Please... don't apologize for the long post! I need a friend! Oh my gosh this is lonely! Thank you for taking the time to write. I keep thinking that posts here will show up in my gmail account... I guess not. Is there any way to make that happen?
What is baffling to me is that I have now had two episodes of ...whatever this is. In 2009 I experienced a sudden 30 pound weight loss, and was absolutely wiped out and had to take over a year off work. I was encouraged to consider the diagnosis of Lyme, and get on a one-year course of IV
Antibiotics . One lab (Igenex) tested me positive for Lyme... all others did not. I did not want that diagnosis, something told me it would be an endless rabbit hole that I would only get worse in, and I refused to buy into any of it. Yet... there was that one positive lab result that has haunted me. I don't recall ever being bitten by a tick, but of course, in the LYme world, that's not necessary.
In 2009 I had a constant sore throat and utter fatigue... so I had all my
root canals removed, and went entirely gluten free, tried to heal my gut... and slowly, slowly, I recovered. It took 2 years. By far the worst symptom was depression, especially in the winter. Because my lungs were so bad I just spent all the time I could in the desert, but just getting there was a challenge. I would make that long drive, and collapse.
Once I climbed out of that (without ever having what I considered to be a legitimate diagnosis) I just prayed it was over and behind me. I didn't expect it to come back in 2014. My son died at the end of 2013, so when I started to lose weight again, and go through all the same familiar symptoms, everyone figured it was depression. But I was eating a lot... but the old twitches, tics, and all the stomach/nausea and constipation came back. Terrible insomnia, pacing. Visual changes. Iron loss. And, my magnesium levels have stayed way below normal, no matter how much magnesium I take, soak in, spray on. It won't come up!
Lyme was suggested again (but the Lyme doc I saw now hates to put people on
Antibiotics ... glad it wasn't me). I had an endoscopy. Colon cancer was ruled out. Parathyroid tumor. Amoebas. Celiac. I think we decided to go with Celiac, since I am also diabetic. My doctor said "I want you to commit 1000% to gluten free... not a speck~!" So I have done that. It's helped, but I can tell this is not the bottom line.
And then... believe it or not, it was a "medical intuitive" who thought he "picked up"
parasites in me about six weeks ago... and I went hunting around for large
Ascaris worms. He later said "No... I was seeing something much smaller... tiny, and in your blood and brain." So.. what the heck... I went back to my regular doctor and asked him to test me for parasites. He chose strongyloides... and when the results came back positive, he retested me... and then he was more shocked than I was. He said "I was just humoring you, Lori... but this is serious. This is going to take some time to get rid of these... but you have to do it."
By far the hardest for me is mornings. How is it I can go to bed feeling finally ok, like I am really ok... and wake up feeling like I was hit by a truck. It's deja vu every single morning. It takes hours of staggering around to get my head up... and I've always been a morning person. Coffee is my only friend these days.
The one thing I am still experimenting with is turning off all the circuit breakers in my home at night... and I would like to start switching off the wi-fi too. I have noticed that if I sleep outside, or go camping for the night with my kids, I wake up feeling SO much better. So, I wonder if I've just become that sensitive... or maybe the
parasites don't thrive without radiation all around. I've even considered just going out to a forest for a month, and letting nature do its thing.
PLEASE share your symptoms and anything else with me. I'd really like to know how you were... how you ARE... how you have gotten through this. Thank you so much for taking the time...
Lori