tpotter

Wendy, were you guys IgG or IgM positive or both? What is really disconcerting for me is that our holistic chiropractor who is absolutely amazing at what he does, also agreed that we needed to treat the immune system (maybe he determined that from the muscle testing he did.) He definitely looked at the lab results, but just didn't seem to feel that we could do much else. I will certainly send your information to him (I've heard of viragraphis...don't know where, but have heard of it.)

I just thought of also, Thyroid panel Adrenal tests celiac

Thanks everyone

I showed these results to both immunologist and to our holistic chiropractor. Immunologist said that having IgG means that they had they infections in the past, and that now they have immunity. I pointed out that it says that high IgG cannot always distinguish between active or past infection, but he insists it's not a problem. I then showed the results to our holistic chiropractor, and he said that having the high IgG is not necessarily good, and he's not at all surprised that there were viruses. But, he then said: "What can we do about it anyway?'" I suggested valtrex or something like that, and he said that it's not something I would want to use (I did hear it can be pretty rough.) He said the better way would be to get their immune systems better so they could fight all these infections. What do you guys think? I still have to followup with the LLMD. The IgM's, btw were perfectly normal. I still want to have myself tested, because I have been the canary in the past (with MycoP.)

I know this has been posted before, but I can't find the list, and also thought there might be more suggestions at this point in time. I have been asked for a list of diagnostic tests I would suggest be run for kids to try to figure out what they have. I can think of the following, but would like suggestions, so as complete a panel can be done before some of these families go to the specialist for treatment: ASO AntiDNAseB Chlamydia C-diff H-Pylori WB Igenex WB and co-infections (maybe) MycoP EBV Parvovirus Coxsackie HSV-6 IgG IgM Strep Pneumo titers What else would you guys recommend for a new family trying to get a dx? Thanks

Without getting into a big battle, if you are still looking for "missing puzzle pieces", have you looked into testing for viruses, Lymee/co-infections and gut issues (such as c-diff, chlamydia, and h-pylori? Quite a few of us with clear-cut sudden onset (and non-so sudden onset) have found that there are more infections going on, because the immune system has been affected. Also, have you had a complete immune system workup? I am not putting down Dr. M by any means. She happens to be one of the few docs we haven't seen, but I've heard fantastic things about her. But, you have certainly been to some of the best, and I know that both would certainly think it appropriate to look at additional possible infections. Having been through this for at least 8 years now (we do now believe that my 18 year old may have had all of this since birth,) We find more stuff, it seems, every day. This is just my personal opinion.

I'm going.

I noticed you are using burbur. I would also check to see if that could be affecting the liver enzymes. Burbur can be pretty potent (we had to stop when DS was on burbur and artemisia, and had a massive herx reaction (ended up in the ER.) Doc said to stop the burbur. Also, have you checked her wbc? When DS's liver enzymes were rising, that's also when he had low wbc and enlarged spleen, and all 3 are symptoms of babesia. It only became visible to us when we got more agressive with tx.

Just PM'd you.

Wilma, If there's any swelling in a joint, our orthopedist said that the synovial fluid can be checked, and is quite accurate. He has diagnosed 15 people this way, and had the insurance company question him, but because he had the synovial fluid results, everything worked out fine.

We've had good results with multiple IVIG, and plan to do it as long as we need to, and as long as we can get insurance to pay. We tried stopping for 3 months, while continuing treatment for Lyme and co- (along with PANDAS), and we are starting to relapse. As EAMom mentioned, this is not a cure, as many of us have found (although some have not seemed to relapse after 1 or 2, it does not seem to be the majority.) We are continuing with Lyme tx, and everything else (including viruses that we have now found) that creep up, but I do believe that also treating the autoimmune component is critical for function (at least for my son.) We do not use psych meds, and OCD has been helped dramatically with just the PEX (we had first) and IVIG.

What was the diagnosis code?

Thank you. I'm going to bring it up to Dr. B. who we will be seeing on Thursday, anyway, and also to our LLMD. Plus the DAN doc who ran it should be calling me back (although I suspect he's going to appreciate the other 2 figuring out what to do.) Also, we happen to have a followup with our holistic chiropractor on Saturday, and I'll have him do some muscle testing to see what should work best.

OMG...I just looked up parvovirus B-19, and it's fifth's disease (the one where the kids get very red cheeks...looks like they've been slapped). I got that in about 2002/2003, and it took about 1/2 a year to figure out what was wrong (I finally found a good doctor.) They kept thinking I had Lyme, but it wasn't getting better. My left ring finger got so swollen that I couldnt' wear my wedding ring for a year. l It can cause arthritis-like symptoms in adults, so when I see kids with it, I freak, because I didn't want to get it again. My 15 year old became sick about 1 year later!. Unfortunately, once their faces are red, they have already had the opportunity to spread the virus.

I agree, thank you for clarifying. Also, herpes virus is in virtually 100% of the population, but my understanding is that when you combine all these viruses together in an otherwise immune compromised individual, it's not a good thing. I was expecting maybe 1 or 2 positive tests, but not all of them. I'm waiting for the doc to call me back.

Just got DS15 virus tests back. He's positive for 2 types of EBV (VCA antibody and EBNA)...don't know the difference, CMV, HHV-6, and Parvovirus B-19. Yikes. I guess it's one more piece to the puzzle. Still waiting for DS18 results.

Just got DS15 virus tests back. He's positive for 2 types of EBV (VCA antibody and EBNA)...don't know the difference, CMV, HHV-6, and Parvovirus B-19. Yikes. I guess it's one more piece to the puzzle. Still waiting for DS18 results.

We have only used vanco for my son's c-diff. I don't want to use it for anything else, because if he develops a problem with it, he won't have anything to treat the c-diff he has now had twice.

