Kimflow

Has anyone used the zyto as adjuntive therapy or to guide therapy? Would you share your thoughts on how it worked for your situation? Thanks.

IN early days of autism when he was very sick, my son too was extremely bothered by crying babies. Covering of ears for other noises too but particularly upset by crying babies. This would come and go and I always associated it with inflamation/detox. Once we found something to halt inflammation, this symptom improved. So I would wonder if the toxins liberated from lyme/bartonella treatment for 3 months have increased inflammation? Kind of like my friend who started eating healthy and juicing and he caused a detox crisis in himself becoming very sick. I like the items suggeted for detox by prior poster. For now, we are only using charcoal, epsoms salts, liver life. I want to ask abot Cholestyramine ?sp?.

Posted this also on PANDAS board. We see doc. on Monday. One of the things I will ask about is LDN. Would you all share your experiences with LDN with regard to PANDAS/Lyme? Do you find the pill or cream better for your situation and why? At what time do you give and what dose did you start at and end at? Were there any side effects initially? What were your positives? Thanks.

We see doc. on Monday. One of the things I will ask about is LDN. Would you all share your experiences with LDN with regard to PANDAS/LYME? Do you find the pill or cream better for your situation and why? At what time do you give and what dose did you start at and end at? Were there any side effects initially? What were your positives? Thanks.

Mary, I get goosebumps reading your post. Our world too "refell" apart in March of this year. It first fell apart when he was diagnosed with autism. Your analogy of this being a rollercoaster...you hit the nail on the head. Just prepare yourself for it as this will be the way it is. Just accept that when you are in the valley, you will go up again and when you are on the peak, enjoy it as you may very well see another valley. Now, when I was in your position with pediatricians who didn't know how to treat PANDAS, here is what I did: Read this forum every day to begin to educate yourself so that you can then educate the doctors that you may have to go through until you get to a PANDAS specialist. Immediately get on a wait list for one of the top 5 PANDAS doctors. If you can find their names, PM me and I'll give them to you. Maybe get on two of their wait lists and get on cancellation lists. You'll go to whatever one you can get into first. You can always add another top PANDAS doc later Next, post on this forum what state you are in and ask for members to suggest name of good pediatrician/MD who are aware that many PANDAS cases require more than 10 days antibiotics. Consider taking her back to pediatrian or maybe even an urgent care doc who is new to the situation and have her reswabbed. As for rapid and regular throat culture and ask for sensitivity. When I was struggling to find help, I ended up taking him back to be reswabbed base on return of symptoms..the urgent care thought I was crazy but when the swab came back positive, he suddenly took notice that I knew what I was talking about. So another option is to take her to doc to get her reswabbed again. Keep looking as long as it takes to find a doctor who will help. I ended up driving 5 hours to another PANDAS doc in New York before I could get in to see Dr. L. Every doctor I saw gave me one additional thing in my arsenal to fight the PANDAS. And yes, the NIH study may be good option for you ...someone posted a link I think. The key is you need help NOW. I hope some of that helps. I can tell you just as they told me when I first posted here....you are going to find help for your daughter and your family.

IgG **34 IND **41 ++ IgM 18 ++ **39 IND **41 + These results are labled as negative per both igenex and cdc guidelines. Igenex suggests retesting several weeks. Is it labeled negative because of the IND on the IgM 39. the way I read it, you only have to have 2 lyme specific bands on the IgM testing to be positive. And also to me, IND still means that the lyme specific bands were present as far as I am concernred. finally, I read that you have to keep retesting and then eventually more bands will continue to appear. Does that happen even if you are taking antibiotics? Also, what does it mean to have both IgG and IgM? Does that mean that you had an old infection that went latent and then it was activated? I see LLMD on Monday. Thanks for answering "20 questions". Thanks.

Hi, How could one have positives in both IgG and IgM categories. IgG represents older infection and IgM represents recent infection. This confuses me but I am sure many of you have already asked this question of your docs. thanks.

Hi, I read this thread on a yahoo group. The poster said that many do not know that some PANDAS kids do not tolerate Lactobacillus rhamnosus. Isn't this Culturelle? So we have been using it 1-2 times a day to avoid clostridia from the antibiotics. Have any of you found that your children do not tolerate the Culturelle. I know that some kids do not tolerate the Sach. Boulardii. If you have, what probiotics do you use? None. Thanks.

