Hello:

New to the forum, but NOT new to neuropathic type pain!

My short background: Male, 42, developed burning/tingling sensation in left sole in early 2005 (when 36)...by mid 2005 in right sole and occassionally outer front calves. Was able to ignore until late 2006 where I had the same sensations in palms and outer regions of both arms. By late 2008 same sensations in upper back and by mid-2009 on the rear of both quadriceps.

At this point I sought medical help/tests/pain relief.

Since then, most tests normal. Basically normal MRIs from Brain to Lumbar. Negative repeatedly for diabetes, hiv, normal b12, normal ANA, sed rate and thyroid and in 2010 a totally negative skin-punch biopsy for small fiber neuropathy - this seems to be very telling, especially since I was repeatedly told I have 'peripheral neuropathy' and this lab claims an - 88% + accuracy rating.

Only tests to NOT be normal are: low D3 and very elevated EBV (chronic infection) in 2010 and equivocal Lyme test results in 2008.

Much of the burning sensations (as outlined above) got MUCH more widespread AFTER I stopped about 2 months of antibiotic for Lyme treatment in 2008 - NO I did NOT take Flagyl as I know it can cause neuropathy.

My pain is strictly neuropathic (burning/buzzing/tingling/tingling). Seems to come on upon sustained contact. NOT instant contact like in RSD. I have NO muscle or joint pain, no swelling. Just a hypersensitivity to 'prolonged' contact or pressure which present anywhere from a few minutes or less of contact.

Heat makes the burning skin worse, cool seems to help a little, but not too cold, which in turn feels like a freezer burn.

I've seen several neurologists - they have no idea? Just want to give me gabapentin, which I've taken for almost 4 years with very little relief at 2400 MG/day. I tried increasing, no greater benefit.

My question? What would be prudent tests that may have been overlooked?

I'm curious IF hormones could play into any of this? I DO have some symptoms of hypothyroid, despite a normal result back in 2009.

Any vitamins testing to consider? I was very low in D3 (21 from a range of 30-90). Would it make sense to test for B6? Magnesium?

I ask about magnesium for I will twitch violently whenever I've attempted to take a magnesium supplement - even well BEFORE I developed neuropathic pain.

Like others here, these symptoms are very difficult to live with. The gabapentin has not helped (actually made things worse in that I've slowly gained weight, despite efforts to exercise etc).

I believe there's a cause for everything, and I have to really wonder, do I really have 'idiopathic pn' when compared to the totally normal skin punch?

If it's not PN? And it's not MS or another CNS induced pain? Could it be Vitamins, thyroid, male hormones etc etc?

Just looking for a direction to go at this point of the search?

A kind thanks in advance,

JB

Hello Again:

Didn't want to reply to my own thread, but couldn't find the 'edit' option?

Just wanted to add that I do NOT experience numbness! Just pain

Also wanted to ask IF adrenal function could be a cause or factor in neuropathic pain?

Before I had 'chronic' nerve pain from 2005-onward, whenever in times of stress circa 2003-2004, my feet, lower legs would tingle and then improve.

Never had adrenal/cortisol testing, but again, would this be helpful at all?

Thinking this might have been a problem of mine well BEFORE the nerve pain started since I have not slept well in over 10 years...

Thanks again,

JB

Well, first off... "normal" doesn't mean much today with some tests IMO.

Please get your B12 actual numbers, because lab ranges in US are very low. At the low end of "normal" people can have considerable neurological damage.

Also "normal" for diabetes is not very accurate either. People who are pre-diabetic have been shown to have PN beginning in studies. So fasting blood sugars should be logged and followed by YOU to show trends. Also get your number result for HbA1C...and follow that yourself.

Please read this:
http://neurotalk.psychcentral.com/post810705-1.html

If your doctor gave you an RX for the D? It is D2 and not active. You should know that it is practically useless...but of course doctors don't know that, as they don't follow the research. You will want to use D3, in a dose 1000IU per every 10 units you need to raise. Your target today should be 50, in US units. So you need 3000IU daily of D3.
D3 is over the counter.

There are supplements that may help you. And topically a product like Biofreeze (I think this one is the best) applied to the feet may stop the burning for a few hours.

Magnesium is one to begin with.
Here is my mag thread:
http://neurotalk.psychcentral.com/thread1138.html

Aim for 1/2 the RDA as in the thread, and choose a supplement that is NOT OXIDE form.

