lfran

I know this is Parkinson's and not Lyme/Pandas/tics etc, but I thought this video was amazing. Take 2 minutes and watch it, and let me know what you think. http://www.wellnessh...t.asp?id=339544

Take two minutes and watch this and see what you think. Unbelievable. http://www.wellnesshealth.com/content.asp?id=339544

Where do you live? Someone may know a doctor or other practitioner in your area.

Which antibiotics is he on? There is some medical literature out there that shows that Amoxicillin can cause intrusive thoughts and other psychiatric issues. I am 99% certain that that is a factor in our family. If your son is on amoxicillin or an amoxicillin-family abx, especially at a high dose or for a long time, you might want to look into this. I know it sounds crazy, and it's not common, but it's out there (and it's even listed in the possible side effects in some of the websites I researched).

I just wanted to add, they talk alot about sensitivity and specificity. My understanding is, the higher the specificity, the less likely of a false positive, which is my concern at this time. Ditto on the thanks

Here you go. I was interested in them because DS10 was mainly 58+ (plus we captured the antigen in his urine). Also positive for bartonella. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/ Ditto on the thanks

The Europeans consider Band 58 to be quite significant, and you have a double positive on that. I have posted links to the European studies recently. I thought they were very informative. ' Ditto on the thanks

What about following up with antibody testing to see if it has receded? We also stopped rifampin (after 5 months) due to liver issue, but a simultaneous antibody test showed that he was just about negative (he'd been positive and was now on the upper end of normal). He actually did great for the 10 days off all meds. A little bit of anxiety came back after almost two weeks. He's been off rifampin now for about 3 weeks and seems to be doing okay. Any thoughts you can send my way? Update: I felt a bit guilty about firing off such a "blunt" response to your question. I edited it (above) and just want to encourage you to discuss another antibiotic to substitute for the Rifampin that you needed to stop. (see above) I "panicked" when I originally read your question. We just tried a 2 day break from Rifampin (to try "pulse therapy") and my son's Bartonella symptoms surged back very quickly (and he has been on Rifampin for almost 6 months now). It takes a long time to treat Bartonella. The organisms replicate very quickly so "pulling up short" on antibiotic treatment raises the possibility that a resistant strain will emerge. I do not mean to be scary - just want to get the info. out to you. I hope that you are able to sort things out.

That is wonderful and amazing. So happy to hear it. Gives hope to those of us who are still struggling. You should try to get that published as a case report in the medical literature, so that mainstream medicine will start to take notice. Do you have any journal entries, videos, etc of that terrible time, to use as information for a case report? Can I ask for clarification? You say she was diagnosed almost a year ago and has finished 5 months of treatment. Were you also treating for the first 7 months, but ramped it up at the end? Or was it a different combination of meds? My DS10 started treatment almost 7 months ago and the big change is that the anxiety and defiance are gone or almost gone. But tics and compulsions come and go in their same, frustrating, life-impairing cycle.

I am so sorry to hear this. I remember how excited you were to be going there. This disease truly stinks.

Thanks! I will do that. (Hope he won't think I'm a kook!) Hi Ifran, Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!

Tamistwins -- Here's this odd thing, but I would like to ask this researcher and/or ask you to forward this questions. DS10 has Lyme and may have PANDAS. All members of our family (including myself) have elevated DNASE and ASO. I also have tonsil crypts (crevices in my tonsils, actually pretty common) which accumulate tonsil stones (also pretty common) that are disgusting and which I have been told are bacteria, etc that accumulate in the crypts and which I cough up every so often (sorry for the TMI!) (They look and smell awful). What I have always wondered is...could strep be hiding in these crypts and would testing these tonsil stones (also called tonsiliths) be useful??? If so, I could easily send him some!!! Would you want to ask him this, or should I? What do you-all think?

We were told that rifampin was the drug of choice for bartonella. DS10's titres went from positive to almost negative in 4 months on rifampin. You have to monitor liver functions, though, and it turns their urine and their tears orange.

What is rtms? Thx.

