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Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

Discussion in 'General Treatment' started by Hip, Jul 25, 2014.

  1. thebabyj

    thebabyj

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    As someone who is starting their journey with this illness, I feel so thankful to have this amazing resource. Much appreciated @Hip!
     
  2. Hip

    Hip Senior Member

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    I am glad you find it useful, @thebabyj.
     
    thebabyj likes this.
  3. joanna91

    joanna91

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    Hip, this is a very, very good and informative list. I have read through it several times and I find it very helpful.
    However, I would like to add a few more things that may be helpful.

    Modafinil “aka Provigil” has been shown to help treat Chronic Fatigue Syndrome.

    http://phoenixrising.me/treating-cf...fs-central-nervous-system-stimulants-provigil

    “Dr. Lapp reports Provigil is safe, offers little risk of habituation and improves fatigue, mental clarity, attention deficits and depression. Dr. Teitelbaum recommends Provigil for energy and daytime sleepiness (narcolepsy). Because he is unclear about its long term effects, however, he prefers Dexedrine. Dr. Natelson finds Provigil helps in about a quarter of his patients, another quarter find no improvement and sensitivity issues preclude it from being used in the remaining half. Dr. Podell also reports that Provigil is effective in a ‘significant minority’ of his patients. Dr. Bateman has found Provigil can worsen sleep in patients with disturbed sleep patterns. One drawback is the high cost. of the drug.”

    Recovery from chronic fatigue syndrome with modafinil
    https://www.researchgate.net/public..._from_chronic_fatigue_syndrome_with_modafinil

    The above link talks about a patient with severe chronic fatigue syndrome who suffered from CFS for 13 years. At the peak of his illness, he was confined to a wheelchair and was barely able to sit up or feed himself. After taking Modafinil, at 200mcg for several months, he noticed that his energy levels improved 20-60%, he was able to return to work part-time and he started to finally have a normal life. This is a substantial improvement.

    In other cases of Chronic Fatigue Syndrome, it may be necessary to treat with Hypothalamus Glandulars despite normal blood tests.

    “Dr. Jacob Teitelbaum says that suppression of the hormonal system plays a huge role in Chronic Fatigue Syndrome and this often occurs despite hormonal blood tests being normal.”

    The pineal, hypothalamus, and pituitary glands work together to direct and balance the metabolic system (the body’s energy) and the immune system (the body’s defense systems), as well as the autonomic nervous system, which is the part of the nervous system that controls blood flow to the skin, muscles and organs. Current evidence suggests that a major portion of the symptoms of CFS are manifestations of a poorly functioning hypothalamus.

    “Also because of hormonal imbalances, particularly that of the hypothalamus, and the immune dysfunction these imbalances cause, PWCs also seem to have infections that usually do not cause illness in most people and recurrent infections.”

    Read about it here: http://www.fightingfatigue.org/cfs-symptoms-series-hormonal-imbalances/

    http://www.news-medical.net/news/20...CFS-fatigue-fibromyalgia-and-muscle-pain.aspx

    Please consider adding these two to the list. Thank you.
     
    Abha likes this.
  4. halcyon

    halcyon Senior Member

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    A recent systematic review found modafinil was not effective at treating ME/CFS. This doesn't surprise me as I was actually taking modafinil when I came down with ME and I instantly was unable to tolerate it. Modafinil works great for excessive daytime sleepiness but it doesn't have much effect on fatigue in my experience.
     
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  5. joanna91

    joanna91

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    Well, what about that patient with severe CFS who was in a wheel chair for 13 years (Mr. C)? Modafinil has helped him with the fatigue and it can help others too, although I'm not saying it's a cure.

    It helps some people, maybe not others.

    Look at these reviews. Modafinil for Chronic Fatigue Syndrome. People are giving it either really high ratings or really low ratings. It really is a hit or miss drug.

    https://www.drugs.com/comments/modafinil/for-chronic-fatigue-syndrome-cfs.html
     
  6. Hip

    Hip Senior Member

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    Hi @joanna91, thanks for your suggestions.

    I have added modafinil to the roadmap, since the link you provided suggest some ME/CFS doctors find this drug helps some patients. And in the ME Association survey (see page 9), 37% of patients said they found it helpful.

    Although this study (which is the one @halcyon's systematic review refers to) suggests it's not beneficial.


    I cannot find any evidence or even anecdotes for hypothalamus glandulars being helpful. Although specific hormones such as melatonin, DHEA, fludrocortisone and hydrocortisone can be helpful for some patients.


    Generally speaking, even if we exclude antivirals, antibiotics and immunomodulators, there are still dozens drugs that may be helpful for some ME/CFS patients. Maija Haavisto's book details 250 drugs for ME/CFS. Dr Jay Goldstein's top 23 drugs for ME/CFS are listed here.

    But I expect a lot of these drugs are only going to help a very small percentage of ME/CFS patients.
     
  7. joanna91

    joanna91

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    Hypothalamic dysfunction can cause Chronic Fatigue Syndrome

    http://www.news-medical.net/news/20...ction-can-cause-Chronic-Fatigue-Syndrome.aspx

    "Although many stresses, including numerous infections, can trigger CFS, Dr. Teitelbaum (a prominent ME/CFS doctor) identifies hypothalamic dysfunction as the mechanism responsible for the wide range of disabling and seemingly unconnected symptoms suffered by CFS patients. "If you're exhausted but can't sleep, experience brain fog, weight gain, achiness, and low libido--it's highly likely that you have Chronic Fatigue Syndrome," he explained. "When the system is over-stressed, the hypothalamus acts like a circuit breaker that shuts off the power to protect body and mind from further damage.

    "I know what patients are going through," Dr. Teitelbaum concluded. "Regardless of what doctors may have told you in the past, this disease is real, but it is treatable and you can get your life back.""

    Dr. Teitelbaum actually suffered from CFS himself when he was in his 20s.

    Here's an anecdote of someone who cured his CFS by taking Hypothalamus Glandulars:

    http://www.healingwell.com/community/default.aspx?f=15&m=3160005
     
  8. Hip

    Hip Senior Member

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    A doctor simply claiming that hypothalamic dysfunction causes ME/CFS does not mean very much. In science, you need evidence to back you assertions. There is hypothalamic-pituitary-adrenal (HPA) axis dysfunction in ME/CFS, but that that in itself does not prove that the HPA axis dysfunction causes ME/CFS. It is possible it might, but we do not know.



    Thanks for the link. Anecdotes like this are interesting, but there are actually dozens of stories like this, where some treatment has led to a major improvement or remission in ME/CFS in one patient. But you usually find when other patients try the same treatment, it does not work for them. Of course, if someone wants to try the treatment, that's great. I tend to try many treatments, even if it is just anecdotally reported. I might even try this one.

    But in the roadmap, I try to only include treatments that are backed up by studies, and that have show benefit for a significant percentage of patients.


    According to this post, Dr Cheney found that hypothalamus glandulars had a bad effect on ME/CFS.
     
    Last edited: Jun 22, 2016
  9. Hip

    Hip Senior Member

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    Anyway @joanna91, thanks very much for the suggestion of adding modafinil to the roadmap.

    If you can think of any other drugs or supplements that could be added, please let me know. But these should be supported with evidence such as a published study, or if several ME/CFS doctors use them and report they work, that's also sufficient evidence for inclusion in the roadmap.
     
  10. out2lunch

    out2lunch Senior Member

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    OK. This is very important for me because I'm back on modafinil thanks to additional stress in my life right now that's brought back my narcolepsy and cataplexy symptoms. I would like to segue to a related issue concerning the terrible dance between ME/CFS/FMS and narcolepsy/cataplexy.

    Quick survey: who here in this thread has experienced obvious symptoms of cataplexy with or without obvious symptoms of narcolepsy that couldn't be explained by another condition, like excessive daytime sleepiness (EDS) from apnea, insomnia, medication, etc?