Hi, After PANDAS diagnosis with multiple antibiotics working for 7 days and then failing, labcorp positive for 41 and 66, CD 57 of 24, igenex pending, tonsillectomy causing another bad flare, IVIG #1 9 day ago, PANDAS still here. Now ready to go back and focus on Lyme treatment as it seems that Lyme may be the root cause of much of the issues....need to figure out what drug combination is going to work. All the "cillins" in the beginning showed initial improvement for 7 days so we know that the "cillins" work to a degree. Editing to add in the Keflex also worked for 7 days so I believe that is a cephalosporin. Afer all those failures though, Dr. L prescribed 3 weeks of clindamycin followed by 2 weeks of rifampin. This seemed to really take down the pandas symptoms by the end of the rifampin. However, was it just the 2 1/2 months of various antibiotics that it finally settled and not totally related to that being a magic combination??? Tonsiillectomy caused new flare. Rifampin did not seem to help this time at all. Then we went to augmentin which immediately stopped in it's tracks one ocd anxiety pattern so we know that augmentin works for sure to some degree. I also know that zithromax while it did not prevent strep reinfection, it did seem to modulate immune system. The current augmentin/clindamycin is not working well. He cannot take minocycline/tetracycline due to forming teeth. So in summary, we have zithromax and augmentin are for sure helpful. So now what..... Maybe to keep augmentin as it clearly is a winner, put back in the zithromax. If you add the 3rd antibiotic, what comes to mind? mayb Batrim? I have a friend whose son is doing well on Augmentin, Minocycline and Bactrim. Also, we were supposed to rotate in 1 week of alinia per LLMD but that was postponed as we did the IVIG to try and stop the PANDAS. So I guess we could go back to alinia rotation plan as well as when is the right time to address biofilms? After some of the lyme load has been cleared? Please if you can provide any thoughts/experiences, I would appreciate it. We see LLMD Monday. Thanks.

My thoughts exactly....you CAN DO THIS!. Having felt overwhelmed myself many times, we are sometimes always able to rise to the next high alert. Hang in there.

After multiple kinds of antibiotics, some improvement which I am grateful for but still not enough to make life easier, recommended tonsillectomy that caused massive flare we are still in, more antibiotics, IVIG a week ago, we are not yet seeing improvements in chorea, anxiety,ocd, etc. I am trying to remain calm. :-) IN the meantime, I think now is the time to try the pecid as elelvated histamines have not been addressed yet and I would hope that lowering histamines would help with anxiety. I plan to give at bedtime to avoid digestion issues. Was thinking I might start at half dose first night and then work up if tolerated. Then we can work on methylation issues to help with bringing those histamines down naturally. Any thoughts? Thanks, Kim

mdmom, First, sorry that the insurance company is making it more difficult. I am not sure it would be of any extra help to you, but if you yahoo or google search "IVIG, codes, Dr. B" or similar searches, you will find that alot of specific ACN latitude posts actually come up with information regarding codes used, policies, IVIG,etc. How do I know? I just printed a few out the other day. I do it this way as I have not yet mastered using this forum's search option. I just went and looked at my papers....the one thread with diagnosis codes was under poster GraceUnderPressure. June 20 2011 I hope all works out for your son and your family. K

I too have heard that Greenstone may not be as effective and to avoid it. Also, zithromax treats intracellular strep. I do not know what kind of strep amoxicillin treats. Hopefully others will respond.

We had the first IVIG yesterday. Now I feel like : NOW WHAT DO I DO? Just sit and wait........I am so used to the past several months beging the amazing race to find help, that now to sit still and wait to see if it helps feels strange. We continue on two antibiotics, two antifungals. Waiting on igenex results in about 14 days or less. How long did it take to get your igenex results back? Do I pursue better methylation? Do I pursue other options like l tryptophan or inositol? I won't know then if it was the IVIG that helped or the supplements???? Thanks for your thoughts on what you all did.

well, this makes me nervous....as ours is 1 gm per kilogram and we have pandas/syndehams chorea.

For those of you who have had IVIG, what was the dose/kg administered.

Has anyone else on this forum received repeated IVIG through United Health Care??? If so, what was the diagnosis?

