So dizzy and foggy headed

Also says its uncommon for Absence Seizures to continue into adulthood. But it does say it can happen at any age. This symptom started just over a year ago for me.. Idk! Hopefully neurologist can help me out... or Ill chalk it up to the Lyme Disease.

www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/absence_seizures_134,16/

Trav - I'm sure she is not Lyme Literate but it will be good to see her anyways to rule out this symptom and or other ones that might not be caused by my Lyme Disease. Every symptom I have in my life won't be caused just from Lyme Disease. But I do believe this symptom is from my Lyme Disease. If she can point me towards a logical explanation with proof and why this symptom is happening, then that would be good. Or if there is something she can do to eliminate it - great. But if she can't then I'll be the judge of whether this symptom is Lyme related or not - not her! Just covering my basis. What if it is a seizure thing that can be proved by a EEG test and controlled with a medication? So we shall see.

Interesting you had this symptom too! Does it sound like exactly what you experienced? "Brain zaps" I call them.. grab your head for a split second, feels like you lost your self for a split second? It sucks. Probably caused by Lyme for me as I'm pretty Lyme has taken over my brain based on all my symptoms.. hard to walk at times, 24/7 off balance, poor concentration, bad brain fog, headaches sometimes, dizzy, tired...

JessicaMommy,

I'm also not completely sure if that's what it is but I did have one more severe episode as I wrote and I could imagine I had a blank stare for a while as it felt like my brain reset and it took me a while to get my bearings again. Then I thought that the minor incidents could be like the start of a seizure or a very minor one. But again, as Traveler said, you have to treat the underlying illness to get rid of the symptom and I'm not sure a Neurologist can help with that. I would be very interested to see what she has to say though. My Neurologist told me that part of the problem is that I drove myself into the ground trying to keep up at work while very ill and I'm now in a severe burn-out situation as well.

I also went 5.5 years undiagnosed. I put a link to my story in the signature, if it worked, in case you're interested. In retrospect I think the biggest mistake I did with my treatment is that I tried to live a normal life with work and going out and I fear I wasted an opportunity to get better with abx. It's very important to try and minimize the stress in your life and focus only on getting better if you have that option. Constant stress raises cortisol levels which is detrimental to the immune system. I wish I would have taken it more seriously from the beginning.

Traveler,

It's not an antibody test though, it's looking for the response from the lymphocytes or white blood cells. It's a bit different from looking at an antibody response. They claim the Lymphocytes react much faster and are a better indicator of an active infection as they disappear faster after an infection is over compared to antibodies.
I'm aware how poor the other tests are, over the years I have done 5 WBs and 6 ELISAs. Before, after and during treatement and they were all negative. I only ever tested positive on the EliSpot. In the paper on LTT they claim a sensitivity of 89.4% and a specificity of 98.7% from 1480 patients.


For those fit to read I copied some snippets from the paper I linked about the Lymphocyte Transformation Test:

Abstract

"Borrelia-specific antibodies are not detectable until several weeks after infection and even if they are present, they are no proof of an active infection. Since the sensitivity of culture and PCR for the diagnosis or exclusion of borreliosis is too low, a method is required that detects an active Borrelia infection as early as possible. For this purpose, a lymphocyte transformation test (LTT) using lysate antigens of Borrelia burgdorferi sensu stricto, Borrelia afzelii and Borrelia garinii and recombinant OspC was developed and validated through investigations of seronegative and seropositive healthy individuals as well as of seropositive patients with clinically manifested borreliosis. The sensitivity of the LTT in clinical borreliosis before antibiotic treatment was determined as 89,4% while the specificity was 98,7%. In 1480 patients with clinically suspected borreliosis, results from serology and LTT were comparable in 79.8% of cases. 18% were serologically positive and LTT-negative. These were mainly patients with borreliosis after antibiotic therapy. 2.2% showed a negative serology and a positive LTT result. Half of them had an early erythema migrans. Following antibiotic treatment, the LTT became negative or borderline in patients with early manifestations of borreliosis, whereas in patients with late symptoms, it showed a regression while still remaining positive. Therefore, we propose the follow-up monitoring of dis-seminated Borrelia infections as the main indication for the Borrelia-LTT."

Part of intro

"The direct detection of Borrelia by culture or PCR has a high diagnostic value in the case of a positive result, but a negative result does not rule out Lyme borreliosis [4, 5].

There is currently no method available which, in addition to the serology, answers the question as to whether a specific case is a status post Borrelia infection or active borreliosis.

