Hopeny

You can treat your dog with augmentin, dosing is easily found on the web. I usually just tell people dd has chronic strep, that seems to be acceptable without getting anyone excited if i ever need to explain to someone why i sm doing something. I have done when dog comes back from kennel.

This is a supreme abuse of power, the government needs to intervene. I am wondering if the medical review boards have been notified? complaints filed? what about contacting human rights organizations? organizations for protection of children? child abduction organizations? I must say, these people are so silly, they jump to Munchausen by proxy as a diagnosis which is extremely, extremely rare and discount other illnesses which are exceedingly more common!

Hi Hopeny, just found your post, sorry new to this forum. yes that would work great! could you get me the name? thanks!!!! I PM'd you

My town is overrun with Geese, I mean thousands, and the town wants to euthanize them but animal rights advocates are up in arms. Geese are a known vector for ticks, I am convinced my 3 YO got infected at our library pond that has lots of geese. Deer population is out of control as well, I read somewhere a town had successfully all but erradicated Lyme by eliminating the deer population. If you combine this proliferation of animals, with the stuff that is proposed in Lab 257 about how our government (sorry I hate to sound paranoid but this book is pretty convincing) propogated ticks and Lyme, then Bill I am sad but not suprprised. I am going to have my lawn sprayed this year. Fortunately Virgina has just passed a new bill about how to inform patients about Lyme, given whay you all are finding in your yards in February!

Band 41 is inconclusive in regards to Lyme, but typically this would warrant a re-test. Did you test through Igenex or Stonybrook? If SB did they report all bands? Otherwise if it was Quest etc I wouldn't hold too much stock and would re-test with Igenex. Heart block with Lyme is an aryythmia and usually causes fainting as I understand, I am not a doctor so this is a bit out of my pay grade, I know about it because my DD fainted at school and the pediatrician told me about it: http://www.ilads.org/lyme_research/lyme_articles2.html http://www.ncbi.nlm.nih.gov/pubmed/17577848 Stomach problems can be a Lyme flag, many of the symptoms you are describing below were also my daughter's symptoms who has Lyme, PANDAS, high MycoP, and are typical symptoms of Lyme & the co infections. Recurring fever as you describe can come with Babesia, Lyme co infection and malaria like illness, also a parasite. If it were me I would take her to a cardiologist and also have an evaluation by an LLMD. Have you had a full workup by an infectious disease doc? To rule out things like those lake diseases, Powassan, etc? I would not count on an ID doc in regards to testing for Lyme but for all of those other things, Powassen etc. just in case this is not Lyme. Sorry I can't answer about rheumatic fever but based on the combination of symptoms you are describing I would look to do some very thorough testing. If you are in New York area I can send you info on a pediatric ID doc if it would be helpful.

http://leesilsby.com/enhansa-dosing-protocol we are using for yeast and inflammation, but see this ink for more info on herx/ die off

Can I ask if Lyme is in the picture? It can cause heart block

I recommend staying at the lower dose 150 mg for at least two weeks. There will be a die off when you start so you can keep it low to minimize the herx.

We have been using enhansa from silsby. It's always hard to know what's working but I have been very happy with it, my daughter had bad joint pain and it's gone (although now we are dealing with nerve damage from Lyme) I have the mom instinct that enhansa is really helping. Actually I just hung up the phone from getting a refill. It's not expensive and insurance may cover it. I would highly recommend, there are so many benefits

To add, my daughter tested negative for Bart but had symptoms, rages/foot sole pain. Four days after age started rifampin several stretch marks appeared on her arm. She is a thin child. The tests, except for galaxy, are not reliable for Bart. I am glad we treated her and did not rely on the test but went by symptoms, rage is a common Bart symptom.

If you are dealing with Lyme/bartonella I have found that burbur and parsley drops from nutramedix help a lot. You can put five drops in a little bit of water and wait one minute, then drink. Our doc said up to four times per day. She also suggested charcoal for rages but I have not tried yet. Sorry I know how hard it is. I also find baths are very soothing, when all else fails I put her in a bath with ahava Dead Sea salt (we are now using Hope flower salts) and that seems to do the trick. Finally I think it's fine to use melatonin to get them to sleep.

I have a wonderful ent who told me he has done 20 or so t and a's just for pandas, in ardsley, ny does that work?

I just got the stat results and today she makes it in right at the low end of normal range which is a relief. But still curious to hear any suggestions/feedback. In addition to the abx I am using an herbal anti microbial Samento and NAC, should I back off?

I'm freaking myself out and probably just need to calm down. She doesn't seem to have any sign of babs, fevers, sweats, etc. She has tested + for ehrlicia, anaplasmosis, myco, rmsf and we are treating for Bart based on symptoms, stretch marks came out 4 days after staring RIfampin so I'm pretty confident she has that even though test was negative. Liver enzymes have been ok since Doxy, I remember them being mildly elevated we thought from ehrlicia, anaplasmosis. In my reading today it said > basophils amd eosinophils indicate parasitic infection and she is really at the bottom of the range for those. If she has Babs too I am going to go off the deep end . I will ask LLMD.

DD was at LLMD and got bloodwork back from three weeks ago, her wbc and absolute neutrophils are low. She is on Rifampin/Zith for Bartonella, lyme, also has PANDAS, Mycoplasma. Well that was a mistake to do any internet reading because it has me freaked out. He did a stat test today to see where we are and figure out if we need to take her off meds, which will then be another issue in regards to strep. ugh. Anyone deal with this? Any recommendtaions or supps? Pending the outcome I will call our integrative too and maybe Dr. B. wbc 4.4 low range of 4.5-13.5, absolue neutrohils 1350, normal 1500-8000.

