Lyme Disease questions

[floridafam]

I saw my Dr. today and my blood work for the Lyme Disease Titer was high but the second test was negative so he said that there is nothing to worry about.

Any experience with Lyme Disease? Should I really not worry? Why would the number be high?

Thanks.

 

[justhat]

I have no experience with it, Holly, but I am guessing that if your dr said there's nothing to worry about, he must feel pretty confident that that is in fact the case. If he were concerned about the initial high level I would think he'd order more tests or something along those lines.

 

[lsyorke]

Lyme disease cannot be diagnosed on the basis of a blood test only. If you are exhibiting signs of Lyme , then you should be treated for Lyme.

A close friend(in Canada) fought for treatment for 4 years, deteriorating neurologically over those 4 years. Canada doctors refused to treat her because her Lyme test was negative. Sadly, she finally got a positive test, but the damage is done.

 

[OctMtnWoods]

Lyme disease cannot be diagnosed on the basis of a blood test only. If you are exhibiting signs of Lyme , then you should be treated for Lyme.

A close friend(in Canada) fought for treatment for 4 years, deteriorating neurologically over those 4 years. Canada doctors refused to treat her because her Lyme test was negative. Sadly, she finally got a positive test, but the damage is done.

I can sort of understand that depending upon where she is in Canada. Many parts of Canada don't really have a tick problem like we do here. Its probably something they rarely even see up there. I know you can spend time outdoors in parts of Canada and never even see a tick on you.

Its only because of more recent (30-40 yrs) understanding here in the Northeast is it something that doctors take a bit more seriously here. And its really only in the past 15 yrs or go that dr's are more apt to provide antibiotics as a precaution.

 

[JerseyMamaBear]

I have had lymes for 25 years now. I have all sorts of joint issues, back pain and cronic migraines beacuse of it. At first they did not know what I had so they kept me in the hosp for a week then finally sent me home. It took another 2 years for docs to diagnose me. I wound up being the 1st case of documented lymes in any of my surrounding counties. PLease,if you are concerned get a second opinion.

 

[floridafam]

I really like my Dr. and trust what he says but I also wonder why the high level showed up.

I have numbness in my left arm and back and both hands and just feel blah all the time. My left eye twitches sometimes for extended periods of time.

Every MRI I've had has come back negative. I do everything I can to stay healthy.

Unfortunately, I've also had shingles but the Dr. doesn't think that the pain is a result of that. We are fairly certain it is not cardiac related, either. My LDL was a little high and I do have an appointment with a Cardiologist since my sister who is only 18 months older than me had a heart attack two weeks ago.

It's just so frustrating not to know what it is. I'm not that old and I just would like to be free of the pain and numbness.

 

[justhat]

Holly was it IGM or IGG?

 

[floridafam]

lsyorke,

What do you mean when you say it can't be diagnosed by a blood test only?

 

[floridafam]

I will look at the lab slip. I always get a copy so I have it in case I have to see another Dr. He took a lot of blood and ran many tests because of what happened to my sister and my horrid family history.

justine,

The first test was the Lyme AB screen. It was followed by the IGM Western Blot (at least that is what I gather from the lab results.)

Everything else seemed normal. My WBC was low, LDL was high and my thyroid was normal (I had my thryoid removed in 1995.

Actually, the slip looks like it was both the IGG and the IGM.

 

[anniemae]

from what I understand, it is very difficult to diagnose Lyme Disease from a blood test. There are a lot of false negatives. For some reason, the test is not very reliable.

 

[justhat]

IGM would me you actively have Lyme. IGG could mean you were exposed, had it and are under treatment, etc. It usually develops months afterwards (the IGG). So if the IGM were the high one, then I would in fact be concerned despite what the dr said, but otherwise I would trust him. I really think that if he had any reason to think it were Lyme that he'd order more tests to be safe, rather than risk anything.

 

[floridafam]

The only thing that was high was the Lyme AB Screen. It was 1.11. Then, he did an IGG Western Blot and an IGM Western Blot and everything in those columns came back negative.

 

[justhat]

The only thing that was high was the Lyme AB Screen. It was 1.11. Then, he did an IGG Western Blot and an IGM Western Blot and everything in those columns came back negative.

