I think it's private but you can ask to join.

It's not like your going to have to run the gauntlet or give up your first born to get in.

I find this thread, but it's from '09.
New medical information on Vitamin D + videos:

Doc

Thank you Dr. Smith.. That is the one!

Post #70 has a link on why d3 is more useful.

One thing to remember is that while on
VitD supplements , some doctors suggest
to limit calcium supplements to no more
Than 600mg a day. This is because D will
Improve absorption from food.

FWIW, our docs here do not rx D2 anymore, given that D3 is over the counter and (and I quote) "as good, if not better" than D2. Typically, you buy a very cheap product at our pharmacies that has 4 oily capsules with 25,000IU of D3, and you typically take one a week. If you are very low, you can safely take 2 (i.e. 50,000IU) the first week. (I did this a few years ago, with obviously no ill effects).

My doc now routinely advises many of her patients to get this product during winter, as a vast percentage has a deficiency or is borderline. Also, this D3 product (D-Cure) is so common and ingrained that there's just no reason to go the D2 route.

Personally, I prefer to take a daily dose of 4,000IU (D3 ). It comes down to the same dose, and I have no proof, but I suspect that works better than a large dose every week (how much of that would be absorbed?)

I have however stopped taking it back in May to see if I could get my levels up by being outside most of the day. Will be interesting to have it tested/see the results in Sept.

On a more general note (and this is not a dig): please read this forum carefully. There is so much info on D3, B12, magnesium, B1 etc. that it's almost impossible to miss. All these can be bought cheaply and taken safely. They may not cure PN (in this case) - although they sometimes do (!) - but they are so fundamental that healing is almost impossible if you don't have these levels in a safe and comfortable range.

Page 4 of the Medscape article I referenced lists pretty much the same things -- maybe a few more in different ways, and explains why D2 was prescribed since the 1920s (as is often the case, it was a form patented by Big P). Something I didn't know was that D2 is made from radiating ergot.

Oddly, for some reason, clicking on the link from here sends one to a log-in page, whereas clicking on the exact same link from google sends one directly to the pertinent page. (I've checked, and the URLs are identical)
I tried it again, and this link sends one directly to the pertinent page.
Vitamin D: A Rapid Review: Vitamin D2 and/or Vitamin D3 - Medscape

Doc

I read through the first 6 pages of this thread & finally had to stop to ask this question...

Am I basically doomed to PN by the combination of chemotherapy (Taxotere & Taxol), antibiotics (Cipro & Flagyl at various times), along with NSAIDs?

As part of my treatment regime for breast cancer, I was given Cipro at least twice (for almost a month following surgery) while also taking various NSAIDs to combat inflammation, swelling, and associated pain. One of the times I know I was on Cipro & NSAIDs was fairly soon after my chemo-induced PN began & caused my chemo regime to end earlier than planned. Since that surgery, I've had all sorts of nerve problems including TOS. Is it possible (probable) that my continued nerve problems is due to the mixing of these drugs? Would nerves already damaged by chemo be more susceptible to damage from these other drugs?

