Got my test result

[Erin]

I wont have a copy of the results in my hands till I can get down to the doctor's office and get copies, but the NP at the MS Clinic called me back about the Western Blot for Lyme test that I had.

She says that it's negative for Lyme. I still want to see what the test says and maybe come back here and post what it says and see if anyone can help interpret it. The clinic is closing in about 20 mins so I wont be able to get down there before they close today.

The WB they did for me was sent to a lab in Utah and not to Igenex...so I might still get another blood draw and send a sample to Igenex.

All the other blood tests that I had last week except one. came back negative (things like lupus, and a bunch of other MS mimickers)

The one test that has not come back yet is a NMO autoantibody. (Neuromyelitis Optica, also known as Devic's disease) The NP said that one could take another week or two, so I wont know that one for awhile.

[lymebytes]

Hi Erin. It is always good to get a copy of your results. Definitely do get tested at IgeneX.

If you need help with the results, I can help you interpret them.

[Erin]

Cool...if I get down to the clinic to pick up my medical records from there tomorrow, I'll try to email you (thru Braintalk) about them.

I was going to go today and get them, but it's raining out, and I didnt feel like trying to zip around all the various Orange Barrel Fungus' (lots of roadwork) in a rainstorm.

[lymebytes]

Sounds good Erin.

"Orange Barrel Fungus!" I have never heard that before!

[Erin]

Sounds good Erin.

"Orange Barrel Fungus!" I have never heard that before!

Well, where I live (Nebraska) it seems like we have antibiotic resistant Orange Barrel Fungus.

A couple of friends of mine moved out of Nebraska in 1988. Road works was "working" on Interstate 80 here in Omaha. My friends said that everytime they come back here to visit, the road works department is STILL working on the same stretch of road and it looks almost the same as it did in 1988. They're just using plastic barrels instead of the big metal ones they used to to warn traffic of the road work.

[lymebytes]

HA! That is funny!

[Sonsie]

Not surprised that your clinic is telling you this. They are not Lyme-literate! Most labs have NO idea how to do LD tests, and most don't even offer the right tests. You will always be told you are negative for LD, until you find a LLMD who knows what tests to order, what labs to use, and how to interpret the tests.

Please make is easy on your stress levels and your bank account, and don't ask non-experts to run you through expensive procedures! Sorry that I keep repeating myself, but I hate to see people wasting time, energy, and money. Life is way too precious.

[Erin]

Not surprised that your clinic is telling you this. They are not Lyme-literate! Most labs have NO idea how to do LD tests, and most don't even offer the right tests. You will always be told you are negative for LD, until you find a LLMD who knows what tests to order, what labs to use, and how to interpret the tests.

Please make is easy on your stress levels and your bank account, and don't ask non-experts to run you through expensive procedures! Sorry that I keep repeating myself, but I hate to see people wasting time, energy, and money. Life is way too precious.

I'm going to go pick up my records and test results tomorrow so that I can see what the WB test actually said. I still have the WB kit that I ordered from Igenex, so I can always get that one done too.

Even tho the MS doctor seemed to not believe that Lyme could be a possibility for whatever my problem is, at least the Nurse Practitioner was open to the idea and went against hospital policy and had the WB test done for me...and she also offered to help me find a LLMD if I needed to find one. I might just ask her for the name of a LLMD and see if I can get another WB done thru Igenex.

[Sonsie]

she also offered to help me find a LLMD
Please do ask. Ask her why she is recommending this doctor too.

Make SURE that the person is a member of ILADS (not IDSA) so that you will actually have a knowledgable doctor who understands diagnosis and treatment. (If she doesn't know, I predict that the doctor is not an ILADS member. But if you call the office, his staff might be able to verify. Maybe not, if you aren't known to them.) IF the doctor is a member of ILADS, ask her if she can help you get an appointment.

LLMDs have very long waiting lists. My doctor has had hundreds of names on his list for years. LLMDS rarely respond to requests for appointments because time doesn't allow them to. One day out of the clear blue my LLMD's receptionist called me and told me to show up at x time on x day. No other options. I dropped everything and grabbed the opening, needless to say.

Another thing about your WB test: None of it means anything until you are also tested and assessed for co-infections. The tests for co-infections are also tricky. (Our luck never ceases, it seems. :( ) You need an LLMD who knows how to read tests AND symptom clusters.

[Buttons2]

Erin, I've been reading some of your posts & I looked up Devic's disease. I read that you had tick bites & you had a rash-correct? Now Devic's is a very rare condition & I realize you are still waiting for the test results, but I'm curious why you chose not to go through with the Igenex lab tests & are wasting time/money on this other lab & these medical professionals that are ignorant about Lyme?

Please don't get offended by my curiousity! I'm wondering what your symptoms are,perhaps you feel in your heart that Lyme isn't the culprit? Maybe you don't quite understand how serious it can be? I'm guessing that not many people in Nebraska have ever heard of it or if they have they consider it something not too bad?

You have been given a contact-the nurse that is willing to help you. That's a whole lot more than many people ever encounter believe me! I'd love to know what this person's reasoning is for going out on a limb to help you. It's sure not common procedure! Maybe she knows someone suffering from Lyme or has taken it upon herself to get educated?

