My Lyme test results and symptoms.

Hello everyone. I have been reading posts here, and on other forums, for almost two years now.
I haven't written a single post until today. This was because I didn't have any idea what was happening to me, and I didn't want to be one of the many who post in paranoia.
Well, I believe now is a valid time to say something.

I've received two tests for lyme so far. My first test in March of this year showed that my igM levels were at the high end of the equivocal range. My primary at the time said this was likely a very recent infection. As in I was just bitten or exposed to lyme within weeks leading up to the test. (I'd been experiencing symptoms for a year and a half before testing)
My second test, done two weeks ago, also showed igM levels in the high end of the equivocal range.
In addition to the igM, my second test showed something new; igG P41 AB is present.

I have not yet gone in for my follow up appointment after the second test. My question to this group is; Has anyone else been diagnosed with lyme under similar or identical test results?

I am trying not to get my hopes up, but these tests have been the only thing that have actually shown something abnormal during my almost two year medical workup. I've had an inhumane amount of testing, imaging, and bloodwork done during this time period. I've thought I had MS, ALS, or even some kind of cancer due to the wide range of symptoms. Many of which are frighteningly debilitating at times.
There have been many months where I thought my body was simply shutting down and preparing to die.

My symptoms began with what was diagnosed as a silent migraine. One day my left eye had an aura in it, the left side of my face and left arm went numb. This passed in a few hours, but all the other symptoms began to slowly show up after that event, usually affecting the left side of my body only.

Numbness/tingling sensations.
Pain in muscles/bones/tendons/joints.
Chest pain that radiated through to my back.
Tenderness in armpits.
Muscle twitching ALL OVER my body.
Extreme fatigue.
Brain fog.
Intermittent nausea.
Ringing in ears.
Feeling of pressure in ears.
Light sensitivity.
Eye pain. Facial pain.
iritis.
Anxious feeling.
Sensory overload.
Random adrenaline rush/rapid heart beat.

Those are just the major symptoms off the top of my head, but you all get the point.

Of course, I know I can't get a diagnosis from anyone on the internet, but I'd like to know if any of what I've described above rings any bells. If anything sounds familiar, or identical in any way. If your test results were similar, or if anyone has any insights. I greatly appreciate any input, and I hope you're all doing well.

if you would like you can post an image or scan of your results here
https://imgbb.com/
and put the link in a post below and i am sure people will give you their read on them.

its a lot easier for people to interpret and offer advice or opinion if they can see the test itself as there is more information there than you can easily convey in a forum post

looks like both sets of these tests were some form of lyme antibody test - like an ELISA or EIA - with a single antigen - followed by western blots

the western blots are pretty standard - but even looking at their website - i could not see exactly which antigen the antibody test used.

generally the single antigen tests have poor sensitivity( 20-50%) but good specificity (over 90%) - so the fact that you have a positive result on one of these supports a lyme diagnosis as does the band 41 IgG on the later western Blot.

the early IgM later IgG rule is based on outdated assumptions around lyme disease and chronic infections and does not work in practice for lyme.
in addition incomplete sets of western blot positive bands vs the CDC criteria ( which even the CDC says should not be used for clinical diagnosis) is very common.

based on the above and symptom pattern i would have very high suspicion of lyme disease and as a result would suggest you seek out a LLMD

So I saw my infectious disease specialist today. They said my test results (above) are not considered a positive by the official standards, but this Dr still suspected Lyme and told me to order the igenix test kit, which they said they will fill out and draw the samples for.

Has anyone else been in this situation? Where your doctor suspected Lyme, but couldn't diagnose it or move on to the appropriate treatment they want to provide, just because the insurance companies won't cover it if it can't be diagnosed?

This gets more confusing every day!

Thanks Garzie.
Were you diagnosed under similar circumstances? With similar test results to mine?

