The results are in!

[Erin]

However, I havent seen them for myself yet.

My doctor's office just woke me up with this.

The nurse told me that it was "indeterminate"

I asked her if there were any bands showing, and I'm guessing she doesnt know how to read the results, but she sat there going "ummmmm" for a minute and then said that she guesses there's no bands showing.

I asked her to leave a copy of that at the front desk because I'll be going up there for a copy later.

I'm not surprised that they didnt find any bands (as far as I know) but why are they saying "indeterminate"?? I thought they'd say negative or positive.

[RuthHinWV]

Hi Erin, Sounds like you got the same reading I did first time around; I had Equivocal. That means there is something there, but it's not low enough to be negative & it's not strong enough to be positive. HEY, it's not negative & that's something to hang your hat on!!!

A few years on abx & my Igenex test now reads Positive; they change like that from the abx, but no one is quite sure why. It doesn't mean you don't have Lyme or other tick borne bacteria in your body; it means you have something there that's causing a reading of "maybe", but your body isn't producing enough antibodies to create a stronger reading. Your lucky, you did produce a reading; many people don't develop antibodies therefore they can take a million tests & everyone will come out negative.

Your doctor is willing to look in to this; if it were MS, you would have had a negative, because you wouldn't have had any of the tick borne bacteria in your body.

Just a thought, Ruth

[Erin]

I'm quite confused about this...here are the results that I just picked up from my doctor's office.

This is what the IgG said.

18 kDa -
22 kDa -
**23-25 kDa -
28 kDa -
30 kDa -
**31 kDa IND
**34 kDa -
**39 kDa
**41 kDa +
45 kDa -
58 kDa -
66 kDa -
73 kDa -
**83-93 kDa -

And here's the IgM

18 kDa -
22 kDa -
**23-25 -
28 kDa -
30 kDa -
**31 kDa IND
**34 kDa IND
**39 kDa -
**41 kDa IND
45 kDa -
58 kDa -
66 kDa -
73 kDa -
**83-93 kDa -

Both tests say that they're Igenex AND CDC negative.

**********
So, what's the deal with this?

On the page for the IgM results, they have in capitol letters this sentence.

"PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE * * * THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS"

On the first page of the report, under "interpretation of antibody titers", they've circled 1:40 Indeterminate

What the heck does that mean??? I'm confused, and slightly intrigued by these results.

On my first Western Blot that the MS Clinic here did for me, the results for the IgG said that I had 41 and 23 kDa present...and that there were NO bands present on the IgM... Now, this WB is saying I've got indeterminate results for at least 3 bands on the IgM.

Should I pony up another $250 for another WB in a couple of months? I didnt talk to my doctor about the results today, the office was packed, so I just got the copy of the results. Should I go back and talk with my doctor (not an LLMD, but at least he's been trying to help)

[RuthHinWV]

I'm quite confused about this...here are the results that I just picked up from my doctor's office.

This is what the IgG said. **31 kDa IND **41 kDa +

And here's the IgM**31 kDa IND**34 kDa IND**41 kDa IND

Both tests say that they're Igenex AND CDC negative.

Should I pony up another $250 for another WB in a couple of months? I didn't talk to my doctor about the results today, the office was packed, so I just got the copy of the results. Should I go back and talk with my doctor (not an LLMD, but at least he's been trying to help)
Hi Erin, OK, I'm not an expert at this, but since I've gone through the WB twice now, I do understand it. So, on your IgG your 41 was positive, the 31 is a maybe (there's something there but not enough to be positive & a little too much to be negative. The same on your IgM; they're all maybes; not enough to read as positive but something is there.

The reason your report is considered negative is because the CDC says the lab has to have a positive reading on at least 5 different numbers/bands for the IgG & 2 bands for the IgM to be positive. You don't have that many (+) Positive readings.

Here is what Dr. Sam Donta says:
The 41 Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

31: Outer surface protein A (osp A).
34: Outer surface protein B (osp B).

