Intro

If you are new to this plight, this is especially for you.   It is long page but please take your time and read it.  It may save you some headaches down the road. Please.

I get it…your scared, in pain, and suffering.  You are looking for help and you want it right now. You don’t want to hear anything negative, you just want to get better.  

Believe me, I, and many, many others have been there. During these times you are often vulnerable and can easily be taken advantage of and that is the main reason I created this page.  When I was thrust into the Fluoroquinolone debacle years ago the Internet was still fairly young.  Heck, Facebook wasn’t even a ‘thing’ yet, there was only one large Yahoo email group, let alone Instagram, TikTok, WhatsApp and the like.  The Fluoroquinolone community was untouched, for the most part, by pyramid schemes, MLM, and those with less than stellar intentions looking for either notoriety and profit.  With the rise of the Internet as the ‘go to’ source for all things medical, there has been a rise in victimization, or at the very least those wanting to make a ‘quick buck’ at someone else’s expense. I spent over thirty years in the field of law enforcement and I generally take a dim view of people getting victimized….by anyone.  As a result, you will find that I am very adamant and non-apologetic about it. 

Buyer Beware

The ugly truth is that Fluoroquinolone toxicity destroys lives and causes undue hardship on individuals and families.  Often times people are left struggling financially, putting some in dire straits with very little means to support themselves. During these times you are often very vulnerable and can easily be taken advantage of emotionally and financially. 

Warning

Call me cynical, call me whatever… Yes, I know there are good people out there, many wanting to help, and you would think that those claiming to have shared experiences would somehow level the playing field, right?  Well…not necessarily.   One thing I have learned is that just because someone has supposedly shared the same experience with you, doesn’t make their motives pure.  Again, you may call me cynical or overly suspicious; a reality shaped by my career, but the truth is, there were some people who were naughty *before* and they remain naughty after. 

Maybe its because I run this website and have to immerse myself in the deeper end of the pool, but I have seen some individuals, who for whatever reasons, have a deep seated narcissist tendency to be the center of attention.  Some have simple financial gain as their motive, while others seek identity theft, and yet others harbor deep seated psychological pathologies that motivate them to meddle in other’s affairs (seriously).  No matter what the need, the internet facilitates these behaviors. 

My warning to you is to please, be careful, its a jungle out there!  Test all the waters before diving in! 

“Medical Professionals”

Here I am not talking about your average run-of-the-mill doctor who doesn’t know anything about Fluoroquinolones and wouldn’t know what Fluoroquinolone Toxicity is even if it came up and slapped him in the face.  No, I am talking about those who claim to be able to treat Fluoroquinolone Toxicity. Despite attractive websites, amazing claims, rave reviews or wonderful credentials, always double check, and check again those claiming to be able to treat Fluoroquinolone Toxicity. Again, this is not to disparage the legit medical professionals that are doing their level best to figure out and help those suffering from symptoms from Fluoroquinolone Toxicity.  Despite this, there are “medical professionals” that have operate in a somewhat ambiguous area whose intentions are equally ambiguous. They can be very hard to discern, especially when your vulnerable. These “medical professionals” run the gamut from:

  • Doctors who claimed to have suffered from Fluoroquinolone Toxicity and were a ‘death’s door,’ their bodies ‘broken,’ but have cured themselves and have developed a proprietary treatment program. They now charge exorbitant fees to likewise broken, beleaguered people supposedly to ‘treat’ Fluoroquinolone Toxicity.

  • Bloggers who also claimed to be have suffered from Fluoroquinolone Toxicity and have now found a ‘niche’ Internet market to  self-promote and up-sell eBooks.

  • The notorious “Internet health consultants” that should be selling used cars (not to disparage car salesmen because I actually have a much higher opinion of them).

  • The multi level marketers peddling proprietary supplements, essential oils, or other ‘health’ related items.  Some of the products may be helpful for certain things but their main goal is to separate you from your money and enlist you in their spiderweb of ‘sales.’

This is just a few, in a list that is long and varied. 

Again, don’t misunderstand me, there are good doctors interspersed within the bad and obviously, people are perfectly free to spend their money where they choose, just remember that you can be very vulnerable when your are desperate from being floxed. Desperation often drives one to throw common sense out the window.  I know that you probably don’t want to hear this, but there is no quick fix or universal cure for Fluoroquinolone Toxicity.  That doesn’t mean you won’t heal.  Its just that there is no universal, or even routinely recognized treatment for Fluoroquinolone Toxicity, if it were so, there would be no people suffering from it or there would be no social media groups with thousands of members all looking for treatments and justice for their injuries.

Over the last decade I have amassed a collection of stories based on both personal experience and information from other people who I consider trustworthy sources about claims and services that are questionable.  I understand that the value one places on information and levels of healing is quite subjective and it is a tenuous argument.  With this in mind, this information is placed here as cautionary information only, so individuals can weigh the cost/benefit ratio, especially if you have limited resources and finances.

