Can ANY ONE On Earth Help Me?

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Sep 4, 2006.

  1. joeb7th

    joeb7th New Member

    Several months ago I posted on this site after my body and life were ravaged by " something."

    Starting around Dec. 12th, 2005 I was stricken...and to this day I am no better.

    This all started after I went to our local hospital for a flu and fainting on Dec. 10th, 2005. While at the ER I was given Levaquin for beginning bronchitis and given a weeks dose of "levaquin" antibiotics to take home which I took. Within 18 hours of leaving the hospital however, I was back at the ER by ambulance telling them I felt like I was dying from stomach pain, body pain, unprecedented body weakness, difficulty breathing etc.

    I went to the ER 3 or 4 times that 1st week!

    They did their tests, sedated me with Lorazapam for panic each time and would say they couldn't fine anything. Never mentioned anything when I told them I was taking the Levaquin they gave to me. Never said I should stop taking this...nothing.

    I also never asked about it other than to tell them I was taking this as they would always ask what I was taking.

    So I just felt like I was dying for the next 3 or 4 months.

    They started sending in the psych ward people after my 4th visit. Out of embarrassment I stopped going to the ER even though I felt like I was dying. I started taking valium in the worst attacks and eventually ( withing 12 to 24 hours ) the worst attacks would subside to where I felt like I would make it to the next day.


    In the first two months I lost 35 lbs. I simply could not eat. Completely lost my appetite and even had a metallic taste in my mouth. Also, my stomach would go into such pain after I ate that this prevented me from eating also.

    I was in such pain and body failure and misfunction I thought many times I would die.

    I went to my hospital 6 or 7 times this whole time and except for a 3 and a 1/2 second pause in my heart monitoring and fainting in the hospital and quite a bit of damage to my middle intestines ( illeum etc. ) , torn rotator cuff, fractured vertebrae anterior L-1 ( which no one can explain how this happened ) they haven't found too much else. Oh, brady-cardia for several weeks.

    I have lost my job, my family and I are in horrible debt ( $50,000 )and the future looks impossibly bleak.

    I can no longer afford "co-pays" so I quit asking doctors to keep testing me and most doctors have given up on me anyway.

    When I describe all the things I feel...there is not one person that takes me seriously. Even my wife has lost faith in what I describe to her. She is now echoing what my doctors are saying...that the tests aren't showing enough and what I describe seems too confusing, vague and all too encompassing to be real.

    Of course my intestinal tract seems ravaged all the time. It seems " gripped" and is sore and just seems haywire. I have gas constantly ( very foul ) and my stools are the same. I get nauseous frequently although I don't throw up.

    But all of my insides feel this way. When I breath, my insides feel bone dry and I can feel my breath going through my chest as I breath...very cool and dry. I get these " jumps" in my heart about 10 times a day and when I do it stops me...just stops me... I gasp and my whole body just drops in energy.

    And this body dropping feeling I get all the time day and night. All my strength leaves me and I feel so unsure of everything in my body.There is of course panic...but the panic always happens after everything drops..crashes.
    So the panic isn't triggering the body crashing...it's the other way around.

    But everything is haywire. My appetite is there and then gone. I can eat and sometimes eat a lot...but other times I feel too sick.

    My bladder is weird. I feel kind of like I have to pee all the time to varying degrees. My penis feels this pressure. It's slight but noticeable most of the time but when I really have to go it almost hurts. And my flow is much weaker than before. ( I had a lower CT scan. Mildly enlarged prostrate, two small cysts on one kydney, mild diverticulosis.) Had scopes in upper lower intestines and barium X-Ray. Gastritis mild but occassionaly inflamed. Again, dmage to middle intestines though. Enough that they thought it might be beggining Crohns disease. I never had anything close to these middle intestinal symptoms before I got sick.

    I had an attack of having to go to the bathroom ( number 2 ) a couple of weeks ago while I was driving. I thought I could make it home in the 5 miles I had to drive. For the first time in my 54 years...I actually you know what? I still can't believe this happened.

    Sometimes my testicles hurt.

    My eye sight is much worse since all this started.

    I hear popping noises in my ears ( like going up a steep mountain ) from time to time and it really pops....non-stop, very quick succession for several minutes.

    I get popping twitches in my shoulders frequently...same thing ...many over several minutes.

