[cross-posted to alt.support.tourette, alt.med.fibromyalgia, and
sci.med.diseases.lyme]  

        In spite of several doctors' beliefs that my 12-y.o. son's symptoms are
highly suggestive of Lyme (although we have no positive tests yet), my
mother's instinct is telling me that Lyme doesn't fit.  He is on his
third month of antibiotics, with no change.  He has never had a rash,
and has never had red, painful, swollen joints.  He has always had a
hard time sleeping and has never slept much - even when he was a baby -
which I overlooked as just part of his Tourette syndrome (hence, a
cautionary note to ast-ers to pay attention if your child isn't getting
enough sleep, as chronic, non-restorative sleep can lead to worse
issues.  Once I get this situation resolved, I will add information to
my website reflecting all that I have learned as we have traveled this
path of Lyme, sleep disturbances, fibro, or whatever it turns out to be,
but the implications for persons with TS have to do with the issues of
sleep disorders and other conditions which can be triggered or
aggravated by chronic, non-restorative sleep.)

        I believe his severe headaches, severe sleep disturbances, stiff neck,
vertigo, memory and cognitive issues, and joint and muscle pains may be
due to fibromyalgia or fibrositis syndrome and an underlying sleep
disorder.  (Note:  his underlying TS symptoms have not changed
throughout this -- his tic severity and frequency have remained
constant.)  When the new {*filter*} work and brain imaging work (MRI, MRV and
brain SPECT) come in later this week, I will be pressing the doctors to
convince me that it is Lyme and not primarily a sleep disorder which has
brought on or aggravated fibromyalgia or fibrositis syndrome.  The
concern is putting unnecessary medications and antibiotics into his
body, when what may need to be addressed is a primary sleep disorder.
My additional concern is that anxiety and/or depression may eventually
result if we don't get the sleep issue under control and return to his
normal high standards and expectations for his schoolwork.

http://www.***.com/
"Fibrositis Syndrome is characterized by diffuse myosceletal pain,
chronic fatigue, unrefreshing sleep, and increased tenderness in
specific localized anatomic regions, but without laboratory evidence of
contributing articular, non-articular or metabolic disease."

        In the last few weeks, we have been paying careful attention to his
diet and sleep regimen.  Since adding in the melatonin and 5-HTP and
cal-mag at bedtime, he has been getting to sleep by 10 pm, and waking
without so much difficulty.  The last few days (since increasing the
melatonin to 2 mg instead of 1), he has appeared rested and alert by
7:30 am, which is quite a change for him.  (I have not looked into
time-release melatonin because his problem is more in getting to sleep,
rather than staying asleep.)

        There appears to be some good research to back up what my mother's
instinct is telling me.  Getting away from the common online info and
into PubMed has been most helpful.  There is a significant problem with
the overdiagnosis of Lyme, particularly in geographic areas like ours,
where "Lyme anxiety" is rampant.  One must be careful that "Lyme
experts" do not succumb to the problem of "if all you have is a hammer,
all you see is a nail."   PubMed has also been helpful with respect to
melatonin.

        In addition to the PubMed research below, here are some quotes from
"Lyme Disease," Daniel W. Rahn and Janine Evans, 1998:

p. 140 -- In patients with chronic, nonspecific symptoms and no obvious
diagnosis, the diagnosis of "chronic" Lyme disease may be made all too
readily.  Occasionally, these symptoms start after documented Lyme
disease, although more often, the previous diagnosis of Lyme disease has
not been proved.  Many patients with musculoskeletal pain, fatigue, or
memory and concentration problems actually have fibromyalgia.  The
diagnosis of Lyme arthritis is often made despite an absence of joint
inflammation, or the diagnosis of tertiary neuroborreliosis is based on
vague or nonspecific cognitive symptoms in the absence of objective
central nervous system dysfunction.  In many cases, the original
diagnosis of Lyme disease is very much in doubt.

p. 140 -- Fibromyalgia is often not considered in patients with
subjective symptoms of fatigue, musculoskeletal pain, and concentration
or memory difficulties but with no objective findings of Lyme disease.
Fibromyalgia can occur after Lyme disease (indeed, the sleep disorder
and muscle deconditioning seen in Lyme disease may predispose to
fibromyalgia), but fibromyalgia does not respond to further antibiotic
therapy.  The consequences of treating all patients with fibromyalgia
who happen to have an ELISA positive for Lyme disease have been
described.

