Hopeny

Have you asked LLMD about babesia, Lyme co infection? This can cause enlarged spleen, and I think Lyme may do that too. Babesia does not always test positive. My friend's son has enlarged spleen from Babesia. In My DD's case ehrlicia/anaplasmosis threw her Liver enzymes off, resolved with abx treatment. I hope for you it is due to manageable infection and not serious illness but you need to go through all possible causes.

He does igenex but for the Lyme wb you can request stony brook who does a pretty good job on the western blook and takes insurance. That will save you 200. We got part of igenex back from insurance co but not all. It's good advice on the hotel to stay somewhere with a referral

In my never ending googling I have come across some information that NAC can cause bronchiospasm so should be used with caution in pts with asthma. DD has mild asthma and is taking NAC. I have noticed her having an asthma cough after she drinks her supplement smoothie, but I attributed it to the drink being cold. Now I read this abbout NAC and it has me wondering. DD's asthma actually seems generally better, she is also on Enhansa and Quercetin so am thinking those two are probably the reason for improvement. Just wondering if anyone has had experience with NAC and asthama? DD is taking 300 MG/day of pharma NAC. We have consult in 2 weeks and this is on my list but curious what others say. Interestingly as an aside I read that NAC IV is the antidote for Tylenol OD.

Just speak loudly:)

Llm the testing was done prior to starting any supps, dd was only taking vit d, augmentin, biaxin and culturelle at that time. I'll post on the fb page and if I find out something helpful

LLM I was just browsing through DD's labs and I see that she had low homocystein. what would you see as the implication of that in regards to methylation, 677T mutation, etc...?

philamom sorry I do not know much about the above, was wondering for something like you describe would that warrant a visit to a hematologist due to a number of abnormal blood labs? In the Singleton book he mentions elevated sed rate as a sign of babesia, are you dealing with this? And that elevated sed rate is a sign of inflammation, again could be Lyme - but I think its worthwhile to explore if there can be other causes. reactive I believe enlarged spleen can be caused by one of the Lyme co-infections, (I am sure there are numerous other causes, this is just one that I know of) , my friends son had this from Lyme and babesia. It may be something to consider along with testing for all possible causes.

I think you need to taper off psych meds, recommend consulting with psychiatrist who prescribed or whomever is doing the med monitoring.

Thanks everyone. I don't recall that DD ever had strep before everything went downhill last year. Then she had what doctor called "a dramatic presentation of strep" which he said was not even necessary to culture. She said her throat didn't hurt at all. I was a strep carrier when I was young, I was + on almost every strep culture I have taken. My ASO and D-Nase are normal. Given my history, I am wondering if perhaps the stuff is hiding behind her tonsils. Her ASO has not budged in 12 months, despite tons of abx, its mildly elevated (200 with normal range capping out at 150). I'm curious to see where it is now after months of Rifampin. I am going to take her to ENT for a consult and bring her in when sick to check her adenoids. Then go from there. I will definitely insist on IV abx during and after, along with culture, if we go through with it. DD also has mild asthma, so I supposed that might help that too.

Dd3 did an 8 day taper for croup and sinus mess.

I vaguely recall someone using amphotericin, maybe Ko's mom?

nickelmama if funds are really tight now then see what Quest says and maybe your doc can treat with a combo abx. Fortunately my DD tested CDC + on quest with bands 23 and 41, but many do not. If you have someone willing to work with you and there is no other option, Burrascano published guidelines can be helpful. I understand if your doc calls ILADS they will work with them on a protocol. Lymeaid4kids offers some funding to help defer the cost of LLMD visit. The ELISA IMO is a waste of insurance company money and co-pays. From what I understand many Fibromyalgia dx's and arthritis are actually Lyme. My own theory (unscientific) is that kids with chronic Lyme issues had some type of exposure in utero. I suspect doing a lookback that I had Lyme and likely Bart contracted at sleep away, I had many symptoms of it. My theory is somehow this made my kids more vulnerable. combined with an immune problem they have, we find ourselves where we are today. Deer are not the only vector for infected ticks. They are carried by mice, birds, geese etc and they have found Bb in mosquitos although it is not clear if the bite is long enough to infect a human. They live in wood piles, trees, grass and leaves. My older DD never had a known bite or bullseye, although she did present with what I now know are classic Lyme symptoms. Younger DD had something i thought was a mosquito bite, fortunately for us a bullseye was kind enough to appear 30 days after - never saw a tick even with my hyper villegence and it was on her forearm. DD spent time near our library watching the geese, I suspect this is where she got it. We live 30 minutes outside of NYC in the suburbs. I know almost no one local whose kids have Lyme, actually only one other mother and her kids were infected in Maine at sleep away camp. I hope you are able to find the answers that you need.

I had non PANDAS DD3 at ENT today and I disucssed PANDAS with him (BTW a WONDERFUL ENT if anyone in Westchester, NY area needs one) , out of curiosity I asked if he had heard of it and he told me he has done 20-25 T&A's specifically for it, and all but a few were completely effective in erradicating PANDAS thus far. He said Strep can live in other places in some cases but less likely. So it got me thinking, is this something that would be a good idea? DD9 PANDAS Lyme is doing ok but on abx/supps - would be it be a good preventative measure to do T&A?

