tpotter

More docs in the know are also saying that, as Dr. B. has been quoted (in a news article) as saying: "It's not rare, just rarely diagnosed." This is great. We just have to keep getting it out there. Maybe we could get it in Newsweek or Time Magazine or something?

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.) OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP. It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

My Ds is seeing an ND. She uses allopathic (abx), natureopathic, & homeopathic approaches. Son has been on abx once, but has also been on Alinia which seemed to have some abx properties along with a lot of other things (i.e., anti-parasitic etc.). He is now using Berberis Formula, which from my reading appears to have abx qualities as well. It seems that the natureopathic meds (herbs) that we have used are treating many things at once, which has worked well too. Have you tested for MARCons? Nasal swab? Not sure what doctor you are seeing but an ND may be an option. The cost for the natureopathic is expensive which is difficult. Did just find out that our FSA savings account thru dh work allows these over-the-counter meds. but you have to have a prescription, so that saves you at least 15% or more. Our insurance only pays about 25% of doctor visits (out of network) which is not great either. It is possible to slow down treatment which would cost less but would take longer for healing. On another note, my son did the DNA testing and Dr. S states that people with his halotype (per test) do not get better with Abx alone - so this was a good thing to learn, after the fact. Have seen you on here for a long time so I am hoping you find some answers and healing soon. Take care. Thank you. Yes. We've been here a long time, but particularly because it took 4 years to even get a dx from sudden date of onset, and then even longer to begin organized tx. As most everyone else...we are working our way through it all. Doesn't help when allergies, c-diff and such get in the way. But, I feel lucky that we, at least, have some answers, and that we have found a good group of drs. to treat my boys. I'm am also so appreciative of this forum, because we are the ones supporting each other, and helping each other find our way through the "maze."

I'll ask our LLMD. DS18 is doing Cat's Claw, but I never saw any herxing on his part. Although I suspect he was sick maybe his whole life (only found out when he was 15, but can now date it WAY back), the tx we've done, including IVIG seem to be mostly holding him (although we do get flares...just not quite as dramatic.)

I really appreciate your update right now for many reasons. I keep feeling like we are not truly hitting something for my son, and although we are doing IVIG every 6 weeks, he's great for the first 3 weeks, but then consistently not doing well starting week 3, and then never getting better after that. So, we know for sure there's bartonella, because he clearly has the rash, and it got a lot better (but not gone) after IV cleocin over the summer. He also finally tested positive for erlichiosis, and the symptoms are pretty straight forward, so I'm quite certain it's accurate. But, here's the problem. He can't take Rifampin, because of another medication that he takes (decreases the effectiveness of the other medication, and he HAS to take the other). Also, he now can't take Azith or Flaggyl, because he had an allergic reaction to both while on the IV (we tried adding each one at a time to the cleocin, and he suddenly couldn't breathe with the azith, and got a huge hive on his neck, and then had tremendous difficulty breathing. He was last put on 30 days of bactrim (because of a cellulitis that both my boys keep getting this month) + cipro and pulsing tindamax (1 week on/1 week off). But, it also appears that strep is going around the house, so we tried replacing the cipro and bactrim (latter ended, anyway) with augmentin XR. We just went to the doc yesterday, because we have another infected cyst (I suspect MRSA, and it got swabbed...with great argument from the local pediatrician...believe it or not...I did a 4 hour trip to the DAN doc to get the swab done!) So, DS is now on cefprozil twice a day, and the tindamax every other week. My other DS keeps getting the same kind of skin infection and sinuses were horrendous, so he got a shot of Rocephin, because he keeps getting c-diff, and can't take any more oral stuff. So, I'm just so frustrated that we can't seem to get to the bottom of the whole thing, and I think a huge part are the co-infections (particularly bart) that we can't knock out, and we can't take the kind of meds. Any sugggestions? We've been treating this for a year now.

Sounds like everyone in your house needs to be tested. DH may have been able to successfully fight it off, but sounds like DD is now sick, and DH might still have something...just not be reacting as much...and who knows...maybe you have something too, by now!

Has anyone heard of this, or had any dr. mention it? I was doing a search of some symptoms that DS has had (enlarged spleen, liver, low wbc), and that's one of the things that came up (we're seeing a hematologist in the next few weeks per our LLMD's recommendation, because of the spleen continuing to be enlarged.) It was very interesting that the description mentioned possible seizures, myoclonus, and of particular interest is they say that it is considerably higher in an Ashkenazi Jew (from German descent). I'm not saying that he has it, but there were an awful lot of similarities, and I'm just curious if this could, potentially, be part of the picture.