    I have constant pain, soreness and weakness in my legs, arms and shoulders, especially in my shoulders, elbows, wrists, knees and ankles. This ebbs and flows but is always there. Sometimes it's excrutiating.

    I am constantly weak and lethargic.

    I get kind of a "sunburn" type feeling in my face and nexck sometimes.

    I am extremely unsteady on my feet and in the bad times I can barely walk. I feel like I am going to fall over. My wife said I was walking like an advanced "Aids" patient the other day. Then, later on I may feel better and feel more stable. Just crazy.

    I have gained back the weight I lost over the last 9 months and then some. Heavier than I have ever been now.

    I had several doctors tell me they believed all this was due to psychological problems in the beginning months as they weren't finding anything ( nobody ever looked at my Levaquin taking or considered this at all. )

    Several suggested I see a psychiatrist for the first time in my 54 years. Opened minded, I did this and actually went on anti-depressants for the first time in my life also ( 3 or 4 months into this ) These made me feel weird and after about 1 and 1/2 months on these my weight exploded. I quit taking them a few months after I started becuase they didn't affect my physical symptoms at all and I also couldn't sleep with them. It's been over 2 months since I quit. I am sleeping better, my sex drive is "slightly" back, yet my weight is still record level and I still have all these physical symptoms. I am continuing to see a psycho-therapist as this whole scary, depressing, and never improving experience has definitely rocked my world, confidence and emotional state.

    I am open to admitting that I need emotional help through this. But even the co-pay for this is further straining to the worst financial crisis of my family and my life.

    I titled this post the way I did because I feel that there is no one out there that can help me anymore. I tell my wife...if I won the lotto I would fly to the Mayo Clinic and park myself in their lobby until they took me as a patient. I feel that only the best minds in the country can tell me what is wrong with me...but all that takes money. And this will never happen.

    Believe me...I have checked so many web-sites, called so many doctors who never return your calls or say they can't help me.

    I just look up at the sky sometimes and wonder. I ask myself this question " is there anybody on Earth that can find out what is wrong with me?" over and over.

    I know there are people worse off than me. I know there are children who are dying and suffering and I feel horrible about this. I pray for them as I always have. My heart just aches for them.

    Of course I keep what's happened to me in perspective...but sometimes doing this to feel guilty to keep my selfish interest in check just caves in. I am in pain, I fell like I am crippled and sometimes dying.

    Don't I have a right to care about me also? But with a combination of no money, doctors that are telling me there is nothing more they can do and they feel it "must" be psychological ( I had an incredibly social job as a concierge in a hotel before this ) you just sit and wonder...about everything.

    Man, I wish I could just go to the Mayo Clinic...and say...test me for everything...look at everything again...thanks for reading.
  2. glenda2

    glenda2 New Member

    i am sorry you feel so bad i am right there with you. i can't fix ya but i can say a prayer for ya.
    i am at the point that i am going to have to quit my 3 days a week at work but i don't know where i am going to get the money to eat. hope you get the answers you are looking for. take care
    glenda
  3. myalgiamania

    myalgiamania New Member

    sorry you're so sick. i don't have any answers but i do wonder if you had a severe allergic reaction to that medicine. If you go to google search and look for info on that prescription you will see all of the side affects. hospitals don't want to admit mistakes or problems because they are so worried about malpractice. my friend gave me a paxell and i had to call 911. i couldn't get off of the couch and i felt like i was having contractions...weird or what? luckily it went away after a few hours. who know if it caused any serious damage. all of these chemicals we put into our bodies...it's unreal. if i can ever afford it i am going to try some natural products. maybe you could find something on the internet about severe allergic reactions. God Bless.
  4. Adl123

    Adl123 New Member

    I'm so sorry yo are so bad off, right now.

    I couldn't read all of your post, but I did read some, and it sounded as if Aloe Vera juice might help. It has really helped all of my intestinal problems. It'a amazng ou healing it is, to the whole body.

    If it is not contraindicated, you might try it. I get mine from either Walgreens, Walmart or Kmart. All three places carry the same, excellent brand. It comes in a one gallon container, and here it costs $10.00. I mix mine with juice, and in the eginning I drank one cup a day..

    Good luck,

    Terry
  5. kjfms

    kjfms Member

    I have read many of you posts and I am sorry you are having such a rough time. I did a quick search and found a site which my have some way of helping you.

    Here is some of the home page:

    Victim of a Quinolone Antibiotic?

