kathy 622

Discussion in 'Fibromyalgia Main Forum' started by cbs1234, Aug 23, 2008.

  1. cbs1234

    cbs1234 New Member

    Kathy,

    You seem to have a singular focus on lyme as the potential cause of everyones fibro/cfs like issues. You say I have an agenda on the drug side effects issue. You are correct.

    You may or may not realize that drug side effects are responsible for well over 100,000 deaths per year in the US (overdosing, incorrect drug, "rare" side effects, etc). This number of deaths is dwarfed by the number of serious disabling side effects from drugs. Just read the stories about vioxx, the statin drugs, the diabetes drugs, the fluoroquinolone antibiotics, etc, etc and you will see the problem is HUGE.

    So, yes I am on a mission. You are on a mission too, but the lyme problem is miniscule in comparison to the problem related to drug reactions. The chance of a large number of the folks on this board being bitten by a lyme infected is much, much, much lower than the chance of being hit by the side effects from a drug (almost everyone on this board is taking one or more drugs).

    So, yes I am on a mission to warn of side effects because I was so severely impacted. And, there is a high likelihood that many others on this forum could be victims too due to the high number of drugs being consumed. Much less likely that they are the victim of lyme (although as I have said, there is definitely the possibility however low it is).
    [This Message was Edited on 08/23/2008]
  2. EricaCFIDS

    EricaCFIDS New Member

    What are you suffering from? Is it FM/CFS then as a result of a severe drug reaction? You don't say any history in your profile, so I was wondering what your situation is. It helps others to learn.

    Thanks!

    All the best,
    Erica
  3. cbs1234

    cbs1234 New Member

    Here are some snippets from old posts--

    what it did 01/14/05 12:38 PM

    Prior to the levaquin, I was a healthy, active and very athletic 38 year old father of two young kids. While on the levaquin, I developed a list of side effects a mile long including the problems you are having. But, they crept up on me during my 28 day course of treatment. By the last few days, I was feeling like you plus had horrendous tendon and joint pain (check the package insert for tendon pain or do a google search for levaquin and tendons), muscle twitching and some other symptoms. By the time the doctor and I figured out I was having a drug reaction, it was too late. The symptoms continued to multiply for about 3 months AFTER stopping the drug including vision problems, hearing problems, numbness, tingling, etc. etc. I've gotten past many of the symptoms of my reaction but am left with relentless full body tendon pain similar to what fibro folks deal with.

    Prior to the levaquin, I was running 15 or so miles a week, playing singles tennis in 95 degree heat, walking 18 holes on a hilly golf course in high summer heat and during the winter I was an expert skier. Not bragging, just giving you an idea of where I was. While on the levaquin, I turned into an 80 year old man overnight. I had tingling, numbness, vision problems, tinnitus, cold hands and feet, night sweats, insomnia, heart palpitations, and dibilitating joint and tendon pain. I had a hard time walking for about 8 months, lifting more than 5 pounds was extremely painful, etc. You get the picture.

    Since my reaction in July 2001, I have been through several periods of recovery and relapse. Sounds a lot like fibro you guys are dealing with. I hit a severe downturn in late November with horrible pain in the feet, ankles, knees, hip, shoulders and elbows. Not deep in the joints, more in the tendonous tissue around the joints. ITs very discouraging. But, I contine to fight it. I ride the recumbent bike no mater what at least 4 times a week. Right now I have to force myself due to the pain, but I think it helps. However, no weightlifting for sure.

    IF you want to see some real horror stories and info on the fluoroquinolone antibiotics, go to www. geocities.com\quinolones or www.medications.com and type in levaquin in search box


    [This Message was Edited on 08/23/2008]
    [This Message was Edited on 08/23/2008]
  4. gapsych

    gapsych New Member

    So sorry what you have gone through. It must have been horrific.

    I do not think there is anything in the rules of Pro Health that you have to put anything in your bio. It is your choice. Lot's of people choose to not put anything in their bio.

    I think if there was only one rule here it would be that we have the right to post on this board but also the responsibility to post respectfully and appropriately.

    This applies to all subjects on the board.

    GA
    [This Message was Edited on 08/23/2008]
  5. Catseye

    Catseye Member

    Are you sure you didn't develop gut dysbiosis from the antibiotics? That's what antibiotics do, it's not like it's a stretch of the imagination. Gut dysbiosis pretty much destroys your digestion, detoxification and immune system capabilities and can cause symptoms like cfs and fibro. Maybe you had this happen along with a reaction to the drug. My liver was pretty sensitive and I couldn't even take antibiotics for simple infections I got while I had cfs, like a UTI, strep throat and a couple of ear infections. I found out raw garlic kills these things and used it, instead.

