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Originally Posted by DavidHC
It sounds like you're in very good hands. I'm happy for you. I'm also glad to hear they offered you an herbal option - out of curiosity, what was it? I especially think the one step at a time and further testing, given your background, is a sound course of action. With so much incompetence, it's nice to finally something like this. .
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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.
Quote:
Originally Posted by DavidHC
I started to get soars on the bottom of my toes, and that then we thought it might be due to the large amount of mold in the bathtub at the time...... So, perhaps my situation goes back to mold toxicity. Just trying to think about my past and find the cause.
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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.
Quote:
Originally Posted by DavidHC
I'd be very interesting in anything more you have to say about your own background. And I've also had rashes, or itchy spots, but I think it's not so much rashes as it is a histamine overload.
Anyway, I wish you the best as you begin to heal yourself and try to discover more of the puzzle.
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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.
