Please help, I can't get into the Neurologist until October and am doing so poorly, I may go to the ER.

Here is the jist of my entire illness from start to finish.

I started with a sinus infection back at the end of April, turned into left chest pain in May, add in vibrations in upper chest near neck in mid May, add in mental fogginess in June, and finally add in numb/hot cheeks (but not red) for the last few weeks.

I have been on antibiotic, inflammation steroid, Claritin, hypertension medicine, and adjusted to help solve the left chest pain, which the last diagnosis was displaced rib. I had blood work for auto immune disorders back in June, negative. I had a chest x-ray back in June, normal.

The fogginess started after a migraine in June and has been daily ever since. The numbness/hot cheeks started at the end of June and has gone from once in awhile to nonstop, everyday. The numb/hot cheeks is my major concern right now. The doctor referred me to a neurologist, but the earliest I can get in is Oct. I'm worried I may have some kind of nerve problem and this feeling could become permanent.

The burning in the cheeks is a 10 on the pain scale / intensity scale. The numbness in the cheeks comes and goes, but the left cheek seems to persist even in down times. The burning in the neck, upper chest, and forehead comes on when the cheeks get bad. Tylenol does nothing. Wet wash clothes do nothing. The chest vibration happens every time I cough and is near the left clavicle. I had a migraine again all day today (probably less than 10 lifetime and 2 since getting sick, both were also the longest ever too -this one today was 8am-11pm, the other was 6ish hours).

I could use any and all suggestions or possible diagnosis of this. It's been a miserable few months with the chest pain, but now I have all of the early symptoms and this awful, nonstop burning and numbness. It's crippling me and making day to day living impossible.

The antibiotic? Was it Cipro or Levaquin or Avelox?

These are fluoroquinolones and can cause nerve damage.
These drugs are quite neurotoxic.

There is a new article just published showing cellular damage from these antibiotics:
http://www.sciencedaily.com/releases...0703160623.htm

NAC is mentioned in that article to help stimulate glutathione production. (n-acetyl cysteine). This is an inexpensive product, and NOW company makes an affordable one.

If you are low in B12 or borderline low then that could contribute too. Taking 1-5mg of activated methylcobalamin may help.
You ideally should get tested first, to see if you are below the new low standard of 400pg/ml. You need the get those numbers because labs still report very low levels as "normal" and they are not. When you get this testing also get tested for Vit D. This tends to be very low, also, in about 70% of adults, and may cause alot of facial and body paresthesias. Best supplement is D3, OTC, 1000 IU daily for every 10 pts you need to raise. The RX D2 does not work in humans.

Here is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

Dr. Jay Cohen MD has some suggestions on his website to also use magnesium. You can either use the new lotion by Morton's called Epsom lotion, available at WalMart and Amazon. Or get a quality supplement that is NOT oxide form, and use 200mg a day to start. Magnesium helps with damaged mitochondrial membranes and functions.

If you did not take the fluoroquinolones, this time, keep this in mind as they should only be reserved for life threatening situations. They are neurotoxic in some people. Use of steroids and/or NSAIDs with them, will enhance any toxicity as well.

If you are using an ACE inhibitor, like lisinopril, vasotec, Altace, etc, I would get that changed to another blood pressure pill. I had a horrible reaction (acquired angioedema) from this, after 10 yrs of use!
They raise bradykinin in the body and sometimes the enzyme to degrade it fails, and the vasodilation, gets out of control.
This family of drugs can also cause a drug induced lupus, which will NOT show up on ANA testing.

The antibiotic was Levaquin.....I delayed taking it for about 3 weeks and then finally gave into it. It made my ankles hurt some, but these symptoms started well after I took that. That worries me that you listed that one now. The stupid black box drug. I took it from June 1 - June 8 give or take.

On 6/12-6/17 I took the steroid Medrol as well.

Then this is most likely your culprit.

Read the links I gave you carefully. Most doctors don't understand this toxicity and may not be very helpful for you.

Magnesium may help and NAC may help. The NAC would be 600mg a day to start and you may increase to 3 x a day if needed slowly. Take the NAC with food.

However, there are sites on the net, that state that this damage may be permanent. We have one fellow on PN whose doctor in Chicago says, may reverse in two years, but I have not seen data on the net to confirm that.

Dr. Cohen had a communication from a patient, who used IV glutathione with some success. Glutathione is not active orally unless in a special form called liposomal. The NAC is the precursor for glutathione production in our bodies.

I would avoid all fluoroquinolones from now on!

Honestly this is rather disturbing news if correct. I don't like taking medicine ever and fought him so long on this one. Are there tests to confirm this? Will blood work show it? If this is in fact permanent, I'm largely screwed and ruined my life greatly.

Is it possible for these symptoms to take a month to pop up? Sighs

What are my options from here? Can you offer some advice?

I'm a little overwhelmed now with the thought of permanent damage, as the majority of the burning has come on in the last 8 days and is getting worse now.

Who should I go see for this (normal doctor, neurologist, ENT, etc.)?


What should I be asking them to do or how do I get them to test for this or look into this?


Can the symptoms really take over a month to start?


Can these treatments lead to further issues?

There are no tests for this yet. Doctors tend to not admit this damage, as they are afraid of being blamed and sued.

And there is another nasty thing that may happen after these drugs as well. The DNA damage they do to cells can affect tendons and in some people tendons may be weakened and rupture. This typically happens months after the last dose, as it takes time to manifest. The knee tendons and achilles are the prime target. But we have had two men on NT who ruptured their bicep tendons months after fluoroquinolones.

These drugs damage DNA and affect the mitochondria in cells. The nerve cells are very sensitive and are damaged quickly.

Come to our PN forum and search "fluoroquinolones" for more
posts. We have several now and some in the past who had this.
JesseM is posting about it now in fact. His doctor in Chicago diagnosed him (and that is pretty rare).

Jesse's doctors did not recommend anything for him other than symptom relief. Most doctors have not investigated this problem at all. Dr. Jay Cohen MD has a website discussing it:
http://www.medicationsense.com/fluoroquinolone.html

You might find that supplements supporting mitochondrial functions may help you heal.
These are:
CoQ-10
acetyl carnitine
magnesium
NAC

This is more common than most people realize. These drugs were initially designed to be 3rd or 4th line options when others fail.
But Big Pharma pushed them aggressively on doctors who now prescribe them 1st line. The tendon ruptures were discovered in DOCTORS themselves first who used the Cipro samples heavily.
They started rupturing tendons, so that link to the toxicity was revealed in them first. One would think there is a lesson in that, but I guess not?

Thanks for the help. This is not the news I was hoping for. I tell the doctor no, he insists and now all this.