Consultants & Bloggers That Up-sell & More
With the exception of one other blog, Hurt by Levaquin, run by my fellow FQ friend John Fratti, I have been online longer than the rest. I have put thousands of hours into researching Fluoroquinolone toxicity, have worked with researchers at three different universities, have helped co-author academic papers, contributed data to several more, and have interacted with the FDA in several different capacities. I have a good understanding of the current academic knowledge that is available on Fluoroquinolone Toxicity and how this hellish synthetic DNA altering molecule functions. However, I’m not a medical doctor, and I certainly don’t try to play one on the Internet. I am just trying to figure Fluoroquinolone Toxicity out, since most medical doctors won’t touch it with a 10 foot pole.
The fact that the medical community has ignored Fluoroquinolone Toxicity has left a void that has become filled with psuedo-experts. These psuedo-experts also run the gamut. From selling bogus medical appliances to aligning celestial star fields they often waste precious time and money. There is no secret cure discovered by a ousted Russian scientist or a Monk living on a Tibetan mountaintop that just happen to be imparted to a person by happenstance.
Bottom line, if it sounds to good to be true, it probably is. If your ‘spidey sense’ is telling you that some doesn’t seem right, it probably isn’t.
Many times desperate people are unsuspecting and easily victimized. They come across blogs or websites that are flooded with pseudo-scientific terminology designed to generate web traffic back to the website for marketing e-books, links to lawyers or law groups, and/or offers to sell something. Although some may find this acceptable, knowing what information is out there, I believe it is tantamount to victimization. It takes away from the tragedy of delegitimizes the plight we face. Please, if you have already fallen prey to FQ toxicity, use extreme caution if deciding to patronize a ‘consultant’.
This excerpt is from a post comment I received from a doctor looking for information on FQ Toxicity:
“Although David and I may disagree on some aspects of Fluoroquinolone Toxicity, at least his site is clearly written by some who is not pretending to be something else. I am afraid there are quinolone related websites that masquerade as offering legitimate science, we assume, to people looking for factual science answers. Most of the articles seem to be nothing more than a thinly veiled promotion of the author and are devoid of anything that can be considered basic scientific journalism. Because of this I can surmise that many of my esteemed colleagues who are led into a legitimate search, by having to wade through, and take the time to dismiss this conjecture and pseudo-science that is parading as science, ironically walk away disheartened not enlightened. “
Also read my cautionary tale on Internet Health Consultants.
Genetic Testing Companies
Although I am not against genetic testing by any means, as a matter of fact I love researching genetics and that research has played an important role in my life and in the lives of some people that I hold dear, I have had several complaints given to my from floxies about the level of service from some genetic testing companies:
MEDomics http://www.medomics.com My personal opinion is to NOT patronize them. I have received several complaints against MEDomics that ranged from delays, terrible customer service, ambiguous billing, and poorly interpreted results. Seriously, I have received more complaints than praises about this company.
I received a couple of complaints about poor service from Courtagen at http://www.courtagen.com/
GeneDX https://www.genedx.com Believe it or not I have interacted with all three of the genetic companies listed here in one fashion or another. GeneDX is the one that produced the best results, worked well with my doctor, and (a big plus) worked well with my insurance company. If you can use them, I highly recommend their services. I have not received any complaints about GeneDX.
It pays to do your own research if you are patronizing companies that perform such services, unless your doctor is guiding you in this endeavor.
Please keep in mind that genetic testing companies cannot quantify genetic damage from the FQs. Having said that, Floxies have used mitochondrial (genetic testing) to identify genes that can be pathogenic both nuclear and mitochondrial and that may have been switched on by the FQ’s. This is the wave of the future and I hope to write an article soon about what it can and cannot do.
I still recommend getting your basic genetics from 23andMe. Since your genetics do not change, you can use the genetic information obtained from 23andMe for a variety of applications. Sure 23andMe is $100*, but compared to big bucks charged by many gene sequencing companies, that is often not covered by insurance, it is a pretty good deal if you have the money.
Dr. Ben Lynch who I respect also comments on 23andMe in this post
Be advised that Dr. Lynch does not personally recommend using MTHFR Support, Livewello, Nutrahacker or Genetic Genie because he disagrees about what SNPs they are calling as clinically-relevant in addition he does not agree with the recommendations they provide.
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.”
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.
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. I rest my case. I consider the who debacle with the QVF closed.
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 pharmaceuticals 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 website online are nothing more than front for collecting data for pharmaceutical companies (8).
Some examples are WEGO and Patient’s Like Me.
There are blogs in the FQ realm that collect data for sale. This is not one of them!
Being floxed makes people vulnerable. It 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 FQ 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 the potential is good. Most of these webpages will have interspersed and margin advertising encouraging 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 FQ 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 and the primary plaintiffs. 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 FQ 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 FQ’s, please consult a legal expert of which I am not.
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.
* price for 23andMe can vary.