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CD57 CFS/ME or Chronic Lyme?

Hi. I have been diagnosed with CFS/ME but not sure if this is accurate. I just received results for CD57 test which were very low (10). Could that mean its Chronic Lyme or do CFS patients also get low CD57 readings? Thanks!
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Avatar universal
Welcome to MedHelp Lyme --

You are asking good questions ... with a big problem being that the medical profession is (still) in disarray about Lyme disease and how to diagnose and treat it.  Lyme was first identified a several decades ago, but there is still significant confusion in the medical profession about how to diagnose and treat Lyme and its traveling companions (meaning separate infections often carried along with Lyme, often referred to [as a group] as 'co-infections' of Lyme).

To my understanding, CFS [chronic fatigue syndrome] is not a disease but instead a collection of symptoms that the medical profession is still confused about, hence the term 'syndrome' [a collection of symptoms of unclear origin and nature.]  Docs who don't understand Lyme will instead often label the patient's symptoms in a vague way, to acknowledge that the patient feels lousy, but that the doc doesn't know what the ailment is or what to do about it.

ME [myalgic encephalitis] is defined as 'Myalgia, or muscle pain, ... a symptom of many diseases and disorders.'  In other words, the docs don't know what causes it, but it sure sounds fancy in the medical records.

More fuzzy definitions:  "CFS [chronic fatigue syndrome] may also be referred to as systemic exertion intolerance disease (SEID), myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), or several other terms."  [This is also from wikipedia, fwiw.]  

    ---- >> The short answer is:  many docs don't know what 'Lyme' is all about, and they continue to rely -- from knowledge decades ago -- on the earliest assumptions about Lyme.  The good news is that there *are* docs who do have the situation figured out, while the senior docs (and their followers) who first noticed Lyme years and years ago are unwilling to step up and acknowledge their ignorance in light of new research and understanding.  It's normal to be unsure when a new disease is noted, but for MDs to refuse to continue to educate themselves as more is learned is imo unacceptable.  [End of rant.]

The good news is that with appropriate antibiotic treatment for Lyme, it is usually quite effective when taken over a course of several months -- not days or weeks, but *months*.  Symptoms of possible co-infections (not Lyme, but separate infections often carried by the Lyme ticks) identified in particular patients must be assessed and tested for as needed, since Lyme and the co-infections usually need entirely different antibiotics from each other.

So ... back to your situation!  I am NOT medically trained, but I had Lyme more than five years ago.  I was fortunate that an old school friend from years ago had had Lyme, and she is trained in medical and pharmaceutical science, so I went straight to her when I was finally diagnosed with Lyme.  That's how I learned about the split in the medical community and the importance of seeing an MD who really, really, really does understand Lyme and how to diagnosis and treat it effectively (as well as other infections often carried by the 'Lyme' ticks).

There is still confusion in the medical field about Lyme and how to diagnose and treat it properly, so finding an MD who is an ILADS member (or at least follows the views of ILADS) is what I would definitely do.  Many of the ILADS-type MDs keep their affiliation or following of ILADS quiet, to avoid getting hassled by local and state medical boards who still cling to the old ways of treating Lyme that are too often inaccurate and ineffective.

If you search online for ILADS [short for International Lyme and Associated Diseases Society], there is a link to request names of ILADS-member MDs near you.  As with all developing diseases, there are good docs and there are not-so-good docs, so I would also locate a Lyme-oriented patient group in your area who can help you find a good Lyme doc in your area.

Sometimes the drive to an LLMD is farther away than one would like, but once properly diagnosed and established as a patient with the Lyme doc, the appointments are often only about once a month until treatment is over, which is often months.  (I had Lyme and babesiosis, and was in treatment for close to a year -- first antibiotics for babesia, and then different antibiotics for Lyme -- but that can vary depending on your infection(s) and on current treatment approaches.)

Someday the medical profession will have all this sorted out, but for now, it takes some grit and ingenuity from us, the patients, to find a good Lyme doc.  Be sure to get full (not summary) copies of all your tests to date, and take them to your new Lyme doc ... what the test results show to a good Lyme doc could be a very different view from what a doc who is a non-believer in Lyme has thought, and it saves time and money for the new doc to see what the previous doc has tested and found.

Sorry for the data dump here, but it's worth getting rid of Lyme and any co-infections.  It's nearly ten years now since I was diagnosed, and then had about a year of antibiotic treatment and recovery -- I was still fatigued for a few months afterward, but have felt great since then.  I wish the same for you!

Let us know how we can help -- all good wishes to you --
1 Comments
Thanks so much for your detailed reply Jackie!! I really appreciate it. I have a whole list of Lyme symptoms but according to my non Lyme literate doctor I also have all the symptoms of CFS so thats why the diagnosis is that. I think you are right in ensuring I see a Lyme MD to get proper care and a accurate diagnosis. I also just did the Australian Biologics Lyme test which I heard is reasonably accurate.  Delighted to hear that you have  recovered from Chronic Lyme so successfully! Thanks again.
Avatar universal
You are quite welcome -- !  I just searched online for
                          
                    ---    lyme disease australia doctors    ---

and got some very interesting leads.  I always think of Aussies as independent thinkers, and when it comes to Lyme, that is exactly the kind of approach needed to beat it.

If you are interested, there is a book from a few years ago call 'Cure Unknown', by Pamela Weintraub, now in paperback as I recall.  The title is a bit obscure, and I think the author was being sly, implying that the MDs who refuse to acknowledge Lyme for the misery that it is, and that so-called mainstream medicine has really missed the boat on this one.

There was a similar reaction even more years ago when AIDS first came to the fore:  the medical community was stubborn and wrong about AIDS, and Lyme has been regarded in more recent years by too many MDs in the same way.  The good news is that eventually the truth will out, and Lyme is being hunted down by numerous MDs who have open minds.  

Let us know how you do -- and all good wishes!  
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