Spent a year out of school with a tutor, and just started back this year.

Was progressing well, and suffered set back along with stress of going back to school..was looking like that was leveling off..

Then last week had an appendectomy.

Apendectomy required going off IV and three orals for TBD's, doing an IV drug called mefoxin pre and post op..and now Doc J is slowly adding each of the TBD meds back in slowly.

He is to do two days or so on each one, one..see how he is..and then add another.

Seems to be healing from surgery..but is hard to tell where that leaves off, and impact on Lyme and other picks up.

First two days (starting two days after surgery) he started back on just Rocephin. Seemed OK, but tired and foggy.

Next two days, added Minocycline. Second day on Minocycline, and he is exhausted, but also with huge dark circles, extreme brain fog, and irritability. he felt this coming on yesterday..

Looks white as a ghost, a friend he goes to school with (I don't think was malicious..just very insensitive, inconsiderate) told him he looks like he has AIDS.

Home today..just went back upstairs and still sleeping.

I guess as I write this I know it makes sence that there would be a crash.

Times like this I welcome any suggestions, or shared experience..

On surgery when partially treated, on aggresive therapy..and it's impact..

and stopping and re-starting a heavy regimen like this.

This poor guy has been through the ringer. Needs to support him in avoiding a huge crash, if possible.

I'm so sorry to hear that your son is going through all this.

It breaks my heart to hear when a kid has this rotten disease.

It does seem to make sense that he would feel like this. Stress of surgery along with starting and stopping meds. YIKES!

All I can say as a Mom is TLC and pampering and maybe a little surprise may lift his spirits

My thoughts and prayers are with you and your son.

I'm thinking of him (and you, too!) and praying for a speedy recovery from all this.

--Annie

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``The best way out is always through.'' -Robert Frost

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I'll be pulling for him,and the rest of you and yours.Better days ahead for sure.He sounds like a super kid!Tell him he will get over this surgery soon and this stupid lyme.He's pointed in the right direction and that's what counts!

You tell him I said to hold his head up HIGH...he's stronger than alot of kids his age and he will be running circles around them soon.With his big heart ..he already is!Ask him when he has time ,can he draw me up some plans for an herb garden..doesn't he know alot about this? I need some help!

Mo! you are doing a great job..never doubt that.I am perplexed everyday how a little thing,tick,could invade and change our lives so much.So,we are behind you!

Since your little boy is not well to begin with, it is going to take much longer.

SLEEP SLEEP SLEEP and good nutrition is good right now. Also dont forget to aid his body with antioxidnants to help him remove all that stuff (lymechetes, anesthetic, other bacterias from the surgery).

My kids usually take about 3 weeks to "bounce back" then another two months before they are "really great" after a surgery like that. (my son got a hernia which needed surgery...and resulted in a touch and go existence for a while)

DO WATCH FOR FEVER. It seems like my son always gets a post surgical fever, associated with an elevated WBC (56000 one time) and needs a different type of antibiotic that his "norms".

You are a great mom...keep your chin up.

I'm sorry to hear that Ryan is feeling so ill.

My thought is to take more time with the adding back the meds. Maybe go a week between each med. (Dr. C is really big on adding meds slowly.)

Do you think that Ryan may need more time off before he can go back to school? Could he get a tutor for a few weeks? (I do remember that his school wasn't cooperative.)

Jake had his appendix out at the start of the school year in 2002. He had been in school a few days before his surgery and then had a hard time going back.

Jordan was going to school for 2 classes this year. He was at school about 2/3 of the time. He got a virus last week that turned into a sinus infection. He hasn't been at school at all this week.

We take it one day at a time, which is really hard to do.

Ditto on the comment about general anesthesia. It does nasty things to your body. I had an internist who had CFS and needed surgery. She shut her practice down because it takes her 1-2 years to get over the anesthesia! This is not my prediction for your son, just to say that it's impact on the body can be great.

So lots of rest, fluids, good food and TLC.

Hope this passes very soon.

