Hopeny

If there are issues at school IMO it is warranted to switch schools. My DDs school had some minor bullying issues, in her right frame of mind she probably could have managed it but it just became a train wreck. I literally decided during the last week of school to move her. She is as sensitive as an open wound and everything hurts her deeply, there is a lot of mental baggage at her old school. The day we signed her up for private school it was like a huge weight lifted from my shoulders, and hers. We have had to make major changes and borrow money to make it work financially but I am hopeful that taking this step will help her continue to heal, along with everything else we are doing.

could you please send me info on the SUNY study?

They say they send the labs to Igenex which is one of the two labs in the U.S. that LLMD's use - (the other is Stonybrook but they don't test coinfections). I have not heard great things about the urine test though, from what I recall it was a good idea but has not been fully vetted. Lyme testing is very complex and as I understand most labs don't test as many strains as the above two, hence the variance in results. This website seems a bit concerning from what I read that they don't seem to use antibiotics. Every integrative doctor I have read about says you need antibiotics in addition to the herbals

Minimaxwell you are so doing the right thing. Props to you for winning with the PED!!! One small thing if your son gets a headache it needs to be evaluated, Doxy can (rarely) elevate intracranial pressure.

Well, I kind of agree that the peds are too quick to call everything a virus, but when I go to a local after hours clinic (which is usually where I end up because my kids never get sick during office hours). All they do is a quick finger prick and test the WBC count. This easily tells them if it is viral or bacterial. Then if it is bacterial, they usually prescribe some general abx. And send us in our way. That is almost as frusterating because although you get abx. They never test further to say what it is you have. Could be strep, bronchitis, ear infection, etc..... So then when you see another dr. And they ask what you had or have all you can say is "well all I know is it is bacterial". So anyway I know you can determine if abx. Are needed, but you also kind of want to know what it is you are treating. It is all very frusterating. interetsing about the finger stick, I am going to ask for this next time!

me too, I sort of started not having any expectations, so everything positive is a huge gain and anything negative does not cause that terrible feeling. I have done a complete 180 in my thinking. I have accepted that our lives are now different. My priority is the present so my DD can have a future. It is so so very hard

Just to offer another view of the single dose, there is a lot of debate around the single dose within the Lyme community. Too tired to search for it but I have read a number of strong arguments/evidence against the single dose theory which I believe was put forth by the same folks that say chronic Lyme does not exist. In my nephew's case, a short course of antibiotics was not enough, it was started within 48 hours. Also the tick was attached under 12 hours, they say it takes 24 to transmit - this was just not the case for us. Just our experience. When we saw our LLMD I asked him about a new bite and he said 30-60 days of abx. Minimaxwell if you google "treatthebite" there is more info. I truly hope that the tick was not carrying Bb or any of the other 5 co-infections, it is sheer ###### watching your child suffer from Lyme.

Thank you, someone else just sent me his name too - so he definitely seems like the right person. I have also considered him for my DD who has Lyme etc., we have been heavy on abx and I want to start adding naturals in too. A thought ocurred to me today, after learning so much these past months - my kids get illness after illness and the pediatricians told me over and over again "It's just a virus" even though they have no clinical way of differntiating between a virus and bacterial illness. Even this winter when my two year old had double pneumonia, they were reulctant to give me a prescription. So my thought was, perhaps the underuse of antibiotics is a contributing factor to these epidemics...letting these illnesses run wild where as before pediatricians would prescribe antibiotis more frequently. I wonder.

My LLMD told me and gave me an article about 93, in any form IND or +, is hugely indicitive of Lyme, more than the other bands. He said he normally will not treat on one IGG band alone, but with 93 it is a clear indication to treat.

I went to see a friend today and found out her 2 y.o. regressed/lost most of his language and also is spinning/watching wheels spin. He is 2 and has less than 10 words, he only says Mama when he gets hurt, he said it for the first time at 4 months. He will make eye contact and does engage socially. He does show some signs of OCD too, lining things up etc. I know he has been sick a number of times, lots of fevers, rashes etc. I also noticed that he grunts. He seems to understand everything but won't talk. She is very open to seeing Dr. B and also a DAN. Actually she was thrilled to hear that this specialty existed. I knew about DANS from this board thankfully, but how do you find one? We are in the Westchester NY area so white plains, yonkers, new rochelle, scarsdale etc are good. CT and NYC are also possible. Thanks in advance!

