Western Blot results Help

[greys43]

I have been very sick for some time and finally in July 2013 was tested with the western blot test and came back positive they said one line. Didn't understand and Had test done in Nov and now have what I can see 6 re-active. here is the test result copy from my patient portal.
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot LYME DISEASE AB(IGG),BLOT NEGATIVE (NEGATIVE) no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 18 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 23 KD (IGG) BAND REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 28 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 30 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 39 KD (IGG) BAND REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 41 KD (IGG) BAND REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 45 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 58 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 66 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 93 KD (IGG) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot LYME DISEASE AB(IGM),BLOT NEGATIVE (NEGATIVE) no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 23 KD (IGM) BAND REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 39 KD (IGM) BAND NON-REACTIVE () no change from previous Nov 15, 2013
Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot 41 KD (IGM) BAND NON-REACTIVE () no change from previous Nov 15, 2013
TEST IN QUESTION- MISC QUESTION () Nov 13, 201

[Ricobord]

According to the strict CDC interpretation, both parts of your WB are negative.  But their interpretation is ridiculous for so many reasons.  To ignore Lyme specific antibodies when Lyme symptoms are present defies all logic to me.

The other thing is that all IgG antibodies were once IgM antibodies.  If those IgG bands had all showed up on the IgM, then your IgM would have been positive.  Band 23 is one of the most prominent Lyme specific bands there is and is a frequent target of study in the world of research.  

But because of the CDC, the vast majority of doctors don't know anything about the bands. They were taught to blindly follow the result.  That's why you need a LLMD, a doc who understands Lyme and the serious flaws in the testing that so often produces a false negative result.

I think IGeneX would have called that IgG result a positive because of bands 23 and 39, combined with 41.

[greys43]

To me both say Positive and Dr Quack said I'm cured after 10 days of medication. I have my 3 names not to close but emailing to set up appointment . Thanks

Ordered Date: 07/25/2013
Assessments:
Lab: LYME AB SCREEN
Name Value Reference Range
LYME AB SCREEN 1.17 index
Result: Positive
Received Date: 08/05/2013
1) Ordered Date: 07/25/2013
Assessments:
Lab: Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot
Name Value Reference Range
LYME DISEASE AB (IGG) WB NEGATIVE NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND NON-REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
LYME DISEASE AB (IGM) WB NEGATIVE NEGATIVE
23 KD (IGM) BAND REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE
Result: Abnormal

2) Ordered Date: 11/11/2013
Assessments: INSECT BITE NEC
Lab: Borrelia burgdorferi Ab(Lyme)(IgG,IgM), Western Blot
Name Value Reference Range
LYME DISEASE AB(IGG),BLOT NEGATIVE NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND REACTIVE
41 KD (IGG) BAND REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
LYME DISEASE AB(IGM),BLOT NEGATIVE NEGATIVE
23 KD (IGM) BAND REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE

[greys43]

Contact me saw that quack LOL still the same he said I am cured. Because I only have 4 lines not enough. LOL Still waiting for the 3 names going to send new request. Just thought I would let you know.

[Ricobord]

One more suggestion... contact a local Lyme support group or state Lyme Disease Association.  They can tell you who is good, who takes insurance, etc.  

Sometimes you can get diagnosed from a sympathetic local doctor who takes insurance and you can start treatment.  But then for long term treatment, you might need to go out of network to a doctor who just treats tick borne disease.  

I got a fairly long list of docs from my local Lyme support group, and a quick phone call gave me the name of who the group thought was "the best."  ILADS will only give you 3 names. It would be inappropriate for them to make recommendations, so they don't.

You can start asking friends and family, too, for names of people who've had late stage Lyme. I got the same doctor's name from 2 other people I learned of through a friend.  

There are a number of great Lyme treating physicians in the NorthEast, so you should have no trouble finding one.  Getting there is a different story, though.  You'll need someone to take you, someone who can also help you prepare the paperwork in advance, and then be with you in the consultation.

I encourage you to find a doc ASAP.  The best ones have waiting lists and it can take weeks to get in.

[greys43]

It was so had to pick the best answer. They all are great and all has helped me. Again Thanks All my new friends

[greys43]

Thank you I finally was able to send in request. Again Man was I lost and I know how to do these things. Thank so much

[JackieCalifornia]

And here's another link from the ILADS page:

           ilads  [dot  ]   org / ilads_media / physician-referral /

I will also send it to you in a private message through this system, if that is easier to read.  You will see a "(1)" next to one of the 'buttons' to click on in the blue bar near the top of this page.  Click on the button and it should take you to a place to click to get the message.  

It's way too complicated for anyone with Lyme brain -- I'm having trouble with it, and I don't have have Lyme brain anymore!  

Ask a friend to help if it's still a problem, okay?  If not that, then let us know you're still having problems and we'll figure something else out.  Hang in there!

