I was bitten by a tick a month ago and recently received my test results from Igenex. I tested the tick and the tick was negative for lyme. However, the following is what I received from my blood results:
IgM Western Blot -
IgG Western Blot-
IFA, B Burgdorferi G/M/A - 80
Is it possible to know from the blood results if I've been infected for a long time and just not have known? Do I definitely have lyme's? Should I see a Lyme Specialist or is a general internal doctor ok?
Thank you for any advice or insight anyone may have!
That it is a positive result. If you have access to a LLMD (Lyme Literate Medical Doctor), then definitely go to one. Most non LLMDs will give you three weeks of doxycycline for a tick bite and positive Western Blot.
However, there are estimates that the treatment failure rate is as high as 25% with only three weeks of antibiotics. It is a whole lot harder to treat it later if you're one of those cases. Having been terribly sick with Lyme, I am paranoid and would want a couple months worth.
If it is going to take awhile to get in to see an LLMD, you could get the three weeks worth from the doctor who authorized the IgeneX test for you. If that doctor is open to treating you longer, then you're set. If not, then that gives you three weeks to get in to see an LLMD who will treat you longer.
Some people do start converting over to IgG antibodies at about 4 weeks.not everyone does, though.
Where are you located? You can find a local support group and ask for recommendations to doctors willing to prescribe more than three weeks of abx. You can also contact ILADS.org or your state Lyme Disease association.
One more thought on the tick...I have read that a tick can test negative for Lyme after it has transmitted the bacteria to the animal or person it bit. A negative tick does not mean that it didn't give you Lyme. For this reason, many LLMDs don't bother testing ticks. They will usually prescribe antibiotics for a tick bite anyway as they know that many patients don't get a bulls eye rash as a warning sign.
I'm not medically trained, but from what I read on your test results, I would *definitely* see a Lyme specialist.
The numbered lines (called 'bands') may or may not indicate Lyme, but you've got the prettiest set of Lyme-specific bands I think I've ever seen here:
"IgM" measures your immune system's reaction to an infection shortly after you have been infected; it trails off after a while, and your immune system starts making "IgG" antibodies. They are both valid, and just give the doc some insight into how long you've been infected, but it's not a precise marker, just a general one ... which is fine.
Here is what my handy list (taken from truthaboutlymedisease website) says about your bands (whether IgG or IgM doesn't matter):
31, 34 and 39: these bands are specific to Lyme, meaning only Lyme will show positive on these bands
41: this band could be Lyme, or could be another spiral-shaped bacterium, so this is a 'maybe'
58: this band may be the remnants of Lyme, so it's also a 'maybe'
There is some controversy about how to weigh the importance of bands, with some docs requiring that there be not just an 'IND' marker (meaning 'indeterminate'] but a specific minimum number of '+' signs on a band for it to be a slamdunk indicator of Lyme.
These high standards were developed by the CDC to be sure that for tracking the spread of Lyme across the country, ONLY truly surely absolutely clear cases of Lyme would be counted, to keep the scientific data clean. Unfortunately, those standards have been adopted by many docs as a minimum to give a Lyme diagnosis, and what one of those docs might say, I don't know.
However, in your situation, I would take these results and run (not walk) to a Lyme specialist for a work up. You could also have other diseases the ticks carry, and those need separate testing. A good Lyme doc will know from your symptoms what to test for.
You ask if you could have been infected for along time and not known it -- yes, absolutely. I think I had a low level case of Lyme for a long time and then got re-infected and suddenly was very ill ... never saw a tick, never had a rash, but was diagnosed (by lab test and by my LLMD) with Lyme and babesiosis (similar to malaria). My kid, who was never very ill, was also diagnosed with those as well, and admitted after treatment to having felt kind of rundown for a long time and not realizing it.
I'm not conversant with the IFA test, so will let someone else speak to that.
But absolutely I would find a Lyme specialist and not a regular doc, because regular docs just aren't trained to understand Lyme or treat it properly. If you need help finding an LLMD [patient slang for a Lyme-literate MD, meaning a doc who thinks progressive thoughts about Lyme], let us know.
As bad as it is to get a positive Lyme test, it's infinitely worse to have Lyme and get a negative test, or a positive test that an ignorant doc reads as negative. So this is (believe it or not) good news, because a proper diagnosis is the first step to getting well.
The IFA is an alternative test to the ELISA. Both are screening tests run prior to a Western Blot, according to the CDC.
