(copied from another forum I wrote this for... can barely write one of these!)
So... Here's my story. Try to bear with me.
July 31st I was prescribed Levaquin re: painful urination and a fever. I had no idea what Levaquin was, had never heard of a flouroquinolone, and simply took a 500mg dose at about 3pm, which, I was told by my doctor, would immediately help the pain (I would never call the doctor regarding a fever, I just had the painful urination for a few days which was scaring me). Within 1-2 hours, I thought I was high on some sort of hard drug. I remember numbness in my legs which started making me feel odd. I got up from watching TV on the couch and thought I was having some sort of panicky reaction-- but boy was I underestimating (A few years ago I had a panicky response to pot... developed physical anxiety which put me on Paxil for awhile, totally cleared it up and have been off for a year with no problems... looking back on it I simply had low serotonin levels due to the chronic marijuana use).
This reaction was extreme in comparison. (From 1 pill!!!) In those first few hours I literally "felt my brain frying". I could not get words out to my mom to explain what was going on; I could not keep myself up. It wasn't like I was paralyzed, but more like I was walking on a water bed. I had no balance, my gait was a joke, and I could not "think". After the next few days went by, I knew this was not a panicky reaction involving serotonin or anything like what happened before. The confusion did not subside. I have never had intellectual problems in my life, even when I had panic several years ago. I'm barely 19, a sophomore at the Univ. of North Carolina, got a 1520 on the SAT, and now I am utterly lost on a daily basis.
In the ER on the weekend, they believe it's swine flu, and that these neurological symptoms after the Levaquin are coincidental and that I am experiencing acute dehydration (I've been drinking fluids like it's my job). They call back the next day-- I do not have the flu, and my tests show that I was not dehydrated when I came in. The fever broke in a few days, but painful urination was still present. Went to campus doc, had urethral swab, determined genital HSV-1 infection. Meanwhile, the neurological symptoms persist. I am so debilitated I cannot safely drive for the first few weeks.
By the end of the month (Aug 31st), I randomly have an intermittent low grade fever. Still, the symptoms acquired after the Levaquin have not improved. Finally find out I have Rocky Mountain Spotted fever. I took Doxy for two weeks and wiped out that infection. After completing that regimen, I saw an Infectious Disease specialist. He tells me that my test results are borderline for RMSF, suggesting a possible mild current infection, or a past infection. (So... I had this in my system and did not have any problems with it-- my body took it fine and it finally came out a little after all this damage to my body re: Levaquin and herpes infection).
By the end of September, I am really scared. The symptoms (from the initial Levaquin reaction) are still strong:
The initial leg numbness has turned into deep pains in my knees and feet. I can't tell if it's my nerves or tendons or muscles. Sometimes it feels like an IV is running through my veins, sometimes my muscles just hurt, and sometimes the actual heels and balls of my feet hurt, like I have been wearing cleats while walking on pavement all day. All over my legs I have sensations of being "touched"-- not in specific areas-- but constantly moving all around (excited/damaged nerves?). I am so weak and in pain the only exercise I can muster is a <30 min. bike ride (I used to run miles at a time, and play competitive soccer and basketball). There is a terrible waxing and waning of pressure in my head all day and night. I am so abnormally fatigued and heavy, but I cannot sleep for more than a few hours every night. I'm "wired-tired". I wake up squeamish, with palpitations, but it is not panic.
*****However, the worst is this altered mental state which I can only depict as "brain fog". This has been the case since day one immediately after ingesting the Levaquin. There are literally no "thoughts" going through my mind all day, every day. I have a terrible time putting words together to form sentences in my head that I want to say. I am in a daze and quiet nearly all the time because of this. I receive a text and cannot remember 10 minutes later what exactly it said. It is a struggle to simply enter data at my job. I have had to withdraw from school for the semester. The thought of taking Arabic (or much less any class) is comical at this point-- nearly 2.5 months later.*****
I tried Paxil again for a week in August which made me super agitated and sick, and it did not "clear" my head-- this altered cognitive state is clearly not due to a serotonin imbalance. (Unless Levaquin can severely diminish serotonin, and I was experiencing initial side effects and did not give it enough time... any thoughts on this?) I don't like taking benzodiazapines (Klonopin). Of course it helps some with sleep, but it is obviously not helping the mental fogginess/deficits. I have had a normal MRI (so this is nothing Herpes or RMSF related. Hmm, must be Levaquin!), and a neuropsychological work up, which measures awareness, attention, memory, etc. The results were average, yet the neuropsychologist said I should be higher up given my abilities, suggesting a global problem, but no specific issue. In fact, she said my primary memory was on a very high percentile. Still, I am very dysfunctional in my day to day life when I am not being directly questioned/tested for memory.
