nevergiveup Posted September 7, 2010 Report Share Posted September 7, 2010 I am very interested in the bartonellas since we have outdoor cats. Is this the same as toxoplasma, which by the way, was found to have elevated titers for TS kids. I cannot remember the exact study, but one medical journal several years ago showed elevated toxoplasma titers in tourette children.Thanks KeithandElizabet! I also want to add that I know that Dr. J often uses IGENEX for lyme and babesia. Specifically, he orders the Babesia Fish test. And then he uses Specialty Labs for Bartonella. I am not sure why he uses a different lab.... maybe one of his patients can chime in here. Elizabeth Link to comment Share on other sites More sharing options...
philamom Posted September 7, 2010 Report Share Posted September 7, 2010 She was getting every 8 weeks, but - recall her moms last post stating she will be getting highdose evry four weeks now. I will look it up in the history. SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks I think she posted every 4 weeks than re-posted she meant to say 8 weeks. I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted September 7, 2010 Report Share Posted September 7, 2010 Nevergiveup: Toxoplasmosis has also been implicated with schizophrenia. I had elevated toxoplasmosis levels with my first pregnancy. My daughter does not have bipolar or schizophrenia, but here is an interesting article about the connection between toxoplasmosis and mental illness: http://www.sciencedaily.com/releases/2009/03/090311085151.htm] Link to comment Share on other sites More sharing options...
nevergiveup Posted September 7, 2010 Report Share Posted September 7, 2010 Momofgirls, Did u ever see any improvement with ivig? My dd has definate signs of improvement with ivig, she says she feels great after ivig. Her ocd disappears and so do tics temporarily, they reappear approx. 15 days post ivig. So should I assume ivig works and she just needs a higher dose or is it not working. Did u see dramatic decline with ivig? Just trying to understand how the kids with lyme react to ivig. Link to comment Share on other sites More sharing options...
lyme_mom Posted September 7, 2010 Report Share Posted September 7, 2010 Okay..sorry..but, why is IGENEX the gold standrad in Lyme testing? Anyone got any reason/data to prove they are better then the rest? The reason the Igenex test is better than the tests done by other labs (namely the ones covered by insurance) is that Igenex tests for multiple strains of lyme and Igenex tests for two antibodies to lyme, numbers 31 and 34, which are considered highly specific for lyme. The other tests do not test for bands 31 and 34. This has something to do with the lyme vaccine that failed in 2001. They thought we would all have gotten the vaccine (which was based on one or two of these bands) so they left these bands out b/c we would all have shown up positive for 31 and 34 after the vaccine. They canned the vaccine and never updated the tests to include 31 and 34. Clongen Labs in Gaithersburg MD is also considered a good lab for lyme testing. Link to comment Share on other sites More sharing options...
nevergiveup Posted September 7, 2010 Report Share Posted September 7, 2010 Philmom, On aug 10th, there was a post asking how Lauren Johnson was doing? However no history exists on this thread, and she has no history in latitudes, which I can totally understand since she is using her daughters REAL name on the forum. So... Since u are a close personal friend I will default to what u know about her dd's treatments. I must have misread, I just remember the four weeks and thought wow that's a lot of ivig. Maybe she mistyped it and meant 8. Link to comment Share on other sites More sharing options...
momofgirls Posted September 7, 2010 Report Share Posted September 7, 2010 Nevergiveup: It was didfficult to tell with the monthly. We started last year this time with high dose augmentin and a long steroid burst. Two weeks in we saw dramatic improvement. Once off the steroids symptoms returned but not as bad so we moved forward with ivig (low dose). I would see improvement but each month we did ivig things would get bumpy again. After 4 months I knew something wasn't right. I pushed our doctor to try the higher dose and decided to wait per Dr K's advice. Things were tough after that ivig but really settled out after a couple months. At 3 months post I felt she was really healing with few symptoms remaining. Then we were hit with the positive lyme test. I had ordered it just to make sure. I kick myself now for the steroid use in the beginning but we just didn't know. The prior lyme screens through Quest were all negative with just a positive 41 band. I don't know for sure why the low dose monthly didn't work for us but guess it was producing a constant herx and perhaps the dose was not high enough to address the autoimmune portion. One last thing...I've considered my daughter mild for a while and again was shocked she had lyme. Had never pulled a tick off of her. I would advise all parents to run the igenex test to be sure. By the way her C3D was very high and ANA mildly elevated. Momofgirls, Did u ever see any improvement with ivig? My dd has definate signs of improvement with ivig, she says she feels great after ivig. Her ocd disappears and so do tics temporarily, they reappear approx. 15 days post ivig. So should I assume ivig works and she just needs a higher dose or is it not working. Did u see dramatic decline with ivig? Just trying to understand how the kids with lyme react to ivig. Link to comment Share on other sites More sharing options...
