Lyme and PANDAS!

[laure]

Well, now we have it: So many of you told us to suspect lyme,(thank you for that!) and the Igenex western blot came back positive! This after the quest blood work western blot was negative! No co-infections though, thank God. (babesia, bartonella all negative) Only OCD symptoms, so it was a bit of a surprise to me. Even shocked. But we do spend a fair amount of time in Connecticut. Dr. B put her back on the Augmentin that gave her the CRAZIES 4 weeks ago, along with the zith she has been on, for 8 - 12 weeks. We will likely suffer through some herxing. The good news is that her antiDnase B titers are down to 327 from 779 in July, so Dr B thinks the strep is not chronic and the zith is repairing the blood brain barrier. Much, much better in school, and sports, and musical instruments going well too. OCD is still the same though, with rages that turn on a dime, not lasting long luckily, and oppositional behavior that is also brief but frequent. We weren't planning on seeing a LLMD, as Dr. B thinks this is a very easy case to treat with no co-infections. Any other wisdom or advice? You are all the best, thank you all for the suggestions. I truly believed saving the $800 for the Igenex tests was OK after doing Quest and getting negative results - how wrong I was!

[philamom]

Hi Laure,

I'm glad you're getting some answers! You might still want to consider seeing an llmd. In July, my daughter had a positive Igenex Western Blot IGM (many bands), but negative IGG and negative co-infection panel. It looked like a relatively new infection on paper. We went to an llmd who did further testing, she came back positive for Bartonella thru Specialty lab and positive for Rocky Mountain Spotted Fever thru Quest. Her treatment was changed. In my dd's case, the positive IGM Western Blot with Igenex is most likely showing a persisting, chronic infection (been around for a while). Hopefully, with the correct treatment the positive IGM will convert to IGG.

Edited December 2, 2010 by philamom

[lyme_mom]

I am glad you are getting to the bottom of your child's illness. Lyme is the great imitator and it can present as purely psychological symptoms. I would recommend seeing a llmd because these diseases are diagnosed based on symptoms and negative coinfection results do not necessarily mean there are no coinfections. I would not rely on any doctor to treat myself or my kids for Lyme whonis not an experienced Lyme specialist with a long track record of treating tick borne Infections. Why waste your time experimenting with someone who is not a Lyme expert? We used two llmds because we wanted to be sure we were not missing anything and each of our llmds has unique talents that helped us immensely.My kids were tested by dr jones repeatedly for coinfections because you can turn positive with treatment. My kids never had a positive coinfection result but were treated for suspected bartonella and babesia and they got well. That's really all that matters is that the symptoms go away and the llmds are experts at treating multiple infections. Also we are using the high dose probiotics that Wendy and elizabeth recommend and I wish we had used them all along. They r 50 billion capsules from custom probiotics. During our Lyme treatment we were only taking 4billion. I saw a post yesterday that said dr L doesn't think pandas kids need to worry about yeast which I am shocked to hear. That doesn't make any sense to me . When u r on lots of antibiotics u need to take probiotics to rebuild the gut bacteria. The nutritionist Wendy and Elizabeth use also recommends taking bentonite liquid to detox the gut. My llmd said this is safeand is a good detox agent. We r doing this now to heal our guts so we don't get sick again. We are all well now:-) and no longer on antibiotics. Good luck!

[laure]

Great info, thank you! I have real hope! Any ideas for a lyme doc near Syracuse, NY? Of course, we will go to the best if we can get in, but local would be wonderful...or is it best to just head to the big names straight away? Also, did you continue to work with PANDAS docs? Because Dd9 had a real strep history, and lots of undiagnosed, asymptomatic strep over the years, and I am afraid not to continue that route as well... My brother had lyme and made a full recovery, so I know how serious it is, and how important to treat completely. He used the Rhinebeck, NY group, but it was a small fortune.

Incidentally, don't I need a doc's script to get custom probiotics? Also, what kind of meds were your kids on and for how long? Just trying to get my head wrapped around this issue. THANKS for all of the support, I have more hope now than I have in a long time...like all of you I would do absolutely anything to get my child back, and will leave no stone unturned!

[lyme_mom]

I am glad you are getting to the bottom of your child's illness. Lyme is the great imitator and it can present as purely psychological symptoms. I would recommend seeing a llmd because these diseases are diagnosed based on symptoms and negative coinfection results do not necessarily mean there are no coinfections. I would not rely on any doctor to treat myself or my kids for Lyme whonis not an experienced Lyme specialist with a long track record of treating tick borne Infections. Why waste your time experimenting with someone who is not a Lyme expert? We used two llmds because we wanted to be sure we were not missing anything and each of our llmds has unique talents that helped us immensely.My kids were tested by dr jones repeatedly for coinfections because you can turn positive with treatment. My kids never had a positive coinfection result but were treated for suspected bartonella and babesia and they got well. That's really all that matters is that the symptoms go away and the llmds are experts at treating multiple infections. Also we are using the high dose probiotics that Wendy and elizabeth recommend and I wish we had used them all along. They r 50 billion capsules from custom probiotics. During our Lyme treatment we were only taking 4billion. I saw a post yesterday that said dr L doesn't think pandas kids need to worry about yeast which I am shocked to hear. That doesn't make any sense to me . When u r on lots of antibiotics u need to take probiotics to rebuild the gut bacteria. The nutritionist Wendy and Elizabeth use also recommends taking bentonite liquid to detox the gut. My llmd said this is safeand is a good detox agent. We r doing this now to heal our guts so we don't get sick again. We are all well now:-) and no longer on antibiotics. Good luck!