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ME/CFS and Beating the Clock
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Treatment survey

Discussion in 'General Treatment' started by heapsreal, Aug 8, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    LEGEND...
    Pos: percentage of treatment users reporting positive effect
    Neg: percentage of treatment users reporting negative effect
    ISE: percentage of treatment users reporting intolerable side effects
    - : user reporting negative effect, regardless of side effects
    o : user reporting no effect, but with intolerable side effects
    o : user reporting no effect
    + : user reporting positive effect, but with intolerable side effects
    + : user reporting positive effect

    DATA...
    Percocet 92.86% Pos 7.14% Neg 21.43% ISE -+++++++++++++
    Tinidazole (Tindamax) 91.67% Pos 0.00% Neg 0.00% ISE o+++++++++++
    Cytomel 90.00% Pos 10.00% Neg 0.00% ISE -+++++++++
    Oxycodone (Oxycontin) 88.89% Pos 11.11% Neg 33.33% ISE -++++++++
    Clonazepam (Klonopin, Rivotril) 88.57% Pos 5.71% Neg 2.86% ISE --oo+++++++++++++++++++++++++++++++
    Human Growth Hormone 87.50% Pos 12.50% Neg 0.00% ISE -+++++++
    Topiramate (Topamax) 87.50% Pos 12.50% Neg 0.00% ISE -+++++++
    Lorazapam (Ativan) 87.50% Pos 0.00% Neg 18.75% ISE oo++++++++++++++
    Ketaconazole (Nizoral) 87.50% Pos 0.00% Neg 0.00% ISE o+++++++
    Olmesartan (Benicar) 85.71% Pos 14.29% Neg 14.29% ISE -++++++
    GcMAF 83.33% Pos 16.67% Neg 0.00% ISE -+++++
    Nexavir 80.00% Pos 0.00% Neg 0.00% ISE oo++++++++
    Hydrocodone-Acetaminophen (Vicodi 78.26% Pos 13.04% Neg 17.39% ISE ---oo++++++++++++++++++
    Intravenous saline 76.00% Pos 4.00% Neg 0.00% ISE -ooooo+++++++++++++++++++
    Baclofen 75.00% Pos 6.25% Neg 12.50% ISE -ooo++++++++++++
    Medical marijuana 72.22% Pos 33.33% Neg 11.11% ISE ------+++++++++++++
    Alprazolam (Xanax) 72.00% Pos 16.00% Neg 12.00% ISE ----ooo++++++++++++++++++
    Fentanyl Transdermal Patch 71.43% Pos 28.57% Neg 28.57% ISE --+++++
    Zolpidem (Ambien) 70.00% Pos 20.00% Neg 26.67% ISE ------ooooo+++++++++++++++++++++
    Acyclovir 67.86% Pos 10.71% Neg 7.14% ISE ---oooooo+++++++++++++++++++
    Famciclovir (Famvir) 66.67% Pos 11.11% Neg 0.00% ISE -ooo++++++
    Tramadol (Ultram) 66.67% Pos 12.50% Neg 20.83% ISE ---ooooo++++++++++++++++
    Propoxyphene-Acetaminophen (Darvo 66.67% Pos 16.67% Neg 16.67% ISE -o++++
    Doxycycline 66.00% Pos 12.00% Neg 8.00% ISE ------oooooooooooo+++++++++++++++++++++++++++++++++
    Diazepam (Valium) 64.71% Pos 17.65% Neg 17.65% ISE ------oooooo++++++++++++++++++++++
    Azithromycin (Zithromax) 64.10% Pos 10.26% Neg 2.56% ISE ----oooooooooo+++++++++++++++++++++++++
    Valacyclovir (Valtrex) 64.00% Pos 8.00% Neg 8.00% ISE --ooooooo++++++++++++++++
    Lidocaine Transdermal 62.50% Pos 6.25% Neg 0.00% ISE -ooooo++++++++++
    Demerol 62.50% Pos 0.00% Neg 0.00% ISE ooo+++++
    Naproxen prescription 62.50% Pos 12.50% Neg 37.50% ISE --oooo++++++++++
    Fluconazole (Diflucan) 60.98% Pos 14.63% Neg 4.88% ISE ------ooooooooooo+++++++++++++++++++++++++
    Morphine Sulphate 60.00% Pos 20.00% Neg 26.67% ISE ---ooo+++++++++
    Hydrocortisone (Cortef) 60.00% Pos 24.00% Neg 8.00% ISE ------oooo+++++++++++++++
    Cyclobenzaprine (Flexeril) 59.09% Pos 18.18% Neg 13.64% ISE ----ooooo+++++++++++++
    Oxygen Therapy 58.33% Pos 0.00% Neg 0.00% ISE ooooo+++++++
    Hydroxychloroquine (Plaquenil) 58.33% Pos 8.33% Neg 16.67% ISE -oooo+++++++
    Escitaprolam (Lexapro) 58.33% Pos 33.33% Neg 33.33% ISE ----o+++++++
    Levothyroxin (Synthroid) 57.69% Pos 11.54% Neg 7.69% ISE ---ooooooooo+++++++++++++++
    Ibuprofen prescription 57.14% Pos 9.52% Neg 9.52% ISE ----oooooooooooooo++++++++++++++++++++++++
    Metaxalone (Skelaxin) 57.14% Pos 14.29% Neg 14.29% ISE -oo++++
    Lamotrigine (Lamictal) 57.14% Pos 14.29% Neg 0.00% ISE -oo++++
    Valganciclovir (Valcyte) 55.56% Pos 22.22% Neg 11.11% ISE --oo+++++
    Vitamin B12 injection 54.84% Pos 4.84% Neg 4.84% ISE ---oooooooooooooooooooooooooo++++++++++++++++++++++++++++++++++
    Vitamin B12 prescription 54.84% Pos 0.00% Neg 0.00% ISE oooooooooooooo+++++++++++++++++
