kimballot Posted July 28, 2010 Report Posted July 28, 2010 (edited) I am learning so much about lyme lately, and am going to be getting my son tested. I am now reading (on another post) that Quest is not drawing blood for other labs, so I need to call around to find someone to draw the blood. Does IGENEX send a kit (like the Cunningham test did)? Also, I saw that residents of New York State CANNOT get the basic lyme panel (BASIC LYME PANEL 4090 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)**) and CANNOT get the complete lyme panel (5090 COMPLETE CO-INFECTION PANEL Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGE IgG & IgM, Bartonella IgG & IgM) New York State residents can ONLY get the initial lyme panel (5010 Western Blot IgG, Western Blot IgM, Lyme PCR-Serum, Lyme PCR-Whole Blood).... What is that about?? Why would one State limit what you can get... and is the initial lyme panel going to tell me anything? Any thoughts are appreciated! Edited July 28, 2010 by kimballot
sf_mom Posted July 28, 2010 Report Posted July 28, 2010 You'll have to read 'Cure Unknown' to understand the politics behind Lyme and NY State.
kimballot Posted July 28, 2010 Author Report Posted July 28, 2010 (edited) You'll have to read 'Cure Unknown' to understand the politics behind Lyme and NY State. GREAT! And I thought I was over the worst of my battles when I finally found this website and Dr. B!! I am logging into amazon.com right now to order the book. Can't wait! (ugh!) Edited July 28, 2010 by kimballot
sf_mom Posted July 28, 2010 Report Posted July 28, 2010 Whoever thought medicine could have so much politics. I'll be interested to know what you think once you've read the book. -Wendy
philamom Posted July 28, 2010 Report Posted July 28, 2010 I am learning so much about lyme lately, and am going to be getting my son tested. I am now reading (on another post) that Quest is not drawing blood for other labs, so I need to call around to find someone to draw the blood. Does IGENEX send a kit (like the Cunningham test did)? Also, I saw that residents of New York State CANNOT get the basic lyme panel (BASIC LYME PANEL 4090 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)**) and CANNOT get the complete lyme panel (5090 COMPLETE CO-INFECTION PANEL Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGE IgG & IgM, Bartonella IgG & IgM) New York State residents can ONLY get the initial lyme panel (5010 Western Blot IgG, Western Blot IgM, Lyme PCR-Serum, Lyme PCR-Whole Blood).... What is that about?? Why would one State limit what you can get... and is the initial lyme panel going to tell me anything? Any thoughts are appreciated! We did our IgeneX test thru Quest Lab. We were running other labs so they didn't even charge for a drawing fee. You take the kit from IgeneX and have them spin the blood into serum or just use the whole blood depending on the test(s) you order. It must be shipped on Mon, Tues, Wed...i think. Look at the form. Also, a doctor must sign the form.
philamom Posted July 28, 2010 Report Posted July 28, 2010 I really need to stress the importance of running the Igenex test before pursuing IVIG/PEX treatments. Like Wendy has stated in previous posts, if this in an underlying cause, IVIG won't be as effective until your on the right course of abxs. Plus, if your paying for it (like we did for the first one) you want to rule it out. Also, after IVIG (I think) you have to wait a certain amount of time before checking for Lyme.
LNN Posted July 29, 2010 Report Posted July 29, 2010 For those interested in a great lyme website, go to www.ilads.org Under the treatments tab, there's a paper by Dr. Burrascano (one of the Dr K's of Lyme) Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses by Joseph J. Burrascano Jr, MD It's a very good diagnostic summary (where you will see many Pandas-like symptoms). Toward the end, there's also a good summary of supplements, including doses and suggested suppliers, on: probiotics, vitamins, alpha lipoic acid, vitamin B, Magnesium, essential fatty acids, Fish Oil and others. Kim - you will never see a doctor or diagnosis the same way after reading Cure Unknown.
