colleenrn

Common symptoms include the following: •Chest pain •Chills •Cough, usually dry and not bloody •Excessive sweating •Fever (may be high) •Headache •Sore throat Less common symptoms include: •Ear pain •Eye pain or soreness •Muscle aches and joint stiffness •Neck lump •Rapid breathing •Skin lesions or rash

I was wondering if anyone is using or knows of a LLMD in Virginia or neighboring states. TIA! Colleen

Wendy, Could you tell me how to do provocation on myself? Especially for bartonella, as I have had the scratch-like "rash" on my body several times over the past few years. I never put 2 and 2 together until reading about bartonella. TIA! Colleen

I am looking over my niece's labs right now and was wondering if anyone could comment. These are the Western Blot results. IgM band 41 and band 23 positive. IgG band 41 and band 23 negative. I am interpreting this to mean an active infection b/c the IgM is posotive. Is this correct? Even the Lab Corp interpreatation on the lab report reads, "Western Blot IgM interpretation:positive abnormal TIA. Colleen

I read the Lyme threads everyday as I am suspicious that is what could be making my children continue with their PANDAS symptoms even though on multiple antibiotics, however this post is about my 4 year old niece. She recently tested positive for bands 41 and 23 on the Western Blot. My son tested positive last year on only band 41 and my other 3 kids negative on all bands. I know this does not mean much, but I have not yet done further testing. My niece had the recent bloodwork done b/c we think she and her 8 year old brother may have PANDAS (have strep issues). I see that band 23 is specific for BB. I am looking for input on whether they should do Igenex now with both 41 and 23 present. TIA! Colleen

Typing on my phone. Meant to say treating other two kids. Meant to type DS14. Colleen

Yesterday two of my kids tested positive on rapids for strep. My 4 year old has been on Augmentin 250mg twice a day for 10 months (weighs 42#). My 10 year old has been on daily Zithromax 250-500 for over 2 years ( 93#) AND two weeks ago took Augmentin XR 2,000mg for ten days. I am beside myself. If this does not prevent strep, what will?? We are treating my other 2 loss also bc their symptoms have been through the roof. My SD 14 is now on keflex, Zithromax, and Aug XR. We added zithromax to my DS4 and Omnicef to the other two kids. I am taking regular Aug for 10 days.

(Just posted this on PANDAS forum by mistake) I thought I had recently read a post on the Lyme forum about a scratch that looked like a dotted line. Over the years I have had that come and go, but never knew what it was and chalked it up to one of my children scratching me while nursing b/c the scratches always seem to be on my trunk. Since reading something about a dotted line scratch and TBI, I have been thinking about it, but just today I have two. Both on my trunk and they were not there yesterday. To my knowledge I have not been scratched. One 3 inch scratch that looks like a dotted line scratch (can't think of any other way to describe it) and one that is about one inch long. The long one actually itches a little bit. TIA for any info. Colleen

I meant to post this on Lyme forum. Sorry. Colleen

I thought I had recently read a post on the Lyme forum about a scratch that looked like a dotted line. Over the years I have had that come and go, but never knew what it was and chalked it up to one of my children scratching me while nursing b/c the scratches always seem to be on my trunk. Since reading something about a dotted line scratch and TBI, I have been thinking about it, but just today I have two. Both on my trunk and they were not there yesterday. To my knowledge I have not been scratched. One 3 inch scratch that looks like a dotted line scratch (can't think of any other way to describe it) and one that is about one inch long. The long one actually itches a little bit. TIA for any info. Colleen

My kids are 1/4 Italian, 1/4 German, 1/4 French, 1/8 Irish, and 1/8 English. I was a PANDAS child and I am 1/4 English, 1/4 Irish, 1/2 French. Colleen

If the basic western blot Igenex test comes back negative, does that say for sure that the child does not have Lyme? Can I order the test myself or does a dr have to order it? Colleen

Thank you for all your replies. Last night was a little better. I had stopped giving her the multi-vitamin and B complex for about a week (b/c she takes so many meds/supplements) it was so hard to get everything in her, so I added that back in yesterday. We have not ruled out any TBI, only did the western blot through quest labs (worst one apparently) when we did a bunch of lab work thro Dr T last summer. I read on the Lyme board daily and we do live on the east coast and we have had multiple embedded ticks and our neighbor has Lytmes and his dog just died from what they think are complications of Lyme... So looks like maybe I should be posting on the Lyme board as well as the PANDAS. I know TBI are prevalent. I am just so incredibly worn down and worn out with 4 kids and 10 years of this... I honestly do not know where or how to begin the Igenex, nor how to convince my husband b/c of the $$$. We have had thousands of dollars on medical expenses just in the past year. I also know I should pursue IVIG for her. Not sure where to start there either. Colleen

