pollywog

My kids and I saw Dr. K (Kirkland, WA). He is an amazing genius, but his protocol is extremely complex and expensive beyond belief. We really struggled, since were treating 3 people with Lyme in the family. Getting kids with Lyme/PANS to cooperate with taking all those supplements, etc. can be very difficult...almost a full-time job and full-time paycheck.

We are in the same position right now. We're working with Dr. Frankovich at Stanford PANS clinic. My son does not have titers for Tetanus or Pneumo, even though he was vaxed. Frankovich is asking us to re-vax with the Pneumo so that we can prove immune deficiency and to get IVIG covered. We are terrified of this! Would love to hear from those of you who did and did not have flares from re-vaxing. Also, would love to hear your experience with IVIG, and were the results worth the risks? Thanks!!!

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Hello, My Lyme doctor tested me for Lyme and various other infetions, through LabCorp. I tested positive for Lyme (IgM), as well as multiple infections including Mycoplasma, EBV, Parvovirus, HHV6, etc. When I took this lab test to a mainstream infectous disease doctor, he explained that these "positives" did not indicate a current infection, rather that they were IgG antibodies, which meant that my immune system had, at one time, enountered these bugs and that this result indicated past infections (as opposed to IgM, which would indicate an acute infection). My Lyme doctor wants to start treating me for these "infections", but I would like to know what's up before I begin. Can any of you shed any light on this? Thanks! Paula

I agree, Susan. I only saw the ID doc out of curiousity...wondering what he would say about a positive on a mainstream lab test. He offered me little in terms of an explanation about why he did not feel that I really had Lyme, which left me wondering what it takes to get a lyme diagnosis from a garden variety ID doc. My case had to be reported to the state health department, for God's sake! Paula

Hello, I have two kids with PANDAS and sensory processing/self-regulatory issues, and I, myself, have symptoms of chronic fatigue/fibromyalgia. Suspecting we might have Lyme, I went to a Lyme doctor (Lyme literate), who ordered a LabCorp Western Blot (among many other tests). The results came back IgG (with one band present), and positive for IgM (with two bands present). My Lyme doc counts this as a positive and, in fact, it was reported to the state health department as positive. But when I took my results to a mainstream infectious disease doc, he told me he thought it was a false positive, even though he agreed my symptoms were consistent with Lyme. He said that my results were positive for an accute infection, but negative for a chronic or old infection, and that this didn't make sense, since my symptoms have been long term. He felt that the test results were probably the result of a cross reaction with some other bug. I called LabCorp, who said that the specificity for this test is 98.7 %, meaning that it is accurate in detecting Lyme (and not some other bug 98.7 % of the time). My question is, who should I believe? Also, if I conclude that I am positive for Lyme, can I also assume my children's issues (both breastfed) came from me? Do they have Lyme bugs? or just a residual autoimmune reaction from having had their immune systems develop in a messed up environment? Grateful for your thoughts. P.

Hi, I just wanted to add that both my kids went absolutely crazy with Enhansa. It's possible that it was die off, and that we were going to quickly, but our DAN doctor also said that Enhansa is highly phenolic, and so if your child is sensitive to phenols, you could see big negatives. I had to stop the enhansa with my two kids...too scary. Paula

Hello, I am the mother of two PANDAS kids who have responded well to treatment with a homeopathic strep remedy. I'm starting to wonder if I might be a strep carrier, and be causing issues for my kids. Yesterday, I took a dose of homeopathic strep remedy (1M), and had what I think was a healing reaction (two hours of irritability/rage). Can I assume from this that I am a carrier? Should I continue taking the strep remedy on some regular intervals? Thanks! Paula

We used it on and off for a couple years, but we never could see that it was making any difference...so we stopped. Paula

Hello, I have two children with PANDAS, and am wondering if Lyme could be the root cause. We are about to do the CD-57 NKC test, and am trying to get a better understanding of how diagnostic it is. I know that NKC levels can be altered by infections, other than Lyme (like XMRV, AIDS), so I was wondering if anyone knows why CD-57, in particular, would be low. In other words, what is the connection specifically between Lyme and this particular NKC. On previous tests, my son showed almost non-existent NKC activity, but it wasn't broken down by type of NKC. Also, my son tested negative on the Western Blot. Can I say from that, with confidence, that he does not have Lyme? Can there be false negatives with the Western Blot? We used Low Dose Naltrexone (LDN) to increase our son's NKC count with great success. Does anyone know if there has been success using LDN to improve the immune status from Lyme? Sorry for so many questions. Paula

We have been using VSL, Super Pro Bio, and just mixing in a few other ones when we can fit them in. We tried S. Boulardii a few times, and always had negative behavior reactions. I think it may be because she seems to react to yeast in any form. It's a good idea, though, maybe we should try it again. Our DAN doctor also suggested Earth Dragon. Have you heard of this? It's actually a ground up worm product that is supposed to help regulate the immune system. We have been considering TSO, which is another worm therapy that has bee highly effective, but very expensive. If you know or have any experience with these, I would love to hear your thoughts. Paula

Hello, My PANDAS 4 year old has been on Amoxicillan for a few months. Although it has helped her, it was not a total success. A few days ago, she came down with a fever, which turned out to be strep. Since she got a strep infection while on Amoxicillan, we know that the Amox just wasn't really cutting it. Our pediatrician, who has a good deal of experience with PANDAS, wants to put her on Augmentin, but our DAN doctor is concerned about her gut health, and has seen many kids have serious regressions on Augmentin due to the disruption in gut flora. He suggested Ceftin (Cefuroxime) which he thought would do a good job without as much negative impact on the gut flora. Since gut flora has been a major problem for our daughter, I do think this is worthy of consideration. Our DAN doctor said that we could start with the Augmentin, but if she developed diarrhea, we should switch to Ceftin. We started Augmentin last night, and this morning she had diarrhea. I'm concerned about sticking with the Augmentin since I know that poor gut flora conditions can actually worsen autoimmune issues, like PANDAS. Have any of you had success with Ceftin instead of Augmentin? Thanks! Paula