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» LymeNet Flash » Questions and Discussion » Medical Questions » Help - new disturbing OCD(?) symptoms in my 4 year old!

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Author Topic: Help - new disturbing OCD(?) symptoms in my 4 year old!
tickbattler
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Hi all,

One of my twin boys who has been clinically diagnosed by Dr. J with lyme, bart and babs has recently started making clicking sounds with his tongue and pointing repeatedly with his finger. He also shakes his head slightly and has become more verbally and physically aggressive. He also says "sh" a lot while he is pointing his finger.

The pointing started subtly a couple of months ago and I didn't think anything of it. But now he does it a lot more and has started doing these other things, like the sounds.

If I ask him to to something and he doesn't want to do it, he has a very loud and strong negative reaction. He has been oppositional since this disease started, but it seems to be getting worse.

His only other symptoms besides the behavior stuff now is headaches and night sweats a few times per week. Sometimes his eyes hurt too but it seems that he points to above his eyes so I wonder if it's part of the headache. He used to have terrible insomnia but fortunately that has stopped.

He has been on Mepron, cefdinir and bactrim since June of 08 and I am very concerned that he is backsliding. He was on azith instead of the cefdinir for a month in the beginning, but his stomach couldn't tolerate it.

Does this sound like OCD to you? Did you or your child have any of these symptoms?

In your experience, do you attribute it to bart or lyme or babs or something else?

What drug or drugs do you think helped get rid of this symptom?

Thanks so much. I see Dr. J on Friday with him and would love to get some info before that.

tickbattler

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jkmom
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My daughter has OCD but it is different than your son's. Could the pointing be a tic? The oppositional behaviour could be happening if you interrupt an OCD ritual he has, maybe one you can't see or don't notice.

People have told me that the OCD/psych symptoms are likely to be bart. She just started Bactrim and I'm hoping it gets rid of it.

My daughter also has a constant headache that babs treatment, doxy, and others haven't touched.

Sorry I don't have any suggestions for you but that is my experience with OCD/TBI.

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Tincup
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Hey hey...

I am NOT a doctor.. and I am most sincerely glad you will be seeing Dr. J. He is the best in the world.... but in the meantime...

Perhaps read this short article.

Hope it helps.

http://www.tsa-usa.org/Medical/whatists.html

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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tickbattler
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Thanks for your replies. Yes - Tourrette's - that's what I was trying to think of. We don't have any family history of it so I strongly suspect it is lyme related. I hope it is something that will go away with treatment. This is just a nightmare.

tickbattler

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bettyg
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battler, tourettes is what i would have suggested also; i noted the link in my newbie's link for future as we have discussed this before for others.

good luck.

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blaze
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You might be interested in the following article. Lyme could be working alongside something else in the environment. I say this as someone who developed OCD pretty much overnight...

http://weepinitiative.org/talkingtoyourdoctor.pdf

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Truesun
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Hello Tickbattler,
I would like to comment you are not alone in dealing with this. My 7 year old had VERY similar symptoms. I past Lyme to him through birth. Magnesium does help as the one person replied. Dealing with the yeast issue has also been very helpful. He takes Nystatin and fungal detox from Transformation Labs. This is good stuff for yeast and to aid in digestion. He takes it before he eats. He also has multiple food allergies. Identifying these has helped. He also could not take Zithromycin because of his stomach. His headaches always seemed to come from light sensitivity, you may want to watch for this. He has very high EBV titers, so trying to deal with this co-infection is a big part of my son's treatment. He is on no antibiotics now because he needed a break. We basically apply the same treatments they use for autistic children and they have helped. He is having a bad spell currently but since we have been through it before I know we can knock it down again. He is in second grade and able to go to school like any other kid. Hope this helps.

--------------------
Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful.

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Truesun
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Hello Tickbattler,
I forgot to add fish oil. This has been big in his brain maturation and protection. I get my on Ebay it from Carlson Labs and is made for kids. I'm sure there are lots of places you can buy it.

--------------------
Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful.

