philamom

My daughter takes Azithromycin tablets 250 mg (manufacturer is SANDOZ). They are white and come in a bottle of 30...from Rite Aid.

Jill- that would be fantastic...keep us posted. Let me know if I can help in any way! kmom- the church the Montco Lyme Assoc. uses is located in Lansdale.

What about silver fillings? I recall Lyme Mom saying the spirochetes like to hide in the fillings? My daughter has 4 baby teeth with silver fillings.

My dd(9) has Severe school anxiety with refusal to attend. Last year she was out for 3 1/2 months (medical leave) and missed many other days due to her anxiety. Is there any good articles to give to teachers,exc? She begins 3rd grade Tuesday (hopefully).

This was diagnosed through a urine test called Organic Acids Test (OAT). Also, our DAN can usually tell clostridia by behavioral symptoms and by stool color, texture, smell (for my 2 yo it is light brown/yellow, very smelly and diarrhea-like. my 5yo's stool does not always change, I guess it's different for each kid). OAT test - Great Plains Labs The other way you know it's clostridia is if there is a major die-off or herx reaction when you start the antibiotic. Augmentin can also kill some forms of clostridia (not as effectively as flagyl or vanco). I have seen my son go into a kind of rage within a couple of hours when starting augmentin before, a type of behavior that was not indicative of strep. Then over a period of days he gets better. Our DAN also said that when there is clostridia, you will see the behavioral symptoms come back much faster after discontinuing abx than you will with strep or other bacteria (expecially if the abx was not effective at killing the clostridia). Clostridia is very, very, very hard to get rid of and may need multiple rounds of vanco or flagyl, then followed up with special probiotics that target clostridia (culturelle and Saccharomyces Boulardii) to keep it away. After learning about this and finding that vanco gets my kids better much of the time, it makes me wonder how many of us are really battling clostidia instead of strep half the time (could be the reason high dose augmentin works so well for some). By the way, zithromax would make clostidia worse...if someone starts failing miserably on zithro, development of clostridia should be investigated (or strep that is azith resistant, of course). Why do you think Zithromax would make clostidia worse? My daughter's Immunologist feels zith is the safest abx for her to be on because of her history of 3 c-diff infections. Lyme should also be considered if you have an increase of symptoms when starting zith due to herxing (zith is one of the abxs use for treatment). Thanks- Melinda

I know the Montgomery County Lyme Chapter holds their monthly meetings at a church near Montgomery Mall (Rt 309). I can look into it if you would like. I look forward to meeting to y'all wherever we end up at!

If cramping continues, you might want to rule out a c-diff infection by a stool sample. Even on probiotics, you can still get c-diff. My daughter has had it 3 times. While she's on antibiotics we run a stool test every eight weeks.

My daughter has a severe fear of Tsunami's, anything related with allergies, spiders, and sneezes in movies/tv shows. In her first & second episode she had a severe fear of bees...in third episode it was stink bugs. Before major onset...no fears at all! Ugggh!

I've been away since the start of this forum and was curious who has a diagnosis (or possible diagnosis) of Lyme by testing or an LLMD. Could you post who in your family has lyme and how it was determined (Igenex,Lab Corp,LLMD...exc). My dd9 has a positive Igenex IgM test (positive 31, 41, 58 / double positive 83-93 / indeterminate 34, 39) and positive Igenex IFA (1:80 titer).

NewBeginnings- Can you give more details about your son's Lyme diagnosis? If I remember correctly, he was diagnosed with Lyme first and currently PANDAS? How long has he had lyme? How old is he? I am interested in the milk thistle for liver support...my dd9 has elevated ALT/AST enzymes. She also recently had a positive Igenex Western Blot IgM. Thanks.

KMom, What about Kefir? I see that it doesn't contain s. thermophilus but has other probiotics in it (mine has s. diacetylactis and s. florentinus). Do you know if it's just s. thermophilus or anything with an S.? Do you do cheese? Caring Mom I'm pretty sure all yogurt & kefir have S. thermophilus. It's what's added to milk to make the product. It's not always listed as an ingredient, but it's there. If you have concern, there is usually a toll free # or website you can contact to inquire.

My daughter had 4 cat scans of Sinusis: first one: probable chronic sinusitis. second one: PAN (all openings blocked) sinusitis. did month of Augmentin and a week of steroids. third one: follow up to PAN= minimal improvement of sinusitis. fourth one: after two IVIG's= no evidence of sinusitis. This was over a period of 5 years. My daughter hardly had any drainage coming from her nose (it was way up there), so doctors would say she was fine. When she blew her nose nothing would come out, but when she sneezed or really cried, green stuff (sorry) would. Dr. B said because this was not addressed correctly, it went chronic.

Interesting abut the peroxide. My mother is always persuading me to use peroxide as a remedy for different things. I also fight sinusitis alot...I'll have to give it a try!

Yes, but I am not sure who, and I am not sure when!! Dr. B. just had my dd get additional testing for co-infections to Lyme yesterday. It is going to take at least 3 days to get those results. I have been told that Dr. B. is in contact with a Lyme literate doctor, but I think I would like to bring her to a doctor and not filter the information to me through Dr. B. I trust him, but Lyme is not his specialty. Also, Dr. B. is 3 1/2 hours away and it is a whole day ordeal to get there and back. My approach right now is going to be to send the following paper to her pediatrician who is very open-minded, and see if she would consider treating Amber for Lyme based on the treatments outlined in this paper: http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf If she would rather not, I will find someone who will. It is so frustrating that time is of the essence in treating things like PANDAS and Lyme, and it takes soooo much time to get anything done. We are going to be starting IVIG in about 2 weeks. At least that will reset her immune system and help her fight things, whatever they may be. Did you run the coinfections thru Igenex? We also have a diagnosis of lyme. Can you pm the llmd who Dr. B is in contact with? Thanks!

Will you be seeing a doctor for the lyme diagnosis?

Can you try Advil to see if it helps? I'm sorry this is happening right before college...she has enough to be anxious about. Hopefully, it's just a day or two of "turning back the pages".

I'm doing a huge happy dance here for you!

Great Job Gary...keep up the good work! Your strength is helping many!!

I look forward to the lyme forum. Thanks Sheila!

Thank you for the update. Can you mention what Lyme testing was done? Thru Igenex? Also, what abx was your son put on? Thanks again!

Antibiotics should be given 2-3 hours away from antacids, bentonite clay and charcoal pills.

Ellen- Oh...he is such a sweet & courageous boy! I hope your family's long journey brings him back to 100%! I look forward to hearing the specifics...Thank you. Melinda

JT's Mom & Dut- Thank you for helping me sort this out. I agree with the importance of probiotics while on abx...my daughter has a history of c-diff infections. But, I'm still hesitant of giving the Florastor at the same time as the abx. I think I'll try Culturelle/antifungal am, antibiotic at lunch, bentonite clay at dinner, and Custom Probiotics/antifungal pm.

Hi Ellen- My daughter had IVIG with your son mid April. I'm so glad to hear he is 85-90% back to normal...Fantastic!! I'm wondering if you're considering the Igenex lyme testing? Melinda