Fixit Posted January 6, 2011 Report Posted January 6, 2011 A little back up…. Ds was ramping early Nov..thought he had strep..no…next day ds8(my new panda)comes off bus crying about throat….get him abx..ds8 at that point was still fine till Dec…we will get to him on another post as I am some how holding it together..and I think I am compartmentalizing (sp) is how I am doing it, but need support as my new fears for him rise…But my original panda is healing?! So I put ds back on aztih as strep exposure…a little dismayed..as I was still waiting for dot blot to come in.. It arrives..he’s been on aztih 250 for 2 weeks…my dan did not want to challenge the test…I figure I am spending another 3-400…I want to do something…so I got to herbal store and pickup this product there….and am kinda excited as it says it treats candida, which I think is a problem for ds…and I thought once I get it to full strength ..4 days…I will up aztih to 500…which I did http://www.google.com/products/catalog?q=internal+parasite+formula+healthforce+nutritionals&hl=en&prmd=ivns&resnum=3&wrapid=tlif12926013052151&um=1&ie=UTF-8&cid=5682337059954173445&ei=24cLTb6zIYK78ga8l-C9Dg&sa=X&oi=product_catalog_result&ct=result&resnum=1&ved=0CEEQ8wIwAA# so …he takes firs pill and I start 1 arganon pill with this protoacal..just to cover my bases.. 2nd day I do my first urine test…keep uping pills………positive 4th morning next test.and after sample(because sample if first morning urine) I up zith to 500…….positive….. 6th morning last sample……..negative….is this because I got zith up to 500 2 days ago??? My next question is….is this lyme or just some other parasite….because even though I doubt/ed lymes…I would not be surprised if he has parasites…as since I can remember..he is chewing on something…(run over pen caps he found on ground…springs from pens…shirts..eeeettttcccccc) Finaly I want to add….that ds is about 90% at this point(give or take 5%)……ever since we started the parasite thing…I thought I saw healing!!!!!! I want to add that prior to strep exposure…and ds was ramping…I started hd vit c..absorci acid and liposomal….9000mg a day..and was considering herxing at that point prior….as I am doing same and have some healing going on for me….(I think).. My dan now wants me to see a llmd…luckily one I contacted in NC hwo is integrative md and supposedly treat pandas too!??!?!?!? I will be seeing next week…and I have another apt..in 3 wks for one in MD….. I was thinking of trying the parasite formula again….or should I wait……. THANKS TO ALL…..i guess I will be poking my head around the lymes board more….and thank you if you read all of this…..
Fixit Posted January 6, 2011 Author Report Posted January 6, 2011 maybe spoke a little too soon... he was fantastic over the 2 week christmas holidays... he asked for no meds for christmas...tapered off last of abx by then and just did supplements.... started azith 250 sat 1/1/11...to get some in for school... just now..he had a few more than lateely... reherxing ?? just letting more out after school...but i just asked if he felt like the tics were coming back some..he said yah...alittle... i just read somehing here...about not usind abx..till parasites are gone..... should i take him off zith till appointment on tuesday???
MichaelTampa Posted January 6, 2011 Report Posted January 6, 2011 There are a couple/few reasons why treating parasites first makes sense. Long-term abx use can have its downside and be tough on the body. In that sense, if the patient can to wait, it's great to do a variety of other supportive things before going at the abx, because it can minimize the time you'll need to be on abx. And, if the parasites/worms really are farming and protecting the lyme, removing the farmers and other things like heavy metals and biofilm will make the abx all that much more effective. My experience also was that, I started with abx, didn't know anything about parasites/worms at the time, and abx killed a lot of things which made it easy for the parasite/worm problem to become much worse. So, parasites/worms first is just a good order. But, given that you've started abx already, I don't see that a few days or a week would necessarily make a huge difference. If you've got an appointment coming up to really figure out what makes sense, I think the bigger thing for zith and any other current treatments is, just managing the situation with symptoms and school, what will be easier. If the zith is doing okay, helping, probably better to just keep at it. If the zith is causing real problems that aren't just good-ol-fashioned-tolerable-herxing, maybe stop as they are problems that don't come with any benefit. Those are my thoughts anyway.
Fixit Posted January 6, 2011 Author Report Posted January 6, 2011 Thanks Michael.... today is day 6 back on....i might go off..as the weekend is coming up...he'll only go to school monday before a new plan... and zith can last a week in system ...so that should hold us till wednesday... also..incase you didn't cath it..my new panda ds8 tested pos..mono as of MOnday...so i have alot going on... based on the info posted...ie dot blot....is that lymes..or parasites..or both???.. my dan was shocked...as igenex was only 41+ both...and 39ind igm
sf_mom Posted January 6, 2011 Report Posted January 6, 2011 (edited) If the dot blot test is positive its Lyme. It is highly accurate test when positive they are matching up DNA (not antibodies). He might also have a parasite of bartonella or babesia along with Lyme and you will need to test for those separately. A good LLMD will get you started on the right protocol and help with proper additional testing for co-infections. You should see some real improvement in the first 6 months of treatment (minus the herx). AND, you will probably not need PEX or hdIVIG in order to see full resolution of symptoms for Lyme. Wishing you all the best and I look forward to your updates from your LLMD appointment. -Wendy Edited January 7, 2011 by SF Mom
Fixit Posted January 7, 2011 Author Report Posted January 7, 2011 Thanks Wendy....so it is lymes...jeez..louise... I may need some hand holding through the herx...I'm pretty spent!!!
Suzan Posted January 7, 2011 Report Posted January 7, 2011 Thanks Wendy....so it is lymes...jeez..louise... I may need some hand holding through the herx...I'm pretty spent!!! We'll all be there together. I'm struggling right now but one thing I've learned, for me anyway, it constantly changes so when things are bad you can know that it will change. I'm going to keep that in mind right now that I am struggling. I highly recommend, if you are not already, keeping a log of what is going on so you can look back and see the progress. It's the only way I can keep track of it all. I write 2-4 sentences several times a week (if not every day). HUGS! Susan
KeithandElizabeth Posted January 7, 2011 Report Posted January 7, 2011 Fixit: This test, from what I have read, is supposed to be very accurate. I think the most important thing is to find a good LLMD who can assess and treat potential coinfections. The herxing can be rough at times, but most people find that their children get stronger and stronger every month and begin to respond less and less to other illnesses as they heal. I think Susan's suggestion about taking notes during the journey is a great idea. Whenever I was feeling like our son was not doing well, I would look at our calender and note that overall, his monthly percentages of progression were getting higher and higher. After 6 IVIG's during the beginning of our "PANDAS" journey, our son kept relapsing and as time goes on now with lyme treatment, his relapses are less intense and his good days just get better and better (knock on wood.) I have found the multiple antibiotics used in lyme treatment to be less invasive, less expensive and less traumatic than IVIG (or PEX). We will be here for you. Elizabeth
philamom Posted January 7, 2011 Report Posted January 7, 2011 (edited) I agree with Elizabeth, since treating for lyme, my daughter is responding less and less to other illnesses. Here to hold your hand, if needed edit to add: Fixit- you might want to hold off until your next week's appt. before making any changes to your abx/supplement routine. It might get confusing to explain what's causing what. JMHO Edited January 7, 2011 by philamom
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