    Have you taken a quinolone antibiotic e.g. Cipro, Floxin, Levaquin etc. and found yourself with some or all of the following symptoms:

    joint pains
    muscle aches
    tendon pain
    burning and tingling sensations
    feeling of pressure in ears
    foggy brain
    an awareness of feeling your heart beat
    vision problems
    anxiety
    insomnia

    You are not alone! Many others have experienced similar long term problems as a result of being prescribed these drugs.

    Maybe you can find something that will help.

    Best of luck and I hope you feel better soon,

    Karen :)


  6. lenasvn

    lenasvn New Member

    I found this info on [website address removed as per rules]
    Injured By Levaquin?
    Levaquin (Generic: Levofloxacin) has been linked to Peripheral Neuropathy, a disorder that causes damage to the peripheral neverous system. Levaquin additionally has been linked to tendon ruptures. Levaquin is in the same group of antibiotics as Cipro. The most common ruptures associated with Levaquin usage are those to the Achilles and the shoulder.

    Levaquin is a member of the quinolone family of antibiotics and is prescribed to treat bacterial infections affecting the lungs, urinary tract and skin. Levaquin is available by prescription only and is manufactured by Ortho-McNeil Pharmaceuticals. Levaquin was approved by the U.S. Food and Drug Administration (FDA) in 1996.

    Additional side effects of Levaquin include: abdominal or stomach pain, headache, diarrhea, dizziness, drowsiness, change in sense of taste, severe joint and muscle pain, constipation, insomnia and anxiety. Other side effects include upset stomach, restlessness, diarrhea, headache and vomiting.

    If you or a loved one took Levaquin and suffered side effects, please fill out the form at the right for a free lawsuit case evaluation by a qualified drug side effects attorney.

    It is possible that you suffer from this. Let us know what you think.

    On a side note: it is very hard to rid any weight gain caused by SSRI's. I was 127-30 pounds until I took this med. I gained 30 pounds and have not been able to shake it off. It is apparent that the metabolism have changed nature, I read somewhere that the metabolism goes-and stays at this new level from SSRI's.

    Darn it, I saved my 7-8 size jeans for 2 years, I guess it's time to let go of'em,,,
  7. lenasvn

    lenasvn New Member

    Here is more about Levaquin. Wether or not this drug is the cause, at the time you went to the ER with the symptoms you desribe, the doctors should have reacted according to the following from http://consumer.pdr.net/drug_info/rxdrugprofiles/drugs/lev1222.shtml:

    Levaquin side effects


    Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe for you to continue taking Levaquin.


    Side effects may include:
    Headache, nausea, constipation, diarrhea, difficulty sleeping

    Less common or rare side effects may include:
    Abdominal pain, abnormal dreams, abnormal or double vision, aggressiveness, agitation, anemia, angina, anxiety, asthma, back pain, blood abnormalities, blood clots, changeable emotions, chest pain, circulatory failure, colitis, coma, confusion, depression, difficulty in or obstructed breathing, difficulty concentrating, disorientation, dizziness, emotional or mental problems, exaggerated sense of well-being, fainting, fungal infection, gangrene or other infections, gas, genital infection and itching, hallucination, heart attack, heart failure, heartbeat irregularities, high or low blood pressure, high or low blood sugar, hives, impaired thinking, indigestion, intestinal bleeding, intestinal inflammation or blockage, irregular heartbeat, itching, kidney disorders, lack of muscle coordination, liver disorders, lung problems or inflammation, muscle pain weakness, pancreatitis, paralysis, pneumonia, rapid or slow heartbeat, rash, seizures, swelling of face or extremities, swollen tongue, tendon inflammation, tumor, vaginal inflammation, vertigo, vomiting, yellowing of eyes and skin
    This side effects list is not complete. If you have any questions about side effects you should consult your doctor. Report any new or continuing symptoms to your doctor right away.
  8. sascha

    sascha Member

    levaquin.
    i'm wondering, also, if you might get any help from Jordan Rubin's ideas and books. His first book was "Patient Heal Thyself." He was diagnosed with severe case of Crohn's Disease, and through persistence and constant searching, found his way out of it. he documents his experience in his book. His second book (i think) is "The Maker's Diet" in which he presents his dietary ideas for optimum health, and for healing purposes. he was very very sick- almost died, but made his way back. maybe some of his knowledge could be applied in your case.

    you are going through a terrible ordeal. when i first came down with CFIDS, it wasn't diagnosed for a while, and my regular doctor couldn't find anything wrong with me. an alternative medical practice did the kinds of testing that brought to light lots of things that were wrong.

    i am currently doing pretty much ok for periods of time when i stay on track with taking care of myself. you will find your way. it does get so hard at times, but persist and report back on your progress.

