No More Lyme - But Still Sick

So I finally paid the $1,000 for the new lyme and co test with an EBV panel as well. My doctor says that after 5 years of on and off treatment I no longer have an active infection and my remaining symptoms are probably neuroinflammation, high EBV reactivity, and maybe something else.

He's supposed to send over a treatment plan but it sounds like it's going to not necessarily be a viral protocol but stuff to reduce inflammation, increase neuroplasticity, and support wellness.

My symptoms are brain fog, depersonalization (feeling like I'm not fully in my body), cognitive issues (memory, etc.) depression, and anxiety.

Has anybody gotten rid of lyme but still had to deal with this sort of thing?

@bryguy27007 we might be able to provide better responses and opinions if you posted some of your newest test results (anonymized, of course).

Have your symptoms changed over time? Did you have other symptoms that were resolved with treatment? (Your signature mentions specific antibiotics that you were on...)

It's never a bad idea to seek a second opinion from another doctor, but if this doctor is the one who has treated you previously, they probably know a lot more about your situation than those of us on the forum, so I would assume that they are basing their opinion on something concrete.

@tickbite666 has a good point about testing being unreliable, but I think that changes *over time* in lab results, combined with changes in symptoms, can be useful in obtaining a clinical diagnosis.

Testing for Lyme and co-infections is not very accurate, but I personally reject the notion that this means that testing has no significance whatsoever.

I actually don't agree with some of the comments here on this board. I do believe that an infection can be gone but that you are left with damage from infection. Definitely!
I also did not agree with a different comment elsewhere that said the infection did not persist over time/treatment and was autoimmune at that point, as certainly infections have been proven and shown to persist for very long periods of time, despite ongoing treatment.

You see - I believe that an infection can and does persist after long periods of treatment, but I also believe that we can knock down an infection but be left with recovering from damage, which can be confused with still having a persistent infection.
The trick is - figuring out which is which! Or, worse, a combination of both! That is, indeed, a challenge.

To answer your direct question, yes - I personally believe that things like depression and anxiety (and fatigue) are very challenging to resolve after knocking down an infection. From the people I know, those tend to be the most lingering symptoms (but obviously that will vary with people).

From my personal experience, I struggled with this with my one of my kids. I finally started this kid on a neuro-supportive supplement this summer, and the effects from such were... remarkable! It turned him from a non-functioning kid to completing half year of a school without sick days from lyme/etc... the first time in 6 years. This was supporting him in a functional manner, not going after whatever infection he may or may not have.

Obviously, there is a lot more to this than your brief post, and you alone would be the best one to make that decision on your doctor. This is just my opinion, but I appreciate that your doctor is looking at supporting your body in a functional manner, instead of just throwing anti-whatever at it. I do believe in a functional approach to healing (which may or may not include anti-whatever as part of the protocol).

Wishing you the best.

1000Daisies said...
I finally started this kid on a neuro-supportive supplement this summer, and the effects from such were... remarkable!

I'm curious: what was the supplement?

Thank you, I skimmed through the posts and am going to read them more in depth but I just wanted to address the testing first. I'm open to the possibility that my lyme doctor may be wrong but I want to provide more info. I did test positive for lyme at the beginning of my journey and that along with the clinical diagnosis provided the DX for lyme. I have done basically everything including years of traditional abx combos, 5 months of disulfram, years of herbal antibiotics. I did everything that should have erridacted lyme and co (including things to treat babesia and bartonella). I was one of 2 patients out of the thousands that he's treated that didn't get better when we "should" have.

This test is the new LymeSpot test from InfectoLabs that my doctor is using once patients have reached the end of their treatment and he is using it as confirmation that there should be no active infection (I may not be explaining it in the same way he would, just off my memory from the meeting). I can post the test results here or at least describe them in detail if that would be helpful. I wasn't feeling all the way better (although we've made a lot of progress) but we decided to do the test to see if it was more likely lyme and co that were the cause of that, or if it was potentially damage from the disease (described to me like I might have a brain injury from having it for so long), neuroinflammation, and perhaps a different virus like EBV activating my immune system.

I'm looking into all of your posts now and like I say I'm open to the possibility that he's wrong but I do have trust in him even if we occasionally disagree. Perhaps it would be prudent to stay on low-grade herbal abx just in case while doing some of these other recommendations to improve functioning. I'll try and respond more detailed to people but this seemed to really create a lot of strong opinions (I get it, I get strong opinions with lyme too).

I'm not familiar with that specific test, but many including myself do not believe eradication is possible in late stage Lyme (at least with current treatment options).

I would not discount EBV as a factor and maybe that can be addressed in some way.. however, for the most part I think you can say you've done enough antimicrobials, and that your treatments would be more worthwhile if they focused on rehabilitation and immune modulation.. probably would have much more success in reducing "neuroinflammation" that way. I guess in the end I kinda agree with your doctor there.

Brian said...
I was one of 2 patients out of the thousands that he's treated that didn't get better when we "should" have

This sounds fishy to me.. I suspect he's given that line to more than 2 patients if he's really treated thousands.