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RRP ISA Survey Results


    1

    Artemisinin Patient Reports

    These reports reflect usage of both artemisinin and artesunate, as per the "WMD (What-Michael-Did) Guidelines," between 2006 and 2010. Some but not all of these reports can be confirmed on the RRP Forum section dealing with ART. We closed this page to further input (it was originally intended as a just preliminary report requiring further research) in June 2010.

    (1-2) People already know about the effect of Gardasil and ART on the writer of this section and then on Keith's son. We have just posted an update (4/13/08) of Keith's report, using that same hyperlink. Also see http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=69 for a June 30, 2008 update. See the April 21, 2010 post on  http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=69&start=21.

    Michael Green started ART in February 2006, and his surgery-need went down from an average of about 2 surgeries a year to virtually zero. It's been sustained for five years as of this writing.

    Conclusion: It is unlikely that ART cures RRP. but institutional research is urgently needed. What it does seem to do with a large subset of patients, but not everyone--provided the "WMD-Guidelines" given here are carefully followed so that an "apples to apples" comparison can be made--is to radically slow the process down. In some case, patients may not experience the need for more surgeries, but I am guessing that continuing monthly treatment may be required in the majority of cases.

    Sustained pending further feedback

    (3) Readers may be interested in Amy's story in the message board. She tells the story of giving Gardasil to her two year old son. A Seattle otolaryngologist who has a conservative reputation provided the GARD. Papilloma activity fell sharply from every month to a much more infrequent recurrence rate and the size of the papillomas was reportedly also very much reduced. Amy has now put her son on ART and is reporting that these gains have been extended.  It is, however, hard to tell what the ART is doing as opposed to the GARD.
    Also see this.

    Sustained for four years as of this writing

    (4) This is from a patient who reported by private email. He claims to have had some side-effects (digestive, stress, etc.) from the ART but was very pleased with its effects on his voice and RRP. He said his voice was much stronger.

    Lost touch with patient.

    (5) See Randy's post at http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=97. Another dramatic response.

    Sustained pending further feedback

    (6) Sean reports treating his 1 1/2 year old daughter with ART.  At first, it did NOT appear to be working, but in follow-up communications, Sean reported that "in the past by this time one could barely hear her, but as of today she sounds a lot more promising than the past." He writes: "Her voice has remained strong as after her surgery. This is fantastic news to me. 1.5 months of no whisper." This is a first for their daughter but it apparently didn't last..

    Failure

    (7) Jennifer reports taking ART for pulmonary involvement: On the RRPF listserv, she writes: A group of papillomas spotted in my proximal bronchi at a routine KTP laser office visit in early-December had completely disappeared by the following routine visit four months later, in April. Later reports and CTs show it appears to be holding.

    Sustained pending further feedback

    (8) BenWS reports a sustained period of remission and a stronger voice since taking ART (http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=97 and http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=69). 

    Sustained pending further feedback

    (9) Sherry (board member) has tracheal papillomas. She has had RRP since age 2. She also has lung cancer, ostensibly associated with RRP that converted. She has been a registered nurse for decades, and is on our board. After taking ART for a few weeks, she reports that her physician said he never saw her airway so clear. Sustained through several exams. Lung CT confirms regression of some masses. Effect in the lungs was indeed limited but CT scan, reviewed by this writer, also confirms stabilization and complete disappearance of some other previously noted lesions.

    Sherry has had further setbacks due to cancer, which was previously present as well as RRP.

    (10) George W.'s says that he believes ART is working, though it's way too early to tell. In September 2008, he says that he had a surgery and started ART. Between September-December 2008 no new growths appeared. A papilloma shows on his videostroboscopy photo from February 2009. George took the artesunate only for one month, however, and when the bottle ran out, he says he simply stopped taking it. Since he has not replicated the dosing guidelines on this website (he isn't even taking artesunate), nothing can be said about how ART worked when following the guidelines.

    (11) Laurel V.'s son did not respond to cidofovir. He did respond quite noticeably to ART. See her post here. She waited till she felt confident enough to post this.