I researched this to find out what "outer surface protein is:

A better understanding of how B. burgdorferi interacts with its vector might lead to new ideas for combating the Lyme disease. B. burgdorferi upregulates outer surface protein (Osp) A and B during entry into ticks, and OspA contributes to the colonization of bacterium within the vector gut. We now demonstrate that OspB also facilitates the colonization and survival of B. burgdorferi in ticks.

I'd defiantly go back to your doctor, LLMD or not, he's willing to help & is your best bet right now. As whether to spend the money a few months from now; well that depends if you can afford it or not.

Dr. Donta says about retesting: What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system. That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.

Just in case you'd like to give a copy to your doctor, I'll email you the full article of Dr. Donta's Explanation of the Western Blot Test. It might help your doctor better understand the test & the significance of the bands.

Hope this helps!! Ruth

[Erin]

So, then it's still possible that it could be Lyme instead of MS?

now I'm afraid to ask my doctor to do more testing, a bit afraid that because it's CDC and Igenex negative, that he'll think that it's impossible for it to be Lyme.

I remembered something recently. About 5yrs ago, we had a mouse infestation at the house I used to live in. (ewwww!!!) and I didnt realize right away that the nasty creatures seemed to prefer my bedroom.

Apparently the nasty buggers were in my BED (I'd wondered why my pillows were leaking stuffing)

And, we all know that mice give the Lyme to the ticks (or is it the other way around? what came first? nasty rodents? or icky parasite carrying bugs?)

I wonder if I got a few more tick bites than I thought I did. (I can remember seeing 4 ticks on me at different times, but I'm pretty sure my dog gave me 3 of them, the 4th was gotten at a Camp Fire Girls camping trip)

Now I'm probably going to have nightmares about rodents talking about this now (I have a serious phobia about those!)

I've got to figure out how to ask my regular doctor about getting tested again in a few weeks, and see if he can give me an antibiotic or two to draw out some spirochetes. I'll have to print off Dr. D's article.

I wonder if the antibiotic the doctor put me on the DAY BEFORE the blood draw for this test had any effect on it...I'd only had 2 doses before the blood draw.

I dont know now if I should go ahead with the MS drug that I'm going to start taking next week. (just got my drugs today, dont learn how to use it till next week because the training nurse is on vacation)

I know that my neuro isnt going to believe the possibility of Lyme. He was just humoring me when I told him I had gotten another WB test done...he said to send him the results (my regular doctor is doing that)

I'm still getting the weird vertigo I was getting a couple of weeks ago, not as often as I was, but it's still there. Maybe I can go back to my regular doctor about that, and ask about the WB results and what he thinks and see if he'll do another blood draw.

argh! I wish there was a Lyme knowledgable doctor (who isnt a total putz like the ID doctors that I saw a few weeks ago) in Omaha.

[Erin]

I just got a call from the lab tech at my doctor's office. Apparently my doctor's nurse didnt note in my chart that I'd been contacted already about the WB results.

So, in a few minutes, I'm betting that my doctor is going to think I'm an insane hypochondriac, because I asked the tech about the results, all those IND's and the one positive on band 41.

I told her that I'm thinking of redoing the test in a month or so.

and I told her about Dr. Donta, and Dr. Burrascano and how there's all this controversy about how to diagnose Lyme...and told her about the studies and papers that I've read that both doctors have published.

I told her that I probably sound like a hypochondriac or like I'm totally desperate for this to not be MS, but both Lyme and MS are clinically indistinguishable from each other and that I want to be absolutely sure which one this is, and everytime I have a test done for Lyme, I get more and more curious as to whether or not this is Lyme disease.

This is totally driving me nuts. Everytime I've had a test for Lyme (except when I had the ELISA, that was negative) it makes me less convinced that it's MS. (I have an open mind. I think it could be either or, or it could be both)

But, I cant get any doctor's to really believe me about it. I've gotten them to do the tests, but they just look at the "negative" at the top of the page and dont do any more reading about the actual results, and the fact that it IS showing bands of Lyme bacteria...even if they're not enough to satisfy the CDC's criteria for a positive. (it's a stupid criteria too)

I just want them to take me seriously and actually read what's being said by doctors like Donta and Burrascano.