I can deal with the pain; it is not severe to the point that I cannot walk. However, what I cannot deal with is this awful cognitive state. My brain chemistry has clearly been damaged/altered. My hope in posting on here is to get as much information as I can in order to "get my brain back" ASAP. (Other than reading the typical "there is no cure, this is going to last however long it's going to last." I can't handle that reality. I'm barely a legal adult and I have never had a serious health problem before! I'm going to try everything I can before simply giving up and waiting this out.) None of the doctors I have seen know much about Levaquin, much less how it is specifically causing the symptoms I am dealing with. I need to know how the Levaquin has affected/is affecting my brain. All I repeatedly come across is "CNS stimulation." Seriously, what the **** does that mean?? What a joke of an ADR description. I have read it binds/damages GABA receptors. An interesting article on mercola.com says the following are causes of floxing:
1. Inhibition or disruption of the central nervous system GABA receptors 2. Depletion of magnesium and disruption of cellular enzyme function 3. Disruption of mitochondrial function and energy production 4. Oxidative injury and cellular death.
What is likely to have happened in my brain based on my symptoms? Any of the above? What should I be working to correct in my brain (and body)? Drug-wise? Supplement-wise?
Dr Eric Braverman has excellent books for brain neurotransmitter support - took a little study to put the whole picture together as to what to take = I get best prices on amino acids at discount anabolics. Amino acids combine with b vits to enhance the brain fuction. Sunny days help.
I know how you feel. I was just given Cipro ( the same family of antibiotics) and after 2 days taking them, i awoke to a jolt in my body and my heart racing, electrical currents going down my arms, and a general feeling of dying.. This was on April 2. Since i have been to the ER 6 times and all my tests came back negative.. perfect shape but the medical field is trying to say i have anxiety and put me on med's.. the med's make it worse! I have maybe 1 hour every couple days where i feel great.. otherwise my vision has changed, i have the extreme mental fog, neck and head pressure, trembling, sporadic pains day to day. I was carrying my 6 mo old daughter one day and almost dropped her because i had lost feeling in my arm. No-one believes it is from this medication. It is now May 18th and i am still having major muscle weakness, heart palpitations, vivid nightmares that wake me up with my heart racing, depression. It is so scary.. From reading everything online, it makes me more anxious that there is nothing you can do but wait it out.
I was wondering since it has been a couple months, how you were feeling. did some of the brain fog, anxiety, muscle aches go away??
Just wanted to get some hope..
It will get better. After taking 3 500 mg Cipro on September 25, 2007 I experienced it all - the sensation of burning all over my body, heart palps, tremors that lurched me awake as soon as I would start to fall asleep, dizziness, "weird" vision, weakness, joint pain and more. The worst of it lasted about two weeks, during which time I visited the ER several times only to be told everything looked "normal". I felt like I was dying, even coming very close to suicide several times during this period.
The only thing that pulled me through this time was desperately wanting to get better and live for my children and my husband. I was only 27 and could not accept that life was over for me. I decided to to push through, received acupuncture treatments (this helped immediately with the nerve and sleep issues). I took many liver-supporting supplements like Milk Thistle, ALA, Chlorella, Spirulina and MSM. I also decided to start eating a 100% raw vegan diet about 6 months post-Cipro. I feel that my healing really began to accelerate after the diet change. At one year out, I no longer had any noticeable symptoms, although to this day I occasionally feel a twinge in my legs and I do still have the eye floaters that I acquired from the Cipro. I no longer eat 100% raw vegan, as my constitution started to demand some meat last winter, however I do credit the diet with a good portion of my successful recovery. If nothing else, fresh green juice twice per day along with the green supplements like Chlorella provided massive therapeutic benefit in my case.
It takes time, but you will heal. Your body knows what to do, and it will happen. Sleep is crucial. Valerian Root tincture worked for me to relax my nerves so that I could sleep, magnesium helps with this as well. Eat high-quality food (organic is best). Keep in mind that conventional meats contain antibiotic residues that could exacerbate the quinolone reaction. Some people that I have been in contact with have had success with naturopathic treatments like glutathione therapy - I couldn't afford that at the time, but coffee enemas help the liver produce glutathione and those are cheap and easy. I still use them to this day when my liver seems to be overburdened.