Spirochetes are awfully hard to get rid off. Bearing in mind I am 110% opinionated from watching my 8 year old suffer through months of Lyme ######, i cannot think of one good reason not to start antibiotics. Will share briefly my nephew was bitten about 6 weeks ago, tick was not engorged and attached <12 hours. i freaked out and insisted he start abx, my sisters ped put him on 10 days for a reason i dont understand instead of 28 days, 3 days after stopping my nephew woke up almost paralyzed in his legs from pain. started abx again, pain went away. amox dose is 50 mg/kg evry 8 hours for at least 28 days. Doxy is 100 to 200 mg bid.

They say 24 hours on abx but "they" also say lots of things that don't turn out to be correct as we have found out, but is the whole family (parents) on abx? Not sure how long Strep lives on surfaces?. I find it impossible to avoid, as it is everywhere, but in a known situation like this where you can control it maybe better to reschedule? Would you really enjoy yourself anyway, worrying about it?

My daughter had a terrible school year this year in second grade, emotionally. During the last week I decided to look at private schools. I was able to find a Montessori Elementary - who even knew these things existed! I am not a Montessori fan generally but when the director told me some parents described the school as "home schooling on steroids", I was sold. Just throwing this out there. You need to take care of yourself too and homeschooling is a huge commitment. I also recall that many preschools offered an extra year for Kindergarten transition, maybe this is an option for you. The germ thing is an issue, but I think it can be managed with hygenie habits and medication. Before the Lyme dx my daughter was put on phropylactic inhaled steriods for asthma, so I think its reasonable to do the same for Lyme/PANS. Good luck I know how difficult it is.

Thanks both, these coinfections seem uncommon as I am finding hardly any info. DD's IGG was 1:64 range <1:64 so not terribly high. Her erlichia and anaplasmosis were right at the cutoff range by Quest but now back to normal. She has been on anitibiotics for much of this year. She did not ever have the RMSF rash I have seen pics of on hands and feet, but I do recall when she had the initial what we now know was Lyme presentation in 2010 (missed dx by pediatrician and me ) she did have what I thought was an excema outbreak. She is back on Doxy now. I am hoping these next 12 months can just be a healing time for her. She has low Vit D and off liver enzymes too.

When you wrote clean as a whistle for Lyme, can you specify what testing was done (ELISA or WB) and by which labs? And if WB, if any bands IGG or IGM came back positive? What you are descibing are pretty specific Lyme symptoms too.

Hi. My DD8 has both PANS , Lyme, very high Myco, hetero MTHFR 677T & elevated but not very high ASO. (lyme induced PANS?? I saw there is a study on this). BTW she has had a lot of pain on the soles of her feet and major psych symptoms however Bartonella negative by Quest twice and negative by advanced Igenex screening, would be good to test so you know for certain. (she has the other family of co infections, ehrlichia, anaplasmosis, rocky mountain spotted fever) I have been struggling with the same questions, what to treat... however she does not have tics or chorea, just horrendous obsessions with suicide. We ended up doiing 60 days of Augmentin/Biaxin - we saw tremendous, fast improvement in the PANS/OCD symptoms, and last week after six months of not being able to sit on the floor from pain her leg pain/arthritis has finally subsided. We we now doing 30 days of Doxy and will go from there. After seeing the OCD improvement, I am convinced that this is very relevant for her and have IVIG on my radar. In our case, it took 60 days of strong abx treatment to start to make some headway. Are the Lyme bands IGG or IGM? I am wondering if you could possibly do 60 days of the abx and then do IVIG? Just to clear things out to have a good start with IVIG?