justinekno Posted July 29, 2010 Report Posted July 29, 2010 (edited) We used Clinical Lab Partners and they will not send to any lab other than their own. We didn't have the IGenex kit with us though when we went so I'm not sure if they would have done just a draw for us. I did call Quest and they said if we have the kit, they will do the draw. We ended up going to our integrative who has a lab on site and they actually had the IGenex kits there since the dr's office uses them so much. We are now waiting for our results. You can call IGenex directly and they will send the kit. It came Fedex to me in about three business days - across the country. I am now reading (on another post) that Quest is not drawing blood for other labs, so I need to call around to find someone to draw the blood. Does IGENEX send a kit (like the Cunningham test did)? Edited July 29, 2010 by justinekno
justinekno Posted July 29, 2010 Report Posted July 29, 2010 I read this book a while ago but don't remember the details of Lyme and NY. I'll have to read it again! You'll have to read 'Cure Unknown' to understand the politics behind Lyme and NY State.
AmbersMommy Posted July 29, 2010 Report Posted July 29, 2010 Some Quests will draw blood for other labs and some won't. It depends on the, "region" they are in. The quest labs down by Dr. B's office apparently will draw blood for other labs. The Quest labs near me, east of Hartford, CT won't draw blood for other labs. A representative of Quest actually explained that to me. Call the Quest lab you want to go to and find out if they will draw for other labs. Igenix will send you a kit. I had our pediatrician's office draw the blood. Had to pay the office co-pay, but it wasn't that bad. Good luck!
sf_mom Posted July 29, 2010 Report Posted July 29, 2010 (edited) Also a great video posted there: http://www.ilads.org/lyme_disease/lyme_videos_1_d.html A must watch video especially the talk about child symptom presentation Edited July 29, 2010 by SF Mom
kimballot Posted July 29, 2010 Author Report Posted July 29, 2010 Thank you all for your informative responses! I will request a kit, call blood draw sites for one that will help us, read the online article (already started - thanks! very informative), read Unknown Cure (online reviews look great), and say a prayer for all the families dealing with lyme who are going through all of this and who have paved the way for me. Thank you all! You are the BEST!
lfran Posted July 29, 2010 Report Posted July 29, 2010 We just did the Igenex test Monday. I chose the basic one because the difference between the basic and the 4050 is the PCR analysis, which you can't do on antibiotics anyway (have to be off abx for 10 days, they said when I called but which they DON'T say on their literature). So, since DS9 is on abx and isn't coming off them anytime soon, I saved the money and did the one without the PCR -- which is the one available for NY anyway, if I'm understanding it correctly. And thank you to whoever posted recently about the abx and lyme testing. Otherwise, I would never have known to ask. Thank you all for your informative responses! I will request a kit, call blood draw sites for one that will help us, read the online article (already started - thanks! very informative), read Unknown Cure (online reviews look great), and say a prayer for all the families dealing with lyme who are going through all of this and who have paved the way for me. Thank you all! You are the BEST!
lfran Posted July 29, 2010 Report Posted July 29, 2010 I re-read your post, and I read your post wrong. Sorry. In case anyone wants it, here is the link to the Igenex tests as a PDF. It's part of what they send you in te mail. http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf I am learning so much about lyme lately, and am going to be getting my son tested. I am now reading (on another post) that Quest is not drawing blood for other labs, so I need to call around to find someone to draw the blood. Does IGENEX send a kit (like the Cunningham test did)? Also, I saw that residents of New York State CANNOT get the basic lyme panel (BASIC LYME PANEL 4090 Western Blot IgG, Western Blot IgM, Lyme IgG/IgM/IgA Screen (IFA)**) and CANNOT get the complete lyme panel (5090 COMPLETE CO-INFECTION PANEL Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGE IgG & IgM, Bartonella IgG & IgM) New York State residents can ONLY get the initial lyme panel (5010 Western Blot IgG, Western Blot IgM, Lyme PCR-Serum, Lyme PCR-Whole Blood).... What is that about?? Why would one State limit what you can get... and is the initial lyme panel going to tell me anything? Any thoughts are appreciated!
MichaelTampa Posted July 29, 2010 Report Posted July 29, 2010 Another way to do it is go to an independent blood drawing place that gets business just doing that and sends it off to other labs for processing, of course most of it gets sent to LabCorp and Quest. I went to Granite, not sure how local or national it is. They have a contract with Quest, meaning most is sent to Quest, but they charged me a $15 fee to draw it and then happily sent it to IGeneX for me.
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