posted
Because my Western Blot was positive in IgG, I am still not convinced that all I am dealing with is Lyme disease...
I was told by the wonderful Dr J. That The western Blot is only useful to show exposure and not neccesarily active infection.
I dont recall a tick bite except at the age of 12 and NEVER had symptoms until my pregnancy with my daughter (13 years later) which has left me very sick and bedridden....
My IgM western Blot was negative... only 41 was IND
My IgG western blot being positive in IgG could be showing exposure from when I was a kid.... not that I actually have that infection.
I need to find out what is wrong with me... I am way too sick to be guessing anymore... I feel my life is on the line. For Dr J to tell me that just because my IgG is positive doesnt mean I have an active infection... well that just makes my questioning all the more realistic...
What would cause all of the symptoms I have????
AS I read more about LD, I realize that I dont really fit the mold in a lot of ways......
WHY is this so confusing???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
If you have as many symptoms as you do right now and have a positive test, it's obvious to me and probably most of us here that it IS a VERY ACTIVE infection. It doesn't matter if it is IgM or IgG.
This makes me want to cry, your doubting this. I wish I was as lucky as you in having such an obvious answer. Many of us never got as positive a test as you did.
My Igenex came back almost completely blank, with only one band which was NOT lyme-specific whatsoever. Not angry at you, of course. It's just hard for me to see this. But from what I hear, most people doubt their lyme diagnosis for quite a while before they are able to believe it; maybe until they start getting better they doubt it.
I was bit way back when I was 14 (saw the tick attached in my arm) and didn't get sick until just two years ago (and I'm 24 now). Lyme disease can hide and lay dormant in your body for years. Many people have stories like this - that they were bit years and years ago but didn't get sick until something hard in their life happened or something stressful came about.
Please try to take comfort in your positive test. I know that sounds wacky, but truly, I would do anything to have that positive WB because I doubt and doubt and doubt but I do so because my WB was completely blank except for ONE lousy non-specific band.
I'm wondering... how do you not fit the "mold" of lyme disease???
I don't think there's really a "mold" here. Lyme disease effects everyone in different ways. No two people with lyme are alike.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Unfortunately, Dr. J is correct. This is why we can rarely rely on these tests, period.
However, just having an IgG response doesn't mean you aren't actively infected either.
This is why it is so important that unless one has classic symptoms/test results, to be sure you have exhausted all other possibilities.
I have the opposite problem than you....I have IgM responses and a very limited IgG response after all of this time (to which scientific common sense would suggest it isn't lyme).
My approach has been to treat but to continue to pursue other causes....granted it makes me crazy at times....
If I were you, based on your results, I would certainly continue to treat for lyme....
I can empathize with your frustration:(
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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posted
Disturbed--- I know, I am sorry about you not having positive WB... I can only imagine how frustrating it is for you... I am frustrated and mine is positive.. The testing is just so complicated and than after being told by a top LLMD that it just means exposure and not active infection... well add more confucsion on top of confusion.
Lymetoo---Dr J, in CT who is my sons LLMD and I think he is pretty lyme literate!!!
KS---I thought IgM meant that infection was active?? I am so confused with all of the testing I really dont know myself. I know how frustrating it is though.. :X
So, I see a new LLMD on the 1st. Not that I dont like my LLMD now, just to cover all ground and get that much needed 2nd opinion for my own sanity. I need to know if what I am suffering with is indeed Lyme disease.....
Especially knowing now that having a positive IgG just mean exposure and not always an active infection. I guess you could have the IgG antibodies for years and years with no active infection..... The testing really needs to start looking for the ANTIGEN instead of the ANTIBODIES.....
Of course our bodies could still be making antibodies to the lyme bacterium even if it isnt active... IgG is memory right? Hopefully I will have more answers on July 1st... 4 hour drive here we come.
I have tested neg for co-infections, yet my son has Anaplasma, mycoplasma and we think Bart.
See Dr J even said he will not treat an IgG mycoplasma result only and IgM.... hmm??? My sons mycoplasma was IgG...
Thanks for all of your input!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Just to address your question.....yes, IgM does indicate active infection but because I've been sick for so long, I should have an IgG response. If my body is able to elicit an IgM immune response, in theory it should be able to elicit an IgG response as well.
Some doctors and scientists that I have spoken to about this have told me it suggests that it is a false positive (for lyme)...that IgM testing is not as robust and if, for example, IgM band 23 is positive, IgG band 23 should be positive as well.
I'm seeing more and more people with 'lyme' that have IgM band 23 and 41 positive yet limited ELISA and IgG response....hmmmm.....
Posts: 561 | From mass | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
While I understand your confusion regarding active vs. inactive infection,
I must admit there are a couple of things that pop into my head.
Were you treated for Lyme as a child? If so, for how long? What was the treatment?
We all know how bb is not an easy bug to erradicate.
Is it possible that your system is "handling" Lyme to a point?
Just like EBV, HHV-6 and CMV.
Only to have these infections re-occur when immune system is depresssed.
There is no "standard" description of Lyme and/or co-infections (symptoms).
Everyone is different.
Could be a latent infection to which your body is no longer posting an immune response (IgM).
I just don't think that IgG response means you don't currently have Lyme.
Maybe Lyme in hiding, but still Lyme.
Just my very humble 2 cents.
Have you thought of doing an antibiotic challenge?
See if you herx?
No one here is exactly like another symptom wise.
I also believe that even if I have a completely negative WB,
That does not mean my Lyme is gone.
I think we all go through the "is it really Lyme" scenario.
I know I did many different times.
I am glad you are consulting another LLMD for a different opinion.
That being said make sure you are honest about your symptoms past and current.
I've had neighbors CDC positive IgM and IgG for Lyme that sit in LLMD's office
And deny symptom after symptom (even ones I've noticed in them).
Hope you get to the bottom of this.
By chance, did Dr. J make any suggestions of what he thought may be the cause of your current symptoms?
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Thank you, I never was treated as a child, never had symptoms just tore that nasty sucker right off my leg and never thought about it again...it was a good size too.
I was very healthy all my life up until I got preggers with my daughter. Very bad and scary symptoms started in my 3rd trimester and got severe when I gave birth, litterly in the hospital... I have been Very ill, and I have been bedridden pretty much since my daughter was born...
I have been on abx but no herx. I am on tetracycline and zith right now and have not herxed but got out of bed after being bedridden and unable to function for almost a year.
My symptoms are pretty severe, and constant since my pregnancy,,, I gave birth March 21st 2007..... this seems never ending.... having a new baby and being a sick as I am has been a struggle and a burden on my family.
Some days I really feel like I am not going to make it....
I just wish I knew if what I was dealing with is in fact lyme.... cant deal with not really knowing anymore.
I ahve also been dx'd with everything under the sun because no one knows what is worng with me and what would cause the multiple symptoms (up to about 51 symptoms)
Dr. J says it could be lyme because of the 31++, but I need to be properly tested for co-infections. I think he said that band 31 actually shows that the orginism is there but I dont think that is scientifically proven.
Thanks Shandy
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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