Buyer Beware

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. The bad news is that you are often vulnerable during these times and can easily be taken advantage of.  That is the reason I created this page.  When I got involved years ago the Internet was still fairly young.  The Fluoroquinolone community was untouched, for the most part, by those with less than stellar intentions, or those driven by profit, fortune and to a lesser extent notoriety.  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.  You will find that I am very adamant and non-apologetic about it.  Fluoroquinolone toxicity destroys lives and causes undue hardship on individuals and families.  Often times people are left buyer_bewarestruggling financially, putting some in dire straights with very little means to support themselves.

Be careful out there!  From individuals who claimed to be have been mildly floxed and have now found a niche Internet market to Internet consultants that should be selling used cars (not to disparage car salesmen because I actually have a much higher opinion of them), multi level marketing peddling proprietary supplements to essential oils, the list of possible hucksters and the complaints I have received has become lengthy quite varied.

Don’t misunderstand me, there is good 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 floxed.  I know that you probably don’t want to hear this, but there is no sure fire cure or quick fix for FQ Toxicity.  If it were there would be no people suffering from it or there would not be Facebook groups with thousands of members all looking for justice and treatment.

Over the last decade or so I have amassed via personal experience, comments and complaints from people who I consider trustworthy sources about certain items or services that are questionable. The value one places on information is quite subjective and is a tenuous argument I understand and with this in mind, this information is placed here as cautionary information only, so individuals can weigh the cost/benefit ratio, especially with limited resources.

It is my personal opinion based on my experience or information given to me by others to me to use caution with the following:

Websites

http://fqresearch.org

The URL was originally owned by the now defunct Fluoroquinolone Toxicity Research Foundation (which had very helpful information and a archive of their website can be found here). 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 scientific facts and is highly SEO’d to basically up-sell the expensive “Fluoroquinolone Toxicity Solution Ebook.” I legitimately purchased the book in the past because I was curious as to what it contained. After reading it, it is my opinion, and the opinion of some others who have purchased the e-book and shared their feelings with me, that it is nothing more than a collection of community acquired knowledge. I am always very leery of marketing anything as a solution.

Also, I would also be very suspect of any website that links to this book to offer affiliate sales, no matter how scientific they appear.

http://www.fqtoxicity.com/

Sell site for the “Fluoroquinolone Toxicity Solution Ebook”

Fluoroquinolone Toxicity Solution Ebook

There is NO solution, that I am aware of.  Please don’t misinterpret my wording, I am not trying to say there is no hope or healing for people.  Healing from FQ toxicity is such an individual thing. To me, this is akin to marketing a solution for cancer or diabetes. “Fluoroquinolone Toxicity Solution Ebook” basically covers optimizing certain vitamins and minerals, in addition to some basic information on supplements, exercises, and general health.  It in no way is a ‘solution’ to the problem of FQ toxicity and in my opinion, it is frankly offensive to market it as such.  Oh sure, someone 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, outrageous.

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, and it won’t cost you a dime!  Sure I can see charging a couple of bucks for compiling data, but to compile basic data and sell it for $40 to $50 bucks is outrageous.   My opinion is to save your money especially if your budget is tight.

Consultants & Bloggers That Sell

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 FQ toxicity and have worked with researchers at three different universities.  I have a good understanding of the current level of knowledge that is available on FQ toxicity.  However, I’m not a doctor, and I certainly don’t try to play one on the internet. I am just trying to figure fluoroquinolone toxicity out, since most doctors won’t touch it with a 10 foot pole.   The reason I am saying this is not to be aggrandizing, tout or flaunt myself at all, on the contrary.  It is to reiterate that despite my knowledge, I do not charge for the knowledge that I have acquired and I find it atrocious that anyone, other than what constitutes a professional doctor/patient relationship, would charge for such information.

As I have written before, floxing devastates and victimizes individuals, and since I am privy to the fact that there is no secret or inside information on treatment, procedures, or cures, individuals charging for consultation is, in my opinion, highway robbery and unacceptable.   Many times desperate people are unsuspecting and easily victimized. They come across highly SEO’d blogs  where the author has literally flooded the Internet with pseudo-scientific web pages designed to generate web traffic back to the website.  There, the author markets e-books, links to lawyers or law groups, and/or offers to consult or ‘sell their time’ to help synthesize FQ information. Although some may find this acceptable, knowing what information is out there, I believe it is tantamount to victimization.  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 I may disagree with some of David’s conclusions, at least this site is clearly written by some who is not pretending to be something else. I am afraid several of the quinolone related websites 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 too to NOT patronize them.  I have received several complaints against MEDomics that ranged from delays, terrible customer service, ambiguous billing, and poorly interpreted results.

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 patronized all three of the genetic companies listed here. 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.

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 $15,000 dollars 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

23andMe v5 Chip: What You Need to Know

https://www.drbenlynch.com/23andme-v5-chip/

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

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.

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 community together.  Those attempts were rejected.
 I welcome the day when they decide to lay secretive self-interest aside, focus on making a real difference, and unite together for the common good.

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.

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.

* price for 23andMe can vary.

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