    Very best of luck to you- Sascha
  9. puffy1

    puffy1 New Member

    I could not read all your post either but it sounds like something our hospital would do do you live in northern cal??

    I took my daughter to our emergency room once she was back there for 2 hours and they did nothing then sent her home with food posining I knew this was wrong so I took her to our GP and she sent to the hospital for emergency galbaldder surgery.

    As for aloe vera I tried that a long time ago but couln't get it down it tasted so nasty to me never tried it again I even put it Orang juice and still could not drink it.

    I would look up the sdie affects of that drug and see what it says for allergic reactions and then take it to the hospital and give them heck. If thats what it was.
  10. RicksChic

    RicksChic New Member

    I know you must be thankful for those that took the time to find the info on Levaquin and write it out for you.

    The first thing I would do, is get a copy of the records from the ER of all those visits while you were taking the Levaquin. Whenever you visit the ER they HAVE to ask and document what medications you are taking. And since you told them you had recently started Levaquin and they didn't question it's possible relation to your symptoms, that makes them liable. You DO have a right to your records. You just need the dates. You don't have to tell them why you need them, but if they ask, just say something like your going to a new Doctor that wants to see if the symptoms that sent you to the ER have any relavence to what's happening to you now.

    Then, definately fill out the forms, etc., that the other posts suggested to, not only sue for compensation, but then file for disability. After you file twice on your own, then you hire a lawyer specializing in disability, and he will do all the work...all the research, letters to Doctors to write letters on your behalf, etc. I can't imagine that you would be denied.

    Pray that God direct your path,

    Kim
  11. painintheeverywhere

    painintheeverywhere New Member

    We all have been there and understand the doctors and crazy looks and psych evals, but in the end...documentation from the medical professionals is what gets us diagnosed with FMs or CFS. Make your Doctor listen to you - send you to specialist i.e. Neurologist, Sleep Studies, Cardiologists etc... until you finally get to see a Rheumatologist. I had many of the same issues you had - I will list for you to compare. I doubted the Levaquin thing until I saw others answer your message. I too have taken it - but I am going to stick w/ my diagnosis for now as it took so long to get it. Hope this helps.

    Your all in my prayers!

    Jane

    Compare Symptoms Meds Fibromyalgia 09/03/06 12:00 PM

    I think it would be interesting and beneficial info if we compare symptoms to see if other problems occur with FM. I would appreciate your info

    Thanks!
    Jane

    Fibromyalgia:
    Symptoms - Joint pain, soft tissue pain, bone pain, muscle spasms, peripheral neropathy, dizziness, syncopy (fainting}, extreme fatigue, brain fog, sleep apnea, metabolic syndrome, slow healing on cuts and wounds, constant headaches, frequent nausea, IBS, Obesity, significant decreased vision and dry eyes, deep foot/ankle pain & stiffiness(especially AM), Depression(Is it any wonder?).

    Meds: Tramadol 100mg 3xday, skelaxin 800mg 3xday, Advil 800mg PRN (I believe my pain could be better controlled)

    Sleep Apnea:
    Med Equip: CPAP, benadryl 50mg to sleep

    Metabolic Syndrome:
    Meds: Citracal+D 250mg 3xday, MVI

    Hypothyroidism:
    Meds: Levothyroxin 125mcg

    Hypertension:
    Meds: Lisinopril 20mg, HCTZ 25mg

    High Cholesterol:
    Meds: Lipitor 40mg

    Neuropathy: Severe burning, tingling & numbness hands,arms
    Meds: Lyrica 100mg 3xday (not as effective as in begining)

    Depression:
    Meds: Effexor 300mg


  12. alaska3355

    alaska3355 New Member

    My son has CFIDS but he is a lot better than he was a year ago. Why? I think partly because his doc suggested that he had mercury poisoning. He had all of his fillings replaced with white ones and he has slowly gotten better. Part of it could be his age...only 19...and the body's ability to heal itself. But I can't help thinking that you said you had a metallic taste in your mouth, that maybe you have some mercury poisoning. Let me know if you want more info. Terri
  13. boltchik

    boltchik New Member

    Joe, I agree with the people in this post who suggest getting a lawyer. I also agree with requesting all of your medical records, but don't let them know why you are requesting them, except maybe to find a new doc. That was a good suggestion. Once you get a lawyer involved, I bet it will get their attention and someone will start helping you.

