Update on DD14

[NancyD]

I have been so overwhelmed with my DD that I haven't had time to get on this forum lately. Wendy, I saw your post on raging and I wanted to respond, but then I couldn't find a moment to get back. I have been thinking about you. The raging is the worst to deal with and so hard to control. I hope things have eased up for you! I told my DD about what everyone is saying about peanuts. We're going to try that. My daughter has had a few rages in the past 3 weeks (one was very violent) but I think that she had blue or red dye on two of those occasions. Impossible to control what she is eating at school, especially around Halloween!

 

When we started the Zithro and Diflucan my DD was feeling a bit more sensitive and moody and definitely more fatigued but I did not notice any of the serious herxing we were hearing about. 'Course the brain fog and everything else seems to be the same, no improvement. I would like to find out more about Questran that is helping Susan with brain fog.

 

Once we added Tindamax on day 10 (DD is taking it twice daily, so we may need to cut back to 2x/week) we saw a significant escalation of symptoms, I assume herxing. She was much more fatigued, the anxiety and OCD was worse, diarrhea almost daily, a couple of rages, much greater sensitivity and moodiness, etc. And to make matters worse she is sick again with an URI -- the 3rd time in 2 months. She has a dry cough, dizziness, yellow/green mucous in her nose, cracks at the side of her mouth. I'm thinking we should have her strep and Myco P levels checked again, although she's also on Augmentin XR 1000 mg bid. We see our doctor Friday so maybe he will adjust the Tindamax and add in something else. She may be low on B vitamins -- I always find that can cause cracks on the side of the mouth. I also think we need to increase the Theralac as she is only taking one per day. I wanted to start low as she has always had difficulty taking probiotics (except for bifidus factor, which is more of a prebiotic I think).

 

We're hanging in there, although this is so consuming. I have hardly gotten any work done, which is not good as I am the sole caretaker and my income is needed to meet our mortgage. Her dad is out of the picture completely -- not even an email to inquire how DD is. So far DD has missed a few days of school and grades have slipped a bit. She wants to stay home again tomorrow and I have laser eye surgery scheduled so I would have to leave her home alone all day. Not really what I'd like to do although she can be very responsible.

 

We have not had a vacation of any kind in many years because of the PANDAS and my father just sent me 2 tickets to come visit him in the DR where he lives half the year and has a house right on the beach. It's in a remote area of the DR so there is nothing but beach and reading to do all day. Not even TV. I'm hoping our doctor says it's alright for us to go because we really need the do nothing for two weeks over the holidays. I know I really need it badly after the year we have gone through!

Nancy

[KeithandElizabeth]

Oh Nancy, I feel for you right now. My daughter had horrible meltdowns during first stages of lyme treatment.

 

So, she is on Augmentin, zithromycin, Diflucan and Tinadmax? The one concern I have is that she has daily diarrhea daily. I would bring this up to your LLMD immediately to make sure she there is not any type of bad gut bacteria going on right now. I am also wondering if this can be a yeast issue and you are seeing die off from the diflucan? We have always used the high dose probiotic regime to help with the gut during our antibiotic treatment. My kids were always on 500 billion units (10 fifty billion unit capsule) and Wendy gave her son 1.5 trillion units.

 

The other thing I would recommend is the bentonite clay to help with detox and gut issues. We also did long epsom salt baths (with half the carton in each bath) during our worst moment. Many LLMD's recommend several other detox formulas and maybe you can ask yours to recommend a few to you tomorrow.

 

It would be very nice if you could join your dad on that vacation. You really deserve it!

 

Elizabeth

[sf_mom]

Nancy,

 

I've definitely been thinking of you too and wondering how your DD was doing and if you've gotten any test results. The rages in my younger son have seemed to calm but do expect more. We had three huge ones when starting the third antibiotic for the babesia all the other 'about to be rages' were curbed with peanuts/motrin/kids calm.

 

The first time we saw Dr. H, he felt our oldest was probably already in cyst form due to all of his prior PANDAS treatments. Also if you read my comments JJl post... I also suffered from urinary issues and often thought I had a bladder infection. As you know, Lyme loves the bladder and the irritating feeling comes and goes but definitely increased when starting antibiotics. This particular symptoms has since resolved.

