Why Test? and “Dear Doctor” Letters

 

Many patients don’t see the point of doing “a lot of tests”.  This is too bad, because when it comes to something like FQT, a true mystery condition, the only hope we have of ever possibly finding a true “biomarker”, or “smoking gun”, is by at least looking for it.  Looking for it via testing doesn’t guarantee that we’ll find anything.  But not even looking in the first place guarantees that we won’t.  As FQT patients, I wish we’d demand more testing, if for no other reason than to rule things out.  A “negative” or “normal” test tells us as much information as a positive one does.  After all, most people who get a “normal” or “negative” result on a cancer test are happy and relieved to know that, and don’t feel the test was a “waste” just because of that result.

I’ve done a lot of testing on myself.  The only tests that came up positive were the anti-thyroid antibody tests.  I literally helped my GP pick these tests off the office computer to help him order them, because he didn’t know what they were.  When they came back positive, I felt somewhat vindicated.  Had I not requested those tests at 16 months post my reaction, I’m quite sure I would have never known I had an autoimmune thyroid condition before dying, because I was pretty sure back then that I wasn’t going to live longer than 17 months post my reaction.

Years later, as I researched more and more, there were a bunch of other simple blood tests that I wanted to run, but they were even more esoteric than the thyroid antibody ones.  They also tended to be more expensive, and only “specialists” could order them.  I wish I’d known how to suggest them when I was in the acute phase of my reaction.  I wish I had demanded to see more specialists right up front, during the acute phase.  Had I been able to roll in with a list of suggested tests for “FQ Toxicity”, with justification for those tests, I think I would have stood a better chance then of getting them.  Back then, my illness was “new”, and my reaction was dramatic.  When I finally was able to see doctors, most of them believed me and wanted to help me.   It wasn’t until Year 4 and 5, when I became that “chronically ill person with an invisible illness” that the tide turned and they started viewing me and my problems with skepticism.  Because I didn’t have the information that I know now, I was diagnosed 16 months too late with an autoimmune thyroid condition, and didn’t see the specialists I should have seen in the time frame necessary, or have the thorough diagnostic workup I deserved.  I lost a lot of time and potential for recovery those first 16 months.  Both times I was NOT on thyroid hormone, my condition progressed and got worse to the point where I felt like I was near death.  I don’t know if the same would have happened had I started thyroid hormone treatment earlier or stayed on thyroid hormone.  All I know is that time alone wasn’t helping me recover, and that the only thing that gave me a quality of life worth living were the thyroid meds.   So I was glad that I had done the testing for those antibodies.

Here, I provide a few example “Dear Doctor” letters to various specialists, suggesting additional testing above and beyond the standard first tier testing.  Although there are plenty of tests that could be run, I chose the autoimmune neurological tests based on available research literature and clinically available tests, and provided extensive references as justification.  The suggested mitochondrial genome testing is based on the same.  How likely are we, as patients, to get answers from such testing?  We won’t know, until and unless enough people test and these can be ruled in or out.  If enough positive tests started coming in, researchers would then probably start to take more notice as well.  If all tests are negative for most or all of the patients doing such testing, it doesn’t mean we don’t have neurological or mitochondrial issues.  It only means that the few tests we ran don’t reveal where exactly the problem is.   If you’ve read this website/document, you’re hopefully starting to understand that there are potentially a million or more places to look for a “biomarker” which will provide a diagnosis.  These few tests are just some of the current clinical tests available to us as to where we might look.

These letters are suggested templates only.  You can download them, then copy and paste into Word, and then edit any aspect of them as you see fit for your particular situation.  All the recommended tests are simple blood tests only – no nerve conduction tests, CSF (lumbar punctures), biopsies, or other invasive/painful testing.   Although they are simple blood tests, they are not the type of tests that most physicians would think of right off the bat (which is why I wrote these “Dear Doctor” letters in the first place).  For the more intrepid and motivated patients, you can even order most or all of them yourself.

Dear Doctor:  This is Dr. Todd Plumb’s excellent introduction letter to FQ Toxicity.  I recommend this letter be provided to all your physicians, including the specialists (neurologists, endocrinologists, rheumatologist, orthopedists, mitochondrial specialist).   I am in no way associated with Dr. Plumb, nor do I have any involvement in writing this letter.    A huge “Thank You” to Dr. Plumb for providing this valuable letter to FQ victims for many years now.

