Madisongrrl,
Thank you for all this. Where to start...
First off, I hope you had a good weekend, though it must have been strange given the bomb that was dropped on your lap. But, again, I'm glad you have some answers.
You've had quite a few twists and turns. I am really rooting for you to improve, and wish I could do more than just hope and wish.
I asked about the herbal antibiotics, because I've done months of research on them and intend to begin introducing a series of them over a two-month period. If I can be of use, let me know please.
I'm convinced that in my case it was some sort of bacterial or fungal infection, or that's my strong suspicion, and that it leaked through my gut, to was worsened by my gut health and poor diet. We'll see what happens in a few months, but one thing you're journey and your efforts have led me to do is to think long and hard about my own past and history. I don't think it was Lyme in my case, though who knows, and thankfully you've provided us with some great resources if any of us suspect it. I think mold or bacteria or yeast are more likely and not via a bite. But who knows.
What else? There's so much here. Well, it made me sad to hear about that nurses poor daughter. But you will definitely have a sympathetic person there, who will actually care. Why is it that more often than not it's nurses who care and are helpful and even knowledgeable, rather than, say, physicians? Rhetorical...
BTW I get night sweats too, but usually after a night of eating very heavily and eating lots of carbs. I was too stupid to stop and realize how I was damaging my body. Now I can't touch carbs, or grains to be more precise.
Well, again, I'm rooting for you. Please let us know how you're doing.
Quote:
Originally Posted by madisongrrl
Honestly I can't remember what the herbal option was. I was too shell shocked to take everything in when I was on the phone with the doctor. Their general approach will be to rotate antibiotics, herbals, and/or supplements depending on what is happening. Some people need IV antibiotics and some do not, in their opinion. I'm sure there will be more in depth discussions at my next appointment.
I've mentioned this before, but it's nice because the nurse that is working on my case has a daughter with SFN who acquired it through a Lyme infection. Her poor daughter needs to wear a cooling vest to go outside when it's hot.
This nurse also told me that they see many people with Lyme who have issues with their trigeminal nerve, like I do. I swear that she knows more than any other doctors or neurologists that I've seen.
The Lyme clinic tested my C4A , which is a marker for inflammation. Mine was high, but not sky high. This test was covered by my insurance (BCBS). If my test result was higher, then I would have been tested for mold. I would imagine the mold test is more expensive and not covered by insurance.
I'm almost 40 now, but even way back in college I had problems with my knees. They would constant swell up for no reason. They would get so painful that I couldn't even straighten them when I was sitting in lectures. I would get night sweats on a weekly basis; I still get them about two times each week. I've always blamed it on stress, but that is probably not the case.
Then I went through all kinds of crazy symptoms after my tick bite in 2005 - including extreme fatigue, nausea, seizures, heart palpitations, and electrical sensations.
I had injuries that wouldn't heal. My toe joint would be painful to the point where I limped around all the time. My foot doctor saw the joint pop out and turn red at one appointment. He didn't know what think. I had a wrist injury from a mountain bike race that never healed. My EMG was negative, but I continued to have burning pain in that wrist. There were too many issues like this to even document.
Things started to get bad in 2012. I had to quit racing mountain bikes. I had an issue with burning tendon pain above my knee that stumped 4 PTs. The pain started to move around my right leg - inside and outside of knee, IT band etc. I was getting tons of pain in my back and hips. I had problems sitting. My back would lock up for no reason.
In late 2013, I had deep pain in my pelvis and swollen lymph nodes that brought me into urgent care. Fatigue started setting in, I was getting reactive to cold temperatures, my fingertips starting turning purple (Raynauds), and I felt generally ill.
In FEB 2014, my sensory symptoms started, spread all over my body, and I've been in a world of pain ever since. So looking back, some of muscle-skeletal pain might have been sensory nerve issues. It's hard to parse out.  |