Fixit Posted November 18, 2010 Report Posted November 18, 2010 i don't know if you talked about this topic or not... and i want to clear all hurdles before i procede with a big gun..that is why i had tonsils out in sept... but we did igenex in april this year..41+ 39ind.... per all the panda docs he does not have lymes...i don't think he does either... i did call a lyme doc acouple of weeks ago...she said 39 could be something but wasn't jumping gun... she is in nc...so i she said to see if i could invesitgate further... so spoke with dan doc..last wednesday..and was going to order dot blot. also saw ent same day to folloup on his TA..had doc check him out well becasue it seemed like we were ramping... to my shagrin..i know this seems odd to say..he checks out fine..(i wanted something specific to fight) thurs ds7 comes off the bus crying his throat hurst...go to ped..he has strep...so that might explain ds10 i've been giving ds ole...but with this strep exposure and ramping i'm ready to back to azith ..at least for a while per prior conversation the test requires azith and daily urine tests....so i'm trying to hold off but i called doc tuesday to see where it was..said on it's way..called 2 hours ago..had to reorder, or it was back ordered or something....????? i wanted to know if i needed could i start azith...told me to call igenex i call igenex ...lady at front couldn't help me..it was a littl hard to understand her..and the person who knows won't be in till monday??? i can't tell if we are trending better again or not....yesterday morning he asked to do nasal rinse(he does not like it too much).....a small green gob came out...and little black specs, like pepper but more elongated..like fiber..but they were all equal in size..later last night said he feels hot..no temp...but i don't know if i trust my thermom...and i had to check on a friend and as i walk out says his throat hurt... came home at 10-10"30...asked dh any further update on throat...and he told his dad he felt fine.... maybe i should post some of this on the Pan board... anyway, going to try to call doc again... does anyone know about this test and the protocal and abx.... i want to use azith if i feel he still needs it
Betty04 Posted November 18, 2010 Report Posted November 18, 2010 We just did the urine dot blot under the guidance of a LLMD. My son is 5 and was prescribed Azith, Alinia and Ceftin for 5 days with urine collections on days 2,4,and 6. His samples were negative on days 2 and 4 but positive on day 6. This was considered positive for Lyme by 2 LLMDs for my son. Prior to seeing a LLMD, my DAN was going to run this test with only one day for urine collection and only on one antibiotic, so I would advise doing this with the guidance of a LLMD as both doctors said it was not uncommon to only have one sample positive. PM me if you want more information.
sf_mom Posted November 18, 2010 Report Posted November 18, 2010 Have you checked your son for co-infections yet? Here is what Dr. Ann Corson Pediatric Lyme Specialist states in her most recent presentation. A positive Western Blot need only show one species-specific band to demonstrate exposure to BB therefore confirming a clinical diangosis of Lyme Disease. These species-specific band are: 18, 23-25, 31, 34, 39, 83-93 Since your son's results are band 41 positive and band 39 IND it is recommended (both double starred bands) on Igenex results that you pursue alternative or additional testing in 4 to 6 weeks. I concur with Betty04s recommendation to pursue a good LLMD to help with alternative testing that is based on your son's symptom presentation. -Wendy
Fixit Posted November 19, 2010 Author Report Posted November 19, 2010 i don't know if you talked about this topic or not... and i want to clear all hurdles before i procede with a big gun..that is why i had tonsils out in sept... but we did igenex in april this year..41+ 39ind.... per all the panda docs he does not have lymes...i don't think he does either... i did call a lyme doc acouple of weeks ago...she said 39 could be something but wasn't jumping gun... she is in nc...so i she said to see if i could invesitgate further... so spoke with dan doc..last wednesday..and was going to order dot blot. also saw ent same day to folloup on his TA..had doc check him out well becasue it seemed like we were ramping... to my shagrin..i know this seems odd to say..he checks out fine..(i wanted something specific to fight) thurs ds7 comes off the bus crying his throat hurst...go to ped..he has strep...so that might explain ds10 i've been giving ds ole...but with this strep exposure and ramping i'm ready to back to azith ..at least for a while per prior conversation the test requires azith and daily urine tests....so i'm trying to hold off but i called doc tuesday to see where it was..said on it's way..called 2 hours ago..had to reorder, or it was back ordered or something....????? i wanted to know if i needed could i start azith...told me to call igenex i call igenex ...lady at front couldn't help me..it was a littl hard to understand her..and the person who knows won't be in till monday??? i can't tell if we are trending better again or not....yesterday morning he asked to do nasal rinse(he does not like it too much).....a small green gob came out...and little black specs, like pepper but more elongated..like fiber..but they were all equal in size..later last night said he feels hot..no temp...but i don't know if i trust my thermom...and i had to check on a friend and as i walk out says his throat hurt... came home at 10-10"30...asked dh any further update on throat...and he told his dad he felt fine.... maybe i should post some of this on the Pan board... anyway, going to try to call doc again... does anyone know about this test and the protocal and abx.... i want to use azith if i feel he still needs it LLmd didn't seem too concerned on the phone..and when i mentioned pandas she said..yes that is quite the hot topic...but in her defense she had a patient just walk in.... i called the dan office again..he was out...so they gave me email....i asked if i could start azith... he said yes...so i thought i'd try to wait it out till package came...as igenex lady said instructions would be in box but.....i am soooo sad....my boy has started full body movements, has to stop when he walks..when he walks he has to jump and kick himself..flap arms, screech........a few seconds later...10 whipping head nods, snort, nod....the list goes on.... i had to start zith tonight...and give next dose in morning... as he sits there sort of...and dh and i dispute the condition....i said ds...maybe we should just put you in a bubble...and he asked what that was...explained..he said no...