Has anyone heard of this, or had any dr. mention it? I was doing a search of some symptoms that DS has had (enlarged spleen, liver, low wbc), and that's one of the things that came up (we're seeing a hematologist in the next few weeks per our LLMD's recommendation, because of the spleen continuing to be enlarged.) It was very interesting that the description mentioned possible seizures, myoclonus, and of particular interest is they say that it is considerably higher in an Ashkenazi Jew (from German descent). I'm not saying that he has it, but there were an awful lot of similarities, and I'm just curious if this could, potentially, be part of the picture.

OMG...this is so much like my DS. I keep saying the same thing...we are missing something (we're in our 14th month of treating for Lyme). I do know that he still has bartonella, because even though the rash went down a lot during IV abx, it's still not gone, and keeps getting slightly worse, then slightly better. Now, we're dealing with strep again (even I have it...was in bed all day Friday and Saturday, and most of the day yesterday...my throat still hurts!) But, something is still missing. Also, in addition to checking for mold, we are also doing supplements, applied kinesiology (from a top notch doctor), lyme, PANDAS, but something is missing.

Have you contacted the NIMH to see if you qualify for the IVIG study? If so, everything is paid for, including tests and treatment, travel, etc. http://clinicaltrials.gov/ct2/show/NCT01281969

I have to completely agree with DCMom. We had terrible experiences with our DS on psychotropic meds, and after I saw Dr. Murphy's article years later...it all made sense. In fact, when my dad (who died from Parkinson's this year) was given some heavy duty meds and became violent, I even told his doc about the article (and the fact that I suspected he had probably had PANDAS/Lyme all these years...my DS18 is almost a carbon copy of my dad), she was extremely interested in reading up on the article, and also stopped my dad's meds. It's not that I disagree with psych meds, it's just that many kids are put on them without ruling out other diagnoses that the meds may be contraindicated for. In my DS's case, he became horrendously violent (swung a metal pole at my head in a split second), and the doctor actually INCREASED the dose. But, when we finally had a diagnosis that more clearly matched the clinical picture (PANDAS first and then Lyme as well), and started him on abx, his symptoms went away in as few as 1 hour! As that wasn't enough anymore, we added in 1 PEX, and now have done multiple IVIG's. But, he's a different kid now (not 100%, but at least 75%.) I would focus on getting the IVIG quickly. If you have problems getting the authorization, PM me, and I'll give you some hints...we found very hard, and finally got it.

I love the fact that you're getting the massage! I go through periods when I go over to the mall and get a 15 minute chair massage. It's just the best. Even my kids occassionally tell me I need a massage!

We were told by same Immunologist "no way", and that's the way I felt anyway, because I just believe that if these kids' immune systems are messed up, anyway, why add to the load by messing more with their immune systems. So, no, we did not vaccinate.

Very interesting. Thanks for sharing it.

It can be a symptom of erlichiosis. My DS has had terrible neck and back pain, then he tested positive for earlichiosis, and it was just one of those "no duh" moments when I looked up the symptoms (several other symptoms, too.) He also gets neck pain when his strep is flaring.

I emailed the superintendent of schools this morning, and suggested they contact Dr. Leckman at Yale, since he heads the Tourettes Clinic there, and knows a great deal about PANDAS and other causes.

No offense but it seems to me you're just trying to start a discussion and haven't really read up a whole lot on Dr Klinghardt. If you had you would see a simple Google search come up with quackwatch along with HUNDREDS of amazing testimonials from real people. I don't find it necessary to explain Dr Klinghardt or holistic approach. When someone reaches the end of the road, they find him and his methodology and other similar practitioners who practice energy medicine. One needs a basic understanding of Quantum physics and the human nervous system physiology to understand most energy medicine concepts. There are lay term DVDs available but like I said, unless you are ready to believe you won't. Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis. Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day.... There are books, there are studies and there are clinical trials. Do your research on your own- forums, website search in depth,- even Pubmed has hundreds even thousands of articles for the benefits of individual herbs for bacterial, viral, fungal etc issues. But one has to understand that in many ways all this is pioneering work and the double blind studies are simply not feasible right now. Your life, your choice, your research, your decisions.To each his own. I don't believe there is a right or a wrong. I wouldnt be swayed by what anyone says- steroids are the best thing, herbs are great, whatever. I would do my own research. You can't assume the other person has done all the research. You may have a better understanding of certain aspects that another doesnt. A mom who choses steroids may have a certain understanding of PANDAS and how she wants her children's future to be. You may do the same research and come to a different conclusion. Trust your own instincts. yes, I've had PANDAS since age 4 and my son has it too since age 2.5. If you truly want to understand PANDAS even better than you already perhaps do now read/Google Dr. Aristo Vojdani's work on PANDAS- its amazing. Very nice response.

