norcalmom

So true! It consumes my life as well. Accommodating them, scheduling them, researching, doctors appointments, worry- its exhausting. Once when DS was being demanding and unaporeciative, I pointed out all the time and expense and work I do for him. He told me it was my job and- imagine what would happen to him if I didn't do that. (He yelled this at me). It was not said in a greatful way, but at least he aknowledged the sacrifices I've made are helpful to him! You are not alone!

It's about 130 for cam k.

PS- he also does not tic anymore.

176 3 years ago 132(this was 3 mos post IVIG, and he was really well) 215 - 3 months ago. He had more varied symptoms at 176 than he does now. But his one really annoying OCD thing is more entrenched than ever. We've just figured out how to work out lives around it. He had raised lyso ganglioside and D1, the first time - and tics ( supposed linked to lyso, and possibly Tubulin being high) Now the only high anti- neuronal is D1 - but it is on the exact cut off for normal. So even though he only has high cam K, he has other anti neuronal that aren't tested for making that cam K so high. That's the theory anyway. Cam K II is a "general activity" against neuronal tissue. This isnt exactly correct, but its easiest way to think of it. Where the other 4 are for specific types of neuronal antibodies.

There are different schools of thought on this. I personally opted to do this when my child was at "baseline". While it may go up when they are exacerbating, I was using the panel to see if he was producing auto-antibodies most, or all of the time. And, now that I've done this test 3 times, doing it at baseline first, gave me a "baseline" for comparison throughout the years. My reasoning was that if most of the time they are not producing these antibodies, than I probably would not get IVIG, and I was using the test results to see if immune therapy was warranted. Of course, I worried that since he was doing so well when we had the first blood draw, that it would not show any autoantibodies. That was not the case. You may ask Moleculera if they have any hard evidence comparing sera reported to be taken in exacerbation vs non-exacerbation (but not convalecent sera - not after treating with IVIG - thats totally different) if there is a difference and how much. Good luck with your decision.

Thanks S & S. I just bought a number of duos in addition to the Cordyceps. In more drawn to the immune tonics, and stopping the cytokine cascade than the actual killing off of bacteria. We've done a lot of killing off, I'm looking for things to build back up now, and I was surprised to see how much research there is for so many of the herbs/supplements mentioned in his book on immune response. I'm thinking of contacting a doctor of TCM or herbalist or naturopath for help. I'm going to start with Cordyceps and add in a couple other protective and mine regulating herbs and see what happens. I just hate to drag DS to yet another new doctor. Thanks again for posting your experience.

My DS loved the deep cleaning and found it relaxing, just an FYI. Surprising. Don't let any dentists give your child Nitrous Oxide- invade the have MTHFR cheched first. Some kids with MTHFR mutations cannot process the NO- so it u don't know, just say NO to NO. They reported back that his teeth were really clean any way, which we kinda already knew, but they like to follow their protocols. Glad something has worked for you.

I bought some capsules. S S - are u using it to treat yourself for Lyme or MycoP or other immune issue? Are you using other herbs in his protocol along withit? I'm esspecially wondering if any pandas kids have had increase or decrease of pandas symptoms with it.

EAMom- it took DS Two months. See my post above NancyD. Everyone is different. I think NancyDs more unique, my son more typical response. I forget where I read (may have been mercola) that 70-100 where u want to be if you have autoimmune issues. I'm shooting for around 70 for DS.

My DS's went from 16 to 45 in about 2 months on 5000 per day. I think that is typical response, but everyone is a little different. NancyD - wondering if you still monitor your daugheters levels since she is on such a high does, or is that what it takes for her to maintain at 65?

I've read Stephen Bruhner's Co-infection book twice now (the one on mycoplasma and bartonella). And I'm trying to decide which herbs will be good ones to start with DS. Most of the herbs have many, many actions. And he recommends LOTs of them. Coryceps is one of the primary ones mentioned in his book. So, I did a little googling, and saw a couple articles (not scholarly) that said not to use it if you have auto immune disorders (odd, since it is according to the book, immune modulating) . Then, digging deeper, you can see that it has properties that both suppress and stimulate the immune system (scholarly articles). One of its constituents has been isolated and was 2012 "miracle drug of the year for MS". It's that old conundrum, boost his immune system, or suppress his immune system. This herb does a bit of both apparently. Anyone have an experience with it?

