philamom

Great - thanks. So many infections these days.

Off topic- but in constant worry mode- My daughter is just starting to return to school for some hours. On Friday the school had an event with a lot of parents there. Many of the parents wanted to know what was up with my daughter and how she is doing. Some already know about the issues with strep from previous years, but I haven't told too many about the lyme. My daughter doesn't want her friends to know because she feels like many already avoid her. I did mention it to one mom who has invited my daughter over in the past, though I didn't go into detail about chronic lyme. She told me last week she found 4 ticks on her couch. Her dog brings them in. She said she doesn't take her dog in the woods, so it's just from their back yard and walks. So it got me thinking about all our friends with dogs, and whether I should be putting repellent on my daughter when she is visiting, even when I know they won't be going outside. We are animal lovers, esp. my daughter, so I know she is rolling around and playing with the pets. But people will think I'm crazy (inc my hubby) if I put repellent on her for inside playdates. What do you think - overboard?

JF- remind me what Chlamydia pneumonia is again. My daughter's was 1:128 IgG - very high

I'm glad to hear the asprin link to Reyes has been de-bunked. There is talk of putting my daughter on daily low dose aspirin, if new labs comes back positive.

Tried to send you a pm (again) Can you clear some of your messages. thx

20's are low, epecially in a 5yr old. My (not dd) CD57+ Lymphs was 59 (range 60-360) from LabCorp. Positive Igenex.

Also sending prayers.

I wouldn't (JMHO). Same scenario for us last week - I kept my dd home. They're calling for a real bad season of lyme disease on the East Coast. Get your daughter well first - most imp right now. If you do send her - don't forget the protection.

I think you should ask Scott. Vanco is the strongest antibiotic treatment (that I'm aware of) to conquer c-diff, and usually used when Flagyl has failed. But, if you have high c-diff you need to treat it. Probiotics only help to replace good flora (also very imp.) Some doctors will treat with flagyl/vanco for high levels of clostridia in a urine or stool test from Great Plains, exc. Some doctors will only treat with flagyl/vanco if you have a c-diff infection from Quest, exc, and/or GI symptoms to correlate. I can't understand why Scott would object to adding in some Florastor or Culturelle - it doesn't interfere with the test, I don't think. Is it the OAT test? I would call and ask him.

That makes more sense. I don't think Dr. J will treat clostridia unless it's shown in the stool. I feel for you and understand completely about the herxing. My daughter used to herx to every single vit/supp/benadryl- u name it (though not as bad as your dd), but not as much anymore. But, I still need to up her detox -so I get it. When is Dr. S running the test for clostridia? If it's just a few days, then I would follow his instructions. He probably wants to be certain about the clostridia, being that Vanomycin is a last resort of treatment (no abx stronger to fight it). You have two great doctors - unfortunately, with different protocols. Thinking of you.

Besides Rechts Regulat (don't think my dd could drink it), is there any supplement you could recommend for thinning the blood? Thanks in advance.

We use Florastor and don't have any issues with it, but maybe you could have her drink 4-6 oz. of fluid with it. It may cause some gas the first couple of days. If you purchase the Florastor for kids - they are packets, and you could start with 1/2 packet. Unfortunately, I think it's a little more expensive than the capsules- because the box of packets is for less amount of days. Also, I just picked up a bottle of "Georges" Aloe Vera juice. I heard it helps with constipation. I purchased it for myself because I have severe constipation issues (IBS). It is clear/tasteless - I'll let you know if it helps. It was nine dollars at Whole Fields.

Hi Lily- I'm sorry for everything you're dealing with right now. It does get confusing with all the different protocols. Is Dr. J the one that is testing for clostridia and recommending the vancomycin? Or, are you working with two diffent doctors? Yes, I believe probiotics are extremely important while on antibiotics (my dd had c-diff in the past), but maybe the doctor who requested you to wait until after the Vancomycin has a good reason. If I recall, your daughter REALLY herxs to supplements (including probiotics) and abx. Maybe he/her is being cautious regarding the herx, and feels it is very important that she receives Vancomycin with causing a huge herxmeirer (sp?) reaction - and then wants to slowly add probiotics. just a thought. edit- when are you testing for the clostridia?

