Seems it All Still Comes Back to Lyme/Co-infections

Just received a "bunch" of blood tests back, and with all that was looked into, it hit me that everything seems to still be Lyme doing strange things.

Was worried about possible vasculitis, but all ANCA tests came back negative. Also, all globulins are in the normal range (A.E,G.M) and serum protein electrophoresis are all normal. Homocysetine just under 12, which is fine. PTH not bad at 33. Even red and white blood counts are all normal for first time in a long time. Electrolytes all in normal range. Creatinine still raised, but that relates to kidney problems I've had for a good while now. Have to lower it.

Point is, despite all the tests in good range, I feel as bad as I have in a few years. And that leads me back to to the same old story that has been going on for years - Lyme. Maybe it's causing an inflammatory reaction, but CRP and SED rate are normal.

In so many years of dealing with this, I've been worried about so many things. But, in my mind, it does seem to come back to Lyme as I can't fail a different test. Even complements C3 and C4 are in low normal range, yet there are autoimmune symptoms. Have read about seronegative autoimmune many times, but it just seems something would one time show up. I've probably had autoimmune markers and tests performed 20 times. You name it, I bet it's been done.

So, that seems to leave me back where I have been, and I have no idea what to do. Can't take much Bicillin because of kidneys and that was what seemed to help years ago. Whole point of this is we worry about so many things that maybe we can't (or I can't) see the trees from the forest.

Anyone been through similar? I'm tired of trying and guessing.

I know that your kidneys limit what abx you can take…I can’t remember - which one you can take and is there a second one you can add - I’m thinking two abx is too much for your kidneys to filter?

I just read your post again - it’s bicillin that you had been taking.

Is IV abx also hard on kidneys?

Geez - You’ve had a tough time for so long - just really hoping for you to catch a break.

Agreed w/ Garzie. Many autoimmune conditions arent named and they dont know how to test for them. In addition, I do believe there's a continuum from autoimmunity to infection. Infection can trigger it, so you may be dealing with both. I've tended to notice, and Dr K has alluded to this as well, that most autoimmune conditions triggered by infections take this "nonspecific" form.

For what its worth, mary ruddick claims to have been in kidney failure and gotten it under control w/ her super strick gaps/keto diet.

What about treating EBV? You clearly had some sort of reactivation w/ those high IgG titers, the daily fevers and the fatigue. That seems like low hanging fruit.

My friend had reactivated EBV and beat it using a program of NAC, immunoplex, monolaurin, and lysine. Dunno if you can take all of those w/ your kidney issues.

WBF - I have a call into my doctor about disulfiram. Also am still working with Biologix and have a phone consult in a week.

Am trying to see what is possible to use considering kidneys, as Girlie mentioned. As far as autoimmune, your point is well taken, garzie. I’m not ruling out that aspect, but am wondering if Lyme and/or coinfections are causing autoimmune reactions, rather than this has become a full autoimmune disease.

For instance, morning anxiety at about 8 am is back and coincides with ramp up of other symptoms. Everything feels as it did a couple of years ago with that anxiety, fatigue stomach pain and loss of elasticity in skin. Today I’m going for a punch biopsy of area that swells around my ankle and gets a rash after being on my feet all day at track meet. Then it goes away in a few days. Swelling dissipates overnight.

As far as EBV, dcd, the doctor wants to do another EBV-DNA test. Still trying to figure out how that plays different than antibody test. I do not get fevers this time, only fatigue. I’ve used lysine in low doses before (below 500 mg) as any more impacts kidneys. Will look into NAC and diet changes

Not counting out autoimmune but rather whether Lyme is causing autoimmune symptoms, such as toes burning, or if Bartonella is in play. So confusing.

The theory on autoimmune reactions makes sense. Something I’ve never thought to research but will is the question on how all this would or if it would affect autoimmune testing.

Can you have an autoimmune reaction but testing for it stays negative?

Right now, a lot of former symptoms have returned, including the bad morning depression and anxiety, sling with fatigue. No fever. That had all improved but has now slowly come back. That’s what leads me to believe this is Lyme related or Bartonella. The bottom of my feet hurt worse, along with toes. Tie that in with anxiety and it seems to play out as Bart. But who knows?