The lab tech was going to go ask my regular doctor about getting the test repeated in a month...I'm sure he's now thinking that I'm obsessed with this being Lyme instead of MS (I'm not...I'd prefer to not have either disease...I'm sure Lyme isnt treated any easier than MS is)

I'm actually obsessed with getting someone to listen to me and my concerns, instead of talking down to me as if I'm a moron or something. I might not be a doctor, but I can read and reason, and I just want to make absolutely sure about this.

I guess I'll go eat breakfast now (wow...it's after 12 now...guess I can eat leftover pizza for "brunch") and wait for the doctor, or the nurse or the lab tech to call me back and tell me I'm nuts.

[Sonsie]

So glad you finally have the results, Erin!
Both tests say that they're Igenex AND CDC negative.
The "negative" labels need to be ignored, for diagnostic purposes, that is. Once again, diagnosis is clinical. (See CDC statement on this!) The label indicates whether your immune system is fighting the disease -- if it's not, you can't be "positive," it seems. In your case, your immune system is not fighting LD -- and because your symptoms indicate that you are chronic already, this makes sense to me. People who are already into chronic Lyme get "negative" labels.

Often once treatment starts, the label changes (assuming the immune system wakes up to the fact it needs to tackle LD). This has been true for me, and when I do get re-tested, we always start out the next appointment looking at the bands. Often the changes are pretty amusing -- not something I could grasp for several years until I got smarter about LD. The changes seem very capricious to me, but my doctor understands why they do what they do, and he explains it to me. My band readings never spur decisions about treatment. My symptons do.

The bands need to be analyzed by an LLMD -- perhaps your doctor can set up a phone consult with someone from ILADS? My understanding of this is that it is impossible for a doctor who has little experience in LD to do this. (I've heard this from LLMDs and from LD-aware non-LLMDs, and since both sides concur, I have to believe them.)

In my case, my LLMD diagnosed me clinically about 40 minutes into my first appointment with him. My test results (I was tested before I saw him) were very wierd, but since they aren't to be used for diagnosis, and since he doesn't use them for diagnosis, it didn't matter. They gave him baseline information, which he used to compare subsequent test results. He used my symptoms to determine what my initial treatment regimen should be. I heard later (but don't know how true it is) that my wierd results appealed to him, as a challenge, and that's one reason he picked me from his waiting list.

Not sure why you think redoing the tests, especially within 30 days, would be informative....

Did you IGenex tests for ehrlicia, babesia, and bartonella yet? Those results could provide an important view. If any of them are positive, guess what -- you've also got LD. These diseases are carried together (read on).
mice give the Lyme to the ticks (or is it the other way around?
Mice carry ticks -- ticks grab onto any warm-blooded mammal they can find, because that's how they survive. In the process of sucking blood, they transmit whatever infections they have to the host. Infected ticks will have several infections. :(
I dont know now if I should go ahead with the MS drug
As you know, I'm against this. It is the last thing I would let anyone do to me. I don't want any less for you.

Hope this helps.

[Erin]

Doesnt Igenex have a test kit for all the co-infections? Maybe I could order that, and have my regular doctor test for the co-infections and see what comes up?

I got another call back from the lab tech at the doctor's office. She said he would be perfectly happy to test me again (whew!) all I have to do is call and set up an appointment.

The reason I'm going to wait several weeks (at least 4) before I get tested for anything is because I just finished a course of antibiotics (omnicef) about a week and a half ago, along with a prednisone taper. I'd had a UTI and the doctor gave me the steroid to reduce inflammation in my middle ear (probably what was causing the vertigo...that I'm still getting)

I want to make sure the antibiotic (or the steroid) doesnt mess up the test. I keep reading in a lot of the stuff about the testing that you should be antibiotic free for at least 4-6 weeks before having a test done.

It's really annoying. I've already been labeled with an MS diagnosis, and now thru my own investigating (because if I dont do it, my doctors sure wont) I'm really really suspicious now that it's possible Lyme.

