Methylation for the Fluoroquinolone Sufferer

The issue of methylation can be and is very complex and can get confusing even for the most science oriented individuals.  My goal is, over a series of articles, explain the role of methylation in a basic way, and why it is important to the fluoroquinolone (FQ) community.

Some with a science background will find this information overly simplistic and that is my goal.  I myself am nothing more than an educated layman, who was forced to learn out of necessity. If one wants to learn in-depth about methylation, there is plenty of information available on the internet.  Also as a caveat, this is a hypothesis that is based on my opinion and the opinion of some others.  No treatment should be undertaken without the consultation of a medical professional and if you read further  it is assumed that you have read and agreed to my disclaimer.

In atomic structure, a “methyl” group is nothing more than one carbon atom connected to three hydrogen atoms.  Methylation is the act of adding or removing the methyl group to a compound or element. For us, methylation is very important because of what it does in our bodies.  When some compounds in your body “receive” or are joined with the methyl group a reaction is started. This reaction can turn on a gene or can activate an enzyme. Conversely when the methyl group is lost or removed the gene can be switched off and the enzyme can be deactivated.

Methylation does not refer to just one specific type of reaction going in your body but many types of reactions.  Some of the more important things that methyl groups do are turn on detoxification reactions that cleanses our bodies of various chemicals and activates serotonin production and in-turn melatonin.

MethylationMethylation works synergistically in your body according to your body’s own unique physiology.  This synergistic functioning of the body’s system is called homeostasis.   Problems with methylation are implicated in a whole host of maladies from cancer to autism and even advanced aging.

From our perspective, the problem starts when we are subjected to a variety of long-term stressors.  These stressors can be physical, chemical, biological and even psychological. They lower the glutathione levels to the point where it interferes with the methionine synthase reaction, which is part of the methylation cycle, and it causes a block to occur in part of the methylation cycle in response to oxidative stress.  This interferes with detoxification.

On a side note, almost all people in the FQ community have heard of glutathione, considered by some to be the body’s master anti-oxidant.  Many in the FQ community have also tried supplementing glutathione in an attempt to treat FQ toxicity.  Some have had a short term ‘feel good’ reaction while for others it usually has neutral to negative results.  There are specific reasons for this that I will cover in a later article.  So for now, it is best not to run out and start loading up on glutathione to try and fix the methylation problems.

Now back to the methylation cycle dysfunction and to our genetic profile.  There has been a buzz around the FQ community lately about genetic information. Many of you have had your genome mapped and then further learned about variations in certain genes related to detoxification.

In order for some of us to develop a methylation cycle dysfunction we must have inherited genetic variations which are called single-nucleotide polymorphisms or SNPs for short.  These SNPs must occur in a certain combination of genes that code enzymes and other proteins associated with methylation and other related pathways. But just because you had the SNP’s in certain genes does not mean that you will be beset with problems. There must be something else that comes into play.

So if the formation of a block in the methylation cycle is assisted by the presence of these inherited genetic polymorphisms (SNPs), one might ask, “Why did I not have problems with this before, if I have had these variations my whole life?”   The answer is you might or might not have had problems.  Chances are, if you were generally healthy, your body wonderfully compensated for any genetic variations that it had (homeostasis) until something came along, like the FQ’s, and triggered the process.  On another side note, this brings me to a point why I believe FQ sufferers goes through cycling, sometimes for many years, which I will also cover in a later article.

Another negative factor that happens when glutathione levels drop is that the glutathione no longer protects vitamin B12 which in turn allows toxins to start accumulating in the body.  In a vicious cycle these toxins in-turn interfere with the utilization of methylcobalamin or MeB12. If MeB12 is kept low for too long it cannot support the methionine synthase reaction, and it  becomes chronically blocked.  For some, this produces a vicious circle mechanism that causes problems to become chronic.

Fixing the methylation cycle is complex. The treatment must be tied to the individual themselves and based on their individual profile.  I must stress that this is not a ‘one size fits all’ proposition. For instance, certain SNP’s in genes such as CBS, MTHFR, or others can influence the type of support needed to correct the cycle.  A very important feature in this type of integrative approach is to tie the genetics of the individual to a treatment that is focused on correcting the methylation cycle block while supporting a variety of body systems and organs as well.

There are certain integrative physicians that are successfully using genetic information along with targeted supplementation to treat and correct problems with the methylation cycle.   So far these targeted supplementation protocols have been targeted in autism, chronic fatigue, fibromyalgia and a few others.  One physician who has gained notoriety for using this approach is Dr. Amy Yasko.  She has been treating, quite successfully, children with autism.  Another researcher, the late Rich Van Konynenburg Ph.D, adapted Yasko’s protocol for use in CFS.  There are yet others but limited time prevents me from listing them here.