 

I am also on 1500 m.g. of Tindamax, 300 m.g. Doryx, 500 m.g. Azithromycin per day and I can personally speak to how edgy its made me feel, symptom increase while also being more energized and thinking clearer.

 

Anyway, I've got to run this morning before the meltdown.

 

-Wendy

Edited November 14, 2010 by SF Mom

[lyme_mom]

Wendy that's exactly how flagyl made me feel! Edgy. That's the word I used. They are sister medications flagyl and tindAmax.

[trggirl]

I just wanted to comment on one aspect of your update. My daughter recently had her vitamins and minerals checked. She came back low in Riboflavin (B2). One of the symptoms of low B2 is cracked lips as you mentioned. My daughter did not have cracked lips but she does have periodic tics. When we started the riboflavin a couple of weeks ago, her tics stopped within a few days. We had also started a gluten and corn diet at the same time but my gut feeling is it was the riboflavin. Anyway, it could have been a coincidence but I did want to throw that out there after you mentioned the cracked lips.

[NancyD]

Thank you, Elizabeth and Wendy!

 

Elizabeth, yes, DD is on Augmentin XR, Azithromycin, Diflucan, and Tinadmax. For supplements she is taking:

Vitamin C 5,000

Vitamin D3 1,000 IU

[i think this needs to be increased]

Vitamin E 400 IU

OmegaPure 600

NAC 3000 mg

Theralac 1 capsule

[i believe there is 30 billion CFU of five probiotic strains and I know this needs to be increased but I wanted to do it slowly given my DD's problems with probiotics in the past]

Transfer Factor 1800 mg

Milk Thistle Max 750 mg

Kirkman EnZym-Complete with DPP-IV™ 1 capsule before meals

Querciplex (1998 mg quercitin, 600 mg bromelain, 120 mg magnesium total per day)

L-Theanine 100 mg

Melatonin 3.9 mg before bedtime

 

My DD had been taking Diflucan daily since starting Augmentin XR in April and I know she has no adverse effects from that. And I know her gut was in perfect shape prior to starting Azith and Tindamax. We had her scoped in June and all her tests came out clean (so to speak). But it is certainly possible we are seeing dye off. We see our Dr Friday. I do think we are going to have to add back in other supplements (e.g., magnesium, Co Q10, Methylfolate, Ultra Preventative III, etc.). We stopped those late last year because I was concerned they were makng her moods and rages worse, but it was either a PANDAS exacerbation or effects of IVIg on LD.

 

Our doctor is big into detox so I'm sure he will put DD on some sort of regime. I will ask about bentonite clay. She does take long epson salt baths - a few times a week.

 

Wendy, I'm so glad your little one is doing much better and that the rages have calmed down. I'm psyched to try the peanuts or peanut butter. So far no urinary problems but I will watch out for that. She did have bouts of energy -- she felt like she was very hyper. Maybe that's from the Tindamax.

 

At this point we are planning to go on our trip to the DR. My father and his wife are good about using bottled water for cooking and cleaning and making ice cubes and they are careful about how they prepare food. The one thing that concerns me is mosquito-born disease (specifically Dengue Fever). My daughter cannot use DEET -- I just hope the other natural products will keep the mosquitoes away. He is talking about having the exterior of the house sprayed. I guess all I can do is be careful. We can't live in a bubble.

 

Trg girl, I think you may be right about the B2. I forgot which B it was. I will go out this afternoon and get some B Complex. I used to get cracked corners in my mouth frequently in my 20s. Once I started taking B complex for it that helped fairly quickly. I also read that it could be a yeast problem. Good idea about checking vitamin and mineral levels. Think I'll ask Dr to do that Friday.

Nancy

[trggirl]

Oops, I forgot to mention that I did find a study that says that B2 inhibits glutamate release in rats by suppressing voltage-dependent Ca channel activity. I found that to be interesting.