R-lipoic acid (stabilized) can be very useful for people with impaired glucose tolerance, or other causes of PN.
Depending on which antibiotic you used, and for how long, I'd have to know the name and dose for recommendations there.
If you have hidden Candida in the GI tract from antibiotics you would need aggressive probiotic replacements. I think Kefir, is the best natural one, as it has 12 organisms in it:
http://www.lifeway.net/
Typical yogurts have only 3-6 types and the kefir is far more effective therefore.

When Candida is established, its metabolism releases aldehydes into your body which are difficult to clear. Thiamine is the cofactor for this, and taking some may help. Its newer form Benfotiamine is longer acting and more efficient. Starting at least at 300mg a day, for 2-3months should show some improvement if it is going to happen. This supplement is also good for targeting diabetic neuropathies. Most of us use Doctor's Best Benfotiamine. Can be found along with R-lipoic by Doctor's Best also at iherb.com and Amazon.

If you have used Cipro or Levaquin or Avelox in the past during all this progression, there may not be a quick solution to your PN. Fixing the nerve damage that some people get with the fluoroquinolones is tricky and may be unproductive.

You may want to repeat the ANA at a later date, as normals may show up in some testing, where they later become elevated.

Antibiotics kill off bacteria. Our mitochondria in our cells, are decendents of bacteria, and hence some antibiotics damage them. Studies are ongoing now about this, specifically in the Autism community where they are finding that in some people damage can come to mitochondria in this way, causing neurological damage. I have seen even simple antibiotics like Amoxacillin implicated. But this is still in the investigative stage.

You will want to avoid vaccines, also, as they can cause damage.
That is a whole other topic by itself!

So consider modest use of some supplements, and get those B12 results, and see if you can heal up.

Exposure to dry cleaning solvents, toxins, paint strippers, arsenic, pesticides (gardening), or other toxin should be looked for and avoided. If you take Statins for cholesterol, consider discussing stopping those with your doctor, to see if that helps. Statins, prevent remyelination (repair) of nerve insulation.

Thank you kindly MrsD for your knowledgeable and extensive reply!

I do have details on much of what you addressed. Will try to respond as succinctly as possible, but will still need to have some detail...

B12 levels? A little over 500 on last test...so within range. Subsequently I took a short course of methylcobalamin shots which 'may' have helped when taking 1000 MG daily for about a week. MD didn't want to prescribe more than once per month after that, following published guidelines I suppose? Currently not taking any. NOTE: When I've atttemped pill/sub-lingual form in the past, I've always had to stop within days since I will tingle all over badly which did NOT happen with the injected methylcobolamin!

Never tested mag, but may do so very soon. Cannot overstress, when I take it, within days, widespread twitching, which really doesn't bother me other than eyelids. I've taken gabapentin for almost 4 years and have just read that it CAN deplete magnesium Have you heard this? If so, this could be an issue? Have made note of the forms suggested, thanks

I have taken benfotiamine at times, again did not not sustain the therapy. Again, I'll probably test this soon as well. Do hope the serum/whole blood test for these vitamins/minerals are generally accurate?

I tested D3 in 2010 on my own initiative. When I supplemented with D3, it seemed to make symptoms worse. Also experienced greater insomnia, which also makes all of the sensory problems heighten. I may have this tested again in my new workup. Very frustrating that I'm not able to tolerate these supplements that are beneficial for my symptoms Even though I may just have to try and push through to get them into my system? What do you suggest with the apparent lack of tolerance ? Smaller doses? I am somewhat embarrassed I've not faithfully taken the supplements as so many others here seem to adhere to

Good points about 'normal' glucose levels. I've only ever had 'fasting' levels tested, always between 82 and 97. I do have relatives with Type 2D but I show NO other symptoms. But you're right, I've read of PN being a 'presenting' symptom. A close family member with T2D for about 20 years is just finally having 'minor' PN symptoms in their feet - so my presentation is far different than theirs! Perhaps the hBA1c is warranted?

Thankfully I did NOT take any of the antibiotics you listed. I can remember taking IV Rocephin, biaxin, doxycycline. Doxy also seemed to intensify the burning tingling while ON it. Again, the burning of back skin/rear legs became chronic AFTER the antibiotics - maybe related or coincidental, I have no idea?

No recent vaccines.

I have been exposed to some questionable chemicals (plastic/acrylic gasses) sporadically in my work and even less occassionally while gardening - this is always something in the back of my mind. Problem is, exposure was 5-12 years ago, what would I do now to assess damage/dysfunction beyond what I've tested? Mentioned this to neuros, they have no suggestions. Any ideas? By the way, this would NEVER be worker's comp issue since I am self-employed. So no blaming anyone, just want to help my symptoms

How accurrate are these skin-punch biopsies in surveying SFN? Based on my strictly sensory symptoms, the doctors and myself really thought this was my diagnosis until the negative test. Would a re-test be suggested? By the way, the sample was taken from the back of my right calf (as directed by the instructions), yet this is an area that rarely burns? The lab suggested one of three test sites, have to wonder if another one of their suggested test sites would make sense? Is a sample EVER taken from the sole?