Will an LLMD be able to make a diagnosis with the same test results? I assume they'd also have the same limitations around diagnosis as any other doctor for insurance purposes.
Aside from being more knowledgeable about lyme, what can an LLMD do that my specialist, who already thinks I have lyme, cannot?

Avi80r said...
Thanks Garzie.
Were you diagnosed under similar circumstances? With similar test results to mine?

Will an LLMD be able to make a diagnosis with the same test results? I assume they'd also have the same limitations around diagnosis as any other doctor for insurance purposes.
Aside from being more knowledgeable about lyme, what can an LLMD do that my specialist, who already thinks I have lyme, cannot?

i had a positive test for lyme from Armin Labs - using the Tickplex test.

UK GP's are told to disregard non NHS labs - and so do not acknowledge a lyme diagnosis - and instead offer no diagnosis and simply say that "the system has failed you - i suggest you look elsewhere" which is code for "we don't know what to do and so don't really want you on our books".



its not so much that a conventional ID doctor can't prescribe what a LLMD would
its a case that their belief system and training is at odds with what is now known about the disease and so will not diagnose or prescribe or treat the way a LLMD will.

due to very well documented issues with the tests - false negatives are very common - and as a result all the guidelines say that negative tests cannot rule out infection. Despite this most conventional doctors will not treat without a totally clear positive test result - whereas LLMDs make clinical diagnosis using test results only as potential confirmation.

typically even if a conventional doctor does give a Lyme diagnosis - they will treat with a single antibiotic for a short period - which has been shown to be ineffective for a large proportion of lyme patients.

after this short course of abx - if you still have symptoms or relapse - they will call it post treatment lyme syndrome and not offer further anti-microbial treatment.

this is the typical path - there can be a few exceptions - but from my experience and many many others here - they are rare

i know there is a lot here to get your head around - which may be at odds with what you thought going into this - eg
-that doctors don't know much about or are miseducated in what they are dealing with
-that the tests don't work well

i had the same difficulties - took me 4.5years and around 20 doctors to get a diagnosis despite asking if it could be lyme in the first 4 weeks and being scoffed at - so just trying to save you time and years of sickness.

Hi Avi80r- I'm in the same boat as you, so had to reply!! This is my first post. I have many of the same symptoms as you... among some others such as numbness in my tongue!! Totally alarming. These symptoms have been going on for a year and a half. Prior to that, I have had a stiffness/soreness in my neck for 12 years- which I always attributed to some sort of disc issue, or something (and now I suspect was lyme all along). It wasn't until I met with a naturopathic doctor that learned anything about lyme and about how the tests traditional hospitals gave could be false negative. I have finally received some lab results from Igenex... 5 of the 6 bands were positive for IGM. But all negative for IGG. I literally just got off the phone with my infectious disease doc and was brought to tears by her unwillingness to acknowledge my Igenex tests. She says that because there is no IGG, that lyme is only a possibility... that the Igenex tests don't make sense. She can't make a formal diagnosis, and doesn't feel comfortable treating me. I've had so much bloodwork for everything under the sun. The labs she sent to Quest Diagnostics for lyme were all negative. And finally I get some positive results from a lab many see as the most trusted... she doesn't want to believe it, or doesn't want to understand why there might not be IGG positives. I have spent all morning trying to find a LLMD. I'm totally frustrated and feeling defeated. Anyway- take care and please keep us posted on your journey. I'm feeling happy that I found this forum for support!

