tpotter

I was telling my PCP the other day about all my family's problems, the fact that I was just dx with MycoP (IgM 1750, IgG 250), and both my boys and DH have tested positive for IgG (180 - 250.) I told her about our forum (she's VERY understanding of the whole thing), and that I wanted a lyme test (I'm going to start with a full Western Blot...the insurance paid one.) I then told her about going to an LLMD, and she started on a rampage (not a bad one,) because she "hates to see her patients taken to the laundry." She said that before she was diagnosed with RA, she also went the lyme route, and there is a dr. in our area (on the Ilads list) who had her do a bunch of very expensive tests, then go to a specific dr., who diagnosed her (inaccurately) with definite Lyme, and treated her as such. The more she told me, the more I realized that the person she was talking about was the person down the street from my house, who I had also called (but hadn't gone to, yet.) She said you have to be very, very careful, and just because they are Ilads drs, doesn't mean they all know what they are talking about. She said that many of them are family practice drs, who have decided that they have this specialty in Lyme. When I told her that I had spoken to a Lyme specialist recommended by another mom on the forum, and he is out of a major university (I told her which,) she said that that's probably fine. She doesn't deny that there are definitely people with Lyme, but she also wants to make sure her patients don't end up paying a ton of money, and then still end up with an incorrect dx. So, all I'm saying is to be careful. I really think that many of us, and our kids may have Lyme, but many don't, and maybe whatever is wrong with our families is mimicking lyme. But I also think that it may be going a little overboard, and we need to be careful as we try to find answers.

I've heard that a lot. And, although azithromycin and biaxin are the same family of drugs, they may not cause the same reactions in people. Case in point...both my boys have had hives from biaxin, but are able to safely take azith. Check with your dr. I am on azith for mycoP, and for the last 3 years (the whole time I've probably had it off and on, azith was absolutely the only thing that was working (but that's because my dr. was trying the wrong kinds of abx. I've also heard that doxycycline is a very good one also. Now, I just need to get both my boys and my DH (who just tested positive for IgG also) treated, because I'm positive it's going around the house over and over again.

We've found 5-HTP to help my boys sleep (I played with the dosage, and found that 3 at dinner help my DS14, and 4 at dinner help my DS17). Also, I stumbled over this next one, and I swear it works on my son, and several others have said it ended up helping their children. Peanuts (or peanut butter.) When my son was raging, I wanted to find something high in protein and high in fat that wasn't meat (he doesn't like meat.) What did I have in the house...peanut butter. Now, before anyone tries to claim that it is placebo (who really cares anyway...it works), he HATES peanut butter! But, 1 T (sometimes 2 -3 if the rage is really bad, stops him, literally in minutes. I have told many doctors, and of course most don't believe. But, Dr. K. agreed with me that it was probably because it's high in tryptophan and high in fat (which takes it straight to the brain. Anyway, if you try it and it works, please let me know (you can PM me.) We still carry peanuts everywhere we go, and when the mood starts to deteriorate...out come the peanuts (now we use gorp...peanuts, raisins and PEANUT M&M's, but he's very limited on the number of M&M's, because I don't want him having so much sugar. For what it's worth, it does not usually help my DS17, so something different is going on there.

Your PM seems to be full.

Absolutely should do IgM. IgM shows active infection. IgG shows that you have been exposed to MycoP, but doesn't tell you when, or even if it is current or not. I have very high IgM (1750...normal is below 800), and very high IgG (250, normal is below .80). Both my boys and my DH also have high IgG. I highly suspect that we have been giving it back and forth. I am definitely symptomatic...uncontrolled asthma for 2-3 years, and whenever it flares even further, I have always found that ONLY azith works for it (I suspect I have had MycoP a very long time, but controlled it, unknowingly.) I also believe that unless we get the "boys" (including my DH) treated, we are going to continue to go back and forth (both my DS have PANDAS.) So far, no one is treating them, but I need to talk to Dr. B. when he returns from vacation. All our efforts have been going to trying to get IVIG approved, and we have 2nd level of appeal on Tuesday (but I'll be very surprised if it's approved, only because the insurance company is being a real stickpot!) Anyone have any ideas or information about my theory above (that we are all infecting each other over and over again?) I work with very young children, and just gave up one case, because the baby is at high risk, has been hospitalized repeatedly, and I don't want to risk getting her sicker, even though I have now been on abx for a little over 1 month (tx is getting ready to end, and I know that it's not gone...I'm still feeling stuff there, still coughing up small amounts of salty tasting sputum, etc.) I'm going to talk to Dr. B. about that, too.