I would listen to your doctor. Ask why he wants you to wait until after the Vancomycin, or does he just want you to dose the abx far away from the probiotics. It sounds like he doesn't want anything to interfere with the Vancomycin. By the way, some doctors don't put faith in the clostridia tests. Not saying I agree, but some will only treat if you have a c-diff infection as opposed to high clostridia (ex- Great Plains lab).

1.5 over two days of Gammagard - Dr B - 1 liter of dextose sugar water is infused each day at the same time. Benadryl/Motrin every 6 hours three times a day (9,3,9). We continue few days afterwards. Additional dosing may be needed through the night. We give 1 solutab of Orapred 15mg on infusion days only, with food. Zofran on hand. Plenty of fluids.

bumping

As suspected, Rheumy wasn't too interested in lyme/PANDAS diagnosis. Whenever I brought up strep or lyme (even showed dd's recent culture photo of the spirochetes) they changed the subject. It was a two hour wait and we had to go through dd's history twice before finally speaking with the doctor. I asked if my husband and I could first speak with the doctor alone (brought grandma to sit with dd), but was told that's not how they like do things - hmmph. Anyway, they don't feel she has lupus. They are running a few more labs to check for Anti-phosholipid syndrome. Here are her labs: Sept- HIGH= LFT's 300's, dnase 663; LOW= cholesterol Oct- HIGH= LFT's, dnase, protein & globulin Nov- HIGH= LFT's, dnase, sed rate 96 & 92, platelet count, protein/globulin, CH50; LOW= glucose, lymphocytes CD 19, hematrocrit Nov- ANA+ (nucleolar, homogeneous), DNA antibody+ (crithidia), high PTT LA Screen Dec- HIGH= LFT's, sed rate 94, C reactive protein 1.08, fructosamine, globulin, triglycerides; LOW= RBC, hemoglobulin, hematrocrit, cholesterol, hdl, alb/glob ratio, total iron & binding capacity Dec- ANA+ (nucleolar, homogeneous), negative DNA antibody, high PTT LA screen, high DRVVT screen, positive hexagonal phase, negative DRVVT confirm Mar- HIGH= sed rate 80, RDW, creatinine, total protein, globulin, triglycerides; LOW= cholesterol Mar- ANA+ (nucleoloar, speckled), negative DNA antibody, high PTT LA screen, negative DRVVT screen, weakly positive hexagonal phase

mimip- we were treating my daughter for PANDAS before the lyme. She had a major onset of PANDAS symptoms in 2007 (mixed bag of everything) nine months after a tick bite, that went into remission after a few rounds of abx for a sinus infection. Afterwards, she had another two exacberations that also remitted with abx. In March 2009, she got sick again, and it's been chronic ever since. We found out about the lyme in July 2010. For years previous to the major onset, my daughter had frequent sinus infections that presented with minor (but enough that it was recognized) behavioral symptoms that subsided with treatment. So not really sure what was first for her, Lyme or PANDAS, but now just call it PANS. She use to present mainly with behavioral symptoms, but now seems to be more physical symptoms. I hope your daughter gets well soon! My dd is 10. I'm running out, but will post later about her Rheumy appt. yesterday.

My daughter would always flare with dentist cleanings. I agree with increasing or adding a second anitibiotic for few days before and/or after. Request a light cleaning (they don't really need to scape and floss that hard). It would be best to avoid cavities and further dental work. I've noticed the flares aren't as bad for my daughter lately - maybe the IVIG, or maybe her immune system is not over-reacting as much. Supplements/drugs that used to give us the opposite effect (ex-benadryl) are no longer. also- use mouthwash with xylitol before & after. I also remember someone posting another mouthwash (maybe RX) that helps with the bacteria. Maybe someone will post the name of it.

