By any chance, can someone please explain these test results?

These are the tests results that were provided by my LLMD that were from STONEYBROOK MEDICAL Center.

My LLMD tried to explain the results to me over the phone, however, I did not have the results sent to me at the time.

He was very confusing when he tried to explain the results to me, and I am just confused!

He kept stating you POSSIBLY have this or that, and MAYBE you have this or that....but we are going to start you on antibiotics and want to see you in 3 months.

I am very confused at this time. I do realize the CDC has different standards, so I am understanding when it comes to something stating NEG when in fact it is actually positive. But what exactly do I have??

Any suggestions would be greatly appreciated! Thank you!!!!

LYME C6
LYME NUMBER 103015

Lyme Index 0.22 (<0.91)
C6 LYME INDEX RANGES
<0.91 Neg
0.91-1.09 Equivocal
>1.09 Positive

C6 Qual Result NEGATIVE (NEG)

LYME WB.SERUM
IMMUNOLGY# 592

LYME WB IgM RESULT: (NEG)

*INDETERMINATE

IGM BANDS (kDa): 41
IgM NONSPECIFIC bands were also detected.
(34,64,66,72,93)

LYME WB IgG RESULT: (NEG)
*INDETERMINATE
IGG Bands (kDa): 41, 93
IgG NONSPECIFIC bands were also detected.
(64)

WB Comments: While there is some band reactivity, these results do not meet the CDC criteria for a positive Lyme western blot. The CDC criteria for a positive Lyme Western Blot is as follows: for IgM, at least 2 of the 3 specific bands (23, 39, 41 KDa) must be present. For IgG, at least 5 of the 10 specific bands (18,23,28,30,39,41,45,58,66,93 KDa) must be present. A Western blot that contains specific bands but does not meet positive CDC criteria is considered "INDETERMINATE" by the NY State Dept of health.

Thanks for any help with this!!

C6 ELISA is one of the most sensitive ELISA tests for Lyme and was considered for the first line lyme test which will not even require a WB.

"The C6 ELISA was found to be 100% sensitive. Four false-positive C6 results were identified in patients that had clinically and microbiologically confirmed Lyme disease but were not detected by the CDC reference methods. No one WB product showed overall superiority. The C6 ELISA shows promise as the first ELISA for Lyme disease that would not require a supplemental test such as a WB.
....
It is possible that the C6 ELISA is a more sensitive antibody test than a WB. Liang et al. (8) and Lawrenz et al. (6) reported that the early C6 antibody response produces both IgG and IgM isotypes and may appear very soon after a tick bite. Magnarelli et al. (9) compared 11 recombinant antigens in an ELISA format and determined that VlsE was the most suitable antigen for the laboratory diagnosis of LD. While VlsE and C6 ELISAs are not identical, they vary primarily in the nature of the capture antigen; VlsE is a recombinant protein (6), and C6 is a synthetic peptide which is a component of the VlsE envelope antigen (8). There are several advantages to the use of C6 antibody tests, including no interference in patients who have been vaccinated with the 31-kDa antigen (3), detection of antibodies to the European strains of B. burgdorferi (7), high specificity, and a shorter reaction time (approximately 1 h). Patients with over 12 different diseases such as systemic lupus erythematosus, rheumatoid arthritis, and other spirochetal diseases were uniformly negative by the C6 ELISA (6, 8). The high sensitivity and specificity of the C6 test makes it an attractive candidate for a primary test for LD, which may obviate the need for WB confirmation."

www.ncbi.nlm.nih.gov/pmc/articles/PMC515278/

Don't get me wrong, ALL LYME TESTS ARE BAD. But this C6 is among the better ones. The fact that you have your C6 negative (and so many INDETERMINATE/NEGATIVE WB and related tests) raises suspicion you might not have lyme. Or you have some very old lyme infection that has completely obliterated your antibody production. I guess these tests have to be considered in accordance to your clinical picture. Are you severely ill ? What are your symptoms? Someone who has the immune system crashed does not feel very well and has lots of symptoms.