Luckily, she was in-network for us, but I made 3 trips to her office (the last with my husband, at her suggestion) for her to tell us how dangerous PEX could be (she was doing a research study using PEX), and wanted to be certain we completely understood the risks. We told her that we completely understood, but that our son was so sick, he virtually had no life left, and we needed to help him in whatever way we could. Then we heard nothing. I kept pushing, and all I got was a report (that I had to correct several pieces of info), and it suggested that I give him SSRI's, behavior modification (the child was physically collapsing, blacking out, having chorea, besides also having tics and OCD and severe anxiety), and then wrote that it "might" benefit from PEX. Then there was no more word from her! I was furious that I had wasted 2 months on her at my son's most critical time (he wasn't even able to attend school, and he was starting to hallucinate!) Luckily, I found Diana P. at that time, and found out about Dr. K and Dr. L, because I hate to think where we would be today (including finding out that my other's son's symptoms were also PANDAS. But, at this point in time, I really would stick with the top docs. There is one more option, but please PM me, and I'll give you that name (not through CHOP, though.)

I also agree that EH is not what you should be having. You need to fight for your child to be classified as OHI (Other Health Impaired) due to his autoimmune/neurological dx. This is medical. We just went through something very similar (only with and older child.) I brought in documentation from his neurologist and immunologist, and he was classified OHI (primary) and ED (which is your EH...secondary.) This way they know that there are behavioral concerns, but we were able to argue successfully that he would not benefit from an ED/EH classroom setting. You have to be strong and fight the fight. Do not sign anything you do not completely agree with, and/or do not 100% understand, and observe any classroom that they are going to consider. If you still don't feel that they are listening to you, google "educational advocates" for your state (if you're in southeast PA (near Philly), PM me, and I will send you some names). They listen a whole lot better when you have an advocate with you. Good luck.

Only one we found at CHOP who's even slightly open to PANDAS is Elias in Psychiatry. although another mom just found the director of rheumatology to be open to it. But, he suggested that she go to Yale, and indicated that she shouldn't waste her time at CHOP (which is what many of us around her have also found.) To give you an idea, when my son was hospitalized at CHOP for 4 days with 104 fever, postivie rapid strep, nystagmus, chorea, tics, and already diagnosed with PANDAS, the attending neurologist informed me that PANDAS was: "voodoo."

When one of my 2 kids goes into a rage, 1 - 3 T of peanutbutter or 1 -3 small handfuls (each enough to easily get in their mouths) of peanuts works within minutes. I suspect it is because peanuts are full of tryptophan and fat, the latter of which gets the tryptophan straight to their brains. Dr. K. agreed that it was certainly a good possibility. We figured this out purely by chance, and others have tried it...it has helped others, too. BTW...it doesn't work for my other son, which means the rages are caused by 2 different things, although both do have PANDAS.

What about a cruise for us? There really are some very inexpensive cruises. I'm in PA, but willing to travel (got some free air miles.)

Yes. Check the PANDAS forum for the thread about trichitillomania. There definitely appears to be a link.

I just saw my name mentioned. 2 people just PM'd me saying to see the LLMD, and that it does need to be long term. I'll also talk to Dr. B. (he's my immunologist, but I don't want another thread to start like the Dr. J one earlier in the week :-), so I didn't mention his name. They both agreed it was probably herxing for me. My IgM is over 1100, and my boys' IgG is about 1.8 (my 17 yo), and 2.8 for my 14 yo. My 14 yo has always been sicker, is more affected in school, etc., but part of that is because my 17 yo also has Asperger's and had support from the minute we moved to PA, whereas my 14 yo, who was supposed to get support, only had the district fight us for 3 years, and that made him even worse. I do have a call in to an LLMD for the boys, and I think I'll add me on to that (he doesn't take everyone, so my fingers are crossed that he'll take my family. Also, my DH is going to ask his dr. to test him today for MycoP, because the rest of the family has it. BTW, what is the Turkish study? The only one I know about has to do with doing PEX on older adolescent/young adults. I'd like to read it. Also, I keep you in my prayers, that both you and your child get through this. Trudy

I soooo like your post. I will definitely talk to the doc (it's Dr. B., so I think he'll be open to it all.) But, I also have a call in to an LLMD (highly recommended by someone on the forum, and I have checked out his credentials) for my kids, and I'll talk to him about me, too. I was definitely bitten by tics when I was a child, because I always went camping. I remember one time, I found a tic on my head 2 weeks after coming home from Girl Scout Camp (it was quite big). Back then (and because I lived in NC), we only worried about Rocky Mt. Spotted Fever. I brought the tic in, had it checked, and it didn't have it, so I thought I had nothing to worry about.

