JuliaFaith

Dr. yesterday agreed to the Igenx testing. We are doing one first and then the other in a few weeks after he is off abx for at least a week (just went through a PANDAS exacerbation). Setting up appts. with 2 lyme dr. just to see how soon we can get in one. On the first call, they made an appt. 2 weeks later just to talk to the office manager! The other is a ND so will probably not be covered under insurance. Will look to see how long the Igenx testing takes. I believe it appeared on another thread. There are some amazing people on this forum! Thank you for your kind words and best wishes. Julia

We have had no results from the 2 or maybe 3 steroid bursts tried already. Just worsening of symptoms the last few days. It is great that it works for some kids. What is 'long-term' use? Would 1 month be considered long-term? Your story when you were pregnant reminds me of something else. I always wondered if the meds. I was on for 2 mos. bed-bound while pregnant had anything to do with the PANDAS... So sorry you had to go thru that during your pregnancy.

This is all very interesting. My son had 2 steroid bursts (5 day) did nothing for the first 3 days and made him feel worse the last 2 days (both times). Talked to someone in Portland on the Oregonlyme site and he said generally the same thing. Thank you, again, for giving me the website. We talked for quite some time and he was very knowledgable. This definitely makes me want to follow up with the lyme before any more steroids. We have to wait a couple of weeks to do the test but that will give me time to talk to his current dr. and set up appt with llmd. Supposed to see a Rheumatologist next week because of a rash he broke out with on elbows, tops of hands, knees, tops of feet. Rash is completely gone now of course. The blood test and MRI we did for this came back neg. Just hope for some answers soon as many on this site.

Thank you for getting this info. I bet Igenex could answer your IVIG/PCR question. We have not done an IVIG. Best wishes.

Sorry if I do not know this, but why are steroids bad for lyme? I am thinking of doing the lyme testing, while Dr. is thinking of doing a 1-month steriod treatment. Thank you for any information.

Thank you for all of this information. Yes, I do remember your prior suggestions. I did look at the Oregon Lyme support group but their web page looks pretty new and is a little short on some information still. They have tabs for it but nothing there as of yet. I did get names of some LLMD's just today in our area (Seattle) so that is a relief. We have a great Dr. but she is just not knowledgable in lyme disease. DS is on abx right now for another week then he has to be off of them for another week after that before doing the tests. Not sure if we should keep him on the abx or not. His Dr. took him off yesterday because of the migraine and put him back on them today. She mentioned a 'healing crisis'. Best wishes for you and your family. Julia

We have done the mycoplasma 3 times and every time it has been neg. Not sure if the C3d has been done so will ask our Dr. Thank you so much for your information. Julia

Thank you for your insight. We have the igenx testing box here but have to wait 1 week after finishing current abx before we can do the test. Did find some local lyme dr. on the lyme forum thank goodness. Do you usually stop taking the abx when the herzing starts or continue? He is taking 500 mg of Biaxen 2xday. Really appreciate your input!

Thank you for the info. I was under the impression that the 5080 included the Complete lyme panels. We are going to look at the use of abx before doing the test since ds has been on them for 5 days. We are taking him off of them now since his symptoms seem to be getting worse rather than better. Will see Dr. Keller on Thurs. morning to sign off on the Igenex tests. Hopefully, the lab on the 1st floor can do the blood draw. Best luck with your kids and their current illnesses. We are thinking about you. Oh, and Babesia FISH apparently is a test for the RNA (genetic material) of Babesia.

We are in all the same places! Thank you Thank you Thank you for this information. Is Dr. T (Triffileti?). Will wait to hear from you. Best wishes for your children!

We want to do lyme testing of my son, but my dr. does not know much about lyme. Anyone know what tests to order through Igenex? Anyone know of a dr. in the Seattle area? DS12 has been sick for 8 mos. with very little relief. He has been diagnosed with PANDAS but all other tests have come back neg. and he has not gotten better. Recent reaction to Biaxen was horrible with extreme symptoms so want to try Igenex since we have very little to go on. Thank you for any ideas.

Not sure what to do now. My son has been in treatment for a cough he acquired a week ago and is on 500mg 2xday of Biaxen and his PANDAS symptoms are worse than they have ever been. He has high anxiety, sleep problems, trouble swallowing, shaky feeling, As of yesterday, he now has a migraine (he has only had 1 before). Have read some threads on here that talk about Babesia and Spirochette as possibilities for this reaction. DS was not on abx before this but had continuing headache, muscle ache, stomache ache symptoms of which his Dr. has been trying to problem-solve. She has us going to a Rheumatologist next. Wondering if it could be Lyme? Any ideas?

