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.

it's funny you mention your symptoms before the neuropathy came on the scene, since I've been thinking about it in my own case. In fact, last night my wife and I spoke about how before my heart palpitations and any of the dry flaking skin on my hands or numb hands, 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. We couldn't get it out and it would come back every week, mostly pink but also some black, and we finally changed the tub. So, perhaps my situation goes back to mold toxicity. Just trying to think about my past and find the cause.

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.

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.

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.

Madisongrrl - I'm glad you have finally found an avenue to pursue regarding the cause of all your issues. It's just amazing how many different things can cause the crazy neurological symptoms that all of us experience to one degree or another. And how hard it is to identify what the cause (or causes) are.

Best of luck in your ongoing treatment. Lyme disease is a tough nut to crack, especially if you've had it for a decade. But based on all your posts, it seems you are very tough and resilient - and will never give up. If anyone can beat lyme, I think you can.

Madisongrrl - I just wanted to tell you that I had the unknown rashes for 2 or 3 years (Lyme symptoms for decades), and I had an Integrative doctor tell me that supplementing with 50 to 100 mg of zinc would help the rashes. I was supplementing, but only 15 mg of zinc. When I upped my dose of zinc, the rashes went away!

Zinc is overlooked I believe. I never had rash type issues until all the topicals I use and supports on my knee and ankle which cause some abrasions. I started taking 25-50mg Zinc Picolinate daily not that long ago and glad I did. I also LOVE zinc oxide for healing rashes/abrasions.

Maddisongirl well done you for tracking down and proving Lyme. My cousin, who lives in France has Lyme. Hers was confirmed by an excellent primary care doctor where she lives who has a special interest in Lyme. Unfortunately it crossed the placenta of both of her young sons while in vitro so they have to take treatment too I believe. She does very well on the treatment - some sort of antibiotic along with a herbal medicine she gets supplied from Scotland where her family are from.

I was investigated for Lyme a year ago although I felt it very unlikely because I've never lived in a Lyme area. The test came back negative anyhow and it was one run by my neurologist who dies see Lyme disease in his area of Scotland where it is increasing. I am interested in the fungal causes David mentions here. My small fibre neuropathy seemed to start prior to my RA symptoms starting. I'm getting nowhere with investigations however but your news has inspired me to persist badgering my doctors to get to the cause as its progressing slowly but surely and I have this horrible ache in my pelvis now which means it has risen from my groin and seems to be getting worse in my face now too.

I hope you have great success with treatments. Mat X

Mat, just in case you haven't seen this thread, if you're interested as it seems you are:

http://neurotalk.psychcentral.com/thread230382.html