It is my personal opinion based that you should exercise caution in the following areas:

Doctors

Like I mentioned above, there are some really good doctors out there and some really bad doctors out there.  There are people who are some that are ‘playing doctor’ that shouldn’t be.  I could write a book on the amount of questionable services that people have told me about. Instead of actually pointing fingers, I will make a brief, not all inclusive, list of  what I consider warning signs:

  • Big Red Flag The doctor wants you to sign a Non-disclosure agreement (NDA) stopping you from sharing your opinion about the doctor, the treatment, or any other aspect of your experience (1, 2).

    • Personally, if I saw this I would run for the hills. Despite the fact that he/she may have loyal followers that claim he/she is the greatest thing since sliced bread, you, as a patient, have the right to discuss your experience with whomever you please.   Forcing you to be quiet or attempting to control your freedom of expression under the threat of a lawsuit or other ‘actions’ is both unethical and unprofessional.  Can you trust “good” reviews if the “bad” or mediocre reviews are banned or silenced? 
  • Big Red Flag  The doctor will not tell you ‘what’ is in the proprietary treatments you are receiving. 

    • Holy Crap Batman! This is not an apothecary in the dark ages.  Do not let a doctor put anything in your body that he/she is not fully transparent about.  This ‘wreaks’ of unscrupulous behavior that indicates the doctor is a huckster or is a self-serving narcissist who is more concerned about the secret of their ‘treatment’ than your health.   Never blindly trust a medical professional.  Always question everything until you are fully satisfied with the answer.  Blindly trusting and not questioning everything got some of us in this predicament in the first place!
  • Big Yellow Flag. The doctors is willing to charge you for services and ‘treatments’ that you have no means or way of repaying. 

    • In other words, you are poor and destitute, but the doctor is still willing to charge you a boatload of money even if you can’t afford the inflated prices. Many times, these doctors could care less if  you to mortgage your home or go into massive debt on a gamble that could burden you or your family with unpayable debt.  

Websites

http://fqresearch.org

The URL was originally owned by the now defunct Fluoroquinolone Toxicity Research Foundation (which, for its time, had very helpful information, run by a very knowledgeable man).  This URL has since been purchased and is NO LONGER associated with the individual who ran the Fluoroquinolone Toxicity Research Foundation.  The new website is interspersed with some scientific facts (yes, you may learn a thing or two) but basically is designed up-sell the “Fluoroquinolone Toxicity Solution Ebook.” 

http://www.fqtoxicity.com/

Sell site for the “Fluoroquinolone Toxicity Solution Ebook”

eBooks, Books or other Publications

Fluoroquinolone Toxicity Solution Ebook

There is NO, solution, cure, or even reliable treatment that I am aware of.  Please don’t misinterpret me, I am not trying to say there is no hope of healing for people.  Healing from Fluoroquinolone toxicity is such an individual thing.   I have a problem with the name. To me, this is akin to marketing a solution for cancer or something of the kind.

Nevertheless, I legitimately purchased the book in the past because I was curious as to what it contained and I read it with an open mind. After reading it, I kept my opinions to myself for quite some time, even asking other Floxies, who had also purchased the eBook, about their opinions as well.   Again, my main beef is it is being marketed as a ‘solution.’  This clouds the bias, motives, and the actual understanding of the authors about Fluoroquinolone toxicity. 

“Fluoroquinolone Toxicity Solution eBook” basically covers optimizing Magnesium, Vitamin D and certain other vitamins and minerals, in addition to some basic information on supplements, exercises, and general health.  Although making sure that one optimizes their vitamins and minerals is a good thing, it in no way is a ‘solution’ to the problem of Fluoroquinolone toxicity and in my opinion, it is frankly offensive to market it as such.  Besides, if optimizing Magnesium, Vitamin D and certain other vitamins and minerals cures your FQAD then you weren’t floxed in the first place! Sure, it is possible that you may learn some basic information, but to pay almost $40.00 for information that is available from numerous different places on the net is, in my opinion, not worth it.

Again, the information in this book is a compendium of information available in many of the Facebook support group files sections and on websites that talk about optimizing certain supplements for better health.  You can also get a lot of info for free by reading the “What Help’s” page on this website, contributed by floxies for floxies, updated regularly, and it won’t cost you a dime!  Sure I can see charging a few bucks for compiling data, but to compile basic data and marketing it as a “solution” for $40 to $50 bucks is outrageous.   My opinion is to save your money, especially if your budget is tight.

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 (Since 2009).  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, and they contribute to the downplay the travesty of the situation.   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 something 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 Fluoroquinolone Toxicity:

“Although David and I may disagree on some aspects of Fluoroquinolone Toxicity, at least his site is clearly written by someone 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. (* price for 23andMe can vary.)

Dr. Ben Lynch who I respect also comments on 23andMe in this post:

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 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 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.  This is blog is not one of them!  Although I collect data, it is used to help other people, 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.

Legal Clickbait

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.

  Case Closed

Ubiome

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.

In Conclusion

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.

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