Hi, just got my IGeneX test results in the mail, but I need some help interpreting them.
I went to see a lyme-literate doctor who was recommended here, I guess I can't say her name, but sorry to say, I found her very unhelpful and frankly too busy to be accepting new patients. She interrupted my (expensive, out of pocket) appointment with multiple phone calls and took three months to send me the results. I had to remind her multiple times, and now that they finally arrived, there is no letter, not even a sentence explaining what they mean! Just an illegible signature scrawled at the bottom of the page.
End rant.
So can anyone here help me figure out what to do next?
this is what my IGeneX test says: IgM 18kDa - **23-25 kDa - 28 kDa - 30 kDa - **31 kDa + **34 kDa - **39 kDa IND **41 kDa ++ 45 kDa - 58 kDa + 66 kDa - **83-93 kDa -
For IgG, only **41 kDa was positive, with one +
Now the sheet says the IgM result is positive according to IGeneX and negative according to the CDC/NYS, and the IgG result is negative according to both.
So obviously, I'm kind of confused.
I'm 24 and have had weird neurological symptoms for the past 3 years - heightened reflexes, shaky hands, numbness in fingers, feet and face, tingling, vibrating, twitching muscles, and - this is really weird - when I brush the skin on certain spots on my legs, I feel a crawling sensation on a totally different part of the same leg! I have crackling knees and minor knee pain and foot pain, although I got x-rays from an orthopedic doctor and he said there was no arthritis.
About 4 years ago I got a bull's eye rash right after a trip to Mississippi in the winter (it was warm in Mississippi and we were outside a lot though.) I went right to my doctor in Massachusetts, where I live, who did an ELISA test which came back negative and she said not to worry, because they don't even have Lyme in Mississippi. I recently was reading that that's not actually true, and additionally there is a lone star tick that can carry some bacteria called b. lonestari that's related to b.burgdorferi, and it can cause a similar disease.
So if I had a b. lonestari infection, maybe it would make sense for some but not all of the bands to be positive? But then why no IgG if the infection has been going on for 3-4 years?
Also, I have an identical twin who never got a bull's eye rash but is having similar symptoms. So basically I'm trying to figure out if it's Lyme, MS or... something else. Do these results need following up in terms of Lyme/lone star tick disease?
Thanks so much for your help! Jessica
Posted by Summer3 (Member # 35286) on :
I'm sorry you had a bad experience with the LLMD from the list you had. Please contact whomever sent you the list so that they can consider your review when suggesting this Dr. to others. It does not sound like this LLMD had your best interests in mind.
Not all of them are like that. A lot of LLMD's will spend a long time with you, not interrupt, discuss results and treatment options etc.
If you had a bulls-eye rash and were never treated right away, you are DEFINITELY at risk for Lyme. If your sister was in the same general tick-infested area and is having symptoms, she may also be at risk.
Band 41 is very common in lyme and a few other infections. It's usually the first to show up. Band 31 and 39 are Lyme specific. Having these show up means that there is a high likelihood that you have Lyme. Band 58 is a heat shock protein.
IgM is more of an active infection while IgG is sometimes used to determine a past or chronic infection. In Lyme these aren't really significant. Sometimes people never produce IgG and have chronic Lyme. IgM can keep showing up because sometimes the body sees the bacteria as a new infection all the time.
Some people never produce detectable antibodies. The CDC's guidelines are very strict and they exclude some of the most lyme-specific bands. Igenex positive generally means positive to most LLMD's and patients.
Were you also evaluated for co-infections such as bartonella, babesia and anaplasma/erlichia? These are all fairly likely. Many, many people have at least 1 co-infection come into play with lyme.
My suggestion is to find a different LLMD. Ask around for specific experiences from those who see him/her.
Posted by dbpei (Member # 33574) on :
If you had a bulls eye rash at some point in time, YOU HAD LYME DISEASE!! Dr. S's book - the Lyme Disease Solution will confirm this.
I am so sorry for what you went through with the LLMD. I live in MA and might be able to help you. I will try to PM you.
**edited name of LLMD**
[ 02-03-2012, 11:23 AM: Message edited by: Lymetoo ]
Posted by bcb1200 (Member # 25745) on :
You are positive per Igenex. That is all you need to know.
Sorry you didn't like dr H. There are other options in MA.
Posted by t9im (Member # 25489) on :
Band 31 is specific to the lyme bacteria. Band 41 is the antigen reaction to the flagella of a spirochete bacteria(not specific to the lyme spirochete).
It indicates exposure to the lyme spirochete.
Posted by Lymetoo (Member # 743) on :
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
Posted by derk diggler (Member # 31903) on :