Cancer really did ruin my life. :-(

My last 4 years:
7/7/09 Diagnosed with Stage 2B BRCA1 breast cancer in axillary tail of left breast while 20 weeks pregnant by excisional biopsy (lumpectomy) without anesthesia
7/31/09 port placed, started FAC chemo (with steroids)/1st FMLA leave granted
11/27/09 delivered healthy baby girl (8#4oz) (antibiotics & anti-inflammatory/opiate given given)
1/2/10 began Taxotere chemotherapy with steroids
1/16/10 switch from Taxotere to Taxol (with steroids) because of PN & slight allergic rx
1/30/10 all chemo halted because of worsening PN & allergic rx
2/19/10 bilateral radical mastectomy, skin & nipple sparing with expander implant reconstruction, port removed (antibiotics & anti-inflammatory/opiate given given)
41/10 returned to work with FMLA approval for flare-ups (continued until dismissal)
7/2/10 oophorectomy & implant exchange surgery cancelled due to low neutrophils
8/28/10 tubes & ovaries removed, implant exchanged cancelled due to excessive internal bleeding requiring 2 transfusions (antibiotics & anti-inflammatory/opiate given given)
10/2/10 emergency hysterectomy due to abscess on uterus from previous surgery (antibiotics & anti-inflammatory/opiate given given)
2/17/11 implant exchange surgery (antibiotics & anti-inflammatory/opiate given given)
4/?/11 began seeing a pain management dr (what a crock)
10/29/11 autologous TRAM flap reconstruction/implants removed (antibiotics & anti-inflammatory/opiate given given)
11/15/11 began physical therapy
12/20/11 totaled vehicle due to pain/loss of grip from TOS
12/?/11 EMG & vascular studies show brachial plexopathy -- PT continued
5/14/12 1st rib resection for TOS (antibiotics & anti-inflamatory/opiate given)
6/2/12 left lung partially collapsed due to infection (antibiotics, & anti-inflamatory/opiate given)
8/?/12 sent by employer for 2nd opinion = same diagnosis
12/31/12 PT discontinued due to insurance & nothing further to be taught & increasing harassment at work
1/11/13 dismissed after almost 9 years of commended work due to absences & falsely accused work difficulties/inadequacies
4/15/13 SSDI application filed with lawyer
8/10/13 General Medical Exam ordered by SSDI

[QUOTE=Biologybrain;1006796]I read through the first 6 pages of this thread & finally had to stop to ask this question...

Am I basically doomed to PN by the combination of chemotherapy (Taxotere & Taxol), antibiotics (Cipro & Flagyl at various times), along with NSAIDs?

As part of my treatment regime for breast cancer, I was given Cipro at least twice (for almost a month following surgery) while also taking various NSAIDs to combat inflammation, swelling, and associated pain. One of the times I know I was on Cipro & NSAIDs was fairly soon after my chemo-induced PN began & caused my chemo regime to end earlier than planned. Since that surgery, I've had all sorts of nerve problems including TOS. Is it possible (probable) that my continued nerve problems is due to the mixing of these drugs? Would nerves already damaged by chemo be more susceptible to damage from these other drugs?

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Okay, first off, let's get some things into perspective. Don't panic!

For many -and I do mean many! PN is NOT permanent. I have been challenged on this subject many times and even on this site, there seems to be little hope of actually curing from it, though their certainly is a lot of hope in improving. And they are right about that part for sure.

But here is the facts, there are many who do, indeed, heal from pn. This is a slow process and it sometimes takes years. This has much to do with how resistant your body is to the antagonist drugs. As well as your genetic predisposition.

Case in point: A man I met at the neurologist office (admin edit) Who got severe pn from a mix of flagly, then later Cipro. It took him 3 years to return to normal, citing that he now only gets very minor pn pain during major storms or extreme stress in his life. Essentially, he is healed from it.

More fortunately a young man, I know of, had Neuropathy from taking Cipro (and took it several more times afterward -bad idea!!!) and he did in fact heal from it after stopping the drug. This too, took some time, but far less than I imagined (only about 7 months). Why this is, is unsure, but it's probably due to his own body's ability to to resist toxicity. There are thousands, if not millions, who take the same drug concoctions we took, yet they are fine - more evidence that there is probably a genetic factor involved in whom is more resilient to toxicity.

This made me realize that you do NOT even need to be completely cured for PN anyway, just enough to get your pain and symptoms reduced that it does not interfere with your Quality of life. Even severe pn sufferers can achieve this.

Everybody's body is different, some have a higher tolerance for such drugs, while others do not.

Yes, you most "probably" got PN from those mix of drugs. And, yes, they knew it was a possibility you could get these side effects from taking them.

But the question is; what to do now?

First thing is first - you NEED to get a doctor that can help you manage and treat Neuropathy, or one that will send you to a specialist that can do so. This is not an easy task. I have been dealing with bad Neuropathy for over a year, and I just found a doctor that can understand my needs.

The crucial elements between doctor and PN patients is "communication" - it means the world to have a doctor that can REALLY help you out.