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Mo
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tickbattler,

i noticed your son started rifampin a couple of weeks ago?

that, coupled with the symptoms and treatment you describe can explain allot of this.

talk to doctor jones about it, keep a list of when symptoms started related to when meds started.

my son had "tourettes" like symptoms that were definitively lyme and bartonella related.

some of the ocd symptoms were related to bartonella, lyme and mycoplasma fermentans.

he had a recurring facial tic, rituals, and similar outbursts to what you describe.

the patterns changed with treatment, sometimes a worsening, sometimes improvement.

this could be a sort of "herxheimer" reaction if rifampin is getting at mycoplasma or bartonella..
or it could be one of the neurological infections taking a lead (i was told by a renouned LLpsych years ago that these infections, while in treatment, can present allot like the carnival game where you club the goafer -- as one infection gets clubbed down, another one can pop up)

that is certainly another possibility. jones is best at evaluating that.

ie: in our case, at one point, a change in abx combos relieved the ocd symptoms, notably.

my son was treated by jones (still is, but now he is dealing with a reinfection/relapse)

it was when he was treated and younger that he had the kind of symptoms you describe,
sort of ocd and tourettes-ish, combined.

i can happily share with you that ALL of those things (the facial tics, the rituals, the verbal outbursts) have been treated with antibiotics, and resolved.

you'll read on the board that my son is still ill now, but, again, this is a relapse/reinfection,
and interestingly, it comes with different symptoms than the first go around.

my point is, it's treatable, and neuropsychiatric tick-borne infections will mimic some of the symptoms of some mental health "syndromes", but do not follow the pattern of true tourettes or ocd. you'll see that antibiotics effect the symptoms in this case.

which indicates that the symptoms are reactive to infection in the brain, and this physiological phenomena is well-documented in medical science.

also, specific to lyme, read the published work of dr. r. bransfield. (you can find it at lymeinfo.net)

share the patterns of symptoms with doc j and he will know whether to stay the course, test more, or change up his med combos.

this will get better.

mo

--------------------
life shrinks and expands in proportion to one's courage
-- anais nin

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tickbattler
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Thank you all again...this really helps.

Trueson -

Do you recall what magnesium supplement you used for your child? I know sometimes mag can cause loose stools so I want to be careful with that. My son can't swallow a pill, so I would have to mix it in yogurt or something.

Also, I do give fish oil to all 3 of my children (who all have lyme and coinfections). I use the Nordic Naturals brand that I buy at Whole Foods, but will look into the Carlson one. They are strawberry flavored so the kids just chew them. Are the Carlson ones chewable?

I only use the standard daily dose that is listed on the bottle. Did you use a higher dose for your son? I wonder if there are any safety issues with that? I know adults use higher doses.

Mo-

Thank you so much for all of your info. It really helps to hear that the tics resolved with treatment! That is what I needed to hear.

That is very interesting about the coinfections popping up when one gets knocked down. The carnival analogy is a good one. I have read about that before on this site and it helps to have it confirmed.

I do track their symptoms daily and note what meds they are on. I find it essential to do this with kids this small in order to figure out if they are improving.

My other twin 4 year old boy is the one on Rifampin. He is having anger and violence issues and that is why I asked for a different bart med than Bactrim, which he had been on for the past 9 months. I think the carnival game phenomenon happened with him, as many of his babesia symptoms have cleared, even though he still has night sweats. He fortunately doesn't have any of the tics, but he is still very fidgety and the slightest thing sets him off.

I am thinking about inquiring about Rifampin instead of bactrim for my twin with the new tourrettes type symptoms, as well as a switch in lyme meds (he is on omnicef for that). I think it's time for a change.

Now I just read a thread that said that Mepron should not be taken with Rifampin and both of my boys are on Mepron!!! They still both have night sweats, so I don't think the babesia is quite gone. I will have to ask Dr. J about that, but apparently he doesn't have a problem with it, since he has one of my boys on both drugs.

Mo - do you remember what drug specifically relieved the tics and OCD symptoms in your son? Also, do you recall what drug your son took for mycoplasma?

Thank again for all of the replies. It really helps and gives me hope through all of this.

tickbattler

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Geneal
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I read the post 4 times yet didn't see reference to facial tics....

Usually inappropriate language is associated with Tourettes.

I would call Dr. J. and report all symptoms.

Some of the symptoms your son is displaying almost remind

Me of working with children with Pervasive Developmental Disorder.

Some of the symptoms are some of the types of behavior I've seen.

Not wanting to scare you. Just my thought after reading your post.

Maybe a herx. Maybe a reaction to the medicine.

May want to stop the medicine and see if the symptoms disappear.

I would call the doctor and see what he says.

Sending you and your son positive thoughts and prayers.

Hugs,

Geneal

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tickbattler
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Hi Geneal,

I never mentioned facial tics, just other tics such as pointing and shaking his head and making clicking sounds. Today he was clapping some and saying "Sh" as well.

