PANS and lyme (?) help

[T_Mom]

I am hoping someone on this amazing forum can offer some perspective on this--

 

DD (13 now) had a very bad episode 2 years ago (after strep exposure during playdate.) Her symptoms were severe OCD, ticcing, academic failure, and then severe ODD. Episode lasted for 6 months as we appealed insurance for pex, finally did IVIG and all symptoms left within weeks. 180 degree turn around -- had a wonderful symptom free year last year. (Entire time on Azithro 250 mg)

 

Sept. 2012, starts next episode which includes OCD, ticcing, ANOREXIA

We do IVIG in October 2012...6 weeks later she starts eating freely again (right before she was almost hospitalized for anorexia.) HOWEVER, this time her OCD and ticcing ramped up after IVIG. We thought it was "turning back the pages" but it just continued and has not stopped.

 

January 2013 through Feb. her OCD, ticcing, and ODD raging have increased.

 

March 2013, Dr. adds Augmentin XR 1000 mg to the 250 Azithro (she has been on for 18 months+)

After the Augmentin is added she shows steady improvements for the next 2 weeks! -- then plateaus.

 

Bands 23 and 41 positive on Western Blot come back positive in Feb., so we go to see Dr J in Conn. last week.

 

Dr. J prescribed Tindamax, once a week at first--we have not started it as after reading we are concerned this could trigger worse raging and OCD symptoms!

Also, we only had two bands positive, and the results from Dr J (Igenex) have not come back yet--do we wait to see what the results indicate?

 

Should we do something else? IVIG, pex? Abx increase?

Classic PANS is what both kids have shown as over past 3 years.

 

She has been out of school now for a month--due to ticcing and OCD, and not being able to function at school.

Continues on Azithro 250 mg and Augmentin 1000 mg -- ideas? Help!

Edited April 1, 2013 by T.Mom

[Allie]

The IVIG will help support her immune system.

I guessing your doing lots of High powered Probiotics while doing the antibx currently? What about Alinia, have you ever used that ?

 

The antibx's you are currently using may not be what she needs for her lyme disease, so thats a coin toss.

What happens if you stop them? Does she get worse?

She needs supportive supplements, Magnesium several times a day. What other supplements are you using?

Acai is a good antiox to use several times a day. Elytrolyte water to drink as well during the day, sodium levels/ potasiumm all needs

to be kept up in normal ranges.

What are her Vitamin D3 levels? Those numbers need to be in the higher normal range.

 

Need to probably go Gluten Free with the Lyme disease, and No GMO foods! Get off Milk products too.

Can you start doing some smoothies, juicing raw friuts and veggies, its really important with lyme to get the good

enzymes. I would also encourage doing digestive enzymes with all meals, as her bio film is probably already in need of help

being on antibxs.

 

 

For OCD, what about using IP6 Inosine? Niacine too? ( I don't know the dosage for Niacine but it helps OCD a lot).

IP6 needs to be gradually added in over the course of ten days or so. Start at 500 mgs in morning, 3-4 days then add 500mgs at bedtime

then add 500 mgs at lunch time after a few days on it, and the max per day is 2,000 mgs.

You could also get a homeopathic remedy called Calms forte by Hylands - its not expensive and give it to her 15 mins away from food

before or after. Sometimes you need 3-4 tablets at a time. They can be crushed and added to water. No side effects or harmful affects taking this sometimes or all the time. All this can be found at the healthfood store

[LNN]

Oh TMom, I knew you were having a rough time of it but hoped things had improved.

How long until you get Igenex results back?

 

The lyme WB results look like it's at least worth doing the combo abx for the time being. Hopefully the Igenex results will give you a better idea of whether there are additional bands, in which case you'd have more evidence you were on the right track (or not). Until you have those results, it's probably premature to make plans for IVIG or Pex. So try your best to plan financially for some sort of medical expenses (lyme is a huge money suck) but try to not rush into something.

 

While you wait for Igenex results, read up on detox and try a few things. You know from past responses, your DDs behaviors are infection triggered. So whether it's lyme or something else, adding detox will help the body and help you feel like you're doing "something" while you wait for the results. You can go to google books and type "lyme detox" and get some good book excerpts. While not technically correct, I put my detox thoughts into 3 categories -

 

1. managing inflammation (not really detox but I put it in the same bucket) - resveratrol, motrin, enhansa/tumeric, anti-yeast supplement(s)

 

2. increasing glutathione (here's a great intro http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html ) - you can use alpha lipoic acid, NAC, others that I'm forgetting.