Since PANDAS/PITANDS (PANS) causes autoimmune neuropsych symptoms, I think it's safe to say that anyone who has infection triggered autoimmune neuropsych issues does have it (no matter what infection triggered it.)

Interesting. My brother always had very red cheeks. I always wondered what it might be. I'll be interested to find out...if anything specific.

I did not mean to be mean at all. I didnt realize taht her son had autism and that's the only reason why I said maybe you are expecting too much. It is important to be hopeful but also realistic. Anger is also seen in autism. PANDAS16, with all due respect...Autism is not necessarily just autism. Many of us have kids who have been diagnosed with Autism (one of mine included), and they have gotten better with PEX and IVIG. Both my boys got PEX one time, and it helped for a good 4 -6 months. They have also gotten IVIG, and that has also helped.) My child with "Autism", jumped approximately 6 - 7 years in social skills following IVIG...overnight, and started "getting" things that he previously did not "get." After PEX, he was very calm, inutitive, involved in home and school like never before, and one of his two major OCD issues disappeared. We truly don't know exactly what Autism is, except that it looks like PANDAS. Autism is a set of symptoms, which include: language, social and sensory. Every person with Autism has a different amount of each of these symptoms, and that's why it's called a spectrum. We are finding more and more that some Autism can be treated biomedically. How many of of kids on this forum suddenly lost the ability to speak? How many became "Autistic" overnight? One of the things that many have thought over the years is that it's not uncommon to suddenly get Autism when a child is 18 months old...that's why the whole controversy exists with immunizations (personally, I believe that the immunization may have something to do with an already compromised immune system, but that's a different post.) At any respect, I have to go wake my kids up right now. I know you didn't mean any harm, but please don't assume that Autism is a different disorder. It's really not ncessarily. All the symptoms are similar to encephalitis (sounds remarkably like possible PANDAS...right?) Melanie, now to respond to your post. Please, please give it time. Your son's body and brain need time to respond to this onslaught of healing. Don't give up yet.

I am so, so sorry. Know that you are in my prayers.

Exactly what we were told, and waited quite awhile until we finally got the doctor to try. Yes, my DS has exactly the same thing, and someone else just wrote in about that the other day, too. DS is on Lamictal. It is both an anticonvulscent and a mood stabilizer. Here's what we found (and we figured part out when he was taken off at a later time to do a followup eeg, and then not put back on immediately.) The lamictal slowed down the amount of time between non-rage and rage episodes (he would go into a rage episode with no warning, but on lamictal, we had about 1 - 2 minute "warning", which also now gives him time to recognize the change in his mood, and run to his room or wherever.) He was getting ravenous hunger that couldn't be stopped. He would eat for 2 hours straight, and still was ravenous (I don't think it was OCD, because he didn't feel compelled to eat, he was just extremely hungry, and the hunger part of his brain wouldn't shut off.) When he got back off the lamictal, this problem came back, but when getting back on the lamictal, it went away, again. There's no question lamictal has helped. BTW, he is also on a 2nd anticonvulscent (oxcarbazepine), because the peds. neuro thought that another symptom may be seizure related, too. I suspect this issue with: "everyone has seizures, but it's not a problem" is probably more likely the fact that no one has correlated the problem. In reality, my DS's problems do get dramatically better on medication. In fact, the last eeg we had, showed no seizure activity (whereas the 6 before that had definitely fronto-temporal lobe seizure activity. So, all that being said...go for the meds. I think it will help.

We used IV abx from May - July (although I would be afraid if there was any chance he would pull out the line.) That being said, I do think it would have made a huge difference if he hadn't had bad reactions to 2 of the abx (flaggyl and azith), and was really only able to use cleocin alone in the end. If you're going to do it, I would highly suggest winter, because we ended up having no choice but to pull it out in the end, because there was sweat getting under the tape, and causing skin breakdown. I agree with IowaDawn that IVIG has helped us, too, and you might want to consider adding that in, as well. Your child's response to Lyme & co- is autoimmune, and the immune system may need a little help.

I know this isn't pertaining to your thread, but I just had to comment on kimballot's tag line at the end of her post. Wow...if that doesn't speak to what we are all about, I don't know what does! Love it.