    Incidentally, because of all the talk about lyme on here, I went ahead and got tested again since the first was an unreliable negative test, and I tested positive this time. It sure explains my symptoms. But I'm not using antiobiotics to treat it. I've been with a new doctor and undergoing treatment for cfs for 5 months and we just found out about the lyme 2 months ago. My treatment is focused on getting the guts/immune system working again. I'm using just diet and supplements as treatment and it's working beautifully. All my symptoms are drying up one by one. I used to have a great job running some tax offices with my dad and making good money. This cfs mess reduced me to a bedridden wreck, in agony all the time and dependent on my husband to bring me food and water and take me to the bathroom.

    It took me a long time to figure out what was wrong and I had been treating myself for a long time, but now I found this health expert who recommends everything based on solid test results instead of just general diet and supplement recommendations. Now I can ride my bike again and get around and do what I want, within reason. I still have a little ways to go, but I'm fully expecting to get back to normal.

    I'm not so sure about lyme being so over diagnosed. And I don't think you need to treat it with antibiotics, either. I don't remember ever getting bitten by a tick or having a rash, but from what I'm reading, I'm willing to bet mosquitoes or even sex can be the culprit. I already got a nasty bout of dengue fever from mosquitoes last year and had to be hospitalized for 5 days. It could have been worse, I could have had the hemorrhagic variety and bled out every orifice and under my skin like ebola. I just got the "can't eat/dehydrate the hell out of me" one. I just had to force myself to eat, which was gross because everything tasted funny, and I had IVs in for days.

    Anyway, is it possible you're equating lyme treatment with antibiotics and thinking doctors are using it as an excuse to hand them out? I do think antibiotics are bad because they cause dysbiosis and yeast infections which the doctors do not address because the treatment for those is diet and supplements which they won't do because of the ways drug companies operate with patents and such - doctors are merely drug salesmen. Terrific in the face of crisis, but incredibly inept in the face of chronic disease. Their lack of knowledge of what is happening in the body in our cases is embarrassing when you realize you can look it up on the internet.

    I'm thinking there really is more lyme than people think because it's so hard to detect. It sure explains everything for me. Personally, I don't think people should jump to antibiotic usage to treat it, especially if you already have cfs/fibro and the gut dysbiosis that usually goes along with it causing all the horrible symptoms. Then it sounds like you'd get much worse before you got better. But my dad had a tick on his back years ago and he got the rash and just a short term round of antibiotics and that was the end of it. I, on the other hand, went through "wish for death" agony for years and have a long climb out of it.

    For a detailed account of my treatment and the doctor who's doing it, see my thread titled "toxic guts, toxic body why do a comprehensive stool analysis". If you search above for "stool analysis" under title, it will come up. This treatment is rather expensive and the diet is getting monotonous, but it's working. You should look into this, my doctor (NOT a medical doctor, BTW, that's why this is working), is able to treat these diseases. And we are doing everything by phone and email; he's in Florida and I'm in the Dominican Republic.

    You can go on his site, becomehealthynow, fill out a brief questionnaire, get a free phone consultation and talk to him about your problem. Then, if you decided to let him help you, you go answer about 200 questions on his site, he orders some tests, has them sent to you, you get them done along with bloodwork, he gets the results and then calls you with specific results about what's causing your condition and what supplements the body needs to correct the problems.

    I know drugs are a big problem, especially like the NSAIDs that people take for pain. They cause digestive problems and inhibit important prostaglandins - problems which we already have, but I don't know what to do about that because I never really had much pain, just agonizing feelings that pain meds made worse. The guts have to be fixed and the only way to get rid of the bad bacteria and pathogens is to starve them out while you kill them off. You'll have to be willing to restrict the carbs in your diet to do it this way. It's really working, it's just taking a while. Better late than never, though. That's what I like about my health expert, he sees things the way I do: no drugs! They aren't what the body needs, we need to give it what it needs!
  6. erica741

    erica741 New Member

    Even though I have done a lot of research on Lyme, I had never heard of levaquin before you started posting about it. Is it commonly prescribed? I don't think it's commonly prescribed for Lyme, at least not until after first trying many other antibiotics with fewer risks.

    I'm pretty sure most people on this board know there are risks to taking medications. Most of us first analyzed the potential costs/benefits when making the decision to start our antibiotics, antivirals or other treatments.

    In many cases, many of us were so ill when starting such treatments that we literally didn't have anything to lose.

    Sharing your experiences with levaquin certainly does help me understand better where you are coming from. Would you mind sharing why you were put on levaquin?

