Hopeny

It could be an effect of steroids, ie "roid rage". My kids go crazy with short courses of steroids.

He suspects Babesia?

Thanks SSS we have a window in between soccer ending and camp. My doc said there's little issue with cipro and children interestingly . Good news for you on the myco , I'm hopeful this so have some impact

My daughter has never tested positive for Bart but has stretch marks in her arm (BMi of 15) foot sole pain and psych issues.

My four year old had a life threatening reaction including fever of 105 and severe bubble boy level neutropenia. The emergency cardiologist we saw who figured out what was happening said she thinks it should be taken off the market. Please know that drug reactions to it may not be a rash but can be many other severe symptoms. I know llmds like to use it but I would really recommend having rifsmpin compounded. My local pharmacy did it and it was one of the only meds my dd liked the taste of. For a more healthful version lee silsby will compound it for you but I went with my local sugary blend

Dr. Cameron is very experienced and well respected, and I think it's a good idea to get in quickly, my friend saw him and was happy, he's just not integrative. You might want to consider putting yourself on Dr. H's list in the meantime, even if it's the PA list. His book is very interesting and he seems to have extensive experience with many different types of protocols. Someone recently posted a paper Dr. Cameron co authored on PANDAS/Lyme, can't recall which post. I actually waited a year to see our current LLD and saw someone who we could get in quicker to in the meantime.

Great news. So in the end do you think this is Lyme/bartonella?

My dd's levels have been very high since we started this but igg only. They doubled from November to feb when she had a huge spiral down. We ended up putting her on low dose zoloft and stopping all abx therapy in march. We just started 30 days of cipro to try to get at the myco. I definitely saw a bit if a herx. I will post if we have any success with cipro. I hypothesize that myco is a root of dd's psych issues

He is the present of ILADS for Lyme literate doctors. If you think Lyme or co infections might be an issue he might be a good start . Due to the complexity of your situation you might want to consider Dr Horowitz in New York. Dr Horowitz describes his approach on his book "Why can't I get better?" and describes combination of conventional and herbal approaches

Deedee can you share what igg levels you got down to?

Thanks everyone this is really helpful

In an attempt at a return to normalcy, DD is attending outdoor day camp. Surrounded by woods in an endemic Lyme area . I am thinking of washing her clothes in permethrin in addition to other precautions. Have agreed with lld to treat her for Lyme at the end of the summer regardless of known bite or not. Was wondering if others had done?

I would love a margarita right about now. Can you tell me more about what your doc said about RMSF? Symptoms, treatment etc? Both my kids had mild IGG responses to testing for it. I theorize that it may have been from me, I have red spots on my outer palms, one of these days I will get myself tested. I have not ever found much on it more than CDC type summaries. Enjoy your boozin'!

I was scared to put my DD on it because it is a "big gun", she ended up taking it for a year. It completely cleared out all strep and I have to say she seemed to do fairly well while on it. We monitored CBC etc and liver function while on it. I spoke with a cardiologist who much preferred it over Bactrim which my younger daughter had a life threatening reaction to.

I know that there have been some discussions on camel's milk, I stumbled on this and wanted to share: http://www.niaid.nih.gov/topics/coronavirus/Pages/MERSCoVStudy.aspx

SSS I don't know the difference but might be worth calling Millford and asking....complication I just got second part of labs, DD came back IGG+ for Borrelia hermsii. I need to talk to LLD. She never had fever however he told me that it can cause psych symptoms which is why he was going to test for this. I will update on as our world turns when I speak with their office.