    Amphetamine-Dextroamphetamine (Ad 52.38% Pos 38.10% Neg 19.05% ISE --------oo+++++++++++
    Thyroid hormone-T3 T4 (Bio-identi 52.00% Pos 16.00% Neg 8.00% ISE ----oooooooo+++++++++++++
    Intravenous Immunoglobulin IVIg 50.00% Pos 16.67% Neg 16.67% ISE -oo+++
    Cimetidine (Tagamet) 50.00% Pos 7.14% Neg 0.00% ISE -oooooo+++++++
    Naltrexone (Low Dose Naltrexone) 50.00% Pos 20.00% Neg 10.00% ISE --------oooooooooooo++++++++++++++++++++
    Oxazepam (Serax) 50.00% Pos 16.67% Neg 0.00% ISE -oo+++
    Tetracycline 50.00% Pos 13.64% Neg 13.64% ISE ---oooooooo+++++++++++
    Cholestyramine (Questran) 50.00% Pos 20.00% Neg 0.00% ISE --oooo+++++
    Fludrocortisone (Florinef) 50.00% Pos 20.83% Neg 20.83% ISE -----ooooooooo++++++++++++
    Myer’s Cocktail IV (nutrient mi 50.00% Pos 5.56% Neg 5.56% ISE -oooooooo+++++++++
    Vitamin D Prescription (Rocaltrol 48.28% Pos 13.79% Neg 3.45% ISE ----oooooooooooo++++++++++++++
    Minocycline (Minoclin) 47.37% Pos 10.53% Neg 5.26% ISE --oooooooo+++++++++
    Propanolol (Inderal) 47.06% Pos 11.76% Neg 23.53% ISE --ooooooo++++++++
    Temazepam (Plaquenil) 46.15% Pos 30.77% Neg 30.77% ISE ----ooo++++++
    Prilosec (omeprazole) 46.15% Pos 0.00% Neg 0.00% ISE ooooooo++++++
    Imitrex (Sumatriptan) 45.45% Pos 18.18% Neg 36.36% ISE --oooo+++++
    Thyroid Extract (Armour Thyroid, 45.16% Pos 25.81% Neg 12.90% ISE --------ooooooooo++++++++++++++
    Amantadine (Symmetrel) 44.44% Pos 11.11% Neg 22.22% ISE -oooo++++
    Nystatin 44.12% Pos 11.76% Neg 8.82% ISE ----ooooooooooooooo+++++++++++++++
    Doxepin (Sinequan) 43.48% Pos 26.09% Neg 8.70% ISE ------ooooooo++++++++++
    Ciprofloxacin (Cipro) 43.48% Pos 8.70% Neg 13.04% ISE --ooooooooooo++++++++++
    Eszopiclone (Lunesta) 42.86% Pos 14.29% Neg 7.14% ISE --oooooo++++++
    Gabapentin (Neurontin) 42.86% Pos 34.29% Neg 22.86% ISE ------------oooooooo+++++++++++++++
    Omeprazole (Prilosec) 42.86% Pos 14.29% Neg 0.00% ISE ---ooooooooo+++++++++
    Celecoxib (Celebrex) 41.67% Pos 41.67% Neg 25.00% ISE -----oo+++++
    Immunovir (Isoprinosine) 41.18% Pos 11.76% Neg 17.65% ISE --oooooooo+++++++
    Citaprolam (Celexa) 40.00% Pos 50.00% Neg 20.00% ISE -----o++++
    Hepapressin injection (Kutapressi 40.00% Pos 10.00% Neg 10.00% ISE -ooooo++++
    Acetominophen prescription (Tylen 39.34% Pos 3.28% Neg 8.20% ISE --ooooooooooooooooooooooooooooooooooo++++++++++++++++++++++++
    Penicillin 36.36% Pos 18.18% Neg 12.12% ISE ------ooooooooooooooo++++++++++++
    Glutathione 36.11% Pos 13.89% Neg 2.78% ISE -----ooooooooooooooooooo+++++++++++++
    Methylphenidate (Ritalin) 35.29% Pos 47.06% Neg 17.65% ISE --------ooo++++++
    Cortisone 34.48% Pos 31.03% Neg 3.45% ISE ---------oooooooooo++++++++++
    Prednisolone 33.33% Pos 22.22% Neg 0.00% ISE --oooo+++
    Citopam (citalopram) 33.33% Pos 33.33% Neg 33.33% ISE ---ooo+++
    Bupropion (Wellbutrin) 31.03% Pos 34.48% Neg 20.69% ISE ----------oooooooooo+++++++++
    Vitamin C IV 30.43% Pos 8.70% Neg 4.35% ISE --oooooooooooooo+++++++
    Cortisone injection 28.57% Pos 35.71% Neg 7.14% ISE -----ooooo++++
    Prednisone 27.27% Pos 31.82% Neg 22.73% ISE -------ooooooooo++++++
    Trazadone (Desyrel) 26.67% Pos 46.67% Neg 20.00% ISE -------ooooo++++
    Amitriptyline (Elavil) 21.05% Pos 50.00% Neg 39.47% ISE -------------------ooooooooooo++++++++
    Modafinil (Provigil) 20.83% Pos 66.67% Neg 8.33% ISE ----------------oooo+++++
    Fluoxetine (Prozac) 20.59% Pos 35.29% Neg 23.53% ISE ------------ooooooooooooooo+++++++
    Venlafaxine (Effexor) 19.05% Pos 61.90% Neg 52.38% ISE -------------oooo++++
    Pregablin (Lyrica) 16.67% Pos 55.56% Neg 33.33% ISE ----------oooooo+++
    Influenza vaccine (flu shot) 13.16% Pos 42.11% Neg 10.53% ISE ----------------ooooooooooooooooo+++++
    Quetiapine (Seroquel) 12.50% Pos 62.50% Neg 37.50% ISE -----oo+
    Sertraline (Zoloft) 11.54% Pos 57.69% Neg 34.62% ISE ---------------oooooooo+++
    Paroxetine (Paxil) 10.53% Pos 47.37% Neg 36.84% ISE ---------oooooooo++
    Armodafinil (Nuvigil) 0.00% Pos 66.67% Neg 0.00% ISE ----oo
    http://www.mecfsforums.com/index.php/topic,13093.0.html
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks, heaps, Heaps!

