Hopeny

I am in a similar situation looking for a pediatrican who will be flexible. I think DCmoms approach is smart and what I plan to do. DD got stitches this week and we had to go to Ped for a wound check, have not gone back in months for anything since I realized it was fruitless to see them. Ped started asking me questions about why DD was already on ABX and I said "she has Lyme and a number of other infections, including strep infections which caused severe psychiatric symptoms. She is being treated by an immunologist Dr. B. and I will discuss another time if you are interested." ER doc asked me the same and I gave her a similar response. I do however agree that it is a good idea to have some testing done to evaluate other possible causes. When we got the Lyme dx I first got DD tested by a Lyme friendly pediatric infectious disease doc. (in NY if this helps I will PM you) This uncovered her elevated strep titer along with some other conditions that need treating, helping put more pieces of the puzzle together. It also importantly helped us rule out some other possible issues, Lupus, Thyroid etc - thank goodness for some positive news! My more conventional infectious diease doc cousin read me similar riot act as your ped and suggested the same, specifically that I go to Mayo clinic and have DD tested head to toe, so I dutifuly went on said website and looked at list of the hundreds of conditions they treat - had a good long laugh (maybe I should have cried) when I clicked on L and found Lyme Disease is not even listed. Unfortunately, what I have found is that most people are close minded until something like this happens to them or someone they love. If their happy, normal child suddenly became suicidal and has so much leg pain that they cannot sit on the floor, or whatever the case is, I would bet they would pursue all avenues to help restore their child's health. Had I listened to conventional doc/ped, DD8 would be on painkillers and the way we were going in a psych hospital.

Vet told me yesterday when I asked her 1,000 questions about it that the Frontine actually kills the ticks. But she said you still need to check dog. Treating the dog bed is a good idea I am going to borrow!

I am doing both doggie Lyme vaccine and frontline every 3 weeks, along with keeping fur cut short and limiting outside time...

Lilly - I joked with LLMD that we would have been better off staying in concrete jungle than moving to the suburbs. Seriously thinking if we should consider moving, then I remembered that visiting friends in Arizona we were warned to be careful in back yard for snakes and venemous spiders, and I was worried about DD playing on rocks that were regularly sprayed to keep snakes and spiders out. So am now trying to find a balance in everything, and checking for ticks - along with looking into tea tree shampoo for the kids.

I have a question on Dr Trifiletti too but starting a new post as not to sidetrack this one

PM sent.

Just want to add about Doxy, we just saw LLMD and he prescribed 30 additional days but warned me to be on the lookout for headaches, Doxy can cause increased intracranial pressure. Headache is the first sign. Just important to be aware of.

Thanks for this study which is very interesting. My DD8 has had sudden onset of severe psychiatric symptoms with leg pain, exhaustion, dizziness, brain fog (suddenly became suicidal), she is + for Lyme, Anaplasmosis, Ehrliciosis, Strep titer elevated at 192 and Myco IGG 5. We are seeing LLMD and and saw Dr. B's PA Jennifer (though he came in to consult during DD's visit - I really like both of them, very thorough) We are trying Dr. B's suggestion of Biaxin/Augmentin for 30 days first which he said will cover Lyme, Myco and Strep. Have already tried amox and short course of Doxy with some relief of symptoms. LLMD prescribed 30 days of Doxy but want to see what Biaxin/Augmentin does first. My question is, what Myco levels do your kids have? Trying to understand where DD is on the range.

Thank you, thank you to everyone, I feel something of everyone's posts. I decided not to send DD on this trip. I worry too about sending her to other houses with pets, but then on the other hand we just got her a dog because she has been so despondent and wanted one so badly - he is definitely helping her feel better. He is a rescue which makes me more nervous, the first thing we did was take him to the groomer and got most of his fur got off, then put tick repellent on. We are not taking him outside much, I am hoping they will rescue each other. On a side note, I find it amazing that they test dogs annually for Lyme and the co-infections, yet the don't do it with people in endemic areas! I promised DD she could go to sleep away camp next year, many of her friends are going this year (they go really young here, only second grade) and she was very upset that she could not go. I guess I will cross that bridge when we come to it.

