Only band 66 KD IGG reactive

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eby78
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Date Joined Nov 2016
Total Posts : 13
   Posted 3/28/2017 11:05 PM (GMT -6)   
I just got my test back and 66 was the only one that was reactive. All my symptoms line up which is why my functional health Lyme literate Dr wanted the test.

I've read that you need 5 bands to prove lymes...but I am not sure on that either. There is just SO much information out there.

I go back to my dr in a few weeks to go over the test results but I have seen them early b/c of access that I have.

My WBC are a little nerve wracking to interpret also. This so stressful!!!

Your thoughts and wisdom would be appreciated. THANK YOU!

Elizabeth

Post Edited (eby78) : 3/28/2017 10:47:12 PM (GMT-6)


caramba
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Date Joined Aug 2016
Total Posts : 605
   Posted 3/28/2017 11:50 PM (GMT -6)   
Hi Eby,

66 isn't on any of the Igenex test criteria bands (For IgM and IgG)

www.igenex.com/Website/testing/interpretations/lyme-disease/

which lab did the testing for you?

eby78
New Member


Date Joined Nov 2016
Total Posts : 13
   Posted 3/28/2017 11:53 PM (GMT -6)   
Through Quest...the immunoblot? I really am not sure????

Post Edited (eby78) : 3/28/2017 11:38:45 PM (GMT-6)


Girlie
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Date Joined May 2014
Total Posts : 33967
   Posted 3/29/2017 12:54 AM (GMT -6)   
eby - would your Dr. agree to sign a lab req for Igenex?

You can just get the Lyme WB IgM and IgG for $210.

You'd have a better chance getting some positive Lyme specific bands show up.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

eby78
New Member


Date Joined Nov 2016
Total Posts : 13
   Posted 3/29/2017 12:58 AM (GMT -6)   
I guess when I have my next appt in a few weeks to go over these results we will see.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 3/29/2017 8:41 AM (GMT -6)   
Well, band 66 does indicate the bacteria for Tick-borne relapsing fever - B. Hermsii.

It can also be a part of the 'late response' or of chronic Lyme:
"Antigens of 66 kDa and 31/34 kDa were confirmed to be part of the late antibody response."
/www.ncbi.nlm.nih.gov/pubmed/3819479
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

k07
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Date Joined Sep 2015
Total Posts : 2556
   Posted 3/29/2017 9:32 AM (GMT -6)   
I think you need to test with a better lab. Quest and Labcorp are horribly inaccurate. You'd be better off testing through IGeneX. Or, maybe your doctor will feel that band 66 is enough. Clinically if you have all the symptoms and have ruled out other stuff then it makes sense to try lyme treatment.

eby78
New Member


Date Joined Nov 2016
Total Posts : 13
   Posted 3/29/2017 9:33 AM (GMT -6)   
Interesting. I just looked a little of it up and see that it's more common in the west. I lived in Colorado from 2005-2008 then TX from 2008-2011 (active duty AF) but can't remember any of these extreme symptoms happening then (recurrent fevers and such)...but that might not be the most unusual thing in the world b/c that's a long time ago. I did struggle with anxiety however during some of these years and once we moved to Montgomery, Al (2011-2013) I definitely had many more typical lymes symptoms and they've just gotten worse.

I suppose ti's possible I was infected in TX when we had MANY ticks in our home b/c of our dog. We had an Orkin man come in for some insect issues and he basically found MANY MANY tick eggs and live ticks. We were basically told b/c it's TX that ticks aren't diseased and we shouldn't have to worry much. But now I'm questioning all of this. The potential tick bite that I considered the only one I have I found 4.5 years ago midpoint of living in AL...however we had just spent 4.5 mos in MI during part of my husband's deployment. At that point my symptoms grew worse but seemed "manageable' b/c I was thinking it was just adrenal fatigue. Until this past July (2016) I knew something else was happening. Jan 2016 & April 2016 I was very ill with what would appear to be EBV. I'm sure I had a fever. And then I just went down hill from there.

UGH. This is all so discouraging to try and figure out. Any wisdom and thoughts are so welcome. I'm so afraid of the herxing process (as I've experienced already when I was trying to figure this out on my own) and the cost of treating. It's all just so overwhelming.

Elizabeth

eby78
New Member


Date Joined Nov 2016
Total Posts : 13
   Posted 3/29/2017 9:36 AM (GMT -6)   
K07---My dr will first use quest b/c that's what my ins covers. I'm also curious if he will want more. We'll see. The cost of treatment is so scary to me. So if he feels he can treat without the IgenX text (that I'm not certain my ins will cover) I will be thankful. but I really want to do what he suggests if at all possible.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 3/29/2017 11:44 AM (GMT -6)   
All that about ticks in ________ (insert any state) not having Lyme is nothing more than a fairytale that people wish were true is the thing. I was infected no later than 1970 in Central California. That was both before it was "discovered" in the East and on the other side of the country. Now that I live in Arkansas, they also say that it's not here (even though most of the surrounding states admit that Lyme is there), and I've talked to MANY people locally that either do have, or have had Lyme. States have to report it for it to be acknowledged and there is still a great effort to keep it quiet - for whatever reason.