Our immunologist has dx me with MycoP, which I've probably had for the past 2 years (IgM is high), while both my kids have high IgG, and I wouldn't be at all surprised if my DH has it, too. I have had uncontrolled asthma for the past 2 years, and since being on azith, I feel like it's trying to work on this, but my asthma is worse than ever. The immunol. put me on a 14 day dose initially, and just continued it for another 10 days. But, I have been using inhalers non-stop. He is out of town this week, so I can't call him. I do feel like the azith has helped some, but it doesn't feel like it's knocking it out (the stuff I'm occasionally coughing up now tastes salty, and that can indicate pneum. I've been reading posts about using multiple abx, and I'm wondering if I should be seeing an Infectious Disease Specialist for this? I am also trying to get an appointment with an LLMD who was extremely highly recommended to me for my boys...I was going to wait, until I found out that the Bartonella rash looks like stretch marks, and my DS14 has had those for about 1/2 a year! Both my boys have also been diagnosed with Immuno Deficiency, and I can't help but think that this MycoP is just wreaking havoc on us all. We've been fighting insurance, on top of everything, since June to get IVIG, and I don't know where that's going to go. My DH has RA, and I want him to see immuno doc as well. Any suggestions would be greatly appreciated. Thanks.

Thank you for posting this. I have printed out 2 copies...one for me, and one for a client, who's 2 y.o daughter has trich and appears to also have pica (eats anything and everything...whether edible or not.) Her biological mother also does this, and I suspect that it is all infection triggered (in the child's case, I think it was probably passed down). I have been giving the foster mom all the documentation I can find, because she is scheduled to see a neurologist (who actually knows about PANDAS) in October (he has seen my kids). He responds really well to research, and I am giving them information to take with them, so he doesn't push this child away as "psychological" (I told her to mention my name if necessary.)

My son definitely has abnormal brain waves in the fronto-temporal lobes. Because of that, we initially thought that it was seizures we were dealing with, because fronto-temporal lobe seizures will certainly explain the rage attacks, impulsive behavior, and some other things going on. That was when he was 8 years old, and until he was 12. He is still on anti-seizure meds, and Dr. L. initially agreed that it was that we were dealing with instead of PANDAS (for which we already had a dx.) She put him on a 2nd seizure med, both of which do seem to help, because they are mood stabilizers, too (so which is working?) She ordered another eeg while he was hospitalized at Gtown (brought in through the ER, even though we live in PA), and it was negative (although she saw a rage attack on the video monitor.) She then gave him IVIG, and later PEX which helped immensely. Personally, what I think is going on is that there is definitely abnormal brain activity (it's been documented 6 times, and some for extended periods,) but the behaviors have NEVER shown up during the abnormal brain waves, which happen extensively, and all on the fronto-temporal lobes. In other words, the abnormal brain waves are a separate entity than the behaviors! Yes, he's still on antiseizure meds, because I am afraid to take him off right now (they're not hurting him, we actually saw his moods get worse when we took him off them in the hospital,) but I think they are helping control the moods, rather than seizures. Are they caused by the infection that caused the PANDAS? Are they immunological (he is diagnosed with immune deficiency?) Are they caused by the inflammation in his brain? I really don't know, but we did have a 2nd neurologist, who understands PANDAS, also question whether they are truly seizures. One thing for sure...no one is calling it Epilepsy (in which the behaviors would clearly be related to the abnormal brain waves.) Dr. L. has definitely seen this before (at least in my son), and I suspect she's seen it other times. I would definitely listen to what she has to say about it.

Yes, nystagmus is definitely a possibility. My son was hospitalized after he suffered severe nystagmus, almost fell over our banister, because he got so dizzy, then couldn't stand, got terrible tics, and then a 104 fever, tested positive for rapid strep, and his chorea skyrocketed in the hospital. They still wouldn't believe the dx of PANDAS (the neurologist told us it was "voodoo!"

[One other thing. Has anyone used azith for myco? That's what Dr. B. has me taking (my IgM was very elevated.) I've never taken Biaxin, but both my kids are allergic to it (hives.) Also, if my boys are both elevated with IgG for MycoP, should they be treated for it, too?

[Yes, it definitely can be related to strep.

Anyone know how to interpret these results? The blood work came back as "out of range", but I can't tell if 1:64, 1:32 and 1:64 are considered high or low? Also, Streptococcus Pneumoniae results show "in range", but the reference range doesn't give any numbers...it just says: "mcg/mL" Thanks for your help.

