Its been awhile.

Our valiant little soldier, JC, is still hanging in there.

JC, who is now 7, has late stage neuro/cog lyme. After months of futile efforts to improve on amoxy and augmentin, he started IV rocephin last July. He had zithro eventually added, followed by rifampin for 3 months, and flagyl from Nov. forward.

Although we initially saw big improvements in his physical symptoms, by Dec. his cognition and neuro symptoms had only improved by about 25%. After that he began to decline again.

The first psychosis of his life was in August followed by intermittant episodes for which we gave different psych medications to try to give him some relief.

Despite this, he eventually had a total breakdown in March characterized by a severe, unrelenting, violent psychotic break.

His psychosis was resistant to any psychoptropic medications and he eventually developed lithium toxicity and diabetes insipidus.

His gasping panic attacks revealed an irregular heartbeat and severe damage, incompetence and scarring to 3 of the 4 valves of his heart.

He spiked fevers of up to 104.

We pulled his line and stopped all abx in April.

He remains on several antipsychotic medications.

We have only just recently begun to see the psych symptoms resolve and a return of a sweet, gentle little boy who is not cowering, sobbing or attacking in feral terror.

We are back where we started more than a year ago, though war torn and weary.

What to blame for this horror? Lyme? Coinfections? Toxic reaction to rocephin, zith, rifampin, flagyl, psychotropics? Genetic predisposition to bipolar/adhd? All of the above? Probably.

Where do we go next?

I'm not sure.

He still has lyme; nearly every band. He has genetic immune impairment. He still can't cognitively function, play games or sports without one-on-one help.

He is too young for oral "cyclines", I'm convinced Flagyl made him crazy and macrolides alone did nothing for him.

He consistantly tests negative for coinfections but I don't believe it for a minute.

He goes for his second round of IVIg infusions this week. He hates needles. He goes through two days of 8 hr infusions anyway. They seem to be helping.

Because his picc line is now out, he went swimming today. He said, "Look at me, Mommy! and put his face in the water, blew bubbles and came up laughing.

Today was a very good day.

He used to be a normal, bright little boy. Now he's my hero.

Love to all. We've missed you.

andie & JC

Don't know what to say to comfort you, but I know how do you feel, I also have a 7 year old under Lyme treatment, he probably got it from me since birth.

As I was reading your post, tears rushed to my eyes, you are so right these kids are heros and I know they will make it.

HANG IN THERE, remember that for them we
-the parents- are their heros and they need us to make through.

So, so sorry to hear all you & JC have been through, but sounds as if things are better. Will pray that he will continue to improve.

How's your daughter? If I remember correctly, her name is Julie & she's about 15. Such a lovely young lady!

I remember so well the morning we met in Dr J's office. What a joy to have a short visit with you & your children!!
I've been inspired by your strength & persistence when faced with such adversity.

Sending lots of hugs and support to a wonderful family!!

I knew nothing of your situation before, I am sorry for all you have to deal with with your son being ill. That must be extremely hard, esp. not knowing what is causing what.

I don't know what to really say and can offer no advice, but I am listening.

My prayers are certainly with you. Some do have a very difficult course to follow in treatment, and there are no easy answers on what to do. It breaks my heart to see a child go through this.

I know you are doing your absolute best for him. I hope you are able to reserve some small amount of care for yourself as well.

I do so hope the IVIG works well and soon for JC, and provides a pathway out of this quagmire.

How about you? Last time we heard from you, you were starting treatment too?

How are you? Last I remember, you had started treatment?

It ocurred to me when we were going through this - I had found a bunch of abstracts on IV Magnesium being used sucessfully in mania, and other severe psych conditions.
(and Marnie's research all points to IV concentrations helping Lyme)

Doc's J and K wouldn't go for it at the time and I would have sought it else where, but then we started Rocephin and Rifampin and just had to hunker down for the big storm, but I wonder since JC can't do abx right now if they might not consider it, if you thought it was right..
but then I also read you said JC hates needles..
don't know if it can be administered the same day as his IVIG..
the IV route is thew one used in the studies on psych conditions..
but I do know there is one Doc in Florida who uses a sublingual form (may be able to get it from him via Doc J or K as I believe this Doc is somewhat LL)..
sublingual concentrations may be almost as good, and he uses it for psych disorders.
Goy to get his name..I have in my files.

The only other thing I think of is Bartonella. That was a major player for my son in these symptoms, but Lyme was an equal partner.

You guys are going through Hell this year, but I know you'll pull out of it.

Hang in and one X-tra hug to JC and Julie from us.

Mo

It is wonderful to hear from old and new friends. I've missed you all so much and have thought about you the whole time.

Lymster, I'm so sorry both you and your son are sick with Lyme. So many of us seem to be in this situation. What is your little boy's name? How is he doing? How are you?