Now I'm starting to get some really serious migraines that are just making me not want to do a thing...and they're not responding to my migraine meds much.

hopefully my doctor will still continue to help me and not think that I'm a total nut if I keep pushing for Lyme tests.

[Buttons2]

Erin, I've been following your health saga here with interest. I also would say NO to meds for MS. Why? Cause if you get on those (steriods?) you will feel alot worse & set yourself back healthwise.

I'm not sure how many symptoms you have right now,but the vertigo,ear infection,UTI,all these could be from a bug invasion.

Your history of the mice & the ticks,plus some "indeterminate" test results sounds like a Lyme diagnosis to me!

I understand how you are going nuts from not having any positive diagnosis,but why not just get on some strong anti-biotics & see how long it takes to have a herx?

Also, I think I've mentioned before about eating carbs (cold pizza for breakfast is my FAVORITE food by the way-or used to be). Even with the right anti-biotics you are gonna have to change your diet!

I'm suggesting you come up with a game plan. Which anti-biotic to match the symptoms you have at this time. Give it a try. You'll either get worse or see improvement (or both). I realize this sounds confusing but then the entire process of healing is hit or miss isn't it?

The good news is nobody has packed you off to the loony bin yet & you actually have med. professionals willing to learn & help you! This all reminds me of my own story a few years ago! Leaving doctor offices in tears of frustration & exteme anger! Researching for hours on end,trying to get a definative answer: Is it MS or isn't it? So I understand your agony!

I'd list all the symptoms,keep a calendar everyday of each one,migraines won't react to meds if it's one of the co-infections causing them (my opinion). You gotta kill the suckers!

Wishing you some relief soon & the best of luck with all this!
Buttons

[Erin]

Erin, I've been following your health saga here with interest. I also would say NO to meds for MS. Why? Cause if you get on those (steriods?) you will feel alot worse & set yourself back healthwise.




What about the other MS drugs (copaxone) would that do any damage?

[Buttons2]

good question! I can't claim much knowledge of MS because I never got a definative answer! I have "mystery disease" HA.

Hopefully someone else will know the answer. Do you know just what that drug is supposed to do for you?

[Erin]

good question! I can't claim much knowledge of MS because I never got a definative answer! I have "mystery disease" HA.

Hopefully someone else will know the answer. Do you know just what that drug is supposed to do for you?

Copaxone is supposed to reduce the number of exacerbations that an MSer has per year...basically it slows down the progression of MS (at least that's the way I understood it to be)

I tried Googling to see if Copaxone is ever used as a treatment for Lyme, but I guess I dont have the right combination of keywords...or there isnt any research out there for using copaxone as a treatment for Lyme.

[Sonsie]

Here's a place to start learning about MS-Lyme:

http://www.betterhealthguy.com/index.php?option=com_content&task=view&id=68&Itemid=83

I'm sure other sources exist too, but I don't have any other links at the moment. I know most of what I know about this from my friends who have LD and were maltreated due to misdiagnoses of MS. They got worse over time with MS treatment. They improved over time with LD treatment.

vertigo
This is a common symptom for Lymies, along with tinnitus, Erin. I strongly suspect that you have it because of LD, not other reasons.

[RuthHinWV]

Hi Erin, While I agree with Buttons not to take the MS drugs, as I've said before, it's your body so it's going to be you to make the decision one way or the other. All I know, when the neuro wanted me to take MS drugs "just in case" & the material I received on those drugs said possible heart muscle damage & arterial restriction; NO was my response. Also, as I'm sure you know, there is no drug that will cure MS; the drugs are used only to possibly control the symptoms.

The reason you didn't find anything on using any of the MS drugs for Lyme is because they aren't. Lyme is only controlled & hopefully cured by use of antibiotics!! It takes the bacterial killing ability of abx to get rid of the little bugs running wild in your system. Just a thought!!! Ruth

I did Google it for you & found the following from the MS website:

http://www.multiplesclerosis.ms/conventional.htm

CONVENTIONAL MS TREATMENT

Immunomodulation

Conventional treatment of MS targets inflammation and MS plaques in the nervous system. It is a symptomatic treatment trying to suppress the inflammation and modify immune response. There are now four injectables available, ABCR (or CRAB).