Wow...your description is EXACTLY like my now 17 yo DS. Started suddenly at 15, rages, punching holes in walls, even became suicidal with a plan! He also had strep as a young child, had stomach problems that required surgery, and had an allergic reaction to the MMR vaccine (I don't know if your DD had all of that, but certainly some of it.) We don't know when he got PANDAS, specifically, but we have at least dated it back to 1st grade...he's now in 12th (I suspect it was much earlier), because we just found a 1st grade writing journal of his, and his handwriting changed overnight (I showed it to Dr. L. at our last visit, and it was very significant.) Now, to answer your question. Yes, the diagnosis of Bipolar certainly came up several times. We tried Lithium, Risperadol, and more recently Lamictal. Lithium did nothing (except make him nauseous every morning), Risperadol did nothing except take away his appetite, and Lamictal gave him THE RASH (and otherwise, did nothing.) As our neurologist stated: "I think we pushed that diagnosis into the ground." We had the Cunningham test last year for him, because our younger son was diagnosed with PANDAS (more classic symptoms), and we found out about these symptoms through a paper that Dr. K. had written. Sure enough, his numbers were in the PANDAS range. Every time he took abx, his symptoms went away overnight (azith first, then Augmentin, and now we just keep him on Augmentin XR.) Last September, he got PEX, and most of his symptoms went away. They are certainly coming back again, and we have been trying to get him IVIG (I'll spare you the details, but we did repeat Cunningham's test, and it was elevated.) So, here's my answer. Bipolar is not PANDAS, but I would highly suspect that your DS has PANDAS, and not Bipolar. PM me, and I'll send you some more information that might help you, particularly since she is older, and has probably had it a very long time like my DS. 1) Get the Cunningham test. Particularly since she is being treated for Bipolar, it's really important that you have these numbers to help you feel comfortable that you are dealing with probable PANDAS, and to help you get the right tx. 2) In the meantime, get your dr to prescribe at least one round of abx. The abx of choice is usually Azithromycin or Augmentin XR. When we used Azith it was 500 mg either 1X per day or 250 mg 2X per day, and my DS is using Augmentin XR 1000 mg BID. If your DD's dr. is hesitant, I would have her contact Dr. K., because he really understands so much about the older child (not that the others don't, but he's the one who put all this down on paper, so that I was able to figure out my DS had it.) If there's a positive response, you know you're dealing with an infection. 3) It is highly possible you may be dealing with an immunological issue (that the infection could have caused), a tic-borne disease, e.g. Lyme, etc., so I would very highly suggest that you consult with an immunologist (depending where you live, there is a list of doctors that people on this forum have used. Again, PM me, and I can give you a lot more detail. This is very near and dear to my heart, because we are both dealing with older teens, same presentation, who have probably had it a long time, we have been on this a long time, and I can offer you the benefit of my experience (so you don't repeat many of the mistakes I did.)

b]due to my personal experience [/b]-- i would like to see a protocol come out that includes testing for all possible infections that could cause these symptoms. and unfortunately, there are many -- strep, lyme, myco, cytomegalovirus, ebv, toxoplasma, hhv6, and who knows what else. OMG...I totally agree. And, this would so help our kids get tx.

I read Emerson's response to my 14 (almost 15 yo) DS, so they are really very similar. He said: "oh my g-d, that's so true." He also said that it's like a "white out", where "it's like a blackout, but you know what's going on, you can't focus, and you can't remember what you've been taught. Also, Dr. L. talked about "brain fog" and "cognitive fog" when she testified for us last school year (we were in a VERY nasty Due Process hearing, and trust me, the school district didn't stop at anything to accuse me, accuse my son, etc.) I realized she was discussing it, the other day, when I was highlighting information that pertained to his functioning in school, so I could read it out loud during mediation (we settled Due Process, only to end up in mediation :-0! There was no way they could refuste 5 drs. including his psychologist who was present. But, when I got to "brain fog"/"cognitive fog" (she used both), I even repeated what she was saying! BTW...the mediator was wonderful, and worked out an agreement that gave us exactly what we were asking for (and needed). The district was very lucky that we had had 3 years of exceptional help from the high school (where he was going to go) with my, now 17 yo, so we kept "stroking them", and telling them that they certainly do know how to help in crisis, BUT, our 14 yo had had nothing but failure in 2 different district schools, his perception was that it was going to be horrendous, AND, his 5 doctors wrote some exceptional letters. So, one problem down...now we're just waiting for approval on IVIG (that battle's been going on for 3 months :-(

[We've had blood drawn several times from Quest Diagnostics. They have never given us trouble. All we needed was the paperwork from Cunningham that showed my boys were part of a study. They even spun it. One time, we had a tiny bit of trouble, and I offered to pay them. They didn't know how to do that privately, so they just drew the blood. We packaged it up the way she said to do it (make sure your ice packs are really frozen, and I took it all with me, plus packing tape. I took it straight to Fed Ex after the draw, and sent it back immediately.