Suzan

Ours are not mandatory, at least they weren't last year. Are people finding they are required? s

I am wondering if it's different for children with congenital lyme than those bitten by a tick but I don't know. My children first presented with sensory processing disorder, OCD, fears, separation anxiety, etc. developing int o PANDAS. dd9 developed her pain when she was round 5 and muscle twitches started age 7 and dd8 has seizures (age 3) and an extra heartbeat (age 4). Susan

Oh dear yes it sounds like lyme. You said that the positive igenex test was YOUR test? So you will be seeing the LLMD for both of you? We do epsom salt baths and motrin in addition to the benadryl. I also have sarsparilla (simlax) not sure if I have those all spelled right. This is an herb that should help with herxing. Plenty of rest and don't over do it. and the weeks will go by before you know it. We had to wait far too long for our appt and it seemed awful but it did go by quicker than I expected. HUGS! Susan

I've never seen his website before, it's really good. Great photo's. That is exactly what I have. I will bring it up with my next LLMD. Susan

I am sorry about the doubting. It is so hard not to do, impossible probably. The yeast question is the hardest for me. I'm just hoping that what we are doing is holding the yeast at bay. I hope you see improvement soon so you will have confidence in what you are doing. I agree with Nancy, we will get there one day. I increase my transfer factor tomorrow and it just barely calmed down. I dread increasing it and having my symptoms increase. I feel the same about dd8's flagyl we have to start in 2 weeks. Now I'm just rambling. Just wanted to give you a little support too. Susan

Our Dan! doc recommended this for dd9 who could not kick her cough and stuffy nose, didn't feel well for over a week.... He said it was a DNA test that is new. I finally found this link that shows more information about all of their panels. The left column shows what is in the panel and the right column shows what the lab results look like. Ours were negative all the way down. The test was a nasal and throat swab and it took 2 days to get the results. http://www.diatherix.com/testing_panels.php Our Dan! said it's new and the insurances companies are spotty on what they will cover. The test is something like $400 or $500. My insurance company paid for 80%. For our negative result, maybe a waste of money? But if the test is accurate, at least I know she is not harboring any of these infections! Susan

TBI? What does that stand for? Tick Borne Infections DUHHHHH. All I could think of was Traumatic Brain Injury!

TBI? What does that stand for?

I can't seem to get a good picture without or with the flash. Her's are round too but don't show up much if her body is not warm from the bath or sauna. Very itchy at night. My 9 yr old has the itchy rash at her inside of elbow on her arm. dd8 also doing weird facial grimacing she's never done before last night. It's all freaking me out! Susan

Thanks susie, you are probably right, dd8 is much smaller than dd9 too so maybe this makes a difference but I better follow up and make sure it's OK for dd9 longterm. dd8 yesterday was crying that she hates her life because she has to take too much medicine and she has an itchy rash with bumps that have appeard on her arm and torso. Now I have to figure out what that rash all about. Susan

How can we not be neurotic with all we've been through! We are going through a backslide and it is acary. Hang in there, you are on the right path and you will make it through. I am starting to try to chart days in between to try to figure out herx or flare and cycles but I'm still confused with it all. Susan

Thanks, yes, I trust labcorp, we use them a lot too. I was just wondering, since this test is new, if it's accurate, you know, like the percentage that it finds these if the person has them. Maybe it's 100%, I'm just curious. My dd had this test done and they were all negative. I now think it was a herx or she had some other virus not on this test. Seems like a good test for our kids. There were other panels too but I don't have that info. Susan

Wendy, can you tell me more about the little red dots? I think I have what you are talking about on my arms and legs. Susan

Our LLMD recommends heat for pain and we've had success with the heating pad and baths. I hope it goes away soon! susan

Please excuse any typos, I typed this up quickly and can't bare to try to check for spelling. I would be interested in learning more about how accurate the report is, etc. but I have not looked into it yet. Lab Corp Diatherix Laboratories Respiratory Infectious Panel Viral Infections Adenovirus Coxsackievirus/Echovirus Influenza A - Human Influenza Influenza A - h1n1-09 Influenza B ParaInfluenza Respiratory Syncytial Virus A Respiratory Syncytial Virus B Rhinovirus Bacterial Infections Acinetobacter baumannii Bordetella pertussis Chlamydophlia pneumoniae Haemophilus Influenzae Klebsiella pneumoniae Legionella pneumophlla MRSA Mycoplasma pneumoniae Neisserie meningitidis Pseudomonae aeruginosa Syaphylococcus aureus Streptococcus pneumoniae Streptococcus pyogenes (Group Strep A) Anitbiotic Resistance Aminoglycosides resistance Cephalosporin resistence (Staphylococcal) Erythromycin/Clindemycin resistance Methicillin resistance (Staphylococcal) Tetracycline resistance

The test results came back today, negative all around. I am getting a copy of the report anyway since I am interested in the test overall. So I will be able to give more information for you on what it tests for tomorrow. But this was a confusing result since she still has a goopy cough and does not feel well. I am now thinking it was a herx and her lost tooth and of course she could have some virus that is not one of the 26 that they tested for. I don't know how accurate the test is or anything. Susan