Did you try Epsom Salts in the bath? It really helps! Many times trouble sleeping has to do with magnesium deficiency, so replenishing magnesium via a hot Epsom Salt baths is very relaxing. When I am restless and can't sleep, I take a couple of calcium/magnesium pills and it makes me settle down very quickly. So you could try that as a supplement as well. It works best if you break it up during the day, rather than taking all of it at once, as you can't really assimilate a large those. This is very interesting since we do use this in the bath for his aching muscles. Never really knew why. We are trying this as I write. Thank you so much. Best wishes - Julia

Thank you for all your ideas. Wrote them in my journal for future reference. Best wishes for health for all of you.

Hi Dut: My dh got a spray from Whole Foods from Source Naturals called "NutraSpray Melatonin". One spray in the mouth is 1.5 mg (time release). Will try tonight and let you know how it works.

My ds12 is on his second cough (virus/bacteria) since getting diagnosed. The first one, we were able to get abx with a day and he recouperated fairly well. This time, he did not get the abx for 2 days and his PANDA symptoms have really ramped up and sleeping is his major anxiety trigger right now. He asked me to see if any of you have any ideas that we have not tried. We have tried reading to him, hot baths, movies, talking, and papaya. He is on abx, naproxen, and naturopathic/homeopathic vitamins. Any help would be appreciated!

My ds12 had a year of getting sick every few weeks and his last illness was a bad cough that turned into stomach flu symptoms, then a tic. Several Dr. later, he was diagnosed with PANDAS (this last April). He has been sick twice since then (home-schooling) and both times with a bad cough. We are waiting for Micopasma tests results right now. His PANDAS symptoms have ramped up quite a bit this time vs. last time because it took us two days to get Abx prescription (last time had them within 24 hours). He has also had headache, muscle aches, stomach aches for 7 mos. now and we are still trying to problem=solve those symptoms. Anyway, his dr. thinks that micoplasma might be his trigger. Both times he was tested before, his symptoms had ramped down quite a bit and it had been at least 2 weeks since his cough began, whereas, this time testing was done within 3 days. All his tests for strep and everything else have come back ok (except Cunningham test). So he did get every illness that went by b/4 his initial exacerbation but not sure now, except for the micoplasma. Hope this answers your question(s). Best wishes, Julia

Just started an on-line public school with my ds12 and it seems to work great so far. Just dealing with his school and teachers was so stressful that this seems to be working better until he is well again. It is K12.com and is offered in some states and is free (they do have pay courses as well). You can go part time or full time and start/stop when you want. It is my understanding that for the high school about 75% of the work is on-line (compared to my son's which is 25%). There is a teacher for your geographical area that oversees progress, answers questions etc. Best wishes for some answers in the near future.

Thank you for all your replies. It helps confirm that we are going in the right direction. Best wishes. Julia

My ds12 has also been getting rashes in the sun. He has been on abx some of the time and we thought that might be it. Although, reading the material that comes with some of the abx it says that patients do not get rashes with the meds. His rashes have appeared differently every time which is really strange. They started a few years b/4 he was diagnosed with PANDAS. It also depends on where the rash is appearing. My son's last rash appeared after being in the sun, but just appeared on his elbows, knees, hands, and feet which is significant in some auto-immune disorders. We are scheduled to see a rheumatologist in another 3 weeks. Also, his health has not improved much after being sick for 7 mos. so this is just another piece of the puzzle we are trying to solve. Will be interesting to hear what dr. says on Thursday.

This is probably what his dr. is thinking at this point. His handwriting/spelling is not so good and OCD may be there a bit and he does still have a slight tic with his throat. So these sound like PANDAS. Have just ordered the Igenx kit and we have rheumatologist appt. in about 3 weeks. So it looks like we have to just keep testing and hope to find something that tells us what is going on, in addition to PANDAS. All this waiting makes me want to do something. Thank you for your input EAMom and best wishes for you and your family.

Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx? Thank you for your input. I wish you the best. See abx tried at EA's post. We have not found any infections at all (except a yeast infection in his private area which does not want to go away-it has been swabbed and tested too). We are probably waiting until we can see the rheumotologist until any more treatment is done. It looks like there is a missing piece of the puzzle here that just has not been found yet. I did order (by phone)the Igenx test again today since we have not done that yet (have tested for lyme locally). Originally it was thought that his trigger was micoplasma but now suspecting flu because of rash... Never got better after a bad cough. It is great that all the tests have come back looking good, but frustrating because son has not had any relief. Most on this forum know about that. Will just keeping testing... Thank you. Julia

Thank you for your input. Guess we have a ways to go to figure out the puzzle. Best wishes for the future.

Good advice - thank you.