philamom Posted September 7, 2010 Report Share Posted September 7, 2010 Philmom, On aug 10th, there was a post asking how Lauren Johnson was doing? However no history exists on this thread, and she has no history in latitudes, which I can totally understand since she is using her daughters REAL name on the forum. So... Since u are a close personal friend I will default to what u know about her dd's treatments. I must have misread, I just remember the four weeks and thought wow that's a lot of ivig. Maybe she mistyped it and meant 8. LOL--It would be a pleasure if Lauren's mom considered me a close personal friend, but truth be said, my daughter just had an infusion at the same time as her daughter. Lauren was kind enough to help my daughter get through a very tough experience by giving her special attention and playing games with her all day long (Thanks Lauren...she still mentions you!!!). I remember when LaurenJohnsonsMom posted her daughter was getting high dose IVIG every 4 weeks...and posted again the next day that she meant 8 weeks. Anyhow, I find this topic very interesting, as I am battling with the decision to do another ivig in 2 weeks for my daughter, who is diagnosed with lyme. Her immunologist feels it would help her fight off other infections she'll encounter at school. It's still up in the air! Link to comment Share on other sites More sharing options...
lyme_mom Posted September 7, 2010 Report Share Posted September 7, 2010 We also had no history of a tick bite (except one on my daughter) but we had Lyme. Link to comment Share on other sites More sharing options...
justinekno Posted September 7, 2010 Report Share Posted September 7, 2010 Ah, that's my backyard! I was living near Lyme when bitten by a tick some years ago. How classic is that?!! Let's just say my husband wants to be very cautious how we tell his father. Also my DH grew up near Hartford, CT.... wooded back yard, creek and deer all the time, worked as a camp counselor, etc. Link to comment Share on other sites More sharing options...
justinekno Posted September 7, 2010 Report Share Posted September 7, 2010 I have to think that if bands 31 & 34 were so important that they were going to be part of a new vaccine, then they must be pretty significant to Lyme. The reason the Igenex test is better than the tests done by other labs (namely the ones covered by insurance) is that Igenex tests for multiple strains of lyme and Igenex tests for two antibodies to lyme, numbers 31 and 34, which are considered highly specific for lyme. The other tests do not test for bands 31 and 34. This has something to do with the lyme vaccine that failed in 2001. They thought we would all have gotten the vaccine (which was based on one or two of these bands) so they left these bands out b/c we would all have shown up positive for 31 and 34 after the vaccine. They canned the vaccine and never updated the tests to include 31 and 34. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted September 7, 2010 Report Share Posted September 7, 2010 We also had no history of a tick bite (except one on my daughter) but we had Lyme. How does one contract lyme disease without a tick bite being involved? Link to comment Share on other sites More sharing options...
momofgirls Posted September 7, 2010 Report Share Posted September 7, 2010 Some of these ticks are the size of a poppy seed and can be easily missed especially if attached in the scalp. Link to comment Share on other sites More sharing options...
faith Posted September 7, 2010 Report Share Posted September 7, 2010 know Dr. Jones/Horowitz uses other labs as well as Igenex.... Speciality Labs is one 'I believe'. Our LLMD has a strong connect to Igenex and you must sign a waiver acknowledging he sits on their board . BUT, our LLMD does use other labs Metametrix, LBT and others that I am not familiar with yet for mycoplasma testing. I see now. thanks..... Link to comment Share on other sites More sharing options...
faith Posted September 7, 2010 Report Share Posted September 7, 2010 (edited) double post... Edited September 7, 2010 by faith Link to comment Share on other sites More sharing options...
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