Thank you for your reply, Mrs.D!

Oddly enough, at the time this burning started 2 years ago, I hadn't been on any antibiotics in over 3 years. Prior to that I had been on IV Rocephin, not of the fluro. family. I have only been on the cephlasporins, penicillans and cyclenes. I also take antimalarials. As i mentioned in my intial post, I had been experiencing some VERY intermittent tingling over the years but never, ever pain, until I that dreadful day in April 2009. My infectious disease doc argues that PN is quickly becoming one of the biggest symptoms in lyme disease, therefore, I have been treating very aggressively again but w/out any improvement of the PN in two years. Every time I break through the neurontin the pain is so out of this world, I can't believe it's still there and as bad(and as advanced). What now?!

Katie

Okay, I will list the nutrients that some of your antibiotics may have disrupted.

Amoxicillin --- depletes

The B complex... B1, B2, B3, B6, B12

inositol
biotin
Vit K
Potassium

And kills the beneficial organisms in the bowel,
Bifido bacteria, and Lactobacillus

Doxycycline

Depletes the same as above,
and also:
Iron
Magnesium

Cephalosporins:

Same as Amoxicillin

It takes time for this all to happen, so you would not see effects at first, but eventually depending on your dietary habits, some things may become too low.

You need to get blood work for both B12 and Vit D3. These can be low ANYWAY in people with PN symptoms. Get your numbers and don't accept "normal", from your doctor, since interpretation is very poor with both of them. Our lab ranges in US do not flag really low levels, but call them normal.

I am unsure that the organism causing Lyme would be affected by any supplements you could take. We would have to know how it targets the nerves exactly.
Nerve damage comes from damage to the insulation around the axons, and also from damage to the cell body, nucleus and mitochondria.
Myelin damage may be helped with B12 (methylcobalamin is best) B6, and folate. There is an RX vitamin called Metanx that is made to target this problem. There are questions that the generic is identical in composition to the brand name, so brand is best. You can buy these ingredients separately OTC.
B6 is called P5P (NOW company makes a good one) and the folate is called methylfolate-- and made by Solgar (Metafolin).

Add to those some Omega-3 fatty acids like Fish oil, at least 3 a day, and you may encourage remyelination.
Magnesium is low in many people (who do not have PN) so taking a good magnesium supplement is advised too.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Vitamin D:
http://neurotalk.psychcentral.com/thread92116.html

Vitamin B12:
http://neurotalk.psychcentral.com/thread85103.html

Supplements for cell body damage, mito damage include:

Alpha lipoic acid ( r-lipoic is newer and I suggest it instead)

Acetyl Carnitine ( helps with chemo damage and AIDs drugs damage, so I suggest it for other drug damage too)

Biotin (works with the carnitine)
CoQ-10 (works with the carnitine + lipoic)

Benfotiamine (this is a fat soluble B1-- that is useful for people with errors in metabolism involving aldehyde and alcohols and which may be genetic too) This is also being used in diabetic
neuropathies now too. If you took metronidazole antibiotic, Benfotiamine would be a choice for you.

Low Vit D is causing many problems for chronic pain and immune issues. So fixing it and getting it up helps many people in many ways.

Hi Mrs. D...

Thank you for the lengthy reply and your time! I wrote a very detailed resonse several days ago but it's not here? Not sure what I did wrong so I will try to retype as best I can...

I am currently on:

b12 methyl. inj sub Q 1x a week
r lipoic
b1
b6
ala
coq10
fish oil
lcarnatine
probiotics
vd3 50,000 a week
glutathione
folate

I started this complete protocol a little over 2 weeks ago. i'm not certain your recommendation for the amount of B12 injections? How many do you suggest weekly?

I have met with 2 top nuero's in NYC and both stated the lyme disease is rapidly becoming more recognized as a reason for SFN. I can't remember exactly how the nerves are affected but I know the disease attacks every system in the body..cells, nerves, tissues, organs, etc. Naturally the question in the back of my mind is, if there is an underlying disease, will supplements help? My infectious disease doc feels the only way to get at the SFN is to aggressively treat the lyme but I'm not so certain. I've had lyme for at LEAST 12 years that Ive known of and in hindsight probably should have been more consistent in treatment(been on and off IV drugs 5 different times but not consistently- who knew!?). I have been extremely aggressive the past 2 years- since this pain in my feet started-and Ive seen ZERO improvement. In fact, it's begun to advance up my calves a bit. I just increased Neurontin to 3900 mgs and it's not cutting it.

This has been quite the battle and I'm truly not sure if I'm targeting the RIGHT thing here...

Any suggestion/advice would be greatly appreciated!! I thank you so much in advance for the time it may take to reply..

BTW, is it appropriate for me to reply here or should I PM you??

Kate

I think, Kate, that you would get better and faster improvement with oral B12.... 5mg orally each morning on an empty stomach (no food for 1 hr).

