Those new meds KICKED it....If Ya'll are interested

Discussion in 'Fibromyalgia Main Forum' started by 1maqt, Jan 18, 2003.

  1. 1maqt

    1maqt New Member

    This is the third time my meds have been screwed up in the bast two weeks. Mad wolf is right, it is the ABX, and I am proof.I go off, I get sick, I go on I get better. What more proof is there. Except this, if the ABX work they will, and if they don't you will know, becaause thet is no differeence. zaayou may need to look into the viral asspect ;of this DD

    In the past few weeks my meds have been interupted several times. Each time it only takes 3-4days for me to go into a flare. None of the medications work without the three
    together. Then just one day, and I am up and about. So I have expierienced being off, and strting 3times, and everytime I went back on the meds I felt better

    When the insurance wouldn't fill the RX unless I mail ordered it, I panicked and I ffelt they were going way out of their way to mess it up.

    Well my kind husband went and paid $49.60 for #14 pills, and we can get them through the mail for #90 FOR $70.


    The good news is that every time I had to go off the ..meds, and when I continued to take them again, I got better within a day.I'm still a little leary. but I think Madwolf is right, ABX. the other meds I take are neurontin, and ambien.Went with out them 4 nights, took them last night at bedtime, slep through the night, felt rested in the AM. I had severe sleep depravation by fri.Sleeping the one night maade all the difference.

    Maybe all of this is boring, but I am sharing for anyone who would feel something that I am doing could help them. I know we are all different, Let me know if there is anything I can do.

    Clarification!! Do I think I could have a big flare. probaabbly, but I will take what I can get. ONe month ago I was in bed most of the time.....Thanks everyone who's bben praying
    1maqt


    [This Message was Edited on 01/19/2003]
  2. Shirl

    Shirl New Member

    So glad to hear you are doing well again. It is strange how each of us need different meds/supplements to help. Its sad that we can't all take the same thing for the same results! But, thats not the way of this 'beast'is it seems.

    I am glad you now have your meds, and you have a sweet husband, just like mine!

    Take care, and keep posting, we are always helping someone, and there are times we don't even know it.

    Have a goodnight.

    Shalom, Shirl
  3. ozgran

    ozgran New Member

    Just responding to your post. So glad your new meds have helped. I am interested in anything anybody finds out, but I have to ask what is ABX. As I have said before I am having fun learning your American terminolgy and trying to research your meds. Many of our meds have different names etc. Anyway as I have already said I am pleased for you. ((((((Hugs))))))) Ozgran.
  4. 1maqt

    1maqt New Member

    First ABX is antibiiotics, and then, I have had FMS for 28 yrs. In those @* yrs I haave attempted to continue to raise....by the grace of God, 6 children... We sent them all toprivaate schools, and they have turned out to be rather wonderful people.

    For the past 44-5 yrs I have been near, or bedridden. Inactivity is not my nature so it was especially hard to keep fron depression, which i did not always do. It hung on like a life sucking leech, and with having no energy, I felt my life was over, in the sense of doing anything.

    The pain was so unbearable I would lay and cry. I would pray, and beg and wish God to take me home.The last years have been aalmost completely like that.

    I found this site, and read the material available here, and did athourogh research using the Library section, and the links I found there. I feel that God had mercy and helped me find what would work for me.

    I will list my meds as they were taken , and continue at another time, I have to leave for church. Thank you good friends for answering my post. I also have dyslexia as a result of the FMS, and was diaagnosed on Wednesdday with Lupus. Now I have to find out what I can there...1maqt

  5. craftycats6

    craftycats6 New Member

    JUST wanyed to say Congratulations on finding something that helps.THANKS FOR SHARING.


    CRAFTY
  6. Mikie

    Mikie Moderator

    First, I'm glad your meds are helping; good for you!

    I am a firm believer that all our treatments work synergistically together. Find one good treatment to alleviate a symptom and then find another one to alleviate another symptom. Pretty soon, the meds seem to work cooperatively to produce improvement that is beyond what one would expect from each med by itself. This has held true for me.

    Jelly has been the real warrior for not only using antibiotics but for spreading the word about why they work. The word is out and many are taking an interest.

    Love, Mikie
  7. 1maqt

    1maqt New Member

    Someone help me edit, I can not type fast, it comes out badly>>>

    I have had FMS for 28 yrs, not @*. The past 4-5 years not 44-5. I am not trying to be confusing, my dots do not connect sometimes...Fms and Lupus ahve given me some neurological problems.

    There are a lot of unfinished prescriptions in my cupboard.
    I have been seaching for something to help for so long that I just figured when I saw a Rheum. 5 years ago and he handed me a bottle of Soma, it was the end. I come from an era where Dr.s were next to God, and they just knew everything.(Either that, or I lived under a rock too long.)

    As I read the material and reports, and research, the information that is available here, a light went on!
    I read and compared the facts that were agreed upon with each doctor, on several medical sites.

    I kept a journal, and at the end, I did the medicines the same way by comparing the common grounds of each. What worked generally for the most people. That is where this board comes in handy, the sharing of information and meds.

    It is imparitive that you know your body, and your symtoms.
    Read what each medication does primarily, and pray.
    I have tried Solom Shirl's baths, and they help tremendiously.Great!!
    2 cups epsom salts, 16 oz peroxidein a hot bath, 20 minutes and go to bed.

    The Neuronton, 300mg, for two weeks , then 300mg AM/PM. Then see if you need to go for more, I am taking it slowly.
    to make sure if I have a reaction, I know which medicine is the problem. I have a sleep disorder, and restless legs, that include my back and arms. The Neurontin is primarily for this.

