Saw my new fibro doctor today - please read about my appt.

Discussion in 'Fibromyalgia Main Forum' started by BxGirl, Sep 22, 2005.

  1. BxGirl

    BxGirl New Member

    I saw my new Fibro doctor/Psychiatrist today. He jumped right in and is helping me with the fibro. He feels it is much more than just a "pain problem". He says its where your whole nervous system is out of whack. He prescribed Naltrexone for me. I don't know what it is yet, but I have to look it up.

    He also is switching me from Lexapro to Zoloft. I told him I can't stand the 30 lbs. I gained from Lexapro so he is changing my meds. I am going in on Monday for a whole bunch of blood tests and a neck x-ray.

    I like the idea of seeing one doctor who can help me with all of my symptoms, instead of seeing one doctor for this thing and another doctor for another thing. It's more integrated this way.

    He wants me to try a hyperbaric oxygen chamber, but I can't afford it now. Maybe next year. He is really nice and seems to really understand fibromyalgia.

    I asked him if I can stop taking anti-depressants and he said with my history I can't. That's what my last psychiatrist said. Bummer!!!!

    My sleep doctor prescribed Ritalin for me, and he wants me to call him and ask him for Adderal. I've heard good things about Adderal. I hope he'll do it for me.

    I am struggling so much lately. I eat too much and then feel sick. I am going to try very hard not to overeat. Hopefully I'll lose some weight from switching anti-d's.

    I have been feeling so bad lately - both physically and mentally. I keep having different medical challenges - and it's wearing me out. I'm still working full-time and trying very hard to keep going. This whole thing really stinks!

    Please let me know what you think? Do you think I'm on the right track?

    BxGirl
  2. lmmillion

    lmmillion New Member

    I just posted an answer to someone else about seeing a good psychiatrist for help. Having my meds managed by the psychiatrist was the best thing for me. I finally got on the right blend of meds for sleep, depression, and energy, and feel much better than I did when I was first diagnosed. I admire you for still working full-time. I know firsthand how difficult that is. I couldn't keep up and had to leave my job. I think you are on the right track and I hope that you start feeling better soon.
  3. JLH

    JLH New Member

    Hello, BxGirl,

    It sounds as if your new doc is on the right track!

    Maybe the switching of meds will help you begin to feel better, I hope. I know Zoloft is a good med!

    My grandson has ADD and was on Ritilin, but didn't do well on it. He was switched to Adderal and is doing much better.

    Let us know in a week how the new meds are working!

    Take care.

    Hugs,
    Janet
  4. natrlvr2

    natrlvr2 New Member

    have a wonderful rhuematologist but my insurance willnot allwo me to see him anymore. But I do still see my one psychiatrist for my anxiety and she is THE smartest woman.She has helped me with my meds immensely but she is retiring this yr.UGH!
  5. Rosiebud

    Rosiebud New Member

    to have someone who knows what they are talking about.

    I hope your new meds help you.

    love
    Rosie
  6. nanswajo

    nanswajo New Member

    BxGirl:

    That sounds sooo great. If I lived near you I'd go to that doc. What a relief for you. I also feel I would like one doctor who can help me with all of it rather than skipping around.

    Please keep us up to date on how it goes. I also take Lexapro and have gained 30 pounds. I absolutely hate that. I would be interested in how you do when changing to Zoloft.

    Best to you!

    Nancy
  7. fivesue

    fivesue New Member

    I think you have a winner, here, BxGirl. This doctor seems to see that things aren't working and is changing things to see if they will help. Guess you can't ask for more than that!

    I'm so surprised you can work full time; you are an amazing person with all the pain and health issues you have. Maybe these changes will help.

    I'm in the spot you are right now...my depression med is just not working anymore, and I am having serious depression issues...clinical depression is one of my health problems! Other things are going on, but I do have a good psychiatrist and PCP and have appointments soon.

    I hope all of these changes will help you. I won't say Iknow how you feel because I'm not you, but many of the things you have mentioned I fight, also. I hate the weight gain, and yet there seems no way to get off antidepressants. A real bummer, huh?

    I just wish you the best and a smooth transition between meds...sometimes that can be rough. I'm just glad someone is taking you seriously and working to make things better.

    blessings,
    Sue
  8. Bailey-smom

    Bailey-smom New Member

    I love having only one doctor. It just is more personal like they "know" you & your problem & they really care. Congrats - I hope everything goes well!