    Very interesting. Didn't see midodrine on there? Wonder why?

    Sushi
    ahimsa likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interesting to see how many find narcotics and benzo's effective, i think that shows how much pain alot of people are in as well as the high levels of sleep issues.
  4. SOC

    SOC Moderator and Senior Member

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    Agreed. I think most of our top specialists agree that getting pain and sleep issues under control is critical. Most of them try to address these issues very early in treatment.

    Sadly, the treatments for pain and sleep don't do much for PEM. :(
  5. beaverfury

    beaverfury beaverfury

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    Ar, this is good. Thanks.

    A lot of antidepressants at the bottom of the list.

    Why is nizoral on the list?.. does that mean we feel better when we wash our hair?
  6. xchocoholic

    xchocoholic Senior Member

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    What would this list look like if we took out the drugs that suppressed symptoms but
    did nothing for the root cause ?

    Or if we discounted the positive results achieved by the brain altering affects of the drug ?
  7. madietodd

    madietodd Senior Member

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    I soooooo wish for a 'save' button! I'll need this in about 6 weeks when Dr. Rey calls me with treatment options.
  8. SOC

    SOC Moderator and Senior Member

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    Since we don't know the root cause, all treatments are symptomatic treatments. That's all we have at the moment, but treating symptoms can give a huge quality of life improvement. Most of us function better with less pain,OI, or GI symptoms, and more sleep. :)

    Sometimes the "brain altering" affects of the drug are very positive improvements in physical neurologically-based symptoms like sleep, pain, or OI. They may not be the primary effects for which they (ADs in particular) are marketed, but they are still significant neurological effects of the drug.

