adkmom Posted August 24, 2011 Report Share Posted August 24, 2011 Hey everyone, I haven't been on the forum in a while. Just a quick update on our DS5 (logged into this at age 4) our ds5 has been diagnosed with Lyme, Pandas and clinically with Bartonella. (lots of aggression, anger, foot pain, ADHD stuff) He's been on Bactrim, Omnicef and Azithro for the past 5 months. We just increased the dose of Azith and Omnicef and also added in an ADHD med (reluctantly, but things were getting dangerous without it!.. with all his impulsivity) He's been improving but the ADHD symptoms were not letting up, lots of angry outbursts (calling me horrible names!) and an unrelenting motor tic. A few things we discovered on our last Lyme/Pandas doc visits: DS5 had tested negative on the allergy test (pricking in the arm). But recent blood test showed he had allergies..highest should be 50. He tested 780! Doc said the prick test is often not very accurate...not sure, why we did it at all. But okay. So, allergies can trigger any of the PANDAS symptoms (sorry, forgot I'm on the Lyme board!), allergies acting just like an infection would. So, ds5 started daily allergy meds to see if symptoms would improve. (can't tell yet) Also, we brought a Guinnea Pig into the house...and the motor tic soared! His behaviors went from 80% improvement to 10% improvement. Felt like we were back to square one! A long shot...our GREAT doc kept asking what was different in the house..new pet? I mentioned the GP. And he said, take it out. We did and within 1 day...ds5 tic had subsided...back in the house, it started up. Sooo, just FYI...those allergies DO impact their symtpoms. The GP is now on a farm!! Hope some of this rambling info. helps out. thanks guys. Darlene Link to comment Share on other sites More sharing options...
lismom Posted August 25, 2011 Report Share Posted August 25, 2011 Your so right. My son's tics are very minimal now but probably wouldn't have any if it weren't for allergies. Cats, dogs, grass, trees, weeds... The problem is with lyme and bart the immune system is effected so that it doesn't know how to use meds or shots. We have to wait untill lyme and bart are gone (well for the most part gone) to treat allergies. I was told the immune system is overtaxed and/or not functioning at a degree to know what to do correctly. But if meds work for you, which I hope they do, lets us know, would like to know your finding. Kathy p.s. I don't know if you remember talking, but my son is doing well at this time! Link to comment Share on other sites More sharing options...
adkmom Posted August 25, 2011 Author Report Share Posted August 25, 2011 I remember. Kathy and Liam, right? So glad he's doing better. Will he be going back to school? And any sports? Last time we talked, he was still spending most of his time on the couch I'm sorry, can't recall if I followed up with you about sharing Liam's story? Unfortnately, I couldn't get it into the Buffalo papers. Also can't recall if I shared info about the Children's Lyme Disease Network? (I'm brain dead lately) We're working on a website now and have several moms who want to be involved somehow. Please consider visiting and liking us (and Liam too) on our Facebook page, every family who's been impacted by this helps in furthering our cause...(Funders are watching how many Fans we have in deciding whether or not to support the Network) Anyways, allergy meds are stopped, cause it's making NO difference. The tic is still there. Keep in touch. Liam is lucky to have such a mom! Darlene Your so right. My son's tics are very minimal now but probably wouldn't have any if it weren't for allergies. Cats, dogs, grass, trees, weeds... The problem is with lyme and bart the immune system is effected so that it doesn't know how to use meds or shots. We have to wait untill lyme and bart are gone (well for the most part gone) to treat allergies. I was told the immune system is overtaxed and/or not functioning at a degree to know what to do correctly. But if meds work for you, which I hope they do, lets us know, would like to know your finding. Kathy p.s. I don't know if you remember talking, but my son is doing well at this time! Link to comment Share on other sites More sharing options...
philamom Posted August 25, 2011 Report Share Posted August 25, 2011 My daughter had numerous sinus infections growing up so they were always looking for the underlying cause. In between sinus infections though she was fine and didn't show any signs of allergies. Anyway, she had three scratch tests (back & arm) at different ages which were normal. Then at age five they did an intra-dermal needle test which came up positive for dust mites and maybe positive for cats, hard to tell because she was moving too much at that point. So I've been washing her sheets, blankets, stuffy's, exc., weekly in hot water. A little over a year ago I had Dr. B run a blood test to check for allergies to dust mites & cats, which came back negative. One doctor said the scratch test was better, another said the RAST blood test was better. I wish I knew which was more reliable, as I would like to get another cat (had 2 before) and am considering having daughter tested again. Oh, and I finally bought her a comforter last week and noticing some slight agitation...hmmm. Link to comment Share on other sites More sharing options...
