lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I am grieving for you jj. Please go to www.fqrearch.com (or net). Here you will find posted all the research that demonstrates the kind of adverse drug reaction you are talking about, what the mechanism of action is behind most of it, and how long healing can take.
There are several support groups you can join, much like this is a support group, but I have to warn you that there are some nasty moderators on one of them that have a vested interested in NOBODY getting well after being floxed.
What I mean by that is that they want to bring down the drug companies, and they need to keep up their number of tragedies. They have a right to be angry, the amount of pain and suffering that has been inflicted by fluroquinolines. But they reject anyone entering the discussion with talk about complete remission. I experienced this on ONE of the support groups, not all of them.
My experience on that one group was the following. More than one occasion a person entered the support group talking of suicide. In addition to tendon and ligament injury, floxing can cause severe nervous system injury.
I tried to tell these people that they must believe they will heal, that statistics support a certain percentage of complete remission and healing, and so forth.
One of the moderators tore me to shreds, including foul language, told me what a fool I was, and so forth in the most uncivilized manner, over and over, because I was giving the new guy "false hope."
Now, I used to work as a "crisis line" volunteer, and had a year of training at this. And I can tell you that when a person is talking about killing himself, you present all the evidence suggesting things will get better.
So, go there seeking the information, but remember that the group is made up of "personalities."
Yes, I was floxed severely. I was suicidal, I was on death watch. All the tendons in my body were damaged and the miniscus disk in my left knee ruptured. All of this on top of lyme and babesia.
I tried to tell the doctor what had happened, and he initially couldn't believe it. He said my knee hurt because I was overweight. I sat on his table a total wreck, sobbing.
But my lyme doctor was a good man, Dr. H in NY, and asked me to bring him the drug trials and post marketing evidence that demonstrated mechanism of action, and I did that.
Then, he could not deny it.
Yes, to someone who asked, when you are floxed, you know the difference between it and a herx. Without having having it happen to you, it is impossible to understand that, but the set of symptoms, or damage, that you are strapped with following a floxing is clearly a separate tragedy.
And so I leave you with this. You WILL improve, and possibly recover COMPLETELY. It has been 2 1/2 years since my floxing, and I have a little of that horror left, maybe %10.
I don't have my private messaging activated, but if LouB wants to give you my home email, he certainly can do this.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Need to post a correction. Go to www.fqresearch.org for research information.
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Thank you for this post. I don't even know if I have Lyme yet, but highly suspect that I do. I have never felt as horrible as I do at this very moment, and cannot believe that I am telling this to total strangers. I am VERY weepy, which it totally out of character for me. It just comes over me. My physical body will not cooperate with what my brain is telling it to do. I will find a way to control my symptoms and not let my symptoms control me. Just have to figure out how, cause I can't live like this. It helps to know that others understand, cause I think my family is getting frustrated with me.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
| IP: Logged |
What would be good is if you could get bloodwork done by a place that tests for bacteria and viruses.
I was tested through the Fibromyalgia and Fatigue Center in Atlanta and found out I have lyme disease and 3 active viruses. I've never been to a regular MD who tested for these.
Also, the Fibro and Fatigue Center uses the Western Blot to test for Lyme through Igenex (lab) instead of the usual Elisa test which many times comes back a false negative.
The FFC took 23 vials of blood on my first visit. They check all your hormones and will get you stabilized before checking for viruses and bacteria.
I've seen people in there getting different types of IV's from other states and one woman was from the Caymen Islands! Its worth the travel to get a diagnosis.
I'm sorry you are feeling so awful. Even though we are all struggling, the first step is getting a diagnosis which will help get you on the road to recovery.
Thank you so much for sharing your story with me! At first, I thought I was alone, but, like you, I sought out information on the internet and found many like you and I, who react violently to the ingestion of fluoroquinolones.
I'm not sure how much it has to do with genetics vs. the medical profession, as well as the FDA, not admitting their toxicity. While others are free to choose to take one, I, for one, will make sure I never take one again for as long as I live.
I am so very sorry about your experience, as I share your horror at this very moment! I sincerely appreciate you giving me some insight though into what I can expect, especially concerning the forums! You are right that a positive attitude goes a long way! That and time is what I'm clinging to right now!
My nervous system has been most affected, so, hopefully, if I watch what I do, I won't have any tendon problems.
You said it exactly "Yes, to someone who asked, when you are floxed, you know the difference between it and a herx. Without having having it happen to you, it is impossible to understand that, but the set of symptoms, or damage, that you are strapped with following a floxing is clearly a separate tragedy." This is nothing like anything I have EVER experienced in my entire life and I hope I NEVER have to go through this again! My heart goes out to those that will or have had to endure this!
I believe that I am past the acute stage with suicidal thoughts, anxiety, and insomnia though, although they are still there to some degree. I can still tell that my body has been severely affected though and is just not right. It's so hard to put into words, but my nervous system has been so severely whacked and is very out of sorts! At times, everything increases in intensity, sometimes without any stimulation, but mostly with, and I have these seizure like eposides, which even wake me up out of my sleep. I'm trying real hard not to live in fear of when the next one is going to happen though, although I'm nowhere near being able to leave the house, period.
