Quick Poll what treatment plan are you on? (or considering)

Discussion in 'Fibromyalgia Main Forum' started by BrainFogBaby, Jun 18, 2008.

  1. BrainFogBaby

    BrainFogBaby New Member

    I'm polling to see who uses what treatment plan, which supplements or medications have been lifesavers, whether you use them under a dr.'s instruction or on your own...the info is for an upcoming women's interest article on treatment plans for ME/CFIDS, but ALL answers are anonymous. So write freely!


    I, personally, am on Enlander's modified methylation protocol, take enzymes to support immune, cardiac and detoxifying functions, Hawthorne to support the heart (a Dr. Cheney suggestion) and take prescriptions as needed for the out of control symptoms (klonopin for insomnia and severe anxiety, amitriptaline for migraine prevention, and mild muscle relaxers whenever severe muscle pain flares up).
  2. Slayadragon

    Slayadragon New Member

    Once I started addressing the mold, I was able to ditch almost everything else. Here's what's left:

    1. Mold Avoidance

    2. Vitamin C IV's (25-50 cc's) and high dose oral Vitamin C (30-40 mg)

    Detoxification of mold poison and other poisons; pathogen killing (I think mostly of lyme)

    3. Methylation Support

    FolaPro, ActiFolate & B12
    Molybdenum and Manganese (for accompanying ammonia and sulfur excesses)

    4. Other Detox Support

    Green Tea Extract (supposed to help to break down mycotoxins)

    5. Hormones

    Estradiol (patches)
    Testosterone (cream)
    CF Support (Adrenal and Mesenchyme Extract)
    Human Growth Hormone (when I feel I can afford it)

    6. Probiotic

    My doctor makes a superpowered formula with 18 strains and 60 billion units. I take up to three. (This is equal to 180 capsules of regular probiotics, but with multiple strains rather than just a couple.)

    7. General Nutrition

    Vitamin B Complex
    Vitamin D (just started)

    8. Biotoxin (lyme/mold poison) Detoxifiers

    Cholestyramine, fish oil (occasional because very strong)

    9. Klonopin (phasing off, now at .5 mg per night) for sleep

    I don't think this is going to be much help for your article, unfortunately. It all comes under the heading of "esoteric" even for CFS specialists.

    I now have two good CFS doctors, and previously had an M.D. who specialized in hormones (and had CFS herself). This whole thing has been crafted in conjunction with them.

    I presume your working on this means that you survived Tony awards night at least vaguely intact???

    I hope so!

    P.S. Oh, okay, for someone who has "CFS" of unknown etiology and without having done lots of trial and error in the past, I'd suggest starting with the following:

    * Adrenal Support
    * Candida Control (no sugar, maybe some herbs, some probiotics maybe in that "Pearls" formula that digests in the intestines if something like my doctor's isn't available)
    * Klonopin and/or Melatonin for Sleep
    * Evaluate all hormones, supplement as needed. Try sustained release T3 (compounded) even if TSH, T4 and T3 levels are normal to see if it's helpful. (Make sure that T3 doesn't get above limit and that symptoms of excess don't appear.)
    * Experiment with food elimination (especially dairy, wheat, corn, citrus, peanuts) to see if any cause problems. Dr. Coca's "The Pulse Test" has an interesting and (I think) useful way to identify which might be problems.
    * Maybe some NADH and/or Coenzyme Q10.
    * Magnesium and/or DLPA for pain/stiffness/depressive-type symptoms.
    * Vitamin B Complex
    * Vitamin C to bowel tolerance
    * Juicing (for enzymes, concentrated nutrition, detoxification)

    [This Message was Edited on 06/18/2008]
  3. BrainFogBaby

    BrainFogBaby New Member

  4. kyra07

    kyra07 New Member

  5. gettingwell

    gettingwell New Member

    Just wondering if Enlander has you on any antivirals or if he recommends any. I seem to remember that he was pushing Valcyte for a while. Does he recommend Valtrex or Amantadine like Levine does?

  6. kyra07

    kyra07 New Member

    Hi! I'm also a Dr E patient, so I decided to jump in... He recommends Valcyte as a treatment option for patients that fit the Montoya protocol. I am resistant to trying Valcyte until more is known about its long term effects. I asked about Valtrex and other antivirals and Valcyte is the only one he recommends. He is resistant to Valtrex, especially if you have severe allergy problems.
  7. gettingwell

    gettingwell New Member

    Why is Dr. E so opposed to Valtrex (if you don't have allergies)? Has he not had success with it?

    Thanks, and good luck to you.
  8. gettingwell

    gettingwell New Member

    So sorry, I got your post confused with someone else's!

    Do you know why Enlander is so opposed to Valtrex (if you do not have allergies)?
  9. spacee

    spacee Member

    I guess I fall in the Dr. Cheney group. I have had this DD so long and he was one (not the only) of the first to be in the CFIDS Journal decades ago. But he doesn't use the Transfer Factors anymore.

    What I can't be without:

    Isoptin 240 sf (regulates racing heart)
    Ultram Brand name, not generic
    High B-12 injections
    Magnesium at night
    NADH in AM
    Transfer Factor #2 and #9 (take both for 1 week, then don't take for 1 week).

    And my latest:
    Magnesium/Sulfate cream

    I take other supplements like calcium, olive leaf, l lysine co-Q 10 but the above is what I can't do a day without.

    [This Message was Edited on 06/19/2008]
  10. brainfoggy

    brainfoggy New Member


    I follow most of Dr. Teitelbaums treatment plan for vitamins, I use his energy drink and recommended minerals/vitamins/aminos. Supplements that have helped the most:
    1.transfer factor
    3.whey protein
    4.maitake mushroom for immune support
    5.Co-enzyme Q10 with Vit E
    7.Methylation Supplements
    8.Coag Clear for hypercoagulation
    9.Vit C
    12. T3 Compounded Thyroid

    Just this week I started zithromax for co-infections and heparin injections to help move the "gunk" as my doc says. I'm hoping these will help! Exploring other culprits besides EBV and Herpes is important and treating co-infections with ABX. Also, doing comprehensive metabolic panel, and stool analysis important. Iodine testing for thyroid function good as well.
  11. kyra07

    kyra07 New Member

    Hi! Dr. E said he hasn't had much success with Valtrex. But I've read some people on this board had some success, which is why I asked him about it: I have hight EBV and HHV1, so I thought it might get at least those under control and then see if I need to treat the high HHV6. :(

    Have a great one!
  12. kking0412

    kking0412 New Member

    Doxycycline (for lyme)
    Lidoderm patches when I can get them

    when money is ok I use mostly Advocare supplements:
    Nighttime Recovery (amino acid and herbal)
    Coreple (multivitamin)
    Catalyst (muscle strenght & support)
    fish oil
    Clear Mood (5htp)
    I also use their protein shakes and the after workout muscle recovery shake on days when I overdo.
    oh, and coke syrup so I do not upchuck the pills (I blame a combo of the doxy and something)
    and thank you for reminding me, Vitamin D and calcium!
    [This Message was Edited on 06/20/2008]