lismom Posted August 25, 2011 Report Share Posted August 25, 2011 I remember. Kathy and Liam, right? So glad he's doing better. Will he be going back to school? And any sports? Last time we talked, he was still spending most of his time on the couch I'm sorry, can't recall if I followed up with you about sharing Liam's story? Unfortnately, I couldn't get it into the Buffalo papers. Also can't recall if I shared info about the Children's Lyme Disease Network? (I'm brain dead lately) We're working on a website now and have several moms who want to be involved somehow. Please consider visiting and liking us (and Liam too) on our Facebook page, every family who's been impacted by this helps in furthering our cause...(Funders are watching how many Fans we have in deciding whether or not to support the Network) Anyways, allergy meds are stopped, cause it's making NO difference. The tic is still there. Keep in touch. Liam is lucky to have such a mom! Darlene Yes its Liam. He turned a corner just a couple weeks ago. It feels like the heavens parted. Unbelievable, but he's gone from the couch to trying out for JV volleyball and made it. This is someone that wasn't able to do anything physical, including gym for two years. Yes his tics are there but much more mild. I'd say about 80% better. Hopefully down the road they will go. kathy Your so right. My son's tics are very minimal now but probably wouldn't have any if it weren't for allergies. Cats, dogs, grass, trees, weeds... The problem is with lyme and bart the immune system is effected so that it doesn't know how to use meds or shots. We have to wait untill lyme and bart are gone (well for the most part gone) to treat allergies. I was told the immune system is overtaxed and/or not functioning at a degree to know what to do correctly. But if meds work for you, which I hope they do, lets us know, would like to know your finding. Kathy p.s. I don't know if you remember talking, but my son is doing well at this time! Link to comment Share on other sites More sharing options...
JuliaFaith Posted August 25, 2011 Report Share Posted August 25, 2011 Just a thought, but have you looked at mold issues in your home? The mold can cause lots of allergy action. With mold remediation my allergies/asthma have almost gone away completely. A lot to think about. Link to comment Share on other sites More sharing options...
adkmom Posted August 25, 2011 Author Report Share Posted August 25, 2011 Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds Wonder why. sorry, bit cynical tonight. Link to comment Share on other sites More sharing options...
lismom Posted August 26, 2011 Report Share Posted August 26, 2011 Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds Wonder why. sorry, bit cynical tonight. Yes, I was close to using valium a couple months ago! Is the tic the worst symptom right now? how are the other issues he was having. We were in a perpetual herx for over 16 weeks! Are you using something for cysts? Link to comment Share on other sites More sharing options...
Familyof5 Posted August 30, 2011 Report Share Posted August 30, 2011 Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds Wonder why. sorry, bit cynical tonight. Want to add to Julia's suggestion to look into mold. My daughter sounds a lot like yours. We had allergies with the hampster that we recently brought in. Tics went through the roof...back to a bad place I thought we'd never see again. Got rid of hampster, tics subsided. Also, my daughter too had bad horrible sinus infections...every year, with no "allergies" except for cats and dust mites also! Since moving out of moldy home, no more sinus infections. Although still dealing with tics and hyper sensitivity to mold, severity of all symptoms has diminished greatly. Link to comment Share on other sites More sharing options...
adkmom Posted September 3, 2011 Author Report Share Posted September 3, 2011 Hey there, We were using Tindamax but took a break for a while to figure out what other meds were doing. Still on all 3 antibiotics, Metadate for AdHD. We were having a good 2 weeks, ADHD much better, but now the darn tics are starting up...the throat clearing has begun again...you start to wonder, are we just suppose to ignore it??? It's only about 2 hrs day but usually other behaviors come with it, irritabilit, aggression, anger...he's grunting now! So, i'm guessing my day will be rough. Anyone notice, the tic preceding the behavioral symptoms? Darlene Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds Wonder why. sorry, bit cynical tonight. Yes, I was close to using valium a couple months ago! Is the tic the worst symptom right now? how are the other issues he was having. We were in a perpetual herx for over 16 weeks! Are you using something for cysts? Link to comment Share on other sites More sharing options...
adkmom Posted September 3, 2011 Author Report Share Posted September 3, 2011 Thanks for sharing. Bizarre about the Guinnea Pig. I'll have to share your story with Dr. B, since he was just guessing that was triggering the tics...but of course, now the tic is staring and no pig in the house! what the heck?? He doesn't have sinus infections, always is okay on his checkups with Dr. B. Very odd..we're renting a home that the owner says has a $40K air purification system in it (like in the hospitals), so you'd think we couldn't be breathing cleaner air in here!! But now, got dust mites, and Guinnea Pig concerns! What is Next??? Oh yes, just started on blood pressure meds Wonder why. sorry, bit cynical tonight. Want to add to Julia's suggestion to look into mold. My daughter sounds a lot like yours. We had allergies with the hampster that we recently brought in. Tics went through the roof...back to a bad place I thought we'd never see again. Got rid of hampster, tics subsided. Also, my daughter too had bad horrible sinus infections...every year, with no "allergies" except for cats and dust mites also! Since moving out of moldy home, no more sinus infections. Although still dealing with tics and hyper sensitivity to mold, severity of all symptoms has diminished greatly. Link to comment Share on other sites More sharing options...
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