44 is good but not great. ideally in autoimmune disease what I've read is you want between 70-100, but not over 100. This is for an adult. I don't know if children levels differ or not, you need to do your own research on that. My son's has gone from 16 to 45 on 5,000 mg/day, and I still want to increase it, but not as fast, so I'm giving 5000 every other day or so. My son is 14 and adult size. I also occasionally give him some K2. Probably should do it every day (helps body absorb the D3, and it counters any issues with too much D3 - ) but the only K2 i could find had a lot of D2 in with it, and it messed up my dosing, so until we get him to the level we want him (above 70) and we adjust the 5K dose down, I just give him the occassional K2 tab.

Thanks for the explanation. Our immunologist at Stanford said that the rheumatologist that is part of the "pandas clinic" has used some immunosuppressants - for those that did not respond to IVIG. He mentioned Riumxxxx(I can't rember starts with an R, another one similar to embrel) . I wish/ hope someone does a study on These drigs in pans. Also wondering what markers did they look at to determine if they should use the immunosuppressants? Just failure of IVIG? Was there any other anomaly in your child's immune system indication autoimmunity? Thanks again for explanation, and for how it worked( or didn't- for KathyN son?? Seems like it caused severe fatigue- but did pans symptoms go away?- improve significantly? )

can you elaborate on cellcept and why you think that may be the key for you? Ive never heard of this drug. Thanks! and I'm glad to hear you may finally have found somehting that is helping.

My sons had acute infection because he was picking at his gums,on top of the inflammation all along his gum line. The acute infection is why they gave him the antibiotics. First he had a deep cleaning- planing - that the periodontist recommended, in conjunction with nasty tasting antibiotic rinse. When that didn't work- they decided to use some antibiotics. He was on Doxy(and others- ) during this time, and they took him off those in favor of only penicillin. Plain, old penicillin. I think it was 10 days. It worked for the acute infection, but the overall inflammation persisted on and off for a year afterward., He still occasionally will pick at them- according to him once every two weeks or so, when they feel weird. There is gum inflammation connection with many things- immunological disorders, MS, diseases, heart issues, etc. google it. Sorry no definitive answers, that's was our experience.

DS has had gum issues, none currently, but persisted on and off for over a year. If they are infected, you will most likely need to stop your current antibiotics and out on penicillin. Bacteria in the mouth are different. Aerobic vs anaerobic- and they respond only to the correct type of antibiotic. We tried all the mouth swish stuff- didn't help. You may try gum with Xylitol - not sure it helps but my kid liked getting gum! Also- I think the biggest help was vitamin D3. We realized that DSs levels were dropping, and he started high dose d3- - and his gums seemed to resolved within 3 - 4 weeks. I didn't start the HD d3 because of gum issues but when there seemed to be a correlation (takes a few weeks for the D3 to go up in blood) I researched and found a number of articles and studies on gum Heath and D3. Good luck!

They don't talk about SC in the results any more. They mention SC in a 3 page document explaining the disorder, but not the fact that the SC sera was found to be much higher. They have a green( unlikely) yellow(likely ) and Red ( highly likely) bar chart - hard to see where the actual cut offs even are. But- for Cam K looked like 120-185 puts you in the likely zone, and above 185 in the highly likely- however- then there is a separate bar that has a combined "likely hood"- that combines all the anti neuronals and cam k- cam k is HIGHLy weighted. But for example, my son had one anti n at the high end of norm, and others elevated but closer to norm. Only his cam k was really high- and in the combined scale, he was still in the "highly likely" range. It looks like adjusted his ck down 5points or so.