Also Traveler's point about Tick-borne Relapsing Fever (TBRF) is quite important, these tests of yours are all for B. Burgdorgferi, and unfortunately this is not exactly the pathogens that are causing TBRF (those are Borrelia hermsii, B. parkerii, and B. turicatae) . You may have to draw blood again, in TBRF the antibody production varies greatly during the month (that is why it is called relapsing fever), read below:

"Acute serum should be taken within 7 days of symptom onset and convalescent serum should be taken at least 21 days after symptoms start. Early antibiotic treatment may blunt the antibody response and the antibody levels may wane quickly during the months after exposure. To confirm the diagnosis of TBRF, Borrelia specific antibody titers should increase 4-fold between acute and convalescent serum samples, and convalescent serum antibody levels should be at least two standard deviations above pooled negative controls.d Serologic testing for TBRF is not standardized and results may vary by laboratory. Patients with TBRF may have false-positive tests for Lyme disease because of the similarity of proteins between the two organisms."
www.cdc.gov/relapsing-fever/clinicians/

Post Edited (mpostelnicu) : 11/24/2015 12:49:01 AM (GMT-7)

Hello Traveler and mpostelnicu,

Thank you both so much for such a detailed response. I can see that you both took a lot of time to look into this, and I am grateful for your help!

I want to look into each of your comments in more detail so I can have a better understanding, and then get back to you. I just wanted to let you know I have seen your comments, and I did not want to be rude my not responding.

In response to your question, mpostelnicu; Yes I have been very sick. In April 2013 I was diagnosed with mono, and it took me a very long time to get better. Although I was able to function and work, etc. I was never back to my same self at 100%. I would often have low grade fevers and fatigue, however the doctors never figure it out. They stated it likely was just the mono still in me.

This past July (2015), I pretty much hit bottom. I started having paralysis in the face which affected my eyes, smile, chewing and swallowing. Within a few days, my fatigue was extreme. Within the next couple of weeks, I was to the point I was unable to walk, and had extreme muscle weakness in my arms, legs, and my entire body.

I saw a neurologist that was unable to figure out what was causing this. I was then referred to a neurologist in a teaching university.

This past week, the neurologist diagnosed me with MG-myasthenia gravis.

In the past 4 months I have been very sick. Although I have made improvements, I still have a long way to go. I am able to walk inside the house without assistance now, and can slightly do stairs with help. My vision has improved, however, it is still not 100%. I am still having difficulty chewing and swallowing, as my muscles are very weak.

In addition to seeing a neurologist, I had contacted an LLMD to consider the possibility of this being lyme disease. I had the blood tests a few weeks ago. I do not recall any tick bites, however, I do spend a lot of time outdoors and I also work outdoors. My work required me to travel throughout the country, so I was often in areas that had ticks, and I recall brushing ticks off of me in the past. Just do not recall any bites, or any immediate sickness after these events.

On the same day I got the MG diagnosis last week, my LLMD contacted me and diagnosed me with lyme disease.

So, now I am very confused. I have symptoms of both and need to start treatments. However, I want to be sure I actually have lyme before any treatments due to also needing to be treated for MG. So after reviewing the blood tests, I just wanted to be sure it actually indicated positive for lyme, as my LLMD was very confusing.

Again, thank you both so much for such a detailed response. I am going to take the day to look into this and get back to you. Have a wonderful day!!!!

If it were me, I would listen to your LLMD that said "you have lyme." I would now ask what should we do? You need to start treatment.

Good luck and come and ask questions. That is how all of us are learning.

Traveler said...
I would disagree with the C6 being so superior. If it was, then why are so many people still healing with Lyme treatments even though they have a negative C6? It's still an antibody production issue.

Lyme inhibits the immune system so it's not producing the antibodies to fight the infection - so it doesn't matter how sensitive the test is, if it's only measuring antibodies, it's not going to be accurate for any infection that can suppress antibody production.

Traveler, you haven't read all my post, that is exactly what i said below and the reason i asked for more info on symptoms.

Anyway, my suggestion is to follow what the LLMD tells you. We are a community of patients here, not doctors, so we can provide some suggestions / hints, or point you towards an LLMD in case you don't have one.

If you ask me, it is really simple to prove or to disprove you have Lyme. If your tests are indeterminate and if your LLMD will decide to prescribe ABX , like doxycicline, and you start herxing, then you know you have Lyme, it does not matter what the tests say. There are virtually no other diseases except for Lyme and Syphilis where you body would respond in such a way to antibiotics.

You can find more info about herxing here
www.healingwell.com/community/default.aspx?f=30&m=1606610

mpostelnicu said...

Traveler, you haven't read all my post, that is exactly what i said below and the reason i asked for more info on symptoms.

Boy, you're right, Mpos! I owe you an apology!! I was in a rush and doing too many things at once, so I read only the first half and skimmed the rest of your post. I actually know better than that.