Each humoral immune response to an infection requires a specific cellular immune response with clonal proliferation of various antigen-specific lymphocyte subpopulations. Of central importance here are antigen-specific T helper lymphocytes (CD4+ TH cells). In addition to effector T cells, long-lived T and B memory lymphocytes are formed. In the presence of antigen-presenting cells and protein antigens, specific CD4+ T memory cells also proliferate in vitro. The lymphocyte transformation test (LTT), also known as the lymphocyte proliferation or lymphocyte activation test, is based on this principle [7]. Shortly after the discovery of B. burgdorferi, it was demonstrated that blood lymphocytes from Lyme borreliosis patients proliferate in the presence of Borrelia lysates [8, 9]. Published data on the diagnostic value of the Borrelia-LTT, especially in seronegative patients, can be found beginning in 1988 [10-17]. However, false positive LTT reactions have also been described [18-20]. Important for the motivation of our investigations presented here were observations that positive LTT reactions of blood lymphocytes to Borrelia antigens declined significantly or were negative after antibiotic treatment of Lyme borreliosis [12, 14, 16, 21]. This leads to the hypothesis that Borrelia-specific T helper cells circulate in the blood in detectable numbers only during an active immune response against Borrelia and persist in a non-florid infection in lymphoid organs."

Ohryan - I'll check out your story.

Yeah, I was the same trying to keep up with work life etc all these years and living through my off balance symptoms etc. My doctor told me it was anxiety for the last 5 years and to take more time for myself etc. because all my tests came out normal. I knew it wasn't anxiety and p****d me off every time she said that.


If these are seizures I've been experiencing occasionally over the last 1.5 years I think now.... is it going to hurt me? It sounds really scary to me. Hard to believe it is a seizure as it doesn't really feel that extreme... just a quick split second head feeling, that I completely remember.

Ha ha! Yep I know Ohyran - but that's where I get a little lost. It's a different part of the antibody that is reacting and I don't know if it's any more reliable than any other test simply because of that - and I honestly don't have time to really sit down and study it enough right now, as it would take time from the forum. All I can say is that I'm not sure that it's any more accurate - I haven't really seen anything that tells me it is, as it's still an antibody response and Lyme is known to inhibit the immune system - but does it inhibit that part of the immune response as well??? I have very little doubt that I would have trouble understanding it if I would sit down and really study it all.

By the way, your link to your original post works!!


JessicaMommy - there are many, many different types of seizures - I've experienced several.

Do you have any pain in your brain when you have one of these?

Some seizures are as minor as absence seizures:
"Absence seizures are brief episodes of staring.During the seizure, awareness and responsiveness are impaired. People who have them usually don't realize when they've had one. There is no warning before a seizure, and the person is completely alert immediately afterward...

Atypical Absence Seizures :The person will stare (as they would in any absence seizure) but often is somewhat responsive. Eye blinking or slight jerking movements of the lips may occur..."
www.epilepsy.com/connect/forums/products-resources-helpful-links/over-40-different-types-seizures-revised

So basically, they are just a brain pause. They really aren't that unusual for these infections and toxin loads. Just see it as another symptom telling you that you need to heal.

Trav - No, my brain doesn't hurt when these episodes happen.

Ohryan - I think sounds so scary to me because I've seen my brother have seizures as a child, shaking uncontrollably and my mom calling the ambulance!

I'll try to just look at it as another symptom of my Lyme, and I need to heal Trav.

Thanks for that link on seizures , Ohryan.

Traveler, why did you want to know if I have pain in my brain when I have these episodes?

JessicaMommy,

I can't imagine taking care of children. I feel like I can barely take care of myself. It's good if you're staying at home already, I believe it increases the odds of becoming better. Another thing I try to do is to plan one thing everyday that I like to do, like going for a walk in the woods. Since we don't have a lot of energy we really have to conserve what we have and I feel that doing something other than the have-to's everyday really helps adding a little bit to the gas tank.

Traveler,

According to the study they caught 89.4% of the infected people (sensitivity) with a false positive rate of 1.3% (specificity) and that's with almost 1500 people, that's good statistics. Sounds better than the 50% WB or 30% ELISA. I guess I'm extra convinced since it worked for me and correlated well with the treatment.
As I was searching around a bit I found this presentation from the head of the laboratory Arminlabs (apparently they changed it from infectolab)
www.aonm.org/assets/dr.-armin-schwarzbach-aonm-lifting-the-veil.pdf

I haven't read it all myself, it's a 100 pages, but it contains a lot of examples from real patients that they've tested and treated. It also seems to contain a myriad of other information. I'm going to have to look at it later.