I looked up the Pervasive Developmental disorder and certainly hope it's not that. I will ask Dr. J about it just in case. I know many of the symptoms are the same.

But this kid has had 8 tick bites and was born to and breastfed from a mom who had lyme (unknowingly). The fact that others have had children with this behavior that went away with treatment is a good sign I think.

We haven't changed meds in 8 months, so I think we need to do so. Fortunately, our next Dr. J appt is this Friday, so we will be able to do something soon.

Thanks,

tickbattler

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hoot
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Hi!
I work at a doc's office. She treats children with autism. Many times we see increases in OCD when we are killing off gut bugs, etc. We find

the die-off is minimized by slowing down the killing and/or giving charcoal on an empty stomach to mop up the mess.

Another reason for OCD can be PANDAS due to strep infection.

Jen

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Mo
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lyme and coinfections, when infecting the brain centers associated, can mimic symptoms of PPD, autism, tourettes, aspergers..

the list is endless.

it concerns me that these diagnosis are being put forth to consider, when the child has history of lyme and other tbd diagnosis and is in treatment for them. (tho i do agree with magnesium deficiency's ability to contribute to the effects of the tbd's)

of course, you always want to rule out any viable possibilities as far as other diagnosis.
you can do that through research and with doc j.

in this case, if i understand this correctly, in addition to highly significant exposure, and current diagnosis and treatment, these symptoms are shifting and changing over time, not following the diagnosis criteria of the various syndromes from which the child may have a few symptoms
(of each).

tickbattler,

i think asking to change med regimens is a good idea. in cases this severe you are often dealing with numerous infections. back when pcr tests at mdl were decent (there is no pcr test available to my knowledge at this time that comes close to mdl of old's sensitivity) -- over time, my son tested positive for lyme, bartonella hensalae, and mycoplasma fermentans.

i can tell you which med combos effected these particular symptoms, but they cover a bit of a range so i'm still not sure which infection was predominant.
also - disclaimer - response depends as well on current load and what previous rounds of meds accomplished, ect.

son initially had psychotic outbursts, explosive rage outbursts, facial tics, ocd, anorexia (psychological/ocd), insomnia, severe depersonalization and severe cognitive decline.

in that state, he was first put on IV rocephin, which was immediately followed by a severe neuropsychiatric herxheimer response. after a few weeks of this, he started to improve neurologically, in a general way.

a few months in, rifampin was added -- and that med mainly (after a period of increase in symptoms) targeted anger and depersonalization.
son's personality started coming back with this med, and it clearly dealt with those lightning fast, explosive anger outbursts.
prior to that -- zithromax and bactrim seemed to drive it deeper into the cns, first not much change, then symptoms got worse, new ones appeared.

so, rifampin was key in my son's case.

later, it was the combination of minocycline and rifampin that impacted the ocd and facial tics.

the mino/rifampin combo was thought by doc j (and my own LLMD in nj - doc e. - co-infection specialist) to, in combination, work not only on bartonella, but mycoplasma fermentans as well.

-- that combo also has impact on lyme.

he was on this combo for many, many months and it slowly resolved all of these psych symptoms, the cognitive symptoms (slowed processing, tracking, reading, light sensitivity) continued for some time after that, the insomnia hung in there too.

(the above recap is prior to his re-infection, above was age 12-14)

i'm going to try and find the literature on these symptoms and tbd's and paste it here.

this is not the "most common" presentation, but it's so important that folks be aware.
this is probably the most largely misdiagnosed group, and they sooo need proper, careful treatment and analysis.

mo

--------------------
life shrinks and expands in proportion to one's courage
-- anais nin

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Geneal
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Please do not misunderstand why I referenced PDD.

I said the symptoms remind me of PDD.

I am not able to make a diagnosis.

Nor would I think that this would be a diagnosis

That would even be considered.

I meant that the symptoms seem to be ones of distraction

From maybe too much external stimuli such as touch or sound.

Or in some ways closing out the environment to such stimuli as well.

Such as what we see in children with PDD.

A means to escape/distract from whatever is over loading their systems.

I didn't mean to scare you, was just trying to give you something

That maybe you could relate to prior to speaking with the doc.

Please forgive me if I caused you undo worry.

That was not and will never be my intention.

Sending you and your precious baby positive thoughts and prayers.

Hugs,

Geneal

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Mo
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here's a few articles of interest from my files.
mind you, this is only some of what's been documented on Bb and psychiatric manifestations of the same, there is far less published research on co-infections and the psych symptoms they can cause, tho the experienced LLMD's, such as jones, know from clinical experience that bartonella and mycoplasma fermentans can also cause the psych symtoms (including ocd-like presentations).

