tpotter

Sorry, I don't have a response for you, but I am intrigued by the PEX for RA. My DH has terrible RA, and may even need surgery (on top of the cardiac surgery he needed earlier this year.) Personally, I suspect he may have had untreated ARF, because of the mitral valve prolapse that caused his cardiac surgery.) Anyway, if you can direct me to the literature on using PEX for RA, the doctor's name, etc, so I can bring it to the attention of my DH's Rheumatologist, that would be great. He's been pretty open to things. You can PM me the info. Thanks.

DS18 has Lyme, PANDAS, and who knows what else. He was just diagnosed about 3 weeks ago with C-diff, and is currently taking only flagyl (he's apparently been herxing the past few days from that.) Anyway, I spoke with the LLMD yesterday about what to do when we are done with the flagyl (he has started his 2nd round, because the c-diff was still there.) My concern is that it comes back easily, and he has always had stomach problems (even had laporascopic fundoplication when he was 6 years old, as he had almost burned a hole in his stomach from GERD.) LLMD suggested that we switch to herbals at that time, because it should be better tolerated on his stomach. What experience have any of you had? Are there side effects from those that we should be worried about? he is also allergic to grasses and trees, and I know I had problems with milk thistle when I was taking that to support my liver. Thanks.

If your insurance covers psych, OT or any other professional who uses Neurofeedback as a treatment modality, insurance should cover it, if coded correctly. Technically, insurance cannot dictate what means to an end is used for professionals to treat a clients' condition. So, if you are treating OCD, attentional issues, anxiety, etc., the treating professional has the responsibility to determine what treatment approach and modality to use. Good luck.

I've got experience doing it with clients in the past, but it was for ADHD symptoms. I know it can also be used effectively for OCD, but I'm not sure what symptoms you are trying to treat.

We have never been able to cut down the dose without relapse.

When they diagnosed him, didn't they recommend treatment? Also, how did they diagnose it so easily in the ER? That is odd, and also kind of impressive.

Thanks for sharing this. I'm definitely going to plan to watch it.

I know this is kind of odd (but so have all his symptoms been, and it turned out they were definitely related to TD's) My DS15, who is still on the IV abx, because we've been getting such amazing results, noticed today that he has a mole on his upper lip that is apparently going away. Honestly, I thought it was a pimple (it looks like that now), but I have pictures of him every year from the day he was born on the wall, and he pointed out that it started in 4th grade...you can see a definite mole in that spot. Anyone have any idea what, if anything, this could be related to? Just to remind you all, he has: 1) tested mildly positive for Erlich, and definitely has the clinical symptoms (headache, muscle pain, stomachaches...which have gotten about 90%-100% better since starting the IV) 2) has his stretch marks about 80% gone at this time that he's had for several years (started going away about 2 days after starting cleocin IV), so that pretty much verifies they're bartonella) 3) had clinical symptoms for babesia (elevated liver enzymes, enlarged spleen, and low WBC.) Liver enzymes are down substantially from where they were, but are starting to creep up again (I'm calling the LLMD tomorrow about that, too). Spleen and WBC appear normal. He also had sudden onset in 2nd grade (age 8) with sinus infection in ethmoid sinus, and has had a ton of strep infections over the years. When we started the IV abx, he also had elevated ASO titers again. Also, he's started complaining about tingling in his feet (this evening), and also said that he was noticing some tingling in his hands yesterday. He's on IV flagyl and IV cleocin. I looked up side effects, and it says to call the doctor with these symptoms (for flagyl). I will in the a.m., but have any of you had these, and it turned out to be a herx?

That is so funny. We have constantly joked that we think our dog has PANDAS (Puppy Autoimmune Neuropsychiatric....) He was treated for strep when we first got him, per our neurologist's suggestion to the vet, who actually asked her if he should do it. Actually, maybe we should call it: DANDAS (Dog Autoimmune....)

That's what I was thinking...along with Lyme, Staph, mold, or any other infectious trigger.

I wanted to write a response, but didn't get to it. Did anyone else do it? Sounds like so many may have PANS, Lyme, and/or some other infectious trigger.

