SSS

Well, an on call Doc from the practice phoned in Ceftin, and I'm bringing her in tomorrow for a culture- nothing like trying to give a 10 minute synopsis of a PANS medical history to a new Dr. sober you up *sigh* These kids go through so much. At least she got in the first day of school, settled, and got her 2 best buddies in her same class. Looks like she'll be out for the next few days, while I boil the house in scalding water again. Thanks for listening (lol) Anyone have magic tips on Impetigo, I'll take 'em.

Hi- first time dealing with this- 2 weeks ago, dd's face, she had been off all antibiotics. Got full strength Keflex - 10 days, with cream for blistered rash, I washed and washed this house like a madwoman. Finished Keflex 2 days ago, all looked clear- today first day of school, face blotchy, I think nervous hives? No, pick her up, horrible Impetigo crusted over her beautiful face. Azith. is moot at this point, such a history. Dr. calling me back. Any ideas what I should ask for? A Bicillin shot? (dd will kill me, but...) I don't know! This timing is not good! Thank you--

Oh dear, I hope you aren't referring to me about being shell shocked/negative replies about my comment that our LLMD's will only treat if symptoms, and you stopped coming to the board. At the time I was thinking of your title 'DH positive test, LLMD says he doesn't have Lyme' and then read your DH believed that- thinking then your DH must not be sick w/ symptoms. And, I was thinking what my LLMD told me about my other 2 healthy, neurotypical children, that even if I decided to test them, and their tests came back showing exposure to Lyme, that LLMD would not treat because they are healthy and lives are not affected- I'm sorry- did not know you were referring to your children, who were suffering. Doing the best we can, sometimes we read fast, don't have all the details- Very supportive board here- wishing your family health -- S

Thyroid?

Is it wrong to say I wish an SSRI helped my dd? I think that does sound wrong. Sorry, but after hearing OCD around American Girl dolls all summer, I am really glad school is starting tomorrow. I can't remember which SSRI we tried, it was last Spring, and it had the completely opposite effect- old, scary OCD issues I hadn't heard in years came back, like a dog coming through her bedroom window, and a character out of a K book called 'stripey girl' (*shudder*) Took her off, didn't hear of those things again.

Well, I am going to post on this forum, an article I am going to reference mentions autism, please no one get offended. My topic is OCD, which is the predominant symptom of PANS. Wish it was all cut and dry: Do A, B, C, D, and it's fixed. It has not been like that for us, and others here, so perhaps this might help someone. I found a paper written by Amy Yasko from 2002 (!) that references OCD, inflammation, strep infections, and mainly, excessive glutamate in the brain - addictive behavior, and OCD seems like addictive behavior to me. I won't begin to try and give a synopsis on a Yasko paper ;-) http://www.dramyyasko.com/wp-content/uploads/2011/08/The-Role-of-Excitotoxins-in-Autistic-Type-Behavior.pdf Here is a paper on excess glutamate and OCD written in 2012 from the International OCD foundation: http://www.ocfoundation.org/glutamate.aspx And, a list of high MSG/endotoxins foods that release glutamate: http://www.msgtruth.org/avoid.htm Ibuprofen is known to suppress glutamate. So, on a personal note: this completely fits my kid. NAC/n- acetylcystine modulates excess glutamate- several recent studies, especially for Trichotillomania supression- I realized my dd has been chewing Trident gum excessively all summer, like all day (aspartame) other high foods on the list - she started skin picking for the first time- PharmaNac stopped it. Then I stopped giving it. Then, she picked up Impetigo on her face- back to antibiotics- OCD has been ramping up all summer- bought some more NAC, going to supp vitamin K, she has always done well with taurine, threw out the gum! (yes, I know about Spry) I've tried to supp GABA in the past- disaster - so it's not as easy as that to re-balance. We do not have CBS or sulfur MTHFR- Anyway, find this all interesting- maybe it might apply to someone else for help.

Thank you Laura-----xxoo Lauren, I don't know what was said here, but I keep getting confused: do you have a child yourself struggling with OCD or not? Some posts say you do- I understand privacy, but as a parent, this article was very poignant.

Well, I just read that a certain legal issue may not be cleared up for Dr. J :-(. Incurring continuing costs for him, not sure how long he plans to stay in practice? I am not sure, don't want to start rumors, but, possibility. Not sure where you live, and I do realize the initial appt. with a new LLMD is big bucks, but.... maybe something to think about? It is very difficult to answer what are the best antibiotics for Lyme- Some excellent books: http://restormedicine.com/beginners-guide-to-lyme-disease/ This book is very current, and one of the best, IMO.

We did the Listening Program through an Occupational Therapist for Sensory Processing Disorder some years ago- For 2 months, 2x a day, with special headphones, she would listen to a selected CD from the OT, changed out every 2 weeks. I'll be honest- it didn't work. It's hard to describe- when very young, the sounds seemed fear based- vacuum, hair dryer, sent her running, came unglued. Now, certain sounds (not the volume) more like certain people talking, just irritate the %#*+ out of her- she will get angry. Not all the time- in and out. I think it is glutamate- based on our trial with PharmaNac (re: Stanford study in autistic children reduced irritability and can reduce Trichotillomania/ form of OCD) due to possible glutamate blocking capabilities. She was picking moles off her body, and adding PharmaNac stopped that action- and I think reduced irritability. I also am very loud volume sensitive - and actually wear earplugs around the house a lot- but don't have OCD. Okay, I do get irritable We are out of PharmaNac, it's expensive, but... I think I'm going to have to buy some again. Will you please let us know how your trial of Riluzole goes?

