Please tell me where to start...

Discussion in 'Fibromyalgia Main Forum' started by Iggy_RN, Jul 10, 2003.

  1. Iggy_RN

    Iggy_RN New Member

    07/10/03 12:30 AM

    I need some advice on what to go on as far as all the supplements/vitamins. I have had FM for years, but was just dx two months ago. I have mycoplasma pneumonaie infection and I am taking doxycycline, which I have been on for over one month and I feel what this is doing to my system, I am out of whack completely,,, I know I need to replace natural bacteria, and I need stuff to avoid yeast infection if I dont already have it from the side effects of long term ABX. I will order the stuff online here. Thanks, Blessings, Iggy
    ps, I dont know if it would help to know what else I take but here we go:
    neurontin 300mg @ nite
    prozac 20mg
    thyroid 1 grain armor
    Elavil 10mg @ nite
    [This Message was Edited on 07/10/2003]
    (also, my daughter is 7, and I would like to build her immune system, they say these mycos are not contaqious, but I have read in research that it is common for the rest of the family to eventually be infected with it, but they dont know how or why from what I've read. I know my daughter has digestive problems always c/o stomach aches)
    [This Message was Edited on 07/10/2003]

  2. pooped

    pooped New Member

  3. Shirl

    Shirl New Member

    What I take.............................. 03/21/03 01:10 PM
    I take mainly,supplements, herbs, vitamins, etc. The only med I take is Xanax, low dose (0.25 milligrams) at 6pm for racing brain syndrome. It can also be taken with OTC's Advil gel caps, the Xanax enhances the effect of the Advil, and it is a great pain reliever. BUT do keep in mind that Xanax can be very addictive if used consistantly.

    Xanax is an anti anxiety drug, a rather old one. It is addictive, but I only use it once a day, or if I feel an attack coming on.

    I have listed below what I take, hope it is helpful. If you have a question, please feel free to ask me, be glad to help.

    Shalom, Shirl

    Product; Pro Energy: Malic Acid & Magnesium Glycinate
    (I take one before breakfast, and one before lunch)
    This is for energy and pain.

    Product; Ultra B-Complex (High Potency with Folic Acid)
    (1 capsule after or during lunch) This helps with brain fog, and energy too.

    Product; 800IU's of Natural Vitamin E
    (For numbness, heart, blood etc)

    Product; Ester C 500 milligrams
    (antioxidant, helps prevent colds, virus etc.)

    Product; ZMA (zinc, magnesium, Vitamin B-6)
    For sleep, deep sleep also helps with muscle pains.
    (2 capsules at 10pm )

    Product; Jarro-Dophilus (Probotics)
    3 a day for IBS, replaces good bacteria

    Product; Melatonin (5milligrams)
    To help fall asleep, take right before bedtime.

    All the above can be bought from Pro Health, be sure to ask for a free catalog/Newsletter too. If you want to call the number is; 1-800-366-6056 or you can order on-line. Just go to the 'Store' link on the top right of this page for additional information on supplements.

    Product; Essiac Herbal Tea by Resperin Corp.
    This is a blood/liver cleanser. It is also known as a cancer cure/preventive.
    I take two ounces in the morning two ounces at night.
    Can be bought at most health food stores and Supplement catalogs.

    Product; Polynesian Pure Noni Juice
    (I take one teaspoon before breakfast, one before lunch for my IBS, it is a great product). I order it by the case!
    Can be bought in most health food stores, be sure you get the 'pure' juice or it won't work.

    Product; Natural Calm put out by 'Natural Vitality'
    This is a powdered Magnesium Citrate.
    (I take a teaspoon a day for pain, especially spasms . But don't take too much it will give you diarrhea).

    This is about it for the time being, as for a multi vitamin, I have trouble digesting them, so I drink two cans of Ensure a day for the multi.

    Also, I drink half my body weight in ounces of water per day, along with a quarter teaspoon of Sea Salt. This has helped with severe sinus headaches, and it seems to have helped the Fibro Fog too.

    Here is some good advice; I strongly recommend you add ONE thing at a time for at least a week or two, this way if you have a problem with a product/supplement, you know what is causing it. If you try to take too much at once then if you have a problem, you would have to quit everything and start over again.
    I learned this the hard way, so though I would pass on this wise advice!

    It took me years to get the right things that I could take. Wasted a lot of money on eyerything from doctors, prescription meds, and vitamins and herbs too.

    Just remember, we are all different, so some of what I take might not be the right thing for you. It really is trial and error with these illnesses.

    Hope this helps, and if you have any questions, please feel free to ask. I am usually here everyday, but not at a special time.

    PS, always buy the best supplements you can afford, as you really get what you pay for with supplements. Pro Health has some of the best ones I have ever taken, and I am not just promoting them, its the truth. I have taken there products before I ever heard of this board.


    Iggy if you have any questions about the above, just ask me.
    Shalom, Shirl

  4. tansy

    tansy New Member

    I'm concerned about my son too. He was born with an infection then at 14 got very ill. He's made a 90% recovery which means he has a life but he was struggling and still going down with awful infections. He also has A Iga deficiency.

    Well what I learnt from this board has really benefitted him and some of it may help ensure your daughter's health and well being.