I totally agree with DCMom. I think the hardest thing has been to make a decision. One thing I have finally learned is to go with my gut...every single time. Not that I don't listen to our docs...I most certainly do. But, as DCMom said, we have to be the directors and everything else for our children. Don't be scared off by IVIG, steroids, PEX or anything else. Both my chlidren have done it all, and yes, we are dealing with Lyme as well as PANDAS, and we are probably dealing with other infections, too. As far as I'm concerned, I'm thrilled that I did all of these...not only because they have helped, but also because I can say that "at least I have tried." In my opinion doing nothing is worse. Think of it this way, if you do nothing, you know what your consequences are going to be. And, you have said that your daughter can't live this way, and that your whole family is completely stressed. Sometimes, you just have to trust your doctor and your own gut. I also think that DCMom's suggestion to decide...what should I tackle first...is the best suggestion I've heard. Then, at least you are doing something. Oh...also...tics are not always the last to go. We initially had an increase in tics after PEX, but suddenly they were gone after about 3 weeks (they come back sometimes, but not as badly), and there wasn't even an increase in tics at all after IVIG (DS's were so bad that he had to go to the ER several times for O2, because he couldn't breathe.) I'm not saying this is the case for everyone, because I do know that tics area huge problem for many, but just keep in mind that every child is different. Steroids also helped us when things were at their worst. Even though I try to avoid them now, because I know we are dealing with Lyme, I would do them again, if necessary. Good luck, take a deep breath, and really decide...what am I going to do. Then do it. BTW...we see many of the docs...I consider them all part of our team. I listen to each, and then decide what I feel makes the most sense to me. And then I go for it. I'm praying for you.

Very quickly, because I have to leave for work. We are one of possibly the few who have had PEX, IVIG and abx. We have seen many of the PANDAS specialists (Dr. K, Dr. L, Dr. T, Dr. B.) We also see an LLMD, who does agree that IVIG certainly won't hurt, and as long as we've seen improvement in the past, may be helping (this is not Dr. Jones.) PEX stopped my children's OCD (well, at least one of the OCD's for one of them, and then IVIG got rid of the 2nd.) IVIG helped my DS(now 18) jump approximately 5-6 years in social awareness (he is also diagnosed with Asperger's.) This was overnight just following the 2nd IVIG. I stopped IVIG at the beginning of the summer, because we wanted to see if it was enough, especially with the abx cocktails we are doing for the Lyme, Bart, Babesia, Erlich, etc, We even threw in IV abx on one, because of very severe symptoms. Unfortunately, he had allergic reactions to the IV version of 2 common abx, so that had to stop (we are continuing with others, just not as helpful, and everything is oral, now.) DS18 keeps battling c-diff, so Lyme tx has all but stopped. Being 18, I can't control his diet, and unfortunately, it is a big issue for him (can't stop himself at the moment.) We are currently working on getting IVIG again for them (hopefully this weekend), with our LLMD's blessing. They need the help, the bandaid, the whatever you want to call it. Personally, my belief is, that no one...not any of the docs we have seen, not any of us...know exactly what is truly at the bottom of it all for each of our children (personally, I believe each of my boys are different, and honestly, I think even DH and I may have some form of PANS/Lyme, etc), but we all try what works and what helps. There's no way I'll go williingly back to pre-PEX and pre-IVIG, because my children were completely non-functional. I think, in the end, we all have to do what we believe works for the best for each of our children.

I am going to agree with SF Mom. We have been treating for Lyme and co-infections since last August for my entire family. DS15 was the one who we were least sure about. In May, he suddenly became very ill, missing almost the last month of school. Ended up in the ER with terrible pain. WBC was low, liver enzymes elevated, spleen enlarged, and ASO was elevated (about 325). Given the fact that he got pancreatitis last Thanksgiving from abx, we were certain that he had been exposed to strep + all the abx we had him on for Lyme was causing all the problems. I was frantic, and we got him on IV abx for the strep. All of a sudden, the stretch marks he had had for several years started seriously fading, so it became apparent that he definitely had bartonella. Also, it was pointed out to me that the rest of the symptoms could all be babesia. He was treated for all of them, and we are still treating. But, there's no question that Lyme and co-infections are definitely part of his picture (in addition to strep.) BTW, we tested for co-infections, and the only one that came back even slightly positive (Igenex) was Erlichiosis. When we looked online at the symtpoms, there was no question my son had had those for years. My point is that even if the tests come back negative, just like with Lyme, the blood tests are very inaccurate. If you are having any problems with joints, though, the synovial fluid can be checked, and my understanding is that it is more accurate as a diagnostic tool. Good luck.

What about epsom salt foot soaks? We have done that. Also, bentonite clay, activated charcoal, and there are others suggested. Toxins are being released when you are treating with abx, and you need to soak them up. I've heard good things about chlorella, too, but don't have any experience with that. We do these twice a day (I try to get everyone to do 2 different ones each day, because they work differently.

Momcap...just a thought...if he always winds up in the fall, could he have allergies to something like mold or something else? My allergies are worst in the fall, and I am very allergic to mold. Also, the ragweed here has been horrible the past few weeks. I've been feeling awful, and my DS' behavior has been ramping up along with sinus trouble and allergy looking face!

We have been giving DS15 2 benedryl about 2 hours before he goes to sleep. We've been doing it for about 2 weeks now, and it has definitely made a difference.

We use a less expensive one, and it works just was as well. Also, we changed, because florastor has lactose, and I am lactose intolerant. We use one by Jarrow ("non-dairy'.) We've been using it every day for years, since starting abx. We also use other probiotics in addition to it.