So it appears they made an error with the verbal reporting correct? From the actual numbers with ranges you have above, your child tests negative for MycoP - which is great! But odd that they would not have had the actual results from the lab on hand. I've been at this for many years with over 13 doctors, never gotten a verbal from the lab- from the so or yes, but the labs have always given written report to the doctor. But then you mention very high strep titers. Was that in a separate thread? I would imagine frequent strep throat, or chronic would be enough to get tonsils removed, so you should start tracking that. I recommend asking for a copy of you child's records, and as you go along, ask for results of every test so you can build your own tracking, and you are ready with all relavant information if you switch doctors, or consult with a specialist. I always get my labs ASAP now- before speaking with the doctor. You have a right to them leagly, and I don't like to waste my time and money for a doctor to simply tell me some results that may be all normal. Additionally, you can do some of your own research on the results, and have some really good questions and ideas for your doctor when you do have a meeting to go over the results. Best of luck- and if your strep is high- you may want to post those. I have seen. Number of people have success with Azith, as well as other antibiotics- Esspeciasly Augmentin XR. My son never had high strep titers - he had mycoP, which we dis iced 2 years into pandas treatment, while on Azith. For my son, the Azith workeed initially, for several montah, but then it was like it did nothing- although we kept taking it. He was on 500 day for years ( sometimes we we t down to 250- but he is over 120 lbs) .

In Brain on Fire, a book about a young woman with NMDA encephalitis ( where rouge antibodies to a specific receptor on neuronal tissue get through the BBB and attack the brain- usually after an illness and sometimes assiciared with ovarian cancer) the doctor and author describe "getting better in reverse order if symptoms". I like Dr Ks - turning back the pages annalogy better! And- this disorder is also treated with IVIG. Many similarities to pandas.

I deleted a bunch if stuff- and sent you a PM EAMom. I think it will work now- even though all the conversations are still there- they just say deleted next to them now... Thanks for letting me know. I've not looked in there since site was redone.

You need to read Stephen Bruhners Healing Lyme coinfections- mycoplasma and bartonella. It was phenomenal. Good luck.

We just did this test again. This was the 3rd time. First time, cam k 176, very high Lysoganglioside.(5x median), boarder line but normal D1 and D2. That was 3 years ago- and what I needed to see for me to be comfortable with flying halfway cross country to do IVIG. Second time, 4 mos post IVIG, camK 130, so very close to normal, most issues had resolved. 9 mos after that a couple of more severeve symptoms had returned, so we did another IVIG. Helpful, but not as impact full as first IVIG. No Cunningham's tests done then- I think lab was closed. Fast toward a couple years, finding MycoP after 2nd IVIG possible Lyme and lots of antibiotics for that. His symptoms have changed a lot in the past year. No longer tics- prior to first IViG he looked like Tourette's. and he no longer has extreme exacerbation a with every sniffle(he would add 5 or 6 categories if symptoms bed wetting,,new OCD stuff, insomnia, nightmares, age regressions,etc) does not do that anymore. BUT his major OCD thing and general irritability are just getting progressively worse. Some worsening with illness and stress, but nothing like before. So- I now need to ask myself if this is what we are left with after years if it, or is some immune issue- is he still making antibodies to his own brain, in which case I want him to have another IVIG. And if not- we might go to Florida for 3 week intensive CBT program- which I am dreading the pain that would cause entire family, but we are willing to try anything that might work. Cam K was 215. Lysoganglioside -now normal ( and that is the antineronal linked to Tics, which makes sense) and D 1 was on the line for high, the exact cut off number. Other two in normal range. So I'm glad I did the test (and not the CBT- because I don't think it would work, and would have been very painful for him- and me since I am his trigger). We are now pursuing another IVIG. This time will do the 2.0 dose, his previous 2 were at 1.5, and will do steroids for few days before/after due to extreme side effects he had last 2 times. It looks like his mycoP is moving in the right direction. So wish us luck. I really hope that he's finally in a place where it will "stick", and he's also now been doing a much of immune regulating supplements based upon MTHFR mutations, really low D, and a couple other things, I hope will support him better. Ideally I would have liked more time to see of the methylation stuff, immune regulation supplements, Vit d and just being MycoP free would be enough to turn it around, but I don't feel we have the luxury to wait and see. But as far as this test goes- I think it's invaluable. If I could get results in a few days rather than 6 weeks, I would wait, to see if it was trending downward- same way I tracked his MycoP titer. Hopefully someday they will get to that point. For now, I'm just so glad it exists to help guide us. I think when Dr C publishes her next round if papers associated with these tests, more docs and more if us will be able to look at the numbers and see the value in the tests. The biggest fault they have at the moment is that her original studies had very small groups. But after years and thousands of tests later she opened the lab- so I'm betting her next papers will put an end to any arguments about these tests. I don't think she would open a lab if her years if data didn't support it.