When things settle down a bit, see a qualified naturopath and have your thyroid and adrenals evaluated. I suspect that these drugs affect the endocrine system. My ordeal with the quinolone took me from borderline hypothyroid to significant hypothyroid, and 3 years later I am finally getting appropriately medicated for it. It may have also altered my other hormones, as my estrogen came back at a level lower than a female in menopause and lower than a one year old baby should have. I am currently working on that particular issue.
DO not despair - have hope. I wish someone has said that to me when I felt like my life was over. It's not over. You are not damaged, or destroyed, your body will repair. Give yourself a few more months, and possibly try some of the things that I have suggested, as they did help me.
Thank you Laurie!
It is so hard to imagine your life ever being the same again after being so badly attacked!. I myself want to just die everyday!. My mind has been so badly altered that i am constantly anxious or depressed fighting with my mind so badly. I cant even be around my kids.. I have about 4 good days than bam, I get hit with an episode where nothing helps.. tremors, panic, extreme weakness where i cannot walk, heart palpitations, muscle pains everywhere. My vision is so bad but i cant explain how i see. its like i have waves of liquid in my eyes and they are very sensitive to light. I have been to the ER 6 times since this happened to me @ 8 wks ago. I have had diarrhea for 2 months straight, lost 30 pounds and have extremely dry mouth and eyes. I just cry all the time. It makes me hopeful that it will get better but i am always reading the stories of people 5 years out that have had no relief.. I just want the extreme panic and anxiety/depression/brain fog to go away!!. I am no good for my kids being this way. feel like i should be institutionalized. My husband has been great but he has to go to work which he travels a-lot and i am afraid to be alone. Just breaks my heart.
your story has given me some hope.. Thank you very much and i will keep you posted..
I just had to update that i am now 9 months out and SO much better.. The Panic/ Anxiety is what i would call under control. I followed much of the advice from other Floxies with getting acupuncture for the neruropathy, tremors and burning skin.. this helped so much.. I also started working with a natural path who has helped me tremendously.. It was my adrenals that were severely hit and we worked hard for months to balance them out!!.
What is left is my vision which is getting better every day.. I can now sleep without melatonin and only take my valerian root/passionflower when i feel a bit wound up.
It is still confusing what happened to me or what this pill does to the body to create such a mania, psychosis state but i can honestly say i never thought i would get better .. But i am.. I can care for my children again and have been having a good time again going places..
I cannot take any antibiotics since this happened as every time i do, my vision and panic/anxiety comes back almost immediately. I am working with an eye specialist who seems to think this pill damaged the nerves and muscles in the eyes as well and told me that by 18 mo i should heal however he has me doing visual exercises that are helping alot with my focusing and vision in general.
I had to post an update as when this first happened, i truly thought it was over for me having to live the way i felt.. and i am doing better.... i looked online and emailed a hundred people to see if anyone got better and never got responses but from only a few who said they did.. I believe everyone gets better in some way.. but again time has been the only thing for me along with detox, sleep, acupuncture, and having a positive attitude even when i felt like dying..
I don't think many post as it is something most want to forget once some relief is established..
I hope this helps someone..
I can honestly say that i feel better than i have in years!!. perhaps because i cherish life more or the fact that detoxing and balancing my body has been what i might have needed for a long time!!>
Sorry this is so long.. i pray for those going through this and hope this helps someone out there.
When I read your post it brought back a time when I first became ill. I don't think its the levaquin but that you in fact may have developed what doctor's coin Environmental Illness which comes with various symptoms, from mental confusion, reduced cognitive function, chronic fatigue, fibromyalgia which presents as body pain (which could be a result of a magnesium deficiency), chemical sensitivity... I had the same thing happen to me that you described with inability to balance..it was like my inner ear turned up side down. i was falling off the toilet into the tub and had to be held up just to sit and void. I thought I was dying...but its been since 2001 that this occured. I have found great doctors in Nova Scotia at the NS Environment Health Centre who have helped me to get back my life. I would highly suggest getting a book on environmental illness and see if you find any similarities. I wish you good luck and don't be afraid to take levaquin..I think it was just a combination of all that your body was going through..I had the similar experience after the doctors tried me on Z-Pack ..it didn't work, then they gave me 2 weeks of Biaxin, still no improvement and then finally the Levaquin. You may want to get information on Candidais Albacanis to see if you have an overgrown cause that can cause alot of the symptoms. Good luck and don't hesitate to email back.