I need to give biofreeze a try, even though I might have used it back in '07-'08? I've tried several topicals including compounded meds to no avail. Yes, cool surfaces tend to calm down the tingling, so much so I keep a tile under my desk for relief on my bare feet, run the ac in my car at floor level. Shoes are excruciating JUST on my soles, so I try to go barefoot in my house as much as possible...but this presents a problem in that I don't enjoy the 'cushion' effect of shoes while having to stand still or walk.

Standing still 'after' walking is one of the most painful times for my soles. When I move, the tingling can be much less noticeable. Also soles on floor while sitting, driving etc are not happy

Never taken a statin, in fact no rx meds for many years before the neuro symptoms started.

I will add that the nerve pain gradually started after about 2 years of extreme fatigue AFTER I lost about 65 lbs in 2002, intentiontial weight loss via reduced intake/herbal diet supplements. After the weight loss, I started gaining it back, was exhausted much of the time and had a 9 month long respiratory ailment, which was severe at times, so I did not seek any help for it. All of the above between 2003-2004. By spring 2005, first somewhat regular neuropathic symptoms. Saw first MD for burning sensations in Jan 2007 despite not seeing a doctor for at least 15 years prior to that.

I again thank you MrsD for the time you give me and so many others. I do have 'ok' times for part of most days, but this has never gotten easier in the 5 + years of living with it. I work (at home) which does distract to some degree as do some interests, pets etc. Many days the ONLY thing really troublesome are my soles if I do anything that others would consider normal activities. I suppose this is a common scenario here. Sitting becomes painful too, but can be avoided if not in any position of constant pressure for too long?

Will seek some vit/min blood work and check out the biofreeze. Also interested in different rx med combos, but that's for another thread I supose.

Please take care,

JB

Sudden weight loss implies low fat diet. If you do not provide
essential fatty acids daily (good fats) the nerves cannot maintain themselves. Nerves are mostly fat in composition.
There is even a medical term for this: "slimmer's paralysis".

The nutrients specifically to repair myelin are B12, folate, B6 and
fish oil.

There is an RX version of activated B's called Metanx. If you decide to use it, take it on an empty stomach.
There are people who require the active forms because of genetic failures of conversion in the body.

When nerves wake up from being numb, they often tingle. Also when cold and then warm up, they tingle then too. So keeping a log maybe helpful for you. And using tingling as a guide is not always accurate. Keeping your feet cold like you are will result in tingling later, as the blood flow improves again. It can be a pattern of your circulation and not a symptom per se.

Blood work for serum levels of B6 and magnesium are only valuable when they show very low levels. Otherwise, the ranges are not reflective of much. Better tests involve intracellular testing, so consider those. Spectracell labs is one type.

Sometimes people with progressive problems and strange reactions to supplements may have gluten intolerance...meaning the gluten peptide has escaped into your system, and is causing various autoimmune/inflammatory problems. Here is a link to that:
http://neurotalk.psychcentral.com/thread1872.html

Fixing the gluten problem by going gluten free, has helped some people who have come here over the years with PN.
Gluten intolerance may be Celiac (genetic testing) or acquired later in life due to leaky gut, without the genetic markers.

I'd start on the Kefir ASAP. YOu might find a considerable improvement.

500 is not a sterling result on B12... as Dr. Snow, in his research found people with neurological damage at those levels:
this is a link to his paper on it:
http://neurotalk.psychcentral.com/post698522-70.html

You could take 1000mcg (1mg) daily orally, on an empty stomach and see if you can get that level up closer to 1000.
The higher the level, the more successful the B12 can travel into the spinal cord and brain. You will want methylcobalamin oral.

You can test yourself....either borrow relatives glucometers, or get one yourself. You might be very surprised at what you find.
One Touch ultra mini is free---but you have to buy the strips or get a doctor to RX them to you, for insurance. This probably would put you on "diabetic" diagnosis. This can help if you ever need diabetic support, special shoes etc. But it also labels you
for pre-existing conditions. There are so many people with insulin resistance....who don't know it. Another test is a fasting INSULIN...and if this is elevated, that points to impaired glucose tolerance as well. The beginning of diabetes is often silent, and there may even be very low blood sugars that are missed indicating too much internal insulin secretion in the beginning. Alot of lows lead to nerve damage, since the nerves are not getting enough glucose to run the energy mitochondria.

