Diagnosed with lymes but not given antibiotics?

[rothda]

My son was just diagnosed with lymes - they said he had it 6 weeks ago but is fine now and no longer has it.  They are not prescribing antibiotics, but everything I read says he should be put on them.  What are your thoughts?

[Ricobord]

I tested false negative on the AB screening test for Lyme.  I suspect your doc was testing for Epstein Barr to see if your son currently has Mono.  My early Lyme symptoms looked a lot and felt a lot like a bad case of Mono, so it's not surprising he ran those tests.  Lots of people who have Lyme even test positive for Mono because Lyme can suppress the immune system, allowing dormant viruses to flare up, making the patient that much more miserable.

You need to get your son to a LLMD asap.  The upper midwestern states are very unfriendly to anything Lyme that goes outside the narrow little box drawn by the IDSA and CDC. Do what it takes to get him to a doc that will test him at IGeneX.  If he does have Lyme, he'll just get sicker and harder (and more costly) to treat.  Go out of state if necessary.

[JackieCalifornia]

That seems like a generic name for the test:  
"Lyme antibody screening test, interpretation:  negative."

Not all tests and labs are created equal, and this is a test that appears to rely on the immune system's reaction to Lyme bacteria.  The test concludes that there are no antibodies, therefore there are no Lyme bacteria.

It's a reasonable idea, but it leaves out the fact that Lyme bacteria suppress the immune system, so it may not produce detectable levels of antibodies against Lyme.  Result:  negative test, and if the test is wrong, it's a 'false negative'.

There is another test, called a PCR test, that looks for tiny bits of Lyme bacteria in the blood:  this is direct test, rather than the indirect antibody test.  Most docs think the antibody test is fine, but more progressive thinkers in the Lyme community would use a PCR test.  

If you are not able to find an ILADS-type doc nearby, then you might try this (tho going to a Lyme specialist is my first recommendation):  a well known lab that provides a PCR test for Lyme is IGeneX labs in California.  You can search their website to get more information, and if you call them, they will send you a test kit to take to a doc to have the blood drawn, then you mail it back to the lab for analysis.  

Your regular doc might not play ball, because non-Lyme docs think the current basic antibody tests are okay, but you might get a sympathetic doc who is willing to draw the blood for you (maybe a local urgent care type place).  Then the test results come back, and you've got some data to work with to go find a Lyme specialist and move ahead.

It is possible to have other tickborne diseases and not have Lyme itself, but Lyme is big driver here -- it's spread like wildfire in the last few decades, but so-called mainstream medicine hasn't caught up to that yet.

If it were my kid, that's what I'd do.  Lyme will not go away by itself.  The Lyme bacteria are in the same family as syphilis, and that's not a disease to ignore.

Hope that helps.  Let us know what you do and how it goes, okay?  Best wishes --

[cave76]

Lyme Ab Screen Interpretation: Initial evidence of no antibodies to B. burgdorferi.
(or not enough to make it an equivocal or positive.)

So that means it wouldn't be sent on for a Western Blot test.

My comments:

It seems that your test was sent to a lab that does NOT test for Lyme the way that all qualified Lyme specialist do. Or the way that most of the members here agree about.

The ONLY lab available now for the best testing is Igenex. Do you mind telling us the name of the lab that did the testing? Quest? LabCorp? Other?

Your test as probably either an ELISA (EIA) or IFA. See if you find those on your test results. lf it's the ELISA (EIA) ---- it has a very high percentage of false reports. Maybe as high as 50%

Which means that the test done isn't worth the paper it was printed on.
Sorry. So you still don't know if he has Lyme or not--------I certainly hope he doesn't.

[mojogal]

The most common Lyme test in any mainstream lab is the western blot. I have not heard of the other test mentioned.

The state of Va passed a law that if your blood tests come out negative for Lyme, the doctor must tell you that you could still have Lyme. There are many false negative tests. They are trying to pass this in other states.

[rothda]

Just got access to his test results.  The only Lyme test is this one LYME ABY SCREEN INTERP Negative  Any comments on this?

[mojogal]

Ditto what Jackie said.

[JackieCalifornia]

Not to rain on the parade ... but MDs who are not tuned in to Lyme may not think to test for Lyme, but will have no problem running a test for Epstein Barr virus (EBV).  The symptoms of EBV can be similar to Lyme, and so the doc tests for the thing s/he is comfortable checking for.  

Given that you're in Minnesota (definitely tick country), and that this is prime season (after summer) for feeling lousy if you've picked up a dose of Lyme, and that the doc didn't really test for Lyme, and that your son is feeling lousy ... well, I would find a Lyme specialist for a second opinion.  

Take the results from the EBV test, just for completeness, and see a Lyme doc as soon as you can get an appointment.

I'm not trying to be alarmist, and it's what I would do.  When I was very ill and diagnosed with Lyme, I dragged my protesting teen in to be tested too, since we had been all the same leafy-grassy places, and whaddaya know, the kid had Lyme and babesiosis just like I did.  Kids' immune systems can be very strong, and so they don't always have or identify the fatigue that can come from Lyme.  After treatment, my kid came to me sheepishly and said 'Gee I didn't realize how tired I was all the time till after I took the medicine' -- and kids can be that way.  Seeming just a little tired and listless, easy to mistake for just being a busy kid.