I am very sorry about your son. I know how it is. Right now I'm too sick w/lyme+babesia to attend school. He is lucky to have a parent like you. Having Lyme is boring and lonely especially for kids.I hope he gets better soon. If he goes back to school and gets good grades and writes about overcoming Lyme in his college essay, then colleges will really like that. The fact that he can go through this as a kid shows that he has character.

Thoughts..

I won't comment on all the drugs he is getting now.

However... I do have a surgery experience that might ring a bell. It is a cheap way to go... and so very much needed.

Several years ago, after surgery, I went down the tubes BIG time.

Long story short..

The nitrous oxide and meds used to make me sleep... they were HORRIBLE.

The ONLY relief was to get an oxygen tank and use it daily... low flow setting.. one hour a day.

This "flodded" the system with oxygen.. which pushed the gases and drugs from the cells. For some reason my body needed more than the short amount they give you after surgery. Maybe my cells weren't "fast" enough at clearing out the garbage? Anyhow..

The nitrous oxide was deadly for me.

I got so depressed.. a violent depression.. and not just a little.. but suicidal and homicidal both. I was so very weak and unstable. Talk about a shock!

Of course, being in that condition is normally NOT like me.. so I knew it had to due with one of the drugs they used.. but it took a LONG time to figure it out.

The oxygen gave me my life back and made me MUCH better within a week or so.

I used it on and off for a couple of months afterwards.... and eventually was fine.

It cleaned up the system.. and got me back on track.

Just something to consider.

My choice at the time was to use oxygen... OR a minimum of 6 months of anti-depressant drugs they wanted me to go on.. which I DID NOT want.

Hope this helps.

How to know what's from what is near impossible. There has definately been another level of a hit since starting the Mino..but who can say that's not residual from all other as well.

The anesthesia issue..thanks for the input on that. I hadn't included that in the picture enough till now.

TinCup..do you know if nitric oxide is always used in general..or if it would be helpful for me to find out what they did use?

Oxygen to help clear it, if it is a problem, is very interesting.

You say it's cheap..I would hope oxygen would be Never know these days..

Should we need it..do you need a prescription for oxygen? How is it administered..through a home unit I guess?

Not sure we will need, but this rings a bell in my head at the moment, and I should find out a bit more about how to attange it if it can help.

I will also talk with Doc J about the abx's..and any input he has on the rest of it.

Allot of things can be causeing this fog and mood and fatigue, or could be a little of everything. As some of you may remember, he has a history of having had a monster HUGE crash that ended up being mostly Lyme and Bartonella, at that time after a very stressful event, so..I am not feeling so comfortable when I see him sliding now..

I wish it wasn't so darn hard to figure out at least what is causing it exactly!

Pab..we may have to think about home school again. He is so resistant..was SOOO glad to be back, just wants to be "normal"..but..one day at a time as you say.

the school is great staff-wise..but the administration is adversarial. I am still in the middle of Ed. attorney advocacy to get Ryan an IEP. Big battle there (Lyme controversy/denial plus he was hurt at school)..now this. But..no matter all that, the school is definately not my top concern!

Mo

She has missed two days due to herxing.

Another day she had a major anxiety attact over a test..I had given the nurse two Valiums and she had to use half of one. Then Becky was able to stay for her other two classes.

I offer my prayers, and hugs-gentle ones. Keep the faith....you will all put this behind you eventually.

Just imagine a healthy household...just imagine a life without pills and drugs and IV's...and watching your son like a hawk. Just imagine....

All of these things will come true in time. It may take a long time, but being sick is better than being dead....I remember wishing I were dead-but for my children and family I had to keep going.

Maybe you could watch some funny movies together-something that will take your minds to a different plane...

Healing will come Mo. Just believe...and pray. You are so fortunate to have a wonderful doc, and tons of support here. Keep venting to keep your sanity. you know that no one gets sick of hearing from Mom's in pain. Make some different posts on updates so this one won't get too long, and people will go right to it.

I'm so sorry to hear that your son has been feeling worse again lately. It makes me sad when I read about it... I can relate because I worry about my little guy Caleb.. even though we went up to Dr. Jones... and he said he thinks he doesn't have an active infection and just to watch him.... its so hard when its your child... the last thing you want to do is see them suffer in any way. I'll hold you and your son in my prayers.. how are you doing by the way and your little girl? I haven't posted much lately, but I remember when you were kind enough to send me info on Dr. Jones.......