    What seems clear is that diet is very important. Magnesium seems to be essential too, Shirl's already covered that. Digestive enzymes are probably the next thing to look at and probiotics too.

    A lot of us find a high protein low carbs diet, more water and sea salt increase energy and lower pain.

    These are good starting points. I agree with Shirl that you both need to start slowly.

    Good luck


  5. PatPalmer

    PatPalmer New Member

    It`s a complete minefield out there, my cupboard is overflowing with supplements that`ll probably never be used up...

    My daughter now 18 was diagnosed with mycoplasma pneumoniae and given 2 weeks on Erythromycin for all the good it did.

    Your daughter may only fall ill if she is under a lot of stress, or suffers severe shock. It`s not automatic she`ll catch it too. Though I am very concerned about her stomach problems.
    Is it stress related or when she eats foods like bread or pasta?

    The best protection for anyone is to dump all processed foods refined sugars and saccharin products.

    Our modern diet is severely deficient in essential enzymes, minerals, Essential fatty acids (Omega 3 & 6) and antidioxants.

    My advice is to eat ONLY what comes naturally, wholemeal bread not white, take good doses of Flaxseed Oil (Omega 3), Probiotics and Digestive Enzymes, 1/4 tsp of pure Sea or Rock Salt and drink herbal teas with antidioxants in daily.

    OLE improved my daughters energy levels, all the different ABX in the past only made matters worse for her. I`d be tempted to dump the ABX and stick with the OLE - it doesn`t kill off the good guys.

    I personally don`t like the overuse of combined drugs dished out by the GPs.
    You are on several which can all have severe side effects. I am thinking it`s these which could be making you so ill too.
    Drugs will further stress a drained immune system - it needs nourishment.

    Neurontin and Elavil are for the same problem, why has he given you both?

    I`m rattling on so hope this helps you some.

    Love Pat.
  6. pearls

    pearls New Member

    Get some books. My favorite include:

    1) "Fibromyalgia and Myofascial Pain, a Survival Manual," Second Edition, Dr. Devin Starlanyl and Mary Ellen Copeland, 2001

    This book is my number one choice. Good information about a lot of things for fibromyalgiacs, including diet. Dr. Starlanyl is a great advocate for the Zone diet books by Barry Sears. Some other topics in the diet chapeter are:
    (a)Cellular Factories and Adenosine Triphosphate
    (b)Food Basics: a Pyramid Scheme?
    (c)Leaky Gut Syndrome
    (d)Food Allergy/Intolerance
    (e)Food Supplements

    Her chapter, "Signs and Symptoms," alone is worth the cost of the book.

    2) "The Fibromyalgia Advocate," Dr. Devin Starlanyl, 1999

    Also a wonderful book, diet here is included within some of the chapters. Among the diet topics are Reactive Hypoglycemia, What your Nutritionist Should Know, Guaifenesion Therapy (Salicylate Blocking Effect),

    But this book also helps you through the minefield of dealing with your doctors, lawyers, SSDI, workers compensation, your friends and family, your own psychological fallout from fibromyalgia, and so forth.

    3) "From Fatigued to Fantastic!" Dr. Jacob Teitelbaum, revised, 2001

    This wonderful - and inexpensive - book deals with many aspects of fibromyalgia, and is essentially Dr. Teitelbaum's medical protocol, and nutrition plays a vital role. He uses both natural and prescription modalities, and likes to treat his patients with many different drugs and nutrients all at the same time, having achieved greater success by using multilateral approaches.

    In the chapter, "First Things First," however, he states that he never ceases to be amazed at how often people improve dramatically "by simply cleaning up their diets a little - cutting down on their sugar, caffeine, and alcohol intake; substituting whole grains for white flour; and adding an excellent multivitamin supplement with magnesium to their daily regimens." He elaborates on these simple things over 10 pages. There is considerably more nutritional information throughout the book.

    4) "The Trigger Point Therapy Workbook," Clair Davies, N.C.T.M.B., 2001

    I had to throw this one in! This is not a nutrition book, but we have discussed this book quite a bit on this board lately. In this book, Clair Davies explains in easy-to-read terms the pioneering work of Drs. Janet Travell and David G. Simons in trigger point pain relief. I ordered my copy because of a recommendation in one of Dr. Starlanyl's books. Everyone who experiences pain in specific areas should own this book.

    The authors of the first three books have web sites and you really should check them out. Both Dr. Starlanyl and Dr. Teitelbaum have fibromyalgia themselves, and Mr. Davies cured his own chronic shoulder pain using methods perfected by Drs. Travell and Simons before he was trained as a massage therapist at the age of 60!

  7. Iggy_RN

    Iggy_RN New Member

    thanks for all the info and advice. Iwill start probably with the b complex and probiotics. then like Shirl said, start gradually introducing all of the other supplements in. I went off the elavil, which i will try to do permanently, but who knows. for my girl I will do the esens greens and the chewable vitamins with the probiotics. and I am going to clean my cupboard of refined sugars and flours and such products,(just as soon as I finish my Pepsi!)And I am going to the store now to get some books!!!!!! thanks a million. I dont know what I would do w/out you guys. blessings, Iggy
    [This Message was Edited on 07/10/2003]