Stem Cell Treatments
The unfortunate reality is this; I have now heard from a handful of genuine severely floxed folks who have gotten much worse after stem cell therapy. A couple of folks initially had what they thought was a systemic benefit, only to see that perceived benefit disappear and then some their chronic symptoms got much worse. Although I don’t pretend to understand the mechanism of temporary improvement unless it was a placebo effect, I can make several educated guesses as to why it would be negative from a genetic basis.
To be fair, I have talked to some folks who have had stem cells injected locally, such as a knee or shoulder joint, to solve local problems that claim to have had some improvement, but no systemic body-wide ‘reset’ or great improvement has been reported to me. I have heard hearsay of folks claiming miracle cures with Stem cells, and when I did some further checking the veracity of their claims were called into question as was their ‘perceived’ level of floxing. Be careful it’s a jungle out there.
I have learned that stem cells are different, depending on their locale in the body so promises of system improvements can be misleading.
In addition, I have also corresponded with some that have come away feeling victimized after spending $25,000 for stem cells treatment that did not produce viable results.
Listen, I do get it and I am not without compassion because people are scared, in pain, and suffering. If I knew for a fact that stem cells would help me, I would raise money and try them myself (non-embryonic). However, I have heard it time and time again, people get desperate and look for help and they want it right now. They don’t want to hear anything negative, they just want to get better. Believe me, I, and many, many others have been there. The bad news is that people are often vulnerable during these times and can easily be taken advantage of, and in the area of stem cells it would be easy to be taken advantage of. My advice is to read this article from the International Society for Stem Cell Research entitled Nine Things To Know About Stem Cell Treatments.
Also here is a recent (2019) New York Times Article.
Pharmaceutical Data Mining Companies
Pharmaceutical data mining involves compiling and analyzing medical information such as patients’ prescription history, dosage, medication interactions, and physicians’ prescription habits. The data, trends, and patterns are then sold to pharmaceutical companies to allow them to better target physicians, improve their sales and marketing tactics, and provide them with knowledge on how the prescribed population is handling their drug. Many benevolent sounding patient oriented websites online are nothing more than a front for collecting data for pharmaceutical companies (8).
Some examples are WEGO and Patient’s Like Me.
Yes, there are blogs (websites) in the Fluoroquinolone realm that collect your personal data for sale if you interact with them by taking their surveys. This is blog is not one of them! Although I collect data, it is used to help other floxed people and it will, never sold to data mining companies. If I collect data for a researcher it will be clearly announced what the data is for and even then, I only work with researchers that pass the muster so to speak, no pharmaceutical shills are allowed.
Being floxed makes people vulnerable. Its an attempt to get help and communicate with others be careful where you share your information on-line. Please do your research to protect yourselves and your loved one’s medical data.
Using a catchy title and a page peppered with Fluoroquinolone facts they lure potential clients to take action. Many time these pages use URL’s and titles that convey a sense of security or label themselves as a pharmaceutical watchdog groups, when in reality they are nothing more than class action lawyers looking for plaintiffs.
Now don’t get me wrong. There are legitimate pharmaceutical watchdog groups that do a meritorious job of trying to police drug safety. But unfortunately there are also lawyer groups that masquerade as the same trying to cast a wide net to reel-in low payout clients.
The internet does a wonderful job, if used properly, to get prospective customers to come to you. This type of marketing can reap big profits while having low costs, so their cost/reward potential is very good. Most of these webpages will have interspersed and margin advertising that encourages you to call or to chat with a representative about ‘your’ case.
Many times these websites get you daydreaming. For a moment visions of big payoffs start bouncing around in your head. I understand as I have fallen prey to the tactic myself.
But not so fast! Snap yourself back to reality. Class-action lawsuits rarely, and I mean very rarely, end with significant payouts to the average Fluoroquinolone victim, that it is if you even qualify in the first place. In fact, in most cases the only two sets of participants that reap any real rewards are the attorneys (which reap big profits- always) and the primary plaintiffs (who can reap a mild to moderate profit). Most of the rest of the participants receive a ‘pittance’ of what their actual damages are worth.
Mary Massaron Ross, president-elect of the DRI “Voice of the Defense Bar,” an association of attorneys and in-house counsel called to represent corporations mired in class-action suits says the following, “We live in a litigious society, and there is a huge benefit to lawyers bringing class actions because of the enormous fees that they can be awarded as part of the settlement or if they proceed to a victory.“
That’s not all, she says. Class members receive tiny amounts of money, while the true cost of the lawsuit is often passed along to — you guessed it — the consumer.
I am all about holding those who have perpetrated the Fluoroquinolone travesty on the world accountable, however being in a lawsuit where you become the victim again and receive a ‘pittance’ for your damage is wrong. That is why I refuse all requests from these shady groups to advertise on my website. If you have any questions about whether to participate in a legal action regarding the Fluoroquinolones please consult a unbiased third legal expert for advice, of which I am not.
uBiome uses machine learning, artificial intelligence, and advanced statistical techniques, as well as our patented precision sequencing™ process to analyze the microbes in and on your body. Sounds great right? Yes, well in theory. There may be nothing wrong with the technical expertise or methods, but their customer service, according to many comments I have received, is less than stellar. If you have had a great experience with them, fantastic. Just know that I have received complaints of undelivered results and no satisfaction when dealing with their customer support. If money is tight, I would probably pass on this one. Besides, unless you know what you are doing with the data it probably will not result it any actionable treatment information.
Ubiome Update: On Friday, April 26, 2019, federal authorities, pursuant to a search warrant, searched uBiome’s facilities in San Francisco. Evidently this is part of an ongoing investigation into billing practices. The company’s founders, Jessica Richman and Zac Apte, are on “administrative leave.”
I Believe the company is now defunct, unfortunately after bilking several people in the FQ community with non-delivery of results.
Quinolone Vigilance Foundation (QVF)
Although I, along with a handful of other floxies, started the QVF with the best intentions, I, and the original group who founded the QVF are no longer involved in the organization and I do not support the QVF. The organization in my opinion has drifted dramatically from its original intent. I have written an article that expresses my main reasons for my opinions. It can be read here.
Summer 2017: I made several attempts to reach out to a prominent member of the QVF to have a conversation about bringing the settling our differences and bringing the community together. Those attempts were rejected.
2018: I learned that the director of the QVF, at the time of this writing, was hired by the FDA, the public information can be found here. This helped confirm my suspicions all along that I had, I rest my case. I consider the whole debacle with the QVF closed.
With the advent of the Internet and increasing web technology it is harder to gauge motives of the entities behind websites. Although many websites may appear well-intentioned or informative, their motives may be to sell, collected data for other entities, or basically increase web traffic in order to make money through increased traffic. Now I know that selling is part and parcel with the Internet but I have a dubious opinion of any medical information website that engages in such activity dealing with the fluoroquinolone toxicity travesty. Why? Because, like I said above, I have seen this travesty destroy too many lives, families, and careers, so I am very protective of people being victimized further whether it be financially or emotionally. In my opinion, it amounts to fleecing already victimized individuals. You can read about my pledge here.