Health Category

KJRH ran a story today on Jasmine "Jazzy" Smith, an 18-year-old Oklahoman who is undergoing treatment in Florida for conditions related to Ehlers-Danlos Syndrome:

TULSA, Okla. -- An 18-year-old Oklahoma singer whose life revolved around performing is now fighting for her health after a rare connective tissue disorder left her nearly bedridden....

"When I was a dancer, cheerleader, I always dislocated things, subluxed my knees, shoulders, and then subluxed my neck," Smith said. "Then after like a few months, it just all I started regressing really badly, and I was noticing really weird brain patterns."

Doctors eventually diagnosed her with Ehlers-Danlos Syndrome, a rare connective tissue disorder that can affect nearly every system in the body.

Months ago, her health collapsed completely. She endured long hospital stays, severe head and spinal pain, multiple daily seizures, and days without sleep....

In Florida, doctors diagnosed Cervical Cranial Instability, a malformation, and Intracranial Hypertension -- conditions linked to Ehlers-Danlos Syndrome that increase brain pressure and cause regressions to systems in her body.

The news story describes it as rare, but at a prevalence of 1 in 3,100 for the most common type, hypermobile EDS (hEDS), there's a decent chance that someone in your world has Ehlers-Danlos Syndrome (a disorder affecting the formation of collagen in the body). At that prevalence, there could be around 1,300 people in Oklahoma with EDS.

The effects vary and for many are not as severe as Jazzy Smith has experienced. Because collagen is everywhere, seemingly unrelated symptoms -- joint hypermobility, headaches, tachycardia, allergic reactions to foods (mast cell activation disorder) -- may all be downstream of the same root cause, but doctors who are unaware of EDS may just try, unsuccessfully, to treat the individual symptoms.

Recently we met someone who had worked in the medical field and had EDS symptoms, like frequent shoulder dislocation and tendon rupture as a side effect of Cipro (see note below), but had never heard of EDS. There needs to be more awareness.

Tulsa is blessed with at least one doctor, David Chorley at Axis HealthCare in Bixby, who understands EDS, and there are online communities like EDSOK - Ehlers-Danlos Syndrome Oklahoma, which can help you find EDS-aware specialists and resources for learning to live with EDS. An EDS patient named Deborah Cusack has developed a nutritional approach, called the Cusack Protocol, which "focuses on improving connective tissue integrity and function through a combination of supplements targeting specific cells involved in collagen production and tissue repair.

NOTE: People with EDS are one class among several who are at risk for tendon rupture and other severe side effects from the fluoroquinolone family of antibiotics, which includes ciprofloxacin (marketed as Cipro and generic ciprofloxacin), ciprofloxacin extended-release (marketed as Cipro XR and Proquin XR), gemifloxacin (marketed as Factive), levofloxacin (marketed as Levaquin), moxifloxacin (marketed as Avelox), norfloxacin (marketed as Noroxin), and ofloxacin (marketed as Floxin).

News stories several years ago about an Oklahoma City businessman named Joe Tippens (interviewed here on KOCO in 2019) attracted my attention to the use of repurposed drugs in fighting cancer. Tippens recovered from Stage 4 small-cell lung cancer with the help of fenbendazole, an anti-parasitic drug. Tippens tells his full story on his website, mycancerstory.rocks. Tippens steadfastly refuses to monetize his experience, preferring simply to share what seems to have worked for him.

The potential of fenbendazole as an anti-cancer agent was discovered accidentally: Lab rats were given cancer to test a drug, but one group didn't develop cancer as expected; it turned out the rats who had been treated with fenbendazole as a preventative for worms did not develop cancer. A veterinary pharmaceutical researcher aware of this was diagnosed with glioblastoma and decided to treat herself with the drug and was successful. Word reached Tippens through social media, and given little hope of recovery otherwise, he decided to give it a try. Although he was part of a cancer drug trial at the same time, he was the only patient on the trial to improve significantly and reach NED, suggesting that the fenbendazole protocol made the difference. That was 9 years ago, and Joe Tippens is still with us.

