posted
Does anyone know Anything about the Q-RIBb test for Lyme. I was diagnosed 4 years ago by the Bowen lab(+ for Lyme and Babesiosis) which is subsequently no longer in existence and has changed its name to Central Florida Research Incorporated. Is this a valid test? I called the lab and spoke to a man named Tom. I asked him if insurance companies recognized their testing methods as valid and he said yes. I asked him if my tests done by Bowen labs were accurate and valid and he said they were. He said they are using a more advanced method then was done by Bowen Lab and that due to the advanced technology the testing procedures had changed but were similar and that Bowens methods were valid methods.
I am sure I have Lyme, clinically no doubt, but if my testing is not recognized by insurance and if my Lyme progresses to the point where I cannot work...I am concerned I would have a difficult time getting disability. Probably would have a difficult time anyway.
Is PCR testing the gold standard?
Posts: 21 | From california | Registered: Jul 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would not rely on Bowen or CFR as your only source of validation of your infection. IGeneX Western Blot or Urine Antigen testing as well as coinfection testing would make sense.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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bettyg
Unregistered
posted
pt, welcome; so glad you found us.
i too recommend IGENEX lab, calif; our no. 1 lyme diagnostic lab. more details all about in my newbie package i offer folks!!!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you! ******************************
we recommend 6-12 WEEKS of doxycycline antibiotics; 2 months symptom FREE before stopping antibiotics.
so glad you found dr. burrascano's 05 lyme guidelines!
call your dr. and DEMAND MORE! you are now in the LYME WAR CONTROVERSY ... another thing you didn't ask for!
please see BELOW LINK about ACTION ALERTS....CALLING 4 WASH. DC PHONE NOS. GIVING THEM YOUR FULL NAME/COMPLETE MAILING ADDRESS AND TO "PUT LYME DISEASE ON THEIR AGENDA!"!!!!
IDSA, infectious disease society of america, are infectious drs. who:
.. do NOT believe in CHRONIC LYME;
.. treat from 1 day to 3 weeks MAX ANTITIOBICS, AND YOU ARE "CURED"! HOG WASH!!
ILADS, intl lyme associated disease society, are our LLMDS, LYME LITERATE MDS, and they:
... believe in chronic lyme AND TREAT US AS LONG AS NECESSARY!!!
... another controversy; various STATE HEALTH DEPTS. FILING CHARGES on our llmds for treating antibiotics longer than 4 weeks!!!
example: see activism; read about DR. CHARLES RAY JONES, KIDS NO. 1 LLMD IN CONN! starting his 3rd year of charges trying to take away his license!!!
*********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
p.17: Antibiotic Choices & Doses From CBB: Amoxicillin-Children: 50 mg/kg/day divided into q8h doses. My pharmacist did the math for me, & it means: 35 lb child - 800 mg per day 70 lb child - 1,600 mg per day [1 kg=2.2046 lbs]
p.19: Treatment Categories Early Localized - single erythema migrans rash with no constitutional symptoms. Children: oral therapy for 6+ weeks.
According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria. Take a copy to your Dr and see if (s)he will treat according to these Guidelines. Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary. *************************************************
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1500 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. ***************
I want to make sure we have whoever on our NATIONWIDE LLMD list, which I have also with 12 other folks.
If you call any of the names where we do NOT have complete info, please ask the following and furnish me when you are done so we can add it to our nationwide llmd lists!! THANK YOU!
if you end up calling any above WITHOUT COMPLETE INFO, would you get the following IF possible from them??
we need full name SPECIALTY street addy city, state
phone no. fax no. web site or email if possible
cost per hour for 1st visit cost for followups
do they take insurance? what kind? treat by IV or ORAL?
thanks for helping us add to our drs. of around 300 nationwide who are LLMD! **************************************
we ask that all new members post in SEEKING DR. area and show cities/state in subject line.
please tell us a little about yourself; it helps in directing you the best way we know how! read 1 of top posts, and then answer the questions i've asked ok; WE THANK YOU KB!
also by posting on board, FLORIDA folks reach out and give you the MOST CURRENT INFO that we with nationwide lists just do NOT get promptly!! *********************************************
PLEASE HELP NOW!!!! THIS IS ABOUT OUR NO. 1 KIDS LLMD IN USA .... DR. CHARLES JONES IN CONN; who is up on his 3rd straight year of charges by conn. health dept.....BOGUS charges trying to take away his license to treat kids.