Your warm words let us know that we're not out here alone. And the fact that you reached out to a stranger despite your own troubles is an inspiration and comfort. Big hugs and kisses to you and your son.

Carol! Thank you for your prayers; you and your family are in mine, too. It's been quite a year hasn't it?! Big hugs to you!

How are YOU? What is happening with your grandson Patrick? Last I heard he was in the midst of recovery but hanging in there. Any progress? Please let me know how you and family are doing, ok?

Julie, 13, still has Lyme. Fortunately, it seems to respond to abx pretty well but she struggles with tolerance and yeast issues. Her symptoms return if she goes off tho so we're two forward, one back there. I'm so proud of her. She's very caring and mature for her age; she's been through a lot...

DLL, How could i forget that screen name! Thank you for your post and listening. Yes, you are right. Not knowing what is causing problems has been horrible. Poor JC!

Karen, thanks for the post and hugs back to you!

Michelle, thank you so much. Yes, all these kids are really amazing, aren't they?

River, so great to hear from you! How have you been? Please let me know.

I know, JC's case has been a forensic and emotional nightmare. Kinda like being lost in the wilderness. For now we've made the call to just stay put and regroup.

We have no idea what exactly he experiences but whatever it is really scares him. He just clings to me for dear life and looks up with those big brown eyes. I spent months this year just holding him, rocking him, telling him he was safe and that it was going to be ok.

JC really is brave. That he keeps trusting is nothing short of a miracle.

To see him actually laughing is a joy beyond measure.

Minou...hugs!

I know, I hope the IVIg keeps doing whatever it is. I don't understand the whole mechanism but have some intuitive observations thus far.

Besides immune changes going on and perhaps neuronal/hypothalamus repair, I also think the process helps flush a lot of toxins out of his system.

The week following his first infusions, he spiked a fever and went downhill physically, cognitively and psychiatrically. After that, things started to turn around pretty dramatically. No real cognitive improvement, but the horrible psychosis is gone.

My standards for recovery have changed.

Even if we can't ever get JC "back" completely, even if he can't do all the things other kids take for granted, at least if he's emotionally stable he's got a shot at having a life.

We do another round this week so more will be revealed. We're praying, too.

Yes, I got slammed by Lyme too and was out for the count for a couple months there. Now I'm muddling along in the very tired, migraine, vertigo, migrating pain, heart stuff lane. I guess the worst is the fact that activity makes me dizzy and my chest hurt. I'm going to go for a heart exam.

Mo!! I know you are on the right track here. He needs gentle support and repair, emphasis on "gentle".

Please help me with the whole Mg thing. I must say I'm afraid of anything too strong at this point. Even supplements. I've seen JC get hyper/agitated on certain B vitamins. I've seen that I have to be careful with certain omega oils. He'd probably react to ginko as tho it were crystal meth.

I think he's got major toxic overload, inflammation and what amounts to a closed head injury. I don't think we can even begin to address the "cognitive" or increase blood flow without doing some repair work first.

Anything that soothes, calms, repairs. Maybe the sublingual Mg. What Bs? What else? We need Mo, Minou, River, Gigi and Marnie! And anybody else who has ideas, of course.

That Bart...JC really was better when he was on the rifampin....We did a 3 month stint. Have to talk to Dr. J.

Hugs and kisses to you, Ry, the Divine One (and even Gracie! eek)

Cigi, You're so good to write. I know you've been feeling awful lately and I'm so sorry!!!

The lyme and the med combos can pack a punch and its so hard to tease out the culprits when we're having symptoms. Re: JC, we and the docs still don't know!

Please know my thoughts and prayers are with you and your son, too. When I read everything you are going thru I worry...please take care and be gentle with yourself. You're a trooper. Thank you so much for your posts; they've helped so much.

Later and thanks,
andie

Mo

Magnesium and Affective Disorders

H. Murck

Laxdale Ltd, Stirling, UK

Abstract:

There are several findings on the action of magnesium ions supporting their possible therapeutic potential in affective disorders. Examinations of the sleep-electroencephalogram (EEG) and of endocrine systems point to the involvement of the limbic-hypothalamus-pituitary-adrenocortical axis as magnesium affects all elements of this system. Magnesium has the property to suppress hippocampal kindling, to reduce the release of adrenocorticotrophic hormone (ACTH) and to affect adrenocortical sensitivity to ACTH. The role of magnesium in the central nervous system could be mediated via the N-methyl-d-aspartate-antagonistic, n-aminobutyric acidA-agonistic or a angiotensin II-antagonistic property of this ion. A direct impact of magnesium on the function of the transport protein p-glycoprotein at the level of the blood-brain barrier has also been demonstrated, possibly influencing the access of corticosteroids to the brain. Furthermore, magnesium dampens the calciumion-proteinkinase C related neurotransmission and stimulates the Na-K-ATPase. All these systems have been reported to be involved in the pathophysiology of depression. Despite the antagonism of lithium to magnesium in some cell-based experimental systems, similarities exist on the functional level, i.e. with respect to kindling, sleep-EEG and endocrine effects. Controlled clinical trials examining the effect of Mg in affective disorder are warranted.

