Tested positive once, negative after

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lyme_in_georgia
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 1/30/2018 7:05 AM (GMT -6)   
Hi all!

I recently moved from the coast of Maine to Georgia and have been suffering for years with chronic fatigue, headaches... the usual suspects.

In Maine I tested positive for Lyme with a western blot and was given a round of doxy and then went on the Results RNA sprays, and felt as normal as I could imagine. Then, with that being pretty expensive, I stopped and started to feel a little worse and all, but thought maybe it was something else. But I was re-tested for Lyme, twice. Both of those have come back negative, but I'm wondering...

that'd be on the side of "possible", right? To have been tested + one time and then - afterwards? Or am I just fishing? My symptoms are rough, again. I'd been admitted to the hospital because of suicidal tendencies and the fatigue is absolutely debilitating.

I thought I'd come on here and introduce myself and also seek a little input.

Thanks!

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/30/2018 10:33 AM (GMT -6)   
Welcome lyme in georgia.

Lyme can bore into areas of the body with collagen (skin, joints, brain). This could be why it will not be shown in your blood test.

Lyme literate medical doctors should rely on symptoms for a diagnosis. But, being human, we all want a test that proves something before we treat.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/30/2018 11:24 AM (GMT -6)   
Hi Lyme_in_Georgia!
Welcome to the community!

If you haven't yet, we do encourage all new members to read through the "New to Lyme" thread, as it has a lot of really great and helpful information contained in it.

It's really very possible that you had just enough treatment to push the bacteria out of the bloodstream enough to keep you from having a positive test this time - but the timing of your experience certainly indicates that you likely didn't have enough treatments - especially if you weren't able to extend the treatments for 2 - 3 months past the point where you had no more active symptoms.

These bacteria don't live out their lives in the bloodstream, where the immune system can get to them, and testing can reveal them - and the testing is very faulty, missing up to 50% of those that actually have the infection - not to mention the co-infections that are usually there as well. Where you tested for any co-infections?

Unfortunately, many Lyme patients do attempt suicide, or deal with suicidal thoughts. I know I did. This can be from Lyme or Bartonella (one of the co-infections that are possible), and is considered a symptom of these infections. So do be sure to include that with your list of symptoms.

Do you have a Lyme literate doctor to evaluate you again? I would suggest talking to a LLMD, or you could try starting a natural treatment on your own to see how you respond.

Let us know what other questions you may have and we will see how we can be of help!!
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 set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 1/30/2018 11:41 AM (GMT -6)   
lyme_in_georgia said...
Hi all!

I recently moved from the coast of Maine to Georgia and have been suffering for years with chronic fatigue, headaches... the usual suspects.

In Maine I tested positive for Lyme with a western blot and was given a round of doxy and then went on the Results RNA sprays, and felt as normal as I could imagine. Then, with that being pretty expensive, I stopped and started to feel a little worse and all, but thought maybe it was something else. But I was re-tested for Lyme, twice. Both of those have come back negative, but I'm wondering...

that'd be on the side of "possible", right? To have been tested + one time and then - afterwards? Or am I just fishing? My symptoms are rough, again. I'd been admitted to the hospital because of suicidal tendencies and the fatigue is absolutely debilitating.

I thought I'd come on here and introduce myself and also seek a little input.

Thanks!


Welcome Lyme_in_Georgia!

Since you tested positive (to back up your symptoms), and were under-treated (One round of doxy is not enough for chronic lyme) - you need to get back on treatment.

If you need help finding a LLMD, start a new thread: "Looking for LLMD in Georgia" and then enable your email so members can send you names privately.

You can also send me an email, and I'll send you some options.
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

lyme_in_georgia
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 1/31/2018 8:01 AM (GMT -6)   
Well hot dang, thanks for the notes so quickly!

I was at Erlanger yesterday and while my PCP admits she doesn't know much at all about Lyme or about natural healing, she understands that Lyme is a real thing and that holistic health works, as well, and gave me someone to see whom others have also recommended. I'll give him a shot, and try getting back on the supplement package I was on a couple years ago. That was when I was felling the most normal I had in a long time.

Thank you, again!

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1228
   Posted 1/31/2018 8:54 AM (GMT -6)   
It's been noted in the literature a few times that patients may become seronegative after antibiotic treatment. Not really known why as far as I can remember.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/31/2018 5:04 PM (GMT -6)   
Good luck and let us know how you are doing.

lyme_in_georgia
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 2/1/2018 7:32 AM (GMT -6)   
Thanks, all!

One other quick Q... I was on a protocol in 2016 that worked extremely well and then when I moved from Maine down here, I stopped as it was kind of pricey and my new job wasn't paying all that well.

I feel kind of stupid for not having looked at the timeline of my symptoms until like... a few days ago... but it all lines up with when I started feeling like garbage again.

If a protocol worked for me once, there's a good chance it'd work again to bring my symptoms to some sort of normalcy, right? Or should I start looking for something else.

Thanks for the kind welcomes, too. I really appreciate it.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 2/1/2018 10:19 AM (GMT -6)   
I would go back on the protocol that previously worked - and hopefully you will get results again.
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

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 2/1/2018 11:19 AM (GMT -6)   
Just please realize that some find that the protocol they used before won't work if you try to use it again. If that happens, it's just time to find a different protocol. I just don't want you to get discouraged if it doesn't work again. No one knows why this happens sometimes, but it does.

Best of luck and please do let us know how it goes!
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 set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

lyme_in_georgia
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 2/1/2018 12:19 PM (GMT -6)   
Thanks, Traveler! I've been working hard to wake up every morning and embrace that my life is exactly where it is supposed to be at each moment in time. There's only forward movement and I can't look back on too much. Here's hoping this will work again... fingers crossed. smile

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 2/1/2018 4:34 PM (GMT -6)   
lyme_in_georgia said...
Thanks, Traveler! I've been working hard to wake up every morning and embrace that my life is exactly where it is supposed to be at each moment in time. There's only forward movement and I can't look back on too much. Here's hoping this will work again... fingers crossed. smile


That's the attitude I have adopted too, for the most part. It's working for me, as I don't try to rush things, and I'm not making myself miserable in numerous ways in trying to do things that I no longer can. I'm where I am now, working with that only makes sense.

Best of luck!!! And, again, let us know how you are doing and if you come across any 'stumbling blocks'!
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 set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 7:29 AM (GMT -6)
There are a total of 2,974,693 posts in 326,201 threads.
View Active Threads


Who's Online
This forum has 161300 registered members. Please welcome our newest member, Dakotab02.
372 Guest(s), 5 Registered Member(s) are currently online.  Details
Resurrection, countess18, RobertC, straydog, Lanie G