My DS10 tested with postive antibodies for Bartonella and a positive urine DOT blot test for lyme (Igenex). His Western blot for Lyme was not positive by Igenex or CDC standards, but I researched a lot and he would have been diagnosed with a postive Western blot in both Europe and China, based on his reactive bands. He has no joint pain or other physical symptoms. His main symptoms are chronic motor tics, high anxiety, and minor compulsions. Treatment wth abx, including for bartonella, has made the anxiety mostly go away (bart is associated with anxiety). Still hoping for the tics and compulsions to fade with continued treatment. Have you seen an LLMD or done the Igenex or other testing? There is a new test that looks for the spirochetes in the blood, but you have to be off abx for a month and it will miss 20% of the positive cases. Still, it sounds good to have proof, you know?

I second that. Dr. T is great for emergencies and getting people started. I would contact him ASAP.

So sorry to hear this. You probably know this, but hyperthryroidism can cause significant weight loss even with a good appetite. This happened to me when too much meds for my hypOthyroidism put me into a hypERthyroid state.

THANK YOU!

Here's another study, looking at percentages for single band Western Blots, this time from China. http://www.ncbi.nlm.nih.gov/pubmed/21112481 Here are the relevant bands. You can see that p58 is included (with a specificity of 99.4 for IgG, now we're looking at 0.6% false positive rate for the presence of a single instance of these bands (for IgG, they don't include p41). RESULTS: The following interpretation criteria were recommended: for IgG, at least one band of P83/100, P58, P39, P30, OspC, P17, P66, and OspA; for IgM, at least one band of P83/100, P58, OspA, P30, OspC, P17 or P41. In addition, syphilis, leptospirosis and other related diseases should be excluded when the positive band is P41 in IgM. For IgG criteria, the sensitivity is 73.2%, the specificity is 99.4% and Youden index is 0.726; for IgM criteria, the sensitivity is 50.6%, the specificity is 93.1% and Youden index is 0.437.

Actually, some doctors think 58 is very important and it is very indicative of Lyme in Europe. I have posted about this recently, but here is a link to the info re: the European labs. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/

Thanks! Just curious -- is your DS taking it once per day or twice per day? I had read somewhere that rifampin works best at night (can't imagine why). Also, how often are you doing liver monitoring? We are doing it about once a month now -- is that what you are doing also?

Hi all. Just wanted to post that after 3.5 months of rifampin, DS10's bartonella titres (IgG) went down from 160 to 40. <40 is considered negative. So...maybe just a little more treatment? Or do any of you suggest alternative laboratories to confirm? Both tests were done via Igenex. Thanks!

Yes, I had to read it over several times, but what I got from it was that European labs use different bands to diagnose a positive Lyme diagnosis than do either the CDC or Igenex. There are different strains of Lyme that show different bands more frequently, and then the authors put together "best" rules that could be adopted as a standard, based on running their samples against all the rules that were used by the different European labs. Table 10 was my favorite table, because it showed that p58 and p41 together give a positive Lyme diagnosis with only an 8% false positive rate from Lab A or a 2% false positive rate from Lab B, with a 6% false positive rate by the authors' suggested European Rule 5 or 2. (I am only concerned about false positives at this point, because we are already treating my son, so I want to make sure that he does indeed have Lyme). But the false negatives were 20% or less for these rules, for those who are interested in that aspect. I want to make sure I really understand this article, because it is important to me. Are there specific areas that you found problematic? If so, do you mind sharing? Thanks!

Can anyone tell me how much it tends to cost to have a tonsillectomy (either with or without insurance)? And does blue cross tend to cover it for PANDAS kids? I have the option to switch to BC soon, but not sure that I want to, so wondering how much T&A costs out-of-pocket if I can't get my HMO to approve.

DS10 has lyme and bartonella (confirmed by antibodies). Has been on rifampin for bart almost 4 months. Will be getting repeat bartonella antibody test results back next week. But, how does one decide to stop rifampin? Is it based on resolution of symptoms (which may overlap with Lyme? Or when antibodies decrease? Or...?) Would love to hear other people's stories before our results come back. Thanks.