Lyme serology negative but not convinced

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

isitlyme
Regular Member


Date Joined Mar 2018
Total Posts : 110
   Posted 3/31/2018 5:35 AM (GMT -6)   
Hi everyone,

I am suffering for 1.5 years now. I remember 8 years ago that had a tick bite and was treated with 8 day amoxicillin. In 2008 i had palsy in my right face.

The doctor was so unresponsible that i only prescribed me a steroid named rosilan and Sent me home. Made phisical therapy and the palsy improved over time. In 2009 i started zoloft, felt fine for 7 years. No major symptoms.

In june 2016, i decided to quit zoloft. The taper was fast and not advisable, two weeks only. But the doctor recommended a fast taper. Anyway. The reazon i decided to quit, was because i started to feel lots of palpitations. I also felt them initially upon starting zoloft, but they subsided with time.

The palpitations became stronger on 2016, and i thought it was zoloft causing them. So i quit. Strangely the palpitations slowed down and got better. But they returned after a couple of months. In september, they started again and this month i had for the first time in my life an episode of double vision. I was scared. Thought i was having a stroke. Did MRI, nothing appeared, was fine.

Then on January 2017, one day i woke up with a horrific sensations of doom and and going to die, on both side of my head just in front of the ears. Extreme insomnia and tinnitus started and i thought i was all zoloft withdrawal. Also got extremly sensitive to sound and feel me left side of tge brain vibrating and getting startled at the slighlest sound. Had to wear plugs since then.

Got to a psych ward with a bunch os psych meds prescribed. Got out with mirtazapine and pregabalin, pregabalin helped a little bit to relieve the panic sensations on both sides, but gradually stopped being effective and the sensations where as strong as in the beginning.

On september 2017 e felt like fainting on my daily dose of pregabaline and mirtazapine. Had to quit those meds. After that i developed extreme muscle spasms on both legs and pain, burning, tingling on the sole of my both feet, and also cold wattery sensation on the same sides of my head, where the pamic doom feelings come from. This cold sensations spreaded also to my whole head and legs at random spots. It could be withdrawal. But i now suspect that was not the case.

Because on present day, i still feel the same strong horror sensations on my head and the spasms tingling on legs feet. I suspect the meds only masked the symptoms.
Last 4 months i am taking a benzo wish helps calm things down, but thats it. The symptoms are there strong like ever.benzo is only masking them.

On the last two months i did several autoimmune tests, ANA,
and many other wish cane negative. Did the western blood and ELISA for lyme wish came negative also. Did MRI on the brain, spine, all came fine. A strange thing is that i developed a small cyst in front of my right hear where the horrific sensations come. It could be coincidence or not.

At the present, after 1 year and 5 months all this symptoms are strong as ever, and no psych medication heals it. I have not noticed even a little bit improvement after só long time and so many psych meds.

I read that many people on lyme and co-infections got negative results on exams. Since i am now almost the 2 year Mark, and still with all this horrific symptoms with the same intensity or worst after só many time and só many meds, i am starting to be desperate and loosing hope. I must have an infection in my brain with one of this bugs i dont know about.

Next tuesday i have a new appointment with a lyme specialist, i hope to get good answers, after seeing his presentation. He is one of the rare doctors not easilly convinced by negative results. a well known french doctor specialist in lyme disease. You can see an interview here its on french tough.

Sorry i forgot to post the vídeo of the doctors interview and presentation:

Presentation: https://youtu.be/hsBGvNBsCP0
Interview: https://youtu.be/__siEPKk1qo


Any thought and support please? Does anyone relate with this symptoms? Sorry for such a longo story.

Post Edited (isitlyme) : 3/31/2018 5:17:32 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 3/31/2018 11:13 AM (GMT -6)   
Hi isitlyme - welcome!

Sorry you've been suffering for 1 1/2 years with this.

What lab did you have the lyme testing done? Unfortunately there are a lot of false negatives when testing...especially with the labs that don't specialize in tick-borne disease testing.


I can't understand anything in the videos - as I don't speak French. (A shame really that my French father never taught his family to speak his native language)
But, I do have that Dr. on my list of LL Dr. 's in France.

Just an FYI - I do have a few more options if he doesn't work out.

We encourage our new members to read through the information in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

BTW - did the WB test show any positive bands, even though the overall result was negative? (there are lyme specific bands that are significant to diagnosing 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

isitlyme
Regular Member


Date Joined Mar 2018
Total Posts : 110
   Posted 4/3/2018 3:34 PM (GMT -6)   
Hello Girlie,

Thank for answering. I just send my blood samples to Armin Labs. And my lyme doctor asked for some more.