Thank you for giving me hope for improvement! I do believe that I will fully recover in time, but I'm still too early into my reaction at only seven weeks. Right now, I'm focusing on the fact that I'm not as bad as I was when it first happened, so at least I'm moving forward, although it's still absolutely horrible!
What fluoroquinolone did you take, for how long, and what for?
How come you don't have your private messaging activated?
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Private messaging not activated ....I just need it that way for a while. "Tabbytamer" on this forum has my email and you could get my private email from her. She is not feeling well right now, so don't expect a reply in 24 hours.
My story in a nutshell....lyme since age 11. Undiagnosed.....twice infected while in my mid thirties, still undiagnosed. AT this point, I lived in Connecticut, had severe night sweats and migrains, every lyme symptom known as well as bi lateral bells palsy, and still being told I had Fribromyalgia.
Educated myself and diagnosed myself with lyme and found a lyme literate physician, Dr. P in Connecticut, and started treatment in 2002, December. Now, I am 42 years old and have been sick since I was 11 years old with lyme, and who knows how long the babesia has been there, but I've had treatment for it four years now and it is still controlling me.
In February of 2004, I received Cipro. I was so sick with that I could no longer walk, the slightest clicking sound in a room sent my body jerking, anxiety landed me in the hospital, crying jags caused me to hyperventilate and my husband had to come home from work. Needed surgery on my knee, achilles tendons raw and swollen hot, I slept 20 hours a day ......
I bet this sounds familar. But my doctor thought it was a herx, and switched me to Levaquin! Another three weeks after three weeks on Cipro. At that point, I became suicidal.
How can a person suffer so much with lyme and babesia and pray to God for healing, never giving up hope. And then be given.....a floxing!? What kind of God does this to a person.
Such was my thought process as I feel into the deepest depression. (Now I have damage from flagyl, so I have to wonder if you would be sensitive to that to, or if the floxing caused me to be sensitive to flagyl).
So you are seven weeks out since the event...I should tell you that most people find that after a floxing, it takes several months for the symptoms to stop morphing. They grow and change, and receed, and so on, before you level off and start to recover. For me, and it is different for everyone, I continued to develop new symptoms for up to 6 months. So if you start to get a new symptom, DON'T take this to mean that you are going down the abyss and will NOT recover.
You can recover, and it will take time. For all things there is a reason. Now I sit here and I can help you, I can tell you that you will get better. Hoards of people emailed the FQ forum when I got attacked for being positive. Hoards of people wrote in to report that they had recovered...some in six months, some in four years....but they did recover.
When I get really down I think about someone like Christopher Reeves. So young and handsome and talented. He had it all, and one false slip over the top of a horse and it was gone forever.
I can still walk and drive and crawl around on the floor with my children, and jump in the pool in my back yard and splash my husband.
You just have to remember things like that. I used to wonder, when I was younger, what the purpose of living is. What was my purpose.
But my illness showed me the answer. Our purpose lies "in the moment." Don't wait to enjoy it later. All that matters is "in the moment" of course without loosing sight of the afterlife.
I'm getting so preachy I'm making myself sick!
You will get through this. keep me posted.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
posted
What is a "floxing", and what abx are involved? I am to start levoquin in 2 months-is this what you mean?
Posts: 561 | From eastcoast | Registered: Aug 2006
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
A lot of people are very sensitive to fluoroquinolones - as was I. I had severe tendon problems, twice on Cipro and once on Avelox. And none of the doctors knew the drug could be causing the problem.
I probably had neuro problems due to fluoroquinolones, too, but I blamed them all on Lyme.
Somehow my body told me to stop taking those drugs. And finally I did find a reference to the possibility of fluoroquinolone effecting tendons in dogs, hidden in the fine print of the package insert.
The only thing you can do is rest, take ibuprofen or other anti-inflammatory and use ice packs.
There is an excellent book "Bitter Pills" which you can probably get reasonably on Amazon (see the Shop Now ad on the left. Lymenet will get some funds from your purchase).
Finally, the FDA had to put a warning on the package insert which is what is published in the Physicians Desk Reference.
posted
Hi there, does anyone how I can get in touch with "lymewreck36 ", Mary?
Thank you so much!
Posts: 1 | From Chandler, AZ | Registered: Oct 2014
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
If you have even a slight pain on levaquin that comes and goes, stop immediately.
On my 7th pill I had a very slight pain in my achilles that came and went quickly while doing nothing, just sitting and having breakfast.
The 8th pill of levaquin did me in. I still can't wear proper shoes, my feet and achilles hurt so bad. The floxing happened a month ago.
If you go to askapatient.com you can read reviews. I read them before taking levaquin and it was hard for me to believe 1 pill could cause this much havoc.
All I can say is these reviews are NOT an exaggeration. I learned it the hard way.
This site has been helping me A LOT. I've been reading recovery stories and people take different paths. What works for one person, doesn't necessarily work for another (it's a lot like Lyme).
Yes, it sucks having MCS, Lyme and being floxed. I'm not a pollyana about it, but not a negative Nellie either.
I acknowledge the reality and do something about it. I believe it's important to never give up and keep trucking.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic