3 medicines that almost cured my severe ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by Ales, Sep 18, 2008.

  1. Ales

    Ales New Member

    I have been suffering from ME/CFS for more than 10 years. It started on 23 June 1998 like something which looked like an infectious mononucleosis.

    I have experimented with nearly 200 prescription medicines. I can say that three medicines were really markedly effective.

    First it is the SSRI citalopram, it works probably by inhibiting the central proinflammatory cytokines. I am taking 10mg daily.

    Next it is the stimulant modafinil. I have no definitive idea why it works but other stimulants, like methylphenidate or dextroamphetamine, are used in the treatment of traumatic brain injury. I use quite big doses, i.e., 200mg t.i.d. or even q.i.d.

    The third medicine, which I found to be remarkably effective, is the steroid oxandrolone. It works probably by its ability to induce erythropoietin synthesis, which is a peculiar neuroprotectant and a neuroreparative agent.

    Ales, Central Europe
    Waynesrhythm likes this.
  2. ladybugmandy

    ladybugmandy Member

    i am so glad you are better!

    may i ask if you have looked into the possibility that the virus you acquired originally might still be active?

    thank you
  3. jprr99

    jprr99 New Member

    How are things going with you being under Dr. Lerner's care? Please keep me posted. Hope you are well. Thanks--

  4. Ales

    Ales New Member

    Hello ladybugmandy,

    the problem is that I don't know exactly what is the cause of my health, mainly neurological and immunological, problems. One possibility is a persistent viral neuroinfection as when they did electron microscopic examination of my cerebrospinal fluid they found herpes viruses in it. And concerning what was published here recently relating to the HHV-6 conference and the findings of Dr. Anthony Komaroff it might be the case that the gist of my health problems lies in the HHV-6 infection of my brain. It would explain why SSRI work since HHV-6 upregulates central proinflammatory cytokines and these can cause all the ME/CFS symptomatology as seen in, say, HCV infected patients treated with interferon alpha. Another possibility is that a virus infection injured the brain tissue somehow and in this case oxandrolone would be helpful since beside neuroregenerative EPO production it also speeds up wounds healing.
  5. KingNeptune11

    KingNeptune11 New Member

    I had tried compounded oxandrolone for treating my CFS but had a bad reaction to the compounded medication......Do you get a prescription for it or do you have other ways of getting that prescription.....???

    Thanks for any info you can provide........JR
  6. KingNeptune11

    KingNeptune11 New Member

    for ales.....
  7. aftermath

    aftermath New Member

    This script has to be nearly impossible to get in the US on a ME/CFS diagnosis.

  8. kitteejo

    kitteejo Member


    Did these meds help with your fatigue or your pain? My fatigue is unbearable.

  9. romalaw

    romalaw Member

    I'm very interested in hearing more details about your healing. What was your level of functioning when you first became ill, at what point in your illness did you begin these medications. How long before you began to see results. How would you describe your functioning today as it relates to energy, memory and other cognitive functions, pain, and general wellness. What symptoms do you still have and to what degree have others been ameliriorated.

    I am not familiar with the steroid, how specifically does it relieve your symptoms.

    Any further details you can provide is most appreciated.
  10. Ales

    Ales New Member

    Hello all,

    first, excuse please my imperfect English, it is not my native language, I live in EU.

    My ME/CFS started suddenly on 23 June 1998 like a flu or more precisely like an infectious mononucleosis, I had lymphadenopathy, sore throat and fevers. Before the onset of the illness I used to run ultramarathon (100km), swam a lot, competed in karate at the national level etc. Suddenly I was unable to walk more than 15 meters due to extreme exhaustion, I was so dizzy that it was nearly impossible to safely cross a street, I had 15 times a "flu" in the time period from autumn till summer, I had constantly sore throat and I felt a pain in my head localized mainly to the left side in the upper part of the temporal lobe, I was unable to concentrate mentally at even reading a newspaper or watching news, also the short time memory was significantly impaired, it was like a pseudodementia. The symptoms worsened significantly after a "flu" or after a "longer" walk.

    After 5 years it was unbearable, euthanasia seemed to be the only rational solution. Despite I didn't suffer from a clinical depression like MDD I accidentally tried SSRI citalopram (prehaps Celexa in the USA) since I was sure from the beginning that the core of my health problems lies in defect brain functioning, be it brain biochemistry or organic lesion I wanted to try to give the brain an "impetus". Surprisingly the citalopram worked miraculously but it didn't lead to a complete recovery. Dizziness disappeared but the central fatigue, flu-like feeling and the localized pain in the head remained. Since 2003 I tried more than 100 prescription medicines. Modafinil in quite large doses up to 1200 mg daily together with 100-200mg of quetiapine (Seroquel) for the ensuing insomnia caused another significant improvement. Another substantial improvement has recently been brought about by oxandrolone. I bought via internet on-line pharmacies many of medicines I tried, including oxandrolone and modafinil.

    For the first 5 years of my illness in 1998-2003 my overall functioning was down to 1% of the premorbid state. Now it's about 90-95%.
  11. romalaw

    romalaw Member

    Thank you so much for the details on your illness. Has your recovery been gradual or did it happen quickly once you found the right drug combination. How would you compare your cognitive function and memory now as compared to your premorbid state. I'd ask the same question about your energy and physical stamina.

    Also, if you don't mind my asking, how old are you and are you a male?

    I think part of the key to improvement with this illness is finding the right "keys" that fit one's individual physiology. Congratulations on your recovery and the persistence it took to get to where you are.
    [This Message was Edited on 09/27/2008]
  12. tennisnut

    tennisnut New Member

  13. romalaw

    romalaw Member

  14. Ales

    Ales New Member


    thank you for the interest. When I fell ill I was 22 years old,now I am 32, I am male. My condition improved very, very slowly during 1998-2003 when I used no medication then in spring 2003 I had another "flu" after which my condition deteriorated dramatically. When I started to take citalopram in the summer of 2003 my condition started to improve gradually and I extrapolated that I could be healthy in about 3-4 months, however, the improvement discontinued to be so fast after a few months. So the improvement caused by citalopram slowed down and another substantial improvement occurred when I discovered modafinil in the spring of 2007. The improvement brought about by modafinil was relatively less than that caused by citalopram. Recently oxandrolone has been relatively as effective as citalopram. My mental abilities are now at about 85-95% of the premorbid state, I work again in a field related to what I studied at the university, i.e., mathematics.
    Waynesrhythm likes this.
  15. JenniferAnn539

    JenniferAnn539 New Member


    Thank you so much for sharing this information with us.

    Wishing you all the best in your continued recovery.

  16. Lichu3

    Lichu3 New Member

    No apologies for your English.......it is very good, especially since you are dealing with such technical terms.

    How did you get electron microscopy of your cerebrospinal fluid for herpes virus? It's so hard to pinpoint HHV-6 infection with commercially available tests here in the U.S. and hard evidence such as what you have would be very helpful for many of us.
  17. Wolverine

    Wolverine Member

    Great to see you've gotten so well from these meds, and that you have narrowed them down from a couple of hundred!

    Ive tried so many aswell, and can't tolerate most of them.

    I did try cipramil once (citalopram), but i got very nauseous and shaky from it. Did you get that at first? Therefore i didnt continue past the 2nd day.

    I have lately been thinking about trying it again, as i feel alot of my neuron/brain function is way off balance. Ive been losing control of my body, crashing blood pressures etc, with no explaination. Im thinking it's probably HPA, and autonomic nervous dysfunction related. I'm hoping citalopram may help, if i get through the initial nausea / shaking stage.

    Did you get these symptoms at first?