    Kelly
  9. lovethesun

    lovethesun New Member

    I am so happy that you've found one.It really helps to keep thing under control Linda
  10. PVLady

    PVLady New Member

    (First, if I should not have posted this info, I will delete it) This is interesting about "Low Dose Naltrexone"

    I see on the internet some doctors are prescribing "low doses" of Naltrexone to treat autoimmune diseases, also fibromyalgia (and many other diseases).

    There is a web site lowdosenaltrexsone.org with explanations.

    Apparently they feel taking a low dose boosts the immune system.

    Interesting...

    Below is a list of some of the ailments they are giving this drug in low doses to help. (LDN stands for low dose Naltrexone).

    What diseases has it been useful for and how effective is it?
    > Bernard Bihari, MD has described beneficial effects of LDN on a variety of diseases:
    Cancers: Other Diseases:
    Breast Cancer
    Carcinoid
    Colon & Rectal Cancer
    Glioblastoma
    Liver Cancer
    Lung Cancer (Non-Small Cell)
    Lymphocytic Leukemia
    Lymphoma (Hodgkin's and
    Non-Hodgkin's)
    Malignant Melanoma
    Multiple Myeloma
    Neuroblastoma
    Ovarian Cancer
    Pancreatic Cancer
    Prostate Cancer (untreated)
    Renal Cell Carcinoma
    Throat Cancer
    Uterine Cancer
    ALS (Lou Gehrig's Disease)
    Alzheimer's Disease
    Behcet's Disease
    Celiac Disease
    Chronic Fatigue Syndrome
    Crohn's Disease
    Emphysema (COPD)
    Fibromyalgia
    HIV/AIDS
    Irritable Bowel Syndrome (IBS)
    Multiple Sclerosis (MS)
    Parkinson's Disease
    Pemphigoid
    Primary Lateral Sclerosis (PLS)
    Psoriasis
    Rheumatoid Arthritis
    Sarcoidosis
    Systemic Lupus (SLE)
    Ulcerative Colitis
    Wegener's Granulomatosis


    > LDN has demonstrated efficacy in hundreds of cases.
    Cancer. As of mid-2004, Dr. Bihari reports having treated over 300 patients with cancer that had failed to respond to standard treatments. Of that group, some 50%, after four to six months treatment with LDN, began to demonstrate a halt in cancer growth and, of those, over one-third have shown objective signs of tumor shrinkage.

    Autoimmune disease. Within the group of patients who presented with an autoimmune disease (see above list), none have failed to respond to LDN; all have experienced a halt in progression of their illness. In many patients there was a marked remission in signs and symptoms of the disease. The greatest number of patients within the autoimmune group are people with multiple sclerosis, of whom there are now some 400 in Dr. Bihari's practice. Less than 1% of these patients has ever experienced a fresh attack of MS while they maintained their regular LDN nightly therapy.

    HIV/AIDS. As of September 2003, Dr. Bihari has been treating 350 AIDS patients using LDN in conjunction with accepted AIDS therapies. Over the past 7 years over 85% of these patients showed no detectable levels of the HIV virus — a much higher success rate than most current AIDS treatments, and with no significant side effects. It is also worth noting that many HIV/AIDS patients under Dr. Bihari's care have been living symptom-free for years taking only LDN with no other medications.

    > How is it possible that one medication can impact such a wide range of disorders?
    The disorders listed above all share a particular feature: in all of them, the immune system plays a central role — and low blood levels of endorphins are generally present, playing a role in the disease-associated immune deficiencies.

    Research by others — on neuropeptide receptors expressed by various human tumors — has found opioid receptors in many types of cancer:

    Brain tumors (both astrocytoma and glioblastoma)
    Breast cancer
    Endometrial cancer
    Head and neck squamous cell carcinoma
    Myeloid leukemia
    Lung cancer (both small cell and non-small cell)
    Neuroblastoma and others...
    These findings suggest the possibility for a beneficial LDN effect in a wide variety of common cancers.


    --------------------------------------------------------------------------------

    How can I obtain LDN and what will it cost?
    > LDN can be prescribed by your doctor, and should be prepared by a reliable compounding pharmacy.
    Naltrexone is a prescription drug, so your physician would have to give you a prescription after deciding that LDN appears appropriate for you.