LOL! I guess I worded that sentence wrong. I didn't mean I need to heal you! LOL I was referring my sentence towards you lol


On another note : I just got a call from my family doctor office regarding the ELISA test I had done last week. It is negative. I had one done in May that was positive for Elisa and weakly positive for igm western blot.. did 3 weeks of doxy.. did another test because my doctor said because my western blot was weakly reactive it does not count as a positive. So I did a repeat in June of the test and the ELISA and Western Blot Neg... I asked for another Lyme test so it would be 6 weeks off antibiotics before testing... and just got the call today my third test is negative.

Ugh.
Was looking for 100 % confirmation and to prove my doctor wrong. I'm sure she is now assuming my first test is a false positive as I have had two more tests after that have been negative. These tests don't matter to my LLND but they do to my doctor who won't take me seriously. And of course this makes me question things.

Post Edited (JessicaMommy) : 7/29/2015 12:38:01 PM (GMT-6)

JessicaMommy said...
LOL! I guess I worded that sentence wrong. I didn't mean I need to heal you! LOL I was referring my sentence towards you lol


On another note : I just got a call from my family doctor office regarding the ELISA test I had done last week. It is negative. I had one done in May that was positive for Elisa and weakly positive for igm western blot.. did 3 weeks of doxy.. did another test because my doctor said because my western blot was weakly reactive it does not count as a positive. So I did a repeat in June of the test and the ELISA and Western Blot Neg... I asked for another Lyme test so it would be 6 weeks off antibiotics before testing... and just got the call today my third test is negative.

Ugh.
Was looking for 100 % confirmation and to prove my doctor wrong. I'm sure she is now assuming my first test is a false positive as I have had two more tests after that have been negative. These tests don't matter to my LLND but they do to my doctor who won't take me seriously. And of course this makes me question things.

I see, you're still doubting your diagnosis. I did that for quite some time since I only had a clinical diagnosis from an LLMD and couldn't remember a tick bite. Like you, I wanted to have proof and to show the doctors that they're wrong and to take me seriously. I have since given up on that because it brought me absolutely nothing but frustration. It doesn't matter if you're right, they're not listening to you because they're the doctor and you are the patient. Even if you manage to convince them, they can't help you because they have no idea how to treat Lyme except for xx days of Doxycycline. It's better to only try and deal with doctors who understand Lyme.

With your symptoms and a weakly reactive WB it's very likely that you have Lyme. I've never even had a positive WB at all, not even a single band but I did have a (clearly) positive EliSpot. I don't know your history but how the illness starts can also be an indicator of what it could be. Don't underestimate the value of a clinical diagnosis an experienced doctor can tell a lot from the history and the current symptoms.

Out of curiousity, did you get your hormone levels checked, like TSH, free t3 and free t4? What about cortisol levels?

Mine where slightly out of whack so first I thought I had Hypothyroidism, it turns out Lyme likes to mess with the hormone system as well. Taking Levothyroxine did nothing to relieve my symptoms.

What is a EliSpot? Is that the same thing as a ELISA?

I know, I find it hard to believe its not Lyme since I had a positive ELISA for both IGG&IGM and I reacted on the Western Blot IgM - only weakly but still reacted. What's the chances I would react to BOTH tests - Elisa & Western Blot if it wasn't Lyme? But then I think, false positive because that is what the criteria states!

But I've had unexplained symptoms for 5.5 years now.. so many tests. All normal. My doctor tells me I fit everything for MS but my MRIs are clean. I can barely walk some days and I'm only 27. I'm off balance everyday to varying degrees. So frustrating. I just wanted my family doctor on board with me. I know she won't do anymore than the 3 weeks of doxy whether it came out positive or not, but I still just wanted us on the same page - and not bumping heads and disagreeing with each other.

Also, it just makes me feel better picking up a strong positive - not going from weakly positive to nothing on the next two tests.

If you have a positive ELISA then you most certainly have Lyme. The ELISA test has a specificity of 99-100% (few false positives) done right so if you test positive for both IGG & IGM then it's clear, you shouldn't have any doubts anymore. On top of that you have a (weakly) reactive WB + the symptoms + the history. It will not get much clearer than that for most. Focus on getting appropriate treatment for Lyme and also consider possible co-infections.

It's great that you ruled out MS as well, it could also overlap quite a bit.

Elispot is the lymphocyte test I've been droning on about. It's developed by a laboratory in Germany and tests if you have lymphocytes reacting to Lyme as an indicator of Lyme.