burning feet

Hi everyone,
From 2012-2016, I went through a long process to eventually get dx'ed by a LLMD with probable lyme. I had a bunch of symptoms - nausea, yeast infections, fatigue, all over body tingling, etc. Some symptoms would come and go while others were more chronic. Fast forward to the LLMD in 2016 who did blood testing, and found I had low CD57, positive for Babs and RMSF, and then I had Indeterminate on Igenex for IGG with the 2 bands of 31 and 41. The results he actually said were "as grey as you can get" but that I could do the epitope test to see if band 31 was due to lyme - I did it, and it was. He put me on doxy for 1 month, and then I found a functional doc who did a series of Bee Venom treatments. All my weird symptoms went away, except that I'd get a monthly yeast infection around my period, had some issues with parasites that we had to treat, and some general GI issues. But the big/bad symptoms went away and have been doing well for the last 6 years.

Fast forward to April - I went on a work trip to Japan and while I was there, noticed that I was having some balance/dizziness and just felt a bit off. I got home and all that went away, but about a week or so later, I started getting a weird burning sensation in my feet. I thought it was like athletes foot or something at first, but then realized it was more like a paresthesia, and even starting to feel the sensation creep up my legs a bit. For the most part the symptoms have been confined to my feet and legs, thought there have been a few on/off moments where I thought i felt a little tingle in fingers.

Back when I was trying to figure out if it was Lyme, I was super focused and paranoid about MS. Now the worrier isn't sure if this is a relapse of Lyme or something scary like MS. My functional doctor does interesting testing called "autonomic response testing" where they put vials and stuff near you to see how you react, and he said I showed up strongly with the lyme. We've been doing Bee Venom for 3 weeks and I'm on herbs (Biopure, Cocktail) but the feet and leg issues remain. So my worry is really high about other issues and is this really lyme and could it be a flare up 6 years later? I would have thought it wouldn't be so neurological with regular lyme -- my functional doctor did his ART testing for Bart as well given the feet and didn't show anything on that. I scheduled an appt for a neuro just in case as well.

Can anyone relate to this from a lyme perspective? Is it possible to go into "remission" for like 6 years for the most part and then get hit with neuro stuff like this? Also curious for your thoughts on ART testing and how legit, etc. We did an antibody test last week for lyme and it was negative but even back in 2012, etc it was typically negative.

Years ago I was worried about MS too.....

1)The feet/limb tingling can be many things.....triggered by many possible complications with and or with out infections. Hormone surge or sudden change- thyroid and adrenal / sudden stress event / cortisol does that to me.

2)"Also curious for your thoughts on ART testing and how legit, etc." - I "tested" my chiros ART results on me with medical issues that I knew...but he did not at the time. His ART results were....correct. Was this just pure luck on his part? You decide. I then tried this with a less experienced Dr and she was only about 3/4 correct.

(Note "ART" has some other very similar practices also, I forget the other terms/names. Tells you the same info though.)

bartonella in particular is associated with symptom of burning feet - i have had it myself

Lyme is associated with a wide variety of paraesthesia - and in general could in theory relapse at any point - as its not clear if w can ever fully eradicate it once infected - but instead we reach remission when our immune system gets it under control - much like the many viruses we get a children -
but that also means it can relapse - especially after an stressful event - like travel - or anything that suppresses the immune system

so as usual with lyme - things are often very grey with multiple possible causes

that said i think several long term antidepressants that act on the serotonin system are known to cause long lasting and often life altering withdrawal effects in people who have taken them for a long time - including neuropathies - i don't know if the one you are using is known for that - but if it is - that seems like the most likely one to me in your case.

a trial of increasing the dose again could potentially give you another data point for your considerations

long term you may still want to taper off them - but just need to taper more slowly ( i know some people take years to taper off some of these drugs due to side effects of withdrawal )

Not sure about the burning feet aspect, but tapering Effexor can really be a challenge.

Many years ago, when doctors simply labeled me as a hypochondriac with anxiety and depression (11 years before Lyme diagnosis), I was put on Effexor in an effort to please my then wife and try to save marriage.

I never did well on it, and coming off was really a battle. Brain zaps, mood fluctuations, irritation etc… While tapering I threw a CD rack through a window. Opposite of my personality. Dizziness was bad.

So, as Garzie mentioned, I went back up then went VERY slow to come off. His idea is what I’d suggest also.

As far concern for MS, that is understandable but doubtful. Not saying it’s not, but with your previous testing and Lyme is there forever thought, you gotta think it may be.

Also, could be mimicking autoimmune or even be some type autoimmune. I went years thinking my feet were all about Bartonella. Turns out it was Sjogrens.

None of this is to try and worry you, but eliminating things is just as important as getting a positive. And knowing what tests are more definitive than others is critical as doctors aren’t going to spend the time learning you as much you can. Only reason I know I deal with Sjogrens is I pushed for a lip biopsy after two or more years of negative blood tests for it.

Hi everyone. I'm back. So I've been continuing to try to treat lyme via herbs and also did a bunch of bee venom therapy. I am also working with my holistic doc to address some potential heavy metals. I did the doctors data test and i was in the in the "yellow" for lead and arsenic (though the lead was a provoked EDTA test, and my doc said he's seen higher). He does pick up heavy metals when he tests me for it. The problem is my symptoms aren't getting better. I also went to a neuro to make sure no MS and they said i had a totally normal neuro test and not to worry about that (I was already figuring it wasn't but I've always worried about that). I had an EMG and the results were that my right medial & lateral plantar sensory nerve conductions have reduced amplitude compared to the left but with symmetric latency and conduction velocity (whatever that means). Needle EMG part was OK. When the neuro PA called w results they reassured no MS and that it was "compression neuropathy" and to go to a PT. Not sure what tells them from this report that it's compression and why it wouldn't be from an underlying issue like lyme or heavy metals. We checked B12, diabetes etc.

Any thoughts on the EMG results and meaning? Would lyme/metals cause it to the level where it shows up on a test like this and is it reversible?

I feel like I'm trying everything- taking ALA, Vitamin B complex, gluthiothione, chorella, EDTA, jsut started neuro antitox, and the "Cocktail" (biopure) for lyme. It's been 5 months with no real resolution.

I did not read all of these posts in detail so forgive me if I'm missing something, but I had symptoms similar to what you describe in the first post, Jabele, except for me it was more in my hands and less in my feet.

When I treated mast cell activation syndrome (including a low-histamine diet and DNRS limbic system retraining) those symptoms went away. Bee venom can exacerbate MCAS, so if that's part of the picture for you, then that could be why you're not seeing improvement. Another possibility is that the nervous system issues are from mold toxicity. Any change you're being exposed to mold?

Treating MCAS also made me vastly more functional, and within a month took me from bedbound to 80% of my pre-tick health. Getting out of bed (which probably was compressing nerves along my spine) probably helped a great deal in terms of structural issues.

I would recommend trying the PT to address structural issues and help identify daily ergonomics that could be contributing, along with anything that can decrease your nervous system's reactivity. Stress avoidance, mindfulness, adaptogenic herbs, cannabis, tapping, therapy, acupuncture, craniosacral therapy, acupressure points, limbic system retraining, yoga, breathing exercises, curcumin, quercetin, magnesium, no sugar or caffeine, vagus nerve toning exercises....

I'm really glad to know there might be something else at play here. It's true that everything started after Japan so maybe I got exposed to something. My doctor is actually good at looking for and treating mold but we never discussed it so when I see him in 2 weeks I will bring it up. I definitely feel like something has been missed that goes beyond lyme and metals. Thank you!!