Lyme can first present in soooo many ways! Purely as an arthritic condition, purely psych issues, purely as anxiety/depression/OCD/dementia, as Lupus/MS/ALS, as muscle aches and pains or any other number of things - and that's just Lyme.

Lyme rarely is the only infection passed at the time, so there are any number of other infections that can show up with strong symptoms as well. For me, as a child, my first serious system was out of control fevers - so I had tons of ice baths for several weeks. One of my strongest memories as a young child.

Herxing is an overload of toxins. Not all herxing has to be serious, but it all depends on how well your body detoxes on it's own, and how much you use the detoxing routines, as well as possibly taking supplements if you have gene mutations that prevent the body from detoxing well. It's not for sure that everyone will herx - some never do, but most do on some level. We can help you with learning how to detox your body though. We have some good suggestions in the "new to Lyme?' thread on detoxing as well as this site:
​​
​http://www.tiredoflyme.com/detox-methods.html​
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

eby78
New Member


Date Joined Nov 2016
Total Posts : 13
   Posted 4/2/2017 9:28 PM (GMT -6)   
So, B. Hermsii actually lymes? Is it any easier to cure?

I go to a dr. appt on Tuesday, so I hope to know much more by then.

Girlie
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Date Joined May 2014
Total Posts : 33967
   Posted 4/2/2017 9:57 PM (GMT -6)   
eby78 said...
So, B. Hermsii actually lymes? Is it any easier to cure?

I go to a dr. appt on Tuesday, so I hope to know much more by then.


I've read that it is the species causing tick-borne Relapsing Fever.

I don't know if the treatment is the same as Bb treatment.
Hopefully others with more knowledge will provide more information than I can.

Edit- I realized after I posted that traveler already said what I did in a previous post.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 187
   Posted 4/2/2018 6:43 PM (GMT -6)   
Band 66 treatment is 100 mg doxy for 14 days

Donjr
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Date Joined Apr 2018
Total Posts : 187
   Posted 4/2/2018 6:46 PM (GMT -6)   
Caramba,
Used your link and under lyme it is there.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/3/2018 10:53 AM (GMT -6)   
Yes not sure why he said that. band 66 is very well studied and documented in Lyme research. Search it by the name Oms66. Google that and you will see a lot about band 66.

I have read up quite a bit on band 66. I have had seen some science articles that make it look like band 66 is specific to Lyme. I have also seen people say band 66 can be caused by other bacteria.

In most of the tables in the studies I have looked at, usually a couple "controls" have band 66. Of course these study participants were hand picked, and in several of them they stated that they were seeking candidates with documented medical histories with other infections - HIV, Syphilis, Herpes, Strep etc.

I personally think the scientific studies and articles lean toward band 66 being very "specific" to Borrelia . Maybe not proven to be 100% specific to Borrelia Burgdorferi, but it looks to me to well into the 99% percentile specific to Borrelia.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2047
   Posted 4/3/2018 11:07 AM (GMT -6)   
Traveler said...
Well, band 66 does indicate the bacteria for Tick-borne relapsing fever - B. Hermsii.

It can also be a part of the 'late response' or of chronic Lyme:
"Antigens of 66 kDa and 31/34 kDa were confirmed to be part of the late antibody response."
/www.ncbi.nlm.nih.gov/pubmed/3819479


Very interesting. I just went back and looked at my labs last night. My first Western blot was in Sep 2016 and 41 and 66 were IGG positive. I had Igenex WB in Jan 2017, and 41 and 58 and maybe 45 were positive and 39 Indeterminate, but 66 was not positive at all on Igenex. Had a 2nd Labcorp WB in Nov 2017. This time only 41 was positive. I don't know why band 66 was only positive the first time.

Post Edited (WalkingbyFaith) : 4/3/2018 10:11:04 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33967
   Posted 4/3/2018 1:01 PM (GMT -6)   
Donjr said...
Band 66 treatment is 100 mg doxy for 14 days


Not if it's lyme. 100 mg too low and 14 days not enough for chronic lyme.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/3/2018 3:48 PM (GMT -6)   
Girlie said...
Donjr said...
Band 66 treatment is 100 mg doxy for 14 days


Not if it's lyme. 100 mg too low and 14 days not enough for chronic lyme.


Yes I totally agree with Girlie here and want to add. That most of the studies on band 66 show that it most commonly shows up in late stage illness and not very common to show up in acute/ EM stages.

Not sure why band 66 is so heavily documented, but it kind of looks like they were trying to use it for vaccine development or for test kits.
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