    Naltrexone in the large 50mg size, originally manufactured by DuPont under the brand name ReVia, is now sold by Mallinckrodt as Depade and by Barr Laboratories under the generic name naltrexone.

    LDN prescriptions are now being filled by hundreds of local pharmacies, as well as by some mail-order pharmacies, around the US. Some pharmacists have been grinding up the 50mg tablets of naltrexone to prepare the 4.5mg capsules of LDN; others use naltrexone, purchased as a powder, from a primary manufacturer.

    One of the first pharmacies to do so was Irmat Pharmacy in Manhattan. Their recent price for a one-month's supply of 4.5mg LDN (30 capsules) was $38. Irmat accepts prescriptions from any licensed physician, checks for insurance coverage, and will ship anywhere in the US or to other countries.

    > Pharmacies that are known to be reliable compounders of LDN:
    Irmat Pharmacy, New York, NY (212) 685-0500
    Gideon's Drugs, New York, NY (212) 575-6868
    The Compounder Pharmacy, Aurora, IL (800) 679-4667
    The Medicine Shoppe, Canandaigua, NY (800) 396-9970
    Skip's Pharmacy, Boca Raton, FL (800) 553-7429
    Smith's Pharmacy, Toronto, Canada (800) 361-6624



    > IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form.
    Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

    > IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.
    The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources.


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    What dosage and frequency should my physician prescribe?
    The usual adult dosage is 4.5mg taken once daily at night. Because of the rhythms of the body's production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime.

    People who have multiple sclerosis that has led to muscle spasms are advised to use only 3mg daily and to maintain that dosage.

    Rarely, the naltrexone may need to be purchased as a solution — in distilled water — with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is used in a liquid form, it is important to keep it refrigerated.

    The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night. Dosages below this range are likely to have no effect at all, and dosages above this range are likely to block endorphins for too long a period of time and interfere with its effectiveness.

    > IMPORTANT: Make sure to specify that you do NOT want LDN in a slow-release form (see above).

    --------------------------------------------------------------------------------

    Are there any side effects or cautionary warnings?
    > Side effects:
    LDN has virtually no side effects. Occasionally, during the first week's use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

    > Cautionary warnings:
    Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram, morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one's system. In addition, LDN should probably not be taken during pregnancy.

    Full-dose naltrexone (50mg) carries a cautionary warning against its use in those with liver disease. This warning was placed because of adverse liver effects that were found in experiments involving 300mg daily. The 50mg dose does not apparently produce impairment of liver function nor, of course, do the much smaller 3mg and 4.5mg doses.

    People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications.


    --------------------------------------------------------------------------------

    When will the low-dose use of naltrexone become FDA approved?
    > Although naltrexone itself is an FDA-approved drug, LDN still awaits clinical trials.
    The FDA approved naltrexone at the 50mg dosage in 1984. LDN (in the 3mg or 4.5mg dosage) has not yet been submitted for approval because the prospective clinical trials that are required for FDA approval need to be funded at the cost of many millions of dollars.

    All physicians understand that appropriate off-label use of an already FDA-approved medication such as naltrexone is perfectly ethical and legal. Because naltrexone itself has already passed animal toxicity studies, one could expect that once testing is able to begin, LDN could complete its clinical trials in humans and receive FDA approval for one or more uses within two to four years.


    --------------------------------------------------------------------------------

    What You Can Do
    > Talk to your doctor.
    If you are suffering from HIV/AIDS, cancer, or an autoimmune disease, LDN could help. In AIDS and cancer therapy, LDN is often used in conjunction with other medications.

    Cancer. Anyone with cancer or a pre-cancerous condition should consider LDN. Many use LDN as a preventive treatment. Post-treatment, others have been using LDN to prevent a recurrence of their cancer. LDN has been shown in many cases to work with virtually incurable cancers such as neuroblastoma, multiple myeloma, and pancreatic cancer.

    HIV/AIDS. As an AIDS drug, LDN leads to far fewer side effects than the standard “AIDS cocktail”. When used in conjunction with HAART therapies, LDN can boost T-cell populations, prevent disfiguring lipodystrophy, and lower rates of treatment failure.

    Do not be afraid to approach your doctors — physicians today are increasingly open to learning about new therapies in development. Tell your doctors about this website, or print out and hand them the information, and let them weigh the evidence.

