lingering tingling etc

[jkv44]

Morning,
making some good progress with the lyme.

My only main constant issue is the tingling in my right foot and sometimes finger tips. I find this all annoying to say the least.

My llmd said that nerve damage takes the longest to heal.  In the meantime, is there anything or med you have been on that helps with this>

I'm currently on doxy, omnicef, nystatin.

Help!!!! JKV

[Tracy9]

Wow, you guys are really describing the symptoms of small fiber neuropathy, especially Wonko.  I strongly suggest a punch skin biopsy from a preferably Lyme Literate neurologist.  This is an autoimmune disease which is degenerative and incurable, and caused by both Lyme and Bartonella.

I was treating like crazy for Lyme for almost six years, and now have found my Lyme is almost eradicated, and that what I am experiencing are primarily symptoms from bartonella and small fiber neuropathy.  My punch skin biopsy was positive.  So now I am on IVIG for it.

I fear for all the people who have it and don't know....you can treat Lyme forever but never cure this.....without treating it as well.  Low dose naltrexone IS another treatment for it.

[Hope75]

Wow, all my story here.  Glove and stocking distribution, but can move to my scalp and the most annoying was in my ear canals - tingling burning, cold, creep crawly etc sensations.  This was my very FIRST symptom in 08/2006 in one big toe and it just spread from there.  

Three years later, it has greatly improved.  I have the four week cycling too, but just started treatment in Dec. for my lyme (from an LLMD).  Before that, I had taken Doxy to no avail.  I don't have good sensation in my feet, because I have lost the pin ***** until my ankle and vibration sense.  If the ground is hot and I'm wearing flip flops - forget it - its like I'm drunk.  I have poor balance because I can't feel my feet.  

You're right - the stupid painful nerve conduction studies will NOT detect small fiber neuropathy - which is essentially what this tingling/burning stuff is.  So, I went to Johns Hopkins where they do a small fiber skin biopsy to see if the small nerve fibers are at fault.  Well - that was "normal" with some notes to the side about "excessive branching" and "fraying".  They count the nerve cells in the biopsy and if the "density" is normal, it's "normal".  However, my cells that were there didn't look normal and they had NO explanation and said WNL.  They sent me home with my Neurontin (which makes me a little loopy, not a fan, unless its actually burning and hurting).

A couple of months later I decided to get my results of every Johns Hopkins test done that day.  GUESS WHAT?!  Gazillions of blood tests were normal, and what's the only abnormal tests.  Lyme ELISA = POSITIVE.  Western Blot NEGATIVE.  Ugh.  This all led me to an LLMD and my positive Igenex lab.  

Long story short (sorry about that).  Tingling is probably something we will have to deal with.  It's the burning pain that I can't handle.  I take Pamelor at night to help me sleep and it's supposed to help with nerve pain.  I think it takes the edge off.  If it's just tingling, I'm thankful.  And yes, I stay busy busy busy, or I sit and linger on my symptoms of Lyme.  Yucky.  

Take care and I hope this lets you know your not the only tingly one out there!  :0)

[22dreams]

I agree with Wonko. Tingling I don't pay much heed to.
Although Roving numbness & other symptoms that come-and-go are a part of lyme, some do stick around. And it's entirely individual.

I have similar loss of sensation (glove effect) that Wonko describes that has stuck around. The loss of function (grasping/holding) took some adjustment on my part & I still occasionally get frustrated. I have similar loss of sensation in my shins, feet(although not as bad as my hands), throat/neck & face.

It's par for the course. The problem is, and I don't know if you've found this to be true, Wonko--that nerve conduction testing really only picks up on people who have nearly completely lost function. I know ppl who can step on something, be bleeding and not feel it--yet EMGs are within normal range (huh?).

[wonko]

Just to clarify, I referred to cost figuratively, in terms of side effects.  Neurontin is available in generic ("gebapentin") and is also available in many sizes of pills to help get the right dosage for the the person.  Lyrica is the newer version of Neurontin, and to my knowledge is not in generic form yet.  It also seems to have a higher incidence of side effects based on what I've read, and from my personal experience.

Yes, the tingling is so distracting and off-putting, but for me reminding myself that it wasn't hurting me helped me ignore it more.  But it's tough, our body uses such signals to alert us to a problem and it's not easy to ignore the call!

[jkv44]

Hi,
thanks for the encouraging words. You are right the tingling is not physically scarry just unerving to say the least.

I was testetd about a month ago for he b12 and other deficiencies via my new llmd. He thinks that I also have babs as well.

I have periodic tingling especially when its that wondeful time of the month. Everything seems to flare.