    If you were offered a medication that research had shown would likely reverse the damage done to your body, would you try it?

    [This Message was Edited on 08/23/2008]
  7. EricaCFIDS

    EricaCFIDS New Member

    Thank you for telling more of what has happened to you. I'm very sorry. I was reading up on it and saw that nsaids, caffeine and warfarin all have serious drug interactions with them. By chance was that included in your time you were taking them? Did you doctor explain the serious risks and possible interactions? I just always wonder if doctors know anything and tell us what we need to know. It's scary and it's frustrating.

    I was also wondering why you were prescribed this for so long? I'm not familiar with levaquin at all. I've heard it mentioned, but know nothing. Please elaborate so that we can learn.

    I was just reading from what we all see when we get a new drug and it mentions this. You assume it is extremely rare, but obviously there are people who have serious side effects. Here is what it says (I'm sure you've read all this before):

    LEVAQUIN Indications

    LEVAQUIN® Tablets/Injection and Oral Solution are indicated for the treatment of adults (= 18 years of age) with mild, moderate, and severe infections caused by susceptible strains of the designated microorganisms in the conditions listed below. LEVAQUIN® Injection is indicated when intravenous administration offers a route of administration advantageous to the patient (eg, patient cannot tolerate an oral dosage form). Please see Dosage and Administration in full Prescribing Information for specific recommendations.

    Appropriate culture and susceptibility tests should be performed before treatment in order to isolate and identify organisms causing the infection and to determine their susceptibility to levofloxacin. Therapy with levofloxacin may be initiated before results of these tests are known; once results become available, appropriate therapy should be selected.

    As with other drugs in this class, some strains of Pseudomonas aeruginosa may develop resistance fairly rapidly during treatment with levofloxacin. Culture and susceptibility testing performed periodically during therapy will provide information about the continued susceptibility of the pathogens to the antimicrobial agent and also the possible emergence of bacterial resistance.

    Acute bacterial sinusitis due to Streptococcus pneumoniae, Haemophilus influenzae, or Moraxella catarrhalis.

    Acute bacterial exacerbation of chronic bronchitis due to methicillin-susceptible Staphylococcus aureus, Streptococcus pneumoniae, Haemophilus influenzae, Haemophilus parainfluenzae, or Moraxella catarrhalis.

    Nosocomial pneumonia due to methicillin-susceptible Staphylococcus aureus, Pseudomonas aeruginosa, Serratia marcescens, Escherichia coli, Klebsiella pneumoniae, Haemophilus influenzae, or Streptococcus pneumoniae. Adjunctive therapy should be used as clinically indicated. Where Pseudomonas aeruginosa is a documented or presumptive pathogen, combination therapy with an antipseudomonal ß-lactam is recommended.

    Community-acquired pneumonia due to methicillin-susceptible Staphylococcus aureus, Streptococcus pneumoniae (including multidrug-resistant strains [MDRSP]), Haemophilus influenzae, Haemophilus parainfluenzae, Klebsiella pneumoniae, Moraxella catarrhalis, Chlamydia pneumoniae, Legionella pneumophila, or Mycoplasma pneumoniae.
    MDRSP isolates are strains resistant to two or more of the following antibiotics: penicillin (MIC = 2 µg/mL), 2nd generation cephalosporins, eg cefuroxime, macrolides, tetracyclines and trimethoprim/sulfamethoxazole.

    Complicated skin and skin structure infections due to methicillin-susceptible Staphylococcus aureus, Enterococcus faecalis, Streptococcus pyogenes, or Proteus mirabilis.

    Uncomplicated skin and skin structure infections (mild to moderate) including abscesses, cellulitis, furuncles, impetigo, pyoderma, wound infections, due to methicillin-susceptible Staphylococcus aureus or Streptococcus pyogenes.

    Chronic bacterial prostatitis due to Escherichia coli, Enterococcus faecalis, or methicillin-susceptible Staphylococcus epidermidis.

    Complicated urinary tract infections (mild to moderate) due to Enterococcus faecalis, Enterobacter cloacae, Escherichia coli, Klebsiella pneumoniae, Proteus mirabilis, or Pseudomonas aeruginosa.

    Acute pyelonephritis caused by Escherichia coli, including cases with concurrent bacteremia.

    Uncomplicated urinary tract infections (mild to moderate) due to Escherichia coli, Klebsiella pneumoniae or Staphylococcus saprophyticus.