    > Tell others.
    If someone you know has HIV/AIDS, cancer, or an autoimmune disease, LDN could save them from a great deal of suffering. If they use e-mail, send them the address of this website (www.lowdosenaltrexone.org). Or, print out the site and mail them the information.

    > Help spread the word to the media, the medical community, and to developing countries.
    Low-dose naltrexone has the potential to reduce the terrible human loss now taking place throughout the globe. It is a drug that could prevent millions of children from becoming AIDS orphans. It is a drug that could be a powerful ally in the war against cancer.

    If you or someone you know has connections in the media, the medical community, or to those in developing countries involved in AIDS policy or treatment, please let them know about LDN.

    > Raise funds to help run clinical trials.
    If possible, consider contributing to the Foundation for Immunologic Research (FFIR), a 501(c)(3) non-profit organization, founded by Bernard Bihari, MD, in order to help assist the implementation of clinical trials for LDN. The goal is to achieve general scientific acceptance of LDN. This, in turn, should lead to international availability for people everywhere. See the Foundation's website.


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    About This Website
    > This is a not-for-profit website.
    This website is sponsored by Advocates For Therapeutic Immunology. The purpose of this website is to provide information to patients and physicians about important therapeutic breakthroughs in advanced medical immunology. The authors of this site do not profit from the sale of low-dose naltrexone or from website traffic, and are in no way associated with any pharmaceutical manufacturer or pharmacy.

    > Consult your doctor.
    This website is not intended as a substitute for professional medical help or advice. A physician should always be consulted for any medical condition.

    > Contact us.
    For information on how to contact us with questions or comments, click here.

    Please note that no response can be given to individual questions concerning medical symptoms or treatment.


    --------------------------------------------------------------------------------

    Additional Information
    Bernard Bihari, MD, 29 W. 15th Street, New York, NY 10011; (212) 929-4196.
    Click here to see Dr. Bihari's curriculum vitae.
    Ian S. Zagon, Ph.D., Professor of Neuroscience and Anatomy, Pennsylvania State University, Department of Neuroscience and Anatomy, H-109, The M.S. Hershey Medical Center, Hershey, PA 17033; office phone: (717) 531-8650; email: isz1@psu.edu (click here and here for Dr. Zagon's websites).

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    Footnotes
    Roy S, Loh HH. Effects of opioids on the immune system. Neurochem Res 1996;21:1375-1386
    Risdahl JM, Khanna KV, Peterson PK, Molitor TW. Opiates and infection. J Neuroimmunol 1998;83:4-18
    Makman MH. Morphine receptors in immunocytes and neurons. Adv Neuroimmunol 1994;4:69-82

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    [This Message was Edited on 09/23/2005]
  11. hubby

    hubby New Member

    This all sounds so interesting but didn't get very far in thread, will though as want to see the reasoning behind the Naltrexone he prescribed and know what you mean about weight gain. Have fought being put back on anti-depressants, and haven't been able to loose weight finally am on Cipralis, anyone else out there on it. I hope it doesn't put on weight, I am trying not too. I felt it was working some at first and now with many more new things that have me in a emotional upheaval it doesn't seem to be working.

    I will read this thread tommorrow when I might be able to get through it. I am exhausted and hope I can sleep, most of the time I have to get that way to stop my brain from working to get to sleep some for the night.

    have a good night all
    Hubby
  12. BxGirl

    BxGirl New Member

    Thanks for the info on the Naltrexone. I don't know what to do. I haven't started it yet. Right now I'm in the process of switching from Lexapro to Zoloft and I don't want to shock my system too much.

    I haven't taken the Ritalin yet either. I can't believe I have Narcolepsy!!!! That's almost worse than the fibro. It seems like a weird dream to me. Boy, talk about taking one day at a time.

    I woke up this morning and am a bit nauseous. I think I want to talk to the doctor again before I start the Naltrexone. I'm going to call him on Monday.

    Thanks for your support. Here I wanted to decrease the amount of meds I'm taking, but it seems I can't.

    Oh well.

    BxGirl
  13. Adl123

    Adl123 New Member

    It surely sounds like you're on the right track, to me. How fortunate you are to have found such a doctor!

    Keep up the good work. You are very brave. Good luck,

    Hugs,
    Terry