I think it was Dr. Cunningham who mentioned about treating the gut as well as the immune system at the Autism One conference (speaking on PANDAS.) Anyway, we also see a holistic chiropractor in downstate NY (near Westchester if anyone wants his name). We saw him several years ago, and then moved, but started going to him again about 3- 4 months ago.) He also treats one of the top Lyme doctors (I won't mention names...he just told me he treats him, when he found out we were treating Lyme, Co-infections and PANDAS.) Incidentally, he's the first person who suggested PANDAS to me for my DS's symptoms, but I just filled him in on where/how to get help/tx. He targets everything...especially the gut and the immune system. He does Applied Kinesiology (muscle testing), and really, really intuitively knows what he's doing (I've been to another AK doctor, and he was "trained"...it just didn't come naturally to him.) I bring all my supplements to him, and he tests them. Some are fine, others do nothing, or are also bad for me. He does sell his own stuff, but it's really high quality, and like I said, I get much of what he tells me to take from other sources (like Vitamin Shoppe, GNC, etc., and they work out fine.) I totally agree that you can start by targeting the gut. I would suggest, though, that if possible, you get someone to test you. We have had all kinds of probiotics suggested per knowledgeable doctors, but when we were tested, they didn't work for us. DS15 and I are on the same thing, DS18 takes something completely different. DH refuses to go, so he's on sacchromyces boullardi (like the rest of us) + the cheapest probiotic (I question whether it's working, but I'm not going to fight him on this...as it is, I had to fight him to get tested for Lyme, and he's the only one who came back 100% positive on the Quest WB Personally, I feel WAY better since starting all this, and I know it's not just from the abx. Anyone who wants the docs name and contact info, PM me.

Make certain that you have checked your benefits, and see if there's anything you have to "prove" to get certain codes covered. For example, both my DS's have specific immune deficiency, and it is only covered on our insurance if I can prove that they have been getting sick from it (I got school attendance records for the previous 4 years + doctor's notes from just 1/2 a year...8 instances of either strep or staph in 1/2 a year) to prove it. This is what our insurance claims person insinuated that I do (plus that's also what the state insurance commission is going to want to see proven.) Then, if they still refuse you (like they did us, you have all the information you need to fight it (we evenutally won, because of that.) Good luck.

Priceline...name your own price. I always ask for the Stamford area, and start with 3 1/2 stars. You get one bid per day per person paying (so if you and your husband are both going, you can bid once under your name, and once under his (the person who got the bid, has to be present.) You can get additional bids if you either change the location and/or the # of stars. For the record, I have gotten the Stamford Hilton, Stamford Marriott, and one other. BUT...there are sometimes charges for parking (which there aren't at the Doubletree). I have never paid more than $10 per day at any of the hotels, but keep in mind that that is not negotiable, and gets paid directly to the hotel. You don't get to choose which hotel you get, but you do get to choose what hotel level you want...you won't get BELOW that level. Once your offer is accepted, you have to take what you get. They also automatically give you a double room (2 double beds,) but you can call the hotel after you win the bid, and switch it if you want. The only thing is that some of the hotels in the area are not allowed to put a rollaway in a "double" room. Case in point, I paid $55.00 per night (plus parking at the hotel) for the Stamford Marriott last time we went...in the heart of downtown, right off I-95, 3 1/2 stars. I'm not saying you will definitely get that rate...it depends on how busy the hotels are for the time you want to go, and I pay different rates each time, but I always get a way better deal this way than any other way (as long as I have flexibility on which hotel I end up getting.) Good luck, and have fund bidding.

Azith is an alternate to biaxin. Both my kids are allergic to biaxin so they weren't options. Unfortunately, DS15 had anaphalaxis to IV azith, and now won't be able to take the oral azith anymore. But, he's doing fine on clindomycin. We're treating bartonella with clindomycin and flaggyl (IV), but I think those are also options orally for bartonella.

I'm really happy for you. I would definitely go through the next appeal, and would suggest you address every issue they brought up...step by step, and make sure you have a doctor (PANDAS specialist is important like KimBallot said) able to confirm your information. If you're denied again, you can ask for an independent review by medical professional outside the insurance company. I don't know how many of you are aware that these appeals are done by people who are 1) not necessarily pediatricians 2) not necessarily specialists in their fields 3) worst yet...not necesssarily even medical professionals. Case in point...I found out that our appeal last year was determined by a surgeon, psychiatrist (adult), and the director of business services (non-medical.) Pretty disgusting...huh? I'm very glad you decided to go the private route and then fight it. Your child deserves a chance to get better, and not have it drag on.

Thank you for sharing this. It's really good.

Thank you for sharing this. It's really good.

