New APOE4 homozygote

[Nancy]

One way most Lyme experts can tell if you have the infection or not is they test your cd57 killer cells, if the regular Lyme test is negative, which it often is even when you have it. Like Slacker said, it is complicated to test for. You have to test at just the right time in the infection. But you can check the cd57 cells anytime as an indicator. The lower they are, the sicker you are with it. The ILADS doctors know this. A regular doctor or infectious disease doctor typically does not.

[Julie G]

Welcome Lars! You've already gotten great info from our members. I'm uncertain how frequent false positives are for the Borellia burgdoferi, but looking at your clinical picture becomes critical in determining if you really have an infection. Look up symptoms of Lyme Disease. See if anything fits. Are you chronically unwell or in general good health? FWIW, chronic hematuria (microscopic blood in urine) is often found with Lyme & Lyme co-infections. That alerted me to make this post.

I'm also a homozygote and have been suffering with an undiagnosed Lyme co-infection (Babesia duncani) for over a decade that has lead to multiple issues possibly including cognitive decline. Lyme has been found to play a part in Alzheimer's for which you're already at a higher risk. All of the strategies I've used to improve my cognition have also addressed the Lyme co-infection, but I still have a long road to healing. I encourage you to work with a physician who is knowledgable in this area. You're young and can treat it now (if it's real) to protect your cognition and avoid a lifetime of suffering.

[Tiramisu1984]

Lars, you are on the right track! Like you, I was lucky enough to get a doctor who agreed to order all the tests. I would take Lyme's seriously. There are downstream effects to not addressing appropriately.

Best wishes, Tiramisu (that's an Italian dessert I no longer eat!)

[slacker]

Nancy - great info on CD57 and ILADS organization! Lyme detection and treatment can be very controversial...

[LA18]

Nancy, regarding the CD57 count, do you know if there’s anything else (other than HIV) that can result in low values on this test? My number just won’t come up, even after antibiotic treatment for chronic Lyme. I’ve had different doctors say different things – low CD57 is specific for Lyme, or that it’s not and can reflect other things, like autoimmune disease; that it can get lower when on antibiotics, etc. I had a Neuroquant MRI a couple of months ago and it showed structural damage from mold, but not Lyme, which makes me wonder what is at the root of my problem.

Glad to hear that you were able to get rid of your infection. That’s quite a feat, I know. If you don’t mind my asking, did you treat with antibiotics and, if so, for how long?

[Nancy]

Wow, I thought it was only Lyme that affected cd57 cells. I apparently had chronic Lyme for a long time before finding out, according to my doctor. I also tested positive for Rocky Mountain Spotted Fever at that time, three years ago. I.had symptoms of Babesia so he treated me for that, too, though the test was negative. I took three or four strong antibiotics for four or so months, but he said it usually takes at least six months. The doctor I had was a Lyme expert that I found through ILADS, and my cd 57 gradually went up a lot. From 20 to around 60 in that four month period, if I remember correctly. I also took a lot of supplements that he recommended. I continued with the wormwood for a long time after, and still occasionally take it. I had to take b12 shots then, and lots of probiotics.

[Nancy]

Anyway,LAC1965, I'm very sorry your cd57 isn't going up. Is your doctor through ILADS? Are you eating healthy and doing things to improve your immune system? The antibiotics that I remember taking were cipro, azithromiacin, mepron, doxycycline, each twice per day and I can't recall the rest if there was another. Plus nystatin to avoid problems from so many antibiotics for so long. Plus very strong probiotics.

[Nancy]

I'm pretty sure it was cipro, but not 100%, I'll try to find the old paperwork. If not, something similar. But I think it was that. It was one of the common strong ones.

[LA18]

Nancy, thanks for the information. I’ve heard that Cipro can have some nasty side effects, but is generally effective. I’ve done only doxy and Flagyl so far. Interesting to know that your infection was chronic and you were able to treat effectively. How were you initially diagnosed? I am not positive on standard (and probably meaningless) tests, even though I'm close to meeting the CDC criteria. But I tested positive via IGeneX.

I have a GP and a functional med doctor who are very knowledgeable about Lyme. I’ve also seen a specialist (an ILAD doctor). They all seem to have different perspectives on the CD57 test, so I'm always curious as to what other specialists and patients have to say. The ILAD doctor I saw doesn’t view it as specific for Lyme, but I’ve read that others feel that it is (clearly relevant in your case).

Do you know your HLA-DR/DQ genotype? Mine is not good (sensitivity to Lyme, mold, and chemicals), so I’m sure this is a factor (but maybe not in your case, since it sounds like you’re generally healthy?).

I do try to eat well, but I've got a number of issues that really limit my options, including unrelenting SIBO. I suspect that it's related to the Lyme. Did you have gut issues prior to treatment?

[Nancy]

That is interesting. I never thought about it being related, I had a spastic colon for a few months, but that was a few years before the lyme diagnosis. May have been related as my lyme dr thought I probably had lyme for years. The gastroenterologist said it was caused by stess, though. He gave me a muscle relaxant for it that worked. I have never had any other digestive problems other than ulcers.

I did get sick often for a few years prior, and I think it may have been due to a weakened immune system from undiagnosed lyme. I became hypothyroid and developed thyroid eye during that time, too. Inflammation issues, too.

I am much healthier since going to the lyme dr, and following the strong antibiotic protocol, except for my terrible cholesterol labs. Now that I am trying to do the protocol recommended here, I am realizing I was not doing so great prior to starting to eat for my apoe4 status, though, actually. Even though I was not getting sick, I was always very tired and started gaining weight easily. I have much more energy now, in these last couple of months, than I have in years.

As to how I was diagnosed for lyme, my doctor tested me for lyme and all of its coinfections plus many other related things. I tested negative for lyme, though most people who have it are because you only test positive for it at a certain time after getting bit. Most chronic lyme suffereres are well past that small window of time. He diagnosed me based on the fact that I had been bitten by a tick that had time to stay in for at least a little while before I noticed it, my symptoms, the cd57 test, and the Rocky Mountain Spotted Fever positive lab, which can be a lyme coinfection.
Most people do not even remember being bit. I had been bit several years before the diagnosis. He felt my extremely low cd57 was definitive that I had lyme, combined with the symptoms and the memory of being bitten, and I felt that since the cd57 gradually went up during treatment showed me he knew what he was doing. I also had the typical herx right after starting the antibiotics.
I also stopped getting sick all the time since the treatment. I don't think I've been sick in three years. Now I am not well, based on my extremely high bad cholesterol, trigs, lpa, small particles, apob, inflammation markers, etc etc, but that is another story, the apoe4 story! Yay!
No violins...I am very grateful to know early, and to have so many chances for good health.