So...
Get some Kefir... at least 4 ounces a day.
Metanx RX if you prefer (has active methylB12, active B6 and methylfolate in it)
Fish oil
R-lipoic acid 100mg a day and Benfotiamine 300mg a day.

Eat magnesium rich foods, like beans, nuts (almonds), etc.
And see what happens in 3 months.
Consider going gluten free, do the research on that.
These are the main items. Some of us do more, some less.
But most people will respond to this list in some way.

Make sure you have normal kidney functions, and that your doctor
approves.

Hello MrsD

Again, impressed and appreciative of your knowledge, particularly details!

Keep in mind, I lost this large amount of weight in 2002! Yes, diet was extremely low fat and the first subtle neuro symptoms started near the end of this diet, but not troublesome until several years later, is this possible to present in this 'delayed' fashion if the diet was a causal factor? If so, I have to wonder if any deficiencies, absorption deficits etc played into this?

Excellent points in distinguishing numbness vs. tingling and you're correct! I can remember at times in life when a body part would 'go asleep' from compression. Sure enough, the first reaction would be numbess and then tingling and thankfully it would subside, unlike what we're talking about today!

Tried gluten free for 8 months in 2008, unfortunately I don't think it helped.

Have noted your comments about Spectracell, any idea what people self-pay for testing at that lab?

Interesting comments about my B12 level and the possible for nerve problems Neuros never thought it a problem, I tend lean toward your reference. One thing I also wonder, my 500ish reading may not have always been THAT high? Really need to aim for 1000 and get the D3 up as well.

Trying Kefir is easy enough, will do as well as suggested doses of Alpha Lipoic, etc. As stated, tried some of these before, but didn't continue. Hoping it's not too late to improve things?

Excellent points about the glucose testing. My relatives would be more than happy to help.

IMPORTANT: forgot to add something earlier! Back in early 2005 when I really started with the tingle/burn/zaps, I immediateley thought 'diabetes'. At the time I bought a bottle of keto-diastix? Familiar? Anyway, I NEVER reacted on the glucose portion of strip, but numerous times I would show 'ketones' in my urine. Again, back in '05. Could this be a clue to anything?

My blood testing for fasting levels of below 100 were all between 2007-2010,well after the 'ketone' readings in 2005

For what it's worth, I have the near inability to sleep for more than 2.5 hours straight IF I do not consume fairly large amounts of carbohydrates/calories? What could this indicate metabolically? I've have this tendency well BEFORE any nerve problems in 2005.

I know I've given alot of info and much of it seemingly disjointed. Besides my nerve pain/sleep issues/right ear tinnitus, actually feel OK. But there's probably NO irony in the fact that all my health problems/symptoms seems to relate to the nervous system and nothing else.

Question is 1 of 2 things? Can I find/improve the cause and/or what meds can cover the symptoms to live a better quality of life? Certainly many here grapple with the same questions? Again, I'm just dealing with sensory dysfunction for which I suppose I should be thankful

Thanks again MrsD for your unselfish sharing of info/knowledge! Perhaps if I followthrough long-term with some of what you're covering, something might help symptomically?

Kindest Regards,

JB

It takes time for people to get into the PN status, it can creep along quietly.

I had terrible foot problems from being hypothyroid, and once that was treated, it took a YEAR of tingling in my feet before they came back! They had reached the numb stage after the initial painful stages in the beginning.

You will want the new R-lipoic--the stabilized one---for best results. The old Alpha lipoic requires high doses, and 1/2 of it is actually inactive. So the new one is preferable and will give faster results. Doctor's Best brand is the best I've used. It is giving me lower A1C's whereas the others did not.

So since it takes time for you to get where you are now, it will take some time to recover. Supplements are not drugs, and not typically fast acting, unless some extreme deficiency was present.

Ketones show up when you are not eating alot of carbs. They show up as fat is burned for energy.
I do know the sticks can be corrupted and read erroneously. But I don't know the exact chemistry of them. They were used commonly for monitoring the Atkin's diet, which was very low carb.

Carbs do help one sleep. This is because they enable release serotonin in the brain. Also a heavy carb meal late will boost insulin levels which are sedating, BUT...then you crash and wake up and you dip low. You might try, slow carbs like lentils, or black beans, green peas. I found a nice Progresso Soup with lentils, and typically use 1/2 can at night with other veggies mixed in. These are very nice for night time because they don't wear off.
I also use Bush's black beans..these are easier on GI tract than red beans for me.