In your situation, I would find a Lyme specialist without delay.  Don't panic, but don't wait for things to get worse.  It's worth the hassle and the money to get the kid tested.  Trust me on this one.

If you google search for  -- minnesota lyme -- you will find lots of links to help you find a Lyme doc.  Go for it.  Let us know how it goes, okay?  


Thanks everyone - I just spoke to his doctors nurse and she said he actually DID NOT have Lymes ever!  Apparently she gave us the wrong information yesterday??!!  She gave me results from the following tests - ebvigg (positive), ebvigm (negative), ebna (positive).  From what I can tell none of these has anything to do with Lymes.  They indicate that he had Mono at one time.  I will be asking for a copy of all the test as now I don't trust them at all!  We are in Minnesota just outside of Minneapolis - he is 14.  Thanks guys!

[cave76]

Whew! That's a relief that he doesn't have Lyme. But the fact that you were given incorrect information--------- unforgivable!

Many of us do show very high EBV (Epstein-Barr Virus) along with positive Lyme disease. But let's hope that your son 'just' had mono.

Since you live in a state where the surveillance for Lyme disease is spotty at best it wouldn't be wasted time for you and your son to keep an eye out for any signs of ticks. Since he's 14 I'd bet that he would be in tick environments a lot----- creeks? parks? climbing trees? sports on grass fields? etc. All the things that a 14 yr old boy will do.

Wintertime in Minn. is probably not the best time for ticks but come spring---- that's when they start appearing. So have him do tick checks often, wash his outdoor clothes in VERY hot water and dry in HIGH heat.

Any pets? They can bring ticks in with them.

I don't mean to frighten you or your son---- but it's not often we have a chance to try to help some NOT get Lyme rather than deal with the actual disease, I hope you'll read this:

http://mnlyme.com/resources/prevention

------ print out their brochures, read their articles. It's forewarned is forearmed and I hope your son or you never EVER get this horrible disease.

Good luck.

[rothda]

Thanks everyone - I just spoke to his doctors nurse and she said he actually DID NOT have Lymes ever!  Apparently she gave us the wrong information yesterday??!!  She gave me results from the following tests - ebvigg (positive), ebvigm (negative), ebna (positive).  From what I can tell none of these has anything to do with Lymes.  They indicate that he had Mono at one time.  I will be asking for a copy of all the test as now I don't trust them at all!  We are in Minnesota just outside of Minneapolis - he is 14.  Thanks guys!

[cave76]

A first step towards finding a GOOD llmd is to contact ILADS for they're list of 3 doctors who have been ILADS trained.

However, 'just' being ILADS trained doesn't always mean that the doctor will treat via long term antibiotics. Some of them go back to their practice and might continue to suggest herbs or supplements to ''cure'' Lyme!

So if you do get that list, please PM me and I'll vet them for you. Why do I think I can vet them? Because I've been doing that for more than a decade and find some pretty astounding things about so-called ILADS trained doctors.

One in particular, but certainly not the only one, has many different ways to treat Lyme disease.

Here are just a few:

"20 minute writing exercise to overcome past trauma"

KMT technology----the  use of " micro-current, infrared and laser technology, color therapy and energy psychology to achieve microbial inhibition, lymph drainage, detoxification and emotional balancing."

"Decreasing the pathogen count
Treatment of Lyme with ozonated plant oils (rizols). Rizols have  strong and specific anti-microbial properties, no known adverse long
term effects, are relatively inexpensive and are pleasant to take. They have been used successfully since 1905"

"auto-urine therapy" (Yep, that  means drinking your own urine.)

So, beware of ILADS doctors. Most of them WILL, if asked nicely, treat using long term antibiotics. But it's up to the patient to guide them in that direction.

[mojogal]

I agree, he does still have Lyme and he needs to be on long term antibiotics. The longer it goes untreated, the worst the symptoms can get.

To find a LLMD (Lyme literate Dr) you can email ILADS.org and ask them for one near you or simply google your city and Lyme doctor.

Lyme Disease can be hard to treat and it usually comes with co-infections which an LLMD would be able to look into.

Let us know what other questions you have.

[cave76]

I'm sorry to hear that your son has been diagnosed with Lyme and even more sorry to hear that he wasn't treated with antibiotics!!!! That's almost medical negligence!

Then to hear that whoever did the test doesn't realize that the tests for Lyme can show positive once and negative the next time ----- well that's also almost medical negligence.

Do you have a copy of the test results? If not, please call your doctors office and have one mailed to you. (It's your legal right!)

But the important thing is to get him in to see a qualified Lyme specialist!
That's not always easy, depending on where you live. And because so many doctors will say 'they're qualified' when they aren't by the standards of those of us who have Lyme or had Lyme.

Do you mind telling us where you live (city and state)? If you prefer not to post that on a public board, please private message me.

We'll try our best to help your son but none of us are doctors. But we can try to point you in the right direction for help.