    Sustained pending further feedback

    (12) Rob reports failure with ART. Rob later reported that he took his ART with a spoonful of yogurt. That made sense given the first iterations of the "WMD-Guidelines," but in retrospect, it contained too little fat content. It is likely the artemisinin wasn't fully absorbed.

    Failure

    (13) Anouska reports a failure with ART. She later reported that she didn't always take her ART with food or milk products. That would have resulted in greatly diminished ART absorption.

    Failure

    (14) Steve (adult) writes, "I believe that it's likely that Gard/ART had a substantial impact because my voice returned only after I had already received the second Gardasil shot and the initial 'week on, week off' dosing of ART, whereas the previous surgeries had not been sufficient to prevent a hoarse voice or regrowth of the papillomas."

    Sustained pending further feedback

    (15) Mike M. reports that he has been using ART for about 10 months. He says, "I can't help but encourage people to try the ART dosing. My doctor told me to continue doing whatever I was doing to keep the growths from coming back. . . . I was diagnosed with RRP in 08/06.  My recurrence rate was roughly a surgery every 3-4 months.  I went through the usual 2-4 weeks before growths would recur. I started taking ART around 04/08 and have found great success with it.  My best piece of advice is to remain patient and allow it to work."

    Sustained pending further feedback

    (16) Rick reports that his wife had adult-onset RRP. She's required surgery every 12-18 months but has not needed it since commencing ART. It could be the addition of anti-GERD treatment, however, though he says that sh'e been on Prilosec irregularly. We agree that the results reported are interesting but inconclusive. Because of the relative lack of consistency with the anti-GERD medication, we thought this should be reported as a provisional success.

    Too early to tell yet (no followup report noted)

    (17) Nora reports in private email: "I did use ART with [my son] for eight weeks.  Both times his re-growth seemed to be accelerated, with the worst case resulting in a nearly obstructed airway after only 4 weeks. . . .So I stopped administering the ART to him and we have been using cidofivir with him for the last seven procedures.  Cidofivir has held us at a consistent 6-week interval."

    Failure [Nora says that she "pretty strictly" followed the "WMD-Guidelines" as they were originally written, but they were changed periodically to reflect evolving insight and knowledge, especially with respect to the amount of fat content with which to supplement the administration of artemisinin. It appears from talking to Nora that not enough fat content was given to guarantee proper absorption of artemisinin, though this wasn't due to any fault on Nora's part. There was also some erraticness in the dosing of ART because of the disagreeable taste and her son's resistance to taking it in powdered form even if it was mixed with sweeteners.]

    Failure with mixed variables
     

    (18) Mara is 43 and has had RRP since 1991. She writes, "I have required surgeries every 3 to 6 months to maintain a voice. I also want you to know I tried the MMR Therapy for 2 years, and this did not work for me at all. It has been 4 months since my last surgery and my voice continues to remain strong, and clear. My family can't believe how good I sound." She will be seeing her otolaryngologist shortly and will be reporting further on his findings.

    Sustained pending further feedback

     
    Thus far, use of ART according to the "WMD-Guidelines" appears to be promising for many people. Institutional and physician research urgently needs to be done, however, both for following efficacy issues and potential side effects (e.g., could nausea and the metallic taste in some patients could point to an unknown and premature peroxidation reaction in the blood, suggesting possible conversion of inert iron to active iron in the stomach).  We know of no drug that works 100% on anything, however. Still, we appear to have a very high level of reported efficacy, more than any other adjunctive intervention that we know of.

    We didn't write the so-called "WMD-Guidelines" to give medical advice. We merely said that if people wanted to do the same thing as this writer did, an "apples to apples" comparison could be made. The bottom line is that RRP ISA has tried to ensure that the information presented in reporting was as solid and reliable as possible. All of the successes were shown and all of the failures too.  

    A few people tried ART and claimed an enormous amount of benefit from having done that. We are pleased for that--and they are too--and we sincerely hope that the otolaryngology community will pick up the ball from here. (As of this writing--June 2011--both RRP ISA and the RRPF have been waiting about four years.)