HE HAS TREATED OVER 10,000 kids, and he is 76 !!! he came out of retirement to treat kids as we only have 12 kids llmds NATIONWIDE...PLEASE HELP!!! *********************************
checks--not paypal--for Dr Jones jblral Frequent Contributor Member # 8836 posted 09-07-2008 11:33 AM ________________________________________ I've been informed that Dr Jones defense is asking for CHECKS not paypal, at the following address:
HOW TO DONATE TO THE LEGAL DEFENSE FUND:
Make Donations payable to: "Pullman & Comley Trust Account-for Dr. Charles Jones" Mail to: Elliott B. Pollack c/o Pullman & Comley, LLC 90 State House Square Hartford, CT 06103-3702
Note "gift" in the memo field
Apparently, the person with access to the paypal account is away on vacation, and the money can't be used until that person returns with the code. For immediate use of the money, they need it in checks to above address. ________________________________________ Posts: 294 | From: California | Registered: Feb 2006 | IP: Logged
Dr Jones on YouTube--watch & donate jblral Frequent Contributor Member # 8836 posted 09-07-2008 12:32 AM ________________________________________ This YouTube site, featuring Dr. Jones in an excerpt from "Under Our Skin," was created by Andy Abrahams Wilson (creator of the documentary itself) - in an effort to help Dr. Jones meet a critical, imminent fundraising deadline to retain his legal defense team. This is a wonderfully generous act on the part of Andy and Open Eye Productions!
Dear Folks,
We've created a YouTube site with an excerpt from UNDER OUR SKIN featuring Dr. Jones. There is information at the end of the clip and in the description on YouTube about how to donate. Please feel free to distribute widely! The site can be accessed at www.YouTube.com/DefendLymeDoctors
Hope this helps! Andy
URGENT LETTER FROM DR. JONES 7/8 ellenluba Frequent Contributor Member # 1707 posted 09-07-2008 02:35 AM ________________________________________ CHARLES RAY JONES, M.D. Madison Towers 111 Park Street , 1st Floor New Haven , Connecticut 06511 Tel (203) 772-1123 Fax (203) 772-0682
July 7, 2008
Dear Friends,
Urgent! I must raise $90,000 by July 14, 2008 and an additional $110,000 by August 10 in order to retain the legal team which has been representing me. If these sums are not raised, I will not be able to continue defending the charges brought against me by the Connecticut Department of Public Health for my treatment of children with Lyme disease, and I fear that I will be forced by the Connecticut Medical Examining Board to resign my license to practice medicine and to retire. This must not happen!
I understand all too well the considerable hardship that Lyme disease has imposed on too many families, and regret the need to appeal to you yet again for donations to my legal defense fund. Yet the prospect of surrendering this critical fight is more daunting: If I do not continue to oppose these charges, how many more physicians will be left vulnerable to similar charges for their treatment of Lyme disease? How many more sick children will be abandoned?
I recognize that the figure of $200,000 appears overwhelming. However:
* If 10,000 families contribute $20, we will be able to meet our goal; * If 4,000 give $50, we will be able to meet our goal; * If 2,000 give $100, we will be able to meet our goal; * If every member of the Lyme community gives something, we will reach this goal!!!
I am confident that we can succeed, but I need the help of each and every one of you. Time is of the essence and you must respond today. In return, I pledge to you that I will not give up this fight.
With my greatest appreciation,
Dr. Jones
Charles Ray Jones, M.D.
HOW TO DONATE TO THE LEGAL DEFENSE FUND:
Make Donations payable to: "Pullman & Comley Trust Account-for Dr. Charles Jones" Mail to: Elliott B. Pollack c/o Pullman & Comley, LLC 90 State House Square Hartford, CT 06103-3702
Note "gift" in the memo field --------------------
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If you get your Igenex results back and the tests are "borderline", as in, we can't say you don't but can't say you do......I would retest, checking for coinfections through Igenex.
My logic on that is maybe even if your Lyme doesn't come back positive (or comes back with those "IND" things, which means you are borderline I think), one of the coinfections will, and then you will have proof that you at least have SOME sort of tick born disease.
Igenex is very well-known for their babesia FISH test. Or, I guess you could do them all at once. It's just that, if the Lyme is definitely neg. from them the first time, it may not be worth the money going back and testing for babesia. But if money isn't an issue you can do it all at once.
To rephrase everything I just said, because I don't think it made sense........just test for coinfections too, if they come back positive, you will have proof you probably have lyme even if the Lyme from Igenex doesn't give you a positive.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
PS-----i tested positive for Lyme through Bowen back in 2002. I tested negative for Babesia though!
About 4 years later, took Igenex and got positive Lyme, AND positive Babesia. The Babesia was news to me, as I had never even considered it. Neg. for Bartonella though.
2 years after that, got positive Lyme, positive Babesia (i think), positive Bartonella! (prior infection)
I was definitely not bit by any more ticks during that time. It is obvious, even with Igenex, it is just what is floating around in your blood that day. So, retest later on too!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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