My DS has had unremitting hunger at times. It calmed down when he was put on lamictal, and when he was taken off for an extended in-hospital eeg, it came back. Then, when we started lyme tx (I don't know which drugs caused it), we had the problem again for a short time. I gave him more tryptophan. Seems to help some (peanut butter is full of tryptophan + it's high in fat, which takes it straight to the brain (this is my theory, folks...not fact...I just know it works really well on my DS for the hunger and the rages.) It seems that when she first took Tindamax for 7 days (just finished last week), she seemed hungry all of the time. Nothing satisfies her. She even asked to come with my husband and I last night to a boring car dealership just so she could keep herself from eating. So...she doesn't want to eat, she just feels very "empty." This is not an OCD compulsion or psychological symptom (my son has OCD....I know very well what that looks like). We also eat organic GFCF, so most of what she is eating is quite healthy: proteins, nuts, fruits, veggies, very little sugar and she drinks mostly water.

Thank you for sharing this. It is very interesting. Ozimum, I also agree that fixing the gut helps, at least some. We are doing that extensively right now with our holistic chiropractor.

It might help more than you can imagine. Biaxin is one of the drugs that is particularly good for treating mycoplasma pneumonia. If you can get rid of that, and find any other possible infections (since his immune system was affected, there's a good chance that he picked up other "bugs" as well, then getting rid of the infection, and then doing the HDIVIG, may be the way to go. I'm so glad to hear he's doing well.

All I'm saying is that hep A and hep b were also suspect in my DS, as were the abx he was taking. And, in fact, the abx were causing problems, but in his case it was that the oral abx, as a whole, stopped working for him, and were now causing additional problems, in addition to now what appears, clinically to also be lyme. I'm not saying that everyone has it, I'm just saying that, although I really wasn't expecting it to be lyme, or even wanting one more battle to deal with, plus the WB came back negative, I couldn't ignore what I was seeing clinically. Perhaps it's not even lyme, but just responding to the IV abx. But, there's also no question that we're also dealing with PANDAS, strep (his ASO was elevated, too.,) and that PEX and IVIG have definitely helped both my kids (personally, I think PEX more than IVIG, but that's another discussion, and not an option, either.) Again, I don't want this to turn into a battle, and I'll back out of this one. I'm really glad all her numbers came down so quickly.

[i was just going to respond, and then I saw kimballot saying to contact me. So, here's my take. Another forum member (I don't remember who...sorry), PM'd me after everything that was going on: The symptoms of low WBC, increased liver enzymes, and spleen enlargement (I know your DD didn't have that, but maybe it hasn't been found, either...my DS did have it suddenly), are all symptoms of Babesia (did I spell that right?) Also, my DS turned out to be positive (very slightly) for Ehrlichiosis, and when I looked at those symptoms, he very, very definitely had them. There are other co-infections, too. We had elevated ASO (IgM) and elevated MycoP (IgG.) Dr. B. agreed with us that there was definitely infectionn present that wasn't going away. We also stopped all oral abx (because of the elevated liver enzymes, which we thought were just coming from the oral abx,) but within 1 day, he was extremely ill. That's when we found everything else...got blood work, ended up at the ER. They didn't seem at all concerned about the enlarged spleen, which blew my mind, because he had also had pancreatitis in November. Alll that being said, we are having AMAZING results with IV abx. Within 2 days, his stretch marks (that LLMD thought was bartonella, but wasn't responding to oral abx) started to go away. He was only supposed to get them for 1 week (we have also had good results to date with IVIG, and I do think that was necessary, at least at first), but with the results we have gotten, I spoke with the LLMD (because of the stretch marks), and he said to continue the abx for another week. That turned into another month, and we just added a 2nd IV med, and will be doing it for at least another month. Chronic nausea is gone, stomachaches are gone, headaches are way down (symptoms of erlich), stretch marks are WAY better, memory is greatly improved, liver enzymes are back to where your DD's are (they came down within 1 day), spleen is back to normal, WBC is back to normal, etc. I don't know if you ever got checked for lyme, and I don't want to start everything all over again, but there's now no question in my mind that we are dealing with strep, autoimmune issues, lyme and co-infections, and goodness knows what else (probably because the immune system was so messed up.) IV abx has been an amazing option for us (thank goodness I fought so hard to get someone to do it...it's not needed for everyone, but certainly is for my DS.) Forgot to mention that he only tested positive on 1 IgG band on Quest Western Blot, and the Igx that we did AFTER all the symptoms started last month, came back with Erlich only slightly positive. One of the members of the lyme forum posted that bartonella can stifle the test results for all these infections. PM me if you want more information.

I am so happy for both of you. You guys have been through a lot. Here's hoping it all continues.

Maybe! Wouldn't that be great.