I can barely type this b/c I am so upset. My 14 yo old daughter has been on zithromax for over two years. During a big flareup last month, we added Augmentin XR 1000mg/twice a day and did a month long steroid burst. That got her from an 8 down to a 4 (scale of 1-10 with 10 the worst). Now she is a TEN. I don't know where to go from here. She takes zithromax 250mg/day, Augmentin xr 2000 mg/day, ibuprofen 2-3 times/day, zyflamend and tumeric, Omega 3's, probiotics. Every night for the past 2 1/2 years I have had to stay with her until she falls asleep. Last night was the worst ever. We layed down at 9:45 and she was not asleep until 12:45 and that was with 25mg of benadryl and 5 mg of melatonin. Within those 3 hours she had multiple panic attacks. He heart would race and she would feel really scared and shaky, even though I was next to her and holding her hand. During the day she is a very independent young lady, does great in school, just made lacrosse team, lots of friends, for which I am so thankful. It broke my heart to see her that way and knowing she is on 2 antibiotics and can't do steroids again for a while. I am looking for any advice, insight, anything. TIA. Colleen

Eamom- Did you keep her on the zithromax while adding the augmentin? Do you think it would be better to get regular Augmentin for him b/c it has more Clavuluate potassium? He is on day three of the 500 XR twice a day and I have noticed he is a tiny bit less irritable. It has not bothered his stomache, so I may give the whole 1000mg tonight and for the next week. He has only been on penicillin once b/c I would never let them prescribe pcn or amoxicillin due to it not helping my oldest at all. She would test positive while on weeks of amoxicillin. That is why I am so anti- pcn for PANDAS kids, but I know it works for some. Colleen

Latimer can't see them until mid April. His pediatrician will probably not give them antibiotics. Not sure what to do except to find someone who gets PANDAS and will give antibiotics until they see Dr. L. I will tell them about cacellation list. Thanks! Colleen

My brother thinks his two children may have PANDAS. I have thought this for quite some time now. He has an appointment with Dr. Latimer in mid-April. His pediatrician knows nothing about PANDAS. After his son was seen by a urologist after having post-strep glomerulonephritis, the urologist knew about PANDAS and said this doctor treats PANDAS. Does anyone know if he truly treats PANDAS or how he treats it? I don't want my brother wasting time and I am so worried his son is not on any antibiotics. He was on only 8 days of Biaxin. The doctor is Dr. Lawrence Jung in Washington, DC and he is a rheumotologist. His specialties: Systemic lupus erythematosus, Dermatomyositis (juvenile), Juvenile idiopathic arthritis. Practice Locations Children's National Medical Center - Sheikh Zayed Campus for Advanced Children's Medicine. TIA. Colleen

I am so sorry. I keep posting here instead of PANDAS by mistake. Sorry!

My brother thinks his two children may have PANDAS. I have thought this for quite some time now. He has an appointment with Dr. Latimer in mid-April. His pediatrician knows nothing about PANDAS. After his son was seen by a urologist after having post-strep glomerulonephritis, the urologist knew about PANDAS and said this doctor treats PANDAS. Does anyone know if he truly treats PANDAS or how he treats it? I don't want my brother wasting time and I am so worried his son is not on any antibiotics. He was on only 8 days of Biaxin. The doctor is Dr. Lawrence Jung in Washington, DC and he is a rheumotologist. His specialties: Systemic lupus erythematosus, Dermatomyositis (juvenile), Juvenile idiopathic arthritis. Practice Locations Children's National Medical Center - Sheikh Zayed Campus for Advanced Children's Medicine. TIA. Colleen

You are very, very lucky to get an extended prescription for Zithromax. I would most definitely not stop giving it to her. These kids really need a much longer course of antibiotics and zithromax is a great one to use with PANDAS. Have you tested everyone in the house for strep? Make sure they grow it out for a full 72 hours. What dose is your dd taking and how much does she weigh? Colleen

Has your daughter had a throat culture, grown out for 72 hours? If not, I would get one asap. Low titers do not ever rule out PANDAS. A lot of children with PANDAS just do not get elevated titers. Many drs think if a titer is normal, that means the child cannot have strep, and this is very incorrect. Has your daughter been on any antibiotics since her behavior changed in January? Colleen

Given the strep at school and the sore throat, I would definitely get a throat culture, b/c you can get strep while on antibiotics, especially with certain types of antibitotics and if it is at a lower dose. Do you know about making sure they grow the culture out for a full 72 hours? What antibiotic and what dose is he taking? Colleen

I am wondering if I should try regular augmentin first as he has never been on aug. He has been on zithromax for over two years and doing pretty well until recently. I tried increasing the zith, adding ibuprofen and no results. My 14 yo is having pretty good results with the augmentin xr added with the zithromax. My 8 year old is also in a flareup (he is on zithromax daily), so I am thinking he needs Augmentin added in. He only weighs 50 lb. Nancy- Yes ,he would take the adult dose b/c anyone weighing over 40 kg takes an adult dose of augmentin. Colleen

We did a bunch of lab work through Dr. T this summer on my four children and myself, including ASO and streptozyme. My ASO was normal, BUT my streptozyme was 400 when it should have been lower than 100. One of my children had a streptozyme of 200 (normal<100) yet his ASO was normal.

My 10 year old weighs almost 90 lb., so I am thinking he could take 1/2 of the 1000mg. It has really helped his older sister (they are both on Zithromax) and I am tempted to add it in, if only for 10 days. Colleen