Researcher developing new testing for LD willing to test your blood

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KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/1/2009 10:17 AM (GMT -6)   
Here's a link to a story about a doctor developing a new way to test for LD.  I contacted him, and he is willing to test your blood as part of his study.
 
I just had a member that I sent the info to point out that it does say you will not get the results from the test.  I didn't see the last 3 attachments (one had this info in it).  You would be taking part in the study with no direct benefit to yourself  ie: no diagnosis or test results.
 
Still an interesting story!
 
 
If you are interested let me know and I will send you the information he sent me (I already wrote and ask his permission to pass along his info).
 
KO


2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009

Post Edited (KO-LD) : 6/2/2009 7:07:49 AM (GMT-6)


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 6/1/2009 11:33 AM (GMT -6)   
Thank you for the link to the article. It's encouraging to know somebody is trying to improve testing.
We might be interested in his study. Could you please send me the info? Please contact me by the email listed by my member name. You can send the info by email, fax, or US post office. Whatever is easiest for you. Thank you. bablymers mom

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 6/1/2009 11:47 AM (GMT -6)   
KO: I am interested. Thanks dianebolton@hotmail.com   D

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/1/2009 12:21 PM (GMT -6)   
I met this man 2 weeks ago at a showing of Under our Skin in Jacksonville. I was jmpressed by him, except for the fact he stated that you cannot get Lyme from dog or wood ticks!

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/1/2009 12:28 PM (GMT -6)   
1bitten2xshy,  Was he there as a speaker? 
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/1/2009 12:32 PM (GMT -6)   
what is the coast to you for his test? i would also like to check into it. plz email me the info
   RD
                                                                                                                 
 
still looking for answers
 


sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 6/1/2009 12:55 PM (GMT -6)   
i would like info melhanks@verizon.net

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/1/2009 1:01 PM (GMT -6)   
Yes he was KO...he opened up before the showing, then was there for a few questions after...but could not stay long as he said "his wife would kill him if he stood her up for their dinner date".

jasrich
Regular Member


Date Joined Dec 2008
Total Posts : 29
   Posted 6/1/2009 1:48 PM (GMT -6)   
Depends on cost but I'm interested - jasrich@yahoo.com.
11/26/08 Igenex positive
Current Rxs 12/17/08: Levoxyl 100mcg, SRT3 5mcg BID, Klonopin .5mg, Seroquel 12.5mg, Ibruprofen PRN (daily), Acidopholus/Bifidus, digestive enzymes, vits B-50, B5 500mg, B-12 1cc 2x/week, Lithium 5mg, fish oil 1500mg/day


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/1/2009 2:41 PM (GMT -6)   
Same as Jasrich: Please help me get in, depending on the cost!
 


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.

Post Edited (+Lyme) : 6/1/2009 4:30:25 PM (GMT-6)


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/1/2009 4:18 PM (GMT -6)   
KO,

Please send me the info. I would love to participate in the study if I don't have to go to Florida and can just send in blood samples.

Thanks,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/1/2009 4:25 PM (GMT -6)   
with everyone wanting the info. maybe it would be easyer for you to post the link and let us check into it. this will save you a lot of emails.

it is so sad we all sit with baited breats waiting for anything promissing to come our way.
   RD
                                                                                                                 
 
still looking for answers
 


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/1/2009 5:10 PM (GMT -6)   
As stated, I met him in person and this is what he sent me in an Email:

If your doctor suspects you have Lyme disease, and is willing to collect the sample and send to us for our research testing, we can do that. We have a lot of forms that have to be filled out. This is for research purposes, though, and not for patient diagnosis.

I recommend that people obtain as many different types of Lyme tests as possible in an attempt to clarify a diagnosis. For example, I recommend that patients obtain the following different tests:

(1) Bb by Flow Cytometry—a direct antigen test done by Central Florida Research Lab in Winter Haven. They have a web site for more info.

(2) Western Blot Antibody test—done by several different labs; the results can vary over time, so having this done more than once might be informative

(3) PCR test—a few different clinical labs do PCR, for example IgeneX, Clongen, and maybe a few others

Maybe KO has some different or further info.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/1/2009 5:17 PM (GMT -6)   
Sometimes I'd rather not know for sure. Is that weird?

I keep clinging to the idea that maybe I have something that can be treated.

The article is great! It gives hope for the right diagnosis. That is good.

Too bad there's no cure.
Bit June 08.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/1/2009 5:19 PM (GMT -6)   
Bitten, I am interested in getting my PCP to send a sample. Or am I to understand that 2) means to send the results?? Should we contact this poor man who will soon be buried in blood and questions???
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/1/2009 9:15 PM (GMT -6)   
I will try and send the email and the attachments tomorrow night, I was having problems with the email and my husband helped me tonite. FYI there isn't a charge as this is a research project.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/1/2009 9:26 PM (GMT -6)   
I just tried to send the info to everyone that has requested it so far, please let me know if you didn't receive it and I will try and send it again.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/1/2009 9:45 PM (GMT -6)   
I got it but if there was pics with it they didnt show up, thank for taken the time to send it to us :)
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/1/2009 10:38 PM (GMT -6)   
Ko,

Can you send me the info too please. Thanks Hun.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/1/2009 11:16 PM (GMT -6)   
this is a funny thread . We will all be standing there throwing covering him with or blood . take it tell us something as he runs screaming
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/1/2009 11:22 PM (GMT -6)   
Ko,

I received the email and document attachments - thanks for sending them. I'm curious - do you know if this study is limited to people who live in the South-Eastern US or is it for anyone anywhere in the US/world? I'm asking because one of the documents seems to suggest it is only for residents of the South-Eastern US.

Thanks,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/2/2009 5:25 AM (GMT -6)   
My take on this is you personally will not get any results on your blood. It is to be used for part of his study. It is not for diagnostic testing results for you personally.

Please pay close attention to the first paragraph he sent me as stated above.

At the showing, he highly recommended Step 1 in my post above.

He stated that many that did not test positive with Lyme thru any other means tested positive thru them. He then double checked the results and found them to be extremely accurate.

jasrich
Regular Member


Date Joined Dec 2008
Total Posts : 29
   Posted 6/2/2009 6:35 AM (GMT -6)   
I received the e-mail.  I live in SC but, if I have a TBD, I was exposed in Northern, MI.  I don't see how or why it matters much.  Thanks for sending it KO.
11/26/08 Igenex positive
Current Rxs 12/17/08: ABX - Omnicef 300mg BID, Minocin 100mg BID, Zithromax 500mg QD all taken MWF; Levoxyl 112mcg, SRT3 5mcg BID, Tapazole 5mg QD, Seroquel 12.5mg, Zyrtec OTC QD, Ibruprofen PRN (daily), Acidopholus/Bifidus, digestive enzymes, vits B-50, B5 500mg, B-12 1cc 2x/week, Lithium 5mg, fish oil 1500mg/day


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 6/2/2009 6:42 AM (GMT -6)   
His research is to establish how much TBD's are really here in the SE United States. That is why it matters.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/2/2009 7:21 AM (GMT -6)   
Hi All,
I edited my original post to include that as one member pointed out we will not get any personal benefit from this study ie: no test results or diagnosis. 
 
I did ask if it was only for people in Florida and he said "no, I'm interested in people from all over the country!" 
 
It's too bad that we can't get results, I would love to have that just for piece of mind.
 
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009

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