I have been treating for about 6-7 months with major inprovements when I added doxy a few weeks ago. I am having so many more better day and even the four week flare isn't as it used to be.

I don't know about you, but the more I stay busy, the better. I have this week off due to spring break and although enjoy the time off, all the extra time reminds me of the lyme and tend to focus more on it.

I am taking the sublingual b12 and will bring up the b12im when I see the doctor in two weeks. I'm just going to wait and see if this will help.

I'll also look into the neurontin and check out the price etc.

thanks again for giving me a new prespective on the tingling.

Janice

[wonko]

I had persistent and distracting tingling for a full year.  It was non-stop in my face, fingers and toes, and come and go (often for hours to days at a time) in other areas, with the greatest intensity further out on my limbs/head but reaching even my core.  It would often return to the same exact spots, too.  I had a patch on my upper left thigh that I could outline with a marker that would tingle on/off for days at a time.  The left side of my face was far more affected than the right.

It started out in my face/hands, but eventually became an all-over problem.  At one time or another, I had distracting tingling everywhere except my nose and the tips of my ears.  I have felt it inside of my mouth (tongue/gums), even in my throat, and in my abdomen.  My tingling was sensitive to my posture, and if I was prone it would spread more than if I was sitting/standing.

I can sympathize with how upsetting this can be.  The good news is, none of that darn tingling ever did a darn thing to me.  So while I can relate to the psycholigical distraction of your body constantly getting these messages that something is wrong, I can also say that it can be a fairly harmless experience.  

I will say that my tingling is greatly improved, but not gone.  I've been treating Lyme and Co. for about 1.5 years.  Also, I have loss of sensation in a stocking/glove pattern, so if you use a pin on my feet and move up, I don't feel much until about mid-calf.  Same with my hands, though I think it's worse in my feet.  I know at the start of all of this my sensation was tested and did not have this deficit.  Sometimes I wonder if I am still tingling, just less aware of it now.  I also wonder if I'll regain sensation, but even if I don't, or if I only regain partial, it's not severe, just more of a creepy reminder of my tingly past.

B12 deficiency can cause tingling.  However, if that is not the cause and it's really just Lyme and Co rattling your system, then supplementing will not help.  I did take B12 sublingual during the peak of my tingling, but noticed no improvement.  I also got B12 shots a couple of times, to no avail.  But at least I ruled out the deficiency.  

Neurontin was effective in masking some of my neuro symptoms, but it has side effects so that's a cost/benefit decision for you and your doc.  I have no experience with LDN, but I know overall it's a controversial treatment (some take it for MS symptoms as well, and I think its origins are for use in treating heroin addiction, at much higher doses than what is used for MS/Lyme treatment).  

[jkv44]

Morning,
thanks for your wonderful insight. I will bring this up to my llmd when I see him.

Over night, the tingling for some reason has gotten worse. I'm going to call him today and see if he can see me soon.

I've heard of the above med you mentioned just never knew what it was for.

Have a good day. Janice

[22dreams]

Janice,

Good to hear a report of progress (without setbacks). I was doing better until my protocol changed when LLMD had to stop practicing/treating lyme here in Massachusetts. Down a doctor with really only one alternative-- a doctor who has a different school of thought. Maybe some of what she theorizes will turn out to work in the end.

One thing that this MD & some other LLMDs use during treatment or post treatment--depends on their take on it-- is Low Dose Naltrexone.

It supposedly helps to regulate the immune system and help cease the auto-immune reactivity that is found in probably at least 1/3 of lyme patients (who really knows?).

Also, has anti-inflammatory effect, increases sensitivity to endorphins (pain killer) and reduces free radical production, which all us sick people are abounding in.

I don't know that it actually repairs damage, but it helps to modulate the immune system to assist the body to stop any autoimmune reaction going on & the corresponding neuro or other sx. That is my rather hazy understanding of it anyway.

My current doctor uses LDN post-treatment when the infection is gone. God knows how she determines that when autoimmune reaction can continue for months beyond remission or eradication of the infection.

Anyway, that was the first thing that came into my head. If I think of anything else, I'll be sure to share.

Keep it up!

[jkv44]

Hi Jackie,
thanks for the kind words of encouragement. I don't have tons of tingling etc. It's just annoying when it pops up. It comes and goes as well. I had a bigger issue with it early on.

Now it seems to pop up here and there.


Looking for some insight.

Janice

[JackieCalifornia]

Glad to hear you're making progress -- that's wonderful news!

I haven't had much tingling etc. and it comes and goes on its own, so it's not something I've had to deal with at a major level.  I'm sure someone else here will have some thoughts.

Take care.