Posted 9/11/2017 3:17 PM (GMT -7)
I wanted to share my experience so others who are feeling hopeless may feel there is a light at the end of the undiagnosed tunnel.
Some background, I have suffered through 16 years of medical dissapointment, misdiagnoses, and even some docotors thinking I was faking my illness. I went round for round in the depression/anxiety pharmaceutical area, at the age of 13 I was on 7 different medications because the symptoms were "in my head" and depression was a part of a falacy my mind had created, along with terrible insomnia, bacterial infections monthly, a host of symptoms that were chalked up to needing attention. This went on for 5 years before I came into adulthood and chose to stop. Unsurprisingly, many side effects halted, and I felt better than I had in half a decade. The infections continued, bouts of severe fatigue, anxiety, insomnia, random unexplained pain. TWO rare diseases seemingly out of now where. By the age of 25 I had my 1st child, and the fatigue became my whole being, consuming me into a black pit of despair, praying to wake up one day and actually be awake. It wasn't until I was put on 2 different antibiotics at the beginning of 2017 that it truly did consume me entirely. Not just the mass amount of symptoms I grew to find as normal, but insane pain, my joints didn't allow for any movement, the brain fog so deep I lost track of weeks, and the fatigue, oh the fatigue had me bed bound for 20 hours a day.
All of this, and 3 doctors telling me it's depression, or maybe a sleep disorder, and in the end it's fibro, and I need to see a counselor to learn to just accept that this will be my life from now on. Oh, and take 2 aleve a day, you can't possibly be in such pain. In one year, this is the advice given to a 20 something year old, by 3 different MDs, to a person so weak to begin with. I sometimes don't know how I managed to keep trying at that point.
Thus, I began to feel medically abandoned, at times just crazy, the loneliest lump you could imagine.
All I could do was research in small snippets from my island of pain. Weirdly enough, I decided to go to askadoctor on Reddit of all places. This man or woman, who I'll never actually know, or v able to thank fully, told me it sounded like chronic lyme. I'd read about acute lyme symptoms, and felt they didn't match well. But to humor the situation, I pulled out my blood work from my most recent MD. It said negative on my Western Blot, and I was about set it back down, before seeing the notes at the bottom. Positive for band 23kDa. Huh. Lets ask Dr. Google.
Now, I'm not sure if you have googled this particular band before, but the first page alone is peppered with many people with this same test result, with so many similar symptoms, and unfortunately, so many failed by their own doctor. I felt chilled. I felt ill. Could this have been under our noses this whole time? I recall when my doctor brought up doing that test. She said there was no Lyme here, that she really was only doing it to rule out everything, so we could diagnose fibro. If I had spent my summers on the east coast, she might begin to think it was possible. But, they were taking a thousand vials of blood again, so why not run this too?
I looked up chronic Lyme symptoms. Boy I was surprised to find how much this resembled mine. I went to the ILADS site, printed off the information they suggest to bring a physicain not literate in Lyme. I came to this very forum and printed off the master Lyme symptom list. I highlighted every one I had. Those papers were neon yellow I tell ya. My MD was actually quite perceptive at the next appointment. She prescribed doxy and pain meds. Over the weeks I began to have some improvement in a few major areas. Man, I was feeling relieved. Feeling hope for the first time in I don't know how long. Still, she insisted on me seeing a rhuemy. I obliged. He said simply there is no way for this to be Lyme. Improvement? Well, that's probably in your head. The placebo effect is strong. He rans more tests for lupus, and said if they were negative, I had fibro. Again, so confused. I was told to follow up with my regular MD in 3 weeks. Of course I did.
The moment she came in, she was incredibly rude. Smirking down she said sarcastically, "Oh, you're in a wheelchair now?" . I'll note here that she had prescribed it for me 5 months prior. Had seen me in it every dang month since. She was so cold and callous, I began to tear up. Asked me why I was even there. I explained it was follow up for the rhuemy she sent me to. She said all was negative on the tests and it was fibro. If I had improvement, it's because doxy is an anti-inflammatory as well. I couldn't be prescirbed more antibiotics or pain meds, and I needed to just get on with my life and only to follow up with her if I wanted to try a new antidepressant. I had actually brought the Igenex kit that day, to ask for her to order the bloodwork. She initially said no, but finally conceded once I said I need some closure on this at the very least, so I may "move on", as she said.
They of course said the test was negative 3 weeks later, and what antidepressant did I want to start? I said I wanted copies of my test before I made a decision like that. I'd gotten seritonin syndrome from the last attempt, and felt very uncomfortable about that type of medication, all of which she knew.
That's when I ended up with my first post here. I had results from 2 blots, but still, the doubt instilled in me was deep. I still felt crazy. The Igenex test came back with 2 bands positive on one, and indeterminate on the other. Along with my first blot from earlier this year.
I called my llmd and got in 2 weeks later. This was last Friday, now. I sat down with him, and within 5 minutes of reviewing my tests and symptoms, he stated simply, "There is no doubt that you have Lyme disease.". No one who hasn't been chronically ill, disabling so, might understand how that is good news. But I teared up with relief at that simple statement. It took years for someone to hear me, it took all the resources we had to even get to see him. This disease took so much of my life from me, and here in front of me was a person that validated my illness. Not only was I diagnosed with Lyme, but also a Candida infection , mold toxicity, and bartonella.
The only thing to fear now, is the herx, the pain, the recovery. But I won't have to do it alone, in my bed 20 hours a day, with a doctor who doesn't believe Im even this ill. I have found a sense of hope again. I feel so less crazy about this battle entirely now. I'm sure my llmd knows how much he does for each patient, but it is almost impossible to convey the sunshine he allowed into my life by seeing me and hearing me, and not being caught up in a political crap show that is Lyme disease and the proper treatment in the world.
If you are going down in sickness, and you aren't being heard, there is hope. There is help. Fighting for it, and being your own advocate is so hard and exhausting, but your life is worth it. Mine was, and I know I'll be better for it in time. I am referred to a pain doctor, and I'm so nervous he won't believe my llmd, but let's hope we find something to ease the incredible pain in a few days. I have no clue how to talk with him about it, and if you managed to get to the bottom of this long winded story and have tips, please send them my way.