Also to consider is nightshade veggies. I cannot tolerate potatoes anymore...they have solanine in them, and make me burn terribly. Histamine containing food also causes paresthesias.
I have a new histamine thread here:
http://neurotalk.psychcentral.com/thread161714.html
I just ordered the Daosin-- and it came last night. I haven't tried it yet...but I gave my cat who has the histamine tumors, a 1/3 dose just now...to see how she reacts. Histamines in foods or histamine releasers can give PN type symptoms in some people. Tomatoes also are a big culprit.

Methylcobalamin is the cofactor for converting serotonin to melatonin, for sleep BTW. Low methylB12 and you won't be making melatonin much.

Low blood sugar makes it difficult to sleep... I was waking up having lows, and when I tested I found that fact.

You might ask the doctor for amitriptyline for bedtime. I don't see that you take an antidepressant? Amitriptyline showed recently in a research study that it increase nerve growth factors, and that makes it especially good for PNers.

I started it last Thursday, 10mg at bedtime, and it really helps you SLEEP... I have old shingles neuralgia in my right arm, which often wakes me up. So far I've been in a kind of coma in fact with the amitriptyline! LOL Today I am a bit more alert, but for two days there I was napping like mad.

If the Neurontin is not working...I'd taper off it. While doing a drug thread here I found several meta-studies claiming it is only effective in about 1/3 of patients. If it doesn't work, get rid of it.
It will require a taper, for safety if you have used it a long time.

I don't think you need other vitamin tests at this time. Just take
a good product like Centrum Senior, (I use the Costco version of that) for the rest of the vitamins.

For now, you may see improvements with what I've suggested. Those are the "big guns" so to speak.

I just had to jump in here and say...........

[U]YOU ARE AWESOME[ MRSD!!!!!!!!!!/U]

Not that everyone on this site isn't awesome- but you put all this information together for us - thank you, thank you, thank you, thank you, thank you - one billion, trillion, -mczillion (as my daughter says) times! You make this information accesable and easy to understand - its great and really helpful. It doesn't make one feel small or degraded as md's sometimes do when they try to communicate. You are also doing all this work for free and the only reward you get is our appreciation - you have it 10,000 billion, trillion, -mczillion times!!!!!!

X2 on Blaine's comments!

MrsD's response to my situation was as thoughtful and well-sourced, if not MORESO, than just about any doctor I've seen and paid a lot of money to in the last 5 years! I've seen some well-meaning practitioners, but was never given the level of detal as found on here! For ex: the fact that my Vit B12 results may NOT be that great after all etc!

She has (and others here too) have motivated me to get serious about taking these supplements and to take better care of my overall health. I've been a little complacent recently thinking that I'm in pain, what's the use, but I think there IS a better way and intend to follow that path!

I had some diagnostics drawn today that may or may not shed light on the cause of the sensory problems, but I have hope for at least some degree of improvement over time IF I follow this regimen.

I am also interested in better methods of covering the neuro pain, so will be studying the appropriate meds thread for that!

But again, the world is a much better place with people as unselfish as MrsD Hope to repay the favor sometime...

Thanks to everyone here

JB

Hi better12,

Your story is remarkably similar to mine and I've had similar questions.

I'm currently looking into mitochondrial issues and supplements. Hypothyroidism can lead to PN. Endocrine problems in general, too.

Low temps are a v. common symptom of hypoT. Do you get cold hands/feet? Is your core temp lower than 98.6F?

I've read that mitochondrial dysfunction can mimic hypoT. I was going to try the hypoT supplements but first I'd like to try mitochondrial because that's probably the root problem.

I'm already taking B12, but I'm looking at trying Acetyl L-Carnitine (rec'd on this board) and D-Ribose.

Your Mg idea is good. But absorption rates can be low, so topical is another option. If you haven't already, check out Dr. Carolyn Dean's book on Mg.

I've been taking Mg for months to deal with PN. I don't know if it's helped, but it's so important for other health issues, I don't plan to stop. It also has the power with long-term use to detoxify heavy metals in the brain.

My PN has got worse this year and seems to get a little worse whenever I lose weight. I've lost 30 lbs this year already, mostly by accident. PN gives me insomnia... I end up sleeping when I used to be eating... I miss meals and lose weight.

Keep in mind, too, that toxins in fat can get released into the bloodstream by weight loss. If you were once working in a toxic place that could become a factor. Toxins can get stored for years.

mrsD, could we please have a sticky thread on Testing? All the different kinds of PN-related tests, including comments on reliablility/interpretation, as you were noting in this thread?