    Inhalational anthrax (post-exposure): To reduce the incidence or progression of disease following exposure to aerosolized Bacillus anthracis. The effectiveness of LEVAQUIN® is based on plasma concentrations achieved in humans, a surrogate endpoint reasonably likely to predict clinical benefit. LEVAQUIN® has not been tested in humans for the post-exposure prevention of inhalation anthrax. The safety of LEVAQUIN® in adults for durations of therapy beyond 28 days or in pediatric patients for durations of therapy beyond 14 days has not been studied. Prolonged LEVAQUIN® therapy should only be used when the benefit outweighs the risk [see Dosage and Administration and Clinical Studies in full Prescribing Information].

    Important Safety Information

    The most common adverse drug reactions (=3%) in US clinical trials were nausea, headache, diarrhea, insomnia, constipation, and dizziness.

    Levofloxacin is contraindicated in persons with known hypersensitivity to levofloxacin or other quinolone antibacterials. Serious and occasionally fatal events, such as hypersensitivity and/or anaphylactic reactions and some of unknown etiology, have been reported in patients receiving therapy with quinolones, including levofloxacin. These reactions may include effects on the liver, including hepatitis, jaundice, and acute hepatic necrosis or failure, and hematologic effects, including agranulocytosis, thrombocytopenia, and other hematologic abnormalities. These reactions may occur following the first dose or multiple doses. Discontinue levofloxacin at the first appearance of a skin rash, jaundice, or any other sign of hypersensitivity.

    Severe hepatotoxicity (including acute hepatitis and fatal events) not associated with hypersensitivity has also been reported. Discontinue immediately if signs and symptoms of hepatitis develop.

    Tendon ruptures that required surgical repair or resulted in prolonged disability have been reported in patients receiving quinolones, including levofloxacin, during and after therapy. This risk is increased in patients over 65 years old, and is further increased with concomitant corticosteroid therapy. Discontinue in patients experiencing pain, inflammation, or tendon rupture.

    Central nervous system effects, including convulsions, confusion, anxiety, depression, and insomnia, may occur after the first dose. As with other quinolones, levofloxacin should be used with caution in patients with known or suspected central nervous system disorders that may predispose them to seizures or lower the seizure threshold.

    Clostridium difficile-associated diarrhea (CDAD) has been reported with the use of nearly all antibacterial agents, including levofloxacin. If diarrhea occurs, evaluate for CDAD and treat appropriately.

    Rare cases of peripheral neuropathy have been reported in patients receiving quinolones, including levofloxacin. Discontinue if symptoms of neuropathy occur to prevent the development of an irreversible condition.

    Some quinolones, including levofloxacin, have been associated with prolongation of the QT interval, infrequent cases of arrhythmia, and rare cases of torsades de pointes. Levofloxacin should be avoided in patients with known risk factors such as prolongation of the QT interval, patients with uncorrected hypokalemia, and patients receiving class IA (quinidine, procainamide), or class III (amiodarone, sotalol) antiarrhythmic agents.

    Safety and efficacy in pregnant women and nursing mothers have not been established. The risk-benefit assessment indicates that levofloxacin is only appropriate in pediatric patients for treatment of inhalational anthrax (post-exposure). The safety in pediatric patients treated for more than 14 days has not been studied.

    Antacids containing magnesium or aluminum, as well as sucralfate, metal cations such as iron, and multivitamin preparations with zinc, or Videx®* (didanosine) chewable/buffered tablets or the pediatric powder for oral solution, should not be taken within 2 hours before or after levofloxacin administration.

    For additional information on Warnings, Precautions, Adverse Reactions, Drug Interactions, and Use in Specific Populations, please see full Prescribing Information.

    * Videx is a registered trademark of Bristol-Myers Squibb Company.



    [This Message was Edited on 08/23/2008]
  8. victoria

    victoria New Member

    My son was rx'd Levaquin for bartonella. The first month he pulsed it and was fine, ie, the herxes were not unusual except for getting way more 'floaters'.

    After a week's break, he started back on it, but did get a weird reaction within 1-2 days - felt that his muscles/tendons were spasming altho it was not visible. Obviously he quit it, no way to know if it was a herx or adverse reaction to the drug.

    He was told to take the entire month of all abx to 'wash out' everything, and of course never tried Levaquin again. But oddly, that month after the levaquin was one of his best - actually THE best - that he had neurocoginitively.

    I do think the levaquin was really killing bartonella, but he reacted to it.

    It reminds me of when I tried Celebrex when if first came out as I had an inoperable painful bone spur... I felt absolutely GREAT after 2 days of it, AND the wonderful feeling lasted for a whole week -

    despite the fact that I had to quit it as I found out if one's allergic to sulfa (I am) to not take it. I had already started feeling a bit weird, which went away quickly after stopping it...

    but continued to have a week long absolutely wonderful holiday from not only the pain from the bone spur, but all my fatigue and everything else!