    The Ambien is for stage 4 sleep, which I understand FMer's skip through. For me I know this to be true because I wake up. I wake up feeling rested, something I have not experienced in 20 yrs.I ran out of the Ambien and the insurance gave me a hard time getting it. I was without it for 4 nights, and by the foruth night I was expieriencing sleep deprivation again.That proved to me it worked, and the fact that when I took it that night I woke in the morning rested, ao I have been both on and off the medication in a short time.

    The antibiotics: I chose to take Cipro, because it an antibiotic that I tolerate well. 500mg once a day for 4 weeks. Then I am taking doxycycline for maintainance indeffinately. I believe this to be a viable treatment based on Dr Garth Nicolsons research and comparing the explaination in several medical sites as to just exactly they believe
    FMS to be, from a medical point of view. Even Mayo Clinic recognises FMS as an autoimmune desease. The recomendations of Dr Nicolson were considered along with the advice of my own DR. Either the Antibiotics will work, or they will not, and by that you will know if you need to search for viral infections. If I can help eith any other info. Post me a message!! I am an open book.
    1maqt

  8. pearls

    pearls New Member

    I gave my pain doc two recent Immune Support articles, the one on what we now know about fibromyalgia and the one on why a certain doctor uses antibiodics to treat this DD. He did not give me any hassle, treated me nicely, and took the articles. Who knows? He may learn something. I, for one, am not willing to just trust that he is up to date.

    -Pearl
  9. SandySandy

    SandySandy New Member


    Dear 1maqt,

    I am new to this site and was intrigued with your generous sharing of "what helps". I am going to give Neuronton a try as I'm building a tolerance to Klonopin. I tried antiobitic therapy sometime in 1994 or 95 based on a CFIDS Chronicle article by Dr. Dana Weissman. I take risks and am my own lab rat. I was on a combo of doxycyclene and amoxicllin for about 7 to 9 months and improved greatly. I'm considering giving it another go. I've been researching on my own also and came across this disturbing article and am worried maybe you're getting a bad reaction to Cipro - and in hopes you can reverse it if you are.

    Also, I have high blood pressure and was prescribed a diuretic called ____________ (can't get to it now). I was going thru such extreme cognitive dysfunction that it frightened me. I also found an obscure medical article - and later in the Merck Manual under Drug-Induced Lupus - that the ________________ diuretic of blood pressure medication (and possibily other meds (?)) cause this. The docs don't seem too hip to this. Good news - when you stop the drugs, it clears up in a few months.

    My heartfelt prayers in finding your way back to happiness and health and know that you are cared about even by "strangers".

    Sandy
    ___________________________________________

    Peripheral Neuropathy Associated With Cipro

    NEW YORK (MedscapeWire) Nov 2, 2001 — Adverse effects associated with the use of ciprofloxacin (Cipro) and other fluoroquinolone antibiotics are not always benign. Not infrequently, they can be severe and permanently disabling, and they may occur following just one or a few doses, according to a study posted on the Annals of Pharmacotherapy Web site. Scheduled for publication in December 2001, this article was released early online because of the threat of anthrax and subsequent heightened interest in Cipro.
    Jay S. Cohen, MD, an associate professor of family and preventive medicine at the University of California, San Diego, analyzed 45 cases in which fluoroquinolone antibiotics (including 11 cases involving ciprofloxacin) were associated with adverse effects involving the peripheral nervous system such as tingling, numbness, burning pain, twitching, or spasms. Of those 45 cases, 42 (93%) of these patients also sustained adverse effects involving other systems. Seventy-eight percent experienced central nervous system (CNS) symptoms such as dizziness, agitation, impaired cognitive function, or hallucinations, and 73% reported musculoskeletal symptoms such as joint or muscle pain or tendon rupture. Adverse events also involved the cardiovascular and gastrointestinal systems, skin, and special senses in 18%-42% of cases.

    Assessments of severity revealed 2 cases that were mild (4%), 7 moderate (16%), and 36 severe (80%) with chronic pain and/or significantly limited normal function. Symptoms were typically long-term, with 91% exceeding 1 month in duration, 71% exceeding 3 months, and 58% exceeding 1 year. Twelve cases (27%) lasted longer than 2 years. These severe, long-term reactions occurred in a generally young and healthy population. The average patient age was 42 years (range, 11-68 years). Sixty-two percent had no other medical disorder except the infection (mainly sinusitis, prostatitis, urinary infections) that prompted fluoroquinolone therapy.

    Because of the current anthrax threat and the hoarding of ciprofloxacin by thousands of people, it is imperative that physicians and the public understand the benefits and potential risks of using ciprofloxacin or other fluoroquinolone antibiotics indiscriminately. The media have, generally, presented only a few fluoroquinolone adverse effects, which are usually described as mild and brief. There are anecdotal reports of people already taking ciprofloxacin prophylactically.

    The cases presented in this article, as well as previously published articles about the adverse effects of fluoroquinolones, should give physicians pause before using fluoroquinolones unnecessarily, especially because other, safer antibiotics (eg, penicillin, doxycycline) can often be used instead. Moreover, not all serious reactions associated with fluoroquinolones are listed in package inserts or the Physicians' Desk Reference.

    Patients must be informed that with the development of any musculoskeletal, or peripheral or central nervous system symptoms, fluoroquinolone treatment should be discontinued immediately unless medical circumstances (eg, severe infection and no alternative treatment) warrant otherwise. Patients sustaining these reactions should not receive fluoroquinolone antibiotics in the future.



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    [This Message was Edited on 01/19/2003]
    [This Message was Edited on 01/19/2003]