My dd recently came down with Impetigo (had not been on antibiotics) she is 58 pounds, and was prescribed Keflex 500 mg 2x a day- for 10 days.

I don't know if this helps or not, but, I personally went off an SSRI last January, having been on it for about 5 years. I went cold turkey (like an idiot, maybe, but I got it over with- it was a smaller daily dose) It took, I feel, about 5-6 weeks for my neurotransmitters to re- balance themselves out- It was not fun- in my case, I was weepy, and had 1 panic attack- I knew it was withdraw from the bloody SSRI- and, proved to be true. So maybe hang in there with that part, if you really want to gage the SSRI, IMO, it can take 6 weeks for your own neurotransmitters to work on their own.

With my dd's 2nd high dose IVIG, there were NO turning of the pages. None. Just a happy content child out the gate. For 4-6 weeks. Then it all wore off. And who knows if we did another, would the results be the same? Was it that particular pool of blood donor antibodies that created the magic? Dunno.

The vitamin C nearly always shows low on everyone- it is a water soluble vitamin that passes quickly through the body- nurse from Great Plains told me that once. Okay - this next bit, almost embarrassed to suggest, you are such a smart old timer, but when you keep saying the strep titers are so high, and keep staying high: You've had every member of your family checked, right? And do you remember the gal who came on here and said her DOG was carrying strep? Little .02 cents.

We got back from our Ped's office - (we are no longer with Kaiser, and this office is, how shall I put this, reasonable, caring, and open minded) Anyway, it is the start of Impetigo on her face- crusted over to the honey colored this morning, slightly spreading- we got full dose Keflex for 10 days, which is not one she has been on, the cream, and an anti-histamine that the Dr. thought might help my dd quell the urge to pick. I wonder how long strep might have been lurking- we never test positive in the throat with dd - never high titers- saw an uptick in OCD a few months ago, did an Azith Z pack (she has had so much Azith, I think it does very little now) Wax and wane, then, she started picking incessantly at skin moles, added NAC, that went away... so stopped the NAC daily, uptick lately in OCD again, but, it is manageable OCD at this point in our lives, so .... Then Impetigo showed up for the first time ever yesterday. What a long strange trip it's been.

Hi- Sorry no- one replied- how is it going? What's happening with impetigo? My dd developed what looks to me like impetigo on her face yesterday- 1st time dealing with this, waiting to call our Ped. when they open. I can't figure out what it is- but I think it's impetigo, and I am trying not to freak out.

It depends on what your treating Dr. prescribes. Haven't you gone round and round with clostrida? (c. diff.) Flagyl is used for clostrida, parasites, or cyst busting Lyme spirochetes.

Yes, I am sending you a PM.

Wow. This gave me tears.

I think the strep strain in probiotics and yogurt (Strep Therm,) is extremely individual, and I am convinced it does indeed set my dd off, through many trial and error with yogurt (it is not the dairy). I would try the 30 day Diflucan, and switch probiotics- JMO, and seems to be what your intuition is telling you. Custom Probiotics brand carries excellent probiotics without the strep strain, and Klaire.

(Quote) 'Originally, T. Anna made a comment about the nurses and socks, but my personal opinion is dress your kid right if they can't dress themselves. I'm sorry, but that's how I feel.' (Unquote) Lauren, you have stated previously you have a son who is going through your same protocol, but, 'had more going on' Does your son, or you, have OCD? How is he doing on this protocol? Can you imagine a child who has crippling OCD around their clothing? I can. Been there, done that. Trust me, there is no 'dress your kid right' when in the worst of episodes, in order to get them out the door. You do the best you can to get them out the door without a complete nervous breakdown, literally.