That introduced me to the broader world of treating cancer by attacking the metabolism of cancer cells. Jane McLelland, a multiple-cancer survivor in the UK, wrote a book called How to Starve Cancer without Killing Yourself. This Life Extension story is a good overview of McLelland's three battles with cancer and her approach. Every cell needs energy to survive, and cancer cells use different sources of energy than healthy cells. Different cancers draw on different energy sources and can switch sources when one source is blocked. McLelland uses a "metro map" metaphor: In the London Underground, many stations can be reached by multiple lines, so to block access completely to, say, Piccadilly, you'd have to block three different lines (if memory serves). Similarly, you may need multiple approaches to block all the ways a particular kind of cancer gets energy.

The high-level description of McLelland's approach is to identify the kind of cancer you have (as genetically specific as possible), to search medical research databases for studies describing the metabolism of that cancer, and then to build a treatment protocol using medications (often inexpensive, repurposed, off-patent drugs), nutritional supplements, and diet (e.g., ketogenic) to close off those metabolic pathways. McLelland has an online course ($125) explaining the theory and its application.

Independent Medical Alliance began as the Frontline COVID-19 Critical Care (FLCCC) Alliance, investigating the use of off-label drugs, including ivermectin, to treat respiratory viruses, but they've broadened their scope to include metabolic strategies against cancer. The 2nd edition of a book on the topic,Cancer Care: Repurposed Drugs & Metabolic Interventions in Treating Cancer by Paul E. Marik, MD, FCCM, FCCP, is available for free download along with some short videos on the metabolic approach. They also have free webinars on cancer as a metabolic disease and cancer care and the role of repurposed drugs.

Generally, these approaches can be used alongside conventional treatment. Most of the drugs and supplements that have been identified are well-known and well-tolerated, but of course drug interactions and side effects have to be considered. It's thought that attacking cancer metabolism may also attack the cancer stem cells which survive conventional treatment and mutate to become treatment-resistant cancers.

While research is being done in this area, it's a slow process. There's a long path between finding that a medication affects cancer cells in vitro and determining what dose by what route, how often, for how long will deliver the necessary effect to the cancer. In the meantime, cancer patients who are out of conventional options or who want to boost the effectiveness of conventional treatments are willing to try, even if all the science hasn't been done to nail down a metabolic treatment standard-of-care for a particular cancer.

There are a number of Facebook groups on the topic, where people discuss what they are trying and how it's working. You can find groups officially connected with Joe Tippens and Jane McLelland through their website links above. Their groups are a more disciplined and seem to have more useful information than others I've found, and you have to watch out for imposter groups and hucksters, so I'd urge you to go through their websites to find community on this issue.

There are so many opinions and so many variations and adaptations of protocols, I'd be inclined, were I facing a cancer diagnosis, to find advice from someone studying this area full-time, as they're more likely to be developing clinical experience in what works and what doesn't. Clinics have arisen to help patients sift through all the research and build a protocol that has at least a theoretical chance of working. Having someone to order and track diagnostic tests would be important, too. I don't know enough to make any endorsements, but through Jane McLelland's website, I'm aware of Care Oncology Clinic which has a presence in the UK and the US. Canadian oncologist William Makis does telemedicine consultation and has a presence on Substack and X/Twitter, where he can be contacted. I'll add others here as I become aware of them.

There does seem to be a prerequisite level of constitutional health needed to make use of this approach. If you've already lost your appetite and your strength, you'll have a hard time following a protocol that involves coordinating medications and diet. If your liver is already significantly compromised, you may not be able to tolerate the protocol. I've had loved ones who were too far gone when the cancer was discovered or too far gone when they learned about this possibility to be able to make use of this approach. One of my motivations in posting this is to raise awareness so that more people have the opportunity to pursue metabolic treatment as soon as they learn they have cancer.

Prevention is important, too: Get the rest, exercise, and nutrition (especially Vitamin D) you need to keep your immune system in good shape, maintain a healthy weight, and be watchful for early signs of cancer.

MORE: Epoch Times recently spoke to Joe Tippens and Dr. William Makis on the use of repurposed anti-parasitic drugs against cancer. The article lists four mechanisms which may explain how these drugs are effective against cancer:

• Boosting Protein Called p53: The tumor suppressor protein p53 helps kill cancer cells.
• Blocking Glucose Uptake: Cancer cells depend on sugar for energy and growth.
• Disrupting Microtubules: These cellular structures are crucial for cell division of cancer cells.
• Affecting Mitochondrial Function: Depletes cellular energy, increases oxidative stress, and blocks a critical pathway that regulates cell growth of cancer cells.