*******************************************

Psychiatry Res. 2000 Feb 14;93(1):83-7. Related Articles, Links

Magnesium oxide augmentation of verapamil maintenance therapy in mania.

Giannini AJ, Nakoneczie AM, Melemis SM, Ventresco J, Condon M.

Chemical Abuse Centers Inc., 721 Boardman-Poland Road, Suite 200, Boardman, OH 44512-5105, USA.

The authors compared the antimanic effects of a verapamil-magnesium oxide (V-M) combination with a verapamil-placebo combination (V-P) in patients pretreated with verapamil. BPRS scores and serum magnesium levels were compared. The V-M combination was found to be significantly more effective than V-P in reducing manic symptoms (P=0.015). Serum magnesium levels were significantly higher in the V-M group (P<0.04). These data suggest that magnesium may increase antimanic efficacy of verapamil by mechanisms which may operate at the intracellular level. The magnesium-verapamil combination may have clinical application as an adjunct to verapamil in the maintenance therapy of mania.

********************************************

Just two quick ones..
something interesting to me is that there are several referenced in PubMed in the 60's and 70's (therefore text and absracts inaccessable, at least over the web interface so far as I can tell)
but there are SEVERAL linking various episodes of psychosis to an Mg disorder.

If Lyme and meds and toxins and other deplete Mg, I do wonder if this (IV or sublingual) can be a helpful adjunctive measure in neuro disorders from infection and treatment.

Mo

Magnesium is being used for such a wide range of things, if you can figure out a way to get it in without stress, it seems it would be very good. Also for you. When I was going through this last winter, with terrible migraines, IV magnesium was the only thing that made a difference.

I have a few more thoughts for you, will send you an e-mail. Wanted to boost this for more input from others.

Thank you. This abstract is one for the Lyme files.

Interesting bit on the interaction with lithium there, too. It definitely had a calming effect on JC when he was on theoretically "sub-therapeutic" levels but he got into trouble when it got higher.

If Mg and lithium have similarities at a functional level but "lithium is a Mg antagonist" (and we know flagyl increases serum lithium levels), then the med combo/lyme, etc. may have contributed to a deficiency and challenges to the limbic/hypothalamus/pituitary/adrenocorticalaxis.

I'm also curious about the hepatic load of all this stuff and the build up of toxins.There is quite a bit of material on encephalopathies resulting from hepatic insuffciency and the chronic recycling of toxins.

In the event the flagyl was a culprit in his psych problems (irrespective of the presence of bartonella) rifampin reduces levels of flagyl and may have provided some protection while he was on it for those 3 months.

Just some misc. ideas.

Thanks for the great info!!

andie

You said the magic word: MIGRAINES! Now I remember you said you get them too. Nasty business. I'm so sorry!

So you say the Mg got you through? that is awesome. Hook me up to that good stuff now.

The only times I've been on IV narcotics is when I was in posterior presenting labor for a few days and... migraines. You know you've got a problem when the idea of a power drill sounds good.

Where, how does one go about getting this stuff?

I have to admit, it didn't stop them completely. But I now know that I spent my winter exposed to low level sewer gas (methane) and also mold. I don't think anything would have stopped the headaches from that combo!

However, IV magnesium made the biggest difference of anything I was doing. I had a PICC line in at the time, so I was able to give myself the IV every day. That was the easiest and the best.

Mo mentioned sublingual, which is very intriguing, as I no longer have the easy access to my veins. The migraines are under control, but I still have other signs of magnesium issues. All the heart issues, palpitations, etc, can be magnesium problems.

Some of us just can't absorb enough when doing oral supplementation. But sometimes all it takes is to be sure to take your tabs. It is surely worth a try.

For IV or IM, you have to have a doctors script. Usually naturopathic doctors are familiar with doing the IVs. But if the sublingual Mo talks about works, it would be much less expensive, and more under your control.

OK, I think I'm rambling. I must be done. Hope this helps. I know the bit about the drill. I was kinda for major smashing of the whole head, myself.

Good to see you!!!

How about Babesiosis?

Keep taking good care of YOU and those precious little ones.

You are wonderful!

------------------
If you get the choice to sit it out or dance...

I'd been wondering where you were.

So sorry about JC, we are going thru almost the exact same problems with Aaron right now so i can very much appreciate your pain, stress and sadness.

You and JC are very strong, you will get thru this and as you said, he may not be the same boy you had or the one you expected but he will/does have such strong character just like his mom.

I wish you much luck and some peace.