No my friend, it is a cause of the Levaquin. Levaquin, being part of the fluroquinolone family, is a potent antibiotic that was initially used to treat cancer patients.
My story with Levaquin began a few months back, and besides having constant brain fog, most of my symptoms subsided. I was diagnosed with chronic sinusitis, and was perscribed Levaquin by my PCP.
I was perscribed 5/750mg tablets, but only took three because I noticed a tingling sensation in my arms after day three so I thought it may have been a reaction to the drug.
After that, it all went down hill. Tremors, joint pain, nausea, I had it all. Here are the things that I did in order to relieve most of my symptoms (I am currently 2.5 months out, and still have constant brain fog, but its something that I am learning to live with...hopefully with time this will go away as well).
First thing is find a naturopathic doctor and get the following:
1) IV hydrogen peroxide therapy 3x/week
2) IV GLutathione therapy 3x/week
3) Hyperbaric oxygen therapy
I did all these treatments for one month to try to revive my cells and rid my body of the harmful chemicals.
Then I did blood work, and noticed by testosterone levels were very low, and my Candida IgG (antibody count) was very high.
This is currently where I am in my treatment. Now because of the antibiotics I had taken, and because of the Prednisone I was perscribed for my tendinitis, I think a lot of our brain fog can be narrowed down to three things:
a) High levels of Candida which can cause brain fog
b) Just a side effect of the fluroquinolone family
c) High levels of anxiety and depression
Since my testosterone levels are low, I am going to check to see if my FSH (follicle stimulating hormone) and LH (Leutinizing hormone) are normal because if they are low, then this could be a sign of pituitary insufficiency (I will follow up on this).
I have as of today gone on a anti-candida diet, which includes the following:
a) Probiotics (two types: Orthobiotic and Saccharomyces boulardii) -- company name is Ortho Molecular Products
b) Eliminating high glycemic foods temporarily (all fruits, white rice, bread, pasta)
c) Increase in veggies and lean chicken
d) Increase in brown rice, and black beans
I am able to go back to my exercise routine fortunately. My tendinitis is nearly gone (I get some sores in my feet, but its getting better). My numbness has left me after 2.5 months.
I spend about 15 minutes 5 days a week in a sauna as well.
Here are the suppplements that I am taking every morning:
a) Probiotics that I mentioned (not a supplement but worth reiterating)
b) Vitamin D3
d) Chelated Magnesium
e) Resviterol (immune booster)
f) Astragalus (immune booster)
If anyone has any recommendations for brain fog I think a lot of us would be greatly appreciative. That is my last big symptom, and I hope it too will be resolved. After it is resolved I will be creating a website dedicated to this problem, and the route that I took to cure my ailments.
Hey I'm working on recovering from Cipro poisoning too. Yes quinolones are fluoride derived! I.e.poison! I am having some success. Well I seem to have solved the brain fog issue first, joint pain and muscle twitching are the remaining ailments. Research fluoride detox as it will help guide you.
These 5 supplements changed my life along with an all organic candida friendly diet:
Cal/Mag/Zinc double recommended
Selenium double recommended
Vitamin C 10-15 GRAMS a day
IODINE 50mg/day (I found the Nascent Iodine from infowars life store to be my preffered Iodine of choice some like the Lugols but I've read it tastes terrible and some have reacted negatively to it, this is glycerin based and I love the taste, I look forward to taking my iodine everyday! No joke)
BORAX 1/4 tsp/day in 32oz water (for the boron content, which binds to fluoride)
InfraRed saunas help a ton too.
Many other supps can be taken to improve the effectiveness of these main ones. I'm in the process of writing an extremely detailed recovery log. I will share more upon total success (do not want to mislead if possible) but my brain fog is gone! I can think again, remembering again, sense of time is back all upon starting the iodine protocol. FLUORIDE competes for position with IODINE in the body especially the thyroid! Which explains my throat swelling after taking 3 days of Cipro (documented by local ER). Upon taking large doses of iodine to displace the fluoride I noticed immediatley almost a reverse reaction taking place in my thyroid. Tingling and slight discomfort but it felt good and is never constant seems to fade within 5 minutes. I suspect the iodine is attempting to regain its position in the body. Every cell/organ stores iodine, so if you deplete it with its natural predator (fluoride) you will have all the symptoms described in this thread.
WHEW! Sorry for the long explaination. Always remember to keep your spirit high. A positive outlook goes a long way. Hope this helps someone! As I was just like most, depressed, suicidal, felt like I was dying etc. The body is an amazing thing and can heal itself given the right tools.