    (OK I sort of segued into something else, but I've never understood how something that you're 'sensitive' to can start causing a reaction yet end up leaving you feeling really good?!)


    Editing to add:
    we all know that abx of all kinds plus many other drugs hyped by big pharma have their dangers. I don't think many of us WANT to take the chances we have to take sometimes to get better, except for the reason of getting better.

    Others have put it better than I can, but I do liken getting treated for long-term bacterial infections to getting chemotherapy/radiation for cancer, just because there's no better studied protocol (or at least that's what we're led to believe in most cases at least) to get well.



    [This Message was Edited on 08/23/2008]
  9. cbs1234

    cbs1234 New Member

    Thanks for asking about the gut. I do not have leaky gut or dysbiosis.

    I have been to every type of doc and tried so many treatments that I cannot even remember them all. Electrical stimulation, every supplement known to mankind, light therapy, chiropractic, physical therapy, some hormonal therapy, gluten free diets, candida diets, fasting, juicing diets, etc, etc, etc. None of this helped except for frequent massage and icing the tendons.

    The only thing that has worked in my favor is time. It's been over seven years since I took the levaquin and all of the nervous system problems have cleared, the debilitating fatigue has cleared, the brain fog has cleared, and my tendons are about 70% better (still can't do any high impact stuff with the legs).

  10. cbs1234

    cbs1234 New Member

    I was put on levaquin for 42 days for prostatitis. After 28 days, my body was heading downhill fast and my doc and I figured out it was the levaquin.

    I stopped but continued going downhill for quite some time. It's been a long road, but I am doing much better these days.
  11. Catseye

    Catseye Member

    I'm really curious, would you mind saying why you don't think you have any gut issues? Did you have a stool analysis with all the other tests? And have someone capable of interpreting it? I also did all the gut supplements and diet on my own, too, but it wasn't until the stool analysis by the expert that I knew what was happening down there. I had no idea that digestion was as bad as it was. There was no outward signs of indigestion like we are familiar with, just cfs symptoms.

    I had been taking glutamine, probiotics, candida enzymes, betaine hcl (but not enough, I realized later), digestive enzymes and eating lots of veggies for over a year and it was still all messed up. All the expensive probiotics I took, Garden of Life full of lactobacillus, ended up being a sacrifice to the "bad guys" who ate them all. After swallowing $500 worth of lactobacillus (among some others), my stool analysis showed zero lactobacillus. I had sacrificed them to the bad guys like dropping virgins in a volcano. Unless you have a test, you really can't know if the guts, which includes digestion and detoxification, are functioning properly.

    best wishes

    karen
    [This Message was Edited on 08/23/2008]
  12. cbs1234

    cbs1234 New Member

    I did several stool analyses through several different labs. I also had an endoscopy and a colonoscopy where they took small samples of my colon and small intestine and did biopsies and tested for microbes.

    I also tried several different detoxes with a couple of alternative docs to no avail.[This Message was Edited on 08/23/2008]
  13. Catseye

    Catseye Member

    Sounds like you had that totally covered! One question, though, did you have a medical doctor do it or someone who could interpret results and recommend supplements? meaning the stool analysis

    thanks for the reply,

    good luck to you

    karen
    [This Message was Edited on 08/23/2008]
    [This Message was Edited on 08/23/2008]
  14. cbs1234

    cbs1234 New Member

    I went to a med doctor once and then to an intergrative medicine place with an MD, nutritionist, allergist, etc.
  15. Catseye

    Catseye Member

    I hope you covered it, then. I wasted a year and a half with a digestive disease specialist when I first got sick. He ended up recommending a psychiatrist when he couldn't figure out what was wrong. I did end up at the integrative place in town, but they were in the dark about a lot of things, too. If you have a chance, at least read through my first post on the stool analysis thread and see if they addressed the same issues that my guy did. I asked this doc once how many CFSers he has treated and he said hundreds. And then I asked him how many had normal stool analysis results and he said none. That was after I was already convinced that the gut is a key factor in our symptoms. I had gotten that from beatcfsandfms.org

    good luck

    karen
  16. deliarose

    deliarose New Member

    Rich Van K had a very interesting post on the CFSFMexperimental list in which he hypothesised that the damage to tendons inflicted by this class of abx could be linked to glutathione.

    I just mention that in case supplementing with glutathione or testing glut levels could help.

    Sorry for your horrific experience. Thanks for sharing your story.

    A lot of folks on here have warned of the dangers of these flouroquinones (sp?) on this board. Scared the bejesus out of me......

    D.