I should be a pro at this already but I'm still confused. I know there is a page here with specifics about results but I still don't understand something.
I am CDC +, my 16 yr old is CDC+, My 6 yr old is CDC+. My husband is positive but not CDC + and today I found out for sure that my 8yr old is positive... but only IgeneX positive on IGG.
How can she be only positive by IgeneX on IGG when she is having neuro symptoms? She has not had abx in a long time. But a few years ago she had to be on low dose macrodantin due to a bladder reflux condition. Could that have skewed the results?
Here are the results. Please tell me what you think. IGM: 41 IND IGG: 31 IND 34 IND 39+ 58+ 41+++
Posted by Geneal (Member # 10375) on :
CDC doesn't count bands 31 and 34.
I would consider your 8 year old positive.
Hugs,
Geneal
Posted by Pinelady (Member # 18524) on :
Has she had any recent bites?
Posted by IckyTicky (Member # 21466) on :
No.. she has never had a tick bite that I'm aware of. Neither has my 6 yr old and he is CDC+.
Posted by Need Lots of Help (Member # 18603) on :
I would treat. My daughter isn't CDC positive, but she is Igenex positive. I am treating. I am not taking any chances, but that is just me. My daughter is 6.
Shalome
Posted by julielynne4 (Member # 20336) on :
Just remember that it is possible to have a tick bite and have no idea - a tick can be the size of a period at the end of a sentence....there's just no way unless there is a distinct rash - if you think about all the nooks and crannies in our body where they can dig in...
Posted by JamesNYC (Member # 15793) on :
What difference does it make? She's infected, get her treatment.
She's positive enough. IGG means that it's an older infection. And you should be doing a lot more research and self education on lyme since your whole family has it.
You should know by now the tests are barely meaningful. They can only confirm an infection, and won't necessarily exclude.
The CDC criteria is for epidemiological study not for diagnosis. But you should know that by now.
Please get the kid treated.
James
Posted by Pinelady (Member # 18524) on :
You are right James it does not matter a pos. is pos.
Her question was -
How can she be only positive by IgeneX on IGG when she is having neuro symptoms? She has not
had abx in a long time. But a few years ago she had to be on low dose macrodantin due to a
bladder reflux condition. Could that have skewed the results?
The latest research says IgG is recent and IgM is long standing over a year.
Posted by JamesNYC (Member # 15793) on :
Pinelady,
I believe you are mistaken.
This is from Dr. C's WB explanation:
"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."
However, what I think it really says is that either can be positive at any time.
James
Posted by IckyTicky (Member # 21466) on :
Thanks for the admonishment James. I've known for a little over a year that I have lyme, and I do research EVERY freaking day. That does not mean I can retain all the information or understand it all. I'm doing the best I can. I never said I wouldn't treat...
geeze.. teach me to ask a question.
Posted by IckyTicky (Member # 21466) on :
Pinelady.. what I was hoping was that her results would come out def. + since she was on low dose Macrodantin for almost a full year when she was 5 (so I guess it's been 3 years.)
Wouldn't more antibodies have shown up from her being on abx for a year? Even though she hasn't been on any recently?
I know that pos. is pos. but when it is CDC + it greatly helps getting insurance to cover.
Treating a whole family of 5 and all the LLMD expenses ... we won't last long if insurance doesn't cover some.
Posted by JamesNYC (Member # 15793) on :
I apologize Icky,
I think I misread your post. I THOUGHT you were asking whether or not to treat. But maybe you were just asking about the test?
I didn't mean to sound too, well, mean.
So, the way I was interpreting your post, naturally I became alarmed thinking you were considering not treating your child.
So, again, I'm sorry for misinterpreting your post.
James
Posted by IckyTicky (Member # 21466) on :
Thanks James. Apology accepted. I have every intention to treat my child, just like my other two are being treated.
Sorry for being ugly I can see where you could have misunderstood.
Posted by Hides1 (Member # 6348) on :
My one son got diagnosed by Dr. J when he was five. WE truly beleive he contracted it from me during the birthing of breastfeeding processes. He had nuero symptoms too with sleep and personlaity issues. His first test through Igenex was CDC positive on the WB IGG. He has been in treatement for almost 4 years now since he had many of the coinfections. During this time every 4 months he has tests. Sometimes he does get a CDC positive WB IGM and then it changes. It all has to do how the bacteria cycles int he body and how your body looks at it int erms of new or old antibodies. NEw bands may light up because one month you had a response to one and another you didn't.
Make sure you get all your kids tested for all the coinfections, treat aggressively and never give up. Timmy is doing very well now- he is a great athlete and gets perfect report cards. He is still showing some positives so we are still treating but we know there has been great STRIVES with him during the past 4 years. I would hate to think of what he would be like now if I never went to Dr. J.
Posted by tick battler (Member # 21113) on :
Ickyticky-
Sorry you are dealing with this too. My entire family of 5 is infected.
My twin boys are 5 and my daughter is almost 3. They have been in treatment about a year under Dr. J in CT. They are being treated very aggressively and improving. 2 abx plus mepron plus artemisinin!
Only one of them had a positive Igenex when we started treatment. Then another turned positive during treatment.
I would not put too much emphasis on the IGG vs. IGM. When I used to ask Dr. J about this, he would say it didn't matter. He said one time that the IGM (which shows more recent exposure) can be from an infection 6 months ago.
To me, it makes sense that your 8 year old has a positive IGG rather than IGM since if she has neuro symptoms, that would indicate an older infection. Not sure if that interpretation is correct, but that's how I understand it.
The fact that your 8 year old has SYMPTOMS plus the positive bands specific to lyme (IGG or IGM)is enough I believe to make a lyme diagnosis.
BUT if your 8 year old did not have symptoms, and had an IGG, Dr. J would probably not treat, as he told me he often tests entire families since the parents want all children tested after one is ill.
Often they all test positive but the ones without symptoms remain healthy without treatment. This would mean that they had been exposed to lyme, but somehow their bodies fought it off.
tickbattler
Posted by Pinelady (Member # 18524) on :
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.
Here are the results. Please tell me what you think. IGM: 41 IND IGG: 31 IND 34 IND 39+ 58+ 41+++
She has not had abx in a long time. -------------------------------------------------- Your right James I was wrong. I guess this is why
most of us who get no response or,
IgG and IgM negative,
turn IgM only, positive after a challenge.
My first test I had one band in IgG.
After 2 years and a challenge I got IgM Pos.
IgG neg. But I was still sick for over 2 years.
So this is the conundrum for me.
Was this old signs of long gone infection? Was this a new infection? Was this a hidden infection that has just resurfaced as a new ongoing inflammation,as it does in syphilis?
I don't know.
Posted by Need Lots of Help (Member # 18603) on :
I have had lyme for what I think to be 20 years.
I have positive IGG bands, but not enough to be CDC positive.
I am CDC positive IGM.......and I know I didn't get bit recently (within 6 months). Things that make you go HUM....
But, IckyTicky I think that lyme attacks each individual differently. Even though I gave my daughter lyme, she has slightly different symptoms than I do. Her father also has lyme. He is from up north, and I think a different strand of lyme. He is more Nuero, I am more arthritic.
She is a mixture of me and her father. Also, she has some of my Bands present on her WB and some of her fathers bands present, it is strange.
Good luck to you and your family...it does suck we the whole family is sick, I know.
Shalome
Posted by Pinelady (Member # 18524) on :
I think you guys are special Need Lots of Help. That may be a key.
Posted by Pinelady (Member # 18524) on :
Evolutionary variance. This may explain it.
Thanks Rick at Lymeinfo at Yahoo Groups as always.