(i'm going to be adding more articles below,
starting now, 11pm EST)

snipped from dr. br. (LLpsychiatrist) article;

source:
http://www.mentalhealthandillness.com/tnaold.html

The Neuropsychiatric Assessment of Lyme Disease

The emotional and behavioral symptoms caused by Lyme disease are more complex to understand than the cognitive impairments. Let's first review the physiology of emotion.

The different emotional functions have a hierarchy of circuitry, which includes stimulatory pathways, opposing inhibitory pathways, and a hierarchy of modulation centers. The basic hierarchy is pre-frontal cortex, para limbic association areas, limbic structures, and brain stems - hypothalamus. Lyme encephalopathy can result in dysfunction of the modulation centers, inhibitory pathways, and stimulatory pathways. Autopsies, animal studies, and brain imaging tests have contributed to this understanding.

The presenting symptoms of NPLD are sometimes emotional in nature, and include obsessive-compulsive disorder, depression, and aggression, panic disorder, and other phobic disorders.


In considering the behavioral symptoms, these patients can become suddenly suicidal and there have been completed suicides attributed to Lyme disease. Homicidal ideation, urges, and behavior occur in some of these patients. Some adult patients describe struggling to not act on these urges. When these patients act on a homicidal urge, more commonly it is a child becoming assaultive to a sibling. Dissociative episodes sometimes occur with these patients occasionally accompanied with aggressive behavior and loss of memory.

Compensatory compulsions are common in an effort to compensate for the memory deficits. NPLD can imitate a number of common psychiatric syndromes. It can be difficult to differentiate Lyme disease from rapid cycling Bipolar illness or Posttraumatic Stress Disorder. Eating disorders are common. Invariably these patients either gain or lose weight. Sometimes massive weight gain is also seen.

--------------------
life shrinks and expands in proportion to one's courage
-- anais nin

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tickbattler
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Mo -

Thank you, thank you, thank you! I have seen the same type of progression with my kids. I feel that the bactrim helped initially but my twin boys have become more and more angry and difficult to control over the past 9 months, particularly in the last 2 months.

I am frankly a bit frustrated that we didn't get on Rifampin sooner. I still haven't seen any improvement on it with my one twin, but it has only been about 2 weeks, and I am hopeful from what you and others have said about it.

I think I am noticing a worsening of the anger symtpoms from the rifampin...do you remember how long this lasted before there was some improvement?

My (formerly) sweet little guy now often raises his hand as if he is going to hit me, and sometimes does hit me and/or glares at me for no reason.

Your son's former symptoms are very similar to my twin with the tics. He also has had light sensitivity, insomnia, night terrors, explosive anger outbursts and manic/aggressive behavior. He has headaches and eye aches too several times/week, but does not complain much about pain anywhere else.

I think he has babesia too, as he has pretty severe night sweats (his head primarily). Fortunately, something in his drug protocol has relieved the insomnia and night terrors, which were terrible.

He has continuously tested negative except we finally got a positive bart hens. test through Specialty labs. I'm sure he has a lot of stuff going on though. His ANA was abnormal through Fry labs too.

I hope Dr. J agrees to put him on rifampin as well. I also want to also inquire about biaxin as a possibility with the rifampin. Not sure if young kids can take minocycline, but will definitely ask about it. Thank you for that. I know that is a popular drug, and if it worked for the tics in your son, it could be a good option for mine if he is not too young for it.

If you do end up locating the literature, I would be very grateful for anything you have on these symptoms.

Also - do you mind sharing info about your LLMD via a private message? Your LLMD specializes in coinfections? I would be interested in hearing more about this LLMD. I am not entirely happy with my husband's LLMD, so I am always looking for good alternatives!

I can't thank you enough for the detailed info. It has helped immensely. I am working on my questions to Dr. J right now!

I hope you are seeing good progress with your son this time around. So sorry you are dealing with this again.

tickbattler

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Mo
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hi tickbattler, i posted an article above your post you may want to see, perhaps while you were writing.

i'm going to add a few more while i'm on that track of thought -- then i'll come back and read your post later and answer it.

mo

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Mo
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i'll post a few here, but will come back to edit more in --

below -- interesting probe into mycoplasma pneumoniae and it's cns manifestations similar to tourettes,
there are five strains of mycoplasma, i have been told by the LLdocs that m.fermentans (what my son had/s) causes psychiatric symptoms in the CNS.