Edited November 14, 2010 by Trg girl

[mama2alex]

Vitamin D3 1,000 IU [i think this needs to be increased]

 

Nancy,

 

I just wanted to give you my 2 cents on the Vit D, as this has been an issue for us. My son was deficient and we started him on 2,000 iu per day. When we first saw the LLMD 2 1/2 months ago (same one SF Mom sees) we retested and his level was 37 (up, but barely in normal range). The LLMD said Vit D is CRUCIAL to Lyme/co-infection treatment and the ideal range is 60 to 70. He recommended we switch to D Emulsion drops, which he said we could order from a doctor somewhere else in CA (I can PM you the contact info if you want it). He felt these would be better absorbed, and you only have to give 3 drops for 3,000 IU's.

 

In any event, I would recommend you test her vit D level. It's a blood test and has been covered by our insurance.

 

Jennifer

[sf_mom]

Nancy...

 

OOOOPs I read your post wrong... I thought you wrote UTI and you wrote URI. Never mind my babble about UTIs and urinary issues!!!!!!!! My mind is getting ahead of itself.... must be the TINDAMAX

Edited November 14, 2010 by SF Mom

[NancyD]

Jennifer,

 

Oh yes, I definitely agree with you about D. I have been doing a lot of reading about D lately. My DD's D levels were catastrophically low at "7" in April. Dr. L put her on 50,000 IUs weekly and it went up to 45 within 5 months and then she suggested we go back down to 1,000 IUs daily. I agree that DD needs to be AT LEAST at 60, if not higher. I check her D levels fairly often now. It's high on my list of topics to discuss with our Dr this coming Fri. I will ask him about the D Emulsion drops. Do you know if they are dye free, Jennifer? I assume D3, right? Thanks for mentioning this!

 

Nancy

 

Vitamin D3 1,000 IU [i think this needs to be increased]

 

Nancy,

 

I just wanted to give you my 2 cents on the Vit D, as this has been an issue for us. My son was deficient and we started him on 2,000 iu per day. When we first saw the LLMD 2 1/2 months ago (same one SF Mom sees) we retested and his level was 37 (up, but barely in normal range). The LLMD said Vit D is CRUCIAL to Lyme/co-infection treatment and the ideal range is 60 to 70. He recommended we switch to D Emulsion drops, which he said we could order from a doctor somewhere else in CA (I can PM you the contact info if you want it). He felt these would be better absorbed, and you only have to give 3 drops for 3,000 IU's.

 

In any event, I would recommend you test her vit D level. It's a blood test and has been covered by our insurance.

 

Jennifer

[NancyD]

That is interesting. I'd like to read that study.

 

Oops, I forgot to mention that I did find a study that says that B2 inhibits glutamate release in rats by suppressing voltage-dependent Ca channel activity. I found that to be interesting.

[trggirl]

pubmed link

 

http://www.ncbi.nlm.nih.gov/pubmed/18695519

[kmom]

Nancy D,

 

My PANDAS DD and DS (and possible Lyme...appt this week w/ LLMD:))were born and raised in the Carribean and yes, Dengue Fever was always a fear of mine. Just a tip since your daughter can't use DEET. Origins has "Gardener's Spray"...a natural bug spray I hear that is good. There's also Avon Skin So Soft. One last tip, rubbing fabric softner sheets on body and clothes are helpful to keep those pesky mosquitos away. Make sure there are no puddles of water around/nearby house. The mosquitos get Dengue from drinking stagnant water. I remember when neighbors moved and pool was left not taken care of and I had to call Homeowner's Office b/c non-chlorinated pools are disasterous for Dengue Fever issues.

 

Also, when you said above that you weren't sure if mood swings and rage were from PANDAS exacerbation or effects of IVIg on LD, did you mean that IVIg is bad if LD is a culprit? Since 1st IVIg 3 wks ago, kids were doing well, now horribly and the symptoms are so different than b/f. DD9 complains of foot pain (ranges from tingling to sharp pain), discomfort/pain/electical pulse from forearms to hands, joint pain in thumb and she said yesterday it feels as though her eyes are going to pop out of her head...weird huh? Oh,and we've had rage which we have seen in PANDAS exacerbations...hers are 1-2hr. crying meltdowns but she did describe them as feeling angry.

