ME Letter July 2018

This Month’s Contents

Ampligen Is Once Again Available

On June 27, 2018 Hemispherx Biopharma, Inc. – producer of Ampligen/rintatolimod — announced the immediate expansion of its “Treatment Protocol/Expanded Access Programs” for ME/CFS patients in the USA known as AMP-511. This is the first time new enrollments have been accepted in more than a year due to a shortage of the drug. This opportunity to expand the AMP-511 program is based on the successful completion of a new manufacturing initiative to produce sufficient quantities of Ampligen to support new enrollees in this FDA-approved program. Up to ten new patients will be accepted. Additional enrollees will be considered as supplies of Ampligen expand.

While there is no cure for Chronic Fatigue Syndrome, Ampligen is an experimental anti-viral and immune modulatory drug that has had some success in the treatment of ME/CFS, based on the results of several published medical studies. Dr. Lapp received FDA approval to administer the drug in 1997, and is currently the only provider worldwide.

Ampligen is only available on a “compassionate care” basis, which means that individuals must apply, meet program requirements, and bear the cost of drug therapy. Some insurers, including Medicare and Medicaid, will not cover investigational therapies. Since the drug is administered intravenously twice weekly for at least 6 to 12 months, it is recommended that subjects take up residence in the Charlotte area. While many patients have come from the Carolinas, we have had subjects from the Western US, Canada, Europe, and Scandinavia as well.

For more details about the Ampligen (AMP-511) Program see our website at drlapp.com/research and click on the “Ampligen” tab, or call our Research Coordinator, Wendy Springs at 704 543 9748.

New Non-Pharmacological Treatment for Fibropain

Vital Motion has developed a new technology that may revolutionize the management of fibropain, especially in individuals with low blood pressure or orthostatic hypotension. This device triggers a reflex in the soleus muscle (calf) that in turn provides more venous blood return to the heart, and improves circulation. In other words, more blood and oxygen gets to the muscles. When used for just 15 minutes twice daily, this new device — called the Hummingbird – has been capable of reducing FM symptoms in controlled studies performed by Eric Hiester, MD. \

The Hummingbird is controlled using an app on your own smart phone to increase or decrease the intensity of the stimulation. Hummingbird units are available for a modest price of $395 on a 60 day trial basis and a money back guarantee, so there is no obligation. We hope that many of our patients with fibropain (and especially those with low blood pressure issues) will try the Hummingbird as an alternative to medication.

David Lovenham and Terry Bradley, developers of the Hummingbird, recently visited our office and demonstrated the unit. We were impressed with their candor, integrity, and enthusiasm about the product. We found them quite cordial and very willing to work with our patients.

For more information feel free to contact patient advocate Nancy McGrory at 610 952 2595. To order a Hummingbird, call 888 885 6686 or go to www.vitalmotion.com.

Drat That Opioid Epidemic! Big Concerns for Our Patients and Everybody

The so-called opioid epidemic seems to have become the topic of every talk show and magazine these days, ever since the CDC released its October recommendations to reduce the amount of narcotic use and to avoid using benzodiazepines (and Soma/carisoprodol) along with your pain medications. Oh how times change: just a decade ago these medications were recommended to help improve pain control! Now they are seen as the “bad boys” that increase adverse effects and the risk of overdose. Unfortunately, the politicians have felt it necessary to do something, and that something is to restrict everybody’s access to necessary pain control.

We continue to have big concerns for Persons with Fibropain who need narcotic medications. We feel that future regulations will get stricter and stricter. Possibilities include monthly face-to-face checks; no prescriptions across state lines; prescriptions only from state-approved pain specialists (of whom there are very few); and perhaps no one will be prescribed more than 90 morphine equivalents, which equals:
90mg of morphine total per day
90mg of hydrocodone (Lortab, Vicodin) per day
60mg of oxycodone (Percocet, OxyContin) per day
13mg of hydromorphone (Dilaudid) per day
12mg of methadone per day
25 mcg of fentanyl; (Duragesic) every 3 days
300mg of tapentadol (Nucynta) daily
30mg of oxymorphone (Opana) daily

Already some pharmacies are refusing to fill both narcotics and benzodiazepines for the same patient, so those individuals who need Klonopin for restless legs or temazepam for sleep inititation may have to choose that or their narcotic pain medication in the future – but not both.

What can be done? If you are taking narcotic medications, consider these alternatives:

Establish with a local pain specialist NOW so that when stricter regulations come you won’t be scrabbling for someone to help!
Reduce your use of opioids (narcotics) to less than 90 morphine milligram equivalents per day;
Consider non-opioid medications that control pain such as Lyrica/pregabalin, Cymbalta/duloxetine, Savella/milnacipran, Neurontin/gabapentin, or Low Dose Naltrexone. Lyrica, Cymbalta, and Savella are FDA-approved for the treatment of fibromyalgia pain;
Physical modalities such as physical therapy, myofascial release, massage therapy, chiropractic, acupuncture, TENS units;
Non-pharmacological techniques to reduce pain such as rest, heat, cool packs, liniments (such as IcyHot, BenGay, Biofreeze, Blue Emu, Aspercream , Tiger Balm and others), tub soaks, Epsom baths;
If you are not sure what to do, please discuss it with us at your next office visit.

Where To Turn When You Need Help With Virtually Anything

I was recently pointed to one the best websites ever for those of you who are disabled and in need of resources. It is somewhat amusingly called “How To Have A Great Disabled Life.”
With tongue in cheek, the author describes his/her website as:

“A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis (sometimes called “Chronic Fatigue Syndrome”). If you are not lucky enough to have ME or CFS, you are still welcome to use this guide!”

This website provides wonderful advice and special links for those who need to go on Social Security or other kinds of disability; or perhaps you need food delivered to your home, transportation, or you don’t know the ins and outs of getting Medicaid? Can’t figure out Medicare or Student Loans? There’s a section on those topics. A perennial question in our office is “how do I get a scooter or wheelchair” and there is great advice for those issues. He/she discusses living on SSI, being homebound, poverty … you name it! In fact the only link I couldn’t get to work was “About Us: the Authors & Artists.” What a shame. I wanted to thank them for a job well done.

Check it out yourself at: https://howtogeton.wordpress.com

Confirm Your Appointment!

Be sure to confirm your appointment when you receive that reminder call from Pam or one of the other HHC staff members. Because appointment time is so valued, it is our policy to cancel an appointment and reschedule someone else if we have not heard back from you within 24 hours of your appointment.

In between ME-Letters, visit our Facebook site or private Facebook Chat Room. Just search for “Hunter-Hopkins” at www.facebook.com and your options will pop up.

Hunter-Hopkins Center, PLLC