Take care and hang in there...your an awesome mom, I can tell!

Dr. Jones has goten back to us, and he thinks, based on all the info..that this time (he often tells us when he feels something is not infection related, which I was hoping to hear!) he feels it is a relapse of TBD's from impact of the surgery and being off meds and the rest of it. He did also say some of the effects of general anesthesia could still be there as well.

Thye have had me call after two days on each med..so now that he sees this response/condition..he wants him on the nedications for one week at least before adding each of the others back in..once he is stable on Rocephin and Mino..than add the next.

He says he sees this happen in many of the kids with surgery during treatment, and when he does, he slows the meds down allot if they are reintroduced.

Thinks it is flare..and die off.

Understandable..just really hoping we don't get the really bad stuff back again.

Uuuuuuuuuugh!! (Id've cussed just then, but it's against the rules.)

Wants him out of school till at least Monday as he adjusts..and take it from there.

Got to hope for effective support and stability for him!

Mo

Just when the poor guy seemed to be catching a break.

I'm so upset for him, you, the whole family.

I know that "ghost white, black circles" look you are observing so well! And just as you describe, also that sense of something "brewing".

I feel at a loss to give medical advice here re: the meds. I respectfully defer to others here far better acquainted with that.

But, I do know pre-op conditions and immune system integrity play a huge role in tolerating surgery and post-op recovery. Not to mention handling the effects of anesthesia.

Forgive me in advance for saying something that might be boorish, obvious or just plain off target.

But...

One thing you mentioned that struck a loud chord was the inevitable cycle he had of going off and then slowly returning to his Lyme meds.

As you recall, just this weekend, my DH "forgot" JC's meds on Saturday. When they were re-introduced on Sunday, JC had a volcanic herx. Those keets had only about 24+ hrs of an "all clear" and they were out in droves!

I was stunned when I saw for the first time how incredibly opportunistic, fast and stealthy Lyme can be.

For your son, what better time to come out of the woodwork than when he's being challenged by:

returning to school (exciting but tiring)
a raging infection (his appendix)
removal of the meds holding the Lyme at bay
an invasive operation
and a hearty wallop of anesthesia to boot

Now, if I were a gang of crafty critters, this might very well look like just the time to make a reappearance....

And now they are being engaged in warfare by their old adversary; the anti-lyme cocktail.

The mom in me wants to make some chicken soup and bring it over for both of you, fluff your pillows and tuck you in.

Maybe a nice sachet for mom and perhaps a cozy toy reptile for our budding herpatologist to snuggle up with?

I think recovery time for everything is exponentially longer with lyme.

I also think the people who have it and the people who love them should have extra TLC in the same measure.

I'm thinking of you all tonight.

love,
andie

ps: Happy Day After Birthday to the Divine Miss Em.

We are still homeschooling and Max isn't happy about that, although he has two wonderful tutors. He's taken a downturn lately and we're again in a quandry about what to do.

But, I just wanted to offer you support. I know how those fears really kick in when you see him going downhill. You've both been through so much and when it was bad, it was really, really bad and it's hard not to worry.

You've had good advice and he probably needs a slow course and lots of support. The oxygen sounded like a good idea, but if you can't get that then maybe he could do some deep breathing every day.

I was recently reminded of the importance of this and it can make a real difference...oxygenates the blood and gets you to relax and focus.

Also, the post from Trece...I really enjoyed your post - you have some great insights to offer - thanks!

Will pray that both of you receive the strength to get thru such difficult times.

Will be watching for updates on how he's doing.

I'm so sorry that Ryan is going thru this and so sorry for you too. I do hope he is starting to feel better.

Kaitlin just went thru tonsilectomy /adenoidectomy last week and it has totally wiped her out much worse than 'normal' kids. I have no idea if her lyme is the reason. But I do know that the anesthesia definitely is so much worse for those poor lyme kids.

I just hope that Ryan will start coming around now - I am thinking of you guys.