 

3. binders and liver support - milk thistle (silymarin) is great for liver protection. So is NAC. And with a heavy abx load, liver support is always good. However, if your DD has ever had trouble with any sulfurs (like gets itchy from epsom salt baths, has trouble with sulfur drugs like bactrim), be aware that both milk thistle and NAC are high in sulfur. (which 23andMe tells me is a problem for my DD). As you attack an infection, the dying bacteria often release toxins and create a herx. Things like activated charcoal, bentonite clay, psyillium husk - can absorb those toxins in the bowels and help you excrete them/not let then be reabsorbed.

 

I think I'd wait on the tindamax until you have some sort of detox plan in place (and by then would have Igenex results). And double check to make sure you give the proper dose. When we started it, I gave one pill per dose. Then found out three weeks into a horrible herx that I should've given 1/2 a pill per dose. Won't make that mistake again! Some people herx only for a few days and then feel much better for the rest of the week. My DS reacts strongly to it (even when I give the proper dose ) so we needed to go much slower. It's one of those abx that seems to be really good or really harsh for you. While you won't know until you try, it might go better if you're doing detox. Another option is to only do one dose the first weekend. Then 2 doses the second weekend. If she stays steady, build up to the 4 doses (Fri nite, Sat morning, Sat nite, Sun morning). You don't have to jump into the full 4 dose weekend. You can build up and you can also back down. No medals for killing the patient and the patient's mother in the process of killing the bacteria.

 

I've typed and erased other ideas. A small dose of niacin (50mg) helps my DS with rages and I feel ok giving it to him now because I know he's an "overmethylator" and has certain gene mutations that make niacin (which soaks up methyl donors) a good fit for him. But it's bad for my DD because she's an undermethylator and except for the time I overdosed her on methylfolate, niacin would be the exact opposite of what she needs for a rage. So at some point, you may find it worthwhile to do 23andMe so you'd have a better guide of which supplements would be helpful and which ones wouldn't. But hey, in the middle of a fit, it might not hurt to slip 50mg of niacin into your DD somehow and see. Depends on how desperate you feel. It's helped us more than once.

 

I wish I had better advice. It's such an individual situation. The next time you head up this way, let me know and I'll meet you for lunch and at least lend you a shoulder. Is she at least still eating?

[sf_mom]

I too would recommend holding off on Tindamax until you have better lab results and she is more stable. Tindamax can really stir things up.

 

I wanted to mention that your DD's antibiotic dosages seems low for a 13 year old and why you might not be making any progress with current combo. Our older son who just turned 9 is on 375 m.g. Azith, 2,000 m.g. Augmentin XR and 300 m.g. of Rifampin per day. If memory serves me correctly, our son is around 70 pounds.

 

Where is she with puberty? It is very common for Lyme to resurface at that time and wondering if that is also the potential cause for symptoms. Some believe it gets into the bone marrow and rapid growth can bring it out.

 

I think it would be worth it to call Dr. J to ask to double current antibiotic dosage of Augmentin and Azithro to see if you can't get her trending better.

[tpotter]

I would also be looking for mycoplasma pneumonia, bartonella and babesia. They can be responsible for the ragey behavior, and Ithink it would definitely be worth looking into it.

 

for the record, we did tindamax very slowly, and had inimal trouble (and were dealing with rages.) But, everyone is different.

[T_Mom]

Thank you everyone for the great feedback, I appreciate all of it.

 

From the natural remedy reminders -- to the use of Tindamax, thanks for your support.

 

I am so tired of feeling like once again we are spinning round to find an answer.

 

SFMom I have wondered if abx were low, thanks--and LLM, I will call if nearby

TPotter thanks for saying T went OK for you all.

[Pandasphilly]

Hi TMom,

I find it interesting because my son's history follows that of your daughters almost exactly. Except his began 2 years younger (at age 9) after strep. We also came back positive for bands 23 + 41 on Western Blot recently in February 2013. Can you please let me know the results you find through igenex? Also how much IVIG initially brought you to a symptom free year?

 

We are now treating for suspected Lyme and bartonella or other co-infections and my fear is the same in regards to symptom increase in die off. (increased aggitiation (rage) and Defiance). I definitely need to get on the detox train. We see an ART doctor next week so I'll share any additional suggestions to those of these brilliant moms ahead of us!!!

[philamom]

My dd was on tindamax Sat/Sun (only) for 9 months - definitely saw an increase of symptoms on Sunday and Monday (or Monday & Tuesday - its been a while), but also felt she made great improvement on it. It was a love/hate relationship. We did have extreme difficulty during times of IVIG while on it though. Not the same for everyone I'm sure.