They don't seem to like to use Doxy in kids but it worked so much faster/better than Amox, could also be that Amox did a lot of the work and Doxy given after is getting all the glory, hard to know, we just saw such a major improvement. DD's emotional state was going off the charts on Amox but this may have been a Lyme herx, not sure. Azith does not work in Lyme at all but I can't recall why. DD has very high Mycoplasma (labs were a 5, normal cut off range was under 2) We are seeing Dr. B's PA in 10 days, seeing a PANDAS/Lyme (I think/hope) literate neurologist and have an appointment with a well known agressive Lyme "guru" next week. Today I went through the Neurologist's patient questionaire symptom checklist and was completely alarmed to see that I had checked many, many boxes in the neurological symptoms section. I really appreciate this forum, this is the best I have found for answers. Thank you, I hope your DD is healthy and happy. My daughter was given zith as part of her lyme cocktail.

Make sure the strep titers are listed as Anti-Streptolysin O (ASO) and D-NASE B Antibody. There is another test that sounds similar to the d-nase that is sometimes ordered by mistake. Plus, whenever my doctor fails to put the B on the end, our lab (quest) needs to call to verify, adding on more time before a blood draw - not good for a child. You may also want to order the streptozyme screen.

Mimi- Thank you for your response. Yes, my daughter is positive for lyme, bartonella, RMSF, mycoplasma (slightly elevated IgG), and at the time of the highest sed rate number, strep (high d-nase). She see's Dr. J in CT. He recommended an appointment with a Rheumatologist. I am a little nervous about the appt - will speak with DR. J before making any changes or starting meds. I don't know of any lyme literate rheumy - wish I did. My daughter started having problems (with this flare) Sept 1st. I think it was due to a strep infection. Her LFT's wen't into the triple digits and her strep titer in the 600's. She was taken off her antibiotics for lyme & Co. because of the elevated LFT's. She then became ill with erythema nodosom, joint pain, headaches, nausea, gerd, GI complaints, fatigue, extremely pale, cold, vertigo. Other labs pointed towards lupus (or drug induced lupus), so she remained off antibiotics. But symptoms got worse. In December, we took advantage of her being off abx and ran the new borrelia culture, which was positive. She's also positive with lyme via Igenex and Bart via Specialty lab. When we attempted to put her back on abx (zith), she couldn't tolerate it - we tried twice. We eventually got her back on Amox the end of February, and slowly been increasing it. Thats why I think her Sed Rate is starting to go down some - into the 80's. Her symptoms are better some as well. Did you know about the lyme and co before seeing the Rheumy? Did they try to change/alter treatment? Did the treatment make your husband's lyme symptoms worse? Thanks again, and I hope he's doing better!

Yeah, I think that was the guy he recommended. It's 7.5 hours from home. Sigh...I just wish it were easier to get help. I guess I'll call Monday afternoon and see what I can learn from them and see if the doctor might be willing to talk with our family doctor. I'm so frustrated. Maybe its just those few days post ivig where things are really hard and she'll feel better in a few days, but that remains to be seen. She had such a bad night last night. I hate to see her struggling so much. Wishing she wasn't alive anymore. It is years of built up frustration of dealiang with ocd every day. Things are so much better than they ever were but its been such a slow improvement. And I'm dealing with my own health issues and trying to make some money to pay off all these medical bills. I just wish I KNEW WHEN she would feel better. Going to do some extra detox and make an apt. with our family doc and see what she says. The days, weeks right after IVIG can be the worst - hang in there. That's when we have our (wish I wasn't alive) moments.

She has an appointment at St. Christophers in Philly on Wednesday. I know the sed rate is high, but couldn't find much information on it being that elevated in children. I will pm you for the name of the NYC Rheumy, just in case. Thanks. So glad to hear you are currently in remission!!

I know he recommends Dr. Bransfield, but he is in northern NJ (I think) so I don't think that's whom you're referring too. Sorry. How are you holding up? Hoping you are doing well!