[JackieCalifornia]

I understand that you can also just email to


      contact   [at]    ILADS     [dot]     org


and tell them where you are located (and near what big city, if you live in a not-big city) and they will send you names of ILADS docs.  If you still have problems with getting names, let us know and we'll figure something else out, okay?

[cave76]

Addressing your concerns about how many different 'things' that have gone 'wrong' in the past: It's possible for multiple health conditions to occur at the same time in a person, of course. And I can't say that they ALL are related to Lyme or not-------- probably not ALL but perhaps MANY.

Looking at it from a logical and critical thinking standpoint ----- ( I'm not a doctor!)  it makes more sense to think that many of your symptoms have a common starting point----- tick borne infections.

I know, that's hard to conceive of but so many people have  had multiple health problems resolve just by taking antibiotics----- which just  has to mean a bacterial problem not multiple health issues that all of a sudden have decided to descend upon them.

Not that long term antibiotics are always a walk in the park. And symptom relief doesn't usually happen quickly. There's only one way to find out---- antibiotics and a GOOD Lyme specialist (which you are trying to find, as soon as we get the email problem to ILADS solved.)

[cave76]

On my browser (Chrome)  Contact Us is at the very top of the page on the right hand side JUST ABOVE the bright orange DONATE TODAY.

I did try the link that you, mojo, suggested and even though it looked like a link and was clickable it didn't take me anywhere.

Its always confusing when different browsers work in different ways. Trying to give precise directions is difficult.  

I hope grey will try them both. (grey---- I just sent a PM to you also.

[mojogal]

You email them where it says contact us at the bottom of their home page.

[greys43]

I I have tried a few times and can't seem to find were to request 3 names from  ILADS dot org. Any clue. I am going to see this Dr even if I can start antibiotics it will help till I can find a   ILADS Dr. Just can't find were to ask them on there site. I know other Dr has list so many different things wrong. But I really hate to say I think mainly it is Lymes. Because this year alone I found out I my bladder backs into my kidney (or the other way lol) lots happen in 2013 have a kink in kidney or bladder line. Can't tell when I need to pee till I NEED to run. last year was bad also found out have GERD Barrets sm. Too many to fast for me Oh and was  LOST didn't even know were I should say till I meet you guys. And I do read all

[cave76]

If that doctor is an ID doctor AND adheres to the IDSA guidelines, as he probably will, then you will receive sub-standard treatment (too small a dose and for too short a time) and then will will tell you you're cured and shoo you out the door.

If that doctor is an ID doctor he has probably tested you with sub-standard blood tests (for Lyme).

However, you were lucky and DID show positive so........ maybe at least he'll start treating you for a sub-standard amount of time.

Your complicated medical history, though, complicates everything. I truly wish you could find an ILADS doctor who will take all those other conditions into account when treating you.

You say your husband can and will drive you. When I was first sick and could barely sit up, I had to lay down in the back of our van on a mattress put there for me for any trip over a couple of miles.

Now that most cars have seats that will recline---- can that help your back pain? Or perhaps even laying down on the back seats?

[greys43]

My friend travels to the Cape in a day witch is a 2 hour drive one way. I am unable to travel due to so much pain. But if all else fail I will.  If I drive I can only go 3 miles other wise I will be crying due to my back. My hubby has no problem getting me anyplace. My 77 yr old mom drives me a lot. And yes it can be SCARY LOL

[cave76]

Since grey lives in Mass. there should be another doctor closer to her than CA----but CA isn't that far away on the plane.

[Ricobord]

Ditto Cave & Jackie.

Infectious Disease doctors RARELY treat a Lyme patient for more than 3 weeks.  They're really not allowed to.  Their organization is very strict about following the protocol, which is narrow minded and cruel to patients.  A small group of researchers still hold the reins to the treatment guidelines and they stubbornly refuse to admit they're wrong on anything.

In the meantime, Lyme patient suffer in misery because doctors refuse to treatment.  It's insane.

Go to the ID doc if you want. Maybe he'll diagnose you and give you 3 weeks of Doxy.  Or maybe he'll be really generous and give you a month of Rocephin, which would be more appropriate for you. But he won't treat you any longer. And since you've been sick so long, you'll need longer.  ID docs are notorious for dismissing Lyme patients, and even being insulting to them. They've been warned that 'crazy' people claiming to have Lyme will demand antibiotics and not to give them without positive blood tests.  Don't be surprised if he totally dismisses the IGeneX results.  ID docs have also been warned that "nonstandard" labs are to be ignored.  Never mind that IGeneX runs an approved Western Blot and is fully authorized by the CDC, just as any other lab is.

Don't be afraid to travel to get to a LLMD.  Some people fly in from out of state to see my doc in CA. Don't be afraid to go out of network.  I'm amazed at people who choose to stay miserable rather than paying for the treatment you need.  We shouldn't have to. Our insurance should.  But given the ridiculous state of politics around Lyme, you have to do what it takes to get better.