    Your post made me so upset for you. I hope you get some help. It is so nice that so many are here to support you, you are in my prayers. Get a lawyer, whom only gets a settlement after you win, and get some positive action for yourself! Kim
  14. shelbo

    shelbo New Member

    I am no doctor but could it be that you had a severe allergic reaction to that medication that you took and it has thrown your body out of whack? Are you reactive to other things now too...maybe your are (without making the connection) and that is why you can feel awful and then a bit better later on?

    Why don't you try to keep a diary of all that you eat drink and chemicals you come into conatact with...and monitor your body's response...?

    And if at all possible, eat a diet free of chemicals....at least cut back on sugar and try not to eat processed, pre-packaged food..simplify and see if anything improves.

    Try to get hold of some information on that medication you took to see if such a reaction as yours has occured to some one else before who has taken this medication...even if only one person has a bad reaction that have to list that as a possible side-effect. I would go back to your hospital and complain that all of these symptoms seem to have started only since you began the medication they prescribed. I know you have not got any money but maybe you could put pressure on them to see if they can take some blood and check for toxicity...

    It could be that there is no link between the symptoms and the medication, though - you had gone to the hospital before they gave you the meds with symptoms hadn't you...maybe that was the start of some awful virus that has badly affected your body..

    I know it must be hard for your wife but I think it'd help if you cold sit her down and tell her how important it is to you that she at least believes you - I think progress would be easier with support. It's very hard when someone you are clsoe to doesn't understand as much as they should..

    I will pray hard for you ...that you get a break and find some help...keep on asking God to provide and put your trust in him. Let us know how you do...

    God bless, shelbo
  15. tandy

    tandy New Member


    I agree with 2 of thee above's suggestions,...
    Lawyer,..and read Rubins book Patients Heal Thyself.
    There are really good supplements mentioned that could be of help to you.
    I'd start with a good probiotic.

    Wishing you loads of luck at regaining your health,

    Tandy :)
  16. jake123

    jake123 New Member

    Everyone on this board has been in a desperate position with pain or something so you are in the right place. I told my psychiatrist that "There is no doctor out there who is willing to help me with pain and I thought that was part of a doctor's job". He then said he would give me a prescription for 20 Vicodin every month.
    I just love him. He is about 78 years old and is a very pragmatic person. My PCP dissed him and I stuck up for him. I said "he is the only doctor who has ever really and truly helped me, the only one who has ever listened to me."
    My PCP commented rudely on my taking two pills together and I said my psychiatrist was a brain chemistry genius and that he taught at Southwestern Medical School of Dallas.
    Joe, you just have to find the right fit of a doctor for you. County hospitals often have specialists in every field on staff and they won't charge you if you have no money. Take care.
  17. rockgor

    rockgor Well-Known Member

    Hi Joe

    I'm sorry to hear about all the terrible health problems you are having. It is so discouraging when you see doctors and pay and pay and still get no results.

    I home some of the ideas from other posters will help you.

    Good luck.
  18. jenn5

    jenn5 New Member

    I agree that the antibiotics messed you up. Something I wonder though, since it did such a number on your digestive system, you likely have developed major food intolerances. If you avoid certain foods, that may provide some symptomatic relief.

    Beyond that, I think you really need to see a good alternative physician. A good one will agree with you that levaquin has caused your illness, and will try to build your body back up. Alternative treatments will try to get around the damage done to your body, soothe it's malfunctions, and try to get it back to functioning mode, each part of it.

    Conventional healthcare hasn't helped you; maybe it's time to try the alternative. Have you considered it?

    I truly hope you find answers and healing.

    Jenn
  19. kjfms

    kjfms Member

    for Joe wonder if you checked into anything that was suggested.

    Take care of you,

    Karen :)
  20. minkanyrose

    minkanyrose New Member

    are a good fix till you can get to a doctor I was told by our ER ataff they can only treat the symtoms you have you have to see a doctor to get to the root. sounds like you need a good understanding doctor.