I had the IFA done at a military lab and it was a false negative for me. When I had it done again at IgeneX, they said it was a 40, the lowest cutoff for "EQUIVOCAL." I believe an 80 is the low cutoff for "POSITIVE."
Essentially, you are fully CDC positive on your Lyme antibody testing. Even the CDC and IDSA would say you need treatment given a tick bite a month ago.
Thank you for the reply. Symptom-wise, I have always been low energy, but nothing that seemed out of the ordinary until maybe two weeks ago when I felt almost drunk with tiredness. However, it would come and go. I have had strange speech or memory issues for the past 6 months, but I also thought that was just old age. I've had very bad stomach cramps that last about 2 days from drinking even water. . . this has happened 6 times in the past 2 years. My GI doctor found nothing wrong with my stomach and intestines. . .
I find it hard to believe that I may have had lyme disease for a long time and not known it?! I'm not so familiar with symptoms, but perhaps the stomach cramping and memory is a result. I'm not sure...
When I first got really sick, I had the big time stomach problems, pains and diarrhea constantly. GI had no answers. Your other symptoms match also. Since my mind is currently fogy with memory issues, all I can think of is a CD-57 which shows activity of the illness. Others may know more.
You ask, "Does anyone know if there is another test to see definitively on whether or not this is a new infection or an old one?"
No, I don't think there is, and it really doesn't matter, from what I read. I think I had a low level Lyme infection for a while and then when I got suddenly very ill, I think it was a new bite ... but never saw any tick or rash on me. That's just part of Lyme's sneakiness.
So it is what it is at this point. Gotta keep moving forward.
It is very possible you had a low grade case of Lyme and your immune system was holding it in check, with occasional symptoms coming and going. It flared up on me in relapse/remission style for nearly 5 years before chronic symptoms start.
Your test results will get you initial treatment from an in network doc. But to ensure that you get cured, you'll need to see an LLMD. BCBS is one of the insurance companies that is well known for being Lyme unfriendly. You can call and ask if they will pay for more than 1 or 2 months of antibiotics for Lyme if a doctor prescribes it and see what they say. Some companies out right refuse. Others won't refuse, but then they harass doctors who prescribe more than that to make sure they don't do it again.
There are a handful of LLMDs from the Peninsula to the City, Marin, and Sonoma. For a comprehensive and current list, contact lymedisease.org.
Sorry. I can't answer that question because I don't know. One that I know of that has paid for long term treatment is the one for military families and retirees. (That probably isn't an option for you. You would need to marry someone with coverage or go into the military yourself to get it.) Ironically, military medicine follows the CDC testing protocol and IDSA guidelines. I have not heard good stories about being treated successfully by military doctors. A military hospital was unable to diagnose me.
The fact that you are in CA is a very good thing for you. Doctors are free to treat Lyme long term without sanction by the medical board, unlike most other states. However, most who do, do not take insurance because insurance companies are a nightmare to deal with.
Many people who end up at an LLMD, pay for it themselves, and then apply for reimbursement at the out of network rate. Every insurance company does this differently, and at different reimbursement rates.
I am blessed. My doc submitted a referral request for me, and my insurance approved it, because I convinced them that neuroborreliosis is rare in California and doctors here just don't know how to diagnose it, let alone treat it. I got my referral. Now, I pay for my visits, and insurance reimburses me what they would have paid for an in-network doctor. I pay the difference.
The huge difference is that medications and procedures, including my shots, are covered the same as if they were ordered by an in network doc. Without the referral, I would be paying all of it. The biggest cost of my treatment isn't the every-six-weeks office visit, it's the meds.
Here is the other big deal about being in California... There was a precedent set a couple years ago by a woman with late stage Lyme whose insurance wouldn't pay for it. She went to the state board that mediates disputes between patients and insurers. The board ruled in her favor, that her insurance company had to cover her long term abx. Also, I have read that the CA forest ranger featured in "Under Our Skin" had to sue his insurance company to get them to pay for his treatment. He won.
These precedents will help get you coverage, but you still may have to advocate for yourself. And some companies will be much worse than others. You might want to call your other choices to ask about their policies on out of network care and Lyme disease coverage.
I had to learn the hard way that how you ask questions is important. When I asked if my shots were covered, insurance said yes. But then they declined to pay. It took over an hour on the phone with them to figure out that the shots were covered only when prescribed by an in network doctor. They were not covered at all by my out of network LLMD. Once I got the referral to the LLMD approved, the shots were covered at the same level as as in network doc.
The folks at lymedisease.org can probably give you some tips and insights into insurance coverage in CA.
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