Naegleria fowleri: ‘Miltefosine is not the cure-all’ says ‘Kyle Cares’ founder
There has been a lot to cheer about when it comes to the treatment of parasitic meningitis caused by the amoeba, Naegleria fowleri, with the investigational drug Miltefosine, as the recent news reports on the Kali Hardig case show.
However, one mother who lost a child to this deadly amoeba almost exactly three years ago today, warns that Miltefosine is not the “cure-all” some media reportsmake it to be.
Mother of Kyle Lewis and founder of the Kyle Lewis Amoeba Awareness Foundation, Julie Lewis, posted the following on the Kyle Gracin Lewis – Amoeba Awareness Facebook page on Aug.23:
Miltefosine, a new investigational drug that is being misinterpreted in the media!
There has been speculation that this new drug is the cure-all for fighting this horrible amoeba. We can still say that timing is extremely critical when it comes to this amoeba AND the damage it causes. Miltefosine is NOT A LIFE SAVER. Naegleria Fowleri IS destructive and deadly.
Recent articles across the internet and tv stations are reporting 2 survivors this summer…we are NOT THERE YET. Kali is still fighting hard against the brain damage this horrendous parasite did to her, and she is a survivor. Zac’s family has said on facebook posts that the doctors are looking for brain activity…yes the amoeba is gone, but ‘extensive damage was done to his brain’ and they are praying for ‘any form of activity to come from his brain’.
The following day, Florida boy, Zachary Reyna lost his battle with the “brain-eating amoeba”.
Earlier this week, I asked Julie Lewis about her Facebook post.
“There were many reports coming out saying there were 2 survivors and this miltefosine was the cure. that was not the case. Naegleria fowleri is destructive and deadly and timing is very critical. The miltefosine, in time, killed the amoeba, but not before some brain damage occurred, Lewis said.
“There were many factors and variables both cases had to deal with and as we know, the 2 cases had different outcomes. So until we get the full story of both, and the CDC and doctors can determine a more accurate procedure…miltefosine itself is not the “cure-all”.”
CBS News reported Aug. 23 that Dr. Jennifer Cope with the CDC said the CDC was able to get the drug to Kali Hardig within 24 hours, while Zachary Reyna received it in about seven hours.
Related story: Neti pots, Naegleria and you
When asked about the speed of getting the drug to the patient from the CDC, Lewis said, “We are still curious and anxious to hear what the CDC teams finds when it comes to Kali’s case because we are wondering if she had the less ‘virulent’ case of NF like the 1970’s case was suspected to have.
“As for the miltefosine stored at CDC, we were actually told that Kyle Cares $10000 donation to them helped funding for getting the miltefosine to other cases quicker from time of request than it was delivered for Kali’s case.”
Of course Mrs. Lewis is talking about the US (California) survivor of Naegleria fowleri in 1978 where it has been suggested that the survivor’s strain of Naegleria fowleri was less virulent, which contributed to the patient’s recovery. In laboratory experiments, the California survivor’s strain did not cause damage to cells as rapidly as other strains, suggesting that it is less virulent than strains recovered from other fatal infections.
LISTEN: CDC expert, Dr. Jennifer Cope talks parasitic meningitis and Naegleria fowleri
According to a CDC Health Alert Network Infoservice issued Aug.23, “CDC now has an expanded access investigational new drug (IND) protocol in effect with the Food and Drug Administration (FDA) to make miltefosine available directly from CDC to clinicians for treatment of free-living ameba (FLA) infections in the United States.”
Miltefosine is a drug used to treat leishmaniasis and also has shown in vitro activity against FLA, but as an investigational drug, it has not been readily available in the United States. With CDC assistance, however, miltefosine has been administered in combination with other drugs since 2009 for FLA infections as single-patient emergency use with permission from the Food and Drug Administration. Although the number of Balmuthia mandrillaris and Acanthamoeba species infections treated with a miltefosine-containing regimen is small, it appears that a miltefosine-containing treatment regimen does offer a survival advantage for these usually fatal infections.
Lewis ended by saying, “Kyle Cares is excited about the miltefosine, but awareness, prevention, and a rapid diagnosis still have to come first.”
Angels of Amoeba Awareness
Image/Kyle Gracin Lewis – Amoeba Awareness Facebook page
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