Chronically Elevated Mycoplasma Titres

[Sternjs]

Despite 15 months worth of antibiotics (mostly doxy and biaxin) our 12 year old dd has had high myco numbers for well over a year now. She is being treated with the assumption that she has an autoimmune encepalopathy (our doc does not seem to like using the term PANS.) After being out of school for all of 2014-15 she actually made it through full days in September and October of 2015 before things began to get worse again. She is now back on home bound instruction and while not as intense many of the original behavioral symptoms have returned. Though she has tested positive for Strep, Lyme, Coxsackie, and HHV6 these have mostly resolved. The constant through the last 18 months has been the persistently elevated myco titres. Interestingly though she also had a Myco PCR test done in Nov 2015 that came back negative. Can anyone explain how her IgM titres (indicative of a current infection) can be so high yet there be a negative PCR result? Rather than an actual infection is this "simply" immune dysregulation? She also has elevated IgE titres (785, negative is <200) despite being thoroughly tested for allergies and parasites, all of which came back negative.

 

Myco p Results: Ref Range IgM >769 U/ml positive, IgG >320 U/ml positive

9/24/14 IgM 1632 U/ml (pos), IgG 817 U/ml (pos)

12/29/14 IgM 1310 U/ml (pos), IgG 810 U/ml (pos)

3/24/15 IgM 1586 U/ml (pos), IgG 1167 U/ml (pos)

6/23/15 IgM 1385 U/ml (pos), IgG 682 U/ml (pos)

9/17/15 IgM 1901 U/ml (pos), IgG 1399 U/ml (pos)

12/11/15 IgM 1652 U/ml (pos), IgG 1378 U/ml (pos)

 

 

In July 2015 she had IVIG that did seem to alleviate many of the emotional issues, at least for a few months. As this was out of pocket it's not likely that we can afford to do this again. She has been under Dr Bs (NY) care and he has been great but it feels like we are at a dead end. We recently went to an infectious disease doc to look at this from a different perspective. To our surprise he did not dismiss our concerns but said that after speaking with several doctors plus a director at LabCorp (I guess to assess the veracity of the results) he suggested that we see a pediatric ID doc at a regional hospital...ie, he didn't know what to make of it.

 

Watching her fall apart all over again has been tough enough on my wife and me but it is just crushing our daughter's spirit. If anyone has further treatment suggestions or doctors that have a handle on this we would appreciate your input.

Edited January 10, 2016 by Sternjs

[sf_mom]

In our experience the following information rings true. Lyme is extremely difficult to treat (we have been at it almost 6 years). I suspect other co-infections, toxins, metals are dragging on her immune system making it difficult for her to resolve mycoplasma. My mycoplasma titers resolve after several years of treatment for Lyme et al.

 

You might consider seeing an integrative LLMD to take a further look at potential issues.

 

Co-infections

 

Organism Prevalence
Babesia 8-20% *
Bartonella 40-70%
Ehrlichia 10-50%
Borrelia 18-40%
Mycoplasma 25-70%

* Some Lyme doctors have
estimated that the presence of
Babesia infection may actually be
70% or higher based on their clinical
experience.

When reviewing the symptoms
caused by the various coinfections,
it becomes clear that
there is significant overlap
between the symptoms which
result from co-infections and those
that are caused by Borrelia itself.

Though Borrelia may be the ringleader,
it is critical that one not
overlook the very real and almost
certain reality that co-infections
may be a significant part of one's
current condition.

In summary:
• Co-infections are the RULE, not
an exception.

• The average child with Lyme disease
has 2-5 co-infections with an
average of 3.

• Treatment of co-infections is
required and often, they must be
treated before or concurrent with
the Borrelia treatment itself.

• If you don't test for and treat coinfections,
you are not putting
yourself in a good position for
healing.

• Most people with chronic Lyme
have 1 or more co-infections.

• Co-infections require different
treatments in many cases. Do not
assume that you are covering them
with only the Lyme treatment.

• Co-infection testing is often
unreliable as well and you need to
repeat them over time.