse I could be. Positivity is needed tremendously for healing. Positivity and hope.
And now one year later, I am not sure what lies ahead. I just keep that positive feeling, appreciate the good in life as it isn’t all bad, and pray that I will get better, even if it is just one day at a time.