    However, if you want to discount the mind- or mood-altering effects of drugs, I'm with you. We can't happy away this illness.
    heapsreal likes this.
  9. peggy-sue

    peggy-sue

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    MaddieTodd - you could copy and paste it into a word document. ;)
    madietodd likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    Some of the treatments listed could target root causes for some symptoms of me/cfs. Like the b12,
    Meyer's cocktail, d, candida treatment, etc. I don't know very many drug names so those were the only ones I knew off
    the top of my head.

    I'm getting ready to start a prescription parasite treament (mebendazole and albendazole) and I've seen that linked to cfs. I don't know other parasite drugs names.

    Fwiw, "They" may not know the root cause of everyone's me/cfs but imho, that's because in most cases
    they haven't looked.

    I wonder how many of the root cause treatments I see listed were used in conjunction with
    other root cause treatments. That's the kind of cfs doctor we need.


    Tc .. X
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Nizoral is also an antifungal medication similar to diflucan. If one has fungal issues on the outside of their body eg tinea then nizoral shampoo would also help.
  12. richvank

    richvank Senior Member

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    Hi, all.

    I see that B12 is rated pretty well, but I want to note that the key to getting greater benefit from it is to combine it with methylfolate. Together, they will lift the partial methylation cycle block, and that addresses what appears to be the root problem in the pathophysiology. It doesn't address the etiologies, which vary from one person to another, but correcting the pathophysiology is a major piece of the treatment puzzle. Note that the methylation treatment, which combines these two with some other nutrients, ranks in the top 10% on Curetogether.com

    http://curetogether.com/chronic-fatigue-syndrome/treatments/

    Best regards,

    Rich
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, I agree with Rich. B12 needs to be used with other supplements. There are so many important supplements to use together.
  14. taniaaust1

    taniaaust1 Senior Member

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    Interesting to see so many of the meds Ive reacted quite poorly too, towards the bottom of the list. Thou I reacted very badly to it, I would of thought Amitriptyline (Elavil) would of rated better then it did as I know my CFS specialist commonly prescribes that for sleep in his ME/CFS patients ..so Im shocked to see a 50% negative result

  15. roxie60

    roxie60 Senior Member

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    I little scary to see nuvigil at the very bottom of the list and with so many 'neg' reports. Just saw a nuerologist yesterday fianally and he told me if I went on nuvigil it would give me day time energy. I also got the impression he did not value my Drs diagnosis of CFS/FM. I spent the night worrying / fretting about taking Nuvigil just from past poor experiences with pharma but his attitude towards CFS/FM also has me concerned. Got the nuvigil today (1 pill short of 30, darn pharmacy, now have to go back). Anyway, still trying to decde if I am going to take this, my hope is for more energy but afraid since I am feeling slightly better I dont want to do anyting to mess that up. Also Drs strong suspicion I have Celiac. Oh goody. Anyone here using Nuvigil with good results?
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Can you cut the pill and take part of it? I reacted pretty badly to it when I tried it.

    Sushi
  17. K2 for Hope

    K2 for Hope ALways Hoping

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    Jacksonville, FL 32258
    Roxie,

    You could always start a new thread and see what comments you get. :)
  18. roxie60

    roxie60 Senior Member

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    I can try that, he gave me the lower dose, 150mg not the normal 250mg. Which amount were you given? you can reply PM since I probabably should have started another thread as suggested, really very tired brain and body tonight so not thinking clearly.
  19. K2 for Hope

    K2 for Hope ALways Hoping

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    Roxie:

    I was only suggesting a new thread so you would be able to get more responses, both positive and negative.

    I was on Provigil for awhile, but have never been on Nuvigil. I was trying to see what the differences were and found this:

    • What's the difference between Provigil and Nuvigil?
    • A: Nuvigil (armodafinil) is the active (-)-(R)-enantiomer of the racemic drug Provigil (modafinil). Nuvigil is the longer-lasting isomer of modafinil. Nuvigil contains armodafinil (R-modafinil), the longer-lasting isomer of modafinil. On an mg/mg basis, Nuvigil sustains higher plasma levels longer than modafinil.
  20. roxie60

    roxie60 Senior Member

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    I agree K2, I though it was a good suggestion, I was just really hurting and tired last night. I have been trying to read Yasko's Pathway to Recovery and sitting and reading seems to just drain my energy. Thanks for the added info. Already a crazy morning. microwave overflowed coffee. Pharmacy called did no short Nuvigil, came from manufactuer shorted.

    I will start a new thread, maybe the mods can move your post there since it has relevant info to those using or thinking of using Nuvigil. Thx.
    K2 for Hope likes this.

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