 

DS6--had joint pain on and off ever since we can remember. Dr's always claimed growing pains. Last week got off bus limping. He says the ankle bone "circle part that sticks out" feels like it fall off. His frustration then rage is getting worse daily. It's so sad to watch. Playing Legos or computer game, gets frustrated, says he hates himself for being so stupid and then runs around yelling and if I try to help him, acts as though I am going to hurt him which I never have or would do. It's mind boggling. Managed to get him in epsom salt bath tonight but was a struggle. After he calmed down, he hugged and kissed me to apologize. Gosh it's wearing.

[NancyD]

Need your help interpreting some recent tests

 

These were high--

Influenza A IgG 3.92 (<0.80 Index)

Influenza B IgG 1.00 (<0.80 Index)

(Note: IgM and IgA for each was normal

 

Just more indication of an auto-immune problem?

 

These were low--

STREP PN Type 3 AB 0.2 (>1.0 og/mL)

STREP PN Type 4 AB 0.2 (>1.0 og/mL)

STREP PN Type 6B AB 0.6 (>1.0 og/mL)

STREP PN Type 7F AB 0.3 (>1.0 og/mL)

STREP PN Type 8 AB 0.3 (>1.0 og/mL)

STREP PN Type 9N AB <0.2 (>1.0 og/mL)

STREP PN Type 9V AB <0.2 (>1.0 og/mL)

STREP PN Type 12F AB <0.2(>1.0 og/mL)

STREP PN Type 14 AB 0.4 (>1.0 og/mL)

STREP PN Type 18C AB <0.2(>1.0 og/mL)

STREP PN Type 19F AB <0.2(>1.0 og/mL)

STREP PN Type 23F AB 0.5 (>1.0 og/mL)

(Note: Type 1 and 5 were normal)

 

As a reminder DD's Myco P IgG levels were 5 times as high as they should be.

 

Thanks!

Nancy

[sf_mom]

Nancy,

 

We've been tracking all our children's strep pneumo titers over time and all are showing deficiencies.... Typically within normal for older DS shortly after IVIG treatments and depleted in 1/2 post 4 weeks and 1/2 again at 8 weeks. Our younger DS however had deficiencies in 13 of 14 serotypes and are now starting to turn around and showing responsiveness in 5 of 14 serotypes. We are making slow and steady progress in one child. I will start sleeping well when they are all within normal ranges. I hope to retest this in a YEAR or when we eventually suspend treatment.

 

Obviously with the Influenza index being high as well as mycoplasma your DD's body is having a difficult time fighting stuff.

 

Any revision on Tindamax for her yet?

 

-Wendy

 

 

 

 

 

Need your help interpreting some recent tests

 

These were high--

Influenza A IgG 3.92 (<0.80 Index)

Influenza B IgG 1.00 (<0.80 Index)

(Note: IgM and IgA for each was normal

 

Just more indication of an auto-immune problem?

 

These were low--

STREP PN Type 3 AB 0.2 (>1.0 og/mL)

STREP PN Type 4 AB 0.2 (>1.0 og/mL)

STREP PN Type 6B AB 0.6 (>1.0 og/mL)

STREP PN Type 7F AB 0.3 (>1.0 og/mL)

STREP PN Type 8 AB 0.3 (>1.0 og/mL)

STREP PN Type 9N AB <0.2 (>1.0 og/mL)

STREP PN Type 9V AB <0.2 (>1.0 og/mL)

STREP PN Type 12F AB <0.2(>1.0 og/mL)

STREP PN Type 14 AB 0.4 (>1.0 og/mL)

STREP PN Type 18C AB <0.2(>1.0 og/mL)

STREP PN Type 19F AB <0.2(>1.0 og/mL)

STREP PN Type 23F AB 0.5 (>1.0 og/mL)

(Note: Type 1 and 5 were normal)

 

As a reminder DD's Myco P IgG levels were 5 times as high as they should be.

 

Thanks!

Nancy