    And for those who answered "yes" for the above question… were you tested for narcolepsy in a sleep lab but the results were negative because REM wasn't observed during the first 15 minutes of each sleep period?

    This situation has me baffled! Stanford sleep neurologists are positive I don't have narcolepsy, even though I have the gene, it runs through my mom's family, and strong emotions like fear produces cataplexy with and without EDS. The reason? No REM during the daytime sleep testing periods.

    But that's where I question whether or not their criteria is appropriate for my patient population: I produced virtually no REM during the evening testing the night before, during 4.5 hours of sleep. Which is common in fibromyalgia.

    I get the sense that very little testing for narcolepsy has been done in folks with ME/CFS/FMS. And if that is the case… then how do these researchers know whether or not these two conditions can co-exist?

    If the ME/CFS/FMS disrupts the typical sleep cycle and results in loss of Stage 3/4 and REM sleep… then how can you produce REM sleep during the daytime sleep episodes typical in narcolepsy and cataplexy?

    Why can't these sleep intrusions into wakeful states be Stage 1 or Stage 2 sleep? Why does it have to be REM in order to qualify as narcolepsy/cataplexy?


    The more I learn about other ME/CFS/FMS patients having the same problems with narcolepsy/cataplexy symptoms, the more I believe it is narcolepsy/cataplexy but as a non-REM variant. This seriously needs to be studied. It might be the key for why some folks like me go through periods of unbelievable extremity weakness and no discoverable cause: it's actually cataplexy but no one is even thinking about the possibility.
     
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  11. Hip

    Hip Senior Member

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    @out2lunch
    You might get a better response if you post your question on one of the existing threads on narcolepsy (or start a new thread).
     
    out2lunch likes this.
  12. out2lunch

    out2lunch Senior Member

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    Thanks!
     
  13. joanna91

    joanna91

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    You are very welcome. I am going to try either Hypothalamus/Pituitary Glandular for the HPA Axis Dysfunction or possibly Cortef for my cfs.

    Thanks!
     
  14. halcyon

    halcyon Senior Member

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    I thought Stanford was able to do a spinal tap to check orexin levels in your CSF to definitively diagnose narcolepsy, or maybe they're not doing that anymore.
     
  15. out2lunch

    out2lunch Senior Member

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    I don't believe they're doing that anymore, since that wasn't an option given to me. Or perhaps they didn't want to do it, given that I'm not having sleep drop attacks like my aunt to used to have.

    The symptoms are mainly bothersome in terms of functionality. They're rarely dangerous, with only two episodes of wide awake drop attack paralysis in the past 30 years. I'm still able to move about and do stuff, just very slowly and cautiously when I'm weak and fighting the sleepies. :sleep:
     
  16. Angela828

    Angela828

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    My sleep study found the same thing. They diganosed me with "Narcoleptic Syndrome" because while I was able to fall asleep quickly during the naps, I didn't go into REM sleep each time. The Dr. felt this could have been the result of the Cymbalta I was taking at the time, but still wouldn't go as far as giving me a full narco diagnosis.
    I also had the spinal tap through Dr. Rye at Emory and it came back positive. Provigil helped me for years until it stopped working altogether. We had a good run - though it was hardly a cure. I never felt awake in the natural sense but I could at least focus and keep my eyes open.
     
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  17. Chieftain

    Chieftain

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    Thanks so much Hip, this is what's been missing for a while: A compendium of resources for the newbie!
     
    Jennifer J and Hip like this.
  18. Mary

    Mary Senior Member

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    Southern California
    @Hip, this is a great resource for newcomers and all of us - I don't know how I missed it before but have bookmarked it now! :thumbsup:
     
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  19. rodgergrummidge

    rodgergrummidge

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    Fantastic effort Hip! Absolutely wonderful!

    Can i ask, are you a doctor?
     
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  20. Hip

    Hip Senior Member

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    Glad you find it useful. I don't have a medical background (I used to work in computer software), but like many people on this forum, picked up a few bits of medical knowledge here and there, over many years.
     
    Jennifer J and bspg like this.

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