----snipped from the following article--------

Tourette's Syndrome and Mycoplasma Pneumoniae Infection

source: http://ajp.psychiatryonline.org/cgi/content/full/157/3/481-a?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=Tourette&andorexactfulltext=and&searchid=1099087100382_7444&stored_se arch=&FIRSTINDEX=60&sortspec=date&resourcetype=1&journalcode=ajp

Mycoplasma pneumoniae is known to cause extrapulmonary infections, including central nervous system (CNS) manifestations.
CNS complications often occur without preceding or associated pulmonary symptoms.

Reports of successful cultivation and a positive polymerase chain reaction with CSF indicate that Mycoplasma pneumoniae is able to penetrate the blood-CSF barrier. The inflammatory signs, immunological response, detection of Mycoplasma pneumoniae DNA in the CSF, and prompt improvement of the symptoms of Tourette's syndrome during antibiotic therapy for our two patients all point to encephalitis caused by Mycoplasma pneumoniae.

Tourette's syndrome is believed to be the final common pathway of various disorders that have different etiologies. Infection with various agents, including Mycoplasma pneumoniae, should be considered a possible etiological factor in predisposed individuals. Immunological mechanisms have also been proposed for both Tourette's syndrome (1, 5) and disorders appearing after infection with Mycoplasma pneumoniae. However, the underlying mechanisms remain unclear.

------------------------------------------------


below -- article by lyme specialist in long clinical practice (written, 1994), i'm sure we can assume these patients were dealing with co-infections as well.
i am leaving his full name because he is deceased:


------ snipped from the following-----------

The When To Suspect Lyme Disease essay

written by John D. Bleiweiss, M.D. in April, 1994

source: http://cassia.org/essay.htm

Personality changes are nearly universal in Lyme encephalopathy with emotional and expressive incontinence being typical. Usually there is a baseline irritability which fluctuates. Patients with LD encephalopathy react to even mild degrees of stress with frustration, anger or crying spells out of proportion to the situation.

Emotions can reach escape velocity and rages can become volcanic with a momentum beyond volitional control. Unpleasantness is inevitable due to volatile tempers, super critical dispositions, and impatience with themselves or others.
Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. Low threshold exasperation in unexpected circumstances is not uncommon. Thus a parent responds to an infant's needs with anger and frustration. Perpetrators of "shaken baby syndrome" recapitulate an emotional response indistinguishable from that of a Lyme patient whose encephalopathy is out of control.

Many express morbid fears of occult illness, impending death and can be generally pessimistic or maudlin. Some develop intricate paranoid theories regarding imagined conspiracies against them. Lyme patients often evince a tendency for being overly sentimental. Hyperbolic thought finds expression in obstinacy, self-righteousness, being contentious, speaking in categoricals, and inappropriate and atypical vulgarity.

Internalized anxiety results in the perception of being hurried even without a deadline or the inability to remain calm when there is no reason for not feeling calm. Panic attacks are the extreme of this anxious state and should arouse a suspicion of LD. I suspect that in addition to CNS infection of the limbic system, these phenomenon could also be the result of elevated adrenaline levels, Mg++ deficiency or hypoglycemia. A rare LD patient will admit to agoraphobia or claustrophobia.

Depression alternating with anxiety is very common in LD. Psychiatrists should routinely evaluate a depressed patient for LD before/when initiating psychotropic medication. A patient with LD may have a plausible reason to be depressed, but their emotional response can not only be incongruous with their usual coping style but also the depression can be ablated or ameliorated with control of the LD infection. Lyme encephalopathy typically vitiates an otherwise mature and functional emotional repertoire.

With a loss of voluntary and subconscious editorial control of emotions and expression in word or behavior, a patient with encephalopathy gives the general impression of being erratic, inappropriate, if not dysfunctional. Less frequently, mania, obsessive-compulsiveness, schizoaffective disorders and homicidal/suicidal ideation is encountered and has been reported.

