Newbie feeling lost

Hi Spinal!
First of all, welcome to the forum! I'm new to Lyme myself, but the older members on here are extremely valuable sources of knowledge.

I was diagnosed with persistent Lyme last February after having it since age 4. I have gone 15 and a half years with Lyme disease and no fever. I'm not familiar with Anaplasmosis, but these chronic infections trick the immune system into not fighting them, so fever would not be expected. As far as wondering if you haven't been feeling healthy your entire life, I can say that is exactly what happened to me. I ignored my joint pain, constant fatigue no matter how much rest I got, and cognitive impairment for 9 years before realizing that something was wrong.

Lyme is super confusing because of the lack of research, but more and more reliable research is coming out that is regularly posted by the more scholarly members on Healing Well. You are not alone in this, as we are all experimenting and researching, trying to figure out this mess. One of the more knowledgeable members will probably reply soon, but I just wanted to welcome and encourage you!

spinal_31 said...
Hi all, this might be a little all over the place, but I feel like I'm in a group of people who understand.

I enlisted the help of a functional MD for severe postpartum depression that I felt other practitioners weren't taking seriously/weren't examining the root cause of. She did a number of tests and in the process also uncovered positive Lyme-specific bands and evidence of an active Anaplasmosis infection (stated she has never seen numbers so high for the latter). She suspects that my whole history of anxiety/depression and current brain fog could be caused by these infections.

I'm starting to question everything -- namely, have I felt like crap my whole life and just don't know what it feels like to feel good? I've had kind of a traumatic childhood, so I don't always feel "connected" to my body enough to name symptoms, if that makes sense. Here I am thinking: has Lyme caused me to always be tired, have no energy, have some baseline of general malaise that I have just taken as normal?

Anyways test results ….

Doctor says I have Lyme-specific bands, but then I read this website: https://www.columbia-lyme.org/diagnosis and it says the three bands that I have, 41, 66, and 93, could be cross-reactive from other sources.

Quest turned up:

* 41 and 93

MDL turned up

* 41 and 66
* positive c6 ELISA peptide for Lyme
* positive igg Anaplasma (>= 1:640 dilution positive - doctor says super super high, indicative of active infection)
* Borrelia inconclusive

But if it says I have an active or recent Anaplasmosis infection with super high numbers, how come I don’t have/didn’t have fever, chills, etc? It makes me feel like it’s fake. But then the numbers are plain as day. I’m bewildered.

I'm new at this and I feel like entering the Lyme world is like entering the twilight zone. What gives??? What is the fake news? Are these labs reliable? What is the f\*&\^ing deal?

Welcome to the forum.

Your lab work does show at least one Lyme “specific “ band:
ie: 93.

If you have unexplained symptoms - the lab work backs up a Lyme and CO’s diagnosis.

Thank you. I did gather that it at least seems generally positive given all the results plus some weird symptoms. I think the high level of Anaplasma makes me most puzzled.

spinal_31 said...
Thank you. I did gather that it at least seems generally positive given all the results plus some weird symptoms. I think the high level of Anaplasma makes me most puzzled.

unfortunately the level of antibodies does not necessarily have a direct relationship to the activity of the infection - especially in chronic illnesses - as its actually more a measure of what the immune system is doing.

so it doesn't necessarily mean anything - other than anaaplasma is a likely infection.

antibodies to annaplasma are also known to persist at high levels in some people for several years after actute infection

the CDC (which should be viewed as a conservative source - rather than the last word in up to date info) state the following

The CDC said...

Persistent Antibodies
Antibodies to A. phagocytophilum might remain elevated for many months after the disease has resolved.
In certain people, high titers of antibodies against A. phagocytophilum have been observed up to four years after the acute illness.
Between 5–10% of healthy people in some areas might have elevated antibody titers due to past exposure to A. phagocytophilum or similar organisms.
Comparison of paired, and appropriately timed, serologic assays provides the best evidence of recent infection.
Single or inappropriately timed serologic tests, in relation to clinical illness, can lead to misinterpretation of results.

fortunately the treatments for Lyme also largely cover anaplasma - so it should if anything simplify treatment - at least compared to say a protozoan co-infection like babesia which requires entirely different types of drugs

all the best !

its quite common to have these thoughts and the fact that there has been do much denial and misinformation around these diseases for so many years only adds to the confusion - there is also the common mental health impacts from lyme and co-infections that typically include - anxiety, depression and poor executive function (logical decision making) - as a result many people oscillate one way and the other endlessly - causing themselves additional undue stress

the fact that this was found "accidentally" does not mean the evidence is any less compelling or valid
in fact Lyme is dramatically under-diagnosed - and many people receive multiple misdiagnosis and take many years to receive an accurate diagnosis - if at all. usually its kind of "accidental" - after years of being told they had "CFS" or Fibromyalgia - or depression - or "its all in your head" a patient perseveres or finds a new doctor who runs more tests and lo and behold - lyme turns up
so in this respect you case is actually very typical

the way i would look at it is - at a high level - you have had lots of symptoms that are consistent with lyme disease for many years - and never had a satisfactory explanation for what is causing them - at this point you have a pretty clear indication of a cause that would explain all of these symptoms - and now you have a chance to do something about it that has the potential to dramatically improve your quality of life.

while the alternative is, at best, status quo - or waiting for the next weird symptom or complication to come along

it is natural to be fearful of the challenge that may lay ahead and the unknowns - and many people experience denial in this stage - not anting it to be true - or being scared to face what might need to happen next - but to my mind, the equation is highly favourable in terms of going forward with treatment - vs not doing so.

many people never get a clear black and white diagnosis - and so have to navigate this stage without complete certainty - or stay stuck.

in your case the positive C6 ELISA is as close to a black and white as you are likely to get - and is clearer than most of us get.

i hope its of some help

all the best!

One thing I’d like to add here sorta paradoxically to my recent activity in other posts..

Always good to make sure there’s no recent history of water damage in your house or a recent mold issue. Mold is never good for mental health.

A lot of us here fall into the complex chronic illness category, which is often a combination of several issues (infections bacterial, viral, parasitic etc. toxicities, poor nutritional status, stressful life situation yatah yatah). Which often involves a comprehensive approach more than just taking an antibiotic for Lyme (not that that can’t work - everyone’s body is different - the more complex symptoms often the more complex the burden on body) - but “Lyme” has the most brand recognition if you will and serves as the foundation of this forum.

Hope the doxy is helpful for you.