p. 141 -- Fibromyalgia is a musculoskeletal pain syndrome that seems to
be predicated on sleep disorder and muscular deconditioning.  The
fatigue and concentration and memory difficulties seem to be related to
the sleep disorder.  Lyme disease also may be associated with a sleep
disorder, which is usually self-limited but may persist.  Patients whose
condition is misdiagnosed as chronic Lyme disease may also have medical
conditions other than fibromyalgia, including brain tumors, rheumatoid
arthritis, anti-cardiolipin antibody syndrome [ed note - haven't had
time to look that one up yet], and multiple sclerosis.

p. 141 -- The persisting biologic and psychologic effects of previous
infection with B. burgdorferi may include sleep disorder, inactivity and
muscle disuse, depression, and anxiety.  The cognitive dysfunction that
occurs with depression, fibromyalgia, anxiety, or primary sleep disorder
can mimic the cognitive dysfunction of late Lyme disease.  Formalized
neuropsychologic testing [ed note -- oh, no -- not *that* again !! ] can
be of great use in such circumstances.  Although the pattern of
abnormality seen in patients with Lyme disease is not unique, it is
sufficiently different from the patterns that occur with depression,
anxiety, head trauma, or Alzheimer's disease to differentiate Lyme
disease from many other causes of concentration and memory
deterioration.

p. 142 -- A table summarizing the differential diagnosis of Lyme and
fibromyalgia (which I have been unable to find online).

p. 149 -- Lyme Anxiety.  [ed note:  Much of this phenomenon will be
familiar to folks from alt.support.tourette :-) ]   Lyme anxiety is
common in and near areas endemic for Lyme disease.  There is widespread
concern that Lyme disease is incurable and that this infection can only
be brought into temporary remission and will continue to flare.  ...  In
some of the patients with "Lyme anxiety," no objective evidence of
inflammation or infection is found, preceding or current, and serologic
evidence of prior exposure to B. burgdorferi may or may not be present.
Quite often, a low-positive ELISA result is the only such evidence,
raising concerns of false-positive serologic testing.  Not infrequently
such patients have sought the advice of support groups of local "Lyme
disease experts."   This category of illness represents an enlarging
majority of the "chronic Lyme disease" population.  Such patients have
often been tested repeatedly, often with tests of no value (e.g.,
urinary antigen tests), and have been subjected to many courses of
antibiotics, often with agents of no proven efficacy.  Many patients
have found a place in their personas for "chronic Lyme disease," and
this may be the most permanently damaging aspect of Lyme disease.  In
response to anxiety about Lyme disease has come a trend toward
antibiotic regimens of greater duration or dose and combinations of
antibiotics.  However, this increased exposure to antibiotics results in
a greater risk of adverse reactions to therapy.  Not infrequently, drug
side effects have been misinterpreted as manifestations of Lyme disease
and occasionally labeled as "delayed Herxheimer reactions."   ...
Especially in patients receiving long-term antibiotic therapy, further
antibiotic treatment is not warranted.  A detailed evaluation to ensure
that no other illness is present is needed, with special attention to
possible fibromyalgia.  Such patients need reassurance and education,
not medication, to feel comfortable with their new understanding that
they do not have Lyme disease.

p. 190-191 contain a good discussion of the factors contributing to
errors in diagnosis.
Although cases of Lyme disease are being recognized more often than in
the past, several studies indicate that misdiagnosis is quite common.
In fact, in some studies, misdiagnosis was more common than correct
diagnosis.  Steere and colleagues reported that 57% of 788 patients
referred to a university Lyme disease clinic over a 4.5-year period did
not have the disease.  Of the referred patients without Lyme disease,
45% had previously tested positive in serologic tests for Lyme disease,
but repeat testing at the university clinic was negative.  Of those who
previously received treatment with antibiotics, nearly four out of five
failed to respond to therapy because of incorrect diagnosis.   ... THE
CLINICIAN MUST ALSO DISTINGUISH CHRONIC LYME DISEASE FROM FIBROMYALGIA
AND CHRONIC FATIGUE SYNDROME, the most common competing diagnoses.  Both
of these disorders carry uncertain prognoses, with most patients having
chronic, persistent symptoms and for which there is no 'magic bullet'
resolution.  Patients are understandably reluctant to accept these
diagnoses and thus exert pressure on their physicians to search for
alternative diagnoses.  Although Lyme disease may trigger fibromyalgia,
treatment with antibiotics has not proved to be effective in resolving
the symptoms and signs of fibromyalgia.  
p. 230 - A case summary of 16-year old girl who was misdiagnosed with
Lyme disease and treated aggressively and unsuccessfully with
antibiotics for four years, ...