The clay does not sound as bad as I expected. She is very resistant of having to take anything else as she already takes a pretty nasty concoction twice a day. I'll look into all these suggestions though. Thanks! Melinda, http://www.drugs.com/cdi/cholestyramine-powder.html This is what we are taking for bile binding. It is my understanding that it helps bind the toxins into the stool so you can get them out of your body instead of reabsorbing. Susan

Sounds great! Very similar protocol to what my 50 lb dd is on. I hope you see some nice improvements and not too much herxing. Keep us posted! Susan

I can finally start dd8 on her lyme treatment. I knew last week what the basic plan was so I had started her on amoxicillian in addition to her zithromax but I didn't know all the dosing, etc. She is 8 and 50 lbs. 250 mg M-W-F zithromax 1500 mg daily amoxicillian (2am, 1 afternoon) Flagyl 2x day on the 1st and 3rd Sunday of every month Diflucan once a week Nystatin 1 tsp daily My dd9 and I are on a bile binder (clostrid?) so I'm not sure why dd8 didn't get it. Could she be too small? Does she need one? She doesn't have anything to help get rid of toxins. I asked our neurologist about this, but now things are a little confusing while he is learning and taking over from our LLMD and he didn't get back to me about it. She can't swallow pills and so I don't know what to give her to try to help with the detox. I don't think I can get her to drink the clay. Any other thoughts? Our kitchen looks like a pharmacy now. I had my first thought today that I better hide all these bottles. Who knows what someone would think walking into all those pill bottles. Susan

Hello there! Glad you found your way, looks like you are on the right path. My girls were the same, helped by learning about pandas but not recovering the way I would have expected if pandas was the only piece of the puzzle. Since you are interested and have seen benefit from naturopathic treatments, I would suggest that you read Healing Lyme by Stephen Buhner. He gives a herbal protocol that can be used alone or in conjuction with antibiotics. Getting to a good LLMD is needed but I think you will like this book. Susan

She went to school today, felt very good this morning. But she went to the health room about an hour before school was over and took a nap. She is not feeling well now and she seems very on edge but it's not as bad as last night. The test results didn't come back today so I should know the results tomorrow. I don't expect much but I'm still interested in seeing the report. Susan

Hmmmm, I had not thought of all this as a herx. She had her last round of flagyl around January 22nd. Does not take it again until around Feb 20th. I have not noticed any cycles yet. I better start tracking this better. She started her lyme treatment around mid-December. Thanks for the quick support. It's so scary to see those times coming back. I'm hoping she wakes up feeling much better. I will post the results of the test. Our doc is expecting to see it come back showing just a viral cold type thing, but I guess you never know! Susan

My dd8 has a PVC (premature ventricular contraction) which developed in 2005. The heart specialist has declared it safe but I hope it resolves with lyme treatment. Pediatric cardiac involvement with Lyme disease Michael B. Alpert, MD, FAAP, FACC Lyme carditis: literature reports 3:1 - male : female ; the author believes it is the reverse. 10% of kids with Lyme have cardiac involvement Electocardiogram abnormalities described were: first, second, and third degree heart block, right bundle branch block, premature ventricular contractions (seeing more an more of this ), abnormal polarization (inverted T wave) Symptoms: chest pain, palpitations, irregular heart beat, low heart rates Chest pain from: (1) costochondritis which isn't very responsive to antiinflammatory treatment but does improve with antibiotic treatment; (2) myocarditis which can be serious and cause death; (3) unexplained Palpatation: (1) supraventricular tachycardia which is not well controlled unless Lyme is treated; (2) unexplained Irregular heart beat: (1) premature ventricular contractions; (2) premature atrial contractions; (3) unexplained Slow heart rate; (1) complete heart block; (2) sinus bradycardia

dd9 had been in a very good place for the past month or so after starting her lyme treatment. Her nutty PANDAS behavior had basically stopped. So I was very upset to start to see her losing it again yesterday. She's been sick since last Thursday with a cough, sore throat and very stuffy nose. I was assuming it was not strep since she's on so many abx and she was handling the bad cold pretty well. But I could see the manic, out of control girl coming back. I finally took her to the doctor today and he feels its a virus of some sort. He did a new test that is a Respiratory Infection Panel that tests DNA somehow, tests for 26 viral and bacterial infections, have you heard of it? The results should be back tomorrow. Tests for flu and strep and a bunch of other things. She (of course) seemed much better by the time we got back from the doctor's office but by the evening she was having inappropriate laughter and that edge to her humor and behavior and trying to push my buttons that tells me that she does not feel well. She could not sit still or wind down or stop... She also lost a tooth today, I am wondering if that comes into play with all this too. I don't know if it's pandas or lyme or both. Maybe it doesn't matter but I'm worried about sending her to school tomorrow and so is she. She wants to say she doesn't know what I'm talking about but she also says she feels "pandas'y" inside and is worried about going to school tomorrow (doesn't want to get in trouble there). She's not to her worst yet but it's scary to see again. Any advice, help, sympathy for me?? Susan

My lyme doc started me on it after 3 months. I don't know if this is typical or not but it makes since as she usually gets you used to the each stage before starting a new one. I would not have wanted to start TF along with all my other lyme meds. But my LLMD and I agreed one of our goals would be keeping me at work and the kids at school so we have been taking it slow and seeing how we react at each stage. Susan