I have had Lyme for 4 years. I have struggled with being sick to the point of being unable to work on and off over the past four years.
There may be a pattern to these episodes of disabling illness. My severe symptoms start in February, to the point where I can't work, which continue on for 2-3 months. This happened in 2011, 2013, and 2014. In 2012 I was already quite ill before February began; in the other years, I was doing pretty well and then suddenly got sick. My symptoms have been largely neurological: severe fatigue, brainfog, pre-syncope. I have a lot of difficulty staying asleep, although Trazadone has been a godsend in that department.
I was diagnosed with Lyme in September 2011, and was on antibiotics from September 2011 - July 2013 under an LLMD. Food allergies played a role in the 2013 episode, but I also had severe fatigue if I was on my feet for more than 5-10 minutes, which my LLMD diagnosed as POTS. The POTS was also the biggest thing keeping me from working for the past month and a half. It's improving but I'm not back to work yet.
Also, this year, we tested my cortisol levels shortly after my symptoms got severe. My cortisol was were high according to a saliva test, but normal according to a blood test. The morning saliva sample was particularly high (21 ng/ml, when normal is 3-8 ng/ml). My stress level has been pretty high, because I'm trying to finish my dissertation. I probably was eating more carbs than I should have, and I did have alcohol shortly before I got sick again this February.
The fact that this always happens in February makes me wonder if there's a reason. When I was a teenager, I had seasonal affective disorder, and my depression would get bad every February or March. I'm wondering if low levels of sunlight exposure is making my immune system weak, or throwing something else off (adrenals?).
My LLMD put me back on antibiotics and Nystatin. (Which I'm not crazy about, since antibiotics have already given me a ton of food restrictions.) I have been on a number of supplements and herbs, too many to remember. I am currently on T3, cordyceps, GI Revive, ATP Fuel, K-Pax Pro, Adrenal Plus, Resveratin Plus, turmeric, Nutramedix Adrenal Support, and the Cowden protocol.
I have been treated for babesia (two courses of Mepron, one course of cryptolepis) and for heavy metals (oral chelation). I tested positive for Epstein-Barr and HHV-6 a year ago. My Lyme western blot was Igenex positive, CDC negative when I began treatment. We re-tested and I have one less band now (not sure if I'm still Igenex positive, I'd have to check). Other recent bloodwork has been normal (Vitamin D, CBC, chemistry, liver) although my platelets were a little low.
I am grateful that I'm improving now, but I have major concerns about my ability to support myself after grad school. I'm not sure if someone who gets sick so regularly can hold down a job.
Thanks for any suggestions you can offer.
Posts: 25 | From PA | Registered: Sep 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Don't know why, but happens to me also, Jan thru March.
Read somewhere LL's won't stop abx in winter, will wait till spring.
But don't know why we're worse in winter.
Love your forum name. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Thanks Greta! How do you cope with symptoms recurring every year? Do you work?
I can work pretty well for 9-10 months out of the year, although my output is lower when I first come back to work. I actually was working 12 hour days before this last episode. Which I realize might be part of the problem. I love my work but one cannot be a grad student forever. I'm not sure how I can find a job with flexibility after I graduate.
Posts: 25 | From PA | Registered: Sep 2011
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