Looking for an advice.

pinkynose · 04-28-2017, 04:25 PM

Hi Notsohappy. I found your drug on this list

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection

Quote:

Originally Posted by Notsohappy

Hi Janie and Pinkynose,

Thank you for replies.

The list of tests is quite long:

MRI brain and then MRI brain + spinal cord, NCS (twice), VEP, SSEP, blood tests like : immunofixation electrophoresis, paraneoplastic autoantibodies, many of other conventional blood tests (like ANA etc.).
The only test which showed abnormality is the one named QST. This showed that I have a diminished sense of vibration and cold touch in my limbs. But it is quite a subjective test and not so widely accepted, I think. And actually it only confirms what I feel for one year already: sensory problems in my feet and hands. The cause is still a mistery.
Of the numerous blood tests there were only several slightly deviated from the normal values:
1) Vitamin D is 23 (which is lower than the norm but not that much).
2) Vitamin B6 - elevated 2 times more than the highest normal value. This one is weird since I never took any B6 supplements. I tried to search for the information on the internet but it is really confusing. The neurologist did not get interested in this result at all. Recently I repeated the test again and the value is roughly the same - 2 times more than the highest normal value.
3) Homocysteine. The result of the first test done 8 months ago was 15.27 (which is slightly more than the normal values). I did the test again one week ago and it was already at 17.3. Homocysteine is one of the markers for vitamin B12 deficiency. My B12 serum result was at 430 about 8 months ago. I did B12 test again recently and awaiting for the results at the moment.
4) My hematocrit level is showing 39 (with 40 being a normal value already).

That is it about the blood test's abnormalities.

Pinkynose , answering your question about antibiotics - you guessed it: I did take the Levofloxacine drug for the infection in February 2016. As I remember there were 10 tablets of which I only took 7. My neurological symptoms started two and a half months after this. So I have no idea if these can be related.

Again , thank you for your replies and wish you all being healthy. Any additional advice will be highly appreciated.

Notsohappy · 04-29-2017, 10:35 AM

Hi pinkynose.

I am aware of the fact that you mentioned. Unfortunately , there are not any tests that can prove that what happens to me is induced by fluoroquinolone drugs. So it is just one of the many options for me. Moreover, there are not any accepted treatments existing for this condition.
A little bit off topic: it really amazed me that the medicine prescribed by the doctors every day can be so dangerous for one's health. When I checked my medical history recently I found out that I was prescribed fluoroquinolone antibiotics 2 times throughout year 2015 and one more time in February 2016. Every time for quite the regular infections, nothing really dangerous for the health. People should be informed better about the big risks involved with this antibiotic's group.

mrsD · 04-29-2017, 12:10 PM

Big Pharma is very powerful in the US.

Bitter Pills: Inside the Hazardous World of Legal Drugs: Stephen Fried: 978553378528: Amazon.com: Books
I bought this book when it came out, as I was very interested in the topic and watched this 3rd tier drug leap into first tier just because sales reps encouraged its use.

Back in the late 1990's it was mostly used for prostate and urinary infections. But this family of drugs got approved for community acquired pneumonias and that became the golden goose.

The author's wife developed a seizure disorder from Floxin. And even Oprah's show had a piece on these drugs when one of her
producers had serious brain effects from them.

The brain effects were known right from the get go...as there were warnings in the initial drug insert information to not give high doses to elderly patients. The PN effects became more visible as time passed.

The only people I think who were oblivious were the doctors.
They were heavily gifted by sales reps to prescribe lots of fluoroquinolones, and they used their gifts mightily. Even today as you experienced there are doctors out there still prescribing these drugs willy nilly. The recommendation is that they should be last resort treatments.

But the word is getting out slowly. Last summer my hubby had a cellulitis from a spider bite, and they did not give him a fluoroquinolone in the ER.

The late Dr. Jay Cohen MD suggested online on his website that magnesium supplements may help. You can Google him and see if his site is still available today.

Notsohappy · 05-02-2017, 01:05 AM

In most cases with fluoroquinolones people tell about almost immediate reactions and the symptoms are usually much more diverse than mine. My problems started more than 2 months after I was treated with Levofloxacine. Still, I don't rule out that possibility for myself.

mrsD · 05-02-2017, 10:48 AM

Quote:

Originally Posted by Notsohappy

In most cases with fluoroquinolones people tell about almost immediate reactions and the symptoms are usually much more diverse than mine. My problems started more than 2 months after I was treated with Levofloxacine. Still, I don't rule out that possibility for myself.

The fluoroquinolones also cause tendon ruptures, and this risk goes on for months and months after use has stopped. You are not out of the woods yet in that regard. Understanding of the effect remains unexplained.

Also people vary in their reactions to these drugs. Some never have a problem and others are severely impacted.

Notsohappy · 05-06-2017, 11:42 PM

I paid attention that my problems have a "flare up" pattern. Unfortunately, every flare up seems to be worse than the one before it. Can this kind of pattern hint somehow on the etiology of the problem? What causes the "disease" 's symptoms to come and then subside for every 7-10 days?

I read about it somewhere:

"*a FLARE can be related to natural (but poorly understood) fluctuations in the immunological processes that drive inflammation."

So can my problem be related to the immunological processes in the body?

P.S. I know that what I write and ask is very simplicistic or even stupid but as I told before my medical knowledge is at the lowest level possible.

kiwi33 · 05-07-2017, 03:04 AM

Notsohappy, I do not think that you are stupid.

Often inflammatory responses have an immune system involvement. The immune system is very complicated; many different kinds of cells, many different proteins, all interacting with each other in poorly-understood complex ways which can be affected by things like prescription drugs.

A specific example of this is a sadly now-deceased friend of mine who lived with Crohn's Disease for many years. Crohn's Disease is a primarily inflammatory condition with some immune system involvement.

She quite often had flares which neither she nor her very good health care team could explain.

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