--------------------
life shrinks and expands in proportion to one's courage
-- anais nin

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tpap1006
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I had auditory hallucinations, and some visual disturbances during the months after i had been bitten when all my symptoms were raging, maybe he's pointing at something in his visual feild and "shh"ing an auditory hal.? new at this- just sharing my weird experience.
my prayers'
Trace

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Mo
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i'll add more articles, probably tomorrow.

some of the research published goes only so far as to say lyme can "exacerbate existing tourettes"
but, in my son's case and the doctors clinical view, and because the facial tic, rituals, vocal
"tics" resolved with abx alone - no psych meds were tolerated by him medically at the time -
(and interestingly, many of the above symptoms did not return with his relapse, specifically)

..conclusion is that tbd's can mimic or cause those symptoms via infection/inflammation in the centers controlling these behaviors.

there are allot of symptoms i didn't write above,
far too many to list, and things went in phases as he was treating.

the ocd presented in ways in which he had illogical fears that if he did not do things a certain way, he would die.

(ie: touch the light switch three times, only walk one specific path from one place to another, phood phobias: he was afraid certain foods would kill him. for weeks and weeks he would eat nothing with fat in it and there was no stopping this. he would insist on all kinds of crazy rituals (if not allowed them, he would go into psychotic rages) - these were real phobias, crippling psychiatric fear, hallucinations, panic attacks, seizure activity.
this was not "defiance", and clearly not in his control, at all.

the above is just a smattering and small window into the symptoms, and it wasn't a situation where we could control this in any way.
while he was in treatment we had to manage and support it (with the doctors). there is no hospital that would provide the care he needed. it was beyond intense.

he ran away from home on foot (15 miles on foot when he was thin and very weak) during one of the neuropsych herheimers and tore all the flowers out of the flower pots in the village of our town.
there were periods of vocal stuff, like constant throat clearing, constant hair touching, ect.

it goes on and on and on.
this is someone who, in his natural state, is extremely calm, intelligent, sensitive and reasoned.

your post reminds me of another symptom, he had very bad eye pain for a while, he had to use books on tape for school.

treatment rid him of all of this.

this time around, none of that sort of thing is happening. (?) now it is that awful insomnia, headaches (which he did not have years ago),
severe depression, outbursts (abating again on mino and rifampin), cognitive disorders, auditory processing - focus problems - music hallucinations

the symptoms this time have been quite severe, but specifically only a transient tic (went away on initial abx of rifampin and mino), no full-blown ocd (some mild stuff in this catagory), no anorexia.

he has different looking SPECT scan, so probably different infections/loads/locations.
in the brain, the centers and pathways are intricate, and small physiological differences can have huge effect.

to answer your post,

yes, i now remember that there is an issue with age and minocycline, you can ask doc j about that.

(and you don't have to thank me, this is a very difficult road you are on, even amongst a lyme support board, this kind of presentation is severe, somewhat obscure, and extremely overwhelming to deal with)

as far as rifampin, i recall the docs do not want to go to that drug unless the others fail, which based on your description, there has been some improvement, and some things worsening.
important to highlight both, and i did have to advocate for the start of rifampin with symptoms and literature. we could see right away (as you see with your one son) that it was impacting the infection.

i would think an earnest discussion re:trying rifampin on your other son is warranted.

as far as the angry rifampin herx, yes, it was evident in myself, my son, and my toddler.
we all started it around the same time, oh what fun that was... even my sweet two year old was yelling and screaming like a banshee at times.

i remember it was a matter of weeks, between three and four, before we saw that turn around in all of us. following the angry herxheimer, return of "personality" began, bit by bit.

toddler, by the way, was treated with rifampin/zithromax rather than rifampin/minocycline.

rifampin is used in infants and children, for at least nine months, for tuberculosis. it's strong, but safe and effective.

you will need to run liver panels to make sure there is no liver toxicity. we never had anything show as elevated.

i'll pm you the doc in nj who specializes in bartonella and mycoplasma. he is a good adjunct to go along with a primary LLMD. i think mainly for adults? perhaps he would eval children if you run into the need.

hey, hang in there, treatment can work wonders, especially in the littler ones.
it will be a long road and complicated, but you will see the changes and you will find the combos that move things along in a better direction.

my son's case was extremely severe when he was younger, about as bad as it gets -- and he did very well, considering.

my toddler, even better (took about 2 1/2 years)

now my son's case is much harder to move - age is a factor, his symptoms were so severe he was hospitalized for months, because his age makes those symptoms he does have very dangerous.

there is a compliance issue we did not have before (treatment wise) - but over the past eight months of excruciating (and very lonely!) experiences, i have seen that he has finally been mentally "reached" to treat and he is slowly improving.

god-willing, he will stick with it and we will find what he needs to accomplish this.

i am busy with dealing with much needed additions to abx for him at this time.

mo

[ 04-02-2009, 02:00 AM: Message edited by: Mo ]

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