Need Help...Still Struggling

[Mommy2MCL]

It has been a tough few weeks. Seem to be in a flare and can't get out from it. We are thinking it was caused by a tooth breaking through to the surface. But she also has a bit of congestion so that could explain things too.

 

Mornings are tough and evenings can be too... Tonight she added a breathing tic and said she had a song stuck in her head (could be normal kid stuff but I have read that also could be a type of a tic)

 

Truth be told I worry myself sick about everything. Just as things get better this new stuff adds too it.

 

Does this seem normal?

 

We are treating Myco P

 

Numbers in December were

 

IgG 1574

IgM 1301

 

Numbers Jan 9

 

IgG 1189

IgM 1066

 

So we are seeing a drop in numbers but an increase in OCD and different tics... Many of her original have stopped.

 

We are taking 250 of Zithromax in Mornings and Zyrtec and Probiotic

 

 

Evenings

Vitamin D3

Vitamin C

Magnesium

NAC

Probiotic

Edited January 30, 2014 by mommy2mcl

[Mommy2MCL]

I will give her Motrin in the mornings but haven't been consistent. Should I be more consistent?

[Mayzoo]

The probiotic should be given 2 hours away from the zithromax or it may not be effective (abx killing beneficial bacteria of probiotic).

 

Symptoms can go up with successful treatment if you are having die off and she is having issues detoxing the die off. Charcoal two hours away from other meds, milk thistle, lemon water, etc can all be good ways of reducing symptoms if they are related to detox problems.

[Mommy2MCL]

Thank you for your reply! What an interesting concept... die off. I'm going to be doing some research on this.

 

As for the probiotic do you think I could give a 4 O clock dose & then an 8 o clock dose? With school I don't have 2 hours to spread in the morning.

 

And I just want to say that all of you on this forum are so wonderful. This journey can be so lonely. No one gets it. I am thankful for each of you and the knowledge you have.

[LNN]

250 mg of zith seems low - is your treating dr. open to increasing it? My kids were on 500mg. for lyme & Pandas

 

FYI - NAC isn't tolerated by everyone. It can cause neuropsych issues for those who are intolerant. Makes my DD flip out with bipolar symptoms. NAC made me depressed and elevated my liver enzymes. But it helps others. depends on your genetics. Try eliminating the NAC for a week and see what happens. it could be that your DD does fine on it. But its worth an experiment.

 

You can give probiotics once a day. Just make sure it's at least 50 billion CFUs. CP-1, Theralac and Kirkman's Bifido complex are all good ones.

 

My docs have always said to give zyrtec in the evening, as it can cause drowsiness. If she's ok with it in the am, you can leave it. But if she's complaining of fatigue, you can move it to bedtime. But do be cautious - long term use is not without risks. It triggered anti-cholinergic tremors in my DD a few times. She's now off it and only uses it in emergencies.

 

Try this schedule:

Morning - zith, vitamin C

Evening - D3, magnesium, 50 billion probiotic - take at bedtime when she hasn't eaten in awhile, so the stomach acids are lower and the bowels will be slower over night. It hives the probiotics a better chance of surviving the stomach acids and having longer to colonize the GI tract in a quiet time. (no physical activity or incoming meals to move the bowels)

 

The term for die off is Herxheimer Response - google that + lyme and you'll find a lot of info.

 

Also consider CBT and ERP tools. Search the forum archives for these terms. They're great tools to help kids cope with compulsions and fears. It may not eliminate the rituals during the peak of a flare, but they help kids feel more empowered and understand what's going on, less victimized.

[pr40]

only a slightly different response from the previous ones: slow and gradual change is the kind of recovery we saw. change in symptoms as well. so, I would say that it seems your kid is on her way to improve. transitional times are going to remain the more difficult then the rest of the day.

ocd book helps us with those -- dawn hubner's when your brain gets stuck. we read it with dd several times and then tried to practice it.

i noticed no fish oil -- see my other post on it. it seems to help healing

Edited January 22, 2014 by pr40

[smartyjones]

I have similar thoughts to LLM. may not be your issue at all, but my kids have had trouble with supplements that are supposed to be helpful.

 

ds11 had trouble with a high dose probiotic -- not sure if it was the high dose or the specific strains. he does much better with a lower dose of only a few strains -- can't remember right now, but it is HMF Forte. he has also shown through energetic testing that NAC is not something that would be good for him - have never tried it. may also have trouble with Vitamin D - was showing some troubles that have improved when I stopped it.