My test didnt mentioned any band it only said negative. I am hoping Armin labs can help me. I have to wait now 5 weeks for results and next appointment. I dont know if i can handle much suffering until then.

I am also taking oxazepam. For example, oxazepam masking the heart palpitations. Só o still wondering on i am on withdrawal from meds or if its lyme or some co-infections. Do you thing if oxazepam blocks the palpitations that it could be withdrawal from meds instead of some infection? I am asking this because taking oxazepam or any other psych med, and have an infection that it would not block the palpitations.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 4/3/2018 5:38 PM (GMT -6)   
Welcome isitlyme,

I am so very sorry for what you have gone through and are still facing today.

Yes, many of the symptoms that you describe sound like Lyme and/or other tick related co infections.

I tested Negative but I have been clinically diagnosed with Lyme and co.

With proper treatment there is hope to get better.

I am so happy for you that you will be seeing an llmd.

I wish you the best of healing and I hope you get some relief soon from all these symptoms, Jo

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 4/3/2018 10:13 PM (GMT -6)   
Bartonella is one of the common coinfections of Lyme, and it can cause many of the symptoms you described. I am so sorry for your suffering. I hope this doctor will help you get better.

isitlyme
Regular Member


Date Joined Mar 2018
Total Posts : 110
   Posted 4/4/2018 8:11 AM (GMT -6)   
Thank you all for your kind answers.
I am waiting for a bunch of tests. All IGg and IGm from Borrelia, bartonella, babesia. Elispot from them too. And Seraspot. From Arminlabs and also another germanlab. They are only available 20 April. I have to suffer until then.

I had the appointment with french specialist in Lyme mentioned above, and he was very well familiar with the Disease, said i could have lyme, but would not still prescribe treatment before results. Nevertheless, one thing that sursprised me, is that he thinks out of the box. He said, even if all tests come negative, i might still have a bacterial infection, and that even negative tests are inconclusive. But based on the symptoms i described to him i might have a bad cruel bug that reached my brain. If nothing is rulled out, he said that he would to a trial on abx to see how thinks go.
In his presentation i mentioned above available in youtube, he speaks about 30%of people who are negative and still have lyme.

Hoping on this doctor. I had appointments with other internists supposedly with some experience in lyme, and the majority of them simply said: no, you dont have lyme, if you had lyme you should be in a weelchair. I cant believe there are so many ignorant doctors out there. But not only ignorant, dangerous also...

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 4/4/2018 8:23 AM (GMT -6)   
From what I see here and read in the studies (even ones by the IDSA / NIH) it looks more like 70% have "negative" interpreted tests but still have Lyme.

Good luck to you.

Sounds like you have a good start.

isitlyme
Regular Member


Date Joined Mar 2018
Total Posts : 110
   Posted 4/5/2018 4:43 AM (GMT -6)   
I just made a big mistake. I only sent the samples for Seraspot and Elispot. Didnt sent the CD57 samples. Might have to ask Arminlabs to send the samples kit again.

Any chance to get positive results from Seraspot or Elispot Borrelia?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 4/5/2018 2:10 PM (GMT -6)   
isitlyme said...
I just made a big mistake. I only sent the samples for Seraspot and Elispot. Didnt sent the CD57 samples. Might have to ask Arminlabs to send the samples kit again.

Any chance to get positive results from Seraspot or Elispot Borrelia?



Yes, those two tests are good.

I wouldn't worry about the CD57 - isn't necessary for diagnosis...and in fact many LLMD's don't use it.
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

isitlyme
Regular Member


Date Joined Mar 2018
Total Posts : 110
   Posted 4/5/2018 3:34 PM (GMT -6)   
Thank you for assurance Girlie. By the way, do you know or anyone known if someone got akathisia from lyme. I have extreme akatizia in feets and legs.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 4/5/2018 5:11 PM (GMT -6)   
I haven't seen that symptom yet...but I wouldn't put anything past lyme and co's.


I did read that it can be a side effect of antipsychotic meds antimetics and some antidepressants.

Are you on any of those?
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 2:43 PM (GMT -6)
There are a total of 2,995,171 posts in 328,204 threads.
View Active Threads


Who's Online
This forum has 161320 registered members. Please welcome our newest member, nighowl.
308 Guest(s), 9 Registered Member(s) are currently online.  Details
Michelejc, LMC92346, brrogers10, oceanfisher58, browntrout, nighowl, AnxietyKelller, Progressing, ShinytopPC