It's a new test. At some point I can see all the doctors and patients that are considering IVIG requiring it. Dr K devised his own test- give your kids steroids to see if they react to halting the immune response. I'd much rather give them a test to se if their immune system is creating high amounts of autoantibodies, then giving them a powerful drug. Not everybody has PANS and pandas that have the symptoms, and strep is so incredibly common, it's found in a very high percentage of normal, non sick, non pandas kids when studies have been done of large communities. A strep titer is not a very specific measure of anything. Something like 20 percent of the kids in any classroom will throat culture positive for strep in the winter months. The test can tell you if your child will very likely respond to IVIG (and steroids). And possibly other immune modulating treatments. It also like a screening test for infection. If your child is high, and has not had strep- start looking, because they probably have another infection and or low immune response, and than needs to be addressed, in addition to any pandas treatment. Even if your child had strep- strep s SOOO common- it does not mean they don't also have an underlying infection or immune issue. I'm of the opinion that they probably do. We need to move beyond looking at just strep. Look at the immune system, like all the other autoimmune diseases.

We re-ran the test though LabCorp last Friday and got results today. I've learned a couple things about the testing I thought I'd share with any of you concerned with tracking mycoplasma. Use a Lab that gives you an absolute number for IgG, no matter how high it goes - like LabCorp. Once your number gets over 5 from Quest - they just tell you it is great than 5.0. My son's was 11. (something). Positive is over .9 (so I was thinking it was 5. something - ha ha) we called the lab to find the actual number. But it turns out that is not that helpful either - because you cannot translate from one unit of measure to the other. So -stick with one lab. AND I just had to share that my son's number went DOWN!! :Dafter several months off Doxy! Now, granted, some of the the decline in the titer probably came when he was on the the Doxy, but not too much because we had it tested only 2 or 3?) weeks before I took him off. It's down to 1724. Still high - but at its highest it was 2980. It was 2405 the last time it was tested before coming off Doxy. That was March 9th. And I know he was completely off Doxy in April. So, I'm ecstatic. Not 100% sure - but looks like the methyfolate supplements, and Vit D3, and EcGG (Green coffee extract - regulates cell function) - there are a handful of other things - but those 3 are what he has had the most of lately, have helped ALOT. Maybe even more than the antibiotics ever did. Only time will tell if it keeps heading in the right direct off antibiotics. His pandas stuff has not, unfortunately, improved. So we are considering another IVIG soon, but Im happy that we may have cleared a problematic infection - and I'm hoping that if we do another IVIG his improvements will be long lasting (like, forever, please?!) As for your question EAMom - a long, long time. My son was on and off (sun sensitivity/trying other things) for about 18 months. His "off' periods were fairly long - 4 months last summer, several weeks here and there when we tried some other antibiotics. I'm about 30% into Buhner's book...many herbs, which I know nothing about - the section I'm at seems to indicate her REALLY like Cordyceps - in high does - as a medicinal food. I think for mycop he recommends 6-9 grams a day. He recommends the powered/dried to mix into water or juice. Get this - its a fungus (yuck) that grows on an insect (yuckier). They used to eat the whole bugs in Chinese medicine. Now they grow it in vats or on rice (he likes the Vat grown). He also supports using antibiotics - especially in conjunction with the herbs (as long as you make sure no interactions (rare) He has a traditional western medical background, from a family FULL of doctors - and even a relative that was the surgeon general. His website and the book cover don't give you a full view on his back ground. I thought he was WAY out there for me, but knowing where he came from, makes me feel a little better about trying herbal remedies.

ask for gaumunex. I attended a immune deficiency conference - and the attendess - that were both Primary immune deficient and secondary immune deficient adults - mentioned that gaumunex has a reputation as being easier to tolerate. Most of these folk have been taking IVIG for many years. DS had gaumunex first time - he had about 2 days of the migranine and nauseas, and it was bad. BUT the second IVIG he had Gammaguard - and it lasted for 2 FULL WEEKS - if I didn't wake him in the middle of the night to give him advil (this was 10 days after the IVIG - I I thought it might be safe to sleep through the night ) he woke up vomiting with a migraine (and once that starts it hard to get in front of the pain) You can also ask for prednisone before and after - which we had a 2 pills after each time (second time didn't help much, I think he threw them up). Good luck and let us know if it helps.