(this is all light hearted)...i said you could play x-box as much as you want...he seemed intrigued.......he asked what about school...i said no school..you'll be in a bubble...he said....No Way...not doing it!!!!!! Can their preciousness..make you feel even worse about their conditoin.....!!! He loves school....the kids have never been mean...YET!! i know couple times when some have asked him stop doing what he is doing...the teachers have very dicreetly spoken with the childre in the hallway... we are pretty close to our worst point...i think i will know soon if we are there...this slide has been coming...and the last week has been dramatic i am sorry to lay this on all of you.....i am sorry.....why can't i figure this out....why am i not as smart as all of you? ok..got to regroup.....done crying did i screw up the test then...should i call a different lymd doc tomorrow...i live in GA..this one is in NC ...is there one you recommend...? i'll travel anywhere...but i don't want to wait...go to do this now... also retyping this,,,just lost it... i put ds on list for pex 4-5 weeks ago...then 2 weeks later he seemed to making an incredible recovery...so put on hold.. called back about 2 weeks ago to put back on list..he is 6th...now we are looking at Jan....i don't have any kind words for myself right now....i should have just signed up in aug when i was there.....but i thought we were so close to remission(via 28 day taper),that we can do this...i i haven't been following over here on lyme board....has it been decided or somewhat confirmed that you can get lymes other than in utero or tick bite....i really don't think i have it..and i don't think ds does, but i am not excluding that we are northerns originally... can it be passed in sperm...i would be more likely to beleive that dh has it... has anyone come up with lymes that didn't get it in utero or tick bite.....is it possible to get from someone else via sharing food or something like that....if that is possible and ds has weaken systemthan then i do think ds could have it
Ozimum Posted November 19, 2010 Report Posted November 19, 2010 Dear Fixit, I hate what this does to us as mothers...the doubt, the guilt, the frustration, the hurt, not knowing which way to go, constantly questioning, analysing, watching, going crazy with worry, panicking... You want the best for your child...I know I'd walk over hot coals if it would help. You know you are doing everything you can - now breathe! Please - seek some care for yourself too! You WILL get through this.
Betty04 Posted November 19, 2010 Report Posted November 19, 2010 Fixit, Don't know if this is helpful to you but my son was already on Azith when we did the dot blot and the llmd just added alinia and ceftin on for the testing. So starting azith will not affect doing the dot blot.
Fixit Posted November 19, 2010 Author Report Posted November 19, 2010 Fixit, Don't know if this is helpful to you but my son was already on Azith when we did the dot blot and the llmd just added alinia and ceftin on for the testing. So starting azith will not affect doing the dot blot. yes..thank you...i want to take the test as soon as it comes in... he took second azitht this moringing.... i will try to call the llmd i spoke to before to see if she has a dosage for the other 2 abx.... what dosage was used for your ds..what did he weigh... do you have llmd to suggest.. Ozi...thanks for the support...it is a new day...hitting the research and calling docs as soon as the opening bell .. 9am for docs office...9:30 for the stock market...
PacificMama Posted November 19, 2010 Report Posted November 19, 2010 (edited) Fixit, I think there are some people on this lyme board in your area, so you could do a separate post asking for llmd suggestions. I might be remembering some people going to one in SC? But also, see this link for how to find an llmd: http://www.latitudes.org/forums/index.php?showtopic=10804&view=findpost&p=91387 You do have lyme in your area. But also, do you travel to more endemic states? And yes, it can be passed congenitally (although I've never heard via father mentioned at all). It doesn't matter at this point. He is showing positive to a very specific borrelia band, and so he should definitely be evaluated by a llmd. The symptoms you describe would definitely fall in the lyme category. See also "helpful links" folder above -- it has an article regarding "evaluating your child for tick borne diseases". Please read and see if any of it makes sense. Good luck. Edited November 19, 2010 by PacificMama
Fixit Posted November 19, 2010 Author Report Posted November 19, 2010 Fixit, I think there are some people on this lyme board in your area, so you could do a separate post asking for llmd suggestions. I might be remembering some people going to one in SC? But also, see this link for how to find an llmd: http://www.latitudes.org/forums/index.php?showtopic=10804&view=findpost&p=91387 You do have lyme in your area. But also, do you travel to more endemic states? And yes, it can be passed congenitally (although I've never heard via father mentioned at all). It doesn't matter at this point. He is showing positive to a very specific borrelia band, and so he should definitely be evaluated by a llmd. The symptoms you describe would definitely fall in the lyme category. See also "helpful links" folder above -- it has an article regarding "evaluating your child for tick borne diseases". Please read and see if any of it makes sense. Good luck. thanks pacific... well i am an origianl jersey girl...but nothing like those seen on TV...Lord help me!! More princeton type with a little of the buck stops here, or so i imagine.. dh hails from VA, we lived in pa 4 years of ds life and we FREquent the north, alot of family up there!!