sarava39 said...
Hi Avi80r- I'm in the same boat as you, so had to reply!! This is my first post. I have many of the same symptoms as you... among some others such as numbness in my tongue!! Totally alarming. These symptoms have been going on for a year and a half. Prior to that, I have had a stiffness/soreness in my neck for 12 years- which I always attributed to some sort of disc issue, or something (and now I suspect was lyme all along). It wasn't until I met with a naturopathic doctor that learned anything about lyme and about how the tests traditional hospitals gave could be false negative. I have finally received some lab results from Igenex... 5 of the 6 bands were positive for IGM. But all negative for IGG. I literally just got off the phone with my infectious disease doc and was brought to tears by her unwillingness to acknowledge my Igenex tests. She says that because there is no IGG, that lyme is only a possibility... that the Igenex tests don't make sense. She can't make a formal diagnosis, and doesn't feel comfortable treating me. I've had so much bloodwork for everything under the sun. The labs she sent to Quest Diagnostics for lyme were all negative. And finally I get some positive results from a lab many see as the most trusted... she doesn't want to believe it, or doesn't want to understand why there might not be IGG positives. I have spent all morning trying to find a LLMD. I'm totally frustrated and feeling defeated. Anyway- take care and please keep us posted on your journey. I'm feeling happy that I found this forum for support!

Hi Sarava39. Thank you for sharing your story. I hope that you can quickly find an LLMD who will acknowledge your igenix test results. What a relief it must be to simply have the test show something! That, to me, would be the best "bad" news ever.
My first lyme test was also at Quest, and revealed nothing. My next two were done at Labcorp, and that's when things started to show up. But apparently not enough to be a CDC positive. Oddly, my primary care still prescribed me antibiotics with those results. Totally confusing.

I am currently awaiting delivery of my test kit from igenix, and I feel like my entire future hinges on the results of this test. It's such a setback when test after test reveals nothing, but even worse when your doctor will not or cannot help you.
I have felt like I'm going crazy during this path to find answers, but I do find some comfort in knowing that I am not the only one.
I'll post some updates when I have them. And I'll keep an eye out for your updates as well.
Try not to get frustrated, and keep moving forward no matter what!

Hi to both Garzie and Avi80r! Sorry, I have no idea how quote the post that I'm replying to... maybe one of you can explain. I live in southern MA... down close to Cape Cod. I've called some Dr's in the area and have not received responses yet, so if you know of any good ones to reach, please let me know! Avi80r- best of luck with your Igenex kit... I know how that feels... awaiting the kit and having hopes hinge on the test results!! We will both put one foot in front of the other and stay positive!!

On a related note, Dr. Rawls is hosting a free webinar about Lyme testing: https://rawlsmd.com/webinars/chasing-a-diagnosis/?utm_source=master%20rawlsmd%20segment%20-%20%5Blive%20-%202-26-17%5D&utm_medium=email&utm_campaign=webinar%20%2374%20chasing%20a%20diagnosis%209.15.21%20-%20promo%201%20%28R7vKyN%29&_kx=WUVQUsb8o2nE6gyHFae4ciEF9wsCFnxCk1jS914e6hw%3D.kAvDrP

Hi BeStill - just wanted to welcome you to the forum.
I’m glad you are going to the clinic and getting an evaluation.

Lyme is known to cause the following which may be worth looking into

palsy of cranial nerves - there are around a dozen of these nerves - the most common one being of the nerve that serves the muscles of one side of the face - commonly known as bells palsy and is a temporary partial or full paralysis of that side of the face.

the tongue is also served by a another cranial nerve so that could be the cause here also.

it is also famous for causing radiculitis - which is inflammation and dysfunction of the nerve serving the limb where it exits the spine near the neck - causing pain, numbness of partial paralysis of the affected limb - also usually temporary.

this presentation is especially common in Europe and was referred to as Banworth's syndrome - long before they knew about borrelia causing lyme - instead it was known as a tick bite associated syndrome with a triad of symptoms:

The most common presentation of European Lyme neuroborreliosis is the triad of Banworth's syndrome (lymphocytic meningitis, cranial neuropathy, and painful radiculitis) rather than aseptic meningitis, which is seen more commonly in North American disease.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3020460/

Post Edited (Garzie) : 9/13/2021 4:01:12 AM (GMT-6)

I forgot to mention, I didn’t notice the numbness made it hard to swallow but separately my throat had been closing up at times last week (hasn’t happened in the last few days) but that of course made it uncomfortable to swallow.