We just got some testing back from our first LLMD visit and DD8 turns out positive for RMSF in addition to Lyme. My daughter's case is a pediatrician missed diagnosis, and working back looking at previous bloodwork and symptoms we realize she sadly went 2+ years untreated. During our first round of in depth Lyme testing this year she tested low+ for Ehrilicia and Anaplasmosis, and very high for Mycoplasma. She did 5 days of Doxy and now Anaplasmosis and Ehrilicia tests are now negative. LLMD ran RMSF and it came back IGG positive . He did tell me that Ehrlicia and RMSF sometimes cross react so it could be Ehrlicia causing the RMSF+. Thank G-d she never had the rash on her palms however she was extremely sick when we think she contracted it. Fortunately Babesia/Bartonella are negative by Quest, Igenex and Sonoma County - so per LLMD while not 100% ruled out, it seems likely that we are not battling this mountain too. She has been on Augmentin/Biaxin and is now switching to Doxy. We have not added naturals yet to the mix but plan to. She has one copy of MTHFR 677T, Vitamin D deficiency and some liver function numbers are off. I have not seen many posts around these infections so just wanted to ask if anyone has experience with these, what the treatment has been like and recovery? As background, DD has had a variety of physical symptoms, leg, knee and hip pain, headaches, dizziness, brain fog, stomach pain, seeing colors, and extreme fatigue. She has had lots of psychiatric issues all with sudden onset, went from a happy, friendly popular kid to a withdrawn, suicidal insecure girl almost overnight. We have been working on some PANS aspects of her illness (Lyme or Mycoplasma induced with Strep exacerbation), and have seen improvments in her OCD symptoms. Thank you in advance.

Thanks, he is only 5 so they don't like to use Doxy. My DD saw our LLMD today and I asked him what he thinks for a new bite and he said 30-60 days of abx.

In our family Dr B tested us for Strep and Myco, not sure for other families what they look for.

We saw improvement very rapidly on Augmentin/Biaxin combo, within a few days, although DD had a few bad days when she started including a mild hallucination. Dr. B's office told me they usually see the most progress after six weeks. Personally I think Biaxin made the difference, I stopped it for 12 hours and DD's suicidal ideations returned that night, I started her right back and they were gone in a couple of days. We also saw a quick improvement on 5 days of Doxy, and will restart that for Lyme again shortly. My DD has Lyme (2 co infections), high Myco, hetero MTHFR677T, and PANS - strep seems to be an instigator for DD but not terribly elevated, and her ASO has come down to the top of normal. Her PANS appears to be Myco/Lyme induced. I will tell you, the OCD symptoms have faded but there is what I am calling collateral damage. DD is not the same, we have withdrawn her from school and have found a private school for her - starting CBT. Maybe Biaxin would be helpful for you to add to the mix. Good luck.

My sister (although I did ask her if she really thought it was a good idea to go originally given the current tick overflow) took her kids camping and was doing constant tick checks. She pulled a tick off my 5 y.o. nephew's trunk, she said it had been 12 hours since the previous tick check. I suggested she ask her pediatrician for a 28 course of 900mg amox to start off. He gave him 10 days at 800mg. A few days after he finshed the abx, my nephew became almost paralyzed, unable to move his legs. (yes folks, he got sick from a 12 hour attachment and not the 24-36 "required" by IDSA to transmit Lyme) Pediatrican agreed to put him back on Amox 900MG for 30 days. He is taking Amox in two daily doses not three, I am not sure if this makes a difference. Is the 30 day course really enough to cure this? and what about the co-infections? but if you give the Amox early, does it preclude the co-infections? Hold onto your hats, the ELISA given a few days after the bite came back negative, but his CRP was elevated. She did not save the tick. Thanks in advance

OMG this is almost the exact depiction of one of DD's first doctor visits back in Feb with a Rheumatologist who "specializes in Lyme" - just about word for word. Is there a script they give out in Medical school?

Love those days! enjoy and I hope tomorrow is perfect!

I just want to mention that I really like Dr B and his office. He came into see my DD even though she had an appt with the PA because of a few things the PA was concerned about - we actually went initially as sort of a check in the box (my DD has Lyme) but through the treatment regimine with him where I have seen a number of her symptoms alleviated. I have come to realize that she does have a PANDAS component too. He was really good with my DD who was anxious and frankly not behaving well at all, she asked him about a pen he had and he gave it to her. I am still figuring things out between Lyme and PANDAS but continue to see him and our LLMD. I am pretty sure he was back from vacation last Thursday because he was out when we saw the PA recently and I recall that is what she said. Good luck with the plane ride - the more apps the merrier!

Our LLMD said to give probiotics 2 hours after abx, he wants DD to take 20BN culturelle cells twice a day. I mentioned that this is what we were doing to Dr. B's PA and she agreed with this. (that's two adult tablets twice a day emptied into liquid)/ I mix in Florastor when she gets a stomachache beccuase LLMD gave me a handout that said that Florastor is best against C-Difficile. DD hates the taste of it so I don't use it all the time.