Pins and needles -starting to get worried- please help

You ever see a neurologist about it? Bloodwork ever show any signs of autoimmunity? Ever have burning?

Yours really does sound like a large nerve problem because you described muscle weakness with pins and needles only on one side and radiating along the upper back and down the arm. SFN tends to be more of a burning or a buzzing, is usually diffuse, you can feel it all over an area and near the skin. And it’s usually either all over the body or just in the hands/feet/calves. Sound like yours?

She described buzzing all over. Plus the tingling in the tongue and the fact that she said it was progressing and scaring her made me speak up, if it’s not SFN it’s something you’d want to at least look into.

I’m not trying to scare people and get everyone riled up about SFN. There was that guy the other day who I really think needed to get tested, and just when I see someone w symptoms that sound similar or nerve pain that doesn’t resolve I point it out, cuz it does seem like a lot of people fall into the mindset that they can ignore it because it will eventually resolve w their other symptoms, which isn’t always the case.

k07 I will try those forms, thank you! Do you notice a decrease in the numbness vibrations when your b12 levels are good?

Also I forgot that there is b12 in the Rawl’s protocol. It’s hydroxocolbamin at 100 mcg.

This is just a thought. I tend to sleep on my left side and am wondering if that’s contributing to left arm / hand issues. Probably not but thought I’d mention it. Would hate for this to have developed into sfn.

I identify with your perspective here, k07: "What are the pros of being diagnosed with SFN if you’re not willing to take meds that cover up symptoms (gabapentin, lyrica, etc)? The cure would be finding the root cause, right?" I would add healing the dysfunction, not just the root cause. I don't want to hide my head in the sand, but seeing Lyme-ignorant specialists and going through the testing process can be so invasive, expensive, and demoralizing, when the end result is the same regardless. I'm not going to take most drugs used to treat most things, so I feel like my time is best spent on the other stuff. Many disagree, but I know that my quality of life is better when I'm not jumping through the medical industrial complex's hoops just so they can confirm what I usually already know. I know I am quite jaded, and one day this might make me miss out on some productive angle of medical care, but at the moment I'm not up for the ordeal.

With SFN, are there alternative treatments?

Kitkate said...
Orbiting can you tell me what your symptoms are? And how long have you been drinking the cistus? I get mine from Dr K’s associated co. In Germany.
Interesting side note. My mom who does not have lyme has cured her diarrhea with cistus.

I've only been drinking the Cistus tea for 3 days, and the most I've had in one day is 1.5 cups because I seemed to be herxing from it and I wanted to slow down my symptoms. I got it from BioPure, my LLMD recommended it.

Background: I've probably had Lyme and Bartonella my entire life (tested negative for Babesia, but probably have that too). I was misdiagnosed with MS for years -- I have lesions all over my brain, saw 4 neurologists, had a spinal tap years ago, have tons of tingling/numbness/nerve symptoms, the "MS hug," balance issues, spasms, heat intolerance, migraines, head pressure, ice pick headaches, stabbing nerve pain -- it's all just the Lyme and Bart. None of my symptoms are really constant, everything comes and goes.

I've been treating with Buhner herbs for almost 6 months now and I'm doing better.

Since I started the Cistus tea I have crushing bone pain in my left hand that comes and goes (my Bart symptoms are mainly left-sided, lots of nerve stuff), something like the MS hug but it's new -- it's more like a pulsating, throbbing rib pain, lots of joint pain and cracking in weird places like my wrists and thumb (this is NOT a usual symptom for me), stiff/sore neck, my upper back has been going numb worse than ever, leg spasms, sinus pain, trigeminal nerve inflammation (feels like a pulsating and vibrating nerve inside my head). That's all from 1 cup of tea!

I've had over 30 symptoms from these stupid diseases -- not all at one time, thankfully. There are just too many to list. Last March my tongue and left side of face went numb -- that was when my trigeminal nerve was really badly inflamed, and I also had burning top of head pain with that. In 2018 my right foot went numb (it lasted almost 6 months), my arms have gone numb a lot in the past, recently for about a week and a half I was waking up with numb hands -- it all comes and goes. I've also had trouble swallowing in the past. This crap is all "normal" for me.

So I am well versed in all these crazy symptoms. For years I had the neurologist telling me it was MS, so now that I know it's Lyme I just don't panic anymore, I just roll with it. I'm also on LDN, which is really helping my mental state -- before the LDN I was severely depressed and emotional.

Stop the tea for a few days, detox more and see if you feel better. I really wasn't expecting to have entirely new symptoms from tea, but that's what's happened.

Post Edited (orbitingaround) : 1/16/2020 10:34:05 AM (GMT-7)

k07 “I’m somewhat resigned to the idea that it’s permanent at this point. Some other symptoms I suspect may be related for me are: muscle cramping, fatigue, insomnia, bug crawling sensation and possibly heart palps. ”

If you still have the other active symptoms - don’t you think it’s possible that your vibrations could be part of that?
And could resolve at some point?

Thats where I'm at too, all comes back to gut health. Trying to figure out how i can actually do Paleo without knowing how to cook, and literally just got a prescription for enteragam. Supposed to shut down inflammation in the gut and help rebuild the stomach lining, which is the whole game when it comes to gut health