Help in understanding Western Blot

[Amyloo]

Hi,  I have been diagnosed with MS but have two "positives" on my Lyme test.  I am currently on a DMD for MS but seem to be getting weaker and worse.  The two I tested positve for are as follows:  

Lyme disease 41 KD IGG and Lyme disease 41 KD IGM.

I know the criteria is a certain amount of positives in order for it to be conclusive,  but this was done through Quest diagnostics and not the popular lab that starts with an "I", which has been spoken very highly of.

Any thoughts would be appreciated.  Thanks, Amy

[patsy10]

Was it  lyme?  Sure sounds like it.

[mountaingirl4ever]

Lyme disease....Aaargh. My 20 year old daughter who lives with me became extremely ill in early August. We live in PA, one of the highest states for this disease. Please don't get me wrong here but antibiotics can be our enemy when overused. If within three days I did not see an improvement I stopped dispensing to my children. It's viral and not bacterial. Kind of like the common cold. It is way overprescribed. BUT LYME DISEASE is very serious. It can kill you if not treated. She felt ill for MANY days but still went to work and took care of her patients. Not a whiner at all, she complained to me often. She then came downstairs barely covered by a towel and said LOOK. There it was....the target rash. Almost barely visible with a red dot in the middle. It turned into a bright red solid color by about three inches by morning. Just some valid info.... the rash does not always occur! She went to the doc who diagnosed maybe poison ivy rash and sent her home with nothing. Next two days she cannot even get out of bed and NOOOO appetite. I took her back and raised %^$ and they took blood and gave an antibiotic. First test positive for Lyme second negative. The doc called and said stop taking antibiotic. In between another visit for what apeared to be HERPES. Doc looked and said it lookd like it. Now mind you, she has had the same partner ( her sons father) for almost three years. They tested and she waited and worried. NEGATIVE!!!! The anti she was prescribed can cause vaginal lesions....which she painfully got. The moral of this is be active in your health. Docs don,t always get it, even though I beieve they try. They don,t live with you and can onlt go on what they see and tell them. When something is wrong and you know it. Help yourself...most docs will listen!   Good Luck.

[patientx]

When people talk about DMDs in regard to MS, they usually mean Copaxone, Rebif, Avonex or Betaseron.  These are not immunosuppressants - they modulate the immune system, and their mechanism is not entirely understood.  I read the article that the Wikipedia article references (and this is the problem with relying on Wikipedia).  It talks about a single case where a man developed cat scratch fever while on interferon.  And it mentions that neutropenia is a potential side effect.  This fact is well known, but it is a potential side effect of the drug.  It is not the primary action of the drug.  No where in that article is interferon referred to as an immune suppressor.

[patientx]

To be honest, I very rarely got this forum, and I don't think I've ever posted here.

I'm pretty new to all this; you probably know more than me about the DMDs.  And if not, a few searches on the internet will give you all I know.  It just troubles me when I see information that is patently wrong; like Copaxone being an immunosuppresant.

What is causing you to doubt your diagnosis of MS?

Another thing - if you seek out an "LLMD", then he;s going to give you a diagnosis of lyme disease - whether it's real or not.

[Amyloo]

Thank you X, I was aware of that.  Any other info you can provide (about DMD's, MS, or lyme) would be appreciated.  I am going through all the options/motions here to make sure I have the right dx, and also don't possibly have any co-infections going on.

Thanks again, Amy

[patientx]

Be careful of some of the information in these postings.  Copaxone does not suppress the immune system.  Nor are any of the MS DMDs immunosuppresants.  In the case of Copaxone, it is believed that it acts as a decoy for the myelin protein, tricking the immune system away from attacking the myelin sheath.

[SOONERMOM]

I remember you from the MS board.  I tested positive for lyme earlier this year.  I  found this you-tube video pretty powerful.  It illustrates how difficult it can be to tell the difference between the two diseases.

http://www.youtube.com/watch?v=Lmq-y6EU4AE

Stacey

[Amyloo]

Thank you Cindy; thank you all for your comments.  I will be finding a lyme literate doctor.  God bless you, Amy

[cindy903]

Just a quick note that I just read about a woman who was treated for MS when all the time it was Lyme and the MS meds made the Lyme worse.