Hi, in the Lyme world the ELISA test in considered irrelevant. I would highly recommend a book called Cure Unknown by Pamela Weintraub which will help you understand in more depth about the testing, how it was developed by "doctors" (i use the term lightly) with conflicts of interest, and how Lyme can go undiagnosed for years. There is also good information on ILADS.org. A western blot is necessary to determine exposure to Bb (lyme). A Lyme Literate Doctor uses the western blot, combined with clinical symptoms, to make a diagnosis. Sometimes a + diagnosis of Lyme can be made solely on clinical symptoms. Quest tests only for a few strains of Bb, Igenex tests for hundred. I would definitely recommend Igenex even though it may be a bit pricey. The following WB bands are considered relevant or indicative of exposure and/or active infection, if they come up Indterminate or positive, bands 18, 23, 30, 31, 34, 39, 83 and 93. Other bands that the CDC consideres relevant, such as 28, cross react and do not provide useful information on Bb exposure. There is a new blood culture test from advanced labs that is supposed to identify BB spirochetes in the blood. It runs around $500 and you must be off abx for 4 weeks prior. Igenex has some other culture tests that may be helpful. More devestating than Bb sometimes are the Lyme co infections, which can be tested through Igenex as well or to save some money you could give Quest a shot. Lyme is extremely complex and frustrating to deal with, I am happy to speak with you by phone if it would be helpful. Just PM me and I will send you my number. My DD9 has chronic Lyme and my 3 yo has an active infection from the summer. We are also dealing with PANDAS. No disrespect to Dr T, but he is a neurologist and would not be my choice for Lyme. Lyme is awful but if you find this is the problem you are on your way to recovery.

Can an ent see the adenoids or do they need a type of scan to confirm an issue?

My LLMD clued me into using drugs.com to check interactions, we don't use Luvox but I have seen people on this board do so am posting this. I was checking Melatonin, and Luvox was noted as one to avoid. The others to avoid I did not recognize: GENERALLY AVOID: The concomitant administration of fluvoxamine may increase the serum concentration of melatonin. The mechanism is inhibition of CYP450 1A2 and 2C19-mediated hepatic metabolism. Coadministration increased melatonin AUC by 17-fold and maximum plasma concentration (Cmax) by 12-fold

I'm not supposed to post any fundraising on the board but if you "like" children's Lyme network fan page on Facebook she posts updates on how things are going. I just hope he is successful and can take on a partner. My 3 yo has active infection from a bite this summer, there is no one else who can treat a kid that age within hundreds/thousands of miles

I completely agree. I think Dr. B. is an amazing doctor, I was sort of worried from the posting that perhaps he is not treating PANDAS anymore but that would be hard to imagine. He has never brought up IVIG for my DD9, although our LLMD threw it out there. Dr. B. brought my daughter back. I also bring my 3 yo to him as an immunologist because she has an immune problem and recent Lyme too. His knowledge and understanding of immune processes and antibiotics is extensive and I can't imagine not having him on our team.

I saw this on lymenet so cutting and pasting: http://www.heartfixer.com/AMRI-Nutrigenomics.htm (scroll down to read about the different SNPs) http://geneticgenie.org/ http://www.snpedia.com/index.php?title=Promethease

Hi yes he has confirmed he is staying open. Hopefully he will win his case.

Me too please, Dr. B has been amazing for both my kids.

My DD's have also had chronic sinus issues. One of DD's doctors told me that I think more than 2 sinus infections a year is abnormal and should have adenoids examined. I have not done anything about this yet for older DD because we have been embroiled in Lyme/PANS and since she is on constant abx has been better. I am taking DD3 to ENT to discuss adenoids and will post if I learn something useful. BTW I think the Doxy suspension was more expensive then capsules. My former au pair had either staph or MRSA (I wanted to throttle her for letting it go but that's another story) and they gave her 30 days of Doxy, it was much less than suspension like $40/$50 at CVS without insurance. Yes, I did a 60 day run on doxy capsules a while back and had no problem with coverage. My daughter no longer gets sinus infections since receiving IVIG. When she was a toddler she would get them every 6 weeks. Cat scans showed chronic sinusitis. Wow that's interesting, we are not considering IVIG at this stage

First hugs to you, I know from personal experience it is so awful watching a child that young suffering and feeling so helpless. My daughter suddenly became suicidal at age 8 and there are just no words to describe how awful it was. It's hard to even think about but she prayed every night to die. But she is better and your DD will get better. Amox helped initially (DD's first Dx was Lyme, then PANDAS)and then actually started making my DD much much worse, at one point she told me she was afraid her clothes would hurt her. We did 5 days of Doxy that brought her back from the brink and then combo of Augmentin/Biaxin which was INCREDIBLY effective. Your ped may be reluctant to do the combo but it worked. Even though Augmentin contains Amox, and I was sceptical/scared to try it, it really worked. Biaxin has anti imflammatory activity and it was like a miracle for us. I think I would stop the multivitamin, I have had times when this made DD worse. Do you have a PANDAS doc on board?

I would watch them for any behavior change and if already on abx I would not worry as much. Though I would probably get them swabbed a few days after exposure just to be super safe.

My DD's have also had chronic sinus issues. One of DD's doctors told me that I think more than 2 sinus infections a year is abnormal and should have adenoids examined. I have not done anything about this yet for older DD because we have been embroiled in Lyme/PANS and since she is on constant abx has been better. I am taking DD3 to ENT to discuss adenoids and will post if I learn something useful. BTW I think the Doxy suspension was more expensive then capsules. My former au pair had either staph or MRSA (I wanted to throttle her for letting it go but that's another story) and they gave her 30 days of Doxy, it was much less than suspension like $40/$50 at CVS without insurance.