Anyone else test negative for Lyme but are being treated?

I've done ELISA, a western blot (supposedly by Mayo clinic) and Bartonella (Quest) tests so far and all have been negative. However, based on my symptoms and exposure my LLMD felt it likely some strain of Lyme and/or co-infection. After 6 weeks of abx treatment I have had resolution or improvement in many symptoms, with some others still going and coming. My LLMD feels this is a good indication we are on the right track and has me going 8 more weeks on current abx regimen. If my lingering symptoms do not resolve by then the plan is to start attacking Bart.

Not being able to positively identify what I have through testing is somewhat frustrating even though things are improving. Many people get bit once and test positive. I've been bitten probably 50 times since 2005 and test negative. I'm just curious how many others are in my situation?

Yes, I tested negative more than once withe Quest and Baystate labs here in Western Mass.

Clinically diagnosed by llmd.

Mud shark
I would get a copy of your tests, it’s always good to actually see and have it to look at and study. It’s also good to make sure the doctor is doing the correct test. My sister had the wrong western blot test done once, I never knew there were more than one. I think it just tested IGM instead of IGG. You can probably get onto the lab it was taken at if you’d rather get it from them instead of your doctors office.
Things to find out after you have the physical copy.
Did any bands show up on your western blot panel? Even band 41? Was the test IGM and IGG?
Did you have the hnk1 cd57 panel done? This one is more accurate, it’s usually not covered by insurance but it’s only about $150. Small price to pay to have peace of mind knowing if it’s Lyme or not.

Agree that you should get a copy of the results.

Even though it may have been negative..you may have had a lyme 'specific' band or two show up...which coupled with symptoms is enough to back up a lyme disease diagnosis.

Well I finally got a copy of my WB results today and it is about as non-specific as anything could be. All it says is negative/negative for IGG/IGM. There is no reference to any bands whatsoever. It was done by Mayo Clinic.

I'm not sure what to make of it. My LLMD is treating me based on symptoms and other factors, but it would have been nice to see more detailed results and if there is any band specific to Lyme. Maybe Mayo reports conclusion only based on CDC criteria.

Is this type of report with no band info at all normal?

My ELISA was equivocal but I tested CDC and Igenex negative on the western blot. I had bands 41, 45 and 58 on both IgG and IgM. I tested positive for Bartonella IgG but not IgM. I have all the symptoms of Lyme and they started after a tick bite six years ago. I had no idea what was wrong with me until my NP suggested Lyme this past June so I went to an LLMD. The LLMD says it's likely I have Lyme but is "hesitant" to prescribe antibiotics with the negative tests. I had a feeling if I pushed they might but I have gut issues and don't want antibiotics anyway. They offered me expensive herbs to purchase through their office (Beyond Balance) but I opted to buy my own Buhner herbs. I do think I'm having some improvement but it's subtle.

I really wish I could take another Lyme test. My titers were high for Mycoplasma, Chlamydia Pneumonia, CMV, EBV and HHV6. And then there's the Bartonella. It would be nice to know for sure if I should be treating for Lyme or just all the other stuff. Anyone have suggestions as to what Lyme test I might try next?

Post Edited (Manzanita2) : 10/31/2017 8:09:41 AM (GMT-6)

Manzanita, I'm a little surprised that your LLMD is hesitant if you have symptoms of Lyme, plus a positive test for a coinfection, plus a tick bite! I've only seen two LLMDs, but both of them diagnose based on symptoms, not on tests. These are well-respected LLMDs - one was an author on the original ILADS guidelines, one is a big name in the Lyme community who has published two books on Lyme. I didn't realize there were LLMDs who prioritized tests over symptoms.

Plus your WBs weren't exactly just naked. 41 indicates a spirochete, and 45 indicates Borellia. Source

Are you doing Buhner's core Lyme protocol or the Bart protocol? If I were you, I would do both, based on the clinical evidence.

If you really want to re-test for Lyme, you can repeat the Igenex WB. Your results will vary over time. There isn't really any better test.

biscotta said...
Mudshark, this is the problem with Lyme tests from a lot of labs. The ELISAs give a ton of false negatives, and the Western blots are evaluated based on the CDC criteria, which are questionable. The CDC completely ignores a couple of bands that are specific for Lyme. I'm not very familiar with non-Igenex WBs, but there could also be an issue with sensitivity (the ELISA seems to suffer from a sensitivity problem).

Unfortunately most doctors have very black-or-white thinking when it comes to tests. It's how they are trained, and it's the output that labs often give. Back before I got sick, I taught lab classes for pre-med students. I doubt that most doctors remember the details of how these tests work or how to interpret them if a lab isn't just handing you the answer.

So that's why it's worth it to get an Igenex WB if you are really in doubt. According to CDC criteria, I'm negative, but according to Igenex criteria, I'm positive. I was diagnosed based on symptoms.

Even the CDC says that Lyme diagnosis should be done clinically, not based on their criteria. So a clinical diagnosis by an LLMD and the fact that you are improving sounds pretty convincing to me. Is there a reason you're skeptical about the clinical diagnosis?

Since a lot of my symptoms revolve around peripheral neuropathy issues there is that lingering question if this could be something other than a TBD, and my symptoms may be coming and going on their own pattern and just coincidental with abx treatment. From what I understand I'm not the typical presentation, but I did see some good improvement or near-elimination of many symptoms. My LLMD felt there was way too much going on to be a simple neuropathy issue, something more systemic and I do agree. I'd just like to have that small sliver of doubt erased so I could get on with it. At least MY acid test tells me it a TBD - I can drink a couple IPAs again w/o getting a pounding headache! No way I could do that during the last year or so prior to taking abx. My bladder and gastro issues are flat out gone, but the neuropathy stuff lingers.

I've come to the realization its going to take time to heal since I've likely had this for years, but because of excellent health and physical shape it's taken a long time to get hold of me. I think the stress and anxiety that came from worrying about the odd symptoms I was having allowed it to gain the upper hand. I went from worrying I had ALS or MS or multiple myeloma or Parkinson's or other crap I have forgotten about to LD, which has a much brighter outlook to me.

Another very recent reason I should feel some certainty is my reaction to A-Bart. I've felt pretty strongly that Bart is playing a major role in this, but to date have only been treating Lyme. After improvement in many of my symptoms my foot pain and lower leg weirdness starting ramping back up, and worse. I called my LLMD and said hey "what can I take for Bart in the meantime?" He gave me some A-Bart and I definitely feel like I'm herxing on that.

At some point I may do an Igenex WB if things don't progress for the better, but so far I realize many things are better.

Thanks!