PacificMama Posted November 19, 2010 Report Posted November 19, 2010 Hi Fixit, Hopefully you will get some doctor referrals from your other post. But also, please try the other methods listed in the link as well (for finding llmd). Get on several wait lists if you have to. And if you have family you can stay with up north, you could see if you can get into a doc there sooner for now. I'm not familiar with your child's whole history. And so I'm not sure why you seem hesitant that lyme is a possibility. You have the exposure -- your son lived in the most lyme endemic state (PA), and you visit some of the most endemic areas where your relatives live. He has a test with a positive to a very borrelia specific band, and he is presenting with symptoms in line with lyme. And the fact that he also has a strep problem does not discount that he may well indeed be harboring lyme as his main underlying issue. With this test result, along with symptoms and exposure, it seems likely that a llmd would begin appropriate abx treatment that could make all the difference. But of course, he must be evaluated properly (as I nor no one could say... it must be an experienced doctor). best wishes. Mary
Suzan Posted November 19, 2010 Report Posted November 19, 2010 Fixit, is the NC lyme doc Dr. B? If so, that is who we saw and we like her and she has pandas patients and understands pandas too. I find her very knowledgable if you don't find a good recommendation closer. HUGS Susan
Fixit Posted November 19, 2010 Author Report Posted November 19, 2010 Fixit, is the NC lyme doc Dr. B? If so, that is who we saw and we like her and she has pandas patients and understands pandas too. I find her very knowledgable if you don't find a good recommendation closer. HUGS Susan yes... ok i will call her right now!! should only be 5-6 hours at most..
MichaelTampa Posted November 19, 2010 Report Posted November 19, 2010 Fixit, Glad to see you have located a LLMD with knowledge of PANDAS. As PacificMama said, all the reasons to pursue it are there. That should help tremendously, both with treatment plan, and also probably give you the confidence that the doc is considering different possibilities and situations. Regarding your questions on how can a person get lyme disease, the reality right now is that this knowledge is simply not available--we don't know. Lyme has been found in every human body fluid there is--tears, blood, saliva, sex fluids, and so on. Lyme has been found in mosquitos, in birds, and it is no doubt in other animals as well. And none of this means that we know for sure you can get it transmitted in this way, we don't know that. Until the diagnostic process is MUCH MUCH better than it is now, information on how you can get it will be very far off. How can we determine how someone got it when it's not diagnosed until 40 years later? That is just the reality right now. The book Cure Unknown does give quite a bit of great information for the curious, as our minds do keep asking the questions, even if the answers are unavailable. Regarding yourself and your husband, I do hope you at least bring up that topic with the doctor. Given the unknowns of transmission, you might help yourself a lot to consider that some. Michael
Fixit Posted December 4, 2010 Author Report Posted December 4, 2010 ds 39 came up ind....and i read somewhere it is indicative of BB... what is that, Barbesia? heres' the scoop..still trying to do this lyme thing... my doc did not want to challege dot blot???? ds has been on azith for 2 weeks do to exposure of strep and ramp in symtptoms... the lyme doc i spoke with was..well..i understand their licenses are always on the line.... i just wanted a direction...what abx to try to challenge...she said none... did not want to see us till we investigated further??? how do i do that w/o guidance.... 2 other dan docs did not want to challenge test???? so on my own...i started ds on day 1 andographis and 1 inernal parasite formula....containing..cloves, black walnut hull, wormwood(which is artemisinin)which is what i read is what you want to treat barbesia,milk thistle seed extract, wasabi,enzymes.... day 2...friday i did urnine test.. then you double dosagees everyday our next test is tomorrow... going to give garlic right now... our last urine test is tuesday morning... i would like to get test done to get results, i hope before christmas?!?!?! we are on waiting list for pex..i may have waited a little longer if i had known we had more time to push doctor for abx... he is also on hd vitamin c...9g..(3-4liposomal)...just started that a couple weeks ago and read that c in general is good when treating lymes... the one bit of info the lyme doc did say was that we could do this test 10times and come up neg...still doesn't mean not lymes....we just didn't catch markers...and could well catch them the 15th time
lyme_mom Posted December 4, 2010 Report Posted December 4, 2010 (edited) I did the test when I got sick after stopping my Lyme treatment. I got a bicilpon shot that kills spirochetes and my result was positive. Edited December 5, 2010 by lyme mom
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