I'd be curious to know if any of you have taken any antibiotics prior to this downward pattern. It could have been 6 months before you worsened. I've been looking very closely and researching an antibiotic that I know could potentially be terrible for someone with MC. A few things mentioned seem to warrant the question I asked. Especially the pain. If you did, what was the name of it. Jan, I think you know what antibiotics I am talking about. The more I have read and talked to med. people, the more I feel we need to know for MC.

Here's a list of the quinolone class of antibiotics which can cause tendon ruptures and other problems even for a normal person. For us it could be much worse because of the extreme tension on connective tissue from the myotonia. The most commonly prescribed are Levaquin and Cipro.

Jan


1st generation

* cinoxacin (Cinoxacin®)
* flumequine (Flubactin®) (Veterinary use)
* nalidixic acid (NegGam®, Wintomylon®)
* oxolinic acid
* piromidic acid
* pipemidic acid (Dolcol®)

2nd generation

* ciprofloxacin (Ciprobay®, Cipro®, Ciproxin®)
* enoxacin (Enroxil®, Penetrex®)
* fleroxacin (Megalone®) (withdrawn)
* lomefloxacin (Maxaquin®)
* nadifloxacin
* norfloxacin (Lexinor®, Noroxin®, Quinabic®, Janacin®)
* ofloxacin (Floxin®, Oxaldin®, Tarivid®)
* pefloxacin
* rufloxacin(Uroflox®)

[edit] 3rd generation

* balofloxacin
* grepafloxacin (Raxar®) (withdrawn)
* levofloxacin (Cravit®, Levaquin®)
* pazufloxacin Mesilate
* sparfloxacin (Zagam®)
* temafloxacin (Omniflox®) (withdrawn)
* tosufloxacin

4th generation

* clinafloxacin
* gemifloxacin (Factive®)
* moxifloxacin (Avelox®)
* gatifloxacin (Tequin® (withdrawn), Zymar®)
* sitafloxacin
* trovafloxacin (Trovan®) (withdrawn)

In development

* ecinofloxacin
* prulifloxacin

Thanks - this is a very comprehensive list, and looks to be very useful. I appreciate this info!
Also, Jan, any insurance company that would try to delay rehab for a TBI should be reported to the state's Insurance Commissioner. All literature and standards of practice indicate that rehab needs to start as soon as a patient is medically stable enough to be out of Intensive Care - even if the therapy is being done TO the body and mind, and not with much active participation, and even while the brain is still swollen and in shock, the input and exercise sinks in, and once the swelling subsides, the injury heals and the mind starts to clear, all that input comes back in spades. Waiting just ensures that the residuals from the injury will be more pronounced, and much more difficult to overcome! lois

Goodness....that's a long list of antiobiotics that those of us with MC should not take. I'm allergic to sulphur drugs like Bactrim. What's left? Mary

I have never found an antibiotic that I tolerate but my family members have used Zithromax, Vancomycin, and the cyclines like Doxycycline.

Jan

I've always found that good old penicillin works really well for me, and for my family members. Amoxicillin (and Augmentin) have NO effect on us - might as well be taking talcum powder capsules! Tetracycline and eruthromycin have been OK, though I've only used them very rarely - and don't take antibiotics very often anyway. People take way too many antibiotics, and often for the wrong reasons. lois

This is going to be a long read but I hope you all take the time to read this. It really might help you or a loved one in the future.

Jan, thanks for the list. I knew you were aware of what direction I was heading in but I did not want to post a warning on the drugs as I am not medical savy and without your support. I agree 100% with you and I believe these drugs that cause muscle damage and severe pain to "normal" people could be a potential time bomb for MC patients.

Jan, Avelox and Factive are given as much as Cipro and Leviquin now. In fact, Avelox's profit margin has boosted to 10 million I think last year alone.

Lois, the problem with people taking too many antibiotics for no reason is the doctor's dispense them like candy. They all do it.

The adverse drug reactions (adrs) to fluroquinolones or simply quinolones are many. I am using the word adr's, however, I don't believe it is an allergic reaction to the drug. I believe that the drugs are poison and it is not IF they get you but WHEN. I, believe, like many other's who were poisoned that it does not necessary happen immediately. You can have minor adr's that you don't relate to the drug. Example, insomnia...well menopause causes that so why would you think it was the drug that gave you insomnia? Tinnitus, you are getting older and you have ringing in your ears, maybe it is a wax build up or just aging. Having pain in your arms and being diagnosed with carpel tunnel, only to wear the braces and it goes away and never comes back but you still do all the things that cause carpel tunnel. Even though I do have insomnia and rarely sleep, tinnitus which is frustrating, severe itching where I rip my skin open, shooting electrical pain out of no where...I am the lucky one. I don't have MC, my child does. But after investigating I knew this had to be bad stuff to begin with but for people with MC too. The second I mentioned my thought to Jan she was well aware of the drugs and what she thought could potentially happen to people with MC who already had some of the adr's that people get from fluroquinolones.