I have an acquaintance who has MS and she says that the meds are much more advanced and effective than when she was first diagnosed, so I don't think you should be getting sicker!  

[patsy10]

Read the post below by ram1120.  I would see a llmd for an evaluation.  You can find one by posting at lymenet dot org.  Lyme testing is unreliable at best.  Especially for those who have had it a while.  The immune system is weakened and therefore cannot form antibodies.  I believe Copaxone suppresses the immune system as well.  Not saying you have lyme but it's a better diagnosis than MS.  At least it is treatable.  I have improved considerably by taking antibiotics.  I have had MS symptoms  like numbness, tingling, weakness, dragging of a leg etc....It all went away with treatment. All my MS testing has come back normal.   I have been an avid hiker for 20 years.  My problems started after 3 bullseye rashes in 1992.  I have never tested positive for lyme but I respond to antibiotics.  So go figure.  There is a girl who posts here by the name of tory.  I believe she has a recent post on one of the threads here.  You may want to send her a message.  She was diagnosed with MS and is getting better on antibiotics.

[Sweetpotatoe57]

HI,  I just had the Western Blot done for Lyme's and I am not sure if I understand how this works.  I have been tested for MS, and said I don't have that, but have had Lyme's 2 different times.  Now they are thinking I am suffering from Chronic Lyme's.  I am really confused.  I show antibodies on some other test they did, but that it would just say I had an exposure are another time.  They opted for the Western Blot because it should tell them more.  Will this test for sure show lyme's if it is present?  Read my other post.  I wonder if anyone could shed any light on that one at all.  Can a tick carry other things that could cause symptoms of lyme's? sweetpotatoe57

[Alidora]

Hi again!

Yes, IgM antibodies are present when there’s an ongoing infection. The fact that IgG was also reactive tells us that whatever it is your body is fighting has been there for quite some time—at least a year.

Band 41 indicates the presence of a flagella-bearing bacteria, but I would say it’s more likely to be Lyme than leptospirosis or syphilis (!!!).

“Leptospirosis: Though being recognized among the world's most common zoonoses, leptospirosis is a relatively rare bacterial infection in humans. The infection is commonly transmitted to humans by allowing fresh water that has been contaminated by animal urine to come in contact with unhealed breaks in the skin, eyes or with the mucous membranes. Outside of tropical areas, leptospirosis cases have a relatively distinct seasonality with most of them occurring August-September/February-March. (Cf. Wikipedia)”

One more thing about band 41: People who have been ill with Lyme for a long time are immune-suppressed to some extent and therefore do not mount a large antibody response. These people fall through the cracks of Lyme testing. But they often can count on band 41 to turn up positive. That, along with a host of symptoms (in your case mimicking MS), certainly suggests Lyme disease.

Copaxone, being an immunomodulator, suppresses the immune system… Not great if you have a bacterial infection. :o(

Dora

[Amyloo]

Hi Dora,  Thank you for such a quick response.  I am currently on Copaxone, have been for about eight or nine months.  Do I understand you to say that the IgM antibodies indicate (if even one is positive) that there is an ongoing infection, at the time of test?  And would the number 41 indicate a specific group of infections?

I think you are saying the IgG antibodies may pop up positive if you have had a past infection?  

Thank you for any help you can give; sounds like you know what you are talking about.

Take care, Amy

[Alidora]

Hi Amyloo,

The band 41 is associated with the flagella of Borrelia burgdorferi, but it can also be seen with other bacteria of the spirochete class (Leptospira species, which causes leptospirosis; Borrelia recurrentis, which causes relapsing fever; Treponema pallidum, which causes syphilis).

IgM antibodies indicate an ongoing infection. IgG antibodies appear later and last longer, so they indicate past infection.

I’ve read that Quest was not all that good at detecting Lyme antibodies, so I would have more faith in lab results coming from IGeneX.

When you say DMD, does that mean steroids or cortisone? The reason I’m asking is because this type of medication is known to be very detrimental to Lyme sufferers. The last thing you want to do when you have a bacterial infection is to suppress your immune system. The fact that you are getting worse on these drugs might be an indicator.

Good luck,

Dora