I just feel you are missing an opportunity-some people,such as myself,would probably want to kidnap her just for support!:rolleyes:

Let's say you test positive for Devic's disease.....the treatment will be very tricky. Let's say you do have Lyme & a few co-infections. You begin treatment for Devic's and the bugs are still in your system. You might see some improvements,but my thinking is that you also may very well be setting yourself up for even more misery! And if any part of your treatment is steroids you will be making yourself much more ill.

Sorry, I don't know alot about your situation,insurance,etc. For peace of mind if nothing else,I urge you to carry through with the Igenex testing,you already have the kit-why not use it? You have someone willing to take the blood,why deny yourself the help? IF you test postive,you have a long way to go for recovery. And of course it's possible you have Devic's AND Lyme.

Don't mean to sound like a broken record here but I'm sitting on the other side of the fence,never have gotten a firm diagnosis of MS & was ignored & looked upon as crazy when insisting I might have Lyme. I no longer have the choices you do, so I can't help but urge you to pursue this.

At any rate, I wish you the best......Buttons

[tmptmp]

Sonsie wrote:

Not surprised that your clinic is telling you this. They are not Lyme-literate! Most labs have NO idea how to do LD tests, and most don't even offer the right tests. You will always be told you are negative for LD, until you find a LLMD who knows what tests to order, what labs to use, and how to interpret the tests.

[tmptmp]

Sonsie wrote:
Not surprised that your clinic is telling you this.
They are not Lyme-literate! Most labs have NO idea
how to do LD tests, and most don't even offer the
right tests. You will always be told you are negative
for LD, until you find a LLMD who knows what tests
to order, what labs to use, and how to interpret the
tests.

That was not my experience. I was diagnosed in 1988 and every
lab my blood was sent to showed positive for Lyme titers. Nor
was my doctor a specialist -- he was just my interest and he
had no trouble finding the illness. -- tmp

[Erin]

I dont know if anyone has looked at the other thread that I started about a half hour ago or so, but I did manage to score a copy of the actual results of the Lyme test. It did show two bands (41 and 23 kda)

Apparently the lab that did the tests requires 5 bands for a positive result for Lyme.

I'm wondering...do those two bands mean that I've been nibbled on by an infected tick?

So should I ignore the doctor that says it's negative and should I question that result and find a LLMD???

[Sonsie]

I was diagnosed in 1988 and every lab my blood was sent to showed positive for Lyme titers. Nor was my doctor a specialist -- he was just my interest and he had no trouble finding the illness.
This is great! :) You are quite lucky, because this does not happen very often. I've met two-three people who were this fortunate. I've met 60-70 others who have horror stories about the same process, and I know there are thousands of others out there like them.

How is your treatment going? I hope you're doing well.

[Sonsie]

do those two bands mean that I've been nibbled on by an infected tick?
I'm too busy right now to research this, but if no one else can answer, I'll try to post a response in a week.

should I ignore the doctor that says it's negative and should I question that result and find a LLMD???
Have you listened to anything I've told you? :mad: Good grief. YES, please find an LLMD!

(Maybe I shouldn't bother to help you with your test results, if you don't find my posts credible. :confused: )

[Erin]

I'm too busy right now to research this, but if no one else can answer, I'll try to post a response in a week.


Have you listened to anything I've told you? :mad: Good grief. YES, please find an LLMD!

(Maybe I shouldn't bother to help you with your test results, if you don't find my posts credible. :confused: )

I have listened to you...there are just NO LLMD's in my town (also cant find any in my state either!). I'm going to have to go out of state to be able to be looked at by a LLMD. I just dont want to have to do all that traveling and spending money, only to be told by the LLMD that I'm wasting his/or her time. I'm not sure how far I'll have to travel to find one. I'm also not especially looking forward to traveling for this either.

[RuthHinWV]

I did manage to score a copy of the actual results of the Lyme test. It did show two bands (41 and 23 kda) Apparently the lab that did the tests requires 5 bands for a positive result for Lyme.
Hi Erin, The lab doesn't require 5 bands for positive, the CDC does. Each lab follows the CDC standards for testing. This doesn't mean the lab is "up" on testing for Lyme however.

Following is, in my opinion, the best info on Western Blot description.

Lymenet.org / lymenet flash discussion list:
Author treepatrol Topic: Western blot and other tests. posted 27 July 2004

Explaining Borreliosis (Lyme) Western Blot Tests

The information is from Dr. Sam Donta; an amazing LLMD!!!

In reference to your bands, Dr. Donta states the following:

"In regard to the outer surface proteins, think of it like the skin of a human.
On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C. The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

23-25: Outer surface protein C (osp C).

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."

This very interesting statement is also part of the above article:
"Dr. Donta is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis"

If you would like to read the full article & can't find it, let me know. I copied & pasted the entire article for reference.

Hope this helps!! Ruth in WV

[tmptmp]

06-15-2007 06:17 PM

Cured. A number of short term rounds of IV cefotoxim(sp?).


Quote:

This is great! You are quite lucky, because this does not happen very often. I've met two-three people who were this fortunate. I've met 60-70 others who have horror stories about the same process, and I know there are thousands of others out there like them.

How is your treatment going? I hope you're doing well.

Sonsie