I had taken Cipro, Leviquin and Factive unknowing that the things happening to me were from this drug. So, when I was given Avelox in March of this year within 5 minutes I was itching like crazy. I rushed back to the doctor and by that time, within 20 minutes I had successfully ripped open my skin and was bleeding on my face, scalp, arms and legs. I was taken off of Avelox and I was fine and the scabs healed. By accident, my doctor gave me Avelox again in May. Within 5 minutes, I was on fire, burning inside. I rushed back to the doctor but never made it. I was 1 block away when I almost crashed my car from dizziness. I pulled into a parking lot, opened the door and fell out on the pavement. Somehow I happened to put the bottle of drugs in my hand and was holding it for dear life. Thankfully, my local fire department was 2 minutes away and found the bottle in my hands. Since I am writing the outcome is that I made it to the hospital in time to be saved. I bumped into someone two days later in one of our local emergency service departments and when he saw me he was shocked. He had heard over the radio that she's not going to make it and was waiting for my husband's obituary to attend my service. The weeks following I was going through some serious anxiety and panic attacks. I was baffled and feeling like I was loosing touch with reality until one day I said something has to be doing this to me and I have to figure it out. I had to live for a reason. That is when I began investigating the drug and started to realize that the Cipro, Leviquin and Factive I'd taken in the past correlated with all the things that had gone on with me. Avelox was just the icing on the cake, kind of like telling me...you fool. Your body tried to warn you over and over about these drugs but you did not listen. My purpose, I believe and why I am hear to tell you this is that HE decided it was not my time to leave my child with MC and I just kept seeing the connections from MC sufferers and people who had been poisoned by fluroquinolones. When you look at the things that happen to people that have taken these drugs and what people with MC suffer from it is identical and scary. Back to saying I am lucky. I don't have the pain, muscle damage that so many other's who took these drugs do that are similiar to MC. They are harmed for life, just like my son living with MC. So, I am lucky to have survived and very lucky that all I have is insomnia, tinnitus, itching and electrical shocking sensations. The anxiety is gone. Most people floxed by this drug have anxiety and panic but that is the only thing that seems to go away.

Jan, on that note, I am going to email you. I really think that you can help those who suffer from these drugs and I know you can help to make sure that people with MC do not take them. Your diet for MC worked for me during my worst of times. I see so many similarities it is really mind boggling. So many people have the symptons of MC and it is from a drug not genetic.

Watch what you take, be fluroquinolone free.

Jan, Fibromyalgia keeps coming up with regards to fluroquin adr's. What is so similar that this forum addresses this issue also? It just seems that everywhere I look and turn fluroquins adverse reactions and MC have so much in common.

Thanks for sharing your experience - eventually there will be lawsuits settled and many of the drugs will be pulled, but in the meantime the companies are trying to make as much money as they can. They'll still have plenty of profit even after they pay the settlements.

I think the reason it's seen related to fibromyalgia is because one of the major causes of FM is hypermobility syndrome. That predisposes someone to dislocations of joints and there is usually a defect in connective tissues like tendons and ligaments. So that is another class of people who are very susceptible to the damage done by these drugs.

Jan

Not to sure what "Mandible" is but pending your daily activies you maybe able to adjust within your lifestyle, all physical activies should be evaluated, climbing stairs, walking, lifting so far I've notice that MC is seasonable I've been diagnosed when I was 17 now at 49 I've manage to adjust my daily actities, clearing paths in my house, walking slower, give yourself more time to do more, the therory in my mind is your body acts alot more older than we care to admit, we are stress, frustrated and the fact that most of us stuffer other symptoms as well, me I have degenerate disk in my neck, it's painful & my stiffness is my least problem, take it easy see meds from nerologist.

Tim - You're right about that! I am 57 years old, and my MC (even though I did not learn that this is what was wrong until I was 54) has been like a slow but very precarious roller-coaster all my life. I have had periods that were so bad that I could barely move until I was really warmed up, and other times, sometimes for months or even a few years, where the symptoms were relatively mild and manageable. My childhood, teens and early 20's were just horrendous (?hormones?), then my later 20's were tolerable, etc. We just have to keep our wits and our sense of humor! Lois