You and I have something in common, we both got PN from a mixed dose of drugs - in my case, Cipro, NSAIDS, and Benzos. Separately, these drugs can be harmful to some, let alone taken together.

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Okay, now what to Do?

Get your head straight - realize that your case is unique to you - your body is not the same as everyone else, so no one can say if you will heal completely or be Doomed. Most assuredly, if not healed completely in time, you WILL get much better. ...And yes, you can get your life back. Just hang in there.

You need to take a certain amount of control of your own life, doing research on pn and what vitamins, hormones/supplements to take in order to start a strong healing regiment. In other words, don't rely on your doctors, most are very ignorant of what pn is and how to treat it.

There are however, specialist places for pn, such as the one in Chicago and other Neurological Medical establishments. However, like me - some get denied after assessment. Still not sure why?

But if you can get a chance to see a specialist in the field of PN you should go see them.

Here's a personal example: I went through loads of blood tests, but only recently, have I gotten the news that my vitamin D levels are extremely low from a low of 9 - to a high of 15. Something I did not know about or was even aware of until about 3 weeks ago. This alone might be a great discovery in helping me fight off pn.

So you see, you have to be "proactive" in finding out what works for you -what makes you feel better, and what to take in order for you to live a less painful and stressful life.

You can get great advice from this wonderful forum, which updates its site with new discoveries very often.

Let's recap here:

#1: Know that you are NOT doomed! This is not a pep-talk it's reality! Even if you do not heal completely, in time, you WILL heal enough to get your life back.

#2:Try to find a doctor to whom you can communicate well with and who can help you "Manage" your pn issues.

#3: Be proactive - learn all you can about your condition and how to possibly heal from it. Be wary of "quick-healing-scams" and what you put in your body. But don't over analyze too much, or it will drive you crazy. Use common sense and patience about such things.

#4: Stick to a strong regiment of supplements and lifestyle. Carefully select what supplements help you and which do not, and try not to indulge in things that might make your brand of pn flare-up.

#5: Please keep a daily journal of your progress. I have a very detailed journal of my pn troubles pains and healing strides, and there is no doubt I have gotten better. In times of depressing flare-ups, it is important to have this as a clear gauge that you will get better.

My advice about using this site. This is a smorgasbord of information that is very, very helpful in healing and understanding pn and its victims. However, do not engage in tedious debates, as in all forums, there are always some who like to debate, more than contribute. In other words, don't be overwhelmed by some negative things you may read here.

Take what is useful to you and ignore any Doom-Sayers - your mental health is just as important as your physical health. Something to keep in mind.

God Bless you, and I pray for a steady and bright recovery.

Here is a list of links you may find helpful:

http://peripheralneuropathycenter.uc...ic/drugs.shtml


http://www.hindawi.com/crim/endocrinology/2012/165056/

http://nervepainhelp.com/products/

http://jac.oxfordjournals.org/content/37/4/831.long


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Good post Jesse!

Looks like the FDA finally is posting a warning about this!

FDA warning label change for Quins

After making some radical changes to my diet and lifestyle, I've seen major improvements in nerve pain. I had to cut out all grains, (wheat, rice, oats, etc), dairy, soy, sugar, coffee, alcohol, processed foods or beverages, and nuts (these can be inflammatory). I only eat organic or grass fed foods and drink distilled or purified water. Plus, I exercise lightly for now - walking, yoga, or light biking. And on top of all that, I take high doses of magnesium (including Epsom salt baths), vitamin D, B12, CQ10, and quite a few other supplements. Sleep and managing stress are important too.

Although extreme and these changes have not been NOT easy, the idea is to reduce inflammation in the body which reduces pain and allows for healing. Since I didn't know what specifically caused inflammation for me, I cut out everything that possibly could and will slowly add foods back down the road. So far, this regimen has worked for me and if I follow it ever day, the pain is very well managed. If I vary from this regime, then the pain comes back. For example, I ate a few servings of rice and nuts two weeks ago, and suffered for five days because of it.

One online book I would highly recommend is "The Levaquin Tendonitis Solution". It provides a lot of good information about supplements and the healing process after Quinolone toxicity.