Thursday, December 9, 2010

Testimony From a patient

A patient which I will only identify by the name of Ms. X, has provided me with her account of living with CFS, and how as a desperate measure she finally found a doctor that would prescribe her antiretrovirals.  Ms. X is 36 years old, and has been living with CFS since age 24.  She was once a very active person - having completed the Boston Marathon one year before coming down with CFS.  It all started with flu like symptoms she states, but she never fully recover until...  By age 25, she would endure malaise on a daily basis - seeing specialist after specialist - two rheumatologists, a sleep specialist, cardiologist.  By age 28, she would struggle to work part-time.  At age 31, she was admitted to a psychiatric hospital after becoming suicidal as a result of doctors giving her the runaround.  It was at this time that she was diagnosed with CFS - and she began graded exercise therapy, which left her even more fatigued.

At the time the Mikovits et. al study came out, she had been unemployed for 3 years.  At this time, she began to travel around the country looking for a doctor that would prescribe her antiretrovirals - most doctors were extremely relucatant, until she found one in San Francisco that treated HIV patients early in the epidemic.  She was given a two drug combination - Isentress (Raltegravir), and Viread (Tenofovir).  Initially, she felt worse (Fever, chills, cough), and almost stopped taking the drugs, but after 21 days began a rapid and sustained improvement.  After 3 months, she no longer experienced any musculoskeletal pain, nor any post-exertional malaise, she would return to work full time by 4 months - and currently is capable of exercising 1 hour per day.  For her, the monthly cost of the combo treatment comes to a staggering $1500 a month - something she could not afford on her own, nor would any HMO or drug plan want anything to do with it - luckily for help from her family.


  1. Just curious if Ms. X was XMRV+. I didn't see a mention of this, just that she was diagnosed with CFS.

  2. I'd also be curious to know which doctor would it be in San Francisco? That would really help. Thanks,

  3. I hope the UPMC HIV/AIDS Clinic in Pittsburgh is reading this. They have refused to treat me for CFS.And yet who has more experience with these drugs?

  4. Sounds similar to Jamie Deckoff Jone's improvement. The more positive case reports, the better..

  5. Would it be possible to share where Ms. X lives?

    Thanks, Lisa

  6. It's very interesting that it took only two of the HIV drugs, unlike the three that Dr Deckoff-Jones and her daughter, Ali, are taking.

    It's the Isentress that costs about $1000/month. I'm so envious of those who have family to help them recover, since my country, my government, and the insurance industry refuse to do so.

  7. could you please contact me via email:

    i have some questions, but would rather not post publicly.

    thanks so much.

    thanks for all the great posts recently!!!!

  8. What dose Raltegravir and Tenofovir is she taking?

  9. Hey, that's a spectacular progress report. I can't figure out why I didn't hear about this before. Maybe I have to read more groups.

    Welcome back, Tim. I was afraid the dark side had bought your silence.

    I see U of A has Broderick working on CFS with both Klimas and Bateman's group. Also, the other Doc that offered commentary on Alter/Lo's paper, and pushes for anti-retroviral therapy trials, is at U of A, too.

  10. Tenofovir can be had cheaply (under $200/mo for 300mg/day) from an overseas/internet pharmacy because it does not have patent protection in India.

  11. Did anyone see that totally touching documentary "The Lazarus Effect" about bringing HIV drugs to africa for 40¢ a day? Why does it cost $1500 a month for sick people here, when it can be obtained for 40¢ a day? Perhaps it's a different pair of drugs, but still...
    Also, perhaps the company that makes Raltegrovir has a free program for people with limited income? Some companies do.

  12. Dr Luckett, I hope this woman and her doctor have been in touch with WPI/Dr Mikovits and/or Dr Jamie Deckoff-Jones. They are collecting anecdotal evidence of physicians and patients trialing ART and will present their findings Jan 17 at Gordon Medical Associates in Santa Rosa CA.

  13. Dr. Luckett,
    Thank you for sharing this patient's story. I am a 33 year old, former runner with CFS, Lyme and XMRV. I am wondering if you could share with me the physician in San Francisco, or pass on my email to Ms. X? I am a fellow blogger, a huge fan of your site and extremely interested in ARV's. Any direction you could provide would be much appreciated! My email is:

    Thank you for all of the work you do on behalf of this patient community!

  14. Dr. Luckett,

    First of all, I appologize for my bad English.

    I would like to know if can I test for MLV/XMRV/PMRV in South America (Brazil), and how can I do that. I didn't get this information from the public health organisms here. Maybe there ...

    My e-mail:

    Thank you ... mostly for comming back.