There are recent studies showing oral works, as long as it is used correctly. It works for me! Others here have posted success too.

Injections only stay in the serum for 72 hrs. Oral provides B12 daily and is similar to eating it in food. Our bodies are tuned to that oral route. You will want to get methylcobalamin form, for best results. This is not expensive, and you can find it at iherb.com or Puritan's Pride. (I tested out the Puritan's form recently and my blood work showed it worked wonderfully).

I would add magnesium to your list. Either SlowMag or a good chelate (like glycinate). Magnesium is critical for getting fats metabolized properly, including your fish oil.

Thank you! I have Methyl B12 1000 (Jarrow) that I take once a day. In order to reach the amount suggested here, do you agree taking 5 of these is sufficient or should I look for something different? Are you on pain meds as well?

Katie

Ok, did the conversion..guess I'd need a whole lot if I did it this way !

So, Im searching for a 5 mg version...do you have a suggestion for purchase and do you recommend capsule or lozenge?

Thanks!

The only pain meds I use are :
Tylenol
Aleve... I rotate these to reduce side effects...
And
tramadol for very bad nights.

I do use topical things, like Biofreeze more often. Salonpas patches, and sometimes Lidoderms.

If you are very low in B12... 5mg daily would be best for about 3 months, then have another test taken, and if you are high like I am you can reduce. If you are not really low in B12 but just want more, the 1mg should be enough. Be sure to take on an empty stomach, as food messes up the absorption orally.

In people with no intrinsic factor, the oral which is about 500 times stronger than food, will be passively absorbed in 1-10% amounts. The RDA for B12 is 2-4 micrograms, when intrinsic factor is working properly.

Puritan's just offered methyl B12, so I bought some and took for 3 months before my last test. I typically hover around 800 normally. With 5mg daily I tested out at 1999 (which I believe is the max the test can do).

Hi Mrs D.,

I just went through my records and found that my B12 is 550(prior to taking any B vitamins), and B1 plasma is 15. With levels like this, is it likely Vitamin B is not the culprit here? And if B is not the culprit, can it still help in healing?

Katie

On my B12 thread, I have a copy and link to Dr. Snow's article.

This research article has changed the way doctors should view B12 issues in people.

http://neurotalk.psychcentral.com/post698522-70.html

He states in that article that some few people will test out at 400 or close to and still have neuro issues. He recommends taking the B12 anyway for those patients.

You know there is a transporter to the CNS that moves B12 from the serum to the brain and spinal cord. That could not be working properly. Also people tend to store B12 in the liver, so if that is overactive it would pull B12 out of the serum making it unavailable to other sites. So there may be factors what exist in some people that just require higher levels.

Dr. Snow states that B12 is so inexpensive and benign it is not sensible to withhold it when neurological symptoms are present.

I really don't think the sublingual is very efficient. You end up swallowing the dissolved B12 in your saliva. The B12 molecule is huge and not easily passed thru membranes.

So most are sublingual...I just chew them and swallow them.

But one to avoid is "extended release".

There is a new one coming which I expect to be more expensive.
If you find this please let us know about it:
http://findarticles.com/p/articles/m.../ai_n30959773/

I expected it here by now...

When my B12 was tested it was about 4 months after the neuropathy had started to turn to pain. In order to stop the neuropathy, i went on ridiculous amounts of antibiotics and remian on them today(oral VS IV now however). They may have prevented the neuropathy from healing if they soaked up the B12 I had. I am going to request another look and will stay on them as Dr. Snow mentions. I have other neuro problems as well so at this point, why not?!

I recently had heavy metals testing done(not sure how reliable the testing is) and I came back high for mercury, lead and gadolidium. The integrative doc I see naturally feels I should chelate (orally not with IV) and of course get all my mercury fillings out !! I have read that mercury can cause neuropathy so of course it peaks my interest but I was wondering if you've got an opinion on metals and/or if you have any valid articles to point my to?

Lastly, I'm preplexed over the neurontin. I understand I should never stop with out counsel from my doc but i doubt he would ever advise it since it's all he's got to offer(plus IVIG). I have such pain in my feet w/out it, I don't know how I could survive. When it's doing it's job, I feel nothing! Bear in mind I am still fighting a ton of other issues from the lyme so the relief is MORE then welcome. However- I HATE HATE HATE being on pain meds like this and know that my body prob can't tolerate going up much higher then I already am-3600. How do people like yourself survive the pain? Or, has your pain loevel decreased to where it's "tolerable?" I know you listed your meds but none of them are real big guns, w/ the exception of the ocassional Tramadol. In additon to the Neurontin Im on 150 of Trileptal and .05 of Ativan for sleep at night. If I were to come off and truly gage the pain(as of right now when I break thru the meds the pain is round the clock with no trigger-it just "is") are these meds the type one could get back on with the same efficacy?

Sorry for the long reply!

Kate