Hugs2day, Maybe there will be a silver lining in this cloud. First, I agree with Mayzoo.....see if you can find something that will cover the azithromycin (probably not) ....or maybe something more successful will be give the liquid zith in a syringe and offer a bribe syringe to chase it with ....something really tasty to him. The silver lining.....alot of the liquid drugs have aspartame in them. Maybe his body is telling him that it makes him feel sick now. So if all else fails, he can learn to swallow pills. I started with a small tiny pill in thin liquid pureed food and gradually worked up. You might be able to start with small piece of food and gradually work up so he gets used to swallowing....then fade in the pill. Good luck, K PS when I taught my daughter how to swallow pills.....I used smallest to learn on and also remember, capsules float so head tilt a little forward and tablets/pills slide down better if you tilt up a little. She was able to understand this....my son was not able to get this concept.

Hi, I was wondering if any of you have been advised to stop certain autoimmune therapies when starting to receive IVIG? For example, Low Dose Naltrexone, Porcine Whipworm (TSO), etc? If they have told you to stop, would you share the reason? Thanks.

ko's mom, Having just come through a tonsillectomy/adenoidectomy that was recommended.....please be aware that it can cause a flare. He did receive IV antibiotics during procedure but it did not seem to help as day 4 after tonsillectomy, we started a flare that is still ongoing and moderate..chorea exacerbated, anxiety, etc. etc. still 5 weeks postop. IVIG is scheduled so I am praying so much that will help. I assume they will culture his tonsils with Minnesota doc. Are you seeing Dr. H at Georgetown? Possibly you could ask him about benefit of infusing IV antibiotics as other parents have told you about flares afterwards. K

Bigmighty, Thanks for the water reminder. Any other tips......Ibuprofen and maybe Benadryl to prevent vomiting. Don't worry...this weekend, I will write my list of things to remember to do...much like I did for his tonsillectomy. The list keeps me on track during what could be stressful time and also it makes me feel like I have some control :-). I can't say it enough times....the tonsillectomy really messed us up....(despite IV antibiotics intraop and also postop) .....maybe in the long run, it will have helped as there was still bunches of alpha strep and many other bacteria in there despite months of different antibiotics. Maybe it would serve as more proof for insurance company too that he has issues in case they balk at more IVIG or something like that. I just feel lucky that we HAVE that IVIG to follow up with. Maybe we are just getting worn out but he seems worse this tonsillectomy flare than he did the original flare. Our family is feeling the stress. K

We too were struggling with the steroids/no steroids question. The info. I got back from others when I posted my question was that some use it, some don't. Lyme IgM bands 41 and 66 only came back positiv. Then we did CD 57 which was 24 highly suggestive of TBI. He already has autism and pandas that is unresponsive to abx. Then I read that CD 57 in young children is unreliable so on to get Igenex test done tomorrow for further comfirmation. Still we are lined up for IVIG next week for Pandas, synde. chorea. We have had some abx treatment for pandas/lyme and we have to help his immune system calm. He came back some from teh initial pandas strep throat episode but then the tonsillectomy has really screwed us up. Immune system in worse flare. I think based on info. I have received through my searches and posts, we will be getting ordered iv steroid to prevent the possible headache. Was told that the 2 doses of steroids were not enough to flare Lyme. Sometimes no matter how much you research, it always feels like a roll of the dice. I have to say I am not that comforted now that I see the one poster say Dr. B said IVIG will BRING pandasocd symptoms. back.

LLM, Would you have time to give me your thoughts on the following: Inositol 5 htp St. Johns wort Currently we are using 5 htp and St. Johns wort. Looking to see if there might be a better solution for anxiety/OCD. have not tried Inositol. have not tried tryptophan. Thanks.

wonderful to hear.

Oh my gosh,,,,,,I just have to say that assistant principal is a real burr under the saddle already. It also doesn't sound like she is going to be very understanding of PANsPANDAS issues. You could be the first one to educate them but as I mentioned before, after 6 years in public school that was for the most part very supportive, I am exhausted by all the meetings,red tape, rules and regulations that make no sense for my son, intense communications necessary to make them understand his anxiety/ocd. I wish you luck......Maybe you should switch to talking to hte principal as right now the assistant principal has given clear indications she is only going to increase your stress.