Please respond with anything you think would be helpful regarding JC.

Despite the fact that my tone here is matter of fact, I feel like I have been in an emotional, mental and physical marathon that has no finish line.

I know everyone here can completely relate to that.

I need help.

Our appointment with Dr. F, LLMD Psych of Columbia is in 2 days. We see Dr. J in 2 weeks.

Since JC has been on rocephin and zith, many of his global physical and cognitive Lyme problems have improved.

I am unbelievably grateful JC's following symptoms are getting better:

constant low grade fever

circular face rash

chronic swollen lymph nodes

chronic exhaustion

loss of bladder control

diarrhea

non-response to stimulus, autism, vacant stare

hiding under tables, chairs

constant stuttering, stammering

inability to complete a sentence/speak

inability to "think"

inability to answer questions/converse

severe memory impairment

tics, Tourette's like vocalizations

For all this, we are blessed and do not underestimate the progress.

However, there remains and has been an escalation of severe deficits in attention and impulsivity.

I have no clue as to how much or little of his situation is due to TBD, but I do know we never saw anything of this degree until this past year.

He is again, as he used to be, quite bright, energetic, inquisitive and extremely motivated to pursue academics and projects all day long. I'm talking morning to bedtime, 24/7. Science, reading, art, music....

However, he only functions well as long as he is in a one-on-one, highly interactive environment.

Ie; he usually can't play/do things by himself in spite of the fact that his brain is working very well and is in "DRIVE". His frustration is exquisite.

Unfortunately, most of the time he is unable to pursue anything (including simple activities like tv, computer, toys, coloring, etc)without the aid of another person there to "anchor" and continually redirect his focus.

And that person is usually me.

Often, he is like a vine, clinging to me, and fussy and cranky when I have to put my attention elsewhere.

The separation anxiety is intense.

When he is feeling "well" he is around and about, happily singing, playing the piano, doing science and art projects, etc. non-stop without a care in the world.

He is only "well" about 10-20% of the time.

At school, his need for one on one attention, continuous interruptions and off topic rambling are so intrusive it is impossible for the teacher to teach the class.

He is UNABLE to maintain quiet interest/attention in a group setting. This includes sport activities.

Btw, his teacher is extremely nice, accomodating and kind to JC. She is also aware that he is very sweet and smart and that it is non-volitional.

However, because of this overwhelming interference, he is only permitted to attend school for a few hours a day.

We have been unable to find another school to take him. We are loking at the IEP, etc. but know from good sources that our public school system should be a last resort.

He also LOVES recess and playtime. He gets along very well with his classmates. Many boys and girls at school want play dates with him. He is fun and kind.

In addition, since starting the antibiotics,
we are seeing distrubing NEW onset psych symptoms.

For the first time, he is having frequent, unpredictable episodes of inconsolable, OCD-like, floor-writhing, back arched, fists clenched crying and tantrums.

Anything can set it off: ie; the ketchup "touched" the peas.

The episodes can last for HOURS.

Also new onset night terrors and many bizarre neurological distortions of perception.

We have spoken to Dr. J about all this, co-infections, etc. At this juncture, he does not want to add anything new to the abx mix.

Hence, the appointment with Dr. F.

I would be grateful for any insights.

What causes this? Lyme, abx, die-off, herx, neuro-toxins,co-infections, yeast, immune response, predisposition or co-morbid diagnosis?

What is so baffling about all this is that he unpredictably cycles in and out of completely high-functioning and normal and totally NOT.

Forgive me for being so boring, pedantic and monotone; I'm really just overwhelmed. I hate not being able to "fix" this.

Thanks in advance

love,
andie & JC

I don't have any answers for you. I hope that Dr. Fallon will. The only thing I can think of, is can you help JC form an attachment to a specific, benign, self comforting behavior?

It would have to be trained in, probably in relationship to you, with a very gradual withdrawing and allowing him to make use of it more and more on his own.