[JackieCalifornia]

You can indeed try the doc you refer to if he's more accessible, but if he doesn't do what an ILADS-type doc would do, then I would move along.  

[cave76]

It's true that a lot has been learned about Lyme disease in the last few years, SCIENCE WISE.

But since the IDSA published their terrible Lyme guidelines in 2000 and revised them in 2008  treatment now (except for the few good LLMDs out there) has become seriously degraded.

Before it was 'just' a matter of finding an llmd (no easy task, for sure) but then treatments usually lasted until all symptoms were gone even if it took months or years.

Now doctors that don't practice using the ILADS guidelines use the IDSAs severely restricted treatment mode: Maybe for 30 days then-----no more treatment for most people.

So one can hope for a change in attitude but for the doctor you're talking about but...........

[JackieCalifornia]

"Can any one tell me why I can walk with my hubby and he might now that a MIGHT get 1 tick and I get 21 on me."

Same thing used to happen with me, only with mosquitoes on the Gulf Coast.  Everybody else in the family could sit around outside at dusk when the temps were cooling off, but I had to get up and go inside because the mosquitoes were dive-bombing me.  

It's something to do with body chemistry putting out pheromones the little devils like, but I prefer to think it's just because we (you and I) are Special and Sweet!  :)  Small consolation for feeling like an insect's pin cushion, eh.

[greys43]

I can feel my body and I really need some antibiotics so hopeful when I see Dr so so I will give me some. Because the aches and pain plus the cold chill to my bones. When that happens I can't get warm for crap. because for the past say 2 years been when being treated for what my Dr would call a UTI or anything I felt so much better. I even have a letter I wrote to a Dr over a year ago and told him how on them it help my stomach and body pain so much. Oh that was my back Dr in the past 7 years had 3 back surgery were the cut alone is a foot long on back and each surgery took over a year to recover and I swear it been a good 5 years my hubby said he could tell I had it Lyme. Can any one tell me why I can walk with my hubby and he might now that a MIGHT get 1 tick and I get 21 on me. I been to hospital 2 times because you could only see the legs of the little buggers LOL
By the way I do spray but were I live there is a farm next to us with 200 acres and behind us is 100 acres of conservation land. We have deer, coyote, red tail fox, fisher cats, moose which we see all the time. and 5 mins away a giant Mall. Folks love it here like. Myself been here all my life. again you guys are great Thanks deb

[greys43]

This is another one. But I hope  over the past 9 years he might of changed the way he thinks. As Jackie said a lot been learned about Lymes over the past few years. I will see just need to know what to watch out for and what to ask.

[cave76]

In case all our verbiage has hidden the most important thing:

Try to start treatment. Like, yesterday!!! LOL

[cave76]

That doctor, Dr. So and So (grin)  is an Infectious Disease doctor and of course he would say that. 99% of ID doctors will  follow their Guidelines. Neurologists will also.

Bottom line? You need to get to a good ILADS trained doctor and start treatment.

Tom Grier said in one of his articles:

"I once had a discussion with an Internal Medicine Specialist, whom I've known for ten years, about the length of treatment for his Lyme patients.

He was very vocal about how most Lyme is really Ehrlichiosis, and that all Lyme patients get two weeks of doxycycline, period - no exceptions. Except one.

When I met him at an airport that summer, I came to learn his son had been bitten by a tick that spring. As a precaution, he kept his son on amoxicillin for three months, even though he had no symptoms or rash! Yet his late stage Lyme patients still receive two weeks of doxycycline."

BTW I wrote the moderators of this web site and asked if they had any objection to doctor's being named here. They said, point blank, no, as long as it wasn't slanderous.

I also wrote to the Executive Director of ILADS and the answer was "as long as that doctor's name wasn't identified as being an ILADS doctor." "If the doc has a very visible presence on the Internet---- just don't mention s/he is an ILADS doc."

But some docs aren't that 'visible' so then it IS wise to keep their names out of print.

But to keep the peace  here it's wise to------ keep the peace and not mention Lyme doctors here. As far as doctor So and So---- nothing in that article you linked was slanderous so........

[cave76]

That doctor, Dr. So and So (grin)  is an Infectious Disease doctor and of course he would say that. 99% of ID doctors will  follow their Guidelines. Neurologists will also.

Bottom line? You need to get to a good ILADS trained doctor and start treatment.

Tom Grier said in one of his articles:

"I once had a discussion with an Internal Medicine Specialist, whom I've known for ten years, about the length of treatment for his Lyme patients.

He was very vocal about how most Lyme is really Ehrlichiosis, and that all Lyme patients get two weeks of doxycycline, period - no exceptions. Except one.

When I met him at an airport that summer, I came to learn his son had been bitten by a tick that spring. As a precaution, he kept his son on amoxicillin for three months, even though he had no symptoms or rash! Yet his late stage Lyme patients still receive two weeks of doxycycline."

BTW