Are you using cefdinir as not to use Rifampin for Bart due to your DD's age? I think all of these suspension meds have nutrasweet in them which IMO is a terrible sweetner and gave me horrendous migraines. I hope this time is the charm. Maybe you had a herx rxn before?

Lisa3 The more I read the more it seems that many of the PANDAS kids also have Lyme and vice versa. Mycoplasma is also carried by ticks so it would be worth exploring. Band 41 is known to cross react with a number of illnesses, but it is also commonly the first band to show up with Lyme, so its hard to make any conclusion on Band 41 alone. LLMD's assess physical symptoms along with Western Blots by the more sophisticated Lyme testing centers such as Igenex and SUNY Stonybrook, request "show all bands". Quest and standrd labs only test for a small number of strains of Bb while Igenex and Stony brook test for hundreds. The CDC "surveillance" criteria that most doctors refer to was never intended to be used for diagnostic purposes but for research. Unless a doctor has had specific Lyme training it may be very difficult for them to spot Lyme except in the most obvious cases. IMO and respectfully, the PANDAS doctors including Dr. T. should be more careful in how they test and what they tell patients about Lyme, and probably should just refer out if there is any suspicion. Because if your child does have Lyme you could waste years with treatments that are not fully effective. As well, not every PANDAS child has Lyme. In any case it is good to rule it in or out with a qualified physician. In my DD's case, who has +Lyme, +PANDAS and +Myco, her physical Lyme/co infections symptoms have been: extreme lethargy, joint pain (single sided and transitory) neuropathy (limbs fall asleep), blurry vision, stomach pain, headache and dizziness. Her OCD was pretty clearly PANDAS as it resolved almost immediately with abx, as did much of the extreme anxiety. We have some residual psych stuff thats hard to discern what is what, rages, situational anxiety, saddness, non existent self esteem, perfectionism, etc I call it collateral damage. I hope hearing about these symptoms can help you figure out what you are dealing with.

I re-read your post on my computer and also wanted to mention that some of the symptoms you mention can also be Lyme/co-infections. The knee pain is a classic Lyme symptom, again I think you need to rule out many things. Sorry if this seems overwhelming, but my recommendation would be a full infectious disease workup, a neurology workup by a PANDAS knowledgable doc as provided above, a Lyme test from Igenex and an evaluation by a Lyme Literate doctor. One other thing to consider, as you mention a kitten, you should test for Bartonella with a good lab like Galaxy Labs, you might ask your ped to do this. Bartonella is spread through ticks and cats, especially kittens, and can be difficult to test for which is why I recommend Galaxy. The treatment for Bart can start with Rifampin and Doxycycline paired. Does your DD have any purple streaks that look like stretch marks? Sometimes these will show up with Bart, sometimes if you have it they only come out with treatment. When did she get the kitten? Did it coincide with these incidents? You will need to act as a sort of captain with all these doctors if you do not have a pediatrician on board to help. Keep copies of all your tests and do not completely rely on the doctors for their interpretations, do your own research on these boards and the internet. Mainstream doctors may discount findings that are significant. Please note your child can have multiple infections. It seems that one major infection causes chaos and enables others to flourish. This info may be helpful: PANDAS: http://www.ocfoundation.org/default.aspx?id=2529&terms=pandas Lyme: http://www.ilads.org/files/publications_pediatric_school_psych.pdf Bartonella: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546763/

Sorry to add the costs of travel, doctors and testing can mount up pretty quickly so it will be good to get a financial plan together so you are prepared and the cost of treatment doesn't stand in your way if getting your daughter help.

Madismom I am so sorry you are going through this. Many of us have had similar types of stories. I think Kerry has given you some good advice, personally my advice is to get an emergency appt with one of these doctors and get you and your daughter on a plane. My guess though we don't see him is that you could get in quickest with trifileti who is also a neurologist which might be your best bet due to seizures. There is another neurologist in New York, I will locate and pm you name , who is supposed to be an excellent diagnostician . I know how scared you must feel as I have felt scared and alone too. You are doing the right thing by advocating for your daughter. As one of my wonderful doctors told me if a child complains of pain it is significant. Today your daughter starts the road to recovery.

I was thrilled to find this as I usually get the blank stare from our not terribly helpful school psychologist. It really spells it all out for educators .

So glad you have found something that is working. If you have not explored this, DD3 had chronic stridor (even without croup) for months. (I was a wreck) After I became totally frustrated with our ped who shrugged it off, I took her to ENT who took one look and said her throat is cobbled, she probably has reflux which is irritating her throat and causing stridor. He put her on prevacid and stridor went away along with all of the ear infections (about 1 or so per month). Just something to explore if you have not already...

http://www.ilads.org/files/publications_pediatric_school_psych.pdf

http://www.ilads.org/files/publications_pediatric_school_psych.pdf

kleek this is a very interesting post. I have no answer but similar experience/questions/mystery. My non PANDAS DD3 has chronic croup (has immune issue). I took her to Dr B as immunologist and she had bad croup/stridor/sinus infection the day we went (was really fortuante as PED ws not helping) end November. dr b put her on steroid taper and then zith. After taper ended, we found out her Lyme infection from August was still active when blood work came back. so Dr J put her on 125MG/50MG Cefdinir/Zith. In 4 days on combo, my child who has not slept through the night in 3.5 years suddenly started sleeping through the night. She has sensory issues and I wondered what of the problem was behavioral and what was medical. Now I feel the sleeping is 100% medical. I had 6 weeks of sleep and then a new episode of croup/3 day steroids which made her bonkers and her sleep is off again. Also, Melatonin started working on her after starting the combo to fall asleep when previosuly it did not work. This combo was a real breakthrough for us, I am curious to hear what others say. also I have to second LLM's comments, based on so many posts I have read there does not seem to be adequate screening for Lyme via the PANDAS docs