Well I saw my Lyme doctor yesterday and frankly am devastated by the results....
After suffering for the last few months and running what seemed like every test under the sun, I did finally receive some answers, though none of which I wanted to hear.
It turns out that not only am I fighting Lyme and two strains of Ehrlichia, but I also have Babesia, another tick borne disease.
I was tested for this months ago, but was not positive until now. The tests are all titer tests (antibodies), so most likely my immune system wasn't producing significant antibodies to register on the blood work results until now.
After seeing how bruised up I am and discussing my bloodwork, which also showed significantly elevated Cortisol levels, my doctor is also concerned I have Carcinoid tumors. These are benign tumors in the GIT that cause bruising and elevated stress responses which I suffer from.
Symptoms include bruising, elevated corticosteroids, flushing, hot flashes, sweating, heart palpitations, and digestive upset, ALL of which I experience. I hope in a way that I have them. They are a minor surgical fix and then you're "cured".
Knowing me and my luck, I will not have Carcinoids and all of these horrible symptoms I am suffering from are caused by the FOUR diseases I am fighting.
Not a single titer level went down for Lyme and the Ehrlichias. I have not even started to beat any of this stuff. I just feel like I have SUCH an incredibly uphill battle to fight.
I feel like I am trying to climb a mountain on a stationary bike...You work your ass off but don't get anywhere.
I am starting back up on antibiotics. I will be taking Rifampin and Ketek. The plan is to target the two Ehrlichias, then try to kill the Babesia, and then last but certainly not least, the Lyme disease itself.
I have a VERY long road ahead of me...most likely years....
It is hard to wrap my head around the fact that my life has to be put on hold. I do the best I can with the dog training, and I do love it, but I feel like I am missing out on everything I ever wanted....
I miss school. I miss learning. I can't even bring myself to ready the Cal Poly magazines because it makes me cry. I miss it all so much. I miss the dynamic ever changing world of Animal Science.
I miss being surrounded by friends, all of whom have similar interests and passions. I want to be back in Grad school, or Vet school, or SOMETHING and utilizing my brain again.
I feel like it is rotting sometimes....like all of that hard work I did in college was all for nothing....I know its just a pessimistic way to think and I'll snap out of it, but tonight as I sit in bed unable to sleep, it is how I feel.
I am at least thankful that I'm alive, and have the determination, courage, and mental strength to fight this and I really do hope I come out and beat this all one day.
I wouldn't wish this disease on my worst enemy...It strips you of all you're worth and just leaves you feeling like a broken egg shell.
I'm lucky to have a wonderful support system around me, and for that I am forever grateful. I love all of you very much and really do appreciate all of you in my life. Hopefully one day there will be a positive post on this blog, but for now I will continue sharing the reality of my life with Lyme....
xoxo
I was going to ask if you had Babesia, because your symptoms are very similar to mine. Just take things one day at a time; even one HOUR at a time if you need to. You CAN get better, even with Lyme and several co-infections.
ReplyDeleteThe symptoms that you mentioned of the tumors, are the same as my Babesia symptoms, with the exception of the elevated corticosterioid levels (I don't know what that is). I've had SEVERE GI problems for as long as I can remember, and for the first time in my life, since my last round of Babesia treatment, my stomach is totally better! So don't give up hope!
I still have Lyme and other co-infections raging in my body, but since my Babs treatment, I can function again. I've been in treatment for 9 months now, and I can just now function again for the first time in over a year!!! It's hard not to want to throw in the towel when you're sick day after day, but you can have a breakthrough in the blink of an eye!
Even though you're frustrated and down, you still have managed to shine through with courage and determination. I can see that you are a very strong woman and you have what it takes to beat this! Please feel free to send me an email if you ever need anything! alysoncase@gmail.com
I second what Alyson said! I can relate to you so much. Especially about the brain "rot" :) Now when I have energy I play word games (like unscramble this row of letters) or things like that. It was the only thing I could think of that I could do and feel like I was exercising my brain a little bit. But I usually only have energy to do it for like 5 minutes a day and then I'm wiped. It's crazy how even using your brain can wipe you out!
ReplyDeleteI'm about 8 months into treatment for Lyme and Babesia. It definitely has its ups and downs but every once in a while we see the light barely coming from the end of the tunnel. I can't tell you not to be discouraged because I find myself discouraged ALL the time, but take heart, because you WILL see positive results. Praying for you!
I'm waiting for the results from my recent LLMD visit. I had been feeling pretty good for 2 months, went off the abx and other prescriptions but then old symptoms started to creep back, with new ones on their back.
ReplyDeleteMy LLMD prescribed another round of multiple drugs but I'm waiting for my bloodwork results to make sure my liver and kidney results are OK before I start taking them. Not that I don't trust my LLMD, but he's insanely busy right now because we're in such an endemic area so I feel like he's starting to let things fall between the cracks.
What tests did your LLMD run for you co-infections? Did he do the iGenex tests or something else? I'm just curious what other LLMDs are using because I feel like my doc is starting to slack on the research and I need to keep up with the most current events.