Iowadawn

Hi to all- We will soon be adding the drug Mepron 1 tsp 2x a day to our current doses of zith & doxycycline. What might we expect with this? Is this drug know to produce herxing? What about taste? Bleck, it would look! If really nasty--ideas to get this stuff down the hatch would be appreciated!! The Doxy did produce a herxheimer reaction. I am anxiously waiting for my results which I know are in the hands of the doc by now. I have bugged them twice!! Errr! Any comments on Mepron would be truly appreciated! Dawn

mbruin- I could have written this myself about our situation. Change the age to about 2 and now an 11 yo son!! OH my stars. Down to the lyme dx and triggers!!! All I can offer is prayers. We am looking for something effective. If he's operating on all cylinders techniques work; if not oh, dear. Feel free to email me, if nothing else, for an empathetic ear. I am reading the replies right along with you!! Dawn

We have had the Cunningham test done twice. Both times the Cam was 184% for our DS. He was PANDAS and was recently dx'd with lyme & co-infections babesia & bartonella. Dawn

The IGeneX testing would be worth a shot. My PANDAS ds11 came back positive for lyme, Babesia, Bartonella. We have been treating lyme halfway as we have been treating PANDAS for 2 years with really no lasting success. Some symptoms have gone & stayed away, but the anxiety, aggressive/volitile behavior hadn't. The lyme doc said they are finding more & more autistic kids turning up positive for lyme. The thinking is they get it in utero and this compromises their very immature immune system, setting the stage for hypersensitivities to everything under the sun and then the autistic symptoms set in. My WB will be back in about a week. Hope it lights up like a C'mas tree. Strange, but that is what I hope. Dawn

SF Mom- I've looked at a picture of Bentonite Clay--How in the world do you get a CUP of that down the hatch?? Aaaaa---what's it taste like Fruit Loops??!! I have this image of it turning into a giant clump of sticky clay in your insides. A CUP!! I am new to this detox & need to explore our options---that my boy will take. Just had to give you a little cr*p! Oh--that's what the stuff is suppose to help you do!! Heeehe Dawn PS: I really do want to know!!

My understanding is that Dr. B was there, but had to sit in the corner & be quiet!!

From what I understand, it is becoming clearer that the CaM elevation is not PANDAS specific. Everyone needs to remember that what she is doing is research--sometimes research can take a turn, or a jog. Maybe these PANDAS/lyme kids hold a unique clue as to what is going on. She is looking into the lyme/CaM connection--my understanding. What will be interesting is the degree of CaM elevation in Lyme vs PANDAS serum. Dawn

I will be very interested to hear what's up in Lyme-land since our recent dx. Can't go, though. I sent her and Kathy Alverez an email with an FYI, Evan has lyme, thought you'd like to know since you have tested his blood 2x-184% CaM and anti-lyso elevated. Said I'd be happy to email additional info if it would be helpful. I have always heard back from them the few times I have contacted them. Just thought this is strange--any thoughts why this might be. research reasons? I know there is a real concern of the recent lyme uptick muddying the PANDAS water and possibly derailing research. Just wonder if anyone else has had this same thing happen since being dx'd with lyme after a PANDAS dx. Dr. K did not respond, either. (He has treated Evan). Dawn

Michael- So how are you doing? I have missed posts from you telling what's up. You saw Dr.K at one time? How did you come to checking for lyme? Have you shared this dx with Dr.K. Our son was PANDAS and just last week got a lyme DX with Babesia & Bartonella. I told Dr. K. No response. How are you doing? dawn

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him. The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn

Well--My son has PANDAS and Lyme, & Babesia, Bartonella. We were told we have essentially been treating the Lyme halfway for the past two years. The abx & IVIG's have all been beneficial, just not enough. The source: probably me. I'll find out in 3 weeks. This doc refers to dr. K and Dr. K refers to him. That made me feel good. He is involved with Dr. Cunningham's work with Lyme. He has studied some with Dr. Jones. He had a band 31 show up--Bb specific & shows that he has had it over 1 year. Babesia FISH was positive and IgM of Bartonella. His clinical picture fit. Dawn

Good Morning! Well, this appt finally came. We are off to an ILADS doc today. Say a prayer. I go with an open mind, though I am skeptical. We have our IGeneX tests in hand. The Babesia FISH was positive. Dukes mixture on Bb and Bartonella IgM titer a little outside normal level. Off we go. I am taking my sister for a second set of ears since my husband is unable to come along. Later. Dawn

I'm not a huggy person but I wish you were here so we could give each other a huge hug, and long cry, and eat some dark choc & washed down with a Diet Coke. We feel as if we are losing our son. We have had 2 IVIG's. The post IVIG times played out ALOT like your son's--down to the "mystery illness" for several days. We are doubling our efforts to get to rule out any biological bases for his behavior, b/c he isn't going to live here to a much older age b/c our 11 1/2 yo old son is getting too dangerous. The anxiety & inflexibility, rages, tantrumming, violent behavior--we've heard the "Kill me" plea. I usually do not have nightmares, but I woke up with Evan banging a board along our heads in my dream. Not a stretch. We are off to a lyme doc tomorrow b/c of the IGeneX results. The positive Babesia FISH test is the one that really makes me go "Hmmmm". I don't even know what I think of this appt. Just kind of feel numb. Maybe there is nothing else to be done. We are also making an appt w/Dr. B --no offense to Dr. K. Dr. B is more skilled & methodic abut his look at the immune system. We all go back on abx today--still evidence of strep based on ASO/ADB results. My oldest girl will take Clindamycin. I am feeling that we are running out of time and we will end up chasing our tails. For now I will press on--one day at a time. Cling to my faith, knowing that God is not going to leave us hanging. PM me if you want! Dawn

laure- We can certainly empathize w/ your situation. And, unfortunately I have no new ideas that you probably haven't already tried. "When you do this...You can do this favorite activity" Charts-NOT! Stand on your head! Let's brush our teeth together, Susie-Q. Not. The hygiene stuff happens soooooo much more easily when they are not in a downswing. One idea that has worked-on occasion-if my boy happens to be staying at my sister's for a day or short visit it has worked to get him in the shower/brush teeth extra good w/ the cousins over there. There are no great answers. Hopefully, your child has a mouth with baby teeth. My boy is doing better (not great) now with permanent teeth in. Wish I could be of better help. Dawn