read more »

Not yet ... but it's on my list in the event that the new {*filter*} and
brain imaging work (Wednesday) don't uncover something.  And even if
they do, it's on my list if I can find a decent pediatric neurologist or
specialist to handle that part of trying to sort out all of this ... for
now, the melatonin has helped him sleep for about five nights in a row
(where amitriptyline, Ambien, Percocet and Oxycontin all failed to
address the pain/sleep).

Yep - that is my underlying concern ... that if the sleep disturbance is
the tail that is wagging the dog, then antibiotics aren't going to cure
it.

Yep - I read it several years ago (before Oprah discovered it :-)
It wasn't necessarily a completely accurate representation of Tourette
syndrome, but I thought it did a great job of looking at the life of a
child growing up with an undiagnosed, misunderstood condition.  I really
liked Icy :-)  What did you think of it?

--
Tourette Syndrome - Now What?
http://www.***.com/

Dear TSNW,

Your research abilities are wonderful, especially when one considers that
you are dealing with a sick child! It looks like you are on the right track.
A primary sleep disturbance can be very debilitating. I hope you can get the
doctors to take your research under consideration.

I saw an article in this week's New York Times Magazine that might have some
bearing on your researches. It was about a family in Italy who has a genetic
condition just recently diagnosed called "Fatal Familial Insomnia". This is
the absolute extreme of sleep disturbance and this particular family is
losing members to the disorder at the rate of about one person every three
years. I thought it might be of interest to you.

http://www.nytimes.com/2001/05/06/magazine/06INSOMNIA.html

I am so happy to hear that the Melatonin is helping your son!

Benita

I don't know enough about Tourette's to comment on the accuracy of the
representation, but I agree that it does a great job of portraying a
child's experience of having a misunderstood problem.  Or more broadly,
the problem of being a "misfit" as a child.  Icy is a wonderful
character.  I think the most remarkable thing about the novel is how
perfectly Gwyn Hyman Rubio captures the inner life of this unique girl.

--
to email me use: tuck2 AT home DOT com

Fascinating.....thanks for posting..
KAT In CT

'Twas Sun, 06 May 2001 14:56:59 GMT  when the wise and venerated TSNowWhat?

thought provoking words:

You had just gotten me into researching Lyme, now you make me research
fibromyalgia.

So I did some research, and yes it fits what you've said.  So does Lyme, in
fact they are not mutually exclusive.  Fibromyalgia is a syndrome, often
existing from birth, but aggravated at some point by disease or injury.
Thus he could have Lyme or some other bacterial infection, and that is
bringing out the fibromyalgia.

You believed your son was having Herxheimer reactions from Lyme or other
infection.  From just a couple hours of research, it seems fibromyalgia
doesn't cause herx, but can be aggravated by them.  Was your boy having
herx?  Is herx a clearly identifiable condition, or is it as nebulous as the
rest of this?

My comments about the immune system were geared toward the way the body
fights a well entrenched infection like Lyme.  Fibromyalgia isn't an
infection.  As you know, antibiotics may fight the underlying infection
while there is one, but once the infection is gone, antibiotics will do
nothing about fibromyalgia.