Dear Dr Neurologist:  Includes request, references for justification, and patients should add information about their own particular symptoms as well to summarize for the neurologist.  If nothing else, hopefully a letter like this (or just the references alone) will help your neurologist to understand that FQT is a very real phenomenon.   Additional antibody testing can be found here:  Use of Antibody Testing in Nervous System Disorders.    A good paper describing current clinical testing which exists for typical as well as less well known subsets of Myasthenia Gravis is Muscle autoantibodies in myasthenia gravis- beyond diagnosis.    Given the FDA February 2011 FDA Black Box Warning labeling change which actually states that “Fluoroquinolones have neuromuscular blocking activity and may exacerbate muscle weakness in persons with myasthenia gravis”, I think every FQ victim with severe muscle weakness should be tested for these, in particular, the lesser known  subsets.  Additional strong contenders for neurological symptoms, as well as all the other FQT/FQAD symptoms are the channelopathies (1,2), and the Acute Autonomic Neuropathies, which should be considered in a thorough workup.    Tests for four alpha/beta adrenergic and all five muscarinic receptor antibodies are now available.  For a discussion on how to get tested, see here.  Included in the discussion is the lab that will run the tests, here, and the research supporting these tests, here.  Justification for molecular genetic testing for neurological disorders as part of routine neurological practice is now emerging, with articles like this one and the corresponding paper you can take to your neurologist or provide to your insurer:  Clinical Exome Sequencing in Neurologic Disease.

Dear Dr Mitochondria   (Geneticist usually):   I left my own list of symptoms in this letter as an example; obviously, you would provide your own.  Reference papers for FQ’s causing mitochondrial toxicity are within the SONAR and FDA document links provided.   Reviews of diagnosis  and testing are here:  Mitochondrial disorders: Overview of diagnostic tools and new diagnostic trends and here:    Mitochondrial Myopathies: Current Diagnosis (II).   I’m also going to throw in Cytochrome P450 testing here, because a geneticist might be the most likely to order this, although I think any physician can.  Here is an example of one lab that can provide testing:  Iverson Genetics DMEx Genotype Panel

Dear Rheumatologist:  Coming soon, or you can write your own until then.  There are numerous published studies on the tendinopathies and musculoskeletal complications of FQ usage available for references.   This article reviews overlap syndrome in autoimmune rheumatic disease, with particular emphasis on the associated serological markers:   Autoantibodies and overlap syndromes in autoimmune rheumatic disease.   Here is another reference:  Antibody Array 5 – Multiple Autoimmune Reactivity Screen™

Dear Endocrinologist:    Rather than provide a letter, I decided to put this into a separate section.   I hope to provide references soon.   Given the type of testing I am recommending, I suspect most flox victims will have to test on their own.

Dear Orthopedist:  I have not written a letter for orthos.  I think MRI’s and ultrasounds would be the mainstay of testing here, other than physical exams.  However, orthos are the ones doing the surgeries on ruptured tendons.  They should be well aware of FQ-Induced tendinopathies and ruptures.  But if you want, you could always supply them with a long list of published references if you feel you need to convince them that the FQ’s caused your rupture or other ortho-related problems.

 

Update March 2015:  I was finally able to test for MuSK, NMDA (R1), LEMS (VGCC), and MPO antibodies; RBC Cholinesterase, and Serum Tryptase/Histamine.  All these were negative or within normal limits for me.  For the antibody and cholinesterase tests, this by no means rules out an ACh-related or glutamate-related pathology; it simply means that 1)there may be other tests available that I don’t know about, and more likely, 2)the correct biomarkers and tests haven’t been discovered yet or aren’t in use clinically yet.   I think Mast Cell Activation Syndrome is still high on the list for me – the problem is, I need to be highly symptomatic during the blood draw, and with those symptoms, I’m unable to drive anywhere.  I was my “baseline symptomatic” during the test – but I’ve noticed that after I eat anything anymore, I immediately (within minutes) develop symptoms indicative of this syndrome.  IgG4 testing would be next on my list.  I was surprised that the MPO Ab’s were negative, given the sequence homology and my high TPO titers, however, I was also pleasantly surprised that the testing for these antibodies is specific enough that it appears there was no cross reaction, or a false positive, occurring as well.  I did run MG antibody tests last year, and I was borderline positive for the modulating ones at that time, and negative on the other two.   I am negative for CMT according to my DNA 23andMe results; however, I haven’t done a more extensive testing for this.  I did have a more extensive genome test run for Marfan’s Syndrome, which also came up normal.  I’m currently looking into mtDNA with associate nDNA testing, but unless insurance will cover it, I doubt I’ll be able to afford it.

 

Table Of Contents