I don't want to be misleading because I don't have full confidence in any one test, however this new test is a PCR test that looks for DNA of Borrellia Bugdorferi and Miyamoti (sure I have butchered the spelling), two primary strains of Lyme. IMO the western blot and ELISA are not very useful tests. After almost 2 years of treatment we have a negative test! Combined with the general lack of Lyme symptoms I feel that for the moment Lyme is not in the picture for us. We opted to do this test instead of advanced labs because the cost is much lower and also because of the controversy surrounding advanced labs. I am not implying anything negative about advanced labs because I am hopeful that they will overcome the questions. Milford underwent intense scrutiny by the CDC and apparently they were satisfied. Milford does not grow Bb so there is no chance of accidental contamination, they also use a technique that looks for minute amounts of Borrelia DNA as I understand it so its highly senstive. I have not comfortably ruled out Bartonella though, because of the Galaxy lab test high cost and need to do 3 draws I have not done that test. Our plan for the moment is to keep DD on very low dose Zoloft, re-test Millford at the end of the summer as we live in an endemic area, and continue monitoring ASO and Dnase and treat accordingly. Her Myco level has dropped to half of the crazy high February level, but is still double the normal range) so will continue to see if this goes down, or may treat with Cipro as nothing else has worked. I hope this is helpful for people.

My DD10 has had Lyme, strep, myco - etc. She was doing extremely well until something sent her off the edge this January. She had a sinus infection but we had also just tried some new herbal remedies and antibiotics, I don't know what it was but it got really scary. Day by day I saw gradual coming back but strong OCD remained. In March I took her off everything, even probiotics, and continued to see gradual return to normal. Recently I decided to start Zoloft because she is 10 now (8 when this started) and I just really want her to have good childhood memories and also to take some stress off her, so she can succeed with the CBT. She had a bad rxn when we tried it once before but she was on Biaxin at that time which I found out interacts with Zoloft. We started her at a minute dose 12.5MG for 3 weeks and now have upped to 25 MG. I am definitely seeing that it is taking the edge off, I see some flexibility coming back etc. Will stay at 25 for 3-4 weeks and see how we do. I recently took her to a neurologist to evaluate her for a migraine. She is a PhD/MD with a special interest in ADHD etc. I discussed the entire history with her so she could get the big picture and while she said she is "on the fence" about PANDAS but will work with other doctors in an open minded way, her thoughts were that my DD is prone to OCD/anxiety etc and that it is exacerbated by medical conditions. I have always thought that a completely holistic approach is needed, and in my case I have widened the spectrum to now include a very low dose SSRI. I would like to give my DD every chance to beat this and for this time that includes giving it a try. Good luck

SSS I was ready to do advanced labs but my doctor recommended the Milford instead as cheaper, faster and less controversial. Something go discuss with your dr

May I ask was the NY rheumatologist a woman named Dr. I...? If it was just my experience she was the worst, most condescending MD I have ever seen. She misdiagnosed my DD and I blame her for my daughter's illness getting worse. Pathetically I was told she was an expert in Lyme. Her suggestion was to put my then 8 year old on pain and psych meds. Anyone that tells you a child has to learn to live in pain is not only incompetent but a sadist, JMO and other MD's I have spoken to about Dr. I.

I would just ask the doctor to tell you the brand to see if it's this one

I'm just bumping this up for others that may find it useful. I understand there are different views however I have personally found it helpful to understand the basic camps, science and background in making assessments for my kids.

Sorry you are going through this. To echo what rowing mom said, according to ILADS diagnostic criteria and research your Lyme test results indicate reactivity to Lyme specific bands on the western blot. I'm not a doctor but some of the symptoms you describe are extremely similar to what we have experienced from Lyme. Cardiac complications are well documented from Lyme. Regarding the rash on the hands, I urge you to do some research on the symptoms of rocky mountain fever, anaplasmosis and ehrlicia, Lyme co infections. In contrast to Lyme which is difficult to test for, these are easy to test for with standard labs. With all due respect to Dr T, whom I do not know, based on posts I have read he does not seem to have the experience with lyme patients to be able to rule it out. I admire Dr. B. and he is gaining more experience but not quite there. regarding the butterfly, as far as what I have read that is a hallmark lupus symptom, again you need the appropriate testing (ANA etc)/expertise to diagnose. Dr O is excellent and I am sure she can help with your questions, including Lupus. While she is not our primary Lyme doctor, based on my experience with her she has enough experience with Lyme to recognize and treat it. She has the advantage of traditional medical training at top institutions with many years of practical experience in integrative medicine.

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I think you are seeing dr m in regards to the rages have you discussed bartonella? Trying rifampin/zith?