We had a $1400 IGeneX bill. We got a check back for $600. BCBS out of network.

I seriously doubt he will order these for you. I emailed Dr. K re our son's IGeneX results and briefly stated some of the symptoms that have plaqued him and why we were exploring this route. One test, Babesia FISH test (the parasite is seen in red blood cells) was positive. Bartonella & Bb antibodies showed up. Our son has had 2 IVIG's w/ him. His response did not make me think that IGeneX testing was something he would order. I'll leave it at that. Your best bet is to get your local doc order it. Just my experience. Dawn

Just a heads-up so you are not surprised. We paid IGenex $1450. IGenex is out of Network. We had met our stupid $3000 deductible, so that didn't matter. What really can get flukey is when you go over the state lines with BCBS (& probably other companies). You then are in the NATIONAL BCBS program and whatever the rules are for coverage in that state are the ones that apply. So, in our case BCBS in CA said they would normally allow $598 for these tests. So Iowa BCBS allowed $598. NOW this is the point the 70/30 split comes in for going out of network. We will be getting a check for a whopping $420. Better than nothing, but nothing to write home to Grandma about! Dawn

Thanks for sharing!! Great info. Dawn

The nightsweating thing that is suppose to be so indicative of babesia is not a symptom that I can recall being an issue. Now he gets overheated very easily and whooped from the heat--just figuring this is from the meds he's on. Dawn

I, too, have heard about the shooting pain & lyme/tick-borne infection correlation. Also, the air hunger symptom. We have had these types of symptoms in our son. "It feels like I am breathing thru a straw. It feels like have something on my chest. It's hard to get enough air." These are some comments our PANDAS son has made. He has had shooting/stabbing pain here there & everywhere. Right now the complaint is in the VERY low abdominal (bladder) area. A horizontal shooting/stabbing pain. After Dr. K put him on Biaxin post IVIG because of mycoplasma these complaints have not been as frequent or intense. The irritability/mood lability/raging is a problem. Since then we have had IGeneX tests. We had a mixture of lyme results, the Babesia FISH was positive,Bartonnella IgM was positive (not extremely high). Do you know, Lyme Mom, does that positive FISH pretty much guarantee a dx of Babesiosis since you are literally seeing the parasite? We did not take him off the abx, so all the PCR tests are worthless We see the LLMD Sept 22. Dawn

Oh, I remember the other thing we mentioned in our "loaded for Bear" letter to BCBS. Fine, you don't like this trx or think it will work, please tell us what trx you would recommend that will b/c our doctor wants to know!! (He said to put that in!) D

I think Dr. K said it is his quick psychological assessment. Our 10yo son was cowarding & whining in my husband's arm after he got started. He was not a happy camper with Dr. K when he was through, either. Since that time he gives it right back to him when our boy has seen him or had the second IVIG.

We have always been successful when we have had denial issues (for about anything, or if BCBS of Iowa was giving us extra grief) to contact the benefits person at my husband's work, who would get the BCBS rep for his employer to rattle some cages. We armed them with info and we got results lickety-split. We crafted a letter that the rep used and highlighted the need for IVIG, how they didn't have any trouble covering drugs that were not FDA approved for 10 yo kids (One Ahlzeimer, one Parkinson's, one other not cleared for pediatric use) and how these haven't done much. And how one drug was making him ill and we had to remove him from it. They didn't have any problem paying for multiple times in the behavioral unit at nearly 15k a pop and that wasn't really helping long term. We had had one infusion and it did show positive results, and how he had returned to school at one point, until he was hit with strep in the family and spiraled. How he had missed over half the school year. That UHC was covering it and that Canada recognized it's use. And how the NIMH recognized the trx protocol the doc was using. I don't know your employer situation. There should be a "cage rattler" (ins. rep) the benefit's person knows about that could go to bat for you. We were technically out of appeals & appeals of denials and we got results we never would have gotten had we fought on our own. Just some ideas. Dawn

The way I learned the "Rabbit, Rabbit" thing in COLLEGE --our RA taught us was with a bit more vim & vigor. You are to hop out of bed, and first thing, hopping on your right foot in a clock-wise direction, exclaim: "Happy Rabbit,Rabbit Day!! Happy Rabbit,Rabbit Day!! Happy Rabbit, Rabbit Day!!!" Now--have no fear if you happen to forget on the first of the month, but remember on the second day. Hop on your left foot in a counter-clockwise direction exclaiming:"Happy TIBBAR, TIBBAR Day!! Happy Tibbar, Tibbar Day!! Happy Tibbar Tibbar Day!!" and all will be well. Unfortunately, at my age neither is a very wise choice-I'm libel to just wet my pants!! I wonder if we applied the same principle to PANDAS-saying it bw's--SADNAP 3x's that it would go away! Dawn