Soem music that he loves, or a song he can sing, first with you, then on his own? Any kind of soothing, safe, ritualistic behaviour that he could use to overide the tough times?

I have no idea if it would work for him, but I use a version of this for myself when things are particularly tough. Now just turning on certain music lowers my heartrate and breathing.

My best to you!

I don't know if it's any comfort to say this is so familiar to me..other than to share that this therapy eventally rid my of a great percentage of his symptoms.

As far as considerations for causes of what's happening now..Ryan was initially on Rocephin and Zithromax, like JC, and had many of the same symptoms and response.

In his case, it was clearly die-off related. I imagine neuro toxins were an isue, but definately not a major player at this time in his therapy, as this was Herxheimer for Ryan. Dying Bb.

One thing I would suggest considering as far as another bacterial culprit is Bartonella.
In Ryan's case, the use of Zithromax caused initial die off of Bart, followed by whar seems as though the Bartonella being cleared of the blood and driven deeper into the CNS.

The utilization of Rifampin changed these Bart rage and severe ADD behaviors dramatically, after a couple of weeks of initial exacerbation of the symptoms.

It is tough to say if or when that med may be necessary (age is a consideration, though, very small children are on it for TB for many months, nine I think).

Doc's J and F will be able to best sort that out. In Ryan's case, we had to wait for the long episodes to stop (they did, so I think that for him was Rocephin induced neuro-Herx)

Once stable in that regard, Ryan was still left with anger, periods of removal from everything, and hyper inability to focus, concentrate.

Rifampin (for Bartonella) dealt impressively with that over time.

Bb and Bart together create psychosis in some.

I used music. I would play Andrew Weils healing tape (I think it is for brain healing) while he was sleeping. After a while, Ryan himself was playing Long and Winding Road (J. Lennon) on continuous play all night while he slept. he did this fot months. Picked that himself.

Recently he has relapsed, and I heard it playing last night for the first time in a loooong time. Kind of chilling, but interesting that he finds comfort in that song.

As far as management..I did not find any safe or effective options as far as drugs were concerned, but I did research and use magnesium and trace minerals.

Bb is well known to deplete Mg. here is something on the efects of deficienct on the brain:
http://www.mgwater.com/dur30.shtml

I used liquid ionic Mg and trace minerals ..put in drinks throughout the day. Next best thing to IV Mg, which is probably more the level they need..

I also used this:
http://adhd-becalmd.com/ingred.php?id=5758GA

..but can't use if on any SSRI's (because of the natural seratonin elevation in this)

It sounds to me like you have a great school. I know you didn't want to take him out because he loves it so, but you may need to think about it. Maybe there is some other activity he can handle at a certain time of the day to get out, while taking a recovery hiatus from school? Just a thought. my son had to be out a year with a tutor, out again with the relapse from surgery..but..JC is so much younger..may well not be as long (?).

As hard as I KNOW it is, you must try and hold onto the fact that woth continued treatment with Doc J, this will all reverse. It will one day be a memory.

I know that doesn't make it much easier, but is what I survived on. I remember all too well the times of literally falling to my knees between episodes, or usually once he was aleep..

and being much like you in coming here composed and gathering information (and support) from the great members on this list.

While life was indescribably difficult for my son amd for me to care for him.

You'll bring him through. He is responding ((!))
His lucid times will grow longer..until the first day there is no episode. Then there will be a week..then no more. Promise!!
Young Master JC will emerge just as wonderful as you know him to be!

Do all you can to take care of yourself when he is sleeping..bath, reading something other than medical info..watch a film..meditate..easier said than done, but could help.

This is an incredibly, incredibly difficult time for all of you.

Huggs from us,

Mo

Although herbs and supplements have never been cures for Lyme, they have helped with neuro symptoms. A few that come to mind are coptis herb, CoQ10 for energy (high quality brand only), L-theanine for anxiety, and anti-inflammatories for moodiness. Two other helpful supplements are NAC to help the liver process abx and remove toxins from the body, and alpha lipoic acid as an antioxidant.