DD is suffering so badly from late Lyme. We are knee deep trying to get rid of it. I ripped out all the bushes in my back yard. Should I let her go on a class trip to a nearby nature center located in the woods? She has thick curly hair and I think all but impossible to find a tick. My first instinct was not to sign permission slip, but I am wondering if I am going overboard. What do other parents do?

We just gave my 8 yr old Doxy for Anaplasmosis. They gave her 5 days. She has late Lyme, major psych symptoms and leg pain. She was on high dose amox and the psych symptoms (suicidal) worsened dramatically, but she seemed to get a lot better on the Doxy very quickly, I would actually like to try a second course of it. At this stage, things being so so so bad, I figure if she develops dark teeth we can get her caps. I would rather have a healthy , happy kid with dark teeth than the suffering she is going through now.

My DD has IGG+ for past Ehrlichiosis and IGM+ for active Anaplasmosis (in addition to Lyme and Mycoplasma and elevated strep titer). She was treated with Doxy for the first two, it is the only treatment for Anaplasmosis and I thought Ehrlichiosis as well, even in children. Please double check me on that. I have not read of Zithromax or Augmentin for Lyme or co-infections, but I am not an expert. I check Burrascano's guidelines any time I have a question. He goes into detail about the coinfections and treatments, and why different abx for which. The Doxy really seemed to make a difference. Good luck.

They don't seem to like to use Doxy in kids but it worked so much faster/better than Amox, could also be that Amox did a lot of the work and Doxy given after is getting all the glory, hard to know, we just saw such a major improvement. DD's emotional state was going off the charts on Amox but this may have been a Lyme herx, not sure. Azith does not work in Lyme at all but I can't recall why. DD has very high Mycoplasma (labs were a 5, normal cut off range was under 2) We are seeing Dr. B's PA in 10 days, seeing a PANDAS/Lyme (I think/hope) literate neurologist and have an appointment with a well known agressive Lyme "guru" next week. Today I went through the Neurologist's patient questionaire symptom checklist and was completely alarmed to see that I had checked many, many boxes in the neurological symptoms section. I really appreciate this forum, this is the best I have found for answers. Thank you, I hope your DD is healthy and happy.

Thank you, we are watching her closely. I am hoping to look back one day and see this time in the past. Today was a good day. Praying for yours too and all of these children.

I'm glad you're going to look at lyme and co-infections, because honestly, if doxy is working, that would lead me to believe you may very well be dealing with lyme (that's the main drug used for it.) That doesn't mean, though, that strep or other infections and/or environmental triggers are part of the picture. DD is sooo much better today, for the first time in 4 weeks I feel like I have my daughter back. It cannot possibly be the Zoloft, has only been 3 days. I think it is the Doxy... amazing she only took 5 days of it. She has high Myco IGG (5) too. A perfect storm. But I agree, the Doxy success has to be strongly consdidered. It's all sometimes hard to believe it is happening.

Thank you everyone for your responses. We are going to actively go after the Lyme keeping the Strep in mind, also will do a second titer. She had active strep at the time of the 192 titer, which I was told by someone today is not that high. So maybe Strep is a factor but not the major one.

Psychiatrist was so alarmed about the rapid onset, frequency of thoughts and how to carry them out that she really pushed for Zoloft. That said, Doxy really seemed to make a difference, but things have been so bad that I agreed to Zoloft. We went to Disney two weeks ago and i hugged her and said I hope all your wishes come true and her response was, well, a chilling wish I can't even bring myself to type, my heart actually went cold. We are doing acupressure and working on nutrition too.

Thank you. We have gone to one LLM who got worried about her amox reaction and does not want to restart, gave her Doxy for 5 days which seemed to help tremendously. I know they don't like to give it to kids but i would like to try a second 5 day course. I have an appt with another LLMD for a second opinion who is known to be very agressive, will see what he says about the PANDAS and other treatment. Going to a Lyme/PANDAS Neurologist (he seems to be expert in both) to get her evaluated, just to rule out any other possible issues. Using acupressure (she is scared of the needles but hoping to convert to acupuncture). Something is definitely mis-firing, was an extremely sudden onset and deterioration with no other major triggers. What combo abx treatment were you thinking of?