I had untreated sleep apnea for 20 years; I had many of the same symptoms.
I was thinking this was due to apneas lasting three, four, five, minutes
causing damage due to oxygen deprivation.  I know that I had incidents like
that, where I would wake up panting and feeling like I had just fallen off a
ten story building.  Shortly before I started CPAP, I had an incident like
that which left me with a headache for four days.  But those incidents were
rare.  I woke up at the sleep center thinking it had been a pretty good
sleep, and the official results might not show apnea at all.  Instead it
showed many apneas and hypopneas, with my {*filter*} oxygen level falling as low
as 70%.  The longest I stopped breathing was a little over a minute.  Not
long enough to do harm, but bad enough that my rest was disturbed.  I can
believe that non-restorative sleep every night was actually a bigger
detriment to my health than the occasional incident where I stopped
breathing for minutes.  Either is pretty bad.  I spent the entirety of the
1970s and 1980s feeling sick nearly every day, and just like your macho son,
I kept it to myself and blamed myself.

--
RB |\  ? Randall Bart

nr |\  Please reply without spam                       1-818-985-3259
dt ||\                                    Nader Voter and Still Proud
a   |/ DOT-HS-808-065       MSMSMSMSMSMSMS=6/28/107        I LOVE YOU
l   |\ Unisys A Series Wiz For Hire:
l   |/                   http://www.***.com/

And then there's sleep disorders ... and magnesium deficiency ... and
anxiety/depression ... and at some point, it may all come back around to
a TS connection, if there's a magnesium and/or sleep connection.  I'm
just not fully buying Lyme yet (even though the doctors have been on
board with Lyme since the day after the hospitalization ruled out
meningitis and a few other things), given all the various issues here.
Because of our geographic area, a Lyme diagnosis is all too common, and
I just want to make sure we turn over every stone.

My older son had Lyme about six or seven years ago.  It was successfully
treated with eight weeks of antibiotics.  He was very sick, it was
clearly Lyme, and when he turned the corner (at six weeks), it was
obvious.  He had what I believe was a clear Herx several days after
starting the antibiotics ... his knees became noticeably swollen and red
and painful.  My younger son did not have such a noticeable reaction ...
and has never had clear joint involvement ... just vague complaints
about aches and pains in all joints and muscles, which he now says he
had all along, but he didn't complain about them because his head hurt
worse. His second severe headache was five or six weeks after the first
one, which one fellow from a Lyme support group told me wasn't exactly a
typical time frame for a Herx.  When the doctor examined him, he was
checking joints as well as fibro trigger points, so I suspect he was
doing his careful differential diagnosis, although he concluded that the
headache was "highly suggestive of Lyme".  I cannot say my younger son
had clear Herx reactions to the extent my older son did.  I won't talk
to the doctor again until later this week - he's out of the office until
after we get the MRI, etc.

Non-restorative sleep could explain all of his symptoms.  But what is
causing the non-restorative sleep ... Tourette's, restless legs,
periodic limb movements, Lyme, fibro, magnesium deficiency, another
primary sleep disorder, something else, or a combination of the above ?
I'm trying to get all of the doctors involved to consider all of the
possibilities, but there is no one doctor pulling it all together.
--
Tourette Syndrome - Now What?
http://members.home.net/tourettenowwhat

Correction to my response last night about no clear Herx:

I was just in archives looking up a {*filter*} harasser, and I happened
across a post dated three days after my son's first hospitalization, and
two days after he started taking antibiotics.  His temperature had gone
from three days of 96 to one day of 99, and he claimed his elbows, knees
and ankles felt like they were on fire, so perhaps he did have a clear
Herx?  I'm not sure if a Herx occurs after only two days of
antibiotics?  Or perhaps he had Lyme, and now has something else as well
... wonder if I'll ever know for sure.  I also found a website which
details some of the brain imaging differences (good 'ole Camilla again
:-) ... I hope the MRI/SPECT folks we're seeing tomorrow know what all
they are looking for:

http://www.***.com/ ~camilla/limbic.txt
--
Tourette Syndrome - Now What?
http://www.***.com/

Yep, this is, sadly, often the case. We had the same problem when Al was
sick. It requires a  'patient advocate,' to manage the case.
There is niche, here, waiting to be filled, by the way, by some enterprising
businessperson....medical, patient advocacy.

KAT in CT

   It can- with some people even within hours of abx- and that does sound
Herxlike.  

Thanks !
--
Tourette Syndrome - Now What?
http://members.home.net/tourettenowwhat

I wish you and your son all my best and I think you are a wonderful mother!'
Good Luck with the tests.
RJ