Then I think I'd feel pretty good about the dr's opinion, though of course it doesn't help solve your problem of pain and numbness. Joey seems to agree with your dr, that if the IGG and IGM were negative that it's not Lyme. I'm sure it's nervewracking to have these issues without any idea why, particularly with your family history, so I hope you can figure it all out soon.

 

[floridafam]

Thanks, Justine.

I'm sure I will figure it out sooner or later. It COULD be pain from having shingles. Who knows. At least I know that it doesn't seem like anything serious. That definately makes me feel better.

My family always gets stuck with the weird stuff that nobody can diagnose.

We're going to be up in your part of the country next month. We have to take Kona to Johns Hopkins because they still can't figure out why she smells like fish and if it has anything to do with her developmental delays.

I will continue to work with my Doctor to figure this out. He seems very thorough and open to new ideas despite the fact that the population here is much older.

 

[justhat]

Wow, I can't believe you're still trying to get to the bottom of that fish issue. I can't imagine how stressful not knowing must be for you. There's no better hospital than JHU though, so I know you'll be in the best of hands there. My friend is a pediatric intern at Hopkins (I went to undergrad there too) and he loves working there because every dr he works with is just a wealth of knowledge. Best of luck with all that, I hope they can figure things out for you. As lucky as you guys are to have Kona, she's a lucky little girl to have such a dedicated family.

 

[floridafam]

Congratulations! I just saw your ticker.

The worst part of all this was the Dr. called while I was in Orlando with Devin and Sonja. They were attending Apple Camp and we stayed at WDW. He left a message that some of my blood work came back abnormal and that I needed to call and schedule an appt. I had myself convinced I was dying from last night until my appt. this morning. He walks and and says it's nothing. He could have told me over the phone.

 

[JessicaR]

Find a Lyme specialist. Click on Flash Discussion and then on Seeking A Doctor.

http://www.lymenet.org/

Lyme tests can be unreliable in some people.

CDC info on Lymes
http://www.cdc.gov/ncidod/dvbid/Lyme/ld_humandisease_diagnosis.htm

Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.

My sister and my uncle both had/have Lymes and tested negative numerous times.

At most, only 70% of patients have antibodies early, and the presence of antibodies alone does not make a disease diagnosis.


I would only pursue this if you think you do have lymes disease, yet you test negative. Do you have any classic symptoms? Did your doctor treat you with antibiotics?

Hope they figure it out and you feel better!

 

[justhat]

Congratulations! I just saw your ticker.

The worst part of all this was the Dr. called while I was in Orlando with Devin and Sonja. They were attending Apple Camp and we stayed at WDW. He left a message that some of my blood work came back abnormal and that I needed to call and schedule an appt. I had myself convinced I was dying from last night until my appt. this morning. He walks and and says it's nothing. He could have told me over the phone.

Thanks! I'm sick and miserable right now so not feeling too much excitement yet, but the kids are.

OMG, I can't even imagine hearing news like that in light of what just happened with your sister. I would have wanted to know over the phone too, what a panic you must have been in, particularly while away with the kids. At least now you know it's likely nothing too serious, but still, I am sure you want to figure it all out as soon as possible.

 

[lsyorke]

lsyorke,

What do you mean when you say it can't be diagnosed by a blood test only?

The tests are limited in their accuracy because the IGM and IGG are present for various periods of time. If a blood test isn't done within those time parameters the result can be negative, when in fact the disease is present, but the testing methods are not able to detect it's presence.

In the case of my friend, she was tested well beyond when her symptoms started(even though she had a documented tick bite) and those titers had returned to normal...when she still had the disease.

This site is pretty good with explaining each test:

http://www.canlyme.com/labtests.html

I work with alot of "lyme literate" doctors who don't rely on the blood tests, but do rely on the symptoms that are presented, which is what is recommended.

My friend went through hell, and still continues to fight for treatment. The bizarre part of this is that 4 years ago she was put on IV Rocephin for an unrelated infection and all of her symptoms(neurological) went away. The doctors discounted this as "coincidence".

Get a good lyme literate doc!