Avonex
(Interferon Beta-1a) 30 mcg im q week. Single-use vial. Reconstitute.
Refrigerate. Check CBC, LFT q 3-4 months

Betaseron
(Interferon Beta-1b)250 mcg sq qod or Mon-Wed-Fri, Single-use vial. Reconstitute.
Store at room temperature

Copaxone
(Glatiramer Acetate) 20 mg sq qd, Pre-filled syringe
Refrigerate

Rebif
(Interferon Beta-1a) 22 or 44 mcg sq Mon-Wed-Fri, Pre-filled syringe
Refrigerate bellow 25°C. Avoid heat, light.

Side effects :

Most people who take interferons have flu-like symptoms (fever, chills, sweating, muscle aches, and tiredness) early during the course of therapy. At times side effects can be severe enough to discontinue the medication. Injection site reactions (inflammation). Liver toxicity. Blood cell count abnormalities. Spasticity.

Precautions :

Depression, Mood disorders, Thyroid problems, Blood problems, Seizures, Heart problems, Liver disease
Contraindications :

Pregnancy or women planning to become pregnant.
Efficacy :

Drugs are controversial. Especially in progressive form of MS medications do not seem to be effective. In relapsing-remitting form, efficacy ranges from 0% -40% in reducing the attacks.

[Buttons2]

Erin, I did some research on copaxone & one thing that struck me was the possible side effects are very similar to symptoms of Lyme or reaction to anti-biotics.How would you know?

I went to a site where actual people with MS rate this drug & it seemed to be about average for most. Injection site was the biggest issue,destroys the fat cells @ injection site & leaves a "dent". Plus the pain. for some it was working very well,others said they'd never try it again. I suppose this can be said for any drug right?

We can't make the decision for you but it would seem to me if there's Lyme invasion & you ignore that to go along with the MS treatment-you will get far worse. Just my thinking.

What I do think is that you are in denial you have Lyme. I'm not being critical just my observation! I don't understand all these tests & the bands,etc. But my brain tells me if you have MS & no Lyme or co-infections.....why would your test show ANYTHING but negative?

I'm about the most ignorant here about Lyme,but if you'd list your past & current symptoms I bet someone can match them up to one or more of the co-infections. THEN,you could have blood drawn for Igenex to test for those. Does this make sense?

Buttons

[Erin]

The problem with Lyme and MS is that they're both clinically indistinguishable from each other. So, if I list past and present symptoms, we can match the symptoms to both diseases.

But, here goes...my list of symptoms

Optic neuritis
numbness
low back pain
l'hermittes sign (numbness and tingling in hands and feet when I move my head forward, means there's damage to my spine in the area of C-4)

tingling, burning, hot and cold sensations in feet
sensation that feels like I'm wearing boots full of thumbtacks
UTI's
vertigo (feels like a spinning sensation)
weakness
neurogenic pain
2 lesions on my spine at C-4 and T-12
sore throat on one side of throat (read that one in a list of Lyme symptoms) I seem to get tonsilitis a lot. My optic neuritis seems to have been triggered by a sore throat last year about this time.
optic nerve pain when I'm around fluorescent lights too much
insomnia
sleeping too much
emotions that go back and forth (sometimes I'll cry over stuff that I never would have before...like a commercial)
I'm easily ticked off now too. I can get really ticked off by little things.
problems with concentration


I cant think of much more right now (that may have something to do with the problems with concentration)

[Sonsie]

Erin, wish you were feeling better today! Your list helps us see how much of a conundrum LD is. As you know, I am strongly in the "LD, not MS" camp in your case. The more I learn about what's going on with you, the more strongly I believe this.

optic nerve pain when I'm around fluorescent lights too much
Just to play the devil's advocate, your symptoms can also be attributed to something else bsides MS or LD. This pain also can be caused by other, pretty benign things, such as dry eyes and early cataracts. This is why we need LLMDs to sort through what's going on with us.

Hang in there!