It is important to note that these protocols will need to be tailored, or adapted, for the FQ community, and more specifically for the individual based on genetic information.  Having delved into the CFS community, I am almost certain that there are overlapping treatment spheres.  Meaning, I believe that there are individuals who are in other health communities, such as Fibro and CFS, that are suffering from FQ toxicity and are unaware AND they have unwittingly used a targeted methylation protocol to successfully treat their symptoms.

These protocols are multi-faceted and involve addressing many body areas not just the methylation cycle.   There are other doctors, such as Dr. Jacob Teitelbaum, whose S.H.I.N.E. protocol has been used to help those with CFS and other health problems.  These protocols focus on support for different body systems, which is very important. The methylation cycle however is a true upstream problem whose dysfunction can effect a whole host of systems such as mitochondria, endocrine, neurological, digestion, etc… I believe a many people in the FQ community fighting long-term issues, including myself, are/were constantly trying to fix downstream problems only to be thwarted by a dysfunctional methylation cycle.

This knowledge presents us with hope that by getting the methylation cycle functioning again one can set the stage for healing in the body, which will lead to the downstream correction of other health problems. Although I do not believe that this will resolve all problems such as some tendon/cartilage issues, it will reduce the oxidative stress load on the body, which a big factor.

I first started looking at methylation over five years ago, but lack of information and resources pulled my focus in various different directions.  Only this last year, with renewed genetic information at hand, desperation to change my failing health, and access to a researcher and personal physician that were willing to help, I was able to start researching more in-depth my own personal health issues as they related to methylation.

I am just starting on my own personal treatment journey in this area.  Like I said before, the contents of that treatment are based on my personal genetic data and has to be tweaked to compensate for genetic SNPs, systemic intolerances, and other unknown factors as they arise.  Although we get desperate for quick action, there is one rule I live by, “low and slow”.  This motto has served me well and that is why this process will take time.

One final caution:  I am not a medical professional, nor do I claim to be.  I do not know to what extent treating the methylation cycle can help those who are newly affected by FQ’s and there are a multitude of reasons for this.  I have been chronically affected by FQ’s and those that I interact with on a regular basis have also been chronically affected.  Many methylation problems develop slowly not acutely.

Learning about how the methylation cycle works and how to support it can benefit everyone includingGlutathione those in perfect health. I do encourage everyone,  who is interested, to learn as much about their own physiology and genetic makeup as possible to become the most informed patient that you can be.   Try to find a trusted physician (yes I know it is hard) that will work with you and your information and oversee any options that you choose.  I will share what I learn in this journey hoping that it will benefit those in the FQ community.    In the next article I will talk about methylation and glutathione supplementation.

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David experienced an adverse event to the the fluoroquinolone Levaquin in 2007 at age 46. Prior to, he was a healthy law enforcement official. Now, disabled with drug induced mitochondrial disease/dysfunction, he is an FQ patient safety advocate, citizen scientist, FQ researcher, author, and commentator. He has contributed to case studies and published academic papers on the FQ’s in the BMJ, European Journal of Medicine, The Journal of Community and Supportive Oncology, Oxford Academic Clinical infectious Diseases, and contributed data to many more outlets.

5 Responses

  1. Grace says:

    David, I beseech you to keep me posted on your research!! I was 46 when I was last floxed, basically the one that finished me off and it is now 3 years later, and I am still sick!! I have been unable to work since that last round of cipro and pretty much, keep getting worse. Thank you so much for all of your research!!!

  2. Susie says:

    David, thank you for continuing your quest to heal yourself and share your findings with the rest of us who are suffering from this problem. I am now five years out from my first exposure. I’ve gone through elbow surgeries on both arms with complete tearing of tendons and ligaments. Even after the repair, I’m still in pain. This condition also involves my ankles, knees, hips, wrists neck and back. I, like so many others, had been a vibrant, active person. You could find me running, kyacking, fly fishing, sailing or spending tireless hours in my garden. No more – ant yet when you look at me, you would have no idea what a wreck I truly am. I have been so discouraged of late, and your resent post has really encouraged me. Bless you and your family from the bottom of my heart!

  3. Betsy says:

    I too was floxed in 2007 at the aged of 46 and I still suffer today. My decline in health has been slow and progressive. I have recently ordered the kit for genetic testing. I appreciated what you are doing. Please keep us posted on your progress.

  4. Locke Cole says:

    Hi there, I have been working on research for the passed two years also, I have my own theory on the mechanism of action in FQ Toxicity. your research was brought to my attention and would like to discuss and share findings.

    Also, I find it hard to understand the above because It does not mention where Methylation takes places exactly, is it in intra cellular process? no luck with google.

  5. Dudley Smith says:

    Since taking cipro 5 years ago, one of my worst symptoms is thing called derealization ( feeling as though my surroundings are unreal) 24/7 do you have any info about this please?

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