 

ds9 has had trouble with vitamin D that I still can't figure out. has had paradoxical reaction to GABA.

 

they have also shown herx-like reaction to treatments. for us, it has been fairly short lived. ds9 had extreme reaction once that included food refusal. other than that, has been ramp up in symptoms. I'd say I am usually willing to think herx for about a week -- maybe 2 -- but no longer. that is just my thoughts of our experience. I've heard improvement with charcoal is a good indicator of herx but have never tried it.

 

good luck!

 

 

[JoyBop]

I hunk it's encouraging that the numbers are going down. However the antibodies are still high. The way I see it, it's those antibodies that are wreaking havoc, so it makes sense you are still seeing a flare. Time and patience, you will get there. It sounds like you are doing everything right and the numbers are coming down.

[Teri]

Perhaps the Zithromax is not effectively getting to the Myco. My daughters Myco numbers sky rocketed while on Azithromycin. Dr. added Cipro which seemed to be the one for us. Her Myco numbers are high and didn't seem to lower too drastically. Maybe she needs a higher dose or an abx change.

 

Crossing my fingers for you!

 

Teri

[Dedee]

I'm going to give you my honest opinion (for what it's worth). If you are treating Mycoplasma (and those are some high numbers) with only 250mg of Zithromax you are in for a long hard fight. Your aren't dong much more than just fighting a forrest fire with a water gun. Mycoplasma is a stealth pathogen that invades multible body systems. See if you can google some of Dr. Garth Nicholsons work on Mycoplasma. It can take months to years to clear Mycoplasma and even then you may see relapse.

 

Also, Myco can be a co-infection of lyme. You may want to consider Lyme testing. Either way, LLMDs are the best at treating Myco P because they are so familiar with it. If you are only treating with one antibiotic it will be a very long recovery (again JMHO).

 

I have two children who have been treated for Mycoplasma. My daughter had Myco, Lyme, bartonella, and anaplasma. Her Mycoplasma titers are now in normal range. My son had Mycoplasma and Lyme. His Mycoplasma titers went into normal range after one year of combo antibiotics and I was so thrilled. However, about a year later he started to regress and was having depression and anxiety. We retested him and his Mycoplasma had re-activated.

 

You should see if you can find someone to give you a combination of antibiotics. At the very least you need a stronger antibiotic. Biaxin works well but you must be aggressive with dosing. I would find an LLMD. They know how to treat this beast.

 

Best of luck - Dedee

[Mommy2MCL]

Again, thank you! I am going to look into all of this. I think the best part is just knowing I am not the only one going through this... I am thinking a 2nd antibiotic or possibly a higher dose is in order. We are two and half months in. I will talk to the doctor too.

 

I am wanting to do CBT but our doc wanted us to wait until we had flares and things under control. Plus finding the right therapist may be an issue. Someone who won't make things worse

 

Again ladies thanks! Your advice and knowledge have been fantastic.

[chubbermommy]

Hi, sorry to jump in on this thread but I read something here - you shouldn't give a probiotic to close to the abx? What would you do in our case? DS is on abx 3x a day - so 7am when he wakes, around 1:30pm when he's home for lunch from school and around 7:30pm before bed. His probiotic says to take with a meal. Breakfast and lunch are too close to when he takes his abx. Dinner is around 6pm. Would that be time enough for the probiotics to do their thing?

[LNN]

Hi, sorry to jump in on this thread but I read something here - you shouldn't give a probiotic to close to the abx? What would you do in our case? DS is on abx 3x a day - so 7am when he wakes, around 1:30pm when he's home for lunch from school and around 7:30pm before bed. His probiotic says to take with a meal. Breakfast and lunch are too close to when he takes his abx. Dinner is around 6pm. Would that be time enough for the probiotics to do their thing?

I'd move the evening abx dose to 6pm just before dinner and give the probiotic after 8pm/bedtime.

 

I'm not sure what the reason is for the probiotic mfr to suggest taking with a meal. My LLMD feels they work best if taken at bedtime, away from meals, so the stomach acid is lower and doesn't kill as many of the probiotic good guys. Also allows probiotics to sit in a less active intestine, theoretically allowing better cultivation. Perhaps consider a different probiotic (ideally with Lactobacillus and Bifido strains) We use CP-1, Therlac or Kirkman's High Bifido complex.

[EveningRain]

I thought the timing of the probiotic wasn't important with regard to antibiotics IF the probiotic was yeast, like Florastor/saccharomyces boulardii?

[nicklemama]

You are correct. You can give saccaromyces bouillardi with abx.