[Matthew's Mom]

Hello Erin and all,
I'm a regular poster at the MS board, but have been visiting here since my brother was dxed with Lyme recently, all his tests positive. He wasn't feeling well and the day of his doctor appt for what he thought might be strep, while taking a shower to get ready for his appt. he saw the "rash" on his ankle, where he had wiped off a small black spot weeks earlier.

The dr. put him on an antiobiotic for threee weeks and he is doing well.

Anyways Erin knows me from the MS board. She has been going though hell trying to find out what is wrong-regarding a diagnosis.

With my multiple sclerosis it took years to get dxed, I had symptoms for many years and my last my next to last 4 brain mri's showed increase in lesions etc. Last one no increase in lesions but do have black holes.

Erin I wish I knew what advice to give you to help to see what is going on.

You must be so confused/upset not knowing if its lyme or MS:( I hope it is neither.

I know your ms meds are being mailed to you or you have recieved them. I agree with others here to hold off on the mS meds until you recieve a definite diagnosis.

I think the best thing would be to see your neurologist, write down a list of questions, bring in your test results, and bring another person with you as a witness to what the neuro feels is going on.

Also wondering if there is a Lyme Disease foundation that you could contact with questions and advice on where to go from here?

Wouldn't hurt to post your lyme results on the MS board also, as others have been tested for it and might have ideas.

Hugs,
Pam

[Erin]

Well, I have had a diagnosis (neuro says it's MS) but apparently I'm in serious denial now. The fact that the Igenex WB that I had done actually showed a hint of bacteria on it is really what's making me doubt the whole MS diagnosis.

Even tho I have my drugs (not trained to use them yet, the training nurse is on vacation) I'm just not quite ready to start poking myself with the needles. I think I'll be telling the MS drug nurse when she calls me next week that I'm holding off on starting the drugs for a few more weeks and that I'll call her when I'm ready to start poking myself. (hopefully I wont have to call her back)

At least my regular doctor is willing to help me investigate Lyme disease a bit more. Altho, I'm wondering if he's just half a step away from telling me I'm nuts.

Oh yeah...I forgot to mention two (or three) other symptoms. First, an annoying bit of forgetfulness that has been bugging me for awhile. (cant remember what I'm going to say sometimes)

Then the migraines that keep showing up a couple of times every few weeks that dont seem to respond to the migraine meds...and then there's the painful knees. When I walk downstairs, my knees are making crunching sounds, and they hurt (not all the time for some reason) Sometimes they hurt so bad that I can barely walk down the stairs...and then I guess the pain in my big toes goes along with the knee pain. My big toes actually hurt more than my knees do. They've been like that for about 12yrs or so, but just recently (in the last 6 months) started to REALLY hurt.

[Matthew's Mom]

Erin,
I know you are dxed with MS, meant to say if there's a chance it could be lyme instead the doctor really has to make sure which it is to treat properly.

Your posts have really made me think. Way back when I was in my early 20's, I'm 47 now, I remember going to see my family dr. and showed him a bullseye rash on my left buttock area. He prescribed an anti fungal type ointment and the rash did go away after a week or two.

But it makes me wonder now why I went to the dr in the first place, it had to be that I wasn't feeling well at all, not just the rash because I had no insurance and hardly ever went to the doctors.

But in the couple years following the rash developed irregular heartbeats, and many of my MS symptoms began.

Now I'm thinking if its possible I could have Lyme also. Back then a doctor would not recongnise the rash as related to lyme. The doctor passed away some years back and I never went to get my records from his office, now I wish I had so I could read my origional reason for seeing him and the follow up appts and testings.

I used to go to Indian Lake up in the Adirondacks fishing and would sit on the ground by the Lake. Very possible I was bit by a tick.

I know in my MS workup I had one bloodtest for lyme and it was negative.

But reading here see that it can come up negative and then show positive.

So I was wondering what is the best test to have if I could have had lyme for over 25 years?

Pam

[Erin]

Erin,
I know you are dxed with MS, meant to say if there's a chance it could be lyme instead the doctor really has to make sure which it is to treat properly.

