posted
I've been out of the Lyme loop for quite some time but I consider myself pretty up on it. I've never heard of this scenario, though, so I'm hoping you guys can tell me something about it.
My cousin had Lyme in 2009 and tested strongly positive by WB at our local hospital lab. She was treated with abx, but because she also has psoriatic arthritis it's hard to tell if she really got it nailed. Recently she had felt her symptoms getting worse and her PCP decided to test her for Lyme once again.
She had a highly positive test done at the same lab. He put her on Doxy but when she didn't improve he changed it to Keflex and referred her to an infectious disease specialist. She called me tonight in disbelief.
She said the ID doc had looked at this test and the one from '09 and told her the exact same bands tested positive then and now, so that meant it was not a new infection and she could "throw out the Keflex, you don't need it."
Now I realize many things can throw off a Lyme test, but I've never heard that you'll show permanent antibodies (unless you have the vaccine). This is especially puzzling considering she's on methotrexate, an immune suppressant, for her PA.
I'm shocked the ID doc didn't do further tests - my cousin is now going to ask for another WB from a different lab. Can anyone shed any light on this? Thanks.
[ 07-09-2015, 02:56 PM: Message edited by: Laurie ]
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got rid of lyme a little over 10 years ago. That is when I completed my treatment.
About 3 years ago, an ear, nose, throat doctor tested me for lyme disease through Quest or LabCorp and I tested positive. (I was having a severe sinus infection and he was having trouble clearing it.)
So, 7 years after getting rid of lyme, I was still carrying the antibodies to lyme.
I don't have any lyme symptoms. I am perfectly healthy.
The antibodies may not be permanent, but they can be there for a very long time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Its true the antibodies last a long time because the memory B cells continue to make them whether there is an infection or not. But just because they are the same as last time, it doesn't mean that the old infection is persisting or it actually could even be new. ID doctors believe down to their bones that since Lyme never persists, it must be the old antibodies hanging around. And its unlikely a new infection would be identical but possible.
Usually the antibodies do decline some over time as they have a few month half life and without any stimulation by antigen presenting cells, the memory B cells should slow down. So both the ELISA and some of the WB specific bands = antibodies to specific surface antigens should drop out eventually.
But if its a persisting low level infection controlled mostly by the immune system, the B cells will get stimulated and keep producing the exact same antibodies they memorized from the early more dramatic time of the infection.
But ID doctors simply won't and really can't consider alternative theories to the IDSA guidelines and expect to keep their reputation. So this is a bad situation for seeing an ID doctor since he simply won't consider one of the real possibilities.
So it goes back to the symptoms and does it look like the original Lyme or have any of the chronic persisting Lyme symptoms that are difficult to explain. If its the chronic persisting form that somewhere between 20-35% of Lyme infections become, its going to be difficult to treat. Once the spirochetes have disseminated and are able to hide, evade the immune system through numerous tricks and evade antibiotics through a mechanism called persisters.
Aucott, Lewis and Zhang have been doing some interesting work on persisters. They are able to shut down their metabolism like a bear hibernating and antibiotics require an operating metabolism to kill the spirochete. About .1 to .001% become persisters when stressed by antibiotics. So every time you take antibiotics, a small population goes into this persister state and survives. Lewis recently found that by pulsing Ceftin 4 times, after each pulse many of the persisters come out of the low metabolism just in time for the next pulse. Since Borrelia divide very slowly, Lewis found it took four perfectly timed pulses of Ceftin to knock out 100% of the spirochetes in-vivo. Now they will see if it works inside a human which would be a cur if it works. It might take 10 pulses but eventually it will whittle down the population with the help of the immune system.
Their are 2 pathways to testing that might offer additional information. The Immunetics C6 peptide has been shown to go negative when the infection is cleared. So if the C6 is negative yet all the other antibodies are still there, that's a good sign. If however its still positive, even an ID doctor might consider it an ongoing infection. There is also a lab ALS that does a culture which if positive, indicates an ongoing infection and if negative, its not.
Even though this paper is about dog testing, its the same in humans and you can see how the C6 behaves once the infection clears.
The CDC wrote a very biased fairly dishonest paper about it but I wrote an analysis that shows they were wrong in their conclusions. This is just in case the CDC paper spooked you:
Hope that helps a little.
Posts: 51 | From California | Registered: Aug 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Treatment has not been adequate. Mon-therapy with just one Rx is at risk of failure. The Infectious Disease doctor is not correct.
If you want more to reply, you might add some space breaks for easier reading of the post. Many here just can't read solid block of text. Finished paragraphs of 3-4 lines max is best. That's about 5-6 in composition mode.
My eyes could only pick out a few key questions, hope this helps:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. =
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, I edited the post to read easier - been awhile since I've posted anything so I forgot about that. TY for the reminder.
And TY to those who've answered...
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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