I found this online: (pasting) Dr. Breitschwerdt stated what most of us Lymies already know…. that not too many physicians know a thing about vector borne diseases. He acknowledged that veterinarians are going to have to be the ones to educate people. He, also, emphasized on the importance of veterinarians role in helping to stop the spread of these diseases from animals to humans. (Yes, you can get vector borne illnesses from animals.) According to Dr. Breitschwerdt, Bartonella is transferred via fleas more often than ticks BUT that most all the ticks he is testing show positive for one or more strains of Bartonella. He stated that if an animal comes into a vet clinic with a flea infestation, that he HIGHLY recommends that the vet wear a mask because you can get it from the feces of a flea or an animal. Dr. Breitschwerdt could not emphasize enough the dangers and the importance of detecting, preventing, and treating Bartonella. He views it as one of the more serious illnesses to worry about. He stated that vets should test for it more often and that there is more around than the average vet would like to believe. He even went as far as stating that vet’s, themselves, should be tested and that they should consider NOT donating their blood to the Red Cross. Bartonella is not a new disease. Doctors have known about it for almost a century but they referred to it as “cat scratch fever”. Cats can carry Bartonella in their bloodstream for months to years. It was thought to be just a short-lived infection in humans and no big deal. Bartonella is considered a co-infection of Lyme. There are at least 30 different species that researchers know of presently and 13 of those have been found in humans. With researchers ability to now find and diagnose animals and humans with Bartonella, it has led to its identification in patients with so-called “chronic illnesses” that the medical professionals hadn’t ever been able to link to any cause before. In an interview with Dr. Mercola, Dr. Klinghardt even states, “The issue with Lyme Disease… that many of us have realized that pretty much all chronic illnesses are in one way or another way… the outcome of chronic infections or at least contributed to by chronic infections.” When a person is infected by Bartonella, it makes it’s home in red blood cells and in the cells that line blood vessels. Just like the borrelia burgdorferi… the bacteria that causes Lyme… can hide, so can Bartonella. Just like Lyme, it can affect multiple organs and organ systems. It’s ability to hide makes diagnosing it very difficult. That’s why it is so important that you see a Lyme literate doctor. Please contact us to find a LLMD. Some common symptoms of Bartonella are severe insomnia, migraines, anxiety, constant worry, agitated-depression, panic attacks, bipolar disorder, depression, agitation, autistic-like symptoms, hallucinations, memory loss, brain fog, and aggression sometimes referred to as “Bartonella rage”. A person may only have just one symptom or many of them. Bart can, also, cause endocarditis, chronic fatigue, tenderness in muscles, chronic pain, pain in the bottom of your feet much like plantar fasciitis, abdominal pain, vomiting, fever/chills, electric shocks in your organs that can come out of the blue, pins and needles sensation or numbness, neuropathy in any part of your body, ringing in the ears, joint pain, skin rash, stretch marks anywhere in the body, thermal dysregulation, mitochondrial dysfunction, frequency, urgency, cystitis and/or excessive day sweats. Bart can be misdiagnosed, just like Lyme, as Rheumatoid arthritis. If you’re RA factor is normal, but you are told you have RA, it’s possible you could have Bartonella (or Lyme) according to Suzy Cohen, “America’s Pharmacist”. According to Dr. Breitschwerdt, not only should vets be careful of exposure but also people who are around farm animals, pets and arthropods such as fleas, ticks, and lice. That is correct… if you have a pet, you are at risk. These people have the highest risk of being infected by Bartonella. He warns that people should take precautions to avoid arthropod bites, arthropod feces, animal bites or scratches, and any direct contact with bodily fluids from a sick animal. Dr. Breitschwerdt has also published research showing that Bartonella can be transmitted from a mother to her infant at birth. Dr. Breitschwerdt states, “We need to understand more about the way this bacteria functions in the human body – how and why it is so successful at hiding and causing persistent infections. We also need to get the word out to the medical community about this pathogen. Just knowing what to look for may end up giving patients with unexplained chronic illnesses better treatment options.”

I think in either care, you'd be blessed and fortunate. Maybe call both offices and get pricing, availability.

The LLMD SF Mom suggested to you, he is near you and frankly, one of THE best, has a new book coming out: http://www.lymebook.com/why-cant-i-get-better-solving-mystery-lyme-chronic-horowitz.htm He describes Multiple Systemic Infectious Disease Syndrome - Basically, the immune system is shot down with infections, allowing more to come in, need heal in layers.... Not unusual for chronic Lyme and co-infection bodies to also have viruses running high and rampant- our LLMD had the perspective get the bacterial infections under control, then the body can deal with the viruses. Different thoughts on this- Also, thinking now seems to be treat parasites first. Hang in there- Hope you can get the poor girl sleeping regularly soon.

My opinion, FWIW, is Cordyceps wouldn't 'trigger' a flair- Now, if combined with Buhner's other herbs, say the protocol for Bartonella, there may be some die off, if infection is still present. I am doing the Buhner Bart protocol outlined in his new book- I think it's been a good 30 days now- While I have made significant gains from Lyme and Bart treatment (which I both tested positive) with antibiotic LLMD treatments, and did various Byron White and other tinctures at that time period, I went off all treatments last January. Around May or so, I started having 'stomach attacks' again and more frequently (despite remaining GF), and feeling more mood issues- wondering if my Bart was re-surfacing- read the Buhner new book, and was very drawn to it- the explanations and methodology. I am also working on adrenal health, something rather glaring obvious, what with decades of high stress living, etc. that never has been addressed. Yes, I feel the Buhner protocol is releasing more Bart- I have more peace internally, my stomach issues are better- I can feel it working.

Sorry, I guess I momentarily forgot he is 15. My dd was very young when we started bio-med type stuff, before she could swallow pills, and she knew I was masking supplements, it still tasted bad, but she never got sugary stuff any other way, and, I was hard- core- You have to take this stuff, or you don't get X, Y, Z. Wish I had better advice- some of the chewable probiotics made for kids in the cold section at Whole Foods are tasty- colored, Animal Parade, I think... maybe 3 of those?