Your posts have really made me think. Way back when I was in my early 20's, I'm 47 now, I remember going to see my family dr. and showed him a bullseye rash on my left buttock area. He prescribed an anti fungal type ointment and the rash did go away after a week or two.

But it makes me wonder now why I went to the dr in the first place, it had to be that I wasn't feeling well at all, not just the rash because I had no insurance and hardly ever went to the doctors.

But in the couple years following the rash developed irregular heartbeats, and many of my MS symptoms began.

Now I'm thinking if its possible I could have Lyme also. Back then a doctor would not recongnise the rash as related to lyme. The doctor passed away some years back and I never went to get my records from his office, now I wish I had so I could read my origional reason for seeing him and the follow up appts and testings.

I used to go to Indian Lake up in the Adirondacks fishing and would sit on the ground by the Lake. Very possible I was bit by a tick.

I know in my MS workup I had one bloodtest for lyme and it was negative.

But reading here see that it can come up negative and then show positive.

So I was wondering what is the best test to have if I could have had lyme for over 25 years?

Pam

If you can get a doctor to test you with a Western Blot (get a test kit from Igenex) that might be a good test to use. The ELISA or EIA tests are total crap, but that's the one that doctor's are supposed to use first, and they usually only WB you if the ELISA comes back positive. The WB is a better test (not much better, from what I've read, all the tests for Lyme have their own problems with finding anything)

My regular doctor gave me the ELISA test, didnt find anything, but when I went to the MS clinic in June, the nurse practitioner there humored me and did a WB for me, it showed something, but they only looked at the Negative result and not at the actual results. But it made me curious enough that I had the Igenex WB done...and now I'm curious enough to test for the co-infections...if I can get one of those to test positive, then maybe they might change my diagnosis to Lyme.

[Sonsie]

what is the best test to have if I could have had lyme for over 25 years?
Pam, testing isn't useful when you have chronic Lyme -- reasons are due to the way the spirochete behaves. It is not in the blood stream for more than a short time post-bite. Here are some URLs re: testing, to help you learn about this:

http://www.anapsid.org/lyme/lymeseroneg.html (false negative info)
http://www.wildernetwork.org/accurate_test.html (test accuracy)
http://www.johndrullelymefund.org/Pitfalls%20Lab%20Testing.htm (testing pitfalls)

Diagnosis is clinical -- based on symptoms -- per all LLMDs and the CDC.

[tmptmp]

Testing Isn't Useful

Based on my own experience with long-term chronic neurological lyme I have to disagree.

What was going on with me was finally diagnosed in 1988 with a Lyme titer blood test. I tested positive for Lyme at every lab my blood was sent to. Prior to that, and because I was so ill, I had been tested for everything under the sun including AIDs and MS.

I had been exposed to Lyme at least 20 years earlier.

I was successfully treated with IV cefotoxim (sp?)

[Erin]

Testing Isn't Useful

Based on my own experience with long-term chronic neurological lyme I have to disagree.

What was going on with me was finally diagnosed in 1988 with a Lyme titer blood test. I tested positive for Lyme at every lab my blood was sent to. Prior to that, and because I was so ill, I had been tested for everything under the sun including AIDs and MS.

I had been exposed to Lyme at least 20 years earlier.

I was successfully treated with IV cefotoxim (sp?)

Isnt a Lyme titer the same thing as the ELISA test, which is well known for being unreliable?

[tmptmp]

I have no idea but I do know that if a number of
different labs get the same results the probability
is that the results are accurate.

Erin Wrote:
....Isn't a Lyme titer the same thing as the ELISA test,
....which is well known for being unreliable?

[Matthew's Mom]

Thanks to all for info. Will bring this up to my neuro at next appt.

Pam

[6t5frlane]

I would go on Doxy for 10 days get off for 5 days and re-test. Sometimes the antibiotics will trigger a positive response since the little buggers are dying off....

[tmptmp]

My understanding is that antibiotics can mask a positive.
In any case its best of be antibiotic free. I would check
with lab or doctor to see exactly how many days away from
them is best.

. . .Sometimes the antibiotics
will trigger a positive response since the little buggers
are dying off....