Previously normal, happy (sigh) DD8 diagnosed with Lyme and 2 co-infections, Anaplasmosis and Echirliosis. Also has super high Myco, 5. Major symptoms leg pain and sudden severe depression. I must have received 30 notifications of Strep in the class this year. Has had strep twice in 2012 so far, the last time strep came on she began expressing frequent suicidal thoughts. On a hunch I said to myself I wonder if has Strep and is it related to this depression and sure enough LLMD looked in her throat and said "That's quite a dramatic presentation of Strep". Titer was high at 192 but from what I have seen of others that does not seem to be off the charts. DD treated with 2 rounds of Amox and recently 5 days of Doxy for Lyme. Was remarkably better on Doxy. Psych extremely concerned, put her on Zoloft. She has obsessions (talks about the same 3 things that upset her over and over and over and over) but does not seem to have rituals or germ aversions etc. (LOL I think I do though) No facial tics, but lots of picking at her skin. Has had a few really paranoid thoughts, world was dangerous and really odd statement that she was afraid of her clothing. At a crossroads trying to figure out is the suicidal stuff Lyme, PANDAS, both? What to treat? Our LLMD refered us to Dr B and seeing his PA in 2 weeks. Have a Neurologist appointment as well with someone who seems Lyme and PANDAS knowledgeable. Also getting a second Lyme opinion and trying to decide if we should go for IV antibiotics. DD was on Augmentin in October for sinus infection, concurrently with inhaled steriods for mild asthma, went into a depression. Saw therapist recovered quickly, tapered off therapy, completly began tanking in Jan/feb around the time of the first Strep and Lyme Dx. (Based on what I now know, can trace Lyme to 2010) Now in a crisis state and put on Zoloft. PANDAS moms can you please tell me, is depression/suicidal ideation part of PANDAS? Appreciate any feedback. Thank you.

I heard that ISDA doctor will also be on. Hoping there is no misinformation given but I guess both sides will be presented. Does anyone know is this filmed live?

Unfortunately my DD was recently diagnosed with Lyme, based on what I know now, test results and what seemed to be a classic Lyme presentation I believe DD has had since spring 2010. She also has mild asthma. At the start of the school year Sept 2010 and 2011, she was put on inhaled steroids for asthma maintenance. Without getting too detailed my happy go lucky child with lots of friends, became incredibly depressed and withdrawn, she began sitting by herself at lunch and even told me "mommy, I don't know what is wrong, it doesn't feel like me inside". When I took her off the inhaled steriods, the depression went away. MD's told me it was impossible that it was linked because inhaled steriods are not supposed to have systemic effects. Psychiatrist we took her to said she was extremely puzzled. Well once we got the Lyme diagnosis and I did some reading, it all finally made sense. Monday morning quarterback, I am convinced there was some type of immuno effect that caused a Lyme flare. I will tell you also though, she took 5 days of prednisone in summer 2011 for a terrible asthma flare up, amd she seemed to recover ok from that. I am not sure that there is any real explanation but somehow I think the burst was ok, but the consistent inhaled steriods caused an issue. Personally I think mom's instinct should be followed, if you feel the steriods will help and can manage the post immune issues. I knew something was seriously wrong with her when I believe she contracted the Lyme, but I trusted the doctor and the test results as they reported to me. How I regret not following my instinct. Good luck

Thank you, I will look into all of these additional options

DD just started second round of amoxicillin at a very high dose. LLMD said that the dose from the first round gave us dose was way too low, she is on about 3x original dose now. I was giving her one packet of Culturelle per day but am wondering, does she need two packets? I am using the Kids version. Waiting for bloodwork back on co-infections. Thanks in advance.

Hi, just heard from someone who effectively treated their Lyme with Samento, after antibiotics. But it is an adult, has any used this on their child? If so, how much did you use? was it in conjucntion with ABX, before or after? and importantly did it help? I am considering this for my 8 year old. Thanks!